Brenda Denzler Online

July 6, 2011 Update – Being a Cougar, Nubbin, Junk in My Trunk, Recurrence Scares, Chronic My Posterior!, Giving Up the 2% Hope?

2011-07-07T19:42:00.000-07:00

[Please forgive the cr**py formatting of these blogs. Blogspot does not give one a very useful compose function. It looks fine to me when I enter it, but when I actually post it, line breaks are bad and indents don't work, etc. But there's no way to know how to fix them, because when I recall the document and try to correct these bad formats, it either looks perfect again in the editor, or else when it looks bad in the editor and I "fix" it, it looks even worse on the final post. The fault is Blogspot's, not mine! You have to be an HTML coding wizard to make this site look decent, and I'm not. But I keep trying!]

It is the season of my two-year anniversary. On June 7th two years ago I first noticed my oddly red breast. On June 20th, I realized it was probably IBC. On June 30th I received a confirmation that I was right. For some reason, the June 20th anniversary hit me hard this year. I supposed it’s because two years was the maximum length of time my oncologist friend J-Rad told me I might live if I refused treatment. But, he had assured me, that last year would not be a pleasant one. Yet here I am, at the two-year mark. Alive and doing pretty well (as far as we know) because I chose to have treatment.

On the other hand, maybe the two-year mark hit me hard because I have come to understand more about how Stage IV, metastatic disease is handled, and because I have become highly offended at how doctors have begun to talk about end-stage cancer—all end-stage cancer, not just breast cancer.

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Summer has just begun in Carolina. The heat and humidity—especially the humidity—are upon us. The pleasures of the late winter and the spring are gone: the daffodils, the hyacinths, the dogwoods, the redbud trees and the Bradford pears. The vinca in the front flower bed with its purple flowers, and the huge, fragrant rosemary bush (Are they bushes?) growing in my poorly tended garden in back of the house that also sends out purple flowers every year. The irises that bloom furiously on the warm, south end of the house, and the soft, fuzzy lamb’s ear.

However, the bright red gladiolas that I planted a couple of years ago bloomed this last week, though not in such strong force, and they are quite lovely. I must not have planted the corms deeply enough, because the stalks keep falling over and destroying the beautiful flowers. Two orange day lilies have managed to escape being on the local deers’ menu and are blooming next to the glads. And I planted a bunch of variegated pink gladiolus bulbs that are supposed to bloom throughout the summer. They say. This time I used a bulb planter to set the corms, so hopefully the stalks will be a bit more durable as they develop flowers.

By bits and pieces, this spring, I raked windblown leaves out of the mulch beds that I’ve been slowly but surely putting in around my house in order to cut down the amount of weed whacking I have to do. The last time I spent much time with a weed whacker, I got lymphedema out of it, so I’m trying to cut my risk by cutting my work load. The good news is, because of that my longstanding but oft-delayed goal of making my property more low-maintenance—like by mulching the hard-to-mow areas, is finally getting some traction.

It is, in short, it was a good spring at H.E.R.S. While I don’t have all of the energy I would like to be able to get things done, I am managing to putter around a bit and achieve a few little things here and there. My friend Tom once again came to help me—this time with my rainwater collection tank, which I thought had a leak because it wasn’t holding water. Turns out, the leak was in the hose attached to the tank, and that was easily fixed. But while he was here, Tom helped me clean the tank. For our efforts, we got a nice crop of algae for the compost bin. And my tank looks a whole lot cleaner now. My neighbors, Lynn and Dennis, culled some creeping jenny and other assorted plants from their garden to share with me. They even helped me plant it all! We’re hoping that the creeping jenny takes over much of my lawn (which is in pretty sorry shape, grass-wise) and cuts my mowing chores, too. Which would be a good thing, because my riding mower appears to have died.

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Since I last wrote, several big things have happened. First, in late February we had a recurrence scare. It was rather surprising. Without really realizing what I was doing, I activated “the machine” by asking my oncology nurse what she would suggest I do about being short of breath. I explained that this had been happening for some time and was slowly getting worse. Using my inhaler had not helped, so I assumed I was having anxiety attacks (for what reason, I couldn’t say), and tried taking Ativan. While that made me nicely relaxed, it didn’t do much, either to eliminate the shortness of breath, the racing heart, the tightness in my chest…. So what would she suggest? Before I knew it, I was going through a ton of re-staging tests to see if the cancer had come back. Then more tests to see if I had congestive heart failure setting in.

The good news is…I’m clean. At least, there was nothing that we could find. So the one-year anniversary of the end of my treatments (March 10) passed with me learning that I am still cancer free. And this is nice to know.

However, that didn’t eliminate the shortness of breath problem. On March 16th, my chest was so tight and I was so short of breath that I decided I had to do something different. So instead of using just my inhaler, at bedtime I used my inhaler, used a nasal spray to open up my sinuses, and took a Benadryl. When I woke up the next morning I felt better than I had in quite some time. Amazing what a decent night’s rest, complete with breathing well, will do for you! So then I took a Claritin that morning. And that night I repeated the ritual and got an even better night’s sleep. I’ve been doing it ever since.

I am still having trouble with fatigue and a vaguely flu-ish feeling from time to time, but at least I’m breathing better most of the time and my chest isn’t tight so often. I think that my inhalant allergies have just gotten a lot worse since I finished my treatments, and I’m going to have to be more aggressive about managing them. Blood tests showed that my neutrophil (white cell) count is kinda low, still, even a year and a half after my last chemo. So are a couple of other blood counts. It seems that my bone marrow just has not recovered completely from the assault upon it.

As for the fatigue, at the ripe old age of 57, I am learning to drink coffee. It’s not that I like it, though I’m learning to enjoy it more with each cup I sip. But the caffeine buzz makes a big difference in my energy levels! Without it, I’ve noticed, I go flat pretty quickly. Afternoons are particularly problematic. I have learned, however, that doubling up and having a coffee later in the afternoon is not a good idea, if I want to sleep that night.

I also found out what happens when you say the right (or wrong!) thing to your oncology team. This testing thing gets set in motion really fast. It’s kind of comforting, actually. There was no messing around. They were on top of the situation in a flash, ready to throw a safety net under me if I needed it. I have to admit, I was touched.

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I had my second Zometa (bisphosphenate) infusion on March 7th, as the re-staging tests were beginning to wind down. It was a nice experience, being back in infusion. The nurses there are great. This time, they were *really* great. :)

My infusion nurse was a guy named Paul. I said, "I'd like to ask you a couple of questions." And without looking up from the computer screen he said, "Scorpio, long walks on the beach, and scotch."

I laughed and said, "Well, that's nice to know, but those weren't my questions." And then I asked him what I had intended to ask.

We chatted off and on while I was in infusion. At one point he managed to work in the fact that he's 41, although he looks more like he’s in his late 20s. (True, he does.) Of course, because he checked my identity a couple of times to make sure he was giving the right med to the right person, he knew my birth date and knew I was 57.

It felt like a gentle flirtation, and it was fun. :) It left me feeling a bit like a cougar. I don't often feel very attractive and desirable. Thinning hair and loss of one boob and knowing that, having had IBC, I'm a "loaded gun" waiting to go off again...all these make me feel like something less than a "catch." So it was fun to just enjoy a little harmless flirting. Certainly raised my spirits! I got infused with more than just Zometa that day! :)

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Infusion tends to take awhile. There’s preliminary blood work to make sure that you’re healthy enough to get chemo. You have to wait for the results on that. Then you get an IV drip of pre-medications (even if it’s just saline for hydration), then the medication itself. Sometimes you have to wait for the medication to get mixed up in the hospital pharmacy. It all takes time. Hours. So while I was waiting (when Paul wasn’t in the room and flirting with me!), I was reading medical journal articles about chemo for metastatic BC. I was reading the debate about whether sequential monotherapy or combination therapy is better…. And I suddenly had an insight that made me cry. Here’s what I wrote on my note pad:

I am sitting here reading studies on how MBC is treated—what drugs, in what
combinations and in what order. The studies measure the efficacy of different
treatment protocols in terms of time to progression (TTP), overall survival
(OS), overall response rate (ORR), time to treatment failure (TTF),
progression-free survival (PFS), etc. And it just occurred to me—

One and three-quarters years ago I had a hard time understanding what all those
different measures were, how they differed from one another, and why they
mattered. As I would briefly grasp the significance of one or the other term
(only to forget it again a few moments later!), I would become outraged because
it seemed as if these researchers were thinking only in terms of “how long until
the next bad thing happens” or “how long until this good thing quits happening,”
rather than in terms of “how many people did we cure?” It seemed as if they were
happy with half-measures and too willing to judge the success of their efforts
by things that were, to me, mere pale shadows of the real measure of
success—cure.

If they weren’t talking in terms of cure, I didn’t want to know what they had to say. It didn’t seem relevant. I only wanted to know the answer to one question, the only question really worth asking—“Can you cure people like me?” “How many people lived disease-free for at least the magical five years?” Long-term, disease-free survival was the only end point that was worth knowing. The only end point I cared about. All the rest was gobbledy-gook to me.

Today I am sitting here and reading the same kinds of studies and following closely the differences in all these things that not so long ago I couldn’t keep straight and, when I could keep them straight, I refused to countenance them as worth knowing about. Today, TTP, PFS, TTF, etc., are meaningful measures of a treatment’s efficacy, to me.

It has made me cry, to realize how much I’ve come to accept death. To accept the
“half-measures” in which doctors talk and researchers work as meaningful markers
of success. Where once I would have been outraged by what I was reading, today I
didn’t even think of questioning the efficacy endpoints being used. It just seemed normal to me.

Just another way that cancer has changed me. I no longer ask my own questions, so much. Instead, I have learned to ask the questions that Cancer Land tells me to ask. The questions that Cancer Land is prepared to try to answer.

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One of the best-things-ever happened to me on March 13th. I became a grandma!!!! Nubbin was born and proved to be a boy. He is, officially, Warren Guido Denzler—named after both of his grandfathers. I, however, still call him Nubbin most of the time. Todd called to give me the news, and I rushed up to the hospital. Luckily, it was a Sunday, so I could stay for quite a while and didn’t have to worry about being at work.

Nubbin was beautiful, Michelle was tired but glowing, and Todd was tired, proud and protective. They both did well with sharing, though. :) They let Graham (now an uncle!) and me hold Nubbin pretty much most of the time. When Nubbin got fussy at one point, though, right after a diaper change, Todd gently nudged me out of the way and picked him up to comfort him, himself.

I go over to Todd and Michelle’s about once a week to hold Nubbin and play with him a little. (I think Graham goes over a lot more now, too.) I was delighted when one day I went over and Todd was holding him while he slept. Todd passed him over to me, and he kept right on sleeping. Several minutes later he woke up, though, and looked up at me and smiled. He probably would have smiled at whoever was holding him...but I like to think he was smiling because he knew it was me! :)

Of course, I don’t always make him smile. I have trouble comforting him well enough when he’s colicky. And then there was the time I picked him up out of a little chair sitting on the countertop, and as I lifted, he stiffened his legs. Being less flexible that way, he forced me to pick him up out of the seat at an angle...and I wasn’t being careful enough about the hanging lights overhead. Yup. The light whacked poor little Nubbin on his little noggin. He was not pleased! He cried with tears of hurt mixed with wails of outrage. It took me some time to get him to stop crying, then stop sobbing, and fall into an exhausted nap. Then I had to go home and sit in a corner and think about what a bad grandma I’d been! ;)

Nubbin got his back on me, though. I have developed severe (really severe!) tendonitis in my right wrist. I finally went to the orthopedic clinic to see if I had broken it, or ask if there was any way I could take an oral steroid to try to manage it. I can’t have a cortisone shot in my wrist, because it’s on my right wrist, which is my arm with lymphedema. No needle sticks allowed. So I was hoping I could take something orally that might work.

No such luck. If I can’t take the shot, I just have to wear braces on my wrist (one rigid for night time and driving, and one flexible for working during the day) and wait for the inflammation to go down. And keep popping over-the-counter anti-inflammatories until my stomach can’t take it any more. (A point that is easily reached, unfortunately. My cast iron stomach isn’t so cast iron nowadays.)

As I was leaving the exam room at the ortho clinic, the doctor said that this is a common injury, especially in women. Then she thought and said, “Especially in younger women. We see a lot of it in young women who’ve just had babies.” She made a lifting motion with her arms and said, “Lifting the baby.”

“Aha!” I said. “I’ve just become a grandma for the first time!”

Like I said, Nubbin’s got his back on me, now.

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Within a couple of weeks after Nubbin was born, my parents drove out to see him. We took tons of pictures, of course. Four generations.

Since they were coming, they brought an oak Hoosier cabinet that my dad built for me. A beautiful piece of cabinetry! Probably the last large piece of furniture I’ll get from Dad. He’s doing less woodworking nowadays. In part this is because he’s been taking care of Mom and her ongoing health crisis (which, by the way, has been not so much of a crisis the last few months; a blessed relief for all of us!). That has taken a lot of time and attention, as Mom has been pretty sick.

In part it’s because he’s just more tired than he used to be. Several weeks ago he had two stents put in his main aorta leading into the heart—the one they call “the widow-maker.” He finally had a recommended heart catheterization done, and they found this main aorta 80% blocked. It took two stents to open it up enough. He seems to be getting some strength and stamina back, slowly. But it’s hard. He just turned 80 in February and is beginning to admit that he’s on the outskirts of old age and doesn’t seem to bounce back from health challenges like he used to.

It was wonderful to see my parents again, but I do worry about them making the drive out here. I hope that in the future they’ll fly. It’ll be almost as cheap, given the price of gas. It will not take as long to make the trip. And it will be safer....

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In other family news, my brother was fired in early April from a company he’s been with for almost 30 years. I’m proud of him for getting fired. Why so?

Long story short, my brother’s workplace was closed more than a year ago, so he was re-assigned to another shop. For a long time, it’s been rumored that that shop has a serious problem with discrimination. My brother recently hired an African-American man to work there, but the boss over my brother didn’t like the guy and told my brother to let him go after only a couple of weeks. My brother had evidence that the man was learning the job well, and he felt confident that this guy would grow into a good and reliable employee. He refused to fire him, and when the black man in question got some direct flack from my brother’s boss, he asked my brother what to do about it. Per company policy, my brother referred him to the information on the break room wall with corporate’s direct HR phone number.

The boss confronted my brother about what he’d done and made a few choice remarks about the new hire. My brother, as conservative a fellow as you’d ever want to know, said, “Well, if that’s how you feel, Roy, then you’re a racist!” Next thing you know, my brother was getting fired! Corporate backed this action.

My brother was devastated, because he has been very loyal to this company. Very, very loyal. And a very high-performing worker. Corporate tried several years ago to get my brother to move to Indiana and take an executive position, he is just that good. He knows the company inside and out. My brother had just built a big, new house in Kansas, and he didn’t want to uproot his teen-agers. So he said no.

Despite his skills and his years of loyal work, the company refused to have his back, but fired him in favor of a guy (Roy) who’s going to retire in six months, anyway. And opened itself up to a huge lawsuit, if the black employees weren’t so afraid of losing their jobs if they joined arms and filed a complaint. (The man my brother hired was fired about 3-4 weeks after my brother.)

Anyway, I hate it that this has happened to my brother, but if you have to get fired for something, this is a noble thing to get fired for. I’m proud of him for going to bat for someone, especially in a situation where he knew that quiet discrimination was the normal way of doing business. He chose to defy that. Good on him!

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Now back to cancer. Sigh.

I’ve come to realize that when I was in the hospital 50+ years ago, I wasn’t alone 24 hours a day. I always knew I wasn’t, but I was not very tuned in to the specifics. My parents came up to visit every day. One of my grandmothers came out to Kansas from Missouri to watch my baby brother for a week so that my mom could spend more time at the hospital with me. My folks paid one of my mother’s sisters a week of her waitressing wages so that she could afford to take off work and watch my brother so that my mom could come and spend time at the hospital with me. That’s a lot of money, really, to pay out of pocket to someone.

The odd thing is, I don’t remember my parents being there. I remember people, in general, standing in the doorway and putting on the protective clothing that they had to wear when they entered the room. I remember once being in a wheelchair (I think) in the hallway and being wheeled back into the room and seeing the rack with all of the white jackets and things on it that people had to wear. It was remarkable, to me, because I realized I was seeing it from the other side of where I usually saw it. It looked different. But I don’t remember people visiting, including my parents. I remember the blood collection people constantly coming in with their little trays of tubes. I remember being taken down the hall for the abdominal paracentesis and that that entailed. And the nun, of course. But I don’t remember anyone else.

I’m not sure why this is. Is it just the traumatic, unpleasant bits that have stuck in my memory, while the less traumatic stuff that could counter-balance those bits never stuck? Why not? I don’t know.

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I now have “junk in my trunk”—truncal lymphedema. In my case, it’s a pocket of lymphatic fluid that is trapped in my right armpit. It feels like I’m carrying a little coin purse tucked up tight under my arm. My lymph nymph says it happened because the scar tissue along the mastectomy line has thickened and formed a more impenetrable barrier to lymphatic drainage in that area of my trunk. Of course, the back-up in my trunk impedes drainage from my arm, so it all threatens to make my arm lymphedema worse.

The thickening of the scar tissue along the mastectomy line happened because I have not been doing my lymphedema exercises like I need to. (Or any of my other exercises, for that matter....) Working full time takes most of my energy and time. It has been easy to ignore doing the things I ought to be doing for myself—like my exercises.

I just don’t know how to engage in the kind of self-care activities that I really need to be doing. I don’t know how to find the time and energy, while I’m trying to work, take care of this place.... Well, you know the litany. It’s discouraging.

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My last two sets of labs came back looking good. The tumor markers that had gone up late last year have come back down again. Who knows why they went up? Various things can cause it. Maybe there was a “flare” of cancer activity that my body successfully beat back, and the tumor cell die-off caused the upsurge in the tumor markers? It’s as good a theory as any, and certainly the most positive one!

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In June I had another recurrence scare. Well, “scare” is too strong a word. But I was beginning to get anxious.

One of the only “early” warning signs I had before I was diagnosed in 2009 was an intermittent itching deep inside my breast, where I couldn’t really scratch it and relieve the itch. That same kind of deep itching feeling has been happening in my chest wall off and on for several months. In June, it began to happen more frequently and to extend over a broader area of my chest.

I tried to write it all off as healing effects from the radiation. But when the itching began to spread across the sternum, into my left breast and up into my neck, I began to be really concerned. I was not fried in those areas, so how could it be late effects from radiation?

The thought that it might be some kind of rash that just wasn’t very visible prompted me to get out a magnifying mirror one evening and look more closely at the areas that itched. To my surprise, I didn’t see a rash, but I did see what looked to me like peu d’orange—the orange peel effect on the skin caused by cancer spreading throughout the dermal lymphatic system. To me, it all looked pretty similar to the peu d’orange that my doctors pointed out to me when I was diagnosed. As I watched it over the course of a week or so, it seemed to slowly spread.

I saw my oncologist, Dr. A, late last week and she says none of this is IBC returning. It’s just normal healing sensations from the surgery and the radiation, as the nerves grow back and come “on-line” again. Because it involves the nerves, I may feel sensations outside the area that was directly affected by my treatments. It is not, she assured me, a recurrence.

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The big medical oncology convention was the first weekend in June. The American Society of Clinical Oncology—ASCO. The thing draws multiple thousands of oncologists from all over the world. They hold it in Chicago because that city is one of the few that has big enough convention facilities to handle the crowds.

The group pissed me off big-time (yet again). This time it was by issuing a press release proclaiming that cancer is becoming a chronic disease, now. Chronic, my ass! (See below.) I went ballistic. You can call a pig a horse and praise your fine breeding stock all you want. But at the end of the day, what you have is still a pig.

There was also a presentation there that got a lot of publicity. It seems there is very good observational and epidemiological data indicating that metformin, a common drug used to treat Type 2 diabetes, is associated with lower cancer incidence and lower rates of cancer recurrence. They’ve just started a formal clinical trial to find out whether these effects are really due to the metformin or due to some other factor that Type 2 diabetics share in common. But they think that it’s the metformin, because it reduces glycemic reactions in the body. Cancer grows more easily in sugar-rich (high glycemic) environments, so reducing high-glycemic environments could reasonably be expected to decrease the incidence of cancer.

Metformin has been around forever and has an extremely good safety profile. It’s not totally risk free, but it is very safe, on the whole. And cheap. Because of its safety profile and the news coming out of ASCO, I know several women with breast cancer whose oncologists have said they could take small doses of it...just in case it is useful in the fight against cancer. So I emailed my oncologist, Dr. A, to ask if she would let me take a low dose, too.

She said she would not prescribe it. But she would not object if my primary care provider wanted to prescribe it. When I wrote back to ask why she didn’t want to prescribe, given the news coming out of the ASCO meeting, there was no reply.

I was disappointed. This is such a small thing. So low-risk. Why couldn’t she work with me on this? Why did she feel she had to say no? She had an opportunity to make me feel like a partner in my treatment. She had an opportunity to build my trust in her by letting me know that she heard and respected my ideas. Instead, she said no. And gave no explanation.

I went to see my primary, Anna, and before I could finish explaining my rationale for wanting to take metformin, she was writing out the script. She handed it to me with a smile and said, “We use metformin for things other than diabetes. I have no trouble with you taking it. We’ll do some blood work in three months to make sure you’re doing alright on it.”

My therapists tell me I need to work on trusting my doctors more. I agree. But trust has to be earned; it’s not a blind thing. Dr. A blew an opportunity to build trust, and to do so via a very non-threatening treatment issue.

A few days later I was talking to the oncology chaplain and got to talking about Anna. The chaplain observed that I seemed to relax, seemed lighter and happier and more positive when talking about Anna. She pointed out that this is very much in contrast to the way I come across when I’m talking about my oncologists. She’s right. It’s because I have very different experiences being a patient with Anna, as compared to being a patient with my oncologists.

When I saw Dr. A for my regular 3-month check-up last week, I asked her about her opinion on metformin. Without taking her eyes from the computer screen, she said its benefit has yet to be demonstrated in clinical trials, so it’s too early to tell whether it is really useful in the prevention of cancer or recurrence.

I let the subject drop at that. But I am disappointed in her.

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I read a comment to a NY Times editorial that I just cannot fathom. The comment was written by a physician who was treated for metastatic testicular cancer 22 years ago, when he was a first-year medical student. He had found out, back then, that his oncologist was preparing to give him a drug that carried with it a tiny chance of death due to allergic reaction. He confronted the oncologist, asking what else was being concealed from him, and the oncologist asked the young man to quit reading and trust him. The young medical student, now a doctor, went on to write:

No matter how much information you take in and intellectualize the process,
at some point you have to give up control and trust your doctors and let them do
their thing. That is not to say abdicating all responsibility for your health,
but a little knowledge is dangerous.

One of the most important things that your doctor is charged with doing for
you is digesting a huge amount of information, filtering it and sorting out what
is relevant or not to your individual case, and applying it effectively....
There is no easy way to tell people that there is a chance they could die as a
result of what you are about to do. That is why establishing trust and having
patients really believing in what you are trying to do is critical so that you
can face the consequences together, no matter what they may be.

Fortunately life-threatening complications are rare, but their risk is
never zero. There are always choices, but sometimes the risk of doing nothing is
greater. Fortunately I think most people understand this, but it doesn’t make
you feel any better when you are the unfortunate one to have a complication. (http://well.blogs.nytimes.com/2011/03/08/the-doctors-wife-in-the-chemo-chair/?ref=health)

Reading this makes me want to scream. How on earth can you trust another human being so much that you will let them hide dangers from you about things they are planning to do to you, and then turn around and say that this kind of “trust” will help both of you face the consequences “together”?!!!! You face the possible consequences TOGETHER before you go into something, not after the fact when something went wrong and you find out that the procedure was risky but they weren’t telling you this.

An article in the Journal of Clinical Psychiatry (2009; 11:4) about “Lies in the Doctor-Patient Relationship” says that doctors lie to patients most often by minimizing problems, failing to tell the whole truth, or using overly simplified explanations. Doctors are prone to engaging in this behavior when they have to deliver bad news or when they have to admit to making a mistake. Or “prevarication may also represent an effort to encourage a particular treatment agenda” (p. 165).

Tell me the truth, the full truth. Let me digest what you’ve told me. And I will come back, and we will face the future and what needs to be done, together.

Tell me a partial truth or a lie, and I will only learn to mistrust you. And we will face the future and what needs to be done only with great difficulty. And certainly not “together” in any meaningful sense of that word.

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June 7th was National Cancer Survivors Day. Ironic, I think, because June 7, 2009, was the day I first noticed my oddly red breast. On that very day in 2009, there was a news article about how cancer is “not a death sentence” any more, and how more and more people are living longer.

Talk about lying....

But maybe I’m being too harsh. Maybe it’s just a matter of semantics?

There’s a lot of mushy terminology floating around out there about cancer, survival and death. People (commoner, non-medical people, like most of my friends and me) infer things when cancer is talked about in certain ways. When certain words are used. For instance, in the above article, you walk away thinking that oh, you might get cancer nowadays, but they can cure it more often. Not as many people die from it now, as compared to 20 or 30 years ago. It’s no longer a death sentence. That’s what the article said, right? So we can all be “happy-happy-joy-joy” about cancer, because it’s not such a big concern any more, right?

In point of fact, here is what is true (from Cancer World, January/February 2008, “Clifton Leaf: Asking the Difficult Questions”):

• Mortality from cancer, in general, has not changed in the last 30 years. The
number of “life years” lost has not changed significantly.

• The over-all decline in the number of deaths from cancer has been small and is largely attributable to three things:

o Big reductions in mortality in one or two kinds of cancer. These big
reductions are overshadowed by the continued high mortality for all other forms of cancer.

o Improved screening leading to certain conditions being found early and treated before they have become full-fledged or invasive cancer, but they get counted as “cancer” and as “cure of cancer.”

o Reduced incidence of risky behaviors that tend to lead to cancer, most
especially, lower rates of smoking and tobacco use. So, of course, there is a decreasing death rate in those cancers most frequently linked to tobacco use.

• Breast cancer (to reference the cancer I know best) has shown almost no
decline in mortality. In 1987, forty thousand (40,000) women in the U.S. died
because of breast cancer. In 2011, the same number will die.

There have been bright and shining instances of treatment breakthroughs for cancer. For breast cancer, the development of the drug Herceptin for tumors over-expressing the HER2neu receptor (which fuels cancer growth) is a clear example. These treatment breakthroughs, however, have only delayed death, not thwarted it.

But aren’t scientists working feverishly on finding the cure, you ask? Not entirely. “The vast majority of research grants and drugs are simply not aimed at combating what actually kills people” (“Clifton Leaf”, p. 11)—that is, they are not aimed at combating metastatic disease. They are aimed at creating better ways to find and eliminate early-stage disease. But early-stage disease is not what kills, in most cases (unless the tumor is in a really critical location). It’s late-stage disease. Metastasis.

People are getting late-stage disease at the same rates they have been for the last 30 years. Nothing has really changed that much. For breast cancer, mets killed 40,000 women in 1987. It kills 40,000 women today. Widely publicized races to find the cure and all of the pink-rah-rah-hope-hype every October notwithstanding, the truth is that in the last three decades not that much has changed in the field of preventing death from breast cancer.

-------------------

This is a truth that is slowly being acknowledged publically in the cancer community. It was the message of the National Breast Cancer Coalition conference I attended in early May in Washington, DC. At this conference, the NBCC officially launched its “Deadline 2020” project, whose goal is to eliminate breast cancer by January 1, 2020.

They intend to achieve such an ambitious goal by influencing decisions about how breast cancer research funding is directed, so that more of it goes to research that is designed to really cure the disease: first, by finding ways of preventing lethal metastatic breast cancer from developing, and second, by finding a cure for those women who already have it.

Early detection, they point out, has not saved lives. Improvement in screening methods has meant earlier detection of breast cancers. Tumors that we couldn’t find twenty years ago, we can find today. But many of these tend to be cancers that would not have gone on to become life-threatening. They are slow-growing, indolent, and would most likely have remained localized in the breast for a long, long time...or the body’s own self-repair mechanisms would have eliminated them. We find more of them, earlier, nowadays, and they count as breast cancer (even “Stage 0,” or DCIS—ductal carcinoma in situ); they are treated earlier and “cured,” so our “survival numbers” go up. It looks like we’re making progress in preventing breast cancer deaths.

What we’re doing, in reality, is making progress in finding breast cancer earlier and treating it. But that does not translate into preventing breast cancer deaths.

How can this be?

About 5% of all women who are initially diagnosed with breast cancer are diagnosed right from the start at Stage IV—with metastatic disease. Of those 95% who are diagnosed with non-metastatic disease and go on to number themselves among the happy survivors of breast cancer, 30% of them will have their cancer come back. They will become metastatic. If you only count women diagnosed with Stage II and Stage III breast cancer, within five years from their diagnosis, between 50% and 66% of them will go on to develop mets. This year, the number of women living with metastatic breast cancer will rise to 162,000. Half of them will have died of their disease within the next 2-3 years. These figures haven’t changed much in the last 20-30 years. (From the National Breast Cancer Coalition, “Ending Breast Cancer: A Baseline Status Report”) That’s because of the nature of the beast—the cell biology of breast cancer.

Some breast cancer is aggressive and fast-growing, prone to “leaving the nest” early and traveling throughout the body until it finds what it considers a “good neighborhood,” sets up shop and waits a longer or shorter interval of time to begin growing again. If you have that kind of breast cancer, early detection is not going to save your life. You will sooner or later find yourself among the ranks of the 30% of breast cancer survivors who develop incurable metastatic disease.

For reasons that scientists are still trying to tease out, metastatic breast cancer cells are different than non-metastatic breast cancer cells. It’s not just that they have developed little “feet” and learned how to move around in the body. It’s that they also respond differently to the drugs and radiation that typically kill their sister cancer cells that remained localized in the breast. They are less strongly affected by existing cancer treatments, and they are more likely to quickly find a way to evolve around them (develop resistance) and grow anyway. This is what makes these cells killers.

We don’t know how to identify breast cancer early enough to be sure it has not sent out metastatic cells. There may be no such thing as “early enough.” Some breast cancers may be born metastatic.

We don’t know for sure which breast cancer tumors may start local but later develop the ability to send out metastatic cells, so that we can prevent it from happening.

We don’t know which breast cancer tumors have already sent out metastatic cells that we just can’t detect yet, though we do have some tools (such as mitotic index, etc.) that help us to guess which ones might have done so. (The mitotic score for the IBC I had was at the highest level…so my chances of having mets lurking somewhere in my body, waiting to erupt, are pretty good. Yet even so, it’s not 100% certain this will happen.)

We don’t know how to prevent breast cancer cells that have left home turf in the breast and traveled to other parts of the body from becoming active there.

And once these metastasized cells have become active and visible to us (making the woman a Stage IV breast cancer patient), we don’t know how to kill them off or make them go reliably dormant.

In the face of this situation, the goal of the NBCC’s Deadline 2020 is to cure—yes, cure—breast cancer by January 1, 2020, by finding ways to prevent women from developing mets and finding an effective cure for those who already have them.

Fran Visco, the head of the NBCC, said that people have objected to her, “But what if we fail! That’s only nine years from now!”

To which Fran replies, “We already have.”

We have failed to find a cure for the kind of breast cancer that actually kills us—metastatic breast cancer. It’s time that we change the conversation about breast cancer away from so much focus on early detection (which does not really save many lives) and change the focus of our research to preventing and curing the kind of breast cancer that really does the damage. “Hope waits,” is the Deadline 2020 slogan. “Deadline acts.”

You have no idea how much I loved that conference! It was like finding an intellectual home in Cancer Land, at last. A place where it wasn’t all pink and happy and “positive thinking” wasn’t the expected attitude (on pain of excommunication), but where people were talking seriously and critically about the problems with cancer treatment today and how to address those problems. It was magical!

----------------------

So back to the “mushy language” issue. What does it mean, then, when people say, “Oh, cancer isn’t a death sentence any more. More and more people are living longer”?

Well, for one thing, note what they are not saying. They are not saying that “More and more people are being cured.” They’re saying, “More and more people are living longer.” There’s a difference between those two, but it’s a difference that some people (especially those in the field of oncology) wish to elide, to quietly understate. (Whether this qualifies as one form of the lying described in the Journal of Clinical Psychiatry....I’m not sure.)

Note, too, that they do not specify how long “longer” is. As my oncologist friend J-Rad told me, a person with, say, lung cancer who only had six months to live ten years ago may now have two years to live. For IBC, not quite half of us are still alive 5 years after diagnosis. It used to be that we died within a year or so. For metastatic breast cancer, there’s now a 2- to 3-year median survival time.

This is the “living longer” that they are talking about. And they use these numbers to justify calling cancer “chronic,” now. Cancer is becoming, they are saying, a chronic disease because people live longer with it. It’s not because we have reduced mortality, though they don’t come right out and say that. In fact, most cancers still kill about as many people as they ever did. No, cancer is only beginning to be called “chronic” because doctors are now keeping more cancer patients alive for a few more months or a few more years than they used to be able to.

Now, this is an improvement. There’s no doubt about it. We should be happy for this. It’s a gift to humanity for physicians and researchers to have given cancer patients a bit more time on earth before the end comes. A bit more time to savor life, to achieve goals, to set their affairs in order. And we need to find honest ways to celebrate these achievements that have been won by the hard work of thousands of bench scientists and clinical oncologists.

But that doesn’t mean that they have made cancer into a chronic condition, yet. You can call a pig a horse and brag about your fine breeding stock all you want, but at the end of the day, what you have is still a pig.

An oncologist by the name of Siddhartha Mukherjee does not believe this. He is all for re-naming the pig. Mukherjee has recently written an excellent book called The Emperor of All Maladies: A Biography of Cancer. In his concluding thoughts, he says that “with cancer,…no simple, universal, or definitive cure is in sight—and is never likely to be....” Ergo, he says that we may as well focus our efforts on “prolonging life rather than eliminating death. This War on Cancer may best be ‘won’ by redefining victory” (pp. 465-466).

And that is what oncologists have been busy doing in the last decade or so. Redefining victory. Moving the goalposts. Calling something that still kills you long before your time, “chronic.” Not wanting to admit that cancer is still pretty much as fatal as it ever has been. Celebrating as a major victory something that is really only a tiny victory...and hoping no one will notice. Calling a pig a horse, and bragging about their fine breeding stock. Issuing press releases saying that cancer is becoming a “chronic” condition.

I don’t know about you, but to me something that is “chronic” is something that, if you take care of it and mind it well, it may impact your life to some extent, but it’s not likely going to kill you—and it is certainly not likely to kill you sooner rather than later.

The health industry uses a different definition of “chronic.” To them, chronic has nothing to do with whether or not the condition is going to kill you. Whether it will kill you and how soon it will do so are totally separate issues. Instead, in medical-speak, chronic is just something that is long-lasting, persistent or recurrent. That’s the definition. Long-lasting, persistent or recurrent.

Well, when I was a teen-ager, I had an ingrown toenail that I just couldn't seem to get rid of. It was recurrent. It kept coming back, and it took several years of periodic misery to figure out how to get rid of it for good. THAT was chronic. A health condition that needed to be managed. It certainly impacted my life. But it wasn't going to kill me.

I have had migraines for about 20 years now. They keep coming back. They have been a long-lasting issue. THAT is chronic. A health condition that needs to be managed. But it isn't going to kill me.

I have reactive airways—kind of like "asthma lite." It gets better or worse, usually depending on air quality. It is persistent. But it is manageable, and while it COULD flare up into a true breathing crisis and kill me, chances are that if I keep managing it properly, it will never kill me. It won't even come close.

Not so with metastatic breast cancer. It is not a health condition that, if you just stay on top of it, you can probably live a pretty normal life (and life span). No, MBC is a condition that will kill you, and it will do so sooner rather than later. The use of the word “chronic” to describe any cancer bothers me. The use of the word “chronic” to describe metastatic breast cancer chaps me off royally. To put it mildly.

To find out whether my views on this are mainstream or just me being deviant (again!), I polled women on a listserv dedicated to metastatic breast cancer patients. I asked them if they considered their cancer to be a chronic condition, or something that is not chronic. (Notice I did not say “fatal” or “terminal.”)

The first two respondents were a woman with diabetes and a woman with rheumatoid arthritis. Both said emphatically that their MBC was nothing at all like their other health problems. The other problems were truly chronic, they said. But MBC? It is a fatal disease, not a chronic one. The vast majority of women on the listserv said the same thing, many of them quite emphatically: MBC is a fatal illness, not a chronic one.

My favorite response was from a pharmacist on the list, who said that when 90% of the women who have metastatic disease live 20 years or more with it, THEN metastatic breast cancer will be chronic. But not until then.

Metastatic cancer is a long, long, long way from being or becoming a “chronic” disease. Those who would suggest otherwise are engaging in wishful thinking of a most foul and, to me, personally offensive kind. In reading some of the more recent medical literature on the management of MBC, I have been offended in this way over and over again, because the “chronic” label is being attached to MBC more and more often.

Why am I so offended? First, because I think that calling MBC a chronic illness diminishes how serious it is—diminishes the fact that it kills us in very short order. Calling it a chronic illness diminishes the experiences of the women who have it and must face its inevitabilities. I think that is insulting.

Second, I am offended because the words we use to describe things help to shape our perceptions. And our perceptions shape our actions. I am afraid that viewing cancer as a chronic condition rather than admitting it is still fatal in the short-term (for the vast majority of people) is or will be damaging to patient care.

I think maybe this process of damaging patient care has already begun. The more you tend to think in terms of “chronic,” the less you may tend to think in terms of “cure.”

--------------------------------

I have continued to read in the medical literature about how metastatic breast cancer is treated. What I read raises as many questions as it answers.

I have discovered that apparently MBC is not really universally, 100% incurable. Dr. H told me it was incurable, back in the fall of 2009 when I asked him whether he would treat me for cure or for palliation if I became metastatic. Dr. C told me last summer that I should get a new doctor when I implored her not to treat me palliatively if I recur, but to treat me to try to return me to NED. Her point being that it’s incurable and I had expectations that were impossible for her to meet. Dr. A told me last December that she doesn’t try to achieve NED with Stage IV disease, but only seeks to control it—meaning she doesn’t believe it’s curable either. Yet according to the medical literature, there are 2-3% or so of MBC patients who might be cured of their disease (brought back into a durable complete remission), despite being Stage IV, if they were given treatments designed to cure.

I have long understood that MBC patients are not given curative treatments. They are given palliative treatments. That is the standard of care for MBC. I thought I understood what that meant, after talking to Dr. A last December, but I have recently realized that I was wrong. I didn’t understand what it meant at all, and I am not comforted by what I have learned.

• If you are diagnosed with Stages 0-III breast cancer, you may be treated with
Drug Y at dose X. You are treated at this dosage level because it’s the
most effective dose for killing the cancer at these stages.
• It seemed logical to assume, then, that if you are diagnosed with Stage IV
breast cancer and were trying for a cure, you should be treated with Drug Y at
dose X+2 — in other words, with a slightly stronger dose of the drug, since you
are trying to deal with a more aggressive form of the cancer that is more likely
to be resistant to the drug at regular doses. That’s what I thought before
talking to Dr. A in December.

• However, since they do not try to treat for cure for Stage IV disease (which is what Dr. A said in December), they do not treat at dose X+2. I assumed, then, that this meant they treated at the original dose X, but the effects of the drug were now “palliative” because it is not strong enough at such doses to kill the cancer.

• Turns out, they don’t even do that. Dose X is not what “palliative” means. They treat aggressive, Stage IV cancer with Drug Y at dose X-2. Yes, that’s right. With a slightly decreased dose of the drug. A dose that is virtually guaranteed not to produce a complete remission—a “cure.” The reason is because the patient will have to receive these treatments for the rest of their life, so oncologists want to keep the side effects and toxicities as low as possible while still keeping the cancer from progressing. This amazed (and horrified) me. I just didn’t realize they pull their punches like that.

Stage IV treatment is done this way for the sake of the 98% of women for whom a regular, fully therapeutic dose would only cause more toxicities, diminished quality of life, and perhaps bodily harm and earlier death—all without impacting the cancer any more effectively than the lower, palliative dose. We can’t tell ahead of time who might be in that lucky 2% that could actually be helped by more therapeutic doses and who will be in the 98% that would only suffer without benefit at those doses. So we treat everyone in a way that is best for the majority, pulling our treatment punches and sacrificing the chance at increased longevity for the unknown 2%. One article frankly admits all of this and tries to tease out some kind of rubric for discerning which Stage IV women are most likely to have a shot at the cure if treated more aggressively.

Another article brought up a disturbing point: Because we have better imaging methods today and can detect metastases more reliably, there are women today who are diagnosed from the outset with minimal mets (thus as Stage IV) who just a few years ago would have been diagnosed as Stage III. (Monica Morrow and Lori Goldstein, “Surgery of the Primary Tumor in Metastatic Breast Cancer: Closing the Barn Door After the Horse Has Bolted?” Journal of Clinical Oncology, 24:18, June 20, 2006)

This means that a few years ago, these women would have been offered fully therapeutic treatment in the belief they had no mets, and those who fell into the lucky 2% would have had a chance at a longer life, while those who were in the 98% would have rapidly progressed into frank metastatic disease and their treatments would have been altered toward a more palliative approach. So thanks to advances in cancer detection, some women are actually losing years of life.

This has all come as a bit of a surprise to me, and it has not comforted me. In fact, quite the opposite. So I asked my oncologist friend, J-Rad, about this treatment approach for Stage IV disease.

“If you dose at lower amounts,” I asked, “doesn't it make sense that you're never going to even have a *chance* of curing the disease? Instead of hitting it with your best shot, you're pulling your best shot....If you do that, don’t you forfeit even a *chance* of curing the cancer?”

J-Rad responded: “Yup.” And he astutely continued: “And your argument is that this, then, becomes a self-fulfilling prophecy. Can't cure --> don't try --> don't cure --> can't cure.”

Which is, of course, exactly what concerns me.

It’s one thing to say, “I am not going to increase the dose of the medication beyond normal therapeutic levels because it probably won’t help and will only make you sicker.”

It’s another thing, entirely, to say, “I am not going to give you a normal, therapeutic dose of the medication because it probably won’t help. Instead, I’m going to give you a sub-therapeutic dose.”

The cancer itself gives women with MBC a 2% chance of beating it and living a longer life, with appropriate treatment. That’s not a very good chance. But it’s still better than what oncologists give women with MBC! By pulling their punches and only treating MBC with sub-therapeutic, palliative approaches, they give women a 0% chance of beating their disease and living a longer life.

In response to this new understanding of what “palliative” treatment means, I revised my treatment protocol and gave a copy to Dr. A when I saw her last week. I told her it was a slightly revised version of the document, based on our conversation last December, and I asked her to put it in my chart. Here’s what I wrote:

In the event I am diagnosed with terminal-stage (Stage IV) inflammatory breast cancer or another terminal-stage disease:

1. Our initial treatment goal will be to attempt to get me into complete
remission.
2. I will have the most aggressive, therapeutic-level treatments that can be safely used with the intent of achieving “cure,” understood as (1) above.
a. I will not have merely palliative treatments intended just to try to contain progression, at this time.
3. It may take two or three tries to find the treatment or treatments that will work to effect (1) above. That’s alright.
4. We will pull back to palliative treatment as our alternative treatment goal when one of the following occurs:
a. We have achieved a solid complete remission, per (1) above.
b. I say that I can’t take the treatments any longer and we need to pull back so I can withstand them.
c. My oncologists say that if they give me one more treatment at therapeutic levels,
they believe it will kill me.
d. We have tried two or three different therapeutic treatments to achieve (1) above, and they have been consistently ineffective.
5. Treatment at this point will be palliative, that is, designed to try to help me maintain a positive health status for as long as possible while minimizing toxicities as much as possible.

She looked at it. She did not look at me, but glanced away. Then she laid the page aside. I think she may have said, “OK.” I’m not sure. I got the feeling that she did not agree with what she was reading, but that she was refusing to say anything...that she was biting her tongue.

---------------------------

But maybe I am wrong. What if I am wrong?

The vast, vast majority of women with metastatic breast cancer will not respond to any treatment (25% of those with mets succumb quickly), or will not respond to it for very long. The longer you have mets, the harder it gets to find a treatment that works. The five-year survival rate for MBC is 20%—which means that five years after diagnosis with MBC, only 20% of women are still alive. Only 20%!!!!

From the very outset of my diagnosis, when I was looking into survival rates and recurrence rates and realized what the outlook is for me, having IBC, I have been fighting like crazy to make sure that if I recur, I have a chance to be in that 2% who do have a long-term, positive response to aggressive treatment. I have been fighting like hell to be reassured that my doctors will use treatments designed to give me the best chance to find out whether I am one of the lucky 2% who are long-term responders. Who are “cured.”

But why? Why am I fighting for this? Why should I believe that I would be in the select 2%? What makes me so special? Why shouldn’t I think that I will be just like the other 98% of women, for whom therapeutic treatments do not work? Women for whom punches-pulled, palliative treatment makes sense?

Maybe I need to just give it up? Quit fighting for that 2% hope and learn to accept that if I become metastatic, I will die of my disease, most likely within a few years. Having accepted that—having accepted that no matter what, if I recur I’m going to die sooner than I should have—I could more easily accept whatever treatment options my doctors offer me. This would make me more popular with them, I’m sure, if I had fewer opinions about my treatment and just went along with whatever they wanted to do.

In the last couple of weeks, I have been crumbling inside. The battle for survival is becoming too hard. In considering the need to give up the fight for the 2% hope, it feels like the will to live is being extinguished. The 2% hope and my will to live are so closely tied together.... Here is what I wrote to J-Rad:

It's an odd thing, but I feel that I’m closer to giving up. Fighting to stay
alive in a way that is meaningful to me has been too hard. And it promises to be
even harder in the future, if I become metastatic. First is the challenge of the
disease itself. The more I read about the cell biology of cancer -- what little
of it I can understand -- the more impressed I am with the complexity of this
beast and how challenging it is to try to treat it successfully. I admire those
of you who have dedicated your lives to trying to move us forward in that
direction. Second is the challenge of the medical system that you get caught up
in, when you have a cancer diagnosis.

Between the cancer itself and the cancer system, I am feeling very beaten down. As if I should quit caring whether I'm treated palliatively or curatively if I become metastatic. As if I should quit caring whether I live a couple of years and then die, or fight for a chance -- no matter how slim it may be -- to achieve complete remission and live for considerably longer than that. If I quit caring about the outcome, I will quit irritating my doctors and nurses.

I feel that if I do so, I will also have lost my will to live, and that will be deadly. But I feel that I'm on the verge of doing that. Just giving up the fight to live on terms that make sense to me, and let the cancer system treat me palliatively if/when the time comes, and resign myself to dying early. I feel very defeated.

In the few days since I wrote those words, the sense of utter defeat and loss of hope has grown greater. There is an empty place in my heart where there used to be a bright spark that made me want to fight, fight, fight to live.

Was that spark just fear of dying? Or was it a love of life?

Is this the beginning of a healthy acceptance of my diagnosis, and it just feels like defeat to me because it’s so unfamiliar? Or has something important died inside, already? Can I manage to give up the 2% hope and yet find a way to keep alive that inner spark? Or are the two inextricably linked for me? If one dies, does the other die, too?

All I know is that the picture of the future that cancer itself paints for me is not very reassuring. If the cancer does come back, then the picture of the future that cancer treatment paints for me is downright terrifying.

I have to learn how to accept these things and quit fighting, because fighting is too hard. I don’t think I can do it much longer.

----------------------

I was talking to the oncology chaplain a couple of weeks ago (before my recent appointment with Dr. A) about loss of faith and how to go about rebuilding a meaningful faith. I had been losing my faith, my sense of being part of a meaningful universe, for a long time before I got sick. Getting cancer has not helped me to find it again. Far from it. I commented that I felt cheated, because having a life-threatening illness is supposed to bring you all these great insights about the meaning of life and lead to your enlightenment and stuff. But I’ve gotten bumpkis from it.

She asked me what I felt I had gotten from the experience of having cancer. I responded with the first thing that popped into my head, uncensored:

“The only thing I’ve emerged with is a poorer self-image. I feel bad about myself as a human being in new ways that I never did before. I’m a difficult patient. A bad person, because I can’t trust my doctors the way they want me to trust them. I am unlikeable and unlovable. I haven’t felt this bad about myself in a long, long time. Not only have I not gained anything from my cancer experience, I’ve lost ground.”

As I was leaving the hospital parking deck after talking to the chaplain, I was ruminating on what we’d discussed. I mentally tried to put myself in Dr. A’s place, with me as a patient. To role play, in my head, what it would be like to be confronted in a clinical exam room with someone like me. Here’s the conversation that played itself out:

Dr. A (with some exasperation): I don’t understand it, Brenda. What is it that
you want from me? We have tried to give you the best care we can. We’ve given
you more time, on the whole, than most of our patients get. We’ve consulted with
the chaplain and consulted with the oncology psychiatrist to try to meet your
needs. But still you aren’t happy with what happens. You don’t trust us. You are
worried and concerned and second-guess almost everything we do. You question our knowledge, our skill and by implication our intentions. What else do you want
from us?!!! I don’t know how to do anything else.

[And suddenly, in my mind, in this fictional conversation, there was this big “snapping.” The response that popped into my head is not at all the one that I expected from myself.]

Me (angrily): I don’t want anything from you! I don’t even want to know you! I
don’t want to know you. I want you out of my life. Out of it! Gone! No offense,
but I don’t want you in my life. I don’t want to know you. I don’t want to ever
have known you. I want to walk out of here. I want to never see you again. Never
see this place again. I want to just go home. Why won’t you let me go home? Just
leave me alone and let me go home! I hate you! I hate you all and I don’t want
you in my life! Why do you have to be here at all?!!!!! Just leave me alone and
let me go home. Why can’t I get rid of you!???! Why am I still here? Why are you
still here? Go away! Leave me alone! Just let me go home!

I realized that I didn’t know who was speaking, in this fictional dialogue. At some point Brenda-now and Brenda-then became all mixed up together.

-----------------------

Since this little role play, I’ve found that the fantasy of just walking away from it all comes to mind more and more often. I fantasize about packing it all up and going to live in some shack at the beach with my animals. No more doctors. No more anti-cancer drugs. No more pills. No more images or lab work. No more worries about how I’m going to be treated, because I’m not going to be treated at all. No more doctors to not like me. No more doctors who will refuse to try to save my life and will only want to try to prolong it for a bit, instead.

And in the mornings, at this beach, when I get up, I will look in the mirror and notice that I have only one breast and think, “Hmmm.... Why is that? I vaguely remember that something really, really bad happened to me. I don’t recall just what it was.” Then I will shrug my shoulders and say, “Oh well.” And I will go out and enjoy the day.

For now, instead of walking away from my doctors and my treatment, I have walked away from therapy for a month or two. To think things through. To try to kill the 2% hope and come to a place where I’m OK with that.

This is something I have to do on my own. I think I have to do this on my own. I have to figure out how to accept that a 2% chance of a longer life is not worth fighting for. That's it's OK to just ignore that chance and be prepared to settle for palliative care until I die prematurely. I have to figure out how to shut the door on that 2% hope once and for all. To give up even that shred of hope for a longer life.

I have to try to do this without losing the will to live, in the meantime. I have to try to separate this futile 2% hope for the future from the will to live both today and tomorrow. To kill the one, without losing the other. I don’t know if it’s possible.

------------------

This little psychodrama has been playing itself out in my life for the last couple of weeks. The other day, I found a song stuck in my head. Or rather, a fragment of a song. It was “You Needed Me,” by Anne Murray. The bits that kept playing in my head were the words “You gave me hope” and “You put me high, upon a pedestal. So high that I could almost see eternity. You needed me. You needed me.”

I can’t quite figure out why that particular song should be the background music of my inner life, right now. I mean, “You gave me hope” is pretty transparent. I’m thinking a lot about the need to give up the 2% hope, and this song talks about getting hope back again. But the whole “needed me” thing? What’s that about? (I don’t think it’s about Nubbin. He’s wonderful to be with—a true balm for my soul. But he doesn’t really need me.)

Here are the complete lyrics:

I cried a tear: you wiped it dry.
I was confused: you cleared my mind.
I sold my soul: you bought it back for me.
And held me up and gave me dignity,
Somehow you needed me.
You gave me strength to stand alone again,
To face the world out on my own again.
You put me high upon a pedestal,
So high that I could almost see eternity,
You needed me.
You needed me.

And I can't believe it's you, I can't believe it's true:
I needed you and you were there.
And I'll never leave: Why should I leave? I'd be a fool.
'Cause I've finally found someone who really cares.

You held my hand when it was cold.
When I was lost, you took me home.
You gave me hope when I was at the end.
And turned my lies back into truth again:
You even called me friend.

You gave me strength to stand alone again,
To face the world out on my own again.
You put me high upon a pedestal,
So high that I could almost see eternity,
You needed me.
You needed me.

You needed me.
You needed me.

----------------------------

I walked away from my meeting with Dr. A last week feeling hopeless about the future. The whole metformin thing and then her tongue-biting acceptance of my treatment priorities document….

There is no working with the cancer treatment system, if you are a patient. You are its object. You get lost as an individual “you.” You become a data point in a set of statistics that tell doctors what to do with you. How to treat you. You lose your voice. Your personhood. Your life.

I decided that for the 4th of July weekend, I was going to act as if none of this mattered to me any more. I was going to act as if I was OK with the prospect of getting a recurrence, being treated only palliatively, and dying before my time. I was going to try on for size what it would feel like not to fight for my future, but just to accept without question whatever happens.

Another IBC survivor (Kate) and I had a kayaking trip planned in memory of our friend Janet, who died of IBC in January. I had begged Janet to get well, when her recurrence came last October, just six months after we had all finished our treatments. Janet loved to kayak, and I told her to get well and take me kayaking this summer for my birthday. I’d always thought it might be fun, but it’s also kind of scary for me, because I can’t swim without nose plugs. I drown pretty easily! If the kayak capsized, I would start to get water in my lungs before a life vest could bring me back to the surface. Janet promised she would try to get better and that we would do this. But she didn’t make it. Instead, her husband Tommy played host to Kate and me and took us on a memorial kayak trip down the James River in Virginia.

To make the weekend complete, as I was driving back into town, I stopped to hold Nubbin and play with him for awhile.

For three days, I pretended that I wasn’t collapsing, inside, but that I was OK with everything. It was nice to pretend. It’s not that I didn’t think about the future. It’s just that when I did, I forced myself to take the pretend attitude that if I recur I will die sooner rather than later, and that’s OK. There is nothing, I told myself, to fight for. Not for aggressive treatment. Not for extended life. Just accept.

It was nice to pretend. It felt quite inauthentic. But it was nice to pretend that it didn’t matter. There is a certain kind of peace in giving up.

January 20, 2011 Update ––

2011-01-20T19:30:00.000-08:00

Miscellania, Meltdown, and Courage

Well, the holiday season has come and gone for another year, and with it the best part of the holiday season: anticipating the holiday season! I find that what I most enjoy about that time of year is the anticipation of it and the way that translates into a break from the ordinary routines of life: The little parties, both at work and outside of work. The paid days off from work. Sometimes buying gifts for others is fun, especially when you think you’ve found something they might really enjoy. (It can also be a real burden, if you can’t find the inspiration to buy or make or do just the right thing.) Receiving gifts is nice, too, although the older I get, the less importance that has.

This year we had Christmas dinner at my son and daughter-in-law’s house. Michelle fixed a beef stew, and I brought side dishes and desserts. I love stew, and this was very, very good. Although land animals are not normally on my menu, I indulged freely and felt like I’d really had a treat. I also freely enjoyed the desserts, to my detriment when I stepped on the scales the next day. But what the heck! ‘Tis the season!

We were gifted, here, with snow starting late on Christmas Day and falling all through the night, so the Sunday after Christmas we woke to about 5-6 inches of nice, moist snow that was perfect for building snowmen. Yes, I was tempted. But no, I didn’t build one. Instead, the fur children and I spent a nice, quiet day inside. I spent a lot of the day journaling about what had been happening the previous ten days. It seemed to me that it was almost a Christmas miracle –– a little peace on (my corner of the) earth. But more about that, later.

The cloud cover that had been sitting over the area for days left on the Sunday night after Christmas, so the snow started to melt on Monday. I happened to be standing in front of the little bay window over my kitchen sink just as the sun began to shine over the treetops that morning. The way it illuminated the snow-laden branches against the blue, blue sky…it was just magnificent! It took my breath away. Those are the moments….

I had supper on New Year’s Eve with a friend, and spent New Year’s Day with a few other old friends. My old homies. The gathering was smaller than our gatherings used to be, but we’ve all gone our separate ways, now, and what used to be hasn’t been for a long time. Nevertheless, auld acquaintances were not forgot…. It was really good to see those who showed up.

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I read a book about Iscador––mistletoe injections for cancer treatment. (Too dear for the likes of me!) Unlike too many publications in the field of alternative cancer remedies, this book did not promise a miracle cure of any cancer at any stage if you’d just use mistletoe. Its claims for the treatment were more moderate. Nor did it suggest that the evil medical establishment doesn’t really want to cure cancer and is suppressing cheap and effective cures because they can’t be patented and thus there is no money to be made from them. In fact, though it had some criticisms of the dominant medical approach to cancer, they were fairly moderate criticisms, by the standards that usually apply in the field of alternative health.

Though there was a bibliography at the end, citing scientific and clinical studies done with mistletoe, the book was a little too thinly documented for my tastes. And it had a healthy dose of metaphysical/spiritual observations and advice about cancer, which is not surprising given that the mistletoe treatment has been championed for quite some time by theosophists (followers of Rudolf Steiner).

The book made the observation that it is when active treatment for cancer (chemo, surgery and radiation) has been finished that the real therapy for the disease begins. This strikes me as true, in my case. I am certainly not out of cancer therapy, yet.

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Physically, I am doing well. My hair continues to be thin and wispy, now. Especially on the top. It has a real “feathered” effect, but Mother Nature is doing the feathering. And she keeps at it! I just keep losing more and more hair. Not sure when it’s going to stop looking like really thin, feathered hair and start looking like frankly absent hair!

I finally went to get the hair on the sides and back trimmed so that it would look a bit more feathered and wispy like the top––so it would look more like a deliberate hair style rather than the after-effects of something nasty. Musta worked, because I’ve received several compliments since then on how cute my hair is.

I was going through some old papers a few days later and saw a picture I’d cut out of a catalog. The woman in the picture had a hair cut that I had tried for a long time to get hairdressers to give me, several years ago. With my coarse, thick hair, they were never really able to do it. They couldn’t thin it enough, and even if they thinned it a lot, it was just too coarse to lie right. I used to ask them to make me look like the young woman in the picture, and promise them a $5,000 bonus if they really COULD make me look like the young woman in the picture! (She was young and cute and skinny. I never was in any danger of having to give out that bonus.)

But now, voila! My hair style looks a lot like the young woman’s hair style, and while I’m not young and cute, I am a whole lot skinnier. Like I’ve said before, it has taken me thousands and thousands of dollars to look this good!

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My lymphedema is under nice control. There’s one place on my forearm that tends to collect fluid pretty readily. I’m always fighting it, there. But the constant pain is gone, now. And there’s been a breakthrough in how the lymph fluid collects in my hand and makes it all puffy.

A few weeks ago my lymph nymph tried kinesio taping. She put four thin strips of a very flexible fabric tape fanned out starting on the right side of my back and running across it to the left side, where all the strips centered at a common point. The idea is that as you move around, the tape moves the surface layers of your skin just a little tiny bit. Just under the surface layer of your skin is where your lymphatic capillaries lie. The movement stimulates them, so fluid that may be having a hard time moving along gets the boost of some added pumping action.

For most of the last year, since my right-side mastectomy and lymph node removal, I had lost about 80% of the wrinkles on that hand due to the accumulation of lymphatic fluid. My doctors would say I needed to wear a pressure glove (or gauntlet, as they’re called). I categorically refused! But after a couple of days in the kinesio tape I could tell it was working because I had wrinkles again! Instead of looking smooth and a little puffy with fluid, the back of my hand began to show wrinkles in all the “right” places to make it match my left hand. Never have wrinkles looked so good!

You can’t wear kinesio tape all the time. You can only wear a given application for 3-4 days, and then you have to take it off very carefully so as not to peel off the top couple of layers of your skin with it. But I’ve bought my own tape and am learning how to do this so I can wear the tape more often than just whenever my lymph nymph can apply it.

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The effort to create a bucket list continues. I’ve added two items to it. One is to go kayaking with Janet, one of the Fry Gals (with me and Kate) who were getting our radiation treatments at the same time last spring. Janet’s gotten sick again, but we are planning on her getting well so she can take me kayaking in June.

I’ve always thought kayaking looked like fun, but I’ve been leery to try it because I can’t swim without nose plugs. Seriously. Dunk me under water without nose plugs and I immediately start to drown. Put me in a shower fully under the running water, and the danger is the same! So doing things like kayaking seem scary, because I’m afraid if I tip over I’ll get a snootful of water and drown.

Janet assures me that this is not so. Something about a safety vest that will right me, face up, if I go into the water. I don’t think she fully appreciates what I mean when I say that I *immediately* begin to drown when I go underwater for even a second without nose plugs.

But…that’s what bucket lists are all about, right? Doing the things you’ve always thought you’d like to do but felt you couldn’t do, for some reason?

The other new thing on my bucket list is not really something I’ve always wanted to do, but I met a friend in the store the other day, and he inspired me. Jon Heuer is a Viet Nam vet and a big anti-war activist. I asked him how he’d been doing, and he said well, that he’d only gotten arrested once this past year. I had to laugh. That’s not the kind of yardstick one typically uses to measure the success or failure of a year!

But then I thought about it, and I thought he might be on to something.

At least once before I die, I need to peaceably demonstrate for some social cause that I believe in and risk getting arrested. Possibly even actually, really get arrested. That’s something worthy of being on a bucket list, I think. (Mom & Dad, you can blame Jon!)

One of my co-workers asked me yesterday if I’d created a bucket list, so I told her about this item. I don’t think she’s stopped laughing, yet!

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The other bit of news is that I have a new dog. I wanted to adopt another boxer, because I miss the boxer I had to put down last year right before I got my diagnosis. As it is, the dog I got is only ¾ boxer and ¼ lab and he doesn’t look a whole lot like a boxer. My vet says he looks more like a Great Dane mix to her (yikes!). His name is “Graham” –– just like my first son, which is sure to cause confusion. :) I didn’t name him, though. And I’m reluctant to re-name him, as this is the second name he’s had in his short 8 months of life. So, “Graham” it is. Graham-the-Dog.

I had forgotten how much effort and energy it takes to have a puppy, not to mention the effort and energy it takes to integrate another animal into a pack. I think we’re doing well, though, on the whole. There are some issues, and there have been some skirmishes, but I think we’re doing well.

Adopting another dog has required that I take a real leap of faith that I’m going to be around long enough to see the dog through to his old age. It’s a leap of faith I am willing to make. I won’t deprive myself of the joy of having fur children, just because this cancer crap might come back and I might die. After all, it might not and I might not!

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That said, I realized on December 16th that my latest blood work shows that my tumor markers are headed up again, after having fallen at every measurement point since I finished treatment. One of the markers is up 55% over what it was three months ago or about 2/3 of where it was when I was first diagnosed. In addition, one out of the four liver enzymes is also elevated, although the others are still headed downward.

This is just something we have to watch. The results could be just a passing blip that will settle down again. If the markers continue to climb over the next 6-9 months, we may have to start doing some scanning to try to figure out what’s going on. Or if they rise drastically by the time I have my next blood work early in March, we’ll have to start trying to figure out what’s happening. Or if I start having symptoms that something is wrong.

But it’s also very possible that these readings are just anomalies or are my normal range of variation and don’t mean a thing. Only time will tell. This is the nature of the post-treatment waiting game.

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I have specified, here, that I only realized my tumor markers were rising on December 16th, because something happened on December 15th that triggered my PTSD. My anxiety and depression levels went through the roof, and it was bad. Very bad. This was one of the worst attacks I’ve had during this entire medical sojourn. It was triggered by anxiety and depression over what happened on the 15th and in the days thereafter…not by my tumor markers.

But I got an unexpected gift on December 22nd when I saw my onc doc, Dr. A. It was the gift of new understanding, and it caused a domino effect. It has changed––and is still changing––everything.

Well, maybe not *everything*––I am me, after all. But it did change a whole hell of a lot. I walked around in a daze for the next couple of days trying to solidify and grow this new understanding. And I kept thinking, “What just happened, here?” And by “just happened,” I meant in the last year and a half since my diagnosis.

This is what I was journaling about on the day after Christmas, when it was too snowy and white and beautiful outside to contemplate doing anything too practical. It was a day built to order for reflection and reverie, and I took advantage of it.

So go fix yourself a nice cup of tea or coffee, get an afghan to throw over your knees, sit back in your chair, and read the story….

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As you will recall, I have been alarmed and outraged for a long time about the “standard of care” for Stage IV (metastatic) breast cancer. The standard says that metastatic BC is incurable and so the goals of treatment are not to even *try* to cure it. Instead, the goals are to try to contain its progress, if possible, and palliate any symptoms caused by the cancer or its treatments.

At first blush, the statement that metastatic BC is incurable so they try to extend life for as long as possible by controlling the disease, instead, makes sense. I mean, it’s sad. But you can’t do what you can’t do, right? If you can’t cure people, you can’t cure people.

The trouble is, I knew they *could* cure people. It might not happen very often, but it did happen. Women with metastatic breast cancer were returned to NED––No Evidence of Disease––sometimes. I saw their posts on the IBC listserv and on the BC Mets listserv. I heard about them in odd places, here and there. So I knew that what the standard of care said about metastatic breast cancer wasn’t 100% true! It might be hard to get Stage IV patients to NED, but it was not impossible.

I read this statement about the standard of care early-on, soon after I had been diagnosed. Knowing that IBC has a higher rate of recurrence than regular BC and knowing that it tends to come back early, I have known from the outset that mets (Stage IV disease) could be in my future. I was blindsided by my diagnosis in 2009, but I have been determined not to be blindsided like that again, if I can help it. I have been determined to be as prepared as possible for a diagnosis of metastatic cancer at some time in my future. To know what it means and what I want to do if/when it happens.

My first onc doc, Dr. H, told me several times that they thought they could cure me. This meant getting me to NED, which held out the promise (not an iron-clad guarantee, but a hopeful promise) that I will be able to live out my normal life span unencumbered by cancer or its treatments. This defined what I knew about NED. How I understood what it meant.

Since I also knew women with Stage IV disease who had been able to achieve this––they had been returned to NED––the pronouncement of the medical establishment that they couldn’t cure Stage IV disease seemed more than just untrue––it seemed cruel and dismissive. And their approach to dealing with it seemed, to me, absolutely unthinkable.

I decided early-on that if my cure from Stage III cancer didn’t work and I became metastatic, we would fight one more time to return me to NED. We would fight, as the Susan G. Komen Foundation says, for the cure! Because I knew it could be done.

This idea about returning me to NED if I became metastatic colored just about everything that happened during my treatment. I let Dr. H go because we were not a good fit in a variety of ways, but one big issue I had with him––the day that I knew I couldn't stay with him––was the day when I asked him if he would treat me curatively or palliatively if I got a recurrence. He looked at the floor and said, "If you get a recurrence, it's Stage IV cancer. There is no cure for Stage IV cancer." I knew, then, that I had to get rid of him, because he was not a fighter. And I am.

After this conversation with him, I got really gun-shy about just how aggressive my doctors were being in trying to cure me. Were they being aggressive enough? Were they really trying hard enough? Because sometimes it looked as if they were advised (by the medical establishment = the "standard of care") to pull punches. It seemed to be in situations where the odds were just too long.

A month or so after I posed my “palliative or curative” question to Dr. H, I wanted to schedule an appointment to talk with him about possibly doing more chemo before I went to surgery. The idea was that I could improve my chances of getting a pathological complete response (pCR) if we used more chemo to beat the cancer into utter submission. Take no prisoners! pCR is associated with an improved chance of long-term survival, and I wanted that. I tried to get the onc nurse to set up a time for this conversation, and she kept resisting. Finally she told me that there was no point in my talking to him. He wouldn't do what I wanted to talk about, she said, "because, after all, he is the captain of this ship."

That statement utterly horrified me.

Now I had the message that (1) Dr. H would not fight to return me to NED and give me a chance at a normal life span if I got a recurrence, and (2) Dr. H was in control of everything, not me. My life, my death,…but his decisions. If this was his attitude today, then most likely he wouldn't listen to me in the future, either, if I became metastatic and wanted to fight for NED. I had to get out, in order to try to save my life.

I tried to make sure that my second onc doc, Dr. C, was going to fight for me in the way I wanted, both in the present and in the future (i.e., if I become metastatic). When we began our association in November 2009, I took to her the question that I had been forbidden to discuss with Dr. H: Had we done enough chemo before surgery? Would more be better, in terms of getting me to a place where I was likely to have a pathological complete response?

Dr. C said no to that. She was not very interested in getting me to pCR; she was more interested in getting me to surgery. So was everyone else I asked––and I asked quite a few people, both medically trained and not. So I capitulated and did the surgery when everyone wanted me to, rather than trying to get more chemo first. I wasn’t entirely comfortable with it, but I did what everyone told me to do.

Then I finished my active treatments and had to decide whether or not to take bisphosphonates. I decided to do it, but after reading information on the bisphos clinical trials, my question was how much should I take? The studies showed that bisphos seems to have not just protective effects against osteoporosis, but when given at higher doses it also appears to have protective effects against bone mets and even, possibly, some soft tissue mets. I didn’t get into one of the high-dose clinical trials. But Dr. C was willing to give bisphos to me at a somewhat lower dosage.

This concerned me. Was I really getting enough to do any good? I pressed her hard a couple of times on this question. And this bothered her. I also pressed Dr. M, my second opinion doctor. It bothered him, as well.

Every time I turned around, it seemed, the medical profession was telling me no, we don’t want to fix what is wrong with you as thoroughly as you want to be fixed. We will not shoot for NED again if you become metastatic, we don’t want to shoot for pCR in treating your original disease, and we will not give you the amount of bisphos that we think may have the greatest protective effect against recurrence of the cancer.

I was increasingly alarmed. Increasingly afraid. It seemed as if every time I turned around, I was facing danger in a situation where I had minimal control over how to address that danger. I couldn’t get these people on the same page with me. They didn’t want to fight as hard as I wanted to fight.

Was the mantra of the alternative health movement subtly playing into all of this? The mantra that says the cancer industry doesn’t really want to cure cancer patients because there’s big money in cancer treatment? That the cancer industry suppresses cures that cost much less and are far less toxic, because there is no profit to be derived from them? That they want to keep you sick, so they can make more money off of you? Maybe.

Was my PTSD playing into all of this? Probably. But if I have medical PTSD, how could I have been seeking more, rather than less, medical treatment? Why wasn’t I running as quickly as possible away from all medical interventions that were not absolutely necessary, rather than asking for more?

I’m not sure of the answer, here. But it is quite clear that the most fundamental issue emerging from my PTSD is trust. The fundamental issues have not really been tangibles, like drugs or procedures. Those are merely the playing fields upon which the larger issue of trust has been getting exercised.

In general I tend not to be a very trusting individual. I view the world as a scary and dangerous and difficult place, marked by pockets of goodness and beauty, rather than the other way around. I do not easily trust that I will be taken care of. I feel and behave as if I have to be very careful where I put my trust. Extreme medical situations are not places where I easily and naturally tend to repose much trust. A person who felt more secure in the world and trusted it to deliver good more often than evil would probably react differently.

What would it be like, to be able to feel that way? What would I have to feel, in general, to have that kind of trust, without all of the vigilance and the careful vetting as pre-conditions for trust?

I think it’s not just a question of how it would feel to see the world that way. It’s a question of how I would see myself. How would I have to experience myself, if I were a person who lived in a world that was so safe that I could trust without hesitation, that I expected good more often than evil? What kind of person would I be?

I guess I would have to see myself as extremely valuable. So valuable that most things and most people in my life were working to honor and preserve and uphold me. I would have to see myself as so embedded in a network of relationships and meanings––both small ones and larger, even cosmic ones––that I could not ultimately fail, I could not be forgotten or ignored, I could not be left in suffering, I could not be dropped or abandoned or left behind. I would have to see myself as a part. Not apart.

Enough navel-gazing. Back to our story….

Last summer when I asked Dr. C to promise to treat me aggressively and return me to NED if I became metastatic, she told me she could not make that promise. I told her that I wasn't asking her to promise to cure me, only to promise to try. She just gave me a kind of horrified look and suggested that I might be happier with another onc doc.

I was devastated. To put it mildly.

But I did move on and choose another onc doc. My third one––Dr. A. I wrote down my treatment directives and gave them to her at our first meeting in July 2010. In them, I specified that if I am diagnosed with a terminal illness, my goal is to be treated aggressively with the intent to return me to NED status. Failing the attainment of that goal, I wrote, trying for containment and palliation until my untimely death becomes inevitable is my drop-back desire. I asked her if she had any problems with that, and she said no.

I felt very relieved. Finally, someone I could work with! Reason to hope for the future! I will fight, if I get a recurrence! I will strive to be one of the lucky few––the very few––that make it from Stage IV to NED again and lives out a (probably) cancer-free life for a normal life span! I will do my best to win! And if we don’t succeed, then we will strive for control and palliation. But only after we’ve tried for the very best outcome, first. Only when we’ve tried for life. And I have a doctor who will help me try to do this, who believes in my goal! Yeah! Whew! What a relief!

In the weeks that followed, the weeks of fall and early winter, I lost Jody to a recurrence of her cancer. I began preparing to be a grandmother for the first time. I continued ramping up my work hours. One of us Fry Gals got a recurrence and became very sick again. I began to think seriously about adopting another dog, because I really felt like I might have a future and be able to raise the dog to his old age.

I even began to dread going to my therapist every week. It seemed like such a huge drag to have to focus on cancer all the time. I was ready to move on. The past was the past. I had a new doctor who was on board with my general plans for the “what ifs” of the future. It seemed as if there wasn’t much more to talk about.

And then it all fell apart. Big time.

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I read a press release on December 15th about a talk Dr. A gave at a big international breast conference a week earlier. In the talk, one of her main points was that palliation, not cure, is the goal of ***ALL*** treatment for stage IV disease.

WTF?!!!!

At this point feelings of anxiety and despair rushed in and overwhelmed me. The future was not, in fact, secure. I was still in danger. I didn't really have a doctor who would try to save my life if I became metastatic, after all. I had thought I did. But I didn't. Dr. A bought into the idea that it's not worth trying to get metastatic patients to NED. That instead it’s better to settle for control of the disease and palliation of symptoms. In fact, she not only bought into that line, she was very actively teaching and promoting it!!!!

I was devastated once again. Abandoned by the medical profession in general, with their standard of care for metastatic disease. Abandoned by the doctors who were supposed to be my caregivers. Who I was supposed to trust. Where could I turn to find someone who would really believe in doing whatever was necessary to try to save my life? How could I trust? What did the future hold for me, if I became metastatic? Where could I find a fighter? It didn't look good.

I knew I was going to have to ask her about this when we met for my check-up the following week. I knew I had to find out whether we were on the same page about my treatment, or not. What would she do, I wondered, when I asked her what she had meant in her talk and how that squared with the treatment goals I thought we had agreed upon three months earlier? Would she also look at me with horror and suggest that I find another doctor? Would she be disturbed that I was questioning her? Would she reject me, too?

My PTSD just kept getting worse. Words cannot express how bad it got. I didn’t sleep well and couldn’t eat much. I couldn’t think straight. I was trembling most of the time, and my heart raced constantly. I cried a lot. I walked around in a daze of dread. A horror of hopelessness.

As I waited anxiously for my upcoming appointment with Dr. A, I tried to discuss this situation and my anxieties with Denise, my onc nurse. She assured me that Dr. A and Dr. C both had a number of patients who were Stage IV NED.

“Fine!” I said. “I want to be one of them. If I get a recurrence, I want Dr. A to try to make me one of them.”

Denise said it depends on where the cancer comes back, and how many sites it comes back in. That the doctors treat primarily for control. But I insisted that control is my drop-back treatment goal, and that my primary treatment goal is to get back to NED.

“This really is a trust issue, isn’t it?” Denise observed.

Finally she reassured me: “We will all fight for your cure, Brenda.”

I wrote back: “Call it cure, call it remission, call it NED. Call it whatever you want, as long as there is no detectable cancer involved! And as long as our first goal in case of recurrence is to get there...even if statistically speaking it's not a goal that we are very likely to attain. I mean, after all...some do attain it. Maybe it will be me....Thank you, Denise. I just feel so panicky at the thought that anything other than that would even be on the table.”

But it was hard for me to be convinced by her reassurance. I needed to hear it from Dr. A, herself.

I also tried to discuss all of this with my friends on the listserv. It did not go well. Every time I said that *I* wanted NED as my first treatment goal if I become Stage IV, and every time I critiqued the medical establishment's standard of care for metastatic disease, a few very vocal people on the listserv would say, "You can have a good quality of life just with control of the cancer, and you can survive for many years." As if wanting to be cured and to live out my normal life span was not an option I should want to fight for. As if it was not an option that I deserved to be allowed to fight for.

A couple of people encouraged me to fight for whatever outcome I wanted, if I should become metastatic. Most people on the listserv remained silent. One person wrote to me off-list and told me that I was being selfish and I needed to grow up.

But a couple of the most vocal women on the listserv kept telling me that my desires were unseemly and that I should be happy to settle for well-controlled disease if I become metastatic. They said that I was blaming my doctors for my having cancer. That I was being unreasonable when I was diagnosed by demanding that they cure me and I was being unreasonable now to demand they try to return me to NED if I became Stage IV.

Although I didn’t say this, I noticed that the most vocal women who were castigating me for wanting Stage IV NED were, themselves, Stage IV NED. They seemed to think that I shouldn't want and shouldn’t plan to try to achieve what they had already apparently achieved by accident.

This was the final betrayal. Not only had Dr. A given every indication (via her talk) that she would abandon me to an untimely death if I became metastatic, not only might Dr. A invite me to find another doctor if I questioned her approach and insisted that I wanted to fight for Stage IV NED, but my virtual friends on the listserv had abandoned me, too. It was the last straw. I found myself thinking, “I just want to die. I just want all of this to be over with. I just want to die and get this over with. It’s too hard. I can’t keep doing this any more.”

I knew these thoughts were not healthy, so I resigned from the listserv. At least that was one chorus of voices telling me to give up and give in to cancer that I didn’t have to listen to. So I eliminated them. They had been one of my mainstays of advice and support since I began treatment…but I had to leave. It hurt. But I had to be apart.

I was able to regain a bit of emotional equilibrium after that, but not a lot. I was still left with the problem of where I could find a doctor who would buck the system. Where could I find a doctor who would help me fight back from Stage IV to become NED and cancer-free again? It was very depressing.

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I saw Dr. A on December 22nd, taking my friend, Connie M, for support and to be another set of eyes and ears. (Thank you, Connie!) And to be a witness. A witness to how I conducted myself––whether I was calm and logical, or demanding and hysterical.

I also asked Denise to be there. After Dr. C had dismissed me last summer, Denise suggested that it wasn’t my asking Dr. C to treat me for NED that had been the problem; it was the way I had asked it. (How would she know how I’d asked it? She wasn’t there. What did Dr. C tell her?) It was my approach, she said, that had caused Dr. C to invite me to find another doctor.

So I wanted Denise to be there, this time, to hear what I said. So that she would know that whatever happened wasn’t my fault; it wasn’t because of how I asked for what I wanted. I wasn’t being hysterical. I wasn’t being demanding. I couldn’t prove to her that I wasn’t that way last summer, with Dr. C, but I could do my best to make sure she knew I wasn’t behaving that way now with Dr. A.

Dr. A did what seemed to me to be a particularly thorough clinical exam. In fact, she insisted on doing that first, rather than talking first, as we did in July for our first meeting. I think maybe it’s because my tumor markers are headed upward, even though they are still within normal range. So she was checking me out really well.

After that, we began to talk about whether or not we were on the same page as regards treatment for metastatic disease. I started out by saying that I know that since this was IBC, there’s a good chance it will come back on me at some point in the future. It might be tomorrow, or it might be 20 years from now, if I’m lucky. But it will probably come back. Dr. A said I could die 30 years from now while crossing the street on my way to a wild party, and that I have a 50-50 chance of the cancer not coming back, and I agreed.

Later this really bothered me. For her to bring up the 50-50 figure in the context of a discussion about my possibly living for 20-30 years was disingenuous. She shouldn’t have done that. It wasn’t honest. The 50-50 survival figure is a five-year survival figure, not a 20-30 year survival figure. As a member of a group of women diagnosed with IBC, I have a 50-50 chance of being alive five years from the day I was diagnosed. I have only a 25% chance of being alive at ten years out.

My chances of being alive in 20-30 years are far, far smaller. My chances as an individual may be better…but no one can reliably quantify those. Only time will tell…. But the sobering group stats on survival with IBC were the reason why I was determined to try to get back to NED, if I become metastatic. To make my personal chances of cancer-free survival as good as possible.

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Dr. A didn’t seem alarmed at my insistence that we talk about Stage IV and NED. She didn’t seem threatened. She didn’t come close to inviting me to seek my treatment elsewhere. Not even once.

But she did say things that unsettled me. She said that she has a number of Stage IV NED patients. (This was encouraging. Denise had told me the same thing.) However, she said, she treats for control with all of her Stage IV patients, not for pretty pictures on the images (not for NED). This was very discouraging. It is not what I had told her I wanted, last July, and it’s not what she had said OK to then. But here she was, now, telling me that she doesn’t do for her Stage IV patients what we had agreed she would do for me.

I felt that this “control only” approach was delinquent of her, but I didn’t say as much. I just kept pressing the advantages of being NED at Stage IV, and how desirable that was. I finally pointed out that when I had first come to the clinic, my treatment goal was to get the cancer out. All of it. And if we ever found out that we hadn’t succeeded the first time, I wanted to try, try again. Get it out. Get it out. Get it out.

She said no. You can’t do that. With Stage IV disease, you cannot get it out. Not all of it. (The old “we can’t cure it” dodge of the standard of care, I thought.) She said that even if you are NED at Stage IV, there is still disease present at a microscopic level. (This might be true with Stage III NED, too, I thought. There still might be disease there. This might come back.) With Stage IV disease, she said, it is certain that the cancer is not gone, even if it’s not detectable. It is certain that it will come back. So you can never quit treatment, because if you do the cancer is sure to come rushing back to detectable, problematic levels.

I realized that this is not what I thought would happen with Stage IV NED. I had thought that eventually you could quit all treatment again…just like I will one day do, if my current remission holds. That’s one reason I have wanted to fight for NED, even at Stage IV. So I could look forward to not being on treatment. So I would not have that financial burden of being in constant treatment. So I could be “cured” and move on with my life.

Dr. A continued: It’s not the same when you’re talking about Stage III disease, like I presented with. With Stage III disease, when you become NED the presumption is that you’ve gotten it all out. And the plan is that one day you will not be on any kind of treatment at all. Nothing. But this is never the case with Stage IV patients. They will always be on some kind of treatment, for the rest of their lives, to try to keep the cancer at bay for as long as possible.

Who pays for this? I asked. The insurance companies, she said. What about yearly deductibles and co-pays and lifetime benefit limits, I asked. What happens to patients who don’t have insurance? She just shrugged.

She also said that when she sees an image in which the signs of the tumor have disappeared for a Stage IV patient, she is not particularly excited. She doesn’t want to know whether she can see it; she wants to know whether it’s controlled.

*That* got my attention. Why not, I wondered? Even if she is not really trying to achieve NED, but only trying to achieve control, why wouldn’t she be excited to have accidentally gotten this wonderful result? Why would she be so blasé about it? Doesn’t it mean that her patient has a shot at being and remaining cancer-free now and living out her full, normal life span? And wouldn’t that be exciting?

That was the first crack in the egg. The first indication that she was seeing all of this from a totally different set of fundamental assumptions than the ones I was using. Even though we were using the same terms––like “NED” and “control”––we were viewing the world through different lenses. Speaking different languages. Throughout our conversation, Dr. A made it very clear that Stage IV patients could never stop treatment. Combined with her blasé attitude toward clear scans for mets patients, I began to suspect that she didn’t see NED as life-saving for Stage IV disease, as I did. Not even potentially life-saving. My world began to tilt a little.

If that was true, then Stage IV patients really are going to die of their disease, I thought. Without question. I needed to hear her say that. But she wouldn’t come right out and say so. Instead, she kept wanting to focus on the treatments we have now that can sometimes keep Stage IV patients alive for years with well-controlled disease (but not necessarily NED) and how by the time this is really an immediate issue for me, we may have treatments that can cure Stage IV disease. She kept wanting to focus on “hope,” while eliding “truth.”

Finally, at the very end of our lengthy conversation, I pushed her to the wall.

“Do you know anybody who has Stage IV disease who does not eventually die of it?”

She didn’t want to answer my direct question. She reminded me that she has patients who have been Stage IV with well-controlled disease for more than a decade.

I said yes, and if they go out today and are hit by a Mack truck, then you can say that they didn’t die of their disease. But short of that….?

She fixed me with a steady gaze. “Most people with Stage IV disease die of their disease. That’s right. Most of them die of breast cancer.

“Sooner or later?”

“Sooner or later.”

It was so good to have her admit that, instead of trying to cover it up by diverting the conversation to treatment options, instead.

If I ever get mets, I want that to be the first thing we put on the table between us: It means I’m 99%+ certain to die of breast cancer. I want her to say this to me, out loud. To admit it, up front. The thing we will have to do, after this cold, hard truth has been laid on the table, will be to try to make the end happen as late as possible by trying first one treatment and then another, until there are no more treatment options left.

The dawning realizations that were emerging as a result of this conversation stunned me. I was being overcome by a niggling intuition that I had been fundamentally wrong for a long time about something important, and I could feel my view of reality shifting in tiny increments.

Somehow, she didn’t think of Stage IV NED in the same way I did. Wow. Why not? It wasn’t that we both agreed it was great, but disagreed about the cost of trying to get there for Stage IV patients. It was that she didn’t think it was all that great. Why?

I had to imaginatively project myself into the frame of reference I would have to have in order to react to a newly clear CT scan (for instance) on a Stage IV patient as she said she would react. What would she have to be thinking, I wondered, in order to NOT be excited about achieving Stage IV NED? What would she have to believe?

In asking these questions, I had to unpack what I thought I knew about NED and what it meant. And then I had to compare the two points of view.

What slowly dawned on me, that afternoon, changed everything. It was like the world––or at least, my world––was coming into clearer focus for the first time in a long, long time. Cancer Land began to look a little less like the grotesque house of horrors it has seemed to be, a malevolent and dangerous place. It began to make a little bit of sense.

By the end of the day, my anxiety had decreased dramatically. My heart was no longer racing. I no longer felt like crying. Granted, I still felt like I couldn’t think straight. That’s because I was in shock. I was mentally reeling from stunned awareness––the awareness that things were not as I had always thought they were. That I had been very, very wrong for a long, long time.

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After Dr. A left the exam room, I sat with Connie for a few minutes, put my head in my hands and sobbed. I sobbed in relief that I still had an oncologist. Dr. A never came anywhere near acting like she wanted to disown me. I sobbed with the realization that I might have been wrong, and that I might be on the verge of a new way of seeing things that would make my world seem less dangerous to me. Oddly enough, this new way of seeing things offered less hope for me if I become Stage IV. But it offered more hope for me as a patient.

Then I collected myself and started going over the high points with Connie, saying, “This is what I heard her say. Is this what you heard?” After Connie and I had discussed it for a bit, I was able to formulate a single statement that seemed to summarize the gist of my conversation with Dr. A. So I gathered up my things and went out to find Denise and do a little more reality checking.

“What Dr. A was saying, in brief, is that for Stage IV patients there is no long-term survival advantage to being NED. Is that right?”

Denise beamed. “Yes! That’s what I heard her say.”

I was stunned. “But there is at Stage III.”

“Yes.”

“I didn’t know,” I said, shaking my head. Everything was swimming inside my brain. I was trying to get my bearings. “I didn’t know. I just didn’t know. If this is true, it changes everything.”

Over the next few days, I slowly began to realize that my assumptions about what NED means are true only in the context within which they were formed; they are not universally true about NED in all contexts. I learned about NED in the context of my struggle against Stage III cancer, and what I learned is true as far as it goes. But what I learned does not carry over into NED in the context of Stage IV cancer.

Put simply, NED just means that there is no detectable disease. That’s all the term means. That much is universal, across all stages of cancer. However, what “no detectable disease” implies varies depending on the stage of cancer in which it occurs.

In the context of Stage III cancer, NED carries the promise (not a guarantee) that the patient is very possibly cancer-free and will be able eventually to cease treatment and live out her normal life span.

In the context of Stage IV cancer, NED carries no promises at all. None. You still have cancer in your body, even if you can’t see it. You will never be able to (safely) stop treatment. You will almost certainly not live out your normal life span; the cancer will eventually become uncontrollable and it will kill you.

But I hadn’t known that. I had thought that a part of what made NED, NED was the promise of having a long and disease-free, treatment-free life. I didn’t know those promises were context dependent. I thought that the NED I knew at Stage III, with all its promises, was the same thing as NED at Stage IV. Who wouldn’t want to fight for NED at Stage IV, if that were true?!!

But it was not true. I was wrong.

This being the case, the standard of care for Stage IV disease suddenly makes more sense, instead of seeming neglectful and cruel.

“The goal of treatment for stage IV disease is control of the disease and palliation of symptoms.”

The goal of treatment is not to try to bring the patient back to NED. This is not because NED is so hard to achieve at Stage IV, so why bother to seek it, but because NED is pretty much irrelevant at Stage IV, so why bother to seek it.

NED at Stage III means that very possibly the cancer is gone. NED at Stage IV does *not* mean that the cancer may be gone. Not even possibly. It only means that the tumor burden has been reduced so far that you can’t see it any more.

Thus, what matters most at Stage IV is control of the disease. Keeping it from progressing. Whether you are controlling a visible tumor burden or an undetectable tumor burden (NED) is pretty much irrelevant.

If you have disease at Stages I-III and reduce the tumor burden to NED (undetectable) and it really is gone so that never comes back, you’ve won! You were rendered cancer free.

If you have disease at any stage, including Stage IV, if you reduce the tumor burden to NED status (undetectable) because you’ve had a great initial response to your treatments, *but* if you have not really contained the disease process with those treatments, you will soon have detectable disease again because the cancer is going to rebound and grow back quickly. Call this Scenario A. It is transient NED.

If you have Stage IV disease and if you reduce the tumor burden to NED status (undetectable) because you’ve had a great initial response to your treatments *and* if you are able to keep it that way (if you really do have control/containment), it will probably take longer for the remaining cancer cells to develop resistance to the treatment and then multiply to the point of being detectable. Call this Scenario B. It is a more durable Stage IV NED. Note, however, that while it is durable, it is not permanent. Not for Stage IV.

Here’s the important part: When we see Stage IV NED, we have no way of knowing whether it's the temporary kind or the durable kind. Only time will tell. That’s why Dr. A doesn’t get very excited when she sees a newly clear scan on a metastatic patient. What matters to her is control, not necessarily NED.

What all of this means for Stage IV patients, ironically enough, is that if you have a well-controlled but detectable cancer (you are not Stage IV NED), that is better than being NED in Scenario A! (Who'd a thunk it?!!) Because a transitory NED won't last long! Control trumps temporary invisibility.

This also means that if you have a well-controlled but detectable cancer (no Stage IV NED), it is just about as good as being NED in Scenario B (having a durable NED). Because in both cases, the cancer is stable/contained, and that is really the only thing that matters. Stable is what matters, not necessarily whether the amount of tumor burden that is stable is visible or not.

This is a huge, huge difference in how I thought it was.

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OK. So….

Stable Stage IV NED does not hold out the prospect of a *normal* life span, at least for younger women who would otherwise have many years of life ahead of them. But surely it at least holds out the prospect of a *longer* life span than what is possible by only having well-controlled (but detectable) disease, doesn't it? I mean, all other things being equal, if the amount of tumor in your body is so small that you can’t detect it, surely that situation is highly desirable and thus worth fighting for?

There seems to be conflicting evidence on this point. This is where it starts getting murky, with if-then hairpin curves in the reasoning and various tricky switch-backs in the possible scenarios that can leave your head spinning. At this point in time, this is what I understand to be true:

We know that even if you achieve a durable Stage IV NED, it’s a time-limited achievement. The cancer is going to come back eventually. But will a durable Stage IV NED give you some extra time that the same level of control/containment of detectable disease will not?

In theory, yes. It should. If you have two tumor burdens in the same part of the body––one that is so small you can't detect it and one that is detectable––and both tumors develop resistance to the treatment that is keeping them contained and start to progress at the same time and at the same rate, the tumor that started out smaller might take longer to cause problems (like symptoms or death) than the tumor that started out bigger.

How much longer? I don’t know. I’m trying to find the answer to this question, but it’s hard to locate and may not exist.

Of course, we’re assuming here that both tumors are growing at the same rate. In fact, there is evidence that this does not happen. Tumors grow at a rate that depends on several factors, including nutrient supply. Sometimes very small tumors will grow at a faster rate than larger tumors because they have not yet outstripped their readily available nutrient supply, while the larger tumors have done so. Therefore, the theoretical extra time that having contained Stage IV NED cancer might give you over having visible-but-contained Stage IV cancer is not necessarily likely to happen.

Still, hypothetically, let’s say that the tumors do grow at the same rate and that there is therefore time to be gained by having controlled Stage IV NED disease rather than controlled Stage IV visible disease. If a tumor in your Whatchit will kill you when it gets to 5 cm in size, then a 1 cm tumor emerging from containment and growing at a given rate will kill you sooner than an undetectably small tumor emerging from containment and growing at that same given rate.

So why settle for a contained bigger tumor if you could shoot for a contained undetectable tumor? Why not fight, fight, fight for that bit of extra time that controlled NED (if you can get there!) could give you!!!??

The answer is, toxicities.

If durable Stage IV NED happens by chance, as an artifact of treatment that is intended to try to contain the cancer, then that's just gravy. The goal was containment, and you got such effective containment that you reduced the tumor burden to invisibility. Good on ya’!

Now say we want to shoot deliberately for durable Stage IV NED, and not just accept it as gravy. We want to make it the meat and potatoes of our treatment plan. We want to try for the extra time that having a smaller tumor burden gets us (in theory). We will probably have to do this by using a more aggressive treatment. The risk is that we will have to treat so aggressively that it makes the patient very sick and, in some cases, the patient may die from the treatments. So much for prolonging your life!

Making the patient this sick might be worth it (as long as they aren’t killed outright) if there were a reasonable chance of achieving a durable NED **and** if the side effects caused by the more aggressive treatment were only temporary. Unfortunately, with Stage IV disease, you have to remain on treatment, even if you're NED. So the side effects would not be temporary; they'd be on-going. For the rest of the somewhat longer life you might gain by doing this. Which means you’d have a noticeably diminished quality of life. Longer by a bit (we don’t know how long), but not as good.

Is that what you were really shooting for?

Finally, there's the issue of cutting off options. By using treatments that are aggressive enough to try to get you to a durable NED and then using those treatments for as long as it takes to keep the tumor contained, you are weakening your body. The treatments, after all, are toxic. This means that when the tumor develops resistance to the treatments and roars back into active life (as it eventually will), and you want to throw another kind of treatment at it to try to subdue it once again for awhile (which presumably you would want to do), your body will be less able to withstand the rigors of these other treatments. And this means that in the long run, your life will be shortened because you have made yourself so sick with the earlier treatment that you can't endure other treatments that might work to extend your life later on. Again, so much for prolonging your life!

Despite the fact that this may all sound rather dismal, it's not entirely hopeless and bleak. Sometimes a durable Stage IV NED can be achieved by design, not just by accident, without the treatments causing more problems than they solve. Sometimes, in some cases, a recurrence can be surgically excised or radiation or chemo can be used to eliminate the visible tumor. Whether these approaches are possible in any given situation depends on a variety of factors, such as where the tumor appears, how rapidly it is growing, how big it is, how many of them there are, where the patient is in the history of their disease (first recurrence or second or third...).

These kinds of mets are called oligometastases, and the medical community is starting to recognize them as therapeutic targets and work with them. They are one way of trying to deliberately give a Stage IV patient a durable NED––significantly reducing the tumor burden––and thus offering some extension of life.

But these situations, as a rule, are not the rule. They are exceptional. And they are not the same as returning a patient to Stage III NED, with all the promise (the hope, but not an iron-clad guarantee) that that status holds.

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I’ve spent many, many hours thinking all of this through in the last six weeks, using this new lens to make sense of things I have heard and read over the last year and a half, things that sometimes (often?) seemed nonsensical––or worse––before. I’ve talked to Denise several times to do some reality-checking, to make sure that I am not just misunderstanding things in a different way. She assures me that I’m pretty much right on target.

If everything that I have written above is true, then I find it troubling to remember that at one point, when I was so upset before my conversation with Dr. A, Denise promised me they’d try to cure me if I became Stage IV. She had to know that this is not possible, so why did she say this to me? I’d prefer that she not make meaningless promises just to try to make me happy.

I have sent an apology to the listserv where I had the lengthy discussion that upset me so. I still read the list, but I do not post to it any longer. In part this is because I feel ashamed that I let my anxieties run away with me on the list. I subjected everyone there to the emotional flooding that happened when the press release about Dr. A’s talk triggered another PTSD episode. I know some people understand that I have this PTSD problem…but most, I think, do not. And judging from comments made on the list after I had left, I think they were happy not to have my dissonant voice there any more.

I have not rejoined the list, in part, because I still feel alienated by the general lack of support I received. I still treasure the support of those who told me to go for whatever treatment goals I wanted to pursue, even though I now have some questions about whether those treatment goals are really worth pursuing. But I didn’t get that kind of support from most of the people on the list. And that hurts. In short, I still feel apart, rather than a part. Perhaps, with time, it will change.

I am often befuddled, now, by the way people on my two breast cancer discussion lists talk about NED for metastatic patients. The things they say helped to create my old, erroneous understanding of what NED means for Stage IV disease. The things they say grate on my ear, today, given my new understanding.

When someone announces that they have become NED, people post messages of congratulations and often say, “May you dance a long, long time with NED, the stable boy.” As if NED = stable disease. When this is just not so. They act as if being NED gives them something valuable…when in fact, by itself, it gives them nothing of value at all. It’s stability that gives value…not NED. And the two do not necessarily go hand-in-hand. You can be NED, but not really be stable.

Unless I’m still missing something. Is Denise wrong? Is my new understanding about Stage IV NED also incorrect? Has she told me I’m right on target in the same way she told me, before I talked to Dr. A, that they would try to cure me if I become metastatic? When she says I’m right, in what I wrote above, is she, herself, right?

I have been intrigued by the persistent idea out there in Cancer Land that NED is a desirable goal not just for us Stage III (and earlier) patients, but for Stage IV patients as well. That it gives them something valuable.

It’s not just an idea that floats around on discussion lists where lay people who don’t know much about medical realities can say anything they want. When I spoke with Dr. A, she said that a lot of her colleagues don’t get it, either. That’s why she made the presentation she did at the breast conference in early December––to try to explain that for Stage IV patients, the treatment goal is no longer cure (which is the promise of Stage III NED), but control.

So in a private exchange I asked one of the medical mavens on one of the listservs which she would choose, if she became metastatic and had a choice: stable visible disease or stable NED disease? And why? What would her chosen option give her that the rejected option would not? I assumed she’d choose stable NED over stable visible disease. But I wanted to probe why this is.

You’ve seen those commercials for the new Bing Internet search engine, haven’t you? Bing is marketing itself as a search engine that can more efficiently give you relevant links to the info you are seeking, instead of giving you a lot of random, free-association kinds of links that really have nothing at all to do with what you want to know.

In the Bing commercials, someone is talking to a person, and the person begins to free-associate, spouting a series of meaningless comments based on a key word that the first person mentioned, like “grapefruit.” And the first person just stands there, looking stunned and befuddled, because none of this is relevant to what they were talking about. The voice-over then points out that Bing tells you what you want to know…unlike all these other Internet search engines.

Talking to the medical maven, I felt kind of like I was trapped in a Bing commercial and she was one of the other search engines––not Bing! She said a couple of times (eventually) that stable Stage IV NED is more desirable than stable Stage IV visible disease. But she refused to explain why. I kept thinking that the problem was with how I was posing the question, so I kept re-asking it. Trying to explain more clearly what kind of info I wanted to get at. It didn’t work. She just kept dodging the issue. Kind of like Dr. A didn’t want to talk about the fact that Stage IV patients eventually die of their disease. I finally just gave up.

So I have a new understanding about Stage IV NED. One that makes more sense of the medical literature I’ve been reading for the last year and a half, and one that makes more sense of the behavior of my doctors. But my new understanding does not seem to be consistently reinforced by statements made by breast cancer patients, themselves. In fact, their statements actually tend to support my old understanding. And my new understanding is apparently not even shared by all physicians who treat breast cancer!

It’s a bit confusing.

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It’s also a bit stressful. This lack of a consistent “picture” of Stage IV NED and its significance (or lack thereof) makes me a little anxious. It makes me feel a little bit insecure about the future and what it may hold for me. It makes me uncertain about which approach to treatment I ought to pursue, if/when my time comes.

Who do I trust? Should I pursue the treatment approach supported by Dr. A? Or the one that, according to her, many of her colleagues seem to adhere to––one which more closely conforms to the ideas and attitudes expressed by patients on the listservs to which I belong? One that more closely conforms to my old way of thinking about Stage IV NED? That it is valuable and worth pursuing.

In short, the uncertainty of the whole thing tends to trigger my PTSD. I don’t feel safe. I don’t feel secure. I feel exposed and at risk. But I’m working hard, again, on trying to control it.

The PTSD episode I endured in December, right before Christmas, was brutal. I don’t think I’ve ever been so physically and psychologically debilitated. I can’t keep doing this. I have to find a way out––a way that honors and addresses my fears and anxieties, because dismissing them (“don’t buy trouble; just trust your doctors to do their best”) in order to try not to feel them, feels inauthentic. It feels like lying to myself. Or trying to. It feels dangerous, because it feels like denial of the truth––the truth that I was in danger, that I am in danger.

Jessica Stern is an expert on terrorism and terrorists. She has just written a new book about having PTSD as a result of being raped when she was 13 years old. It’s titled Denial: A Memoir of Terror. When I heard about the book, two weeks ago, I knew I had to read it. I devoured it this last weekend. There isn’t a lot of weighty, intellectual information in the book. It’s an autobiography about an event in her life and how that event has shaped her. Nevertheless, I’m still digesting the book as if it were a weighty academic tome.

She points out that one of the common aftereffects of surviving a trauma is having difficulty trusting others to take care of you. (Bingo. Big time.)

She says that one of the altered states she goes into when she’s stressed by PTSD is to get very, very sleepy. I think that’s probably the source of a good deal of the fatigue that I’m continuing to experience.

She comments, off-handedly, that hell in Hebrew thought is a place where evil is ultimately destroyed. It reminds me of the quote attributed to Winston Churchill: “If you’re going through hell, keep going!”

And that is what I’m trying to do. Just keep going. Get through it all and find the other side. To ultimately destroy the demons that haunt me. Not by engaging in the self-deception of denial of what I feel, a denial masquerading as “acceptance of my diagnosis” or “not buying trouble” (When trouble has already bought me!), but by being as honest with myself as I know how to be.

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On my desk at work I have a tiny, pocket edition of some of the poems of the Islamic mystic, Rumi. In December, when I was in the midst of the flood of PTSD emotions and barely hanging on, I opened it at random and found a poem called “The Guest House.” A shortened version goes like this:

This being human is a guest house
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

After advising the reader to accept sorrows as well as joys as gifts from the Beyond because they may be clearing the way for later happiness, the longer version of the poem states:

And if the pearl is not in sorrow’s hand,
let it go and still be pleased.

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One of the professors I had when I was an undergraduate, John Carmody, died of incurable multiple myeloma when he was 55 years old––two years younger than I am, now. He and his wife, also an academic, were prolific writers. After he was gone, Denise Carmody published some of John’s poems that he wrote in his personal journal during his cancer journey.

In late December, after the PTSD had struck and then begun to get resolved because I got new information, I wrote to her to ask if John considered himself “healed” by having cancer, because that’s the popular idea of what cancer means. That cancer is some kind of great spiritual experience and those who have it, although they may die from the disease, are in some mysterious way “healed.” A few days later, she wrote to tell me that she was praying for me:

Brenda,
Each morning I used one of John's psalms to focus my mind before I try to pray. This morning I used the one on page 56. I prayed for you and I thought that it might be an example of what John would call "healing."
D

I responded:

Thanks, Denise. I get the distinct impression that I have not done (and am still not doing) this cancer thing "right." I'll look up the page you suggest when I get home tonight.

She wrote back to say:

How in hell does one do cancer "right"? Are you asking more of yourself than God would ask?

And this was my response:

Denise,

Instead of bringing out the best in me, as the cultural expectation holds for cancer victims (the cancer victim who *always* fights *courageously* and is thus ennobled by the experience---then dies as a revered martyr in the fight against cancer), it seems to have brought out every lurking fear and every piece of anger in me. Nothing noble. Nothing trusting (far from it!). Nothing peaceful.

It has resurrected and aggravated ancient medical PTSD that makes me so filled with anxiety sometimes that I can hardly function. It has made me more afraid and angry than I knew I could be.

That's why I find John's book so comforting. In it, I see John NOT being the brave cancer patient, fighting with chin held high, an exemplar of courage for all of us, even in the face of certain defeat (i.e., death).

Instead, I see in it John as a human being. I see him afraid. I see him angry. I see him holding God responsible for what is happening to him, not letting God off the hook. I see John mournful about what has befallen him. I see him resigned. And sometimes I also see him at peace, accepting, noble....

I see the whole gamut of human emotions, in that book. Not just the noble, accepted ones for cancer patients.

Personally, I find peace with all of this only in very, very rare moments. And I don't know how to make those moments last, or how to make them occur more often, nor how to share their existence (when they do occur) with anyone. I don't know how to explain (to someone else) these very rare moments, in the larger context of the fear and anger that has emerged in the wake of my diagnosis. This fear and anger and mistrust (of the medical profession) that permeates my life, it seems. That has come close to taking it over. I only know that I value those rare moments, because...

Most of all, having cancer has been a bitch. I don't trust the medical establishment to take care of me; I feel I must always watch my back with them because you never know what they're going to try next. Or mistakenly do next. Or whether they're going to try hard enough, next. (A real issue lately.)

I feel, in short, that I have *not* been healed, in my cancer experience. Instead, I've been made raw and gaping and open and exposed and vulnerable––wounded on so many levels. I don't know how to find some salvation in what has happened, is happening, and may yet happen in the future.

Reading some of those same feelings in John's book is one of the things that helps. Thinking that maybe this cultural expectation that cancer "heals" the people who get it, even if it kills them in the end...maybe that is all it is. A cultural expectation that is not worth the effort it takes to articulate it. Or that is not worth the effort it takes to feel worse than I already do, anyway, because I'm not living up to that expectation.

-----------------

Here is what page 56 of John’s book says:

The worse our health or turmoil
the more our prayers to you change.
Troubled people have little stability.
We move up, down, to the side
all in the same day.
Can you smile that we are so flighty
and not be put off by our skittishness?
Can you wait patiently
for maturity to overtake us?
O God, you have been waiting
since first we came out of the womb.
We have lived hither, yon, two towns over
the entirety of our conscious life.
So be in the depths of our spirits
where you hold back the void,
our rock, fortress, salvation,
a vane stable in all weathers.
Be yourself our constancy.
Keep us yourself from hopeless idolatry,
the inflation and deflation that toss us up and down.
And at our end
take us to yourself
with whom there is no variation or instability.
(From God Is No Illusion)

---------------------
This morning the ladies on the BC Mets listserv were talking about the cultural expectation of the “courageous” cancer patient––an image that is particularly evoked in Pink-tober and in obituaries after the cancer patient has died. So I offered what I thought a more honest obituary of a real cancer patient ought to say:

Brenda Denzler died this week after a 40 year battle with cancer. [Since my battle just began in 2009...I'm being optimistic, here!] She was not a courageous fighter. She bitched, moaned, ranted and raved on a regular basis to her therapist, to friends unfortunate enough to have caught her at a bad moment, in the private pages of her journal (oy!) and in the public space of her blog. Her treatments and the cancer made her sick and weak. They did little to improve her disposition. Despite this, sometimes she laughed and many times she enjoyed life, even in the midst of the battle. But she also spent time crying, being depressed and being anxious, because this was a battle that she knew she would eventually lose. Brenda Denzler was a fighter, and in her battle against the ravages of cancer and its treatments she was not a coward. But she was not courageous, either. And she was definitely not ennobled by the experience––turned magically into some kind of better human being because she had cancer. Still, all in all, she will be missed.

Apparently several of the ladies on the listserv are still laughing their arses off tonight. :)

12-12-2010 Update

2010-12-12T14:42:00.001-08:00

12-12-2010 –– (A Two-Month) Update –– Breathing, Pink-tober, Dreaming of Dangerous Doctors, Good Friends and Glorious Weather, Euthanasia, Alternative Medicine, An Anniversary and Trust

Welcome back, everyone. I’ve been thinking about my blog––why I write it and why all of you read it. I’ve decided it’s kind of like reality TV…without the TV part! But it’s really real. Of that much, I can assure you! This, then, has been my reality for the last two months:

------------------------

After Jody died in early October, I really began to focus more of my attention on my fear of being intubated. What if something like that happened to me? What if I needed to be ventilated for a time because I couldn’t breathe, and they needed to try to get more oxygen into my system? How could I handle it? On a scale of 1-10, my fear of being intubated is about 250.

I fear not being able to control my own breathing, but having a machine do it for me; I fear gagging on the breathing tube, since I have a very sensitive gag reflex––just ask my longsuffering dentist! I fear being in a vulnerable position––intubated and tied down so I won’t rip the tubes out. (They do that, you know. Tie you down.) I fear wanting the tube taken out because I am gagging on the tube or because I can’t get enough air through the tube (it happens), but being ignored. Or asking to have the tube taken out NOW and having the respiratory therapists come in an hour or two, rather than coming within the next five minutes to get me off the damned thing! And meanwhile I’m gagging and can’t get enough air and can’t move because I’m tied down. I fear the extreme depersonalization.

So I talked with one of the senior nurses in anesthesiology about what happens when people are intubated. She said that modern ventilators are usually set to follow the patient’s lead on breathing, so it wouldn’t really be totally out of my control. The machine would pace itself according to the physical signs from my body that I needed to take a breath of air. Even if I were unconscious. However, sometimes patients do feel that they can’t get enough air through the tube that is used on them, and they experience air hunger and anxiety. (Shudder!)

I asked her what I could do, now, to try to get over my fear of being intubated, so that if it ever happens in the future, I’m less freaked out about it and more able to cooperate with my care rather than fight it and be afraid of it. She suggested that if I wanted to get a feeling for what it might be like, to be on a ventilator, I should get a drinking straw and try to breathe through that.

This seemed like a reasonable thing to try. The exercise has been helpful, but not totally reassuring. Some drinking straws have a larger diameter and some have a smaller diameter. I do well with the larger diameter straws. I can get enough air, and I can control the anxiety that mounts in me, the longer I try to breathe that way. The smaller straws, however, just aren’t big enough to give me enough air, and I do have more trouble controlling my anxiety. What happens if they put one of those in, rather than a larger one?

I also talked with a woman who had been intubated and on a ventilator when she was critically ill. She said that she only vaguely remembers the experience and certainly doesn’t remember the feeling of there being a tube in her throat.

Maybe if I were so sick I needed to be on a ventilator, it would not be a focus of my attention the way it seems right now like it would be? Maybe anything that kept me breathing would be a welcome relief, and it would all be more OK than I think?

------------------------

In late October there was an article about me in the University Gazette, the university-sponsored faculty-staff newspaper. I gave a talk for Breast Cancer Awareness Month to the Employee Forum, where I had been serving as vice chair right before I was diagnosed last year. After the talk, a reporter from the Gazette said they’d like to do a feature piece on me, and I said yes.

But I had some stipulations. I wanted the piece to be about IBC––what it is and how to detect it––rather than just about me. And I tried to make sure that it didn’t turn into one of those wonderful “Pink-tober” fluff pieces in which the breast cancer patient is depicted as little short of a hero and a saint for having battled cancer. As I told the reporter, he knew from first-hand experience that I was not a saint before I got cancer, and having had it does not now make me one. And there is nothing particularly “courageous” in fighting cancer, either. You just do what you have to do. You have few choices. You have to do something,…unless you want to totally ignore it and go home and die.

With the promise that he would not try to “prettify” what it means to have breast cancer, we negotiated the following piece:

http://gazette.unc.edu/10-27-10-webpix/10-27-10-gaz.pdf –– page 10 and 11

You’ll note that they had to insert the “life transformed by cancer” angle, at the end, to conform with our popular cultural myth that having cancer is an ennobling, life-transforming (in a positive way) experience. But all in all, it’s not a bad piece. (The picture of me, on the other hand, leaves something to be desired!)

--------------------------

Cancer as an ennobling experience. Um-hum. Right.

October was, again, Breast Cancer Awareness Month. I experienced it this year in a way rather different than what I have in the past. Last year I didn’t pay too much attention to it––I was too enmeshed in my treatments. But this year, I really could pay attention to what was happening all around me. The medical and cultural messages that were being conveyed. And I’m here to say, as a “pink” breast cancer survivor, that it is a real mixed bag.

“Pink-tober” was originally begun, I suppose, to try to talk publically about a subject that used to be unmentionable in polite society––breast cancer. To raise awareness. To remove the stigma and shame that seemed to inhere in having the diagnosis. And also to remove the fear of getting such a diagnosis. To let the world know that women can be cured and that early detection is very important. All of these are good things.

But there are also some very wearing things about Pink-tober. These things were the topic of quite a bit of discussion on the BCMets and the IBC listservs that I belong to.

First is the constant “rah-rah!” about having cancer. The stories of all of the survivors, who are invariably painted as these brave, noble, saintly creatures. Cancer, itself, becomes an ennobling experience in the hands of the press, during the month of October. Having breast cancer seems to make us all into such wonderful, high-minded, noble, self-less, brave, spiritual people who have our shit thoroughly together (unlike the rest of you mere mortals), according to the messages we hear over and over again. Pink-tober makes cancer sound like such a grand spiritual experience, such a tool for psychological growth, that it’s a wonder we aren’t going out and urging people to get the disease, instead of trying to tell them how to avoid it!

This, to put it bluntly, is bullshit. Anyone who has been reading my blog surely understands how incomplete (at best) or even untrue (more likely) such depictions are. Unless, of course, you are naïve enough to believe that most people with cancer really are Pink-tober’s wonderful, high-minded, noble, selfless, brave, spiritual people and I’m just an unfortunate screwed-up loser on whom the benefits of cancer have, sadly, been lost.

As a member of two intimate communities of women with breast cancer, I can assure you that if I’m a screwed-up loser in the ennobling world of cancer (which is possible), at least I am not alone. I have my own, unique ways of being screwed up, as we all do. But I am not alone in personally falling short of the ideals of cancer patient-hood that are set by the Pink-tober hype.

The second wearing thing about Pink-tober is that while those who have died of breast cancer are remembered, it is the survivors who are the main focus, and those survivors are almost uniformly survivors of early-stage disease. In fact, early-stage breast cancer is *the* face of breast cancer each October. Those who are living with Stage IV, metastatic disease…they get a lot less press.

The truth is that despite all these races and runs and pink T-shirts, 30% of the early-stage women who are feted and held up as exemplars of survivorship will go on to develop “incurable” metastatic disease that will kill them sooner or later. That is a face of breast cancer that is more well-hidden in the month of rah-rah pinkness.

As a society, we are devoting a lot of our funding resources to detecting and curing early-stage breast cancer. Early-stage breast cancer is localized in the breast. It does not kill. That’s why we devote so many of our resources to it. We want to try to catch it while it’s still localized and relatively (!) easy to treat. Because once it moves out of the breast and becomes metastatic, it is deadly. So we seek to find it early and hit it hard, before it can become a killer.

When breast cancer becomes metastatic, though, as a society we mostly throw up our hands and walk away. We talk about making Stage IV women as comfortable as possible for as long as possible. We talk about palliative care. We talk about the need to make sane end-of-life decisions. We talk about hospice.

We do not talk about trying harder to cure them. But we should.

The bouncy pink “rah-rah” spirit of October each year doesn’t like to focus on these truths. But it should.

The Breast Cancer Sisterhood is not just the women with early-stage disease. It is not just the women, like me, who are now NED. It is not just the women who have already died. It is also the women who are living, sometimes for years, sometimes not very long, with metastatic disease that is almost certainly eventually going to take their lives. We need to do better by them.

--------------------------

(11-7-2010 – 5:15 a.m. EST) I have just woken up from a dream that has left my heart beating wildly. The emotional impact was intense. Before falling asleep, I finished Atul Gawande’s book, Better: A Surgeon’s Notes on Performance. This is the dream I had:

There was a gathering to hear a famous doctor speak. I had a ticket. Front row seat. On the day of the talk, the room began filling fast. This man was quite a celebrity. I got to my seat for the talk and noticed that two of the talk organizers were going out to the waiting crowds outside who had no tickets and giving out some spares at random. My friend Coralyn got one, and my friend Nora got another. I was looking for them to come in the doors and have them sit with me, but just as I did, my row of four seats was moved down the street and so far away that I couldn’t even see where it had gone. They were moved to jockey for a better position to see the speaker, even though they were already the front-row seats.

I tried to find where they had been moved, but soon the talk would start, so I gave up on trying to find my row and went to find Nora instead. She was standing way on the periphery of the room. I decided I wanted to be as close as possible to the speaker, though, so I went to the front and found some seats that appeared to have notebooks on them, as if saving them for other occupants. No one was preparing to sit in them, though, so I took one notebook off so I could sit there. A waiting nurse turned around and saw that I wanted a seat and took other notebooks off, saying that there were seats available there.

The guest speaker began by asking a question of the audience. Someone sitting near me responded by saying that it was well known that some nurses got their jobs because of some frivolous reason (I forget what it was), not because they were qualified. She made other dismissive and unkind comments about medical professionals casually, as if they were matters of fact. And she said them as if she expected the guest speaker to agree with her.

I was rather shocked that she had bought into all of the negative things and gossip she’d heard, as well as being a bit embarrassed by it. She kept glancing at me, as she spoke, as if including me as a sympathizer in the things she was saying. I realized that she was someone I knew, and I really didn’t like the idea that I might be associated with all of her comments.

To my surprise, the guest speaker simply said to her, in response, “Doctors are dirty. Doctors are dangerous, because they’re not like me.” And he stopped. He didn’t say anything more.

I thought that he meant that all doctors were not like himself. I expected more words from him. Some explanation of what he meant. But none came.

Then I ventured a comment, to amend what he had said. “I would perhaps say, Doctors are dangerous––I don’t think I’d say ‘dirty’––because they’re not like me.”

I realized the ambiguity of the word “me” here––that it could refer to the guest speaker or to any speaker at all, including myself. So I went on. “And they’re not like patients…they never really can be. Understandably…” and my words trailed off.

Just then there was a flurry of activity surrounding me. My bed was being pulled out of the front-row line-up, and I was being wheeled out of the room and down the stairs. Nurses and others were trying to put some kind of clear plastic tube into my chest (through the skin, not down my throat and into my windpipe). I realized I was starting to black out. Someone shouted something about my heart rate, and I realized that I had been hooked up to various kinds of monitors all along, and they had indicated that something was wrong with me before I was even aware of it.

I tried to put my arms out and hold us up at the doorway, to prevent them from taking me away from the speaker, whom I really wanted to hear. “I’ll be fine!” I kept saying. “Just leave me alone. I’ll be fine.”

But I realized, as I began to black out, then come to a bit, then black out again, that I was not fine. I decided to just relax and let them do whatever scary, invasive thing they were wanting to do. Because clearly I was not on top of my game. Something was wrong, and I was not in control of myself. I couldn’t be.

As they began to bring me around again to full consciousness, I turned to Edith, the nurse practitioner who was my first contact the breast clinic, and said, “Swear to me that you’ll tape this speaker. I want to hear what he says. Promise me you’ll tape his talk so I can listen to it.”

She swore that she would, and indicated that the nurses and doctors taking care of me, who were still buzzing around and busily doing things, were going to miss his talk, too. And I thought, “That’s right. They may want to listen too.”

And then I woke up, with my heart beating wildly in utter panic.

-------------------

I was driving home thinking about my “Doctors are dangerous, because they’re not like me” dream. It’s clear that I’m working at a deep level on my issues of trust. All of this reading of medical autobiographies––of doctors (and some nurses), how they become doctors and how they practice their craft––has been supposed to make them more human to me. Less scary and intimidating.

Yet in a way that’s the exact definition of the problem. They are human! They make mistakes, and I don’t want them making mistakes on me! So what I’m really doing in my reading program is trying to get comfortable with the fact that doctors are only human. That they make mistakes, and that it could happen to me.

But I realized that if you look at the whole hepatitis thing, it already has! We never could figure out how I’d contracted hepatitis, when I was so very young. One plausible theory is that I had caught it from dirty instruments during my tonsillectomy, a couple of months before. If that’s how it happened, then this mistake almost cost me my life, and certainly has caused considerable trouble for me in the last year or so!

So what I’m trying to do, with this reading, is not to humanize doctors, but to become comfortable with (reconciled to) their humanity––and all that that means about fallibility.

As I was thinking about this, I noticed what song was playing on the radio: “I’m Only Human,” by The Human League. The chorus, which got my attention, goes: “I’m only human, of flesh and blood I’m made, human, born to make mistakes.”

Synchronicity again.

---------------------

I have begun to realize that doctors are one of the only segments of our society that we give permission to potentially hurt us––indeed, potentially kill us—with relative impunity. Police are another. Police wear guns and have a regulated form of social permission to do us harm, if need be. And if they do harm us, that’s OK. An investigation is conducted, if they discharge their guns. But almost always, they are not found to have engaged in wrongdoing. They are vindicated in what they did.

In like fashion, doctors are given social permission to prescribe drugs and do procedures that may harm us. The difference is that with police we know the intent is to harm, if they exercise their socially given powers and draw their firearms, while with doctors the intent is to do good, when they exercise their socially given powers and take out their prescription pads and scalpels.

However, even though the general intent is to do good, when they make mistakes, doctors may kill us just as surely as police officers who fire their weapons—and with less public scrutiny as a result. That’s what all the medical biographies I’ve been reading say. The authors talk not just about the patients they have saved, but also about the patients whose deaths they contributed to or plainly caused by some act or failure to act on their part. Patients who otherwise would probably not have died, if it had not been for their mistakes. And these doctors walk away from these events with, at best, a review of the circumstances in their institution’s closed-door Morbidity and Mortality meetings.

I’d be willing to wager that your average physician has killed (or contributed materially and without just cause to the death of) more people than your average cop. The medical biographies say that the average resident, alone, kills three to four people during their period of residency. It is just an accepted part of what it means to be a doctor. It is accepted, by doctors and hospitals and medical schools, that this will happen. The goal, of course, is to not have it happen at all. But it does happen, and doctors in training are warned that it will—they are prepared with the understanding that they will make mistakes and that those mistakes will eventually kill a patient. It’s an occupational hazard.

Most of the time, when it happens, the doctor (unlike a policeman) is not placed on desk duty until an inquiry can be completed…unless the doctor’s negligence was so gross as to be a potential legal liability to the hospital. In medical culture, these things just happen. It’s just accepted that they do. Case closed.

We, as patients, are not similarly prepared. We are not prepared, in our encounters with doctors, to know that they may kill us. We are only prepared/conditioned to believe that they are going to help us, and on that basis we are expected to place extreme amounts of trust in them. To place our lives in their hands.

I keep trying to think of other professions in our society where the power to kill us is legally reposed in the hands of others, and I can’t come up with any. Law enforcement and physicians. That’s it.

------------------

Not that doctors are necessarily cavalier about this. Atul Gawande is a surgeon and author of The Checklist Manifesto: How To Get Things Right. The book is about his efforts as part of the WHO to develop a surgical checklist that would improve outcomes in surgeries around the world. This is what he wrote on page 150, where he was talking about how different the surgical theaters were around the world, and yet how similar:

You still had a human being on the table, with his hopes and his fears and his
body opened up to you, trusting you to do right by him. And you still had a
group of people striving to work together with enough skill and commitment to
warrant that trust.

It makes me cry. Surgery is so scary. To know that one surgeon feels like this…. It’s touching.

-----------------------

In his book Better: A Surgeon’s Notes on Performance (2007), Gawande writes:

The paradox at the heart of medical care is that it works so well, and yet never
well enough….Whatever Hippocrates may have said, sometimes we do harm. Studies of serious complications find that usually about half are unavoidable….But in
the other half I will have done something wrong, and my mistake may change
someone’s life forever….Are doctors who make mistakes villains? No, because then
we all are. But we are tainted by the harm we cause (p. 106).

He goes on to talk about alternatives to malpractice and tries to show how the alternatives would work using as an example a situation where every doctor has just one “injured and deserving” patient each year. What gets me is that he says, parenthetically, that this is a “highly optimistic assumption”! (p. 108)

My question is…how do I keep from being someone’s optimistic “one”?

--------------------

In mid-November, another one of the women on the BCMets listserv died. Her partner logged onto “Beth’s” account one day to tell us that Beth had died quietly in her sleep the night before and to forward a final email that Beth had written to all of us.

Beth lived in Australia. Her doctors had told her about a month earlier that there was nothing more they could do for her and that she had only a few weeks to live. Single-digit weeks, not double-digits. They advised her that she was unlikely to see New Year’s Day, when she had been planning to fly over the Antarctic (visiting each one of the continents was on her bucket list), so she decided not to buy the plane tickets. Instead, knowing the end was near, her friends and her partner made her birthday an affair to remember, if descriptions of the event are to be believed! She told us afterward that it cost her dearly the next few days in terms of fatigue and pain, but it was a lot of fun.

Two weeks later, she was gone. Died quietly in her sleep one night. Just gone, like that. I thought how wonderful it was that she had died like that. Quietly. In her sleep. That’s the way to go. And I was touched that Beth had had the presence of mind to know that she was dying so immanently and to write us that one, final message.

Duh. It took me 24 hours to put it all together. Beth died quietly in her sleep because she took her own life. That’s why it was a calm, peaceful passing in the night. That’s why she knew the end was near and was able to write a final message for the listserv.

That, my dear friends, is courage. Not to hang desperately onto life until the very last breath, but to give it up willingly. Not to let cancer have the final word, but to go out on one’s own terms.

---------------------

I imagine that most oncology psychiatrists would have said that Beth was depressed and would have wanted to give her antidepressants to help her cope better, if they had known what she had planned.

I think she coped hellaciously well. She was chatting and offering advice and ideas and sharing stories with those of us on the listserv right up to the end. And after it. She was no depressive with suicidal intent. She was a woman being eaten alive by cancer, and when there was nothing more to be done to try to avert the inevitable, she calmly and courageously put an end to it all.

Just last week, another woman on the BCMets listserv died. Her husband reported her final hours in these terms:

Yesterday, around 14:00 she started breathing heavily. Her lungs got saturated
with fluids.

My beloved wife died in my arms an unpleasant death. She
was gasping for air with such intensity as her airways got blocked slowly,
slowly as minutes went by. She passed away yesterday @ 14:45.

I would rather die like Beth than like this man’s wife. I don’t know if I will have the courage to do that. I suspect I will not. I think Beth is a stronger person than I. I mean, *was* a stronger person than I. She was not depressed; she was very, very sane.

I like to imagine that my Dr. D, whom I like so much (despite my hurt and anger over his behavior that I wrote about in my last blog), would agree with me. I like to imagine that he would not have wanted to medicate Beth, if it came down to it, but would have sat and quietly held her hand as she breathed her last.

-------------------------

Because of the trouble I have doing some things, now, due to lymphedema and my arm’s limitations, I have been blessed to have the willing help of a friend twice this fall. Tom was the one who helped me put tin roofing on my firewood racks last summer, before I got sick. (I was actually sick at the time…but just didn’t know it yet.) He’s also helped me put rain gutters on my garden shed, in previous years. The point being, he knows that I can be rather Monk-ish (i.e., anal-retentive and picky-assed) about things…yet he still offers to come help me out! That’s a real friend!

This fall, he came out to help me put down some gravel in front of my firewood racks so that I don’t have to wade through mud and muck all winter to haul in firewood. The path will also, hopefully, make it easier for me to use the rolling cart I got to haul the firewood, since I can no longer carry as much as I used to.

Tom also helped me clean the siding on the north and east sides of my house, which don’t get much sun and therefore tend to slowly collect a thin film of mildew here in the humid South. I got out one warm weekend a few weeks ago and washed down the siding with a vinegar and water solution, treating the project like a set of stretching exercises to help with my arm’s range of motion and strength.

But I couldn’t reach very high up, and I was afraid to climb up a ladder all by myself in order to try to reach higher, while simultaneously dipping a long-handled brush into a bucket of water and vinegar––all without falling and without over-extending my arm and hurting it more. So I asked Tom if he’d help me, and bless him, he did. In fact, with his help I was able to clean the north side of the house all the way up to where the attic peaks. I’ve never been able to do that before.

So I am extremely grateful to Tom and want to give him a shout-out. :) Thanks, Tom!

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We had some glorious weather, this fall, in the Piedmont of North Carolina. Despite the dry, dry weather, some of the leaves on some of the trees turned simply STUNNING shades of yellow, orange and red, mixed in with the remaining greens. One day I found myself just wanting to climb up in the tree limbs and sit among all of that wonderful, amazing color. To swim among the leaves and the sun.

Odd to think, isn't it, that these brilliant things are what death looks like in the deciduous tree world? They are leaves that are dying.

I hope I'm like that. When my number is up, when the thread of my life has unraveled to its last inch, I hope that I am like those leaves. That I go out with such flare, with such style, with such color that it makes all those around me press the "pause" button on life for a minute and feel the same kind of peace and joy and wholeness that those fall days gave to me..... The sense that even in the face of death, things can be wondrous and beautiful.

---------------------

Within a few weeks, our weather had changed. Last weekend we had a glorious, overcast, cold day highlighted by enough snow flurries and sleet that it made it interesting, outside, but not so much that it stuck and caused problems. This was a gift of a day, with my warm wood stove keeping my house at 85 degrees, the radio on quietly in the background, a cup of hot cinnamon tea at my fingertips, my fur children lounging around nearby….

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I’ve been trying to create a bucket list. Before I was diagnosed last year, I thought I had about 30 years of life ahead of me, yet. I figured I’d probably die in my 80s, given that almost all of my grandparents died well into their 90s.

Now that is not so certain, though, and one of the questions I am asking myself is how I want to live the rest of my life, assuming that my days will be shorter than I had imagined. I was asking myself “what next” before I got sick. A bucket list, I guess, is kind of like “what next” with a bullet.

Trouble is, I’m not sure! I don’t know what I want. I try to think of things I’d really like to do, and I’m having trouble picking anything.

I think it would be fun to act––either on stage or as part of a Hollywood movie or TV show. Teaching is kind of like acting. So is public speaking. It’s really an exchange of energy. When it goes well, you get a real charge out of your audience, just as they, hopefully, get a real charge out of seeing a story enacted before them. I want to experience that exchange again.

I have wanted a screened-in widow’s walk for a long time, so that I can sit up high over my house and watch the stars at night. (The screen is to protect me from the mosquitoes during the warm weather.)

What else? I can’t figure it out.

If I don’t have a bucket list, does that mean I can’t die yet? Or that I’m really more ready to die than I want to admit?!!

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I’ve been working gradually more and more hours. Now I’m getting in close to 30 per week. At first, I was coming home and collapsing as soon as I got the animals fed. I had very little energy left to do anything else. Now I on some days I have an hour or two before I collapse, so that is progress.

Still, there are nights when I finally plop down on the sofa and burst into tears out of sheer exhaustion. And I have hand-foot syndrome most of the time, now. At first, I noticed it flaring only when I got overly tired. Now my palms and the soles of my feet tingle and burn most of the time. This is probably a sign that I’m pushing too hard most of the time and that I need to cut back.

But I also need to ramp up my work hours as quickly as possible. The State is facing another big budget shortfall for the coming fiscal year, and more layoffs will no doubt be visited upon State employees. I need to try hard to be a valuable employee, not a recovering sick one, because I cannot afford to be laid off and lose my health insurance. If that happened, I can’t afford to pay for Cobra coverage. I’d just have to go without insurance. And *that* is almost guaranteed to shorten my life!

I got the bill from my first Zometa infusion. It’s more than $3400, with my share of the payment being more than $450. For *one* infusion.

Thank God I only have to have them once every six months. If I get a recurrence, it could be once every month. How will I do that? How would I do it if I didn’t have health insurance?

It’s a really sad commentary on life that you have to choose to die rather than get treatments that you need because you simply can’t afford them. We do put prices on human life. All the time. It’s implicit in a lot of what we do. Or don’t do.

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I’ve been doing a little reading in cell biology, trying to understand what makes cancer happen and why it recurs. Why does it become metastatic? Here’s what I understand, so far:

• Cancer cells divide rapidly, unlike most cells in the body, and as a result
they have a higher capacity than most cells to evolve to overcome assaults like
chemo and radiation. Many of the cancer cells die in response to the treatments.
But if any do not die, their rapid replication and plasticity give them a nasty
survival edge.
• In some cases, cancer cells turn their local micro-environment into a pro-cancer place, subverting the actions of healthy cells (like immune system cells) so that they wind up helping the cancer live instead of attacking it.
• Some glands in the body, such as the thymus or the bone marrow, may protect cancer cells from the depredations of treatment, allowing them a safe harbor to weather the treatment storm and thus an opportunity to continue growing and developing “feet” to travel with.
• In some cases, cancer cells carry “friendly” normal cells with them from their
original locations, as they go adventuring throughout the body, in order to help
create a more hospitable environment for themselves in whatever organ they
decide to set up shop next.

These are the reasons, as we now understand them, why treatment doesn’t always work. When a non-metastatic cancer has been “poked” by treatment and responded in this fashion, it becomes more intractable. More hard-headed. More resistant to further treatment. And more likely to become metastatic and go adventuring throughout the body.

But that doesn’t mean that metastasis happens only after unsuccessful treatment. We don’t know for sure just when cancer cells become metastatic, moving out of the region where they first originated and traveling to other areas. Even tiny Stage I cancers may disburse cells throughout the body, where they can lie dormant for some time before roaring back to life.

When cancers that were already metastatic respond to treatment in one of the ways listed above (which they almost always do), the patient becomes sicker, both because of the effects of the growing cancer and because of the toxicities caused by the treatments. This means that they have to move on and try another toxic treatment––one that, hopefully, will stymie the cancer for awhile longer but not cause too much more physical debility for the patient.

The average length of time that treatments for metastatic breast cancer work is 4-6 months per treatment. The current “standard of care” for metastatic breast cancer is to string together a series of such treatments for as long as possible, each one taking its toll on the physical well-being of the patient, each one ultimately failing, while the cancer itself also takes a toll on the physical well-being of the patient…until there are no more treatments that will work and, between the effects of the cancer and the cumulative treatment side effects, the patient is too sick to live much longer.

Gawande, in Better, tells the story of the Apgar scoring system for newborns. Apparently it was developed by a doctor, Virginia Apgar, who got tired of seeing babies “born malformed or too small or just blue and not breathing.” These babies were invariably considered “too sick to live,” so they were placed on the side, “out of sight, and left to die” (p. 186).

Apgar devised a scale to measure various aspects of a newborn’s condition, and thereby gave physicians the idea that there were discrete, measurable things that could be managed in the care of newborns and that could, hopefully, result in saving those babies that were born small, blue or not breathing. This new scale of hers, which we now call the Apgar scale, pushed doctors to innovate in quantifiable ways to improve patient care. And it did! Babies that would have been put quietly on the side to die, years ago, are routinely saved today.

It seems to me that it’s much the same for women with Stage IV breast cancer. The standard of care for their treatment says that they are too sick to live for very long. They cannot be brought back to health. They can only be maintained for a longer or shorter period of time in a downward spiral of well-being. This judgment about their health prospects results in their being placed on the side, out of sight of most cancer research, prescribed a series of treatments designed only to palliate their symptoms (which is the standard of care), and left to as compassionate a death as possible.

Gawande also tells the story of Warren Warwick, who specializes in another killer: cystic fibrosis. Warwick’s Minnesota clinic has for decades had better patient survival rates than all the other CF clinics around the country. The reason is because Warwick has moved beyond the “standard of care” for CF and has not been afraid to innovate in treating his patients.

In medicine, we have learned to appreciate the danger of ad hoc experimentation
on patients––of cowboy physicians. We endeavor to stick to established findings.
[BRD notes: Established findings, a/k/a “evidence-based medicine,” has become a
big buzz-word on the health care scene. Dr. H loved to use it as the rationale
for why he would or would not do something. It’s what gave me the feeling that
he was a good inside-the-box thinker, but would not be very innovative or
aggressive on my behalf if the chips were down.] But… Warwick has been able to
innovate successfully. And he has become almost contemptuous of established
findings. National clinical guidelines for care are, he says “a record of the
past, and little more––they should have an expiration date.” (p. 225)

In my opinion (and I am not alone), the national clinical guidelines for the care of metastatic breast cancer patients have outlived their rightful expiration date. They reflect only what was true yesterday, and should not be allowed to define tomorrow. We need an innovator who is contemptuous of the conventional wisdom about women with metastatic disease being incurable.

Gawande advises his medical colleagues:

The choices a doctor makes are necessarily imperfect but they alter people’s
lives. [BRD notes: True, that!] Because of that reality, it often seems safest
to do what everyone else is doing––to be just another white-coated cog in the
machine. But a doctor must not let that happen––nor should anyone who takes on
risk and responsibility in society. So find something new to try, something to
change (p. 257).

To which I can only say, to breast cancer oncologists, “Amen.”

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Why do I care about this? Why do I keep reading and writing about metastatic breast cancer? Because if this cancer comes back on me, I’ll be metastatic, and I want more than the current “standard of care” if that happens. Because even if it doesn’t happen, I have come to know and care about a lot of women who are metastatic, and I don’t want them to die.

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I have spent a lot of time in the last several weeks thinking about what I just did to myself. Thinking about my pre-cancer avowal that I would never cut, burn and poison myself, and how quickly that avowal collapsed when I realized I had an aggressive, late-stage cancer. Did I fold like a cheap tent? Sometimes it feels like it.

This introspection has probably been spurred on by a couple of women who have posted to the IBC listserv in the last couple of months, asking about relying exclusively on alternative treatments for IBC. I found myself speaking up quickly and firmly to say that I totally understood where they were coming from and totally appreciated their desire to avoid the barbarities of modern cancer treatment. I also explained just how serious IBC is, that more natural treatments work too slowly and gently in the face of aggressive cancers, and that de-bulking such tumors through heavy-handed conventional treatments can be necessary to save one’s life. I heartily endorsed using carefully selected alternative treatments as complements to conventional therapy, but not as replacements for it. I ended by saying that I would respect and honor whatever route they chose to take, because I truly do understand the desire not to do these things to oneself.

In the end, I think that both women went forward with conventional care. But speaking up in this way has provoked a crisis of conscience for me. Do I really believe this? Who is this person, speaking up so strongly, telling other women that they need to allow themselves to be poisoned, mutilated and burned if they want to have a chance at life? Do they just have to do it because I did it, because it will make me feel vindicated in my choices? Is this really me? Who have I become? And what do I really believe? Am I a traitor to the cause of thinking outside the box––to the cause of alternative health? Am I a traitor to myself?

What will I do the next time (shudder!), if there is to be a next time? Given the current “standard of care” for women with metastatic disease, maybe I should just eschew conventional treatment, if this comes back, and go all-natural? Am I brave enough, committed enough, convinced enough to do that? What if I’m wrong? What if all-natural won’t really work? But I already know that conventional treatments usually don’t work in metastatic settings, so…what would I have to lose by going all-natural instead?

My therapist continues to tell me that another way to think of my behavior last year is to think of myself as flexible in the face of novel circumstances, rather than rigidly adhering to a self-imposed dogma no matter what. My nutritionist, whom I consulted again on this question, assured me that using what he calls the “blunt tools” of conventional treatment is sometimes necessary to get the upper hand on an aggressive cancer.

He also told me that if I get a recurrence, there were many things we could do, nutritionally, to help keep the cancer quiet. I said, “You mean still there but just not very active?” He said yes. I said, “Not for me, you don’t! I want to kick cancer butt again if I get a recurrence! I don’t want to keep it quiet! I want to get rid of it!” Unlike Dr. C, he was not threatened and didn’t suggest that I’d be happier with another nutritionist. He just laughed and said, “OK. For *you* we’ll try to cure it!” (I realize he’s just humoring me…that we probably wouldn’t do anything different one way or the other. But it felt good to have him acknowledge me in that way!)

The upshot of all of this is that I’ve developed an interest in talking directly to people who have treated their cancer completely and exclusively with alternative methods. I want to get more first-hand information about these approaches. I want to see them at work long-term in the lives of people that I can talk to about what happened…not just read the (too often poorly documented) Internet claims of practitioners and a dozen success stories from poorly identified adherents.

I’d love to compile an on-line database about alternative cancer treatments. This would require serious funding, to do correctly, but it could tell us a great deal, socio-culturally, about those who refuse conventional treatments and rely exclusively on alternative methods. It might also tell us a great deal, scientifically, about which alternative methods really do have some efficacy and which are just so much froth and foam.

The database would be populated with information from individuals who have used alternative cancer treatments to address their illness. Only the patient her-/himself could contribute information. Doctors and other practitioners who have “success stories” could submit their patients’ data for inclusion, but without direct corroborating input from that patient, the data would not be used. (In other words, this is not a database about practitioner claims; it’s about patient results, from the mouths of the patients themselves.)

Here’s what would be in the database:

• Type of cancer
• Stage of cancer at diagnosis
• Date of diagnosis
• Tests done to verify diagnosis/staging (lab work, imaging, etc.)
*Whether surgery, chemo or radiation were used, and if so, how often
• Which alternative treatments were used and how often
• Date alternative treatments began to be used
• Is patient still adhering to the full alternative treatment protocol? Partial alternative treatment protocol? Not at all?
• Current cancer status (NED, stable but not NED, progression since diagnosis,
etc.)
• Tests used to verify current disease status

People participating in the database would have to promise to check in every six months to update their status. The questions all of this would be intended to answer are:

• Can alternative treatments alone bring cancer into complete remission (NED;
cure)?
• Which alternative treatments are most effective?
• How durable is this remission?

Finding people who have relied exclusively on alternative treatments is hard to do. So far I have found only three people. Two of them are a woman and her sister, who have used the Gerson method with a lot of success. However, it is apparent from reading the woman’s description of the treatment program that following it takes almost every waking moment, the diet is extremely restrictive, and it is very expensive. I’m not sure where “having a life” or “holding down a job” fits in there…but she is alive.

The third person was a woman named Kim Tinkham, who achieved her 15 minutes of fame in 2007 when she decided to follow the dictates of the popular book, The Secret, and manifest a cure for her Stage III breast cancer. She became famous because she wrote to Oprah to tell her that she had made this decision to “cure herself” (her words) in the wake of the talk show host’s promotion of the ideas in the book. Oprah was more than a little alarmed at this. Still, Tinkham relied on positive visualization, diet, alkalinizing her body by taking sodium bicarbonate, and taking nutritional supplements (among other things). Yet she died of metastatic (Stage IV) breast cancer on December 7, 2010. (For more of the story, see http://www.sciencebasedmedicine.org/?p=8745#more-8745.)

My nutritionist tells me that he has seen three other women with Stage III breast cancer follow the same path that Tinkham took…with the same results. Sometimes, he repeated, you have to de-bulk the tumor through conventional treatment because it is so aggressive that it will swamp more holistic treatment methods.

Most of the people I hear about who have an interest in alternative treatments for cancer are people who also use some conventional treatments, to one extent or another. One of my close friends told me, right after I was diagnosed, that the son of a nurse friend of hers had successfully used diet to cure his cancer. When I made further inquiries of the nurse friend, I learned that her son had also used conventional treatments. He did not rely exclusively on alternatives.

My quest to locate and talk to the “pure cases”––people who have achieved a long-term, durable cure of their cancer using strictly alternative methods––continues.

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The surgeon who wrote the commentary on Kim Tinkham’s situation (in the link above) makes a telling point about the purveyors of alternative cancer treatments. He writes, “In their arrogance of ignorance, they exude the confidence that patients like Kim Tinkham seem to need and flock to answers that are simple, neat, and completely wrong.”

I am not at the point where I am prepared to discount everything the practitioners of alternative treatments say. But as far as I can tell, most of them tend to take the same approach:

(1) They tend to treat all cancers as if they were one, single, monolithic
thing, rather than a collection of disorders that share certain similarities but
have a range of distinctive features.

(2) Having conceptualized cancer as a monolithic beast, they then tend to represent themselves as having “the” similarly monolithic answer to what it takes to cure it.

(3) They tend to represent their method-of-choice not in the more modest terms of science, with a frank discussion of percentages of successes versus failures. Instead,
they represent it as uniformly successful. Uniformly capable of cure. “The” answer.

(4) Unless, of course, it’s not. If the patient’s condition worsens or if he or she dies, it is always the case that it’s because the patient either didn’t comply with the treatment protocol or else they came in too late, when the cancer was too advanced. In other words, patient death is never framed as a failure of the cure, but as a failure of the patient. It must be so, because the cure is always framed as the panacea for all cancers; by definition, then, it can have no limitations. If the cure is truly a cure, the
reason for progression and death must lie elsewhere.

“Answers that are simple, neat and completely wrong.”

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(12-3-2010) Today is the one-year anniversary of my mastectomy. I’ve known this day was coming. It has not snuck up on me. When I got up this morning, it was no big deal. It was just a year marker.

But suddenly, as I was sitting at my desk at work, it became a big deal. That was at about 10:30 or 11:00 this morning––at about the time a year ago when the event was actually happening. At about that time, last year, I was asking for a miniscule amount of Versed just to take the edge off, and I wound up receiving 9 mg of Versed and being knocked completely unconscious for the next three hours. At about that time, last year, I willingly gave myself up to be mutilated in the hope that it would save my life.

I’ve been in mourning most of the day.

Oddly enough, it’s not the loss of my breast that bothers me. It’s the loss of my underarm lymph nodes and the resulting arm issues that I now have. I had to let them give me another health condition to cope with, because they swore to me that doing so would give me the best chance to live for as long as possible without cancer. I had to allow this violence to be done to my body.

And it is not OK. It is not OK, at all, that I had to allow this. I really, really regret it. But I don’t know how I could have chosen anything else. I had to choose between two evils. So I chose.

I’ve not only been in mourning all day. I’ve been telling myself all day that I shouldn’t feel like this. That I should be glad that a year ago today I got rid of the bulk of the cancer cells that were in my body. That a year ago today I gave the cancer the second of the one-two punch (chemo and surgery) designed to defeat it. (Radiation was a mop-up action.)

But in the end, the cancer was in my breast. I could easily enough celebrate getting rid of my breast. I cannot celebrate getting rid of my lymph nodes, because the cancer was not in my lymph nodes. Certainly not in my Level 3 lymph nodes. How can I celebrate getting rid of those? For what reason did I allow that to be done to myself? I had to allow some mutilation, and they took advantage of the situation to do maximum mutilation. Three levels, not just one or two. It makes me want to scream.

They told me, before surgery, that I might not get lymphedema at all, but I think they were being (shall we say?) disingenuous about it. I think they were trying to get me to comply with what they wanted to do. So they led me to believe certain partial truths about it, without sharing the whole, naked, unvarnished truth with me.

Yes, only 30% of all women who have axillary dissection get lymphedema. That’s what they told me. That’s what most of the literature says. (Though I have recently heard that it’s more like 42%-47%.)

But I suspect that figure is deceptive. I think it lumps together the large, large numbers of women who have only Level 1 nodes removed, along with the smaller number of women who have Level 2s removed, and those relatively few of us who have all three levels removed. I’ll bet that if you separated out that “30%” into those who underwent different levels of dissection, you’d see a much different picture.

I’ll bet that the incidence of lymphedema for women with three levels of dissection––women who have been stripped of all of their axillary nodes––is very, very high. And I’ll bet that high figure gets seriously diluted by the sheer numbers of other women who do not have such extensive surgery and thus don’t have as high an incidence of lymphedema.

The doctors don’t do this for you before you consent to the surgery, though. They just give you the aggregate statistics. The 30% number. Because it’s a more hopeful number. It may not be realistic for you. But it is hopeful.

So the doctors tell us with straight faces and perfectly honestly that only 30% of all women who have axillary dissection get lymphedema––while in their hearts they know that they are probably going to give it to us when they take all three levels of nodes. They do not warn us ahead of time that this is likely to happen. Instead, they minimize the likelihood of its happening by citing the 30% figure.

I know I should be happier, today. But I’m just not. I know I should be grateful for what I gained in terms of the effort to defeat the cancer, instead of mournful for what I lost in terms of my day-to-day functionality. But I’m just not. Instead, I’m sad and angry.

Bad me.

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A couple of weeks ago I read an article about “Toxicity from Radiation in Breast Cancer” by Julia White and Michael C. Joiner (Cancer Treat Res. 2006;128:65-109). It says that the risk of developing lymphedema is greatest – more than 1/3 – if you have supraclavicular (above the collarbone) or axillary radiation and when you have had the pectoralis muscle split. I had radiation to the nodes above the collarbone and Dr. N did split my pec minor.

Back when I was still contemplating surgery, I got a second opinion at the other major hospital in this area. This second surgeon said, almost as an aside, that she wouldn’t split the pec minor because doing so can cause problems for women, later on down the line. She said she could still get to all of the nodes she needed to reach, but it would take her 10-15 more minutes. At the time, I didn’t appreciate why that was significant. NOW I’m just figuring it out.

If I had realized what that offhand comment of hers signified, I would have been more insistent that Dr. N not cut mine. Now it’s too late. It’s cut. I’ve developed lymphedema, and my arm often has this dull, throbbing ache as the lymphatic fluid impinges on the nerves.

This sucks. You don’t know enough going into a situation to make the best choices for yourself. You rely on your doctors to make them for you, because theoretically they are more fully informed. You just tell them what is important to you, and they supposedly adjust their treatment of you accordingly.

But you read up later, when you have more time and have been able to find other resources to consult, and you find that they did not do what you would consider to have been the “best thing.” And while they take home a paycheck from it, you take home and live with the consequences of what they did. Somehow, this is all supposed to be OK.

Dr. N knew I didn’t want to get lymphedema, and she cut my pec minor muscle anyway. I didn’t know the full significance of cutting it, as regards lymphedema risk. Surely she did? Surely I’m not just now discovering something that she hasn’t known already for some time?

The kicker is, it’s not like cutting the pec minor had anything to do with the efficacy of my cancer treatment. I was not going to have a better chance of living longer if I had it cut. Cutting it gave me no survival advantage whatsoever. It was just a matter of convenience for her.

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Doctors tell you very little about lymphedema, when they are proposing to give it to you. Not only do they not fully level with you about your chances of acquiring it, given the proposed level of surgery (in my opinion), they also do not tell you that it hurts.

Lymphedema is not just about fluid retention, tissue changes, and trying to avoid infections. It is also about a dull, aching hurt that can be hard to bring under control. I have had that hurting in my arm off and on for weeks.

I’m currently going to physical therapy twice a week to try to strengthen certain muscles, on the theory (of the doctor) that the cause of the aching is weak muscle groups and consequent inappropriate arm movement that leads to pain. It has nothing really to do with lymphedema, which doesn’t hurt. My theory is that the pain reflects low levels of lymphatic fluid build-up in the arm that impinges on nerves there, causing the dull, gently throbbing ache.

A couple of days ago an article appeared in my inbox that seems to corroborate my theory. It cites research by doctors at the Mayo Clinic showing that lymphedema really does involve pain. It’s not just a cosmetic thing. It’s not just an inconvenience. And the pain is not muscular in nature.

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I knew they were going to do this to me. I knew it. I knew this was going to happen––that I would be permanently impaired by the treatments my doctors proposed. But they told me that if I didn’t let them do those treatments, and if I didn’t let them be as radical in doing so as they felt necessary, I would be more likely to die.

The way I see it, this is what having to trust your doctors gets you. I hate this. I hate being so vulnerable. So at-risk. And there seems to be no way out of it, now that I’m a resident of Cancer Land. I had to trust Dr. N to do right by me, as Gawande puts it, and the anesthesiologist, too.

I am obviously still struggling with my feelings about whether they did do right by me, or not. Or, perhaps more accurately stated, to what extent they did right by me. And how to feel OK with that.

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(12-12-2010) I was recently foolish enough to get into a lengthy discussion with a friend about the proposed health care reforms. This friend is a right-wing Republican, through and through. If it favors the very biggest businesses and gives hefty tax breaks to mega-millionaires, he’s in favor of it because he believes that what is good for the mega-millionaires trickles down to benefit working-class schmucks like him and me.

The mega-millionaires and their corporate empires, as he seems to see it, are the entrepreneurs that fuel our economy. They give us the innovations and the jobs that come with them. Big is good. Big corporations. Big banks. Wall Street. Even big government is fine if the bigness provides protections and support for the financial “bigs” (not so fine––in fact, plain ol’ socialist/communist––if it tries to provide protections and support for the little people). He is, in short, a supporter of big, money-making institutions. They are the American Way of Life, as he sees it. The fruits of free market capitalism at work.

Except when it comes to the medical industry, big pharma and their support organizations like the American Cancer Society. Like so many others (including H. Ross Perot), he believes that the ACS and big pharmaceutical companies conspire to keep knowledge of cheap, effective alternative cancer treatments suppressed, because there is no money to be made in them. Although this would certainly qualify as one of the fruits of free market capitalism––the ability to be so big and powerful that you can quash your competitors in the marketplace––my friend does not think that this is acceptable.

More that this, my friend thinks that information about how to prevent cancer through lifestyle changes is also suppressed by the ACS, big pharma and the medical industry. He sees far too little emphasis on things that he feels are extremely important in preventing cancer: eating whole foods, not smoking, making sure that you maintain an appropriately acid-alkaline balance in your body, having a low-fat diet, avoiding obesity, and avoiding pollution. In fact, he said at one point last week (but later retracted), cancer didn’t exist until 100 years ago, when pollution became an increasing problem in the wake of the Industrial Revolution. (The same Industrial Revolution, I thought, that eventually gave us the big corporations and the jobs that my friend so avidly supports as pillars of the American economic-political system.)

It all shapes up, for him and for many people like him, to look like a vast economic conspiracy. A deliberate dearth of information about prevention leads to people living unhealthy lifestyles. They cause their own cancers due to the unhealthy ways they live. The Medical Establishment cashes in on this by using its economic clout to suppress information about and research into cheaper, natural remedies and offering instead only highly toxic, expensive remedies that cannot really cure the disease. This means consigning people to die of cancer so that the big-money Medical Establishment can continue to prosper.

Note, in the above, how cancer gets framed. It’s not that unhealthy life choices increase a person’s risk of getting cancer. It’s that unhealthy life choices *cause* a person to get cancer.

It all gets back to the need some people have to address the big “why” of cancer with answers that are simple and neat. Such answers give some reassurance that if you behave differently than the unfortunate souls who get cancer––if you live “right”––the scourge of the disease will never be visited upon you. You are in control. Or if you do get it, you can cure it with a cheap, simple “fix.” Again, you are in control...whether we’re talking about getting it or about curing it. Shit doesn’t just happen, sometimes. You cause your own shit to happen, or not to happen. It’s your choice.

In our exchange, this last week, my friend was the soul of consideration and tact, up to a certain point. I am a cancer survivor, after all, and he didn’t want to offend me or be insensitive. But frankly, we were both getting exasperated with one another, as our dialog unfolded. Finally he asked me point blank: “Do you think that you did anything to cause your cancer?”

Yes and no, I said. I did do things that increased my risk of getting cancer. I have admitted that from the beginning. To be fair, I said, I also did things that should have decreased my risk of getting cancer. When it all came out in the wash, though, I got cancer anyway.

I don’t believe that I caused it, I said. If my lifestyle choices did cause it, then you have to explain why it is that other people who have lived pretty much just like I did do not get cancer.

Am I to some extent responsible for what happened because I increased my risk? Yes. Am I, in the end, thoroughly to blame for having cancer? Did I cause it? No. There are a variety of things that go into creating a cancer. A variety of things have to go wrong all at the same time at the cellular and molecular levels. Some of them may have been under my control. I doubt that others were. Sometimes, shit just happens.

In the course of our exchange this week, he sent me some information about sure-fire cancer cures that I might want to try. I looked them over and asked him for more solid information about these treatment methods, preferably in a format that was not larded with screed against the Medical Establishment (since that pushes my PTSD buttons) or fawning praise for the medical mavericks who promote any given treatment. To show him the kind of information I really appreciate getting, I sent him a copy of a medical journal article about a nutritional supplement I’ve been taking. It presents the information for and against the usefulness of the supplement, complete with footnotes to other work that I might find of interest.

He wrote back to say that he has volumes of information that might be useful to me, which he has collected over the years. But there’s no point in sending it along, he said, because I’m so enmeshed in my negativity that I just reject whatever he sends. Even though I am unwilling to do things to cure myself, he said, he was glad to see that I am at least willing to accept my own responsibility for causing my cancer.

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My older son just called. He was in Raleigh at about the time that Elizabeth Edwards’ funeral was taking place yesterday, and he saw the nut-jobs from Kansas who came out to protest. They carried signs saying “Thank God for breast cancer!” and saying that Edwards was in hell, now, because she supported gay rights. The two kids of the nut-jobs were kicking the American flag along the ground.

My son wanted to know why people who claim to be religious would say such things and behave like that. He wanted to know why they were saying “Thank God for breast cancer.”

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My hair, which had come in reasonably well the further out I got from chemo, appears to be having second thoughts!

Although it was much finer and thinner than it used to be, it was hair and it was covering my head. But now it appears to be getting thinner and thinner, especially toward the top and front. And it’s breaking off. Looking rather sorry, I must say. I’m afraid I’m heading for male pattern baldness––or even complete baldness!

I’m not sure what’s causing this, but I suspect it may have to do with the Femara reducing my estrogen levels to incredible lows. We’ll see what my onc doc says when I see her right before Christmas.

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Further down, inside my head, there is sometimes a similar lack of activity as at the surface, follicular level. Little neurons fail to fire, sometimes with amusing results.

I recently washed my compression hose (edema in my legs now, too) and a couple of my compression sleeves––two old ones and one new one. When I took them out of the washer, one of the pair of my new compression sleeves was missing. I spent many minutes looking for it. In the washer? On the floor? Slipped down into the dirty laundry hamper? But I couldn’t find it anywhere, so I finally gave up looking.

I kept thinking about it, though, wondering where the missing sleeve went. I realized, with some irritation, that if I couldn’t find the missing sleeve, I was going to have to buy another one, and they cost about $75 a pop. Argh!

After about an hour and a half of this, it dawned on me. Compression sleeves don’t come in pairs! You buy them singly, and I had only bought the single one I needed. I never HAD a second new compression sleeve! I only had one, I washed it, and it was hanging on the back of a chair, drying.

Duh. Chemo brain!

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I can laugh about chemo brain. It’s easy to make jokes about it and treat it lightly. But not always.

I have long thought that people who place all their trust in their good looks and fail to develop their intellect are making a real mistake in life. As you age, good looks will fade. Your intelligence and education will stick around longer.

Now, as chemo brain emerges, sometimes I have difficulty learning new things. Sometimes things don’t make quick and easy sense to me, like they used to, and I get very angry and frustrated….

I also get scared. I need to be able to learn new things and know and understand so that I can make intelligent decisions in the future. Especially when it comes to cancer and cancer treatments. I need to not have to work so hard, sometimes, to understand certain concepts. It scares me, to not be able to grasp things I read in medical press releases. I used to be smarter than this, didn’t I?

And then it occurs to me that if I become too intellectually dull I won’t be able to learn enough or understand enough. Which means I will have to rely on my doctors. Trust them more.

And then it occurs to me that I have spent a lifetime placing all my trust in my intellect and have failed to develop my ability to trust others quite as much. I’ve always been able to rely on my own brain-power. And this may have been a mistake in life.

I’m really not in a place that’s much different than the people who have relied on their looks to get along in life, am I? I have relied on my intellectual ability. What if it is failing me just as others’ good looks fail them?

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Gawande says, in Better, that doctors should try to become “positive deviants”––operating out of the positive tail of the normal bell curve of performance––by writing something. “By offering your reflections to an audience, even a small one,” he says, “you make yourself part of a larger world” (p. 256).

After reading all of these reflections of mine, you may be thinking, “For sure, I’m positive she’s deviant!” :) Be that as it may, thank you all for being a part of my larger world.

10-16-2010 Update – Jody, Expletives, and Arm Pain

2010-10-17T09:19:00.000-07:00

This has not been a good week. Jody, a young woman who finished her radiation treatments just two weeks after me, died on Monday. She was 33 years old.

I got to know Jody in the rads waiting room last spring. She was on Lineac 2, I was on Lineac 1, and we got our treatments at about the same time of day, so our paths crossed. Jody worked at the cancer center as a bench scientist helping unravel the mysteries of the BRCA genes that increase a woman’s risk for breast cancer. Ironically enough, when she was diagnosed with breast cancer, she discovered that she has the gene. Had the gene. (Getting used to the past tense is hard.)

After we finished our treatments, we got together for supper one evening in early summer. We had so much fun talking and sharing that we decided to do it again. Jody invited some of her other breast cancer survivor friends to join us the next time, and so did I. Thus has grown our nascent little peer support group, the Breast Cancer Sisters Local #1.

At the end of September, just six months after we had finished our treatments, Jody’s tumor markers shot up and she began developing shortness of breath. At first they thought it was pulmonary embolisms, which indicated that the cancer had returned. Cancer elsewhere in the body will often cause changes in the blood chemistry to produce embolisms. PEs can be a sign that there is cancer. And indeed it had returned. To her liver and her spine.

But her breathing just got worse and worse over the next three weeks, and she was in and out of the hospital several times. I sat with her one time so her worried student-husband would feel free to attend his classes at NC State instead of staying glued to her side. The last time she entered the hospital it was through the ER, and I visited her there on the Thursday before she died. She had graduated from a canula for oxygen to a full face oxygen mask with about a 50% concentration of oxygen being fed to her. When they couldn’t get her oxygen saturation high enough, they put her on 100% oxygen. And still it was not enough. Then they began to talk about intubating and ventilating her.

It was only then, nearly three weeks after she had first become short of breath, that they figured out she had cancer in her lungs, too. But not in the form of a lumpy tumor. It was in the form of sheets of tumor that were spreading throughout the lymphatic system of the lungs, blocking off and killing the tiny capillaries that make breathing possible. Sounds like the lung version of IBC. Like IBC, it is very rare.

She knew what was happening to her, more or less. She knew she was dying. Or did she? In one of her last posts to a message board, she described herself as “absolutely terrified” at the thought of being intubated and put on a ventilator as her lung function continued to decline. She also wrote that there was a long and scary path ahead…but it wasn’t long and scary. It was short and scary.

A physician on the message board responded to Jody’s post, expressing the hope that her doctors had given her morphine and an anti-anxiety medication, because they would help her with air hunger—that gasping inability to fill your lungs with air, and the consequent feeling that you are suffocating. I know this is the typical approach to dealing with air hunger, but I don’t find it comforting at all! I’m not sure that Jody did, either.

They intubated Jody on Monday morning and ceased treatment on Monday afternoon when her blood pressure began to fall and they couldn’t keep it up. She died at about 3:30 that day.

What would it be like to know you are voluntarily relinquishing consciousness so they can intubate you…and that you may never regain consciousness again? How do you do that?

A mutual friend assures me that Jody knew she was dying and had a couple of days to say good-bye to her family, who were gathering at the hospital. How do you lie there in a hospital bed, struggling for air, and say goodbye to your family at the age of only 33? Who, at age 33, has planned for such a thing to happen to them? Who is prepared to do something like that?

Jody lived, and died, one of my worst nightmares. And she did it far, far, too soon. I am so, so sorry that this happened to her. And I am so, so sorry that she is gone. It breaks my heart.

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On the Wednesday after Jody died, I saw that some medical journal had published an article about depression in cancer patients, and a doctor from my hospital was quoted in the article. So I checked it out. The tenor of the piece was that maybe cancer patients who receive a terminal diagnosis could be depressed and ought to be evaluated for that and then maybe medicated.

Gee, d’ya think maybe they might be depressed?!!! What ever gave you THAT idea, Einstein?!!!!

But the part that got to me was the opinion, strong throughout the article, that terminal patients who are given just a few weeks or months to live might be depressed and ought to be medicated, if necessary, to try to prevent their committing suicide. This just abso-friggin’-lutely enraged me beyond belief.

They shouldn’t have the right to take their own lives, if they choose to do so? Instead, we should let the cancer do that for them? Of course, the article suggests, we should be doing whatever we could to alleviate or at least minimize their suffering, but if we can’t alleviate it…well…. The important thing in the end is that they did not commit suicide.

This infuriated me beyond words. I mean, I believe that all cancer patients and especially terminal cancer patients should absolutely be offered psychological care, necessary drugs for depression or anxiety, aggressive treatment aiming for cure if they want this, palliative care or hospice care (a rose by any other name…).

But I also believe that in the end, if they have been handed a diagnosis and told that they have only a few weeks or months to live and they choose to take their own lives rather than let the cancer cannibalize them, this is a legitimate choice. It’s a sad one. But a legitimate one.

A friend of mine in Pennsylvania plans to do this and has the materials on hand to do so. Right now she’s living wild and free and loving life. She’s on disability and is pulling in more money now than when she was working full time. She travels all the time. And she just had her first grandchild. She’s mostly pain-free. She’s nowhere near the place where she’s in so much pain and so near death, anyway, that it’s just time to go. But when that time comes, she has assured me, she will end it her way and not let the cancer do it for her. Not let the cancer have the final word. And I totally support her in doing that, when the time comes.

The article just infuriated me. It seemed so condescending. All these talking heads, these “professionals” who have never been told that they are dying—and soon—speaking with great authority about what “ought” to happen so that no one rushes Mother Nature by taking their own life a few days or weeks before Nature can do it, herself.

I forwarded the article to Dr. D, the oncology psychiatrist whom I have seen several times over the course of the last year, since one of his colleagues at the hospital had been quoted in it, and I expressed my disagreement in strong and frank terms. I cursed floridly in the post.

Dr. D had not responded to me a couple of weeks earlier when I had asked for a prescription for Ativan to help with the shortness of breath I’d been feeling. I had assumed it was due to the rapidly deteriorating situation with Jody and the serious, mysterious health situation of another young member of the Breast Cancer Sisters Local #1. I knew that my own shortness of breath, which was not being relieved with my inhaler, was probably not reactive airways but a low-grade anxiety caused by ongoing concern for my friends. It was psychological, and I thought I needed some help in managing this anxiety since the power of positive thinking, alone, wasn’t working very well. So I decided I needed some medication.

My asking him for this drug was a kind of minor big deal, to me, because he’s offered me anti-depressants and anti-anxiety meds in the past, and I have always turned him down. But now I had finally decided to trust him by asking him, a psychiatrist, for medication, rather than my primary care provider. It was my way of saying, “I trust you enough to allow myself to become vulnerable to you, by accepting the psychoactive medications you can offer me.”

I have no problem being vulnerable like that with my PCP and accepting psychoactive drugs from her, when I feel they’re warranted. I have been very hesitant to allow myself to be vulnerable like that with him, because he’s a psychiatrist and it seems that he’s always ready to whip out his prescription pad and medicate my legitimate feelings away. I’ve held him at arm’s length, in this regard. Unwilling to allow him to do that. Accepting his help in talking through issues surrounding my care at the hospital, but refusing to allow him to dismiss the legitimacy of my issues by trying to medicate them out of me—to make me into a Stepford Patient.

But it’s not really the drugs that are at issue. It’s just that I didn’t want him to see me that way—or more appropriately put, to interact with me in that way. I wanted him to interact with me as a person, not as a diagnosis that he could write a prescription for. So before this, I had always refused to allow our relationship to be based on that. I had insisted it be based on dialog, not drugs.

In almost two weeks time, though, he didn’t respond to my request. I figured he was out of town again and not checking email. He travels a lot. He can be hard to reach. I wasn’t too concerned. But when Jody died on Monday afternoon, I knew I needed help and couldn’t wait any longer. So I called my PCP on Tuesday morning and within a couple of hours I had my Ativan.

Then on Wednesday I read that jack-ass article and forwarded a copy to him, complete with my expletive-filled commentary. Within minutes he had emailed me back, asking me to call him and if I didn’t reach him, to leave a number where he could call me. So I did. I emailed him and I left a voice mail for him. I reassured him that I was not, myself, suicidal. That all of my anger was directed outward, so not to worry.

He called me a few hours later. I said, again, that I was not suicidal, so he has nothing to worry about. He said he wasn’t concerned about that, but he had noticed that my request for Ativan hadn’t been answered. It had kind of fallen through the cracks and he was sorry about that and would I like something now? I told him that my PCP had already written me a script for it and that his doing so was now unnecessary, but thanks anyway.

Then he said that he was mainly calling because he was concerned about the email he had received from me. He noticed that it had some strong language in it, and he noted that I have always had strong emotions and he wondered if he might have missed a diagnosis. Could I be manic?

I couldn’t believe my ears. He was worried that he had missed a diagnosis. That’s why he was calling me. And what’s worse, his first reaction was “diagnosis” (maybe she’s manic) not “human being in distress” (maybe she’s really upset).

I reassured him that no, I can cuss like a sailor. But I work as a writer (I’m not sure I said that, but I was thinking it) and I know a little bit about how to communicate. There are times when you can let it fly, and times when you’re better served to speak more conservatively. (Sometimes, I thought, with friends and when you feel secure with someone, you just let it fly. Apparently I was wrong to feel so comfortable with him.)

Jody had just died, I said, and she was only 33, and there is another friend who might have congestive heart failure because of breast cancer treatments and she’s only 40. And then there were all these jack-ass talking heads in that article talking about how cancer patients (especially terminal ones) should feel and should behave—and it just set me off.

I gave a micro-mini-rant about jack-ass talking head professionals who are safely spared a terminal diagnosis, themselves, but have all these grand ideas about how those who *are* given such diagnoses “ought” to feel and “ought” to act no matter how grim their prospects—and are willing to medicate them to get them to feel and act that way.

He said he was sorry about Jody. And he said he thought I’d made some good points in my email about end-of-life situations. I reassured him again that I was not manic…just depressed and angry and tired of talking-head bullshit. And the conversation ended.

It left me feeling angrier and sadder, though. He seemed to be more concerned about himself and whether he had missed a diagnosis than he was about me, a human being, and my grief and upset. Once he determined that he had not missed a diagnosis, it was like there wasn’t a lot more to say.

He didn’t miss a diagnosis. But he seems to have missed a human being.

In asking him for the prescription for Ativan, I felt I was inviting him to interfere in my life in a more personal way than I’d ever allowed before. I was saying that I trusted him not to lose sight of me as a person just because he was providing me with access to a drug.

But when it came down to it, he doesn’t see me—at least not primarily—as a person, but as a diagnosis that he either got right or missed. And he was relieved to think that he had not missed it. He saw me not as a person with a set of emotions that were understandably strong and might need processing, but as a person with a set of emotions that were pathologically strong and might need medicating.

Medication first. Humanity later. The exact reaction to me that I had trusted him NOT to have, at this point in our relationship.

Since that conversation, I’ve been trying to talk myself out of these feelings. I tell myself that maybe he feels badly that he didn’t catch my medical PTSD early on. In our first discussions he had asked me whether I had any abuse in my background. (Nope.) But it had never occurred to him back then that my very strong reactions to my cancer diagnosis and, especially, to my cancer treatments might have been fueled by a different kind of trauma. That what he was seeing might be old, unprocessed medical trauma. I don’t blame him for missing that. None of us caught it, really, for quite a while. The magnitude and significance of the medical trauma was a revelation that came only slowly and with time.

Maybe now, I keep telling myself, he feels bad about having missed the PTSD and maybe having missed opportunities to help with it more effectively. Flash forward to this last week or so, when he forgot about my request for Ativan for several days. Perhaps he was reminded of my request only when he saw my message about the jack-ass article, and my cursing (a new phenomenon, to him) made him think with some guilt about forgetting my request for medication. And then he thought back to the missed PTSD diagnosis, and wondered if he’d let another diagnosis slip through the cracks. And he called because he wanted to make sure he wasn’t repeatedly missing beats with me.

I tell myself that in asking about whether he might have missed a diagnosis, he was expressing his care and concern for me in the way he was trained to do. That this *was* him expressing care and concern about me, as a person. As a human being in distress. Not just as a diagnosis. And he had a way that he might be able to alleviate that distress (drugs, which require a diagnosis first), and he wanted to offer it to me, if it seemed that I needed it.

But then I tell myself that he could have ascertained whether I was manic by talking to me for a bit. He knows me well enough by now, I would think, that a bit of conversation would have revealed to him whether I was in a manic state or not. And in talking to me, he would have been showing care for me, not just for my diagnosis—finding out what is going on in my life, how I’m feeling. Instead, the way he went about it, it seemed like he was more concerned about himself and how he had done his job, than about me and how I was suffering and grieving.

Then I tell myself that yes, he could have talked more and not been as blunt about his concerns about my mental health. But we’ve developed a fairly frank relationship, over time (though clearly not one that has yet included my cussing as a normal behavior). So really, maybe he was treating me with some consideration in not pussy-footing around with me, as he might have with someone else, but instead just getting right to the point. Asking the question: Are you manic?

And besides, I tell myself, this was a phone call on the fly. I was in the car on the way to my exercise class. He was probably in between appointments of one sort or another. With me, the fact that he felt he could just cut to the chase and ask the question point blank is probably a sign of the respect he has for my intelligence and my self-awareness.

All of these “yes, buts” may be true. They probably are true.

But I just know that in the end, when the conversation was over, I felt that the big concern was whether he’d missed a diagnosis, not how much I was grieving and suffering. The contact he established when I sent him that article was not him rushing to offer his human support of another human being in obvious pain, but him rushing to offer his professional support via a prescription pad which, if it was not needed, left him with little else to offer. And that hurt.

I had thought I could trust him not to see me like that. That’s why I had asked him for the Ativan prescription. I had felt sure that in accepting this kind of help from him, at this point in our relationship, I would not be obscuring his ability to see me first rather than a diagnosis first. But I was wrong.

Sometimes, doctors and nurses, you may have professional acumen to offer a patient, but you shouldn’t always necessarily lead with that. Because when it gets right down to it, it’s often not the most important thing you have to offer.

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That’s been the story throughout this cancer journey. A feeling that most of my care providers are failing to connect with me as a person. Instead, they’re just trying to manage me as a patient with a given diagnosis.

I’ve been considering why it is that establishing a personal connection with my doctors and nurses has been so damned important to me. (There. I’ve cursed again. Maybe if I do this more often, in contexts where I don’t normally curse, psychiatrists will not be shocked and rush to judgment about my mental health status when I do it.)

I think I hunger for this personal connection—for the feeling that they are connecting with me as me, fully understanding and appreciating me, and not just connecting with me as an illness needing treatment—because this kind of connection is the only thing that has enough power to break down the walls of fear and mistrust. It’s the one sure way that I can begin to let go of my PTSD-generated anger and fear and mistrust, and move forward into treatment with a healthier frame of mind.

Yet I have seldom been able to find this. Most care providers cannot or will not cry with a patient, as Sunny the medical student cried with me that time. When it comes to that level of personal connection, most care providers cannot or will not do that.

From my point of view, though, her crying with me was one of the single most caring things that happened to me throughout my cancer treatments. The result? It made me think that if I had to voluntarily submit to intubation, I would let her do it. Because I knew, then, that she cared about me. And that’s who I want working on me. Someone who cares about me that deeply. Someone for whom I’m more than a diagnosis that can be treated with a prescription pad.

Maybe I’m just asking for too much? Maybe I should be satisfied to be a diagnosis and a prescription to all of them? Maybe I should be content to keep them at arm’s length forever, in return? To not let them get too near to me, to not trust them too much, and just use them to get whatever I need, without ever really seeking to engage with them as human beings, in return?

No matter how scared I am at the health situation I’m facing. No matter how much I need that human connection to feel safe or to feel confident about my treatment. Instead, just be content to keep them forever at arm’s length. Eyed warily. Approached cautiously. Not ever completely trusted.

This is the patient’s equivalent of the professional distancing that allows them to see me primarily as a diagnosis and a prescription. It isn’t a very satisfactory way of being a patient or (I would assume) of giving health care. But maybe it’s the only way that works?

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I am so tired. I am tired of my life being so intimately intertwined with cancer. I am tired of cancer, and I’m tired of myself and the intensity of my emotions in dealing with cancer. I’m tired of being reminded when my hips hurt because of what Femara does to me and when I can’t sleep comfortably on my right side any more because there is no more muscle or fat on that side of my chest to cushion me and when my arm aches because I’ve got lymphedema—I’m tired of all these things reminding me, in their quiet or insistent way every day, that I have had cancer. That I must be careful. I am tired of feeling like I need to stay on top of the latest breast cancer news and especially IBC news, so that if I need to, I will be a better-informed health care consumer in the future. I am tired of knowing so many people, all of a sudden, who have or have had cancer and seeing them get sick or seeing them die. I’m tired of this nightmare world that has become so normal, so customary to me. I just want to walk away from all of it.

But what if cancer doesn’t walk away from me?

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My arm hurts much of the time now. A dull, throbbing ache. I can wake up with it hurting. Wearing the sleeve may make the hurting less, but it may not. I wear my sleeve and do my manual lymph drainage, but the ache remains. I haven’t been doing any work to speak of outside, because my arm aches and I don’t want to make it worse.

This morning, after working at the computer for a few hours without my sleeve, I realized that the fingers on my lymphedema arm were considerably colder than the fingers on my other arm. I didn’t think lymphedema could do that, so I called Val, my lymph nymph, to double check. I was right. That’s not caused by lymphedema.

Then I called the triage nurse to see what she would say. Duh. Do they ever say anything other than, “You should probably go to the ER”? It could be some kind of blood clot in my arm, cutting off circulation and making my fingers cold and my arm ache. But maybe it’s not?

I decided to do some manual lymph drainage, put on my sleeve, and move around a bit to get my circulation moving. So far, so good…. The pain and swelling are still there, but my fingers have warmed up.

Now what do I do to make this constant aching go away?

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Oh, and guess what I found out on Friday? After Jody’s memorial service, a couple of us went out to eat, including one of the Breast Cancer Sisters Local #1 members. This woman was diagnosed at the breast clinic at the hospital two weeks after I was last year.

Remember how I was not allowed to choose my own oncologist? Remember how I was assigned to Dr. H (the new guy on the block, there, at the time) and when I said that I had hoped to consult with Dr. C or Dr. A I was told I couldn’t, because they weren’t taking new patients? I was forbidden to choose my own health care team. Remember that?

Well, when this breast cancer sister was diagnosed two weeks after I was, she was assigned to Dr. C.

Yes, it’s possible that Dr. C had started taking new patients by that time. I suspect, however, that what really happened is this: Dr. H’s case load had finally gotten filled, so the other doctors once again began taking new patients.

10-10-10 Update – Lymphedema Strikes; The “Gifts” of Femara; The Culture of Cancer

2010-10-10T19:49:00.000-07:00

Well, the thing I fought like crazy to avoid has happened. I now have lymphedema in my right arm. In the end, it’s my own stupid fault––that is, if you overlook the little detail that if modern cancer treatment wasn’t what it is, I wouldn’t have been at risk for lymphedema in the first place. However, given modern cancer treatment and what it does to the human body as an unproblematic fact, then you can only say that it’s my own stupid fault. I took unnecessary chances because I was taking for granted how well I seemed to be doing.

Two weekends ago I needed to do some weed-eating. The grass in certain areas was knee-high and needed to be taken down, and I was feeling good, so I thought I could do it. I got out my weed eater, but I had to spend a few minutes adjusting the strap where it hangs over my left (good arm) shoulder. Someone else had used it the last time, and the strap had been shortened for them. After several tries, which involved taking the weed eater off and then putting it back on again, I got the strap adjusted just right, so that the weed eater hung at about the right level.

At that point I should have taken it off again, laid it down on the ground, and pulled the starter cord. But no. I got lazy. I thought that I could just pull the weed eater around to the front at the same time that I twisted my body to the right to reach the cord. Giving it a yank or two might stress my arm a tiny bit, but not too much (I thought). It took a couple of tries, and the weed eater started just fine.

So I weed eated my garden and around my house. Probably took 1½ or 2 hours to do it all. I should have done the bare minimum––the garden that was so overgrown. But I got on a roll and was feeling good, so I pushed on.

When I was finally done, I went into the house and instead of stripping off my pressure sleeve and doing some manual lymph drainage, I just took a shower and changed into clean clothes and collapsed from the exertion.

About 30 hours later, when I was finishing up some work at the computer the next day, I looked down and noticed that my right forearm was a lot bigger than my left forearm. It had a big bulge, a big lump, in an area where the same contour of my left forearm was flatter and smoother. I felt this bulge on my right arm, and it felt really hard, almost like a rock, whereas the skin on my left arm in the same area was soft and pliable––old lady skin. I immediately began doing manual lymph massage, but I knew right away what this was and why it had happened. I began kicking myself.

The next day (Monday) I contacted my lymph nymph, Val, and she confirmed that these are the signs of lymphedema. I saw Val at an exercise class two days later and she quickly measured my arm. Yup. Swollen. And she saw pitting on the right arm––when she pressed her thumb into the swollen tissue, she left a thumb-print because she was momentarily pushing the fluid in my skin out of the way.

The next week I already had an appointment to see Val in her office for a professional massage, and she did a formal assessment then. No doubt about it. I am now, officially, Stage 1 with lymphedema. I will never go back to being Stage 0 again.

With work, we think we can get it under control again and bring my arm back down to a normal size. But from now on I really have to be very, very careful what I do. I have to be careful to manual lymph massage twice a day (I’d gotten careless). I have to be more careful about not stressing that arm. I had been weaning myself off of daily use of the pressure sleeve, but now I’m back to daily. And instead of wearing the light-weight, circular-knit, over-the-counter pressure sleeve, I’m wearing the heavy, hard-to-put-on, flat-knit, custom-made pressure sleeve I bought early this year when I was burning off flexible health care spending account money. The weave is much coarser and it’s not as comfortable to wear. But…. I’ve been spending more time on the couch with my arm elevated…though I don’t know if that really helps.

I do know that lymphedema hurts. It’s like a dull, mildly throbbing back-ache in your arm. Since I’m right-handed, the hurting does affect my life. The constant aching makes you want to do nothing that uses that arm. For me, that means not doing the two things I typically spend most of my time doing: working at the computer and reading.

Yes, reading. I almost always read non-fiction, and I always underline and highlight as I’m reading. I do those things with my right hand, because I’m right-handed. So lymphedema affects my ability to entertain myself by reading, not to mention my livelihood, which involves huge amounts of computer work.

I’m not sure how this is going to play out in the long run. It’s discouraging. But, as I said, if you accept as an unproblematic “given” that modern breast cancer treatment puts people at risk for lymphedema, then it’s my own stupid fault. I wasn’t as careful as I should have been. I became complacent about how well I was doing. I took chances.

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Though I am discouraged and frustrated, I’ve been surprised at how calmly I’ve taken this latest development. I think in part it’s because at this point in time I know more people with cancer or who have recently been treated for cancer, and I have a larger personal context for understanding what’s happened to me. This sucks. No doubt about it. I don’t want to minimize that. But I know people who are trying to cope with situations that suck so much worse than this…. They’d trade me for my lymphedema in a (rapid) heartbeat, if they had the chance.

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I also have developed pain in my shoulders. The space between the top arm bone and the shoulder bone, where the two come together––it’s like it’s bruised in there, and any movement that uses the muscles that attach in that area causes pain. For awhile I thought it was caused by my being too strenuous in my workout in my exercise class, although this doesn’t make much sense. I’m almost 20 weeks into this class, and it’s a little late to be getting these kinds of injuries.

I’m beginning to suspect that it’s actually one of the side effects of Femara, the aromatase inhibitor (AI) I’m taking. I think this may be what arthritis in the shoulder joints feels like. It doesn’t seem the same as arthritis in the hips, which Femara is also giving me. That feels like a burning, hot, abrasive pain. This feels like an aching and bruised pain.

I don’t quite know how to handle this, with my exercise. Do I push on through it? On days when I’m hurting, do I go more gently, with fewer reps and lighter weights? I don’t know. I suppose some experimentation is in order.

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Among the arthritic joys of taking Femara I must now add another. It would seem that I’m becoming osteopenic, meaning my bones are losing calcium (despite my calcium and Vitamin D3 supplements and despite the fact that I’ve been taking bisphosphonates to try to prevent this) and I’m on my way to developing osteoporosis, with its increased risk of bone fracture. My mom’s brother has osteoporosis, so it’s in the family. If Uncle Dale’s experience is any indicator, osteoporosis hurts. The brittleness of the bones makes them subject to cracking and breaking, and these things hurt. Femara has begun taking me down that road, now, too.

I found out about this new development when I went to a special one-day event at Pinehurst, where the U.S. Open Golf Tournament is played. Ooh-la-la! Such opulence! I can’t imagine what it would be like to have that kind of money.

Anyway, the resort there has a one-day event in October for breast cancer survivors. You can get one free service at the day spa, so I went and got a massage. (One of the best I’ve ever had! Oh, Jay and his magic fingers!) They had various vendors there, too, and one of them had one of those bone density testing machines where you put your heel in and they screen you for osteoporosis. So I did it. Just to see how I’m doing.

I had normal bone density before I started Femara, but now I’m in the osteopenic range *DESPITE* all that I’ve been doing to try to prevent it. I’m hoping that the Boniva (oral bisphos) wasn’t doing the job and that my switching to Zometa (IV bisphos) will prove to make a difference. I had my first Zometa infusion just two weeks before this, so perhaps it just hadn’t had time to work its magic on my bones, yet, by the time I went to Pinehurst?

But if it doesn’t halt the progression toward osteoporosis, I don’t know what we’re going to do about this. I can hardly stop taking AIs. They are proven to significantly reduce my risk of getting cancer again. But they’re also giving me osteo.

Ever get the feeling that I’m on a slow downward spiral that I’m going to have a lot of trouble getting off of?

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This Femara that I’m taking also seems to be having another side effect. Here lately people have been commenting on how skinny I look. I’m down to between 161 and 164 lbs. When this all began, I was tipping in at 227 lbs. I’ve attributed this weight loss to my changed way of eating, and I’m sure that it *is* caused by that. (I didn’t change my diet in order to lose weight; I changed it in order to create an internal micro-environment that would be more hostile to cancer growth. Weight loss was a by-product of this effort to get rid of the cancer and keep it away.)

But I have been secretly harboring some concerns about whether I am going to be able to stop the weight loss when I get down to about 150 lbs., or whether it will continue despite me. I weigh myself every morning, and sometimes days go by when I lose weight even though in the previous days I’ve been eating things that normally make me gain a half a pound or so.

Like cashews. Usually a handful of cashews will pretty much ensure that I will gain a few ounces, maybe half a pound, when I weigh in the next morning. When I can eat a couple of handfuls of cashews and still see a 1 lb. loss the next morning, it begins to make me wonder what’s going on.

This is a fairly new development and has been making me wonder about whether I’m really in control of this weight loss or not. People suddenly all commenting on how skinny I’m looking has made me wonder even more.

Then I noticed that one of the common side effects of Femara is weight loss. OK. Well, I can live with that. At least it’s one side effect that is really nice.

----------------

So why am I taking Femara, you may ask, if it’s making my joints hurt and making me osteopenic? Because it’s a drug that helps to drain my body of estrogen, which feeds the kind of cancer I had.

I was told from Day One that I would be taking an aromatase inhibitor like Femara for five years after my active treatments were done. So in my mind Femara is not a “treatment” drug, but a “maintenance” drug––something you take to prevent the cancer from coming back. To deprive it of a welcoming, estrogen-rich internal environment.

However, it has slowly dawned on me, these last couple of weeks, that for some women who get metastatic breast cancer, anti-hormonals (i.e., aromatase inhibitors [AIs], Femara among them) are their first course of treatment for metastatic disease. They talk on the listservs about using AIs to hopefully control the progression of the disease, trying to move from one AI to another, as one fails and then another fails, all in an effort to avoid having to move on to taking chemo, which is harder on the body.

And as I have been reading these things, it has slowly dawned on me that I’m already taking my first AI. I’m not metastatic (yet) that we know of. But I’m already doing what these women are doing. If I become metastatic, one proposed course of action that my doctor(s) will suggest to me will probably be to simply switch to a different AI in order to try to contain the progression of the disease for as long as possible before I have to move on to chemo again.

It’s a kind of odd feeling, to realize that in taking Femara I have one big toe flopped over into the world of metastatic breast cancer patients, already.

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Yesterday (Friday) I got out and tried to do some work outside. I laid down a bit of mulch. Mostly I hauled firewood from a pile that was dumped in my yard, over to my firewood racks so it will be protected from the elements. I thought I was doing fine. I felt reasonably energetic enough. Good. It was a good workout. As good for cardio and for strength as anything I do at Get Real & Heel (my exercise class).

But by the time I had finished a couple of hours later, I was exhausted. It was all I could do to take a shower. And I was useless all the rest of the day and most of the next day. I have spent most of the last 48 hours sleeping and resting.

I get afraid, sometimes, that I’m not going to be able to keep my property, because I’m never again going to be able to put in the effort to maintain it. And if I lose my job because I can’t work enough hours because of the cancer or its treatment effects, what then? I love looking around and seeing how I’ve taken this sad, gray little property that no one wanted (it was on the market for 2 years) and made it more colorful, more attractive, more efficient, more self-sufficient. More loved and cared about. I’ve built this. I’ve helped it grow, as a property. I would hate to lose it.

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When I get this tired, it affects everything. It’s like I’m too tired to think.

Reading is strenuous, because it requires thinking, in order to comprehend what I’m reading. (Remember, 98% of what I read is non-fiction. I don’t, in general, enjoy fiction.) I can’t focus well enough, when I’m this tired, to be able to think like that.

Doing office-type chores at the computer or shuffling paperwork is too strenuous. It means I have to try to decide what goes where, what should be done first and what next, etc. And trying to make those kinds of decisions seems so difficult.

So I spend inordinate amounts of time lying on the couch with my lymphedema arm elevated, watching some mindless thing on TV, and falling asleep.

Yet there’s so much I need to get done!

This is just no way to live. I’m not back to my old self. My old energy. My old intellectual capacities. I really hate this. It seems like so much is riding on my being able to get back to my old self RIGHT NOW…and I just can’t make it back that quickly. It’s scary.

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I gave a talk last week at the Employee Forum about breast cancer awareness. It was good and yet difficult to be back there. My experience serving on the Forum was one of the best experiences I’ve had in my life. I was diagnosed with IBC on the day that was my last official day as a Forum delegate, last year. I was afraid that going back to that place to talk to that group of people about having IBC would make me break down into a blubbering, bawling mess.

I am happy to report that this did not occur. I did choke up a few times, but I didn’t break down and cry. It was an achievement.

I was told by several people, afterward, that my talk was very moving. The student paper did a short article on my talk (and got every fact right except for one). And the faculty/staff newspaper is going to do an interview with me on Wednesday this week so they can do a feature write-up about me as a worker at my university: “Brenda developed a reputation during her service on the Forum as a tireless advocate for staff employees. Now she’s bringing that same strength to bear in a fight for her life.”

I’ve asked the reporter not to paint me as some kind of saintly, noble person. “After all,” I wrote to him, “we both know that this was not true about me before I got cancer, and having had cancer doesn’t make it suddenly true of me now.” There are too many fluffy, pink stories this time of year in which breast cancer survivors come across as virtual paragons rather than as the real, flawed, scared, determined people facing serious challenges that they really are. We’ll see how this story turns out!

(The reporter and the faculty/staff newspaper editor should know the truth of my lack of sainthood as well as anyone: The Employee Forum Communications Committee that I chaired almost took their paper and the University in general to court over their censorship of our Forum newsletter, which we published as an insert in their newspaper once a year. They, of course, felt it was not censorship, but justifiable editorial control. We were ready to let the courts decide…. But we found an alternative solution that worked well for us.

After all of that, I was pretty impressed that they would want to have anything to do with me now, no matter how moving my breast cancer story might be. But that’s what I have found at the University. More than one person with whom I locked horns, as an outspoken delegate on the Employee Forum, has risen to my aid, defense and support since my diagnosis. It’s really pretty remarkable….)

Anyway, in my talk I gave the Forum info on what IBC is and how to recognize it. It’s the lumpless breast cancer that is not usually detectable with a mammogram. And then I gave them the statistics for IBC:

If you put me in a room with 99 other women with an IBC diagnosis and check back in five years to see how we’re doing, 50-60 of us won’t be there any more. If you check back in ten years, 75 of us won’t be there any more.

Those are my odds. But they’re so much better than they were 20 years ago. In the 1990s, at five years out, 95-100 of us wouldn’t have been left in the room. So that’s progress.

I explained that I’m doing everything I can to make sure that I’m in that 25% who are still surviving at ten years out. (I didn’t point out that “survive” doesn’t necessarily mean I’d be disease-free. Only that I’d be alive.) But then again, I mused, there is no particular reason to think that I won’t be one of the ones who doesn’t make it. We just don’t know.

I’ve had a good response to my treatments, I said, and I’m doing all these extra things, like changing how I eat, taking all these damned expensive supplements every day, trying to incorporate cardio exercise into my daily life regimen…. I’m doing everything I can (at least, everything that seems likely to give me a reasonable “bang” for the buck of time, energy and money expended), but in the end, we don’t know whether I’ll be successful or not. Only time will tell.

I wound up by giving them a “to do” list of four things: know your risk for breast cancer (though my risk was low and I still got this!), know the steps you can take to try to avoid it, be vigilant for the signs and symptoms of regular BC and IBC, and join the Army of Women, which is a research registry dedicated to trying to find the cause(s) of breast cancer.

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I was lying in bed the other night, unable to sleep, thinking about my upcoming interview with the faculty-staff newspaper reporter and wondering what take-away points I want him to have. And I remembered how I wrote, last year, that I felt like I’d fallen into a nightmare and couldn’t wake up. I have been marveling, since then, at how normal this new nightmare reality seems to me, now. What is the process that happens that makes you adjust so thoroughly to living within a nightmare like a cancer diagnosis and the reality of what modern cancer treatment does to you?

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On other fronts, we got new sonogram pictures of L’il Nubbin. You can see five little fingers and five little toes (per limb!). In one shot his/her mouth is open in what looks like a big grin, mugging for the camera, and in another shot the thumb is firmly in the mouth. I think I detect a little winkie in one of the shots, but since I don’t really know how to read these kinds of pictures, I could be mistaken.

Nubbin is due to arrive on March 9th next year. It was on March 10th this year that I finished my cancer treatments and began my new life. It would be nice to have him/her arrive on March 10th next year, to celebrate new life twice over. But no matter…early March is clearly an auspicious time for new beginnings.

My poor daughter-in-law, though, has been having a rough time of it! She had to quit taking some medicines while she’s preggers, and it’s been hard for her. Already, she’s been a great mom, enduring what she’s had to endure, all for the sake of this little person. She’s trying some other stuff, though, and hopefully soon will be able to feel better. One should be able to enjoy one’s pregnancy, instead of having to grit one’s teeth to make it through. (The gritting of teeth normally comes somewhere toward the end of the last trimester!)

As for my son, he seems totally enthralled by this little person that he’s helped to create, but confessed to me that it seems really bizarre to think of this little thing growing inside of you, and he’s glad that we women are conditioned to accept it as a normal thing because it would totally freak him out.

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Well, it’s October––National Breast Cancer Awareness month––and the flurry of pink is almost overwhelming. What I am finding so disturbing about it is the relentlessly upbeat, positive message combined with the studied avoidance of acknowledging certain brutal truths.

One brutal truth is that not all breast cancer can be detected early. IBC being the case in point. We don’t know what it looks like at an early stage, because it’s asymptomatic then. It only shows itself, at the earliest, when it becomes Stage IIIB––one-third of a tick-mark away from being Stage IV (metastatic).

Another brutal truth is how many women are diagnosed with metastatic breast cancer:

• From the outset (6% for all breast cancers combined; about 30% for IBC
patients);
• Later on (30% for all breast cancers combined; an unknown
number, but much higher, for IBC patients);

…and what having metastatic breast cancer means for a patient and her family. The fact that there *is* such a thing as metastatic breast cancer is quietly elided, overlooked and ignored in the all the pink hoopla about early detection and success stories and finding a cure.

Yet another brutal truth is, when it comes to metastatic breast cancer (or ANY metastatic cancer, for that matter), there are a lot fewer research dollars devoted to trying to find a cure––about 5% of all research money spent. In this month of warm, fuzzy pinkness for the cure, no one wants to talk about that.

Just as no one wants to talk about the fact that with our current state of knowledge, we don’t know how to prevent mets (though we try), nor do we know how to cure them if they appear. The good news is that today we can treat them, hold them off, try to delay their ascendancy. The bad news is that in the end, we cannot cure them. They will win sooner or later in the life of almost everyone who gets them.

And no one wants to talk about what it means to be Stage IV and know that you have to spend the rest of whatever life you have left going through the physical stress of being constantly in treatment, not to mention the financial stress.

Judging from the reactions on the BC listservs I’m on, this refusal of the larger breast cancer community to “own” its sisters with Stage IV disease is painful. Everyone wants to focus on the happy stories. The early detections. Everyone wants to shout “rah-rah” for the noble fighter who emerges victorious over the dreaded beast of cancer of the breast.

But in this month devoted to breast cancer sisterhood, no one wants to talk about the women who fight Stage IV BC every day of their lives, with poor chances of winning the battle in the long run, but who live and work and love and raise families and have real lives every day, despite the fact that they are also in this ultimately unwinnable fight for their lives. The courage, the strength, the amazingness of these women…all ignored. Because they’re Stage IV, and in the end the story that must be told about them, if it is to be told honestly, is that they are not likely to prevail. Sooner or later, BC is gonna get ‘em.

The fuzzy, pink culture of breast cancer primarily honors the prevailers while it sheds tears for those who have already died. But those who are in between––who are fighting a battle that medical science tells us they cannot ultimately win? Those women are quietly ignored. There is little hoopla about them this month. Little hoopla about women living (emphasis on “living”) every day with metastatic breast cancer. And of all the pink money raised for research, far too little of it will be devoted to trying to help these women.

It’s sad.

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I’ve been thinking about the culture of cancer in this country. It’s kind of interesting. I should become independently wealthy and then do a lot of research on this. Anthropological or sociological research.

As I pointed out in my last blog, the alternative health community has a huge, huge focus on what will help people avoid cancer or cure them of cancer. In too many cases, the rhetorical form that this focus takes is on the one-size-fits-all “cure” that costs just pennies a day and could rid the world of the scourge of cancer forever; the successful treatments spurned or, worse yet, actively suppressed by the medical Powers That Be; the financial empires built on the disability and death that cancer produces, which cannot be endangered by actually allowing a cure to be discovered or widely used.

This is a pervasive rhetorical trope within the alternative health community. There are islands of serious research, serious reporting, and serious discussion there…but you really have to search to find them. They are not as pervasive as the other, more simplistic takes on what it means to try to prevent or to treat cancer.

Mainstream American culture doesn’t approach cancer with an attitude that is a lot different than this, really. There, too, there is this huge, huge dread of “The Big C.” In fact, I suspect that the dread of cancer that permeates American culture is the source of the dread that drives so much of the alternative health community, the difference being in how the mainstream versus how the alternative health sub-culture each deal with the dread.

What is most curious to me is the realization that heart disease kills more people every year than cancer. Despite this fact, we don’t seem to have a similar cultural dread of heart disease. I’ve been trying to figure out why this is. I’ve devised two tentative hypotheses:

(1) Much heart disease is not congenital but is lifestyle based. It’s caused not by something defective in how we were put together, but by how we live. In the deep reaches of human history, most people have not lived long enough and had a standard of living high enough to make heart disease as large a concern.

If it existed on the human health landscape with any frequency in deep antiquity and pre-history, I suspect it was as a limiting factor in the human life span that didn’t get identified as “Oh, Grog died of heart disease.” Instead, it may have been identified as “Oh, Grog died of old age.”

But cancer, identified as such, has been with the human race since we first became human. Cancer has gnawed away at our flesh for millennia. It killed slowly, not quickly, like a heart attack, and it was very identifiable as “something gone awry.” Whether we were children or adults, it has been with us forever, taking our lives. It may (or may not) be more prevalent now, due to environmental toxins, etc. But it’s been with us forever as an identifiable evil. Ergo, we’ve had millennia to develop a deeply ingrained fear of cancer, a visceral reaction of revulsion, that goes above and beyond our fear of heart disease.

(2) We have no model for what cancer does to the human body, while we do have models for what heart disease does.

Heart disease is understandable as the wearing out of a body part. We understand things wearing out. Clothes wear out. Our car blows a head gasket. The fuel pump gets clogged and goes out. The capacitor on our heat pump goes bad (happened to me two weeks ago!). Things wear out, break down. Hearts do, too.

Heart disease is therefore not as scary as it might otherwise be. Not being as scary, we don’t concentrate as much of our dread on it, even if the numbers tell us that heart disease is the number one lethal disease in the U.S. We don’t dread it, because we can kind of understand what goes wrong, by analogy with other things like fuel pumps and blown capacitors.

But there are no such analogies for cancer. It’s hard to understand what cancer does to the body. It’s not just a matter of the body wearing out. The body actually turns against itself and starts destroying itself. And this is just creepy and weird.

I was trying to think of an everyday life analogy for what cancer does, and I couldn’t find one. The nearest analogy I could think of was zombies, which is not exactly everyday life! Heart disease is like a blown head gasket (something you might encounter in your everyday life) while cancer is like zombies. The one is natural and you can fix it, the other is unnatural and really hard to fix. And that makes it very scary.

What is it about the idea of zombies that is so scary, as a literary or cinematic trope? They are dead, but not dead the way they should be. They are the un-dead. That’s scary.

But even scarier is that these un-dead come after the living, apparently (my son tells me) with a view toward eating their brains. These not-quite-living-but-not-quite-dead creatures want to cannibalize the living. They won’t stay put as the dead (a cancer cell that didn’t make it in your body), and they won’t stay put in their own little alive-yet-dead realm (a collection of cancer cells that remains localized and doesn’t break out to become metastatic). Instead, they want to invade the realm of the living and cannibalize them (metastatic cancer).

Is there any more apt analogy for what cancer does to the human body? How yucky is that? More to the point, how evil is that?

We don’t tend to think of something wearing out as “evil.” It’s just a normal event in the course of the lifespan of an object. It’s natural. Things wear out and must be replaced or fixed.

But something being cannibalized? Devoured by its own kind? Now that’s just not natural. And that is what makes cancer so scary. So evil. So much an object of dread. Which opens up a range of possible cultural responses….

9-26-2010 – Quarterly Doc Visit, Tumor Bed Effects, Alternative Medicine and The Screaming Ritual

2010-09-26T19:52:00.000-07:00

Here I am, on a warm (but not too hot) Sunday afternoon, having put a sweet potato on to bake, broccoli on to steam, and some Quorn fake chicken nuggets on to cook. The fur children have all just come in because it has finally clouded up outside and begun to rain a bit…and they didn’t care for being wet!

Ah, blessed rain! So as I sit and wait for the smell of supper to lure me away, I will write a short update to you all. (Well, OK. Short is relative, you know!)

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I had my three-month check-up with Dr. J on September 20th. I wasn’t at all anxious, going into the meeting. I had a nice, long initial chat with her nurse practitioner, first. She really gave me a thorough once-over, asking lots of questions and looking over my chest and remaining breast very thoroughly. All looks well.

But then she left and I waited for the doctor to come in and see me. The longer I sat there, the worse I began to feel. All the old feelings came back. The feelings of utter powerlessness, of uncertainty, of being helpless in the hands and according to the whims of another. My future. My welfare. Totally out of my control. As I wrote, later, on my wall on Facebook, there is a feeling that comes climbing up your throat and wants to emerge as either a scream or puke. That’s where I found myself.

It was harder than I expected…and I knew, sitting there, that this feeling was irrational. I know I’m in good shape. I feel good. My blood tests are good—liver enzymes only slightly elevated compared to last time, but still well within normal limits; tumor markers continuing to trend downward even further. I knew that all was well. No miscommunications with the nurse—in fact, a perfectly lovely visit with her. And still I felt this way. Clearly, I told myself, this was the PTSD talking. I tried to take slow, deep breaths and force my logical mind to take control over my bubbling emotions.

When Dr. J finally came in there were three noteworthy things that happened.

First, she said that she thought I looked skinny, and she seemed concerned. There’s a condition called cachexia of cancer that some people get—uncontrolled weight loss and eventual muscle wasting. I knew that’s what she was thinking of. But I assured her that my weight has come off because I have changed the way I eat, and that if I eat enough handfuls of cashews (which are allowed, on my diet), I will get the weight back. I told her that I would like to lose another 10-15 lbs. and then hold there. If I find that I can’t hold, but continue to lose…then we’ll be concerned.

The second thing that happened was that she referred to my changing my medical oncology treatment from Dr. C to Dr. A. She said, “We’ll see if you like Dr. A.” I said that it wasn’t a matter of my not liking Dr. C, and then I said, “But…you roll with the punches.” And she said, “That’s right.” And she changed the subject.

This little exchange left me feeling very unsettled. As if Dr. J thinks that I was not happy with Dr. H, so I changed to Dr. C. Then I wasn’t happy with Dr. C, so I changed to Dr. A. But that’s not the way it was, at all. I changed from Dr. C because she told me she didn’t want to be my oncologist. It wasn’t my idea. It was hers. I just honored her request.

The third thing that happened was that Dr. J refused to take a copy of my “treatment directives” or to comment on them, other than to say, “I think we all know what you want.”

I eventually brought the conversation around, again, to the question of my treatment goals. I asked her if she could give me any reasons why aggressive treatment, in the event of recurrence, was NOT a good idea. She said no. I said, “None at all?” I am continuing to read about metastatic breast cancer, and I’m coming to understand what an argument might be for a slightly less aggressive approach, after all. But she just said no, and that it’s too early to go there and she won’t go there with me right now but will discuss it with me if/when the time comes.

I know that doctors have broad, philosophical reasons for doing things in certain ways rather than other ways. You wouldn’t tell a medical student that they can’t learn anything about how to treat metastatic cancer until they encounter it in a patient, and then they will be taught what to do. No, you would teach a medical student how metastatic cancer is approached, in general, and why. Then you take the instruction down, from there, into more specific hypothetical scenarios. And eventually these scenarios get applied to real patients, adjusting for individual circumstances.

It bothers me a lot that doctors are reluctant to speak in these broad terms to patients, in order to give them a big-picture view of what the future looks like if certain eventualities occur, and why the big-picture view is drawn the way it is.

Fortunately, I have time. I am not metastatic. Yet.

But look at me. I’ve been reading up on this for several months now, trying to get comfortable with what the most likely course of events will be, should I become metastatic. Trying to get comfortable with how things will be approached. Trying to figure out what I want to have happen. Can you imagine what it would be like if, instead of me trying to get comfortable with this at my leisure, now, when there’s no pressure to DO SOMETHING, I had to try to get comfortable with all of this within a week or two so that I could start some kind of treatment?

Last year’s diagnosis came as a big, big surprise, and the learning curve was impossibly steep. It contributed significantly to my feelings of being out of control and totally at the mercy of forces beyond me. I’m all about trying to avoid having those really, really steep learning curves facing me in the future. I wish my doctors could see the usefulness of this, for me, rather than doing everything they can to push that learning curve off into the future, like they do for most other patients, as if the learning curve then would be of no great consequence for me. Don’t they ever learn from the past?

Anyway…Other than these little issues that came up, I did my best to keep the tone of the meeting upbeat and positive. I feel fine. I think I’m doing fine. The blood work seems to indicate that I’m doing fine. All is well. I hoped to leave Dr. J with a good impression of me as a recovering patient, upbeat, positive, looking to the future—a model patient that anyone could like. Hoping that these impressions would filter their way down the clinic grapevine.

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When I got home, though, I was so depressed that I fed the animals and laid down on the couch to disappear into the oblivion of sleep as quickly as possible. When I woke up the next morning, I had decided I couldn’t let it pass uncommented. I knew that I could not force them to educate me, if they refuse to do so. But I could correct errors in their perceptions of what had been going on. I wrote this to Dr. J:

I want you to understand that I did not dislike Dr. C. She indicated to me, on
more than one occasion, that she was uncomfortable being my doctor. At our
meeting in late June she bluntly told me she thought I'd be happier with someone
else. It was very clear she wanted me to leave her. I was devastated. I felt
that if I'd just refused treatment a year earlier, this would all be about over
and I wouldn't have to try to do this any more. But I honored her request. I
asked for a change of doctors. As I said, though, it was not my idea to do so.
It was hers. And my liking her or not had nothing to do with it.

Two days later Dr. J wrote back to say thanks for letting her know. (Like she didn’t, really?)

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There was one other thing that happened in my doctor visit on the 20th. When the nurse and I talked, she was very understanding and very supportive of my fatigue issues. I explained that I’m trying to work about 20 hours per week now and hope to get up to 30 hours per week by early November. I said that women on the IBC listserv have warned me not to try to go too fast, but to take my time and heal properly. They’ve told me it can take from 12-18 months to get your energy levels back up to normal. The nurse said that she’s had patients tell her it’s more like 2 years before they wake up one day and realize that their old self is back. It was nice to be validated like that.

When Dr. J came in and asked about fatigue, I told her the same things. She said that she thinks a 12- to 18-month timeline for recovery is exaggerated. Needless to say, I felt very discouraged. What happens if I don’t meet her expectations for full recovery of my energy in a year or less?

Still, as I said, I tried to keep the tone of the meeting upbeat and positive….

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This afternoon I was going through my email inbox and either deleting or saving old messages. I found a lot of old messages in there that contained questions I had asked of my treatment team last year. It was dismaying to see the number of questions that never did get answered.

People tell me that this blog would make a good book. I’m very flattered, and I do consider doing that. But reading through these old posts makes me realize that shaping all of this material into a book would also be very challenging emotionally. I don’t know whether it would be cathartic, in the end, or just a reliving of recent traumas and sadnesses. Maybe a mixture of both?

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My self-education into the ways of cancer and cancer treatment continue. I’ve recently been reading about what is called the “tumor bed effect.” Turns out, when the doctors warn you about the possible side-effects of radiation therapy or chemo, they don’t tell you the full story. They tell you selected parts of it. They mention the big possible side effects––blistering skin, radiation pneumonitis.

In undertaking treatment, it is just an understood thing between the patient and the doctor that there are no guarantees that the treatment will work. Of course. That makes sense. What is most illuminating––what is not explained––is why it might not work. It’s because of the tumor bed effect.

One reason that a radiation treatment (or chemo, but apparently the effect is more pronounced with radiation) might not work is that it just might not hit and/or kill all of the cancer cells. That’s pretty understandable. You hope it does, but it might not. I think everyone understands this, going in.

Another reason that a radiation treatment might not work is that the radiation also hits normal, healthy cells and changes them in ways that make the micro-environment around surviving cancer cells more friendly to cancer growth, giving them better growing conditions. The real kicker is, these more friendly local growing condition contribute not just to the cancer’s local expansion again, but to its ability to migrate out of the local area and into the rest of the body. To metastasize. That’s the tumor bed effect. (See “The Tumor Bed Effect: Increased Metastatic Dissemination from Hypoxia-Induced Up-regulation of Metastasis-Promoting Gene Products,” Clinical Cancer Research, Volume 65(6), 3-15-2005, pp. 2387-2396.) This is not discussed as a possible consequence of undergoing radiation treatment. I think it ought to be.

Cancer cells seem to grow not just by bulldozing their way through healthy tissues, multiplying out of control, taking up vital nutrients that healthy cells should be getting, and refusing to die. Cancer also seems to grow by subterfuge—by tricking some kinds of healthy cells, including parts of your own immune system, to produce substances that help cancer grow. This happens as a normal part of the aberrant growth process that is cancer. (See “The Hallmarks of Cancer,” Cell, Volume 100, 1-7-2000, pp. 57-70.) In a nutshell, it is what happens, too, in the tumor bed effect. But with an added boost.

If the tumor bed effect occurs as a result of radiation treatment, what you can wind up doing is actually enhancing this aberrant growth process so that any cancer cells that may have survived irradiation have an even better chance of eventually growing back locally and then metastasizing. In short, your radiation treatment may (everyone hopes) help to cure you by killing off the cancer cells. But if it doesn’t, it may also make the cancer more virulent than before. No one tells you that this might happen. I think they should.

It’s all a matter of relative risk, I think. The known benefits of undergoing radiation therapy, versus the known risks of doing nothing, versus the possible risks of creating a tumor bed effect.

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It is believed that the mechanism of action in the tumor bed effect has to do with how ionizing radiation creates conditions of lowered concentrations of oxygen in tissues that are hit. Hypoxia. The hypoxia causes certain genes to kick in and produce certain proteins, which wind up being exactly the kinds of proteins that help to promote metastasis.

But conditions of hypoxia are not only created by radiation treatments or by chemo. It is a common characteristic of solid tumors (as compared to blood tumors) to have areas of cells that are hypoxic––that do not have a normal oxygen pressure gradient within or around them. These hypoxic cells are particularly resistant to the effects of chemo or radiation, which means that any tumor having many of these kinds of cells is likely going to be quite difficult to treat successfully. (See the above article from Clinical Cancer Research, plus “Review: Implications of In Vitro Research on the Effect of Radiotherpay and Chemotherapy Under Hypoxic Conditions,” The Oncologist, Volume 12, 2007, pp. 690-712.)

As a result of reading all of these things, I’ve begun to wonder about the usefulness of increasing the levels of oxygen available in my body. I would do this in order to support my healthy cells, in order to deprive any remaining cancer cells that might be floating around of any kind of favorable microenvironment for further growth, and to make any remaining cancer cells more susceptible to the treatments I’m still taking. The question is, how should I try to do this?

Improved oxygenation is probably one reason why studies show that breast cancer patients can cut their risk of recurrence in half by engaging in aerobic exercise for 30 minutes a day, five days a week. So I could exercise. (I’m trying to build that into my life, now….sigh.)

I could do pranayama yoga, which focuses on various breathing techniques—some of them very vigorous and oxygenating!

I could try to find a hyperbaric oxygen chamber and sit in it for a few minutes every week.

I could have ozone therapy, in which some kind of ozone would be injected intravenously. (I understand this is very expensive! For that matter, hyperbaric oxygen probably is, too.)

Or I could take oral food-grade hydrogen peroxide. I’m giving this some serious thought. It has the advantage of being fairly cheap (unlike my supplement regimen, which even at ½ what my nutritionist wants me to take is still costing me an average of $200 per month).

Before I do anything, I need to investigate the interactions between the anti-oxidants I’ve been taking as a part of my supplement regimen and the oxygen I would be taking in. I’ve read briefly in one place that the two do not cancel each other out…but I need to look into this more thoroughly. I certainly won’t be changing my supplement regimen for the sake of taking H2O2––clearly the regimen has been working very well for me. It’s for that reason that I need to investigate taking H2O2 more carefully. I don’t want to upset a plan that seems to be working!

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In reading about the tumor bed effect, I’ve had to read about the experiments they’ve done to understand hypoxic tumors. They do these experiments by causing tumors in mice, then “sacrificing” or “euthanizing” the mice at 28 and 51 days after causing the tumors.

I read these studies and even though the work being done is to help maybe save my life some day…I find myself feeling very, very, very sad about the mice.

How would you like to be born and live your life in a tiny cage, forcibly subjected to radiation you didn’t need, forcibly caused to develop cancer, and then killed so they could study the cancer they gave you? The very thought makes my heart race ….

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I’ve continued my reading into the cell biology of cancer. Of course, I can’t understand this in anywhere close to all of its complexity, because I don’t have the necessary educational background. But I do understand a few things. Most importantly, I understand that cancer is not one disease; it’s about 100 different diseases that have certain gross similarities.

As “The Hallmarks of Cancer” article points out, the similarities among cancers can be grouped into six basic functional areas, all of which are governed not just by one process, but by several sets of processes. In other words, each functional area is over-determined; there are alternative pathways and back-up systems that make each functional area work the way it does. But sometimes key parts of the mechanisms that govern these functional areas go wrong or are overwhelmed by defects in the other parts, and cancer is the result. The functional areas are:

1. Growth: Cancer cells develop the ability to grow just because they want to,
rather than based on signals from their local environment that usually regulate
cell growth.

2. Quiescence: At the same time, cancer cells develop the ability to block out anti-growth signals that are normally triggered when no more cell growth is needed in a given area of the body.

3. Apoptosis: Cancer cells develop the ability to ignore signals to die so that younger,
fresher cells can take over.

4. Replication: Cancer cells replicate over and over, rather than stopping after about 60-70 doublings, as normal cells do.

5. Angiogenesis: Cancer cells acquire the ability to instigate the growth of new blood vessels to supply themselves with nutrients.

6. Metastasis: Cancer cells acquire the ability to break free of the structural couplings that keep them attached in their local environment (that keep breast
cells in the breast, for instance) and move, instead, into more distant parts of
the body––metastasis. It is this ability that accounts for about 90% of all cancer deaths, rather than the growth of cancer cells in the local environments where they originated.

As the article points out, there are a variety of pathways to the development of cancer, and defects in these pathways can happen in a variety of sequences and give rise to different kinds of cancer cell types, even within a single tumor. The bottom line, take-away message, for me, is that cancer is the result of an incredibly complex series of breakdown events within the human body. It is not a single, monolithic disease.

Therefore, any treatment that claims to be a “panacea” capable of curing any and all comers strikes me as a little suspicious. Yet this is exactly the kind of claim that is made for many alternative treatments, including the use of food-grade hydrogen peroxide.

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I have been spending a lot of time working on my PTSD issues from my childhood hospitalization and the events of last year, trying to understand how the one affected the other. Trying to figure out if I should have—or even could have—done anything differently, to have produced a different outcome. I don’t mean cancer outcome. I mean human outcome. Social interactions. The people I had to work with. Or try to work with.

In looking at tumor bed effects and hypoxia, I was reminded of a “book” that a friend sent me, early-on, about food-grade hydrogen peroxide. So I got it out and read it. The author calls H2O2 a panacea (his word)––able to cure just about any and all human ailments. It sounds just like so many other alternative health things I have read, over the years….

I felt myself getting irritated, sitting there and reading that book telling me that all I had to do to cure the cancer I had was drink H2O2 in my water every day. (It’s one thing to think about doing this as part of an integrative program, I think. But another matter entirely to rely on it as the sole treatment modality for cancer! Yet that is exactly what the author was advocating.)

It was then that I realized for sure that not only have I been battling with the PTSD of my childhood and the normal fears inherent in getting a cancer diagnosis, I have been struggling with a particular worldview about cancer treatment. A worldview that up until I was diagnosed with cancer made a great deal of sense to me, given the medical trauma in my past. But a worldview that has made it very, very difficult for me to try to relax and trust my doctors.

This is the worldview of the medical establishment that is propagated by too many people in the process of trying to promote whatever alternative health therapies they espouse. In my heart, that worldview has resonated with me, more often than not. I think it has affected, and continues to affect, how comfortable I am with the medical world––and most especially, with those who treat cancer.

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Some of the literature about alternative cancer treatments is very good or reasonably good. I just read two really good articles about the use of 3,3-diindolylmethane (DIM) to cause cancer cells to arrest their growth and engage in apoptosis. These were articles in peer-reviewed medical journals (Molecular Cancer Therapy and Cancer Letters). I’ve been taking DIM for more than a year, based on the advice of (and research citations supplied by) my nutritionist. It was nice to see these articles in support of my decision to take this supplement.

Not all alternative treatments have the privilege of being the object of much study, though. I appreciate this, and I understand that a big reason is because there is little interest in potential treatments that are not patentable and thus financially lucrative for pharmaceutical companies. Even the relatively little research into alternative treatments that is funded by the government is often supported with an eye toward some private-sector company eventually being able to market the fruits of the researchers’ labors. So I understand that some good alternative treatments may exist out there that have limited experimental evidence behind them. I don’t think something should be ruled out just because it doesn’t have a Phase III clinical trial supporting its use––or even a Phase I trial!

But then again, too much of the written material that promotes alternative therapies is written like this book I was reading on food-grade hydrogen peroxide. It reads as much like a screed against the medical establishment as it does like a credible, reasonable statement in support of an alternative approach to a medical problem.

The author of the H2O2 book says that the book is based on “research” he has conducted, but he never reports on any of his own work. (I suspect it’s because it really doesn’t exist, in the sense of laboratory or clinical work.) He talks vaguely about studies others have done or speaks in general terms about the thousands of doctors in Europe who use food-grade H2O2, but never once provides any citations to these studies. The bibliography of the book consists of 12 entries, half of which come from journals that appear to be medically oriented, the other half of which appear to be popular publications (some self-published?). So in terms of documenting the claims he makes, the author does an incredibly poor job.

What is worse is the rhetoric that is used to present the idea that food-grade hydrogen peroxide might have health value. He starts by criticizing ancient medicine for relying on appeals to authority in matters of healing, rather than something more substantial. But then he points out that the 20th century’s reliance on the scientific method and evidence-based medicine is problematic, too, because it has led to the establishment of treatment protocols that have suppressed alternative approaches to medicine. If this left us with only evidence-based treatments, it might be somewhat forgivable. But unfortunately, it’s not that simple, since the scientific method that gives rise to the “evidence,” is, itself, flawed by the researcher’s tendency to see the results he or she expects to see (confirmation bias). The author goes on to point out that medicine has become too complicated, dividing the human body into organ systems and specialty medical practices that prevent doctors from seeing the whole patient as a system.

He protests, at this point, that he doesn’t mean to discredit doctors or medical institutions, but only wants to point out that our medical system is ineffective because it focuses on illness rather than wellness, promotes expensive and dangerous procedures and products, and ignores simple, natural, inexpensive procedures and products. He says that most drugs don’t cure disease, but only alleviate symptoms, and almost all of them have side-effects. They are used, he says, because of the multi-million dollar advertising campaigns of the pharmaceutical companies that manufacture them.

And all of this he says in just the first eight pages of the book.

For the next two pages he says that the body needs oxygen and that all disease is caused by lack of adequate oxygen in the body, and he says that the rest of his book will provide solid proof of this. Yet as I mentioned above, the “proof” this author provided didn’t even come close to the kind of proof that the authors of the two articles on DIM provided. Instead, most of the rest of the book is given over to repeated dissing of the medical profession. The statements he makes are pernicious:

“Disease is big business…There is no incentive on the part of the pharmaceutical
industries to promote better health….The average business person in his right
mind wouldn’t dare walk away from such profits, and would do almost anything to
ensure that the trillion-dollar cash cow remains intact….As a result, the
pharmaceutical industry has assembled a pharma-cartel” (16).

“The pharmaceutical industry has more to gain when people are sick than when they are well. Therefore, they manufacture drugs that only relieve symptoms but do not
cure disease. There’s a vested interest in keeping people sick…yet…making themselves look like the savior of all mankind” (17). [Message: Don’t trust them. They don’t really want to cure you.]

“More people have died from preventable diseases [due to] the industry’s suppression of information about non-drug health alternatives that could have kept people from dying” (17). [Message: Be careful! They may kill you!]

“Pharmaceutical companies routinely use their power and unlimited financial resources to keep doctors from prescribing natural therapies…” (17).

“The Food & Drug Administration (FDA)…makes it a priority to promote drugs and the financial interests of pharmaceutical companies…because many of the FDA’s senior management and members of its advisory committees accept more than $50,000 apiece in corporate grants, contracts and consulting fees from pharmaceutical companies” (18).

“Fictitious diseases are ‘invented’ all the time by the pharmaceutical industry for no reason other than to sell prescription drugs” (19).

Then there are eight pages wherein the author trashes “nutrition” as a big business, too, that is full of fads supported by nothing more than anecdotes. (I had to wonder at the author’s disingenuity, here. His book lacks research and citations and relies on broad, global claims that don’t even quite reach the level of anecdotes!)

On page 32 the author exclaims that he was floored by the “mountains of evidence” showing that food-grade hydrogen peroxide is a useful treatment for myriads of human ailments and is used all over the world. But again…no citations for these mountains of evidence. No references to specific places in the world. Just global assertions.

Then he gets back into the mode of dissing conventional medicine:

Simple and effective therapies like H2O2 threaten the pharma cartel, so they
suppress the info, lobby against it or give information about it a negative
spin, sometimes going so far as to imprison people who promote it (32).
[Message: They are out to get you. Be careful!]

There are then 15 pages of information about why H2O2 is good to use and some very general information about how to use it (in distilled water), only to lapse once more into a diatribe against the medical profession:

The medical industry and pharmaceutical industry don’t embrace H2O2 because
there is no financial incentive. And doctors’ livelihoods would be threatened if
virtually all diseases were to be eradicated so simply and inexpensively (47).

A little bit more info about places and times where H2O2 has been used, then more dissing of the medical profession on page 58 and 59, using the same themes that he’s used before.

Finally, the author settles down into a lengthier discussion of how to use H2O2 in various forms for various ailments. But the book would not be complete if it did not end, again, with a series of slanders of the medical community:

The use of H2O2 would make the jobs of doctors and researcher unnecessary and
pharmaceutical companies would become superfluous. There’s no money to be made in simple answers. The doctors and pharmaceutical companies want to keep us
dependent on them (99). [Message: They don’t really want to help you; they want
to control you.]

“…in the meantime, the pharmaceutical and medical industries will continue to get rich while people die from ineffective and dangerous treatment options” (100). [Message: They may kill you with their “medicines.”]

A warning not to believe the negative spin that the medical and pharmaceutical industries will try to put on the use of H2O2 (100).

Medical students are deliberately not taught about simple life-saving methods (100).
Medical boards actively prevent doctors from using H2O2 in their practices (101).

“If the treatment were to be accepted today, the FDA and many others would have to take responsibility for the thousands of people who have died because they caused this vital information to be withheld form the public” (101). [Message: Doctors will kill you using the methods they have chosen to validate and promote.]

It comes down to money. Incomes are threatened by the use of something as simple as H2O2. The pharmaceutical companies will do just about anything to protect their financial interests (102).

Beware of “quack watchdogs” who are mostly strategic plants of the pharmaceutical companies with the intention of discrediting alternative therapies that gain popularity, brand the doctors who use these therapies as quacks, and “disseminate fabricated adverse effects” (104).

Pharmaceutical companies want to keep us in the dark and rob us blind (105).

This, from the man who didn’t want to discredit doctors or medical institutions.

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Over the years, I have had a few friends who are totally into alternative health and seem to believe that 99% of all doctors sit at the right hand of Satan himself. They have sent me info on alternative medicine, and I’ve often read it and sometimes filed it away for future reference.

One of the biggest bug-a-boos in the alternative medicine world is the fear of cancer. The Big C. So over the years I’ve had a chance to see a lot of alternative-slanted info about cancer prevention and cancer treatments that strike pretty much the same tone as the book on H2O2 that I described above. But in this case, the focus of this alternative medical info is on how doctors and pharmaceutical companies don’t want to cure cancer, they kill more people with their treatments than they cure, etc., etc., etc.

Imagine having been scared to death by doctors and hospitals when you were five years old. Then imagine having been steeped in this alternative medicine “don’t ever trust the medical establishment––especially when it comes to cancer” rhetoric for most of your adult years. Then imagine getting an aggressive, late-stage cancer.

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My worldview, the way I understood what I needed to do to take care of my body, came crashing down last year. I knew in a moment that despite the years of indoctrination about doctors (oncologists, in particular) sitting at the right hand of Satan, I had to submit to conventional treatments. This was too aggressive and too serious to rely solely on alternative measures.

Yet at the same time, I couldn’t just forget the trauma and couldn’t just ignore the warnings I’d been reading for decades about cancer treatment and how evil it is. I couldn’t relax. I couldn’t just blindly trust.

Confrontation with old traumas. Collapse of long-held worldviews. It was a difficult year.

I think that these things really impacted the interpersonal aspects of how that year unfolded. But I’m not at all sure what I should have or could have done differently. I am grieving that it all turned out the way it did. But I don’t know how I could have made my way through the process much differently.

Equally important, I don’t know how I will be able to make my way forward, into the future. I have oncology in my future for the rest of my life. With any luck, it will be a fading presence as time goes by. But maybe it won’t. Maybe it will return to be front and center again. If that happens, how can I make things go differently next time?

As a part of my attempts to understand medicine more from its own point of view, like a good anthropologist, rather than from the point of view of those whose agenda involves a large amount of trashing it, I have been reading medical autobiographies. I’ve been focusing on stories doctors tell about how they got to be doctors. It is not comforting to read about the cases where they blew it––where they ignored something or made a wrong call, and someone died as a result. One book, written by an ER physician who practices just up the road, in Durham, says that every doctor kills an average of three patients during the years of his residency. The current edition of the Reader’s Digest has as its cover story “Doctors Confess Their Fatal Mistakes.”

Even if doctors in general, and oncologists in particular, do not sit at the right hand of Satan, it is frightening to think that I could be the victim of one of their mistakes. I could be one of some resident’s three deaths.

How do I find the ability to trust, in all this? But if I can’t find the ability to trust, how can I make any future “deep encounters” with the medical profession––especially oncologists––turn out differently than this year’s encounters have gone? I feel like I’m in a hopeless psycho-emotional quagmire.

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One of the worst things about becoming a resident of Cancer Land is the people you meet there. Not the doctors and nurses, with their questionable relationship to Satan (LOL!), but your fellow residents, who you come to know and care about. When their lives take a turn for the worse, it makes you ache inside.

I have several breast cancer sisters here locally. Two of them are having problems. One is 33 years old. She finished up her breast cancer radiation treatment just two weeks after I did in the spring. This last week she was hospitalized with what appears to be the return of her cancer. It looks like it’s metastasized to her liver and her bones. She was on Zometa, too. The final word isn’t in yet, but it doesn’t look too good, right now.

The other friend is turning 40 tomorrow. She was hospitalized at the same time, in the same hospital, for symptoms that look like they might indicate permanent damage to her heart because of her breast cancer treatment, which she finished not too long ago.

If God were a fair God, he would not visit these kinds of afflictions on women who haven’t yet lived their full adult lives. They’ve fought once. That should be good enough for awhile. What’s happening to them is just not fair.

I am considering creating a screaming ritual. I’m sure it would catch on in some quarters. It would involve going to an area in the country where you wouldn’t disturb the neighbors, dancing in a circle, flipping the bird, and screaming at the Cancer God, “Leave her alone!”

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So there you have it. Doctor’s appointments, tumor bed effects, hypoxia and cancer growth, food-grade hydrogen peroxide, the rhetoric of some in the field of alternative medicine that paints oncologists (in particular) as servants of the devil, and friends beset by cancer and the permanent and serious after-effects from cancer treatments.

It is odd, then, to know that on more than one occasion, as I am traveling the 15-501 between Pittsboro and Chapel Hill, a peace has settled over me and life has seemed good. I can’t explain why this should be. But sometimes, it just is.

September 12, 2010 Update –– Naked Ladies, Coyotes, Kicking & Screaming, and the Fours

2010-09-12T20:02:00.000-07:00

At long last, the heat and humidity of summer appears to be passing and the fall is on its way. The days are deliciously warm (upper 80s), and the nights are cool. The naked ladies (don’t get excited—it’s a kind of flower with no leaves on the stem) are blooming furiously, despite the dry conditions, and a few trees here and there are beginning to show signs of yawning and stretching, preparing for a winter’s nap. Like the trees, I’m preparing for what is to come. I’ve been laying in a supply of firewood and running my generator monthly to keep it in shape for unexpected needs. I need to go get more emergency gasoline.

But it’s not too early in the season. We still have hummers fighting over the feeders. They haven’t gone south yet. And the bright yellow birds that grace my seed feeder still appear from time to time. They may be packing their bags, but they haven’t left for warmer quarters, yet.

I had a first, the other day. I was driving in toward Pittsboro when I saw this dog with an odd gait running through a pasture near the Rocky River. When I looked more closely, I realized that the “dog” was in fact a coyote! I’d heard that we have them in our area, but I’d never seen one. It was pretty cool. But it makes me a little nervous about letting my cats stay out at night (as they like to do), and nervous about letting my older dog, Bellah, stay outside when I’m gone. She’s half blind, half deaf, and can’t smell worth a hoot. She sleeps very, very soundly because no outside stimulus can bother her…and if a coyote were to come near, I don’t think she’d wake up and realize that she was in trouble.

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This has been a good summer, on the whole. I have slowly been recovering from the effects of my treatments. Most days I have a background level of fatigue that I just push through in order to work a few hours or go to various medical appointments. I have to sleep 11-12 hours a day to function at this level, but when I do, I feel pretty close to human.

Some days it’s just too much, though. I can’t bear it. The fatigue is overwhelming. I wish that someone would shoot me so I’d have an excuse to lie down. But on very rare occasions I have a day that is so inexplicably good that I think I could work a 60 hour week and have energy left over to do all of my household chores, to boot! If I could only figure out how to replicate those days on demand!

For most of the summer, my big “to do” has been to try to catch up on all of the outdoors chores that didn’t get done last summer. That means lawn work. My energy levels were so low, though, that I decided to hire a couple of the neighborhood teens to do my mowing for me. Besides, my riding mower went on the fritz and I just didn’t have the mental stamina to deal with trying to figure out why and what to do about it. Thanks to my friend Ernie, the mower is now fixed and I’m back to riding my own mower about! This last mowing was one I did all by myself. I’m still not very keen on the push mower and the weed eater, though. They take a lot of energy and make my hand-foot syndrome flare up.

My big outdoor achievement, this year, was to do something I’ve been saying I was going to do since I moved out here, but just never got around to: making this place more low-maintenance. For starters, this means putting down weed block and mulch in areas that are hard to mow, creating what I hope are pleasant-looking bedding areas that don’t require mowing, forming borders along the larger grassy areas that are then easier to mow. Putting out mulch has been a long, slow process, but I’ve looked at it as a part of my exercise regimen to build up my strength and stamina. My last mulching effort was on Saturday morning of Labor Day weekend. It took me the next three days to recuperate from the exertion, but I did it!

Tasks yet to get done: painting the carport next to my garden shed, putting in a gravel path in front of my firewood stacks, washing the north and east faces of my house with vinegar to remove the green mold creeping up on the siding, and putting down the landscaping timbers around the beds in the veggie garden. Oh well. There’s always next summer!

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I’ve begun a new phase in my anti-cancer treatment. I was taking oral bisphosphonate (Boniva) both because the anti-hormonal drug I have to take (Femara) will weaken my bones and because bisphosphonates have been shown to reduce the risk of breast cancer returning in the bones (and to some extent in the soft tissues like lungs and liver, too). But the oral bisphos was making my esophagus burn and hurt for days after I took it, so I decided to make the switch to IV bisphosphonate—to Zometa.

I had my first treatment on September 10th. It was a curious thing, to be back in the cancer hospital and sitting in an infusion chair again. I remember sitting in the lobby of the cancer hospital, while I was in the middle of chemo, and thinking with amazement at how normal and natural it seemed for me to be there. How much I felt like I belonged there. And how strange that was. But on the 10th, it just felt odd to be there. Not necessarily bad…but not quite “good,” either. As if I’d fallen back into a universe where an endlessly repetitive time-loop got re-played, over and over again. The same things happening, over and over again. Day in and day out. World without end. To whom they are happening is not important. That they are happening is the only thing that seems to matter. And on the 10th, it was to me that they were going to happen.

The infusion went without a hitch. We had to wait some time for the preliminary blood work to get done, so they would know that I am healthy enough to get the Zometa. While we were waiting, the young oncology fellow “informed and consented” me, since this was the first time I was to get this drug.

It still amazes me that they do this just minutes before you’re due to get the drug in question. In an emergency situation, sure. I can see being informed and consented just minutes before you undergo a necessary procedure. But in a situation like this, where it’s a calmly planned procedure, it seems that a truly informed consent requires more lead time than just a few minutes. At least a week would be more like it, as far as I’m concerned. Then again, maybe for the sheeple a few minutes is more than enough time….? But for the rest of us…. OK. Now I’m getting catty. I will cease and desist.

Of course, I have been doing my own research on Zometa and bisphosphonates in general for a couple of months, now, so I knew everything that the tired-looking young doctor-fellow was telling me, but I listened politely and tried to look interested. When she was finished, I said, “I do have one question. I’m not going to need another Zometa infusion for six months. That means the Zometa I’m getting today will be active in my system for all the time up until then. Where does it live, during these next six months? Is it circulating in my blood and slowly releasing into my system during all that time? Does it all glom onto my bones right away and then slowly dissipate over the next six months, until I need another dose to glom on again? How does this work?”

She just looked at me wearily and said, “I don’t know the answer to that. You can ask your doctor when you see her next time.”

Yeah, right, I thought. I won’t see her until December. So much for informed consent.

The infusion went well enough. What with all the waiting for the blood work, then the pre-infusion hydration with a saline drip, then the infusion (which I asked to be specially slow, since this was my first exposure to the drug), then the post-infusion clearing with more saline, I was in the infusion chair all afternoon. It was a blessed time to just sit and snooze and watch re-runs on TV and encounter those odd rumbling feelings as I reminisced about my days as an active cancer patient.

Then it hit. The next day. A weekend, doncha know. Somewhere around 1/3 of those who take Zometa get a fever and muscle aches and pains…your basic flu-like symptoms. I was one of those 1/3. (I have decided that the “glomming” theory of where the Zometa lives makes the most sense of these crappy symptoms!) The instructions I was given by the weary young doctor said that I should call my health care provider if my temp reached 100.5 degrees. By the early afternoon, it had, so I called the hospital and left a message for the oncology fellow on call to please call me. I’m just following instructions here, right? Not trying to be a hypochondriac or a pain. But whoever the fellow on call was, they never did call me.

I could have called back and been more insistent (bordering on becoming a pain?), but after falling into another nap, I woke mid-afternoon and realized that my fever had gone down again, so it seemed kind of pointless. Besides, I was afraid that they’d insist I come into the hospital. If I had to do that, it might call attention to the fact that I had gotten Zometa, and it might make my insurance company wonder why they had incurred this extra hospitalization expense in the aftermath of my taking that drug. And it might make them wonder why I was taking it, and was the risk of osteoporosis high enough, for me, to make my taking Zometa worthwhile. (Using Zometa to help prevent recurrence of breast cancer is not yet an approved use of the drug, though there is preliminary clinical evidence for it, so that rationale for my taking it will not fly with them. They’d rather I just get a recurrence somewhere down the line and then they’d have to pay THOSE expenses, instead.) And if they disapprove paying for the Zometa, I can’t afford to pay for it 100% on my own, and so I’d have to quit taking it. Which would put me at increased risk for osteoporosis and (most importantly for me) for a recurrence of the cancer in my bones.

Nope, I thought. The best plan is not to draw undue attention to myself. Avoid the hospital if at all possible.

But at midnight, the fever was back, even higher than before. So I called again. The oncology resident on call literally yawned their way through our conversation. Although my temp was then 100.9, he told me that I should take ibuprofen and call back if my temp went up to 101.5. I was not exactly reassured by his unconcerned attitude, but I still had that desire to avoid drawing attention to myself by going to the hospital, so I figured I’d give it a try.

So far, it’s worked. I’m sitting here writing this blog entry instead of trying to pass the time from a hospital bed on the weekend—the longest, dullest time to be in a hospital! I get a little queasy if I try to eat very much, but I’m ambulatory and not febrile any more. And this is good.

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I’ve been reading up on the side-effects of Femara. I have entered the Medical System Merry-Go-Round and am not sure whether I’ll ever be able to get off without endangering my life. Femara side effects such as possible increased risk for bone fracture are met by taking another drug, bisphosphonates. Femara side effects of possible elevation of cholesterol would be met by taking cholesterol-lowering medications. Side effects from *those* medications would require me to take yet other medications.

Where does it end?

My whole philosophy of life has been to get off of the medications and stay off of them as much as possible. Now that I’ve had this aggressive kind of cancer, am I doomed to be on the Big-Pharma Merry-Go-Round for the rest of my life? Or have a very, very short life?

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Well, much has happened since Dr. C told me she thought I’d be happier with another oncologist and Dr. A, her erstwhile replacement, cancelled my introductory appointment on July 1st, just two hours before it was supposed to occur.

At the time of the cancellation, the scheduler who called me (on the authority of “the doctor”) insisted that she could only schedule me with Dr. C again for later in July, so I had accepted the appointment. However, after my lament to my oncology nurse, Denise, that no one wanted to see me, a new appointment had been set for me with Dr. A for two days later than my re-scheduled appointment with Dr. C. This meant I had two medical oncology appointments with two different doctors –– and just two days apart!

I asked Denise whether I should keep my appointment with Dr. C, and she said no. Dr. C told Denise that if I have an appointment with Dr. A., there’s really nothing she has left to say to me. This, of course, contradicts what Dr. C had said in her voice mail message to me, in which she herself told me about a the appointment with Dr. A and said she wanted to talk to me “about all of this.” Clearly Dr. C had changed her mind about even having another discussion with me.

I did not say anything to Denise about this contradiction. I just let it go. Denise observed, though, that everyone on their end was upset about the whole appointment cancellation thing and that no one could explain it. I said I understood. She made it sound as if this cancellation produced a tiny tempest in their little teapot, and I found that a little bit gratifying. Of course, I have no way of knowing whether the tempest was because of mortification over lapsed care for a patient, or fear of liability at seeming to refuse care. I’d prefer to think it was the former, but who knows?

With a catch in my voice, I said that I was right, then. That Dr. C did not want to be my oncologist. Denise said that Dr. C felt we just weren’t a good fit and that I didn’t trust her enough for her to be my oncologist. I said that I can’t give blanket trust to anyone, even if it were Mother Teresa sitting there in a white coat across from me. Both because of my past, but also because that’s just the kind of person I am.

I said that I didn’t think I had asked Dr. C for anything so outrageous, in simply asking that if I get a recurrence I be treated to bring me back to NED status rather than treated first and foremost to simply contain the cancer. Denise said she didn’t think it was what I asked for, but the way I had asked.

I let it go. I didn’t argue with her. But to myself, at this point, I wondered what she meant. What had Dr. C told her I’d said? While I was definitely passionate, when I asked, I did not shout, raise my voice, curse, etc.

The only thing I did was contradict her. Politely but firmly. After I asked her not to treat me palliatively, Dr. C had tried to explain to me what was meant by “palliative” care, thinking that I just didn’t understand what the term meant. I told her, after she finished her explanation, that this was exactly what I did not want as my first option if I get a recurrence, and why. And the conversation proceeded from there. I was never rude or demeaning, but I also didn’t back down in the face of her definition of “palliative.”

I asked Denise if she thought that Dr. A would be likely to be able to work with me. I said that I need someone who can handle not just the physical aspects of medical oncology, but who can help me deal with my anxiety and fears, and who is prepared to answer a lot more questions than your average patient, at more depth than your average patient.

She said that Dr. A is accustomed to patients with a higher level of education who come in with articles they’ve read and want to discuss them. She said A has an entirely different personality than C and is “efficient.” She said that a couple of times. It lead me to think that this is a euphemism for “abrupt” and “not likely to spend much time with you.” I told Denise that this relationship with Dr. A needs to work because I cannot go elsewhere. I will get my treatment at this hospital.

After this conversation, I felt utterly defeated. I could not help thinking that if I’d just refused treatment a year ago, all of this would have been almost over now. I didn’t want it to be almost over. But at least I wouldn’t have to deal with doctors any more.

At times like these, I just want to escape into sleep, and that evening it’s precisely what I did. I laid down on the couch to watch TV and of course fell asleep. Although I was watching TV, they were re-runs and I thought maybe I’d read, instead. I held my current book, Dying Well, to my chest, as I drifted off to sleep. For some reason, it comforted me to hold it like that.

------------------------

I couldn’t help but think, in the ensuing days, that it’s a real tragedy. I have had an aggressive cancer and been brought to NED status. This is no small feat.

But I felt like I was throwing this boon away with my thoughts about just dying so that I wouldn’t have to deal with oncologists any more. I tried to resist that thought—that thought that I want to get sick again and just die, because it would be easier. I wouldn’t have to have relationships with any of these people, then.

It was hard to not have these thoughts, though. Which made me vaguely panicky, because I felt like I am bringing evil upon myself, again, by having these thoughts, and that I will come to regret it later, after it’s too late.

------------------------

I met with Dr. S, the retired radiation oncologist who has Stage IV breast cancer, a week or so later to ask her about why treatment for metastatic breast cancer is palliative and not more aggressive, so as to try for NED. But we wound up talking mostly about my situation with Dr. C. It was a really amazing conversation.

I explained, briefly, my traumatic medical past and how I’ve managed to deal with that trauma, all these years, by avoiding the medical profession as much as possible. I explained that I have a serious case of white coat syndrome (extreme fear of doctors) and that I’m dealing with it in the best way I can. I said that I was so blindsided last year by my diagnosis that I don’t want to ever have that happen again, so I’ve been researching what the future might hold for me, as someone who has had inflammatory breast cancer. She didn’t seem to think that this was undesirable or abnormal at all. She thought it made perfect sense for me to want to do this.

What was best of all is that she seemed totally tuned in to me, as if she totally “got” me. She would finish sentences for me, and they were exactly as I would have finished them. Or she would say something that was the next thing I was going to say, before the words had left my lips. And it was never with a “but” attached at the end. No countervailing point of view was introduced, at the end of her validations, that might negate my own. She just gave me a simple recognition and validation of what I was thinking and feeling.

It was really remarkable, and I couldn’t help but think that if I’d had care providers who had been able to do this for me from the outset, it would have been much easier for me this past year. Not smooth, because I do have my anxieties and my needs. But those anxieties and needs could have been addressed more effectively if I’d had someone like her to help. I think.
Dr. S observed that Dr. H was paternalistic (her word, not mine) and that he excelled in treating little old ladies who were totally good with that kind of approach. But she could see where it might be less than desirable as an approach for me. I said that on a personal level, I really like him. But I had used the same word to describe him as a physician—knowing that he intended to be reassuring, but to me it came across as paternalistic and patronizing.

When it comes to how to treat metastatic breast cancer, she said that when she was practicing she tended to be a “middle of the road” treater, and that she sometimes thinks that older women who come in with breast cancer can be more debilitated by the treatments than is worthwhile for them. So she tends to want to back off some. But she said she appreciated the fact that I, myself, wanted very aggressive treatment.

I explained what had happened with Dr. C telling me to get another oncologist, me making the appointment to see Dr. A, that getting canceled at the last minute, Dr. C’s voice mail message to me, and her then deciding she didn’t want to talk to me after all. I told her how bad it had made me feel.

She said that what probably happened is that no one communicated to Dr. A that I was needing to transfer my care. So when Dr. A saw my name on the patient list, she thought it was a scheduling error and told the scheduler to put me on the “appropriate” doctor’s calendar at the first available time.

She also said that Dr. C tends to be inherently unsure of herself. She doubts herself and whether she’s doing enough. So I no doubt pushed her buttons with the dialog about treatment for metastatic disease. She said that she thought it was good that Dr. C had stood up for herself and set her boundaries with me, according to what she felt comfortable with. Apparently this is out of character for Dr. C. But she also understood how it felt to me.

Dr. S said that she chose Dr. C to be her physician because she tends to be a little bit less aggressive in treatment, whereas Dr. A tends to be more aggressive. At the same time, Dr. C allowed Dr. S to continue a fairly aggressive chemo regimen past a point where Dr. C felt it was prudent. (I couldn’t help but think that this was allowed because Dr. S is a fellow physician who knew what the real safety limits were…but what would have happened if Dr. S had not been so well educated about these things? Would she had been allowed to continue the more aggressive treatment, or would Dr. C have pulled her off of it before she was ready to give it up? Would Dr. C have treated her more palliatively, even at the start?)

Finally, Dr. S said that she thought my relationship with Dr. C could be salvaged if I just went to her and said I’d like to start over. But, she cautioned, she thinks I have just about exhausted my ability to remain in the hospital breast clinic, by going through three of their physicians, now. That I am more or less “branded” as a difficult person and will not be likely to find anyone who wants to willingly work with me. I explained, in response, that I cannot and will not leave the hospital. So something has to work out.

She said that she would be happy to help me with my time-consuming patient education needs, in the future – an offer that I took her up on several weeks later.

-------------------
When I finally saw Dr. A, she came breezing into the exam room and immediately said that she understood there'd been some communication problems between me and my providers in the past. She said that cancer can be an arena where there are a lot of communication issues. I said yes, that some of them stemmed from their end, but that I came with my own set of issues that made it more complicated.

I proceeded to outline my own issues: I have a traumatic medical background from when I was hospitalized at age 5 with infectious hepatitis from which the doctors did not expect me to recover. While the doctors fifty years ago saved the patient, the experience left me with a lot of collateral psychological issues manifesting as PTSD and a pretty good case of white coat syndrome. I have managed those issues by avoiding the medical profession as much as possible, but now I can’t. One of the ways I cope, then, and try to feel as much in control as possible is by knowing as much as I can about what is happening to me. Thus, I ask lots of questions and need lots of information.

I emphasized that this is not meant to reflect as lack of trust on them as individuals. If she were Mother Theresa and Albert Einstein rolled up into one and sitting there with a white coat and a stethoscope, I would have the same reactions. So, I said, please don’t take my persistent questioning personally....It is not meant to be an attack on her knowledge or caring or integrity. It is just that it takes me a lot more info and a lot longer than most patients to find peace so that I can move forward.

I noticed that the whole time I was talking, she was leaning forward, toward me, with her legs spread out wide and her elbows resting on her knees. A very open, receptive posture. She seemed to understand. She never once intimated that she thought I should go elsewhere for my treatment. I appreciated that. And she said, after I was finished, that she was glad I had shared that with her, as it gave her a context for understanding me.

We then proceeded to have a perfectly normal clinical exam and conversation about treatment issues. She wants me to get rid of my port now, because of the danger of blood clots and danger of infection, when it's left. She feels that leaving it in is taking unnecessary risks. She encouraged me to decide quickly whether I wanted to stop taking oral bisphosphonates and move to IV Zometa.

Then we had a brief discussion about my surveillance plan. She pointed out that the problem with an aggressive surveillance plan that includes scans and blood work is that early discovery of recurrence (before clinical symptoms set in) leads to earlier treatment but not greater chance of survival, in the end. They have X drugs to use to combat metastatic breast cancer (MBC) that give Y amount of life, no matter whether you start them three months sooner (because of an early catch) or three months later (because of waiting for clinical symptoms).

So what you've done with early detection is deprive yourself of three months of "feeling good" in life, by catching the recurrence earlier and therefore no doubt treating it earlier. She said she will work with me on this, because aggressive surveillance reduces my anxiety about recurrence. But she recommends against it.

I pointed out, at that time, that I want aggressive treatment if I get a recurrence, because while I know it's not likely that we could return me to NED status, sometimes it does happen. And I will want to fight for that. She had no problems with that.

I took a friend with me to this momentous appointment: Nancy, who is a family nurse practitioner. She said, afterward, that she interpreted Dr. A’s opening statement about there having been communication problems as reflecting a bit of embarrassment at the behavior of her staff. I didn't read it like that...but it was nice that she did. :) It makes me feel like a worthwhile human being in a setting where I increasingly feel like a very bad person who nobody really likes or wants to have anything to do with. My self-esteem takes a beating at the cancer hospital.

So I consider it an achievement that it all went this well. My first appointment with Dr. C, last November, had her suggesting I consult with Dr. M. It was clear that she was uncomfortable at the thought of taking me on. Not so with Dr. A. I am anxious that I'm going to blow it sometime in the future. That anything this good probably won't last. But for now, for today, it's good.

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I have found a very good, concise statement of the situation when it comes to metastatic breast cancer. This is from an article written by a member of a listserv, who was very peeved at me when I insisted that I wanted to fight for NED if I get a recurrence. I got the link to this article, via the listserv, a couple of weeks after that. Now I see why she was peeved.

Longer life for women with MBC can only be obtained through continuous
treatments, each of which is bound to fail sooner or later. Typically, as the
disease progresses, new chemotherapy or hormonal or biological therapies
introduced to combat the cancer’s spread tend to work for increasingly shorter
periods of time, and with lowered effectiveness. As a result of these
treatments, women typically experience cumulative side effects and toxicities
over time, for which they must receive additional therapies. In addition, they
must cope with ongoing symptoms of the disease as it progresses. – “Lessons
Learned from the Metastatic Breast Cancer Community,” Seminars in Oncology
Nursing 26:3 (August, 2010): 196.

What is “known” by the medical community about metastatic breast cancer—which I am trying very hard not to get—is that it is not curable. You cannot be returned to NED status. It will kill you. To the author of this article, as no doubt to Dr. C, I am fighting against the inevitable, in wanting to fight for a long and healthy, disease-free life even if I get a recurrence.

It puts me in mind of one of my favorite songs, “Winning,” by Santana.

One day I was on the ground [if I become metastatic]
When I needed a hand
And it couldn’t be found [“There is no cure for Stage IV cancer” – Dr. H, on
October 19, 2009]
I was so far down
That I couldn’t get up [MBC is hard
to beat]
You know and
One day I was one of life’s losers [what you are
presumed to be by the medical establishment, if you have Stage IV cancer]
Even my friends were my accusers [those who are supposed to be helping me,
my doctors and nurses]
And in my head
Lost before I began [as I would be, to them, as I began to
fight MBC].

Unlike the medical community, however, the song goes on to offer hope.

I’ve loved this song for a long, long time, and never more than since I got cancer. Odd, don’t you think, for an ol’ Eeyore like me?

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This article also provides some stats, most of which I’ve read elsewhere:

30% of women who were diagnosed with early BC will go on to develop mets
No accurate stats are kept on the number of women living with MBC
Mets leads to death in all but a small percentage of women

That last is the one that surprises me. I’ve read it elsewhere. I asked Dr. S about this, and she said that the small percentage of women include those lost to the study (because they failed to follow through or moved away or something), those who died of unrelated causes, or those who had not yet died at the time the study was completed.

She even mentioned, which surprised me greatly, that all throughout human history there are reports of people with incurable diseases who completely recover, though no one knows by what mechanism this happens. She called them “miracles”––things we don’t yet understand scientifically, but that happen for reasons that she is sure we will one day understand.

------------------------------

I’ve read another article, this one by Joyce O’Shaughnessy, entitled “Extending Survival with Chemotherapy in Metastatic Breast Cancer” [The Oncologist, Vol 10 Supp (2005): 20-29]. She also cites some interesting stats:

MBC presents as the initial diagnosis in only 6% of patients

30% of
women diagnosed with early BC will go on to develop mets

She goes on to say the same thing that I found so objectionable in another article I read:

MBC remains essentially incurable, and current goals of therapy are to
ameliorate symptoms, delay disease progression, improve or at least maintain
quality of life, and prolong overall survival.

What surprised me to read in her article is the fact that as of only ten years ago, the idea of which chemos to offer to patients and in what combinations or what order was still highly up for grabs. I think it still is.

Doctors have some knowledge of what works for MBC, but not very much. What you can get for MBC is in part dependent on what you already had the first time around. Some drugs have lifetime limits, which I knew from the outset of my own treatment (thanks to the research and reading I did––not due to the “informed consent” that I was given!).

The kicker, for me personally, is that it has become obvious to me that the drugs I got for IBC were the top of the line – the best first-line drugs they have for aggressive breast cancers (which MBC is, too). So what does that leave for me to use, if I get a recurrence?!

Part of what will go into determining that is how long it is until I get a recurrence (if ever). The author says that if it’s less than 12 months, I will need to use other drugs. But if the recurrence comes later, after a couple of years, re-treatment with the drugs we used before may be possible.

That’s kind of like what Dr. L said to me about radiation therapy. If it has to be done again, if enough time has passed they can irradiate the same area again at least to some extent. If not enough time has passed, it could be impossibly dangerous to try to do so.

Time. Sweet time. I took it so much for granted, before I was diagnosed. Now it seems that so many things in my life come back to that one four-letter word.

The author says that in treating MBC, the assumption is that improvement in the overall response rate will translate into long-term survival gains, too. But apparently the evidence is only indirect for this. When it comes to the chemos, in various combinations, this appears not to be the case. In study after study that she describes, the chemo is said to sometimes produce improved responses, but in the long run not better overall survival.

So I asked Dr. S about this. She said that the major reason you can get an improved response but *not* improved survival is toxicity. The treatments are so toxic that they swamp the poor, beleaguered body, even as they are somewhat effective in killing the cancer, and so the patient dies anyway.

The article says that it’s only in the case of chemo plus the newer, targeted therapies that they have achieved any really significant improvements in overall survival.

I hope that I never get MBC, but if I do, I hope it’s far enough into the future that they have brought some of the best targeted therapies to market by then.

Time. Sweet time.

-------------------------------

An article by Jonathan Sleeman and Patricia S. Steeg is no more comforting (“Cancer metastasis as a therapeutic target” European Journal of Cancer 46 [2010]: 1177-1180).

They point out that the very process of trying to control tumor growth may, in itself, promote metastasis, but no one is quite sure why this is. Radiation may effect a “tumor bed” in such a way that, if it doesn’t eradicate all of the cancer, when the cancer comes back in that area, it tends to be more prone to metastasis and thus have a poorer prognosis. The same thing can happen with anti-angiogenesis therapy, like the much-debated drug Avastin.

The theory is that hypoxia or the up-regulation of tumor growth factors caused by the soi dissant treatments are the causes of the metastatic recurrence. But the truth is, no one really knows for sure. Before rational anti-mets therapies can be devised, they write, the processes of metastasis have to be understood.

The prevailing notion is that mets happen because of cumulative changes in the genes at a late stage in the tumor growth process. But that may not be true. Mets may be in the works even in the earlier stages of tumor formation. How so? (1) There is evidence that there is a kind of organization in tumors that involves cancer stem cells that are capable of creating new tumor in response to new environmental challenges (e.g., treatments) or environmental opportunities. (2) The spread of tumor cells throughout the body can begin very, very early in the tumor process, not only later in it. (3) The kinds of microenvironments that different organ systems offer to circulating tumor cells can play a role in the development of mets. (4) And tumor cells seem to remain dormant in various locations (e.g., liver, lungs, etc.) for a time and then become active, producing mets. The reasons for this are unknown.

The authors end their paper by pointing out that given the clinical importance of mets–– for the patient who has them and the physicians trying to treat them––a deplorably small amount of research money is devoted to understanding how mets happen. Only about 5% of the total spent on cancer research.

I find this appalling. To know that we women are given up on by the research machinery of our medical establishment at such a life-threatening time in our lives…. Apparently all the funding authorities believe their own line: that since “there is no cure for Stage IV cancer,” there’s no point trying, and research money is better spent trying to cure earlier stage cancer and hoping it doesn’t ever come back and become Stage IV.

Trouble is, if we don’t really know how Stage IV breast cancer comes to be, aren’t we just kind of shooting in the dark?

-----------------------

I find that the only way I can get psychologically comfortable with the idea that if I get mets, I will be treated for containment and not cure, is if I mentally accept that it’s OK if I die.

If I relax into being OK with eventually dying of the disease, rather than fighting to live without disease, then the thought of being treated only for containment until such point as containment will not work any longer…that’s OK.

If I keep the mindset that I want to fight to live and live well––free of disease––, then I find myself profoundly uncomfortable with the industry standard for treatment of Stage IV breast cancer.

But acceptance, for me, has to go even deeper. It is only in accepting the likelihood of my physical death, right now, here, today, that I can accept the vagaries and “whatevers” of modern cancer treatment without the anxieties that I struggled with in the last year. If I am prepared to die, I can more easily accept the many, many uncertainties of modern cancer treatment. I can be more at peace with the imperfection of it, the brutality of it, the uncertainty of it.

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Oddly enough, the “acceptance” issue is a double-edged sword. On the one hand, I feel that it is only by accepting the reality of my death that I can be at peace with modern cancer treatment––at any stage. And I am fighting against that acceptance. I don’t want to die, now or at any time in the foreseeable future.

On the other hand, when I got cancer and had to make treatment decisions very rapidly, I quickly set aside beliefs and avowals that I had made for a long time about “If I ever got cancer….” I swore I’d never allow myself to be poisoned (chemo), cut (surgery) or burned (radiation) in the name of treatment. But look at me now, a year later. I did all three.

“When your walk matches your talk, when intent and action are one, you have a
consistency in your life that is unshakable. You are grounded in a
principle-oriented life experience….The discipline to actually act on what is
important to you leads to personal freedom; you are no longer bound by the traps
of obsession, compulsion, and self-pity. This is a personal power at the highest
level, a strong and quiet inner assurance that is one of the rewards of the
wellness journey” (p. 154 of Cancer: 50 Essential Things to Do, by Greg
Anderson).

I can’t help feeling as if I folded like a cheap tent on my wellness journey. I accepted the evils of modern cancer treatment so readily. Not happily or willingly. Certainly out of a sense of fear. But it seemed to be the best that modern science––conventional or alternative––had to offer me. It still does, I’m sad to say.

Or was I just being flexible? My therapist says that “flexible” is another way of looking at it. I don’t know….

----------------------

Meanwhile, as I ponder these things in my daily life, the Universe is at it again.

I was playing a game of Cross Craze and mulling over the fact that the only way I can seem to be more or less at peace with cancer treatment and whatever it may bring is if I accept that I am dying––or might very well die. Not due to the cancer, but due to the treatments and their lack of effectual deployment (whether because they are not capable of curing me, or because they are ineffectively used in the effort to cure me). Or due to frank treatment mistakes that my care providers might make.

And as I was pondering these thoughts, I was able to make a play that used all of my tiles *and* hit a triple word score place on the board, for a total of 89 points for the play.

What was the word that I created, under these salubrious conditions? “Surrender.”

-----------------------------

In the midst of these ruminations, I have to laugh at myself. Two incidents have made me realize how very much I’ve adjusted to having (had) cancer and undergoing modern cancer treatment. Both of these things were things that totally and completely freaked me out, when I had just been diagnosed and was facing the road ahead.

The first was getting a port put in. When I learned that I needed to have one and what it did (dumping toxic chemicals straight into my heart), I freaked out. I mean a raving, ranting freak-out. And this went on for several days, at first, and intermittently thereafter. Today, I am so adjusted to having a port and what it means that I am reluctant to have it taken out, even though I don’t need it any more. Ironic, no?

The second was going bald because of my chemo. I remember very clearly the day that I walked into my friend Alice’s office, sobbing and terribly depressed because I had just learned how soon I was likely to lose my hair and because I had not made any plans for what to do when that happened –– scarves for my head, learning how to tie them, a wig, hats…whatever. I felt so unprepared for what was in my immediate future, and so embarrassed at knowing that I was going to wear the mark of the cancer patient––the bald head. But recently I was describing the risks and costs of doing chemo, and I almost forgot to mention losing your hair as one of the costs! How quickly we forget!

I find it very funny how I’m so adjusted to these things now, but found them so terribly, terribly upsetting at the outset. I guess that when I am faced with massively negative events like this, in which one must voluntarily do something that one doesn’t *want* to have to voluntarily do…kicking and screaming is just my way!

-----------------------

Massively negative events?

Yes. Having cancer and having to undergo modern cancer treatment ranks right up there as a massively negative event. There is no doubt about it. But this week I have also realized something else about modern cancer treatment that surprises me.

An acquaintance of mine wrote to ask if I had any advice to offer about being on chemo, since I’ve been so open with the details of my cancer journey. Her brother had just been diagnosed with colon cancer and was going to be starting chemo in a few days, and she wanted to give him all the info and support that she could.

Well, you know me. I wrote back and offered her all of the nuggets of wisdom that I could come up with. What surprised me was how many positive associations I have with being in chemo.

Yes. Chemo is nasty. Chemo is evil. Chemo is poison. Chemo is toxic. You want to avoid chemo if you can.

But the process of getting chemo, the people who care for you, the ways that they care for you…. There are warm, fuzzy memories in that. Even in some of the memories of Betsy and Susan, my first two oncology nurses, neither of whom will even acknowledge my presence, now, when I’m in the cancer hospital. There were quite a number of bright and warm and caring moments with them, too.

I felt nurtured, cared for, watched over. Even if I had huge problems with their methods of caring (chemo, radiation, surgery…), I still felt cared for by them, as individuals. I look back on their care as nurturing. And I treasure it. Odd, no?

It’s kinda the same with the hospital. They have done unspeakable things to me there, in the name of trying to rid me of this cancer. And there have been what seem like a never-ending series of problems with aspects of their care––what they have done, what they have failed to do, etc. The procedural and interpersonal issues that have arisen have eaten away at my soul, my confidence and, here lately, even my will to live.

And yet, there was also caring there. I have a number of positive memories and positive feelings about the place, even as I move away from feeling “at home” there, the further along I get in my survivorship.

I find this all very curious.

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And so, life rolls on. In the last year, I have discovered new depths to old relationships––depths I would never have imagined. At the same time, some of the relationships that I had counted as my most important have shown themselves for what they were.

One set of relationships that I’m appreciating in new ways are the ones with my kids (two biological, one in-law). We don’t have to spend a lot of time together, but when we do meet for supper or to work on math problems or cull library books from my collection, I find myself genuinely enjoying their company in ways that are new to me. I like this. Those days are always golden days. Good days.

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My buying habits have changed, lately. They include boxes of disposable diapers, books for very, very young toddlers, soft toys suitable for babies who like to mouth things, CDs of children’s songs, rattles, blankets…..

But I’ve been told that I can’t say anything yet about why I am buying such things.

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I had an insight, recently: Life is not *supposed* to work. It’s supposed to be a struggle.

I don’t know why this is. I think it’s a design flaw in the Universe. I plan to ask God about it, one day. S/He’s got some ‘splainin’ to do.

Meanwhile, one wants with every fiber of one’s being to make life better for the next generation. To do those things that will make *their* lives work, with a minimum of struggle and a maximum of joy.

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In early August, I was involved in a little fender bender in the parking lot of the Whole Foods store in Chapel Hill. Some 20-year-old chickie-poo in her mama’s big ol’ Jeep was making a right turn while looking to the left. She didn’t see me stopped at the corner of the lane she was turning into, and she took her half of the road out of the middle. That was not a good choice.

The impact knocked my front bumper off, crushed my turn signal on the left, and crushed my windshield washer fluid bottle. She took full responsibility for the accident, but it wasn’t very satisfying. First, because it held all the sincerity of someone who has just farted in public. The gravity of the situation seemed just that great, to her. Second, because while my car was undriveable and had to be towed away (we thought that the fluid might be radiator fluid, not washer fluid), completely scuttling my carefully choreographed plans for the afternoon, within an hour she had driven away with the little ding in the Jeep’s front fender, on about her day’s activities. Third, that little encounter caused me hours and hours of time on the phone over the next four weeks with insurance adjusters, body shops, etc., as I tried to get the details of repairing my car ironed out.

Would you believe they totaled my car over a front fender and washer reservoir? Yup. So now I’m driving on a salvage title. Argh!!!!!

What was most telling, to me, was how utterly emotionally swamped I felt after the accident. I couldn’t think straight to figure out what to do next. Call my shrink to cancel my appointment with her that was supposed to take place in 15 minutes? Save my dark chocolate covered almonds from melting? Call my mechanic to look at my car and tell me whether it is driveable, or just have it towed to some nearby body shop? Get a rental car? And if so, how? Who would pay for it late in the day on a Friday afternoon––because I couldn’t? Call Nancy and Tanya to tell them that I was going to have to miss our joint appointment with our nutritionist, which I’d been looking forward to for a couple of weeks?

It’s chemo brain, and I definitely have it. Short-term memory is not as good as it once was. My ability to write and edit requires more time and care, now, because I miss things more easily. Executive function (the ability to assess situations, plan, organize and execute actions) is fuzzy. I was just emotionally overwhelmed by this little fender bender.

Several hours after the accident, as I was driving home, I had to tell myself to breathe deeply because it was all handled, now. Everything was taken care of. There was nothing more I could do at that moment. It was time to relax. It could have been so much worse. Things would be OK.

But the stress tells on me. Whenever I’ve been emotionally stressed beyond the normal, my hand-foot syndrome starts to kick in. That night, the palms of my hands and the soles of my feet were burning and tingling like crazy.

-----------------------

The good news is that the tow truck driver hit on me! Granted, I am now down to about 65 lbs. less than I was a year ago, so I don’t look too bad. And I was wearing a fetching tank top with drapes of fabric in a V-neckline that only slightly revealed my half-cleavage (the other half being rather sunken in and not much of a cleavage at all nowadays!), but let’s be honest: I wasn’t that attractive. I think he’s just a horn-dog who flirts with all the female customers. Still, it was nice that he didn’t take one look at my chemo-curl hair, half a cleavage and lymph-sleeved arm and turn away in disgust!

-----------------------

I also have to give a shout-out to my insurance agent and her staff, who were was very kind and gentle with me (rattled as I was) through multiple phone calls that afternoon to get everything taken care of post-accident. Without divulging too much, I must send a special thanks to her because she stepped in to help me in a personal way, above and beyond the call of duty for an insurance agent.

For many years, I’ve thought very highly of Pam, and this was another incident confirming my good judgment. If anyone in the Triangle area of Chapel Hill wants an excellent agent, I can unreservedly recommend her. Give me a call. I’ll hook you up.

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In the midst of my ruminations on metastatic breast cancer and dying and coping with auto accidents, I’ve been having some really active dreams with surprisingly positive affect associated with them. In one of these dreams, I was always embedded in a group or a couple of people—I was never alone. And the things that were happening were upbeat, not tense or angry or anything. A lot of what was going on seemed to be set in sit-com types of settings. I can’t remember most of the details—only the flavor. And that’s what it was. Upbeat. Sitcom-ish.

The one detail I can remember is seeing the store fronts and signs of businesses along the set of the small-town main street where the sitcom was supposed to take place. The name of the town appears to have been “You can do it!” because all of the stores there were called the “You can do it!” This or That. The “You Can Do It!” Dry Cleaners. Or the “You Can Do It!” Grocery. One of the stores had a cartoon image of one of the Beatles jumping out of the flat plane of the window, with “You can do it!” written over the image. As I surveyed this row of storefronts, I thought how much fun the set designers must have had in creating it.

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I also had a series of run-ins with the number 4 several weeks ago. It seemed like I would be driving along, stewing about one of my issues about cancer, cancer treatment, recovery, PTSD, white coat syndrome, etc., and I’d look up and see these series of 4’s in front of me. An address on the side of a mailbox was “4444” or the prefix to a real estate agent’s phone number was “444” or I’d glance at the clock to see what kind of travel time I was making, and the time would be “4:44.” Or the change from a purchase would be “4.44.”

It found it rather perplexing. “OK,” I said to Whoever was sending me these 4s. “I get it. Fours. So what’s the message? What’s the numerical meaning of the number 4? Does it have some great esoteric meaning that I should be getting? What’s going on?”

And then one day, as I was running that question through my head, I got it.

“May the 4’s be with you!”

And the Universe gave a big belly-laugh. Sometimes God has a very droll sense of humor.

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I’ve been noticing, as I make my way through the survivorship experience, that cancer is being culturally shaped into a kind of “peak” experience––a spiritual experience. This is what cancer patients are “supposed” to feel and experience, as cancer patients. That cancer is a “gift”––some kind of special calling from God to a higher life based in denial (or in our case, real existential threat and privation). Cancer is to modern Protestant America (supposedly) what asceticism was to the founders of Christianity: a doorway to a nobler, more high-minded existence.

I’m sure I’ll have more ruminations on this. Cancer as gift? Cancer as the best thing that ever happened to me? I sincerely doubt it!

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After my last blog entry, a friend whose husband is a theologian wrote to tell me that Terry said the problem of theodicy––how a good God can allow evil––is a false problem. I couldn’t follow the reasoning. But it did spark my thinking in a different direction.

The premise of the problem of theodicy is that God is all good and all powerful and all knowing. These things being so, why do bad things happen? People have struggled to answer this question for millennia. It’s probably at the heart of all religious systems, all religious activities. We look at the world around us and we see evil––bad things. Things that we would rather not have happen. Either evil that occurs “just because,” like tsunamis or tornadoes or grizzly bear attacks. Or evil that was conjured in the hearts of our fellow human beings.

So why? It just doesn’t add up. If God is who we think God is, why is this world like this? Humanity may have screwed things up in the Garden of Eden (to use the Christian understanding of the creation myth), but that doesn’t reasonably explain tornadoes, for instance. So…? What gives?

Then it hit me. If you can’t get A + B to = C, then maybe it’s because the foundational premises (A or B) are wrong. What if God is not all powerful or all good or all knowing? What if God is doing the best that God can? What if God just needs a break, from our expectations that things should be otherwise, because He/She is doing the best He/She can?

What if the creative force of the Universe is pretty much like most human beings, writ larger? On the whole, decent sorts. But not perfectly knowledgeable or perfectly good or perfectly powerful. But still, on the whole, decent sorts who you wouldn’t mind having for your neighbors.

When you are trying your best to do a good job, and a situation seems to confront you with your own failure to do that good job, how do you feel? Are you likely to blow up? Loose your cool? Are you likely to say, “Hey, Buddy! You think you can do it better? You weren’t here when the whole d*mned project was thought up, and you weren’t here to set it all in motion and work on the implementation of the plan. So if you want to go criticizing my performance, just shut your yap! I’m doing the best that I can! I’d like to see you do better!”

That, to me, is how God reacts in the Book of Job. I could never understand that book. Until now. Understanding God’s reaction, there, as an outburst from one very frustrated Being makes perfect sense. And the moral of the story? Give God a break. He/She’s doing the best she/he can!

I know this is heresy, but the older I get, the less committed I am to forbidding myself from thinking certain thoughts. Heretical ones most especially.

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As I feel this melting in my heart for God, for the effort that the Prime Consciousness of the Universe has expended in trying to build this place and keep it running, and as I am feeling a bit more forgiving of his mistakes and shortfalls, I find myself asking whether this attitude is not the fairest one to take with my doctors and nurses, as well. Have I given them enough of a break? Have I been fair enough with them? They are, after all, only human. Even if their mistakes may endanger my life or shorten it…they are, after all, only human….

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I read Irvin D. Yalom’s Staring at the Sun: Overcoming the Terror of Death. On page 103 he talks about Nietzche’s thought experiment about eternal return, asking, “Would you be willing to live this past year again and again for all eternity?”

The very thought makes me want to curl up into a ball.

He recognizes that maybe 90% of everything that happens to us is a result of forces outside ourselves over which we have no real control. But he insists that it’s worthwhile to look at that 10% of what happens to us over which we do have some control. “What regrets do you have about your actions the last twelve months? What might you have done differently?”

Those are the questions I’ve begun asking myself, in the last couple of months. I don’t have any firm answers, yet.

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I just finished Ira Byock’s Dying Well: Peace and Possibilities at the End of Life. In the appendix, he covers how to talk to young children about death––especially their own. He said that for most children under the age of seven, the finality of death is incomprehensible. How they tend to understand death is in terms of be separated from their parents. Separation.

That rang an immediate bell with me. Because I think that was one of the big emotional issues I had when I was hospitalized fifty years ago. I was plucked up from my home, and plopped down in a strange environment, separated from my parents, and subjected repeatedly to things that hurt me.

I’ve been thinking that I haven’t been dealing with the whole “death” thing in the last year, during my treatments, because I have been so focused on trying to live. But maybe that’s wrong. Maybe I’ve been dealing with my possible death for the last year, after all? Dealing with it as I would have experienced the encounter with death––in the same terms––as a five-year-old.

I couldn’t have understood that I was dying, back then 50 years ago. But I did understand that I was being forcibly separated from my parents and not allowed to go home. And for a five-year-old, that’s pretty much what “death” is. A separation.

Maybe, in my five-year-old way, I was in fact confronting death, back then. And it scared me. And the people who seemed to be making it happen (the doctors) scared me and made me angry. I couldn’t trust them, because they were the agents that were causing what, in my young mind, pretty much amounted to death: separation from my parents.

Not to mention how they just hurt me all the time. Byock also mentions that no child should have to undergo procedures without sedation, nowadays, like they used to do with children all too often, just restraining them instead of sedating them. Again, that rang a bell for me.

When I was diagnosed with cancer last year, my adult mind knew right away that I was confronting death. And maybe I picked right up again where I had left off with the death-battle, as I had known it 50 years earlier. Same battle. Same emotions. Same fears. Same anger. Same anxiety. Same death.

No wonder treatment has been so difficult for me to deal with.

The struggle has been made more difficult because of the “alternative health” rhetoric. This rhetoric is something that I have been tuned into for decades, on my own. It has also been shared with me very liberally by some well-meaning friends both for a long, long time before my diagnosis and in floods of messages sent to me after it.

This rhetoric that says that modern cancer treatment is more about profits for the drug companies than it is about restoring health (my cancer mentor, Ashley, expressed these sentiments to me, as well), and that there are known cancer cures out there that are being suppressed by the Evil Cancer Establishment. That the “cures” the Cancer Establishment offers the average cancer patient lead to death more often than to life, in the end. That they are thus not to be trusted. In fact, they are to be avoided in favor of [insert your favorite alternative remedy name, here]––and we know this alternative remedy works only because it says so on this guy’s website and untraceable people have said it worked for them.

So….

Getting cancer = dancing with death.

Getting modern cancer treatment = dancing with death.

Relying on modern alternative cancer treatment = dancing with death.

Cancer treatment, and the many issues surrounding it that I have struggled with in this last year, has been a proxy for death. The two are linked, in my mind. And have been for decades.

Doctors, as the purveyors of these treatments/death, are therefore difficult individuals to trust. I want to. I want to just lie back and be sick when I need to be sick and not worry about what they are doing to me. But I can’t. Because to me, they are not just purveyors of treatments/cures, they are the ones who bring death into the room with them, every time I have to interact with them like this. Not to mention the torment that they inflict, in the name of their treatments.

I’m working so hard on trying to disentangle all of this, in my heart and my soul, where these things live.

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I have read a book about a doctor’s first year of residency––his internship. So far he has talked twice about situations in which his role in possibly causing a patient’s death due to his lack of attentiveness or inexperience comes up. This does not reassure me.

He also has mentioned how quickly the interns start to do what the residents and attendings do––speak disparagingly of patients. This is what I am certain my medical providers do with regard to me. They don’t like me. I am crushed, and I’m sure I’ve brought this on myself by being such a demanding patient. But I don’t know any other way to react toward them. What this author writes only confirms me in my feelings of distrust and caution toward them.

I seem to be trapped in a situation where I need their expertise and their ability to prescribe for me, but I don’t feel I can totally trust them to do the right thing all the time, either. So I can’t relax with them. What if their next mistake is on me? And yet my not relaxing causes them to hate me more. It’s a vicious circle…and I don’t know how to end it.

My therapist says that I am trying to make them more three-dimensional characters, as if that were a good thing. But I’m not so sure. Maybe I always had a picture of them as three-dimensional characters: sometimes inexperienced and always flawed human beings. And it is into the hands of these flawed human beings that I am expected to put myself?!!! That’s been my issue from the git-go, and I don’t see it resolving now.

I have a lump in my throat and tears welling up in my eyes. Is there no way out of this problem? And what happens if I become Stage IV? What then? I truly am doomed, then. As Ashley said when she found out that her ovarian cancer had come back. I am doomed not just to dying of cancer, but to having to have a close relationship with these people whom I cannot trust.

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One of my former students, when I was teaching at the Divinity School, wrote this on Facebook:

Yea, when this flesh and heart shall fail,
and mortal life shall cease,
I shall possess within the veil,
a life of joy and peace.

I couldn’t restrain myself. I responded:

What does it mean
When it always seems
That joy and peace are only dreams
And to be ours not now, today,
But only when Death's had his way?

There was no reply.

I seem to have that effect on a lot of people.

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Yet it is not all gloom. This was the signature line of a woman on the BC Mets listserv. I like it:

At times our own light goes out and is rekindled by a spark from another person.
Each of us has cause to think with deep gratitude of those who have lighted the
flame within us. –– Albert Schweitzer

In their way, my professional caregivers have certainly lighted the flame within me, in the past year. Just as important are my many friends and family members who have helped to light my flame, over and over again, last year, as it has flickered and wavered and threatened to go out––or gone out in actual fact. All of you, who have cared enough about me to read this blog, to send me emails, cards and prayers, or to share leave time with me at work…you are very much appreciated.

July 16, 2010 Update –– Brenda, the Bad-Ass Fighter

2010-07-16T06:37:00.000-07:00

Well, the good times just keep on rolling in.

Two hours before my scheduled appointment with Dr. A, my proposed new oncologist, on July 1st, the scheduler at the clinic called to tell me that the doctor could not see me and had told her to re-schedule me with my old oncologist, Dr. C.

Two hours before my appointment!

I protested two or three times that I was supposed to see Dr. A, not Dr. C. That Dr. C had made it clear to me that she doesn’t want to be my oncologist, so I need to see Dr. A. The scheduler replied twice that she was just doing what the doctor told her to do and couldn't do anything else.

So I accepted the appointment with Dr. C (set for July 27th), uncertain as to its purpose. I thought maybe the two of them had talked and decided that I had to remain with Dr. C, and a discussion about this would be the point of the appointment.

Denise, my nurse navigator, contacted me via email a few minutes later to tell me that when I came in to see Dr. A that day, she'd give me copies of my latest lab test results.

I responded, passionately, that there would be no visit, because Dr. A had canceled it. I asked what was going on? I was pretty upset.

Why did Dr. A refuse to see me at the same time that Dr. C is telling me she doesn't want to be my oncologist any more, I asked her. I cited specific things Dr. C has said to me over the last 8 months that have indicated she was not thrilled to be asked to take over my care when I stopped working with Dr. H. I said that I had hoped with time, I could win her over, but apparently I had been unsuccessful in that.

I explained that I am not leaving the hospital where I get my care, giving several reasons for this. One reason is financial –– trying to keep my medical bills consolidated in one place so that I don’t have too many people wanting a piece of me every month.

Another reason is because in technical terms, the care I have received there is very, very good.

And one really big reason is the fact that part of the difficulty I have had has been because of my own baggage, and I would take that anywhere, so why leave?

Denise forwarded my email to Dr. C, who read it and tried to call me late on Wednesday, July 7th. I didn't catch the call, but when I picked it up later from voice mail she said that neither she nor Dr. A had known about the schedule change until after the fact. She said that a new appointment was being set for me for August 5th with Dr. A, who would be happy to see me "then" –– making me wonder whether this new appointment might just be a one-time appointment. (The appointment has been re-set for July 29th, now.) Finally, she said that she wanted to talk to me "about all of this" and said that she'd call back the next day.

I contacted Denise to let her know that there was one period on the following day when I could not take the call from Dr. C, due to another medical appointment, but saying that all of the rest of the time, I was at her disposal.

As I thought of everything, though, I got mad about the appointment change. I had worked hard on preparing for this appointment, planning what I wanted to say, how I wanted to say it –– in general how to manage this new interaction in a way that I hoped would get us off to a good start. (Don’t know why. I did the same thing for my first interaction with Dr. C, but it didn’t seem to have done me any good. At that first meeting she suggested I might like to consult with Dr. M, and at our second meeting a couple of weeks later, after I’d seen Dr. M, she asked me expectantly if I was going to see him from now on.)

Having the rug pulled out from under me like that really sent me into a tailspin. I was alternately depressed at my abandonment and then angry. So I sat down and wrote a separate message to Denise saying that what I had been told about why the appointment was canceled didn’t add up. The scheduler told me one thing; Dr. C, in her voice mail message, told me something else. So who, I asked, has the authority to cancel an appointment for a doctor two hours before it's supposed to happen and decide that the patient should *not* be re-scheduled with that doctor, but should be re-scheduled with the old doctor?

As of this writing, I have not heard from Dr. C nor do I have an answer to the question of who had the authority of a doctor to change the schedule at the last minute, refuse to allow me access to Dr. A, and send me back to Dr. C. There is just dead silence.

Frankly, the whole episode made me feel very bad. I couldn't help but think that if I'd rejected treatment a year ago, this would all be just about over by now. I would be dead or near death. And I wouldn't have to try to navigate the Cancer System any more. It would be almost over. I just wanted to curl up into a little ball and die.

These thoughts made me very sad, but there was also a kind of peace in them. Is this going to be the only way I can get peace in dealing with the medical community in Cancer Land? What a horrible, horrible thought….

I shared this whole story with someone on the BC Mets listserv. Her response made me feel like not-a-loser, not a “bad patient” and an unworthy human being. It has helped a lot to lift my spirits. She said:

Girl, we'd all be dead if we didn't go for treatment. I'm five years this month, and I really, REALLY never felt better in my life. DO NOT let these people break you. You have so much spirit, you just need to rely on people who keep telling you that you are in charge of your life. They are in the business of helping you do that. And if they're not helping, they're in your way.

Send me your address. I want to send you a book. I'm a badass, too, and that's why I'm still here. I wrote the book for fellow-badasses, and to help people who want to be more active and vocal, find their own voice. Not my voice, theirs. The only thing that can really hurt you is The Bastard trying to kill you, and you're doing your job by fighting it. You should NOT have to fight the system, which includes
doctors, and that's what's happening to you. It's not you. It's them. I had two awful incidents at XXXX, I'll tell you about them some day when we both have more leisure time. But before they could dump me, I attacked them. I would never go back there –– there really is no need anyway, unless I have to have my boobs replaced, and there are other reconstructive surgeons who can do that just as well –– but the point is, it's my choice.
They can try to make you uncomfortable so you'll go someplace else, but you hold an ace. You can see a lawyer. Nothing puts the fear of God into the medical profession the way the threat of legal action does, even if you don't follow through. I come from a family of lawyers (probably one of the reasons I love a good fight) and if I was one, the way they are jerking you around and wasting your precious time, would make my mouth water. Look for a lawyer that specializes in malpractice. Try not to go to legal aide, because those people never have enough clout to make doctors nervous. You need to scare these guys, not the other way around. And a consultation never costs anything, if the lawyer is legit. Even if all a lawyer does is write a letter saying they're been retained and are prepared to defend your interests, I promise you, you will see a big difference in everyone's attitude.

We are NOT survivors. Survivors are victims of something. We are prevailers. We triumph over this
stuff. I know a warrior when I hear one, and that's you, Bay-Bay. Anger has been my greatest asset since this episode in my life began. If you channel it into fighting these paper-pushers, you will always prevail.

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This whole thing of needing to change oncologists once again arose because of my discomfort with the standard of care for Stage IV BC patients and my having the gonads to ask Dr. C for reassurance that she will give me something a bit more aggressive than the standards call for if I ever get a recurrence. (And let’s face it, with IBC, I am very likely to get a recurrence someday, thus becoming Stage IV.)

Call me crazy, but I find it very disturbing to know that my oncologist is being advised –– and totally buys the advice –– not to try to treat me to bring me back into complete remission (= No Evidence of Disease; = “cured”) if/when that happens, but to treat me just to try to “contain” the cancer and keep it from progressing any further for as long as possible. (See the quote from the cancer journal that I included in my blog last time, if you want proof that this really is the standard of care in the year 2010 for women with breast cancer metastases.) When containment is no longer possible and we’ve exhausted all possible treatments, then I’ll be referred to hospice for care until I die, which at that point will probably be a matter of a couple of months.

I’ve decided not to be beaten down (though it often requires me to pick my battered ego and lacerated heart up off the ground and dust them off), but to move forward on this issue calmly, assertively and pro-actively. I have created my own health care treatment directives that state what my general treatment priorities will be if should I be diagnosed with a terminal-stage illness. It starts by stating that I want aggressive treatment to try to return me to NED status, but if we try that and cannot achieve it, then I want to try for long-term containment of the disease. If we cannot achieve containment, or when it fails (as it sooner or later will), I want to be treated for quality of life rather than length of life. If I reach the point where I can no longer evaluate and make treatment decisions on my own, my Health Care Power of Attorney should be followed.

Of course, this means working on my Health Care Power of Attorney and my Living Will, and I have begun doing this. I was first urged to think about such things back late last fall, before my mastectomy. The good folks in anesthesiology gave me the forms to fill out, in case I wanted to do that before I went under the knife. But I couldn’t think about it, then. The thought that I could die…I just wasn’t able to think about dying. I was too busy fighting to live!

Now, however, I feel like I need to do this as a part of my survivorship activities. I have begun facing my own possible/likely death from this (sooner or later) in ways that I just couldn’t do when I was in active treatment and the prospect was staring me in the face.

I plan to make copies of my advance treatment directives, my health care power of attorney, and my living will, and give copies to each of my doctors as I meet with one or the other of them at three-month intervals over the next year or two. I will tell them what I’m handing them, simply and straightforwardly: a general description of my treatment objectives, my health care POA, and my living will. I will say that assuming they don’t have any comments or questions about these documents, I would like them to be entered into my chart.

In this way, I will assertively but without fanfare make a statement about my wishes should I become Stage IV. We’ll see if my doctors get so freaked out when I present my request in this form, rather than asking them personally, as I did with Dr. C at our ill-fated meeting in late June.

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I’ve been doing a bit of reading about hope, courtesy of a friend of mine (Nancy) who sent me Jerome Groopman’s book The Anatomy of Hope: How People Prevail in the Face of Illness. There are some really good insights in there that have reinforced my thinking about how I want to be treated if I get Stage IV disease.

For instance, he says: “Hope can arrive only when you recognize that there are real options and that you have genuine choices. Hope can flourish only when you believe that what you do can make a difference, that your actions can bring a future different from the present. To have hope, then, is to acquire a belief in your ability to have some control over your circumstances. You are no longer entirely at the mercy of forces outside yourself” (p. 26).

When I asked Dr. C to treat me to try to achieve remission again, if I become Stage IV, rather than to try to keep the cancer contained (the standard of care for Stage IV BC), this kind of hope was exactly what I was asking her to help me have. I was seeking to not give in to the outside forces of cancer.

Turns out, I am having to not give in to the Medical Establishment, as well, with their preference to try to reach a compromise with the cancer rather than to route it. Pity. I had thought that I’d have them on my side, on the same page with me, and we could fight the cancer shoulder-to-shoulder. I keep thinking that there must be some very, very logical reason for their taking this position, but so far I haven’t found one that makes any sense to me.

In another story from the book, Groopman tells about George, a pathologist who got a deadly form of cancer. Despite the advice of some of his physicians, George insisted on very, very aggressive treatment. He knew that the standard approach to his kind and stage of cancer said that treatment would only cause unnecessary suffering and throw away society’s money (his own and the insurance company’s) on “a doomed person.” But he insisted upon it, anyway.

Groopman observes, “His was a libertarian mind-set, one that placed the individual squarely as the ultimate arbiter of his fate. It represented a certain form of hope––the hope to be strong enough not to yield, to have the determination and the fortitude to fight, despite knowing that there was little chance of survival….Surrender would be on George’s terms” (p. 75). I annotated the margin of his passage: “Amen!”

As it turned out, George was alive and doing very well 13 years later––13 years after he was supposed, by the Medical Establishment, to have died because his cancer could not be brought into remission. As Groopman says, “Even the most aggressive and gruesome cancers can sometimes be stayed. They rarely are, and what we have to throw at them is so crude and so toxic. But sometimes that primitive therapy works” (p. 77).

I gave this quote, in written form, to Dr. C in June when we had our ill-fated discussion. She proudly avers herself to be an “evidence-based” physician who works strictly on the basis of what science shows, though, and the quote appears not to have moved her toward having more sympathy with my desired approach. She is among those who would have advised George not to engage in the aggressive course of treatment that he insisted upon, because the evidence indicated that he was not going to be able to achieve remission.

“Those who understand their condition and then choose George’s path are not mad…as I once believed,” writes Groopman. “I have come to appreciate that the decision is not as simple as that. My place is to provide choice and understanding. To hope under the most extreme circumstances is an act of defiance that, as George explained, permits a person to live his life on his own terms. It is part of the human spirit to endure and give a miracle a chance to happen” (p. 81).

I am beginning to fear that at my hospital, there is so much “evidence-based” medicine being practiced that no room is allowed for miracles to happen.

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Groopman wrote something else that I have found very sad. “There are some patients whom a doctor grows to love. It is a unique type of love, distinct from any other type of love the doctor has experienced before. It moves outside the bounds of the usual doctor-patient relationship; feelings and thoughts are no longer strictly professional and are shared among true friends” (p. 132).

I long for such a relationship, but fear I’ll never be able to achieve it.

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Groopman finishes his book with an exploration of the scientific basis for mind-body medicine and hope. He points out that while the mind does affect the body, it is equally true that the body affects the mind––and may affect a given individual’s ability to have hope.

“Kindling and sustaining hope depend not only on images that may be conjured in the mind but also on how those images are brought into focus or blurred by the ongoing input of nerves from organs and tissues to the brain,” he writes (p. 181).

In that light, the work I’ve been doing with biofeedback through the Get Real and Heel breast cancer after-care program has been interesting. I did my interim assessment yesterday and found that I am now able to achieve a more integrated, coherent physical state, whether I’m just sitting and aimlessly thinking about things or I’m concentrating on stressful situations––like my current problems with the two oncologists. This means that the chemicals that are flooding my body at any given time tend to be less given over to stress hormones, which facilitate the growth of cancer cells, and more given over to “chill” hormones, which are inimical to cancer.

Three months ago, doing this assessment and thinking about a stressful situation sent me tumbling over an emotional edge that it took weeks to recover from. Today, not so much. The difference appears to be in learning a few tools to help me break the negative feedback loop that I acquired when I was hospitalized 50 years ago.

It seems that stressful life events (particularly longer-term events, like a six-week hospitalization for a 5-year-old might be) can cause a rise in cortisol levels, which with time causes the hippocampus region of the brain to shrink. It dies, a little bit, from the sheer exhaustion of being bathed in stress hormones all the time. And this can have repercussions on a person’s life, down the road.

The hippocampus is what helps us link objects and events around us in the present with our past experiences and use those experiences as a framework for dealing with current situations. With a hippocampus shrunk by very stressful past events, a person can have trouble recalling memories that help them generate positive emotions about their current situation. They will tend to be less emotionally resilient, as a result, and more prone to depression and hopelessness.

There are also genetic factors that come into play, causing some physical systems to be able to dampen fear responses quickly, whereas other physical systems operating under a different genetic configuration are less able to do so. Which causes the system to be bathed for longer periods of time in the very stress chemicals that wind up affecting the hippocampus and memory….

This means that sometimes one’s basic physiology makes it harder for them to be a “Tigger” rather than an “Eyore.” If you add a stressful life event to a physiology that is prone to holding onto neurological assaults rather than letting them go…you have a perfect prescription for a person with low levels of emotional resilience who will be more likely to develop long-term stress reactions to major life events.

The key is in learning how to let go. How to change one’s patterning. To break the cycle. I think that the biofeedback work I’ve been doing, combined with my fledgling attempts to process my old post-traumatic stress via EMDR (Eye Movement Desensitization and Retraining) may be having some positive results. At least, the assessment sure seems to indicate this.

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Groopman’s book ends with his reflections on hope, after working as an oncologist for several decades. “Each disease is uncertain in its outcome,” he writes, “and within that uncertainty we find real hope, because a tumor has not always read the textbook, and a treatment can have an unexpectedly dramatic impact. This is the great paradox of true hope: Because nothing is absolutely determined, there is not only reason to fear but also reason to hope. And so we must find ways to bridle fear and give greater rein to hope….The uncertainty of science also brings hope” (p. 210-211).

I wonder how I could get Dr. C to read this.

I wonder if it would even matter?

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I am finding that whenever I try to discuss the whole “standard of care” and aggressive treatment for Stage IV breast cancer thing with other people, I very often get told not to “worry” about it. To forget about the “what ifs” of my future and just enjoy the life and health I have today. And if I do get a recurrence, I can deal with it then. (Not everyone has this reaction, but a surprising number do.)

What others call “worry,” I call thinking ahead. Rational planning. I’ve been reading about survival, again. The current book, The Survivors’ Club by Ben Sherwood, says that while there’s a lot you can’t always control, there’s quite a bit that you can (p. 2). In particular, “Experts agree that planning and preparation are the twin pillars of survival” (p. 304). Thinking through and preparing a general treatment plan for myself feels like the first step in preparing for my survival if/when I become Stage IV.

I think, when I have shared these ruminations on my death with some of you, that sometimes you have been horrified to hear me talking this way. About dying, when I have just been “cured” of this nasty cancer I had. I’ve had a hard time figuring out why some of you have reacted this way –– urging me not to confront my mortality. Apparently thinking that any discussion of it is bad luck. (Even Dr. C doesn’t like it when I “bring this subject into the room.”) But then it finally dawned on me.

Maybe it’s just a reflection of the tendency we all have to not want to talk about and envision death.

Or maybe it’s because, for all of you out there, you’ve spent the last year being perfectly able to envision my death and hoping I’d avoid it! So for you, the “death work” you’ve done is quite enough, and you’re pleased to see me doing well, and you’re ready to move on in how you think about me. You don’t want to hear no more of this morbid death stuff!

For me, though, as I said, I haven’t been doing much death work during the last year. I’ve been fighting so hard to stay alive, that I haven’t given much more than a frightened glance over my shoulder at Death.

In the months since I began my survivorship journey, however, I’ve been forced to think about it more straightforwardly. It’s a little easier to do now that it’s not staring me immediately in the face. A little.

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Sherwood, like Groopman, believes that everyone in a life-threatening situation has to take a sober look at what they’re facing and not confuse faith that they will prevail, in the end, with the discipline to face “the most brutal facts of your current reality, whatever they might be” (p. 42). I think that facing the fact I could get Stage IV cancer is just such a sober look. And I think that trying to create a general game plan right now for how I want to approach this eventuality expresses faith that I can prevail, even then.

But faith that I will prevail––trying to have hope––is one thing. How faith, understood as an orientation to The Sacred, factors into all of this is quite another.

Sherwood says that for people who are more emotionally and psychologically vulnerable in a crisis, religious faith is an especially strong factor in how likely they are to survive. Maybe that’s the wellspring of my life-long orientation toward religion? I survived my childhood brush with death, which I understood not so much as a brush with physical death (What can a 5-year-old understand of death?) as I did a psychological/emotional death due to the trauma of everything that happened to me then. But that brush sent me on what has proven to be a lifelong quest to make meaning––Meaning––out of what happened. And the province of Meaning is religion, which I have explored and encountered in a variety of facets, over the years, from joining a fundamentalist religious cult to getting my Ph.D. in the subject.

So where does this put me, as a would-be long-term survivor of cancer?

Sherwood says that faith is “a force multiplier, a factor that significantly increases or multiplies your strength or effectiveness” (p. 136, 141). But if you’re struggling with your beliefs, you have a 6% to 10% greater risk of dying (p. 144). It all depends on how big your picture of God or The Sacred is. If it’s broad enough to encompass both the good and the bad in life, you have an easier time assimilating negative events, and you are more likely to grow from adversity and move on. If you “worship ‘false gods’––alcohol, drugs, materialism, or narcissism––[you] tend to fall apart” (p. 145).

I’m not sure where this puts me. I have been struggling over the question of theodicy for several years, now. “Theodicy” is the question of how a supposedly good God can have created a world where there is such pain and suffering––both pain and suffering caused by the actions of sinful human beings, but also that caused by (appropriately so-called) “acts of God.”

My concept of God is not one of the “false” gods, the sugar-coated gods that Sherwood says don’t stand up under duress and most often lead to a collapse of the person’s belief system. In fact, it’s rather the opposite. I have a concept of the Divine that is based upon my observations of the totally of the creation around us. This means that I see the Divine as in part very beautiful and loving and creative, but also as fatally flawed and lacking…else the world would have less gratuitous suffering in it. I’m not particularly pleased about this last, and I unapologetically hold God directly responsible for the world being as bad-off as it is.

While my getting cancer––and an aggressive, late-stage cancer, at that––shocked me and made me very afraid…it really hasn’t sent my view of the Divine reeling. In fact, it has seemed to be pretty much what I’ve come to expect, given the world that this Divine has created.

It did, however, send my worldview reeling––my view of how to manage one of the most dangerous pieces of this world: doctors and the Medical Establishment. This worldview, which served me so well for 50 years, had to be scrapped. And that has caused me great, great fear and anguish. I lay the responsibility for that fear and anguish at the feet of the God who created a world where such things can happen. This is not some God I didn’t know before I got sick. It is the God that I had already come to recognize, even before then.

So am I angry with God? No more so now than I was before. Does this mean that I am grappling with God and therefore less likely to survive? Possibly. It would certainly be consistent with the ways of the God I know, for me to be more likely to die because I disagree with his decisions and hold him accountable for his actions.

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In the end, Sherwood says, what really “defines a survivor is the talent for making the most of life, however much remains” (p. 19). He says that we shouldn’t talk about this kind of emotional and psychological resilience as if it were some capacity that you were born with and can never change. In fact, he says, it’s a capacity that is developed and maintained by working on it. And adverse life events can give us the best opportunities to do this.

He cites the work of the daughter of Holocaust survivors who grew up to study the survivors of the camps. These people, she says, know both how to suffer and how to recover and rebuild. “’What keeps people going,’” she said, “’is the dialectic between their strong parts and their broken parts” (p. 182). They key is to be “armed and ready to confront trauma” because sooner or later the day will come when all of us have to deal with it. If we face this fact, she says, “we can equip ourselves by saying: Of course this will happen to me and this is what I will do” (p. 183).

Sounds like a recurrence battle plan, to me!

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People don’t survive traumatic events for just one reason, says Sherwood. There is no single “survivor” profile. In fact, people join the Survivors’ Club due to a variety of factors: willpower, luck, circumstances, prayer… They can all play a role, and some will play more of a role for some people and in some situations than for others. But in the end, survival is about what you bring to it––what you know and how you can apply it, the tools you have to work with at the time, and your survivor personality type.

To help readers discover their own survivor personality type, Sherwood’s book comes with an on-line test you can take. There are five main survivor types: fighters, believers, connectors, thinkers, and realists. It probably comes as no surprise to my friends and family that I come out as a fighter: someone who attacks adversity head-on with purpose and determination and never stops attacking, even at the lowest point. They may be aggressive and competitive, stubborn and unyielding, but these traits just pump them up for the battle and give them the endurance to handle more physical pain and suffering than most. They battle to the very end.

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Sherwood’s grandmother used to say that “We hang by a thread.”

“For most of us,” Sherwood writes, “the thread is only an abstraction. For survivors, it’s real. Those who have literally clung to life with their fingernails see each day differently than the rest of us.” The chance to confront your own mortality in a very immediate way becomes “a touchstone” that you return to again and again, “because it matters what you do with it” (p. 331-32). In the end, having this touchstone “elevates mere subsistence to real existence….This imperative to live fully is the most important and yet elusive lesson of the Survivors Club” (p. 337).

I’m not sure it’s a lesson I’ve mastered, yet, but I think maybe it’s a lesson I’m learning. Slowly. For one thing, because I live every day with the touchstones of my experience:

The skin on my chest and under my arm, where my breast and lymph nodes used to be, is tight; I have to exercise daily in order to prevent my shoulder from freezing up and making my right (dominant) arm more or less immobile. I wear my compression sleeve almost every day to prevent lymphedema in that arm, too.

I try to chew a few pieces of gum every day to stimulate saliva production, which has really waned since I was on chemo and just hasn’t rebounded yet. Lack of adequate saliva can make one susceptible to dental problems, so I also chew gum in order to bathe my mouth in xylitol, a sweetener that actually promotes dental health, according to my dentist. Chewing the gum seems to have strengthened the health of the roots of my teeth, which no longer hurt just a little on the right side when I eat.

Of course, improved dental health is really important now because I’m taking two drugs to try to help prevent recurrence: a daily anti-estrogen pill and a monthly oral bisphosphonate (which is primarily to prevent bone loss due to the anti-estrogen pill, but will also, hopefully, help to prevent recurrence in my bones).

I continue to deal with levels of fatigue that are daunting. On Wednesday this week we had an all-day retreat at my new job, where I’ve been working three part-days per week. On Wednesday, though, I had to be there all day to take notes on everything that was said and to help out the folks who were conducting the meeting. By the time the afternoon rolled around, I was fighting back tears, I was so tired. You know how you can get so tired that it hurts to try to stay up and moving and awake? That was me. I made it through the day, but at some cost…. I have no idea what my notes look like from that half of the day; I know I was having increasing difficulty attending to what people were saying and making sense of it so that I could write it down.

Under the best of conditions, I have chemo brain. This means that thinking can be like trying to run through a tank full of molasses. I forget things more easily, I’m more easily distracted, and I find it harder to focus/concentrate. I’m more prone to errors in whatever I do, whether it’s entering information into my check book, balancing the checkbook, typing, etc. Even though I still write things down, which I’ve always done, there are more holes in my efficiency self-check system. I find it’s harder for me to learn new things; I am more intimidated by learning curves. And I find it harder to prioritize tasks.

These are the touchstones of my mortality, the things I encounter every day to remind me of what has just happened to me. I’m detecting subtle signs that they are having their effect. That they are reminding/impelling me to live more fully.

I’m making more of an effort to go out in the evenings to events that I’d like to attend. I may have to save up my energy to do it, or pay an energy price later for having done it…but I go more often now. To a lecture, to a friend’s house, to a conference, to a meeting, for supper….

I also experience odd moments of simple, uncomplicated peace:

I love the way the sun streams in the windows on the east side of my house by about mid-morning. There’s shade there in the early morning, but bright sun by mid-morning, filling my living room––and therefore most of the adjacent living areas of the house––with a vibrant light. My solar tube funnels this clear light onto the couch, where I often take my afternoon naps (when I’m not at work or a doctor’s appointment), bathed in healing sunlight. Sometimes it’s all just so really peaceful and beautiful….

I love the sounds of the frogs and bugs and birds in the night, as I drift off to sleep.

I love looking out my windows and seeing the red mulch in my flower beds against the bright summer green of my grass.

I love the birds who flock to my feeders. Even the squirrels who keep my dogs so thoroughly agitated and thus entertained by a good chase!

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That said, I am going to wrap this thing up and get ready to go live my life more fully some more! I’m going to Virginia today, where I will spend the weekend with my Fry Sisters––two women from the IBC listserv who were going through radiation treatment (being fried) at about the same time I was.

But first, I may need to take a little nap. Having confronted my mortality once in the last year, I don’t want to confront it again by falling asleep at the wheel!

6-27-2010 Update – And So It Goes

2010-06-27T21:31:00.000-07:00

I had an “Ashley” moment this week. It took me very much by surprise.

Ashley, my cancer mentor who died a few weeks ago, went out for lunch with her pastor several weeks before she died. They were sitting at an outdoor table at a restaurant in Chapel Hill, watching people walk by, and Ashley commented that now that she was dying, people looked beautiful to her. All people. All the time. The only other time people had seemed this beautiful, she said, was when she was pregnant with her daughter.

When I heard this story at Ashley’s memorial service, I was deeply moved. It says so much about the kind of person she was.

One day this week, as I was driving into Chapel Hill, I sped past a man walking along the sidewalk on the 15-501. He was probably in his late 30s or 40s, tallish, lanky, with an angular face and a mustache. He had on work clothes, ear protectors, and some kind of bandana or handkerchief tied around his forehead. He wasn’t particularly handsome, though he wasn’t homely, either. He wasn’t smiling or laughing. He was just looking straight ahead as he walked down the sidewalk.

When I glanced at him, as I passed by, I was hit with this powerful awareness of how beautiful he was. It was a very odd thing to happen. There was no discernable reason for it. It just happened. An awareness of something fundamentally beautiful in him that had nothing to do with how tall he was or his angular face or anything else, because by those measures, he certainly was not beautiful at all.

This was a pure Ashley moment. No doubt about it.

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Last weekend I went to the Cancer Survivors’ Summit in Charlotte, where one of the speakers was a 15-year survivor. She made a comment that really resonated with me. She said that it took awhile after her treatments were finished, but she slowly quit thinking of herself as a sick person, and began to think of herself as a basically healthy person who had had cancer.

I thought that sounded true about me. Before cancer, I was fundamentally healthy. Overweight, yes. But other than that, I was fundamentally healthy. After cancer, I am still fundamentally healthy. Granted, I have some health issues now as a result of my treatments that I didn’t have before. And I am at greater risk now for some health problems than I was before.

But still, in the end, at this moment in time, I am a fundamentally healthy person who just happens to have had cancer. I have a resilient little body. (OK. I really can say that! I’ve lost 60 lbs in the last year!) It took the cancer treatments well. I’ve done everything I can do to support my body in its efforts to heal both from the cancer and the cancer treatments, and it’s responded beautifully.

I don’t have my old health status back, and in some regrettable ways, I will never have that status again. On the other hand, I do have some positive things health-wise that I didn’t have before, either. Like 60 fewer lbs. That, right there, is a tiny, tiny pony.

I continue to adjust, psychologically, to the brutality of what I had to allow to be done to me, last year. To become a little less horrified. A little more accepting. Each day that passes as I piece together a new life, makes it easier to do this.

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Of course, my unconscious is getting in on the act, too.

I have been thinking a lot about my extreme emotional reactions to my cancer treatments and how those reactions spring from the trauma I felt as a 5-year-old in the hospital so many years ago. I am working very actively to try to get past this trauma, to erase it, so that I can move on more productively with my life––whether that future life involves getting cancer again or being healthy and dying of old age.

I was thinking about how I went off on those poor radiation techs when they were setting me up to receive radiation treatments, getting up off the table after set-up was done and sobbing, asking them why they had to hurt me, why they couldn’t just treat me without damaging me.

I was feeling bad about it all. Sorry that I went off on them. Sorry that I have those feelings. (Really, really sorry.) Sorry that I had to subject myself to a dose of radiation to my chest that, if I had gotten it over my whole body instead, would have been lethal. It would have killed me. Wondering if I am going to have fractured ribs or lung problems or any of the other problems that can appear as late side effects of having radiation treatment.

And that night I had a dream. I saw the “Danger, Radiation” sign that is posted wherever they use radioactive materials. You know, the black trefoil on the deep yellow background? As I looked at it, the trefoil changed into a white peace dove with its wings outspread, and it flew off slowly and gracefully into the sky. The feelings that went with this were utter peace, utter calm. Utter goodness.

Then I woke up.

I had to laugh at myself. Here I am freaking out on a conscious level about the things I was being asked to do to my body, then in retrospect mourning the entire situation and wondering what the future holds for me…and my unconscious is sending me “chill out” messages! “Peace! The radiation is, to you, a gentle dove. It is peace. It is all good things.”

Subversive unconscious!

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As for lung damage, I am happy to report that there appears to be none. I had a set of lung function tests this week, and they came back showing that my lung function today is as good as it’s ever been. Immediately after I finished radiation, the test that measures my ability to take a good, deep breath was really down––something like 60% of the expected value for someone of my age, gender, etc. It was the only measure that was down, then. The rest were OK…most in the 90%’s.

Now that low measure is 110%, and the ones that were in the 90%’s are around or just over 100%.

I attribute it to the supplement regimen I’m taking, particularly the anti-oxidants, which I hope are going in and mopping up the free radicals and healing the damage caused by them.

My chest x-ray also showed no changes from what it showed in March, indicating that there is no post-treatment fibrosis or other trouble.

I am reassured.

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I got my 3-month blood work done this week, too. Though not all of the tests are in yet, they look good. A couple of the blood markers are a little bit below normal, but not very far. Dr. C says that in some women who have had chemo, these markers stay down and never come back up to normal again. It doesn’t seem to be very alarming.

The tumor marker test results weren’t in yet, when I saw Dr. C, so we don’t know what they indicate. I suspect they are fine.

And of course, there are the periodic skin issues around my mastectomy line and the radiation fields. A day after I got my chest x-ray, I found a watery blister/bump on my chest wall a little over an inch above the scar line. Dr. C was a tiny bit concerned about it and told me to watch it. But I think it’s probably OK, too.

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I continue to think about death––in particular, my own death. Now that the immediate crisis of seeking treatment is past, I have the time to really think about these things. To face this aspect of what just happened.

The first thing I think is that I need to create a bucket list. I don’t have one, and I think I’m now in a position where I certainly should. Recently there was a newspaper article on the front page of the Raleigh News & Observer about searching for the causes of breast cancer. I was the “human interest” angle for the piece. When my friend Alice saw my picture there, staring up at her from the front page, she emailed me a congratulations on appearing so prominently in the paper––and it not being the police blotter! :)

She made me think that this might be an interesting first item for my bucket list: making the police blotter. Not for anything major and scandalous, mind you! It would have to be for some judiciously chosen offense with a predictable, likely legal consequence. But it could be an interesting thing to try to do, no?!

Anyone have any other suggestions of interesting things to do before you die?

I’ve also been very interested in the way that the cancer survivors’ movement seems to do its best to not make a place where one’s own death can be discussed. This is probably because the movement itself is fairly new and springs out of a reaction to the common expectation that a cancer diagnosis means eventual death. As treatments have helped more people live longer after a cancer diagnosis, it gradually became apparent that there was this increasing pool of survivors who needed support services, especially the encouragement to go out and build new lives for themselves. So the “flavor” of a lot of cancer survivor events is full of “rah! rah!” without much room for anything else. Happy faces, only. Positive thinking, only.

Sometimes that “rah! rah!” rings a bit forced and hollow, though.

At the survivors’ summit I attended in Charlotte last weekend, the subject of death was skirted quite a bit, but seldom directly addressed. There were two 20-minute break-out sessions on estate planning and preparing advance directives. Obviously these skirted the subject of death by treating related topics…but not death itself.

There was a one hour break-out session on hospice care. Again, it was nice. I had a good talk with some of the hospice folks who were vendors/sponsors of the summit. But the formal talk focused more on the mechanics and details of getting end-of-life care, what they will do, etc. It focused on the practical details surrounding preparing for death…not on the psycho-spiritual aspects of facing death, itself.

The summit set-up featured a small table furnished as a kind of shrine to those who have “lost their battle” (note the use of a euphemism) and those who were too sick to attend. A nice touch, true. But not exactly an active engagement with the reality that death enters the lives of cancer patients in very immediate ways that most people don’t have to deal with.

The best bow to the reality of death was when one of the main speakers gave a talk on communicating in “mortal time”––that time when the prospect of the end of life has become suddenly very real. The speaker has written a small book on how people who comfort and support those with life-threatening illnesses can have meaningful conversations about the possibility of death. I bought it, of course, and can’t wait to read it.

What the summit needed, I thought as I was driving home, was a longer breakout session led by a chaplain where people who wanted to discuss the psycho-spiritual aspects of facing their own death (or the deaths of those they were caring for) could do so. That, it seems, is getting a little too close to the bone for comfort in a setting that is focused on rah-rah support for survivorship.

Maybe next year?

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Just finished a book by a 20-some year veteran hospice nurse. It’s called The Final Act of Living…which is, of course, dying. It’s an interesting point of view, don’t you think? That dying is an act of living…the final one.

She says several times throughout the book that people tend to die pretty much as they lived. That one really gives me pause.

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This was posted by someone on the BC Mets listserv (for people with end-stage breast cancer and their supporters) this week:

This disease sucks!!!!!!! For 10 years I've been fighting and it's just to much.

I fight to stay alive.

I fight to go to work to pay my medical bills

I fight to keep my job to pay my medical bills

I fight with the people who call and want more money for my medical bills

I fight with the doctor. because he wants more medical treatments that cost most
medical bills

I fight everyday to keep the pain at a tolerable level

I fight to make our house payment and put food on the table

I fight with the neighbor who's dog barks all night long

How do you do this? I feel so beaten down. Is it bad Karma?

It seems cancer is a slow torture that takes everything

I've lost my fight. How do you do this?

I can't be the only one who feels like this please I need to hear from
you all. How do you do this?

The only thing I could add to this is, I fight to learn as much as I can about cancer and its treatment. I fight to figure out what the best course of action is for me to take, in light of that understanding. I fight to stay NED. I fight to make sure that the treatment I get is what seems best for me according to a variety of criteria that my care providers don’t always take into consideration.

But the exhaustion, the tiredness, the frustration, the waves of hopelessness that can wash over you––I totally resonate with that.

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I have begun doing EMDR with a local psychiatrist. (A damned expensive engagement, I must say!) We have done the “history-taking” thing and created a safe place for me to return to as we’re working on the traumatic stuff. I won’t get a chance to begin processing any of the trauma, however, until the week after the 4th. I don’t know whether I’m looking forward to it, or not.

On the one hand, the thought of not having these feelings percolating under the surface of my calm demeanor is appealing. On the other hand, when I can distract myself with other activities and pretend those feelings aren’t there and don’t need any attention, it is so blessedly wonderful.

I guess in some ways going through EMDR is rather like going through cancer treatment. For me, there were few physical symptoms of the cancer; I felt fine. And when I can distract myself with other things, I don’t have to feel the anxiety and anger that are buried so deeply inside me, either. I feel fine. Cancer treatment required me to submit to not feeling so fine for awhile. EMDR will do the same.

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As part of my effort to confront my feelings about doctors and hospitals from the point of view of my 5-year-old self, I took a tour this week of the NC Children’s Hospital. I must say, I certainly was about 50 years premature in having a life-threatening illness as a child! I should have been born in 2003 rather than in 1953 and gotten deathly ill five years later!

There is color and light everywhere in the hospital. Child-style artwork all over the walls––wild animals, etc. Some kids are given paint to make their own artwork on the windows of their rooms. (It cleans up later, for when the next child moves in.) There are more toys and books and DVDs/videos than you can imagine, including mobiles for infant cribs and bicycles that can be ridden in the hallways for the pre-schoolers and younger children. There’s a giant playroom with soft flooring and playground-type equipment. There’s a room for teenagers with a Wii and TV and DVD player and kitchenette (no adults allowed in there without invitation from a teen).

The room where children are taken for procedures, like the one I had in the middle of the night to drain the fluid from my abdomen, looks pretty sterile from about eye-level down, but if you’re lying on the procedure table and looking up, the ceiling and upper part of the walls are painted with a jungle scene and all kinds of animals peering down at you.

As a child with a highly infectious disease, I was assured, I would still have been able to have access to all of these things. They would just have to take extra safety precautions to clean up after me when I was done playing with something. But I would not have been that isolated or forbidden to enjoy the playthings just because I was contagious. They even have volunteer “huggers” who come and spend time with children whose families can’t be there––or are forbidden by the Court to be there!

When I was touring the hospital, one little girl came up to the woman who was showing me around and said, “Guess what! I get to go home!” and they exchanged high-fives. We were in the playground area, at the time. I looked around me and thought, “Who the heck would want to leave THIS?!!”

It was a far cry from the white, sterile, barren hospital that I remember from 50 years ago. I’m glad they’re more aware of kids’ needs, nowadays.

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As another part of my “coming to terms” process, I had one final conversation with Dr. N, my surgeon. She brought along the resident, this time, though I didn’t know this was going to happen. Nobody informed me ahead of time so that I could prepare. I felt a bit blind-sided…but not totally. Something in my gut told me he would be there. I don’t know why.

I told Dr. N that after much thought, I was glad that if she was going to let someone cut on me besides her, she had chosen this resident. I asked him some questions about things he’d said to me on the day after my surgery, and he explained what he’d meant. I asked both of them about the distinction between “cutting” and “dissection.” To me, they’re the same thing. But to them, they’re not. So I learned something about doing surgery.

In the end, I told Dr. N that I was pleased she had chosen this resident to be there, if she was going to have someone else cut my flesh that day.

I told them both that I had been talking about this “student” cutting on me issue with a friend the night before, and my friend had fixed me with his eyes and said, “If he was the chief resident, he is NOT a student!” I apologized to the resident for not understanding the doctoring hierarchy before and for failing to appreciate the training and skill he brought to the operating room. I emphasized that it wasn’t personal against him, ever. It was just me, my fears, my past, and my lack of understanding.

I told him that I appreciated the fact that when Dr. N told him he could leave if he wanted to, he had decided to stay and work on me. Then I told him that this was a huge step forward for me to be able to say this and was probably the best he was going to get from me right now, so he’d better take it! At that, he finally cracked a bit of a smile.

I told Dr. N that in light of what I had learned that day about dissection and cutting––some basic things about how surgery is done––it seemed more and more to me as if it’s true that she did not give me the letter of what I asked for with this surgery. By doing the surgery herself, though––by staying in the room for the whole thing, by making all of the decisions about what would happen and where, by doing the dissection portions, etc.––she was giving me the spirit of what I had asked for. And, I said, I appreciated that fact. The letter of what I asked for was based on some incomplete understandings, on my part, of what surgery entails. So her listening to the spirit of what I asked for was probably the wisest thing.

I told her I am still unclear how the pathology report could have come to read the way it did…how the “gross” pathology person could have made the presumptions she did about which nodes belonged to which levels, and recorded those presumptions in the final report. I said that it is probably a matter of my deficient understanding of anatomy, and I’ll just wait for that to become clear to me sometime in the future.

But, I said, I think the evidence points to the need for me to have had the full axillary node dissection, and there were certainly some advantages in having done so. Because all three levels of nodes were taken, and because I turned out to be essentially node negative, I could fairly safely refuse to have radiation to my axilla, which probably helped to spare the lymphatic capillaries in my skin from scarring from radiation––which is important because it’s the only lymph transport system remaining now in my axilla.

And I thanked her for taking the time to help me come to terms. I appreciated it very, very much.

What I did not tell her is that I am considering how comfortable I might feel in the future at having a surgical resident work on me. I’m not sure I would feel any more comfortable than I did this time around. But then again, I might…? I am certainly considering changing my attitude, if there is a next time. Not sure I’ll be able to do so. But I’m entertaining the idea and seeing how badly my stomach knots up when I do so.

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As I mentioned earlier, I had my 3-month check-up with Dr. C late this last week. We went over my list of symptoms just fine. She thought my “Femara” song was funny and noted that I had to sing it to Denise (the oncology nurse) because she would love it.

But when it came time for the questions I had to ask her, we got bogged down in a discussion that was unproductive and wound up with her telling me that she doesn’t think this relationship is working because we’re not communicating and she thinks I might be happier elsewhere. She suggested I go to Dr. M. I told her I won’t leave UNC.

She can’t outright refuse to give me care. But she is coming as close to it as the State laws allow her to. She suggested that someone else in the practice might work, though it was clear that Dr. H and I were not a good fit. I told her that the only other person that came recommended to me is Dr. A. So now I have a double-long consultation appointment with her scheduled for July 1st.

Ironically, that’s the one-year anniversary of my first meeting with my treatment team. The water under the bridge. How I wish I could go back and make it all go away. Not the cancer. Just the interactions I have had with my physicians. Just the whole professional/interpersonal side of having cancer. How I wish that it could all have been different. That *I* could have been different? That I can be different now? I don’t know. But this has been almost totally a psychological/emotional disaster that doesn’t seem to want to quit.

When Denise came into the exam room, after Dr. C left, I asked her if I switch my care to Dr. A, whether she would continue to be my nurse. She said she could do this because she and Susan (the other oncology nurse) sometimes trade off on patients. I said that Susan is another person there who does not like to deal with me. As I was leaving the exam room, she hugged me and said it would be OK. I was sobbing and said no it wouldn’t. That I don’t think it will ever be OK.

The ill-fated discussion began as we were segueing out of my “how am I doing” list and into my “questions to ask” list (both of which I gave her a copy of). I was trying to make the “questions” brief, because we were running long in our appointment. I hurriedly pointed out the following section in the list (keep reading, below) and a few highlighted/annotated areas in an attached 3-page article about treating metastatic BC that appeared in the Journal of Clinical Oncology (2001). I figured she could read all of this later, if she wanted. I just wanted to point it out to her.

The article (not reproduced below) says that maybe we should be more aggressive in doing surveillance for metastatic disease and treating it for a cure, not just for control of disease progression. I liked what the article said and had annotated it for myself…then as an afterthought figured she could gain insight into what I want, if I get metastatic disease, by seeing what the article said and my reactions to it. That’s why I gave her a copy.

Here’s what I wrote in my “questions to ask” list:

From “A Prospective Evaluation of the Durability of Palliative Interventions for
Patients with Metastatic Breast Cancer” (Cancer 2010; published on-line at www.interscience.wiley.com):

“When caring for a patient with metastatic disease, the goals of treatment are to prolong progression-free survival and to palliate symptoms when they arise. In its purest sense, palliative treatment is undertaken to provide symptom relief and maintain quality of life.”

This is what I don’t want, if I get metastatic disease. Swear to me that you won’t treat me palliatively until I say I’m ready to go that route? Swear to me that you won’t look at me as “dead woman walking” if I get a metastasis?

If I get metastatic disease, I want my first course of action to be to fight it to cure it again. Not to try to merely halt its progression and then, when that fails, to make me comfortable until I die.

Swear to me that you will do that for me? That palliation will NOT enter the picture until I say I’m ready to do that?

“Even the most aggressive and gruesome cancers can sometimes be stayed. They rarely are, and what we have to throw at them is so crude and so toxic. But sometimes that primitive therapy works” (p. 77 of Jerome Groopman, MD’s The Anatomy of Hope).

But my attempt to quickly reference all this for her later consideration didn’t work. She really latched onto this––and the race was on. She is the one who drew out the discussion. Not me. All she had to do was say, in response to me, “Yes, if you get a recurrence, I will try to cure you, although when it comes to Stage IV, as you know, this is not very often successful. We’ll shoot for a cure and be happy with anything short of that that gives you stable disease and a good quality of life.”

But she didn’t.

She said that she thought I had the wrong idea of what “palliative” is, and that many women live for years with stable disease that doesn’t progress. She has one patient that has been on different treatments for Stage IV breast cancer for 5-7 years, and this patient’s goal is to keep switching from one treatment to another, as they quit working for her, in an effort to stay alive until medical science comes up with something that *will* cure her. Dr. C says that she has many patients for whom breast cancer has become a kind of chronic health condition.

I said yes, but this is not what I want. I don’t want to shoot for making a recurrence into a chronic health condition. I want to shoot for eradicating it, and if we can’t do that, then we settle for stable and chronic, instead.

She said that she doesn’t think it’s wise to take a patient off of a treatment that’s working for them and keeping them stable (which surprised me, because I never suggested this or intended it), just to try something else in hope of a cure. And she sees no point in giving a patient a treatment that’s so toxic that it makes them feel miserable and may or may not eradicate the cancer, when they have a treatment available that can make the patient stable with their disease––at least for a little while.

I said that if it’s a matter of making me feel miserable for awhile but having a reasonable hope of eradicating the cancer, then I’m all for feeling miserable for awhile. That’s what I want.

I said that taking me off a treatment that is working to keep the disease stable is not what I was suggesting she do. I am only suggesting that we be creative in trying to find other things that we can use to attack the cancer from another angle at the same time that we’re using something that’s working in this partial fashion, and maybe then get the disease pushed back into NED again.

She said that she feels uncomfortable with the idea of treating a patient with anything other than drugs, combinations and dosages that have been shown to work in large clinical trials. She isn’t comfortable treating a patient as an “n” of “1.” And she said that she thinks it’s premature to be having this conversation.

I said that for me it’s not any more premature than drawing up a will or a health care power of attorney. It’s just a plan for the future, for what we will do “if.” A game plan. Having it in place against the future, I can sleep more easily at night.

I said that what bothers me about the scenario she described was the assumption that there was no way to cure a recurrence and that merely controlling the cancer was the only goal, instead of eradicating it. I said it felt to me like oncologists were giving up on the goal of curing Stage IV patients by seeking only to control the recurrence instead of eradicate it. I said I got this impression from reading a bit of the medical lit and from things that are said on the BC Mets listserv by women who have Stage IV disease.

I said that when I was a brand new cancer patient, I came walking in off the street and their message was, “We think we can cure you.” If I come back in with a recurrence, I want them to say to me, “We are going to try to cure you, although as you know, it is going to be much more difficult now. And if we can’t cure you, we’ll try to put the disease into a holding pattern and give you a good quality of life for as long as possible.”

She said that she doesn’t feel it’s responsible to offer women with Stage IV disease the possibility of a cure when, as I know, that is not likely possible in most cases.

I said that she doesn’t have to tell all women that. Only me.

I said (several times) that I was not asking her to promise me a cure. Only to promise me that she would *try* to eradicate the disease, even if I present again with Stage IV breast cancer. And we’d settle for whatever we could get, with eradication as the goal.

“What I am asking you to give me,” I said, “is hope.” This seemed to startle her, give her pause.

I continued: “Hope of disease-free survival. I know the odds are slim that if I had a recurrence we could get me back to NED status. But what I need you to tell me is that you will help me fight for that, that you are not dismissing out of hand the idea that this is a goal we should shoot for: to eradicate the cancer again.”

She said, somewhat hotly, that of course she wants to eradicate cancer. Why do I think she does the work that she does? She is always trying to find new drugs and new combinations of drugs that will work to do that. She seemed more than a little insulted.

[This response of hers really threw me for a loop. I couldn’t figure out where she was coming from. After some reflection, I think I understand. I was saying that for me, as a potential Stage IV breast cancer patient, I didn’t want her to dismiss the goal of eradication, although it is a goal that is dismissed for most Stage IV BC patients. She took this request for how to approach my situation as a more general attack on her entire professional effort to treat women with breast cancer at any stage, period. That wasn’t anywhere in my heart or on my mind. She is quite good at what she does, and I didn’t mean to impugn that. She took a specific, blew it up, and applied it out of context.]

I said that as long as she is willing to work to eradicate the cancer even in Stage IV patients, not just keep it from progressing, that’s all I need to hear.

I was beginning to feel guardedly positive about the mindset she would have in treating me, if I ever get a recurrence, as if we were really both on the same page after all and just maybe had been talking past each other, using terms differently, but getting that ironed out, when…

It was at this point that she began to suggest that our relationship is not working, that we don’t seem to be communicating well, and that she cannot spend this much time talking to me about such things when we meet. [I note that I had no intention for this conversation to take so long. A simple reassurance would have done the trick for me. But she did not offer me one….]

She briefly referenced my questions a few months ago about bisphosphonates as another example of my needing too much communication and feedback from her. [I talked to her in clinic once, asked a question by email, and attempted to ask a follow-up question by email, but was basically told “because I said so” and told not to ask again. So I went elsewhere to try to find an answer to my question, which was not easy to do and took considerable scrounging around on my part. I still don’t have what feels like a firm answer; only a possible one.]

Needless to say, I did not leave the clinic feeling very good.

Yet I should not be surprised at this turn of events, I suppose. This is not the first time she has hinted that she doesn’t want to treat me. She has hinted at this almost from the first time I met with her. And has continued to hint almost every time thereafter. As a doctor at a State-supported hospital, she cannot outright refuse to treat me. But she came as close today as I think she probably could.

6-20-2010 Update -- The Joy of Cancer

2010-06-20T20:36:00.000-07:00

6-20-2010 Update – The Joy of Cancer

Well, today is the one year anniversary of when Nancy told me that the funny redness of my breast sounded like inflammatory breast cancer. When I looked on the Internet, I knew in the pit of my stomach that she was right. I had cancer. And an aggressive one, at that.

As I have entered this one-year anniversary season, my emotions have been flip-flopping almost as wildly as they did when I was first approaching this diagnosis. Most of the time I have been frankly depressed. Unbelievably sad. Nostalgic. Angry. And of course some “anxious” thrown in there––especially when I think about what I had to go through with my treatment (and team) in the past year and contemplate having to go through anything remotely resembling this again (God forbid!).

On Friday and Saturday I went to a cancer survivors’ summit in Charlotte. While there, I was reminded of something that I had not thought about in a long time. I don’t remember whether I’ve mentioned it in my blogs before. Probably not. It’s kind of odd and, frankly, a little embarrassing. But here goes:

Shortly after my diagnosis, a friend told me that his spirit guide had offered to heal the cancer. Physically heal me. The friend said he’d seen it happen before, when his guide had felt moved to offer healing to someone, they had accepted the offer…and it had happened. The person had been cured. The guide doesn’t always offer this, said my friend, so it was noteworthy that he had offered in my case.

You would think I would have been ecstatic, right? That I would grasp at this like a drowning woman to a straw? I had already asked for, and begun receiving, prayers and healing energies sent on my behalf. And I was very grateful for them. Yet my reaction to this friend’s offer from his guide, oddly enough, was more along the lines of “Oh, no!”

I knew, for reasons I could not explain, that I did not want physical healing at that time. Maybe later…but not right away. I knew, for reasons I could not explain, that there was something for me, in this experience of cancer that I was about to have. And that receiving a physical healing so quickly after my diagnosis would short-circuit that thing that was waiting for me to discover it. Or learn it. Or whatever was going to happen.

So I thanked my friend and asked that his guide heal me, indeed, but from the inside, out. In the soul and the psyche first, in the heart, before the body.

I guess maybe the difficulties I’m having as a cancer survivor belie the idea that the guide’s healing worked as I asked for it to! I seem to have healed on the outside (the body) and am working now on healing the inside (the spirit).

More importantly, remembering all of this reminds me that, in some way and for some reason that I still cannot explain, I asked for this. I needed this. There is something *for* me, in this cancer experience…whether it is over, now, or whether this is just an intermission in a longer drama.

I’m supposed to be getting something out of this. There’s something meaningful here for me. Something positive. Something worthwhile.

I don’t know what it is, yet, but I need to keep looking until I find it.

I’ve got chemo brain, so I’m not as detail-oriented and quick to learn as I used to be. I am much more easily fatigued than I used to be, so I can’t run as far or as fast or get as much done as I used to. I have aches and pains in my body, now, that I never used to have, so I can’t do all of the same things I used to do. And I have these layers of trauma and anxiety and depression to work through. These are the legacies of the last year of my life.

Still, I need to keep looking until I find it. The pony in the manure. The pearl of great price. Call it what you will.

One year ago today, I asked for the journey; I accepted the challenge. It’s not over, yet. There is something unique to me, waiting for me just around the corner, just over the top of that hill….