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.
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:
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.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)
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”):
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.• 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.
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.
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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!
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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.”
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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.
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.• 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.
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 completeShe 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.
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.
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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 stayIn 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.
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.
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.
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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[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.]
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.
Me (angrily): I don’t want anything from you! I don’t even want to know you! II 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.
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!
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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.
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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.
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