January 20, 2011 Update ––

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.

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

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.

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

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.

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

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.

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

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.

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

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)

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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. :)