9-19-09 Update – On Survival

I began writing this update on 9-12-09. It has taken me this long to finish it because it’s been a difficult one for me to do. It has seemed more fun to clean the oven, scrub the toilets and wash the windows than to write this piece.

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When you are diagnosed with a life-threatening illness, one of the first questions you want an answer to is “What are my chances?” The answer I got was that there is a 30-40% survival rate at 5 years from diagnosis. This means that in a group of 100 IBC patients, only 30-40 of us will be alive five years from now. No one can tell me whether I will be in the group that survives or the group that doesn’t.

That was pretty clear. No ambiguity. Plain, simple answer to a plain, simple question.

Then treatment begins. With IBC it’s multi-modal treatment. We start with chemo. Then when that’s done, we move on to mastectomy (in which they take not just the breast but the lymph nodes under the arm, too…leading to a reasonably high risk of acquiring lymphedema), and then we move on to radiation therapy.

Some patients just quietly do whatever the doctor says they have to do. Not me. I ask questions, look for alternatives…I ask why this and why not that? And then I ask, “What are my chances if I do that instead of this?” And you know what kind of answer I get?

I can’t tell you, because I haven’t figured it out yet.

Here’s how the conversation with the doctors tends to go:

Me: What are my chances of getting control of this cancer if I do Y instead of the X that you recommended?

Doctors: Studies have shown [Note: Almost never are these studies provided to me for my own review, even when I ask for them.] that doing X gives a disease-free survival of 27.8% as compared to not doing X which gives an overall survival of 13.7%. A study done in Belgium in 1995 showed that Y undertaken in combination with praying naked to the sun god gave an overall survival rate of 6.5%, but if undertaken in combination with praying naked to the moon goddess resulted in a breast cancer-specific survival rate of 24.6%.

Me: Huh?

Doctors: [Repeating jumble of different “survival” terms and stats.] So we don’t recommend doing Y.

Me: I’m sorry, but I’m still not clear as to why that is. I’m not hearing a simple answer to my simple question. I’m just hearing a bunch of different terms all thrown around with a bunch of percentages attached to them. What the distinction is between those terms and why they are meaningful and, most important of all, how they all contribute to providing a simple answer to my simple question—you’ve lost me.

Doctors: [Repeating jumble of different “survival” terms and stats.] So we don’t recommend doing Y. You see now?

Me: No.

One cannot help walking away feeling either (a) confused or (b) as if smoke is being blown up one’s nether regions in order to get one to do what the doctor wants one to do or (c) both of the above. Oh. There’s also (d) unbearably stupid.

In the meantime, one feels no closer to making an informed decision about what treatment one wants to embrace…and less and less confident about one’s doctors. They should be able to communicate in simple English, with straightforward, simple answers to straightforward questions. Like they did at the very first, when you wanted to know what your chances of survival were. When they consistently fail to do so later on, one begins to wonder what’s going on.

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Survival. From the very first weeks of my life, it has been all about the struggle for survival. I’ve been aware of this for a long time—that on one level or another my life always seems to have revolved around this struggle. In fact, I think this sense of struggle has profoundly shaped my lifelong search for “mimsy borogoves”—that ideal, magical place where there is no struggle, no want, no injustice, no pain, no fear. That wonderful, safe place on whose existence I am having to give up hope, as I am forced to deal with the fact that there is no safe place.

I was my mother’s first-born and, like many women in the early 1950s, she was “encouraged” to breastfeed me, which she tried valiantly to do. What the medical recommendations failed to take into account was that my mother was a redhead with very fair skin and inverted nipples. As I tried to suck nourishment from her body, her fair skin buckled under the stress of my infant mouth seeking a hold on a nipple that would not pop out and engage with me. Her nipples cracked and became sore; the pain made it even more difficult for the let-down reflex to operate and give me milk. For six weeks I was hungry and unhappy—an unsettled and insecure infant.

My mother wasn’t enjoying the experience any more than I was. She was in pain, herself, and she was frustrated. She repeatedly told her doctor that she was having trouble nursing and thought she needed to put me on formula. He repeatedly ignored her pleas and told her to just keep trying. After six weeks of this misery for mother and baby, she said to hell with the doctor. She bought Dr. Benjamin Spock’s book on baby and child care, found a recipe for infant formula in there, and at last both mother and baby began to thrive. For the first time, thanks to my mother, I became a survivor.

Do I remember this experience? No, of course not. But I cannot believe that it failed to leave its mark on me. My first impressions of what it meant to be here were not positive ones, nurturant ones, bountiful ones. Though I know I was loved, my first impressions of life on this planet were also shaped by the lack of one of the most fundamental needs that a newborn can have—the need for a full tummy on a regular basis.

Lesson learned: This is a place of want, where survival cannot be assumed. You have to struggle for it. You can never take it for granted. Not for one moment.

Throughout my pre-school years I suffered from allergies and asthma and constant sore throats. Thus it was that at the age of five I wound up having my tonsils removed, and that tonsillectomy, as you all know by now, was possibly the source of the infectious hepatitis that put me at the mercy of the medical profession, again, for six critical weeks of my life. This time, however, the profession rose to its full height. Though I was not expected to live, they saved my physical life, and I became, for the second time, a survivor. But the cost of that survival was steep, as the medical profession did a very poor job of addressing the psychological needs of the small, frightened child that I was.

On the basis of what happened during that encounter, I refined my worldview and my personal (if largely unarticulated) plan for long-term survival—for what to do in the future, how to behave, how to try to avoid high-stakes encounters with the medical world, and how to handle them when they became necessary anyway. My plan served me well for the next 50 years. It said, “Be careful of the medical profession. If you must engage, engage with your eyes wide open, and always, always, always be alert.”

This attitude helped me become another kind of survivor, of sorts, over the years, giving me the boldness to question medical pronouncements, refuse medications that later turned out to have been ill-advised to start with, prevent accidental medication mistakes…. And most of the time, this worked out well for me and my family.

Most importantly, this attitude led me to take a minimalist approach to putting drugs into my body. I have tended to proceed with a good deal of caution when it comes to the pharmaceuticals I have allowed to go into my body or the medical procedures I have allowed to be done to it.

I have lived my life in the expectation that this approach to my physical health and well-being would stand me in good stead—that I would live to be a ripe old age using this strategy. After all, three of my grandparents lived into their mid- to late-90’s—and the one that died young only did so because of an accident. Allowing for a certain loss of inherent fitness in the “struggle for survival” due to the fact that I was born and raised at a time when foods were more processed and environmental toxins were more prevalent, I still thought that I could probably expect to live somewhere well into my 80s.

But that was before cancer. That was before my personal, lifelong struggle for survival took on a whole new and very unexpected shape.

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Laurence Gonzales, the author of Deep Survival, would describe this attitude I have always had toward medicine as my “model of the world.” It’s a model that has its own “underlying assumptions based on experience, memories, secondary emotions, and emotional bookmarks, all of which influence what we expect to happen and what we plan to do about it” (73).

Well, I didn’t expect any of this to happen. I didn’t expect cancer, I especially didn’t expect an aggressive, late-stage cancer, and I certainly didn’t have a very good set of plans in place for dealing with it. That much has become clear over the last ten weeks.

This doesn’t mean that my model of the world has been totally useless to me. Bernie Siegel’s book, Love, Medicine and Miracles, has reassured me that my reactions to my changed world have been the kind that he tended to see among the cancer survivors in his care who had the best long-term prospects: refusal to be a victim, educating themselves in the details of their own care, questioning the doctor because they want to understand and participate in their treatment, and the demand for personal dignity and control (24).

But one part of what I have been needing has been missing. One important piece in the survival of an exceptional patient, according to Siegel, is the ability to create a relationship of trust between the doctor and the patient, because each has learned about—and learned to respect—the other’s beliefs (37). From the outset my confidence in my health care team has been shaky in this regard. I have not felt confident, at all, that they “get me.”

At this point in time, my health care team is focused on my oncologist, Dr. H., who administers my chemo. While I have always liked him a great deal and have been confident of his technical and intellectual skills, I have also been more or less cautious toward him. He is, after all, poised as the central player in the medical scenario unfolding before me today—a scenario that violates every tenet of the map of the world that has stood me in such good stead for 50 years.

Thus, it has been important for me to feel that we understood each other. Unfortunately, as the weeks of our mutual engagement rolled by, it became obvious that we had a fundamental problem in our ability to communicate. No matter how hard I tried, he didn’t seem to be able to reflect back to me as valid the concerns that I kept trying to express. Instead, he would dismiss them, diminish them—no doubt in an effort to be reassuring. But it had just the opposite effect. On Labor Day weekend, as I shared with you all, my frustration at repeatedly trying to make myself heard and understood reached a crisis point.

Bernie Siegel says that it’s important that patients know they can express their anger to their physicians without hurting the relationship (44-45). I didn’t know whether I could or not. But I knew I had to try, because trying to move forward with my cancer treatment under the circumstances that existed was impossible for me to imagine. I called Dr. H. and I let him know how I felt. It wasn’t pretty or pleasant—for either of us.

A few days later I had chemo again, my last dose of the dreaded Adriamycin and Cytoxan (a new drug, Taxol, will come on the 21st). As before every infusion, I had a check-in meeting with Dr. H. to see how things were going. To say that it was a bit strained, after my weekend ourburst, would be an understatement, but Dr. H. rose to the occasion. He seemed to be trying very hard to meet me where I am in my thinking and to validate my concerns about acquiring even the need to manage the risk of lymphedema, much less acquiring the active disease. I appreciated that.

And then he said it.

I had been waiting ten weeks to hear a one-liner that he threw into the conversation. It seemed out of place—somehow gratuitous. It had nothing to do with the topic at hand: lymphedema. It has everything to do with a topic about which I’d made my peace, personally, but which still existed as an issue between us.

“Chemo,” he said, “is toxic.”

He looked pained and uncomfortable when he said it…but he did say it. For the first time. And he didn’t immediately rush on to justify it or explain how wonderful it is that we have chemo today that can address cancer in ways we couldn’t do 30 years ago. He didn’t try to excuse or mitigate its toxicity to me, as if it were no big deal. He just said it. He let the statement lie there between us. I was stunned.

I looked him straight in the eye. “Thank you for that,” I said. “Yes, chemo is very toxic. But it also has great therapeutic value.”

For the first time, I got to be the one to say that. And it felt good.

For the first time, in what felt like a very authentic way to me, I got to own the peace that I have already made with chemo. I didn’t feel pushed by his enthusiasm to deny the truth about the nature of the treatment I am taking under his direct care. We could both agree on the two most important facts about what I am doing: it is highly toxic, and it is nevertheless highly therapeutic.

Now that’s what I call communication.

A day later I wrote an apology to Dr. H. In my great anger with him, I said, I had allowed myself to lose sight of two important areas where he had already demonstrated great sensitivity to where I was coming from. He has worked with me to allow me to take nutritional supplements that go far beyond the Recommended Daily Allowance. And he has not pushed me on the subject of getting a mammogram—a thing I have been very reluctant to do since realizing that I could have this particular kind of invasive, infiltrating cancer.

It was wrong of me, I said, to lose sight of these things, and I apologized. I also thanked him for the great effort he made to make me feel heard at our check-in. It’s a good start, I said, and I hope we can build upon it.

I think maybe we can. Although he may drive me ape-sh*t sometimes (and I suspect the feeling is mutual), he is a good man. He means well. And he knows his stuff. We just have to learn how to work together more effectively.

Working together more effectively does not just mean me getting Dr. H. to deliver more validating messages to me—though goodness knows I don’t want to give up on that score! Working together more effectively also means that I have work to do, myself. I have work to do on my model of the world. It’s hard work for me…a struggle of a whole different kind.

My world has changed; if I am to survive, the model I use to navigate within it must change, too. I am in the process of creating one that more closely matches the new reality I am facing—a new reality that includes the old struggle for survival that I know so well, but that presents it to me in such a different way today.

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Laurence Gonzales’ book Deep Survival is not about having cancer; it’s about people who face extraordinary physical circumstances that threaten their survival, like mountain climbing accidents or being lost at sea—and how they manage to come through it…or fail to. Since cancer is challenging my physical survival and forcing me to take up the question of what that can possibly mean for me now, it sounded like a book I needed to read (thanks to Sandy from Atlanta, an IBC survivor, who turned me on to the book).

Gonzales says that we all have a mental model of the world that governs most of how we behave from day to day. If you have a functionally correct mental model of the world and useful emotional bookmarks that link to previous events in your life, he says, then you don’t have to work too hard to create your behavior in response to everyday events. Your behaviors are pretty much a given. You have an inherent plan for how to respond to given foreseeable situations, and you follow your plan pretty much automatically.

But when you’re confronted with a crisis that challenges your mental model of how the world works, you will only come out a survivor if you can quickly and efficiently update your mental model. This entails evaluating old emotional bookmarks, jettisoning the ones that will no longer serve you well, creating new bookmarks, becoming a very good evaluator of the perceptual information that is coming at you, and revising your plans for how to behave, accordingly.

Because this model updating needs to be done quickly, in reality you’re only making a model of an expected universe—an expected future—based upon your current (possibly faulty, possibly accurate) perceptions and analyses (also possibly faulty or possibly accurate) of what is going on given your rapidly changing circumstances. The point, says Gonzales, is to be able to “slide [forward] through time to a world that does not yet exist” for you (84)—to a world of safety, at a time when the world in which you currently find yourself is one of extreme danger.

But it’s no fantasied, mimsy borogoves world that will keep you alive, in such circumstances. No, it’s a more hard-edged world than that. “Shit happens,” Gonzales quotes a NASA engineer saying after one of the space shuttle accidents, “and if we want to restrict ourselves to things [worlds] where shit can’t happen…we’re not going to do anything very interesting” (113).

Being thrust into Cancer Land is like that. It’s a world where shit has happened and where it will most likely continue to happen in one way or another. For someone who has tried for so long to find a shit-proof world, a mimsy borogove, my induction into being a citizen of this scary land has been hard for me. To know that I must live the rest of my life, more or less, within its confines is scary, too.

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On September 15th a new cancer hospital was dedicated where I receive treatment, and one of the short talks by a speaker left a profound mark on me. This person, Carol, is a researcher at the hospital, a physician, and a patient. Years ago she had cancer and was successfully treated for it. A bright and happy story, right?

Not really. She now has incurable breast cancer as a direct result of the treatment for her original cancer years ago. She is now “living with cancer.” Unless she is killed in an auto accident, this secondary cancer that she acquired as a result of her original treatment will kill her. Palliative care is the best they have to offer her, now. Not cure. Just making her comfortable until she dies of the cancer they gave her.

I was also struck, at the dedication ceremony, with the pictures of “cancer survivors” that they had blown up into 12x24 color glossies and mounted throughout the lobby. Examples of the work done in the cancer treatment program in recent years at the university—but not their most convincing work, I hoped. Because as I looked at the captions on those pictures, I saw that many were of people who had been diagnosed two or three years ago and finished treatment a year ago. These were their “cancer survivors.”

To me, that’s not a real cancer survivor. That’s just someone whose cancer they were able to put into remission for awhile. I suspect they will be able to do the same with me.

To be a real survivor, to me, you have to go five and more years without a recurrence of your cancer—and even longer without acquiring a secondary cancer due to the treatment you received for your first cancer. THAT is what a real cancer survivor is.

If these one- and two-year remissions are the best work they could trot out and put on display for the opening of the new hospital, I see no reason to feel comforted or encouraged at the place where I find myself today.

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I, and millions of people like me, have become residents of Cancer Land, a place called into being and defined by the words “shit happens.” A place where, if you want to survive, old maps of the world no longer apply and new maps of reality have to be constructed pretty darned fast, even if they are not completely accurate new maps.

The maps of the world that people in mountain climbing accidents or people lost at sea have to re-draw for themselves are temporary maps. They are maps that include a projected future of safety, in which the challenges they are facing have been resolved and they have survived. If those new maps help them resolve their immediate crisis—if the mountain climbers make it down the mountain, if the river rafters don’t drown, if the people lost at sea are discovered and saved—there will be yet another map re-drawing as they return to “normal” life.

No doubt these new maps will be richer and fuller reflections of reality, based upon the new emotional bookmarks of the experiences they have just endured. But these new maps will not be the exact same maps that were in use while the mountaineers were stuck in the ice crevasse or while the boaters were stuck at sea—because they are no longer there, and the quickly-devised maps they needed to help them extricate themselves from their predicament are no longer relevant. They have successfully projected themselves into an expected future and found a world of safety once again.

People in Cancer Land cannot do this. The crisis we face is not just immediate, but life long. The expected future we have to prepare new maps to face is one that holds only a tentative promise of safety—for some kinds of cancer, more tentative than for others.

The treatments may not work right now; they may work right now but only to produce a very temporary, short-lived remission; they may not be able to prevent a recurrence of the same cancer many years down the line; or most insulting of all, they may give you a secondary cancer. So we must always, always be vigilant.

Whatever it means for a cancer patient to become a survivor, it’s not the same as for Gonzales’ stranded mountain hikers or capsized sailors. Wilderness enthusiasts may face a sudden crisis that calls upon them to perceive new information clearly, think carefully about what to do, creatively visualize where they need to be, plan wisely how to get there, and then move forward. But within a short time, everyone knows whether they are survivors or not. They are off the mountain, out of the rubber life raft, and back among the rest of the world.

Cancer patients, in a very real sense, never come down off the mountain, because there is not really any safe place for them to get back down to.

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“There are great survivors and helpless victims on the curve of human ability,” writes Gonzales. “Most of us are neither. Most of us fall somewhere in between and may perform poorly at first, then find the inner resources to return to correct action and clear thought” (168).

The first rule of survivorship is to change your mental model of the world so that it conforms more closely with the reality in which you find yourself—not the one you wish for. You must discard the hope of rescue from outside, and settle yourself into dealing, yourself, with the situation as it presents itself to you. “You don’t have to be an elite performer,” he explains. “You don’t have to be perfect. You just have to get on with it and do the next right thing” (169).

I don’t know for sure what the next right thing is. But I am trying very hard to adjust my mental map, and I’m trying hard to just get on with it.

It’s not easy. And I am very afraid.

Fortunately, being afraid does not disqualify you from being a survivor. In fact, it can give you the energy to focus your will, to make new mental maps of the world as often as necessary, to make a plan for survival, to be open to changing that plan at a moment’s notice as conditions around you change so that you can do the next right thing.

Whatever it might be.

Whatever it is, one thing is certain. As my friend Judith pointed out, my survival is once again at risk because of a breast.

Maybe it’s just a coincidence, but it seems possible to me that I’m being given an opportunity, here—or more likely forced, here—to re-draw my newborn’s mental map of the world. Like my breast, it has to go.

I’m not sure yet what will replace it, because I have cancer, and when you have cancer, even if you’re a survivor, you never quite come down off that mountain to a safe place once again.

As if there ever really were such a thing.

I guess it’s about time I learn to deal with that reality instead of wishing for something that doesn’t exist. But, Lord, this is a hard, hard lesson to learn.