Saturday, April 9, 2016

Cancer and paternalism: a postscript

My post a couple of weeks ago on “Cancer and paternalism” discussed what Paul Kalanithi’s doctor said to him about survival rates, and why, and two readers of that post asked, essentially, “what about you” – what have my doctor and I said to each other?

Kalanithi asked to talk with his doctor about survival data; I’ve never asked that question. What I’ve asked is whether I could make a commitment to carry out a work project. The first time I asked that question, in December 2015, the doctors declined to answer, and in hindsight I believe that was because at that point they were worried that I might be in a perilous decline. By late January 2016, however, it was clear that I had pulled out of that decline; even while in the midst of chemotherapy, I was visibly healthier than I had been at the start of my treatment. My oncologist concluded, even before the February CT scan, that I was not only tolerating the chemotherapy well but actually beating back the cancer, and told me that I could commit to the two-year project I’m now at work on, writing Arthur Chaskalson’s biography.

Why haven’t I asked for a prognosis? Because I haven’t felt it would help me fight my illness or to live my life. I knew from very early on that the statistics for liver cancer are not good; what I’ve aimed for, always, is to wind up on the right side of those statistics. Saying you want to be on the “right side of” something is a figure of speech, but actually it’s the right phrase statistically too, as Stephen Jay Gould pointed out years ago. A graph of length of survival, beginning on the left with zero and ending at whatever the final endpoint is, will naturally stretch out towards the right – unless everyone dies at once, which fortunately is not at all the case with cholangiocarcinoma – and I want to be way out on the right side of this curve. The doctors can’t know if that will happen or not, and it seems to me that my mental focus should always be on seeking to live, rather than on worrying about not succeeding. I’m also certain that seeking to live is not just about surviving but about living each day happily and fully, and I want to focus my energy on doing that.

Homer tells the story of Ulysses having himself bound to a mast, from which his sailors are forbidden to release him, so that he can hear the music of the Sirens and live. That’s a form of self-paternalism, but it isn’t what I’ve done. I want to understand the treatment possibilities that may be available, so along with Teresa I’ve been learning about cholangiocarcinoma and the expanding range of medical responses to it. The studies and talks I’ve looked at describe the likely outcomes clearly, and Teresa and I discuss them carefully. So I am not hiding from knowledge. What I am doing is, as well as I can, directing my attention to life.

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