The title comes from an essay by Stephen Jay Gould which I link here. Don’t feel obligated to read it immediately, since I’m going to quote from it at length. Hat tip to my good friend Meter who sent this gem to me.
Jing has a theory that biologists handle cancer better than the general population since we are better trained to understand the details of the disease, the relevant statistics, and the mechanisms by which treatments work. In support of this theory, I offer the examples of Ben Williams (honorary biologist) and Cheryl Broyles, two of my heroes in the long cold war against brain tumors. I’m happy to add another more recent example: one of the PhD students on whose committee I serve was diagnosed with non-Hodgkin’s Lymphoma a few months after my diagnosis (it’s been a hard year for our department). I’m over-joyed to say that he’s responded to treatment extremely well and recently had a clean PET scan. A victory worth celebrating for certain.
To this happy club, I can now add iconic evolutionary biologist, Stephen Jay Gould, who was diagnosed with abdominal mesothelioma at the age of 40, and was given a prognosis of about 8 months. To cut to the chase, he lived another 20 years instead, and proved to be one of the most influential intellectuals of the last century, even landing himself a small role on The Simpsons.
I’ve read his essay about his experience four times now, and every time I get chills about how similar his approach to cancer was to mine.
After recovering from surgery, Gould immediately went to Harvard Medical School’s Countway library (where I have spent many toilsome hours myself) to read the relevant literature on his disease. He did this despite his oncologist’s recommendation against reading the primary literature.
Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens
I have to agree that my oncologist was similarly critical of me reading the primary literature. I’m a bit of a hypocrite on this score, since I recommended against reading anything to do with prognosis when I talked with the student I mentioned above, but I’ve read my own prognosis in a dozen or more different papers.
The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that’s why they didn’t give me anything to read. Then my mind started to work again, thank goodness.
Similarly, when I read for the dozenth time that glioma are incurable, I also sat stunned for quite some time. It ruined my plans for the afternoon, you can be sure. I’ll tip my hat to Gould here; it took me days before my mind started working again, while he claims to have bounced back in 15 short minutes. In my defense, I was measurably impaired by the recent craniotomy, so maybe it isn’t a completely fair comparison.
If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.
Here’s the one place in Gould’s essay where we’re of different minds. I’m sure that some aspects of personality cannot be constructed from scratch in a crisis, such as a disciplined mind and will to live. But, I strongly believe that optimism/pessimism is a choice, and that making the right choice when faced with cancer can make all the difference in the world.
But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently – and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.
When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.
Happily every prognostic factor I can’t control — age, tumor genetics, quality of my surgery — is favorable in my case, and the prognostic factors I can control — diet, lifestyle, outlook, etc., I’ve endeavored to make as favorable as possible.
I would have time to think, to plan, and to fight.
F’ing A brother. F’ing A.
One final point about statistical distributions. They apply only to a prescribed set of circumstances – in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.
There are many experimental treatments for brain tumors, and many look very promising. None have trickled down to low-grade gliomas yet; they need to prove their worth with the high-grade bastards first. But, I’m stunned at how quickly this field is moving and extremely optimistic that better therapies will be onto their second or third generations before ever I need them. Let’s hope that the ‘prescribed set of circumstances’ upon which glioma stats are based will be well out-of-date in as little as a few months or years.
It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die – and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy – and I find nothing reproachable in those who rage mightily against the dying of the light.
Dylan Thomas is the other reason to be transcendingly pleased to be Welsh. F’ing A brother: “Rage Rage Against the Dying of the Light”.
Gould did indeed succumb to cancer, but 20 years after his diagnosis, and to an independent tumor. The few people I’ve shown this essay to (myself included) generally say: “wow, I didn’t know he had had cancer so young”. That sounds like an enviable outcome to me. Damned good, indeed.