Monday, April 23, 2012

Stephen Jay Gould and the long tail

When my melanoma went metastatic more than two years ago, I didn’t need my oncologist to tell me how long patients like me typically lived. I already knew, and it wasn’t much. He told me anyway, probably figuring this was part of his job: to keep things real. I don’t recall whether I shrugged or slumped. What I do remember is booking a flight to Kauai within days, figuring he might be right. Ellen and I went on an adventure that we feared might be our last together.
Gould's famous essay has
become a source of comfort
for many cancer patients,
deservedly or not.

I’ve since blown past the AJCC averages, which has been a pleasant surprise. I may not have beaten the cancer and likely never will, in the sense that recurrence is an ever-present reality. But my short-term survival is no longer in doubt. I have adopted an attitude these days that either the cancer will come back or it won’t. For someone as quantitatively oriented as I am, this is something of a breakthrough. I’ve thrown out the stats charts.

Probabilities are still in play, of course. The data collected by cancer centers across the country form a database that’s hard to argue logically against. I suspect that both my surgeon and my oncologist could tell me from experience how much longer they think I might live, and what disease progression looks like for an outlier like myself. My case is not unprecedented. But I haven’t brought any of this stuff up with them for months, and remain disinclined to do so.
In his 1985 essay, “The Median Isn’t the Message” the renowned paleontologist Stephen Jay Gould described the solace he felt after he learned he had a deadly cancer when he saw in the statistics that a few people actually lived a very long time, even though most with his diagnosis succumbed rapidly.

He decided at that moment to be one of the rare ones; put scientifically, he planned to be in the tail of the distribution. It’s a remarkable essay by one of the great scientists and science writers of our era. And he was prescient. Gould lived another 17 years after publishing it. He beat the odds.
What’s surprising about this is that a MacArthur Foundation “genius” like him would choose to actively delude himself. He had no scientific basis on which to conclude he would survive; he simply declared that he would. Writing on his cancer blog at, Dr. Peter B. Bach has said this about Gould: “Only in Lake Wobegone can everyone be reliably above average, and there’s merit to being realistic.” Bach thinks that “hoping for the best” is a dumb plan for a cancer patient, which in his case involves the care of a wife with advanced breast cancer. He’s clearly a numbers guy, like I used to be.

As did Gould, I’m living in the long tail. I didn’t get there by any special merit and I don’t wear rose-colored glasses. I don’t believe in magic. Some people with metastatic melanoma live more than five years after their diagnosis, and a few even make it to 10. There are a handful who, having been treated with interleukin-2, have been declared “cured.” I’m at 28 months and counting. I will either remain NED or I won’t. It’s nice to have something so simple to believe in.
The choices I make in life are informed by my health status, but not dictated by it. I remain as fully aware of my own existence as a person can be, and am blessed for it. My days are filled with joy. Cancer survival statistics, on the other hand, are stone cold and over time unmercifully accurate. No one knows which side of the ledger one is on at any given moment, however. For now, I’m alive and well and happily deluded. I am free from slavish devotion to mere numbers. Stephen Jay Gould is my inspiration for living in the long tail.


Paul and Karen said...

Just want you to know I'm reading your blog and always appreciate what you have to say.

nancy said...

Good words, dear friend. Your words are always inspiring, and your positive attitude and determination to live in the moment surely contribute to your position on the long tail. Keep writing, running and moving forward.

RBS said...

Peter i love the depth and thoughtfulness of your thinking. I've been diagnosed with an occurrence or recurrence of cancer 6 times, Prostate - initial and 2 recurrences, that one just kind of pokes along at almost indolent velocity, and then my initial melanoma dx in 1995, secondary and most recent wasn't till this last one that has metastasized to my lungs that i really began factoring in the probability of shortened longevity. this from a guy with a tour and half in Vietnam, and a few other highlights in my life that should have me fully aware of my mortality. it's amazing what it takes to get my full attention. i'm just now headed into week 3 of Zelboraf, have had most of the usual aide effects and a URI. this time i'm trying to move more toward believing i could be one of those outliers that baffles the doc's

I always love coming here to read what you've written. and i always finish thinking that i'm very glad you're writing. thanks Ron

grsmouse said...

I remember a phrase from the past (remember I'm an old man) VICTORIOUS CHRISTIAN LIVING....seems you might be there...always a blessing to read this blog

Tom Hess said...

Well-reasoned and written, as always, and with humility.