Since we published Never Tell Me The Odds: One Man, One Disease, One Battle, many industry members have been kind enough to inquire how the Pundit Poppa is doing and how the whole family is holding up. We are appreciative of every inquiry and thankful for so many useful and supportive missives.
My father’s cancer is considered inoperable unless the tumor was to shrink substantially. So the specific medical answer to what are we doing is that we have undertaken chemotherapy and have been fortunate to do so with the advice of Pundit readers such as Virginia Morton of Tallman Family Farms, who sent us her Tips on Chemotherapy.
Since there is no known cure for pancreatic cancer, our chemotherapy is best understood as an effort to move my father out on the “long tail” of the statistical curb of survival. This doesn’t mean we don’t seek a cure; it means a change in the way we think about a cure. After all, if one can keep pushing oneself out on the curve by 30 days at a time, one lives forever. Put another way, the goal is to live long enough for someone to discover a cure.
Ray Kurzweil — whose diet book we wrote about years ago in sister publication PRODUCE BUSINESS, in a piece called The Ten Percent Solution — says we all should be taking great care of our health because in the not-so-distant future they will inject us each with nanobots that will repair our ills, and this synergy of man and machine will help us live forever.
Our focus on the long tail came about due to a letter from a Pundit reader. He got us thinking about the long tail by sending us an attachment with an article by a prominent scientist:
My thoughts are with your father and your family. A close friend of mine sent me the above attachment. It helped me put things into perspective. I hope it helps you too. By the way, my close friend was diagnosed with cancer back in 2006. He is alive today enjoying life.
— Peter F. Hochschild
Cal Pine Distributors, LP
We are, of course, glad for Peter’s friend and most appreciative for the piece he sent. He sent us an article titled, The Median Isn’t the Message by Stephen Jay Gould, who had been a Harvard-based paleontologist and evolutionary biologist.
The inspiring part of the story is that Professor Gould was diagnosed at age 40 with abdominal mesothelioma. The research at the time indicated a median mortality of only eight months after diagnosis. In fact, Professor Gould lived 20 years after his diagnosis and was in good health for most of that, good enough to write his 1,342-page synthesis of his theories: The Structure of Evolutionary Theory. He ultimately died of what was believed to be an unrelated cancer.
The more important part of this article is that it provides guidance — to cancer patients and everyone else — as to how to think about statistics:
This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.
In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos…
…The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery…
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.
Hence the dilemma for humane doctors: since attitude matters so critically, should such a somber conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge — and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon’s proverb.
The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months” — the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much.
I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.”
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.
Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out — left skewed if extended to the left, right skewed if stretched out to the right.)
The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn’t much room for the distribution’s lower (or left) half — it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran — for I had already concluded that my favorable profile made me a good candidate for that part of the curve.
The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances — substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah — set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.
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.
It is an invaluable piece and anyone being given a life expectancy ought to read the whole thing.
Some of the things Stephen Jay Gould mentioned are issues we have discussed publically in pieces such as Dr. Sloan Misses The Point: A Fighting Spirit Is Vital In Overcoming Illness and Pundit’s Mailbag — Fighting Spirit And The Challenge To Live.
We have also wrestled with other questions Professor Gould raised, such as how much truth-telling a doctor ought to do. In our initial piece, we lashed out in anger at my father’s primary care physician who held back on giving us the diagnosis so we could enjoy the weekend. We said “…it wasn’t her information to conceal.”
Yet, perhaps we were too hasty. Later on we had an exchange with Marion Nestle, the well known author and academic whose exchanges with the Pundit we have highlighted here, here, here, and here. Marion was kind enough to send a note of good wishes:
I’m so sorry to hear this about your father. It’s wonderful that you care about him so much and that must mean a lot to him. Take comfort in that, if you can. Courage! And all my best wishes.
Paulette Goddard Professor of Nutrition, Food Studies and Public Health
Steinhardt School of Culture, Education and Human Development
New York University
I responded to this noted expert on nutrition by pointing out the many odd nutritional therapies people had been sending us. Marion, though, responded with a focus on people’s emotional needs, she said: “I think people need to feel hope when confronting mortality, and if herbal teas will do that, I’m not one to object. Courage!”
Indeed, when asked about whether it would be OK for my father to exercise, one of my father’s doctors responded by saying, “Absolutely, as much as you are able. In fact, exercise is very good as the tumor draws nutrients from your body, and if you can build muscle mass, the nutrients go to build the muscle and are not available to the tumor.”
Now I sat silently as the doctor said this. Exercise is undoubtedly a good thing for my father and losing muscle mass can be a big problem for cancer patients, but I found this theory of tumor nutrition idiosyncratic to say the least. Yet I decided to stay silent and was glad I did as it transformed my father’s attitude. He began an exercise program and felt that between exercise and the chemotherapy he would yet beat this cancer. He would run on the treadmill and loudly sing: “Mr. Tumor, what do you want for breakfast today? What do you want for lunch? What do you want for dinner? Sorry, we are not serving! The restaurant is closed!”
Other doctors have since been more moderate in their claims for exercise and, as time goes by, my father is finding it more challenging to exercise, but I understand why when I told Marion Nestle this story she responded by saying that I was smart to keep my mouth shut and that my father was lucky to have a doctor that smart.
Of course, my father is very smart and knows how to use the Internet, so any obfuscation is going to be short-lived.
So while we handle the medical stuff, my focus on keeping my father’s fighting spirit raging is to provide him with reminders of how much he has to fight for.
In mid-March, I celebrated my 50th birthday and my parents wanted to treat for a big birthday party. My father’s 75th birthday will, God willing, come in June, so I suggested to my mother that we transform this party into a roast/toast, tribute and early birthday for my father.
Although it was all put together last minute, we still had 200 people for a sit down dinner at my house and 250 for cocktails. It was all themed around the 1950’s and for the sit down dinner, we recreated the Copacabana of 1954, where my parents had their high school prom.
It was, of course, all family and friends. We only invited people who had some special connection with my father. So we were so appreciative that some of our friends from the produce industry managed to be there: Jim Carr, President of the Produce Reporter Company, and his wife, Laura; Michael Cutler, President of Michael Cutler Company, and his wife, Sheila; Alan Siger, President of Consumers Produce; Mayda Sotomayor-Kirk, President of Seald-Sweet, and her husband, Mark; and Tom Stenzel, President of United Fresh Produce Association.
It was also a special treat that my father’s long ago partner, Barney Mayrsohn, now CEO of Mayrsohn International Trading Company, was there to toast my dad.
The icing on the cake, though, was when Tim and Jan Fleming made the trip down from Chicago. We’ve mentioned Jan’s own health travails here, here, here and here. The world works in mysterious ways, and it has come to pass that my father and Jan Fleming are on the precise same chemo regimen and even receive chemo on the same day. So, though the connection between our family companies went back a long way and, of course, Jan’s father, Bob Strube, was our first columnist in PRODUCE BUSINESS, a new and special kind of connection has been established in this time of trial.
Planning a party when the star is sick is always nerve-wracking. What if my father had been having a bad day and couldn’t come? These are always worries.
In the end though, my family and I thought it important that while we have life, we ought to live, and we wanted to show my father that many people, from around the world and back from each phase of his life — high school, college, business, family, friends — cared about him and wanted to cheer him on.
We did that and, as Stephen Jay Gould would have predicted, we saw my father and mother draw strength from that infusion of love.
We have many powerful medicines, none more powerful than the force of true love.
It is our efforts to give my father that medicine that best explains what we are doing now. Many thanks to all those who have helped in that task.
If you wish to send my father a note, you may do so here.
If you have ideas or contacts for medical treatment, please send me a note here.