Blogging in B Minor

I’ve spent a number of posts speaking of statistics and attitude. I think every brain tumor survivor – and cancer survivor for that matter should give “The Median Isn’t the Message” a good read. The prefatory note by Steve Dunn says a lot about this piece of writing in one sentence: “It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis.”

The Median Isn’t the Message

Prefatory Note by Steve Dunn

Stephen Jay Gould was an influential evolutionary biologist who taught at Harvard University. He was the author of at least ten popular books on evolution, and science, including, among others, The Flamingo’s Smile, The Mismeasure of Man, Wonderful Life, and Full House.

As far as I’m concerned, Gould’s The Median Isn’t the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn’t the Message is reproduced here by permission of the author.

The Median Isn’t the Message

by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before – lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers – a case quite relevant to my story. Statistics recognizes different measures of an “average,” or central tendency. The mean is our usual concept of an overall average – add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, “The mean income of our citizens is $15,000 per year.” The leader of the opposition might retort, “But half our citizens make less than $10,000 per year.” Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more “real” and the only proper basis for action – if it feels good, do it – while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, “Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death.”

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. When I revived after surgery, I asked my first question of my doctor and chemotherapist: “What is the best technical literature about mesothelioma?” She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard’s Countway medical library and punched mesothelioma into the computer’s bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. 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.

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 sombre 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.” The point is a subtle one, but profound – for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months” may pass as a reasonable interpretation.

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.

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 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.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn’t expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain’s most famous line of all: the reports of my death are greatly exaggerated.

Postscript By Steve Dunn

Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn’t mesothelioma, but a second and unrelated cancer.

In March 2002, Dr. Gould published his 1342 page “Magnum Opus”, The Structure of Evolutionary Theory. It is fitting that Gould, one of the world’s most prolific scientists and writers, was able to complete the definitive statement of his scientific work and philosophy just in time. That text is far too long and dense for almost any layman – but the works of Stephen Jay Gould will live on. Especially I hope, The Median Isn’t The Message .

© Stephen Jay Gould

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Anyone who is brain tumor survivor has been on a winding, bumpy road – and this putting it mildly for many of us. I was reflecting on what I have learned so far after having a seizure followed by the discovery of an abnormality in my brain. This led to a diagnosis followed by my craniotomy, a grade 3 oligoastrocytoma, IMRT radiation and concurrent chemotherapy followed by monthly cycles of chemotherapy.

I have learned a number of very important lessons and principles:

1. Purpose - There is a reason this is happening. It’s not about “why me”. It’s about “why not me” and that this is an opportunity for me to turn this into a positive. I look at life ever so slightly different today. This blog helps me give back to other survivors who are on this journey. My kids and my wife – I cherish the small things in life – the simple things. I ratcheted down my expectations and for me this was wonderful. My career and everything else that sometimes took center-stage is not center-stage. I am a lot more judicious in terms of how and where I spend my time.
2. Paralysis of Analysis - I don’t over-analyize my condition. In the beginning, I did a ton of research and it was absolutely necessary. I encourage everyone – and I mean everyone to do research. There are several books that I read that changed me. One is by Dr. Peter Black at Harvard. I was fortunate enough to have him review my case – along with Dr. Mitchel Berger at UCSF who both agreed with surgery followed by Temodar. His book Living with a Brain Tumor is excellent. There are other books I think everyone should avail themselves to. There is a post on my blog that lists the books I read from cover to cover if you wish to look. My personal recommendation though, at least for me, was not to order so many books that I was innundated with material. I was already innundated with professional opinions. The natural tendency, particulary for those of us who are problem-solvers, is to dive in and learn as much as possible. I did. I think you need to know enough to be your own advocate and have intelligent discussions with all of the professionals and if put something on the table that is questionable – you can ask the questions.
3. Get Organized – It was extremely important for me to get organized. I created a binder. The front of the binder has CD holders – the plastic pages that hold 6 CDs to a page (to hold MRI CDs), a few sheets of business card holders (and a page for family contacts in case health care professionals had the binder) and tabs for the following: surgical history, prescription history/information, pathology reports, MRI reports, dictations (ask your doctor for these – they are usually available 5-7 days after your visits!), seizure logs, chemo/radiation calendar & schedule, diet documentation and research docs. I ended up moving all the research docs to a separate binder (printouts from internet research) as it got to be a lot. The point here is you are organized and have everything in one place. I had to go to the ER once for a significant seizure. I had my wife bring the binder. Instead of her having to recall everything, she just handed them the binder. Nice! Same thing later – it’s all up date, all of MRI scans are in there, medication I’m taking, surgery reports – it’s all there. Get organized. This is more important than any college class, a thesis – anything that we’ve ever done in our lives so it obviously deserves the hours or days it takes to make spin like a top.
4. Address the Feelings / Get Professional Help - For me, I went and saw someone (a PhD) to just talk about what I was/am going through. This was key. It’s not that anyone is going crazy here. This is a heap of trauma to be thrown on anyone’s lap. Do what you need to do to deal with it! I went through the emotions. It’s not easy but it’s necessary to deal with that component. I had hard days and hard nights in the beginning. Having all of this laid out for you is difficult and for me, if I just stuffed it down, played the tough guy – whatever you want to call it or whatever tactic you want to employ, it would just come back later. So, I dealt with it. Do I still have some difficult times – sure – but I am equipped to deal with them because I’ve addressed this and those times are fewer and further between and I still have this outlet.  I’m living life.
5. Don’t Turn Down Help! I think all of us, at some level, don’t like to “burden” people. People offer help and many of us say we’re “ok” and “don’t worry about it.” I know my wife and I are like that. Well, when this was all going on and friends and family wanted to help out, we started taking them up on it! It’s important and it really really helped. We were actually in a position where we couldn’t say no. For those of you who have read the blog back in late June and July of 2007, my craniotomy was followed by Rachael’s emergency c-section delivery of Keegan 2 weeks later. Yes, we needed help!
6. Stay in Today – I’ve posted about this and this is key for me. As a brain tumor survivor it’s so easy to become mired in tomorrow. This is dangerous ground for me because then I start clouding my head with the uncertainty of my condition, etc. The fact is, for every one of us in the world, we don’t know what tomorrow holds. I could pass away from something besides my brain tumor for all I know! So, it makes no sense to worry about tomorrow. Someone once told me that if I’m living in yesterday I’m regretful, if I’m living in tomorrow I’m anxious but if I’m living in today life must be ok and certainly I’m present to experience life in the moment. Sounds good to me!
7. Statistics are Meaningless – Anyone who shoves stats in my face – well, I don’t pay attention to them. As I mentioned in a post or two, I looked at stats purely from the standpoint of doing some estate planning which is the responsible thing for any father of two / husband to do. Other than that – who cares. Living life today – that’s the name of the game.
8. Get Involved! Build a blog and share your story (CarePages is a place you can do this and you don’t have to know anything about web design), get in touch with the National Brain Tumor Foundation – they have ways to get involved. There are a series of walks scheduled – one is in San Francisco. Volunteer. Giving back makes you feel good and takes the focus off of yourself.

There is a lot more that I have learned and I am sure you have learned a lot as well. I just thought I would throw some things up here that have really helped me since this all started for me back in December of 2006.

Best,

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