The Stacey Report

October 22, 2006: A Little Light Reading…

Posted in Uncategorized by ohthatdeb on October 22, 2006

Actually, I’m considering assigning this as required reading for all Stacey Report telepaths (you know who you are: when test results impend, you pray or cross your fingers or buy flowers or do whatever it is you do to participate in building this bulwark).

Stephen Jay Gould. Sigh. If you are involved in any branch of the sciences, you have probably read one or another of his many (many many) essays on evolutionary biology or other topics. If you studied writing or composition, you have probably also read one or another of the same essays because the man was a blessed genius of a writer.

He was also, in 1982, diagnosed with a rare, nasty, and terminal form of stomach cancer. Median lifespan after diagnosis: eight months. When it looked like he would beat that time after an experimental course of treatment, he wrote a column for Discovery magazine called “The Median is not the Message.” He then proceeded to live another twenty years, so there.

I cannot ever mention Steven Jay Gould without also telling this story: I was first introduced to Mr. Gould’s essays in a composition course, and brought it to show to my father because I thought he would enjoy the writing.

“Hey, have you ever heard of this guy, Steven Jay Gould?”

“Steven Jay Gould… the baritone?”

Yes, apparently, Steven Jay Gould the baritone: he and my father (and my mother, and my stepmother (but not my stepfather)) were in the Handel and Hayden Society together years ago. Context, huh? Amazing how the frame changes the picture.

(That part about my stepfather is really really funny to just a very few people… sorry about that. For the rest of you I will explain that my stepfather has many talents, but let’s just say you might want to skip his turn on karaoke night.)

So anyway, in the tradition of ripping off other people’s stuff (in this case CancerGuide, a lovely site good enough to provide this essay to all and sundry) and of not making you click on stuff unless you want to (because I know you probably won’t) I present here for your reading pleasure the full text of The Median Isn’t the Message, which should be subtitled “Why Stacey doesn’t ask them for numbers anymore because she’s already heard all the numbers they have and she already knows that they stink and they don’t have anything to do with her anyway.”

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 .

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October 19, 2006: News Flash! Stacey Rocks!

Posted in Uncategorized by ohthatdeb on October 20, 2006

OK, kids, we have the report back from the tests and the news yet again is goodie goodie good good GOOD! The official result of the PET/CT scan is “complete resolution of bone and liver mets.” That’s medical talk for “Stacey Rocks!”

There was one glitch, which TFDB seems to think is an anomaly: there were some positive results at the breast site, so Stacey is going in for an appointment on Tuesday to have that checked out. TFDB does not seem too worried, and really the liver and bone are the bigger deal.

So, more dances for joy! Oh, frabjuous day!

October 13, 2006: We’re on a Carousel, a Crazy Carousel…

Posted in Uncategorized by ohthatdeb on October 13, 2006

Jacques Brel may be alive and well and living in Paris, but in Massachusetts here we go around and up again around and down again around… we have been quite confused. Stacey went in to see the radiation oncologist… and I am sorry to say that this gal does not get an F for fabulous. Gotta be honest here on the Stacet Report. First of all, she had a weak handshake. Now, that’s points off right there, I don’t care who you are or what you have to say. Then there was the bedside, or deskside, manner when she matter-of-factly informed Stacey that “it was decided” that Stacey wouldn’t be having radiation.

Now, as we here on the report know, Stacey is all about the cancer-cell massacre. Kill ’em all dead, then kill ’em again just to be sure! Stacey wasn’t sure whether this gal thought that she would be happy enough to be skipping radiation not to ask questions, or that Stacey would be satisfied with “it was decided” as an explanation (snort snort) but she seemed sort of flummoxed when Stacey wanted an explanation of why she wouldn’t be getting the radiation treatment. As far as she knew, the point of the radiation was to kill off any free-floating cancer baddies so that they couldn’t start congregating, right? And this sounded like a good idea, right? Right.

OK, in her defense, in a later appointment TFDJ explained that Radiation Oncologists are really mathematicians, not so much people people. It’s all statistics and percentages: that’s her job and we’re glad she’s good at it. But that means that when Stacey asked why she wasn’t getting radiation treatment, the answer “because your cancer has already metastatized” seemed like a really good one. But of course, Stacey went around and around with her asking why metastatized cancer would be treated differently, Stacey getting more and more upset as she got answers like “Because your breast isn’t your biggest problem.”  Oh, that’s comforting!  The best moment came when the doctor said “Well, if we radiated the breast we might as well radiate the hip and liver, too!” to which Stacey replied, of course, “OK.”  The doctor gave a little laugh at that, but as we know, Stacey was quite serious: I want you to kill all my cancer, and you are not explaining why you won’t do that; you’re acting like you think I’m a goner and that’s an attitude I will not accept.

Realizing that she wasn’t going to get anything more, Stacey said ” Well, thank you very much for your time.”  The doctor, sensing that Stacey wasn’t happy, said that she would have TFDB call her.  This was very astute.

TFDB did call, and because she left a message she wasn’t really able to answer the question much more clearly then, but did in a follow-up appointment.  Basically, radiation therapy is not a walk in the park, and there is only so much of it the body can take.  Stacey’s medical staff got together and decided that because she responded so well to the chemotherapy, there was a reasonable chance that the chemo had killed all the cancer.  If it did, and they went ahead with the radiation, she’d be going through that for nothing.  If it did, and they went ahead with the radiation, and then (because this is a sneaky kind of cancer) it shows up somewhere else later on, they wouldn’t be able to give her more radiation because she would already have had it.  If it didn’t, the chances are good that the biggest problem would be the liver, not the breast, so they want to save the big guns for that and see what happens.

See?  Now would that have been so hard?

Anyway, to get as much information as possible right now, Stacey is having a PET/CT scan today.  She also reported some shortness of breath, which both she and TFDB attribute to the medication she is taking, but the scans will also be looking at her lungs just to be on the safe side.  We have no idea when or whether any useful information will be reported from these tests, but we’ll keep you posted.

In the meantime, TFDB changed Stacey’s Zometa to every six weeks to better fit with the three-week Herceptin schedule.  Also there is some lovely downy blonde fuzz growing in — it isn’t long enough to be called a hairstyle yet, so Stacey is still sporting her lovely Can’t Fail scarves designed by Mary Ann Weiss at CJ Hats, where you should go for all your chemo cap needs! (That’s not a hint for a Stacey gift, just a shameless plug because we like Mary Ann and the Can’t Fail scarf is the BEST!)

More news as soon as we have some, and just a reminder: you will hear it here first, we promise! If it isn’t on the blog, you can safely assume that Stacey hasn’t heard anything yet.

October 3, 2006: Dude, Where’s My Cancer?

Posted in Uncategorized by ohthatdeb on October 3, 2006

So… the pathology report is in, although apparently we needn’t have bothered. The samples of breast tissue taken from the lumpectapalooza site — you know, that pesky spot where there was all that cancer stuff before? — showed ABSOLUTELY NOTHING. No cancer at all.  At ALL.  Well, it’s possible that there are a few lonely little cancer cells wandering around in there — “Hello? Hellooooo? Hey you guys? No kidding, this isn’t funny guys!” — but the path report shows quite clearly that there are no rallies, barbeques, or other hoppin’ social events going on there.

So what about the lymph nodes?  Well what about the lymph nodes, they’d like to know, as all thirteen of them stand there, hands on hips, tapping their lymphy little toes in irritation.  You yanked all of us out of there and did you find any cancer in any of us?  No you did not: not one bit of cancer in any one of us.  Healthy as horses we are, but can you put us back in there, oh noooooo…

So what about the liver?  And what about the hip bones?  Well, we don’t really know.  As TFDB said earlier, doing a scan of Stacey’s hip wouldn’t really tell us anything because it would show damaged bone: because bone heals so slowly, it would look the same whether it was healing or deteriorating.  For the diagnosis there, they generally go by the level of pain the bone-owner is having, and Stacey is having none.  Which is good news.

I don’t really have a clear idea about what the next steps are for the liver — I need to check with Stacey whether they’re going to do a separate scan of that (although she has probably told me already and I don’t remember…)  but I do know that there is no swelling and no pain, and that Stacey’s liver function is completely normal (as it has been all along) so all that can be nothing but good.

So, what happened?  Well, I think that’s pretty clear… Stacey kicked the soup out of it and threw it off the porch.  And no, she’s not done with it — there will be more treatment, including radiation therapy to kill off the ronin cells, and hormone therapy basically forever, and who knows what all else.  And Stacey’s Sister still has quite the bone to pick with IBC, thank you very much.  And we all know that it might come back.

But we don’t want to think about that today.  Today is absolutely the perfect weather for such news — bright and sunny and 80 here in Massachusetts, “unseasonably warm” they like to call it.  So everybody go out and play, jump up and down, make up a little song called “Stacey Rocks!”

October 2, 2006: All is Well, No News

Posted in Uncategorized by ohthatdeb on October 2, 2006

Ok, poll: is the word “news” officially plural? So for example which of the following is hypercorrect (which is to say, not just correct in casual speech, but in its formal definition?)

a) Are there any news?
b) Is there any news?

It seems to me that this question came up very much by the way (as it would) in discussion some time ago and was quickly put to rest, and I could easily look up the answer on this here Internet thingie, but why do that when I could ask y’all?

In any case, neither is there nor are there any news, lab results-wise, that is. Nor any news about when we can expect such results.

However, all is well in terms of surgery recovery. In the course of a neighborhood walk, we stopped at the Stacey abode and spoke with all and sundry for several minutes before I even remembered about the surgery. This is embarassing to relate, as it reveals a certain level of sociopathy on my part, but I relate it because it also shows how completely normal Stacey looked and seemed. At a check in with TFDC at the end of last week, TFDC removed the drains (eew) and pronounced her satisfaction with the healing of the incision. With a bra and shirt on, looking at Stacey, you really would never know at all. Thinking back, she might have looked a little washed out, but other than that she seemed quite well indeed.

So… how’s everything with you? The kids? Weather good? Honestly, knock wood, nothing much doing here. Which, believe me, is perfectly all right with your humble authorette.