It's far too early to know for certain - that scan won't be until December - but I still think it's working. During our last few conversations, Dad has been much more himself than he has was over the summer. All fired up. Full of piss-n-vinegar. Talking an unbelievable amount of trash about my ability to ski (bring it on, old man). Having more than a little bit of fun at my expense. Example: I called the house in search of advice on how to make a good (read: edible) pork gravy. Those of you who know me know I don't / can't / won't cook under normal circumstances, but I'm pregnant now and feeling like a bit of a failure in the whole wife/mother department, so I cooked a pork roast. Which I managed not to destroy. But when I took the roast out of the pan, there was all this... stuff... in the bottom. And I vaguely remembered seeing people on the Food Network stir the stuff over heat to make gravy. But beyond that, I was lost. So I did what any self-sufficient, married mother of one and a half children does. I called home.
"Talk to your father," Mom said (once she'd gotten over the shock of hearing me say I'd applied heat to raw ingredients thereby rendering them cooked). "He's the gravy man."
"Gravy?" Dad said when he got on the phone. "Sure. That's easy. Spoon off the fat. Put the drippings over heat. Add some flour. That makes gravy."
"Sounds easy enough," I said.
"Oh, there are a bunch of other things you have to do, but I'm sure you can figure that out on your own."
Waitaminute...
He was far too amused by himself to answer me when I tried to ask if cornstarch, corn meal and flour are interchangeable with it comes to gravy (answer: they're not - but I had to Google it). I think he was getting back at me for having paid for an education that left me able to interpret subtle nuances in the works of William Shakespeare but unable to prepare a simple pork gravy. And yes, he hung up without further elaboration, leaving me with my bewilderment and my naked pork roast.
Hence, I think he's feeling better. He's off from chemo this week and working crazy long hours, I think because he's covering for Dr. T, who is out of the hospital but unable to do so much as walk his dog without sending those around him into hysterics about his heart. Dad is also making plans for a trip to Charleston (Oberles of Charleston - consider yourselves warned) and is looking at vacation options for the spring. So all in all, things seem to be going quite well.
I want to take a moment to thank all the people who sent in book suggestions. Please keep them coming! Mom is already through "Sit, Ubu, Sit" and Dad won't be far behind.
I also want to post the text of an article that Laura mentioned in her comment to my last post. It's about certain cancer-fighting foods. As Laura said, it's useful information for Dad, but it's also useful for all of us to know. I've boiled down the basics below:
The article was written by Dr. David Servan-Schreiber, who has been living with cancer (both in and out of remission) for years. He broke down his suggestions into food groupings and I've chosen to do the same. I have to admit, Mom has been following the bulk of this diet for years. I am sure she will relish the vindication the article provides. I'm sure the rest of us will find her smug satisfaction at having been right nearly intolerable.
Dr. Servan-Schreiber's best drinks:
Japanese Green Tea - known to encourage death of cancer cells.
Pomegranate Juice - drinking 8oz daily has been shown to reduce by 50% the growth of established prostate cancer.
Dr. Servan-Schreiber's best spices:
Ginger - fights certain cancer cells and helps slow tumor growth. Eat by grating into veggie stir-fry or steeping in boiling water for 10 - 15 minutes and drinking as tea.
Tumeric - enhances the effectiveness of chemotherapy, encourages death of cancer cells and slows tumor growth. Eat 1 TBS (if you have or have had cancer - 1 tsp if you don't) daily mixed with olive oil and ground pepper before being added to vegetables, soups and salad dressings.
Dr. Servan-Schreiber's best vegetables:
Cabbages and Cruciferous Greens - promote death of cancer cells and block tumor growth. Don't boil them. I have taken to sauteing broccoli with smashed garlic and olive oil, then baking in the oven.
Garlic, Onions, Leeks, Shallots and Chives - promote death of colon, breast, lung and prostate cancer cells. Need I even say it? Crush the garlic and cook in olive oil with some chives, then mix into mashed potatoes. Yuuuuummmmmmy.
Dr. Servan-Schreiber's best proteins:
Soy - prevents tumor growth. Drink soy milk, eat soy yogurt, add tofu to your veggie stir fry.
Fatty Fish - (Dad is going to love this - Mom, not so much). Fatty fish have been shown to slow growth of cancer cells in certain types of cancers. Anchovies (eeeeewwwwww) and sardines top the list, so long as they are packed in olive oil and not sunflower oil. Stick to small fish to avoid mercury contamination. Dad loves anchovies, so my recommendation to Mom is that she not share pizza with him on a going forward basis. Let him eat the hairy fish, Mom. You have a nice sandwich and try not to think about what your husband is gleefully gobbling up.
Dr. Servan-Schreiber's best fruits:
Citrus - Oranges, lemons, tangerines and grapefruit. Grated organic orange or tangerine zest is particularly good for fighting off brain tumor growth.
Berries - fresh or frozen - strawberries, blueberries, raspberries, blackberries and cranberries - these have been shown to inhibit tumor growth and promote death of cancer cells. I think some strawberries on angel food cake sounds just dreamy. I'm starting to get very hungry now.
Dr. Servan-Schreiber's best sweet:
CHOCOLATE!!! Dark chocolate, with a cocoa percentage of at least 70%, to be precise. I can say from experience, a block of dark chocolate accompanied by a hot cup of coffee is just fabulous.
Tuesday, October 28, 2008
Tuesday, October 21, 2008
Sit, Ubu, Sit...
A book so funny, it can make you forget you're having chemo.
No, really. It's true.
Mom and Dad were back at Sloan-Kettering for Dad's second round of IV treatments today. They saw Dr. O'Reilly, who made Dad's day by telling him that he is allowed to drink red wine in moderation (rare, indeed is the doctor who says to a patient, "by all means - go get wasted. Two Advil and a big glass of water before you pass out will ease the hangover"). She also told him he should feel free to make travel plans for next spring. Dad gleefully informed me that he and Mom will be in Paris when I deliver this baby but that I'm welcome to e-mail pictures to them. I assume he was kidding, but just in case they're actually going to Paris, I shall try not to take it personally. Even though they've been to Paris already. Multiple times. Harumpf.
Dr. O'Reilly said Dad has gained some weight, which is great news, and she was pleased with the results of his blood tests. She made some minor adjustments to his meds - little tweaks to get the best results possible out of them - and then sent him off to have his IV drip.
The drip takes an hour. As anybody who knows Dad can attest, sitting still for an hour is a near impossibility for the man. Mom said that last week, the time really dragged. This week, they each brought a copy of Sit, Ubu, Sit, by Gary David Goldberg. I have to credit Mom for Dad bringing the book; she started reading it last week and insisted that he bring his copy along for this session. Mom could nag for Team Italia if she put her mind to it, so rather than listen to her, Dad brought the book.
The nurses set up the IV and left Mom and Dad to their reading. According to Dad, the hour flew by and he was surprised with the nurses returned to change out his drip. Mom said he was reading with that funny little smile he gets on his face when he needs to laugh but is trying to hold it in. Mom doesn't stand on formality; she said she just laughed out loud. Right there, at Sloan-Kettering. Scandalous.
Anyway, Mom said they breezed through the rest of his treatment (it's hard to feel crappy when you're cracking up) and left the hospital in great form.
Great enough that once again, Dad drove himself home.
I guess that proves that laughter really is the best medicine.
So I'm putting out the call: If you have recently (or not so recently) read a really entertaining, funny book, please let me know by posting a comment here or by sending an e-mail to me. Reading is a great way to pass the time on these IV days, so I'd like to keep Mom and Dad stocked up on good material. Send your suggestions and save my parents from me bombarding them with chick-lit and Victorian-era mysteries. Dad will thank you. Profusely.
Sunday, October 19, 2008
Staring Week 2 in the Eye
Five days until the end of the first game. For reasons I can't explain, my head has cast this experience in tennis terms, which is super-bizarre because I don't play tennis and when I did (a million years ago), I was quite bad at it. Nevertheless, in my mind each two week course of chemo is a "game," each three game grouping of treatments is a "set" and the winner of the "match" will be declared when the adenocarcinoma is in remission and I am kicking Dad's arse up and down the Snowbowl at Dartmouth. This probably isn't the year to pursue our friendly little competition, what with him not feeling well and me being more than a little bit pregnant. But I've already got my eye on next winter - big time.
We saw Dad this afternoon. He's looking really good and he is totally committed to beating this thing. He has been doing lots of research into different therapies and treatments, and he came across something very interesting called "cyberknife". It's a type of radiology based, non-invasive, super-precise surgery. Channel 7 did an article about it a few weeks ago. I copied the text of the article and pasted it below. It's pretty interesting reading. You can actually surf up the television report on Channel 7's website, but the written report says essentially the same thing as the television report, without the annoying "T.V. Announcer Voiceover" component. The video does, however, give you a nice shot of the front of Riverview hospital and a look at a successful cyberknife patient riding his motorcycle in Red Bank. I have to admit - I'm confused about the motorcycle. Why would you go through all the effort to kick cancer's butt only to risk your life on a Harley? Next we'll probably see the dude hanging off the side of a boat on "Deadliest Catch" or something like that.
Anyway - here's the article. It's something that I'm going to look into more fully during the week. After all, Partick Swayze is supposedly being treated with cyberknife and if it could help Mr. Nobody-Puts-Baby-In-The-Corner, then I'm all for checking it out.
Peace,
Connie
**************************************************************************
National Library of Medicine ABTA.org CyberknifeSupport.org/forum/ RiverviewMedicalCenter.com Winthrop.org OverlookHospital.org
We saw Dad this afternoon. He's looking really good and he is totally committed to beating this thing. He has been doing lots of research into different therapies and treatments, and he came across something very interesting called "cyberknife". It's a type of radiology based, non-invasive, super-precise surgery. Channel 7 did an article about it a few weeks ago. I copied the text of the article and pasted it below. It's pretty interesting reading. You can actually surf up the television report on Channel 7's website, but the written report says essentially the same thing as the television report, without the annoying "T.V. Announcer Voiceover" component. The video does, however, give you a nice shot of the front of Riverview hospital and a look at a successful cyberknife patient riding his motorcycle in Red Bank. I have to admit - I'm confused about the motorcycle. Why would you go through all the effort to kick cancer's butt only to risk your life on a Harley? Next we'll probably see the dude hanging off the side of a boat on "Deadliest Catch" or something like that.
Anyway - here's the article. It's something that I'm going to look into more fully during the week. After all, Partick Swayze is supposedly being treated with cyberknife and if it could help Mr. Nobody-Puts-Baby-In-The-Corner, then I'm all for checking it out.
Peace,
Connie
**************************************************************************
RED BANK (WABC) -- There is a treatment for cancer that's becoming more and more popular.
It's called Radiosurgery, and several different high-tech machines are available to do it. One of them is called Cyberknife.
It's costly, but it's amazing. It's a radiation tool that functions like surgery, obliterating tumors with precision, without cuts and without pain. First, they were used only for brain tumors, then brain and spine. Now, they're expanding in use.
Motorcycle lover Tony Fusco has owned dozens of motorcycles. He's been riding since he was a teenager.
But it was only after the treatment of his pancreatic cancer that for the first time ever, he bought a bike that was brand new.
"It's like there's another life, you know," he said. "So I feel great, I really do."
Tony isn't cured, at least that's not the word yet. He's still being monitored, but he's had no cancer effects since he was treated with Radiosurgery three years ago.
He had gotten a very bleak diagnosis: inoperable cancer of the pancreas.
"So I said 'Doc, what does that mean?'" Fusco said. "And he said, 'I'm sorry to say that you only have four months to live.' And I just fell apart."
But Tony's close-knit family found an option for him at the Riverview Medical Center in Red Bank, New Jersey: a stereotactic Radiosurgery tool called the Cyberknife. It's a robotic arm that delivers very precise doses of radiation.
"We can give a high-end dose in such a precise manner than we get the same results as if we had cut it out," Dr. Nathan Kaufman said.
The arm movement allows for the radiation to be delivered from different angles, and the precision saves nearby organs from receiving radiation.
The robot is constantly adjusting, even to breathing movements.
"The robot is constantly imaging the target, so it's like a sniper fixing on a target," Dr. Kaufman said. "And even if there's a little movement, it will automatically move."
Not all tumors can be treated with the Cyberknife, but it's a growing option for many cancer patients. Radiation therapy is often one way to get rid of a cancer without surgery.
Actor Patrick Swayze, who has pancreatic cancer, is reportedly being treated with a Cyberknife.
Some hospitals have a similar system to the Cyberknife called the Novalis System.
Information from the American Brain Tumor Association:
How is Radiosurgery given?
There are several techniques used to deliver Radiosurgery. In the paragraphs that follow, we describe a typical day of treatment using the more common types of Radiosurgery equipment. Although the equipment or method you see may vary, the goal of the treatment is the same.
Your first contact with the Radiosurgery unit will likely be with one of the members of the Radiosurgery team. Radiosurgery requires a team of specialists. That team may include a neurosurgeon, radiation oncologist, radiologist, radiation physicist, neurologist, anesthesiologist, specially trained nurses, technologists and the unit support staff. Members of the team first review your medical records to decide if Radiosurgery would be of benefit to you. If it is determined that Radiosurgery is an option and you consent to treatment, the next steps will be obtaining the records and scans needed to plan your personalized treatment.
Your recent MRI scans, a current scan or additional images, biopsy or surgical reports, pathology reports, and specially designed planning software are used to precisely determine the plan for treating your tumor. The radiosurgery team calibrates the equipment to match your personalized treatment plan, including the area to be treated and the dose of radiation to be given. In general, the area radiated includes the abnormal area with a tiny margin of surrounding normal tissue. The dose of radiation is centered over the entire volume of the target area. The radiation dose decreases rapidly as the distance away from the target area increases.
GENERAL INFO CYBERKNIFE AND RADIOSURGERY
CYBERKNIFE IN OUR AREA: Riverview Medical Center in Red Bank, NJ; Overlook Hospital in Summit, NJ; and Winthrop-University Hospital in Mineola, Long Island.
Thursday, October 16, 2008
Interesting Article by Dr. Stephen Jay Gould
I came across the below essay while I was doing some research into the statistics surrounding different types of cancers. I freely admit that the author is considerably smarter than me. Okay - maybe not smarter (like I'd actually concede that issue in print!) but his writing style is definitely more elevated than my own. I read the essay several times because I wanted to be certain I fully understood the author's argument before I re-printed it here. Yes, I had to use a dictionary one point (You can guess among yourselves which word I needed to look up). My ability and willingness to make use of a dictionary is testimony to the outstanding education Mom and Dad made available to me. Most people I know just skip over the hard words.
But I digress.
Boiled down, this article says the following:
1. That in the fight against cancer, attitude is everything.
2. That on some level, all cancer statistics are lies because they are, by definition, distorted both by the short end of the bell curve and by the law of averages, and that the ability to read through the averages is a crucial skill.
3. That ultimately, there is no more powerful weapon on Earth than humor.
Dr. Gould said it much more eloquently than I, so I won't deprive you of the chance to read his essay. It really is quite good.
And yes, to those of you who went to Skidmore with me, we did read an excerpt from Dr. Gould's The Mismeasure of Man in LSI.
Peace,
Connie
*********************************************************************************
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.
But I digress.
Boiled down, this article says the following:
1. That in the fight against cancer, attitude is everything.
2. That on some level, all cancer statistics are lies because they are, by definition, distorted both by the short end of the bell curve and by the law of averages, and that the ability to read through the averages is a crucial skill.
3. That ultimately, there is no more powerful weapon on Earth than humor.
Dr. Gould said it much more eloquently than I, so I won't deprive you of the chance to read his essay. It really is quite good.
And yes, to those of you who went to Skidmore with me, we did read an excerpt from Dr. Gould's The Mismeasure of Man in LSI.
Peace,
Connie
*********************************************************************************
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.
Wednesday, October 15, 2008
Day 5 - Slow down? Fuggedaboudit.
Dad is such a rock star. When I spoke to Mom this morning and asked how he was feeling, she said, "How would I know? He got up early, ate breakfast and went to an all-day course. I haven't seen him, and I don't expect to see him until dinner."
Oh. Well. How's Dr. T, then? Might as well ask about the patient who is willing to hold still and be looked after, right?
When I spoke to Dad this evening, he sounded great. He was very pleased with the course (Heaven forbid we waste our time at a crappy dental course) and quite satisfied with how he is feeling overall (although still mounting arguments against taking the pancreas meds). He has put on some weight, which is attributable in part to his fantastic attitude about eating. It's also attributable in part to Mom, who has pulled an overnight, 180 degree attitude adjustment about food.
After more than 40 years of pushing salads with balsamic vinegar and steamed vegetables, she's suddenly jamming macaroni and cheese and ice cream at him. As she entreats him to eat more and more still, she breathes life into every single "Italian Mother" stereotype ever created. He likened himself to Gulliver in Lilliput, strapped to the ground while people march up his chest and pour food into his mouth. I don't think he'll eat foie gras again without having some pang of sympathy for the goose. He said something tonight about Mom holding a funnel. I have to admit, I was intrigued. Although I've seen Uncle Pete do a keg stand in the back yard, I'm pretty sure that memory would pale when set beside the image of Dad funnelling a milkshake.
I think Dad is planning to cover Dr. T's patients tomorrow. There is a chance that he will feel poorly tomorrow night or Friday, as the side effects of Tuesday's IV chemo hit his system. But there is also a chance that he will feel fine. Some chemo patients never experience chemo-related side effects, just like some expectant mothers never experience morning sickness (poor dears - they don't know what they're missing).
Were I a betting girl, I'd bet Dad is going to be one of those patients who continues to tolerate the chemo well. He just doesn't really "do" the whole "I'm sick" thing. He is far too busy finding new and interesting ways to risk his neck in the plane, on water skis and by suggesting to Mom that they get a puppy.
The puppy. He *really* wants a puppy and he's not known for his impulse control. If he comes home with a puppy, Mom might kill him with her bare hands.
Then I'll have to start a "Team Temporary Insanity - Blogging Through Mom's Murder Trial" blog.
Oh. Well. How's Dr. T, then? Might as well ask about the patient who is willing to hold still and be looked after, right?
When I spoke to Dad this evening, he sounded great. He was very pleased with the course (Heaven forbid we waste our time at a crappy dental course) and quite satisfied with how he is feeling overall (although still mounting arguments against taking the pancreas meds). He has put on some weight, which is attributable in part to his fantastic attitude about eating. It's also attributable in part to Mom, who has pulled an overnight, 180 degree attitude adjustment about food.
After more than 40 years of pushing salads with balsamic vinegar and steamed vegetables, she's suddenly jamming macaroni and cheese and ice cream at him. As she entreats him to eat more and more still, she breathes life into every single "Italian Mother" stereotype ever created. He likened himself to Gulliver in Lilliput, strapped to the ground while people march up his chest and pour food into his mouth. I don't think he'll eat foie gras again without having some pang of sympathy for the goose. He said something tonight about Mom holding a funnel. I have to admit, I was intrigued. Although I've seen Uncle Pete do a keg stand in the back yard, I'm pretty sure that memory would pale when set beside the image of Dad funnelling a milkshake.
I think Dad is planning to cover Dr. T's patients tomorrow. There is a chance that he will feel poorly tomorrow night or Friday, as the side effects of Tuesday's IV chemo hit his system. But there is also a chance that he will feel fine. Some chemo patients never experience chemo-related side effects, just like some expectant mothers never experience morning sickness (poor dears - they don't know what they're missing).
Were I a betting girl, I'd bet Dad is going to be one of those patients who continues to tolerate the chemo well. He just doesn't really "do" the whole "I'm sick" thing. He is far too busy finding new and interesting ways to risk his neck in the plane, on water skis and by suggesting to Mom that they get a puppy.
The puppy. He *really* wants a puppy and he's not known for his impulse control. If he comes home with a puppy, Mom might kill him with her bare hands.
Then I'll have to start a "Team Temporary Insanity - Blogging Through Mom's Murder Trial" blog.
Tuesday, October 14, 2008
Day 4 - First Day of IV Chemo
Ooooooh - cancer is scary!!! NOT.
Dad totally opened the can of whoop-arse today. His attitude rocks and he's tolerating the treatments very well. Saturday and Sunday were a little bit rocky. Okay - a lot rocky. I'd say the low point was when he decided that his pancreas meds weren't working so he just wasn't going to take them.
"Uh, Dad - I'm pretty sure they're not optional."
Happily, he was in the mood to be convinced, so it only took Mom and Chris and me to change his mind. If he hadn't been in the mood to be convinced, Mom and Chris would have been forced to pin him to the ground, plug his nose and shove the pills down his throat. I don't think they would have had to truss him, but he *can* get fiesty when he's ticked off, so I wouldn't rule anything out.
Monday he was back at work, feeling good and happy to be there. He was looking forward to getting through today's IV treatment, getting through the rest of the week and going flying with his friend, Dr. T.
Dad and Dr. T (another flying dentist) have flown together off and on for years. They've done so consistently since Dad started feeling poorly because Dad hasn't been been comfortable going up alone. Dr. T is there to be the healthy Right Seat (that's "co-pilot" to the rest of us), ready to spring into action, take the controls and land the plane in an instant if something were to happen to Dad.
Which made Dr. T's heart attack this morning quite troubling on a number of levels.
First, it's clear that they won't be flying this week. After they got him to the hospital, Dr. T had his daughter call Dad to cancel their take-off slot. Dad, who was sitting at Sloane-Kettering having his chemo cocktail mixed, was pleased to see that Dr. T's priorities were in the right place: plane first, everything else second. Dad agreed that perhaps this week's flight should be postponed. He also agreed to cover Dr. T's patients on Thursday. Talk about not letting your condition get in the way. Something tells me I won't be complaining about my pregnancy flatulence and my flat arches to Dad.
Second, and far more worrying to Dad: Who will be the healthy Right Seat now? Even with a brand-new stent successfully clearing Dr. T's arterial blockage, his health is suspect at best. Each of them is probably as likely as the other to keel over at the controls, which makes neither of them a good Right Seat to the other. Will they keep going up, with a portable defibrillator in Dr. T's lap and a vial of smelling salts in Dad's? Will they bring on a Third Seat - perhaps an EMT? It's a mystery.
Nevertheless, Dr. T survived his heart attack and is resting comfortably. Dad is suddenly feeling much more satisfied with his own situation. He may be having chemo, but at least he isn't keeling over on top of bales of horse feed like Dr. T and he doesn't have a stent in his chest. No, sir. Dad's ticker is doing just fine. In fact, Dad is doing just fine.
Fine enough that when he finished his chemo today, he picked up the car keys and drove himself home.
If that isn't Art Oberle behavior, I just don't know what is.
Sunday, October 12, 2008
Day 2
It's Day 2 and Dad has started as he means to go on. He's taking his GTX (the common name for the three oral chemo drugs he's on because someone, somewhere decided "gemcitabine," "capecitabine," and "docetaxel," was too much of a mouthful), resting when he's tired and getting outside when he feels like doing so. He went to a cocktail party with a bunch of his friends last night and sounded in good spirits when I spoke to him today. I think he knows that when it comes to fighting cancer, chemo only takes you so far. The rest of the battle takes place in your head and in your heart.
Being so new to this, I am doing a lot of research. Today's cancer lesson: excess simple sugar feeds cancer cells and helps them grow. It's not as simple as "sugar feeds cancer," which is what I first thought. It's actually excess insulin, which is produced when the body gets a lot of simple sugar, that causes the spike in cancer cell growth. So I guess that means no Jolly Ranchers and Tootsie Pops for Dad. Not that the Flying Dentist is a hard-candy junkie - that's hardly the case - but it's hard to take anything off the menu.
Dad's first intravenous chemo session is on Tuesday. We've got our fingers crossed that he handles the drugs well and that the cancer proves reactive to the chemo. We won't actually know how we are progressing until the middle of December, which seems like an awfully long time to wait (patience is not a strong Oberle trait - we prefer quick (okay - immediate) gratification), but we will just have to grin and bear it.
Thanks to all the people who have sent warm wishes, comments and e-mails of support. We appreciate each and every bit of positive energy you send our way!
Peace,
Connie
Being so new to this, I am doing a lot of research. Today's cancer lesson: excess simple sugar feeds cancer cells and helps them grow. It's not as simple as "sugar feeds cancer," which is what I first thought. It's actually excess insulin, which is produced when the body gets a lot of simple sugar, that causes the spike in cancer cell growth. So I guess that means no Jolly Ranchers and Tootsie Pops for Dad. Not that the Flying Dentist is a hard-candy junkie - that's hardly the case - but it's hard to take anything off the menu.
Dad's first intravenous chemo session is on Tuesday. We've got our fingers crossed that he handles the drugs well and that the cancer proves reactive to the chemo. We won't actually know how we are progressing until the middle of December, which seems like an awfully long time to wait (patience is not a strong Oberle trait - we prefer quick (okay - immediate) gratification), but we will just have to grin and bear it.
Thanks to all the people who have sent warm wishes, comments and e-mails of support. We appreciate each and every bit of positive energy you send our way!
Peace,
Connie
Saturday, October 11, 2008
Day 1
I forgot to mention one person - probably the most important cast member of all: Dr. O'Reilly from Sloane-Kettering. She's the Captain - the Director - the Driver of the Oberle Express. She'll be steering us through this process.
We met her on Thursday.
Her voice is soft and the lilt of her brogue makes even the most difficult of phrases easier on the ears. Phrases like, "sneaky, aggressive cancer," and "cannot be eradicated," somehow didn't sound catastrophic when she said them.
She did not sugar coat the truth, but she also did not drop us into a pit of despair.
She made sure we knew that in some cases, adenocarcinoma can be controlled with chemotherapy.
That she would not let the treatment of the disease become more of a burden than the disease itself.
That she would help us to keep the Dad we know and love doing the things he knows and loves.
That chemotherapy and a good quality of life, complete with part-time work (focused on the days farthest from his intravenous chemo days), is very much so a possibility for him, especially because Dad is a relatively fit, healthy, active man. I say "relatively" because he's a bit on the thin side right now and... well... not to point to the elephant in the room but he does have cancer after all. Cancer and the cover of Men's Fitness don't exactly go hand-in-hand.
So today is Day 1. Dad started his chemotherapy this morning. The pills have to be taken with meals, which is ironic because the inability to stomach food is what brought us to Sloane-Kettering in the first place. Nevertheless, I know Dad will do what he needs to do to poison the cancer, and I know that the rest of Team Oberle will do whatever we need to do to outsmart, outflank and overpower this enemy.
Once more into the breach! Charge!!!
Friday, October 10, 2008
Countdown to Chemo
T-minus roughly 12 hours until the gun goes off and Team Oberle starts the race of all races. It's been about 34 hours since the oncologist told us that Dad has cancer. Of course, that was 4 days after the preliminary biopsy of the spots on his liver came back with the "M" word: Malignant.
October 6, 2008. Dad's 70th Birthday. The day Dad's cancer crashed the party, kicked him in the nuts and announced, "I am here. I am called adenocarcinoma. Cower before me."
Oh yeah? Well guess what, adenocarcinoma. You can go piss up a rope. You hear me?
Rope.
Up.
Piss.
You.
Go.
Grrrrrrr.
Salient details - the cast of characters:
Dad: Art Oberle - age 70. Thyriod cancer survivor. Adenocarcinoma fighter. Dentist. Recreational pilot. All around good guy.
Mom: Lee Oberle - age sixty-somethingish but looks fabulous, and no, she hasn't had work. Much to her chagrin.
Younger brother: Chris - age 33. Tall, good-looking, intense. Newly married, but robbed of that blissful first year of marriage by a cratering economy and Dad's cancer. Chris is Team Oberle's designated Cancer-manager. I'm his wingman. I'm...
Middle child: Connie - age 36. Pregnant. Prone to emotional outbursts, melodrama (I am a middle child, after all) and periods of thinking deep thoughts on normal days. I'm a nightmare when I've got a bun in the oven. Hubby Dan calls me "Angry Pregnant Woman," and that was before Dad got cancer. I can't imagine what he'll be calling me by the end of the first round of chemo - probably "My Ex-wife...."
Older brother: Kurt - age 38. The Cool Dude. Lives in Charleston. Tall, good-looking, not intense. Permanently tan from a lifetime of sailing boats and generally being outside. Kurt has always been a calming influence for me. I'm going to need him to get through this.
The Cat: Zinny - age almost 18 (yes, you read that right). I think she's on her 29th life. I gave her to Mom (the world's most unwanted Mother's Day Present) when I was a freshman in college. I can honestly say I never thought I'd be 36 and pregnant with my second child and that damned cat would still be around. Just goes to show you - you never know. Anyway, right when Dad's biopsy came back, Zinny got an abscessed tooth. The side of her face blew up like she'd eaten a tennis ball. So in the middle of our cancer crisis, Dad had to take Zinny to the vet for oral surgery. Honest - he did. I couldn't make stuff like this up. I'm not that creative.
So I started this blog as a place to keep a log of Dad's treatments as well as updates on his health and on how we're all doing. Chris will get mad because it's not "discrete," but I'll have to live with that. It's a lot easier than having to have the same phone conversation fifty times with fifty people who want to know what's going on. That just gets exhausting.
So let's all fasten our seat belts and get ready to launch the Team Oberle Express!
Adenocarcinoma - you're in grave trouble. I suggest you start running NOW.
Grrrrrr.
October 6, 2008. Dad's 70th Birthday. The day Dad's cancer crashed the party, kicked him in the nuts and announced, "I am here. I am called adenocarcinoma. Cower before me."
Oh yeah? Well guess what, adenocarcinoma. You can go piss up a rope. You hear me?
Rope.
Up.
Piss.
You.
Go.
Grrrrrrr.
Salient details - the cast of characters:
Dad: Art Oberle - age 70. Thyriod cancer survivor. Adenocarcinoma fighter. Dentist. Recreational pilot. All around good guy.
Mom: Lee Oberle - age sixty-somethingish but looks fabulous, and no, she hasn't had work. Much to her chagrin.
Younger brother: Chris - age 33. Tall, good-looking, intense. Newly married, but robbed of that blissful first year of marriage by a cratering economy and Dad's cancer. Chris is Team Oberle's designated Cancer-manager. I'm his wingman. I'm...
Middle child: Connie - age 36. Pregnant. Prone to emotional outbursts, melodrama (I am a middle child, after all) and periods of thinking deep thoughts on normal days. I'm a nightmare when I've got a bun in the oven. Hubby Dan calls me "Angry Pregnant Woman," and that was before Dad got cancer. I can't imagine what he'll be calling me by the end of the first round of chemo - probably "My Ex-wife...."
Older brother: Kurt - age 38. The Cool Dude. Lives in Charleston. Tall, good-looking, not intense. Permanently tan from a lifetime of sailing boats and generally being outside. Kurt has always been a calming influence for me. I'm going to need him to get through this.
The Cat: Zinny - age almost 18 (yes, you read that right). I think she's on her 29th life. I gave her to Mom (the world's most unwanted Mother's Day Present) when I was a freshman in college. I can honestly say I never thought I'd be 36 and pregnant with my second child and that damned cat would still be around. Just goes to show you - you never know. Anyway, right when Dad's biopsy came back, Zinny got an abscessed tooth. The side of her face blew up like she'd eaten a tennis ball. So in the middle of our cancer crisis, Dad had to take Zinny to the vet for oral surgery. Honest - he did. I couldn't make stuff like this up. I'm not that creative.
So I started this blog as a place to keep a log of Dad's treatments as well as updates on his health and on how we're all doing. Chris will get mad because it's not "discrete," but I'll have to live with that. It's a lot easier than having to have the same phone conversation fifty times with fifty people who want to know what's going on. That just gets exhausting.
So let's all fasten our seat belts and get ready to launch the Team Oberle Express!
Adenocarcinoma - you're in grave trouble. I suggest you start running NOW.
Grrrrrr.
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