The Candidates’ Cancer Plans
These are links to the presidential candidates’ published cancer plans. Please take the time to read them!
After Stand Up To Cancer
I think the greatest thing about Stand Up To Cancer, besides the money it raised for research, was that it helped us all to be aware of the need to support cancer research funding. I think the public response to Stand Up To Cancer (countless celebrities were involved and at least 10 million viewers participated) made the point that Americans care about finding an end to a disease that harms and kills so many of us.
The SU2C web site will remain up and will continue to accept donations, I hope forever. I hope that as the Jerry Lewis telethon has become an annual event that SU2C will continue every year until cancer is defeated.
There is a new pending legislation authored by Senators Kennedy and Hutchison to renew the war on cancer. Senator Kennedy was working on it before his own cancer diagnosis. Cancer had affected his family long ago…his son lost a leg to cancer when he was 12.
You can read more about the bill on this very good link Cancerbill.org. Information there also lets you know ways you can help promote this legislation when it is introduced and moving through Congress. We all need to do our best to help this legislation become reality. You can Sign up For News about this bill.
I have never been a political person or activist, there are times I haven’t even voted, I’m ashamed to say. Prior to a few months ago I never paid attention to pending legislation. I excelled in school, but truly hated government and economics and political science, I suffered through those classes. The political process wasn’t for me.
Becoming involved in the legislative process and writing my representatives is a totally new experience for me. I’m sure I would have been voted by many “least likely to get involved in the political process”. Having been involved with the Scientist-Survivor Program and having communicated with cancer research scientists, though, opened my eyes. Having been in the cancer community so long and seeing so much suffering has truly impacted me. The largest funding source for cancer research is still the Federal government. We need the government to give us more. I’ve even recently become a Legislative Ambassador for the Cancer Action Network.
My small part in writing the letters I’ve written and doing the research I’ve done probably doesn’t make a difference all on it’s own…but if we all did it, we’d be a voice that could not be ignored.
We’ll make a difference if we stand together. Please be involved.
The Median Isn’t the Message by Stephen Jay Gould
I’m working a whole lot of hours this weekend, so won’t be blogging! I am instead putting Stephen Jay Gould’s wonderful message of hope here for my readers. I read it on another cancer site, and as a medical professional who lives by statistics and numbers (and who defied them), I loved reading this. I hope you will too. Stephen did eventually die of cancer…but a different and unrelated cancer two decades later.
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.
Things we don’t know
I have been in the cancer community now for over seven years. I am in the community of cancer patients who battle a very tough cancer, appendiceal cancer.
When I was diagnosed with appendiceal cancer and finally located medical literature and statistics related to my cancer, I realized I was up against a monster of an enemy, a monster cancer. In the literature I read, only 10% survived a signet ring appendiceal cancer diagnosis…and even that wasn’t necessarily cancer free or for more than five years. I never tried to look up cancer free survival in that 10%…I was afraid there was NO number. I was afraid the number would destroy any small bit of hope I might have clung to. My husband, also a nurse, knew I was up against tremendous odds.
My husband and I joked at first about a “Cancer Menu”. If you knew you had to have cancer but could choose your cancer from a menu and pick which kind you would want to have, appendiceal cancer would be at the bottom of the list with pancreatic cancer. Late stage ovarian cancer would even be preferable. Basal cell carcinoma would be at the top of the list followed by prostate cancer and breast cancer. Breast cancer had at least a 90% survival rate compared to my 10%. I’d have traded for breast cancer in a minute.
Appendix cancer was near the very bottom of the cancer menu. No one should ever have appendix cancer. A useless appendage that threatens your life. How unfair is that? How unjust?
I’ve since communicated with hundreds diagnosed with appendiceal cancer. Even with the best of treatment is has a high recurrence rate. Many have lost the fight, and my heart breaks every time that happens, every time I learn another has lost the battle. I hate appendix cancer.
But here’s the thing. The interesting and hopeful thing. The thing that defies explanation.
There are people I’ve met in my journey, just a few, who make me realize that we don’t know everything. That there is never NO hope.
A woman I took care of in my hospital had a cancerous colon tumor when she was 40 years old and was raising her kids. Her husband had been disabled by an accident and could not help her support her family or raise her children. Her cancer had spread into her abdomen. A single mom with stage IV cancer. Her surgeon removed the tumor. Then she kept having recurrences in her abdomen. No peritoneal chemo, no IV chemo, just years of tumor recurrences and removals. Her surgeon said he’d wished he could have installed a zipper in her abdomen as he’d had to open it so many times to remove her cancerous tumors. But then, one day the tumors just stopped recurring. She is an elderly woman now who’s then gone for decades cancer free after multiple recurrences at Stage IV.
Another woman who’s contacted me has been alive for 20 years with appendix cancer. She had HIPEC initially, but has had periodic recurrences since HIPEC. She has had abdominal tumors removed several times but has gone on to live her life. Her appendix cancer has never been cured, but to her is just a chronic illness. She lives a full life in spite of decades with chronic appendix cancer.
Another young woman I communicate with was diagnosed with Stage IV appendix cancer a decade ago and told she might only have three months to live. She had surgery and IV chemo with only 5FU and leukovoran but married and had a child after diagnosis. Then the cancer recurred in her lung and she had an entire lung removed. But almost a decade later she is alive and cancer free. Against all odds, defying explanation.
Those cases are unusual and in the very small minority, but they are there. My very favorite author, Lewis Thomas, was a physician and biologist and at one time was the president of Memorial Sloan Kettering, the cancer institution where I was treated. He was like myself, a medical professional who believed and accepted as truth the science and the published medical statistics.
But Lewis Thomas said once in awhile they would send home an advanced Stage IV patient riddled with cancer that they had no more treatment for. They would send him or her home to die……and a few would come back to visit them years later cancer-free and healthy, defying the medical literature. The mystery they couldn’t explain. It didn’t happen often, but it happened.
We don’t know everything, but there is never NO hope. The odds of being diagnosed with appendix cancer are about one in a million. We’ve aleady defied the odds in being diagnosed with this cancer. But who’s to say no matter how sick we are, that we can’t, like I have, defy the odds?
Collaboration
I have always been in love with words. I’m a word junkie. And lately I have a new favorite word: Collaboration. I’ve had to learn to spell it…I still want to put and “e” where the second “o” goes.
I looked up the word collaboration. One definition I found of the word was: “The process by which people/organizations work together to accomplish a common mission.”
Another I liked even better was; “A process where groups that disagree, often significantly, come together to identify common interests, define common problems, and seek solutions that reach beyond what any one of them could accomplish on their own.”
Cancer has made me come to respect and revere the ability of collaboration to change lives, to change the world.
The word first became significant to me when I attended the annual meeting of the American Association of Cancer Research in April of this year as part of their Scientist-Survivor Program. Survivors like myself were partnered with other survivors who advocated for those affected by cancer. We partnered with cancer scientists, physicians, and even the Deputy Director of the NCI as part of a collaborative effort to advance each others causes. We were able to advance our mutual goals by communicating with each other.
I met brilliant scientists who had graduated from Harvard with PhDs who wanted to collaborate with me (!) in my helping those affected be cancer, who valued my part in the cancer community. I witnessed thousands of scientists sharing information and collaborating to defeat cancer. What I learned from those interactions has made me a better advocate, both for those diagnosed with cancer and for those working to defeat cancer.
We live in a competitive society. We all want to be the best. Funny thing, though, I think most of us feel the greatest satisfaction when we come together…maybe during a catastrophe like a hurricane or tornado or an earthquake or 9/11. When we need to come together to make a difference…..when we collaborate. When we have to come together because the problem is bigger than any one person or small group can handle. In a crisis, when we collaborate, magic happens. Magic that makes us feel part of a greater good, that makes us feel like we count, that makes us feel we make a difference.
September 11th was a crisis, an emergency that bonded us, but cancer kills as many as the terrorist attacks EVERY TWO DAYS. It kills more than 500,000 in the United States every year. Cancer is a crisis. Cancer is a huge hurricane, bigger than Katrina. Cancer is a thousand tornadoes, a multitude of earthquakes.
But collaboration….the great scientific minds coming together, the resources and passion each us can contribute, the potential for worldwide communication now made possible by the Internet, the knowledge made available by the genome project, the banding together to fight a common enemy. There is now potential for the ultimate collaborative magic.
It’s why Stand Up To Cancer so inspires me. Collaboration is what SUC2 epitomizes. Collaboration on a grand scale, a unified scale. Dream teams of collaborating TV networks and anchors, dream teams of those famous and those common all affected by cancer, dream teams of scientists, dream teams of artists. The possibility that not being the best, but that sharing our best together ultimately changes the world. All of us coming together to defeat cancer, all of us focusing on “we” and not “I”. All of us banding together to defeat a common enemy. The ultimate act of love, altruism at its best.
Cancer, the enemy, affords us all a chance to make a difference, a chance to bond, a chance to work together for a common goal, a chance to defeat a common enemy, a chance for all of us to count, to matter.
All of us…we can all collaborate to become part of the ultimate dream team that makes a difference the enemy that affects us all.