I was about business as usual today, having to do with my offspring. Discussing what they had experienced, I shared that I had faced IBC in 2007. The woman I was talking to said, “I had that”. Whoa! She was sitting across from me behind a desk, looking just as fine as you please, had [...]
I was about business as usual today, having to do with my offspring. Discussing what they had experienced, I shared that I had faced IBC in 2007.
The woman I was talking to said, “I had that”. Whoa! She was sitting across from me behind a desk, looking just as fine as you please, had it in 1995. She didn’t want me to take her picture or make a fuss. She was not into a fuss thanks, got stuff to do.
What’s amazing about her story is that she’s alive, and the doctors who treated her botched it one way after another. She was diagnosed Stage IIIC IBC not before, but AFTER 2 botched surgeries where they took the wrong part of the breast! The third surgery yielded the proper diagnosis, MRM, only one breast, not bilateral because “we don’t do that”. Lots of dreadful chemo after (yes, after!) the surgery, which did not include herceptin of course because even though her cancer was Her2+ herceptin did not exist. Then, she did not get radiation either!
Yikes! And there she is, cool as a cucumber, telling me about it!
Go figure. Sometimes the best care in the world does not do what we want it to, sometimes the worst in the world doesn’t stop us from conquering. The happy medium is that these days, when women and doctors know more than they have ever before, and patients are full on players in their own story, more and more of us are going to beat it and get on with it, and decide for ourselves whether “making a fuss” is useful or not.
So much for statistics, prognosis, or any other attempt to predict the outcome of anything!
I guess what this reinforces for me is that always, always, anything is possible.
I continue to make a big fuss, to help keep things moving forward in the right direction as much as I can, for all of those who can’t.
My 15 year IBC survivor friend is quietly doing a whole world of good where she is. She is impacting the next generation, and I’m so glad that she’s still around, doing what she’s doing. She is someone I will run into frequently in my everyday life. Now every time I see her I have another reason to smile, and smile big.
Yesterday, I had the loveliest afternoon and evening. I went and saw the Bodyworlds exhibit with my husband, my dear friend Susan, and new friend Kit. It was nothing less than amazing. Bodyworlds is an amazing display of the human body in movement, health and also in disease. The technology is plasticized human cadavers donated [...]
Yesterday, I had the loveliest afternoon and evening. I went and saw the Bodyworlds exhibit with my husband, my dear friend Susan, and new friend Kit. It was nothing less than amazing. Bodyworlds is an amazing display of the human body in movement, health and also in disease. The technology is plasticized human cadavers donated to science. They are beautifully and reverently displayed, and utterly fascinating. Interspersed with the specimens were elegant displays of relevant information. Susan and I are both massage therapists, so we were like little kids in a store full of chocolate, greeting the bones, muscles and nerves like old friends.
After the exhibit, we came home and watched a fascinating movie called “The Living Matrix”, about what they called “Informational Medicine”. The theory is that illness is scrambled information, and that by restoring the natural blueprint to the bodymind, health can be restored. It’s a complex topic too big to go into here, but the nugget that got me thinking was the discussion about the Placebo Effect. One doctor pointed out, if the placebo effect is documented to aid healing up to 30% of the time, why aren’t we using it?
In my case, I don’t think that belief itself changed anything about my disease. I think instead that the focus of my belief sent powerful messages to my body, which engaged my own healing response. I am deeply grateful that my doctors, and my mom, used their own Informational Medicine.
For whatever reason, I believed with all my heart that I would survive. I don’t know exactly why I did. The story I made up served me. I believed for myself that if I got the lesson, the teacher would leave and not return. I believed that what I was being asked to do was learn to really love myself, to open my own heart to me. I asked for any karma I had coming to make it’s way to me right then, in February of 2007. I decided to receive all that anyone wanted to give me. I used every tool I knew of to heal my whole life. This was and is my belief. I believe that staying on this path will keep me well.
What I did not know was that this story I was using to empower myself was fragile indeed. Any doctor could have deflated it easily, with one thoughtless comment or practical observation. The facts (the statistics) were not in my favor, the truth of which I was blissfully unaware. How did this happen?
It started with Dr. Borofsky. She did not tell me what she thought I had. She said that it was “very possibly” a cancer, and that we would know more when I received my full diagnosis. I was scared out of my mind. I asked her tearfully, “am I going to die?” Now there’s a silly, loaded question! Even bolder was her answer.
“No. No you’re not”. She said it with a firm shake of her head. I believed her. If she had lied, oh well, I wouldn’t be around to scold her for it! I believed her implicitly. I asked her about it later, and she laughed. She said that what she meant was,
“no, not now, not on my watch!” It was good enough for me.
When Dr. Brown told me my diagnosis, she did not express dismay when she said the words “Stage IIIC Inflammatory Breast Cancer”. It rolled off her lips like “it’s raining today, shall we eat inside?” When I asked for a prognosis, she said, “we’re optimistic”. That’s all I could get out of her.
Dr. Metkus wouldn’t give me statistics either. She said, “why do you want statistics? What good would they be? No one has ever studied Elizabeth Danu before.” My friend Flo told me that she had mentioned me to Dr. Metkus, and that the doctor had observed, “she’s a survivor”.
My mom totally censored the information she sent my way. The 25-50% survival rate for Inflammatory Breast Cancer never reached my ears. Instead, she sent me snippets of things that gave hope, and posts from long term survivors on the IBC support list.
My doctors, and the people who love me, conspired to keep me in the dark about what might frighten me, and they fed me what gave me strength and courage.
Never worry about giving someone “false hope”. No hope is false! There are exceptions to every statistical curve. This is why I read and re-read “Remarkable Recovery”. It was full of stories about people who disproved the statistics, and did what they knew would heal them. A basic principle that I learned years ago is, it’s true if it works!
My paradigm worked for me, and I am so grateful that the healers in my life supported my belief. This is the Placebo effect at work, deliberately.
This site is about Informational Medicine Power. Take what gives you strength, makes you laugh, brings hope, or whatever else you want, and disregard the rest. Reality is overrated!
My mom sent this to me during my “Oh My God what almost happened to me” freak out, after surgery and before radiation. At the time, I suddenly became fixated on statistics. I asked my doctors about statistics, and they didn’t tell me. Others had asked me about my prognosis, and nobody would give me [...]
My mom sent this to me during my “Oh My God what almost happened to me” freak out, after surgery and before radiation. At the time, I suddenly became fixated on statistics. I asked my doctors about statistics, and they didn’t tell me. Others had asked me about my prognosis, and nobody would give me one.
I tried to pin down Dr. Metkus, my wonderful surgeon, to get some sense of what to expect. What I really wanted was for someone to tell me that the statistics were in my favor (which I know now they weren’t).
She looked me straight in the eye and said evenly, “What good are statistics? No one has ever studied Elizabeth Danu before”.
One of my survivor friends, who continues to live far beyond her prognosis, joked “maybe I should just be a good patient and die now!”
I really had some first rate doctors.
Here’s the article, with the preamble from my wonderful mom.
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
I just posted a blog about Inflammatory Breast Cancer. Why? It’s a rare cancer, so it may not be relevant to a lot of people. But for those who want to know, it is more than relevant, it is extremely important and unbelievably scary. Why? Stinkin’ statistics! When you or someone you love is diagnosed [...]
I just posted a blog about Inflammatory Breast Cancer. Why?
It’s a rare cancer, so it may not be relevant to a lot of people. But for those who want to know, it is more than relevant, it is extremely important and unbelievably scary. Why?
When you or someone you love is diagnosed with cancer, it is tempting to look for hope in statistics. The problem with that is that many statistics are irrelevant by the time they’re published. Sometimes you’ll find different statistics in different places. If the statistics are on your side, maybe it helps to look at them and maybe not.
When I was waiting for my cancer diagnosis, my mom was going crazy on the internet, looking up all kinds of breast cancer and trying to second-guess her fear. What I had sounded alarmingly like IBC. She told me she said to herself, “oh please God, not that one!” Everything she read about it sounded terrifying, the statistics not the least. She didn’t tell me any of it. When Dr. Brown gave me the diagnosis of Stage Three Inflammatory Breast Cancer, her tone of voice and facial expression told me it was breast cancer, period. She told me that I had an aggressive cancer and that we would treat it aggressively, and she was optimistic because she was confident that I could handle the treatments.
I responded to her optimism with my own. I was very blessed to have her and the other amazing docs on my team taking care of me. I didn’t know that I had the bogeyman of breast cancers until later, after my “phenomenal” response to chemotherapy.
So, if you or anyone you know is facing cancer, forget about statistics if they aren’t great. If they are, so much the better. Each of us gets to choose where to direct our energy, and for me the pursuit of my own happiness and well being was the most important task on earth in 2007.
I still try to remember that. When Mama’s happy, everybody is happy!
About The LIberation of Persephone/ElizabethElizabeth Danu started this blog to provide a postive and useful resource for people facing cancer and thier loved ones. She is now a ten year survivor of Stage IIIC Inflammatory Breast cancer, enjoying her post-cancer life as a mom, blogger, speaker, wellness consultant and unquenchable optimist. She also sings and performs regularly with her a capella quartet, Curious Blend.
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Disclosure:My intention with this website is to provide an oasis of hope for those facing a fierce diagnosis. Any proceeds from this site go towards building this resource and for breast cancer research, particularly directed towards Deadline 2020 for the end of breast cancer. Blessings, Elizabeth
My bedside companion in 2007
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