As October approaches, we will see a parade of pink ribbons, gathering momentum throughout the month. Lots of inspiring stories, donation campaigns, pink labels on the things you buy all the time. And lots of businesses will make lots of money, courting your business for “the cause” and donating “a percentage” to the breast cancer [...]
As October approaches, we will see a parade of pink ribbons, gathering momentum throughout the month. Lots of inspiring stories, donation campaigns, pink labels on the things you buy all the time.
And lots of businesses will make lots of money, courting your business for “the cause” and donating “a percentage” to the breast cancer cause.
I hate pink ribbons! I hate them and I wear them. When I was in chemotherapy they made me feel supported. Now I see them on cereal boxes, cat litter, you name it. Blech.
When I was diagnosed in 2007, I was under the impression that breast cancer was a disease that had been mostly conquered. I had heard all about early detection, better treatments, etc. etc. etc.
What? Stage III? Inflammatory Breast Cancer (survival rate: 20-40%) Really?
Do you know what really happens when a woman is diagnosed with breast cancer?
Regardless of what stage her disease is, she has a one in three chance of it coming back as metastatic disease.
Breast Cancer kills, folks. It kills 150,000 people this year.
My friend Kathleen has posted about how the media, especially women’s magazines, support our complacency with erroneous drivel disguised as facts.
Why is this pinkwashing going on?
Well, all the folks who make money with your purchases would like us to believe we are winning the battle against breast cancer, so we can feel like we are doing something. If we feel that we can do something (because we are good citizens of course) easily by buying this or that pinkwashed product, then everybody from toilet paper manufacturers to water providers can cash in on increased sales from which a tiny percentage they make their token donation.
The Pink Crusade has a very dark underbelly. Those of us who have been through the hell of what real breast cancer is steel ourselves for the sweetness and light of Breast Cancer Awareness Month that is a figment of the collective imagination.
The battle looks very much as it has for decades.
We’ve made strides. But we have won skirmishes, not the battle.
Too many women and men still die. Too many are now living with metastatic disease, subjecting themselves to treatments that make them sick to get some more time. Who among us wants to leave before we are ready?
What would you do if you were running out of time and you weren’t done yet? What drugs wouldn’t you try?
If you were sick with chemotherapy or compromising your quality of life for more time, or losing the use of your arms, back, or brain to cancer that just keeps marching on, what the hell would you be saying about the Pink drive for dollars, and the commercialism of breast cancer?
So what can we do?
1. Research before you buy. Don’t just buy because there’s a pink ribbon on the box. Bookmark Think Before You Pink and take action.
2. Join Army of Women. Be a part of the search for the CURE, not more mammograms or salaries for CEO’s of nonprofits. Those are important, but the cure is the most important. I am thankful for mammograms but my cancer did not show up on a mammogram, and I am not alone (that’s not what you heard, is it?). I will be ecstatic when I know my daughter can grow up without fear.
3. Get behind Deadline 2020.
4. Donate directly to legitimate breast cancer charities. Fund raise if you like, but make sure that you know exactly where the proceeds are going.
I would like to rename Breast Cancer Awareness Month to Face Reality Month. Anybody with me?
I just added another post on this topic at Everyday Health. Let’s take back October!
F—#*!!!! CANCER! Every so often I go roaming the internet late at night. I followed the blog of my friend Anna, and ran into the devastating stories of more lives lost, to ovarian cancer. My support of Deadline 2020 for the end of breast cancer is something I am 110% behind because it’s time for [...]
Every so often I go roaming the internet late at night. I followed the blog of my friend Anna, and ran into the devastating stories of more lives lost, to ovarian cancer.
My support of Deadline 2020 for the end of breast cancer is something I am 110% behind because it’s time for the end of ALL cancer. Yes, that is ambitious, but it’s logical. The important pieces we learn about one cancer often leads to inroads into understanding other cancers. We will wipe out breast cancer when we understand how to prevent it, and how to stop metastasis. Do do that we need a major paradigm shift, because currently only less than 5% of research currently goes into the study of metastatic disease. People don’t die of cancer in the breast. They die of metastatic disease. What the @#!!! is going on here? When we understand this process and how to stop it, the treatments for many cancers will change. For more on what’s really going on in breast cancer research, check out the Deadline 2020 website.
I lost my father to Lymphoma when I was 19 and he was 44. I have several friends with metastatic breast cancer and I am reading all across cyberspace about more deaths, a tide that has to be stopped.
Fran Visco said this weekend that when we reach January 1, 2020, we will all be out of a job, because we will have accomplished our objective.
Not me. Not until it’s over for all of us.
And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I [...]
And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I was diagnosed, I had been a full time professional Massage Therapist for nearly 20 years. I knew all about complementary therapies, but I had been neglecting myself, badly. I wasn’t just a wounded healer. I had been limping for a long time. I had just emerged from an awful divorce, huge work stress (the hospital where I worked was downsizing, and the pressure was on!), and my children were suffering. They were 7 and 9. I knew something had to give, but I didn’t really know how to get out of the quicksand I was in.
When I got the diagnosis, I knew I had to fight and fight hard. I decided that I had an opportunity to heal my whole life, and that embracing that task would give me the best chance to survive. I sought healing of body, mind and spirit, and most importantly to mend the rifts between them. The word “congruence” was my operative word, and still is. So, my take on complementary therapies is really an approach rather than just a list of modalities. having said that, I pretty much used them all!
My practices for myself:
1. Say “yes” when anyone offered help. Accept with gratitude. Believe that I deserved the help and that giving it was a blessing to the ones who offered.
2. Put myself first, for the first time ever in my life, no matter who it upset. I was fighting for my life, and I knew it. A total stranger told me to do this, and I believed her.
3. Actively and deliberately sought my own happiness. It took awhile to figure out what that looked like.
4. Made a decision to stop beating myself up, period. Nothing was gained by my perfectionism, and I was beating myself down. Now I question my tendency to self blame, and if I find something that needs to change, I take note and move on.
I had to rely on #1 a lot, because I was not in a financial position to pay for everything I received. Still, I accepted it, and it all helped, more than the sum of it’s parts. Here’s my list:
1. Massage Therapy. I received a massage once a week while I was receiving chemotherapy. My colleagues at the hospital did this for me voluntarily, on their own time. I will always be deeply grateful for this.
2. Healing Touch. I received this through a Stanford University study called Healing Partners. I received one session per week for six months.
3. Acupuncture. My mom offered to pay for this because she knew it would help. I was a struggling single mom when I went on this journey so I did not have the funds to do this. I received acupuncture once every two weeks.
4. Guided Imagery. I believe this had a huge impact on my treatment. I used it to keep my blood cell counts up, to maximize the effectiveness of my treatments, and for healing after the treatments were over. I’ve already written a short article about that on the pages for Complementary Therapies. Excellent Guided Imagery CD’s and MP3 downloads are available from Health Journeys.
5. Support: I went to an Art and Imagery support group. This was a combination of Guided Imagery and using art therapeutically. It was very helpful. That program closed at the hospital and I really miss it. I also found my Caringbridge site to be a huge source of support.
6. Counseling. Fortunately for me, this was available through California Cancer Care where I received my treatments.
7. Laughter! I didn’t do “laughter therapy” (whatever that is…I haven’t tried Laughter Yoga but I have a friend who’s into it and loves it) but at the time I was diagnosed I had been attending a comedy improv class every week, and I made sure to continue. I timed my chemotherapy so I would be up for my class, and I didn’t miss a single one! Even after my surgery, I couldn’t play, but I could watch. I’m convinced that laughing my head off every week was very good for me.
8. Exercise is very important! I took advantage of the “Living Strong, Living Well” program at my local YMCA and did weights, cardiovascular exercise, and whatever else seemed like fun. I also did yoga at home, and some chi gong. I had a couple of videos and they worked well for me. I have a chi gong video that offers a 10 minute sequence for cleansing, called simply “chi gong for cleansing”. I am convinced that my complete recovery from surgery with my range of motion intact is because I did yoga.
9. Nutrition: My doctor told me, “Eat what looks good to you”. I wanted to be a martinet about what I ate, but I had decided to accept all help so I indulged in comfort food when it was offered. What I did do is create a smoothie that covered all the bases, and I had that every day during chemotherapy. Now I’m a bit more careful, but not super strict. I find the information on “Food for Breast Cancer” useful and I read the research they publish.
10. Cultivate hope, actively. I read everything I could get my hands on about recovering. The book “Remarkable Recovery” was my constant companion. I read the stories over and over, especially if I was feeling worn out by it all. The gist of what I got from it was that beating the odds was about doing it how you do it best, and it’s different for all of us.
11. Self expression and creativity. Everybody has her own way to do this. I found blogging, and loved it. I also got tons of support online, which was a huge help. I picked up a paint brush for the first time in 20 years or so. As I went through radiation, I was also rehearsing for a musical, again for the first time in 20 years. For you it may not be this sort of stuff, it may be something else, but whatever it is, it makes your spirit hum! If you’ve forgotten what that is, it’s time to discover it again!
12. Prayer. Whenever anyone offered to pray for me, I said yes, by all means please do! Acknowledging that my life was worth praying for, and allowing total strangers to pray for me (I was on a ton of prayer lists) was an important act of self love. There is research that supports the effectiveness of prayer, and I believe deeply that true self love sets all kinds of positive cellular happenings in motion.
13. Substitute “Feel Everything” for “stay positive”. I heard that stay positive stuff all the time from well meaning people. Being a Pollyanna does not help. Neither does denial. What does help is honoring what you feel, give it expression, and keep things moving. I didn’t elevate my lousy mood by pretending I didn’t have it. I blogged, “feel like crap, going to bed” and then later absorbed the messages of hope from my friends on my guestbook. I cried my way through a few infusions, and then felt better. After I cried I could make art or settle into my warm bed with some hot chocolate. Everything is allowed!
There’s my first stab at it ladies, for my dear IBC sisters and anyone else this may help. If you have any questions about what’s here so far, or want me to elaborate some more, please send me an email at firstname.lastname@example.org. What you tell me you want is what will be in Part Two. In the meantime, I am sleuthing out links and resources.
I hope this helps!
We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite. My last blog on Everyday Health generated comments [...]
We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite.
My last blog on Everyday Health generated comments from two survivors, one of 12 years, and one of five years. The five year survivor had story similar to what I posted yesterday. Still here, backwards treatment and all!
We need to know you’re out there, survivors!
I had a great day today. I gave a massage, did theater with some kids, and then went to the childrens hospital. Now my husband and my son are bugging me to get off the computer and go watch “V” with them. Life is good.
Everybody deserved a life that makes her as happy as mine does me. Let’s make it happen by 2020.
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.
We all know we are supposed to exercise. I was doing well until the weather changed and my walking buddy started having trouble with her ankle. Every day I haven’t exercised has made me anxious! I know I’m supposed to be doing it. I have a gazillion excuses… It’s yucky outside. I don’t feel like [...]
We all know we are supposed to exercise. I was doing well until the weather changed and my walking buddy started having trouble with her ankle. Every day I haven’t exercised has made me anxious! I know I’m supposed to be doing it. I have a gazillion excuses…
It’s yucky outside. I don’t feel like it. I have so much to do, I’ll do it later, no, I’m tired, it’s dark, whine whine. Thanks to my dear ol’ mom, I have no more excuses!
Seriously, exercise is really, really important. Study after study shows the benefit of exercise, both as prevention and to reduce the risk of recurrence. It’s also good for just about everything else. I’ve been doing a lot of research on the internet lately. Body mass index and survival are inversely related. The higher the BMI, the poorer prognosis statistically. Exercise also impacts insulin resistance, a factor that is becoming recognized as a contributor to the development of cancer. I have a love/hate relationship with exercise, as I’m sure a lot of us do.
I do great for awhile, and my body, mind and spirit hum. Then something gets me off track, and the all or nothing gal that I am not only drops the ball, I roll it down the hill behind me!
So, this technological device is worth its weight in gold to my way of thinking. I can choose from a number of clever games that are just that, games! I’m being a kid, throwing snowballs at my family or being chased by a dog on my bicycle, and I’m getting exercise.
Not only me, but my children as well! My son is very competitive, and the thought of mom doing better than he does is intolerable, so he is now effectively weaned from passive video games in favor of exercise.
Something else I am noticing, which seems an obvious metaphor. My husband, who is calm to the point of being aggravating to his high-strung wife and step kids, leaves us in the dust when it comes to balance games. Now, this is my focus. Balance! I will be a penguin on an iceberg, cruise down the rapids in a bubble, dodge panda bears and shoes with my head, and any number of silly games to achieve balance first. I feel calmer at the end of the day when I’ve been doing that.
My journey into this world of advocacy and awareness has been startling, terrifying, and exhilarating. During my entire journey through cancer treatment I really managed to not know what kind of trouble I was in. I didn’t want to see the scary parts, I just wanted to plow on ahead in warrior mode, pass the finish line and be done with it. I blogged all the way through, and then when it was all over I got depressed.
Then, I got scared. So many of my blogosphere friends dealing with metastatic disease, so many blogs gone because another woman lost her battle. Terrifying and humbling, this. I alternate between terror and survivor’s guilt. Today where I stand is committed and awake, painful as that has been to get to. I have combed the statistics. I have pored through women’s stories. I have faced the impact of my current choices, and improved them. Life is a gift I cannot take for granted, and I need to keep on fighting for those who can’t anymore, and for those who are gone.
What am I fighting for? Awareness, a cure, and a future without breast cancer.
And that crazy Wii? Thanks so much Mom. I’m not facing chemicals anymore, I’m creating my future without cancer to the best of my ability, God willing, and you’re still helping.
I never could do it without you!
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!
As I have become more and more overwhelmed by what I want to do and more serious about it, I have been noodling all over cyberspace. What I have discovered is that there are tons of wonderful resources out there! The trick is finding them. What I do is go to a blog I like, [...]
As I have become more and more overwhelmed by what I want to do and more serious about it, I have been noodling all over cyberspace. What I have discovered is that there are tons of wonderful resources out there! The trick is finding them.
What I do is go to a blog I like, then go to a blog she likes, and another, and so on. It’s a wide world in cyberland, and a wonderful community of serious bloggers who are giving hope, educating, and dealing with cancer with courage and grace. Today I found Being Cancer Network. The blog was conceived by a two time survivor who beat the odds, and is now facilitating a blogger network to help people cope with any diagnosis.
What I am finding is that there is a vast, amazing flow of information and inspiration going on, and all the ideas I have floating in my head about what will be helpful are already being implemented! That is just SO amazing and fantastic.
My vision of this site is expanding and coming into focus. All of this great stuff I’m finding will be traceable from here!
I found Survivor Profiles. I’m sure I will add some of my own, but there are some already out there that I can link to.
The blog network is inspired. I didn’t think of that one at all! What a great resource!
I would like to profile supporters as well, or find supporter profiles so that people who are walking with a loved one on the cancer journey can find wisdom and support as well.
I think that the most important thing I have learned, that I feel is hugely important to my thriving into the future, is that passion is life force. I have had many occupations, both paid and unpaid, that mattered to me. When I was a single mom with a huge responsibility to (in my mind) sacrifice creative passion to practicality, I failed to thrive. With lack of passion, and with constant, relentless stress, my body was too depleted to fight the beast when it invaded.
Today, the day after Thanksgiving, I enjoyed time with my daughter, her friend and her friend’s dad. We saw “Tangled” which was just delicious! I enjoyed it immensely, and when I got home I happily greeted my computer, ready to roam around looking for good stuff, and ready to talk about it.
All work and no play is no fun and not good for anyone.
The perfect work is the one I’m glad to leave play to come home and do!
If any of you, my readers, discover another gem, please tell me! I can’t wait to post about it right here.
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
The day of my cancer immersion (Monday) I was talking with my new friend Norine, and she expressed frustration that she was not feeling better faster. She acknowledged that she felt “a bit blue”. I understand this so well! After the heroics, there is the plodding back into life as usual, except that usual is [...]
The day of my cancer immersion (Monday) I was talking with my new friend Norine, and she expressed frustration that she was not feeling better faster. She acknowledged that she felt “a bit blue”. I understand this so well!
After the heroics, there is the plodding back into life as usual, except that usual is not what it was before. The hordes of supporters get back to thier own lives, and the well-wishers relax a bit, seeing that you’ve successfully weathered the storm. It is not uncommon for the blues to set in, as we adjust to our post cancer lives.
So why is this up for me right now? Maybe because the process continues to be cyclical. There’s the first bounce back, after treatment is over. Then, settling in to survivorship. After settling into that, I now find myself back into the world of cancer awareness, advocacy, research, other people’s stories, and suddenly the thing I hardly thought about at all is constantly on my mind. Concerning myself with educating people about IBC is bringing me back to how I was snatched from the lion’s mouth myself, thanks to a truly excellent team of doctors who had IBC on thier radar. The last few days I have been grappling with the fear of recurrence, as my brain is steeped in the statistics I so successfully ignored when I was being treated. Suddenly I’m worried about blood tests maybe I should be getting that I’m not. Every little ache and pain takes on huge significance. As I write this, I am remembering my last freak out, which was certainly more warranted, because I was in the riskiest time. Dr. Brown practically had to give me a shake, as she said with a chuckle and some exasperation, “Relax! All your doctors are very happy with your test results!” My pathological report was good, my scans were clear, and I was gripped with terror. IBC is known to bite back, and to do it quickly.
So why the freak out now, nearly four years later?
The better my life gets, the more there is to lose. Silly perhaps, but there it is. Many hard knocks in the past have taught me that just when things get good, something bad happens. When I was diagnosed, I decided deep in my bones that this was the last time I was seriously getting hit hard upside the head. This was Persephone’s LAST trip to the underworld dammit, I’m coming out now and staying! At the time I was diagnosed, I was blessed with a very deep faith that all would be well. I didn’t know where that came from. I am convinced that I was simply carried by grace. I told myself that if I got the lesson the teacher would not have to reappear. I don’t know if that was strictly true in the logical sense, but my heart and soul believed it, and I think my body listened. As a result of that decision, my life today is vastly different from what it was. I do things that matter to me. I let my heart direct where I spend my time. I have made the decision not to just leave IBC in the past and forget about it, but to have compassion on those who have yet to be diagnosed, and do my part to see that as many as can be will be diagnosed in time to have a real chance at survival.
So maybe, because my life is so beautiful to me now, I distrust the changes that I have made, and have backslid into fear. My life used to run on fear. My home was full of fear, my past was full of fear, I was afraid for my children, afraid for me. Fear is an old habit that dies hard. To get well I chose love instead.
I have to continue to remember what a powerful choice that was. I need to keep choosing it every day, because this day is all any of us have really.
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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My bedside companion in 2007
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