Is yoga therapy? For me it is. It is good for me in a number of ways. It was good before I got sick, and it is good for me now whenever I take the time to do it. It was especially helpful after I had surgery. My doctor was delighted and amazed at how [...]
Is yoga therapy?
For me it is. It is good for me in a number of ways. It was good before I got sick, and it is good for me now whenever I take the time to do it. It was especially helpful after I had surgery. My doctor was delighted and amazed at how back I got my range of motion! At this time there is no difference in how I can move my left arm (the one affected by surgery) and the right. There is also very little difference in strength, although I have some lymphedema in the left arm. The lymphedema occurred for the first time when I got distracted and neglected my practice of yoga.
Here is why it’s good practice:
1. It is meditation, for folks who are challenged to meditate. The poses require concentration to do properly, and the breathing is very settling. I believe that yoga provides the same benefit for me as sitting for meditation. It is true also that the practice of hatha yoga is said to make the body comfortable for meditation. Either way it is a win/win.
2. Yoga brings my full awareness into my body. I am more aware of all of me, my spirit inhabiting my body and everything going on it it. I am more likely to take care of issues before they start if I am doing yoga.
3. Yoga is just plain good for me. It is one more expression of valuing myself. My balance, flexibility, and strength are improved when I do yoga regularly. The benefits are more than the sum of their parts!
4. When I am doing yoga regularly, I suffer fewer odd aches and pains. When I feel rotten in general I get paranoid and off center, fearful of the beast coming back. This is something that survivors deal with all the time. The fewer odd aches and pains I am subject to, the less anxious I am! I think also that the awareness I have will make me notice sooner if there is really anything amiss.
5. Yoga, practiced vigorously, is good for your heart. It qualifies for the type of exercise survivors need to decrease the likelihood that our cancer will recur.
6. Yoga makes me sleep better. It also makes me require less sleep. Now that’s efficient!
There are yoga centers everywhere, some good some not so good. It’s important to feel confident and at ease with the person you are learning from. There are also a lot of great videos out there. I mostly taught myself and then go to classes every so often to make sure I’m doing it right. I also love the yoga program on my Wiifit!
For now I’m going to follow my own advice, and sign off so I can do some yoga before I go to bed!
The new year is upon us, and I feel that I hardly skipped a beat. Where did all that downtime go? What downtime? Kids are back in school, and once again I am trying to decide what to do first each and every day. Always several too many choices. This is the downside of a [...]
The new year is upon us, and I feel that I hardly skipped a beat. Where did all that downtime go? What downtime?
Kids are back in school, and once again I am trying to decide what to do first each and every day. Always several too many choices. This is the downside of a “composite career”. Or, as Jean says, “a beautiful patchwork quilt”. This is my work and home life, patched together out of the things I find most meaningful.
I had kind of a down day today, because I am frustrated by the remnants of chemo-brain that still make it hard to juggle the many interests that I do. I like things like this. This is my dream life, really. Some work at the hospital, some theater, some massage therapy, doing my mom thing, blogging, advocating, learning, researching, attending to my own evolution. It’s satisfying, it’s interesting and well….
It’s complicated! Too many details to keep track of, too many things to forget. My smartphone was stolen recently, and my whole house of cards fell apart! I had hailed my droid as the solution to my organizational woes, and it is, as long as I don’t lose it!
I got an email from my supervisor at the hospital about some details I didn’t get right, and I felt crushed. I had far more of a reaction than I would consider appropriate for a couple of wrong stickers and a missing form. I think I just had a “poor me” moment. Chemo brain, dammit. Then it was a “you loser” moment, from ‘way, way back. Truly, I know better than that.
Dropping a ball or two, or forgetting to cross a “t” is only an issue if I do the same ones again. Part of coping with chemo brain is learning how to back things up so I don’t have to rely on my memory. So I guess some new checklists are in order, and a back up system for my smartphone. I resent having to adjust to having “a brain like a sieve” to quote my kids. I used to have a memory that never failed. I used to have a strong left arm too, but oh well. I’m still here, and I guess I get to gripe once in awhile. Griping is cathartic if I don’t make a habit of it.
Going to take my cranky self to bed now, and pray for my friends who have worse things to complain about.
I remember those days. One day, during chemotherapy, I just couldn’t get comfortable. No matter what position I settled into, sleep eluded me, and wakefulness was no fun. I stumbled out of the bedroom and out into the kitchen where my boyfriend was puttering, and told him I just couldn’t take it! I was sick [...]
I remember those days.
One day, during chemotherapy, I just couldn’t get comfortable. No matter what position I settled into, sleep eluded me, and wakefulness was no fun. I stumbled out of the bedroom and out into the kitchen where my boyfriend was puttering, and told him I just couldn’t take it! I was sick of it!
He patiently listened while I told him what was bothering me. He didn’t try to fix it, he didn’t try to make it go away or tell me everything was going to be ok. He just listened. After that, I felt better.
There were other times as well, many of them. I learned to keep a few tricks up my sleeve for those days. These are the things that kept me going, one weary step after another to the finish line.
1. Distraction. I had several really good reads stashed. When I was on Taxol, my eyes would be really bad for a few days, and I remember affectionately being out with my dear friend Christy and buying another pair of readers to put on top of my regular specs. It worked! I looked funny, but I could read. Good movies are another welcome distraction. Funny ones are especially good, but whatever I could get lost in was great.
2. Get support. Good ol’ Flo, my buddy, would get my tearful calls. She would commiserate (been there, had that stuff, yup, it does feel like Drano in your veins, it’ll ease off soon) and her husband Don would call out in the background, “This is TEMPORARY!” My mom was good for that too, although it was hard for her. Some folks weren’t. My significant other at the time would get frustrated that he couldn’t do anything about it. I didn’t call him. I let him do other stuff for me (like make me laugh) but not usually the “I’m so miserable” call.
3. Nurture your soul. Whatever feeds your heart, deep down, will surprise you with the energy you have for it! I got out my paint brushes for the first time in 20 years. It was wonderful!
4. Give yourself a pep talk, and let others give you one too. Remind yourself of how far you’ve come. Even if you’ve only done one infusion out of eight, that’s one down and one less to go. Make little black boxes and check them off if it helps. Whatever it takes so you can see progress will keep you motivated.
5. Read, listen to or watch something really inspiring. I used to keep a copy of “Remarkable Recovery” under my bed, in easy reach. It was full of stories of people who had recovered beyond expectations, in a number of ways from a number of illnesses, including rare and aggressive cancers.
6. Be taken care of like you would care for your beloved child. Cozy blankets, hot chocolate in bed, whatever makes you feel nurtured, body and mind. Get a gentle massage from someone who is skilled and careful. Have someone who is caring for you make you something delicious.
7. Make plans for all the great stuff you’re going to do when you finish treatment! Daydream, make lists, whatever puts the future without feeling rotten within reach.
8. Have someone take you to a beautiful place that restores you, like the beach or a beautiful garden. Or, if you’re well enough, pack a picnic and take yourself!
9. Give yourself small rewards. I used to go get a Jamba juice after every infusion, if Flo hadn’t already brought me one!
10. Read all the loving messages you’ve received on cards, on the internet, and anywhere else. Let them remind you how supported you are.
11. Make your own list, and make it full of choices. Do it while you’re not feeling like you just can’t take it anymore! Include very easy things so there is always something to do that could make it easier to move one more step forward.
12. Pat yourself on the back often! This journey is not for the faint of heart! You didn’t choose to be on it, but you’re a trooper for staying the course.
Any more ideas? Send them on!
My cancer was very hard on my children. The tough part about that was that I was not strong enough to give them everything I wanted to, to help them cope with it. Remembering the dream I had about Felicia crying and crying, a bottomless well of grief as it seemed, I really wonder what [...]
My cancer was very hard on my children. The tough part about that was that I was not strong enough to give them everything I wanted to, to help them cope with it.
Remembering the dream I had about Felicia crying and crying, a bottomless well of grief as it seemed, I really wonder what it is like for a young child. My son, who was nine at the time, went from irascible and boisterous to quiet and well behaved. He acknowledged to me later that he was scared out of his mind. My daughter acted angry all the time, and berated me,
“Ever since you got cancer all you care about is yourself!” Her little seven year old soul found it easier to believe I was being selfish than to know how sick I was.
Obviously, I had to take care of myself, or I could not hope to be around to raise them! It was heartbreaking.
So, how can we support our children when we are coping with cancer treatments and everybody in the neighborhood is caring for them?
I got my children into therapy, and I am glad that I did. I discovered that my children did not want to burden me with things that bothered them, because they did not want to cause me stress. Their father and I are divorced, and unfortunately, meaning well, he encouraged this. Therapy was a safe place for them.
A friend of mine sent a book that was also helpful, by two sisters named Abigail and Adrienne Ackerman, called “Our Mom has Cancer”. My daughter read it over and over.
What I did was hold on to our bedtime ritual no matter what else was going on. I have always been a working mom, so our bedtime was special. Each child had his or her own special songs. My son liked gentle nerve strokes on his back, and “one more shiny minute” (that meant two!). My daughter had different songs, and her own ritual.
During the long months of treatment, if nothing else I managed the bedtime ceremony. The two times I was too sick to do it were the worst part of the journey.
Now, three years later, I know they have been affected, but they continue to do well. They still see a therapist every so often. They are accustomed to me taking a rest in the afternoon if I need it. My daughter laughs now about calling me “baldy” during those hard days. Now, at 11, she is very kindhearted. My son is his old irascible self, and he still crawls in for a cuddle in the morning (don’t tell his friends!)
I think it is important to recognize that maybe we can’t give our children all the support they need while we are engaged in fighting our cancer. There are resources out there. So much of dealing with cancer is saying “yes” to help, whether just for us or for our families.
The goal is to survive to see our kids grow up. To do that we must take care of ourselves, and that includes accepting help to care for our children, both their little bodies and their precious spirits.
Why do I sometimes embrace the pain of life without allowing myself the pleasure? When I was diagnosed, it had been 20 years since I had been on a stage. It had been longer still since I picked up a paint brush. I hadn’t taken a walk on the beach for months. Rediscovering these things [...]
Why do I sometimes embrace the pain of life without allowing myself the pleasure?
When I was diagnosed, it had been 20 years since I had been on a stage. It had been longer still since I picked up a paint brush. I hadn’t taken a walk on the beach for months. Rediscovering these things brought me back home to myself. In the weeks before my mastectomy, I painted my room purple, so I could bask in my favorite color while I recovered.
The day after surgery, I began a piece of art with a Sharpie. I thank my lucky stars that it was not my right side that was compromised!
Just after I began radiation treatments, I auditioned for the part of the White Witch in a local production of “Narnia”. I had very little energy, and I saved it for rehearsals. I worked out my cancer angst rampaging around and turning little creatures into stone, and cackling madly! Did I feel worse for it? No! It was SO MUCH FUN!
What’s the big deal about fun?
Pleasure and fun make me feel the thrill of being alive, and gratitude for it. Fun is exhilarating. Exhilaration means endorphins, the body’s own painkiller. It’s wonderful medicine.
Things that give us pleasure take us to that place where time stops, and we can become lost in what we’re doing, hypnotized, oblivious to pain or worry. When I’m doing mindless tasks that I don’t enjoy, the clock ticks away slowly, but at the end of the day I feel that time has slipped away between my fingers. When I am completely engrossed in something wonderful, every moment is timeless. I am utterly and completely in the present. This brain state is known to be a healing state.
I certainly felt that as I sought these experiences, I came back to a life I had forgotten I had, to joy that I had forgotten I could feel.
Where my life had felt like I was trying to climb out of quicksand, now it felt like my life was something worth fighting for.
Simple, physical pleasures can make pain fade into the background. When I was receiving chemotherapy, and my body hurt, I was blessed to receive a massage every week. I will never forget the generosity of my colleagues at Mills hospital who came week after week and gave me massage; Jim, Lee, Mike, and my dear friend Susan who came all the way from Pleasant Hill and gave me the comfort of touch. During the hour I received, the aches went away.
Cuddling with my children, reading them a story, or singing them a lullaby took my focus away from illness and brought it right into the stuff of life, right here, right now.
Even now, when the spectre of a life cut short is not so directly over my head, I notice that when I neglect these pleasures I don’t feel so well. I feel tense and stressed when I don’t make art, sing, or take a stroll on the beach once in awhile. When life feels like it’s all work and no fun, it’s time for an adjustment. Once I shift my priorities, I actually have more energy and am more productive.
I also believe that what is most satisfying is usually something of value that I can offer to the world. When each of us expresses most truly what’s unique to us, we find our niche, and the world is a better place for our being there.
What’s really good for me at the deepest level is a win-win for everyone in my world, and my cells know this.
My Caringbridge blog was good for me. I looked forward to blogging. When I stopped feeling that I had anything to write there, I slowly became susceptible to the blues. Picking up my blog again, in a new form, makes me happy.
What makes you happy?
You may have noticed my new icon to the right, the link to Army of Women. This organization is the brainchild of Avon and Dr. Susan Love, and it’s purpose is to end breast cancer by learning how it starts in the first place. This is a question researchers have been asking, but finding people [...]
You may have noticed my new icon to the right, the link to Army of Women. This organization is the brainchild of Avon and Dr. Susan Love, and it’s purpose is to end breast cancer by learning how it starts in the first place.
This is a question researchers have been asking, but finding people to participate has been the main obstacle. To find out the answers, researchers need no less than an army!
If you have never had breast cancer, you are needed. If your mother, sister, grandmother, or any other close relatives have had breast cancer, you are needed. If you are fighting it you are needed. If you are a survivor, you are needed!
We are all needed. Women, men (yes, men!) survivors and everyone else, the research that will answer the question will take an army.
If you join the Army of Women, you will be invited to participate in research, but are in no way obligated. Being part of the Army of Women means that you stay up to date on what’s happening in the research world. You can be part of it at whatever level you want to be.
I’ve joined the Army of Women. I’ve joined it without hesitation, for my sister, my friends, my mom, so many women and men that I love. Most of all I joined for my beautiful 11 year old daughter, Felicia. I am imagining a world where she can grow up free of the fear of breast cancer.
For more information, click on the purple Army of Women link on the right. Please join us! You are needed!
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.
You can find all kinds of information on the web, and in your doctor’s office, about what chemicals you are being treated with and what they might do to you. Chemotherapy at first struck dread into me, thinking about what it would do to my body. I wanted to do the things I had always [...]
You can find all kinds of information on the web, and in your doctor’s office, about what chemicals you are being treated with and what they might do to you.
Chemotherapy at first struck dread into me, thinking about what it would do to my body. I wanted to do the things I had always done, to try to minimize the harm and keep my body in balance throughout, at least as much as I could.
Chemotherapy is a wild, crazy wave, and my job was to ride the crest of it until it broke. Certainly I wanted to protect my healthy cells, but I wanted those chemicals to knock the %*@!! out of the cancer that was threatening my life. It was a battle for control of my body. It was a game of chicken between those purple ewoks and wookies and the angry little bald man. My body was the stage for this drama. Never mind balance, that didn’t apply here!
I understood that uninterrupted treatment was the key to my survival. By the fourth infusion, I finally understood that to stay on that wave I had to be as comfortable as possible. Steroids with the infusion, ativan at night. Pain killers, anti nausea medicine, laxatives, stool softeners, all my normal bodily functions had to be slapped around to keep me on that wave. I had a vicious cancer, and one delayed treatment for whatever reason would give it a chance to bounce back.
When I finally understood that this was the way of it, my strategy became very clear. Stay on the crest of that wave, don’t fall off, support my body under the onslaught, and let every ounce of energy I had be harnessed to assist the treatment.
The first big breakthrough was, pain and discomfort leads to stress, which weakens the body more. By the fourth infusion I was taking all the meds they gave me, at the first hint that I might need them. The more comfortable I was, the more my body could use the energy I had to fight the beast.
I conserved my energy for the same reason. I did things I loved, like walking, improv, reading, puttering outside. Things that were an energy drain I declined, and people who were toxic to me I kept out of my space, sometimes with help from others.
I said yes constantly, as I have discussed in another post. When people wanted to pray, bring food, take care of my children, or tidy my home, I welcomed it all. I also said no, just as consistently, to anything that would use my precious, limited energy for something that was not important to me. Saying yes opened my heart. Saying no taught me to trust myself.
I used complementary therapies to minimize side effects, and to protect my healthy cells as much as I could. I used imagery to protect my heart, to watch the tumors shrink, to build white blood cells and hemoglobin. I never had to miss a treatment because of low blood counts.
Dr. Brown told me to “eat what looks good to you” and I did that. I also developed my once a day nutrition shake to make sure all the bases were covered.
I took advantage of every resource. My colleagues gave me massage weekly (I remain so grateful for this!), I received acupuncture, and I had a Healing Partner who provided Healing Touch for me every week for 6 months.
I wanted to be sure I was really showing up for all this. I wanted my whole being to know that I was engaged in my life, that I was passionate about it. I took advantage of the counseling that was available at Healing with Hope. I blogged like mad at Caringbridge, and celebrated life. I painted my room purple.
Do you have to do all this to weather the chemo storm?
No, not at all. Do it the way you do it. Just keep three things in mind, if they seem good to you.
1. Use all the medications they give you to be comfortable. This is not the time to be stoic! A comfortable body heals better and faster.
2. Do the things you really love with the energy you have. That way you actually get some.
3. Let people help. It blesses them just as much as it blesses you, if not even more.
If this is you right now, know that my thoughts are with you, and you will get through it!
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
Today I realized that I had neglected my self care. I knew this because I discovered that I had become out of touch with myself. This discovery came when I took the time to settle in again. Self care is not something I do because it is the right thing. I don’t do it because [...]
Today I realized that I had neglected my self care. I knew this because I discovered that I had become out of touch with myself. This discovery came when I took the time to settle in again.
Self care is not something I do because it is the right thing. I don’t do it because I am terrified of recurrence, which is of course a legitimate fear. I don’t do it because somebody wags a finger at me and says, “please take care of yourself!” It certainly is a challenge to do it. I do forget, lose track, neglect my own needs for something I feel to be more important, like an idea that has run away with me, handling some kind of family upheaval (my children are at each other’s throats again) or omigod so much to peruse on the internet that can’t wait until tomorrow.
So why? Why is self care so important, if not for the reasons I have just stated?
Some months ago, some of my survivor friends and I were discussing self care and why it is so hard to do, why we fight against ourselves to do it. All kinds of reasons came up for not doing it. We were all aware that it was vitally important if we wanted to stay well. We decided to do some guided imagery. We entered into our heart space to explore. What came out of that journey is the picture I’ve included in this post.
For me, self care is love in action. When I care for the temple that houses my spirit, my spirit is happy. When my spirit is happy, I will expand, take risks, be creative, give back. When my heart is open I will find my own treasures there, and share them. When my body is rested, well fed and tranquil, my mind is not so cluttered and I can be patient and focused. In this way I have more to give to others and to myself. In this way everything I give to others is mine also.
“self care is the key to the treasures of my heart”
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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