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
Any of you boomers out there remember the song, “What a drag it is getting old” by the Rolling Stones? Nowadays when I think of getting old I get so psyched about it! I was young when I got cancer, truly. I was only 45, and I felt as if I was in my prime. [...]
Any of you boomers out there remember the song, “What a drag it is getting old” by the Rolling Stones?
Nowadays when I think of getting old I get so psyched about it! I was young when I got cancer, truly. I was only 45, and I felt as if I was in my prime. I had made a lot of really great, important changes in my life and it felt like a renaissance of sorts. I had plenty of stress to deal with, but I also had possibility. I felt that I had the youth and stamina to start over after a nasty divorce. I was re-creating myself.
I didn’t know that I was just shedding some skin. The real re-creation happened later.
My youth ended in 2007, and I am now squarely settled into middle age. Cancer treatment brought early menopause, and the loss of a breast cured me of equating my value with being “hot” as my boyfriend at the time thought I was. This is not at all a bad thing, although it took some getting used to.
The most important thing for me about getting old is that I get to do it! My life could have ended in my youth and strength, and I have been blessed to have the opportunity to get older and complain about it.
Sometimes I attribute things to lingering side effects of treatment that really belong in the “getting old” category, and vice versa. I guess it doesn’t really matter. I have to pay attention, I have to write things down, I have to get enough sleep. It’s kind of nice, not being under pressure to be the firecracker that I was. I made people tired just watching me! I don’t do that anymore, although the 2nd and 3rd graders would probably call me a little crazy, and all they know about my age is that I’m older than Jeremy and Kari. If I go home and take a nap after playing with them so be it, no one’s the wiser. Naps are nice. I like to take them.
I was older when I had my children. Tom was younger. He’s 50, I’m 49, and we have five children between us. In our home there are two children (mine, now ours) and every so often we get to see his eldest daughter, who we are very close to, and our delicious grandbaby. My kid have a nephew at 11 and 13! I have another daughter to love and a beautiful grandson.
Sometimes I complain about leftover cancer treatment stuff, like achy joints, fatigue, my brain that resembles a sieve, etc. He tells me, “That happens to me too, honey. We’re just getting old!”
My dear friend Anne is 87 years old. She has a sister in her 90′s, who is still going strong. Anne walks with a cane (she calls it “my friend”) and she is four feet ten inches of pure piss’n'vinegar. She wins bets against me because “I know and you don’t”! She still does the things she loves to do. She cooks a mean rack of lamb! She is a wise lady and a blessing to me. She is not done with her dear husband of 55 years, Glen. She’s not done with the people in her life that she loves. Glen and I are thrilled that her early stage lung cancer can get a big zap one time, with new technology and precise measurements, and her cancer will be gone and her lung will be spared.
Anne is just not done getting old!
One thing I especially enjoy about getting old is my new habit of going more slowly, so I enjoy things more. Once, in my wild youth, I rode a bicycle from Seattle Washington to San Diego, California. I saw the entire amazing, beautiful Pacific Coast at about 10 miles an hour.
It just doesn’t get better than that.
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.
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”
I had visits with two women today who had to push for an accurate diagnosis. I drove into San Francisco to meet Valerie, who was diagnosed with IBC just a month before I was. Several doctors told her it was an abscess. She had numerous mammograms that showed nothing, and her breast was turning red [...]
I had visits with two women today who had to push for an accurate diagnosis.
I drove into San Francisco to meet Valerie, who was diagnosed with IBC just a month before I was. Several doctors told her it was an abscess. She had numerous mammograms that showed nothing, and her breast was turning red and swollen before her eyes. She pushed until they knew what it was, and then she searched until she found someone who understood Inflammatory Breast Cancer. She told me that I was the first IBC survivor she had found who was diagnosed promptly and accurately. It was a full morning, and she gave me lots to think about. If you do a Google search on Valerie Fraser, you’ll see what a pioneer she is. She didn’t wait for someone else to give her the last word on her disease.
As I become more and more connected into the cancer advocacy world it is becoming clear that far too many people are not getting diagnosed promptly, and the story I keep hearing is that people know something is wrong. They know, and their doctor tells them not to worry, to wait. I naively thought that this was most common with IBC, and that other cancers were diagnosed more quickly.
After having breakfast with Valerie I headed back to San Mateo to teach my kids. Then it was to California Cancer Care to stand with my dear friend Anne for her second appointment with her oncologist. While I was waiting, I ran into another cancer traveler. I recognized her by her “fuzzy head” and we had a lively conversation. She had known something was wrong. She waited five months for a proper diagnosis! She wonders if her ovarian cancer would have been Stage 1 instead of Stage 2 if the doctors had taken her concerns seriously.
I would love to think that this stuff doesn’t happen anymore, but it does.
The problem is that none of us wants to believe we have cancer, so it can be the path of least resistance to not worry when deep down we know something is wrong.
I really don’t know where I’m going with this rant. I’m expressing frustration. Can the “average Joe” know all about stuff the doctors are supposed to know? It is also true that doctors are human and can make mistakes, but I take issue with a doctor who decides what a problem is before eliminating every possibility.
It still comes down to advocating for ourselves, knowing our bodies well, and taking charge of our medical care.
And, scary as it is, squirmy as it makes people, I still tell every woman I meet.
It’s been a long day.
As I reflected on the caringbridge entry I posted yesterday, I remember vividly making a very deliberate decision. When I was diagnosed, I sat myself down and told myself that I would make a practice of saying yes to whatever anyone wanted to give me during this undertaking. I would do so whether I thought [...]
As I reflected on the caringbridge entry I posted yesterday, I remember vividly making a very deliberate decision. When I was diagnosed, I sat myself down and told myself that I would make a practice of saying yes to whatever anyone wanted to give me during this undertaking. I would do so whether I thought I needed to or not.
It seemed to me that I could use some practice allowing others to help me. I knew I wasn’t very good at it, and I knew I didn’t even have a clue what I needed.
I just decided to say yes, just to get used to saying it.
What happened was beyond amazing, it was exhilarating, it was heartbreaking, it was more deeply healing than I could ever have imagined. I had to open the doors of my heart as wide as they could open to keep saying yes. The more I stretched, the more blessed I felt, more tearful, more in awe, carried by a wild, rushing wave of grace.
Now, three years and seven months since that wretched infusion, I smile and remember. I try to remember the feeling now, when my life has resumed, my kids are growing, my focus scattered most days. I almost feel nostalgia for the suffering, because, in Kahlil Gibran’s words, “the deeper that sorrow carves into your being, the more joy you can contain.”
During that period of deep suffering I felt some of the most indescribable joy I have ever felt, joy that made me sing and cry at the same time, overwhelmed by the breeze on my cheek and the smell of a rose.
Here is the continuation of last Saturday’s post. As you can see, there was a crash! Wednesday, April 11, 2007 5:45 PM, CDT later…. blech, blech, blech. Thanks mom, for letting me bellyache and whine when it gets miserable. This one came on top of the first 3 with a cold and some antibiotics for [...]
Here is the continuation of last Saturday’s post. As you can see, there was a crash!
Wednesday, April 11, 2007 5:45 PM, CDT
blech, blech, blech. Thanks mom, for letting me bellyache and whine when it gets miserable. This one came on top of the first 3 with a cold and some antibiotics for good measure… I feel truly rotten. I keep telling myself, it’s the last of this one!
I hope Steve is right, that since the bad part started sooner, maybe it will be over sooner, especially since I may have a less fierce shot tomorrow, and I don’t have my energetic little sidekicks to take care of.
Thanks so much for caring, everyone. I’m going to take my weepy little self to the sofa, and…
just got the knock, dinner arrived, thank you Donna, you have no idea what a difference this makes. I have to eat to make the nausea subside, but it’s hard to get motivated. Thank you! I look forward to seeing what’s in the bag.
And in the mailbox, Becky’s weekly “healing card”. Oh Becky, your timing is impeccable.
one day at a time…
Postscript, present time:
This fourth infusion was in fact the second worst(!), but it was bearable with help. I look back on it and wonder where I would have been without all the wonderful people who helped me. Healing cards once a week like clockwork, others managing my energetic children, food appearing at my door…I often wondered during those times what people did who didn’t have people to help them.
After this experience I had a new appreciation of how we humans really do need each other, and for how much a difference something that seems small can make.
The thing that amazed me most of all was that I didn’t have to organize or delegate at all. People did what they were moved to do, and each time it was perfect.
Now when I am in a situation where I could help someone, I ask, and if they let me, I do.
I once heard a story about a young girl with IBC. She was embarrassed to talk about the rash on her breast. She did not get diagnosed and she did not survive. Nasty opening sentence, right? Well, cancer is not nice, it’s not pretty, and while we don’t have the answers on what causes many [...]
I once heard a story about a young girl with IBC. She was embarrassed to talk about the rash on her breast. She did not get diagnosed and she did not survive.
Nasty opening sentence, right? Well, cancer is not nice, it’s not pretty, and while we don’t have the answers on what causes many cancers, we can and must do all we can to make sure they are detected, and as early as possible.
One of the most important ways we can make this happen is to teach our children, and ourselves, to be on good, intimate terms with our precious bodies.
One of my readers asked, is IBC hereditary? Many people want to know what puts people at risk, so they can either do something about the risks or reassure themselves that they are doing all the right things. The fact is that for many of us, a cancer diagnosis blindsides us out of nowhere. Very few of us are watching out for cancer. We don’t want to think it can happen to us.
Being scared all the time is no answer either. What we can do is pay attention to our bodies the way we care for our children. If our child is cranky, we see what they need and give it to them. Is it sleep? Is it food? Is it a hug or a cuddle? Do they need to run off steam outside because they’ve been cooped up all day?
Instead of seeing our bodies as that which produces (the work, meeting the deadline, the taxi service for offspring, etc) we can choose to enter into partnership with our bodies.
I had that conversation with my daughter the other day. I told her how important it was for her to get to know her breasts. She’s growing into a young woman before my eyes. So many girls her age are wearing pink ribbon bracelets, and when I ask them what they mean, they say “breast cancer awareness”. When I ask them what that means to them they get squirmy and say, “I dunno!”
Are we teaching our children to know their bodies, and be comfortable talking about them? Do our daughters and sons know they can come talk to us if they notice something not quite right about their “private parts”?
What kind of example do we set for them? Do we eat good food, mindfully, enjoying each others company? Do we get enough exercise? Do we go to bed when we are tired?
In the two months before I was diagnosed, I had pain and tingling in my left arm. I was a professional massage therapist, and smarty me, I figured I had been working too hard and was developing thoracic outlet syndrome. I began stretching like mad, but it wasn’t working. Instead of inquiring, taking the time, tuning in to my body as I knew how to do, I told myself to get back to my yoga. My hands got cold (they had always been characteristically hot..my clients said they were like heating pads) and I assumed that stress and lack of sleep was the culprit. My department had just downsized, and I had almost lost my job. I didn’t have time for a crisis.
When it became clear what that little rash was, all of it made sense. It was a good thing I reacted to that tiny rash and did something about it. Many women don’t, they just figure it’s a rash and will go away.
I am trying to teach my rebellious, on top of the world indestructible children to honor the needs of their bodies, and they do get tired of it. However, repetition is the mother of skill. They may think I am annoying (that’s my teenage son’s favorite word to describe me) but deep in their little noggins it will reside, and when something is wrong they will know.
I had large breasts when I was a teenager. My name was on the bathroom wall. A boy two grades older than I was embarrassed me repeatedly. I wish I could have figured out that they were mine, they were beautiful, and that knowing them well and examining them once a month was appropriate and right, not shameful.
After nursing two babies and letting their heads rest on my soft chest, I really missed my left one when it was gone.
Let’s teach our children now, when it matters most.
My friend Lee just sent me this link. What a fabulous thing! One of the things my mom did for me when I started treatment was to get me a cleaning lady. She decided to do it and didn’t doubt for a second that it would be a huge help, and it was. A friend [...]
My friend Lee just sent me this link. What a fabulous thing!
One of the things my mom did for me when I started treatment was to get me a cleaning lady. She decided to do it and didn’t doubt for a second that it would be a huge help, and it was. A friend of mine sent Yolanda to me, and she was without a doubt my my angel.
I felt badly for laying down on my tush while she scurried around my messy house, but she sang as she worked, and she reprimanded my children ever so kindly for letting their rooms get so out of control. If things got lost, it was Yolanda’s fault!
Because I had her, I could rest. It took a huge amount of stress off.
It’s one of those things I would highly recommend in any case for anyone going through cancer treatment. If you can’t afford it, here’s “cleaning for a reason” to the rescue!
Cleaning for a Reason
If you know any woman currently undergoing chemotherapy, please pass the word to her that there is a cleaning service that provides FREE housecleaning – once per month for 4 months while she is in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her zip code area arrange for the service. This organization serves the entire USA and currently has 547 partners to help these women. It’s our job to pass the word and let them know that there are people out there that care. Be a blessing to someone and pass this information along.
I’m so glad this service is available. Kindly put this in your mental rolodex in case someone you love faces cancer treatments, and if you’re running your own triathlon be good to yourself and call these folks. That’s what they’re here for, and you’ll be glad you said yes.
Hello Out There! Are you a cancer survivor, or do you know a cancer survivor? I have a project I am obsessing about, and I really think it can help a lot of people. It’s the Victory Rooms project, and you can see that the page is already up there and ready to go! What [...]
Hello Out There! Are you a cancer survivor, or do you know a cancer survivor?
I have a project I am obsessing about, and I really think it can help a lot of people. It’s the Victory Rooms project, and you can see that the page is already up there and ready to go!
What I have in mind is virtual rooms full of survivors, one for each diagnosis.
When I was going through treatment, I was the only person with Inflammatory Breast Cancer I knew. Now, because of our fabulous internet, I know quite a few. We’re a global community now, so a few people in one spot becomes a multitude when everyone is in one place, even in the cyberworld!
What if, when I was first diagnosed and my mom was freaking out about statistics etc., we had been able to open a page, see photos or images representing survivors, and could just keep scrolling and scrolling and scrolling?
Clearly this has to be a collective effort. Will you help?
What I would love is:
*your name, first only or full name, pseudonyms are ok too as long as relevant information is accurate
*an image or photo, happy photos especially wonderful, an image if you don’t want to go public
*Your birthdate, date of diagnosis, diagnosis particulars(ex: 2/07, Stage IIIC Inflammatory Breast Cancer, Her2+)
*Your current status i.e. in remission, NED, metastatic (I met a woman recently who had been surviving well for 17 years
with advanced metastatic BC)
*anything else (feeling fine, ran a marathon, skipped town and joined the circus, ambassador for IBC awareness)whatever we
might want to know that would give hope and bring a smile. By the way, those are real examples!
If you would like to inhabit the pages of the Victory Rooms (oh please say yes!) kindly send all of the above to my personal email address, firstname.lastname@example.org. I am hoping to be inundated!
We’re all in this together. Thanks for reading!
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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This blog is a labor of love, and it has to fit into the nooks and crannies of my crazy, busy, wonderful life.
The few ads, affiliate links and other goodies help me enjoy getting my blog groove on here without feeling like I'm playing hooky, since I have dependents and I'm supposed to be at work! I also share the love with my favorite breast cancer research organizations.
Thanks so much!
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DO NOT DUPLICATEAll text and art found on these pages belong to Elizabeth Danu, Copyright 2008 - 2014 unless otherwise noted. All rights reserved. Unauthorized use of any material on this site is strictly prohibited. For permission to use anything presented here, please contact me directly. Elizabeth Danu
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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