Friday, April 13, 2007 11:58 AM, CDT The sun is out, and it’s what I usually call Bleak Friday, but I am not at all miserable, in fact I feel quite well! Just a little queasy, and the solution for that is simply to nosh all day. Not a bad job, considering. This is great. [...]
Friday, April 13, 2007 11:58 AM, CDT
The sun is out, and it’s what I usually call Bleak Friday, but I am not at all miserable, in fact I feel quite well! Just a little queasy, and the solution for that is simply to nosh all day. Not a bad job, considering.
This is great. The first half is supposed to be the worst, and this is it. Smooth sailing now? !!
I didn’t get outside yesterday, it was cold and windy. Lovely out today, though. Time to putter in my garden, just a bit!
Spoke with my family in Seattle, and the kids are having a fabulous time. Martin is with his second cousin, Damien. Those two have been fast friends since they were 3, and no matter how much time passes, they meet again as if they haven’t skipped a day. This left Felicia with Auntie Andrea and Uncle Paul all to herself. Her Royal Highness had a manicure and pedicure ( she described her blue toes with flowers on them, with great glee ), sushi for dinner, and then dessert at the famous Dilletante Restaurant (it’s all about chocolate… and such chocolate!). Today Felicia is with Grandma Anne, perhaps going on a ferry or some such adventure.
I spent yesterday lounging, reading “The Other Boleyn Girl” (thanks again, Andy!) and reveling in my good fortune to be feeling so relatively well.
Never will I take my health and energy for granted again! When I am through with chemotherapy I will gleefully fill my body with all the nutrition it can hold, and spend my energy in celebration of health. While I am on chemo, I cannot take herbs, or large amounts of antioxidants, because chemo is believed to work best in an oxygen rich environment. When chemo is done, my body is mine again!
Then, after surgery, the cancer will no longer be my constant companion. It is hard, living with it, feeling it in my body, always aware of the size of it, even as it shrinks. I am so looking forward to Dr. Metkus wrapping it up in a neat little package and taking it away.
Today I am going to ignore it, because it’s days are numbered, and I’m halfway through the worst. Thanks Steve, for getting pictures of the rugrats on my website, and for calling me every morning on your way to work. It starts my day right, rain or shine.
Love and Blessings,
I have always loved Thanksgiving. It’s a welcome pause to stop and enjoy my family and my many blessings. Thanksgiving of 2007 was poignant, and each one after that is a benchmark. I am another year older, and then there is Thanksgiving! The focus is the turkey, the festivities, family, or perhaps loneliness and hardship, [...]
I have always loved Thanksgiving. It’s a welcome pause to stop and enjoy my family and my many blessings.
Thanksgiving of 2007 was poignant, and each one after that is a benchmark. I am another year older, and then there is Thanksgiving! The focus is the turkey, the festivities, family, or perhaps loneliness and hardship, which good hearted people try especially to ease at this time of year. What’s great about this whole hoopla is that we are reminded to give thanks, and our churches, workplaces, schools and communities build gratitude into business as usual.
What if gratitude IS business as usual?
My whole perspective on this has changed considerably. I am grateful that my children are little stinkers and made me so mad I wanted to tear my hair out this morning. Why? Because when Thanksgiving came three years ago, I was still weak and sick.
When I was undergoing extremely aggressive treatments for an extremely aggressive cancer, my little pistol of a boy was exquisitely well behaved. That was because he was scared out of his mind. That he is an irascible 13 year old is simply beautiful, and I am so grateful for that!
When I had my 36th birthday, my baby boy was five months old. His godmommy had played with him earlier in the evening, and as I rocked him in my rocking chair, singing him a lullaby, he anointed me with all the churned contents of his little tummy. I laughed, got us both to the bathtub and got us washed off, and reflected on what a gift I had just received for my birthday! I had miscarried before this beautiful boy had come into the world, and the privilege of little baby barf was just perfect.
Having faced the very real possibility of not having the privilege of getting old, I am grateful for my wrinkles, my occasional aches and pains, and that I get to be around children a lot. I am grateful for the smell of rain. I am grateful that I can write, that I can sing, that I can be taxi service for my 11 year old socialite daughter.
All of us grumble. It’s human, and it’s comfortable. Gratitude has not always come naturally to me, but now it does. Not a day goes by that I don’t give thanks for my life, and every beautiful thing in it.
Every day on this earth is a gift. None of us know when our time is up. We could be called home at any moment. The lingering memory of my cancer experience ensures that I am keenly aware of this. I am grateful for the exalted and the mundane, the frustrating and the outrageous. Sometimes the joy is so huge I feel that I can’t contain it, nor would I want to.
I am grateful even for suffering. I know what I can endure, and I have a glimpse of how much love my heart can hold.
The Sufi Master Hazrat Inayat Khan said, “God breaks the heart again and again and again until it stays open.”
Blessings to you and yours this Thanksgiving!
We interrupt our regular blog program today for a moment of grief, as your chronicler just read a story that was painful and sweet beyond bearing. As I have been emerging from my cave of recovery and joining the world I see stories that break my heart, and I know how blessed I am to [...]
We interrupt our regular blog program today for a moment of grief, as your chronicler just read a story that was painful and sweet beyond bearing. As I have been emerging from my cave of recovery and joining the world I see stories that break my heart, and I know how blessed I am to be alive.
I just read through a blog by and about a 37 year old mother, who died of Inflammatory Breast Cancer in July of 2008, 14 months after she was diagnosed.
I am so sad that I never met her. I am so sorry for the ache remaining in the hearts of her six children, who still open cards written for them in the months before she left them.
She was breastfeeding her youngest child when her symptoms began. She waited too long.
Damn, damn, damn. It hurts. She was one of too many on a list on the blog I was reading. I read their stories. They were all mommies. They all left children behind.
Survival is bittersweet sometimes.
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.
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.
Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it. When I received my diagnosis, I called her up and told her “the [...]
Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it.
When I received my diagnosis, I called her up and told her “the scoop”. She did not in any way blow the whistle on herself, she did not in any way indicate how she felt about this news. She asked for Dr. Brown’s phone number so she could talk with her personally, and later called me to tell me that she felt “very reassured”.
I was perfectly happy to let my mom be the keeper of scary information. I figured she would tell me what I needed to know, and she did. I focused on managing the treatments and keeping my momentum, because I understood that this was what I had to do. I took care of myself, blogged, let people help me, and attached myself to fellow survivors and patients that inspired me.
I looked into IBC a little more after my surgery. I freaked out a bit then for a few weeks, and then decided that it was a waste of my precious time. My self care program continued to be my focus, and the weeks and months passed.
Now, nearly four years later, I am surfing the net for fellow survivors. I am finding women who were not so lucky as I was, women who waited too long to be diagnosed through no fault of their own, or whose cancer was just that much more of a cussed animal than mine was. I am aware that although I am past the highest risk period, there are no guarantees. I must use every day to good purpose. This is of course something I want to do anyway.
This dose of reality is something I can cope with now. Not so much before, when I just had to keep my eyes on the prize, the chance to see my two beautiful children grow up! Now that the worst of it is over, I am more than ready to focus on doing all I can so that others are spared. Getting the word out about IBC has become an obsession. Finding hope and sharing it has become my life’s work.
Sometimes emulating an ostrich is really not such a bad strategy!
Inflammatory Breast Cancer is very rare, and very aggressive. I am alive today because I went to the doctor right away for something that looked like nothing. The doctor who did my ultrasound knew about IBC, so I had a needle biopsy that day and from biopsy to chemotherapy was ten days. It wasn’t a minute too soon.
IBC is survivable, but timely (and that means FAST, folks) diagnosis and treatment is critical. If you or someone you care about has any of the following symptoms, get to your doctor and persist until you know exactly what it is. This information is directly from the IBC research site that I have posted in my links.
One or more of the following are Typical Symptoms of IBC:
- Swelling, usually sudden, sometimes a cup size in a few days
- Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
- Ridges and thickened areas of the skin
- Nipple retraction
- Nipple discharge, may or may not be bloody
- Breast is warm to the touch
- Breast pain (from a constant ache to stabbing pains)
- Change in color and texture of the areola
If you suddenly develop a lump or mass, have it checked immediately. We have one reported case where a 9x8x5cm lump developed in only three weeks.
Use caution when relying on the interpretations and reports of the mammogram or ultrasound! Inflammatory breast cancer usually grows in nests or sheets, rather than as a confined solid tumor. IBC may not be detected using either mammography or ultrasonography. Increased breast density compared to prior mammograms should be considered suspicious. Remember: You don’t have to have a lump to have breast cancer. (end of import from IBC site)
My own experience was that a quarter sized rash became a raging hot red breast with an inverted nipple, all in the two weeks it took to get from GP to ultrasound. When I had my scan it showed a sheet that was 11(!!!#&*) centimeters in diameter. I was lucky. Too many women are still losing the battle with IBC because no one shared this information with them.
Maybe talking about breasts with someone makes you uncomfortable. Sometimes women get uncomfortable when I share this information. Never mind. If she’s the one to five in a hundred breast cancers that is IBC, she will thank both of us for saving her life.
Please tell everyone you know!
Reading that old Caringbridge entry reminded me again of how grateful I am to my strong, resilient body. It took such good care of me for so long. I was under duress for so many years, I really can’t blame my precious body for letting in that intruder. I met him in a dream, and he was wild. Not smart, but crazy, aggressive, and scary as hell. He was in my house, waving a broom to bludgeon me with. He was only in the front hall. He hadn’t made it upstairs, into the living room, or the kitchen. In my dream, I ran outside in terror to get reinforcements. I knew I couldn’t get him out myself, but I knew that the four men outside would come in and carry him out.
I had that dream in the morning on the first day of chemotherapy. I hadn’t had my PET scan yet, but after the dream I was confident that I was safely at Stage III, only locally advanced. Steve suggested that I attack the wild man with fierce little monkeys. Always ready to run away hand in hand with my imagination, I decided that I didn’t even want to see the scary bald man with the sharp teeth in my house. I imagined him in a vast, empty white space, being slowly put to sleep until he was in a coma.
Then, I changed the image to a beautiful landscape, vast and green, with dozens of little waterways running through it. Marring this scene was a huge, ugly gray slag heap, with two smaller ones next to it. As the Adriamycin and Cytoxan entered my veins, an army of busy little purple Ewoks, chattering and busy, marched in and went to work on those slag heaps. I decided that they needed some bigger, stronger help, so I called in the Wookies. It was a busy scene there! They loaded up the mess that came off the heaps into barges, which were carried away. Every time I had an infusion, there would be a couple of days when my breast would flush, and be extra red. Then it would subside and the sheet in my breast would feel softer and smaller. These tumors went from 11 centimeter and 2 plus centimeters to half a centimeter and less than a millimeter by the time I had surgery. This was the AC. I came up with different visuals for the Taxol and herceptin when that time came.
I was of course concerned about white blood cells. I watched another man get sent home, unable to have his treatment, because his white blood cell count was low. I knew that I could not allow that to happen to me. I could not give the aggressive cancer I was fighting any opportunity to regroup and become resistant. Not one bad cell could survive! So I needed those white blood cells and I needed plenty of them.
Oh, they were so beautiful! I love my white blood cells. They emerge from the rich brown earth (my bones) and take shape in pairs. They are strong and powerful, a male and a female sent out into the world of my body to keep it safe. They look like greek gods, dressed in tunics of white and gold. They are very tall, and they have wings. They are noble, and they are relentless. Any intruder is destroyed immediately with a beam of gleaming light like a thousand suns that comes straight from their hands. If two of them are not enough, they communicate telepathically to other pairs of guardians, until there are enough to surround the threat completely. I still to this day am aware of, and grateful to these majestic and fearsome protectors of my body.
By the fourth infusion, my neulasta dose was cut in half. When I started Taxol and it was neupogen (a slightly different medicine) I needed a reduced dose of that one as well.
I met my objective. My treatments were uninterrupted. My body stayed the course, and I will always appreciate my body for it’s loyalty and patience. I admire it so much for not allowing that terrifying breast cancer past my lymph nodes to escape into my organs and bones. I am amazed and grateful that it withstood years and years of relentless stress before succumbing to a persistent invader. Even then, my body was still there for me, and I finally learned how to be there for her.
My beautiful white blood cells are still there, protecting me.
One of the problems with our current, new age influenced culture is the idea that we create everything that happens to us. If we believe that, we can un-create it, or so the wisdom goes. Even if you don’t necessarily believe that, a lot of folks do, and it can make it hard to be [...]
One of the problems with our current, new age influenced culture is the idea that we create everything that happens to us. If we believe that, we can un-create it, or so the wisdom goes.
Even if you don’t necessarily believe that, a lot of folks do, and it can make it hard to be gentle on yourself.
I have always been health concious, although I have not always done what I know to be best for myself. I certainly pointed a finger at myself at first when I was diagnosed with Stage IIIC Inflammatory Breast Cancer. If only I had been more consistent with exercise. If only I had eaten more vegetables, if only I had left a stressful marriage years before, if only……
I got over that and got committed to surviving. I had some strong beliefs about what would work, and fortunately for me I survived. Did I survive because of the acupuncture, the massage, the therapy, the healing touch, my health shakes, my self inquiry? Or did I survive because Dr. Brown knew what sort of cell type I had and that she expected the cancer to respond to the big guns she fired at it? Was my fantastic response to chemotherapy a result of my holistic East/West approach, was it luck, or the wonderful, compassionate and thorough team of doctors who treated me? In any case I was blessed. If I had a setback whose fault would it be?
Nobody’s! I repeat, nobody’s.
I had a friend in my art and imagery support group who had faced an aggressive breast cancer. She believed strongly in the approach she had taken. When her cancer recurred, she was certain that she had failed. It was hard to watch her beat herself up about it, and I was certain that her self flaggelation was not helping her body to stay strong.
I believe very strongly that self love helps us to be strong. Love strengthens and heals. Whatever beast has intruded on your life, self blame will only give it power. Self blame is a useless, counterproductive activity. Now don’t blame yourself for indulging in self blame! Enough already if you are doing that!
Cancer happens. It sucks. Sometimes it happens again. Cancer happening again does not mean the end. I asked my oncologist what would happen if the cancer I beat once were to return. Her response was that we would beat it again. She’s a research specialist among other things, and in the cancer world new stuff is coming to light all the time. It is true that people still die of cancer. That does stink. However, it is also true that more people don’t die than do on the whole.
Setbacks can be anything. They can be chemo effects that don’t go away as fast as you want them to. A minor or major recurrence can be a setback. I viewed my lymphedema, which surfaced nearly two years out, as a setback. At first I was annoyed at myself for not being more careful. I got over that. It was just a setback, and now my lymphedema is very well controlled. Hey, I’m still here!
If you are reading this today, you are too, and that’s what matters.
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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