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    As I am settling into the blogsphere, I am being initiated into unfamiliar territory, the slimy underbelly of comment spam.

    These spammers are so crafty!  They have their canned complimentary comments that they inundate me with, hoping that I will post their comments along with links to their sites.  The clue I get that they are spam are the following:

    They are highly complimentary without being specific at all.  “I could not have found the information you have provided anywhere else”  or “I really love your blog and am now suscribed, keep up the good work!”  Ah, the proud blogger is pleased until noticing that these exact comments are coming in from multiple sites.

    They indicate a problem which it is imperative that I solve, by publishing their comment.  “Your feed does not seem to be working, is it your site or my computer?”  Answer:  I have subscribed to my own feed on all three browsers and I know they work, thanks so much!

    Another approach is to try to get me riled up.  “Can I place some of your post on my website if I link back to your site?”  No, duh, it’s copyrighted.

    Or, my favorite:   “I have submitted several comments which have not appeared here, is there something wrong with your spam filters?”  Dude, I am the spam filter!

    Why is this relevant you may ask?  Well, actually, pondering why I am so annoyed made me think of how spam gets into my life, and why I hate it.

    Spam can be annoying communications that require a response, which are a waste of precious time that is better used for other things.  Do you have any of this in your life?  I do, although a lot less than I used to.  Spammers use any method they can think up to get your attention, so you’ll buy something, do something for them, or provide a way for them to get what they want.  Do know any people like that?

    What this reminds me of is the importance of valuing my time and energy, whether anybody else does or not.  Of course the irony of this is that the more I value my time and energy, the more others will value it.  The spam filters work better as they identify what is spam.

    My personal spam filters:

    Guilt and shame indentifiers.  If guilt and shame are present in the communication, I’m not playing.

    Resisting snap decisions.  When someone wants me to do something and they want it right now, I insist on taking time before deciding, and I tune into whether I really want to do what I am being asked to do, and why.

    Willpower!  Just because I would like to spend hours noodling around on the internet doesn’t mean it is the best use of my time.

    Supportive people in my life.  These people remind me what healthy, mutually respectful relationships feel like.  I gauge other interactions by this positive experience.

    Caring for Me time.  The more rested, balanced and centered I am, the better the decisions I make about anything in my life.  I make time for real sustenance, not spam.

    Real food is good for you, spam will make you fat and lethargic!

    Real food is friends, creativity, meaningful work, walks on the beach, children (insert your real food here).  A steady diet of real food, with minimal spam, keeps me strong, healthy, and loving life.

    Just say no to spam!

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    This may be a rant.

    I was roaming around on the internet, looking up Inflammatory Breast Cancer.  I am always curious, because there is a lot of useful information and a lot of misinformation.  I ran across an article by a doctor, entitled, “Inflammatory video about Inflammatory Breast Cancer”.  Her goal was to ease women’s minds, because the video was “exaggerated” and was causing “unwarranted” fear.  She pointed out that since IBC only affects about 3,000 women a year in the United States,  it is unlikely to be a concern for most women.

    I left her a piece of my mind!  Alas, I cannot find the thing again to cite it for you.  I think that’s a good thing.

    This doctor also pointed out that the symptoms were just like symptoms many women have that are usually nothing to worry about.  This was causing undue fear, she said.

    Lady, this is why that video on IBC is so bloody important!

    Nobody is saying that if you have a rash on your breast it is certainly IBC and you are going to die.  What women absolutely must know is that if such a thing appears and does not go away in a timely manner and as expected (for example, if a woman, or a man for that matter, has been given antibiotics for an infection) then it needs to be checked out A.S.A.P.  to rule out IBC.

    The woman I was weeping about the other night was nursing her sixth child when IBC snuck up on her.  She let it go because it was logical to have mastitis when she was nursing.  She didn’t know about IBC.  If she had, she may not have freaked out or she may have, but she would have had it looked at right away, and maybe she would be alive today.  I’m sorry I never knew her.  Reading her blog, I know I would have liked her.

    Does an “insignificant” number like 3,000 a year mean we can ignore it, because it probably wont touch us?  Given the statistics on IBC, this means that between 1,500 and 2,250 of these women will be dead, most probably within 2-5 years.  Is that “insignificant”????  Not to my children, it isn’t!

    Where did we get the idea that anybody suffering a little discomfort is a bad thing?

    World hunger makes me uncomfortable.  Shall I ignore it?  How about global warming?  How about stupid wars?

    Her2+ cancer is also less prevalent than hormone responsive cancer.  It’s a good thing that the doctor who developed herceptin thought it was important.  If he had not, I would not likely be alive today, neither would several of my friends ( most of whom I have yet to meet ).

    When fear may help you, it is a worthwhile experience.  Because children are taught to fear moving vehicles, they look both ways when they cross the street.  If women learn by whatever means to fear IBC, they will not take “no” for an answer when strange symptoms show up and don’t go away.

    Too many women today don’t fear breast cancer.  Such strides have been made that a huge percentage of women survive it.  We think we can relax on our mammograms, our breast self exams, etc.  When my mom would talk with her friends about my disease, several of them thought it was really no big deal.  I guess that was more comfortable for them.

    And when not to fear?   When it doesn’t have the potential of doing you any good.  I am so thankful to this day that when it was really critical, I was not afraid.

    Let both fear and faith be empowering.

     

    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.

    Wrong!

    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!

    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.

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    Thursday, April 12, 2007 10:35 AM, CDT

    Things are looking up! Today is better in general, because I got a really great sleep last night. Amazing how the busy little people dont encourage sleep. They don’t want to go to bed, but they’re ready to go bright and early. I slept in this morning, what a joy!

    Neulasta at 10:00, ONLY HALF, HOORAY! The neulasta is what causes the most misery to me. It’s a growth hormone, and it gives my bone marrow orders to crank out large quantities of white blood cells. The day I get the shot I feel all kinds of churning going on in there, and then my bones start to hurt. By the next day I feel as if I’m made of lead.

    This time I’m ready with everything I need to stay comfortable. I have been very resistant to taking all the medicine I am given for side effects, because I’m just not a medication person… I like to try to get things in balance first, and then try meds. I’ve had to turn that upside down and get proactive. I went through the list with Grace (Dr. Brown’s assistant) and I’ll take what I need in full, before I’m miserable.

    Maybe I’ll just sail through this one!

    It’s a beautiful day. I think I’ll play in the garden a little, after I have some on Donna’s delicious quiche for lunch. Donna, I was so motivated I ate two pieces last night! Thanks again, so much.

    Now there are some photos, courtesy of Steve mostly. I gave him my password and carte blanche to put what he likes on there. I haven’t deleted anything yet… thanks Steve!

    On to a quiet day, no need to push myself at all, just try and be comfortable and be grateful that my side effects can be managed. The less I resist it, the easier it is.

    That timely reminder came from my Uncle Dave, my father’s brother. My dad fought cancer and lost, many years ago, when he was 44. He had a vicious lymphoma that had metastasized by the time he was diagnosed. Dave has been in closer contact with me lately, in my court 100%. He’s a recoverd alcoholic with 20 years’ sobriety behind him, and quite a resource on putting one foot in front of the other.

    I told him that gratitude is what keeps me going, day after day. I asked him if this one of the things that kept him sober. He responded, yes indeed, and the other thing is acceptance. Good words. One can waste so much energy fighting what is! I am learning to conserve my energy to use to heal myself. It is frustrating to be weak and sick, but it’s what is right now. I accept it as neccessary to send my cancer away for good.

    Peace to all, and thanks. It’s going to be a decent day. A decent day during a round of chemo is a fabulous thing.

    Love, E

    Current time Postscript:

    This was in fact the easiest infusion for me, and the ones after were also easier in general although the cumulative effects of the chemotherapy got worse.  There’s a science to this!  More tomorrow….

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    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.

    Thought you’d like to see this. love, Mama P.

    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.  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 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 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”

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    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.


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