the Accidental Amazon

Against All Odds

I am not my breasts. And they are not me. They have only ever occupied a rather modest amount of my body, and I have never identified myself by their presence or absence. I am also not merely a collection of differentiated cells or a repository of biochemicals. Nor am I a recurrence risk or a survival statistic. I am not a number. Indeed, I like to think I am more than the sum of my parts. Yet, an entire segment of medicine has, for the past eighteen months or so, tried to fit me into slots defined by cells, body parts, substances and percentages.

When I was taking prerequisite courses for graduate school, there were two classes that forever changed the way I look at the world. The first was organic chemistry, and, yes, I am one of those unspeakable nerds who liked organic chem. You had to be there, though. The lecturing professor was married to a buddy of mine and was an incredibly nice guy. And the lab professor could easily be persuaded to wax rhapsodic about the really fun kinds of organic chem, like cooking, candy making and bread baking. Once I had organic chem under my belt, believe me, I never read a cookbook or a product label the same way again.

The other class was statistics, in its way even more perspective-altering than organic chemistry. The professor was one of the statisticians for the Framingham Heart Study, one of the largest and most significant longitudinal health research studies ever conducted. Launched in 1948, data are still being mined and interpreted to this day. My stats professor spoke English with an accent which lent a certain charm to the arcane vernacular of her subject. And despite that arcana, she was a bright and approachable woman who enjoyed talking about the “dark side” of statistical analysis. When I had to conduct my own research in grad school, her teaching served me well, and I learned even more about the vicissitudes of research data, which, with the right equation, can be manipulated and skewed and presented in a variety of ways, thus communicating sometimes contradictory and frequently inaccurate conclusions. Since then, I almost never take research findings at face value. A little research into the research often yields something entirely different than news headlines would indicate. But there’s nothing like sheer terror to overwhelm one’s natural skepticism. And there’s nothing like a diagnosis of cancer to suffuse your existence with sheer terror.

Just Call Me ‘Nell’

The first time I met with a radiation oncologist was a few weeks after breast surgery. He was the head of his department at a large teaching hospital, so he gave his resident the task of interviewing me and presenting my data. These were data gleaned from my post-surgery pathology report, which were then evidently churned through some formulaic machinations that ultimately spit out my prognosis and recurrence risk. The resident was a sincere, credible young man of around thirty. He was friendly and had a comforting manner about him. I was still walking around with a small ice pack stuffed in my sports bra to ease the pain and swelling of surgery, so I was susceptible to being comforted. I also still believed in oncologists then. The most inspiring lecturer I’d had in grad school was an oncologist, whose compassionate candor prompted me to regard oncology as a noble specialty, full of practitioners who would always have my best interests at heart. So silly of me. What was I thinking?

When the resident began to recommend I follow surgery with radiation, I did not dredge up my usual skepticism. I did not think, well, of course he’s recommending radiation — he’s looking for customers. As he explained my risk of recurrence, I did not challenge his assumptions. I did not ask why he claimed I’d be half as likely to have a recurrence with radiation than without. I did not insist on seeing the actual statistics he was citing or the studies that produced them. I did none of those things, because I was still getting over the shock of having just sacrificed half a boob to the scalpel, when I was told I was only donating a ‘lump.’ And his opening assertion took my breath away, which was that if I didn’t do anything else, I had a one in three chance of having the damn disease come back.

Now that I’m a jaded survivor, I’m convinced that many if not most oncologists get a kind of morbid satisfaction from frightening their patients with ominous percentages, then offering their treatment recommendations as if they’re galloping to the rescue on a white horse. But on the day I met the radiation oncologist, I was still in shock about having to meet one at all, and I didn’t know that the white horse might turn out to be a Trojan horse. I did manage to find out that there were more radiation protocols than the single option that he described to me. And I insisted, during my next visit, that I be evaluated for those other options, and was thus able to get the number of my treatments cut in half. But, I still went and let them fry me in the first place.

Something Wicked This Way Comes

It wasn’t until I was halfway through my tanning sessions that I stumbled upon the The Van Nuys Prognostic Index, an analytical tool used by pathologists and oncologists to calculate recurrence risk for patients with ductal carcinoma. If I’d found this at the beginning of the nightmare, I would have been better equipped to ask questions and gather information. The site upon which the VPNI is explained is written by Ervin B. Shaw, M.D., a gentleman and a scholar, as well as a pathologist who believes in informed consent as fervently as I do, and attempts on his site to demystify the assumptions behind the cancer treatment veil. The Elston modification of the Scarf-Bloom-Richardson system is the tool used to grade invasive ductal carcinoma, and staging is done using a tool formulated by the American Joint Commission on Cancer. Dr. Shaw, who deserves sainthood as far as I’m concerned, provides a concise, cogent summary of these and other tools of the trade on his page about Breast Diagnosis. You gotta love a guy who begins such a page with a properly validating paragraph about getting the awful news in the first place. He’s entitled it, “Shocking Stress,” and he immediately follows it with the empowering remark, “The safest course for a woman in avoiding death by breast cancer is to take charge of her life.” He then proceeds to help you do just that by providing The Knowledge. Right on, Dr. Shaw. You da bomb. You helped me figure out what the damn docs were talking about, and eventually, you helped me realize that, with genuine informed consent at the start, I could have avoided radiation altogether.

And then there’s chemo. I did manage to avoid the chemo discussion because I had no invasive cells or lymph node involvement. Chemotherapy is another whole witch’s brew — literally — with another whole set of assumptions and research data and side effects to consider. If this unsavory option comes up, not only does your tissue have to be analyzed, graded and staged, but pathologists will carefully look for a host of tumor markers beforehand. These are substances found in our body fluids which are considered at different points in the diagnosis and treatment process, to help medical oncologists determine whether or not to poison you and what kind of poison to do it with. Lovely. This link will provide a downloadable pamphlet about tumor markers for breast cancer. I would need an advanced degree in organic chemistry to discuss chemotherapy adequately, but here’s a hyperlinked PDF: Understanding Chemotherapy. At the bottom of this post is a PDF link for a downloadable breast cancer guide that does a fair job of outlining all the many-splendored delights of all forms of breast cancer treatment, including a comprehensive list of the various substances used in chemo. You know — eye of newt, horn of toad, that sort of thing. There’s even a theme song for the experience following this paragraph. Quite a catchy tune, really. Do click the play button and sing along, won’t you? I promise you’ll feel better.

The Hand You’re Dealt

After the docs finish subjecting you to the scorched-earth treatment, yet another discussion may take place about long-term, preventative hormone therapy. It would be far more accurate to dub it anti-hormone therapy. “Hormone” therapy is based on the fact that a lot of breast cancer tumors feed on estrogen. So, the theory goes, if you can limit their supply of estrogen, you can keep the little bastards from coming back or taking hold. Naturally, the next logical conclusion that any reasonable oncologist would leap to is that estrogen is BAD, BAD, BAD, and must be banished forever from your body!! Huh??? Does anyone besides me find this reasoning misogynistic? I mean, correct me if I’m wrong, but I thought the enemy was CANCER, not estrogen. I mean, hell-ooooh? Estrogen is actually kinda helpful, you know? Like, dudes, the human race kinda wouldn’t exist without it?

Contrary to popular belief, natural menopause doesn’t shut off all our estrogen forever. There’s a lot less of it floating around, but it’s not gone entirely. There’s still enough hanging about to help keep our bones from turning into dust, for instance, although they may get thinner. If they get too thin, you develop osteoporosis, which can be a crippling, debilitating, and, yes, even deadly disease. I happen to know that, because my mother died of complications related to osteoporosis. Her spine was so deformed by it, her heart, lungs and stomach couldn’t function properly anymore. It stands to reason, then, that if you take a drug that shuts off all the estrogen in your body, you might start losing bone mass and skin collagen and joint resiliency and protection against arterial plaque and, oh yeah — your sanity. And yet, the latest Koolaid in the breast cancer arsenal is a class of drugs called aromatase inhibitors, which do just that by blocking the body’s ability to manufacture estrogen. But the medical oncologists push AI’s like they were M & M’s. Personally, I think the dark chocolate M & M’s would be a lot more therapeutic.

I was post-menopausal and osteopenic by the time I was diagnosed with the Stalker, so aromatase inhibitors weren’t such a good idea for me. Instead, my medical oncologist recommended tamoxifen, which is a selective estrogen receptor modulator (SERM). SERM’s don’t turn off the estrogen faucet, but redirect the flow. Tamoxifen, in particular, would keep estrogen away from my ta-ta’s, while letting it float over to my osteopenic bones. Or so I was told. It would even help lower my cholesterol. And most importantly, it would cut my remaining 15% recurrence risk in half. The only problem was, I couldn’t take my usual anti-depressant with it, because the two substances didn’t play nicely together in the liver. There weren’t too many of them that did play nicely with tamoxifen, it seemed, and I was most definitely NOT going to continue this sleigh ride without one, so I was allowed to try Effexor. Thus armed, I started tamoxifen and Effexor a month after radiation.

Followers of this blog know what happened after that. Between the side effects of radiation, and the stress, and the surgery, and the new drugs, and the lack of useful follow-up help, and the cancer-related fatigue, and the decrease in concentration and memory, and the fact that I was led to believe I’d be all right to go back to work as soon as I did, and that I’d be right as rain in a few months, which I was not, 2009 unfolded as one long, drawn-out descent into side-effect hell. After months of this torture, one of the things I did was to revisit Dr. Shaw’s website and recalculate my own prognosis and recurrence risk from my post-surgery pathology report. I also took a long, hard look at the statistical numbers — all the numbers — upon which many underlying treatment assumptions are based, and I put them back into the context from whence they were plucked. And guess what? Even if I believed the studies and used their stats, hormone therapy wasn’t really buying me much. Tamoxifen was only reducing my so-called recurrence risk by 7.5%. Meanwhile, I felt like I’d aged about ten years in ten months. My skin and hair and eyes were as dry as the Sahara, my joints ached, my brain would run out of gas at extremely inconvenient times, and I absolutely hated Effexor, which gave me stomach-aches and head-aches and made me dizzy. Five years of this I was supposed to endure? For a crummy 7.5% decrease? I don’t think so. Besides which, the chances of my not having a recurrence were way in the double digits, and I was going to be getting mamm’d and squished and poked and checked quite diligently for the foreseeable future. Even if the Stalker returned, odds were we’d catch it early. So, after eleven months, I quit taking tamoxifen. And I felt better. And my med onc agreed with my rationale. So there.

Just today, a new research study came out that was, as usual, misrepresented by blaring, misleading headlines: SSRI’s and Tamoxifen Increase Mortality. Mind you, this was actually posted like that on the Facebook page of a well-known breast cancer information site. Well, you read that, and you think, okay, I can be not depressed and croak, or be totally bummed out and live longer. Great! Except that’s not the real story. The real story is actually good news, which is that the study looked at long-term use of a variety of anti-depressants taken with tamoxifen, and found that only one of them, Paxil, was actually associated with any adverse affect on the benefit of long-term tamoxifen use in reducing the risk of breast cancer recurrence. The other anti-depressants, that did not appear to cause any decreased benefit, included Zoloft, Prozac, Luvox, Celexa and Effexor. It may be discouraging to read in the study that “up to 25% of patients with breast cancer experience a depressive disorder,” but frankly, I think it’s quite appropriate to find having breast cancer depressing. In fact, I think 25% is a modest estimate. But the good news is that even if you are taking tamoxifen, which is probably making you feel more depressed, you can safely choose from a variety of drugs to help you feel less depressed. Or, you could just chuck hormone therapy altogether.

I must admit that what’s possibly more depressing than having breast cancer is the way the doctors frighten us with that nasty, blinkered, glass-half-empty attitude. What’s so great about maybe shaving 7.5% off my risk of having breast cancer again in the foggy future? Not worth destroying my quality of life in the present. I think it’s much healthier to focus on the 85% chance that I WON’T be dealing with a return of the miserable, stinking disease ever again.

Cancer.net’s Guide to Breast Cancer
Breast Cancer Recurrence Risk Analysis

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“Caution: Slippery When Wet”

My heart goes out to the beleaguered citizens of Haiti. If I could, I would wave my magic wand and banish all natural disasters. They are one of the enormous levelers in this world. In an instant, no matter how cushy or hellacious your current life is, a hurricane or an earthquake reduces your life and the lives of everyone around you to the pursuit of basic survival. And even the long, slow crawl back to so-called normal life depends on so many variables that are out of your control. Ask someone from New Orleans how long it takes to get your life back after your entire world is turned upside down. The answer? You don’t get your old life back. You only get to save what you can from the wreckage and rebuild the rest.

The phrase ‘natural disaster’ is an ambiguous one. The word ‘natural’ presumably means ‘not man-made’ in this case, or, according to Merriam-Webster, “being in accordance with or determined by nature [...], occurring in conformity with the ordinary course of nature : not marvelous or supernatural.” By that definition, you could describe life-threatening diseases as natural disasters, I suppose, however much you might suspect the causative influence of human-generated environmental damage. But in another sense, ‘natural disaster’ is an oxymoron. Because there’s nothing natural — meaning ordinary — about such disasters, be they tsunamis or cancer.

Whatever you call it, recovering from cancer usually involves rebuilding on many levels. Your life will never be the same, and neither will your body or self-image. It’s like having an über identity crisis. The recovery process can be complex, lengthy, and overwhelming. It’s never a surprise to me when someone feels like she just can’t cope anymore. What really amazes me is that most of us manage to endure. As my friend Linda D. used to say about life’s disasters, natural or otherwise, the reality of surviving cancer is that “life sucks, and then you live.”

And you know what? I don’t feel like dealing with another identity crisis. Really. I don’t even feel like having a good identity crisis, like the kind you have when you graduate from high school. Sure, it was positively thrilling to do all that soul-searching when I was around nineteen, when angst was my hormonal right. But I’m not nineteen or even forty anymore, and I’m no longer amused by melodrama. Besides which, I just HATE having to do anything over again. Including myself. I mean, been there, done that, did the therapy, ya know?

My friend, Sira, who grew up to be an archeologist.

The Big Dig

Then there are the folks who say that cancer made them better people. On my good days, I usually chalk up such assertions to poor grammar. They couldn’t possibly mean to give a disease all the credit, could they? On my bad days, I think they’ve swallowed the Pollyanna Koolaid, which you know I hate. Otherwise, if I take such a statement at face value, then I just don’t get it. I don’t even want to get it. I mean, good golly, what kind of a jerk do you have to be in the first place if it takes something as wretched as having cancer to make you a better person? What, you couldn’t do better on your own? Who the heck were you before? Bernie Madoff? Hitler, for god’s sake?

In case you might be wondering, I can categorically state that cancer has not made me a better person. Frankly, I think I was already a pretty darn good person before I had cancer, thank you very much. I already had a lot of character, in my humble opinion, and I really didn’t need to build any more. Now, in cancer’s aftermath, I am a much more tired, much less energetic person than I’ve ever been. Ever, ever. I think of what I was doing right before diagnosis, and I can’t get over how much sheer chutzpah I had. Now, I cuss a lot more. I forget things all the time, even in mid-sentence. It takes me about twenty times as long to do anything more complicated than to get out of bed in the morning. And some days, getting out of bed is complicated. I have less stamina and weaker muscles. I’ve gained weight. My skin looks like a topographical map unless I’ve just slathered it with moisturizer. My back hurts, my knees hurt, my shoulders are killing me, especially the right one, and I’m missing half a boob. I never did suffer fools gladly, but now I think there are way more of them out there than I ever previously suspected. And not only do I not suffer them gladly anymore, I actively avoid them when I can, tell them to bug off when I can’t, and, in particularly intransigent cases, rake them over the coals in this blog. Anonymously perhaps. But with gusto.

Yes, I will admit that I’ve learned a lot. I’ve learned more of the ugly side of our health care system than I ever knew or even suspected. And I think because I work in it, my cynicism and disillusionment have thus increased exponentially. My skepticism certainly has. I don’t trust people as easily as I used to, especially the sort of folks who are supposed to take care of people like me when they are diagnosed with cancer. My having cancer did not make any of them better people, I assure you. And it’s made me more of a grouch than I’ve ever been in my life.

On the flipside, I do, somewhat grudgingly perhaps, accept more easily my own limitations, as well as those of the people I care about. And I am much more grateful when someone steps up to the plate and does what she does competently or generously, with good grace and decency. I always endeavored to be compassionate and empathic, which is one of the reasons why I work in health care. And those traits have been deepened now. I do indeed have a lot more to take to the table when I am treating my patients, who have usually just come home from the hospital after enduring their own tsunamis.

It’s taken me over a year even to catch on to what-all has happened to me and is still happening, and to find the right kinds of help for it. Only recently have I figured out how merely to enable myself to rebuild my life, much of which has been on complete hold all this time. Finally, this week, I have felt well enough to make a start. And so, tentatively, guardedly, I am sifting through the wreckage, figuring out what to toss and what I can salvage with a little spit and polish. Yes, fellow travelers, I think the Accidental Amazon might really and truly be starting to feel — drum roll, please — Better! Don’t get too excited. That doesn’t mean I’m all set now. It only means that at last I may have the wherewithal to begin the Big Dig. At the moment, I’m more of an archeologist. Later, I’ll get to be an architect again.

And after that, who knows? I don’t know what my reconstructed life will look like, but I do know that I will enjoy and appreciate living it very, very much.

The courtyard of my favorite museum, the Isabella Stuart Gardner, in Boston.

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Tempting the Fates?

I might tick off a few people with this post, but so be it. I cannot control what or how anyone else thinks. Indeed, I can’t even control my own destiny. I might be able to exert an effect on it now and then, and I certainly don’t lay around passively awaiting its designs. But control it? I think not. I’m not that powerful, and neither is anyone else.

The ladies in this tapestry are the Fates, three sisters who, the ancient Greeks believed, control our human destinies. Clotho, the spinner, holds the spindle from which she draws the thread of life. Lachesis holds the rod that measures the length of a life. And Atropos holds the shears with which she snips the thread, thereby ending a life. I don’t know the identity of the woman laying at the feet of the sisters. In fact, I can’t quite tell whether the Fates are stepping over her or upon her. But in any case, I Photoshopped my face on her, because it has certainly felt during much of the last year or two that I was at the mercy of something or someone that was kicking me around.

I have been pondering the philosophical and etymological nature of this post for weeks now, maybe even months, so let me just say something right up front. I did not ’cause’ myself to have breast cancer. The best scientific and medical minds of this century don’t know what causes it. I was one of those people who should conceivably never have had breast cancer. I was healthy, slender, fit, and had no family history of breast cancer and no genetic markers for anything. So I think I have every right to say that I had nothing whatsoever to do with my developing breast cancer. It was a bolt out of the blue, or a decision by the triad above if you like, but it sure wasn’t my fault. And if I hadn’t made my peace long ago with the notion that we are mere specks in the universe, and that, despite our best efforts, we can’t really control a lot of the stuff that happens in our lives, I would have gone completely around the bend when I was diagnosed. But I did not. That’s where my profession as a health care clinician helped me a lot, because I’ve seen every kind of rotten luck befall all kinds of people. And trust me, most of the time it wasn’t their fault either. Illness happens.

But, oh, we humans don’t like to admit how powerless we really are. And don’t get me wrong: I’m no fatalist. No matter how huge the cosmos is, and how teensy we are in comparison, I still think we have a moral and spiritual responsibility to be good to others and ourselves, and to try to leave our little corner of the place a little better than when we arrived. But when you are diagnosed with cancer, all manner of human hubris, superstition, advice, fear and plain ol’ errant nonsense comes your way, along with the things that actually help, like validation, compassion, factual information and support. Just now, as I made myself a snack before sitting down to write this, I peeled the lid back on a tub of yogurt and found an offer for a free copy of a book that describes how we can prevent cancer by eating organic foods. Lordy. Sometimes you just wish everybody would leave you the hell alone.

People Are Not Batteries

One of the most prevalent notions that pops up when you are dealing with cancer is the idea that somehow it’s not only helpful, but crucial to your survival that you “stay positive.” Now, in the first place, the news that I had cancer was delivered to me by a doctor who said these words, “Your biopsy was positive.” So, right there, the word ‘positive’ instantly became at best an ambiguous concept for me, if not an out-and-out dreaded one. In fact, when I looked it up as I was researching this post, I discovered that the word has, according to Merriam-Webster Online, at least eight official meanings when used as an adjective, and a few more when used as a noun. The last definition on this list is “having a good effect : favorable [...] marked by optimism.” This is the one from which the various pundits and Pollyanna’s are speaking when they tell you to stay that way when you have cancer. It doesn’t matter if you’re realistic, as long as you’re positive about it. Yeah, thanks. Meanwhile, now and forever when I wait for pathology and diagnostic imaging reports, my mantra is always some version of “I hope it’s negative.” Not surprisingly, the word ‘negative’ also has several meanings, including such things as “denial, disagreeable and marked by features of hostility.” But if that initial pathology report on my biopsy had been negative, meaning “having a test result indicating the absence, especially of a condition,” it would have meant that I didn’t have cancer, and I wouldn’t have had to endure this whole sleigh ride. There are value judgments attached to all of the meanings of these two words, including the ones that are merely mathematical or electrical or scientific. Assigning a value to a result may be useful in medicine or quantum physics, but it can be harmful at worst, or inept at best to assign a value to the emotions and outlook of a cancer patient.

Delusions of Grandeur

There’s no question that being diagnosed with cancer is generally regarded as a pretty dramatic event in one’s life. So I don’t think there’s anything wrong with being in a lousy mood about it once in a while. Indeed, I would venture to conclude that anyone who was happy to be diagnosed with cancer might need a rubber room and an IV of thorazine. But that’s just me. Call me grumpy — and I’ve been called worse — but I don’t, won’t and vigorously object to anyone who tells me I ought to regard cancer as a blessing. Double rainbows are a blessing. Steadfast friends are a blessing. Cancer, ladies and gentlemen, is a disease, and a life-threatening one at that. But the friends I’ve met and made since having cancer, and the lessons I’ve learned as I faced the challenges of treatment, and the fact that I’m still walking and talking and able to help others, those things are blessings. A lot of good things have happened to me in the past eighteen months, but cancer was not one of them. It may have been a kind of conduit through which some of these good things arose, but had I not had cancer, there would have been other conduits, other challenges, other blessings. That’s the way this fate thing works. Shit happens, but mostly you get to choose how to respond to it. It’s never as simple as merely being positive or negative, whatever that actually means. And there’s something dangerous about thinking that our moods and thoughts are so powerful that they can affect events that we don’t even apprehend. The very idea makes me think of a two-year-old who wants her own way and thinks that she’ll get it by lying on the floor, screwing up her face, and kicking and screaming until her parents give in just to shut her up. It might work for the moment, but if her parents don’t learn to say no and mean it, she’s going to grow up without feeling that safety net known as boundaries and without learning what her real strengths and limitations are. In fact, it’s likely she’ll grow up to be fearful of all the things she can’t control, and disillusioned when she finds out that she can’t change most of them by being a good girl or a bad girl. Being a sensible girl is the only strategy that might help her navigate the shoals she’s bound to encounter.

“I never think delusion is okay.”

I’m not the only one to take issue with this notion that your attitude can change the world or at least your little piece of it. One of our Sistahs and a fellow skeptic, author Barbara Ehrenreich, talks about how damaging the myth of positivity is and how it can lead to the kind of greed, entitlement and denial that brought us our present economic crisis. In her new book, Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America, she discusses the ramifications of positive thinking, including how “[o]n a personal level, it leads to self-blame and a morbid preoccupation with stamping out ‘negative’ thoughts.” The quote above this paragraph is from a recent interview with Jon Stewart on The Daily Show, during which she discussed her own battle with breast cancer and how others invalidated her experience by insisting that she be positive.

Here’s the thing. In my travels as a home care physical therapist, I have found that ordinary people are quietly heroic about facing the challenges of illness and disability every day of the week, and it’s not delusion and denial that help them do it. It’s the willingness to face up to their challenges squarely and honestly, with good humor, persistence and acceptance. And occasional cussing. So here’s what I say to those who push what I call the “pink Koolaid:” keep your adjectives to yourself, thanks. When I want someone to pass judgment on my attitude, I’ll let you know.

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One good way to make someone crazy is to continually invalidate their experience. There are many ways to accomplish this, all of them mild to moderate variations on “gaslighting” someone, or “ruthlessly manipulating an individual, for nefarious reasons, into believing something other than the truth.” I’ve been on the receiving end of several versions, more than I’d care to number, but lately, I’ve been gaslighting myself a little. You almost can’t help it. When you keep turning to the health care system for help over and over and over again, and you keep not getting it, or getting help that doesn’t help, or falls short of helping, and your friends don’t know what to say to you anymore, or they get tired of listening to you, and you’re just so sick and tired of feeling sick and tired that you can’t stand your own company anymore, well, that can make a person feel a little nuts.

I wanted to write something pithy and incisive about this topic, but I’m too worn out at the moment. What else is new. There’s nothing quite like a life-threatening illness to to use up all your reserves. Especially when most of the people who are supposed to help you, who get paid to help you, don’t.

Being diagnosed with cancer and then being treated for it is a sure-fire way to complicate your life.
All too often, after active treatment is over, cancer patients are turned loose and expected to “move on” from being patients to survivors without any guidance about how to do so. It stands to reason perhaps, that after navigating the labyrinth of cancer treatment, an effective strategy for long-term recovery might center on simplifying your life. I certainly wish that had occurred to me, but I took something of the opposite tack, which was to pretend I was invincible and that breast cancer was just a bump in the road, and survivorship merely required me to step back into my old life.

Instead, it was more like navigating a border crossing into a foreign land, where jack-booted, scary-looking dudes with machine guns stopped me several times to check my passport, run me through a full-body scanner, interrogate me for an hour, and then direct me to a road that was not the smooth, straight thoroughfare of my former life, but a maze of crooked, poorly lit, pothole-ridden tracks through the woods, with very few roadsigns and hardly any paving. Or gas stations. Or maps. Or GPS.

I wasn’t completely without a map. In fact, I had lots of friends and resources at my disposal, plus a lot of experience surviving crises. But what I didn’t have was fair warning and realistic expectations. And I didn’t have a physician or other clinician that would serve as my go-to person when problems arose and I lost my way. Except for my primary care doc, the physicians involved in the active treatment of my cancer were, as one of my nurse friends would put it, “as useless as tits on a bull.” Sorry, all of you, but really, you just weren’t there when I really needed you, which was long after you slashed, burned and poisoned me.

Thus unprepared, what I did was scoot back to my demanding full-time job and attempt to resume my complicated full-time life within days of finishing active breast cancer treatment. And it’s taken me an entire year to realize how stupid a notion that was. But finally, I have acknowledged the error of my ways, no thanks to my original triumvirate of physicians, and I’m doing what I probably should have done in the first place. I’ve cut back my full-time work hours to 3 days a week, I’ve been seeing a physical therapist for the pain and cording in my right armpit, I’ve got some decent drugs, and I’m beginning to do some regular gentle exercise. I also quit taking tamoxifen, which was making me feel like I was lost in a fog. I did this with the after-the-fact agreement, by the way, of the second medical oncologist I went to, after having given up on the first one. She actually used the words “quality of life” — the first time I’d heard them uttered to me by anyone I’d encountered in the cancer-treatment world — and acknowledged that it wasn’t worth taking a drug that only promised a single-digit decrease in my recurrence risk when it affected me so adversely. I am working on a post about this (“Better Living Through Chemistry”), which will appear soon.

Why did this happen, though? Why is the health care system and its clinicians so badly prepared to help people with cancer make cogent choices and navigate long-term survival? I hate to relate this, but more than once has a survivor friend told me some version of the following: she goes to her rad onc or med onc feeling poorly, asks for help, doesn’t get it, asks if she can get help elsewhere, and is told, “What do you want? We did save your life.” Uh, thanks, pal, but isn’t that your damn job? I mean, whadduya want? A medal?

It’s not difficult to start thinking that no one in oncology gives a rodent’s derriere about this problem or even recognizes that there is a problem. But, take heart. There may be a ray of hope. In 2006, the Institute of Medicine (IOM) of the National Academies published the findings of a committee they had formed “to examine the range of medical and psychosocial issues faced by cancer survivors and to make recommendations to improve their health care and quality of life.” Fifteen years ago, in 1985, Fitzhugh Mullan, a physician and cancer survivor, identified the need for accomplishing such a task when he said, “The challenge in overcoming cancer is not only to find therapies
that will prevent or arrest the disease quickly, but also to map the middle ground of survivorship and minimize its medical and social hazards[.]” The IOM published the committee findings in a book, From Cancer Patient to Cancer Survivor: Lost in Transition, and in its companion book, Implementing Cancer Survivorship Care Planning, which you can read online at the link on the left. The two books not only include recommendations, but outline the means by which physicians and hospitals and cancer centers can carry out these recommendations and help the now ten million cancer survivors in the U.S. not merely survive their cancer, but live long, strong, and well.

Nothing is ever simple in health care, though, and trying to get the word out on this is like trying to steer the Queen Mary in a pond. Even the term “survivorship” is interpreted in several different ways. Quality of life is another concept that defies a standard definition. And the long-term and late effects of cancer treatment, which in one way or another impact the rest of our lives, are still inadequately researched and recognized. Aziz and Rowland (2003) defined them as follows:

• Defining Late- and Long-Term Effects of Cancer Treatment
• Late effects refer specifically to unrecognized toxicities that are absent or subclinical at the end of therapy and become manifest later with the unmasking of hitherto unseen injury because of any of the following factors: developmental processes, the failure of compensatory mechanisms with the passage of time, or organ senescence.
• Long-term effects refer to any side effects or complications of treatment for which a cancer patient must compensate; also know as persistent effects, they begin during treatment and continue beyond the end of treatment. Late effects, in contrast, appear months to years after the completion of treatment.

I can tell you from personal experience that physicians can be somewhat reluctant to identify these effects and pin their appearance conclusively on cancer treatment. This reluctance can prevent us from getting appropriate treatment and support, not to mention exacerbate the material and financial consequences for all of us who are forced to work part-time or not at all after treatment, while we struggle to get social service agencies and health care providers even to recognize that our problems evolve from it in the first place. “We’re all guinea pigs,” one of my friends has said in disgust. And to a large degree, that is true. But we’re guinea pigs who can talk and complain and insist and testify. We may not always be up to the task, but we can try.

Yes, heaven knows we all want a cure. But in the meantime, we who have survived thus far have to keep living. And we deserve to keep living with the compassion and knowledgeable support of the folks who got us to this point in the first place. I was never even provided with a patient survey after my treatment to provide some feedback. So, one of the first things I’m going to do this year is to sit down and write to my surgeon, my oncologists, and a few cancer care administrators, and give them some. My letters might go right into the shredder, but chances are that they won’t. I know something about how that works in health care. In the hospital system that employs me, letters from patients are taken very seriously.

So, that’s my short-term plan to strike a blow for survivorship and maybe help improve things somewhere down the line. It’s a start anyway. I might tick a few people off, but so what? I’m pretty tough. After all, I did survive cancer.

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Updated January 20, 2010; links to research articles added.

I’ve just been giving myself a crash course in how to read CT scans. Not for the faint of heart, trust me on that, although you get to say mysterious things on your reports, like “there is some minimal linear subpleural opacity…which may be related to…radiation related changes.” Yee gods, as my mother used to say. Guess they don’t do English grammar in med school.

Thus, Grasshopper, do I direct you to the above image, which I have embellished for purposes of clarification. It is a transverse image, which means it’s like a horizontal slice of my thorax, from my CT scan last Friday. The pink ellipse indicates the putative “minimal linear subpleural opacity,” which, in English, means those little white grainy things there, that look like gravel along the outside edge of the lungs, which are those black bean-shaped things. That white outline around the lungs, by the by, is the pleural sac. The faint, squiggly lines in the lungs are, I think, the branches of the lower bronchial system that go into the alveoli. This image is at a level that’s just above the nipples, so it’s about at the level of my radiation tattoos. The purple dots are where the tattoos are, and the green line between them represents the inner margin of the external beam radiation with which they zapped my breast.

So, the good news is, I don’t have any scar tissue actually in my lungs. The bad news is that my asthma is worse than it has ever been in my life. But the good news is that I have normal lung capacity, according to the pulmonary function test I took this morning. But the bad news is that there is scar tissue along the front of the pleural sac around my right lung. I dunno, you do the math. Does this mean that I break even? The pulmonologist called and said that the asthma has likely worsened and continues to pester me because of some infectious or inflammatory process, although she wouldn’t come right out and pin it on radiation. They must have a class in med school called, “Hedging Your Bets 101.”

Well, here’s the thing. Before I had radiation to my right breast, I hadn’t had a cold in years. I’d had bronchitis maybe fifteen years ago. I hadn’t had any asthma reactions to anything in three or four years, and maybe I’d had only one or two teeny attacks that lasted all of ten minutes each. On the other hand, within two weeks of starting radiation, I came down with a raging, rip-roaring sinus infection requiring antibiotics. Three months after radiation, I had another sinus infection, also requiring antibiotics. Ten months after radiation, I started having what I have since been told was a protracted period of asthma, with increasingly worsening shortness of breath and a constant dry cough. This lasted from August through the end of December, and included another sinus infection requiring antibiotics, plus treatment with prednisone, plus a steroidal inhaler, before it subsided enough so that I could take a deep breath without coughing up a lung. It’s still with me, but now when I cough, my lung stays where it belongs.

So…I think we have one of those duck situations here. To wit, both the pulmonologist and the radiologist were willing to admit that radiation might have and even probably did have something to do with the pleural scarring, but wouldn’t commit themselves to blaming it for my breathing problems. However, as I have said before, if it looks like a duck, and it quacks like a duck, and it coughs like a duck, then it’s a damn duck.

Ya ain’t gonna snow me with all yer fancy lingo.

And here’s some research to back me up; these are downloadable PDF’s.

1. Radiologic Findings of Pulmonary Changes After Breast Cancer Radiation
2. Clinical Relevance of Pulmonary Late Effects After Breast Cancer Radiation

The title is a quote from the song, “The Air That I Breathe,” by the Hollies.

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Did you ever find yourself doing something innocuous that unexpectedly unhinges you? You’re cleaning out a closet, say, and you come upon the umbrella your mother bought that weekend when you took her to the Big Apple for her birthday to see a play, and you got caught in a sudden rain shower. And you remember your laughing protest when she insisted you keep the umbrella, even though it was her birthday, because she wanted you to have a souvenir of this lovely weekend you’d given her. So, years later, here you are, cleaning out the closet. And you find the umbrella in the corner you’re sorting out. And the next thing you know, you feel like someone has stabbed your heart with a very long, sharp sword, and you are on your knees, weeping, remembering how you had to use that umbrella at the cemetery the day you buried her.

It’s one thing when you’re by yourself when this happens. It’s another when a total stranger happens to be involved. Back in 2003, my friend and fellow physical therapist at work lost her only son in the infamous Station Nightclub fire that happened here in Rhode Island. Her son was 22, he was planning to go to law school, and the night of the fire had been his one and only visit to that nightclub. My colleague had not come into work the day after the fire, but I didn’t know why until someone told me she was at home, waiting to find out if they were able to identify her son’s body. I felt like someone had crushed my heart. We all felt like that. All day long. Waiting for the confirmation of his death that didn’t come officially until the next day.

Perhaps a week or two later, her son’s funeral, one of the hundred that took place that winter, was finally planned and scheduled. I was on the phone at work, talking to a local florist to order some flowers to be sent from all of us at the clinic. I’d decided on a price and an arrangement style, and the florist was asking me where I wanted it sent. I started to tell her and instead broke into tears, literally choking up. It wasn’t that difficult for her to figure out who I was talking about, however. “We’ve had a lot of calls for him,” she said gently, which made me cry even more. And I realized that she must have to deal with this all day long. I got a bit of a grip on myself and said something to acknowledge that, and she agreed it was a tough part of the job. We thanked each other cordially and hung up, just in time for me to collapse into more sobs. I had already cried my heart out and dried my eyes with my colleagues over the previous several days. But somehow, having to say his name, having to admit that this bright, handsome young man was going to be buried in a few days, made me feel like I’d just heard the news all over again. And it hurt more somehow because a perfect stranger was kind to me.

I had another of those experiences this morning. No one died this time, thank goodness. I was calling the claims department for my cancer insurance to ask a few general questions. Yes, I have cancer insurance. More on that in a minute. It’s taken me an entire eighteen months just to get myself and my paperwork together enough merely to start the formal process for this claim. Every single step of this entire task has been extraordinarily painful, from downloading the claim forms, to finding out what the insurance company needed to process the claim, to calling all the hospitals and cancer treatment places and medical offices I’ve been to during this blasted sleigh ride to request itemized statements. It’s not like I’m working toward some horrible end result. Far from it, in fact. Cancer insurance in a kind of supplemental insurance that helps cover the costs of this miserable experience that don’t get covered by regular health insurance. It helps pay for things like traveling far from home for treatment, and even for taking someone with you. It more than covers all the co-pays you incur. It’s also helps you pay for babysitters or taxi rides or other things you never anticipated you’d need. It’s a wonderful, inexpensive and miraculous thing, the miracle being that it exists at all and that I had the remarkable luck and rather uncharacteristic prudence to purchase it.

Finally, last week, right before the end of 2009, I girded my loins, copied all the medical statements and pathology reports and receipts I had so far organized, filled out the form, typed up a list of enclosures, and stuffed it all into a large envelope. It took me another whole day to get to the post office and mail it, but at last, on December 30th, 2009, eighteen months and ten days after that routine screening mammogram found something “suspicious,” I mailed off the pile of paper documenting most of my battle with the Stalker to date. When I got home, I had to lie down and stare at the ceiling for a while, tears sliding down my cheeks and into my ears. When you buy something like cancer insurance, that primitive, superstitious part of you wants to believe that you are making a bargain with fate: If I buy this, then I’ll never need it. And here I was. Needing it. I think I ate dinner that night, but I’m not sure. I know I ended up back in bed, very early, curled up in a fetal position with the covers tucked tight under my chin, trying to sleep myself away from reliving everything, while pathology reports drifted stubbornly behind my eyelids.

Okay. Deep, cleansing breaths. Back to the burning question. Yes, Virginia, there is such a thing as cancer insurance. I found out about it about four or five years ago at the annual benefits fair at work, where we get to review our regular benefits and sign up for optional benefits. There was an agent booking brief, individual appointments to explain what it was and sign people up. He was unusually busy all day long for a very good reason. A few years previously, one of our rehab therapists, a healthy, young woman of 30, was diagnosed with colon cancer. She endured the whole nine yards of treatment, plus the painful slog through long-term side effects, fatigue, and neuropathy. And I’m happy to say she is alive and well today. But naturally, it scared the ever-loving bejesus out of all of us. So, a good many of us, who might not otherwise have done so, signed up for cancer insurance that day.

Our policy provides incentive coverage for cancer prevention, through annual cancer screening tests like pap smears and mammograms, as well as reimbursement coverage for actual cancer treatment and its related expenses. You can find out more about it here at this link: Colonial Life Cancer and Critical Illness Insurance. It only costs each of us $300/year, which we pay ourselves, and if you get one standard cancer screening test each year, they’ll give you back $100.

This morning, I called to make sure they had received all my stuff and to ask a few general questions. Whoever is in charge of this department at Colonial Life has done a commendable job of training the staff. Every time I have spoken to someone in the cancer claims department, they have been invariably kind, patient, helpful and informative. There are a few so-called comprehensive cancer treatment centers I could name who could take lessons. This morning was no exception. Yes, they had received everything and had just this morning set up the formal claim. Yes, they had scheduled a call back to me on the claim status three weeks from today. Yes, even though reimbursement for lost wages wasn’t included in my policy, I should definitely fill out the lost wages section of the general claim form and have my doctor sign it, because I was entitled to have the premium waived for the time I have been dealing with all this. And yes, the policy would certainly continue to help me out with expenses related to the diagnosis and treatment of all the long-term side effects I have experienced since I finished acute treatment. And was there anything else they could do for me today? No, I said, you’ve been very helpful. Thank you very much, I said, and I’d barely hung up the phone before I began to weep for about the umpteenth time.

If I’ve done the math correctly, I will get enough payout from this whole claim to enable me to cut back more of my work hours without worrying about how I was going to pay all my bills with a reduced paycheck. This is a good thing, because I just don’t know what the hell else to do at this point, short of winning the lottery so I could stop work altogether. Somehow, all I’ve managed to do this past year or so is to tread water. But I never seem to make it to shore. Somehow, I need to tip the balance, to enable myself to fight back against the reappearance of my cancer-related fatigue and the recurrence of my axillary web syndrome and the new appearance of my pulmonary fibrosis. I have come to be afraid of hope, because I had hoped by the end of 2009 that I would feel normal again. But somehow, I need to risk hoping so that I can keep fighting to get back to myself. And win. Eventually. And it is comforting to know that the cancer insurance will keep helping me.

I would say I was lucky I bought this insurance, but I’ve come to resent the very word. I’ve been told way too many times that I’m ‘lucky’ I had early cancer. Yeah, right. Feel free to insert your favorite expletives here. Luck, as my Sistahs all know, would have been never having had the damn disease at all. Luck would have been winning that bet I made with fate five years ago, by buying cancer insurance and never needing it.

“It’s déjà vu all over again,” originally spoken by Yogi Berra, in reference to back-to-back home runs hit by Mickey Mantle & Roger Marris in the early 1960’s.

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