Thursday, September 4, 2008

"And then God gave her cancer..."

“We must realize and be ever conscious of the fact that life is fugacious and ephemeral.” ~ Bobson Gbinije

There were plenty of distractions to keep me from worrying and wondering about summer’s crop of uncertainties-- the sudden unnerving disruption to my menstrual cycle, the ceaseless hot flashes, the chronic anxiety about how best to live my life, make the right changes and choices, take care of my girls, my boys, myself. There was my determination to get back more fully on my feet, to raise the bar bit by bit, with swimming, bicycling, tennis, hiking, PT exercises and yoga all keeping me busy. There was the age-range spectacle of the thirteen year old Chinese gymnasts and 41-year old Dara Torres at the Beijing Olympics, with its promise that perhaps, at my near middle-age, there still might be some potential left in this old bod of mine. There was the usual caravanning to camps, to the golf course, the gym, the tennis courts, play dates, and back again, the rollercoaster ride at the gas pump, and the exponential rise in food prices that sent us scurrying to our local farmer’s markets. There was the insipid drumbeat of gardening chores (weeding, and lots of urgent berry-picking, but mostly just loathsome weeding), and infestations that simply did not quit. There were the do-nothing days spent lazing about by the Northfield pool to store up on the sunshine vitamin, visiting with friends in the spontaneous neighborhood, and letting the kids govern themselves for awhile; staying in bed to read long after the sun had come up; watching movies on all those rainy, thundery afternoons. And there was, of course, the home school end of year assessment to write up, and a new plan to write for the coming school year, research to be done, lesson plans written, ideas brainstormed, new books ordered. Best of all, there were plenty visits with friends and family, whose presence made the summertime spin like a giant kaleidoscope of intermingling colors and faces.

I spent a week in Williamstown at my mother’s with Dominick, who was attending a basketball camp at Williams, and my two nieces, who stayed with Grammie Poke for about ten days before my sister arrived. It was great fun watching the cousins get reacquainted, making mud pies, learning how to swim with the currents by letting the jetties take them to safety (ah, such wisdom in that—don’t fight the current, just trust that it will take you where you need to go), and playing Warrior cats.

While in Williamstown, I had the chance to spend time with my friend Maribeth, who was herself was just one week into her recovery from a right-sided mastectomy. We spent the morning sitting in her lovely backyard, trading stories, showing each other our scars and girls-in-progress, our purple hearts. She looked amazing—strong, healthy, and curiously and cautiously starting to go about making some changes in her life. There are always so many common threads in our lives as women, as mothers, as breast cancer patients and survivors, and it felt so good to be a part of that process, of weaving together ourselves into a kind of tapestry of sisterhood. Later, she would tell me a wonderful story about how she had been to Sloan Kettering for her post-op check with her plastic surgeon, and had spent her time in the waiting room surrounded by other women—all at different stages of treatment, recovery, and reconstruction—who engaged in an impromptu, festive exchange of warmth, wisdom, stories, inspiration, and even scars—when several, including Maribeth, went to the bathroom to show each other what and where they were in the process, baring and comparing battle wounds, survivors, all.

Luke spent the same week at a residential basketball camp at Wheaton College, where he and his roommate got locked out of their room the first night and spent a cold night in the lounge, watching bad TV. We gathered with some Reed and Damon cousins at our house in late July; my sister and her family were visiting from New Mexico, and it seemed a great time to bring some folks together. And it was wonderful to see everyone, enjoy a delicious picnic under the cover of umbrellas and much laughter in the pouring rain, and watch the sun stumble out, finally, like a slightly besotted guest arriving a bit late to a party. Luke’s homemade ribs were a big hit, and was great to watch his cooking skills take off this summer. And just a week or so later, we gathered with even more cousins in North Conway, NH and Fryeburg, Maine, where we had the usual uproarious feasts, rode the Bamboo Chutes over and over again at Story Land, climbed Kearsarge, played at the overflowing lake, and sang Rooster Pooster a few times, just so the youngest generation would remember it for next time.

I feel most blessed when I am with family, watching the passing of traditions and love from one generation to the next, the deep intertwining bonds of kinship and friendship that define so many of our relationships, and the quirky character of the collective family consciousness that I have always loved so completely. Luke and Dominick demonstrated a tenderness towards their young cousins that they don’t always share with each other, and I was so, so glad for the chance for them to let that core of sweetness shine and for me to witness it, and feel it wash over me, a much-needed cleansing and reconditioning of my hard-working, oft-rattled mother spirit.

And suddenly, it was mid-August already. The previous few weeks of summer had rolled along, and I was feeling glad for my decision to postpone my nipple surgery, and give myself a break from the OR and all its trappings. I hadn’t had a doctor’s appointment that was cancer-related since July, just visits to the physical therapist and the acupuncturist. Little by little, I was cleaning out, the fridge, the pantry, the closets, those dusty boxes of old photographs, those fusty places inside my soul, getting rid of what’s not working, what doesn’t fit, what should have gone by way of the recycling bin, the Salvation Army, the trash can long ago, what makes my stomach turn, what maybe, just maybe gives me cancer. I was feeling stronger, lighter, cleaner, more centered. Thanks to all the distractions, I hadn’t thought too much of the cancer in a while; my new girl had settled in so nicely that she barely made a peep. And it was only every now and then that I would catch a glimpse of her in the mirror, and expect, somehow, to see an expanded, swollen, bigger girl, like the temporary expander girl that grew so out of control before my exchange surgery did away with her and restored my chest to a more respectable size and degree of lopsidedness. Instead, there she was: still without the adornment of nipple and areola, yes, but still respectable, properly sized, comfortable, perfectly breast-soft. It was amazing to realize that as I ran about, she was quiet, happy, and I forgot that she was in any way different. In fact, there just weren’t a whole lot of things in my life that were screaming “You just had breast cancer! You’re still under reconstruction! It ain’t over yet!”

Until that day in August.

It had been an uneventful day. We’d been shopping at a few of the big box stores just south of us in Hadley, our once-every-few month’s cautious foray into the world of plastic hyper-packaging, migraine-inducing fluorescent lighting, and rows and rows of offgassing rubber sneakers.

Dominick and I were standing in an aisle near the check out line in Target when I first heard him, this guy brazenly talking about some woman he knew to the two women who sandwiched him. I looked up to see him, red hair aflame, blathering on in a loud, showy voice, as if expecting an audience. I only caught the last bit, which he said in rising, dramatic tones with a sweep of his arms, and could easily have prefaced with “And on the eighth day…” It had that kind of Creationist pitch to it, his voice expanding and filling the space around him with a preacher’s fire. I wanted to punch him.

“And then,” he said, “God gave her cancer—because she was a witch. It was perfect.”

Perfect? Cancer? Because she was a witch? Perfect? Did he just say that? My insides lurched—it was as if someone had suddenly thrust a lance into my heart and left it there to bleed out, fester, and spread its menacing poison throughout my body. Or, worse, as if someone had just branded me a witch, red flashing arrow pointing at me, a Scarlet Letter on my sleeve proclaiming my guilt. I couldn’t move my body, but somehow, as Dominick too my hand, I found my voice.

“That’s not why I got my cancer,” I said, loud enough for the guy to hear me.

He turned around, tried to get a fix on me, and stumbled, “Oh, well, I had childhood leukemia, so…”

“…So that makes it okay for you to say something like that about another person?” The guy was still stumbling, “Ah, I…er…” He was young, in his twenties, I could see that. And clearly he had been trying to impress the two women he was with. And, of course, he had trotted out the childhood leukemia excuse. But he knew better.

Dominick and I watched them walk off, the guy somehow resuming his pontificating strut. I could hear him continuing to make justifications and excuses for his behavior the next aisle over, “Well, I had leukemia, so it’s okay for me to make jokes like that…” Jokes? Is he kidding?

I ducked into the shaving cream aisle and was stunned at the tears that came so easily. After a little while, I felt Dominick’s arms around me. He looked up at me. “Are you alright?” I, of course, was worried about him. I wasn’t sure he’d ever heard anything so horribly mean in his life. I squeezed him close to me.

You know that that is not why people get cancer, Dominick. That is not why I got cancer. That’s not how it happens.”

But I felt the sting of what the insensitive guy had said. And I could not help but think, is that why I got cancer? Because I did something wicked and God—or whoever dishes out the terrible diseases and debilitating accidents to the masses—decided to fix me by giving me cancer? Does it work that way? Some terrible game of Comeuppance? Was Cancer my just desserts?

I would see the guy again two more times before we left the store. Each time, I could feel his piercing gaze, eyes boring into me, and I’d look at him and wonder what he was thinking.

Suddenly, after weeks of truly feeling cancer-free, the cancer was in my throat, in my heart, in my belly. I tried to breathe it out, but realized that it was there, heavy, sticky, slick, and wasn’t about to go anywhere fast.

However upsetting to me, the whole episode brought me to a new place of thinking about my life, and allowed me the opportunity to really sort through a lot of negative emotions around the disease, and myself, particularly, why I might have gotten cancer. Yes, I am a witch, it is true, my children tell me that I am “so mean” all the time, and as a descendant of George Jacobs, who refused to confess to his crime and so was hanged at Gallows Hill in Salem in 1692, I must have inherited his wiccan bent (I do like cats), but looking beyond the obvious, what exactly is this cancer telling me about myself? When something like cancer happens, it’s only natural to start asking why.

At the beginning, I viewed cancer as some sort of failure on my part. It made me feel weak, diminished, not quite up to par, flawed. My first response was to wonder what I had done wrong. Hadn’t I been eating well? Well enough? Was the whole foods diet that I’d been eating since about the age of 25 not been healthy enough? What about all those damned supplements I'd been taking? All those antioxidants I'd been eating? I had tried so hard to be on the forefront of the latest research with everything—diet, environmental and health issues—that I thought that I’d done my best to protect myself and my family from the gnarly chemicals and carcinogens that we do know about. But clearly, it was not enough. I suddenly worried that if I couldn’t keep myself safe, how could my own children trust me to keep them safe? My doubts began to infuse my every action and choice with incessant queries: is this ok? Am I doing this the right way? Should I be eating this? All gadflies to an otherwise delightful picnic of life.

I had not been rewarded, it seemed, for my conscientiousness. Where was my f-in’ gold star?

Of course, maybe I just got unlucky. Unlucky because it all must be so bloody complicated, with all those separate risk and protective factors working at odds and in concert with kismet and serendipity and luck, and maybe, just maybe, some unseen, unknown forces spiraling about, and shuffling the deck. Like the gods meddling in the Trojan War in Homer’s epic The Iliad, maybe my spirit guides fought amongst themselves for a while before deciding to give me cancer, and maybe some were devastated, and were against it the whole time, as some of the Sumerian gods in the Epic of Gilgamesh, after they ravaged man with the great flood. I can almost hear their voices: Well, she didn’t listen the last time. We warned her. Remember? Back in the winter of 2002? We gave her pneumonia, and she still didn’t listen to us. So we gave it to her again, and well, she took better care of herself for a while, but then fell right back into the slump of putting everyone else’s needs before her own. What was she thinking? Homeschooling? We told her: Engage in more self-directed creative play. Have more fun. Do your thing. Find your groove. Did she listen? No…Well, maybe she’ll listen this time. It’s decided: give her breast cancer.

It reminds me of the ancestor spirits arguing over Mulan’s fate in the Disney movie of the same name that Dominick watched over and over and over again when he was about two.

As soon as I received my diagnosis back in February, I started to look for answers in every possible cobwebby corner of my life—and yet, I was determined not to spend too much time searching and sifting through a travelogue of all the possible determinants and villains. I mean, what good would that do? Well, I could tell myself, I got cancer because I ate too many plain hamburgers from McDonald’s when I was a kid. Or, I got cancer because I drank myself silly one too many times in college. Because when I was little, I liked to sniff erasers and markers, drink dill pickle juice by the gallon, and eat play-doh. Because I live too close to Vermont Yankee Nuclear Power Plant, and for whatever reason, I’ve absorbed enough radiation to mix with all those damn chest x-rays I’ve had to develop breast cancer. Because I didn’t switch over to paraben-free personal care products soon enough, and I wore a bra that was too tight for awhile and interrupted the flow of lymph drainage, when I should have been fluffing my breasts on a regular basis. Chances are, my vitamin D deficiency last year (and for who knows how long before that) did not help matters.

But truly, can we really ever know? As much as I’d like to think I could pinpoint the reasons, I know it’s a near impossibility, because there is so much we don’t know about the workings of the disease. And maybe there’s something in the environment that hasn’t yet been identified as the true culprit; maybe something in our toothpaste, our drinking water, our chemically treated cotton sheets, maybe something seemingly benign and trusty, something promising and new, something old and tested that somehow has grown deadly. There are suggestions, of course, about this and that having an impact, but very little solid evidence that absolutely links certain behaviors, foods, conditions, and environmental factors to a higher risk factor. So, what to do, what to do?

Don’t smoke. That much we know.

And drinking? Well, there is a direct linear relationship between the amount of alcohol women drink and their risk for getting breast cancer. I stopped drinking when I was 26, but I suppose I drank enough in my wild misspent youth for a lifetime, and so maybe, the damage had already been done.

I wonder, though, about the more furtive bandits, those emotional states and behaviors that take advantage of certain physiological and environmental conditions to make cells start to behave badly, mob bosses and henchmen. Does haste, for instance, rushing about like a madwoman, eating on the run, barely cramming in exercise, meditation, and all the other important stuff, lay waste to healthy cells? Does guilt? Fear and loathing? Self-doubt? Gluttony? Does carrying around unresolved issues, unrequited love, unspoken truths, unfinished business? Is it all the broken parts of us that we lock away in a box that somehow get out and demand retribution? Perhaps that which is locked inside festers and turns on each other, taking hostages, Guilt grabbing Fear, Fear strangling Self-doubt, Secrets everywhere, and in the ensuing battle, the white blood cell leukocyte SWAT team rush to put a stop to it and in their absence, the healthy cells turn wicked and cancerous and since attention has been diverted somewhere else in the body, they are allowed to simply be—and do not get attacked or flushed out or expunged—but grow and multiply and start to wreak their special brand of havoc.

I can’t pretend to understand the way cancer works, but there’s something intimate about my relationship with mine, in the way I‘ve lay with it, imagining its edges in the dim light, visualizing it leaving my body in deep exhalations, and never returns, the hollows filled now with a light that illuminates a renewed sense of vigor and vigilance from within, that makes me feel as if, in my acceptance, I have come to know it. But I’ve also always thought of it as a beast, a monster to be slayed, and it has helped me summon my warrior spirit and fight for better days.

There’s an old Chinese saying, that to slay the beast you must first see its beauty. Make beautiful your ugliest, toughest adversary, then kill the beast.

Did I somehow give the universe the message that I wanted this cancer? That I was looking for a diversion? A major distraction? A break from the mundane? An excuse to reconfigure my life, make the necessary changes, and live, paddling onward, a more happy, healthy me? Does living in the dark force us to reach and stretch more earnestly for the light, rejecting the etiolation and creating a better life instead? Are we meant to process the bad stuff in order to get to the silver lining? Is that the gift? Is that the beauty?

There are many theories, of course. Every part of the world seems to have its own idea of what might be behind breast disease. American medicine approaches breast disease very differently than, say, Traditional Chinese Medicine, with all of its holistic trappings. The ancient wisdom of TCM suggests that throughout the continuum of breast disorders—breast pain, menstrual cramps, breast lumps, irregular menses, and finally, breast cancer—the severity, duration, and complexity of the imbalance and stagnation of energy throughout the breasts and body determine whether a woman will get cancer or simply have benign breast lumps.

I’ve been reading Ancient Healing for Modern Women by Xiaolan Zhao, and I’ve been intrigued by the connections I’ve been able to make between my cancer and earlier signs that something was amiss. When I was an older teenager, my periods were so heavy and so painful that I went on the pill to try to even things out. In my twenties, my periods continued to be difficult, until I made some dietary changes, adding calcium, magnesium, and vitamin D3 to my supplemental intake, especially at the critical time about a week before menstruation. When I was in my 30’s and breast feeding my babies, I developed painful mastitis on many occasions. And when I closed in on my 40th birthday, and started to notice a new density to my breasts that made self-exams dauntingly difficult, I made an appointment with a general surgeon to better understand what was happening and to make sure everything was okay. I would leave his office with some reassurance that everything seemed okay and with a waterproof guide to self-exams that I would hang on my shower head as a reminder to do my monthly exams; I only noticed the Nolvadex Tamoxifen Citrate-sponsored “Now there is something you can do” declaration on the top of the card after I had been diagnosed. Oh, the irony! And the surgeon I saw? He was the same wonderful Dr. Fox who would later perform my surgical biopsy, deliver the news of my diagnosis, explain my options, and so generously remove my drain after my mastectomy.

In the year or two before my diagnosis, there were additional warning signs: my periods became more and more irregular, arriving earlier and earlier, with terrible breast pain and distension, intense bleeding, and deep furrows of depression that exhausted all my energy. I bled excessively, and struggled to shake off the fatigue. It seemed like I had my period all the time. It was unbelievably depleting. I became convinced that I was perimenopausal, but was told I was “too young.” I tried to spend more time in moon light in an effort to regulate my periods, I tried to rest up, and it worked for a while, but by then, I think, well, who knows.

Perhaps if I had known then what I know now, I would have been able to treat my symptoms differently, listen to the pain and what was underneath it a little more clearly, and taken more time to take better care of myself and these issues that so many women in our culture sweep under the rug, ignore, attribute to the “curse,” accept as part of the female bargain. Little did I know that it doesn’t have to be like that. Now I know that many of those symptoms were signals of an imbalance within, a restless, disorderly, inconstant flow of Qi and Blood through the meridians that pass within the breasts: the Liver, Kidney and Stomach Meridians, and the Chong Mai, or Penetrating Vessel, which according to Zhao, “originates in the Uterus and branches out in tiny vessels throughout the breasts. A blockage in the flow of Qi and Blood within any of these Meridians can therefore cause Stagnation in the breasts and lead to a continuum of progressive breast disorders that may begin with premenstrual breast distension and over time evolve into more serious diseases, including breast cancer.” She goes on to say that emotional distress is the biggest factor in upsetting the flow of Liver Qi, that ancient practitioners wrote that “the emotions are the most significant cause of breast disease…Depression injures the Liver, pensiveness affects the Spleen, accumulation develops in the Heart, and the channel-Qui stagnates and generates nodules.” Sounds like the mob bosses and the henchmen. And nodules? That’s exactly how my cancer was described before I or anyone knew it was cancer. A nodule. Something that magnified retakes couldn’t make go away.

It’s been fascinating to read up on as much as I can, to glean from many different sources and philosophies and medicines to create and customize a life plan of good health that works for me. We’re all so vastly different, ultimately, despite our genetic make-up, and the bottom line is that we can follow other people’s ideas about what the proper diet and exercise and lifestyle regime might be, but what good would that do us? It’s our responsibility to find out what works for us—and of course, it takes time, and a lot of trial and error. But it’s worth doing. And since we’re always changing, it’s something that doesn’t just need to happen once, but many times throughout our life times, an ongoing process of learning about ourselves and how we interact with the world around us, what feels okay and what doesn’t, what makes us feel good and what makes us wish we hadn’t gone there. Does it mean that if you engage in this process that you will enjoy perfect health? No, of course not. There’s simply too much we don’t understand about the course of disease—and there’s so much, too, that is well beyond our control. But as I always tell my kids, it makes sense to try to control what we can. Eat in balance, taking the time to honor the food we eat. Know where our food comes from. Take the time to learn how the animals we are eating have been treated, what they’ve been fed, how they’ve been slaughtered. Slow down. Don’t eat too quickly. All that, it seems, is the easy part.

The emotional piece has always troubled me, in part because I know it just may be the most important one, and the one that has been most difficult to address and therefore, “fix,” if one can truly “fix” emotions, but also because it’s elusive, ever-changing, and hard to get to. I call it gut-diving, traveling through your deepest layers, sifting through a lifetime of sediment. It’s amazing what rises to the surface, and declares itself.

My acupuncturist has been a major help with this piece, and has helped me move forward through some very tough months with a sensitivity and intelligence that I am grateful for. Every time I have seen Dan, I have had a different experience, and each time, I’ve felt significant changes follow in my life. It’s something I really look forward to, because no matter how crazed I am feeling when I head into his office, I emerge feeling relaxed, mellowed, and centered. Sometimes, when I walk into one of his treatment rooms, I only have eyes for the browned leaves that hide amongst the vines of ivy encircling the room. I’m better now about suppressing these little strokes of OCD, but sometimes it’s all I can do to stop myself from removing all the dead leaves and putting them in a neat little pile. I know that it’s just a distraction that my mind has manufactured to protect me from myself.

Dan begins each session by asking me questions about how I’ve been feeling and what’s been going on with me—physically, emotionally, mentally, spiritually. I feel just at ease talking to him about how I’m beginning to really miss the reassurance of a monthly period than I am about feeling unable to move forward on some key decisions in my life. We talk about any indication of movement or changes since the last session, and by then, the percolating energies of my imbalances have bubbled sufficiently to the surface so that by the time I take to the table, where Dan takes my many pulses, he can easily discern what the next course of treatment should be.

Earlier this summer, Dan burns small cones of Moxa (Mugwort leaves) to heat my belly button. But first, since my belly button is so cavernous and deep, he fills it with salt, to give the Moxa a stable platform. After four or five burnings, the salt feels nice and hot, and I can feel the heat start to work its magic. Belly button encounters are always strange, and this one was no exception. There’s that primal tether to the umbilical cord that brings about the deepest cellular memories of being nourished in utero, and recalls the births of my own two children, an obvious nod to motherhood, that critical primary relationship that revolves around our own mothers, our children, and all the various creatures we tend to. And there’s the bizarre feeling that it’s simply not a spot on your body that’s usually touched, that in all its awkwardness, it leads to some kind of inner roadway spiraling down to your most faraway, mystical places.

A few minutes into the treatment, I feel myself starting to fall, street sounds fading around me as I begin to travel along that roadway, taking me under and through delicate layers of memory and consciousness, until suddenly, I’ve landed, and it is several springtimes ago, and I am taking care of a stray mother cat and her four brain-new kittens for the local humane society. Two of the kittens need to be bottle-fed around the clock; one simply will not nurse, and her mother has rejected her. The other, Moosie, is able to fight for a nipple and regained her strength, but, after many nights of exhaustive care and worry on my part, tiny PeeWee dies. There, on the table, I am startled by tears, those last bits of grief for PeeWee trickling out, along with the guilt I felt for not being able to save her, as if it were some failure, some flawed mothering on my part, a blasted inability to feed her, nourish her, save her, that caused her death.

I can feel the tears start to pool and collect in my ears, and then, I am dropping, deeper, and my old cat Chubby, a big black and white, whom I had had since the day his mother squeezed him and his two siblings out in the long closet on our back porch my senior year at Williams, appears before me. We are at the vet’s, and he is on the table, and they are trying to euthanize him, but after two injections, he lets out a raspy mew that sends me reeling. The vet says she would have to take him to the back room, where, I suppose, they might crack him over the head with a frying pan and be done with it. But this is one of my babies. I feel, again, the sadness at having to put him down, and the guilt, ah, more guilt, at realizing that my life has become too busy, with two young children, a dog and a cat, to give him the care he needs, and there he is, at the age of 16, with a nasty blockage in his intestinal tract that has been starving him for days, weeks, even. The decision to put him down, however clear, blew my heart out, and while I wailed for days after I had had to put his mother, Kitty, down, I grew numb with the bleak understanding that our beloved dog Zephyr would be next.

My tears overflow their salty pools in my ears, and drip down my neck. And then, as quickly as they came, they are gone, and I am floating deeper into my own childhood memories of breakfast, of all things, a meal made special each day because my mother was there to make it, and a meal that my older son so often refuses to eat, a meal that has become symbolic of my own ability to feed, nourish, mother him. And there I am, drifting between the layers, trying to let go of the guilt and sense of failure seeping out through my tears, when Dan comes into the room to recheck my pulses.

I leave that day with the salt in my belly button and tears in my ears, and the realization that so much of mothering is about nourishing, feeding, nurturing, that it is ever-evolving as your children grow and change, that it was time to read up on adolescent boys, and that I’ve made mistakes, that we all make mistakes, and it’s okay to forgive ourselves. With PeeWee, I hadn’t been able to feed her, and I hadn’t realized how much of that mother-guilt I had taken on, now rising to the surface as I struggled with getting Luke to eat something, anything in the mornings. What’s a mother to do? On the way home, I stop to pick up two books of adolescent boys at the local library, books I should have read years ago, when I struggled to comprehend the antics of the neighborhood boys and all their warring, competitive, testosterone-fueled ways.

A week later, I am at my wit’s end with the hot flashes, and strangely, I have not been writing. It has not felt intentional, just the way it is. But the heat! Rising through my belly and chest into my big, heavy, cumbersome head like a bellow of thunderous heat so hot I wonder if my skin might melt right off, the heat is driving me loppy, especially at night, while I try, desperately, to snatch some uninterrupted sleep out of the thick night air, and instead, wake up over and over again, too hot, then too cold, then bathed in sweat, and on and on until the morning breaks and I can get up and be done with it for awhile, save for the Medusa curls it's given me. I’ve been tempted to shave my head for relief, donate my hair to Locks of Love, and be done with it. And I’ve been hoping that someone could tell me what these side effects mean, if anything, and how I might consider or even categorize them, in an attempt to quiet the worries that swim in my belly like snakes in an Indiana Jones movie.

Should I, for instance, think of the hot flashes as a signal that the Tamoxifen is doing its job, much like the morning sickness during the first trimester of pregnancy can be taken as an indication that the embryo is developing into a healthy little fetus, the nausea and fatigue merely by-products of the ultimate creative process and all intense energy going into constructing a perfectly healthy human being? Does the presence of all these side-effects—seemingly ceaseless hot flashes, a totally disrupted menstrual cycle, here to day, gone tomorrow, with PMS symptoms building in severity over weeks only to implode in a hideously lengthy and heavy blood-fest complete with clots and all sorts of other things that make me wonder just how does one sort out the Tamoxifen-fueled whacko cycle symptoms from something more serious, like Tamoxifen-fueled endometrial cancer symptoms—mean that the Tamoxifen is doing its job magnificently and efficiently (and maybe, there are very few estrogen-fueled cancer cells for it to find, hurrah) that it has a preponderance of time and energy to spare, and waste, on bugging me with hot flashes and other menopausal mayhem that has made summertime more bummertime than I had hoped? Could the hot flashes and disruption to my cycle simply be by-products of a job well done?

Dan, bless his heart, treats the heat, and I leave with limbs prickling for a few days, and then a swampy feeling fills my gut, and it is gone. A week later, he treats the heat again, on a few different meridians, trying to expel the excess heat in my stomach. My face flushes as the heat rises up and out. Two days later, I feel noticeably different, and then…

…I write this:

Why, on day 38 of my cycle, do I suddenly feel like I am ovulating, or just about to get my period, my breasts tender (even my new girl!), a bit of gritty pain in the ovary-sphere part of my belly? Why now? What the hell is going on? Is this what I can expect? Totally madness? Something different every cycle? Some different configuration and duration of symptoms every cycle? Isa the Tamoxifen just messing with me? Are these teaser symptoms? And just what defines a cycle anyway? A start to finish process, complete with ovulation and ending with menstruation? What happens if there’s no menstruation in there, just ovulation, or something that feels strangely similar? Can it be considered an actual cycle? Or is it just some sinister loop of PMS playing over and over again? Oh, shoot me now!

Finally, I sleep.

And then, suddenly, I need to write, and I wake up early in the morning with words and thoughts flowing out of me, except I have no where to put them. The composition notebook that is usually next to my bed (and in my car, and on my desk, and …) is gone, so I scan the room for something, anything I can write on, and find a More magazine. I grab a pen out of the drawer of my bedside table, and find a few pages with limited white space, virgin territory, and start to write. Scribbling hastily, every which way, along the edges of the page, over light skinned faces and taupe skirts, wide white toothy grins and honey colored hair, I write within the white margins of the page, sideways, upside down, here and there. And as I write I realize that I am fighting for space, for the chance to tell my stories, for my voice to be heard, to move beyond the borders, the margins, the page, and the scattering of expectations around what I’m supposed to be doing with my time. I run out of space and turn the pages, looking for unchartered territory, a new range for my roving scribbles. Dan, it seems, has unblocked me. All that heat that had been trapped is now coming out, spilling out in words and phrases and sentences and paragraphs and it’s still only 6:15 in the morning. I write in the blue light, I close the magazine, put down the pen, and fall back onto my pillow, closing my eyes for a brief few seconds before something else awakens and insists upon release. So I sit back up, grab the mag, and dive in, again. This I do over and over again, until Dominick comes in at about 7 and rescues me. Mom, he says, what are you doing? I’m writing, I tell him, showing him my words on the pages. He laughs. I realize my hair has curled overnight, and sits like a crown, a very messy one, atop my head. Dark circles ring my eyes, and wouldn’t you know, I’ve gotten my period. Halleluijah. Day 39. It seems that the new moon has brought with it a fresh currents of energy, and everything is flowing again, finally. Funny how that works.

These past few days, I have been writing at a furious clip, sneaking off to steal five minutes here, fifteen there, just to put down some words. I am reminded of being young, when all I wanted to do was write, and I would feign illness in order to stay home with my stories, caressing the words into sentences and recreations of my own personal dramas into stories that somehow made life seem more manageable. It was always my way of processing, and letting go.

Some things never change.

I've decided that I don’t really think I’m a witch, and that I don’t really know why I got cancer, given all the magic at work, and all that is quite nearly impossible to understand. But I'm determined to learn all I can, and squeeze every last bit of positive life change out of it. Because in many ways, I did get my gold star, and I have been lucky. I didn’t have to go the chemo route, lay strapped to a drip bag of poison, and lose my hair. My surgeries went supremely well. Reconstruction has been blessed, my new girl fitting right in without complications, jealousies, or difficult behavior. My doctors have been fabulous. The insurance company has kept up their end of the bargain, and covered what they said they would. I have been graced by the love and support of friends and family and even total strangers, who have offered wit and wisdom and inspiration that has brightened my path to this very moment of swift, deep healing, and good health.

But I have thought that maybe, in some way, I’ve gotten off easy because of it, and maybe, I’ll have to pay for it down the road, and make some other kind of sacrifice so that it all balances out somehow. Just what does it mean in the cosmic balance, the give and take of life? Is this my just reward for some earlier sacrifice? Or will something be taken from me later? Perhaps someone before me gave a little more so I could give a little less, my grandfather, perhaps, when they took his leg, or my grandmother, when she battled Crohn’s disease, breast cancer, and emphysema, or when they lost their daughter, my mother and my aunt, their sister.

There’s a bit of karma in everything we do and everything that happens to us; at this point in my life, I move forward with the belief that we do the best we can, and everything else is just water under the bridge. I suppose I’d rather spend my time catching the flowers opening their petals to the sun, watching the march of shadows and sun across the lawn, feeling the flow of wind move through the trees, a sublime reawakening of earthly joy, a stirring of the soul. It’s all I can hope for.

One should perform karma with nonchalance without expecting the benefits because sooner or later one shall definitely get the fruits. ~ Rig Veda

1 comment:

Russell said...

Nicely said. Thank you, Liz. I don't have cancer, breasts, or hot flashes, but I think I get what you are saying. I hope doing my best is enough.