Thursday, February 12, 2009

History, Herstory, Mystory, Yours

Hello out there!

I've been remiss in posting; apologies. Life has pulled me in many different directions this winter--doesn't it always? And despite scribbling madly and frequently in the many composition notebooks that inhabit my personal space (bedside table, car, pocketbook), I've been a bit preoccupied and have not quite been able to sweep away the clutter, tune out the distractions, and put thoughts down here. It's been mostly the usual--the incessant demands of the domestic front, homeschooling, kids, winter coughs and Daisy's boo-boos--with the twist of the unusual thrown in, just to keep me on my toes--getting on with the whole body reconstruction, and wondering, worrying, and finally getting to the bottom of my nodule-infested thyroid.

But I am here. And I'm certainly okay. I don't want anyone to think I've grabbed the keys, hopped in the car, and sped away, never to come back, or locked myself in the root cellar, flushed myself down the toilet, or fallen into a time portal, only to be whisked away into another dimension, unable to extricate myself from a flipbook of epoch encounters that have left me stranded on the beach with John Locke and Sawyer on the metaphysical island in Lost. There are times when I feel quite stranded, when I feel that I might as well flush myself down the toilet, or when I would love to find a time portal and escape, if only for a few hours, out of the here and now and into another space and time, but I haven't gone off the deep end just yet. Truth is, I've been trying to get out and enjoy winter, train for the 3-day, keep the kids on track, stay afloat, and try, try to remember to give the dog her phenobarbital and take my Tamoxifen, and not the other way around. Most days, there is time for only so much--take a nap or go for a walk or write or unload the damn dishwasher and drive the kids to the gym. The dishwasher and the kids usually win out. I do wish there was time for it all. Some day, perhaps, but not now.

I've tried to make peace with the wicked, relentless wintry cold, to find hope in the expanding light of the brightening mid-winter skies, and joy in the moments that bring me into my feet again, whether I'm skiing with my kids, dancing with myself, or singing my way into Hollywood week (I know, I know, I'm way too old). And too, I've experienced those depths of stark loneliness that have made me understand better why it is some people turn to their gods, for companionship and support, for love and acceptance, for some kind of reassurance, so that they don't have to go it alone. I too have had to press the hands of fear back down, away from the clutch of my throat, back into the annals of my yesteryear, to make a little room for forgiveness and redemption amidst the vicious entanglement of self-doubt that only clouds the here and now.

It should be history, after all. It's been a year since I first learned of my breast cancer diagnosis. I'd like to think I was done with all that. I've had my surgeries, gone through my reconstruction, assimilated the new into the old, learned a few things, forgotten more. But there are echoes and phantoms that rise up like fog every now and then to remind me that I am not done yet, that there is more work to do, always, and that there will forever be bits and fragments of the experience that I will revisit, intentionally and unexpectedly, like most everything else in life, rich with currents and tides bringing in the flotsam and debris.

About two months ago, my dear neighbor, friend, and nurse-midwife felt something on the left side of my thyroid. She has a good touch. I knew I should not ignore it. I took it to my new primary care doc, who recommended an ultrasound and started saying things like, "Well, given your history, we need to make sure it's not cancer." Bah! My history? Oh yeah, I had a history now. Bah! The mere possibility of having to deal with more cancer quickly and deftly infiltrated the little force field that I had set up to shield me from further assaults. I was amazed at how powerfully and quickly the urge to shout NO at the top of my lungs rose, at how much I wanted to deflect all of it, level the doctor with a left hook, and grab the keys... But I didn't, of course. I swallowed the NO, pushed it down deep into my throat, where it joined the countless other unspoken urges that simmer and whisper there, huddled masses, ghosts of despair. Eventually it made its way into my head, where it has remained all these weeks caught in an endless loop, No, No more cancer, No more cancer...

Two days before Christmas, I went in for the ultrasound, and asked the technician to show me her findings: nodules, it seems, had grown all over the place, nothing huge, but there they were, all lit up and outlined in fluorescent colors, like flecks of neon gold at the bottom of a dusty river. My doctor called to leave me a message. "Nothing really terrible," he said, "but we need to get the bigger nodules checked out." The poor guy had no idea how absolutely loaded his words were. Nodules? Nothing terrible? Uh-huh. The last time I had heard those words it was in response to the nodule the mammogram had just found in my left breast. We've found a nodule in your left breast--nothing terrible, but we'll need to biopsy it. I suppose nothing terrible can be terribly relative.

It took a while for me to get into see the endocrinologist, but when I did, three weeks ago, I easily explained away all the classic symptoms of thyroid malfunction. Fatigue? Sure, but who isn't tired? Insomnia? Well, every now and then, but that's been happening ever since I had kids and nursed my babies through the night. Cold extremities? Uh-huh. Runs in the family, and plus, I'm tall. Tingling in the hands? Yeah, and I've got a tremor, too, but I've had that forever, and there's some nerve impingement in my chest and shoulders, so... You get the idea. It was far too easy to blame my symptoms on being 43, on the Tamoxifen, on the stresses of the past year. But uncertain functionality aside, there was this problematic structural issue to resolve first. The docs made it clear that thyroid nodules are not like those found in the breasts. And the odds, it seemed, were clearly in my favor. Yep, I've heard that before, too. In any case, for whatever reason my thyroid has grown some pesky nodules this past year, there are two larger than the 1 centimeter-sized ones that are deemed safe but worthy of keeping an eye on that would need to be biopsied. Oh goody, I love biopsies. Shit.

The procedure didn't sound all that bad, really, and even when the doctors were explaining all the different kinds of thyroid cancer, they made the most common form and its treatment sound fairly simple: surgery to remove the thyroid (almost no scarring!), a little swab of radioactive iodine therapy, daily medication to replace the hormones your thyroid would have been generating, and voila! Cancer-free! Hmm. Cake. Yeah, but no thanks.

But you know, I didn't really want to go there, didn't really need to hear all the catastrophic forms of thyroid cancer that actually kill people, didn't really need to put any of that on my radar or in my head or into the hands of the fear that had been rising steadily since the ultrasound. Still don't. Come on already. Am I not done yet?

I'm not ready for a crash course on the thyroid, but maybe I should be: it seems that much of the breakthrough medicine that has set the medical world abuzz centers on the poor thyroid, which seems to take the brunt of aging amidst all the endocrine-disruptors and other environmental-wolves-in sheep's-clothing (ie, plastics, fire retardants, etc) that bring it on in new and disturbing ways. It's not a big surprise, then, that my thyroid is showing a little wear and tear. By some estimates, more than half of adults have somehow grown pesky nodules on their thyroids, yet another symptom of how toxic our environment has become, and how stressed out all of us are.

A little over a week ago, I went in for the biopsy. The procedure itself wasn't really a big deal--after experiencing a nipple construction, nothing seems to be much of a big deal anymore--and at this point, I'm convinced I can handle pretty much anything. I wore my one brave chick shirt (thank you, Kate). I put on my smile of steely resolve, Yes I can (thank you, Mr. President). I asked my mother to drive me to my appointment (thank you, Mom), and Dominick to keep her company (thank you, Dom). And I wished, oh how I wished, that I could ditch it all, blow it off, skip class, bag the needles and instead, take a long walk in the balmy sunshine that was melting the snow in melodious rivulets of rushing water.

The doctor was running late, but made up for it in niceness, in efficiency, in expertise. Thankully, he was not one of those you-should-be-honored-by-my-lateness kind of guys. He worked up the small sterile curtain around my neck in no time, shot me up with some local anesthetic, and started to extract sample after sample from the two nodules on the left side of my lower neck, using ultrasound to pinpoint the exact location of not only the nodules themselves but different areas within each nodule to ensure a thorough selection. It didn't hurt; I only felt the pull and push of the needle as it collected twelve samples of tissue, six from each nodule. I was not allowed to talk or cough or swallow while the needle was in, so, after offering up questions like an overeager schoolgirl in between each sample, I tried hard to stifle my inner chatterbox, (which seems to come out more during these local anesthesia-procedures, as if I'm making up for all the times I was knocked out and excluded from the OR chatter: well, I'm fully awake so we might as well have a conversation) and let him do all the talking.

A couple of bandaids later, I was ready to receive my discharge instructions: 1. take it easy for a couple of days. Milk it for all it's worth, he said. Uh-huh. That'll go over big in my house. 2. ice my neck a bag of frozen peas works best and take some Tylenol; it'll be a bit swollen and sore and 3. do something for myself: eat some ice cream, drink some wine, and eat some chocolate today, he suggested, just be sure to treat yourself. Chocolate, yes. Chocolate I will eat. It's so great when your doctor not only givesItalic you permission to eat it but orders you to eat it, isn't it? Here, Harry, have a chocolate frog. It'll make you feel better. Thanks, Professor Lupin!

With prescription for dark chocolate in hand, I left, with the agreement that I would be back in a week to fetch my results.

It was a long week. As much as I tried to keep them at bay, the uncertainties rose and swelled and fell like ocean waves during a vicious storm, knocking me off my feet, inhabiting my dreams, plunging me into a battle of wits and nerve. My acupuncturist loaned me a wonderful book written by a local woman who relates her "sudden awakening" and liberation from the fear that had gripped her for so many years and the resultant joyful calm When Fear Falls Away. There was much I took with me into the wait, but this bit below helped me remove the clutch of hands from my throat, try to breathe in each moment that presented itself, and hold on instead to the joys that ribboned through my days, like psychedelic eels that shine and glow in beautiful colors at the very bottom of the darkest seas.

No More Ache, November 5 (Jan Frazier)
"The poet Linda Pastan writes, "The world wounds us with its beauty." how this idea used to run through me like a knife: Time was always running, running out. Mortality was the dark underside of every loveliness, every pleasure. I could not look at the beautiful world without feeling its terrible brevity. I could not touch my tongue to life without tasting death. The dread of death was what fueled my poetry. I could not bear pure joy. It was as if the direct encounter with perfection might obliterate me like an infuriated god, if I failed to pay obeisance, if I did not lower my head to the feet of the inevitability of loss.

"Whatever made me think I needed the threat of annihilation to make me love, to wake me up? I thought the specter of time running out would press me to live, to stop wasting time.

"Now it is no longer so. Now the lovely sky takes me into it, blue by day, black by night. The loveliness of the sky is forever. I am forever. I no longer hold back from loving it: I will not lose it. I am the sky. Joy is unbroken, unbreakable. There is no more poignance, no more ache. It is only that I have to contain myself. When I am alone I crack with joy. I am a little child, a dog leaping, spinning in circles. Can't get enough. I don't have to stuff myself: there is no shortage. Time is a lie, a big fat lie, and death too."

Of course, when I first read this, I wondered just what the heck this woman was smoking, and how could I get my hands on some. Good pow pow will do that. But really, I think she's on to something. And she's so lucky to have found it. I haven't always been as lucky or successful--the grip of fear is menacing at times, and the joy, well, those eels are slippery, man. And they hide out sometimes, and you have to know where to look for them: close your eyes, and they're gone. It's the same game: keep eyes and heart open to the possibilities, rely not on hope for something else or something better but on the possibility of finding the joy in the here and now, in the always, even if the wings of despair are beating you down, even if the joy hides on the bottom, like psychedelic eels, or fluorescent thyroid nodules lighting up the ultrasound screen. It's in the not waiting for the threat of annihilation, for being pressed by the specter of time, before you let yourself unravel--don't wait. Just go.

The week passed, and I was grateful for the distractions of my children, who always pull me back into the present moment, and a weekend trip to Boston, which offered up a chance to breathe in the brisk sunshine and city vibe at the same time. The uncertainty of Wednesday inched closer, and despite my best efforts to not allow it to enter into my consciousness, it found me in my sleep, spilling into my dreams as ill-disguised nightmares. It seemed the horrors of the past year had begun to seep through the seams of that well-hewn lock box where I stuffed most of the deep, deep ache, the phantasms of fear, the destructive thought patterns and other mementos from the perilous journey.

But to hell with no sleep--Wednesday had arrived and I was relieved. Finally. It had been two months, way too long. So when the nurse called to tell me the results were not yet in, that I would have to wait a little longer, I was a little horrified, and disappointed, but not totally surprised. My mother was already on the way; she'd come over the trail to be with me, but now would keep going east to see a friend in Boston. The ladies from Moldova were coming to help me clean, and Dominick wasn't feeling well; I'd be able to spend the morning with him and Luke, scrub the kitchen, find a zillion things to lose myself in, maybe find time for a walk outside later in the afternoon. We had a day, after all, to walk through, to breathe in, to do.

The nurse's call in the late afternoon took me by surprise; as eager as I was to weave it into my consciousness and be done with it, I had almost forgotten this loose thread in my head. The results were in, she said, could you come in tomorrow morning? I felt the stab of urgency in my chest as I tried to gauge the tone in her voice. Nada. Can't you please tell me the results now, I pleaded, over the phone? No, we don't do that, I'm sorry. Can't you tell me anything? Anything at all? I could hear a split second of hesitation on her end, and then: Well, you should sleep well tonight. Thank you, thank you, thank you. That's all I needed to hear.

We agreed that I would come in the next morning to get the results. I hung up the phone and sobbed, just a quick release of a very palpable relief that rose suddenly and quickly, overtaking me for a few seconds, and then, vanished. As it turned out, I had too much time to think about what she had said, and started to play ridiculous, dangerous games in my head. Hmmm, I wondered, what if her idea of good news was completely different than mine? Maybe she figured I was expecting the worst, and so would be relieved, happy even, to hear that I didn't have the really deadly form of thyroid cancer, just the easy-to-treat, remove the thyroid, and voila! kind that nobody died from. Maybe she was just saying that to shut me up. But could she do that? Could she really do that? I told you--ridiculous, but there it was, all wrapped up in a ball that was bouncing about non-stop in my head. Boing, boing, boing. Bah!

Despite knowing, deep down, that all was okay, I found myself quaking in my seat as I waited for the doc to show up. Chill the f*#% out, I kept telling myself, but the shakes continued, and for a short twist in time, I was my dog, Daisy, waiting to get her nails clipped at the vet's: eyes searching for reassurance, body visibly shaking, straining on the lead to go. There were two pharmaceutical sales reps waiting for him across the hall, so when he did arrive, he was as antsy and impatient as a little boy trying not to wet his pants. He showed me the pathology report, and I should have requested a copy, because why save only the bad ones? This one was nice and short, to the point: both nodules were BENIGN, in capital letters. And that's all it said. And that's all I needed to hear, to see. I tried to ask the doc a few questions about thyroid function in general, but I could see that he was eager to 1. get his pen back that I had borrowed to write a quick note down to myself about my TSH levels and 2. check in with his drug company buddies across the way, so I said thank you and told him I would see him in another year. Who knows? Maybe they were waiting with a lovely spread for lunch, or a big fat bonus check, or a couple of plane tickets to the Bahamas. Maybe he'd prescribed so many of their superstar drugs that they were inducting him into the hall of fame. I know, I know. How cynical of me. But I couldn't help feel that the system, for all its breathtakingly executed surgical and pharmacological miracles, doesn't always serve our better, wiser selves, and our deeper, broader sense of wellness, that the incentives for doctors to prescribe certain medicines--the "chemo" bonuses, for instance--compromises the very "art of medicine" that such rewards should be celebrating.

But that's another post. For now, it's enough to know that this time, my voice was heard.

No more cancer! Yahooooo!

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