callithump.com ... home to the writings of Sophia Kell Hagin

après cancer

May 2005

I don’t have tits anymore. They weighed more than two pounds — each — just before they were taken, splattering and lurching all over the space in front of my chest like a couple of drunks. Sweaty, weary drunks.

My breasts went crazy gradually. Didn’t much wear a bra ’til I was 30, passed the pencil test for a decade after that. But time and gravity took their toll and eventually they became 40Ds, pulling my shoulders into a curl as I worked. At night, stiff and aching, I’d often carry them upstairs, holding them high and calm and quiet, one in each hand, as I went. And I growled when Sem said “breast reduction.”

Ground zero

Then, in one devastating afternoon, that looming discussion became moot.

It was the first anniversary of September 11, 2001, and I watched the somber ceremonies and interviews on a blurry waiting-room TV, my breasts wrapped in an oft-laundered hospital gown as I waited to get the all-clear on my annual mammogram. My name was called and I headed for the darkened room where a radiologist was reviewing my x-rays. Right after my chirpy (defensive optimism) hello, the radiologist gently pointed to a small but unmistakable spot that wasn’t visible on last year’s pictures. My stomach was already twisting tightly when he said he wanted to do a biopsy. Right then. By the time I got back to his little office after retrieving Sem from the waiting room, I could feel the buzz through the Breast Centre’s hallways: Today they had a hot one. Me.

Everyone says I handled it really well. Like there’s a choice. I suppose one could do a freak-out — you know, cry, lose control. But what’s the point? It’s like a temper-tantrum: Doesn't help because this is one you can’t get out of. So I looked at It, my stomach unclenching as I heard a nearly imperceptible whisper just behind my ears chanting ‘omigod, omigod, omigod . . .’ I felt wide-eyed. I was looking at my death. Mine and no one else’s. And My Death looked back at me, looked me in the eye, a shadow in the doorway of the dark little room where the radiologist poked in his enormous biopsy needle, fishing in my right breast for the best angle from which to take a core — like an ice core — of the tumor he found.

Sem was wide-eyed, too, but had already yielded to our new reality, traversing in mere seconds from a dumbfounded “What?!?” to the protector’s quiet, grim courage. While the radiologist and technician worked, Sem hovered nearby, listening hard to everything they said, searching for what they saw in the undulating ultrasound image, already engaged in the dawning battle.

“Plan to come back tomorrow for another biopsy if this one’s negative,” the radiologist told me as I got ready to go home, “because ‘negative’ probably means I missed it.”

He didn’t miss it. It was a 0.60-centimeter invasive ductile carcinoma. And so began six months of combat.

Sem’s vision

I had a lot of decisions to make and the choices I made range, I guess, from the cautious to the unorthodox. I no longer have tits because I opted for a bilateral mastectomy (that is to say, take ’em both) rather than a lumpectomy/radiation on my right breast. My chief reasons:

The fairly high rate of cancer recurrence, either in the same or the other breast, would spawn way more anxiety than I wanted to deal with if I didn’t have to.

Having no breasts makes mammograms forever moot; I thought this was worth it because

(1) Post-radiation scar tissue makes mammograms tougher to read, which ups the odds that recurrence would not be discovered as early as possible;

(2) After lymph nodes are removed during a lumpectomy, the affected breast can be impacted by lymphedema, making mammograms (which breast cancer patients with breasts have plenty of after their diagnoses) even more painful — nor is it entirely clear (to me, anyway) that post-lumpectomy mammograms don’t trigger swelling in large-breasted women.
Sem had a vision: “I saw you standing there, giving some guy directions,” she said to me with a smile, “and you looked just great!”

I concluded after the fact that I’d made the right decision when the pathologist who sliced and diced through all that breast tissue found an undiagnosed lobular in situ (pre-cancerous) tumor in my left breast.

It’s trying to kill me

Unfortunately, that wasn’t all the pathologist found. Although the lymph nodes taken by my surgeon were clean, he (and the others we went to for additional opinions) noticed ‘an LVI focus’ — at least one cancerous cell loose somewhere in the lymphatic/vascular system between the tumor and my lymph nodes. Even though it was very small, maybe my cancer had already metastasized. Maybe it was already in a lymph node not taken by the surgeon, still in me. First one oncologist, then another, advised Sem and I about the odds: X percent of people who do this survive five or more years, while Y percent of people who do that survive . . .

Six of one. My ability to live coming down to a bet on the odds, a card-table gamble. I remember a moment of anger, of supreme irritation at these people so articulately reciting the studies and the numbers — for them it’s academic. “It depends,” they said sympathetically from an immense distance, “on how you feel about risk.”

Here’s what I feel about risk: It's trying to kill me, it's trying to kill me, it's trying to kill me. So I’ve gotta try to kill it first.

I call the chemotherapy I had ‘chemo lite’ — four treatments of adriamycin and some other stuff, a standard cocktail that made my hair fall out and my intestines churn, despite all manner of anti-nausea meds and marijuana. But I managed to keep to the schedule — a treatment every three weeks as long as your blood cell counts bounce back sufficiently. Mine did because Sem and I worked at it.

When my hair started coming out in chunks, I shaved off what remained and mostly wore a little black beanie cap I found in a local store. I refused a wig the same way I refused a prosthetic bra with fake tits; I didn’t like my bald head any more than I like the scoop-outs where my breasts used to be, but I’ll be damned if I’m going to pretend and hide. Sem and I made a sexual joke about my lack of pubic hair. We never stopped making love. I managed to exercise on the treadmill when the nastiest of the upheaval in my gut abated. Sem fed me carefully and well, responding to the worst of my whims (like potato chips and whipped French-onion-flavored cream cheese) with more sensible suggestions that met my cravings without further excoriating my innards. I spent a lot of time on the sofa foggily watching the used videotapes that Sem acquired in volume with each trek to the grocery store. And I worked some of the time, too, maintaining a link with what used to be my life and using the pride in not missing even a single deadline as a kind of hope that I might actually get my life back.

It was awful, but I am aware of how profoundly lucky I am. I have acquaintances who, to save their lives, have endured much, much worse and for much, much longer. I was finished in February and my memories of the next few months are blurred by an exhaustion as much mental as physical. While I was enduring chemo, my mother died — a distant, surreal event made more surreal still because my cancer diagnosis had turned our decade-long estrangement into a careful but felt e-mail communication. And then she was gone, whisked away by some mysterious, unnamed ailment, her body worn out from a lifetime of moderately-paced but unrelenting self-destruction.

Working hard

So here I am. I seem to be healthy. The tingling in my hands and feet — apparently the after-effects of the adriamycin — has abated. The bout of shingles (a not-uncommon post-chemo experience) that struck the summer after my treatment has not recurred. Even the ferocious hot flashes that have plagued me for the last two years seem to be ebbing somewhat.

I take tamoxifen every day. I think about death — my death — every day. I don’t have mammograms to worry about, but the last time I got checked out by my Breast Centre docs, one of them found a hard, somewhat swollen lymph node. On my left, noncancer side. Probably nothing, they said. But it is something. It’s a signpost of mortality, out there waiting. Reminding me that everything — everything — is finite.

I work hard to be healthy. I am slowly regaining the strength I lost. I can actually do seven full push-ups these days, and I complete seven each morning (right after swallowing my dose of tamoxifen), as well as an assortment of abdominal exercises, with religious fervor. I walk miles and miles, outside when I can, inside when outside is too hostile. Thanks to Sem, I eat very, very well.

And thanks to Sem, my intermittent bouts of depression have repeatedly surrendered to my will to live, to love, to stay as long as I can with the most remarkable, spectacular woman I have ever known.

People ask me all the time (looking me in the eyes with Significance) how I am. I smile and I can feel the gleam in my eyes when I say, “Not dead yet!” For their sake, I try to remember to wink.

August 2009

I’ve finished my five years of tamoxifen and have rejected the docs’ pushing me into an aromatase inhibitor. I tried it for a month, read the (meager) studies, and decided to take on the additional three percent risk of recurrence in return for the avoidance of all those nasty (and, as best I can tell, under-reported) side effects. That was a year ago. So far, so good.

It’s almost past-tense now, at least in my head. I have no illusions about being ‘cured’, but I seem to be quite healthy. I’m up to 30 full pushups every morning these days, which I knock off in a single rep (honest!). The shadow lurks in quiet corners, of course, but for now at least I can entertain the possibility that it won’t be breast cancer that kills me.