July 12, 2000
If my breasts were sisters, one would be the good sister, the other the bad. She’s out there letting her presence be known, misbehaving. Good sister is diminutive and well mannered, my left breast has rebelled against the surgical assault by becoming larger, in spite of the great hunks of flesh removed—perhaps the bad sister isn’t taking this lying down. Today we all troop into the surgeon’s office for the first post-op visit. Lift your arm, turn this way, both arms…. The surgeon has a student doctor with her, hopes I don’t mind. Of course I don’t. I’m happy to offer anything in the way of learning experience. This girl is cute, looks about fifteen, as a lot of people do these days. The surgeon leaves momentarily. This woman literally runs around her office in jogging pants and Nikes. Breast cancer is giving her a lot of business. I chit-chat with the student as I’m sitting on the table with my breasts hanging out. I might be imagining some discomfort on her part, but not taking any chances, I ask a few questions about her education, in a motherly sort of way, trying to ignore my own nakedness.
The surgeon returns and aspirates some fluid from the swollen area in my armpit. Doesn’t seem to make too much difference. She’s pretty happy with her work, smiling as she examines her sewing. And now what I’ve been waiting for—the pathology report. It will tell me everything I don’t know yet: how bad it is; how far it’s spread; how long I have to live; if there’s any point in further treatment. All that stuff. My fear is that my cancer is like nothing anybody has ever seen before. I imagine the pathologist calling across the lab, Holy shit, Norm, come and have a look at this. What the hell?
Apparently, only surgical queries will be addressed here. Every one of the players in my drama has his or her thing. And this player is in a bit of a hurry. I heard the key words in the pathology report. Nodes negative. Good. “Invasive” was there in some context, even though not lymphatic or vascular. Hmm. Narrow margins. Not good, from what I’ve read in the books on cancer, but the expert tells me she’s not concerned about that. But I’m worried about all those bad cells left behind, escaping as we speak. She tells me I have something known as atypical ductal hyperplasia. I think that means breast tissue reproducing itself at an abnormal rate. You’d never know it from the outside. She says they’ve learned that women with this kind of tissue are more likely to develop breast cancer. Seems to me like a bit of a chicken-and-egg thing. This could or could not be the only cancer I get. I ask for a copy of the report. Later I will attempt to dissect the language.
My husband and daughter are nearly jumping for joy. Hurray. The nodes are negative. A few months ago they didn’t know I had nodes. Now we’re ecstatic they’re negative. Trying not to dampen their enthusiasm, I say, Hang on a second. Yes, this is good, but this alien, which has hopefully left the premises, had me by the throat in no time. It’s very sneaky. Complacency on my part could be an invitation for ambush. We can’t claim victory yet.
September 2000
This is radiation month. Every day, Monday to Friday. They have a great system here at the cancer clinic. Patients don’t have to think about a thing. They schedule all your appointments, including a weekly visit with the radiation oncologist. For now, my life has been taken out of my hands, and that suits me fine.
On arrival each day, I wait with the other patients, usually not for very long, until they call my name. Radiation is like an X-ray, but not really—maybe somewhere between an X-ray and atomic bomb fallout. I’m alone in a sealed room while the treatment takes place. The heavy door shuts with a bang as the technicians hustle out. Outside they turn switches and dials as they scrutinize me on the screen. These few minutes somehow manage to consume my whole day. There is no pain, but for me it’s the mental part. I worry that I might move even a millimetre and get radiated in places that shouldn’t be. I even worry about breathing too vigorously. I try not to think about what these invisible rays are doing inside my body. Breaking up remnants of bad tissue? What about the healthy stuff near by? Another cancer survivor told me that radiation is a malevolent force that continues to work away inside your body long after the treatments are over. The target area is very close to my heart.
I’ve gotten to know the technicians pretty well, under the circumstances. I see the same four in combinations of two each day. Three women and one man. They smile and ask me how I am. Good, I say. I bare my breasts to them with the same lack of modesty I felt when I gave birth to my daughter twenty-two years ago. They line me up on the table, matching ink lines on my chest with lines of light emitted from the machine or somewhere. I’m not really sure exactly what is going on since I can only look straight up at the ceiling. They repeat numbers to each other and make adjustments to the table and my body. Don’t try to help, just let us move you, they say. There is a TV screen in this room. I see my name on it. There is music in this room. Something by Tina Turner. Who, I wonder, is in charge of selecting the music to accompany a radiation treatment?
My thoughts bump into one another, fall apart and pile up again. I try to focus on the music or count the number of petals on the ornamental cherry trees in the poster on the ceiling; instead, I listen to the discordant chant of my breathing and the erratic rhythm of my heartbeat. Some days I relent and take half a milligram of a sedative on the way here. Usually my daughter Ashley comes with me, even though I’ve said I’m quite okay to drive myself. It’s nice to have the company. She’s decided not to go on a trip this summer, doesn’t think she’d have a very good time, considering … my condition. She wants to be with me, she says. Not that you need to be looked after or anything like that, she adds. She’s my child and she would make it all better for me, if she could. My husband, Nick, has taken some time off work. I think they call it compassionate leave. He accompanies me to some appointments, usually asking more questions than I would like. I always talk to him about that later. Sometimes I’m cranky. I say things like, Next time be quiet, or, If you don’t mind I’d prefer to do my own talking. Sometimes I remind him that certain questions are to be asked of certain people at certain times and I’m the only one who can determine all these things with any degree of certainty. My dad drives in with me too. We talk a lot in the car, mainly about this thing I’m going through. He never says it out loud, but I know he’s terrified that his daughter could die before him. I cannot tell him otherwise. Some things are too painful for us to talk about. This cancer business has taken over. I cry a lot, but mainly in private. Mood is black, skin is burnt. I am exhausted already and only halfway through this leg of the journey.
The Fall,
and After
Linda Harlos
I am ecstatic about my new job, which provides both intellectual challenge and emotional engagement. I adore my new husband (four years of marriage is still relatively new). After ages of low-maintenance apartment dwelling, I’ve recently come to cherish the residential mess-in-progress we now call home. For the first time I could remember, no aspect of my forty-something life desperately cried out for major repairs. Gradually, I’d been lulled into enjoying my days without the omnipresent fear of jinxing the future. In the months preceding my diagnosis, I’d catch myself muttering my novel new mantra, “Life is good.”
It was October—Breast Cancer Awareness Month—when I, along with about seventeen hundred other Canadian women, became breast-aware with a vengeance. From the beginning of the month, when I first found a small, palpable lump, to Halloween, when I committed to surgery, I was intensely breast-aware every day. In early November, a twelve-by-eleven-by-six-millimetre lump of invasive ductal carcinoma was removed from my left breast.
Lumpectomy alone is no big surgical deal, lending itself to outpatient day surgery under local anaesthetic. The big deal requiring general anesthetic is the slice under the armpit (axillary dissection) to remove lymph nodes to help gauge whether cancer has spread elsewhere in the body. Following this surgery, severed nerves and swelling meant my left arm felt numb and huge. Nerves slowly repaired themselves, replacing numbness
with tingling. The closest thing to it that I’d previously experienced was extreme sunburn, albeit never in my armpit. With the swelling, I felt like an involuntary participant in some bizarre novelty race where, instead of having my ankle tethered to another human being, I was obliged to carry a grapefruit under my arm all day. Eventually, zealous performance of the recommended boring exercises yielded results: I lost the grapefruit and the sunburn gradually receded. Within a month, although I would hardly describe things as completely normal, a trip to an indoor driving range inspired me to drag my golf clubs with me to St. Kitts over Christmas.
Taking the opportunity to dip good breast and dented in the Caribbean waters provided a fun distraction. More important, it allowed me to build up a reserve of energy and calm before undergoing my first chemotherapy treatment the day after our return. At this juncture of my adventure tour to the kingdom of the unwell, I calculated that I was probably still hanging around some foreign airport departure lounge. My journey was under way, but the rough stuff hadn’t begun yet.
Although my research somewhat prepared me, and I did escape physically unscathed, my first meeting with my oncology team was nonetheless bracing. Because my tumour was relatively small and showed no signs of having spread, I was semi-expecting to be offered “chemo lite.” However, my age and a combination of diagnostic factors pointed in the direction of a full-meal deal. For a combination of reasons (being shit scared probably the strongest), I asked a perfunctory few questions before readily acquiescing to the recommended treatment plan. To extract something resembling informed consent, they then disclosed all of the risks commonly, or rarely, associated with treatment. Some are potentially fatal in their own right (heart damage and leukemia). Others are merely unpleasant, predictable indicators of extreme toxicity.
In addition, chemotherapy offers no guarantees. What an understatement! As my oncologist conceded, there’s no guarantee that any individual patient actually requires chemotherapy, since most breast cancer patients are cured by surgery alone. There’s currently no reliable way of separating the sheep from the goats. There is also no efficacy guarantee, since the disease spreads and kills some women, despite chemotherapy. Finally, there are no guarantees which, if any, of chemo’s side effects will be experienced. It’s essentially a crapshoot—you just sign on and take your chances.
Much of what I could look forward to involved ingestion and/or elimination: appetite loss, mouth sores, nausea and/or vomiting, constipation, diarrhea. I wondered how I could suffer from both constipation and diarrhea…. Would it be one or the other, or would they occur in sequence? Curiosity notwithstanding, I didn’t actually want to know.
My husband consoled me with the reminder that no single chemotherapy treatment was likely to make me feel any worse than I had from previous recreational activities. One of my preferred forms of self-inflicted abuse over the past decade has been expeditions to high altitudes, most of them in countries not blessed with North America’s bourgeois amenities. Once, my African guide on Mount Kilimanjaro learned enough English-language synonyms for “vomit” to fill a thesaurus over the course of six memorable hours. I’ve dragged my ass out of a sleeping bag at–20°C, stumbling in the darkness, in a desperate search for a discreet out-of-the-way rock to squat behind. The relief of finding one (kudos to zip-crotch outdoor apparel!) was tempered by the grim realization that if I toppled one way I’d plummet a few thousand metres into Chile, while a fall in the opposite direction would launch me on a similar trajectory into Argentina. Thus, vomiting and diarrhea in a venue with central heating and indoor toilets and no obligation to get up the next day and keep climbing?—please!—a walk in the park in fuzzy bunny-head slippers.
The anticipated loss of my limp, thin, mousy hair wasn’t cause for vanity tears. I pre-emptively got an extremely short, low-maintenance haircut suitable for expeditions to places lacking running water and mirrors. Chemo then propelled me through stages: first, moulting animal; then, ugly duckling; and finally, bowling ball. When the occasion calls for hair, I now don my blond party head. Friends and near strangers alike assure me that I’ve traded up. My treatments have managed to rid me of that annoying middle-age shadow moustache and have temporarily made shaving legs and armpits redundant. To help me adjust to cancer’s vanity challenges, I attended a seminar that could have been called How to Tart Yourself Up When You Feel Like a Bag of Crap; I left with more free cosmetics than I’d ever owned. Luckily, I still have some eyelashes to which my free mascara can adhere.
Back in 1974, my mother had found a lump larger than mine and underwent more extensive surgery than I did. That era’s characteristic secretiveness was part of her package of fears, horrors and burdens. Few facts routinely changed hands in those days, even between family members. The sudden appearance of my mother’s wig while she was undergoing treatment led to my juvenile conclusion that her daily trips to the hospital included chemotherapy. Since we didn’t discuss it, my private guess was not confirmed. Decades later, while comparing treatment regimens, she surprised me by saying that she hadn’t undergone chemotherapy. Her wig, she belatedly assured me, was a result of nothing more dramatic than our genetically shared bad hair.
Keeping secrets costs. Isolation adds immeasurably to the sufferer’s pain, so I experienced great relief when I decided to share my lousy news with as many people as was conscionable. I invited recipients of my first widely distributed e-mail on the subject to discuss its contents with mutual friends. One caveat was that they not reverse the intended spirit by talking in hushed tones about “poor Linda.” The other was that for the time being, I preferred not to entertain horrific cancer anecdotes. (Once you break the secretiveness taboo, people’s sense of what to share can be surprisingly off the wall.)
When e-mails, telephone calls, cards, flowers, gifts and offers of food started arriving after my first mass e-mail, I was initially horrified at the prospect that someone might think I’d shamelessly and opportunistically solicited them by sharing news of my diagnosis. Once the flurry of post-surgical sympathy subsided somewhat, and the ordeal wasn’t yet over for me, my only regret was that I lacked the foresight to make my circulation list even larger.
Some difficult and disagreeable life events are inevitably solo experiences, but attending chemotherapy sessions doesn’t have to one of them. Friends accompanied me in small swarms, an assortment of amusement devices in tow. During my inaugural treatment we watched Shrek. I knew that the anti-nausea drugs were working when, without the slightest flinch, I watched the movie’s ogre tuck into a bowl of eyeballs. Between videos and the more or less constant offers of cappuccino, boxes of chocolates and homemade cookies from Tupperware containers, we didn’t even get around to playing Scrabble.
I desperately need this cacophony of company, an audience whose existence requires my bravery, even if I have to become a one-dimensional cliché of the perky little survivor to ensure their retention. I need their hugs and casseroles. Someday they may get the full story of this unsettling experience. I don’t dare tell it even to myself most days.
What, for example, do I do with the seismic rage? Since the time of my mother’s diagnosis, there has been an alarming increase in the number of young women being diagnosed with breast cancer. Inspired by researchers and charities, a cheerleading press reports “amazing cancer breakthroughs” with clockwork regularity. So why do about fifty-five hundred Canadian women still die from breast cancer annually? In the past century, there were at least as many highly publicized wars on cancer as there were major military conflagrations, with approximately the same result as the war to end all wars. Mammography, radiation and chemotherapy have barely budged breast cancer’s mortality statistics. (This information so flagrantly violates media reports implying constant progress that I had to read it in not one but two reputable sources before I could believe it.) Most of my friends and relatives, who inhabit the same pink-ribboned hope haze that I did until a few months ago, are incredulous when I tell them. If I notice furrowed
brows, wide eyes or frowning mouths, I don’t always persist. I need their ongoing support, and hope sells better than fear.
Early on, I had to counsel myself—sometimes daily, sometimes hourly—not to indulge my simmering anger. I need all my emotional energy, and my allies, to persevere through what’s still coming. I can’t afford to alienate any among my army of caregivers, for whom I am genuinely grateful and on whom I am genuinely dependent. Some sources suggest that anger can distract from recovery. Self-interest suggests that I defer any fits of indignation.
Camouflaged by my periodic fury is something even more disconcerting—immobilizing fear. I’m afraid of dying before I’ve lived “enough,” whatever that means. I’d always assumed, based on longevity in my maternal line, that “enough” included entitlement to a three-digit age. Instead I’m currently struggling with the thought that until now I’ve been waving hello to the world, while hereafter I’m likely to be waving it a slow, loving goodbye.
Despite apocryphal stories about vile side effects, the worst I’ve experienced thus far is fatigue, the onset of which is mysteriously inconsistent. Some days I’m a ball of fire; some days I’m an inert blob. But no nausea and nothing else unbearable. And with chemotherapy behind me, the worst is probably over. My surgery was both a technical and a cosmetic success, with healing progressing astonishingly well, according to an assortment of professional and non-professional viewers. The removal of the lump and surrounding margins of healthy tissue initially produced a slight divot. That said, you’d still pick the pair out of a laundry basket as a matched set. (I diligently consumed more than enough ice cream to fill the hollow in the affected breast.) It takes twelve to eighteen months for surgery scars to heal and recede into their permanent state, leaving me plenty of time to decide whether to turn any residual line into a long, thorny stem by having a rosebud tattooed to the end of it.