by Lynn Darling
Given the size of the tumor, Swistel said, he would not operate right away. He suggested I have chemotherapy first in the hopes of shrinking the thing and thereby salvaging the chance of a lumpectomy. I left his office mildly encouraged.
Bonnie Reichman, the oncologist Swistel recommended, took a different tack. Part of it was a difference in personalities: Dr. Swistel discussed treatment options with a reassuring offhandedness, as if we were discussing the game plan for next week’s office party, but then he could afford to: he did most of his work while his patient was unconscious. Which is not to belittle his reputation—he has been a pioneer in painstaking surgical methods that preserve as much of a patient’s normal appearance as possible; others in the field describe him as an artist. But Dr. Reichman shepherded her patients through the nerve-racking, debilitating hairpin turns of a treatment that can last every day for years. She was the one who had to tell a woman her future, when there was no future left.
Yes, she said, chemo might shrink the tumor. It might not. More likely I would have six rounds of chemo, surgery, probably mastectomy, radiation, and possibly more chemo. In addition there would be a year of targeted therapy delivered intravenously. And after that, five years of hormone therapy, which could turn bones to glass, increase weight and weaken the heart, and set the stage for other cancers. Or not. I was one of the lucky ones, she said without any irony: the cancer had been caught at a relatively early stage, I was otherwise healthy, and there was no sign of metastasis.
I knew she was right, but I walked out stunned and, I’m afraid, in tears. The next few days were taken up with the usual cancer treadmill—a raft of tests to make sure my physical self could survive the treatment, and then a round of shopping for hats and a wig, to make sure my ego would. The wigs all looked like roadkill; it was impossible to imagine wearing any of them. Then I drove back to Vermont, with what looked like a dead muskrat in my suitcase, and a small mountain of pamphlets about everything from what to eat during chemotherapy to how to pencil in eyebrows when I had none. Coming down the driveway I stopped and sat in the car and listened to the wind in the trees for a long, long time. Everything looked the same. And nothing was.
In 1971, a lightning-struck airplane fell into the Peruvian jungle. One of the passengers was a seventeen-year-old girl. Disobeying all of the standard advice for being stranded in such a place, she did not stay put and wait for rescue, as the other surviving passengers did. Instead, she started walking, still wearing her white confirmation dress and a pair of high heels.
Eleven days later, having made her way through some of the densest jungle on earth, she arrived at an empty hut on the banks of a river, and collapsed. She was starving, dehydrated, and covered in leeches and worms erupting from eggs laid under her skin. She was found by three hunters who had happened by and took her back to civilization.
The other surviving passengers had stayed where they were, awaiting rescue, which is exactly what any survival guide would have advised. Besides, they were convinced they would never make it out of the jungle alive. And none of them did. The girl had taken one look at the jungle canopy and decided no plane would ever see them, which in fact was the case.
The difference came down to personality in the end. The teenager, like most of her adolescent tribe, wasn’t big on patience and probably shared their inflated notions of her own immortality. The others followed the rules that maturity had taught them. There was no wrong choice. It was a crapshoot—the outcome of any disaster is a crapshoot—all you can control are the decisions you make, what eccentric combination of logic, intuition, personality, and pragmatism leads you to a kind of hope.
In the pink-ribbony dream world of breast cancer, the jungle canopy is composed of information. The Internet is thick with it, the reliable and the utterly specious, the frightening and the inspiring. The books are plentiful as well, but it’s the words I looked up breast cancer on the Web and … that drive the cancer specialists crazy. Dr. Reichman gave me the name of one site she considered reliable, and urged me to stick to that. Of course I ignored her. I bought nearly every book I could find, from the encyclopedias of doom to the unctuous purveyors of treacly optimism. I spent hundreds of hours on the net, unable to stop myself, reading everything I could find.
The obvious disconnect between the grim statistics, the unequivocal fact that there was no cure for this disease, and the pie-eyed optimism of the Web sites drove me nuts. The pink ribbon brigades never met a side effect they couldn’t minimize and yet insisted on reminding you that your life would never, ever be the same. I felt condescended to and intensely frustrated, and all the encouraging words made me more afraid—was the unadorned reality of breast cancer really that scary?
I tried to prepare myself for whatever it was the cheerleaders weren’t telling me. I googled images of bald women and graphic pictures of mastectomies and breast reconstructions—the good, the bad, and the grotesque. I read blogs by the brave and the terrified, discussion boards on topics ranging from hair loss to horror stories of insensitive husbands, evil insurance companies, and side effects of Gothic dimensions. I read arcane scientific journals that I tried to translate from languages I didn’t even speak.
Cancer porn is what Catherine Lord called this sick fascination with every detail and every disaster story in The Summer of Her Baldness, my favorite breast cancer memoir. It’s a perfect description; the stuff is lurid, often amateurish, and utterly hypnotic.
There are as many ways of coping with breast cancer as there are patients, and there is no preferred method as far as survival goes. Total denial seems to work as well as the diligent industry of those who spend hours imagining golden armies of healthy cells battling evil malignant ones. Some women watch their diets. Others live on chocolate milk shakes.
But I was convinced that if I just kept reading I would eventually find the thing that was missing, the piece of information that would give me the traction I was lacking.
My need for information was the legacy no doubt of too many years as a journalist, the sense that there was never such a thing as too many facts. Somewhere out there was the one statistic or piece of research that would provide a landmark by which to steer a course. Without it, I cartwheeled between shock and denial and depression.
I found it finally on a Web site called, simply enough, Cancer Monthly. In the section devoted to breast cancer I read:
Nearly half of all patients who are treated for apparently localized breast cancer develop metastatic disease. And half of all initial cancer recurrences occur more than five years after initial therapy. Although a very small number of these patients can enjoy long remissions when treated with combinations of systemic and local therapy, most eventually succumb to their cancer.
There it was: the elephant in the room, the thing everyone danced around and no one wanted to talk about. Is it true? I asked Dr. Reichman. She gave me the standard answer to questions concerning mortality rates. Would it make any difference if it was?
It’s a good question, because the answer is nearly always no—the patient is going to do whatever she can to get better and live longer, and recognizing that fact can help quell the anxiety at least a little.
That was my answer as well. But I still needed to know.
Yes, Reichman said, it was true more or less, and after that I calmed down. I felt more in control, if only of the facts. For me, there was some peace in seeing spelled out in print what the word incurable makes fairly clear: most women with breast cancer will eventually die of it if something else doesn’t get them first, whether that something is a car wreck or old age.
The experts will tell you that survival in the wilderness or even in the shopping mall, if that’s where you happen to be lost, depends on optimism and pragmatism, on a healthy dose of hope and the ability to read the altered circumstances you confront with some degree of accuracy. But then there are the cases, like the Peruvian plane crash, where about all you have is an attitude, not the odds, but a way of coping wi
th the odds: to face death walking out of the jungle or wait for it to come to you. I think that whatever understanding I gained about direction, about orienting myself in an unfamiliar world, began in earnest then, when I learned how to face the present without blinking and decide for myself how I would cope.
Chemo would not be so bad if it were not for the insects, such ugly things, with their sharp mandibles and terrible teeth and pincers that tunnel so deeply, relentlessly into the brain. I had not known that insects could be made of metal. The beetles are big and black and they dig their way into the nightmare place; I can’t remember in which part of the brain that’s located. Medulla oblongata? I should have studied more. If only there weren’t so many of them, if only their bodies didn’t rub against one another, making that terrible scritch, screech, scraping sound, like the lawn mower when I haven’t oiled its blades. Why won’t they stop? If they did, then I could sleep through these endless hours while delicate insect legs skitter across the soft tissues of my brain and insect talons work away. I have been on this sofa, unable to move, for hours. I look at the clock. How long has it been since last I looked? Five minutes.
The third day of chemo was the worst, a gray shadowy pit of time full of nightmares and fever dreams. Then the days gradually got better until the third week, when I would feel nearly normal, when it was time to do it again.
I had the chemo in Dr. Reichman’s office in Midtown Manhattan. Having seen other chemotherapy delivery rooms when Lee was ill, I knew how lucky I was. Dr. Reichman had set up hers more along the lines of a cozy small-town beauty parlor than a grim factory for pouring lethal chemicals into fragile human containers.
There were only three chairs in what I came to think of as the chemo salon, leather or at least leatherlike recliners of a size and magnitude that demanded either a huge helmeted hair dryer hovering above or a basin for pedicures placed at the foot. On one side of each chair stood a small table for water bottles and other necessities and on the other a wheeled metal dispenser from which the bags of chemicals could be suspended while they dripped through plastic tubing into a needle taped securely to a forearm.
A well-stocked folder of takeout menus was in reach next to a pile of magazines and extra blankets and pillows, as well as DVDs of movies that could be popped into laptop computers. Tucked into one corner of the room was a kitchenette with a small refrigerator filled with bottles of water, juice, and diet soft drinks, a sink, and, on the counter, a bowl of healthy low-calorie snacks—granola bars, hundred-calorie cookie bags, dried fruit.
There were a few chairs placed for friends and family as well, but most women came alone. The chemo took about four to six hours to deliver, depending on the particular cocktail prescribed, so there was time to talk, and over the months we got to know one another a little. The patients varied in age and income but also in how many times they had had cancer and how advanced it was. First-timers were probably the majority, and most of us had fairly good prognoses, but there were patients who were back with a recurrence, or a metastasis.
There were lawyers, and housewives, and grandmothers; there was a woman in her seventies who was a psychoanalyst by day and a cabaret singer by night, who had chemo four times a week and would do so for the rest of her life: the cancer had spread to nearly every organ in her body. She would spend the time going over musical scores with her husband/manager for that evening’s performance. We were all in awe of her.
Those of us going through our first bout with cancer tended to be a chatty bunch, especially at the beginning of the session—some of us arrived slightly hyper from the steroids taken the night before to keep the nausea at bay. We spent a lot of time discussing surgical options and side effects with the gusto of a convention of car mechanics or tax experts or any group possessed of arcane knowledge of passionate interest only to themselves. But after the intravenous Benadryl began to take effect, we were all pretty stoned, and the chemo salon took on the relaxed, slightly louche atmosphere of a high-class opium den. Sometimes, in the background, we could hear, as if in a dream, Dr. Reichman’s low, patiently insistent voice trying to convince a frightened woman to continue treatment despite the side effects, or explaining the options left to someone for whom they had contracted to very few.
I grew to love these women, even the ones who couldn’t seem to move a muscle to help themselves, especially the ones who couldn’t, who needed more blankets and more water and more attention than anyone else; their anxiety spoke for all of us. They tended to be the older ones, the last remnant of the generation that had depended on husbands and fathers to make everything better; they had never had to cope by themselves. It was much harder to know what to say to the younger women, because of the monstrous unfairness of it, women who hadn’t even had time to have children or had two small ones at home—and Jane, our oncological nurse, said the patients were getting younger all the time.
I would drive back to Castle Dismal a day or two after the infusion. On the bad days I would rest in bed and stare out the big picture window in the bedroom at the bare trees, fixing in particular on a big birch that stood out in its white bare perfection from the dun-colored branches of the others, staring at it as if the strong sturdy pillar of its beauty could somehow anchor me, if only I held on tight.
That spring was my first mud season in Vermont. Some mornings after it had rained all night, I woke up to murky waters rising, puddles pooling, torrents reaching up to Henry’s flanks when he ran outside to see what was going on. The water rushed down the road from the woods, taking out most of the driveway. The floor and the furniture were patterned in muddy paw prints, and my clothes were caked with dirt. I was fascinated by this wet and rushing violent change, the muck and ooze, the motion of it, water and road and wind and rain, the loud smacking, streaming, sucking, crashing, moving, falling, melting mass of it. If you had to be in the middle of a catastrophe, then I was in the right place, because spring in New England is a catastrophic season.
One night, a couple of weeks after the first infusion, I absently ran a hand through my hair and a few strands came away in my fingers.
Such an odd sensation, the slight tug as the scalp released its hold on the roots, an instant of realization of what is happening and then the visual evidence, there in your hand. I had tried to prepare for the hair loss—watching Internet videos on creative head scarf tying, buying yards of fabrics in ridiculous colors, practicing with the free makeup given out by the American Cancer Society at one of its “Look Good Feel Better” sessions, in which volunteers demonstrate the use of foundation and blush to look less sick. But I don’t think I ever believed it would happen.
When it did, I headed to the yarn shop for a pattern and some wool to make myself a hat. Something that wouldn’t make me look too cancery, I said to Karen, the young woman working the desk that day. But the women of Whippletree were way ahead of me: they had designed a hat—the Darling Beret, they called it—and Karen had knitted it in a soft mauve cotton with a couple of darker stripes around the brim. It was beautiful and perfect and I had no words for their kindness.
After the first round I had waited nervously for the first sign of the coming change, tugging nervously at my head about fifty times a day. I had read the discussion boards about how traumatic it was to lose your hair, as well as the psychological studies, in which many breast cancer patients claimed that losing their hair was much more upsetting than losing their breast.
But while it was strange when it actually happened, my reaction, past the first little rush of fear, was relief: Now it begins, I thought. Now there is something I can actually do, beyond waiting in dread.
It was late at night. I went upstairs to the bathroom, put a towel around my shoulders, and in the clinical glare of the fluorescent light, I cut my hair as close to the scalp as I could with a pair of scissors. I had read somewhere that it was better to get rid of your hair once it began to fall out, much better than waking up every morning with the evidence all over the pillow.
&
nbsp; So I cut it off in hanks, laying the fistfuls of brown hair on the linoleum counter. At that point, with the sheet wrapped around my shoulders and my hair sticking out in short cropped patches, I looked so comical, I had to laugh. I took a lot of pictures on my phone. Then I shaved off what was left as close to the scalp as I could. The actual doing of it was not as sad or frightening as I had expected; I was more curious than anything else and weirdly detached. I didn’t achieve the perfectly finished billiard ball look I had in mind because I couldn’t get close enough to my scalp without cutting myself—I was left with a sort of kiwi fruit fuzz. I took more pictures of the person in the mirror. She had a nicely shaped head, I thought, but she was no one I knew.
The hair had fallen all over the sink and the bathroom floor. I gathered it up and put it in a resealable plastic bag. I couldn’t throw it out. I would need it, wouldn’t I, after the treatment was over? I knew that was nuts, but still I pressed the seal on the bag and placed it in one of the bathroom cabinet drawers.
I took more pictures. I took a picture of my bruised and battered breast. Then I tried on the wig and took a picture of that. It looked weird. I waited to be upset, but I wasn’t really—the experience was so bizarre, so beyond anything I could have imagined, that I was more fascinated than anything else.
The hair would grow back, but in other ways, I would come out of this permanently altered, my bones and heart weakened by the drugs and five years of hormone deprivation, the shape of my body different—perhaps drastically so, depending on what surgery I had—and fatter, if the statistics on the percentage of women who gained weight during treatment were to be believed. Even the color and texture of my hair might come in differently, gray most likely, or white (like Gandalf, I liked to tell myself, in The Lord of the Rings). And while all of that sounded pretty scary, wasn’t it just a sped-up version of the changes that getting older would inevitably bring? Would I be changed in other ways as well? Would the fear and the anxiety and the confrontation with mortality ingrain themselves so deeply that they would become a permanent part of me?
