I should have been suspicious when the nurse popped the Baby Animals in the Wild video into the VCR. We were alone in the Swedish Comprehensive Breast Center waiting room. She watched me watching tiger babies roll in the tall grass. She was wringing her hands.
She had just given me my very first mammogram, and then she had assured me that visiting the radiologist after a mammogram was routine. I had made the mammogram appointment under duress. A friend's wife insisted that I get tested; she stood in the doorway of my office until I made the call.
"You have little white spots on your pictures," the nurse said, explaining why we were sitting there until the radiologist had time to see me. "But I'm sure that the radiologist will say the spots are nothing. Traces of deodorant probably." In the ultrasound, the spots turned out to be blocked milk ducts. The stern radiologist told me they would need surgical attention.
"It's not a convenient time for this," I snapped at her, although I wasn't sure what "this" exactly entailed yet. We didn't use the word cancer. I jumped off the table, still wearing the cowboy boots I'd refused to remove, and added, "And I won't be coming back." She talked me out of my John Wayne imitation by walking me to the surgery department to make an appointment.
Two weeks later I was back at Swedish for the first biopsy of my left breast. The same radiologist asked if I would mind if she tried out a new machine on me. Two medical-equipment salesladies instructed her on how to use the high-tech tool. She kept doing it wrong. The needle kept entering my left breast at the wrong angle, so they'd have to start over, each time extracting a new tissue sample. By the end, my breast looked like an excavation site. The one bright point of the experience was my girlfriend, who stayed in the room the whole time. She sang Elton John's "Someone Saved My Life Tonight" out of tune until she got queasy and almost fainted.
At that point in my life, I was living in a kind of cancer sandwich. While I was under the biopsy needle, my older brother was in France trying to find a miracle cure to save his 3-year-old son, Jack, who basically had cancer from when he was 12 weeks old. Jack had been through several old-school surgeries, an experimental laser-knife surgery, and an MRI every six weeks. When Jack's illness finally exhausted all medical possibilities, my brother took him abroad to dip him in the waters of Lourdes and to see a renegade Parisian oncologist, who advised my brother to feed Jack mainly sardines for a month.
I had also just finished caring for a friend in my house while she went through brain surgery for a suspected cancerous tumor. By "just finished," I mean: There were 24 hours between when that friend left my house and when I walked into Swedish for my mammogram appointment. I had years of experience sitting in hospital waiting rooms contemplating other people's mortality. Brushing up against my own mortality, however, was like descending into the undercity tunnels of a much less familiar country.
Cancer takes you right to a cliff, and you have to choose quickly. Something. Jump. Or get a ride on the helicopter that's now sending a ladder down for you to climb up to relative safety. The established medical protocol pulls you in one direction, and you can go that way, but who knows what's going to happen when the helicopter ascends into a thunderstorm. If you stay on the mountainside, you're just as screwed. After you have kicked all the rocks off the cliff edge, torn out all the shrubbery, and cursed the lousy genes of your ancestors or your own bad luck, you still have the same choice to make. There's the helicopter (which you just missed) or there's jumping (by which you decide, for example, to take some concoction made from the root of a tree in Bolivia and stop returning your doctor's calls). Or else you stand there, immobile—an asshole—telling everyone to fuck off, your eyes squeezed shut. I have done each of those three things at different times.
When you're diagnosed with cancer, you enter a medical industry fortified with miles of empirical texts and scientific proofs. It is also an industry that involves great sums of money. (Jack's medical costs, for example, topped two million dollars.) I would advise anyone to follow the standard cancer treatment protocol if she was facing cancer, whether she was at great risk or not, but I'd also want her to understand that we live in a vacuum of medical knowledge. Twenty years from now it will seem barbaric that we have relied so heavily on radiation and chemotherapy. Likewise, surgeons don't perform radical mastectomies, removing chest muscles with the tissue, as often as they did 15 years ago. And there is no actual guarantee that taking toxic chemicals is more effective than, say, going on a pure macrobiotic diet and meditating seven hours a day.
Once I realized that I couldn't escape my fate, I spent hours scouring the internet. I went to support groups. I read magazines and books. I discovered that there are 500 more cases per year of breast cancer here in Washington than in any other state, a statistic that's remained steady for a few years, although it's seldom mentioned in the press. Even epidemiologists can't explain the phenomenon. The best folk theory seems to be the lack of light in Washington and the consequent lack of vitamin D.
Every women's magazine that I "borrowed" from the YMCA spouted the same heroic story about a housewife or a rock star—Melissa Etheridge, for one—who was diagnosed with breast cancer and then miraculously defied death by following the advice of her doctors. The stories were as flat and predictable as evangelical tracts. Our culture has decided to invest in a collective illusion that there is a war on cancer—evidenced by the popular use of the term "survivor"—and that we are winning that war. I don't take any comfort in thinking of myself as a survivor because it contains the implied truth that people who die are victims, and that's way too simplistic. The war metaphor and the word "survivor" are pretty clearly psychological constructs we use to keep cancer at a safe distance. It's a way to market cancer to ourselves, to repackage the disease to make it less shadowy.
What I craved were stories that reflected my own experience of rage, disbelief, and orneriness; I wanted women to be confessing their ambiguous and complex reactions. I wanted Melissa Etheridge to say, "Yeah, chemo sucked, but among the lousy choices I had at the time, it seemed like the most practical choice." I certainly didn't want famous people or friends to ride their bikes, or run long distances, or dance all night in hiphop marathons and then send cards saying they helped fight or find a cure for cancer. My Christian sister sent me a donation card as a gift last year. I tore it up, and then I burned it. It made me uncomfortable, like I was being pinned again to the term "survivor," as if this were now part of my identity. Cancer isn't who I am. It's just a disease I had.
And although I love knowing that there is money going toward research to help us evolve toward the next, more sophisticated era of cancer treatment, I also want to be sure that we are leaving room for and supporting authentic, complicated human responses to the disease. I'm having a hard time believing that John Edwards's wife, Elizabeth, is really okay with her husband continuing his run for the presidency. She has been diagnosed with stage 4 breast cancer that metastasized to her bones. She appears to be in shock. She looks terrified in publicity photos, and everything she says seems blank and disembodied, like she's reading from a pamphlet. I would rather know what she is really feeling, and even what it feels like to announce to the world that her body and the quality of her life and the specter of her death are less important than her husband's weak campaign.
Another folk legend about breast cancer is that it's the disease of women who tend to give too much, who take on more burdens than they can bear.
I'm not advocating that everyone needs to publicly fall apart or rage or expose their deepest emotions when faced with cancer. I just want there to be more complex public dialogue about the subject and some acknowledgment that the diagnostic and treatment process isn't watertight. And there needs to be more humor. Humor helps people confront what scares or repulses them.
I don't want to be disingenuous about this. There's nothing funny about cancer. It's one of the most terrifying diagnoses you, or someone you care about, can be given. And I can't say I was laughing throughout the entire exploratory surgery and diagnostic process. But there is in me a need to laugh about difficult experiences as a way of managing them. There is an element of absurdity in the experience of being diagnosed with cancer, and "making light" is an Irish Catholic trait. I read about it in a multicultural psychology textbook. The author explained that the Irish are particularly adept at minimizing the impact of what's most morbid. If that doesn't help, they get drunk. If liquor fails them, they run away. It's appealing to imagine that there's always a new town where no one has heard my tragic story.
I always thought my first surgery would be a face-lift. It's a family tradition. I'm third generation Californian, and although I made self-deprecating jokes about my vanity, I wasn't joking about cosmetic surgery. My most beloved uncle underwent his fourth face-lift several years before he was diagnosed with Alzheimer's disease. His home-care nurse said, "Such a pity at 50," when she met him, failing to notice the 12 waves of wrinkles gathered just below the tip of his chin. He was 75.
I would have followed my uncle's path to eternal youth if I had never received a cancer diagnosis. Suddenly, I was not the least bit interested in surgery. I wanted nothing more than to age, and to show signs of aging as I aged, and to keep all my body parts unaltered. After going through months of tests, prodding, two biopsies, and what seemed like a hundred mammograms, I shied away from even the hint of plastic surgery that is the boob job many women get after a mastectomy. Only one boob would have been replaced, but even that was an unattractive prospect. The surgery called for inserting a balloon behind my left pectoral major muscle and gradually inflating that balloon to my double-A cup size, then filling that space with silicone or papier-mâché or some other unnatural material.
So I have ended up with an asymmetrical body; I have a flat chest on the left side. My right breast is still there, but it's so small that sometimes people don't even notice that it's the only one.
For a while I held on to the illusion that I was only going to lose the basic shape of my breast. I thought I could keep my nipple. I assumed that the surgeon would leave it there as if she were just doing a gender reassignment surgery. In an even more magical moment, I imagined she would wire it back to my skin, using all the sensory neurons that didn't get removed during the mastectomy.
When she told me that the cancer had actually spread to the nipple too, and that there was no way to save it, I felt cornered. There was nothing to do but surrender to the absurdity, and hope that my friends would leave me a few of my own Percocets.
The day before the mastectomy, I was obsessively preoccupied with important, dramatic tasks. I spent half the day at the UW surgery center where my ex-girlfriend was undergoing an emergency hysterectomy. The other half of the day I spent fighting with my ex-ex, the Elton John–singing girlfriend whom I had begged to come back when the whole cancer process started. And then I made her life hell. On top of it all, it was my birthday.
In the middle of a morbid dinner, my mood took its Irish shift. A friend and I decided it would be fun to draw a map on my body so the surgeon could find her way to the correct spot. We had plans for arrows, roads, and a big fat encircled X on the right breast so she wouldn't cut that one off too. We also considered writing her a letter in the form of a circle that would end at the punctuation of my nipple.
It was lucky that we didn't draw the map after all, because on the morning of my surgery my body was a kind of canvas for medical assistants. Most of the presurgery procedures and rituals involved marking dots and arrows, in different colors, all over my chest, including a big red dot on the breast that needed to be cut and an X on the right-hand survivor.
All I remember about the surgery itself is having both arms stretched out on transverse tables so that I was lying in the classic Christ-on-the-cross position. I made a string of bad Catholic jokes, quoting randomly from the Easter passion mass: phrases like "Lord, oh Lord, why have you forsaken me?" I rambled about Pontius Pilate and the Virgin and the stations of the cross as I was being injected with an anesthetic. The surgeon shushed me. And then the drugs hit.
Five days after my surgery, the world was all cliffs again when my brother called to tell me that Jack had died. I flew to the funeral in California. It was a slow and blurry string of days, but there was also this weird undercurrent of dark humor on the fringes of the funeral and wake.
It started at the airport. I was a mess—crying and exhausted. I boarded the plane at the same time as the families with babies and the ladies in wheelchairs. I couldn't use my left arm to lift my suitcase into the luggage compartment above my seat, so I asked this tiny, middle-aged stewardess for help. I told her I'd just had major surgery. She glared at me. "I'm sorry, I can't," she said. "It's not in my contract."
At first I thought she was kidding. She was short. Maybe she couldn't reach that high. In retrospect, I wished I had said something clever. Instead I just let out this big sigh with "Jesus fucking Christ" in the center of it. She grabbed the bag and shoved it into the compartment. The rest of the flight she glared at me as if the waterworks and the weak arm were an act. Once I arrived in California, the clerk at the rental-car counter said, "Where you headed?" and I said, "Funeral." He leased me a red mustang for $5 a day.
At the reception that followed my nephew's rosary, one of my mother's friends followed me around the room offering to show me her chest. She had undergone a double mastectomy two years prior. "You've got to get that breast replaced. You'll love it. Your husband will love it, too," she assured me.
After the ceremonies and the wake were finished, my brother and I went to a high-school football game. His other son was out playing on the field. My brother and I stood in the cold and made lost-breast jokes. He was drunk and exponentially wrecked with grief. We laughed the way we used to laugh before we'd ever had losses that drinking and blame couldn't fix. We pretended I was going to enter and win a wet T-shirt contest, or that I was going to get plastic surgery after all but have the new breast placed in the middle of my forehead. It seemed funny at the time. Or I'd slur, "Shit, Paul, I lost my boob. Have you seen it?"
That's how we handled it at least for one night, my brother and I drunk and awkwardly pacing the cliff until our jokes got thin. After that I had a fantasy of us buying a 20-year-old Jeep Cherokee and heading out east, on one of those California roads crossed with earthquake scars. We'd drive across the Carrizo Plain listening to Steely Dan. Maybe we'd find ourselves in a bar or a ditch seven miles from Visalia. Someone would come through the warp of the day heat to listen. We'd tell stories. I'd show my long scar. He'd show the photograph of Jack, legs crossed, with two eyes in two worlds, swinging in the summer hammock.
It has been 2 years since the surgery, but it seems like 10. I get scared when I hear about someone else's cancer coming back, and although I'm healthy now, I still feel nauseous when I hear the word survivor.