Blood Matters

by Masha Gessen

  I remembered reading an article by the philosopher Colin McGinn, published in the magazine Lingua Franca about a dozen years before I learned of Dor Yeshorim. McGinn proposed that the mind-body problem, which had occupied generations of philosophers, was unsolvable. In McGinn’s view, our inability to understand how our physical selves produced consciousness was integral to the existence of consciousness. What stayed with me was McGinn’s description of waking up in the middle of the night to the revelation that the thing he had been trying to understand was unknowable. The discovery relieved him—and, he believed, other philosophers—of the burden of having to learn or invent a solution. He was ecstatic.

  I would have been, too. I had spent months falling asleep with a heaviness in my breasts and a fog in my mind. I cycled. In the days immediately following my quarterly visits to the breast specialist, I felt reassured that she had felt nothing suspicious in my breasts. Then the anxiety would build. The frightening facts were all there: My breasts were dense; my breasts were lumpy; my breasts hurt; the kind of cancer I risked developing was so aggressive that a virtually invisible, unpalpable speck could turn into a life-threatening tumor between exams. I was too anxious to perform self-exams, which, new studies warned me, were ineffectual anyway (my mother had found her tumor herself, but she found it too late). A month or six weeks after one of my breast exams, the amount of premenstrual breast pain I felt would grow unbearable. Once I scheduled an emergency breast appointment because I felt a huge lump in my left breast. “Your left breast is larger than your right,” my doctor said. “I know this. Why don’t you?” Because I could no longer look at them. In essence, my breasts had already become cancerous: My body had turned against me. All I could do now was declare war on it myself.

  The economist had told me I should have both a mastectomy and an oophorectomy. The psychologist had told me breasts were essential to my identity as a woman but I could get over losing them. The genetic counselor had told me to sacrifice the ovaries and, she implied, keep the breasts. I had read hundreds of papers, conducted dozens of interviews, attended one conference, and spent countless gray mornings staring at the pine-paneled ceiling at our dacha. I learned every crack and knot in the wood over our bed, and I hated every single one of them.

  Karen, the woman who had organized the cancer-family reunion I attended in Green Bay, Wisconsin, told me she had asked her breast surgeon what he would tell his wife to do if she had the mutation. “That will be the easiest question I will have to answer today,” Karen remembered the surgeon saying. “I would tell her to have a double-sided mastectomy and a hysterectomy with an oophorectomy, and I would tell her to get it done tomorrow.” That, Karen said, “was one-half of my decision.” The other half came from talking to her cousin who had already had the surgery. None of that was directly related to studying probabilities and weighing risks: Karen chose to get her information from intermediaries, much as Dor Yehorim’s clients do.

  When my cousin Natasha tested positive for the mutation in Jerusalem, she found herself scheduled for ovarian surgery before she had a chance to consider the idea, much less get used to it. Once she thought about it, she jumped off the conveyor belt, joining what may be a minority of Israeli women who choose not to have surgery following a positive BRCA mutation result. “I think it is my karmic challenge,” Natasha told me when I visited her in Jerusalem a couple of months after her test. We stood on the side of a mountain road, the wind filling our hair with sand: My two children and Natasha’s two grandchildren were in the car, and we had to talk about this quickly, before getting in. “If I cut off some part of me that may develop cancer, the cancer will come through in a different organ. I have to confront it with my own spiritual force.” I was in no position to argue with her: She had outlived my mother by four years and her own mother by a year, which, in our mutant world, seemed significant. Natasha hugged me and said softly, “But you do whatever you need to do.”

  I needed to do something. I did not believe in karmic challenges that could be defeated with the strength of one’s spirit. I did not even really believe in a God who might have chosen to deprive me of the 187th allele in my BRCA1 gene. I believed in action, and, most of all, I believed in knowledge. But I would have given all my breasts and ovaries to wake up one night, like Colin McGinn, with the understanding that this knowledge was not meant to be held by me. In the absence of such a revelation, all I could do was reduce the amount of knowledge that drove me crazy. In my mangled internal math, the 40 percent risk of ovarian cancer was knowledge I could live with, and the 87 percent risk of breast cancer was not.

  Chapter 9

  The Operation

  I SPENT THE NIGHT of August 22, 2005, in front of the computer—editing someone else’s story for a magazine where I worked—and chatting by instant messenger to make sure the time until I left for the hospital was filled with words. That I would have my surgery on the anniversary of my mother’s death was a fateful scheduling accident: The breast surgeon who would do the mastectomy and the two plastic surgeons who would do the reconstruction bounced the days of August back and forth among them until finally they informed me that August 22 was my only option. I very nearly canceled the surgery several times before finally deciding that assigning the worst days of my life to a single date was perhaps not such a bad idea; a friend suggested that ultimately I might just choose to cross the date off the calendar altogether.

  At seven in the morning, exactly thirteen years after my mother last woke up and not ten miles away, I would go to sleep—to wake up with a different body, one that would be divorced from her legacy. While I slept, a breast surgeon, a lovely young woman with the ingratiating manner of a Midwestern saleswoman, would cut off my nipples and make slits under my arms to scoop out all the breast tissue. At the same time, a plastic surgeon would cut open my belly and scoop all the fat tissue he could find there, to scoot it up into the empty space under the skin that used to cover my breasts (the “breast envelope,” as they call it). A third surgeon would perforate the muscle tissue to get at the blood vessels that would need to be pulled up to my chest to feed the transplanted fat. I would wake up with small nipple-less breasts that should look and feel real to the touch but that would probably never have any sensation. A few months later, once everything had healed and settled, I would be able to have decorative nipples constructed and tattooed to look more or less like the real thing.

  I had turned out to be a coward on the nipple issue. American breast surgeons generally insist that the nipples must be removed in a mastectomy—because it is impossible to scrape them clean of breast tissue the way it can be done with the thicker skin of the “envelope.” Some European surgeons, as well as a few Americans, have, however, been performing what are called subcutaneous mastectomies, which preserve both the nipples and breast sensation. But I could find only a couple of studies analyzing the safety of this procedure, and what they said was that there was not enough information to know whether a subcutaneous mastectomy was as effective in preventing cancer as what surgeons call “a simple mastectomy.” In fact, the studies suggested it might not be: The few women who went on to develop cancer following a preventive mastectomy had all had the subcutaneous kind. And I knew it would be an uphill battle, trying to convince the breast surgeon to spare the nipples. I also knew I could probably win—unfair as it might be, I could trump most objections with the argument that I was writing a book about my experience and my research—but I could never quite convince myself. At best, I would feel I had been reckless. At worst, I would come to fear and resent my nipples the way I had come to fear and resent my breasts in my year of mammograms and biopsies. So I decided to sacrifice them.

  The operation lasted a staggering thirteen and a half hours. I woke up in the recovery room—a space the size of half a football field, designed to sustain a dozen simultaneous crises. Everything in it was makeshift: beds that were wheeled in from the operating rooms, and the bodies in them, held together with string and tape;
movable monitors, X-ray machines on wheels, curtains that created that hospital sort of falsified privacy. I spent the night diving in and out of the anesthetic darkness. Twice a nurse woke me up rudely by screaming, “Do not forget to breathe!” I had apparently forgotten. I remember resenting her intervention.

  By morning, the thickest of the anesthesia had worn off and I was able to take in my surroundings. A man in his fifties was wheeled in to a space diagonally across from me, woke up, and began to stare me down flirtatiously. Then a nurse came, and he started hitting on her with lines so hokey I had never thought anyone might actually say them: “That’s a pretty name. Are you married? Good.” Then he discovered he was missing his right leg.

  I felt like I was in a bad movie. A fat woman directly across from me woke up in extreme pain and howled and laid into the nurses, who made disdainful comments. I had known this about nurses from earlier experiences of giving birth and visiting friends in American hospitals: Nurses tend to arrange patients according to a hierarchy of pain tolerance. It is an entirely unreasonable value system: For the most part, people can do nothing about how and when they experience pain. As it happens, though, I have an extremely high pain threshold and a high sensitivity to painkillers: One milligram of morphine knocks me into space. That makes me a virtual star with medical personnel. So now I was playing the strong, silent, stoic type. I put on my headphones, turned on the CD (is there another song quite as underhandedly dark as Leonard Cohen’s “Everybody Knows”?), pressed the button that sent another milligram of morphine through my veins, and sank into despair.

  I would spend the next week in this state. I had miscalculated—or misimagined—something. I had asked the doctor whether the recovery would be like that from a cesarean section, and he had confirmed that it would be. I had had a difficult time giving birth—fifty-six hours of labor followed by emergency surgery—so it seemed like a fair comparison. I remembered being in pain the first few days, but more than that, I remembered the recovery being not only easy but automatic: It required no conscious effort. I expected something similar this time.

  I had been very, very wrong. This time I woke up in a strange body—not my own badly battered one, as after the cesarean. The front of my torso had been cut up and rearranged and was now fragile beyond imagination. A sign at the top of my chest, in black Magic Marker (the permanent kind, as I discovered later over a series of showers), said, “No pressure here.” This was where the microsurgeon had fused two blood vessels together. I joked I would have the sign permanently tattooed, but it terrified me. Then there were my so-called breasts, two small, badly bruised mounds. Every hour a nurse would come by to see if they were still alive: She would touch them to see if they were warm and listen for blood flow using a tiny Doppler—the tool usually used to listen to the heartbeat of a baby in the womb. Then there was the rest of me, bruised, bloody, and absolutely numb. Plastic tubes with pear-shaped vessels at the bottom—drains to absorb excess fluid—came out of my underarms and my abdomen: four in all. The breast surgeon talked me into looking at this horror once: Now I realized her saleswoman’s voice was more like that of a guardian angel, and I clutched her hand while I looked down. I acknowledged that the reconstruction was masterful, if you discounted the bruising. And then I could not bring myself to look at myself for over a week.

  Every day I woke up with a sense of pervasive regret. What had I done? Physically, I felt like I would never bounce back. Psychologically, I felt disgusted.

  This was not the least bit like the period following childbirth. My body was not regenerating. It was not producing milk, it was not rejoicing in the presence of a baby. All it was doing, it seemed, was recoiling in horror. I did all the things a good patient was supposed to do: I got up on Day Two, I took a lap around the hallway on Day Three, and I was discharged on Day Four. But every time I had to shower, it took me hours to get ready and then finally I would ask Svenya to help, because I was terrified of myself, so I needed to shower with my eyes shut. I began to think that there was reason to surgeons’ refusals to operate on young women. I even thought my own counterargument—that if these same twenty-something women had come looking for a sex change, they would have gotten the surgery, chased by hormones—was shortsighted. The women who wanted their breasts cut off because they believed they were men would experience the change as natural, as releasing their true bodies into the world. What I was experiencing was pure violence.

  Three of the drains came out after a week. I began doing exercises to regain the ability to raise my arms: For now I could barely get them to shoulder height. I also resumed working. The pathology results came back. They were a few days later than expected, and I had grown nervous: I had talked to enough women who had had what they thought were prophylactic mastectomies, only to have tumors discovered following the surgery—and to have to go on to chemotherapy. But I did hope the pathology would reveal just a single cancer cell—or rather, noninvasive, very early-stage cancer—so I would not have to undergo chemotherapy but would still know I had done the right thing. No such luck: The pathology results were clean. What had held them up, my breast surgeon explained, was a bunch of benign granulomas—small growths that are usually associated with a disease called sarcoidosis, of which I had no other symptoms. I could hear the surgeon shrug over the phone: Whatever that disease was, it was not her turf. Privately, I thought I knew exactly what caused it: fear. I had spent so much time imagining what might be growing in my breasts that, ultimately, something grew.

  A few days later I bought some clothes: Because of the scar that went all the way across my lower abdomen, I would have to wear hip-hugging trousers for the foreseeable future. The last drain came out after two weeks. I got behind the wheel. The next day, I went to visit an old friend, and we spent the evening talking about love and not talking about surgery or cancer. I had to ask her husband to back the car out of the driveway: I still could not turn my torso. But on the way home, I felt in awe of my own body, which had somehow leaped over the violence I had done to it and was back to serving me so soon. When I got home, I finally looked at myself.

  I was still yellow and black in places, and the inches upon inches of stitching were still red and raised. But, for a bruised and bloody torso, it did not look half bad. I liked the small breasts and the taut stomach. They were unfamiliar, but I could learn to live with them. Most of the front of me still felt leaden—numb and, it seemed, hard. I was soft to the touch, but the touch echoed so unpleasantly—like pins and needles amplified—that it was clear it would take a long time to learn to be touched. For now, I felt like I was carrying something like a shield on my front, and this seemed fitting enough.

  The next day, I put on my new clothes. I looked in the mirror: ridiculously low-riding jeans and a T-shirt stretched over a preternaturally flat stomach and small braless breasts. It looked like a teenager’s body with a thirty-eight-year-old face pasted on top. In an odd way, this had been precisely the point. I laughed.

  PART 3

  THE FUTURE

  Chapter 10

  The Future the Old-Fashioned Way

  “SHE IS JUST an ordinary-looking baby, isn’t she?” the pediatrician asked, looking at the blanketed lump placed in a plastic cradle beneath a lamp. “Except that they shaved her head to put IVs in her at one time or another,” he continued. “She has this colostomy. That’s just a bowel hanging out there, with some stools coming out, and they’ll just close it up eventually and rehook it back up to the rectum.” Dr. Holmes Morton poked his short fingers at the baby. She looked good to him.

  Marlene was one month old. She and her twin sister, Arlene, had both tested positive for maple syrup disease, also known as maple syrup urine disease (MSUD), so named because the urine of babies born with this recessive disorder smells like maple syrup. In fact, if the disease is allowed to progress unchecked, everything smells of maple syrup—not only the child’s urine but also the earwax and, indeed, the child’s whole room. And starting at about four days
of age, the child will suffer irreversible damage to the brain and the central nervous system. The disorder is an enzyme deficiency that leads to a buildup of certain kinds of amino acids and a deficit of other kinds in the brain and elsewhere. A technical term is “metabolic derangement.” This deranged state of the body can lead to disability or death resulting from cerebral edema or other equally horrifying causes. Most places in the world, where only something like 1 in 185,000 babies is born with the disorder, the child is doomed. In Lancaster County, Pennsylvania, where roughly 1 in 200 babies born to Old Order Mennonites is affected with the disease, babies are tested and put on a diet—a specially designed formula that will be their only food for the rest of their lives—and proceed to develop and grow normally, or as normally as any person with a serious chronic condition requiring constant attention and intermittent medical care. Morton is the man who made sure newborn screening for maple syrup disease was instituted in Pennsylvania, helped design the formula for feeding the affected babies (and children and adults), and proceeded to treat them all at his Clinic for Special Children in Strasburg, Pennsylvania. No one had ever treated adults with maple syrup disease, because affected individuals did not generally live to become adults, so Morton and the one other doctor at his clinic, despite being pediatricians, treated the adults too.

  Morton looked like a country doctor should look. He was not tall, and his slightly stooped posture made him seem even shorter. He wore a gray tweed jacket, a blue oxford button-down shirt with noticeably frayed cuffs, and a bow tie. He talked a lot, displaying a boundless willingness to discuss all relevant topics with all comers, which caused him to take detours—to a hospital waiting room to collect a family’s medical history, down to the hospital basement to study a series of MRI shots of the brain of a girl with a mysterious seizure condition—and the detours in turn caused him to run habitually late. On the first day I spent with him, he had a single snack, in the late afternoon: two saltine crackers snatched from a packet behind the registration desk at his clinic.