Don't Call Me Princess

by Peggy Orenstein

  Feb. 9

  I removed the big white bandages on my chest and armpit today. I was apprehensive, but I stared into the mirror as they came off. Steven came in and stood behind me. I considered asking him to leave, feeling I needed to face my new body alone, but it turned out to be difficult to remove the adhesive from my skin.

  There was my breast in the mirror. It has a large, raw wound covered by surgical tape and the surrounding area is blue, the color of veins showing through pale skin. But it appears to be the same size and shape as before. Steven leaned over and gently kissed the scar, a sweet welcome home. It is all I want.

  Feb. 10

  I read an interesting tidbit in Dr. Susan Love’s Breast Book: women who participated in sports in high school and college have lower rates of breast cancer than other women. Physical activity reduces their estrogen levels. So as a public health policy, to lower breast cancer rates she suggests pouring money into girls’ athletics.

  Feb. 13

  Last night Steven and I went to see Mare Winningham’s band, tried to have a normal evening out. But we ended up coming home early and having a meltdown. I suppose it had to happen. Steven has been distracted, and I fretted that he no longer found me attractive, that he was going to dump me for a younger, healthier, more fertile woman who wasn’t obsessed with cancer. I asked what was wrong and he said he was just feeling sad. I asked why and he said he felt that bad things just kept on happening. Now, he has a right to feel that way: his father and one of his best friends died last year. His work has been difficult lately, his office was robbed, and his wife has cancer. But I read this as further confirmation of my fears and flipped. Somehow, things just escalated from there.

  In the best of times, I hate it when we fight. But last night I panicked, because I tend to feel our fights in my chest. I thought: Oh God, what if this is bringing the cancer back? What if fighting with Steven is why I got sick in the first place?

  Maybe I will look into cancer support groups.

  Feb. 14

  This morning I got up and took some vitamin C and E, selenium, my various potions from the acupuncturist, and now I’m drinking green tea at my computer. With these amulets I ward off evil. They are the modern-day versions of saying kinehora and spitting three times.

  I am seeing the acupuncturist once a week. He shoots six small, fine needles through a tube into my ankles and calves and three more as a bonus into my left arm to ease the pain in my tendon from typing all day. He also gave me supplements to boost my immune system.

  Does it all help? I don’t know. I feel rested when I leave his office, and my typing arm feels great. I believe and I don’t believe, but I do it.

  I have several friends who have said that they, too, feel they inhabit a parallel universe of the ill. One has Crohn’s disease, another is depressive, a third is having fertility problems. The issues are surprisingly similar. We develop weird obsessions and counter them with talismans: mantras from 12-step programs, or advice dispensed from shrinks, or controlled diets. Our bodies feel like petulant, spoiled children who must be spoken to carefully to avoid a tantrum.

  Meanwhile, I’ve become obsessed with what I eat. Food that isn’t good for me doesn’t seem like food. Yesterday I baked some organic sweet potatoes and ate them like apples for snacks. On the other hand, I have managed to force down a couple of the chocolates Dad sent me for Valentine’s Day.

  Feb. 15

  Steven and I continue to be testy with one another. I want him to be overjoyed—delirious—that the nodes are clear, but he’s just not. He says that he assumed all along I was going to be fine, given what Nima said. He says if he’d let himself think about anything worse, he would’ve become so depressed that he couldn’t function, he couldn’t take care of me.

  I want him to react right along with me, but the truth is, I only want him to do it on my terms. As shameful as it is to say, I hate it when Steven’s depressed: it scares me. I look to him to be emotionally what he is physically—rock solid. When he says he’s upset that we can’t start trying to have a child this spring, I want to shove the sentiment down his throat. I don’t like his having feelings that hurt me.

  Meanwhile, he’s angry that I’m acting as if this is just about me. “If something happens to you, Peg, it happens to both of us,” he said. “If you can’t have a child, we both can’t have a child. If you die”—he began to cry—“if you die, my life ends, too. You have to think about us together, not just you.”

  Feb. 18

  My oncologist, Ari Baron, looks like a teenager. But once I got over my shock (and determined his competence), we got along famously. In his opinion, there’s no reason to wait two years to get pregnant with my good prognosis—I should just go ahead whenever I feel healthy again after the radiation. It turns out the research on pregnancy after breast cancer is outrageously meager: since the 1930s there have been data on fewer than six hundred patients. The first large-scale study on the subject is going to be started this summer. But Ari says there’s no danger to the fetus once the radiation is over, and based on what’s known, pregnancy doesn’t appear to affect my survival. In other words, if I’m not going to die anyway, it shouldn’t kill me. He thinks it doesn’t make sense to wait when you balance my chance of recurrence against my age and the psychological value of moving on with my life. “You don’t want to feel like you’re sick,” he said. “That’s what cancer is about: realizing how fragile life is, but because you’re aware of that, enjoying life, seizing it with both hands. And that includes, for you, having a baby.

  “So go, be fruitful and multiply.”

  March 5

  Tonight was my first radiation session. I went into a room hung with a biohazard warning that says caution: high radiation zone, lay on my back under a machine that looks like a small spaceship, removed the left side of my hospital gown, raised my arm over my head, and held a handle while the technician manipulated me into place. I know I’m supposed to pretend it’s normal to lie with my breast exposed in front of a bunch of fully clothed strangers while they draw on me with a Sharpie, but, hey, call me uptight, I found it a little distressing. Then they left the room—they don’t want to get nuked—and watched me on a TV monitor.

  The treatment itself is short and painless. Radiation isn’t like chemotherapy. The main side effects are fatigue and skin irritation. I won’t lose my hair. Steven came with me for my inaugural dose and stood against the wall while they prepped me. I couldn’t see him, because I’m not supposed to move, but I could feel that he was upset. When the technician came back into the room for a second to adjust something, he ran in after her. “Forgot to kiss you,” he mumbled.

  I stared at the ceiling. They have removed some of the panels and installed a triptych photograph of a park in springtime with a lake, groves of tulips, and budding trees. I willed myself into the picture as hard as I could and felt my body trembling. I really don’t want this poison shot into me. The machine whirred for maybe thirty seconds. When it stopped, they moved it to another spot. A minute of whirring and it was over. Only thirty-two more treatments to go.

  March 6

  I found a support group for women under forty with breast cancer. Tonight was my first meeting. There were eleven of us and a social worker. The women were in all stages of treatment. I sat between Jeanne, whose silver-streaked blond hair is just growing back from chemotherapy, and Natalie, who, since her diagnosis, has become an activist.

  Some of the women wore scarves around bald heads, making them look Hasidic. Some had mastectomies, and I found myself sneaking peeks at their chests to see if I could tell. (I couldn’t.) Most had small children, but a few, like me, were thinking about the safety of pregnancy. When I told my story, I felt a wave of relief. Everyone in the room had been through what I’ve been through—at least—and understood.

  Only one person, Sue-Jane, a Chinese American woman with a very good prognosis, was younger than I. “When I go in for radiation, everyone in the waiting room is dying o
f curiosity,” she told me. “They look down when I tell them. They say, ‘You have breast cancer and you’re thirty?’” She shrugged. “I say, ‘It happens.’”

  The main topic of discussion was whether to close the group to new members. There are sixteen women registered in all. That’s just too many—there was a lot of warmth in the room but not much focus. The trouble is, there are new women calling to inquire about the group virtually every week, and where would they go? None of us would want to be locked out, least of all me, the newest member.

  Afterward, I called a friend in New York, who asked me if it was scary being around women whose prognoses were worse than mine. “I just don’t think of you as having the same thing they have,” she said.

  March 31

  The American Cancer Society has announced that it’s recommending annual mammograms for women in their forties. The National Cancer Institute is expected to do the same later this week. Everyone is calling to tell me, as if it is a personal victory. And I suppose it is, although I’m suspicious that endorsing mammograms has become the cause du jour in Congress. It’s an easy way to look righteous to female voters without having to do anything, like finance research on a more precise detection system, more effective treatment, or the connection between pesticides and cancer. I really was one of the lucky ones: only about half the cancers among the women in my support group were visible on mammograms.

  I am tired of information. An epidemiologist from the American Cancer Society sent me statistics on how much more likely women whose cancers are diagnosed in their thirties are to get other cancers—breast, ovarian, lung, leukemia—than older women. Someone else sent me a new Sloan-Kettering report that says all the studies on the safety of pregnancy after breast cancer are flawed. I’m beginning to know too much.

  April 3

  There were only a few people at the support group tonight. Someone had her daughter’s soccer practice; someone else didn’t feel well, and everyone else—maybe the weather was just too good. There are nights when life is more important than cancer. But the smaller group was, in fact, better. There was less eyeing the clock to make sure everyone got a chance to talk.

  One of the women, Sue, had lumpectomies in both breasts a little over a year ago, when she was thirty-eight. Last week she felt pea-size lumps underneath the scars and she’s afraid that it’s back. “Maybe it’s nothing,” she said, smiling nervously. “But it’s opened the door again.” Opened the door just days after she and her boyfriend had decided to try to have a baby. Both Susan’s mother and grandmother died of breast cancer. I asked if she worried about passing it along to a daughter.

  “I do,” she said. “But is that a reason not to have children? I’m not sorry my mother was alive. I’m not sorry I’m alive.

  “It’s good to be able to come here and talk. My friends want to tell me I’ll be fine. They don’t get it. I don’t want to die, but I have to consider it. It’s possible. That’s what feels so unfair dealing with this at our age. I said to my friend, ‘I need to know if I have a child that you’ll take care of it if I go.’ She said, ‘That goes without saying.’ But it doesn’t for me. I want to live. I’m planning my future. But it does not go without saying.”

  Natalie, who had a mastectomy at thirty-six, is struggling, too. She has one child and would like to have more, but has decided that the risk to her health is too great. Last week a pregnant friend tried to convince her to change her mind. “She kept saying, ‘Everything’s a risk,’” Natalie said. “‘You could get hit by a bus tomorrow.’”

  We groaned. “I hate when people say that,” I said.

  “Yeah,” Natalie agreed. “You could get hit by a bus, but they’re all up on the curb and I’m already standing in the road.

  “I’m not saying it’s not a tragedy to get cancer at sixty,” she continued, “but this is different. I don’t think about it in terms of me. I think in terms of my son, the markers of his life: if I can get him through high school, into a good college. I don’t want to die when he’s five. To me, sixty sounds pretty good.”

  I felt sadder and sadder. When Jeanne said her pet dog, who was ten years old and blind, had wandered out of her yard and been hit by a car, I burst into tears.

  “People are always asking me how I am in that significant way,” she said. “You know, ‘How are you?’ When I say I’m feeling terrible because my dog died, they roll their eyes and say, ‘Is that all?’ But you know, it’s a loss. I had that dog before I had my kids.”

  April 15

  Steven and I finally had that normal night out I’d hoped for two months ago. We went back to the same club where I’d been so miserable before, this time to hear an old friend, George Kahumoku Jr., play Hawaiian slack-key guitar. Last time we saw him was on Big Island, a few days before we were married.

  Steven put his arm around me. “We’ve had a good five years since then,” he said as I leaned against his shoulder. I can’t say I didn’t think about cancer during George’s set—it’s still in my mind every second—but for the first time since January, it faded into the background.

  April 16

  How do you tell a child that you have cancer? Most of the women in my support group are mothers of young children; usually they found their tumors shortly after giving birth. Jeanne’s was diagnosed when her son was ten months old and her daughter was five. “I ended up saying, ‘Mommy’s sick under her arm,’” she said, “‘and she takes very special medicine.’ My daughter thinks it’s all better now. I don’t know what I’ll tell her if there’s a recurrence.”

  Natalie lends out a picture book, Sammy’s Mommy Has Cancer. She says her son wants to be a doctor and a builder when he grows up. “He has this elaborate plan to build special beds in the hospital so that mommies with one breast can hold their babies close without having to pick them up,” she told me. “Why does a four-year-old have to deal with this?”

  Susan talks not from the perspective of a mother but from that of a daughter. “My mom didn’t want us to grow up worrying about cancer,” she said. “She taught us how to handle the fear. I feel I can pass that on. And I have the same hope she did: that either my kids won’t get this or there will be better screening and treatment by the time they get to the age when it might happen.”

  May 21

  I went out hiking and came back covered with poison oak. I couldn’t be happier: it’s such a normal affliction. I’m working my way back down the crisis ladder—first cancer, then poison oak, maybe next I’ll get a really bad hangnail.

  Someone in my support group said she’s been “visiting her terror” a lot lately, as if it were a geographical place. A month after completing radiation, I find myself visiting my terror, too, at unexpected moments: during a busy workday, for instance, or over dinner with friends. My stomach suddenly clenches and I think, I’m a thirty-five-year-old who just had cancer. It seems simultaneously unreal and the most real thing there is.

  Keeping up with the news on breast cancer is tough; things change so quickly. Last week, a study found that the BRCA1 mutant gene, the one that makes breast and possibly ovarian cancer nearly inevitable, is neither as common nor as definitive as was thought. I was so relieved. When I think of the frequent-flier miles I racked up visiting my terror—and its twin city, confusion—over that one! Then, yesterday, it turned out the women who do have to worry about it are those with both early-onset breast cancer and ovarian cancer in their families. I was right back on that plane. But that’s part of this difficult journey, from screening to treatment and beyond: making life-and-death decisions based on information that is ever-shifting and contradictory. Then not looking back.

  Slowly, though, this disease is becoming a part of my life, rather than its center. I don’t believe that I will die of breast cancer, at least not anytime soon. I don’t know whether we’ll have a child, although I hope we do. I don’t know anything for sure anymore, and I guess I’m learning to live with that. It’s as if I fell off a cliff on January 17. Maybe
I still haven’t landed.

  The Problem with Pink

  Readers seemed surprised that I was willing to retract something I’d written fifteen years earlier, but as someone whose life may depend on the future of breast cancer research, it was important to me to get it right. I was so frustrated by pink ribbon groups that continued to funnel millions of dollars into promoting the idea that annual screening should begin at age forty while ignoring the mounting evidence that it did not actually extend the lives of those with cancer. What’s more, universal screening was causing significant harm to healthy women. A cover story in the New York Times Magazine, I knew, would have an impact on this debate like nothing else and had the potential to shift the national conversation. That was both a daunting responsibility and an exciting prospect. Still, although I considered writing the story for years, I never seemed to get around to it. I didn’t relish the idea of returning to Cancerland, not even as a reporter. Then, my own disease returned, and, as it did with the first diagnosis, my material chose me. I reported and wrote this piece in the months following my mastectomy; it ran in April 2013.

  I used to believe that a mammogram saved my life. I even wrote that in the pages of this magazine. It was 1996, and I had just turned thirty-five when my doctor sent me for an initial screening—a relatively common practice at the time—that would serve as a baseline when I began annual mammograms at forty. I had no family history of breast cancer, no particular risk factors for the disease.

  So when the radiologist found an odd, bicycle-spoke-like pattern on the film—not even a lump—and sent me for a biopsy, I wasn’t worried. After all, who got breast cancer at thirty-five?

  It turns out, I did. Recalling the fear, confusion, anger, and grief of that time is still painful. My only solace was that the system worked precisely as it should: the mammogram caught my tumor early, and I was treated with a lumpectomy and six weeks of radiation; I was going to survive.