The biopsy is in two days.
Jan. 17, middle of the night
At 4:45 this afternoon I found out I have breast cancer. Breast cancer! That first moment on the phone when Nima told me, all the colors in the room seemed to go flat and I yelled to Steven to get on the extension. He stood in the dining room doorway and we stared at each other, just stared, as Nima talked.
She used comforting words. She told me it is a slow-growing, tiny cancer—only eight millimeters. She said lumpectomy, not mastectomy. Radiation, not chemotherapy. She used words I’m sure I will soon become very familiar with, words I’d rather not know. “Well-differentiated.” “Low-grade.” “Lower lymph node dissection.” She told me I am a very lucky woman, although I don’t feel like I am, and that this is what early detection is for.
“Goddamn it,” I was thinking. “There is no history of this in my family. I do aerobics three times a week. I eat organic broccoli.”
I called Mom immediately and tried to tell her, but my hands were shaking so badly that I couldn’t keep the phone next to my ear.
I woke up an hour ago in a sweat imagining my death and realizing I’ve made a terrible mistake: I didn’t have children. But I didn’t even want them until last month. Our lives had felt full enough with work and our love for each other. I couldn’t imagine how we’d have time or energy for a child. My thirty-fifth birthday in November and Steven’s dad’s death a week later changed our minds.
Now, at best, Nima says we should wait two years before trying to conceive, when the risk of recurrence begins to decline. By then I’ll be thirty-seven. And it’s possible we can’t have children at all. I am so sad. I want to have a baby. I want my life with Steven. I love him so much, I can’t bear that he has to go through this, too. I want him to be happy. I want us to be happy together. I want my life. I don’t want to do it over or do it differently, I just want to have the next part. I will appreciate it more. I will try to be happier. I will try to love better, live fuller. I promise.
Jan. 18
Today was a bad day. Steven suggested we go into San Francisco to a museum, but I couldn’t focus. Over lunch I kept tearing up, and he finally joked, “Oh great, people will think I’m breaking up with you.” I managed a watery smile.
Seeing kids scampering around in the museum hurt so much it made me dizzy. It’s hard on Steven, too. He said he believes I’ll be okay, but when Nima said I had to wait to have children, all the ambivalence that he’d felt on the subject evaporated. It’s like couples who discover they’re infertile: you’re finally ready, and biology says no. You can’t believe it, not in this age when we control so much of our own destinies.
But who knows what the truth is. This cancer may have been in my body for years. For some women in their thirties, breast cancer is more likely to be diagnosed when they’re pregnant, when the surge in estrogen can accelerate a previously undetected cancer. Pregnancy might’ve made this cancer more aggressive, more deadly.
Later, when we got into bed, Steven began to kiss me. I told him I was afraid he wouldn’t want to touch me anymore, that he’d see me as diseased. He kissed me more passionately and said he would never feel that way.
Jan. 20
I walk down the street staring at people, especially young women who look carefree, college students dressed in grubby jeans, hair just the right amount of greasy. I think, Do they know what might happen to their bodies? Would it have changed my life, changed my choices had I known?
I feel as if I’m living in this other world now, the world of illness. It has its benefits. People have to be nice to me. I have an excuse that gets me out of just about anything—sorry, can’t do that, I have cancer!—and Steven is going to do my share of the housework for a few months. I can be as self-absorbed as I please. But I also feel older, more hesitant. I wonder if I would be a very good mother now; I suddenly feel so conscious of peril.
Jan. 21
Saw Nima today. She said that if this cancer hasn’t spread to the lymph nodes—and that’s unlikely—my chance of recurrence is only about 10 percent over ten years. But the chances that this was cancer in the first place were less than 10 percent, so I’m not so easily reassured.
I have to make a decision: I can either have a lumpectomy followed by six and a half weeks of daily radiation treatments or a mastectomy and no radiation. At first, the answer seemed obvious: Who wants to lose a breast? A lumpectomy, even in small breasts like mine, would barely leave a dent. But then I started thinking about the long-term effects of radiation on someone my age, the potential for the treatment itself to cause cancer in ten, twenty, even thirty years.
On the other hand, a mastectomy—that reconstructed breast is not much consolation. Nima described it as a squishy ball under a scar with a tattooed aureole. How could I look at that for the rest of my life? I wish there were someone to tell me what to do. When I pushed her, Nima said, “I guess I’d choose mastectomy if it were me, but I’m a surgeon.”
Nima keeps repeating that I’m one of the lucky ones. Breast cancer rates began rising 1 percent a year in 1940 and accelerated in the eighties before leveling off in the early 1990s. Women under fifty now account for more than forty-five thousand cases annually, a quarter of the total. Most, like me, have no family history of breast cancer. The cruelest part is that since the disease tends to be the most virulent in its younger victims, few have prognoses as favorable as mine: cancer is the number-one cause of death among women in their forties. This is not a trend I want to be a part of.
Nima said her practice has shifted from mostly postmenopausal to mostly premenopausal women since she began in the early eighties, and only partly because young women prefer a female surgeon. “At first we thought the rise was because of exposure to DDT,” she said, “but women like you are too young for that. So no one knows why: pesticides, pollution, environmental estrogen released from plastics. Most tumors respond to estrogen, so earlier menarche and later childbearing might increase the risk somewhat by exposing the breasts to more monthly hormone cycles. There’s a lot of speculation but no answers.”
I asked her if there was anything I could’ve done to prevent this. “Maybe it would’ve helped if you’d had babies when you were eighteen,” she said, arching her eyebrows. “But that’s not exactly good public policy.”
Jan. 22
I’ve been a busy little research bee, calling cancer hotlines, combing the hospital’s public access library, spending hours online. I seek control by gathering information. I found pictures of reconstructed breasts on the Web: it looked as if someone had shoved one of those plastic salad bowls you get in school cafeterias under the woman’s skin and there was a huge scar across it. Other pictures, with the reconstructed nipple, looked better. Still, they were pretty upsetting.
It’s nearly impossible to find information about women in their thirties; we’re usually lumped into an all-inclusive “under fifty” category. Apparently, though, I’m one of about twelve thousand under forty who will be told she has breast cancer this year, up from 5,120 in 1970. Much of the jump is because there are simply a larger number of women in their thirties than there used to be, which means more young women who could get cancer. Whatever the case, that’s a lot of people.
No one can fully answer my questions about radiation, either. It seems to slightly increase my chances of getting cancer again someday in my other breast. Even without the radiation, because I was diagnosed so young the chances of that are now 25 percent: one of the biggest risk factors for getting breast cancer is having already had it once. Grim.
Staring at these numbers makes nothing clear. They exhaust me.
Jan. 23
Everyone has a friend about my age for me to call “who had this and is now fine.” Most of them scare the bejesus out of me. One has already got cancer again in her other breast and had a double mastectomy. Another now has ovarian cancer. The youngest ones are in the worst situations, and no one is thinking about having children. Either they ha
d them already, or they’re single, or they’ve had chemotherapy, which puts you into menopause, sometimes permanently. At least, if everything goes as expected, I won’t have to make that decision: my tumor is two millimeters shy of the size where chemo is an issue.
One woman, a friend of a friend named Candace, was a true gem. She found out she had cancer at forty-seven and had to have a mastectomy. “They took me in kicking and screaming,” she said. Candace said her reconstructed breast looks fine in clothes, even in a bathing suit. She doesn’t have a nipple yet. “You get used to it,” she said. “You miss sensation. You miss the feeling of cloth against your skin. I wouldn’t say that it isn’t horrible, but it’s not the worst thing. It’s not like it’s your face.”
Her neighbor, also a breast cancer survivor, had a lumpectomy and radiation. “In a way, I suppose I’m jealous,” Candace said. “Psychologically, she could move on much more easily than I can.” That got to me. Which choice will make it easier for me to continue with my life? There’s a risk with radiation, but it’s one I think I’ll take. I’m going to have the lumpectomy, although I’m nervous about it. I almost asked Candace if I could come over and see her breast, but I figured if she didn’t offer, it would be rude.
I remember a picture I saw somewhere of a woman who’d had a mastectomy and then had a beautiful vine tattooed along the scar. I never understood those body-piercing, tattooing kids before, but maybe it’s about trying to turn something you feel is mutilated and ugly into something you can love again.
Tomorrow I’m going to New York. I am going to spend a few days reporting for a book I’m writing on life choices among women from their twenties through their mid-forties—can you believe it?—and trying to live my own previous life as much as possible. Then Steven will come join me for a final weekend before the surgery.
Jan. 24
I am the person whose life is officially not worth saving. According to today’s paper, a panel convened by the National Institutes of Health has declined to recommend mammograms for women in their forties because they don’t save enough lives. I know I wouldn’t have bothered with a mammogram if I’d read this. If I hadn’t had that test, if I had waited until I found a lump myself, my prognosis would have been far worse. I certainly would have needed chemotherapy. I might have even found the cancer while pregnant, when treatment is much more difficult. Either way, death would have been a greater possibility.
I am sitting in the airport waiting for my flight to New York. It was impossibly hard to leave Steven. I cried when he dropped me off. I feel superstitious about him, that if I’m with him nothing bad can happen.
Another article in the paper alarmed me even more than the one about the mammography panel. I didn’t even clip it, it made me so queasy. It talked about a gene called BRCA1, which, when it is mutant, is linked to breast and ovarian cancers. Apparently it has a higher mutation rate among Ashkenazi Jews—and I am one—especially if there was already reproductive cancer in the family. My aunt died of ovarian cancer, and although my doctors have said that is not especially significant, it haunts me.
I have already had one ovary and part of the second removed because of cysts that Nima assured me, have nothing to do with the cancer. Still, I want my ovary gone. I want to have children. I want to have children right now and then get that sucker cut out.
I feel so defective, so unable to trust my body. It is like losing faith in a God whose power you were sure of, even if you had the teensiest doubts.
Last night I lay awake and wondered about what defines us as female. If it is, indeed, biology, then what am I becoming? I have only 80 percent of a single ovary and may, in a few years, decide to remove that. I will only have part of my breasts and may, some day, lose those. Will I be less female? Will I be less of a woman?
Jan. 31
I couldn’t stand it anymore yesterday and I pulled the tape off the incision from the biopsy. It’s longer than I thought—about an inch and a half—and prominent on the top of my breast. It’s true, if this hadn’t turned up anything, I would’ve been really ticked about the big scar. On the other hand, I wouldn’t have cancer.
Over lunch today, an old friend asked me in all seriousness whether I thought I had a “cancer personality.” What would that be? Someone who holds anger in, she said. She’s been on antidepressants for over a year, and I have the cancer personality?
Maybe deep down the reason it bothers me so much when people say I should change my diet or get rid of stress is that I am afraid I really did do something wrong, that this could be a punishment for . . . what? Being on the Pill? Waiting to have children? Independence?
It doesn’t help that there is a distinct undercurrent of accusation in many of the books supposedly promoting “healing.” I can’t believe what I’ve found skimming bestsellers in the health sections of bookstores. Bernie Siegel writes, “There are no incurable diseases, only incurable people.” Louise Hay claims that cancer returns when a person doesn’t make the necessary “mental changes” to cure it. Those are tidy ideas, placing the onus of the illness on the ill and letting the healthy off the hook.
Still, I doubt I gave myself cancer because I’m reluctant to tell one of my best friends she’s an idiot.
Feb. 1
The pressure to have a positive attitude is intense. Steven came to town on Thursday. We went to the Guggenheim and I stood in front of a Picasso, a study of a woman’s head in grays, blacks, and whites. Her face is broken up and put together in a way that is beautiful but frightening and awful. I thought, That is exactly how I feel.
Steven says I should allow myself to be depressed. But I feel that there are those who expect me to be upbeat, and I expect it of myself. And then, even though I know it’s ridiculous, I fear that if I give in to my sorrow—over being ill, over possibly not having a child, over the loss of my youth and descent into a feeling of fragility that ought to be reserved for the very old—that I will cause my cancer to spread.
I am glad Steven is here, but it has brought me back to the disease. For most of the week I was able to ignore it, to throw myself into work. But Steven’s presence forces me to confront my life. I ask him how he can love me if, because of me, we can’t have children, if our lives cannot be as we wanted them to be. He holds me and says that what we have is enough. I know he is not a person who says what he doesn’t mean, but I wonder if somewhere, deep in his soul, he feels I’ve failed him. I have failed him. I have failed us.
Sex feels out of the question. I cannot feel pleasure. I want more than ever to express how deeply I feel for Steven, how married I feel to him, but I can’t: my body betrays me again by refusing to respond. I am sure this is a normal reaction. That doesn’t help one bit. I want to go home.
Feb. 5
Surgery tomorrow. Nima called to see how I was doing. Mom and Dad just got in from Minneapolis, and they seem more nervous than I am. We were all supposed to go out for a “last supper,” but Steven’s office has been robbed and he has to wait for the police. Tensions are running high: Mom is continually on the verge of tears and Dad has barely said a word. We eat our roast chicken in a state of forced cheerfulness.
Feb. 6
Sitting in the hospital room before the lumpectomy. An elderly man on the other side of the curtain is listening to Rush Limbaugh on the radio. Really loudly. Steven goes to ask him politely to turn the thing down. I know this is a mistake, sending my big, brawny Asian husband to reason with a Dittohead. The guy yells, “Well, it’s too damned bad because I’m not turning it down.” We retaliate by turning on the TV, cranking up Barney until both programs become a blur of background noise. This ought to scare the cancer away.
In the operating room, Nima and I briefly discussed the mammography panel again. She rolled her eyes. “I see too many young women in here,” she said. “A lot of my patients are younger than I am. It’s overwhelming.”
This is one of those areas, Nima said, where people of goodwill disagree. “Maybe it doesn’t find eve
ry tumor and maybe there are more biopsies,” she said, “but to me, finding early breast cancer is more important than that. Tumors found early do better. Look at you. If you had waited six months, things would’ve been different. If you’d waited until you’d found a lump, we wouldn’t be looking at the same prognosis.”
I had left Mom crying in the waiting room, and she cried again when I was wheeled out, smiling. I know this is hard on her. Steven said that as soon as the door to surgery swung shut she fell apart. “It should be me going in there,” she said.
I was discharged within an hour. I’m not in a lot of pain: the spot under my arm where she removed some lymph nodes to biopsy hurts more than the lumpectomy. I can take the dressing off in two days. I wonder what my breast looks like under all this gauze. How bad is it? I’m anxious about getting The Call about the lymph nodes. I know the news should be good, but there is that small chance the cancer has spread there. I thought the news on my original biopsy would be good, too.
Feb. 7
The nodes are negative!
I am so relieved, even though it was the expected result. I didn’t realize how tense I’ve been these last few weeks. Like a bad episode of thirtysomething. (Oh, God, am I Nancy? I would hate being Nancy!)
Nima called while Mom and I were out on a walk, something I shouldn’t have done, and that—along with making dozens of phone calls to my brothers, Steven’s sisters, his mom, and all my friends to tell them about the nodes, as well as checking in on my parents every two minutes all day and not napping—caused me to pass out over our celebratory dinner. The books all said to get back to normal routines as soon as possible after surgery—I guess they didn’t mean twelve hours later.
I made an appointment with an acupuncturist. Acupuncture and Chinese medicine are supposed to ease the fatigue that can go along with radiation and, over the long term, help prevent recurrence. I start next week.
Don't Call Me Princess Page 11
