"No more shame"

When you're used to being in control,
it's hard not to feel that you're somehow to
blame for having cancer.

By Oni Faida Lampley

this article is republished from Self.com

 

Brooklyn, summer 1996. I was 37. "I've got some good news and some bad news for you," the surgeon who'd removed the lump in my left breast said to me. I said, "Bad news first!" But he had his own script.

"The good news is that you are healing well from the biopsy. The bad news is..." You know what came next. Malignant.

My first thought: You talkin' to me? I'm too busy to be sick. I'm a compulsively exercising, breast-feeding, breadwinning, black mother of two! An SBW, strong black woman. I've read all the "Your Breasts and You" pamphlets, and I don't fit the profile. I have no risk factors, no family history of breast cancer. And not one of the women in my pamphlets is black.

Then: All right! I'll admit it: I'm a lapsed vegetarian. But I still scramble, bake or blend tofu to make it taste like something other than prechewed gum. Damn! I should have had more cheap wine and barbecue pork rinds!

The doctor was going on about possible lymph node involvement, lumpectomy or mastectomy, and he obviously thought I could hear him because I was nodding and taking notes. But in my head it sounded like, "You are going to die a horribly painful death. Now. Right here in my office, before I get through talking!" I imagined a New Yorker cartoon. Panel one: Doctor tells patient, "You have cancer." Panel two: Patient drops dead of a heart attack.

My husband, Tommy, and I drove home from the hospital in silence, and I whipped myself into a frenzy of self-flagellation. (Always better than feeling scared, right?) This is my fault. I didn't eat right, didn't exercise enough. I had too many negative thoughts. I felt guilty and ashamed. I thought I was in control of my life, but I must have missed a beat and allowed myself to get cancer.

The next morning, I woke yearning to see the faces of black women who'd survived cancer. Growing up in Oklahoma City in the '70s, I never knew anyone black who admitted she'd had it. Surely there was someone, but people didn't talk about those things. I went to the library and saw Celebrating Life by Sylvia Dunnavant sticking out on the shelf. Inside were images of black survivors. Their stories filled my spiritual arsenal. But I found I kept turning to the women who were sicker than me when they were diagnosed. I'm finding comfort in seeing people worse off than me. That's wrong. Even in this, I judged myself.

I don't recall how big my lump was, but it had no discrete margins, meaning it had spread to my lymph nodes, stage II. I asked for a mastectomy. Part of me felt that the more it hurt, the greater my odds of redemption. Besides, I wanted it over, so I could go to work: I'm an actress, and I'd just gotten my first movie role in which I had more than one line, so I begged and squealed, and ultimately the doctors did my surgery and reconstruction right away so I could go to Toronto to film. A month later, I began chemotherapy at Memorial Sloan-Kettering Cancer Center in New York City.

In the months after my surgery, I was blessed with the generosity of friends. I also felt an instant intimacy with strangers at the Evelyn H. Lauder Breast Center, my support group and in surgeons' waiting rooms. We'd grab hands like grade school friends and run into restrooms, and they'd lift their blouses to play show-and-tell. "Here. See? I had such and such done, and I'm fine now. You'll be OK, too," they'd reassure me. Tommy made sure our sons, Ade and Olu (9 months and 6 when I was diagnosed), were busy with activities they loved. My mother was a constant comfort. My doctors, vigilant and compassionate, prescribed medications that mitigated chemo's side effects and adjusted my treatment schedule to accommodate my work.

It all went well—until it didn't. Three years later, in 1999, I discovered a pea-sized nodule on my mastectomy scar. Although I'd been informed that reoccurrence was a possibility, I couldn't believe it. I gave the beast a whole breast! Why wouldn't it leave me alone? Why was I such a failure at "beating this thing"? I'd done all I was supposed to do through conventional medicine, and I'd been to naturopaths, homeopaths, the odd psychopath. ("You should drink your own pee!" one quack in Mexico told me.) I was the poster girl for not letting my disease hold me back. Sure, I was profoundly tired, but I was used to that. Women in my family ate tired for breakfast. In fact, we skipped breakfast, after we'd fixed it for everybody else, because who has time to eat? I had no idea how to take care of my own emotional needs.

We radiated the nodule and changed my medication, and I kept on going. I've lost track of how many procedures I've had and the drugs I've tried—which, for me, is progress. I used to fetishize every appointment. Each time my doctors tried something new to eradicate my cancer, I took a breath and sank under water, flailing. Then I'd bob back up and will my life to resume. Eventually, I learned that this rhythm of sinking and resurfacing was my life, my new norm, and I stopped trying to hold my breath.

Some of this acceptance came on the set of a short-lived TV show in March 2004. I'd had a headache and felt woozy for a week. I thought perhaps I'd had a chemo reaction, on top of keeping long hours. But it was only a five-day shoot, and I wanted to work.

About 20 minutes after the director announced, "It's a wrap!" I went back to my trailer and had a seizure that threw me to the floor. I was experiencing what I'd feared almost as much as dying: I was utterly vulnerable in public, vomiting, weeping, terrified. A beautiful actress I barely knew midwifed on the way to the hospital. She assured me that as a mother of four, she couldn't be disgusted by anything I did. "Let your body do it," she intoned. I did. Waves of shame rose and subsided. I relinquished control.

In the ER, a CAT scan revealed a few small brain tumors that had caused my seizure. I needed radiation. The eight-week recovery that followed forced me to sit down, shut up and stay home. I was weak, bald, swollen-faced and fragile, incapable of doing anything for the first time in my adult life. If I accomplished nothing, I thought, what right had I to survive? It felt like the end.
My body gave me no choice but to sit with those thoughts. No getting up and getting busy when I got scared. No shouting slogans ("I'm happy, healthy, whole and complete!") at myself. My brain refused to host the usual riot of self-punishing thoughts I'd mistaken for ambition, such as, You're shit at the end of the day if you haven't done 13 things.

Perhaps the hardest part of this enforced stillness was my fear that those who loved me would be disappointed if I ceased to be the do-it-all survivor. And then I felt ashamed, once again: There was a "right" way of having cancer, and I was doing it wrong. No one blamed me, but I blamed myself. Over time, I let that go, too. I prayed, slept, cried and (don't tell anybody) felt sorry for myself, and—lo and behold, the roof didn't fall in! I wasn't instantly struck down! I washed one damn dish at a time, and when I was tired, I learned to stop. If making the bed took an hour and a half, so be it.

Today, my brain tumors are gone, but others keep popping up in my body. When it first became clear that my cancer was chronic, I went to the edge of desperation and stayed there. It seemed that I'd feel sick and terrified every day until I died. But that wasn't true. As I stopped grasping for control, I saw that every blip on the screen, every spike in my tumor markers was not an emergency. I learned to let my anxiety ride.

I'm currently in a clinical trial for a new drug, and I feel well. My younger child is 11, and we shoot baskets before school. I'm not very good at it, but neither of us cares; when I'm too tired, I tell him so. I wrote a play about breast cancer, Tough Titty, which premiered at the Williamstown Theatre Festival in Massachusetts in 2005 and was a finalist for a prestigious award. I have ups and I have downs, too. But a sense of shame no longer rules me. I had to make this feeling manageable because the guilt and self-recriminations were just as damaging as cancer. My illness may be chronic, but at last I can say my shame is in remission.

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