"Living in the Lightning: A Cancer Journal"

One woman learns how to manage her fear.


Natalie Robins
June 28, 1999 8:00PM (UTC)

November 27, 1995

Late this afternoon I was diagnosed with cancer. I learned that I had a form of non-Hodgkin's lymphoma called "malt," for "mucosa-associated lymphoid tissue." My oncologist, J. Gregory Mears, M.D., said that mine "was not a bad story," because my tumors were "indolent," slow-growing. Not a bad story? Doesn't just about everyone know that non-Hodgkin's lymphoma is incurable? I have incurable cancer. Jackie Kennedy Onassis recently died from the same disease. What was good about any of this? Dr. Mears's words were hard to take in, but my husband, Christopher, and I strained to listen carefully.

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There are two basic types of lymphoma, cancers of the body's immune network: Hodgkin's and non-Hodgkin's. Cell structure determines which is which. The microscope had shown mine to be one of 10 forms of non-Hodgkin's lymphoma. Mine was low grade. When I brought up Jackie Onassis, Dr. Mears said that her lymphoma had been very fast-growing and was completely different from my disease.

"Malts," a fairly recently defined medical entity, are tumors that grow outside the lymphatic system, in odd places like the gastrointestinal tract and lungs (or even, heaven forbid, in the tear ducts). I have a visible five-and-a-half-inch indolent tumor sitting in the fatty tissue of my lower back, and CAT scans and MRIs taken over the past week also revealed a smaller tumor in my thoracic region, lesions at the base of my lungs, as well as two tiny tumors in the pelvic lymph nodes themselves. A test had revealed that there was no bone marrow involvement, the only good news as far as I am concerned.

Although my cancer is incurable, it is "manageable," Dr. Mears says. "Think of it as a chronic disease." I must now regard myself as having a condition like, say, diabetes. Dr. Mears emphasizes that none of my symptoms is "terribly threatening," that he does not see "grave" danger to my life "now," and that "the picture is not black." There is a relatively new chemotherapy drug called fludarabine that has melted away tumors like mine. Dr. Mears says that the B cells in my tumor "have forgotten how to die," and that this drug "makes the cells learn to die again." (B cells are one of two types of white blood cells -- or lymphocytes -- crucial to the body's immune response. T cells are the other type.)

I had a hint of what was coming on November 22, when a biopsy revealed "lymphoid cells where they shouldn't be," as a pathologist put it. The next day was Thanksgiving and my husband and I and our 17-year-old son, Noah, a high school senior, somehow managed to crawl through it. We had dinner at a neighbor's house. Our 26-year-old daughter, Rachel, a graduate school student in California, was spending the holiday with friends in San Francisco. She was worried and comforting at the same time, phoning often throughout the day and night. Noah, the family computer expert, printed out pages and pages of important news about lymphoma from the Internet. He gave them to me only after my diagnosis was certain, and then only the pages concerning non-Hodgkin's.

I'd forgotten that November 22 was the anniversary of John Kennedy's murder, and was only reminded of it when I watched the late news on television. I remember once saying that I'd never, ever, forget what happened to our country on November 22, 1963, but now cancer had driven it right out of my mind.

When I first heard the news of the extent of my illness, I was stoic. But when Christopher and I drove home from the hospital, I wailed. The cry seemed pitiful, like that of a stranded wild animal. It was a wail that I had heard from my body only one other time: when I was ready to push Rachel into the world.

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My life will never be the same again, I know this to be true, but I will have to learn that this is cancer in the 1990s, and that cancer, too, will never be the same again.

November 28, 1995

I've often said that my friends are my family, and it's true, although I should say they are my extended family because that is even truer. Christopher, Rachel and Noah are so there it's like I'm never alone, even though I know I will have moments of feeling alone. Actually, I've always believed that everyone is alone, and it's just good luck that now and then others can "see" us.

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I have also always held that we must accept dying as part of living. Now I am to be tested. I know that by thinking about death, as I have these last few days, I am not being morbid, but rather, I am making myself -- trying to keep myself -- more alive. Acceptance of death is a way to keep growing. I truly believe this, yet I can't find the strength to share these thoughts with anyone right now.

Rachel asks if I am scared. No, I say, I'm sad. Noah asks very few questions. He keeps searching the Internet for more information.

My main tumor is in the center of my lower back. "Why there?" I ask myself. Is this the same as asking, "Why me?" I hope not. I'm not someone who asks that question.

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November 29, 1995

I've bought dozens of books already, and have made a trip to the library as well. I'm thinking of joining a support group, too. I want to know and to confront everything. I want to know all the facts about my condition all the time. I hope my oncologist can "survive" me.

A book called "After Cancer: A Guide to Your New Life," by Wendy Schlessel Harpham, M.D., contains what should be my mantra: "The important question is not whether you have negative thoughts, but what you do with them. Negative thoughts reveal your fears and concerns, not your beliefs." The bookstore didn't have Harpham's first book, "Diagnosis: Cancer: Your Guide Through the First Few Months," so I have read how to cope with the aftermath of treatment before I have read how to cope with the first few months. Do I always have to do things differently? Even my large tumor is unusual, so unusual that two months before my diagnosis one doctor mistook it for a lipoma, a benign fatty tumor, and another doctor who looked at it about two years ago when it was still a minor bump, or rise in my skin, said it was just the way I was built: "It's your posture."

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Which leads me to another "mantra" from Dr. Harpham: "Laugh every day." I could write a book on this particular advice. Christopher and I have been practicing it for 30 years. When we can laugh at or about a serious situation, we always know we can, will or already have come through it. Sometimes we're the only ones who laugh, but that's OK: It's the secret of our life together and as a family. On a drive to postpone Christopher's jury duty at the Bronx County courthouse before meeting Dr. Mears for the first time, I kept seeing signs in the Spanish supermarkets along the Grand Concourse that advertised "MALTA: 4 For $1." What is Malta? I kept asking my husband. He lapsed into a shtick about its possible meanings that had me laughing hysterically all the way to the hospital. When Dr. Mears said my lymphoma was called malt, we could barely suppress our laughter. I remembered how I fell into waves of uncontrollable laughter when I stood next to my father's coffin 30 years ago. I had been ashamed until I was later told that such a response was not uncommon. Dr. Mears had noticed our amusement -- did he think we were crazy? -- and Christopher then told him about our "Malta" adventure on the way to see him. He laughed, too, at the coincidence. I later discovered that Malta is a nonalcoholic beer. It soon became the name for my tumors.

"Laugh every day."


Natalie Robins

Natalie Robins is the author of eight books, including "Savage Grace" and "The Girl Who Died Twice: The Libby Zion Case and the Hidden Hazards of Hospitals."

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