Breast Cancer is Not a Lump--It's a Killer Disease

by Jamie Mendlovitz

I am one in eight American women. I am a statistic, part of an epidemic. Fifty years ago, one in twenty women got breast cancer--my great grandmother was one of them. She received what was then state-of-the-art treatment--a radical mastectomy plus radiation. She lived eight more years before she died in her 60's

In 1990, at the age of thirty, I discovered a lump in my left breast. I was told I was one of the lucky ones--I had detected it early. Now, at thirty-two, the cancer has metastasized to my bones. I am fighting for my life and trying to make sense of what has happened to me. I am not a doctor or a research scientist. I'm telling my story because it helps me focus my thoughts, and because someone else may benefit from its telling. I don't believe I have answers, but I do have my experience.
I had been taught breast self-exam (BSE) by a college gynecologist, and despite my sometimes scattered life remembered to do it once a month, just as I got a pap smear once a year. In May of 1990, living in Venice Beach, California, I detected a lump in my left breast. I told a friend about it and she made me promise I would have it checked out. This discovery came at a major transitional point in my life--I was quitting my safe and promising career in the movie industry and striking out on my own as a musician. The lump seemed unreal, a kind of punctuation point marking the end of secure employment and the beginning of a more uncertain life.

A month went by in a strange sort of happy denial. I took a vacation, relaxed. I told more friends about the lump, and finally a critical mass of them insisted loudly enough that I take action. I went to a breast center and had a mammogram. The technician seemed alarmed. She called in the doctor, who performed an ultrasound reading. He showed me the black and white picture. It was big. The doctor asked if he could perform a needle aspiration to draw cells out of the lump to test for malignancy. I agreed and he stuck a needle in my breast. I cried.

The next day the doctor told me I had breast cancer. I phoned my parents who lived back East. I called a few close friends. I scoured Los Angeles interviewing oncologists and surgeons, and found a surgeon I trusted and an oncologist who seemed both intelligent and caring.

I had a lumpectomy--such a prosaic and descriptive word. In my case, I was told a mastectomy had not been proven to be more effective. These were more enlightened times than my great grandmother's. I was glad to keep my breast. The pathology report came back. The cancer had traveled to two lymph nodes. That surprised me. I thought breast cancer was just a lump that you found early and had removed.

With two nodes positive, I was still given an excellent chance of complete recovery if I underwent adjuvant therapy--radiation and chemotherapy. I believed in the treatment with all my heart and mind. I believed the statistics were on my side.

Five weeks of radiation treatment left my breast ulcerated with blisters. Six months of "state-of-the-art" chemotherapy--Adriamycin, Cytoxin, and 5-FU--left me looking like Sinead O'Connor's nightmare sister--hairless, physically shot, chemically depressed.

The support groups I went to including the famed Wellness Community which I had read about in Gilda Radner's book--as well as the books I read from Bernie Siegel to Carl Simonton, stressed belief in one's treatment, a feisty attitude, and letting go of fear. How I interpreted this advice was to believe I had been cured completely. Period. I was one of the lucky ones. I'd experienced a harsh rite of passage, but never did I feel I was in danger of losing my life.

How I chose to live my life was to cram it with as much activity, particularly work, as possible--not because I thought I was in danger of dying, but because I thought I had been given a reprieve and I wanted to take advantage of it. I was finally doing what I wanted with my life, and chemo and radiation weren't going to stop me. So during chemo treatments, I made business calls. I played music in smoky clubs after being sick all day. When the treatments ended, my pace increased. I free-lanced as a script reader for movie companies to make money while I stayed up all night in recording studios. I was following my bliss, living my dream--just what the books on mind/body healing talked about. Don't leave your dreams unfulfilled.

Most of my friends thought I was crazy to live at the pace I was living. My doctor was thrilled for me, and every time I went for a check up she asked how "the music" was going. She wanted me to be happy, to be well. The music business was far more brutal and degrading that I could ever have imagined, but I was determined, and I knew from my movie business experienced that perseverance was everything.

In August of 1992, I was preparing for a business trip to London. I went to my oncologist for a follow-up visit. To my surprise, I had a fever of 102 degrees. My blood counts were normal. My oncologist thought the fever was probably a precursor to pneumonia, which was then epidemic in L.A. She gave me antibiotics and wished me good luck in London.

I arrived in London with what a doctor at the National Health diagnosed as pneumonia and pleurisy, very Dickensian diseases appropriate to London. I took more antibiotics and felt better. A week later the fever came back along with the body aches. I took more antibiotics, always exactly as prescribed. The British doctor seemed puzzled. A chest x-ray and blood tests revealed nothing. But the fever would not go away and the body aches got worse.

After convincing my oncologist that coming back to L.A. and finding out what was wrong with me was more important that my business trip, I flew back. By then I could barely walk. I was in severe pain--it felt like my legs were exploding.

I checked into the hospital and the tests began, for Lyme disease, AIDS, a heart-valve infection. As a precaution, the cancer tests which had just been run in August were done again. I was convinced I had an immune disorder of some kind, that my body was telling me to slow down. I mentally prepared myself to hear that news, and thought about where I could rest and recuperate for a few months. Never for one moment did I think the cancer was back. I had been cured. The blood test had been clear.

The CAT scan showed lesions on several bones. I had never heard the word before, except in connection with AIDS, but I knew it was a bad word. The bone scan "lit up like a Christmas tree," confirming that cancer had metastasized from my thighs up through my spine and ribs to the base of my skull. The bone marrow extraction confirmed that the breast cancer which I believed was gone forever was in the marrow itself.

In shock, recognizing that I was having a very different experience of cancer this time around, I asked my sister in Baltimore if I could come and live with her. Unlike the first time around, I knew I could not work--I could not even walk. I needed a safe place.

My doctor took me into an examining room, told me I would die of breast cancer and quoted fourth stage breast cancer median survival rates which made me swoon--eighteen months to two years. I asked her to tell my family what she had told me. This was one statistic I would not keep to myself. I watched my parents age twenty years in thirty seconds.

I was told there were three treatment options. None would be a cure. The best I could hope for were words I grew to hate--palliation, along with "quality of life." Translation: make the patient comfortable before she dies. Chemo would buy a year. Hormonal therapy, starting with Tamoxifen to block the cancer's ability to feed off estrogen, might buy a year and a half before it stopped working. The doctor I met with at a bone marrow transplant unit, an honest and humble man, told me that none of the women who had undergone transplants for breast cancer had remained clear of the disease for even a year. Around the country, the statistics were equally grim. Whereas, the BMT success rate for leukemia and lymphoma patients is fairly high, it is dismal for breast cancer patients.

Chemo, radiation, surgery, and BMT do, of course, cure and prolong the lifespans of many cancer patients. But in my case, there was no magic bullet, no high- tech solution. My mother called every major cancer center on the East Coast, looking for answers. My father talked to doctors as if he were gasping for his dying breath.

My sister and I became convinced that having reached the limits of conventional medical science might be a blessing in disguise. We devised a treatment plan based on what we thought were viable options. The only logical deduction I could make was that, for whatever reason, the chemo and radiation had not worked, so there was no reason to start chemo again. The Tamoxifen seemed relatively non-invasive and possibly helpful, at least in the short term. The so-called alternate treatments included a vegan raw food diet, acupuncture, massage, meditation, colonics, vitamins, prayer, and spiritual healing sessions.

Something started to work, because before the Tamoxifen kicked in I got off the painkillers I had been on. I went to a Boston holistic clinic whose main medicine was wheat grass juice, which I learned to imbibe, if not like. I contacted a woman with bone-only metastatic breast cancer who had been through chemo, radiation, and a bone marrow transplant with no success, but whose cancer miraculously disappeared when she tried the nutritional approach I was now using. She gave me tangible hope. I did not want to be a pioneer--I just wanted to save my life.

I believed I was in the process of detoxifying my body, giving it a chance to heal. The pain went away. My doctor, whom I had dubbed "the angel of no false hope," was amazed. A blood test in November showed that the levels of bone activity had gone up--either my bones were being destroyed or they were healing. I chose to believe they were healing.

I read Bernie Siegel again, went to a workshop and met him, thanks to my mother. He seemed absolutely authentic to me. I went to another cancer support group, and met several people who were outliving the dire predictions doctors had made for them. I started to dare to hope that I would outlive my diagnosis, that I would send my doctor a Christmas card in five years. I went to New York to visit friends, and came back early because I realized that the pace of life there was too strenuous for me now.

Christmas and New Years came--I was in no mood to celebrate. I wasn't depressed, but the holidays distracted me from the healing work. I told my parents I could not see them right now--could not see the anxiety in their faces as they tried to figure out if I were going to live or die. In the business now of saving my life, I was learning to be honest with people and tell them what I really needed and what I really felt instead of placating and trying to fit in.

At present, I am pain-free. I tire easily. The tests that measure, with Godlike capriciousness, the levels of cancerous activity in my body are going down. That is good news. I don't project my life very far into the future, certainly not past six months. I do have a Plan B, C, D, E, F and more if Plan A doesn't work out--every thing from experimental mainstream medical treatments to other holistic therapies. I try to keep my eyes open rather than trusting anyone or anything to provide answers for me. I do hope, every second, I read, I think, and I play armchair epidemiologist.

When I first got breast cancer, I asked my oncologist to explain to me how I got it. She told me I'd never know, which, narrowly interpreted is true. She didn't want me to blame myself. With the help of my youth, medical science, and a positive attitude, the point would hopefully be moot.

Now my youth, as a premenopausal woman with fourth stage breast cancer, is against me. Medical science offers no cure. I still have a positive attitude, but it is informed by the questions of what caused the cancer and how do I stay alive. I look for clues everywhere. Somehow the cancer overcame my immune system, created a lump, survived chemo and radiation and lashed out again two years later. It could have been heredity, or stress, or a high-fat diet, or all the diet coke I drank, or the birth control pills I took, or all the drugs I took, or the alcohol I drank, or the cigarettes I smoked. It could have been the toxic environments I lived in--New York City and smoggy L.A. It could have been triggered initially by the painful breakup of a love affair, which may have suppressed my immune system, and the recurrence of my ridiculous workaholism, which may have suppressed it again. The radiation from my computer, the cumulative effect of X-rays, the electromagnetic fields which surrounded me, microwave ovens, the pesticides I used, the water I drank, the bleach I dyed my hair with--there were studies to support all of those factors as causes of breast cancer.

My best guess as to why I am one in eight when my great grandmother was one in twenty is that all of the above and more are true. In my layperson's, disease-eye view, breast cancer is an epidemic with multiple causes, like the antecedents for World War I or the causes of the decline and fall of the Roman Empire. Was it the lead pots or the stagnant economy or the barbarians at the gate? All of the above.

As people around me became HIV positive in the 80's, I thought about what their choices were. I was sure that if, God forbid, I tested positive, I would become political. Silence = Death is the AIDS activist slogan, and it's true. People with AIDS came at first from two politically impotent groups--gay men and IV drug users. The powers that be did not care if they died. Societal pressure was not brought to bear on the disease, although many caring scientists and doctors worked from the beginning to find a cure.

When I got breast cancer I'd like to say I saw it as a political issue, but I didn't. I knew, for example, that breast cancer killed many more people in the 1980's than AIDS, but I believed I would be cured, so that the causes of the disease didn't matter. The recurrence has changed me.

I try now to create an environment which will support my life, both inside my body and in the world around me. I live in a house where we don't use overtly toxic chemicals. I eat organic food and drink filtered water. I take immune-bolstering, anti-cancer vitamins. I stay away from cigarette smoke and car exhaust to the best of my ability. I try not to create stress-- a hard habit to break--when I catch myself doing it, I try to stop.

I believe we all have been guinea pigs in a vast, unfortunate experiment. It's time to stop being naive, if in 1993 we can even claim naivete rather than denial. Corporate America has not been putting our health first, and the examples are legion, from Manville's cover up of the hazards of asbestos to the perpetuation of DES and the Dalkon shield IUD on a trusting and unsuspecting population of women. That the products we buy, including the processed food we eat, may be hazardous to our health should not be news to anyone.

Medical science, with its emphasis on early detection of breast cancer, supports the status quo by treating the results of the causes rather than the roots. Doctors, most of them caring, overworked and knowingly or unknowingly myopic, don't generally set public policy. We wait for the medical establishment to find a cure for cancer while we continue to be exposed to a myriad of carcinogens and live carcinogenic lifestyles.

Bernie Siegel and other gifted advocates of mind/body healing have given cancer patients hope, and a way of taking control of their treatment by taking personal responsibility for the quality of their lives. But we do not live in a vacuum, we live in American Society. Citizens in large numbers CAN set public policy, can demand, as Greenpeace advocates, that chlorine-based toxic chemicals be phased out immediately, as they have been in Israel, where the breast cancer rate has dropped precipitously.

Women in Long Island, where breast cancer rates are higher than the national average, and where, coincidentally, the level of groundwater contamination is also high, demanded that the Center for Disease Control study the problem, to answer the question of WHY. The study which came out in December 1992 actually stated that there was no reason, and that the upper-middle class Jewish post-menopausal, women were simply in a high-risk group, for unknown reasons. Tell that to the Israeli women who are now enjoying a lower breast cancer rate thank to enlightened public policy!

The women's movement taught us that the personal is political. Breast cancer is not just a lump, medical science cannot always save us, and government and corporations are not always looking out for our best interests. Transforming the way we live our lives individually, and joining with others collectively to demand not just more research dollars for breast cancer, but a safer, cleaner, more humane society are both crucial to changing the environment which plays host to this killer epidemic. So I believe.

Jamie Mendlovitz has worked as a theater and film producer, musician and political activist in New York and Los Angeles. After a valiant battle for her life, Jamie died on October 20, 1995.

Jamie Bradford Mendlovitz, 35, left this life on October 20, 1995 at her home on 9709 Sherwood Road, Owings Mills, Maryland. Jamie, extraordinarily beloved daughter of Roberta Bradford Mendlovitz of Clinton, CT and Saul Mendlovitz of Montclair, NJ, had lived in Towson and Owings Mills for the past three years as she battled breast cancer, which was diagnosed in 1990. Born in Boston, MA on May 18, 1960, Jamie graduated from Derby Academy in Bingham, MA. St. Paul's School in Concrd, NH in 1978, and Barnard College, New York City with a BA in English in 1983. She was a musician, songwriter and scriptwriter in Los Angeles until 1992. Jamie's music has been used in many films from Hollywood and HBO. Her screen credits also include work done as Production Associate for Robert Greenwald Productions, Hollywood, CA. A lifelong lover of and participant in theatre, she acted as director at the Ensemble Theatre in New York City for some years. From 1982 to 1986, Jamie worked as a committed grass roots political activist for the New York Public Interest Research Group (NYPIRG). She was a tireless environmentalist. Her sensitivity to others was without peer, her quest for knowledge and understanding of life relentless. Her passing has truly dimmed the lives of the countless people who knew her. Ms. Mendlovitz is usrvivied by her parents, her sister Jessica Dibb with whom she made her home, her nephew Joshua Dibb of the same address, her brothers John and Michael of Montclair, NJ, her sister Martha of London, England, many devoted friends and her cat Frances.