Defying My Prognosis

The only hope for my inoperable brain cancer was, according to my doctors, risky experimental drugs. I decided I knew better.

ON APRIL 11, 1996, two oncologists explained to my husband, Ben, and me that I had inoperable brain cancer, probably caused by skin cancer that had spread to the brain. I was 46. That single experience changed my life forever.

Four years earlier, in 1992, I had been diagnosed with what's called superficial spreading melanoma, the deadliest form of skin cancer. Within two weeks, my doctors had removed the malignant mole on my leg and replaced it with a skin graft from my thigh. I had spent a few weeks in bed and then was back to my job teaching high school students. My doctors were convinced the surgery was all I needed and that they had "got it all."

With the brain cancer, I wanted a quick fix, too. But my new problem seemed impossible to mend. MRI films showed that the main tumor was located within the temporal lobe, the major communication center of the brain. A second tumor sat in my right occipital lobe. The result was a splitting headache, as if a crowbar was prying its way out of my brain.

The oncologists encouraged me to undergo a biopsy of the main tumor. If my cancer proved to be melanoma, I could participate in a test of a new drug. Afterward, I could follow up with radiation and chemotherapy.

I had to summon my strength and spirit to ask pertinent questions. "Can I talk with someone who has taken this drug?" I asked. Ben sat beside me in silence and disbelief.

"Well, no. This is a research project. All names are confidential," one of the oncologists said. "They've administered this pill to patients in Europe. You would be the first in our hospital to try it." The doctor went on to tell me only 20 out of 80 patients survived the European trial.

"And if I do this? How long will I live?" My voice quivered from fear. It's one of those questions every cancer patient asks.

The answer was six months.

"And if I don't follow your recommendations?"

"More like four to six weeks," one of the doctors answered.

I felt faint. My aunt and a cousin had both died of melanoma of the brain.

Letting It Sink In

The hospital's neurosurgeons were too busy to view my MRI films for the next five days, giving me time to work on the tremendous fear that had settled in my heart. I was drugged beyond functioning on steroids and anti-seizure medications.

Two days after my diagnosis, we all felt glum and in shock. On a whim, Ben suggested we go out and buy hand drums. Our son, Benny, picked out a conga, and he and I chose a set of bongos for Ben. For myself I found a medium-size drum with a wide head and hourglass figure, which I later learned was a West African healing drum. When I banged the middle, a deep, powerful voice rang out. And so, with no formal training, we began drumming. I sat in our rocker, loaded with drugs, barely able to keep my head afloat. With every beat, my head pounded. The pain both frightened and angered me. But I felt compelled to keep playing, and with every beat, I repeated, "I heal."

Five days after getting my grim diagnosis, I called work and requested a sick leave. Afterward, I finally sat down and read, through tears, the "consent to participate in research" form that my oncologists had given me. The contents shocked me. I would need frequent blood transfusions. Side effects of the drug included breast cancer, leukemia, and death.

Seeking advice, I called on two women I'd recently met who had had experience with alternative medicine. The first woman, Ute, a massage therapist, came to my house immediately and worked me over, both physically and spiritually. I told her about my diagnosis and showed her the consent form. After reading all five pages, Ute declared it madness and urged me not to participate. Then she had me undress for my first-ever full-body massage. Stress had turned my body into hard plastic. While she worked, she reminded me that doctors are not gods. "You can die whenever you want," she told me. "Doctors can't tell you when you will die."

Doctors had given my own mother, diagnosed with pancreatic cancer, three months to live in 1991. She believed them. She lasted 51 days.

Later that evening the other woman, Calista, a local herbalist, came to my house carrying bags of herbs and books. She spoke of several possible approaches, such as eating macrobiotic meals, meditating regularly, and drinking Essiac and red clover teas (some of which I adopted immediately). Calista listened as Ben, Benny, and I nervously debated whether I should follow the oncologists' treatment. Never once did she suggest we abandon Western medicine.

The next day, hospital secretaries called, trying to schedule me for a brain biopsy. If I agreed to the procedure, a doctor would place a small needle through the roof of my mouth. My oncologist couldn't guarantee that I'd come out of the biopsy walking and talking, but he tried hard to convince me of the benefits of the treatment plan.