In June 1994, I was suspected of having an illness called chronic lymphocytic leukemia-CLL for short. I had been referred to Dr. Garbo, a hematologist in my town, after a blood test showed an unusually high white blood count, about 40,000 (a healthy white blood count is between 5,000 and I0,000). Furthermore my count kept rising, instead of dropping as it would with an infection. A painful bone marrow biopsy confirmed the diagnosis. The progress of the illness is currently measured in stages, as with cancer, and I was somewhere between "0" and "I" (with stages 3 and 4 representing the most-advanced stages, before death). I was told that there is no cure for chronic lymphocytic leukemia, and that people with CLL at my stage can expect to live another 10 years, on average.

This was devastating news. I was 52 years old and had just gotten married for the second time. Between us, my husband and I have four children. My two sons had a year more to go in college, and Sandy's son and daughter were in their mid-twenties at the time. I had been looking forward to many things, among them working for another I0 years at my job as magazine editor at Cornell's business school, completing a graduate degree in creative writing, attending my children's future weddings, getting to know my grandchildren, and purchasing a house with my husband that could accommodate our enlarged family and a painting studio for me. Now it seemed as if there wouldn't be much of a future.

I continued to have bi-monthly blood tests, and my white blood count continued to climb. I also developed other CLL symptoms-swellings in the lymph glands around my neck. Since there is no recommended conventional medical treatment for CLL in it's earliest stages, I tried a course of alternative therapy, acupuncture, massage, imaging, and a formula of Chinese herbs prescribed by someone recommended by my acupuncturîst as the foremost herbalist in the country. All these approaches failed. In August 1997 my count had reached about 95,000. Dr. Garbo recommended that I start a course of chemotherapy. I was distraught, especially since I knew that with CLL, chemo is only a stop-gap measure that becomes less effective after each course of treatment. I feared that my immune system would be compromised by the procedure and that I would decline and die, just as a neighbor of mine who also had CLL had died that past year.

My brother David, at my request, did a search for me at Plane Tree, a medical library in San Francisco, copying every relevant article he could find on my illness. My husband, Sandy, and I pored over the papers, but couldn't make much sense of them other than to discern that an alkalating agent called chlorambucil, used in chemotherapy for treating CLL, had formerly been thought effective in haltin the illness, but was now proven to be ineffective. In its place, a drug called fludarabine, whose effectiveness was still being tested, was being used. The paper had been published over a year before.

Then my brother Robert recommended that I talk with a medical researcher and writer named Henry Dreher. Henry had been helpful to a friend of Rob's named Marcy, who had been diagnosed with a more lethal leukemia, CML, years ago. According to the medical experts, Marcy should have died within the year of diagnosis, but with Henry's help she found a hospital in Texas that treated her illness with interferon, experimental at the time. Her leukemia went into remission. Years later, she was doing well. I called Henry Dreher and found him to be both sympathetic and knowledgeable about various leukemias. I hired him to do a medical search.


Weeks later he produced a remarkable report that was clear, understandable, concise, and absolutely thorough. In it, he summarized all the current effective treatments for my CLL, both conventional and alternative, and more important, pinpointed the place where all the important, cutting-edge investigative research was being done. At this point, fludarabine had been proven to be an effective chemotherapy treatment for CLL. The place that had tested it and promoted its use turned out to be M.D. Anderson Cancer Center in Houston, Texas, the same place where Marcy had had the treatments that had saved her life. I then spoke to Henry over the phone, and he was optimistic about my chances for long-term survival, and very positive and encouraging. After talking with him, my mood changed from one of bleak despair to one of hopefulness. Henry then volunteered to call the doctor who was the CLL expert at M.D. Anderson, Dr. Michael Keating, and discuss my case with him.

After my husband, Sandy, and I reviewed Henry's report, we noticed that Dr. Keating's name was the first name on many of the medical research papers we ourselves had looked at from Plane Tree.

Henry then reported back by phone that he had had a lengthy conversation with Dr. Keating, who encouraged me to come down to M.D. Anderson and be evaluated. Keating convinced Henry that a new drug combination including fludarabine was getting far better results than fludarabine alone. Henry also explained at length the kinds of cutting-edge research and treatment that Dr. Keating and his team were doing with CLL patients at M.D. Anderson. "If a cure for CLL is found, Dr. Keating is likely to be the one to find it,” he told me. Although I had originally no plans to pursue anything but a conservative course of action with my illness, now with chemotherapy looming in my immédiate future, I surprised myself and decided to meet with Dr. Keating in Houston.

I believe that that decision, and Henry's help, saved my life.

Dr. Michael Keating, and the expertise at M.D. Anderson, tumed out to be all that Henry had suggested and more. Dr. Keating told me that he would do his best to see that I remain alive and well into my eighties. That promise gave me all the hope I needed to reimagine my future as long and fruitful.

After an amazingly painless and brief bone marrow biopsy (they're experts at the procedure at M.D. Anderson, since they do dozens a day), Dr. Keating also recommended chemotherapy. But he proposed an experimental treatment-a mix of fludarabine and an alkalating agent called cytoxan. Both had been tested as safe separately, but I would be part of a study of CLL patients receiving them in tandem. Dr. Keating predicted that the treatments would double the length of time my CLL would remain in remission (fludarabine administered alone puts 80 percent of CLL patients into partial or total remission for about 4 years). I decided to take a chance and participate in the study, provided that the treatment could be administered in my home town in my hematologist's office. Dr. Garbo agreed to participate, using the protocol prescribed by Dr. Keating.

I began having the chemotherapy treatments in December 1996 and they were completed in May 1997. I was able to tolerate the treatments, and my cancer went into total remission.


After further tests at M.D. Anderson, it was determined that my bone marrow was healthy enough to "harvest." I had the harvesting procedure in September 1997, in which some of my now -healthy bone marrow was aspirated out and stored for a possible future transplant should I need one if and when the cancer returns and future chemotherapy-treatments prove ineffective-a kind of insurance policy.

While I was undergoing treatment and making my plans for the harvesting, I continued to stay in touch with Henry, and his voice at the other end of the phone was like a ray of sunshine, helping me find the faith and courage to go on. I felt that he truly cared and was genuinely interested in what happened to me.

Except for taking time off for the chemotherapy and recovery, I continued at my job. This fall semester I completed my last course toward my graduate degree in creative writing, and this coming year I hope to complete my thesis and earn my MFA degree. My husband and I moved to a new house this summer, which we found about a week after the chemotherapy treatments ended, and we just set up an art studio for me in the basement. Now all I need are the grandchildren.

This fall I got a call from Dr. Garbos nurse. It seemed the office had a patient newly diagnosed with CLL. She was having a difficult time absorbing the news, and was distraught-just as I had been three years ago. Would I talk with her? Although it was difficult to see someone so upset I was able to talk with her and give her some of the hope and help that Henry had given me, letting her know that the diagnosis was not necessarily a death sentence. I fished out Henry's report and read it over a second time. Once again I was impressed with its accuracy, clarity, thoroughness, helpfulness, and most of all the hope it generated in me. As I continue to learn to live with this illness, I know I will keep coming back to it.

I have also recommended Henry Dreher to others I know who are coping with life-threatening diseases-including the family of a small boy who is a survivor of surgery for liver cancer. They have all returned to tell me--unsolicited--how helpful and compassionate Henry was. I feel truly fortunate to have been able to call on his help.


LINDA"S CASE HISTORY