A Fourteen-Year Journey:

Chapter One “I Will Not Be Out of Control”
A random blood test initially disclosed Mary Ellen’s leukemia. During the time she taught handicapped pre-school students at United Cerebral Palsy (UCP), the school held annual health fairs for the benefit of children, parents, staff and employees. Mary Ellen, never one to pass up a “freebee,” had her blood work done for free during the 1992 Health Fair and directed that the results be sent to our internist at the time, Dr. James Studdiford. When our internist saw the results of her blood test, he called and asked Mary Ellen to come into his office to retest her. The retesting confirmed Mary Ellen had chronic lymphocytic leukemia (CLL). CLL can start with a change to a single white blood cell called a lymphocyte. But CLL is nastily progressive. Over time, defective CLL cells multiply and replace normal lymphocytes in the blood and bone marrow ultimately accumulating in the lymph nodes and spleen. Too high a number of CLL cells in the bone marrow will crowd out normal blood-forming cells. Most people with CLL are over 60 years old. Mary Ellen was just 48.Jim Studdiford told Mary Ellen there is no known cure for CLL, but immediately added the disease progressed slowly and that a lot of ongoing research looked promising and might ultimately be of use to her. He promptly made arrangements for Mary Ellen to be seen by the head of hematology/oncology at Temple University Hospital, Dr. James Day. On a beautiful, cool and sunny late spring afternoon, we drove to Temple University Hospital mostly in silence. Scared and uncertain, we did not know what to say and neither of us knew what to expect or what the future held. Dr. Day was direct, compassionate, yet unflinching. He confirmed that no known cure for CLL existed. He took us on a quick tour of his laboratory, showing us with pride the University Hospital’s newest and most sophisticated technology that would produce the most accurate blood counts. He told Mary Ellen how frequently she would need to have her blood tested, every three months.After the tour, we returned to Dr. Day’s office to talk. We asked all the typical, scared, nervous questions about immediate impact and the future course of the disease. Dr. Day described the various stages of CLL and explained how the ever increasing numbers of lymphocytes would begin to take over the lymph nodes and the spleen causing both the lymph nodes and the spleen to swell and enlarge. He identified when treatment would begin and explained what the standard chemotherapy treatment would be like. Among the various chemotherapy possibilities back in the early 1990’s were Chlorambucil (Leukeran) and Fludarabine.At the time of this first meeting on April 22, Mary Ellen’s white blood court was at 20,000, stage one. Dr. Day told us the disease could generally progress slowly and that there might be no need for treatment for a few years. He assured my wife that he would make sure she received the best of care and treatment. Like Dr. Studdiford earlier, he tried to encourage us by mentioning the many research studies already underway and suggesting that one of them might well be successful. This same statement appears to be equally true, or equally untrue, today over 20 years later. By the time of this first visit, I had obtained the medical school hematology textbooks from Temple University Hospital, Jefferson Medical Center and the University of Pennsylvania Hospital. I was reading as much as I could both in the medical texts and on-line about leukemia in general and CLL in particular. I read about Chlorambucil (Leukeran) and Fludarabine and their powerful side effects in the hematology textbooks. And it came as no surprise to me when Dr. Day stated that he felt treatment should begin when Mary Ellen’s white blood count reached 50,000. Having provided all his information, Dr. Day stood up, reached out his hand to shake Mary Ellen’s hand goodbye. He clearly expected us to get up, leave the office and drive back home, in effect, handing Mary Ellen’s future over into his hands. But Mary Ellen never budged from her chair at the side of his desk. Very calmly she looked at the doctor and said “No, there must be another option.” The doctor assured her there were no other options, no other alternatives. Mary Ellen persisted. She continued to say “I will not be out of control of my own life, there must be another option.”For ten to fifteen minutes this stalemate continued. Dr. Day remained standing while Mary Ellen remained firmly seated. After walking around the room a bit, Dr. Day finally stated that during his thirty plus years of practice he had only seen one patient, also with CLL, who did not require chemotherapy. He said the man was practicing “this strange Japanese macrobiotic diet” and that, although he took supplemental B-12 injections, the man had never needed treatment. Dr. Day then volunteered that this same man regularly assured the doctor that he would never need treatment. Mary Ellen immediately wrote out her name, our address and telephone number and gave it to Dr. Day asking, almost demanding, that the doctor contact his other patient to inquire if the patient would be willing to speak with her. Ten days later Mary Ellen received a call from a business man in Pittsburgh who explained that his wife, who was Japanese, introduced him to macrobiotics when he was first diagnosed with CLL. He explained that for more than 10 years he controlled his leukemia with diet and exercise.