Journal – December 2001
The oncologist asked me what I knew about the disease. I recounted what I had read though without mention of prognosis. He elaborated for a while on my disease – T-PLL – discussing it in reference to other leukemias. Even though it was classified as a chronic cancer, it acted aggressively, more like an acute leukemia. He talked about his plan to start me on CamPath, a monoclonal antibody. It works differently than traditional chemotherapy which can be thought of as poisons but which are not very effective in combating my disease. Because of the possibility of severe infusion reactions such a fever, chills, shakes, and low blood pressure, he wanted me to enter the hospital for initiation of the therapy. And, no, he did not want to have a central venous catheter put in me due to the risk of infection. He also wanted to start me on two antibiotics, Septra and Famvir, to prevent protozoan and viral infections. The main concerns were pneumocystis carinii and cytomegalovirus, two pathogens that plague the population of persons with AIDS. Even herpes simplex could be a problem for me with my compromised immune system.
I had more blood drawn after the appointment. We agreed on Tuesday to enter the hospital in order to start treatment. Three days with increasing doses of three, ten, and thirty milligrams; followed by weekly thirty-milligram doses. This would go on for 12 – 18 weeks. Once in remission we would consider what is known as a mini allogeneic stem cell transplant. Allogeneic means that I would require donors. I replied that I had two brothers and one sister. He had in fact already spoken with a transplant physician, one that I knew. We had audiotaped this appointment so that we would not miss anything. But I would not replay this tape for almost a month. He also commented that we had covered in twenty minutes what he would normally discuss over four sessions with a less informed patient. Aren’t I lucky! I can immediately appreciate, imagine, and foresee all of the things that most patients are fortunate not to know at this point.
The drive home is fairly silent and dark. On the way my thoughts strangely focused on how to tell the staff, my friends at work that had shown so much concern over the past week. I had already decided that I wanted to talk with them before I started any treatment. Now it was something that I knew I had to do. I called my manager and suggested that I come to the hospital Monday afternoon. It was a bit difficult for me to talk about because she probably knew enough to realize that this was not a good disease.
But now we have a diagnosis. It is strange to be in the position of wishing that I had a
lymphoma. No, we do not get to choose our diagnosis. I temporarily try to enjoy some small perverse pleasure in having a relatively rare form of cancer. I have always enjoyed being a little different from others. This is the beginning of a new journey. We have a diagnosis – T-cell prolymphocyctic leukemia. Stop the world, I want to get off!
I don’t remember Friday evening. I do remember crying in the shower on Saturday when I began to think about my kids and of all the things that I might not be around to see, to witness. I remember crying in the afternoon, sobbing with Tish holding me. This was the longest weekend. I was so scared. I knew too much. I knew too little. I imagined too much. Maybe I imagined too little. Hope seems elusive. And I could not at this point even begin to construct the kind of positive attitude that I know will be essential for healing. These were my days in hell.