Journal – December 2001
Monday, December 17, perhaps my last independent day for months. I go to my dentist’s appointment in the morning. I have brought for him a copy of an information sheet that I wrote called Everything You Wish You Didn’t Need To Know About T-cell Prolymphocytic Leukemia. He read it while waiting for the analgesic gel to take effect on my gums. Then he said, “What happens if I cry?” I replied that I would probably start crying too (crying comes easily now). He did my fillings and than he did the cleaning himself, the whole thing. Normally the dental hygienists do the cleaning and he inspects. He makes some casts for me to be used for floride treatments at home during my illness, especially my immunosuppressed periods. He says that he will bring them by my house. My dentist gives me a hug before I leave.
I drive across town to Community Hospital, my hospital. I wanted to see people before I start treatment. After my immune system is suppressed even more by the biotherapy, a hospital, which is the repository of resistant super-germs, is a potentially dangerous place for me to be. I will probably not return until I am in remission. I also wanted for people to see me looking relatively healthy.
It is a long walk from the parking garage, through the professional building, to the hospital proper and up to the fourth floor. My fellow colleagues are already seated around the long table. It is a busy day on the unit with a crisis on west wing. But the room is full.
I begin by telling them that one of the ways that I am dealing with this is clinically. This is what I am familiar and comfortable with. This is a rare disease with a little used treatment (we have only used CamPath on one patient). I begin with marker in hand, reviewing on the white board basic facts regarding leukemia, then more specific facts about CLL, and then about T-PLL which is my disease. I review how chemotherapy works in contrast to CamPath, which is a monoclonal antibody, a recombinant DNA material produced in a laboratory. It is manufactured in Germany and was only approved by the FDA in May of 2001. This is a synthetic, antigen-specific antibody that has been developed to recognize and attach to an antigen or protein which is expressed on the surface of leukocytes. In this case it is designed to attach to something called a CD-52 antigen which is present in large numbers on the surface of both B- and T-cells. My killer cells are alerted to this antibody-antigen complex and proceed to attack the cell, leukocytes both good and bad.
I am aware of people coming and going from the classroom. Some had to check on patients, others later told me that they just could not sit there while I talked about my illness. At one point Leon, one of our techs, gets up and offers me his chair. I assume that he has to return to work but he stays in the room standing. Apparently I looked as if I needed to sit down. I was aware that my hands seemed to be shaking a bit. As I sit down I notice that people are tearful.
I did not want to be emotional myself until I was through with the lecture part. Now I told them how I was feeling subjectively – the nuisance abdominal and chest pain, the insomnia, the loss of appetite and weight. This was the emotional part of the meeting. I told them about feeling like Jimmy Stewart and I became a bit tearful. There was really a down feeling in the room. There were snacks and cookies that no one seemed to be in the mood to eat. So I tried to pick the mood up and encouraged people to eat. Other people came in and out of the room. I got and gave more hugs that day than any day previously in my entire life.
The walk back to the garage was even longer. It was dark out now. My day of independence was drawing to a close. But I had accomplished something that I had considered important for me to do. I had always imagined myself as being a person whom people regarded as pleasant to work with, easy-going, willing to pitch in, eager to pass along anything I knew about nursing and cancer. It has always been important to me that colleagues like and respect me. But I was not and am not prepared for the affection in which people seem to hold me, nor for those tender mercies which have been showered upon me.