Journal: February 2001 ~ Different caregivers accompany me to treatment. Tish does duty when I have an appointment to see the doctor or when her schools are not in session. My first manager in oncology, Jan Young, drives me to the clinic in a car with heated seats. One day we buy candy at the “dollar store”. I fill my pockets with candy and pass it out to the people in the lab, to the front office staff and to the nurses. I also offer it to the patients in the waiting room and in the chairs. More and more I start to talk with patients and families.
One day a man receiving chemotherapy tells me that he was last here three weeks before. He said that he felt so sorry for me, that he almost cried for me. Donna tells me later that other patients were sometimes “freaked out” by my demonstration of chills and rigors. Considering that literally all the other patients come and go without obvious infusion reactions, my own must have been singularly dramatic. The sudden vigorous shaking of my entire body, my caregiver and nurse springing into action to minister to me. The nurses had to assure the other patients that I was all right.
One of the other patients, as well as her caregiver, is a nurse. And we discover that her neighbor, Hope, is a nurse that we work with. Jane is treated on Wednesdays and hereafter sits on our end of the room. In a few weeks Hope will act as her caregiver.
At some point my weight reaches a low of 166 pounds, a twenty-pound loss since I started treatments. Then slowly I start to gain weight, ½ pound to one pound at a time. My platelet count slowly rises to near normal – a signal that my spleen, where platelets are sequestered, is clearing of defective lymphocytes. My hemoglobin falls below ten grams so I begin to get injections of the growth factor, Procrit, on Mondays to stimulate the production of red blood cells in my bone marrow and to avoid the need for blood transfusions.
My white count hovers between 2,200 and 2,800 cells. As this occurs my nurses feel the need to wait for the differential portion of my CBC. These are the values that allow them to calculate the number of those white cells that are actually active in fighting bacteria. Normally this is very important. Most chemotherapy drugs preferentially suppress those cells, called neutraphils. In acute leukemias we actually intend to suppress them to nearly zero. The only problem is that in the case of my treatment we technically are not using chemotherapy drugs but rather a monoclonal antibody. And the target of CamPath is my lymphocytes, not my neutraphils. These are the two main types of white cells. So that if most of my lymphocytes are suppressed, then the remainder must be neutraphils. And when my white count is over 2,000, I still have ten times the minimum number of neutraphils which would signal the doctor to interrupt my treatments.
I am concerned about the nurses’ focus on my neutraphil count because it means that we have to wait in the reception room, sometimes as much as two hours, before they even bring me back to the chairs for treatment. This makes for too long a day at the clinic. I resolve just to discuss the issue with Ray. I have a Wednesday appointment.
Tish accompanies me that day. The last time we met with the doctor I had been heavily medicated and was chilling and stuporous during his exam. I had to be wheeled in then out of the exam room. After this day’s treatment is completed, we walk to an exam room. Ray palpates my spleen. Then he declares that it has shrunk from 14 cm below my lower left rib to only 4 cm below. Likewise my lymph nodes have shrunk though some remain palpable. He looks over my labs and announces that I am responding to the CamPath dramatically. I ask a few questions about remission and transplant. Ray stresses that he is not the transplant expert. But he explains that our understanding of how stem cell transplant works has been changing. It still seems the best option. But I will not have a consultation until my remission is proven – a clean abdominal CT scan and bone marrow biopsy.
We discuss briefly the upcoming opera production as we are both fans of opera. I ask Ray about the necessity of delaying my treatment in order to wait for the white cell differential. He decides that not only is the differential unnecessary but that the daily blood draws are as well. We agree to have blood drawn on Mondays only. This is my day to receive Procrit and it is necessary (mostly for reimbursement issues) to know my red cell differential before administering Procrit. We leave the office that day with a sense of progress and a sense of lightness. We have been given some scientific evidence for optimism.