Journal – December 2001
That evening Tish and I took our walk around the unit. The solarium was too cold to stay in for long. The visitor lounge, however, contains a full kitchen, a living room with grand piano and several couches. I was tired so we sat down alone in the dark on one of the couches. We talked about our kids and how to approach talking with them about my disease. I feel totally unprepared to deal with this. The mere thought brings tears. I tell of my need to feel that we are prepared financially. How much life insurance do I have? What about a formal last will and testament? And there are so many things that need to be done with the house. We resolve to look into these things. I feel some sense of relief at having discussed these issues.
Tish insists on spending the night. My sister, Barbarann is staying at our house these three days to help care for my 104 year-old grandmother. The nurses say that they have a cot but that it is not very comfortable. The mattress is one of the most decrepit I have ever seen. Tish tries it out and says that it feels like she is lying on box springs without padding.
My night nurse, Kelly, comes in. I recognize her and give her a hug (hugs come unnaturally easier to me these days). She worked for a long time at my hospital. I encountered another such nurse, Michelle, on day shift. I was manager for both of them. This is beginning to feel more like home.
Tish tried to make herself comfortable in the recliner. She eventually ends up in bed with me. I sleep for a while but awaken early in the morning and move to the recliner myself. As it becomes light and the day shift arrives, Tish wants to trade places so that it does not look as if she has kicked me out of bed. She gets in the recliner and discovers rather unpleasantly that I had had night sweats and had saturated the sheet that covered the recliner.
On this third and final day I had a new nurse who was training a newly hired LPN. They both seemed nice. I go through my daily shower and bed-making routine, then take my morning walk around the unit with Tish. I feel weaker and walk more slowly than when I arrived on Tuesday. We are visited in the morning by a dietitian, as I continue to lose weight due to poor appetite, and by the social worker. In a real perversion of what we have both experienced the true mission of social work to be (Tish has been a social worker for twenty-five years), this social worker introduces herself and then hands to Tish an twelve page application for a $500 assistance grant from the Leukemia and Lymphoma Society. She proudly explains that they like to contact the families of newly diagnosed leukemics as soon as possible in order to present them with this application. She gives Tish her card then leaves the room. This is a social work intervention requiring a person with a Masters degree?! No assessment of financial needs, emotional and psychological support systems, living and home situation, need for durable medical equipment or home care. Upon reading the application weeks later, we learn that we should be dissuaded from applying for the funds unless we are really in dire need as funding sources is limited.
The doctor does not arrive until late in the morning, which pushes back my treatment since he was writing the CamPath orders day by day. I was given my premeds and the room spun slowly. The nurse told me that she had connected me to the fifteen foot tubing which contained 40 cc of saline priming fluid. She said that my treatment needed to be done in two hours so that she had added that 40 cc to the 100 cc of CamPath. This made 140 cc divided by the two hours, resulting in a rate calculation of 70 mg per hour.
I nodded but this did not seem quite right, even to my addled brain. The LPN kept track of my vital signs. But the more I thought about this calculation method the more I became convinced that it was faulty. I resolved to speak to the nurse when she next came in. By then it was nearly an hour into the infusion. I apologized for questioning and allowed that I was drugged. But I said that it seemed to me that the 40 cc would take over thirty minutes to infuse. After that my CamPath would only have less than 90 minutes to infuse, not the two hours recommended by the protocol. And the rate of 70 cc per hour was 40 % faster than I had been getting, 40 % faster than calculated by the pharmacy.
She smiled and said that this is the way she had learned to administer chemo at the university hospital. But if it made me more comfortable she would turn the rate back to 50 cc per hour. The nurses did not monitor me as closely as the first day, especially after the eventless second dose. But they did tell Tish to call if I started to react. She could even pull the call light jack out of the wall. This triggered a more urgent alarm in the hall. Sometime before the infusion ends the familiar discomfort begins to creep about my chest, followed quickly by generalized tremors, then full-blown rigors. Tish had pulled the cord out of the wall, then gone to the doorway to ask for help. The response seemed prompt. The two of them worked on me, drawing up the flushes, pushing the drugs. They noticed that my nailbeds were blue or cyanotic so put me on 2 liters per minute of oxygen through a tube under my nose. The shakes did not seem quite as violent as the first day but took longer to bring under control. Body and mind were limp once more. It was dark outside when I awoke.