Journal – December 2001
It is now time to write about that necessary rite of passage – the first stay in a hospital. I thought it would be a breeze. Hospitals are a second home for me. I have spent a good part of the past twenty years in hospitals. And I had seen my own patients do very well with Rituxan, another monoclonal antibody used for lymphomas. But the hospitalization and my treatment were harder for me than I would have imagined. I understand more than ever the desire of some of my own patients to go home and to be a person again.
So on Tuesday, just one week before Christmas 2001, I entered the hospital. Please recall the small circus of confusion when I tried to get registered at the hospital for my biopsy. This time we were asked by my doctor to report to the hospital at 7:30 AM. Tish drops me off at the door while she parks in the distant garage. I approach the same information desk to find the same receptionist who consults the same pile of clipboard lists with, of course, the same result – no “Dennis Pyritz”. She begins making her phone calls. I am still standing at the desk when Tish comes in from parking the car. Tish has even less patience than I do in such matters. Predictably we are eventually steered by to registration. They tell me my room number and assure me that I am on the oncology unit (I am leaving nothing to chance).
We arrive on the seventh floor and follow the signs indicating my room number. The nurses at the desk are friendly but admit cheerfully that they had no idea that they were getting an admission. My nurse, Debbie, seems to be charge nurse for the shift. My room is a nice size for a hospital, private as befits a person with a cancer diagnosis, and has a great view of the interstate highway curving around to reveal the university medical center beyond.
My oncologist shows up shortly. We briefly discuss my weekend and he examines me. Then he says that he misspoke regarding the CamPath protocol. It requires treatment three days a week, not once. I had already begun to wonder about this after reading the CamPath protocol on the Berlex website and talking with Monica, my pharm D. This small fact will greatly impact the tenor of my life for the next three months, impact it more in fact than I, a virgin cancer patient, can presently imagine.
With prescience he tells Tish “Your husband is much sicker than he looks right now. And after the treatment he will look much sicker than he actually is.”
I quickly settle in, electing to wear oncology nursing t-shirts and hospital pajama bottoms instead of the more traditional, open-in-the-back gown. My vitals are taken. I try to learn the staff’s names. I let Debbie know that I am an oncology nurse. I ask her what she knows about my disease and if she has ever given CamPath. I am not surprised that she knows little about either. I am prepared for this. I have brought along my own purple dry-erase marker. And sure enough there is a large white marking board in my room. I erase and move my vitals signs to an upper corner. I then fill the board with an outline about CLL, T-cell versus B-cell disease, the role of monoclonal antibodies, the major side effects of CamPath, with a few more trivial but interesting facts thrown in, such as the fact that CamPath is manufactured in Germany with recombinant DNA technology utilizing the ovaries of Chinese hamsters.
These efforts to educate my caregivers serve their intended purpose but also, as Debbie admits, tend to intimidate them. I vow to try to be more low key, though not, as you will read, always successfully. Blood is drawn and the wait begins. Doctor’s orders need to be processed, the pharmacy notified, the unit pharmacist needs to check my height and weight (although dosing with CamPath does not vary with body surface as is true of traditional chemotherapy). We all know that my doctor wants the CamPath started as soon as possible. Somehow physicians forget what nurses know – that ironically hospitals can be among the slower, more ponderous of institutions.
So we wait once more. After I had presented my clinical persona to everyone, dark fears return in the quiet of the room. I am just staring out the window at the highway. Tish asks me what I am thinking. I reply that my mind is just wandering. She moves to the bed, sensing that my musing is dark. She tells me that I need to be able to talk to her. When she asks what I fear most, tears come immediately to my eyes and I reply “Dying too soon.” Tish tells me that she knew that is what I was feeling. She said that she was afraid too. I suddenly feel relieved. I have been trying to protect her, hiding from her information about my prognosis. During our diagnosis session I had tried to speak obliquely about prognosis. But the graveness of this illness had not escaped Tish. We talked for a while about struggling with this awareness. Some light had come to my personal darkness.