It’s such a beautiful Saturday here in Indiana. Sophie and Isabelle are over. We’re all struggling from this cold. My poor immune system seems to just barely keep it in check. I may try to decrease my prednisone starting this week – 5mg alternating with 2.5 mg. I started at 80mg more than three years ago for GVHD.
I want to continue to add to my Cancer Blog Links as it seems to be the most visited feature on my site. Yesterday I added a section entitled “Blogging Resources” – a short list of fee and easy sites to set up a blog or blog-like site. We used Caringbridges since my transplant. It sure made it easier for frinds and family to go to the site for daily news instead of multiple calls to the house. In fact I still have a site there, rather inactive – www.caringbridge.org/dpyritz. Later, as this community grows, I would like to write about why we blog, the role of blogging in cancer patients’ lives, etc.
The other project I am working on, and will be posting about shortly is the Cancer Book Club. I think our first book will be “The Last Lecture” by Randy Pauch. I thought we might divide books up into chapters, finishing each book in a month. On Mondays we can have discussions. I am even working on a hotlink to Amazon each month for those wishing to purchase. Well, more on this later. Let me know your thoughts.
Now I will continue with my journal…
Journal – December 2001
I felt pretty drugged the rest of the day. I was not able to eat much dinner. Tish and I watched TV in the dark. She was struggling with wanting to spend the night. This had been a difficult day for me but not a crisis. So I told her that I would be all right and that she needed her rest. It is advice that I give families all the time. Go home and be assured that I will take care of the person you love.
As she left, I heard voices in the hall. I slept fitfully, constantly aware of wanting to guard my IV site, not being comfortable in the electric bed, not thinking to ask someone to shut my door. I was relieved but tired when morning came.
Debbie was my nurse again. Tish helped me take a shower. Then we walked in the halls. There is a solarium on the floor with a good view of the cityscape. I put fresh linens on my bed because that seemed more normal to me than having someone else do it. I volunteer, half seriously, to help make beds or collect breakfast trays
Ray came and said that my infusion reaction was, of course, expected and should abate and disappear in a few more treatments. Then he announced what seemed to be a daily dollop of bad news. He had run a CMV titer that was positive. CMV stands for cytomegalovirus. Much of the population will test positive for it. But I, with my impaired T-cell immune system, am dangerously vulnerable to CMV infections. Much like persons with AIDS, I am liable for CMV-related blindness, hepatitis and pneumonitis. Indeed the doctor shares with us that most persons with my disease die from CMV. He had run another quantitative CMV test, a Di-gene test that requires an infectious disease physician to properly interpret. He will arrange for a consult later today.
Today my CamPath dose was to increase to 10 mg. The drug arrived. I was given my pre-medications then I floated away. I had already asked Debbie to have the flushes drawn up and ready so that in the event of another reaction I would not have to wait. I could hear Tish and Debbie talking together. Debbie is engaged to be married and has sensed stability and a sense of sharing in Tish and my relationship. Music plays in the background. The next thing I know Debbie is disconnecting the IV and telling me that the infusion is over. My fever was up and I feel weak and woozy but no rigors or chills. I thought then that I had it made. But it would be weeks before I again escaped treatment without the chills and rigors.
Late in the afternoon Dr. Judy Streit, my new infectious disease doctor, introduced herself. I had talked with nurses about who would be good and her name was mentioned. She was in the same practice with the infectious disease doctors that I have collaborated with over the past decade, Steve Norris and Bob Baker. We exchange cards. Judy takes my medical history and performs a physical exam. She then explains that the CMV “Digene” test showed me to be in the low positive range. She would like to test me again in the morning and then every two weeks.
If the number were elevated tomorrow, she would like to start me on an anti-viral medicine called Ganciclovir, probably starting Christmas Eve. This drug must be given IV twice a day so that I would need a home care nurse. It is somewhat caustic to peripheral veins so I would need to get a PICC line, a temporary IV line inserted into my arm and threaded to a large vein near my heart, the superior vena cava or SVC. This line could stay in for 6 – 12 months. Good news – I could have labs drawn from it and could received future CamPath doses through it. Bad news – it increases my chance for infection.
Ganciclovir is a powerful drug with potentially dangerous side effects. It is cytotoxic, like most traditional chemotherapies and thus poses health risks to the persons mixing and administering it. In the person receiving the drug it can cause renal failure, profound and sometimes irreversible neutrapenia (neutraphils are the other indispensable part of my immune system, the main part that actually works to protect me now), cardiac arrest, stroke, pancreatitis, GI hemorrhage, and a string of other conditions, including ironically, leukemia and lymphoma. The test is run on Fridays. Judy instructs me to call the office Friday afternoon and to tell her staff that they need to page her with the test results. This is what I needed – something new to worry about, something to brand me as more and more dependent on the medical system.