Alyse Booth's Personal Profile
Campath Trial: Week 2
August 16, 2010 (Day 8) — Sixth Day of Campath. Today I went to a special room to inhale aerosolized pentamidine (300mg). This is to prevent pneumocystis infection. The process takes about half an hour. It left a funny taste in my mouth, which they give me candy to cover up.
This morning I have my first 45-minute session with a physician from the Pain and Palliative Care Unit who is an expert in hypnosis. I have been looking for something that might reduce the severity and frequency of my migraines. What an amazing gift to have an expert available to discuss and then demonstrate hypnosis to me. During the session, I close my eyes and listen to his suggestions. I start to see bright colors and feel like I am drifting into a new level of consciousness. He offers to meet with us one more time before we leave. (Steve participates too.)
I also have a Reiki session. It leaves me in a blissful state not unlike how I felt under Demerol.
As Dr. Scheinberg predicted, the Campath reactions have diminished each day. I have no reactions today. This evening we get a pass and have dinner in Bethesda with some friends and relatives. We are lucky because Bethesda has excellent restaurants. It is so liberating to be out of the hospital for an evening.
August 18, 2010 (Day 10) — Eighth Day of Campath. This morning, Steve and I experience the uniquely-designed vibro-acoustic recliners with another member of the pain team. When we finally find the room, we sit comfortably on the recliners awaiting the trainer. He arrives, closes the door, and instructs us in breathing exercises to a chiming sound. We spend about 20 minutes with our eyes closed while a loud vibrating noise engulfs the room and us. When added to the Reiki and hypnosis session, I have periods of greater relaxation here than I can ever remember.
August 19, 2010 (Day 11) — Ninth Day of Campath. I can't believe this is my 11th day at NIH and my 9th full dose of Campath. Tomorrow we will leave the cocoon of the hospital and head back to Brooklyn and then to the Berkshires. I have my second hypnosis session early in the morning. It is wonderful and I promise to follow-up in New York.
After my Campath infusion, Steve and I drive to the Hirshhorn Museum in Washington not far from the Mall. Wow, it is a great feeling to be able to do one of my favorite things — see an art exhibit at a major museum — while I am still receiving treatment. This never would have happened if I had repeated ATG. On the way home, we pick up dinner which we will share with a close friend and celebrate the end of treatment and how good I feel.
August 20, 2010 (Day 12) — Tenth and Final Day of Campath. After ten days of 10mg of Campath administered intravenously for two hours a day, my blood counts show that the drug did what it is supposed to do — it has knocked out my lymphocytes, the white cells called T-Cells that make up a good part of the immune system. However, that alone doesn't guarantee that my stem cells will stop being "aplastic." I am not sure why but Campath, like ATG, doesn't work for everyone. I will be having weekly blood counts in New York City or in the Berkshires and transfusions for as long as required. My counts and transfusion history will be faxed to Olga Nunez at NIH. Before I leave, Donna gives me a bottle of Valtrex 500mg to take each day to prevent viral infections. Since the pentamidine lasts only one month, I will have to take 100mg of Dapsone daily starting in a month until I return to NIH for my three-month evaluation and get another pentamidine treatment.
Dr. Scheinberg explains that at the three-month visit they will test my blood and analyze it for trends. He emphasizes that I should not expect my counts to rise for three to six months and I should not spend a lot of time thinking about my weekly levels. (I know that will be tough for me.) At my six-month visit, I will have another bone marrow biopsy.
I have my last dose of Campath, a bag of platelets, and scurry to have another echocardiogram and get another holter monitor, which I will wear for 24 hours and then mail back. We are in my room packing when another female rabbi shows up. She is a woman around my age and originally from New York City so she feels a special connection to us, especially my husband who grew up in Brooklyn. When I mention that I would like a Hebrew name, she thinks about it for a few minutes and then suggests "Aliza," which means joy of life. I love the name and the good luck prayer she says for us.