Chapters 13,14,15
Chapter 13: Normal Vanished
In the next month our schedules vanished. Planning anything for the next day vanished. My life revolved around Mike’s symptoms and appointments. Did I buy the chicken feed? Did I find soccer cleats deep in the jungle of the front hall closet? I don’t remember.
Mike survived the last infection, but it left him weak, exhausted, and in need of frequent hospital visits. As soon as his bilirubin levels were low enough, he got into the clinical trial. This was good news because anything new to try felt like a sprinkle of hope. It also meant we went from daily trips to Johns Hopkins in Baltimore to daily trips to see Mike’s new doctor at the Lombardi center at Georgetown hospital in D.C.
The experimental treatment meant a lot more monitoring. When his new oncologist, Dr. Pishvaian, explained the risks and side effects of this treatment, they sounded horrible and included possible blindness. During the appointment Mike was bloated and needed a paracentesis; he was tired and rail thin everywhere but his abdomen. I could tell he was using all his energy to sit up straight and listen, but still, he was slouching. “What if this doesn’t work?” I asked, because it didn’t sound promising or hopeful to me. Dr Pishvaian said, “If it doesn’t work, we will try another kind of chemotherapy. And then another. We will keep trying.”
They looked at each other like two guys who understood each other. This was why Mike loved him.
I thought, Wait! When are you going to send him home to die? When does this stop? When do we slow down? When does he get the ending that Michael Keaton got in ‘My Life?’ When will he make the videos saying goodbye? When will we have the good-bye party in our backyard?
