Thursday & Friday, October 27 & 28, 2011

I am trying to think of a name for this roller coaster ride that we are living. Any suggestions? We had expectations of a steady improvement in bladder issues but it toggles back and forth. With another infusion of cidofovir today, perhaps Ron will find more relief over the weekend. He also had a transfusion of platelets which should help with the related bleeding of the bladder lining. We did spend the entire day in the cancer clinic, so we knew to use a wheelchair rather than the walker. The doc and PA visited us both in the morning and afternoon, discussing test results and symptoms Ron has shown with mental confusion. It was a definite consideration to hospitalize him today, but in the end we decided to go home. The doc made a few adjustments, and overall, both of us rest better at home. I would stay in the room with him if he were hospitalized.
Ron is not able to text right now, and I have heard a lot of messages come in on his cell phone, so I will try to get to those tomorrow and read them to him. He has difficulty with the remote control as well.
Ron did have an ECP light therapy treatment today; his skin and gut issues are mostly resolved. He is making progress, and his dosage of steroids decreases each week. He had his evaluation by a physical therapist, and she will be back Monday morning for his first session of guided exercise. We are adding more items to Ron's diet. Grilled cheese and hot dogs have been popular this week. Lactose intolerance is a common post-transplant problem, so he takes lactaid prior to eating dairy. He does not eat much, and has lost close to 40 pounds. His weight fluctuates 10-15 pounds with retained fluid variations.
Enough for tonight. Tomorrow will be a better day. I understand now how crying and laughing are closely related. I have found myself laughing in situations where I find my reaction inappropriate. It must be another coping mechanism.
From Ann Arbor, love to all.