More non-news

Every day the regimen changes. Today Dr. Ganguly took away the one small pill I was taking so now it's a handful of very big pills twice a day.

My liver enzyme counts are extremely high which is the reason for all these changes. I am taking no anti-fungal right now. My lungs are healthy and I am being careful so hopefully this will be okay. The anti-fungal drugs (for the pneumonia) beat up the liver in an unending chain of events. So we're looking for the weak link.

The liver takes a beating from the radiation that prepares for the transplant, so you want it healthy going in. Last week in the hospital one of the numbers fell into the normal range (less than 70)-- today it is 400+ I've no idea why. And you know I have asked the question!

The IV antiobiotic has been changed and the orders are to take it every day until transplant. That means: visit the clinic every day. That's my job. They dropped the threshold for giving me blood. Usually I get blood if my hemoglobin is under 7. Now they will let it drop lower. This is okay because I am fortunate enough to not have any scary symptoms until it practically disappears. And because repeated transfusions are causing some of the liver distress.

Yesterday when I arrived at the clinic the nurse told me all these changes and I felt a little frustrated because I didn't know about them. I made her a list of questions on a paper towel and she went round and got answers for me. Fortunately we both were laughing about it.

Then there is the matter of the chelator drug. The latest story is that you can only get it by mail from one of three authorized vendors. Apparently it is new enough that the drug company is keeping close tabs on patients who take it. I still do not have it in my hands, but I'm thinking it's going to cost closer to the doctor's estimate of $2000/month instead of the social worker's $500/month. I was recording drug costs today and in the first half of this year I have spent one-fifth what I spent in the last 4 months of 2008. It all becomes relative I guess.

Finally the concoction labeled "Magic Mouth" (lidocain/mylanta/benedryl) to prevent the mouth sores from returning in the absence of an anti-fungal drug. Mouth sores are nasty things and I hope I never get another one. I had them very bad last week after no anti-fungal medicine over Memorial Day weekend.

So, still no news of a transplant schedule. Still lots of talk about it. Still some pain in the eye, but better every day. (The eye is really non-news--inconsequential even.)

Meanwhile, Conor and Annie are coming for a visit tomorrow with Harrison and I can't wait to squeeze that little guy. Sisters Janice and Lori, and sis-in-law Suzanne have worked at my house this week getting it ready for Cathi to live there. They moved my office upstairs, cleaned everything and pronounced it "SANITIZED."

I will spend the night at my own house Saturday night and see how I feel. Frankly I am very nervous. Partly because the last time I spent the night I woke up sick and spent 32 days in the hospital; and partly because M&D's house has become sort of a haven for me. I realize how fragile this feeling good is and I want to keep it around.