Not what I expected to hear

Yesterday Walt and I went to the clinic for the "Consent Meeting." This is a meeting with the patient, doctor, transplant coordinator, and [usually] family member where we get the lowdown on the transplant procedure. We hear the risks in frightening detail. We get info about the protocol the team has chosen for the transplant, the dates. We sign and move forward, usually in a few days.

Yesterday's meeting started with Dr. Ganguly saying "This is not a consent meeting." Immediately I knew the transplant was delayed again. They want another clear bone marrow biopsy before proceeding and they want the liver counts to drop closer to the normal range. It was VERY unexpected given the meeting with Dr. Abhyankar on Tuesday and various remarks through the week.

Extremely disappointing.

Dr. Ganguly speaks in absolutes. "This may kill you. But if we don't do it you will die for sure so it's worth it to do this procedure." There is no sugar coating, no soothing, and not much talk about what is positive. It was difficult to sit through without crying. Actually it was difficult to sit through without screaming "What happened between Tuesday and today?"

Apparently what happened is the liver counts skyrocketed last week. They do seem to be coming back down nicely but that is not resolving the knot in my gut.

The team was also stunned by how good the pulmonary function test was. Beth, the transplant coordinator, showed me the results and all were over "100% of expected" ranging from about 116% to 156%. These results also added to the uncertainty of how to proceed.

The discussion yesterday was that I might have either another Reduced Intensity Transplant or a fully ablative transplant. The chemo preparation for an RIT would be twice as tough as the first one last September and the protocol different to give the donor cells more opportunity to kill the recipient cells and take over. The fully ablative transplant is on the table because my lungs are in much better shape than anyone expected. (I keep telling them I was a competitive swimmer.) Both types will use Walt as a donor again.

It will be a long week while I get a bone marrow biopsy on Tuesday and learn the results on Thursday. I've been working feverishly to get ready to be in the hospital for several weeks and my momentum detoured on a side rail yesterday. I have daily clinic visits to get the antibiotic but they will only draw blood every other day. So on alternate days I have a 30 minute visit. This is good, but I confess to missing the social interaction of the clinic. I did not realize how important it was to me.

I have a lot of movies to lose myself in. Am in the middle of a very good book. Still haven't walked on the treadmill enough to listen to all my old CDs. Shoot, I haven't even finished sewing the border on that big quilt I made in 1986 or so.

My house is ready for me to live there but I do not expect to move there with the time to transplant so short. I have been going up there for small tasks and it does feel good to hang out in the house.

So another curve ball in the penultimate inning. Hopefully the pitcher will send me a fast ball that I can hit out of the park next time I'm up.

Cathi