Monday medical 10-20

This morning I got up to go to my doctor's appointment, expecting that I would start the 5th round of Vidaza and maybe get set up for a transfusion tomorrow. That is not how it worked out. First, my local doctor is very concerned about my total lack of positive response to the Vidaza and how my counts have gotten so bad. I told him we had faxed the records from when I started treatment to Dr. Raza in NYC and that I was expecting a phone call from her. She was the one who recommended the treatment schedule of 5 days/week and to try this for a year.

My platelets were down to 2 and he didn't want me to leave without getting a transfusion of those. It takes a while to get that set up, but then platelets transfuse relatively quickly. I hate getting stuck for the IV, but thank goodness for HemiSync. The stick wasn't too horrible. When it was done we left the lab and went to Abbey's apartment so that she and I could go shopping for the red washer and dryer. As I was getting out of the Explorer, I was feeling all itchy. Turns out I was getting a horrible rash all over my body. Darn! I just had a reaction to platelets two weeks ago and am not amused. Back to the blood bank where I had to get another IV. I'd already had the max dose of Benadryl for a while so they started me on a steroid - solumedrol - and I was there for another couple of hours. The rash begin to slowly subside so they let me leave around 1:45p.

By this time I was too sleepy and out of it to go shopping. Abbey and I are going to try again on Wednesday. (The doctor here wants me to get another blood test Wednesday morning and be prepared to get more platelets then. Plus he also wants to talk with Dr. Raza.) So I came home and fell asleep.

Just a few minutes ago Dr. Raza called me. She has looked over all my records and is also concerned that not only am I not showing a response to the Vidaza, I appear to be getting worse. She wants me to have another bone marrow biopsy and have the results sent to her as soon as we can get this set up. This will be discussed between the two docs either this afternoon or tomorrow and when I go in Wednesday we will see about setting it up. I will have to be being transfused with platelets while this procedure is done.

The other thing I talked with my local doctor about this morning was having a port-a-cath inserted. The frequency of all the sticks is beginning to wear on some of my veins. To do this I will have to be transfused with several units of platelets during the morning and have the port inserted that afternoon. This won't happen for a couple of weeks, though. He says we need to let my bone marrow rest for a bit and see if it can recover at all to start producing blood cells again.

All in all, this was not the best news. We are now in a holding pattern as I have more tests and we try to decide what to do next. But looking at the bright side, I get to avoid a bunch of sticks for a couple of weeks. Except for the bone marrow biopsy and I think I will do that in the hospital and be put to sleep for the procedure. Thank you all so much for your care and concern. Please continue to think positive healing thoughts for me. I'm focusing my intention and energy on finding the best path to healing.