Day 81--Havin' Some Fun

Torger's tacrolimus levels have been really up and down these past two weeks while Dr. Tse has been away. Managing the tacrolimus (immunosuppressant) level is really important, like fine-tuning a recipe with just the right amount of salt or baking powder. We need enough to allow a little GVHD to develop, but not so much that we encourage a lot of GVHD or send Torger into kidney failure. When Dr. Tse's in town, he calls me after every lab visit to discuss whether we should adjust his levels. Generally, we want to keep his tac count in the 9-10 range. A couple of weeks ago, it hit 18 for a few days, and was still at 11.2 on Monday of this week. By Wednesday it had dropped to 4.3, and yesterday it was at 3.7. I tried paging the doctor on call and left him a message, but I never heard back. So I'm just doing what Dr. Tse and I have been doing for the last three months...upping the dosage gently to try and get it back into the normal range. Dr. Tse expects me to be keeping an eye on this stuff while he's gone because he knows that no one is as attached to Torger's case as he and I are. He's told us both as much several times, but now it's really hitting home. After labs yesterday, Torger got his sutures out from the most recent biopsies. One of the biopsies was of a spot on his left temple that Torger's had for quite a while, which has concerned us both since long before he had leukemia. Dr. Bailey, Torger's dermatologist, reviewed the biopsy results with us and said that the spot did come back as pre-cancerous. Fortunately, they removed the whole spot so he's not worried, but it galls us a little because Torger has been asking doctors in Fort Collins about it for nearly five years and they've just blown off his concerns. (As did the first doctor we consulted when Torger felt sick and was bruising so easily last spring...the doctor who didn't even run a blood test but just prescribed antibiotics. Can you tell I'm still ticked about that?) All of this is an object lesson in the importance of trusting your own instincts about your body and getting a second opinion.