Vampire Strikes Again

I had another 2 units of blood on Friday. IVIg on the previous Friday and Monday, appointment in Boston on Thursday and blood transfusion on Friday. This is all very complicated and hard to keep straight.

The appointment with Gorson went very well on Thursday. He is positive about the chemo and completely understands why I want to do the treatments up here instead of Boston. We were even able to voice some of our issues with not having been able to get a hold of him when I was in serious trouble and we were told that the person who was responsible for taking his calls has been let go- so that is good news. He was very clear with his current secretary that if I call she is to put me through "IMMEDIATELY"! Hopefully I won't be calling there in crisis again.

So the only hold up on the chemo now is the anemia. We have to find out why my red blood cells are only hanging around for 2 days instead of 120 like they are supposed to. I am not going to get into the possibilities. All I want is for it to be caused by the cyclosporin (called hemolytic anemia- from medication) and have it go away on it's own. The other possibilities are concerning, but I am not going to worry until there is something to worry about.

The plan this week is to go get more blood work done today (it is no wonder I keep needing transfusions- they keep taking all my blood away!), go see the hematologist/oncologist tomorrow and get another IVIg infusion on Friday assuming I can handle it. I am going to be going in for IVIg every 2 weeks (half dose) and then once a month, piggy-backed to the IVIg, I will get the cytoxan dose. So I will only be spending 2 days in the hospital a month, ideally. Then I have to go in regularly for blood work to make sure the cytoxan is working but I am not getting septic.

I will keep everyone posted. As for right now, I don't know much. It is a waiting game. Hang in there everyone. Happy shopping.