Tomorrow Mac has to go see the transplant oncologists in Iowa City. The only thing that keeps him there is that he has the smallest amount of graft vs host. I do mean the smallest amount. Just a small lumpy bit on the interior of his mouth smaller then the size of a quarter. Oftentimes not even noticeable. I have read about treating the GVH with gancyclover and being done with the issue. So far, Iowa City has dicked around with this for over a year. Dragging it out with miniscule doses of steroids. To me, it seems that they are maintaining the problem, not treating and curing.
As we get close to the Iowa City visits, the stress in the house is palpable. Little things set Mac off. He doesn't want to eat. He just tries to bury himself in the internet or exploding aliens on one of his games. It's hard. I try to explain to them that their inaction is making the situation worse. They do not acknowledge me there. They do not believe that after thirty-three years I know what makes him tick. They do not believe that I have the capacity to learn and to keep up with various treatment options. Over there he is just another cog in the wheel... it's a big place. They refuse to take advantage of the fact that I am his walking chart. I've got the details in my head, and I have never seen any individual over there whether on the floor or in the office, check HIS chart. They update his meds but the med page on their computer program has an automatic reset or something so it is typically wrong. That usually gets them upset with me and I get told EVERY F**KING TIME that I have to be sure to give the proper dosage and I get lectured.
I don't want to go. I don't want Mac to go. I don't want to have to be there and have trouble breathing and have my stomach hurt. I want it over.... really over this time. I want Mac to be okay. I want to finally be able to live in my "happy place"
Tomorrow Mac goes to Iowa City and I will be afraid until it's over.