Iowa City

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.

Louie

Peaches

Years and years ago I read an article in the newspaper. It was a question to a columnist. A woman had gone to a ladies luncheon... back in the day when there were ladies luncheons. And at the end dessert was served. Dessert on this day was fresh peaches served with cream. The woman received her serving of peaches and cream and after she had taken a bite she noticed in the bowl off to the side, a small worm. You know, the little inch worm looking kind that invade fruits. She didn't know what to do. She didn't want to cause a scene with the other ladies. So she quietly ate her peaches and avoided the area with the visitor.

So her question to the columnist was, how do you handle a situation like that? What should she have done? The columnist replied that the woman certainly didn't need manner lessons from her. The woman couldn't have behaved in a more mannerly, kinder fashion. She caused discomfort to no one.... and she didn't eat the worm!

This woman , who I have never known, has become a standard for me. Yesterday at the doctor's, things were mainly on keel. There is a pesky problem with the kidneys. His number is up.. It could be he hasn't been drinking as much water, or too many sodas. One possibility is that his kidneys are getting tired of his anti-rejection drug. Then Dr. Silverman checked his mouth where he has been maintaining some Graft Vs. Host disease. Again, everything seems about the same. The kidneys could also have a touch of GVH, but we are going to choose to not eat that worm. Today we begin getting a rest from the Tacrolimus and it is time for me to go on sentry duty so to speak. Any worsening of his GVH symptoms and the Dr. wants to know posthaste. GVH in the organs is deadly, but then so is slowly killing them with drugs.

Mac will try to double his water intake. His kidneys will feel fresh and happy. Our worst fears will be unfounded. We will hope that this is just another corner that we are turning, finding our way as far from this disease as we can get ourselves.

We choose peaches.

louie