That was a line from an old M*A*S*H episode. Hawkeye said that he got raves about his ranting. It would be nice... to get raves that is, but today I don't feel like I can hold it in anymore and I have no doubt that my rant will not be rave worthy.
Last wednesday was yet another trip to Iowa City to see the oncologist/ transplant DR. Mac is still on an every month schedule as a result of the flare up of the graft -vs-host a.k.a. rejection. This time the physician's assistant mentioned that perhaps he needed to think about getting Social Security. Said it like all you need to do is go out and pick it up like a sunday paper. Irritated me! Then because they are soooo fucking helpful, a social worker was sent down to talk to us.
When the Dr. came into the room, Mac asked her about her thoughts. She wasn't going to say...asked him what he thought. He said he didn't know. Didn't know what to do until he knew what she thought. Again the Dr asked, "Well, what do you think?"
This was not exactly helpful.
Finally she did cough up that the statin medicine that was started as a result of the heart attack could be causing the problem. This seemed like a good thought as his other GVH symptoms had improved. So, we are left hanging. We do not have a diagnosis for what is happening in the liver. Last month the paperwork that was sent home with us said they thought it was CMV (cytomegalovirus). This month the Dr. was totally non committal and the PA said she thought it was GVH in the liver, which you really, really don't want. In the meantime, social security is hanging over our head like a toxic cloud. We were told to just "go ahead and try for it and see what happens". How's that for brilliant advice? They have no definite diagnosis. They didn't give us a form or letter stating medical necessity. The social worker didn't know jack shit about social security. All they gave us was dread.
Mac looked up some numbers. Possible amounts. We are currently running about $3500. short each year. We make it by trying to wisely use our tax return, hay money and the kids help us out more then kids should have to. If things are as bleak as some think, then we will be even further behind on Social Security. If that is the direction we travel, then there is a good possibility that we will lose the little farm.
I keep thinking about my extreme survival measures... buying a lotto ticket. It hasn't worked yet. Dammit! The other fall back plan was to beg help from Ellen Degeneres. These are my ridiculous thoughts. I am taking small comfort in them. I don't know what else to do. I am finding no hope, no plan based in reality. There is nothing concrete to stand on. My great hope has to rest in that the doctors know nothing, but my fears are also that the doctors know nothing.
For right now, we have decided to ignore them and to just continue. We will put our heads down and push our shoulders to the load and do our damndest to keep living.