Deeply Sweetly Grateful

Written 9/16/2011

There are more questions than answers as I go down this road that deals in the world of science and medicine. There are tests taken and data recorded and numbers crunched and statistics, lots of statistics. It is sort of like watching political commentary or a football game. My doctor called today (she is a kind heart and a sharp mind) to talk about, well, me.

“How’s the rash today?” she asked. I told her that is was fine, a little cranky last night but that we were using the steroid cream generously. When I say “we” I mean some of my team who help slather my skin when I’m having a “flare” which is what I’m having. The fight between my skin cells and my immune system is riled up because we’ve reduced the amount of immunosuppressive steroids that I was taking.

I asked her a simple but somewhat catchy question which was, if this current treatment doesn’t produce the results we want, what are we going to do? I got choked up asking the question and she answered that we would seek out other clinical trials.

I have to qualify for a clinical trial. Kind of like a college application. If I fit the criteria they have set for the test then I’m eligible. These trials are done everywhere. See how the questions abound? Do I want to go to Seattle or Memphis or who knows where for the trial.

While this stage of the game was not completely unexpected, it sets up new challenges. A follow up email from the doctor said we could continue with the current regime if that was the best bet and that we would talk about it more on Wednesday when next we meet.

This blog spot is an amazing grace because it gives me a place to put these thoughts down and give the skinny to those who really want to know what in the hell I am doing! That’d be you.

Bottom Line: I feel good. I’m a little underweight and have been encouraged to eat all the calories I can, not a bad deal. I still have no taste buds or sense of smell which is bittersweet I guess. My days are full of music and laughs and lots of love and support and I am deeply, sweetly grateful. 

My hope is to turn all the sentiments that wash over me into a few songs and make a new album! Good to have goals while you’re living life deeply in the moment.