Chronic, Bizzarro World

Well, that is just a fun word right there. Chronic. Chronic Graft vs. Host Disease. After a recent visit with my GVHD doctor, she let me know that the team in Dallas has tried just about all of the available treatments, and that I should go visit a fella in Seattle to see what he has to offer. Just hop on a plane and let him look me over once. I am a pretty compliant patient, so I immediately started looking at airfare for two. I then realized that this made no sense for us right now. One of many problems was simply getting on an airplane when I start having major trouble breathing around 5,000 feet. Also, a person that knows my history (and has read over this Seattle fellow's journal articles) will do what is best. I am happy with my treatment for now. I went from there to my photopherisis therapy that does something to the tcells in my blood using UV light. It became quite clear that this was too taxing on my body and my family with the trips to Dallas and the subsequent days of recovery. We just were not seeing the results that we hoped. So, I made plans to cancel any further trips and cut the treatment short.

In the next few days, I went to my local eye doctor. Fearing the worst, I put my chin up to the microscope. "Not too bad." What? That was the best news I had heard in a long while. Not only have I maintained vision, but the eyes actually look less dry. My tear duct plugs had fallen out, so he put some more in for me. "Just keep doing what you have been doing." My eyes have been so much more comfortable! So....I did not cancel the photopherisis. Maybe God is using it after all, and we should stick to the plan.

So, how am I feeling? Decent. I'm able to do a few things here and there, but my eyes and my lungs as well as just feeling run down require me to sit a lot more than I would like. I feel unsteady, but my appetite has picked up. I might have to start taking medicines to make me eat more if I keep loosing weight. It is the opposite of the way I have lived most of my life. I keep crackly packages close at hand to grab if there is any inkling of hunger, and my husband is on his toes to grab me a real Dr. Pepper for coughing fits. Bizzarro world.