Entry

So what is going on? As for the norm nothing at the moment. It's a bright sunny day out, but I can't go outside. The pills I am taking make my skin more sensitive to light radiation, the UV lamps in the booth, but also to the sun, so for twenty-four hours I am supposed to stay indoors, and out of the light... Well not light, but the kind that burns anyway. I am not a total vampire who dwells in the pitch black cave. These light therapy appointments are really quick, I only fry for about two minutes, as everytime it is increased by about thirty seconds. I hear I'll have a nice tan as I keep going, I guess it's a good thing... I have been more red than anything so it will be a change.

With the prednisone still very high, I think that my face is starting to get a little bigger again, not too much cause it wasn't down a lot from before. Another week on the high dose before I see the doctor again, hopefully it will be able to come down after that, but I won't cross my fingers.

I took in a little bit of the Stampede, it's a crazy place... Spend money, smell all the sick greasy food that you want to eat so bad, but you know in your heart that it is wrong, and absolutely disgusting... And see the sights. Mom and I went to Tim McGraw, it was such an awesome concert, really rockin' so that was a highlight. Cara and shane are here for a couple weeks to keep us company and add a few more bodies to the household. Guitar playing around, working on some songs, getting better I think, we'll see.

Justin:)

Strange Disease...Wee Eww Wee Eww

As luck would have it. I mean what luck, there is no such thing. Inevitable circumstances that happen because of another cause maybe not always known, but nonetheless occurs. I have a new disease. The unfavorable, but right now non-threatening as it is spooked up to be prior to transplant. Graft vs. Host Disease. Don't get me wrong, this is serious, I have developed a rash like state over much of my skin, like a sun burn my skin turned to a more reddish shade, has been itchy, and now is peeling like crazy. Flaking like I have severe dandruff... Something Head and Shoulders isn't going to cure. Chronic GVHD has varying degrees of severity, skin problems are the most common (20-60% of allogenic marrow transplant recipients "contract" the disease), but liver function, gastro-intestinal, and lung problems can also erupt. So far, I am lucky, and a hypocrite for using luck as an excuse.

Plans to come home this past weekend was over turned by this new discovery of another annoying set back and delay. Along with disappointment came more drugs, maybe the tapering began to soon and thus caused my body to become attacked by my new cells, whatever the reason for it too begin just after the one hundred day mark. Prednisone down to 30mg, was again brought to a skyscraping 100mg. After almost a week of this new dose my sleeping patterns have begun to go backward, waking up numerous times during the night again. Of course this is all to prevent things from getting worse, and I realize that, but it just seems one step forward is just going to make me take another three backward. Does it end, eventually, but it's slow. I will be seeing a dermatologist to get prepared for starting light therapy, a procedure that is supposed to help my skin by treating the crazy blood cells that are attacking my skin. Hopefully with this treatment I will again be able to go down on my dose of prednisone and maybe that will be all for problems.

I have been able to start strumming a few song on the guitar a little bit. Some actually sound like songs, it's amazing. Run-walking most everyday, my strength is coming, unfortunately the doctor said that I should probably wait for marathons though, December is a little too soon... I didn't want to go to Hawaii anyways. But that's all for now, maybe I'll take less than a week to get here and type it out again. Until then...

Justin:)