Monday, July 11, 2005

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:)

4 Comments:

At July 12, 2005 8:05 AM, Anonymous Anonymous said...

Hang in there Justin, disappointing I am sure but be glad you are in a place that is able to take care of you. If you were in Dawson Creek they would likely tell you to take an aspirin and get some rest. They just don't have the expertise around here. The only thing they know how to do for sure is write prescriptions. Lord knows you dont' want anymore of those. Keep on strumming.

 
At July 12, 2005 3:35 PM, Anonymous Anonymous said...

There is lots of time for Marathon's, focus your energy on getting better now and you will be ready for anything. Bring it on! There will always be a marathon, heck your just finishing one! Keep on jogging and strumming.

 
At July 12, 2005 8:55 PM, Blogger Unknown said...

Hey, there is an urgent need for a Vietnamese bone marrow donor. Please pass the word:

http://tinyurl.com/dsmaj

Thanks.

PS My wife had GVHD and it was definitely tough. But after all you've been through, you can weather this challenge. Hang in there!

 
At September 02, 2005 10:39 PM, Anonymous Anonymous said...

Hi Justin, I actually found your blog by searching on Team in Training...I'm planning on running Honolulu for TNT this year. Sorry that your health will prevent you from making the trip out here to the Islands. I will add your blog to my favorites and read it regularly to remind myself of who I'm training and raising funds for. Aloha!

 

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