Wednesday, October 05, 2005


The First of Many

This week marked the first installment of photopheresis treatments at "Dook." My preconceptions consisted of me having one IV line into an arm (similar to how one donates blood, which I use to do) and sit for four hours. The actual experience was not too much different, except: a) the "stuck" arm was practically non- functional, meaning I couldn't use it to hold my book, or paper on which I was trying to write, etc. and b) I wasn't just left alone but constantly had nurses checking my vital signs, getting me bagels, etc. The worst part of the whole experience was when they removed the tape and pulled my arm hair. Ouch! Otherwise, I pretty much sat there for 4-5 hours on Monday and again on Tuesday.

So what about the negative biopsy results? Well, Dr. Horwitz wasn't around this week, but the best answer I got from nurse Lisa was that the CTCL diagnosis, in his opinion, is inconclusive. But, photopheresis has a low down-side risk and potentially high up-side (i.e. it can't hurt), so we're proceeding with it anyway. After 3 months of bi-weekly treatments, we'll re-evaluate, see if any progress is being made, likely take another biopsy and revise the treatment plan accordingly.

I definately have something going on with my skin. Is it CTCL? Drs. DeBuys, Limentani & Foss say "Yes." Dr. Horwitz says, "I don't know." Maybe we caught it early. Maybe it's something else. Regardless, we're being relatively pragmatic and proceeding with treatments.

Oh, I will be shaving my arm hair before the next installment.

p.s. ASM update: tonsils still in, and staph infected bug bite is gone and fully healed. Rachelle doing OK, but uncomfortable while sleeping.

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