La La How The Life Goes On


Posted on: May 6, 2010

So I’ve begun a new treatment for my ongoing GVH called ECP: Extracorporeal Photopheresis. If you could see my skin (which you won’t ever again, believe me) you would see it looking very cellulite-y. It’s not cellulite, however, but the fibrous tissue under the skin pulling. It is pulling because my overactive T-cells are killing it. The major concern, of course, is that in short order I will find it harder and harder to actually move my arms and legs because my skin will “freeze” over the fibrous tissue. This will, as you can imagine, disable me rather handily, which is clearly not the desired outcome. Which is the reason why I’ve been taking such giant doses of prednisone, to try to calm the damn T-cells down. Unfortunately, (as Travis Tritt said about the whiskey), the prednisone ain’t workin’ anymore. So something has to be done, and ECP is the next thing to try before we have to get toxic.

There are few side effects to ECP, beyond total effing physical exhaustion…from sitting? The Dada says that I should not minimize the effect on one’s body of having one’s blood removed in small increments, centrifuged, returned, removed and returned again over six rounds, then having one’s white cells bombarded with UV light and then reinfused. I suppose he’s right. Even if it doesn’t hurt, it’s still a bit of stress on the body, perhaps, to do that 6 times every day for three days straight.

In any case, I’m meeting the most interesting people in my adventures, including the doctors. All the MDs who visit me are from pathology, so they are already the few, the proud if you know what I’m saying. One guy is a cross between Penn (or is it Teller?–the one who talks) and Hugo from LOST. He is so socially awkward that I absolutely look forward to his visit every day, so entertaining is it to see him struggle mightily to do the part of his job that he obviously finds most difficult. He’s very nice, extremely bright, and I do feel for him, but listen–I’m sitting there for 4 or 5 hours. I deserve some entertainment, and sometimes I have to create it for myself…so if maybe I have to make a lame joke about whether T-cells can develop melanoma, which I know he’s going to take seriously and answer earnestly, well, please believe that I”m going to do it.

Unfortunately the joke’s on me come leavin’ time, because I have to put on my Dana Farber-provided SPF-100 sunscreen (I’m not kidding) and old man Ambervision (TM) glasses to go out of the building. Apparently having UV light pumped into your body makes you more susceptible to UV light outside. Whaaa? This just sounds wrongheaded and misguided, but all the “MDs” as they call themselves, if that’s their real name, swear it’s true. So I walk in to the appointment looking normal and walk out like a beekeeper. No, a octogenarian beekeeper. No, an octogenarian beekeeper with dreadful and deplorable fashion sense.


2 Responses to "SPF-Umpteen"

just read you blog about ECP, how is it going, is it working, i had lukemia back in 2006 and had a BMT back in september 2006, i also have chronic gvh with tightening of the skin, have tried everything and just gets worse, i am taking 20 mg of prednasone daily and it has not slowed it down much, i am waiting for my insurance company to approve my ecp, did you have lukemia?


Hi Michael,
I didn’t have leukemia. I had aplastic anemia, the genetic variety. Boo Hiss. I’m on 30mg of pred too. Sucks big time. ECP is going well. 8th week–no results yet but they’re not expected until >12 weeks anyway. I’m hopeful though. How are you?

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