Saturday, June 27, 2009

GvHD

When I had my first transplant, I was diagnosed with very mild GvHD of the scalp and skin. I was able to keep it under control with occasional applications of steroid cream and moisturizers. With this transplant, I've had a little more GvHD. My knuckles are larger than normal due to GvHD of the joints, and I don't think they'll be returning to normal anytime soon. I've been wearing my wedding ring on a chain around my neck with the intention of having it resized one of these days.

My body is covered in tiny scaly patches thanks to GvHD of the skin. The largest patch is on my left leg and is about the size of a tennis ball. It looks like a reptile's hide and no matter how often I moisturize, it's always there. My hair hasn't come completely back and you can see my scalp through the small amount of hair that I do have. Throughout the day my skin itches in one spot or another and there are moments when I can't ignore it.

While we were moving, I was out in the sun a lot and noticed that the exposed skin tended to break out in a red rash that would dry out in a few days, then flake off. This is most prominent on my forehead and occurs whether I where a hat or not. I'm also very sensitive to heat and if I start to get hot, it feels like there are bugs crawling under my skin. If I can't get cool fast enough, I start to itch from head to toe and it takes forever to go away. The other day I had to walk across a sunny parking lot and my back and shoulders felt horribly sunburned. I was wearing a long sleeved shirt and was only in the sun for a few minutes. I expected the skin to be beet red since it was so uncomfortable, but when I looked, it looked perfectly normal. It still hurt, though.

I'm doing my best to stay indoors during the sunniest parts of the day and only go out very early in the morning or toward dusk. I know there are other GvHD sufferers who have to deal with much worse and I'm not at a point with mine that I feel the need to go back on steroids. I'll discuss the issue with my transplant doctor in July, when I see her next. If I absolutely have to go back on the steroids, I will.

As for the house, the only boxes left to unpack are in the office. It's mostly books, so they can wait. We still need to assemble some beds and hang mirrors and art. Etsuko still hates Akiko and is still hissing at me off and on. Some of Akiko's tests came back positive for parasites and Etsuko has to be treated for them as well, just as a precaution. I'm sure this has further endeared me to Sookie. Since Akiko hasn't been altered, I'm being treated to a new phenomenon involving male cats laying around my front yard singing. There's one very handsome boy serenading my pretty girl as I type.

Nancy, to sate your curiosity about the cat names, that's all Chris. When we adopted Sookie, I wanted to name her Bacon, but Chris had loftier ideas. He thought that since she was a siamese, burmese mix she should have a regal name to suit her. My line of thinking was that everyone loves bacon. :) We did a little research and settled on Etsuko. Since Akiko is also a siamese mix, Chris wanted to give her a name in the same vein as Sookie's. I suggested Umeboshi. Can you sense a food theme? Chris liked Akiko and so Akiko she became. I have a few more food names in reserve and I'm hoping to win out if there are any more kitties in the future. Although, now that I'm thinking about it, this is probably pretty similar to the discussion my parents had about naming me. I ended up being named for my father's mother, thank God. My mom wanted to name me after a famous figure with a dodgy reputation outside of a handful of countries. The same number of letters and just as easy to pronounce.

6 comments:

Daria said...

Ann,

I erased a comment by mistake ... I think it was from you ... regarding a cancer blog to follow.

My silly fingers ...

If not, just disregard this comment.

Daria

Ronni Gordon said...

Sorry about the GVHD, but I'm glad it's mild. It sounds like overall you're doing great!

Wiley said...

I agree---everybody loves Bacon. Take care of teh GvHD skin stuff. We're pulling for ya!

LacubriousOne said...

Wow,I can't believe you've got nearly everything unpacked that quickly! We moved into our house 19 years ao and I think there are still unpacked boxes in the basement!

Susan C said...

I'm still trying to figure out that name your mom wanted to call you.

Lea Morrison said...

gvhd just represents eating up those bad ole cells floating around. I too have red bumpy spots anytime I amd overheated and suffered for about 6 months. FInally at a year it turned into a rash and at one my year follow up at the Hutch we did the steroid push and I got treated for cgvhd and have been on a slow pred taper since. My ability to cool myself down and no rash has been wonderful and a marked improvement from last year. You know all about the roids....
xo-Lea