GVH-ing it up

It's official - I have GVH! Which is good - it's super mild (so far) and they're not even going to treat it unless it progresses. Dr. Smith had told us that a mild case of acute GVH, like a skin rash, was a good thing, for reasons Gus can explain and I can't remember at the moment. :) And mine presented as a rash on the palms of my hands and the soles of my feet, as well as a rash on my abdomen and neck. They thought it might be a drug reaction to Bactrim, the antibiotic I'm on, but they did a little skin biopsy (yuk) and said that it is indeed GVH. My counts are good - fluctuating a lot (I think I have less than 4,000 white blood cells today), but still on the rise, and my liver function is getting back to normal.

The day before yesterday I had a bit of a drama - the worst abdominal pain I've ever felt. It was like people ripping apart my insides - and it wouldn't go away. They're always asking what your pain is on the "scale from 1-10", and I always compare things to the bone marrow biopsy (which rates as a perfect 10), and this was a 9 or 10. It was so awful - it started right when I woke up, and by the time I was supposed to be in IPOP at 11:30, I couldn't even walk or talk, so Gus had to put me in a wheelchair (still in my pajamas) where I curled up in the fetal position and he wheeled me the 1/2 block to IPOP. When I got there I was in so much pain that I vomited - just from the pain. Horrible. They gave me some Oxycodone and hot packs and eventually the pain subsided, but holy moly that was bad. They're not sure what caused it, and Gus and I think it may have been triggered by a cheese overdose (oops) I had the night before (I had had pain the night before as well), so the doctor ordered some tests to see if it was GVH of the gut or something else that was causing the pain. So yesterday I had an endoscopy and a sigmoidoscopy, and they took some tissue from inside my gut to see if it's GVH, but I'm not presenting with any of the major symptoms and I doubt that's what it is. The two tests were surprisingly painless - I was really anxious about them because I was going to have conscious sedation (the same BS they give me when I get a bone marrow biopsy) with Fentanyl and Versed, which is really awful as the Fentanyl makes me violently ill, but at the last minute they decided to just give me Propofol, which was magical! I was totally asleep but breathing on my own, and when I woke up, poof, I was just awake, no pain, no nausea, nada, and I remembered nothing and felt nothing. No soreness, nothing! I wish they'd use that for biopsies - it was seriously so wonderful to just wake up and feel good as opposed to being in intense, horrible pain, remembering everything, and then having to deal with the side effects of the stupid narcotics. Anyway, the doctor found a small ulcer and the results of the biopsies should be back tomorrow or the day after. I even have the day off from IPOP tomorrow - Wendy is here taking care of me, and I'm stoked to play hooky and go to the farmer's market and then to my BMT support group in the afternoon. No IPOP!

So life has been a bit dramatic with the stomach pain and the tests and the skin biopsies (they took a chunk of skin from my upper arm to test for skin GVH, it's kinda gross), and I've still been feeling pretty weak and tired, but they say that's normal and I'll get stronger soon. I'm still trying to maintain my weight but I have to be careful about what I eat (so I don't irritate the tummy), and my stomach is definitely not in a normal state, and I'm itchy from my GVH rash, but my counts are good so that's really all that matters. We should know the results of the 30 day test by next week, and then I have the day 60 bone marrow biopsy which is like this doomsday looming on the horizon.

It's not like there's anything I can do about it or prepare for it or anything, so I just need to forget about it, but it's hard to do when it's just looming there, waiting for me. It'll be a definitive test to show if there's any leukemia lurking in my bone marrow. Which would be bad, obviously. But I don't have any reason to think the results won't be good, as things have been going well, so I just have to keep thinking in that vein. :)

I'm not quite up for visitors yet, but I will be soon, and if things keep on the same track I may be home sooner rather than later. They were going to let me go home for 2 nights (well they gave me 1 day off from IPOP) the other day, but since the GVH tests were pending (if you have GVH you're at high risk for infection or for the GVH spreading), the doctor thought it would be best if I wasn't around the kitties. The only concern is toxoplasmosis, which is normally easily avoidable, but since you never know what's on the kitty itself or what kind of parasites are lurking around, he said "NO KITTIES" and we all know it's impossible for me to be HOME and NOT have the kitties all over me (or me all over them). When I finally get home it'll be Kittyfest 2009, and the doctor said he wasn't at all concerned about the long-term situation with the kitties or anything like that, but that at the moment we should be careful. I'm really lucky to have family housing because it'd be next to impossible to control my environment if I was actually at home!

I think that's it - I'd say that on the whole, things are going really well, with just a few bumps in the road. I'm trying to stay really positive and I feel fortunate that I feel as well as I do and that things appear to be going well. But I don't want to jinx myself. :)