Saturday, April 11, 2009

Day +73 - Stomach virus, or GVHD of the gut?

Happy Easter! This cute coffee art was on my latte last week at Cloud City Coffee, one of my favorite neighborhood coffee shops. We've started our daily walks again, a little earlier than usual at 6:45 am so that Johanna can join us and still get to work on time, and Cloud City is our regular destination. Our friend Jenny gave me a pre-paid card with 10 double-short lattes on it, so I've been using that. It feels good to be walking again.

I'm happy to report that my cold symptoms are 95% gone and my last blood test was negative for the gram-positive blood infection I tested positive for last week. I'm off the IV infusions which is great too, even though the baby bottle infusions were pretty simple.

The bummer is that I've come down with some sort of stomach virus. It started a few days ago and I've been having stomach cramps every few hours and riding the white ivory throne pretty regularly. It's no fun. I'm also experiencing nausea and loss of appetite. It doesn't help that I don't enjoy eating as much knowing that I'll be in the bathroom in half an hour. I'm also experiencing an incredible amount of fatigue. I've been sleeping from about 11am until 6pm every day. It's a little discouraging. The walks have been ok, but I can't go a full walk without enduring painful stomach cramps. And as much as I want to force my body to be energetic, each time I get up it's all I can do to keep from wanting to lie down again. It sucks. Coffee doesn't seem to help either. We reported it to my nurse and he called me in for a stool sample, since frequent diarrhea can be a huge problem since it dehydrates the body quickly. A lot of patients end up back in the hospital or on IV fluids. I've been drinking a ton of water to try and avoid this. We'll know next week whether it's an infection or GVHD of the gut. We're hoping it's a virus or an infection, since GVHD of the gut can be hard to treat and can least for years. On top of all this, I've been suffering from some pretty nasty migraine headaches the last few days, so it's been a perfect storm of miserableness.

I feel like the last few weeks have been one step forward and one step back. Luckily, my blood counts have been doing great which I suppose is the real measure of my success. I guess it's sort of like putting a rebuilt engine in your car and finding that the new engine runs perfectly, but that there are some squeaks and rattles in the rest of the car that need to be taken care of. I think the fatigue has to do with the fact that my body has been busy fighting all these infections and is simply exhausted. The steroids have the effect of artificially pumping me up with energy. So as we continue tapering down the dose, I'm starting to see more and more what my post-transplant body looks like, and it looks like it's pretty worn out.

I can't complain too much, since last weekend the weather was awesome and I was feeling great and took the scooters out for some much-needed riding. It was the first ride of the year and it felt exhilarating. They both started up great, and after a little bit of oil and maintenance and checking the tires, they ran perfectly. I've got 7,500 miles on the Vespa and hope to put on a few hundred more in the next several months.

The next milestone is Day 80, which is when I meet with the attending physicians to discuss my discharge date, usually around day 100. This is when I'll leave the SCCA to go back to Dr. Goldberg, my primary oncologist, to discuss and plan my long-term care. Between Day 80 and 100 I'll be doing a whole series of tests, including another bone marrow biopsy, chimerism tests to see what percentage of blood cells are host versus donor, and bone density tests to see how much bone mass I've lost since the transplant. I can't believe the days are flying by so fast. It seems like I'm constantly filling my pill box with another week's worth of pills.

Here are a few pictures of stuff that's happened recently:

An old picture, but it captures exactly how I felt when I took the scooters out.

Cute picture by one of our favorite local artists, Justin Hillgrove. Johanna says I'm the happy robot and she's the little bird.

Johanna working on the garden.

1 comment:

George said...

Hey my man... We should plan for me and the wife and kiddie to come out and visit some time.

Sounds like you need some company.

Make sure you get that sleepy thing taken care of... I don't like the sound of that.

But other than that... yeah I think this is what they mean living post transplant with the symptoms.

big loves!!