Thursday, May 15, 2008

Well, That Was Weird

So my first day out. Weird, scary but also good.

Good because I surprised Bambina by picking her up at preschool. That was awesome. Met her teachers (as much as you can "meet" anyone while surrounded by tons of kids and parents and trying to move everything and everyone out of the room). But that was cool.
Me heading toward Bambina's class

Weird and scary for a variety of reasons. First, I had forgotten that people have individual odors. Not bad odors. Just...odors. I was sitting in the DF waiting room for my shots without my mask on (having a minor panic attack every time someone walked too near me or whenever I heard someone behind me cough or sneeze), and every time someone walked past me I was completely overwhelmed by the smell. A full year of total-block masks will do that to you, I guess. I felt like that 18th century French guy in that book, Perfume, who was particularly sensitive to the odors of others (and who ended up killing them to make perfume from their pheromones, but let's leave that for another post, shall we?). So that was weird. I also decided that women wear waaaay too much perfume. I think I now understand what people who can't hear feel like when they get a cochlear implant and all of a sudden they can hear everything with no immediate ability to filter sounds out. It was all too much too much in a short period of time.

Second, I still like a wide berth in my dealings with the public, and having someone I don't know walk right next to me freaks me out. Yeah, it's partly their smell. But it's also just my heightened vigilance about what they're spraying on me as they go by. Like, if I can smell you after you go by, what are you leaving behind?

Third, I'm in a bit of a nebulous area, healthwise. I'm a year out from transplant on the calendar, but my immunosuppressive medication dose (albeit a different cocktail) is the same as it was in December 2007 thanks to the GVHD. So even though the calendar says it's time to start easing myself back into life, the reality is that I'm still not normal and won't be for probably another full year. And that's assuming my current megadoses of immunosuppressives keep the GVH at bay. Otherwise who the hell knows how long it'll take.

Which leads to the fourth thing: I don't actually feel that great every day, to be honest. All these meds have side effects that are some times harder to power through than a transplant. Which is something I never imagined saying. As evidenced by the fact that this post is going up around 5am, you can guess that I'm still getting about 3 hours of sleep a night. And my new med for the GVH (the one that causes diarrhea) is absolutely causing all manner of intestinal distress that makes it a wee bit difficult to really go out (now that I can) and do too much stuff. Because public toilets are still off limits. And, just to be a total complainer, there is no joy in eating. I had a nutrition consult the other day because I've pretty much eaten white rice, bananas, applesauce and white bread for two months. Got some good recommendations for adding protein and variety, but so far none have stopped the internal distress. So I think I'll be more able to enjoy my putative "freedom" once the GVH is under control, my meds have been reduced, and I can even wrap my mind around the notion of not just sitting in a restaurant, but being able to eat something other than a white bread/applesauce sandwich.

But, hey, as I always say, "every day after a transplant is a good day." And yesterday was. And so today will be. Now if I could just get some sleep, some happy poops, and a reduction in my NASA-sized lunar moon face, it would be a great one.


BJT said...

YEAH!!!!!! Can't wait until we can join in your celebrations!!

Vigilante said...

U Rock, E!