Katie's BMT Updates

See? They do everything together. I remember friendships like that, connections so simple and pure that they make sense. Their games are made out of anything, a toy, a plant or word and it becomes a narrative they repeat over and over and share until they tire of it and come up with something else. It's a beautiful thing to watch two kids who play well together, watching them bond through mutual respect and their vivid imaginations.They take each others ideas and build on them -- it's electric.

In adulthood, we tend to let that pervasive sense of curiosity go and whimsy goes by the wayside. When was the last time I rolled down a meadow, grass and flowers in my hair, giggling all the way down? However, I do remember playing freeze-tag in Golden Gate Park after a party with me and a bunch on 20-somethings. Now that was exhilarating. Acting like children. It's an important thing. We should do it more than once in awhile. Going to that place of silliness not only strengthens your sense of clarity, self and what's right in the world, the giggling and hilarity that ensues lifts your spirits and reduces stress.

I love having a 3-year-old in my life to remind me these things.This week alone, I've been asked why there are no Mommy Long Legs spiders and why there are no wiener kitties, like there are wiener dogs. I've explained the difference between today, tomorrow and yesterday. I've pointed out what makes a Bumble different from a regular bee and I've even told tell him what it means and feels like to be lucky. Every time I try to explain something new and relate it to something in our world, I learn something new for myself, or something I'd forgot. And it's fun, at least until it escalates into the "Why? Why" and "How come ..." stage ... Then it gets annoying. That magical moment poofs away and then you're left with a manipulating toddler who's decided he's going to force his agenda using the mouth of a 16-year-old teenager.

Anyway, I still like to close my eyes and try hard to get a glimpse of what it was like to hang out with some of my long lost BFFs in grade school. They were special times because I guess you believed you'd always be so close. You didn't know that you could grow apart, move away or just plain hurt each other. A good friend makes it with you through all that, that good friend is gold. I have a few special ones out there that I don't get to talk to as much as I should.

See, this is what I do all night when I can't sleep. Ponder and muse on past and future (hopefully not too much), listen to Midnight Baseball on the radio and watch consecutive episodes of "House" on TV (Yes, I know I swore I'd never watch a hospital drama, but this is like medical mystery meets CSI and the protagonist is an ass. I'm really enjoying it, especially since I've already had a lot of the medical procedures and I get that it's totally over-blown, especially when they went after the bone marrow biopsy with a drill. (Hello I've had like 5 of those and it's all about the Demerol, the lidocane and right stick nurse. I've never seen no drill).

At Clinic today, I started Rituxan, which probably accounts for my behavior ... I feel tired, but can't sleep, a little anxious and I sneeze. I checked my blood sugar and it's up, 277 two hours after meals (isn't good). I did a little look online and learned Rituxan raises blood sugar (and causes sneezing) in some patients, but it's pretty rare. I figure I'll monitor the sugar tomorrow, make sure it's real before I call it in. I did have a lot of sweets in the past few days ... but hey I'm up 4 pounds, so hey!

The good news is that my bloodwork looked really well before my first Rituxan treatment. My platelets held their own at 33 (even though I did get a transfusion on Sunday) and my red cells seem to be hanging in there, too. My doc thinks, and so do I, that perhaps my body is righting itself on its on. But it's too early to tell so our best plan is to keep with the Rituxan because it can only help. Time will tell, but it is looking good for our family trip to Bear Valley. There had been talk about me only going half the week, coming back for clinic and then driving up again. But if my platelets and red blood cells get stable by then, I could make the whole trip! I can even buy a bathing suit and go into the water when my family goes to the lake. I am so pleased.

Last thing, I don't think I ever mentioned that they confirmed I have Evan's Syndrome, which is an autoimmune disorder that attacks healthy platelets and red blood cells. The other good news is that this problem is only happening amongst the new graft marrow cells and has nothing to do with leukemia. Well, OK, it could have played a role in making it happen, weak immune system, yada yada ... but regardless, it's treatable ... and that's what we like to hear!

All for now. Midnight Baseball is over and I gotta try to sleep.

night night ...
Katie