Katie's BMT Updates

Ever have one of those days, when you feel this sense of dread? For no reason, not really? I find myself feeling suspicious, looking-over-my-shoulder-in-a-dark-alley suspicious. There's a lump in my throat and a hollow spot in my tummy. I furrow my eyebrows. I purse my lips. I go around checking, making sure all major appliances are off. Crazy, yes I know I'm crazy.

Well, I'm having one of those days. The funny thing is that, whenever I've felt this way before, nothing "bad" happens. Bad things fall on you when you least expect it, like a bum gallbladder on your birthday.

I have to apologize (again) for not writing sooner, but I was getting my computer worked on so it runs better. Then there's the holiday stuff and the house stuff and the preschool stuff. Oh, and don't forget the birthday stuff! Zach turned 3 this past Thursday. There, those are my excuses.

For Christmas, we kept things low-key. We stayed at home, ate well and just generally hung out by the fire (in my mind, the best kind of Christmas). The only thing missing was Marlene's cousin, Barb; she couldn't make it and she was missed.

The next day, we headed down to Turlock for Christmas #2 with Ann and our "adopted" family. I really missed my Dad a lot here and kept thinking of what he'd say. (Lately, I wonder most about what he'd say about Obama.) We had the traditional rib roast, Yorkshire pudding and Pulla bread. Then we played the blind elephant present exchange. The highlight was that Ian ended up with a can of Clamato energy drink (and a sundry other scary, scary energy drinks). Then a funny thing happened: All the men in the room started daring him to drink it. Then, some money hit the table. And then some more money. Well, gosh darn it if my husband didn't chug that Clamato for $25.

New Year's ... I celebrated it "East Coast Style" ... in bed by 9 o'clock. I think it's probably the first time in my life (at least in memory) that I fell asleep before midnight. I never go out (too many people/too expensive), but usually we get together with friends or something. The big thing at the Buono home is that, every New Year's Day morning, Ron, Marlene, Ian, Hilary and some others ride bikes across the Golden Gate Bridge for brunch. Not everyone goes every year, so that someone drives the van, eliminating the return ride home.

We kept Zach's birthday low-key, too. We got pizza for his class at school on his actual birthday and then Peter, Jenni, Zoe and Maizie came over last night for hamburgers and hot dogs (Zach's favorite food). Last time at clinic, the nurse practitioner reminded me that I need to stay away from children (I'd told her I'd been venturing into kids' birthday parties and basically got slapped on the hand). It's just so hard when you're feeling so good and so normal. It's like getting into the lake (which I'm not supposed do, either ... Remember: nothing fun): First, you put your toe in (ahh ... that feels nice). Then you take a couple of steps up to your knees ... your torso and then, before you know it, you're swimming ... and you start thinking to yourself: "F*%K that leukemia-bone-marrow-transplant S&%T ... I win! I kicked your ASS!" Then, hours later you're excusing yourself from the dinner table because you just need to lie down ...

Anyway, that's kind of how I've been feeling the last few days ... out of gas. The shaky hands are back, although not as bad as in the past (I can write legibly, only really slowly). I've been Zombie-tired in the evenings. I go to bed early, sleep for a little bit and then wake up bright-eyed and bushy-tailed too early (like 2am, 3am early) . And, I think I've discovered a little GVHD in my mouth. It's like a white film on the inside both cheeks; I can feel it with my tongue. But probably the most disturbing side effect I've been having is short term memory loss ... For the life of me, the only thing I remember about Saturday is that we had leftovers for dinner. Where'd the rest of that day go? And, I've been doing the usual "What did I come in here for?" It just bugs me.

Lastly, I'll update you on my last clinic visit, which was two weeks ago (I get to go every other week now ... Horray!). I can come to clinic alone. I can eat sushi. My platelets are still going down, but again, nobody seems concerned. My liver numbers are slightly up, but again, no one seems concerned. We've decided to taper the Endocort very slowy, which means instead of 14 pills a week, I take 13 ... I even get to pick which dose to axe.

Anyway, all for now.

much love,
Katie