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

Our intrepid explorer

Zach has hit the "Why" stage, that terrible time for parents where every question leads to another question no matter how trivial. It could be tolerated if he asked mostly useful questions, but instead he gets into this loop where he ends up asking the same things over and over again. Finally, it becomes a cacophony of "Whys" and they're coming so fast that he doesn't even hear you when you try to answer.

Well, lately I can relate to all that haberdashery of the mind. Now that I'm feeling better, we have a lot of big decisions to make as a family about what comes next. Figuring out what you want is one thing, knowing what you want is another -- and then there's what you can afford. Ian and I have been kicking around the idea on and off for a few months now: Should we sell our house and move? Hmmm haaa hmmm hmmm (silence on the subject for a few weeks.) If we did move, where would we move? Would we stay in San Francisco or bite the bullet and move to the suburbs? Hmmm Haaa If we stay in SF, where would Zach go to school? Would we be able to get him into a good school (yes, it's ridiculous -- I've have done more for "applying" for preschool than I did to get into college). All these questions and more.

There are basically three different scenarios:

1) Sell our current home and move to a better neighborhood in San Francisco. This is certainly the priciest, diciest option. Ideally, we'd love to live in Mission Dolores or Noe Valley, but most likely what we can afford in these coveted neighborhoods is a condo. Although I am not completely opposed to condos, we may not be getting more "house" than we have, just a better location and a set of distant "roommates," if you will, in the second flat. Today, we wandered into an open house on the old street where we used to rent -- a short stretch of Cumberland at the bottom of Dolores Park. It was beautiful; That street sure makes my heart pound with good memories and the flat was choice, too. It's what they call "finished," in the Edwardian style with bits of character amidst modern flair. It's also about the same size as our house now (the living space) with two bedrooms and one and a half baths. We'd share the yard and there's tandem parking.

2) Move to Marin. Believe it or not, there are deals here right now and we could definitely get more house for our money ... But both Ian and I aren't quite ready to give up urban life (apparently neither is Zach because he's been saying "Can we live in the San Disco house?"). But man, if there was a right time to do this, it would be now.

3) Keep our current house. I love my house ... and when we make all the improvements we need to make to sell the house, I'll probably love it even more. But we've been there nearly ten years now and the neighborhood is just as trashy as it ever was -- and a little more violent, apparently, although I haven't witnessed anything personally. This is also the safest option; Same monthly mortgage and property taxes.

Anyway, we're really going to make the decision within the next couple of weeks. We called an agent; She's doing the numbers, sending us possible listings and taking us touring on Sunday. I'm hoping the information will make the decision crystal clear for us, because right now I feel like a corn kernel in an air popper, visualizing myself in different scenarios. It's driving me nuts, but it's also sort of exciting.

Well, this is where my head is ... You can tell I'm physically feeling better because this is where my head is ...

The health report: My platelets went up (from about 80 to 144) ... Horray! And all the rest of my cells --RBC, WBC, Hematocrit, etc. are hovering just above normal. I'm having a bone marrow biopsy tomorrow, where they'll look for vagrant CLL (results in six weeks). The test is simple, but uncomfortable, which means I'll get Demerol and a nasty bruise. I am also getting an MRI on my right ankle; It's been bothering me a bit sometimes when I walk, creaking and groaning and all that. I don't know how much this has to do with my BMT, but I figure if you're already in the shop ...

My biggest complaints: sleeplessness, fatigue and weakness. The nurse practitioner told me the steroids atrophy the muscles somewhat and I really notice, like going up stairs with a laundry basket is a chore. Lifting Zach forces a full grunt and running, jumping riding bikes is out of the question.

My most coveted moments: Ian and I went out for sushi. My hair is growing so much that it's almost ready to get trimmed. Zach has his first real "buddy," a boy named Carter at school and we like his parents. At dinner last night, Zach announced that I was his "favorite girl."

Well, all for now. Off to get some sleep (hopefully).

--Katie