Katie's BMT Updates

I didn't have a very good day today ... It's the 2-year anniversary of my Dad's death and I have to say it feels like a regular day -- except for the fact that everything is wrong. Leading up to today, I have been coaching myself, "It's just another day, nothing you need to get upset about" and "You know your Dad would hate it if you spent a day wallowing in his memory. Just make it a regular day. No big deal."

Well, I made it a day all right. I had a whole plan: Ian, Zach and I would drive into San Francisco for the Ferry Building Farmer's Market first thing, for breakfast. Of course, you parents out there know how hard "first thing" is to achieve and so it's 9:30am before we even get rolling. We park, take the circuitous route through a hotel with an escalator, glass elevators, fountains -- one that's the length of the hallway, bubbling and lined with rocks. All these things, of course, are fascinating to a toddler and it's starting to look like we're not going to get to the Ferry Building any time soon. As the minutes tick on, I get more and more raucous with hunger. I'm like a culinary version of The Hulk, "You wouldn't like me when I'm hungry." I suggest we speed things up a bit and Ian, who has seen the Culinary Hulk many times before, swings into action.

The Ferry Building and Farmer's Market surrounding it are terribly crowded, much more so than we had anticipated. So I take Zach to visit the enormous spider and Ian rushes off for food. He comes back with a delicious looking plate of Chilaquilas. I'm about to tuck into this rare treat of savory, yet not necessary healthful dish when I look up to see my oncologist standing there. He's got his one-year-old with him and she's adorable. We chat for a moment and then he says, "I can see you're keeping up your appetite." Slightly feeling like I'd got caught with my hand in the cookie jar, I wanted to tell him it's one-off, that at home I'm eating the diet of a Buddhist (OK exaggerating -- yet my diet is usually very healthy). But instead I say, "Yeah, I'm keeping my weight up." That and I promised that I'd been steering clear of the crowded areas. He went to go join his wife and I inhaled my Chilaquilas.

After breakfast, which is really more like brunch now, Zach wants to explore the pier. Time is running short and I have two goals left for this outing: walk and doughnut muffin & scone ("If you've never experienced the wonder of a [doughnut muffin] ..."). Sigh. I can feel my teeth sinking into one now.

But who can deny a kid his pier time? So we trek the length of the pier.

In the end, I got a short walk and no doughnut muffin or scone (because the stand had closed). These are pretty trivial reasons to get disappointed -- especially when you just got to spend the whole morning with your family -- but when you don't get out much, the silliest things start taking on this air of vaulted importance, like they are the Holy Grail or something.

Anyway, "[Katie's] Terrible, Horrible, No Good, Very Bad Day" continued ... Little things like Zach refusing to nap and me having to listen to him cry. The disappearance of the chocolate -- I know I hadn't eaten one in days, but I finally had a craving. Comic.

What you really want to know, though, is how I'm doing and I do have things to report. I had that Bone Marrow Biopsy last week and the results are in. At clinic on Tuesday, the nurse practitioner said that 4% CLL remains in my blood. Results for the marrow itself weren't in yet, but they should prove interesting. There was discussion on reducing or removing the steroids I'm on in order to stimulate the graft (and consequently make it more active and kill more CLL. The unfortunate side effect of this approach, however, is that it will also make me more miserable with the symptoms of GVHD). But luckily my oncologist isn't worried about the 4% and thinks we should wait. In the meantime, I win another bone marrow biopsy in about two months (the bruise I got from this one is very interesting ... It looks like a bulls eye). Oh, and my CMV has reactivated again, so I'm back on the Valcyte (+4 pills a day) and they've decided to stop the Cellcept (-4 pills a day). It's a wash -- I'm still taking oodles and oodles of pills!

You know, I know my day wasn't all that bad. I just miss my Dad.

much love,
Katie

P.S. Kudos to those who can figure which two popular children's books I referenced during this blog entry. A lame attempt of me trying to be clever ... but oh well. And I promise to write more often.