Katie's BMT Updates

My freedom from the hospital was great ... while it lasted. On Monday night, we went to Yankee Pier, a kid-friendly fish restaurant in Larkspur. Ian picked me up from the hospital and we went home to pick up Ron. Zach and Marlene were at the park, so we were going to meet them at the restaurant. I was very excited to see Zach, but when we got there first, we had to wait. The short wait was well worth it. The door opened and there was little man carrying a big bouquet of burnt-amber tulips that he picked out himself. Then, once we were all sitting at the table, he said "The family is all here ... nobody's missing." It was a splendid reunion.

The next day, Ian took me to the new California Academy of Sciences Aquarium that just opened in Golden Gate Park. It was impressive! Even though Zach wasn't with us, I could totally see why he loves this place. Since I just got out of the hospital and still on the weak side, we could only stay about an hour. I didn't get to see the famed rain forest (the line was too long), but I did see the white alligator, sting rays and many other fish and reptiles.

So, how did I end up back in the hospital? Starting Monday night (yes, the night I came home), I started running low-grade fevers. The fevers would start in the evening and be gone by morning ... until Saturday. Saturday, I got a fever earlier than usual and, by dinnertime, I was in the "call-the-clinic" zone. Though not alarmed, they wanted me to go to emergency and get checked out. It could be a relatively indolent virus that would resolve itself on its own ... or it could be a nasty bacterial infection. Best not to take chances, though.

To make a long story short, they decide to keep me overnight ... and then for the next day, to "be on the safe side." On Sunday night they find it: Enterococcus. Enterocococus is a type of Strep bacteria (no, nothing to do with a sore throat) that becomes a villain if it gets in your blood stream. The docs are guessing that I picked up mine during my last visit, during my surgery or through my IV.

I've been here for four days now and there is talk that I will go home tomorrow. But it's not without drama ... During my stay, I found out the hard way that I am allergic to two antibiotics, Cetepine & Zosyn. They both give me rashes and Cetepine makes me extremely nauseous (which is why I haven't written sooner).

Let's see if I really get out -- and stay out -- tomorrow!

cheers,

Katie

Hey, just wanted to drop a quick note to let everyone know that Katie's out of the hospital. She was released last Thursday evening. Since then Katie has suffered from a low grade fever most days and is feeling pretty crappy in general, fatigue and nausea being the main symptoms. She's on the mend but it's a really slow road to recovery.

We visited clinic today and the doctor decided to put her back on entocort, a steroid she was on before the gall bladder fun. We're starting to suspect that GVHD is part of what's causing Katie's discomfort and this should help mellow it out.

-ian

 

It's been about a week since I've come home from the hospital for the third time in the last four months. It's starting to feel very anti-climatic. I hate upsetting everybody. I hate upsetting Zach (who will tell random people "Mommy's in the hospital" - a real conversation stopper, let me tell you). I also felt double beat down - and I won't lie - a little hopeless at times. What's going to happen next? I have a very large shoe collection and any of them could drop, I suppose.

On top of my mental mountain of doom and gloom, I felt terrible. I had a fatigue that was relentless. Nausea ruled my world. I even vomited a couple of times; I never vomit. My body was left looking like a cross between a battleground and that of a junkie. I have black and blue remnants of blown IV lines left by earnest blood draw attempts. My veins are notoriously challenging; I always tell the nurse "they're deep and they move" and the nurse usually sighs. I also have a new constellation on my belly: four points that could be connected to form a haphazard version of the "Little Dipper."

Today, though, this moment and yesterday I am feeling much better. I went to clinic on Monday and they put me back on the steroids (Endocort) and - poof! - my nausea is gone. I am very puzzled by this; I didn't expect it to happen so quickly. There are two other possible variables: A great new nausea drug called Zofran, which is expensive and dispensed in small quantities or a particularly productive visit with my therapist. Wow. I am kinda routing for the mental breakdown because I really like Zofran and, if the steroids are already working, that means I may still have the dreaded digestive GVHD. (The reason I find this option so devastating is that if I turn out to actually have digestive GVHD, we will hold off on tapering my Tac, which ultimately slows the course of this whole bone marrow transplant thing.) And I am so sick of shaky hands (side effect ala Tac). You know I can't even cut my own nails? My writing is so horrible that I have to have other people address my letters so they'll reach their destination. Try putting on a necklace. Getting peas into your mouth with a fork. Fun stuff.

Good news, good news! There's always good news, even in the greatest of miseries. My hair is really growing. I actually combed it today, although I felt a lot like Hilary Swank in "Boys Don't Cry" (I didn't use any hair gel, though). And, I am no longer dairy-free. I feel bad because some of you sent me some great literature about why consuming dairy is bad for humans and the environment - and I felt very noble for awhile, what with my soy milk, my soy ice cream and my soy-sucky cheese (I never did find the right one). But, hey, what the hell, I like ice cream ... and cheese ... and what the heck do you do with cookies without a little milk?

Well, that's the news. I go to clinic tomorrow, so everything could change, ha ha. But right now I am just fine.

Yours in haphazard hospital journeys, where the linens are scratchy and the food can stand up on its own,

--Katie

There's not much to report (thankfully, yes?). I went to clinic on Tuesday and everything is the same, except my weight, which is plummeting dangerously close to an unhealthy BMI. Apparently, the GVHD is revving up my metabolism, so I have to increase the calories. It would be a dream come true, if I felt like eating. To make it easier, I eat a little bit all day long -- the highest calorie foods I can find: nuts, cheese, dried fruit, pasta, ice cream, cream-on-the-top yogurt and, of course, chocolate Ensure shakes. It feels a little weird when, up to now, I've closely watched my weight, tempering what and how much I put away. I loved to eat.

Also my mom made a surprise visit this weekend from Oklahoma. We spent Sunday together and even went to my brother's for dinner. We hadn't seen each other in two years, so it was nice to catch up.

More good news! It looks like Zach's making the move to give up pull-ups to go pee and poop in the potty full-time. We are all very proud and excited.

Sorry there's not much to report, but I wanted to let everyone know I'm getting stronger every day. I still often feel sick at night and go to bed early, but I've taken up walking again in the mornings. I'm hoping for an equally uneventful post next time ...

much love,
Katie