Katie's BMT Updates

My computer is dying, but I am not. It has long pauses between web pages, the letter "V" doesn't always work and the cursor randomly flutters around the screen or jumps between fields on web pages. As I type now, it takes a second for the actual letters on the screen to catch up.

I have no excuse for not writing. I have been recovering from ankle surgery for the past four weeks and so have had plenty of "down time." What happened to my ankle, you say? I didn't have an accident. I had PVNS -- Pigmented Villonodular Synovitis -- a condition that is basically a build-up of gunga on the joints. For the last ten years, it's been "that bump on my ankle" and it didn't bother me. But steroids and other immunosuppressant drugs aggravated the problem and I started to experience a stabbing pain in my ankle every now and again ... One of the joys.

I've never been on crutches before and I'm here to tell you it's harder than it looks. But now, after four weeks, I am both cruising and so sick of hauling them around. Also, I can't drive. That means I am home a lot more than usual and I was home a lot before. I haven't been away from the house since last Saturday. No joke.

For lack of other stimulation, I've been spending more time in the garden, literally watching seeds grow into plants. I have never had a green thumb (I tried to grow mint once and, believe it or not, failed), but Ian's parents have planter boxes filled with lettuces, radishes, carrots and strawberries. Ron gave me a private lesson on planting and, gosh darn it, my plants are growing! I shouldn't be so proud, but it's wonderful to see something so bright and green poke out of the soil.

Speaking of life, it looks like I'm going to have a long one. I'm still a little too thin and have a sundry of other little issues -- numb toes, random stomach aches and whatnot -- but I can't believe how good I feel!

Life can really throw you a curve ball sometimes. Two days ago I celebrated my 1-year bone marrow transplant anniversary (my "other" birthday, if you will). Aside from the ankle and still being on crutches, I feel pretty good. I'm definitely looking forward and can smell the scent of long-term health like one might smell fresh baked bread. I haven't had a piece yet, but the aroma is wafting all around me. My mouth is watering.

Then, just like that ... Guess where I am? No, you'll never guess because I would've never guessed in a million years! I'm back at the hospital. GROAN.

After my ankle surgery, I noticed a small patch of red dots on the side of my right knee. And because I watch a lot of CSI, I recognized it immediately: Petechiae. In case you don't watch CSI or any other gory crime TV, Petechiae is a small round red or purple dot on the skin caused by small hemorrhages (capillaries, usually) in the body. At my next clinic appointment, I show it to the nurse practitioner. He agrees that it's petechiae, but doesn't know what it could mean or what to do about it. It's small, only one, we'll watch it.

Two weeks later, undressing to take my bath, I see that both of my legs are covered with the telltale patches and individual little dots the size of a pin prick. There are also some purple splotches, where it looks like the writer left the point of the marker on the page too long. I take my bath, examining myself for more peculiar dots. It turns out that there are a few wayward splotches: one on my back, one on my left arm, one on my left hipbone. But, aside from those, the petechiae seems to like my legs.

I get out of the bath and call the Clinic. I leave a message with my nurse practitioner, who usually always gets back to me by end of day. After dinner, I decide she must not have been to work today. Should I call the after hours line and ask about it?

I don't want to. I am seriously thinking that this is no big deal, that it's some GVHD thing that comes and goes, like the redness on my face. But I do call and, when the doctor calls me back, he says I should go to the emergency room for a blood test. "Just to make sure you're platelets are OK."

Platelets are the part of your blood that help with clotting. Without them, a minor cut will continue to bleed or capillaries will burst inside your body as you go about your daily business. A normal range of platelets falls between 150 and 145 thousand. I got mine tested and they were 9. I'm getting admitted.

I will probably be here through the weekend while they try to get my platelets up, stable and figure out the cause. As I type, I have had one infusion of platelets. Now they will test me every six hours to see if the platelets are holding. So far I have had two tests: 49 and then 40. The doctors are happy so far.

There could be many causes, but most likely this has nothing to do with my leukemia. Most likely, it's fallout from the transplant. Whatever turns out to be the cause, from what I understand, the treatment is the same. I get platelets when I need them and also some Rituxan (a monoclonal antibody chemotherapy that searches and destroys only bad cells). And it will stop, at some point my body will start making and retaining platelets on its own again.

As the doc says, "This is just another bump in the road."

I don't have to tell you how sick I am of these "bumps" in the road ... I don't have to tell you how sick I am of these "bumps" in the road ... I don't have to tell you how sick I am of these "bumps" in the road ... ... ...

much love,
Katie

The doc visited my room today and informed me that I have Idiopathic thrombocytopenic purpura or ITP. Usually having a name for something or diagnosis is comforting. Now that I know what it is, I can deal with it. But ITP is different. The "idiopathic" part of the disease means that they really don't know what causes your immune cells to stand up and wage war on your platelets.

The docs are also pretty sure my ITP isn't related to leukemia. The theory is that my recent ankle surgery stirred my still-somewhat-immunosuppressed immune system and ... viola! ... Trouble.

So far, I've had one infusion of platelets, which gave me a count boost from 9-40 and they've been on the way down again ever since: 31, 21, 16, 15. I'm now getting Intravenous Immunoglobulin (IVIG) Treatment, a blood product that's meant to help eliminate the bad antibodies. Hopefully my platelets will stabilize tomorrow and I'll be able to go home. We'l see.

cheers,
Katie

I finally got out of the hospital on Wednesday about midday. I thought I would get out earlier, but you know how things flow. First, my platelets seemed to right themselves and at least seemed to be holding, if not going up. Then my other counts drop, mainly my hematocrit (red blood cells that give me my energy) and my neutrophils (ah yes, those oh-so-very important immune system cells). Hematocrit is hanging out at 37, borderline transfusion time) and my neutrophils are somewhere under .5, the magic number that defines neutrophenia, which we all know I like so much.

On Tuesday, the docs decide to keep me an extra night to get a transfusion of red blood cells. The nurse gives me my pre-meds (Benedryl and Tylenol to help stave off reactions) and goes to order the blood. Eight hours later, they still haven't found a match for me because of those unruly antibodies in my blood that have been causing the ruckus all along. So I sleep, expecting to be woken sometime in the middle of the night. Morning arrives and still no blood. However, my morning blood test shows a bump in my hematocrit and my neutrophils. No more low red count and no more neutrophenia! That's right about the time they find the right blood for me and the docs decide that I don't need it anymore. I get to go home.

All in all, my latest hospital adventure was little more than a blip, and from what I can tell, an isolated event, not a prediction of the future. It does scare me, though (and frustrates me more) when it happens. I've gotten so far along in this game that I'm starting to feel like I don't have many chips left. Seriously, I will share with you, I was sitting on that gurney in the emergency room, with queer red splotches covering my legs and I just found out my platelets were nine. I wondered, kind of matter-of-factly, abstractly, outside of myself ... Is this it? Is this the beginning of something big? And, of course I asked the doctor if I was going to die (oh yes I did) and he assured me I was not ... Then I see "anxiety/depression" scrawled along with five or six other things in the "diagnosis" box on my chart.

I should share some good news that I found out along the way: 1) I got my bone marrow biopsy and the preliminary results show NO CANCER in the bone marrow. Horray! Now all I have to do is survive all the stuff I did to get rid of it. 2) I got an MRI on my hip joints (they suspected Avascular Necrosis (yeah, sounds bad, is bad) and everything is clear. I just have to strengthen that area, it's weakened from steroids, etc.

Well that's all for now ... More doctor appointments next week and I'll be back with more news. You are all in my heart, my friends ...

much love,
Katie

So let me tell you like it is. My mom is getting better. She had a little set back with her foot, and now she's on crutches, but Gpa has a set of crutches that I can use, so I can give Mom a run for her money.

My Gpa takes me for swimming lessons every week, usually on Mondays. He makes this big deal about my kicking and using my arms. Grown-ups get excited about the most trivial things. One thing I love about Gpa is that he doesn't talk down to me. I've been trying to understand what a clutch is. He says it means more than one thing. Geez. He said the next time we're in the garage, he's going to show me. He and I built a cup holder for Mom's crutches. Once Gpa tells me what a patent is, I'll suggest we file one.

Dad is so awesome. After dinner, sometimes takes me for a walk on Ring Mountain, the preserve behind our house. He also takes me to school on the bike. The only thing he doesn't like about me is when I have the urge to lick his face. It really bugs him.

Grandmamma took me to her school one day so I could see how well her students listen to her. Sometimes I don't like listening to my teachers, so I wanted to see what happens at her school. The kids were really nice to me, but Grandmamma was a little peeved when one kid was showing me the globe and told me that Cuba was a bad country. Now she says she has to play me some music from Cuba so I'll know that any music that sounds like that can't be from a bad country. She also took me to the zoo, but we were so slow (observant is the word she used) that we only saw a few animals. The only time I cried was when a seagull ate my hot dog while Grandmamma was running inside to get napkins.

Mom loves to play trains with me. She builds the best tracks, shows me that every engine has its own voice, and doesn't get tired of playing with me, even when I become a storm and destroy all the layout.

Well, I could say a lot more, but this is my mom's blog. Okay, one more thing. I'm learning how to tell a joke. I ask, Why did the man throw the butter out of the window? Then the grown ups say, I don't know, why? Then I say, because he wanted to see a butterfly. Then they start laughing and think I'm very cute. It's actually a little annoying, but how much can you complain when they say, "You're the cat's meow."
Now, I get that they like me, but just what the hell does it all mean?