Tuesday, July 7, 2009

This is what I do for fun

Katie drove me back and forth to Boston yesterday. It worked out well for both of us. Diane came and took her for a walk in Brookline, then she came back and took her own walks, popping in and out of the infusion room to check in with me.

She's been playing a song from the opera "Hansel and Gretel" that has gotten stuck in our heads. Various translations give it different names; in hers it is called "Brother Come and Dance With Me." As we approached Dana-Farber, I began singing my own lyrics to the catchiest part of the song: "This is what I do for fun, this is what I do for fun, fun fun fun, fun fun fun, this is what I do for fun."

When I went to get my blood drawn, the nurse opened my files and said something about "antecubital fossa." For a brief moment I panicked at this new word. "What are they looking for now?" I wondered. The nurse explained that it was just the term for where they usually draw my blood – the depression at the bend of the elbow. Oh.

I knew my platelets would be low, because I was counting petechiae (tiny burst blood vessels) again, and I was right: They were a pathetic 4. I was surprised to learn that I also needed blood because I had just gotten it a week ago and I felt OK. My hematocrit was a borderline 25. My white count, at least, was stable.

I saw Melissa before I went into the infusion room and she said that she and Dr. Alyea would come in to see me. "He has some ideas about why all of this is happening," she said, referring to the low platelets and rbc. Panic time again: "What KIND of ideas? Bad ideas?" I said to myself. I kept it in, though, and went off to get transfused.

When they came in, Alyea said my body was obviously chewing up platelets and red blood cells. He said it will probably help when they take me off of one of my drugs, Prograf, but it's too early to do that now. He said he was putting me on a low dose of steroids for the GVHD found in my esophagus, and that this might help with my platelets and rbcs.

Neither of my scary projections came true. I wish my mind would leave me alone.

I closed the place down again at 7:30 p.m. Katie drove back with no problem. All in all it was fun fun fun.

7 comments:

PJ said...

Ronni, I so know what it's like to live on the tip of anxiety, where every little word or sign seems ominous.

They will figure out why you're chewing up those cells--inflammation can certainly do it, so the steroid could be the trick.

I'm waiting to hear from Dana-Farber about transplant prep. Here I come.

Ann said...

I will be humming that song for the rest of the day. Things sound like they're moving right along. Hopefully the steroids will help with the GvH and you won't have to take them for too long.

pam said...

Dearest Ronni,

don't know the tune, but fun fun fun will be running so to speak through my head all day...

Always heed Alyea, all yes! and those petty-chiae will eventually subside, and the counts will be better, and you shall be well and off and running, soon...
xop

Daria said...

It's all so scary ... isn't it.

Nelle said...

Ronni,
This week I found I have a pneumonia in the lung that was a problem seven weeks ago. They thought they saw a nodule in it then, the ultrasound didn't show it but now same lung and I am concerned. My lungs were shielded from radiation with lead shields but I am concerned about that. I have no energy and think of you and how small this is in comparison.

Anonymous said...

Wow. I remember when your low counts would really freak you out. Now it's like, "Yeah, whatever; a bag of this and a bag of that." You actualy sound cool and controlled in a funny way! Aleya is handling it well, he'll figure it out. I'm glad they picked up on the GVHD and jumped on it right away. Way to go! Be good

Anonymous said...

Wow. I remember when your low counts would really freak you out. Now it's like, "Yeah, whatever; a bag of this and a bag of that." You actualy sound cool and controlled in a funny way! Aleya is handling it well, he'll figure it out. I'm glad they picked up on the GVHD and jumped on it right away. Way to go! Be good