Biopsied, transfused, and still wondering

Joe drove me to Boston today. I was glad to have his company, and it helped undercut my anxiety. Still, with the way things have been going, I took a pre-visit half an Ativan (.5 mg) in the car.

Thanks to everyone who called, e-mailed or commented on the last post. The support in general really helped, as did the suggestions on how to get my mind off my worst fears.

The counts were not better today, unless you consider the hematocrit, which was 25 after Monday’s transfusion. This was still below normal but high enough to avoid a transfusion. My white count was .6, which is quite low. I knew my platelets were very low, due to the red pinpoint dots (Petechiae) that were making my legs resemble a pointillist painting. Not to mention the blood (sorry!) that kept building up around my gums. (“Not to mention” is one of my pet peeves. I always think, “If you’re not going to mention it, then why did you?” But, hey, it’s my blog and I’ve had a hard week and I feel like breaking a rule.)

I packed a bag, expecting to get admitted into the hospital. This might have been a reverse way of trying to stay out of the hospital, because when I was admitted six months ago, I didn’t take a bag. Well, I was not admitted. I’m sure that the bag didn’t have anything to do with it, but, whatever.

As I’ve said, I really have no interest in knowing my numbers when my platelets are extremely low. Today I found out by accident. I went into the infusion room in search of the lunch cart, and I bumped into my nurse from the other day. I told her that my blood counts weren’t back yet, but that I thought my platelets were still low. “Well, they were only 2 the other day, so I’ll just get the order going,” she said. Two? When they were 164 (normal is 155-410) just a few weeks ago? Another place not to go, as in, “That tree that looked so sturdy yesterday went and fell on me today?”

After my bloodwork and while I was waiting for my appointment, a group of high school carolers wearing Santa hats and reindeer antlers came into the waiting room and started singing the standards. “Tis the season to be jolly,” they sang, along with “Rudolf the Red Nosed Reindeer,” “Silent Night” and others. Sometimes a harpsichordist or other instrumentalist plays in the outer waiting room that is usually not so packed. This is where these kids belonged, where people could wander over and listen if they felt like it. It was through no fault of their own that they ended up crammed in almost on top of the patients; somebody put them there in what seemed like an exercise in cheering the patients up.

But you could see that many, like me, were having a hard enough time keeping it together. One woman moved further away. I took the other half an Ativan and opened up Joe’s early Hanukkah present to me, “Born to Kvetch: Yiddish Language and Culture in All of its Moods,” by Michael Wex. I'm just starting the book, which begins with a discussion of the satisfaction that Yiddish-speaking Jews long ago derived from kvetching, or complaining: “Kvetching becomes a way of exercising some small measure of control over an otherwise hostile environment.”

OK, forgive me, I kvetched, but only in my head and now in print. I was extremely on edge. I just wanted to stay inside my bubble.

I talked to both Melissa and Dr. Alyea today. They said the low counts could still be from the virus and drug reaction, or, as Dr. Alyea had already said, they could be due to the same thing that happened before: some part of me starting to push the donor cells out. So, for all my talk about not being hit by a bus in the same spot, it actually might happen.

The chimerism from recent blood work, showing the percentage of donor, is still not back. After I got my platelets today, Melissa did a bone marrow biopsy, which will provide a clearer picture. I began to relax a little when Dr. Alyea started discussing possible options, which I will leave to a later post. I think some of us get to a bump in the road and write ourselves off. Using one of my late father’s favorite words, I told them I had been imagining my demise. (My father kept a folder labeled, “In case of my demise.”

Dr. Alyea said he did not picture my demise. “I picture you playing tennis with a high platelet count,” he said.

I am so drained from worry and anxiety that I think I can let it go for now. There are options. My demise is not imminent. A storm is coming, and I have a date with a friend to drink coffee and watch our dogs play in the snow. That should be fun.