Oy vey, I have shpilkes

In light of my financial problems, the words that I heard coming up from my cellar yesterday were especially scary.

Having finally broken down and turned the heat on a couple of weeks ago, I really wanted heat on Tuesday, a damp, rainy day. I felt especially tired and was not happy to realize the heat on one side of the house was not working. We have two systems, one for the old part of the house (built in 1848) and one for the new part, an addition built in 1992 and comprising my bedroom and the kitchen. The new part was cold Tuesday. I called Bay State Gas, our heating contractor, and a technician replaced a broken part and said we were good to go.

We briefly had heat, but by yesterday it was broken again. So another guy came. After he went down to take a look, I heard these words: "Oh no! Oh no! Oy vey, oy vey."

This is a little like hearing the surgeon say, "Ooops."

I held my breath as he came up the stairs. "What's the problem?" I asked, imagining an expensive repair.

"Whoever put that burner in did a bad job," he said. "They put it in backwards so I had to stoop under the pipes and crank my head around to see the dials and it hurts my back. I'm too old for this."

By the way, he said, my problem was fixed. The previous tech had simply forgotten to clean off the sensors. He didn't look that old to me, but what can you say.

I still had the glow of the benefit, but the week started off so-so. When I saw Dr. Alyea on Monday, he said I was doing very well. He didn't seem concerned that my platelets were back down to 13 (still in double digits, however) and my hematocrit was 22. My white count continued to be normal – a good sign. He said there was an option for boosting the platelets and rbcs, and that's a stem cell infusion from the donor. But he'd rather not do that, because it includes the risk of more – and possibly more serious – graft versus host disease. So he continues to believe my marrow is just taking its time recovering, and that we should be patient.

I know, I know, but sometimes it gets to me, especially after a day like Monday. I got in a chair in the infusion room at 3 p.m. and got my bag of platelets pretty quickly, but there was some glitch at the blood bank and my order wasn't processed on time, so the blood didn't come until around 5:30. Which meant I didn't get out until after 7:30. I was so tired, I called Jim and asked if he could stay with Katie that night. He said yes, so I stayed at Diane's and left the next morning. Diane gave me a nice plateful of dinner, and we had a little slumber party.

I hate to keep complaining about long hours spent at the clinic, because I know it happens to most everyone. Still, the long day, combined with my tendency to catastrophize about the low counts (I won't even go there) kind of brought me down.

I tried to describe my unease to my friend Deb Doner. "You mean you have shpilkes," she said. "What?" I asked. "You know, shpilkes." I didn't get the spelling of this great Yiddish work right, so Meryl and Danny told me, and I looked it up in a Yiddish dictionary. Shpilkes: pins and needles. Zitsh oyf shpilkes: Sitting on pins and needles.

This bit of research caused me to relax a bit. Somehow it's comforting to know there's a Yiddish word for my state of mind.

And, as my father liked to say, "This too shall pass."

Put more bluntly, even though he'd never say this: Stop kvetching.

No transfusions!

This week's clinic visit was a shocker, in a good way. I didn't need any transfusions! I had gone ready to spend the day, and I hardly knew what to do with myself. Well, I can say for the first time in a long time that I didn't spend the whole day at Dana-Farber.

Platelets were 21, still very low but up from 10 to 12, where I've been hovering. My hematocrit is pretty low – 25.3 – borderline for transfusion. But since I've been doing a lot of walking, and even a little tennis, I seem to have adapted, although I am kind of sluggish. The fewer transfusions the better, so they let me go because I feel OK. My white count is normal, 6.6, and my potassium and sodium are about where they should be, although the sodium is still low. I guess I need to eat more potato chips.

I stopped to get a Starbucks and drove home in a good mood. I needed to pick up a few things from the grocery store. I was thinking about how happy I was that I had made the small (OK, tall) coffee last the whole way back, and about how nice it was to feel calm. So calm that I drove right past the grocery store.

I was almost at the library, so I decided to drop in there to return a book that I had in the car. I wandered around a minute and saw all these DVDs, so I asked whether they had one I was looking for. I don't use the library enough. I was pleased and surprised that they said they could order it from another branch and it would be there in a few days.

I had been going through an annoying hassle over this DVD. I know, small potatoes, but annoying is still annoying. Katie and I have been watching "The Gilmore Girls" on and off, and she said it would be fun to watch the whole series from beginning to end. For her birthday, I ordered the first four seasons. I went on Amazon.com and got some of them from the independent sellers who have them used but in good or excellent condition. They're still expensive, but you can get a good price on one that may even be brand new.

We waited for the summer to end, because it's a fall kind of thing. When we opened it, we found that Discs 1 and 2 both started with episodes 5-8 and were missing 1-4. I called Amazon and they said that because it was past 30 days, they couldn't do anything. They said to e-mail the seller, which I did, but they did not respond. I guess my only recourse is to write a bad review of them on the Amazon site. I usually buy books from independent local sellers, but if I want a DVD I usually go on line. Next time, I might not use the independent sellers.

In the meantime, I was going to break down and rent the first season from Blockbuster. But my car had carried me to the library, saving me the trip to the video store. So, how about this for a moral: If you take a wrong turn, you might end up in a better place than the one you passed by. Of course I did end up back at the grocery store, but all was well (Dad's words) because of my good report and my library experience.

Trying to stay up in a downturn

I expected my counts to be low at today’s visit, but I was unpleasantly surprised at how low they really were. After being great two weeks ago, all of my counts are below normal because of my third bout with CMV and because of the drug Valcyte, which is used to treat the virus but which also suppresses bone marrow production. For more details about the "stupid virus," see last week's post about it.

My platelets were 27, white blood count 1.4 and hematocrit 25.2. The transfusion from last week helped somewhat, but not too much. The CMV results take longer than the rest; after last week’s test, the virus was actually gone. When I get the results of today’s test, which may come in tomorrow, we will hope that it is still negative. If so, I can begin tapering the Valcyte. The question is whether anything can be done to stop this cycle from repeating itself. I am totally stopping my last immune suppressant, Prograf, which should help. We’ll see if they come up with anything else.

I need to return Thursday for blood work, a probable bone marrow biopsy and, if needed, transfusions. As soon as I got home today, I gave myself a shot of Neupogen to boost my white count. I’ll give myself another shot tomorrow and Wednesday.

I’m just about six months out, which is where I was when my counts crashed in April, signaling the graft failure which led to my third transplant (the second if you don’t count my autologous transplant in 2003). Naturally I am jittery about the same thing happening again. But my low counts correlate with the CMV and Valcyte, and Melissa said to try not to worry.

Today I also saw my wonderful social worker, Mary Lou Hackett. Of course without revealing their identity, she often mentions long-term survivors who’ve been there, done that. She has said that in the first year after transplant, many people experience ups and downs with their counts.

Like a little kid, I asked her today if she could tell me the story about the people whose counts go up and down. It’s reassuring to hear repeatedly that I’m not the only one it happens to.

I told her my worries about the six-month mark, and asked her what she thought about my concerns.

“What do you think?” she asked.

“Well,” I said, looking out the window at the busy Boston street. “If a bus hit me on the corner six months ago, it doesn’t mean that another bus will hit me in the same spot today or any other day.”

She smiled.

I smiled. I thought that was a pretty good answer. Now I just have to believe in it.