A big re-birthday is around the corner. Kineahora.

I just completed a post for Health Union about the magical thinking, or superstition, that keeps me from saying that on Jan. 31, I will celebrate 10 years since my fourth bone marrow transplant.

Chances are good that I'll make it, but you never know, and I don't want to jinx myself.

It's all about the wording.

In the post, I explained that it might be OK to say it if I added the Yiddish phrase kineahora – “no evil eye” – to protect myself. (It’s pronounced KINE-AHORA.) It's even better if you spit three times, or in the interest of sanitation, make a spitting sound. It could be toi, toi, toi; pu pu pu; poo, poo, poo; or other variations.

So:

“I’m looking forward to an important cancer anniversary, kineahora poo poo poo.”

It also works well if you're complimenting a tennis partner.

"You had a good shot, kineahora."

The author of a post on the site The Word Mavens writes, "Jews are not the only ethnic/religious group to believe, at least a little bit, in superstitions. But maybe we put a greater stock in our superstitions because we’ve had such a tough time of it these past 5,000 years.

"If you slip up and brag – or if someone compliments you, what can you do? You can invoke the Yiddish phrase kineahora – 'don’t give me the evil eye.' As in 'I’ve felt good all summer, kineahora.' Or 'You look nice today, Sylvia. Is that a new dress?' 'Kineahora. I just got it. Do you like it?'

"The derivation of the phrase is from the German kein, meaning no, and the Hebrew ayin ha-rah, the evil eye. The kein and ayin are blended into one word: kein or kayn – keinahora."

I learned that you can go to the Evil Eye Store for protection. I saw some nice things, but I didn't buy them.

Murano evil eye pendant protection charm and multi-evil eye pendant

On another topic, in a previous post, I wrote about the solidarity and sorrow that comes from belonging to a community with people who have, or have had, similar illnesses. I had to break it into two parts because there is so much to say. The solidarity comes from meeting people who know what you're going through. The sadness is well known to readers of this blog. It's about losing friends like Patricia, Anne, Dori and Vytas.

The kineahora post took a ridiculously long time to write, while the solidarity and sorrow one was pretty free-flowing. Maybe it's because I needed to do some research for the former. Looking things up on the internet is easier than going to the City Library, which I did in the old days at the former Union-News, when doing research on microfiche would make me dizzy. Yet there is so much information on the internet that you can end up with information overload – also dizzying – and it can take twice as long.

Also there was something about the topic. The weightiness of it. At the paper we used to revel in writing the stories that came out with the ease of a hot knife cutting through butter. This was not that kind of story.

On yet another topic, here is a link to a podcast in which I share some of my story.

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.

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.