Celebrating two momentous birthdays

You might think it odd that I thought tomorrow was my birthday while it’s really today, but you might cut me some slack if I reminded you that I have had five birthdays, and it’s hard to keep them straight.

Top, with my donor, Denise Ledvina, in 2011;
bottom, celebrating Marge's 100th birthday this weekend

Today is actually my re-birthday, the 10th anniversary of my fourth stem cell transplant. I didn’t realize it was today until my donor, Denise, sent a happy re-birthday email.

I think I knew at one point that I was off by a day, and I was going to fix it on the blog intro, but then it slipped my mind.

The momentous occasion took place around 9:30 p.m. on Jan. 30, 2009.

My re-birthday dessert

I double checked by looking back at my blog post from the day after the transplant.

It began, “I meant to post yesterday evening at my leisure while awaiting my cells, which I thought were due to arrive at the cell manipulation lab at 9:30 p.m. and would therefore come to me around 11. (Cell manipulation lab sounds so futuristic; I am grateful that in terms of scientific advances, the future is now.) Then Helen, my nurse last night, said they would be ready for actual infusion around 9:30 and that she would begin pre-medicating me at 9 with Ativan and Benadryl, at which point I got all discombobulated and couldn’t eat my dinner, let alone write.

"It’s not that you have to do anything to receive the cells; you just lie there and try to stay calm. But it feels momentous, especially when they hook you up to a monitor tracking your heart rate, blood pressure and oxygen saturation. Of course it also feels enormous because I know how important those cells are to me. The infusion took about 45 minutes and went smoothly most of the way while Helen watched the monitor and me.”

The rest of the evening did not go so smoothly. I wrote,

"The infusion had just about finished when I reacted, either to the cells or to a fever I was going to get anyway. I started shaking vigorously, and my heart rate went up. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who came in quickly. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. Also they put me on oxygen."

Marge's birthday cakes

I was worried that the cells would not take, but as you can see, they did. I wouldn't be here without Denise, the Dana-Farber Cancer Institute, and The Gift of Life Bone Marrow Registry.

On Dec. 25th, 2008, in a post headlined Downhill all the way, I wrote, after I learned about my second relapse, that I thought it was the end of the road. I was thinking I wouldn't see my children finish growing up, wouldn't see my grandchildren.

I wrote about wandering over to 6A, where I would soon live, asking one of my old nurses, Myra, how I could go through chemotherapy and transplant again.

“Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

It’s hard to believe it has been 10 years.

In this Philadelphia Inquirer story , I wrote about how Denise's life-saving donation, through The Gift of Life, was inspired by her desire to help the great jazz saxophonist Michael Brecker.

Another momentous event over the weekend was the celebration, on Sunday, of my Aunt Marge’s 100^th birthday. A group of us gathered in her apartment for a mid-afternoon party. It was a privilege to be there to mark the occasion and to see her looking so pleased, and so great. You can tell from the smiling faces in the photo that everyone was having a good time.

We had gone down to New York on Friday.

On the way, we had to stop at the dentist. I had catastrophized. I thought I had lost a chunk of my tooth and that meant yet another tooth was disintegrating, but I forgot that I had a filling in said front tooth.

So it was just a filling that had fallen out. He replaced it, and off we went.

View from theater seats

I wanted to go down to Little Italy to an old haunt, Puglia’s Restaurant, so we regrouped and off we went. The food was still good and the singing was still fun. We stopped in for a cannoli at the bakery down the block on Hester Street.

The next afternoon, we went to Lincoln Center to see “My FairLady,” starring Laura Benanti as Eliza and Danny Burstein as her father. It was loverly and magical.

On Sunday before Marge's party, there was brunch in Brooklyn and a walk (more loveliness) through Prospect Park.

Since getting back home on Monday, I've been a little under the weather, but not so much so that I didn't have room for my share of my re-birthday dessert with a couple of special people at Food 101 in South Hadley. 

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.

Driving around in cars with ex on our anniversary

On this day 35 years ago...

Today is my wedding anniversary. I spent some of it with Jim (that would be my ex, if you don't know), driving around doing some business involving Katie's car. I drove it down to Enfield and followed him to the Ford dealership, where he left it for a transmission repair that is under warranty.

Then he drove me home. And we argued the whole way.

HA, not really, that is a flashback.

Actually we had a nice drive talking about this and that. We have a lot in common, of course starting with our three wonderful children, but also including love of newspapers (though not all that they have become) and admiration for good writing and annoyance with bad grammar specifically and bad writing and general. Back in the day when we lived in sin in Florence, we would go down to Jake's for breakfast, spread our Sunday newspapers out, and talk about interesting stories for as long as we saw fit to sit there.

Today while Jim was in the dealership, I looked at my phone and saw a tweet that inspired me to ask, when he came out, if he edits everything he reads. He nodded.

Someone was tweeting about myelodysplastic syndrome, or MDS. The writer said, "Here are the symptoms." Instead of following through, he listed the functions of red and white cells and platelets. It was just a tweet, but still, I wanted to reply, hey, if you're going to tell us about symptoms, let's hear them.

(According to the Mayo Clinic, "Myelodysplastic syndromes are a group of disorders caused by poorly formed blood cells or ones that don't work properly." In the beginning there are no symptoms, but later there is a long list of symptoms, such as fatigue, similar to leukemia's. )

I reminded Jim why I'm interested in MDS. It is what the brilliant jazz saxophonist Michael Brecker had before he got the acute myeloid leukemia that led to his death. The drive to find a bone marrow donor for him is how I got my donor, Denise. I wrote about it for the Philadelphia Inquirer, the late musician's hometown newspaper.

So, talking about a pet peeve led to talk about life and death.

We had talked on the phone early in the morning about another kid-related project: getting the old lawnmower serviced so that Joe can use it. About to leave for tennis, I told Jim that he could go into the kitchen and get the garage door opener so he could get the lawnmower out. He was going to put it in the back of my Subaru to get it serviced while I drove Katie's car to tennis.

True confessions: I scurried around the kitchen trying to clean up quickly. It didn't look that bad. But compared to the way he lives, it is a big mess, and I didn't want him to see it. If you asked me why, I wouldn't know exactly what to answer.

Last year I wrote an intense post about my memories of our wedding day. One of Michael Gordon's photos illustrated it. Facebook kindly offered it up today as one of those memories "we care about," so I thought I'd use it again.

I got weepy thinking about all the people from that day who are no longer with us. Notably, of course, my parents. I talked to Katie about the car and other stuff and then we started laughing about a bunch of things and then I forgot to be sad.

Saved!

After I waited for about an hour in the clinic Monday, Melissa finally came into the exam room where I sat after progressing through the layers of the system. (Sit in waiting room. Get blood drawn. Back to waiting room. Get called into exam room. Wait in exam room.)

She stood at the door, a copy of my blood counts in her hand. "Well," she said, while my heart fluttered for a second. "These are GREAT counts."

My white count was 8.8, hematocrit 31.9, and platelets 61. Saved! (Saved from my imagination, but still, saved is saved.)

I had let the beach ball of my anxiety rise to the surface (Wendy Halpern's suggestion) and then I had tossed it to several of the many people who will put up with me. The "problem" was that my visit Monday was on Dec. 21st, the year anniversary of my relapse, and since I hadn't felt well last year and I didn't feel great this year on this particular date, I tied everything together.

(In other words I was worried that I would learn on Monday that I had relapsed.)

Some responses: "Don't DO that. Think about something else."

or "Ronni, this is negative magical thinking. It's not real. Stop doing that."

"It's just a day like any other day. You'll be fine."

So I was OK and I could move along. Big sigh of relief.

My liver function test was down slightly, but Melissa said to stay on the 40 mg. of prednisone anyway while it hopefully continues to improve. We talked about prednisone: She said it's an amazing drug that fixes many problems, but it creates problems in many areas too. So just as you can credit many improvements to the prednisone, you can blame many problems on it too.

For example, as the dose has risen, my legs have gotten weaker. I have been more tired, and also moodier. I can blame that all on the prednisone. Still, this week I've been able to be busier, and that has helped. For logistical reasons, we squeezed our Hanukkah party in last night, when it was no longer Hanukkah. You can't do that with the major holidays, but you can do it with Hanukkah, or at least we do, planning it around when the college "kids" come home and the working "kids" can get away.

Diane and David and their two children, Lily and Sam, came to our house last night from Newton for dinner, lighting of the candles and a present exchange. Joe is home for his winter break, and Ben managed to come for a few days. I, obviously, was already here with Katie.

They will laugh if they read this, because it is an understatement: I am not too well-organized. In addition, I am especially spaced-out these days. So, I'm lucky that Ben was around all day to push me faster through my errands, and that, after jockey practice, Joe stepped in to help make the dinner and hors d'oeuvres (which featured Kosher pigs-in-blankets).

Everyone, including of course Diane, stepped up in some way. It was a genuine family affair, and everyone seemed to have a good time.

Diane and I had to laugh about the way we set the table in our own heads. When we were growing up, it was always "Us four and ...." meaning our mother, father and us two sisters as the basic unit, adding on however many guests were coming.

Now as Diane parsed it out, it was "Us four and..." meaning her and David, Lily and Sam, plus the others, such as my three kids and me. I pointed it out as she said it aloud. To me, it's a different "Us four," meaning Ben, Joe, Katie and me, and then the others.

The building blocks are the same, just arranged differently. I'm glad that I'm still in the mix.