Wednesday, January 30, 2019

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 100th 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. 

Thursday, January 24, 2019

More drama on the dental front

Another great Health Union illustration
Of all my posts that Health Union has shared on its facebook page, so far the one on Chemo and Teeth, Not a Pretty Picture, Part 1, has garnered the most reaction. (I had to write it in two parts because there was so much to say.)

Readers said they could relate to losing teeth and spending money. Clearly I am not alone.

I started out by expressing my dread when a tooth chipped not long ago. I wrote,

I don’t have much dental real estate to spare. I have lost 12 teeth, one by one or two at a time. It’s possible that my dentist might be able to repair the tooth. But the teeth I lost were so fragile they could not be repaired when they became decayed and either cracked, chipped or even crumbled. When I felt that I was chewing on something that should not be there, and when I spit the tiny piece of tooth into my hand, I thought, “Oh no, not again.”

I ended up losing the tooth and needing another bridge.

I don't have dental insurance. The plan available to me was terrible. In general, dental insurance stinks.

I explained, "Chemotherapy causes dry mouth, which is bad for dental health since saliva helps prevent tooth decay."

Also, a compromised immune system during chemotherapy opens the door for bacteria to have a field day on your teeth.

After I wrote the above part of this post, I was eating a salad and felt something sharp in my mouth. I spit the jagged piece out. It looked like a piece of a tooth. But I couldn't figure out where it came from. I went to look in the mirror. It looked like I had a piece of food lodged between my two front teeth. I looked closer. What I thought was food was actually a HOLE where part of my tooth had been. I'm afraid I'm going to lose the tooth. It is in the worst place.

This happened yesterday. I got a dentist for two days later. Today I called to see if they had a cancellation. I had a toothache. They couldn't fit me in. I'm going tomorrow.

Did I attract some malevolent toothy force by writing about my teeth???

Today I forgot my troubles during some good doubles at the Bay Road Tennis Club.

Somehow or other, though, I whacked my left arm with my racquet.  Must have been a misguided follow through.

A big purple bruise appeared almost immediately. Either I'm very strong or I have very thin skin. At least my partner and I won 6-0. The other two wanted a (fun) grudge match. We ran out of time at 4-4. I didn't want to go out in the pouring rain, so I sat around for a while and watched a Pickleball game.

Friday, January 18, 2019

No, I am not really having a baby

Yesterday I had an interesting drive to Boston.

The driver was nice but didn't speak a word of English. I needed to tell him a few things, so first I called Katie.

She didn't answer, so next I used my phone. He wasn't sure if Dana-Farber would be coming up on the left or the right. I asked the phone to tell me how to say left. As you can see, the answer is izquierda.

When we got there, I wanted to say "I'll call you when I'm ready," so I asked the phone. That little Siri sometimes doesn't get things straight. She said, "Voy a tener un bebé." We both laughed. It means, "I'm having a baby."

When it was time to leave about two and a half hours later, a nurse who speaks Spanish got on the phone. He told me that the driver was a few minutes away and I should call when I was ready. He also told me how to say I was ready but I immediately forgot, so I got it from my phone. Estoy listo.

I have switched my ECP sessions (the light therapy for my graft vs. host of the skin) to Thursdays from Wednesdays, every other week, for two reasons. One is that Thursday is the only day Melissa can see me now. I could have slept over and kept it at Wednesday. But also I would have had to miss about 10 minutes of the Wednesday Livestrong class. The trainer who did my intake said it was OK, but when it came down to it, I saw that it would probably be disruptive.

I'll miss Larry and Lisa, the Wednesday regulars.

But I already had a good conversation with a new patient and his wife. He was only on his 18th session and was at the point where I was when I started some two years ago, going twice a week.

He got such bad GVHD of the eyes (ocular Graft vs. Host Disease) that he had to get one cornea replaced. 

She wanted to know when you know when to stop. The nurse and I both said you don't really know.

She said it's like the Hotel California. It took me a minute to get that she was referring to the Eagles song. She said, "You know, you never leave."

I assume we'll leave sometime, but it's hard to know when that will be.

Here's the verse.

Mirrors on the ceiling
The pink champagne on ice
And she said: "We are all just prisoners here
Of our own device"
And in the master's chambers
They gathered for the feast
They stab it with their steely knives
But they just can't kill the beast
Last thing I remember, I was
Running for the door
I had to find the passage back
To the place I was before
"Relax," said the night man
"We are programmed to receive
You can check out any time you like
But you can never leave!"

Wednesday, January 16, 2019

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.


“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.

Thursday, January 10, 2019

Don't look at the photos

In the process of writing about my graft vs. host disease of the skin for the Health Union website, I  had to cover my eyes when scrolling through the photos in the review of Cutaneous Manifestations of Chronic Graft-versus-Host Disease.

It shows me that many patients have it much worse than I do. There are 16 possible manifestations. I had to look up the meaning of some of the words to find out if they apply to me. 

For example, erythema, basically reddened skin. Yes, I have it, mostly on my hands, and in patches on my legs.


Scleroderma – thickening and hardening of the skin – one of the first signs, much better after treatment with the light therapy, or extracorporeal photopheresis. 

Rippled or cellulite-like fibrosis – "Skin appears to be rippled in areas rich in adipose tissue-volar arms, abdomen and lateral thighs; caused by fibrosis of septae of subcutaneous fat." OK, so fibrosis is the thickening and scarring of connective tissue. Some words, you look up, and if you're a layperson, you still don't know what they mean. In summary this is the rippling and dimpling that I've complained about. It may not get much better. But it's getting softer, yay!

Positive prayer sign – "Characterized by patient inability to completely close gaps between opposed palms and fingers when pressing their hands together in prayer’s position, or acute limitation of wrist dorsiflexion."

Well, I can close my hands together but I have limited flexibility in my wrists, especially on my left side, leading to my hand making a cup instead of lying flat during yoga. Also my wrists hurt when I try to place my hands flat on the floor. This does NOT seem to be getting better, and in my quest to accumulate more and more specialists, I am going to go see a hand therapist. My dermatologist set me up with one in Boston. I called to ask if specialists do the same thing around here. The answer is yes. I haven't made the call, but I plan to...when I get around to it.

Sometimes the list of things I need to do just to maintain myself get so long it gets me down.

Thursday, January 3, 2019

Two-hour yoga, tennis slice, and other fun stuff

For New Year's Day, I first checked Serenity Yoga to see if there were any classes – there weren't – so I tried Yoga Center Amherst  and saw that they had a two-hour class combining music, chanting, and asanas.

So I signed up and went. It felt like the right place to be. Apparently a lot of other people felt so too. We were packed in. That was OK. It created a good energy inviting you to talk to your neighbor and go with the flow.

At one point when we were left to do our own thing and it got a little confusing, I got into one of my favorite and most calming poses, legs up the wall, supported by a block, only legs in the air, without a wall, like this image from Gaia. (I read someplace that you should do legs up the wall every day. It's a great way to get your thoughts to take a nap.)

I had vowed to take the day off from writing, but that didn't happen. I walked over to the Black Sheep Deli and got a coffee and a treat and sat in a favorite window seat. My resolution of staying calm got hijacked by the the caffeine. I guess going with the flow meant going and getting a coffee and writing.

Next I went to the Hadley Target and found it packed, like the yoga studio, only with a different vibe. It seemed like everyone who wasn't at yoga was shopping.

I had called Monday for my ride to Boston (for the light therapy, or ECP) but everyone had left early. I waited on hold early Tuesday morning for about 45 minutes, and when someone finally picked up, they said they couldn't do same-day service. I remembered to book ahead through February, but in the meantime I drove myself.

Due to accumulating scar tissue in my left arm, the nurse has had to jiggle the needle around. This is not a good feeling. Once in, it stung and then hurt, but some Tylenol took the edge off. Since I have been using two needles, the process goes much faster, around two hours instead of three.

Three sessions ago, I was curious about why my hematocrit was a little low, a little over 29. The curiosity bordered on concern. But two weeks ago it was 32, and yesterday it was 33. (Normal range for women is 34.9 to 44.5.) The doctor who visited me said that the lower count resulted from loss of blood in the procedure.

I slept at Diane and David's and then got up early enough to get to Bay Road on time for my tennis contract at 10. The traffic leaving Newton made me a little nervous. But it cleared up and I made it. We had some good games, but I don't understand what's up with one of the women. Sometimes she's friendly, at other times prickly.

She doesn't like the way I slice when we warm up at the net (says it isn't a good warmup because she can't hit it back), so today I hit it flat. The last time she said it, I said that's how I play, and I continued to do it, but in the interests of a good warmup, I did it differently today.

One of the players in George's summer group said that when she goes to Florida, her slicing gets everyone mad, so it must be the same effect. It's hard to change, because when we're with George, we hear about it when we DON'T slice. By the way, it works pretty well in a game.

Roger's backhand slice
Then, when she was at the net warming up, she didn't think I got enough to her, and she complained that she wasn't getting a good warmup. THEN when, in between points, I hit the ball over to her and said "heads up," or "coming," (one of the two) it didn't come near her, but she said something in an annoyed tone because she didn't like the way I sent it back. I'm still not sure what the problem was. I think maybe she wanted me to throw it instead of hit it. If I had thrown it, it wouldn't have gone very far.

Geez Louise.

I've been on the verge of saying something to her, and some day I might, but it hasn't come to that. Some day when we're warming up, maybe I'll ask to either be with her or hit opposite someone else and say that the reason for it is that she doesn't like the way I hit. Maybe that will get the point across that I've paid George and The Enfield Tennis Club a lot for that slice and I'm not going to give it up.