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.

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.

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.

Also:

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.

Monday, December 31, 2018

Weddings and travel and parties, oh my

Cousins at Tibetan wedding ceremony with Karma and Jeremy, center
At first I couldn't understand the invitation:

“Jeremy and Karma's Wedding Weekend” 
Saturday, December 22nd at 2:00 PM to
Sunday, December 23rd at 3:00 PM

The address: 

Walker Creek Ranch 
1700 Marshall Petaluma Rd, Petaluma, CA

So the wedding of my cousin Nancy's son Jeremy was going to last for a whole weekend?

On looking more closely, I saw that there would be an American ceremony on Saturday, Dec. 22 at 2 p.m., followed by a reception at 5, with Dinner, Dancing and a Drum Circle at the fire pit.

On Sunday, Dec. 23, there would be a Tibetan ceremony at 11 a.m., proceeded by breakfast and followed by a celebration brunch.

There was no doubt about it, I was going to go. My beau said he would go with me.

Tibetan and American ceremonies
I got an Airbnb on Stinson Beach, just a few steps from the Pacific Ocean, for three nights before the wedding. Nancy met us for a lunch and a dinner before the wedding. It was special to have that time alone with her. We walked on the beach and took an amazing walk in Muir Woods, climbing to the top of a peak, away from the maddening crowds. For the overnight at the ranch, Nancy reserved a lodge for a bunch of us. In between events, we sat around and talked. It was cozy and fun.

It was great spending time with West Coast cousins that I don't see enough. We miss having Serena on the East Coast but it is so good to see her happy with her sweet baby Goldie, who is cute in photos but even more adorable in person.

During the American ceremony, the bride and bridegroom's dogs watched from inside a dog stroller. One wore a dress and the other, a tuxedo.

I missed Raining Jane on their East Coast tour, so I was glad a got a chance to hear them play at the reception.

The Tibetan ceremony was a condensed version of a lengthy ritual.  Family played a role in laying silk scarves around the wedding party. They wore beautiful silk garments made especially for them. We did a circle dance that reminded me of the hora. There was enough love to go around for two ceremonies.

Also, lots of good food!

The rain held off until our departure day.

Three hours time difference doesn't require much of an adjustment, but that, combined with all the running around, left me feeling kind of tired.

I had two kids home, which perked me up.

Then the other night, Maddie had a seizure. It was incredibly scary. Her jaw and muscles were clenched, and she fell off her spot on the couch onto the floor. Her legs were twitching like crazy, and she was frothing at the mouth. It seemed longer than it probably was. She stopped and got up and started walking around. You could tell she was agitated but basically OK.

Muir Woods and me
Katie and I took her to the emergency vet in Deerfield. Blood work, blood pressure and a few hundred dollars later, she turned out to be OK. The vet said she "allows" a dog to have one seizure without taking any action. If she has more, we don't need to take her to the vet, but we do need to keep track, and then medication might be in her future.

It was a 2 a.m. morning.

This past weekend, two more parties.

One, the always fabulous holiday party at tennis friends Karan and Marianne's house in Springfield. Last night, a Team Fred appreciation pizza party at Joan's house in Florence. Still Fred's, though. 

It was bad timing to be talking to a woman about our dogs because when I told her Maddie's age (12) , she said, "You're living on borrowed time."

I knew her comment reflected her own attachment to her dogs, but it hit me the wrong way. You wouldn't say that about a person's elderly parents. It fed into some of my morbid tendencies. 

Waiting for a crumb at deli
She said she usually has a backup dog to mitigate the pain. I've often thought of getting an extra. But I'm a one-dog parent. I've been attached to all of them but I think I'm especially attached to Maddie because it's often just the two of us. Here is a link to a story I wrote about our bond.

This morning I gave her an extra enthusiastic compliment on her down dog and gave her an extra big hug to start the day. 

I know the drill. Focus on the present. Take a walk. If you worry about the future you're going to miss the present. I have known some old labs. And so on and so forth. Sometimes easier said than done.


Sunday, December 16, 2018

10 years ago, it was downhill all the way

Callen and Nell

I haven't been running that much, but yesterday I decided to see how I did with some hills, back and forth to Brunelles Marina. The early registration email from the Saint Patrick's Race committee got me thinking.

A man walking down the road was going faster than I was running. If I were to do it again and didn't want to finish last, I would have to try to figure out how to get a little faster. First of course I'd have to see how I felt going a longer distance. The neuropathy in my feet is not a big help.

When I checked at home, I saw that I had gone 3.8 miles. Then I drank coffee and walked Maddie, for a total of the 6.2 miles, the same distance as the race. Doing it broken up with coffee in between, and a dog walk at the end, would be the way to go.

I thought about how it's coming up on the 10th anniversary of my second relapse of acute myeloid leukemia. Back home, I looked it up in my handy reference, my own blog.

In hindsight I know what was happening. Looking back, I can still feel the grip of uncertainty and panic. Here are some excerpts. Maybe you want more, maybe you don't. If you want the whole post, you can click on the link. For reference, the CMV to which I refer is Cytomegalovirus. It is not dangerous to most people, but it is to people with compromised immune systems like I had.

Dec. 12, 2008, Transfusions and rashes and shakes. I survived the long day at the clinic, but it wasn’t easy. My white count was down to .9 (normal is 3.8-9.2) and my hematocrit was down to 21 (normal is 34.8-43.6). I wondered how I had been able to walk the dog nearly two miles the day before. I guess I was running on reserve power. I needed a platelet transfusion in addition to needing blood; I figured if my platelets were that low, I didn’t really need to know the number, because it would only spook me. This being the third downward spiral after a combination of CMV and Valcyte, the drug used to treat it, they switched me from the Valcyte to a different drug, Valtrex, which looks like a horse pill and needs to be taken four times a day. They said this drug should hold down the CMV but not mess up my counts.

Dec. 16, 2008, Spending some uneasy time in limbo. My counts were still low yesterday: WBC was 1, hematocrit was 24, and platelets were down at the “don’t ask, don’t tell level.” I know I could ask, but for some reason I get especially rattled by low platelet levels. I got platelet and blood transfusions, with 50 mg. of Benadryl and a steroid to stave off a platelet reaction, and ended up staying the night at Diane and David’s, this time being rescued by David because Diane was out of town. It also appears that on top of the already low white count, I may have a virus that is further suppressing my counts. I've had an on-and-off low-grade fever, but I feel OK. Yesterday they sent out some blood samples. So the primary suspect is the CMV, the Valcyte and now a new virus, and when the virus goes away my counts should come back.

Dec. 18, 2008, Biopsied, transfused, and still wondering. 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. 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? 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.

Dec. 25, 2008: Downhill all the way. It’s been a terrible week. I felt really sick all weekend, and when I called Dr. Alyea Sunday, he said to go to the Brigham and Women’ emergency room in Boston, from where I would get admitted. He also said he was sorry to tell me on the phone, but the pathology report on the bone marrow biopsy report showed that I had relapsed. I had to get to the hospital in a snowstorm, so I didn’t have time to digest it. I still haven’t digested it. I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren. I guess this is my mind’s way of going through the mourning process; I hope to get to the acceptance phase soon. I wandered over to 6A (my home for the last transplant) from 6C (where I am now). Myra, a wise, funny nurse, who's been doing transplants for ages, knew what had happened. “Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

I had my pity party, and then I put on my boxing gloves.

Through luck, an amazing team at the Dana-Farber Cancer Institute, the strong stem cells of my donor, a little stubbornness on my part, absence of the challenging FLT3 mutation, and a lot of help from my friends and family, I did get to see my children grow into wonderful young adults and I did get to see those adorable grandchildren.

It's hard to believe that it's 10 years after those challenging days.

Tuesday, December 11, 2018

Three cheers for a driver who wasn't too bad

Last week when I got to Dana-Farber for ECP, aka the light treatment on my blood, I thought my blood pressure would be high because I was drinking a Cumberland Farms coffee with one of their caffeine shots.

Coffee snobs take notice: They have good dark roast coffee. I am one of them and I was surprised.

My blood pressure was actually fine.

“Must have been the driver,” I said to my nurse.

That’s because I was the driver,  and unless you count my internal monologue, there was nothing to upset me.

The drivers in general have been OK lately. More opportunity for calm, less fodder for writing. I’ll take the calm.

I drove myself because there were too many connecting points to trust a ride service to get me there on time.

On Wednesday I had ECP at Dana-Farber. Then dinner and sleepover at Diane and David’s, followed Thursday morning by back-to-back dermatology appointments at a Brigham and Women’s outpost at 850 Boylston Street. Then down to Dana-Farber for an 11 a.m. checkup with Melissa, then to the Cheesecake Factory at the Chestnut Hill Mall for lunch with a good friend. (I would say an OLD friend but that sounds like the friend is aged, whereas he is old as having known him for a long time, since college.)

Dr. Lin, who takes care of the surface of my skin, zapped many small squamous cell cancers on my face, neck, arms and legs. When you hear squamous cell cancer, you think, out, out, damn spot, but they grow slowly and aren’t large enough to need surgical removal. 

She does the cryosurgery with a softer touch than the overzealous Fellow in another office who zapped several areas so hard that I got blisters. (I told her about it and she said that if you overdo it, you leave scars, which is what happened on one of my hands.)

She wants me to apply Efudex, the chemotherapy cream, to these same areas. It agitates the cancers so that they turn red and angry and decide they don’t want to live with you anymore.

I actually just wrote a story, not yet published, about the side effects of Efudex, generic name Fluorouracil. I feel like I have no choice but to use it. The spots are red enough already and I don’t want them to get worse before I go to California next week for a wedding. She said it’s OK to wait.

They were going to make me get dressed and go across the hall to see Dr. Liu, who specializes in subcutaneous dermatology and is in  charge of the treatment for my graft vs. host disease of the skin. (That’s the ECP that I’ve been doing for two years.) But they relented and let her come to me. 

She wants me to continue getting the treatment every other week. It’s making my skin softer, though not less lumpy. Just because it’s fun to add one more thing, she wants me to go to physical therapy to try to increase the flexibility in my hands and wrists. The rest of me has gotten more flexible, but my hands and wrists are getting more tight.

Where “normal” people can put their hands in prayer position and lift their elbows, I can barely lift them at all. And when I try to place them flat on the floor in yoga, one almost makes it but the other is cupped. This is hard on my wrists, and makes a poor foundation for my down dog. Sometimes I use blocks...but that is another story.

She set it up in the Boston area, but when they called, I asked if they thought anyone in Western Massachusetts could do it. The person on the phone said yes, it would be possible, as long as I found someone listed on the website of the Hand Therapy Certification Commission, or HTCC.org.

It turns out there are many, including in Amherst, at the Valley Medical Group. 

Another opportunity to ask, who knew?

I don't listen to many audiobooks, but friends recommended Bruce Springsteen reading his autobiography, Born to Run,  and it made the two days of on an off driving much easier. One of the reviewers called it exhilarating, and it definitely was. It took my mind off skin cancer and up tight hands and all that.