Tuesday, August 28, 2018

Warm Wisconsin welcome, bad behavior on tennis court, & another tooth bites the dust

With new friend Mary Robinson at Wisconsin Welcome sign
I Went to Wisconsin without my laptop and neglected the blog. I did a little writing on the rehabbed iPad (I had dropped it almost as soon as I got it) and I'm sure it's not complicated but I have a leap to make before I can write a blog post.

The MacBook Air is my version of the old-fashioned well-sharpened pencil on a favorite pad, I guess.

Actually I went to Chicago, then on to Wisconsin. It was with my boyfriend. Just trying that on for size. I don't know what to say. He's not a boy.  Boyfriend and girlfriend kinda work, but not totally at a certain age.

In previous blog posts I wrote that "a friend" drove me to Dana-Farber. It's time to be a little more specific while at the same time not revealing too much.

I went to meet his sisters and extended family. So that was a big step. There are sensitive issues.

My "friend" and I have discussed the awkwardness of finding the right name for the significant other, or as my mother used to say, gentleman caller.

Not a partner: too much like you're dancing or in a business arrangement. Although I hear that a lot of people are using it. Not a companion, which sounds more like an aide. Or beau? I used beau for a while but then some people got annoyed and said to please use his name.

I like meeting people and finding out about them (occupational necessities), so I was only a little nervous about the trip. He said, "Just be yourself."

They were so friendly and welcoming, and interesting, that I was immediately relaxed and did just that.

I think it went well, but there were a few moments when I wondered what they thought. For example, we were in the middle of lunch at his sister-in-law's when my fingers decided to do back bends and cramp. Trying probably unsuccessfully to be subtle, I pulled at my thumb to try to straighten it out. His niece asked if I was OK. At the moment I wasn't, because when this happens it hurts a lot.

It isn't just my thumbs. My other fingers can bend backwards also. I couldn't do this if I tried, but when it happens they get a mind of their own. One doctor said this is related to my graft vs. host disease of the skin, though I've heard that it happens to other people who didn't get a stem cell transplant.

 I know that the limited range in my wrists, which is a problem in yoga, comes from the GVHD. (Sorry former and current news peeps, this is an oft-used acronym. The whole terms is a mouthful.)

My beau's sister-in-law said it could be low salt, and she gave me some Gatorade. It worked. I was so happy that I flapped my freed-up fingers around. She kindly gave me a bottle to take with me in case it happened again.

I seemed to have a connecting point with many of his relatives. For example, I talked to one about our shared chemotherapy after effect, neuropathy in our feet. For people who don't have it, it's hard to understand how your feet can be simultaneously numb and painful. I wrote about it in this article about the pain of having and treating neuropathy. 

After a night in Chicago, we drove some four hours to Stevens Point, Wisconsin, my friend's hometown. (How about special friend? Nah.) We had two lovely runs in Iverson Park, along a trail padded by pine needles and leaves.

We also went to Waupaca and Appleton. It was a packed itinerary. I got an actual state map and enjoyed trying to find my bearings...and attempting to fold it back the proper way.

On the drive back, we stopped at a tourist attraction, the Mars Cheese Castle. At first, when Mary mentioned it, I thought for a moment that it was actually made out of cheese! It isn't made of cheese, but there is a lot of it.

I didn't get any cheese because I'm toying with the no sugar, no dairy, diet. I got some pushback on it. It seems like there should be a way to make some changes but adhere to moderation, not total elimination of certain foods. In any case I didn't get very far without eating ice cream.

 It was my birthday on Friday, and while writing the beginning part of the blog, I was eating a large piece of my birthday carrot cake. It's hard to refrain from cake on your birthday. It's carrot cake so it must have something good for you in it. Those little frosted carrots on the top, per chance?

The day before, I had my 13th tooth pulled. As directed by the dental surgeon, I took two Ativan (two milligrams total). I really wanted coffee afterwards. My chauffeur obliged. He was a good sport. I don't remember doing this, but I believed him when he said I was falling all over the place.

I vaguely remember going into the Odyssey Bookshop and picking out three books for him to buy me. (Educated, Less, and the first Louise Penny book, recommended by his sisters and echoed by friends.)

Unhappy camper
The next day I said we could return one because it seemed like a lot. He said it's only three books. Did I say he's a mensch? Also, my dog has a crush on him.

There is a string hanging down from the stitch in my gum where the tooth used to be. It is hard to avoid playing with it with my tongue. It hurts on and off, more so at night. The oxycodone makes me have hallucinatory dreams, but it works the best.  I need to repeat this or else people will think I'm a drug addict: My doctors don't want me to take much Tylenol because it is bad for the liver, in which I have some graft vs. host disease. Advil and the others are not good either, for a variety of reasons.

On my birthday we went to George's smaller (than Wednesday) clinic at the Holyoke Canoe Club. It was a fun time, as usual.

But sadly, in other ways, the stars do not seem to be aligned over my happy place, specifically in our normally relaxed, low-key, Saturday and Tuesday group.

My other groups are set up so that we plan ahead to have an even number. In this group, whoever shows up, plays, so you might have one player at a time rotating in for the server.

It's not my first choice because you don't play a full set. But I realized that the socializing and coffee-drinking while waiting your turn is part of the fun.

If there are more than two people sitting, however, I get antsy. So I either leave or on occasion have asked someone to hit with me on another court. This still leaves one extra person so that anyone who wants to rest, gets a chance to do it.

Last week when a third extra person arrived, I asked another of the "sitters" if he wanted to go on another court to hit. It would still leave one to rotate in.  Believe me, I know what it's like to be tired, so I have compassion.

A player, "E," bellowed, "YOU SIT! We need to rest!"

Excuse me? I wondered, would he direct a guy this way? I think not. Was he being a bully? I believe he was. After I had my turn serving, I packed up to leave. With tears in my eyes. Nobody likes being yelled at. But in addition, for me, an element PTSD comes into play.

I went home to walk the dog. Who does not bark at me.

Saturday was even worse. I went to tennis despite having a bad night's sleep and being a little "off" because of the pain and the remnants of the night's drugs. When I got there, it looked like three would be sitting, but then another player arrived. So we had eight, two women and two men. I was excited. Good for real doubles.

We had some good rallies but they beat us, 6-1. It seemed like it would be obvious to switch partners. They were a stronger team, let's face it. I was off a beat, and so was my partner. I suggested switching, but my partner wanted a rematch. Actually, he INSISTED.

It started out OK, 1 to 1. Then this happened. A ball came right to my partner, just a little bit higher than his head. He ducked. Our coach, George, would say that a good player is always ready to back a partner up. But I guess I'm not that good. I said, "Oh, C, tell me if you want me to get it and I'll go for it."

I didn't think much of it because partners say things like this to each other all the time. And I didn't say it in an angry way, because who am I to get angry with a partner?

The next game when I was serving, a ball rolled half way into the court, near where he was standing at the service line. Etiquette, or just plain being reasonable, calls for the partner who is not serving to pick up the ball. He looked back at me and said, "You get it."

Normally talkative, he didn't say one word after that.

We lost the second set 6-1.

When we were sweeping the clay, he picked up the brush and lowered his head. He would not look up. I grabbed the line sweeper and walked alongside him. "What's the matter?" I asked. He wouldn't answer. I repeated the question. He glared at me.

"I hate you," he said.

"You're just as bad as R," he said, referring to a player who he thinks takes it too seriously. (First I put the whole name in and then took it out.)

"I don't criticize you when you make a mistake. Don't you tell me what to do," he said.

I was stunned.

I followed along for a while and said I was sorry, I wasn't criticizing.

He walked off the court to where George and a group of other players were sitting.

I went over to the other player cleaning their side of the court.

I asked if she heard what was going on and if she saw what had happened during the game. She said she saw him go silent after the point that I referenced.

She suggested that to clear the air, I should just repeat that I was sorry.

So I did it.

"C," I said, "I'm sorry."

He looked up at me with (sorry about the cliche) daggers in his eyes.

"Don't talk to me," he said.


How rude, how ungracious, how juvenile!

This person by the way has been a big supporter through the cancer stuff, and, I thought, a real friend.

You could psychoanalyze...maybe he was mad that the other guy was playing better, maybe he had a fight with his wife, maybe he got out on the wrong side of the bed....

But again, I ask, would he talk this way to a guy?

I can't imagine he would.

Meanwhile, I saw I had a missed call from Katie.

I walked over to the river and sat on a chair. And started crying so much that she probably thought something terrible had happened.

I said I wished I was tougher and had said, "Don't talk to me like that."

I was also crying because I was tired, because it had just been my birthday and my parents weren't there, because I thought of all the parties at Atlantic Beach, and because the sweet photo that my sister posted of the two of us and our mother and Sam in front of 77 Coronado Street made the memory so vivid, and because I lost another tooth and the absence of the tooth generated a dull ache as though the tooth were still there, and because I will need another bridge costing thousands of dollars, and because I thought I knew someone and it turned out he was just another bully on the playground.

Afterwards, my reaction made me think of that horrible presidential debate in which Hillary Clinton turned and smiled when Donald Trump was coming menacingly close to her, after which she wrote in her book that she wished she had said, "Back up you creep."

Clinton wrote, “Maybe I have over-learned the lesson of staying calm, biting my tongue, digging my fingernails into a clenched fist."

The author of an article in Quartz wrote, "The passage is a clear appeal to the women who supported her. And Clinton’s reaction is relatable to anyone who has been harassed or intimidated—even if it wasn’t live in front of the entire country—and didn’t immediately react.

Then again, that's how many of us were brought up, and there is something to be said in favor of staying calm.

Tuesday, August 14, 2018

'Visiting' parents' bedroom, chewing over dietary recommendations

I dreamt I was in my parents' bedroom at 1200 Fifth Ave.

My father's bed was made, but you could see he hadn't slept in it. I looked over at his nightstand  and saw the framed black and white photo of his parents. I knew he was gone.

But my mother's bed looked recently occupied. The pale blue coverlet was on top. She hadn't covered it with her bedspread. So I knew she was around. But where? I couldn't find her.

It was part distressing, part comforting, kind of dissonant.

The day before I had replied to a leukemia patient wanting to know what a stem cell transplant was like. I said the infusion of donor cells itself was no big deal. It was just like getting blood and platelets. I didn't get into how sick you get during chemotherapy, but my dream picked it up.

That night I dreamt I didn't feel well. Someone came in and took my temperature. It was 105. Just like it really was on the night that my mother called every hour or so and the nurse assured her that she had wrapped me in cold sheets and I would be fine.

I also dreamt I had such a bad toothache that I needed to find an emergency dentist working in a hospital, but I had no idea how to find that person.

Today I go to the dentist to find out his plan for the chipped tooth.

On Sunday I went to see a nutritionist (yes, she works on Sunday.)

She said I should cut out sugar and dairy and that despite all the good stuff I put into it, I put in so much crap that it depletes my body of the good nutrients.

She said that the inflammation that I have from my graft vs. host disease of the skin would calm down if I cut out the sugar. She is a fan of maple syrup, though.

She said that most likely, sugar gave me cancer.

If you look that up, every other post says yes it does, no it doesn't.

I think my mistake was in telling her that after tennis, I go to Breezy Acres and get coffee cake.

She said I eat too much fruit and not enough vegetables.

I remember going through something like this a long time ago, before cancer, and telling my mother I was going to cut the sugar. She said please don't cut out the fruit, it has so many good things in it.

At Atlantic Beach, we loaded up with fruit from the fruit truck. It's part of my culture.

The nutritionist probably has a point about the coffee cake. I went one whole day without it, and I survived.

But seriously, it is summer and I'm going to keep eating local fruit. I will make an effort to cut back on it though, and when I go to get tomatoes or corn maybe I'll have to go to Dave's, or if I go to Evelyn's, avert my eyes from the coffee cake, but that might not work because the smell there is so wonderful.

Or maybe I'll cut back and get one sliver to have with my afternoon coffee, which I am supposed to cut out but that is not going to happen because then I won't be able to write.

I think she meant to cut it ALL out.

She is not a fan of the yogurt I have been eating in large quantities. I thought I was doing something good. It's very confusing.

I got some almond "milk," which might not be called milk for too long.

I guess I can try for a few weeks to adhere to it as much as possible, but in the back of my head, I hear my father saying, "Everything in moderation." He isn't saying, "Cut out all the fun stuff."

Also, I'm going to Wisconsin and I need to eat cheese.

It's summer, so what about ice cream? Maybe one scoop instead of two?

It can get old to call everything a First World Problem but when I get in a bad mood about this I do have to remind myself that it is a luxury to have this problem.

Wednesday, August 8, 2018

A little more dental drama

Well, folks, I might be getting near the point when I pop my teeth out before bed.

It wouldn't actually be teeth. It would be just one tooth, but it sounded more dramatic the first way.

I got worried on Friday when a piece of an upper tooth chipped off when I was eating a soft Cliff Bar. It wasn't even an almond or a Tootsie Roll, two of the previous culprits.

The major culprit of course is chemotherapy and how it suppresses the immune system. Chemotherapy causes dry mouth, which in addition to feeling bad, is also bad for dental health, since saliva helps prevent tooth decay. Chemotherapy also disrupts the balance between the beneficial and harmful bacteria in the mouth.

Without chemotherapy, of course, I wouldn't be here to write about this.

My teeth have been pretty calm lately. This after losing 12 teeth over the course of my treatment. Dr. Debian has been able to repair the remaining teeth that shed little pieces or pieces of fillings. He was on vacation this week. So yesterday I saw a different dentist at one of my homes away from home, Holyoke Dental Associates. (The other being Dana-Farber.)

After looking at the X-rays and checking the chipped tooth, Dr. Griffin looked at me solemnly.

He said the tooth was infected (in other words, a dental abscess) and in "normal" situations could be saved with a root canal and a crown. But he did not think there was enough left of the tooth for it to hold a crown.

He thinks it should probably be pulled. But he is deferring to Dr. Debian, who is returning next week. I have an appointment for Tuesday.

Say it is pulled. I then have two options.

I can go the route that I did when filling the gap on the upper left side: getting a permanent bridge (not paid for by insurance).

Or he said I could get a denture, which is covered.

I asked, "You mean the kind you pop out at night? "

"Yes, that's right," he said.

Not a good visual.

In the meantime, he gave me a "z-pack," or Azithromycin. The tooth hurt but started to feel better pretty quickly.

I won't be happy if I find out on Tuesday that I need tooth number 13 pulled.

But it could be worse.

Friday, August 3, 2018

Squamous cells still not serious, Shakespeare in the Park still great

I don’t have checkup anxiety anymore, but I do have checkup curiosity.

View from the back row, Twelfth Night at Delacorte

What will they find this time?

Yesterday was dermatologist day, followed by more skin-related stuff: my appointment at the Kraft Family Blood Donor for the light treatment, or ECP, on my skin.

I was telling someone about it and she said she knew about graft vs. host disease. A friend who also had a transplant has it so badly in his joints that he can barely move. That puts mine in perspective.

My appointment was at  9:15 a.m. for a skin check. I didn't think I had anything major, but I do have some flaky areas that go in either direction, possible squamous cell cancers or pre-cancers or actinic or other types of keratosis. Turned out what I had could be frozen, so, no suspect squamous cells or biopsies this time. Dr. Lin zapped a few spots, leaving the choice one, in my left ear, to the resident. It was LOUD.

I did have a little problem with her word choice. She said something along the lines of "you've been lucky that your squamous cell cancers are still just on the skin."

Still? Implying that they could at some point be the kind that spreads? That could kill me like what happened to Ann, who survived leukemia only to be taken by a spreading squamous cell cancer?

The train can run away in a second.

We're friendly enough that I could give her a little swat on the elbow. "Still? Can't you find a better way to say it?"

"We're all just still here," she said. "We don't know what will happen in the next minute."

But, she said that I'm lucky that my Dana-Farber team watches me so closely. (As does she.)

OK, then, on to the next thing. For no real medical reason, my mood had dropped a level. But that's the way it goes.

I drove to Dana-Farber for ECP, which I had moved from 4 p.m. Wednesday to 1 p.m. yesterday so that I could have two appointments in the same day. I had decided to drive myself so that I had more flexibility. I didn't know exactly when I would get out of the dermatologists’ office so was better to fend for myself than to depend on a (possibly flaky) driver.

I was tired from the two trips to New York. My left eye was twitching. But I had food and coffee one way and iced tea the other and made it. 

Despite being tired, I am still  flying high over what the New York Times calls the “blissful” musical version of “Twelfth Night” that we returned over the weekend to see in its entirety at Shakespeare in the Park. Deadline Hollywood called it "an exuberant, seamless melding of song, choreographed dance, sign language and gesture."

Shakespeare line, revisited
I call it pure joy.

 The effect was probably heightened by the effort Katie and I put into seeing it a second time. As I wrote previously, we only saw 50 minutes – in the rain – before the show was called the week before. Katie and I, joined by Connie this time, waited for a speedy four hours on a much nicer day.

We went from front row seats the first time to the last row. (The free tickets are given randomly.) The seats are all good, so it didn't matter, though it was kind of funny. Cosmic payback for the better seats?

The weather was perfect. There is nothing as magical as the sky darkening behind the set, clouds seeming to float by, the lights coming on in the city.

The show was so good that at the end I had tears in my eyes.

It was amazing how seamlessly members of community groups from all five boroughs blended with professional actors on the brimming stage.

Here is the blurb from the Public Theater, which presents this amazing free offering for anyone to see.  I want to go again! 

In celebration of five extraordinary years of Public Works, a Public Theater initiative that invites communities across New York to create ambitious works of participatory theater, Free Shakespeare in the Park presents a re-imagining of Public Works’ 2016 Musical Adaptation of TWELFTH NIGHT for a full five-week run in Central Park. (It runs through Aug. 19.)

Professional artists and two rotating ensembles of community members from all five boroughs will perform together on the Delacorte stage in this enchanting comedy about Viola, a young heroine who washes up on the shores of Illyria, disguises herself as a man, is sent to court a countess, and falls in love with a Duke.

Featuring music and lyrics by critically-acclaimed songwriter Shaina Taub, this very special TWELFTH NIGHT is a unique partnership between two Public Theater programs that exemplify The Public’s commitment to radical inclusion. Oskar Eustis, The Public’s Artistic Director, and Kwame Kwei-Armah, incoming Artistic Director of London’s Young Vic, helm this unforgettable musical about love in all its many disguises.