Thursday, September 26, 2019

Mini vacation, much beauty, no accident...sort of

Duck Harbor sunset
The three nights, four days, in Wellfleet isn’t totally over so I don’t want to jinx myself, but at least the bike part is over and I only hurt myself a little. No, I didn’t fall off like I did the past two years. I don’t know how it happened, but when we were going up hills along the beautiful Ocean View Drive, one of the derailleurs came loose on the collapsible Birdy Bike and the chain dug into my leg. It was at a point when I COULD have fallen but I steadied myself and got off and my traveling bike mechanic got it back in place.

I’m not sure how far we rode, maybe 10 or 12 miles, with the hills making it more difficult than a flat of the same distance. We stopped at a couple of beaches, first at Newcomb Hollow, and looked somberly at the memorial for the 26-year-old surfer killed there last year in a shark attack. On a more cheerful note, we talked to a couple from Long Island, and with the woman I reminisced about back-to-school shopping in Cedarhurst and buying a plaid dress with my mother. I want to call the store Bib and Tucker but I might be making that up.

Down by the bay
I joked that the first full day I did a triathlon. First the bike ride, then a run on the beach, then a swim in the bay. I was hesitant about going in but a man and a woman who were in the water said it was warm, and someone else on the beach said, “No sharks.” That seems to be what people are thinking about these days. We talked to the Rec Department guy at the tennis courts, and he said he noticed over the summer that the crowds seemed a little diminished. Then some cute little kids showed up for soccer practice. The courts are next to the playground where Nell and Callen had such a good time this summer. We thought of “hitting a few,” as my father used to say, but we figured we could do that at home and we should do other things here. At low tide I found a crevice between two rocks and enjoyed watching the clam boats. You can’t do that at home.

2009, Eastham beach
The sunset at the bay was spectacular. As people arrived to watch it, I thought of watching the sunset at the bay in Eastham. The crowd clapped in appreciation in Eastham; over here in Wellfleet they don’t seem to be quite so ebullient. Different cultures, one town away, who knew.

 Down at the Eastham beach, Katie and I took the same photo on a log over a period of several years. One year I was recovering from lung surgery, before my first transplant, and they couldn’t leave me alone so I went on a vacation that Jim had planned with the kids. We did it other years just because it seemed to work. I found a photo of us recreating the pose in which we looked over our shoulders. It was in August, 2009, after my fourth transplant. My hair was a little different.

Thursday, September 12, 2019

Talking about good reasons to ride

Me, left, with Margaret
When I looked up A Reason to Ride, in order to get the link for the background on the fundraiser for cancer research at Beth Israel Deaconess Medical Center, I was pleasantly surprised to see the the 10-mile route was really 11.8 miles. As a certain friend has remind me, the distance isn't what matters. I have a thing in my mind about the old 80-mile bike trips with Rook .(Did we really do that or am I overstating? I'll have to check. ) But that was then and this is now, and the good news is that:

  • Starting in Danvers, I did the scenic route on a sunny day with my good friend Margaret and a group of others for a good cause, cancer research,
  • I'm not exactly in biking shape, but I went up the hills without getting off, with exertion manageable enough that I was able to chat with Margaret for part of the ride,
  • I realized I was riding with one brake (the back) and nothing bad happened,
  • At the end, I had fun eating (part of) a giant Fuddruckers hamburger and schmoozing with people who had ridden or walked. 
  • I made a financial contribution.

At the end, one of the "real" bikers looked at my front brake and fixed it by simply reconnecting two parts that had come apart. In the old days I would have realized what to do but that part of my brain has been superseded by other things.

The ride choices were 10, 25 and 50. When we were done, I said I thought I probably could have done 25, which is as much a factor of things people might automatically say when they finish (I could have run faster, could have ridden farther) that could spur them on to do better, as it is a factor of nostalgia. (And perhaps self-deception?)

On the other hand (when I say this I can still hear my old boss saying, "on the other hand, I have five fingers) I know that 11.8 miles is pretty good considering that at one point I couldn't even get out of bed or walk the full length of the nurse's station. And it was a fun day doing the almost 12 miles.

I enjoy the feeling of riding a bike, the breeze in your face and all that, and will consider this a good sign for doing more of it. Some of my team members aren't fans but now that I showed I can get through a whole ride (kenahora)  maybe they can let that one go.

I got an email from Safe Passage about signing up for the Hot Chocolate Run, which is coming up on Dec. 8, so I need to put down my tennis racquet long enough to do pay attention to my running, which I should do anyway or else I might have to change the name of my blog from Running for My Life to Tennis Playing for My Life, but it doesn't have the same ring.

Thursday, September 5, 2019

'Bernie' waves goodbye to summer; I get my blood 'sunburned'

"Bernie' waves goodbye to summer
In Atlantic Beach, you might have thought that the summer ended on July 4th, from the way my father sounded so sad when he raised the flag and said, "Summer's over." It was a routine. My mother would say, "Al..." She didn't need to say much more.

Of course even after Labor Day, it isn't actually over, but the melancholy that washes over (most of) us makes it feel that way. Though I remember Mimi having me write a story, back at the paper, about people who loved the crunch of acorns under their feet and felt revived and relieved when summer officially ended. The other day I dreamt that I really wanted to drive down to the beach to see my parents, but I didn't do it because I knew the Labor Day traffic would be too bad. It didn't occur to my dream self that they wouldn't be there.

They had framed a New Yorker cover that I hangs on my wall now. Their friends Bernard and Muriel Glazer loved Fire Island. After Bernie died, this cover came out. The man waving goodbye to the ocean bears an eerie resemblance.

Car food
Today was my first ECP visit with a gap of three weeks, as compared to the two that I have been doing for a while. The last time I tried to extend the time between the sessions for the light therapy on my blood, to lessen the skin-tightening effects of graft vs. host disease of the skin, my stomach started to harden again. That was a while ago. So far so good. As previously noted, I don't really mind going to the Kraft Family Blood Donor Center except for the part about the needle in each arm, and today, the added element of blood dripping down my left arm and Rosalie having to thread the needle in because the needle wasn't cooperating in drawing blood even though it was in. I had missed some of "Sharpie-gate" so she updated me. They REALLY dislike Donald Trump. 

I didn't have much time between tennis and the time that a driver would be picking me up, so I made a "picnic" for the back of the car. The driver was interesting: a minister transplanted from Jamaica to Worcester, he was listening to Radio Jamaica. (I wrote a stream of thought about it on Facebook.) On the way back, the Jamaican news seemed to be obsessed with body count in the Bahamas. Watching it on the news, and reading about the devastation, and getting incensed by the climate deniers (and wondering what exactly they're denying) was horrible enough. But the announcer kept talking about bodies piling up and more refrigerators needing to be found to store them. I asked him to change to local news. He put on Christian broadcasting. 

I listened to, and watched, everything on the US Open app and talked on the phone. I forgot to bring headphones and so I held the phone up to my ear. I tried a meditation app for public transport but quit as soon as it said to find a place to lie down. Now I'm eating chocolate ice cream with Evelyn Hatch's coffee cake mixed in and thinking of calling it a night.

Sunday, September 1, 2019

From dermatology drama to fun day at the US Open

After a great birthday followed a day later by going to Jacob's Pillow on a beautiful afternoon to see the Boston Ballet, the theme of the next week or so, leading up to another fabulous but sweaty and exhausting day at the US Open, was dermatology.

Crowd behind us at tennis center
A spot on my neck had been driving me crazy. It looked funny. It stung. Not funny as in ha ha, but funny as in different from my other squamous cell cancers. I was frustrated by a lack of response to two calls to my dermatologist's office. By that I mean my primary dermatologist. As I wrote here, I actually have two. And if you count the Mohs surgeon, I have three. Sometimes I'm reminded of my old tennis team, Mass Confusion.

I wrote what my mother used to call a "blast" letter. In her beautiful handwriting, she wrote to complain about a service not provided as promised or a product falsely advertised or some other problem. She usually got an answer, and she sometimes even free stuff. Almost as soon as I wrote the email, on a Monday morning, saying how frustrated I was, I got a call back saying I could come in the next day.

New glass for my collection
Not wanting to ask for a ride every time I need some frickin' spot looked at, I drove myself in (after tennis of course, because I didn't want to skip.) I should know by now, but because I can't always trust myself, I put in 221 Longwood Avenue. Usually I go to Brigham Dermatology Associates at the easier-to-access location on Boylston Street, but I had to take what I got. (In a conversation at tennis, some of us discussed my possible need for a closer dermatologist to look at things like this. New England Dermatology, in Springfield, came up, but I said no, because although I had liked my doctor there, when I called up after my first transplant and said I would like an appointment, they said three months and I got in faster by going to Boston. I could try Cooley Dickinson because it's in the Partners system, but that is on the shelf for another day.)

The appointment was at 4. It is one office where I always wait. I think I got there at around 4:15, so I figured I was good. Nothing looked familiar. What had happened to the medical office building? I drove back and forth. I parked the car. I asked a passerby. A fuse had blown in my head, just like way back at 1200 Fifth when you had one too many things on and a fuse blew and you had to call the Super. There wasn't any Super. At least I said to myself, when I went back to the car to regroup, "This is when accidents happen," meaning, "Don't drive around like a crazy person." Suddenly it hit me. I was at 221 Longwood in Brookline when I needed to continue for about half a mile on the same street to get to 221 Longwood in BOSTON.

I drove to the right address and ran in. By then I was so late, almost an hour, that I didn't have high hopes. But I had arranged to stay at the D & D Lodge (Diane and David's) and was determined not to leave town without seeing some dermatologist in the Brigham Dermatology group the next day. Still I held out a little hope that my friend (Dr.) Jen Lin would see me.

The receptionist said that Dr. Lin was doing a procedure and wouldn't be able to see me. I looked down the hall. There she was. I caught her eye and waved apologetically. Then the mature thing happened. I started crying. By writing it sarcastically, "the mature thing," I know I am dissing myself and saying I was acting like a baby. Actually, I was probably understandably upset. I had been in pain, driving through Boston traffic by myself. (Question for next time: Ask for a ride?) The receptionist said Dr. Lin would see me after all. I could have hugged, first the receptionist, then the nurse, then the doctor.

I told her how sorry I was to be late. I knew she had a baby and a toddler at home and would want to get out of there. She said she knew how far I had driven and it was OK. She is very beautiful and always wears beautiful clothing. (One time I went home and ordered the same pair of shoes that she was wearing. ) I told her I liked her dress. For some reason that took my mind off my problems.

The thing on my neck was "just" another squamous cell in the making, or, in the skin cancer terms, an AK, or actinic keratosis. So was one on my chest and a few more on my neck. She said I could apply my new combo of Efudex and calcipotriene . Or she could zap them. I said please zap, meaning, use cryosurgery. She also gave a hard freeze to one on my scalp. I said I didn't know why I picked them. "Because they're annoying," she said. That made me feel better. She knew I was going to the US Open and would be in the sun, and she said that after it was over, I should apply the combination cream, which has shown good results, to my neck and my hands. I was having a personal problem. While she was zapping, I told her about my problem. Did I say we go way back? She gave me some advice and calmed me down about that too.

On court interview
I am not a fan of the chemo cream. Nobody who applies it is. The addition of the calcipotriene gives it super powers, I've been told. When I applied it to my face, I got a fungus on my lips. People who use it say it makes them irritable and has other side effects. I know this personally and because I wrote about it.  But I'm going to do it to stave off more skin cancer.

The reason she said to wait until after the US Open was because last year, I had had a problem with a reaction, also on my lips.  When I saw my friend Dr. Francisco Marty the other week, I laughed about how he had said to send a selfie with Nadal. This year we saw Roger Federer. I was going to write to ask him if he wanted a selfie with Roger, but the blowout against Daniel Evans was going so quickly that I didn't want the distraction. Our Arthur Ashe seats in the upper level weren't great, but we didn't go all the way up and were close enough. Last year, I jumped when Donna said, "I see Roger Federer" while we were walking around the grounds, but, alas, it was his cutout.

Seeing double? No, it's the Bryan brothers.
It was another great trip. Each year we seem to finesse even more. We knew everyone would want to see Coco Gauff play doubles so we didn't try. So we headed to Court 17 and got good seats for the first doubles match, which we thought Bethany Mattek-Sands and Coco Vandeweghe were going to win (but they didn't). No matter who you're watching on the outside courts, it is just fun to see how hard they hit the ball. We left when we got too hot and headed to Ashe to see Roger. Later we prevailed against a beer-toting obnoxious guy (really the only obnoxious person in the crowd all day) who wanted to push past us on the line into Court 11 later to see the Bryan brothers. Said he was bringing a beer to his wife, who was holding a seat. He was the second guy who said his wife was holding a seat. I said my wife was also holding a seat and besting him in the obnoxious category, added, for good measure, "That beer will make her dehydrated anyway."

It was great to see the "old" twins (they're 41) win. Later, I appreciated it even more when reading about Bob's comeback after hip surgery. We also tracked down Joe, who is working there on behalf of IBM. As in previous years, I was just kvelling to see my "preemie" all grown up and doing such cool work. A day on the pavement, from 11 a.m. to 7:30 p.m., followed by the walk through the train station and along Citi Field to get to the bus, was pretty exhausting, so much so that in the morning I couldn't think of getting up to go to tennis, but I loosened up after hobbling down to Serenity Yoga.

I'm sorry to sound so vain, but I complained about my wrinkles in the photos with Donna and Joe. Sometimes I forget that it's pretty cool that I've lived long enough to have wrinkles.

Then after a nice young person took a selfie at a fun gathering last night, I said I didn't look so bad after all. She said it was all in the light.

Back to the bus trip...The light of course was all gone by the time we got back to Enfield a little after 10 on Friday. I hadn't even noticed the time passing on the ride back. Sleepily, Donna and I had talked almost all the way back, reliving our "good work" of navigating the grounds without mishaps and reliving, with the good humor that hindsight can bring, our first trip, in 2013, when we didn't know where to go and I was sick from something or other and dehydrated after drinking maybe two of the special Honey Deuce  cocktails. At the end of the day, our friend Deb was running ahead to get to the bus and trying to get Donna to get me to move more quickly and maybe even put me into a cart.  Donna said something like, what am I going to do, carry her, and then we finally got on the bus and it wasn't a pretty picture and I assume I wasn't able to enjoy the USTA bus tour brownies like I did on Friday along with everything else we did.

With friends Molly and Betty Czitrom