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 In the old days I would have realized what to do but that part of my brain has been superseded by other things.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

Saturday, August 24, 2019

For starters, birthday kisses from the dog

The first words out of my mouth today (at the crack of dawn, as my father used to say) were, "Go away, it's my birthday," but when the dog who doesn't bark made her intense yelping sound, I got out of bed and got down on the floor for our morning routine.

My arm over her back, her paw over my arm. I rub her belly and back and we look into each others' eyes. That is my morning medicine. I tried to take a photo, as you can see, but she doesn't like it. She went across the room and I tried it again. The sexy attire I'm wearing is one of my father's T-shirts. I had a drawer full of them and gave a few away and now I think I gave away too many because I could wear this one down to shreds. I talk about my mother a lot, but a photo of him pops up at odd
Gray haired ladies
times when I'm looking for something so I believe he's around also. I think he would be (I mean, I think he is) proud of my serve. He was proud of everything I did but worried about my serve. He wanted me to take the racquet back further down my back. I think I finally figured it out, thanks, of course, to serving lessons with George. It's not that hard but I twisted it and put a little slice on it.

Hi Dad!
You don't want to use the word torture for things that aren't really torturous, in light of all the horrible things in the world. Taking it down a level, in the past couple of days, people found different ways to "torture" me. First, on Thursday, when I checked in at Dana-Farber for my checkup with Melissa, the intake guy asked if I wanted them to leave the needle in, after the blood draw, so that it could be used at my next procedure, at 4 p.m., the ECP at the Kraft Family Blood Donor Center. Nobody ever asked me that before, but I said sure. Tina, a nurse who became my friend during my first year or so of ECP, had changed jobs and was doing the blood draws on Yawkey Two. She came over and explained the required needle to the nurse. The nurse got all FARBLUNGET.  Instead of putting in the required bigger needle, she did the usual one and slapped a bandaid on. This was after Tina had called my nurse Deb at the Kraft Center to confirm what I would need. Later when I got there and she asked if nurse number 1 had left a needle in and I said she hadn't, she said, sarcastically, "Of course she didn't."

So I got stuck three times instead of two.

My appointment with Melissa was mostly about dermatology. She said she would try to straighten out the confused state of affairs having to do with three dermatologists telling me three different things to do about my skin. Especially my hands, with each of them contradicting the other on how to deal with the pointillist canvas of pre-cancers and who knows what. But I don't want to ruin the day by getting too much into that.

My numbers were great. My platelets were normal, yay! I used to get the printout but I don't anymore. I know that normal platelet range starts at 160, and when I heard 190-something that was all I needed to hear. If you search the blog for "platelet," you'll see that I've always had a platelet problem.

Dr. Marty came in with a new doc on the block. We gave each other a hug. He explained to the new doc how we go way back. We laughed about what happened at last year's US Open when I had a crazy, itchy, burning rash and cold sores around and on my lips having to do with a "perfect storm" of decreasing Valtrex, an antiviral, and using Efudex, the chemotherapy cream. I wrote him and Melissa, and almost as soon as I sent it, he replied, "Get a selfie with Nadal," because I said that's who I was watching from the nosebleed seats. I wrote back that he was too far, and he said something along the lines of tell him to come up to you. As for the lips, I think he said to go back up on the Valtrex and use Vaseline. He had already given me some good medicine by replying so quickly and making me laugh.

Oh I almost forgot the other "torture."

At occupational therapy, Karen, the therapist, made me a hand brace to open up my left hand while I sleep. I sleep with my hands curled up into fists underneath my chin. Now I won't be able to do it. Together with hand exercises (when I do them), my hand is hopefully going to be able to flatten out in yoga (or any other time I want it to) and my hands will hopefully be able to get into "prayer position," the inability to do so having to do with graft vs. host of the skin affecting my fascia. In general, we don't want it to turn into a claw. I texted the photo to the kids and Katie said that looking on the bright side (if I can sleep) I'll be able to do a better down dog, which is just what I was thinking also.

I was walking around with the backyard birthday photos, at 77 Coronado St., Atlantic Beach, with Jane and Michael Kass in them and now I can't find them. They seem to have morphed into other beach photos. They'll turn up next time I'm looking for something else. They're such good memories. One of these days maybe I'll recreate something alone the lines of what my Vassar classmate, Amy Drake and I, did after college, driving down the coast (all the way from Portland, Oregon!) to LA. Now I should stop and get ready for a little trip to Fairfield for a little celebration to see some of my favorite people and talk to others.

I'm ether 65 or 10. Who knew?

Wednesday, August 21, 2019

Getting a 'visit' from my mother, thinking about Atlantic Beach birthdays

Atlantic Beach birthday 
A week or so ago I dreamt that packages were arriving with my address in my mother's beautiful handwriting. I was confused. I sensed that she was around but was upset that I couldn't see her.

Then last night, she was standing right next to me saying she had sent them. It was so good to see her. Maybe she sensed that just sending the presents wasn't enough and that I needed more. 

I had the dream that I have had before. I want to go to the beach house (in Atlantic Beach) but we can't go there. Someone else is in the house and they won't let us come. My parents say we just can't go there anymore.

The puddles in the streets here in South Hadley the other day reminded me of the puddles on Bermuda Street, riding our bikes through them after the rain. The humidity made me think of driving to Long Beach to get ice cream at Baskin Robbins, my mother getting mint chocolate chip.

Best present ever
My informal research has turned up an interesting factoid: Birthdays weren't such a big deal in some families, but they definitely were in ours. At night: "Wake up to a happy birthday!" In the morning, sleepily, kicking the present at the foot of my bed with the crinkly light blue cover. The present of all presents: the blue Smith Corona typewriter. My sister was jealous about my summer birthday and I was jealous of hers in the winter. I didn't like being thrown in the pool, at day camp, with my clothes on. The parties in the back yard were pretty sweet, though. The trips to Cedarhurst to buy the party favors were a lot of fun. She made a centerpiece and attached ribbons to it and the ribbons went to each place with a little favor on it. The memory game helped me later on in my writing. Study random items she put on a tray and try to remember as many as possible and then write them down.

Later when I outgrew the parties, my parents took some friends and me out to dinner.

My 50th birthday party, here in South Hadley, seems like yesterday. It was more than a year after my first transplant, so I had gone back to work at the newspaper. Paper people and neighborhood people were coming. I was just going to have cake. "You can't just give them cake!" she said, or something like that, and we rushed to the store and got what turned into a big festive spread.

I have also had the usual nightmares. I want to go back to work but the newspaper has closed. Or I go into work and there are more empty desks than there are people.

In real life, though, I've done some dreamy and maybe even daring things. I rode Margaret's e-bike and got the feel of it. It wasn't really daring because it was on a bike path, though daring because my crew doesn't trust me on bikes. A matinee at Jacob's Pillow, to see the Martha Graham Dance Company, with a drive on back roads to and from, was dreamy. A ladies' lunch with Tami/Tamar in West Hartford (our annual summer meeting) doesn't fit into daring or dreamy but I'm into the Ds so I'll say it was definitely a lot of fun.
Headless at Tanglewood

Did I say that I have a big birthday coming up? My sister reminded me that it's cause for celebration. Part of me knows that. The other part has internalized our culture's ageism and thinks I'm pretty much over the hill. At least I can walk up a hill when at many points I couldn't even do that. I didn’t get past Season Two of Grace and Frankie and decided to revisit it and I’m glad I did because it’s making me laugh about all this aging stuff.

On Sunday when we were at Tanglewood, I was taking a photo of the beautiful scenery when a woman came up and asked if I wanted her to take a photo of me. I said OK, sure. She chopped my head off. Maybe she was trying to tell me something.

Wednesday, August 14, 2019

Mass confusion on the scheduling and dermatology front

I thought I had two good things to report on the medical front but it turns out there is only one: I felt better as soon as I got my stitches out of my neck last week. I was free to go to tennis and do yoga without worrying about straining my neck, and I was pain free. Yay!

 The other – which would make a big deal in my life and give a break to my veins – was supposed to be switching to every three weeks, instead of two, for the trip to Dana-Farber for ECP, aka extracorporealphotopheresis for graft vs. host of the skin, aka the light therapy, aka the internal sunburn, for softening up my tightened skin. When I went last week, the Young Doctor, aka the resident whose name I forget, said since everyone had been talking for so long about switching to three weeks, why don’t we go ahead and do it. I said OK. She said she would have the scheduler put me down for Aug. 29th.

Me with "bangs"
Today I looked in Patient Gateway and saw that I was scheduled for Aug. 22nd, which is two weeks. It takes a lot of energy to keep on top of these things. Last time they had it wrong too, unless they changed it on purpose without telling me. Instead of scheduling me for two weeks from the previous time, they scheduled me for three, then went back to two. I wondered if they had switched me to three without telling me but then I wondered why it had popped me back to two.

I’m also trying to coordinate a checkup with Melissa with the ECP days. So this matters. As I’m trying to write and/or pitch some freelance stories, I’m distracted by this confusion. I wrote her that maybe they were just trying to test my mental facilities to see if I caught the mistakes. There should be a better way. I think the name of my old tennis team, Mass Confusion, could apply to some of this stuff.

On the dermatology side, the Mohs surgeon told me to apply a combination of creams all over my face, to treat a couple of squamous cell cancers in situ (on the skin) and head off other ones. It is Efudex and Calcipotriene , which someone online summarized as giving the Efudex superpowers. It caused a side effect of a fungus on and around my  lips. They burned like crazy. When I went to get the stitches out, my internist gave me a cream that made the fungus go away. I called my primary dermatologist to ask if I should still apply the cream combination. I left a message but didn’t get a return call. I stopped applying the cream combo. I guess if I want a definitive answer I’ll have to call the office again or email my dermatologist.

At tennis today, after I had put my pill box down on the table (because I had taken some pills on the way over) George asked how many pills I took a day. I guess I could count. I think it’s maybe 25. I said somebody called me a chemistry experiment. 

Also in between things today I had fun texting with Katie about maybe getting bangs. I took some hair from the bottom of my hair and put it over my forehead to show the effect of bangs. Maybe Katie and I will do it together. Also on the so-called beauty front, remind me to never get another gel manicure. It totally wrecked my nails. I did it for one of the two spring weddings I attended and thought it would be OK, but a few of my nails split in two and broke down below the nail line. I’ve been told it might take at least six months for them to recover. When I showed them to my dermatologist at the last visit, she said another reason not to do it is that you’re getting UV radiation when they bake the color on. I hadn’t thought of it but now I’m aware. 

My medical people have remarked on how strong my nails remained throughout everything I’ve been through. Leukemia didn’t ruin them, but a visit to Lucky Nails in Northampton did. That will teach me to be a walk in. If I had read the reviews, I wouldn't have gone. Well it is kind of weirdly funny to get unlucky after a visit to Lucky Nails so maybe I can laugh about it and after all they will grow back. I thought of going in and showing them what happened but what are they going to do? Give me my $25 back? Actually I think I paid an extra $5 for the gel. BTW it was my second and last time.

Monday, August 5, 2019

When the worst part is the healing

Not a pretty profile
Ellen, the physician assistant at ECP (the light therapy), said that my Mohs surgery for invasive squamous cell carcinoma was on a small area and would be no big deal. All things considered, it is definitely no big deal, but for the week in which it is healing, it is.

For a small spot that was barely visible (the resident called the BF into the exam room to make sure they had the right spot), it must have gone relatively deep. It only needed one "pass," but it required internal stitches and a running stitch with maybe eight loops. 

Though my blood pressure was a little high, I wasn't worried about the procedure itself. Dr. Schmultz, at the Mohs surgery center at Brigham and Women's Faulkner Hospital, in Jamaica Plain, does such a good job of giving the anesthesia that you barely feel it. Also it was quick, and we chatted for most of it about such relevant topics as making sure I was taking niacinamide (same as nicotinamide) which has been shown in studies to cut down on skin cancer risk. I asked about a product, Tru Niagen, which has the same active ingredient and a big anti-aging marketing campaign. She said it was all the same and she wondered how long it would take for someone to make money off of it.

The anesthesia had worn off by the time we got home. It started to ache. As directed, I took 10 mgs. of oxycodone. It helped with the pain but it affects my sleep. You would think it would knock a person out, but it puts me in a strange state. I took a sliver of Ativan. I tried to read but couldn't focus. I doubt that I got much sleep.

Since then it has hurt on and off. I don't remember the other healing processes being as uncomfortable. Maybe I just forgot. Maybe it really is more uncomfortable due to positioning which causes the area to stretch every time I move my head. I haven't played tennis or run and have just been walking. Yesterday and today I went to yoga because I felt like I needed more. My mental state is not great. The other night, when I washed it and applied Vaseline and a new Bandaid, I must have activated something because it itched so much I thought I would never get to sleep unless I took a Benadryl. I took the Benadryl and woke up hung over. I'm looking forward to tomorrow, when I get the stitches out.

Here's a little something I wrote about having four stem cell transplants. I figure I've had more pain in my life than the one I'm having in this healing process. Still, the pain you have at the moment is the one that hurts and it doesn't make it much easier to think about times that were worse.