No good ride goes unpunished

Backpack by Great Bags

If you're thinking, enough with the rides already, you're in luck because I'm not scheduled to go to Boston until three weeks from now.

Yesterday was one of those days when you're in a bad mood and you can't exactly figure out why. It didn't take long to realize it was from spending a total of more than six hours in the car the day before. Well even more if you count my mini trip to Holyoke for a checkup at 8:30 a.m. with a glaucoma specialist. (Eyes fine, need to be checked because my mother had it. That was a mess. Ophthalmologist, a family friend, told her she had cataracts. When she went for a second opinion the second doctor said, "Mrs. Gordon, you don't have cataracts, you have glaucoma." It made for a lot of anxiety in the last years of her life. She used drops to keep it at bay but she was an artist and when she started to lose a little of her peripheral vision she was obviously petrified. So that is why I get my eyes checked.)

Then almost as soon as I got home it was time to get my second ride of the week to Boston. My doctor had put instructions in my file for me to ride alone due to some of the upsetting experiences I had with other passengers. Nobody pays much attention to that (notably Kenny, who taunted me by telling me he didn't care what I said, he was going to go out of our way to get another person), but the driver called and said she saw the note and the other passenger was very lovely and was it OK. I know this driver (a nice woman from Jamaica), so I said of course it was fine.

The logistics were not, though.

We went first to Mass Eye and Ear, so difficult to get to that nobody goes there, and then to Dana-Farber. It isn't that far in distance but it is in time. It has a tiny little drop off area on a small street. It's easy to miss (which I have done) and when you miss it you have to drive around for at least 15 minutes to get back.

The drop off was OK but after the driver picked me up at 3 and we went back to get the other person, she missed it, and we circled, and since it was Friday of Columbus Day weekend, it took an hour to get out of Boston.

Then it was practically bumper to bumper for much of the way home. The trip took more than four hours. When I got out of the car I was so stiff I could barely move.

I forgot to say that the appointment with Melissa, the whole point of the trip, was fine.

We had a lot of things to discuss, though, which brings me to saying that I have writing projects to do but sometimes get waylaid by my other job: managing my health.

The three squamous cell cancers, (two will be getting Mohs, the other hopefully will respond to cream); an endocrinologist appointment to me made to check on how my bones are holding up (a little dicier than most women my age because of the prednisone); and the matter of how my skin will do with ECP (the light therapy on my blood) every three weeks instead of every other.

You can stop here if you don't want more details about my skin.

The problem first manifested about a year and a half ago with dimpling on my thighs and stomach and a tightening of my skin in areas that I didn't even recognize until the procedure started working. The skin on my abdomen was especially strange, like a little bowling ball or an early pregnancy.

That softened up but it is still not normal. I tried to describe it to the nice doctor who came around on Wednesday, and he said some people say it feels like a band around your body. And that is how it feels. I don't like to wear anything tight but that is how my jeans feel.

I found some good medicine yesterday in going with a friend to the Paradise City Arts Festival. I haven't been since back in the day when I covered it for The Republican. Looking at all the beautiful things was a real picker-upper. I have been wanting a backpack, especially for when I travel and I sling a bag over my shoulder and immediately feel the effect on my neck. The one I had in mind is made by the same designers, Great Bags & Maple Leather Company. who made a shoulder bag that I have. I could have bought it on line but I wanted to see them in person.

I consider it almost a medical necessity.  I also bought a beautiful dress. If you know me you can probably guess the color (purple). I hope I have a few clear weeks when I can do the writing I need to do to pay for what I bought yesterday.

In any case, going there with a friend cheered me up. And it was only about 20 minutes in the car.

On way to Dana-Farber, joy of low expectations

Little bit of color: my mom's painting on left, my flowers, and Matisse print

When a friend asked how my ride was yesterday and I said that the driver was pleasant and actually looked me in the eye and said hello and asked how I was, she said, "Nothing like setting a low bar."

Indeed.

It almost turned into one of those days. I didn't get the confirmation call the night before, so yesterday I called MART, which arranges the rides, and stayed on what I thought might be an interminable hold but which was short for them – about 20 minutes. The call-taker said I had a ride for three weeks from yesterday but not for yesterday. I was sure I booked that ride. I told her the woman who booked it sounded confused, because she asked me several times. Luckily it was only 9:15 a.m. or so and the person who took my second call said she could find me a same-day ride, but I had to answer my phone or they wouldn't take me.

So I went off to tennis and kept my phone in my pocket and sure enough I got the call. It came in the middle of a point but I had already said I might have to stop, so that worked out and we picked up where we were.

The ride came on time. And the driver even called ahead to say he would be a few minutes late but that he was on his way. A minor miracle!

When we got to Boston, I asked him if he liked sports, and when he said he did, I offered to leave my New York Times sports section, and all the rest if he wanted it, while he waited for me. He thanked me and said he also had homework to do: studying for the handcuff training that is part of becoming an auxiliary police officer.

Once at the Kraft Family Blood Donor Center for the light treatment on my blood (my current shorthand for ECP) my good fortune continued. New machines make the procedure faster, only by a little, but that shorter time makes a difference. My nurse yesterday, Tina, has become a friend.

We are on the same page about the election, as was the nurse working next to us. I had introduced Tina to fivethirtyeight.com and so we talked about the trends and forecasts and the various forecasting methods that The Upshot and other sites use. (Explanations courtesy of Ben Doody.) Looking at the electoral map, we looked at the big swaths of red in the middle of the country and asked how can they.

I found some stories that I had read and sent her the links and read her some analysis of the VP debate. For her part she was still cracking up about Alec Baldwin's Donald Trump on this past Saturday Night Live's Cold Open. I went back and found Darrell Hammond's, which I said I liked better because it was a little more subtle. I also found some of the SNL primary debates, which I watched and the nurses peeked at in between doing other things.

Thus the three hours passed, with us looking at funny videos and serious stories. I don't eat much when I'm there (they have a lot but I took my time eating one bag of Cheez-its) so I took a handful of snacks and shared them with my nice driver. I dozed off a little and was home before I knew it, not annoyed at anything.

Memories of my old country and first alma mater

When I say in these parts that I'm going to the Old Country, some think it's Poland or Ireland, but for me it's New York, N.Y., where I am now for this morning's services at the 92nd Street Y.

A lot of people have been sharing the beautiful video the Y produced for Rosh Hashanah, and I have been commenting that I'm proud it's my (kindergarten) alma mater. Actually nursery school and kindergarten, the green room and the red room.

I can remember playing on the roof, being in dance recitals in the auditorium where services are held, and pledging my love to Bobby G (I actually think we were sitting in a toy closet, but how can that be?) and Bobby returning my love so that we told our mothers we were engaged.

Later while in the auditorium for services, before feminism was "big," I remember my father and mother looking at all the names of the great men in history in panels on the ceiling and remarking that there were no women. My mother (and the mothers of my friends) was an early feminist without calling herself that, testing trucks in the army, running a jewelry business with my aunt, and with her mother, opening the jewelry store, Lynne's Speciality, which was my home away from home, 1288 Lexington Avenue, not even a 10-block walk from the Y.

Rosh Hashanah dinner at 1200 Fifth

We did a lot of things there besides going to services. I took dance classes there and have a strange memory of practicing a blind dance in the big blackout and having the teacher calmly say, well, we can open our eyes and still practice our blind dance because we won't be able to see.

The teacher made a mistake in letting me leave in the darkness to walk down to the store at the same time my mother had left looking for me. I remember being in a panic when our paths crossed and I couldn't find her but then going back and being relieved when she came back to get me.

The last Rosh Hashanah with my mother was painful. The lung cancer that appeared pretty quickly had progressed and totally changed her looks. Diane warned me because she had been there earlier. When I walked into the apartment for our erev Rosh Hashanah dinner, I was shocked at how pinched she was.

Many of us probably have that memory of our parents at the end. But I like to think of my vibrant mother and all those Rosh Hashanah dinners at the apartment and great years at the store and at the Y, dancing on the stage and holding hands with Bobby G and, as the diploma says, successfully completing the following courses: block-building, bike-riding, fingerpainting, modeling, music, pasting, horticulture, singing Shabbat-Shalom, living and laughing together, which I'm grateful that my mother had framed for me. And grateful for all the Rosh Hashanah memories and for Ben still being able to go to the Y with me and for cousin Jeanne and husband Bruce putting up with me spending the night at their apartment and for the pizza dinner we had which even though not traditional Rosh Hashanah dinner still had the spirit because we toasted to a good New Year and also of course grateful for my other children here with me in spirit and the rest of my family from and wishing all a healthy, happy, and peaceful New Year.

The Minneapolis trip I'm not telling you about

At potluck dinner in Minneapolis

Nobody wants to hear too much about someone else's fabulous vacation (like looking at all the photos, seriously?) so I will try to summarize my great trip to Minneapolis.

I loved staying at Lonny and Andy's Airbnb for the second time, and I ran around nearby Powderhorn Park, (or did a slow jog, actually, trying to see how my toe would react), had dinner with Marysue and Eliza while Katie was working, had some "free time" to write while listening to wind chimes in Lonny and Andy's backyard, took photos of their cute little dogs, and with Katie, walked around beautiful Lake of the Isles (a lake or a park around most every corner!) rode bikes from Dinkytown to Minnehaha Falls, went to an artsy neighborhood and saw "Ragtime" at Theater Latteda preceded by dinner at the bar at Northeast Social where we chatted with the cute bartenders, met the chickens at the house that Katie shares with a group of cool people, curled up on her bed in her cozy room and said I might move into the attic, spent a little time at that house during one of their potluck jams, ate good vegetarian food, and did a little jitterbugging in the kitchen with Katie while talking to one of her interesting friends and listening to the acoustic music and old songs coming from the living room.

Tiny and Zeuss

It is a little like the house that Lise Gescheidt and I shared in Brookline with a group of other grad students, law students, med school students and others at that stage of life (shared meals on a pingpong table in the dining room) only in Katie's house their bookkeeping is all computerized and not scribbled in something called "The Books," and they actually want to do chores and keep the place clean because they motivate themselves by jamming through it while at our house many were kind of disdainful about chores (chore wheel, bah!), and I thought my parents would pass out when they visited. But I liked it a lot and have good memories and am glad that Katie has found her people, all committed to good causes. And I almost fell out of my chair at ECP (which would not have been good because I had a needle in my arm), when I saw Lise across the room with her husband, who was also being treated, and realized it was the same Lise who I lived with in said house, and we entertained the nurses with tales of the goings on in that Victorian.

In the department of strange happenings, I was telling Marysue about the Michael Brecker connection to my fourth transplant (without him going public with his search for a donor, I would never have gotten Denise), and she said she had been wondering what music to play for me, and it was the late musician's "Nearness of You."

She couldn't find it so we listened to him on Spotify, but later when she found it she texted me the cover and said we'd listen to it the next time, which might be sooner rather than later.

While in the airport waiting for my flight home, I got a call from the dermatologist's office. All three biopsied spots are squamous cells. The nurse said she would all over to the MOHs center to see if they could do three, adding she never had to ask that before. It's so nice to be different. (Not.) Then she said I might be able to just put chemo cream on my nose, so that is what I'm going to do. When I got back home I made the appointment for the hand and forehead. Though something I am used to it is still a downer. I shook it off, though, on the tennis court on Wednesday, playing on after the clinic for a total of about three hours in cool weather perfect for playing.

The ride not taken, the biopsies done

Since you might be tired of hearing me complain about my rides, I'll try this one in reverse for a change of pace.

This morning I call MART,  which arranges the in-state rides for patients, and get quickly to the complaint line. This is already a relief because it is hard to get through on the other line when booking rides.

Call Taker: When did the problem happen, on the way there or on the way back?

Me: Neither. I had to drive myself.

I explain, I waited so long for the driver that I had to leave.

My cell phone record comes in handy. He was supposed to pick me up at 9:30 for an 11:15 appointment at Brigham Dermatology Associates in Chestnut Hill, not all the way into Boston so that was enough time.

He calls at 9:25 a.m. to say he is in Springfield in traffic and is going to be late. I say you people need to leave earlier, that's five minutes from now, but I will wait.

9:44 a.m.: I call him and leave a message, where are you, but he doesn't call back.

9:53: a.m.: I call again.

9:54.  Call again. No answer. I get in car and head out to Boston.

10:10: He calls and I can't understand him but I am already on my way.

Call Taker: How did you get home?

Me: (Pause, full of meaning, as in a Harold Pinter play)

Me: Well I drove myself there so I had to drive myself back. I was bleeding and the three places that I had biopsied hurt, which is why I set it up to not drive myself.

Call Taker: Thank you. Your complaint has been filed. Have a nice day.

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Ok, so I had been bleeding not at that moment, but not too long before. I would have considered spending the night but Jane and Jim are away and I had to get home to Maddie.

On my way home from 850 Boylston Street, where the Brigham and Women's dermatology office is located, I made my usual stop at the Waban Starbucks and got a cappuccino. Around Framingham I realized it wasn't enough so I got off and went west on Route 9 and got another shot in Southborough.

Yes I really did that. It was either spend the time making the detour or spend the time pulling over to take a nap.

It had gotten late, and the reason was:

I have been known to be spacey but not this time. I had immediately written the time and date on my calendar when I made the appointment a couple of months ago. It was not a convenient week because I did not have the light therapy, but I knew I needed at least two spots looked at.

But when I got there, it was not in the books. Luckily they were able to fit me in at 2:30. Luckily I had a newspaper and a book. I leaned my head against the wall, took a little nap, read a little and ate lunch and it was time for the appointment.

I called a friendly neighbor, Joan Vohl Hamilton, who was nice enough to go in and take care of Maddie at the time I would have been home.

The practice had a new doctor or else I might have had to wait even longer, with two out on maternity leave. She said I was going to hate her but she had to biopsy three spots. I expected the two on my face (nose and forehead) so I wasn't surprised, but I thought she would just zap off the spots on the top of my right hand. But she didn't like that it is raised and painful. So she dug a little hole and off it went.

Can I still play tennis? I asked.

I thought she would say no, but she said yes.

Usually they give me a packet of new vaseline and bandaids. But the nurse wasn't getting it so I asked.

"Don't you have bandaids at home?" she asked.

Something must have been in the air yesterday.

Blood started to pour out of the spot on my nose. She sat me back down and put pressure on it.

"I just need them so I don't have to go to the store right away."

She gave me some in a bag. And one vaseline.

I was supposed to keep the bandaids on for 24 hours, but when I got home I noticed that the one on my nose had fallen off, exposing the little puncture. The place where you get a pimple before the high school party.

I felt bad for Maddie so I took her for a walk.

When I got home I called some people. The spot on my head started to bleed. After about 15 minutes I paged the doctor. He said to put a big wad of gauze on it and if it didn't stop, go to the emergency room.

I was lucky it stopped because I had already taken a half an Ativan and a half of an oxycodone. (5 mgs. each.) Before you think something about the oxy, I will repeat that I don't take it too often but that I do take it sometimes because it is better for my system than Tylenol (liver) or Advil and the rest (kidney and some other reason.)

Today was my day to volunteer at The Literacy Project but when I woke up I knew it wasn't happening.

In a week or so I will get the biopsy report and assume I will have to go back for at least one Mohs.

This morning I made a strong cup of coffee. But I am not kidding, I lost it in my house somewhere and had to make another.

On the positive side: I didn't cry.

And now I will get new skin over a spot on my hand that a previous dermatologist had over-zapped, causing it to lose pigment.

I'm sure that when people shake my hand, they don't think, that woman has no pigment in a spot on her hand, but it is one of the spots that is particularly bothersome to me.

Also I have a beautiful mug.

Playing tennis, tasting wine, standing on chairs

Tennis friends at Black Birch Vineyard

Last night I stood up on a chair to get a bud vase for a pink rose that a tennis friend gave us to mark the year anniversary of her mother's death. We all raised a rose to our mothers, on this earth or not, but always with us.

For a moment I considered whether I should do it but then realized that I could. Normally this would not be a big deal, but I thought back to my progression from hardly being able to stand up and sit down in a chair, to in no way having the strength or balance to climb up on one, to now having strong enough leg muscles to be able to do it.

I put the rose on the table next to the zinnias I picked from the garden. I can't believe how tall they got. One is almost as tall as I am. When I cut them I could hear my mother say, "Don't be afraid to cut them," meaning make sure to bring them in so you can enjoy them. At the beach, she had flowers everywhere. She was especially proud of her roses.

The rose-giving happened yesterday at Black Birch Vineyard in Southampton. It was our second year going to this beautiful place. We brought a picnic to have along with wine: either a glass or a wine tasting. I remembered the wine I liked from last year but did the wine tasting anyway. I'm not a wine connoisseur but had fun learning the proper way of tasting. I did two of the whites twice because I didn't want the reds and played a game of turning my back and guessing when I sipped. I got the Epic White right (pear tastes and other fruity nuances but not too sweet), yay, and went ahead and bought a bottle. Or two.

Flowers keeping company

Before we went, we played tennis at the Rogers Field next to Holyoke High School. It was the sister teams, Holyoke's Paper Dolls and Valley Dolls from the summer league. I'm not playing as much team tennis as I used to, but I still like playing some because otherwise I would miss the camarederie and little outings like these.

But informal tennis like we played is in many ways more fun.

For example, when an opponent lost a game on a double fault, I made up a rule: no double-faulting to lose the game.

Similarly when we play at the Canoe Club, we occasionally ask for another chance if we do something really stupid. You wouldn't do this all the time or else we would never finish. But on Wednesday the wind totally took a ball that was coming towards my backhand. Since I had been working on that shot (no bent elbow), I asked for another, moved up closer, and made the shot.

This would be a week off from going to Boston, but this morning I have a dermatology appointment. I have some new spots, and I would be pleasantly surprised if at least one or two were not squamous cells.

Stranded... in my own house

I couldn't complain about the person driving me to Boston for my appointment yesterday because I never saw him. I waited in my usual spot looking out the window at my driveway and checked my phone to see if I had missed a call.

I called the company, Sonic Velocity (one of the good ones) but it went straight to voicemail. I called MART, which arranges these in-state rides for patients, and got put on hold while the call taker checked. She said the driver had left because he didn't see me. I said I never saw him. She said he was waiting at the foot of the driveway. I said we've been through this before. The first time this happened more than a year ago when a driver left without me I said it's a state highway and the door is on the driveway side. I said this company has been taking me for more than a year and they know that. She said it is a curb-to-curb pickup and they don't have to call me. It is only a courtesy and if I want it I have to request it. I said I did request it. She said there was nothing she could do but put me on standby, in which case I would need to wait an hour.

What would you like me to do, she asked. I started crying. If you can label a type of cry, I guess it was a combination anger and frustration. I hung up on her. I missed my appointment. Still crying, I called the Kraft Family Blood Donor Center. Diane, who books the ECP -- or photopheresis -- appointments, was very nice. I rebooked for today. I am going to drive myself.

So, OK, it's not life or death. I can do it today. I had arranged things so I could do it yesterday as planned and then had to rearrange them. But what if someone REALLY needed to go to an appointment the same day? They would be screwed.

I'm stoic (for the most part ) about the big things, but the annoyances like this get me all worked up.

People have asked why I don't just drive myself. Because it's a lot to do in one day, and you lose a little blood in the process, and I get tired. Depending on how I feel afterwards, I'm going to either sleep at Margaret's or come home. I have things to do tonight and tomorrow so I would rather come home.

I put a half humorous post on Facebook saying what had happened and asking if anyone wants to drive me to Boston and hang around for three hours while I get my blood sunburned.

My childhood friend from Atlantic Beach, Mike Kass, was the only one who responded. A new social worker said she didn't understand why I was hesitant to ask people for rides. I said because people are busy and it takes up a whole day and they have other things to to. I think it is probably like this for anyone who has been seriously ill: You are lucky to have friends to help you in the serious stage, and you have to understand that they are less likely to do it in the maintenance stage.

I think Mike would have driven me. But it's a long way from California.