Friday, October 28, 2016

Of not being born yesterday and a string of nightmares

In the department of...

1. Not being born yesterday. The driver Wednesday was Facetiming with his girlfriend while taking me to Boston. I asked him to stop and he said he was just looking at directions. While we were in the middle of the Mass Pike and I saw a woman's face. Whose lips were moving. Maybe she was giving him directions.

My nurse at the Kraft Blood Family Blood Donor Center said I should report him. But I wouldn't do it because he seemed to at least be a normal human being and it was his only job.

2. Learning something new. I couldn't think of the word for the uncomfortable feeling I have on the skin of what used to be my waist. The nice Dr. Savage said he has heard some patients say it feels like a band. I thought it was a sign of backtracking, but then Wednesday I talked to a different doctor who said it is actually a sign that the extracorporeal photopheresis is working on my graft vs. host of the skin: It has broken down the top layer of skin, and the "band" is the part underneath. He said some patients get a hernia but that doesn't seem to have happened to me. So far.

3. Reminding you what that is. A nurse puts a big needle in my arm and I lie as still as can be for three hours while my blood cycles through a machine that separates white cells, subjects them to a photosynthesizing agent, and gives them a zap of UVA light. This is a good explanation that I haven't used before. New machines have made it a little faster. The nurses remain kind and funny.

4. Dreams that reveal the trauma just beneath the surface.

(a) I dreamt that I was wrong in believing that after losing 12 teeth I was finished with the teeth-pulling. My dentist said no, that was the beginning, I would need an iron plate put in my mouth or the rest would fall out.

(b) I picked at one of the spots on my hand and the whole top layer of skin came off. I tried to put it back on but it stayed like a flap.

(c) I chugged a bottle of delicious juice and after I was done was afraid it was grapefruit juice. (Grapefruit interacts with some of my meds.)

(d) My car kept stalling while I was driving it into a garage. I was afraid I was going to hold up all the cars behind me. I finally got it to go and went straight down to a repair area. I guess this is the most positive of all because I called the repairmen to get it fixed so I could get on the road again.

All of this vanishes when I am at the Holyoke Canoe Club. I wish I could take a piece of the court and ride it around like a magic carpet. I love how we are so crazy. On Wednesday we played outside wearing coats and jackets. Our coach, George, is the tall guy next to me. Char, the doctor making a funny face at the other end, calls him King George. We have been a much bigger group. These are the diehards who will play until the snow falls.

Wednesday, October 26, 2016

A week's worth of wanderings

Sometimes I write a few posts in a week and then I forget and realized I haven't done any. I was going to put an exclamation point but recently I read a quote attributed to Mark Twain about why NOT to use this punctuation: "An exclamation point is like laughing at your own joke." I don't usually use it anyway though I do allow myself maybe one per email or blog post, but from here on in, maybe no more.

Last Wednesday: Still playing tennis outside. Backhand slice really working. Ran for two in a row and got both ! (Oops one snuck in.) George asked how did I do it and I said I had a good teacher. We always like to make him smile.

Had the time to stay longer because ECP , the light therapy for my blood, now every three weeks, but was still a little sore from my fall so decided not to push it. Needed to take a nap afterwards so as to have the energy for the debate watch party hosted by New England Public Radio at New City Brewery.  With the Holyoke Hummus Company truck serving food, several big screen TVs, beer, and like-minded people, it was much better than watching it alone.

Friday: I drove to an early morning appointment in Boston to have a bothersome spot looked at. It's been there for months – an irritated circle on my ankle – and nobody seemed to know what it was. Taking it upon myself to diagnose with that foolproof tool, searching the internet, I decided it must be ringworm. 

After this occurred to me right before bed, I looked it up and found a lot of disgusting photos and learned that it is a fungal infection. I emailed Melissa that I had a self-diagnosis of the mystery spot. She forwarded it to one of my dermatologists, Dr. Lin, who said it was not a fungus and told me to have it re-checked. I ended up with my fifth dermatologist in the practice. She cleaned it up and gave me a prescription antibiotic ointment and said she could biopsy it for a possible "squam" (shorthand for squamous cell) or we could wait to see if it healed. Since I was then heading to Connecticut for a weekend with friends and knew we would be walking, I skipped the biopsy and made an appointment for three weeks from then.

I cleverly left Boston early enough to get through rush hour traffic. But I not so cleverly forgot about Hartford traffic. It started raining, which made it even worse. I arrived in New Milford in the dark, having spent more than four hours in the car and listened to a variation of the same NPR stories multiple times. A glass of wine never tasted so good when I got to the Candlewood Lake house where we've been going on and off since high school.

It was great to see my high school friends for the weekend. It rained for a good part of the time, but that didn't matter. We always have fun together, and we did most of what we would have done anyway. (Walking, talking, shopping, eating...)

Two of those friends have fitbits. I don't think I need one because I'm hyper enough anyway. I was surprised to learn, though, that my iPhone has been keeping track of me. I saw that on one of those days I did more than 11,000 steps, for four-plus miles. The walk in the rain was nice in its own way, but when the sun came out and we walked off our regular path it was especially beautiful. And interesting as well because of some of the things we discovered, such as this tree with branches turned into hangers. 

When it was all over and I got back home, I have to admit I was in a bit of a funk. The house was empty and I missed my kids. I sold Joe's old furniture and started to cry. I realized some of it came from being tired, and also from the natural letdown that happens when you've completed something you were looking forward to. Yesterday I started to perk up. 

Monday, October 17, 2016

Losing my hair again (in a dream)

I dreamt I had a tumor on my neck and would have to have my whole head shaved.

I didn't understand because the tumor wasn't near my hair. Someone said it would get in the way. Told me I had a nice head and shouldn't worry. I said it took me a long time to grow this hair back.

A nurse followed me around and said she was ready to take me. I said I had to say goodbye to my children first.

I went to work and cleaned off my desk. I scooped up bags of pretzels and old fruit. Some of the bananas looked OK so I thought I could leave them. But I threw them away. Scattered dollar bills. Cleaned it all up.

Found the ladies' room. A lot of women in there. One on a couch. I said at work I used to go out back and fall asleep for 15 minutes on a brown couch. No matter how many people were talking.

Someone asked did I have the printout that showed how much the newspaper was giving us in a distribution from our retirement fund. I said it was shoved in a desk somewhere and I hadn't even looked at it. I told Joe I thought he had taken it into the house but he couldn't remember. I found it in a drawer in my house.

I was getting $30,000 (ha)! The company wasn't happy about the way that turned out.

Joe was getting $30,000 too.

He was a little kid and wasn't keeping his clothes clean. A white sweater with a smudge. A suitcase full of dirty clothes.

I asked my mother what to do. Said I couldn't always do things for him.

I decided to wash some clothes and take the others to the dry cleaners. I would have him pay the dry-cleaning bill.

My mother thought it was a good compromise.

Sunday, October 16, 2016

Falling flat on my face, getting back up

With Connie Britton at Hillary Clinton Keene office
If you do a good thing for yourself followed by something that is not so good, do they cancel each other out?

Of since the bad is second, does that take precedence?

Or what if you finish with a good? Then you might end up ahead.

OK, so...During last Sunday's second presidential debate, I almost immediately texted to my friends, regarding Donald Trump's lurking behind Hillary Clinton, "OMG, he's going to hit her." I half-joked that I would take half an Ativan but it had gotten too late and I knew I might be sleepy the next day.

The next evening, Monday, I wasn't that up to it, but I went to yoga. When I got back I was still anxious about several things, and, if you can have a fond memory of being in the hospital, I had one about my late nurse friend Vytas coming into my room and giving me a whole milligram straight into my catheter. He would stand beside me for a few minutes, with that little smile of his, and watch me thankfully drift away. I thought what the heck and popped the whole thing. I don't use it very much, which of course is good , but it therefore has a greater effect on me than when I was taking it more frequently.

I didn't think much of it. When it was time for me to take Maddie out before bed, I did my usual thing, turning on two lights. Sort of my usual thing because I usually also take the flashlight. When we went out I called to her, "Come on Maddie, do your business." And looking out at her and not at the step, I missed it and crashed down face first onto the walkway. Glasses flying, I landed on my nose. My knee and chest also took a hit. She sat there. I lay there. My nose bled.

Getting myself up, I went into the house and called my good friend Claudia. I don't remember the time, but it was after 10. Luckily she was with Katie's friend Kristen, a newly minted physician's assistant, and they came over together to look me over. Seeing nothing major, they packed me in ice and put me to bed.

Over the next few days I was increasingly sore. My nose turned black and blue enough so that I thought it might be broken. On Friday I had an X-ray and since I didn't get a call, I assume that it is fine. The first few nights it was so swollen that I had trouble breathing. I took some ibuprofen for a few days after getting permission from Melissa. (Good for reducing swelling and pain, bad for kidneys.)

Mostly I was embarrassed and annoyed with myself and generally putting myself down. I was also upset that I missed one of the last weeks of Wednesday tennis.

But, feeling between 75 to 80 percent today (thinking of my father who liked to talk about his health in percentages), I went on my second canvassing trip to Keene, NH. I actually went to Marlborough, NH, but we left from the Keene office. The shift didn't start until noon, but we got there to see Connie Britton, who is campaigning in New Hampshire for Hillary Clinton, Maggie Hassan and the other Democrats.

I loved Friday Night Lights and was thrilled to see her. "You guys are democracy in action," she said to the assembled volunteers, mostly all of us on this shift from Massachusetts, before leading us in the ultimate Coach Taylor pep talk, "Clear eyes, full hearts, can't lose."

This week marks the beginning of the GOTV (Get Out the Vote) part of the campaign, and it is interesting to see how they start this effort that was such a successful part of the Obama campaign. I went with two other people to houses identified as having either Democratic or unaffiliated voters, asked if the Dems were all set or if they needed any information, and had some interested conversations with the ones who said they had not yet decided.

Then it was back to the office, where, same as last week, they had some yummy food. The reporter in me still appreciates free food, and the canvasser in me was hungry.

Sunday, October 9, 2016

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.

Thursday, October 6, 2016

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."


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 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.

Monday, October 3, 2016

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.

Saturday, October 1, 2016

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.