Sunday, July 24, 2016

Adventures in dreamland and in reality

Some adventures:

Exercising: The other day Maddie and I inadvertently went for a run when we ran into our runner friend Ellen and a friend of hers who had hiked the whole Appalachian Trail. We joined up with them while they finished their walk, but I didn't want to hold them up (as some people know I've gotten kinda slow) so for every one step they took, I jogged a few to keep up...sort of how I walk with Ben.

We ended up at Ellen and Mike's house, where luckily I got a glass of water and a ride back.

Looking out Ozawa Hall
Music: I went with Ken Ross to the opening of the Festival of Contemporary Music at Tanglewood. I couldn't make much sense of it but after reading Ken's review I understood it better. He was kind enough to put up with me whispering, "Are we going to get some melody next?" He smiled and shook his head no. Despite the mosquitos, it was fun to go and sit in the beautiful Ozawa Hall and look inside and out. Always great to do things with friends from the newspaper biz because you never run out of things to talk about.

Inside Ozawa Hall
Speaking of the newspaper business: I walked into Thornes Marketplace in Northampton the other day and bumped into an old friend from the Transcript-Telegram, Diana Carter, who had bumped into another friend from the T-T, Barry Werth, and his wife, Kathy Goos. I walked over and said, "Is this a T-T reunion?" Barry said that at any minute, Greg Pearson might walk in.

We fell right into an easy conversation as though no time had passed. By the way, when I say "old" in these instances, I mean old as in length of friendship and not as in years!

Dreamland meets reality: I dreamt that I was walking down a street and saw Patty Rosenfield, a friend from Atlantic Beach, and gave her a big hug. Then we saw her brother Tommy walking down the street and called him over for a group hug. The next day I learned that their father had died.

Recurring dream: I dreamt that my mother told me she was going on a long trip to faraway countries and wouldn't be able to call me. I told her I was really upset and actually angry because I needed to hear from her. She said I had grown too attached to her, like she had done with her own mother, and she wanted to help me get some distance. I said it was too late for that and woke up feeling sad.

Feeling pathetic, taking action: Yesterday I had that bereft feeling of wondering where everyone went. Parents departed from the earth, children departed from the area. I called Carolyn and said hello from a person who was feeling lonely and wondering if anything was going on. She said come on down for hotdogs. So I picked up some corn and tomatoes, put Maddie in the car and went on down to Springfield for a cookout with good friends and good conversation for me and two dogs for Maddie: the famous Theo and an adorable golden doodle puppy who Carolyn and Chip are babysitting.

Maddie enjoyed playing tug-of-war with the puppy and even let him climb all over her. They put him in the crate and she went over to see where her little friend had gone. I enjoyed talking to like-minded friends and went back home no longer feeling sad.

Tuesday, July 19, 2016

An almost week, in days

Almost a week and and more running in circles than running around:

Last Wednesday was a good day for George's clinic because I didn't have to go to Boston for the light therapy so I could stay longer. After the nearly three hours of fun, some of us diehards stayed for a game of triples.

Thursday was off to a good start with yoga followed by a visit to the Northampton Farmers' Market and sitting on a step, eating blueberries and talking to a friend from the newspaper. Then pedicure so my toes would look decent for my trip to Jacob's Pillow with Ken Ross, who would be reviewing Hubbard Street Dance Chicago for

The pedicurist wouldn't do my left big toe because I had nicked the skin when I hastily cut my toenails without taking the polish off. (Lazy!) She said I should go to go to the doctor because I probably had an infection. So I covered it in a minion bandaid (might as well be cute) and got an appointment the next day.

When riding in the car with Ken, I heard the ding ding ding of texts coming in. I didn't want to be rude and look but finally did and saw that it was some of my high school friends talking to our friend Nancy, who had been in Nice and who was in nearby Cagnes sur Mer and heard what she thought was fireworks and of course  had to do with the truck attack in Nice.

Luckily Nancy was safe, but having a friend so close (who maybe even would have been there) underlined the horror.

Jacob's Pillow
My friends said they would have a drink, and although I don't like to drink before a show, I had the Pillow's special drink when Ken and I had a quick pre-show dinner. I tried to concentrate on the beauty around me.

The show was very dark. Here is Ken's review.

The next day my doctor said he would not give most people an antibiotic,  but he gave me one because I was so "special." He also told me to soak. The news of the day was so full of doom and gloom that I vowed not to watch my usual Friday night news programs. But when we went out for ice cream, a friend told me that a coup was being attempted in Turkey.

It seems like only yesterday that I was a travel agent handing out brochures about things to do in Turkey at our travel fair in Mr. Saltzman's 6th grade class at P.S. 198. My friend and I ate our ice cream while watching the coup. It was surreal and scary. I could not believe I was staying up late watching this happen but I couldn't take my eyes away.

Saturday, super hard yoga class, super hot day, dog walk and nap.

Sunday, semi-private lesson with George. Really great. Then I came home and got down in the dumps because I wanted the sequence of events to be what it was in Atlantic Beach: tennis, shower, then tuna fish sandwiches made by my mother and served on a beautifully decorated tray in the backyard. "Where did everyone go?," I wondered and got tears in my eyes.

Just then, Katie called. The saying is that the child is father to the man, but don't forget about the child being mother to the woman. She said she knew how I felt and recommended getting out of the house. Just then a friend called so we went for a walk. Then I realized that it was the night for the Ko Festival Story Slam, and thought that would be a great way to get over myself as well as a good time to say hi to my friends Dan Green and his wife, Sabrina Hamilton, Ko Fest's artistic director.

The true stories, told a la The Moth, represented a range of experience, from funny to sad, pointed to poignant. I could not believe that one woman up there was telling my story. It was about a mother's difficult (is wrenching too strong a word?) last days with her daughter before her daughter heads to college, and the last minutes in the dorm when you linger, and then the moment when you say goodbye and realize what a wonderful young woman your child has become.

Trying out Hoka One One
Afterwards I searched the storyteller out and told her how much I loved her story and how much I related to it. She was talking to another woman who was saying the same thing. This kind event is so great because even if you can't directly relate to an experience, you can relate to the storytellers.

Much better and more uplifting than watching an attempted coup in Turkey.

Yesterday before a tennis match (so-so) Jim Bloom took a photo of me in the sneakers that I wrote about in my story for Sneak preview: they are supposed to help runners who suffer from osteoarthritis in the big toe, or hallux limitus, which is threatening my running more than all the serious things did.

Now I'm trying to limit my exposure to The Republican convention. But it ain't easy.

Tuesday, July 12, 2016

The really really weird dream show

Sometimes my dreams are more interesting than my life.

Last night I dreamt that while I was still at the newspaper, a friend who is president of a large corporation offered me a job. I would get paid more and work in a much nicer place. For some reason I knew that my newspaper days would end in the near future but I wasn't sure I was ready to go.

I asked what I would be doing and she said that I would be working with people who were recording oral histories. My job was to make sure the recordings had a good ending.

I said I would be good at that because I knew this from my news writing: "Use the best thing first and save the second best for the end."

But then I wouldn't be writing. I would miss that too much.

And I said that I would be more comfortable at the grungy newspaper with the dirt falling onto our desks from the ceiling vents. (This really happened. Every day we would have to come in and wipe the desk calendar off.)

So I went into the office and went to my desk (which in some of my work nightmares has disappeared along with my computer terminal or my lamp and which in some cases is occupied by somebody else) and saw the spookiest thing: The calendar that covered my whole desk, and on which I had scribbled dates and reminders, was still on April.

April was the last month I worked in 2003 before going to Dana-Farber for cancer treatment. I wrote it in my little book. April 4, 2003, last day of work.

I thought I should change it but I didn't do it.

A moment frozen in time.

The night before I had a nightmare that is part of a series about things that have happened to me.

This time it was my skin.

I went to the dermatologist to have her check out a scaly spot on my ankle. (A spot which is actually there but which I'm not supposed to be worried about.)

She said it looked horrible and started slashing at it with a knife. She cut up so much of my skin that I had to wear a cast on that leg. Then I went out with some people to go somewhere and encountered a swamp full of muck. I had no choice but to get the leg thing dirty while we waded through the muck. I was nervous about messing up my skin but we got to dry land and it seemed to be OK.

Sunday, July 10, 2016

The trouble with (some) words

Newton haircut
While taking a little break from blogging (laying low) I did some of these things in a discombobulated way, not in order of occurrence: went to spinning straight from Boston in my street clothes, went to yoga in my tennis clothes, took a fabulous 20-mile bike ride on the Allegheny Rail Trail (part of long weekend in Pittsburgh and Hidden Valley, great friends, great food), naively/insensitively posted on Facebook and tweeted about a complaint I had with a company when I should have sent an email, got slammed, insults flying at me that you would never say to someone's face (fuckwaste of a human being, seriously?), did the wrong things (over engaged, overreacted) when, according to this timely post How to Deal With Twitter Drama, I maybe could have engaged for a little while but then should have walked away as the stress level climbed and I even cried; then, following advice of a son who said to think about why I'm tweeting (to promote myself as a writer and comment on the things that interest me, also, cute dog stuff allowed) — and who suggested going back and deleting all the threads of the conversation — went back and cleaned the slate, took a break, and restarted and rebalanced by sending positive vibes to the universe, complimenting other writers or liking and retweeting good advice and thoughts and Democratic points of view.

Since that might have been the longest sentence I ever wrote, time to start another. Gave the pep talk to another Dana-Farber patient who relapsed after bone marrow transplant (connection through the One-to-One program in which those of us who've been there help out those going through it), and she said she felt a lot better.  I said, as I said to previous patients, that I don't know if I should tell her every crazy thing that happened to me because I don't want her to get it in her mind that the same could happen to her, but that I would tell her if she wanted to know, to point out that I'm fine, going on eight years, and she said yes, please tell, because she needed to hear about a good outcome despite twists and turns. I told her what my nurse Vytas (who I miss so much), always said when he sat on my bed and called me Nervous Nellie: "They'll figure it out."

I sent some reading material, including Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML), in which my Dana-Farber caregivers explain the whole thing from its start in 2003. She asked if she could call and I said of course.

Interspersed with all of this, I managed to go to ECP, get a Newton haircut, go out to dinner with friends and see a great play at The New Century Theater in Northampton, play tennis at the Canoe Club before it rained, walk the dog, and watch Wimbledon, including the tremendous women's final.

Some other thoughts on parsing sentences and phrases: As previously noted, my skin condition backtracked after I extended the time between ECP sessions to three weeks instead of two. I quickly returned to two, but my skin has not bounced back to where it was. I showed Ellen, the PA, how the skin on my abdomen had hardened again (a result of the graft vs. host disease of the skin)  and she said she thought it might be something internal because my skin is OK.

"It's nothing to worry about...for now," she said.

"For now?" I asked. "What does that mean?"

She said it's just something they say.

I repeated this to the two nurses taking care of me and asked, "Does she think I have ovarian cancer?"
They both said to forget about it, it is common for your skin to take a while to soften up after backsliding. One of them said that the PA's modifier was like saying, "Your house is not going to burn down...for now," "That bus is not going to hit you for now," and, adding some more to make me laugh, concluded it was just a case of CYA (Cover Your Ass). Hello healthcare providers: This is not helpful.

Then there were the words the hairdresser told me upon parting, when upon the recommendation of a friend, I got a Newton haircut. I asked what he was going to do, and he said, "Give you the best haircut you ever had." It was a great haircut (twice the price of Western Mass, though), but he said a kind of odd thing, telling me that from looking at me he knew every bone in my body, which is why he can give a good haircut, and at the end of our visit saying, "I sense a lot of fear."


These things are the reason that when driving home Thursday and realizing I didn't have time to go home and change for spinning, I went straight to the Y in my street clothes. Luckily I had my biking shoes in the car.

It was so humid that the fitness class was canceled, but while sweating like crazy, I felt my brain calm down.

At night, another strange thing happened.

I heard a crash in the hall outside my room, but, half asleep,  I didn't get up to investigate. I thought maybe a robber was out there and wished Maddie was a barker. Then I decided it was just a house sound and drifted back to sleep.

In the morning, on the wall where an antique mirror in a wood frame used to be, there was only a piece of wood hanging from a wire. I looked all over and couldn't find the mirror. OK, I thought, so someone had come in and stolen the mirror. Then I saw it face down on the other side of the room. As I went to get it, I said, please don't let the mirror be broken, because then I would have worried that I was going to have seven years of bad luck.

Thankfully it was all in one piece so I had one less strange thing to worry about.

Thursday, June 30, 2016

Thin skinned, literally and figuratively

I suspect I overreacted to something that a new participant said at our Wednesday clinic with George at the Holyoke Canoe Club.

When we were doing a drill where you slice the ball back and forth so that it stays inside the service box, she kept giving it the kind of slice more befitting a lob, sending it over my head. I let them go and by about the fourth time I said we're supposed to be keeping them in the box. Then she did it again. I said I can't jump for those and she stopped and asked, "Why?"

It would have been at the very least puzzling to the other people at our level in a fun clinic like that, and the next step up would be annoying. I reacted a step beyond that, getting defensive and mumbling to the person next to me hitting with a different person, "She should try having ......." Well you can fill in the rest.

He said I was doing great and to let it go, which I did, as soon as I looked at the sun sparkling on the river and switched to another hitting partner.

It obviously didn't fall unto the "stupid things people say to you when you have or have had cancer" category because she didn't know anything about me; rather it was just plain old "silly things people say" that don't deserve attention. But sometimes I go there without even realizing it.

I actually am running around well and had a good 6-3, 6-3 win my doubles partner Monday at Crosier Park in our Paper Dolls summer league game. We also won 4-0 when we played "for fun" after the match was over. (A team sweep!)

Since I'm getting a little tired of covering up with long sleeves plus pants under my skirt plus my sun-protection gloves, yesterday I took a break and wore a tank top instead of the long sleeves and ditched the long stretchy pants.

Afterwards I met some of the players for lunch at the Bueno Y Sano food truck in Holyoke. There was no shade, and so we sat at a picnic table under the hot midday sun. I didn't have anything long-sleeved with me, so I grabbed a striped beach towel still in the car from our Wellfleet trip. I'm sure I looked odd looking like that on Race Street where there was no beach, but nobody looked at me.

The light therapy makes my skin supersensitive, and my arms got sunburned.Today I was back in my long sleeves, hot but protected. It's a good thing I didn't go to Dana-Farber today because Ellen (the PA) would have something to say about it. She wants me to play indoors, but since everyone is outside and tennis is part of my self-prescribed health-care protocol, I'm just going to keep covering up, lathering on the sunscreen, and playing.

Sunday, June 26, 2016

Coming in for a landing

Blowing in the wind, Wellfleet
Dissonance: One day running around New York and seeing two shows, another on the beach with my hair blowing in the wind, and then back in the chair with a needle in my arm.

This all happened in a short period of time. The Cape Cod mini vacation ended Wednesday morning, when Katie and I drove to Logan Airport for her flight back to Minneapolis and I went straight to Dana-Farber for the light therapy treating my graft vs. host disease of the skin. But it was wonderful and restorative so I can't complain. Well, maybe a little because it was so short and when the planning and the thing itself is over, the inevitable letdown occurs. Think, First World Problem-itis.

I got to Dana-Farber early enough to go up to my old hang-out, 6A, one of the bone marrow transplant units at Brigham and Women's Hospital. Two of my favorite nurses were there. We gave each other big hugs. One got tears in her eyes when I showed her the photos of me and Nell. The aide who bathed me when I could barely move came over and talked to me about how sick I was. My tough-love nurse, Myra, wasn't there, and I said to send her my regards. We talked about how she had made me sit in my chair when all I wanted to do was get back to bed, and she had said, "You'll sit up and eat your lunch like a normal person." We talked about how when I relapsed the second time, I went straight to the sixth floor and asked Myra how I could go through it again, and she said, "You can have your pity party for an hour and then you'll put your boxing gloves on."

Race Point sunset
I also dropped in on a patient who had just had her bone marrow transplant. I am happy to be getting more patients to talk to through the One-to-One program in which patients who've been there talk to those going through it.

I'm more useful for people who are having a hard time or who have relapsed, and I guess that's not what patients were looking for. But recently I got three.

 If they ask directly for my story, I tell it to them, but if they don't, I gloss it over by saying a lot of stuff happened to me including relapse but Dana-Farber figured it out. I don't like to get into too many specifics because I understand the tendency for someone to think it might happen to them. On the positive side, of course, I'm alive and well so that is what I focus on.

I gave two tips to the patient the other day: During your year of dietary prohibitions, you can still eat fruit by cooking it up with lemon and cinnamon; technically called fruit compote but named fruit mush by my mother and me. I also told her that if she wanted eyebrows, she could order stencils on line.

I was pretty tired by the time I got to the Kraft Family Blood Donor Center, and I fell asleep almost as soon as the needle went in. A problem with going on vacation with my kids is that I always want to do one more thing on the day that we're leaving, while they consider it packing up day only.
So I got up super early Wednesday and did my one more thing, going to the Flying Fish for coffee and a muffin and then walking over Uncle Tim's Bridge and looking at the water.

When I woke up from my nap, on Wednesday, my nurse told me I was almost done. It was only 5 p.m. and not the usual 6:30, so I asked if she had done five cycles instead of the usual six. No, she said, it was the faster new machine. Some people are doing it even faster by getting a needle in each arm, but I couldn't tolerate it because my veins have been used so much that I need to alternate and rest one arm.

I didn't have to deal with any crazy drivers because the crazy driver was me. I didn't want to do any more driving in the same day so I stayed over at Margaret and Nick's for a nice dinner and got a fresh start the next day.

Saturday, June 18, 2016

Whether you say on line or in line, it's always fun

In the (luckily) distant past, blog silence meant something bad, but now it is likely to mean I'm running around, which is the case since I last wrote.

After I picked Katie up at Logan Airport last Saturday, we had a day at home and then went to "the old country" for her birthday celebration a month early because she is in between jobs. Monday was travel day, Tuesday Shakespeare in the Park, and Wednesday, dinner with (cousins) Jeanne and Amanda and "Waitress" the second time around because we had both seen it in Boston.

The least expensive and most decent looking Airbnb that I could find happened to be at 115th street and Fifth Avenue, just a little north of my old homestead. I've passed by the apartment where I grew up but lost touch with our friends in the building and found myself tearing up when we talked to the doorman at 1200 Fifth and looked at the cement in which our cousin had written LG (for Lynne Gordon) in the wet cement when the new building owners were wreaking havoc during the last days of her life in 2006.

Before I went down I had called our friend, now 99, and asked her how our other friend, the fascinating Martha Coigney, was doing, and was upset to hear that she had died a few months earlier . My mother had called her Martha-Who-Has-A-Tony because she had indeed won one for her work with the International Theater Institute. We had stayed with both of them in their fabulous apartments overlooking Central Park but had lost touch over the years. I felt horrible but it's just too hard to keep up with everyone.

I cheered up with a trip to Little Italy via subway for dinner, a stroll, a gelato and cannoli.

The next day, we got up at what my father used to like to call the crack of dawn to wait on the Shakespeare line, one of our favorite things to do. (I still hang on to my New Yorkism – on line – instead of the proper "in line" so I thought I would throw it in there.)

In the Shakespeare Line
We made friends with the people around us and talked the whole way through, hardly even opening our books. Then, it was good that we had taken the traditional photo of us holding our tickets, because at some point during the day, one of the tickets wandered off. The show, an all-female "Taming of the Shrew," was sold out, a not totally appropriate way of saying it because the tickets are free, but in any case, there were no more tickets to be had.

The person at the Delacorte Theatre box office said our only choice was to go early to the standby line unless we could zoom in on the tickets in the photo and show proof that we knew the number of the missing seat. My investment in my iPhone 6 with the good camera paid off because we could indeed see the number, and the night was saved.

It was interesting to see Cush Jumbo (Lucca Quinn in the last last season of "The Good Wife,") in the role of Kate. You can read the New York Times review of this problematic play here. We decided that they managed to pull it off through a tongue-in-cheek approach.

I thought I might go for a little run, but we did so much walking that it never happened. We were also going to go see the bench that we had dedicated to our parents near the flower garden that my mother loved. I don't know where the time went but we skipped it in favor of spending more time on the next visit.

Wednesday's performance of "Waitress" was early, at 7:30, so we had dinner early too, at a good Italian place on Restaurant Row.

Over at the Brooks Atkinson Theater, the smell of baking pies wafted through the air, a nice touch with "waitresses" selling the pies in little mason jars. For a sampling of reviews, click here.

The show was sweet, just like the pies, and we drove home listening to Sara Bareilles singing the songs. Back at home, I went up the hill to Breezy Acres and got a pie made with fresh local strawberries.

The mason jar and the whole pie each cost the same amount: $10. But we were paying for atmosphere at the theater, so it was worth it.