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.

Monday, June 13, 2016

(Hamilton) Tony Awards, pantry moths and trip to New York

It's hard enough to get to sleep after one show, let alone the performances of all the nominated shows on last night's Tony Awards, followed by a deep dive into Hamilton-land, watching the Ham for Ham performances held before some shows, and then the three actors who played the king miscast as the Schuyler Sisters, and so on and so forth.

On top of which Katie was here for a Tony Awards dinner of brownies and ice cream, and Connie was here too to add to the fun.

This drowned out the noise in my head created by my ongoing battle with pantry moths, but at least after our tennis match yesterday I found out that I am not alone in being enraged by these little matchstick-like pests. When I said that I was going home to take care of my weeds and my pantry moths, two other players chimed in that they had the same problem. We then had a pantry-moth-itis support group because they too said it was making them hate their homes.

I got some Dr. Earth Pure and Natural Pest Control Killer Spray from Home Depot and am enjoying streaming it onto them and watching them fall. I looked it up and found that many sufferers recommended Diatomaceous Earth, a powder which I ordered from Amazon. I sprinkled it around in my now empty pantry and then thought afterwards maybe I should have had someone else do it and worried that I had inhaled something that could trigger a chain reaction of horribleness. A friend of Ben's who lives across the street had said that he would do it but he seemed busy so I went ahead but since it has now created anxiety I have to remember to not do that kind of thing again.

But on to the next thing:

Drive to New York with Katie, stay at an Airbnb 10 blocks from 1200 Fifth Ave., my old homestead, probably check in there with old friends who still live there, then Shakespeare in the Park and "Waitress" for the second time and some other stuff.

I don't have to worry about crazy drivers because we are driving ourselves. We were going to park in Stamford and take the train but then I got the idea of googling parking near 115th Street and Fifth Avenue and came up with ParkWhiz, through which you order a spot and get a pass for $17 a day, meaning I'm going to pay $51 for three days in New York.

Katie said Grandpa might not be too happy because it is a sign of wimpiness to park in a garage instead of on the street but I said I think he is watching from Heaven and thinking since I can't ask the doorman to feed the meter anymore it is a pretty good deal and I should take it. I read the reviews and they were all favorable. It will be cheaper than parking and taking the train and also we won't have to drag out stuff from the train station.

On to the next challenge: packing.

Wednesday, June 8, 2016

Mother knew best about Hillary Clinton and more

My mother wore a Hillary hat.

This was a long time ago.

One day, also a long time ago, I passed Hillary on the street in New York — it might have been Madison Avenue, but I'm not sure — and she said, "Hi, how are you?"

Frankly, I wasn't as sure about Hillary Clinton as I am now, but my mother always loved Hillary. I can see her like it was yesterday walking into our New York apartment in that hat.

She was also certain about a lot of other things that came true.

For example, I wasn't going to watch the 2004 Democratic National Convention, but my mother said I should because the young state senator from Illinois, Barack Obama, would be president some day. I went ahead and watched it.

When I used to drive along dark Route 2 more than an hour and a half  from my home in South Hadley, Mass., to review plays at the Williamstown Theatre Festival, she said to get a new thing called a car phone. I said, "Who uses a phone in the car?" But I relented and got this boxy thing that ran on the car's battery.

She also said to get a suitcase with wheels. I said, "Who does that?" Now, of course, everyone does.

She died in 2006 and missed all of the excitement that is happening now.

But as I was texting with my high school friends from Friends Seminary last night while we watched Hillary Clinton's historic victory speech,  we all said that our mothers were watching together in Heaven. Possibly in the section for the New York mothers who knew best.

Sunday, June 5, 2016

On National Cancer Survivor's day, thinking of lives saved, friends lost

I didn't know it was National Cancer Survivor's Day until Barbara Shaw Sadowsky – a marathon survivor at 39 years – posted it on Facebook.

It's funny because I had just gone up to Spofford, N.H., yesterday to take a walk in the woods with a cousin (and Maddie) and the topic came up, as it often does, about my own marathon fight against leukemia. It was in reference to the changes in my hair that I wrote about in my essay. I told her I thought I looked funny in the French poodle hairdo. She said I had looked great and very alive.

When we were going over the timeline and I got to the point where I said my doctors said a certain great thing about me at the five-year-mark, I had to spell the word instead of saying it, C-U-R-E-D.

She said I sounded just like my mother when she spelled words out instead of saying them, just like me, out of fear of being jinxed.

There are so many times when I have felt like I needed to tread lightly. For example, when I twice hit the two-year-mark when my doctor said I could break out the Champagne, I marked the occasion quietly, having coffee with friends, so as not to send out a signal that I had too much hubris and deserved to be struck down.

At five years, my children took me out to dinner with a number five candle and a chorus of Happy Birthday, but we still didn't say the word. I can say, "They say I'm cured," but I can't say it myself.

My social worker said patients have all sorts of superstitions. One woman had had a good blood test when wearing the same pair of earrings and didn't want to risk changing them the next time.

This way of magical thinking actually sends feel-good signals to the brain, but if taken to extremes can turn problematical. I don't go crazy over it. I just won't say THAT word.

The road is filled with joy, but once you have entered what some called Cancerland it also contains landmines. People who you wouldn't have met if not for cancer die. Your eye catches the cause of death of a person just about your age and it is from "your" disease and it reawakens the shock of fear that you had when diagnosed It doesn't make sense, but there it is.

But let's dwell on the positive.

All the Dana-Farber doctors, nurses and staff, the friends and family who form our "caring circle," the advances in medicine which make it possible for some of us to survive when in the not-to-distant past we would not have,  the helping organizations such as Cancer Connection and individuals such as Dr. Jay Burton, also an AML survivor and the founder of Survivor Journeys, which addressed the lack of support groups locally for survivors of blood cancers, and, of course, the donors and Be The Match, without which we blood cancer survivors would not even spelling out THAT word.

Friday, June 3, 2016

Scheduling screwup and Chewbacca Mom

I really messed up with rescheduling my light therapy treatments, which I think will be my new shorthand for ECP.

After learning that they had extended the time between treatments too quickly, I booked my next ride for two weeks, instead of three, from my last appointment, meaning May 25.

But when I called as usual on my way in, they said I did not have an appointment. Luckily they took me anyway because I was almost there. And I needed it done. It is interesting how fast you can backtrack. My thighs had returned to the very attractive bubble-wrap dimpled look that I had noticed at the beginning of this about a year ago, my stomach looked and felt like it was harboring a small medicine ball, and my hands puffed up. The new schedule was apparently starting this week, so I kept that appointment because Ellen thought I could use two weeks in a row.

Nurse trying on watches
It had been emailed to me, but it was one of those cases where I saw what I thought it should be instead of what it actually said.

When calling MART to plan the rides for the new schedule, I made them according to the schedule that I thought I was on and forgot to correct it. This past Wednesday I had everything ready to go but in the morning realized I had not gotten the confirmation call the night before. When I called and actually got through (a minor miracle) they said I hadn't asked for a ride. So this week they were expecting me but I didn't go.

To summarize: Last week, ride but no appointment. This week, appointment but no ride. I am going to go for the next two weeks. I will need to call back and hopefully get through before my next birthday so that I can plan an extra ride.

It all worked out, though.

Chewbacca Mom
Everyone was in high spirits at the Kraft Family Blood Donor Center last week. A couple of nurses were laughing hysterically at the bed of the woman next to me. She was also laughing. I heard wild shrieking coming from inside a phone.

 My nurse brought the phone over and showed it to me. It was the now viral Chewbacca Mom laughing uncontrollably from the inside of a Chewbacca toy mask. You would not believe how many gifts she has received since then.

A while back at a picnic, some of us laid-off newspaper people were trying to think of some ways we could make money. Too bad we didn't think of something like that.

As previously mentioned, the nurses all love my Bev Bloomberg watch, leading to a domino effect of one after the other buying them. Last week one of the nurses couldn't decide, so she walked around asking for advice.

One laugh in which I did not share was when the needle went in easily but when the moment of truth came at which it needs to draw, nothing happened. Debbie, who was my nurse, called Esther over to investigate whether something was wrong with the machine. In the past when this has happened, the nurse has had to jiggle the needle around (not fun) or remove it to get a better connection with the vein.

Then she realized that for the second time that day, she had not opened up the clamp.

"It's clampie day!" she said, laughing like the Chewbacca Mom.

It wasn't the end of the world, but I didn't think it was as funny as she did.