Wednesday, August 23, 2017

Do that twenty-three times

Almost birthday party time
I don't know where everyone was for George's clinic at the Canoe Club today. I guess some are injured and some are just busy doing other things...or maybe they were deterred by the overnight rain.

In any case, while sometimes we use up three courts and don't all get a good amount of time with George, today when I got there, just one other person was hitting with George. And he strained his arm, so it ended up being only me.

Because George does repetitions of drills based on date of the month, I had to do everything 23 times.
Getting a little tired after hitting 21 in a row and hitting the 22nd into the net, I said I thought I had hit enough. He re-started at one anyway. "But it's my birthday," I fake-whined. "No it isn't," the drill sergeant said. "It's tomorrow."

We went back to one.

I was doing one-bounce slices at the net, forehand and backhand, and then ground strokes from each side, aiming at cones.

I knocked the ball off the cone on the first forehand and backhand. He said I should play the lottery. I just remembered that I forgot to do it.

Afterwards he said I did a good job and showed a lot of stamina.

I don't have any medical appointments this week, but I'll make up for it next week by probably having three: a neurologist for the first time, ECP (the blood treatment for my graft vs. host disease of the skin) and, possibly Melissa, my nurse practitioner. Without all of that and without my donor, Denise, I wouldn't be having a birthday tomorrow.

Some stem cell transplant recipients call your original birthday your belly button birthday. That sounds silly. I call the extra four my "re-birthdays" and the one on Aug. 24 just my plain old birthday. Old could be the given word here.

After I wrote my Huffington Post piece about my father's death from a brain tumor, I connected with some people who had lost friends and family to a brain tumor or who had one themselves.

One had tweeted to stop complaining about getting old because you're lucky you get to be old.

Gotta keep that in mind.

Sunday, August 20, 2017

Driven to distraction, driving towards NY

Grown-up kids at dinner with mysterious object
Been driving a lot because...

On Wednesday I reserved a ride for the trip to Dana-Farber. I got the confirmation call the night before, and then, the day of, a call from the driver, who asked if I wanted a ride at 2.  I said yes.

So I packed up and looked out my driveway, and when at 4:06 there was no driver, I called the number he had used to call me. But I got no answer and no voicemail. I called over and over until about 4:15 and then finally gave up and called the complaint line at MART, which arranges the rides.

I got put on hold and then told that the driver had left, listing me as a no-show.


I said.

"I've been waiting at my door."

The operator said she would file a complaint for me but in the meantime I was on my own.

It was a company (Prevalent Transportation, one of the contractors) that has taken me a zillion times before, and they know to come in the driveway or I can't see them. This happened once before when a driver waited at the foot of the driveway, didn't see me, and left without calling. If they don't see me, they can call! They usually do. The last time this happened, the operator told me they are not obligated to come into the driveway or to call. I imagine the guy just didn't feel like doing his job.

I called my people in pheresis at the Kraft Family Blood Donor Center at Dana-Farber and asked what was the latest I could get there. They said 4:30. A friend said he would drive me but by the time he got to my house I would never make it. So around 2:30 or a little after I jumped into my car and sped off.

I made it exactly at 4:30. They were impressed. I was wired and upset.

My nurse for the day, Marlene, tried twice to thread the needle into my left arm. Twice, it hit a valve and would not go in. I didn't have the help of my oxycodone because I couldn't take it and drive. It was unpleasant but I did some slow breathing.Tina, another nurse who was there, gave it a try on the other arm and went in successfully. They said it would go faster if I tried a double – not exactly the technical term – meaning one in each arm. This is possible with the new machines. I said I wouldn't mind but I would wait for a time when I had my pain meds in case I had a problem.

I started to take a little nap when the procedure was under way, but a doctor came over to talk, so that was that. Mandy is a nice pathology fellow. I showed her some of my medical writing, such as what it's like to live with two sets of DNA, and my most recent, on how treating neuropathy can be a pain. She said I should go on TV to tell my story of the four bone marrow transplants. I said I didn't know how to do that and wasn't sure if I wanted to anyway.

I finished around 7 and got back home around 9, pretty tired. It wasn't the best timing, because the next day I had planned to pop down to New York to see some friends and family and do some of the usual things such as run in the park.

I did it anyway. I parked in New Haven and took the train to Harlem and then went on to my cousin Jeanne's. As you do when in New York, I walked all over the place. Yesterday I did around 17,000 steps.

Some of us had a nice shabbat dinner on Friday. It was extended family, kids and a baby. Time flew. I was compelled to mention this while looking at my high school friend's children and a grandchild. I thought we were just in her room making lists of the boys we liked.

For dessert, I was surprised with a pre-birthday cake. Sweet! (One Donald Trump sentence structure allowed per blog post.)

Yesterday I ran a little more than four miles to and in the park and up to the reservoir. I considered going all the way around, but I looped back on the bridal path instead.  For someone who really isn't running, I figure that isn't too bad. 

There was so much activity that I thought a race was going on, but one of the runners said it was a training run for the New York Marathon.

After leaving the park, I got a bagel and a coffee and sat on the steps of a church on Lexington Avenue about 10 blocks south of 86th and Lex, where my mother's store used to be. Lexington Avenue feels in many ways the same, but the block where my mother's jewelry store used to be has totally changed. It's one big blob instead of small stores such as my mother's and Reggie the dressmaker's.

I was going to leave after my run but headed over to UN Plaza to visit my 98-year-old aunt again. When leaving New York I tend to dilly-dally even more than I do at home. I knew that I would be tired after picking up my car in New Haven but figured I'd caffeinate and get through it.

On the way to the 125th Street/Harlem train station in an Uber, I looked around and realized that I had left my laptop in Jeanne's apartment. We were already at 106th Street and would have to go back to 72nd. I asked the driver if he could turn around, but, of course, it is not so simple in an Uber. I had to send him a text message with the "new" address (the address from which he had just picked me up ) and an explanatory note and then re-enter the final destination. It's all in the app, so there was no such thing as using old-fashioned words to tell him, I later realized. Also, we had a bit of a language barrier. It was cumbersome and made me wish I was in a cab.

At $32, it was a pretty expensive trip. I don't know if a cab would have been better or worse. 

Having missed my originally chosen train, I got on the next one with a few minutes to spare and promptly fell asleep. Once at the train station in New Haven, I went to Notes on my phone to check my parking space number and saw that I must have not hit SAVE: The field was blank. Another fine kettle of fish...

I told the people on the elevator what had happened, and one man said I could get off at the sixth floor and just walk down. I remembered parking pretty quickly on the first floor, so I asked the elevator people what they thought about my starting at the bottom. "You could have lucked out," a nice woman said.

So I rode up with them and then rode back down, got out, and looked around for A-1 or something like that. I clicked the door unlock on my keys. A faint beeping grew quickly louder. 

Mirabile dictu!

I found the car, got in, and arrived back home around 9 with no more mishaps.

Today I was tired but still glad I went.

Monday, August 14, 2017

Feet (or rather heel) don't fail me now

Tanglewood on a beautiful day 
After fear of relapse and fear of death, the thing I fear most is return of the dreaded heel pain, plantar fasciitis.

It practically crippled me for months that I had it years ago, and it was a pain to get rid of, cured finally by the soft orthotics that I got from physical therapist Ken Holt out in Montague. I complained bitterly (a favorite word of my father's) about it, while not complaining at all about leukemia. So the twinges that I have had lately have set off alarm bells. I do not want to go back to the period when I couldn't even walk down my driveway without piercing pain.

It might have started from walking barefoot more than I used to; a friend doesn't allow shoes in the house, and I walked barefoot until I could find the appropriate footwear to put on in place of the slippers offered. The slippers were almost the same as going barefoot because they were flat, plus, they were ugly! I repurposed a pair of old sandals by cleaning them. Opinion varies on whether going barefoot is good or bad for plantar fasciitis; in my case it is bed because I need the support.

Then I exacerbated it on an otherwise lovely day at Tanglewood with the Boston University Alumni Association and guests last week. (Some people were confused by my FB posting saying I was with the BU group because they thought I went to Vassar. I got my undergrad from Vassar and my master's in journalism from BU.) I have been to Tanglewood many times but never took an official walking tour like I did last week. Learning about the history was interesting on the beautiful day, but I did it in shoes not made for walking. Hence by the end of the day my feet really killed.

It didn't detract from enjoying the music while sitting in the Shed, a totally different experience from sitting on the lawn, on the day of Yo Yo Ma's "Little Carlito" entreaty. Such a pleasure to hear a star speak like a "real" person, even giving the number of the Stockbridge and Lenox police departments should anyone find the conductor's lost dog. If you read this story, you will discover the happy denouement.

I agree with my friend Ken Ross, who said of Yo Yo Ma in his review on Masslive, "One thing I will say about Ma that really makes him stand out - he always looks so happy to be performing on stage. Some artists might look like tortured souls. In contrast, Ma often has a genuine smile on his face when he's playing. And today was no exception. Other things I noticed about Ma today during his performance of Schumann's Cello Concerto - his effortless transitions, his crystal clear tone, his lighter-than-air touch and his superb sense of rhythm."

Meanwhile, back to my feet...I  stretched and iced a lot during the week and began to feel reassured that the twinges would stay at just that. Though you never can be sure because it can sneak up on you.

Race volunteer
On Friday I was a volunteer at the T-shirt handout for the Bridge of Flowers 10-K in Shelburne Falls, held on Saturday. I was with others from Northampton's Cancer Connection, which, among other non-profits, benefits from the proceeds. We worked at the Shelburne-Buckland Elementary School for a couple of hours, with a break for a spaghetti supper and ice cream. When chatting with some of the runners while in line, I told them I was a runner who wasn't running...much. I told them I was playing a lot of tennis and the running was taking a back seat. Still, I had a twinge of envy as I gave out the T-shirts.

Afterwards, I drove to the Bridge of Flowers, walked across and back, and lingered for a while. In the twilight, it was so beautiful that it was hard to leave.

Bridge of Flowers at dusk
Yesterday when I woke up early enough to go for a run and with no tennis planned, I said to myself that if I was still a real runner and not a so-called one, I would take advantage of the cooler morning to go out and do it. With tennis usually taking precedence, I last ran about a week and a half ago.

So I laced up and stretched and out I went. My mind was its usual chatterbox, but by the time I got into it a little, it had quieted down. I got a taste of why I like it so much as I got into a little bit of a groove. I tried my best to pick it up a little between certain markers and felt pretty good.

When I checked my mileage on my phone after, I was surprised to see that I had gone 3.7 miles. Nothing hurt. Still, today, I got a few more twinges. I better pay attention to them. In many ways when you get to a certain age, running is not good for the body. But it is definitely good for the soul.

Saturday, August 5, 2017

Writing up a storm, coping with neuropathy and other things

At fun party in Fairfield for Nell's second birthday
I've been remiss in posting on the blog but busy writing in other places and doing things such as going to Nell's second birthday party (fun) and going to Dana-Farber for ECP sans my friend who was driving me because the friend is on the disabled list (not too bad of a drive because I had one of the best drivers though not great about the friend on the DL).

I wrote this one for the Huffington Post about how John McCain's brain tumor diagnosis sparked memories of my father's. And another  about the difficulties in treating neuropathy. I did research and interviewed people who suffer from this intractable problem that has plagued me since my last round of chemotherapy eight years ago. (It must have been the strong rabbit serum, or ATG, that thankfully knocked the leukemia out of me.)

As the people I interviewed told me, it is a strange condition in which your extremities (in my case my feet) are numb and tingling and painful at the same time. I had proposed it to an editor I met at the American Association of Journalists and Authors conference in New York this spring. It was through Client Connections, a sort of speed dating event with editors, in which you have nine minutes to present yourself and your ideas.

Callen snoozing
You don't always get a story, so I was glad I got this one. It was my first time and I admit to being flummoxed. I haven't heard from the two other editors and should probably follow up by sending them the neuropathy clip, which is not a clip in the old sense of course but I still like to use it. Marketing is a good part of this freelance life and not one that an "old" newspaper person like me enjoys, but I have to do it because there are a lot of us out there.

My story ran as the August feature on the website of the MedShadow Foundation, whose goal is to educate on the side effects of prescription medicines and the potential alternatives. Of course as I was writing it, my feet felt worse, and I imagined myself eventually incapacitated as were some of the people I interviewed.

Which is similar to when you're a reporter and you write about people suffering from different diseases and imagine yourself getting that same disease. (You might have tried to avoid the story by making yourself "invisible" by sliding down in your chair when the editor came by with the assignment that you knew was coming but somebody had to do it, and the editors knew the tricks.)

And then you Snapped Out of It, thinking of good things that were happening at the time or just bringing yourself back to earth by reminding yourself that you were writing about other people and not about yourself.

Part of dealing with neuropathy has to do with distracting yourself rather than focusing on it. So other things I have been thinking of include cute talkative Nell and cuddly newborn Callen (who I cradled in my arms at the birthday party); happy Ben and Meghan and Joe and Katie all doing such good jobs; the guy whose name I can't mention (due to confidentiality) who I'm now taking care of as so many people used to take care of me; coach George sharing his tennis wisdom which I keep saying I'm going to write down, (and saying to me at a clinic yesterday when I was tired and trudging to pick up balls, "On your toes, on your toes"); and tennis friends joking yesterday that the title of my autobiography could be what I said when we were doing volleys and I made the right shot with the wrong foot in front.

"I had the wrong foot, but I made it."

Watch Federer always using the correct foot!