Friday, October 18, 2019

In the woods and in Oklahoma, in New York

Central Park woods
I “only” got stuck three times in my most recent ECP session, so that is progress.  I thanked the nurse who got the needle in my arm on the second try. She said she didn’t know why I was thanking her and I said it was because the last nurse did it three times. It is a very yucky feeling when it doesn’t go in right. They get it in but it hurts in an unusual and specific way that tells me it has to come out and they have to give it another try.

The added Cymbalta at first seemed to help my aching feet, but then it didn’t, and it is confusing and upsetting because no one person says the same thing as to whether to add a certain drug or try more CBD and a small amount of THC and if so, how much and how often. I am on a relatively low dose of gabapentin – 1500 milligrams a day – and the neurologist had said I could take more but didn’t specify how much. I met a woman who is on 2,400 mgs., and it seems to help but then it messes with her head. Neuropathy sufferers can bond the way plantar fasciitis sufferers do. If you don’t have it, you don’t get how pain in your feet can affect your head. The woman and I talked about how odd it is that your feet can feel numb, and as though they’re wrapped in gauze, and be painful and tingling at the same time.

I think I need to see the neurologist again to get more specifics, and now I will just revert to an oldie but goodie: yada yada yada. 

Though I haven’t been having luck with my feet, I’ve had it on a couple of other fronts while in New York for a week.

View from theater seats
On Monday, I went to a yoga studio where I’ve been a couple of times, YogaWorks Eastside, and said I wanted to pay for a week’s worth of classes. The person at the desk said he had no record of me, and therefore I did not exist, and therefore I could have a free week of yoga. And also a free loaner mat. I wasn’t going to protest. He signed me up for a week’s worth of classes. The teacher of the Hatha Yoga class that I was about to take was listening. At the end of the class, she smiled and said, “Now you exist.” I took the same class today, bookmarking the week. I haven’t done yoga every day since I was in Costa Rica! 

The guidance has seemed very New York, focusing on getting anxiety to subside and quieting the tendency to rush around mentally with all the physical rushing around city streets. Since some might say I’m a little bit hyper (yes, also anxious) and that I rush around more than I need to (with the city possibly imprinted on my psyche), it has suited me well.  


The other day I entered the Today Tix lottery to see if I could get $40 rush tickets to see Oklahoma. (Following my daughter’s lead, again.) After yoga I walked through a downpour to Circle in the Square theater so I could talk to someone in the box office about seating availability. I usually do it on line but different sites had different prices and I wanted help sorting it out. It was 2 p.m., the time of the lottery drawing. I didn’t get the tickets, but I got an offer of $60 per ticket for seats that cost twice as much on some sites. 

The box office person gave me seats in the second row, and since she did it for me, I didn’t have to pay the service fee that I would have had to pay on line. The downpour continued through show time. It's a good thing it wasn't cold, because my feet were soaking wet. As my theater scout warned me, it had very dark undertones. Still, it leaves you humming.

As the New York Times review explained: the director has "reconceived a work often seen as a byword for can-do optimism as a mirror for our age of doubt and anxiety. This is “Oklahoma!” for an era in which longstanding American legacies are being examined with newly skeptical eyes. Such a metamorphosis has been realized with scarcely a changed word of Oscar Hammerstein II’s original book and lyrics. This isn’t an act of plunder, but of reclamation. And a cozy old friend starts to seem like a figure of disturbing — and exciting — depth and complexity."

In other news, I ate a giant matzo ball and walked in the North Woods section of Central Park, an unexplored area for me. At least the neuropathy doesn't keep me from getting around. Putting CBD lotion on my feet seems to help. In any case it feels good. 

Tuesday, October 8, 2019

Neuropathy attack, multiple mishaps, not a good way to start the year

We didn't have the best ending to our mini vacation on Cape Cod. It worked out for us to stop at Dana-Farber for ECP, the light treatment on my blood. The timing itself wasn't the problem. My veins and the weather were.

I had to get stuck five times before the nurse could get the needles in. It was three on the left arm and two on the right. (They use two needles, one for the "draw" and one for the "return.") She said I was very "valve-y." I think it's a made-up word. The needle kept hitting a valve. When it happens, I can tell from the feeling. It is not a good feeling. I asked if it was due to dehydration and she said no. I wondered if switching to every three weeks had something to do with it, but they really don't seem to know. I said I could use something strong for the pain and she said I didn't need it. She was probably right because it wore off, but if I remember, next time I'm going to bring my own, as Melissa had suggested. 

It poured on the way back in the dark. At least it was great during vacation, but it wasn't good driving weather.

On my "recovery day," the next day, I went to tennis at the Canoe Club, and the day after, down to New York. For a Jewish-themed weekend leading up to Rosh Hashanah, Katie and I saw (and loved) the Yiddish Fiddler on the Roof. They show the translation on the side panels, but half-way through or thereabouts I didn't even need it that much. The Yiddish really enriches the story. We went for our traditional Rosh Hashanah services at the 92nd Street Y, then lunch with cousin Joanne and dinner at my cousin Betsy's in Queens.

Something has set my neuropathy off in a bad way. I wrote Melissa: Neuropathy attack! I thought maybe it was from walking around in New York in the wrong shoes. But that was a week ago so I don't think so. The buzzing and tingling was so bad the other night that it brought tears to my eyes. I realized that I wasn't breathing. OK, I was breathing, but they weren't good breaths. It's hard to catch a good breath when you feel like your feet are in electric sockets. I took a sliver of Ativan and one of oxycodone and went to bed.

The medical marijuana doesn't seem to do it. I went back to the dispensary for another consult and came away deciding to try a combination of about 10 drops CBD and two or three of THC (Sativa). The Indica gave me something I didn't know had a name: couch lock. It didn't help. Today I saw the advanced practice nurse who is advising me on my meds. We think it might be from a medication that I dropped, that might have been boosting the gabapentin. I had reasons for not wanting to take it but I went back on a lower dose.

It bothers me less when I am moving, so I kept up with my tennis.

The perfect spot
Last weekend, I drove into New York (and found the perfect parking place, good all the way from Saturday through Tuesday, well, actually Thursday but I wasn't staying that long, but almost did, just to keep the spot), and rode the subways, and walked all around, and nothing bad happened, and then when I came back, I was a magnet for flying objects.

The next Monday at tennis, the player on the other side didn't realize that I was about to turn around when she sent the ball back. It hit me straight on in the eye and knocked my glasses off. My father did this to me way back in Nantucket and I got a black eye. I thought it would happen this time but it didn't. Maybe because I got ice right away.

Two days later, after tennis, the pickleballers were short a player, so we alternated filling in for them. I got whacked in the thumb with a loose ball. It hurt. There is something strange about this thumb. A tiny pinprick of a hole left over from a squamous cell never totally closed up. It likes to spurt blood on occasion. That is what happened after the pickle ball mishap. The balls are hard, like a whiffle ball, and it really stung.

Then after that, someone who won't be named tossed the tennis ball to me while I was holding my racquet in a position that would have made it impossible for me to catch the ball. Because, duh, I was holding the racquet, not standing ready to catch the ball. I ducked and it hit me. At least my glasses didn't fall off. 

George says that if you get hit it is your own fault, but I don't know about that

Tonight I went to Megan's Yin Yoga class at the Hampshire Y. It is like an extended savasana, or corpse pose, that you do at the end of a class. I usually like to be more active but I thought it might help my body calm down after the neuropathic pain sent electric shocks through my body for most of the week. I think it helped. Humor also comes in handy. I said when we were walking off the court that while a lot of people are talking about new hips and knees, I would really like to have some new feet.