Monday, November 11, 2019

Redo of Boston trip, this time without mishaps

It's probably not cool to write that I was in a car accident and then disappear, so, I thought I would check in and report that I made it to Dana-Farber on the second try, a week after I was on my way there and ended up in the ER. I still have an on-and-off headache but not as bad as it was.

I was nervous. It was rainy and windy, just like the week before. The driver was an old hippie (nothing wrong with that) who had Dark Side of the Moon on the radio. Nothing wrong with listening to an album whose "heavy lyrical musings on the human condition inspired countless bong-fueled headphone listening sessions in darkened bedrooms." It carried me back to college and my "junior year abroad" at Wesleyan University. I remember a particular scene with the songs playing in the background. Days of innocence and all that. In the car in the rain with a headache it kind of creeped me out.

If you have  to go to the hospital for a procedure, going to the Kraft Family Blood Donor Center is a good place to do it. My ECP session (the light therapy on my blood) started out on a good note. I must have been well hydrated because the needle in each arm went in on the first try. Interesting what gives me pleasure! They are all so friendly, and they all hate Donald Trump. They have are funny and kind and are good at fluffing pillows. From one of them I learned something new. He has a spiritual advisor. My nurse for the day said another nurse had shown her a video. I thought maybe she was making it up. But sure enough on my way out, the other nurse showed me the video of Paula White offering a prayer condemning the president's opponents, "accusing them of being aligned with evil spirits and using sorcery."

School photos!
The nurses have become an extended family.

When I showed one of them the school photos of the kids (the grandchildren, who, back in 2008, I thought I would never see), her mouth dropped open. I thought something was wrong. But it wasn't. She said she was thinking how much Nell looked like a photo of me, as a child, that I had showed them a while back. I don't see it, but some say that Katie looks like me, and I don't see that either. In any case I like showing them off.

The drive home started off on a strange note that was different from the strange one on which the trip had begun at 2 p.m. that day. Usually the drivers live in Western Mass, and the one who drives me sticks around. For some reason I had a Boston-based company. The old hippie driver had complained that he had been driving since 4 a.m. and he had no idea why they sent him out to get me. A different driver was going to bring me home. I said I hoped they wouldn't forget me. They didn't forget me, but I had another who lived in Boston, and he didn't seem to know the route back. I wasn't paying attention when we headed back around 6:30 p.m. Then I noticed that he was on Route 20. I asked why he wasn't using the turnpike, and he said it was because his Waze had told him to go that way. I said there were a lot of lights on this road and he should take The Pike.

"I can't help it that there are a lot of lights," he said.

I asked what his app said our ETA was. Mine said 8:30. His was around 9:15.

He agreed to find the turnpike entrance.

Wednesday, November 6, 2019

Car accident leads to week-long headache

I was in the back seat of the first car
I haven't complained lately about the drivers to Dana-Farber, because actually they've been fine. I have to complain about my ride, however, last week, when another driver on the rainy and windy day, swerving to avoid a car that had hydroplaned, hit the car I was in instead. I was amused by the idea of getting my blood sucked out on Halloween but it wasn't to be.

We were on the ramp at Exit 14 – almost there – so at least we were not going fast. (Most everyone goes further to avoid Route 9 but this driver, Michael, says they are the same.) In any case I was sitting in the back, on the passenger's side (that was another stroke of good luck) and minding my own business eating an apple when I felt an impact from the left side of the car, and my head banged against the window. The car got pushed off onto the side of the road. I got out, as did the girls in both cars. I called 911. Michael called his dispatcher, angrily talking up a blue streak in Russian. (I hope the hit on the head hasn't made me spew out cliches because I realized I just used two of them.) I wish I knew what he was saying. The one behind us said she had just called her mother. I thought maybe she should have called 911 but I did it. She said it was her first accident. I told her nobody died and just breathe. I remember being in an accident and it being my fault and being screamed at and it not being helpful, years ago. You don't cause an accident on purpose so I wasn't really angry but I'm pretty sure I was in shock. 

A paramedic arrived and asked me if I knew my name and then asked if I needed an ambulance. He said he had to get out of there as quickly as possible because it wasn't his jurisdiction. (Sorry for the inconvenience!) The police officer who came said the paramedic could leave. He got everyone's information and said everyone should get off the road. 

Nice setting for rainy day run
I called the Kraft Family Blood Donor Center, where I was scheduled to receive ECP, the light therapy on my blood, and Ellen, the PA, said they couldn't possibly do it because they use a blood  thinner, heparin. Michael said he would take me to the Brigham and Women's emergency room. He got all discombobulated and said he didn't know where it was. I said I could get it on my phone. Then he said he knew where it was, but instead he took me to the Beth Israel Deaconess Hospital ER. Then he turned around and headed towards the Brigham when I said that wasn't it. I could see it on the left but we were stuck in traffic so I said I would just get out and walk the block. (Probably not a good idea.) At check-in, the guard had me stand on line. (Still a New Yorker.) I said I thought I was in a little bit of shock and had been in a car accident and maybe someone could take my information. The next person saw me and got me into triage. My blood pressure was 200 over 83 or 84. I started crying. The nurse took me to a bed in a line of beds in a corridor.

A couple of doctors checked me out and didn't see the need for CAT scans or anything invasive. A doctor gave me some Ativan and two Tylenols and an ibuprofen and said to check in with my primary. The docs said I would need to wait a week to go back for the procedure. I was out of there on time for the frazzled Michael to pick me up. His car was damaged on the drivers' side but it was drivable. I'm lucky that I wasn't sitting behind him because then the impact would have been worse.


Healthy car lunch
I've had a headache on and off all week. My efforts to write have not been fruitful; I get a headache when looking at the screen. I did have to do interviews for the story I'm writing for Chicago Health Magazine, on Parkinson's Disease. There is no real evidence to support a causality between head injuries and Parkinson's, although there is some speculation, but that didn't stop me from going partway over the cliff. Back at the newspaper, we un-woke-ily said we had the disease of the week when we wrote about various horrible things that happened to people. So...here comes another cliche, it is par for the course for me to think I'm going to get Parkinson's. I have had worse head injuries though and so far so good.

I called my internist's office on Monday. I used to see Dr. Berger, now retired, who showed up on the tennis court at the Enfield Tennis Club's Friday mixer last week. He is the doctor who diagnosed me with leukemia. It was definitely interesting to see him the tennis court. I didn't end up playing with him or against him but I might some time. In any case I talked to the secretary for the doctor who replaced him and told her I was considering going to my chiropractor. She said she didn't know about the ER visit and said it was a good idea to go to the chiropractor. Then I got a call from another woman, at the same office, (first Lisa, then Meg) who said she knew of the ER visit and wanted to know if they could help me. Insert eye roll. 

On Monday, Keith McCormick, my chiropractor, did some tests and adjusted my neck. My blood pressure was still high but not crazy like it was. He said the high BP made sense since I've been in pain. He said I probably had a slight concussion and a case of whiplash. I have called the internist's office and left a message for Meg, to see if they want to see me. As it stands, I was scheduled for acupuncture today so I went ahead and did it. I'm going back to see Keith on Friday and going to ECP tomorrow.

I got two calls from Pilgrim Insurance Company, representing the driver of the car I was in. First Greg, then Joanne. I talked to Joanne. She wanted to know what happened. I asked what she knew. She said she didn't know I had gone to the ER and she wanted to know how I got there. PEOPLE. Wasn't there a report? Just talking to her increased my headache, which I thought acupuncture had ameliorated this morning. I told her that my chiropractor said I had a concussion. She said, "JUST a chiropractor? They have different training." I sensed she was getting at something, like, maybe the exam didn't count. I said I have also checked in with my primary. She asked about loss of work. I said I'm a freelance writer who needs to look at a screen and it has been hard to work. She gave me the claim number and said to send the company all my bills.

Today I have a dental checkup. I love Dr. Debian, of Holyoke Dental Associates, and I'll be interested in hearing what he has to say. 

The car accident day had started out well. I figured I should do a little running in preparation for The Hot Chocolate Run. I went 3.5 miles in the drizzle and got a taste of the good feeling of running in the rain. The leaves made a carpet. I was pleased that I had done it and that I hadn't tripped. I made a healthy lunch and sent a photo of it to my friends. I said I had forgotten to put in a fork but was making do. Then I texted that on a more serious note I had been in an accident.

Silver lining: At least the pain in my head has distracted me from my neuropathy.

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.

Thursday, September 26, 2019

Mini vacation, much beauty, no accident...sort of

Duck Harbor sunset
The three nights, four days, in Wellfleet isn’t totally over so I don’t want to jinx myself, but at least the bike part is over and I only hurt myself a little. No, I didn’t fall off like I did the past two years. I don’t know how it happened, but when we were going up hills along the beautiful Ocean View Drive, one of the derailleurs came loose on the collapsible Birdy Bike and the chain dug into my leg. It was at a point when I COULD have fallen but I steadied myself and got off and my traveling bike mechanic got it back in place.

I’m not sure how far we rode, maybe 10 or 12 miles, with the hills making it more difficult than a flat of the same distance. We stopped at a couple of beaches, first at Newcomb Hollow, and looked somberly at the memorial for the 26-year-old surfer killed there last year in a shark attack. On a more cheerful note, we talked to a couple from Long Island, and with the woman I reminisced about back-to-school shopping in Cedarhurst and buying a plaid dress with my mother. I want to call the store Bib and Tucker but I might be making that up.

Down by the bay
I joked that the first full day I did a triathlon. First the bike ride, then a run on the beach, then a swim in the bay. I was hesitant about going in but a man and a woman who were in the water said it was warm, and someone else on the beach said, “No sharks.” That seems to be what people are thinking about these days. We talked to the Rec Department guy at the tennis courts, and he said he noticed over the summer that the crowds seemed a little diminished. Then some cute little kids showed up for soccer practice. The courts are next to the playground where Nell and Callen had such a good time this summer. We thought of “hitting a few,” as my father used to say, but we figured we could do that at home and we should do other things here. At low tide I found a crevice between two rocks and enjoyed watching the clam boats. You can’t do that at home.

2009, Eastham beach
The sunset at the bay was spectacular. As people arrived to watch it, I thought of watching the sunset at the bay in Eastham. The crowd clapped in appreciation in Eastham; over here in Wellfleet they don’t seem to be quite so ebullient. Different cultures, one town away, who knew.

 Down at the Eastham beach, Katie and I took the same photo on a log over a period of several years. One year I was recovering from lung surgery, before my first transplant, and they couldn’t leave me alone so I went on a vacation that Jim had planned with the kids. We did it other years just because it seemed to work. I found a photo of us recreating the pose in which we looked over our shoulders. It was in August, 2009, after my fourth transplant. My hair was a little different.

Thursday, September 12, 2019

Talking about good reasons to ride

Me, left, with Margaret
When I looked up A Reason to Ride, in order to get the link for the background on the fundraiser for cancer research at Beth Israel Deaconess Medical Center, I was pleasantly surprised to see the the 10-mile route was really 11.8 miles. As a certain friend has remind me, the distance isn't what matters. I have a thing in my mind about the old 80-mile bike trips with Rook .(Did we really do that or am I overstating? I'll have to check. ) But that was then and this is now, and the good news is that:



  • Starting in Danvers, I did the scenic route on a sunny day with my good friend Margaret and a group of others for a good cause, cancer research,
  • I'm not exactly in biking shape, but I went up the hills without getting off, with exertion manageable enough that I was able to chat with Margaret for part of the ride,
  • I realized I was riding with one brake (the back) and nothing bad happened,
  • At the end, I had fun eating (part of) a giant Fuddruckers hamburger and schmoozing with people who had ridden or walked. 
  • I made a financial contribution.

At the end, one of the "real" bikers looked at my front brake and fixed it by simply reconnecting two parts that had come apart. In the old days I would have realized what to do but that part of my brain has been superseded by other things.

The ride choices were 10, 25 and 50. When we were done, I said I thought I probably could have done 25, which is as much a factor of things people might automatically say when they finish (I could have run faster, could have ridden farther) that could spur them on to do better, as it is a factor of nostalgia. (And perhaps self-deception?)

On the other hand (when I say this I can still hear my old boss saying, "on the other hand, I have five fingers) I know that 11.8 miles is pretty good considering that at one point I couldn't even get out of bed or walk the full length of the nurse's station. And it was a fun day doing the almost 12 miles.

I enjoy the feeling of riding a bike, the breeze in your face and all that, and will consider this a good sign for doing more of it. Some of my team members aren't fans but now that I showed I can get through a whole ride (kenahora)  maybe they can let that one go.

I got an email from Safe Passage about signing up for the Hot Chocolate Run, which is coming up on Dec. 8, so I need to put down my tennis racquet long enough to do pay attention to my running, which I should do anyway or else I might have to change the name of my blog from Running for My Life to Tennis Playing for My Life, but it doesn't have the same ring.


Thursday, September 5, 2019

'Bernie' waves goodbye to summer; I get my blood 'sunburned'

"Bernie' waves goodbye to summer
In Atlantic Beach, you might have thought that the summer ended on July 4th, from the way my father sounded so sad when he raised the flag and said, "Summer's over." It was a routine. My mother would say, "Al..." She didn't need to say much more.

Of course even after Labor Day, it isn't actually over, but the melancholy that washes over (most of) us makes it feel that way. Though I remember Mimi having me write a story, back at the paper, about people who loved the crunch of acorns under their feet and felt revived and relieved when summer officially ended. The other day I dreamt that I really wanted to drive down to the beach to see my parents, but I didn't do it because I knew the Labor Day traffic would be too bad. It didn't occur to my dream self that they wouldn't be there.

They had framed a New Yorker cover that I hangs on my wall now. Their friends Bernard and Muriel Glazer loved Fire Island. After Bernie died, this cover came out. The man waving goodbye to the ocean bears an eerie resemblance.

Car food
Today was my first ECP visit with a gap of three weeks, as compared to the two that I have been doing for a while. The last time I tried to extend the time between the sessions for the light therapy on my blood, to lessen the skin-tightening effects of graft vs. host disease of the skin, my stomach started to harden again. That was a while ago. So far so good. As previously noted, I don't really mind going to the Kraft Family Blood Donor Center except for the part about the needle in each arm, and today, the added element of blood dripping down my left arm and Rosalie having to thread the needle in because the needle wasn't cooperating in drawing blood even though it was in. I had missed some of "Sharpie-gate" so she updated me. They REALLY dislike Donald Trump. 

I didn't have much time between tennis and the time that a driver would be picking me up, so I made a "picnic" for the back of the car. The driver was interesting: a minister transplanted from Jamaica to Worcester, he was listening to Radio Jamaica. (I wrote a stream of thought about it on Facebook.) On the way back, the Jamaican news seemed to be obsessed with body count in the Bahamas. Watching it on the news, and reading about the devastation, and getting incensed by the climate deniers (and wondering what exactly they're denying) was horrible enough. But the announcer kept talking about bodies piling up and more refrigerators needing to be found to store them. I asked him to change to local news. He put on Christian broadcasting. 

I listened to, and watched, everything on the US Open app and talked on the phone. I forgot to bring headphones and so I held the phone up to my ear. I tried a meditation app for public transport but quit as soon as it said to find a place to lie down. Now I'm eating chocolate ice cream with Evelyn Hatch's coffee cake mixed in and thinking of calling it a night.