Saturday, December 7, 2019

Big hugs for fantastic kindergarten teacher

With Patty Bein in Village Commons gift shop
The world has it back-asswards by rewarding multi-millionaires who do crappy things and not rewarding teachers who shape children in their formative years. I thought of this when I bumped into Pat Bein – Mrs. Bein – who had all three of my kids in kindergarten in a sweet little school, The Horizon School (no longer in existence) in South Hadley Falls.

Of course I had something to do with my kids turning out as great as they are, as of course did their father, but I wasn't exaggerating when I told her that my kids are who they are because of her. We were shopping at the Village Commons in the Arts Unlimited Gift Gallery, where most items (except the earrings I wanted to buy, insert frowny face) were 20 percent off during the annual Village Commons Days. We gave each other a big hug and talked for a few minutes. I showed her photos and she said their grownup selves looked just like their kindergarten selves! She remembered how worried I was when I left Ben for the first time and he cried his little heart out as I went to work. I called her as soon as I got to the newspaper, and she said he had stopped crying right away. She made me feel confident that they were in good hands. I did the glasses on, glasses off, photo in the middle of the displays at the store. At this point, my honey turned to leave. The store owner said he had lasted longer than most.


Glasses off



Meanwhile, Thanksgiving seems in the distant past, but I forgot to write that our little gathering of Joe, Katie and Jim went well. When I learned that it would be just us three, I felt forlorn. Then I sat back and thought about how silly it is that Thanksgiving is supposed to be big. In this post for Blood-cancer.com, I wrote about how Thanksgiving with my former husband is easier than it was during our married days when he got annoyed with the mess that my mother and I made in the kitchen.

I wrote, "It is easy to lose perspective when you’re as far “out” as I am. But periodically I remind myself to read what I wrote on my blog when I relapsed for the second time: 'I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren.' So what if I don’t see them on a certain day? I’m thankful that the generosity of my bone marrow donor made my predictions wrong on the dark relapse day."

By the way, the post was dated Dec. 25, 2008, and I gave it the headline, "Downhill all the Way."
Those were the days that people commented directly on the blog rather than on Facebook after I share. Twenty-five people commented. Two of them have died. One of them is my friend Patricia, aka PJ, my doppleganger until she wasn't. She wrote, "Adding my support to all the comments here. I wish I could do more than sit on the sidelines watching as you deal with this. Even though I can literally picture where you are (you could be in my old room), I can't imagine what you're feeling. It's all too much, and just wrong."

I really miss my friends PJ and Ann and our little sisterhood of leukemia survivors. We all knew what the other was going through, and we could sometimes even joke about it.

But I have digressed, as usual.

Oh, by the way, circling back, I'm sure that Jim, my then-editor, wasn't the first one to say back-asswards instead of ass backwards, but I first heard it from him during my cub reporter days at the Holyoke T-T, and I thought it was so clever and it has stuck in my head.

Tuesday, November 26, 2019

Thinking of different ways to treat a headache

Good headache medicine, with Katie and Nell
Due to the lingering headache after the car accident, on Thursday at my checkup Dr. Alyea said I should get a CT scan in case there was a little bleeding on my brain. He said it would not be the biggest deal if it was because then a neurologist could just put a needle in my skull and fix the problem.

It sounded like a big deal to me, but luckily the next day the CT scan showed I did not have bleeding on the brain. It's a good thing I didn't need to get a needle in my skull because first of all it did not sound like fun and secondly, I have enough of needles. The day before at the light therapy, I thought my nurse had gotten the needle in my troublesome left arm on the first try, but it was too good to be true and she had to do it again. All these days later I have a big black and blue mark. It's not a pretty picture but since I like purple I thought I'd take a photo.

At least before the light therapy, when I had my blood drawn for my checkup, I asked for and got Tina the nurse who used to be my BFF in the Kraft Family Blood Donor Center and who moved over to the blood draw on the second floor. She knew what kind of needle I needed in the right arm, for the return, in the photopheresis (light therapy for my graft vs. host disease)  that I was going to get after my appointment. So she put it in and left it in and said to tell them to remember to take it out because if I went home with it she would lose her job.

So, in case this is confusing, the timeline was, 2 p.m. blood draw, then appointment with Dr. Alyea, then the light therapy at 4.

At my appointment, Dr. Alyea said I could possibly cut down on the Valtrex. I said the last time I did that I broke out all around my lips. He said to get two shingles shots first (yay, more needles) and then try to cut back. I can get the shots at my pharmacy.

I have had to take more ibuprofen for the headache than I care to take. Ibuprofen: bad for kidneys, Tylenol: bad for liver; oxycodone, well, you know. I have settled on a low dose of the ibuprofen, maybe one tablet when needed. The Saturday before, I woke up with a headache and took a pill because I didn't want to have a headache for going to the UMass basketball game with Ben, Nell and Katie to hear Joe announce.

I love to listen to Joe announce. I loved watching my baby watch the game with his baby. I love hanging out with Katie. Love, love, love. As writers we try not to be repetitive, but I think it's OK if you're repeating the word love.




I didn't get to see the whole game because Nell was afraid of the Minuteman so we went out into the corridor and I bought her a little basketball and a big finger. She waved the finger at people passing by and said "Go UMass!" We played a little game to see how many people would answer. A lot echoed her. At that point my mind wasn't on headaches or needles.


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.



Sunday, September 1, 2019

From dermatology drama to fun day at the US Open


After a great birthday followed a day later by going to Jacob's Pillow on a beautiful afternoon to see the Boston Ballet, the theme of the next week or so, leading up to another fabulous but sweaty and exhausting day at the US Open, was dermatology.

Crowd behind us at tennis center
A spot on my neck had been driving me crazy. It looked funny. It stung. Not funny as in ha ha, but funny as in different from my other squamous cell cancers. I was frustrated by a lack of response to two calls to my dermatologist's office. By that I mean my primary dermatologist. As I wrote here, I actually have two. And if you count the Mohs surgeon, I have three. Sometimes I'm reminded of my old tennis team, Mass Confusion.

I wrote what my mother used to call a "blast" letter. In her beautiful handwriting, she wrote to complain about a service not provided as promised or a product falsely advertised or some other problem. She usually got an answer, and she sometimes even free stuff. Almost as soon as I wrote the email, on a Monday morning, saying how frustrated I was, I got a call back saying I could come in the next day.

New glass for my collection
Not wanting to ask for a ride every time I need some frickin' spot looked at, I drove myself in (after tennis of course, because I didn't want to skip.) I should know by now, but because I can't always trust myself, I put in 221 Longwood Avenue. Usually I go to Brigham Dermatology Associates at the easier-to-access location on Boylston Street, but I had to take what I got. (In a conversation at tennis, some of us discussed my possible need for a closer dermatologist to look at things like this. New England Dermatology, in Springfield, came up, but I said no, because although I had liked my doctor there, when I called up after my first transplant and said I would like an appointment, they said three months and I got in faster by going to Boston. I could try Cooley Dickinson because it's in the Partners system, but that is on the shelf for another day.)

The appointment was at 4. It is one office where I always wait. I think I got there at around 4:15, so I figured I was good. Nothing looked familiar. What had happened to the medical office building? I drove back and forth. I parked the car. I asked a passerby. A fuse had blown in my head, just like way back at 1200 Fifth when you had one too many things on and a fuse blew and you had to call the Super. There wasn't any Super. At least I said to myself, when I went back to the car to regroup, "This is when accidents happen," meaning, "Don't drive around like a crazy person." Suddenly it hit me. I was at 221 Longwood in Brookline when I needed to continue for about half a mile on the same street to get to 221 Longwood in BOSTON.

I drove to the right address and ran in. By then I was so late, almost an hour, that I didn't have high hopes. But I had arranged to stay at the D & D Lodge (Diane and David's) and was determined not to leave town without seeing some dermatologist in the Brigham Dermatology group the next day. Still I held out a little hope that my friend (Dr.) Jen Lin would see me.

The receptionist said that Dr. Lin was doing a procedure and wouldn't be able to see me. I looked down the hall. There she was. I caught her eye and waved apologetically. Then the mature thing happened. I started crying. By writing it sarcastically, "the mature thing," I know I am dissing myself and saying I was acting like a baby. Actually, I was probably understandably upset. I had been in pain, driving through Boston traffic by myself. (Question for next time: Ask for a ride?) The receptionist said Dr. Lin would see me after all. I could have hugged, first the receptionist, then the nurse, then the doctor.

I told her how sorry I was to be late. I knew she had a baby and a toddler at home and would want to get out of there. She said she knew how far I had driven and it was OK. She is very beautiful and always wears beautiful clothing. (One time I went home and ordered the same pair of shoes that she was wearing. ) I told her I liked her dress. For some reason that took my mind off my problems.

The thing on my neck was "just" another squamous cell in the making, or, in the skin cancer terms, an AK, or actinic keratosis. So was one on my chest and a few more on my neck. She said I could apply my new combo of Efudex and calcipotriene . Or she could zap them. I said please zap, meaning, use cryosurgery. She also gave a hard freeze to one on my scalp. I said I didn't know why I picked them. "Because they're annoying," she said. That made me feel better. She knew I was going to the US Open and would be in the sun, and she said that after it was over, I should apply the combination cream, which has shown good results, to my neck and my hands. I was having a personal problem. While she was zapping, I told her about my problem. Did I say we go way back? She gave me some advice and calmed me down about that too.

On court interview
I am not a fan of the chemo cream. Nobody who applies it is. The addition of the calcipotriene gives it super powers, I've been told. When I applied it to my face, I got a fungus on my lips. People who use it say it makes them irritable and has other side effects. I know this personally and because I wrote about it.  But I'm going to do it to stave off more skin cancer.

The reason she said to wait until after the US Open was because last year, I had had a problem with a reaction, also on my lips.  When I saw my friend Dr. Francisco Marty the other week, I laughed about how he had said to send a selfie with Nadal. This year we saw Roger Federer. I was going to write to ask him if he wanted a selfie with Roger, but the blowout against Daniel Evans was going so quickly that I didn't want the distraction. Our Arthur Ashe seats in the upper level weren't great, but we didn't go all the way up and were close enough. Last year, I jumped when Donna said, "I see Roger Federer" while we were walking around the grounds, but, alas, it was his cutout.

Seeing double? No, it's the Bryan brothers.
It was another great trip. Each year we seem to finesse even more. We knew everyone would want to see Coco Gauff play doubles so we didn't try. So we headed to Court 17 and got good seats for the first doubles match, which we thought Bethany Mattek-Sands and Coco Vandeweghe were going to win (but they didn't). No matter who you're watching on the outside courts, it is just fun to see how hard they hit the ball. We left when we got too hot and headed to Ashe to see Roger. Later we prevailed against a beer-toting obnoxious guy (really the only obnoxious person in the crowd all day) who wanted to push past us on the line into Court 11 later to see the Bryan brothers. Said he was bringing a beer to his wife, who was holding a seat. He was the second guy who said his wife was holding a seat. I said my wife was also holding a seat and besting him in the obnoxious category, added, for good measure, "That beer will make her dehydrated anyway."

It was great to see the "old" twins (they're 41) win. Later, I appreciated it even more when reading about Bob's comeback after hip surgery. We also tracked down Joe, who is working there on behalf of IBM. As in previous years, I was just kvelling to see my "preemie" all grown up and doing such cool work. A day on the pavement, from 11 a.m. to 7:30 p.m., followed by the walk through the train station and along Citi Field to get to the bus, was pretty exhausting, so much so that in the morning I couldn't think of getting up to go to tennis, but I loosened up after hobbling down to Serenity Yoga.

I'm sorry to sound so vain, but I complained about my wrinkles in the photos with Donna and Joe. Sometimes I forget that it's pretty cool that I've lived long enough to have wrinkles.

Then after a nice young person took a selfie at a fun gathering last night, I said I didn't look so bad after all. She said it was all in the light.

Back to the bus trip...The light of course was all gone by the time we got back to Enfield a little after 10 on Friday. I hadn't even noticed the time passing on the ride back. Sleepily, Donna and I had talked almost all the way back, reliving our "good work" of navigating the grounds without mishaps and reliving, with the good humor that hindsight can bring, our first trip, in 2013, when we didn't know where to go and I was sick from something or other and dehydrated after drinking maybe two of the special Honey Deuce  cocktails. At the end of the day, our friend Deb was running ahead to get to the bus and trying to get Donna to get me to move more quickly and maybe even put me into a cart.  Donna said something like, what am I going to do, carry her, and then we finally got on the bus and it wasn't a pretty picture and I assume I wasn't able to enjoy the USTA bus tour brownies like I did on Friday along with everything else we did.

With friends Molly and Betty Czitrom


Saturday, August 24, 2019

For starters, birthday kisses from the dog

The first words out of my mouth today (at the crack of dawn, as my father used to say) were, "Go away, it's my birthday," but when the dog who doesn't bark made her intense yelping sound, I got out of bed and got down on the floor for our morning routine.

My arm over her back, her paw over my arm. I rub her belly and back and we look into each others' eyes. That is my morning medicine. I tried to take a photo, as you can see, but she doesn't like it. She went across the room and I tried it again. The sexy attire I'm wearing is one of my father's T-shirts. I had a drawer full of them and gave a few away and now I think I gave away too many because I could wear this one down to shreds. I talk about my mother a lot, but a photo of him pops up at odd
Gray haired ladies
times when I'm looking for something so I believe he's around also. I think he would be (I mean, I think he is) proud of my serve. He was proud of everything I did but worried about my serve. He wanted me to take the racquet back further down my back. I think I finally figured it out, thanks, of course, to serving lessons with George. It's not that hard but I twisted it and put a little slice on it.

Hi Dad!
You don't want to use the word torture for things that aren't really torturous, in light of all the horrible things in the world. Taking it down a level, in the past couple of days, people found different ways to "torture" me. First, on Thursday, when I checked in at Dana-Farber for my checkup with Melissa, the intake guy asked if I wanted them to leave the needle in, after the blood draw, so that it could be used at my next procedure, at 4 p.m., the ECP at the Kraft Family Blood Donor Center. Nobody ever asked me that before, but I said sure. Tina, a nurse who became my friend during my first year or so of ECP, had changed jobs and was doing the blood draws on Yawkey Two. She came over and explained the required needle to the nurse. The nurse got all FARBLUNGET.  Instead of putting in the required bigger needle, she did the usual one and slapped a bandaid on. This was after Tina had called my nurse Deb at the Kraft Center to confirm what I would need. Later when I got there and she asked if nurse number 1 had left a needle in and I said she hadn't, she said, sarcastically, "Of course she didn't."

So I got stuck three times instead of two.

My appointment with Melissa was mostly about dermatology. She said she would try to straighten out the confused state of affairs having to do with three dermatologists telling me three different things to do about my skin. Especially my hands, with each of them contradicting the other on how to deal with the pointillist canvas of pre-cancers and who knows what. But I don't want to ruin the day by getting too much into that.

My numbers were great. My platelets were normal, yay! I used to get the printout but I don't anymore. I know that normal platelet range starts at 160, and when I heard 190-something that was all I needed to hear. If you search the blog for "platelet," you'll see that I've always had a platelet problem.

Dr. Marty came in with a new doc on the block. We gave each other a hug. He explained to the new doc how we go way back. We laughed about what happened at last year's US Open when I had a crazy, itchy, burning rash and cold sores around and on my lips having to do with a "perfect storm" of decreasing Valtrex, an antiviral, and using Efudex, the chemotherapy cream. I wrote him and Melissa, and almost as soon as I sent it, he replied, "Get a selfie with Nadal," because I said that's who I was watching from the nosebleed seats. I wrote back that he was too far, and he said something along the lines of tell him to come up to you. As for the lips, I think he said to go back up on the Valtrex and use Vaseline. He had already given me some good medicine by replying so quickly and making me laugh.

Oh I almost forgot the other "torture."

At occupational therapy, Karen, the therapist, made me a hand brace to open up my left hand while I sleep. I sleep with my hands curled up into fists underneath my chin. Now I won't be able to do it. Together with hand exercises (when I do them), my hand is hopefully going to be able to flatten out in yoga (or any other time I want it to) and my hands will hopefully be able to get into "prayer position," the inability to do so having to do with graft vs. host of the skin affecting my fascia. In general, we don't want it to turn into a claw. I texted the photo to the kids and Katie said that looking on the bright side (if I can sleep) I'll be able to do a better down dog, which is just what I was thinking also.

I was walking around with the backyard birthday photos, at 77 Coronado St., Atlantic Beach, with Jane and Michael Kass in them and now I can't find them. They seem to have morphed into other beach photos. They'll turn up next time I'm looking for something else. They're such good memories. One of these days maybe I'll recreate something alone the lines of what my Vassar classmate, Amy Drake and I, did after college, driving down the coast (all the way from Portland, Oregon!) to LA. Now I should stop and get ready for a little trip to Fairfield for a little celebration to see some of my favorite people and talk to others.

I'm ether 65 or 10. Who knew?








Wednesday, August 21, 2019

Getting a 'visit' from my mother, thinking about Atlantic Beach birthdays

Atlantic Beach birthday 
A week or so ago I dreamt that packages were arriving with my address in my mother's beautiful handwriting. I was confused. I sensed that she was around but was upset that I couldn't see her.

Then last night, she was standing right next to me saying she had sent them. It was so good to see her. Maybe she sensed that just sending the presents wasn't enough and that I needed more. 

I had the dream that I have had before. I want to go to the beach house (in Atlantic Beach) but we can't go there. Someone else is in the house and they won't let us come. My parents say we just can't go there anymore.

The puddles in the streets here in South Hadley the other day reminded me of the puddles on Bermuda Street, riding our bikes through them after the rain. The humidity made me think of driving to Long Beach to get ice cream at Baskin Robbins, my mother getting mint chocolate chip.

Best present ever
My informal research has turned up an interesting factoid: Birthdays weren't such a big deal in some families, but they definitely were in ours. At night: "Wake up to a happy birthday!" In the morning, sleepily, kicking the present at the foot of my bed with the crinkly light blue cover. The present of all presents: the blue Smith Corona typewriter. My sister was jealous about my summer birthday and I was jealous of hers in the winter. I didn't like being thrown in the pool, at day camp, with my clothes on. The parties in the back yard were pretty sweet, though. The trips to Cedarhurst to buy the party favors were a lot of fun. She made a centerpiece and attached ribbons to it and the ribbons went to each place with a little favor on it. The memory game helped me later on in my writing. Study random items she put on a tray and try to remember as many as possible and then write them down.

Later when I outgrew the parties, my parents took some friends and me out to dinner.

My 50th birthday party, here in South Hadley, seems like yesterday. It was more than a year after my first transplant, so I had gone back to work at the newspaper. Paper people and neighborhood people were coming. I was just going to have cake. "You can't just give them cake!" she said, or something like that, and we rushed to the store and got what turned into a big festive spread.

I have also had the usual nightmares. I want to go back to work but the newspaper has closed. Or I go into work and there are more empty desks than there are people.

In real life, though, I've done some dreamy and maybe even daring things. I rode Margaret's e-bike and got the feel of it. It wasn't really daring because it was on a bike path, though daring because my crew doesn't trust me on bikes. A matinee at Jacob's Pillow, to see the Martha Graham Dance Company, with a drive on back roads to and from, was dreamy. A ladies' lunch with Tami/Tamar in West Hartford (our annual summer meeting) doesn't fit into daring or dreamy but I'm into the Ds so I'll say it was definitely a lot of fun.
Headless at Tanglewood

Did I say that I have a big birthday coming up? My sister reminded me that it's cause for celebration. Part of me knows that. The other part has internalized our culture's ageism and thinks I'm pretty much over the hill. At least I can walk up a hill when at many points I couldn't even do that. I didn’t get past Season Two of Grace and Frankie and decided to revisit it and I’m glad I did because it’s making me laugh about all this aging stuff.

On Sunday when we were at Tanglewood, I was taking a photo of the beautiful scenery when a woman came up and asked if I wanted her to take a photo of me. I said OK, sure. She chopped my head off. Maybe she was trying to tell me something.

Wednesday, August 14, 2019

Mass confusion on the scheduling and dermatology front


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I thought I had two good things to report on the medical front but it turns out there is only one: I felt better as soon as I got my stitches out of my neck last week. I was free to go to tennis and do yoga without worrying about straining my neck, and I was pain free. Yay!

 The other – which would make a big deal in my life and give a break to my veins – was supposed to be switching to every three weeks, instead of two, for the trip to Dana-Farber for ECP, aka extracorporealphotopheresis for graft vs. host of the skin, aka the light therapy, aka the internal sunburn, for softening up my tightened skin. When I went last week, the Young Doctor, aka the resident whose name I forget, said since everyone had been talking for so long about switching to three weeks, why don’t we go ahead and do it. I said OK. She said she would have the scheduler put me down for Aug. 29th.

Me with "bangs"
Today I looked in Patient Gateway and saw that I was scheduled for Aug. 22nd, which is two weeks. It takes a lot of energy to keep on top of these things. Last time they had it wrong too, unless they changed it on purpose without telling me. Instead of scheduling me for two weeks from the previous time, they scheduled me for three, then went back to two. I wondered if they had switched me to three without telling me but then I wondered why it had popped me back to two.

I’m also trying to coordinate a checkup with Melissa with the ECP days. So this matters. As I’m trying to write and/or pitch some freelance stories, I’m distracted by this confusion. I wrote her that maybe they were just trying to test my mental facilities to see if I caught the mistakes. There should be a better way. I think the name of my old tennis team, Mass Confusion, could apply to some of this stuff.

On the dermatology side, the Mohs surgeon told me to apply a combination of creams all over my face, to treat a couple of squamous cell cancers in situ (on the skin) and head off other ones. It is Efudex and Calcipotriene , which someone online summarized as giving the Efudex superpowers. It caused a side effect of a fungus on and around my  lips. They burned like crazy. When I went to get the stitches out, my internist gave me a cream that made the fungus go away. I called my primary dermatologist to ask if I should still apply the cream combination. I left a message but didn’t get a return call. I stopped applying the cream combo. I guess if I want a definitive answer I’ll have to call the office again or email my dermatologist.

At tennis today, after I had put my pill box down on the table (because I had taken some pills on the way over) George asked how many pills I took a day. I guess I could count. I think it’s maybe 25. I said somebody called me a chemistry experiment. 

Also in between things today I had fun texting with Katie about maybe getting bangs. I took some hair from the bottom of my hair and put it over my forehead to show the effect of bangs. Maybe Katie and I will do it together. Also on the so-called beauty front, remind me to never get another gel manicure. It totally wrecked my nails. I did it for one of the two spring weddings I attended and thought it would be OK, but a few of my nails split in two and broke down below the nail line. I’ve been told it might take at least six months for them to recover. When I showed them to my dermatologist at the last visit, she said another reason not to do it is that you’re getting UV radiation when they bake the color on. I hadn’t thought of it but now I’m aware. 

My medical people have remarked on how strong my nails remained throughout everything I’ve been through. Leukemia didn’t ruin them, but a visit to Lucky Nails in Northampton did. That will teach me to be a walk in. If I had read the reviews, I wouldn't have gone. Well it is kind of weirdly funny to get unlucky after a visit to Lucky Nails so maybe I can laugh about it and after all they will grow back. I thought of going in and showing them what happened but what are they going to do? Give me my $25 back? Actually I think I paid an extra $5 for the gel. BTW it was my second and last time.