Friday, December 29, 2017

Good days during Dana-Farber-free week

With the crew at Kate's Kitchen on Christmas
I hope I didn't sound too dramatic in my last post when I wrote that I fell. I healed pretty quickly and was back to normal after a day.

With no trips to Dana-Farber this week (woo-hoo), the days have been good.

Not in order:

On Christmas, I volunteered at Providence Ministry's Kate's Kitchen in Holyoke again. This was my fourth year serving Christmas dinner there. It was snowing and not the best morning to be out. When I got thereat 9:30 a.m., I learned that four families had canceled. The lot wasn't plowed yet, but my Subaru got me in. My first job was to take down the chairs from the tables and put table cloths on. It looked to be a bit much and felt overwhelming but then I reminded myself how much I had compared to the people who would be coming in two and a half hours later to eat. I didn't want to hurt my back, so I made a system where I turned the chair over and rested the seat on the table, lowering it in two motions instead of one.

Lotta tables, chairs Kate's Kitchen
About half-way through, two other volunteers arrived. They helped take the chairs down, put on table cloths, and put out place settings. It went well, and it turned out that some of us had a lot in common. As we sat waiting for more people to come in, we realized that a little corner of us were all from New York. It was good to meet the effervescent new director of Providence Ministries, Shannon Rudder.

Christmas Eve, Maddie and I went down to my friend JoAnn's for fondue with her family and neighbors. I was happy to see the two nice young men in the photo. (Said the elderly woman.) They used to be little kids! As I stood, looking confused, at the set up with beef, chicken, shrimp, bread and vegetables, plus cheese and other dipping sauces, someone asked where I was during the fondue craze.

I said we had small kitchens and therefore small fondue offerings!

The best part was probably the chocolate dipping sauce with Jo's father's homemade biscuits.

With Marc and Ryan Instrum
Today it was 1 degree when I woke up. Not a good day for a dog walk, but turned out to be a good day for a dog. I needed to exchange A Visit From the Goon Squad at The Odyssey Bookshop. Not because I didn't want it – it's next up for book club so I will be reading it – but because after I came home with the paperback, I sat down in the den next to the bookshelf and saw that the hardcover had been sitting there. Maybe I even read it, but I'm sorry to say I don't remember.

I would have tied Maddie up outside, but it was so cold that I brought her in. She was welcomed with big smiles. Everyone wanted to pet her. I took her around to get some other books and told someone that I usually leave her out. They said they'd rather she came in. We took a little walk but it was really cold. Then we went into the bank. She lay down, possibly thinking that it was an interesting day. Then it was back to the bookstore to pick up what I had left there to get wrapped. She sniffed around and then just plopped down, comfortable and warm. Now she is lying in the pool of sunlight on the dining room rug. The simple things.

Saturday, December 23, 2017

Falling down, getting up, going to Boston

Pretty relaxed with a needle in each arm
As I walked into The Kraft Family Blood Donor Center for my internal sunburn Wednesday, a nurse was asking another patient the routine questions, including, "Have you had any falls?"

I had planned NOT to mention that I fell the night before during a clinic at the Ludlow Tennis Center. Instead, I said, "Don't ask me." Then I told them anyway. I had a "good" fall, meaning that I managed to get back up and continue to play. My foot must have turned funny. I lost my balance and went down hard.

"Don't put it on my chart," I said.

Another nurse said they were going to put an orange bracelet on me to mark me as a fall risk. But he said it laughing. And I went over to him and started bouncing around on my feet to show him that I was OK.

I've said it before but I'll say it again: Except for the part with the needle in the arm for three hours, and the part with the unpredictable transportation, and the part about spending basically a whole day on it every other week, going to Dana-Farber for ECP is not that bad.

The driver was a nice older guy who said he hadn't seen me for a while. I couldn't quite place him, but when he pulled into a rest stop, I remembered that he is the one who stops a lot. Bladder problem or cigarette? Who knows. He took Route 9 in, and when I mentioned that the other drivers avoid this crowded road and go all the way to the end of Mass Pike, he said they are the same. They are not, and I was about 20 minutes late.

Marc, the nurse who got me to use two arms last month, came over and did it again. The secret to it is not asking. Because when the other nurses ask, I usually say no, I would really like to have the use of one hand.

But I had taken my oxycodone and was pretty relaxed. You can see it in the photo. The WHATever approach.

Afterwards I went to Diane and David's. Diane made a good dinner. I tossed and turned most of the night. It was probably the after effects of the oxy. Useful when needed for pain but a disrupter of sleep. I kept thinking that I lost my necklace, (one that Diane gave me that I wear most of the time) then waking up and checking.

It was probably a subconscious expectation of going to the dermatologist the next day. The last time that Dr. Lin (Jenn) did a full-body check, I took the necklace off and put it in my pocket. It got so tangled that only the detangler expert, Jim Bloom, could restore it.

Jenn had a resident who came in first. He checked out my spots and recommended doing another round of Effudux (chemotherapy cream) on my hands, also adding my arms. Dr. Schmults, the Mohs surgeon, said it works best when you wrap your hands, which I couldn't do, so the last time I did it I slept in exam gloves. He also recommended doing photodynamic therapy (PDT), aka the face fry, when an opening comes up. I said I thought my face looked OK.

"Is she coming in?" I asked.

Yes, he said, she was coming in.

She basically said what the resident said: The PDT, in removing a layer of skin, kills skin cancer cells. In addition, she said, they now recommend a follow up six weeks after. The resident zapped some places on my forehead and out I went to make the appointments. I'm not crazy about this but the literature says it is safe. And I have to believe the doctor.

The past two nights I have put on the cream and slept in the purple exam gloves. I usually pull them off at some point in the night and wake up with them next to me. The goal is to light up the red spots which can turn into cancer and the ones that may already be cancerous. The spots will then turn brighter red and then hopefully either dissipate or fall off before I pick at them. I need to do it for three weeks.

I have a huge purple bruise on my left thigh and a smaller one on my wrist. It only hurts a little when I sit.

Tuesday, December 19, 2017

Six good things during the past week

Candle lighting at the JCA
Holiday parties and a writing award provided an uptick after a sad week.

1. Went to the Jewish Community of Amherst for a Hanukkah party Wednesday with candle-lighting, latkes and pizza, having seen the announcement in the entryway where I'm doing my Literacy Project volunteering now. It's also where I sent my children way back when. It's much nicer now with the addition to their facilities. I didn't think I would know anyone and so was happy to bump into a former colleague who sends her daughters there. We sat together and made plans to return for one of the rabbi's Wednesday lunch and learn sessions. I'm not exactly sure why, but I was a little depressed and felt better after seeing all the lit menorahs, singing songs, eating latkes and talking to my friend and her daughters.

2. The Dog Writers Association of America gave me its Inspirational Feature award for my story in the American Kennel Club's Family Dog Magazine. It was about how Maddie and I each helped the other heal after our separate near-death experiences. It came with a $300 award. $150 for Maddie and the other half for me?

3. After tennis Friday, I went to a fun ladies’ lunch. I have been trying to remember to put everything in my phone and on paper. I put in my phone from 12 to 2, figuring that Nancy wanted time after tennis to get ready. I bought orange juice and went to Starbucks for badly needed coffee, for I had spilled most of it after putting it on top of my icy car roof in the morning. When I checked my email for directions, I saw that it was really at 11, not noon, so I raced over there. Luckily they were still eating, and there was plenty left. I guess being off by an hour is not as bad as missing my college reunion, for which I was off by a week. (Question: Did I subliminally not want to go? Who knows…)

4. Book club holiday party Friday night. None of us finished A Gentleman in Moscow. We liked the writing and many of the author’s observations about life, but we said we kept waiting for something happen. Avid reader friends who finished it said it was worth it. So we’re going to finish up for next time while also reading A Visit from the Goon Squad. The food was delish, the company delightful. We had a Yankee Swap. Love my book group friends but not so much Yankee Swaps.  (#FirstWorldProblem) Stayed up too late.

5. Saturday, dragged myself to yoga. I don’t drink very much, and after two glasses of wine I felt a little hung over. Saturday night, fun Christmas party at Marianne and Karen’s. So much good food an such a friendly crowd.

Menorah in Riverdale
6. Sunday, packed up for trip to family Hanukkah party in the Bronx. Headed out a little bleary-eyed but stopped on the way at Ben’s for visit with Ben, Joe and Callen. (Nell was away on a girls’ weekend.) In a short time, Callen had turned into a little person! Amazing how that happens.

On my way out, I found a florist where I got pretty flowers to take to my cousin’s. It was good to be with family and extended family. We had more latkes and delectable New York deli sandwiches. I always go for the corned beef. REAL corned beef. This is the second year after Jennifer's suicide. Last year, the first year without her, was the most difficult. I spent some time talking to her twin brother on Sunday. He says that without Buddhism, he doesn’t know how he could have survived. I told him that at the JCA, I met some people who called themselves JewBus. I looked up the definition and found this interesting story.

Stayed over at Residence Inn in Yonkers. On the way back, I was so tired I had to stop twice. Often that's the way it is when you're on the go. The expectation on the way there keeps you alert. On the way back, Starbucks (good) at stop 1 in Woodbridge, Conn., and Subway (kinda yucky) at stop 2 kept me awake.

Didn't get any exercise except for getting in and out of the car. Got back pretty late and thought of a brief run but it was dark. And I thought of Zoe getting hit in the dark. So I went swimming. It's my least favorite activity. Though some who have cut back on running say they get the same high from swimming, I don't feel it, probably because I don't go far enough. For some reason, the last two times I have stopped at 24 laps, the last two doing water jogging. It is boring, not at all like running outdoors when you can soak up the scenery with your eyes rather than getting water-logged in a pool.

A few times in the past I did get some endorphins from doing laps, but last night I was distracted by leaky goggles that I had to keep fixing. I might invest in a pair of prescription goggles. Despite the drawbacks, it did get the schpilkes out. 

Monday, December 11, 2017

A day of sadness and celebration

When I wrote about the friend who was killed in a car accident, her name had not yet been released, but since then the local news outlets reported that her name was Zoe Rosenthal, a much loved teacher at The Literacy Project. The Daily Hampshire Gazette had this front page story  giving more details. The story on Masslive, my old employer, said the accident is under investigation.

If you read the comments, which may or may not be trusted, there seems to be a video showing that Zoe waited patiently to cross the street with her dog and a man with allegedly bad eyesight came around a corner so fast that he sent her flying. It's in general a bad idea to read the comments. But I was curious so I did it, and a couple of people seemed to know what they were talking about.

On Saturday, her daughters arranged a celebration of her life. It was snowy and not a great driving day. But I had told a student who lives in Sunderland, who didn't feel comfortable driving all the way to Holyoke, that I would go over the notch to pick her up at Atkins. Reading somewhere that it was a potluck, I brought a bag of clementines. Zoe liked fruit. But when we got to The Waterfront Tavern in Holyoke, we saw that it was going to be a big catered party with lots and lots of food for friends and family. As I walked up to the food, I saw two little boys playing catch with my clementines. I told their father I was glad they were being put to good use.

Desserts from Saturday
Only knowing Zoe from the classroom, I had no idea how many lives she had touched. A group came from New York, including an aunt and a woman who told me she was Zoe's second mother. She gave me a rose from her bouquet. When it was her turn to stand up and speak about Zoe, she said that she had practically raised her from the age of 13. She broke down to such an extent that two people held her while she sobbed. Upbeat music played. Someone said Zoe was dancing in heaven. A slideshow showed her smiling face in various locales, on the beach, playing with her granddaughter, surrounded by friends and family.

You might say that such an event included laughter and tears. But the laughter part was subdued. There still seemed to be a lot of shock over what happened, that Zoe had gotten her dog Chester to help her heal from a previous accident and from the death of her best friend his daughter, killed in a motorcycle accident by a driver high on heroin, and that she had recently bought a house in Holyoke, and probably wouldn't have been at Lyman and Canal Streets if the purchase, which I remember from last year, hadn't come through.

I was a volunteer in her class at in Northampton for two years but switched this year to the Amherst location because the parking problem in the Gothic Street lot had become untenable. It was hard enough my previous years as a volunteer to get over the Coolidge bridge without hassle and then find a spot in the lot. More than once I had to park on the street, clamber over a snowbank, and run out to feed the meter because the allowed time didn't cover the whole time of the class, whereas in the lot it did. I had thought of switching before because the Amherst location, at the Jewish Community of Amherst, had free parking. But I wanted to stay with the same class.

Then last spring the Northampton IT department took the whole back row. And I simply could not park. I would drive around sometimes for 10 minutes until I found a spot, then come into the class both apologetic and apoplectic. So when the spot in Amherst opened up, I felt like I had to take it. I wrote Zoe first just so she would know. I said I hoped I could get together with her and Carole, the other volunteer. We had planned a lunch in the spring but it didn't work out. I said I hoped the three of us could still get together. She didn't get back to me. I was afraid she was annoyed and kept meaning to stop in but hadn't done it yet.

When some 20 of us gathered in Zoe's classroom a couple of days after her death, and when Carole said one of the best things was that she and the volunteers were a team, I started bawling. "I feel useful in Amherst, but I feel like I left the team," I said, or something to that extent. I wished I had had more time with her. We had a lot in common: both divorced with daughters, both having gone to high school in New York, and both with a two-year-old granddaughter.

By the way, Zoe's class is a beginner level and the one I'm in now is the next level up, intended for those who want to pass the HISET test or who for reasons of their own want to do higher level work.

Certainly, rationally I knew that I didn't leave the team. I'm still a volunteer. The other volunteers with whom I shared my concerns said that Zoe wasn't like that, she wouldn't have held it against, me, and of course she understood. 

Yesterday by coincidence I was at the JCA for a talk and reading from her new book by Rabbi Sheila Weinstein. She was the rabbi when I attended services and sent my kids to Sunday school there. When, during the Q and A session, the discussion turned to Purim, I used the opportunity to get up and say some of what was weighing me down.

I don't like speaking in front of a crowd, but I said that I remembered Sheila dressing up as a clown for Purim, bringing my costumed kids and getting them graggers with which to make noise at any mention of the evil Haman. I said that the kids lost some interest when they realized she would be leading a reading of the whole Megillah, the story of Esther, which has come to mean a very long tale.

Tears filling my eyes, I said what had happened and asked (rhetorically) why Judaism doesn't offer up the vision of a deceased person dancing in heaven, and what can you do with your grief in a situation like this, and then I told the part about the parking and the guilt.

She said that (of course) I didn't do anything wrong and that I had reason to be sad and that I would just need to sit with it. The woman sitting next to me gently rubbed my back.

Afterwards, when milling around, I bumped into several people I knew, including one from a baby play group (Ben's) and one who was related to good friends of my parents. A man who came over to give me a hug said that as a fellow native New Yorker, he got the thing about the parking. Getting a good place is an point of pride, if not a religion.

"Once you tried three times without success, that was it," he said about the parking problems that drove me out of Northampton.

That made more sense to me than the voice rattling around in my head did.

Tuesday, December 5, 2017

Fun time at the Hot Chocolate Run

The Hot Chocolate Run for Safe Passage in Northampton is such a fun and festive event that I'm not sure why it wasn't on my radar all those years that I was running Saint Patrick's and the Talking Turkey.

I did it last year for the first time, when tennis friends organized a team to support our team member, Marianne Winters, the executive director of the Northampton non-profit supporting women and children affected by domestic violence.

Thinking it was "only" a 5K, I thought it was no big deal. The hills in and around Smith College, however, made it harder than unpleasant surprise.

Back in the day when I was regularly doing five- to six-milers up and down hills in South Hadley, and longer on weekends, getting up to a half marathon, it would have been no biggie. But I've been doing shorter distances – a place holder in case I decide to really get back into it. I miss those endorphins from the longer, more regular runs.
With Carol Constant at Hot Chocolate Run

Last year when I was struggling to get up a hill, I asked a bystander, "Am I running or walking?"

I was glad to hear her say I was running. But I was so bent over that she asked if I needed medical attention. I didn't, but I did have to lean against a tree to straighten out.

My goals this year were to (1) finish feeling good and standing up straight and (2) to not finish last. I had been there done that in this year's Saint Patrick's Road Race, a distinction that I wrote about in Women's Running. (Everything is material.)

For the past few months, I've done small intervals, speeding up to the best of my ability between trees and other markers, a couple of times a week at best. Mostly I did three miles, though I did a few four-milers. I also added hills, changing courses from just going the lakes at Mount Holyoke to going around the neighborhood. Just the tiniest whiff of those endorphins makes me want to keep at it, though at this point I'm more in the groove of tennis. It suits my capabilities more now.

By last week I felt OK on the hills and felt better about getting a little faster.

All the energy on the day of the event – Sunday – helped me get an extra bounce in my step. The costumes and music added to the excitement. I felt better all around, though I have to say it is a challenge to not totally be able to feel your feet. This is due to the neuropathy that never went away after my chemotherapy eight years ago. I told myself to try to feel the ground instead of thinking about my feet.

A father told his son not to compare himself to anyone else – "You're only racing against yourself" – and I picked up on that bit of wisdom and took it for myself. Of course I wasn't running for a time as in the past...just running to have fun and be respectable. With that definition of success, it was a win.

Some 6,000 people ran, and the event raised $615,000.

Back home, Maddie and I walked around both lakes with my neighbor. Like all the excitement had at done at the race, the conversation carried me. Plus, after I had gotten exercise, I felt like it was only fair for the dog to get it too.

What with coming and going and walking and running, by the end of the day I had done more than 9 miles. I was more wired than tired that night. But the next day, yesterday, was a different story.

Friday, December 1, 2017

Mourning the loss of a friend

Map of where our friend was killed
This was a sad day.

A group of us gathered to honor and remember the 52-year-old woman who died Wednesday after being hit by a car on Monday. She had been walking her dog at the corner of Canal and Lyman streets in Holyoke around 6:30 p.m. when a 63-year-old man hit her.

It is unclear if her name will be released. So I am not even going to say who the group of people was or where we met. In that way it is hard to write about. But I can say that she was a wonderful caring person with so much to give. We got food from a restaurant that she liked and shared our thoughts and feelings.

We had a lot in common, so that in addition to having a professional relationship, we had a personal one.

I felt that in a certain way I had let her down. People in the know said, not so. But as I said to another person at our gathering, when somebody dies, it is natural to glom onto one particular thing that is making you cry, where in reality it is the passing in general. I told this person that when my mother died right after Thanksgiving and I had left New York to be home with my children instead of staying with her, I kept dwelling on how I should have stayed. I only managed to let it go when a cousin said that I had given her the gift of doing what she asked me to do, which was to go back home.

Today a member of our group led us in a meditation. She said it is OK to feel how you feel, whatever that is. I am struggling with a recurrent image of our friend being hit, probably hit on the head, because the first reports were of head injuries suffered. I imagine you just need to let that kind of thing run its course and think of how she lived, not how she died. It is corny to say, but you could feel the love in that room today.

In reading the version of the accident reported on, my former place of employment, I'm reminded of how stupid some of the comments can be, such as this one posted by Iowa Cowboy:  "This is why the RMV needs to crack down on older drivers. I’d like to see a law passed that would require any driver over 55 to have a DOT medical exam and carry a DOT medical card to operate any vehicle."

Tonight, I watched Joe announce the UMASS/UCONN hockey game  It was a good game, with UMASS coming out ahead 4-2 for the team's third straight win.

While actually the words should be "listen to" him announce, watching is also accurate; while of course watching the game, I sit behind the announcers' booth, thereby also watching the back of his head. While some proud parents might be taking videos of their sons skating, I take videos of such feats as Joe going out on the ice between periods to announce and retrieve the award-winning puck in the chuck a puck. It's the little things. What can you say.

When staff jettisoned UMASS T-shirts into the crowd, an overenthusiastic fan in front of me jumped up and elbowed me in the forehead. My glasses flew into my lap. Tears filled my eyes.


Fan, unapologetically: "Oh, sorry."

Putting my water bottle on my forehead, I had to wonder if my reaction had to do partially with the man who hit our friend.

Afterwards I went into the bathroom to check out my face and observed that Mr. Fan-atic's elbow had broken my skin. My head aches a little, but not as much as my heart does.

Monday, November 27, 2017

Peripatetic, with ear pain

At The Bean in Chicago with Ohioans
After the Mohs surgery on my ear , I had it in my mind that the next day I was going to drive to Needham, sleep over at Margaret's, and fly from nearby Logan Airport to Chicago early the next morning for the American Association of Journalists and Authors conference on non-fiction freelancing and content marketing. 

But when the anesthesia wore off, I was in so much pain that I had to take heavy-duty pain meds and therefore could barely wake up. A friend said he would drive me to the airport early Friday (a week ago) for my 8 a.m. flight. I was so zonked that I don't even know what time I put on my alarm, but it wasn't what we agreed on. I called him and said, "You sound like you're in a tunnel." 

"That's because I'm on my way to your house," he said.

You never saw me move so fast.

I would have to power through the conference. It wasn't good timing. I hadn't expected so much pain.

But I made it through the one-day event with help from oxycodone every four hours. The goal was to connect with new editors and by extension get new stories to write; I think it was a success but only time will tell.

I also wanted to learn more about content marketing. For some journalists like myself, it's hard to make the leap. Here is one definition: "It's a type of marketing that involves the creation and sharing of online material (such as videos, blogs, and social media posts) that does not explicitly promote a brand but is intended to stimulate interest in its products or services."

After dinner with Mieke in Chicago
As a bonus, I had dinner with an old friend from the newspaper (actually a cool young friend) and made friends at the hotel, spending some time getting to know a friendly couple from Ohio. I had expected to go with a friend and had therefore booked a couple of extra days. But it didn't work out, so it was fun wandering around Chicago one day with my new friends. I also took the fascinating Chicago Architecture Foundation River Cruise  on its last day of the season and went back to run along the river at twilight.

I flew back to Boston Tuesday, took an Uber to Margaret's, had a nice dinner, went to bed, and got up and got a ride to Dana-Farber for the light therapy on my blood (ECP) on Wednesday. Katie, having flown into Boston, got herself to Dana-Farber. I scheduled a ride to pick me up at 5 and take us back to South Hadley.

Katie got there earlier than expected, so I called the dispatcher at 4 to say I was done and to ask if a driver was available earlier. She answered in the negative. So we went down at 5. At around 5:15 when he wasn't there, I called the dispatcher again. She said that he was in front and would call me. 5:25, still no driver. 

I don't exactly remember how we connected at around 5:30. He said he had been there since 3:30 and had been calling and calling. Katie looked at the number. It turned out he had transposed two of the digits. It remained a mystery why the dispatcher hadn't notified us that he was available and why she hadn't checked in with him as to what number he was calling. 

Centerpiece by Katie
That left little time to prepare for Thanksgiving, which was to be at my house the next afternoon. But family and friends, along with inspiration from my mother, helped get it done. I had forgotten to get a centerpiece. Katie said that she would be like her grandma and go out to the yard and gather the makings...pine cones, branches, leaves, etc. She went for a run and came back with a few extra things. During my dog walk, I got a few branches for the finishing touch. 

From start to finish, it was a success. 

As I do every Thanksgiving, I wrote my donor Denise, and thanked her for my life.

Thursday, November 16, 2017

Ear today, pain tomorrow

Glad that the procedure is over 
Yesterday I had another Mohs surgery, this one to remove a basal cell carcinoma from an inside part of my ear. It is the area above your earlobe, the little bowl that your finger might inadvertently scratch. I wasn't sure what it was called until the nurse  at Brigham and Women's Faulkner Hospital said it was the concha.

I was surprised to get a skin cancer there, but they said it is not unusual. I've had so many Mohs that I lost track. This one made me more worried, due to the anticipated pain and weirdness of having a needle stuck into an area with so little skin.

The resident who helped on my intake said that Dr. Schmults has her ways of relaxing patients.  He looked around the exam room and waved his hand and said "this is part of it." He was talking about the classical music playing. It was indeed beautiful and relaxing.

She started out by zapping some pre-cancerous thingies on my neck and hands. She also said to apply Effudex to a spot on my nose, and to do it for a month. It's going to turn my nose red, so maybe I can entertain some children.

When the time came,  the doctor covered my head with a sterile cloth.  Her application of the lidocaine was nothing to have worried about. She did little staccoto pricks that I could barely feel. I heard scraping and felt the pressure but no pain. We even chatted while she worked, and we came up with a potential story idea. She took my email and said she would send me info on a doctor who might make a good story.  She laughed that we were multi-tasking.

Then I waited about 45 minutes while she checked the tissue under a microscope to see if all the margins were clear. Knowing about this waiting period, I had brought two New Yorkers. But the nurse and I talked almost the whole time.

It turns out there was a little bit still left. So this time the nurse numbed me up and the doctor went in and chipped away some cartilage. It took a long time for the nurse to pack the ear up. The good news is that I got a steristrip instead of stitches, so I won't have to take much time up for tennis. In a few days the big bandage can be removed.

Dr. Schmults gave me a prescription for Tyelonol #3 with codeine.  With a craving for a good reuben sandwich, I asked the friend who drove me if he wanted to go to Zaftigs Delicatessen. I also wanted to see my old block, nearby on Babcock Street. We had some good times in that Victorian house, notably group dinners on an old ping pong table in the dining room, running with house friends the short distance to the Charles River path and then running some more, going to Red Sox games, sunbathing on the roof, making new friends, having long discussions.

Old homestead where I lived when in grad school
For some reason when I give a plant a haircut my mind often turns to one of them, He had a big sunny room and many plants that he seemed to be always cutting back. He was quite the ladies' man. Sadly, when I bumped into one of those old roommates in the strangest place – the Kraft Family Blood Door Center – I learned that our friend had died.

My ear didn't immediately hurt. But when the numbing medicine wore off, it was a different story. It felt like a fiery rod was piercing into my brain. I took the Tylenol/Codeine and 10 mgs of oxycodone. The pain resolved, but over a period of a few hours, my skin began to itch. I looked it up and saw that itchy skin can be a side effect of codeine. So I took a Benadryl. The itch subsided, but I tossed and turned all night.

This morning, it took so long to wake up that it was afternoon before I could even function.

Friday, November 10, 2017

Look Ma, two hands. (Well, actually arms).

Two arms are better than one at ECP at Dana-Farber
The new machines for extracorporeal photopheresis, or ECP, at the Kraft Family Blood Donor Center at Dana-Farber are faster than the ones used when I started getting my blood sunburned two years ago.

They are even faster, by almost an hour, if you use two arms instead of one. That's a substantial decrease in what is normally a three-hour procedure.

The nurses have broached the topic of going to two arms but I always chickened out, worried about the pain  or the loss of one free arm to use the computer or try to read a book. Yesterday, though, my nurse, Marc, sweet-talked me into it so fast that before I knew it, I had a needle in both arms. He said we could just try it and if I didn't like it we could always go back to one.

He said everyone uses two arms.

"Larry, do you use two arms?" I asked my fellow ECP-er sitting in the chair diagonally across from me. Turns out he only uses one, but Marc wasn't deterred. With a big smile and joking about not trusting the nurse taking care of the patient on my left, he got the first needle in on the left arm so smoothly I hardly felt it. While I was complimenting him, he put another needle in my right arm. And I had two arms connected before I knew it. I had taken an oxycodone right before I came in, so that probably helped. It also, as per usual, made me more chatty.

"Marry me," I said to Marc.

He had said he would fix it so that I could use one arm, but that didn't really happen. The time went by quickly anyway, what with chatting with the nurses and talking to the two fellows who stopped by.

I had had a good ride in, following another good one two weeks before.

My only issue with Angel from Serene Transportation on Wednesday was that when I asked him to turn the radio down, he did it such a smidgen that I hardly noticed. (Like maybe a kid would have done.) It was hard to hear when I had to make a call. Then he took the sound out of the back speaker and said he realized the problem was with the speaker nearest him not working. So maybe while I thought he was messing with me, he was just trying to hear the radio on his end.

I brought him a couple of snacks for the way home. He said it had been a long day of driving.His rear end was killing him. My arms were hurting so I know how he felt. I thought of taking another oxy but instead took the edge off with Tylenol and a bowl of chocolate and vanilla ice cream.

The previous week, I had the Russian driver Sergei from the bad trip that caused me to miss my appointment. It wasn't his fault – the scheduler had screwed me by putting in another patient who lived way out of the way – and I could tell how bad he felt.

Two weeks later I was coming down the sidewalk after a quick walk when I noticed a car in my driveway. It was 15 minutes before my scheduled pick-up time. But it was Sergei, who said he didn't want anything to go wrong this time. Nothing went wrong. What a relief! (Amazing how something as outwardly easy as a ride to Boston could seem so fraught with peril.)

Today I played my first Friday morning round robin of the year at the Enfield Tennis Club. You do three rounds with different partners, keeping your own score, for about 45 minutes each round. At the end, they add up points. The one with the highest number gets the prize: a can of tennis balls.

I won 5-3 with one partner, 5-3 with the next, and then tied 4-4 when we ran out of time. It was relaxing fun tennis with talk in between games about things such as the first mice in someone's basement (a mouse now in mouse heaven).

My slice light was on. (Thank you George.) I got a lot of balls at the net, playing with two different people who set me up nicely. I told my first partner, a longtime tennis friend, that if this was hockey, the announcer would credit her with the assist after I got a good angle at the net. (Channeling my father.) Using my poor imitation of Joe's announcer voice, I demonstrated what that would sound like.

At one point I thought I might get the can of balls, but it was not to be.

Afterwards, I thought about how at one time, I wasn't strong or steady enough to play in the Friday round robin. It is more competitive than on Wednesday, and I heard back then that only one person wanted to play with me. If this resembles playground talk, it's because at any level, people want to be on the winning team. This was hurtful but I saw their point. (Thank you my friend with whom I won at The Districts while playing with pneumonia for being such a good cheerleader. That part of my Lives essay is near the end.)

Obviously I don't really care about the balls. I'm just happy to feel good out there.

Sunday, November 5, 2017

Thinking about the things that hit me

View from the Hudson River bike and jogging path, uptown
It hit me that a week ago I was jogging on the path along the Hudson River and thinking what a beautiful place it is. I jogged (slowly as per usual these days) from my friend's house on 110th Street and Riverside down to the 79th Street Boat Basin and paused to look down at the boats and up at the Boat Basin Cafe, thinking it would be a great place to go some day. I stopped to stretch and look around.

It was about four miles of feeling so-so. I was thinking about the upcoming Hot Chocolate Run to Benefit Safe Passage and about how last year when I said to myself that it was "just" a 5-K, I didn't know it would be hilly. And about how when I finished I was so bent over that someone asked if I needed medical attention. And how as you get older, maybe the definition of a good run changes from feeling fabulous to other things: enjoying the scenery, accomplishing or even overshooting your goal (I had meant to do just three miles), getting at least part of the good feeling that you used to get, and being in decent enough shape to run with tennis friends to support the mission of Safe Passage and the hard work of its director, our teammate Marianne Winters. I was thinking that it was good to be in New York on a beautiful day and that it was good to be looking forward to a dinner in the neighborhood with Katie.

79th Street Boat Basin
It was the northern part of the path where the Isis-inspired truck attack took place. When I'm in New York I often run on the southern end near where this happened. It hits you when you can see the whole deadly scene clearly in your mind. And when you think of how New Yorkers, while mourning, went about their business, and how the Halloween parade that went on as usual "was a beautiful example of that failed attempt” to sow fear, as Gov. Andrew M. Cuomo, who marched with Mayor Bill de Blasio, said at a news conference on Wednesday. The governor’s remarks were a reminder of how terror attacks can elevate otherwise ordinary events into symbols of resilience, the Times reporter wrote.

I can relate to that way of being, and that is why I still always say I'm a New Yorker even though I haven't lived there for, well, for quite a while.

Also in the week's news, it hit me that because journalists at two small New York news outlets decided to unionize, their billionaire owner shut the outlets down out of spite. He was objecting to "a few dozen modestly paid employees who collectively bargain for better working conditions."

According to the story: "And, as a final thumb in the eye, he initially pulled the entire site’s archives down (they are now back up), so his newly unemployed workers lost access to their published work. Then, presumably, he went to bed in his $29 million apartment."

This sentence especially hit me: "The careers of most journalists feature constant uncertainty and heartbreak, interspersed with periods of life-affirming work that you hope make it all worthwhile."

Some people ask why I am still doing it. Some of us who lost our jobs and who stayed in the field say, "because we don't know how to do anything else."

The life of a freelancer amplifies the frustration because unless you have an "anchor client" (which I hope to someday find), you are always looking for your next job. Like reporters who I imagine do the same in many newsrooms, I complained bitterly (my father's words) about this and that, about my editor's instructions to go out and "find people who..." (fill in the blank with a variety of person-on-the street or in-the-mall questions), about the same event that had to be covered with a fresh perspective every year, about not being given enough space, about deadline pressure and story quotas, and so on.

But I would do it again. And am still going after those good stories that you have to dig out as a freelancer.

I also got literally hit by the driver who sideswiped me when I was driving to The Literacy Project in Amherst on Tuesday. It was a perfect way (not) to come down from my perfect New York weekend with Katie. I thought it was going to be a hit and run because the other driver kept going. A Good Samaritan saw what had happened, three police cars came, the other driver came back, my witness supported my story, and nobody got hurt, etc., but it is a real pain in the rear to deal with.

The insurance company didn't want to pay for my rental until my car was in the shop. So yesterday I drove with no driver's side mirror and did not feel safe at all, especially crossing lanes in the highway. The frame of the mirror, dangling from a wire, banged up against the door.

I emailed the insurance rep and said the magic, and very true, words: I do not feel safe driving this car and I'm afraid of having an accident. He emailed right back to get the rental. Yesterday a lovely woman from Enterprise came to pick me up. We had to go to Fuller Road to fill out the paperwork. Then I came back and now I have the rental and feel safe again. It seemed like a good part of the past few days were taken up going about getting the police report and the estimate and going to the insurance agency.

I thought about how it could have been worse had the other driver strayed just a little further into my lane, and I thought about how I could have been on the part of the bike path where the terrorist attack occurred.

But I'm here, in one piece (more or less).

Wednesday, November 1, 2017

Quick and pitch perfect trip to New York

Spot at 112th Street
I liked the Dear Evan Hansen cast album that Katie played for me, but I didn't totally get it until we saw the Tony-Award-winning show last week. I am as in love as the next person with the soon-to-depart star, Ben Platt. And am grateful once again that my theater scout is up to date on what's great. And that she got the tickets (a teeny bit over market price) for before Platt departs on Nov. 19.

Hilton Als wrote in the New Yorker, "Ben Platt’s characterization of Evan is almost beyond belief, one of those supersonic performances that make you sit up in your chair and wonder if you’re actually hearing and seeing what he’s doing. "

This wonderful show of course will go on without him, with the rest of the cast is staying on. It will be interesting to hear how his replacements do.

Outside the Music Box Theater
Katie and I had arranged to meet in New York on Thursday, the day of the show, with Katie flying in from Minneapolis. Due to the pouring rain, I dismissed the idea of driving part way and taking a train from Fairfield. It seemed easier to drive straight in despite whatever road conditions I might encounter; lugging around my stuff and switching trains and going to and from a station seemed too much. (Yes, for some reason even for two days I end up with too much stuff.)

Driving in the rain wasn't fun, but right around when I entered New York, the skies started to clear. We were staying at a friend's beautiful Upper West Side apartment, so I came down the West Side highway instead of how I usually come in, from the east. As I was approaching, Katie called from our agreed meeting place, Tom's Restaurant of Seinfeld fame. I made one pass around the block, and, lo and behold, a car pulled out in front of me, opening a beautiful spot that was "good for tomorrow" on 112th Street between Riverside and Broadway. It was a little more than two blocks from where we were staying.

Katie, Serena and me on subway
Free parking in New York. What more do I need to say? My own parking karma gets me a lot of good spaces, but I also think my father opens them up for me. So I looked above and said, "Thank you, Dad."

I walked about a block and met Katie at the counter at Tom's. She gave me a present: a package of tissues for the tears I was sure to shed at the evening's performance.

Last row seats didn't matter
We had a few hours. Our cousin Serena came over with her beautiful baby. Then we got on the subway and got off at different stops, Serena to go to her apartment and Katie and I to our pre-theater standby, Joe Allen's. I have to admit that all the times going there, I didn't notice that the posters on the walls were from Broadway flops, hence, the Joe Allen infamous flop wall. Katie pointed this out.

Over at the Music Box Theater, you could feel the anticipation coming from the people on the cancellation line and from those going in. We had back row seats, but it didn't matter. The audience applauded like crazy when Platt came onto the stage. It didn't take long for me to understand what the fuss has been about. I was as entranced as the woman next to us who kept saying, "What a beautiful voice."

That night we had musical-induced insomnia, staying up late eating cheesecake from Junior's and looking up all things Ben Platt...including one of the Pitch Perfect movies with only Ben Platt scenes (Platt Perfect).

We went back to South Hadley on Saturday via Fairfield, where we stopped for bagels and a nice visit with Nell, Ben and Callen.  It was hard to give up that parking space, but we felt gratified that we were making someone else feel good because of the smile on the face of the lucky driver who asked if we were going out.

On the way back we listened to the cast album. I also bought it so I could hear it on my phone. You have to be vigilant about overload if you listen to the same thing over and over. But I'm not there yet.

Tuesday, October 17, 2017

After a bad day in Boston, a better one

Talking up a storm at home away from home
After the dismal day with the mixed up transportation last Wednesday, things looked up the next day. Determined not to spend too much money (by taking an Uber or a cab) to get back down to Dana-Farber from Newton for the UV light treatment, or ECP, I took the T to Longwood and walked about 10 minutes.

It was easy peasy and actually fun to be at 9 a.m. instead of my usual 4 p.m. with a whole new crowd of graft vs. hosters. It was a full house. When a nurse called out the patients' names to another nurse to show that all beds were accounted for (six I think), it sounded like names in a line of school kids.

The woman next to me didn't stay long. They couldn't get the needle to go in deep enough for the treatment. She was cheerful enough, though. They did get enough for a blood count. It made a big splat on the pillow. She reminded me of me because before she left, she wanted to take a picture of the splat to show her daughter.

She told me she comes once a month and has been at it for seven years. She started like I did, twice a week, and reduced gradually from there. So comparatively, my two years is not that long. It's hard to imagine continuing for that many years. But a doctor told me when I started that many patients are so happy with the results that they prefer to come back for touchups rather than going back to having tight or itchy skin, common manifestations of graft vs. host disease of the skin, one of the side effects of bone marrow transplantation.

To recap: Mine started with hardened skin (abdomen like a bowling ball) and indentations that look little pockmarks, ripples or dimples on thighs and stomach. Progress is hard to quantify because you don't have a number or a specific marker on which to base change (or lack of it.)

My skin has definitely gotten softer, which is good because if the condition is left untreated, the skin can harden even more in a dangerous way that inhibits motion. But it is still not smooth. And a hard area like a low-slung belt gives the sensation of a band under my abdomen. It could be worse because a nurse told me that for some patients, the "band" is higher up and they feel like they can't breathe. Still I don't like the way it pushes my stomach out.

There are two parts: how I feel and how I look.

The first part is the most important. I feel like I am moving much more freely and have better flexibility and balance. My hands aren't puffy anymore, and my skin overall is less constricted. It shows in yoga, tennis and walking. Our coach, George, asks what they are putting in my veins.

On the negative side, the feeling of a band around my stomach can get really uncomfortable. My skin on certain areas still has the dimpled look, and not on my face, where it might be cute. You wouldn't know it unless I pulled down my pants or lifted up my shirt to show you. (I showed a friend when we shared a dressing room and she could have done without it.) Last summer when I visited a friend in Florida and put on a bathing suit, she asked, "What happened to your legs?" Apparently it might never totally smooth out again, but it is supposed to gradually get better, or else I wouldn't keep at it.

I told my nurse I might not take my oxycodone because I wanted to read. She said why not just do it. I did and was glad because she couldn't get the needle all the way in on the first try. You can tell when it's not a "good" stick; it's a deeper pain and lasts longer than the discomfort that usually wanes when it goes into the vein as it's supposed to.

She got it in on the second try. Having taken the oxycodone, I read the same pages of my book, Anna Quindlen's Miller's Valley, over and over. The "oxy" makes you more talkative. And leads to a goofy look that you can see in the photo.

The rescheduled ride back home worked out, with the driver actually showing up on time and not being too strange, although she did talk on the phone most of the way.

Back home, I lay down on the couch and couldn't decide if I wanted to wake up or go to sleep. I dozed for a while. Needing to make an appointment for the Mohs to remove the basal cell in my outer ear, I looked at my tennis schedule to see where I could schedule it to have to get the least amount of subs. I asked the dermatology scheduler how they do it. She said the doctor would explain.

It's not usually productive to look things up. But I looked up skin cancer of the outer ear to try to get an idea. Some photos came up that made me say eeeeeeuuuuw. I was sorry that I looked. It's hard to imagine because the area has so little skin. Apparently the doctor scrapes it one layer at a time.

I was happy when a friend said she would take me. So at least I won't have to worry about the transportation.

"I hope I do a better job than the others!" she wrote in an email.

No doubt she will.

We are talking about doing a little shopping afterwards. It is fun to have to tack something fun onto a potential ordeal. Or the idea of it, anyway. If they do just one pass it might work out.

On the other hand it might be like when I was preparing for my colonoscopy and I called my mother and said I felt fine and might go out to the store.

"Just you wait," she said, or something like that.

Obviously my shopping trip didn't materialize.

But you never know how things will turn out.

Wednesday, October 11, 2017

Transportation screwup and another skin cancer

In the matter of getting to Dana-Farber, just having a nice driver doesn't guarantee a good trip.

Today's is up there in bad trip land. Because I got to Boston but didn't get the procedure. That's because we were almost an hour late.

My mistake I guess for being accommodating to the vendor. Due to past rides with crazy people, my paperwork with MART says I'm supposed to ride alone.

The day started out great with tennis at the Canoe Club. We had two courts and mixed in drills with snacks, stories and playing...our camp for grownups continues until we're too cold to stand it. At our last outing last year, we were bundled up in coats.

The driver arrived at 2:15 for my 4 p.m. appointment, a little late (I allow two hours) but no biggie. The first sign of trouble was when he said the other passenger to be picked up lived in Springfield. I said we would not make it to Dana-Farber by 4. He said he had looked at his GPS and was certain that we would.


We got to the apartment complex around 2:45. He couldn't find the exact apartment. Got on the phone and talked to the woman and drove around for another 10 or so. I entered the location on my phone and saw that we would get there at 4:50. Called the Kraft Blood Donor Center. They  said what I already knew, which was that I would not get there on time for the light therapy on my skin, aka ECP. They could take me tomorrow at 9 a.m.

When I saw we weren't going to make it, I wanted to say to just turn around. But I couldn't do it because the other person had to make an appointment in Boston.

I called my sister and asked if I could stay over. She said they would be around and of course the answer was yes. (I lucked into a good dinner, at least.) Called the owner of the company and asked if the driver could take me to my sister's instead of all the way into Boston for an appointment that I wasn't going to have. She said they can't take me anywhere except an address listed on my PT-1 forms, which are like a prescription for my trips. I said OK, then take me to 850 Boylston St., my dermatologist's office, which was on the way to Boston so the other patient could still get to her appointment but closer to Newton and therefore easier for me.

This is like trying to get an Uber driver to go to a different address, only worse.

She said I had to call MART. So I called the customer service line and waited for a long time before anyone picked up. As per usual.  Stated the problem. Filed a complaint, said it wasn't the driver's fault but the owner should know how to read a map and know that a detour to Springfield would not leave enough time to get me to my appointment.

I asked about changing the location of my drop off. She said this could not be done. I would have to cancel the current trip in the car that was pointlessly bringing me to Dana-Farber and book new trips. But she could not do that. I would have to call the reservation number. Wouldn't you know that I was basically crying at this point. Nobody died, but at the moment that doesn't lessen the frustration.

Oh and during that same car ride I got the results of biopsies in my ear and on my thumb.

The one on the thumb is squamous cell (in situ, or on the skin) and can be treated with effudex, a chemotherapy cream. The one in my ear is a basal cell. I will need another Mohs on it. I don't see how they take it out by layer because there is hardly any skin there.

Call reservation number. Wait on hold. Finally get an answer. The only place the driver can take me is  to Dana-Farer. I can wait there until my planned pickup time (7 p.m.) or get myself to my sister's. If I go to my sister's and cancel that ride, I will have to book a new ride home for tomorrow. I say to book the new ride home at noon tomorrow. The woman says that without a three day window, they cannot guarantee a ride. I ask if they were just going to leave me there. She says that in all likelihood I will get the ride. But she has to explain. Just in case. Just in case what? They leave me there?

The driver leaves me off at Dana-Farber. He says he is very sorry. I say it's not his fault.

I go up to the eighth floor and page Melissa. I have no pills for the night or the morning. The last time I skipped gabapentin I had severe withdrawal symptoms. Melissa says she can call in the RX to the Newton Highlands CVS. he arranges for me to get a voucher for a cab. It was $27 so I'm glad I didn't have to pay.

I don't know what I would do without her. I was going to say she is a saint except that Jews don't believe in saints. But you get the idea.

I get a message saying that I do have a ride home tomorrow.

In the morning I'm going to take the T back down to Dana-Farber.

I can't believe I even wrote this because I am so drained.

The wear and tear.

In the middle of dinner I heard a text. It was an image of Katie turned into a cat. She must have gotten what the kids used to call ESP-N. Maybe she knew that I was upset.

I played it like a gazillion times. It made me smile.