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.

WRONG.

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.

Sunday, October 1, 2017

Don't count your chicken's before they're hatched

I think I might have jinxed myself the other day when, after the driver taking me to Boston checked in, I wrote on Facebook, "Encouraged because driver checking in with me about my ride to Boston later today sounded normal and polite. #Settingalowbar."

It wasn't that the driver was rude. It was just that he never came.

He called around 2 p.m., the time when he was supposed to be here to leave for my 4 p.m. appointment, to say that he was sorry but he would be about 15 minutes late because another driver got two flat tires and the boss insisted he drive someone to Holyoke before coming to get me even though it would make him late for me. He told me he hated the late-day shift and hated that the owner of the company made him do this and he hated to be late. He said the owner told him that he would still be able to get me there on time.

I told him not to worry. I have heard this about the car company owners before. They squeeze in more rides than they are able to do without regard for the passengers or, for that matter, for their drivers. Although I could have done without the rant about the shift since I had problems of my own.

In any case, when he didn't show at 2:15 I took my things out to the car in case I ended up driving myself as happened not too long ago. Around 2:25 I called MART, the agency which arranges the rides, and got through to the complaint line. (A miracle.) The operator put me on hold and said she had gotten through to the driver, who said he would be here in about five minutes. She filed a complaint for me and said to follow up if I never took the ride because then the company wouldn't be paid.

Tears of frustration welled up in my eyes. It wasn't just about the drive there at a time when I was tired. It was also about the ride home the next day (after an overnight) when my dermatologist would have zapped or biopsied who knew what. And it was about the time spent arranging three rides (including one from Dana-Farber to Diane and David's that night) and the time that I would need to spend undoing them.

Five minutes passed. I called the Kraft Family Blood Donor Center and said I would be late for my bi-weekly blood treatment, aka ECP,  and asked if it still made sense for me to come. The nurse said that I should come even though I would get a shortened treatment. I got in the car and left.

At 2:45, when I was on my way, the driver called and said he was on Woodbridge Street but couldn't find my house.

I figured that if I stopped and got coffee, I would be even later, so I pushed on through. I did pretty well except for, near the end, missing the left turn towards the Prudential Center and instead taking the Copley Square exit, adding an extra 10 or 15 minutes to the trip.

By the time I got there it was close to five. They always take my blood pressure. I suggested maybe they wouldn't want to. Actually it was quite low, 120-something over 70-something. I guess my body had figured out a way to cope with this situation; I had been there before. My nurse said some treatment was better than no treatment. So inserted the needle and hooked me up. It didn't take long for me to fall asleep.

After an overnight in Newton, I got up early and went to yoga with Diane. It moved a little faster  than most of the classes I take, but I kept up. I confess to looking around at the trim Newton bodies but turned my focus onto myself. (Or tried to.) When walking to the car afterwards, we discussed our problem areas – Diane's knees and my hands and wrists. My left hand especially will not flatten, and my hands and wrists will not bend at the usual 90-degree angle. I have been told this is mostly due to my graft vs. host of the skin,

Diane pointed out that what I can do is amazing: yoga, tennis, running, riding my bike. She reminded me that at one point I couldn't even turn over in bed, let alone walk. I said it had crossed my mind when I took a shower at their house that morning and remembered when I had to struggle to get into the tub and sit on a shower chair so Diane could give me a sponge bath.

Sometimes I forget. I thanked her for the reminder.

Then I changed and went to Chestnut Hill for my dermatology appointment with my friend Dr. Lin. I got stuck in Route 9 traffic and was worried about being late. As it turned out, she was running late, which I should have guessed. I was just falling asleep in the waiting room when I got called.

She zapped pre-cancerous areas on my neck, face, lips and hands. Not pleasant but we chat our way through it, with an occasional yelp escaping from my mouth. She did a biopsy on an area on my thumb (possibly squamous) and also one on the inside of my ear. She thought this one might be basal cell. Probably nothing horrible but if it is cancerous, I will need a Mohs surgery on it. This strikes me as not a great spot.

With my stinging and burning skin, I would have appreciated a ride home. But it was not to be. On my way out I did my usual pass through Waban, where there is a conveniently located Starbucks. First I pulled into a shady spot and fell asleep in the car. Then I went to Starbucks and got an iced coffee, followed by a stop across the street at Barry's Village Deli for half a corned beef sandwich to go.

Due to my training in the news biz, I can eat anything in the car.

It kept me busy and alert until I got home. By then the local anesthesia had worn off on my thumb and in my ear, and the zapped spots were burning. I took a little something and called it a night. The next day I made sure to call MART to say I never got the ride. When it comes to those rides, I will no longer count my chickens before they're hatched.

Monday, September 25, 2017

On the road by bike, car, train and foot

With transplant recipient Mary Turnullo in Danvers
Yesterday I was dragging my feet when I walked down to Tailgate Picnic with Maddie early in the morning.

It was already getting hot, but we had a pleasant time sitting at an outside table. I had coffee and a freshly baked blueberry muffin. Maddie had a little of it and some water. A golden Retriever looking a lot like our friend Theo came over with a mother and son. The dog got up on the bench and sat next to the son. It seemed to be part of their morning routine. The two dogs sniffed around.

I wanted to bring my Sunday New York Times, but it hadn't arrived, so I tucked a New Yorker under my arm. Most in my age range will get a kick out the Shouts and Murmurs, "Our Parents are our Future," written from the point of a millennial having to cope with their doddering parents.

On the short walk home I wondered why I was moving so slowly and having trouble doing even that. I attribute it to the increased dose of gabapentin (Neurontin) that my new neurologist recommended. As I wrote in my story about the pain of having and treating neuropathy, fatigue is a common side gabapentin side effect.

When I got home, the paper had arrived. I took all my stuff and put it on my grandmother's coffee table next to my couch. Maddie came in and settled down on the living room floor. I fell asleep and didn't leave the house as the temperature rose. Later when it cooled down, we did the afternoon version of the morning Tailgate expedition, this time going to The Thirsty Mind and sitting outside, me with iced coffee and Maddie with water...and a piece of my cookie.

It was a deeper fatigue than the kind caused by running around doing things, but all my activities in the preceding week probably contributed.

I have been especially busy since last Sunday, when I went with Margaret on a bike ride starting in the town of Danvers to benefit cancer research at Beth Israel Deaconess Medical Center. The ride through surrounding towns was only 10 miles, but it was hilly and my first time back on the road since my accident. We made light of doing only 10 miles, but with the hills and traffic to contend with, it was challenging enough for me.

I had ridden several times on the bike path though I only took my bike out of the garage late in the summer. Having neglected it, I was glad to hear of Margaret's plan. When I told Katie that I was going to graduate off the bike path, she asked, "Who signed off on that?"

It's good to have kids who watch over you. I laughed and said that Margaret signed off.

The event honored a Beth Israel Deaconess patient who received a successful stem cell transplant for acute myeloid leukemia, or AML, the same blood cancer that I had. I talked to the patient, Mary Ternullo, and discovered that we have a lot in common, including side effects.

Mary had signed up to walk, as had a friend of hers who also had a transplant. The friend's side effects were among the worst I have heard of. She has ocular Graft vs. Host disease, causing her tears to dry up. I'm not sure of the exact reason for this, but she has also lost her sight.

Yet wearing sunglasses as we talked at the picnic-style lunch after the ride/walk, she cheerfully talked about her grandchildren and asked me about mine. We fell into the same kind of banter that I used to have with my late friend Patricia, comparing numbers of teeth lost and long waiting times for the opthamologist we both see.

The three of us stood together and declared ourselves stem cell sisters happy to be alive on a beautiful day marked by good cheer.

Back home, after a few days doing the usual things, I took off for the "old country," New York, to celebrate Rosh Hashanah. This meant driving to Fairfield and taking the Metro North Railroad to Grand Central.

I got in at just about the right time to visit my Aunt Marge, who lives near the United Nations. With the UN in session, the area is filled with Diplomat license plates and police barricades. I brought over a round challah that I picked up in Grand Central. I said, echoing my father, "Here's to a year with no sharp edges."

Later that day I said it again at a family dinner at my cousin Betsy's in Queens. (From the upper east side, easy peasy, the 6 train to 51st and change to the E.) The next day, brunch with another cousin at Tom's Restaurant , (of Seinfeld fame) near where I was staying at a friend's house on the Upper West Side.

My cousin drove me from 112th Street up to 125th Street so I could leave from the Harlem/125th Street station. But she didn't want to go all the way east, so I decided to walk from Riverside Drive to Park Avenue. (2.1 miles, but I didn't know it at the time.) I don't know what came over me. (Well yes, I do.)

One hundred twenty-fifth street was lined with sidewalk vendors, like one big street fair. Dragging my suitcase and wearing my pink baseball cap, I must have looked like I blew in from Oklahoma. Nobody batted an eye. By the time I was so hot and tired that I realized I should have taken a cab, I only had a few blocks left.

I made the next train out by a mere three minutes, dashing up the stairs rather than risk the temperamental elevator. (Good thing I didn't belly flop onto the train like I did in the Paris Metro.)

Once back in Fairfield, I decided to walk to Ben's house from the train station (.08 miles).

It being Friday, I got caught in traffic on my way home. It took almost three hours for a trip that normally takes a little more than half that.

So I guess it's safe to say that all of this contributed to my fatigue.

Friday, September 15, 2017

'Running for My Life' earns best blog award

I'm not that big on promoting myself, though I guess I should be. That's how freelancers get more work.

It probably stems from my reporter's sensibility that you don't make yourself the focus of the story.

Well that was then and this is now, and we displaced journalists trying to make a go of freelance writing have to market, pitch, and promote.

In that spirit I forgot to say that for the second year, Healthline.com gave me a best leukemia blog award. I heard the news early last month. I was honored to get it, as I was last year. Sometimes I think of stopping, but then I hear that a post has made an impression on someone or I get an idea for a blog post and off I go. Nine years already.

"We’ve carefully selected these blogs because they are actively working to educate, inspire, and empower their readers with frequent updates and high-quality information," according to the press release that put mine in the top 10 leukemia blogs.

"
For people living with leukemia, those who know them, and those who have lost someone to the disease, support can come from many different sources, including these incredible blogs," it continued.

The editors wrote this about my blog: "Though she was cured three years ago, Ronni continues to face a host of 
chronic side effects, sharing her continuing struggles with the after effects of the disease on her compelling blog."

You can read the rest of the release and the list of the top 10 blogs here.

Healthline is a health information site with more than 40 million visitors a month.

Wednesday, September 13, 2017

Fun with kids and at Dana-Farber

Minnehaha Falls, Minneapolis
After a couple of downbeat posts about neuropathy and nightmares, it's time for some (mostly) fun stuff.

I had a great four days in Minneapolis with Katie, arriving home Monday feeling beat but feeling good.

It was sunny and warm, great for swimming in Lake Nokomis, riding 10 miles round trip along the Mississippi on the Grand Rounds Scenic Byway and stopping for our selfie at Minnehaha Falls (first time in a long time on hills but granny gear served me well), walking in parks, drinking coffee, eating out and hanging out, having lunch in Saint Paul with our friend Marysue Moses, enjoying my fabulous Airbnb, going to lively Shabbat services on Friday night, and going on an adventure to picturesque, artsy Stockholm Wisconsin,  about an hour and a half of a scenic drive away.

I love Minneapolis. Parks and lakes all over the place! 

Found Joe at the Open
It can be pretty hard to track down all three kids in the same general time period, but I accomplished it by seeing Joe briefly when he was working at the US Open while Donna and I were there, and by going with Ben and Nell to the beach in Fairfield on Labor Day and also saying a quick hello to Meghan and baby Callen. 

Long-lasting feel-good moment: Nell holding my hand when going down to the water and saying "Grandma jump" when we were jumping in the (small) waves.

Today it was back to the medical grind: checkup with Melissa followed by ECP. It is not exactly a grind because I love seeing Melissa and spending three hours with the fun nurses at the Kraft Family Blood Donor Center. But it is a time sucker. I did get to play tennis but cut it so close (not wanting to leave the Canoe Club) that I didn't take a shower. (Sorry, gross, I guess.)

Ben and Nell at the beach
I am farblondjet over the neurologist's instructions on what to do about the neuropathy. I shared my confusion with Melissa. The neurologist said to increase my gabapentin at night, so I took three 300-milligram tabs at night as opposed to one, per her instructions. That was Monday. 

Yesterday morning I felt drugged. It was my first day back at The Literacy Project. I was embarrassed because I couldn't keep my eyes open. It was like being back in school and hoping the teacher didn't see me. There was probably some leftover fatigue from my trip, but I don't believe that accounted for such intense drowsiness. Melissa said to take  two instead of three and call the neurologist. My feet only tingle when I'm still, so maybe the solution is to run around all the time. 

While I used to live by my counts, these days I mostly just ask how they are. She said they were excellent, and that was good enough for me.

Selfie with Francisco 
On  my way across the bridge to ECP, aka the blood treatment for my graft vs. host of the skin, moved to 4 p.m. now, I was happy to bump into one of my favorite doctors, infectious disease specialist Francisco Marty. He has an actual infectious smile. Even when I was super sick, I smiled when he came in.

He is also as excellent photographer, as you can see from our selfie. 

At ECP, my nurse had trouble getting the needle in. Ellen, the PA, came over to distract me. It hurt for a little bit but then settled down with help from a heat pack. 

It can be a lot of fun over there.

One of the nurses started to crack up over Ted Cruz's account liking a porn tweet. She came over to my bed and reported that Cruz's college roommate said that based on Ted's behavior back then, he was not surprised. A couple of others came over.

Two residents stopped by to chat. I'm as interested in them as they are in me, and hearing their stories helps pass the time.

We were three patients with four nurses, busy monitoring us but also with time to talk. I'm getting to know them as friends. I bring my laptop, New Yorker and a book, but sometimes, like today, I'm so busy talking and laughing that I don't even take anything out.

All in all it wasn't so bad.

But getting home after 9 at night, and then eating and writing this, and ending up staying up too late, makes for a long day.

Thursday, September 7, 2017

Getting out of a couple of binds... in my dreams

Is it a good dream or a bad dream when something terrible happens and you get out of it?

Subconscious themes merged with images of cars submerged in water in hurricane-ravaged Texas.

I dreamt I was in the car talking on the phone when suddenly I came to the end of the road and said I had to get off the phone. Not sure who I was talking to, but it was too late to stop. The car slipped into the water. (Possible note to self to stop talking on phone in car?) The car turned into a boat. The boat developed leaks. (Oh wait, a friend said she is writing a book about shipwrecks, about leaky boats, so maybe I stole her dream.) I escaped from the boat, swam away and walked out onto a road.

I wondered if I should tell someone about the submerged boat. I figured I could get away with it because nobody would know it was me. But I felt bad and went back to look for it. Workmen were putting it back together. All was well.

Although I got into deep water, I found a way out.

According to this post about car wreck dreams, those where you go into water have a specific meaning: "When your wreck involves water or you dream about a submerged car, it's possible an emotional issue burdens you. In dreams, water is said to represent feelings, so to crash into a river or lake might mean you've been taken off course by an emotional issue."

But wait, during that same night I went to work at The Republican, thinking everything was fine until Mimi and Mary came over and told me I was topless. (Mimi says I should stop having these nightmares about work already, but my subconscious hasn't gotten the message.) I had work to do but figured I had time to run out and buy some clothes. I didn't think it was so bad but I didn't want to get in trouble. I was going to miss lunch but figured that emergency shopping took priority.

What do those naked dreams mean? According to this post the Dream Well, it depends on how you feel about it. (I didn't feel so bad.)

"The degree of discomfort we feel in a dream where we are naked in public is important," according to the post. "Feeling suddenly caught off guard, but not deeply upset by being naked in a dream is likely related to a shorter term or more recent life event.  A dream like this may be about feeling vulnerable as we experiment with a new situation, such as a new job or relationship."

Things are going well in something new. But it is challenging to teach an old horse new tricks. Plus you end up revealing your scars, and I have plenty of them.

Or I could just be dreaming about neuropathy.

Sunday, September 3, 2017

Riding on bike path, waiting for a doctor

Back in the day when I biked around Prince Edward Island with Anne and around Nova Scotia with Katryn and went 80 miles a day around Civil War battlefields with Rook, a 12-mile bike ride was a hiccup.

But that was then and this is now, when I have ridden only on bike baths since my accident several years ago, and when doing so, have not gone very far. 

This summer I barely got my bike out of the garage, with tennis and a little running having taken precedence.

Last week, however, I put my bike in the back of my car (probably the hardest part of the endeavor) and got onto Norwottuck Rail Trail  behind Walmart and rode to the end and back. 

I had done part of this ride about a week before and wanted to try the road in preparation for an upcoming 17-mile-charity ride that a friend mentioned for us a way to ride for a cause and get our bikes out of the garage.


It took only one call to a friend to convince me to stay on the bike path. The friends and family who watch me say that's what I need to do (especially Joe who said I was not allowed on the road after he picked me up at the hospital after I fell off my bike and grazed my head on a passing car when riding on the road with a friend). So I rode to the end and back for a total of 12 miles. It is mostly flat with enough small inclines to give me a chance to switch gears, but nothing challenging.

The feeling of flying, even at my slowish speed, and the wind on my face, reminded me of why I used to like biking so much. And the twilight view of the mountains was spectacular.

The couple of days after that were not so restful. Tuesday and Wednesday were especially draining; Margaret, when she picked me up at Dana-Farber after my neurology appointment on Tuesday, could tell from the way I was practically whispering that I was low on energy.

There is something about waiting for a doctor's appointment that can take a lot out of you.

Tuesday started out on a low note when I went to drop Maddie off at Jim and Jane's on my way to tennis. My plan called for starting out with tennis to get me on the right footing for two days of appointments, then going home and getting picked up at 12:30 for my 2:30 appointment with a neurologist, then sleeping over at Margaret and Nick's and going back for ECP (the light treatment on my blood) Wednesday.

Jane called my landline, which I don't always check, and left a message in which she said that they would not be home at the usual time. So when I got to their empty house with Maddie it was too late to turn back, drop her home and go to tennis. 

This didn't leave me much time to do much more than a few things around the house. Not a big deal in the scheme of things, but it was going to be my only exercise that day, so I had been counting on it.

I already know I have neuropathy caused by chemotherapy (chemotherapy-induced peripheral neuropathy) but have never actually seen a neurologist to confirm it. Dr. Alyea had prescribed gabapentin, one of a variety of drugs used to tamp down the symptoms, and although it takes the edge off, I always have some amount of numbness, burning and tingling.

The idea for seeing a neurologist came about when I mentioned that I had written a story about what a pain it is to have and treat neuropathy. 

I got to Dana-Farber on time Tuesday. And waited two hours.

In my story, I wrote about the problem with the medicines now prescribed for neuropathy: The more you take, the better chance you have for symptom relief...and the greater the side effects.

The doctor told me to take more of the same. She also did not like the fact that I'm on another similar drug.

A local doctor had prescribed drug #2 for another purpose, apparently without knowing that it is also used for neuropathy. 

The neurologist said I should get off the other one but not without guidance from the prescribing doctor about titrating down.

I left a message and haven't heard back, so I'm stuck on the two drugs. I haven't experienced any new problems, but I would like to get off asap before I have something else to worry about.