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, 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.