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.


Wednesday, August 23, 2017

Do that twenty-three times

Almost birthday party time
I don't know where everyone was for George's clinic at the Canoe Club today. I guess some are injured and some are just busy doing other things...or maybe they were deterred by the overnight rain.

In any case, while sometimes we use up three courts and don't all get a good amount of time with George, today when I got there, just one other person was hitting with George. And he strained his arm, so it ended up being only me.

Because George does repetitions of drills based on date of the month, I had to do everything 23 times.
Getting a little tired after hitting 21 in a row and hitting the 22nd into the net, I said I thought I had hit enough. He re-started at one anyway. "But it's my birthday," I fake-whined. "No it isn't," the drill sergeant said. "It's tomorrow."

We went back to one.

I was doing one-bounce slices at the net, forehand and backhand, and then ground strokes from each side, aiming at cones.

I knocked the ball off the cone on the first forehand and backhand. He said I should play the lottery. I just remembered that I forgot to do it.

Afterwards he said I did a good job and showed a lot of stamina.

I don't have any medical appointments this week, but I'll make up for it next week by probably having three: a neurologist for the first time, ECP (the blood treatment for my graft vs. host disease of the skin) and, possibly Melissa, my nurse practitioner. Without all of that and without my donor, Denise, I wouldn't be having a birthday tomorrow.

Some stem cell transplant recipients call your original birthday your belly button birthday. That sounds silly. I call the extra four my "re-birthdays" and the one on Aug. 24 just my plain old birthday. Old could be the given word here.

After I wrote my Huffington Post piece about my father's death from a brain tumor, I connected with some people who had lost friends and family to a brain tumor or who had one themselves.

One had tweeted to stop complaining about getting old because you're lucky you get to be old.

Gotta keep that in mind.

Sunday, August 20, 2017

Driven to distraction, driving towards NY

Grown-up kids at dinner with mysterious object
Been driving a lot because...

On Wednesday I reserved a ride for the trip to Dana-Farber. I got the confirmation call the night before, and then, the day of, a call from the driver, who asked if I wanted a ride at 2.  I said yes.

So I packed up and looked out my driveway, and when at 4:06 there was no driver, I called the number he had used to call me. But I got no answer and no voicemail. I called over and over until about 4:15 and then finally gave up and called the complaint line at MART, which arranges the rides.

I got put on hold and then told that the driver had left, listing me as a no-show.

WHAT?

I said.

"I've been waiting at my door."

The operator said she would file a complaint for me but in the meantime I was on my own.

It was a company (Prevalent Transportation, one of the contractors) that has taken me a zillion times before, and they know to come in the driveway or I can't see them. This happened once before when a driver waited at the foot of the driveway, didn't see me, and left without calling. If they don't see me, they can call! They usually do. The last time this happened, the operator told me they are not obligated to come into the driveway or to call. I imagine the guy just didn't feel like doing his job.

I called my people in pheresis at the Kraft Family Blood Donor Center at Dana-Farber and asked what was the latest I could get there. They said 4:30. A friend said he would drive me but by the time he got to my house I would never make it. So around 2:30 or a little after I jumped into my car and sped off.

I made it exactly at 4:30. They were impressed. I was wired and upset.

My nurse for the day, Marlene, tried twice to thread the needle into my left arm. Twice, it hit a valve and would not go in. I didn't have the help of my oxycodone because I couldn't take it and drive. It was unpleasant but I did some slow breathing.Tina, another nurse who was there, gave it a try on the other arm and went in successfully. They said it would go faster if I tried a double – not exactly the technical term – meaning one in each arm. This is possible with the new machines. I said I wouldn't mind but I would wait for a time when I had my pain meds in case I had a problem.

I started to take a little nap when the procedure was under way, but a doctor came over to talk, so that was that. Mandy is a nice pathology fellow. I showed her some of my medical writing, such as what it's like to live with two sets of DNA, and my most recent, on how treating neuropathy can be a pain. She said I should go on TV to tell my story of the four bone marrow transplants. I said I didn't know how to do that and wasn't sure if I wanted to anyway.

I finished around 7 and got back home around 9, pretty tired. It wasn't the best timing, because the next day I had planned to pop down to New York to see some friends and family and do some of the usual things such as run in the park.

I did it anyway. I parked in New Haven and took the train to Harlem and then went on to my cousin Jeanne's. As you do when in New York, I walked all over the place. Yesterday I did around 17,000 steps.

Some of us had a nice shabbat dinner on Friday. It was extended family, kids and a baby. Time flew. I was compelled to mention this while looking at my high school friend's children and a grandchild. I thought we were just in her room making lists of the boys we liked.

For dessert, I was surprised with a pre-birthday cake. Sweet! (One Donald Trump sentence structure allowed per blog post.)

Yesterday I ran a little more than four miles to and in the park and up to the reservoir. I considered going all the way around, but I looped back on the bridal path instead.  For someone who really isn't running, I figure that isn't too bad. 

There was so much activity that I thought a race was going on, but one of the runners said it was a training run for the New York Marathon.

After leaving the park, I got a bagel and a coffee and sat on the steps of a church on Lexington Avenue about 10 blocks south of 86th and Lex, where my mother's store used to be. Lexington Avenue feels in many ways the same, but the block where my mother's jewelry store used to be has totally changed. It's one big blob instead of small stores such as my mother's and Reggie the dressmaker's.

I was going to leave after my run but headed over to UN Plaza to visit my 98-year-old aunt again. When leaving New York I tend to dilly-dally even more than I do at home. I knew that I would be tired after picking up my car in New Haven but figured I'd caffeinate and get through it.

On the way to the 125th Street/Harlem train station in an Uber, I looked around and realized that I had left my laptop in Jeanne's apartment. We were already at 106th Street and would have to go back to 72nd. I asked the driver if he could turn around, but, of course, it is not so simple in an Uber. I had to send him a text message with the "new" address (the address from which he had just picked me up ) and an explanatory note and then re-enter the final destination. It's all in the app, so there was no such thing as using old-fashioned words to tell him, I later realized. Also, we had a bit of a language barrier. It was cumbersome and made me wish I was in a cab.

At $32, it was a pretty expensive trip. I don't know if a cab would have been better or worse. 

Having missed my originally chosen train, I got on the next one with a few minutes to spare and promptly fell asleep. Once at the train station in New Haven, I went to Notes on my phone to check my parking space number and saw that I must have not hit SAVE: The field was blank. Another fine kettle of fish...

I told the people on the elevator what had happened, and one man said I could get off at the sixth floor and just walk down. I remembered parking pretty quickly on the first floor, so I asked the elevator people what they thought about my starting at the bottom. "You could have lucked out," a nice woman said.

So I rode up with them and then rode back down, got out, and looked around for A-1 or something like that. I clicked the door unlock on my keys. A faint beeping grew quickly louder. 

Mirabile dictu!

I found the car, got in, and arrived back home around 9 with no more mishaps.


Today I was tired but still glad I went.

Monday, August 14, 2017

Feet (or rather heel) don't fail me now

Tanglewood on a beautiful day 
After fear of relapse and fear of death, the thing I fear most is return of the dreaded heel pain, plantar fasciitis.

It practically crippled me for months that I had it years ago, and it was a pain to get rid of, cured finally by the soft orthotics that I got from physical therapist Ken Holt out in Montague. I complained bitterly (a favorite word of my father's) about it, while not complaining at all about leukemia. So the twinges that I have had lately have set off alarm bells. I do not want to go back to the period when I couldn't even walk down my driveway without piercing pain.

It might have started from walking barefoot more than I used to; a friend doesn't allow shoes in the house, and I walked barefoot until I could find the appropriate footwear to put on in place of the slippers offered. The slippers were almost the same as going barefoot because they were flat, plus, they were ugly! I repurposed a pair of old sandals by cleaning them. Opinion varies on whether going barefoot is good or bad for plantar fasciitis; in my case it is bed because I need the support.

Then I exacerbated it on an otherwise lovely day at Tanglewood with the Boston University Alumni Association and guests last week. (Some people were confused by my FB posting saying I was with the BU group because they thought I went to Vassar. I got my undergrad from Vassar and my master's in journalism from BU.) I have been to Tanglewood many times but never took an official walking tour like I did last week. Learning about the history was interesting on the beautiful day, but I did it in shoes not made for walking. Hence by the end of the day my feet really killed.

It didn't detract from enjoying the music while sitting in the Shed, a totally different experience from sitting on the lawn, on the day of Yo Yo Ma's "Little Carlito" entreaty. Such a pleasure to hear a star speak like a "real" person, even giving the number of the Stockbridge and Lenox police departments should anyone find the conductor's lost dog. If you read this story, you will discover the happy denouement.

I agree with my friend Ken Ross, who said of Yo Yo Ma in his review on Masslive, "One thing I will say about Ma that really makes him stand out - he always looks so happy to be performing on stage. Some artists might look like tortured souls. In contrast, Ma often has a genuine smile on his face when he's playing. And today was no exception. Other things I noticed about Ma today during his performance of Schumann's Cello Concerto - his effortless transitions, his crystal clear tone, his lighter-than-air touch and his superb sense of rhythm."

Meanwhile, back to my feet...I  stretched and iced a lot during the week and began to feel reassured that the twinges would stay at just that. Though you never can be sure because it can sneak up on you.

Race volunteer
On Friday I was a volunteer at the T-shirt handout for the Bridge of Flowers 10-K in Shelburne Falls, held on Saturday. I was with others from Northampton's Cancer Connection, which, among other non-profits, benefits from the proceeds. We worked at the Shelburne-Buckland Elementary School for a couple of hours, with a break for a spaghetti supper and ice cream. When chatting with some of the runners while in line, I told them I was a runner who wasn't running...much. I told them I was playing a lot of tennis and the running was taking a back seat. Still, I had a twinge of envy as I gave out the T-shirts.

Afterwards, I drove to the Bridge of Flowers, walked across and back, and lingered for a while. In the twilight, it was so beautiful that it was hard to leave.

Bridge of Flowers at dusk
Yesterday when I woke up early enough to go for a run and with no tennis planned, I said to myself that if I was still a real runner and not a so-called one, I would take advantage of the cooler morning to go out and do it. With tennis usually taking precedence, I last ran about a week and a half ago.

So I laced up and stretched and out I went. My mind was its usual chatterbox, but by the time I got into it a little, it had quieted down. I got a taste of why I like it so much as I got into a little bit of a groove. I tried my best to pick it up a little between certain markers and felt pretty good.

When I checked my mileage on my phone after, I was surprised to see that I had gone 3.7 miles. Nothing hurt. Still, today, I got a few more twinges. I better pay attention to them. In many ways when you get to a certain age, running is not good for the body. But it is definitely good for the soul.