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.

Saturday, August 5, 2017

Writing up a storm, coping with neuropathy and other things

At fun party in Fairfield for Nell's second birthday
I've been remiss in posting on the blog but busy writing in other places and doing things such as going to Nell's second birthday party (fun) and going to Dana-Farber for ECP sans my friend who was driving me because the friend is on the disabled list (not too bad of a drive because I had one of the best drivers though not great about the friend on the DL).

I wrote this one for the Huffington Post about how John McCain's brain tumor diagnosis sparked memories of my father's. And another  about the difficulties in treating neuropathy. I did research and interviewed people who suffer from this intractable problem that has plagued me since my last round of chemotherapy eight years ago. (It must have been the strong rabbit serum, or ATG, that thankfully knocked the leukemia out of me.)

As the people I interviewed told me, it is a strange condition in which your extremities (in my case my feet) are numb and tingling and painful at the same time. I had proposed it to an editor I met at the American Association of Journalists and Authors conference in New York this spring. It was through Client Connections, a sort of speed dating event with editors, in which you have nine minutes to present yourself and your ideas.

Callen snoozing
You don't always get a story, so I was glad I got this one. It was my first time and I admit to being flummoxed. I haven't heard from the two other editors and should probably follow up by sending them the neuropathy clip, which is not a clip in the old sense of course but I still like to use it. Marketing is a good part of this freelance life and not one that an "old" newspaper person like me enjoys, but I have to do it because there are a lot of us out there.

My story ran as the August feature on the website of the MedShadow Foundation, whose goal is to educate on the side effects of prescription medicines and the potential alternatives. Of course as I was writing it, my feet felt worse, and I imagined myself eventually incapacitated as were some of the people I interviewed.

Which is similar to when you're a reporter and you write about people suffering from different diseases and imagine yourself getting that same disease. (You might have tried to avoid the story by making yourself "invisible" by sliding down in your chair when the editor came by with the assignment that you knew was coming but somebody had to do it, and the editors knew the tricks.)

And then you Snapped Out of It, thinking of good things that were happening at the time or just bringing yourself back to earth by reminding yourself that you were writing about other people and not about yourself.

Part of dealing with neuropathy has to do with distracting yourself rather than focusing on it. So other things I have been thinking of include cute talkative Nell and cuddly newborn Callen (who I cradled in my arms at the birthday party); happy Ben and Meghan and Joe and Katie all doing such good jobs; the guy whose name I can't mention (due to confidentiality) who I'm now taking care of as so many people used to take care of me; coach George sharing his tennis wisdom which I keep saying I'm going to write down, (and saying to me at a clinic yesterday when I was tired and trudging to pick up balls, "On your toes, on your toes"); and tennis friends joking yesterday that the title of my autobiography could be what I said when we were doing volleys and I made the right shot with the wrong foot in front.

"I had the wrong foot, but I made it."

Watch Federer always using the correct foot!

Friday, July 28, 2017

Two girls from New York lost in Vermont

When two writers get in a bind, what is the logical thing to do?

Write a headline about it, of course.

The headline of this post is what we came up with when driving down a dark country road after an extremely interesting and civilized evening of chamber music at the Marlboro Music Festival in the eponymous town in Southern Vermont on the campus of Marlboro College.

I had gone with a new friend who had an extra ticket. It was magical out there, with the landscape having a different feel than here in the Valley. I was glad I went. The New England Travel Planner gives a good succinct description:

The Marlboro Music School and Festival, directed by Richard Goode and Mitsuko Uchida, brings together 75 of the most talented musicians in the country, some famous and some soon to be famous, for two months' practice, consultation, and tutorial.

On weekends from mid-July to mid-August the school is opened to concert audiences, most of whom have ordered their tickets weeks or months in advance and have also made early lodging reservations.

The auditorium at Marlboro College (map) seats fewer than 700 people, and to keep the spirit of the chamber music, directors and performers resist demands for a larger hall.

Young musicians and accomplished artists wove an fascinating musical tapestries. The hall is small enough so that even in the back, you can see the emotion in the performers' faces and watch how much of their body they put into a piece.

We saw String Quartet in D Major, Op. 50, No. 6, by Joseph Haydn; 8 Etudes and a Fantasy, by Elliott Carter; and String Sextet in A Major, Op. 48, B. 80, by Antonin Dvorak. I thoroughly enjoyed the first and the last but have to confess to not being able to make sense of the modern work in the middle. I closed my eyes and took a micro nap. I was glad I was awake for the complicated Dvorak, which went through multiple moods and tempos. At one point for some reason I imagined the music to be the soundtrack for characters in a fairytale dancing through the woods.

The mood continued when we drove off through the woods, took a turn, and soon realized we did not know where we were. We had no phone reception, hence no way to get directions on the unmarked road. We drove a little, hoping to see a road sign when suddenly we came upon an inn. We decided to drive up and ask for directions. It was before 10 p.m. and we expected to see someone at the reception desk or in the living area. There was nobody to be found. We saw empty card tables, a couch with pillows, and an unattended bar stocked with liquor. If it was a play or movie, we might have poured ourselves a drink while we pondered our next move.

Admittedly mawkishly, I said, "Maybe they're all dead," and I had visions of Agatha Christie's "And then There Were None." We gave up and had just begun to back out when a face peered suspiciously out of a window. I knocked and mouthed the words, "Can you come out?"

A man came out and said we were actually headed in the right direction, Brattleboro, through which we had come.

I had met my new friend through the Western Mass Dog Walkers' Meetup. When we were doing introductions of ourselves and our dogs before we took a walk at Mt. Toby, we realized immediately that we had to have coffee.

Both native New Yorkers, we had each gone to a Friends School, me to Friends Seminary and Abigail to Brooklyn Friends. That alone was enough for a long conversation. She also went to Vassar, though only for a year, and she is also a freelance writer. We are both dog people, and we both have a Lives.

Here is hers: Bitten to the Quick
And at the risk of repeating this ad nauseam, here is mine: Running for My Life

Saturday, July 15, 2017

Theater in NY, baby in CT...reprise

With new grandson Callen
"My sister just reminded me of the day a dozen years ago when I had had my Dana-Farber intake appointment and I was standing outside the Cheesecake Factory where she and Korby and Kit, the two friends who had brought me to Boston, were getting a table.

I was on the phone with Jim, in a crouch, sobbing and saying, "I'm never going to see my grandchildren."

Although I said that many times over, the first one stands out because it was all such a shock. One day I was a busy single mother of three, running around like crazy, holding down a full-time newspaper job, playing on a tennis team and running races like the Saint Patrick's Road Race that I had recently completed and during which my fatigue had sent me to the doctor and led to my leukemia diagnosis, and the next day I was a cancer patient facing three rounds of chemotherapy, multiple hospitalizations and a bone marrow transplant.

The time that I remember most clearly occurred later – eight years ago – after my last relapse when, while Diane drove me to the emergency room on a snowy December night and I knew I was facing stronger chemotherapy than ever and my fourth bone marrow transplant, I slid down in the passenger seat and said, once again, "I'm never going to see my grandchildren, I'm never going to see my grandchildren."

And there I was yesterday in the maternity section of Norwalk Hospital holding my two-day-old granddaughter in my arms, feeling the warmth of her body, finding it hard to believe that my baby was now a father, and loving how happy Ben and Meghan looked."

Thanks to Dana-Farber, to The Gift of Life Bone Marrow Foundation that found me my donor, and to that donor, Denise, and to so many others, my prediction did not come true.

I actually wrote that two years ago and it still all holds true.

I thought I was never going to see my grandchildren, and now I have welcomed two at around the same time of year.

Baby Callen was born on July 12, a big boy weighing 9 pounds 4 ounces.

And there I was two days ago in the same maternity section holding my grandson this time, having just come back from New York with Katie, having just seen two shows, our traditional Shakespeare in the Park and a Broadway show. 

It is not too bad to be a creature of habit under certain circumstances.

Two years ago, although a little later in the month, I wrote Theater in New York, baby in Connecticut, after Katie and I saw "Hamilton" and "Cymbeline."

This year we were going to stop in Fairfield to see Nell, but Ben suggested parking in Stamford, the station nearest the hospital, because they expected the baby to arrive before his due date of July 19.

Having fun on the Shakespeare line
Sure enough, it worked out well, because we were drifting in and out of sleep at our Airbnb on the lower east side (after seeing Come from Away, which was wonderful) when Ben called to say the baby had been born and Meghan was doing well.

The next day we were up bright and early to go and get on the Shakespeare line. Some people don't "get" why it is fun to sit for four hours waiting for free tickets to see Shakespeare in the Park. But it is one of our favorite things to do. We got there at 8 a.m. (people start lining up at 6 a.m.) and got so engrossed in talking to people around us and watching people and their dogs go by that when they started giving tickets out at noon, we felt like the time had flown by.

We thought it might rain on the line or at the show, but it didn't.

Jeanne and Amanda met us at the show, continuing the tradition of Shakespeare in the Park with cousins. (I texted Serena that I missed her!)

The performance of Midsummer Night's Dream was magical.

I'm writing this from beautiful Wellfleet, where we are squeezing in a couple of days with Diane and David. We got here yesterday in the late afternoon, but with enough time to get down to the beach, where I did a little jogging near the water. Today I got up bright and early and went to the Flying Fish to get Cape Cod muffins and scones. Next it's on to the beach or maybe a dip in a pond. All good traditions.

Ben sent the above photo of Nell looking at her brother. They will have birthdays close together like Ben and Joe. Her birthday is coming up in a couple of weeks and I'm looking forward to seeing her then.

I can't thank Denise and Dana-Farber too many times.

Thursday, July 6, 2017

From dermatology to dinner and theater...hopefully

When you need to go to Boston for a dermatology appointment, forgot to book a ride because you were writing, need to drive yourself but first need to go to body sculpt class at the Y and then get overcome by the urge to pull weeds and pine needles out of the garden (without putting on sunscreen or gloves) and need to answer emails and realize you have half an hour to get ready and get out of the house. And also write this post. Today I am my own crazy driver.

I wrote this for Facebook but moved it over to my blog. I'm not sure why, except maybe it inspired me to write a post. I've been remiss.

I need to drive to Chestnut Hill to see dermatologist Stephanie Liu, who is in the same office as dermatologist Jennifer Lin, who I saw recently on a day where they would not let me book an appointment when Stephanie was in the office. I assume it is because of insurance. They look at different aspects of my skin but must have the same office code for a checkup. I told Dr. Alyea that although I like Stephanie very much, I felt it was a duplication and I was thinking of not going to see her again. He said I should see all of them. I lost count.

Dr. Liu is director of the Graft vs Host clinic and specializes in subcutaneous dermatology, with knowledge about layers of the skin. So, two doctors, two trips, for different layers. We will discuss my ECP schedule and my continuing issues with rippling my Graft vs. Host of the Skin.

I assume she will also look at the top layer because I have been watching (OK, also picking at) some flaky spots, the flakiness signaling possible squamous cell cancer. I got obsessed wth a couple of dark spots on the back of my calf and went into a melanoma whirlwind in my head. I sent Dr. Lin some photos but she did not write back. 

So today I will see.

I hope they don't keep me waiting the usual forever.

I'm trying to get back for a "girlfriend" dinner and outing to the New Century Theatre's performance of "The Foreigner," directed by Jack Neary at PVPA. 

Good for them to have shows at PVPA and the Academy of Music after leaving their home at Smith College in what artistic director Sam Rush called an "amicable divorce from the college. I've been following Sam and Jack and the rest of the Mount Holyoke College Summer Theater crew since my T-T days and am glad that they're continuing the tradition.

Saturday, June 24, 2017

Great trip to NY, worrisome thoughts about skin

With Allison Janney after 'Six Degrees'
During three wonderful days in New York, I did not give a passing thought to all of the things that could jump out of the dark – or rather sprout on my skin – and kill me.

I enjoyed showing some of my stomping grounds to a friend who hadn't seen them. We had started with the High Line, which has gotten way too crowded, so we walked two blocks west to the beautiful Hudson River Park , from which you can see the Statue of Liberty, and we did a walk/jog and enjoyed the view. We walked everywhere, even on a day when we got soaked in the rain. I looked at my phone at the end of the day and saw that we had done more than 21,000 steps.

We met a friend at The Plaza and walked through Central Park on one day, and on another went up to my old homestead at 1200 Fifth Avenue. We talked to the doorman, Frank, and then walked up a few blocks to the Flower Garden to look for my parents' bench. Sitting next to the plaque that we got with donations to the Central Park Conservancy after my mother's death, I at first felt so sad that they weren't there with me. Then a feeling of calm enveloped me because I realized that the ARE with me.

Three great restaurants, (Deux Amis, Sardi's, Joe Allen) and two great shows (hilarious Spamilton and thought-provoking Six Degrees of Separation, which sadly closed early) and lunch at a favorite hangout in Chelsea (the Gray Dog), combined together to make it hard to leave.

Back at home, I felt the urge to go to Boston asap to see one of my many dermatologists and find out if I need biopsies on new spots that have sprouted on my face.

At this point I worry more about my skin than about my blood.

True confessions, a couple look worse than they should because I picked at them. When I called and got the OK to apply chemo cream, the nurse relayed that the doctor said not to pick. I asked how you do that, and she said, handcuffs.

The other day I went into a jewelry store in Northampton to get a battery for my watch. While waiting, I tried on some Alex and Ani bracelets that were on sale. One of them had a little trouble going over my hand. The saleswoman asked if I had lymphedema.  I am self-conscious about my hands. I asked why she asked. She said had been a nurse who gave radiation to cancer patients, but when her mother died many years ago of pancreatic cancer she could no longer be around cancer patients. She was thinking about going back. I said she could probably help some people.

I gave her the three-minute summary: leukemia, transplant times four, graft vs. host disease of the skin, hence the swelling, which I thought was getting better.

"Is it that obvious," I asked? She said no; she had just noticed because of her training.

The bracelets were silver that will go with my gold.

A little retail therapy saved the day. At least temporarily, I forgot about the spots on my skin.

Monday, June 12, 2017

Ten years ago this month things were not so good

At bottom right, 11 years volunteering
I might have burned myself out with my last post – I haven't felt like blogging.

But I figure that although no news is often said to be good news, people might think something terrible happened – which they correctly thought when I disappeared for a while after relapsing (two times) – or they will think I have nothing left to say and will stop checking in.

So herewith a post.

Things have been pretty calm, which is news in itself. Our summer tennis league started, and I'm enjoying playing outside with my Paper Dolls teammates. We have an especially fun time when we play with our sister team, the Valley Dolls and go out afterwards to Pizza D'Action in Holyoke.

I'm supposed to stay out of the sun but can't do it totally because summer means outdoor tennis.

I put on a lot of sunscreen and wear a sun protection shirt and gloves. The shirt by Coolibar is supposed to be breathable, but it is not, so if anyone knows of a more breathable brand, please let me know. By the end of one of our clinics at the Canoe Club, I felt like stripping down to my sports bra.

Lucky for my skin but bad for tennis, those Paper Dolls matches were in such bad weather that we played in light rain in the last one, and in the first one, we fought the wind. My father always said don't complain, it's an outside game.

For sun protection, I also bought driving gloves. They go up to my elbow and make me feel elegant. Unbeknownst to me until recently, the sun can damage your skin through your windows and windshield, making your left side especially vulnerable.

On my most trip to Dana-Farber for a checkup with Dr. Alyea, we went back and forth over whether I should increase my ECP to every week (to hopefully reduce the rippling on my thighs and abdomen) or whether I should stay at every other week and hope for more slow improvement.

We ended up at the same place as in every other consultation I've had in the past six months or so.

It's a lifestyle matter and basically up to me if I want to spend a whole day every week getting my blood sunburned. At least for the summer I'm going to stick with every other week.

To me the ripples look oceanic, but they're probably not as bad as I think. And the main issue, my flexibility and my hardening abdomen, is definitely better. So as my mother used to say to me when I looked at my face so close in the mirror that I saw all my flaws, I have to say to myself, "Stop looking so closely then! "

I feel good and am moving well, so I should just sit (or move) with that.

While in Boston I also attended Dana-Farber's Volunteer Appreciation Dinner and enjoyed it very much. Free food and recognition, yay. My contribution is through the One-to-One program, where people like me who have been "there" provide support to those going through it. At the dinner, I sat next to a woman who was in a similar program for breast cancer survivors, only theirs is in person.

She said that after she recovered from treatment, she ran a triathlon. And then another. And a third.

I told her that I had planned on doing one back in 2007 when I relapsed, but now I don't think I have it in me.

I also told her that I recalled my first words when Dan (Dr. DeAngelo) told me I had relapsed.

"But I was going to do a triathlon!"

He said, "We'll get you back on your feet."

I said to myself, "I AM on my feet."

When I told him I felt fine, he said that if not treated with chemotherapy and another transplant, I wouldn't feel fine for long.

That relapse was in July 2007, so it was brewing 10 years ago this month.

The same life but another life.