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.

Monday, May 29, 2017

Happy Anniversary to my Ex-Husband

Hitched at Tappan Hill, Tarrytown NY. Michael Gordon photo
Yesterday when walking the dog, I thought there must be a card saying Happy Anniversary to My Ex.

I'm sure I could look up an appropriate card for marking the occasion of our wedding on May 29, 1983. Back at the Union-News, I did a story on Hallmark cards for every odd occasion.

I didn't look for one, so today, on what would be our 34th anniversary, here is what I would say.

We made three wonderful children.

Out of the 13 years that we were married, most were good.

When I first saw you in the Transcript-Telegram newsroom, you looked like you had come out of a movie: cigarette dangling from your mouth, your fingers banging on the typewriter, you prowling the newsroom on deadline, wise-cracker, joke-teller, prankster.

The time I had to be the Friday night news editor, and you rigged the phone so I couldn't hear a voice when you called me from the back of the newsroom, and I said, HELLO, hello, and Greg Pearson had to clue me in. The time you called my desk in the People section and said in a high-pitched voice, after I had reviewed a play at the Mount Holyoke College Summer Theater, that Sy Becker did a much better job than I did.

(Could you actually have stomped on the paper when someone made a big mistake, or am I misremembering? Did I really drive by the paper to see if your red truck was still there and then wander back in innocently to ask you something or other?)

I tell people I fell in love with your editing, and it is a little bit true. I thought it was magical.

Those Thursday night after-work outings at the hole-in-the-wall bar at the K-Mart plaza where you and Matt told stories about the old days at the old downtown plant and then the two of us went to the bar at the Yankee Pedlar and told more stories, followed by the Friday mornings getting to work by 7 a.m. Bleary eyed.

The afternoons and evenings at the old College Inn, watching traffic go by or cheering during college basketball games.

You lightened me up.

You engineered a trip to Newfoundland. We went camping!

You calmed me down when a bear was prowling around our tent.

Joe, Ben & Katie, a while back at Tailgate Picnic
You held my hand when I was in labor.

You were and are a good father.

You comforted me when I got leukemia. You were the first person I called, crying hysterically, after my in-take appointment at Dana-Farber. You said to take it one step at a time, and you promised to take care of the kids.

You kept them sane after moving into the house when I was in treatment. You made them feel secure, keeping their routines intact. You talked to their teachers.

You made funny signs: "The dining room table is not a laundry-folding station."

You stayed an extra year when I was recovering.

When you were scheduled to go to the Cape with the kids, you took me along because I could not be left home alone. You gave me the best room. You called me Ronnette.

At Christmas, when I could not have a real tree in the house, you got an artificial one.

You made good meals. ("No offense," one of the male children said, "but we ate better when Dad was here.")

When I relapsed twice, you stepped up again, took me on vacation again.

You helped me get better again. And again.

You did a great job staining the unfinished furniture (desk and sideboard) that we bought together long after we had broken up. We were getting along so nicely that the salespeople thought we were married.

When my dining room ceiling fixture blew a gasket and I couldn't remember where we bought it a gazillion years ago, I sent you an email and you sent one right back with places to order, and photos and descriptions, and your choice for which ones would look best.

We've had a lot of divorced anniversaries, and I don't know why this one is making me especially emotional.

I think it's because after a big bad breakup, you focus a lot on the negative.

In thinking of the positive, I'm almost brought to tears, because it wasn't supposed to be this way.

Still, on our anniversary it's good to remember the good times.      

Wednesday, May 24, 2017

Sliced finger gets in way of slicing on court

Today is a tennis day, but I couldn't go because I was being nice to the dog.

Specifically, when cleaning out the fridge for trash day, I decided to slice some chicken off the bone for Maddie.

The knife was in good shape because I had sharpened it for Passover. So it made a nice cut when I missed and sliced right into my index finger on my left hand. I bandaged it and wrapped tape around it but it continued to bleed. I thought briefly of walking down to the fire station – there is just one house between us – but thought better of it and called Fire District 2. I stressed that it wasn't an emergency.

The assistant fire chief, Todd Calkins, arrived in a jiff with an EMT. They went into their "boo-boo kit" (their word) and bandaged it and wrapped it tightly. They said it looked like it might need stitches. They also said I should look into whether my tetanus shot was up-to-date.

Todd recalled the day when I called the fire department in a panic when I came home from work and saw smoke pouring out of the nearly-completed addition. I was pregnant with Katie. I had just picked up Ben and Joe when I saw it. I ran in and got my dog-three-times-removed, our big black Lab, Winnie. I later learned that a carpenter had flicked an ash into a barrel. Apparently in a few minutes, the old house would have burst into flames.

Todd said he had two other houses in a similar state that same night.

They said they would take me to the ER. I said I would figure it out.

The bleeding stopped. It only hurt a little. Thus, I dilly-dallied.

I am still trying to get organized after the informative and productive but overwhelming writers' conference I went to earlier this month (May 5-6), presented by the American Society of Journalists and Authors. It was my first time as a member. I had gone last year as a non-member and found it so beneficial that I decided to apply for membership, got in, and got psyched for the full benefit of two days as opposed to the general public's one day.

Loaded down w/ bags at #ASJA2017NY
I realized that I didn't write a blog post about it. All I did was put a photo on FB. I was too busy BEING THERE NOW. Short version is that it offered the camaraderie that I miss from my newspaper days. I learned a lot from the many sessions, made connections with editors and got cards from editors with whom I didn't have a chance to speak, got story ideas, felt supported, enjoyed the conference-supplied Starbucks coffee, and even had a chance to sneak in a visit with Aunt Marge and (cousin) Jeanne.

Even before I left the conference, I took some time to send follow-up emails to editors. I did more of that when I came home and thought about stories I would like to write or pitch. I guess germinating is all part of working.

But I've been feeling a little like some of us tennis players feel after the Districts, the USTA tournament up a level from the local leagues.

You expend so much anticipatory energy – and so much energy there – that for a while afterwards you need a little break from tennis. Thought bubble: "Don't let me ever look at a tennis ball again! Well, maybe not never ever."

Back to that slightly sliced finger. Somewhere around 3 today, I called my internist’s office to see about the tetanus shot. Turns out I had one two years ago. They don’t do stitches, so the nurse suggested Urgent Care. When I got to the one on Memorial Drive in Chicopee, only a couple of people were before me, while earlier in the day it was busier. So by lingering at home, I had saved myself waiting room time.

A physician’s assistant took off the bandaid. It didn’t look bad enough to need stitches. Instead, she used skin glue. The application process made it hurt more than when I got there.

Since it’s the left hand, hopefully it will be better in the morning and I can play a little tennis. I have a lesson that I don’t want to miss.

Wednesday, May 17, 2017

Outdoor tennis and new plan (re the drivers)

First day of tennis at the Canoe Club.

While most dress down to go outside, I am dressing UP. Not with fancy clothes but with sun protection shirt, legging to my ankles, and, if I can find them, my sun protection gloves.

When I get to Dana-Farber for ECP, aka the light treatment aka the internal sunburn, today, the first thing that Ellen, the PA, will ask, is, "Did you play tennis today?" Maybe I won't see her, though, because since I now go an our later, at 4, she has often already left.

The long-sleeved shirt that I got from Coolibar is supposed to breathe, but it doesn't, so if anyone knows a good sun protection company or a specific shirt that is not so uncomfortable, please let me know.

As I wrote in my recent Healthline story describing my life with chronic symptoms, going back and forth to Boston is forever going to be a part of my life.

On my last visit two weeks ago, I enjoyed the luxury of having a friend take me.

It is not going to happen every time. I was grateful when, in the acute phase, people drove me. And I understand why it's not happening now when it's no longer a matter of life or death. It sucks up just about a whole day. If I could cope with all the medical drama, you would have thought I would have learned to cope with the driving drama. There's still time.

Today I have a double header, and two weeks from now, the same thing.

That will mean a lot of drivers. One today to Dana-Farber through MART (the source of most of the crazy drivers) , another, through The Ride, to Diane and David's, then The Ride again to my dermatology appointment tomorrow, then a different driver back home tomorrow.

The next time I go, the second part of the double header will be a checkup with Dr. Alyea.

I am not going to engage.

I have already packed my headphones and will just put them on and listen to something on my phone if any of them act up.

Stay tuned.