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.