In Boston, stepping up for life

Finishing first lap, Chestnut Hill Reservoir

My sister drove me to so many doctor visits and hospital trips that I lost count, so it was a great counterpoint for her to drive me to something super fun and celebratory: The Steps for Life 5K to benefit The Gift of Life, the organization that got me my bone marrow donor.

I drove to Newton last night after playing two hours of tennis. I'm still a little under the weather – this cough/cold that's going around is a long one – but I wanted to do it. I haven't been running very much but thought I could do 3.1 miles, and I wanted to do my small part in raising some money and showing up to honor The Gift of Life.

This morning around 8:30 or so, we went over to the Chestnut Hill Reservoir, where I got my number, shirt, and an orange ribbon reading "Recipient."

Over at the Dana-Farber booth (they were a sponsor), it was exciting to meet two women who work in the department that finds matches for patients. I said hello to Dr. Corey Cutler, Dana-Farber's director of stem cell transplantation, and a speaker at the event. I told someone else the story of how Denise ended up donating for me after getting swabbed at to a donor drive for the late, great jazz saxophonist Michael Brecker, who, sadly, could not find a match.

At an emotional ceremony on a makeshift stage, a recipient and donor met for the first time. Then donors and recipients, including me, went up to join them. I was afraid I might recreate my fall UP the stairs in the Paris Metro and trip going up to the stage but I hopped right on up.

I had been watching the forecast and expecting rain, but it was just cloudy and cold, with a little wind. We did group warm-ups to music – lunges and jumping jacks and waving our arms around, very festive  – and then the runners and walkers (and some dogs with their people) went up to the track so we could go twice around the reservoir.

I can't say I really trained for this event, but I figured that 3.1 miles would not be so bad. The first time around was pretty easy, but I was feeling it the second time around. I thought of walking for a couple of steps, but my mind, and my momentum, was attached to my slow jog. I'm kind of strict with myself. "You didn't walk when you had leukemia during a 10K, and you're not going to walk when you DON'T have leukemia and are going half that distance." Plus, the tiny bit of momentum kept me from walking; it was easier to keep doing my so-called run.

The finish line, around the bend, looked far away. I'm glad that Diane took my photo after my first time around. She also took one when I finished, but I deleted it from her phone. (The equivalent of how our mother used to rip up the photos of herself that she didn't like.) Note to self: Next time take off the transitional glasses that get so dark outside that I look like a Blues Brother.

I was kind of bent over and not looking so great when I finished. I motioned for Diane to come over so I could hold onto her shoulder while we walked away from the track so I could get some water and a very welcome bagel with cream cheese. That Diane sure has a good shoulder, literally and figuratively.

I felt like I needed to stretch out my back, so I found a little piece of grass and lay down. A Git of Life staffer came over and asked if I was OK. I said yes, just stretching. He asked if he could help me up, and, well, maybe you could guess that I said no thanks.

If I do another 5K, I think maybe I'll practice a little more. I miss the way I used to feel on those long runs, but the neuropathy in my feet makes them harder to do.

When I lamented my slower pace these days, Diane pointed out that I'm the only four-time stem cell recipient who played two hours of tennis, drove two hours to Boston and then ran three miles. As our father would say, "Good clear thinking."

Two seders and an Easter dinner

Callen and Nell

I was a little under the weather leading up to Friday night, and I thought of not going to the home of my extended family, the Chipkins, for the first seder, but I rallied. We have shared many joyful celebrations and one of the worst nights of our lives. At the seder, someone almost snuck in the name of the Orange Monster (this is a hint regarding that bad night, in 2016,) but a murmur went up in the group to get us back on course. I'm always glad to be with this warm, welcoming family. It's a time of being grateful for many things, and the next day in South Hadley, we were all grateful that Joe took over in the kitchen at our seder after I got things going, because who knows, I might still be serving the potatoes. We have a wonderful tradition: Diane leading a beautiful seder, with contemporary tie-ins, and such must-haves as David's pot roast and Bob's booming baritone version of "Let my People Go." Having Nell and Callen "play" the piano was a joy. Playing with them was a joy. Even being able to get down on the floor and up from it is a joy, and in the theme of the on-and-off 10-year retrospective, here's a post about how I couldn't have done it when I was in the hospital, needing platelets and blood after one of many trips with Joe to the ER. It was a little less than four months after my fourth transplant. I had a fever and was worried about what might be coming down The Pike this time. It turned out to be another fungal ball. I wrote in this post, that after a little walk, "I got dizzy and felt like I might faint. I knew that my blood pressure had fallen. I made it back to my room, and when the nurse took my pressure (standing) it was 65/54. The episode earned me five hours of IV fluids."

Being under the weather now, as compared to then, is obviously no comparison. I've been dragging my feet, literally and figuratively, about doing The Gift of Life 5K in Boston this coming Sunday. Dragging literally, because it's hard to shake off the neuropathy-induced lead boot feeling, and figuratively, because I only signed up today. The Gift of Life is the organization that got me my donor; I signed up for the run last year but at the last minute went to Costa Rica, so when they asked again this year, it seemed like an important thing to do. To make a donation, please click here.

I haven't been running very much and want to get in some little runs before I do it. Yesterday I went a little less than three miles (OK, 2.7), then came back and jumped in the shower so that I could be ready for my next activity, a trip to Framingham for Easter dinner at the home of my Partner/Boyfriend/Honey/Beau's son. Could we take a vote? An Easter egg hunt awaited us. When we got back, we took Maddie for a nice walk.

Today I'm dragging and seem to have neglected the part about finishing the cleanup. Tomorrow is another day...

Earlier in the week, it was AML World Awareness Day, and I wrote about more than 15 years of knowing more than I never wanted to know on the topic.

Fun and running in the Florida sun

Hollywood Beach

When #WorldCancerDay came around on Saturday, the second day of my mini-vacation to Florida, I thought about how I don't need a day to mark it. A lot of people were tweeting with the hashtag, but although some aspect of it is never far from my mind, I couldn't think of anything particular I wanted to say. My pinned Tweet says it all.

I did do one related thing: Talk to someone from the Gift of Life, the bone marrow donor program that found Denise for me. I said I would register for their Boston 5K this spring and write my story for them. I've done this kind of thing many times: "XX years ago, so and so couldn't imagine running the xx-mile race, but she is training for it now, thanks to such and such organization that made it possible."

In my case that would be, "Eight years ago I needed oxygen after struggling to walk just half the length of a nurses' station, but on April 30 I'll be running...."

Being in Florida for five sunny days gave me the chance to run an easy three miles on flat palm-tree-lined streets. On my last day I added that same distance in walking because (ahem), when I got back to Deb's place and reached into my pocket, I couldn't find the key. Not wanting to bother her during her busy day, I decided to retrace my steps. First I needed water. Unless I was going to drink it from the pool, I would have to knock on a door that had some sound of life coming from the other side.

Some nice people from Quebec took care of me. A woman in the kitchen explained to her husband, "Elle a perdu sa cle´" to which I added, in my best high school French as I drank the water, "Je suis un idiot."

With Deb at Margaretaville

I retraced my steps but came back empty-handed and called Deb. She met me in the hall. Before opening the door, she looked me over and asked, "What's that in your pocket?" Duh. The key. Which had slipped down deep into my pocket like the part in your coat that catches your change. She pulled out a few dog treats and unearthed the key.

"What am I going to do with you?" she asked. "Send you home, I guess," she replied. I was going home anyway. Although feeling silly, I at least felt like I had enough exercise that day.

Her condo is a short distance from Hollywood Beach, where we had walked the first night on the broadwalk (not a boardwalk because it isn't made of boards) and taken a quick tour of the glitzy lobby of Jimmy Buffet's Margaretaville.

The beach is crowded, but but you can still find your spot. I covered up from head to almost-toe because that's the way it is for me now post-squamous cell. It was wonderful anyway, and I would have liked to bottle the sea air.

I floated in the blue-tinged ocean that was almost as calm as a bay. Lying on my back, I thought of my mother, who used to float that way and put her hands behind her head and close her eyes. Hi Mom, I said, looking at the sky.

With Nan at Fairchild Gardens

The next day, when we drove down and found a spot better than Deb had expected, I also talked to my father, who I like to think guided me there. I tweeted my remembrance of the kids saying "Thank you grandpa" after he had died and we found the perfect spot in front of the apartment when visiting my mother. (This all stems from the lengths to which we could discuss finding a spot "that's good for tomorrow.")

In addition, I had a great but too-short visit with my high school friend Nan. She took me to beautiful Fairchild Tropical Botanic Garden, where we walked around, had lunch, and caught up with our news. It was also fun to meet her children. (And we got this old how?) A dancer and personal trainer, Nan is very Zen. I asked if some of that could rub off on me. It was hard to totally avoid talking about The Thing that has overtaken Washington, but at least we circled back to the good stuff.

I also said I wanted to go to that waterfall where we've seen photographs of her with her son and daughter.

She said I'd have to go to Hawaii for that.

"Settling" for Florida wasn't too hard to do.

I write as I look out my window at the blizzard.

Meeting my donor

Me and my donor, Denise Ledvina

How do you thank someone for saving your life?

I posed that question when I met Denise, my donor, while I was in Philadelphia.

"Thank you" seems insufficient. But that's what I said, repeatedly, and Denise thanked me too.

"How many times do you get to say that you saved someone's life?" she asked.

We met for coffee when I was in her neck of the woods for our big 10-mile race (my six-miler). My high school friend Tami came with me, because, as I wrote earlier, Denise happens to be in Tami's book group, and they live near each other in South Jersey, close to Philadelphia.

Denise and I have e-mailed since we first learned each others' identity a year after my transplant on Jan. 31, 2009. Some people travel far to meet their donors, but when you consider the world-wide reach of the National Marrow Donor Program (NMDP), we are practically in each others' back yard.

We're about five hours apart, but only about an hour and a half from New York, which I consider my second home. I had stopped in New York on my way to Philly, so Denise was just a short bus ride away.

She actually registered through The Gift of Life, an associate registry of the NMDP, in a donor drive for the late Michael Brecker, an internationally-known Philadelphia jazz musician who died of leukemia in 2007 after failing to find a donor. Once you register, your name and information stay on the list, which is how she ended up with me.

I learned of our connection when I first told my friends that I had learned my donor's name. That's when Tami exclaimed, "I know her!" (We are trained to almost always use the word "said," but in this case, she really did "exclaim.")

We have so many things in common that I felt like I already knew her. And of course now that her strong healthy cells have populated my bone marrow, in a way I am her. We hugged and smiled and teared up and then, along with Tami, just chatted away.

We're about the same age and share a similar background. We both also have a history of the crazy-making plantar fasciitis. Mine had been quiet for years until recently, and I joked with her that maybe she gave it back to me with her cells. Bad joke. Sorry.

I can see that she is a strong woman. And I am so grateful that I carry her strong cells within me.