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."

Celebrating two momentous birthdays

You might think it odd that I thought tomorrow was my birthday while it’s really today, but you might cut me some slack if I reminded you that I have had five birthdays, and it’s hard to keep them straight.

Top, with my donor, Denise Ledvina, in 2011;
bottom, celebrating Marge's 100th birthday this weekend

Today is actually my re-birthday, the 10th anniversary of my fourth stem cell transplant. I didn’t realize it was today until my donor, Denise, sent a happy re-birthday email.

I think I knew at one point that I was off by a day, and I was going to fix it on the blog intro, but then it slipped my mind.

The momentous occasion took place around 9:30 p.m. on Jan. 30, 2009.

My re-birthday dessert

I double checked by looking back at my blog post from the day after the transplant.

It began, “I meant to post yesterday evening at my leisure while awaiting my cells, which I thought were due to arrive at the cell manipulation lab at 9:30 p.m. and would therefore come to me around 11. (Cell manipulation lab sounds so futuristic; I am grateful that in terms of scientific advances, the future is now.) Then Helen, my nurse last night, said they would be ready for actual infusion around 9:30 and that she would begin pre-medicating me at 9 with Ativan and Benadryl, at which point I got all discombobulated and couldn’t eat my dinner, let alone write.

"It’s not that you have to do anything to receive the cells; you just lie there and try to stay calm. But it feels momentous, especially when they hook you up to a monitor tracking your heart rate, blood pressure and oxygen saturation. Of course it also feels enormous because I know how important those cells are to me. The infusion took about 45 minutes and went smoothly most of the way while Helen watched the monitor and me.”

The rest of the evening did not go so smoothly. I wrote,

"The infusion had just about finished when I reacted, either to the cells or to a fever I was going to get anyway. I started shaking vigorously, and my heart rate went up. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who came in quickly. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. Also they put me on oxygen."

Marge's birthday cakes

I was worried that the cells would not take, but as you can see, they did. I wouldn't be here without Denise, the Dana-Farber Cancer Institute, and The Gift of Life Bone Marrow Registry.

On Dec. 25th, 2008, in a post headlined Downhill all the way, I wrote, after I learned about my second relapse, that I thought it was the end of the road. I was thinking I wouldn't see my children finish growing up, wouldn't see my grandchildren.

I wrote about wandering over to 6A, where I would soon live, asking one of my old nurses, Myra, how I could go through chemotherapy and transplant again.

“Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

It’s hard to believe it has been 10 years.

In this Philadelphia Inquirer story , I wrote about how Denise's life-saving donation, through The Gift of Life, was inspired by her desire to help the great jazz saxophonist Michael Brecker.

Another momentous event over the weekend was the celebration, on Sunday, of my Aunt Marge’s 100^th birthday. A group of us gathered in her apartment for a mid-afternoon party. It was a privilege to be there to mark the occasion and to see her looking so pleased, and so great. You can tell from the smiling faces in the photo that everyone was having a good time.

We had gone down to New York on Friday.

On the way, we had to stop at the dentist. I had catastrophized. I thought I had lost a chunk of my tooth and that meant yet another tooth was disintegrating, but I forgot that I had a filling in said front tooth.

So it was just a filling that had fallen out. He replaced it, and off we went.

View from theater seats

I wanted to go down to Little Italy to an old haunt, Puglia’s Restaurant, so we regrouped and off we went. The food was still good and the singing was still fun. We stopped in for a cannoli at the bakery down the block on Hester Street.

The next afternoon, we went to Lincoln Center to see “My FairLady,” starring Laura Benanti as Eliza and Danny Burstein as her father. It was loverly and magical.

On Sunday before Marge's party, there was brunch in Brooklyn and a walk (more loveliness) through Prospect Park.

Since getting back home on Monday, I've been a little under the weather, but not so much so that I didn't have room for my share of my re-birthday dessert with a couple of special people at Food 101 in South Hadley. 

Driving around in cars with ex on our anniversary

On this day 35 years ago...

Today is my wedding anniversary. I spent some of it with Jim (that would be my ex, if you don't know), driving around doing some business involving Katie's car. I drove it down to Enfield and followed him to the Ford dealership, where he left it for a transmission repair that is under warranty.

Then he drove me home. And we argued the whole way.

HA, not really, that is a flashback.

Actually we had a nice drive talking about this and that. We have a lot in common, of course starting with our three wonderful children, but also including love of newspapers (though not all that they have become) and admiration for good writing and annoyance with bad grammar specifically and bad writing and general. Back in the day when we lived in sin in Florence, we would go down to Jake's for breakfast, spread our Sunday newspapers out, and talk about interesting stories for as long as we saw fit to sit there.

Today while Jim was in the dealership, I looked at my phone and saw a tweet that inspired me to ask, when he came out, if he edits everything he reads. He nodded.

Someone was tweeting about myelodysplastic syndrome, or MDS. The writer said, "Here are the symptoms." Instead of following through, he listed the functions of red and white cells and platelets. It was just a tweet, but still, I wanted to reply, hey, if you're going to tell us about symptoms, let's hear them.

(According to the Mayo Clinic, "Myelodysplastic syndromes are a group of disorders caused by poorly formed blood cells or ones that don't work properly." In the beginning there are no symptoms, but later there is a long list of symptoms, such as fatigue, similar to leukemia's. )

I reminded Jim why I'm interested in MDS. It is what the brilliant jazz saxophonist Michael Brecker had before he got the acute myeloid leukemia that led to his death. The drive to find a bone marrow donor for him is how I got my donor, Denise. I wrote about it for the Philadelphia Inquirer, the late musician's hometown newspaper.

So, talking about a pet peeve led to talk about life and death.

We had talked on the phone early in the morning about another kid-related project: getting the old lawnmower serviced so that Joe can use it. About to leave for tennis, I told Jim that he could go into the kitchen and get the garage door opener so he could get the lawnmower out. He was going to put it in the back of my Subaru to get it serviced while I drove Katie's car to tennis.

True confessions: I scurried around the kitchen trying to clean up quickly. It didn't look that bad. But compared to the way he lives, it is a big mess, and I didn't want him to see it. If you asked me why, I wouldn't know exactly what to answer.

Last year I wrote an intense post about my memories of our wedding day. One of Michael Gordon's photos illustrated it. Facebook kindly offered it up today as one of those memories "we care about," so I thought I'd use it again.

I got weepy thinking about all the people from that day who are no longer with us. Notably, of course, my parents. I talked to Katie about the car and other stuff and then we started laughing about a bunch of things and then I forgot to be sad.

How a jazz musician helped save my life

When I met my donor, Denise, in May, I learned of the amazing connection that brought us together.

It all started with the late jazz musician Michael Brecker, who had AML and whose search for a donor led to tens of thousands of people signing up on bone marrow transplant registries.

I wrote a story about it for the Philadelphia Inquirer, because Denise lives on the outskirts and Brecker was born there.

The story ran today under the headline "Musician's campaign sparks a lifesaving bone marrow transplant."

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.