On being a bone marrow donor... 'Tis the season

 

 HALLIE EPHRON: On the day after Thanksgiving, "How to Save a Life,” an op-ed piece that my sister Delia Ephron wrote, was published in The New York Times. In it she shared her experience receiving the bone marrow donation that cured her of acute myeloid leukemia (AML is a blood cancer, a disease of thee marrow which produces your body's blood supply). 

The same the disease killed my sister Nora ten years ago. AML also killed my dear husband Jerry. He had a transplant. It gave him a fighting chance, but it wasn’t enough.

Delia remembers facing frightening odds when she was diagnosed and given four months to live. A bone marrow transplant held out the only hope.

She says, “A bone-marrow transplant, for the patient, is a grueling procedure that involves wiping the diseased marrow clean with powerful chemotherapy and transfusing stem cells from a healthy person who is genetically matched. But for the person who makes the donation, it is not difficult."

Her essay describes how Be the Match and organizations like it (there are more than 50 worldwide, and they all cooperate) enable people to register to become a marrow donor.

Delia says, “You can register and never get called, or one day, with thrilling unexpectedness, you will get a phone call, as my donor Casey did, to tell you that there is an extremely sick person waiting for you to save his or her life.” The prognosis is best when the donor is young, and doctors are most likely to request a donor under the age of 34.

To register, visit the web site (BeTheMatch.org), complete a brief form, and receive a kit in the mail. Swab the inside of your mouth as instructed and return the swab in the envelope provided. It's super simple

Donors aren’t paid, but organizations like Be the Match cover all costs, reimburse for lost wages or expenses during donations, and arrange for everything like a checkup to make sure donors are healthy.

Since the Covid pandemic began in 2020, the number of people who have registered but then refused to donate when called has risen. It's unfortunate but understandable. But as a result, right now there's even more of an urgent need.

I’m sharing this information in the hopes that in this season of giving, you can share it with someone who might give the gift of life to a stranger.

Quoting my sister: “During the holidays, if you are under 40, register to be a blood stem cell donor. If you are having a baby, donate your umbilical cord to a cord blood bank. Talk to your OB — umbilical cords, rich with lifesaving stem cells, are otherwise, as one of my doctors put it, thrown in the trash. 

"Give these gifts to a stranger. That’s the holiday spirit. If you have children or grandchildren in their 20s or 30s, when they ask you what you want for a present, tell them that you want them to register. Tell them that, for the holidays, you want them to save a life.”

Left on Tenth, my sister Delia Ephron's story of survival

 

HALLIE EPHRON: As so many of you know, I come from a family of writers. If you’d told me five years ago that today we’d be celebrating the publication of my sister Delia’s memoir, LEFT ON TENTH: A SECOND CHANCE AT LIFE, I’d have had a hard time believing.

She wrote this amazing book after struggling through several years of heartbreak. Delia lost our  sister (Nora), then she lost her husband (Jerome Kass), both to cancer.

Several months after her husband’s death, Delia decided to make one small change in her life: she shut down his landline. Which crashed her internet.

Verizon, her phone and internet provider, was less than helpful. After frustrating hours in HOLD hell, Verizon disconnected the phone all right, but also disconnected her DSL. Which led to more hours…

She channeled her frustration the way we Ephron girls were brought up to do: in writing. Her essay, “Love and Hate on Hold with Verizon,” ran on the op-ed page of the New York Times.

Here’s a taste:

This all began because I disconnected one of my two landlines. I don’t need two landlines now that I don’t have Jerry. This is the only change I have attempted to make in my entire life since my husband died, and it has obviously not gone well.

Read the piece to find out what happened after that.

The essay caught the attention of Peter, a Bay Area psychiatrist, who emailed her to commiserate. Recently widowed himself, he reminded her that they had shared a few dates fifty-four years earlier, fixed up by Nora.

Delia did not remember him, but after several weeks of exchanging emails and sixties folk songs, he flew east to see her. They fell crazy, utterly, in love.

End of story? Not.
Four months later Delia was diagnosed with AML, a fierce leukemia.

What happened next? Well, that's what Left on Tenth is about. In the telling, she’ll have you caroming us between tears and laughter as she recounts navigating the suicidal lows of enduring cutting-edge treatment, and the giddy highs of a second chance at love.

The reviews have been nothing short of remarkable. And I’m thrilled to host Delia today on Jungle Red Writers.

Delia, you and Nora wrote one of the most delicious romantic comedies of all time – You’ve Got Mail – but I wonder if you ever imagined that you’ be starring in a real life one?

DELIA EPHRON: I surely did not. I wrote that NYT piece about my internet crashing while trying to disconnect my late husband’s phone. Peter emailed and our connection was instant.

But of course it wasn’t a romantic comedy because 4 months later, in the midst of this heady romance, I got deathly ill.

HALLIE: Your illness came at such a dark time. So much loss, compounded by your own often-fatal illness. How did you find the resources to write about your experiences?

DELIA: I thought I would never write about it. I miraculously (and I don’t use that word lightly) survived an experimental bone marrow transplant – was in the hospital 100 days. I was a year recovering, actually two years, before I could believe it or feel utterly myself. And didn’t think at all of writing, not just this story, but ever again.

And then, one day, I thought, more happened to me in four years … well, I was a writer again and I knew I had an extraordinary story to tell.

HALLIE: Nora died of AML and you survived. And you say that throughout your treatment you’d repeat to yourself, “You are not your sister.” And yet in many ways you ARE so like her.

The very fact that you could write this book in the wake of it all speaks volumes, to me at least. And that you could make it, at times at least, funny. What do you think?

DELIA: The doctors – Dr. Roboz and my friend, Dr. Jon LaPook, both said to me, “You are not your sister.” What they meant was, my leukemia, under a microscope, was not her leukemia, even though we both had the same type, AML. They were willing me to believe I could survive.

I wrote a lot about that in the book. That was difficult for me to believe because it felt like betrayal.

There are four of us sisters (Nora, you, me, and Amy) and Nora was the oldest. The pressure on us all to be writers was fierce. I was second, and I tried to do everything she did, although she was going around the track so fast, I couldn’t keep up. Essentially, Nora was extoverted, and I am not. We wrote well together, but we were not really alike.

Writing is your fingerprint. Writing taught me who I am.

HALLIE: That's so true for me, too. Writing helps me figure out what I think. Something about the process of putting words on the page… I’m only starting to be ready to do that hard work again.

I hope this makes you want to read Delia’s book. It’s extraordinary. She’ll be checking in today to answer your questions… If we’re lucky, she’ll talk about where the title (LEFT ON TENTH) came from.

And hear Delia in conversation with Scott Simon about the book on NPR.