"If you're going to live, leave behind a legacy"

December 15, 2023.

3:46 pm

I’m sitting in a café with my dad in Boston. We’re seated at a corner table surrounded by windows, and I know the sun is beginning to set from the orange light washing over the brick building across the street. Two window washers are hanging from thin blue ropes. There are no clouds in the sky but having spent a lifetime in this city I can tell the air is cold. More than cold, probably. It’s a typical, fridged winter day in Boston.

Except today is far from typical. The café with the wall of windows and obscured view of the setting sun is inside the Dana Farber Cancer Institute.

My mom has breast cancer and she’s having a lumpectomy as I write this.

Her mom, my grandmother, was diagnosed with breast cancer when my mom was just 14 years old. She died four years later when my mom was a freshman in college. Since then, breast cancer has been my mother’s biggest fear and deepest worry. She gets a mammogram religiously every year and dreads the results. She flinches at every call back, every inkling that something could be wrong.

It’s as if she’s always known she’d fight the same fight her own mom did all those years ago.

And now here we are. And here I am considering this full-circle journey for the very first time. Here I am asking myself “how is this happening?”

A few weeks ago, when I heard her say the words “I have breast cancer,” I felt nothing at first. I just listened and then asked a lot of questions. But I felt nothing.

I know sadness and fear and worry and rage. Where were they? I remember wanting to just flip a switch to turn my feelings back on because this numb nothingness was so unfamiliar and far more unsettling.

But a few hours later, the feelings came like a title wave. On the highway in the pouring rain in rush hour traffic.

I pulled my car into the breakdown lane.

Breathe.

In through your nose.

1234

Out through your mouth.

Say what you see.

Blue car.

Water bottle.

Chapstick.

Rain.

I told my mom the next day about the panic attack. We agreed that the only way we’d get through the coming months was with a no-bullshit approach. I wasn’t going to shield her from my feelings or worries and she wasn’t going to shield me from hers. We were in this together.

I’ve always known the true depths of my mom’s strength – I’ve witnessed it my whole life. But it wasn’t until recently that I really put it all together and saw how and where she got that strength.

When my mom lost her own mom at 18, she had so many questions. She was so alone in so many ways. She was an only child of divorced parents, so not only was she left without a mom, but she was alone in her grief, too.

Since then, she’s spent her life trying to gather little bits of knowledge and lessons from other women and mothers in hopes of learning everything her own mom didn’t have time to teach her.

In 1995 she created a show called Exceptional Women: radio portraits of women who will inspire you. She interviewed hundreds of women from every walk of life. From super stars to backyard heroes - it was as if each interview was a piece of her puzzle.

In 1998, my mom interviewed a woman named Julie Goldman. Julie was diagnosed with metastatic breast cancer at 32. By 35, she was in hospice care, but not for long. She then spent the remaining two years of her life dedicated to the pursuit of teaching doctors how the world is viewed through the eyes of a terminally ill person. She left a legacy of protocols that oncologists still use today in their care.

But the gift she left my mom was far greater.

As my mom visited with Julie in hospice a few days before she died, my mom asked, “Will you be Colleen’s guardian angel? I’m not sure why I’m asking you this, I just feel like I’m going to need your help with her.”

“Well,” Julie said, “I’m Jewish, so I don’t really know how the whole guardian angel thing works, but I’ll see what I can do.”

Julie Goldman

My mom didn’t tell me about her talk with Julie until a few years later. I was recovering from a near-fatal car accident during my sophomore year of college. It was several months after the accident and I was still working through physical therapy, memory loss, long-term neurological issues, and a slew of other lingering effects. One warm summer evening, my mom asked me if I had any memories from the accident. I told her I only had a few.

“The one that’s the clearest isn’t really a memory – I’m not even sure how to explain it,” I said. “I’m somewhere else, but I’m looking down on the car – before the police or EMTs arrived – It’s like I’m watching a movie. I can see myself, unconscious in the car and everything is quiet and it’s dark outside.  I know I’m not dead, but I’m not alive either. I’m just sort of in between and someone is with me holding me there. I can’t see who it is, it’s just a feeling. I know that probably sounds crazy.”

“No,” she said. “That was Julie with you.”   

Julie taught my mom about the beauty of friendship – how it can heal you and protect you in life and in death. She taught her about what it really means to use your time on earth wisely and for good.

A few years later, my mom met and interviewed Dr. Carolyn Kaelin. Carolyn was a world-renowned surgical oncologist and breast cancer researcher. I don’t know that I’d ever be able to adequately put into words how accomplished Carolyn was. Not just in her career, but as a human being. I feel so honored to have known her. She’s one of those people who left a truly awe-inspiring mark on this world.

At the age of 34, she became the founding director of the Comprehensive Breast Health Center at Brigham & Women’s Hospital - the youngest woman ever to hold a title of that caliber. In 2003, Carolyn was diagnosed with breast cancer. She underwent a mastectomy and a rare complication from her treatment prevented her from returning to her surgical practice. So, she dove deeper into her research, wrote two books and developed an exercise-focused breast cancer recovery program for the YMCA.

Dr. Carolyn Kaelin

In 2010 Carolyn was diagnosed with brain cancer, unrelated to her prior breast cancer diagnosis. She underwent two brain surgeries, both requiring her to relearn how to walk, along with extensive other rehabilitation. I remember getting her RSVP to my wedding. My mom told me that Carolyn announced to her care team this was her goal date: “November 12, 2011. I want to dance at this wedding,” she said.

And she did. It was a slow dance, and a brief one at that, but it was a dance. I remember going over to say hello to her during our cocktail reception – she was sitting at a corner high-top table with her husband, Bill and she was glowing. Her hair was styled in a chic pixie cut and I remember thinking she looked like an angel.

She was.

She is.

Carolyn died on July 28, 2015. She was survived by her husband, Bill, her daughter Kathryn-Grace and her son Tripp.

I distinctly remember my mom’s original Exceptional Women interview of Carolyn. I remember thinking she was a real-life breast cancer superhero. And then I remember sitting at her funeral thinking “now what? How does the world lose a person like this? What about all the women who still need her?”

At the time I didn’t understand the true concept of legacy. I didn’t realize the magnitude of the contributions she’d already made to the medical world. I didn’t realize how Carolyn’s work would live on long after she was gone. I didn’t see it all clearly until my own mom was diagnosed with breast cancer this past year.

The afternoon she got her diagnosis, I sat with her and my dad as she called Bill Kaelin, Carolyn’s husband. We were all asking ourselves what Carolyn would do and Bill was the one who had the answers.

Bill is the recipient of the 2019 Nobel Prize in medicine and a physician-scientist. He’s also a professor of medicine at Harvard Medical School and at Dana Farber Cancer Institute.  Long story short: he knew how to answer all our questions. More importantly, he told us which doctors to request. He recommended his close friend Hal to be my mom’s oncologist and told us that he was a good friend and colleague of Carolyn’s, too. And then he said “you’ll want Esther as your surgeon. She was trained by Carolyn. She’s the best.”

So there we were – we had a plan, we had an army and we had Carolyn’s legacy living on right before our eyes. Carolyn taught my mom about bravery, perseverance and grace.

Today my mom is officially cancer free.

When my grandmother died of breast cancer all those years ago, my mom described the loss as feeling like she was navigating the world without a compass.

They say it takes a village to raise a child…..and in this case my mom had to find her village without a compass.

But she did it.

Julie and Carolyn are only two of the hundreds of women who have made up my mother’s village. Each one of them carrying a story of strength and fortitude. Each one of them exceptional woman with something to pass along to my mom, and then to me. And in return she celebrated them by telling their stories, their legacies. She didn’t just ask for their help or pilfer their wisdom; she soaked up everything she could from them with gratitude and grace.

She showed them that their lives mattered, and their work deserved to be honored and shining in the spotlight. And in turn, they showed up for her, they loved her, they became the village that raised a motherless child.

They healed her in their life and in their death and I am eternally grateful.

Mom & Me