Writing for Her Life | OCRA Heroes
Jane Rubin speaks quickly, with sentences not so much ending but flowing seamlessly into new thoughts and directions. Listening to her talk about her life and her work is like listening to someone try to cram an epic novel into a paragraph. Her interests and hunger for learning know no bounds.
Jane, a 20-year breast cancer survivor, was diagnosed with primary peritoneal cancer ten years ago, despite having had her ovaries removed when she had a mastectomy. She’s never been in remission, but says her doctors have “been able to keep their finger in the dike” with an array of treatments and experimental drugs.
Even while undergoing surgeries and treatment for the past 20 years, she had been working as a healthcare executive until the fall of 2018. It was at that time that her doctor at Memorial Sloan Kettering looked at her and spoke honestly.
“You know you’re probably going to die from this disease, Jane,” her doctor said. “Do what makes you happy. Either think about retiring and enjoy this chapter now, or you can die at your desk.”
“I thought, ‘well, I don’t want to die at my desk,’” Jane recalled. Plus, the fatigue from her medication was making it more difficult to remain at full speed. So she retired.
Write, Jane, write
Jane describes retirement as “a time when you have an empty canvas and you can be whatever you want to be, to dive into whatever you’re good at, learn about whatever warms your heart … like starting college, but without the constraints of having to be employable when you graduate.”
Ten years earlier, while still working full time, Jane had been exploring the field of narrative medicine for her own work in healthcare, where patients write about their experience as a method of self-healing. And when she was diagnosed with ovarian cancer, “the bottom fell out” for her.
“You get this fight or flight reaction, and I just started writing,” she said. “It was sort of like Forrest Gump, you know, ‘run, Forrest, run.’ I was ‘write, Jane, write.”
Her daughter was pregnant with Jane’s first grandchild and so she went to her computer and began to write stories for this baby and any future grandchildren. (Jane now has six grandkids!) It was a book of essays about courage and family lore, such as Jane’s father who was a WWII fighter pilot in the Pacific and her mother who grew up in a crowded Brooklyn apartment. It was all in an effort to control the stories that someone might someday tell about her.
The collection of essays grew, and Jane published the book called “Almost a Princess: My Life as a Two Time Cancer Survivor.” She has donated the proceeds to OCRA.
With one book under her belt, Jane wasn’t done. She was used to a high-pressure career and is someone who always needs a project, so she started a blog about retirement. She uses this platform, and others that she’s created, to raise money for ovarian cancer research. As someone who worked her entire life in healthcare, she’s a big believer in medical research as a lever for change, and so she created a fund in order to have some control in directing the monies raised. But she needed a name for that fund.
“I started thinking about where my genetics came from,” said Jane who learned she was a BRCA gene mutation carrier, “and I traced it through two generations of all men, finally to my great grandmother who died before 1920. The family folklore was that she died of a woman’s disease.”
Jane had to do research through ancestry websites in order to even discover the name of her great grandmother, who was Mathilda. And so the Mathilda Fund was born. Every September, for the past 10 years, Jane has done an appeal to her network to raise money for the Mathilda Fund. So far, she has raised more than $50,000.
A period of discovery
As she began doing research into learning the name of her great grandmother, Jane realized there was an amazing story to tell. She needed to “give Mathilda a world, a life, a last name, children.”
“I wanted to give her an identity, even if it’s fiction,” Jane said.
And so she began writing her next book, which is not simply about her great grandmother, but about immigration, healthcare, the development of neighborhoods, and women’s roles in society.
“I’m really big on traveling,” Jane said, “but for someone with two masters degrees, I knew very little about world history, American history.”
Jane was effusive in sharing what she’s discovered – life in New York City at the beginning of germ theory, Johns Hopkins history of accepting women into its medical school, the dawn of elevators, arsenic in milk, the state of education in the 1800’s, the launch of zippers at the Chicago World’s Fair. Jane’s array of knowledge is endless, which is to be expected when she’s spending 30 hours a week researching and writing.
“If I don’t write regularly,” said Jane, “I feel something very restless going on inside of me.”
The story isn’t finished
When Jane decided to write the book about Mathilda, she gave herself six months to pen the first draft, and then six months to clean it up and look for a publisher.
“I have a lot of black humor at this point. You have to with this disease or you get depressed,” Jane said. “I said to myself, ‘I could probably hang in there a full year.’”
She’s committed to finishing the book and is more than two-thirds done. When asked if there was a part of her that is afraid to get to the end of the story, she emphatically said no. She’s planning on a sequel.
Jane spoke of the undercurrent of anxiety that she used to feel, years ago, when she was home alone. Now, she cherishes the writing time. “I just feel much more attuned to my interests and my body rhythm. My stress level is non-existent.”
Words of wisdom
Getting to this place of calm was not easy at first. But Jane got some helpful advice from an unexpected source: her rabbi. Jane never considered herself religious, but her husband insisted that she speak with the rabbi back when she was diagnosed with breast cancer. The rabbi told Jane to create a mental box that is called the ‘cancer box’ and to put in it everything that she can control about her illness. Get the will updated, make amends with people with whom relationships need to be repaired.
“He said, ‘things that you don’t want to have regrets about, put them away in the box and close the box,’” Jane recalled. “And then he said to just get on with your life.”
That’s the advice she gives to others now who face similar diagnoses. Along with words of wisdom from her husband, who told her to think of life as a tightrope walk: don’t look down.
Jane’s rabbi said one other thing that has become her mantra: “Healing isn’t about a cure. It’s finding peace in yourself. The most important thing to having a good life is to feel peaceful with who you are and where you are in relationship to your universe.”