The Pen is Mightier than the Sword — and Cancer

When faced with a cancer diagnosis, it is natural to feel afraid or experience a loss of control as the disease and its treatments turn life upside down.

Memorial Sloan Kettering Visible Ink writer Rachel Lotus
Rachel Lotus

That’s how Rachel Lotus felt when she received a diagnosis of melanoma, the deadliest form of skin cancer, in April 2013. She was the mother of two very young daughters, Harper and Eden. This was not supposed to happen.

“As is often the case in the years of new motherhood, I had neglected my own body since the birth of my first child in 2009,” Rachel says. But now it was time to make a spate of appointments with various specialists, among them a dermatologist.

The examination was routine, and the doctor was “jovial, fast, and confident,” says Rachel — until she showed him a birthmark. His demeanor abruptly changed. He said he wanted to take a biopsy. About a week later, the diagnosis came back: melanoma.

“In the haze of those first few days, it was my wonderful little sister who took on the daunting task of researching doctors and treatment centers,” Rachel recalls. “She was the one who discovered [Memorial Sloan Kettering surgical oncologist and melanoma specialist] Charlotte Ariyan.”

Rachel’s decision to seek treatment at Memorial Sloan Kettering was also reinforced by “the uniformly positive experiences of several family friends, all of whom were treated for aggressive breast cancer at MSK,” she says.

Good Luck in a Bad-Luck Situation

Dr. Ariyan performed surgery to remove Rachel’s entire birthmark, along with the melanoma, and did a lymph node biopsy to learn if the disease had spread. The pathology report revealed that there had been no lymphatic invasion. Dr. Ariyan had gotten clean surgical margins and said that Rachel was now cancer-free. No further treatment was necessary — her first lucky break.

“Although concerned family and friends advised me not to, I couldn’t resist poking around on the Memorial Sloan Kettering website for information on melanoma,” Rachel says. And in a second stroke of luck, she stumbled upon details of Memorial Sloan Kettering’s Visible Ink program. She knew at once that she wanted to join.

Visible Ink, established in 2008 by Judith Kelman, a successful author of 17 novels and three works of nonfiction, offers patients the opportunity to work one-on-one with a writing professional on a project of their choice. The subject of the work need not be disease-related, and the format can range from a personal essay or letter to a novel in progress, a poem, or a screenplay.

“During treatment, patients have to surrender a lot of personal control to their doctors,” observes Ms. Kelman. “Visible Ink gives them a chance to be in charge. We tell them, ‘This is your story. We’ll help you tell it any way you want.’”

Visible Ink Grows More Visible

Since its 2008 founding, more than 800 patients have participated in Visible Ink, producing more than 35,000 pages of written work. Some pieces are published annually in an anthology compiled by the program; each spring, Visible Ink presents a staged reading of select participants’ work, in which professional actors give voice to patient writings through performances that include music, images, and dance.

As Visible Ink’s team leader, Ms. Kelman matches interested patients with one of the more than 65 mentors — seasoned writers, editors, or teachers — who volunteer their time. Patient and mentor then meet or communicate online or by phone to develop the writing project.

The Best Luck of All

Rachel started working with Adina Wise, a writing mentor who is planning a career in medicine.

“I’d always written,” Rachel says. “As an adolescent to wallow in boy-related angst; as a high school English teacher [in Crown Heights, Brooklyn] to communicate intimately with students about their own work; and as a mother, I wrote to mark the moments with my kids, to remember them as they were and would never be again.”

But this was different. “Talking seriously about my writing with Adina both distracted me and simultaneously validated the most terrifying experience of my life,” says Rachel. “She made me feel comfortable sharing what is easily the rawest, most honest and uninhibited writing I’ve ever done. In some ways, focusing my energy on writing mitigated the fear and turned it into ownership and control. The program has been a lifeline for me, an incredible gift, a bright spot in a dark time, a treasure.”

Rachel and her husband welcomed Max, their third child and first son, in September. She hopes to become a Visible Ink writing mentor in the near future.

To support Visible Ink or to purchase a copy of the latest anthology in which Rachel’s writing appears, please go to the program’s Giving Page.