Storyteller recounts struggle with oral cancer

Hutch News

Finding her voice: Storyteller recounts struggle with oral cancer

Eva Grayzel keynotes Hutch survivorship conference nearly two decades after cancer diagnosis

June 1, 2015
Eva Grayzel in Monument Valley

Eva Grayzel in Monument Valley. Her son – a professional photographer who snapped this photo – has become, his mom says, “an expert at capturing life.”

Photo by Jerm Cohen

For each member of Eva Grayzel’s family, the roots of cancer recovery have coiled to unexpected places 17 years later — lingering sobs for the daughter, an artist’s eye for the son, and a fortified love for the husband.

Survivors all, they nonetheless quibble with that delicate word when it’s applied to them. After all, it was Grayzel, they say, who conquered stage 4 oral cancer, diagnosed in 1998. She beat the 15 percent odds to live. She endured life-altering surgery and the radiation blasts that temporarily stole her voice. She weathered the accompanying coughing, choking and drooling.

She’s the one who refused to surrender to the pain. She is the survivor, they say, not them.

But during her keynote speech Saturday at the 2015 Survivorship Conference at Fred Hutch, Grayzel will discuss the cancer survival of her family because they, too, made it out alive. And they, too, are forever changed.

“Everybody forgets about the young children, or even the spouses,” Grayzel said in a phone interview from her home in Easton, Pennsylvania. “When those people in your immediate support network are healthier emotionally, the patient can heal better. 

‘Busy trying to live another day’

“I had a lot of stress while trying to hide what I was experiencing, and we didn’t know how to talk to [the kids] about it,” she added. “Their fears were unaddressed. I would see things in their behavior that I just couldn’t do anything about. I was just too busy trying to live another day.”

Her daughter, Elena, 5 at the time of diagnosis, was filled with rage. Afraid she would “catch” the cancer, Elena refused for two years to kiss her mom. She would kick her mom in the shin for no reason, or just ignore her.

“She was trying to shut me out of her life,” Grayzel recalled. “She didn’t want to commit to loving me.”

Her son, Jeremy, 7 at the time, reacted altogether differently. He refused to leave his mother’s side, declining to roughhouse outside with pals, choosing instead to sit on the floor and play with his toy trucks feet away from his mom.

And Ken, her husband, became more encouraging and more attentive than ever, coaxing her to walk while in the hospital, to move her legs during a post-surgery span when, Grayzel said, “it felt like my head would roll off at the shoulders.” 

Eva Grayzel with her family

Eva Grayzel with her daughter, Elena; her husband, Ken; and her son, Jeremy in Easton, Pennsylvania.

Photo courtesy of the Grayzel family

Mini smooches rekindle old affections

She defied the odds. She rallied and healed. Then, Grayzel had an idea to start to pull her children closer. Tapping their sibling competition, the mother invented a clever game: “The smallest kiss in the world.” The child who could give mom the tiniest peck would win. Those mini smooches helped rekindle  old affections — especially for Elena.

And for the woman now at the epicenter of her family’s emotional legacies, her personal road to restoration ultimately carried her right back to her starting line.

In the 1990s, she crafted unique storytelling skills, using her narratives and verbal patter to motivate a new method of teaching and learning. After completing cancer treatments, and regaining her voice, the stories she began telling took on unprecedented heft.

But as her storytelling career resumed, surreal things also began to unfold inside her family.

Jeremy, today 23, found deep inspiration in his mother’s dogged will. He’ll never forget, he says, reading the ethical will Grayzel penned for her family when her health was still up for grabs. It detailed her future dreams and wishes for her kids, her pride and joy in them, and how she hoped her own values would live on in them.

Leaping above the gravity of her disease

“She wrote her death note. After that, one of the biggest traits I took away was learning how to persevere,” Jeremy said in a phone interview. “She really fought it. She was ready to quit. She actually told a doctor, straight up, she was ready to quit, and that doctor didn’t let her. I take that and relate to it in my life.

“My mom is creative and artistic. If things had gone differently, I’m sure I would be a totally different person,” Jeremy said. That includes the likelihood he may not have pursued photography — an art that already has landed him an image published in The New York Times (his professional byline is Jerm Cohen). In that picture, Grayzel is gleefully leaping off a rock, seeming to transcend the pull of Earth and the gravity of her former disease.

 “Jeremy became,” his mom said, “an expert at capturing life.”

Ken, a radiologist, was asked how his wife’s illness impacted his survivorship. He simply responded:  “There is no medicine more powerful than love.”

But it is Elena, 22, who still openly wears the raw emotions of those dark days 17 years ago. After listening to her mom perform off-Broadway in 2014 about her cancer experience, Elena grabbed Grayzel backstage, hugged her tight and sobbed hard. 

“I think I have a lot of buried feelings from that time,” Elena said. “I was a bad kid when my mom was sick. I was angry. I would kick people and tell them I hated them. I would talk about death all the time. When my mom lectures now, I can’t stop crying.

“It’s something I really want to figure out and conquer.”

Pushing to live for us

There is some happiness in those tears, Elena said. She is thrilled that her mother made it through. But there is a deep layer of guilt starting to flow outward.

“I feel so terrible for treating her so badly when she was sick. At that time in her life, she needed support and love and I was giving her the opposite.

“I feel embarrassed to have the term ‘survivorship’ used with me because I wasn’t positively contributing to her survival,” Elena added. “I was like a negative force. She was the one who was pushing to live for us. I was pushing her away.”

But, for Grayzel it was just the oppostite. She says it was her children who gave her the motivation to persevere.

 

The 2015 Survivorship Conference will be hosted at Fred Hutch’s Seattle campus on June 6. Eva Grayzel will keynote the event. For more information, click here.

Bill Briggs is a former Fred Hutch News Service staff writer. Follow him at @writerdude. Previously, he was a contributing writer for NBCNews.com and TODAY.com, covering breaking news, health and the military. Prior, he was a staff writer for The Denver Post, part of the newspaper's team that earned the Pulitzer Prize for coverage of the Columbine High School massacre. He has authored two books, including "The Third Miracle: an Ordinary Man, a medical Mystery, and a Trial of Faith." 

Solid tumors, such as oral cancers, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.

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