‘Finding their calling’: Cancer caregivers join larger cause after helping loved ones

Hutch News

Finding their calling: Why cancer caregivers join cause

Some family caregivers devote their lives to that larger work, shifting the health care landscape

Sept. 13, 2016
Tambre Leighn and husband, Gary

Tambre Leighn and her late husband, Gary Wissner, on the set of "Wyatt Earp," a film on which he worked.

Courtesy of Tambre Leighn

When Gary died, her life stopped, too. For six years, she was gripped by grief-fueled depression. She’d lost her love, her will, her way. She’d cared for her husband during his cancer treatments. Now, she didn’t care if she took another breath.

“I was in the deep end, really, really stuck,” Tambre Leighn recalled. “But one day, a thought popped into my head: If Gary had been given one more day, would he have wasted it, like I was wasting mine? No, he would not.

“So then I asked: What are you going to do about it? I thought to myself: What really matters to you? What matters to me,” Leighn said, “is helping others.”

The caregiver-turned-widow became a certified life coach, guiding clients to rebuild their own lost dreams. But that wasn’t the end of her transformation. In July, she co-founded Well Beyond This, an online platform providing psychosocial support for caregivers and patients living with the impacts of chronic disease.

Like Leighn, many cancer caregivers are following that same pathway, pulled by that same sense of mission. Inspired by months or years spent helping loved ones amid the disease, some devote their lives to serving as caregiving advocates or volunteers while others work as caregiving professionals, consultants or in-home health aides.

Vanessa Barone

Vanessa Barone

Fred Hutch file photo

“This feels right,” former family caregiver Vanessa Barone said of her chosen career — project manager in the Survivorship Program at Fred Hutchinson Cancer Research Center. Among its many offerings are events and lectures designed for caregivers.

After Barone’s father was diagnosed with multiple myeloma in 2004, she drove him to doctors’ appointments, picked up prescriptions, gave emotional support and helped clean her parents’ home to bolster his immune system, ensuring her mom was not the sole caregiver. Barone had just graduated from college and was living with her parents in Seattle. She remained in that role until her dad died in 2007.

Then, recently, her sister was diagnosed with breast cancer, and Barone joined her mom to support her — a mother of two young kids. Her cancer was diagnosed early and treatment has been successful.

“After my sister was diagnosed, I knew I would come back to cancer. It propelled me to think about what this cancer experience is like for so many people, especially for families. I want to make this experience easier for people. That’s what our program does,” said Barone, who often tweets about caregiving for the Survivorship Program. 

‘He’s the why behind what I do’

Leighn still tears up when she recounts the final three years with her husband — a span marked by deep exhaustion and a deepening love.

Gary Wissner, a Hollywood art director on such films as “Wyatt Earp,” “Se7en” and “Hoffa,” was a driven perfectionist, a New Yorker with a tender heart hidden behind sharp edges.

Following his 1998 diagnosis of Hodgkin lymphoma, the chemotherapy he received began stripping away those edges, his wife recalled. She worked in his art department at the time in the Los Angeles area. He worked nearly throughout the disease. As a patient, Gary asked her to handle his cancer research and medical recordkeeping. 

Gary and Tambre, wedding day

Gary and Tambre, wedding day

Courtesy of Tambre Leighn

“I stepped into the role day one,” Leighn said. “He wanted to be educated. But he wanted that education to be filtered so he wasn’t reading horror stories from online.”

If he had a fever, she documented it. When his blood test results came back, she filed them. New research on lymphoma? She printed it. All the papers were organized in an expansive folder.

“I was keeper of the binder,” Leighn said.

She also took charge as cook and nutritionist. She read about the benefits of lowering sugar in patients’ diets. She recalls standing in a grocery aisle, her anxiety rising with each box she perused as she searched for what she believed to be potentially bad for Gary.

“I was reading these labels on crackers and feeling like I had his life in my hands,” she said. “I remember one day at the store, he wanted soy ice cream. I looked at the label and said, ‘You can if you want but there’s sugar in it.’ He just lost it right there in the aisle.

“It’s hard not to take that personally. But I understood later,” Leighn said. “I was just as exhausted and just as stressed at that point as he was.”

As his symptoms progressed, including coughing and itching through the nights, their sleep mutually suffered. To help boost his energy, Leighn became trained as a Reiki master and massage therapist, healing arts she gave to Gary at home.

“During the first two years, I felt like I wanted to be the only one helping. I think it was because it gave me some sense of control,” Leighn said. “By year three, I realized we needed help.

“When I got so tapped out on resources myself, running in so many directions, wearing so many hats, I was withdrawing emotionally from him just out of sheer exhaustion. I didn’t have the patience I wanted to have for him. I had the recognition that this is a long journey, not one we can do on our own anymore. I got better at asking friends.”

But with each so chronically stressed, overwhelmed and sleep deprived, their relationship was in trouble by the autumn of 2000.

“I didn’t know if I could do it one more day. Would I have to leave to survive? I didn’t want to leave. I loved him. And I gave my word to this man that I would be there no matter what. So, all I said to myself was this: It doesn’t matter about tomorrow, can you stay one more day? And I got up and I did that every day for 30 days.”

Amid that stretch, Gary traveled to an alternative health clinic in Mexico. There, he got sleep and his immune system seemed to rally, she said. In L.A., Leighn rested, too. Three weeks later, Gary returned feeling refreshed. 

“That put everything back on track for us,” she said.

His disease, however, recurred. On Valentine’s Day in 2001, he learned the cancer was terminal. That same day, he went out and bought his wife a bracelet from her favorite jewelry designer then came home and took her to dinner. He never told her the prognosis.

“I’m so glad I followed that inner knowing to just stay one more day because in May, he died,” Leighn said. “But the last six months of our marriage, we had a chance to fall back in love again.”

Health care’s ‘invisible population’

Some 43 million people — more than one in 10 Americans — provided unpaid care to a U.S. adult or a child during parts of 2014 an 2015, according to a research report jointly published by the American Association of Retired Persons, or AARP, and the National Alliance for Caregiving.

By many measures, they are a tired and emotionally overloaded group.

A study published Sept. 6 by the American Society of Clinical Oncology, or ASCO, found that nearly one-quarter to one-third of family caregivers of patients with “high-mortality cancers experience high levels of depression and anxiety symptoms.”

“We’re an invisible population in the health care system until we’re not — until we, ourselves, become a patient,” Leighn said. “If that network goes down it could crush the health care system.”

That’s why former family caregivers now stepping into caregiving careers are crucial to replenishing and bolstering that private army of health workers, said Christopher MacLellan, a former family caregiver who operates the "The Purple Jacket" caregivers blog.

“Family caregivers are changing the landscape in America. Take, for instance, the working family caregiver who advocates for paid time off of work to care for their elderly parent or a disabled spouse,” said MacLellan, author of “What’s the Deal with Caregiving?” and host of “Healing Ties Radio.”

It’s reminiscent of the 1970s, when the U.S. faced a child-care crisis and employers recognized they were losing good employees because workers lacked legal protection to take time off to care for a new baby or sick child, MacLellan said. From that, the Family and Medical Leave Act, or FMLA, became law in 1993.

“Now, changes in FMLA are being proposed through local, state and nationwide legislation to impact the lives of family caregivers,” said MacLellan, a caregiver for his partner, Richard, who was diagnosed with esophageal cancer in 2011. Richard died in 2014.

“This is happening not only because caregivers are sharing their stories, this is happening because family caregiving is taking place in every neighborhood, and in every boardroom,” he said.

Tambre Leighn

Tambre Leighn

Photo by Bo Jungmeyer / Fred Hutch News Service

Wisdom from the trenches

Everything Leighn does these days is informed by what Gary taught her in his illness, by what she learned as his caregiver and her training as a certified coach, she said.

The lessons she imparts to caregivers include:

  • You’re doing the best you can in every moment. If you show up short of patience because you are stressed, or if you feel you’re falling short in other moments, remember it’s not you; it’s the situation.
  • Whatever your loved one is going through is obviously challenging for them, and your challenges, your needs are just as important.
  • If you want to show up with patience and true support over the long run, take care of yourself. It’s an investment in your role as a caregiver and an investment in your loved one.

Seattle Cancer Care Alliance, Fred Hutch’s treatment arm, also offers tips for caregivers as well as regular “caregiver informational lunches.”

Taking care of the caregiver is crucial, as many can end up emotionally paralyzed, feeling hopeless, lost or hurt. Some never recover from that, Leighn said.

“That’s a cost to their families, a cost to their communities and a cost to the country,” she said. “Then, there are others who are able to find their way out of that darkness and transform that into a mission.

“There is great power in turning a challenge into a way to make a difference in the world.”

Are you a cancer caregiver? Tell us about it on Facebook.

Bill Briggs is a Fred Hutch News Service staff writer. Previously, he was a contributing writer for NBCNews.com and TODAY.com, where he was responsible for breaking news and covering trends in business, health and the military. Prior, he was a staff writer for The Denver Post and part of the newspaper's team that earned the 2000 Pulitzer Prize for breaking news 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." Reach him at bbriggs@fredhutch.org.

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