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Sharing Our Story for National Family Caregivers Month

Sharing Our Story for National Family Caregivers Month
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Published on November 20, 2020

Honoring Bonnie Beckett and Sharing Advice for Caregivers

BonnieFall Colors“Have you seen the movie ‘Stranger than Fiction?’” Bill Beckett asked me. I told him I had not. As he went on to explain the premise of the movie, my heart broke for the soft-spoken man with the kind brown eyes I saw on my computer screen. We were discussing life and loss just three weeks after Bill’s wife Bonnie passed away from cancer.

Bill explained how Will Ferrell’s character in the movie faced his impending death with courage and then tied the story back to Bonnie.

“She didn’t want to die not because she didn’t want to die,” he said. “She didn’t want to die because she didn’t want to hurt the people she loved.” After a long pause to stifle his tears, he added, “I’m not here to talk about God or religion, but isn’t that the kind of person you want to keep alive?”

A Second Chance at Love BillBonnieWedding

Bill and Bonnie met in an online chat room in the early 1990s. They connected immediately and discovered they had a lot in common, including first marriages that ended in divorce and hope for a second chance at love. After getting to know each other online, they made plans to meet in person.  

“We met at a park and we walked,” Bill said. “That went on for months and months. We would walk and talk for hours.” Before long they realized they had fallen in love, and they decided to get married. Bill was thrilled to become a dad to Bonnie’s two boys, and a few years later they had a third son together. Life was good.

“We would always say, ‘We aren’t perfect. We’re just perfect for each other,’” Bill said.

A Cancer Diagnosis

In 2012, Bonnie scheduled an annual exam with her doctor. She had a history of thyroid issues but was an otherwise healthy 50-year-old woman, so she had no reason to be concerned. But what should have been a routine exam led to a diagnosis of stage II thyroid cancer when her doctor found a lump and recommended additional testing.  

The treatment was straightforward. Bonnie had a total thyroidectomy, which is a standard treatment for thyroid cancer, and was then given a radioactive iodine pill to eliminate any remaining cancer cells. Bill said the worst part of the treatment for Bonnie was being separated from her family. Because of the radioactivity, she had to avoid close contact with other people for a few weeks, so she moved into their basement after being discharged from the hospital. Follow-up scans showed no signs of cancer and life slowly returned to normal.  

Metastatic Cancer of Unknown Origin

In 2017, Bonnie developed pain in her hips and ribs. It was subtle at first, but she scheduled an appointment with her doctor just to be safe. Once again, Bonnie was diagnosed with cancer. This time it was stage IV metastatic cancer of unknown origin.

“I could see it on his face,” Bill said, recalling the moment they received the diagnosis. “I knew we were in trouble because one of the first things he said was, ‘It’s bad.’” The cancer was in her bones, liver, lungs, and other organs. The prognosis was grim — five years at best — but they met with an oncologist and Bonnie started chemotherapy.

By January 2020, the cancer still wasn’t under control. They talked about getting help at MD Anderson Cancer Center in Houston, Texas, but they lived in Georgia and Bonnie wasn’t well enough to travel. They later discovered that Piedmont Healthcare in Atlanta is a member of the MD Anderson Affiliate Network, so they made an appointment with a specialist at Piedmont in May 2020.

After reviewing Bonnie’s medical history and the results of a genetic test, the oncologist recommended pemigatinib (Pemazyre), a targeted therapy approved by the U.S. Food and Drug Administration (FDA) just weeks earlier. The potential side effects were concerning, as was the cost, but they were running out of options and decided to give it a try.  

Drug Costs and Cancer Treatment

The Pemazyre was $3,000 per pill, and Bonnie would need one pill per day for 14 days. Then she would get seven days off before repeating the cycle. At first, it looked like the out-of-pocket cost for Bonnie’s treatment would be $60,000 per month, or $720,000 per year. Bill submitted an application for financial aid and was denied, but he hadn’t given up.

After repeated calls to Medicare, which Bonnie switched to in April when her COBRA coverage ran out, Bill received good news.

“I found out after rounds of phone calls that Medicare has a tiered drug plan. Once we hit $6,800 out of pocket, the drug cost would be $150 per month. It came out to around $8,000 for the year.” Still a lot of money, but Bill was determined to figure out a way to pay for it.

Tragically, however, Bonnie’s health deteriorated quickly. As the cancer infiltrated her bones, she had repeated bone fractures and became bedridden. The novel drug was no longer an option.

“The Pemazyre was a last resort but it gave us at least a little bit of hope,” Bill said. “I would have liked to have known if this drug would have done anything to help or if it just would have caused side effects. Unfortunately, we never got a chance to find out.”

Bonnie passed away at home on August 1, 2020.

Advice for Care Partners

Reflecting on his journey and the lessons he learned, there are things Bill would have done differently. He hopes to help others by sharing his experience.

  1. Listen to your body. If you notice any unusual signs or symptoms, like a nagging cough or fatigue, talk to your doctor. A few months before her second diagnosis, Bonnie was slicing vegetables and cut her finger. “It would not stop bleeding,” Bill recalled.I’d never seen anything like it.” He said he didn’t think much of it at the time, but in hindsight her inability to clot was likely a symptom of the cancer that wouldn’t be found for months.
  2. Ask about genetic testing. While the genetic test that led to Pemazyre as an option for Bonnie came too late, Bill learned enough about genetic testing to recognize its value in relation to personalized cancer diagnoses and treatments. “Give your oncologist as much information as you can,” Bill said. “I spread the word to people that genetic testing is out there and available.”
  3. Don’t get complacent. If you’ve been diagnosed with cancer, consult an oncologist who specializes in the disease. And if, at any point, you feel like your doctor has run out of options, find a new one. “I would never stay with an oncologist as long as we stayed with the original one,” Bill said. “I think we got complacent at times and it cost us.”
  4. Talk to a financial navigator. Having someone to help navigate the financial burden of a cancer diagnosis can lower stress for patients and care partners. As Bill reflects on what he learned about insurance and drug costs, he still wonders if the Pemazyre could have helped. “I feel like Doc Graham in ‘Field of Dreams,’” Bill said. “It was like coming this close to your dreams and then watching them brush past you like strangers in a crowd.”
  5. Support the patient’s wishes. As a care partner, Bill knew his job was to make sure Bonnie felt heard, supported and loved no matter what decision she made. “I told her, ‘If you want to fight, I’ll fight. If you want to go on hospice, I’ll support you.’ She’s the one who had to do the physical suffering and deal with the side effects. I told her I’d support her no matter what.”

BonniekidsA Humble Angel

Before ending our video call, I told Bill I read an article from 2017 where he and Bonnie were being interviewed and she said, “My husband is an angel…a humble angel.”

Bill smiled sadly and looked away for a minute before responding.

“She wanted to live, and I was going to do everything in my power to try and get her as many days, months, and years as she could get,” he said. “It was the hardest time of my life, but I loved taking care of her.”

 

- Suzanne Mooney

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