Living With Blood Cancer: How Hope Has Kept Patient 007 Alive Through 30 Years With Multiple Myeloma
Key takeaways:
James Bond of Cleveland knows there are no guarantees in life.
For the last 30 years, he’s dealt with an incurable blood cancer called multiple myeloma and, for the last 10, treatment-induced leukemia.
He was patient 007 in a clinical trial that he credits with saving his life, and he wants to give hope to others.
When James “Jim” Bond joined a clinical trial to treat his multiple myeloma, he was the seventh patient in the trial: patient 007.
That was 2002. When Jim was diagnosed in 1992, he was in the last stage of multiple myeloma, a cancer of the bone marrow. He was suffering from damaged and broken bones and kidney impairment, and his oncologist gave him 3 years to live.
“I was really, really in trouble,” he says.
Rather than quitting his job and working on his bucket list, like his doctor told him to, he decided to ask questions and seek second opinions. That led to three stem cell (bone marrow) transplants at the University Hospitals Seidman Cancer Center, in Cleveland, which allowed him to survive for 10 years. But, in 2002, his doctor told him there were no more treatments. Jim asked his doctor what he would do. His doctor suggested hospice.
Instead, Jim joined a clinical trial, as patient 007, at the Dana-Farber Cancer Institute in Boston. He credits the trial for saving his life and for leading to the FDA’s approval of the drug Velcade.
In 2013, Jim developed treatment-related acute myeloid leukemia (AML). Since having a fourth transplant, he has been in remission from both leukemia and multiple myeloma.
Now, as a 73-year-old retiree in Cleveland, he says this is the key to survival: Be an active participant in your treatment and have hope.
Being partners with medical professionals
When his doctor suggested that he go to hospice, 20 years ago, Jim asked more questions. Then, he sought more opinions. He says those actions led to his survival.
He never tried to play doctor, he stresses, because that would be “foolish.”
The doctors know medicine far better than he ever will, he says; but he and his wife, Kathleen, know his case and life best. When they can all work together, “it makes a better team,” he says.
It was scary, at first, to advocate for himself. Once, he told a doctor he wanted to go an alternate route and the doctor said, “I’ll go along with you, but it’s not what I recommend.” When the alternate route worked, Jim worried the doctor would be mad. But, instead, the doctor told him, “Congratulations, that was a good call you made.” That helped Jim’s confidence.
And, Jim says, it doesn’t hurt that he’s a naturally stubborn person. He says being a certified public accountant for 39 years taught him to ask the tough questions.
“Don’t be afraid to speak up, because it’s your life,” Jim says.
Sharing hope
When Jim started the clinical trial in Boston, their children were away at college. At that time in their lives, he and his wife had the resources to travel for his treatment.
“I wondered about people who don’t have the resources,” he says. “What the heck do they do when they have to go out of town?”
That’s when his wife, a longtime American Cancer Society (ACS) volunteer, reminded him that the organization has more than 30 Hope Lodges across the country. At Hope Lodges, patients and caregivers can stay for free during treatment.
Kathleen came up with the idea of starting a charity bike ride to raise awareness and money for Hope Lodges — even though neither of them cycled or even owned bikes, Jim says. She teamed up with a cyclist and founded the Pan Ohio Hope Ride, a 4-day, 328-mile bike ride from Cleveland to Cincinnati. It has raised more than $13 million since it began in 2007.
That first year, Jim followed a training guide in the months leading up to the ride. Shortly before it took place, a local reporter asked one of Jim and Kathleen’s sons, Bob, if he thought his dad could complete the ride.
“I don’t know if my dad will make it or not,” Jim remembers Bob answering. “But I’ll say this about my dad: When dad says he’s going to do something, he’ll do it.”
And he did — that year and for the next 12, until he finally had to retire from the Pan Ohio Hope Ride, a few years ago.
Through the bike ride, speaking engagements, Jim’s book, “The Man in the Arena: Surviving Multiple Myeloma Since 1992,” the Bonds have made it a priority to share hope with others. The book’s profits go to charity.
‘Keep the game going’
It’s tricky, though, to have the right amount of hope. After 30 years of emotional moments related to diagnoses and results, Jim and Kathleen have learned to manage their reactions.
Whether it’s good or bad news, they take each result as just that: only one result. Good news is a relief, but, since Jim has a condition with no cure, they know that the next result might not be so good.
Bad news can be devastating, but “there’s no sense getting dismal about today’s prospect,” Jim says. “To me, there’s always a bright light.”
Jim and Kathleen stay optimistic by remembering that the next great treatment could come out tomorrow.
“If I can just keep the game going, just tie it up and keep going — or, in basketball, send the game into overtime. Just keep playing,” he says, referring to his journey with blood cancer. Since his diagnosis, 15 new treatments have been approved and released. The next one that helps Jim could come at any time.
Each additional day has brought gifts that Jim didn’t think he would get when he was first diagnosed: watching their two sons get married; welcoming three grandchildren; surprising Kathleen with a seventieth birthday party; and taking a golf trip to Scotland with his older son.
“Being more aware of my own mortality, it makes everything seem a little bit more special,” he says. “I certainly don’t take anything for granted.”
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