When Keith Guernsey, 69, of Gainesville, GA, first found out he had multiple myeloma, it came as a complete shock. He had just gotten through prostate cancer surgery and was looking forward to leaving cancer behind. He hadn’t noticed any signs of any other health problem. But blood tests, which his doctor had ordered in connection with the earlier cancer, led to the unthinkable: Guernsey was facing a new and this time treatable, but incurable cancer diagnosis.
“My wife became my only caregiver because the rest of my family is dispersed,” says Guernsey.
He used online support groups where he met people across the country with various stages of multiple myeloma. He found particular inspiration in a woman in California whose initial diagnosis was stage IV multiple myeloma.
“She was told to get her business in order – she had 6 months to live,” Guernsey said. “She has been in remission for 20 years. It gives me and others a lot of hope. It’s a very supportive group. “
Find resources
While multiple myeloma is a rare cancer, many resources are available to support people with this myeloma. A good place to start is having your own care team, says Dr. Jason Valent, myeloma specialist at the Cleveland Clinic. In addition to myeloma specialists, the care teams include palliative care specialists who help with pain, as well as psychologists and psychiatrists who help you deal with the diagnosis.
“This is a very important thing for patients to have access to,” says Valent. “The emotional pain is often just as bad or even more severe [than the physical pain]. ”
Michelle O’Hare, RN, an oncology nurse who cares for multiple myeloma patients at Memorial Sloan Kettering Cancer Center, says those in need of additional assistance can speak to a social worker who can connect them to transportation and other assistance. A case manager can be helpful if you need care at home. She also recommends support groups that can be in person or online.
“I always tell patients they can google multiple myeloma support groups and get a full list,” said O’Hare. “That’s the beauty of the internet.”
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Online organizations that provide help for people with myeloma include:
- Myeloma Crowd by Healthtree
- Multiple Myeloma Research Foundation
- International Myeloma Society
- Leukemia & Lymphoma Society (LLS)
“In addition to providing patient resources for support groups, LLS can provide financial support for copays,” says Valent.
In addition to support groups, some organizations may connect you with a personal mentor or coach. For example, the coaches at Myeloma Coach by Healthtree are myeloma patients or caregivers who will keep in touch with you, listen and provide guidance on financial aid, online resources and much more.
Find your own way
Urvi Shah, MD, a multiple myeloma specialist at Memorial Sloan Kettering Cancer Center, says you should be true to yourself as you choose one of your many support options.
“Patients should carefully choose what is right for them,” says Shah. “For some, self-help groups are helpful. They want to know what is ahead and it will reduce stress. For others, too much hearing worsens stress and anxiety. When you know what kind of personality you have, you can decide if and to whom to turn. “
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Amy Pappas of Cleveland, OH found that she had multiple myeloma at the age of 45 after sending her to a spinal specialist in severe back pain. It turned out that the cancer had cracked her spine. It was also in her ribs, pelvis, and skull. Instead of online groups, she relied on a close network of friends and family for support.
“Even though I felt really sick [at times during treatment]I just kept going, ”says Pappas. “This is my personality: I try to feel normal as I get better. The distractions for me were huge. I could say to my friends, “Hey, I feel like shit, but come over and distract me.”
She also took advantage of the yoga classes the Cleveland Clinic offers for people with all types of cancer once or twice a week. The classes were relaxed and small, and included people at all stages of their cancer journey.
“It felt good to be with these people,” she says. “It was a nice outlet and different from a normal yoga studio.”
The circle closes
Guernsey is now in its second year of remission. He says he feels as good as he has since he was 28 and still plays hockey. He still has regular Zoom calls with people he met through an online support group. He also serves as a myeloma trainer for others who are going through the same things he has.
“I’m not a doctor, so I don’t pretend to be,” says Guernsey. “But I share my experiences and try to let them know what worked for me. It can work for them too. “
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