5 Ways to Care for a Loved One With Multiple Myeloma
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When Pat Hairston accompanied her husband, Bob, to a doctor’s appointment in November 2018, she wasn’t initially concerned. It was the latest in a series of appointments she had attended with Bob in an effort to find answers to symptoms he was experiencing. “After all the referrals, I thought, ‘We’re just going in for this review with the oncologist,” Pat says.
That day, Bob was diagnosed with multiple myeloma, a rare blood cancer the couple had never heard of. Bob describes the moment of diagnosis “hitting him like a sledgehammer,” and while Pat had a similar reaction, the diagnosis evoked something else in her: the need to learn everything she could about this disease so she could help her husband advocate for the best care.
Once the initial shock of the cancer diagnosis wore off, Pat and Bob went into education mode so they could tackle the challenge of navigating the treatment decisions ahead. They learned multiple myeloma is a type of cancer that forms in plasma cells, which are a type of white blood cell. It starts and remains in your bone marrow, unlike blood cancers such as leukemia, which circulate in the bloodstream. Healthy plasma cells make antibodies that kill infections in your system. But when you have multiple myeloma, one cancerous plasma cell forms in your bone marrow and then multiplies, building up abnormal antibodies that can damage your bones and kidneys. Bob’s doctor explain that, while the disease is still considered incurable, it’s treatable—and today, many treatment options are available.
For most multiple myeloma patients, early diagnosis and first-line treatment decisions are critical to prognosis because the length of remission decreases with each new relapse and duration of responses in the first lines of therapy. So those first decisions have added weight during a time that can often feel scary and confusing.
Bob had Pat as an effective care partner available to provide support through appointments and treatments during these early days of diagnosis and beyond. Her intelligent and organized approach to the situation helped the couple make decisions about treatment and kept their life largely unchanged despite Bob’s illness. “I could not have done this without Pat—she’s my rock,” Bob stresses. He started treatment in 2020; today, he is in remission.
When Pat looks back on the experience of learning about and then navigating her husband’s multiple myeloma diagnosis, there are a few key steps she now recognizes aided her in the new role as a care partner.
5 ways to be a care partner
If you have a loved one living with multiple myeloma, here are five ways to offer your support and care, according to Pat.
1. Educate yourself
Pat believes both knowledge and support are key to a good outcome. “It’s important to learn as much as you can and to surround yourself with people who can help you through the process,” she says.
Upon Bob’s diagnosis, Pat looked for resources to help start her on her journey to learn everything she could about multiple myeloma. “I was digging for information, and I became analytical,” she recalls. “I started making charts [to keep track of treatment]. I started writing a journal for him, too, [to take notes and track symptoms and side effects], sharing every bit of information I came across.”
Bob found this assistance invaluable, especially when it came to keeping up with emerging medical research. “We learned that there were some very positive things that have been happening with cancer treatment, and for multiple myeloma specifically. Our insurance provider also offered a lot of education.”
Bob and Pat also strongly believe in patient advocacy. “I always say, ‘It’s better to ask a dumb question than make a dumb mistake—ask the question,’” Pat says.
2. Get organized
Pat set a strategy in motion to manage every aspect of Bob’s health. “I had to be organized in order for us to get through this,” recalls Pat. “I became very involved in Bob’s care, making lists of things that I had to do and a calendar and took care of his medicine.”
She used spreadsheets, and continued adding information to her journal. “Everything I was told by the doctors, I could refer back to,” she explains. “Document everything about your loved one’s care, and you’ll find it’s much easier to keep up with adjustments as treatment moves forward.”
3. Seek support
“Having people that you can rely on, or friends that you can call in the middle of the night when you’re at your wit’s end, is necessary,” Pat says; for instance, one person she called on is a close friend. “That was just absolutely awesome, and she always gave me good advice,” she adds.
Pat recommends joining a support group; they found one group particularly helpful. “People in the group have gone through what new patients are going through,” she explains. “Also, get to know your doctors really well. Developing a relationship with them helped us through the process.” When you relate to your healthcare team as people, you not only get the physical care you need but can develop a great emotional connection as well.
4. Give back
Throughout his fight with multiple myeloma, the lack of public awareness surrounding this cancer stood out to Bob. This was a main reason behind his decision to become a mentor to other patients. “I put myself in someone else’s place,” he explains. “You’re not playing a doctor. You’re not playing a nurse. You’re being an information conduit. There are a lot of questions that newly diagnosed patients have, a lot of fears. If you have someone who can take you through things in an orderly fashion, it makes all the difference in the world.”
When you reach the point in your journey where you feel you want to share what you’ve learned, you can find opportunities to share your knowledge online or through your local hospital. “It’s rewarding to know that you pointed someone in the right direction,” Bob says.
Your story matters. Share it. Visit The SHARE Network, sponsored by Janssen to help create a future where disease is a thing of the past.
5. Take care of yourself, too
“Pat was right there with me when I was going through pain and insecurity, or just having a generally bad time,” Bob says. While a care partner provides this kind of support to a loved one, they need support in return. Care partners should make sure that they are taking care of themselves—if they don’t, it becomes difficult to take care of others.
Pat learned this firsthand. “I was so busy that I didn’t do things for myself,” she remembers. “I should’ve at some point gone to counseling to help me through the process. I would encourage current caregivers to do that.” Learn about care respite options, so you can take time for yourself to do things you enjoy—read a good book, see a movie, have lunch with a friend.
Stay healthy with regular exercise and nutritious food and reduce stress through mindfulness practices like meditation or yoga. Above all, give yourself credit: You are an amazing person, doing an amazing and selfless thing for your loved one!
***This article is sponsored by Janssen Oncology and was written in collaboration with Bob Hairston, a multiple myeloma patient, and Pat Hairston, his wife and care partner.
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