Myeloma, Party Of Two: The Caregiver’s Club

Recently, some close family friends received some bad news. Our good friend – I’ll call her Betty – has been on the novel drug Imbruvica (ibrutinib) for her aggressive lymphoma. Betty was on the drug for 21 months, and we were all hopeful that it would continue to keep her lymphoma at bay for many years to come. Unfortunately, she was just told that her lymphoma has returned, as evidenced by numerous tumors in her abdomen and back.
The plan was for her to go into a clinical trial if she could do without being on lymphoma drugs for 28 days while she was being approved for the trial. Unfortunately, her lymphoma had other plans, and it has become aggressive enough that her specialists are putting her on Revlimid (lenalidomide) until they can get the disease under control.
Betty’s daughter and caretaker – I’ll call her Suzie – is one of my closest friends. I’ve watched firsthand as she has cared for Betty over the last two years as they’ve fought her mom’s lymphoma. In fact, we were often at the cancer center at the same time, while I was there with my husband Daniel and she was there with Betty. Both Betty and Daniel were in clinical trials around the same time, their clinics were on the same floor, and they were on a similar appointment schedule for a while too.
Being a caretaker is a weird thing to have in common with someone, but it was a comfort to know that someone my age – someone who I’ve known for years – was going through something so similar with her loved one. We would talk about the drugs we heard were being studied in clinical trials, the side effects that Betty and Daniel had with their respective treatments, and how they coped with the strain.
When Betty was first treated, she wasn’t responding to any of the traditional treatments she received. Her tumors continued to grow, and things were looking pretty grim. But then they were able to put her on Imbruvica, and it was like a miracle. Before we knew it, Betty’s resistant tumors began shrinking, and she began to get stronger and stronger until she felt like her pre-lymphoma self. We all hoped that she could just stay on it for many years to come.
Once Betty was out of danger, it was like Suzie was given a new lease on life as well. I could see the strain and fear melt away from her, leaving behind much thankfulness and joy in its place.
It was a challenging time for Suzie, caring for her mom while also balancing a job, husband, and two young children. She was an excellent caregiver, and she never seemed to run out of the gas that she needed to care for all her responsibilities.
Now it is time for Plan B, and both Suzie and Betty are being called into action. When Suzie had told me all the news about her mother’s returning lymphoma, she finally said, “I just feel so tired”, and I understood all too well what she meant. She knows what lies ahead. She’s been here before, and she knows what is required – whether she is ready for it again or not.
It’s strange how everything can change so quickly when you least expect it. A few months ago Betty was feeling great. All of her scans were clean and she was feeling good. And then all of a sudden she felt sick again, and Suzie and Betty found themselves back on the lymphoma road.
Given all that we’ve shared over the last couple of years, I had hoped that I could give Suzie some sage advice or comfort. Unfortunately, I didn’t have the words yet. Suzie’s voice was faint with the kick in the gut that she and Betty were experiencing. And after four years of visits with multiple myeloma specialists, tests, and clinical trials, I felt as muted in the face of Suzie’s disappointment as if the news were about Daniel.
I was talking with Betty recently about what I could do to help, and she gave me the advice I needed. She said, “Just be here for Suzie and help us laugh where we can.” It was a simple, but important, assignment, and perhaps the best way that I can lift them up during this difficult time.
I thought about the visits we had at the cancer center, and they almost always involved laughter. We’d laugh about the time when the wheelchair got away from them and they bumped into the wall like drunken hoot-owls, or how as a redhead, Betty’s job was to keep the doctors on their toes. We always found humor where we could, and it brought a welcome respite from the pokes and prods of treatment.
Similarly, caregivers need levity too. I remember how relieved Suzie looked whenever we visited them in the hospital. It was nice for her to see a familiar face, and before long we’d find some funny story to share. Sometimes we didn’t talk at all, and that was good too – because sometimes it’s just enough to be near, like when we sat in the waiting room awaiting the completion of some lengthy procedure or test.
I know firsthand that caregivers need to care for each other. It helps to know that you aren’t alone as you encounter the unplanned detours of life. Few people can know what this is like, and so I will focus my energies on being there for Suzie – caregiver to caregiver.
While no one would ever intentionally seek membership to the Caregivers Club, I am thankful that we have one another during these difficult times. A spa pedicure or a nice chat over some ice cream can go a long way to helping maintain one’s sanity, so I plan to be here ... listening, laughing, and supporting my friend and fellow caregiver. I know that she’d do the same for me.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
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Tabitha, thanks for the lovely column. I am sorry that your friend's mother is struggling so much with lymphoma. I am sure that the hands of friendship that you and your spouse offer to her and her family really help them a lot.
Thank you, Nancy. We are the blessed ones to have such good friends in our lives - believe me! Hope that you are doing well. Wishing you the best!
When my husband was hospitalized early in his chemo stage, we hung a sign on the door "Do not enter without a joke!". Made everyone happier, even the grumpy doctor.
Love it, Bonnie! I think I know what gifts I'll bringing soon!
Dear Tabitha,
I enjoyed reading your article and your other columns. I am the one with myeloma in our 'Party of Two', and I often feel that I am the one who gets the support in abundance while my hubby just keeps on trucking along doing his best. Your columns help to bring another viewpoint to the fore and I find this very helpful. Thank you.
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