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Myeloma, Party of Two: On Myeloma’s Ice

By: Tabitha Tow Burns; Published: November 3, 2017 @ 4:09 pm | Comments Disabled

I’ve been a fan of figure skating since I was a child. I watched every Winter Olympics to see the skaters compete. I still like to go to the ice rink and watch skaters. When I’m there, I’ll close my eyes and listen, waiting for the "swoosh ... swoosh" as the skaters pass by with their colorful, spandexed gusts.

Recently, I took a rest from my errands in the mall and went to my favorite perch by the ice rink. This day there weren’t any figure skaters on the ice. What I saw was a little girl who couldn’t have been more than five years old taking her first private lesson. She had tiny white mittens, white skates, and pink pom-poms. As the smiling coach and the wobbly-legged girl took to the ice, I watched to see what the girl would learn, but what I took away was a deeper understanding of myself as a caregiver.

This young skater was green. She didn’t even know how to glide on the ice. With each step, she made short, jerky movements, see-sawing one foot in front of the other until she nearly fell. This coach really had her work cut out for her, I thought! This child has so much to learn. The gap from where she was to where she needed to be was huge. How would she learn all that she needed to know to be able to even skate, much less be artistic?

As the lesson went on, I watched as the coach drew two serpentine lines stretching down the center of the ice, and she placed each of the little girl’s skates on each line. I could tell that the coach was trying to teach her how to use her feet to make turns and twists – one of the foundations of figure skating moves. In her first attempt, the skater made it a little way down the line, but soon stopped. Her knees were too stiff, so she didn’t have enough momentum to complete the whole path. Next, her coach showed her how to bend to create more momentum and use the toe pick to push off and complete the line. She fell once or twice, but the little skater was learning. The coach had her repeat the skill over and over again, and the child’s skating improved. By the end of the lesson, the child could skate the serpentine lines by herself.

As I watched this play out, it occurred to me how much like this skater I was. From small, uncertain steps, I learned how to be a caregiver. In the beginning, I was awkward and afraid. Five years on, I am still trepidatious, but I feel more comfortable in my own skin, and I’m learning how to incorporate multiple myeloma into our lives.

At first, I felt like a new skater, with my legs and arms all akimbo, not sure what I could do to help my husband, “the patient.” This was a new role for the man I’d married; a man who hated going to the doctor and stood up to sickness with a swagger that would impress John Wayne. I had a tall order: to convince my “just walk it off” husband to get the specialized help he needed and manage all those details that I knew nothing about, while keeping myself from giving into the emotions that might add to his stress and worry. Like many Beacon readers, I remember Googling everything I could about myeloma and being horrified at what I read. Five years on, I now research information strategically with a few doctor-approved sites, like the Myeloma Beacon.

Eventually, we sold our house and found good jobs in a city with a major myeloma research hospital. We started seeing his myeloma specialist regularly, and fell into a rhythm. Sure, in the beginning it was tough, but we adapted and learned. It’s not that we don’t have stress in our lives, but now most of our steps are no longer so uncertain or unfamiliar to us.

Like the skater taking her first steps, I don’t know what the future holds for my husband and me. What I do know is that from initial diagnosis and uncertainty, we have learned to step, and then glide, on the ice. I’m still learning my patient’s needs, and what he needs changes, because Daniel’s needs change as his myeloma changes. But I’ve learned a lot already. I’ve learned his nervous rituals before every appoint­ment, and I know that he won’t sit on the examining table until the doctor comes in. I know when he needs me to be quiet and when he needs me to ask questions of the specialist. I’ve learned that he needs to research news and advancements in myeloma daily, whereas I’d prefer to not think about it until we have to. I’ve also learned that he tries to keep his feelings out of it, and that isn’t so easy for me.

Like the skater, I’ve also learned the importance of momentum. We must move forward. It’s about persevering: falling down and getting back up again. It’s about not being too hard on yourself when your best isn’t enough, learning how to cope better, and trusting the hand of your specialists, caregivers, and support staff.

We’ve faced a few challenges and we know that tougher challenges await us, but we’re learning how to accept, adapt, and do the best we can with what we have today. Thankfully, the momentum we’ve found has become a familiar “swoosh” of coping with the ever-present myeloma in our lives. And like the skater with her coach, we are ever stronger together as we go round and round this thin myeloma ice.

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 [1].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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