For a long time I was the "myeloma patient". For several months during tandem transplants I had a 24x7 caregiver (a good friend). When I returned to my family, they helped as my caregivers. My husband picked up my medications, brought me electrolyte replacement water during foot cramps, held my hand during biopsies, carried my purse when it got too heavy, put up with my complete lack of humor on dex and generally helped me navigate the road to recovery. It took a couple of years before I was really back to normal. This week I was on the caregiving end to my husband who had a partial knee replacement surgery. As you can imagine, he's been in a lot of pain. Some of the meds have made him loopy, others have made him impatient, given him anxiety, or made him downright cranky. Sound familiar? Although it's just a glimmer of the service that was provided to me, it was a great reminder that caregivers need care too. What I did last week is just a fraction of what myeloma caregivers do, but it was a flashback to my early mom days, where I was on call every hour of every day. I had a deep sense of purpose and satisfaction, but it didn't take away the fact that it was work. It required its own mental groove where I became accustomed to putting my needs aside some days because a baby needed extra care, the laundry was stacked a mile high and preschool was at our house that day. I've been taught that service brings joy, but some days I remember thinking, "I'm serving people 24x7, why I am so frustrated doing it?" Much of it was a head game, carving out the core things that would were absolute personal essentials that could renew me and then being mentally ok with the fact that the rest of my day was dedicated to the amazing little people around me. The pain that comes with myeloma brings both demands and opportunities. Whether we are on the caregiving side or the patient side, there's no question that it will be hard. But perhaps that's exactly the point of life's ups and downs. They may just be proving points - tests of how we handle both the good and the bad. I've heard it said that "No misfortune is so bad that whining about it won't make it worse" and believe it to be true for every adversity, including myeloma. The recent death of ESPN's Scott Stuart to cancer was tragic, but his attitude about the struggle was completely inspiring. At an awards dinner this summer, he said, “When you die, it does not mean that you lose to cancer,” Scott told the audience. “You beat cancer by how you live, why you live, and in the manner in which you live.” So give your caregiver a hug today. They are doing double duty to help support the fight and you might just make their day with words of appreciation and a smile.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.