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Myeloma Dispatches: Caregiving As An Art

By: Maureen Nuckols; Published: February 2, 2017 @ 3:14 pm | Comments Disabled

In our family, my husband Mark is the caregiver for me. It wasn’t always that way.

For the first 25 years, we were equal partners. We raised two sons, bal­anc­ing demands of careers and the challenges of parenting. Our lives were not easy, but wonderful and rich. Our children grew up, and we found more time for our personal passions; athletics for me and rock hunting for him.

Six and half years ago, I was diagnosed with multiple myeloma. In the first few months after my diagnosis, our relationship experienced a tectonic shift, like a personal earthquake. Mark became a caregiver, and I became a patient. Multiple myeloma became a member of our family.

One definition of a “caregiver” is a person who provides assistance to a person who is chronically ill. I have been chronically ill with multiple myeloma for six years. When we met and married, I was independent, accomplished, and a caregiver for others. I was a nurse and a teacher of nursing. Twenty five years later, my life changed. This shift to being ill was difficult for both of us.

However, my husband grew into his new role with his natural traits of humor, patience, and empathy. He is a steady guy, even tempered, and often quiet. I especially needed his steadiness with my mood swings that arrived with many of the treatment drugs. With a sharp learning curve, he learned what was comforting and what was not. One of his favorite lines is “Remember that everything feels worse when it’s dark outside. When the sun comes up again, and it’s light outside, you will feel better.” Fortunately, he is usually an optimist, and does not worry as much as I do.

I also count on his even temperament. As I climb the mountains and valleys of mood swings, he remains calm. He has joked about building a shelter in the back yard for my steroid times. Recently I was taking 40 mg of dexamethasone twice a week. I admit I became a really difficult person. So Mark and I consulted with my oncologist. He listened, then reduced the dex dose dramatically. Immediately I became less irritable, less moody, and a much easier companion.

During my last relapse, Mark took over all the practical chores of our household. He cooked all the meals, grocery shopped, paid the bills, and drove me for treatment.  During all of that, he worked full time. The cost to him was exhaustion. In October, he asked for a family medical leave from his job as a policeman. The chief of police took one look at Mark’s face, and granted the leave that same day. Mark’s life improved that day; I felt a huge relief.

Mark is creative in his job as caregiver. This fall, he announced he had a surprise for me. On a glorious autumn day, he drove me into the Colorado backcountry. He parked the car, and we walked up a short, steep trail to the top of the ridge. Even though I was weak at this time, I was able to complete the 10-minute walk. At the top of the ridge, we walked on a flat trail between scarlet scrub oak, dark green juniper, and pinyon pine. Soon, I could see two heavy, green, plastic chairs parked at the end of the ridge. Mark had discovered the trail and the chairs on one of his walks with our dog. The view was a crazy quilt of orange, red, gold, green, and brown vegetation covering the near hillside. Our local mountain, Mt. Sopris, stood in majesty to the east. Immersed in the senses of a glorious fall day, I experienced a bubble of joy. He had found a way for both of us to experience happiness. He walked with our dog; I sat and wrote a poem.

How does my caregiver take care of himself? Mark has a passion, and that is rocks. He spends as much time as he can in the outdoors, searching for agate, jasper, quartz, geodes, and all kinds of rocks. This passion takes him to desolate and remote places, usually in the southwest. When we are not traveling, he cuts rocks into thin slabs, slices, and polishes them into beautiful pieces. Recently, he has taught himself to make rings and bracelets. He can see the beauty hidden in the rock, than creates works of art.

His newest adventure is retirement. After 29 years as a policeman in our small town, he retired in January. The town and I gave him a party, and over 200 people came to thank him for his service. I am not the only one who appreciates him.

His decision to retire did not come easily. However, my last relapse was serious and scary for both of us. The new drug of Darzalex (daratumumab) gave me new life, new energy, and new hope. He decided to free his life so we can travel now.

I am still in treatment, yet I am enjoying a two-week respite from all drugs. As I write this column, we are in the Organ Pipe Cactus National Monument, surrounded by the diverse cacti of the Sonoran Desert. This park is magical, alien, and wildly beautiful.

As we hiked, I felt a familiar bubble of joy. I am blessed to be married to my caregiver. He is my best friend, an awesome father, and the love of my life.

Maureen Nuckols is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [1].

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