Myeloma Dispatches: Caregiving As An Art
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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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I hope to be the type of hero that Mark is to you as I care for my husband. Caregiving is hard work. My husband catches every illness, and with this last one, I caught it from him--not fun to be sick and have so much to do. I am glad you are getting to travel. Thanks for the inspiration.
Dear Maureen, Your husband Mark sounds like a wonderful person, but I am sure you are a good patient too. Good to know you got the really strong dose of dex reduced! A long time ago, when I taught school in central Alberta, I took a lapidary course. I was working in an area where many people were rockhounds. There were even ammonite fossils there, although one cannot collect fossils. I remember making a 'cabochon' of a piece of agate that had a picture of a skier in it! We had a rock tumbler at home when I was growing up, and we enjoyed seeing the polished rocks! Thanks so much for your column!
Maureen, your husband sounds like such a wonderful caregiver! I imagine that both of you feel so grateful to have one another! Wishing you a wonderful respite from treatment and lots of good health!
I feel the same about my husband caregiver! We patients are so very thankful for you awesome people. Hosanna, I'm sure your husband feels the same about you.
I'm so, so glad to hear you are doing so much better, and that the Darzalex is working for you! When one of us is suffering, we all feel it. And congratulations to you for having such a caring and helpful husband. I do too. We are blessed.
Maureen, may God continue to bless you and your loving husband, Mark.
I have been the caregiver to my loving husband, Mark, since September 21, 2012.
It is extremely difficult to watch the love of your life battle each day with multiple myeloma.
Your husband sounds like a wonderful man. As a caregiver, there's nothing you wouldn't do to help your loved one feel better. This journey is truly an emotional roller coaster. However, I am reminded of the vow that my "Mark" and I took on October 21, 1989 before God "for better and for worse, in sickness and in health" etc. that will never change.❤ (I'm sure your husband feels the same)
I enjoyed your article, Maureen. My husband has been my rock, also through the past tumultuous five years. I reflect back to our wedding vows forty-three years ago - " in sickness and in health." As a young, healthy twenty-two year old I never gave those words any thought. This is true love when someone loves us unconditionally with this disease. I have a Father in heaven who will never disappoint me and a wonderful husband here on earth. Blessed.
Dear Hosanna, Thank you for your kind words. I bet you are a grand caregiver and you can appreciate how hard the job is sometime. Mark is not a saint either and sometimes he stumbles, but he is my rock.
Dear Nancy, I wait each month for your comments and always appreciate both your column and your comments. I hope you are doing well. I'm glad you know what a cabochon is, not many do.
Dear Tabitha, we are having a wonderful time. Right now we are staying at a historic hotel in Winslow, Arizona. We haven't stayed in a hotel for over a week, so it is a nice treat.
Dear Susan and Julie Munson, Sounds like we are both fortunate, blessed to have wonderful husbands. I really wrote this to give him the tribute he deserves. And yes, I am grateful that the Darzalex is working for me.
Dear Pamela, It was good to hear from the caregiver's perspective, and to recognize the emotional journey for both of you. I hope you are taking care of yourself also. We will be married March 23 for 32 years so I appreciate the longevity of your commitment.
Dear Susan, 5 years of illness balanced by a 43 year marriage. I acknowledge both of you for your promises to each other. We are both blessed.
What a wonderful column and wonderful person your husband is as a friend and caregiver. He has remarkable sensitivity and patience. Those are virtues I aspire to but fall short on at times.
Once again, my friend, you have touched my spirit and moved me through your writing. You and Mark are both very blessed in your lives to have found one another. I know you have been a good teacher for him and I know he listens and respects what you tell him when you tell him what you can about what you need. I'm especially glad that for you two, it didn't take a disease for you to recognize the gift you are to one another. For so many people it takes being diagnosed, and I love that for you and Mark it has been there all along. Enjoy your life together for every minute you have.
Wonderful column, Maureen. Yours is a beautiful story of love, determination, and perseverance. I am so happy for you that your husband has accepted the role of caregiver with such enthusiasm, devotion, and compassion. As always, we wish you continued good response to your treatments and keep on traveling.
Maureen,
As a caregiver to my husband, who was diagnosed last May and is currently undergoing an autologous stem cell transplant as an outpatient, I really appreciate your perspective. I only hope that I'm doing half as good a job as your husband, Mark. As I am the detailed one in the family, I've been the advocate and been learning all I can. My husband prefers not to know too many details, especially with the current stem cell process.
Sometimes the hardest thing as a caregiver is know what to say – showing empathy and concern, but keeping up my cheerleader role.
As a fellow Coloradoan, you've given me hope that my hubby and I can still go "hiking" and enjoy our beautiful state as well as travel. Thanks for sharing and enjoy your travels!
Hello Ron – Remember, Mark is not a saint, and his imperfections make him more lovable. Remember, if you fall short, you are continuing to climb.
Dear Sean – You are so important to me in my life. So glad that you know us both. I believe you are also blessed in your relationship.
Dear Patty – Remember that Mark does not always "accept his role with enthusiasm." I try very hard to observe those times, so I can nurture him. And traveling really helps.
Dear SwimMom,
I was a swimmom for years with my oldest child. You are in the tough time now, as he gains his strength, both of you will be able to enjoy more activities. Sometimes saying nothing is the right thing to say.
Mark as my caregiver became very stressed during the stem cell transplant. So please take a break when you can and use your own cheerleader friends.
This time will pass.
I read your column this morning on suggestion from my daughter, who has been an emotional strength as I bounce from thinking my myeloma is in remission to a relapse. She is also a incredible researcher which has given us all information and connection to love, hope, and sameness.
Maureen, I took hope, fun and inspiration from this column. Wishing you a wonderful day.
Nemaste
Helen
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