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Myeloma Dispatches: Multiple Myeloma As A Triathlon Sport

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Published: Sep 28, 2015 5:44 pm

“Seventeen minutes slower ...” In August, 2010, I was 17 minutes slower in the Cherry Creek Sprint Triathlon – an 800-meter swim, 12-mile bike ride, and a 5k run – than the previous year. Seventeen minutes slower was a worrisome change for me.

Before you mistake me for a lean, mean, athletic machine, let me intro­duce myself. I am a 71-year old woman who is a little overweight, a strong swimmer, and a power walker. As an athlete, I am truly a turtle, but tri­ath­lons are perfect for athletes like me. The cross training of triathlons is gentle on the aging body, and I experience great satisfaction in complet­ing a multi-sport event. Plus, I was a coach for the Roaring Fork Tri­athlon team – a fun, supportive group of women.

Triathlons have been my summer project for the past 20 years.

In the summer of 2010, I was dismayed by my slower time, so I performed a self-assessment. I had been get­ting slower since early summer, and no matter how hard I trained, I tired sooner, even noticing shortness of breath. Another oddity I noticed was that food tasted different; I no longer liked familiar foods.

I decided that it was time for me to visit my long-time family physician. He listened carefully, performed a thorough exam, but found nothing notable. What he did not say was, "You are just getting older." Instead, he ordered a panel of blood tests and consulted a hematologist. More blood tests and urine tests followed. That summer, my family physician saved my life.

Undoubtedly, you remember when you were first diagnosed with multiple myeloma. For me, it was August 22, 2010. My husband and I sat in disbelief and ignorance in the oncologist’s office. I was slower in the triathlon because I was seriously anemic. My hemoglobin was so low that the doctor was surprised I was able to complete a sprint triathlon.

Even though I am a masters level nurse, I knew nothing about multiple myeloma. Nothing. Both my husband and I heard little of the doctor’s words after he mentioned the word “blood cancer.” We learned later that this was a natural response. On that day, we stepped through an unseen doorway into cancerland.

Two days later, I began a new school year in my job as a professor of nursing. On the same day, I started treatment. As a nurse I can compartmentalize well, so I continued to teach each day, swallowed the Revlimid (lenalidomide) and dexamethasone (Decadron) pills, and began the myeloma journey.

The side effects were troublesome to me. I experienced fatigue in the afternoon, along with bouts of dizziness and constipation. In the past, I had not paid much attention to my bowel habits. That all changed when I was admitted to the hospital overnight for a bowel obstruction after two weeks on these drugs. It was painful and scary. I learned that I had to pay attention to bowel patterns and manage changes. I also learned that constipation and diarrhea are often part of the myeloma treatment.

In September, after one month of treatment, I received more bad news. My form of myeloma was categorized as aggressive because I had the chromosomal abnormalities t(4; 14) and del(17p).

It was time to travel to the University of Colorado Hospital in Denver to meet with a myeloma specialist. Denver is a 3.5-hour drive, in good weather, over two mountain passes. We would view this mountain drive as another stage in the triathlon of cancer.

The day was filled with tests: a PET scan, a bone marrow biopsy, a bone scan, skeletal x-rays, and additional blood tests. After a thorough evaluation, the myeloma specialist recommended an autologous stem cell transplant, sooner rather than later, because my myeloma cells were aggressive and at risk for defeating simple chemotherapy. I was 66 years old at the time, hitting the upper age limit for this treatment regimen. However, the specialist believed that I nevertheless was a good candidate for an autologous stem cell transplant because I was healthy otherwise and in good physical shape.

The fall of 2010 remains a blur. I continued to teach, glad to focus on being someone else besides a cancer patient. Like a triathlete, I planned for each stage of the upcoming treatment plan as a different event: inpatient induction chemotherapy, stem cell harvest, and finally the transplant.

The gift of 20 years of tri-training is that I knew how to set goals and break them into manageable actions. My first goal was to remain healthy throughout the induction therapy. I walked regularly, ate healthy, and lived each day with positive intent.

Induction chemotherapy consisted of a potent combination of drugs called the VDT-PACE protocol. On days 1 through 4 of each treatment cycle, I would receive Velcade (bortezomib), doxorubicin (Adriamycin), etoposide, cyclophosphamide (Cytoxan), cisplatin, and dexamethasone, administered as infusions at the hospital, followed by three weeks of rest. At minimum, I would lose my hair, become immunocompromised, and feel weaker.

In November 2010, my adult sons and I entered the large University of Colorado Hospital for my first round of induction therapy. A surgeon implanted a dual-chamber port under my chest skin so that all the intravenous drugs could be administered more easily. That procedure was neither painful nor scary.

The first overnight hospital experience was a bigger personal challenge than any athletic event in my life. Once my sons left, I became afraid. I was in a strange hospital in a strange town. I was a patient and not a nurse.

To calm myself, I turned to a familiar strategy used in tri-training: visualization. I visualized my safe bedroom at home, focusing on slow breathing. Breathe in, breathe out, to the count of four. My fear diminished. This strategy proved to be a powerful tool for me to use over and over.

As I revisit the fall of 2010, the schedules, plans, and goals were my valiant attempt to control this disease and its attack on my body.

In December 2010, I was bald but hopeful. I had survived one round of the inpatient induction therapy with the help of my tri-sisters, friends, and family. They were a band of angels building a circle of love around me. They provided me with meals, cards, hat parties, and infusions of positive energy. I embraced my baldness with colorful scarves, walked daily, and continued to teach.

First event down in the triathlon of cancer, and I was still coping.

Around the same time, my long-time girlfriends and I signed up to participate in the 10k Winter Sun Race in Moab, Utah, for the fifth straight year. The second round of induction therapy was scheduled for the week after the race. I thought a weekend of laughter and good company was a perfect way to prepare for the second hospitalization.

I walked the course slowly and was the last person to cross the finish line. I was happy despite a nagging cough that bothered me the entire weekend.

By the time I arrived at the hospital for the second round of treatment, the cough had worsened and I had chest pain. After a chest x-ray and CT scan were completed, I received the awful news. “You have fungal pneumonia. Go home and get better.” My fantasy schedule dissolved with a cough and a fever.

Slowly, I did get better. My job was more understanding than I was. Substitute teachers were hired for a longer time. Painfully I learned that everyone is replaceable.

I had to apply another lesson from triathlons to my life with myeloma. When your original plan falls apart, you create Plan B. In triathlons, I have experienced flat tires or choppy waters that interfered with a successful race, but did not prevent me from finishing it.

Even though the next stage of treatment was delayed, I couldn’t give up; I had to adapt.

Plan B meant resting more and paying closer attention to my body. Like every one of us, I re-learned that I could plan and set goals, but not control the outcome.  So I focused on each day instead, celebrating small successes.

Maureen Nuckols is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. Her column will be published once a month.

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

Photo of Maureen Nuckols, monthly columnist at The Myeloma Beacon.
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13 Comments »

  • Deb Graff said:

    Excellent article. we are kindred souls except for the running! I was diagnosed in Nov. Of "09" ,17p deletion,RVD,SCT, RV, RVD,PVD trial ,radiation for extramedulary tumors, and now on Dara trial. feeling great. every person with 17p is not the same so I wish you luck on your present treatment and know that your positive attitude and approach to goals will serve you well!

  • Nancy Shamanna said:

    Welcome to the Beacon, Maureen! I found your story to be very interesting! As a nurse, and an athlete, you seem well prepared to take on the challenges of being a myeloma patient. I look forward to reading your next column too!

  • masha rozman said:

    Maureen, Thanks so much for writing this! Sounds so, so familiar. I look forward to reading more of your contributions. I wish you well. masha

  • Craig said:

    Maureen
    Welcome. Great article although I have to admit it was sad to learn about "another one of us".
    Best wishes

  • Ron Harvot said:

    Great article Maureen. I am an avid cyclist and my story is somewhat similar. I too noticed getting tired more easily when cycling on consecutive days. My family physician noticed an increase in protein in a 24 hour urine test that ultimately led to my diagnosis. I have been able to return to cycling and this past year have had my best results since before being diagnosed in 2009.

    The article talks about your initial diagnosis. I assume that since that was 5 years ago that you have gone back to doing Tri's. Hopefully your experience has been similiar to mine.

    Ron

  • KimT said:

    Welcome! I look forward to reading your columns!
    Kim
    (a dabbler in triathlon)

  • frank said:

    Maureen, You have a nice writing style and a knack for story telling. All the flash points that I experienced since a 2003 diagnosis are in your story.

    I look forward to following you here in the Beacon.

    Frank

  • Maureen Nuckols (author) said:

    Thank you to everyone who left a comment, I realize that our special club includes many wonderful and unique members. We are definitely more than our disease. A couple of questions that I can answer is that 5 years later I am still doing triathlons, although a lot slower. I don't run, just walk and sometimes I am the last person to cross the finish line. Yet it still gives me a vacation from being a cancer patient.

    Thank you for welcoming me. Maureen

  • Nancy said:

    Hey Maureen, I love your story and am thankful that you did not disclose that I had suggested perhaps you were running slower because your playlist sounded like a dirge march. I was so wrong. So glad you have proved that you can still perservere as a athlete as well as a cancer fighter. Carry on! Looking forward to the next dispatch.

  • keith taylor said:

    I had completed 11 marathons and 4 tri's. I was on a long run when I felt a crippling pain in my back (T5). With wonderful support of my GP, who trusted my sense of my own body and my belief that this was more than "just a muscle problem", within 2 weeks I was diagnosed with multiple myeloma. Having now completed the 'full-treatment' of stem cell and chemo, I am back to short-course tri's. Being of a similar age as you, I am not fast however, with a great sense of personal satisfaction, I now beat (some) younger athletes.

    Maureen, maintain a determined training program, keep positive and focus on the finish! I still tear on the completion of each event as I have the knowledge that I did it!!

  • Maureen Nuckols (author) said:

    Keith, thanks for your encouragement and advice. This is why I wanted to write a column. Next month I will tell the rest of the story. So glad that your stem cell transplant and treatment worked. One key detail was that, before the multiple myeloma, I was already slow. Not a bad swimmer or biker, just the run is where everyone beats me. So good for you beating some younger athletes. I love hearing this. Maureen

  • Judy said:

    Marueen, thank you for sharing your story, I felt you were talking about myself.

    We are so lucky to have a second chance at life. I am thankful everyday.

    You are an excellent writer and I enjoyed hearing about your journey.

  • Maureen Nuckols (author) said:

    Judy, thanks for the kind words, since I am back in treatment again, the timing was excellent. I forget somedays how lucky we are.
    Maureen