Remembering My Father’s Journey with Multiple Myeloma

By Elise Renner

There’s a 1-in-12 chance that this is the month yours or your loved one’s cancer is recognized—odds better than the survival rates for some of these diseases. Some months, like October, boast big names like breast cancer. Others, like September, are crowded with lesser-known branches of the disease. “Cancer apparel,” including ribbons and jewelry, is marketed with pretty colors, one for each type of cancer, and sold to raise money as well as awareness. For my dad, I would wear maroon. Multiple myeloma, maroon, March – whoever decided this must’ve been keen on alliteration. This month I am hyper-aware of the disease that took my dad’s life last year, but it isn’t because of a ribbon or cancer calendar.

Elise and her dad, Steven
Elise and her dad, Steven

As the first anniversary of his passing approaches, I find myself in constant reflection. The three-year battle we fought against this disease certainly felt like war for me, my mom, and especially my dad, who stood alone on the front lines. This month marks the day he found peace, but I, and the countless others who have enlisted against cancer, are forever dedicated to the fight. This is why awareness months exist; as trivial as it may seem to assign a color or a catchphrase to cancer, it’s another war tactic. The International Myeloma Foundation has implemented its “Tell One Person” campaign to increase awareness of this lesser-known disease, and hopefully by sharing my story I can arm you with one of the most powerful weapons we have: information.

The beginning

We had just recently moved from Virginia Beach, where we spent our days catching waves and riding bikes along the pier, to the colder climes of upstate New York. Even during the bitter winters, my dad still found ways to be active. He always made time for his favorite exercises during the week, and kept his weekends just as lively, planning fun outings with me and my mom to different museums, amusement parks, and restaurants.

In 2011, the three of us took a trip to Europe. My dad had to go for work-related reasons, but in his mind, the business of family fun came first. He was a rare “type A” personality who also knew how to have fun; he mapped our trip down to the double-decker bus routes, while allotting time for spontaneous exploring off the beaten path.

The day we were scheduled to leave, my parents received a call from my dad’s doctor, whom he had recently seen after noticing unusual, fleeting pulses of pain in his bones. Just hours before embarking on our journey, my dad found out there was an unknown infiltration in every single bone shown in his scan. I think he somehow knew this would be the last chance we would get to make this trip. Staying true to his logical, adventurous spirit, he confirmed with the doctor that nothing could be done right away, and wore a smile on his face as we left for the airport. If he was hurting then, emotionally or physically, he didn’t show it.

A young Elise and her dad, Steven
A young Elise and her dad, Steven

My mom, dad, and I were ambitious explorers, and we were excited to make new memories in Europe. But just three days after unpacking our bags, instead of exploring old world treasures, we were repacking and heading home. Struck by shooting pain that coursed the length of his back and neck, my dad had been unable to leave his hotel bed. Forced to face the grim news, we braced ourselves for the impending diagnosis: My dad had aggressive multiple myeloma.

The middle

It was a constant cycle of progression and regression as my dad found his “new normal.” He traded bike rides for back braces, Pilates classes for platelet packs, and mountainous hikes for monotonous trips to the hospital. He underwent two unsuccessful stem cell transplants, one autologous and one allogeneic, countless blood transfusions, chemotherapy, and radiation. The harsh drugs may have thinned his bones and hair, but he kept his mind sharp by making Excel spread sheets of his tumor markers, called Kappa Free Light chains. We watched the number oscillate as his disease progressed. Essentially, it indicated the amount of tumor in his bones – the lower the number, the fewer cancer cells. Sometimes it would be explosive in the high hundreds and sometimes it would waver in the single-digits, but we always held out hope for a lower number.

Elise's dad, Steven
Elise’s dad, Steven

Inside the stark white hospital halls, my parents would find ways to laugh and enjoy their time together.  They played card games, watched old movies, and reminisced. In preparation for his long hours in the MRI suite, my dad would study maps of Disney World and spend his time mentally touring the amusement park as the machine beeped around him. My mom kept meticulous track of the medicines he took, mastering the art of pinpointing which drugs caused the nastiest side effects, which kept him awake, and which courses of treatment would require a full-time caregiver. My mom was always this caregiver, and she devoted so much of herself to his fight, providing necessary comfort and care in a way no one else could. She was my dad’s advocate, his companion on long days in the hospital, and a super-woman for being there for him and still finding time for me.

Even though my dad is no longer with us, this story doesn’t have an end. Sometimes the conversations are hard, but as time goes on, I’m learning how valuable it is to share my family’s experience. My parents always kept me informed through my dad’s battle; I didn’t feel like they were keeping secrets or sparing me painful details, and that meant the world to me. But even after getting all of the available information, it still feels like there are pieces missing: Why did this happen? How could we have prevented it? It’s vital to spread awareness, because you never know who may be able to fill in some more of the puzzle. If you’ve experienced multiple myeloma, skip the maroon t-shirt this month, because by telling just one person you’ve done your part in the fight against this disease.