Myeloma Was Not the End of My Story

Myeloma patient Alex Clark explains why myeloma patients need to live the life they love

26.07.2016   |   13:44 AEDT

Athletic, 6-foot-5-inches and in his 30s, Alex Clark is not the typical cancer patient. Clark is living with multiple myeloma and is eager to share his thoughts on how myeloma patients can spread awareness of this rare disease, the invisible mechanics of cancer culture and what is troublesome about the healthcare system today.

How long ago were you diagnosed with multiple myeloma? How has your life changed since then?

In late 2011, after ignoring symptoms of myeloma for about 10 months or so, I finally dragged myself into the emergency room. I was an overactive 26-year-old who thought that he was invincible. Some friends and I had climbed Mt. Baker in Washington about a month before I collapsed in the ER. When I got home from that trip, my body felt like it was crumbling to pieces. By the time I was finally diagnosed, I had lost 60 lbs, my heart rate was dangerously high, and my kidneys had failed. I avoided doctors almost to my death. But I’ve been lucky enough to come out on top. I’m the same person, I’ve just learned to slow down and be more present to what’s going on in my body. I place a higher value on subtle beauty.

Alex Clark

Multiple myeloma patient Alex Clark continues to enjoy camping and being outdoors despite living with a rare disease. Source: Alex Clark

Were you able to enjoy the outdoors again?

After treatment, I went into remission and the only thing that I wanted was to be outside, to be self-reliant. I road-tripped back to Oregon to reclaim my life and spent six weeks in the woods hiking, backpacking, camping, climbing peaks and talking to nature. That was the best medicine for me. Treatment keeps me living, but nature gives me life. Your perspective changes monumentally when you become a patient. You end up more self-focused and inward looking. The wild always reminds me of my insignificance. It provides an important perspective about how fragile our lives really are.

Do you think the people around you understand what you are going through?

Not really. I don’t think many people actually know what myeloma is. When I tell them I’m going to the Mayo Clinic for myeloma treatment, I usually just whittle my story down to “I have cancer.” The conversation can get longer and be more melancholy than most people can handle. The specifics of myeloma get cumbersome. Even I don’t fully understand what’s happening to me. Luckily, I have some amazing doctors on my team who understand this disease better than anyone ever has in the history of medicine.

Cancer is scary. Most people want to plug their ears and pretend it’s not there. So I’m trying to use my voice to call attention to it.

Do you think the patient voice is important in the fight against myeloma?

Cancer is scary, and most people want to plug their ears and pretend it’s not there. So yes, I feel like it’s important to use my voice to simultaneously spread a both a sense of urgency and a feeling of calm. We’re dealing with this. The more we talk about it, the quicker we can find solutions. Patients are so much more than numbers on a spreadsheet, but if you don’t speak up it’s easy to become a statistic.

Were there people who helped you in your fight with myeloma?

People like to tell me I’m so brave for fighting cancer. But to be honest, I don’t feel like I’ve done a single thing. I lie in bed and take medicine. The doctors and nurses who see the human effects of this disease on a daily basis, they’re brave beyond comprehension. I sometimes imagine myself lying in a hospital bed and my disease as this specter coming to attack me. But it slams into my army of nurses and doctors. Cancer has introduced me to some of the world’s most caring, brilliant, beautiful souls. I owe them my life.

Does every myeloma patient you know have access to great doctors like you?

I doubt it. I’m incredibly lucky. It blows me away that, as a society, we can still deny a person access to the system because of financial or logistic obstacles. If we truly have the best healthcare system in the world, why do we allow people to just disappear rather than treating them as a valuable resource? With every new case we learn more about myeloma and yet people still treat proper healthcare like a privilege reserved for those who deserve it. Healthcare is a human right. We all deserve it. The way people still debate this is insane.

Alex Clark on mountain

While climbing a mountain in 2011, Alex Clark experienced pains across his body that he now recognizes as the first symptoms of multiple myeloma. Source: Alex Clark

Are you optimistic about your future?

Of course! When I was first diagnosed in 2011 there were only a handful of treatments. But each year, I’ve seen more myeloma treatments being investigated and made available. And that gets me excited about the future. I don’t panic. I live my life and take solace in the fact that cancer is not a death sentence. In a lot of ways, for me, it was a blessing in disguise.