Cancer, in all its forms, very much appears to be insurmountable. But every day, there are more survivors, and every day, more research is being done to thwart its continuous stream of devastation. The rarest forms of cancer seem almost impossible to cure. Not only are they incredibly uncommon, but also research can be particularly challenging and expensive, which means finding the right support at the right time can be an awful lot like gambling. There are never any guarantees that the hard work involved will advance the research and no guarantees we’ll ever be one step closer to curing some of the worst conditions.
But those challenges do not stop the true heroes, survivors. Why should they stop anyone else? That is exactly the spirit behind the Iceland Cycling Expedition or ICE, organized by the International Myeloma Foundation. A group of 12 brave individuals, made up of myeloma survivors, their care partners, and world-renowned physicians, will undertake an incredible journey in the name of the “world’s largest and longest longitudinal research study,” meant to help diagnose, treat, and prevent myeloma.
This philanthropic event is the brainchild of Sylvia Dsouza, IMF’s Vice President of Development, and a strong proponent of strategic partnerships for the foundation. It all started with a simple idea, fostered when Yelak Biru signed on as IMF President and CEO — a 28-year myeloma patient — and brought Dsouza aboard. They initially intended to come up with a global expedition to put the IMF on the map, creating exposure not just for the foundation but also for the very cause they’re working to overcome, Multiple Myeloma.
Multiple Myeloma: More common than you realize
Myeloma is a type of blood cancer that forms in the plasma cells of the body — white blood cells. These cancerous plasma cells build up in bone marrow, crowding and locking out healthy cells, leading to a variety of complications. It’s actually the second most common blood cancer in the United States, despite being quite rare overall. It’s also remarkably common among African Americans.
Despite being a relatively common form of blood cancer, the symptoms often overlap with other ailments and health issues. People don’t regularly screen for it, as they should, and sometimes even health physicians overlook testing for it specifically, mistaking it for another issue.
“What is even more beautiful is [these survivors are] doing it for the myeloma community. They’re thinking about others who are going through the same journey. They want to find a cure.”
As Dsouza reasonably points out, “Typically when you go to your doctor, they are not thinking it could be blood cancer,” when you report some of the symptoms like aches, pains, persistent or worsening exhaustion, recurring back pain or bone pain, shortness of breath, repeated infections, headaches — a symptom of anemia caused by myeloma — and beyond. “They are giving you some sort of pain medication, and you come home and you’re done with it.”
“One of the things that we do at the IMF is to impart our patients and also educate our clinicians to say, ‘Hey if somebody is coming back to you again and again with a chronic headache, chronic fatigue, chronic bowel symptoms, chronic joint pain, muscle aches, send them for additional blood tests. See what’s going on.’”
She also explains that now multiple myeloma diagnoses are not as rare because people are getting screened for it earlier and more often. In other words, the cause is already advancing the research and helping people, ensuring that a diagnosis comes earlier and saving more lives in the process. Cancer, as you well may know, takes time to progress and develop, so the earlier you catch it — and the earlier the diagnosis — the higher the chances of a workable treatment and survival.
An awe-inspiring journey to end myeloma
To me, personally, one of the most inspiring aspects of ICE and the cyclist’s journey is that they are, in fact, working towards a major achievement or goal. During the entire trip, they will be pushing themselves and their bodies to reach that finish line. The reality is that they’ve all been training for this for months. It’s not something they’re just going to wake up one day and complete — there’s already a lot of blood, sweat, and tears backing this movement, not including the individual stories of the myeloma survivors.
When I touched upon this in a question, asking why Dsouza organized such a rigorous event, she shared insight as to why, exactly, this was the best way to go. Dsouza explains, “I put a lot of emphasis on the relationship-building aspect of [the fundraiser]. To me, money comes when people are invested in your mission and when people feel connected to your mission. When people feel like they are part of the community when they belong to something that they themselves are moving the needle forward.”
People want to be involved, especially the survivors, and they want to prove that you can not only recover from such a debilitating disease but also you can go on to live a truly fulfilled life, while still fighting to find a cure to lessen its total impact. They are so strong they’re fighting back. We should all aspire to be so extraordinary.
“For this group — especially patients — to be able to do a 40- to 60-mile bike ride each day that we are in Iceland is a huge, huge deal.”
“When I envisioned Iceland Cycling Expedition — #MyelomaICE — I wanted to take it with a three-pronged approach. The first one was the fact that bringing together a group of like-minded individuals with a common shared background and history in multiple myeloma, whether they are a patient, a partner, a care partner, a doctor, or a nurse. They all understand what multiple myeloma is, and what their individual journey is.”
“How do we connect them through a course of nine months — through training, through nutrition, prepping — and building a community through that? Through that group of 12 participants, how can I make it to 1,700, 17,000, 17,000,000?”
But as crucial as that journey and expedition experience is, it’s also important to gather the resources to fight back and advance research on that cure. “The second thing is the fundraising piece of it.”
Seen through the lens of the survivors, the term “awe-inspiring” is almost too tame — it doesn’t do their journey justice. These remarkable patients are achieving something virtually no one would ever fathom.
“Multiple myeloma [patients], when somebody is diagnosed with it, can be given as soon as three years to live. This group of people we are taking, I think the youngest survivor is about ten years into his journey, and the oldest is 28. It is a very debilitating disease. From the moment you are diagnosed, you have anemia, you have all the steroids and drugs that you’re given, and it’s extremely debilitating. It can literally put you out cold. You gain a lot of weight and fitness goes out into the park. You can’t even walk [sometimes]. You’re eating a lot, you’re sleeping a lot. Your life is completely at a standstill and your care partner’s life comes to a standstill.”
Even more shocking is when Dsouza points out that most people struggling with diseases like myeloma keep their experiences private. They don’t tell others their pain or share what they’re going through, sometimes even with their partners and spouses. This trip is a contrast in that regard, as well, serving as a more visible example of their struggles, pain, and hardships.
“So, for this group — especially patients — to be able to do a 40- to 60-mile bike ride each day that we are in Iceland is a huge, huge deal.”
“They have signed up for this, not only for themselves, to prove to themselves — like ten years ago I was told I was going to die in six months — and here I am, in this landscape, and this vista, which is as glorious, as beautiful, and as greedy as myeloma. With the lava fields on one side and the glaciers on the other, beautifully contrasting each other. That is what the life of these myeloma patients is. One day they wake up and they have a beautiful glorious day, the next day, they are like, I think I’m going to die today. For them to be able to do this is a huge accomplishment.”
Yet again, we are reminded that the cause is the true focus.
“On top of it, what is even more beautiful is they’re doing it for the myeloma community. They’re thinking about others who are going through the same journey. They want to find a cure.”
I know that I am extremely humbled as I imagine you, dear reader, feel, as well.
The IMF Iceland Cycling Expedition (ICE)
So, what’s next? When is the event and how can others get involved?
Kicking off on August 29th, the 12 brave participants will embark on their unforgettable journey on a bike ride through the gorgeous landscapes of Iceland. Major participants include Andrew Kuzneski, Dr. Cristina Gasparetto, Dr. Mark Sievert, Dr. Rafat Abonour, Dr. Saad Usmani, Jered Haddad, Laurie Kuzneski, Leo Dierckman, Martina Pesaresi, Nancy Bruno, Shawn Twigg, and Thomas Goode.
They’re not alone. They will be supported by assistive vehicles, tour guides, and IMF staff, so they’re not being thrown to the wolves here. But make no mistake about it, that does not mean the journey is any less rigorous or challenging. They will be expending every ounce of their determination and resilience to complete the ride, just as they have pushed through the disease.
If you’d like to support these brave individuals on their quest, you might consider donating to the cause, and know that everything helps, no matter the amount.
