Alan Stephenson joins the multiple myeloma warrior podcast where he shares his story. For Alan, he likes to compare the feeling of finding out you have multiple myeloma as a gut punch. He acknowledges it is difficult to navigate different multiple myeloma treatment options, building your family and medical support system, and figuring out how to pay for these treatments. Alan recommends checking out Patient Connect, a place where you can connect with other multiple myeloma patients, find multiple myeloma centers of excellence, and any ask question you can think of for Multiple Myeloma.
Alan Stephenson, a resident of Louisiana, shares his compelling story of resilience on YouTube also. He’ll discuss the importance of finding a community, and how he turned his journey into a source of hope for others by building the “Multiple Myeloma Warrior Community” on Facebook.
Life Before Diagnosis
Alan is a "good old country boy" from Louisiana. Alan enjoys a very active lifestyle filled with sports, hunting, fishing, motocross biking, and more. His early years were marked by many adventures, often pushing his body to its limits. Like many, he attributed his back pain to aging and the wear and tear from his youthful activities.
Despite his active lifestyle, Alan had a strong belief that unless "the bone's not showing, it doesn't hurt." This mentality kept him from seeking medical advice early on, even as his pain escalated. His family, including his two sons and a daughter, often heard this saying, and it became a running joke in their household. Now, Alan (a grandfather) loves spending time with his family, and doing the same activities like camping, hunting, fishing, and more.
The Turning Point
In March 2016, Alan's back pain reached a breaking point. After a sudden sneeze knocked him to the floor, he realized he couldn’t ignore it any longer.
One week later, barely able to move, Alan finally sought help. His primary care doctor ordered an x-ray, revealing fractures in his vertebrae and significant spinal damage.
Jokingly, Alan asked if it could be something serious like bone cancer. A week later, his worst fears were confirmed—he was diagnosed with multiple myeloma. The cancer had caused fractures in nearly every vertebra, along with lesions throughout his body. Alan’s life changed all in a moment.
Connecting to Specialized Care
One thing you’ll notice is Alan is a big proponent of Centers of Excellence (COEs). COEs are where multiple myeloma specialists provide the best care for multiple myeloma. Alan was referred to the University of Arkansas for Medical Sciences (UAMS), one of the leading facilities for multiple myeloma treatment. He highly encourages people to go find a multiple myeloma specialist, instead of a local oncologist. Alan notes that those treated by specialists often fare better than those who rely on local oncologists. His experience reinforced the idea that seeking out experts in the field can significantly impact treatment outcomes.
UAMS's approach is known to be aggressive, aiming not just to manage the disease but to cure it. Alan underwent a series of treatments, including a regimen known as VDT PACE, which involved a combination of Velcade, dexamethasone, and thalidomide. He recalls the challenges of living with a portable medication pump that delivered treatment continuously for days.
Stem Cell Transplants and Recovery
After completing his initial treatment, Alan faced the daunting task of undergoing two stem cell transplants. He described the experience as both challenging but also transformative. The first transplant was particularly tough, with significant side effects, including temporary hair loss and fatigue.
Despite these challenges, Alan's attitude remained positive. He focused on the support from his family and the medical team at UAMS, which helped him navigate the rough patches. His determination to stay active and engaged in life propelled him through recovery, even as he faced setbacks like infections and complications.
Building a Community
After his diagnosis, Alan became involved in a multiple myeloma facebook community. It was somewhat negative, and he believed there should be a community that is supportive and optimistic. He founded the "Multiple Myeloma Warriors" Facebook group to create a supportive environment for patients and caregivers. The group quickly grew, attracting nearly five thousand members in just a few months. As of now (a few months after recording the podcast episode), there are now a whopping 8,000 members!
Alan's vision for the group was to foster a positive atmosphere where members could share their stories and uplift one another. He emphasizes the importance of maintaining a hopeful outlook, even in the face of adversity. The group has become a space for encouragement, camaraderie, and collective strength. The group also has “Forget Multiple Myeloma Friday” and “Thankful Thursday” where members share things they look forward to on Friday / people or things they are thankful for on Thursday.
The Importance of Attitude
Alan believes that one's attitude can significantly influence the journey through illness. He encourages others to focus on the positive aspects of life, even when faced with significant challenges. His mantra is to look for the light in dark situations, reminding others that hope can be a powerful motivator.
Throughout his journey, Alan has shared humorous anecdotes, like the time his mustache fell out during treatment, to remind others of the importance of laughter and lightheartedness. He believes that these moments not only help him cope but can also inspire others to find joy amid their struggles.
Continuing the Fight
Alan's treatment journey has led him to a place of remission, but he remains vigilant. He continues to participate in his community, sharing his story and encouraging others to seek specialized care. His experiences highlight the importance of perseverance, community, and the belief that there is always hope, no matter the diagnosis.
As he reflects on his journey, Alan emphasizes the need for awareness and education regarding multiple myeloma. He strives to be a beacon of hope for those newly diagnosed, urging them to connect with specialists and seek out supportive communities.
Alan says to find a multiple Myeloma specialist, and be sure to join Patient Connect, where you can meet other people who have multiple myeloma.
Conclusion
Alan Stephenson’s journey through multiple myeloma is a testament to resilience and the power of community. His story serves as a reminder that while a cancer diagnosis can be overwhelming, it can also lead to unexpected connections and a renewed appreciation for life. By sharing his experiences and fostering a supportive environment for others, Alan is not only transforming his own narrative but also inspiring countless others along the way.
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