Part of getting involved in advocacy and action is learning more about the disease and cause you are advocating for to improve research, treatment development, supportive care, and resources. Multiple myeloma is often a cancer very few have heard of, but once it touches you, you never forget it – as it has for Michael and his family. Due to improvements in diagnosing the disease, the number of cases of multiple myeloma diagnosed each year is going up, but so is the number of treatments available. Multiple myeloma has evolved into a chronic cancer, with survivors living many years after diagnosis. Life goes on, but it is a life with multiple myeloma. On top of managing his cancer, Michael has turned his diagnosis into action. Today, we share his story. I’m honored to have known Michael for much of his cancer experience and to call him a friend. Thank you, Michael, for all you do for yourself, your family, and the myeloma community.
“Your bones are moth eaten.”
That was Michael’s introduction to multiple myeloma. Just a few days earlier, he had taken a trip down the shore with his family. While body surfing, he got pummeled by a wave. It had happened before; he didn’t think much of it. But the pain in his neck persisted. He rested. He took over-the-counter pain medications. Nothing worked. He finally called his doctor and was sent for an x-ray.
After that, the medical workup was a whirlwind. He was first seen at his local hospital and then transferred to Penn (a large academic center). There was lots of testing—MRI, blood work, CT scans. The possibility that this was cancer never crossed his mind.
Then the neurosurgeon walked in and said, “we think you have Myeloma.”
Michael and his wife, Monique, had never heard of Myeloma. They were given some educational materials by the team. “We both read the same line at the same time…life expectancy less than five years.”
Only then did Michael realize this was cancer. This was big.
Fast forward ten years. Michael is alive and thriving with Myeloma. He had a stem cell transplant in December of 2011. He is in “active observation.”
Life has changed in so many ways for Michael since that summer day in 2011. “Even though cancer sucks, it has opened a whole different world. We’ve met some incredible people along the way we never would have met without cancer.”
Michael also got involved with the Leukemia and Lymphoma Society. He and his family have raised over $225,000 in the past ten years through their annual Light the Night Walks and Man Of the Year campaigns. He volunteers regularly with the LLS, giving mission speeches at board meetings and linking other patients with LLS services. He has become a passionate advocate for cancer care and research through his advocacy. He just won the National Advocacy Ambassador Award for his persistent and compassionate advocacy work on behalf of blood cancer patients. Without his myeloma diagnosis, he never would have done any of this.
Several years ago, due to a new lesion in his spine, Michael had to stop working. His new part-time job is managing his symptoms and his long-term, chronic diagnosis. “Not a day goes by without cancer being part of my life.” He knows he can and will live with myeloma for years. He knows it may come back. But Michael prides himself on living differently with cancer. His perspective has changed. “Life is different. I fill my days doing volunteer work, swimming, cooking dinner, and being a house dad.” These new roles only surfaced as a result of being diagnosed with myeloma.
Besides the LLS, Michael is one of ten myeloma survivors in America who is a Multiple Myeloma Journey Partner. This program provides outreach and education all over the country. These programs offer a “free, one-hour, educational program that gives people with multiple myeloma and their caregivers an opportunity to hear a trained Journey Partner share his or her personal experience of living with multiple myeloma and having an autologous stem cell transplant…[as well as] about helpful resources and the importance of considering a transplant evaluation.” Michael is honored to be part of this program. “I get to teach and talk to people about myeloma. If my one-hour speech helps one person…I’ve made a difference.”
Michael also recently has broadened his outreach with Myeloma Crowd by HealthTree. He is now a certified Myeloma coach, helping myeloma patients understand everything there is about their myeloma from a patient’s perspective, including blood tests, side effects, financial information, coping, mental health, and much more. Coaching is a no-cost immersive sharing of information between patients for about 6 months or as long as the coachee needs. You can learn more here
“Thank God I went to the beach that day…it probably saved my life.” Not only did it save his life, but it also changed it. Taking action, being active, and making meaning are important parts of coping with a cancer diagnosis. Michael and his family embody the meaning of Multiple Myeloma Action Month. Hats off to them for their dedication and passion toward a cause they had never even heard of ten years ago.