A New Life’s Work: A Multiple Myeloma Story

“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 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. 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.

Michael and his family at an LLS event

Fast forward five years. Michael is alive and thriving with Myeloma. He had a stem cell transplant in December of 2011. He is in remission.

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 has raised over $40,000 through their annual Light the Night Walks. He volunteers regularly with the LLS, giving mission speeches at board meetings and linking other patients with LLS services. He has become an advocate for cancer care and research through their advocacy. Without his myeloma diagnosis, he never would have done any of this.

Recently, 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 Action Partner. This program provides outreach and education all over the country. These programs offer “free, one-hour, educational program 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.”

March is Multiple Myeloma Action Month. Part of getting involved in advocacy and action is learning more about the disease and the cause 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.

In the media, it is often referred to as “bone marrow cancer.” It has touched the lives of many, including some very famous people including the first woman to run for Vice President of the United States, Geraldine Ferraro, and the man many turned to when news crises were occurring, Tom Brokaw.

Due to improved diagnostics, the number of cases of multiple myeloma diagnosed annually 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. The evolution of multiple myeloma becoming a chronic disease has led to a host of long term management issues for patients and caregivers.

“Thank god I went to the beach that day…it probably saved my life.” Not only did it save his life, it 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 towards a cause they had never even heard of just five years ago.