Voices Across America

My Patient Story

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Michael

State: Pennsylvania
Congressional District: PA01

Diseases

Blood Disease, Cancer, Chronic Pain, Rare Disease

Issues and Challenges

Michael has encountered: Copay Issues, Oral Parity, Out of Pocket Costs, Step Therapy, Surprise Billing

My Story

I was 51 years old when I was diagnosed with a rare blood cancer - multiple myeloma - in 2011. I endured many courses of chemotherapy, radiation and an autologous stem cell transplant in the short course of just over a year. Post-transplant, it took about three months before I felt well enough to return to work fulltime as a department store manger.

Prior to being diagnosed with multiple myeloma I had virtually no symptoms until a tumble in the waves at the beach resulted in a fractured neck. In reflecting back, months earlier I did have some unexplainable fatigue and pain in my ribs, but all tests at that time were inconclusive. This time, however, the results showed bones this doctor described as “moth eaten". My wife and I were completely shocked and clueless—we didn’t even know this disease existed.

The hospital staff could see that my wife and I were like “deer in the headlights” and made all the arrangements for what they told us was the proper protocol.

Have these past 9 years been easy? No, not in a chance. There are the countless blood tests (every 6 weeks), body scans, MRI's, CT scans and more, along with daily doses of medications to keep my cancer at bay. What have I learned from all this....

Through the course of the past 9 years of fighting this incurable cancer I have learned to become my own advocate for improved healthcare and now I raise my voice with multiple organizations (IMF, PHAN, LLS, BMTINFONET & more) as an advocate for change.

My Motivation and Inspiration

Why would I put myself out there? Its easy...
Few can imagine the terrifying and bewildering shock of receiving a certain death sentence. Only those who have shared my same experience can know what it’s like to awaken to this fate every day of the last 9 years of your life and having it keep getting indefinitely postponed. Faced with this fate, I made a conscious decision to live each day I have left to the fullest and devote my life and energies to advocate for change in healthcare, education of Multiple Myeloma patients, and finding a cure.

Only a cancer patient truly knows the pain, fear and suffering one endures to become a cancer survivor. I have taken this cancer experience and used the painful lessons I have learned to selflessly help other cancer sufferers who can only be helped by someone with the understanding and success in the fight. I HOPE my efforts have brought a light back into the lives of many who find it hard to HOPE (it IS my favorite word) anymore. I try to be an inspiration to people who know their cancer is terminal, yet can see the amazing HOPE and joy in my life and a courageous man who is never going to give up his fight.

I was always known as a ‘can do’ guy; the guy with boundless energy, who was always involved in every community activity. After cancer, I became the ‘will do’ guy; the guy who has decided to fight cancer every step of the way by determining what I will do, and then determining how to achieve goal after goal. Setting goals is so very important to my life. Seeing my daughter graduate college, done!, seeing my son graduate high school, Done! next up seeing my son graduate college, soon! and then walking my daughter down the aisle! and then maybe some grandkids!

I am a dedicated volunteer, I became a multiple myeloma journey partner ,https://www.mmjourneypartners.com/ because, “I like to give back. If I can help just one other person navigate this tough disease and learn more about the stem cell transplant process, then I’m a happy man.”

There are two things that motivate me daily, HOPE & courage. Every day, no matter what the struggle is, I somehow summon the courage to go and do the things I told myself I ‘will do’, to advocate for change and find a cure for myself or someone else. I THRIVE NOT TO JUST SURVIVE EACH DAY!!

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