Leukemia Research Foundation News

Living Each Day to the Fullest After a Difficult Prognosis

In early 2018, Joe visited his doctor for an annual physical. He underwent all the routine tests – blood pressure check, physical exam, and a blood draw. At the time, he was feeling great, eating right, and exercising regularly, so he expected a clean bill of health.

A few days later, Joe’s doctor called. His blood tests were abnormal. After additional testing, his doctor confirmed Joe had mantle cell lymphoma, a rare and aggressive type of non-Hodgkin lymphoma.

“Before my diagnosis, I lived a very full and productive life. I did things ‘the right way’ and looked forward to living a long time. I always felt that with cancer you generally have time to assess and make changes, to recalibrate. That wasn’t the case. My original prognosis was three years. Living with the fact that I now have a shortened life expectancy was and still is difficult for me to grapple with.”

The next three years for Joe were a blur as he underwent chemotherapy, a bone marrow transplant, and immunotherapy while simultaneously struggling to navigate the pandemic. Today, more than four years after his diagnosis, Joe is on the other side of treatment.

“By being healthy before my diagnosis, I came through treatment relatively unscathed. I had a great staff of doctors and nurses. Having a real connection with them made treatments something to look forward to instead of dreading.”

Throughout his journey, he has tried to live each day to the fullest, enjoying time with his family and his new life of retirement. He continues to be productive, volunteering his time to help other blood cancer patients as a member of the Leukemia Research Foundation’s Patient Advisory Committee.

“I don’t think many blood cancer patients get to ‘ring the bell,’ we have more of a hidden cancer, and I feel it is widely misunderstood. Being on the Leukemia Research Foundation’s Patient Advisory Committee has allowed me to share my experiences as a patient and give feedback for ways the Foundation can better support other patients and their families.”

Joe also hosts an annual golf outing in the Chicagoland area to raise funds for the Leukemia Research Foundation’s research grants program. To date, he has donated more than $40K to support blood cancer research into new and better treatments.

“Medical advancements are miracles, and they happen every day. The FDA continues to approve new treatments for blood cancer. To anyone just diagnosed, there is hope to live a long life.”

Joe with his nurse on his last day of treatment.

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