These days, it seems every charity or cause is organizing a fundraising walk or run. This weekend I know of at least four of these walks taking place near my house. One of those events is the Center for Special Surgery Race for Hope. This race raises money to help uninsured and underinsured patients with a brain, head or neck cancer diagnosis in the Capital Region of NY.
Prior to 2010, my knowledge of brain cancer was cursory at best. I knew the word “glioblastoma” but not much else. Glioblastomas are tumors that come from astrocytes – the cells that make up supportive structures in the brain. They are usually highly malignant because they are supported by blood supply and they reproduce quickly. While it is easy for glioblastomas to invade brain tissue, they rarely spread to any other part of the body. There is no exact cause known and they can be difficult to treat. For adults with aggressive glioblastomas, the average survival rate is 14 months and only 30% of patients live two years past diagnosis.
I got a crash course in glioblastomas when my sister Mary Jane received her diagnosis. She had been having headaches for weeks, and they were getting progressively worse. On April 2, 2010, when she was unable to get out of bed, her husband called the ambulance and she was rushed to the hospital. After a CT scan, she was brought to surgery to remove the tumor shown in the images. The surgeon’s face was grim when he came to speak to all of us gathered in the waiting room. His initial prognosis was not hopeful, and it would be a week before the pathology reports confirmed his initial suspicions of glioblastoma.
Mary Jane faced her terminal diagnosis like she faced everything else in life, with determination and quiet strength. She told everyone that as long as she was alive, she was going to LIVE. And for the next 18 months she most certainly did – traveling, going to the gym every morning, making music with the community orchestra and choir, playing with her granddaughter, and cross country skiing.
Living with a chronic health condition is expensive, and the last thing anyone needs to worry about while facing a terminal diagnosis is the cost of the treatment that is providing more precious time with loved ones. Mary Jane was fortunate in that she had good insurance and she received excellent care throughout her cancer journey. She realized that there were others who did not have the same good fortune so when she learned of the Race for Hope she adopted this charity as her own. Her daughter, my amazing niece Karen, took on the challenge and organized her siblings, family and friends to form Team MJ. Every September, we don our team shirts and help raise funds for this foundation.
The race is a moving and emotional event. Everyone gathered is there because we have all been touched by brain, head and neck cancer. Some race because they are inspired by someone living with cancer. Some participate because they have endured treatment and want to give assistance to others. Some, like Team MJ, race in memory of a loved one.
Yesterday, Team MJ gathered once again for the Race for Hope. Our yellow shirts were bright in the fall sunshine. The race is a family event with participants of all ages and the spectators cheer equally for everyone. The youngest participant, an energetic 5 year old, crossed the finish line to great applause – as did the oldest participant, one of Team MJ’s own who is a spry 88 years young.
My eyes welled up as I sat with Mary Jane’s grandchildren and oldest daughter cheering on the runners from all teams as they finished. I know Mary Jane would be proud of her children, family and friends who continue to come together to promote a cause she valued. We owe it to those families just learning about glioblastoma to keep racing. Because everyone deserves to LIVE as fully as they are able while they still have time.