Cancer is brutal. Period. End of sentence. And also true, brain cancer is brutal in a way that is unique to any other cancer or disease. Brain cancer is a heartbreaking reminder that the mind-body connection isn’t some mythical, magical concept discussed in yoga classes around the world. A diagnosis of brain cancer forces you to come to terms with the fact that the parts of you that you thought were untouchable by disease—your sarcastic sense of humor, your love of spicy food and sunny days, your unique, intangible you-ness, are in fact vulnerable to something tangible. That the hard-to-define spark in the person you love most in the world is created by an organ—and when that organ is attacked, that spark fades, that person ceases, even when they are still standing right in front of you.
Until 2016, I’d never heard the words, “Go Gray in May.”
I hadn’t been aware that May was Brain Cancer Awareness month.
And, I had no clue that cancer, when it affects your brain, attacks the very thing that makes you into you, and even a benign tumor in a brain can be devastating.
That’s all true for a few reasons. One, just the word “cancer” is scary. Add in the “brain” and it’s not a term I’m casually searching for during a late night Internet hole. Two, I had no reason to know anything about brain cancer until 2016, when my husband was diagnosed with Glioblastoma, a particularly vicious and aggressive form of brain cancer; and that year I learned more than I ever wanted about what it means to “Go Gray in May.”
And three, brain cancer is just not on the radar. Despite taking the lives of public figures, like U.S. Senator John McCain and presidential candidate Joe Biden’s son, Beau Biden, brain cancer is rare—accounting for only about 1.4% of all new cancer cases in the U.S. This is good news for the general public, but not necessarily for creating large-scale awareness.
Since 1971, “there has been an overall increase in survival of less than 10% for people with a high grade brain tumour, one of the poorest improvements across all cancers.” Studies have shown that many of the deadliest cancers receive the least amount of funding. And brain cancer, Glioblastoma in particular, is one of the deadliest. With a five-year survival rate of just 22% for adults aged 20-44 (which drops to 9% and 6% for adults ages 45-54 and 55-64, respectively), a diagnosis of brain cancer could feel like a death sentence, like the beginning of a clock ticking down.
Awareness campaigns help. Funding helps. Hope helps.
My husband received his diagnosis on June 8, 2016. I remember how the words felt, the bleakness that followed the diagnosis. I remember the doctor who told us to get our affairs in order because the survival rate was dismal, and I remember refusing to go down that path because he deserved better than hopelessness. We all do.
So we found reasons to hope. Because for us, hope meant believing he was more than a number or percentage, meant remembering even a small chance of survival is a chance. We found clinical trials with promising results that were possible because of funding, and studies that helped build our understanding of brain tumors—particularly the molecular markers that might make a difference in his prognosis, that might help mean the statistics don’t apply to him—which were possible because of awareness campaigns that brought the brightest minds to the field.
We were among the lucky few to be enrolled in the poliovirus trial, which was featured on 60 Minutes and felt like the miracle we were looking for. It wasn’t our miracle, but it might one day be someone else’s—if we keep bringing awareness to this disease.
Bringing awareness to brain cancer patients, means also bringing awareness to one of the hardest to hear parts of brain cancer: pediatric brain cancer.
The most common solid tumor that affects children and adolescents is a brain tumor, and close to 5,000 kids are diagnosed each year. Survival rates vary among all the different types of brain tumors that might affect children, and many times statistics aren’t available because the tumors are rare or hard to classify.
This year, approximately 80,000 people will be diagnosed with a brain tumor. Nearly 16,000 people will die. In the in between, they will look for reasons to fight and hope and believe that the miracle cure is just a day away.
There are ways to help. Donating and supporting the efforts of The American Brain Tumor Association (ABTA) and The National Brain Tumor Society, which are two key organizations working to provide research funding and support to families, is one.
Spreading awareness is another. “Go Gray In May” is a campaign to raise funds for research and trials, but also to ensure that no patient or family affected by brain cancer feels alone. It’s a movement with a hashtag to help families find crucial resources and ways to connect with other people who understand, because a brain cancer diagnosis can shrink your world to the size of a doctor’s office—but it doesn’t have to be that way.
Brain cancer victims, and families, need hope, support, and acknowledgement. So they know they should fight, because the world is fighting alongside them. So they know they can fight, because they have a real chance to live.
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