Rewriting the brain cancer narrative
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Stepping into the shower one morning in Chicago before Thanksgiving in 2011, Rex, a lifelong musician who’d recently turned 60, inexplicably fell, bumping his head on the way down.

An hour later, a CT scan at the local hospital revealed a fried-egg sized mass in the left frontal region of Rex’s brain.

The name for that mass, an oligodendroglioma, was the first word on a list of many that would have to be learned as Rex and his family began to write a new story for their lives.

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Across the border in Wisconsin, Steve, a faithful husband, a goofy, fun-loving dad to two daughters, and his grandmother's favorite, was also dealing with brain cancer, an astrocytoma, initially diagnosed in 2004. One daughter, a scientist, spoke the language of science, and used that skill in an attempt to quell her and her family’s anxieties.

Anyone confronted with the words brain tumor knows the fear and bewilderment associated with learning a new language under duress.

In one swift moment, families can be thrust from firm stable ground into chaotic quicksand with no escape. Cancer is a plot twist that requires agility in writing new narratives for the patient and their loved ones.

The disease is decidedly a community affair. When a person gets sick, everyone in that person’s sphere is impacted, making the responsibility of writing new narratives a shared one.

May is Brain Tumor Awareness Month — a time of increased visibility for the extended community committed to better treatments and cures for people living with brain cancer. Some of this work involves translating the language of disease into action. 

This process covers everything from learning medical terminology and the latest treatment protocols, to participating in insurance claim processes and holistic wellness approaches, to acting on legislation that will impact scientific advancement and healthcare.

To that end, there is another chapter being written for Rex, Steve, and their support systems that could have disastrous effects. The new Republican healthcare plan has passed in the House and now moves on to the Senate.

With this plan, an insurance premium for a 40-year old with brain cancer could go up as much as 1800 percent. Consider what this means for two men in their sixties.

The healthcare legislation coupled with the Trump administration’s proposal to slash the National Institutes of Health’s 2018 budget by 20 percent means that people with pre-existing conditions like Rex and Steve could face the double-whammy of a decrease in funding for life-saving discoveries as well as skyrocketing insurance costs. Congress recently voted to salvage funding for the NIH through 2017, but the future of this agency is still uncertain.

For many of the nearly 700,000 Americans living with brain tumors, this looks like the tipping point when a narrative begun with an impending sense of doom becomes a horror story.

Trump’s 2018 budget requests undermined critical scientific research and the decision to do so is incredibly frustrating.

Science is not the villain in this tale. 

Cancer is the villain, and science has been the sword and shield that has helped us conquer and survive.

After Rex’s diagnosis, he and his family faced a handful of crises including four surgeries, three of which were the result of brain infections. Surgery wasn't an initial option for Steve because of the location of his tumor, so only radiation was prescribed. "Keep chemotherapy in your back pocket," his doctor said, "it isn't very effective yet, but research is continuing."

And continue it did.

Incredible biomedical research is advancing our knowledge of brain tumors, which will inevitably lead to dramatic and life-changing therapies. In fact, genetic analyses of brain tumor cells led to a greater understanding of survivability and treatment for Rex and Steve. 

As it turns out, they both had two important genetic mutations that made their tumors more responsive to treatment.

It is imperative that research on brain tumors continues. During this month, while we are amplifying the voices of people impacted by brain cancer, you can contact your government representatives and advocate for healthcare and for science. 

Let your Congressmen and women know you support scientific achievement through the funding of federal agencies such as the NIH.

There are more ways to get involved. If you or a loved one has been recently diagnosed, there are channels of support available. Contact the American Brain Tumor Association and the National Brain Tumor Society. Donate, advocate, and share your story. 

If we work together, despite having to learn new languages, we can write the next chapter in the brain cancer narrative with hope, grace, and courage.

 

Kristin L. Krueger, Ph.D. is an Assistant Professor of Biological Anthropology at Loyola University Chicago, and is a Greenhouse Public Voices Fellow through The OpEd Project. Steve is her beloved dad. Amy M. Wilkinson is a dance maker, teacher, mentor, and Advanced Lecturer at Loyola University Chicago, with 20 years experience in dance performance and education. She is a Greenhouse Public Voices Fellow through The OpEd Project. Rex is her father.


The views expressed by contributors are their own and are not the views of The Hill.