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Guest Blog: The Powerful Platform Offered by National Brain Tumor Society

 

 

 

 

 

 

 

 

 

 

“It is very unlikely that you will not have a recurrence,” my neuro-oncologist said softly, leaning in to fold his hands together, interlocking his fingers, “but you have many positive prognostic indicators in your favor, including your age, IDH1 mutation status, and general good health.” With this information—vague and uncertain to a newly diagnosed patient, a novice in this space, my  nurse reached across from her chair to grasp my hand and my wife’s, one hand in each of hers, and she squeezed. The nonverbal communication conveyed more than words.

I am a recipient of the devastating diagnosis: glioblastoma.

I am 35-years old. I enjoy generally good health. Indeed, the recurring joke I tell to break the ice is, “other than, you know, the brain cancer, I’m very healthy.” My wife and I have three young kids, all boys, now six-years old and younger. At the time of diagnosis, I was an instructional design lead, overseeing a team of content developers at a medium-sized training and development contract firm. I hold a master’s degree in Philosophy, with a focus in the philosophy of science. Days before surgery, my neurosurgeon said to me, “I cannot believe the person I saw on those MRI images is the same person who is now sitting in my office,” ostensibly because I was functioning at a very high level, despite the 71mm primary brain tumor in my medial-right parietal lobe.

After enduring months of (undiagnosed) seizures, episodes of weakness and sensory issues impacting the left side of my body, and urging my general practitioner to continue ordering tests to get to the bottom of things, I was ordered to a stat MRI, which would reveal the mass and put in motion events leading to my diagnosis.

“Doc, do what you need to do, put me in a wheelchair, if you have to, but please protect as much higher level cognitive processing as you are able,” I naively pleaded to my neurosurgeon. A craniotomy and surgical resection, while I remained awake to maximize debulking and minimize loss of function, was the course of action recommended by the hospital’s tumor board. “That was a good procedure,” I reported to my wife before falling into a deep sleep in the neuro-ICU following surgery.

Twenty years younger than the median age of diagnosis, pushing through seizures at my cubicle, enduring an awake craniotomy, and returning to my favorite philosophy texts slowly but surely as I worked to recover lost function in the brain trauma unit of an inpatient acute rehabilitation facility, I felt compelled to share my experience with others.

I am responding to a sense of duty to speak on behalf of others in the brain tumor community who, for one reason or another, are not able, are not confident enough, or candidly, are no longer living, to speak for themselves. National Brain Tumor Society (NBTS) provides the platform for patients, survivors, caregivers, and all those millions of folks who are impacted one way or another by the nearly 700,000 Americans presently living with a primary brain tumor, and the nearly 80,000 more who are diagnosed annually, to tell our stories.

Weak with fatigue from radiation and chemotherapy, steadying my gait-instability with a cane because of tumor invasion in my motor and sensory cortex, and pre-planning activities to mitigate ongoing focal seizures, I feel my strongest telling my story, building relationships with newly diagnosed patients, survivors, and caregivers, and sitting in the congressional offices of our elected officials making salient and urgent the needs of the brain tumor community. These experiences, spinach to my Popeye, are made possible by NBTS. Our annual advocacy event, Head to the Hill, where we have a voice and presence in Congress; our hundreds of local community and signature events around the country where we raise awareness and dollars to fund research; our annual Scientific Summit where thought leaders in the neuro-oncology research space collaborate to advance understanding and treatment of brain tumors; the decades-long partnership with the Society for Neuro-Oncology (SNO) where NBTS does its part to support our clinical partners—all of these events and activities are made possible by NBTS, the tireless work of our advocates, and the generosity of our donors.

My kids, six-, four-, and two-years old, may have to say goodbye to their dad at tragically young ages. If I become an outlier in the brain tumor community living, let’s say, ten, twelve years, my oldest son will still only be 15- or 16-years old when I pass.

Friends, we can do better. We must do better. NBTS knows that we will do better because folks like me are fighting on the front lines to raise awareness, to raise money, to transform brain cancer from a deadly disease to a chronic, manageable condition, and yes, friends, ultimately to find a cure.

Please join us, our tent is big, our obstacles are great, but we are better and stronger together.


Adam Hayden is a philosopher of science, writer, speaker, and person living with advanced brain cancer (glioblastoma). Adam sits on a patient and caregiver advisory group with the National Brain Tumor Society, he co-moderates a monthly brain tumor Twitter-chat (#BTSM), and he blogs at http://www.Glioblastology.com. Adam is married, with three young children and lives with his family in Indianapolis, IN

  • Louise Cradick

    Truly inspiring Adam. May you be that person who is the one to live a long and healthy life. I was so happy to meet you and your wife at the Summit in Boston. Looking forward to seeing you both in Washington this spring. Louise from Chicago

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