A Little Off the Top: the First Step in a Brain Cancer Journey

“Coffee.” This simple word seems so difficult to squeak out, yet it’s my first thought after brain surgery. Despite my head pounding, it is the most important thing in the world at the moment. Apparently, I survived the craniotomy for a possibly malignant glioma. So, hey, there’s my second thought. Can I count backwards by 7s from 100? “100, 93, 86, 79, 72, 65, 58.” Yes. I run other quick cognitive tests on myself. A-OK.

My surgeon walks in. Smiling, he says the surgery went well, but I have a temporary loss of speech. He reassures me and expects my speech to return within 48 hours. He continues kindly, yet matter-of-factly: during surgery, he encountered a more extensive tumor than what appeared on the baseline MRI and therefore required more time in surgery. Preliminary pathology indicates a more aggressive tumor than we had all hoped. (As in, we really hoped it would turn out not to be malignant—yet it was.) The final pathology report and DNA analysis will take a few days. It’s clear at this point, though, that it is a highly aggressive glioma and more treatment will be required beyond surgery.

“For now, don’t worry about that. You’ve done well. You’ve had a good result with the surgery, and you need to give attention to healing from the surgery,” he says, reassuring me even when delivering the direst of news.

This is sound advice. I’ve been through enough and am thrilled beyond words—dare I say speechless—to have come through surgery relatively intact. My gravest fear was not waking up as myself; to lose the critical thinking capacity of my brain where the tumor lurked. Having survived that, I’ll deal with the rest of reality later. More coffee, then back to sleep.

Twenty-four hours later, transferred to the neurosurgery floor, post-op recovery is going well and my voice is returning, though a bit gravelly. I’m drinking coffee like an addict. Caffeine appears to be something my brain needs to recharge. I crave a strong cup of Starbucks. My husband and son set out to get a cup for me. Returning with the coffee, something seems a bit off—it doesn’t taste right. I pull off the sleeve and see the cup is not Starbucks.

“What’s up, guys? Did you think my coffee tasting ability got scooped out with the brain tumor?”

“We couldn’t find a Starbucks.”

“How do you not find a Starbucks in NYC?”

I won’t even get into the discussion around how they found a Starbucks cup sleeve.

It is common to talk about living in the moment. As I continue recovery at home, I realize—probably for the first time in my life—I am genuinely living in the moment. No regrets of the past or concerns for the future. No worries about what cancer has in store or what has yet to be. I know the diagnosis is a malignant brain tumor with a limited life expectancy, yet death was never my biggest fear.

My greatest fear was that first step: the craniotomy in the frontal lobe area of my brain, with its potential complications. Its assault on my brain and what makes me me was potentially more devastating than dying. That impact could have shattered my family. Surviving the ‘frontal assault’ seemingly intact, I felt euphoric—the weight lifted from me both physically and existentially. The excruciating pain that plagued me for months on end was gone. I felt renewed and free.

My surgeon explained that for brain cancer patients, there is so much relief from their previously relentless pain that once the tumor is resected and the pain is gone, they feel absolute joy and relief.

There will be a long road of treatment—radiation and chemotherapy—ahead of me, but I am strong. I met the enemy, and it was not the cancer. It was my nightmares, my imagination, and my perceptions of the possible horrors awaiting me on the other side of the craniotomy. Confronting those tested my audacity. I’ve learned to trust and place my life into the hands of others—my care team—while continuing to advocate for what is most important for me and my family. I’ve faced the worst, recalibrated my responses, and, as with the strength of the titanium securely holding my skull together, come out the other side all the stronger for it.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.