Our First Brain Tumor: Early Lessons Learned

Thursday, September 13, 2012 - 7:19am

It’s become a running joke in our family: “Hey, give us a break. We don’t know what we’re doing. After all, this is our first brain tumor!”

All families who come through the doors of Roswell Park Cancer Institute are rookies at this, to some degree. Including ours. After all, no one plans for cancer the way they do for college. And every cancer is different.

But still, a nagging sensation remains that we should all be better at this, somehow.

If you’ve been feeling this way, read on. 

Over the next several months, I’ll be sharing my family’s experience at Roswell Park Cancer Institute, from diagnosis to treatment, and everything that came after. My hope is to remind my fellow caregivers that they, too, have important stories to tell.

And while patients receive a treatment plan, we have to muddle through on our own. It’s no surprise that some of us end up feeling like we’re doing “it” wrong. Whatever “it” is. We deserve to hear that we’re actually doing pretty darn well.

I also hope to remind you that you are not alone is not just a comforting cliché. Cancer connects you to the rest of the world as few other diseases do. And while there is no shortage of scary misinformation out there, there’s also no shortage of skilled help and powerful empathy at your disposal.  With Roswell Park’s help, I hope to connect our readers with both.

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We were fortunate, in my family, to find out about my brother’s brain tumor early on. The circumstances were unusual. At age twenty-three, while sipping coffee with me in a South Korean coffee shop, my brother turned blue and blacked out, the result of a sudden seizure. He was stopping by to see me on his way from China to Australia. Riding with him in the ambulance through the streets of Seoul, where I was living and teaching at the time, I knew instinctively that this episode would change the course of both of our lives. (I later wrote a detailed account of this experience on my website, Speaking Konglish.)

The doctors in Asia were the first to suspect a tumor, but could not explain the implications in English. So, one week later, we flew my brother home to Buffalo for a biopsy.

In a biopsy, surgeons take and test a sample of a tissue, and, if it’s cancerous, remove the tissue. After going into surgery at Millard Fillmore Gates Hospital, David came out the other end minus one anaplastic astrocytoma. A Stage Three tumor, the same kind as Ted Kennedy’s.

Thanks to the seizure, they’d caught it early enough to operate. But many questions remained regarding how to keep it from coming back. Radiation? Chemotherapy? Some combination of the two?

Words like anaplastic astrocytoma roll of my tongue now, but they didn’t then. Trained as a reporter and raised as a big sister, I wanted to read everything I could about David’s prognosis, to take control of the situation.  Instead, I simply scared myself silly.

Soon, we learned tricks for managing the incoming avalanche of information. For example: keep a notebook from the start. Apply for government assistance and arrange for rides to appointments as soon as you can, to preserve your limited time off and resources. Dial in far-away stakeholders and invite nearby family members to doctor visits so everyone stays on the same page. Don’t rely too heavily on the Internets, your well-meaning neighbors, or the latest neon-colored cancer bestseller for information related to your diagnosis.

Most importantly, we learned to ignore the average prognosis and talk to the human experts in front of us. The ones holding David’s life in their hands. This was cancer lesson numero uno.

And boy, can David’s oncologist talk. Not just about cancer, either.

Now that David has gone from surgery to treatment, we meet with Dr. Mechtler monthly. Tall and elegantly attired, with an auctioneer’s speedy spiel and a politician’s handshake, the middle-aged Metchler strikes a memorable figure in Roswell Park’s neuro-oncology department.

Of course, our appointments always begin with a quick update on my brother’s most recent MRIs, blood results, and chemotherapy treatment plan. (He’s on Temodar, for the record.) But as my brother has returned to school, returned to skateboarding, returned to dating, the two of them often riff at greater length about these things. They’ve even got a routine going. 

“Hey man, nice hair. Now that it’s back, it looks like a mess. What, didja just wake up? The girls must love you, man.”

“Not as much as they probably love those shoes, doc. How much those things cost?”

From the beginning, Dr. Metchler has wanted to talk about life as my brother defines it. True, it’s life as it has been redefined by his diagnosis – but it’s life nonetheless, and his goal is to help my brother make the most of it. I don’t doubt that this has made a difference in his recovery.

This was lesson number two. When faced with cancer, keep your focus on living – as opposed to simply avoiding its opposite.

It’s a hard thing to do, but we’ve gotten better with practice.  After all, this is our first brain tumor. 

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I hope you’ll join us for the next installment in this series next month, when we take a look at the topic of Adjusting to the New Normal. Until then – be well!

Ryan Rose Weaver is a writer and teacher living in New York. Her younger brother, David, was diagnosed with an anaplastic astrocytoma in February 2011. He is currently being treated at Roswell Park Cancer Institute.