It was an average Friday in March of 2012, and Maureen Schroer was rushing through her typical weekday routine. After getting her young daughters Kylee and Mallory ready for school, she made the hour-long commute to the advertising agency in the city where she’d worked for 16 years, and was just kicking off an important client call when it hit – another one of the debilitating headaches and blurry vision spells that had started a few weeks prior.
At the time, Maureen and her husband Steve had attributed these handful of incidents to allergies and exhaustion. But on this morning, the pain was so acute that she couldn’t see straight, so she politely excused herself from the call, asking her clients to stay on hold while she took a quick bathroom break.
Maureen never made it back on the line.
On the way to the bathroom she collapsed, and when she woke up forty-five minutes later a team of paramedics was leaning over her.
“They brought me to the local emergency room, where the doctor ran some tests and made an initial diagnosis of stress and depression. He was writing my discharge papers when my husband suggested I tell them about the pain above my eye that had recently been bothering me when I coughed. That’s when the doctor stopped in his tracks.”
Instead of releasing Maureen, he scheduled an immediate MRI, which revealed a lemon-sized tumor on the base of her skull, pressing against her brain stem.
It looked like chordoma, but he insisted Maureen be moved to Emory to confirm the diagnosis. He explained that while chordomas are aggressive tumors, their slow growth usually allows patients time to assess different treatment options before deciding, but in Maureen’s case the situation was urgent and surgery would be required.
“I was totally in shock,” remembers Maureen. “We still didn’t know when I got to Emory whether it was definitely cancer, or something else. I remember the doctor telling me what a blessing it was that I had collapsed. The whole thing was surreal. At the time, I didn’t realize just how unusual my situation was, even for a cancer that is already uncommon.”
Forty-eight hours later, Maureen was undergoing a 12-hour emergency surgery at Emory. It was successful at removing 85% of her tumor, but there were complications, including a nerve palsy in her left eye. Because of her significantly weakened state, as well as complications caused by her pain medication, Maureen remained in the hospital for a total of 31 days, far longer than the typical stay for a chordoma patient. She later returned for two subsequent out-patient surgeries to address the nerve palsy.
“I had to learn to walk again. I had to learn to do a lot of things again. Steve, the girls, my mom, and my mother-in-law were my rocks, and Sharon Berlan – a survivor I met through an online search of the Chordoma Foundation – was my angel. She answered all our questions, helped us work through the practical and emotional challenges we were facing and became our friend. Having someone to talk with who understood what I was going through was invaluable.”
Over the summer, Maureen and Steve moved to Boston for two months so that Maureen could get proton beam radiation treatments at Massachusetts General Hospital with Dr. Norbert Liebsch. Being away from her daughters was by far the hardest thing she’s ever had to do, she admits. Missing little Mallory’s 5th birthday and first day of kindergarten was heartbreaking for Maureen, but she knew she had to be strong. And thanks to the generosity of Steve’s fellow firefighters at the Alpharetta, Georgia, Fire Department who pitched in to cover his shifts, he was able to be by her side the entire time. It was a true blessing and the best possible gift, she recalls.
Thankfully, the radiation was successful and she returned to Georgia that September in stable condition with a good prognosis. Dr. Liebsch continues to do her annual check-ups, and four years and five scans later, she’s still stable, with no new growth.
“I don’t really relate to the term ‘in remission.’ I always feel like I still have it. I HAVE cancer. It’s not past tense. But I don’t let that rule my life. It’s part of who I am, but it doesn’t define me. In fact, in some ways, I’m a much happier person now. It’s funny to think I’d be happier living with chordoma than in my old life, but that’s how it is.”
When she returned home, Maureen left her high-stress job at the advertising agency, a decision she admits she may never have had the courage to make without her diagnosis, and started devoting her time to things that fulfilled her such as family and volunteer work. She also created a champion page on the Chordoma Foundation website and began educating others about the disease and fundraising for research. It was both a cathartic way to share her story and an obligation she felt to be part of the solution.
Maureen credits Sharon as a driving force behind her fundraising and staying active.
“If we don’t do it, then who? she told me. That advice stuck. And when I started to tell my story, people came out of the woodwork – family, friends, elementary school classmates, former teachers, people in the town where I grew up. It was incredible. So many people wanted to help.”
Maureen admits that social media has its pros and cons, but she believes it can be an incredible force for good when used in the proper way. The chordoma champion fundraising page Maureen set up in 2012 to share her story and allow people to rally around her has raised more than $55,000 and she continues to receive an incredible response to her monthly posts on social media.
Today, Maureen is training to be a Chordoma Foundation Peer Connect guide so she can help other survivors navigate their own journeys. Always looking ahead to the next horizon, she’s also planning to coordinate a local fundraising event near her home in the Atlanta area, to complement her continued online efforts. Maureen’s positive outlook and generosity of spirit are now inspiring others in the same way Sharon first inspired her.
“Give chordoma the importance it deserves,” Maureen always reminds fellow survivors, “but don’t let it run your life. And when you’re feeling better there are two very important things that all of us can do to help – start a champions page and donate tissue. You owe it to yourself and every other person with chordoma. Even if you only ever raise $2, it’s therapeutic to tell your story and it’s easy to do. You don’t see it now, and it may take a long time, but trust me, there’s always a silver lining.”