Joan Burge

“This isn’t real. This is a bad dream.” Joan Burge was in the emergency room, and she was in disbelief. A severe headache brought her into the ER that day, and the scan to investigate the cause of her pain had just revealed a growth in her head. “This isn’t happening,” she thought. “I was perfectly healthy, and then my world just turned upside down.” That night in the ER was July 4, 2014. Joan can remember hearing fireworks in the distance.

The next day, with the help of her sister, Joan went to another hospital for a second, more detailed MRI. “I was out of it. Fortunately, my sister Gina knew what to do and how to talk to the doctors to get answers,” she says. “The surgeon there told us there was no hope — it wasn’t treatable,” Joan recalls. But Gina encouraged her to get a second opinion with skull base surgeon Dr. Daniel Kelly, who laid out a plan to resect her tumor.

As the surgery approached, Joan’s symptoms worsened significantly. She was diagnosed with bacterial meningitis. “My doctors think my tumor grew large enough to cause an infection in my sinus,” she says. “I was ready to get that ugly tumor out of my head, but my surgery was delayed while the meningitis cleared up.”

After recovering from meningitis, Joan underwent a 13-hour endonasal endoscopic surgery with Dr. Kelly. “I had 100% confidence in my medical team, and I was relieved they didn’t have to cut into my head,” says Joan. The surgery was a success, removing the majority of the tumor with no need for subsequent radiation.

Recovery took about four months, but Joan was encouraged by her providers and the support she felt from family, friends, and clients, who decorated her room with hundreds of get-well cards. She was also driven by her desire to return to work as a business owner with frequent public speaking engagements. “I was looking forward to the opportunity to give a talk at the Gates Foundation a couple of months after my surgery, and that was a huge motivator for me while I was working on my recovery plan,” says Joan. Happily, she was able to deliver the speech: “I barely made it through, but I don’t think anyone could tell that it totally wiped me out,” she says.

Joan’s chordoma diagnosis has now been in the rearview mirror for more than eight years. With the benefit of hindsight, she offers numerous suggestions for newly diagnosed chordoma patients:

• Arm yourself with information, but don’t overdose on it. “I didn’t have the capacity to take in a lot of information about chordoma, because everything happened so fast,” she says. “Loved ones might try to send you various resources, and that can be overwhelming and scary,” she adds. “Try to strike a balance between being informed about the decisions in front of you, but not taking in more than you can truly digest.”

• Connect with other chordoma patients. At the hospital where she underwent surgery, Joan was encouraged by meeting a chordoma survivor who was another patient of Dr. Kelly’s. “She was happy and bubbly and healthy,” she says. “Talking with people who’ve gone through the same thing and come out the other side can provide a lot of hope.”

• Stay organized. Joan’s business is centered around training and coaching administrative professionals, and she notes that many of those skills, like scheduling appointments and keeping various pieces of information organized, can come in handy as a cancer patient. If possible, she suggests bringing a friend or family member to appointments to help take notes. (We offer printable resources that patients and caregivers can bring to doctor appointments to help keep track of your questions and your providers’ answers, like Questions to Ask about Treatment and Survivorship Care Plans.)

• Find your own sources of inspiration and hope. “Reading inspirational books was a helpful coping mechanism for me — books that talk about struggle and going through tough times,” Joan says. “I also pray a lot; I have a connection with my source that I can go to.”

Joan doesn’t suffer from ongoing physical side effects as a result of chordoma, but she does experience anxiety leading up to annual MRIs. “I’m getting better at staying calm, but when I walk into that radiology building and get ready to go into the machine, I always get that pit in my stomach like, ‘here I go again.’ It stirs up some bad past emotions,” she says. These worries have lessened over the years: “I’ve learned to chill, listen to music, and tune out my anxious thoughts. I picture things I enjoy, like being by the ocean, instead of letting the fear overtake me,” she says. “There’s such a strong mental and emotional piece to recovery.”

Today, Joan feels a sense of victory when looking back at her experience with this disease. “I visualize myself as a healthy, wonderful being with a beautiful, clear brain, living my big life,” she says. “I tell myself, ‘I’m healthy, I’m strong, I’m here.’ I never want to go through anything like that again, but it’s not in my head all the time. I’m focused on today: who I want to be, how I can spend more time with the people who matter most to me, and how I can be of service to others.”

Asked what it’s like to be diagnosed with a rare disease, Joan says, “When I heard I was one in a million, I thought, ‘Of course!’ I can never do anything small,” she laughs.