In August of 2006, I was 35, had a career in advertising and a picture-perfect family.
In September of 2006, I was diagnosed with terminal Brain Cancer. My son was five years old, and my daughter was only 18 months old. As you may have heard in the news, Sen. John McCain was also recently diagnosed with the same disease.
Over the next 90 days, I had emergency brain surgery, my husband at the time left me and took his health insurance, and my father was killed in a terrible car accident after dropping me and my kids off at home.
Sometimes that’s how life works. Tragedy can happen out of the blue. You have to make quick decisions—and then life can stop in its tracks.
After brain surgery, I woke up paralyzed, strapped to a bed, having seizures, in immense pain and scared to death!
I knew how to throw a dinner party, how to manage a successful business and how to change a diaper. But after I got sick, I realized that I didn’t know how to find a doctor. Most people don’t think about it until it’s an emergency.
It took months of research, phone calls, and trips to Boston, New York and Chicago before I finally found the right doctors at Yale Brain Tumor Center, 30 minutes away from where I live.
Back then I assumed a brain surgeon was a brain surgeon.
I had no idea there were brain surgeons… and then there were BRAIN SURGEONS! And no idea there were Oncologists … and NEUORONCOLOGISTS! I sure as heck didn’t know the difference until 10 years later.
After co-founding the Connecticut Brain Tumor Alliance and going public with my story on The CBS Evening News, I was nominated to sit on the Medical Oncology Board of the ABIM as a Patient Advocate. (For everyone, like me, not in the healthcare industry, it stands for American Board of Internal Medicine.)
At my first Board meeting, I was scared to death, completely intimidated by all the “smart” people in the room. After all the doctors went around the table and introduced themselves, it was my turn.
“Hi! My name is Tracey Gamer Fanning… and I’m not a doctor. I’m a brain cancer patient!” And that’s how I became an advocate and voice for patients.
I represent cancer patients at ABIM and lend my voice to the work it does to ensure doctors are staying on top of the latest updates in their specialty. Going to a physician who knows the right medicines and latest treatments is one of the most important decisions a patient can make. This is especially meaningful when you are fighting for your life and want to know that your doctor is offering the best options possible to keep you or a loved one alive.
You see, I have this crazy idea that we have the right to expect great healthcare. The process doctors complete to become board certified and maintain certification provides patients the comfort of knowing our oncologists aren’t practicing 1984 medicine in 2017.
I feel like I speak a completely different language at times to let the ABIM doctors I work with know what it’s like to see the world though a cancer patient’s eyes—eyes that understand surgery, rehab, seizures, endless medications, radiation, chemotherapy… and making end-of-life decisions.
When I sit at the table, I am honest and talk to them about what I really think is important to cancer patients across the country. Mine is a valid voice to have at that table.
We are at a point in our country when healthcare care is changing so rapidly, and there’s so much at stake, I plan to speak speaking boldly and loudly about why holding physicians to high standards and expecting them to have current medical knowledge are so important!
At the end of the day, patients will make their own decisions about what doctor to see. As part of the selection process, I encourage EVERYONE to take a moment and check their doctors’ certification status and credentials online. Or, just ask him or her at your next visit.
It’s important information you want to know before facing an operating table or a scary diagnosis. Trust me, I know!