Written by Lisa Joerling – Brains for the Cure Ambassador and Ganglioglioma Survivor
Whether you have been just diagnosed, are currently going through treatment, living through watch and wait, or years past treatment, the relationship with your care team is a crucial part of your health and brain tumor journey. In the 7 years since my diagnosis and surgery to remove a ganglioglioma the most important thing I have learned is how to advocate for myself.
2 years after I had surgery, I moved to Kansas City from Chicago, 500 miles from my doctors including the surgeon who saved my life. I set up a care plan with doctors in Kansas City while still being followed in Chicago. The logistics of seeing two doctors got tricky at times, but I always feel better with more eyes on my scans. I have since created a “brain binder” as I call it. It has my 20+ MRI CDs, my MRI reports, pathology reports and more. Having this information with me makes life easier for my entire care team as I have gotten second and even third opinions while I manage seizures and 6 month scans as we watch a new spot.
My advice to others on this journey would be to find doctors that you can communicate with, trust, and make you feel like a partner in your health decisions. I go up to Chicago or tele-health with my surgeon every 6 months. Even years after my surgery he still asks about my family and asks about me as a person, so I feel more than just another brain scan. I got lucky when he was the neurosurgeon on call that day in the emergency room.
Another crucial part of your care team is your support system. I see my doctors every 6 months, but my friends and family are with me daily going through this journey. My parents have been nothing but amazing helping take care of me post surgery and never missing an appointment after my MRIs. My friends and family have given me more love and encouragement than I could ask for.
You know your body and brain best. Choose a care team that you feel comfortable with and trust and take one step at a time.