by Ashley Morris-Johnson
One of my sons gets his hair from me. It’s long, golden, and beautiful. These days, instead of rockin’ long locks, I have a different look. I shave my head, so I can I wear a portable device that looks like a cap to help with my glioblastoma multiforme (GBM), which is an aggressive type of brain cancer, which I refer to as a bully.
I have been standing up to this bully for about 3 years. I was originally diagnosed with GBM several months after sustaining a concussion from a car accident. I was receiving therapy at a concussion clinic when an MRI detected something greater than a concussion. It was GBM. When I received the diagnosis, I cried silent tears. I didn’t cry because I’m afraid to die. I cried because I’m not ready to die, and my original prognosis gave me about 18 months to live. I’m not ready to leave my (grown) children. Thankfully, I’ve pushed past that mark and continue to exceed expectation.
This aggressive type of cancer can occur in the brain or spinal cord. It can be very difficult to treat and there is no cure. For me, I received surgery, am currently undergoing chemotherapy and tumor treating fields (TTFields) therapy, which uses an electrical field to disrupt the tumor cells' ability to multiply. TTFields involves applying adhesive pads to your scalp. The pads are connected to a portable device that generates the electrical field. Some people choose to wear a wig over the device pads on their head, but I choose to rock the look, sans wig. I’ve come to love my device and even named it “Hope.”
My treatment plan has allowed me to continue to enjoy life. I am grateful for the days I get to cheer on the Alabama Crimson Tide and Dallas Cowboys. Each day I spend with my four children is a blessing. I cherish each Rotary Club meeting I attend. I am still very active in my church, and I fill my life with good things and positivity.
This uninvited journey I’m on certainly does come with challenges, but I choose to go with my life’s pivot and embrace the adventure. For example, I can’t drive anymore. At first, I saw this as a sign of losing my independence. But now, I plan out each excursion with more thought and purpose. Each day is a gift, and each step is something I don’t take for granted.
I don’t know what tomorrow will bring, but I know that I’m not done fighting off this bully. And as one of my health care providers said, “we’re not out of bullets.”
If you or someone you love ever find yourself fighting GBM, my main piece of advice would be to surround yourself with a health care professional team that you can understand and trust. I am fortunate to have exceptional health care providers in my corner, and there is no else I’d want by my side as I face the bully that is GBM. My medical team, my faith in God, and my family are what lift me up every day.