Amazing adventures of cancer and my brain
My name is Meg and my brain tumor story begins at age 28 on December 7, 2007. I was out to lunch at a nice restaurant with coworkers – our boss was taking a group of us out for the holidays. We had finished eating and were sitting and chatting when I suddenly had a seizure, scoring me an ambulance ride to Northwestern Hospital. I had tests done that led to my diagnosis of a probable Glioblastoma Multiforme (GBM) brain tumor. No previous symptoms, no warning that my life as I knew it was about to change. I was kept in the hospital for the weekend, feeling fine, if a little anxious about what all this meant. I was discharged that Sunday with plans to return for surgery to remove the tumor on Tuesday (though due to insurance issues, it was pushed to Thursday). Surgery went well; I was not in much pain and my surgeon felt that he had gotten as much of the tumor as he could see. I was up and walking laps around the floor the day after and discharged home on the following Sunday.
The next decade was a blur of healing, chemo and radiation, steroids, Keppra (anti-seizure meds), a Gamma Knife radiosurgery, and MRI scans every few months to ensure I was tumor-free. So far, so good! I passed every milestone – 1 year, 3 years, 5 years, and finally 10 years; I was beating this tumor and being an example of long-term GBM survivorship - not just surviving but thriving!
Fast forward to the Summer of 2019, when “something” showed up on my scan. Seriously?!? After almost 12 years, now this?!? Because there are so few long-term GBM survivors (the average survival is 16-18 months post-diagnosis), it was difficult to definitively say what this something might be. Was it scar tissue, treatment effect, a tumor? The only way to find out was to go in and remove it. I had surgery at the end of June and it went well. Yay! Except it was GBM again and in a totally different part of my brain. Now to heal up and start chemo and radiation. I met with the radiation team, got fitted for my mask, and then waited for my incision to heal. And waited. And waited some more. My incision just was not healing!
It was determined that it must be infected, so a new specialty was introduced to my already stacked medical team: Infectious Disease! Another surgery was planned to clean out the infection a few days later. They took out bone in the back of my head, cleaned it out, and reattached it. Infectious Disease ran tests on the infected stuff and I had a PICC line inserted to facilitate at home IV antibiotics, which I would administer myself. And the incision would heal up quickly, right?!?
Well, my head had other plans. What followed was a long summer and fall of antibiotics and quarantining due to lowered white blood cells, but nothing was working to heal my incision. Another surgery was scheduled for August, and a final (if you are keeping track – that is the 4th) surgery at the beginning of October, which removed the infected bone -- and my incision was almost fully healed in just a few weeks! My wait to start chemo and radiation was nearly over; I completed radiation in January 2020, and now I am off all treatment and just getting scans (MRIs) every 2 months. I will continue to stay positive, to be thankful I have a job where I can work from home (and sneak in lunch time naps when fatigue hits), to look forward to more, warmer days and HOPE!