Once the air hits your brain, it's never the same. The tumor itself, the tool used to cut into my skull and remove my glioblastoma, the chemo, and radiation all played their roles in changing my life. Median life expectancy was 16 months, he said. I don't think so, he said, when I responded saying I had kind of planned on making it into my eighties. I didn't cry until on the 90 minute ride home when we went by the kids' high school where my youngest was still a sophomore.
My surgery, chemo and radiation were "standard of care", and went smoothly. I participated in a clinical trial that was a 2nd surgery to insert catheters into the cavity site in preparation for 96 hours of chemo infusion. Patient tolerability was one of the determining factors and I was walking the halls after a couple of days, rolling my pump and medicine with me.
It failed FDA approval based on its' failure to "significantly exceed the results of the chemo wafer, it's predecessor". The sponsor, Neopharm, went bankrupt.
When I left the hospital, a nurse informed me, "you know you're never going to work again.". When I asked what I was supposed to do, she said I'd collect disability. I questioned my eligibility, still being able to walk and talk almost as if nothing had happened. She said I'd be a slam dunk and she was right. They also said I'd probably want to begin taking anti-depressants. At the time I denied the need, and figured I have a clear picture of things and don't feel particularly depressed, having survived surgery and come out of it feeling almost normal.
Over time I assessed the new me. I had a new headache that became a permanent fixture. I had a strange numbness in my feet, mostly in my toes, that I said felt like excessive toejam. They said that was chemo caused neuropathic damage. Depression and fatigue became an issue and I tried pills for help. They were ultimately worse and I'm now down to only an anti-seizure medication and a prostate aid from the pharmacy.
Otherwise, I'm doing well. I volunteer announce high school football, basketball, playoff volleball and even one wrestling match. I'm in excellent physical condition, walking 18 holes of golf most weekdays for at least the last five years. With my last MRI clean again, the doctor added that my brain tissue looks very healthy, like it could be a 4 year old's. I thank cannabis.