When you have a GBM 4 – even if the doctors are confident it was likely all removed – you’re told it’s not a matter of IF it comes back, but when. In order to survive, you have to be constantly vigilant. You must continue treatment, the standard of which means that you spend 5 days on chemo, 23 days off every month and get an MRI every 8 weeks (they get more or less frequent depending on your situation). If you’re in a clinical trial, you go for extra scans, blood tests, whatever it takes. You must be willing to forge your way through the side effects each month. You must push the anxiety leading up to an MRI aside, so that you get out of bed in the morning and appreciate the day. You work very hard not to let cancer be all you are in the world.
Your future is uncertain, so you plan that future in 8 week increments and you live your life as best you can between brain scans. You know you’ll feel like hell by day 4 of that 5 days of chemo and that hellish feeling continues into day 8, so you plan your projects, shopping, socializing, and activities for your kids between day 8 of one round and day 4 of the next.
THESE are the days between. These are the days when those of us with brain cancer try to be wives, mothers, friends, humans and push the cancer off center stage. We try to live every day to its fullest, enjoying as much as we can, while we can. And we also try to live the more mundane every day, keeping our kids’ lives as ‘normal’ as we can. Our mortality and the reality of our cancer is always looming over us – will I have 1 year? 2 years? 5? or will I be a legendary survivor? We hope for legendary.
I have brain cancer and I will continue to fight like hell. Some days the cancer demands my attention, but in the days between, I can be a mom and a wife and a woman first.