Okay, really the title of this post should be “Birthdays, Clean Scans, and The Illusion of Control,” but I had to give a shout out (and maybe an apology?) to the band, Thrice and their breakout album. That’s just how we roll here at amhoov.org (in case you haven’t read my early posts tracking the songs that played during my radiation visits).
A couple of days ago, was my birthday. Forty-second trip around the sun, and I don’t feel a day over 57. Birthdays are now officially weird. Big R thinks I’m crazy (spoiler alert – she’s right) because I’m not sure which date is more important to celebrate now – my own damned birthday or my cancerversary. For the moment, I’m picking my birthday because sorting out the true cancerversary is just too tricky. Is it the date I had my seizure that started everything? Is it the date of my craniotomy? I had to wait a few weeks to get the tumor genetics and the official GBM diagnosis – is it that day? For now, I’ll stick with the good, old-fashioned birthday.
Post-diagnosis milestones are also just just generally fraught these days. There’s simply nothing else to remind you how short your life may be like celebrating a milestone. How many are left? This could be the last one. Better make it good.
Another one of those weird milestones is the MRI. We are now four scans in, and every single one of them has come back completely clean. That’s good, right? Of course it is! Buuuut there is this weird need I have to feel like I’m struggling against something. I need to see progress. To know that my actions are positively impacting my treatment and my health overall. I feel like the absence of recurrence or progression is just going to make a recurrence hit that much harder if/when it comes. I realize my position is totally counter-intuitive and maybe a little unhinged, but it is what is ¯\_(ツ)_/¯.
The Illusion of Safety (Control)
The main thing I’m working to wrap my mind around these days is the idea of “loss.” It doesn’t matter what direction you come at it from, this crappy disease (and its treatment) forces you to accept loss. Everywhere. Cognitive abilities? Check. Comfort? Uh-huh. Physical capacity for work? Roger that. Emotional stability? Oh, hell yeah. Some friendships and social/professional relationships? Wish it weren’t so, but yeah, those too.
Probably the biggest loss, though, is the illusion of control, and maybe that’s not actually such a bad thing. I recently had the experience of completing my annual report at work as part of our review process. The report asked me to reflect on the past year (where did I succeed? fail? what did I learn?) and consider the future (new research plans, classes, areas of growth). Oh. Fun! I wrote a page-long preamble detailing how and why it’s difficult for me to do either of those two things because I live each day with such profound uncertainty about the future.
But, here’s the thing. So do you (I’m talking exclusively to you cancer muggles right now). You just don’t know it (yet). You could be hit by a bus later this afternoon. The only difference between you and me is that I have a slightly better estimate of the probability of being hit by that bus. A lot can change in a lifetime (and the blink of an eye), but, clearly, one thing is more certain than most. I probably will die from my cancer, not with it.
Once again, this is one of those “What punishments of God are not gifts?” moments. You and I both know the bus is coming. Does the fact that I’ve caught an actual glimpse of it change anything? No not really, but also, yes – everything.
Somehow, I have to learn to hold both of those realities at the same time. It’s a gift to have seen the bus up close and also to only have been grazed by it so far. French writer Guy De Maupassant once wrote:
One sometimes weeps over one’s illusions with as much bitterness as over a death.
Amen, Guy. Been there. Done that. It’s time to stop weeping and step out into the crosswalk once more.