I went through MRI #18 on Monday. It was a regularly scheduled follow-up on my brain tumor. I have MRIs about every four months until further notice. To overly simplify possible outcomes of my MRIs, things can basically go one of two ways: “continue waiting and watching” or “commence panicking.” I already have the results of scan #18, and they are “continue waiting and watching.”
Which, in the world of brain tumors, is something to celebrate because it beats the alternative.
Being that the MRI took place in the time of masks and coronavirus, it was a little weird for me. And by weird I mean it was weirder than usual.
I knew going in that I’d be doing the whole thing alone. Usually Dan, my emotional support human, accompanies me on these things and hangs with me in the waiting room until they call my name. But with the precarious state of things and his being on immune-suppressing drugs for Psoriatic Arthritis, there was no question—he would drop me off and never go inside the hospital.
For psychological reasons, it’s hard for me going into hospitals alone. But it’s also physically challenging for me, scooting through the halls that all look the same with my rollator and my vertigo in tow. Because, even though I do this sort of thing regularly, getting where I need to go is different every time. If some new hospital construction project doesn’t force a detour, then visitor tracking during a pandemic does.
So before my noon drop-off, I read the arrival instructions on my appointment reminder at least a dozen times, trying to memorize my route: Outpatient entrance, turn left, cloud elevators, LL, head north toward the hospital.
I’m not directionally challenged, but if you turn me around inside an unfamiliar building, drop me in a hallway without windows, and swap right/left directions for compass directions, I’m going to struggle. Hell, I would struggle even sans brain cancer and post-traumatic stress. That’s why I was like 95% certain I was going to get lost if I just walked in the hospital winging it. I’d practically convinced myself that if I didn’t memorize the arrival instructions, I’d be trapped in the hospital basement for hours, possibly days.
Ah, memorization. I used to be really good at it. I think it’s why I always did so well on exams in school. But brains are fickle, it turns out. They don’t perform as well after they’ve been poked with a scalpel, irradiated for five and a half weeks, and repeatedly, methodically exposed to life-saving toxins.
As the doctor at my neuro-psych evaluation last year told me, though, I don’t have a memory problem per se, I have a problem with recall. By which she meant that the information I want is in my brain, but I struggle to access it in a timely fashion.
I still just tell people my memory sucks though. Because, practically speaking, what’s the difference?
There are tricks I use to cope, though they’re far from foolproof. One of them is to create lists. Another is to just repeat shit until my neurons make so many visits to a particular information storage area that they create a new noodle groove.
DISCLAIMER: This is not a scientifically accurate description of any neurological process.
What was I even writing about? Oh! So Dan dropped me off in the circle drive and I tried to scoot my way through the automatic doors of the outpatient entrance to Carle Hospital. They didn’t open. There was an easel-like sign on the ground about three feet in front of the doors telling me to use the main entrance, but I trucked right by it for three reasons: 1.) when I look down my nystagmus kicks into overdrive and the whole world spins in front of me, 2.) my brain was preoccupied with remembering to make a left once inside, and 3.) the other of my only two functional processing slots was busy trying to keep me from kissing concrete.
So I searched the glass for a sign taped to the door. I’m sure with an expression of complete bewilderment. I found one to the left, just above a little black rectangle with a red light on it. “Employees must use keycard to enter.”
I was in the middle of muttering “but what does that mean for patients?” when the automatic doors slid open and a security guard in an N95 told me I had to go to the main entrance. Everyone was to be screened before entering.
So much for those stupid directions and the mental pathway I’d spent 20 minutes creating.
I would like to note that I am not complaining about the hospital’s COVID-19 protocol. I am thankful for it. What I am complaining about is how deeply I grieve what I’ve lost, how I miss the ability to pivot when thwarted by uncontrollable circumstances and then carry on without missing a beat. After a pause to process what I’d been told, I thanked the masked man and shuffled to the main entrance.
I did make my way to the radiology check-in without much problem. The signs on hallway walls that were either non-existent or covered by plastic sheeting during remodeling in January were back and at eye-level, meaning I could read them with minimal dizziness.
I was the only person in the waiting room to get my IV for the contrast dye, and the creepy quietness of the hospital was unsettling.
Inside the imaging room, I climbed aboard the skinny table, stuffed a couple of plugs in my earholes (these aren’t the fancy MRIs like at Siteman Cancer Center with the posh headphones and your choice of internet radio station) and did my best corpse pose while a stabilizing headpiece pinned me in place and the magnets did their buzzing and screeching at 110 decibels.
I was going to write about this excursion days ago. I was also going to make rice pudding and post another YouTube video and, you know, just generally do things. But it’s taken me this long to recover from the exhaustion of MRI day. I’ll get back to creating things again when the fog lifts. Until then, remember:
May is Brain Tumor Awareness Month, and you can make a donation to the National Brain Tumor Society to help fund research for a cure.