Scans are the worst.

Scans are the worst. This is not surprising. It’s pretty common knowledge to people in the brain tumour world, and I’m sure its pretty familiar in other medical circles as well. There’s even a catchy little term for it: scanxiety. It sounds cute and clever, and it ties a complicated set of emotions and triggers and reactions up in a sweet little bow.

It’s shorthand that those “in-the-know” can drop into conversation and that others “in-the-know” can recognize as a need for a nod and a sigh and hug or a “fuck you universe” as fits the speaker and their relationship.

But it’s not really the scan that’s bad. When done regularly, say every three months, the mechanics of the scan become routine. This comes from the perspective of a caregiver and parent, but I’m sure I can’t be alone in the way I feel about it.

The routine goes like this:

Our daughter’s scans, are booked months in advance and several at once. We seem to get notifications in a bundle of three or four individual letters received in the mail, all within a week or so of each other. Each form letter includes the date, the nature of the scan (an MRI, requiring contrast and full sedation), the time, and the procedure to prepare (aka: starve and clean) the patient. There are instructions to call a week ahead to confirm you’ll be showing up, which we always do, and a prompt not to miss the call or you’ll lose your place and have to rebook, which we never do. We put three dates in our calendars: the date and time of the scan, the date a week before to call and confirm, and the date that marks the Wednesday after the scan, when we’ll make sure both parents are clear to attend our weekly chemo session. This is where the neurooncologist will review the team’s interpretation of the results.

The week before the scan, we call the MRI department or they call us and we review the preparation necessary to put our four-year-old under sedation. I’m sure a lot of grownups would freak the fuck out in an MRI machine too, but for a little one, a knockout is a must if you’re going to get a clear picture. It’s loud and it looks like an alien spaceship in there. The scan takes 45 minutes to an hour or more and you have to hold perfectly still.

Sidenote: We’ve had a few 5-minute “short” MRIs where she hasn’t been sedated; two where she writhed and screamed and kicked in restraints as I held her hands, my own body hanging half out of the machine, and one where she merely whimpered and watched the Minions movie on very 1970s sci-fi looking goggles. None of them felt “short.”

On the day of the scan, we show up in the imaging department and are greeted warmly by the desk clerk. She knows us and knows our daughter’s name without looking at the card I hand her. We have a photocopy of the medical history form most people have to fill out. It’s easier and faster to just white out and change the date, and her height and weight. There’s a lot of history.

When we’re moved through to the prep room, our daughter changes into the hospital-standard flannel pyjama top (puppies or stripes) and settles in with her iPad to wait. Usually, her port (semi-permanent main line access to her blood system) has already been accessed because we’ve arrived early and done her chemo treatment before the scan. The nurse comes in and confirms her history, her allergies, and has us check the labels on all the forms. Our daughter gets her vitals done. “Leg hug please. She doesn’t like her blood pressure taken on her arm.” We catch up with the Child Life specialist, who comments on how our daughter has grown and finds out which sparkly toy she wants to look at while the sleepy medicine gets to work. We see the MRI tech, who explains the procedure for the images to be taken (which we know, but they have to review anyway) and the anesthesiologist, who explains the medical procedure and recovery process (which we also know, but they have to review anyway).

One parent empties their pockets of change and removes any jewelry and the other parent makes small talk with the nurse or the Child Life specialist. There’s the constant “eurm eurm eurm” of the MRI machine in the background through every conversation as the previous patient wraps up their imaging. They’ll be resting and recovering from sedation behind a canvas divider panel as we go in.

The empty pocket parent carries the patient into the alien-looking room where several Avengers have assembled to put our daughter to sleep and run her through the scan. The Child Life specialist swizzles sparkly sticks and our daughter pushes the button on a wand with an LED display that flashes colours and illuminates her face before her eyes roll back and she’s settled onto the bed. Empty pocket parent gives her a kiss and we meet in the antechamber of the spaceship to collect our things.

We hold hands or one of us pats the other on the shoulder as we walk through the hospital for the least romantic lunch date ever in a cafeteria filled with students and hospital staff. I get poutine. My partner gets a burrito. We plan the week and chit chat as we eat, then head upstairs to the Ronald McDonald room for free coffee (the “perks” of being a hospital regular) and some HGTV.

When we return, our daughter will be the one behind the canvas divider and we’ll wait another half hour or so for her to wake up cranky and starving. She’ll be kind of drunk for the next 24 hours. Loopy and unsteady without realizing it.

This is the routine; the easy part. It’s steps to follow, forms to fill out, a procedure to complete. Tick one box, then the next, and you’ll get through it and go home.

The hard part is the wait for the results. It’s a week or two of supressing fearful, invasive thoughts about what the scan might have to say. You’re mostly ok, but the poison bubbles up when you’re tired or when someone cuts you off in the grocery line and suddenly you’re ready to go to fisticuffs.

In the time between the scan and results, you scrutinize every wobble and stumble, every misplaced word, every mood swing and stand off (of which there are many with a four-year-old), looking for signs of what might come from the data collected. Your gut wrenches itself into knots, you don’t sleep so you drink too much coffee, you yell at both kids more than you should and you make mountains of molehills that leave you crying in the pantry. You just have this feeling that things aren’t ok.

And sometimes they are…ok. But sometimes they aren’t, and you’ve been through this so many times in the last year and a half that there is no firm ground to walk on. You know, quite legitimately, that a sinkhole sits below the playground, you just don’t know where. You also, rationally, know that worrying about it changes nothing. It doesn’t prepare you for anything. If the ground is going to fall out from under you, worrying now is not going to give you anything to hold onto. If things are going to be shitty, well, they’re going to be shitty. There’s no glory in this kind of “I told you so.” but you worry anyway, because you cannot help yourself. You have been conditioned by experience to expect the worst.

And it IS the worst, even when it isn’t, because you have to do it again. And again. And again. Every three months. It’s Ground Hog Day without Bill Murray. It’s the Day after Tomorrow without Emily Blunt and Tom Cruise. In those movies, they developed skills, there was a way out. The loop, eventually, was completed. But we don’t get Andy McDowell in the end. We’re not developing killer biceps and learning to exploit the alien’s weakness. We’re learning lots of lessons, oodles of lessons, whole heaps of personal growth, but it doesn’t break the cycle. And for our daughter, the cycle will last her entire life. It may stretch out to every six months, or every year, or maybe every few years, but the tick tock of the scanxiety clock will set the pace of her metronome unless science finds a way to silence it.

We are thankful that the technology exists to monitor her in this way, and that we have access and funding to support it. We hope desperately that the chemicals and procedures used to track and control her tumour’s growth don’t cause her additional harm in the long run. I don’t know how we learn to manage the fear and stress that it causes us and I don’t know how to teach her to manage it as she grows and becomes aware of the constant “eurm eurm eurm” in the background.

On the night before results, after a cry in the pantry, and a half dozen of my son’s Halloween treats, the best I can do is curse. Fuck this. Scans are the worst.

Game Face

In my youth…

Ugh, it pains me to say that: “In my youth…”

While still technically in my late thirties (very late thirties), the last year has aged me physically and emotionally well into late middle age.

When my daughter got sick, I chopped all my hair off into a pretty severe mom pixie. At the time, I was sleeping in vinyl pull-out chairs and washing it in restroom sinks. It’s a little longer these days, but I’ve added two significant grey patches that are now growing into full-on streaks. I’m doing this, in part because I’m lazy, but also because I feel I’ve earned the right to not give a fuck about dying my hair. One advantage of being a full time caregiver is that literally nobody cares what you look like, including, most of the time, me.

I am, however, trying really hard to be healthy…not fit, not sexy, just healthy. I’m terrified of not being well enough or strong enough to care for my daughter or to keep my family running. My partner is busting his ass keeping us afloat financially through all this. My job is to stay standing, and at this age basic maintenance requires a significant effort. I can’t go down…not for a cold, or a sprained ankle (which I generally do a couple times a year), or (God-forbid), anything more serious.

The long and short of it all is that I feel old. Older than I am. Wiser than I was. More cynical than ever, but also, in dark and serious ways, more capable than ever. And this brings me back to what I originally intended to talk about here.

In my youth, I played a lot of sports. I was never particularly good at any of them, but I was, generally speaking, athletic enough to make a team, committed enough to feel I should pull my weight, and cool-headed enough to get the job done in a pinch. I wasn’t particularly competitive (which is good, because I wasn’t particularly gifted) but I was consistent. I was a solid, second (sometimes third) string volleyball player who could reliably serve the ball over the net when the pressure was on, or at least get the ball to the setter so someone else could hammer it. Not a lot of power or glory in that, but I could pull it together if people were counting on me to stay level-headed. In life, I’ve not always been so level-headed. I’ve always had a temper and sometimes my anxiety and imagination get the best of me. But, I think I can say that when it has really mattered, I’ve generally been able to put on my Game Face and get shit done.

The last 10 months have involved a lot of Game Face; ludicrous amounts of it. With all the ups and downs of diagnosis, treatment, surprises and setbacks, I have developed Olympic-level Game Face. This isn’t to say I don’t fall apart. I do. A lot. With swears and tears and gnashing of teeth. But there are points everyday where that reaction simply will…not…do.

With the best of intentions and love, friends and family praise and wonder at “how you do it” or “how you’re holding it together.” But there really isn’t a choice.  (At least no one’s given me a choice. Is there a choice? Somebody better fucking tell me if there’s a choice.)

As parents in our kind of situation can attest, big kid pants are frequently the only option in the closet.

I remember, about a month into all this mess, a late night wander through the hospital halls. There was a hand written sign on the wall that read: “You never know how strong you are, until being strong is your only choice.” The internet tells me this is a Bob Marley quote. It was a literal sign, written by one of the teens in the hospital’s mental health program. (Want to talk about strength? Look there.)

Throughout our extended stay at the hospital, I’d see pencil crayon-coloured signs like this go up and down. One or two of them, including a rainbow “Never give up.” sign, posted by the elevator near the pediatric intensive care unit (PICU), is still roughly taped up nearly a year later.

Sometimes this kind of thing feels like a platitude and other times it feels like a giant pile of relevant shit. At that point, we were the ones on the ward that the nursing staff was, to quote one individual, “praying for.” It’s a secular hospital, so that wasn’t as encouraging as that individual probably meant it to be. It reinforced the feeling that our situation, from the perspective of someone who had seen a lot of bad, was definitely not good. There were a lot of questions. Things were as hard as they could be.

To me, that night, that sign (“You never know how strong you are, until being strong is your only choice.”) felt like at least one other person, beside my partner and I, had been in it, good and deep, and had waded through it simply because it was the thing to do. At least one other person (though I’d go on to meet many, many other families who were in shit situations like ours) had been in a place where Game Face was the only option. We were not warriors, or soldiers, or amazing parents…just people who had to get through because our kids needed us to.

The sign reminded me of the evening my partner called from the hospital to tell me about our daughter’s stroke. The brain surgery had gone as planned. Her brain, however, had reacted poorly to the shuffle. She’d lost all movement on her right side. She wasn’t talking. I’d just arrived home from a sleepless night in the PICU. It was my turn to recover a bit and connect with our six-year-old son. My phone rang and I stepped away from dinner with my in-laws to take the call in my office. My partner was understandably a mess. The medical team had walked in shortly after I left. The doctor hadn’t been particularly delicate about it. We didn’t know why it had happened or if she would recover any speech or functionality. There was nothing to do but wait. It was fucked, but there was nothing to be gained from going back to the hospital to stew and wait. My partner and I needed each other, but our son (at home) needed me too. We were trying to support him as much as we could. He’d already been passed around quite a bit.

I got off the phone, told my in-laws I needed to clean up and didn’t mention the call. My partner would fill them in later. In the shower, I shook. I didn’t cry because I couldn’t. If I’d started there would not have been an end to it. I got dressed, finished dinner, hung out with my son and put him to bed. Four straight hours of the most intense Game Face I’ve ever worn, followed by another two hours of silent ugly crying into a pillow.

A week later I took my son to baseball practice. I gave him a thumbs-up and a smile as he played. I watched the preschoolers playing soccer on the grass two fields over. Three weeks prior, our daughter had been running with that exact group. She’d shouted “Watch me coach!” with a hilarious Boston-y accent every time she kicked the ball. As far as I knew, she wouldn’t do that again. I ground my teeth and compulsively checked messages on my phone to hold it together. Game Face.

Countless times we’ve held our daughter writhing in our arms, doing anything to distract her as she’s poked and prodded, scanned and swabbed, knocked out and injected. Game Face. Game Face. Game Face.

Game Face is a skill. It has been learned terribly and traumatically, but I am proud of it. I am proud of what my partner and I have managed to endure. I wish I could put it on my resume. I also wish we could have learned it, as a couple, without all this.

It does not mean that we are not shaken.

It does not mean that we do not fall apart.

Those things have to happen, because the solid truth of Game Face is that you cannot wear it all the time. It can’t just become your face. Nobody wants that face.

You have to feel and to move through it at some point or the nasty manifests in an outburst, or a breakdown, or a break up, or an illness of your own. Game Face is not sustainable without consequence.

This means we have to tag team.

This means we have to find a balance between Game Face and allowing ourselves to actually feel things. You need a team for this kind of game; one person to hold it together until the other one has unloaded and recovered.

Game Face can be hard to shake and it’s important to notice when your partner is reaching their limit so you can put yours on. How do we do it? We talk a lot. We talk pretty candidly. We also shut the hell up sometimes. That’s important too. Especially when we’re deep into a procedure or when the demands of life outside our family’s medical experience need to be managed.

Strength, as a parent, is not something you just have. It’s not instinctual and it doesn’t come naturally. You learn it in the early days when your infant is screaming and you don’t know why. You learn it when your kid scrapes their knee and you manage to calm them down. You learn it when they go off to daycare or school and you discover that they are actual human beings that make mistakes and cause drama and you need to figure out how to help them navigate it. This year, we have learned strength in dark rooms with beeping monitors. We have learned strength in cold hallways and crowded exam rooms. We have learned strength in hospitals, rehab centres, and at home.

In my youth, I was proud of my Game Face. I still am, though the shift in context from high school volleyball to the extensive world of modern medicine and treatment is more than a little overwhelming. Truth be told, Game Face often teeters on the border of being a pretty unhealthy smoke and mirrors trick. But desperate times call for desperate measures, and I’ll use every tool I’ve got to get by, one week to the next. We haven’t had more than a couple months of calm between any particular upheaval, so for now, I’ll buy into the illusion that we can handle this. My expectation is that in time, it’ll translate into genuine, enduring resilience, because our particular situation isn’t getting any lighter. My hope, is that somehow, someone, somewhere, will give us a way to opt out of the need for Game Face altogether.

 

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