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.

Perks of the Job

There are a lot of shit moments in my new world as a caregiver. My career, as it was, is on hold. There are trying times doing emotional, psychological battle with a three-and-a-half-year-old. There are long, boring waits in medical centres and rehab facilities and drawn out, anxiety-inducing waits for test results at home while we’re trying to just get on with our lives. There is always an undercurrent of fear and frustration and anger at our family’s situation and what we all have to give up and work around in the reality in which we now, and forever, find ourselves.

But, and it’s a big but (cue the immature giggles at me saying “big butt”…I spend a lot of time with kids), there is also a new pace of life and a flavour of love that we would not have if our world had not been completely shaken up this time last year.

I’m going to be self-centred and zoom into my caregiver role in particular here. If this role had not been forced on me, I would be spending this afternoon fretting over a deadline, bitching about the client that was pushing for twice what they paid for, and then frantically packing my laptop into my bag, forgetting the critical power cord in the office as I crammed myself into my car to fight highway traffic to collect the kids from daycare and school. We’d jam food in their faces before rushing them to extra-curriculars, snipping at everyone along the way, sandwiching homework and home reading in just before bed to do it all again the next day.

While that is all relatively normal, and it’s not bad, it’s also a life that feels less relevant than it used to. Because someone needs to be here, and available, managing appointments, and therapy and chemo, someone is. That someone is me and after a year, that old life feels pretty distant. I’m home and the days have to be flexible with wiggle room and room to rest, so the rat race pace is less intense. Mornings and afterschool routines are more relaxed. We schedule less and roll with it more.

My work as a caregiver, and it is work, expands to fill all the time I can give it, but there are also moments and tasks that just have to be quiet and filled with something else. I may be on call all night, but I have an hour here and there, when my daughter is with a grandparent, or watching a movie waiting for chemo, when I can just sit and read. My day-to-day life is not spent at the computer, or on conference calls, so I enjoy sitting and writing and I relish actually talking to people again.

I’m always stressed and anxious, but I also have a therapist prescribing gym time and painting to preserve my mental health. Self care is no longer a luxury, but a requirement. If my body fails, I can’t do my job, so I’ve made getting in shape a priority for the first time in my life and am sticking to it. I can’t wrap my head around an actual piece of art, but I’m picking away at painting an old doll house because I need something, anything, to do that is not involved with my daughter’s care and medical needs or family administration.

I am not going to deny that our situation, while challenging, is a hell of a lot easier in all this than it could be. Another day, I’ll dig myself into the layers of privilege we have in dealing with this whole mess that make it possible for me to not work at anything but the care of my daughter right now. (Short version: Holy shit, we are lucky we live where we do and were born into a place of comfort and education.)

I’ve spent more time with my daughter in the last year than I spent with her in her first two years of life. My relationship with my partner and my son are deeper and more grounded than I ever thought possible, because we’ve had to build different connections and ways of communicating. We spend our weekends and time together so much differently than we did before because that’s the way it has to be. We don’t try to pack too much into that time. Our situation has slowed us down, and there are definite benefits to that.

As a caregiver, as any caregiver can attest, your time is not really your own. You’re never really off duty. You never really relax. You are the day shift, the night shift and the emergency room shift. You are the repository for all the important information and the shield that the shit hits on its way to the fan. I don’t drink any more because I don’t want to be half in the bag in the ER trying to coax my daughter through a CAT scan. My partner is absolutely willing and capable of doing this, but it’s my job and I’m stubborn and I’ve got the front-line experience. I don’t want to drop the ball.

This is not a “poor me” situation (though of course I wouldn’t choose it). What I am trying to accept and fight for (with myself), now that we are out of crisis mode (hopefully for a while, ideally forever), is to still be myself in amongst all the other things. I’m trying to maintain the parts of me that I like and that I have control over.

I don’t know if my career will ever be what it was. It certainly won’t be what it could have been. My family life, another aspect of myself, will never be what a lot of other people have or what we thought it would be. I can’t control what has driven those changes.

What I can control, and am learning to relish, is the time and space between the caregiver tasks. I don’t feel so guilty about time to read, or to doodle, or to write escapist garbage, or to savour a coffee and the odd cigarette on a sunny day. I’m learning, slowly, to not ask for or apologise for that time. I’m trying to just take it. There aren’t a lot of perks to this job and unpaid interns bring home more bacon. Might as well make the most of it.

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