Scanxiety

“You don’t have to make it look like you’ve got it all together, you know. You can be angry, or upset, or whatever. No one would blame you. Jesus, no one expects you to be happy for Christ’s sake.”

But…I am happy.

Mostly.

I had the privilege of joining a friend for his birthday recently. He was someone I came to know during my time at Ronald McDonald House. Well, actually, it was my daughter and mother’s time at RMH – I was living in the hospital with Violet. It was during our first month or so of treatment, when Violet was in critical care and I was hunkered down in our room, unable to visit Lucy much or stretch Violet’s umbilical cord more than a mile.

But this friend was there with his 2-year-old daughter and his wife, who was pregnant and struggling with severe health issues of her own. In the Ronald McDonald House, there are different approaches to “life” within those walls. Everyone in there is experiencing trauma of one kind or another, and because of this, are emotionally raw and vulnerable, and either wide open or closed shut.

I have to admit, I kept my head down a lot. I tried to close the doors to emotional connections. Because, at the best of times, I have a hard time handling my feelings. They are BIG without any excuse. But at the RMH, they were incandescent, on the verge of detonation, all the time. At RMH, I didn’t want to connect with anyone for fear that they might be the spark that ignited a bomb. I wanted to avoid an unimaginable mess, if at all possible.

But my mom and Lucy, being the socialites that they are, did all of the emotional connecting for me, and out of that came a friendship I am now eternally grateful for. Because friends made under those circumstances are a special breed. You share a certain understanding about things that connects you in a way nothing else can.

“You know we read your blogs. And sometimes I wonder – is that really how she feels? Like how people put on a front, so to speak, because they want other people to feel that things are alright. But they’re not alright. It’s been a really hard time.”

“I know,” I said to him as he sipped his wine under a tree in the ambient autumn light. “But actually, it is how I’ve felt. Not always. But when I wrote those things, I felt it. You know, positive. Happy.”

But maybe, because I had an audience, I deliberately chose that angle. I generally express myself with authenticity. I can’t help it. But maybe the motivation to see things throughout this journey in a positive light is, at least in part, because there have been so many waiting to hear my words for confirmation that everything was going to be alright. And the only way I could give them that is if I believed it.

So here we are. I just got our confirmation email for our upcoming visit to the oncology ward. Everything is booked. Starting October 14, Violet begins her week-long onslaught of scans. PET/CT and audiology test on Friday. Bone marrow biopsy, Echocardiogram & Electrocardiogram for her heart on Monday. GFR (glomerular filtration rate) test for her kidneys on Wednesday. And her MIBG (metaiodobenzylguanidine) test on Thursday – the big one that will show specifically if there are neuroblastoma cells or tumors in her body to address.

So how do I write about this one? After 18 months of treatment, I know I have an audience awaiting these results. If you’ve been reading…listening to… our story this far, this matters. It really, really matters.

You don’t have to make it look like you have it all together.

We’ve been home – like really home – for months now. Violet finished her last month of treatment here, meaning we haven’t been back to BC Children’s for almost six weeks. Violet returned to school, joined Girl Guides, and even went for a two-night sleepover tent camp in the bush without her mother. She’s slept in the trailer, floated in the lake, took a boat ride, and rode a horse. She has milked this summer for every inch of joy she could manage.

We’ve almost forgotten all about that sterile world inside those walls.

But of course, there’s the line in her chest that needs to be flushed each day. There have been medications to take. There have been dressings to change. And there have been upcoming scans to discuss.

And there are friends that we’ve made during our journey that are still in the thick of the battle. Despite keeping my head down, my heart is spread out all over the place and deeply embedded in the stories and challenges of all of those precious kids and their families.

We are still in between worlds, although it’s been easier to lean into the one outside of the hospital lately rather than within. On the other hand, my total faith that we have beaten this and that everything from now on is a technicality gets challenged sometimes, and when it does, it is like a backdraft, suddenly sucking all the oxygen from the room and exploding into a concentrated fire of fear.

What if I’m wrong? What if we have to start all over again? What if I’ve been full of shit this whole time, and one ugly mark on a scan will tear down these walls and leave me an exposed, aching agony of despair?

But here’s the thing. Life can be made up of what-ifs if you let it. There is always the option to fall apart. In this scenario, no one would blame me if I went down that road.

No one would fault me if I let these scans scare the shit right out of me. And even if they did, I wouldn’t. There is data – all kinds of it – and evidence all around us to back up any possible paranoia I might have about this disease returning and taking us right back to square one.

But what if she is winning? What if my heart knew all along? What if the power of positivity and community and love did conquer all this time? What if there is a happy ending?

Here’s the truth about me – I believe in happy endings. In fact, I think that’s all there is if you give things enough time. I think it’s all about patience. It’s all timing. It’s all about waiting for the punch line, so to speak.

That goes for everything, in my opinion. Even the most awful, unimaginable, ugly shit turns into something meaningful – something beautiful – if you give it enough time to settle and integrate and find its place. We can lose jobs, lose homes, lose people we love. But if we aren’t in a rush, those things find their place, too. Things work out. They do. They just always do, somehow.

That’s my story and I’m sticking to it. Unless that bomb explodes and I’m left with mud all over my face. Or tears. Or whatever happens when people fall apart (tears is a good start). But that will be ok, too. If it happens. And for now, I’ll stick to keeping the faith. Even if it’s slightly hued with its fair share of doubt and anxiety.

…stay tuned…