Dark Days

Content warning: still about terminal cancer.

The dark is getting to me this year—persistent, cold, bitter. But, I’ll be damned if I let it stop me. One thing I know about the dark, is it must be faced. Not feared. Not ignored. Not fought. Not run from. And, for goodness sake, not given into.

That’s my weakness—giving in. I’m captivated by the dark. The stars, that milky stroke across the sky, the fleeting shadows, and the mystery draw me in. I could easily fall into the dark and let it consume me. Indeed, for much of the last four years I’ve had to hide in the dark to protect my skin, sanity, and immune system—staying away from sun and people.

Rod and I went to Dinosaur Provincial Park in September.

A month ago, I sat in my doctor’s office and tears trickled down my cheeks, my breath caught in my throat, and sobs rang from my chest. I held my heart like a hug—a way to comfort myself. My onocologist handed me the tissue box. I’d just been told that the treatment I’m on usually extends survival by about 10 months. It’s a hard thing to hear. I’d just turned 39 and the laughter of my best friend’s first child still rang in my ears from the day before. There’s always light in the darkness, those stars that make the shadows flicker.

It’s not easy getting bad news as the nights grow longer and days become colder. There’s fewer activities to distract me and I’m forced to stay still, to nest… and ruminate. Furthermore, my new treatment makes me quite fatigued, which suits the 16 hour-long nights, but not keeping busy. Still, I get up the next day and make a grocery list because, goodness, I’ve dealt with everything else ad nauseam.

But this is what I’m talking about. I can give in too easy. I can plan so much for darkness that may never come (some darkness always does though). But my weakness is also my strength, because I can also plan for miserable things that need to be planned for. Not that I think death is miserable or dark, per se. But, to be honest, I still like life quite a lot and want to get the full experience—the good and bad, the sublime and imperfect, the light and dark—before I become dust and soil. And, so, I am looking at options. I may be going to the States next year for treatment, if I qualify. There’s a clinical trial coming to Calgary that may be a strong option for me.

And so, I dwell in the darkness of the season, for a bit. I go for walks when the low-hanging sun hits my face. I let stars guide me to new horizons and opportunities, being ready for what may come.

The New Year and Now

December had been coming to a close with a glow of optimism. In the final weeks of 2024, I had a CT and MRI scan. I expected good results, given that September’s tests showed an excellent response to the new drugs I was on. My continued skin problems should have been a sign that the drugs were working on my tumours as much as they were irritating my skin. As you might detect in my wording here, the scans were not great, but not terrible. Heck, maybe they’re better than I’m giving them credit for. The lesions in my liver remain the same size as they were in September, which means I probably won’t qualify for surgery and that I may need to move onto another treatment path (or not) yet again. This isn’t uncommon, but it still sucks. In particular, the ongoing uncertainty sucks.

With this news, the new year didn’t have the “turning a new page” glow that I often experience around this time.

After ringing in two new years while on chemo and having been in treatment for so long, the fascination with it all–which gave some excitement to the otherwise horrendous experience–has largely faded into the dull hum of life. (This is part of the reason I don’t post as much anymore). I’ve gotten so much bloodwork and so many scans that they all feel mundane. One pathetic highlight of the last year was finding free parking near the hospital, which also provides a rather scenic and peaceful walk before appointments.

It feels like I’ll be on this journey forever, and I don’t know what that means or looks like.

Although uncertainty about the future is a fact of all our lives, going into 2024 feels like a particularly unwelcome point of uncertainty for me. I still look forward to the fruition of some projects, but I worry about my ability to be fully present. I expect myself to be the person I was before diagnosis, which just isn’t the case anymore. I have chosen projects that give me the flexibility and accommodations I need. Still, I remember when prioritizing flexible work hours and modes of work was less important. Navigating my abilities and limitations makes everything more complicated.

I try to find grounding, joy, and hope, but sometimes the ominous grey clouds do not clear as readily.

I am frustrated by the slow pace at which I operate. For one, treatments put me out for a few days, followed by a few more slow days as I recover my energy. I have so many healthcare appointments to manage. My mental ability is hit or miss; I find myself forgetting a lot more and finding it hard to focus for extended periods of time. I lose words. I become overwhelmed with how best to take care of myself. I worry about people noticing my difficulty forming and expressing coherent thoughts.

I’m practicing several ways to cope, and I am grateful for a younger version of myself who developed many healthy strategies.

Photo by Kym MacKinnon on Unsplash

Of all the healthy routines I’ve practiced, I’ve always struggled with enjoying the present moment. A moment can be a fraction of a second or extend over millennia. The past and future press into even the most minuscule moment, shaping it. I can’t divorce the history of my body and surroundings from the millisecond I reside in, the present. Likewise, although in a more obscured way, I am aware of the buzzing of the future that my body enters and builds from this moment. For these reasons, I struggle to find presence.

Is the present a tiny speck in the universe of time? By the time I register what my senses perceive, the present is past, and I am catapulted against the portal to the future.

I am working on being present. That’s the most sure thing I can lay down for 2024. I don’t know where my health journey will take me, but the projects I’m working on are full of possibilities, and I look forward to them taking their shape. For me, I’ll be sitting in the present each day and trying to sense its fullness. Maybe this year, I’ll find it.