Tag Archives: presence

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.

Adaptation

I’m three-quarters through chemotherapy… hopefully. Nine cycles down, three to go. Then an MRI will dictate if I can go for liver surgery or if I need to pursue another course of treatment. My cancer responds to the chemo very well, so the surgery seems likely, and I am thankful. This is the persistent crush of uncertainty. It’s not something particularly new for me to manage, but it is still tricky.

Each round of chemotherapy seems to bring different issues. I don’t know why. Currently, tiny islands are forming on my hands as gravel-sized pieces of skin peel away. It’s beautiful in a strange way (and, thankfully, not uncomfortable), but also most definitely gross. Fatigue fluctuates. Nausea comes and goes. A dry mouth seems likely. A random bloody nose. Intense tingling reactions to the cold seem constant. At least half of my days see me feeling in relatively good shape, though, and I can freely sing and dance and pursue projects. Yay!

I’ve been keenly navigating these ups and downs. The invisible virus plaguing us for two years adds to the uncertainty. Even the weather—perhaps giving me the chance to spend time outdoors—is uncertain. I’m strengthening my skills to accept what I can’t control, adapt for what I can control, and fertilize the stories I want for the future. It’s been like this for years and requires an adaptive and aware way of seeing.

Adaptation and awareness are skills like any other; they require building and work. I’ve known intimately how fragile life is and how quickly things can change. This awareness I’ve carried with me for some twenty years has given me a specific approach to time management; An approach especially helpful as I’ve been navigating this journey. It’s an appreciation of the moment and gratitude for what I have. A short-term outlook to what’s within my reach—a seize the day kind of way filled with joyful hope and dreaming and doing. And a long view of how intricately interwoven our lives are with this planet and all people. A vast expanse of possibility that my precious life feeds and manipulates even at this tiny, human-sized scale.

I have had to adapt so much these last few months. I sense that our society will have to become accustomed to adjusting in the years ahead. If I could offer advice from my experiences, I’d say it starts small (“small is all,” as adrienne maree brown would say). It begins with gratitude for even the tiniest things: laughter, kind words, a ride to the hospital. Enjoying the small actions I can do: volunteering, helping a friend. A both-eyes-open awareness and consciousness help offer a perspective of what is beyond my circle of control and what is in it. It makes me aware of the vast unknown that is constantly expanding, and approach it with curiosity. It helps make informed decisions, even difficult ones. I allow myself to grieve my losses even if the loss is temporary. I adapt: my workouts move into my living room, volunteering moves online, I make movie nights in the den a festive event, I video-call my husband nightly, and we share a secret virtual hug ritual. I don’t put an end to hope. I keep moving and nurturing the stories I want to see unfold and the communities making them happen. I bathe in the abundance of life around me. For if one cannot find the joy of life in the most difficult moments, what kind of joy is to be found when things get better?

I’d like to acknowledge here the work of adrienne maree brown, who’s informed my thinking about intentional adaptation, resilience, and so much more. Her book Emergent Strategy outlines much of this in the context of strategic social change, and is a delight to read with a dedicated group of friends.