cancer journey – Page 2

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.

Rays

The grief that’s been holding me for five months begins to crack. I see more light pushing through where the substance gives way. Grieving takes time. A shrouding. A breaking. A healing. New growth finds purchase within me, reaching into the illuminated places. Learning how to laugh and dance and sing and read again, with joy now. Growing into these lightened spaces where cancer doesn’t hang like a black cloud.

I still think about cancer a lot. There’s always an appointment on the horizon and side effects from treatment reminding me of my condition. It’s a long, persistent presence. There’s the uncertainty of what the coming months will bring. I wonder if it will always be this way—if the grieving will someday fade to an hour a day or a week. I wonder how joy will show up tomorrow or in a month. Settling into uncertainty is challenging but something many of us are learning. Treasuring the present. Dreaming a tomorrow. Taking small steps.

It’s been said many times, but the holidays are challenging for people moving through grief. There are many ways it manifests. For me, the absence of the usual joy that giving brings me and the burden it places on my scattered chemo-brain has been a struggle. Missing holiday gatherings that are too risky for my immune system sucks (not that these are happening with Covid, to be honest). I desperately want to spend time in the warm lakes of companionship. All of this is on top of navigating ever-colder weather that I’m painfully sensitive to because of chemo.

While laughter touches more of my days, I broke down last week. Thursday evening was set aside for card writing and present wrapping. My heart was heavy, and the usual joy these activities bring was nowhere to be found. I couldn’t concentrate, and even the simple task of signing my name felt overwhelming. I hadn’t planned carefully, and I sensed cards were in short supply. It was too much. I found myself shaking and crying. Thank goodness for my excellent partner. Even though it was late, he and I decided to go to the mall before it closed and see Christmas lights. The first display we saw was the twinkling moose standing at least twelve feet high. We marvelled and enjoyed it. After leaving the mall, we drove through the community, catching glimpses of decorated houses and inflatable figurines propped up on lawns and balconies. It was an act so small, but it broke me out of the doldrums this time. I’ve since been to two more malls for holiday decor admiration. It’s silly, but it’s helping. I’m surprised at what aids me to move forward. I hold a compassionate space for myself to explore these salves.

Today, I’m doing good. Despite the lengthening nights of winter, the light is coming through the cracks. I am connecting with friends, dancing, and singing most days. I’m finding more balance. Not every day is this way, but I’ll take it when it comes and enjoy the rays as they come through.

Lighting up the room with a twinkling tree!

Exploration

I was in a very different place three months ago. The shifts and changes over this time surprise me. Some expectations unmet, and some exceeded. I find myself in new territory and navigating with determination on my way.

Over the last few months, I have met more and more cancer survivors—seeing the incredible variety of forms this generic term “cancer” contains. The treatments are just as vast and remarkably progressing in their effectiveness. Although we forge different courses on the proverbial map, I see how mine is shaped by those who’ve travelled before me. I think of the leaders of cancer organizations, often cancer survivors themselves, and of donors and researchers who contribute to the journey. Much support and research flourishes, and I’m thankful my path benefits from this growth of understanding.

The tumours in my colon and liver have come exceptionally down in size since starting chemotherapy three months ago. The path set by my medical team has indeed been a good one. Granted, it leaves me fatigued, sensitive to cold, and nauseous. Still, I have visions of a future where there’ll be treatments less brutal as well as more early detection in young people like myself. This journey is tiring indeed. I will continue to chart forward, continuing chemo for a bit longer, and then a high chance of surgery in a couple months.

I have a fantastic support community and a lovely psychologist with cancer expertise. The effects on my mental health are some of the most difficult to navigate. Not having the straightforward tasks of a job make some days feel bleak, but small projects are helping uplift me in that regard. I find myself dreaming more, laughing more, and reminding myself of the value of doing small acts.

That said, the shortening days and colder air have brought on a particular sorrow. The grey of the sky drones with the grey of grief in my spirit. I try to light my candle for brightness, but its light is small and untrained for this ordeal. Although there is much to hope for in my progress so far, cancer is a nebulous threat that looms with fierce uncertainty. I return to the present moment often—the flickering candle and my steady breath—but cancer sits ominously near… and within. It feels heavy, but I am getting to know it better. I imagine my community in my body, clearing the misguided cells and setting them down a river. Healing. This is the best way I’ve found to approach my cancer. I’ve found little gratitude or warmth for it. Do I need to? Who knows what the future will bring.

When I look back at the beginning of this trek, I remember the pervading feeling of guilt. So. Much. Guilt. It manifested in my angry reaction to questions about causes. I’d felt this was my doing and felt the reason was my mistake. That’s the story I’d heard in my life. To avoid cancer, you must exercise, eat greens, avoid red meat, limit alcohol, cut sugar, live in alignment, live in balance, and so forth. And even though I did my best (most of the time), here I am. I wish I’d been more firm with doctors when my concerns were being written off… but perhaps I was scared myself. I find forgiveness. I release the guilt. Some days it is more challenging than others, but when I look back at the path I travelled, I see the burial mounds where guilt was shed. I’m doing better now. I hope others know they can ask for more from doctors, and I hope others know that life plays out as chaotically as the stars overhead and cancer follows these same rules. Whether you did everything right or everything wrong, there is always a chance that the path ahead will be more treacherous than anticipated. We will never dominate the natural world. So, I’m learning how to live with it beyond the longing to control what scares me.

My gratitude for a life well-lived has come to my aid many times. Over the worst parts, I lean on the strengths I’ve gained to ease the turmoil and remind myself how to move forward. Gratitude is definitely one of my strengths, and thank goodness. I know the coming months and years will continue to put me to the test. I learn, and I grow as I go. And keep living well.

Shifts

A new phase of healing. I’m feeling quite good (after the chemo side effects wear off)—a win I’ll accept. I’ve been able to enjoy some movies in theatres and a wider breadth of tasty foods. I’m finding more energy here and there throughout the days. These are good signs and contribute to a mood of heightened spirits, which I need. I find myself surprised that the drugs could possibly be working when they feel so brutal. I guess that’s the point.

While the cancer moves out of my body, the shift from autumn into winter signals change as well. The excitement of diagnosis has wound down, and I’m turning inward more. I’m valuing time to myself. The last couple of months have been somewhat of a marathon, and it feels like I can breathe a bit more this week. I’m enjoying the space and quiet while I can, although it’s not all easy.

I’m bemoaning the shorter days and colder air. It’s the signal for hibernation, but it brings its own anxiety. Am I ready for the coming months? What is even coming? More rest? More treatment? More fatigue and nausea or some other adventure? I’m a leaf on the wind, not knowing where I’m headed. I’ll get answers soon, but it’s a bit unsettling.

The hardest thing I’ve been confronting these last few weeks is my ablism. I’ve thought of myself as so accepting of everyone and an advocate for accessibility. But until being faced with my own inabilities, I’ve failed to see how much prejudice I hold. I’m seeing how I’ve valued work and productivity so much. I’m hard on myself when I’m not pursuing a challenge. I’ve harboured these thoughts of others too, and now I’m learning it’s necessary to let go. It’s not easy. I’m learning to accept all life in the way I accept the bugs, soil, and streams for just being alive and beautiful. I realize that engaging in joy does not need to be a reward for hard work. I’ve had to confront the scorn I’ve cast on myself and others for not constantly pursuing difficult or challenging things, and it is a tough cookie to chew. I realize the irony that this tough cookie is yet another challenge. It is what it is: necessary. But, I’m trying to be kind with how I learn this lesson.

So here I go into the calm: more healing, more joy, more life.