personal journey – Kat Dornian

Five Years, Five Lessons, and Cake

A generous slice of chocolate cake with strawberry icing.

Today I’m celebrating five years since I received the official phone call telling me that I had cancer.

“Five year survival” is one of many statistical measures that cancer researchers and healthcare teams use to gauge the effectiveness of treatments and interventions, as well as to provide prognoses to people who have cancer. Five years is kind of an arbitrary amount (kind of not). Obviously, our number systems are base-10, half of ten is five, so it’s a common number to use. Personally, I find the number five fascinating for how much it recurs in nature, in both simple examples (five fingers, five toes) and more complex patterns (a pentagon’s ratios are golden ratios are the Fibonacci sequence). So, for any or all of these reasons, it feels like a big deal that I’ve survived cancer for five years, an outcome that had about a 13-18% probability.

If you’d like to celebrate with me, please donate to one of the organizations that have had a significant impact on me through my cancer journey:

Young Adult Cancer Canada focuses on supporting young adults living with and beyond cancer through retreats, conferences, support groups, and much more. I’ve found such a strong and supportive community in YACC that has truly helped me thrive through my cancer journey.
Wellspring Alberta helps people affected by cancer at any age with a variety of supportive programs including arts, exercise, health, finances, social activities, and more. I’ve been benefitting from Wellspring’s free programs since my diagnosis and always learned so much.
Tip of the Toes (Sur la Pointe Des Pieds) takes young people living with cancer on therapeutic wilderness expeditions to regain self-esteem, build hope, and find connection. I believe so strongly on the power of nature in the healing process, and am so thankful for the incredible work this small foundation does.
And if you can’t donate at this time, reach out to a friend you haven’t heard from in a while, say hi, and tell them why they’re special to you.

Now onto some juicy stuff. There’s a lot of change and growth that happens in five years. Even though much of what I’ve learned has to do with a disease I would have never chosen, I am grateful for the lessons I’ve learned because of it. So, here are five things that were actually big learnings for me in the last five years:

Everybody is different and everybody’s cancer is different.

I am pretty amazed how incredibly diverse cancer is. Before my diagnosis, I hadn’t thought too much about cancer. I thought cancer was the same thing just in different parts of the body. But there are so many different kinds of cancers, complex reasons for cancer, and even a single kind of cancer can have many mutations. The way different bodies respond to the same treatment is also varied.

Scientists and researchers around the world are learning how to target all the different kinds of mutations. It’s exciting to see so many discoveries that lead to better individualized approaches to treatment decisions. When I was diagnosed, my tissue samples were biopsied and tested for mutations that would inform the kinds of treatments chosen for me. But, it’s more than even that. Understanding that everyone is different has reinforced how important it is to listen and understand before “fixing.”

Just like getting to know an individual’s cancer before prescribing treatment, I want healthcare teams and supports to know the person too: What do they live for? What are their goals? What are the no-go’s? For me, I don’t mind tolerating certain side effects so I can continue to live, experience Earth’s joyful wonders, and do my little part in making the world a better place for as long as I can. But what if the side effects took away my ability to do what I love? Everyone must make that judgement call for themselves, and I hope each individual is supported in making the choices that are right for them.

Advocacy is so much more than what I expected.

Advocacy should be easy and accessible for everybody. Anyone should be able to get answers about their own health, have respectful discussions about treatment decisions in order to make choices that align with their values, and have concerns not only believed, but addressed without a fight. If that all happened, perhaps self-advocacy would not be as foreboding and difficult as it is. In general, I have a lot going for me that helps me advocate for myself and be heard. And yet, my concerns still get dismissed, treatment discussions have to be rehashed, and frankly, my own strength to advocate falters as I try to keep up with a brain that works at half-speed.

Even with skills such as good communication, organization, and curiosity, I can’t deny that my lack of medical knowledge feels like a huge hinderance in advocating for myself. I had a steep learning curve in how to read imaging reports, understand bloodwork, read medical research papers, and look for clinical trials. I don’t have the experience of someone who sees people with cancer everyday and that is an enormous gap. Luckily, support groups help to share information and topics that help with self-advocacy, and I’m thankful I have access to many such groups.

But even with all this, I get tired and I get frustrated, and the work I do never feels like enough. And I say this realizing, gratefully, that I have a privileged set of acquired skill, personal characteristics, innate privileges, and unfettered access to pay-walled research (and technology) that improve my ability to advocate more effectively. The fact still remains, I’ve needed help from loved ones coming to appointments with me, from doctors not rushing me, from other patients sharing their own research and experiences with me, and from countless people coming before me to make changes in the system—and I believe those supports are a vital part of effective advocacy as well.

When I first heard “advocacy,” I thought it was simply stating my needs and standing up for those needs. It is. But access to information, support to interpret that information, and support with skills outside of my wheelhouse are also necessary. Furthermore, self-advocacy is far easier when you have a healthcare team willing to listen. Like so much in life, effective advocacy is carried out by community.

Self-compassion isn’t letting oneself go.

A couple years ago, my psychologist encouraged me to explore self-compassion. Up to that point, I thought self-compassion was saying things to myself like, “oh, it’s okay that you didn’t do that thing that’s important to you today, you can try again tomorrow.” It didn’t really work for me. After taking a self-compassion course, reading Self-Compassion by Dr. Kristen Neff, and working through a lot of exercises and practices, I realized that self-compassion is so much more than accepting imperfection. I realized self-compassion is also finding ways to make things better in a kind and supportive way.

For instance, one day I went to the pharmacy—my final errand on a full, hot morning. I was irritable as I waited in the ever-lengthening line, I tapped my foot aggressively and glared at the confused customers ahead of me who were asking too many questions. Later that day, I felt ashamed at my unkind behaviour. I could have just said to myself, “it’s okay, just behave better next time.” But that’s not really self-compassion. I had to recognize how stressed going to the pharmacy makes me, and provide myself the comfort I needed in that moment. I also made a supportive plan for myself to use inn future. Next time, I would go to the pharmacy first or not run so many errands in a day, and if I did notice myself feeling irritable, I would put my hand on my shoulder to ground myself. And then, I supported myself in making those changes because they help me be the person I want to be.

The other amazing thing about self-compassion is the ripple effect. What struck me most about self-compassion, is that self-compassion is strengthened by understanding interconnectedness. Additionally, compassion for others is improved when being more self-compassionate. In her book, Dr. Kristen Neff says, “as we recognize that we are interconnected rather than distinct entities, understanding and forgiveness can be extended to oneself and others with fewer barriers in between.” To be compassionate to myself at the pharmacy helps me to understand why others may be irritable at the pharmacy. And much like self-compassion, it doesn’t mean letting people off the hook for poor behaviour, but to approach people in a supportive and understanding manner.

Since practicing self-compassion more, I have become more aware of what draws my attention, what I notice, and what I talk about most. Not surprisingly, it is the very things that frustrate me most coming from others that also frustrate me most about myself. Recognizing this doesn’t always make it easy to challenge those beliefs, but practicing compassion for myself first helps me to practice compassion for others and not get so annoyed by other’s behaviours, like impatience or laziness (qualities I find I am particularly hard on myself for).

What the health and wellness industry sells me is fixing my failures and the illusion of control.

When things don’t make sense and seem too big, what do I reach for? Health and wellness books, exercise routines, diets, sleep programs, meditation plans. Why? Because wellness feels like something I can control in a body and a world that is spiraling.

It is vital to understand personal levers of control in order to act effectively. Yes, an individual’s food choices do affect personal energy levels, mood, and long-term health. And in a broader sense, an individual engagement in civic issues is a level of control that can affect democratic change in a society. And don’t get me wrong, putting effort into taking care of my health and wellbeing has been a net positive in my life. But I struggle to make sense of that. Getting cancer seems a clear sign that despite all my efforts, I am failing at controlling my body. And many health and wellness influencers prey on this sense of failure and vulnerability so they can make money from it.

I’ve known this about the wellness industry for a long time and I’ve had to put in continual effort to filter the messages coming from a $1.5 trillion global industry. Now, with social media, the messages seem relentless, more brutal, and are personalized to prey on my shame and vulnerabilities. This isn’t healthy, and thankfully, I think a lot of people know this trap and don’t fall for it, but it still scares me. I’m still learning and practicing to be compassionate to myself.

“Many people are scared to acknowledge their essential interconnectedness because it means they must admit they don’t have complete control over how they think and act. This makes them feel powerless. However, the illusion of being in control is just that: an illusion and a harmful one at that because it causes self-judgement and self-blame.”
~ Dr. Kristen Neff

Dying well means living passionately.

Despite living at least two-thirds of my life as though I could die at any time, I hadn’t really considered how I would live if I died slowly. I live mindfully, gratefully, and passionately—not leaving for tomorrow what I can do today. Sure, I make choices and prioritize, because I haven’t figured out time dilation, but I live well. Then I got my cancer diagnosis, and I thought I’d just take time off and heal and then pick up where I left off. This sort of “living without doing” drains me.

Doing activities and working on projects brings meaning to my life; they are essential to my wellbeing. I no longer question why people with cancer or terminal illnesses continue to make art, read books, start projects, garden, support their loved ones, travel, or do whatever helps them live the life they love until they die. In fact, I hope everyone has the chance to die in the midst of doing something they love, because a passionate, unfinished life has to be better than dying without loose ends but never knowing what you lived for. I’m confident now that I can die peacefully with unfinished projects scattered about. I hope I do. I know those projects, passions, and purposes look remarkably different for everyone, but I hope everyone finds some of theirs sooner rather than later.

I struggle to believe that each of us has one unique purpose, and I think sometimes people get wrapped up in and frustrated by finding a single sole/soul “purpose,” but we do each bring something valuable and unique to those around us. In art classes, nobody makes the same piece of art. Nobody. All our bodies and all our lives are different, making our brush strokes and colour choices unique. I bring my unique composition and experiences to all I do, and I think that’s something worth sharing. And even if the smile I share with a passerby isn’t that unique, isn’t one more lovingly shared smile in the world worth living, and dying, for?

“But I do live. The bee flies. There must be some way to integrate death into living, neither ignoring it nor giving in to it.”
~ Audre Lorde, The Cancer Journals

Each lesson above, in some way, goes back to one core idea: the individual is an essential and inseparable part of the larger whole. Just as all the cells and organs in my body—complete with their individual skills and functions—are an essential part of my self, so too are those cells and my body a part of my larger social self and the earth. The edge of my skin is not a distinct barrier separating me from my surroundings and from others. It is more like an ecotone—a place where ecosystems overlap and intermingle.

Everyone brings their own individual composition, passion, and skill to the world. Together we advocate and take care of each other. This disconnection from other bodies and from our own bodies is an illusion that holds us back from caring for ourselves and others. I hope the lessons I am sharing in this post show, in some way, that individual responsibilities and outcomes are entwined with those of all beings around us.

In the end, I want to choose compassion. Compassion for myself, compassion for others, and I want to allow others to have compassion for me. I feel that’s one way to have some control, to shine with love in this bleak, spiraling time. I hope I do my best to honour that compassion by listening, being supportive, and exercising what skills I have. I know you, dear reader, have done that for me.

Now that you’re done reading, don’t forget to celebrate with me by donating to one of these amazing organizations: Young Adult Cancer Canada, Wellspring Alberta, and Tip of the Toes (Sur la Pointe Des Pieds).

References:

Lorde, A. (2020). The cancer journals. Penguin.

Neff, K. (2011). Self-compassion: The proven power of being kind to yourself. Hachette UK.

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.

Still Here

It’s hard to believe I have cancer. Four years ago I had a port implanted in my chest and started chemotherapy. Four years later, I’m still here. I’m still on chemotherapy. It still feels surreal. Nonetheless, I am here.

I joked with my dermatologist that I’ve had cancer for as long as it takes to do an undergraduate degree. Although many of the feelings of grief, disbelief, wonder, and passion for living echo what I felt four years ago, there is also the journey I have been on and growth I have had in this time. Surprisingly, the hardest lessons have not been the innumerable drug names or what these drugs are doing or what all the different proteins and enzymes in my bloodwork are showing. The hardest lessons are what I’ve learned about cancer and the profound impacts of ableism on us—all of us. To this latter point, I’ll say that I still struggle with the ableist notions from which my understanding of the world grew, but I’m improving.

I’ve touched on my ableist belief system and my relationship with wellness culture before in my writing. Ableism is so ubiquitous and entrenched in society that it is a hard to shake. However, I’m becoming more adept at spotting ableist ideas and phrases now. This practice of spotting has allowed me to deepen my imagining of a world that’s possible if we treated disability differently.

I have much work to do toward this imagining. First, I must stop blaming myself for cancer. At least weekly, I see a post on social media or read an article or overhear a conversation where the individual with cancer is blamed for their cancer or rewarded for their remission: “if only they had been more healthy…”, “if only they had eaten better…”, “if only they had decided to do a complete 180 on their life to fight cancer…”. I understand how blame—or, to say it more gently, a cause and effect story—can give a sense of control and safety. And while I often think of myself as someone who is able to dwell in uncertainty, it is a draining practice. And so, I resort to ableism and the blaming of my imperfect body and my imperfect will: for skipping a workout, or eating a slice of cake, or staying out late for a few more songs to dance to.

I imagine, in a less ableist world, we see more grey areas—the magic in the liminal spaces—and are able to dwell in that uncertainty. We are not afraid of the vast differences in bodies and minds, allowing us to be gentler with “imperfections.” Perhaps we don’t use the words ‘perfection’ or ‘imperfection’ anymore. Perhaps, as our need for control gently dissolves, we see our connections to one another rather than the us-versus-them that’s awakened by fear and blame. Perhaps we feel our shared responsibility to care for our collective wellbeing. Cancer is not caused or reversed or worsened by the sole actions of an individual—it takes a community. It really does. And I am so thankful for mine.

For those who have stuck with me, thank you. Enough philosophizing; here’s an update of happenings since my last post to this site: I completed my creative writing certificate from the University of Calgary and am continuing to create and submit words. I pursued a liver transplant, but have decided that it is not right for me at this time. This is a tough decision to make; liver transplants do offer some patients many years of survival. However, recurrence rates are high (in my opinion), the surgery is risky, and I’d have more chronic health issues to manage for the rest of my life. I continued the chemotherapy treatment that caused skin irritation until June, at which point my health team and I decided it best to look at other treatments. Now, I am back on the chemotherapy regimen I had four years ago, with the hopes that it will be as effective as it was then and that the associated neuropathy holds off for a while. I also went to Iceland with my friend in March, which was an extraordinary adventure to an absolutely unique place. While travel was stressful for me, I somehow managed not to get sick and enjoy much of Icelandic culture and scenery.

I’m looking forward to the rest of 2025 and to being able to enjoy the outdoors a bit more now that my skin is not as sensitive to the sun. I’ll continue to write and learn (for another four years, at least, hopefully). And I’m continuing to look for emerging cancer treatments that might work for me; there are some promising therapies on the way to Canada, so stay tuned.

It’s hard to believe this is my life. It’s hard to accept my illness. But I’m getting better at that too!

References

Lorde, Audre. The cancer journals. Penguin, 2020.

Good Work

[All the ancient wisdom] tells us that work is necessary to us, as much a part of our condition as mortality; that good work is our salvation and our joy; that shoddy or dishonest or self-serving work is our curse and our doom.

― Wendell Berry, The Unsettling of America

By many accounts, I’ve had a productive year. I don’t know how to feel about this. Since my cancer diagnosis, I sought to find value in myself without the badge of outward accomplishments. At one point, my therapist told me, “You are a human being first, not a human doing.” Yet, I am writing a year-end wrap-up highlighting the launch of three projects in which I played significant roles. Not to mention, I had my first piece of creative writing published in Wishbone Words, Issue 14.

Spiritual thinkers like Wendell Berry and Thich Nhat Hanh offer wisdom to this question I pose to myself about productivity. Both saw value in good work. That’s the work I hope I did this year: Work that was honest, compassionate, and helped my community.

It feels strange to be busy while going to chemo every two weeks and managing the strain of type 1 diabetes while my endocrine system acts up—perhaps from steroids, perhaps from the strains of chemo. It is not easy, and it means having to be very intentional about my work. Like many disabled people, I find myself on the fringes of work—needing work that allows me the time I need for self-care and prioritizing my needs.

Unfortunately, I decided to depart from my pre-cancer career. I couldn’t do it when extreme medical side effects made it difficult to show up in an office and commit to five hours of solid work. I loved the routine and the connections with people that I gained by returning to work, and the project I was working on was interesting. However, I also realized how my priorities have changed in the past three years of treatment. Nonetheless, it was an honour to contribute to Quantum Sandbox 2.0.

From home, I helped with two community projects this year: The ElevateUP Career Mentorship Program with The Dollar Detectives and Imagine—Reshaping Adolescent and Young Adult Cancer Care Through Immersive Experience with Anew Research Collaborative. These projects were filled with incredible learning about community engagement and leadership. I feel honoured to have seen these projects flourish alongside the dozens of co-creators and collaborators.

In this community spirit, I recognize how different each of us is. How meaningful, honest, and compassionate work looks different for everyone. I saw how our ability to work—or not—does not diminish our basic humanity and right to live a joyful life, and how society’s view of productivity is not a measure of our worth. I am thankful to my friends who show up in many ways: compassionately, joyfully, and in service to their families and communities. It is so beautiful to watch the diversity of ways we do the good, necessary work—even and especially when it doesn’t fit society’s definition.

Thank you, my friends, new and old!

Do not live with a vocation that is harmful to humans and nature. Do not invest in companies that deprive others of their chance to live. Select a vocation that helps realize your ideal of compassion.

― Thich Nhat Hanh, The Fourteen Precepts of Engaged Buddhism

Quotes:

Berry, Wendell. The unsettling of America: Culture & agriculture. Catapult, 2015.

Hanh, Thich Nhat. “The Fourteen Precepts of Engaged Buddhism.” Social Policy 33, no. 1 (2002).

Gratitude

Another milestone approaches, one I’d never thought I’d reach: my fiftieth round of chemo. Honestly, I thought I’d have left cancer well behind me by this point. There’s a small chance I have; there’s many chances I haven’t. I’m choosing a practical optimism at every opportunity I get, but to be honest, it’s difficult to deal with the uncertainty of what this actually means.

The remaining three tumors in my liver (each the size of dice) appear to be largely calcified—like little skeletons buried in the vibrant ecosystem of my liver. I’m so grateful and awed by the ways the body strives to live. And, I’m grateful for medicine, and the ongoing development of new and better tests and therapies. The thought of going off of the treatment that has kept me alive for the last thirty-two months is frightening, while also relieving (two seemingly competing truths existing together). But even to be here is amazing. Even just fifteen years ago, I wouldn’t have had access to the same drugs I have today.

This got me thinking. I looked up causes of death through history. The first thing I saw was that only a century ago almost fifty percent of people died before they were adults. Nowadays, that number is below one percent. Frankly, I’d be dead if I was born a century earlier. I had pneumonia when I was around eight years old. It would have killed me a hundred years ago, and it could have killed me had I not been born in a wealthy country even now. Type 1 diabetes was a miserable death sentence a century ago. It’s frankly amazing that discoveries and innovations, combined with a handful of other close calls, have given me as much life as I have. And this is probably true for nearly half of the people reading this, half of your friends, half of your coworkers, half of the brilliant people making these discoveries.

I have a lot of gratitude these days. It keeps me uplifted and hopeful. It helps me see all beings as caring and giving of their best. It helps me see and feel my place in the web of being. Basically, it helps me just to see so much. I think about being a kid, and writing thank you cards to family members after Christmas gifts were exchanged. It was a simple practice of gratitude that informed my inclination to the practice later in life. And am I ever thankful for that too.

I remember (perhaps inaccurately, but to the best of my knowledge) being part of the health and safety committee at work, and as part of a mental health strategy, we implemented a thank you board in the office. It was largely a success, but concerns were raised that we shouldn’t be thanking people just for doing their jobs. I get where people are coming from with this argument, but I put forth that thanking someone is a rather simple action in comparison to the meaningful effect it can have. And who knows, some people struggle to get out of bed in the morning, how does some recognition change their morning? Others may feel like an imposter, or face any other struggles that plague us in the workplace, how does some appreciation change their work? I think about how differently I show up to conversations when someone simply shows appreciation for the effort I have put into a piece of work, even if my efforts turn out to be misinformed or otherwise shit.

In this spirit of appreciation, I’ll stop with the sappy, self-helpy vibes and say that the best thing these days is my hair. Although there is chemo-induced thinning, there is also chemo-induced curls. After getting over the initial confusion of coping with this newfound mess, I found a style that I adore. I honestly think that this is the first time in my life that I’m genuinely pleased with how my hair looks. It’s a funny fluff on the top of my head, which is perfect for my face shape, looks the perfect amount of androgynous, actually requires very minimal styling, and the curl shampoo and conditioner moisturizes my scalp so no more dry skin flakes! It’s a bit weird to be overjoyed with a hairstyle that was caused by cancer treatment, but there you have it. Thanks chemo!

I’ll leave it there for now. I’ve been changing and learning (and being grateful for my consistently curious self) these last thirty-two months. Perhaps I’ll say more next time. Be well and be grateful!

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.

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.

Identity

I don’t want to talk about cancer all the time, yet it pervades so much of what I share here. I expect the new year to bring a shift into more expansive writing. Here’s why:

At this time last year, I was settling into the cycles of chemo. The grief of diagnosis gave way to an urge to reconnect with myself and my community. Although treatment and my body’s healing still demanded much of my time throughout the year, I gradually sunk into connecting with my passions and giving what I had to offer. Over time, I spent more energy being me than worrying about cancer.

“No Self stands alone. Behind it stretches an immense chain of physical and—as a special class within the whole—mental events, to which it belongs as a reacting member and which it carries on.”
Erwin Schrödinger, My View of the World

I have found throughout the last year that cancer has undeniably shaped me and yet not become the sole definition of who I am, as I once feared it would. I don’t push away or deny cancer as part of my identity. I like to think I’ve been learning how to let cancer identity take the space it needs, no more and no less. In doing so, I’ve also found the parts of me that shine—an outdoor enthusiast, an active person, an art lover, an educator, and a designer. Oddly, as I’ve seen these parts, I’ve been drawn to the simple question of “who am I,” exactly? Like the Earth shifting from season to season, the “I” is so constantly in motion with the world around it that the question is not so simple.

As I tried to answer this question and connect with the threads woven throughout my life, I observed how the cancer thread integrates with them. I wish these threads wove into a tight braid because that would be an easy and narratively clean answer to that “who am I” question. In reality, these threads loosen into a fabric lovingly woven with odds, ends, and beginnings—an “I” entwined with a messy whole. First, I find I cannot be defined by cancer alone, nor by any single part. So, while cancer happened to me and the self which sits here today has undoubtedly been shaped by the experience, I am still me. Second, there is no single identity in cancer. For each person, cancer’s impact takes a different shape. I notice that while I have the same experiences as others in the community, there is much I don’t relate to also. I am still that piece of fabric so different than the others and still sharing threads. Instead of denying this new part of my identity, I allowed it in, which has led to healing and for myself to come forth. In this healing, I have affirmed that I love being outdoors, moving, preparing food to share, learning, and helping others to learn by designing experiences. These activities have happily appeared throughout my life and have made me feel settled in who I am.

“There is no single entity whose identity is changeless. All things are constantly changing. Nothing endures forever or contains a changeless element called a ‘self.'”
Thich Nhat Hanh, Thundering Silence: Sutra on Knowing the Better Way to Catch a Snake

As I’ve dove more into systems practice, the most astounding realization of the year has surfaced. Since I was a teenager, a piece of advice has clung to me: If you want to change the world, you must first change yourself. Before 2022, I interpreted this to mean that one needed to be perfect before entering into service work for others. If you know me, you know I didn’t take this entirely literally, but it still nagged at me and led me toward constant self-improvement. It’s only been over the last few seasons that I’ve understood how simply changing oneself changes the larger whole one is part of. As the fabric of the self changes, it pulls on the threads of the entire universe. Likewise, as the cancer experience integrates, it shifts the other parts of me and all to which I am connected.

So, I see how I have been shaped by every experience that has brought my consciousness here, and no one else shares that. This experience—reaching back to eternity—makes a self so incredibly unique and at once impossible without the whole. As I shift like the seasons, I change my future and all I am connected to. It sounds grandiose, but with the perspective of my size in the immensity of time and space, it also seems remarkably insignificant.

All this reflection and what I want to say is I’ll write more over the coming year as I continue to explore. I’m unsure if I’ll share it on this blog, but if I do and you follow me, you will likely find more stories and thoughts without cancer as a feature.

For now, know that I am recovering well from surgery (a colon and liver resection). My bowels have pulled through for me and are 95% up to pre-surgery function—amazing. I have a big scar running through my abdomen, and I am excited for summer weather to show it off. I’ll hopefully have another surgery in the next few months for the rest of my liver. If all goes well, I’ll be able to ease back into doing those things I love more full-time and reliably.

A dark collage of space elements and shapes. A small ethereal figure with short ruddy hair is reaching out to a bright sun-like object. — Artist Unknown

Crisis and Action

Puberty hit me differently than most. I spent the prime summers of my teenage years in the woods. The days were filled with forest games, forging trails, and mud baths. The nights were spent around campfires or sprawled on smooth rocks next to the gentle woosh of the river. I fell in love with nature during these summers. It wasn’t the Taylors or Alexes that I wanted; I longed to connect with the Engelmann spruces and Douglas firs.

Ironically, my love of nature did not drive me toward a career in ecology. Quite the opposite; In the months beyond summer, I would create computer games, design websites, and fiddle with breadboards in my spare time. And that was the passion I followed as I matured.

Nonetheless, I could not sever my bond with Earth. I didn’t have words for it at the time, but I understand this love as biophilia now. The term put forth by Edward O. Wilson is defined as the human’s affinity for other life and the natural world.

When I received my diagnosis, my first instinct was to bathe in wild lakes and forests. I felt the powerful force of life surge through me, the force written into the DNA of every organism that lived to bring me here today. Starting with the single-cell lifeforms that divided billions and billions of years ago to these beautifully complex ecosystems that continue to find creative ways to sustain and persevere another tomorrow. Throughout my treatment, I’ve prioritized time with these incredible systems. I’ve rekindled my love with the natural world into a bright and steady glow.

Alas, with love comes pain. I once heard it said that to give oneself to love is to accept the eventual pain when the day comes for one to leave and one to be left behind—what some take as a worthy price for the most euphoric of human emotions. And so, extraordinary measures are taken to extend and protect life, the seemingly most innate instinct in our being.

In the month I got my diagnosis, the Intergovernmental Panel on Climate Change (IPCC) began issuing its sixth assessment on the science around climate change, its impact on our world, and what we can do about it. Here I was in August 2021: dealing with my own personal health crisis as news poured in about the escalating health crisis of this planet I deeply love.

Since then, I’ve undergone the medical treatments to shrink and eradicate my tumours (I’m still going). Like many interventions, the medicines come with a price: loss of sensation in fingers and toes, fatigue, and lowered immunity. So too, may we need to accept some losses in mitigating the most severe consequences of climate change, or else there may be much more to lose. But technical solutions are not the sole course of action available, so I’ve learned.

There are so much more than technical interventions in healing. I’ve seen presence, engagement, community, meaning-making, and hope work as some of those interventions. They’ve helped me through this time and could serve in confronting even global crises.

“So let’s resolve ourselves to live meaningfully, honestly acknowledging the truth that life is fragile, time is fleeting, and death is certain—and rather than ignore, avoid, or deny these realities, may we engage this time with greater clarity for our values, a deeper sense of gratitude and appreciation for what we do have, in richer authenticity to ourselves and others, so that we might invest in those relationships we deeply cherish and seek to make the world a better place.”
Daryl R. Van Tongeren

Presence and Engagement

“We must reinvent a future free of blinders so that we can choose from real options.”
David Suzuki

There is no use turning away from reality and pushing away discomfort. It seems fine at first, but it is much more painful in the long term. It’s said avoidance “dilutes our lives by robbing us of the urgency of a finite existence.” (Daryl R. Von Tongeren, Ph.D). Furthermore, Buddhist teacher Frank Ostaseski teaches that “Suffering is exacerbated by avoidance. … Our attempts at self-protection cause us to live in a small, dark, cramped corner of our lives.”

Presence is the practice of being in the moment and appreciating the little things. This practice fills life with meaning, purpose, and wholeness. That meaning is so vital in the difficult times. As psychologists Joshua Hicks and Frank Martela have proposed, “We should slow down, let life surprise us and embrace the significance in the everyday.”

From my own experience of practicing mindfulness, I can attest to and offer a different advantage. As I look back over my life, it is filled with these savoured moments and feelings: warm winds on my face during morning rides, rich risotto in a dim and lively restaurant, raucous laughter around a board game table. These gentle memories remind me of the meaning of my life while also giving me comfort that I’ve lived life well.

Engagement starts with presence. It is standing with our problems and reactions. It’s what allows us to choose meaningfulness day by day. Researchers have seen that this focus can allow negative emotions to coexist with action, instead of letting the emotions paralyze us. To do this, psychologist Susan David offers a reminder that “Emotions are data, they are not directives.” And feelings can be explored by investigating the function they might serve, allowing the emotion to be worked with and through. So too, looking deeper into problems we face, even globally, can give more hope and meaning to our lives.

While presence and engagement are excellent first steps, there’s deeper work needed for our planetary healing.

Community

“There’s never a clear point at which a being begins or ends, and that’s why we are all lichens: a being made up of multiple separate symbiotic organisms.”
Donna Haraway

There is a robust community among cancer patients if one should choose to pursue it. I’ve found great solace and connection with these friends. I’ve also been blessed to be in caring communities in my life beyond cancer. The power of community is incredible when others are there to lift and support the glow of each other. It breaks the walls of loneliness, makes connections, and moves us forward together. There’s hope, support, and meaning in the community… if done well.

Paul Born, founder of the Tamarack Institute, offers that we cannot settle for shallow communities or fear-based communities. These are rooted in turning away or against others. We must strive for deep community. Community, where stories unite us, time together is enjoyed, care is taken, and a better world emerges from our work. It is not passive work; it requires diligence and care, but the rewards are vast: connection, joy, and emergent good.

A “raft” of ants can cross a body of water that would be an insurmountable obstacle for one individual. Credit: Tim J. Patterson via Wikimedia CC BY-SA-3.0

S arah Jaquette Ra y, whose interdisciplinary pursuits have made her an expert on coping with climate anxiety, speaks to the importance of community in movements. In a recent LA Times article, she recommends, “We need to start where we are, use the talents we already have, and plug into groups and communities that are already doing the work. Building community around action should be our measure of success, and it can happen right now.”

Building a community cannot wait until the crisis is at the doorstep. Anyone can start today by working with organizations moving action forward and even by just reaching out to our neighbours. It can begin as simply as sharing ourselves, sharing a story.

Meaning-making

“The more one forgets himself—by giving himself to a cause to serve or another person to love—the more human he is and the more he actualizes himself.”
Viktor Frankl

Meaning-making weaves tightly with presence and engagement. Meaning builds as we appreciate the small things and know how our actions serve greater problems. In challenges as enormous as climate change, it is often more meaningful to focus on what choices and leverage points we do have control of.

Crisis and grief, such as comes with the threat of cancer or planetary extinction, can lead people to find more meaning in life. Grief leads to meaningful shifts in behaviour, such as spending more time with family, being more charitable, volunteering, or deepening spiritual practices. Furthermore, this meaning can surface through community or counselling work with methods such as storytelling (storytelling to cope with grief around climate crisis is abundant).

In his highly popular book, Man’s Search for Meaning, Austrian psychiatrist and Holocaust survivor Viktor Frankl reminds us of the importance of engagement in finding meaning: “What man actually needs is not a tensionless state but rather the striving and struggling for a worthwhile goal, a freely chosen task. What he needs is not the discharge of tension at any cost but the call of a potential meaning waiting to be fulfilled by him.” Luckily, Frankl reassures us that simply our actions and responsibleness towards our everyday choices give life that meaning.

Perhaps that worthwhile goal is a liveable planet. Those actions and choices can be as simple as choosing sustainable transport, buying local and buying less, talking to loved ones, and pushing decision makers toward sustainable choices, away from fossil fuels. Add to that the power of community action; Hope for a better world is palpable.

Practicing Hope

“Hope is a verb with its sleeves rolled up.”
David Orr

A meme circulates from time to time, saying “When people think about travelling to the past, they worry about accidentally changing the present, but no one in the present really thinks they can radically change the future.” The intervention to this, I believe, is hope.

“Hope is a Discipline” – Mariame Kaba. Credit: @em_swami

For some, hope can feel defeating. But the future exists in the practice of hope. We can begin—today—to live stories of hope; Planting metaphorical seeds for the future we want to see written. But to plant those seeds, we need the hope that they will grow, or else what’s the point?

Whether in the world of cancer or climate emergency, we can practice hope by engaging, choosing our actions with purpose, and becoming active in communities. We can have personal daily practices of mindfulness, presence, storytelling, and joyful connection. We can allow ourselves to fall in love, even though it may be painful. We can fall in love with every precious moment we get to spend among the trees.

Collected Resources

Creating deep community and why that matters:
Born, Paul. Deepening community: Finding joy together in chaotic times. Berrett-Koehler Publishers, 2014.

How does meaning emerge from grief and crisis:
Brody, Jane E., “Making Meaning Out of Grief.” New York Times, 2019.
Lee, Virginia, et al. “Meaning-making and psychological adjustment to cancer: development of an intervention and pilot results.” Oncology nursing forum. Vol. 33. No. 2. Oncology Nursing Society, 2006.

A psychosocial healing strategy offered to cancer patients:
Cunningham, Alastair J. Healing Journey. Key Porter Books, 1994.

The importance of meaning in adverse situations (and life in general):
Frankl, Viktor E. Man’s search for meaning. Simon and Schuster, 1985.

For more on biophilia, look at the work of Edward O. Wilson:
Kellert, Stephen R., and Edward O. Wilson, eds. The Biophilia Hypothesis. Island press, 1993.

On the causes of our problems and our interconnectedness:
Haraway, Donna. “Anthropocene, Capitalocene, Chthulucene: Staying with the Trouble.” AURA, 2014.

How appreciating the little things can add depth and meaning to life:
Hicks, Joshua, and Martela, Frank. “A New Dimension to a Meaningful Life.” Scientific American, 2022.

Speaking about different points at which we affect a system and make change:
Meadows, Donella H. “Leverage points: Places to intervene in a system.” (1999): 980989.

For lessons about turning toward suffering, welcoming everything, and showing up whole (as well as more on living fully):
Ostaseski, Frank. Five Invitations: Discovering What Death Can Teach Us About Living Fully. Pan Macmillan, 2017.

To read more about how problem- and meaning-focused teaching helps youth (and us) deal with climate change:
Ratinen, Ilkka. “Students’ Knowledge of Climate Change, Mitigation and Adaptation in the Context of Constructive Hope.” Education Sciences 11.3 (2021): 103.

About dealing with climate anxiety through communities of action:
Ray, Sarah Jacquette. “Op-Ed: Is Climate Anxiety Bad For the Planet.” Los Angeles Times, 2021.
Ray, Sarah Jaquette. “A Field Guide to Climate Anxiety.” A Field Guide to Climate Anxiety. University of California Press, 2020.

Different ways to look at and practice hope:
Tippet, Krista (host). “Future of Hope.” On Being, 2021.

On living life fully by escaping existential avoidance:
Van Tongeren, Daryl R., “The Problem of Existential Avoidance.” Psychology Today, 2020.

Holding Pattern

There hasn’t been much change to my routine in the last few weeks. Not much news either, as I find myself in a sort of holding pattern. I am finding it difficult to write about myself amidst all the world’s heaviness. To find focus, I put together a playlist. Let’s start this entry there:

As I said, it’s difficult to focus solely on healing my own body when it feels the larger body of the Earth is also undergoing existential threats. It’s never seemed this heavy before. Is it the fatigue from two years of navigating a pandemic? The sight of love being co-opted and abused—a movement of toxic love-bombing? Is it the magnitude of information streaming from the internet? Countless streams begging for attention? Is it the sheer power of human technology? The exponential growth lines shooting away from our organic presence? The ability of these technologies to wipe out cities? To poison the Earth even more? Perhaps all these factors mark the equation for my current melancholy.

I can make out the reflections between my personal healing work and my response to global issues that threaten life on a much more global scale. So, I strive to choose my actions intentionally with each day I can get up. I balance my tasks, finding both challenges and relaxation. I welcome all my emotions, knowing they are arriving for a reason and that they shall ebb and flow as terrible as it is in the moment. I remember to breathe.

Still, I feel discombobulated. I don’t always get it right. I lose my temper. I scream. I yell cruel words. I make mistakes. I always hope I find my way back to my centre. I’m not seeking any unattainable perfection, no perfection at all. I’m just hoping that my actions result in a net positive, one day at a time.

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.