healing journey – Page 2

Love

I’ve been wanting to write an update to my blog for sometime about my treatments. Not today though. What I can say for now is that I’m still flowing with the ups and downs of treatment. Or, at least, trying. Figuring out how to be myself, how to slip back into creativity after fatigue, and still manage all the appointments, prescription pickups, self-care etc. This week has been exhausting.

I’ve had some really good laughs though.
Belly laughing.
Laughs from resonating hearts.

This year I’ve been thinking a lot about love. I am awestruck by love. I remember first being in love and feeling my soul open up so wide, seeing life so vividly, the earth shaking, my being rooting so deep into the universe that nothing seemed to matter while at the same time every cell of every being seemed so sacred. It was awkward love as young love is, but it was really good love. It was love that saw me and wanted me as I was. An eros love, but an eros love that truly valued the life in me. It shocked me—and I don’t mean that lightly. It was life changing. Even thinking about it now I can feel my centre shaking like those days love washed over me.

I’d thought I’d been in love years before this. But, when I realized love does not impose rules on how one must be, I realized how one-sided my love had been. False love like this became easy to spot and it is abundant, unfortunately. The love I felt gave me purpose. But that purpose was just to be. And that purpose made me want the world to be well, if not flourishing.

“The transformative power of love is not fully embraced in our society because we often wrongly believe that torment and anguish are our ‘natural’ condition.”
bell hooks

I don’t know how I’ve been so blessed in my life. To have had that experience. To have met that person who cared so much for me that I wanted to ensure everything that makes life is thriving for them, for us, for me. I have been feeling so loved over this past year. I hope it is due in part to having loved well more than not; And I also hope that love can enter less hospitable places too… even if I am that place at times.

There’s so much to say about love. bell hooks is a good start. I may write more about it too. I love love.

The reason I wrote this: I was listening to a podcast the other day and the co-host, Autumn Brown, said, “love is what makes surviving worth it.” So true.

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.

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.

Loss

“These lovely people whose orbits have collided with mine…”

I was afraid I’d lose myself—become rewritten. I worried that therapy would erase me, my passions, my life.

A month into chemo, I find I am not lost. I am not erased. But this isn’t easy.

A month in, strong, strong emotions. I hate chemotherapy. There’s nothing to like about it—nothing to even fool myself into liking about it. It sucks. It makes me feel like shit. I barely have the energy to lift my head. My legs ache. If I’m not proactive with preventing nausea, I’m up at 2 AM puking. It sucks.

I’m losing my hair: “Thinning” (I’m unlikely to lose all my hair with the particular chemo I’m on). I’m caught by an unexpected sadness seeing my hands and fingers coated in the dark thin threads snaking every which way. I was warned, but tears wash away in the spray of the shower anyway. I wouldn’t mind being bald, honestly. The worst part is the numerous strands jumping out against my bathroom’s shiny white tile floor and threatening to clog the shower drain. I’m going to have to clean all this up. Barf. It’s yet another signal of how real this is and how powerful the chemotherapy drugs are. Even on this good day where I plan to eat a fancy dinner and take a long walk, my hair is falling out. I’m going to shave my head, I’m sure of it.

Unfortunately, my upcoming chemotherapy is delayed. A high fever, antibiotics, and borderline white blood cell counts indicate my body needs more time to recover from this cycle—a mixed blessing. As usual, I make sure to eat well and walk daily. I throw in some dancing for good measure. I still meditate every day—five hundred consecutive days of meditation this week! Add that to a couple of 250-day streaks broken by a missed morning, and that’s over a thousand days! I suppose all of this is healing. But, my heart is unsettled.

I feel myself on the rocky terrain of discovery, uncovering what each day and week are. I’m gentle with myself even as fears and passions lurch from my heart in a coded language I’m not sure I understand. I want to write and draw and change [eco-social systems of oppression]. Alas, I find myself boxed into my couch watching another season of British Bake-Off. It is what it is.

My birthday approaches. The love my friends and family have shown me over the last two months has been nothing short of the best birthday present I could ever want. The food, the company, the cards, the rides, warm blankets, and books. The list goes on, but there’s no way to fashion these words into a worthy monument of what they are: love.

It pains me that I can’t find the words to express how powerful this is. These lovely people whose orbits have collided with mine, who have shared in the joy of life, who have co-created places where we live fully and ready to take on a brutal world together. And at this moment, as I take on the lot this chaotic universe has landed me in, I find myself not too small or insignificant to receive care. Even as it feels the entire world is burning, I matter enough for people to show up at my door with baskets and blessings. There is so much space in love like this, the way it multiplies between us. And I find I am not lost.

I spent some time getting hugged by Shaker at Whispering Equine #horsetherapy

First Cycle

My first chemo cycle is coming to an end. Each cycle starts with a dose of drugs that halt quick-regenerating cells from regenerating. If all goes well, the cancer cells—mutant human cells—can’t figure out what to do and die off. Healthy cells get their act together and spring back.

Following the in-hospital bit of chemo, they gave me a bottle with more drugs inside. These drugs drip into my body for 48 hours. They put me on steroids to help as well. As a result, I feel kind of buzzed all the time. By day three, my body’s not doing so well. It’s starting to crash. Nausea and fatigue. My body’s healthy cells not doing what they usually do—not regenerating like normal. It’s exhausting, and I’m coming off the steroid buzz at the same time. I try to stay healthy. I wash often. I go on little walks. I eat protein-rich foods and try to stomach vegetables. Bread is digestible, so I eat that most. I remind myself that I’m safe and healing. I’m tired. I am so tired, but I try to get up every hour and sip some water.

Food is a struggle on these low days following chemotherapy. I stay away from soft yolks and soft cheese and raw nuts. I can’t eat and drink things at room temperature—a chemo side effect. It was just “weird” at first, but after every liquid spawns an explosion of soft-headed pins in my throat, I give up on anything below tepid. The warm drinks start to taste tiring, so I experiment with herbal teas. I long for a cool glass of water.

I begin understanding hope differently. In August, when I described hope to my journal, it was “a field of sunflower stretched to infinity” with sights set on images decades and years away. Slowly over the last month, hope has become much more active. Hope shows up in the acts of every moment. I think the best way to describe it is in the story of planting a seed (and I do mean this very literally, but it works metaphorically as well). Hope is planting a seed. I cannot control the seed’s reproduction, nor the sun and rain. But I can plant that seed in the best spot I know for it. I nourish it, and that act of nourishment is hope. I can’t protect it from every ravenous sparrow or insect or mouse, but I can give it protector plants nearby and build shelters. The seed may grow, or it may not. It may not make a stunning flower or a substantial fruit. That’s what gardening is. But hope is planting the seeds. And like this seed, I’ve been nourishing my own body as a practice of hope without expectation. My journal now reads, “hope is helping wounds to heal.” I’m finding so many actions that are hope. The actions are not reactionary nor transactionary; From eating my proteins and washing my feet to riding my bike for the planet and writing politicians for equity. I’m finding releasing hope from expectation makes it, well, much more hopeful to engage^*!

A week after chemotherapy starts, I feel myself bouncing back. I can go on long walks; I soak up the sun and smells of late summer. By day nine, I actually want to do things. I want to read, write, and dance again. It feels like there’s more sun coming through the windows. A couple days on, and I’m cleaning the house readying for the next cycle to start. Dusting, vacuuming, and washing. I trim my nails and take a bath. This cleaning will be a pre-chemo ritual. It feels good to clean, to prepare the nest for my body when it’s low. To put things in their place.

I enjoy a glass of cold water. Cold water has never tasted so good. I appreciate how much I have savoured the moments in my life like this. One day the memories will be broken apart into hundreds of trillions of atoms and dispersed across the cosmos; Right now, those moments fill my being.

My first dose of chemotherapy goes well.

* I must give credit to the sower of this understanding of hope: Frank Ostaseski in The Five Invitations. A number of years ago that book helped me to reframe forgiveness. My understanding of forgiveness moved away from forgetting and towards healing my own wounds. The book also speaks about not confusing love with attachment, which also resonates with me so much.