personal journey – Page 2

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.

Month One

One month with a cancer diagnosis. It’s moved quickly and yet so slowly as well.

August began in a whirlwind. I had a DJ gig, a teaching appointment, and hopes of finishing my thesis. I had a colonoscopy, MRIs, CT scans, bloodwork, and bone scans. I had appointments with gastroenterologists, surgeons, and oncologists. I had to tell loved ones and confront the sense of dread weighing on me.

It wasn’t long before my work and school commitments fell away. The only thing left was to wait, to focus on healing, and to endure the waves of nausea and cramps from the cancer in my colon and liver. Waiting is difficult for me. I’m impatient. I want the cancer out like a house guest who’s overstayed their welcome. Sleep helped to pass the time. Even with the fatigue, one can only sleep so much.

I told my friends and family about my diagnosis. I received help and several messages (many still unreplied to). I think about them everyday, like I should organize something, but a general discomfort pervades even simple things like that.

I’m trying to find a comfortable space to do things. I’ve set up inviting plants friends everywhere. I’ve decorated with the puff of wool, dried grasses, and simple beeswax candles I’m told to love so much. And yet, I’m restless and uncomfortable. I don’t know where the days go when I tally up the minutes: I meditate, stretch, line up rides, lie down, feel sorry for myself, wish things were different, meditate, try to read, try to watch tv, try to clean, try to be helpful, hate myself, hate this situation, meditate as though it’s the only cure, pace, compose thank you notes and stories in my mind, sleep.

I’ve received relief from work and school. All I have to do is heal now; I remind myself of this everyday. All I have to do is heal. I feel the force of a transition in this healing. The way the cancer is building in gooey, mutated masses within me. That house guest who’s still here even though I’ve asked them to leave three times. The house guest who’s clumsy and loud. I wrap this cancer, this overstayed guest, in a large leaf and I swaddle it. I don’t know why yet. I’m not even sure I should. There’s little direction here.

I’m just doing my best. I’ve always done my best.

I enter the new month greeted by chemotherapy. It is unknown and scary. Questions prevail but only time will tell how my body reacts. There are predictions, but everyone is different. Chemotherapy will help stop the cancer from replicating and spreading. It is the fortification of a boundary between “me” and “it”. I will heal, the unwelcome guest will tire and shrink.

Near the beginning of the month, I wrote a poem about my uninvited guest. Later, I came across Rumi’s poem titled The Guest House. The latter prescribes a practice of inviting and being grateful for all the emotions that come. I was struck by the contrast of my own moods towards cancer and Rumi’s wisdom towards emotions.

A Welcoming Home
by Kat Dornian

A welcoming home

might have loose bounds
allowing in all sorts.

A flustered flurry
of a party inside.

Warmth, bounty, comfort
for anyone who comes.

A home of love
torn apart e’ry night
by everyone needing
a warm hearth.

A home of love
flaking away with each guest.
Carried in pockets, upon shoes,
replaced with trash, dirt.

A home of love
devoid of boundaries means
all move in… until
I no longer remain;
A stranger in my home
no traces to be found.
Eaten from the inside out.

The Guest House
by Mewlana Jalaluddin Rumi, translated by Coleman Barks [Source]

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
As an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.