Chemo diaries: Where my queer witches with cancer at?

secretly hoping

A brief timeline of my 2018 thus far.

…testing…

 …waiting… 

January 9: X-ray results indicating an obliterated aortic pulmonary window.

What’s an aortic pulmonary window? (obliterate /əˈblidəˌrāt/: cause to become invisible or indistinct; blot out).

January 17: CT scan results indicating a large anterior mediastinal mass measuring 9.2 x 3.6 cm with minor extension into the superior mediastinum and mild mass effect on the left brachiocephalic vein.

What’s a mediastinum? (mediastinumˌ/mēdēəˈstīnəm/: a membranous partition between two body cavities or two parts of an organ, especially that between the lungs).

January 26: Anterior mediastinal biopsy. Crushed tissue sample. Results inconclusive.

How could they fuck that up?

February 19: Second anterior mediastinal biopsy completed.

Why did it take a month to get another biopsy?

February 25: Diagnosis: classical Hodgkin’s lymphoma. Stage IV.

you. have. cancer.

March 5: CT scan chest abdomen pelvis. The anterior mediastinal mass consistent with biopsy proven lymphoma has increased in size. The mass now extends superiorly to the sternal notch, just below the thyroid gland. Maximal axial diameters of this tumor at the level of the mid ascending aorta is 9.7 x 4.7 cm compared to 9.2 x 3.8 cm before.

there is a tumor in your chest,

and it is growing.

it is compressing important things like pulmonary veins,

and they say you will more or less explode and die if it continues.

that’s called an “oncological emergency”.

March 15: Search and destroy: begin chemotherapy.

Treatment plan: It’s as easy as A, B, V, D!

A Doxorubicin (also known as ADRIAMYCIN)

B Bleomycin

V Vinblastine

D Dacarbazine

Common side effects include:

  • nausea and vomiting (may be severe),

  • diarrhea,

  • constipation,

  • loss of appetite and weight loss,

  • missed menstrual periods,

  • darkening of your skin or nails,

  • weakness,

  • tiredness,

  • eye redness, or puffy eyes,

  • mouth sores,

  • phlebitis (inflammation of veins),

  • lung problems: pneumonitis,

  • pain/redness at injection site,

  • flu like symptoms (chills, fever, aches),

  • peripheral neuropathy (numbness or tingling in the hands or feet),

  • photosensitivity (sensitivity to the sun – may get sunburned quickly)

WHAT THE FUCK IS GOING ON?

Side effects the medical establishment does not tell you about, and couldn’t help you with anyways.

  • existential ponderings:

    am i the only rural queerdo with cancer? #isolation.

    am i the only one who was filled with dread upon realizing i would lose my pit hair?

    am i the only one casting protection spells in the CT machine? radioactive iodine don’t got shit on witches.

    am i the only one asking the chemo nurses if it’s safe to shit cytotoxic chemicals (see: toxic to living cells) into a hole in the ground? can’t flush twice in the woods.

    am i the only one asking the cancer society volunteer why the “look good, feel better” chemo beautification program is just for women? patriarchy doesn’t like bald bitches. #beautynorms

    am i the only one who doesn’t feel like being a #cancerthriver is empowering? i’m fucking pissed. i’ve got a whole lotta big feels right now. i don’t want to adopt some posicore mantra of how i’m going to emerge on the other side of this battle a different person (even though that is true, as my cells rebirth themselves one by one, i am basically a phoenix). if you don’t emerge, does it mean you didn’t try hard enough? didn’t eat enough kale salad, pump enough coffee enemas into your ass? everything happens for a reason. #whatdoesn’tkillyoumakesyoustronger.

    fuck that.

    i’m sick of being strong. i need a 3 hour nap on the days i get out of bed and i’m bored of my life revolving around eating at 2 hour intervals so i don’t wither away into oblivion because the thought of food makes my stomach churn. i don’t feel strong. i feel small and sad and lonely.

    posi

  • dumb shit people you barely know feel entitled to say to you:

OH MY GOD I DIDN’T KNOW YOU WERE SICK! *offers non-consensual assault hug* i’m sending you so much love and light.

you seem so calm about all of this.

*non-consensually touches my head* I just love that look!

my neighbour’s hairdresser/uncle’s first girlfriend in university/co-worker’s stepdaughter totally beat cancer by eating organic weed candy/juicing 600 lbs of chaga a day/going to this radical alternative cancer care clinic in Switzerland.

when you look in the mirror, can you still recognize yourself? 

yes, my cells mutated and formed a 10cm tumor in my chest and now i have to take poison that makes my hair fall out and my gut lining break down and my mind feel like i’m walking around in a haze of impenetrable fog where i can’t remember what year it is and the most exciting thing that happens in my day is managing to take a shit, but i’m not sick. i get to define what health and healing looks like for me. #chemowitch.

i’m also not okay. i’ve been poked and prodded so many times in the past 6 months my veins are sclerosed and i had to have a cyborg dome inserted into my chest so the poison can still be injected,

cyborg

and one time i ended up in the ER after being awake for 24 hours in such all consuming, blinding, torturous, pulsing, burning nerve pain it felt like every neural pathway in my body was lit up like being struck by lightening, sticking your finger into an electrical socket, and pulling bread out the toaster with a knife all at once, while hallucinating i was being shot by tiny little fairies with thousands of arrows, over and over and over until i finally got some fucking hydromorphone, and even then i couldn’t sleep because i was so strung out and high on pain, like a bad trip that just won’t quit, and then i had to fly to vancouver wearing a mask in the plane because i can’t breathe recycled germ air that might infect my compromised immune system, so they could stick me into their radioactive time machine and tell me if the poison was making the tumor shrink, and then come back home and go in for another dose. #saturnreturn #keepinitreal

my eyebrows are so thin when i look in the mirror i feel like i’m growing backwards into an embryo and sometimes i wish i could crawl into the womb and float, and just be held and rocked in the tides by the great mother, instead of being suspended in this toxic waste dump of chemical sludge that is what my insides feel like. i don’t know how else to convey the sense that every cell and organ in my body can’t quite remember what they’re supposed to be doing and so everyone is bumping into each other like those bumper car games i hated as a child because i always ended up crying in the corner getting rammed repeatedly by all the bullies, and it’s giving me a headache, and i want to vomit but i’m taking more drugs to suppress that, and wow having cancer now isn’t as bad as it would have been 25 years ago, hey? but it still mostly sucks.

A brief timeline of my 2018 this far, continued.

March 29: Chemo round 2.

feel like shit. recover.

April 12: Chemo round 3.

is having cancer making me feel embodied in a way i never have before?

nothing like brutal physical symptoms to remember you’re in a body…

April 26: Chemo round 4.

got the sads. the why is this happening, it hurts so much, why does it have to be so hard sads.

just waiting for change, for something different, feeling weak and afraid that i’ll be stuck here forever, this place that feels so alone…

May 11: Chemo round 5.

pre consult nightmares.

can something be both traumatizing and healing?

my mouth tastes like i’ve been sucking on pocket change.

the smell of antiseptic makes me start trembling.

May 25: Chemo round 6.

halfway thru hell.

#stillalive

stillalivecrop

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On displacement and coming home: A prayer to the ancestors in dark times

weather-witches-molitor-14

*a note: I am writing from the perspective of a white enculturated settler, holding the intention of unpacking the privileges inherent in these identities, and dismantling the systems of power that allow them to be. I would like to make special mention of Rain Crowe’s work and course The Burning Times Never Ended, from which my perspectives and writing have been deeply influenced.

Dear sweet ones of past and future,

Thank you for my life. It is Samhain, time of the thinning veils, place of in between worlds. I can feel your spirits alive in my field, your memories flowing through the waters of my veins, your stories alive in the rock of my bones. We are walking through shadow in these dark times, blowing dust and cobweb from ancient artifacts that connect us to who we are. Threads of in-tact culture are worn thin and frayed by the machine, and the spell of cultural amnesia leaves us drifting through a haze of displacement, of forgotten roots and severed relationship to home. We are the spiritually orphaned; ghosts of our lost origins haunt the living world in the destruction of the sacred. This is my prayer to you: please help us re-member how to be human, how to walk this earth in good and gentle ways, how to open ourselves to the strength in our lineages, to use these gifts for healing, to liberate ourselves from oppression.

So mote it be.

My name is Alison Josephine, named for my maternal great-grandmothers, Alison Marjorie and Josephine Helen. I am a fifth-generation white settler born on traditional Haudenosaunee (Iroquois), Ojibway/Chippewa and Anishinabek territories. Some of my ancestors emigrated to Canada between 1878 and 1895 from Wales, Devonshire, and Somerset, England. This is what I have pieced together from old family albums, faded photos of strangers who share my bone structure, the shape of my eyes, the stories untold passed down through silence. It is my commitment to reclaim what has been lost, forgotten, deliberately silenced; to be accountable to the inherited legacy of white supremacy and settler colonialism.

I was born to a family with dangling roots. Like a clump of ambiguous greenery plucked from the earth and transplanted into shallow soil, we were all but washed away.

I have been socialized into a culture that encourages this dangling root syndrome; proclaiming there is no need for relationship to past, as a genetically engineered, cellophane encased future of blissfully nihilistic detachment beckons. It is a profound struggle to remember who we really are.

As I’ve journeyed through my life, it has became increasingly important to me to understand stories of origin. My confusion around identity and belonging, struggles with self-esteem and anxiety, the encompassing ambivalence- have begun to seem more and more related to this lack of relationship to previous generations, to a sense of place. I’ve been blessed with the opportunity to participate in Rain Crowe’s course The Burning Times Never Ended, which provides a context for this disorientation around feeling fully connected to life. Our roots have been burned.

Asking my family of origin questions about where we came from and why we left our home of many generations solicits vague and uninterested responses: “to pursue better opportunities”. The vast and unique tapestry of lineage has been reduced to a generic one liner, designed to end further questioning, to leave well enough alone. We’re here as white settlers, the privileged class, what more do you need to know? There is trauma woven in the silence of these responses; so thick it has disfigured the patterns of our truth.

White people can‘t heal until they come to terms with the Witch persecutions.”  – Starhawk

This is a profound piece of historical trauma that has been denied, minimized, negated and gaslit. I can remember as a child experiencing deep confusion around the validity of my experiences, and how to tell what is “real”. I recently witnessed a friend experiencing activation in her nervous system after a triggering conversation: increased heart rate, shaking, laboured breathing. As we processed the experience, her mind created doubt around the physical reality of what her body had just gone through, of what I had seen with my own eyes. This internalized gaslighting is passed through blood and breath, embedded so deeply that we question whether our experiences of trauma are legitimate, or if we are fabricating the observable responses of a triggered nervous system. The cellular memory of terror, of being hunted and persecuted, is alive in our bodies, in the silence of what didn’t get passed down, in the empty spaces where lips stop speaking abruptly. We are recreating patterns of destruction and trauma from our unacknowledged and thus unhealed wounds. As Rain so eloquently says,

we must stop burning each other.

And to do this, we must align ourselves with the work of understanding shadow, the atrocities we have experienced and committed, the rupture we continue to replicate by remaining complicit with systems of domination. We must believe our magic is real.

This Samhain, I received a gift. Within the cauldron of the burning times course, sitting with the deep ancestral trauma of displacement and estrangement, someone who also shares Welsh ancestry offered me a word. Hiraeth. I wrote it down and made a mental note to google it later. Although the internet says there is no direct english translation, some of the attempts include “homesickness tinged with grief or sadness over the lost or departed” and “a longing to be where your spirit lives”. Hiraeth. One word from my culture of origin that sums up the estrangement of my dangling root settler experience. A thinly veiled whisper, an invitation to honour longing, to create a sense of belonging through grieving displacement, through invoking the ancestors. Hiraeth.

A prayer to coming home.

Is it ever gonna be enough?

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About a year ago, I began to itch. I mean, I’ve been itchy before in my lifetime but not like this. It started on my back, this annoying little patch of scabby redness that intensified as I clawed at it, attempting to alleviate my symptoms (which all you itchers out there know is the worst idea ever). Then it went away and I breathed a sigh of relief. I kept trying to take care of everyone in my life but myself, living up well to the standards of my female socialization. When the rash returned, the itch volume went up, almost as if it was trying to get my attention or something…

Across the landscape of my pale, squishy belly formed a thick belt of angry bumps. A constellation, if you will. Just as bright, just as fiery, albeit not nearly as lovely. It raged on through the night as I tried desperately to relieve it using the same means that escalated agitation: scratching. How often in our lives do we apply this tactic of attempting to solve something without actually listening to what’s being asked for, only to increase the problem tenfold? If listening requires slowing down, when we’re out of sync, sometimes we get knocked out before we find a pause.

The summer months wore on and the rash climbed it’s way down to my legs, causing me to look like I was ravished by mosquitoes on a trip to the bush. I tried changing my diet. I bathed in oatmeal. I took the devil’s corticosteroid cream from the allopathic folks (I know that medicine can have it’s place but it was essentially useless to me, and cost $17 for 3ml. Bunk). Temporary relief followed by return with a vengeance. Throughout the peak of rashy intensity, I was supporting my mother as she recovered from a heart transplant, and enduring fairly significant emotional abuse from the surrounding circle of my family of origin. During the days, I showed up to provide all the care I could from my fierce leo heart. At night, I scratched raw and bloody.

What’s an itchy girl to do?

The circumstances of my life shifted from extremely stressful to less so as my mother’s physical condition improved, and I returned to my job as a support worker, being paid to provide care. The rash all but disappeared. Good riddance, I thought. Until.

The rash came back. I began singing to it, changing the lyrics of “the cat came back” to “the rash came back” (thought it was a goner but…) When your skin feels like a third degree burn and is full of craters inflicted by switchblade sharp nails in the night, you have to find your kicks where you can get them. But in all seriousness, it was increasingly extreme. After months of prowling the furry terrain of my lower legs, it spread upward to my arms, causing a significant increase in my distress as arms are more difficult to hide than legs. And when you can hide something distressing you can pretend it’s not happening, right? There it was, making dissociation no longer an option; staring me in the face while people gasped and asked, “what happened to your arms?!” This was only the beginning.

As I clamored to maintain that everything in my life was under control, continuing with the 600 million projects I usually have on the go at any given time [read: trying to keep the doom at bay], the rash rose to my back and chest. I started to feel slightly panicked when I looked in the mirror and was met by flaming red scales edging up my throat. But even then, I was able suppress this transformation into a more dragon-like state: just zip up a hoodie and keep doing life. (And find a way of turning every conversation into something that relates to itchiness).

I went to work, bathed, cooked and provided a listening ear for the folks living with disabilities I support. I called my mother and absorbed her depression. I showed up to teach workshops, I started my garden, I provided care for infants. I told myself I could always be doing more. I wondered: is it ever gonna be enough? And at night, I scratched raw and bloody.

As I was preparing for an intense journey up north to support the Unist’ot’en direct action camp, the rash shifted from dragon scales to full out hives. Now hives are not an easy thing to ignore. They are angry as a hornet’s nest you accidentally bashed with a stick. And when you scratch them, they release their fury tenfold. Convinced I must be allergic to sugar, allergic to gluten, allergic to maybe everything? I stopped eating briefly, and completely lost my mind (obviously). Up until the last possible moment, I held it together. And then I fell apart.

It didn’t occur to me as a legitimate possibility that the heat exploding out of my body could be stress-induced. I was convinced it was originating from any other source than the most obvious- I was completely and totally overwhelmed by my life. Rather than a food allergy, it has become clear to me now: I am allergic to capitalism.

I went to see a Doctor of Traditional Chinese Medicine, who told me I have wind in my liver and heat in my lungs causing this rash. Well neither of those sound too great to me, but the piece that really got me was her assessment that I shouldn’t worry so much about my diet, and work on having better emotional boundaries so I’m not always processing other people’s shit. What? You mean to say being emotionally overloaded can actually cause physical symptoms of distress? Duh. *facepalm*

I am a person who meditates. I live in the forest where there is no cell service and drink water that flows from the creek outside my cabin. You would think that sounds not so high on the stress meters. But guess what? The pressures and demands of capitalism; of gender performance; coping with intergenerational trauma and the reality of embodying a human experience in the 21st century colonized world are all really fucking stressful.

This experience led me to making a direct connection between the intellectualized concept that we replicate systems of oppression in our bodies and the lived reality of how that impacts our health and well-being. If a liver full of toxic emotions can cause an angry, relentless skin rash then what is the relationship between my mother’s lifelong depression and subsequent heart replacement at age 62? And, as the title of this post suggests, when will what we do and who we are be enough? If I run around my life frantically trying to contribute to dismantling these systems of destruction, while on the inside ignoring my own emotional needs and limits, what am I really contributing to other than my own self-destruction? If I am oblivious to my internal distress meter, how can I reliably show up for anyone else? It’s a tough habit to break- everything about being socialized to perform as women tells us our needs are secondary to those around us. Since emotional labour is generally unpaid and undervalued if acknowledged at all, I often find myself struggling to find a “no”; I can get stuck in cycles of giving past my capacity that seem almost impossible to escape. And sometimes it takes the body making a strong boundary in the form of a health crisis to wake the mind up to its habits and patterns.

I often get a visual of myself throwing rocks at a giant machine that’s steamrolling everything. Inevitably, it will flatten me too, as it’s designed to. The machine is an overwhelming thing to take on when you feel like you’re responsible for holding it at bay. Lately I’ve been asking myself: Does it take an entire system collapse to rebuild something more sustainable? A way of being in the world that is harmonious and cognizant of interconnection? In the case of capitalism, yes. In the case of our bodies existing within the paradigm of capitalism… Perhaps sometimes, also yes.

This past lunar cycle brought me to the peak of mental/emotional collapse as well as eyeball to eyeball with the beast of consumption. (That guy’s the worst.) You know who I’m talking about- the one with the alluring tactics of self-destruction through overindulgence; the one with the insatiable hunger for more, that can never actually be attained. It’s a hunger that arises from deep within, calling us to find liberation- and yet when the dissonance of our world makes that liberation feel unattainable, we find ourselves reaching for the quickest way to fill the void. To silence the ravishing hunger that threatens to destroy us if we don’t listen well.

There are transformative powers at work that seek to liberate us from the impossibility of living estranged from our true Self. Ironically, we can find ourselves self-destructing in attempts to escape this transformation because it is often painful and messy. Self-destruction can take many forms; from eating that whole bag of cookies for dinner to getting blackout drunk to obsessively and manically taking on more projects- there’s no end to the ways in which we apply our creative energy to quell our inner rebellion. We are tethered to a toxic system that abuses the resources we depend upon to exist, and we mirror this abuse in the way we treat ourselves and our own bodies. This is all well and good to intellectualize- once you start unpacking the systems we live in, it gets pretty clear, pretty fast that everything is a mess. Why is it so hard to see when you’re living it on the daily? When your body is screaming at you? Is the pace we’re operating at so turbo speed that taking a moment to truly reflect is not only unlikely to fit in our schedules, but also becomes terrifying when we don’t regularly visit our deepest yearnings and truths?

I love deconstructing concepts and rearranging them to find new layers of meaning. It just so happens that I’m also indoctrinated in a culture that worships mental abilities and capacities above all else. The wisdom of the body? A relatively new concept to me. But the body’s intellect is certainly as profound as the mind- it just speaks in a tongue we have been severed from, like the attempted colonial genocide of Indigenous language. Tuning the language of our bodies out is a necessity to continue operating at the pace globalized consumer capitalism requires of us. There’s no time for getting sick, that means wages lost. Injuries demonstrate weakness. The body is not to be trusted as it could fail us at any moment, but the mind and intellect will always prevail- certainly we can problem solve our way out of anything if we try hard enough. Until our body collapses, and all we can do is face our full selves- mind, body and soul trifecta.

Telling myself it’s enough, I’m enough, in each moment, is an act of resistance to a world that tells me I don’t deserve to feel this way. Thankfully, I’m not the first person to come to this realization, as it is profound in it’s healing potential. Because living as if we have enough, we are enough, RIGHT NOW, is the path to emotional sustainability. That’s the place I come back to when I start care-taking everyone else’s needs and forget about my own. May it be the medicine you need if you find yourself far away from who you really are; remembering the body is forgiving, and life wants you to heal.