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A Great Trail

I have always been a writer, but I’ve treated this gift like a loyal pet, something that will always be around while I go off and do other, more ‘important’ things. I need to ‘make a living’, I need to work, I need to volunteer, I need to maintain my friendships, I need to play video games. But even loyal pets die.

Photos throughout are from my annual hike of Centennial Ridges in Algonquin Provincial Park. I almost didn’t get to do it. So very glad I did.

It’s 2pm and about time for my needle. I need to give myself an injection of Fragmin, a blood thinner, every day in order to stave off blood clots. I have CAT, which isn’t as fun as one might think by the acronym. It’s Cancer Associated Thrombosis, blood clots because I have cancer.

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There are some perks, admittedly, to having a cancer diagnosis, but CAT isn’t one of them.

It’s 2:08pm and I paused writing to take the shot. My belly is covered in bruises. Before the blood thinner, I was a very quick healer. A pinprick wouldn’t even last a day before the scab fell away. Now I see tiny scabs from over a week ago, just-yellowing bruises over two weeks old, all peppered around the scars from the laparoscopy-turned-laparotomy two and a half months ago. Even these scars, by now, would normally have become flat and white, but instead are still red and raised.

There are a lot of ways I’ve had to get used to my body again since being diagnosed with ovarian cancer.

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Last night, it was 4am before I called it a night, playing Horizon Zero Dawn on the playstation my girlfriend Kai brought over, along with the 58inch 4k TV. Playing video games is one of the few reliefs I get from the constant mental monotony, the internal cancer banter.

Once I got into bed, I knew sleep would elude me. It was almost 6am the last time I took note of the time, but I remained awake after that. I practised deep breathing, brought my distracted mind back to centre, and allowed my body to rest, knowing that if sleep is impossible, stillness is the next best thing.

At 8:30am, my phone rings for the first of many times.

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It’s Soldiers Memorial Hospital in Orillia, looking to book my pre-surgery CT scan. The gynecological oncologist wants to make sure the cancer is more or less as we expect it to be, as it’s been a while since I’ve had any imaging. The last time I had a CT scan, I had an allergic reaction – a few hives on my belly, hip, and legs. Because of this, the technician marched me over to emerg, where I waited four hours to get two Benedryl. From that point on, I have my first allergy – I have to repeat it every time I talk to a doctor, nurse, or intake staff. Despite it happening at Soldiers, they don’t have this information on file. I fill in the staff on the phone, and she lets me know I’ll need a prescription for prednisone to take prior to taking the CT dye to prevent another reaction.

The next call is Royal Victoria Hospital in Barrie, where my gyne-onc works, calling to ask why I’d left a message the day before. I had already answered this to someone who called me back at end of day yesterday, but I replied again: “I’m calling to check if Dr. Ball has space in her surgery schedule to move my date up.” She says she’ll check and call me back.

My insurance company calls at 11:30am to ask where I am regarding my timeline to return to work. I haven’t received any income since December 17th – it’s a crappy time of year to fall through the cracks. The paperwork is with the doctor, I tell her – but I do have a surgery date. January 28th, with a CT scan on the 7th, and a pre-op on the 13th. She tells me to email her when I find out what’s happening with the paperwork, but that, yes, I will get paid retroactively for the time I’ve missed. Perfect, maybe I can pay some bills. I don’t cry on the phone with her this time – I hope she’s relieved.

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Around noon, there’s a bang on my front door. I know it’s FedEx with a package for Kai, so I get up, trip on the leg of my pyjama pants, crash land on the floor, and scare the everloving shit out of my new housemate, Bozo the cat. Bozo was recently returned to the animal shelter after going missing in September. He’s Kai’s cat, but he’s staying with me for now, because he needs a people and I need cat energy after Priestess’ death. Except for this event, he’s been an absolute joy.

Being a scaredy cat, Bozo jumps from the windowsill across my messy desk, catching the cord for my SAD lamp and clotheslining absolutely everything, including a vase that was empty of flowers but not of old flower water. The disaster takes so long to happen I have time to sit up from the floor and cover my ears, anticipating broken glass (the only thing that didn’t happen, it seems). After the cacophony, Kai and I burst into laughter and I make it to the front door, thinking it probably sounded like I’d upended the house trying to get there in time. Kai opens her package and I try to coax the cat out from under the bed.

At 12:15pm, RVH calls back to say that no, unfortunately they cannot move my surgery date up. At first I’d been comfortable with the January 28 date. But, though I didn’t expect a miracle, I had hoped to move it up because the idea of being in this amount of pain for that long agonized me. I also have concerns that the cancer is accelerating because I can longer cross one leg over the other without causing severe pain in my hip, and it hurts to cough or laugh. Hurts more, I mean.

After that call, there’s a reprieve. Then at 1:50pm, Soldiers calls again to confirm my CT scan – on the same day the appointment was made. Then I called my nurse practitioner to arrange the prednisone prescription.

I’m so tired.

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I don’t like talking on the phone on a good day. Having to have that many interactions about a disease I certainly don’t want just exhausts me. I have to put on my noise cancelling headphones because audio stimuli overwhelm me, even though I’m sitting quietly in my room. The headphones have been a lifesaver, not just at the hospital, but day to day. They make it so I can focus, so I can keep that niggling annoyance from creeping up without me noticing, causing me to wince and cover my ears.

I tell a friend about my pain level and she recommends asking my doctor for a better painkiller. I have.

I see someone I haven’t seen for a while and in response to her asking how I am, I tell her about the diagnosis. She tells me that’s something to ease into in a conversation, not lead with.

I tell a friend about my fear of the side effects of early surgical menopause (like memory loss, heart disease, stroke, osteoporosis). She tells me my fear is “an amusing ageism”. I’m not afraid of age. I’m afraid of poor quality of life.

My mom doesn’t feel involved in the process, but it’s complicated to talk with her because her own cancer experience caused trauma.

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Everyone wants to be updated, involved, supportive, and that is amazing. I feel I am the centre of a wealth of love and support. People tell me they are thinking about me, praying for me, and I feel that – it’s tangible. I am so very grateful.

But…

I’m tired of cancer. I’m tired of no good options. I’m tired of phone calls from strangers that lay out my path in weekly intervals. I’m tired of saying, “I’d love to go, but I need to see how I feel that day.” I’m tired of all the medications I have to take and knowing that I’ll have to take some forever. And I’m tired because I’m hurting – I have tension headaches, and a rib out, and ocular migraines, and fucking cancer. I’m tired because I’m not sleeping. I’m tired of being afraid.

And I’m angry. I’m not one to scream ‘that’s not fair!’ because my reaction to injustice is to try to change the world. And a lot of the times, even if I don’t see the immediate result, I know I tried, I did something. With this, there’s nothing I can do about the course it’s taking. And yes attitude is everything and yes positivity matters – but I needed to get there. I needed to journey there. Anger is okay – anger is good. I’m angry on behalf of myself – this isn’t something I want to happen to me. I’m not okay with this! I had a mission, I was on a path. How dare this derail me! I don’t want to know this stuff! Why? Why?

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Breathe. I have become closer with my friends who’ve been through medical disasters. I can say, “I just don’t like this,” without sounding like I’m whining or like I think I’m ‘beyond’ this or wish it had happened to some else instead. There’s no reason for this to happen to me over anyone else, other than it happens to so many people. People hear anger and they want to turn off that valve, to redirect it, to snuff the flame they fear I will lose control of. But my anger isn’t a conflagration, it’s energy. Anger made me less afraid of dying on the surgical table. Anger made me active in this process. Anger cleared space for acceptance.

And I’m not just okay. I’m amazing.

I have seen the burning of both ends of my candle, and I can’t let that light my way anymore. I have seen the thinness of my scattered, though devoted, energies – everything is so important, I had to enter every fray. Not anymore. My core values have not changed – if anything, they’ve intensified. I am a renewable resource, but I need time, space, and stillness to renew. I have to decide how I am going to exist in this world. What I can accept and what I can’t – where I put my energy and what I demand in exchange for it. My self-care is now survival, and it’s revolutionary.

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I have always been a writer, but I’ve treated this gift like a loyal pet, something that will always be around while I go off and do other, more ‘important’ things. I need to ‘make a living’, I need to work, I need to volunteer, I need to maintain my friendships, I need to play video games. But even loyal pets die. What I actually need to do is use this skill, my primary skill, to change the world for the better. There is a reason my mind and my fingers are perfectly matched, why I can type just as fast as I think and think very fast indeed.

There are no wrong paths in life, true, but I know a great trail when I see one.

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When I first got diagnosed and got taken off work because of the pain and incapacitation from the blood clots, then surgery and recovery, now another surgery and recovery, I thought, this is a mixed blessing. Maybe I can finally reset my schedule, take the break from shift work to create the life I’ve always wanted. Wake up at 7am, start the day with some journaling, go to yoga or practise at home, go for a walk, meditate for thirty minutes, cook all my meals with local, organic food, keep my home space tidy, write a few thousand words, answer texts and email promptly, nourish all my friendships, read a novel, and go to bed early.

I really did want that, and I thought I was capable of it. And maybe I will be, when that’s what I need. But that’s not where I am right now. Right now, I’m fucking ecstatic if I just write something in a day. And if I waited to do all those things before I wrote, I wouldn’t have written this.

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After my surgery, I didn’t write. I felt submerged, held under by fear, anxiety, and pain. I let my thoughts whirl, retreat, return with a vengeance, set up camp. Because I didn’t write, nothing left my mind. I felt like I radiated toxicity. What I did in a day was not that lovely, inspirational list.

In fact, what I did was closer to this: if I slept at all, wake up early, while it’s still dark. Struggle to my feet, struggle to stand up straight. Make it to the bathroom – peeing felt like my organs were being rearranged and otherwise eliminating was difficult or impossible because of my pain meds. You know, the ones that don’t work. Back to bed, then, until the afternoon, usually late enough to make me upset that I’d wasted so much daylight. Maybe a little walk, once the blood clots got better. Definitely a few good cries. I’d eat whatever Kai brought me, or the food my editor from the Doppler made for me. Or I wouldn’t eat, because my appetite got trashed by the meds and the pain. I would return to bed early in the evening because I was exhausted and wanted out of that mental state, but sleep wouldn’t come. I’d cry in the bed beside a sleeping Kai, for my body, for the choices taken from me, for the choices I’m forced to make, for every woman who went through this without a circle like I have, without benefits like I have, without free healthcare like I have.

So if you add writing to a day like that, I’d call it a roaring success.

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I know I am moving toward something big with this. I am thrilled and anxious to see it manifested. I don’t know that I’ve ever felt more ‘along for the ride’ than I do now. I have control over so many things, but not everything. And my body is done screaming at me to get attention. I won’t be ignored anymore.

Yesterday, I was going through old notes on my phone, deleting some. I always make a note to bring to the Nurse Practitioner, listing the things I want to discuss. Otherwise I end up forgetting the main issue and leaving her a rambling voicemail. I deleted a few more recent notes (“ask re genetic test for BRCA, change sleeping pill script, discuss bloodwork, ask for samples of feramax”) and then came across one from March 18 2019. It read:

Lump on head – skin tag?

Test for arthritis

Review prescription

Weird period thing

Ask for samples for robaxacet for shoulder injury

That was the first time I’d discussed any of what would later become ‘that cancer stuff’ with my nurse practitioner. It was the first time that the changes I’d observed in my period were odd enough to bring to light. It’s only because I know my body so intimately that I knew something wasn’t right and I didn’t ignore it.

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That. That’s what I’m so grateful for. That I knew I had to get to the bottom of the ‘weird period thing’. I’m grateful my NP took me seriously. I’m grateful that my doctors are women who know that some things just shouldn’t be brushed off. Ovarian cancer is dreaded because it’s way too often caught in late stages. We caught mine early.

Here is the very first cancer poem I’ve written:

I always thought any ticking of a bomb

Would come from outside of me

The deterioration of our biosphere

Or the crosshairs of a man who hated me

for my shared and spoken truths

I denied that my body contained the capacity

For this most stealthy of betrayals.

Another example of my dedication to achievement,

Even my cells overdo it

I always suspected I was too much

How could I turn against myself like this –

Just as brain and body began to integrate?

Just as I got the courage to tell myself

You are good.

You are whole.

Have I lied? Am I wrong?

How could I have so convinced myself that I was done growing?

I’ll never be done

I learned that

from cancer.

I love poetry because it’s stripped down and raw, because word choice and flow create an experience. I’m not a very metaphorical person, my poetry is literal and accessible. And for some reason, unlike creative writing, unlike my column, unlike this, I don’t care if it’s good. It doesn’t need to be good; it just needs to be.

Kind of like me.

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I thank you for reading this, for being a part of my journey. I thank you for being present and generous with your time, for allowing my world to overlay yours for the time it took to end here. I don’t get to choose what you take away from this, if anything. Maybe your conclusion is that you need to let go of ‘the perfect schedule’ or maybe that there needs to be space in your world for anger on behalf of yourself. Maybe it’s that you need to try your hand at, or get back to, writing poetry.

Any one of those would be remarkable. But if I could choose, I would insist that you take your body seriously when she asks you for help. That you notice her subtleties and shifts, that you thank her for speaking up. That you act when things don’t feel right. And that you insist on your own importance if you aren’t being heard.

Because you are important – and you are your body. Just as I am mine. With all my scars and tears and estrogen and cells and firing synapses. Indivisible.

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Not the trail – in Barrie after an appointment. By Kai. ❤

 

Next: Well, it’s not like I was using it

4 comments

  1. Beautiful photos and words. Your expression is bang on as a care provider, I see this struggle every day and you have captured your experience eloquently. I will share this with my colleagues so we are able to increase our empathy and understanding.

    Liked by 1 person

  2. Keep fighting, keep raging, keep seeking peace, each one a step forward across the abyss of ‘not knowing where the other side is’. Every woman who’s gone ahead of you knows these things. We, too, are your ancestors.

    Liked by 1 person

  3. Its ok to be angry
    Having cancer is outrageous and infuriating , heartbreaking and most of all cruel and emotionally devastating
    And it isn’t fair
    You write so eloquently and beautifully about a not so beautiful journey you should never have been forced to make
    Thank you for sharing , thank you for making a difference with your words and wisdom
    You are an amazing Warrior

    Like

  4. Kathleen

    I’ve just read your work here and am blown away by your thoughts, your words, your skill at speaking about your experience. You have a voice the world needs to hear. Your very being is a gift to those in your immediate life and those you will meet in the future. I thank the universe for allowing me to know you. Take care and know that I think of you often.
    Thelma

    Like

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