By Lucy

This week has been fairly quiet. It started slow – I misunderstood the instructions we were given for work shifts, and missed a night. About half of us did, so it wasn’t noteworthy enough to get me fired. Nunzio stepped up and spent about 3 days using the scanner in second sort, before he was baffled one too many times and declared he wasn’t doing it anymore, which leaves me as the only one willing and able to use them. MVP of the post office, I am.

Amelie missed the last day for some sort of drama, which she was unwilling to discuss and I wouldn’t repeat here anyway. She’s told me a bit of the background. I asked her outright and she confirmed we are friends (as opposed to merely friendly), so that’s all well and good. She confessed a preference for Australian guys, which makes me a little nervous she will realize there’s a Working Holiday visa for Australia as well as New Zealand, just when I was beginning to hope I might not be alone. I should probably inform her outright – I shouldn’t be afraid to travel alone. This is the path I’ve chosen to walk.

I had a few guys at work assume I’m well travelled and a biker, independent of one another. I’m glad that my talk and bluster has paid off in the intended way, although the biker assumption came from the single line of kanji I have. In his defense, I do wear full length pants and full length sleeves at work, so it would be hard to tell if I had additional tattoos.

The silvery blonde has worked, I no longer get carded at the liquor store. It’s made me a little wistful, so many things I’m discarding.

The casting call went well. The designer is a small one, unfamiliar with proper photo shoots. She’s decided to custom tailor dresses for us, which is not usually how that works, but I also have a hope now that I might get to keep it after the shoot. They want me to do some punk poses in an evening gown, which I think my new hair and attitude suit very well. The only other female model was entirely new and inexperienced. The male model was an excellent specimen who stripped off his shirt without hesitation, and I had to leave before I started eating the eye candy.

I went over to help Luna pack this weekend. I’ve told people that she’s heartbroken, and she is, but like me her heartbrokenness is repressed into shell-shock. She was robotically instructing me what to pack and labelling boxes by rote. I tried a few times to prompt her to talk to me and got some animation, but mostly she just wanted to finish packing and toke herself into a stupor. Winter has abandoned a good chunk of her furniture, as well as her cat – since carted off to another home – and left Luna in the tiny apartment, strewn with someone else’s detritus. Winter even cancelled the internet and took the modem with her, despite it being 2 weeks til the end of the month, and Luna works from home. Which is honestly the rudest, most ignorant thing I could imagine doing to even a mediocre roommate, which Luna was not. She was a fantastic roommate and frankly better than Winter deserved. Luckily the friend she is staying with was ok with her functionally moving in this weekend.

It’s emotionally hard for me, yet also hard to explain. Even though I had decided to leave willingly, I feel like fate is snipping every thread behind me to make sure I don’t look back. Winter is gone, and Luna is soon to follow, off to Newfoundland in four or five months time. Brandon feels soon he will move on from Barrie, also not beholden to a location since he works from home. I promised Julia I’d come back and visit, but it seems that with each passing day, there is less and less reason to. January 30th will come too slowly, yet suddenly fast and all at once, I know.

I put on “The Lost Boys” last night. My favourite movies are, in no particular order, Lost Boys, Streets of Fire, and Hellboy (the good one by Del Toro). Watching the immortal Lost Boys rev motorcycles up onto pedestrian walkways, carouse around fires and generally be ne’er-do-wells made me realize that I’ve always wanted that sort of life. I’ve always loved those movies, very much rooted in the 70’s and 80’s. I was musing before if I was an middle class girl dreaming of being a biker, or a biker trapped in a middle class life, and I now know it’s the latter. I’m not Star, trapped and fearful of David – I’m up front on my own bike, wooping with the hooligans. I always figured that the grass is greener on the other side, that everyone dreams for something different, and I’ll be eternally grateful to the Vagabond for giving me an opportunity to find out which I prefer. There are still some days I itch to just ignore the off-ramp at Duckworth and keep going. I’m going to be a pest once I’m in Thunder Bay and waiting impatiently for the weather to be good enough for motorcycles.

I’ve finished reading the Hells Angels book and started re-reading it to make sure I didn’t miss anything. It’s an old studying technique I can’t shake – skim first, in-depth read after. It struck me that Hunter Thompson and me both called marijuana ‘pot’, and the ‘outlaws’ call it ‘dope’, just as the Vagabond does. The more things change, the more they stay the same, no? A lot of the dialogue in this book I could easily imagine coming out of his mouth.

It’s a dangerous thing, reading the book and watching Lost Boys and being lost in daydreams, while I’m alone in the middle of the night. Rich has been indulging my new fascination with Hunter S Thompson with odd quotes and trivia and has hinted that there’s a book waiting for me. I’m sure if my mother ever reads this she’ll be disappointed I didn’t share her love of it while I was a teenager, but I like it better this way. I’ve come by it honestly, and it feels less like I’m chasing some childish dream and more that I’m discovering things about myself.

Cancer News

I went to visit my doctor for the last time on Friday. I slept through my alarm and arrived late. I can’t remember how late the office is usually open, but I arrived shortly before four. Most of the patients were gone and the receptionist had logged out of the computer.

They signed me in anyway, and within five minutes I was seated with my doctor.

He’s a funny guy. He looks super young – he’s gotta be in his late thirties by this point, but he looks younger than me. He’s always a bundle of energy – I say he flies rather than walks into rooms. We’ve always had a great deal of respect for each other. When I was first referred to him, the first thing he said to me was “I know that you know way more about your condition than I do, so I will defer to you for all decisions”. It’s the kind of respect not afforded to me by every doctor, especially with the number of armchair specialists and anti-vaxxers clogging up the airwaves.

He asked me all the usual questions as it’s around the time of my yearly check-up. Afterwards, sort of hopeful and offhanded, he mentioned that there’s been a new drug approved for desmoids. Nirogacestat, if you’re wondering. Less symptoms. Having a desmoid can now be easier and painless than having a flu.

He stood up to flee the room when I added that I had something else to tell him.

He sat down and I said I’m moving. It’s funny how Thunder Bay is the end of the Earth to Canadians. I could tell people I’m moving to Alberta or Nova Scotia and their reaction would be less intense, and Thunder Bay is still in Ontario! It’s the remoteness, I think. Thunder Bay has a reputation for being seedy, and in the middle of nowhere – both accurate.

He looked down at his feet as he processed it for a minute. We’ve been through a lot together. I always think in my head that I’m a few doctor’s signature patient, the one they mention over cocktails when someone asks for a story. Always with pity and wonderment, I know most think I got a particularly rough hand in a profession that is all rough hands.

He asked me if it was for a man, and I clarified it was for work. That’s one of many reasons I don’t mention the Vagabond to people I know personally. I decided to move to Thunder Bay before I met him – that’s why I was in Thunder Bay to meet him. The doctor then said that he would have me referred to the Thunder Bay Cancer Centre for follow-up, before shaking my hand and commenting that we may cross each other’s paths again. Then he flew out of the room, leaving me bewildered.

I stood around for a minute, before I heard him talking in the back and realized the appointment was concluded and I was expected to leave. The lights were off, the doors shut. There were no patients, nurses, or receptionists in the hallway.

So I walked out alone, sat down in my car, and called Rich before bursting into tears.

Rich did not make me feel better (sorry, Rich. I know we’ve discussed it and this is not news to you). When I mentioned the new cancer drug he suggested that we should have a drink to celebrate, but the jubilation just reminded me that the feelings I was having are not what I should have been having.

I should have been thankful. I am now one step closer to a simpler life, a life of less fear of the cancer recurring and permanently maiming me. A life with less disability and disease and pain.

I’ve saved lives. My treatment was a benchmark – volunteering as a guinea pig allowed them to save many other lives, and support those lives better. There are people who are alive because of me. There are people who’s treatment was easier, because I had already taught the doctors what to expect.

But in that moment, all I could see was my own pain, and the way it was reflected in my lonely walk out of the office. I lost years to cancer treatment – a year to surgery, two years to chemo. There was also the poor timing of the pandemic happening right after my chemo was finished. I was ready to go back to living, and it stalled again, so I view the pandemic as more years lost to cancer. Another two to the total.

This drug could have spared me that, but it didn’t exist.

There is also the way my parents treated and continued to treat my condition. It’s genetic, and I’ll go into it more in my post about it, but the fact is I refer to them having given it to me. I view my mother as selfish for having kids without thinking how this might affect them. But that opinion formed over time, from years of being abused.

The story that tells it best is thus: I had a friend in elementary school named Claire. I was eleven when I found out I had the condition, and my parents sat me down and made it explicitly, painfully, crying-at-the-dinner-table clear what was going to happen to me. I was in for a short, painful life, of being permanently maimed and scarred, of having things taken away from me (there’s some foods I will never eat again), of being stripped naked by doctors and nurses and having my dignity shredded by the same. Being carved up on a slab in a cold, white room, again and again and again, like some zombie that just can’t die.

But. I went over to Claire’s place and played happily with her, and I didn’t breathe a word of it. When my mother was talking to Claire’s mother before we left, my mother mentioned the bombshell. Claire’s mother was shocked and called Claire over to ask if she wanted to discuss it, but Claire had no idea what she was talking about, because I hadn’t mentioned it.

Because I was scared to.

It was a hard thing to unlearn. I remember people, even doctors and nurses, reacting with shock to my laissez-faire attitude about being fatally ill. When I told them my parents had informed me it wasn’t that bad and others had it worse, they corrected me.

Me and Rich have a saying – no one wins at the Pain Olympics. Some conditions can be objectively worse than others. I have no doubt some people have worse conditions than me, but by and large pain is personal and cannot be measured or compared. There are no winners, only degrees of losing.

My parents had drilled into my head that I was not allowed to be upset at any of this. It went beyond a stiff upper lip – I was to shrug and go about my day. I avoided mentioning my condition for a long time, for fear of being told I was making a big deal out of something that was small when it was, in fact, a big deal.

As I cried, head down on the steering wheel, trying to compose myself to drive home, all I heard was my father’s voice in my head. “You don’t have it that bad. And see? Now they have a new drug. Stop crying about it.”

I saw my mother screaming at me, demanding I keep the pregnancy I terminated. My beautiful, blue-eyed son, whom I could not condemn to the same level of agony. The guilt and shame I think she feels because she did not have the courage or forethought to make the same decision.

I cried because I knew I would never hear them say they were sorry for putting me through that.

I know there are people out there who detests abortions, because they are born handicapped. They’re angry at a world that is not equal, that does not spend the time or the money or the effort for them to live equal and dignified lives. I have respect for those people. I’ve walked in those shoes.

I don’t view myself in the same way because it’s cancer. I’m not short or clumsy or confined to a wheelchair or a little bit odd. My condition will always get worse, and it will always be painful. I don’t see any virtue in this unabated suffering, that will always been suffering, no matter how progressive or equal the world becomes.

The news that there was a new, better, drug just brought out all the pain I had buried inside me, the years I had lost, the time spent crying at the kitchen table as I was told I’m not good enough. The lonely walk through the hospital that mirrors my lonely walk through life. There are few people who have my condition, and those I know personally have mostly died by now. I don’t expect to see sixty. I don’t even know if I dare to hope that I might, because it will hurt that much more to have it wrenched away a second time.

One day I hope to be in a place where I can just be happy and thankful that there is a new drug.

But today wasn’t that day.