I get knocked down. Then I get knocked down again.

This time last year, I had just started my final chemo treatments. I was a veteran at that point, bald and bold and handling it like a champ. 

This time last year, the worst was about to behind me.

This time last year, I knew that recovery wasn't going to be a straight line. I knew there would be ups and downs, progress and setbacks. I knew that cancer treatment had put my body through hell, a calculated war of attrition where healthy cells are inevitable collateral damage. I knew it would be hard, that I would never get back to where I was, that it would require patience, resilience and managed expectations. I knew all this, little know-it-all that I am and have always been.

This time last year, I was ignorant as fuck.

I didn't know that every time I felt stronger or healthier, something would knock me on my ass. That I would go from doing 10,000 steps one day, to barely being able to get out of bed another. That my appetite would be robust then non-existent. That I would go from desperately seeking out human interaction, to equally desperately avoiding it. 

I didn't know that I would essentially be abandoned during my recovery, left to try and cobble together a plan from a scattering of academic and privately funded programs. I didn't know how angry and resentful I would feel towards the healthcare system that subjected me to life-altering treatments and then all but washed their hands of the consequences, leaving me to beg, cry and Karen my way to get any sort of assistance during the worst physical health of my life. 

Maybe that's hyperbole. Maybe it was worse when there was actual poison running through my veins. But at least then, I knew what was making me sick. I had a medical team at my finger tips, checking in with me, advising on what's normal and adjusting medications where they could. This time last year, during my my final cycle of chemo, I actual gained weight. (This was a huge win; after my first round,  I had dropped dangerously close to "too scrawny for treatment". Nobody likes a skinny chemo patient - like I said, it's a war of attrition).

The setbacks are frustratingly predictable. Of course I'm weaker than I was before being poisoned, radiated, chopped open, vital organs removed. Of course this miracle-life saving drug has severe side effects that come and go in duration and intensity. Of course treatment has irreparably damaged my heart, my breathing, my digestion, my mobility, my cognition.  Of course this whole thing has left me with grief, trauma, stress, anxiety, depression.  Doctor after doctor glances over my increasingly thick medical history before spending most of our few minutes together explaining why they can't help me. Wow, of course you're not feeling well. Here's why that's not my problem. 

I was raised in a family, in a culture that values productivity. What have you done today? What do you do? What are your achievements? What are your skills, your strengths, your abilities? For those few weeks where I have energy, where I can eat, interact, perform a convincing facsimile of "normal", it's glorious. Floyd's back, baby, better than ever. 

But those moments don't last, and the cost is high. Time and time again over this past year, my body will suddenly, thoroughly betray me, balking at the simplest activities. Changing my clothes, drinking an entire Boost (and keeping it down), walking around the block - these are my big achievements for the day. What did you do today? Gosh, I performed some of the basic tasks of personal hygiene and care. I didn't vomit, even though I felt like it all day. I only cried twice. An hour. 

In these periods, I have the sensation of not just failure, but non-existence. Who am I if I can't do anything? It's something beyond depression, whose intricacies are as familiar to me as the lines on my own face. It's an erasure that I cannot name, an un-doing, an un-becoming. I don't know who I am. I get messages of care from people I consider loved ones, but I feel unqualified to respond, an impostor. Sorry, the Floyd you know and love isn't here right now, please leave a message and she'll get back to you as soon as she exists again. 

It's hard on the bad days to reminisce about the good ones. The worst are the days where I wonder whether the good ones are all behind me.  

It's also hard reading the endless stories of crisis in our health care and social systems, the increasing number who have slipped through the cracks, lives lost to institutions lead by those who value efficiency and cost-savings and privacy and bureaucracy over people. 

It's a scary time to be sick, people. A terrifying time to be on the margins of society. So many of us are one "getting knocked down" from not getting back up again. If you can, if you have any bandwidth, any room, to advocate for us, to speak up and take action and help out the marginalized - now is the time. You might not be able to pick me up, but you can help repair a safety net that has been systematically shredded over decades of greedy and self-interested policies that blame the misfortunate for their tragedies and reward the successful for their avarice. 

Because nobody - nobody - stays healthy forever. 

Floyd's Gauntlet or How I Learned to Keep Worrying But Make Decisions Anyway

Author's note: I originally wrote this post in June 2021, when I had completed the course of treatment originally proposed for my cancer (aggressive chemoradiation and surgery). It never got published because the cancer rollercoaster took an unexpected turn before I could complete it. So here it is now, with some updates towards the end. PS. I *love asterisks*

******

The treatments went well. My body is healing. There is no evidence of disease. Now what?

I have always hated decision making. I am a chronic second-guesser, a "what-if"-er of the highest degree. Woulda-coulda-shoulda by nature as long as I can remember. And that way? Lies madness. (Or more specifically, clinical depression.) It's very, very rare that I ever have enough certainty, enough information, to know know that I'm making the right decision. 

Fortunately, I have had a few decades of trial and error, and error, and more error, to work on my decision-making system, which is sort of a combination between Pascal's Wager and a clip from an old Japanese game show, both of which I learned of during some pretty formative years.

The first major influence is pretty mainstream. My introduction to Pascal's Wager was in a 3rd-year Philosophy of Religion class.* I've forgotten most of the names and ideas, but Mr. Pascal's always stuck with me with its elegant, fearful symmetry:

	Believe God Exists	Believe God Doesn’t Exist
God Actually Exists	Yay! Heaven!	Uh oh! Hell!
God Actually Doesn’t Exist	Can’t feel crushing disappointment when you’re dead.	Can’t feel ultimate vindication when you’re dead.

Without getting into my opinions on its validity in a multi-denominational world**, this is still a dry, intellectual exercise that doesn't really get into what it means to make a decision and live with it. It doesn't account for the odds, how to improve them or mitigate harms, or even how to decide when to make a decision. 

So I like to combine Pascal's Wager with That Show Where People Run at a Door Without Knowing if it's Made of Wood or Paper, which was shown to me on one of those special days  in school that only People of a Certain Age will remember - the Day the TV Gets Rolled Into the Classroom. 

Now when I'm faced with a big decision, I run it through Floyd's Gauntlet. I figure out what's at stake, how many walls are between me and a good outcome, what are the odds I get through them, if I can live with being wrong, and when I have to decide. I imagine putting on my metaphorical helmet and running towards an allegorical door, and dealing with the hypothetical outcomes.

I've used it pretty successfully for some major life decisions (Should I have a child? Should I go back to law school at 35? Should I watch a new movie, or Tremors again?)***

And most recently - should I live like my cancer is cured?  

I'm a few weeks into my PLTC course (part of the requirement to become a lawyer in B.C.) which takes about about 110% percent of my productive capacity. Is this a good use of my life? Should I be pursuing 17-year-old Floyd's dream, carrying on as if this was just a highly unpleasant detour on the road? 

Using just ol' Blaise's framework, I came up with this:

	Believe Cancer is Cured	Believe Cancer isn’t Cured
Cancer is Actually Cured	Yay! I was right!	Yay! I was wrong!
Cancer is Not Actually Cured	F*CK ME	At least I’m prepared!

The answer seemed obvious. Hope for the best, prepare for the worst! Live like you're dying, carpe diem, mindfulness and kale and whiskers on kittens. 

And then I started imagining what the gauntlet would look like. It was hard, because lung cancer is chronically underfunded and understudied, so statistics around survival are often too broad or outdated to be useful. 

The generally accepted number is that 1 in 3 people survive 5 years after a stage 3a lung cancer diagnosis. 

There's a wall in front of me. It has three doors. One door is made of paper. Two doors are made of wood.

But my odds were better. I was relatively young and healthy, able to access and tolerate aggressive treatment, which had seemingly gone well. Maybe my odds were as good as someone who had been diagnosed at stage 1.

The wall has 10 doors. Nine of them are made of paper. 

Or maybe it's like that one study that most closely matched my circumstances.

Five of them are made of paper. 

Then my oncologist called to let me know that my treatment had been so successful that I no longer qualified for the "miracle drug" that had changed the face of treatment for my type of lung cancer. 

She suggested another two rounds of chemo. It had a proven 5% increase in 5 year survival.

There are 20 doors. 11 of them are made of paper.

*****

That's as far as I got in June. Because as I was writing it out...I kinda had a teeny-weeny, complete emotional breakdown. I've cried a lot in my life - happiness, sadness, frustration, embarrassment, forgetting to wash my hands after cutting jalapenos and then going to the bathroom - but tears of terror are in a class of their own. And I was sitting there, writing this blog post, and the understanding was slowly sinking in that behind the paper door was the future with everything I wanted (watching my child grow up, a rewarding career, supporting my family and friends, making the world a better place, recording my album of accordion covers of eighties music, etc.) And the fake doors weren't made of wood, but of a slow and painful death by cancer. 

I packed up my binders of legal materials and wrote to my supervisor, the Law Society, my PLTC instructor. Not right now, I said. Just a little more treatment. Just to be safe. 

Partway through chemo, another twist in the rollercoaster - the mystery spot on my lung. Maybe it's cancer, maybe it's an infection, maybe it's Maybelline. Too small to biopsy, too big to ignore. I am, on paper if not in reality, stage four. And the thing about stage four is, eventually, there is only the wall. There are no doors. 

******

*This course also culminated in what is probably my favourite final exam question of all time, "Is it possible to believe in God?", on which I enthusiastically handwrote several pages and hope to type a slightly shorter blog post at some point. (My answer, by the way, was "No".)

**Which God? "Believe" how? What if actions and not belief are what matters to God? HOW CAN YOU POSSIBLY KNOW?!?! 

***Yes, yes, and, at least once a year, Tremors, because that movie is FLAWLESS.

What a difference a year makes

 Prologue

Fall 2020

CT scan: Hey, look, there's something funny in your brain. It's probably cancer.

MRI scan: Lol, jk. 

Summer 2021

CT scan: That thing is still there, only now it's slightly bigger!

MRI scan: Nope. Not even a single spider egg. 

"Happy" "Cancerversary" to "Me"

One year ago today, I came very very close to not going to the hospital. My heart rate and blood pressure had been up for a week, despite my best efforts to bring them down, but there were no other real symptoms of cardiac problems. When my doctor suggested I go to the ER just to get checked out, I had a dozen reasons not to. The labs would be open again tomorrow morning. It was my turn to pick up kiddo from after-school. There was a pandemic going on; the ER was probably full; I really, most likely, probably wasn't having a heart attack. I would have to go home and get the car; or carry the battery from my ebike around with me. 

I don't know what exactly made me decide to ride over to the hospital after all. Maybe subconsciously I knew something had been wrong for a while. I had spent the last few months begging off of my various non-work responsibilities, from volunteering to soccer to social events, too exhausted at the end of the day to do much of anything. I was napping more frequently, and less intentionally - I would sit down on the couch and wake up three hours later. I got out of breath walking uphill to our house. (It's uphill in every direction, which is great for tsunami-survival purposes, but not so much for mobility-limiting ones). 

That was me B.C. - Before Cancer. (Or, more accurately, Before the Cancer Was Found, but BtCWF doesn't quite roll off the keyboard the same way). 

And here I am now, starting year 2 A.C. I thought it would be easy to write this post, but I am often wrong about which things will be easy and which will be hard and this proved no exception. So much has changed - and yet so much is the same. I'm healthier (in the "having less, and maybe even no, cancer in my body" sense) but also less healthy (in the: "jogged 100m and needed a 5-hour nap the next day" sense, as well as the "chemo-induced tinnitus seems permanent this time" and the always pleasant, "better buy stock in the company that makes Imodium" sense). 

I still spend a lot of time online, but very differently than before. I've read more scientific journals in the past year than I have in my entire life (which isn't entirely surprising for an Arts major who hadn't studied science since the previous millennium). An unexpected side effect of the whole process has been an increase in respect/empathy for medical professionals, and a decrease in the trust I put in the information I receive from them. The prologue at the top of this page is just one example of the conflicting and unreliable results that medical testing produces, even before they're run through the inherent biases and predispositions of the individuals who interpret them. 

When I'm not reading the latest research or attending virtual cancer conferences, I do still go on social media quite a bit - but my feed is mostly filled with posts from strangers with whom I share the unfortunate and sadly comforting bond of this disease. When I'm up to it, I binge on my friends' posts, to revel in their joys, successes, travels, achievements, or empathize with their losses and disappointments. (Usually I need another nap after that.)

My to-do list keeps growing, as does my sense of dread of how much might be left undone (especially during those insomniac nights.) Most of it has to do with getting some sense of order back into my life; of tying up loose ends and sorting through the clutter.  But, pop quiz, hotshot - how do you determine what's useful and what's clutter when you don't know your own capabilities or approximate life expectancy anymore? Answer: With great f*cking difficulty. 

Epilogue

How do you walk when just to have to wheeze?

How do you talk when you can't trust a sneeze?

How to respond when your brain seems to freeze?

WITH GREAT F*CKING DIFFICULTY

How do you sleep when your ears start to ring?

How do you eat when you don't want a thing?

How do you live when, Jon Snow, you know nothing? 

WITH GREAT F*CKING DIFFICULTY

I'm okay (except for when I'm not)

After 8 months of treatment, including 6 weeks of chemoradition, a open thoracotomy removing 2/3 of my lung, another 6 weeks of chemo thrown in because hair is for suckers, and a targeted therapy that is as potentially miraculous as it is expensive, I am currently living with Schrodinger's Cancer. My last two scans showed two small but "suspicious" spots - one in my remaining lobe and one in my brain. 

There's a concept in Canadian criminal law of a "reasonable suspicion", a standard that's meant to keep police from exercising their formidable powers all willy-nilly and has clearly been a success in every way and HEY LOOK OVER THERE

There's a similar concept in healthcare. As one can imagine, the patient's idea of "reasonable suspicion" is often much broader because we're a teeny-tiny bit more invested what with the life-being-at-stake thing. "Rare", "unlikely", "improbable" - these are nonsense words to me now. 30,000 Canadians get diagnosed with lung cancer every year, and all but 600 of them are over the age of 50. Do not tell me the odds. 

And so my first instinct is that the word "suspicious" is suspicion enough. I want the full-scale response. I want the cancer swat team all over again and I want them to do their job properly this time because goddammit I did not go through all that for nothing!

But the oncologists, who actually do this for what I hope is a very good living, want more evidence before subjecting me to more "all that"  because I am still recovering from the previous rounds of "all that" and it would be both a waste of resources and pretty damn harmful to the patient to do "all that" when those spots could just be inflammation or blood vessels or scarring or spider eggs. ("Please, let it be spider eggs in my brain" has got to be near the top of the list of Things-Floyd-Thought-She'd-Never-Say). 

So I try to get through each day, waiting for the next scan, the next test. I sleep more. I cry a lot. I take a lot of pills for a lot of reasons. I spend hours online, gathering my own evidence: reading medical journals, attending virtual conferences, connecting with other patients through social media, trying to figure out whether I should be planning my life in months, years or decades. 

Motivational Poster for Cancer Cells

And the longer I live with this, the more I'm coming to understand that it is always Schrodinger's Cancer. There will always be a "next scan" as long as I'm alive.

Because that cancer, it is crafty. It can hide and hibernate. It can deke and dip and dodge whatever gets thrown at it: toxic chemotherapy, T-cells pumped up by immunotherapy, therapies targeted to its specific genetic makeup, razor sharp scalpels that take healthy tissue along with the malignant.  

It is endlessly malleable, relentlessly innovative, and ultimately self-defeating because, do you not understand that if I die, you die too? Huh? Didja think about that, smarty-cells? DIDJA?!?#$&%

And it's why no question stops me in my tracks faster than "How are you?" Because I am Schrodinger's Cancer Patient: I am healing; I am dying. I am cured; I am terminal. I should take up new hobbies; I should give away my belongings. I should make plans with friends; I should make funeral plans. 

I'm okay, except for when I'm not. 

How to Tell Someone They Have Cancer: Medical Professional Edition

• ER Doctor 1: Inform patient that all heart-related testing came back fine, but that the chest X-ray showed a "fuzzy spot" on the lung. Advise patient not to jump to worst-case scenario, and laugh politely at her joke ("Alien spores?"). Explain that it is most likely pneumonia, and if a CT scan confirms this, her colleague on the next shift will send said patient home with some antibiotics.  
• ER Nurse 1: let the youngish-woman pacing the now-empty waiting room know that the doctor is just waiting for the results of the CT scan. Realize that they have, in fact, come in. Lose all ability to make eye contact with said patient for the next hour, until it is time to bring her in to meet the doctor. Come out behind the barrier (which you have not done for the past 4 hours) and personally escort her, with a heartbreaking look of compassion, to a small, windowless room filled with couches and Kleenex boxes.  
• ER Doctor 2: Introduce yourself. Apologize (and feel secretly, if not understandably, upset) that you, and not the doctor who had originally been overseeing her care, is here to discuss the results of the tests. Repeatedly ask if the patient would like to have someone with her to hear the news. Eventually accept that your persistence in this matter is only making things worse. Explain that this is the worst part of the job.  Inform patient that the CT scan showed a mass that was "indicative of malignancy." Refuse under all circumstances to use the word "cancer", despite the patient's best efforts to trick you into this, such as by asking sneaky questions like, "Does that mean I have cancer?" Explain that this can only be confirmed with further tests, which are all being arranged. Offer Kleenex. Take some for yourself. 
• ER Nurse 2: Arrange midnight taxi home for patient. Personally escort her to the door. Attempt to cheer her up by informing her of the latest news that Donald Trump has tested positive for Covid-19. 
• Floyd's Uncle who is a Radiologist and also German and lives up to the stereotypical directness of his naionality: Read Canadian radiologists report. Tell niece that yes, it is most likely cancer. 

Tell Me, Tell Me, Tell Me the Answer

Back in the early aughts, yours truly donned the patented blue polyester uniform of a Parliamentary Tour Guide. The job combined two of my finest qualities: the ability to spend hours explaining things I find interesting to a captive audience, and being right about everything, all the time. 

There would, of course, often be that one person who wanted to play "stump the tour guide" by asking the most random, specific question they could think of such as:

1. What is the weight of the building? 
2. Who was the first person to enter the building using the tunnel from the East Block?
3. How many doorknobs are there?

There may be a better feeling than putting some smug troll in his place by instantly responding, but young Floyd had to yet to experience it. The smugness would slowly change to confusion as I rattled off the answers without hesitation: Approximately 33,000 metric tonnes when vacant! The legislative assistant to then-Fisheries Minister Brian Tobin! 1,464, including yourself!  

I'm proud to say that in all my years of tour guiding, not a single one of these jackasses stumped me, by which I mean that no one was able to make up a question so asinine, so nonsensical, so blatantly in bad faith that I could not instantly respond, thanks to another two of my fine qualities: the ability to make shit up on the spot, and deliver it with confidence. 

It's not that I couldn't say "I don't know". I could, and did, when there were genuine questions because, much to my continued chagrin, I did not and still do not know everything about everything. But sometimes, sometimes, "I don't know" is too hard to say. 

Not just when my trivial intellectual supremacy is at stake, though. Sometimes it's too hard to say because it's upsetting to the person asking the question. Sometimes, the question isn't an inane, useless waste of time, but a sincere expression of real, meaningful interest. Sometimes, the question is "Is it terminal cancer?". Not always in those words, but it's there. I care about you, friend/wife/mother/daughter/sister/loved one. Is this going to kill you? How can I help prevent that?

And I hate hate hate not knowing that answer. But I can't just make something up. Not just because Google is a thing now and even the smuggiest smugs who ever smugged can bring a mobile encyclopedia to a battle of wits.  In this case, there are ACTUAL CONSEQUENCES to getting it wrong, in the form of causing pain to people I care about deeply, which is not at all satisfying as compared to, say, telling some doofus, with authority and a straight face, that the person who first defecated inside the House of Commons was prime minister/architect of genocide Sir John A. MacDonald.

And there is absolutely nothing I can do about that. I don't know the answer because nobody knows the answer. Cancer is a wily beast, and statistics, though eminently valuable at a population level, are about as helpful to an individual as a fart during Question Period. (Hell, as an answer during Question Period).  But at this point, that's all I have. I know that 1 in 3 people with my diagnosis survive more than five years. I know that my gender and age bestow a small but significant statistical advantage—as do the unfair privileges attached to my race, class, education level, proximity to a treatment centre, otherwise good health history and lack of visible disabilities. 

I also know that I am fortunate to not have to worry about being bankrupted by treatment, and to have loving friends and family who can support me, a job that has been flexible and understanding, and an incredible team of medical professionals and staff dedicated to my care. 

But I don't know if that's enough. And only time will tell. 

Time, with all its elusive power, forever out of mortal grasp, but that we nonetheless try to capture in our own ways...

...such as the Parliament's iconic Peace Tower clock, home to an impressive 53-bell, 4 1/2 octave carillon. What's that? Why yes, I do know which single song required the use of the most bells, sir. It was an impromptu concert by an aspiring carilloner who snuck away mid-tour and made it nearly through the entirety of Bohemian Rhapsody, until he was stopped mid-mamma mia! by a veteran security guard from Penetanguishine, who forced her way into the room using only Lester B. Pearson's antique spittoon and, per protocol, sternly rebuked the scoundrel for ignoring Canadian content laws. 

(Yup. Still got it.)

How to Tell People You Have Cancer

There must be 50 ways to leave your loved ones stunned with the news that you are a 39-year-old with stage 3a lung cancer, but these are the ones I've tried:

1. Invite them over for dinner, after determining whether the tears of your parents pair better with the appetizers or dessert. 
2. Call them up out of the blue. Make small talk until the subject arises organically, which it will,  because, well, 2020 ("hey, speaking of that crappy things that happened recently...")
3. Lurk on the group chat for weeks. Wait for the right moment to drop the bomb. Follow-up with cute animal memes in a desperate attempt to lighten the mood. 
4. Stare at their contact information. Compose text. Delete. Compose. Delete. Compose. Sen--nope, delete. Compose. Open Reddit "just for a minute". Hit send 17 hours later. 
5. Procrastinate until your mom/husband does it for you. 
6. Revive your ancient blog. Get frustrated at new interface. Browse through old posts for hits and giggles. Get mad about that Punisher movie again. Debate whether to remove  ignorant language and opinions or leave them as a reminder of the importance of self-improvement and growth. Feel smug. Start doing creative writing for the first time in almost a decade. Feel less smug. 

In some ways, it does get easier - you get used to the basic reactions. People are sad, and they want to help, and suddenly the lasagnas are multiplying in your little freezer like some sort of pasta-based family of rabbits, for which you are both very, very grateful and very, very constipated. 

But in other ways, it gets harder, like that one week 20 years ago that I worked giving surveys over the phone, and would look at the list on my computer screen and think "Do I really have to go through this script again?", only worse because not quite as many people cry when you tell them you are calling about their opinions on Paul Martin's leadership qualities. 

It's the most awkward with the good friends that I haven't spoken to for a while. Whether we bonded over our mutual love of rugby, relentless pursuit of higher education, or searing disdain for <insert name of power-tripping narcissistic boss here>,  I've been meaning to call you for ages. I've wanted to reach out and see how life was going, and I never got around to it and now there's this golfball-sized mass of malignant cells hanging over the whole thing. Hi dear friend, been thinking about you lots, also I have cancer, and how are you? 

So if you are in category 6 right now, please know it's only because I feel I missed my window of non-awkward contact. (And hey, your existence has also got me blogging again...so, thanks!)( And, you're welcome?)