Scanxiety, or how I learned to stop worrying 4-6 weeks at a time

Chronic scanxiety - an intense form of cyclical anxiety experienced by people with a life-limiting illness whose disease is monitored through regularly scheduled medical imaging. 

ONE MONTH BEFORE SCAN 

I become more irritable and on-edge than usual (which is already a fair amount). My insomnia starts to resist the various combination of chemicals and activities I use to control it. My appetite, already precarious, begins to dwindle further. 

TWO WEEKS BEFORE SCAN

I spend most nights scribbling furiously in my journal, or endlessly re-writing angst-filled blog posts that sit in the "drafts" folder.  Sometimes, I can't put the words down. When I need to get them out, I pace my kitchen in the middle of the night, monologuing half-coherently to the universe. Despite running on a few hours of sleep, I wake up easily and can't fall back asleep. I scour the internet for hours, researching my various aches and symptoms "AND lung cancer progression". Shockingly, this does not help me sleep any better. 

WEEK OF SCAN 

At peak scanxiety, I am constantly dehydrated from random bouts of ugly crying. Whatever doesn't make me sad, makes me angry. I get mean. I struggle to communicate with others. It takes nearly all my cognitive energy to relate, let alone respond in the most superficial way. The simplest decisions become simultaneously insurmountable and pointless. My world has shrunk to one question only: is my treatment still working? 

THE DAY OF THE SCAN

It's a familiar process and I'm good at it. I know the best route to the hospitals, where to park, how to pay. No, I don't have any symptoms of COVID. Yes, I know where I'm going. I have my hospital outfit on (elastic waist pants and a tank top, with my ID and phone in the pocket of my hoodie) so that I don't have to change into a gown and the techs have easy access for the IV. It's partially to make life easier for them, and partially because being told "good job!" by the staff at the imaging department is one of my few sources of external validation. 

I'm nearly always in a good mood during the procedure. The first time, I even did some fancy eye shadow! Then I left the room and began to sob uncontrollably. Now I know to add an extra 30 minutes to my parking pass for crying time. 

1 WEEK AFTER THE SCAN

The radiologist looks at the scan within 24 hours. For reasons that are backwards and patient-traumatizing, I cannot get a copy of their report for two weeks. My personal, life-altering medical information sits on a server unread until someone at the Cancer Agency gets assigned my file and has the time to call me. Sometimes, I get an appointment time in advance. Sometimes, it's someone I've spoken with before. Either way, it's usually within the week. I distract myself with television and drugs.

SCAN RESULTS - SO FAR

Arts and crafts help keep me busy!

The past four cycles, I've been told my scan "looks good". The same backwards and patient-traumatizing reasons mean that I do not get a copy of the report during the conversation with the doctor, so I try to get them to read the exact words to me. They DO NOT like this. So I usually have to settle for an oncologist's interpretation of a radiologist's interpretation of a machine's interpretation of what's going on in my body, which is a little too "broken telephone" for my peace of mind. 

2 WEEKS AFTER THE SCAN

I download a copy of the report from the patient portal. I read through, researching the unfamiliar terms as I go. Subpleural fibrosis. Ground glass opacity. Mediastinal clips. Apical fibrotic change. Parametrial varices. 

I compare to previous reports, and note the differences. More research - can these be explained by the scans being done on different machines? Different positioning? How well the contrast circulated through my veins? Different radiologists using different terms to refer to the same thing? Different radiologists having different views on what is worth reporting on? 

At this point, I usually have my monthly check-in/prescription renewal appointment with the Cancer Agency. I'm supposed to talk about my treatment-related symptoms. But I sneak in questions about my scan, too. I ask them until they placate me back into the land of a somewhat functioning person. The tightness in my chest unwinds and I am filled with gratitude for the beauty of life. I reach out to loved ones, laugh sincerely, eat heartily, cry daintily. 

The cycle begins anew. 

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.