When Hope Becomes Hopium

TL;DR: I have cancer again and maybe for the rest of my life but maybe not IDK.  

Something I learned very early in a non-small cell lung cancer diagnosis is that, while they may stage you according to a 9-step classification system, and type you according to dozens of genomic differences, there is ultimately a single dividing line that medicine uses to group all cancer patients into a simple binary: Can we cure them? 

(Cure rates in lung cancer are comparatively low. Abysmally low. Terrifyingly low. Almost 80% of NSCLC patients die from their disease within 5 years (compared to around 10% of breast and prostate cancer patients).  (Insert mandatory disclaimer about the usage of statistics to predict individual outcomes, and related blog post here.))

For many institutions, this is also informally expressed as "Can we cut it all out?"  aka "surgical resection".  The gold standard, despite its relatively high failure rate in lung cancer, and only available to the minority of patients who are diagnosed when the cancer is still contained within one lung and maybe some nearby lymph nodes. Beyond that, you're into systemic, "metastatic" disease. The dam has burst. Containment has failed. Any part of your body could be harbouring a mutant, murderous fugitive cell. We'll treat you, sure, but it's only a matter of time before one of them gets you. 

So my diagnosis (first at 2b, then 3a by the time treatment actually started) was delivered with a message of hope: I was a candidate for a cure. It would mean aggressive treatment. I gave over eight months of my life to being poisoned, irradiated, chopped up, poisoned again. And as treatment took its toll and I rapidly lost parts of my old identity - as a professional, an active parent, an athlete, a performer, a volunteer, a willing doer-of-things - I clung to this new one. I'm a SURVIVOR. I can be CURED. Inject that hope straight into my vein with the cytotoxic medication. 

Then I found out, partway through the adjuvant (post-surgical) chemo that could have potentially given me an additional 5% overall survival benefit, and definitely gave me permanent hearing loss and nerve damage, that there was another spot on what remained of my right lung. 

I know it's a terribly overused trope to say "I heard someone screaming. Then I realized...it was me!" I mean, I knew it was me the whole time, and it was not so much a scream as something that started silent then guttural, low in my belly, before it finally crawled out of my throat as a slow groan that ended in a wail. It was the sound of futility, of helplessness, of despair. I did everything they asked. I willingly threw everything to be burnt on the altar of "a cure" - my employability, my quality of life, my ability to confidently stray more than 50 feet from a washroom. I gave them every pound of flesh they requested. And it wasn't enough.

Or was it? More hope:

Lung nodules are common. This one's small. Too small to biopsy. Could be inflammation. Could be scar tissues. But if we say you're stage 4, you get access to more treatment. 

Not as invasive this time. A pill, once a day, that costs more than I like to publicly admit. Side effects, sure, but nothing like what I'd been through. Blood tests every couple of months, quarterly scans of my chest, every six months of my brain. If I made it through three years on this pill with no further activity, I could come potentially come off treatment. Back on Team Curable, baby. 

At the 18-month mark, my oncologist gave me an update. If it was cancer, the doctor explained, they would have expected it to have done something by now. We're downstaging you. Stage 3a resected. Welcome back to the team, we're increasing your dosage of hope, bet that feels good after all this time, eh?

I went wild, middle-aged mom-style. I browsed jobs. I upped my rehab goals. I looked at retraining and pre-ordered some textbooks. We planned our first family vacation in years. I bought pants that fit. I went into my June scan with considerably less anxiety than ever before.

If it isn't obvious where this is going by now, you haven't consumed enough popular media.

For 6 scans, that nodule hadn't done much. Stuck around, in a sucky, stucky way. But that 7th scan, apparently, it decided to make a move. Nothing too big, nothing too obvious. Just a little bit more solid than before. These things can change. It's minor. Still too small to biopsy. A PET scan, just to be sure. This type of scan measures metabolic activity through the uptake of radioactive glucose, and is partly responsible for the myth that cancer feeds off sugar (all cells feed off sugar, cancer is just hungrier). 

I left three messages with the oncologists' office asking when I would hear my results. As part of the vast organizational conspiracy by the administrative staff of the Cancer Agency to completely destroy my mental wellbeing*, not one of these messages made it to an oncologist. The doctor who finally called me fully believed that I already knew. Oh gosh, nobody told you that you'd been kicked off the team again? 

Or was I?

See, there's this hot new concept of "oligometastatic" disease which I'll help you Google but basically

means that there could be a step between local and systemic disease. Sometimes a disease comes back in just a couple spots. Sometimes the cat is only partway out of the bag - just a paw, maybe two - and by jove, in those cases, with the right touch of a new kind of radiation therapy, they can sometimes get the cat back in. 

Peace, love and targeted radiation.

So there I was, new treatment plan in hand, down the rabbit hole of research papers to try to figure out which team I was on. This study looked at people who had multiple tumours at once. This one used a different pattern of radiation. This one excluded people who had been treated with chemotherapy. 

And the more I read, the more I flipped between totally calm and uncontrollably frantic, until I eventually recognized that not only is the in/curable binary useless, but that it also conflated "cure" with "hope"...which was even worse. 

When "hope" means "cure", incurable patients are expected to throw hope away. Now it's a false hope, so-called hopium, right up there with strict diets and special crystals and that one podcast omg you have to listen to it he beat cancer with just mindfulness and a stick. 

I may let them poison me. I may let them irradiate me. I may let them cut me open and poison me some more...but I sure as heck am not going to let them tell me what to feel, goshdarnit it all. 

So I'm trying not to focus on which side of the line I'm on, or which team will have me. I'm trying to spread my hope around. Maybe for a cure, sure, but also: to be able to live a day at a time in a culture that expects long-term, predictable commitment; to understand and accept the limits on my life while changing what I can; to identify and live according to my truest values, so that when my time comes, as it does for every living thing, the pile of regrets is overshadowed by the tower of, if not joy, then at least contentment. 

And maybe, just maybe, for one more pair of pants that fit. 

*Okay, less of a conspiracy, and more of a complete ambivalence towards implementing functional internal communications systems and processes, which is SUPER DUPER FUN for someone who studied this topic at a graduate level and worked on such systems professionally for over a decade and will be over here making slow guttural wails into the void for the rest of her statistically shortened lifespan. 

Can't Spell "Gratitude" without "Attitude" or something IDK

No trigger warnings for this one, unless you are triggered by raw, unfiltered sappiness. 

I know that mostly I use this blog as an outlet for my fears and complaints, but heck! I am feeling good today. I've actually been feeling good for a couple of weeks, which is a long stretch for me, and instead of feeling despair that the rug is going to get pulled out under me, I'm going to just bask in the glow of goodness as long as I can, understanding that everything is temporary and life is what you make of it and something about lemons and lemonades. Can't spell "gratitude" without "platitude" or something else.

Wow - I really do not know how to write a positive intro. I AM OUT OF PRACTICE, PEOPLE. 

My point, if I have one, is that this whole "feeling good" thing has created a really cool space for me to feel gratitude. It's something I've tried to do the whole time on this journey, and I often managed it in bits and spurts, but now it's been happening for hours a day and it is just the most wonderful feeling to be able to sit and bask in the love that so many have shown me and my family since my diagnosis.

The people who brought meals. Who sent care packages. Who helped with yardwork and housework. I APPRECIATE YOU.

The people who sent messages. Who shared recommendations for entertainment and education. Who sent memes and adorable photos of pets and kids. I APPRECIATE YOU.

The people who touched base. Who sent word through mutual friends of their thoughts and best wishes. Who didn't know what to say but didn't hold that against me. I APPRECIATE YOU.

The people who offered a listening ear, a helping hand, a friendly voice. I APPRECIATE YOU. 

The people who have braved open mic nights to support my comedy/advocacy. The people reading my blog. The people leaving comments on my posts.  I APPRECIATE YOU. 

Cancer is a lonely thing. But y'all made it a little less lonely. And while I didn't always have it in me to say it at the time, or even to truly feel it, know that I am really, sincerely, wholly grateful. 

Cancer took a lot from me. But so many people have given me so much back. And while it's easier (and funnier) to complain, and I can tend to be a "the glass is half full and maybe it's POISON" type of person, all these acts of love can make even the grinchiest of hearts grow. 

Actual picture of me while writing this post. 

What little difference a year makes

At this time two years ago, I was sitting in Chair 18 at the Cancer Centre, starting the first of my four infusions for that day - saline, then Cisplatin, then Benadryl (yes, that Benadryl, because it turns out you can be allergic to chemotherapy) then Etoposide. The whole process took just over four hours, unlike the radiation treatment I'd had an hour earlier, which takes about 10 minutes, most of which is positioning and repositioning my body until my three tiny little tattoos lined up properly with the Giant Death Ray Machine. 

This is your hand on chemo. Well, *my*
hand, technically. 

At this point, my team was still discussing my future - when we'd know if the treatment was successful (May), when I might be able to get back to work (also May), when I would be done with this whole "cancer" thing (...you guessed it - May!) Treatment was going to be rough, and although I didn't yet know just how rough, I knew what I had to do: get through the suck, get on with my life. 

At this time one year ago, I'd had a lot more cancer treatment than originally planned. Twice the amount of lung removed, twice the amount of chemo. A daily pill I'd been taking for 5 months which, while not chemo-levels of suck, worsened my fatigue, killed my appetite and kept the makers of Immodium rolling in dough. But all I had to do now was buckle down - manage my symptoms, get on an exercise program, up my protein intake. Get through the suck, get on with my life.

So it's hard not to be demoralized when a year later, I appear to be no further through the suck, no closer to getting on with my life.

It's a weird place to be in. I'm grateful to be alive, and I'm angry to be alive in this condition. I feel betrayed by the medical system that saved my life, given false hope which I then passed on to people around me. If you're wondering why I'm not back at work, or soccer, or stand-up, well, guess what? I am too. In all my many conversations with all my many doctors, my options were always "either we'll cure you or...the other thing" (doctors, like most people, suck at talking about dying). "You might live for several years with a vastly reduced quality of life" never came up. And now that I'm here, it's like I'm off the map for health care providers. Here there be monsters aka people who don't fit into the boxes on the requisition forms. 

It's a failure - systemically, to meet the needs of patients; individually, by doctors and others in the profession who lack curiosity and imagination - but it's hard not to internalize that failure. Did I not do enough, prepare enough, try hard enough? 

Maybe if I really, really, really wanted to, I could get off this couch, make a kale and tofu scramble, practice mindfulness and yoga my way back to who I was before. 

Maybe if I really, really, really tried, I could stop being such a Whiny McWhinerson when there's war and famine and people who are not me dying of cancer, and do something meaningful with whatever time and energy I have. 

Maybe if I really, really, really, worked at it, I could come up with a profound, witty and thematically pleasing conclusion to another rambling blog post.

But I can definitely wrap things up here to finish my now lukewarm oatmeal and the last 40 minutes of Antoine Fuqua's 2016 remake of The Magnificent Seven with Denzel and Worst Chris. So that's what I'm going to do. 

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.

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