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?)