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.