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Leveling the field

Trigger warning: I do talk about my prognosis, death, and dying. If that’s not something you’re in the headspace to take in, stop reading at “A reality check.”

I’ve been spending a lot of time lately in a state of worry.

Worry. It’s an amalgam of some of the most uncomfortable emotions. Fear, anxiety, and despair conjoin into an indistinct and irrational state of mind.

It’s the Taco Bell of emotions. It fills a void where the emptiness itself is uncomfortable.

There’s no logic behind it. It just kind of is.

Live más.

Live more. More mindfully, joyfully, and purposefully.

At least, when your self-talk isn’t telling you your solution to worry should be to curl up in the fetal position under a heated throw to play video games for an embarrassing amount of time.

One more trip around the sun

I’d experienced some trepidation heading into my thirty-sixth birthday over the weekend.

In the days leading up to my party—which was a private get together at a local craft cider place—I couldn’t help but feel my emotions brushing up against each other.

I’ll start with the good.

Nothing brings me as much joy as spending time with my friends and family. It’s such a remarkable thing for people to come together in honour of someone they care about, reminiscing, joking around, and swapping stories.

We can all appreciate the awkwardness and hilarity that takes place when twenty-five people from different areas of life get into a room together. Add in the layer of the person being celebrated having advanced colon cancer and the party becomes something else.

We laughed and cried. We all drank a little too much alcoholic cider. I received gifts. It was a great time. I’m grateful to have shared it with my people. I’m equally grateful that my actual birthday fell on a Saturday this year.

This all sounds great, right?

It was.

The part that hasn’t been great is that I’ve had an enormous deal of worry leading up to—and after—my birthday.

I also overdid it in terms of being up, about, and mobile. It took me a full three days to recover after Saturday, but there’s not much I can do about that. In the days leading up to my party, I experienced a pain crisis, resulting in a doubling of my pain management medications. New pain. New places. New severity.

…but how many more will I enjoy?

Look, I’ve never made a big deal about my birthday. It’s just not something that I’ve cared much about since I was a little kid.

I don’t usually even have a party. I’ve preferred to have a quiet date night with Shannon or a meal with family, rather than doing anything huge. Life’s simple pleasures.

I party like a raccoon: by eating garbage and sleeping.

This year was distinct from the rest.

I haven’t been able to shake the feeling that this could have been my last birthday. Now, I’m worrying about Christmas.

The trajectory of my cancer changed during the summer by progressing in a way that’s extremely challenging to treat. My cancer isn’t under control. I will not be cured.

It may come as a surprise, but with progression into my bones and vertebrae, things are just different now. Hope itself is different.

Where I’ve been struggling these days is with displacing the sense of worry with feelings of hope. I’ve been making some progress here, but it’s been slow going.

It’s a matter of redefining what hope looks like in my situation.

What should one hope for when their body is slowly being overrun with disease?

It’s not like I can jot down some SMART goals and measure my progress.

…can I?

  • Specific: Slow or eliminate the progression of my refractory colon cancer
  • Measurable: As measured by diagnostic imaging, laboratory results, and patient-reported symptom and outcomes impacting quality of life
  • Achievable: I can commit to the planned course of treatment
  • Realistic: This fits within the realm of the possible with my current course of treatment
  • Timebound: Progress will be assessed in three month intervals

That seems silly.

Note to self: You can’t project manage your cancer.

Instead, I suppose I can hope for quality time with friends and family.

Isla—my niece—has her second birthday coming up. My sister-in-law is expecting a baby before Christmas. Then, Christmas itself is coming. The new year. A trip to Vegas for a friend’s fortieth. A couple’s trip to the Dominican Republic in February. My dad’s birthday in March.

These are the big things.

There are also smaller things to look forward to.

Having a weekly date with Shannon. Enjoying an outing with my dad. Indulging in a new beer release with friends. An afternoon coffee drop-by. Reading a book. A snuggle with my cats. Advocacy. Playing videogames.

Those little things go a long way. They keep me afloat and sane.

A reality check

It’s taken some time, but I’ve become comfortable with the fact that I’m living on borrowed time.

As I’ve stated before: cancer patients don’t have the luxury of denying their own reality.

It’s very easy for people to think I’m healthier than I am.

I do look pretty healthy in photos. It’s easy for me to set aside the cane, stand up, and pose for a shot or two.

That veneer is extremely thin.

Even though I’m feeling content—even happy, at times—it isn’t an exaggeration to say very plainly that I am dying.

If you peek the curtain and spend fifteen minutes with me, you’ll notice that I’m slow to stand up. I use furniture as leverage. Walking and standing are difficult without the use of a cane. My gasps, groans, and sudden moments of pause are noticeable tells of my discomfort or pain.

I use the elevator instead of stairs, accessible parking when it’s available, and can’t even comfortably pick up a cat.

Cooking at the stove has become difficult as pain slowly rises through my back while I stand, forcing me to take a seat until it recedes.

It’s like being in a video game with a stamina mechanic. If you push it too hard, you need to take a moment and refill your metaphorical energy bar.

The hydromorphone makes conversations with me akin to talking to someone who can’t keep track of what’s going on. I forget things (more than usual) and have come to rely on technology to fill that gap.

The icing on this cake is that some celestial dice roll takes place overnight, dictating how my day will go. I’m picturing a Lovecraftian horror toying with my life just because they can.

It’s like I’ve angered the Old Ones or some shit.

Maybe people would be more comfortable knowing how much time I have left. I know I’d be happier with some precise information.

There’s no forecast, but there’s an analogy: if my cancer timeline is a game of sportsball, we’ve now entered the third quarter.

I’ve had minor progression in my liver since three months ago, so we’re trying something new. FOLFIRI has failed me.

Thank U, Next

I’m moving onto a pill form of chemotherapy called Lonsurf (TAS-102 trifluridine/tipiracil) and will have IV treatment with Zirabev (similar to bevacizumab) every two weeks.

Unfortunately, this treatment is not provincially funded, so I am exploring options through private insurance and through the drug access coordinators available through the cancer centre and third-parties.

It’ll get funded. We just have to try insurance first.

With this combo of Lonsurf and Avastin, median overall survival is 10.8 months from the start of treatment. Half of the people on that combo lived longer, while the other half did not.

We don’t know how steep the trajectory of decline will be, but this gives us something to work with.

In my case, the likely path for this disease is to cause liver failure as the metastases overrun it. It could also make its way into my lungs, but has so far—and surprisingly—not taken up residence in my breathers.

I feel the need to be absolutely crystal clear: colon cancer kills by causing organs to fail. I’ve watched it happen and it’s not pretty.

As my condition worsens, I am planning to have a conversation with my team about Medical Assistance in Dying (MAID).

It was always going to be a draw. I die and the cancer dies with me. The only difference is whether or not it’s a draw on my terms, or the cancer’s.

I understand that MAID is a controversial topic. My stance has always been that people should be able to take control of an inevitable death. What’s the point of spending so much time on quality of life while neglecting quality of death?

If you’ve stuck it out this far, then I hope you know how truly appreciative I am that you’re following along with me.

The topics are unpleasant and heavy. The callousness of the disease shuffles us into places we’d rather not be.

Thanks for being here and taking an interest in my ramblings.

I appreciate you.

CancerCanuck

My name is Jason Manuge. I'm an early onset Stage IV colorectal cancer survivor. You can find me on social as CancerCanuck!

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