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Terminal Cancer, Day by Day

A Stoic Response to Loss

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Sometime after Isaac was born in 2013, I lost my sense of smell. Or maybe it happened while I was pregnant. My relationship with food roller-coasted dramatically during those 34.5 weeks: I was constantly queasy for the first three months, to such an extent that I couldn’t even walk through a grocery store without feeling sick. I was grateful that we lived on a farm, our closest neighbours hundreds of feet away, because I could wander over to an isolated corner of our property and try to breathe in enough fresh air to fight down the nausea, or vomit in the privacy of the scrub trees.

Then, around the three month mark, the switch suddenly flipped and I loved food again. It was a distinct moment, as I entered a grocery store in Cobble Hill, and I almost cried with relief (and pregnancy hormones). Suddenly the shelves of food called out to me. I remembered how good my favourite foods smelled and tasted, and I filled my shopping cart with everything I hadn’t been able to stomach since the start of my pregnancy.

And then, around this time or within the next year, my nose stopped working.

I wondered how it was that others were able to notice Isaac needed a diaper change. I couldn’t smell anything. I learned to pat his bum constantly, to check whether he needed a dry diaper.

Family rhapsodized over the scent of a newborn, but I thought they were just being weird and this was another of those “romanticizing parenthood” delusions.

Visiting friends commented on the manure-y air when a farmer neighbour fertilized their pasture. I never noticed the smell, but thought I’d just become acclimatized.

Brock paced the house, hunting down a rank can of garbage or bag of compost, unable to sleep. I teased him for his overly sensitive nose.

Finally I realized I was no longer smelling freshly-cut grass, or my cups of green tea, or the lemon filling of my pies — my three favourite smells.

I asked my (award-winning) family doctor about my missing sense, and he said it was probably a stress thing, what with the pre-eclampsia/premature birth and Brock’s cancer and all. He had a point: my life has been a soap opera.

And then I realized that I couldn’t taste anything either. Maeve tested me: she put some oil of oregano drops in my mouth. Apparently oil of oregano tastes revolting and smells worse. I only experienced the sensation of it going down my throat. It was hot and my eyes watered, but I couldn’t smell or taste anything.

There doesn’t seem to be anything I can do about my missing senses, so I’m learning to appreciate this new way of experiencing the world.

A family friend sent me a spectacular bouquet of stargazer lilies when Brock died. I remember how these flowers are supposed to smell, and I can’t experience that right now, but I am floored by how beautiful they are. I spend a lot of time studying the blossoms, all the variations of pink and white and the interesting textures on the petals.

Last week I joined a long table of family at the Old Firehouse Wine Bar for Old Fashioneds (Brock’s favourite drink) and ordered the meat & cheese & bread plate: the bread was drizzled with truffle oil and sprinkled with rock salt. The bread was amazing. I think I could taste the salt (or at least experience how it felt in my mouth), and I loved the textures of the bread and cheese. Jeff made me non-alcoholic drinks of various colours (and, presumably, flavours), and I felt the tonic water fizz down my throat.

I like to conduct little experiments to test my senses. Today I composted three-day-old crab shells (from a farewell feast when my visiting sister left for home) and sniffed mightily, trying to smell what I’m pretty sure must have been a horrible, strong stench. I could smell a little bit of sea creature-ness, but nothing unpleasant.

I still stop and sniff every flower I find, mostly to be a good role model to Isaac.

I’ve been writing all of this out as it comes to me, trying to articulate my experience, and now I see all kinds of metaphors in my sensory loss.

I discovered Stoicism (the ancient Greek philosophy of life) while listening to an Ideas interview on CBC Radio, while driving home from the Sidney Farmers Market in 2010-ish. The interviewee, William B. Irvine, had written a book called A Guide to the Good Life: The Ancient Art of Stoic Joy. I don’t know which came first — my Stoic approach to life, or my discovering Stoicism and striving to adopt its approach. All I know is that friends and family often comment on how I’m able to remain happy (and how Brock was able to be happy) despite the life challenges we’ve faced. Stoicism — and, specifically, Irvine’s Guide to the Good Life — articulates how I deal proactively and reactively to stress.

One main tenet of Stoicism is to recognize what we don’t have control over (e.g. cancer) and instead focus on what we do have control over (e.g. our quality of life). We couldn’t cure Brock, but we could make his final years, months and days extraordinary, by road-tripping across Canada and hosting election parties. Instead of weeping over Brock as he died, we watched Lord of the Rings as a family and karaoked “Mr. Jones.”

I lost my ability to smell or taste. I had a difficult pregnancy, almost died from eclampsia, and then became mom to a premature, underweight baby. My 38-year-old husband just died after living with cancer for three years.

But I smile most of the time, had a good laugh with my dad this morning, and continue to water a vase of stargazer lilies with the hope of seeing more blossoms.

Terminal Cancer, Day by Day

What to Tell the Kid

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I’ve been preparing Isaac for his daddy to die for months now.

The subtle work had already been done: my librarian mom stocked his bookshelves with books about feelings, death and saying goodbye about a year ago.

But sometime this summer I realized Isaac was spending too much time watching YouTube videos of dads playing with their kids. Specifically: The Axle Show. Isaac would watch this show on our iPad while his own dad napped through the afternoon. I realized I had to explain why Brock wasn’t playing with Isaac the way other dads played with their kids — or even spending as much time with Isaac as I did, even though all three of us were home.

So I started by explaining to Isaac that his dad was sick. Not the normal kind of sick that Isaac or I got sometimes — a different kind of sick. It was the kind of sick where, although some days his dad might feel better, Brock would never get better.

And, eventually, his daddy would die.

And then of course Isaac asked if he would die, and if I would die, and I said yes, everyone dies eventually, but Isaac and I wouldn’t die for a very long time, until we were very old (I hope!).

Keep in mind — Isaac was three when we were having these conversations, so I would say something and then he’d get distracted by a Hot Wheels car, and then a week later he’d ask about the dying part and I’d answer and then he’d want to play in his sandbox.

My research into kids and grief said that there are four key questions/messages that need to be dealt with, sometimes over and over again. They are:

  1. “Did I cause dad to get sick and die?”
  2. “Can I catch it?”
  3. “Can I cure it?” (Isaac loved to play doctor and give his dad medicine.)
  4. “Who will take care of me when dad dies?” (I tell him every day that it’s mom and Isaac, together forever.)

Once we had the “sick” conversation, Brock and I noticed Isaac saying he was “sick” more often. We would remind Isaac that he was healthy-person sick, and that he would get better.

Oh, I just remembered Isaac saying this on a camping trip this summer:

ISAAC: “When I grow up, I want to be a daddy and get sick.”

That destroyed me and Brock. It’s hard to be a grown up and respond properly to stuff like that.

It was very tempting — at many times over the past year — to send Isaac to stay with my parents and sister’s family in Invermere so that I could focus on Brock. But Maggie Callanan’s Final Journeys emphasised the importance of children being part of the dying process, both to help them with their own grief and so that adults could model grieving behaviour appropriately. Luckily my mom came to stay with us for five whole months this winter, and Brock’s parents and brother’s family took Isaac for play days on a regular basis this summer. I was able to take care of Brock as he became sicker, and Isaac was still active and having fun.

Isaac was here when his dad died at home last week. He was the first person to come into the room to say goodbye (which was his choice — I wouldn’t have made him do it). Then he went back out to play.

In the week since Brock died, my sister and dad have been staying with me: we try to have consistent answers for Isaac’s questions, which he asks at random times.

He wants to know where his dad went. (“Daddy died, remember? He’s going to turn into dirt, and flowers and trees will grow out of the dirt.”)

He asks when his dad will be back. (“He died, so he won’t be coming back. But your mom is here to take care of you and we are here too.”)

These spontaneous questions are like little paper cuts. But it’s our job to answer him truthfully and patiently.

I’ve read that children who lose a parent have to re-deal with their grief from different angles over and over again as they grow up. The questions and challenges Isaac has around his dad’s death as a four-year-old will be different from those he has as an eight-year-old, or a fourteen-year-old, or a young adult. I’ve dreaded this ever since I read it.

I am putting together a “Box o’ Brock” for Isaac, full of Brock’s favourite clothes and books and his special coffee cup. Brock wrote a letter to Isaac that I’ll include in there, and his friends are going to print out their epic Facebook Messenger conversations, which capture so well Brock’s voice and brain. We will always have photographs of Brock on the walls, and I’m already reminding Isaac of what Brock would say in certain situations (“It’s important to carry your own soccer gear. Dad says the best athletes do that.”).

As hard as Brock’s death is on me, his parents, his brother and his friends, no one is more destroyed by this than Isaac. He has lost his dad, who would have been a proud coach, teacher and role model. Brock wanted them to take piano lessons together. We were going to learn Latin, as a family “secret language.” Isaac would have learned how to skate backwards like an NHL star, and how to throw a baseball properly.

Isaac doesn’t understand yet what he’s lost, and my job is to support him as he grows older and begins to realize.

And I hope four-years-old is old enough to remember his dad.