I was diagnosed with colon cancer at 32.
After a surgery to remove the tumor and the surrounding tissues, I thought the cancer was gone. Eighteen months later it was back, it was terminal, and I was told I had one or two years left.
I am now 38, and have a bunch of little tumors the size of marbles and a couple of bigger ones, the size of golf balls, in my lungs. I’ve run through six different kind of chemotherapies, and even more diagnosis variants of “this is your last (fill in the blank).”
And while I’ve gotten sick, lost hair, lost weight, lost the ability to play sports and roughhouse with my daughters, I’ve never quite died. Death, in my case, seems to like the snooze button.
I’ve outlived that initial estimated time of departure but I’ve never gotten any suggestion that I’m going to beat this thing. The only question is when I’m going to die, and how bad is it going to be.
I’ve had a little practice telling friends and family bad news and then coming back with worse news.
There’s this face toddlers make when they realize they won’t make it to the toilet. The mess is just happening. Here and now.
I’ve seen this face on well-trained dogs, too.
After the kid resigns himself to the fact that it’s happening, he still has to decide whether it’s landing on the floor or in his pants. I imagine those of us with cancer get a closely related set of expressions when we realize it’s time to tell people. Giving someone cancer news is like shitting on their living room floor.
I don’t know why I identify with this moment. Maybe some time during adolescence, we learn not to talk about personal pains and fears in public, in much the same way we’re trained not to poop in public.
Go where no one else is, get it out, make some noise if necessary, wipe well, wash your hands of it. Come back to the conversation as if nothing happened, and everyone else will pretend that nothing happened. But I can’t pretend that cancer didn’t happen – just like the kid who didn’t make it to the toilet can’t pretend his pants aren’t filled. It’d be uncomfortable, you wouldn’t move right, and it would smell.
A friend of mine teaches grade school kids computer skills. He was cleaning up after class one day and saw what looked like a little Snickers bar under a desk. It wasn’t a Snickers bar. Not only do I understand this kid, he’s kind of my hero. Dropping a load in public where nobody notices, and you have almost no residual clean-up, is a staggering act of genius.
I wish I could’ve taken the path of our intrepid first-grade friend. I’d sneak under a desk and drop cancer news as a mass text or email.
“Hey everybody, guess who’s got cancer? Me! That’s right. :) The original tumor in my colon metastasized and now there are too many little tumors in my lungs to even operate. You know what that spells? T-E-R-M-I-N-A-L. I have one, maybe two years. I start chemo next week.”
And how should we end that mass text or email? “Have a great day!” or “Cheers!” or “Bye!”
The “Bye!” option is a little ominous and mean. But how should you leave a friend’s house after shitting on their living room floor? I say, go out on a high note.
Telling friends bad news about cancer, in my case, has involved comfort food, alcohol, sorting through a lot of denial. When I was first diagnosed, I told the friend who drove me to the colonoscopy that I had cancer in the parking lot. He looked at me and said, “That’s a joke, right? That’s a terrible joke. Right?”
After assuring him that, while I did have the tendency, I wasn’t a complete sociopath, he said, “I know you can’t drink because of the sedatives from the procedure, but I need a drink and a burger and you can at least have the burger.” So he drove us to The Nook and we got burgers, a beer, and a Shirley Temple. We sat at the bar for a long time staring straight ahead.
I tried not to say anything horrible -- because once you have it, cancer is sort of funny -- and he didn’t really say anything at all. We ordered a second beer and another Shirley Temple because, now I know, that’s what you do after you shit on someone’s day.
You learn a lot about language when you tell people you’re dying.
I called my boss after I got the terminal news. He’s also a friend, but it was easier to think of him as a boss in this case. I thought he would probably need to start the process of hiring my replacement, and that seemed like the easiest excuse to have a conversation I didn’t want to have.
We’ve car-pooled so many times back and forth to south Minneapolis that I could tell he had answered in the car. My memory suggests he was headed south in the left most lane on 35W, just over Lake Street when I told him. He always drives in that lane. That specific bit is probably the kind of flourish that my brain made up because brains make up shit like that all the time, especially with the pain meds doctors prescribe, after they’ve decided that you’re not living long enough to get addicted to anything.
After I told him, I heard some pounding on the steering wheel and “fuckfuckfuckfuckfuckfuckfuckfuckuckfuckfuckfuckfuckfuckfuckfuck!”
I felt loved.
He’d failed to find any adequate immediate response and, strangely, stumbled onto the best and most straightforward reply to my cancer news. It dawned on me slowly. Yes, “fuck!”, that is the right word.
I rolled it around in my head as he kept going, made the word bigger and smaller. Hmmm. I really don’t have anything in my vocabulary as good as this. “Fuck! FUCK! FUUUUUUCK!” Yup, that’s right. “Fuck, fuckity, fuck fuck fuck.”
I think I had tears in my eyes and a smile on my face by the 10th time he said it. He gets it. I had a lump in my throat by the 15th. He loves me… And tears rolling down my cheeks by the 20th. …like a brother. This might’ve been the kindest, most compassionate, and loving response I got.
I think we swear when language fails, when our brain fails to provide adequate descriptors for our experiences. And swearing actually blunts pain (so says the research here and here). I tell my two daughters this. “Swearing is OK if there’s nothing else that works. But if you find yourself swearing a lot, you probably need to work on your vocabulary and language skills.” They’ve taken the lesson to heart and they’re smart as hell. But they’re teenagers with a dad who has terminal cancer so they still swear a lot.
I like the story of Job. It’s the oldest story in the Bible, written before even the creation story and the Garden of Eden. And it serves as a neat little proof that most happy-go-lucky, suburban Christians have little to no idea what’s actually in the Bible or, if they do, don’t take it terribly seriously.
The premise of the story is a bet. The devil wagers that Job will reject God if the devil can do whatever he wants to Job. God disagrees and takes the bet. Tragedy ensues. Job’s family dies, he gets sick, and his wealth and status disappear. But God wins the bet.
This is one reason why I don’t understand it when Christians say things like, “God has a purpose.” How is the assurance that God might whimsically kill me off like one of Job’s family members supposed to be comforting? And to win a bet.
At the end of losing everything, Job’s friends show up and chastise him about what he should’ve done or how faithless he is. (It turns out some folks like to do that when you tell them cancer news.) Job even throws a little tantrum before, at last, God decides he’s had enough. God gets angry, evokes Leviathan, and lectures Job about how small Job is. Job goes silent. His friends come back silent. And then, after sitting in silence for a while, the story moves on.
Job’s silence is my favorite part. After all the swearing and pounding on the steering wheel, there’s silence. We all feel small in the midst of terminal cancer. After all the anxiety-filled questions that caring-but-unwitting family members and friends repeatedly ask -- Q: Are you going to get a second opinion? A: I already did. Q: Is there another treatment? A: Not really. Q: Isn’t there something you could have done? A: Probably. -- there is silence. There’s nothing more to say, and there’s a deep comfort and peace if we can remain present with each other in that silence, eyes fixed straight ahead in the car, or on a point behind the bar at the Nook.
My youngest daughter is 12, and wise in ways I wish she didn’t have to be. When we’re driving in the car, she’ll sometimes say, “Dad, I hate cancer.” In that moment, you can hear language fail. And all I can say is, “I do too,” and squeeze her hand in mine. We go on in silence.
Adam Johnson is a psychology professor at Bethel University in St. Paul. He says his latest round of chemotherapy "managed to do a little bit of unexpected good," and is continuing treatment.