This week marks the two-year anniversary of my lung cancer diagnosis. On November 8, 2017 I wasn’t sure I’d make it to Christmas – my breath was that labored and the news that overwhelming. So I’m writing today to say…
I’m making plans.
I’m not naïve about my diagnosis, but I’m also not limited when I think about the time I have.
I celebrate the contents of the last 730 days: family, friends, Juno the dog, pigs, a chicken coop, ducks, rabbit babies, Maine, Minnesota, Michigan, Wisconsin, Florida, Texas, Cancun, volleyball, cross-country, Girls on the Run, science club, 3 5K’s, work, play, rest, love, music…
I look forward to more.
I have a large stack of books to read.
I have words and songs I want to write.
I can’t wait to get seeds in the ground this spring.
I’m thinking about building a deck. With help.
I’m making room for the best days of my life.
That last line? Impossible to imagine two years ago. Utterly impossible. But here I am, with cancer, rediscovering the simple, profound truth that joy is a source in a life well lived and not a result. My heart, my love, my gratitude for all, near and far, now and long ago, who provide such beautiful, compelling source material. Here’s to the year ahead. And the next…
Meet Rosy and Gretta, two new members of the J-K mini-farm. They are Idaho Pasture Pigs, from our friends Brian and Angela at Nature’s Roots Farm in Oxford, NC. It’s been a thrill to welcome them and put them to work in the woods rooting up weeds, eating table scraps, and just being adorable. Sylvia has always wanted to have pigs, and Karla, who grew up on a hog farm in central Wisconsin, is experiencing a sweet echo of childhood days.
This morning began our fifth day with these little lovelies. I headed out at 5:30 to walk the dog, feed the duck, and check on the pigs. Dewy grass, clean air, clear skies, and a full moon… It felt nice to begin the day with these simple things. Then I came in the house and Karla led me to the living room where our ceiling was bulging with a water leak right under the upstairs shower.
I feel like when you get diagnosed with cancer, your name should go on a list of people guaranteed to not have other crappy things happen in life – a no car trouble, no major appliance breakdowns, no wobbly-screechy wheels on your shopping carts, no leaky pipeslist. Sadly, there is no such list, so stage IV cancer occasionally and weirdly gets temporarily upstaged by a plumbing catastrophe. Sigh… So we moved wet furniture and pulled out some fans, and I spent the morning calling contractors and insurance people.
Having done all that there was to be done (for now), Juno and I went back out and spent some time in the woods behind our house. Rosy and Gretta love nuts, so I took a jar with me and filled it with acorns and hickory nuts. That’s one way to handle a mess like this – spend an hour in the wood foraging for pig treats. It was delightful.
I’m vividly reminded that we don’t get to write the entire script for our lives. Some things just happen without warning and without permission. But we do get to ask, “How will I bear light even as I bear disappointment?” So, on days like today, I protect and celebrate all the light I can gather. I give thanks for my own capacity to create, experience, and receive joy. And like a pig with a pile of acorns, I dive in, head first.
I found out I had cancer just over 23 months ago, and this Sunday I’m running a 5K. I don’t say this to brag. In fact, “running” is a pretty generous word. Walking, shuffling, scuffing, straggling… Still, it’s another opportunity to marvel at this death-defying life I’m living, and I’m grateful.
The 5K is a fundraiser for the Lung Cancer Initiative of North Carolina, a fabulous organization dedicated to saving lives and providing support to those affected by lung cancer. Part of their mission, too, is to dispel myths and raise awareness about the disease. For example, they point to these statistics published by the American Cancer Society:
If you’d like to support “Team Ben,” I’d welcome that! You can go HERE and sponsor me personally or just make a donation to the team. All funds that we raise go directly toward the work of the Lung Cancer Initiative. Thank you!
1,586 days ago, I had a dream in the middle of the night. I was the new pastor of a church I’d never seen. Someone was leading the way, and we walked together up an old gravel driveway surrounded by tall grass. We arrived and there was no building, no steeple… just a farm.
I woke up. It was 3:17 in the morning, and all I could think was how wildly fun it would be to be a church on a farm. Goats, chickens, eggs, the smell of hay, folks gathered in a barn or in an orchard… I googled “farm church” to see if such a thing existed, and when I couldn’t find it, I went to GoDaddy and bought www.FarmChurch.org.
That was 1,586 days ago. Karla said yes – the biggest and best yes of them all. Allen said yes – “That’s it. I’m in!” were his exact words. Brandon said yes too, and the three of us spent breathless weeks and months visioning, deciding, pouring over maps, wondering… dreaming. Our families (bless them!) lived a yes with us that drew us all, in our own time, down a road with a thousand blind corners, a thousand occasions to trust.
Today Farm Church is a church that meets on a farm and leverages the resources of that farm to address food insecurity. About 90 people call Farm Church home these days. Their collective YES still stuns me and emboldens me to believe in the dream as it continues to unfold. Not my dream anymore, of course (it hasn’t been mine for a long, long time) but our dream, our continuous “yes, and…” to each other and to God, who always seems to respond with a “yes, and…” of her own.
Now I have 3 more days. This Sunday will be my last as Farm Church’s co-pastor. After that, I’m not disappearing, but I will disappear for a while to let Farm Church settle in with new rhythms of life and leadership. They’re in amazing hands – Allen’s, of course, but each other’s too. Good, strong, miracle-making-and-receiving, capable hands…
I feel like I have a galaxy of last words to cram into one sermon this Sunday, which won’t be good for anyone, so I’m trying to put some of it here. Two of them are THANK YOU. Starting Farm Church has been like jumping from a great height and trusting wings to grow on the way down. Friends, you have been the flight crew. I swear it feels like a million people jumped with me and cheered their guts out until we took flight. You’ve supported Farm Church in so many ways. And then when I got cancer it felt like you all sprouted wings of your own and just carried me. I am just dazzled with gratitude – I simply cannot convey how profoundly thankful I am for you.
A whole flock of you have been giving to the Live Into Hope fund these days. I have to tell you that, even as I approach disability, you are making me feel like a damn ass-kicker. I swear to you I won’t quit. I may move slow, but you are reminding me that I’ve got fight left, and that this is one more chance to jump and find my wings. Thank you, thank you, thank you…
I often say at Farm Church that it doesn’t seem that Jesus came to make a bunch of churches – that he was way more interested in helping people see, enter, celebrate, and even co-create the kin-dom of heaven. I think of you all and my own vision and energy for that reality is renewed. I love you, I thank God for you, and I am because you are.
With Awe and Belonging,
This week I celebrate 1 YEAR SURVIVING-STRIVING-THRIVING with cancer. On November 8, 2017 my doctor called with the news: “Non-small cell, metastatic carcinoma… stage 4… possible surgery…” One of the worst calls ever, heart exploding in my chest, and I was sitting in my car in the Target parking lot of all places.
Well guess where I was on November 8, 2018? Mexico, fools! Karla’s sister Kristin graciously gifted us with this blissful trip to Cancun, and we lived and loved it well. Time in the sun, snorkeling, drinks on the beach, lazy afternoon naps in the shade… all of it so heavenly.
So in honor of 1 year, f#ck cancer. And by “f#ck cancer,” I don’t just mean damn the disease, though to be clear I’m cheering for the team that will truly f#ck cancer up. I also mean “F#ck living like the end is in sight.” I’m not done. I’ve got fight left in me, even as I move toward disability, and so I embrace the call and wonder of being alive and wondering what’s next. So f#ck cancer and f#ck the thought that Karla and I won’t be somewhere awesome next year, loving on each other and casting dreams for 2020.
To everyone who has been light and love to me this year, you are healing, you are hope, you are courage, you are screaming banshee warriors, you are mine and I claim you with triumph and gladness, again and again. Thank you and all my love!
I am a Body
I fell this week. It was a crisp Tuesday afternoon and my daughter Ezzy and I were breaking up firewood. I stomped on a branch and it shot out from under me. A brief second of freefall and then my back hit our front sidewalk and my shoulder smacked into a ceramic pot. It hurt. A lot. Nothing was broken, but I took some time to sit up. Ezzy was great. “Dad! Are you ok? What do you need?” Grace under pressure, that kid.
Living with cancer, incidents like this (and smashing my thumb with a hammer, slicing my finger with a fillet knife, burning my hand on the cast iron…) take me back to a simpler time when I could just curse, be sore for a while, lose my thumbnail, bleed a bit... Now I’m like, “Really? REALLY? In case you haven’t forgotten, I need no extra reminders of humanity’s frail form here. Honestly, lung cancer was quite enough.”
I don’t really pray that way. Goodness, how do I pray these days? That’s fodder for another post. For now, I’ll just say that when pain is pulsing through your scapula, I think you’re allowed to espouse shitty theology if it’ll help you get through those first debilitating seconds.
After a few days, a good hard fall and the lingering soreness in my shoulder serve as powerful reminders that I am a body. 37.2-trillion cells of blood and bone, muscle and guts, heart pumping, mind spinning, cancer… It’s all me, feeling and responding to life as I fly and stumble through it. By the way, I also believe that I am more than a physical body. I am spirit, soul, light, love, memory… But in an every-day, shoulder-meet-flower-pot sort of way, I am a body.
There’s a lot in my faith tradition that drowns our body-ness with shame – a litany of flesh-vs-spirit texts in the Bible and a long history of interpreting those texts to mean that our bodies are dirty, sin-born earthen shells that must be rigorously restrained. Add cancer to all of that and you add disease to dysfunction.
So I get the temptation, especially now, to differentiate the physical from the non-physical me – to watch even my fingers as they type this sentence and wonder about their temporal nature. Or to contemplate the cancerous cells in my lungs and lymph nodes and imagine my eventual withdrawal from earthly to less-foibled form.
Next week I’m applying for disability and getting a CT scan at the cancer center. These are big days. So today I claim all the truth I can. I am a body, dammit, and in body I am good. The Divine Source that was known to hover over the chaos in those pre-creative moments hovers over the chaos in me still – the questions, the doubts, the endless wonderings, but also the 37.2 trillion cells of me, ordered and chaotic, behaving and misbehaving. God hovers over the physical body me, stirring the waters with dream, hope, promise, possibility…
“Is it good?” I ask. The breath in my lungs, the touch of my skin, the pain in my shoulder, the Divine in and beyond me… They all say “yes.”
They said “pneumonia” a year ago. Which was true. My chest gurgled and grumbled with each breath I took. In fact, as much as anything, I credit my case of pneumonia with the eventual discovery of my cancer. Who knew there was a tumor lurking down there in the deep recess of my right lung?
I move into this fall season with this sense of the year behind me being the epic crapstorm of my life, and yet I can’t help but feel, well, joy. It’s a strange, surreal experience to be doing so damned poorly and damned well at the same time – to grapple with the daily realities of cancer and to simultaneously embrace the daily gifts of parenting, partnership, Farm Church, love, kids off to school, cups of good coffee, new friends…
A part of it, I suppose, is that 10 months ago, I wasn’t sure I’d be around right now. And here I am! On Sunday I surprised even myself and ran a 5K for the Lung Cancer Initiative of North Carolina. To prepare for this race, I followed my usual 5K preparation routine, which was that I didn’t prepare. Nailed the pasta dinner the night before, but other than that, no real conditioning. Thus I arrived on race day uninjured and slightly nervous about my chances.
But then a couple of things happened. First, the lung cancer survivors who were present were invited to the stage before the race. There were a few dozen of us – men, women, all ages – all wearing these bright blue shirts with the word “SURVIVOR” on the back. And we stood there facing the pre-race crowd – a crowd that was clapping and screaming their brains out for us. And I thought to myself, “Holy damn – this is not the club I wanted to join, but here I am, and I’m standing here with this bunch of ass-kickers, and I’m bound to them in this very deep, tragic, particular way.” Others were chatting, sharing info about treatment, oncologists, and the like, but it was all I could do to hold myself together as I swelled with a sense of kinship, shared struggle and life…
And then I actually did run a 5K. I started out with beloveds Karla and Sylvia, and we moved pretty slowly for the first mile, but I found a bit of a stride and this perhaps irrational thought occurred to me: “What’s a little 5K when you have stage 4 lung cancer?” This is generally not a good question to ask someone who has my illness, by the way. But in that moment, it just worked for me, and I thought to myself, “Hells yes. I’m running.” So there I went. And I’ll tell you, there’s nothing like running alongside other lung cancer survivors and their families and loved ones to make you forget about your utter lack of training. Seriously – I ran like the Ben Johnston-Krase version of the wind.
Today is Thursday and I’m still sore. But I feel good. Next year, maybe with a little training, I’m going to run it again, and I’m going to bring a team with me. Want to be on “Team Ben”? Let me know – it’s going to be a party.
I get that question a lot these days. It happens when someone finds out I have lung cancer. Their face goes a blank for a second, and I can see their eyes searching the air around me for the right words. “Did you smoke?” they blurt out, or some version of that question. Sometimes it’s just one word: “Smoker?”
I wish the whole world could read this and understand. Unless you are a healthcare professional assigned with a patient’s treatment, this is a really, really horrible thing to ask someone who has lung cancer. In case that didn’t sink in, this is an outrageously small-minded, insensitive, shitty thing to ask someone who has just told you he or she has lung cancer.
You might as well ask, “Is it your fault?” That’s what the question means, right? Did you smoke? Is it all your fault? Are you the one to blame? Did you do something stupid and now you’re paying the price?
Somehow the question always takes me by surprise, so I’m seldom prepared to say the things I’ll later fantasize having said. Things like, “No, but say, is this the kind of sensitivity you reserve for all those special occasions when someone tells you they have a potentially fatal disease? You know: Heart disease – cheeseburgers? Cirrhosis – drink a lot? Hepatitis – dirty needles? Goodness me, have you thought about a career in pastoral counseling?”
“Just crack,” I said once. I was tired that day. Tired and annoyed at the prospect of comforting yet another person innocently but heartlessly looking to propagate the lie that everything in our world makes sense. For if I smoked like a chimney, even for a few years, then perhaps the universe could still be fair.
I think that’s what people are looking for (and afraid of not finding) when they ask me the question. Fairness and sense and the ability to stave off the gnawing fear that awful things happen with no rhyme or reason – that at any moment, reality can dangle your life over the abyss and it has nothing to do with who you are or what you’ve done.
In that light, I put, “Did you smoke?” in the same category as other ridiculous things to say to someone who has cancer. Things like “It’s all part of God’s plan,” “God won’t give you more than you can handle,” and “Everything happens for a reason.” They’re all attempts to name order in the chaos and, failing that, to squeeze meaning out of the inexplicable. I didn’t smoke, my cancer isn’t part of God’s plan, sometimes we get way more than we can handle, and shit happens. I’m sorry if that’s upsetting to you, but trust me, it’s not nearly as upsetting as finding out you have stage 4 lung cancer.
And I get it. It would be great if the universe lined up a little more nicely sometimes and we didn’t have to fend off thoughts of life’s terrible fragility. But welcome to the club of cancer patients, Rohingya Muslims, Syrian war refugees, children born with AIDS, and millions of others who don’t have the luxury of pretending that life is remotely fair. With me at least, it’s ok for you to admit what I already know.
So here’s a list of things I’d suggest you say to someone who tells you they have cancer:
“Oh [insert name]. No.”
“Dammit I’m sorry.”
“I’m honored that you would share that with me.”
And when in doubt:
“Wow. I don’t know what to say.”
Trust me on that last one. It’s ok. A lot of the time, I don’t either. Whatever you do, resist the temptation to bring order to chaos. Don’t try to rationalize, theologize, or explain my cancer. Instead, join me in conversation (preferably one that doesn’t begin with the question, “Did you smoke?”) and I’ll let you in on a little secret that I’m surprised to keep learning: God doesn’t seem to be in the business of making chaos “fair.” But God is summoning life out of it and calling it “good.” Lung cancer and a hundred dreadful questions looming around me… God hovers over even these chaotic waters, and somehow I believe that the goodness is coming.
I was 23 years old when my mom was diagnosed with lung cancer – likely the same cancer that I have now. 20 months later she would die from that disease, and during that time, I experienced such a range of emotions – anger, sadness, fear, hope, dread, gratitude, despair…
I remember having this vivid fantasy that I could physically fight her cancer, as if her disease could somehow take human form and I could have some time alone with it in a room. I’d fight unfairly, I thought. I’d be nasty, I’d sneak in weapons, and I’d come at it with everything I’ve got. I’d be ruthless.
Now I have all the time in the world to be alone in a room with that cancer. And the human form it has taken on is, well, my own. Only now I’m older, a bit wiser, less prone to violent fantasies, and more receptive to the reality that these cancer cells in my body – they’re my cells. They’re a part of me and they’ve just lost their way, growing beyond what my body was designed to do.
Today is Ash Wednesday. This evening the Farm Church community will gather at one of our gardens here in Durham. We’ll stand there on the soil, we’ll get out the ashes, and we’ll face each other’s human form and say the old words, “Remember that you are dust, and to dust you will return.”
I know those words now in a way I didn’t last year. And I live into hope that while my dust-self is coming, I still have time – time to love, to work, to give and receive… time to live fully into the life I’ve been given. And as I consider that which is temporary, I ponder that which is eternal, and wonder again about my mom, about her light that still shines, about the dust to which she has returned and to which I one day will also return.
My friend Jeremy shared a haiku with me the other day and it’s been rattling around in my head…
The news came today,
things look so different on
this side of knowing.
It’s actually coming up on three months since the news came to me that I have cancer. And holy shite, things do indeed look so different on this side of knowing. It’s not that life has come to a grinding halt – it’s that life has powerfully moved forward and taken on a different glow entirely and every relationship, moment, meal, nap, kiss, song, cup of coffee… exists in light of something I can’t (and dare not) unknow.
And the strange thing is that it isn’t all bad. I wouldn’t wish this diagnosis on anyone, but I wish everyone could feel this way. I wish everyone knew what it’s like to have the world rise up to catch you. It’s all so awful and awe-filled at the same time. Devastated and blessed, cursed and lucky, betrayed and beloved – that’s all me, and I’m utterly grief-stricken and grateful. Things look so different on this side of knowing.
AND TOMORROW, this wild-eyed, talented group of people are putting on a production of Pump Boys and Dinettes to raise funds for Farm Church so that my salary (with health care and death and disability benefits) is secure. I can hardly believe it. To get tickets or just to make a donation, go to PumpBoysForBen. I just learned yesterday that there’s are still some seats both nights, so there’s room for you! Hope to see you there. : )
On this side of knowing there’s stage 4 cancer, a CT scan this Friday morning, and giant question marks looming on the horizon. And there’s also some holy wondering, joy that comes from deep meaning, and a daily, uncontainable avalanche of gratitude that I can barely begin to express. It’s all so real I can hardly stand it. Thank you, dear friends, for catching me these precious and precarious days. I love you for it.
I have stage IV lung cancer and I write about that here. If you're out there and you're fighting cancer, solidarity. If you read "lung cancer" and you wonder if I was a smoker, read this. Living with cancer is a daily, death-defying reality - one that pushes me to not simply defy death, but to affirm life, bless goodness, cheer for wonder, celebrate beauty... you get the idea. I hope I do that here.