Did you smoke?
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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.

Peace,
Ben

While we’re all so grateful to have caught Ethan’s cancer so early, we’re in a sort of perpetual state of disbelief. It’s all so surreal and words often escape us. I found myself saying to him on the phone the other night, “No, no – you don’t understand. I have cancer – not you.” Even as his doctors have confirmed what we’ve feared, I still find myself hoping for a colossal medical mistake. I’m past the denial stage with my own cancer, but my mind wanders there for Ethan quite regularly.

Ethan is strong (he teaches Body-Pump!), wicked-smart, wildly funny, kind, compassionate, thoughtful… He lights up a room with his warmth and innate welcome. He and his spouse Jill have two amazing, talented young daughters, Willa and Addy. So, so precious. They are all life and love to me in such meaningful ways.

So we’re all in a bit of a freefall, mindful now more than ever before of life’s giftedness and unfairness, its beauty and its hardship. 
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When he announced this news on his own Facebook page, Ethan wrote, “Let me end here by saying that come what may I am determined to live well. None of us know where our days will take us, but I am resolved to meet this with all that is right and good in me and in this community.”
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He’s so good and amazing. I’m so lucky to have him as a brother. Even in his grappling with this, he is a source of great resolve and goodness for me. So we stand in strange solidarity together and move forward to meet this with all that is right and good in us and with all of you.

I’m on drugs. Yesterday I started a targeted therapy for my cancer. If you’re the praying kind and, in your praying, you like to give God specific instructions (“Dear God, please help _____ recover from surgery. She’s in room #__ at _________ hospital.”) then it may to know the drug I’m on is called “osimertinib” (“Dear God, please help Ben’s osimertinib kick the shit out of his cancer.”) Seriously, go for it. And if you’re not the praying kind, I honor that and would invite you to create a cheer with a line or two that rhyme with “osimertinib.” Seriously, go for it.

When I went to the pharmacy at the Duke Cancer Center to pick up my $13,776 a month osimertinib (thank you Obamacare – no other way I could afford this), the experience was nothing short of surreal. Weeks of tests, scans, biopsies, waiting, sleepless nights, crying, rallying, oodles of love and support… and it all lead up to a rather mundane, everyday transaction – a guy walking up to a pharmacy counter, giving his name, and being handed a small bag with a bottle of pills inside. To the casual observer, I could have been picking up cough medicine or 1-hour photos. It’s wild being given such a small, life-saving container in such a nonchalant way. 

When we were finished, the clerk who rang me up said, “Any more questions?” And I said, “Yes. Will you bless this for me?” The split-second look on her face said three things: 1) no one has ever asked me to do this before, 2) hell, yeah I’ll bless it for you – why wouldn’t I? and 3) I have absolutely no idea what to do or say to bless a bottle of pills. I held it up over the counter and waited. She paused for a beat, made up her mind, and then did a beautiful, polite bow toward the medicine, and as she did so, she threw in hand flourish for good measure. It was so sweet, so dear, this impromptu little blessing. “Perfect!” I said. “Thank you!”

So now the osimertinib is blessed and in my body, taking out cancer cells and holding others in check. But I believe that there are other healing forces at work in and around me. Friends, your prayers and support… I still don’t have words to say what it all means to me. A moment doesn’t pass when I am not confident that I am being held up by so many. Thank you for your presence in my life, for memories, silly stories, words of hope… I can’t express how much I appreciate you these days. 
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Much, much love,
Ben

This may go without saying, but for me this year Thanksgiving is complicated. Fifteen days ago, I was sitting in my car in a parking lot when my doctor called to share the news. A rush of scans, tests, biopsies, blood draws, and conversations with my oncologist have revealed that I do in fact have stage IV lung cancer – several tumors in my lungs that have metastasized to lymph nodes in my neck and lower abdomen. 

Within the next few days I’ll begin a targeted therapy that has seen some good results both shrinking existing masses and delaying growth. I’ve learned that I actually have two particular mutations active in my cancer cells – a situation that occurs in less than 1% of cancer patients. Fortunately, the targeted therapy I’ll receive is effective with both. In addition, because of this I’ll likely be participating in a national study with the Dana-Farber Cancer Institute in Boston. My oncologist at Duke asked me if I wanted to be in the study, and of course I said, “Yes! Yes! Anything to I can do. Anything to fight. Anything to help kick cancer in the ass. Anything to add to the knowledge base and practices from which I’m benefitting now.” 

So here we go. And this Thanksgiving, with life upside down, I have moments of fear, despair, doubt, deep sadness… But I have hope too. And a readiness to battle. And an undeniable sense of connection to you people in my life, who feel to me right now like this incredible, all-star cast of cancer-kicking, prayer-hollering banshee warriors who are mad as hell with me and lovingly hopeful for me. Friends, thank you. Reading your messages, I find myself cycling through the highlight reel of my life, and so many beautiful faces come into focus – so much laughter, so many tender moments, so many meaningful experiences, relationships, revelations, inside jokes, late night conversations, songs, campfires, visions, dreams, joy… so, so much. I hold it all now in a way I’ve not held it all at once before, and it fills me up.

So today Karla and I are grateful. Sad and mad – but hear me: grateful. Thank you, friends and family, for making that gratitude easier to come by. Raising a glass to you this Thanksgiving and thanking God for your presence in the world and in our lives. Much, much love.
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A Facebook post on November 16, just a week after my diagnosis.

Can I just say that while I can't respond to every word of love, hope, support, encouragement, lamentation, and flat-out solidarity, I need to let you know that your words have become life to me. Thank you all so much for holding me, Karla, and the girls so tenderly and powerfully in your thoughts, prayers, meditations, cursing at the sky, claiming and reclaiming hope...

I have news to share - a confirmation that I do in fact have lung cancer that has metastasized to my thyroid. I have an appointment with my oncologist tomorrow to go over this in detail and to discuss treatment. Add an MRI of my brain in the morning and a battery of tests on Tuesday next week and we'll be off and running. One thing that's become clear is that I perhaps couldn't be on a better spot on the planet to receive care. Duke's Cancer Center is top shelf, and I feel confident in their expertise.

I'm living in the midst of so much paradox. Time feels like it's galloping away, and yet I can't make the hours move fast enough to get to treatment. Life is in free-fall, and yet the most important things are snapping into focus with such distinct clarity - love for family, the gift of time, the will to fight and live... I've never been more vulnerable, and yet I feel so powerful because I feel the world around me rising up to my defense, shouting with me against the death-deals and holding me up. People, I feel your presence around me, in my body, spirit, soul. I know that I am not alone and this knowledge is Holy. Thank you.
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In the midst of it all, I had this thing on my calendar yesterday - a date with Ezzy's 3rd grade class to help them write a song about their values and identity as a community. A week ago I could hardly imagine keeping that appointment, but yesterday I felt good, so we did it. We wrote a song, "We are Mighty. Are You Mighty Too?" They are. So am I. So are we all. Thank you for your might with and for me, friends. So much love to you all. I'll keep checking in...
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