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.
Did you smoke?
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.
It's been a while since my last check-in. For a time over Christmas and New Year's, I had the flu and then a cold, and I'm not kidding - I honestly found myself thinking, "Gee, it'll be so nice to shake this stuff and just have cancer again."
So now I just have cancer again, and truly it's a relief. Things are going well. The Osimertinib is doing it's job, which means that my cancer cells are currently dormant. The mass that was bulging on my neck has shrunk, and my oncologist says that the same is true for the tumors in my lungs. A CT scan at the end of this month will say more, but based on the fuller breaths I'm able to take these days, I trust that those tumors have gotten much smaller too.
To be clear, the targeted therapy I'm taking doesn't "kill" the cancer in my body. Rather, it makes it inactive. We're not sure how long it will work for me. Could be a year or two or seven. We'll have to wait and see. Fortunately the side effects are not overwhelming, and so life is as normal as it can be, given everything that's going on.
I want to THANK all of you who have given to my "Live Into Hope" campaign. We set our sights on a goal of raising $130,000 to cover my salary and benefits through Farm Church, and to date, a good wheelbarrow-load of you have given just over $35,000.
I'm floored. Humbled. Thrilled. So, so grateful. Gifts have come in from "kids" who were in my Oswego Presbyterian Church youth group back in the 1990's. And from churches I served in Texas and Wisconsin. From former "UPC Barcodes" in Austin. From friends here in Durham. From people I've met at conferences and workshops all over the country. From strangers to whom I am now connected in gratitude and love.
I keep saying it: I wouldn't wish this on anyone, and yet I wish everyone could feel what it's like to be so loved and held in community. Thank you all for being a part of that!
If you'd still like to contribute, I'll stick the info below.
Much, much love, you wild, loving people in my life. I can't imagine it all without you.
LIVE INTO HOPE FUND
In 2018, Farm Church’s “Live into Hope” fund will support the costs of full salary and benefits for our Co-Planter, Pastor Ben Johnston-Krase, as he and his family face his cancer diagnosis.
As we learn what it means to truly “Live into Hope” during this difficult journey, we are hopeful that Ben will be able to be a full-time pastor to Farm Church for as long as he is willing. At the same time, this fund ensures that Ben and his family are fully protected throughout this process with adequate income and full benefits provided through the Presbyterian (USA) Board of Pensions, including health insurance, pension, and death & disability coverage. This budget also anticipates the likelihood that at some point Ben may need to activate disability benefits, in which case he would receive 60% of his base salary.
How to Give:
- Make a tax-deductible gift online to the Live into Hope Fund at www.farmchurch.org
- Mail a check (See note below!) made to Farm Church with “Live into Hope” on the memo line to:
c/o Trinity Avenue Presbyterian Church
927 West Trinity Avenue
Durham, NC 27701
NOTE: For accounting purposes, it is important that all checks are made out to “Farm Church” with “Live into Hope” in the memo line. Please do NOT put Ben’s name on them anywhere.
Other Ways to be Involved:
- Lift up Ben and his family in your prayers during this time of fear, hope, and waiting.
- Help us Identify other folks that might be called to support this ministry.
-Contact Carynne McIver Button with questions about donating or getting involved at email@example.com.
Two posts in one day from me – a rarity. But there’s more, and this is the harder one.
After I was diagnosed with lung cancer, my younger brother Ethan decided to go in for a check-up, just to make sure that everything was alright with him. A CT scan revealed a nodule in his lower right lung, and his team at Mayo Clinic have determined that it is cancer.
The good news is that they’ve caught it very early, and he’s scheduled for surgery to remove it on Monday of next week. From there they’ll be watching him like a hawk and staying ahead of any developments, should they arise.
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.
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.”
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.
Much, much love,
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.
PET Scan in a few minutes, friends. Once again, I'm bringing you with me. Thank you for all the support, love, grace, good words... All my life I've never felt so deeply connected and today that feeling will embolden me to lie still for 2 hours while a machine combs through my body to look for more signs of cancer. That's the more mundane reality right now. The sacred reality is that I am not alone - that I have this wide, wild network of lovely people who are holding me in the light, and this reality fuels me to hope and to fight. Thank you so much, friends. I hardly have words to say how grateful I am. Thank you.