Pump Boys and Dinettes
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.
Living Into Hope
November 30th, 2017
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.
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.
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...
(Posted initially on Facebook in November of 2017. This is how most people in my world found out about my cancer diagnosis.)
I can hardly believe I am writing these words to you. I have discovered this week that I have cancer. What kind, what stage, how severe – answers to these questions will come to light in the coming days. For now, though, what I know is that I have a mass in my right lung about the size of an egg, several more much smaller masses in my lungs, and a mass on my thyroid. Preliminary conversations with my doctor lead me to believe that I’m in for some major surgeries soon with chemo and radiation to follow, but of course we’ll see as things unfold. I am, of course, stunned. Karla, the girls, and I are coping as best we can – taking in news as it comes, crying, hoping, walking, playing, trying to get good sleep…
A few things I want to say to you at this point…
I hope you understand how much I regret breaking this news to you in this way. (For crying out loud, I am sharing that I have cancer on Facebook.) For a while I sort of imagined that I’d take my time to make calls and let people know, one by one, but to be honest, that would about break me. What’s become clear to me is that I need to let it out with the basic information and then respond as I am able or when we see each other next. It breaks my heart to share this news in any form, but I know you understand when I say that it is taking absolutely all of my energy and bandwidth to be present to my situation, Karla, and the girls.
I have always known that while life is a wonderful gift, it is not fair. Its unfairness is the thing that causes some to shrink back, to love reservedly, to trust less… But that same unfairness pushes us to live well, too – to trust, risk, dream, act, sing out… So in light of this very particular unfairness, I have a profound sense of gratitude that I am in a place where I can say that I am living well. In a myriad of amazing ways, so many of you have been a part of that, and I cannot say how grateful I am.
Karla and I are feeling viciously protective of Sylvia, Meheret, and Ezzy right now. We have told them everything and we have also nurtured hope in our home. I trust that you will join us in that hope with them, and to that end, I want to be clear: the space around my family needs to be a "no-crappy-theology-zone." Things like "Everything happens for a reason," “All part of God’s plan,” and "God won't give us more than we can handle" may be helpful for some, but I would prefer not to inflict them on my girls. Thanks for your help with this.
Finally, I believe now that the Sacred Source of the Universe, God, who I have come to name and respond to in Jesus Christ – this Source is sad, mad, and broken with me, but also courageous, hopeful, healing, and still calling. So on I go. Stuck in a free-fall right now, but still dreaming, still striving to live in light of that Presence. Thank you for your prayers and for sharing this load with me and my family in your own ways. I am grateful for you and grateful to be journeying with you now.
Much, much love, with admiration and wonder,
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.