This post is a reprint from Daniel Kolen’s Substack page called: Love Disease Out of Existence. (Feb 14, 2025). Daniel Kolen is Amy Kolen’s son. Amy Kolen is the author of the Emerging Voices post Inside Voices: A Prison Choir, my Mother, and Me.Daniel Kolen is a filmmaker who has captured the Oakdale Community Choir in a documentary called Inside Singers.
Valentine’s Day 2024—I was going in for my second round of R-CHOP chemotherapy, hoping it would go much smoother than round one when I had an allergic reaction to the first chemo medication they tried on me. They ended up being able to administer it to me at a slower pace, but the first round took around 12 hours. A few days after round one ended, my distance vision blurred to the point where I could barely make out the words on a screen a foot from my face, and I spent a long night in the ER, finding out the next day it was the anti-nausea meds that caused my eyesight to fail. After round one, I also had difficulty eating, losing more than 10 pounds in a single week. My face was gaunt. I was full of terror and fear. That was round one.
After making some significant adjustments, including swapping out the anti-nausea meds, I mostly bounced back from the late January chemo, the eyesight issue, and the weight loss. On Valentine’s Day 2024 I’d brought some chocolate caramels I received in a care package from a friend and Valentine’s Day cards, like the ones you’d dole out in elementary school, and gave them to the doctors, nurse practitioners, and nurses at Northwestern University’s chemo ward.
But now on Valentine’s Day 2025, I want to go back to when I came across the phrase, “love the cancer out of existence,” describe how it has served me during those months of chemo and beyond, and show why I want to universalize it to “Love Disease Out of Existence.”
It was in early January 2024 after I found out the full picture of my cancer diagnosis. It wasn’t just one type of lymphoma. It was two. The Non-Hodgkin’s Lymphoma had transformed from the Hodgkin’s Lymphoma. After transforming, the Non-Hodgkin’s had spread throughout my body into my organs, lymph nodes, and bones. The Hodgkin’s Lymphoma was likely just in my lymph nodes. I was determined to do everything I could to treat this health crisis.
“I’m going to fight it, and I’m going to win,” I was supposed to say in the early days. “I’m a fierce fighter and tough as nails (and let’s add tough as land mines, machine guns, and atom bombs while we’re at it),” I felt pressured to feel. The cancer and war metaphors were repeated over and over again, part of our cultural lexicon. It’s just the kind of thing you say: “I’m going to war against my cancer. I’m armed with my bayonet. My football pads. My armor. My knight’s sword. I’m tough. I’m ready for anything. Grrrrr. I’m the meanest cancer fighter everrrrrrrr!”
But the popular language about Cancer Wars felt false to me. I explained my predicament to Marie, a gifted energy healer who had been working on leading me through meditations that got me through the Behcet’s flare-from-hell and now, through the intensity of chemo.
“I’m gonna fight, I guess, but I just don’t like war metaphors, Marie. What do I do? The language we use to talk about this stuff sucks,” I said on one our healing calls between the diagnosis and starting chemo. “The cancer is like a part of me. It feels like by saying I’m going to fight, I’m supposed to be going to war with a part of myself. I don’t want to go to war with myself, and war metaphors are the last thing I energetically want as I head into cancer treatment.”
“Daniel, yes, the cancer is a part of you right now,” she said.
“Okay, so how do you think I should phrase it?”
“Think about it as loving the cancer out of existence,” Marie said. I breathed the phrase in and then out. “How does that feel?”
I sat there on the other line of the phone momentarily speechless and collected my thoughts. “It feels right,” I said breathing in. I exhaled and said, “Ya, it feels good.”
Repeating the phrase “loving the cancer out of existence” like a mantra, really feeling it was essential getting through chemo. It transmuted the pain and chaos of the disease when I was in my darkest moments. It turned the experience of getting cancer into an act of giving and receiving love. It brought me to a place where I was dispelling isolation and committing to interconnection. It moved me from fight, flight, or freeze to connect, embrace, and act. It was a great way to talk with friends and family. It’s a phrase signifying collaboration, gratitude, and the most positive forms of connection.
AgArts Farm-to-Artist Video, Daniel Kolen videographer.
It was also a reminder that I wasn’t in the dark, scared and angry, as I fought an effectively invisible foe. Instead, I was in the light—connected with everyone who was praying, meditating, thinking of me, and sending warm, beautiful messages.
Loving the cancer out of existence was the 11 family members and friends who stayed with the dogs and me during the six rounds of chemo—most of whom flew in from out of town, taking turns so I was never alone during the week of chemo, the week after, and beyond. Loving the cancer out of existence was the meals people cooked for me and delivered. It was the care packages. It was the support sent with funds, food, and warm socks. To give a shout out to everyone individually here who helped would be a massive undertaking, but just know I felt it. The connections made and sent were immensely powerful, and it got me through those impossibly challenging and what should’ve been the darkest few months. Love came in many forms.
Connecting with loved ones started as email and text threads, but once that became too cumbersome, I turned to a Caring Bridge. From there, the love and support really started to come in.
To love is infinitely different than to fight. It feels different. I didn’t need weapons. I needed a blanket, a box of tea, and a disco ball. Yes, the disco ball I received in one of my care packages still hangs up in my living room. Now when the early morning sun comes in, it reflects the light in the coolest way, giving my piano, couch, and coffee table an angelic glow.
But my experience, this collaboration with loving something terrible out of existence, goes beyond cancer. The framing can apply to all disease. For me “loving disease out of existence” also pertains to the genetic disorder Behcet’s that I have, and all the outcroppings of disease that spring from it—the at-times debilitating skin, eye, joint, fatigue, digestive, and ulcer issues, among others. Even if I’m lucky and the lymphoma stays in remission, Behcet’s is a constant managing and balancing of keeping immune, physical, and emotional stress levels at bay to avoid a flare.
Incorporating self-love, rest, help when needed, and calm is a major way of taking care of my long-term health. Bringing in support from others as needed is essential for me to keep this disease at bay too.
I’m writing this so people can reframe whatever illness they or their friend or family member is facing. Consider approaching the disease as an opportunity to receive and give love. I think this framing could be universal, transcending well beyond cancer. Facing an illness doesn’t need to be about a battle, about conquering a demon, about slaying a dragon—it’s about saying “yes” to the love that will come to you when you ask for it. And it’s about giving love to those in your circle who need it.
So lay down that battle axe. Remove that armor. Breathe. Lean into interconnection, support, and love for yourself, love for those in your life who mean the world to you. That’s what I mean when I title this, “Love Disease Out of Existence.”
Bio:
Daniel Kolen is an Iowa-born writer/filmmaker who describes his medical journey with cancer and autoimmune disease in Love Disease Out of Existence. His film/tv work has appeared on Showtime, History, and PBS. He recently completed the documentary THE INSIDE SINGERS, telling the story of an Iowa prison choir.
Beautiful! Thank you, Daniel. Just the loving wisdom I (and so many of us) need to hear.
Just what I needed to hear/read (and resonate with) today, tomorrow, tomorrow, ... and tomorrow! Thank you! 🙏🏼🫱🏼🫲🏽