“Cancer is a beast of a disease. It runs your energy tank down to well past empty, causes you to feel like crap, and makes you lose your hair all at the same time. Utterly relentless.” —Kelly Rodenberg, There’s Something Going on Upstairs.
Utterly relentless is how Rodenberg describes her cancer. But it’s also how one can describe her dedication to optimism and strong faith.
Diagnosed in October 2019 with glioblastoma, an aggressive form of brain cancer, she decided to chronicle her journey in a humorous and, at times, faith-filled book, There’s Something Going On Upstairs. “The more that I wrote and saw a story coming together and realized this is not only helping me, but others, by gosh it made me want to get up and write more,” Rodenberg says. “It was my saving grace in a very dark time.”
Farm Girl at Heart
Rodenberg’s diagnosis hit several years after her husband, Bob, had beaten POEMS syndrome. The Chaska resident found it shocking to now be facing her own journey. Her book touches on what it is like being a caregiver, who is now a patient. She also lovingly details her childhood on a farm and describes how she used the lessons of hard work and determination to make it through her treatment. Rodenberg also credits the community at Lord of Life Lutheran Church in Maple Grove, as well as her faith, family and laughter in lighting her way.
The book takes the reader through every step of her journey, which Rodenberg outlines as a series of miracles—the little coincidences that got her in early to see a doctor, a helpful nurse who made a suggestion to go to TRIA, a doctor at TRIA who told her to go for an MRI, her husband’s oncologist at the Mayo Clinic who went out of her way to refer her to a fellow Mayo neurologist for a second opinion.
Through a series of other events, Rodenberg found herself quickly being operated on—within three weeks of symptoms appearing. Her surgeon at the Mayo Clinic removed 95 percent of the tumor. She then went through several rounds of chemotherapy and radiation that ended in late 2019. She is now in remission, but glioblastoma is a particularly difficult type of tumor.
Why Not Me?
“Regrowth is a new and ever-present bullet to dodge … While the surgeon did his best to remove the tumor that’s visible, there is still no clear-cut cure. It’s a terminal disease that I hope to beat … While this glioblastoma is definitely a piece of me, it will never define me,” Rodenberg writes in her book.
Instead of cancer defining her, Rodenberg prides herself on focusing on living life. “You kind of feel like you have a monkey sitting on your shoulder,” she says. “I don’t have the safe feeling that I had prior to this diagnosis … I had made a point of trying not to ask, ‘Why me?’ It’s very easy to, don’t get me wrong. But, ‘Why not me?’ It could happen to anybody. Everybody has their stuff as far as I’m concerned. I realized early on, I can’t stay stuck in a dark place.”
Learning to Let Go
“If you’ve ever been under the impression that there was only one of us battling this disease, you’re sorely mistaken,” Rodenberg writes in her book. “Just because I’ve been a caregiver before doesn’t mean that it has prepared me for being the caregivee now. It’s hard to require help; it’s hard to ask for help. From a young age, we’re taught how to do things on our own, to be independent. The instant the pendulum swings to the other side again, we feel really vulnerable. The upside to all this is that Bob and I have walked similar paths. Bob knows exactly what it’s like to be knocked to your knees by chemo, have zero energy, surrender to a fickle appetite and be fearful of reoccurrences. I don’t expect needing help to get any easier, but I am learning my limits and learning to let go.”
The book straddles a delicate balance of cancer from the point of view of a caregiver and patient. Rodenberg offers suggestions on how friends and family can support caregivers and patients, from purchasing gift cards to gas stations, Visa gift cards to help with co-pays and hotel stays, cooking meals and more. “Everyone wants to help, but few know what to do,” she says.
There is also a section for friends and family about what to say and not to say to someone who is undergoing treatment. It’s these sections and Rodenberg’s candid grace that has won her endorsements from the Mayo Clinic, CaringBridge, Caregiver Action Network and the Musella Foundation for Brain Tumor Research.
The Hand We’re Dealt
“I didn’t volunteer for this role; I was chosen. I hope to defy the odds,” Rodenberg writes in her book. “For every sister or brother who joins me on this journey, it’s not about how hard we fall; it’s about standing back up … Optimism is a great healer and definitely the place where terminal illness will lose. While we have no control over the hand we’re dealt, we do have control over how we react to it.”
Rodenberg travels the Twin Cities with her book and speaks at churches, retirement homes and assisted living facilities. “It’s so humbling to hear how people are relating to the book,” she says. “People say, ‘I’m so glad you told this side of it,’ whether it’s the patient side or the caregiver side. You don’t know what your closest friend and family are going through, say nothing about those walking down the street. You have to give yourself grace and give them grace.”