A suburban mom’s fall on a hiking trail led to a metastatic cancer diagnosis, and an unexpected path through clinical trials, liver transplant, and discovering that advocacy is just as healing as it is transformative
Carole Motycka was living the dream.
She was a suburban mom with four kids, watching them grow into cool, independent humans. She was transitioning from the exhausting role of hands-on parenting into what she calls the “sidecar”—letting them drive while she got to do more of her own things. She was an active runner in the best shape of her life. She and her family were hiking.
Then she fell on a trail and thought she had a sore shoulder.
She went to the emergency room. And from a simple diagnosis of shoulder pain came a cascade of medical terminology that would reshape her entire existence: metastatic colorectal cancer, stage 4, prognosis of six months to live.
“My world that was seemingly normal gosh turned upside down in a hot second,” Caroline says. “And it really spiraled into honestly panic in some senses, grief, pain. There were so many sad things that I experienced right away.”
But what hit her hardest wasn’t just the diagnosis. It was the realization that she didn’t speak the language of oncology. She didn’t understand the words doctors were using. She had no framework for what was happening.
“I was crippled with how do I figure out what my steps are because I don’t know any of this,” she recalls.
That helplessness—that moment of standing at the bottom of a mountain you didn’t know you had to climb—became the catalyst for everything that followed.
The Language of Cancer: When Education Becomes Survival
Carole’s early response to her diagnosis was methodical and deeply Type A: she decided to learn.
She bought little pocket guides on how to advocate for herself. She googled obsessively. She did homework. She asked her oncologist endless questions. She tried to be 10 steps ahead of the disease, to control what was happening.
“I’m a type A person, so I wanted to be 10 steps ahead. And I quickly realized that that wasn’t the case, that it was a day-by-day process,” she admits.
But there was a problem with her solo approach: her brain was starving for something that facts and figures couldn’t provide. She needed to know that other people were surviving this. She needed to hear stories of hope. She needed witnesses to the possibility that life could continue after cancer.
That’s when she found Colon Talks, a community space within the Colon Club. She dove into the chats. She read other people’s stories. She learned that what she was experiencing was real, shared, and survivable.
“I learned so much from community,” she says. “And I think that really uplifted me and empowered me.”
That education took years. It wasn’t a two-week process. It was slow, sustained engagement with people who understood at a cellular level what she was going through.
“I needed both of those things,” she explains. “The medical side that I was digging into so much, trying to get myself so far ahead and have plans. And I really needed that balance of the community to help me understand that it could also pivot and things were okay.”
The Six-Month Sentence and the Pivot Nobody Expected
Twelve rounds of chemotherapy. A clinical trial with fifteen patients testing a new treatment called FUDR administered through a HAI pump inserted directly into her liver.
And then: acute liver failure.
The treatment that was supposed to save her life nearly killed her instead. She overdosed her liver. She developed an aneurysm in the Cleveland Clinic parking lot. There’s a gap in her memory from this period, she calls it “very gray”, because the trauma of it blurred the edges of what should have been distinct moments.
But she remembers two specific things.
The first is the image of her surgeon sitting on her hospital bed. He was a man who had always had “something in his back pocket” as an attempt to save her. A plan. A solution. A next step.
“And he said, ‘I’m out of things in my pocket,’” Caroline recalls. “He said, ‘I can’t give you chemo for your liver. I can’t save you at this point.’”
That admission, the moment when the thing supposed to save you admits defeat, would break most people. Caroline felt the weight of it.
But her surgeon wasn’t finished. He had one more thing. One last card he hadn’t played yet.
“He said, ‘I have an opportunity,’” Caroline remembers. He went through a process she didn’t understand. Translational research. Something from Norway. Details that meant nothing to her because she was drowning in the moment.
But he said she had a chance at life.
“I have four boys and I said immediately, I’m in,” she says. “It didn’t matter to me what it meant, what the details were. I knew that I wasn’t going to let my kids think I ever gave up on them.”
That day on the hospital bed was the day everything changed. She had no idea what was going to happen. She was agreeing to something she didn’t understand, with outcomes she couldn’t predict.
But she was all in.
One of the First: Finding a Liver Through Faith and Congregation
Carole was one of the first people in North America to receive a liver transplant after being diagnosed with metastatic colorectal cancer.
There was no list to consult. There were no guidelines. There was essentially one option: find a donor yourself.
“Here I am dying and now I have to find a liver too. I mean, this is a lot of work for me,” she says, with the dark humor of someone who’s survived the unsurvivable.
But her Type A personality that had worked against her in the early days of trying to “out-research” cancer became an asset in a completely different way. She had to take action. She had to find someone willing to give her part of their liver.
She worked at her church in Ohio as the youth director. She had raised her children there. She was part of that community’s fabric.
Her pastor offered a radical solution: put a note in the church bulletin asking if anyone would donate a liver to Caroline.
“I said to him, ‘I don’t think that’s the thing that you do with the bulletin,’” Caroline laughs. “And he said, ‘No, it’s fine.’”
It was fine. It was more than fine. It worked.
Her community rallied. The bulletin went out. And Caroline’s donor—Jason—saw the note and knew immediately that he was the person. He knew it the moment he read those words.
The medical team evaluated him as one of fifty potential donors. He was the sixth person they looked at closely. He was frustrated by the process because he already knew.
“He was right. He was the perfect match,” Caroline says.
She found her liver through faith. Through a congregation that showed up. Through a stranger who became family through an act of unselfishness.
Jason saved her life.
The Hardest Part: Surrendering Control in the Process
Being Type A through a liver transplant evaluation process is its own unique torture.
You want to know things. You want to understand the details. You want to be in control of which donor gets selected, when the surgery happens, what the timeline is.
But HIPAA restrictions mean you know almost nothing. Other people make the decisions. You have to trust their judgment. You have to surrender.
“On top of all the trauma that my family were going through, we had to really just lean into trust and lean into hope and lean into just knowing that this was going to be okay no matter what happened,” Carole says. “And I say that without... I say that really, I guess sort of flippantly. I don’t want people to think that wasn’t a hard job because that is extremely hard work.”
Especially when you’re someone who was trained to be 10 steps ahead.
“I had to advocate for myself in that space and say, ‘Okay, Caroline can do this much. I can control these things and everything else I’m going to have to allow other people to trust and count on their knowledge,’” she explains. “And that’s extremely hard and it takes a lot of work.”
After Transplant: The Unexpected Gift of Advocacy
Carole spent a year in acute care after her transplant.
When she came out of it, she faced a disorienting reality: life was going to be different forever. She couldn’t change that fact. But she was desperate to do something meaningful with it.
She started volunteering with Colon Club, showing up at Call on Congress events. She started engaging with Fight Colorectal Cancer’s policy and advocacy work.
And something unexpected happened: she started healing.
“Advocacy is helping change the trajectory for someone else because of what you experienced,” she says. “And for me, even if it was that sliver of a little bit, that was worth it. All I’d been through was worth it if I could make a difference and make change for someone else.”
It sounds noble, and it is. But there’s something deeper happening here—something Caroline would eventually articulate as one of the most healing dimensions of her work:
The realization that your story matters. That your survival means something beyond your own life.
Personal Advocacy vs. Organizational Advocacy: The Difference Between Member and Staff
A few years into her volunteer work, Carole was offered a position: community engagement manager at Fight Colorectal Cancer.
The shift from being an advocate telling her own story to being an advocate who collects and amplifies others’ stories is seismic.
“Advocacy is self,” Carole explains. “It’s telling your story, it’s using your voice to affect change for yourself.”
But organizational advocacy is different. It’s bigger. It’s about zooming out from your individual disease journey and looking at the entire landscape: prevention, early detection, treatment, survivorship.
“When you get involved in advocacy in an organization, it really broadens the perspective. You get to dive into a bigger space of prevention care and advocating for not just people who are facing disease or have been diagnosed with disease, but we really get to unpack in a bigger space all the way back,” Carole says.
She went from the church member to the church staff. From someone saying “I have cancer, help me understand this” to someone saying “I hear your story, and I’m going to connect your story to other stories, to data, to prevention efforts, to policy change.”
“I get to take people’s stories and put a face to data, put a face to diagnostics, put a face to preventative care, put a face to survivorship,” she says. “Without humanity, without people, none of it matters.”
That’s the power and the difference: she still tells her story. But now, she tells it alongside hundreds of others. Her transplant story becomes evidence for why prevention matters. Her struggle becomes context for why screening saves lives.
The Healing Dimension Nobody Talks About
Carole and I both mention something crucial that rarely gets discussed in advocacy spaces: how healing the work itself is.
It’s not just that Carole wanted to help others. It’s that by helping others, she helped herself.
“Advocacy and being a part of opportunities to share your story and to promote wellness for other people has this really healing ability,” Carole says. “It’s softened the load for me. It’s made me feel like I’ve been able to contribute to others and meet others.”
She’s now a 10-year survivor living with long-term effects from chemotherapy: neuropathy in her hands that developed years after treatment ended. Physical side effects that don’t go away.
But being part of community, talking to people who understand “ornately” (intricately, deeply) what she’s experienced, has healing power that medicine can’t provide.
“The people in my blue family, which are now many of them are my chosen family, understand what I’ve experienced at a whole different level than anybody else will ever,” she says. “I’m so grateful that they have helped heal me and continue to help heal me.”
The Magic Wand: One Change Above All Others
If barriers disappeared, if she had unlimited resources and could change one thing, what would Carole choose?
Prevention.
“If everything was off the table, that’s where I would go because that’s going to save lives is by screening, by diagnosis, early detection and getting those polyps out,” she says. “So that’s hands down preventative care.”
It’s the upstream version of her own story. She survived metastatic cancer through extraordinary medical innovation and transplant. But how many people could avoid that journey entirely if screening worked? If polyps were caught early? If colon cancer was prevented rather than treated?
That’s where her energy now goes.
Circle of Life: From Hopeless to Hope-Giver
Here’s what moves Carole about her journey: she started in a place of helplessness. A place of not knowing the language of cancer. A place of feeling like she had six months to live.
“And then now with my work, I get to not tell my story as much, but I still have my story there,” she says. “But I get to hear people’s stories now who are sitting in the place where I was back 10 years ago. And I get to learn how to connect them and figure out where they need to have support.”
It’s a full circle. The person who was lost found community. Now she helps others find community. The person who needed hope now gives it.
“I really am so proud that now I get to give hope in a place where I felt hopeless and know that it makes a difference,” she says.
That’s not just advocacy. That’s transformation.
Connect With Carole
If you want to reach Carole or learn more:
Social Media: Facebook, Instagram, Twitter/X — Find Carole there
Fight Colorectal Cancer: fightcrc.org — Visit their website and use their chatbot
Email Carole: caroline@fightcrc.org
Read Her Writing: Check out Carole’s article on Fight CRC’s blog about survivorship and advocacy
Final Thoughts
Carole Motycka survived metastatic colorectal cancer. She survived acute liver failure. She received a liver transplant from a stranger who became family through an act of faith and generosity.
Ten years later, she’s still here. Not just surviving, but thriving. Living with the long-term effects of chemotherapy and the reality of being a transplant recipient, yet finding healing through the work of advocacy.
Her story is a reminder that surviving cancer is only the beginning. The real work, the transformative work, happens when survivors turn around and help the people coming behind them.
It happens in community. In connection. In the decision to take your story and use it to change the trajectory for someone else.
Carole did that. And in doing so, she found that advocacy heals the healer as much as it helps the patient.
Are you struggling with a colorectal cancer diagnosis or survivorship? Reach out to Fight Colorectal Cancer. Are you a survivor looking for community? Join Community of Champions. Your story matters. And your healing, like Caroline’s, might start the moment you decide to share it.
