WESTWOOD, Kan. — Nurses learn a lot in school and a lot more on the job. But it’s impossible to teach what Lindsay Norris learned from a surprise cancer diagnosis.
“I think at some point I almost just smile because I can’t even believe that happened to me,” Norris said. “It seems like such a shock that that was even my existence for a while.”
Today Norris uses her perspective from both sides of the chemo port to do more than raise awareness; she is helping doctors, nurses and everyone else better understand life with cancer.
Norris was diagnosed at age 33. She had just given birth to her second child. She and her doctors mistook the first signs of stage three colorectal cancer as postpartum symptoms. After four months, her doctor suggested she see a colorectal surgeon.
“He was able to tell me that day that he found a mass,” Norris remembered. “To be thrown into this world that I live in already — now as a patient instead of a nurse — was definitely eye-opening.”
As an oncology nurse, Norris knew what treatments and procedures to expect. But until then, she didn’t totally understand the constant emotional and psychological stress that comes with a cancer diagnosis.
“I didn’t realize how all-encompassing this diagnosis is,” Norris said. “Life stops for this.”
As Norris started radiation and chemotherapy, she couldn’t stop thinking about all her cancer patients. She described feeling “nurse guilt.”
“I just kept wondering if I had done enough. Did I say the wrong thing? Did I upset them? Did I make them feel trivialized?” Norris said.
Guilt led Norris to post an apology letter on her blog titled, “Dear Every Cancer Patient I Ever Took Care Of, I’m Sorry. I Didn’t Get It.” It’s raw, vulnerable, and heartfelt. It hones in on things even a person who works with cancer patients might not understand, like how friends change how they act around you, or the notion of “bravery” during treatment.
The letter struck a chord with patients. People wrote to Norris and even visited her at work to say thanks.
“Some people said that they had never been so heard, and that they were able to share it with their friends and family and now those family members understand what it feels like to go through this,” Norris said.
Norris kept blogging about her treatment. Six weeks of combined radiation and oral chemotherapy shrank her tumor. Surgeons removed the bottom part of her colon, including the rectum and anus. Norris got a permanent colostomy bag, then endured IV chemotherapy — all with an infant and toddler at home.
“We had birthday parties and we had daycare and activities. It was getting to the point where I had a hard time carrying the car seat up the stairs to get inside,” Norris recalled. “I was just in survivor mode.”
Through her blog, Norris was becoming an advocate for a sadly growing population: young colon cancer patients.
“I know that as a newly diagnosed patient, I was craving some of those stories,” Norris said. “I was tired of seeing cancer as an old person’s disease. Of course that population deserves all the care, too. But I just felt like the under-50 group was really under serviced and didn’t have as much of a voice in the cancer community as it should.”
Norris has been cancer-free for three years now. But her survival story taught her that cancer doesn’t end. Survivors have their own struggles, like the pressure to make the most out of their “second chance.”
“You don’t have to go off an win a Nobel Prize, or be the perfect person, or always have a clean kitchen,” Norris said.
Instead, Norris is looking forward to her next milestone: 5 years cancer free. She says for her, it’s important to take it one day at a time.
Norris is also building empathy among her colleagues as a nurse educator and nurse coordinator for the University of Kansas Cancer Center. Her advocacy earned her national nurse of the year awards from the American Nurses Credentialing Center and Press Ganey, a patient survey company.
“I’m proud of some of the message I’ve been able to get out,” Norris said. “To reach so many people with some of the things I’ve written, and for that to get some attention, is really humbling and really exciting.”