FARGO — People close to Rachel Ellingson describe universally her kindness, sense of adventure and infectious laugh, as well as her caring and curious nature.
The 33-year-old, a graduate of Shanley High School and the University of North Dakota, was tight with family and had a wide circle of friends. An attorney working in New York City and engaged to a British man, her longtime love, Ellingson was living her best life.
When the symptoms started, she pushed them to the back of her mind. Doctors told her not to worry because that kind of cancer doesn’t often affect people her age.
Her mother, Pat Monson, said Rachel didn’t mention it to her, or others. “If somebody doesn’t tell you you’re sick, you certainly don’t want to tell yourself you’re sick,” Monson said.
But when Ellingson was diagnosed with stage IV colorectal cancer in October 2015, it had already spread. The cancer, often cured if caught early, would claim her a little more than three years later, on Jan. 6, 2019, at age 36.
Her death is part of an alarming trend. Cases of "young-onset" colorectal cancer have risen by 51 percent over the last 25 years, according to the National Cancer Institute.
Monson and husband Eric Monson have set up a fund through Dakota Medical Foundation. They took out a full-page ad in The Forum recently to publicize the effort, called "Live Like Rach," aimed at saving the lives of young people from colorectal cancer.
Pat Monson said prior to the diagnosis, her daughter had been experiencing significant changes in bowel habits — constipation, diarrhea and bleeding from the rectum — but it’s unclear for how long.
When the symptoms persisted, Ellingson finally saw a gastroenterologist.
By then, the tumor was so large, it was discovered through a simple rectal exam. A biopsy showed the tumor was malignant, and scans done the next day revealed cancer was also in her liver and lungs.
The first oncologist Ellingson saw rubbed her the wrong way.
In a blog she kept to chronicle her journey, she explained how the doctor combed through her hair to see how chemotherapy might affect it. He also belittled her request to undergo fertility preservation, or harvesting of her eggs before starting chemotherapy.
She and her husband wanted children someday. The doctor told her she probably shouldn’t be concerned with family planning at the time.
After that, she connected with Dr. Andrea Cercek at the renowned Memorial Sloan Kettering (MSK) Cancer Center in New York City. In her blog, Ellingson called Dr. Cercek "my saving grace."
The dramatic rise in colorectal cancer in young adults has prompted some of the nation’s premiere cancer centers, including MSK and the Dana-Farber Cancer Institute, to set up specialized programs. Their "young-onset" colorectal cancer centers focus specifically on diagnosing, treating and researching patients under age 50.
Last year, the American Cancer Society approved new recommendations for colorectal screening, in light of the disease trending younger. It said screening for people at average risk should begin at age 45, instead of the previous recommendation of age 50.
Even so, that guideline wouldn’t have saved Rachel Ellingson. That means people need to pay attention to their bodies, and tell a parent, a friend or a doctor what they’re experiencing, Pat Monson said.
Her husband said those are not easy conversations for people not used to talking about bodily functions.
“For the Scandanavian-German combination here, this is a little bit too much out in the open. But I think it’s necessary to bring attention to both the medical community and individuals,” Eric Monson said.
Their dream wedding
The campaign is called "Live Like Rach" because her daughter always "went big" in life, Pat Monson said.
Even after the difficult cancer diagnosis and surgeries and treatments that followed, Ellingson and husband Daniel Dean pulled off their dream wedding in New Orleans.
In a traditional French Quarter "second line" parade, a brass band led the couple and their guests from the wedding ceremony to the reception venue. People were standing on the sidewalks and hanging off balconies, taking pictures, Monson said.
Ellingson was always up for an adventure, whether it was a day trip or traveling to another country, wrote her good friend Christina Xenides in a "Tribute to Rachie" after her death.
“She wasn’t just a person, she was a force,” Monson said.
Now, Monson is on a mission to compel others to pay attention to the signs of colorectal cancer, so they don’t suffer the same fate as her daughter.
“There are ways to beat this, and we’re going to get there,” she said.
Anyone interested in donating to the fund or learning more about it can call 701-271-0263 or visit https://impactgiveback.org/app/#/charity/1088