How many people can truthfully say that cancer was one of the best things that ever happened to them?
Certainly, nobody wants cancer, and no one is happy when it occurs. But for Jose Santos, a 40-year-old software engineer from Chicago, Stage 3 colorectal cancer was not just a “blessing in disguise,” as he puts it, but it completely changed his life in positive ways he never could have imagined decades earlier.
In essence, Santos, having endured long and tough treatment, including the removal of his colon, has a new life — a life he thought was impossible for him. And he’s looking forward to celebrating that life this coming New Year’s Day when he proudly rides the City of Hope float in the annual Tournament of Roses Parade in Pasadena, California.
“What an honor,” he said of his parade invitation. “I’m super excited!”
His cancer journey began many years before his 2022 diagnosis. Back in 2006, when he was in his twenties, Santos was stricken with ulcerative colitis (UC), an autoimmune disease that causes inflammation and sores in the digestive tract. The symptoms of UC — abdominal pain, cramping, bleeding, constant urgency to empty one’s bowels but an inability to do so — can completely disrupt normal daily life, and for 16 years, that’s what happened.
“It was never under control,” he remembered. “My life was very much affected. I was down. I saw no way out.”
People with UC carry a sixfold higher risk of developing colorectal cancer. It is believed that chronic inflammation damages the colon lining, affects DNA and ultimately increases the number of mutations that promote tumor growth.
Stage 3 Colorectal Cancer Not a Surprise for Santos
So it was not a total surprise when Santos received his cancer diagnosis, even at the still-young age of 37. (While colon cancer typically strikes older people, there has been an increase in cases among younger patients, and the recommended age for colon cancer screening has been lowered from 50 to 45.)
What may have been a bigger surprise, at least for his doctors, was Santos’ appearance at the time, the result of all those years of suffering from UC.
“He looked like this very sick kid,” recalled oncologist Laura Farrington, D.O., assistant clinical professor in the Department of Medical Oncology & Therapeutics Research at City of Hope Cancer Center Chicago. “He was thin, emaciated, in a wheelchair. He seemed so young. And so scared.”
He was very scared.
“You hear the ‘c’ word and right away you start thinking, ‘Am I going to die?’” he said.
But from the start, Santos says Dr. Farrington eased his mind.
“She was very upfront about my prognosis,” he said. “She said her goal was to cure me 100%. That gave me hope to fight. And it changed my mindset completely!”
One-hundred percent cured?
Yes, said Dr. Farrington emphatically.
“That’s the goal,” she explained. “We want to make this cancer go away completely and stay away forever.”
It would not be easy. The tumors needed to be reduced before surgery could even be attempted. Starting in March 2022, Santos received chemotherapy — intravenous oxaliplatin plus Xeloda pills — followed by several weeks of radiation. Surgery was scheduled for September, and Santos’ medical team made a pivotal decision.
Standard treatment for Stage 3 is removal of the diseased portion of the colon and connecting the healthy parts together, maintaining normal bowel function. But Santos’ doctors decided to remove his entire colon. It would require fitting Santos with an ileostomy — routing the end of his small intestine through an opening in his abdomen and attaching a pouch to collect waste. It would mean a major lifestyle change — learning to cope with his new “plumbing” — but it was hoped this would also end his 16 years of autoimmune-induced suffering: no colon, no colitis.
“A lot of patients wouldn’t need this,” explained Dr. Farrington. “But in his case, I’m glad we did it.”
The six-hour procedure (“the most mentally hard part of all this,” Santos said) delivered on all counts. More than two years later, Santos has no evidence of disease. (Dr. Farrington won’t call him “cured” just yet. “He’s on his way,” she said.) He adapted quickly to the ileostomy and has no dietary restrictions. And his colitis is gone. As a result, he is now stronger and healthier than he’s been in nearly 20 years. And he’s taking advantage of it.
Stronger After His Ileostomy
“I’m doing all the things I couldn’t do when I was sick,” he said happily. “I can travel now. I’d been playing tennis since I was 6,” but UC forced him to stop. “Now I’m playing again. I had become so used to being sick, and now I’m healthy. Cancer cured me of my UC.”
All of this has astounded and delighted his City of Hope doctors, some of whom have known Santos for a very long time. His father has worked at the Chicago facility for three decades, and many on the staff have watched young Jose grow up — and they know how weak and ill he often appeared.
“What a dramatic, positive change,” said Dr. Farrington. “From this skinny kid to this robust man. We all see this huge transformation. Now he finally gets to live his life.” It’s inspiring, she said. “He had advanced disease. He got through the treatment, and now he has a better quality of life than he ever had before.”
And when Santos climbs aboard that City of Hope float this Jan. 1, Dr. Farrington plans to be right there with him. Both have reason to celebrate.
“It’ll be my first time,” said a smiling Dr. Farrington. “Totally outside my normal realm.” She wants to show how proud she is of her patient and the people who took care of him.
“We have this robust, multidisciplinary team. We’re all in the same building, and we’re all on the same page. So to have things turn out so well — you just wish it was like that everywhere.”
Santos can’t wait.
“It’s going to be so emotional” seeing Dr. Farrington there, he said. “A full circle moment, reminding me how special she is. She’s a guardian angel.”
Not long ago, Santos wrote a letter to himself. To that sickly kid suffering every day. He offered reassurance:
“You will traverse the biggest storm of your life. But storms are not meant to last forever. And so when the winds have calmed and the skies have cleared, your life will suddenly make sense.
“You will beat cancer and you will get a second chance at life. It will be a rebirth of sorts, like the phoenix rising from the ashes. Your unrealized dreams will become a reality and you will finally get to live the way you had always imagined life. An old chapter will close and a new one will open, its pages empty and ready to be filled with memorable life experiences.
“Always look forward and never give up."