Ule Alexander was putting in the work and had his life in order. On the advice of a doctor, he had had a gastric bypass to lose weight, and it was working. He was eating right and spending more days than not in the gym. He was married and working as a chef and cooking instructor. It was his dream career. One that had taken him abroad to Egypt, Saudi Arabia and Dubai, where he trained steakhouse chefs and even cooked for Saudi royalty.
The symptoms began with a stitch in his side. A feeling, especially on walks, that he had a slight cramp. Ule thought nothing of it at first. As time went by the cramps came up more often until they were happening consistently through the day. No one really had a clue what could be causing it. Guesses ranged from gall bladder issues to recurring gas due to acid reflux.
Ule had an episode at work where, after a great deal of stomach distress, he noticed what seemed like a great deal of blood. While not dismissing the occurrence, he promised himself that if it happened again, he would go to the doctor. The blood would not reappear, but the cramps worsened, and he wound up in the emergency room where scans would show a mass the size of a small ball in his lower colon.
The gastroenterologist he then met with mentioned a possibility of cancer but also told him what many early age onset colorectal cancer patients hear, “You’re way too young for this to be cancer.”
A few days later, while meeting with the surgeon, he found out not only was he not too young for colorectal cancer, but his cancer was advanced. The cancer had spread to his liver and lungs.
It was August 26, 2015. He was a stage IV colorectal cancer patient at the age of 35 and he didn’t know if he would live to be 40.
Despite the seriousness of a cancer diagnosis, the first part seems like a lot of “hurry up and wait,” while a team of doctors prepare the plan of attack. This can include chemotherapy and radiation to shrink the cancer prior to surgery, but in Ule’s case the surgery would be almost immediately.
One of the nefarious aspects of cancer is the collateral damage of stress and worry to family and caregivers, and for some people this becomes too much. Ule’s marriage would end later that year and others in his life became distant. The mistake he admits making at that time, was further isolating himself and not reaching out for support.
Depression would follow and Ule would go through what he called a dark time. Through this time, he fell back on his love of worship music. A song by Jenn Johnson, “You’re Gonna Be OK,” became his mantra. It was the first thing he listened to in the morning and was played on a loop on his way to work or treatment.
That mantra would carry him through liver ablations, a right lung lobectomy, a VATS resection of his left lung and a significant liver resection, where nearly half of his liver was removed.
As an advocate, Ule’s focus is being the person for someone else that he would have needed but could not find. He wants to be a voice in the African American and minority communities to try to dispel some of the stigmas and taboos around colorectal cancer, reinforcing knowledge of a family history and being a self-advocate. While he participates in various social and support communities, he prefers to be more personal. As a result, he keeps tabs on several cancer patients across the country. They talk on the phone and Ule makes sure while checking on their health and scans to check on the rest of their lives as well. He stresses the importance of imparting to other survivors that their lives are more than cancer.
These days, the chef who wasn’t sure he would ever see the age of 40 is 42. As of last December, his scans were clear, and he is now NED (No Evidence of Disease) but remains on an oral chemo with regular scans.
He has a new girlfriend, a steady job as a chef, and advocates and outreaches to others. It’s a rather good recipe for life.