A CANCER JOURNEY
Music leads Caleb Fagen through his journey with Hodgkin’s lymphoma
Published: February 2024
Music is huge a part of Caleb Fagen’s life — you could say he lives and breathes it. When the university student started to feel rundown in the summer of 2021, he thought he had been pushing himself too hard. Soon though, he was diagnosed with Hodgkin’s lymphoma. It was shocking news for this young man and his loved ones.
“I was completely unprepared when I heard the diagnosis. I was shocked.”— Caleb Fagen
Earlier that year, Caleb was attending uOttawa for his undergrad in music, he was teaching private music lessons and was a part of the school’s choir — something that brought him great joy.
“I was very focused on school. It was the hardest year of my undergrad, especially with the pandemic. I practiced three to four hours a day on the piano — I was working hard,” explains Caleb.
In addition to feeling rundown, he had also become anxious and depressed, and he wasn’t eating well.
“I was completely unprepared when I heard the diagnosis. I was shocked. I was so focused on school and music that all I wanted to know was how I was going to be able to practice, and how was school going to work?” remembers Caleb. “I didn’t want to lose the momentum that I gained.”
Shocking diagnosis of Hodgkin’s lymphoma
Hodgkin’s lymphoma begins in a patient’s lymphatic system — that’s part of the body’s germ-fighting immune system. The white blood cells grow abnormally and can form growths (tumours) throughout the body.
Once Caleb digested the news, there was acceptance. He credits a great deal of that to his incredible support system, including his parents, his brother, and his partner, Jane.
“My dad came to all my chemo treatments and took time off work to be there with me, and mom was a huge support. My partner lived with me through a lot of this too, it really helped, and it brought a lot more love to this scary situation.”
The first course of action was chemotherapy, and those treatments went from October to the end of March 2022. Caleb maintained some online courses during this period, and overall, he got through the treatment fairly well. That spring he travelled to Italy, resumed working, and even thought about plans to finish his degree.
A stem-cell transplant the next level of defence
By late summer of 2022, just one year after his initial diagnosis, a PET scan showed the disease was refractory. That means while it appeared Caleb initially responded to treatment, the cancer had returned.
The next step was a stem-cell transplant — a process that began in September. “It was quite an ordeal. I went through a few rounds of chemo, and then the stem cell collection. That was followed by the harsh conditioning chemo treatment to wipe my system clean. I felt like a walking zombie. I was very feeble,” explains Caleb.
“The team was really good. There was a time when I had to be an inpatient and I was treated well. They told me it would be difficult post-transplant, but it would get better.”— Caleb Fagen
It was Halloween when he received his stem-cell transplant. He credits his care team at The Ottawa Hospital for helping him through a very difficult period. “The team was really good. There was a time when I had to be an inpatient and I was treated well. They told me it would be difficult post-transplant, but it would get better.”
Caleb describes the following month as the worst of his life. “There were times in November when I lost my sense of taste. My tongue felt like it was a rock, it felt stiff and hard, and my appetite wasn’t good. That was just one example,” remembers Caleb. “It was a traumatizing time. I had a psychologist and support to help me work through things and to focus on breathing and to stay calm.”
Cancer and the mental health journey
The Cancer Centre’s psycho-social oncology program was established to provide patients like Caleb the support needed to help cope with the many challenges associated with cancer and its treatment.
One person who was an integral part of helping Caleb during this challenging time was social worker Izabela Uscinowicz Valdivia. “Isabela was terrific. I was with her since before my transplant. She was there during the really bad times. We developed a great relationship,” says Caleb.
He also credits his hematologists Dr. Manika Gupta, who started this journey with him, and Dr. David Macdonald, who currently cares for him.
Gradually, things started to improve for Caleb, but he admits it was a slow process. By December, he was regaining strength both mentally and physically, and he sat down to play again. “That was a great moment when I was able to start playing the piano. I missed it.”
Looking to the future
Because of the high risk of relapse, Caleb started a new chemo treatment in December, which occurred every three weeks and only ended on October 27, 2023. It was then that Caleb was able to ring the bell at the Cancer Centre to mark the end of his treatment.
Today, he’s back at school in-person part-time, with two more courses left to get his degree. He’s also writing music for himself and teaching again.
“Physically I feel a lot better. I want to start exercising more to build up my strength, but I’m in a better place. I’m still dealing with mental health issues. I have a counsellor, but I have fewer things to say, so that’s good,” Caleb says with a smile.
Now 23, Caleb’s recent scan showed he’s in remission, however, he continues to be monitored closely with an ultrasound and then another PET scan coming in the next six months. In the meantime, he’s making plans. He hopes to travel to Portugal in 2024, and long term, he wants to continue sharing his love of music with others by opening his own music school — a dream he hopes to see become a reality one day.
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.