Apr 11, 2019
Tom Bajoras says he’s written some of his best music during nights when pain kept him from sleeping. Bajoras has been playing and writing music since he was a child, and he’s found the creative process helpful during treatment for a pancreatic neuroendocrine tumor (NET).
“Often, I sat awake all night because of the pain, but I could still write music,” said Bajoras. “It didn’t make the pain go away, but it did make the pain seem less important. A lot of times after sleeping a little in the morning I would listen to what I’d written the night before, and I was surprised by the beauty of it. It didn’t sound like music written by someone in pain; it sounded like music offered as a gift to comfort someone in pain.”
He’s since completed an album he hopes will bring comfort to others who are suffering, to show them that beauty can be found even in the darkest circumstances.
Bajoras began feeling sick in early December 2014, just after his 54th birthday. He was tired and dizzy and felt like he had the flu. His wife Lisa, a nurse practitioner at a nearby hospital in Los Angeles, brought him to the hospital where he was admitted.
The medical staff found that Bajoras was bleeding internally. Tests to find the cause of the bleeding showed masses in his pancreas, liver, and spleen. He was diagnosed with NET, a type of cancer that starts in the pancreas. Less than 2% of pancreatic cancers are NETs. Before Bajoras could begin cancer treatment, he underwent surgery to stop the bleeding.
Bajoras went home to recover, then later returned to the hospital for another surgery, which led to the removal of his spleen, gallbladder, half his pancreas, and a large portion of his liver. However, within 2 months, new tumors appeared in his liver.
Bajoras then began monthly injections of lanreotide (Somatuline Depot), which stops tumors from releasing hormones into the bloodstream, and can help slow the growth of NET cells. But Bajoras’ tumors continued to grow. During the next 6 months, he had 2 radiofrequency ablation (RFA) treatments, but the tumors continued to multiply. RFA uses high-energy waves to heat the tumors and destroy cancer cells. “I felt like I should have a frequent flier card because I was going to the hospital so often,” said Bajoras.
In 2016, Bajoras traveled to Houston, Texas to try peptide receptor radionuclide therapy (PRRT) with Lutathera (lutetium or Lu-177 dotatate). In PRRT, a drug containing a radioactive element is injected into a vein, travels throughout the body, and gives off radiation to kill the tumor. During that year he had 4 cycles of PRRT.
In early 2017, a scan showed Bajoras was in complete remission, meaning he had a complete response to the treatments. He no longer had any evidence of cancer in his body. He and Lisa celebrated with a trip to Mexico to explore the Mayan ruins.
Current situation: ‘It’s complicated’
Bajoras continues to have regular MRIs and Gallium-68 scans, a type of PET scan that uses radioactivity to detect NETs. In September 2018, a scan found small lesions on his spine and he started monthly lanreotide injections again. Bajoras explains that even though his scans still show no evidence of disease, they picked up something that indicates the cancer is progressing and that means his future is unclear. “It’s complicated,” said Bajoras. “Things are not headed in the right direction.”
He’s also still struggling with pain. Bajoras works with a pain management specialist and physical therapist to keep it under control. One of his tools is a spreadsheet to track his pain levels, so when he’s having a bad day he can see on paper that it’s part of a trend he can manage. He says another help is the ability to find beauty in his surroundings. One day, as he and Lisa were taking a walk, he noticed a flower. “I said to Lisa, ‘Look at that flower! It’s amazing!’ It was a common kind of flower I’d probably seen a thousand times before, but this time it really did look amazing. “In this moment I realized that even on the worst of days I could find at least one beautiful thing to be thankful for.”
“The irony is I didn’t know the future before I had cancer either, but now I’m just more aware of that,” said Bajoras. “There’s been a good deal of wrestling with existential questions like, ‘How much time do I have?’ and, ‘What should I do with this time?’ I’ve come to the conclusion that the reason I’m on this earth is to make beautiful things and to make things beautiful. Nothing else brings me as much joy. Over the last couple of years, despite the suffering, I’ve written some of what I think is the best music I’ve ever written.”
He says he hopes his story will inspire cancer patients and others going through difficult times. “We all go through periods of time when it just seems impossible to find beauty,” said Bajoras. “Still, I do believe beauty can be found, or maybe it will find you.”