A mom battling tongue cancer found a special way of ensuring her kids will always be able to hear her voice the way they remembered it.
Jamie Powell is a special education teacher and children’s theater choreographer who lives with her high school sweetheart husband and their two sons Jack and James, aged 9 and 7, in Orange County, California.
Up until December 2019, Powell’s life was like that of any busy working mom. But then one morning, she noticed something felt different. “I woke up with a bump on my tongue,” Powell told Newsweek. “I thought I bit in my sleep and it would heal on my own, but it never went away. It just got bigger.”
Powell spoke to her dentist about the raised red bump visible on a square patch of her tongue but was reassured that she was too young for it to be anything serious and “didn’t met any of the criteria to be concerned.”
Even so Powell could shake the feeling it was cause for concern. “A couple weeks later this bump was bigger and now rubbing against my teeth,” she said. “I just knew in my gut this was something I needed a second opinion on.”
Eventually, in March 2020, Powell received the diagnosis that left her stunned: she had tongue cancer. “I had never heard of tongue cancer,” she said. “I was in the twilight zone when I was told that’s what it was. Just in complete shock.”
Powell’s shock was understandable given how rare her diagnosis was.
Tongue cancer makes up less than 1 percent of new cancer diagnoses in the U.S., according to The Oral Cancer Foundation. Though it remains among the most common type of head or neck cancer, it is twice as common among males and people aged 40 and over.
Powell quickly realized she was something of an outlier in this respect. “When I was first diagnosed, I went straight to the internet to do my own research and found no one that was around my age going through this. I found one person, that was it,” she said.
This inspired her to document her journey on TikTok, posting under the handle jamierarpowell, in the hope that it could serve as a resource for anyone who may one day find themselves in the same position and in need of help. It helped Powell too though. “It was therapeutic for me to write and video my experience,” she said. “Felt good to get it out in these mediums.”
Powell’s treatment was intensive. “I underwent a glossectomy to remove half of my tongue and replace it with parts of my thigh,” she said. “I also had a neck dissection to remove lymph nodes where the cancer had spread. After surgery I did 30 rounds of head and neck radiation.”
Alongside all of the fear that comes with a cancer diagnosis, Powell was dealing with the very real prospect of losing her voice. “I was devastated,” she said. “I thought about my kids and how they would never know the voice of their mom. They were so young, and I was just so very sad.”
Powell had been a performer long before she had kids and her voice was a huge part of her identity. The idea of losing it had her in a tailspin. “I felt lost and immediately didn’t know who I was. This cancer had defined me,” she said.
But whatever turmoil she was going through personally, Powell was determined to protect her two sons and find ways of reminding them that mom was still mom. That’s how she hit upon the idea of recording her voice before she underwent the glossectomy.
“The doctors had said I would sound different and that the impact won’t be known until surgery was over,” she said. “I decided to record my voice so my kids could remember how I was before I got sick.”
TikTok/jamieraepowell
Powell had always loved singing with her sons and reading stories together. She wanted to make sure that, whatever happened next, they would be able to do that. “I recorded all my kids favorite songs and little messages that my husband could play for them while I was in the hospital,” she said. “I said I love you and sang happy birthday and their bedtime songs, so they could always have and remember.”
Powell documented part of this experience in a video posted to her TikTok. It was an act that resonated with millions. At the time of writing, the video has been watched 2.3 million times.
Powell says she is doing “okay” now, but life is undoubtedly different. “I have lifetime side effects from this cancer that I deal with on the daily,” she said. “I can’t eat normally or speak clearly, but I have come so far with speech therapy and keeping with a routine to help with the mouth pain.”
She continues to document her journey online and hopes it not only inspires others to be resilient but encourages people to “be proactive with their health and get seen right away when something doesn’t feel right.”
“I would not be here today if I didn’t seek out that second opinion,” she said. “My voice is different now, but it is powerful.”