ST. ALBANS — All Sonja Sayers wants is to just feel normal.
That, to say the least, has been challenging. Three years ago, Sayers, a 37-year-old St. Albans resident, was diagnosed with mucoepidermoid carcinoma on June 18, 2012. While the salivary gland cancer is fairly common, the form it took in Sayers was not: it was in her nose and caused its amputation.
“It’s very rare,” said Sayers, while seated at Tatro’s Gourmet Soup & Sandwich on Thursday. “They weren’t sure how to treat it.”
After seeing a number of specialists, it was determined that Sayer’s form of cancer was aggressive, and had to be treated aggressively.
“They amputated my nose,” she said.
Photos on Sayers’ tablet show her face five or six weeks after surgery, with a gap in the center of her face.
Sayers underwent intensive radiation treatment for weeks as well as chemotherapy. “As far as I can tell,” she said of the cancer this week, “it’s gone.”
Since then, Sonja has had almost 30 reconstructive surgeries – some lasting four hours, others 12 – to build a new nose. In the meantime, she wears a surgical mask, both to protect her nose from dust and the elements and, said Sayers, to attract less attention.
However, despite the mask or because of it, people do stare, make rude comments or jokes, and most hurtfully, said Sayers, hurriedly pull their children away from her.
It’s frustrating, she said, and it’s also ignorant of all she’s going through.
The physical, financial, emotional toll of Sayers’ cancer – especially because she lost her nose in the process – has been a tiring, difficult experience. Now, she’s just looking for some normalcy.
“I need a break,” said Sayers. “I’d like people to see me as just me having a mask on my face. [It] is no different than a person having a cast on their arm.”
Trying to heal
When she first had her nose removed, Sayers said it was both a relief and very strange.
“At the time it was extremely painful, so it was, ‘Well, it’ll be better, it’ll be gone,’” said Sayers. But, she added, “I think to this day I still haven’t wrapped my head around it. It was really weird and foreign.”
After the initial amputation, Sayers has had to acclimate to the different variations of her face as she has undergone repeated reconstructive surgeries. Swiping through photos on her tablet, Sayers showed those to this reporter.
After a bad experience at University of Vermont Medical Center, Sayers for the past two years has been working with Dr. Julian Pribaz, a renowned plastic surgeon at Brigham & Young Women’s Hospital in Boston.
“They’re really great in Boston,” said Sayers. While her overall recovery was supposed to last for a year and a half – she was going to get a prosthetic nose prior to complications at the former UVM Medical Center – Sayers is still having her nose rebuilt three years later. She now has tubes holding up what will eventually be her nostrils.
Holding out her arms, Sayers pointed out the long and deep scars she has from doctors taking skin graphs, which she said have come from all different areas of her body including her forehead, legs and torso.
“It’s taken a lot of surgery,” she said. “[But] my surgeon hasn’t hinted at giving up yet, “so I can’t either.”
Sayers is still fighting, though it would be tempting for her to throw in the towel. Aside from all the surgeries – and the days of recovery, check-up appointments and pharmacy trips afterwards – she has other battles to meet.
Those who see her around St. Albans, said Sayers, don’t know how to respond to her masked face. People often stare.
“I’ve literally caused accidents,” she said, “people who stare too long.”
Others walk by, cough and mutter “Ebola!” under their breath, said Sayers, or tell their children not to stand next to her for fear of contagion. Sayers said she’s also been called ugly by a man standing behind her in line at a gas station register.
Others have asked if she “went through a windshield” during a car crash or put her mouth on an electrical socket.
“I would almost rather people ask me rather than say something stupid,” said Sayers. There was one time a young girl came up and innocently asked why she was wearing a mask, and Sayers responded, “I really had to sneeze and I held my nose too long and my nose blew off!”
That led to a fit of giggles, said Sayers. “You have to laugh at it in some ways.”
It’s harder to laugh off the financial side of Sayers’ situation, which, she said, is dire. Due to her near constant appointments and surgeries she has been unable to work, and while she receives $800 per month in disability payments, it isn’t enough to cover rent, utilities, phone bills, food, prescriptions and the co-pays for the estimated $4 million in medical care she’s undergone.
“I’ve applied for housing assistance but I keep getting declined,” said Sayers. She’s also applied to a number of cancer funds and while she had received help from select ones, she said others turn her down due to her not having the kind of cancer for which funds are reserved, usually breast cancer.
“I’m late on rent. I don’t even know how to pay my electric bill,” she said. “I shouldn’t have to think, ‘It would be easier if I had breast cancer.’”
She added, “It’s hard for me to go ask. I feel like a beggar.”
Amidst these challenges are others: Sayers is not in touch with most of her family, and though she has a nine-year-old son, she sees him rarely due to her sickness. She said she’s also trying to deal with anxiety that is severe at times, and the disappointment of not being able to pursue more of her life goals of traveling, making art, and working.
“It’s really hard sometimes trying to keep it together when I’ve got all this stuff going on,” Sayers said. “It’s just one thing after another.”
In addition to setbacks, Sayers said good things happen to her, too.
She has received financial help from local fundraisers such as the Jim Bashaw Cancer and Catastrophic Illness Fund, the American Cancer Society, the Kingman Street Klassic Car Show, a GoFundMe page, from friends and even from local businesses, who sometimes cover the cost of her coffee.
Sayers also receives kindness from strangers, which she said is a nice break from the staring and harassment she otherwise gets. “I’ve had an older woman step up and tell somebody off,” she said.
Sayers also takes in account how far she’s come. “I’m closer to the end than I am to the beginning,” she said. “I actually have a nose now, basically.”
Once she’s through the reconstruction process, Sayers has many things she’s looking forward to doing. She wants to travel and see new places, she wants to create more art and maybe become a tattoo artist. She draws and is creating portraits of people to earn some money. She wants to see her son grow up, and she wants to finally get back to work.
“I’d love to be working,” Sayers said. “I’d love to get that feeling of accomplishment.”
She also wants to give back to those who have helped her, including the Franklin County Relay for Life team, her small circle of supportive friends and the American Cancer Society Hope Lodge in Burlington for cancer patients.
“They’re phenomenal,” said Sayers of the Hope Lodge. “The way they talked with me, were supportive – I could almost forget I was sick.”
Looking back, forward
Thinking over her whole experience, Sayers said she wouldn’t change the fact that she got cancer.
“I’ve learned a lot,” she said. “I’m stronger than I thought I was.”
Sayers said she also knows who her real friends are now – the ones that stuck around – and she feels like she’s understands more about herself.
“I’d like to think that I have some sort of purpose – I don’t know what that is right now,” she said. [But] I need to see this through to the end. [It] was all worth it for something.”
Right now, it continues to be a difficult journey. The best thing – aside from maybe winning the lottery – said Sayers, would be to get a little relief.
“I would just like to feel normal,” she said.
Sayers got a taste of that feeling on Halloween, when she dressed up in a medieval dress and decorative mask, though not her surgical one. A photo shows her with her hair done up, makeup on, and nose only partially covered.
“It’s like the only time you can go out in the year and be wearing a mask and it’s cool,” said Sayers. “Just for that first hour and a half, I felt like the old me.”
She added, “People didn’t notice. I wasn’t getting stared at – that was the best part.”
To help or get in touch with Sonja Sayers, visit her GoFundMe page: www.gofundme.com/wh8qv3nw.