- Associated Press - Monday, July 21, 2014

WILLISTON, N.D. (AP) - The first thing Stacy Johnston noticed in February 2010 was that one side of her nose was plugged up. She figured it was a bad sinus infection.

She never expected to hear the word “cancer.”

After monthly doctor’s visits, a slew of antibiotics and still no answers, the Williston native visited an ear, nose and throat doctor in Bismarck.

“Everything seemed to be OK,” she said. The doctor thought she had polyps, so he did surgery. Lab results came back inconclusive and were sent to the Mayo Clinic in Rochester, Minn.

After more than a year of living with a stuffy nasal passage, Johnston finally learned her diagnosis: esthesioneuroblastoma, also called olfactory neuroblastoma. The rare form of cancer involves a tumor in the nasal cavity that often metastasizes to neck lymph nodes.

“That’s what was causing the stuffiness,” she said. “It was the tumor actually growing down into my nose.”

The stay-at-home mother of five went to the Mayo Clinic for checkups in April 2011 and had surgery in May. Johnston underwent a craniotomy.

“They cut my head open, basically,” she said. Her finger traced where the cut was_from the top of one ear, arcing over her head to the top of the other ear. Doctors removed the tumor as well as the nerve that controls smell.

To ensure the lymph nodes were cancer-free, doctors also sliced from her right ear to the middle of her neck and removed about 26 nodes.

Back in Williston, Johnston underwent radiation five days a week for six weeks.

In April 2013, after several follow-up appointments, doctors discovered another tumor in her left maxillary sinus and a cancerous lymph node in her tonsil area. More serious surgeries followed_with cuts from the other ear to the middle of the neck, removal of a piece of bone, a tumor and more lymph nodes.

She returned to Rochester for five weeks to undergo two rounds of chemotherapy and five weeks of radiation, twice a day, five days a week. She lost all her hair and about 54 pounds.

“I got so many sores in my mouth from the radiation burning the inside of my mouth that I couldn’t eat, so they had to put a feeding tube in because I was losing weight,” she said. “I couldn’t talk because I couldn’t open my mouth so I’d be writing everything I wanted to say. I had the feeding tube in from the middle of July until the end of January.”

Stacy Johnston has since been cancer-free.

Although she will never be able to smell again, Johnston stays positive. Since that surgery, her catchphrase has been “Smell You Later.” She even has a T-shirt with that phrase on the back. The front reads: “Stacy Says Cancer Stinks.”

That’s the kind of attitude she tries to exude every day.

Esthesioneuroblastoma is so rare, she said, that only about 1,200 patients have been diagnosed with it since 1925.

“I’ve always wanted to be unique,” she explained, lighting up in a smile.

She didn’t celebrate just after her second surgery. Instead, she said she celebrates life each day. It’s hard to believe her petite frame endured all the physical and emotional pains that come with cancer, but she fought through it especially with the support of her kids, her mother and her husband, Darren.

The 45-year-old’s surgeries eradicated her sense of smell but only amplified her mindset as a fighter.

“It was a battle. There were times where I wanted to give up,” she said. “Many, many times. But I couldn’t. I have five kids and a stepson and my husband and my brothers and aunts, uncles, my mom, my dad. I couldn’t give up. And I won’t if it comes back again. I won’t give up. I’m a fighter.”

Johnston got a tattoo on her forearm to commemorate the battle her body faced. It has the ribbon symbolizing head and neck cancer with the word “strength.” Her second surgery was particularly arduous_with a burned neck from chemo and radiation, and a painfully sore mouth_but she stayed tough for her family.

“My oldest son was with me with the first surgery, and I think the other kids were scared,” she said. “So I didn’t want to push it, but I would tell them, ‘I’m going to be OK. I’m OK. I will make it through this. I’ll keep fighting.’”

When she couldn’t find the strength to keep her hopes high, her husband was by her side.

“He wouldn’t let me get down: ‘Be positive, honey.’ He’d help me change my mind,” she said. “He’s my rock. He’s there all the time for me. Granted, he had to work when I was going through it, but he was there every minute I needed to talk or cry or a hug or whatever it may have been.”

Johnston was invited to share her journey at this year’s Relay for Life Survivor’s Banquet. She will also be participating in the Relay for Life walk on Aug. 1 at the Cutting Field at 9th Ave. NW. She used to attend the cancer walk before she was diagnosed, but as a survivor she now feels a mix of emotions at Relay for Life.

“I’m sad for everybody that has been through everything they’ve been through,” she said. “But also proud because I fought that battle.”

Today, Johnston is hardly ever without a smile despite her grueling journey: 13 months of a plugged-up nose and unanswered questions. Then came tests, surgeries, radiation, chemo, and countless visits to the doctor. And now, she keeps the scars and stories that are woven into her past and present.

“You can’t take life for granted,” she said. “You have to treasure every moment_good and bad_and don’t worry about the little things. Be happy. That is a big thing. Be happy and be positive.”


Information from: Williston Herald, https://www.willistonherald.com

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