Courtney Susman is reminded of her condition every time she speaks.
Six months ago, she could have walked into Rainelle Elementary’s gymnasium and made every wiggling, fidgeting five-year-old sit still and listen. She could have commanded her acting students’ attention from the back of an auditorium, projecting an instrument she’d spent years training. She could have talked above a whisper.
Courtney’s voice – like her health – is something the 31-year-old never worried about. Until this year, Courtney was like so many young people – healthy and without much reason to go to the doctor, so much so that she debated reducing the coverage on her health insurance.
But what started as the flu in December of 2016 led to an episode of chest pain on a January day. Lasting several hours, the pain was so alarming it sent the 31-year-old to the ER. An X-ray was taken of Courtney’s chest. Some tests were run. Everything looked good, they said.
Days later, Courtney got a follow-up call from her primary doctor. That chest X-ray taken in the ER was concerning. It showed a widened mediastinum, meaning there was either enlarged tissue in her chest or a positional error had occurred during the X-ray. There was no reason to be alarmed, yet, her doctor assured. She could have just been standing at a weird angle when the X-ray was taken. But to be safe, Courtney needed a CT scan.
Within 24 hours of the scan, Courtney found herself sitting in her primary care doctor’s office, trying to make appointments at Duke Medical Center and grappling with the idea that maybe she had something really wrong with her. The CT scan showed that Courtney’s lymphatic system, a critical part of her body’s immune system that fights against infection and disease, was significantly enlarged.
“We’ve had family members who have been treated at Duke Medical Center for cancer, specifically lymphoma,” Courtney said. “We were all initially concerned that that was what was going on.”
Within a week, Courtney found herself in another doctor’s office, this time, being told that her PET scan, a nuclear medicine functional imaging technique commonly used to explore the possibility of cancer metastasis, lit up from the base of her tongue down to her lower abdomen. The doctors couldn’t give her an official diagnosis until they tested some of her tissue, but they guessed it could either be lung cancer that had metasticized to her lymphatic system or that she had some form of lymphoma that had metasticized in her lungs.
“So for two days, we were sitting in our hotel room in Durham trying to figure out, trying to wrap our brains around me being 31 and probably having cancer and where it was in my body, and knowing it was not going to be an easy road,” Courtney said.
Two days later, Courtney underwent surgery to biopsy a sample of her lymph nodes taken from her neck as well as tissue from her lungs. She didn’t have to wait long to get the news.
It wasn’t cancer. But they would need to run more tests to find out why her PET scan lit up like a Christmas tree. The physician’s assistant that had been working on Courtney’s case said that in her eight years of woking at Duke Medical Center, she had never seen a PET scan light up like that and it turn out not to be cancer.
And while she waited until Duke could see her for more testing, Courtney carried out her days with a new, constant reminder that things still weren’t quite right. After her March surgery, Courtney lost her voice, a common risk with any type of throat, neck or chest surgery. And after more than two months with being able to speak barely above a whisper, it still hasn’t come back. She recently learned that the nerve running to her left vocal chord was damaged during surgery. Over the next year, she’ll wait and see if the nerve repairs itself before trying any kind of corrective treatment. For now, Courtney, the education director of the Greenbrier Valley Theater, is learning new techniques for communicating to her students – like using a voice enhancer that looks like a boy-band microphone or getting an app to say words for her – and figuring out how to teach her students to project their voice, when she doesn’t have one.
“I gauge my voice all the time,” Courtney said. “It’s like weighing yourself every day or two times, three times a day. You’re not going to see that progress, but it’s so instinctual to think about it every single day, every single minute.”
It’s almost comical, Courtney said, to think about someone who has been trained professionally in a vocal sense of how to tell stories and communicate to audience, who now has to navigate the world of theater without that critical tool.
A few weeks ago, Courtney learned that she has sarcoidosis, which according to Mayo Clinic is the growth of tiny collections of inflammatory cells (granulomas) in different parts of her body, mainly affecting Courtney’s lungs and lymphatic system. She’ll begin steroid treatment for it soon and will continue to keep an eye on it as it can sometimes cause organ damage.
She’s still thankful it isn’t cancer, but now has a new, lengthy list of medical concerns at a time when Congress is debating the repeal and replacement of the Affordable Care Act, which is how Courtney receives her health insurance.
Before this year, Courtney never even worried about going to the doctor. She’s never had to worry about meeting her out-of-pocket deductible, which she reached quickly in March. And before this year, terms like “pre-existing conditions” never applied, but now they do.
If she could offer any advice to her peers, Courtney said, it would be: Have health insurance.
Anna Patrick is a proud member of the UpThink team. A journalist by trade, she is currently based in Charleston writing for a handful of magazines and helping nonprofits, like Generation WV, tell their stories. When she isn’t hunched over a keyboard pecking away, she’s probably hunched over her puzzle table trying to find that next piece.
Like party favors, but for your brain. Enjoy these weekly goodies including viral videos, interesting articles, curated playlists, and more.
- LISTEN: Some of Courtney’s favorite tunes.
- READ: A unique Shakespeare production that Courtney would love to be a part of someday.
- WATCH: The intro to “Ragtime,” a musical that reminds us where we came from.