Meet Amber

In 2018, then 34 year-old Amber Faudree had a sensation of stinging on the left side of her tongue. It happened on and off, so she thought it might be due to anxiety from being in a friend’s upcoming wedding, or something that she was doing subconsciously or unknowingly like while sleeping, such as biting her tongue. She also thought maybe she was putting pressure on that area of her tongue with her teeth, like a friction of sorts.

So in the spring of 2019, she mentioned it when she went to see her dentist for her routine cleaning. There was nothing visible, so they agreed to monitor it. By her next dental appointment in the fall of 2019, her dentist suggested that if something was there at her next appointment in six months, they’ll consider looking into it further. By January of 2020, the area of stinging had become a small, red spot on the left side of her tongue and Amber took a picture to document it. In the spring of 2020, of course the pandemic hit, and everything shut down. Subsequently, her follow-up dentist appointment for that spring was cancelled because the office was closed. The spot was still small, red, felt raw, and started to get irritated by eating spicy food. By July, the spot was still there, but it had actually become a small crater, and was more of an indentation at that point. Her speech started to change as she was trying to avoid using that side of her tongue while she was talking. Food began to get stuck in the indentation, so she decided it would be best to see her PCP.

Her nurse practitioner Brooklee Marshall set up a biopsy with a local ENT (ear, nose and throat physician), which took 5-6 weeks to get the appointment. Subsequently, after speaking with her mother, Amber decided to call back to her PCP to see if they could get her an appointment sooner somewhere else. Luckily, they were able to get her in with Dr. Shane Griffith sooner at Mid Coast Hospital. Due to the pandemic, she was not allowed to have anyone accompany her for any of her appointments. A few days after the biopsy, Amber then received the call that no one wants to get and she instantly knew something was wrong. Brooklee from her primary care office was on the line saying: “Are you home? Are you in a safe place?” She was then told it was cancer, and the biopsy confirmed the diagnosis of moderately differentiated squamous cell carcinoma of the tongue. Everyone was surprised and confused because she was young and healthy, never smoked, was only a social drinker, and really had no other risk factors.

Dr. Griffith referred Amber for a consultation with ENT surgeon Dr. Christina Mimikos at Maine Medical Partners Otolaryngology in

Scarborough the following week. By August 19th, she had her consultation and was scheduled for surgery for a hemiglossectomy (partial removal of the tongue), a neck dissection (removal of lymph nodes to stage the cancer), and reconstruction using tissue from her right forearm (a radial forearm free flap procedure). She was connected with a nurse navigator, Amber O’Leary, and referred to a speech language pathologist, radiation oncologist, dentist, and plastic surgeon. Her surgery took place on August 31, 2020, and it took 9 1/2 hours to complete for the procedures on the tongue and neck, as well as reconstruction of the tongue with tissue harvested from her forearm, and then to close the forearm surgical wound by Dr. Zelones. She stayed in the hospital for the following two weeks. Due to the pandemic, only one visitor at a time was permitted during her hospital stay, so the isolation and loneliness were difficult. The surgical oncology floor at Maine Medical Center was a mix of patients, due to the hospital needing more beds for patients with Covid. Amber remembers when she first got to her room from recovery how intrigued and excited her nurse was, because she was an actual surgical oncology patient, when all she had been caring for were patients with COVID While hospitalized, Amber had a tracheostomy (small surgical opening into the trachea [windpipe] for placement of a tube for air exchange), as well as a nasogastric (NG) tube placed for fluids and nutrition directly into the nose and through the throat into the stomach. She found it frustrating to not be able to talk or convey what she needed at times. Visits with the respiratory therapist, although necessary to help keep her lungs clear, weren’t fun.

The area of surgery on her forearm and wrist healed well, although she lost some sensation in her hand and required a skin graft from her thigh to cover the area. Of the lymph nodes removed from her neck, one of twenty were positive for cancer cells resulting in her final diagnosis of T4aN1M0 tongue cancer. She was discharged on September 11, 2020, but not before agreeing to have a gastrostomy feeding tube (G-tube) inserted through her abdomen directly into her stomach for nutrition. She had some visiting nurses come to her home, and was doing her feeding with the G-tube at night. She did have some nausea associated with her nutrition because she was lying down flat while sleeping, but she found it hard to sleep at an angle. She had a speech therapist helping her to regain the use of her tongue for speech and swallowing during her recovery.

She was referred to medical oncology to consider chemotherapy, which was recommended, Continued along with concurrent radiation therapy, both performed at Central Maine Medical Center close to her home. She had a venous access device, also called a port, placed in her chest for infusions. The question came up about her future fertility at the beginning of treatment, but due to insurance issues and lack of time to decide (as her radiation therapy had already started), she was unable to harvest and freeze any of her eggs. She had thirty radiation treatments and four chemotherapy infusions of the drug cisplatin. She also had weekly infusions of fluid to maintain her hydration.

The chemotherapy caused Amber to lose the lower half of her hair, but she completed all of her treatments on November 13, 2020. As she was going through treatment, she walked her dog, Todd, three times a day.

This was a good way to get out of the house and stay active, which likely kept some of the treatmentrelated fatigue away. Amber also thinks Todd knew something was wrong with her because he stayed by her side at all times before her diagnosis, and didn't want to leave her.

Amber was off work for six months, but on March 3, 2021, she went back to Talbots in Freeport. She started slowly at 32 hours a week, for four days a week, so that she could see how she tolerated it. As far as side effects, Amber did experience some lymphedema (swelling) associated with her surgery and radiation, for which she saw a physical therapist (PT) who performed manual lymphatic drainage massage and compression. She was taught how to do selfmassage to keep the area from swelling, as well as jaw and neck range of motion exercises prescribed by her PT to maintain her flexibility.

Her best advice for other survivors is to:

“Advocate for yourself! Don't be scared….you're not alone. Listen to your doctors. I felt very safe, and well taken care of. It didn't make sense to be afraid and to not ask questions. Make sure you take time to heal. Don't rush. I would not change a thing!”

Amber has a Facebook page called “Cancer is only a chapter, not the whole story”. She recommends that survivors speak to people with a similar diagnosis and experience for inspiration and support. Amber said she feels like this article was: “A full circle feeling for me, how I feel like this is why I went through this journey I did. Or, why I was put on this earth, to do exactly what this is doing, going to help and inspire people. I'm thankful for Dr. Mimikos, and my nurse navigator Amber, for nominating me for this interview!”