Sonya is an architect, mother of two extraordinary young women, and has been married to her college sweetheart, business partner and love of her life for many decades. She is an avid reader and fiber arts hobbyist. And now, a total glossectomy and laryngectomy survivor.
Sonya’s cancer journey began in April of 2021, she was experiencing sporadic jaw pain. It was “getting on her nerves enough” so she scheduled an appointment with her orthodontist, who diagnosed and started treating her for Temporomandibular Joint (TMJ). Sonya also tried acupuncture and Botox injections, but the pain persisted. Her new dentist explained that she had bone spurs in her jaw.
Some days, Sonya would just turn to her husband and say, “I just can’t talk anymore, my face hurts so much.” By October, she noticed her tongue was crooked when sticking it out. The orthodontist mentioned, “Well Sonya, your face has never been symmetrical. “
Sonya’s life is no stranger to stress. However, in August 2021 things started to escalate. Her father was diagnosed with bladder cancer, and had his bladder removed within the month. In October Sonya travelled to rural Maine to move her mother, who was diagnosed with Alzheimer’s, to memory care facility in Arizona.
Despite all the amazing support Sonya received from her family during this time, she shares, “it was a few of the most stressful weeks of my life. So, no surprise when the pain in my face escalated!”
In November she scheduled a follow-up appointment with her orthodontist and pointed out that her tongue looked very odd. He examined it more closely, made a sad facial expression and said, “Sonya, I have a good friend who is a maxillofacial surgeon. I want you to see him right now. Drive over there, now. I think it might be a tumor.” Sonya emotionally responded, “Well I need that like I need a hole in my head!”
A few days before her appointment with the maxillofacial surgeon, Sonya was hanging out with her family when she had a strange sensation of liquid trickling down the back of her throat. She quietly removed herself and confirmed her worry… it was blood. ‘WE HAVE A PROBLEM’, she shared with the others. They rushed her to the ER. Shortly thereafter, she began hemorrhaging from her mouth and nose. The ER care team was able to get the bleeding under control with a cauterization and embolization.
Eight day later, Sonya emerged from the hospital with an initial diagnosis. Myoepithelial Carcinoma. In her own words, “A big a$$ tumor at the base of her tongue. And, after much debate among pathologists and oncologists, they decided by slim margin to call it out as Adenoid Cystic Carcinoma
A total glossectomy was recommended.
Her family rallied around her. They collectively searched for the best experts. There was a surgeon in Tucson Arizona, where she lived, who said he could do it, but had never done it before.
Sonya explained her hesitancy, “Okay, maybe it’s just me, but if a dude is going to take out my whole tongue, I didn’t want it to be his first rodeo. I was extremely fortunate to be accepted by Doctor Ha and his team at UCSF. And to have a family who could help me do this both logistically and financially.”
It was not clear prior to surgery how extensive it would be to give her clean margins.
In 2022, after 15 hours of surgery, Sonya woke up without a tongue, epiglottis, tonsils, hyoid bone, larynx, half a thyroid gland and 66 lymph nodes. She was “just bloody happy to be alive. “
When she initially received her diagnosis, Sonya searched for accounts of other people who had gone through similar diagnosis and came up with very few results. She found clinical data and scary photos and not much more. So, Sonya launched her own website, Glossectomy Girl, with her own blog. Initially, her website and blog provided her with self-therapy as much as sharing it with others seeking information.
Sonya is now expanding glossectomygirl.com to include helpful research on: ways to speak, liquid diet, nutrition, and just giving the perspective of someone who has and is going through this journey.
She hopes that she can further help others by becoming a Alliance Ambassador and Peer-to-Peer mentor.
