HI! I'M SONYA
I am a 52-year-old architect, mother of two extraordinary young women, married to my college sweetheart, business partner and love of my life, for 26 years. Avid reader and fiber arts hobbyist. Total glossectomee and laryngectomee.
In April of 2021, the sporadic jaw pain i was having, got on my nerves enough to go see my orthodontist. He diagnosed and started treating me for TMJ. I tried acupuncture. I tried botox injections. The pain persisted. I saw a new dentist who told me I had some sort of bone spurs in my jaw.
Some days, i would just turn to my husband and say i just can't talk anymore, my face hurts so much. By October, I noticed my tongue was crooked when I stuck it out. The orthodontist told me, well Sonya, your face has never been symmetrical.
My life is no stranger to stress. However, in August 2021 things started to escalate. My father was diagnosed with bladder cancer. In September he had his bladder removed. In October I had to go to rural Maine to extract my alzheimers mom from her home and relocate her to memory care in Arizona. Despite the amazing support i had from my family during this, it was a few of the most stressful weeks of my life. So, no surprise when the pain in my face escalated!
I went back in November and said listen my tongue is really weird, look again. He looked. He poked. His face fell. He 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. I blurted out; Well I need that like I need a hole in my head!
At the beginning of December i was hanging out with my family when i had a strange sensation of liquid trickling down the back of my throat. I quietly removed myself and confirmed my worry... it was blood. 'WE HAVE A PROBLEM', i said. We rushed to the ER. Shortly thereafter i began hemorrhaging from my mouth and nose - a real life exorcist scene. They were able to get it under control with a cauterization and then embolization. 8 days later i emerged from the hospital with an initial diagnosis. Myoepithelial Carcinoma. READ: a big ass tumor at the base of my tongue. 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.
My family rallied around me. They searched for the best experts we could find. There was a surgeon in Tucson Arizona, where I live, who said he could do it, but had never done it before. 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 what would need to be removed to give me clean margins. My focus was on staying alive. So I told Dr. Ha, when in doubt, take it out. On January 25th 2022, after 15 hours of surgery, I woke up without a tongue, epiglottis, tonsils, hyoid bone, larynx, half a thyroid gland and 66 lymph nodes. I was just bloody happy to be alive.
When I first received my diagnosis I searched for accounts of other people who had gone through this and I came up with very few results. There was clinical data and scary photos and not much more. I started this website with my blog, which initially was as much self-therapy as putting it out there to share with anyone else seeking information. Over the past year I have been expanding this site to include as much of the research I have done for myself on ways to speak, liquid diet nutrition, and just giving the perspective of someone who has and is going through this journey. I welcome input as I am not an expert on anything! I hope that you find this informative and at the very least a bit entertaining!
Keep in mind i'm snarky and sarcastic and sometimes i might show icky pictures of the process. So be warned!
Me, a few days prior to surgery.