Four years later, Brown is cancer-free and, unlike many patients who undergo total glossectomy, able to eat and speak understandably.
How did you discover you had tongue cancer?
A small sore appeared on my tongue when I had a sore throat. I took antibiotics for the sore throat, but the spot was still there after the sore throat subsided. I then started to have ear pain and the sore got larger. I was prescribed antibiotics again. When my doctor looked in my ear she didn't see any swelling, but the earache became unbearably painful. I'd never been in pain like that.
In my heart of hearts, I knew at that point that something was terribly wrong, but I wasn't sure what it was. I decided to see another doctor, who referred me to an ear, nose and throat specialist. I think he knew right away that what he saw might be cancerous, because he insisted upon a biopsy right away.
Was it hard to decide to go ahead with a glossectomy?
My doctors felt that my cancer was extremely aggressive and advanced, and that the surgery, followed by radiation and chemotherapy, would give me the best chance of survival and recovery. It's a personal decision but I wanted the best chance of survival possible.
Many people think it's going to be the end of their lives if they get the surgery and choose to try chemo and radiation first to save their tongues – even though this isn't recommended and most often doesn't work. If you wind up needing the surgery anyway, there can be a lot of complications with surgery after radiation – your skin and blood vessels don't heal as well. Also, the cancer may essentially never leave your body and end up metastasizing.
It's something I feel strongly about. I've befriended patients who passed away because they went down that path.
Can you describe your surgery at UCSF?
I had three surgeons who worked as a team. They removed my whole tongue – due to the extent of the tumor they couldn't save any of it, unfortunately. They split open my jaw, through my chin all the way down through the right side of my neck. It was extremely invasive, but they had to make sure the cancer had not spread anywhere else.
They then took tissue from my left wrist and upper arm area and used it to re-create a tongue. It's more of a passageway than a tongue like I had before, but it has some feeling to it. I can taste fairly well because there are taste buds all over your mouth, not just on your tongue. A lot of taste is through smell and mine must be excellent, because I still taste and enjoy food.
Surgeons used to do a larger graft that resembles an actual tongue, but now they think that doesn't help the patient with eating and speaking. The tissue doesn't have any musculature and can't move, so it just hinders the process.
I do feel that the surgeons at UCSF saved my life, and that the way they rebuilt me allowed me to recover from such a drastic surgery as best I possibly could.
What was it like to come out of such an invasive surgery?
It was like I lost two days. I was just in a twilight zone.
When I woke up I was on a feeding tube, I had a tracheotomy and couldn't speak at all. I had drains in my face to reduce swelling, but even with the drains, your face is still swollen out to here. My first impression was, "Oh my God." You think you'll be like that forever, but you won't. If you see me today you can barely tell. I have scars but I am not disfigured at all.
I spent 13 days in the hospital. I actually told them I felt better than I really did, just so I could go home.
About three months after I got out of the hospital, we went on vacation to Mexico. It was so great to get out of my apartment and do something that felt good. I couldn't get in the water completely, but I would stand in the ocean up to my waist and just be like, "Aaaaaaaah."
I want to stress that I was very fortunate to have an incredible network of family and friends who supported me. I don't think I would have done as well without them, especially my husband, Brian. He was so sweet and caring and was there for me in my darkest hour.
How did you learn to eat and speak without a tongue?
It was a very slow process. I still feel like I evolve every few months, especially with my speech.
After the surgery, I tried to eat as many different types of foods as possible before I started radiation treatment. The radiation causes quite a bit of discomfort in your throat and it completely kills your appetite. I was glad I developed those muscles prior to radiation, because I really didn't eat for two or three months. All my nutrition came through a feeding tube.
I worked with speech therapists initially. The first thing they make you do is swallow water because it's the hardest – it's the thinnest liquid. Once you can swallow water without aspirating it, then you can move on to soft foods like applesauce and yogurt.
You kind of have to be hungry to want to master eating. I had lost so much weight that I needed the nutrition from the tube, but if I had too much, I didn't have the appetite to work on solids. It was a tough balance.
Learning how to eat again was the hardest thing I'd ever done. I was literally dripping sweat. It would take me about two hours to eat bites of teaspoon-sized food. It was so frustrating – I was hungry! I lost about 10 or 15 pounds during treatment.
I now eat every type of food, although I need to be careful to take small bites and because of the radiation, I can't handle spice. Radiation essentially burns the inside of the mouth, and the tissue is still sensitive. I love spicy food, but it burns so bad it's not worth it.