Another update, another day.
Seriously, the holding pattern is kind of ridiculous. It’s the same thing, every day:
- Call doctor; am told that they’re waiting to hear back from the insurance.
- Call insurance; am told that they’re waiting to hear from their board
The thing is? It’s just words on a paper. They don’t see my tooth broken off in the front. They don’t get to hear about how my jaw aches and how my face hurts. How every single tooth feels loose and how I can’t take bites because I’m genuinely afraid yet another tooth is going to break. How I can suck air between my teeth because they’re that thin.
There’s nothing left inside my teeth. They’re hollow. They’ll break if I bite into a sandwich, so if I can’t cut it, I can’t eat it. When I said this, in utter frustration, to the woman at the oral maxillofacial clinic, her response was, “Okay.”
It might be okay to you, but I’d like to get this done and over with. I’d like to feel like I’m not a walking cancer patient in everything that I do. Like I’m not feeling sorry for myself. Like I can go get a job. Like I don’t have to feel self-conscious about talking to people when I KNOW they can see the holes in my teeth.
The scars I carry, I’m going to carry forever. I look like the victim of a shark attack. People are always going to stare at me, but come on. Can I at least enjoy a good sandwich while they do?
I like turkey.
It’s disheartening because, really. How many times can you ask your friends to donate their gas money to your teeth?
And that’s just a third of my final goal of $30,000.
Teeth aren’t just a vanity thing, you know. It’s a health thing. Cancer wasn’t the worst part, it’s the recovery and getting back into society. It sucks.
Age is Nothing but a Number - My Cancer Story
I had a sore tongue. You know, sometimes you bite it, it gets sore, and then you keep biting it and it doesn’t get better? Kind of like that. Except it kept not getting better.
Started at the end of October in 2008. I had just moved in with my sister so that her boyfriend could go to boot camp. She needed someone to watch her son so that she could work and I needed somewhere to live.
My mother had died of ovarian cancer in December of 2006 and since then, it’d been just us. No extended family to rely on and my dad (my parents divorced when I was five) had moved to Mexico two years earlier. So really just us. Us and our friends. This is a very important distinction to make.
So, I had this sore that wouldn’t go away. And it kept getting bigger. And it was kind of white and fuzzy looking, so I went to urgent care down the street. They said I had thrush. Antibiotics. Two weeks later, it wasn’t any better and it REALLY hurt, so I made an appointment to see my personal doctor. He didn’t even look in my mouth, he just prescribed more antibiotics for my ‘thrush’. It didn’t get better.
In March, I finally went to a random ER in a random town and this little ER PA sat for four hours with me until she found what I had in a random book. She got the doctor in charge to shove his hands in my mouth (OHMYGOD SO MUCH PAIN) and dig around and yeah, that’s I had. Oral Leukoplakia.
The problem? It doesn’t just happen to normal every day people. It happens in HIV patients, mostly. Especially with the hole in my tongue to go with it. She asked me questions about my sexual history (non-existent after 2001), my use of IV drugs (non-existent completely) and so on and so forth. The only risk factor I had was a blood transfusion I’d had in 2002 and since the South Texas Blood and Tissue Center had once admitted that they had found HIV positive blood in their banks, there WAS a risk factor.
I underwent testing for a rigorous amount of STDs, including HIV, and they all came back negative.
In April, I could no longer eat. I was in excruciating pain. I couldn’t swallow, my tongue was so big on the right side that it touched my cheek and I couldn’t shut my teeth together. It had been six months and no one was taking me seriously. My personal doctor wouldn’t see me anymore. The two times I’d seen him, he didn’t look in my mouth and I gave up trying to talk to him.
Frustrated, I went to another ER near my house and cried to the doctor there. He gave me a liquid steroid and said that it’d take a few hours to kick in. He also gave me the name and address of his ‘buddy’ in Tacoma (about 45 minutes away) that would see me if I walked in. The guy was an ENT and really didn’t have anything else to do. Sounded shady as HELL, but I didn’t care.
When I woke up the next morning, my mouth was a normal size and I ate everything in my kitchen. I’m not even lying. I COULD eat, so I did. I hadn’t had solid food in two weeks. Then I got in the car and went to the doctor’s office in Tacoma.
He was 80 years old, sat me down in a room the size of a closet, took one look in my mouth before sitting back, looking me dead in the face and saying, “You have tongue cancer. I’ll do a biopsy to make sure, but I know I’m right.”
We set up a date and a time and I drove to my friend Rachael’s work to cry. She told me not to panic, that so much had already gone on with it that it was kind of useless to get worked up over THAT kind of diagnosis and to wait until the biopsy results came back.
He had results before I was done with surgery. Cancer. Also, the large lump in my neck? Cancer. Squamous cell carcinoma. Stage 3B.
Dr. P got on the phone with a man HE knew at the University of Washington and I was there in just a few days. Dr. F is one of the top doctors in the WORLD for the kind of surgery that they needed to do and they were going to do it in two weeks.
They were going to remove half my tongue, replace it with a skin graft (called a flap) from my left forearm and then cover that with a skin graft from my leg. In other words, they were going to make me a new tongue from my arm, lining up the blood vessels and everything.
Yes, this IS the 21st century and not something from Star Trek. :)
My surgery was July 2, 2009. Thirteen hours. I was in ICU for five days. I vaguely remember something happening on the 4th, but nothing specific until the 7th or so. Most of that is a blur, and that’s probably a good thing. I have one picture from my time in the hospital and it’s NOT pretty.
I wrote with a white board while in the hospital, I had a trach, my new tongue was sewn to my teeth to keep me from trying to move it, and I had a feeding tube in my stomach.
I haven’t needed speech therapy or nutritional therapy (which surprises people), but I did lose a LOT of mobility in my right shoulder from where they cut open my neck. They slit my neck from ear to ear and I have some REALLY badass scars. If I ever go to prison, I already look like I’ve done the time.
(It doesn’t look like that anymore)
I did chemo and radiation, and I didn’t lose my hair, but I WILL lose my teeth. I have non-working salivary glands, so I always have to have water with me. I can’t eat anything spicy or sweet or overly salty. Things don’t taste the same anymore, but that’s okay. I was never a chocolate fan to begin with.
I am, however, officially in remission :D
My doctor said that, as aggressive as it was, as far as it spread, and as big as my tumor was (3.5cm)? He’s surprised it hasn’t come back. I said, “Thanks for jinxing me.”
But really? I’m going to be okay.