So that's what I had and one of the reasons Jane took a sabbatical. It's actually a tumor of the parotid (salivary) gland...and/or possibly a new totally unexplored galaxy in the new Star Trek movie. If you Google it, you find that there's not a whole lot of helpful information out there on either the tumor or the galaxy.
I guess that this is my attempt at a public service announcement for those of you out there searching for more information. Not that it will be scientific or helpful or anything.
But the more you know..
My little journey started last fall. I'd been sick for a couple of weeks before Thanksgiving and at some point during this period, I felt a lump on my jawbone, directly in front of my right ear.
I had a cold. People with colds sometimes have swollen lymph nodes. No biggie.
But the cold went away and the lump did not. In early December, I went in to my primary care doc for an unrelated issue and asked about it. She immediately sent me out for blood work and an ultrasound. Ok...
I show up for the ultrasound, and 30 seconds in, the tech starts making bug-eye faces at the monitor and firing questions at me. "How long have you had this?" "Has it grown?" "Do you have cats?" "Does IT HURT?"
Well, it didn't hurt UNTIL YOU ROLLED THAT WAND THING OVER IT LIKE YOU WERE TRYING TO MOW MY FACE.
More scary faces. "You must wait here! The radiologist needs to see this NOW!"
So much for bed-side manner. My heart is now beating through my chest. WTF?!
The radiologist calmly comes in and takes a look and asks me the same questions and then sends me for a CT scan and a mammogram. When I finish up this trifecta of paranoia, the radiologist pulls me aside and hands me her card.
"I'm going to refer you to an ENT. And, hey, when you find out what this is, give me a call. I've never seen anything quite like it."
Thus begins a marathon of tests and waiting. I was referred to an ENT, who ordered another battery of tests...another CT scan, a fine needle aspiration (like a biopsy for sissys), and an MRI.
There were second opinions and lots and lots of waiting.
Waiting sucks. I don't like it. I like to have a plan. I can deal with anything if I have a plan.
My ENT decided that, although she believed everything was benign and groovy, it was a tumor which needed to come out. Evidently, these things can keep growing until it looks like you have two heads (if Google images is to be believed). Regardless, they can get large and angry and cancerous and mean.
I've got enough shit to deal with without having to deal with a grumpy tumor so I said OK. Yay surgery!
I had a plan! I can deal with it if I have a plan.
So then I started to do the research, like any paranoid, control-freak, internet junkie. Like real research - not like the earlier self-diagnosis searches I had conducted on WebMD to validate that I did indeed have brain cancer and 6 months to live. I never said that I didn't have dramatic tendencies.
I found out a few things, but not much. I found out that it's not very common and recovery takes about 2 weeks and you should not UNDER ANY CIRCUMSTANCES EAT ANYTHING CITRUS-Y OR HARD OR SWEET OR FOOD-LIKE after surgery. Oh, and you get lots of cool painkillers.
I found out that Lebron James had the same surgery. I dislike him marginally less now, I guess.
I found out that sometimes they take the damn thing out and it's cancerous after all. And I found out that there are some WICKED pictures of actual surgeries on the internet that will only make you vomit a little.
As those of you who have had surgery before know, once you and your doctor decide on surgery, you actually have to schedule the surgery...and then wait for the surgery. And wait. And wait.
I actually only had to wait about 3 weeks. I pulled the "your tumor is actually looking kinda pre-grumpy so we're going to fast track you" scheduling card. Awesome.
Right before surgery, my parents flew out from Ohio to take care of me and the Princess. The Princess, being 13, was semi-oblivious to the whole ordeal. As soon as I confirmed with her that I wasn't going to die or anything, she returned to her shell of "I'm 13, bitches...don't talk to me unless I address you first...and...oh, can you give me a ride?"
And the Boy...bless his big awesome Boy-heart...flew all the way in from Spring Training in Florida for exactly 24 hours to hold my hand. 24 hours is evidently the maximum amount of time that one can leave Spring Training before one is called back to address end-of-the-world-triggering baseball-related mega emergencies...or to throw baseballs.
The Boy kissed me on the forehead. My mom and dad squeezed my hands for luck. I went back into the surgery room and placed my not-so-well covered bare ass on a table about the width of my leg, laid back VERY carefully and reluctantly let them strap me in. My doctor glanced up from her notes long enough to make sure that I wasn't going to bolt at the last minute and then, apparently satisfied that I was adequately imprisoned, went back to her note-taking. The last thing I remember is my anethesiologist telling me...and I quote..."I've got some goooooood stuff for you...." And he was so right.
Just shy of 5 hours later, they wheeled me into recovery and thus began the long road of strange and fun sensations. The right side of my face was dotted with large bruises from the nerve zapper/sensor things that had apparently been, like, nailed to my head so that the doctor could make sure each nerve was still working. The parotid gland is located in a fun place on the face where many of the facial nerves meet, chat and mingle. Unfortunately, operating in this area can be a little dicey because these nerves are like little personality nightmares. Some of them are ok with a little movement or a shove to the side. Some are ok with some light petting. Some are a bit tougher - look at them sideways and they go all "oh hell NO" and then shut down for 8 months.
My doc told me post-op that the tumor had grown around several of the facial nerves and essentially shredded them. She said it was like operating around dental floss and that she tried not to look at them sideways or cop an attitude, but they were a surly bunch. And the tumor had grown all the way down to my jawbone. Just tumor on jawbone - which would actually make a way cool band name.
I stayed overnight in the hospital and the Boy stayed with me all night. When I asked him why he wanted to stay, he said "because you would do the same for me." I nodded and pretended to know what he was talking about.
And everything was benign.
So despite my surgeon being a super suck-up to all of my facial nerves, a few of them decided to go on strike. I discovered upon waking up that I couldn't move my right eyebrow or the left side of my lower lip. I was ok with the eyebrow thing, because it left this totally smooth ageless area on my forehead....like having Botox on half your face. I just told people it was actually the look I was going for - the poor man's facelift.
The lip was a bit more traumatic because I actually had to pull one side of my lip down to take bites of anything wider than .00005 inches. Not that I could actually eat anything for awhile. That whole bit of advice about not eating food-like substances after surgery was right on. And HOLY HELL were they right about not eating or drinking anything sweet or sour or marginally tasty. Anything with salt, or sugar, or alcohol or citrus would make my face feel like it was going to burn up and combust. I think my only nourishment for a week was graham crackers - which I sucked on because chewing was out of the question.
I was down for the count - tired, sore, and just generally out of it - for almost three weeks. And then one weekend, I felt ok. It was like a giant exhaustion cloud had moved on. Just like that and Jane got her groove back.
Three months post op...
I still don't have a lot of sensation in my ear lobe or down the curve of my cheek - although heavy earrings are no longer an irritant (cuz, um, I can't feel 'em). Sometimes the whole area feels like a switchboard that's lighting up - but I've been told that's good and the nerves do weird things when they stop being anti-social and rejoin the group. My smile is almost back to normal - although the lopsided thing was kinda cute (the Boy gets paid to tell me these things). My eyebrow has some movement back - a lot more than where I started - and someday I'll have to freeze them on purpose.
My scar is actually kinda badass and I almost wish it was more visible because then when people asked about it, I could be all "yah...knife fight".
Three days post-op vs. three months post-op. Gnarly, right?! I think they peeled half my face off!
My doc says that it could take up to a year to regain all movement and sensation. And, you know, I'm kinda cool with that....because the alternative could have been so much worse.
So massive thanks and eternal gratitude to my family and the Boy and my completely awesome doctor, who will evidently be my BDF (Best Doc Forever...duh) for awhile because these stupid things like to come back.
And if you've made it this far, you are likely dealing with the same thing. Because nobody who isn't desperate for information would have read all this.
It's scary. It sucks. You wonder why this is happening to you.
But then you realize it could have been so much worse. In the grand scheme of things, this is manageable. I got lucky. Some folks have to deal with radiation or permanent nerve damage...or worse.
Long story short - if you're looking for information, go to www.patientsforum.com. It's the only place where I found useful (i.e. patient-centric) information on all types of parotid gland tumors. There are pictures and first-hand accounts and post-op checklists. There's also a very active forum, where every question I could possibly come up with was asked and answered by fellow patients, based on their own experiences.
Shoot me an email if you have more specific questions. I'm not a doctor, but I can at least relay my own experience. firstname.lastname@example.org
The more you know.
We now return to our regularly scheduled programming.