Thursday, September 30, 2010

Tired, so reprinting the mass email I just sent....

The good news is that my hearing is normal, my mouth is okay, though my uvula (that little dangly-down thing at the back) is purple for some reason, and my left sinus is clear. The not-fun news is not fun.

The tumor (heretofore known as Cap'n Lumpy) has vascular (blood vessel) and nerve involvement. In the doc's opinion, that means that it's likely a higher grade (read: nastier) and more likely to metastasize or recur than your average, every-day, extremely rare freaking tumor.

Plus, I have a lymph node that looks suspicious.

So. In addition to the MRI that I have to have (because my CT yesterday showed exactly nothing except a possibly suspicious lymph node), I will have to have an ultrasound-guided biopsy of the lymph node with a pathology read right then and there, and then have a PET scan. For you non-medical types, neither of these is as scary as they sound. An ultrasound-guided anything merely means that somebody will be sticking a little wand up to my neck and locating the lymph node by echolocation, like a bat does, so that the dude sticking the needle into my neck gets a sample of lymph node and not just some random tissue.

A PET scan is not what my animals do every morning to see if I'm indeed awake. Instead, it's a kinda-cool whole-body scan that uses radioactive sugar water to see if the cancer's spread. See, cancer cells multiply at a much higher rate than normal cells, so they use more sugar, which is the basic fuel of every cell in your body. I'll be injected with radioactive hummingbird food and scanned from head to foot. When you do a PET scan of cancerous tissue, it lights up like New York City on New Year's Eve. Normal tissue looks vaguely glow-y and drops into the background.

I'm no dummy: I know that a PET scan is not the usual MO when faced with this type of cancer.

Now, then: On to surgery.

Surgery is scheduled for October 20th.

It will take anywhere between two and four hours and will be, thank God, a transoral (through the mouth) approach. There is a chance I'll have to have my neck dissected, to get out the lymph nodes, but I won't have to have a breathing tube placed in my neck or a feeding tube placed in my stomach, thank God. I could've done all of this just fine, but a tracheostomy (breathing tube) would be freakin' pushing it.

I'll stay in the hospital for a couple of days, long enough to get good pain control and be able to take fluids. I'll be fitted with something called an obdurator, which will be placed during surgery and cover up the very big hole that the surgery will leave in the top of my mouth.

Now, then, as to the obdurator: (Medical folks can skip this; you already know all this stuff.) This surgery will take most of my soft palate and a portion of my hard palate on the right side. It might also take some teeth, but that's a minor concern.

The reason this is important is that your soft palate keeps you from either choking on food or squirting it out through your nose every time you swallow. With a big hole there, things tend to go wrong fairly quickly. Hence, the obdurator: it looks a bit like the top of a retainer, minus the wires, and covers up the big hole. Hi presto, and I won't have liquids squirting through my sinuses! I will wear the obdurator for a year, then have reconstructive surgery if I wish.

Meanwhile, there's the whole radiation angle. I won't lie to you: head and neck radiation is nasty. It's nastier than the surgery itself, and has a lot of really huge downsides. Unfortunately, tight-beam radiation or implants are not an option in this case, as there'll need to be a good "scatter"--in other words, I can't have targeted radiation because it might miss some cancerous cells. Instead, I'll have classical external-beam radiation that will screw me up for a good while--probably at least six to eight weeks.

Thankfully, I'm already forty pounds overweight. This means that any weight loss--and there'll be some, so don't be surprised if you see me looking skinny--won't be the desperate situation it would be in somebody of more normal weight. There will be lifelong side effects of the radiation to deal with, but that's a bridge I'll cross later.

So: October 20th, two to four hours, two-day stay in the hospital (probably on the fifth or seventh floors, my home turf at Sunnydale). Obdurator, which will be a pain in the tuckus and probably make me lisp, for one year after. Undetermined amounts of radiation to follow surgery. MRI, PET and lymph node biopsy between now and October 20th.

20 comments:

Luis said...

Love ya, kid. We'll be thinking of you. Let us know which pet is being scanned* so we can pray appropriately.

*I'm not actually that dumb

Anonymous said...

here's hoping that lymph node is a total fake-out, and your PET scan results are dark and boring.

sending lots of positive thoughts and general good wishes your way.

-Kori

Lynda Halliger-Otvos said...

Shite !~! I am sending as much healing energy as I can get to you....

TheBoatswain said...

Well.....shit.

Eileen said...

Big hugs - thinking about you.

Anonymous said...

just a reader wishing you good pain management & the best outcome possible

Anonymous said...

Here's hoping that "undisclosed amount of radiation" = "no radiation."

Thanks for keeping your readership in the loop- you are in my thoughts and all good vibes go your way.

Don't know if time off/finances feel like a stress, but if you had a tip jar, I'd hit it.

Also, don't know if you read Jay Lake's blog- he's a scifi writer living with colon cancer? Good writer, good cancer writer ... and, maybe, he can help you overcome your unwarranted and inaccurate biases 20-sided (not 12!) dice.

Judith said...

Lots of good wishes and big hugs to you.

VMR said...

Dear Jo, wishing you the best and sending you all the positive vibes nursing school has not yet killed. Many, many hugs from Ohio.

shrimplate said...

I wish I could somehow be there to help share the load. That's what we nurses do, isn't it?

Celeste said...

Virtual hugs a'plenty coming from me.

I'm so glad you got this thing checked out when you did instead of waiting in denial for it to go away.

I'm hoping for the most boring PET scan ever.

Jill said...

Well sweet Jesus, Jo. I don't like the sound of any of this. I wish there was something I could do. :-(

Anonymous said...

I've never been one for cutesy imagery so my chosen healing thought metaphor will be Gort from the classic sci-fi movie "The Day the Earth Stood Still". The beam emitting from the bridge of his nose is state of the art, and his ass has just been shot up with alien strength hormomes. He's walking down his ramp to zorch that MF'er Cap'n Lumpy.--- E.

Cara said...

Aw Jo, sheesh. Here I was all relieved. Well, you know what? I'll just keep praying for you.

Best wishes.

Drew said...

I almost never comment on here, but I've been reading your posts and your highly-descriptive accounts of your diagnosis/treatment course. I feel nervous and concerned for you, and yet, I've never met you!

I have, however, lost a number of relatives and friends to the big C. Then again, I have even more relatives and acquaintances who have lived through it successfully.

Best wishes to you in this time. I know it's pretty easy for you to talk about this in the third person, especially since you appear to be a born writer and are in the medical field. However, when this gets more personal (you've already said to yourself that it will), allow yourself to mull it over! Just don't dwell, but I guess we've seen from many of your posts that you don't dwell on this stuff anyway.

Your blog continues to be an inspiration. I have some friends who have recently become nurses and I've pointed them all to your blog. My little sister (who just started college) wants to be a nurse as well. Keep writing, and be strong!

Moose said...

Thinking good thoughts at you.

Also, you said "uvula", which always makes me think of this:
http://snltranscripts.jt.org/75/75vuvula.phtml

Clearly you just need the National Uvula Association to get involved! :-)

Thirddegreenurse said...

Jo, have them check out that uvula. No kidding. In fact, that's just as important as the lymph node (which means less than what people think.) Seriously.

And I know you don't want to hear this, but those RT burns can be nasty. Consider a temporary PEG placement. You need nutrition so you can heal. We wish they'd do them up front for all of our H/neck CA RT patients, but they don't. They wait...and wait...and wait...

messymimi said...

Prayers continue. I know, boring of me to say it, but just want you to know, even when I was out of town I didn't forget.

CCSutton said...

Best wishes, Jo. I want to echo what anon above said: if there is a "tip jar" in the works -- if any of your friends/family want to put that together as you manage other things -- I too would like the deets on that. You can use it for whatever you want! Massages, exotic fruits, the box set of "Cops". Whatever strikes your fancy. Would just be a small measure of thanks for the good your blog provides.

Anonymous said...

Well that just sucks big hairy donkey balls and I am sorry to hear it. Continuing to think of you and to send healing vibes your way.

Like other posters I hope that the PET scan is dullsville and that the lymphnode is just trying to be an attention whore.