Sunday, January 13, 2013

This is what I've learned, in two-plus years of no palate. . .

I got to thinking about this the other night, as I was rinsing out the enormous (well, not enormous, but it feels enormous) hole that goes directly from my mouth to my right sinus:

1. Sinuses catch a lot of stuff.

Seriously. The crap I wash out of my sinuses every couple of days would make a strong man shudder and a scientist's eyes gleam with excitement.

2. You don't know how lucky you are to have a palate until you don't.

You normal people have NO IDEA how much snot you produce. Trust me on this one.

3. I can't eat flour tortillas under any circumstances, and should probably stay away from baked potatoes, Tater Tots, macaroni and cheese, and muffins.

Some things stick to my obturator with the tenacity of an angry giant squid. Other things work their way into my turbinates, to be sneezed out a few days or a week later, causing me great alarm.

4. I am so fucking lucky not to have had to have radiation.

I had a patient today who had radiation to his face and neck and who felt pain while eating a can of peaches. Just chewing had caused a pathological fracture. The surgical response was to remove half of his lower jaw. My pal Mary is dealing with a less-horrible, but still awful, sequel to radiation. I was very, very lucky.

5. When you have something that's considered rare, information and statistics and so on change in a matter of months.

When I started the journey with CANSUH, the stats were that three of every four patients that got what I have, polymorphic low-grade adenocarcinoma, were female. Now it's four men in every five patients. Smoking and drinking seem to have little to no bearing on whether or not you get it. Endogenous or exogenous estrogen no longer matters. Spicy food isn't considered a problem, unless you get some of that Thai long pepper up over your obturator. See comment on point #2.

When I started this whole thing, the assumption was that a complete cure could be had with aggressive surgical resection. Now the understanding is that PLGA can come back seven, ten, even twenty years after resection, and even if radiation was used as an adjunct.

When I started treatment, PET scans were considered the standard for monitoring. Now, given the indolence of the tumor, doctors are questioning how effective technology is. Apparently, a tumor can get to be quite a respectable size before it shows up on scans. Now, hands-on scoping and poking is the latest thing.

Essentially, I got told during my last ENT visit with Dr. Crane that the best I could do was NED--No Evidence of Disease--forever.

Well, shit.

In a way, it sucks to go from "we have a complete cure" to "you have to be careful." In another, it's nice to know where I stand. I never really trusted that "complete cure" thing anyhow. When you've had a piece of your body removed with a bone saw, you tend to get a little spooky about confident predictions.

All of this sounds, in the balance, negative.

However: I'm sitting here, more than two years after my surgery, blogging. I just scratched my own back and felt how incredibly dense and thick my back muscles are. I'm strong, I'm fat (which, if you're in my shoes, is not necessarily a bad thing), I'm back to lifting weights three times a week and running nine-minute miles. I can do yoga without falling over much. The Boy can understand me when I talk without my obturator in, and says it's getting easier to do so with every passing month. (He takes me the way I am; I am so incredibly lucky for that.) I have all but one of my teeth; two if you count the one that was never going to erupt, since it was lying horizontally under my cheekbone.

I look normal. That is such a huge, huge thing. I sound normal. That's even bigger. Two years ago, I wouldn't have believed you if you'd told me that I would *feel* normal with an obturator in--do you remember the struggles I had? I do.

The cancer might come back, or I might get some other type. I'm half-expecting to have to say, "Mother-FUCKER. AGAIN???" when I get my mammogram this year.

The difference between now and two years ago is this: Not only do I know I can survive all the stuff that happened, I know I can do well through and after it.

I can do anything, now. Just about damn near with very few exceptions anything.


Lynda Halliger Otvos (Lynda M O) said...

Happy Two-Year Anniversary. Yes, Jo, you have proven you can do Anything - over and over you have demonstrated that nothing will keep you down. That's so wonderful.

Lydia said...

Wow, two years. Interesting how all the stats have moved, and it sounds as though you are not going to be sitting on tenterhooks 'just in case' the next review isn't NED but getting on with living your life. Something we could all do!

Glad things are going well with The Boy, restraining my enduring nosiness!!

all the best for a healthy and happy 2013 :)

Anonymous said...


JEN said...

You rock!

painting with fire said...

You are super woman - and I'm so glad! Congrats on two years!

Now Am Found! said...

in this case what didn't kill you did indeed make you stronger. kudos

bobbie said...

Happy Anniversary!! I remember your journey, and fight, with CANSUH...
Sending you hugs and wishes for a lifetime of NED.


MommyFixIt said...

Congrats on two years! We're working on it over here (breast cancer, chemo, bowel rupture, rehabbing from it all) and have noticed that both me and my partner (who was actually the one who was sick!) have realized that there is so very little we can't handle anymore. When the scary thing was 'gee, am I going to get fired? Car wreck? Kid fail a grade?' looking down the barrel of '10% chance of recovery' wasn't even something we would have thought we could think about without jibbering in fear. Now we laugh at 10% - it's that 2% chance that made us pause a bit before we soldiered on. And yes, she IS recovering. WE ARE THE 2%. *giggle*

Penny Mitchell said...

You can't get on a whale watching boat without jacking up your knee, but you can BE on the whale watching boat without turning the color of a decaying mango, so that negates the knee thing.

You can't call me without my answering the phone by yelling, "I AM DRINKING WINE." Well, you CAN, but it's highly unlikely.

You can't ever, ever, on this plane of existence or any other, have more cats than I do.

You can't be an insensitive asshole. I know for a fact that you CANNOT do that.

You can't levitate.

You can't go past a sign proclaiming that this town is named "Orlinda" without popping off with something funny.

You can't speak Russian. At this point, anyway.

You can't win the Tour de France without cheating like a motherfucker, but then, no one else can, either.

You can't not be wonderful.

I'm just sayin'.

Anonymous said...


Your comments on the changing statistics...well, I didn't have to wait that long. I had a brain tumor - you're a nurse, so I'll go ahead and name it- oligodendroglioma - and within a couple of days of my surgery, the surgeon had said this was great, very likely cured, and the neuro-oncologist had said this was great, I could live 10-15 years. I was 46.


Well, I told my internist, who laughed, and said, yeah, one's a surgeon & one's an oncologist!

There's a lot we don't know, and accepting that is a big part of the journey. Oh - I am 61 now, no recurrences, and I, too, am devoted to the gym stuff.

Thanks for your blog. I love it.

therapydoc said...

Just came here from Callbells Make Me Nervous. May you stay NED forever, old Yiddish expression. Seriously.

Anonymous said...

I just recently began reading your blog, since I'm going into nursing as a second career at age 45. :)
You are an inspiration and a joy to read! Thanks and more wishes for NED from me.