Tuesday, November 30, 2010

In Which Jo Twiddles Her Thumbs A Bit.

When a dear, dear old friend decides to grow a moustache as part of a fundraising drive for cancer research, it's best to support him.

Even if the moustache is cringe-worthy.

Like, *really* cringe-worthy.

I would rather see Abilene Rob with a 70's Pornstache (which he once threatened to grow, God help us all) than see my beloved Brother In Beer sporting facial fur again. The first would be temporarily traumatic. The second might scar me for life.

Some guys look distinguished with beards. Some guys look kinda classy with a moustache or a soul patch. BiB looks like he's come down the mountain for his annual hardtack-buying spree and bath.

Darling man, I will send you all the money you want, as long as you promise to shave.

*** *** *** *** ***

Speaking of money, an announcement:

The readers of Head Nurse have made it possible for a person from the Oral Cancer Foundation's Forums to get a Therabite that they could not afford to buy themselves.

You guys really have no idea how big a deal this is.

Trismus, or a restriction in jaw movement, affects the majority of people who undergo treatment for oral cancer. The percentages range from 54%, for those folks who merely have surgery that dislocates or hyperextends the jaw (as mine did) to 100%, for those folks who have to have radiation of the face and neck.

"Restriction of jaw movement" doesn't really cover it. My trismus is minor: I have an unforced mouth opening of about 21 millimeters (just about an inch) prior to stretching. Any opening more than that requires that I stretch, and that involves pain. Sometimes I have jaw spasms so severe that I can't sleep. Sometimes my jaw locks up as I'm eating, and I can't close my mouth for a second.

But I am LUCKY. There are people on the forums who can't open their mouths more than seven millimeters. Seven. I think there might be somebody there who can't even fit one tongue depressor in her mouth, and I know there's a person whose *largest* jaw opening is about what mine is prior to stretching.

Think of what being able to open your mouth less than half an inch would mean.

Think of what not being able to open your mouth at all would mean. You can't eat; you lose weight even with supplemental feedings. Talking becomes difficult; oral hygiene is impossible.

A Therabite, which allows a person to stretch and exercise their jaw in a measurable, comfortable way, can literally mean the difference between being able to talk, eat, and take care of your own teeth and...not.

I added up the money last night that was in the PayPal account and cried. All I'm waiting for now is to hear back from the two people I've emailed, to see if they still need the device.

You guys. You guys. What you have done is huge. You have made such a difference for somebody, and once they're done with the Therabite, they'll pass it on to somebody else who needs it, and what you did will keep going.

*** *** *** *** ***

In other news, I have to figure out how to catproof a Christmas tree. That should be interesting.

Perhaps hang it from the ceiling?

Monday, November 29, 2010

It's been a bugger-all kind of day.

Which, in itself, is a milestone.

I had two doctor's appointments scheduled today. Neither one of them was earth-shatteringly important--one was to tweak the obturator, the other a recheck for a minor, now healed, problem. I cancelled 'em both, as I didn't feel like driving halfway into Bigton and then hours and hours to Yeehawville. I'll reschedule 'em for later, if I don't rebend the obturator wires myself. I didn't sleep well last night and didn't feel much like exerting myself on the highway.

Attila the Trainer came over, and I had a nice little baby workout for an hour. Eight-pound bicep curls? Sure thing. Twenty curls on a balance ball that left me sweating and panting? You bet. Five minutes of walking--dear Heaven--at 3.5 miles per hour and I'm beat? Bring it on.

Then I had lunch and a glass of wine and a long, luxurious nap. I woke up a couple of times and drowsily petted kitty-bellies, then went outside and rubbed Max-belly, then wandered around the back yard taking measurements of various things. Then I changed my sheets.

You will note that absolutely nothing of any apparent importance happened today. I did not break any new endurance records, clean ANY of the things, stay up longer than usual, or eat any new foods. In fact, I laid around most of the day like a lump and spoiled both myself and my animals. I got out in the sun for a while and made some tasty spinach dip. That was really it.

Which, as I said above, is a milestone. Because--and this is something that I just figured out--after a Nasty Diagnosis and a Near Miss Of Something Much Worse, you tend to overschedule things. You want to make every second of every day count, and do something measurably different or better than the day before, every day. It becomes an obsession and then a habit.

Life sucks if you do that, unless you're one of those motivational authors who makes his living publishing books with lots of exclamation points in them. Sometimes kitty bellies are as important as dragging ass up a highway, or scrubbing the floor, or finishing the Christmas shopping.

Sunday, November 28, 2010

Attack (but not really) of the Old Old

"Old-Old" is a semi-official term in scientific circles used to describe people over the age of 90 (though that varies). I've met two people who'd qualify as old-old this week, which is kind of unusual in this field. I mean, generally speaking, if you're going to have a stroke, you're not going to be 95. You're gonna be 50, and something is going to kill you before you hit 95.

But lo! What came in t'other day but a 95-year-old? A sharp, active 95-year-old who (aside from a couple of minor, controllable problems) was about 60 in physical terms? That same day I started an IV on a--get this--one hundred and TWO year old who'd just had a knee scope. I had to chase that patient down in the hallway to get them back to the room so I could put the IV in.

When people over 90--and over 100--start showing up in your hospital's physical rehabilitation unit, you know there are some good genetics going on.

The 95-year-old's kids and grandkids and great-grandkids all showed up over the course of a few days, so I got to meet them. The son and daughter, both in their mid-seventies, looked easily twenty years younger (as did the parent). The grandkids, who were my age, looked 30. The great-grandkids were kids, so they didn't look any younger than they were.

It was like being faced with Lazarus Long and his family, right down to the red hair.

It was Longian in another way, too. Let's face it: if you make it past about 80 without any major health problems, you're running pretty much on genetics. Diet and exercise and not smoking and not playing with flaming chainsaws will do a lot to make your life up to about 75 healthy and active, but after that? Stuff starts to wear out. How fast it wears out and what exactly goes first is largely dependent on your DNA.

Good DNA will enable you to live as long as you're going to live with a minimum of health problems. Good *lifestyle*, on the other hand, will protect you from chronic diseases that would make your life hellish for thirty years before you died. What everybody wants is a life that's active up until the end, then a fast decline without torture.

If I were in a philosophical mood, I could turn this into a meditation about how one spends one's life, and how to make 40 years seem like 90. I'm not feeling philosophical.

It was just really freaking cool to meet two people who remembered not only the second World War, but the coming of electricity, piped water, paved roads, and telephones to their neighborhood.

Wednesday, November 24, 2010

These are the things you appreciate.

I have an absolutely redonkulous cat.

His name is Notamus. Observe:

Obviously redonk.

Notamus likes to be cuddled. When I'm sitting at this desk, watching Jeremy Brett (rest in peace!) as Sherlock Holmes, he leaps into my lap and proceeds to act as though he's Boneless Cat. His head lollygags over one of my legs, his hind legs stretch waaaay out, and he wants belly rubs.

His brother is not quite as redonk. Flashes will have none of that boneless stuff; instead, he likes to climb up my front and down my back. Cute, if it's a half-pound kitten doing it. Not so cute when it's an eight-pound cat.

Very serious.

I love my cats. They kept me from going over the hairy edge when I was stuck at home.

I also love pancakes. They're easy to eat, they're a good source of quick energy, and made with sour cream, so delicate they nearly float off the plate.

I love my dog. Duh. If there's a Zen master in existence right now, it's him.

No caption can do him justice.

I love the friends and family that I've got that have kept me from climbing the walls, and told me that I sound great, and generally been cheerleaders for me.

I love that I have a job where nobody really notices if I sound like a cross between Daffy Duck and Bridey Murphy when I get tired.

I'm happy that it's going to rain tonight and be cold and rainy tomorrow, and that I have a fridge full of Thanksgiving food that I *like*, including peach ice cream, and a nearly-full bottle of Dalwhinnie, and plenty of Jeremy Brett on Netflix, and a copy of "Young Frankenstein" that is just waiting for me to watch it.

I may only have one third of a mouth left, but I'm thankful with all of it. I hope your Thanksgiving has half as many things to be grateful for as mine does.

Tuesday, November 23, 2010

I have a lovely pair of shoes.

They're from Boden. They're plimsolls (in Boden-speak; we'd call 'em sneakers or Keds) made of cowhide. They're black with white dalmatian-type spots on them, and green satin trim.

I love them.

So, apparently, does Flashes. I heard growling and munching and snarling in the office and walked in to find him locked in Combat To The DEATH with one of the shoes.

I got it away from him. It is unharmed. He has reverted to killing his brother.

Why are my cats simultaneously so sweet and so weird?

Sunday, November 21, 2010

The one month anniversary of...well, of waking up, I guess.

I was hunting through my "All Mail" box tonight and found emails that Beloved Lotion Slut Pens had sent out to sundry friends and family on the day that I had surgery. Reading them, I cried and cried, unexpectedly, because I hadn't thought of how what had happened would look from somebody else's point of view. I also hadn't realized how incredibly comforting and calm Pens was about the whole thing, and how much I owe her for her levelheaded stability in the week after surgery.

A month ago I woke up in the morning in a hospital bed as somebody from the front desk delivered flowers. There was a bunch of orange lilies and fall leaves from my uncle, and a lovely pink arrangement with stock and roses and a daisy from The Brother In Beer. A couple of my coworkers came in to see how I was doing, and then two of the otolaryngology residents stopped by to see how I was healing. That's really all I remember.

Two days ago I stood at the bedside of one of my patients as one of those otolaryngology residents scoped her sinuses. *I* knew who *she* was, but I wasn't sure she recognized me as the person whose throat and oropharynx she had cauterized. I didn't say anything.

As she was rolling up the scope tubing, she glanced at me and said, "You look good. You sound good. Do you feel okay?" I just nodded, and thanked her for doing such a good job on my mouth.

My last words before surgery were "Gosh, it sure does, doesn't it?" after the anesthesiologist told me that the gas he was giving me would make me dizzy. My first words after surgery were "I am not going to work today. I just had surgery!" to my boss, whom I saw standing in the post-op bay at the foot of my bed.

A month ago, I freshly didn't-have-cancer-any-more, though I didn't know it. I knew I wasn't wearing the silver Braille ring I normally do, so I stretched my hand out for it and Pens gave it to me. I knew I hurt, so I pushed the magical button that Nurse Carolita had put into my paw. I tried to blog, just enough to let everybody know I was okay.

A month later, I'm still learning that I have to wear a plastic thing in my mouth to be intelligible. I leave the house occasionally without it on, and have to turn 'round and come back and grab it off the kitchen counter. I still get surgical slough out of my sinuses or throat, though it's not as bad as it was--not by a long shot--in the first two weeks after surgery. I can talk, pretty well, actually--most people think I'm at the tail end of a cold unless I'm really tired, in which case they think my cold is a bad one.

Today I'm aware that things haven't really changed all that much, unless you count the ways that they've changed completely. I'll have a plastic thing to deal with for the rest of my life. Friend Lara has just started the long road to being an ex-cancer-patient, and Friend Pens is looking forward to her own surgery later next month. My uncle is still obsessed with shooting the (highly illegal) twenty-gauge shotgun I keep in the house, and the Brother in Beer is still brewing.

I can't work as much as I'd like to, yet, and I can't eat crunchy dry stuff. My upper jaw hurts, still, where that tooth was sawed off and the bone avulsed. There's still an enormous hole in my upper jaw that leads directly into...my sinuses, I guess, that has to heal by granulation and is doing so slowly. I'm tired most of the time.

But I no longer have cancer. I have a scan coming up in January, to see how the bone in my head is healing, and an appointment tomorrow with the prosthodontist to try to make my speech even more perfect. Next September or October I'll have the first official follow-up scan to make sure there has been no recurrance of cancer.

In a year, when I get the word that that first follow-up scan is clean, I'll change my birthday as Lara suggests. It's no longer a big deal to me to celebrate the day I get a year older; I'd rather celebrate the day I got another chance. Again.

This is how you know things are getting back to normal: Sunday Afternoon Fantasy Cooking!

It's about time to work up the stuffing recipe I make every year. That's the one that has pecans and onions and celery and garlic in it, along with about six pounds of butter.

This year, I'm having only those things I like about Thanksgiving for Thanksgiving. That means mashed potatoes and stuffing, asparagus, steamed green beans, pie (probably cherry) and bratwurst.

What? You don't eat bratwurst for Thanksgiving?

Or maybe I'll go get some fried chicken in the hood the day before. Cold fried chicken with all the trimmings....or barbecue. Hmmm. Barbecue for Thanksgiving.

No matter how the food works out, the evening's entertainment will involve going to see "Burlesque" at the movie theater/bar/restaurant here in town. Nothing could top a quiet Thanksgiving in like Cher and Aguilera in spangles.

Saturday, November 20, 2010

Saturday Night Slept-All-Day, Distracted-By-The-Background-Of-The-News Music!


I am very, very, quite surprisingly tired. I had not expected this. (Yes, yes, I know, recovering from surgery, taking time to heal, body needs rest etcetera take it as read. But still. I am surprised.) Seems to me that if you can run three miles in thirty minutes and squat a hundred pounds sixty times in a row, you ought to get off a little easier after a palatectomy.

Luckily, our patients were relatively easy. Only one fight broke out between a patient and his family (why is it that the patients who shout always end up in semi-private rooms?), and that was easily settled. He had had a pretty massive carotid occlusion, so he wasn't in top form.

I really wish somebody had warned me about how hard it would be to stretch my jaw at work. I'm used to stretching about every two hours with the bunch of tongue depressors, and for two days I got exactly one round of stretching in. The end result is a major dimunition in my jaw's range of motion; I can *almost* get two fingers in between my front teeth after stretching.

However--and this is a good reason to stay in health care if you're there already--one of the speech/language pathologists at work has an old Therabite she's not using, and has offered to dig it out of her desk for me. Yes, please: saving $398 on a device I can use at work is a good, good deal right now.

Speaking of saving money, I did mention that my pink plastic prosthetic palates are not considered essential medical equipment, right? Yeah. Not covered by insurance. Which blows my freaking mind. As Woolywoman said back when I was having Major Body-Image Issues with the obturator, it's not pretty to look at, but what it does is beautiful. What in hell do you do if you don't have insurance? Seriously: without an obturator, my speech is completely unintelligible. What would some poor sot over at County General do? Hope for funding and pray that the first obturator revision was good enough?

In nursing news, I have additional advice besides "don't let a general surgeon evacuate your subdural hematoma": Don't let just anybody intubate you. And, if you do, be sure your family knows to tell the intensivist handling your care that you've been on benzodiazapenes for thirty some-odd years, so that those drugs actually get administered and you don't have a huge seizure from discontinuation. Otherwise, you'll end up with me, having stroked out your left PCA, and it'll take you a long time to be well enough to head home.

Honestly: a five-foot tall woman in her sixties is not the same, anatomically speaking, as a six-five guy in his thirties. You cannot use the same airway for the former as you'd use for the latter. Sheesh. Torn trachea? No fun.

And, in Give Me All Your Money, All Your Hugs And Kisses Too News, readers of this blog have raised two hundred and seventy-five dollars for the Oral Cancer Foundation.

Let me tell you a little about OCF in hopes of getting you to pony up a little cash:

The Oral Cancer Foundation is *the* place to go if you've been diagnosed with an oral cancer of any type. No matter how rare your cancer is, you'll find somebody on the forums there who's dealt with it, or an article in their library on it.

OCF was founded by *one* guy. His name is Brian Hill, and he survived the metastatic tonsil cancer that hit him in 1997. He posts on the forums, people, and works every day to keep OCF relevant as a source for folks with oral cancers. The whole reason for OCF's being is that Mr. Hill couldn't find jack freakin' squat out there in terms of information when he was diagnosed.

Here's why it's important--at least to me--that you donate:

I got an oral cancer for which there are no risk factors. That makes me unusual: the majority of people who get oral cancers have at least one risk factors, be it smoking or drinking or exposure to HPV strain 16. Regardless of how you end up with it, though, oral cancer is a huge, life-changing deal.

I had a baby cancer. Mine was one of the (only!) 45% of oral cancers that was found prior to metastasis to other areas. Mine was easily resected, and I didn't require radiation as an adjunct therapy. Even with those facts, my life has changed forever: I have no soft palate and I'll have to deal with trismus for the rest of my life.

Imagine what it must be like for somebody who's got to have both an oral surgery and a neck dissection, followed by radiation and a feeding tube and so forth.

Oral cancer is skewing younger and younger every year, in part because of the near-ubiquity of HPV-16 in the adult population. Imagine, then, the neck dissection and the tongue removal in a thirty-year-old.

I have $275 in a separate account earmarked for OCF. My goal is to hit $400 before the end of the year, so that I can buy a Therabite and donate it to somebody who needs it on the OCF Forums. If that happens, I'll start hitting you guys up for money every six months: two Therabites a year to people with surgery- and radiation-related trismus would be HUGE in terms of quality of life.

Donating is your own business. I promise not to turn this blog into a pledge-drive, a la NPR. If you've got five extra bucks and you want to donate it to something, consider sending it here. PayPal charges overhead to process donations, but I'm eating that cost myself. This is that important to me.

So donate, if you can and if you want to. This blog has been mostly about my mouth for the last two months, and I'm putting my money there now.

Edited to Add: Thank you, thank you, thank you! These last couple of months have shown me that I have the best readers and commenters on the Innterwebz. Y'all rock. (BTW, I'm not keeping track of who's donating, so don't feel guilty if you can't come up with the scratch. This is entirely voluntary, dudes; there are plenty of other worthy causes out there.)

Tuesday, November 16, 2010

I'm back at work, so be afraid. But not as afraid as if you'd seen that one doctor.

Just a tip from Auntie Jo to the nameless millions of future hospital patients out there: if you sustain a subdural hematoma in a fall at home, and you need that subdural hematoma evacuated, make sure it's a neurosurgeon doing the evacuating.

Because if you let just any Fred Friendly into your brainbox, it's possible things could go very wrong indeed. This goes double if you're from Teenyville, that tiny town just south of Wherezat and east of Whadyasay.

Grandma took a fall a couple of weeks ago at home and conked herself on the head. It wasn't a very big conk, or a very painful one, but Grandma, being the careful sort (and being on coumadin and aspirin), took herself to the emergency room just to be on the safe side. The folks there checked her over, did a scan, and kept her overnight for observation. This was a very good thing, because Grandma developed a subdural hematoma during the night, and her level of consciousness dropped.

Subdural hematomas are interesting creatures. They're called the "walk, talk, die" injury because of the way they present: you're fine for some amount of time, and then you're very suddenly not at all fine. You become not at all fine because of bleeding below your dura, the covering of your brain, that puts pressure on the brain itself. A brain can stand quite a lot of abuse (that's the "walk, talk" part of the equation) before it finally starts being squished beyond tolerance or repair (that's the "die" part).

Anyway, back to Grandma. She started getting wonky, so the folks at Teenyville Memorial did a series of CT scans that showed an expanding subdural hematoma.

The correct thing to do at this point would've been to ship Grandma to a larger hospital, like Sunnydale or County General or even Our Lady Of Questionable Mercies. Instead, one of the general surgeons at Teenyville Memorial decided to take matters into his own hands and evacuate that subdural hematoma himself.

Evacuations are done with suction. Careful, gentle, less-is-more suction. By qualified neurosurgeons. In a neurosurgical suite, with nurses and assistants and anesthesiologists who know what they're doing. Because, if they're not, you end up with a cowboy with a suction catheter who suctions out part of Grandma's brain.

I'll just let that sit there for a minute while we all look at it in silence.

Yeah. It made me sick to my stomach, too, and I don't quease easily.

So Grandma came to us, because of course we work miracles, including inducing our patients to regrow large portions of their frontal lobes. (Yeah, right.)

Grandma is off the ventilator now, but she'll never write another thank-you note. She doesn't recognize her kids, near as we can tell, or even follow any commands. It's an even bet what did this to her: either it was the jacked-up surgery or the intense high fever she had afterwards (which is usually a sign that something has gone badly wrong in the brain) that wasn't treated correctly.

The general rule of thumb is that, if a patient has a temporal-thermometer temperature of 40 (that's...um...somewhere about 104 or thereabouts), and that patient is an adult, you say the hell with cooling blankets and start packing 'em in ice. You don't put them in a phenobarbital coma in an attempt to calm things down.

Sunnydale Hospital: For those times when even a Dustbuster won't pick up the pieces!

*** *** *** *** ***

So, yeah: the first day back at work was a runner of a day. There were more patients than I have fingers on one hand who were on multiple drips (note to self: three four-channel IV pumps on one pole will cause that pole to tip over), there were people with interesting breathing patterns, people with crazy-ass neuro changes, and folks who hovered on the edge of disaster all day long. Add to that the usual postop cases, and we had fun.

But you know what? I loved it. Getting back to work, while it was taxing, was the best thing I could've done. I spent the day as an extra set of hands, helping everybody without carrying any acutely ill patients on my own, and it was *great*. I took two very long breaks to stretch my jaw and rest my face, and ate lunch like a normal person, with conversation and everything.

It was also nice to hear from the most critical people in the world (CCU nurses and intensivist physicians) that I sound mostly normal and look really good.

Tomorrow is another day in the unit. It feels really good to type that, and to end the sentence with the word HOORAY!

Sunday, November 14, 2010

From the mailbag: How's stuff work now?

Faithful Minon Aiden has an excellent question, via email: How do things work now, as far as swallowing and breathing go, since your soft palate is gone? What else is different after surgery?

Gracious. Where do I start?

Let's start with airway and breathing, since those are always your first two concerns. My airway is basically unchanged with one exception: I can no longer block my oropharynx off from my mouth. What that means in practice is that if I lean over without the obturator in, saliva drains from my nostrils. I also have to be careful with swallowing without the obturator in, because it's much easier for liquids and semisolids to enter my sinuses.

I cannot suck on a straw unless I hold my nose. Likewise, I can't blow out candles or blow up a balloon without holding my nose. Whether or not that will change as the obturator situation changes, I don't know. Suffice to say that for now, I have no suction capability and no blowing capability.

Aside from those minor concerns, and the fact that carbonation bubbles head straight into my sinuses, things are pretty much unchanged.

Swallowing is a little different. I prefer to eat with the obturator out for two reasons: it's easier to swallow neatly (ie, without stuff getting stuck up on top of the obturator) and quickly, and I choke less. With the obturator in, I can eat and drink fine--don't get me wrong--but it takes considerably more concentration than it used to.

It almost feels normal now to take a small mouthful of fluid and turn it into four or five swallows. I can no longer gulp liquids. Shots are right out; each ounce of liquid that I swallow equals six to eight separate swallow cycles.

I miss that first gulp of cold Perrier Citron that would make the back of my throat burn. Otherwise, no big deal.

I have a very hard time lying either on my front or my back with the obturator in; soft tissue tends to collapse around it and obstruct my breathing or trigger my gag reflex. The answer to that is, if I'm getting a massage (say) to lie however and just breathe through my mouth. It's snorey, but it works.

One of the most common side effects of a transoral surgery, and the one that concerns me most right now, is trismus, or jaw stiffening. I have a minor case of trismus, which is defined clinically as not being able to open wide enough to insert two fingers between your front teeth. Mine is classical in that the sensory portion of my right trigeminal nerve (CN5) is also affected. What that means is that I have a beard-like distribution of numbness from just in front of my ear to about halfway across my chin. The right side of my lower lip is numb, as are my teeth and jawbones on that side.

Simply put, when I'm brushing my teeth, I have to look carefully at what I'm brushing to make sure I'm not brushing the top of my newly-enlarged mouth. I can't feel a darn thing.

Eventually, with enough jaw stretches and enough time, both mobility and sensation will come back. In the meantime, what this means practically is that I don't eat in public and I stretch my jaws six or seven times a day, whether with fingers or stacked tongue depressors.

There's also some tongue numbness left thanks to the fact that my tongue was retracted during surgery. Imagine Bill The Cat--that's apparently what I looked like. Only the tip of my tongue is numb now, thank God, because before (when it was most of my tongue) it was a pain.

Overall, I have been incredibly lucky. Because everything was cauterized during surgery, the post-surgical pain was actually less than came with the original biopsy. I have the occasional ache where they removed the one tooth, and of course I wear out quickly trying to talk. Aside from those problems, though, and a pretty constant jaw-ache, I'm quite comfortable.

And, since I don't look any different, I have a lot less to deal with than I would've if I'd had an open neck dissection.

So, yeah. That's how stuff works now, or doesn't. The "doesn't work" column will have to be updated nearly continuously over the next year as the obturators change. We'll see what happens with the next fitting, two weeks from now.

Something *else* nobody tells you about having/having had cancer...

How hard it is to get back into a normal mindset.

I've been in crisis mode, reacting and planning to something horrible, since the first part of September. Now that I'm not in crisis mode any longer, I'm having a hard time functioning.

Work will help. So will getting used to the idea, gradually, that I no longer have cancer; that the worst thing I have left to do is to learn to live with the obturator and get the occasional follow-up scan. Oh, and grow my hair back out.

What an odd feeling this is, going from cursed to cured in a week. It didn't even happen in stages: it happened in one phone call, when Terri (Dr. Crane's PA) told me that not only were the margins clear, but that radiation wasn't indicated. I'm considered cured. And with that five minute phone conversation--and I didn't even have my mouth in, as the phone woke me up--I went from being a cancer patient to somebody who once was a cancer patient.

In a way, I feel like a cancer poseur. I think about Friend Lara and all the shit she has left to go through--it's the stuff I feared most: radiation and chemo. I think about asking for advice on the Oral Cancer Foundation forums, where people have it so much worse than I do.

I feel vaguely guilty for having gotten off so easily. I feel really guilty when I consider how sorry I feel for myself when it comes to things like my speech.

It's been so fucking random.

I never thought I would fear the word "cured". For all of September and most of October it was all I thought about. I meditated on the word, planned for what it would be like to be cured. I never imagined the thought of the word would make me paranoid again.

Oh, well. I guess the change in thought'll come with time.

Meanwhile, I'm going to do something crazy and paint my toenails. That's just the sort of thing that went by the wayside when I had cancer.

Saturday, November 13, 2010

Happy Saturday! I need a minute of my life back...

....so I can watch this AGAIN!

Friday, November 12, 2010

Yeah, well. Okay. Er.... .... ....Now what?

That was fast.

In a little over two months, I went from "I might have cancer" to "I have cancer" to "I had cancer."

I had cancer.

I HAD cancer.

I had cancer. Then I had surgery. And, because my surgeon absolutely kicks ass, I now do not have cancer any longer. There's a ten percent chance it might come back some day--fifteen percent at the outside--but that still leaves me an eighty-five percent chance, at worst, of not ever having this cancer again. If somebody told you, "Look, the *least* we could offer you would be an 85% chance of being cured for good," wouldn't you take it? I know I will.

What I have right now is a huge hole in my head and no time off available at work. I have debts to pay--thankfully, none of them is out of reckoning--and muscle mass to rebuild and an obturator to get used to. I have rehab to finish and speech to relearn and swallowing to perfect. I still have post-operative slough to rinse out of my head every night, but that's lessening considerably as the days go on. I have jaw muscles that are responding very slowly to Flexeril and a stretching routine.

I've also got anxiety attacks. For some reason, they started about a week and a half ago, just as I was pulling out of the Lortab-induced fog I'd been in. I don't know why they didn't start before surgery; Beloved Sis has the theory--and I think it's a good one--that I'm suffering from some form of PTSD. Somehow, everything worked itself out in such a way that my anxiety over matters could reach a peak with every new development, and now that I don't have any new developments (except not having cancer), the anxiety is free-floating and looking for a place to land.

I have grief. The tumor somehow was smaller in person than it looked on any of the scans that pinpointed it. Don't ask me how that's possible. I mean, this particular tumor is quite susceptible to immune function; maybe we all did something right. I can't explain it logically, but again, I'll take it.

But that means that I lost a whole lot more of my mouth than I probably needed to. Don't get me wrong: I am not complaining in the least. The trouble with low-grade tumors is that they don't respond well to things like radiation; therefore, getting it out with good margins was exactly what I wanted. I told Dr. Crane that I liked aggressive, that aggressive was good, and I'm happy with the results....

......but I miss my uvula.

I have a whole community of new friends thanks to this. People who have rare cancers tend to really stick tight to each other.

I have yet another second chance. I've gotten so dadratted many of 'em, you'd think they'd've worn out by now, but here's another one.

For now, all I have to do is keep putting one foot in front of the other. These next few weeks may be harder than the last few, as everything gets shaken out into the new normal. All I have to do is get well, and get strong again, and get used to breathing past a plastic plate.

Later I'll integrate the Old Jo, the New Jo, and the Jo that had cancer for those months. Right now I'm going to eat and rest and watch some Jeremy Brett Sherlock Holmes on Netflix.

Thursday, November 11, 2010

It's Official.


I just spoke with Dr. Crane's office.

He took a lump of tissue out of my head that was 3.5 by 4 cm for what turned out to be a half-centimeter, low-grade (confirmed by surgical pathology, hooray!) tumor. The margins were clear. I will not need radiation, only follow-up from here on out to confirm no recurrence. Recurrence is rare with these types of tumors, especially when they're confirmed low-grade. Call it ten to fifteen percent.

Thank God.

I'll have a CT scan in January, then follow-up scans at intervals to make sure that nothing's come back.

Ten-year survival rate here is 95%.

The last bit of anxiousness just unknotted itself from the middle of my chest. For the first time in what feels like a very long time, I am crying happy, thankful tears rather than lonely, frightened ones.

Thank you all for being behind me during this.

Wednesday, November 10, 2010

It's Wednesday.

xkcd: "Mutual"

Tuesday, November 09, 2010

"It's a Rygellian Palate-Perforator," snickered K'Plakgh, evilly. "One minute in your mouth...

...and you're no. Longer. Talking. Like. JAMES. T. KIRK!!!"

(*cue evil Klingon laughter*)

"I'm not even Canadian. What the heck is he talking about?"

Rygellian Palate-Perforator, about to crawl away.

R.P-P. from the...er...left side, I guess.

Yeah, that was the left side. This is the operative, or right, side. Poor Dr. DDS was gobsmacked at how much space there was in my head (shaddup). Which is why this post has a Star Trek theme. "The Inside of Jo's Head, or, SPACE..."

One dead Rygellian Palate-Perforator. The blue stuff you see is part of the modifications made to this obturator the first time it was modified.

And, on a brighter, non-cancery note,

Look at this. Just LOOK at this.

That is Anna from Door Sixteen, looking amazing in a color of lipstick/nail polish that I have always wanted to wear but am banned from by virtue of being a freckle-faced redhead with blue eyes.


If you go to MAC or Sephora and you've got my coloring and you try on that color of lipstick? A huge claw comes down out of the ceiling, like in one of those stuffed-animal games, and grabs you and throws you out in the street.

I think it's the same claw that comes down and grabs you if you're in Hot Topic and you're over 35.

But Anna looks amazing. And, as pale and wan as I'm feeling right now, I really envy her.

Well, no wonder I feel like shit and I'm crying all the damn time.

Post Weight-Watchers weight, achieved after five months of careful Points counting and attention to nutrition: 171.5 lbs. (20 lbs down from original weight)

Pre-surgery weight, after I'd gone off WW and eaten ALL THE THINGS in preparation for I-didn't-know-what at the time: 190.0 lbs.

Weight on day of surgery, October 20th, at 5 am after having been NPO all night: 189.4 lbs.

Weight today, November 9th, at 1730 pm, after two meals and a slice of cake friend Adam brought:

170 lbs.

I still have 20 to 30 more pounds to go before I'm even in spitting distance of my "ideal body weight", but I think it might be time to, you know, try to arrest this free-fall and turn it more into a slide.

Happy Birthday, Carl.

This story never fails to make me cry like a baby.

Monday, November 08, 2010

Obturator update, and insight.

Dr. DDS saw me today for what is Surgical Obturator Re-fit Number...uh, three? Yeah. Three.

Just so that we're all perfectly clear on this, I will eventually move from the surgical obturator to what's called an "interim" one, and then, in about a year, to a "permanent" obturator. The function of this particular widget is not only (I found out today) to keep me from schnozzing stuff and make me intelligible when I speak, but also to help remodel the tissue in the...well, whatever cavity that is now. Oral cavity, still? Maybe.

Anyway, this surgical obturator is also supposed to help remodel healing tissue as it heals. If I'm to wear anything practicable, the muscles in my mouth and throat are going to have to learn to deal with something that's always there, and the tissue surrounding that *thing* will have to get used to it.

Some of what's in store for me today became clear when I popped the newest obturator out of place simply by swallowing. Turns out my tongue is a little too strong for your usual obturator molding. Who knew? (Don't answer that.)

I also had a nifty little insight that was brought about by talking to Nurse Ames and Beloved Sister and Friend Pens, among other things.

This has been a hard week. I'm not going to lie to you: since last Tuesday, I have cried every day. Some days I've barely gotten out of bed. I've been alternately barely functioning and not functioning at all, filled with hopelessness and self-loathing and wishing everything were different.

I realized part of why that was today: My last clear memory, my last clear, day-long memory, is of the Monday before my surgery. Thanks to the wonders of modern drugs, I have spotty amnesia from Monday night on, and feel totally disconnected to what I do remember of my recovery time after surgery.

So, basically, I woke up a week ago and it was like waking up immediately after surgery, except I was all alone, and I felt okay. Except for the whole missing-bits part, and the now-what part, and the survivor-guilt part, and the body-image-fuckup part.

I remember going to the grocery store on Tuesday, and having a really weird time there. I remember clearly sitting and praying with Ginny The Inappropriate Chaplain in the preop holding area, with my mom and sister and Pens there, and having argued with her that that was breaking the rules, that there were too many people in there. I remember riding to OR 2 on the gurney, and having a nice conversation with the nurse who was pushing me. I remember sliding from the gurney to the OR bed and being strapped in and joking with everybody.

I remember waking up to the most gorgeous arrangement of pink stock and roses and carnations, and seeing my boss at the end of my bed in post-op, and texting the Brother In Beer that everything was well, it was all done, and by the way, while I was under the influence of Dilaudid, would he marry me?

I remember how good iced tea tasted when I dribbled it down my throat that night, using a straw to swallow about a dribbled cc at a time. I remember seeing the doctor and reassuring him that I was well enough to go home.

After that, things kind of fade. And I woke up on Tuesday and was alone, and hungry, and I felt okay, except there was this *thing* that, I noticed suddenly, wasn't helping me talk very well.

You've seen the rest.

I was going to spend the evening taking pictures of The Cavity and the obturator, so you all could see what's what, but I've decided instead to watch "Blazing Saddles" and eat leftover quiche.


Sunday, November 07, 2010

Good night, and sweet dreams.

Odds and Ends, Bits and Pieces...

It struck me this evening that, given all available evidence, my surgeon is actually a Doctor in disguise. He has two sidekicks, one with a walleye and one who looks like the Hunchback of Notre Dame and sounds like he ought to be punching cattle; he stoops when he walks and looks as though he's only just taken off his stripey scarf; he seems familliar to everyone, even if they've never met him.

I need to take a closer look 'round his office next time I go back. There might be a TARDIS I'm missing.

*** *** *** *** ***

The 20th century finally caught up with Chez Jo. I discovered the joys of Netflix Instant last night, and watched "Star Trek" (the new one) with a cat, a blanket, a box of wine from Target (don't scoff; the pinot grigiot isn't bad), a hot water bottle, and a bag of Glad Corn. Provided the wine holds out, I might never leave the house again.

*** *** *** *** ***

Oh, and I found the Kindle. I lost it the other day, right after I finished "Pride and Prejudice", and only just found it after looking for the *third* time under the couch cushions. Friend Anne had convinced me that the cats had stolen and hidden it.

*** *** *** *** ***

Did you know--I did not--that there was an eleven-percent increase in the number of women who got oral cancer in 2008? More and more of us are under the age of 60, too--the greatest growth of new diagnoses for women in 2009 was in women aged 40 to 50. That's probably due to the prevalence of HPV infection, and the fact that it takes some time for the virus to do damage to mouth and throat tissues. All of this makes early detection that much more important: caught early, your chances of surviving even the nastiest oral cancer are 80% or better; once it hits a lymph node, they drop. Substantially. To the point that "get your affairs in order" is sometimes good advice.

I, of course, had to have a cancer that not only doesn't have any risk factors, but is almost impossible to induce in a laboratory setting. Bah, humbug.

*** *** *** *** ***

Go to the damn dentist, is what I'm saying above.

*** *** *** *** ***

Speaking of which, I have to write my hygenist--the person who found Cap'n Lumpy--a thank-you note. I want to wait until after I get a solid on whether or not I'll have radiation, though. Due to the fact that everyone associated with my surgeon is a goofball and I am too, we *all* misread the calendar. Tumor board meets this coming Wednesday. You all know what to do.

*** *** *** *** ***

Years ago, I blogged about a weird aspic I'd had at L'Express in Montreal: pureed broccoli and cheese of some sort, in a clear, chicken-broth-based gelatin, served warm. I'm going to try making that this week, just as a sort of fuck-you to the Land of Soft Foods I'm stuck in.

And that is all. Good night. I'm going to sleep tonight under a mound of mammals.

Friday, November 05, 2010

Imagine me ripping my shirt off, hollering at the sky:


So today I went out to someplace other than the doctor's office. I did not manage either yardwork or a Goodwill stop, but I had good reasons for both: First, there was no yardwork to be done. I thought the yard might need mowing, but it didn't. And second, I totally forgot I had a trunkload of stuff to go to Goodwill.

My bad.

But I went to Target! And I had an interaction with somebody I didn't know! And it didn't end with them looking at me funny and saying "WHAT???" a lot and me leaving in tearful frustration! I now am the proud owner of a Waterpik tooth- and gaping-hole-cleaning device, some baking soda, some sea salt, and a bottle of wine.

And I went to My Favorite Place and saw My Favorite Bartender/Minion/Student (yo, A!) and it was okay. I was very, very tired by that point, so I came home.

All in all, I got three things done that I really wanted to: I managed 30 minutes out in the sun with Max, pumping up my stores of vitamin D and using my muscles a little bit. I got fatigued just rolling up an extension cord; that was a little scary. I also got out of the house and got a Waterpik, which looks like it'll be easier to use than the current nasal rinse system I've got. And I got to see A., who saw me last on my discharge day from the hospital, when I was still cross-eyed, drooling, and pale from lack of blood, and reassure her that I am indeed okay.

And I dressed up to do it all, too. And I showered. So not only was I wearing clean clothes, but I was clean myself, and my outfit looked like I hadn't dressed in the dark.

You guys understand, of course, that that in itself is a major win for me.

My goals for tomorrow are, no kidding, to drink eight glasses of water and eat two high-protein meals and a green smoothie. Seriously--this is what it's come to. I am not eating enough. Up until now, my protein stores have been more than adequate (and probably would continue to be so), but I'd rather burn fat and glucose for energy and use protein for healing rather than burning muscle for all.

And go grocery shopping. I'm expanding the list of "things that are acceptable to ingest pureed". Hmmm. Tuna and beets? Don't mind if I do! Moose Munch and vanilla yogurt? Bring it on! Corn, black beans, sour cream, and a little cheese? Sure!


I just had my first phone conversation with somebody who has never met me, has no experience in dealing with people with OC, and he understood everything I said. I only had to repeat myself once.


Thursday, November 04, 2010

What I Did Today, By Jo

I slept nine hours uninterrupted, woke up at a reasonable time, didn't remember any horrible nightmares (two nights ago, Terry Richardson tried to crush me under a piece of modern art that was supposed to resemble a ham sandwich), and actually ate something. Well, drank something: it was pureed, but it was calories all the same.

Then I got some laundry done. Then I cleaned up around the joint a bit, stretched my jaw, massaged same, put a heat pack on same, and dealt with some email.

Then I took a nap. When I woke up, I realized that the dude I have to deal with next week at the credit union is someone with whom I had decidedly unfriendly relations with in high school; maybe the years will have mellowed us both.

Max was grouchy, so I played outside with him a bit. Playing with Max is a lot like....well, it's hard to describe. First you have to greet him and exchange hugs, which involves him lowering his head and putting the top of it flat against your legs and *pushing*. Then you can play Herd The Human for a little bit, but then it's time to say hi to the other dogs in the neighborhood. And then comes Belleh Rubbins, and then more Herd The Human.

Answered more email. Chatted with Friend Lara a bit and decided that if ever the asteroid hits, she will be on my team. Answered email from work and from Dr. Crane's office (still nothing on the radiation front).

And then I Made Myself A Sandwich. Yes, friends and neighbors, I am practicing chewing again.

It was....um. It'll be some time before I'm able to eat in public again, let's just say. My mouth doesn't open very wide the first few times I open it, even if I've been stretching, so everything sort of has to get squooshed at first. Later, the jaw muscles loosen up, and it's easier. But right at the beginning? No good at all. It's like watching a very small child feed themselves.

And in between all these activities, and sometimes during, I found myself bursting into huge, wrenching, uncontrollable sobs. As Beloved Sis puts it, all the drama has passed and the cleanup is here, and after this comes the trudging along, and I'm having to do all the cleanup and trudging on my own.

Feeling this shitty, even for only two days, is both surprising and frustrating. Today was better than yesterday, yes, even if it was only marginally better. I'll take whatever I can get in terms of betterness, honestly, but it would be nice to bounce back a little faster. (There goes that impatience with healing, all the way 'round.)

Tomorrow will be Errand-Running, Goodwill-Dropping-Off-At, Grocery-Buying day. Ed and Anne are coming over on Sunday for brunch as we wait for the results of Adam's half-marathon debut (Ed, if you're reading this, answer the message I sent you on Facebook, willya? Thanks). Saturday, I'll be getting my hairline neatened up by the same neighbor who cut it, and maybe some highlights added, per friend Rob. ("You need some highlights," he said. Well, okay then.)

And Monday I'll see if I can be more fully obturated yet. Cross your fingers and fork your tongues.

This is very much like being at the bottom of a well. Yesterday and earlier today, I couldn't see *anything* except the walls of the well. They weren't even reflecting light. Tonight, things seem somewhat lighter, but I know it'll take a few more days before I even feel like crawling up and out of the well. I knew this would happen--really, it's one of those things that you learn about in school and see in your patients--but I didn't realize how incredibly powerful the down-ness would be.

This last week will be something to keep hold of in the back of my head for my patients, later.

Wednesday, November 03, 2010

Oh, it has not been a good day. Skip if you're not in the mood for a downer.

One of the things they ought to tell you about having surgery anywhere above your collarbone is that you're going to hurt in a lot of different places, all of the time, in varying degrees. Eating hurts. Not eating hurts. Taking pills is okay, provided you don't get them stuck in one of the new bits of anatomy you've gained in your throat. Flushing all the crap you've just eaten out of your various surgical wounds and defects (how I love that term) hurts.

So you do what you can while you're not too tired from the pain meds, but you don't want to get really involved with anything, because when are you going to hurt? If you're away from home and you start hurting, then you'll have to get back home to take care of it.

Plus, you'd have to talk to other people when you go out. And that's not feasible at the moment. You can't talk. I hate opening my mouth. It's embarassing.

I emailed Dr. Crane's nurse today to give her a progress report and let her know when I planned to go back to work. I saw Dr. DDS yesterday, and had hoped that I would get a new speech bulb, but apparently I'm not healing fast enough, even with all the supplements and good (pureed) food I'm eating, and as careful as I'm being to clean all those defects and stuff.

I won't get a new bulb until Monday at the earliest. I have to go back to work the following Monday, because all my time off will have run out, and I really don't want to have to do short-term disability. Besides, I'm bored. I'm bored to tears with being here at home, except for short trips, and not doing much.

But. Back to Dr. Crane's nurse: he met with the tumor board today. I've been loath to publicize this too much, but his personal opinion after surgery was that I wouldn't need radiation. Given his experience and how aggressively he resected the tumor, and the brilliant pathology report he got back, he said, "I wouldn't do it if it were my own head." He wanted to talk to the tumor experts, though, just in case they had a different point of view. I'm young and yadda yadda.

He didn't call. I don't know if it's because the news was good and he thought it could wait, or the news was bad/mixed and he thought he might need more time to talk to me. I learned today when his nurse told me he'd put my case up in front of the tumor board that the terror you feel never changes in type, just in size.

And now I'm scared, because I have yet another damned wait to wait through.

I don't know why I'm not healing faster. I want to heal faster; I'm impatient. Nobody's said that anything looks wrong; Dr. DDS said yesterday, in fact, that he wished he had more patients like me. I want to be able to talk. If, a year ago, you'd told me that I would be jonesing, impatient for a crude acrylic lump on the end of a slightly-less-crude plastic thing that would enable me to sound like something other than the Elephant Man, I would've been stunned.

I hate eating pureed food. It's not worth it anyhow; because of some way that they put the retractor on my tongue and cranked my jaw open, I don't have much of a sense of taste. That'll come back, but nobody knows when. Plus, it hurts to swallow, and chewing is out of the question. I'm sitting here glaring at this glass of fucking pureed black beans and wishing I cared enough to want a burger.

I hate walking into the kitchen every night and taking out the prosthetic and scrubbing it with dishwashing detergent and a brush. There's a lot of slough that builds up on the thing, and given that it's the floor of my sinuses, it gets pretty damned gross. Tonight I scraped off the usual crap and realized that I'll be doing this for the rest of my life, or paying somebody to do it for me when I get too old to see it.

This is the end of middle-of-the-night pillow-talk, too. Friend Lara and I were talking about this today, how a cancer diagnosis and surgery and everything else can make you feel distinctly un-sexy, even if you've not got cancer of the ladybits. How the hell do you tell somebody that you've got a scary plastic part before they discover it, as it were, for themselves?

And, since I've been single for a year and a half now, it brings up the subject of dating after a cancer diagnosis. That ought to be fun. That's something for the future, though; not so much in the spirit of Not Borrowing Trouble as it is I'm Just Too Damned Tired. Still, this is another scary thing: going through this without a partner has been lonely enough that it makes me wonder what the hell people who are single most of their adult lives do.

I hate hurting all the time and being vaguely stoned from pain meds. I hate not being able to gulp down a glass of water when I'm thirsty. I hate having to eat and drink everything lukewarm. I hate it that I'm not at My Favorite Bar tonight with Joanne and Willie, watching hockey and eating a burger. I hate waking up at three a.m. being scared something awful will happen, then not being able to get back to sleep for hours, then sleeping until noon.

I thought things would get better once I'd had surgery. It's a huge milestone, right? But now I'm back in cancer limbo again, waiting to see what the big-brains at the cancer center think about hitting me with beams, waiting for my throat to heal up enough that I can get a fucking plastic piece with wires on it to enable me to speak (obturator, I hate you and long for you all at once), waiting to stop being alternately energetic and exhausted, or achy and stoned.

Yeah, yeah. I know. Low-Grade. I keep thinking that, and trying to be grateful, but let me be honest: It still sucks to be missing part of your mouth and throat. It still sucks to be waiting for news. It still sucks to manage the side effects of the medicines you're on and the stuff they gave you in the hospital. It sucks to hurt. It sucks to be alone in that nobody you know can sympathize, really.

Even tough, strong, brave, upbeat people get the blues. This is what that looks like.

This is what Terri's suggestion made me think of:

Grunt Doc's post on his own Wasabi Mistake, back in the day.

Seems to me that the Wasabi Mistake Excuse is going to get dragged out the most. It is, after all (as Grunt Doc says) a public service of sorts, to warn the uninitiated.

My favorites so far:

(And I *do* plan to use these)....

Laura's: "This is the first step in my transformation to Ms. Potato Head. Next I get the interchangeable eyeballs!"

Wayne's: I'm torn between "the dark side of Chipotle" and "the first part of my dolphinoplasty."

Memune's: "I got attacked by the *one* zombie who flunked anatomy."

Mysis, for referencing Young Frankenstein: "What plastic thing?"

Gossamer: "Turns out hedgehogs aren't edible."

Birdergirl gets a big hand for "It's where I plug in my flash drive."

Bonnie, for referencing Prince Alberts--that one I can only use around coworkers.

Terri's: "I thought the wasabi at the sushi place was an after-dinner mint (or guacamole)."

Monday, November 01, 2010

Things I Hate: A Semi-Annual List, by Jo

I figure I get a chance now and then to be po-mouthed, right? Considering how well things have gone, and how on the right side of all the statistics I've been, and (overall) how little screeching and yelling I've done about this, I can be grouchy. Right?


Well, I'm gonna be. So pish tosh if you don't like it, and go elsewhere. I hear Cute Overload is good today.

Things I Hate, the CAN-SUUUHHHH Edition:

1. Clindamycin.

That might be a weird thing to put on the top spot, when you consider the barrel of fun that CAN-SUH is, but let me tell you: as nice as Clindamycin might be as a post-op antibiotic, it is NOT nice to the rest of your biota. Everything else, if you know what I mean and I think you do, suffers disturbances in pH that will make you very sad indeed.

2. Sounding like Steve Urkel.

For about the first twenty hours after I got ObTurator 1.5, I sounded great. Then my throat continued to heal and the tissues shrank some more. Now I sound like Urkel with a mouthful of taffy. Luckily, I'll get this refitted tomorrow, and problem solved! For the next 48 hours.

3. Stretching my jaw.

This? Is no fun. I have this stack of tongue blades, remember, that are all rubber-banded together, and I have to use them to stretch my jaw open. The trouble is that it hurts, and more than that, there's no real *gain* from all the stupid stretching.

As Dr. DDS puts it, jaw muscles are "recalcitrant", so they tend to stiffen up within a half-hour or so as soon as you're not actively working on them.

Plus, I wonder: did the surgeon just cut one side of my jaw muscles loose? Can they *do* that? Someday, I would like to see what, exactly, they did to me. Meanwhile, ow ow ow ow.

4. Drooling and schnozzing.

When I take the obTurator out, what I call "schnozzing" tends to happen: if I lean my head forward even the tee-tiniest bit, saliva drips from my nostrils.

I know, right? HOT.

I can't wear the obturator all the time, because my throat and so on are still getting used to it, and I get sore. So I take it out, and I schnozz. Then I put it in, and because it's an extra something in my mouth and my lower lip is still numb in a spot, if I'm not careful, I drool. Then I get overly conscious of how it's fitting, and I take a drink of something, and for some reason it comes out my damn nostrils AGAIN, and right down the front of my shirt.

I'm not staying away from work because I'm stoned on pain meds or because I can't talk. I'm staying away because I haven't yet learned how to manage this mouth-half-plastic thing.

Speaking of which....

5. Going out in public.

I hate it. I look perfectly normal. There's nothing obvious wrong with me. The minute I open my mouth, though, and say something like "Gooh gahnnnngack! Mmmguh uh uh hrrk aaghmuh?" everybody knows Something Is Up. I either get weird looks, or Oh, The Poor Dear, Isn't She Brave looks, or people asking questions.

That last is not so bad, but...(and this is not something they'll tell you pre-op) talking with one of these things in is hard. You get very tired very quickly, and your speech quality goes to shit, because you're having to use all these healing muscles in new ways. Friend Rob asked the other day what it was like to have my nose so involved in my speech, and he has a point: the front of my face gets exhausted within about five minutes of starting to talk.

6. Trying to eat.

Practically impossible. I've pureed everything that can be pureed, and I've even pureed a few things it probably wasn't advisable to, and I'm tired of it. Tonight's dinner, which was supposed to be pureed spinach and artichoke hearts with cheese on top of a baked potato, went back in the fridge, untasted.

Eating, like speaking, is exhausting. Nothing tastes very good, and given that parts of my mouth are still numb, it's hard to tell if I'm pocketing food or not. Eating out in public is weeks away at best, because I certainly don't want to be in a restaurant and suddenly have whatever I'm eating exit through my nostrils.

Plus, chewing and swallowing hurts. I would kill to be able to eat a salad, a potato chip, anything crunchy. As things heal, my teeth begin to feel misaligned, and biting is really tough.

7. The next ten years.

Of all the things I've dealt with and all the stuff I've left to face--the possibility of a recurrance, the possibility of radiation (won't know about that until Teh Itty-Bitty Tumah Committee meets this wekk), the fact that an obturator is now a permanent part of my life (Dr. Crane says reconstruction is a no-go; they had to take too much), this is what scares me the most.

Like, how the hell do I explain to people who didn't know me before why I have a big plastic plate in my mouth?

This is not something that you necessarily want to bring up on a first date, but it *is* something that's going to have to be addressed at some point (if I ever date again, which I might not, given the Epic Drought that's been goin' on). I've had cancer, I have a scary plastic part. I talk funny. I have to take this thing out and soak it in a glass of water at night, and irrigate the inside of my head: Sexy!

Also, what to say to people who I don't know very well now, but will eventually hang out with a lot more? Should I get a script down? I ask not only for my own comfort, but for theirs: I don't think they'd appreciate it if I responded to "Oh, you're so brave!" with a poke in the kisser.

And what the hell do I do if it *does* come back? I was reading some message board somewhere, and somebody about my age had the same diagnosis, and went two years disease free, and then boop! It popped up again. I left the computer, took out my obturator, and vomited very calmly for a few minutes. I cannot deal with that possibility yet.

Should I get one of those Medic-Alert bracelets that says I have an obturator? I'm being serious.

When will I feel like myself again? Will I ever? I'm in cancer limbo at the moment, unsure if there'll be any further treatment plans or anything else to do. Cancer Limbo might stick around until I get a five-year all-clear, or a ten-year. I just don't know at this point.

And that, friends, is where I stop with the po-mouthedness. I mean, to look at this logically, I have come up on the good end of all the statistics I've run across so far. With any--hell, with MY--luck, shaving my head prophylactically will turn out to be nothing more than a waste of good hair.

Dammit! Why didn't somebody correct me?

It's obTurator.

Now I feel like the world's biggest goofball.

Can I use Lortab as an excuse? Or the fact that I'm originally from a planet with no T, only D?

Grumple, smarl, qrouch, grumple!