...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.
40 comments:
Good grief lady. If this is your b!tch list you're a much bigger person than I. I'd say you've earned this and much, much more po-mouthedness.
Can't give you much help I'm afraid. Although I would say you could always point new friends to this here public journal of your trials and tribulations. Might as well save your voice.
As for the bracelet - I'd say ask Dr. Crane or Dr. DDS. Or got any EMT friends handy? If not, I can ask mine for you.
That is the mother of all lists.
You had me at number two then three and definitely six.
Really, of course, the whole list...
You have been magnificent as far as it appears on this side of the CRT.
First - you are amazing. You are handling all this change and pain with not only your characteristic wit but with an honesty that is very refreshing.
Second: Schnozzing sounds hilarious. Please post video:)
The Medic-Alert thing is a very good idea, actually.
And I know it's very easy for me to sit here and ask you to not borrow trouble, but...don't borrow trouble. It's been paraphrased a billion times: I don't know who originally said it, but, "Worrying is like praying for what you do not want." And on a more practical level, here's what I always ask myself: Is putting thought into this now going to change the outcome?
And possibly the most important thing of all is this: The word verification code for this post is "PRICK". That's what your cahn-sah WAS (not "is") and on top of that, it was a really small little ineffective prick at which I point and laugh.
I love you ALL THE THINGS.
As someone who had her kidney removed 3 years ago b/c of kidney cancer, i can tell you that cancer limbo will always be with you, but gradually you stop thinking about it unless forced to. You're vigilant about your scans and checkups, but in between them, you tend not to focus on cancer too much. I think it's a defense mechanism, and it's a good one. Eventually, yhou even get to the point where an itch is just an itch and a cough is just a cold or an allergy.
I can't believe how awful the treatment has been and how little you have bitched about it. If it were ME, you'd be sick of me by now. I have no gumption. You have true grit. I'm sorry this has happened to you. It just sucks.
On the recurrence possibility--likely you already know this, but if not--as to radiation, proton beam therapy is much less damaging than the radiation that most hospitals offer. Loma Linda, southern Calif, is one of maybe six facilities in the country that offer it; my husband was treated for prostate cancer there; they are incredible, supportive people. If I ever am diagnosed with any kind of cancer, I'll check with them first. We met patients there for treatment of other kinds of cancer--a woman from Canada with brain cancer, etc.
I'm calling for an open contest for how Jo can explain the extra hole(s) in her head. The easiest way to avoid the "oh you're so brave" reaction is to make them think you're a nutter. Winner gets...um...to be Auntie Jo's new bestie?
Rules:
1) No mention of cancer.
2) Profanity welcome.
3) The weirder the better.
My entry: this is the first step in Jo's transformation into a Ms. Potato Head. Next step will be the interchangeable eyes!
you are smart smart smart and funny funny funny and that is sexy sext sexy
Just blame shaving your head and dying it red as you were going as Annie Lennox for Halloween. Besides you rocked it better than she ever did.
GET THE BRACELET!
But, really Jo the Medic Alert company has risen above the old standard of stainless steel. You can get 14k gold, sterling silver or, hippie beads on a leather thong (no not that kind of thong). Oh yeah almost forgot about the Swarovski crystal they are making them out of too. Seriously. They are very fashion forward now. Try 'em, you just might decide to like 'em.
Jo,
My mother was shot through the neck about 10 years ago. She lived and is doing okay but it was extremely difficult for a time and she still has problems.
Don't be scared by the future. The radiation and everything else... well, don't borrow trouble. The obturator and accompanying stuff will get easier. It may not seem like it now but you will adapt and it will get easier.
As for dating, hey, it might be a plus for the guys who enjoy some oral stimulation.
Okay, so you're not brave, but you do, indeed, RAWK! You be po-mouthed all you want.
Jo
Get the Medic Alert bracelet, god forbid it be pressed into service but it might come in useful in, um... the kind of situations where someone might check if you have a MedicAlert bracelet on.
Also: card in your wallet with summary of what's gone/going on, and the complete version (half an A4 page) taped firmly to your fridge.
To follow up to Anon at 2:31, DON'T get a MA bracelet that's so cute and trendy that a paramedic in a tizzy could miss spotting it.
Communication: collect some buddies and go learn sign language. I feel that all nurses should be trained in the basics of ASL anyway, and it'll give you a non-fatiguing no-tech alternative to speech for when you've more to say than your newly renovated cakehole can cope with.
I second Simon's opinion -- you are smart and funny and that is SEXY! The rest will take care of itself.
(((baby)))
It was #10 that got me. I'm so sorry about the perma-rator. As awful as a reconstructive surgery would be to go through after getting healed up, I was hopeful it was an option.
I'd ask about the bracelet, in case it makes a difference to somebody treating your airway at some point. It's so true, there are pretty ones you can have now, or get yourself a series of interchangeable bands.
I say give yourself some time. This has all moved VERY quickly and you are what, a month into it? You need time to heal and then move towards acceptance. Is there online support for the obturator community? If not, maybe that is something you would like to spearhead--creating one. Forum software is easy and relatively cheap to run online; PHP forum package is what I've seen offered the most. Think about it. There may be a lot you can offer that way, and you never know if it might be a way to meet somebody who completely understands because he's been down that road. Just sayin'.
You have every right to sing the blues and everybody going through cancer eventually has to. Better out than in--that old maternal chestnut applies to pent up feelings as well as other less mentionable things.
Hugs to you.
For Laura's contest:
"I got it in the war."
"Chipotle. It's got a dark side nobody's talking about. Do you like chipotle?"
"I have terrible allergies. I had this done so I can suction out my sinuses and finally get some relief."
"It's the first part of my dolphinoplasty. Soon I'll have a blowhole, and then swimming will be _so cool_."
Clindamycin = GI woes. Are you able to tolerate yogurt? If so, try that to help your intestinal flora get back to normal. Be sure to get the kind with active culture, if you try it. I suppose kefir would work too, if yogurt isn't an option.
Is there a book in this ordeal that you're going through? Your experience is outside the realm of the usual medical memoir. Not to dismiss those, but you've had to make, and will continue to make, some incredible adaptations. Given your writing talent, I think there would be interest there.
Finally, you're still pretty early post-op, and I'm hoping that things will continue to improve for you. Oh, and get the MedicAlert bracelet.
Wayne, I love the Chipotle and dolphinoplasty ones. Keep 'em coming, please.
To everybody else...I seem to spend as much time thanking the people who read this blog as I do writing it. Again, though, thanks. I feel a lot better. You're right, it *is* early: this is Day 13 post-surgery. I'm just impatient as all git-out.
Must...go...shower....now. Otherwise, Dr. DDS will never let me in to his waiting room again.
I really feel you on the talking/getting tired thing.I spent 3 months vented and in a coma,learning to talk/eat again was HARD WORK,yeah all caps.Do what you can and then they all better learn to read lips.Sign language sounds good and would come in handy for other things too but hopefully you'll be able to talk as much as you want long before you become proficient in it.
As for #7,dating and meeting new people,just take it as it comes.I was dx'ed with AIDS 6-7 years ago,talk about a dating disaster.I've found that there are no hard and fast rules for revealing certain things about your life,take it easy.If it comes up naturally so much the better,but it a judgement call on your side with each new person you meet.Like you I don't want "oh poor you" or "you're so brave" and definitely not looking for "you must be a real slut" but what can you do?This is your life,no need to explain or apologize for it.
The best advice I can give is this,take a deep breath and treat yourself gently.
wv gascides,is that what you get from the clindamycin?
Will you feel like yourself again? No. But you'll get used to being who you will become. And it will be good.
How do I know? I've been living with melanoma off and on for two and a half years. Stage IV since June. And I'm not dying. I'm more alive than I was when I was well.
My best to you, always.
What is it about cancer? I mean, really. We all go out and cross streets with traffic, ride in cars that go really, really fast, ride on buses rife with germs, try out scuba and other risky things. We all know people who have had really horrid other illnesses. More of us will, eventually, die from heart disease. But we don't seem to see all those nasty risks the same way.
Somehow that diagnosis leaves us with a dread of the recurrence that even heart attacks in high risk types does not.
As a brain cancer "survivor", I'd like us to get past that! Am I surviving? Yes! Is that what defines me? Hell, no.
I got sick, I got better, I moved on.
If it happens again, I hope I'll do it again. If I don't get better, I'll deal with it then.
I don't lose sleep because some crazy driver might take me out tomorrow. I won't let cancer take over my life, either.
How 'bout we (the people who have had that most scary of diagnoses) make that our model?
Having said all that, I also want to say that you are a hero the way you are going through this and talking about it. I would not expect you to have put it behind you yet. Well, it's not behind you yet - you've still got healing and learning to do.
But I just want you to know that you DO NOT have to give the rest of your life to this thing! You just don't. One of these days, it will move out of the spotlight & let you get on with things.
Your list trumps mine any day.
Can you use Ensure drinks to help keep up your blood sugar/mood in times when you don't feel like eating or it's so hard? My apologies if this has already been addressed. I have correlated lots of valleys with really needing to get some calories in there.
As far as what to say to people about the piece of plastic in your head....how about, "My life depended on it." ? Because it's true. Anybody would do the same in that situation. Before it happened to you, you might have said Oh HELL no. I think now you feel defensive about having a perceived defect, but in time you'll have your survivor mojo going strong. I'm glad you did what you had to do to stay here with us all. This party just wouldn't be as fun without you!
Also, Wayne is so funny I wanted to Schnozz Diet Coke all over the place.
Korean Day Spa, no one speaks English anyhow, so pointing and gesturing is the best method of communicating. Really.
For the contest:
"I'm in a clinical trial of a new sex toy."
"I'm still getting used to these bionic vocal cords. Wanna hear my high A?"
"It was a run-in with a Komodo dragon. I don't want to talk about it."
"I got attacked by the one zombie that flunked anatomy..."
I second the commenters who said that each relationship - friend or otherwise - is an individual case. I have MS. I tell new folks in my life when it seems or becomes necessary, and many still don't know. You'll know when and what you need to disclose.
I also second the MedicAlert bracelet, because as a former EMT I think the obTurator could be a factor should you ever need some kind of respiratory support. I have a whole wardrobe of bracelets, a shoe tag, a dogtag, a wallet card and a car sticker. I've even made some custom beaded bracelets to go with special outfits - be happy to make you some!
I like the Annie Lennox explanation, besides which I think you look great with short hair. And the offer of hats/scarves/turbans etc stands if you want/need them - just email me.
I won't compare MS to can-sah in terms of seriou usness, but I do know what you mean about it taking over your life and constantly, threateningly hovering. I dread each 6mo MRI and pop champagne when they show no new lesions, and I have about wheelchairs and ventilators. But as you get distance from it - and time is really the only way to do that - it shrinks and recedes somehow, and life goes on. It does get better.
It's ironic as hell for me to be counseling patience, as I'me pathologically IMpatient, but do give yourself time. I've learned (the hard way) that your body's gonna do things its own way, in its own time, and you're just along for the ride.
Oh, and I hear you with the speech, swallowing, regurgitation and drooling too - spent a lot of the summer I/O the hospital with MS swallowing problems. I still drool at random, choke on the strangest things, and avoid eating in front of anyone except my husband. I often sound the child of Foster Brooks and a foghorn. All I can say is, ice cream.
Virtual hugs & kitty snorgles,
Memu ne
Jo,
The day I read your blog post that you had cancer I cried, big sobbing kind of crying. I don't even know you, but can-suh is scary. I've had open heart surgery three times and I would be more scared of cancer....seriously. I think all of your readers have given you all of the best advice.
I specifically agree with the medic alert bracelet. Imagine finding someone's mouth like yours as a nurse, when you didn't know what happened to them, eh?
And, as for what is in store, what life with an obturator will be like, ask your DDS dude if there are others like you that he can put you in contact with. There has to be others, or he wouldn't know how to make an obturator, right? Even if it is just one person instead of a support group, that one person who has already walked in the shoes you currently fill, they can give you tips on how to get through this. Sometimes just one other person who knows what you are going through is all one needs in order to not feel alone.
I'm sending positive energy your way. Consider yourself hugged.
♥
S
I wouldn't worry about the far future. I mean, how many cancer survivors do you know? I know lots and lots of them--once you make it out of your 30s, plenty of people have their number come up. It's honestly never occurred to me to pass judgement on or be dimissive of someone because they had cancer. (Now spelling it "obdurator?" That's another matter altogether!)
You just had your cancer in kind of a weird place, that's all. Anyone who runs away screaming because of it (or because your voice sounds a little strange) is not worth a bucket of warm spit anyway. Seriously, what kind of adult would respond that way? Unless you're cruising the local high schools for dates, I really don't think it's going to be an issue.
I'll echo the "don't borrow trouble" sentiment. To be brutally honest, there's not a fucking thing you can do to keep the cancer from coming back other than what you're doing now. It sounds like you've already got your worst-case-scenario paperwork in place, and you are as prepared as you can be for whatever comes. Take pride in that--most people just hide under a rock and hope the bad things will never happen to them.
Remember the way Igor in Young Frankenstein handled it? Just stare at your querent with concern. Maintain eye contact. Ask "*What* plastic thing?" Wait.
You are one gracious lady. So I forgive you for inducing a 3 day long stuck in my head rendition of Jim Croce's immortal song, ObTurator - hey you're a neuro nurse! Why the hell does our brain do that to us? How does it pick which song to torture us with?
Elyse
I got nothing on most of the things on your list, but what about a small-ish Magna Doodle to carry around when you need to get a point across and the words just aren't coming verbally? Answers to questions, requests, etc.
"I asked a nosy question and then *this* happened!"
"More napkins, please."
"Turns out hedgehogs aren't edible."
Jo - you can PISS and MOAN all you want as you have been handed a huge pile of poop-ola in the form of a weird type of can-suh.
When I was going through a tough time, a friend gave me a bracelet engraved with "Nothing is worth more than this day." While I certainly haven't been in your situation, this quote has been very helpful to me so maybe it will help you.
Next time someone looks into your mouth at the big hole in your head - think of my surgeon looking at my privates (had a partial vulvectomy due to cancer) stating "I'm sorry you are so asymetrical." Maybe that will make you laugh - it does me! Sheesh....as if I care what my vulva looks like!
For the contest: This is how I plug in my flash drive.
(((hugs)))
I second most everything said above...and remember that obviously you have a LOT of friends and cyber-friends who care very much about you. I hope that gives you some comfort. You WILL get thru this...hang in there!
And if you need distraction...my 16 year-old daughter was diagnosed with viral meningio-encephalitis today...I'm a nurse but my classroom days were long ago, so if you're up to it, how about a refresher on that? Her illness started last Sat. when she came home with a sore throat, headache, and fever that quickly rose to 102.2.
Sunday the fever was down, and Monday she still had the sore throat and headache. Our family doc did a strep test and mono spot and bloodwork and diagnosed it as viral.
Last night she woke up sobbing w/the headache and the doc sent us to the ER for a CAT Scan and Lumbar Puncture, which showed 22 white cells and a few red cells. She's at home now with anti-nausea and pain pills (why don't we call them "anti-pain" pills?).
Questions: what did the illness Sat. have to do with her developing this? Why did it happen? How contagious is it (the dr. said not very)? How long will she feel so rotten? And feel free to add any cool stories you have about patients with this or related illnesses (but not too scary if they're teenage girls, please!)
Thanks in advance if you're up to it!
For the contest: "Um, I was seeing this guy with a Prince Albert" pause "and well, my uvula kinda got stuck in it"
"Did you know I can stick a flashlight in my mouth and beams of light come out my nose?"
"I was arguing with an angry patient and he threatened to rip my tonsils out."
((( Jo )))
Jo, you totally rock. All kinds of warm thoughts your way. For the contest, something about dining at a sushi place that was dark, and mistaking the chunk of wasabi for a piece of hard candy--who knew it could blow the whole top of one's mouth off???
Anon, about your daughter:
Questions: what did the illness Sat. have to do with her developing this? Why did it happen? How contagious is it (the dr. said not very)? How long will she feel so rotten? And feel free to add any cool stories you have about patients with this or related illnesses (but not too scary if they're teenage girls, please!)
The illness on Saturday probably led to the viral meningitis, that can happen. It's not very contagious, just make sure you wash your hands and don't drink her spinal fluid. She might feel rotten for a week or two; it really depends on the patient.
As for feeling rotten, a dark, cool room without any stimulation (no tv, phone, iPod, nothing) will help a lot. Dark, quiet, and boring is what you want for this.
And as for why it happened, sometimes it just *does*. There might've been a tiny, microscopic break in the lining of her sinuses that allowed one virus to invade her spinal fluid. Luckily, viral meningitis is **nowhere** near as severe or contagious as bacterial meningitis, and she'll be feeling back to normal really soon.
Give her a cold washcloth and my sympathies. Poor baby!
LOVE the Prince Albert one!!!! Yes, I'm a chaplain. Yes, I know what a Prince Albert is. No, I don't want to see one...
Jo,
This made me reevaluate my own list and eliminate all the whiny items. Now its a fairly short list--thank you for helping me remember that. I'm amazed at your grace & strength.
Now for the contest: "I'll never try to save time by using my electric toothbursh in the shower again.."
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