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.



Silliyak said...

Can't go wrong with Blazing Saddles. I would also recommend The Big Lebowski. I was thinking you could give your obturators names, Dave, Janice or whatever.

messymimi said...

Blazing Saddles beats almost anything else, hands down.

Enjoy the quiche.

TheSchaft said...

Your scars won't be visible unless you laugh, or post photos, so there is that.

When I had a kidney stone taken out the old school way, I had serious "body-image-fuckup" concerns - I have a nasty scar that goes around 1/3 of my body, plus the drain hole scars. No longer the sexy stud image I thought I had.

Let the healing happen - both the physical and mental. You have found out that you are not (a) invincible or (b) immortal. These are good things to learn, but hard lessons.

Hold these close, and use them when you go back to work.

Libby said...

God bless you, Jo! You are strong, and beautiful...thank you for sharing this journey.

clairesmum said...

Knowing this is all part of the process of healing and adapting to change does not make it any easier to actually experience all of this, does it?
I know money is tight and there are advantages to going back to work (socialization, distraction, return to routine, etc) but think about delaying a bit, so you have space to keep healing....your workplace doesnt sound like a place where you can work at anything less than a flat out pace - just an observation, for what it's worth. if it's not worth much, pay no attention.
thanks for sharing so much of this experience with us - i feel like i am a better nurse for knowing about this, and that perhaps when my turn comes for a life challenge such as this, that I might be a bit more prepared.

Anonymous said...

Dear Girl,
I cry nearly every day and I don't have an extra hole in my mouth, the pain of surgery, and the prospect of what still remains to be done. We have sensitive personalities. My kids aren't going to college for another 2 years but I act as though they may as well be gone now. WHY on earth wouldn't you cry? Y, y? You are being sexist to yourself in expecting a saintly response to a hellish situation. Would it be possible to import the occasional friend or relative for a sleep over so you can wake up to someone to distract you. And Mr. Obie (my nickname for it) is no worse than a colostomy bag. You must buy some pretty sponges or whatever and some lovely fabric to cover the obie supplies, just to see if that helps. People need to bring you fresh flowers at least weekly for the obie 'shrine" as well as for your bedside table. infinite love, Rennie

Anonymous said...

Haven't read through the archives of your blog lately except to show an LDS friend your lovely 2005 post-Katrina entry about them so don't know who Ginny is-- but the reference made me smile as my mom passed away in July and there was a lady there at the hospital- didn't get her exact title -but sort of a chaplain-nurse-liaison-support person who was so over-zealous she would literally come by and yank me out of my chair for a hug as I sat by Mom. I still shudder at the memory of her blazer as it rushed toward me on yet another trip toward her ample buzooms for a supportive clutch. At least I now know they still sell Jean Naté! I know she meant well-but I still began to hide from her before the whole thing was over.
--- now that your brought it up. . .I am having a hard time visualizing the anatomy between the palate the sinuses and noses and brains and stuff. Again- you are way cool for recognizing there is a curiosity factor and not calling us a bunch of voyeuristic ninnies. Jo = an A+++ human. Thank you. Elyse

Celeste said...

Jo, just have faith that this is going to work out, and hold on to it. If you need to cry, cry. It's part of learning to live with a big loss.

I'm thinking of you and hoping tomorrow will be even a little bit easier than today.

bobbie said...

'Blazing Saddles' should cure just about any blue whim-whams you're having...

"Pardon me while I whip this out..."

Hugs ~~~

PS ~ Oh, the comments I COULD make based on that one line...

Allison said...

Good choice - farting around the campfire beats the Obturator any day.

Middle-aged Diva (Carol) said...

This really touched me, Jo. I was single for a very long time. Being alone has its pluses but that feeling of being alone and sick --well, I get it.

Your extended community online is here for you. Not in person, unfortunately, but holding your hand, virtually. Laughing with you and yes, crying, too.

Sending warm hugs.

Anonymous said...

Darling Jo, I really understand you wanting to go back to work, but next Monday is really pushing it. However, as a nurse who had surgery and tried to go back full time before my body was ready, I have a suggestion. Request half time for a week or two. Request desk time while you are on half time. Hey, you have suffered a trememdous insult to your body and you psyche, and you have to walk before you can run. It will relieve your coworkers knowing someone with a grain of sense is on the desk, triaging properly, ordering up the right shit, all that. (Reminds me of the time I ordered .5 % Lidocaine and the pharmacy was out, so sent me 2 0.25% bottles, rocket scientists down there, each and every one of them.) Anyway, in order to get up to speed, please give yourself all the chances you can afford. In most states you can work half time and collect the rest in half time disability. Talk to you manager and to HR and just do this. You will thank me. And you don't even know me.

Love, Another Nurse

Penny Mitchell said...

I am sitting next to Another Nurse holding a sign with an arrow on it which reads, "IN THE NAME OF ALL THAT IS HOLY, LISTEN TO THIS PERSON."

Way better to ease back into it too slowly and be left feeling bored and restless than to blast yourself back into it too quickly and be left feeling decimated and losing ground on your healing. Err on the side of caution. That's not "wimpy". That's SMART.

And...Elyse said "ninny"! :-D

Anonymous said...

You're doing a magnificent job. If it takes you a year or more to get to "good body image", that's okay. If you feel no improvement, I don't want you to delay getting help because you assume feeling this way is part and parcel of cancer recovery. I thought about it before I used the term "self-loathing", wanting to respect you, but also not wanting to see you in anguish because you assumed the trauma was part and parcel of recovery. The memory loss alone shows how traumatic this was; I don't think you'd say it's an insight to notice memory loss if that happened to all patients.

I want to suggest a book to you. The reason I didn't recommend it when you were asking questions about dating and sex earlier is that the anguish was the greater concern. The book is called Resurrecting Sex: Solving Sexual Problems and Revolutionizing Your Relationship, by Dr. David Schnarch, a psychologist. One of the things that's worrying you is feeling like you can't have a relationship in the future. The therapist has stories about people who've had extremely serious problems. I'M NOT SAYING YOUR PROBLEM IS EQUALLY SERIOUS. These include physical problems, like a patient who had Crohn's and had an ostomy. These also include mental health issues, like a woman who had experienced childhood sexual abuse. It does give advice, but it asks the person having the illness or injury to have courage in addressing their sexual problems.

His other books are good. Start with Resurrecting Sex. You've talked about the isolation of having this rare cancer. None of the people in the book had a rare oral cancer, but they did know hopelessness. This is the first chapter of Passionate Marriage; there's no free chapter of Resurrecting Sex, unfortunately. It's graphic.

Jo said...

Anon at 1:31 pm, could you please email me at johannebertha at gmail etc? Thanks.

Anonymous said...

Post or don't post this, as you like, Nurse Jo.

I prefer to remain anonymous, if you don't mind, but I'm rooting for you.

I may be anonymous, but the prayers I'm sending up to the Lord for your good health are sincere.

I look forward to hearing about that broccoli-cheddar-broth aspic....I think.

But I beg you, don't mention tuna and beets together again.


Jo said...

Anonymous-remaining anon...

I completely understand. I just wanted to thank you (so I guess I will here) for your insight. Every once in a while I come across a comment that knocks me out of my chair and out of my old ways of thinking. The comments you've posted, especially regarding self-loathing and anguish and such, were so dead-on it was as though you'd gotten into my head.

And because of that, I've begun to make progress and have hope.

I don't know, of course, how you got your insight. I hope the process didn't suck. Thank you, though, for turning it on my situation, and for clarifying things that were too jumbled in my own head to recognize.

Anonymous said...

Your understanding and appreciation means so much. I won't do what women habitually do, which is to minimize when they receive a very nice thanks. That was very special!

If it seemed like I was able to see into your mind, you had a lot to do with that. Where did I get my insights? From you, for the most part. If you hadn't had the courage, huge courage, to talk about how you were really feeling, I wouldn't have had anything to listen to. What I tried to do was bring together what you had said, so that you could hear what had happened to you, in its totality, not as bad experiences, as you said, jumbled up. With understanding of what had happened, I hoped you would give yourself kindness. This concept of telling someone their experience, in its totality, isn't something I came up with. Had you not been so courageous, I would have had nothing to listen to.

Your courage knocks me off my chair!

Thank you, that meant so much!