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.

37 comments:

SRR said...

When your body is beat up and tired, absolutely everything looks worse. Especially if you are having to take all those pain meds. I'm sorry you are at one of the low spots. I guess the only bright side is that it is completely predictable that you would have these low spots, and that when your body isn't using all it's resources to heal, things won't be quite so bad. Really they won't.

Have you considered getting some massages. I would imagine with the different ways of swallowing, etc., that your muscles are getting tense, and used in different ways. It might be something that would not only feel good, but would be good for healing. If you find somebody who does lymphatic drainage massage, it might help even more.

Best wishes!!

Earl said...

"...or paying somebody to do it for me when I get too old to see it."

I like that you used this phrase. Sounds like a strong determined person.

Crazed Nitwit said...

You've done an amazing job of being upbeat. I was expecting a little bit of this. Nurses make the worst patients. Of course you want to heal faster. Of course you want the pain to end. You want to get back to a normal life.

It will get better. Let yourself have a time of grief and anger. Prayers and many people are supporting you, rest in us.

My RX is to go watch "Singing in The Rain" on DVD. Excellent dialogue, incredible dancing, and lots of fun pretend lives. Or classic Bugs Bunny or Monty Python and the Holy Grail.

Now tell me, who invented that word defect? Dumbass.

Celeste said...

All of this is really normal for anybody with cancer who has to learn to live with a prosthetic. You're at a disadvantage because you can't sit in therapy and TALK about it to somebody right at the moment it's hurting you.

Even if it's normal, it sucks. It has to. Your life has done a 180 since you felt that lump weeks ago. You don't have work supports, you can't go be with friends, you can't just set this goddamn thing DOWN and take a break from the heaviness of it.

I think it's as natural to wonder if you'll ever date again because of this, as it would be as a coupled person to wonder if you're going to get dumped because of this. Am I saying how cool that you can't get dumped right now? No. I'm just saying, the grass isn't always greener.

You don't always have to content yourself that this was low grade. It cost you an amputation--it's a big fuckin deal and there's nothing low grade about your new normal.

I wish your work had something non-physical you could do part time to ease out of the house and back in to normal life. Is there any possibility of that?

Thinking of you on this hard night.
((((hugs))))

SMT said...

I can't even imagine how hard dealing with this cancer diagnosis is...I wish I had something to say that would help but I am sorry that you're having to face all these unknowns, they are the worst.

LaLa said...

I'm so sorry you're feeling scared and down. It's expected, but you're always so amazingly witty and fun to read, it makes it easy to forget sometimes that you're a real live human being going through a real live shitty time.

Hang in there. You're awesome and you'll get through all of this.

Ewa said...

You have no idea what a hero you are to me, even when you are down, depressed and scared. My little brush with cancer scared the shit load out of me and here you are not only fighting but sharing your difficult journey with us. I wish I had something smart to say to cheer you up, or lived close enough to drop by for a potluck of lukewarm pure burger or something.
Be strong and do feel my warmest thoughts I am sending to you.

Engranon said...

Cancer sucks, waiting sucks, being patient for the healing sucks. Let it out. We are all still here for you and can take whatever you need to dish. I could send pictures of rats if you want.

Andrea said...

Remember you have all of our support.

My college roommate (you two have similar personalities) used to do this thing whenever she felt like you're feeling now: She'd go to a coffee shop or Walmart or wherever and sit and watch people and think "At Least I'm Not Them". I've tried it, and it works. I might be in the throes of a pity party, but as soon as I analyze the general public and imagine myself in their shoes, I instantly feel better.

At least you're not them.

Anonymous said...

How incredibly well you write--clear, precise, and coherent. And you are doing this despite whatever blurring the pain meds are doing to you. You amaze me.
Besides the massage idea--maybe an electric heating pad might help ease a bit of the pain a bit of the time?
Anne

bdaiss said...

What's this? The incredible Jo is human? *gasp!* : ) It's called the stages of grief. I'm sure you've heard of it? Revel in it. And know it means you're healing and coping.

Also know we're here for you. Even on the not-so-sunny-side of life. I second the Singing in the Rain prescription and prescribe add Guys and Dolls and Anchors Away for further treatment.

Penny said...

What everyone, and especially what bdaiss, said.

That, and I wish I had a magic time machine to speed this particular segment the righteous hell UP.

(((((Jo))))))

Kimberly said...

I can only imagine how hard this is. Sending warm thoughts and virtual hugs.

Jenn said...

I wish to add Some Like It Hot to the prescription of Singing in the Rain. I don't know exactly how you feel, but I remember being so sick and hungry that looking at food hurt because I knew it wasn't going to taste good. Just remember it will get better and you are ALLOWED and EXPECTED to be grumpy, upset, and angry at this. So curl up on the couch with your furry animals, watch movies, and know the day may suck overall but in that moment you created, it didn't.

Lurkette said...

Oh, Jo honey, I'm so sorry. This bit had to come, and it will come again. After a while you develop the way that works for you to deal with it.

I've said it before and I'll say it again - this is your cancer, your body, your recovery, the whole rest of your life. Whatever you feel, whenever you feel it is the right thing to feel at the right time.

As nurses we are strong, independent doers. Solution-oriented. Assess the situation, make a plan, implement, evaluate. Repeat as necessary. But with cancer, here we are - helpless in the face of something huge and outside our control.

Oh, it's not just the big existential questions (though it's them too). For me, it was the questions of daily existence, the ones you talk about in this post.

We cannot force our bodies to heal faster. We cannot control forces of nature like the tumor board.

A huge, life-changing event has dropped on your shoulders out of the clear blue sky and we here in Blogland are privileged to walk this path with you. You have my e-mail, sugar. Feel free to use it.

It's okay to cry, to howl at the moon, to watch cartoons, to spend the whole day in bed with a teddy bear, to laugh and make jokes, to sit quietly and think great thoughts or small ones. Anything you need to do is the right thing to do.

I'm so sorry you have had to join this exclusive club of ours. Let me know if I can help at all.

Meanwhile, lots of prayer, gentle hugs, and positive energy coming to you from Jerusalem.

Kirstin said...

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

I know. And it sucks. And it's okay to let yourself feel it, and to write about it.

Anonymous said...

http://www.youtube.com/watch?v=G_Z3lmidmrY

Even when suffering, you still RAWK!

TheSchaft said...

Go for the massage. It will help I'll bet.

As others have said, this is a part of the healing and grieving process, and we thank you for sharing it with us - it provides an insight into what folks go through when something like this occurs, and reminds us that no matter how many people we have around, we are still all alone at 3AM when the fear strikes.

I wish the Doctor had called to tell you the news, whatever it is (and I gotta believe that it will be good, given what he said.)

You have more folks pulling for you than you know, and we all wish there was more that we could do. At the same time, we know from your posts that you will come out of this. Until then, remember that this is temporary - the pain will go away, you will be able to talk again, and you will find someone who doesn't care that you are missing some parts.

(While unintended, the line: "It still sucks to be missing part of your mouth and throat" struck me as funny.)

Anonymous said...

You are not alone ..
I watch The Bucket List so I can cry & laugh till I cry again.
Sometimes being single means you don't have to worry about someone else esp during trying times. Even though I have my other half in my bigC journey, I feel very alone during sleepness hour @3am or 4am & my pillow is my teary buddy.

But all this hurting will pass. Give yourself time to heal proper.. don't be in hurry to get back to work. People with cancer feels as if their time on earth is shortened.. its NOT its how you make the best of it.. God Bless

Geosomin said...

I thik you're very wise to type out how you feel and try and deal with it, even if it's overwhelming you. It's important.
Sending you strength through the atmosphere...

messymimi said...

Some hurting no one can know, even if they have been through similar, because they haven't been through exactly what you have been through.

It's okay to share it.

Praying you need no radiation.

Just My 2¢ said...

Hey, kiddo!
Regarding cancer and pillow talk...
That might interfere with casual, shallow relationships, but it better not put off the mature, quality gentleman that you deserve.

I have sleep apnea. I put on my Darth Vader mask every night. My wife doesn't care. If I were single, a lady-friend had better not care, either. If she did, she wouldn't be good enough for me.

Fordo said...

Oh, Jo, I am so sorry you are going through this. I wish I could help. I wish I could give hugs and bring you classic movies and funny games. You are one of my daily reads. Why? You sound like a fabulous person. You are going through something incredibly difficult and yet you are meeting it with strength, humor, and attitude. Please feel free to whine any time. I hope it helps you and I hope if I'm ever in your position I meet the challenges 1/2 so well as you do.

Hang in there. Things will get better. If you can possibly do some gentle exercise it might help boost your mood and your immune system. Massage also might help.

Take care!

me said...

Ditto all that Lurkette wrote ~

We nurses don't make 'good' patients, do we?

Let yourself feel the love and good vibes we're all sending to you ~

Above all ~ be gentle with yourself ~~~

Mara said...

Jo honey,

I agree, it sucks big donkey balls. I had surgery 3 months ago for an exploded disc which has led to major neuro deficits, so I have some small understanding of how you feel. I agree with everyone else to get a massage, or at least a pedicure or manicure - having someone touch you simply to make you feel better is just what you need. Text your friends and tell them to force you out of the house for at least 1 hour each day to do something "normal". Go in to work for 30 minutes just to get the smell and sense of purpose. And remember that you have tons of people who think about you each day - I check in to read your blog every day, even though I'm doing an incredibly stressful internship/residency right now, simply because I care about how you're doing.
Things will get better

Penny said...

I have a crush on Lurkette. I just wanted to say that.

Rebekah said...

NOTHING I can say can be better than all of the above...I am just still in awe that you are handling this in such an honest way. And I am continuing to send hugs & (fast)healing energy vibes. {{{Yo}}}

Memune said...

Hey, you're allowed. Nobody can be tough and strong and positive and upbeat and a "warrior" ALL the damn time. Where better to vent/whine/cry/pout/holler/scream and cuss?

It doesn't help all that much, but when I'm where you are, it helps a little bit to remember that part of the crappiness is due to the meds, and that things will get incrementally better as time passes.

But yeah, it bites the big moose wang.

I substitute "The Producers," "Black Books" and "Weekend at Bernie's" for "Singin' in the Rain." I also read Molly Ivins.

WV is "oxtene." Maybe that's what it sucks.

Special Sauce said...

It sucks hugely that you're going through this, and it sucks more that it's not the first, nor the last time you're going to probably feel like warmed-over-arse. You will kick cancer's scraggly ass, but you don't have to smile every second while you do it.

Massages are great, pain-relief and stress relief rolled into one delicious smelling package.

Anonymous said...

Pain and fear are so incredibly exhausting. I'm sorry you are so uncomfortable and frustrated. As always, I appreciate your honesty.

Have you been able to use your British-voiced programmed "I'll kick you in the balls" machine?

Dr. Alice said...

I'm not surprised you feel like this. What you're going through is a slog. It's a goddam slog and there's nothing to be done about it, but you will live through it and it will get better.

Healing takes as long as it takes. Easy for me to say, not so easy for you to have to wait it out... but I bet you're healing faster than you think you are, thanks to your awesome hygeine skills and overall good health. (Plus, you're eating black beans and not ice cream all the time.)

And I firmly believe you WILL meet somebody who won't care about Prosthetic Plastic Pal. I don't know where or when, but I think it will happen for you. Lots of good vibes coming your way.

Anonymous said...

I think the fact that you are able to feel the pain mentally and physically and just ride with it speaks to your strength. I have no doubt that you can get through it. Come whine and bitch anytime. We can take it.
canoehead

danielle said...

Hugs hugs and more hugs.

Anonymous said...

Have you named your ObTurator? Well whatever his/her name turns out to be they will function as a sure-fire Bozo-Filter in the Man Department so that likely will turn out to be a net plus.

Isn't it perfectly normal for some regression to occur when your mind is reacting to an assault? It might help if you allow your self-talk to be addressed to a Jo who is younger and more vulnerable and just really wishes there was someone to soothe her and take all this shite away for even a few minutes. It's OKAY to feel that way! Hell, grab a pillow and wail into it until you either a)piss off your ObTurator or b)scare your pets. I would.

As mentioned, a good schmaltzy musical is a great mood lifter! I happened to catch "GIGI" while recovering from some nasty and really enjoyed Maurice Chevalier despite the creepy pedophilic undertones in the story.
Elyse

birdergirl said...

Everyone has pretty much said what I wanted to say. I am sorry for what you are going through. It fuckin sucks like a vacuum. Hang in there, Jo.

terri c said...

I wish I'd seen this the day you posted it... Am thinking of you, I know the bad days will be there, and that's natural, there's considerable suckitude involved in all of this. Know you have folks pulling for you; and you will get through this--but there's no law ANYWHERE that says you have to like it.

inkgrrl said...

What Everybody Else Already Said.

Plus, you're classier and more eloquent than I am. I got all emo on Twitter the other night about having to live like this for the next 40-50 years.

Don't discount the post-op mindfuck factors I think you've blogged about in a later post... depression, etc., is part of the healing process. Like when the nurse who's removing your IV uses the "wiggle it until all the tape detaches, never mind how big a hole gets torn in the patient's arm" technique, or like getting a catheter pulled out while you're awake, but slower. Or something else that is not fun but means that you're on to bigger and better things.

Hugs and more hugs.