Monday, August 29, 2011

Two Stupid Things in two days: a new record?

As I was leaving the doctor's office after my annual how-you-doin' checkup, he said, as a sort of by-the-by, "You've gained six pounds in the last year. You'll need to watch that."

This after a long discussion of what sort of cancer I'd had and how I'd recovered and what my further treatment would be like, if I had to have any. This after he'd asked how the psychosocial aspects of recovery had been, by querying "How's your social life*?" in his Muppety voice.

I turned around in the hallway after the weight warning and looked at him levelly. "I've been busy" I said, and walked out.

Because, really? The last thing on my mind since just about eleven months ago has been Weight Fucking Watchers and not eating too many calories.

The first Stupid Thing had come the day before, so maybe I was a little over-reactive.

A woman I work with very occasionally--maybe twice in three years--asked why I'd cut my hair. Before I could respond with something neutral and funny, another nurse said, grimly, "She had cancer and was afraid she'd lose her hair to radiation." Leaving aside whether or not it's quite sporting to scoop somebody on something like that, things got a bit uncomfortable.

Nice Lady I Barely Know had a lot of questions. I don't mind answering questions about what happened to me; very few people, after all, even think that head-and-neck cancer is A Thing, let alone that you can lose part of your palate to it. I answered as best I could, and then she said this:

"Well, at least you don't have anything to worry about any more!"

Nice Lady I Barely Know put her foot straight fucking into it with that comment. I *know* it was meant to be reassuring and optomistic, and I treated it that way, but really? I have more to worry about now than I know what to do with.

I have, for starters, a very much increased risk of developing another, different sort of oral or oropharyngeal cancer. Call it two to three times the risk of your average person: my mucus membranes have shown that they'll react badly to HPV infection, and that reaction won't go away unless my DNA gets reworked in the manner of a Time Lord's.

I also have, not to put too fine a point on it, a couple of surgical sites that will never heal any more than they've already done. That means that inhaling my food, wearing a big plastic or plastic-and-metal thing, and having to explain shit to people will never go away. I can't emphasize how much that's affected things up to this point: I wear a MedicAlert bracelet, I don't go out to eat as much (because I can never tell when something might decide to exit my schnozz rather than head toward my gut), I have to tell *every* medical person I deal with about the prosthetic. And then I have to explain. Again.

Which brings us to the Social Life aspect of the whole deal. I hadn't realized, until I'd talked to other young and young-ish cancer survivors, how much that can factor in to starting--or ending--a relationship. I've been on a couple of dates with a new guy, and now I wonder, every time he doesn't email or call, if he's flipped out either by my lack of anatomy or by the idea that he might be buying into something that could end Very Badly Indeed. I used to worry about my belly or my cellulite or that huge zit on my chin; now I worry about the fact that I have this thing in my past and this plastic thing in my present and future.

And, finally, I have something that normal people don't: An every-six-months reminder of what pure gutwrenching fear is like.

I have to get scanned in November. I'm dreading that, almost as much as I'm dreading the dentist visit I have in September, a year to the freaking *day* that Amanda the Hygienist found Lt. Lumpy. I'm dreading the chest CT I have to have next year, to make sure that the tumor didn't seed into my lungs. Every six months for the next couple of years I get to go back to the CT center, drink the barium, take the Valium, wobble out of the room after the scan, and go on to the MRI.

These things are just part of the deal, I guess. They don't make me any more special or tragic or brave or stalwart than any other person who had rogue cells cut out of her body. I actually had it easy by comparison to my pals like Lara and Nikki.

But. When my tongue, out of habit, traces the curve where Dr. Crane cut out my palate, or when I have to run for my prosthetic when the phone rings, or when somebody acts relieved because I only took a few days off and wasn't out for some health crisis, I remember.

I used to have a favorite dress. It was a double-layered thing from Gudrun Sjoden, a Scandanavian store, and it had tiny lines of ornate embroidery around the cuffs and hem and neckline. It's the dress I wore when I went to the dentist last year. It's still hanging in my closet. I haven't had the balls to put it on again. Maybe I will this year, when I go see Amanda.

It would be the first step in not worrying so much.

*"Social Life" meaning "sex life" to my doctor. Which, to give him props, was the first time I'd been asked about it by any medical perp involved in my care. But still: DO NOT WANT to discuss that with Dr. Muppet.


Wayne Conrad said...

This post, and those before it, have utterly changed how I view "Cansuh" (did I say it right?). I used to think that it was something you got, and then cured or did not cure. I had no idea that a "cure" didn't eliminate the worry, or necessarily even the threat; nor did I understand the sweeping effects of "cure."

If there's any good out of this, maybe it's the bit of education you've given numskulls like me. It doesn't seem like a fair trade, but thank you just the same.

messymimi said...

Never, ever claim a person now has "nothing to worry about," no matter what they have come through or overcome. We all have our burdens to bear, and need to remember the most together looking people are sometimes the worst off in that respect.

Praying all is well at your coming checkups.

RehabRN said...


Keep on keepin' tends to piss people off.

You will make it, so take every minute you get. I'm tellin' my favorite nuns down the street to pray for you.

And if they can get the Pope good weather, darn it, they ought to get you something!

Penny Mitchell said...

I got nothing to add. Well, hugs. I got hugs.

painting with fire said...

Ugh - it's amazing how insensitive people - even people who ought to know better - can be. Wish I could reach through cyberspace and smack them.

My mother's reaction to clean scans or bloodwork post breast cancer was that it was the only time she'd shop for herself. She'd say wryly that she figured she'd get at least 3 months wear out of whatever she bought since that was the time-frame until the next test at first. Stressy way to live.

clairesmum said...

there's no accounting for stupid, is there? common sense, courtesy, and compassion are rare traits these days, it seems. i'm sorry these oafs had a stupid attack with you!
you keep on being Jo, you are a great fully alive person (or at least, you portray one on your blog!)
good thoughts ascending, and a big ear rub for Max.

Elyse said...

You really have such a seemingly endless supply of good will - not always patience or energy (who does?) but to always be thinking how you can translate your experiences into words that are a little bit story and (to me) a little bit lesson, though you are in no way preachy! Thank you so much for that.

Great exit line with Dr Muppett!

Anonymous said...

Hi Jo

Thanks, really, honestly.

The serious side of life hasn't got me yet, but I expect it will, given my family history:

And hey, I'm an RN too, general & psych. Yet knowledge and professional experience doesn't mean squat until it's personal.

Your literary yet heartfelt and seriously funny musings are simply quite inspiring: if I ever met you (quite unlikely) I wouldn't say so, though.

There'd be no need - a person is always more than the sum of their essentially private, yet life-confronting problems.

Thanks so much.



terri c said...

Yikes. As to the Stupid, it is not so much, as my neuro said sadly to me once, that they are SO STUPID, but that there are SO MANY OF THEM. As to the Cansuh, I wish it weren't so. And the world is better by a long shot with you in it and I hope that continues for a loooooong time.

Just My 2¢ said...

Amen Sister!

I have a bad family history and I had my own (pretty rare) sarcoma removed from my from my arm a month ago. Folks think that it "ain't no big thang" because I didn't need radiation or chemo. They tell me I have it all behind me.

My case makes a 4-generation unbroken chain, including my son... This was a relatively manageable intro to CANSUH, but it proves that my genetics are fragile. Somewhere out there is another tumor with my name on it, and I expect that one will eventually get me.

I hope things go will with this fella. You have a great brain, good sense of humor, and you look great in tight tee shirts. Ya got it in the bag!

Halie (Scrubs Editor) said...

You never cease to amaze me Jo. This post is so smart, funny and thought provoking. Thanks for sharing it with all of us! And I totally think you should brush off that dress and wear it again.

Rosanna said...

Jo, this Male Counterstrike Comment, (i.e., Below, between asterisked lines), is FROM my jazz-loving husband Jack (63) who----(in addition to thinking very highly of you, as an *excellent* Neurological Nurse)----is also very well-read; yet just a real "guy's guy," you know. Jack has a B.A. degree in Broadcast Journalism, plus an ABT, (i.e., "all but thesis"), M.A. degree in Speech Communication; and, for the past 29 years, he's worked in a large Department of Psychology at a major University............ (i.e., assisting Clinical Psychology Faculty and Psych Grad Students with their grant-funded Human Research Projects)............ as the Psychology Shop Services Electronics Technician.

Anyway, Jack's role/relationship WITH professors and grad students----(and you're certainly very familiar, *familially*, Jo, with academicians!!)----is much the same AS an R.N.'s role/relationship with physicians and interns is. (*Not* that I'm sayin' that the word "surgeon," Below, just MIGHT POSSIBLY BE INTERCHANGEABLE with the word "professor"............ and I didn't even tell Jack that yet, haha!!):

"Where to begin? Surgeons aren’t known for their tact, and your surgeon is no exception. Both of his remarks are deeply offensive; more importantly, they have nothing to do with the visit. A six-pound weight gain in nearly a year is trivial; many women gain that much in fluid during their period. The question about your “social life” is tasteless (and none of his business). Your oral surgeon would be better advised to confine his comments to the surgery."

So, very respectfully acknowledging your (male) Surgeon's O.R. finesse, this, (Above, between asterisked lines), is essentially a (male) *COUNTERSTRIKE Opinion*............ TO............ your Surgeon's hurtful comments, to you, this past Friday in his Office.

'N.O.-G.O.O.D.-R.E.A.S.O.N.-F.O.R.-I.T., (i.e., your Surgeon's hurtful comments)............ **P.E.R.I.O.D.**!!

The Nerdy Nurse said...

This post has made cancer more real to me. You've given me more perspective and an insight into a life that has been scared by it.

I am so sorry you've had to face it and continue to be burdened by the ramifications of it. But I thank you for sharing your story with us.

woolywoman said...

Always amazes me when random people I barely know feel like they get to ask me about my personal health condition. I just blink at them, and wonder.

Anonymous said...

Lord, have we got some things in common. A cancer patient and a nurse here. My scan is next week...the first one I've had going six months from the previous one. I'm pretty optimistic about it, but yeah, the psychological fear is there whether I want to adknowledge it or not. I talk about being a nurse and being a cancer patient sometimes on my blog, so if you ever get a chance, give my blog a look. I wish you a beautiful clear scan in November.