Monday, January 31, 2011

Bonus Post: the second most misunderstood post ever, plus what I'm thankful for...

Please note, emailers and posters, that I didn't mention word one about going low-carb in connection with bison meat. I buy red meat maybe three times a year, and this time I decided to try bison loaf rather than beef loaf. I'm more concerned about hormones and weird finishing-lot stuff than anything else. I've seen feedlots. They're not cute.

Also, emailers and posters, please note that I didn't say that Der Alter Jo's boyfriend was *my* boyfriend. To wit:

1. Der Alter Jo is a different person.

2. Her boyfriend, RatBoy ("Wait, Wait: Don't Tell Me" reference) does not eat beef.

3. My boyfriend doesn't eat beef either, but that's because


Y'all just take a pill. Please. I didn't bury the lead. Penny, put down the rice. Mom, don't panic. Thank you.

Also, I am very thankful to have the sort of friend in Der Alter Jo whom I can text as I'm watching Sherlock Holmes episodes and say, "Seeing Counsellor Troi in 'The Sixth Napoleon' is just weird" and have it make sense. I swear, if Alter Jo started following fashion blogs, we'd be the same damn person.

She gave me a Kindle, which was akin to giving Iggy Pop a fresh needle and a bottle of bleach. She sent me a box of Archie McPhee stuff to hand out to visitors while I was in bed hopped up on Dilaudid. But the most valuable thing D.A.J does, besides being a totally-trustworthy, kickass nurse? Is be as nerdy as I am.

Well, that and keep tea in her bag at work. That's good, too.

Cute Overload.

My pal Joey (SWIDT?) has just adopted a cute little fluffy white dog named Dexter. He's a Coton-de-Something, officially the officialest official dog of Madagascar that anybody has ever seen.

(Joey is like that. She gets invited to parties where Noam Chomsky just might be hanging out by the guacamole. Even her dog's breed is unintentionally fucking cool.)

Anyway, he's adorable, and I say this as somebody who does not like small dogs. Anything under 40 pounds is bait, unless it's a dachshund. But Dexter? Adorabubble. So much so that I have been compulsively checking Joey's Facebook page to see if there are more videos of him sleeping, or chewing on a toy, or playing in somebody's lap.

She asked if there were any apps for puppies. I, in a moment of genius, replied that there are two: SLEEP and PLAY. The trick, of course, is getting 'em to download at the right times.

Our own HN Mascot, Max, is also being terminally cute. While he was drinking from his big huge water bowl today, Flashes (the stripey, smaller cat) decided to come up for a drink as well. Flashes has to do everything Max does.

That led to many licks from Max, as Flashes seems to have some sort of Tiny Flavr, and left Flashes sort of damp all over. Which means that they're now cuddled up on Max's bed so Flashes can stay warm.

It's all freaking cute all the time up in here.

Monday Remedy:

Sunday, January 30, 2011

Sunday night/Monday morning jam:

I'm going to be writing an article on dealing with difficult patients, and need categories I can slot various patient types into. Suggestions are welcome in the comments.

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

DAMN YOU ALTER JO. I'm letting the bison meatloaf rest overnight, in an attempt to get it all to come together, but damn you! Jo's boyfriend doesn't eat beef; he's unable to, considering that nobody in his family has done so for more than a thousand years. So they eat bison. And I've got two poundses of the stuff, Precious, sitting in the fridge and freezer, on her recommendation. If this doesn't turn out, I'm fingering you and RatBoy.

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

Somehow, without meaning to, I've gotten tasked with working out a diabetes education program for our patients with strokes. Considering that the majority of our stroke patients are poor and diabetic, this will be a challenge. The main problem is going to be writing up instructions in a fashion that people with only a fourth-grade education can understand, without it being condescending or oversimplified.

Nurse Ames will be helping, but still: the majority of the responsibility falls on me. Yikes.

How did this happen, again?

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

The NP for the stroke service introduced me to the new resident group as the local expert on drugs and STDs. Hi! I'll be your Big Ol' Ho today!

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

Is it unreasonable for me to want to hike the UK for my forty-second birthday? That's a year from now. I'm starting tomorrow, looking for people who can put me up.

Or maybe New Zealand. I've always wanted to go to a place where you could dig down into the beach sand and end up with a hot tub. There's something about visiting the youngest habitable spot on the planet, geologically speaking, that appeals to me, even if I don't have any history there.

Why can't Kiwiland be closer to The Old Country, so I wouldn't have to choose?

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

Not safe for work or Mom. Or maybe safe for Mom, because My Mom is pretty damn cool.

Oh. My. GOD. (fuckit!)

I want a Hello Kitty merkin. This might be why I'm having so much trouble on OKCupid.

Saturday, January 29, 2011

An encounter with Dr. Pleasant, resident physician:

Dr. P: "What's a blunt?"

Nurse Jo, without looking up from her charting: "A cigar that's been hollowed out and refilled with marijuana."

(a few minutes later)

Dr. P: "This patient has trich. What do we do for that?"

Nurse Jo, without looking up: "Two grams of Flagyl PO, given once."

(a few more minutes pass)

Dr. P: "Why have I been humming 'I Think We're Alone Now' all day? I hate Debbie Gibson!"

Nurse Jo, without looking up: "That's actually Tiffany."

Dr. P: "That is the most disturbing thing you've known all day."

Nurse Jo, your source for all drug, sexually-transmitted-infection, and bad 80's pop knowledge.

Tuesday, January 25, 2011

How Oliver Sacks saved my ass.

"Hallo, hallooo!" said The New Guy, as was his habit. "I'm an idiot!"

"That's funny," I said, "I always thought you were a moron. Guess that just proves you can't tell by looking."

"No, really!" persued New Guy. "That lady in seven? She's got name blindness. Name blindness!"


"And she's cortically blind!"


"And you knew all this before I came in here, didn't you?"

At this point, I felt some pity for The New Guy, even though he consistently addresses himself to my left breast. He's weird; he's not creepy. "Yeah, I kind of figured that out," I said, "but I didn't know the exact names for the problems."

Cortical blindness is an interesting critter. If you have a stroke in your occipital lobe--poor you--there's a chance you might end up cortically blind. If you have that condition, you can't see, but you don't *know* that you can't see. You "confabulate"--that is, you make up stories--in order to fill in the gaps that your now-not-working brain leaves in your visual field.

Strangely enough, cortical blindness can be accompanied by a couple of totally different conditions: blindsight (the ability of a "blind" person to follow movement or recognize facial expressions or avoid objects) or flashes of sight, in which the cortical blindness lifts for a moment or two in particular areas of the field of vision, allowing the person to recognize objects.

This person had all three, along with something called agnosia, or the inability to recognise objects or people. She could tell you what each thing did--for instance, if you put a pen in her hand, she'd hold it and say, "This is something that you use to write with", but "pen" was no longer in her brain.

Blindsight is comparatively easy to explain. Humans have more than one path for vision. If you see, for instance, a threatening face, it's processed through a part of your brain that has to do more with emotion than sight. Likewise, if you are cortically blind and told to run an obstacle course, the signals from your optic nerve--as weird as this sounds--are interpreted by parts of your brain after small, discrete areas of your brain that are dedicated to sensing edges and objects fire off.

Which explains why my sweet patient could follow a fork holding her breakfast eggs (yes, I'm sadistic) while still maintaining that she could see nothing. And why she could avoid the wall and manage to hit the door to the bathroom bang-on, every time.

Name-blindness is another part of the brain, and it's something I still don't fully understand. Interestingly, in this patient's case, it went along with face-blindness. She couldn't recognize her daughter and son-in-law until they spoke, and she couldn't recognize me unless she saw the stickers on my name badge.

That makes me wonder about New Guy. Maybe he's face-blind and can only recognize me by my nametag, which generally rests on my left breast. Maybe if I punched him really hard in the face it would rewire his occipital lobe. You know, a kind of therapeutic coup-contracoup injury.

Thank you, Oliver Sacks. Had I not started reading your work fifteen years ago, I would never have known how to test for agnosia, cortical blindness, or blindsight.

Well, that's nice to know.

I had my first mammogram (note to toy developers: if you ever come up with a My First Mammogram toy for little girls, I want a cut) last week and a resquish today. Those of us who are nulliparous and who have dense breasts often have to get resquished and sonographied, as our breast tissue is denser and contains more stuff that can mess up the X-rays.

Mammograms, I learned last week and today, do not have to hurt. The trick is to go somewhere that they do *only* mammography, so you're not working with a tech who also X-rays things like femurs and skulls. It's a tricky job, zapping tits with radiation--there's a lot of positioning and moving of tissue that I hadn't expected. It's interesting, but a rather strange sensation.

Anyway, the first mammogram showed wonky bits in both breasts. The second one, taken at slightly different angles, clarified that those bits were indeed wonky. Given that I had a clean PET in October, I wasn't particularly worried, but still.....when the tech came back and told me the radiologist would be doing a bilateral sono, I started getting nervous.

Dudes: THEY HEAT UP THE SONO GEL. No shit. It's actually warmer than skin temperature. I need to remember this for all the sonography we do in the unit.

Anyhow, the magnificence of my breasts has now been confirmed scientifically, and I am to return in a year to make sure that their quality is undiminished.

The best things about this clinic? Bathrobes. Real, cuddly, fleece bathrobes that are NOT pink, to put over the little gown-thingy they give you. One cup coffee/tea/hot chocolate makers around every corner. And, best of all, a SNACK BAR. If you want a little something to munch on while you're watching "Charmed" and waiting for the radiologist, you can have fruit or peanut butter crackers or maybe a little donut.

I am all about the snack bar from here on out. Every clinic worth its salt will have one when I'm Queen of the Universe.

Sunday, January 23, 2011

My brain is too full.

Update for those of you who found HN through Ebert's Tweet and who've been following the Tashi & Wash thing:

Tashi says her blog got sixteen thousand new visitors in 24 hours.

She thanked me for that. I don't know why. As I told her, I added the link for HN to the end of the email I sent Roger Ebert as a dithered-over afterthought. I thought maybe he might be interested in reading about somebody else's oral cancer; I had honestly forgotten that the top post was about Tashi and Wash. I was, in short, attention-whoring.

And so much good has come out of that. Even if Tashi still has to worry about money--and more on that in a second--she knows that there are *that many more people* who know about what Wash is going through. Raising consciousness like that cannot ever be a bad thing. I'm a firm believer in the idea that the more you tell a story, the more power you have to affect how it turns out.

This is an excellent example of how a) chance favors the prepared, or b) even grovelling ingrates like me occasionally get things right.

As for the money: That's a big deal, and it's not one I'm ashamed of talking up. Arizona's state indigent care program barely covers the necessities. They consider Wash ineligible for things like nausea meds and antidepressants, because what's it matter? he's just gonna die anyhow. That means that Tashi has to do things like buy drugs instead of pay car insurance--or, rather, with the grace of God, she *did* have to budget that way. Maybe now things will be a bit easier.

My dream for her and for Wash is that they have a couple or three months where they don't have to worry about the necessities, and maybe have money for a few small luxuries, like a dinner out. Wash worries about being a burden, and he worries because he can't make things easier for the woman he loves. I would like it if that worry could be removed.

And Roger Fucking Ebert, of all the kick-ass people, has made that more possible. Because of a simple, solitary re-Tweet he did of this blog, and a follow-up that he did of Tashi's blog independent of this one, it's possible. It's just barely possible.

I told Tashi that the only reason this has all happened is because she conveys so well what it's like to care for somebody who's living with a brain tumor. She writes beautifully, and it's raw and often painful to read, and it's amazing. If she'd been one of those folks who misplaces apostrophes, things would have not turned out like this.

The tl;dr of all of this is this: I don't want Wash to die. If he has to, I want him to have a peaceful, gracious, dignified death unmarred by worry. I want his death to be as loving and joy-filled as his life has been. And I want Tashi there with him, and not having to worry about fucking money. And I want her to see that, even if living without him feels like all the air's been stolen out of the world, people still care about her.

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

In other news, I would like to remind the readers of HN what they did this year:

They kept the author of the blog alive and hopeful. There were a lot of times I felt really dark and awful and like giving up, but somebody always emailed or commented and said exactly what I needed to hear. This is, obviously, the most important thing to me.

They bought a Therabite jaw rehab device for somebody who really, *really* needed it. The person in question had been through surgery and radiation and had a mouth opening of something like ten millimeters. The Therabite allowed her to stretch her jaw muscles to the point that she could eat, and brush her teeth, and talk intelligibly.

They donated nearly a thousand dollars to the Oral Cancer Foundation. That money will be used for research, education, and patient support. OCF is run by two people, mostly on one of the founder's money, and it provides *invaluable* support for people with head and neck cancer.

They donated a thousand bucks to Tashi and Wash when they needed it desperately. That money paid rent, bought at least two prescriptions, gassed up the car for appointments, paid co-pays, and bought Wash some hats to cover his bald head. And then some.

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

Every couple of days has been a new year for me, these last few months. Every few days I'm filled with excitement and exultation over the possibilities that you all have brought to reality.

I am immensely thankful. This blog's readers are the best readers ever.

Thank you. I keep thinking that nothing could get any better, and you guys keep proving me wrong.

Saturday, January 22, 2011

Roger and Me.

I do not deserve the good I have been given. That much is clear. I am a selfish, groveling attention whore whose most genuine feelings are dusted with self-promotion sequins.

*clears throat*

Earlier this week, I read a blog post Roger Ebert wrote about his new chin prosthetic. Something he said really touched--and I say that advisedly, because nothing ever "touches" me--me: "I accept how I look. Lord knows I've paid the dues."

I wrote him a thank-you for that blog entry, because it expresses how I feel: I've paid the dues; I accept how I sound. It's what I *am*, now; I really can't remember being any other way.

In that thank-you note, I included the link for Head Nurse. And tonight, I got a note from Mr. Ebert, telling me that he'd read the blog, Tweeted it, and send a donation to Wash and Tashi.

Which, after I'd finished hopping around and doing a fist-pump and calling Beloved Sister and Sainted Mother and posting on Jez and generally flipping the fuck out, made me sit down and think this:

This guy I've never met, to whom I matter not at all, was kind enough to click a link I sent him. Yeah, it's a second's worth of effort, but you never get that second back, and who knows if he was wasting his time?

He then found the top post about Wash and Tashi, and read it, and read their story as Tashi tells it, and decided to send it out to the however-many followers he's got on Twitter.

It's not a big deal, until you realize how big a deal it is. Somebody I don't know took the time to check out something I wrote and take up for a couple of people neither one of us knows in the flesh, in a way that could potentially make a huge difference for them.

Tashi and Wash love each other like most of us would be lucky to love somebody after a lifetime of misdirection and mistakes. Wash got the short end of the stick with his diagnosis, but the long end when it comes to having somebody who's willing to fight for him regardless of what obstacles are put up. The idea that somebody who can make a difference could be moved by that isn't so hard to believe, until it happens.

There is a book by Emma Bull called War For The Oaks. It's uneven, and a little weird, but in it, Bull writes that the words "Thank You" have a special power for people who aren't exactly human: fairies never use that phrase to each other, unless it's because one of them has gone to immense, life-saving lengths for another. Those words signify a debt taken on voluntarily that can never be paid.

Mr. Ebert, thank you. With one tweet, you've done more for two people than I could ever do in another ten years of blogging, and you did it in response to what was not-so-subtle attention-whoring.

I do not deserve the good that comes of this, but thank you. Thank you.

Wednesday, January 19, 2011

Okay, people. You want something to do? I'll give it to you.

A couple of months ago, just before Christmas, I asked the readers of HN if they'd mind if I gave their hard-earned, donated dollars to a cause that wasn't directly connected to oral cancer.

You guys gave me the go-ahead, so I sent a thousand bucks to my pal Tashi. She's a fellow Blogspot blogger; somebody I met through a mutual friend (Lara) and through Jezebel, where we both post.

Tashi has a husband, called Wash on her blog. Wash was diagnosed a few months after they married with glioblastoma multiforme, stage four. For those of you who are not in the neuro-know, glioblastoma multiforme at that stage carries a one-hundred-percent mortality rate. The primary population diagnosed with it is men in their fifties.

Wash was 24 or 25 (I can't remember which and can't be bothered to check) at diagnosis.

One in forty-three million people will be diagnosed with a glio at that age.

I thought *I* had it bad: one in five hundred thousand people will be diagnosed with my particular type of oral cancer this year. I have oodles of company when compared to Wash.

Wash has survived past expectations: he's lived fourteen months with either a tumor or the threat of the tumor coming back, which is *huge*. Unfortunately, that survival has come with costs: Both he and Tashi have had to drop out of school. Tashi had to quit her job once it became clear that Wash couldn't be left home alone due to loss of memory and inhibition.

They survive now on state aid, which, being as they live in Arizona, isn't much. Plus, Tashi has to reapply every so often to the various programs in order for them to keep covering rent.

You guys made it possible, with the money you donated, for them to cover rent for a month, and gas money, and a couple of prescriptions, and a warm hat for Wash to wear during the winter months. I am asking you to put yourself and your hard-earned cash out there again, because Tashi is asking for it.

Here's the deal: Wash has a limited amount of time left. Bluntly, he'll be lucky to see June. He knows this, and he's opted out of further treatment. More chemo and radiation would only make him miserable, and wouldn't extend his life appreciably. Tashi, tasked as she is with both taking care of Wash and making ends meet, is at the end of her rope.

She needs money. Plain and simple: she needs cash to buy drugs, or pay for gas, or pay the heating bill. She's asking people to adopt a bill for her here. Please help.

I ask this of you guys on her behalf not because I feel for her, though I do. I ask because she's a funny, smart, insightful person whom I've come to like very much over the last few months. I ask because when I got my diagnosis, the first person besides my sister to offer support was Tashi--even with all she had going on, she still sent me emails that helped buoy my spirits. I ask because she's snarky and intelligent and is living on the bare bones that any person could live on and still take good care of somebody that they love. She is giving Wash the best life possible, given the circumstances. She's doing something I don't think I could manage, even with an extra fifteen years and all this nursing experience.

Tashi's and Wash's story is here.

Be warned: even knowing what I know of her, and of Wash, I was still in tears by the middle of the second page.

Tashi is *so* gonna kick my ass when she sees this. Please, please make it worth my sore-assed while.

Thank you.

Fall before me, "Cake God".

Two pounds of flour.

Three pounds of sugar.

Two boxes of cocoa.

Two pints of buttermilk.

A dozen eggs.

Three packages of cream cheese.

A pound of butter.

Four ounces of vanilla.

Two pounds of powdered sugar.

I will take you down.

Tuesday, January 18, 2011

Well, that was....squishy.

Dr. Crane says I'm healing beautifully. I'm going to have a PET scan in a couple of months (well, April) to make sure that no nasty bits are hanging out in my neck, or anything. Tomorrow I'll get molded again by the Prosthodontics Elf, which should be a hoot and a half.

And the mammogram? Not painful at all. Not even cold. I think this comes of going to a place that does only mammograms all the time.

The positive experience did not stop me from doing a cross between the Time Warp and the Hokey Pokey at the check-out desk, though. Not at all.

Sunday, January 16, 2011

Things Nobody Tells You About Having Cancer, Part Three-Hundred-Something: It's a Pain In The Ass.

No, really.

Cancer is a pain in the ass.

I read a little squib today on Discovery about how inhaling cigarette smoke was equivalent to having gene-changing chemicals INJECTED INTO YOUR BLOODSTREAM HOLY SHIT OMG and immediately started wondering: If I sit at the bar, where I'm accustomed to sitting, at My Favorite Neighborhood Restaurant, am I putting myself at risk for Moar Oral Cansuh?

Oh....wait a minute. I like my burgers well-done. That would do it too, right? Because charred meat is a RISK FACTOR FOR CANCER OMG HOLY SHIT. Right?

What about my daily commute? Is that putting me at risk during the winter (more stress) or the summer (more UV exposure)? Am I breathing in fumes that might cause CANCER OMG WTF PONIES?!one?!

Getting away from the paranoiac fantasies in which Jo's Blonde Brain (oh, shit. That hair dye I'm using. Is Fekkai Golden Red a problem?) indulges, you get to the nitty gritty: scheduling.

Next week I have a checkup with the surgeon and a mammogram on the same day, which means that I can only meet Attila very early in the morning or later on in the day. I'll have to meet her late on Wednesday, because I have a prosthodontist's appointment at oh-dear-thirty that morning, which means that I really ought to meet her late on Tuesday, after the mammary-smush and sinus-probe. But that means that I'd have to meet her very early or very late on Thursday, when I have Random Scan Number One. If I meet her very early after two later workouts, does that mean I'll be unable to walk over the weekend, when I have to work? What about travel time? What if my molding appointment runs over? What, Frog forbid, if they've lost my paperwork at the Boob Smush Hut?

Oh, fuck. I just remembered that my surgeon changed buildings, which means that I'll have to pay for parking, or take a shuttle from the free parking to his building, but I don't know where the Boob Smush Hut is. Do I have to take another shuttle? Does the shuttle even *go* there? Would it just be easier to drive? Will I want to drive? What if I have forty-five minutes between appointments? I'll get hungry, right? So should I eat at County General or go get barbecue? Can you eat barbecue before a Massive Boob Smush? How early should I be there? Can I call them from work tomorrow and not stay on hold for 25 minutes like I did to make my appointment?

And does it all matter if I plan on tonight's dinner being chili and Fritos? I mean, should I just give it up and start smoking crack? Or are Fritos protective against DNA changes?

And what about that hair dye? I was going to dye my hair tonight, because I buzzed it off this morning after deciding that it's just too big a Pain In The Ass to grow out at the moment, and it needs a little something.

And so on, and so on. Mostly I'm not paranoid, but sometimes...sometimes, in the middle of the night, I'll get up and Google various symptoms.

And *that*, my fiends and faithful minions, is what makes cancer a pain in the ass. Even when you're healthy, you'll be presented with reasons to be paranoid. If you're going through treatment, it's even worse: the symptoms you have in response to things like chemo and radiation are nothing anybody should have to go through without a nursing degree. (Lara called me the other day: Is it possible to have an allergic reaction X number of days after chemo? Highly unlikely, I said, trying to be reassuring, because I know how fucking frightening things can be.)

Back at the beginning of all of this, Nurse Ames walked into my house to find me with my right hand shoved wrist-deep into my mouth and the kitchen and my shirtfront spattered, covered, streaked in blood. I'd popped a stitch, and the results were something out of a horror movie.

*That* is what having cancer--or having had cancer, or being on the mend from cancer--is like. A very minor thing that would normally bother nobody becomes, without anybody trying, a huge fucking OMG deal with ponies.

Tuesday. Tuesday. Tuesday I get my sinuses scoped. Tuesday is a very big deal, and a very big pain in my ass.

Y'all go on ahead; I'm just here making cookies Sunday night:

Saturday, January 15, 2011

Bonus Post, written a while ago: How To Cut Your Hair If You Have CANSUH, by Jo.

Inspired by my pal Lara, who decided to go Bald a couple of weeks ago:

First, indulge in your favorite vice.

It doesn't matter if it's caffeine, green drinks, alcohol, sodium, or nicotine: you'll need something to ease the shock of going hairless. Indulge.

Second, find a friend.

Going hairless is hard. It means not only that you're sick, but that you look sick to other people. Once you buzz off your locks, there's no hiding that you have something wrong with you. Even the most intentional, carefully-dyed Annie Lennox locks will draw second looks from people in the local Target. Friends help you get through it.

Third, be thorough.

Make sure your hair is clean and dry. If you're altered to the point that you can't be trusted to pick out clipper guards, have your pal do it. Do not, under any circumstances, go after your bangs with a pair of nail clippers. Make this an event, not an afterthought.

Fourth, be relentless.

Make sure everything is even. If you have eighteen hairs left on your head, be certain-sure that those eighteen hairs are all a quarter- or half-inch long (whatever you've chosen), and that none of them are out of alignment. That makes your haircut look like something you've planned, and not something that just happened to you.

Fifth, consider dye.

I dyed my hair screaming orangeish-red, the color it was when I was a teenager, just after I buzzed it short in anticipation of radiation (which, Praise to the Power, did not have to happen). Beloved in Beer saw me as I was sitting with the dye on my head and was not freaked out, and later said, "You look just like you did when you were eighteen."

If you can, make the loss of hair something that looks intentional. Even if you're sick, one person out of three will instead assume that you're incredibly bad-ass.

Just after I had shaved my head, when I was mourning the loss of my hair, a man stopped me in the grocery store. He was six foot something, and Black, and had dreadlocks down to his waist. "I'm sorry to bother you," he told me, "but I have to tell you that that is one kickass haircut."

"Thanks!" I said, "You're not so gruesome yourself."

Sixth, look at yourself hard.

It's hard, hard, hard to see yourself in the mirror once you've gotten rid of that stuff you've combed over or twisted up or pulled back. Do it anyhow. Notice how your face looks different, how your eyes pop, how your jaw is more defined. This is how you'll be looking at yourself for the rest of your life: in varying ways due to varying circumstances.

Seventh, be not afraid.

If you really can't stand it, it'll grow back. In the meantime, wear a hat.

Eighth, while we're on the subject of accessories....

Hats are not an admission of defeat. Neither is really amazing, tarted-up-like-a-three-dollar-whore makeup. Nor are tattoos or scarves or earrings or anything else you might do to deal with your bald or buzzed head. Anything you do, other people will see as an accessory, even if you see it as a compensation.

Ninth: Scars are not bad.

If you lose your hair secondary to radiation after a radical neck dissection, wear your scars with pride. You're on the upside: You one, cancer zero.

And even if IT wins in the end, you've had a few months of kicking its ass.

Tenth, It Will Grow Back.

Cancer does not change who you are. It might, for a short amount of time--but the number of people whom CA NSUH changes permanently is small. We always revert to who we are at the end of the day.

If you want a mullet, your mullet will grow back. If you want waist-length, wavy stuff with red highlights, that'll happen too (shout-out to Cenobio!). If you decide you really like the buzzed look, you can keep it.

Cancer can't change who you are at the core. It'll change how you think, for a while. It'll change how you eat--maybe forever. It'll change how you feel about stuff, off and on. It'll change how you look--but that's in your control.

But, at the end of the day, you are still Lara. Or Jo. Or Cenobio. It's a fucking clump of fucking crazy cells; it's not the end of you.

Have fun with your trimmers. Make sure they're sharp.

Babies and beer for breakfast.

Not babies for breakfast, I don't mean. That came out all wrong.

This has been a hellish week on the unit, mostly because staffing sucks. I've had nightmares every night--and when you're getting six hours' sleep at the most, spending even a few seconds of it back at work is too much--and the topper came this morning:

I dreamed I was stepping on and in piles of imported cheeses in order to get to a dinner party I didn't want to go to, and sit next to a woman I particularly dislike. In my dream, I threw a temper tantrum.

So this morning I cancelled my workout with Attila, turned off the telephone, drank two cups of incredibly strong coffee with cream, and then made:

Eggs, softly scrambled and baked in a tomato
Mushrooms, broiled with butter and sea salt
Sourdough bread I made last week, toasted
Lashings of triple-cream brie
Imperial Stout with an ABV of 10.

Thirty-nine hundred calories later, I feel almost human. This has as much to do with the fact that I served breakfast on vintage Fiestaware with a real cloth napkin and a flower in a tiny Fiesta bud vase in front of me as it does with my blood sugar normalizing.

Staffing has been...well, frankly, I'm concerned about my license--and the safety of my patients--after this week. Things have been busy, we've been understaffed; I'm tired of being alone when a crisis hits. I'm not sure what I'm going to do about it yet, but it'll probably lead to some sort of snarky showdown and then a temporary improvement in conditions.

So today? Is off the chain. It'll probably involve my dropping way too much money at the local hippie-dippie market for more cheese, scented holistic vegetarian one-world body washes, and a massage. I might get a pedicure as well. Perhaps I'll even watch a movie (I have "The Thin Man" coming today from Netflix, and why didn't anybody tell me Netflix is like crack?).

Later tonight, The Man of God and his Lovely Wife are having a little Do so that everybody can meet The Child of The Man of God. He's cute, in the way that cute babies end up being unfortunate-looking children and good-looking adults. His nose is way too big for his face, and he's as long and skinny as somebody who crawls under doors for fun.

I figure beer (and cheese and mushrumps and toast) for breakfast and babies later is the best way to wash the taste of this week out of my mouth. Tomorrow will be yoga and vegetables; for now, it's a free-for-all.

Thursday, January 13, 2011

In honor of the Manhandler's party tomorrow night:

What it's like to have had cancer.

You expect things to be different after you get the diagnosis. You expect things to be easier somehow, or more clear-cut, or somehow more differentiated. It doesn't happen that way.

Instead, what you find is that you have the same decisions to make as you did before diagnosis, but now they're complicated by how much energy you think you'll have at a given time and how much nausea you think you can get through at a certain point in your treatment.

I'm thinking about next week: I'll have my second post-op, first-post-healing checkup with my surgeon, and a mammogram (baseline) and a molding for the intermediate fucking prosthetic all in the same week. It's not a question of what I can manage physically any more; that excuse went away about six weeks after surgery. Now it's a question of what I can handle mentally, and there's really no excuse there.

Low-grade. Low-grade. Very little chance of recurrance, excellent prognosis. Yet the reaction is never low-grade; it's always the same, whether it's a high-grade lesion or not. Either way, you behave as though the hyenas are circling. The only difference is how long you have to behave that way.

Next week, next week, next week. On Tuesday I see the surgeon and get my breasts x-rayed for the first time, as a baseline for the future. Given that I had a PET scan less than four months ago, I'm not worried that they'll find anything nasty in my mammogram. (I looked like a bug on a string in the PET scan's outline: arms and legs splayed out as they instructed me to hold them, and a big round-bellied body outlined with radioactive glucose solution.) It's just a reminder that cancer might still get me, and in a different part of my body than it tried before.

If they do an MRI, they won't see any regrowth of tumor at this checkup; it's that low-grade. Same with a CT scan. PETs only catch things that are larger than a half-centimeter in diameter. The last PET barely caught my tumor. So, realistically speaking, we can't do much until any tumor that might regrow has gotten large enough to merit notice outside of any special screenings.

Which, given the habits of this type of cancer, might take ten or twenty years. Low-grade, low-grade, low-grade. Excellent prognosis, especially with wide excision.

I had a dream the other night in which I was speaking clearly. I was just dozing, so I woke up with a start as the dream barely began to take hold.

Wide excision.

There is a plastic surgeon at work who's done pioneering work with muscle flap transplants in people who've lost their soft palates to surgery or accident. I wonder if it would be worth it to talk to him. As it is, I have to decide what's worth saying before I take the prosthetic out to go to bed. Sometimes this could be a good thing.

Years and years ago, I had a lover who was deaf. This was before the days of cochlear implants or small hearing aids. It bothered him immensely that he couldn't hear anything after he'd unhooked his aids and put them on the bedside table, whereas I thought it was unusual and romantic to have to trace letters on his hands. Now I understand how he felt, a little.

Low-grade, low-grade. Small chance of recurrance with wide excision; good prognosis.

What if the wide excision I had wasn't enough? What if I have to sacrifice more than I already have?

Sainted Mother sent me an email today...

A friend of hers and Dad's had a Mass said for me at her church today. I find that very sweet, and take immense comfort from the idea that she asked her priest to dedicate a Mass to me.


The priest began the Mass with the following words:

"This Mass is for the repose of the soul of Jo, who...oh, wait. Never mind. She's alive."

As a friend of mine said, "This could only happen in your life."

Um, yeah.

Saturday, January 08, 2011

So I was thinking tonight about jobs I'd rather not have.

It struck me that Ginny The Highly Inappropriate Chaplain has a much, much harder job than I do.

Nurses like to bitch. It's what we do to ameliorate the hell of being a nurse, of being torn between the lab and the doctor or the patient and the family or the law and ethics. We bitch, we moan, we make bad, bad graveyard jokes that anybody not in the profession would blanch to hear. But, at the end of the day, we have one tool in our arsenal that nobody else in the hospital has:

We're the ones that make patients feel better.

Think about it: if you're hurting, or you have indigestion, or you have some weird itchy rash that needs to be taken care of, who do you ask for help? You hit your call bell and you ask your nurse. And your nurse either brings you pain medicine or gets you some Maalox or finds you some magical cream to help your owie. Nobody else in the hospital can do that as reliably as we can. Sure, it's a pain in the ass sometimes to call doctors or fight for pain relief or get a scrip for X Miracle Cream, but we do it, and people feel better as a result.

It must be hard to be a hospital chaplain, because things just aren't that easy for them.

The chaplains have to deal not only with the people who are hurting and afraid, but with family members who are probably hurting more and are more frightened than the patients. Believe me: when you're a patient facing down a surgery, fear is a minor part of what you're feeling. Other people are handling that for you; you're much more concerned about whether the anesthetic will work or if you'll spill your guts in post-op, then vomit uncontrollably.

We nurses deal with specifics. You hurt, I bring you pain medicine. You've had a stroke and so your left arm is weak, so I teach you how to strengthen it.

Chaplains deal with the tough shit. Why is this happening to me? I didn't do anything to deserve this; why do I have to go through it? Is giving up a bad thing? Is giving up on Mom or Dad or Grandma a bad thing? Is it really giving up, if you think that maybe that person is ready to go? Am I ready to let them go? What, exactly, does letting go mean?

Why does God let things like this happen?

We nurses deal with specifics. Why does my body do X and Y when my brain has done Z? There are concrete answers to that. After enough time, every nurse can say with confidence that he's seen this sort of thing before, and this is what you have to expect in the future.

Chaplains don't get that certainty. They get certainty of a sort, because without a belief in some sort of Greater Good, they wouldn't be chaplains. What they don't get, though, is easy answers, or concrete examples, or even the ability to reassure people that, while things seem unfair, they really do end up moving toward good. All of that is predicated on a much, much longer timeframe and bigger scale than we humans have.

We may bitch, but we have specific, timed, and measurable goals to hit. We have ways of judging our performance that people whose care is focused on the soul don't have. They do what they can and trust to the future and take their comfort where they find it in a way that we don't have to. We're lucky: we might deal with blood and puke and shit all day, but they deal in pain and loss and sadness. And occasionally reconcilliation and hope, but I think probably less than they'd like to.

I'm reminded of something that Susan Palwick said in one of her ER poems over at Rickety Contrivances of Doing Good: it's so easy for *us* to feel holy when *they're* asleep. That, I suspect, is the only break people like Ginny get.

Hug your chaplain today.

Stolen from The Daily What

I kinda know how that cat feels sometimes.

Wednesday, January 05, 2011

In which Auntie Jo admits bafflement via memes.

A number of things baffle me: the popularity of Nirvana, why people like the Doors, why Cyndi Lauper didn't make it as big as Madonna, why people eat Pei Wei, why people in traffic swerve suddenly to the right and accelerate when it's obvious that there're slower cars right in front of them....I could go on. I spend most of my day as baffled as a bathroom geyser.*

Dickishness baffles me.

Today, one of the attending physicians showed up in the unit right before I went to work.

Now, this dude is one of the more socially ept surgeons we've got. He's a popular guy: well spoken and attractive (and believe Auntie Jo when she tells you that "well-spoken" is not a backhanded compliment a la Joe Biden; it's rare in neurosurgeons) and generally well-liked. He and I had a brief conversation back before I had surgery: he'd asked what was going on, and I'd told him, and further told him (in response to the same joke I'd heard 5,000 times by then) that I was really afraid of how I'd sound after the procedure.

I was--and still am, though to a lesser degree--self-conscious about the way I sound. This week I've had a bit of a swollen throat, thanks to allergies, so I sound much more nasal and stuffy than usual, and my nasal airway is pretty closed off.

So when Dude-Bro showed up on the floor and asked if I had a cold, I didn't think much of it. The woman who was working with me (the lovely and protective Kari) said, darkly, "She doesn't have a cold; she had surgery." Doctor Dude-Bro then said, "I, you got a cold, or what?"

This was me just then:

Then, as I was driving home, I had a chance to think about it. Really think about it: that Dr. Dude-Bro, in addition to throwing me under the bus a scant two hours later, went out of his way to be prickish right then, and for no reason.

This was me just after that realization hit:

I'm just gonna go eat nachos now, and maybe watch Enchanted.

*I don't know what that means, either, but it's Dorothy Sayers so it's got to be good.

Sunday, January 02, 2011

You can lead a horticulture, but you can't make her think.

Dear Birthday Frog:

(What? You've never heard of the Birthday Frog? The Birthday Frog is like the Easter Bunny or Santa Claus, but he brings birthday presents. Get with it.)

I would like, please, for my birthday this year... ... ...

Twenty-five strawberry plants, variety Eversweet Everbearing (heat- and drought-tolerant!)

Two fifty-foot rolls of 48" chicken wire and five-foot fenceposts to keep Max out of the garden

Wire ties for the above

Gift cards to Gurney's and Burpee

A broadfork (Gempler's has a good one)

Three four-cubic foot bags of vermiculite

The use of a cruddy pickup truck so I can haul some compost from the dump

A twenty-five-foot roll of two-foot-wide professional grade weedblocking cloth

A gift certificate to Home Despot so I can build some trellises (trelli? Trellae?) for cucumbers and beans and squashes and so on

A new set of biceps.

Thank you very kindly,

Jo, who has been drinking the Gardening Kool-Aid

What to do if you have weird symptoms, and what happens next.

Auntie Jo has news for everybody: Most people who have strokes, whether transient ischemic attacks (TIAs, where the blood flow to a part of your brain is restricted temporarily) or not-transient ones, ignore the symptoms, hoping they'll go away. This is bad for a couple of reasons: First, you never know when the symptoms are going to worsen from inconvenient to life-threatening; second, if you show up at an emergency room with a stroke early enough, we can prevent a lot of permanent damage.

So: If you have weird symptoms including (but not limited to) weakness or numbness on one side of the body, difficulty balancing, vision or speech changes, or anything that just doesn't feel right, call 911. Don't go to bed and sleep it off; don't drive yourself to the ED (geez m'knees). Don't have a shot of Beam and hope it goes away, don't take six aspirin and call your doctor for an appointment next week. Got it? Good.

When you do show up at the ED, you're probably wondering what we're going to do to you. Listen up and be enlightened so things won't seem so scary:

Once you describe your symptoms to the triage nurse, he or she will (if she or he is in posession of a reasonable number of brains) get you back to the treatment area pretty quickly. You'll have a neurological exam that tests, among other things, your ability to speak, move all your limbs, see things all over your field of vision, and interpret situations.

You'll have to have a head CT scan, I'm afraid. This is because those of us in the brain business want to know, sticklers that we are, whether or not you're bleeding into your brain or have a clot in it. If your head CT doesn't show anything exciting, we can assume that you're not bleeding ('cause blood shows up like gangbusters on a CT) and can treat you for a presumed clot.

If you've presented to the ED soon enough (within 3 hours of the onset of symptoms in most places), we can start you on a clot-busting drug called TPA. It's given IV in a drip and schlorps around your body for several hours, hopefully knocking out the clot that's in your brain without doing any other damage. Yeah, there are risks, which usually involve unpleasant bleeding we don't want, but it's generally a case of less risk than potential benefit.

You might get an MRI as well, probably sooner rather than later, if you have any symptoms of bleeding, or if things aren't cut-and-dried.

You'll also get, at some point, a couple of exams to be sure your heart is doing what it ought to. This is because one of the biggest causes of stroke is a clot that travels from the heart thanks to something called atrial fibrillation.

Atrial fibrillation (or "A-fib" if you're cool like me) is a condition in which the top half of the heart, rather than beating regularly, sits there and vibrates, wagga-wagga-wagga. This allows blood to pool in there and clot, and then, if and when your heart actually manages a good solid beat, those clots go flying up into your unhappy brain.

We would do an EKG to check the rhythm of your heart, as well as an echocardiogram. That last is basically a sonogram of your heart that lets us know for sure that you don't have any holes in your ticker or weird shunts or craziness like that.

All of this is necessary because neurology is primarily done by exclusion: we knock out all the things that *could* be wrong with you (like neurosyphillis, alien abduction, or a bleed) and end up, we hope, with something that really *is* wrong with you. Incidentally, this is also how neurology differs from neurosurgery: neurosurgeons have you hop up on the table so they can root around in that ol' brain box and find something definite.

Anyway: If you're not feeling normal, and it's not a hangover, go to the bloody ED, okay? It'll make both of our lives easier in the long run. It'll also mean I haven't wasted my valuable time by typing all this shizznit out.