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16 June 2015 @ 01:56 pm
anonymousblack’s primer toward the long term psychological processing of cancer, pt. 1  
Cancer is tiresome. How is cancer tiresome? Let me count the ways.

First of all, the terror of it. As in eaten away and calcified with fear. Cancer is always there. It spends all your money and never replenishes the gas in your car. It talks smack about you to your loved ones, convincing some of them you're going to die and it's best to just abandon you to your precious cancer that you just had have: 'cos dying’s a sign of personal weakness, right? Because people who don't have cancer never do that.

Wake up in the morning to cancer punching its way through your bedroom door with an axe: "HERE'S CANCER!" Take the pill you must take every morning into oblivion because of cancer. Have some food once you are allowed to consume food again, but! Not anything iron rich, not anything calcium rich, not at least for four hours, and god don’t you even think fondly about grapefruit ever again. Thankfully, none of these items are in abundance in one’s most readily accessible breakfast materials. Look at job listings, cancer's right there with you, chewing with its mouth open, folding creases into the spines of all your favorite trade paperbacks. Goddamnit, cancer. We talked about this. If you're going to keep hanging around, I need you to start pulling some weight. Like maybe you could vacuum. Scrub out the mildew stains in the toilet. Cancer, isn't it kind of late for you to be sitting around in your underwear?

And then there are the doctors. Everything is about cancer with them. Because my mother had cancer, right? And now I’ve had cancer, right? Got me by the short hairs every time: what, this mole, get thee to a specialist, it might be cancer. Your iron levels, they are slightly low, let's get you a colonoscopy, it might be cancer. When was your last mammogram? Shouldn’t you be getting more of those? How about it, remember. It could be cancer. It was for your mom. It was for you. Let's get that thing biopsied lickety-split because you know what? It probably isn't, but let's just be on the safe side, your blood pressure was too low anyhow. Whadya mean sometimes your one boob hurts?

It's worse than me, even: the medical directives, the scrutiny and paranoia, early detection is your best friend, your considerate lover, your last available life boat. All the same, they're worse than me, popping awake, 4:26 and I only just fell asleep. But what is this irritation in my urinary tract? Did I read something several weeks back about a beverage I consume every day demonstrating an increased incidence of bladder cancer in the native culture where it is consumed every day? So by 4:43 i am yelling at myself (again) to not go look for information on the internet and by 5:01 I am looking for information on the internet (again) and cancer's having a good laugh about that one, I mean look at her! Seriously! What's going on with that?

And people want to help. At least, some people want to help. Other people want you to stop protruding from the side of their universe like some unsightly cancerous wart reminding them of failure, chaos, and the reality that sometimes the world is ugly and unfair and you cannot make it better with the sheer force of your will. These are the people I have been biting my tongue about, because I would love to be someone who can only focus on the awesome amazing wonderful good listeners and covered dish makers, the folks who’ve gifted me with inexplicably illegal discomfort moderation tools, the people who came over and watched movies with me when I wasn’t too radioactive for that, the people who loaned me Buffy comic books and sent me MP3 playlists through DropBox when I was, but, see, I cannot. Not always.

These other people. These less awesome people. I am going to describe them to you so you can give me and other cancer patients the gift of not being one of them, so pay attention. Their primary motivation is that they need you to make the world fair again, damnit, at least they need you to make their world fair again. What they need you to do is accept culpability for your cancer, already, or at least assure them that your cancer is not so big a deal. First they need to know what you did to get cancer. Then they need to tell you what to do to not have cancer anymore. Spoiler alert: it generally involves behaving a lot more like they do.

Such people tell you with authority about something they might have read or dreamed about reading once somewhere (but you're into that, right? You're all into dreams and stuff! Especially as the dreams of near strangers can always be applied to your healthcare needs!) that saturating your scalp every six hours with grenadine is supposed to prevent cancer. Also doing something with gluten but i'm not sure what just definitely not eating it. Only eat meat and root vegetables. Because those lentils you like so much might give you cancer I heard that somewhere too. And get yourself some assault weapons because you obviously need more pleasure in your life. Did you know that you can give yourself cancer? Just by thinking about it you can. Just by letting down your psychic defenses against cancer, you can get cancer. I mean you’re so negative. You talk all the time about what’s actually happening to you instead of what you’d like to believe is happening to you. That's probably why you got it before, because you're so damn dark and ornery. So come on! Do something I said to protect yourself against cancer! Start a gratitude journal! Do yoga classes! You want to get better, right? Finally, they need me to understand my unconscious supplication to western medicine’s culture of fear, the money-grubbing cancer perpetuating machine, because basically everything science does claiming to help me avoid getting killed by cancer before I turn 40 is actually giving me more worse cancer all the time.

P.S., NO.

And these people want to help, or at least they want to make the world fair again, so I ask them: so what kind of cancer, exactly, does this seemly unorthodox grenadine scalp treatment protect you against? Oh, I don't know. just cancer, I guess. Aren't they all pretty much the same?

oh god
no god
not red dye

sorry i forgot that gives you cancer.

Oh, and something else about the doctors? Something else about the doctors or at least the doctor’s support staff that nobody ever warns you about in the recovery room? Sometimes they are the “you are an unsightly cancerous wart protruding from the side of my universe” people. They force you into serving the role of the dark harbinger of cancer; at least the dark harbinger of us all being equal in the eyes of cancer. Because while everybody everywhere seems to know somebody who has dealt with thyca, nobody anywhere seems to have dealt with it in the first person, and the concept that: this person, this person who is now sitting here, on your exam table, in exam room three, this person who seemed like a perfectly nice perfectly normal person, who seemed like someone who would’ve kept her scalp soaked in grenadine like everybody knows you should, this person is someone who fairly recently dealt with cancer and oh, my god, she’s a girl like I am, and oh, my god, she’s roughly my age and and race and hair color and I must do something to differentiate myself from her, so it is imperative that I must tell her to her face right here in exam room three why probably she got cancer. Then I’ll get the prize, which is never getting cancer myself. Because that’s your greatest defense against cancer: vacuuming up logic into increasingly demented applications of bootstrap theory and victim blaming.

So they’ll walk into the exam room. They’ll smile at me in my medical gown. I’ll smile back. We will exchange a pleasant greeting. They’ll pick up my medical history. They’ll page through it with a growing look of concern. They’ll ask me about the sheet, hoping perhaps it is an error and this sheet actually belongs to a different patient, possibly a very surly one who is the opposite of several of our identifying variables, possibly one with the words “I WILL BE DIAGNOSED WITH SOME FORM OF CANCER SHORTLY AFTER I TURN THIRTY-SEVEN AND I DESERVE IT” printed across his forehead, in accordance with helpful local zoning laws. They’ll tentatively approach the topic: I see you went through something here. And I’ll nod, and they’ll nod. Having apparently given my absolute consent to play the game, the game can begin.

Attempt 1: It runs in your family, right?
Response: Not at all. The research indicates my variant of cancer is in no way hereditary. A lot of the time, people just get it.
Attempt 2 [may be cycled through several times with variations] But you [smoke, drink, get sun tans, don’t check for ticks, occasionally store your neck in microwaves, don’t maintain a gratitude journal, eat asbestos, eat red dye, eat babies, worship the devil] …right?!
Response: No.
Attempt 3: …Maybe like your diet? Maybe like, too much red dye or lentils?
Response: I mean, I’m a vegetarian. I do eat lentils, but my endo said diet really didn’t have anything to do with it, so I decided it was probably worth the risk. I need the protein!
Attempt 3 (cont.): But what gave you cancer?
Response: Nobody really knows what causes it. It just happens for some people. Usually women. Usually in our age group. They do think that this can be triggered by being exposed to radiation at a young age. The thing is, most of us have something like that in our history, I mean most of us at this point in history in this part of the world have no idea what that is, but it's usually there - it just doesn’t always become cancer, so there are probably other factors. If you're concerned, there’s this little self-check -
Attempt 4: [Grabbing onto this as tightly as they can] That’s it! That’s got to be it! That’s got to be why you had cancer! You grew up in Chernobyl, right? Or I bet your elementary school was on the property of an evil radioactive wizard? And you personally angered him in some way? I bet that’s it?
Response: ...no...
Attempt 4 (cont.) But that’s it! it’s got to be it! Please tell me what horrible atomic anomaly led to you being in this situation or at least help me make it your own fault so I can fall asleep tonight warm in my confidence that no such thing will ever happen to me for I am good and pure and beautiful and the angels love me too much.
Response: [shrugs] I guess had some dental x-rays when I was little.
Attempt 4 (cont.) [clearly this is my fault] AND THEY DIDN’T SHIELD YOU PROPERLY! I KNEW IT!
Response: …no, they shielded me fine.
Attempt 4 (cont.) B-b-b-but I had… dental… x-rays… when I was a kid.
Response: Shhh, shhh, I promise, you are no more vulnerable to cancer now than you were before we started this conversation.
Attempt 5: But I mean, you’re better now, right? And the treatment wasn’t so bad. It’s the good cancer, right? Right? It’s the cancer approximation of ice cream! It wasn’t that bad at all and now it is over forever and you don’t have to think about it anymore and you’re wise, and you post videos on YouTube of you expressing that wisdom and your gratitude for your brush with death that taught you how to live authentically at last. Sometimes you dance.
Response: I mean, I didn’t have to undergo chemo, at least, and I am very grateful it’s seemed to respond so well to treatment. But I lost a vital organ and I’m on prescription medication for the rest of my life and the cancer could reoccur at any time so I actually do have to think about it or issues related to it quite a lot. And sure, I’m grateful for my current prognosis. But I’m also pretty sure I was living authentically before all of this and I gotta tell you that catching yourself feel envy about people who still have non-cancerous - not even necessarily absolutely functional, sometimes just non-cancerous - thyroids, even when you know better, is some pretty messed up, guilt inspiring bullshit. Among other very weird and horrible mental places that you seem to go without your own knowledge and startle into awareness in the middle of with absolutely no way out but time. Also I am here. Sitting on your exam table. In exam room three. Because maybe I have a different kind of cancer, which, you know, could also happen. Like it could. For anyone.
Admission of defeat: Oh god, oh god, oh god.
Response: Hey, look, I’m sorry for disabling your capacity to maintain the Just World Hypothesis but really… could you please just take that scalpel over there and gouge this here suspicious looking mole from my body so we can find out if I have cancer again, as I was promised at the consultation? Because I also used to be good and pure and - sorta attractive, at least if you’re into that sort of thing - and some angels dug me a bit, too, but now I am very hungry and would like to go home to climb fully clothed into the empty bathtub because everything in my life continues to descend into horrible chaos that’s killing me slowly, at least until the results of this biopsy come back.
Admission of defeat (cont.) [sobbing uncontrollably] Please leave.
Response: Could I put my clothes back on first?!
Admission of defeat (cont.) NO.


It really is astonishing how often cancer patients must comfort near strangers about the existence of their cancer. Please do not be one of these people.

I do not (hopefully, knock wood, god an' willin', by jeezum crow, don’t forget to tip your servers) currently have cancer, but I will be a cancer patient for the rest of my days. And it is tiresome. It is tedious. It is expensive and confusing and sad. You cannot convince me otherwise, especially if you've never had cancer yourself, so please do not try. My body is different now, because of cancer: I lose all kinds of hair. I’ve put on twenty pounds. (“You were too skinny before anyway,” the helpful people say helpfully, often smiling and laughing. And I smile, and I kind of laugh, and I am polite as I can be - because I want to be kind! I want to be grateful! I want to be a magical unicorn starchild who can speak to the masses about how my cancer gave me back my soul! And taught me to love! And now I am completely recovered and safe from ever going through that again! And also I went through it so you don’t have to and I am sooooo happy I got to do that for you! And everything’s sparkles and rainbows forever! At the very least, I want to seem polite - even as my brain sweats with the repressed rage of “YOU WANNA BUY ME A NEW FUCKING WARDROBE, HELPFUL PERSON? BECAUSE CANCER SPENT THAT RESERVE TWO YEARS AGO ON NO-SODIUM ADDED BROTH AND JOY-FREE CHOCOLATE.” Little in-joke there for my thyca brethren.)

In the interests of preventing a return to cancer, I am taking a slightly excessive dosage of my hormone replacement. This prevents my confounded body - Heeeeeey, thyroid! what's going on over there? Hey! Thyroid! I’m talking to you! Why aren't you working, thyroid! Why do you never answer the telephone! Fuck it, thyroid! i'm shooting some wake up juice at you! Which is bad, because the wake up juice could sprout tissue somewhere and that tissue could have more cancer.

Yes, you can get thyroid cancer again.

Yes, you can. Even if you no longer have a thyroid, you can. Don’t you doubt! Don’t you go saying that’s not possible at me! I just explained how it is possible to you! If that wasn’t a thorough enough explanation, just accept that cancer is like that jackass predator that’s been stalking you in your dreams since 1986. It knows where you are. It knows where you are everywhere all of the time. It knows things about you that nobody else knows. Don’t even think it doesn’t. It isn’t because of western medicine’s culture of fear. It’s because cancer is genuinely horrible and awful and unfair and terrifying and it is that way all of the fucking time. And it hasn’t scrubbed out the damn toilet yet either.

So we are all tip toeing around the thyroid's abrupt departure over the course of a few hours on a working holiday in 2012. We must keep the pituitary in the dark on this issue for half a decade because it cannot be changed and life must go on. The dosage excess is basically gaslighting my pituitary gland into not sticking its nose in it. But the body is never a stasis and what was once a good number for you can suddenly be too high or too low and both situations have their undesirable qualities. Earlier last year my dosage was suddenly too high and I became insatiably hungry and paranoid. Paranoid about everything. Paranoid about hats. In early 2013, it was too low and I was exhausted and sad. In neither scenario do I sleep. Well, except when I don't want to, but that’s nothing new. Sleep won't fuck me, I’m not cool enough for sleep. Anyway, I think sleep might be doing cancer on the side.

And then there's my neck, my long graceful neck, ballerina lilt except now the line is interrupted by the cancer scar. Every photograph! Every job interview! every stilted conversation with a grade school friend who wasn't following me on Facebook at the time! My subliminal ballerina joke is ruined: but oh, well

I really always was
more of a black swan.
growsgrows on June 16th, 2015 06:41 pm (UTC)
this is powerful and hilarious.
selva oscuraanonymousblack on June 16th, 2015 09:43 pm (UTC)
thank you.
[redacted]elsewhereangel on June 16th, 2015 08:22 pm (UTC)
The degree to which people finger point about cancer horrifies and amazes me.
selva oscuraanonymousblack on June 16th, 2015 09:48 pm (UTC)
way too much in common with the way people treat survivors of sexual violence. folks with problematic tendencies are so busy scrambling away from it themselves they don't really care who they trample on the way out.

on the plus side, i'd already lost a good deal of my faith in humanity due to issues surrounding that, so i was just disappointed and frustrated, not disappointed, frustrated and newly disillusioned.
(Anonymous) on June 17th, 2015 10:44 pm (UTC)
primer pt 1
Excuse my anonymity
I retired from LJ a while back and rarely return but for some reason, much like Alice's fall through the looking glass I landed on your journal.
I think you have written no less than a magna carta of patient care or lack of.
This should be mandatory reading for all of us as we weave in and out of the medical morass.
I am just overwhelmed by your talent

selva oscuraanonymousblack on June 18th, 2015 01:02 am (UTC)
Re: primer pt 1
anonymity is a big thing around here, or at least it used to be before places like vimeo insist on using my actual name for stuffs.

thank you for your kind words. and hey, check back, 'cos i got more in this series and i can't really post it to the blog the facebook knows about. ;-)
Nevarranevarra on June 18th, 2015 12:35 pm (UTC)
I'm with anonymous. I think this should be put into one of those pamphlets that you see tucked onto the shelves in the waiting room of the doctors' offices. "So Someone You Know Has Cancer...How Not To Be A Complete Asshat."

Seriously. Required reading. A stack of 20 should be handed out to each patient for their relatives and friends and a smaller, business card sized version to keep on you for the random douche you encounter who decides to inundate you with their cures. Because you know, you MUST have thought about getting cancer and that's why you got it, right?

WTF. I'm angry for you. I get that there's the uncomfortable aspect of not exactly knowing how to best handle it when someone you know has cancer. It's easy to say something insensitive. But part of trying to be a support is asking about that! Checking in! Making sure you're supporting in the best way they need to be supported. But treading over a line that you're not sure where it lies and leaping headfirst over it into a somersaulting barrel roll, leaping up with your arms in a victory "V" and yelling, "Booya! Stuck the landing!" are two very different things.

Edited at 2015-06-18 03:37 pm (UTC)
selva oscuraanonymousblack on June 27th, 2015 08:11 pm (UTC)
I've been - maybe not the asshole, but definitely freaked into having no idea how to speak to the situation. I remember face planting and disappearing into myself enough so that my Dad needed to dress me down about how I was doing with my mom twenty years ago. Of course, I was nineteen. And the daughter, a trip that comes packaged with some heavy shit as far as breast cancer is concerned. Most of the friends who bailed on me or made clear that they were only going to stick around if I didn't get my stinky cancer in their face were significantly older than that and friends, not inheritors of my DNA.

Still, I get it. We're at an age where most of the people we've known with cancer are not amongst our immediate peers. I was the first friend with cancer for several people. Or it's one of those awful situations like my one friend who's still... having some trouble with me, but that's because of her family history. We talked it out and we shared our anxieties about not being supportive enough to each other and we apologized and it's a continuing process, but it's so much better than it was that first year.

In most cases, all it takes is an apology and a demonstration of investment. "I know I was an asshole. I'm sorry that I was an asshole. I want to be your friend again. Here is some tangible demonstration of the work I am willing to do to make you feel like we can be in each other's lives again." Just speaking up speaks volumes. And then, you know, being willing to listen instead of being deafened to somebody who needs you because of your fear. The fear sucks, by the way. We need people willing to let us talk to them about the fear. And not in a way where we tie some neat little "everythin's gonna be OKAY" bow. Because I know as well as anyone that it might not be, and sometimes that's what I need to talk about.

But this - bullshit? About trying to tell someone how to treat it, or why they got it, or how to never get it again?! Never, never, never, never. The scientist who has studied this specific type of cancer over the course of her entire decades-long career doesn't know why it happened or with absolute certainty that the treatment is going to be completely successful?! That means my Facebook friend does not have all the answers no matter how many articles they read at stopthethyroidmadness.com (a website you should never, ever go to, especially not as a thyca survivor. The misinformation is horrifying, though it pales in comparison to their Facebook group.) And the victim blaming? *slow exhale*

First installation in a series, I hope. Maybe I'm writing a book.

Edited at 2015-06-27 11:18 pm (UTC)
translucentflowerfalls on June 18th, 2015 05:03 pm (UTC)
you're awesome
selva oscuraanonymousblack on June 27th, 2015 07:43 pm (UTC)