anonymousblack: ([mom] boys and girls)
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?
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.
anonymousblack: ([magritte] it's not an apple)
oh, thank god. my synthroid dose is too high.

in october, i tested on the low end of my target range for tsh suppression therapy at 0.1. today's bloodwork had me at .04, so according to my doctor, i would have definitely been experiencing hyperthyroid symptoms. she's stepping me back to the previous dosage level, and i'm not even going to have to do a day by day switch between 150 and 137.

(wha-wa-wa-wa this-is-not-my-universe translation: i am not developing diabetes or suddenly going a new type of crazy, which have been the two primary channels of anxiety for the last couple months. i'm all but sobbing with relief.)
anonymousblack: (WORSHIP ME YOU SNAKE!)

shrine cabinet in august 2013

wednesday i moved the shrine cabinet (need to show you some even newer pictures) into the study. i thought it would make it easier to use actively; give me somewhere to put the zafu or witch table if i want to meditate or work in front of it. the only real draw back is that i won't be able to sit with it on the couch--sometimes when i can't sleep i'll go into the front room, light the butter lamps and listen to music while they burn down. sometimes there's enya. it's nice. but really, i've been concerned about something with so much that is important and breakable in the swing radius of the porch door and it really was difficult to actually sit with the shrine, you know, as it was, actually meditate or practice. you were sort of jammed up strangely in a corner.

so on a fiercely bad suppression day, i disassembled the shrine, piled up my relics into ikea boxes, moved the cabinet into the study, smudged, then put everything back together. i'm not sure yet. it does have a strong presence in the room, but it's awfully close to the computer. i mean from the whole "some days it is a lot easier to fuck around on facebook than cope with spirituality" perspective.

slightly blurry reference shot i did not end up using

for the equinox, i started a releasing ritual, very loosely modified from here. (was angelfire actively target-marketed toward neopagans, ceremonial magicians, S&M practitioners and punks or was that just how it turned out?) wrote intentions, burned intentions. used a bit of quadrivium's cut and clear. started on the fringes with the names and the externals, worked my way through to the underlying issues; what i've been using the externals to distract myself from. cried, of course. threw the ashes off the balcony.

it occurred to me that the reason ritual always feels so awkward and unsatisfying is probably because i still have to roll that learning curve. the legacy of the bellydance video has been humbling myself to the idea of "i'll try again tomorrow, and if it still doesn't go the way i want, i'll try it again the day after that." instead of giving up, i try again, maybe this time with more realistic expectations regarding my aptitudes and ambitions. so maybe if i can actually do a ritual more often than when something has become entirely unbearable, i'll be able to get more out of the unbearable rituals.

we'll see.

second slightly blurry reference shot i did not end up using


wednesday night i started the ecstatic poetry class. i am astonished and slightly ashamed at some of the weird habits i've developed in writing poetry. yes, i suspect that needing to run an internet search on a term, concept, or reference is something that should happen in the revision process, but i seem to have grounded myself in the habit of stopping everything to look the term, concept, or reference up while i am trying to connect with the spirit of a piece and damnit, i should know better than that. i used to.

i just need to stop trying to "protect" myself from certain types of criticisms with research while i'm still in the delivery room, bringing forth the first rush of inevitably imperfect language. a lot of my best work--particularly in prose--does come off the pen without needing a lot of polishing. i'm not (exactly) bragging, it's something that's occasionally a real pain in the neck, especially for creative writing teachers and workshops. and for switching back to poetry. it's like learning to walk again, scribbling down something so undeveloped and letting it exist like that, at least for a time.
anonymousblack: (painted lady)
it's strange to wake up surrounded by internists.


especially when they are smiling at you.


we arrived at 6AM on NYE. they took me back into prep, which was bustling when i first arrived and then practically empty after the first ten minutes. the administrators were taking down the christmas decorations. i took yet another pregnancy test and changed into a gown. the tech installed the IV port, smoothed a warmed blanket over my lap and let ben come in and sit with me while doctors and assistants and nurses came by to explain things to me and have me sign forms. everyone asked me my name. everyone asked me my birthday. everyone asked what i was having done. almost everyone asked when i'd last consumed food or liquid. i assume this is a thing.

i sat in my partitioned booth on a reclining chair with my heated blanket in my lap. a little girl in braids and scrubs walked by on the way to her own prep booth. we looked at each other as she passed, only knowing one common variable in our plans for the day. ben and i talked about the doctors, about the other patients, about the episode of buffy we'd watched the other night, about mystery science theater. i watched the clock tick past eight thirty, the scheduled time of my surgery. eventually the assisting RN came in and told me it was time to put on my hair net. ben gave me a kiss and a hug. we shared i loved yous. "i'll see you soon, okay," he said. i nod, uncertain. the little girl looked up with concern as i walked past her, then turned and asked her mother something i couldn't hear.

now i'll always wonder, i thought.

the nurse walked me down a long hallway with lots of windows i was careful to not look into directly. she repeated back from her walkie that we were headed to operating room 4. there were posters, wall murals with cartoon bears. i asked her if they had fewer patients today, because of the holiday. "about half," she said.

i wondered if i'd say anything strange as i was going under. the nurse laughed. "we always like that," she told me, in an affectionate way. we walked into the OR.


the table is narrow and they brace you in and strap you up from all sides. everyone talked, to me, to each other. pop music played softly in the background. the room is surprisingly cold. like a meat locker, i think. well, of course.

the nurse velcroed each leg into circulation wraps, to prevent clotting: "it's part of the spa program we have here," she joked. the wraps filled gradually, one side, then the other, drawing air in from the bottom, each compartment one after the next; then they'd deflate and vibrate and start again, like living things. i didn't like them, at first.

the anesthesiologist said she was starting my pain meds; she said that i should start to feel pretty good real soon. things soften and warm. the surgeon squeezed my shoulder and looked down at me, smiling. "you ready to do this?" everyone is my friend, suddenly, and i can appreciate why: i am putting my life in the hands of these gentle strangers. then i am simply grateful that they hadn't put the table lights up, yet. then the oxygen mask. then nothing.


the first thing i saw when i came around in recovery was my surgeon, lightly touching my arm and telling me the procedure was "textbook." everything went smoothly, my parathyroids were fine, the surrounding nerves were fine, and it hadn't been necessary to remove any additional tissue. he said i did extremely well. ben says it took about 4 and a half hours.

recovery rooms are not the happiest places. across the room a boy moaned and clung to his father. the man next to me wanted his wife and a coke. people kept saying that i seemed to be coming out of it well, and after twenty minutes or so they brought ben in so he could sit with me and spoon ice chips into my mouth while they still had me hooked up to the monitors.

whether or not i was 'coming out of it well,' everything from that first couple hours feels slurred and queasy. my throat hurt like photographs of a dead loved one. the RN laid a pan on my chest as she wheeled me to my room and said, "it doesn't look like you'll need this, but just in case." after they moved me to the bed, i looked at ben in earnest delirium and informed him, "you know this boogie is for real," because really, what else could i say? jamiroquai didn't quite bridge the connection for us, unfortunately, though ben may not have understood. my throat could barely hold the weight of my voice.

i was able to use the washroom by myself, but the rn or tech had to come in the first few times to unhook me from everything and spot me to the door. i did not remotely like the sensation of putting my arm down to push myself off the bed, that first time i stood, and not feeling like my arm could bear weight.

ben and i watched buffy and xena on netflix (i think) then fireworks over the harbor on television at midnight. i start out 2013 with cancer in a hospital room on narcotics. maybe things get better from here.


overnight my calcium levels weren't stable and we had to stay a second night at the hospital. yesterday around this time they'd just told me this and i was miserable, then nauseated, then nauseated and miserable with this horrible IV port still stuck into my left hand. the OR is arranged around the assumption that most patients are right handed, according to what i was told when i begged the woman who was prepping me to please put the port in my right hand so i could write in my journal that night if i was feeling up to it. i mean, i've come to terms over the last couple months with the fact that there's only so much you can do around the whole handedness issue with healthcare, and the last thing i'd want to do is throw my surgeon off his game because i'm laid out on his table backward, but man, us lefties sure get a raw deal, sometimes. i've had a little bit of cramping in my left hand since the port finally came out around 10:30 this morning, but i think i'll be able to write longhand again. world of difference between even the first two signatures i made on the release forms.

they kept feeding me supplements and checked my levels again around 5AM (six needle entries for bloodwork, one in my hand for bloodwork, three needle entries in my belly for anti-clotting meds, and two in my other hand from the IV: my new nickname would be "the human pin cushion." every time i'd turn away or close my eyes and try not to think about it, afraid i'd drop or puke or finally just explode into a world of needle intolerance. one of the entries bruised rather badly; there are gray stains butterflying inches out from my right elbow. lesson one from cancer: needles suck, but life goes on.)

all the internists came in the room before dawn to tell me i could go home. and tap my cheeks, and ask me if my lips felt numb, and peel off the plastic bandage over my neck (the most painful part of the experience besides the bruising from the breathing tube, which, like a lot of thyroidectomy patients, i assumed was actually from the incision, which hasn't hurt too badly, hmm.) you might be able to see the faint pink halo around the scar - that's from the bandage. i asked ben (he stayed by my bed both nights, updated facebook, called relatives and served as my voice while speaking was difficult) if i'd cried out while they were pulling off the bandage, and he said i didn't - he then wondered why the one doctor felt compelled to take it off when my surgeon had said to keep it on until tomorrow. i thought about that and said, "you know, i think i'm glad the doctor did it. because in front of them i had a little shame. if you or i had to do that tomorrow, there probably would have been screaming and trauma."

because really, enough with the screaming and trauma.

happy new year.


anonymousblack: (Default)
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