feast day

Feb. 14th, 2016 07:56 pm
anonymousblack: (rosewater tarnish)


the candle i decorated for my imbolc pledge did not get enough love on ritual night (i mean, it could be argued that i was largely the source of my own distraction, what with my salty pledge and setting fires with my mind and such) so it is presented here, far left. love it, please. that's the point. several layers of repurposed gift tissue torn up, tie dyed, and occasionally stamped around a jar covered with a layer of red glass paint.

today, probably for the first time, i had another magic worker perform a small service for me. i wrote out my petition last night and felt the deity tugging at me, wanting to ground her ritual in my own space, so i set up a spot for her on this little wall shelf i got for yule. immediately beneath that, almost a serendipitous aspect of my petition, we have:



i've been meaning to write about the blooming burning corazon piece since the beginning of the year. i'd ordered it a few weeks before my thyroidectomy, in part because something about the design reminded me of a thyroid and i thought, well, at least i can have an analog around the house. it arrived with an element of the design missing, which felt like a bad omen - just... trust me on that.

i went back and forth on whether or not i should complain. my inner american consumer was all, assert yourself! get all the tin wing-like leaves that you paid for! you deserve perfect! don't dare settle for anything less! at the very least, i worried that i should demand a partial refund (or have the vendor check to see if the missing piece was lying around somewhere in their warehouse), but in the end i didn't have the (ha, ha) heart for it.

deep down, it's always felt like the piece was meant to come to me broken. that it came into being for me, specifically, at that specific point in my life. it was where my own heart was on many levels. still, i felt self-conscious about the whole matter. the imperfect art, my lack of plucky american-go-for-it-aggression in not even attempting to correct that imperfection; then this lopsided thing that was supposed to be a comfort while i was in recovery from cancer treatment that, instead, made me feel guilty every time i looked at it. i spent the following three years positioning it to hide the missing element and contemplating some variety of surgical intervention.

then, on a bad day this january, my eyes fell on it and something whispered: hold the wound. i thought about the japanese discipline of kintsugi - repairing damaged ceramic pieces with gold leaf - and realized that i shouldn't be hiding the missing element or feeling any kind of shame about it. instead, i could emphasize that absence, almost celebrate it; use that lack in a prayerful way.

so i present to you: my traumatized heart, in all its poorly lit glory. three pheasant feathers replace the missing element.

anonymousblack: (sunflowers)
struggling.

according to a survivor friend, there's a good chance that with this latest round of bloodwork, my endocrinologist is simply doing what needs to be done to get clearance from my insurance for the super 'spensive PET scan.

but judy! you did a scan in november and it turned up nothing, you're saying. whelp, RAI scans can apparently miss a re-occurrence if it is very early. they can also miss some of your more esoteric metastasis. in this context, as with the vast majority of cancer-related contexts, "esoteric" is not in my favor. survivor friend is over her ears in esoteric thyroid cancer metastasis. she knows of what she speaks.

i am dealing with some depression, major healthcare burnout, as well as that thing that happens when you've been swept up for months in a Dramatic Life Happening and then, some of the dust clears, or at least you think some of the dust clears, revealing the huge mess of things you've left unattended for months on end and oh, god, the entropy, the fucking entropy. the unresolved. the unsaid. the spoiled milk in the refrigerator. the fear about something other than cancer killing me in my sleep. it might be refreshing, at least, to be afraid about something else? but! it is not.

i'll be talking about PET scans with my endocrinologist, you betcha, that and so much more, but for now? i'm taking a few days off.

i could really use some good thoughts and friendly notes. haiku, even. here is as good a place as any, should you not know my email address (or you keep ending up with my british namesake. she has to be getting some of my mail, considering how much i get of hers.)

anonymousblack: (painted lady)
the boil down: it isn't thyroid tissue, which means i won't need surgery at this point in time. however, she's still not sure what's going on. she has a theory, so i'll be getting more blood drawn in the near future. for the record, i know this is pretty damn good news but i'm still... cramping my way out of three months in crash position and suffering from severe qualifier fatigue, so my response is kind of muted right now. text below.

______________________________________________________
Subject: A secure message from your provider's office
Message: Lab/Pathology Results

Judith,

I apologize for the delay; results have been coming back slow this past month.

I did get the results of the pathology and TG levels. The good news is that of the 3 areas I sampled, the TG level came back very low. In addition, the pathology of the lymph node didn't show anything to suggest thyroid.

I have discussed your case with others in my group and 1 possibility is that you may have an antibody that is making the TG level falsely positive. This would explain why the level is just slightly elevated and why the previous scan was negative. There is a lab in California (USC) that specializes in these type of antibodies. I'd like to send a sample there for both a repeat TG level as well as some specific antibodies that I have in mind. We can draw it here in the office and send it out. Call/email my secretary to schedule a lab visit and I will be in touch when I get the results.
anonymousblack: (better days will come)
so that didn't go real great.

i'm sure a contributing factor was my mistaken understanding that this was going to be, like, walk in, low concern! flinch my way through some lidocaine injections, low concern! get this lymph node and this other spot poked a couple times, low concern! walk out, low concern! wait a week or two for a my unconcerning results. huzzah. see you next year. instead?

there's a thing.

a concerning thing.

in the left thyroid bed. that the in-house thyroid cancer specialist, consulted for a visual scan in an effort to pin down where my excess of TG might be coming from, pointed out to my endocrinologist. the in-house thyroid cancer specialist sure did not like the looks of that thing. nobody knew what the thing was. so we biopsied the thing. and damn, that one was deep. also, it hurt. more than the lymph node over my esophagus, which hurt plenty and (also) required two entries. audience members will be comforted to know that my involuntary clawing reflex is fully operational. good thing for the sonogram room table (and my leg) that i trimmed my nails last night.

what might the thing be? so, first, it probably isn't cancer. probably. now that i'm thinking about it. anyway, what it could be is thyroid tissue, which would also be bad. not because tissue automatically equals cancer, but because tissue can become cancer over time. plus we rushed the joint like we did in 2013 so there would not be so much as a single cell of thyroid tissue left anywhere, it was a whole big thing.

but, hey. welcome to cancer.

so. even if it is simply plain old thyroid tissue, i will need surgery again. and probably I131 treatment again. and yeah, i would've thought, as much as the next person, that a big old hunk of freshly-sprouted thyroid tissue in the left side of my neck would've shown up on my scan, but who knows.

so now i have a fourteen-punctured neck. there are many bandaids and much swelling. i'd post you a picture, but i'm having enough self-image issues as it is. the lidocaine has officially worn off and swallowing water makes me want to cry. let us not even talk about yawning. i had to cough a few minutes back and sounded like a fifth grader trying to get out of school on math test day. because holy shit, even just faking fifth grader cough? i saw sparks.

best part? results take seven to ten business days. [looks at calendar] so i might be looking at as much as two weeks before i hear anything back.
anonymousblack: (into the woods)
that took a lot less time than i was expecting.

the boil down: looks like i'm on the hook for a couple more biopsies (FNA = fine needle aspiration, delightful as it sounds), but mostly to play it safe. my scan was clean (which is good), bloodwork is still weird (which is not good, but sometimes inexplicable). details below if you're interested in the numbers. i think i need to go wilt in a corner and weep with either relief or the inevitably stilted nature of this relief. one of those.

____________________________________________________
Judith,

I've received all of your results.

The scan is negative, which means that there are no areas that took up the iodine during the stimulation.

The TG level stimulated 0.3 -> 5.2 which suggests that there may be some remaining tissue in the neck. This is most likely benign thyroid tissue residual from the surgery.

I'd like to do a FNA of 2 areas: the right thyroid bed, and a right-sided lymph node. Both of these areas were stable in size compared to the ultrasound done last year, so my level of concern is low. But I'd like to know exactly where that TG elevation is coming from so we know what we are following.

I'm going to have my personal assistant call you to set up the FNA. If you have any questions or would like to discuss over the phone please let me know.

anonymousblack: (453)
back through the door with the biohazard sign on the door. this time the doctor points to one of the high school basement-esque rooms in which hospitals always seem to keep this kind of equipment. i expect bulletin boards, desks, at least a chalkboard. i get rows of cabinets and the whole body scanner, which i’ve never been able to identify as a CT, PET or what, and i always forget to ask. i glance in, set my bag on the chair near the door and - very! important!! to remember should you ever need a procedure of this nature - excused myself to the restroom as the doctor was asking how recently i’d emptied my bladder. i mean, is it ever truly empty, is the thing. especially when i'm more anxious than usual. but his asking me this instantly made me like him that much more. the last time i did this the tech just strapped me into the machine and started the first scan without clarifying how long exactly i’d be in it. i was three days out of quarantine and still a little loopy, so i didn’t note it on his performance evaluation. i meant to make notes, which is part of what i’m doing now. so:

  • use the bathroom first.

  • use the bathroom first.

  • take a half dose of diphenhydramine about forty-five minutes before the scheduled appointment as it decreases the possibility of endless sneezing fits and increases the possibility of sleep. that forty-five minute window not only gives the drug time to kick in, it also gets people like me through the diuretic phase.

  • i’ve not had to change for this, so wear something loose-fitting and warm (though as i’ve only had these things done in february and november, i’m not sure that warmth would be as much of an issue in july.) shoes stayed on, too, so make sure they’re something good to lie down in.

  • if they're okay with it, it might have been helpful to have my eye bag. might. one of the machine’s elements gets awfully close to the face, multiple times. maybe a sleep mask? there’s a chance being able to feel the presence of the machine without being able to see it could freak me out.

  • metal they care about: belt buckles, long zippers, glasses, keys, phones. metal they don’t care about: the occasional grommet, my fixed hoop earrings, the permanent retainer in my lower jaw, the fly on my jeans.

  • take the blanket. take the blanket! not taking the blanket does not prove you are punkrock. it doesn’t impress anyone, either. it just makes the inquiring healthcare professional look at you with concern while possibly thinking, “why isn’t she taking the blanket? she seemed so sensible when she first came in.” for the record, i took the blanket, but i waffled on it and knew within fifteen seconds of lying down that this should not have even been a question. take the blanket. ask for the blanket. twenty minutes on a plastic slab while you try not to think too hard about those dark spots in scan examples in the big book of thyroid cancer is some slow, chilly business.

  • the smoked-plastic detachable arm guards are horrible, especially for boney elbows. put down some padding.

  • have no faith in the android for music-playing purposes. kaja the ipod would have been better. she wouldn't have been nuked by the machine.

  • try not to think about yawning. i know it’s hard. i don’t know if everyone is like this, but if i think about yawning, or sometimes even just type the word “yawning,” i yawn and things spiral from there.

  • [yawn]

    the thing about a reoccurrence is that while it is most likely to show up in the thyroid bed, it could actually happen almost anywhere in the body. twenty minutes for the head to pelvis overview scan, first. then approximately twelve minutes each for anterior/posterior and left/right details of the head and neck. standard protocol is your break for a drink of water after the first scan (don’t think that happened the first time, either) probably so you’re desperate enough to urinate again by the end of the next half hour and don’t want to linger too much longer on the hospital’s expensive specialized equipment. it’s a temptation, i understand. especially in the rooms where they have light boxes of palm trees on the ceiling. my room did not have light boxes of palm trees on the ceiling. my room kinda looked like it’d be hosting aa meeting later that afternoon, just needed someone to bring in the coffee carafe and doughnuts and turn up the lights.

    when i was little, i used to smooth out the orange afghan on the living room floor so it was perfectly flat, then roll myself into it and watch saturday morning cartoons. i found this type of self-moderated restriction immensely satisfying. instinctively, i haven’t entirely lost that, though it’s a different dynamic when somebody else is fastening you in. not self-regulated, i mean. you can’t just roll out when you’re ready for some honeycomb, i mean. it’s vinyl canvas with velcro fasteners, where i could see it. i couldn’t see what he did with my feet because of the wedge under my knees, but they were held in place as well.

    “okay,” said the doctor, “are you—“ he thinks. “as comfortable as can be expected?”

    “sure,” tell him. he glances me over, adjusts the position of my head, and tucks the blanket over my shoulder.

    “okay. you hold still. i’ll be in and out, but will see you in twenty minutes.”

    the machine grumbles to itself while it works, knocking and whirring and occasionally vibrating. every now and again i’d flicker my eyes open and discover the element was either over my face when it hadn’t been or not over my face any longer when it had been.

    i tried to zone myself out with dr. jeffrey thompson’s meditative ocean, a staple of my entrainment collection, but the android wasn’t having it. i thought it was just the volume being weird, turns out it paused itself as soon as it left my hands. so after my water i put on the lotus flower album and that was fine, if a little quieter than i would’ve liked. i couldn’t sleep, but that’s not remotely a surprise. i can’t sleep under normal circumstances. i’ve had friends complain at me about insomnia and how unimaginably intolerable they find it and how now they understand exactly what it’s been like for me all these years and i break a sweat with the effort of not pounding my head on the nearest table because no, friend with 36 hours of temporary sleep trouble, while i do feel compassion for your plight, i do not believe you have any real understanding of what chronic sleep issues are like remotely. okay, creatives tend to be night owls and sometimes we get so wrapped up in a project that we forget to do things like sleep or eat, but that's the disney version. at the root of my insomnia is an overarching hyper-vigilance issue that’s turned sleepless nights into razors for weeks at a stretch, especially when i'm scared i might have cancer.

    i might need to figure out new headphones. these sony earbuds, i’ve had them since iowa and the left speaker has been increasingly unenthusiastic about doing its job. i just hope i can find one of the ones you tuck into the ear as opposed to jamming some kind of huge foam intermediary into the canal because one of my ears has an internal anomaly that make such designs incredibly uncomfortable. and without going into a lot of icky detail? i have a kind of dave barry situation going on around wax. i did a preliminary search for options earlier and was promptly overwhelmed. they make earbuds out of wood, now?! fancy. like, anti-social at an ex's european insurance company high end restaurant holiday party fancy. like maybe you have to tip in the bathroom fancy. like i would annihilate them in a fortnight fancy. recommendations welcome.

    after the scans are finished, they send me out to the waiting room while their team does a basic evaluation of the images to see if any more are needed; nope. as hard as i’ve been working to discipline myself into not to reading anything, anything, positive or negative, into a clinician’s mannerisms or reactions around scans or sonograms or whathaveyou, i have a brief burst of hope when the doctor comes into the waiting room and salutes. “see you in three or four years.”

    ben says, “no offense, but we’re shooting for longer than that.”

    i thank the doctor and think i’ll take it.


    *

    friday i went back to my endocrinologist’s office for another lesson in “why i should not try to be punkrock around medical procedures.” see, that cute technician? he did not bruise my elbow with monday’s draw. this is all kinds of impressive to me. i’m pale and bruise pretty easy, so my arm is usually a mess when i come back from labcorp. it looked so nice there that i decided i’d have him draw from the right arm again, even if it hurt a little? but, see, i only got the one vein and damn it hurt and damn if it didn’t end up bruised after our one attempt to draw from it again. it’s a small bruise, at least. he decided to use a smaller needle assembly and draw from my left arm. slow going, which has happened before; i need to drink more water on blood-draw mornings, i think, but there’s always a balancing act between my bladder’s capacity of a thimble and easy blood draws.

    at some point i started being able to look at vials of my own blood without that unpleasant prickly sensation at the top of my head. which is good, because it’s always three, four vials these days instead of one or two and my eyes tend to be magnetized right at them especially when i'm not in the mood for the hot head prickles. it’s always darker than i’m expecting. this time, i suspect because of the small needle, it was also a little frothy. i wished the cute technician a good holiday and he jokingly reminded me i didn’t need to come back on saturday. we laughed about that and i walked out of the lab with both elbows sore. the majority of me, i mean, walked out of the lab. some of my details stayed back in labeled glass vials, warming them with my residual heat.

    of course it didn’t exactly occur to me until yesterday afternoon that the holiday means it will take longer than usual to hear back on the blood work. apparently, the only lab in the united states that tests for thyroglobulin is in california. so! i’ve not yet made it to california, but roughly a quart of my blood has. what the holiday means is instead of waiting a week and a half on my results, it’ll probably be two and a half weeks. if anything impressive showed up on the scan (we’re hoping no) my endo would likely get back to me sooner. like maybe yesterday, she might have gotten back to me. unless something did turn up but she's waiting to see the numbers on it. or maybe like she took friday off so she could make thanksgiving turkey hand prints with her two kids. but here i go again, violating result-waiting protocol. we'll leave it at: otherwise.

    i drove home, smudged, anointed with florida water, and finished up my week with a hot saltwater bath that smelled like crying.

    we'll see.

    anonymousblack: ([tarkovskiy] river)
    sunday morning i dreamed i came home from my first trip to the hospital and held up a script for ben to see.

    “look, ben! my endocrinologist gave me a prescription for medicinal marijuana to help me manage my escalated thyroid symptoms!”

    “that’s great,” dream ben responded.

    “look, ben!” i pulled out a second script. “my endocrinologist gave you a prescription for medicinal marijuana to help you manage my escalated thyroid symptoms!”

    *
    monday i woke while it was still dark, queasy, with a headache. i took my synthroid and then a pee test, visualizing a veritable old-growth forest’s worth of pregnancy waivers waiting for me at the endocrinologist’s office. weird things go through your brain while you sit on the edge of the bathtub not sure what you’ll do if the extremely unexpected has occurred. no second line, so i tossed the test and went back to bed. “guess who’s not pregnant,” i said to ben.

    “me,” ben answered, spooning up behind me.

    “that is also correct,” i said, and we fell back asleep.

    hours later, i drove to GBMC. got there early. got blood drawn from my arm, got my first injection in the butt. the technician was cute and friendly; it was only painfully awkward in accordance with the literal interpretations of pain and awkwardness. i’ve nearly decided that i’ll get a dramatic black rose tattooed inside my right elbow because i am so sick of looking at needle bruises, but it’s possible this might not be the best point at which for me to make such decisions. after my shortest trip ever into that office, i drove around to the main hospital to pick up a parking pass. an old woman in a wheelchair on the other side of the glass doors nodded and then looked past me while i realized the last time i’d been in this part of the complex, i’d been in a wheelchair, too, squinting into the winter light for ben’s car. that felt kind of weird. crossing your own ghost usually is.

    tuesday i was still early, but by a little less. there were no spaces in the lot i usually use for the endocrinologist, and the valet lot across the way had lots of spaces, as well as several posted signs warning “you patients even think about it and we’ll tow your ass.” figuring my ass had a hard enough day ahead of it, i tried to find somewhere else to park. and could not find anywhere else to park. and really could not find anywhere else to park. all over the campus, i drove, and could not find anywhere else to park.

    i would tell you more about this phase of yesterday, as i do feel i learned some important things about myself, but they essentially boil down to “certain varieties of driving-related stress transform me into my father cursing endlessly at the computer a hell of a lot faster than i’d like to admit” and i am not proud. when i tearfully gave up and drove back to my usual lot, fingers crossed, someone was pulling out of the second space available to me and i don’t know who or where they are, but i love them. truly. madly. deeply. my favorite part? as i was jogging toward the physician’s pavilion, i came across a big (but apparently not big enough) sign posted inside the entryway inviting anyone who couldn’t find parking in that lot to use the valet lot across the way. silly me, trusting what the signs said in the actual lot.

    the second thyrogen shot needs to be given 24 hours after the first, so same time, different cheek. same technician, too, but i feel like i disappointed him somehow. i don’t know. get there late, little flustered, stumbling into stuff, just… yeah. i’m sad because i really thought we had something special. i’ll see him again friday, let you know how that goes.

    then i left the hospital and over the course of my three mile drive home develop sudden and intense concern regarding the continuing operational safety of my automobile. like, the brake pedal pushes back on me a little. like i have to press significantly harder on the brake to get the car to stop. like sometimes the pedal vibrates a little in a way that makes me feel like my sternum’s gone hollow. so, i take surface roads home, keep my hand hovered over the parking brake, and drive agonizingly slow. i make it all the way home safely, but my hands shake and TMJ screams for hours afterward. ben decides it’s safe enough to drive again, but only to the mechanic. he offers to take it this morning and i let him, because: cancer. $420 (so far) to fix. praise be to the red cup that this didn’t go down on the beltway.

    last night ben’s mother called and asked how i was feeling. “well, adverse reactions include headache and nausea. yesterday, i had a headache. today, i’m trying nausea.” she wondered if i’d taken anything to manage that, like ginger tea. “yes,” i said, glancing furtively at my stash box. “ginger tea.”

    today was my first day in radiology. ben brought me in, as had been our plan even before my car went rogue. parking was less of an issue and this time we even went into the right part of the building. again, ghosts: last time i’d walked through this lot, it was after my first whole body scan and i’d stopped just outside the car door to gather handfuls of freshly fallen sweet gum seed pods because of course i did. folk name? witches burr. magical uses? protection and prosperity. personal connotations? i like to keep burrs, cactus bones, and thorns about to remind myself i can be “prickly” when i need to be. plus look at the things.

    the administrator invites us to her desk. she finishes my name for me, and picks up an alarming stack of papers with my name at the top of every page. “they sent me a book about you,” she informs me, turning it out for us to see, and asks for my ID and insurance cards. she scans every sheet in the stack and gives us a complimentary parking pass. which i did not even know was a thing! but now i have one! and it does not have an expiration date! which is good because my current plan is to use the parking pass i bought on monday for the rest of the week and then not need to come back to the hospital until next year, for my annual diagnosis anniversary appointment, because oh my god. i mean, i might make an exception for the cute technician. like if he wants to take me for lunch to the cafeteria, which the cafeteria there is pretty good, even if the one time i went it was on a half-service holiday and i pretty much only got a side dish of steamed vegetables to push around on my plate in misery because i’d just been told they couldn’t release me until my calcium levels stabilized because plummeting calcium levels can mean hypoparathyroidism, the end result of which i assume to be severe injury or death, bad muscle cramps at least, which i did not want. so: over steamed vegetables i forced myself to accept i'd be staying at the hospital another night. even as unbelievably incredibly and amazingly friendly as everyone in that hospital has always been, i really just wanted to take my big bottle of hydrocodone and go home. at the very least get the fucking i.v. needles out of my writing hand.

    the radiology doctor retrieves me from the waiting room and walks with me back into the hall with biohazard signs on every door. “hey,” he says, indicating my eurosport messenger bag. “i have that same bag.”

    “got it for christmas,” i tell him. “a lot of research went into my choice of this bag,”

    he nods. “you’d fit right in here,” and opens the door.

    he invites me to have a seat in the same curtained work area i had on RAI day in 2013 and hands me the first pregnancy waiver of the week. i sign it and he adds it to my book from administration. then he explains the day’s activities. i am to receive an imaging dose of radioactive iodine for my scan tomorrow. the preparation, I-123, is significantly less volatile than the I-131 i had in 2013. additionally, the dosages, 75mci for treatment vs. 1.2mci for imaging, mean that i will not have to observe quarantine precautions at all. “well, except maybe don’t hug a pregnant woman for hours at a stretch,” he laughs.

    the bottle for my pills is covered with biohazard warnings and my name. the doctor sets water and a plastic pill cup on the desk in front of me. “there are seven pills,” he explains. “so unless you’d like to try to swallow them all at once, which i do not recommend, what i’ll do is put a single pill in your cup, you use the cup to take the pill without touching it, and have a sip of water while i set you up with your next pill.” so, then, seven radioactive binge shots it is. the capsules are green and white and in two layers of glass. the big book of thyroid cancer says they would have been exposed within the last 30 hours. i wonder where they do that, i think, then decide maybe i don't need to know that.

    "are you going to run a geiger counter over me," i ask after the first pill. "last time they ran a geiger counter over me." they also gave me a letter, explaining to the NSA what to do if they intercepted me on the subway. then they chased me out the back door. i did not gather sweet gum seed pods that day. in fact, ben had really convince me to sit with him in the front passenger seat of his car and we're talking a volkswagen beetle, here, folks, not a lot of leg room in the back for the taller ladies. anyway, that was his winning argument, in the end. it's a beetle, judy, and it's less than four miles. it really does not make that much difference if you sit in the front or in the back.

    "nah, that's only for special occasions."

    "okay," i shrug, a little disappointed. "but you might want to check that out."

    one of the other doctors walks over to watch and chat. true to my not-quite-gen-x definitely-not-millennial priorities, my primary concern about the next day involves whether or not it's cool for me to wear headphones. maybe it might be? maybe. ben thinks i should put the lotus flower CD on my android instead of trying to figure out where my most recent (1999?) discman got to. okay, benjamin, if you want to go all whippersnapper on me.

    “wild time in radiology,” i say, after throwing back my fifth pill.

    *

    tomorrow they’re scanning me. it’s probably not the most legible request most of you have had to this point, but pray for lack of uptake.
    anonymousblack: (that time again)
    to be entirely candid with you, my livejournal followers, i am getting rather tired of showing total strangers my butt.

    anonymousblack: (YOU'RE ALL MAD)
    basically i'm setting up a lean-to on the GBMC campus next week. the week's events begin with $4000 worth of thyrogen shot into my ass. what can i say? my heart's all aflutter, though that might technically be palpitations.

    anonymousblack: ([ben] strap)
    according to my doctor, our missing link right now is the thyrotropin alfa manufacturer - burgeoning though my cancer may be, and everybody knows somebody, heck, you know me - there's just not an overwhelming marketplace call for a product utilized for tissue imaging and ablation in thyroid cancer patients. there might only be the one. like there's only one lab in our fine nation that even tests for my troubling protein, which is why it can take more than a week to get results.

    doctor's office sent a fax with my numbers their way on the 19th; called yesterday to ask what's up; "what fax now," manufacturer wanted to know, possibly rushing to crack the basement windows and fan the clustered plumes of smoke in that direction with their tab books (sometimes i feel like 'sorry, sorry, so totally stoned' would at least be more interesting as an excuse than the old familiar agony of 'there are very many a lot of you who need so very many things and only a couple of us to provide them'), so doctor's office sent it again yesterday. good thing i checked in.

    mostly the check-in was to ask: my research has provided me with a solid grasp of my worst case scenarios (surgical intervention! chemo! death!) could you maybe give me a sense of better or at least neutral outcomes? it sounds like the best outcome is my scans are clean and i just have some unexplained elevation in my TG levels. which: it’s mysterious, nobody knows why it happens, it’s not like i started hanging out with the wrong crowd of lentils or using a bad news laundry detergent.

    in that case, we watch. get my blood drawn a little more frequently and investigate further if my TG level continues to go up. the (happily) large window between that and surgery or chemo includes even more aggressive monitoring and, if the cancer moved into the thyroid bed or . . . somewhere (anywhere! maybe not my hair!), further treatment with i-131, which - i’ve heard horror stories about subsequent dosages and the more of that shit you have, the greater your risk of permanently fucking up your salivary glands, but, still. preferable to chemo or surgery. quite preferable to death.

    want a fun waiting room game? invent new treatments and assistance products for thyriod cancer patients. do this by finding some clever way of inserting the affix "thyro" into a previously established or made up word. synthyroid. thyrogen. thyroidectomy.

    mythyro: getting hounded by someone who heard about your little condition, found some nice pseudoscience on the internets (“stop the thyroid madness” is quite an oxymoron for us thyca patients) and is now vocally insistent you try their sure-fire cure of insufflating turmeric and switching up your meds to desiccated porcine hormone? skip the futile attempts to explain how mammal-based hormone offers not only thoroughly unstable dosages but the very protein you are strategically using lab-made hormone to suppress because, like, you'd actually rather avoid getting cancer again. plus, you think factory farming is horrible? let me repeat that: desiccated. porcine. hormone. we ain’t talking some prosaic little grotto where the adorable pigs are bred with adorable spigots on their throats that they can twist open when they are feeling most abundant with hormone in order to deposit their happy gifts into sweet quilted baskets they then leave on the thyroid hormone farmer’s doorstep. we are pretty much talking stuff that makes this american life correspondents barf. i love my lab-created hormones and am grateful they work for me. but, let's face it. chances are, you aren’t going to be able to explain the complexities of your treatment to the satisfaction of this self-proclaimed endocrinologist friend whose other internet certifications include “gluten = satan” and “flu shots make your eyeballs explode” (got mine yesterday, nope), so why not get yourself the mythyro (patent pending), which is not so much user-friendly explanatory literature as it is a cudgel, with which you can use to beat your helpful adviser into blissful silence. or, if you’re a pacifist, wave it threateningly and yell like that guy who walks by the apartment complex at three in the morning. should clear up the issue faster than turmeric! [snort]

    thyrogeddon: in the weeks leading up to my thyroidectomy, i instituted a “countdown to thyrogeddon” on facebook, because when something is terrifying, what else are you going to do but make stupid jokes about it?

    thyroscrub: thinking twice (maybe three or four times) about that teal, purple, and pink-ribboned butterfly cancer memorial tattoo you got a couple years back, drunk on the promise of a 99% five-year survival rate and the idea of your cancer receding into the cave of defeated cancers, never to be heard from again, like the good cancer it’s supposed to be? realizing that your actual cancer has left more than sufficient markings all over your person and lifestyle? feeling the ironic burn of staring at the damn thing as you wait for the folks at the radiology clinic to roll over another lead-lined canister of radioactive treats? thyroscrub won’t actually remove that needle-injected fucker for you, only professionally administered lasers can (safely) do that, but buy our product anyway! that way you can proudly display your submission to survivor community herd of instinct plus we could use the cash.

    thyrola: ain’t no cola like thyrola. mmm, thyrola!

    thyroach: infinitely helpful in awaiting the results of your various ‘do i have cancer again’ injections, extractions, and two-day scans. tab books not included.


    eagerly anticipating your creations.
    anonymousblack: ([magritte] mentor)
    have you ever been on a roller coaster with one of these? there's one at great adventure in new jersey. they strap you in and roll you out onto the tracks. then the train stops and you just wait. staring at that abrupt ninety-degree difference between where you are and where you will soon be. then there's this sound. like a rubber band on jupiter's headgear snapping. the boy teenagers behind you start counting, the girl teenagers behind you start howling and you can't stand it can't stand it: until all at once you explode forward, then skyward, at 128 miles an hour. straight up and straight down. it's too much to process, that first time. my first memory of kingda ka is comprised entirely of stills. green track and blue sky. green track and parking lot pavement. the hems of my military surplus pants up over my knees. why subject yourself to that but goddamn is it cathartic. to have an event occur that is equivalent to or greater than your advance terror of it. to scream and scream and scream. then, to look at your partner, giddy with cascades of endorphin as the train rolls back into the station. you pull your pant legs back down to your ankles, dislodge the smashed flies from your t-shirt, get out of the train and like that, it's done. no waiting a week to hear back on if you made it. no increasingly scary followup needles.

    there's a reason i turn to roller coasters in times of heightened anxiety.

    so. angst and emotional backsliding. i don't want to have cancer again. i really don't want to have cancer again. could that be a more forgone conclusion? it's like, the hyperbolic example you throw at friends wondering about the job you left or the dick ex you curbed. do you want it back? about as much as i'd want cancer. turns out, though, that cancer tops the charts in the "things i don't want back" hit parade.

    thinking about that, maybe.

    thinking about that, maybe it's a good thing that isn't an option. i'm really not at my most evolved, right now, and anyway that mall bookstore chain no longer exists.

    so, what. is this residue? unsorted business? the idea that i powered through treatment, didn't cope with my feelings, ignored the pain is, on one level, absurd. i do not bury emotional things. if anything, i strip down, slather myself up with honey and roll around in emotional things. that's how you get the good writing, you know. artistic edgeplay. write until it hurts and then keep the fuck going. though maybe the first time with adult supervision and do not combine alcohol, utility blades, and that first siouxsie and the banshees album until you've been officially certified by the board.

    good creative writing instructors will tell you that writers needn't be miserable when they write. they promote self-care and combating addiction as a crucial aspect of a vibrant and sustainable craft, as they should. because yes, that's a version of reality, and maybe you are one of the lucky ones who fits into that. long-time creative writers will tell you that it is a spectrum and depending on the nature of your creations. depending on the nature of your creations. right? so remember how that big monologue i did a while back opens with the line, "i named our dead child iris and buried her in white"? ain't all puppies and sunflowers over here, folks. i've learned appropriate deep diving techniques and so far have always come back up, but have also acquired some permanent scars and stains over the years, and learned some things about humanity - on a macro and a micro level - that, gosh golly, sometimes i'd rather not know.

    at the same time, i know there's some truth to the idea that i jettisoned key concerns in coping with my diagnosis. occasionally with no intention of picking them up again later, which is uncharacteristic, but, what, you think i had any clue what i was doing, where it was going, or what was going to come back on me with blood-hungry teeth in triplicate? because i didn't. i was scared and confused and working overtime just trying to figure out what i was going to do about my body.

    and that's the thing. sometimes the honey slathering actually happens because there's another issue - or maybe an entire class of issues - that i'm working to avoid. and there was a lot of that, around the time of my diagnosis. i'd come to several crisis points involving matters like my living situation, failing relationships, and my freelance work. so much went to shit in my four months of diagnostic limbo that it was easy to pick and choose, because there was no way i was going to be able to deal with all of it by the time i started treatment. so: i did some slashing and burning, some of it regrettable. of course i didn't deal with that at the time, because, shortly after my surgery, college bff completed her in-progress cancer ditch. several months later, when i demonstrated little enthusiasm for her invitation to reinvigorate our friendship by pretending she hadn't done that, she blamed me for abandoning her. the best part about that drama was how there was always another little addendum springing up when my horrible, horrible jettisoned concerns started scratching at the bedroom door again.

    look. i'm saying this as much for myself as for anyone because i've definitely been on both sides of this equation: if you were an asshole to a friend in crisis, own it. say you are sorry. skip the guilt-trippy vaguebooking. just tell your friend you regret hurting them, want to fix it, and do appropriate follow-through.

    "appropriate follow-through" means being attentive to your friend and respecting who they are and what they need now. if you ditched, your friend has undergone significant changes since the last time you were in communication. some of that might involve their perception of your relationship. when you're going through a crisis, things are going to come up about your friends because things come up about every fucking thing you can imagine. dietary choices. the city you live in. lost loves. current loves. how you are handling your killing secrets. the color of your automobile. and, of course, friends. so if a close friends withdraws during that crisis, things are going to come up about them, specifically. inevitable progressions from the horror of i cannot survive without this person in my life, you know? because turns out maybe i can.

    if your friend needs time, accept that. don't force it. don't demand time frames. don't comment on how you are giving them the time they need, because that is passive-aggressive bullshit. if you hadn't been an asshole, your friend wouldn't need time. just accept that you fucked up, your friendship isn't easily going to be as it was, and your friend might not be able to go back. there is a significant difference between attending to somebody's needs and pressuring them into behaving the way you want them to behave. a lot of the time that difference can be observed in how much and how loudly the injuring party is describing their own a) generosity and/or b) pain.

    the other side of everything i just said is that when you walk away from certain relationships, you do it with everything inside of you screaming not to do it. except time moves on, even within the agonizing cycle of that regret, rat-a-tat-tat, but maybe if i, but possibly if i, but i could always, except you could not. you've reorganized the universe to account for this awful reality of a friend you held dear who didn't need or want you as much as you needed or wanted them. what it feels like to be crisis-ditched is: this person gave up on me because i wasn't worth facing the fear they have around my issue. they did not value me over that expense. it could mean the two of you were not sharing the same relationship. if things weren't working regardless, if there were signs of pending failure regardless, it's not only unfair to put the ditched party in the place of initiating a reconciliation, it risks returning you both back into that floundering trajectory.

    deciding that initial approach is best left to the friend you were an asshole to is really not a viable option, either. nope. any translation of "i decided you didn't want my friendship anymore" is still pure asshole. you're going to have to be vulnerable. you're going to have to risk rejection. if you aren't willing to do that, you might not honestly want that friend back in your life as much as their amenities. that's what all the therapists keep telling me, anyway, as i prepare to never ever ever publish that horse-stunning seven volume set of 'vortex letters that should not exist but yes they do oh my god yes they do.'

    scratch, scratch, scratch.

    maybe with big trauma like cancer, there are certain processes that are going to unfold on their own time frame. regardless of how long it's been. regardless of how you've handled earlier stages. the threat of re-occurrence is distinct from an initial diagnosis. we come to each emotion independent of all prior. something in me keeps forgetting that.

    anonymousblack: ([tarkovskiy] hari bleeding)
    blood work results: thyroglobulin does not equal zero. (translation: fuuuuuuuuuuuck.)

    terror and needles and scans, oh my.

    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?
    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.

    POINT SET AND MATCH ANONYMOUSBLACK
    MY PRIZE IS CRYING



    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.)

    on a dime

    Sep. 4th, 2013 03:53 am
    anonymousblack: (did you think you were here alone?)
    here are the lists: of accomplishments, of rewards. of loss, of failures, of random disappointments. of calories burned, of miles amassed. of cigarettes avoided. of weeks in gestation. in this age a thing is not meaningful to us unless it can be quantified, visually demonstrated as progress, made into a brass plaque we can mount on our facebook wall. we'll embed it in the feed of even our most casual acquaintances--sometimes near-strangers who hold extremist philosophies we might find shocking, should we ever actually stumble onto the profile page of these people we sometimes spend entire days entertaining with links.

    perhaps, then, this is my problem: a lack of brass plaques. i cannot quantify my accomplishments, or, again, maybe the problem is that you can't. i won't be reporting to facebook, livejournal, twitter and linkedin how many inches i've shed, how many ounces i dropped to regain with morning's first intake of breath (or so it might seem.) i get through each day, in spite of the ever-bright slash at my throat. cancer can do that: it can make things impossible to quantify. so i ran my paces, so i dropped my hip, so i pushed out my ribcage without involving my shoulders. so i made it through another day without retail therapy, but shredded my lip bloody negotiating the temptation. i wake up before dawn and take my pill. just like that, i just go on.

    how's my health? i don't know. just as the doctor wouldn't use the word 'cancer' in my diagnosis call, none of the doctors dared to use the word 'cured' or even 'remission' in the months since. it's risky arithmetic. today i have questionable moles. i'm stalling on a mammogram. maybe this is cancer. today i have low iron. maybe that is cancer. can i have a facebook app to publicly quantify how the trauma still distorts my logic? can you hear the gaping roar of chaos behind the clicking of my fingers? no, because you can't even hear my fingers clicking. how strange.

    every time ben leaves the apartment, i think: he'll die. every time i walk down the stairs to open the mailbox, i think: i'll die. my parents contract a respiratory virus; it scrapes their voices hollow over the duration of a 40 minute phone call, i think: they'll die, they'll die, they'll die. the stray cat who greets us on the complex stairs goes missing for three days, guess what i think? i'm at ground zero of a trauma bomb, but it's hardly foreign territory. again people draw concentric circles around me, partition me off, protect themselves from my sadness, my terror, my radiation. again people tell me: this is for my own good.

    *
    trigger warning: describes accident, wife arriving at accident scene. )

    i leaned forward and bit into his shirt, tears and spit already mixing
    i sucked as hard as i could, denting the roof of my mouth with the weave of the fabric
    tasting detergent, tasting the memory of his skin, oh god
    oh god
    oh, god.
    anonymousblack: ([tarkovskiy] the heart)
    last night i set up the turntable and broke the seal on voice of eye's "substantia innominata" 10" (i've had it, now, for three years and never been able to listen to the vinyl.)

    i smudged the apartment with an old wand of white sage, needing to relight near the kitchen sink (where i'd sat on the floor, nauseated, in a cold sweat, a few hours earlier), over the bed (where i've spent many muddled and dissatisfied hours), a few lingering unpacked cluttered spots in the study, and, of course, the bathroom.

    i only walked through once. if i had more energy, i would have circled counter-clockwise three times, then walked through clockwise with sweetgrass, but i figure i can do another pass tonight; then finish out the triad and walk my sweetgrass tomorrow while ben is still at work, tomorrow. this has been a month-long convalescence, after all. i can't transform all that stale energy at once.

    after my smudge last night, i turned out the single light in the living room and sat in the couch, listening to the record in the dark. with the radioactive iodine still running through my system most of my bodily fluids are probably still mildly contaminated, so i did what i could to keep the tears in check.

    please tell me spirit did not give me cancer so i'd finally get around to listening to my record collection.
    anonymousblack: (painted lady)
    it's strange to wake up surrounded by internists.

    home

    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: (desparation)
    i know that things don't always work out. i know that schedules can't always be cleared, the call doesn't go through, we don't hear the bell, we don't get the email in time. i know that a mistake is sometimes just a mistake, a previous commitment just a commitment made previously: nothing indicative of subconscious intent. i know, god i know, that sometimes the money just isn't there. but when you boil it down, evaluate the core of it, the meat of the matter. what is going to jump into your mind in that sort of distilling crisis, screeching brakes, test results, slipping in the shower? what will stick with you, count in your ranks, bring you regret in those last gray years?

    what's more important to you, as far as i am concerned: the opportunity or the obstacle?

    some of my relationship are long overdue for this assessment, i guess. i apologize in advance for any inconvenience it may cause: but please, bear in mind that your response will intrinsically inform how i proceed with you, going forward.

    or, at least, it really should.


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