March 30, 2012

i got out of bed today.

are you giving me the slow clap? well, speed that shit up. i feel like i deserve some real applause for dragging myself from my comfortable nest, making myself a cup of green tea (it helps detox, didn’t you know), shuffling into my office/infusion station and hooking myself up to an iv. this morning was the most difficult one so far. after i started my antibiotic drip, i gave up on being out of bed. i wheeled my friend (my grandma used to call her walker her friend, so i’m calling my iv pole my friend) back into the bedroom and hid under the covers. i set an alarm so that i wouldn’t oversleep the iv and end up with a tube full of blood. i writhed around for a while and woke up to a perfectly timed alarm. then, i writhed around some more.

it’s completely possible that my previous feelings of “this isn’t so bad” were because i was doing it wrong. in the last year, i’ve started to have some considerable problems with numbers. at first it was just switching them around a bit but the progression of my numbers issue was strange and significant. on many occasions now, i’ve read the clock wrong. this could seem like an understandable mistake if i were four-years-old and it was an analog clock. sadly, i misread digital clocks as well. i’m never an exact hour off the mark either. i’ve thought it was 7:12 when it was 8:40. i’ve set alarms for appointments and meetings that were after the actual meeting time. my number jumble is the only explanation i can come up with for how i ended up giving myself only one infusion of merepenem a day instead of two. though i looked at the written instructions at least 20 times, i saw the number two as one. now that i’ve stepped it up, i feel worse.

how to wash your long hair without getting your body wet. otherwise known as "the toad bath."

the lactated ringer’s, which are kind of like bags of saline with less sodium and added electrolytes, bring me a lot of relief. they help ease the migraines, rehydrate this body that can’t seem to retain any liquids and help my muscles to unwind a bit. there aren’t a whole lot of things that i have uncovered that actually make me feel better. i bought a heated foot bath with bubbles that are supposed to massage my feets (that was intentional). i haven’t taken it for a test drive yet, but i thought that it might help with relaxation and detoxification. i’m dry brushing my skin to help remove dead cells and toxins. because my central catheter insertion sites haven’t healed yet, i’m not able to do things that stretch my right shoulder, which puts a real damper on my ability to work out the knots in my muscles. i’m supporting my body the best that i can, but… this is painful and it’s just the beginning.

squirming around in bed, i was wishing for an acupuncturist/massage therapist who could come to my house every day, lay their healing hands on my aching body and feed me grapes. then the image of hedonismbot from futurama popped into my head. grapes aside, my desires aren’t hedonistic, but they’re also not realistic. i need to find some practical self-care that can make a dent in the pain i’m experiencing.

my fios is out for the second time in two days, which means that for the moment, i am without the internets. so in the meantime, i’m going to hand draw you a picture of myself bathing. don’t mind the stick figure obscenity.


i feel frustrated, trapped in my body, unable to do the things that foster my self-worth. i come with a newly formed cloud of unspecified anger. it’s hard to need help, to ask for it, to accept it. there are times where these feelings of inability overwhelm me. these are the feelings that i don’t want to write about, not publicly anyway, but they’re some of the most honest things i can share. this is part of the reality of undergoing serious medical treatments. i imagine that almost everyone who has sat where i’m sitting, who has found herself sick for extended periods and feeling useless, can relate to this. the saddest part is, i feel ashamed that i even feel this way. it’s like i think i should be above this, more evolved, more emotionally equipped to handle what i’m going through. this is a human response and yet i seem to want to be more than human.

sometimes i forget that i’m not the only person going through this process. i am not alone in this boat. i’m not the only one who is frustrated and tired, who wonders how this is all going to work. what’s logical isn’t always rational, and there are moments, having taken out my fear, anger, sadness on someone else that i want to apologize, but my old patterns resurface and kind words can’t leave my lips. alone in the kitchen today, i threw around some things, mostly garbage (at least i no longer lack the control to throw things of value. i wanted to smash some plates). immediately after chucking some paper towels angrily into the trash and smacking a knife off the counter onto the floor, my right shoulder seared with pain. my slowly healing, insertion sites throbbed. there’s not a physical outlet for this. when i’m angry, i clean. i race from counter to counter, picking up, wiping down, folding blankets, filing papers. i can’t move the coffee table to vacuum. hell, i can’t even get the vacuum into the living room. before i got sick, years and years ago, i used to go for a run, kick a soccer ball against a wall, land punches on a body bag. i played piano when i was sad. i drove to the river and threw things in, smoked cigarettes and wrote bad poetry. there’s only one of those options still available to me.

i don’t know where to put these feelings.

i went to sit outside on the porch. the sky is a flat grey, rain somewhere in the distance, and i stared out at the naked tree branches spanning the woods behind my house. scattered here and there are splotches of green buds, flowers beginning to blossom on the old tulip trees, life sprouting up from winter sleep. looking at spring creeping in, i felt almost heartbroken. during the sweetest times of this year, i’ll be sick. i’ve spent countless summers sick, laying in bed, watching movies on the couch. i’ve watched seasons roll by from my window, not well enough to be outside. but all of those times, i thought maybe there’d be a break in my clouds, that tomorrow would bring strength and relief from my pain, and that i’d be able to push through the front door and sit out in the sun. mind you, i’ve been allergic to the sun since 2000 and can’t go out in the summer without a giant hat and a vat of 100 spf sunblock, but i’ve still had the hope that it would happen. right now, in this particular moment, i’m scared of what it will be like to be here, knowing that for a few months at least, i’ll be the window watcher.

i assumed i’d be able to spend some of my weekdays down in brooklyn, that i could have friends stop by after work to drink tea and shoot the shit with me, but after one week of infusing, of toting my iv pole from room-to-room, that seems too complicated. i can’t picture packing up the car with the dogs and the two baby gates we need to keep them corralled at my brother’s apartment, their food and toys, my meds, my iv pole, my sterile kit and infusion drugs, my clothes, my hurting body and leave my house for just a couple of days. that feels like a herculean effort that i don’t have the stamina to carry out. this disappointment renders me fearful that my months of treatment will consist of weekend visits from my friends and family, leaving me alone monday through thursday. i worry that my sweet, loving, attentive partner will bear the brunt of my frustration.

i don’t want to hide in silence about the struggles that this brings. stuffing all this in isn’t going to do me any favors and it’s definitely not honest. so here i am, sitting on the couch writing about how i feel because i don’t want to actually talk about it. i don’t need emotional rescuing. i don’t need reassurance that everything is going to be fine. i don’t need to be reminded that this is all just going to be for seven or eight months. i just need to write this down, to document this aspect of my treatment. just by putting this out there, i realize i’m not alone. i’m not the first person to have these feelings and i won’t be the last. maybe i should get off the computer, stop writing and go apologize to my best friend for letting my feelings trump his. after all, we’re both in this for the long haul.

call it what you want.

March 24, 2012

i’m having a dream where i’m at a party and i start helping the cater waiters clean up the table because i have decided that i hate the bougie hosts (writing the word, bougie, feels so much more uncomfortable than saying it) and i would rather clean up their mess than participate in making it. yeah, the dream premise is a little lackluster and too realistic. i move seamlessly from stacking some dirty plates to realizing that i’m actually awake and i feel like shit. my body feels like a compressed, rusted, coiled spring. i think i’m going to vomit. my head feels like last night faded to black out around the time i started to fall off the bar stool, laughing my way out of last call. only, this isn’t a hangover. i haven’t had a drink in almost five years. this is a drugover of a completely different beast. what’s my first formulated thought? this is probably a good day. make the most of it. i thought this without self-pity, but with genuine acceptance… today. i’m not gonna play as if yesterday read like the same story.

it’s noon and i’m almost done with today’s infusions, which leaves me the rest of the day to roll around on the floor, trying to “honor my body” and its inability to get into any position even close to a productive yoga pose. there’s going to be a lot of child’s pose happening around here. then i’m going to figure out how to bathe in a manner that actually gets me clean. this sounds like something simple, and indeed, until a week ago, it was. of all the things happening, this is the hardest pill for me to swallow. i come from a hygiene obsessed culture. most days, my japanese parent takes two showers and a bath (sorry, dad. i’ve just outed your hygienic habits. on the bright side, everyone will know why you smell so nice). this whole toad shower, press-and-seal wrapped, dunk and squat to wash my two-feet of hair? it blows. hard. until my shower chair arrives, i’m stuck taking bird baths in my tub. as every japanese person knows, you shower before you take a bath. this chest catheter is interrupting the natural order of bathing. it’s interrupting bathing altogether. also, i’m going to own a shower chair and while i’m all for the lazy, sit on the floor of the shower for an hour routine (don’t you judge me. i have an artisan well. i’m not wasting water, only energy to heat it), that feels really geriatric to me.

today’s theme? acceptance. everything is temporary, even the inability to wash my ass properly.

mom, stop judging me for writing the phrase “wash my ass.” also, let’s not talk about this blog entry when you call me later. okay? thanks. i love you.

i ended yesterday’s post, mid-infusion, craving cookies and sitting on the couch. if i thought that giving myself the actual iv infusion was scary, what followed next was horrendous. i should tell you, i’m writing this from my inexperience, which made this whole event incredibly dramatic. i also feel like i need to document this because this is the kind of stuff i would like to have read. i want to know what someone else on a similar path has gone through, to give this all a shared human experience.

i spent the next 45 minutes staring up at the iv bag, waiting for it to finish. drawn into some hilarious back episodes of archer (okay, i’m starting to warm up to having cable, or at least to having on-demand and premium channels), i didn’t notice when the bag was finally empty. i stood on the couch and freed my line from my ukulele and headed to the bathroom. while in there, the doorbell rang. without an iv pole, i had to set the empty bag down to sign for some packages. i have become the reason that i use hand sanitizer after touching those door-to-door styluses. king ebi, my ten-year-old ragdoll cat, titled “king” for the week because he clearly believes he has vanquished the dogs and now owns the house, tried to make a pathetic run for the outdoors. his pale blue eyes don’t adjust well in bright light and he made it down two stairs before playing freeze tag and waiting for me to pick him up. by the time i got back in the house and remembered that i was on my way to my sterilized office to unhook my iv and flush the catheter jutting out of my left shoulder, the iv tubing had filled with about three feet of my blood. i forgot to close the valve on my powerline, allowing the flow of liquid to reverse because the iv bag had dropped to the ground, well below my heart (unless we’re speaking metaphorically, because in that case, i was tripping all over that panic-stricken, beating mess). of course, upon seeing that i had done something wrong, my lyme-addled brain completely forgot about the catheter valve.

okay. blood. i can handle that, right? i just needed to disconnect and flush the line. i washed my hands and ran into my makeshift procedural room, unwrapped a sodium chloride injection, unhooked the iv bag, wiped the caps with alcohol swabs and screwed the injection onto my line. when the sodium chloride injection started blossom with my bright red blood, i realized two things, i hadn’t closed my catheter AND i hadn’t cleared the air from the injection. i unscrewed the injection and tried again, but the plunger didn’t budge. i remembered the nurse who taught me how to use my powerline catheter saying, “don’t force it. call us,” so i called them. i got their voicemail. i left a message that said something like, “hi. i’m having a problem with my infusion and i really, really need someone to call me back as soon as possible, please.” this was said as if it was one gigantic, multisyllabic word. then i hung up and stared at the blood pushing through the purple polyurethane tube wondering what to do. what if the blood had coagulated in the line? i mean, there was a pain in my chest. i felt pretty sure that was from anxiety, but what if it wasn’t? what if i pushed it and sent a clot pulsing straight to my heart? what if i screwed up my line and had to have it replaced? should i just use the heparin injection (the anti-clotting agent)? i thought of my phone call options. not wanting to bother one of my best friends while she was at work, i called a family member and confessed that i had done something wrong and needed her help. she calmly asked me a few questions and talked me through what to do. i needed to sanitize the catheter again and screw on another injection of sodium chloride. i did that and forgot, again, to expel the air (there is a part of me that is completely ashamed that i forgot to tap out the air bubbles…). i started over and to my inexpressible relief, the liquid ran in, pushing back the blood in my line. i hooked up the heparin and injected that too. my brain had forgotten more than medical protocol. it had lost the ability to form complete thoughts, so in an exhausted, adrenalized cloud of gratitude, i thanked my nurse/angel and abruptly hung up. immediately after, dr. j’s staff called me back. “it’s okay,” i breathed heavily into the phone. “a friend who is a nurse talked me through it. thank you for calling me back though.” we awkwardly hung up.

diagram of a central venous catheter.

though the staff at my doctor’s office was incredibly thorough in their explanations and demonstration of how to give yourself an iv infusion at home, they only showed us how to do it once. burned out from travel, from surgery, from the fact that i soldiered on with only one functional arm to go buy shit instead of sleeping off the anesthesia, i wasn’t in the best position to comprehend the demonstration. my partner and i did take film and audio of the whole process, but i couldn’t sift through our hours of footage to find the troubleshooting section. much to my shock, i also couldn’t find any concise instructions online when i needed them. as i was frantically inputting various combinations into search engines, the gravity of this central line catheter dropped like a stone into my thoughts. i have a tube that gives something foreign, something external, a direct shot to my heart. there is room for mistakes, but how much room do i have? i need to get this right and i need to take the time to be sure that i’m fully prepared before i try to do anything new.

i spent the majority of the afternoon and evening nursing a migraine headache, trying to formulate a list of questions to ask the clinic infusion team. there are so many things i don’t know, and though i like to believe i have all-knowing superpowers, i don’t. i need help. i need answers and i need to get a grip before i do something really stupid.

the photographer in me cringes for everything in this photo, but the girl who feels pretty shitty right now is coming to grips with the fact that not everything about documenting this is going to be perfect. mmm... perfect.

i’m administering my first at-home infusion right now. i’ve jimmy rigged my tubing to one of the stringed instrument cradles on the wall and i’m watching the antibiotics drip down, making their way into my bloodstream.

i made a bumbling video of my solo voyage with this whole new system, though i can’t imagine i’d share it with anyone. it was a painful amateur hour, laden with alcohol swabs and uncomfortable silences where i studied the directions. with the instructional booklet in hand (or rather, on a stool next to my chair), i reconstituted the antibiotics, hooked the bag to the iv tubing, cleaned my line a billion times with alcohol wipes, flushed it with sodium chloride (which cleans the line), attached the iv tubing to my powerline and then adjusted the flow of the antibiotics. it was terrifying, really. i wished i wasn’t by myself. i was scared that i was doing it wrong, that i was going to get germs into my sterile field and give myself an infection. it’s not light-hearted work, patching together a series of liquids that essentially drain directly into your heart. some of the instructions didn’t seem to match up quite right with the supplies i had, but i muddled through. after the iv is finished, i’ll give my powerline another hit of the sodium chloride and follow it with some heparin, which helps prevent clots from forming in my catheter.

now i’m sitting on the couch, wishing i already had the iv pole so i could toddle into the kitchen and rustle up a snack, preferably a salty oat cookie from teaism, but i don’t have any of those. in fact, the only cookies in my house are these andean dream things that taste… healthy. if you didn’t notice already, i am a cookie monster. this is one of many cravings i’m going to have to push through. my partner and i have been working hard to develop some protocols that will support my body, immune system and detox in the best ways possible. i’ll get into that stuff at a later date. at this point, i’m waiting for my shower stool to arrive so that i can bathe properly. there are so many aspects of this treatment that i didn’t consider- like not being able to hop into the shower.

health wise, i felt okay going into today’s infusion, but halfway through the dripping medication, i’m getting a headache and my muscles are starting to tense up. i’m drinking water like i’ve been lost in a desert for weeks, but i still feel dehydrated. my glands feel like they’re swelling by the minute. and this, this is the easiest month. this three-week course of iv meropenem is aimed at killing the spirochetes that are in my bloodstream, free agents waiting to make a move into a colony or some organ tissue. it’s a broad spectrum antibiotic that’s also used to treat conditions like pneumonia.  yesterday i felt pretty awful- joint and muscle pain, my skin felt like delicate paper, and the muscles in my face felt brutalized. my gums started to swell and even my teeth hurt. i felt a hundred times better this morning, which doesn’t translate to anything close to 100%, but i was grateful for the relief. i wonder if this is going to be an every-other-day situation where i feel awful one day and better the next. i can get behind that.

i really, really need to go through all of the information that i received on tuesday and figure out how to create new systems to manage it all. everything with my treatment changes. new medications are added on certain days of certain cycles. on the days that i’m not administering iv antibiotics, i have to give myself infusions of lactated ringers, which are to help my body detox. i think that’s what they’re for anyway. see! i need to do some research and i need to do it fast so i can get a grip on what in the hell i’m doing and why i’m doing it. once i understand what all of this is for, i’m sure it won’t feel so scary. once i’ve sifted through all the footage of my four-hour long appointment with dr. j and his staff, i’ll come up with a nice blog entry about that experience and my very first, in-clinic iv infusion. honestly, it was so long and i was already so tired from the trip and the powerline surgery that i couldn’t make heads or tails of anything. i do feel that the information i received during that appointment is pretty vital to this entire treatment path, and so, i promise, that when i’ve got it sorted, i’ll write about it. for now, i’m going to spread some chocolate almond butter on those quinoa cookies and pretend i’m eating something that’s off the healthy menu.

oh p.s.- if i’m not answering your calls or responding to your texts, please accept my apologies. i’m so grateful for your love and your support. i appreciate the fact that you’re thinking of me. really, that means so much to me. i’m just overwhelmed right now and am having trouble keeping up with everything. i’m not intentionally ignoring you, i swear. i’m only trying to deal with all. of. this. ❤


post, post commentary: why does this picture look like i have grey hairs everywhere? i’m not opposed. i do have some grey. but not that grey. there’s no streak or anything, only the occasional silver thread here and there…

additional commentary: also, my left hand looks like a zoidberg’s claw. this is a terrible picture! why did i put this photo up?

subtitle: what to expect when you’re getting a powerline placed for lyme.

i don’t know why i associate georgetown, dc with will smith. apparently, enemy of the state had a bigger impact on me than i ever knew. i did enjoy that movie. huh. imdb gave it crappy stars.

ahem. on to some real talk.

i tried unsuccessfully to write this last night. i was like a puppy battling sleep, her head bowing, eyelids fluttering, chin dropping and then she remembers- she’s trying to stay awake. the night before my surgery, in a fervor of gluttony before the dreaded “can’t eat after twelve” warning, i came back to our hotel and found myself sleepless. i wasn’t worried. since we arrived in dc, i haven’t been scared. i just couldn’t sleep. in the morning, my boo and i dragged our sleepy butts out of the hotel and just down the block to george washington hospital, where i was going to have a powerline placed in just below my right clavicle. we followed instructions and went to registration. a very serious man asked me a few questions and gave me a pager not unlike the kind i get when i’m with my grandpa at the olive garden. i was to come back to finish my registration when the pager went off. The pager had not vibrated or blinked. suddenly, the small, serious man came racing around the pager whisper shouting “you did not answer your pager!” i imagined we were back in 1992 and he’d called me from a pay phone with a 911 page. i thought this was funny.

after registration, i was taken upstairs where i was prepped for surgery- not a big deal. they were highly organized. the staff was sweet and joked with me. i was a model patient, observant and mildly funny. i didn’t really have any real questions so i kept asking if we were going to drop my bags off with my partner. one of the nurses asked me what “my partner” looked like, or at least that’s what i thought she asked. i replied with, “hairy. he’s got a giant beard.” as she walked away i yelled out his name to her. she called back, “you never know. when someone says partner, it could be anyone.” moments later, in my observation room, they both appeared. she had gone to the waiting room calling out the name “harry.” my partner was one of two people waiting. they relayed the story when they came back to observation. i thought this was hilarious. i laughed the whole way to the surgical room.

on the operating table, there was pop music piped into the room. the first two songs i ignored and then came adele’s “someone like you,” and i started softly singing along. my anesthesiologist came into the room (not able to hear me singing) and said, “i love this song. i can’t believe i like pop music now, but i really love this song.” this was a good topic for us. the surgeon was jovial, explaining the procedure to me. the nurse was so sweetly complimentary. i drifted off into fentanyl & benzo sleepy land surrounded by my three new friends.

so the procedure goes something like this:

the patient (ie: me) is given twilight anesthesia and lidocaine is injected into the tissues surrounding the future sight of the powerline (this is a brand of picc lines that are placed in the chest. essentially, the powerline can handle greater pressure than an ordinary picc. i think that’s what i was told, anyway). interventional radiology uses an ultrasound to find the exact vein that the line will be placed in. two incisions are made. one is a little below the clavicle and this is where the line protrudes from the body. the other incision is to place the line. it’s just above the clavicle and is made in order to thread the line over the collar-bone, ending in the spot where this annoying purple tube juts out of the chest. the tip of line rests in the distal superior vena cava, which empties into the right atrium of the heart.

this information is how i’ve interpreted all that i’ve been told, but i might be wrong about a few things. should i make a disclaimer? i am not a medical professional, just a professional patient. bear in mind that i was given lovely and hefty drugs during this whole thing. then, in spite of the fact that i would have loved nothing more than to stay in my sleep-state, they injected something into my iv that reversed the anesthesia. i woke up, remembered to ask the surgeon for a report to give to my doctor (a report that i was unable to get due to hospital red tape). i recall being slightly worried that i had bad breath. this is the kind of person i am- two minutes out of surgery and fretting about dry mouth and halitosis. there are so many things wrong with me… then i was wheeled back to the observation room.

the nurses offered to bring my partner back. “if he’s sleeping, don’t wake him,” i said, at least twice. but then his beardy face appeared at the side of my gurney. “aren’t you tired?” i asked him. he sat in a chair. i really, really wanted to sleep, so i invited him to sleep in my hospital bed with me. i figured that if he slept too that i wouldn’t feel so bad about snoozing. no such luck.

the nurses brought me a water, which i tried to grab with my right hand. i knocked it over. “oh shit,” i said. “i dropped it.” they assured me that it was okay. i drank it with my left hand. another task arose and i tried to lift my right arm. i pulled it up, elbow to waist, and it dropped like a stone back to the bed. i touched it with my left arm. it was numb, like lidocaine numb. i called a nurse over to discuss my odd paralysis. they sent a doctor in to ask me to raise my arm. i could not. as hard as i tried, as much as i willed it (not unlike the years i spent as a school kid trying to harness the powers of telekinesis, which i did not have, trying to make a pencil slide across the desktop), it kept falling back to my side. “it may be that they nicked a nerve and it’s just irritated,” the new doctor told me. “it should go back to normal within the next 24 hours.” this explanation would have been completely acceptable had i not had a wisdom tooth pulled three years ago that caused permanent nerve damage to the front of my jaw. i still don’t have full feeling in a three-inch section of my face. but oh well, i had bigger things i wanted to do. i wanted to go buy some shit on m street in georgetown.

unable to lift my arm, woozy from drugs and in a fair amount of pain, i refused to get a cab and made my partner walk a little over a mile to the row of upscale shops down the street. i purchased a few vastly different and entirely adorable pieces of clothing, one of which was completely band of outsiders spring 2012 and cost $30. feeling triumphant and exhausted and pained, i consented to a cab ride home. cabbies love short fares, especially when they’re less than a mile with no turns but lots of traffic. so we tumbled out of the cab, stumbled up to our hotel room, and i fell asleep. when i woke up, i could move my arm again.

that, my friends, is the story of the powerline placement. sweet jesus, typing this was actually quite painful. i never thought i’d long for the coffee table that i have to hunch over to write (or stack my laptop on four yoga blocks, which is what happens more often than not).

the funeral is over and the celebration has begun.

i knew that yesterday’s morose entry was a buzz kill considering i’m finally moving ahead, rushing the line and upping the fight against the spirochetes i’ve been harboring since… well, maybe my whole life. i’ll never really know. i wish i could write that i’m one for allowing myself the space to actually feel my feelings, but that’s not at all true. it would be nice if i was, but i fight them tooth and nail. however, in this last bit of time, i’ve been right there, holding court exactly where i’m at. that’s no easy feat, but i’ve worked hard to stay open and honest. today, i’m brimming with gratitude and joy.

i’m indulging my guilty pleasures, like crappy french electro pop and liz lovely german chocolate cake cookies (they are ridiculously delicious, not just for a dessert that’s gluten-free and vegan. these are good by any dietary measure). i’m on my second grape chia kombucha. look, i get that my naughty snacking is probably some of the healthiest stuff most people would ever eat. if it helps you relate, i devoured a package of sopressata for breakfast. i’m pulling out the hip hop/pop that bring out my best bounce and body rolls. when i get too tired to keep up this dance party, i’m going to toss myself onto a pile of down pillows on the couch and watch tv shows with weak plots and pretty actresses. i’m going to fall asleep in my down nest. i’ll lazily wake up and find where i left off. for the first time, i’ll appreciate having dvr. i’m not going to lift a finger; nothing in the house will be cleaned today (that’s probably a lie). i’m going to walk barefoot on the sun-warmed deck and lay on the the rug with the dogs while they snort and wiggle around me. when the sun sets, i’m going listen to ministry and think about all the fantastic times i’ve had over the years. i wonder if being sick has taught me more about living in the moment than i have given it credit for. i’ve lived hard. i’ve loved hard. i’ve lost hard. and i’ve grown… a lot.

after sharing my fears about handling my treatments by myself, my crew of friends and family have shown up. they’ve made their love and support so clear that i’d be a fool to think that i’m doing this alone. even in those slivers of time that i feel like it’s me against the world, i know i’ve got an angel at my back. plus, i’ve got the most amazing partner who is down to dredge the trenches with me.

this party for one is epic.

in the spirit of confessing things on here that i have trouble verbalizing to my closest loves, i’ll go ahead and tell you that right now i’m listening to this song. you heard that right. i’m sexy and i know it.

laying it to rest.

March 13, 2012

i just realized that i’ve been sitting in front of a blank screen for almost an hour, listening to wistful songs, by musicians like rachael yamagata, and staring meditation style, unfocused on the short distance before me. while it’s true that i have a space in my heart that is simply devoted to any of my half-japanese brethren, i think today i’m drawn to the heartbreak.

i’m waiting for dr. j’s office to call me to schedule the installation of my powerline and my first iv infusion. it may happen as soon as next week. so why the sweetly sad songs? this disease has shaped my life decisions. rendered completely unmanageable by my raging tick-borne diseases, i’ll overlook my autoimmune diseases contribution to this conversation (yes, i’m having a conversation with myself), so much of where i went, what i could or couldn’t do, has been dictated by how sick, how unstable, how well, or how capable i have been. there were also the big “fuck you!” to my wellbeing moments where i chose to live like i was going to die. i don’t really remember those years now though… my adult life has not been a series of decisions that i made based on what i wanted or what i wanted my future to look like. at one point i had a revelation that i should no longer make any decision based on what i wanted to do, but instead should make them by ruling things out. i picked off dreams like tin cans on a fence. i actually thought this was brilliant of me- to stop dreaming of a life that answered my highest hopes. instead i resigned myself to an existence outlined by my inabilities.

i have lived in a state of constant pain for what feels like an eternity.

my relationship with my body has been one of uncertainty and a tumult of heartbreak, and so with hope on my horizon, i am letting go of the past. in embracing a new future, i am saying goodbye to the way i have lived. and as much as i have always wished for something different, i have grown comfortably numb. the loss of any relationship garners grief. today i find myself grieving for a life i never wanted.

saying goodbye for me has always been a bittersweet experience. i am coming to a vantage point where i can look at how illness has shaped me. reluctantly, i have to look at how being sick has served me, how i have used it to get what i wanted, how i have entangled myself in the arms of someone who did not love me, but kept me close without regard for my wellbeing. i’ve been in this abusive relationship for longer than i care to admit. i have played a role in all of this and in order to move forward, i need to own my part. i have long grieved the losses of the life i dreamed and now i grieve the loss of the life i have lived.

i am grateful for the opportunity to finally believe that all of this pain will be transformed. though i know that iv treatments will likely not be the end all of sickness, i am grateful for hope, for the possibility of health, for the chance to shape a new future.

today i am walking into the light of letting go.

now, if only the office would call me and give me a date for my procedures.

rather than hold onto a broken dream, i’ll just hold onto love.

*addendum- right after i published this, the clinic called me. i will have the line placed next monday and the infusion on tuesday.

it’s a belle & sebastian kind of saturday morning (that’s a band that my cousin introduced me to in the mid-to late 90’s. i didn’t give them a chance back then. i was more of a tribe 8 kid who was in the closet about her love of folk and pop music). i’m in need of cheerful instrumentals with sad and wistful lyrics, lest i go for the sad bastard music i really want to put on.

i’ve been working on a blog entry since i woke up a few hours ago, weaving my way through a ton of research and medical information, trying to come up with a respectable explanation of the results of my PET scan and my current medical state. however, i’m feeling too delicate and a bit too down to post what i wrote. i’ve been feeling inexplicably depressed for the last few weeks. my test results had nothing to do with that bit, but undoubtedly some of what i’m facing in the next few weeks/months has compounded my immediate sadness.

dr. j has determined that i’m ready for phase two of my treatment, which means that soon i will have a PICC line (a peripherally inserted central catheter) inserted in my bicep or a powerline cvc (central venous catheter) installed under my clavicle. why does that sound like i’m deciding on which type of electrical wiring i want to run while doing my home renovation? both of these devices are used to deliver antibiotics to my superior vena cava. yep, a mainline to my heart. after i talked to the physician assistant about where my treatment was headed and what to expect during my pulsed iv antibiotics, i felt completely numb. scratch that. the numbness only lasted a couple of hours. after that, i reeked of fear. my bouquet was filled with an array of indecipherable emotions complimented with a distinct collection of finely grown anger. i will not be able to lift, push or pull more than 5 lbs. my alexander wang purse weighs more than that when it’s empty.

iv treatment is what i’ve been waiting for. it’s what i need, but right now i’m really, really worried that i don’t have a support system in place that i will need to sustain the basics of my life. i’ve been too sick to put down thick roots in our new town. i don’t have many friends that live closer than 1.5 hours from me. i’m afraid that all of these responsibilities, my responsibilities, will come down on my partner, who already works a lot and commutes into the city during the week. i won’t be able to carry groceries or pick up my 20 lb dogs. i won’t be able to reach one of my arms above my head. i will need help with so many basic things. there are all of these limitations that i’m honing in on right now. i’d like to be more positive, having received clearance for the treatment i want, but in this moment, i’m not. it’s a good thing that life shifts, feelings come and go, and that i won’t let myself wallow for long. i know. i know. this kid is going to be alright.

there’s a starman waiting in the sky. he told us not to blow it cause he knows it’s all worthwhile.”