post-picc wrap up.

March 31, 2013

i am picc line/central venous catheter free and officially through the intravenous portion of my lyme and co-infections treatment. it’s a big deal.

picc free!

piccless (and so, so tired).

i don’t know exactly where to start writing today. i slept like it was my job yesterday (only i put in tons of overtime), and i’m not sure that i’ve woken up from The Great Slumber yet. it feels like weeks have passed since i had my picc line removed, but it’s only been four days. i want to write about having giant, excited feelings about this enormous step forward in my treatment. i want to write those things, but i’m not feeling them yet.

last monday i went in to see dr. j. it had been a little over two months since i last left his office with a suitcase filled with expensive bags of antibiotics and a plethora of accoutrements. i endured two more rounds of the same course of treatments i’ve been doing since early fall of 2012. most patients only treat this particular cycle twice. with the sepsis setback i had in october, i’ve been on this regime for what felt like forever. despite the fact that we believed that this would be my final iv show, we’ve been hoping that for too long for me to count on it. so on the friday before my appointment, i asked the clinic to schedule a picc line removal at george washington hospital in d.c., the same place where i had my chest catheter put in last march. though i had once thought i would keep the line during the switchover from iv drugs to oral meds, after the dangerous “treatment” i received while literally dying from sepsis, i knew that i couldn’t bring myself to return to the horror hospital in my town. they set an 8am appointment with interventional radiology for the day after my meeting with dr. j.

life had been so busy that i didn’t really have the time or energy to fantasize about what life would be like post-picc, but i was still excited. in the weeks leading up to my appointment, i had hoped that a friend could film both my rendezvous with dr. j and, optimistically, the subsequent removal of my picc line. were i to have had a normal picc line, one of the infusion nurses at the clinic could have yanked my line out right then and there. however, i had a tunneled powerline, the same device i had in my chest last year. the cuffed picc line has a tubular bead that lives on the inside of your body to prevent the picc from being accidentally pulled out. it’s highly unusual for this type of line to be placed as a picc (a peripherally inserted central catheter). as the picc runs through a vein that’s much smaller than the artery the chest catheter runs through, it’s not really necessary to ensure that the line won’t be removed unintentionally. the risk that you might bleed out is low to nil, if even possible. i wanted to catch this whole process on film, but when my partner broke his ankle last week while on a photo shoot in florida, my plan fell apart. my mother, who had been in town to help take care of me through the last iv cycle, ended up staying for an extra week and she accompanied me to washington d.c..

it all happened so fast.

dr. j told my mom that i was “incredibly determined” and after a short pause she chirped, “oh i know! she’s always been determined.” this is one way to put it. i suppose, with all the desperate moments, the endless opportunities to give up, i have been determined. but it hasn’t felt like that. it’s felt necessary, like the only trail that could lead me out of the woods. it’s not the first time that i felt like my life depended on my commitment to staying a path less than easy. this is survival in all of its painful, raw beauty. when i tried to shake dr. j’s hand at the end of the appointment, he gave me a hug instead. as one of his harder cases, i know that my progress, my hopeful trajectory isn’t just my own victory. we share in this. i follow his instructions and when those work, i become living evidence that healing is possible, that treatment can and does work.

i woke up at 6am and sleepily waited for my room service breakfast. don’t ever write an amendment to the food-as-is on a piece of paper you hang on your door before 2am. instead of oat and brown sugar pancakes, i got regular pancakes with a bowl of raw oats and three blackberries on the side. whatever. i ate that shit and then skittered out of the hotel in a rush, worried i wouldn’t make my appointment on time. i didn’t, but it didn’t matter.

after registering, i was met by the same man that had escorted me to the prep area for interventional radiology a year ago. he remembered me! he cheerfully led me to i.r. where i discovered that just about everyone who had been there a year ago was on-shift. that continuity helped me to feel like this was really full circle. i had a different surgeon who didn’t let me keep my line after it was pulled. “it’s covered in blood,” he offered as an explanation, even though before the removal he had told me that i might be able to take it home. as if we didn’t know that a tube taken out of one of my veins was going to be bloody. a nurse stuck a bandaid on the site and they wheeled me back to the prep rooms (i bled through that immediately and needed a real fix. all roads lead to tegaderm).

that was it. we left the hospital, grabbed a coffee from whole foods and headed to the car. we did a quick supreme court drive-by to catch a glimpse of the throngs of people gathered as the court heard testimony about prop 8 and doma. had there been anywhere to park, we’d have done more than circle the block. i decided i deserved a reward and cruised m st to see if i could hunt down a leather jacket i’ve been searching for. no luck. by the time we left d.c. for brooklyn, it was almost rush hour. we didn’t make it to brooklyn until close to 9pm and by then, i’d gone at least 12 hours past when my last feeding should have been and i was hangry as hell. there’s an acronym, h.a.l.t., that stands for hungry, angry, lonely, tired… halt. get it? you’re supposed to stop and take care of each of these potential pitfalls before they happen. i laid no preventative measures and ended up feeling all four states. our dinner plans fell through, which should have been understandable considering how late we were, but i failed to gracefully understand that. i guess what i hadn’t asked for or told anyone was that i wanted a celebration to mark this huge event. i’d been waiting for a year, longer actually, for the day that i would graduate from intravenous treatment. i wanted a surprise party. i wanted a toast. i wanted something more than what i got, but i never even hinted that i wanted any of those things.

i headed home before midnight with my mom, partner and dogs, sad and furious, starving and exhausted, massively disappointed that the line had come and gone with no pomp and circumstance. for at least half the drive, i clutched the wheel with one hand and shielded my face so no one would see the tears trickling down my face. i pretended that my family didn’t know i was crying.

at 1:45 am, i tromped through my front door flinging suitcases and haphazardly packed bags. i pouted until i felt ready to talk. my partner was barely awake as i confessed that i was upset that this didn’t feel like a bigger deal. i hypothesized that it would sink in, that after my first real shower, one that didn’t require press’n’seal or painter’s tape (thanks for that tip, btw!), maybe it would all sink in. since the “big day,” i’ve been alternating between massive physical exertion and profound exhaustion. overnight, i became the household caregiver, having to manage my own health needs with my partner’s inability to do much on his own. is it good timing that he broke his ankle at the same time that i was freed from my picc line? glass half full?

today i woke up like a normal person, with energy and intentions for the day. i did more before noon than i’ve often completed in a couple days’ time and even though i didn’t get the reception into post-bionic living that i wanted, i’m appreciating this new era. really, all the reward i need is knowing that this long, painful and tedious part of my recovery is over. the fact that i woke up today, did laundry, cleaned up, walked the dogs and rocked sunday morning like a healthy person is the big deal i was hoping for. the mythical leather jacket i’ve been hunting for might be my materialistic end-game prize. for now, i have everything i need. didn’t i say that a couple of weeks ago? maybe the repetition reinforces my gratitude. today, i’m not hungry. i’m not tired or lonely and i’m certainly not angry. upward and onward. there’s still a long road ahead.

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are we there yet?

March 26, 2013

there’s so much happening that i don’t even know what to write. in keeping with the spirit of what seems to be commonplace these days, i have just closed four other blog entry attempts. i’ve been trying to write one everyday and have failed to finish any of them. i’m also pretty sure that a six-year-old has come in and hijacked my writing skills.

next up, a rant about clifford the big, red dog.

i’m in washington d.c., sitting on a very comfortable hotel bed, drinking courtesy, plasticized coffee and pushing back all the thoughts about everything i really should do before my doctor’s appointment this afternoon. this is a big appointment. after 12+ months of having either a chest catheter or a picc line, if everything proceeds according to plan, dr. j will approve the removal of my line and i will have completed the intravenous roller coaster i’ve been riding. i want to be able to say that i’m prepared for him to also tell me that i’m not finished, that i still need a couple more rounds of iv antibiotics until the infections have been decimated, rendering them critically vulnerable to oral antibiotic and herbal remedies. in spite of the myriad of times i’ve told myself that this is a distinct possibility, that i’ll leave d.c. with a picc in my arm and a suitcase filled with iv meds and supplies, i haven’t really accepted it. i suspect a level of devastation if that scenario unfolds. so… i’m going to keep believing the master plan.

if all goes according to plan, tomorrow morning at 8 am, i’ll have already checked-in at george washington hospital and by 8:30 will no longer be a bionic lyme patient. kinda hard to imagine.

life has hurtled a giant monkey wrench into my partner and my plans. a few days ago, while directing a photo shoot in a swamp in southern florida, my partner broke his ankle. poor guy. after sitting under a poncho in the rain for a few hours while the photographer and model finished up, he had to crawl on his hands and knees to get out of the swamp and back to the car (no, really. he actually crawled out of a swamp). fast forward through his pain, hospital visit and subsequent return to new york. because of everything i already had scheduled, i haven’t been able to even see him since his accident. and i feel terrible about it. he’s been here with me for this entire journey, for the endless months of treatments, the years of emergencies and incapacitation. he’s showed up for me and in this moment, i’m not able to show up for him. i’m feeling like a jerk.

we’re lucky. we know that. we have mothers who are more than happy to fly out and care for us (mine is here now. his will be here next week), but it’s still a tough situation. neither of us are in any shape to really tackle the ordinary daily tasks and handing them over to someone else feels like failure- two grown ass people who need a parent to come play nurse. i’m gearing up to pick up the slack, force myself out of the house and to the grocery store and keep some semblance of order to our already messy house. i’m hoping that next week won’t be another hooked up to an iv pole.

accepting help is a beautiful and painful experience. though i know that i could not have done any of this alone, owning up to being a moving piece in an intricate set of interdependent relationships is teaching me about giving. it’s not enough for me to simply offer my assistance to others. the real lesson, for me, is not in giving, but in receiving. i have been blessed with support from my family, my friends, acquaintances  and complete strangers. i have tried to keep my heart open, to find a comfortable balance between my desire to be self-sufficient and my need for helping hands and hearts. today i’ve made a promise to myself to move through this new phase of my lyme and co-infection treatments with a grateful spirit. in the interim (the time before i change out of my pajamas and put on my outside world armor), i need to fill out some medical forms.

maybe we can go swimming together. it’s been a long time since i could throw myself in the ocean. maybe you should join me in celebration on a tropical beach and we’ll jump waves and lie in the sun with our salty, warm skin, free of tubes and tegaderm.

catch you on the flip side!

phase one consisted of me not leaving the house. this was not because i didn’t have places to be or things to do, but because i was not conscious for most of the time. i wrote how i felt having that first dose of meropenem coursing through my veins- painful, burning, instantly appearing as welts on my skin. well, that’s how the next few days passed. the welts turned sores turned lesions just get brighter and peelier as the days pass. after a few weeks, the redness has mostly faded and they appear as birthmarks. when those finally begin to fade, i apparently start the whole thing over again, so i can’t tell you how that part of the story ends.

oh, and i still have that crappy cold. it’s moved over to my lungs for the most part. i have always felt it was unfair that those of us with chronic diseases and pathetic immune systems are perfect, helpless prey for every pathogen out there. i don’t think a lot about what’s fair and what isn’t, but i’ve though a lot about this one. this has felt particularly unfair this time. i think it’s time to switch dealers because i’m clearly not lucky on this table.

the transition to phase ii was no peaceful switch over. it was one day of… well, a glimpse into the far off future of needing adult underwear, and not the crotchless, edible kind. i ate probiotics like tic-tacs, to no avail. it would have been horribly embarrassing, had i had any shame left. i woke up yesterday morning with a headache that, reasonably, only a long night of drinking and ingesting anything in the form of a line could have brought on. i include rat poison in this picture. the day just seemed to get worse, except that i was sleeping for most of it. my waking moments were nursing home horror show moments.

so there was that.

and i wouldn’t write about it, but i imagine that this is an unfortunately common experience. hey self, you are not the only one doing a load of wash this morning. at least you’re probably not.

filter. where is my filter?

today, my hair, stringy and limp, evidence of the constant writhing and night sweats, i just want to sit on the couch and watch louis c.k. in peace. i want to lay around wearing my horrible skin, with my painful lesions and my scalded face and not have to see anyone. i want to not change my dressing, which is completely peeled up around the edges (though still intact around the biopatch and statlock). i want to not force my sensitive skin into the shower so i can wash said stringy hair. i want to not have to see a mirror for days. i want a cave, with a comfy couch and limitless tv and movies.

i don’t get what i want. that’s how this story ends.

i ate a banana and now i’m listening to my stomach throw a raucous party. i won’t tell you how that story ends (see what i did there? you thought of it anyway. i’m so clever… and not ashamed. at all. i mean, none of this is terribly embarrassing. this is totally within the parameters of shameless. totally…).

i’m not fit for public consumption. i’m really not. and this is probably unpublishable.

whatever, i make a million mistakes. i’ll allow this to go ahead and be one.

meep.

March 11, 2013

oh good lord, this is so awful…

often i think i’m being melodramatic when i look back at the real in-the-moment writing of my treatments. ha! i undersell this. i undersell like it’s hot off the back of a truck and headed for one of those shops with the brighter than bright florescent lights and neon stickers spattered across every glass surface swearing a “going out of business” sale. i price it like i got it for free. i don’t know… maybe i think that i’ll scare off prospective patients. maybe i’ll scare off myself. but honestly, right now, what i wouldn’t give to just unzip my skin and step out of it.

within ten minutes of beginning my first iv bag of merrem, every single faded red spot heard a new call to action and sprung forth. recruiters, the lot of them. it’s as if i’m inside one of those plexiglass pin games, the ones you’d smush your hand into and see the impression of the flat top of hundred of metal pins. yeah, i’m standing in the center of one of those, a 360 degree chamber, chin tipped as high as i can angle it, like if i stand on my tiptoes or hold my breath, maybe i won’t feel the burning of a thousand needles. it feels like there’s no way out of this torture device, it is, after all, my flesh. my thoughts swing wildly between choosing to ignore this pain (totally impossible) and throwing myself to the floor, using the rug as a back scratch pad and my fingers as the diffusers of these tiny bombs (resulting in worse pain). i want to scratch my skin off, leave the muscles and fat to decorate my bones, letting my mind escape from the first installment of 16 bags of this medication, 4 of another and 4 of another. this is not the first time i’ve wanted a way out.

ignore that. it wasn’t meant to read the way it might sound. i’m not actually looking for an escape hatch. there’s not one. or, there are many, but as i continue to reiterate, the only viable choice is to keep stepping up, through, forward. anything else is self-sabotage.

okay, last complaint of the day:

i can’t begin to describe how impossibly torturous this feels. and though words escape me, i don’t wish you knew. that’s how bad it is. it’s not even like the disgusting slice/smear of raclette (cheese) that’s gone off (i imagine this must be among the worst smells of all time), the one you were considering spreading on a cracker to eat before you opened that glass container it lives in inside your fridge. you hold it out to your cohort and say something like, “oh my god. this is horrifying. smell it!” i wouldn’t do that to you, not with this.

me and my reverse hellraiser, the masochistic pinhead whose spikes turn in instead of out, we’re gonna whimper off onto the opposite end of the couch and whine to the dogs about how shitty this feels. immediately after, we’ll pray for sleep because dreams might be the only way to escape this feeling.

if only i could remember how to turn off that “anchored in the present” button, i could let myself loose into a blissful disassociation.

speaking of blissful, a few minutes ago i fired up the record player and listened to “duet,” by rachael yamagata, a wish-she-was-my-sister-but-i’d-settle-just-for-friends singer songwriter. it was everything i’d hoped for in terms of high-fi, granular, raw, indiefolkpoprock music. for four minutes i forgot where i was. maybe if i can get myself together later today, i can start to clean the box of records i brought back from my parents’ house. you know, i discovered that someone stole all the beatles and stones 45s (as well as some others)? it was heartbreaking, a state i didn’t expect to be alone in. but while i saw those records as valuable, as something i would someday ask my parents for, as just one more beloved reason i didn’t think i was like my schoolmates (wishing i’d have been born in time to puff away the summer of love), they were the cassette tapes and cds of my parents memory. “really? that’s awful,” my mother said when i told her the records were missing. “huh,” my dad said. i mean, they had somewhat more significant reactions later, but while i was pouting at the dinner table after finding some of my favorite memories hauled off in secret by the flood clean-up crew of our 1995 summer disaster, i heard my father say to my mother, “what’s her problem?”

“she’s really upset that those records are gone.”

then i tuned them out and began hunting for replacements on ebay. after impulsively bidding on a few ebay auctions ending in less than 60 seconds, i came to my senses. i’ve waited decades for these. i can spend my time getting them back. impatience is one of my strong suits, which makes the opposite something i strive for.

blarg! pain!

all i need.

March 9, 2013

in what’s proving to be less challenging than i expected, i am staying anchored in today, not thinking much about what’s going to happen on monday when i start (my last?) round of iv treatments. being present has never been my strong suit. the fortress of my mind, the one i’ve been fortifying since whatever life’s first big disappointment was, is beginning to let down its defenses. i have been reminded that when i feel fear, i need to walk into it (sure, this only applies to a particular portion of the spectrum of my fears. i leave the healthy ones be. i’m not going to intentionally stare down the barrel of a gun). no matter how scared i might be about what lies ahead, i know i need to stay center path. sure footing is never a guarantee, but it helps.

this is the longest break i’ve had since i began intravenous treatments over a year ago. by the time i finish my first infusion, an entire month will have passed since my last treatment. i don’t think i was supposed to let this long pass between them, but i put my life on the front burner (and i also had a couple of really severe viral infections, i.e. the same colds everyone has been coming down with). i went to visit a friend and her six-month-old daughter in canada. life with a baby in the house isn’t restful, but it felt really good to be able to finally be there. the last time we saw each other, she was just starting to tell people about her pregnancy and i was throwing a party for us before i embarked on the iv delivery portion of my medical journey. a lot can happen in a year. a lot has happened in a year. and even though i imagined i would be farther along in this process than i actually am, i have soared to such heights that the struggle already feels worth it. through years of illness, i developed a perspective where i tried to eliminate the emphasis on a particular outcome, much like one might enact in the bedroom. i was on a decade long losing-streak and i was tired of always trying to find the win. i don’t know when or how i’ll reach the end of my tick-borne disease treatments, but if i can continue to heal at this rate, i can make a life that doesn’t just resemble one i want, it will be one of the versions of what i want. it’s hard to remember that this is even possible when you’re mired in the tedium of an endless stream of painful days. still, it’s not easy to forget that you’re working toward a holistic wellness when you’re suffering as much as i have this year. i’m shifting my perspective. i have an end goal.

my muzzled cynicism rides shotgun, but the nuances of the day to day, of my memories are finally making it back onto the page. i am seeing poetry in the world again. i’ve started to write more than just this blog and it feels so much less forced than it did. it’s not just the beauty of language i’m reacquainting with. i am remembering to breathe (and for those of you who have the more than occasional bout of air hunger, the inability for the brain to feel like you’re getting enough oxygen, you might know what i mean). i am breathing my way back into a state of awareness that i haven’t been able to access for years.

the day after tomorrow, i’ll wake up and connect my picc line to tubes that pump in antibiotics strong enough to warrant a hazmat suit. all the faded sores will spring back to life. new ones will bloom out. i’ll sleep for the first half of the next week and weakly complain for the following five days. my skin will hurt. my apetite will suffer. my mind will play tricks on me. i will feel as if i am the only person in the world who can see me. my physical body will be crushed and my optimism will wane. and then all of that will slowly change as the drugs are slowly flushed out. the heavy job of toxin clean-up will begin and i will feel as if i am climbing up a sand dune. the very idea of taking a shower will keep me on the couch, wrapped up in a blanket in an act of hygienic defiance. i will turn silk clothing inside out so that the seams won’t irritate my skin. that’s where i’ll be soon. it will take time for me to get back to the kind of place i’m in right now. but right now, i’m sitting in a silk robe on a soft bed at a castle/mansion in the catskill mountains, waiting to head to the spa for a massage. my partner is reading a book beside me. out the window, the sun is shining over a frozen lake, glimmering off untouched snow. when the sun sets, we’ll light a fire and enjoy exactly where we are. it might get better than this, but right now, i don’t care. this is all i need.