serendipity...danish style

1.6 (normal creatinine 0.5-1.4)

it's official. on july 5th @ 08:00 am, i will under go a renal, ct biopsy. a ct scanner uses x-rays and advanced computer programs to create detailed images inside your body. the ct scanner is typically used in an enclosed area, so those who suffer from claustrophobia might be given medicine to relax the patient.

[really? more drugs? you don't say...]

so sharpen that javelin and stock up on the ativan; just please let my husband stay in the room...

the pathologist (tissue doctor) will investigate 3 separate issues:

1) white blood cells infiltrating the kidney (indicating infection), because i am potentially under immunosuppressed.

2) the polar opposite: a potential toxic amount of cyclosporin attacking the kidney from functioning properly.

3) antibody rejection: my greatest fear. that kevin's antibodies are attacking my antibody free kidney.

as we learned back in november, my kidney had unbelievably developed no antibodies to my mother's kidney. but now tenuous possibilities spread before me like a ratty motel carpet...pilly and frayed...flattened by shock and awe, and sprinkled with a wee dash of self-pity, too...

so yesterday, through a bellowing, beacon of belief, i called out to my bedstemor through my blog's post ("the good, the bad, and the urinary")...

sometimes "serendipity" is not just that gourmet, dessert shoppe in nyc, but a gift that shoots adrenaline from the roots of your tippy top down to your pumiced soles and all throughout your weakened frame...

[and lo, and behold...]

in the mail, was not one, but two handwritten letters by my bedstemor...for whatever reason, they had never been sent. i held them in my hands, turning them over and over, unable to break their seals and dispel the anticipation. i needed to savor the gesture and prepare for the onslaught of emotion that i knew would bring me to my knees...and then i saw onkle steen's note...

"hey henriette, see what i found today-a letter which was not sent from b-mor to you. you were always on her mind...and now sitting in her heaven she says "very well my son you have found the letter and sent it!"

the kindness of his effort, the immediacy with which it was sent, and the heartfelt english note didn't quite bring me to my knees...but soaking fetal in a bathtub, mixing tears with coconut bubbles comes close enough, right?

yet i still couldn't bring myself to read her words.

but when morning (afternoon?) broke, the rays of high noon searingly branded my heart this scorching reminder. that ms. serendipity only fleetingly graces our lives; with the rarest overt offerings of opportunity. skeptically dismissed by cynics as coincidence and to the rest, thrillingly embraced as a delicate slice of destiny...

[i'll take a small piece...but save me the rose...]

roses were my bedstemor's favorite flower. in fact, my grandparents garden was a virtual eden devoted to this blossom. it was the reason i chose to have only roses at our wedding, and hold them close to my heart, as i walked down the aisle. the rose is a symbol of love and a symbol of balance. the beauty of the rose expresses promise, new beginnings, hope...

and then i remembered that bedstemor didn't want flowers at her service. and that was the essence of her soul. to leave the roses behind for the rest of us, while she travelled onward to a place i know; i will; i must see her again...

so ms. serendipity manically seized possession of my fingers, and ripped open the letters like a hyperactive tot on christmas eve. their mercurial moods; both bursting with uncontainable joy and quivering trepidation that they might be disappointed by what they asked for.

but it was all i wanted, and more...

to see her valiant scrawl despite her years of arthritis. to revel in her endearing hybrid attempt between english and danish and finally, the card's deeply nostalgic smell. dreamingly inhaling her letters drifted me back to those idyllic moments we shared. and faster than the speed of sound, i clutched denmark in my shaking grasp.

clutching, never wanting to let go...

but the greatest gift was her words.

there are no accidents.

for a woman who showed in every way possible that she loved, and loved hard, it was not often that she expressed those 3 little words. more danish tradition than personal omission.

but in these letters, she firmly instructed me to live a good life. that i was lucky to share my life with someone i love, and that they were so very sad i was sick. she told me we should take care of each other. that she missed me. and that she loved me.

and then i fell to my knees...

i am not happy. i am tired. and i am scared.

i want so desperately to enjoy my life again.

no more tests, no more meds., no more doctors, no more hospitals. no more...please.

but on the very day i needed an angel to guide me through this chaos; a hand to reach down through the muck of my challenges, confusion and desperation and clasp mine in hers...an angel did.

and now i know this angel won't ever let it go...

"can you help me
can you let me go?
and can you still love me
when you can't see me anymore?"

[kt tunstall "the other side of the world"]

now i know you can...see you on the 5th, bedstemor...xo

the good, the bad, and the urinary...

like myself, the owl by nature is nocturnal...

"the owl awakens its higher self at night. it comes to those who are more scorpionic (ca c'est moi). honored as keeper of the spirits who had passed from one plane to another...owls represent wisdom and knowledge, because their nocturnal vigilance is associated with that of the studious scholar or wise elder...insightful, wise, protective, mystical...symbolism of the owl is deep and intense...in some cultures, their symbolism revolves around guardianship of the underworld and protection of the dead...

[take that, you morning people...]

who knew i had a muse in a bulging-eyed, feathery, avian compatriot?

is it wrong to be jealous of a bird? they prey, they swoop, they eat, they poop, they sleep, they prey...well, you get the idea...

that is their identity.

but for several weeks now, i have been struggling to diagnose my new identity.

["good day, sunshine..."]

flutter, flutter, rub, rub...dig mr. sandman's gift from the corner of eyes, roll over onto throbbing incision and squint obstructively upon bedside's florescent numbers..."12:11 pm...oh, not bad"...wait. rub, rub, rub..."2:11 pm".

[insert: george carlin's forbidden 7...]

feel heart blisteringly plunge more swiftly than the pocketed stones that careened virginia woolf downstream to her demise...

granted, i am the anthropomorphic version of the owl...for better or for worse...my racing brain, palpitating heart and a body brimming full of drugs galvanize this soul during the oddest hours. i circle the coveted ring of REM for hours, until the first rays of sunlight shyly peek their beams of hope above the mountain tops...

identity.

the irony behind my recent search, has been the loathing i felt for "the biz's" necessity to do the same. i always held in lowest regard, it's incessant need to pigeonhole your look, your voice, your body...as if these superficial factors determined your authentic capabilities/talent. assigning an identity was their lazy way to eliminate.

so why am i so obsessed with identifying mine?

for so many years, societal identification pegged me as a chronically ill wannabe. an addict, on disability and tripping to cedars more frequently than i pop pills...

yet curiously, i am not a person who embraces society's opinions. the law? sure. but the chronological, "proper" route we are required to abide by...thank you, but no...

but when the only identity you comprehend is lying sweltered, curled up in the back of a stuffy, filthy station wagon; desperately waiting for a number that will delay yet another test...yeah, you crave an altered state...transformation...feverishly squeezing through alice's miniature door away from limbo...

but for now, i am simply stripped. stripped barren of the healthy life i cherished for so long and jammed unyielding between illness and redemption...

[so, analyse this...]

strip your life of every role you hold dear. being a parent, a friend, slogging away at a challenging career, volunteering (oddly, picking up after 100 + hounds, is frowned upon for the immunosuppressed) and physically thriving down to your core.

in the alternative, insert frequent hospital trips, pharmacy runs, swallowing medications 4 times a day, sleeping 12 hours a night, engaging more frequently with your doctors, nurses, transplant co-coordinators and technicians' lives, more than your own, beloved friends.

this is not about being positive or negative. i am positive. i don't believe i would have survived 30 years of kicks, punts and punches to my kidneys, had i not embodied that spirit. as my toronto nephrologist so bluntly articulated, renal failure is a life long issue. but there is an enormous difference between reality and cynicism.

and reality is where i groove.

a couple of weeks ago, as i sat in the transplant clinic waiting room, k and and i engaged in one heartbreaking conversation. post-transplant, this elderly dame had been released for a mere 4 days, before rejection set in and tossed her back into the hospital for over 3 weeks.

i feel annoyance that society's simplistic impression is "insert kidney, do not collect $200 and do not pass go"...for this is no a game. and as physicians hold brilliance within the palms of their hands, i remain the guinea pig who must humbly and vulnerably nibble away for my survival. i am the rodent who must scurry home and run endless, mindless circles within my caged wheel, 24/7, while physicians escape their patients, their stories and the hospital with all it's chaos and confusion...

yes, rejection has the potential to be controlled. and for now, that remains my entire identity. dreaming and hoping and wishing and praying...but whether it's the spectacularly agonizing wait at home, or the trapped existence upon a hospital bed; no sleep, no privacy, no peace; you are always aware that you are part of some bizarre alien experiment...

["tell me why i don't like mondays?"]

and so i conjure up my recently departed bedstemor...whose infallible attitude continues to inspire me. she coined the phrase "just do it", long before nike patented it.

do you know that song?

the one that you deliberately play in order to indulge your sadness during those 3 am moments. the ones that propel your emotional snowball as it hurtles down your mountain of sentimentality...

well, i played that song today. over and over and over..."the other side of the world" (k.t. tunstall)...and i cried, and missed her and eventually became inspired...

inspired to stay realistic. stay firmly cemented in positivity. and hold her example close to my heart.

perhaps there is an end in sight. but sometimes i wonder if the means to this "end" is worth the struggle.

but, i know bedstemor would have thought so. and that's good enough for me.

[monday. a new week. a new test. and renewed hope that my creatinine will fall faster than the tears i shed.]

i wonder if owls like mondays?

science fictionista

for these certified night owls, arriving at 07:00 hrs., at cedars, was probably more painful than the idea of a potential biopsy hurtling through our thoughts and palpitating in our hearts...

in fact, even the transplant lab doesn't open until 8 am. now there's a facility after my own heart...or is that kidney?...

we dragged weary limbs and heavy hearts over to the outdoor plaza where a sprightly fountain attempts to detract? amuse? engage? the stressfully sick into distraction as they are poked and prodded inside a sterile (and let me confide, rather stinky, cubicle). one cup of urine later and we were technically "released" until the result came through STAT.

what does one do in a hospital when you have several hours to kill and your mind is racing faster than the "zipper"?

why, you hit up the upscale "clark gable" cafeteria for a delicious bowl of oatmeal of which i ate approximately 2 and a half bites...

i found it unfortunately coincidental that our table was positioned directly under a massive portrait of one jean harlow, the young movie starlet who died of renal failure. ah...irony. you wily woman...

so whether it was stress or the cold i felt brewing in my left nostril, or my intense desire to run screaming from cedars-sinal; naked down the streets of beverly hills, i begged off the remainder of breakfast and peeled off over into the parking lot.

was there ever a more ridiculous sight? nestled fetal in the back of our station wagon; entwined under maggie's blanket; my eyes peeled skyward (roofward?) as i watch the minutes tick away on an invisible clock.

and then exhaustion conquered all and blissful unconsciousness swallowed me whole...then vaguely, far off in the land of hazy thoughts and blurry vision, a chime began to peal...

and once again, kevin masterfully took charge, answered the call, and echoey warble became articulate words i could eventually identify...

"ok...not today...creatinine 1.4...come back monday...we'll do it all again..."

and kevin turned to me and said, "are you happy?"

"mmmm...happy?"

no. i'm not happy. 1.4 is still the high end of normal for creatinine (0.5-1.4). i am disgruntled by the part-time job this life at cedars-sinai has become. saddened by the realization that i see all my doctors and nurses and technicians more often than my friends. feeling like sisyphus, rolling that boulder all the way up to the top of the hill, only to have it plummet back to the bottom again. the endless game of chronic illness.

and i have 3 different opinions to content with, to mull over, and to dissect.

dr. cinman, my urologist, felt "his money" was on rejection because of the inflammation, not fluid.

dr. dauer, my nephrologist, felt i have fluid that was causing the swelling.

and dr. kawagi, my attending physician at the transplant clinic, felt my increased blood pressure could be increased cyclosporin. OR an occluded renal artery.

and the best part of all is that none of this information is definitive! (this is sarcasm...)

so as dr. dauer has so often articulated...medicine is an art; not a science...

so bring out your paint brushes, my cedars clan, for i'm depending on you to create, fashion and think outside the box (of the textbook). but hey, i'll take a little bit of science fiction as well...actually, i'll take a lot...

i feel like han solo gone underground, frozen, waiting for a rescue that i wish i could provide for myself.

so instead, i go surreal. and pack a bag this sunday night, with the anguished anxiety that may be checking in for a biopsy on monday...

there is beauty in nature and there is beauty in science.

is it too much to ask for a bit of both?

shattered part 2: an emotional crisis in photos!

so here we go...

without literary swirls or pearls of transcendent magic...

for i am speechless. my tongue is numb, my brain is fried and my heart has been flattened by the recent turn of events.

today, kevin and i arrived at cedars-sinai at 7:50 am. i checked in, and had my blood drawn around 08:30 am. then we scurried over, like squirrels frantic for their acorn fix, over to the mark taper imaging center. i was scheduled to undergo a renal vascular ultrasound which shows pictures of veins and arteries, @ 09:00 am.

and so we met francis. a more than amiable woman who ooohed and and ahhhed over the blood flow my newly donated kidney projected upon her screen, as she gelled her way to information. despite my desperation to break out into tears of joy, my gut clung to a deeper instinct that something was askew...

we walked back over to the transplant clinic, and met with dr. k.; my favorite attending physician. high on my list simply because of his attentiveness and cautious behavior; but nothing could be resolutely determined until my blood results came back...

so, we walked on. over to the "ray charles cafeteria" for some lunch, and away from the stress that subtly chokes one, deceivingly, like a sleeping bag or a hermes scarf...

and then it was time to see my physician crush. 74 year-old dr. dauer whom i have worked with for 15 years and whom i adore. when he inspected my kidney, the first thing he said was that it looked swollen. and we agreed. this was not sigourney weaver's "alien", by any stretch, but there was nothing normal-looking about this transplanted kidney...

not good.

and so i made an appointment to see a urologist. to determine whether or not my kidney is retaining fluid...

minutes after arriving home, i received a call from the transplant clinic...

my creatinine had spiked from from 1.3 to 1.6. it has travelled, since day 1, from 0.9 to 1.6. i am no longer in a "normal" range (0.5-1.4). as i quivered internally, my post-transplant co-coordinator's words echoed in my ears..."you need to have a biopsy".

my heart sunk faster than charlie sheen's career...

a biopsy is no small event. a needle the size of a javelin is inserted into the organ, and there is a strong chance this procedure can cause rejection...then a pathologist (tissue md) determines what the primary issues are. to say i am scared would be a gross understatement. i am terrified. completely.

after my biopsy i will be monitored overnight at cedars and as they so casually amended, if i "reject", i will be in the hospital for 3 nights. at the very least.

no, no, no, no, no...

this is not what i pictured.

this was not my hope, my wish, my dream...

this is not fair...ah well, who said life is fair?

shattered

so here we go...

without literary swirls or pearls of transcendent magic...

for i am speechless. my tongue is numb, my brain is fried and my heart has been flattened by the recent turn of events.

today, kevin and i arrived at cedars-sinai at 7:50 am. i checked in, and had my blood drawn around 08:30 am. then we scurried over, like squirrels frantic for their acorn fix, over to the mark taper imaging center. i was scheduled to undergo a renal vascular ultrasound which shows pictures of veins and arteries, @ 09:00 am.

and so we met francis. a more than amiable woman who ooohed and and ahhhed over the blood flow my newly donated kidney projected upon her screen, as she gelled her way to information. despite my desperation to break out into tears of joy, my gut clung to a deeper instinct that something was askew...

we walked back over to the transplant clinic, and met with dr. k.; my favorite attending physician. high on my list simply because of his attentiveness and cautious behavior; but nothing could be resolutely determined until my blood results came back...

yes, we walked on. over to the "ray charles cafeteria" for some lunch, and away from the stress that subtly chokes one, deceivingly, like a sleeping bag or a hermes scarf...

and then it was time to see my physician crush. 74 year-old dr. dauer whom i have worked with for 15 years and whom i adore. when he inspected my kidney, the first thing he said was that it looked swollen. and we agreed. this was not sigourney weaver's "alien", by any stretch, but there was nothing normal-looking about this transplanted kidney...

not good.

and so i made an appointment to see a urologist. to determine whether or not my kidney is retaining fluid...

minutes after arriving home, i received a call from the transplant clinic...

my creatinine had spiked from from 1.3 to 1.6. it has travelled, since day 1, from 0.9 to 1.6. i am no longer in a "normal" range (0.5-1.4). as i quivered internally, my post-transplant co-coordinator's words echoed in my ears..."you need to have a biopsy".

my heart sunk faster than charlie sheen's career...

a biopsy is no small event. a needle the size of a javelin is inserted into the organ, and there is a strong chance this procedure can cause rejection...then a pathologist (tissue md) determines what the primary issues are. to say i am scared would be a gross understatement. i am terrified. completely.

after my biopsy i will be monitored overnight at cedars and as they so casually amended, if i "reject", i will be in the hospital for 3 nights. at the very least.

no, no, no, no, no...

this is not what i pictured.

this was not my hope, my wish, my dream...

this is not fair...ah well, who said life is fair?

june gloom

there's a weather system that floats perennially through most of southern california. for one month, a moody moniker is assigned to the golden state, its consistency rivaling the iconic song" it never rains in southern california"...for it rarely does. but every june we are subjected to a depressive force of nature. murky, overcast clouds, blackening skies, and a persistent flirtation that dewy droplets might fall from the sky. but they never do...

the moniker: "june gloom".

as k. and i road tripped home from our first vaca. in 2 and a half years; out the window i gazed at the stark beauty of the desert topography. i was struck by the elegance of the unadorned landscape; mounds of scorching sand, succulents teeming with desert blossoms and the cloudless, steel blue sky; overseeing, up on high, it's country charge, like a babe in arms.

and barely a building in sight...

and like the magnetic pull of the ocean's forceful undertow, sucking you deep into an unwanted place, we were suddenly back in town.

["the boys are back in town"]

unlike the singular lightning bolt one rarely sees, ("did you see that?"), we did feel the rolling thunder moving closer and closer; and heard the ominous vibrations as those visceral notes waft closer and closer; preparing to strum our hearts back into the dulling musak of reality...

the friday after we got home, i drove myself to cedars-sinai. i was admittedly thrilled by this teeny, tiny infusion of independence. perhaps a minimal endeavor; but a massive thrill, nonetheless. my bleary eyes focused intently on the roads, while my hands clutched the wheel as tightly as a member of the blue rinse crowd with bi-focals...confidentially, i do feel slight remorse over my under-the-speed-limit trek to the hospital. but my neighbors' 6 cylinder aggressiveness along the long and winding, cemented, so-cal pathways is equally annoying. and putting pedal to the metal is so not on my agenda right now.

["your impatience is not worth my life..." (thank you, j.)]

i pulled in to the parking lot, under an unusually somber sky. clinic sped by with the whoosh of a desert windstorm and ended with the glassy calm of a lake at sunset...

also on my checklist...the pain center.

and so i wound through the forest of towering, imposing structures which i both loathe and respect. constant reminders that i am not quite the same as everybody else...and yes, on occasion, i would love to chop them all down...(i would say "bomb", but i don't need to get red flagged anymore after my brush with 51/50)...

the meeting was easy, respectful and productive...like learning the backstroke and then slicing through calm, soothing waters of understanding...

[and then...ah. what a difference a week makes...]

6 days later; dinner was designed for our magical friend "m", and as spontaneously as a summer storm can explode in the sky, we took my blood pressure. it was meant to be an aside; a footnote to the evening's discussion about our health. dare i say, a

celebration of my new found good fortune...

163/112...terrible...

in my mind, i ran for cover; hiding underneath a cement bridge with a conveniently carved out cave....away from the unremitting rain sure to wash me away...away from the frigid snowflakes paralyzing every thought i entertain...and finally, away from the arctic, deep freeze temporarily shutting down all freeways out of town...

and so under this bridge, i figuratively huddled, as my husband masterfully determined from the on-call, hospital staff, that i needed to come in tomorrow morning.

["urgent...so urgent..."]

and so we determined that this misstep; this unexpected blip upon my morphing blue screen of health needed to be addressed. like the rising waters of a spring river overwhelming its banks, there are never enough sandbags to stop the tortuous flow of the unwanted...

["kevin, i CAN'T lose this kidney..."]

like a tumbleweed rolling down a sandy, california hillside; collecting every man-made detritus imaginable, and the odd twig or two...the familiar snowball effect instigates both fear and questions...

dr. k met me. under florescent lighting that blinds, familiar instruments that find, and a small room where my doctor's probing exam was kind...

ok. there are 3 potential variables:

"you could be rejecting, and we would have to admit you..."

"your immunosuppressives could be raising your blood pressure..."

"or the renal artery that connects your transplanted kidney could be occluded ( a fancy, md term for the obstruction and/or closure of an artery...) and we would have to do an angioplasty (a balloon-like catheter inserted to widen the blocked artery...]

and with this information, i wait until dr. k leaves the cubicle cum room at the transplant clinic. only then, do i turn and bury my face into my armpit and commence with the "ugly cry"...it's impossible to hear the "r" word (rejection) without visually sending yourself back in time; through renal failure and the hell of dialysis. a hurricane of compromised health destroying everything in its path...

so what do i call this place in which we now reside? the place where everyone believes us to be well and thriving like newly planted tulip bulbs? poking our heads above the soil, peacocking our glorious shades of color, and spreading our thick, new roots underneath the rich and nourishing soil.

tulips only last a month...

so not a "hamlet-ian cloud"; but rather a "hen"let-ian" cloud pervades the air...

sure, that's a bit of a stretch, but what hasn't been, over the last 30 years? i have always reached far and wide with fluttering fingers that promise warmth, comfort and the divine...

so if one month out of the year lapses into testy tempers and waning weather, i can handle that...

[i am still here]

tuesday, i go to clinic again; get blood drawn, have a renal ultrasound, and see dr. dauer for the first time in months..and then we wait...

we wait under the glorious, albeit, cloudy, californian skies...

"june gloom" sounds and is, altogether depressing, but unlike my medical marathon, i know it will be over soon...

if only i could say the same about "the kid"...

anniversaire a la 2 months...

in this household, 'tis verboten to call a certain "someone" a savior...in "someone's" mind, it's just "no big deal". but in my heart, there lies an inexpressible gratitude; a love that overflows and fairly drowns the steps i daily tred...so cool beans...this morning i will let others spill their words...and i'll slosh through their puddles of lyricism, and he can take it up with them...

60 days...onwards and upwards...

"the tide is high, but i'm holding on..."[blondie]

"and life has a funny way of helping you out; when you think everything's gone wrong and everything blows up in your face..."[alanis morrisette]

"smile like you mean it..."[the killers]

"you cut me down a tree, and brought it back it me (and that's what made me see, where i was going wrong)..."[coldplay]

"today has been a special day, an anniversary, a request; that you play your piano as the evening sun slowly sets..."[eva cassidy]

"embrace me, my sweet embraceable you..."[gershwin]

"your songs remind me of swimming; which i forgot when i started to sink..."[florence and the machine]

"penny lane is in my ears and in my eyes; there beneath the blue suburban skies..."[the beatles]

"there we lie beneath a shady tree, i love him(her) and (s)he's loving me..."[the beatles]

"jigsaw falling into place; there is nothing to explain...(wish away the nightmare)..."[radiohead]

"summertime, and the living is easy...(one of these mornings you're goin' to rise up singing; then you'll spread your wings and take the sky)..."[gershwin]

"there's a party going' on right here, a celebration to last throughout the years..."[kool 'n the gang]

"i wanna roll with him, a hard pair we will be..."[lady gaga]

"even through the darkest phase, be it thick or thin, always someone marches brave, here beneath my skin..."[k.d. lang]

"california girls, we're unforgettable, daisy dukes, bikinis on top..."[katy perry]

"standing in the light of your halo, i got my angel now..."[beyonce]

"darling, je vous aime beaucoup, je ne sais pas, what to do; you know you've completely stolen my heart..."[nat king cole]

"hold me closer, tiny dancer..."[elton john]

"ah, the night...here it comes again, it's on with the jeans, the jacket and the shirt"[ryan adams]

"the sun is settin' like molasses in the sky..."[alannah myles]

"we're one, but we're not the same; we get to carry each other..."[U2]

"sometimes i can't believe it, i'm movin' past the feeling..."[arcade fire]

i still pop 19 pills a day.

i still have pain in my incision.

i still visit cedars more often than the wind blows.

but there's a feeling i'm moving past. that feeling of cramped limbs frantically thrusting out of a thick, muddied swamp of stagnant water. now i feel a cool rush propelling me forward. not a forceful, panicked swell; but rather, gentle caressing waves urging me onwards; watery embraces gently floating this woman towards the beautiful unknown...

and sorry, kmac, but it's all because of you...