so this is christmas...

well, it's official.

i knew we'd be at the point of no return when diet changes became mandatory.

[don't you love how i refer to myself as the royal we?]

latest results: creatinine: 3.7; BUN: 69 (i.e. shite results)

my phosphorous is high, as is my PTH (parathyroid hormone) and my CO2 level is low (14).

phosphorous is the body's most abundant mineral after calcium. this is what phosphorous does:

• forms strong bones and teeth
• maintains a normal pH balance
• gets oxygen to the tissues
• makes energy
• changes protein, fats and carbohydrates into energy
• develops connective tissues and organs
• moves muscles
• produces hormones
• uses B vitamins

[so long story short, none of that is currently happening]

WARNING: the following paragraph contains dense medical jargon. reader discretion is advised.

healthy kidneys work to keep these two minerals in balance in the blood. too much phosphorous can cause calcification of the heart, lungs, arteries etc...and great pain. the kidneys also turn vitamin D into an active hormone (calcitriol), which helps increase calcium absorption from the intestines into the blood. when the calcium level in the blood is low, the parathyroid glands (four small glands in the neck) make more parathyroid hormone (PTH). this causes calcium to be pulled from the bone into the blood. too much parathyroid hormone can cause the bones to become weak and break more easily. this is called renal osteodystrophy. (bone mineral deficiency). 


which, as an interesting side note, is distinguished from the similar sounding osteopenia (low bone mineral density) which i have had since age 32.


[oh, dear. i've been watching too many "frasier" reruns]


so, there's that.


then, my co2 level is very low. 14. (normal is 40) it's a measure of acid in your blood. (bicarbonate production) reduced carbon dioxide levels result in reduced oxygen in the body tissues and vital organs, resulting in reduced energy.

[yes, i realize you'd probably rather be stuck in a 20 minute line-up at TJ MAXX right about now...] 

so, just in time for christmas, nuts, chocolate, ice cream and cheese are verboten.

ah, cheese. the quintessential danish food. it practically flows through my veins, being half viking. the stinkier the cheese you are able to consume, the larger your badge of honor. cheese whiz and cheese in a can (gasp!)? sacrilegious!

no cheese? NO CHEESE! now i know how it feels to be excommunicated.

the jist of these diet modifications is to put less strain on an already worn out, underperforming, wee slip of a kidney.

the professionals like to call it end stage renal failure (kidney function @ less than 10%).

i like to call it a big pain in my ass. literally.

i literally hurt all the time. someway, somehow, something's always off.

come. take my hand. let's spend a day together...

having always been night owls, lights are out around 2 am. so i rub my legs together for a while (restless leg syndrome), toss and turn (insomnia), read and finally pass out around 4 am. i wake around 7 am to pee (attempt at urination) and find i can't get back to sleep (anxiety). this is when i hit up facebook and suddenly i'm dead to the world. (turns out i don't care what you had for dinner). rise and shine after my requisite 10- 12 hours of sleep (fatigue) around 2 pm. thank god, for our teeny 1100 square foot house, as i barely negotiate the downing of 12 medications (nausea) from drawer to fridge. now, we make the most delicate of decisions. remain in pajama pants or slip on kevin's old clothes (edema)? i usually go for the former. forgoing coffee for herbal tea (hypertension), i volley between washing my hair or doing the dishes (general ill feeling). dare i try both? forget to eat (no appetite). the day passes into night. sometimes i sprawl lifeless in the passenger seat, as kevin quietly swoops in and magnificently shepherds our life. and sometimes i just lie in bed and play connect the dots (bruising). time for a bath and attempt at relaxation (headache). then it's a final game of "to ambien or not to ambien?" as i stomp out a charleyhorse (muscle cramping), tape up my fingers with band aids and antibiotics (changes in nails) and scratch my skin within an inch of its life (pruritus/itching).

symptoms like a bottomless stocking of stuffers some lame ass picked up walgreen's: generic, torturous and excruciatingly disappointing.

so, here we are. deep in the heart of christmas.

the other day, i watched a documentary on john lennon.

[i told you. i'm in bed a LOT.]

i forgot how much i loved "double fantasy". i was a little too young to appreciate the heartfelt hysteria over his shocking death, but i have always understood his music. and people's connection to it.

and in listening to "happy xmas (war is over)", i was struck hard by the last three words; appropriately parenthesized.

clearly, war is not "over" anywhere. but john and yoko erected a billboard in times square in 1969 (and several other cities) that boldly proclaimed "WAR IS OVER" and underneath, ("if you want it").

and yes, technically, to that dreamer, if we all chose the same...war could be over.

but we are all given greatly varied paths to meander, sprint, rest and journey upon. and it's not what we're given, it's how we deal with it.

- so, yeah. i may have to sit down while kevin finishes the shopping.
- yeah, i may be leaning on the kitchen counter while i do the dishes.
- sure. i spend a lot of time in bed.
- and i shouldn't drive anymore.

there's a war here. within myself. between the woman who is proud when she can independently wash her hair or fix a meal, and the woman hunched over the sink or standing in kevin's office, super pissed because she's focused on only one thought.

[i f-ing want to lie down...]

there's a war within. and i want it to be over...

[the wheels are in motion. waiting now for blue shield approval and then my kevin, my love, gets tested.]

"a very merry christmas, and a happy new year,

let's hope it's a good one, without any fears"-j. lennon

IMAGINE.

praying for pee

it's not a good sign when your doctor looks forlorn and defeated.

it's not pretty, folks.

constant, crippling nausea. no appetite. despite total anorexia, i'm up 10 lbs., because the excess fluid your body normally eliminates through your kidney(s) is now backed up and hangin' comfortably in my tissue.

["hang loose..."]

my greatest fear is what my ever skyrocketing blood pressure is doing to my organs. blood pressure med. number 3 was increased from 1 mg daily to 5 mg daily. prednisone was reduced from 4 mg daily to 3 mg daily. and my xanax was doubled.

[do you blame me?]

i think i can deal with the nausea, the dry heaving, the cramping, the returning headaches, the fungus, the mouth sores, the bruising, the weight gain, the exhaustion...for just a little while longer...

[i think i can. i think i can...]

i get it. we are officially at the end of this renal road.

and then it inevitably floated to the surface. the dreaded "d'" word.

dialysis.

my baby is shutting down faster than a government employee at 4:29 pm.

in order to get this done preemptively, time is not only of the essence, it is a figurative road block.

post-cedars, my cell rang for the umpteempth time. good news (?). cedars-sinai had approved me for a kidney transplant. now we wait 2 days to 2 weeks for blue shield to financially approve this as a medical necessity.

[whatever]

and then i get listed.

i will join UNOS. the united network of organ sharing and begin to accumulate "time". remember, without a living donor, i could be looking at a 7-15-20 year wait because i have already had a kidney transplant. i have antibodies from myself and my mother's kidney that could potentially interfere with acceptance of another organ.

fortunately, cedars-sinai is one of the only hospitals that has a program that addresses this antibody issue.

i am in good hands.

and i have a potential living donor.

[or two...or three...]

when my cell rang, kevin cracked. "remember the days when your cell rang off the hook with audition after audition, and we'd be bursting with excitement? now we celebrate medical approval for major surgery"...

["the times, they are a changin' "]

and we laughed.

and then we were very, very silent.

[timing is everything]

this is the man i have the biggest crush on. greater than donny osmond. greater than bono. and greater than brandon flowers.

a man who met with my aunt in israel-because he cares.

a man who has always respected my creative endeavors-because he cares.

a man who remembers everything i have told him over the last 14 years. my family, my career, kevin, our dogs, our travels, our burglaries-because he cares.

a man who looked like a part of him died when i overdosed-because he cares.

and a man who today, was defeated. because we are now at the end of my renal road-because he cares.

"first, do no harm" should be redefined for dr. dauer. "first, care"...because that's where he lives.

i know time is running out. and fast.

so every time i sit down to pee, i breathe in and out. and wait- and wait- and wait...

and eventually it comes, and i exhale an enormous sigh of relief. pee. it's all good.

[yup, i'm praying for pee...]

dialysis, you ain't got me yet...

invictus

i took latin for two years in high school.

but much like german, where the only sentence i can recall is ,"ein glas wasser, bitte";  i can only recall a handful of phrases. "semper fi", "in vino veritas", and "magnum opus".

"invictus".

undefeated.

today, i lived the manifestation of a 4.5 creatinine. last night and this morning, i dry heaved on and off. stomach cramped with nausea; i endured a long night of discomfort and little sleep. and today, i have been in bed all day.

[with a little imagination, crackers and celery can be simply scrumptious!]

i won't lie. i'm relieved the 13th has passed. it could be 2 years, the now 32 years, or 102 years; but the anniversary of my father's death will always take my breath away. i don't think i'll ever be one of those people that LOVES christmas time, but at least i can release my 10 year-old self's desperate clutch on my heart and breathe more deeply.

but, i do find myself flip-flopping between two of the five stages of grief. my emotional metronome swings between anger and depression. kubler ross advocates these stages as coping tools, and not sequential stops on a psychological subway line. there's no linear pathway to healing...

although acceptance has always seemed like the end of the line.

[where's the express train?]

and then i watched "invictus".

as newly elected president of the RSA, mandela (morgan freeman) astutely realizes that, instead of instigating name, emblem and uniform changes to the national rugby team, the sprongbok's, it is bonding over an existing passion that will lay the foundation for tolerance and compassion and respect in his fragmented country.

things he was never shown. but without which, the cycle of fear will only continue.

holy forgiveness, batman.

over tea with francois pienaar (matt damon), who plays the rugby team's captain, mandela speaks of a singular poem that he would read at robben island. read to himself. read to fellow inmates. and read to get him to simply stand up, when all he wanted to do was lie down.

"invictus", by william ernest henley.

i had studied this poem at u of t, but i don't know that i ever knew henley's backstory.

he wrote "invictus" from a hospital bed when he was just 25. he had lost a son, and had his leg amputated just below his knee. he must have felt cheated, angry and defeated.

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.


despite his physically compromised circumstance, there remains a great power within him. bravely vulnerable to his fears, he is still grateful for the autonomy he possesses. he is accepting, or perhaps simply cognizant, of the years of potential physical and emotional suffering ahead. but, his redemption comes in embracing his power over his heart, mind and soul...

i spent much of today broken. mourning all that is gone, and all that we hope is only "on hold". 

it can get very, very dark in my world. henley and mandela also wandered lost in shadowy moods, but it only made them stronger. because they did not allow their stories to dictate their lives. 

their souls were at the command.

tomorrow, my transplant team at cedars-sinai presents my case for evaluation. if i am approved, my case is presented to blue shield, so they can "deign" to approve a transplant.

and then...well, let's take it one step at a time.

my father was a rugby player when he was in medical school. 

living in a high fire zone in the california hills, kevin and i have discussed what we would take if we ever had to evacuate. [definitely an interesting conversation...] for me, i would only need to take this one photo.

london, england. guy's hospital medical school. 1960.

for me, this photo represents more than my father playing his favorite sport. i see passion, commitment, physical strength and pure joy.

[what a tackle...apparently, rugby is coined the hooligan's sport played by gentlemen....]

and then there came a day when this gentleman could no longer play. when henley could no longer walk. and mandela suffered 27 years of incarceration.

yet, to me, they are all heroes. 

for even the most talented, intelligent, shining examples of humanity are flawed. they plunge the cold pool of insecurities, fears and transgressions, and come up shivering and sputtering, just like the rest of us.

heroes are not the untouchables. the glistening bodied, shellacked mannequin, impossibly witty, problem solving geniuses...

heroes are the ones who are scared, and still tunnel through their torment. then through admission, reclaim their battered souls and emerge as inspiration personified.

and when you bear witness, you are given permission to find the hero in yourself. because i don't want to live through my story. i want to live through my soul...

so perhaps one day soon i will find the joie de vivre my father had into his final days. the full physical life that henley still enjoyed into his 50's, and mandela's impossible capacity to forgive. 

i am still undefeated.

["invictus"]

daddy's little girl

"deal me out, boys..."

probably the coolest pick up line ever. laid thick on my mother at a swingin' 60's london med. school party. my mother was in england for a year as an au pair girl, and my father had fallen in love.

three years later they were married, lived in england for two, and then took the queen elizabeth II over to toronto, canada in 1965.

on december 13th, 1978 he died at age 38.

he loved to cook, and he loved to fish.

he collected stamps, loved rugby and was obsessed with soccer. if you think andres cantor can crank out a "gooooooaaaallllllllllllll"....you never heard my dad yell when pele scored in varsity stadium, toronto in the mid-1970s.

we used to go trainspotting after school. he had a black leather binder crammed full of CP or CN engine numbers. my heart would flutter as we covertly pulled up behind some random building close to the railway tracks. first you could feel her. the slight tremors underfoot. and then the sight of spotlights in the distance; a green light, then anticipatory palpitations and, quick, the necessary preparations. highlighters uncapped. eyes peeled wide. would it be a number we hadn't seen? wiggling with excitement, my brother and i could hardly wait for the engine to pass. if it was a number we'd never seen, excessive hopping and hugging ensued. if it was a number we had seen before, we waved and waved and waved at the conductor.

and they always waved back.

even after school snacks of chocolate milk and bananas couldn't compare.

we saved old bread on top of the fridge and often went to the duck pond on the west side of high park.

[yup, there she is. from a jaguar to a pacer. go figure]

he loved open faced tomato sandwiches with mayonnaise and salt.

he loved the beatles, and elvis.

he made house calls to his patients in little italy, at a time when that was considered antiquated.

he created games for us all the time. shuff 'ha penny with quarters, scrambled word games, cycling events and soccer in the park.

but, it became clear that no-one was picking him for the team anymore.

in 1970, he was diagnosed with diabetes. so, perhaps i am projecting, but his twinkle diminished, as he commenced upon a path that would ultimately destroy him physically and mentally.

for years i witnessed his deterioration through a bubble of deception.

no-one explains to a child of 7 why your father's teeth are falling out at the table. you just feel a stone drop into your bowels and permanently settle in.

children know.

you do them an incredible diservice to lie, fib, and embellish the truth.

i don't know what's worse. people who "don't know what to say", and say nothing at all. people that claim, "well, things could be worse", or the green shit advocates who believe juice is a cure-all, no matter how many times i have tried to explain that broken kidney filters can't process anything anymore.

no, i think the worst are the people who spout bumper-sticker-esque platitudes adopted from some quickie weekend conference on "zen and positivity". "there's no right or wrong. it just is"...

similar to those that subscribe to the ridiculous, manipulative commercialism of books like "the secret". oooh, channel a house, and you will receive, based on the power of attraction. to suggest you can cure breast cancer by simply watching charlie chaplin movies, is not only ridiculous; but wildly irresponsible. are the rest of us simply inadequate in our determination?...or is it maybe, just possible, that it's all a bunch of hooey?

[discuss.]

you tread on thin ice by suggesting that those who live the hell of chronic illness; restriction, discomfort and isolation should perceive their situation as "good; it's just meant to be..."

what a convenient quote to casually toss around when you have zero context for the core of others' pain.

what insults me most about these statements is the inflexibility; the inhumanity. with no attachment, there comes no suffering. sure. (i studied my yoga!). but without attachment, there can be no love....so what's the point?

but now i just ignore this ignorance.

these recent letters from israel have revealed eerily similar disappointments, fears and frustrations between us.

but his sense of humor, despite a recent brush with death in '76-'77, remained intact. self-effacing; almost caustic. and introspection piercing a bulls eye every time.

he knew he was going to die.

"for myself, i am not afraid. this is not so important- as long as the time spent between now and then is joyous and happily". (1970)

"i cannot helping reacting totally emotionally to my situation. despite being aware that i ought to know better. i am not unhappy. i am not depressed". (1978)

for years he trudged through a disintegrating existence, much in the way i tolerate mine.

his addictions, have become my addictions. and his downward spiral is now my downward spiral.

but he never lost his joie de vivre. not once.

when you lose a parent, a part of you is annihilated forever. but, if there is a gift to be found in all of life's challenges, perhaps there's one right in front of my nose.

[december 13th, 1978]

i have finally found my soul mate.

one of the last times i saw him, i proudly showed off my "grease" double album. as i prattled on about the story, the characters and the musical numbers, he seemed nothing but enthralled. i suspect it was his last stand. and yet, he never let on.

all i saw was my daddy.

and all he saw was daddy's little girl.

shock the monkey

i was born in 1968. the year of the monkey.

i am very good at making monkey sounds. in fact, i love doing it.

[and you can clearly see the resemblance]

yesterday, k and i were driving, flipping between 2 sirius/xm stations bombarding us with juletide cheer. vic damone started crooning about "christmas in san francisco". riffing on chinatown, lychee nuts and barbeque pork...

say what?

so random, yet so apropo...

i'm entangled within a twisted logic to my life.

devolve, deteriorate, and slowly begin to die, before you can get help.

and make no mistake, i am now dying.

"hi, henriette. it's dr. dauer. your BUN is 78 (normal range 5-20) and your CREATININE is 4.5 (normal range 0.5-1.1). so we're going in the wrong direction. (sigh) continue to control your diet. i should see you more frequently now. call me if you start to feel much worse.

code for that other "d" word: dialysis.

[and yes, my doctor sighed]

it takes a lot to shock me. but that did.

it's that bodily jolt of electricity when the phone screams out in the silence of the night. limbs numb with fear. circuits sizzling with anticipatory images and fears.

tonight k. came home from costco with an electric blanket.

i used to mercilessly tease him for the kettle he once proudly presented upon my birthday.

["but, you like tea"]

but this gift brought tears to my eyes. for the man who remembered that i am now always cold.

and for 1987, when my mother bought me a free standing radiator. because i was always cold.

so now it's a race against time...

[hasn't it always been?]

-stress test: passed

-psych evaluation: passed

-mammogram: passed

-pap smear: passed

-neumovax vaccination: completed

-abdominal ultrasound: completed

and so next thursday the 16th, a team of medical professionals will evaluate whether or not i am fit for another kidney transplant.

then "blue shield" will take about a week and decide the very same thing.

[you know, i could bring some pretty ferocious cynical cracks right about now; but i'm tired...very tired]

and tonight, i am shocked into stoney silence. rigid in thought and frozen of mind. and don't ask about my heart. 

already diagnosed, but medication free; i love this 13 year old girl with all my heart.

she used to rewind peter gabriel's hit over and over and over again. she had just fallen in love. and she felt fanfuckingtastic.

and this chick. she rewinds brandon flowers over and over. is unquestionably in love. but is parched dry. tonight i am stripped of verbal eloquence; my vocabulary as barren as the shifting mounds of the sierra desert...

but, as far as i know, chris martin is cool with it...

"created, then drilled and invaded

if somebody made it
someone will mess it up

and you are not wrong to
ask who does this belong to
it belongs to all of us

you'll go backwards, but then
you'll go forwards again
you'll go backwards, but then
you'll go forwards"

[twisted logic.]

at least this monkey loves coldplay.

death and the maiden

yesterday, we saw jesus christ standing outside the beverly centre.

with his gaze rivaled only by charles manson, we stared, then collapsed into stitches; and i bossed my husband to encircle the mall in an attempt to digitalize this vision.

as we circled, i speculated as to why jesus would be hanging out, across from cedars-sinai hospital of all places.

of course, it was some passive aggressive posturing against anti-consumerism; but if his presence was meant to inspire "loving the lepers", it only succeeding in actually making me want to run away from him, and into the beverly centre.

[by, this point, he was walking away from his chosen corner and all i got was a great photo of a blurry honda civic.]

"well, maybe we'll see him at the soup plantation". cue: wife in a puddle of giggles.

[file it in the "only in l.a." folder.]

POST DINNER:

"why does brandon flowers always sound like he's crying?"

"he's just full of angst..."

"what the hell does he have to be anxious about?"

"well, his mother just died"

"well, at least he can roll around in all his money..."

"he said, if he wasn't a singer, he'd like to be a bus boy again. he really enjoys helping people..."

"hmmmm...rock star, bus boy, rock star, bus boy..."

o.k. donny osmond. brandon flowers. i guess i have a thing for mormon rock stars.

go figure.

but i have a bigger thing for my husband who never fails to make me laugh...

and then it was bono, with his recent back surgery.

"he probably broke his back carrying all his money around"...

and i fall for it every time.

but, i love our heated discourses; our winding, cerebral paths of adventure. but, bono and U2 have done much. is it their responsibility? they are self-made rock gods; and if a twinge of guilt tickled their souls occasionally, who would notice if they never acted?

if i had ever found a measure of fame in this jungle town, my goal had always been to raise awareness for organ donation.

who remembers bob barker reminding all of us at the end of "the price is right", to spay and neuter your pets?

and the countless "golden girls" episodes knowing betty white had forced her hand and rescue dogs bounded throughout frame.

amen.

george lopez. unfortunately, the butt of horrific jokes regarding his recent divorce. "does she want her kidney back?"...everyone's a comedian...

[someone. please. once and for all. explain to me WHY this is funny...!]

but, why doesn't he take ONE MINUTE at the end of every show to remind his audience to sign their donor cards? what a coveted position in which he stands. and he wastes it. utterly.

and as we leisurely drove home along sunset blvd., it struck me how many celebrities had crossed our paths in this area:

-saying hello to james coburn and quentin tarantino in the elevator at cedars-sinai.

-running into richard dreyfuss at a bookstore in the beverly centre.

-getting cut off by christina applegate in a white BMW outside the formosa.

-realizing renee zellweger was staring at me in kinko's while making a calender.

-"how ya doing" with jeff bridges in the parking lot at blockbuster on sunset.

and just a little further into hollywood, the wilshire ebell, where ms. henriette pulled out all the stops for one jim carrey.

[yeah, he totally flirted with me, dudes...]

THEY'RE JUST HERE. [and, why do we care?]

the famous, the rich, the healthy.

the untouchables. 2010.

searing hot, my heart ached to the realization it was exactly 23 years ago that i was being evaluated for my mother's kidney.

1987.

christmas has always been frought with melancholy memories and utter confusion for me. fine. call me a grinch. lord, knows my husband does.

not only did i lose my dad, smack dab in the middle on december 13th, but in 1987, i was told i had 8% kidney function on december 3rd. official meeting in cardella's office. travel to denmark denied. dialysis to begin on the 11th.

there's an perennial avalanche blocking my path to juletide enjoyment. it's there every year, and there's never a detour. can't go around and can't go through. so every year, i hack away with my proverbial pick, and surmount the insurmountable. but, by the time i do, the season is usually over.

"joy to the world?" sigh. don't quite know how to respond...

monday, i was determined to bulldoze through some semblance of a day. (see: http://hennybird.blogspot.com/2010/12/scenes-from-normal-life-enchanted.html ). but after 6 errands, i found myself internally screaming at the USPS employee.

["hurry up, hurry up, hurry up..."]

maybe, if your nails weren't so crazy long, you could move a little faster...

but, they were festive (and tacky);  and i was grumpy and in pain. a stomach fisted into acrimonious cramping. i slumped down in front of our post office box. and took a breath. and then another. and then another.

i don't care who looks at me. please. i'm so past that.

[you did it, h. 6 errands. almost home. almost home. almost home...]

but this level of exhaustion and nausea was unfamiliar; uncharted.

the day had exhilarated. i was independently driving. window down. warm california air caressing. my sense memory kicked in at warp speed, and i had the vaguest recollection of being...happy?

cut to: yesterday.

the neumovax shot primary on the agenda.

blood work, neumovax and ultimately, epogin...

with a hemoglobin of 7.9, i am well below low normal of 10/11.

[the new normal]

epogin is like a knife in your shoulder that they just keep twisting, and twisting and twisting...and this was a LONG one...

[f. me]

but here's the good news: i passed the 5 hour stress test of my heart. and then dr. dauer (I LUV U, 4 EVER) looked up the analysis of my psych evaluation. apparently, i am cleared. my overdose was not an attempt at suicide, and i have my addiction under control.

ah, to live down a brush with 51-50...

another notch in my belt, kids...and i wear it with pride...

creatinine 3.9

"have you been throwing up?"

"once"

the highest creatinine i've had in 23 years. the maiden who feels like death warmed over, is validated.

and so it all makes sense. but makes no sense at all...

i wish i was famous.

red carpets churn my stomach. designer gowns leave me unimpressed. and gift bags deserve to be tossed out with the trash.

but...

i feel so helpless. if you were in that conference room with me on november 19th, you would have seen why. faces drawn; tired, scared, etched in pain. desperate for life.

if i was famous, all the stops would be pulled out, and no stone would be left unturned...

but for now, all i can do is blog, and yell, and mouth off.

[of which i am quite good, btw]

sign your donor cards. have conversations. get informed. make donations. i hate sounding like a PSA, but i would hate myself more if i never said anything at all...

and wouldn't saving a life be better than another shirt?

[f. yeah.]

merry christmas.

scenes from a normal life: enchanted

last night, we bundled up in bed together, moody folk in need of a lift.

i had taped "enchanted", starring amy adams, james marsden and partick dempsey. it's always been difficult to convince k. to embrace animation, despite it's fleeting involvement in this film. but, it was cute. amy was delightful, patrick was dreamy and james was an amusing caricature.

giselle (amy adams) believes she has found her one true love, edward; one mere day after meeting. edward (james marsden) is superficially suave, vain and aesthetically perfect. but beneath giselle's adorable veneer, a dormant craving for a deeper connection begins to rumble. then roar. unconsciously, it begs for awakening.

and with a similar, searing pain, i realized i knew all of the leads.

i had worked with james on an episode of a ridiculous series entitled "boogie's diner".

i had worked with patrick on a miniseries entitled "jfk: reckless youth". originally, i was assigned a single line. a fan of jfk, craving his autograph.

[type cast, indeed. i am the consummate groupie...bflo. hollah.]

but, for some inexplicable reason, director harry winer was besotted with me. my one line turned into four and he could never get over that claire forlani was the lead and not me.

[cue: arm thrown up against forehead. deep sigh]

and amy. a friend of bff, m, i have met at parties. [so l.a.] so, who you know. but who i know now, does me no good anymore.

it's what i need.

["hey, buddy, can you spare a kidney?"]

my heart was in spasm, but it was nothing compared to the aching waves that persisted.

today, i awoke to uncharted discomfort. listless cramps encasing me whole.

end stage renal failure: characterized by anorexia, edema, hypertension, nausea.

grade: F

"Our kidneys, we have two usually, have many functions. They remove waste products from the blood and also remove excess fluid. They do this by acting as a filter, thus producing urine. They also help control our blood pressure, the level of minerals in our bones and the production of red blood cells."

i have no appetite. i eat with no enthusiasm. and my bp SUX.

i know i have to eat, but nausea dictates. sneaks up from behind and throttles. i'm spent. edema keeps pounds way above my normal weight. and my hemoglobin infiltrates heavily like pounds of undigested stew... 

[there's a marked difference between confidence and arrogance. but, that's not on the agenda tonight.]

the line between reality and cynicism, even more subtle. like sea salt and kosher salt, we pretentiously roll it around on our tongues, but are never entirely sure which tastes better...

[ah, california sands swirl ferociously by. rub your eyes with defiant fists.]

[can you see?]

credit cards and blackberrys. ipads and and kindles and bmw's, oh, my!

it's not what i see. and it's not what i want.

this is what i see. beautiful, underrated boredom.

unremarkable. 

glorious.

giselle plowed through her lost days in new york, searching desperately for her prince charming.

when, he finally arrived, they were no longer in tune; discordant.

the desert dust briefly clouds your judgement, but the southwest sun will always shine a spotlight of truth. 

poor giselle.


the truth is, there is no prince charming. we all know that. in fact, i wouldn't have it any other way.


do i hate being sick?


do i hate being dependent?

do i hate being disabled? of course.


but, while giselle prances around in a puffy ball gown, searching for the intangible, i know my joys lie firmly at home.


the monotony of produce selection. a bank deposit. and dollar store goodies...i'll take it.

enchanted.

the roller coaster of hen

one of the requirements necessary to be "approved" for a kidney transplant in the united states of america is a mandatory psych evaluation.

[no approval necessary in "oh, canada, eh",  you ridiculous, puritan talking heads...]

good times.

so, tuesday morning, i dragged this emasculated frame behind the wheel, and drove my way back down to my reluctant home away from home...

cedars-sinai medical centre.

and so began the interview of a lifetime.

i am a spectacular actress. 

[yeah, i am...]

and nothing, non, mon ami, NOTHING was going to prevent me from getting approval for a new lease on life.

challenge this, chickie...

how many heads do a double take when they hear this kidney has lasted nearly 23 years?

don't throw me a sword, babe, for i will accept your challenge and fence you down. downtown.

let the games begin...

perhaps it is appropriate i am currently immersed in mccarthy's "the road". a world of gray. desperation. a post-apocalyptic hell.

[is life worth it?]

as the interview dragged on, to my mind, it became redundant.

a woman trained as a doctor; a psychiatrist, who has less than zero life experience with which to truly identify with me. textbooks are great, but they barely ever apply.

LISTEN and learn.

at one point, i wanted to bring full on henriette. try this on for size, doc...

live one week of your life, essentially confined to bed/ your home. unable to drive long distances. no work. no volunteering. no exercise. little ability to focus, remember...

then get back to me.

and then she asked, "so you've already been through a transplant...why would you want to go through this again?"...

[hold that thought.]

wednesday, we had we had the greatest day planned. 

bff, m, was going to take our annual christmas card photo, and then we were off to winnetka for dinner with a and e; friends recently home from adventures down under.

and then she hit.

around 1 pm, a migraine took me down like the titanic's infamous iceberg. ominous. unanticipated. and ultimately, decimating.

unforgiving. unrelenting. 

i don't want to hear, "well, it's only the second migraine you've had in 6 months"...

[have you ever had a migraine?]

and so another great day blew away like desert residue upon the freeway...noticed, but unremarkable...

despite the promise of imitrex and it's desperate downing, i writhed for 24 hours in a land of unrelenting pain.

waves of intolerable, followed by mild retraction.

["oh, thank god...breathe, breathe, breathe..."]

minute by minute you exist.

like mccarthy's world; poetic phrases deserving of reflection, juxtaposed against stark facts, mirroring the bleak landscape father and son traverse.

i keep hearing that "this will all be over soon", but much like the ashen sun they can no longer see, i strain, scanning for the vaguest suggestion of light.

"everything happens for a reason". don't want to hear it.

"there's always a silver lining". don't want to hear it.

"it's god's plan". don't want to hear it.

"it's just money". definitely don't want to hear it.

yesterday, was the first day i had been out since tuesday. this shackled soul stirred by the sound of our station wagon starting up. sweater pulled tight. ah, california in december...were those red neon letters a mirage?

TARGET.

and so we laughed and laughed.

but today, an unceasing undertow of nausea unceremoniously stranded me. shipwrecked to the couch.

[no salt water, please. just perrier]

and i was pissed. and my heart plummeted to the reality i live.

["make your plans, chickie, and i will laugh, laugh, laugh..."]

are you still holding that thought?

and then she asked, "so you've already been through a transplant...why would you want to go through this again?"...

you've heard of the evil eye? well, i gave her the evil mind, body and soul.

years and years ago, my admittedly witty life partner coined a relationship with me "the roller coaster of hen"... "she's up, she's down. i'm so happy...oh my god, i'll totally fight you..."

[trust me, i don't do it justice.]

and in mentally taking her down, i realized life is a roller coaster. once you're on board, there is no warning, no siren, no possible evacuation. you're up. you're down. and even the safety bar won't make you feel secure.

so, i gave her my bullshit answer where i quoted gloria steinem. "even if i'm 90 years old, with one eye working, i want to be around to see what happens."

but the truth is, it wasn't bullshit.

there are days like this.

and there are days like this.

and i want to be around for all of them.

fast times at cedars high

today i was at cedars-sinai for a "stress test".

there's a twisted irony about it all.

i was in full on panic mode. this gal is not a fan of the unknown. lay it on me, mofo...THEN, i can deal.

when i arrived at cedars, after driving like the baddest biddy in beverly hills, i parked in the beverly centre; and crossed over into the imaging centre.

i always feel so glamorous being treating here...so "beverly hills, 90210". remember "ah-ndrea" had her baby, hannah, here? ah, the dreams i have fulfilled! i am too cool for school...

and so it went.

registration. pulling out the list of now (only 20!) meds i am on. insurance card. wristband.

though, on a voraciously narcissistic side note, my registration attendant thought i was 25...

fuck, yeah. i'll take it.

and so i waited. to get my heart scanned. IV in. injected with radioactive dye, i laughed inwardly at the angst my friends feel over a can of coke, or red meat...

what was swirling through my veins?

though freezing cold, the ridiculous comfort i felt confused this broken soul. i'm so used to these tests. used to the pain of the IV entering my vein. used to the gowns, the questions, the blood draws and the protocol.

doesn't make it any more fun, though...

then there was two, 10 minute heart scans, and then i moved over to THE TREADMILL. once upon a time, i ran 5 miles a day. that machine left me with a painful ache that never dissipated...

[goddamn, i miss my life.]

the other night, kevin and i watched "the road". i cheated as i was 1/3 of the way through cormac mccarthy's novel. i never like to watch a film before i have read the novel.

it's not for the faint of heart. it charts the father/son journey through a post apocalyptic world as they attempt to find better conditions in the south.

at one point, i turned to kevin and asked, "would you want to live like that?"

and so it raised the question of quality of life.

[don't look at me. i'm just a canuck with a big mouth, no kidneys, and a passion for life...]

but what would you put up with?

in this novel/film and margaret atwood's latest musings on a post-apocalyptic world ("oryx and crake" and "the year of the flood"), they challenge the elasticity of our limits.

what would make you snap?

those three novels paint; sculpt portraits of the ferocious will to live that exists within the human condition.

i often feel trapped. my condition dictates a life of drugs and transplanted organs.

i was slightly cynical in my last post. i am grateful for much, but sometimes, sometimes...

much like atwood's books where an entirely new language is created, i feel like i live in the land of the undiscovered; unconquered.

never mind the forest for the trees, where is the goddamn country?

but, it's here where it's always been. within me.

i can do this. but, do i want to?

["i never promised you a rose garden"]

and as i climbed into our station wagon, 5 hours later, i knew the answer was "yes"...

and then brandon flowers serenaded me all the way home...

ahhh...life ain't so bad.