what, me worry?

there's a kind of depression, soaked in guilt, that follows post-mortem any heightened moment.

exhilaration and cheers. irish jig and tears. and suddenly, you're riding an unforgiving denoument.

[ouch.]

yes, k and i are a blood match. yes, we are a negative cross match. that's all good.

but in 3 hours, my potential savior will be walking the halls of the steven spielberg pediatric research building (transplant centre) @ cedars-sinai medical centre, and begin to be tested within an inch of his life. the first time he's had an IV. radioactive dye through his veins. the first time he's worn a hospital gown...

[impossible to believe. feels like valentino to me.]

all for me.

can you call another person your savior?

there are no guarantees. and in that swamp of uncertainty, i frantically tread. and periodically sink.

cut to 1988. thriving kidney. drugged within an inch of my life. and a face swollen up to the size of a buick.

vanity? perhaps. frustration? definitely.

tonight i was flipping through old photos from '07 and back, thinking, DAMN. my good health radiated from the screen like chernobyl's aftermath. radiant. glowing. indestructible.

[gimme. gimme. gimme.]

physically, i am bound and gagged. the other day, as i was blowing my nose, tossing bloody, red tissues aside, i breezed over to hubby, "man, i have every symptom of renal failure"...

and he countered, "that's because you have renal failure".

touche, my love, touche.

so, here we go...

january 26th was kevin's birthday. f*#k me if i wasn't going to pull it together for him.

divine sushi and wine. then a gaggle of girls descended. random, for sure. but, their "leader" cautiously approached and drooled over hubby with the enthusiasm of head cheerleader at friday night's game.

"OMG...we just wanted to tell you guys, like, you guys are so, like, totally adorable..."

[jason statham, eat your heart out]

but, maybe, just maybe, they had picked up on the day's unique magic.

38 years for my man. and 23 years for my kidney. and it's last.

it's a strange thing saying goodbye to something that was never really yours. on loan, but never promised to be returned. it's premature death a certainty. but, my death?...

[btw, listening to radiohead at 4 am is dicey at best]

so, we hit tiffany's and fortuitously stumbled upon the "bean" line...

that's kidney bean, ya'll.

and in my gush of verbosity, our salesman sooner than not, was privy to the excitement behind our purchase. "the "bean" necklace. he's donating a kidney to me. i have a rejecting kidney." blah, be de blah blah blah...

[check it out]

turns out, this gentleman's dad had died of renal failure. none of his children, including john, our salesman, were a match. and he wanted to follow our story...

[too close for comfort, indeed]

it's easy to imagine a fairy tale ending. it's how we born of the baby boomer generation have been brainwashed. propaganda of the lyrical kind. poofy dresses and swords askew.

but in this day and age, a princess is marinated in immunosuppressives and hypertensives before she can don that shimmering gown.

but, that's ok.

because her prince told her tonight, he doesn't care if her face is the size of buick.

he just wants her out of bed 24/7. he wants her nausea to end. her headaches to evaporate. her nails to heal. her nose to stop bleeding. her up and running again. and dancing. and living.

there may be no fairy tale ending. but i'm still living a fairy tale every day.

[i love you, k]

a match made in heaven

there once was a red headed girl
whose kidneys began to unfurl
they wasted away
but mum saved the day
her oyster of health my new pearl

chronic illness is kind of a hell
bound and gagged and forced cruelly to dwell
but when love's in your life
it tempers the strife
casting promise and hope like a spell

no longer a bad sitcom joke
my kidney's a match with some bloke
expansively wide
his heart is my guide

the love of my life...yeah, i'm stoked.

great expectations

last night's moment of perfection on "family guy"...

FACEBOOK STATUS: "after a long battle with cancer, my aunt has finally succumbed to cancer"...

joyce likes this!

[this is the world we live in]

be forewarned. i am in a hell of a bitchy mood. end stage renal failure is kicking me to the curb, and there's not much here except cigarette butts; crispy, dead leaves, and dried up vomit.

yesterday, i fell asleep 3 times. in the morning around 10:30 am for 3 hours, that afternoon while watching a movie, and then after dinner...

[i'm sad.]

this christmas, i hung two strands of holidays cards across our ceiling beams. with conservatively over 50+ cards, i have decided to keep them up for a while. they make me happy.

but, in my darkest moments, i turn some of these cards over and over in my hand; looking for some heartfelt effort. most mass-produced, sent "with love" to 500 of their closest friends! sure, i'm wary of organized religion, but a christmas card blank of any personalization, is sacrilegious.

what's the point?

even the hand written comments, clearly churned out on auto pilot, feel insulting.

"hope you are well! hope 2010 was terrific!"

[ugh. do you even know who you are writing to?]

i've a heart soaked in sadness. marinating in a disconnect that the "technological age" continues to enhance.

[voice mail, texting, e-mail, facebook, twitter...]

i fear the more technologically advanced our minds become; the more rapidly our souls devolve.

look. my nit-picking may just be the rearing of an ugly medusa head of snakes, but let me play the sick card. just for a moment.

the truth is, these cards are more for the sender to chalk up another proverbial pat on the back. another successful holiday tradition fulfilled to round out their norman rockwell holiday experience.

akin to the "racking up" of friends on facebook.

[it's all i can do to delete more people.]

look, your super-ego has gone haywire if you think 458 people give a shit about you.

one of the wisest words i ever heard my father claim was, "you can count your true friends on ONE hand".

i truly have a love/hate relationship with facebook. as i attempt to whittle down my "friend" list from my previous 340 to the current 199, i'm still using a certain litmus test. would i be able to sit down with this person for one hour, comfortably, and have a conversation?

the main reason i use facebook, is to link my blog to it. back in feb '08, when diagnosed with chronic kidney rejection, i was overwhelmed by the amount of support i initially received. so uberhubby ventured forth, and created for his wife, the greatest gift since my mother's kidney: my very own blog.

[henny's got a cyber diary...watch out!]

providing me with the opportunity to share...but, would anyone care?

and i realized, even if it was only me that cared, it didn't matter. it was necessary for me to survive.

"high aspirations, low expectations". an actor i starred with, in an MOW, back in toronto, gave me the greatest advice before i embarked unto la-la land...

this guy, d, got it. to expect, is to be disappointed. to aspire, is to flourish and dream...

and so this is partly why i have always been such an intense advocate of honesty. i grew up in a home drenched in pretense. after my father's death at age 10; i recall an evening 2 years later, having barely entered those volatile, teen years. my emotions surely an unfettered, pinball game. as fresh as the day he died, my heart suddenly cramped and imploded with deep sadness. as i mentioned a few blogs back, grief is no linear process, and every little girl is entitled to mourn her father...whenever.

[even today.]

but, in my house, i was told to shush, pull myself together, and threatened with therapy if i couldn't get myself under control. a 12 year old girl. who had just lost her soul mate.

[sniff, sniff, snot, snot...silence.]

but, thank god, this 12 year old never subscribed to the idea that talking weather would ever be more satisfying than exploring the natural grieving process of a preteen. one bad day, and i was suddenly off-balance, lying fetal on the floor. but, i thrilled to the emotions that flowed thickly through my veins, as deeply now as the toxins soaking this 42 year-old rag doll.

so, i learned to expect superficiality and a projected veneer of what life never is.

but, i aspired to something greater for myself.

with my therapist, i have found glimmers of this state of mind. he occasionally drips gems of wisdom i clutch within the palm of my hand and hold up to the light for reflection.

and the greatest of these is the peanut butter and jelly sandwich.

sure. argue semantics with me. there's peanut butter and jam. peanut butter and honey. even peanut butter and nutella. and then the infamous choice of drug-addicted, rock stars; fried peanut butter and banana.

like expectation and disappointment, you can't have one without the other.

here's the truth. i feel like an orphan.

despite the numerous times i have asked my mother to read my blog; participate in the hell that has been our life over the last 3 years, we have barely heard from her. so, when your own parent vaporizes from your existence, where lies your right to expect anything else from anyone?

this is not a crucifixion...don't brand me.

[trust me, she will never read this.]

but, it's my life. my pain. and my blog.

[don't like it? don't read it.. or write your own f-ing blog.]

every time i embrace great expectations; i am disappointed. i still haven't learned.

but, still i aspire.

unrealistic or not. i aspire.

a few years ago, i became addicted to yoga and attempted to embrace the philosophy of "zero attachment". challenging to say the least. the basic principle being, "honor your body". zero tolerance of attachment. but when it came to applying that same philosophy to relationships, i could never see the forest for the trees.

how. how can you love wholly, deeply, without attachment?

what's the point?

why go through life a poking stick distance away from love, affection and devotion?

i'm not speaking of your house, your clothes, your car...please. who cares? it's a sad person who cries over the scratch on his BMW...

but life is meaningless without the magical moments of connection.

and health. well, sorry. you suck big balls if you don't get the gift that so many of us take for granted.

and i don't feel sorry for you, not one, little bit. i just don't.

so when i hear my mother's eyes glaze over on the phone, and the tap, tap, tap of her fingers on the phone....sure, my heart sinks.

but, tonight. tonight everything changed.

creatinine: 4.2 (0.5-1.2)
BUN: 58 (7-20)
hemoglobin: 9 1/2 (11-20)
CO2:18 (35-45)

"we may have to think about earlier dialysis. i hope not. but let me see you sometime this week..."...

and a part of me just died.

yes, the "d" word. [not, divorce, folks]

i know. i know i am shutting down.

but, somehow, someway i believed it might last just a little bit longer...

but now, i no longer expect much. i'm not cynical. just realistic.

she's done.

my precious, magical organ. who was never really mine to begin with. only borrowed with love from the woman who gave birth to me...

and so now, i pray. i am on my knees. begging for this kidney to be a match.

i fairly lost my mind when dr. dauer suggested dialysis.

[no, no, no, no, no...]

nope. nada. not on the agenda. can't do it.

so despite it all, my expectations are great.

can pip, estella, miss havisham...any of them help me through?

great expectations.

they live in my heart; but can they live in a soul?

in respect of MLK, jr. day: '“In the End, we will remember not the words of our enemies, but the silence of our friends.”

smile like you mean it (pt. II)

the cedars-sinai elevator.

sexy, eh?

and so it goes.

goddamn, this sucks. my heart aches. my body flails. and i'm left behind...

lost in the world of illness...

never feeling good. never feeling strong.

and so it goes.

life has a way of kicking your ass...and mine's been slapped more than a few times.

more blood work. more tests. when is enough?

and so we wait.

just a few more days, and kevin might be a match.

"heaven ain't close in a place like this..."

hockey night in canada

"he shoots, he scores..."

has there ever been a more quintessentially canadian phrase?

whether or not a canuck plays the game of hockey, it exists deeply within every canadian's subconcious.

so when my friend, s, called and suggested k and i hit "canada night" at staples, it was a no-brainer.

you can't really call yourself a canadian if you've never taped up a stick, lay down gloves to mark off the net's boundaries, and yelled "car" every time an intrusive vehicle passed down your residential road rink.

i played goalie in grade 4 and 5. truthfully, by default. i was a crap skater. i had never enjoyed the privilege of the skating lessons my private school mates jammed into their busy schedules. but, i was game. to this day, 34 years later, one of my proudest moments remains catching mr. hagerman's slamming slapshot. i couldn't feel my fingers for a week, but for a brief time, i was the coolest girl in school.

[maybe i was no crosby, but i f-ing saved the day]

so we hit staples with the anticipation of a compulsive gambler checking his lottery ticket numbers or the bingo whore praying for "B-9" to complete her row.

[bring it, toronto.]

"hockey night in canada". a part of me withered away when i heard the CBC obliterated the theme song. with the opening notes i'm transported back to age 7. holed up with daddy in his man cave, desperately trying to keep my eyes open past the second period. anything, to be with him. a delicious honor to share in your parent's passion.

his energy infectious. howls and hoots. embracing his adopted country's home team with the enthusiasm of a child on christmas morning.

a reborn canadian forever.

and so last night, i held the requisite brew (or two) in hand, mowed down on over- salted popcorn and cheered for the leafs from the bowels of my throat and the depths of my heart.

and suddenly, i was 7 years old.

the smell of the ice. 2 minutes for hooking (always funny). the constant chant of "leafs suck"...and the fights. oh, the fights.

totally awesome, dude.

hey, our tv has probably been on ESPN less nights than lindsay lohan has been sober;  but live nostalgia is one of the great equalizers.

ah, but, i knew i would pay for it. alcohol, salt, unbridled energy. not friends of the failing kidney.

so. was it worth it?

"quality time" is one of those cringe -inducing statements that was introduced in the hyper-politically correct early 90's. to me, it always smacked of divorced parents desperately justifying their failures. casually tossing "quality time" around like a penny into a fountain. good intentions, but no true commitment.

"one day a week is fine. as long as it's quality time...".

really? really.

take it from someone who's lived it. it's a load of crap.

no kid wants to see their parent one day a week, no matter what they say.

today, i roused myself after 3 pm. not unusual for this kidney-less woman. 10-12 hours minimum sleep required. it was all i could do to peel open my eyelids by 4 pm.

[the devil went down to l.a....never mind, georgia]

as my mind replayed the explosive night, an amused smile tickled my lips, promptly wiped clean by a body most sluggish and weak.

so. quality time. is it legitimate?

i don't see my family that often. i don't see my friends that often. i don't visit denmark, toronto, tennessee, winnipeg, boston, israel, or vancouver that often. 'cause i don't feel good that often.

[but when i do, i exhilarate in those briefest of moments.]

moments interesting and mundane. challenging and breezy. exciting and boring. bittersweet, yet loving.

for when you lie in bed, hour after hour; day after day, those briefest of moments become qualitative gems.

and so, with lowered head i concede.

for in two hours, i had more fun than i had had in weeks. only to be followed by a damaged and drained tuesday afternoon...sigh.

so. was it worth it?

i recently watched an HBO movie entitled "you don't know jack", detailing the life and trials of jack kevorkian. played by al pacino, who has definitively left his "whoo-ah" days of acting behind. in fact, i could do nothing but empatisize with these individuals so desperate to die. lou gehrig's disease at 30. alzheimer's at 50.

[is there a new word for unfair?]

i don't want to talk god or politics or state or church. all i know is that i identified with their suffering and thanked god that i still have, even the briefest of moments of happiness.

i don't want to die. but, i don't want to suffer the rest of my life. i want to live. and live well.

"living well is the best revenge..."
[is that code for "quality time?"]

so. was it worth it?

well. the leafs brought it home, 3-2.

what do you think?

lucky there's a family guy...

when kevin announced tonight's "family guy" detailed peter's need for a kidney transplant, my proverbial fists emerged. poised and ready.

insurrection of hackles...commence.

not seconds later, a background rerun of "frasier" found roz wining about the lame ass psa's they had to lay down: "i don't feel good ; i need a new kidney"....

cue laughter.

ouch. uncanny.

i will never understand why the desperate need for organs remains untouchable fodder for flaccid sitcom humor.

this is how funny organ donation is. not only have i blocked a man from india who straight up offered me his kidney on my blog, i have also had interest from someone in iran.

yeah, there's slap yer knee, wipe the tears from your eyes, comedy for you.

so i sat, stiffly positioned on the edge of our couch, as the episode began.

peter sucks back his first "red bull" and a spot on, brilliant parody of madonna's "ray of light" video explodes as he falsettos, "and i feeeeeel, like i just got home..."

a wonderfully subversive commentary unfolds on those hypocrites who only eat organic, but bow head to the white stuff. it begins with his wired purchase of a cow for "daily fresh milk!" and ends with his diagnosis of complete renal failure.

cue: stiffening of muscles. pursing of lips. cocking of head.

[wait for it. wait for it...]

so this animated, pseudo-icon lies bedridden, oxygen tubes jammed up his nose, as his doctor explains that it may take "months" before he can get a kidney.

sigh.

cringe worthy, indeed.

don't call me tipper gore. there is no bigger advocate of freedom of speech than myself. i'm the one that has flapped to the world about everything from my overdose to our financial straits. so. yeah. i wear my heart on my sleeve.

[bono's got nothing on me...]

and i have have always loved "family guy" because seth macfarlane takes no prisoners. it's equal opportunity discrimination. this guy gets it.

sitting on the fence gives you nothing but splinters.

the only way to foster change is through discussion. and discussion can only flower through the pollination of ideas. but that can be an icky, sticky mess.

and most folk just don't wanna git dem hands dirty...

but, honestly. "months" before he can get a kidney? surely with all of macfarlane's millions he must employ a research team. one hit on google would reveal it's typically years and years before anyone registered on UNOS (including myself) will likely receive a cadaver.

[one word..."whoops"...]

when the soap box upon which you stand and spew is built upon pick up sticks, it's impossible to sustain verbal diarrhea without collapsing into a big pile of shit. game over.

[and believe me, i am all too familiar with verbal diarrhea...the literal and figurative kind.]

and maybe this is eye-rolling-inducing-babble. it is "just" a cartoon after all...

there's a "formula" for comedy. tragedy plus time....ah, i was never very good at math...but, comedy must lie with truth. strange bedfellows of the necessary kind.

and that's why i still had a laugh.

peter's doctor explains that until he receives a kidney, he must go on dialysis. 2 hours a day, 3 days a week. peter's squirms his protest and asks for the alternative.

cut to: a colt 45 aimed at his head.

ok. now, that's funny.

it's funny, 'cause it's true.

the protocol of the transplant

is there ever an appropriate time to thank the nazis?

in spite of their occupation of the netherlands, dr. willem kolff, a dutch physician, was able to successfully treat a 67 year old woman, in 1945, who was in an uremic coma. after using his dialyzer on her for 11 hours, she lived another 7 years. she was the first successful dialysis patient.

so here's a half heil salute to dr.kolff who was able to create something so medically advanced under undoubtedly tense and terrifying conditions. BRAVO.

an interesting tidbit i thought i would share. although the insistently zen portion of my program would like to focus on the task at hand.

["long day's journey into kidney"]

i had a shit load of blood work done at the end of november. what we have now learned from those results is somewhat promising. because i have never gone off my immunosuppressives, i have accumulated very low antibodies. factors that could increase your antibodies would be blood transfusions (i've had 3), being pregnant (never been) and going off your immunosuppressives. all these factors can potentially increase your antibodies, and i would have a slimmer chance at accepting a new organ.

but, like i said. they are low. whew. a great first step.

kevin and i know our blood types should be compatible, so, over the next 7 days, the fine folk at cedars, will examine our vials, compare data and eventually calculate whether we are a negative crossmatch (yes!) or a positive cross match (no. no. no.)

and cedars-sinai is one of the few hospitals in the world that offers a program in antibody treatment. on or off dialysis. for me it would be a 6 hour iv treatment with rituxan. the treatment lowers antibodies and neutralizes their ability to attack the new kidney.

essentially, with CROSSMATCHING, they want to see if your cells fight...golly gee, does that make me want to laugh...

i can actually hear arguing between our cells. right now. loudly. in some test tube. in a darkened cedars-sinai laboratory...

["Oh, Kevin!...Sweetheart, just leave it there...what are you doing with that?...well, we can't afford that...Oh, Kevin!"]

in less than 2 weeks we will know if we are a match.

then there is stage 3: TISSUE MATCHING. this involves antigens. the best score you can get is 6 out of 6. and it goes downhill from 5 to 1. 6 out of 6 is the single best tissue match that can occur between any donor and recipient. but if your donor is a 4-4 with you, you still have a better chance at surviving than if it was from a cadaver. living donor is always best.


and that's what uberhubby is. my living donor.

[dr. cardella's words come back to haunt me]

"kidney disease is a life long issue..."

indeed, the most difficult and surreal issues swirl around me daily; theatening to tsunami our bubble of hope.

since returning from my glorious birthday week with friends in toronto, my health quickly spiraled out of control. and my energy level imploded.

i am sick. and with startling simplicity i finally understood; my kidney is nearly dead. i need a transplant.

[believe me, there's fodder for more than a few sleepless nights here.]

i am so tired of shuffling around this house; crashing in this bed all. day. long.

missing my independence, as i can no longer drive.

nauseous, dry heaving, barely able to eat...

no work possible. just my greatest of efforts to keep some semblance of calm, joy, and dare i say, happiness between me and my man and my hound.

i have missed out on so much LIFE over the last 2 years; it fairly breaks my heart. is it my life's path to have brief moments of happiness only to be drowned in the despair of illness and it's harness? hardly seems fair. it pains me to witness kevin's stress over our mounting bills, over my daily struggles, and the minor maladies he now suffers from.

we do try to take this one day at a time. and not worry about the years it will take us to catch up on medical bills.

truth is, we're terrified. waiting for that one call. those five powerful words...

"you are a great match".

it will be a great, hopeful moment, but we'll be guarded.

we will also be cautiously optimistic and strong.

because with so much at stake, it is impossible to be casual about the potential outcome. look, there are no guarantees...

in fact, if he isn't a match...well, if he isn't a match...sigh...i guess if he really isn't a match...

i suppose that 1945 dialyzer won't be transatlantic much longer...

it's now or dialysis. and that's the protocol of this transplant.