teardrops on my kidney

i feel regret over my last post.

my creatinine was lower, but still not normal. and my BUN was horrific.

creatinines often fluctuate all over the map, and it does not take away from how i feel.

i'm still at 10% kidney function, suffer multiple side effects from my meds, and dream of the new kidney that will give me energy, strength and a new life.

it's a double edged sword. the greater wish is the quick deterioration of my kidney so a transplant can occur. but, there may be dialysis. there may be rejection. so, do i rejoice in results that prolong the life of this damaged organ?

no.

i am exhausted by it all.

the support of my friends filled me simultaneously with joy and broke my heart.

because this kidney is on it's way out.

tonight i lie in bed, sick, after flying on 2 flights to winnipeg. i almost always catch something in that recycled air.

["this is your life"]

but, i love my friends. they are my family. and i would be lost without their support.

was there a christmas miracle? no. but, there was love. you guys gave me love.

and this kidney of mine cherishes every shiny pearl...

miracle on 3rd street

i'm so confused.

my creatinine was 2.2 (normal range 0.5-1.4); down from 2.9/3.3.

but, my BUN was 52 (normal range 7-20)

"BUN is a marker for other nitrogenous waste. Thus, when renal failure leads to a buildup of urea and other nitrogenous wastes (uremia), an individual may suffer neurological disturbances such as altered cognitive function (encephalopathy), impaired taste (dysgeusia) or loss of appetite (anorexia). The individual may also suffer from nausea and vomiting, or bleeding from dysfunctional platelets."

my iron was normal.

my thyroid was normal.

yes, i feel like shit, but this kidney is hanging in there, despite all the side effects.

yes. i have certain challenges; adversity, catastrophic.

but, there was a gasp of happiness.

oh, yes, i'll take this miracle.

2009: my space odyssey

kubrick's film was an exploration of man vs. technology; a groundbreaking cinematic journey of human evolution. innovative. stimulating. thought-provoking.

much like the journey i find myself traveling.

when i saw dr. dauer at cedars-sinai this morning, i was exhausted. a 9:15 am appointment never bodes well with this night owl. but, i was invigorated by my intentions. it was time to lay it all out on the examining table.

now hear this.

i am often exhausted beyond comprehension. unable to work out much, do many errands, and certainly no longer hold down a job. i told him about my constant headaches, insomnia, lethargy, nausea and tremors. and i asked. were we just waiting? waiting to get worse?

["oh, don't you put me on the back burner"]

my blood pressure was 140/90, so we changed my drugs once again.

my hemoglobin was 9.5 (low end normal 12), so i had a procrit shot. i may need these more frequently.

i had an H1N1 vaccine.

when my CBC comes back, he will evaluate my iron level, and there may be more we can do to help my energy.

and we will evaluate when my creatinine comes in.

["doctor, everything'll be alright"]

"I WILL FOLLOW that method of treatment which according to my ability and judgment, I consider for the benefit of my patient and abstain from whatever is harmful or mischievous."

first do no harm, indeed.

and reminding him of the downward spiral i find myself in, he validated, "it's depressing".

many have inquired as to why i am so unwell and waiting. and the short answer is, simply, there are thousands who are sicker than me. higher creatinines, greater nausea and endless dialysis.

so for now, i devolve. and i wait.

but like, the film, i trust one day, this human will evolve. man vs. technology will unite on my journey and i will wait no more.

there will be no HAL on my journey. there's no villian here.

my HAL will give me hope, vitality and sustenance.

and that's a film that's yet to be made.

more is more

the scream

there is no pain like a migraine. when i endure the suffering, i often think of the painting that hangs in the national museum in oslo, norway. "the scream" by edvard munch. it depicts unbearable pain. clutching. grasping. constriction. throbbing shrieks.

i wish this for no-one.

crazy and insufferable.

but, suffering abounds everywhere.

and so my pain is relative. bearable, indeed.

but still i endure, tolerate and survive it all...

migraines-they conquer the best of us.

death and the maiden

my christmas time has always been riddled with melancholy. consumption. disney-esque enthusiasm. haunting carols. my father's favorite carol was "good king wenceslas". 31 years ago today, i lost my father at age 38. dec. 13th will always be infused with sadness and regret and loss.

and yet, the "true" meaning of christmas is the opposite. joyous celebration. a miraculous blessing and gift for mankind. but, i struggle. how to marry my endless grief with pious bounty.

i have no answers. as i have no answers for his death.

this was the photo displayed at his memorial service. do i wonder why i was the only one included? yes. but does it bring me joy?

yes. oh, yes.

joyous celebration.

my very own christmas time...

house of pain

gimme shelter

drugstore cowgirl

i've never been one to spring out of bed.

2 kidneys, one kidney, 10% of a kidney; i am a certified night owl.

but this morning, lying in bed, eyes fluttering open, it struck me how much longer it now takes me to drag my body up and out. never mind my mood which has always been questionable. "henriette's really not human in the morning". how eloquently my mother warned my future roommate. (for you, j.)

creak. creak. tightness in the hips. swollen fingers. tense jaw. puffy eyes. no, i have never felt "good day, sunshine" vital, but now i feel drained right from the get go.

over to my medication drawer.(yes, i have a drawer), and there it was. the latest addition to my unwanted family. like second cousins one frets about inviting to their wedding; i understand the significance of my drugs, but wish them far, far away.

i am now on sodium bicarbonate. my CO2 level last time was low, indicating fluid retention i.e. kidney failure.

["one step close to knowing"]

recently, i have been taking my pills with strawberry milk. certain juices are prohibited as they interfere with absorption, and water simply doesn't mask the taste of the non coated beast, prednisone. but there's another reason.

daddy used to make me strawberry milk.

it's one of the few endearing moments i can recall. it's like having my hand held, or my back rubbed as i swallow 18 pills in the morning and 10 pills at night. so i spin this twice daily ritual into something slightly comforting. and i take mr. sodium bicarbonate by the hand and begrudgingly say,

"welcome to the family".

ray of light

another day older and deeper in debt

luminous

stairway to heaven

smile like you mean it

it's no secret that i love "the killers".

ecstasy. transportation.

i've seen them in concert 9 times; every time unique. in toronto, my bestest pal k. proudly presented me with a drumstick. i remain in awe as to how she conquered the crazy canucks. battered stick in hand, i promptly burst into tears. oh, how i can gush. an amazing moment. my heart overflowing with so much more than just a concert.

my love for concerts goes back farther than i would care to admit.

is music the universal equalizer? or is that pain?

i am familiar with both.

my first concert was at age 8. the Osmonds. [yes, i was obsessed with donny's purple socks]. ABBA. the only concert they played in toronto. and then pat benatar.

she rocked my world. amazing. exhilarating. powerful.

a role model, indeed. and then i was obsessed with concerts in high school.

"you don't drink, don't smoke, what do you do?"

concerts leave me spent. a high like no other. meeting friends, sharing joy and embracing a shared love. music transcendent.

i do experience joy. it provides me with happiness, contentment and satisfaction. perhaps it's lame, but i'll take any gift offered to me.

and as for the "killers", well, they fill me up. make me happy. and that fuels my soul.

and so i'll take it.

and when i do, i smile like i mean it.

internal clock

i've always been aware of time's fleeting breeze. tick. tick. tick.

perhaps it began when my father died. or perhaps it began when my mother's kidney became mine.

or perhaps i hear it now.

nevertheless, i've always heard a clock ringing in my ears.

life is short, indeed, and to be present in every moment remains a challenge.

i have struggled with this. there is no security. idealism, yes. but there are choices. choices we make, but have little control over.

a long time ago i made a choice. controversial, yes. but it resonated deep within me.

i never wanted children.

ah, i briefly flirted with the idea when k and i looked after our godson, mr. e, one day a week for a year. yes, i fell in love. but plentiful reasons for my abstinence abounded.

my health was first and foremost. exhaustion. disappointment. overpopulation.

reduce, reuse, recycle.

will i be met with the proverbial "you'll never know the love of a child?". most definitely.

adoption. fostering. they ignite the soul. valid. practical. spectacular. choices i embrace.

but there is so much more to this decision.

losing my father at age 10 to such a vile, despicable illness scarred my heart. and now i am estranged from my mother and my brother.

lost. floating. orphan.

am i cynical? perhaps. i suffered a painful youth and the present is filled with disappointment and regret. my family unit destroyed. i no longer believe in family. my family are my friends. i love my friends and their offspring. they bring me joy, enchantment, delight, respect.

but that journey is not for me.

not for me.

so my internal clock is not the throbbing of my womb. my uterus lies dormant.

my clock reminds me of the days i have lost. the days i long for. and the days i hope for.

end of days?

ode to pierre trudeau

ah, insomnia. you plague me...

i recently watched a documentary on "cirque du soleil". the spectacular canadian movement troupe. i've seen "O", "Le Reve" and "Zumanity", and my jaw hit the floor every time.

this one was called "all together now" and explored the collaboration between le cirque, the remaining beatles and their spouses, and sir george martin and his son. the dynamic present was fascinating and it renewed my love for beatles' music. i especially loved paul's less than modest comment..."we were a fucking great band!". yeah, you were...

oh, my throbbing heart. tears dropped.

i had an "a-ha" moment, recently. whenever i listen to beatles' music, i am transported. tears well up and my heart is full.

they were my dad's favorite. their melodies often played upon his tongue. he wore out our record player with their albums. and i remember his serenades of "octopus' garden", "i wanna hold your hand" and "yellow submarine" in the car, at home; everywhere. yes, we shared the love of music.

and so much more.

my postings about him have been intense; but i need to embrace his whole in order to be at peace with his legacy.

he loved music. he often sang in the car. (like me). he was outgoing. he was creative. he was intelligent. he was organized. he was adventurous. he loved to travel...and he was chronically ill.

beautiful disasters...

"i'd like to be, under the sea, in an octopus' garden in the shade"...

we traveled to ottawa, canada when i was oh, but just a girl. he wanted to show us the world. england, peterborough, sudbury, washington, d.c. and ottawa... and he taught us so much. he often kept us at home because he believed queen elizabeth's 25th silver jubilee to be more important than school.

priorities.

when we went to ottawa; we were spoiled. but there was a plan in place. we visited canada's parliament; where trudeau reigned.

magic. amazement. humility.

as our prime minister spoke, i watched in rapture. daddy bent over and whispered in my ear. "look how he wears a carnation in his lapel". "it's his trademark". "he's never without it". "it's my favorite flower, too".

i often buy these flowers. they grace my table tonight. i've often bought them for him. and i have placed them on his grave. they last forever, as i wish he could have. and they bring me joy.

i feel pain when i think of him; but my memories are joyful, too. and despite everything, it's time to embrace joy, joy, joy.

i feel so connected to him; in so many ways.

and the carnations bring me home to him.

bring him home.