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Los Angeles, California
I am 47 and thriving in Southern California. One day at a time.
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Thursday, September 29, 2011

the 97 pound duckling

august 23rd.

i don't know that there's anything particularly special about that date; but of course i had to google it. the best i could come up with, was my darling friend's, am's, father-in-law's birthday, dom deluise...

but in my world, it was a desperately nail biting moment. after the rejection, after 2 months of agonizing, unrelenting prograf migraines; tempered by the odd days soothed by oxycontin; endorphins flowed through my veins as dr. peng finally conceded that after 20 pounds of weight loss, k's stress-induced ulcer and my 80% bedridden depression, it was time to give up the prograf...OH, GOD. was it finally possible i could begin to lead a semi-normal life again?

i could feel prograf leave my system faster than michael jackson used to gobble up pills...(i can say that as his soul mate...), and then ever so stealthily, my creatinine began to plummet...in one month my creatinine relinquished it's unrelenting clasp down from 1.3 to 1.2, then 1.0.; but with each day that crept closer to this tuesday's 2 week clinic; my heart palpitated, my head throbbed and my hearing held passport in the land of the selective hearing...if i hit 1.5, i would need a biopsy again. the post clinic, afternoon call is a pre-traumatic syndrome that wallops your soul, and flattens your spirit until those final few minutes before the transplant co-coordinator reveals your results.
[cut to: hennybird's old school, cherry red cell frantically alerting.]

so it was with a freaky balance of chiropractic endorphins sizzling through my veins; coupled with the detox like headache that has been plaguing me for weeks, that i clutched my commodore 68 cell between my tremoring fingers (that damn cyclosporine) and returned my co-coordinators call. surreal. terrifying. was i even breathing? i could barely stand...

"kafkaesque..."

...a nightmarish situation which most people can somehow relate to, although strongly surreal. with an ethereal, "evil", omnipotent power floating just beyond the senses....


[yes, indeed. this is my world....]

"hello, liza. this is henriette ivanans-mcintyre. i am a post renal transplant patient of almost 6 months. i am just returning your call..."

"oh, great, henriette. thanks. ok. let's see..."

cut to: endless flipping of papers....and flipping...and flipping...and flipping...liza. you're killing me...

[how does one minute seem like a freaking hour? how. how?]

"ok. the changes in your meds are to increase your cyclosporine to 125 mg twice daily. and to d/c bactrim and acyclovar on the 8th...and you don't have to return to clinic for a month...that's oct. 25th."
[ok. ok. but...]

"could you tell me what my creatinine was?"

"sure. it was 0.8"

and so without a single ounce of decorum, class, subtlety or shame; and in the middle of the "sports authority" parking lot, i burst into a joyous yelp. "0.8?" "0.8?" "omg! that's amazing!"...

[liza didn't quite get my reaction, as she is not my usual co-coordinator and unaware of our last 6 months of hell, but she wholehearted agreed it was a beautiful number...]

quick as greased lightning, my eyes overflowed, my skeletal frame shook with uncontrollable joy and with a sputtering voice and racing heart, i threw my arms around my husband. my heart, oh, my heart!...with 4 fantastic cyclosporine results now firmly tucked away in my tiffany bean; i am finally breathing at a normal pace;  i have hope again, and i believe i can now, maybe, cautiously tiptoe away from the hell of the last 3 months...

i quit alcohol on august 15th. i don't think there was any doubt i had been transferring my addiction from pain meds after being cut off last year. and although i began taking percocet and tramadol responsibly after my surgery, i soon spiraled back into my old habits; and as kevin pointed out today; you have been on and off pain meds for 5 and a half months....no wonder you feel like shit...

[he stayed. the man stayed.]
it's a tricky, insane balance to strike when you have an addiction; when you are also in legitimate pain. but the reality is, i can't control myself. but i am not ashamed. most people have demons and addictions in one form or another, and if they kick that, they usually transfer that to something else. but ashamed? no. i am human. i have been to hell and back. i have been sick for 3 years. i have spent 2 years in bed. i have lost every aspect of my identity that made me whole; but now i pray it's time to start again.
[stage 1:gross, smelly, empty, soon to be office)

[slowly. gently. kindly. honoring my body.]

but, these headaches...i can't get in to see my neurologist until the 7th...what is this canada?

[please, cyclosporine. give me a second chance...]

after losing 20 pounds on prograf and painkillers, i am still weighing in at single digits. i hit 100 lbs. a couple of times; but no one is rooting for me more than my team at cedars. dr. jordan happens to be king shit attending physician who developed the antibody program that helps people like myself receive second and third transplants not reject. your first transplant has often built up antibodies ready to attack the second or third graft. i was incredibly fortunate not to have any antibodies built up against my mother's. incredibly lucky....so that was why my rejection was such a surprise...

the other day, he asked me if i ever get lightheaded, and i said, "yes". sometimes. like crazy low. like 66/33. and he suggested a great medication, and it was all i could muster and not snap, "oh, no, not another medication"...turns out it was potato chips; so we all enjoyed a well needed chuckle within a situation that can often be very intense...

but dr. jordan kept going. he scoured and scoured my paperwork, desperately trying to find a way to relieve me of my headaches and weight loss and weakness. valiantly trying to help this 42 year-old woman no longer feel sick...sure you pay for it; but america provides the best of the best; and i have never felt more cared for in my life...

dr. jordan also provided me with validation. supporting my depressive confessions. the rejection that sucked me into a spiraling vortex. i thought i was going to die on prograf. he listened and then legitimized the need to keep the kidney on medications, but not wanting to drive me insane with biochemical alterations that reject the organ and craze the brain. they need to keep the kidney in place, but they don't want to make us crazy people with the side effects these drugs are capable of...NEWSFLASH, folks...henriette's not just a crazy, genetic person, opinionated, bossy and uncompromising...try gobbling up toxic pills for 30 years and see what spills out of your mouth...

[that's my story, and i'm sticking to it]

as a side note, he has also mentioned twice now, that we know you do better with a transplant, than on  dialysis..." HUH? have you ever seen this redhead flabbergasted? shocked into silence was all i could muster...when i'm without a crumpled post-it note of questions clasped in my hand, i'm completely lost at sea...UGH...
but he ended with a final prescription of steaks and milkshakes in order to gain some weight...completely against the way i've ever eaten in my entire life...ah, what twists and turns we navigate!
but the best words i ever heard in my life was when dr. dauer saw me after 6 weeks i'd been on prograf and distraught, he instantly proclaimed "you are a (f-ing) skeleton. you are getting off prograf today and going back on cyclosporine. we'll get these headaches under control and in 3 months you'll be back at work..."and so today when i saw dr. peng, who was actually interviewing kevin for his 6 month check up, she turned to me with kindness and said, "dr. dauer REALLY cares about you". and so i told her that he has been an amazing role model for me for 15 years, since my father, also a physician, passed away at age 38. her voice was soft, there was protection in her voice and a smile on her face...and i felt cared for.
(stage 2: schellaced, smelly, empty, soon to be office)

but don't EVER get me started on homeopathic remedies. i've run that gamut as well...massage, chiropractic, acupuncture, icing, heating pads, exercise (finally, again!), tiger balm, mouth guards, acupressure, vitamins...

but i'm not perfect, as addicts never are...tuesday i had a follow up appointment with my pain doctor, dr.far. she had been the one prescribing me oxycontin to assist with prograf. she was willing to give me one more prescription, and it was beyond tempting. mostly because these headaches i have been suffering from have stolen so much of the last 3 months of my life. i often can't open my eyes because the pain is so bad, and i am more than often house bound. i knew it would be too easy to go and pick up the prescription and get some relief, despite the horrific cycle i would find myself in again...but tuesday afternoon, as i lay with an ice pack on my head, i struggled and struggled and struggled to find the courage to cancel the appointment. i finally went into kevin's office and through tears of shame and frustration, broke down and confided everything. that i had had the opportunity. that i had cancelled the appointment...that i had wanted the pills... and that i was freaking out....and he was everything i had hoped he would be...and more.
AH! but, another joyous event took place on august 23rd. our dearest friends in toronto, finally had a beautiful baby girl; a precious gift from god. i won't even use their initials, because they are very private, but their beautiful daughter's name is M Q B-P. words can't express the love and joy i feel for them. everyone has a story; and they've have a long and winding road. my joy for them is immeasurable. and it was on aug.23rd. their birth, and my rebirth with miss "c". so i will now ALWAYS call her miss "c"...fingers crossed...my good luck charm...we have always been the best of friends, and this just cements it...my friends, my loves...i simply can't wait until i am strong enough to see you 3 in toronto again...maybe my birthday??? :-) look out for the present, eugene and tyrone, and ms.c!...
SO. one month until my next tx. visit. an increase of 2 weeks. but, i should have been going to see dr. dauer on a regular basis weeks ago. but dudes, i've always been the 3% girl. rejection, prograf, oxycontin, kevin's ulcer...
it all nearly destroyed us...i feel like a 42 year old woman in an 80 year old woman's body. broken, stiff, weak back, headaches and no appetite. but it was dr. dauer who reminded me it would take 3 months before i would be back to normal after the hell of prograf. prograf nearly killed me. between prograf, oxycontin, and losing 20 pounds; i can barely walk, smile or laugh. it killed my spirit, my body and my hope....but i am finally, finally getting the tiniest glimpse of what henriette used to be....and for the first time in weeks, i giggled...

AN ODE TO THE HEALTHY:

when you go to work, i wear an ice pack on my neck...
when you take your kids out, i slather tiger balm on my temples...
when you socialize, i get adjusted at the chiropractor...
when you exercise, i nap...
when you read, i wear a mouth guard, and flip through magazines...
and when you eat, i down my endless medications...
and when you shop, i stare...
i don't feel strong enough to drive...not eating for 2 months will do that to you...
and when you gaze out the window at the passing view, my head hovers between my knees so that kevin can rub my lower back...
and when you raise your children, i protect my kidney...
but i have power walked 2 days in a row now, and that's a start. and i'm proud of that....

[baby steps, dude.]

i have no memory anymore and no concentration. prograf seems to have wiped that clean...temporarily, i hope. the other night kevin wanted to go and get some korean be-bem-bap, and i looked at him with a dumbfounded glance. i simply could not conjure up when we were last there. a leaden enwrapped my gut, as i wracked my brain to recall the burbank location...ah, prograf. side effects include memory loss and confusion. i gazed at kevin with blank eyes, hooded with sadness...but we eventually gave up, since the restaurant was closed....

but there was validation to be found within the walls of cedars-sinai. surprisingly so. you will never find me dissing western medicine, but they are sometimes lacking balance between eastern and western medicine...
2 weeks ago, i spoke to dr. jordan about my medications and he explained about the different approach they take to transplants now. they used to under suppress with the the worry that the toxic medication would destroy the kidney; but now they have reversed their train of thought. they want to slowly over immunosuppress the graft, thereby keeping creatinine levels as low as possible over time, in order to get longevity of the kidney, until suddenly you are rejecting...and there's no going back...


[sorry, exciting shit to me...]


ok, now let's lighten the mood...
when kevin was in scotland in early august, i had 2 amazing, darling friends step up and fairly save my life in this crazy cabin in sky...my magical m, spent practically every night by my side in our cal-king bed along with our respective hounds. she provided me with companionship, comfort and love, and i owe you big time, moo...
but the true surprise was my brilliant, talented, eccentric friend, s., this chick and her midget showed up in front of our dump of a shed; completely gung-ho. i was desperately craving to turn this wreck into a private sanctuary of my own. despite k and i's, deep love for each other, a 1000 sq. foot house can get on any marriage's nerves...so without blinking, she arrived with drills, hacksaws, ladders, hammers, screws, levels; and an enthusiasm for ikea, lowe's, and home depot that rivaled no-one...my admiration for her grazed the galaxy stars...
no-one could touch her. shelves, shellac, bamboo curtains, a front door that locked, a screen door, a new desk chair,...the works....so i did a little painting and little gardening, but ah, s. has an enormous talent and she provided me with an "offoasis" (that's office/oasis)...i know...that does't quite work...but she gave me a gift where i can cerebraly fly when my body and mind and are in sync once more...just call her "barberilla"...(bobbie villa?)
and so this 97-pound ducking is thrilled to be back writing. i've missed it. i've missed my life. i hate my bed. i hate my headaches. i hate the "tick, tick, tick, tick, " i hear incessantly hear over my head. i hate every day i miss out on; even the most minimal basics of life. i try to be patient. i try not to focus on the disappointment the last 6 months that have fairly destroyed us...it's been a war. and we are exhausted.

but now i have a cocoon of my very own...
and here's what keeps me going. i know i haven't been on facebook or on my computer for weeks, but i think about my friends and family EVERY, SINGLE day. the ones whom have supported me through these last few years through cards, e-mails, gifts, calls, texts and visits. I DO. i have an enormous pile of your cards in my new office. in fact, it's the stack sitting on top of that spectacular, plastic orange daisy. everyone from tennessee, denmark, winnipeg, california, israel, boston, toronto, vancouver, saskatoon, and everyone else scattered around north america...who else am i forgetting?...take it up with prograf!...my days are occasionally so physically painful and emotional challenging that rereading your support, enwraps my heart with affection, gives me strength, and helps me stay calm during the darkest hours, and wills me to attempt another day...compromised or not...

and then when i look upwards, i glimpse at the collage of photographs i created to make myself laugh. to remind me of the ones i love. to remind me that my friends care. to remind me of the good times that we have had. and that we are all now so busy. and we all have our own stories. but we all share love...

[i am missing a couple of shots, so please don't be offended!]

97 pound ducklings sure have it rough. sure they are cute, but not only can't they fly, but their homes are often attacked by land-based predators. something to be said for having a little meat on your bones, a little muscle on your wings and a little more motivation in your soul...

swans on the other hand, glide majestically when swimming and no other water fowl moves as fast in the water or in the air...elegant and graceful. clever and outwitting....just like i used to swim...
i'm a long way from the elegance of the swan i used to be, but if this 97 pound ducking keeps getting a 0.8 creatinine, there's time enough to blossom into the woman i used to be...
oh, and with a little help from my godson, too...
not the kidney...wilfred...not the kidney...!


2 comments:

  1. Yay...yay...yay...yay...yay...yay...yay!
    I am so unbelievably excited for you! That is amazing news! My heart is pounding for you. It really is the BEST news!

    You are divine!

    ReplyDelete
  2. That was beautiful. These pictures are amazing!

    ReplyDelete