About Me

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Los Angeles, California
I am 47 and thriving in Southern California. One day at a time.
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Sunday, July 24, 2011

the glass slipper

when cinderella bolted at the stroke of midnight, she left behind a glass slipper. fearfully detouring away from magic, risk and fairy tale happiness...

there's a quote i came across recently, that i will have to paraphrase..."the really happy person is the one who can enjoy the scenery when on a detour..."

for me, deeply resonant. i used to be the kind of person who needed a plan, a list and the inevitable meltdown would ensue when derailed. but after 30 years of chronic illness, you get it. you have no control. and maybe that's not such a bad thing after all. some of our greatest adventures are borne from messy, infuriating sidetracking...

one particular event radiates in my mind. kevin and i were tackling a virginal route back from palm springs; back to the basset ranch where our sassy-ass basset, daisy, awaited. she had undoubtedly terrorized the other hounds with a turned up snout, a constant view of her delightfully enormous booty, and frequent growls through under bites of superiority..."i'm not a shelter dog...! i have a home...!"
ah, daisy was comedy...

besotted by these unfamiliar desert vistas, we cruised toward the oddly, yet charmingly named "pearblossom" highway, and were no doubt deeply immersed in conversation...not surprisingly, we missed the 15 turnoff. as the freeway yielded into one lane, The established superseded by gritty, unadorned shacks and equine sightings more frequent than any car; after a few sidelong glances, we shortly realized we were lost, lost, lost...
meth country or a throw back to the gold rush, the sparse, lonely landscape drew me in. sunset brushstrokes of crimson, scarlet and tangerine stained the gloaming hour sky. my favorite time of day. back lit, prickly joshua trees; those unique, brambly cacti that evoke such romance; glowed luminescent. and in the distance, a train silently chugged across the landscape. the industrial revolution at it's most charming...only enhancing the spell of this accidental detour. reminding me of the days of trainspotting with my father...a moment not to be photographed; simply to be cherished...
but sometimes detours don't hold the magic of that particular evening...

thursday morning i started awake to an unfamiliar tone in my husband's voice. exuding pain and panic, i was awake within a quarter of a second.

[as an aside, fabulous to know my maternal instincts are alive and kicking, despite my only babies having been covered in fur...]

for a man i've known for 20 years, has maybe been in bed 4 times with a cold for barely a day, and who abhors pain killers, his abdominal clutching and moaning was unfamiliar territory. and terrifying. i kicked it into high gear with a hot water bottle, mint tea, even a muscle relaxer with a giant glass of water. but, within minutes i was insisting hospital, and it wasn't too much longer before he conceded.

and that's when i knew something was seriously wrong.

[and my glass slipper dropped...]

cedars is an hour away, and we're about as sick of that place as "subway" on a road trip; so the lesser of 2 sickies (that being me) plunked down and whizzed over to burbank's st. joseph's hospital. perhaps "whiz" is a slight exaggeration for a driver who clutches the steering wheel between her paws until throbbing red. sits ramrod straight as if strapped to a gurney. glasses so far up her nose, it leaves forehead imprints. and pulled her seat so far forward that her knocking knees could have been doing the navigating...such a ridiculous sight, that despite the pain we both were feeling, a wee titter managed to escaped our lips as i pulled into emergency.

and as kevin underwent the protocol of insurance, data entry, hospital gown, blood draw, IV and administering of dilaudid, i tried and i tried to jam that other slipper upon my foot.

[i wanted to save him today.]

"waiting for the other shoe to drop". and it had. but it was meant to. so i could feel all the fear and uncertainty my beloved has endured for well over 3 years now. to see him in pain. to worry about the impending diagnosis. to feel completely and desperately helpless.
a horrible experience. an unwelcome detour. a beautiful lesson.

with spousal approval, i am allowed to reveal that kevin has an ulcer. there are additional nether region issues not currently up for discussion, but this is serious enough. he is now on 3 medications and he will have to get an endoscopy or laparoscopy.
if someone measured our stress level right now, the neon wheel would violently spin until the arrow would furiously snap off and we'd win some kind of enormous, stuffed animal that i'd want to throw off the side of our mountain. or maybe burn in the raging fire seething inside.

[anger escalating up through my chest, spilling out of my ears, and all over the floor that i tiptoe upon...]

i tiptoe throughout the day, attempting to dodge pain, depression and confusion over when this cinderella's fantasy transformed back into a big, fat, rotting pumpkin.

and now my prince is losing rank...

there is another cinematic gem that i've been pondering of late. in ''the hours", meryl streep's character speaks to those brief, transient minutes as the early morning unfolds. in those pristine moments, her character experiences true happiness. the eyeblinks in which anything seems possible before her mundane routine settles in; harshly stripping away promise like a band aid. left raw and aching, a new day begins and her pipe dream vaporizes with the morning haze.

for me, "the hours" was a film attempting to depict the necessity to focus on the mundane, routine details of life; therby dodging the depth of pain that can otherwise swallow us whole. i think we are kidding ourselves if we can't see some truth in that...

[but perhaps these are just the musings of someone trapped in the hell of chronic illness.]

once upon a time, my dear friend, n, noted that with unemployment comes as much stress as a job you loathe. coupled with a fractured body i don't understand, i feel like little red riding hood lost in the woods...vague purpose in clutching my basket of goodies, searching for my grandmother's haven of love and plodding along with the focus of the disoriented...

[mmm...now wondering if running into the wolf would make life more interesting?...]

when dawn breaks, i turn over and pray for more sleep. and when i simply can't sleep any longer, my eyes reluctantly flicker open and for a brief instant i swim in a beautiful respite. i float in a sea of calm. no tremors. no headache. and no exhaustion. gazing at the ceiling, i silently beg (and occasionally vocalize) for this status quo to linger. just a little bit longer...
but manifestation is what side effects do best, and they cunningly creep into your brief intermission. flashing lights, libation gulping, bathroom runs and the somber announcement that the show is about to recommence.

[return to your seats. return to reality.]

pebbles of stone, not unlike the ones woolf ladened her pockets with, form within my gut and circulate like cancer throughout my emotional conduits...clogging any possibility of relief...tremors mushroom, a vice of discomfort orbits my head, and fatigued stretches married to my throbbing incision hint at the full-blown sizzling, charged day ahead.

with a swing of trembling gams over the edge of my bed, my day begins. hands that shake as i grip my decaf tea. a two-handed grip in any attempt to sign my name, and a palm indelibly spread-eagled across my solar plexus.

[be still my quivering chest. purify my aching head. unburden my melancholy heart.]

this next segment is probably as interesting as being crammed into a stuffy, traffic school classroom; but here's the official renal state of affairs before i return to transplant clinic on the 2nd of august.

-creatinine: 1.3 (great)
-blood pressure: low, and without meds (fantastic)
-see you in two weeks!

put physicians on prograf for 2 weeks and let's watch them flip the figurative cartwheels...

[patient frustration should be the next cause. the next fundraiser. the next charity marathon. the next ribbon gracing your lapel. i nominate the color black.]

i live with myself 24/7. and the physicians do not. and numbers on a page do not dictate quality of life.

so tomorrow, i visit my pain management doctor, dr.far. anything to help with the migraines and incisional pain.

and on august the 4th, i visit my neurologist, dr. andiman. anything to help with my tremors, obvious depression and non-narcotic alternative to the migraines.
i am on 14 medications, including a patch i wear over my incision for 12 hours each day.
[yeah, those are my boobs. get over it.]

but prograf is the evil stepmother. i am trying; but i have to try just a little bit longer. prograf is the tiara of caplets crowning this princess. but how do you make friends with something that has the best interests of your kidney; but not the best interests of your heart?

[oh, how i miss cyclosporine.]

1) cyclosporine: immunosuppressive #1 was my fairy godmother for a long, long time. it kept my mother's kidney chugging for over 23 years. i felt an affinity with her. it will not be this kidney's friend. it caused the rejection.

2) prograf: immunosuppressive #2 is the drug i am currently on, and the one that causes all these insane side effects. the horrible irony is that my creatinine is 1.3. (0.5-1.4) and my blood pressure is fantastic, even without blood pressure medication. but the side effects are unbearable, so when i return to transplant clinic on august the 2nd, i will spread this issue far and wide across the exam room, like a crazy game of twister; with the objective of seeking physical balance. i simply can't live this way...

3) belatacept: immunosuppressive #3 is the barely FDA approved drug that i am hesitant to try. just recently discussed, it increases risk of rejection, risk of lymphoma, a greater chance at developing epstein-barr and there's very little substantial research. i am not ready to tread this path. but, terrified or not, it may be my only option.

cinderella wore a big poufy dress, one glass slipper, and sprinted back to a world where she was abused and ignored, but would eventually be saved by her prince charming.
i never dreamed of being a princess. never dreamed of being "saved". but when you share your life with a prince, for better or for worse, you will do anything to don 2 glass slippers, and stand by his side. louboutins, keds or payless, it's all the same to me. "if it does not fit, you must acquit". sorry, cochran. no free pass. detour ahead. yield to hard work, cinderella...

so maybe i was wrong.

perhaps there is happiness to be found along this uninvited detour.

[i can help. i can listen. i can support.]

with 2 glass slippers, i will tiptoe through the next few weeks on prograf, but i will also stand tall beside my prince charming; and together we'll doggedly steer through his detour. so i jammed it back on my foot, not so he can save me...
but so perhaps together we can save each other...

Tuesday, July 19, 2011

thrive

there used to be a time in my life, when comments like," you are a such good friend; a great listener"; "you look lovely today"; "your home is beautifully decorated'"; "what a wonderful performance you gave"; "the animals thank you for volunteering"...would overflow my barren chalice of a heart with irreplaceable affection...compliments balancing an otherwise average day and mercurial rhythmic pace...

getting carded was always a vanity trip, to be certain, but in a town obsessed with youth, where i never quite "succeeded" the way i had hoped, a secret, swaggering smirk would always flicker across my lips whenever those 4 glorious words were inquired..."can i see some i.d.?"

[sorry, after renal failure, dialysis and a transplant that has already rejected once, i'll gratefully ride the vanity carpet for a moment or two...]

even the odd makeup job...when a young hottie would ooh and ahh over the magic i had performed to transform their skin into a glowing movie star palette...

yes, for a woman who lost all self-esteem several years ago, these are perhaps, trivial gifts to your mind, but after 3 years of watching your health submerge deeper and deeper beneath the horizon; i would clasp onto them the way one firmly, yet tentatively holds onto a newborn's finger...with loving delicacy and the desire to never let it go...

disability became my income. volunteer work disallowed. and the energy required to maintain the friendships i cherish became deconstructed versions of the best of myself. texts, emails and the odd call never represented the friend i wanted to be; but it was all i could engineer while chronic illness legislated the structure of my fading life.

and so on april the 8th, i prayed and prayed (and prayed maybe just a little bit more), that all this might be over with the gift of a new kidney. my husband's kidney. the love of my life's kidney...

but it hasn't. it has become a shadow of the success of my transplant of 1988. it's potential has evaporated into a haze of alternating medications, renal biopsy, rejection and familiarity with cedars-sinai that rivals the back of my hand...

and so now different gems shimmer within my soul...

-a physician friend of kevin's emphatically declaring prograf is a horrible, horrible drug...

-my social worker at cedars, one ms. lucy kim, comforting this teary eyed patient, expressing how challenging second transplants can be...

-and my pain management physician reminding me that my incision could bring pain for at least 6 months, if not up to a year...but probably not my entire life...

not exactly shafts of sunlight illuminating the yellow brick road; but in this "new normal" where i writhe and thrash, these comments instill even the smallest suggestion of hope; linchpins i can affix to my heart to before it completely crumbles into fear...

but today, my attending physician suggested immunosuppressive #3 for this labored body to attempt to tackle.
it's official.

still plagued with migraines/headaches, tremors and absolutely no appetite; i now fall into the category of those who simply cannot tolerate prograf. last week i was in bed all week. this week, with the reduction from 3 mg to 1 mg, i saw slight improvement, but nothing vaguely smacking of a "decent quality of life".

so today, there is a new drug on the horizon: belatacept

this drug was approved by the FDA on just june 15th.  this is a new, bordering on experimental, medication...

and here's the poop, folks...

it's given intravenously once a month, in addition to iv antibody treatments. your risk of rejection increases, and there is a much higher risk of developing lymphoma (cancer); but for people who cannot tolerate prograf, it is the single, best option.

out of 700 patients, 15 developed lymphoma. one of their patients even went off belatacept after 5 years because of that very reason.

[can't shake the feeling there's a cage, wheel and alloted amount of food waiting for me in a cedars' labratory on this one...]

this was too much to process on the drive home from cedars today.
i was alone, dumbfounded and thank god for speaker phone, because the sound of my husband's voice was the only thing that kept me from careening off the side of the road...

throughout teary droplets of confusion, disappointment and perhaps a dash of self-indulgence fogging up my glasses, i negotiated my way throughout the roadways of my adopted hometown; frantically wiping away at the dribbling emotion veiling all vision.

i couldn't see a skinny l.a sister clutching her starbucks in hand...not a celebrity in sight...and the glorious summer foliage was a watery blur...

[c'mon hennybird. bring on a pit stop.]

so i pulled over to the nearest "coffee bean", simply because there was parking. ah, parking karma in l.a. is revered in a divine hemisphere...so i walked over to the entrance, me with my painful incision, tremors and migraines abounding, and held the door open for a new mother, clutching her newborn tightly between her paws...

not a nod, not a thank you, not a single acknowledgement of recognition...

rude would be an understatement.

but then i glanced up and saw this sign...[and loved it...]
and i realized, i am not angry. i don't hold blame. but i wish this upon no-one.

i am sad. i am scared. and i am tired.

the incredible joy that exhilarated us for 2 weeks after the transplant is gone. it was a time of complete gratitude, jubilation and ah, "joie de vivre"...

but now, i ponder, process and proceed forward into unknown territory once again...

3 variant immunosuppressives. 3 uncharted pathways. 3 daunting proposals i must survey, probe and attempt to decipher, so that this kidney won't ever want to leave me...

[there is no place for the word "easy" in this post]

because i want to live. not just survive. but thrive...

thrive.

[please...]

Friday, July 8, 2011

true blood

after 4 days of involuntary, bed confinement this week, even an 8 am call to cedars sounded like a lovely, lazy saunter along the promenade upon a sunday afternoon...

i was discharged last sunday, with an enormous question mark tattooed on my forehead.

"still rejecting?"

only a few days of the new immunosuppressive, "prograf" would reveal...

side effects have manifested intensely. in addition to the iv pulse steroids i received 3 days of, post- biopsy, inpatient; i now attempt to balance everything from migraines to tremors to nausea to GI issues to complete loss of appetite. i have lost 5 lbs. since the biopsy. this last week has been a memory card of pain and distortion i can't wait to esc. from.

[delete, delete, delete]

i am now medicated with oxycodone, several tbs. a day, just so i can put an entire pair of shoes on. i have scaled the ladder of painkillers to the tippy top, and wobble precariously at the top, still finding no relief.

but for now, i "hang in there", currently lying on the edge of my bed, waiting for the blood results that should come through in the next few hours.

these results will determine everything...

am i still rejecting?

do we lower prograf?

or do we switch back to cyclosporine and increase my baseline (decreasing kidney life) ?

this wasn't the visual. this wasn't the graphic. and i don't like the pitch.

more painful than this watched bucket of water boil over and scald my entire frame.
or is that bucket of blood?

Friday, July 1, 2011

bringing home the b(iopsy)

ironic playboy purse; hotter than the birkin...
but our reservation was for 8:30 am!
i'm sorry. there's a 45 minute delay for a table...would you like to wait at the bar?
l.a.'s new hot spot...
care to peruse the menu? (amuse bouche, moi...)
one giant mimosa, please...
i'd rather be at the IHOP...
what? no eggs? no toast?
escorted to the VIP room in style...
waiting to be sauteed and fried...
i'd still rather be at the IHOP...
i'll say one thing, these reclining seats are all the rage...
tastes like chicken...
a table with a view...
now just waiting for the check...(ouch!)

itemized list pending...