Friday, March 2, 2012

A Calm Acceptance Is Within My Grasp

we did okay yesterday.  at the end of the day, there we were:  accounted for, joking around, a little breathless.

the end of the day jars my memory -- i've never read kazuo ishiguro's the remains of the day. i enjoyed the film adaptation, despite not having much fondness for anthony hopkins. i chuckled nervously just now upon learning that there was a well-received musical version... surely someone is punking moi?

let's steal it as a theme, what do you think? the decline of aristocracy. i see it all about me, i see it in marlinspike hall, in spite of (or because of?) a strict tradition of genetically indentured servitude within the domestic staff's nucleic code.  i see it in the algae colorfully clinging to the edges of the moat, sliming the captain's miniature pink submarine.  all of tête de hergé (très décédé, d'ailleurs) is witness to the fading luster, what with budget cuts to roadside bonsai forests, as well as the recent spate of re-appropriations of museum donations -- primarily of period clothing -- by some of the oldest, most respected, and storied families of the realm.

first on the list yesterday morning was the infectious disease doctor and his fancy-schmancy new infusion center.  we left early, we got there late.  lots of tête de hergé traffic (balloons and the usual signage game play), lots of fender-benders -- but tiny fenders, at least, on the mostly clown cars.  red bulbous noses, yarn hair, voluminous striped britches.  it was hard to be upset in the middle of primary colors and popping jewel tones.  ruby, the honda cr-v, waded through the mess like the champion that she is.

the office had relocated since my last visit, and while the staff was perfectly calm, there were glazed eyes, lost supplies, misplaced charts (doctors' notes were being recorded on pink post-it notes) and rooms piled high with the disparate art work of gone-out-of-business motels.  the few finished walls boasted cooler fare, mostly activist expressions about HIV/AIDS, human rights, amnesty international, as well as small touches in each exam room, like autographed pictures of the docs with magic johnson or anthony fauci.

what they are gonna do with the motel art?  well, dear readers, i respectfully introduce the motel art show series, such as "The One Night Stand At The Ole Miss Motel on September 3, 2009":

Under the direction of photographer Erin Austen Abbott... [of Oxford, Mississippi] the show kicked off in 2007, followed by one in Los Angeles the next year. “I was taking pictures at an old Travelodge-style motel, the type that you drive up and park outside your room, set in a u-shape,” says Abbott. “All the doors had these wooden red hearts on them. I had heard rumors that the walls inside the rooms were brown wood paneling, and I suddenly had visions of T. Model Ford sitting on the edge of the bed, playing his hill country blues while fine art leaned against the furniture or replaced the current art hanging in the rooms.”

Abbott immediately went out and found 10 artist friends who were having a hard time showing their work locally. They made up the first show, and, in 2008, she took her motel art show on the road to Los Angeles. Over a thousand people showed up for “The One Night Stand at The Beverly Laurel Motel,” and the show was featured on Yelp and in the Los Angeles Times...

For art lovers who don’t live near Oxford, Abbott has good news. Next year, the show will be presented by The Yoknapatawpha Arts Council (named after Faulkner’s fictional county) and, in addition to being held in Oxford each October, travel to other locations in the spring and fall. For 2012, the Motel Art Show is scheduled to hit Brooklyn, New York, in May and Nashville in September.
so i am thinking, why not a variation on the motel art show model?  why not "decoration's remains," about medical office leftovers?

i'm jittery this morning, can you tell?

anyway... what i most appreciate chez the infectious disease dude's place are the boxes of tissues placed at intervals of every 2-3 feet.  i am always springing a leak of some sort when i visit.

it was determined that yesterday was day 36 of my 42-day intravenous antibiotic sentence, and that i would, all things being equal, have my PICC line pulled next wednesday after the final dosing of antibiotic tuesday evening.  there were arguments made over then beginning an unending course of oral antibiotic.  i didn't listen very closely -- spasms in the left leg and in the left shoulder (that's a distressing place to have muscles seize, smack dab in the middle of an open wound).  i have nothing to contribute to the conversation.  just tell me what to do.

ever since the head infectious disease doctor dude saved me from an ignominious end a few years back, i've trusted him implicitly.  i was an inpatient, crammed into a shoebox of a room ["it's a private room!"].  trapped by thick beige plastic bedrails, i could just make out the outline of my wheelchair, stashed in the corner by the leaking sink and plywood wardrobe.  a familiar urge overpowered my good sense and i crawled between the burglar bars, landing atop, although also landing askew, one of three bedside commodes. shoving aside four types of aluminum walkers [a rollator, a hemi-walker, a platform walker, and the drive knee thingy] before reaching my power chair.  satisfied sighs as she powered up, no worries in that regard, no need to find a charger midst all that junk.

long story short, yes, of course, now i was trapped in my chair instead of in my bed.  i strove to push my way out of the corner, tried equally hard to plot the path of least resistance in the general direction of freedom.

within five minutes, i was red-faced, hair all sweaty tendrils, cursing and sobbing, à la fois.

enter infectious disease dude, the head dood, in fact.  he's a geeky looking fellow, very tall, bent, kind of a craggy face, but kind. a marvelous sense of humor, but you have to be patient with it -- it's shy. better not to laugh too loud or too much.  in fact, better to arch a simple eyebrow and allow just a hint of a smile in the eye.

the doctors of today don't engage. they see a patient trapped as if surrounded by an ice floe in a room that draws junk to itself like a magnet attracts iron filings.  this doctor, however, fairly leapt over the obstacles, deftly (well, not deftly, but with dreams of deft-itude) piling and reworking the layout.

"there!" he crowed.  "you're free!"  i've been downright fond of the man ever since that liberation.  he laughed with me as i confessed that i really had nowhere to go but back to bed...

i saw a new PA there, my doctor and his usual PAs apparently having been lost among the huge boxes and crates.  [wow, a leitmotif!]  having a new PA was distracting, as she was staring at my feet and hands, her own hands suddenly anxious, her fingers picking at her fingers, now and then twirling a thumb ring.  she had some sort of medical blackberry, some sort of know-it-all electronic resource, and was peeking, picking and pecking, making furious inquiries.

CRPS is oddly symmetrical, i've noted that before.  the latest evidence comes in the form of "matching" pus leaks from below the cuticles on my middle fingers and thumbs.  it is bizarre and has held the attention of many hospital types, usually in lieu of dealing with my screamed complaints about the spasms.

so we all oooohed and aaahhhed over the pus on my hands, how weird, hmmm, and huh, wouldya look at that?

fred and i drove across town, got lost, got found, checked in, finally, at one of the satellite offices of dr. shoulderman, my orthopedic surgeon.  we stared at CNN. i zoned out. fred kicked me, and i was called back into the labyrinth of exam rooms and x-ray cloisters.

the x-ray tech looked very familiar and she positively lit up upon seeing me.  she and her pals had been working the last time i had been there, mere hours before ending up in an ambulance, heading for hell in the icu.  "you were so sick," she said.

"you look a thousand times better," she ended, and i decided she was the most talented and deserving of x-ray techs that i'd ever met.  cute, smart, perspicacious, insightful.

the gist of the visit?  pseudomonas in the wound, which had an unattractive green cast to it, and a smell which the surgeon described as "fruity," but which made moi gag.  he was completely calm, and swore that a vinegar solution, in place of the saline soaked wet-to-dry packing, would quickly solve the problem.

we hope so.

i especially hope that it is easy to do, since the first message on the answering machine upon our return home was my MDVIP go-to-guy's nurse saying that insurance was not covering home health visits and that she'd cancelled their plans for this wound.

my reaction to having compiled yet another huge bit of medical debt was to try and sleep a little bit.

thus far this morning?  the home health agency has called three times, and -- convincingly -- told me that my MDVIP go-to-guy's nursenurse is misinformed.

i don't care. someone is right, someone is wrong, but i just don't care.  i can do this dressing change -- piece of cake! fred, bianca and i have the antibiotic infusion under control; and i am getting stronger, day by day, thanks to not being trapped in bed by wires and tubes, and ignorant assumptions.

i'll let you know if there is any attitudinal shifting once i am faced with the green stinky evidence.

psychologically, i am not in a good place, but i am trying.  if the spasm-meanies will give me a bit of peace, i think a calm acceptance is within my grasp.

Thursday, March 1, 2012

Adverse Possession

a long and important day ahead:

two appointments, two dressing changes, lots of driving -- the most activity since, well, since things went definitively to crap.

i am preoccupied with thoughts of my mother.  not loving thoughts, not gee-whiz-but-those-were-the-days retrospection.  no, it is more the sisterhood of the fallen.

i correspond regularly with a nephew i've never met.  like most kids, he's cool and we have pithy exchanges about such things as why he named his turtle "ron paul."

in the process of writing each other, it's inevitable that news of the clan insinuates itself into our purity -- these relations all live in the same town.  the mother-unit, her two preferred offspring, their lovers and spouses, their children.  i don't know them, sometimes like them, sometimes find my lip curling in derision, often am just confused.

that's why i prefer my nephew.  he has a dry wit but he's honest.

it turns out that his grandmother, my, cough, mother, has taken to falling down.  like a fish out of water?

my sister-in-law decided to flesh out the situation for me, the absentee daughter, in an email yesterday... the result of which was not pretty.  first, i wrote a condescending email back to her.  it began:

you gave me a lot to think about, and thinking is... hard, right now. it is easy for me to sit down here and wish things were different in YourTown. but now that i've a better idea about what's going on, i'm kinda flabbergasted.

there are a few things that we all agree on, i'm hoping:

infighting and backstabbing are wastes of precious energy and resources;
my nephews and their parents are all awesome individuals;
my mother should not be on the floor, ever.

like a thickening sauce, i was on the phone just a few hours later, calling my half-sister, and as she further fleshed out the situation regarding the mother-unit and her fondness for the floor, i heard myself yelling and screaming.  what kind of things did i so articulate?  fred said he heard this one several times:

"it is not normal to leave someone lying on the floor for 13 hours! it is not normal to think that that is okay!"

it boggled my already boggled mind to learn that she'd fallen "between 20 and 25 times" in the past two weeks.  my brain imploded at statements like -- if i stayed with her, i couldn't pick her up, but i could call my husband, who could come over and get her up..."



seriously, hello-o-o-o?

please tell me that i am not weird for thinking stuff like -- how about preventing the falls to begin with?  what does the doctor say?

then there is the obvious -- hire someone, take her to your home, move in with her, stick her in an LTAC (not me!), get her some PT...

but the plan in force seems to be:  place lots of phones about, so when she falls she can crawl to one and call for someone to come pick her up.

yeah, so i screamed and yelled.  not because i love her at all, or care what these folk do, ultimately, for one another, but because no one deserves such pointed disregard.  no one.

also, i am of the Felled Sisterhood, remember.  twice in the last month, i have fallen, both times while horribly ill, depressed, hopeless.  it has nothing to do with being on the ground, everything to do with wanting just to give up.  it hurts, too.  it's embarrassing.

i remember, the last time, my head freshly banged, my operated shoulder throbbing, my knees skinned, my toes twisted, begging my entourage to say only positive, encouraging things as i tried desperately to get my legs to work, to move in a predictable fashion.  my entourage, unfortunately, thought that request was crazy talk.

"that there is crazy talk," the entourage said.
"meow," said dobby, who thought my head crammed into a pristine corner of the bathroom tile a riotous affair.
"someone call 911?" asked the fireman.

even the rescuers were scared.  i mean, there i was, saying, you can't pull on my left arm, my legs aren't working, i've injured my left hip, hit my head, and no one will chant cheers for me, there are no pom poms, and you sure as hell better not have shown up with lights flashing and sirens sounding, because captain haddock will hear about it, and we'll have our squatters' rights snatched out from underneath us faster than you can say "miserable blundering barbecued blister."

i absolutely have no clue how things roll in my mother's world.  there was, in all of yesterday's exchanges, a tale about how she called 911 for help, how one of the EMTs, who knew her and her family, called her son instead of actually going to her house, so that the son, after what i assume to be a fair amount of time, was the one who arrived to scrape her up off of the floor.

it's funny, the things that ultimately sent me flying around the room backward, whistling dixie.  like the statement:  "mom hasn't been very compliant with her meds." no shit,. sherlock!  i mean, imagine.  you're lying on the floor (again) and you think, "well, drat, it's time for me to take my blood pressure medicine..."

the other thing was this whole "but we're not gonna tell her" thang that i believe is common in dysfunctional families.  in lieu of a life spent loving one another, there is a concerted effort to show loving control at life's end.  they want to keep certain medical information from her... "she would be upset to know x, to know y..."

but it would at least give her something to think about besides how nice it would be to put some plush carpeting in the family room or how to best clean the stains on the grout in the kitchen.

so anyway, today -- it's going to be a difficult day for me.

for lots of people.

Tuesday, February 28, 2012

on the lighter side

As recorded by a wobbling hand in the back pages of my beloved Moleskine Classic Pocket Ruled Notebook [red]:

i.v. team nurse breezes in. i know she's a nice person. i've had her b4.
ME:  i need water.
HER:  u don't have any water?
ME:  nope & i need some.
HER:  i'll be back.  i need an alcohol swab.  [never returns]

7 AM blood glucose 59
called nurse's station x2 for OJ -- no1 came
called x2 for breakfast -- no1 came
called dietary directly x2 [busy]
x1 got 'em! they tell me breakfast cancelled in advance of MONDAY surgery [it is SATURDAY!]
the lady on the phone & i figure error out
@11:13 am, got breakfast
did not die

Thursday at One

From Holly Mcrae's most recent update to her CaringBridge journal about her daughter Kate's journey with cancer:

[She shares how God has led them thus far...]

[T]here are days I fear losing sight of what God has done for Kate if I don't voice it. If I don't reflect on His provision in the past, and trust He will continue to carry us into the days ahead.

My reflection is due in part to the angst for the days ahead this week. First, Wednesday Kate will go in to see if her kidneys are strong enough to receive the current chemotherapy she is on. We opted to take it a month ago, despite guidelines against it. Two weeks ago, we didn't. And the drug was held. If her labs are not within parameters for her to get it this week, we will be forced to discuss the possibility of discontinuing this treatment.

I have spoke to various institutions and am so grateful for their kindness in helping us sort through the very limited treatment options for a recurrence of this disease. Our most likely option would be to stop all treatment and watch and see if new tumors arise. Exhilerating to think of her not being on treatment. And equally as overwhelming knowing the heavy risk involved.

Which brings us to the MRI. We have opted to move it to this week, as there has been significant changes in the strength of her right leg. It is tremendously frustrating for Kate as she sees the last year of therapy quickly slip away in an instant. It's gut wrenching for us. So this Thursday at 1:00 she will be getting her full brain and spine MRI under general anesthesia.

Not much else to say... the implications are enormous. And our hearts feel them well. The emotions hit erratically and without warning. And yet I would be remiss to not say that we feel your prayers and love for our family. God will continue to be faithful, regardless of test results. We continue to cry to Him for mercy and healing for Kate, knowing He is able. Cry out with us. He hears the pleas of His people.

photo by holly mcrae

Monday, February 27, 2012

Metallothionein Deficiency / Abstract and References

PAIN [The official journal of the International Association for the Study of Pain]
Volume 153, Issue 3 , Pages 532-539, March 2012

Metallothionein deficiency in the injured peripheral nerves of complex regional pain syndrome as revealed by proteomics

This work, for the first time, revealed molecules central in intractable pain in complex regional pain syndrome (CRPS). Metallothionein, a very strong free radical scavenger and an anti-inflammatory mediator is lacked in the affected nerves of CRPS. This work may shed a light in pathology of this intractable algetic disorder and open a new paradigm in this difficult condition.

Complex regional pain syndrome (CRPS) is characterized by persistent and severe pain after trauma or surgery; however, its molecular mechanisms in the peripheral nervous system are poorly understood. Using proteomics, we investigated whether injured peripheral nerves of CRPS patients have altered protein profiles compared with control nerves. We obtained nerve samples from 3 patients with CRPS-2 who underwent resection of part of an injured peripheral nerve. Sural nerves from fresh cadavers with no history of trauma or neuropathic pain served as controls. Proteomic analysis showed that the number and functional distribution of proteins expressed in CRPS and control nerves was similar. Interestingly, metallothionein was absent in the injured nerves of CRPS-2, although it was readily detected in control nerves. Western blotting further confirmed the absence of metallothionein in CRPS-2 nerves, and immunohistochemistry corroborated the deficiency of metallothionein expression in injured nerves from 5 of 5 CRPS patients and 2 of 2 patients with painful neuromas. In contrast, all control nerves, including 5 sural nerves from fresh cadavers and 41 nerves obtained from surgically resected tumors, expressed MT. Furthermore, expression of S100 as a marker for Schwann cells, and neurofilament M as a marker of axons was comparable in both CRPS-2 and controls.

Metallothioneins are zinc-binding proteins that are probably involved in protection against injury and subsequent regeneration after CNS damage. Their absence from the injured peripheral nerves of patients with CRPS-2 suggests a potential pathogenic role in generating pain in the damaged peripheral nerves.


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