by way of explanation...

i feel like my life is a bad short story -- no longer feeling that thurber vibe -- that is being passed around a truly sucky creative writing class for bad peer editing.

yes, it's a pity party.

i am also sunk in a weird origami configuration designed by my equally moody hospital bed.  why don't i "fix" it?  well, l'il mister know-it-all, no configuration seems to help.

you see, we had another perfect storm drop by for a day -- yesterday.  that would be wednesday. instead of recovering through blessèd unconsciousness, sleep just made my clothes stick to my dirty, sweaty body, and the setback to my leg does not encourage me to travel on foot to the bathroom to wash up.  too much information?  you gotta be kidding me.  o, what i have left out!

my right hand is really getting into its new and sudden reinvention as a lobster claw but as someone who enjoys having hands, i'm going to go with... dissociation.  denial.  maybe anything that starts with "d," though please exempt me from diarrhea.

what?  you want decorum?  well, it is a "d"-word. another "d"-word in play around marlinspike hall? d-d-d-d-aptomycin!

think good thoughts about these short infusions of dapto -- because after 5 straight days of improvement, one day as clusterf*ck has made my right leg bright red, red hot, and is causing me to see red, as the intense i-am-gonna-explode-strep-and-staph-through-this-shiny-thin-crimson-skin feeling mounts.

considering that i toned down the actual levels of clusterf*uckedness that was encountered at the time of the writing of the following email, and considering that it left out all that came after?  well, to tell the truth, i'm ashamed of having sent it to my sweet cancer-fighting, ignorance-smasher of a brother... but relieved that i could get it out of my system.  i assumed things were gonna get better overnight, of course.  i am, of course, a bona fide idiot.  my bona fides is writ large throughout this blog!

the dear brother unit?  lumpy, of grader boob fame?  he sweetens.  i know that we all waver in our glucose levels... and remind myself that he has every reason in the world to be an addlepated sour puss.  well, bless him if he's faking, and bless him if he's not.  just bless the boy.

my hopes of goading him into regaling me with his accumulation of medical snafu guffaws, and tales of his own narcissistic pity pit mud roll-abouts?  pure projection on my part, as they don't exist in lumpy's world.  his few medical stories are kind-hearted, or born of pure consternation.  as opposed to tainted consternation, like mine own, which incorporates blame, lots and lots of blame.

anyway, my first instinct on surviving half of wednesday was to check emails, hoping to hear from ANY AND ALL SIBLINGS.  oh?  did i have the CAP button locked.  oopsies.  dimpled oopsies! wouldn't want my siblings to think i was YELLING at them.

yes, damn it, i know, they are working, all of them, and working hard, and not at things they love. STILL!

okay, so i checked my inbox and found, in the middle of leftist, "progressive" donation-grubbers, this gem from the aforementioned lumpy:

Hulloo--
Wanted to check in to see how your latest medical adventures are going.
Hope you're finding some relief--you deserve it.
Had an angry talk with Mom yesterday, which ended with her hanging up on me. Don't quite know what to say to her when I call back. I think I finally got some of the vitriol that she usually dumps on [ANOTHER SIBLING].
Well, quite the family!
Love to you and Fred and the clowder!
Lumpy

a word about our mom!  she's a very sweet lady, especially if you're sort of the black sheep stepchild who doesn't irritate her by helping her with wound care, appropriate living facilities, the general loss of independence, and advancing dementia.  in other words, i don't call, and i don't help out -- so i am golden.  she has developed a mean streak and has little inhibition.  given her advanced vocabulary and gift for drama (she's forever a ballerina to me...), i bet her tongue lashings are sharp, indeed.

hopefully, when brother lumpy calls back, she'll not remember their prior encounter.  

that sweet little email was all it took for me to spew forth the accumulated bile of my small bad day, even as i was cognizant of his suffering.  a soul had reached forth, a hand had come through the fog -- i was surely going to snatch that soul, and wring that hand!

and i did:


first, i love you!  i love you for even ASKING, since you know i'm gonna bleccckkkk it out anyway.  there's no definition, of which i'm aware, for "bleck," but trust me, it's the appropriate word...

second, i love you again!  i love you for asking when you now have tales of your own that make mine but childish diversions.

we just walked and rolled in the front door, not speaking to one another, not out of anger, just from being drained of our humanity. i don't know if fred still loves me, but i know we're great friends.  only true friends are able to flip the "i am not mad at you; i cannot speak to anyone right now; thank you for understanding; check back with me in, oh, an hour or so, when the nurse arrives!" switch, wordlessly.

but it does leave me lonely!

we drove 100 miles when -- done "right" -- 25 would have been slightly more than expected.  i don't do well in the car, pain-wise, and cannot imagine how you handle things like curves, bumps, swerves, seatbelts, and spasming legs crammed between canes and backpacks.  surely there's an effing APP for that?

whose rotten directions caused this extended trip?  kaiser permanente's own directions, verified, triple-checked, printed out.  we got to the pain management appointment at 8:40 instead of 8 AM and therefore they refused to see me.  

we produced the directions and begged.  a nurse deigned to pass our begging forward, and lo!  the CNP agreed to see me after all. she was nice, and only screwed up a few things!  then, i was sent to pee in a cup for a drug screen.  i told her that i'd recently been given i.v. dilaudid and morphine, various doses of fentanyl, percocet, and god knows what else. 

"but no street drugs, right?" quipped mary jo.

"you betcha, no way!" -- i chimed in, reverting to fargo linguistics.

the lab waiting room held all of 3 waiting people, and 2 of them were "care givers." so we did as instructed and took a number.

the lab tech was sweet as all get out.  he looked at me, a grinning fool, one foot the size of a purplish-red house, the other doing a private tap dance, one hand splinted and sporting a dangling PICC line, the other gripping the backpack that bianca castafiore swore was gonna make life easier than my old purse.  oh, yeah, and the wheelchair, revving its engine like some fancy back street race car.  then he said these beautiful words:

"let's see what we can do to make this easier on you, ms. profderien!" 

a wonderful man, that man.  and i didn't get his name so that i could fill out an online praise form. something positive is needed as ballast to my soon-to-be-submitted grievance about having to pay $369 for drug screening every month!

we were then sent to neurology, as everyone opines that my brain is a mess, but there was not a living soul on that third floor, my lumpy brother, not a one!  fred, still endeavoring to speak, and in kind tones, asked, "can we go home now?"

okay... getting lost on the way home was my fault.  i violated the "no talking" rule and fred took the east route of some highway when we needed the north-southwest-slightly eastward exit/merge.  i did not violate the "no talking about sickness, pain, discomfort, or death (actual or desired)" rule.  no, i was ranting about how lefist/progressive groups were clogging my email inbox with diatribes and manipulative guilt trips that were identical to tactics that leftist/progressive groups adore pegging as right wing, extremist evil ways.  i'm not a giver at the koch brothers level of "generosity," but every penny i give carries more inherent value than one of their fat earlobes. i will make phone calls on behalf of gun control, for or against legislation, and to promote decent legislators (3 in the last 2 years.... one of the three, the county CEO, is on trial now, another, a crusading county commissioner, just pleaded guilty to fraud, and the third hasn't even gotten a traffic ticket, much less doctored the county budget -- but he's not yet been elected! 

surely my political ramblings did not distract fred, causing us to go 20 some miles the wrong way?

however, the look on his face at that point nicely conveyed what words could not, and so i've not spoken since... while he is de-stressing by slamming doors, cabinets, and breaking dishes!  i haven't been able to get in the belovèd bed because of the need to wield a mop between breakages.  i don't want the nurse to think i am unable to "keep house," or she might toss me in the freaking LTAC (look it up... they keep saying that's where i'd be "most comfortable," the asswipes).

the nurse was to be here a half-hour ago.  no, 36 minutes ago.

oh.  what did you ask? ah. a ridiculously terse, two-liner:

Wanted to check in to see how your latest medical adventures are going.Hope you're finding some relief--you deserve it.

the i.v. antibiotics are working, but slowly.  this morning's adventures made the right leg double in size, but soon i'll have it elevated and all will begin to shrink.  the nurse will draw blood, change the dressing, fred will nap and rejuvenate, and i'll peck at this keyboard to all my virtual friends, a surprising number of whom live in wyoming and the dakotas.  yep, a bunch of cowgirls -- for real!

okay, blessings to you, because typing this full-of-woo email has given the 15 mg of generic percocet time to kick in.  you've allowed me to type my way back to moderate sanity.

the hand, unlike the foot, is not improving. one of the things my new pain management CNP "helped" with was my referral to occupational therapy -- changing it to "physical therapy." PT does not treat HANDS.  why, no one knows.  OT owns the hands.  so now i get to start over with an appt to the wrong specialty.  smile, smile, smile!

NOW... what in heck did mom go off about?  i am now SCARED of the woman! that teeny, sweet lady! does she know ANYTHING about your afflictions (southern gothic lingo now... it's a regional tour!)?  i won't mention mine -- hard to believe, but i usually don't go on and on about it.  i was hoping the namenda would help her dementia but there is no drug that cures having one's world turned upside down, just when a person ought to be able to expect some respectable stability.  and missing a loved pet is just like missing a family member.  where IS daisy living, anyway?  "rehoming" sucks as a verb, but that's the verb to use.  dear OTHER SIBLING must rehome roly-poly daisy.  

i've heard nurses say countless times that little old people fight an uphill battle against cognitive decline as soon as they lose their home environment, and it breaks my heart that mom is caught in that scary place.  THAT OTHER SIBLING is a brave, strong soul.

and you, mein dude, you must respond very well and very quickly to these bursts of precision radiation.  you're overdue decent pain relief. you deserve lump shrinkage, an appetite, a cooperative, pliant, compliant  gut.  

[....]

yay!  nurse and confused nurse trainee came, took blood, left gloves and used supplies strewn about.  but they taught me a new joke.

ready?

"what do you call a cow with no legs?"

GROUND BEEF!

also, the not-so-successful:  "what do you call a cow with 3 legs?"

LEAN BEEF.  (i did not get it.)

i kiss you gently on your lumpy skull.  anything, anything i can do, just ask or bark the order.  it's done, it's yours. thank you for reviving your joshing, gentle voice -- but you can still be any damn way you please.  we are resilient in Tête de Hergé.

[....]

okay, i'm done.  peace on ya, on mom, on us all!

smooches galore --

profderien,

retired educator

© 2013 L. Ryan

i have happy fingers!

i've no idea where the title for this post came from, but that's what i was merrily crowing into the air when i woke up -- that would be the first waking, around 5 am.

since last i wrote you, darling readers, so much has happened, and enough time elapsed between frustrations, that the tale should be told by a reincarnated james thurber.  it could easily rival the stories of his grandfather in the attic, the great flood waters on main street -- were a reincarnated thurber around.

i'll check the closets.  you never know.

another hospital stay, from which i was delivered last evening.  it was not so bad, except for the usual incredulities.  and the foot that looked like this on thursday --

now looks like this:

ah, but i flag already.  we're waiting on a cheery-sounding home health nurse named linda to trundle across the drawbridge with the magic antibiotic elixir encapsulated in those clever elastomeric devices.  fred will have the honor of attaching the medicine balls every day, and linda or a linda clone will check up on us, change the PICC line dressing every few days, and draw labs.  i already am having an allergic reaction to the overnight reaccumulation of med/surg supplies, delivered by courrier "stat": alcohol wipes, syringes of saline flushes and heparin flushes, and something called "lab in a box," about which we are beginning to create bad jokes.  

and fred's hands are already shaking, as PTSD shadow memories of the horrors of early 2012 creep back into both our heads.

so i quickly revisit my joyous cry that met the day:  "i have happy fingers!"

unfortunately, i was given the funereal announcement of "this is your new normal" regarding the changes in my right hand.  it's pretty close to non-functional and getting more painful.  the index finger, however, is making a valiant stand.  a wondrous OT named carol actually constructed a specialized brace at bedside.  it looked like a combination cooking demonstration and high school shop class.  she had a non stick frying pan and a supersonic hairdryer-looking thingy, and strange little molding tools.  she heated the brace material to 160 and molded it to my claw, then went to work like a mechanic-slash-sculptor.  when things cooled and hardened, carol deftly softened edges and covered the irritating parts -- and that would be... every part -- with some sort of moleskin.  we drew a crowd of admiring spectators.

so it's neurological, part of crps, this nearly overnight reconfiguration of my hand into a claw.  hence the funereal "new normal" crap-out.  that phrase is like fingernails run across a chalkboard and gets no reaction from me except contempt.  no treatment to try?  nothing?  just this blithe "new normal," as if further disability to an already disabled person must be no big deal.  it's just my dominant hand. that leaves a damaged left hand, which, they don't ever recall, is at the end of a limb that lacks an anchoring shoulder.  so while it may work, it has a very limited range of motion.

"new normal." i'd like to bop someone on the nose, the sad, ineffective person who came up with that defeatist phrasing.  see, once that phrasing becomes the adopted line, any reaction from me that betrays my contempt for the wussy concept can then be labelled "denial," allowing the health care practitioner to go "tut, tut."

"tut, tut," goes the health care practitioner.
"bite me," responds the frustrated patient, waving her fugly hand around, hoping to land a lucky jab or a consciousness-depriving haymaker. Health care practitioners have glass chins.

then there were the physical therapists intent on telling me that i cannot possibly wash, dress, or feed myself, and wouldn't i be happier "somewhere else," rather than in the luxurious but demanding surroundings of marlinspike hall?  that's when i cry.  blubbering fool, i say intelligent things.  "not yet." "i can do it, i can do anything."

then i am saved by laughter, because the inevitable arrives:  "you simply cannot live with this much pain -- you just can't!"

part of the reason my pain levels were off the available charts (when we zoomed outta there last night, there was a bevy of nurses working feverishly with poster board and sharpies, making new charts to accommodate a revised pain scale), was due to a medication error that we decided not to divulge, preferring to laugh in the hyena manner.

a lovely, pragmatic group of hospitalists spearheaded the attempt at my care.  they decided that i was grossly undermedicated for pain, bless their everlovin' hearts. the first prong of the attack was intravenous dilaudid which made me grin like a perfect fool, and enabled a marvelous nap.  the heart of the new design, though was to begin bumping up the dose of the fentanyl pain patches i wear for three days at a time.  my usual dose is 100 mcg.  we decided to go to 125 mcg, and to be more liberal with the amount of breakthrough medication i could take.

at the time of these pharmaceutical decisions, i had a very nice RN who was, however, attached to The Big Book of Nursing by the hip.

"i have your new patch here, would you verify your complete name and date of birth, please?" she exhaled in a single breath with a friendly mouthcentric smile.'

"alter ego to bianca castafiore and januarymumblemumblemumble," i proffered.

then the idiot in me said, "you do know i am wearing a 100 mcg patch already, don't you?  should i take it off?  it just went on yesterday..." (they're also kind of pricey.)

"oh, goodness me! remove it immediately!  we cannot let you use medication from home! tut, tut!"

so i ripped it off and she disposed of it using universal precautions and a brow-furrowed, lip-pouched face of disdain.  then, wrinkles smoothed, order restored, she applied the new patch to my upper right arm, which i cannot reach with my left hand, but no matter!  here we were, nurse of the Big Book and i, improving my plight by mutual admiration.

my pain levels went wild.

that's about as descriptive as i care to get.

when we dumped my backpack and rucksack on the bed, i began the task of sorting through paperwork and cats, getting back on schedule with my meds, dissuading buddy from playing tether ball with my new PICC line, the usual. i made a pile of "important papers to look at when i'm able to read at a first grade level."

one caught my eye -- a prescription.  it was for several boxes of 25 mcg fentanyl patches, "to be added to her supply of 100 mcg,"

aha.

after having fred peel off the latest patch, it did indeed turn out to be a 25 mcg patch.  The Big Book of Nursing accords "doctor's orders" the reverence of the tablets of law descended with moses from mount sinai. so i'd been given, not a 25% increase in fentanyl, but a 75% decrease.

anyway, i'm home again.  that's progress.

postscript:  it was a cindy and not a linda who trundled over the drawbridge, right on time and neat as a pin, smart as a whip, pragmatic, and satisfyingly swift in the completion of her duties. plus, the new abx can be injected over 2.5 MINUTES.  piece o'cake. she did an early dressing change and so won't have to come back until wednesday.  an excellent cindy.

and.to all interested siblings and other sweetie-pies, i spoke with lumpy, the former grader boob, and he sounded better than he has for a long while. by which i mean there was some laughter, more specifics supplied about his lumps, and some elaboration of the 15 days straight of palliative radiation he's starting next week.  true to form, he has concerns for the techs who will have to work weekends radiating people's lumps. oy!  he retains world master status at deflection and minimization arts, as well as at owning my heart.  he's already had round one of student conferences, and hearing his lively tone, i hope he can hang in there with classes, somehow, someway, because he was himself again. he was living.

brayden martin's memorial was yesterday -- i had planned to plan to try to go, but couldn't. i saw a video of it that served a purpose.  kate mcrae's surgery went well and she should be out of ICU this weekend.  in very sad news, ethan hallmark went to clinic expecting to get chemo and instead went home on hospice as they discovered "hundreds" of tumors in his abdomen.  ethan may only live a few more weeks.

i hate cancer.
but i have happy fingers!






© 2013 L. Ryan