As the fog dissipates

I've been putting off blogging, though each day, lately, has proffered plenty of blog-fodder!  My head is not screwed on correctly, my memory is pretty faulty.  The people, animals, things, and activities that normally are my nominal saviors have fallen down on the job.  Or wised up!

Housekeeping:  The brave Ethan Hallmark died a few days ago.  You already know about the effervescent Brayden Martin.  His mom Maranda, brother Mason, grandmother Robin are blessed with the support of many friends, family, and memories.  Maranda's many off-the-cuff phone vids of a giggling Brayden, which, quite frankly, were starting to drive me crazy, now show themselves each as little jewels, shining, shining.  She did a great job raising that child and simply mowed down any circumstance that even hinted of getting in the way.

We were going to give Brayden one of my spare power chairs (that's right! my riches know no end!) and were even trying to make some adjustments and improvements, because he was a little boy, and, well, I am not.

Sven got out the Marlinspike Hall Treasury of Blowtorches and reconfigured the mind-boggling cloverleaf pattern on the underbelly of the chair.  Bianca Castafiore offered free picks of fabrics from her costuming collection that has clothed thousands of operatic divas over the years.  When she saw me with a glue gun and her precious Christian Lacroix courtisan costume (Hey! It was in the pile she said I could use!) -- she manhandled me.  Pins in her mouth, pinking shears, and microsurgical instruments strewn about, she cursed me, though I couldn't quite tell to what I was being condemned, or in what language. I heard some gutturals -- she may have gone Germanic on me.

Finally, spewing pins everywhere, she hollered -- and yes, Milanese operatic divas can and do "holler" -- "Retired Educator, you bilious brain fart! Brayden loves ORANGE and THIS is a wheelchair, hardly conducive to being covered in crinoline and skin-irritating brocades. What is wrong with you?  Go look in the mirror. You have "crétine" tattooed on your forehead..."

A courtisan costume designed by Christian Lacroix for the SF Opera's , "The Capulets and The Montagues,"
at the SF Opera's costume shop on Thursday, Aug. 23, 2012 in San Francisco, Calif.
Photo: Russell Yip, The Chronicle / SF

Well, in the end, it was beautiful and no one would ever notice our judicious use of duct tape.  I tried to ignore Captain Haddock's remark that it looked like a jeepney.

But something we'll cave in and call "circumstances" intervened, and our jeepney-opera inspired reinvention of a power chair ended up with a local woman who "needed me one of those," and we were glad it went to be of use for someone.

Brayden on wheels.  Laughing Brayden. That's mostly what Maranda showed us.  Well, there was courageous Brayden, miserable and steroid-cheeked, but still giving a thumbs-up, and laughing on command.  Such bravery in a kid gets its own reward, and so I am, guiltily, happy for him.

Ethan. I worried about Ethan, not in any specific Ethan-way, but in a general why-do-these-kids-have-to-be-so-god-damned-perfect way. Whenever he was presented in normalcy, and this young man had a lot of rugged, good other young men who visited daily, that's when I connected with Ethan.  As anti-hunting as I am, it was thrilling to see him "bag a buck" a little over a week before he died.

And I have no right to knock the ways in which people survive, and survive in horrid circumstances. My own circumstances lead me to find comfort in beauty, less and less in books, paintings, movies, and the quieter stories of derring-do, more and more in the actual eyes of actual people. Okay, okay, I'm also in awe of people who do the darnedest things.  I'm thinking of the Infectious Disease PA -- one funny and smart Ava Cooper -- who had a burning desire to see the underside of my Accursèd Right Foot.  Now, this could have been accomplished in several ways, most of which would have been painful, as the Accursèd Right Foot has taken on life in its own inimitable, separatist way.

Did I mention PA Cooper's outfit?  No?  Well, she reminded me of me, some mumblemumble years ago as I trekked about Berkeley and walked from UC-B to San Francisco, over the Golden Gate, and into Marin.  In other words, she was cute.  Black leggings and a striped tunic, happy to be alive. I think she had sparkles on her shoes, not sure.

So she lays down on the freaking floor of this exam room in the Infectious Disease Clinic, her left ear on the pristine floor, black hair cascading over the antiseptic tile, and peers at the butt ugly sole of mine foot.

I mean, doggone, woman, I'd be glad to prop this useless appendage on that green plastic chair over there... or you could lay down on top of god-knows-what bacterial Soup of the Day!

But it just confirmed my gut knowledge that ID specialists are unique and special, in other ways beyond their quirky, nerdy science.  Same goes for the guy we call "Sherlock," Dr. Phillip Brachman. The man cracks me up.  He does me the honor of taking whatever I say at its value.  Last time I saw him, I was sobbing, rocking, in misery.  I felt, however, that he needed to know I was listening and capable, even with snot running down my face and badly applied eye makeup smeared in avant garde fashion into a hairline fade.

"I only cry when I spike a fever or feel really rotten but it doesn't mean that I'm not HERE."

Only a good doctor would address that with a slight nod and continue his Sherlockian machinations with computer and pharmacists online and on the phone.  He does not remember the day that I decided he was the cat's meow.  It was way back at the beginning of the Lose-A-Shoulder-To-A-Biofilm-Infection saga.  Maybe 2007 or 2008.  I was in the hospital and for some reason, in isolation (musta been one of those MRSA scares), and had the deep need to exit my bed and get into my wheelchair.

Isolation rooms are often neglected rooms.  Things are brought in that can't then just be taken out, without a hullaballou of cleaning.  So my bed was surrounded by every bit of equipment imaginable, from IVACs to bedside commodes (3 for some reason that I don't even want to know...) and extra bedside tables.  It was a sea of redundant medical schtuff.

I managed to climb over the rails, not pull out any i.v.s or detach monitoring devices, keep the foley catheter intact (though I forgot to nab the drainage bag, still hooked on the bedrail) and shove a path to the wheelchair.  It's *possible* that I was febrile and hallucinating.

Once ensconced in my chair, I surveyed the room and burst into... you guessed it... tears!  There was no where to go, no direction to point my joy stick, that was not blocked by redundant medical schtuff. And look!  My foley bag is over there, and I am over here!

The door to my isolation room pops open, and Dr. Brachman's head pivots about, figuring I must be in there somewhere.

He sees me trapped in the corner, surrounded by beeping machines, poop contraptions, and mobile tables with immovable wheels.  Dr. Brachman (formerly "Infectious Disease Dood") never wore protective gear.  No bright yellow paper suits for that guy, and rarely even any gloves.  :Lots of handwashing, though.

Anyway, even at that point in my experiences -- I was almost medically virginal -- I already knew that doctors don't "do" stuff.  They leave that for "someone." Someone in Internal Medicine. Someone in Radiology. Someone in Ortho, in Pain Management.  In this case, I would expect an even less elucidated "someone," like a lowly nurse, or the even more lowly patient care technician. But Dr. Brachman crowed something like, "Let's get you out of there."

In super hero fashion, he tossed equipment to the left, to the right, out the window, shoved stuff into the bathroom, and soon cleared a path...

So that I could humbly go back to bed.

The story doesn't tell well.  But it does mark the moment when I knew this guy was kind, smart, and funny as hell.

I don't want to lose you in this swirl of time traveling tale-telling.  Fast forward to... September 10, 2014.  I THINK that was the day.  It was referenced above as the weepy, snotty-nosed visit to Dr. B, after lo, these many years.  I saw him, was in unbelievable pain, so unbelievable that I'm not even going to throw adjectives at it.  He wanted several things.  A biopsy.  He actually went and dragged a dermatologist into the room ("She was wandering around the halls.").  He had, with a straight face, assured me that I did not want him wielding a knife or any pointy instruments. The dermatologist laughed at the both of us and did the standard, "I wouldn't touch that with a 10-foot pole" routine, and made dire threats about what would happen if the skin broke or were breached -- "It will never heal."

Pshaw!

Next he wanted to use a new antibiotic, administered intravenously, but only once a week.  It was the new gorillacillen: Dalvance (dalbavancin).  No matter that it wasn't in my insurance carrier's formulary and that getting it to the nearest infusion center would require calling out the National Guard. Oblivious to the fact that while he was an established Super Hero, the rest of the organization was peopled by mere hard-working humans.  "We'll work out the details.  I am trying to make things as easy as possible on you." Be still my heart!

Finally, he wanted an MRI. I tried to squash that idea, knowing how much orthopedic hardware is buried in my corrupt flesh, but he muttered something about "the radiologists will figure something out." This after everyone and their brother (and their sister) had wanted MRIs for the past 5 years but were denied, every time!

And Lo! (the Angel of the Lord), if his nurse didn't come sprinting out to the very carpeted waiting room, where I was gently waking a dangerously tired and grumpy Fred. "Your MRI is this afternoon!"

She handed us the order as well as the address of the place (far, far away), complete with a map. I don't know if I blogged about the rest of the day -- it had the makings of concretizing any loose PTSD symptoms Fred and I had managed to scrape off our souls.  The directions turned out to be to a Dental Urgent Care facility, located in the boondocks of a half-occupied strip mall.  A missed photographic opportunity, for sure, was the look on the ultra-plucked, hyper-blushed "fresh" country face of the 19 year old dental receptionist's face.

Me, red-eyed and sweaty, with a leg that looked like Mt. Vesuvius about to make history:  I'm guessing that you guys don't do MRIs here.

Bug-eyed receptionist:  No, ma'am.

There followed the saga of how phones don't help ya much when your call swirls at 28 mph in the perpetual vortex of "Customer Service Representatives are busy helping other customers.  Please continue to hold. Your call is very important to us.  For faster service, try logging on to KP.org!"

Have I been less than kind lately when speaking of Dear Fred?  Yes, I have, even if only in my very cranky, confused brain.  The man told me, not terribly politely, to "shut up, just shut up," and grabbed the sheath of helpful paperwork out of my right claw.  We were, of course, late now for the bleeping MRI.

Fred managed to do the following:  figure out where the nurse had intended to send us; close his eyes and retrace our meandering path to the strip mall, and (after opening those beautiful eyes again) drove us to a neutral point on the map now in his head.  And then, gasp!  He stopped and asked one of the indigenous  population where "X bleeping road might be." He was given landmarks, the only one which either of us remembered being a "Waffle House."

Yes, of course, we got there.  I forked over a $350 co-pay, and the lady said I was lucky because some poor soul had coded in the MRI suite and "they're still working on him, so they're behind anyway!" Hooray!

Anyway, we got it done, but the rest of the week was difficult due to my leg not appreciating hours on the road, and so on, and such froth.  The new antibiotic was all set up for Friday, then cancelled Friday morning.  I ended up in the ER/ED again, admitted again, and Plan C, D, or E was implemented.  Got a PICC line inserted and was started on Daptomycin.  Home nursing was set up.

Doctor Brachman went on vacation that Thursday, bless his bones.  Several nurses suggested that he might be autistic.  At my protestations, they'd say, "O! You like him.  Well, he's very talented at what he does.  People say he's a genius." Wily, crafty nurses.

Things began to go swimmingly.  The next four days saw slow improvement, and Fred easily fell back into the PICC line routine, and with good humor.  I was able to briefly stop observing my own navel lint, and consider the lives of people I love.  Somewhere in the middle of all that, Brayden died, Ethan was suddenly on hospice, Kate McRae suffered her third brain cancer relapse, my Lumpy Brother began radiation (complete with his own stories of clusterf*cks), my Amazing Stepsister continued to amaze in her care of our declining stepmom.  Even the stepmom amazed, as she unveiled the "dark side" of her personality, yelling at sweet Lumpkins, "Why aren't you here helping me?" That must have felt like (yet another) punch in the stomach for sweet Grader Boob. Anyway, I caught up on almost everyone's misery, finding strength in these beautiful people suffering so much more that I ever had or will.  They were still laughing through the tears, and I was tired of being snot-faced, so I did some cosmic chuckling.

Then we hit the next Wednesday.  You probably won't believe this.  We had an 8 am appointment with the Pain Management folks, a good thing as I had pain in need of management!  We also had found -- on the revered KP.org website -- and printed out the directions to this fifth new facility. Fred read them over, I double checked addresses, it looked easy as a deep dish cherry pie.

They were woefully wrong. Particularly the direction which had us turn left off the interstate exit, when the facility was about a half mile... to the right.  Easily a dozen roads bore the same moniker but swapped designations -- road, street, circle, parkway, lane, path-to-hell.  Fred didn't yell or snap quite so much, having witnessed my careful preparations up in the Computer Turret -- and getting up to the Turret in my condition was no easy feet.  Feat.

Again, the indigenous peoples of Jonesboro rose to the occasion, and our sanity-saving landmark this time was a "Steak and Ale."

I know!  I did not think there were any Steak and Ales left in existence, not that I'd ever frequented one.  Before Fred, and even ten years into Fred Time, I was a vegetarian.  If I had more red blood cells, I'd be going back to it.

So we got there... my leg now throbbing and growing, CRPS going nuts from more car stress.  Ruby the Honda CRV is a true babe, but when Fred is in NASCAR mode, she's not the smoothest babe on the road.

They refused to see me.  I begged, finally, waving about the KP.org directions, squealing nonsense about how "It wasn't our fault... y'all fucked us again!"  That got me a short visit with the local Nurse Ratchet.  She actually looked at the directions, shook her head, disappeared for 10 minutes, during which time a humming, blank-faced Fred went in search of coffee but only found grape-flavored vitamin water -- and then she returned and said, gruffly:  "Okay, she'll see you."

There's more, but I want to get to the following Monday, somehow.  The rest of Wednesday the 17th we shall cover with the gauzy curtain of faulty memory.  Thursday, Friday, and most of Saturday were lost to me -- big ass fatigue and a CRPS tantrum, fever, the right hand a lost claw. The last half of Saturday, I perked up.  For some reason, the infection in my leg seemed to be localizing again, kind of going back to its original look of a lone volcano in the middle of the top of my red and purple foot.  By Monday morning, I was pretty sure the thang was gonna blow.  "Good thing," thought I, "that Super Home Health Nurse Cindy is scheduled to come change my PICC dressing and draw labs. She can tell me if it's gonna blow -- and what the heck to do if it does!"

Poor Fred had been up all night, hitting the hay at sunrise.  So I decided to get up and toodle around the Manor, doing very small tasks and tending to very small animals (the Captain's husbandry interests in miniature species shows no sign of flagging... and then, of course, there are the three cats).  I let up whenever the volcano rumbled, but needed to be up to let down the drawbridge and pry open the mock and heavy Florence Baptistery doors to let the good nurse in.

Cindy is the first health care worker I've ever felt comfortable with in my home (Hey, we may be squatters, but we love Tête de Hergé and the Haddock ancestral testament to wild imperial-and-material-ism!).

And she was about to put on a show of ingenuity.

As I finally sidled up to the fanschy-panschy hospital bed in my Road Warrior wheelchair, and finally maneuvered mine arse onto its thin mattress, my piece o'shit right leg gently knocked the laptop precariously perched on the leg of the bedside table.  I watched, in what seemed like slomo, as it tipped gently onto the top of that piece o'shit foot, the high point of which, Mount Vesuvius, appeared to be its desired end point.

Yelling, yelling, whining, etcetera. Nurse Cindy rescues foot, only to find red thick and very pussy lava flowing underneath the electronics.  As if of one mind, we both said:

"We need to get a culture sample of that!"

Nurse Cindy became Nurse MacGyver.  She helped me haul the rest of me into bed, then sprinted to her car, and around the vast Marlinspike Hall in search of sterile implements.  In the end, with sterile gauze, she sucked up some of the "sample," placed it in a sterile vacutainer, and wrapped the whole kit-and-caboodle inside a sterile glove, then raced off to deliver it to a lab.

(The lab refused it.)
(But Nurse Cindy of Coram showed her worth that day!)

She also showed us how Fred now needed to, in as highly "clean," if not "sterile" conditions, change the bandage on the still-leaking foot, 3 times a day.  The first time he did it, I tried not to scream at Poor Fred as he donned gloves, removed the nasty, bloody wrappings, then SCRATCHED HIS NOSE.  In a well-modulated voice, I reiterated the instructions about what his hands were supposed to touch, and not touch, mostly for his sweet protection.  All I got was a "Did I really scratch my nose? I don't think so." Then he scratched his ear.

Fast forward to Wednesday, fast becoming my day of woe. September 24, 2014.  The day that went off without a hitch!  We knew where our appointment was, there was little traffic, we were even early!  And then I met the funny and smart PA Ava Cooper, the woman who plopped on the floor just to gaze at the sole of my foot.

I failed to mention that, thanks to Nurse Cindy MacGyver's instructions on wet bandaging, we had kept the volcano flowing... so that PA Ava Cooper could take a culture sample using the boring old typical tools of her trade! She acknowledged that the foot and lower leg were once again crappy looking (I forget the medical terms).  Another week of intravenous Dapto was ordered.  And we were back at the drawbridge a mere hour-and-a-half after departure.

The other thing I failed to mention was that late yesterday, a message came to me that there was a test result.  We weren't exactly expecting anything to grow, given the Dapto and all, but damned if something did not show itself:  serratia marcescens, or as I like to call it, "S. Macarena." It's been labelled a "secondary" infection, and so, in secondary fashion, a second antibiotic has been added. Blame is assigned to immunosuppression.

The new antibiotic makes me fart.

There are worse things, and these productions are near odorless, although annoying.  Dobby, for one, is not amused. Buddy and Marmy look alarmed, gaze about, sniff, and then go back to sleep.

I'm very vague now, depressed over my hand, though I snagged an appointment for October 7 for an OT "treat and evaluate, make new splint" session.  I also gave up on the arseholes in Neurology, the Doctors Huddleston and Wilensky, and am going to give Dr. Cole a shot at not hurting, and possibly, helping me.  Though I think it's too late for this hand.  But maybe she can take on the new neck jerks, head jerks, visual anomalies, and the everlovin' leg conniption fits from CRPS.  Pain is, as the kids say, ridiculous.

There's also so much going on in our world, on this Earth, that has me fascinated, terrified, and full of crazed opinions.  I want to blog about Syria, Saudi Arabia, Iran, Iraq, Israel, Algeria, France, the U.K. (and Scotland!), not to mention all the home grown idiocy this republic is producing, the degradation of politics, the apparent impossibility of holding office and holding on to one's ethics at the same time... I also want to make some kickass cat videos.

And I want to comfort Maranda, but cannot, don't know her well enough, don't speak the same language, no way I could!

But I can leave you with this recent photo of Ethan Hallmark, a remarkable cancer patient, and its young victim, but also a cool and ordinary kid.  As the fog dissipates, smiles and damp eyes gather in the wake.  You can read Ethan's story, as faithfully recorded by his Mom, at CaringBridge, HERE

************************************************************************

Maranda loving on Brayden... and vice-versa!

© 2013 L. Ryan

Animal Horns and Conch Shells

I'm watching, semi-watching, the semifinal match between the man of my almost dreams, Novak Djokovic, despite his horrid haircut and ultra-slim cut wardrobe, and the tenth-ranked Kei Nishikori, who seems extremely self-possessed, given the situation.  It's fairly early in the first set, I just got here, my attention waylaid by a fine early performance of Detective Goren in one of the first episodes of Law and Order: Criminal Intent.

You know back when he's still considered a nut job with nothing to offer.  As opposed to the later episodes where his status as a proven nut job has morphed into a touch-not reputation for pulling the improbable out of his ass.  His invasions of personal space, violations of suspects' DSM oddities ("pushing their buttons"), his empathetic powers that would render your average NYPD dick insane within the length of one long day, they can be sufficient grounds for keeping the television tuned on L & W: CI for a background marathon while I research the various and the sundry, in distress, in pain.  I can eyeball whatever suspect is being Gorenized in the Interrogation Room, and remind myself that things could be worse.  I could be in a room with gray cinderblock walls, a mirrored window, locked door, and Detectives Goren and Eames, his head cricked, all jazzy-handed, her neat, under-made self smiling at me like a hungry anaconda.

Nishikori is pissing me off. After a LUCKY first set win, despite his excellent play, and Novak's plethora of stupid errors, Djokovic handily stepped up and took the second set 6-1, at which point I indulged in a D'Onofrio rêverie of tics and lightening strikes of vulnerability.  Suddenly I discern a tiebreak going on, and in a ridiculous way, in the third set.  It is now set point, and I can't watch.

"Third set to Nishikori."

Bite me.

I know it means something when a person feels feverish but is in no way even close to being so.  I've felt weak and wiped out, working my way up the pain scale as if it were the easiest of climbing walls, with wild, nuclearized, toxic colors, grips of Seussian shapes, all horns and Roman clown noses.  I am broken. My instructions on being discharged Wednesday were to check back in at a local ER to resume intravenous antibiotics if (and we all thought "when") I had a fever of 100.4.

100.4 is nothing for me, or maybe the marker of a damn fine day.

I haven't been above 98.4 since we got home.  Despite chills, the aforementioned claymation approximation of a wild cartoon vertical cliff of pain, a weird appetite, the death of Brayden Martin, the relapse of Kate McRae, deep and abiding concern for my brother GB, weird episodes of suddenly passing out, having an arm not respond to my iron will, deciding that calling a doctor would just make everything incrementally worse.

I was explaining to one of the HMO doctors at their "overnight observation" facility how this all started with what looked like a huge abscess on the top of my foot, that presented itself as a volcano.  I apologize to you, as I guess I should apologize to the doctors for having only the word and image of "volcano" come to mind, as hard as this brain tries to offer another descriptor.  It looked like a freaking volcano, such that I thought, and hoped, that it might burst while I (again hoping) slept.  Instead it melted and turned the top of my whole foot red and painful, swollen and angry.

Her response?

"Do you have a picture of that?"

Did I have a picture of that?  No, I didn't think to capture that painful moment -- LIE.  I would have snapped it if I had two working hands and a camera that had not been dropped in soapy water!  Mostly because it's a weird thing to see a bluish/purple, slightly square-sided volcano sticking out of one's foot.  But over the past 12 years of having CRPS, seeing my legs and arms do weird things became normal.

Djokovic lost.  Rather, Nishikori did a fine job of winning.  Yes, Djokovic played badly, but had every opportunity to raise his game, and proved it.  He was out-played.

Now, to complete my accumulation of bad karma for the day, I am going to root against Roger Federer.  Or really screw myself over and wish him a tiring 5-setter with heat cramps, and an inexplicable case of recurring wedgies requiring the assistance of court side trainers, with Roger carefully hidden behind a wall of towels as he switched from wedgie shorts to wedgie shorts -- and then moves on to the finals only to lose against this very talented Japanese young man, Nishikori, in straight sets.

Yes, you read correctly.  The brave and steroid-bloated baby of an old soul, Brayden Martin, fell to an opportunistic pneumonia after being ravaged in brain and spine by odious cancer. I think he was all of six. I know he was wholly happy and attracted others who were happy, or needed to be.  He was a gifted air guitarist and was a freaking rock star. He needed to die and though I'm sure he'd have loved to stick around to watch the antics of his darlin' mother Maranda, and girl-magnet brother Mason, and nuggle in the arms of his grandma Robin -- he had plans for heaven.  Unfettered tricycling, soon to be a two-wheeler with snazzy training wheels, then, baby-wheels gone, pushed by angels with feathers flying wildly in the ether, finally pulling up alongside his buddy Nolan, lad by lad, finally free, finding the first off road exit from that boring cloud.  Thumbs-up all around, and a Di Fara pizza stand, straight from Brooklyn's Avenue J, perfect foldable plain cheese slices inhaled by these boys as they explore the lay of their new land.

There is a rain delay in Queens. So they are showing Federer and Monfils from... Thursday? The quarters, the round of sixteen?  Ah, Monfils, about whom I have conflicting feelings.  Sometimes, he cracks me the hell up, as he just did, calling for a review of a point he'd just won.  It looks as if the goofy, hot-and-cold Monfils is about to go up two sets to love. Federer had to dig himself out of a ditch, apparently.

I cannot sustain visions of an earthly heaven, not even to honor Brayden.  He's somewhere, and he's fine. His family has to stay here a while and right now their paradigm has been woefully insulted, and hearts, broken.

Kate began having seizures several weeks ago, after what seemed to be an uneasy good time, mostly filled with settling in a new place near L.A., new schools, therapists and doctors, and that weird feeling that something was wrong.  Every time they sought answers, problems were attributed to post-radiation and post-chemotherapy syndromes, sets of symptoms that complicate and depress, but do not threaten life.  But the seizures were different and the MRI was finally moved up, and showed new brain cancer, her third relapse.  Her spinal fluid showed no cancer cells.

These kids.

Ah, the rain delay is over, and Federer meets Cilic in real time.

I fret over sadness, and frustration with hands and legs, burning pain, and spasms, and whether I want to bother with continued treatment, anywhere, by anyone.  I think of the week my brother just had, and how I want to hold him in a way that would be foreign to us both -- but to which I'm sure we'd adapt easily.  I can't hang on to another soul for any meaningful length of time, and lord knows, he'd be darned uncomfortable. Just grant me a hand on his brow, a hand held briefly to hand.  This part of me does not work, whole sections of him are nothing but pain, it could be the weirdest of Twister configurations ever. Fitting!

And I dream every night some version of TW flying here, then having Captain Haddock ferry us from our murky moat, currently home to a sweet pair of beluga whales, to that Sweet Spot that heralds the worm hole entrance that loves to welcome Haddock's sweet pink miniature submarine, taking us there where we need to go.  "Ahoy!  I bring the siblings lost and found together again..." he hums as he pretends to navigate from our unmappable home to Grader Boob's hideout.

I cannot make it happen.
But it could happen.
That an accretion of stupidity and the idiocy of idiots gone before should hinder the reunion of such sweet souls?  I don't understand.

Good news.  My left hand has ceased copying my right, so I've a functional hand again.  I think I hear trumpets -- you know, the long silly ceremonial kind, or natural, chromatic.  Maybe animal horns mixed with conch shells .

Cilic is up 3-1 first set.

© 2013 L. Ryan

Update on Brayden, Hugger Extraordinaire...

For those of you who have followed some of the CaringBridge kids that have been featured in this blog, here's an update on the irrepressible Brayden Martin, his Mom Maranda, wild brother Mason, and super grandmother Robin -- and more friends and family than a person could count.

Maranda took him to the ER due to behavior changes and a mother's instinct.  There's been a determination of disease progression in Brayden's brain, with the inevitable side effect of swelling.  In a heap of bad timing, his port has stopped working, and he won't get another until tomorrow.  If an MRI confirms the CT findings from the ER, Maranda has made the difficult decision to take Brayden home on hospice care.

He's been on corticosteroids and so is obsessed with food, and despite the dire situation, this has brought some levity to their days.  Hopefully, he'll be off the stuff soon, and his mind can shift to other things than constant hunger.

Today, Ashley Klanac has established a fund to help with Brayden Martin's Hospice Care

The goal is to raise money to help Brayden's Family with his hospice care. Right now, we want him pain free and to alleviate as much stress on the family as possible during this time as they look at options. Anything you can donate will help in doing so. If you have any questions, please contact me at ashley.klanac@gmail.com

Nolan Blake and Brayden Martin

Valerian Root, Lemon Balm, and Hops

It's been a long day here at the Haddock Family ancestral manor, Marlinspike Hall.

I paid the piper for pitching in on ManorFest 2014 preparations yesterday, as well as giving the catacomb guest quarters a much needed spiffing up, unclogging one toilet and two medieval caricatures of a sink.  A few loads of laundry, trimming the hooves of our miniature Clydesdale herd, clipping the ferocious thick talons of Buddy the Maine Coon, and... well, I broke a rib.

That's a lie. I broke the rib last week.  Wednesday night, in fact, at about 10:30 pm.  It was another case of derring-do.  I showered (that's the "derring-do" part) and then reached for a fluffy towel of fetching cerulean blue (that's the "breaking the rib" part).

So my fit of physical exertion yesterday left me languishing abed today, though I always do my allotted morning chores.  Glad today not to have anyone witness me checking off those bits of manor-keeping, once done, I did my best impression of a beached whale.

It's just a rib, for Pete's sake!  Tiny bars of a cage, curvy and insubstantial. But oh, does it hurt when its delicate construction gives way.

We're fragile creatures, aren't we?

And yet, we are resilient, if fortunate enough to have grace in our lives.  Someone to pardon our blurted thoughtlessness, someone to model better behavior without underscoring how very, very stupid we can be. A Fred to offer pillows to splint the battered bones and ease the pain of breathing in, breathing out.

Though I despise the expression, I'll use it.  One of my "kids" earned his wings late yesterday.  Nolan, to use an even more disliked phrasing, fought the good fight.

He needed to die, that child, and his family was as ready as ready can be.

As if you haven't endured enough gnashing of teeth, rending of garments, and ash flying willy-nilly about this blog (worse even than cat hair is sanctified ash), I must also tell you that Brayden Martin has reached a new stage in his journey.  His cancer has returned with a vengeance in his spine, and in his precious, precocious brain.

Maranda has not told Brayden of Nolan's death.  I love Maranda -- she doesn't hide a thing, and she doesn't hide a thing because she's learned it's just a waste of precious time.  She wondered if she would even tell Brayden... but, of course, she has to tell Brayden, for Nolan was his best buddy.  But I love that she permits herself these moments that the rest of us edit out with such assiduity.

She'll worry about what to say, how best to ease Brayden into this knowledge, and she will, of course, find that her son had already begun to grieve.  Her words will be perfect, the curvature of her arms even better.

You've only to look at the two boys together last week to understand that all these difficult conversations have been prefaced by an easy, instantaneous look, a soft kiss, a knowing that precedes experience. We stifle that childhood gift at some point -- adolescence?  When we hit thirty?  As we round the turn at eighty-five?

Brayden and Nolan, May 2014

So Brayden's doctor, a very wise woman, I hear, told Maranda to take her crew and find a large body of water (with nearby swimming pools and Cabana Boys) completed by other kick-ass amenities.  So this is where they're hanging:

Blue Skies Ministries Retreat

In other news, Fred and I are weaning ourselves off of syrupy Colombian coffees and trying the lighter French roasts.  It's hard, but I think we can do it.

This year's ManorFest looks to be more of a community-driven effort than ever before, and ticket sales are booming.  Fred, however, had a severe allergic reaction to the preponderance of artisanal booth entries, and required emergency epinephrine when several local artisans waxed long about their week-old handcrafted products' patinas.  I slipped him some new wine and old cheese -- he bounced right back.

What with the devastation of Grader Boob's news, and the buffeting abuse of children running off to greener pastures, leaving us stodgy adults quite literally in the weeds, I've had a special memory of reedy, whistful singing -- a soft and breezy song used to say goodbye to a sweet friend.   I'd sing it for you but fear that la bonne et belle Bianca Castafiore might inflict great bodily harm at my off-key screeching.  So here's something far better --




I'm off to fetch some lowfat plain yogurt, with 3 packets of fake sugar (the kind dressed in blue), eight frozen strawberries, and some cinnamon.  It's the perfect accompaniment to my current Richard Russo binge, an homage to the always jesting beloved Brother-Units -- yes, both of them!

Another chapter of Straight Man under my belt, and by then, the valerian root, lemon balm, and hops from an hour ago ought to ease me out of this mournful Monday into the waiting wonders of Tuesday.

Be kind to one another.





© 2013 L. Ryan

Nolan laughing...

Nolan's mother Brittany wrote:

A few years ago Nolan was laughing hysterically on the couch and I couldn't help but think I better catch this on video. What if he looses his ability to laugh one day? I found it today. With tears streaming down I just listened to it over and over… I miss the sweet sound of his voice.
Brain tumors can take away your ability to walk, talk, eat, show emotions, smile, laugh and the list goes on…

Nolan is not doing well, so laugh for him today, send a good thought, send a prayer.  He and Brayden Martin are good buddies.

Nolan Blake, April 27, 2014

Brayden Martin and Nolan Blake
April 2014

Brayden Martin: Always on My Mind

Hi, Dear Readers --

It is good to be back after my hiatus dealing with spamming and reprobate relatives.  How did those problems work out?  Well, amazingly enough, the universe conspired to remind me what matters, and what does not.

If you're smiling, it's likely that you rank quite high on my "He/She Matters List."  It's akin to a gratitude journal in shorthand.

Relatives that I don't really know who are acting like hoodlums are hoodlums and, insofar as they do not cause my Mother-Unit stress or steal her worldly goods and happy outlook, they may merrily launch themselves off their local choice of cliffs.

Pornographic spam was generated due to my vocal refusal to allow truly suffering people to be taken advantage of by CALMARE / CTTC and the shady practitioners who are having a last ditch moment of money-grubbing as the whole affair circles the drain.  I think flooding my blog with porn spam is a bit ridiculous but these are not ethical people.

So let's concentrate on someone who matters.

Brayden Martin comes to mind.  He's had another rough spell, and, finally, his mom Maranda and his primary oncologist decided an early MRI to assess the efficacy of this new chemo protocol was warranted.
That happened yesterday and today Maranda and Brayden found out that, unfortunately, his tumors have doubled -- which was, I think, what Maranda already sensed.

She (and he, of course) is a tough cookie.  But no one is tough or ever prepared for this journey, be it the journey of a child or an aged beloved grandparent.  There is no preparation.

Brayden is charting new territory for relapsed pediatric medulloblastoma.  There are NO protocols to which they can refer for guidance.  And so Maranda and her guiding physicians, and her faith, are groping in the dark.

This is what she wrote today and it details the next treatment to be tried:

To just be blunt, the chemotherapy did not work at all. Instead of having two spots lighting up he now has 4. We have one option left and it was a road we were trying to avoid. Photon Radiation. It is dangerous with many side effects. Even the chance we could lose Braydens personality. I believe with prayer with everyone praying, we can keep those negative things from happening. With prayer we will keep those good cells from being damaged. With prayers we will hopefully get all of this cancer dealt with. I am going to pray that this treatment works and that he will come out the other side, the ornery, funny, little rockstar, we all know and love. Right now he is on a triple dose of steroid, that is always a ton of fun :o). Three weeks after the radiation is done he will start in patient chemotherapy. We were hoping this chemo would work, but I never had a great feeling about the treatment he was on, and this one I feel has a better chance of destroying this cancer. We have to stay positive. We are stronger than cancer will ever be. We love each other all the way to the moon and stars. We are going home this afternoon, there is no point and staying and doing in patient rehab, we need to start radiation as soon as possible. We will get back to doing therapy as well. Brayden went all over the hospital today in a little car, using his legs like a pro. He is tough as nails. I asked him if there was anything he wanted me to tell you all. He said that he likes to play a lot, with cars, and he likes to play guitar, and be a rockstar, and play on the Wii. We cannot wait to get home, this is an even more difficult place to be when you are sad. Every time he has progression it gets harder. I will continue to try and stay positive. We need some prayers to get through this meeting we will have this afternoon with Dr Aguilera. My Mom is here with me, and we are trying to find someone to come and sit with the boys while I go to this meeting at 3 o clock. We love you all. I will update once we are home and after my meeting with Dr Aguilera. 
                                           Love Always,                        Maranda, Brayden, and Mason 

We love you, Brayden!

© 2013 L. Ryan

UPDATED POST: do what you do...

UPDATE 6/23/2013

hello, you gorgeous loving readers, you!  i don't have it in me to write a whole new post about "my" caringbridge kids and families, but there are some updates some of you may appreciate.

sadly, ashley riemer died yesterday afternoon, but on her own terms -- at home, with her family.  her decline was rapid, such that some may call it a blessing.  she was up and about, even out shopping earlier in the week, and then on the 20th was brought low by pain.  hospice was ready, and her pain was managed.

she was elven; she was on the cusp of womanhood;  she was brave, ardent, angry, faithful.  she knew long before the blood tests and the bone marrow biopsies that this was the last fight.  i'd love to have known her at 90 -- i imagine blond and pink pig tails, cherry red lipstick and those cutting, pixie eyes.

her mom wrote, at the end of her post notifying everyone of her passing:  "Ashley donated her body to Georgetown Medical University as she was a lifelong learner."  damn straight.  good on you, ms. ashley.

brayden is on his make-a-wish trip, and enjoying it thoroughly.  like so many of my heroes, he is keeping those he loves and who love him, in laughter, no matter what.  his mom, maranda, writes:

I hope you all have had a nice week. I am sorry I have not updated, we have been so busy. The boys go, go ,go and then they drop. Brayden is totally in love with Blue Skies. He now is asking me to buy him, a jacuzzi bath tub- which he does not think would be too expensive. He also wants a golf cart- which he said should probably only cost about 5 dollars. 

brayden and his buddy nolan (nolan had to be admitted yesterday
for pneumonia, so good thoughts for brayden's best bud)

that's the end of this update.  i've discovered that crying clears up my vision much longer than eye drops.  keep brayden close to your heart, and ms. hannah, too, as she is in the midst of the planned destruction of her immune system prior to receiving what the whole darned world hopes is a life-saving bone marrow transplant, the gift of an anonymous lovely, adorable man in europe.  her mom updated this morning:

One week down in the BMT. Hannah's doing better thanks to Reglan/Benadryl & Zofran. She will get Cytoxan and ATG today. Please continue to pray she tolerates with no/minimal side effects. 

END OF UPDATE... thanks for tolerating my lazy blogging.

********************************************************************************

To begin with, and this is especially important for those of you visiting the blog for the first time, I found the doggone ankle brace.  Rather, Fred found it.  There are certain loads of laundry too heavy for me to transfer to the dryer, so he's frequently in receipt of the cryptic request, "Please transfer." Well, as he transferred one bedspread, guess what fell out, now not only a boon to a cracked ankle but also sweet smelling and spotless?  Yes, the thing that mashes all those plates, pins, and screws back into non-jostling positions.

The other thing a new visitor to the blog should know is that I (Retired Educator, aka profderien, alter ego of one Bianca Castafiore, the famed Milanese Nightingale -- oh just read "About this Blog" over in the right hand margin...).  Hellfire. Choo?  Train of thought?  Ah, yes.  I follow, at any given time, four pediatric cancer patients, patients that are in the beginnings, middlings, and endings of their journey's trek.  My means of following them is respectful and done primarily through a wonderful creation and organization called CaringBridge.org.  Support them if you can, and definitely check them out.  Remember that CaringBridge is there should your family ever suffer a medical crisis or catastrophe and need a means to communicate news to family and friends -- as well as to blog and vent, and cry and beg for prayers, and send complete strangers into whirling dervishes of ecstasy the day you are declared NED -- No Evidence of Disease.

But give it some thought.  For parents with kids given tough diagnoses, it's generally not a good sign for there to be extensive or regular blogging and journaling on CaringBridge.  Who'd have time, what with time proved so precious, and the days being near perfect now that the little ones are getting better?

All of which means that bad news is coming in, thus far, in twos.  I'm bewitched into the "it comes in threes" belief, and am waiting for the third bit of sadness.

In the middle of it all, great joy!  For Kate McRae, another completely clean MRI of both brain and spine.  "Miracle" is not much in my vocabulary -- you'll note it's even set aside here with the embracing arms of quotation marks.  This may be one, though.  There's no way this child should be alive, and as untouched by the ravages of the chemo and radiation as she is.  Oh, she was touched -- there are struggles, daily, and sadness at what she cannot do that she once could, but she's ALL there, is Miss Kate McRae.  She is every bit herself, and we're better as a species for it.

Kate McRae

Why don't the doctors listen to the mothers?  Or are there so many mothers tugging at the pediatric oncologist's hearts, telling them they "know" something is wrong, the cancer is back.  They "know" it but the protocol for the chemo, or the radiation, or the study, or the only schedule that insurance will pay for... is every 3 months, or sometimes even six.

Maranda has been struggling for so long now, her son Brayden cruelly afflicted with Metastatic Anaplastic Medulloblastoma.  He has relapsed several times.  And now has again.  I am trying to arrange a meeting with her, as we both live southwest of the Lone Alp, but perhaps this is not the best time to pop in for a coffee.  She has a toddler, is a single, unemployed mom.

Anyway, for you to stare at, enjoy, and contemplate as you meditate and pray for Brayden, here is a recent photo of the little guy.  I love his face.  It's grown up but it's tricky.  I bet he's a trickster... Peace on you, Brother Brayden, and on your mom Maranda, and on his favorite little person, his brother Mason.

Now, I do have a thing or two to say about Brayden and Maranda.  They treat Maranda, it sounds like to moi, somewhat badly as she struggles to get to the clinic as scheduled, without daycare for Mason, and having been pegged an overanxious mother.  She asked them repeatedly to move up the MRI and was pretty rudely brushed off, with suggestions for therapy for anxiety or some psycho-crapo get-her-off-my-back shit.  The day of the MRI, same day as Kate's, his oncologist was out of town.  After they got home, Brayden, who has trouble controlling his bowels, needed changing and Maranda set about doing that... and in the process, his leg bent the wrong way, and broke, badly.  So back they went to the hospital... and she exhausted, and he in pain, and she could not stop worrying about the MRI results, even with the drama of the broken leg.

So a nurse finally prints out the MRI report and hands it to her.

That's how she discovers Brayden has indeed relapsed, and that's how that nurse got herself a few precious minutes of not being stressed out by Brayden's Mom and her worry-wart ways.

Maranda is smart as a whip but waited for the oncologist's return, and her phone call.  Today.  Monday.

Brayden's cancer is back.Dr A called me this afternoon. I will be going over options with her tomorrow, she is even calling St Jude's and MD Anderson, please keep praying for God to heal Brayden. I don't want just a little longer here with Brayden. I want a lot longer and I know that's not promised to anyone but if you could all please pray for that I would really appreciate that.

Jeez life is painful sometimes. It is worth it though, I feel like my heart is broken. I will update tomorrow with whatever treatment is decided.

The other person who is in decline is no longer a child.  She had leukemia as a kid, and relapsed once.  Then, last year, first year of college, it came back.  She only qualified for a certain highly experimental protocol, and I think she knew from the beginning of this latest round in the fight, this last trek as a pilgrim, that this was going to be her death.  But it is coming now so fast and furious that my heart breaks at the thought that she might not be ready.  Which is pretty freaking presumptuous of me.

All I can do is show you the picture that made me fall in love with her, and tell you that Ashley is now suddenly on hospice care and in severe pain.  She is from a very religious and faith-driven family and community, and I hope that is a source of immense and unending comfort.  Throughout the past months, she's pitched a fit to be able to attend her Japanese classes, and has kept the state of her coiffure right where it should be -- at the forefront of everything.  She's a beautiful nymph. You'll see.  You'll fall in love, too.

Ashley Riemer, September 2012

I write tonight with the news of the biopsy results from last week. Ashley's cancer in her bone marrow is showing 70%. This is very high and alarming. Ashley is now receiving Hospice care for pain. 

Ashley Riemer, May 2013

Prayer of Pan Cogito – Traveller

Lord

Thank you for creating the world beautiful and of such variety

And also for allowing me in your inexhaustible goodness

To visit places which were not the scene of my daily torments

- for lying at night near a well in a square in Tarquinia while the swaying

bronze declared from the tower your wrath and forgiveness

and a little donkey on the island of Corcyra sang to mi from

its incredible bellowing lungs the landscape’s melancholy

and in the very ugly city of Manchester I came across

very good and sensible people

nature reiterated her wise tautologies the forest was

forest the sea was sea and rock was rock

stars orbited and things were as they should be – Jovis omnia plena

- forgive me thinking only of myself when the life of

others cruel and irreversible turned round me like the huge

astrological clock in the church at Beauvais

for being too cowardly and stupid because I did not understand

so many things

and also forgive me for not fighting for the happiness of

poor and vanquished nations and for seeing only moonrise and museums

- thank you for the works created to glorify you which

have shared with me part of there mystery so that in gross conceit

I concluded that Duccio Van Eyck Bellini painted for me too

and likewise the Acropolis which I had never fully understood

patiently revealed to me its mutilated flesh

- I pray that you do not forget to reward the white-haired old

man who brought me fruit from his garden in the bay of the island of Ithaca

and also the teacher Miss Hellen on the isle of Mull whose

hospitality was Greek or Christian and who ordered light

to be placed in the window facing Holy Iona so that human

lights might greet one another

and furthermore all those who had shown me the way and said

kato kyrie kato

and that you should have in your care the Mother from Spoleto

Spiridion from Paxos and the good student from Berlin who

got me out of a tight spot and later, when I unexpectedly

ran into him in Arizona, drove me to Grand Canyon which

is like a hundred thousand cathedrals standing on their heads

- grant O Lord that I may forget my foolish and very weary

persecutors when the sun sets into the vast uncharted

Ionian sea

that I may comprehend other men other tongues other suffering

and that I be not stubborn because my limitations are

without limits

and above all that I be humble, that is, one who sees

one who drinks at the spring

thank you O Lord for creating a world very beautiful and varied

and if this is Your temptation I am tempted for ever

and without forgiveness 

--Zbigniew Herbert

Daisy Merrick