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
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."
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