45. ‘Roid-Writing’ — Part One
It’s 3 AM – Saturday.
Okay, we’re going for a ride — metaphorically speaking, of course. I’ll be sitting my ass in my warm recliner and, if you join me, you’ll be banging around inside my head, which is full of untethered stuff and tumbling about at high speed — think clothes dryer gone amuck.
First, let me set the scene. It’s dark outside. Crystalized tree branches from a daylong frozen rain storm are being brought to sparkling life by the soft glow of a light outside my front door. The gentle tap of sleet hitting the bay windowpane is a clear reminder that no one should go anywhere on a night such as this. I haven’t a choice, but you still have time to reconsider joining me on our little mental jaunt.
Fair warning: I’ve had very little sleep over the past few days and I’m putting no thought into what this blog will be when it grows up. I’m going to do a brain dump and see what tumbles free. I make no promises about this writing exercise except this — given my current state of hyped-exhaustion I suspect blog 45 will be a hot mess. If you still want to come along, buckle up!
As many of you know, I’ve been having a lot of trouble with headaches and memory loss recently. One recent Saturday things got particularly bad, and I should have let Tim call hospice to help with some skull crushing pain I was having, but I didn’t. And yes, I’ve learned my lesson — it was a hard lesson — one that cut deep to the bone, which is where all of my problems begin and end.
I’ve accepted (reluctantly) that as things progress with this whole dying thing, I am going to have to relent one day and let someone make life and death decisions on my behalf. Take a minute and think about what that means — for me — and what that means for you should you find yourself in my shoes. I suspect you might balk at saying these words, “Sure, honey, you decide.”
Keep in mind, the ‘honey’ in this case has never — not once in 35 years of marriage — gone to his car to leave for work, or the market, or wherever — and remembered to take his wallet, or car keys, or cell phone. But when the time comes, I’ll be putting my life into his hands — God knows they won’t be holding his wallet, or car keys, or cell phone — because they’ll be holding my hands. I take pure comfort in that, I really do. I kid a lot about Tim, but there’s never been anyone who’s loved me more deeply than he — or from a place of more rock-solid certainty.
How fortunate am I?
Back to the question I posed a minute ago — or it might have been many minutes ago — they sure do tick by s.l.o.w.l.y. in the middle of the night, BUT back to the point of this ramble — if there is one — should you find yourself in my uncomfortable shoes, would you have concerns about giving up control of your life? And, should you happen to be a control freak, like I am in certain areas — in all areas — then I double-dare you to try these words on for size. “Sure, honey, you decide.”
It’s not easy. None of this is easy — but it is tolerable.
When I told Nurse M about the events of that weekend and the pressure and pain in my skull, she again suggested we add a steroid-filled-bottle to my already-full-medicine-cabinet. She’d explained a few days earlier that taking a low dose steroid could help with the noggin fluid, which could help with the headaches, which could help with the memory loss — but it could also have some side effects.
I’m on a lot of medications. All of them help with some cancer related condition. All of them can cause some other condition. So, all of them need to play nice together — that way the medications don’t aid and abet the slow murderer named Cancer. Therefore, before there’s a pharmaceutical addition or subtraction, there’s always a discussion about what can and should be done, and when it can and should be done.
Whenever I mention a symptom, Nurse M does a nod of understanding. She is, after all, a professional hospice nurse — AND I am a patient who is traveling a well-worn path — though she NEVER makes me feel that way. I always feel as though I am her only patient — and most certainly the only person in the room that matters. Nurse M is smoooooooth. She knows where I’m fitting in in relation to the stages of dying — but she keeps the death march of Sheryll O’Brien strictly to herself. She knows what I can and can’t handle — and what will keep me up at night — irrespective of the ‘Roid Runner’ in my head.
Beep-beep!
On my first meeting with hospice, I jumped from, “Hello, please have a seat,” to “when will I be climbing onto my deathbed and when will you pump me full of morphine and who’s going to take care of my needs — you know my personal care?” I’m very sure I shivered and teared at the words. Nurse M homed in and realized my fear about dying was second to the ordeal of having loved ones or strangers having to do the personal care.
Odd perhaps, but this is my death story —and those were/are my concerns.
AND
Hello! It’s called personal care because it’s supposed to be personal.
She reigned me in and kept me focused on things that needed to be done in the immediate and said we’d discuss the other things when the time came. Okay, but ALL THAT OTHER STUFF is still on the horizon and, in the dark of night when I’m not sleeping, I’m thinking about a whole lot of uncomfortable and sad things, and that is among them. Just sayin.
Anyway, when I mention a new or persistent physical thing: a new pain or ache, a new eye and lip twitch, or new area of swelling, she grabs her iPad, scrolls through my chart reading this and that, and when she stops her search, I assume it’s at my lengthy list of medications — which I’m pretty sure she knows by heart, but wants to confirm for her own comfort. There’s usually a bit of scrolling up and down through my chart, and I can almost see the wheels turning in her head — good thing because I can’t read her face as it is always behind a mask.
Hmm. I’ve never seen her face. Probably some plot by the Grim Reaper.
Anyway, after that weekend the suggestion we add the steroid became a plan that she’d call Dr. Wonderful. A few days ago I began taking Dexamethasone. A few days ago I began having relief and side effects.
On the day I took the first pill, I developed cold-like symptoms. My nose opened like a faucet, my throat became scratchy and sore, my right ear started to hurt a bit, and I felt like crap — the good kind of crap — not the kind of crap I’ve been feeling because of the cancer shit fest.
By late afternoon, after I’d used a half box of tissues and asked Tim to take my temp a handful of times, he was doing the whole, “We should call hospice,” song and dance.
I said, “Okay.” See, I learned my lesson.
By early evening the after-hours call to hospice was made, Tim gave the skivvy about my faucet-face, got the medical-scoop from another lovely nurse (must be a prerequisite for the job), and handed me a fuzzy-tipped-stick that I stuck up and swirled around the insides of both nostrils. I handed it to Jessica, who’d been called to the scene of spontaneous-parental-bickering when Tim dropped something from the test kit. She patted his hand, “Don’t worry,” gathered the pieces, walked away from the two of us, stood at the counter silently opening foil packs and plastic test tubes and calmly stuck the snotty test strip into a fluid-filled holder. She set the timer and pronounced, “Ten minutes.” Her father and mother stared at her. “Still gonna take ten minutes.”
Jessica is carrying a great deal of anxiety over this situation, though she is no longer asking questions about when — probably because she sits in on all of my hospice checkups and when the pronouncement from Nurse M comes that I am stable, my beautiful girl smiles wide, bids farewell to my nurse, then touches my hand as she heads upstairs to do yoga or lose herself in a book. Her new ways of destressing.
Sure wish she was reading one of my books, but they cut too close to her bones now, too.
Anyway, back to the story. Within ten minutes we knew I didn’t have Covid (big-ass sigh of relief), but we still concerned ourselves that I might have gotten a head cold. Let’s face it, at this stage of the game of Life, I don’t want to get anything!
Tim offered me something to eat, and though I was hungry, I couldn’t really eat anything because my throat really hurt — “DRATZ!”
We’re going on a sidestep. When I was diagnosed, and my world was upturned, the standard rules and regulations of Dr. Wonderful changed — or eased a bit. At least they did on my end. For a couple of years I’d been monitoring my blood sugar and had changed my diet because I caught diabetes.
I didn’t catch diabetes — I lived a lifestyle that primed me for the disease.
In any event, I became a statistic and I began — in earnest — watching what I ate and did the whole finger-testing twice a day. I typed the foods I consumed into some online app-thingy (see Guru, I can talk the talk) that calculated where I was on fats, carbs — good and bad — and proteins. Overall, I did really well and didn’t really find the ‘diet’ restrictive — except for my having to cut W.A.Y. B.A.C.K. on my favorite food – LASAGNA.
Another side step. Throughout the Pulling Threads series, several characters serve lasagna, or order lasagna, or brag about their culinary skills in making lasagna. They do that because I MAKE THE BEST LASAGNA IN THE WORLD. I shit you not! My personal schtick is this — “People who don’t like me invite me to events if I promise to bring my lasagna.”
One of my characters, Shelby Webber, uses that line in one of my books. Couldn’t even begin to tell you which book, but it’s in the Pulling Threads series.
As for my lasagna. There are two secret ingredients.
And I’m not telling!
Although I did tell Denise Sneade and she NEVER asks me for cooking advice!
Anyway, back to the blog ……. scrolling up ……. okay, I’m back. Steroids. We were talking about my newest little friend — the one I think might have opened the faucet in my head and let my brain drain out my nose — gross, sorry. Basically, I was feeling like I had a head cold, AND I was feeling way less fluid pressure in my head, AND I was clearer in my thoughts.
But, I was hyped as hell. Another little side effect.
Tim offered me a cup of tea. Wait for it — wait for it — and I accepted! He tucked me in with a kiss to the top of my head and placed his left hand onto my cheek — our new goodnight ritual — and then he went upstairs to sleep. I stayed on my heated leather recliner and went to Bug-Eyed-Insomnia-Ville — a lonely little place where sleep evades, and feet start pumping air at rapid rates, and fingers start tapping chair arms at even more rapid rates, and the change of minutes on cable boxes S.L.O.W. S. W.A.Y. D.O.W.N.
That first night, I was awake until 2 AM. I grabbed hold of my next scheduled Tramadol, swallowed the thing without water, and started a chant, “Come on. Come on. Come on. Do your thing. Okay, I know you’re for pain, but right now I’m feeling the pain of being awake — and when I’m awake, I’m thinking — and believe you me that is fucking painful! Come on. Come on. Come on.”
I fell asleep.
Tim woke me when Hadley arrived for breakfast — a non-negotiable four-and-a-half hours of sleep later.
That was then, we’re back to now. I’m reclining. You’re tumbling in my messed up head. Tiny ice pellets are gently tapping at the windowpane, and I honestly don’t know what I’m writing about ……. scroll to the top.
Are you effing kidding me right now?
I’m still writing about steroids?
Okay. New Plan.
This entry just became Part One.
I’m going to try to close my eyes for a few, or maybe try to get lost in a Reba rerun on Hallmark — either way, I’ll meet you back here after I spend some time with Mr. Chase, Mr. Sanborn, and Mr. Wonderful — whenever the hell the latter of the three drags his ass from bed and brings me coffee. I know I shouldn’t drink it, but you can bet your ass I will drink it.