Lucky

A totally not surprising, in any fucking way, headline:

UnitedHealth reduced hospitalizations for nursing home seniors. Now it faces wrongful death claims

Yes, this is the same UnitedHealthcare which denies 33% of all medical claims. This is the same insurance conglomerate whose monstrously overpaid CEO was under investigation by the DOJ for insider trading when he was shot on a Manhattan street.

UnitedHealthcare has expanded into the nursing home biz. Through their Optum division, nurse practitioners and physician assistants are theoretically deployed when there’s a patient need, a problem, during Monday though Friday, 9-5 hours. Weekends, at night or in the early morning? Just do your very best to avoid having any unfortunate health issues in those off hours and days…k? I mean, you can probably connect to an Optum employee on their “hotline.” Who knows where the call centers are and how long the hold times are though.

Those death claims?

Three nursing home residents died because employees of the American healthcare giant UnitedHealth Group helped delay or deny them critical hospital care, two pending lawsuits and a complaint to state authorities have alleged.

In Georgia, the family of a woman named Cindy Deal filed a lawsuit alleging that the 58-year-old died because Optum and her nursing home failed to hospitalize her for hours after she started foaming at the mouth and appeared to be having a seizure.

In Ohio, the family of a retiree named Mary Grant filed a lawsuit claiming that the 70-year-old died after Optum and Grant’s nursing home failed to send her to the hospital, though she had suffered a traumatic head injury and began vomiting.

In New York, a physician’s assistant named Christopher Bieniek alleged in a complaint to state authorities that a 63-year-old nursing home resident died due to “gross negligence” by an Optum employee. The employee refused to hospitalize the man, despite his kidney failure, according to text messages Bieniek says he shared with state investigators. (source) 

I only mention it but this is wicked personal for yurs disabled truly. Remember my surgery-a-thon years? I had five – count 'em, FIVE big fat neurosurgeries in the space of three years. After one surgery I went from hospital to inpatient rehab and then they had me go to a nursing home for further rehab. Though I’d chosen a well reviewed joint, the place was a complete horror show. From non-functioning call buttons (or aides who simply chose not to respond), beds that couldn’t be adjusted, ignored menus (they brought the food they wanted to bring regardless of what I noted on my menu – forget about me being vegetarian and lactose intolerant) and god forbid anyone remember that I’m deaf and, at the time, in a wheelchair, unable to walk to the can on my own.

The place seemed so utterly incompetent and uncaring that I was sure I wasn’t getting all my meds and, boyhowdy, I take a shitload of ‘em. They include anti-seizure pills. Without these, if I’m ignored, I’m toast. I texted Ten and Jen after a few days and told them I needed to come home. I was afraid that, if I stayed in that house of horrors, I would probably die (and they probably wouldn't notice for at least 24 hours).

I’m very lucky to have Ten, Jen, and Oni at home. VERY lucky. I found out a few months after I got home that a friend of mine had died at this same nursing home. Maybe she would have anyway – her NF2 was far more advanced than mine. I’ll never know.

Under Medicare Advantage, the government pays insurers like UnitedHealthcare a set amount of money based on the expected healthcare needs of each senior enrolled in their insurance plans for long-term nursing home residents. The less insurers spend on residents’ care, the more they have left over in taxpayer funds for potential profit.
~~~
Two of the whistleblowers, both former Optum nurse practitioners, filed declarations with Congress, alleging that company managers improperly pressured them to reduce hospital transfers for nursing home seniors, and to get residents onto medical directives, such as “Do-Not-Resuscitate” orders, that could pre-empt costly emergency room care. The declarations also allege that supervisors pushed them to creatively code patient diagnoses to increase federal payments for the company.

What do these rich, healthy fat cats care if we die? We’re just a drag on the system, right? Forget the fact that our tax buckos have been paying into the system for billions of fucking years now.

So far, I've been lucky. Not everyone is.

ET

Earlier this week I had a Zoom appointment with my neurologist – the one who deals with my stupid, nasty-ass movement disorder, essential tremor. It's also known as ET – not to be confused with E.T. the movie, though I often do feel like an alien or a stranger in a strange land…which, at 65 years of age, was NOT the mind expanding read it was at 14 but I digress. 

I told the ever so aptly named Dr. Goodheart that, since our last meeting, my shaking has gotten worse, despite an increase in meds. Yes, mondo sighs all around. The shaking is primarily in my head and hands (worse in my head). This means that handwriting, painting, and other fine motor coordination shit is challenging at best. Sometimes my head shakes so much that I can’t read. It’s hard to focus and this effects my already supremely wonky balance. Obviously, I no longer drive. 

There are workarounds but they only get me so far. What to do?

Goodheart is upping one of my meds but there’s a big risk of less than groovy side effects, such as cognitive slowdown – NOT acceptable! So, we’re going to do a short trial and see how that plays out.

She suggested other options if the med increase doesn't work. One is nerve-blocking injections of onabotulinumtoxinA, also known as Botox. IF I end up going this route, I’d get two to six shots in the neck *shudder* every six weeks. Naturally, my big question is, will I end up with Mar-a-Lago face? That would be wholly unacceptable.

Another avenue, which I may not qualify for, is turning me into an android. Holes would be drilled into my head and electrodes implanted deep inside my brain (WHILE I’M AWAKE!). The electrodes would connect to a a box inserted near my collarbone. This set up called deep brain stimulation (DBS).

There are billions of neurons in each human brain, and these cells communicate with each other using electrical and chemical signals. Several brain conditions can make neurons in different parts of your brain less active. When that happens, those parts of your brain don’t work as well….

DBS uses an artificial electrical current to make those neurons more active, which can help with the symptoms of several different brain conditions. However, researchers still don’t know exactly how or why this works. (source) 

So the DBS current will interrupt or fill in for my brain’s abby-normal signals that make me shake, rattle, and roll (or something). This would be great. I’d love to be able to read, watch teevee, and have a convo without having to hold my head in my hands to keep it still.

That the researchers don’t know how or why it works definitely gives me big heebie jeebies though. Also, that being awake while they drill the holes and stick in the wires? That kinda freaks me out. 

I’m a tough old babe, veteran of eight brain surgeries, but this seems a tad creepy. I mean, do I really have to be awake for it?

There’s a fair chance I’m not a candidate for this anyway. I might have put on too many surgery miles at this point. My treads might be getting a bit too thin up there, ya know?

Can’t the docs just go all Old Man’s War on me and transfer my consciousness into the body of a healthy, ultra strong, computer brained 22 year old?

I REALLY don’t think this is too much to ask.

SHE IS ALIVE!

Had my two big back to back doc appointments this week and the good news is that I’m getting old. That is, of course, also the not so awesome news. I’m now increasingly suffering the slings and arrows of maybe not so outrageous decrepitude. More or less. Kinda, sorta. All things considered and shit.

That swelling in my ankle? It’s something about my veins. Or Venus or Venus de Milo or some such. Dunno, I was kind of distracted by my new PCP’s flagrant youth and his astounding resemblance to a younger, dewy version of Matthew McConaughey (who is, by the by, 55 years old now – sheesh!).

Anyway, ankle diagnosis – something, something, something, venous insufficiency, neurogenic dependent edema and sensory loss secondary to peripheral neuropathy or autonomic dysfunction associated with NF2, or secondary lymphedema. Nothing to write home about. 

So, I’m getting compression socks (joy – those things are SO fucking homely!), changing up and expanding my workout routine, going up a half size on my damn sneaks and otherwise keeping an eye on things. I’m in no pain and my strength is unaffected – I’m good to go.

Jen and I came up with a great idea to make my walks a little easier. Our driveway and the sidewalk leading down to the seawall are tremendously uneven. They’re broken up by the tree roots who’ve triumphantly broken free of the cement and asphalt. While I totally applaud the trees’ persistence and success over man, the fucked up path is a wicked fall risk for yours balance-impaired truly. 

The solution? A human sized hamster ball that’s also a hovercraft. My running, within the ball, would generate electricity to power fans which would create a cushion of air between the ball and uneven ground. Once I reach the smooth surface of the seawall path, I could retract the fans and just walk (still within my hamster ball). This would also eliminate the problem of being in the same airspace as potential COVID and other assorted disease carriers.

Fab notion, eh?! (NB: Hamster balls are NOT a good idea for hamsters!)

When I met with Plotkin, we briefly talked about Michie, who had once been a patient of his (she switched to another neurologist in the same department at some point). She came up in part because I wanted to let him know that she’s gone but also because he always asks about my moods – my emotional health. This is an important aspect of managing a nasty-ass disease like NF2. If I’m sad, angry or otherwise in my feels all the time, I’m not doing all the things to make life with this curse happy, easier or, at least, less stupid, painful, and debilitating.

Naturally, Doc P couldn’t say much about Michie but he did tell me that my case, my curse, is not at the same level as hers was. I’m relieved AND I feel guilty about that relief. Of course I do, I was raised Catholic. I feel guilt about just about everything whether it makes any damn sense or not – usually it doesn’t.

Godzilla? Grim Reaper?
…close enough.

He also said that it’s normal to fear you’re next when another NF2 sufferer, a friend croaks. This, with Michie, is the first time I’ve honestly had the look-over-my-shoulder-to-see-if-the-Reaper-was-behind-me vibe. 

Anyway, Plotkin gave me a clean (for me) bill of health, has me down for another zillion MRIs (six months from now though), and talked with me about a test run for some new closed captioning eyeglasses. Something like this, I believe. He’s signing me up!

And once again, I’ve got Dylan playing on the old internal turntable. This morning’s selection is, unsurprisingly, It’s Alright, Ma (I’m Only Bleeding), specifically the line:

…he not busy being born is busy dying 

‘scuse me now – I gotta get busy being born...get busy staying in the process of being born? EWWWWWWW, sounds messy!

Don't Panic

Chris Riddell

I’m meeting my new PCP today at 2:30. The primary purpose of the appointment is the persistent off and on (mostly on) swelling and interior numbness in my left ankle, calf, and foot that I’ve been whining about over the past four months.

I’m scared. I’m afraid the new doc’s going to be useless – that is, I'm afraid he won't take this seriously. He'll just hand me a lollipop and tell me to call back in a month is it hasn’t improved. IT’S BEEN FOUR MONTHS ALREADY! I’ve tried giving the old limb a rest in case I just overdid the exercise. I had MRIs to see if there was some fresh or resurgent tumor action going on. My leg strength is fine but that damn ankle keeps blowing up like it wants to be in the Macy’s Thanksgiving Day parade.

I’m reminding myself here DO NOT PANIC IN ADVANCE. I’m doing myself absolutely ZERO good by anticipating the worst possible outcome. New Guy MAY be perfectly fine. He might be competent, thorough, and a fabulous diagnostician.

An aside: My grandfather, who was a general practitioner in a small town in upstate New York, was known throughout the county as a brill diagnostician.

Okay, I should be not be panicking at all. Panic does not move the ball downfield. Panic does not help me accomplish my goals. My objective, my aim in this case? To find out what the fuck’s up with this swollen ankle action and cure that shit RIGHT THE FUCK NOW. I’m really sick of it getting in the way of my strength and balance rehab exercising routines. How the fuck am I ever gonna reach my goal of rollator-free walking if my left ankle inflates like Donnie Demento’s //shudder// every damn time I do even the slightest amount of cardio? Honestly!

Before I go into see New Guy this afternoon, I need to make an outline of sorts. 

• What’s the main problem – list background information. E.g, NF2. etc. 
• What have I done so far to investigate possible causes. (brain and spine MRIs, new shoes, changing up my exercising routine, etc.)
• How is this effecting my day to day functioning?  (ya know, I never thought I’d ever complain about NOT being able to exercise. I HATE exercise. More than that, I hate not having a choice in whether I can or not.) 
• What do I ultimately want? To find out the root cause and get this fixed.

There – just thinking through this helps to lower the freakout quotient.

A lot of how well this appointment goes depends on whether New Guy has a gigantic ego or not. Also, I need to get past my age bias. From the pics I’ve seen of him on line, he looks younger than Doogie Howser. Given my nonstandard, complicated medical health, his lack of experience is not a big selling point.

I’ve, presumptuously (?), ruled out the neuro issues so all he’s really go to do is order up X-rays or a CAT scan, right? Regarding the NF2 shit – that’s actually a big maybe. I see Doc Plotkin tomorrow. Perhaps, despite the absence of fresh tumor growth, other neuro fuckery is going on. //sigh// 

I really HATE having a byzantine disease. Couldn’t I have something straightforward like that thing you get from typing on the computer too much or the one where you can’t eat food made with wheat or something? Yeah, that'd be much better.

Hysteria is impossible without an audience. Panicking by yourself is the same as laughing alone in an empty room. You feel really silly.
~ Chuck Palahniuk, Invisible Monsters 

Crap

Next week I’m meeting my new primary care physician (previous one retired early and I’m NOT unhappy about that). I’m at a general practice that’s connected to MGH – new guy’s her replacement. He’s young and a DO versus an MD. He’s an osteopath. ‘the fuck is an osteopath? 

“Osteopathic medicine is a distinctive branch of medical practice in the U.S. that emphasizes a “whole-person” approach to diagnosis, treatment and patient care.” 
~~~
One unique aspect of DO education, and the main difference from an MD education, is additional training in osteopathic manipulative treatment (OMT), which is the therapeutic application of manual techniques (such as stretching, gentle pressure and resistance) to diagnose, treat and prevent illness or injury. (source) 

Whoa, this is giving off some crystals, burning sage, ivermectin, testicle tanning vibes. WTF! If he mentions Reiki or wellness farms, I’m outta there.

My reason for going in is the off and on interior numbness in my left calf and foot and swelling in my left ankle. This, if you recall, is the leg that, in a post brain surgery snit, quit communicating with my brain (or vice versa). My recent brain and spine MRIs showed no growth of my extant crew of bastard meningiomas and no new mobility threatening motherfuckers (I’ll talk about this more with Doc Plotkin next week to see if there's any other fuckery afoot). So, I’m looking into other possible causes. 

Maybe a gang of semi rabid squirrels have taken up residence in my leg. I’m not a tiny woman – falling somewhere between snack-size and family bulk pack – but a small fam of Bornean Pygmy Squirrels might fit in comfortably.

So, it’s time to consult the brandy new general practice doc who, I’ve just noticed, specializes in geriatrics. How convenient – I seem to fit into that category. Maybe it’s just me but I find it interesting that a young guy is specializing in old people healthcare. What’s the draw? Yeah sure, if he’s lucky one day he’ll be old too but how can he otherwise possibly relate? Has new guy known a shitload of oldsters, a hugely varied lot of us geezers, AND he rocks some superhero level empathy? 

Is this anything like why a male doctor would become an obstetrician and/or gynecologist? Is it pure scientific interest? Compassion? A dedication to the, generally, more vulnerable?

Frankly, if new guy has decent levels of curiosity, a willingness to learn (given the relative rareness of neurofibromatosis type 2 and the doc’s youth, I’m betting he’s not too familiar with my pet disease), isn’t full of himself, and doesn’t try to balance my chakras or cure my lovely NF2 with feng shui, purple microdot, a raw food diet, having my cards read, and praying to white Jesus, I’ll be willing to give him a chance. (NB: I probably wouldn't turn down the microdot despite its dubious curative abilities)

What I expect is for him to order up an X-ray or a CAT scan or do whatever test is needed in order to figure out what the fuck’s causing the swelling in my ankle. I’m not in pain or having any extra weakness. It’s not brain surgery and I’ve already got a couple dudes for that anyway.

This, on top of my ongoing dental issues, is just annoying as all hell. Is it not enough already that this stupid body is riddled with stupid tumors? I mean, why do I have to put up with other pesky shit on top of that?! Is this fair? NO, it is not! Dammit.

I’m an older woman in crap health and I’m really pissed off. Obvs.

Tube Time Fun

I had another MRI yesterday. Whoopee! This one was for my spine. We’re still trying to find the root cause of the, now only occasional, interior numbness and swelling within my left foot, ankle, and calf. YES, it could totally be related to the vibrant tumor farm along my neuro system. Ya know, this being due to my fun, FUN, and relatively rare disease, neurofibromatosis type 2. Act now kids and NO you more than likely won’t get a case of your very own. NF2 only favors one lucky individual out of a sea of 40,000 people. Yeah, I'm BIG special.

July’s brain scan established that my up top tumors, particularly those camping out on me old motor cortex, are chilled out and not involved in my calf/ankle/foot antics. YEA! Hopefully, the xenomorph wrapped around my thoracic spine hasn’t gained any mass and is still sleeping. The MRI tech’s report drops in two days so, of bloody course, I’ll read it ahead of my October 9th follow up meeting with the good Doc Plotkin. I like to be prepared, have an inkling of what I can mebbe expect.

Considering the ankle swelling happens only occasionally now AND I’ve been able to work back up to doing 25 minutes at a time on my recumbent elliptical, I’m absolutely ready to class this calf/ankle/foot hullabaloo as just one of those funky-ass consequences of getting older. e.g., I rolled over in bed funny and strained my ankle (or I could have inadvertently stepped on a dove?). Then I walked on it too much and made it worse.

Welcome to life after 65 where just taking a breath in an out of the ordinary manner can put you in a neck brace for a month. Not that I’ve done this…yet.

I don’t know if this, sleeping on my ankle/foot funny, is the case here. The root cause may still be in this ratbastard disease that I’m rocking. Maybe it’s a combo of aging and NF2. With Michie’s death still fresh in my heart (and not knowing the specific cause or the path she rode during her last few month) I wonder. A LOT.

The other worrisome bit – the techs told me I’d be in the tube for 40-45 minutes. It was an hour and 40 minutes! What the schwannomatic fuck? I mean, I know that my thoracic monster is, well, monstrous, but…sheesh. This is disturbing and I seriously deserved a cookie after that scan.

I did manage, this time around, to get my MRI calm-me-down meds right. You may recall the last time when I maybe shouldn’t have mixed so many gummies with my lorazepam? Yeah, I went on THE most mind-bending psychedelic journey whilst tube riding. Oopsie! 

Nothing like being a disabled woman in her late 60s, coming out of an hour long MRI scan, announcing “I’m trippin’ my balls off here. I don’t actually have balls but I guess you know that. I gotta pee now.” I *think* I just said that to Jen but, ya know, the techs may’ve overheard.

In general, I was much more dignified yesterday. Possibly. This is good...I guess.

The Pit Crew

Why do I get to survive and, relatively speaking – within this crazy-ass incurable NF2 world – thrive, while bright spots of sunshine and goodness like Michie O’Day and Felicity Lingle die?

As you may have noticed, I’ve fallen into the Survivor Guilt portion of our program.

I’m sure I’ve said this before and this is the absolute truth of it all – if not for Ten, Jen, and Oni, I’d be dead or in some crap nursing home and, most assuredly, would have been before the end of 2021.

Real life, in case you missed the newsflash, isn’t like the movies. You know, where John Wick takes blow after blow, gets shot, falls down zillions of flights of stairs, gets up and fights back or escapes on fleet feet. I don't have a John Wickian constitution – total bummer. I KNOW.

I know that, at my current health level, I could take care of myself if I had to but it would be a LOT of work and I’d need to move to an assisted living type apartment. Those are pricey as fuck though. Maybe just a regular apartment would be fine but I’d need one within a block or two of the T (the train/trolley line). I can’t drive anymore so I’d be on public transportation for all my doc appointments.

Whether on my own or in assisted living life would be a LOT more expensive, a ton of effort, and really lonely without Jen, Ten, and Oni.

Now I can focus on blogging, exercising (and feeling guilty about not working out enough), staying on top of my symptoms and in contact with my docs, making some art, reading, and, of peak importance, Cake appreciation time. Oh yeah, there’s also all that important time that I spend staring off into space pondering such world shaking concepts like:

• Do salmon dream?
• How long would it take for an abandoned golf course to revert to a natural state? How long before it turns into a field filled with wildflowers, bees, and bunnies?
• Are Republicans at all capable of self-awareness?
• Do orcas laugh? Do they bust a gut when they sink those yachts?

Our good boy Cake earns his keep by catching mice and looking tremendously handsome. Me? I’m more or less ornamental. Luckily, at this point, I’m still self-cleaning. No need to dust.

IF I was on my own, I’d have to spend most, if not all, of my time doing basic upkeep shit. What would take a healthy person no real time at all, might take me a day and I’d need serious naps afterward too. Laundry? Dishes? Scrubbing the loo? Vacuuming? Dusting? We can completely forget about cleaning the baseboards, high dusting, and windows. My balance is just not up to the task.  

Mind you, this might well eliminate the need for all those pesky PT exercises. I mean, wouldn’t performing all these chores amount to the same thing? I’d just need to add in some cardio and *BAM* I’m good. 

Okay, so there’s an upside. Nah, I WAY prefer having my family here. Cake may earn his board by slaying mousies and I don’t BUT at least Ten doesn’t have to clean a second, larger litter box.

Huh? Eh?! That’s something…RIGHT!?

Michie O’Day

I signed on to Facebook last night and got some tremendously unhappy news. My friend Michie O’Day has died. She took the last train to the coast on September first.

I suppose this didn’t come as too much of an enormous shock. I hadn’t seen any posts from her since July and, in general, her posts had been pretty sparse over the past few months. I suspected something was up. Still, reading the news was startling and I'm, of fucking course, wicked sad.

Michie and I had an enormous amount in common. We were both painters (Her, traditional landscape. Me, figurative along a German/Austrian expressionist line). We were both wild about recumbent triking. We loved to travel and solo travel was definitely a thing. We were around the same age – just one year apart. 

Into the Wild, Michie O'Day

We both have/had neurofibromatosis type 2 and our manifestations of this rat bastard disease were remarkably similar. In fact, our symptoms, experiences, and surgical histories were more alike than they were with our respective NF2er family members.

In the face of adversity (and Michie and I had/have plenty of that), we were/are obstinately upbeat. Well, she was bright, sunny, and determined to persevere. Me? I’d get pissed – you know, “NO fuckin’ disease is gonna take ME down. FUCK THIS SHIT! I will SO walk again!” Etc. etc. ad nauseam. Point is, we were both persistent bitches.

I think she stopped triking before me. Though her legs still worked, her balance had degraded too much to manage getting up and down from the recumbent trike. Solo triking would have been daunting if not full on impossible.

Why did I stop? The Amazing Bob had just died and I knew that I was too down and distracted to pay proper attention to the road and traffic. I didn’t trust my deaf self OR the careless drivers in their giant SUVs.

I believe Michie and I lost the ability to paint (as we once had anyway) at around the same time. For me, it was primarily due to my essential tremors – I just shake, rattle, and roll too damn much. For her, I believe it was her failing eyesight and the muscle weakness in her hands. She could no longer wield a paintbrush.

Michie at the Portland Museum of Art

Michie was a huge inspiration to me. She was deaf, losing her sight in one eye, and in a wheelchair but was able to thrive while living alone. WOW! I don’t know the specifics of her home arrangements but I know she had a caregiver coming in (medical check-ins? physical therapy? dunno), as well as a house cleaner, and grocery delivery. She had an active social life with dinner parties and days out at museums and restaurants.

She also contributed to this here blog, Tell Me A Story.

In May of 2022 she wrote Living With NF2 where she spoke of our special talent for growing benign tumors in our brain and spinal cord. 

Rather than talk about the surgeries, treatments and medical consequences, I want to share some of what I’ve learned over the past 39 years since diagnosis

Michie and I were/are especially talented tumor growers. Until September first we were both quite good at survival too.

In 2015 she wrote of a solo trip (while deaf and in a wheelchair – Jesus, overachiever much?) that she took to a rocky island off the coast of Newfoundland. While there she painted, did chair yoga, drank gin and tonics, and stared out to sea. I'm just surprised she didn't solve some international crisis while there too. You know, all while sipping her gin and putting the final touch on her latest seascape.

In 2016 she wrote about her beloved hearing service dog, Doc. That year, she also wrote about transitioning to a wheelchair and, generally, needing more daily help.

Michie O’Day was a hero.

I Need More Cookies

I finally heard back from my neurologist re: my brain MRI. You know, this was the MRI that got bumped up from late September because of my not so new anymore, potentially tumor related symptoms.

My team doesn’t feel the calf/ankle/foot interior numbness and occasional swelling issues are related to the meningiomas squatting on my motherfucking motor cortex. (an aside: I have a whole team! GodDAMN, I feel special or really diseased or something.) Now, I’d read the MRI tech’s report as soon as it was posted (a couple weeks ago) and saw that my tumor farm hadn’t grown in the past few months so I figured I was probably safe. That is, I was safe from having to undergo immediate surgery. 

I totally realized that there are other factors to consider – there’s shit and intricacies that I don’t know about because I’m not some big, amazing neurologist specializing in neurofibromatosis type 2. Having said that, I know enough to be able to get a general sense of how I’m doing by reading my reports – after all, I’ve been studying these suckers for nearly 44 years. First with Dr. Ojemann and now with Doc Plotkin. So, I haven’t been sitting and squirming on pins and needles for the past two weeks, waiting for them to get back to me.

What I didn’t expect is that Plotkin would now want me to have the mondo mass on my thoracic spine MRIed. //sigh// Since he hadn’t specified having that done before (and I thought I’d brought it up but maybe not) I assumed he ruled that baby out. Nope. //sospiro profondo//

I only mention it but, since 2021, I’ve had surgery to reduce the size of that motherfucking mass (which is all Coumans can do – the damn thing is too big and wrapped into too many tight, scary spaces). I’ve had proton radiation to stop its growth and I’m on chemo meds to further inhibit growth. Mind you, this is on top of all my other surgeries and procedures. Yeah, it’s just nonstop buckets of fun here in Donna Land. 

For the upcoming spine MRI, I’m gonna make sure I don’t trip. (in the White Rabbit sense of tripping, that is) Yeah, no gummies for me this time. Granted, that last ride was entertaining as all hell, if wholly unexpected. I’d just rather be chilled out though. Maybe take a wee nap.

What I REALLY want is for my docs to rule out all seious causes and just say, "you probably just slept on your ankle funny. Eat a cookie and watch a couple more episodes of South Park and you'll feel better."

Yup, that's gonna happen. Suuuuure! 

Touchdown Brings Me 'Round Again

Do not, and I really gotta stress this, DO NOT attempt to prep/chill/peace out for your 2 PM Sunday MRI ahead of time by taking half a calm-me-down pill at 9:30 AM, chased with a weed gummy (pineapple habanero, thenkyouveddymuch) and then another what-the-hell-let’s-be-sure-I’m-REALLY-chill-in-the-machine gummy as our hero, Jen, is driving us in to MRIville at 11:30.

Why not? Shit kicks in slow…like the tide. The tide totally sneaks up on you. It's not there and then... *WHAM*

I was feeling alright, relaxed, until I was conveyor belted into the machine. I had a black sleep mask over my eyes and my hearing aid was out (which only picks up louder, concussive sounds anyway – no language, music, tone or sound direction). My head was bolstered into its cage – I  couldn’t move. This was sensory deprivation city.

And then my mind exploded. No, not in a blood and guts kind of a way – nope. This was a late ’60s/early ‘70s sound and vision, inspired by Owsley Stanley Purple Haze, kind of explosion. Oh yeah babies, I was eight miles high and not touching down anytime soon.

The inside of my head was like one of those iMax theaters and I was sitting front row/center. I was watching my smoking skull (someone else’s smoking skull?) rise high and fast into a dark, star spotted night. I was zooming over the surface of the ocean, greeting orcas and other whales. I visited octopuses – I think they were having tea.

Yep, I was quite unexpectedly tripping my fat ta-tas off. 

Once I realized what was happening, I just tried to go with it, enjoy the ride. It was certainly a distraction from being stuck in the small, tight place, unable to move.

Still, HOW could this have been possible? Maybe the very small amount of pharmaceutical calm-me-down med ignited those two weed gummies into a medicinal kaleidoscope joyride? Could I, in my pre-MRI claustrophobia nervousness, accidentally dropped an additional calm-me-down or a third gummy?

I don’t remember doing so but it’s possible.

When the techs pulled me out of the machine I was still pretty disoriented but I could, with my rollator and Jen’s assistance, walk. I told her that “I’m trippin’ my balls off here. I don’t actually have balls but I guess you know that. I gotta pee now.”

Yep, I guess I’m a talky little day tripper. 

She took me to the large disabled persons loo where I’d have more room to spaz around while I changed out of my ever so stylish johnny pants and gown. Jesus, Jen’s a saint.

Amazingly, I succeeded in getting back into my shorts and T (with Saint Jen’s help, of course) AND was able to walk to the car (using the rollator) all by myself (well, Jen spotted me but there was no need for the wheelchair). The entire time though, I was waffling between “I think I’m just pleasantly high now” and “nope, I am definitely still tripping with the roadies.” It seemed to change by the moment.

Once in the car, it hit me like a ton of bricks. I turned to Jen and announced, “I have the munchies – BAD!” Luckily, Jen had a bag of small dark chocolate dipped pretzels RIGHT THERE, opened and at the ready.

Have I mentioned Jen’s obvious celestial beinghoodedness yet? Yes, I think I might have. It’s quite true, you know. With the biggest smile pasted on my gob, I ate all her pretzels while grinning like a madwoman and cloud-watching on the way home.

Then, on getting to Valhalla, Ten and Jen helped me up the stairs and into my comfy chair where I had some veggie chips and continued to enjoy being high and done with my MRI.

When do I get the results? When do I find out whether the slight swelling and interior sense of numbness in my left calf, ankle and foot is due to a growth spurt in the tumors over my motor cortex OR is caused by something else entirely?

Dunno. I’ll drop Doc Plotkin and his nurse practitioner a note this morning. Good news – I would really like some good news today. Thank you!

Emmmm, in conclusion, don’t trip during your MRIs. Being chilled out is cool – unexpectedly having front row seats to a show of my smoking skull rising into the stratosphere on its way to Europa or some nice bodega on Proxima Centauri b is, well, fascinating if a tad unnerving

Tense and Nervous

 Well, it’s been a week since I saw my neurologists’s nurse practitioner and told her of my fun new potential brain tumor growth symptoms. I was to check in at this point (I did so late yesterday afternoon), to tell them if the swelling and quasi-numb interior feeling is still present.

It is. 

Ten took me out for a brief (quarter mile) seawall walk yesterday. Now then, I don’t walk as much as I should – most of my cardio comes from recumbent elliptical action – so maybe it shouldn’t come as a surprise that I experienced some weakness on top of everything else. I don’t get a lot of practice walking this big old bod around.
 
What’d I do after we got home though? 15 minutes on the elliptical because I just HAD to see if I could do it. 

I could but then my ankle and foot puffed up as though my blood had been replaced by oobleck. NOT as much fun as it may sound.

I just heard back from Brain Biz Central and my MRI is being moved up. This is good but also scary. What if the rat fucking meningioma bastard that's squatting over my motor cortex is growing – getting fat and happy on my dime? Will I still be a candidate for proton radiation? (if tumor boy's too big, I won't be) Will proton radiation work to halt and maybe even reverse growth? I’d really, really, really like to avoid more brain surgery PLEASE.

I mean, I’ve had eight (count ‘em eight) of these suckers already (three in the last five years) and, if I need one now, it’s gonna be a two-parter. Why? I don’t have enough spare skin left up top to close up the incision after they take out my uninvited guest. Surgeon Fred would have to take a graft from elsewhere and patch it in. This would be a big, long, involved, messy deal. On top of that, every damn time they cut open my head, my balance is worse afterwards and it's pretty fucked up as it is.

FYI, this sucks.

Yeah, I’m a little tense and nervous and I’m probably going to engage in a rare daytime gummy too. Admit it, you would too. Also, pineapple habanero, mmmmmmmmmm! 

I only mention it but eight brain surgeries ought to qualify me for some super special compensation. Fer instance:

• I should be able to live in a world that does NOT contain fascist, asswipian racists and bullying, shit-stained, barely sentient, profoundly dimwitted and greedheaded underpants gnomes like the ones who populate the US and run the current US government. 

• In my rightfully rewarded universe, I have NO problem digesting dairy products such as REAL ice cream. On hot days, such as the one we’re going to have today, I could eat dish after dish of cookies and cream and not suffer any nasty aftereffects. Also included in my restitution, NO weight gain from consuming a gallon! Duh.

• Transporter beams – want one, NEED one. The roads round here are absolute shit and, under the current idiot administration, they’re not gonna get any better. It’s only 14 miles from Valhalla to Healthcare Central but it may as well be an unpaved million miles. So, a transporter beam for your alway-in-hospital girl, please.

I don’t ask for much. Ya know?

More Fun with NF2

I had a check in with the nurse practitioner who works with my neurologist, Doc Plotkin, specifically with regards to the chemo med I’m on. The pill is supposed to be inhibiting the growth of my myriad fucking tumors.

I’ve been having some new, increased stupid symptoms over the past couple of weeks which may be nothing (just a “blip” as Christina termed it) OR it may be something to be concerned about and acted on.

Joy. Just motherfucking joy.

New series of paintings up in the 
neuro/cancer doctor department 
that I frequent at MGH. I’m not 
thrilled about the new amateurish 
farmland themed work. The previous 
paintings were Rothko-esque (if Mark
 was, perhaps, microdosing a bit 
whilst at the easel). I liked those better.

I’ve got swelling and numbness in my left foot and ankle, going up into my calf which may be related to one of the tumors hanging out around the motor cortex section of my bean. The last time a meningioma got too cozy in that area, the connection between my brain and left leg was lost. I had to train my brain to communicate with my leg again. Yeah, that was no goddamn fun at all. I spent WAY too much time inpatient at Spaulding Rehab (during COVID no less) and in a wheelchair at home. 

What happens now? Over the next week I keep working out – doing my recumbent elliptical time and PT exercises and monitoring how my left foot, ankle, and calf are dealing with it. If the swelling and quasi-numb feeling continues or worsens, my September MRI gets moved up to now or real soon-ish.

What happens if, despite the chemo meds, the tumor has had a growth spurt? MORE brain surgery isn’t optimal for a bunch ‘o’ reasons but proton radiation might be on the table. I had that a few years back for the monster on my thoracic spine. The worst part about radiation was the daily trip from Valhalla to MGH and back. I only mention it but 93 sucks hordes of giant bantha wang.

I’m really not happy about all this. Why can’t I have regular, normal old people problems like:

• My ankle’s swollen because I tripped walking up the stairs. (I haven't but it's a good excuse, right?)
• My foot is a little numb because I’m breaking in a new pair of sneaks.
• My calf’s a bit sore because I did too much time on the elliptical yesterday.

I mean, these are nice, reasonable old people issues. I want some of this instead of having to always play Which-Tumor-is-Triggering-My-Body’s-Dysfunction-Today?

NOT my favorite game! 

Irregular Galaxy Doods

Resident Stranger

H.R. Giger

Sometimes I feel like an alien.

A stranger in a strange land but NOT a stranger as written by Robert Heinlein (the Ayn Rand of science fiction – i.e. an emotionally stunted cartoon). Unless the land we're talking about is found within Starship Troopers. In that case, yeah sure, I do kinda feel like a stranger in a starship troopery sort of land.

The point? I have a deep connection to a few people – it’s not a big group. I’m not filling stadiums here. Why not? Amongst the reasons, it’s how some folks interact with me vis-à-vis my little tumor infestation.

Fer instance, intellectually, I can feature that Catroina (who I’ve known longer than forever) honestly cares about me and my struggles. Still, she hasn’t once, in our long-ass lives, wished me luck on an upcoming surgery, sent a get well card OR even asked how I’m doing/recovering. Same with Marco. Both happily, on their own/no prompting adapted to my new socializing dynamics after the old hearing went south though.

BUT, if I so much as allude to a past or upcoming surgery or a nasty outcome (like when I lost the use of my left leg – which is back now, thenx) Marco clams up or changes the subject or has to stop texting immediately. Catroina? There’s no point in texting or emailing her any of my health news – she never responds. Odd, no?

These are just two examples. Two friends, two not terribly evolved adult behaviors.

I do get it – there’s something funky in their social wiring. It ain’t me, babes. Some folks just can’t deal with scary, disabling, life and death health shit. It’s a real mellow-harsher. Life can be like that…ya know?

I can be pretty matter-of-fact about death. I know I’ll get there faster than others (a race I hadn’t originally planned on winning). Talking about basic logistics can be off-putting. (i.e., I’d like to be buried at sea – that is – just toss me over the wall at high tide. Giant statues of Bastet should be placed along the seawall upon my demise. Offerings of kibble should be left at her base daily to feed her priests and priestesses. I’d like a weeping willow planted in my memory somewhere because, unlike Evita, I want someone/thing always melodramatically sobbing for me.) Apparently, having a dark sense of humor also weirds some of my friends and acquaintances out.

I understand. Plus, few are are able to join in with my giddy interests in my new scars (which I’m inevitably thrilled about and eager to show off. Like yeah, I just made it through something big and ultra scary and this is, like, my merit badge. Please, gaze on it and applaud!).

Back to the point though – I don’t expect hospital or home visits with forced jocularity or deep, depressing sympathies. Actually, spare me, PLEASE! Send some funny memes or a good luck text with a pic of your dog/cat/goldfish instead. Cookies are always in good taste too (white chocolate/macadamia nut plz!). Just gimme a simple, basic acknowledgment that I’m going through some heavy shit. Let's not go all dismal and shit – k?

Without necessarily intending to say so (or maybe I’m being too generous and this exactly what they mean), they’re telling me I can only be loved if/when I’m healthy.

What I do as a result of folks like Catroina and Marco’s seeming rejection of me at my weakest, is that I keep more to myself. I assume no one wants to know what’s happening in Donna’s fun, fun Neuro PlayLand. I feel that I need to project a Superwoman, upbeat, pshaw-this-millionth-grapefruit-sized-brain/spine-tumor’s-nothing-serious vibe at all times. Friends will unfriend me if I’m sick or less fun for too long. Or so my subconscious seems to think.

I will have fun with my nasty-ass disease. I’ll also have times when I’m sad as hell, scared shitless, and totally living in Bleak City.

And THIS, mes amis, is why I don’t like carnival rides. Life is enough of one as it is.