I had wanted to write something soft and sweet about Hento, because that’s what he was, but apparently that’s just not yet where I’m at. The last two and a half years (plus) have really kicked me in the teeth, and to lose my emotional support animal in that manner at that time just…
Let’s say there’s a lot of pain and anger, still.
The estate chaos is finally over, Autumn is peeking around the corner, the household is looking at our next steps together into a scary but exciting stage, and I’ve unexpectedly fallen in love with another dog far sooner than I expected to be capable of it.
Life goes on. I imagine my rage at the universe for what it did to Hento will cool eventually.
As we enter a new season here at Château Dinosaur, my thoughts turn again toward getting a handle on my most problematic post-thyroidectomy life change: brain fog.
It has been difficult – in part because of the brain fog – to try to convey to the people around me just how serious the issue is. We’ve all felt “a little out of it” before, or had memory blips, or been so fatigued after a late night that it’s hard to think straight, so people tend to assume they know what brain fog is and that it’s possible to just rest up and recover from it. It’s not. Also the term, “brain fog” sounds unserious and made-up, in no way capturing the debilitating and very real effects of losing your ability to marshal your higher brain functions.
With COVID-19 still ripping through the population here in the US, leaving millions in its wake to struggle with the effects of long-COVID, the seriousness of brain fog has finally been garnering mainstream attention. People dealing with various chronic illnesses like ME, CFS, and yes, hypothyroidism, have tried for decades to get the medical establishment and the general public to take this symptom seriously.
When I read this article from Ed Yong at The Atlantic, about brain fog, I legitimately shed tears. Brain fog is real, it’s a medical condition, it’s not psychosomatic, and it is absolutely life-ruining. We need people on this, urgently.
Within two months after my thyroid was removed due to cancer in 2020, I stopped feeling like me. Stopped being able to read more than a sentence before losing my handle on the words. Stopped being able to formulate complex thoughts. Stopped being able to write. Started making simple mistakes in my daily tasks, forgetting my vocabulary, feeling vacant. I felt like I was disappearing, had real fears that I was experiencing early-onset dementia.
At the time, I was trying to put together the release of my second book. It became impossible to do things like write press releases, communicate with reviewers, or contact press. I was supposed to do a Q&A – couldn’t answer questions about my own work. Couldn’t remember my own work. I still can’t. The entire release collapsed into a sad nothing, along with my hopes of launching a successful career as a novelist.
These passages from Ed Yong’s excellent article struck a knifeblade of truth right into my heart:
“Her memory, once vivid, feels frayed and fleeting. Former mundanities—buying food, making meals, cleaning up—can be agonizingly difficult. Her inner world—what she calls ‘the extras of thinking, like daydreaming, making plans, imagining’—is gone. The fog ‘is so encompassing,’ she told me, ‘it affects every area of my life.’”
“At its core… it is almost always a disorder of ‘executive function’—the set of mental abilities that includes focusing attention, holding information in mind, and blocking out distractions. These skills are so foundational that when they crumble, much of a person’s cognitive edifice collapses. Anything involving concentration, multitasking, and planning—that is, almost everything important—becomes absurdly arduous. ‘It raises what are unconscious processes for healthy people to the level of conscious decision making.’”
The article does offer a ray of hope: apparently brain fog can be reversed with proper care. It’s possible that I might recover my stories one day. All two of the people waiting for me to write the third book in my trilogy will no doubt be pleased by that. I would just like to feel like me again. It might sound weird to say I want to hear the voices again, but I’m a writer. Was a writer. Want being a writer back.
The 2020s have taken enough from me already. They can’t have my internal life too. I refuse.
Some time ago, I mentioned that my dog Hento saved my life and I wanted to tell you all about it. I actually wrote out the story in late April, but I didn’t post it at that time because I wanted to give it a proof-and-tweak first. Unfortunately, almost immediately after I wrote it, my recovery took a nosedive into the toilet and the resulting brain fog left me incapable of reading, much less proofing, anything of that length.
Now it’s so much later that parts of what I wrote are no longer completely accurate, but I like the idea of presenting the post as-is, like a time capsule; this is where I was on April 28th, 2020.
So, uh, apparently I had cancer?
I figure there’s no delicate way to come at that.
For a very long time now, I’ve had chronic pain and nebulous health issues that it just wasn’t really worth it to me to get into with a doctor. (Tried before, was ignored/gaslit/told to simply lose weight, no answers, moving target, comes and goes, periods of no/poor health insurance, I can live with it, so on and etc.) But the thing about meeting my fantasy dream husband and starting our life together is that suddenly my health and mobility matter in a way they never mattered before – to me and to the fantasy dream husband.
After the wedding in the fall of 2018, when I finally had health coverage again, he begged me to get serious about finding a doctor and getting to the bottom of things. I agreed but put it off a while longer while I concentrated on publishing Mornnovin.
But then, through a series of cascading escalations, my body insisted that I pay attention. By the end of summer 2019, I was deep into physical therapy for Degenerative Disc Disease while trying to figure out why I’m always tired and in pain, why my body doesn’t want to digest anything I eat, and what the heck continues to be wrong with my liver despite my never having been a drinker and eating a fairly “clean” diet for decades. Oh and also what was up with this big squishy thing on my thyroid that had suddenly decided to start getting bigger.
We did all the tests and ran all the scans, but as far as my larger chronic issues go, that’s still a great big shrug. So glad I wasted even more time and money on that for nothing.
The problem is that… we can’t really nail down the problem. Blood panels get mildly weird but non-explanatory results, while imaging continues to show nothing wrong. Yeah, my thyroid was getting bigger and had some obvious nodes, but function was okay-ish, by the numbers? And the molecular tests were inconclusive?
As 2019 wound down with no answers, still, and other things on my mind (holidays, work, finances, mental health and some interpersonal stuff, and the upcoming fundraising push for my second book,) I put the whole thing on the back burner again for a while. I’ve been living with chronic pain and tiredness since 1997; a few more weeks or months off from tests and doctor’s visits didn’t feel like that big a deal.
But that frigging thing in my neck.
All along, in the course of monitoring the thyroid issue, my PCP had been asking if it hurt or made it hard to breathe or swallow. The answer had always been no. But sometime in January, I realized that that had changed and I couldn’t say exactly when. She ordered yet another ultrasound. It was into February before I could get in for it. Then it took a few more weeks for the results to come in and for my doctor to get back to me. I missed the call, repeatedly. (I am literally never awake at 9 a.m., Doctor. I’m sorry. That’s just not my schedule.) I’m bad about returning phone calls because I hate them.
Abruptly, one night in late February, my dog Hento completely changed his bedtime routine.
While he is very pack-oriented and loves to snuggle and hang out no more than a couple feet from us at all times during the day, Hento has always been somewhat solitary after he comes back into the house from his bedtime potty trip into the yard. I’m not sure about his reasons – maybe it’s literally just because he’s got a massive coat and it’s always a few degrees cooler downstairs than it is up in the bedroom – but when he comes in at bedtime, he has a little drink, asks for a cookie, gives me an affectionate headbutt to the thigh, then settles down into his preferred sleeping space between the accent chairs and the coffee table in the living room. His den, I call it. He is truly, deeply, a creature of habit.
So I began to be alarmed by the sixth or seventh night of Hento coming in at bedtime, performing the rest of his goodnight routine, and then sticking on me like glue when I went back upstairs. Refusing to leave my side as I got ready for bed. Not even waiting for me to settle under the covers before jumping up onto the bed and stretching himself out along the length of my left side. Staying there sometimes all night if he could bear it, or relocating to the floor next to my side of the bed if it got too hot for him after a while.
Hento never jumps on the bed, and certainly doesn’t sleep there.
By the time he’d been doing this for three weeks, the thing in my neck was choking me in my sleep and I had to admit that it was time to be serious about returning my doctor’s calls. COVID-19 had already upended things, but she found a slot for me to come in within two days. I absolutely took that as an ominous sign.
The visit was brief and to the point: the most recent ultrasound had shown that the node was even bigger than the last time we’d looked at it, on October 29th. It was sitting right against my trachea. She didn’t like it. She’d consulted with an endocrinologist who also didn’t like it. They both agreed we needed to get that thing out of there. When I shared the news that the thing was now choking me at night, she was alarmed and adamant: get it out now.
Even with everything non-essential shutting down due to the pandemic? I asked her.
She was perfectly steady and insistent on the subject: yes. Immediately.
This news was… Well, I didn’t like it. I’m sure no one likes being told they need surgery, but I’m autistic and I need time to adjust to change. Not gonna lie, I spent a week or so shellshocked and trying to ignore the situation.
But Hento kept sleeping way up in my shit, night after night. Not just at the foot of the bed, where there was room. On. me.
Meanwhile, the bastard thing in my neck kept choking me. I developed a honking, irritated cough from the pressure against my trachea. In the age of COVID-19, try having a loud, persistent, dry cough. There is no one it doesn’t frighten – including yourself. But apparently, neither my scans, my doctor’s urgent referral, my described symptoms, nor the awful awful sound of my cough over the phone was enough to convince the ENT to even look at my case.
“Don’t you realize we’re in the middle of a pandemic?” the surgeon’s people snapped at my husband over the phone. I could hear the angry condescension from across the room. Of course we do. This is at her doctor’s orders. “We’re not scheduling anything, just because you think your wife’s situation is important.” Blink. Her thyroid is slowly choking her to death. “Sir, if your wife is really choking, tell her to go to the ER!”
Jon wants to call them back now that I’m safe and inform the nasty woman on the phone that it was cancer, you assholes. I can’t say I blame him. She was really terrible.
Obviously, I did not want to go to the ER, and much of the time I talked myself out of the urgency of the situation. I told myself it might not come to that, if I could just wait until services and healthcare were functioning more like normal again. Sleeping was dicey, but somehow I could handle the realities of choking in my sleep better than the vague prospect of turning up at the ER for them to do… what exactly? My thyroid and I were playing a game of chicken and I can be very stubborn indeed.
But Hento kept on me 24/7. And I mean this guy was really keeping an eye on me. There was no pretending that he wasn’t worried. After a particularly bad night, on April 7th, I decided to have mercy on his poor tender heart; I went to the ER.
That was exactly as weird and horrible as you might imagine turning up at the ER in the middle of the COVID-19 lockdown to be – with a strange cough to boot. We were intercepted in the parking lot by people swathed in head-to-toe PPE, who screened me and told Jon to wait in the car. I passed through several layers of interrogations where I had to assure those asking that my cough was definitely not COVID-19 before they would let me further into the system. Every time I had to stop to cough because of the irritation to my trachea, I was scrutinized with suspicion. Finally, they ran some tests but ultimately declined to admit me because I did not meet their tightened criteria. (Plus side, we do now have a very nice CT scan of the DDD in my neck.) They did, however, send me off with a fresh list of different ENTs to try calling, if the first one was refusing to see me.
I guess there’s something about the aura of saying you’re calling from an ER referral, because we finally hit paydirt – an ENT willing to speak to me and even schedule a tele-visit. Even luckier, after this guy looked at my scans, he didn’t like them either.
Even so, he wasn’t optimistic that the OR scheduler would put me down any time soon, just because of resource allocation as healthcare in Pennsylvania braced itself for the outbreak. He absolutely did want to get the chokey thing out of my neck as soon as possible, he just couldn’t say when that would be. He advised me to hunker down and manage my symptoms as well as I could and he’d try to get back to me before the end of the month. Two days later, on April 9th, I got a phonecall asking if I could do surgery on the 16th.
Holy crap when things start moving they really move. Honestly, that gave me some emotional whiplash that kept me dazed just about until the day of surgery. (Which was three days after my birthday, by the way. I know just about everyone has had a weird birthday experience in 2020, but that was extra.)
To abruptly end an already long story, the surgeon was planning to remove only the left thyroid lobe, but when he got in there he ended up taking it all. Everything. The whole thyroid and a couple of nearby lymph nodes to be safe. It looked bad, I guess. The pathology report, a few days later, confirmed his instincts.
How do I feel about this?
Well, we’ve already followed the recommended course of treatment for this type of cancer: full thyroidectomy. That’s that, case closed. So honestly, I just feel vindicated after the first surgeon’s office implied I was being an attention-seeking drama queen trying to tie up needed resources during an international health crisis.
Also, enlightened. That’s why Hento was so freaked out. Cancer’ll do that. Dogs have amazing sniffers.
Trying not to get up in my feelings about having an ongoing condition now (no thyroid) that will require medication for the rest of my life.
I’m still dealing with some choking for the moment, unfortunately, as I wait for the swelling to go down. But at least now I know I will stop choking. I don’t have to be scared anymore that the thing in my neck might squeeze the life out of me while I’m sleeping. And Hento can relax.
He slept on me when I came home from the hospital all woozy and sporting a nasty neck wound, and he slept on me the two nights after that. But I am pleased to report that apparently I’m now healthy enough for Hento to be back to spending the night in his little den in the living room between the accent chairs and the coffee table. That’s how you know I’m on the mend.
Really, I only wrote all of this out because I wanted you to understand that Hento saved my life. I absolutely would have kept pretending that the thing in my neck wasn’t that big a deal and would have tried to wait it out until it killed me. Hento was the one who convinced me I was really in trouble. Dogs don’t know how to bullshit you, not about stuff like this.
He was scared, and he told me so, and I’m cancer-free today because I listened to him.
Still from What We Do in the Shadows on FX. The hat is cursed.
It’s been… oof. It’s been a lot lately. As my last couple posts probably indicated.
But I’m still here, still trying to figure this shit out, still surviving. My thyroid replacement dose is now at a much more livable level, the brain fog has started to lift a bit, and I’m getting better at preventing major crashes. We’re still not sure what’s going on, but we have a couple of promising leads. Getting to the bottom of this is going to require the help of at least two more specialists, and I really struggle with the phone calls necessary to get that sort of thing rolling.
Meanwhile, ugh, the medical bills that are piling up around here. I’ve gotta say I hope you’re doing better than I am on the Working in Pandemic Times front, Reader, because I earned 92 whole dollars last month.
My brain is now functioning just enough for me to feel like I really need to be getting on with the promotion for this new book I have coming out in a few months, but not enough for me to actually do any of the things. A wonderful friend of mine who has PR experience is trying to point me at the tasks that need to get done, but I suspect it’s probably a lot like trying to get a kitten that’s all jacked up on catnip to study for a college physics exam. Sorry, Nova. ❤
So, yeah, I don’t have a lot to say today. I just wanted to poke my head up out of the muck to state that I’m still alive and kicking. Things were pretty dicey for a while there, so this seems important to say.
I hope you’re all still alive and kicking too, and staying safe.
For those keeping score, I can now add fainting to the list of health bullshit piling up around here as I adjust to life without a thyroid.
I actually have a lifelong history of fainting from some undetermined underlying cause, and then being fine afterward, but it’s been a while and this time my husband says I was turning blue. So that seems bad. And I can almost always track what (admittedly nonsensical) factor led to the fainting, but this time it happened after nearly no provocation.
Ten minutes, tops, kneeling down to pull some weeds. Felt weird, so I stopped. (I honestly am making a very real effort not to push myself and to be mindful of my current limits.) Went up to the porch to sit down. Next thing I know, my husband is in my face urgently instructing me to breathe and I guess it’s been about five minutes. He’d called an ambulance.
For those of you who’ve been wondering if I’m doing all right, following my full thyroidectomy and surprise cancer in April, I’m afraid the answer is no, I’m really not.
It’s funny. You expect these things to be so much more linear than they end up being. Have problem, identify problem, fix problem, problem all better. Haaaaaaaaaaaaaaah no.
There is this very nebulous post-surgical phase that I glossed over in one of my previous posts that can easily be summed up with the innocuous words “once we get my med dosages under control.” The ease of naming this phase is in directly inverse proportion to the difficulty of actually getting my med dosages under control. More euphemistically and also more accurately, I’m currently trapped in post-op Hell.
There was an earlier, more blissfully ignorant time in my life – about three months ago – when I imagined that adjusting to having no thyroid gland and relying on a carefully-prescribed dose of ingested thyroid hormone wouldn’t be all that dissimilar to living with an under-performing thyroid that had been slowly trying to kill me for at least twenty-three years.
I was so, so wrong.
For the first, I don’t know, three weeks after the total thyroidectomy, I felt like I was making slow but steady progress toward a new kind of normal that wasn’t all that different from my previous normal (which was nice but also sort of disappointing – I want to feel better now that I’ve addressed a persistent health issue, not the same!) But then, oof, things started getting weird. New symptoms showing up every week, a regular freakshow of bodily dysfunction.
Hair brittle and falling out. Eyebrow dandruff? Can’t touch hot things. Can’t touch cold things. Jitters. Freezing all the time, except at night when I’m drenched in sweat no matter how high we crank the a/c. Nausea. Weird new plant allergies. Intense hunger pain. (To clarify, I had not experienced the sensation of physical hunger since summer 1996. Lost it during the first trimester of pregnancy and never regained it until now — really suddenly and grippingly.) Vertigo. Blurry vision. Trouble focusing my eyes on a single object. Vocal weakness. Mood swings. Shoulder blade pain and crackling. Breathlessness. Weird leg pains. Hand tremors, body jerks, and lack of fine motor control. Brain fog. Tiredness. Tiredness. Tiredness.
Oh and by the way, the scar really itches.
It’s looking pretty good, though.
Probably the worst thing I’ve been dealing with has been the brain fog. There are days when I feel like I’ve never woken up. Days when opening my eyes takes more energy than I can summon. Days I can’t remember because I was so unfocused through the whole thing. I often struggle to read anything longer than a single sentence, because my brain can’t connect two thoughts to each other. When I try to read a paragraph, my eyes wander to another spot on the page. I feel like I can’t generate original thoughts or synthesize information. I’ve had to all but give up on the notion of making any kind of plans. I have no way of predicting when I’ll be functional and when I’ll be only semi-conscious.
Sometimes it’s worse because it’s been more than three hours since I last ate; sometimes it’s worse because I just ate something that I apparently can’t metabolize now. I’m having severe reactive hypoglycemia crashes that render the entire day useless. I was not hypoglycemic before. I have been on a gluten-free/dairy-free diet since 2004; the list of foods that I can’t tolerate anymore is growing at a cancerous rate by the day.
Right now, as I type this, it is the end of a brutal week in which I’ve fought tooth and nail to try to get to the bottom of just what foods are knocking me flat and what I can eat now for the energy I need in order to think straight and not get the shakes. I crashed yesterday but not today. Thursday but not Friday. It’s always a step forward, then another step back. My husband has been the real hero of this story, ever ready to leap into action when he can see my blood sugar taking a sudden massive nosedive.
For the moment, my mind is as clear as it ever gets these days, so I’m taking advantage of the pseudo-clarity to get some thoughts down. Most of the time now, I feel like I’m disappearing.
Apparently white rice in all its forms is now The Devil, which comes as a real blow and a major challenge to a gluten-free lifestyle. Also, apparently, oatmeal and a banana is okay for breakfast, except when it’s not, and a small glass of orange juice is Right Out – except as a pick-me-up when I’m having a major crash. Potatoes seem to be safe for now, but onions live on the edge of Dangerville, and shrimp are okay when I cook them this way but not that way. Fruit smoothies are good, but not for breakfast. Eggs are safe. Sugar is not. Honey is eeeeeeeeeeeh. Green leafy vegetables, walnuts, and grapefruit mess with my meds. It’s a frigging minefield.
And now I’m all bogged down in food talk, but that’s not the point. The point is that my own body is now an uncharted land that I have no idea how to navigate, and hooboy is the terrain inhospitable. My last visit to the doctor was in early May, and my next one won’t be until the end of this month. That’s a great big wasteland of what the hell is going on and what am I doing. I’ve had two med adjustments and one liver ultrasound in the interim. After looking at my latest bloodwork, the doctor called to ask if I was even taking one of the meds prescribed, because I guess my levels were shockingly low. The current state of my health is, in sum, a total shitshow.
So, ha, this notion I was sold that I’d have my thyroid removed, be down for “a couple of weeks,” and then be able to “resume normal activity” was a gigantic fat lie of mythic proportions. I needed to have it done, but some realism from the professionals on this subject would have been nice. When will I actually be able to enjoy something like normal health again?
* huge shrug *
Naturally, this has all really sucked right in the middle of the time I was supposed to be using to craft and implement my marketing strategy for the BOOK you might remember I have coming out later this year. It is, for the record, intensely difficult to perform businessy functions when you’re barely literate from brain fog and can’t process the information you do somehow manage to read. Marketing plan? I barely even know what those words mean right now. A friend of mine very helpfully threw together a pre-launch timeline for me and it looks like they wrote it in a foreign language.
I’m actually, no lie, amazed that I’ve been able to type all of this out. This is the most I’ve been able to process words in months. I fully expect to be back to near-delirium tomorrow.
So for now, here’s me waving to you from the eye of the storm. Here’s hoping I wind up being Dorothy in the end and not the witch smashed flat under a crashed house.
When I have my words again for another brief spell, I want to tell you the story of how my dog saved my life.
You know that thing where you feel fine all week, but then as soon as you hit the weekend/your time off, you crash hard with some sudden mystery illness? Only you weren’t actually fine before, you were just managing to push through because you didn’t have a choice, and then when you finally have a minute to rest, your body can’t keep pushing anymore?
Yeah, that thing?
That happened to me in a big way after my rather naïve post about not having anything major on the horizon for the first time in forever. I should have known. I should have known.
The health stuff hit me hard this past June and has not let up.
The truth is, I’ve been doing my best to push through chronic pain and snowballing health issues since *checks watch* oh, about 1997. Back then, doctors told me I was too young for [insert symptoms I definitely actually was experiencing despite their dismissal] and that I just needed to focus on losing my pregnancy weight. That was, of course, total bullshit.
I’m still whirling around on the diagnostic carousel at the moment (and trapped in insurance bureaucracy Purgatory,) but there is mounting evidence that in fact I was right all along about what I tried to tell my doctors I thought was happening and now the matter has come to a head.
So, that’s neat.
This of course is my way of explaining why I utterly, completely, and in all other ways abjectly failed to do any of the book promotion that I had every intention of doing over the summer. Sorry, Mornnovin. I love you, but you have sort of become the neglected firstborn child. Because now it is time for me to begin thinking about all of the pieces, parts, and processes that will go into bringing Book 2 to life.
While still juggling this health crap.
I do have hope that we’re approaching some answers and a treatment plan that will see me starting to feel more human soon. In the meantime, it’s book-planning season.