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.
Meet Chief Brody, the most excellent of rescue mutts.
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.
After a long, grim winter that refused to quit, it’s finally spring. Robin’s egg blue sky, fluffy clouds, a gorgeous breeze, and all the birdsong you could hope for on such a perfect day. I sit out on my back porch and watch the leaves dancing in that soft breeze with an even softer Husky by my feet. Hento lifts his snoot and gently sniffs what the wind brings to him, radiating contentment. We’ve done this, almost exactly this, many times together; it’s one of his favorite ways to spend a fine afternoon.
It’s impossible to believe that right now, in this perfect spring moment, my dog is dying.
He doesn’t even look sick. A little tired maybe, but he has always taken things at a slower pace than most other dogs. Shortly after my thyroid crisis in 2020, he was diagnosed with hypothyroidism too, which had explained a lot about why he wasn’t the ball of energy and mischief that people always expect from a Husky. That could be why it took us a while to notice the first signs when the lymphoma hit him.
I don’t know. I don’t know. My vision blurs as I look down at my sweet Hento by my feet and I just don’t know. Could we have bought him more time if we’d caught it sooner? Were there any signs he would have let us see? For the four years he’s lived with us, Hento has always remained something of an enigma, past trauma turning him inward to guard his feelings. I get it, but I’ve always wished he would let me in, now more than ever.
But even if he had, would I have noticed? Jon and I have been wrapped up in our stupid human bullshit all year as we’ve handled the passing of his father in February and the resulting estate chaos. We keep saying we’ll take Hento someplace nice for a long weekend when we’re done managing the estate.
We keep apologizing to him for the time we have to spend away from home, cleaning out the old house to sell. It’s a crumbling disaster and the toll the work takes on us is as brutal emotionally as it is physically. We come home drained, to a dog who doesn’t even seem to miss us because he’s so angry at us for being gone. Another emotional blow.
When this is over, we promise him. We’ll take you someplace nice and relax together when this is over.
Except there is no together now when it’s over. He is leaving us and there isn’t enough time to say goodbye. He doesn’t even look sick, not today, but it won’t be long they say. They say they can’t believe he walked into the hospital on his own, as sick a boy as he is. They say we can try treatment, but it’s a matter of buying him days, weeks, months at the optimistic most, and we need to think about whether he needs that or whether we’re being selfish. They say a lot of things I don’t really hear because there’s just a deafening roar inside my head.
My dog is dying. He can’t be dying. We didn’t have enough time. We just wanted more time.
It’s ten days later and another picturesque April afternoon. My dog is dying, dying, dead. We didn’t have enough time.
How can the sky be so blue while my heart shatters inside my chest? The universe doesn’t care that he saved my life and it was my turn to save his. Entropy is pitiless and absolute. Hento was alive, and soft, and sweet, and kind, and now he’s gone.
He’s gone and it’s a beautiful day and we didn’t have enough time.
Hento enjoying one of his final spring afternoons. 11/21/13 – 04/29/22
I just finished watching the national memorial service for our Covid dead, arranged by President-elect Biden and Vice President-elect Harris. I thought it was important to participate because through all of this, we have never collectively been allowed to mourn the grave injury that we are all suffering. In fact, half of the country is actively denying the injury, trying to gaslight us into believing there is not in fact this gaping hole in the nation and in our hearts where nearly half a million of our friends, co-workers, and loved ones were just a year ago.
That our incoming president felt the necessity of acknowledging the ache of this national wound — simply, humbly, without bravado, but with solemn sincerity — and inviting all of us to join him briefly in sharing the burden of that grief before turning toward the celebration of his inauguration, is so decent. So human. So normal. Almost as soon as the service began, I started sobbing uncontrollably for the stark contrast between this decency and the grotesque inhumanity of the monster who has been subjecting all of us to the whims of his diseased psyche for the past five years.
Now that the destructive T**** regime is coming to an end and the weight is beginning to lift, I’m starting to realize just how constantly triggering it has been as an abuse survivor to live under the national thumb of an abuser whose name and face and relentless indignities have been centered so prominently in the daily business of our lives. Having escaped abuse before, I know that the period after you get free is when you collapse under the weight of everything you’ve been carrying for so long. It’s no surprise that I would find myself suddenly heaving with sobs just because an average Joe and his Vice President addressed the nation for a few quiet minutes to recognize the collective trauma we’ve been unable to process because it is ongoing. Because it is in dispute by those who would gaslight us and traumatize is further. Because we’re supposed to be focusing on going to our jobs and doing our work and “supporting the economy.” Because to truly admit to the vastness of this loss, this grief, would mean having to admit that we are in real trouble and it is our neighbors, friends, and family who got us here by uncritically swallowing the lies of a sociopath.
This grief, this vast national grief, is too big for any one of us to bear. As I watched the memorial lights serenely reflect into the pool of the National Mall while our incoming leaders joined us in a moment of silence, it hit home that we don’t have to bear it alone anymore.
It’s going to be a while before I’m okay. Trauma does a number on you in so many ways, and you never know how it’ll pop back up or when. If you’re also not okay, that’s fine. We’re all in this together and we’ve all been through a lot.
But for now, it’s good to be reminded that it’s possible to expect and see decency in our leaders. The last administration was a four-year stress dream. Let’s wake up, wash off the funk, and remember that no matter what our abuser tried to tell us, we do all have inherent worth, there are people who love us and want us to succeed, and selfish cruelty is not normal or tolerable.
Two years ago today, I stood in front of a small gathering of friends and family and married the best man I’ve ever known. It was a breathtakingly beautiful moment in a total clusterfuck of a day.
About a month ago, knowing that this anniversary was approaching, I set out to write the story of our wedding, for posterity. The truth is that despite planning the event for one year and ten days, and it being a deliberately simple affair, factors beyond our control led to the thing being an almost total disaster. I’ve already started to gloss over parts of it in my memory in the course of trying to preserve only good feelings about the day, so it’s lucky I chose this year instead of two or three from now to set it all down.
But because the disaster of our wedding day began before the day itself, I’m going to have to go back a bit.
Holy mackerel, I know some truly wonderful people!
Two weeks ago, I saw this cute post from Guylty, a friend and fellow blogger of the Richard Armitage fandom persuasion. She has gotten into crafting some really impressive projects in the last few years and one of her latest masterpieces are these tiny, tiny book earrings.
photo by Guylty at guylty.net
Little Hobbit books!
Naturally I was charmed, given my special relationship with The Hobbit and also my lifelong love of miniature treasures, and I told her so. To my surprise and delight, she offered to send them to me as a much-needed pick-me-up. Heck yes! I’ve actually been thinking of them every day since she made the offer, wondering how quickly they could get here.
Can you believe they’re here already, all the way from Dublin?!
I always check the mail while I’m waiting for the hot water to boil for my late-morning tea, so this was a lovely little diversion to be able to sit down with at Saturday breakfast.
Look at that adorable envelope. Did Guylty make it herself?
Awww!
Inside I found this assortment of goodies. A really nice handmade Richard Armitage/Shakespeare postcard, the long-expected Hobbit earrings, and… something else? What could it be?
They’re so cute!!! I love them!
But what is this?
Another handmade envelope, this one intriguingly tiny. The postcard hinted at an additional surprise treat to make up for the fact that she’d had to reveal the secret of the Hobbit earrings by asking for my address. I love Guylty’s imagination, so I was keenly interested to see what lay inside this “extra surprise” envelope.
OMG! OMG OMG OMG! SHE MADE MINI BOOK EARRINGS OUT OF MY BOOKS THAT I WROTE!!! AND THEY LOOK SO GOOD!
Eeeeeeeeeeeeeeeeee!
I was so excited that I rushed upstairs to show my husband and promptly fumbled them all over the floor with my ecstatic hands. I LOVE THEM! Looks like I know now what I’m wearing at my book launch party! XD
THANK YOU SO MUCH, Guylty! You are creative, fun, extraordinarily talented, and a good friend! This delivery definitely gave my mood a lift! What great medicine for my soul.
I was given this orchid plant last October, as an anniversary present from my wonderful partner in crime. It had a number of exquisite blooms on it at the time, which started thinning and getting ready to fall right around Christmas. The last of them hung on until mid/late-January. I derived much joy from them in that time.
After the last flower fell, the flower spike itself soon began to wither. That, I concluded with fond regret, was apparently that.
But…
The leaves of the plant still looked so shiny and deeply, vibrantly green. While the plant was brought into our home in order to provide a view of the orchid flowers which I love so much, I do also love leaves on their own merit. And these quite obviously still had some life in them. It seemed a shame to give up on them.
So I cut back the dead flower spike and continued to water the plant as normal through the winter.
In the spring, I noticed that while the plant was still chugging along, it was looking a little droopy. I’m basically an utter novice where it comes to plants, coming as I do from the desert where nothing grows unless it wants to, but it seemed to me that maybe it was overwatered? I cut down to two ice cubes a week from the recommended three. The plant rallied.
But then I noticed it was suffering another ailment: the leaves were drying and cracking. It was getting too much direct sun in the spot I’d been keeping it in. Oops. I wiped the leaves down with a wet towel and moved it again.
In the early days of summer, I made an observation that gave me a tiny thrill of satisfaction: new leaves! There were new leaves coming in! I was managing not only to not kill the plant, but to give it enough love to let it grow!
That satisfaction turned to giddy excitement one day when I saw something else happening to the orchid plant. A small green tendril of some kind was poking out from between the leaves. Never in my wildest dreams had I ever imagined that the plant might flower again under my care, so I thought this was probably a new bit of root. Still exciting, because it would mean life. But to be sure, I asked the internet. The internet told me that I would be able to tell a root from a flower spike by the shape on the end. The end of an orchid flower spike, apparently, has sort of a mitten-y shape.
WELL GUESS WHAT!
I dug out a stake and began coaxing that bad boy into an upward trajectory. As a complete and total flower novice I was surprised that apparently orchids try to grow straight out sideways, but I rolled with it. Every day, I would check its progress like a proud parent marking her child’s growth on the wall. It was a big day when I noticed what looked like the first bud forming. We eventually got six.
The house next door to mine has been empty for the last two years and something of a jungle has grown up on the property, swallowing the crumbling structure whole. I didn’t mind because it blocked the view and also, some wild Rose of Sharon hibiscus sprang up in the space between that property and mine. Lovely. The overgrowth was so intense that it actually blocked the morning light from coming directly in the northeast windows in my dining room, instead giving us nice diffuse sunlight on the dining table.
Because time and perfect lighting stand still for no man, the bank finally sent someone around to chop down the jungle and try to get that house ready for sale. Suddenly the orchid plant was getting blasted with direct sunlight first thing in the morning and the new buds started to sag. I had to scramble to find a new home for it where it was getting light, but not too much. Now it’s hanging out on the other side of the house in the living room, with all of the books.
I was a little worried about those sagging buds that had gotten the full sun blast, but they kept getting bigger and looking more and more like they were about to burst.
And then, yesterday,
We have separation!
How long would it take to see that turn into a flower, I wondered? I have no idea what I’m doing here. This has all just been a happy failure into success. But look what I woke up to this morning.
Maybe it seems silly to you that I would go on and on about one little orchid plant that has sprouted a single flower a year after it was given to me. And maybe it is silly. But maybe, also, this is about more than a plant. Maybe this is also about all of those years I spent dying in the desert where nothing grows unless it wants to, and how I don’t live there anymore because I escaped through epic struggle that didn’t end even after I made it to Pennsylvania.
Maybe it’s about salvaging life when it looks like that life is over. Maybe it’s about perseverance even where there’s no reason to think anything will come of it. Maybe it’s about changing the narratives we’ve come to accept about ourselves — “Oh, I can’t grow anything. I have a black thumb. Ha ha.” — and understanding that sometimes it’s personal growth and sometimes it’s about the environment we’re trying to survive in. Sometimes we just need to leave the desert.
Yesterday, looking at the last $62.36 in my bank account and the massive stack of hospital bills in front of me, I had a minor breakdown and put out a post asking for some help limping through this leg of the COVID-19 crisis. I never doubted that at least one friend or two would float me a little grocery money, because I know that I’m friends with some genuinely wonderful people who aren’t blowing smoke when they talk about wanting to help take care of their community.
I absolutely did not expect for twenty friends, acquaintances, and almost-strangers to throw enough money my way to easily cover the cost of groceries and prescriptions for the next three months. Holy crap.
It sounds trite, but I honestly cannot express how moved and grateful I am for the help. I feel loved, and now I have the peace and strength to stand up to another day of this nightmare. You’ve done a small miracle.
This is community. This is humanity. Thank you. All of you.
Due to the generosity and compassion of, like, everyone, my needs are taken care of for the time being. Thank you all for your assistance. Keep being wonderful.
Hey, friends.
Some of you have shared posts over the past few months stating some variation on the offer that if any of your friends are in need of help in the midst of all of this, they should not be afraid to ask you.
Well, this is me asking.
My work instantly stopped in March, with the lockdown. I’ve been limping along since then on the one government stimulus check, the generosity of one very lovely person just after my surgery in April, and what little I had in the bank, all while my medical bills have been piling up.
I’m about to enter a new billing period with nothing now left in the bank* and only $200 worth of contract work on the horizon (not to be paid out until September 14th.)
Jon still has work and has been keeping us afloat, but it’s not enough and frankly the pressure is crushing him. Obviously, I have no idea when things will pick back up for dog walkers like me. Quite probably not until next year. Who knows? And I am definitely not well enough to go out job hunting or work shifts at the sorts of jobs that are available right now even if I could get one of them. (Nor would it be safe for me to do so.)
So, yeah. I could really use some of that community support you’ve been talking about, if you’re still in a position to offer it.
I don’t have Venmo or Ko-fi or anything fancy like that. Just good old-fashioned PayPal at vulcanelf[at]gmail[dot]com or paypal.me/dogwoodhousellc. Every little bit would help me pay off another medical bill or buy my meds and groceries.
Thank you for reading this all the way through, and I hope you’re all weathering the nightmare that is 2020 better than I am. ❤
*Except Kickstarter money that belongs to the TRAJELON project, which is not for me to spend on my own personal expenses. I just want to assure everyone that the TRAJELON money is safe and secure and there are no worries about that.
You know what’s weird? Everything, right now. What’s somehow even weirder? That I still have a book coming out in three months, which is both the most surreal and most mundane thing, at a time when everything else is bonkers.
But there it is! I have a book coming out in three months, as you can see on this very spiffy countdown clock.
Not just any book, either. This one… is very special to me.
My first book, Mornnovin, came into being after many years and many drafts. The first time I started writing it, I was in elementary school. I always intended for it to be just the beginning of a series, but it took me a long time to resolve – out of all the possibilities – just what would come next. That makes sense, because I was young. I hadn’t yet figured out what I wanted or needed to say. At that point, I was just transcribing my favorite fantasy novels into my own universe.
That’s not to say I wasn’t racking up life experience. I was, in fact, racking up too much life experience. By the time my teen years rolled around, I was living in a soap opera at least partially of my own making. It was stupid. I was stupid. Then poof! hey presto! I was pregnant in high school, then marrying my rapist to raise our child together.
Everything I’d planned for my future vanished in the blink of an eye. The stories I had in me all turned dark. That year, I wrote a sequel to Mornnovin in which I was most definitely punishing myself for “ruining my life.” It was bleak, but it was what I needed to write at that time. I’m glad I never published it.
Time passed. Things changed, or didn’t. I grew up in some ways, clung stubbornly to immaturity in others. I stuck out my time in that terrible marriage, and got the hell out the minute my son and I had an escape route. It took eighteen years.
That was eighteen years with someone who, at best, thought of my writing as a waste of my time. Something annoying that pulled my focus away from him and housework, and gave me unrealistic ideas, and wasn’t even earning any money.
Free at last, and having just finished writing what would be the final version of Mornnovin, I set out into my new life with the goal of finally being able to give my writing career the earnest attention it deserved, now that I no longer had a judging naysayer hovering over me. I wrapped up final edits on Mornnovin in late 2015, took a short breather to work on my query materials, then started writing a new Trajelon in January of 2016.
I finished it only six months later.
My experiences over the previous years of living with my abuser – of surviving gaslighting, sexual and emotional abuse, crazymaking, constant manufactured drama and unnecessary financial hardship, my physical and mental health needs being minimized, watching my son suffer daily emotional trauma at the hands of his father, my identity being suppressed and warped to survive the toxic environment, and all of the accompanying depression and anxiety – gave me a different perspective than I’d had the first time I wrote Trajelon. Beyond simply feeling sorry for myself as I had all those years ago, I now had something to say about going through all of that and coming out the other side.
It was quick work to write, but not easy work.
All of this is a story that I’ve actually told before, but I wanted to add something to it today. If it sounds to you like Trajelon is probably going to be a huge downer to read, well. Maybe. Maybe it will be. Writing it was certainly difficult at times, when I would have to walk away and practice some gentle self-care before returning to the keyboard and putting myself back into the necessary headspace. I am lucky that I finally had the safety and space to do that. I recommend taking that approach while reading it too. But I do think, without any trace of ego, that it is an important story to have brought into the world. This is not torture porn; this is a story of survival. Of triumph against darkness, pain, and loss, and against those who would weaponize your own vulnerability and empathy to hurt you.
How many fantasy novels have you read that are about defeating your abuser and choosing to stand fast against your depression to fight for the hope that tomorrow will be better?
(Seriously, if there are others, point me to them. I’d like to read them too.)
It might sound odd to say that I’m excited about debuting a book of this character, but I am. It genuinely fills me with joy to know that in three months, this story will be born into the world for all to see. I kept my pain in for such a long time – a lonely, heavy burden. By setting it free, I deprive it of its power. I name it and sever its hold on me. I show the way to others carrying the same kind of pain. I give them the tools to take back their strength. That makes me incandescently happy.
I was excited to publish Mornnovin because that was me finally realizing my life-long dream of publishing a novel, any novel. Being a teller of fantasy tales, which is all I ever wanted to be when I grew up.
I’m excited to publish Trajelon because I truly feel that this story adds something necessary to the universal library. Writing it was arduous, often harrowing work, and every piece of it has been crafted with care; I’m proud of what I created. I can’t wait to share it with you.
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.
Hento stretched out along my left side in bed. There’s no room but he’s insisting on it anyway.
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.
FINALLY. Results.
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.
And Hashimoto’s thyroiditis, but that’s further down the page.
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.
My wonderful dog hero, looking up at me with love.
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.
Hey, friends. How are you doing? Crazy, stressful times, but I hope you’re finding ways to cope.
It’s been completely mad over here, too. After several months of buildup, my medical situation finally exploded into an emergency early in April and now the dust is settling. Not to get too much into it, but I’ve had a full thyroid removal in the middle of a pandemic lockdown, because it was slowly choking me to death, and it turned out after the fact to have been cancer.
Drama!
Also apparently I had (Have? Had? Is it the kind of thing you can ever be rid of, even if you no longer have a thyroid? I’ll have to find out.) Hashimoto’s disease. So, whew! Glad that thing’s out of there.
To head off any concern, that’s that. No further worries or ongoing cancer treatments. For all intents and purposes, as much as anyone can ever say this about any cancer, I’m “cured.” Now it’s just about the recovery and settling into the right dose of the meds I’m going to have to be on in perpetuity, going forward.
While this whole episode obviously sidelined me temporarily, a few things have still been happening on the book and I’m slowly starting to get back to work.
I did manage to get the emails sent out with the short story and Mornnovin eBook download links before I went in for surgery, so if you didn’t already get yours, let me know.
I also spent the last hours of my pre-op time working on a new page at my blog where all of the Asrellion short stories will live permanently behind a give-what-you-think-is-fair paywall. You can find that here. It will continue to be updated as time goes on and more stories are written/added, so consider that a living page and check back often. For the time being, the reward short stories for this fundraiser (“Witness” and “Black Books”) will remain available only to those who backed this project at the relevant reward tiers. Probably until after the book release.
Also – and this was a lovely get-well-present – the first proof copy of Trajelon arrived the day I came home from the hospital. It looks amazing, inside and out. I did submit an updated cover file because the alignment of the spine was a bit off, but other than that it’s perfect. The second proof is in printing as I write this.
Given the current pandemic situation, Kirkus has shifted to a digital-only review model until further notice. Meaning, they’re not accepting physical book submissions at this time. That being the case, there was no reason for me to keep waiting on a perfect proof copy and I went ahead and submitted Trajelon for review. That was incredibly scary to do and felt super legit. There’s obviously no predicting how that will turn out, but a good review from Kirkus would be a big deal for an indie publication. Fingers crossed!
And because I’ve already got the book in to Kirkus and have my estimated review due date in hand, that means I am now in a position to announce a solid release date for Trajelon: The Way of the Falling Star Book 2. This bad boy will hit the market on Tuesday, November 24th, 2020. Backers can expect to receive their copies at least on November 17th if not earlier, mail systems willing.
Luckily, I’ve got some time to work on the other backer rewards. While I am beginning to feel more myself, I discovered this week when I tried to begin work on some of the jewelry that my hands and focus are still a bit shaky. That’s getting better all the time, but it was a reminder that I need to allow myself to keep a reasonable schedule on all of this and not push. I definitely don’t want to put a pen to that lovely parchment I ordered for the maps while I still have shaky hands!
So that’s where we’re at on this first weekend of May. Waiting on the second proof, waiting on Kirkus, waiting on my body to heal. Waiting, waiting, waiting. This is probably a good time to look into other review and publicity options, while I’m not quite ready to do much else and it’s still too early to know whether or not I’ll be able to make launch party plans.
I will also, as my feeble meatsuit allows, begin in the coming days to package up and send off the paperback copies of Mornnovin that are due to backers. Do feel free to message me with any questions about the project or the world of Asrellion in general and avail yourselves of the lovely FAQ. We’re going to get this thing done.
I’ll talk to you all again soon, and please, please: take care of yourselves and stay safe.
Autistic Wordpainter 