Home » personal » greetings from the eye of the storm

greetings from the eye of the storm

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.

neck scar 3 months

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.

5 thoughts on “greetings from the eye of the storm

  1. Oh my goodness. I’m so sorry you’re having such a dreadful time. What do the doctors think is going wrong? Presumably this is not the aftermath they expected from your surgery? Are they in denial in case they did something wrong? Huge hugs. Hang in there… and maybe see if you can bring forward your doctor’s appointment? Not easy in the current situation,
    I know… 😖 😘😘😘

  2. You didn’t ask for advice but I’d try to see the doc sooner than the end of the month. I can’t imagine anyone thinks this is the range of normal. Praying for you.

  3. Dear Alyssa, I‘m so sorry to read that things are really tough right now. It actually sounds horrific, not knowing what works and what doesn’t. And it sounds as if the doctors haven‘t exactly been clear on what you were to expect. I just hope that things will begin to work out soon so that you can manage your health effectively. As foerthe book – looking forward to it, as always, but please take your time if you can. You yourself are more important than your book. All the best!

  4. Once they get the dosage right, you will be fine! I had my thyroidectomy 35 years ago. At the beginning, I had many of your symptoms and my blood test kept indicating I was at “normal” levels for the TSH. Well, normal is really a wide range, but I know I was wanting to put my head down on my desk every afternoon and sleep, and I gained 30 pounds in a few months, although I wasn’t really eating any more than normal. My metabolism was just so slow. So I armed myself with as much information as I could, made a list when I saw my doctor, and pretty much insisted they keep fiddling until I felt better. Everyone is different. I know that my own tsp is really almost at the point where they think I should be hyperthyroid, but of course I had none of the symptoms. My own dosage now includes one day a week where I take half a pill, so it really is sensitive and you might have to just keep fiddling for a while. But it will be better, and as for your scar, it’s remarkable! Mine was still much more pronounced at your point, and mine has pretty much disappeared, so I’m sure yours will disappear even quicker! Hang in there. My advice is just keep a running list of symptoms. Good luck!

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