It’s like I’ve been under water. Like I sunk so far down that I couldn’t get back up. I could still see the rays of light wiggling on the surface, and kept swimming and swimming toward them. Swimming toward you. But the swimming no longer moved my body.
It started a little over a year ago now. The ENT pressed his fingers into the incision in my throat, his silver hair a blur in the corner of my eye. My friend, Gaaby, sat in a chair against the wall, the tip of her pen to a page in the notebook opened over her lap.
Her name is pronounced Gaw-by, by the way. As in short for Gabrielle. A person messes that up once, I politely correct them. Twice and they might find my fist in their teeth.
Say, “EEeeeeeeh,” the ENT said.
I tried until it hurt. But my voice made no such sound.
The first description of my problem had been a small nodule on my thyroid, which, upon further investigation, turned out to be a large tumor that had replaced over half of the thyroid tissue itself, and had ballooned outward from there. Only one tiny part of the left side of my thyroid had survived, which was the part they’d left in place when they’d surgically removed the tumor.
The ENT pushed his office chair back a few feet, the wheels ascending to the octaves my voice could no longer reach, his face coming into focus. He apologized again for having initially said he didn’t think there was cancer in the tumor, but that now that he’d biopsied it and had found cancer, I really did have to have another surgery to remove the thyroid piece they’d left in place, followed by a radioactive iodine treatment that would kill any remaining thyroid/cancer cells.
Scribbling sounds rose from Gaaby’s lap.
To answer the first question I’m always asked - no, a person can’t live without a thyroid. It’s not a left over from pre-historic days, like the appendix. It’s a vital organ. Without the hormone the thyroid produces, which controls (amongst other things) a person’s metabolism - the speed at which everything in one’s entire body, including the brain, functions - all the organs slowly shut down one by one. And the person dies. This is why, when a person has their thyroid removed, they have to take thyroid hormone replacement medication for the rest of his/her life.
So the heart keeps beating. The lungs keep breathing. And so forth.
I knew that giving the doctors my entire thyroid meant giving them absolute control over my physical life. What I didn’t know was that it would murder my writing.
I’ve been reading about what it’s like to live without a thyroid, I said to the ENT at one point, and it sounds like it can take a long time to get the medication properly adjusted. I’ve already gained fifteen pounds I can’t seem to lose.
This was why I’d gone to the doctor in the first place. Because, for me, being strong and healthy isn’t so much about looking good (not that there’s not a little of that). It’s more about being able to handle my son with non-verbal Autism.
Cale is ten years old now. He’s getting so big that his strength nearly matches my own. I have to be an adequate stopping force when he attacks his sister or brother, or some little kid at the grocery store. I have to be able to pry his increasingly muscular fingers from faces before his fingernails draw blood. So that no one ever decides I can’t handle him.
So that no ever decides he should be removed from our home.
You can’t take the rest of my thyroid, I said to the ENT, his bright blue eyes blurring through my tears. I’ll grow weak.
No, he said, rolling his chair back to me and patting my knee. This is the twenty first century. We have excellent doctors, and excellent medications. We will not let that happen to you.
We will not let that happen to you.
That’s what he said.
I glanced over at Gaaby, who was skimming her notebook now - probably making sure we had the next surgery date right, whether or not I should eat first that day, and so on.
Once I was all healed up from the surgeries and such, the first thing I noticed was that the strength training workouts I do - workouts that I’ve done for the last ten years, workouts that have always been an absolute breeze for me - were so hard to do that I couldn’t stick to them. I’d do them every day for about three weeks - during which they somehow never got the slightest bit easier - only to hop on the scale and find that not only hadn’t I lost any weight, I’d gained a couple more pounds. So I’d give up - it was just too hard - for about three weeks, and then start the whole process all over again. With the exact same results.
I did this over and over and over again, for a year.
One day, I woke up. I threw away all of my clothes, bought a pack of cigarettes and a pair of sweat pants, and vowed to never, ever exercise again.
I’ve had other symptoms of not having enough thyroid hormone in my body too - freezing my butt off all of last summer (yes, I said in the summer), and pulling my hands away from my head in the shower to find webs of hair holding my fingers together.
Now I can’t pry my son’s fingers from skin, in spite of pulling as hard as I can. And he pushes right through me when he attacks someone. Yet even this isn’t the worst of it.
The worst part is that the water turned into concrete. I didn’t know that it could do that.
Making breakfast for my kids in the mornings has been like swimming through concrete. Getting the kids off to school has been like swimming through concrete. Taking the kids to their endless doctors’ appointments and therapy appointments (Shane’s been coming with me to help contain Cale during his tantrums a lot), concrete. Making dinner (we’ve been eating from McDonalds a lot), concrete.
Trying to talk in a way that makes sense to other people…
I walk into a room and forget why I went into that room…
I haven’t been able to write at all. I’ve been able to perseverate on (and mutilate) stuff I wrote a year ago. But until quite recently, I haven’t been able to access any kind of a flow of words. I stopped meeting with the women from my writing workshop last summer, and after that began arranging my life in such a way as to minimize ever having to leave my house.
I haven’t been feeling bad exactly. I just haven’t been feeling anything at all.
When you’re a spastic and overdramatic thinker like myself, it’s nice to be a zombie for awhile. It’s peaceful. There is no up. No down. No joy or sorrow or happiness or fear. But after days and weeks and months and months and months of it - with no end in sight - I really did start to wonder what the point of living even is.
Every six weeks, for just over a year, I had my blood drawn. And every six weeks they increased the dose of my medication. Every now and then I felt, for a few days, like the concrete was softening, only to have it solidify again.
And yes, I complained endlessly to my endocrinologist.
Finally, my first endocrinologist - the one the lying ENT referred me to - quit or moved or something. So I was assigned to another one, who couldn’t figure out why the first one had been screwing around with all of these 3 mcg increases all year. My new doctor started raising my dosage 15mcg every time I had my blood drawn (it’s happened twice now), and has finally gotten my levels up into the range she wants them in.
So it has been over just the past few weeks - although I am still holding my breath - that the swimming has started to move my body. The first emotion I experienced - I saw it’s little red eyes just as they peaked around the corner of the nothingness - was rage.
It’s funny. I’d never been so happy to see an emotion - any emotion - before. And it definitely wasn’t one of it’s muted counterparts - self-pity or resentment or anger. It was pure, unadulterated RAGE.
This one needs a thick set of reigns I’m afraid. Because it will, in one way or another, be galloping on through. The worst thing to do with it, I think, is to try to ignore it, because then it takes off sideways, coming out in small, seemingly unrelated things.
The toast popped up in the slots, each slice blackened along the curves at the top, fading to white through the center, and soft to the touch along the squared off bottom. I flipped them over and pushed the level back down.
The timer kept ticking.
Our toaster isn’t one of those Chinese made gadgets that spreads an even sheen of golden brown over anything inserted for approximately one year before a circuit blows, or a cord frays, or the entire device just quits for no apparent reason at all, rendering it one more chunk for a landfill to chew on for the next three hundred years. Instead it’s an English made silver box my husband bought used, online, just after we were married. The thing’s been toasting one edge or another, with unrelenting persistence, for twenty years now.
The toast popped up. Now charcoal along the curves. I hung each slice over the sink and tried to scratch the burn off with a butter knife. Then I lifted the lid from the butter container and… someone had used all the butter and hadn’t replaced it with a stick from the fridge.
I managed to suppress a sigh.
I lined the toast slices up on the countertop - a couple of which landed in a tiny puddle of liquid, invisible until caught by just the right angle of light - and pulled a stick of butter out of the fridge. Now realizing the toast was soaking something up - dishwater maybe - I grabbed a plate from the shelf and slid the toast onto it, then peeled long flakes of paper off the rock hard butter stick.
Once I finally got the butter into the container, I sliced off a stiff pat and attempted to spread it over the now cold, soggy bottomed, black toast, which of course tore a hole through the center.
I stopped. Took a deep breath. And made a conscious decision not to say anything. Yet at the exact same time, these were the words making their way out of my mouth…
“How hard is it to replace the f#*king butter?”
I said it to my husband, Shane, who works 50+ hours per week yet still finds it in his heart to help me - a stay at home mom - get the kids off to school in the mornings.
He didn’t respond.
Once I finally got toast in front of my kids - half black slices with microwave dissolved grease poured over the tops, I got an entire box of butter out of the fridge, peeled the paper off all four sticks, and put them into a large tupperware container that I left on the counter.
Shane walked by the container later, put his hand on it, and laughed out loud. Because this means I’m finally coming back to him.
When I catch something like this, I write it down. I got mad about the butter. Then I ask myself why three times. It’s a silly little trick. But it usually works.
Why did I get mad about the butter? Because when people see that the butter is gone, they should replace it. Duh.
This kind of answer is always a little red flag. A pointer. An indicator. That little thingy that pops up from the turkey, signaling that it’s time to do something different in the situation. I mean, sure, I can spin in circles blaming others for my feelings for as long as I want, but this is never where the real answers are. If I’m really honest with myself about the first why, I know that this isn’t actually about butter. So I try again to answer the question.
I’m just mad in general.
Because the doctor lied to me (fear - doctors are human beings; my life is in the hands of human beings). I’m weak now (fear - that I won’t be able to take care of my son). And I can’t even write anymore.
What if I can never write again? What if it’s gone permanently? How will I process it all when my son has to go and live somewhere where he’ll be probably cared for?
Fear always accompanies rage. It’s just not always immediately apparent because it hides. It’s quiet. Insidious. Weaving it’s little threads throughout my life while I’m distracted by the little red eyes, convincing myself they wouldn’t be there if people only replaced the butter.
So I’m not really mad. I’m scared. Why am I scared?
Because I had cancer.
It took something from me that I’ll never be able to get back.
It isn’t lost on me that Gaaby wrote a screenplay this past year - the one now getting some attention in L.A. - in which the best friend with the sweet face and lots of blonde hair, has cancer. I think there’s even a scene in a doctor’s office with a pen and a notebook.
Maybe it’s just time for me to process it all too.
My book is, for the moment, shelved. A neglected baby now probably dead in it’s crib. So I’ve been told by people who’s opinions matter to me very much, to start writing to you again. To just start writing in this safe, old blog of mine, even if it’s shit writing. Even if I find the Finding Dory metaphor - just keep swimming - a tad nauseating.
Because it’s the only way to the surface.