thyroid cancer | Rachel Pieh Jones

My Thyroid Cancer, Emotions and the Photo

I don’t want to gross anyone out by a sudden pop-up on Instagram or Facebook of my insides but lots of people asked to see the tumor photo. So I’m posting it here.

Talk about vulnerability.

Showing off my innards.

That long string is not a hair, as my husband tried to tease me in my post-surgery drug-induced delirium. Its a stitch. I promise.

I have a wide range of emotions when I look at the picture.

Awe, the body really is fearfully and wonderfully made.

Humbled by human fragility.

Glad, that Dr. D took me seriously and snapped the photo and also that he and my other docs took the lump seriously and are good doctors.

Sad, that the good thyroid is gone.

Mad, to be honest, because we were doing just fine, my thyroid and I and now my body is out of whack, at least for a while.

Relieved, surprised (look the size of that thing!), and still kinda in shock that this is my body. My cancer body.

Thankful for faith. Some people say those of us with faith are weak and leaning on crutches. I say, “Amen to that.” Life hurts, loving people is scary. I don’t know what I would do if I didn’t have a refuge to run to.

Thankful for community. For all the doctors and nurses who love me and who are begging to see the photo (you guys are hilarious). For all who have sent messages or cancer sucks mugs or soft blankets and socks and treats and flowers and lotion and tea and prayers and more.

Dizzy, oh wait no, that’s just the drugs talking. Because yeah, I’m on a lot of drugs now, so sure the emotions could be coming from one of the 10-16 pills a day I’m taking.

Amazing, how one photo can call up all that. Anyway.

Here’s the first of many rounds of daily pills (aka actual cancer candy) and then below is the thyroid.

Do not scroll down if you don’t want to see.

Not too hard to see which side is messed up, huh?

By Rachel Pieh Jones|November 8th, 2018|Categories: cancer|Tags: cancer, thyroid, thyroid cancer, thyroidectomy, tumor|12 Comments

A Goodbye Letter to My Thyroid

Dear Thyroid,

This is not your fault.

You have done nothing wrong. You work just fine and you’ve worked just fine for forty years now.

You keep me from being too cold or too hot, you keep my hair from falling out and my body from shrinking or growing abnormally. You help me maintain emotional stability (my husband might question your total efficacy on this point) and keep my bones from crumbling. You keep my heart rate steady and my period regular. You kept me from being too tired or not tired enough and you keep my hands from trembling and my eyelids from twitching. You help my memory, regulate my fertility (thanks for the three delightful children), and keep my muscles from becoming overly stiff. Oh, and who can forget, thank you for your contribution to regular bowel movements.

Basically, you’ve kept my body at a reasonably functional level and I barely knew you existed.

And now? Now, poor dear perfect thyroid, we must part ways. I don’t blame you, this isn’t your fault. Some kind of alien creature has taken up residence in my body and it decided you looked like the best home around. Doctor D has to remove the alien before it spreads around and in that process, he will have to remove you, too.

I’m sorry.

I will bounce back. I’ll be on the rebound, as they say, and will turn to replacement thyroid hormones. I hope you don’t feel bad about being so easily replaced, just know I’d rather have you. But I can’t.

I wish we could have stayed together for all time. Alas. I will go on living (barring an unforeseen problem during surgery, I guess there are no guarantees, right?) and you will go to the pathology lab for further testing.

I did ask Doctor D if I could keep you, or have you back later.

He said no. Some blah-blah about pathology tests and hazardous waste.

I asked him to take a picture of you and he agreed, so, there’s that.

It is weird to think of part of my body being removed, being separated from me.

I mean, I’ve had three humans inside me and they all came out, but they weren’t me. They were just inside me. You, thyroid, are part of me. And now you have to die. Maybe I’m being overly dramatic, but that just feels weird and not a good weird.

So anyway, thank you and I’m sorry.

Here’s to one more night together and then, tomorrow, its snip-snip and au revoir, salama, nabad gelyo, go in peace.

By Rachel Pieh Jones|November 5th, 2018|Categories: cancer|Tags: goodbye, letter, thyroid cancer|8 Comments

Ode to Good Cancer

Alright, look. Yes, I’m writing this sarcastically. And also not totally sarcastically. Even my doctor said that he has learned to not ever call any cancer a “good” cancer. Yes, thyroid cancer has a standard of treatment and is highly curable and has a very good outcome rate. But you know what? I don’t want to have cancer. I have felt my life flip out and upside down and inside out and while I will likely be “fine” eventually, and recovered or whatever, there are lifelong implications of this that are not fun, easy, pleasant, or good. Still, I really do that its okay to ask me about it, I just had fun writing this little ditty and wanted to share.

Ode to Good Cancer

I’ve got the good cancer, that’s what they say

All my doc has to do is cut it away

Along with other necessary and perfectly functional body parts

Leaving me with a scar to rival the contemporary arts.

Oh and then there’s the hormone replacement, a daily pill

And finding the right dose could take weeks or months or years, still

It’s the good cancer. Except just about the time post-surgery that I’ll be feeling fine

there’s that minor dose of radioactive iodine.

The doctor will wear a mask and nuclear suit

But I will put the pill in my mouth, no dispute.

Then I’ll be all alone, a danger to society, for several days

My kidney, liver, salivary glands, taste buds, teeth, and more may start to decay.

Once out of isolation, I’m still not free

My body is full of radioactivity

Healthy cells might now be dying, making room for fresh disease

The only way to be sure, for the foreseeable future, is with regular blood tests and more biopsies.

And also? My family lives in Africa, in Djibouti, where healthcare barely exists

Which means my husband was on the other side of the planet while my neck bulged with carcinoma-filled cysts.

Sometimes I feel angry, sometimes I feel scared. Sometimes I feel fine, sad, deep, thankful, tired, happy, sick.

Lucky me! Lucky me! Good cancer chose me for its next pick.

You too? You have a good cancer? But…you’ve got all your hair!

Sure, you lack the energy to walk up the stairs

And your body temperature, weight, skin, emotional balance, sex drive have changed

And you toss and turn all night with dreams that make you feel deranged

You will have blood tests and scans and pills and new scares and strange aches for the rest of your life

And you fear you’re failing at work and at being a good friend, or mother, or wife.

No, medical bills aren’t what we’ve saved money for, me with twins in college at the time of first biopsy.

So it is hard to hear, “its a good cancer,” which might really mean, “Sure is good it didn’t happen to me!”

When we subject our bodies to poisonous “cures”

The line between good and bad radically blurs.

But seriously, non-cancer person, feel free to inquire about how I’m doing, I really don’t mind.

Just beware I might ask, “Would you like some of this cancer? Don’t worry, its the good kind!”

After I wrote this, I found other ‘odes’ about cancer. Here are a couple:

The Good Cancer (ode to Hodgkins Lymphoma)

Ode to fellow cancer warriors and survivors (this one is not so snarky)

Ode to My Hair (truth be told, two of my first questions to my doctor were: Am I going to lose my hair? and, How will this affect my weight? I know, so vain. But also? Honest. Cancer seems to bring out the honest.)

A poem about breast cancer

Cancer Poems

By Rachel Pieh Jones|October 25th, 2018|Categories: cancer|Tags: cancer, good cancer, ode to cancer, thyroid cancer|4 Comments

How to Find Thyroid Cancer

I wrote in the Cancer Candy post that I wouldn’t write about cancer all the time. But I heard from a lot of folks that I should write about it, that you want to come with me on this journey? adventure? fight? thingy?

Thank you.

For bearing the burden with me, for caring and speaking and reaching out. Thank you for your messages and empathy and understanding. Thank you for challenging me to write about it, which means I have to think about it, which means I have to face it.

One of the most common questions people have asked is how I found out about the thyroid cancer.

Did I have symptoms?

Did I pursue a diagnosis?

Did I suspect something was just…off?

Nope. Nope. And nope.

This came as a total shocker.

In April, I turned 40. 40 is when women are told we should start getting regular mammograms. I’m a rule-follower and health is a high value for me and I knew I would be spending more time in Minnesota this fall as I helped our twins transition to university.

So, being an obedient nerd with time on my hands, I made an appointment with my regular Ob-Gyn. (and from now on I will be forever telling everyone I care about, which means YOU, don’t skip the doctor appointments. Just don’t. I care about you. Other people care about you. GO.)

“Its a good time to go in,” I said to my husband, “because I’m here longer, so I’ll have time to schedule the mammogram.” (There is no possible way I would do any of this kind of healthcare in Djibouti. No way.) I was thinking about unwanted lumps down there and paid no attention to the beast on my neck. I guess I don’t spend much time staring at my neck in the mirror.

At the exam, the doctor noticed that my thyroid felt, “full.” She scheduled a blood test of my thyroid levels and an ultrasound.

I met with a thyroid specialist. He said these lumps are mostly benign, though there was a 5-10% chance of it being cancer. But since thyroid cancer tends to be genetic and there is not one single drop of cancer in my family history, my chances were even smaller. (side note, there are no twins in my family history either. Apparently, in my husband’s words, I am exceptional in so many ways).

Thyroid levels came back normal, ultrasound revealed a massive nodule on my thyroid. 3.5 cm, a little wider and thicker than my thumb, and about that long.

In other words, I have a perfectly functioning thyroid with a half-Twinkie-sized alien beast attached to it.

Thyroid doc ordered a biopsy, an FNA, fine needle aspiration.

Which hurt.

It hurt.

Doctor said it wouldn’t hurt and I can’t say I cried or anything, but still. Of course they numbed up my neck and then, with three medical people in the room, jabbed needles into me. I can’t remember how many times, but in and out, in and out, until the doctor had sucked out enough of the tissue to provide a good sample for pathology testing.

My doctor is funny and was cracking jokes while he jabbed me. I tried not to respond. I kept thinking, “That’s my neck. There are important things in there. Like vocal chords and parathyroid glands and jugular veins.”

I made my own joke as I left the procedure room and all three staff laughed. The doctor said, “Well played.”

I walked out thinking, “I just had needles all up in my neck. There’s a chance I have cancer. But gosh darn it all, I’m funny.”

This helped.

Then, the ache set in. It wasn’t pain, so I guess maybe writing that it hurt is an exaggeration. But I didn’t really feel like a “fighter” that day, the annoying term so often used to categorize cancer patients. I felt sad and scared and a little angry and channeled that into my neck.

Plus, I couldn’t drink from a cup for almost a week. At least not all the way. I had to lean my entire body back without tipping my head, like that girl in Sixteen Candles who has the neck brace and can’t drink out of the water fountain? You know who I mean.

I had to, like, quick-tip the water down my throat so that it partly splashed onto my face and shirt. Or, with coffee, since I didn’t want that splashed on my face, I sort of slurp-sucked it down.

That’s super awesome.

I sort of grimaced when I swallowed and it felt like there was a marble sitting in my throat.

I couldn’t do sit-ups, which I usually do while watching a show at the end of the day.

I woke up every time I rolled over at night because when I strained my neck, it hurt, like someone was punching me in the throat.

For, like, a week.

I took a couple of Ibuprofen.

What a wimp.

And I just had a feeling…

I’ve had those feelings before. Another major time I had it was when I was pregnant with those nowhere-in-my-family-history twins. I told people I was having twins, I told my husband, my best friends, my doctor. They all said no way.

We all know who was right on that feeling.

It was like that. Just a hunch, a gut reaction, a bracing of the spirit.

Still, I had to wait over a week for the results.

And when the doctor himself calls you up (interrupting the Kavanaugh hearings while I drove home from lunch with my son at UW-Eau Claire, I might add), it is never good news…

By Rachel Pieh Jones|October 22nd, 2018|Categories: cancer|Tags: biopsy, doctor, thyroid, thyroid cancer, tumor|5 Comments

Cancer Candy

You know how when it rains, it pours?

My twins graduated and moved to two universities in the United States of America.

My husband remained in Djibouti to run our start-up, the International School of Djibouti.

My singleton, the youngest, returned to Kenya for school.

I stayed in MN to be close by while the older two transition to this country and new phase of life.

We recently made some organizational readjustments that were positive and complicated and also, to be honest, difficult, as most changes are.

Parenting adult kids is really hard, harder than I thought.

I turned in my book manuscript this week.

I told you recently that I started seeing a counselor for “stuff.”

And then, I recently bought this:

Why is a pile of sugary goodness on this list of challenges and changes?

Because I labeled it:

#cancercandy

Because I bought it a few hours after being diagnosed with thyroid cancer.

Yeah.

Me, for whom health is a high value. Who takes doctor appointments and nutrition seriously, who loves to run because it makes me feel strong. Who was strict about natural family planning as birth control because I didn’t want to take hormones or pills. That person has cancer and will go on hormone therapy for the rest of her life.

I talked to my mother-in-law a few hours after the doctor’s phone call. She and my father-in-law are nurses, he was a cancer nurse. I asked what I needed to think about. She said,

“Today, you need to think: Shit. I have cancer. Tomorrow, you can ask questions.”

#bestmotherinlawadviceever

I took her advice literally and headed straight out to the grocery store for candy and ice cream.

What’s next?

A second biopsy on a suspicious lymph node. (*biopsy came back clean)

Then, surgery, removal of my whole thyroid and the monstrously large lump attached to it. We are trying to come up with a nickname for the beast but I’m revolted by all the family’s suggestions so far.

Then?

I don’t know yet.

I’ll try to keep writing. I’ll try not to write all the time about cancer, Lord knows there’s enough of that out there for you to read elsewhere. But I might because, Lord knows that’s what’s on my mind (and in my neck) these days.

I plan on being just fine.

But, my hope is not in odds or doctors or my own body.

I don’t rely on human plans, not even my own.

This is what some people call a “good” cancer, which means it is fairly treatable. I gotta say, I’m not ready to claim that yet. While I am thankful for many things (that there is treatment, that I’m here in the US for this time period, that I don’t feel sick at this point), it is still cancer. And cancer sucks. Cancer combined with an international life super sucks. The treatment will be hard, the disruption to our life will be hard, the future slightly foggy.

May I suggest a more appropriate response, if someone (like me) tells you they have thyroid cancer? Don’t say, “Well, lucky you, you got the good one!” Just say, “Shit. You have cancer. I’m so sorry.” Feel free to modify to “shoot” or “gosh darn” or whatever floats your boat.

I’ll let you know how all this pans out in the coming months.