Check Your Neck: My Thyroid Cancer Story

Check Your Neck: My Thyroid Cancer Story

• Jun 22, 2018

Two years ago this week, I had surgery to remove my thyroid. I've mentioned past health issues on the blog before, but I've always been vague about it. I process things privately, and I've never been sure how much I wanted to open up to the Internet about personal things. But I realized recently that I wanted to write about it now that I've got some distance. It was a memorable time in my life in its own right, but it also coincided with the birth of my son. My first surgery was when he was six weeks old, and he was fifteen weeks old when I had my second surgery. It's an understatement to say that I never expected this would be my early motherhood experience.

But that's the thing about life: you never know what's coming next. And so, I want to take a second to share my story. You might be a regular blog reader or, if you're anything like I was in the days leading up to my thyroidectomy, maybe you got here from a Google search. Whatever the case, I hope this helps you in some way.

My journey with my thyroid goes all the way back to middle school. Seventeen years ago, I had half of my thyroid removed due to benign nodules on it and never had to take medicine because the remaining half of my thyroid produced enough hormone. I'd revisit the story when people asked about my scar or when filling out patient history paperwork at a doctor's office, but I never really thought about it beyond that.

Then, in March 2016, my mom mentioned that it looked like I had a lump in my neck. I was eight months pregnant, and it was the last thing I wanted to hear. I went back to the Ear, Nose and Throat (ENT) doctor and an ultrasound confirmed a growth on my thyroid. The next step was a needle biopsy, but the doctor wanted to wait until my baby was born. I added a reminder to schedule the appointment to my to do list and then focused on the present.

My son was born soon after, and I was in heaven. But there was this little cloud stealing some of my sunshine. I was so happy holding my son, reveling in the love I already felt for him, but I needed to know what was going on in my neck. So, two weeks after he was born, I went in for the biopsy. The pathology came back inconclusive but suspicious, and the ENT felt the rest of my thyroid needed to be removed as soon as possible. I was three weeks postpartum, hormonal, and emotional. Those early days as a parent are overwhelming no matter what situation you find yourself in. Nothing can truly prepare you, and this was something I'd never anticipated.

In the days leading up to my surgery, I alternated between complete denial and total obsession. I'd put it out of my mind for a while, and then I'd find myself reading thyroidectomy stories online for hours in the middle of the night. HUGE MISTAKE. The Internet is one big horror story. I discovered that very few people write about their surgery experience if it goes well. You only read about the bad ones! I wasn't as worried about the surgery, since I'd been through it before, but having no thyroid terrified me. The inside of my brain was like a broken record!

How long would it take to get my thyroid dosage right? Would I gain weight? Would I ever feel like myself again? What if it was cancer? What if I had to get radioactive iodine therapy and had to be sequestered? Would I be able to breastfeed after surgery? Could my baby come to the hospital? How would I get through a night away from him? 

L: Post Op Surgery #1 | R: Post Op Surgery #2

The day of surgery came, and things went well. There are so many details about it that I think I'll always remember – and so many that I have already forgotten. I remember the kind anesthesiologist who calmed my fears, the nurse that let me hold my baby after surgery (even though it was against the hospital policy), the way I was my most outgoing and chatty self while sitting in a hospital bed.

And I remember the phone call a week later when my doctor told me that I had thyroid cancer.

The next few weeks passed in a blur. I started my thyroid medication, met with my endocrinologist and discussed the next steps, and did my best to focus on my reality instead of all my what ifs. But there was something that I couldn't ignore: I still had a lump in my neck (and it wasn't just swelling from the surgery). The fear, of course, was that the cancer had spread. Testing came back inconclusive, and I needed a second surgery.

The second surgery went well, and I went home from the hospital the next day. When pathology came back, it was confirmed that it had been a thyroglossal duct cyst and no cancer was found in the tissue. It was such a relief! And with that positive result, it seemed as though that chapter of my story was closed. And in many ways, it is.

Here's the thing about thyroid cancer – the most common types are the most curable. It's typically a slow-moving cancer which means it's more likely to stay contained to the thyroid. In many cases, it's completely removed with surgery. And that's what happened with mine. I didn't have to undergo radioactive iodine therapy, and the only ongoing treatment is suppressing my thyroid-stimulating hormone (TSH) levels with my daily medication.

And that's part of the reason I wanted to write this post: to encourage everyone to check your neck. Thyroid cancer doesn't usually present any symptoms, and blood tests generally don't detect it. My TSH levels were totally normal pre-op. Neck examination is the most common way a nodule is discovered. In my case, my mom noticed a lump while talking to me. Here are instructions from ThyCa.org on how to perform your own neck check. (And if you want more info about thyroid cancer, check out the American Cancer Society and ThyCa). Please do it!

How My Scars Look Today

But there's another reason I had this post on my mind, and it goes back to a book I picked up during this time: The Mothers by Brit Bennett. Here's a quote I underlined while I was reading:

“Sickness burrowed deep inside you, and even if you were cured, even if you could be cured, you would never forget how it felt to be betrayed by your own body.”

This has been true for me. One thing I've heard a lot in the wake of my cancer diagnosis is that thyroid cancer is "the best kind of cancer" possible. I know what people mean, and I know why they're saying it. I didn't have to go through painful treatment with lingering side effects. Surgery took care of the problem! I'll have to take medicine daily for the rest of my life and consistently meet with my doctor to look for signs the cancer has returned. Both of those things are, in the scheme of things, minor inconveniences.

And yet, I've grieved over it. I know it could have been so much worse, but it's still painful. In one of the sweetest and most special times of my life, I had so much anxiety and uncertainty. Some of it still hasn't left me. I don't know if I'll ever stop wondering about what's happening inside my body. I think that's why that quote from The Mothers resonated with me and why it's taken me so long to write about what was going on that year. It's hard for me to revisit the fear and the sadness because it's not how I want to remember those first months of my son's life.

In my recent post about how I'm writing my story of motherhood, I talked about my gratitude journal and how I've made a conscious effort to see the beauty and find the good in the each season of my life. For me, keeping a three good things journal – trying to train my brain to be more positive – was what my anxious, overwhelmed self needed most during that season and has continued to be so helpful since then. I don't want to ignore the bad stuff, but I am actively trying not to retain it. I want the good things to be the story I remember!

Last year, I read a book called Lift by Kelly Corrigan. And here's what she wrote to her daughters:

“I heard once that the average person barely knows ten stories from childhood and those are based more on photographs and retellings than memory. So even with all the videos we take, the two boxes of snapshots under my desk, and the 1,276 photos in folders on the computer, you’ll be lucky to end up with a dozen stories. You won’t remember how it started with us, the things that I know about you that you don’t even know about yourselves.”

My son won't remember those months of his life. He'll only know the stories I tell about that time, and he'll know the mom I became because of the lessons I learned that year. So, I'll tell him how we were shocked by his head of hair, how he loved to be held, how he laughed when I made up songs for him and how he was my Very Best Thing when I needed it most. A mama is supposed to take care of her baby but, in so many ways, he took care of me.