I Survived Thyroid Cancer—but Dealing With the Side Effects Has Been Harder Than I Ever Imagined
Five years ago, I thought I was suffering from springtime allergies. My nose felt stuffy, and I was experiencing dull ear pain and pressure inside my ear canal—which I attributed to the fact that I was blowing my nose so much.
I also had a raspy voice, which I assumed was the result of postnasal drip. At the time, I was a busy single mom of a 6-year-old boy who worked in publishing and as an author. So I resorted to my usual OTC allergy meds, armed myself with tissues, and waited for my symptoms to pass.
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But a month later, I was still using nasal spray 24-7. Thankfully my yearly checkup with my internist was rounding the corner. At my appointment, my doctor examined my neck with her cold hands and asked me how long my voice had sounded so scratchy. "I dunno, maybe a month?" I replied.
"What about this lump?" she continued. "How long has this been there?" She pressed her hand into my neck, and I gulped; the area felt tender to her touch. She then guided my fingers to the right side of my neck. What I touched made my eyes widen and my brow crinkle up in confusion: It felt like a grape was in my neck.
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A surprising, scary diagnosis
After that day, things happened at warp speed. My seasonal allergy symptoms and raspy voice turned out to be subtle signs that a mass was pressing against my trachea. A soft tissue neck ultrasound and fine needle biopsy soon revealed that I had a four-centimeter tumor covering the entire right lobe of my thyroid gland. It turned out to be a type of thyroid cancer called follicular variant of papillary carcinoma.
I never gave much thought to my thyroid. But amid all the testing and my cancer diagnosis, I learned just how important it is. This butterfly-shaped gland produces thyroid hormone (TH), which regulates just about every function in the body, such as metabolism, heartbeat, temperature, mood, and other important processes. It reaches out to nearly every cell in the body.
"The most common type of thyroid cancer is papillary carcinoma," says thyroid cancer specialist Eric Whitman, MD, medical director of Atlantic Health Cancer Care in Morristown, New Jersey. "Follicular variant is a subtype. Papillary and follicular thyroid cancers account for more than 90% of all thyroid cancers. They tend to grow very slowly." While follicular thyroid cancers usually do not spread to the lymph nodes, like many other cancers do, they can move into other body areas, such as the lungs or bones.
Though it was unclear how I, a young mom who prided herself on eating well and staying fit, developed thyroid cancer, I discovered that it disproportionately affects women in general—occurring three times more often in females than males, according to the American Cancer Society. Why there's a gender disparity isn't exactly understood, nor is it known why when men are diagnosed with thyroid cancer, it's usually at a more advanced stage.
What did all this mean for me? My doctors told me I needed two surgeries to remove the tumor and right lobe, then another surgery to remove the left lobe a month later, leaving me without a thyroid. It felt like my life was completely out of control. My son, Jack, would be starting first grade in the fall, and I was dating a new guy, who had no idea about my diagnosis. Luckily my dad, mom, and two brothers jumped in like superheroes to help.
Waking up without a thyroid
After my second surgery at the Carol G. Simon Cancer Center in Morristown, my thyroid was gone, and I was put on a very high dose of Synthroid. The drug is "thyroid replacement hormone," says Dr. Whitman. It does two things: It recreates the function of a thyroid and suppresses thyroid-stimulating hormone (TSH), so cancer cells are less likely to develop.
It's just a tiny blue pill, but this synthetic hormone was no picnic. My TSH levels drastically changed, and that meant all the body processes that the thyroid usually controls were out of whack. My body temperature was always shifting; I felt hot when it wasn't hot out and chilly when it wasn't cold. I had anxiety and felt very down, very blue. I was constantly drained.
Even though my diet did not change, I started to gain weight, and my fatigue made it difficult to exercise. I toughed it out and prepped for the next phase of treatment: radioactive iodine treatment (RAI) in pill form. That meant being quarantined in my apartment for four days so I couldn’t contaminate Jack and my dog, Lucy. For the first 24 hours, my eyes, neck, and head hurt—and I dry-heaved. I couldn't eat for at least 48 hours, so I stuck to ice chips, water, and diet ginger ale.
Going through treatment alone was not so bad. I am kind of a loner and a definite doer; I attribute this to the superpowers I acquired as Jack's single mom. I felt empowered by the process, and I got to watch a lot of Netflix in peace. When my son and pup came bounding through the door with flowers and balloons after the quarantine was over, I felt complete.
After radiation was over, the final step in my treatment involved getting a full-body scan to see if the radiation worked. It did. Like a little Pac-Man, it ate up all the remaining cancer cells in my neck and a small spot on my chest. That small spot on my chest freaked me out, but at least it was gone.
Side effects start to hit hard
Being done with surgery and radiation was the strangest feeling, like when someone dies and you're so busy with the arrangements and guests and food....and then the next day, you're alone. That's how I felt. Sometimes, I also felt like I had a big secret.
I did quickly realize that I was now part of the Big C club, and that meant I would require a lifetime of medication and tests. Every 3 to 6 months I had to see my doctors for blood work, and I needed an ultrasound twice a year. It was a dizzying experience juggling those responsibilities, especially because I was also back to taking care of Jack, running our home, and working as an editor. I tried to stay upbeat and positive.
As vain as it sounds, gaining weight was the toughest side effect of my journey. I had always been small-boned and fit. I prided myself on eating clean and exercising. As a mother, I wanted to be in shape, racing Jack around the track and hiking up hills with him and Lucy. And yes, as a single woman, I wanted to look a certain way—not skinny, but the way I did before cancer. Instead, I found myself pathetically crying in my closet in a pile of size 2 jeans that no longer fit.
Making healthy changes
Summer 2018 was the four-year anniversary of my diagnosis. In July, I found out that there were no tumor markers in my blood, and if all continues to go well, I'll be considered officially cured this year. I did a happy dance when I got my latest test results. I also decided to make some changes so the physical and mental side effects of not having a thyroid would be easier to handle.
Because my spirits were iffy, I joined a cancer survivor support group. It turned out to be the best thing I did since getting sick. I met people who had thyroid cancer and other types; I learned first-hand that we are all going through the same medication side effects, like bloating and mood swings. After the first meeting, I made some notes in my iPhone and stuck to them like they were the holy grail.
I also committed to exercising at a challenging pace for an hour every single day. I joined a barre class and made new friends. Jack plays soccer, so I've started doing regular soccer drills with him. We also play tennis and always take the stairs in our apartment complex. Jack has been a terrific cheerleader, and Lucy is an excellent motivator too as my hiking and walking buddy.
Meal planning has helped me eat healthier and feel better too. Every Sunday night, I cook a huge batch of grilled chicken and quinoa salad with peppers, kale, and a sprinkle of feta. I also stocked my fridge with natural, sugar-free yogurt, tuna packets, tons of green produce, and a pitcher of lemon water. My amazing Italian dad who loves to cook always stops over with healthy meals. Not having to think about what I was going to eat made it easier to stay on track.
Almost out of the woods
Over the past months, I lost 16 pounds, gained back my confidence, and started feeling like a new version of myself. I'm pretty sure I'll never be a size 2 or wear a skimpy bikini—and I don't care, because I'm betting on my cancer not reoccurring.
Something terrible happened to me out of the blue, but it will not define me. That scar on my neck? It’s barely visible anymore, and I like it. It’s a battle scar that reminds me of what I conquered. I've learned some things about cancer and its aftermath, however, and here’s what I want Health readers to know:
1. Stop what you're doing and #checkyourneck. Feel something? Say something, fast. Thyroid cancer strikes three women for every one guy, and it’s much more curable if you catch it early.
2. Newly diagnosed with thyroid cancer? No one gets to minimize your experience or feelings. The big C is a big deal. This is your journey.
3. If you're in thyroid cancer remission and having a tough time, you're not alone. The most important thing I did for myself this year was shift my thinking. I stopped being mad. I stopped feeling sorry for myself. I acted. You can act, too.
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