Who needs a thyroid anyways? Me. I need one.

The year was 2003. I was a 22 year old hairstylist. No health problems. Just a normal young adult who struggled with my weight but nothing else was wrong with me. That summer I got pretty sick with sore throats and fevers that lasted on and off for about a month. I saw the doctors several times. No diagnosis for my summer bug. Until the last visit she felt what she presumed was a cyst on my thyroid. I remember her saying to me “I wouldn’t worry about thyroid cancer. I’m pretty sure it’s just a cyst. But let’s send you to Boston to get it checked out.”

Ok. Hold the phone. What’s a cyst? And what the heck is a thyroid? And whyyyyyyy did you just drop the “C word” to me?! That’s what was going through my mind. I went home dazed and confused. And still sick.

These were the days before Google. Before social media. Before I knew ANYTHING about thyroid cancer. I literally didn’t even know what a thyroid was or where it was in my body other than where the peculiar bump was. I was terrified. The not knowing. Not having anyone to talk to. My favorite grandmother lost her life to cancer. That’s about all I knew of cancer. I hated it already.

In the following weeks I was matched up with a ENT doctor in Boston at Beth Israel hospital. He also didn’t think it was cancer. But he sent me for an ultrasound so be sure. When I arrived for the ultrasound they had me sign a waver for my biopsy. Wait. What? No one told me I was having a biopsy?!?! Insert panic.

The biopsy consisted of laying on a table with my head back and neck extended all the way. They had to insert a spinal needle (I don’t know why it was called a spinal needle. But that’s what they said.) into my neck and jab it around to collect samples. They did this FIVE times. No numbing. Just jabbing in my most sensitive area. I wasn’t allowed to breathe. The pain was insane. I looked over at my mom and realized I was crying actual tears. She swallowed her own tears and asked what she could do for me and I sobbed “make them stop!”. If this is scaring you reading this please know that now they numb you and it’s no longer an awful procedure I hear. But for me it was traumatic. After the appointment I had to be wheeled out in a wheelchair because it messed me up so bad. I didn’t go to work the next day. I felt awful. Violated. Scared.

The biopsy results came back…. Inconclusive. My dr said he wanted to remove half of my thyroid and send it away to be tested. I was told if it was cancer I’d return in a few weeks to have the other half removed as well. Why take only half and not all of it at once I thought? Because your thyroid is insanely important and vital. It’s not good to lose it. Half a thyroid is better than none at all. But I was horrified at having to have surgery once. Never mind a potential second time!! I named my tumor “Phoebe” (because I’m a huge Friends fan!) to make it seem less scary.

We scheduled my first surgery for September 4th. My mom and my boyfriend came to the hospital with me. It was supposed to be a quick surgery. A couple hours at most. When I finally woke up I found tubes sticking out of my neck I was unaware of. That was sketchy. Everything hurt. I couldn’t talk too well. But I asked how the surgery went. Then I was told it turned into a 7+ hour surgery. They confirmed that not only was it cancer but it had spread very quickly to 14 lymph nodes in my upper chest. They removed everything. Or so they thought.

The days and weeks to follow were a blur. Painful. The recovery was hard. Not what life for a 22 year old should look like at all. Soon after surgery I was scheduled for radioactive iodine treatments (RAI).

To prepare for this treatment I had to stop taking my thyroid replacement medicine. I went on a low iodine diet (which is literally the saddest and most bland diet ever- especially if you’re a vegetarian like I was) for 6 weeks. It. Was. Awful. My body just shut down. Without thyroid and or hormone replacements your body just crashes. I was so cold. I would have layers upon layers on with heavy blankets and sit by the fire and I’d still be cold. I barely ate anything and I gained 20 lbs. My brain slowed so much that I slurred when I spoke. I was told it was possible I have hallucinations but I thankfully did not. But I was miserable.

The day my body was finally prepped and ready for RAI my mom drove me to Boston. We had spoken to the nuclear medicine folks who came up from New Jersey to administer the drugs. They gave us the run down. So many crazy rules. My body was about to become radioactive. So everything was creepy. They rolled my meds in on an iron safe on wheels. Everyone wore hazmat suits. I was given the pills and immediately the room cleared out. They said when I leave the hospital to stay as far from my mom as possible in the car. Then I had to keep a 6 foot distance (this was pre “social distancing”) from everyone for about a week.

On our drive home I heard “100 Years” by Five for Fighting. One of my favorite bands. I remember looking at the city pass by from the back of the family mini van with big tears-wondering why. Why was I doing this and not out shopping with my girlfriends. How was I going to pay my car payments if I couldn’t work? It seemed unfair. The song brought some light and peace to me. In the months to come that song came on the radio EVERY TIME we went to Boston for treatments. It’s now known as “my cancer song”

When I was home from the hospital I set up in my room for a week of waiting. I was sick. I missed my family. They brought my food to my door on a paper plate each day. When I was through I had to throw my plates in a special trash bag. They had to wait 2 weeks to bring it to the town dump because of the radiation. When I used the bathroom I had to flush twice. The plant in my bathroom died that week. I was told to eat sour candies as much as I could that week. Sour candies make your salivary glands work harder which keeps the radiation out of your glands. I hate sour candies to this day. They literally make my glands hurt when I think about them.

When my week was up I gradually returned back to my normal life again little but little. About a year went by and I had to go for my check up to see how the radiation worked. I went for a repeat run of the no meds and low iodine diet for 6 weeks again. Then I went up to Boston for the test. My mom and I had plans that night to celebrate with my best friend. We were going to order pizza (we assumed I’d be allowed iodine after the test) and have a Friends marathon. I was so excited…..

And then the drs came in. The looks they had were not good. They told me the cancer wasn’t gone. It was still there. And I needed to return right away for another round of RAI. I was devastated. And scared. It came back. How? They told me thyroid cancer is “the best kind of cancer to have” and one that goes and is gone. No reoccurrences or anything like that. But there it was. Phoebe was back. And I was back in Boston for more depressing radiation.

The weeks following my radiation I went back to Boston for an ultrasound. The dr told me he saw a tumor still present. And in addition to that I now had a tumor on my parotid gland as well. It was benign. But still needed to be removed. So I was scheduled for a double surgery soon after. Very soon. Like pack your bags and get ready soon. My parents asked everyone they knew to pray for me. I was buzzing with light and love. My dad had a friend from his days in the hippie commune (she actually married my parents also) who was a holistic healer that traveled the world doing seminars on healing. She happened to be out in western mass that weekend so my dad and I took a road trip. We went out to meet her and I sat in on her seminars. And then she met with me one on one that evening. It was almost like she hypnotized me. She asked me questions and I heard myself answer with answers I didn’t know I felt. It was bizarre. But in a good way.

I went back to Boston for my double surgery shortly after. The doctor came out to tell my mom that there was no cancer. Nothing. They couldn’t find anything but scar tissue. I was healed.

My life following has been a roller coaster. I’ve experienced other health problems in the years to come (another story for another time). Since then I’ve developed anxiety. I’ve struggled with my weight. My eye sight changed almost immediately. My hair changed. I get tired more easily. I’m most always cold. I get moody. Most things I’ve adapted to and don’t think about anymore. My dosage of medication has changed every few months this whole time. There was a time when I was having repeat miscarriages and my doctors questioned if I’d be able to have a full term pregnancy after radiation. But I was clearly blessed 5 times over. For that I’m eternally grateful.

For years September 4th would roll around and cause me so much angst and emotion. It was a big deal for me. I call it “my cancer day”. It’s the day I was diagnosed. But also the day it was removed from my body. It scarred me physically. But emotionally as well. It was a pivotal time in my life. It made me question so much. It changed how I view things. Both good and bad. I have some ptsd issues I’m working through that began with this journey. I’ve also learned to let the little things go. And to find joy in the small things. Cliché I know. But it’s so true. It aged and matured me. I went into it as a kid and came out the other side as a woman with a strong head on my shoulders.

About 6 years later I was able to see Five for Fighting in concert with my husband. We got FRONT ROW SEATS!!! The show was amazing. The last song he played was 100 Years I swayed to the music with my husband’s loving arms around me with tears streaming down my face. Life had gone on and I was still living in it. It moved me so much. After the show I was actually able to meet John. I shared with him that his song had gotten me through a dark time in my life. He actually shed a small tear and hugged me. It was such a special moment in my journey.

So here I sit. 18 years to the day later. No more cancer. I’m a survivor. Not just of cancer. But everything life has thrown at me since. When I was laying in my hospital bed I said to my dad “Dad, I feel like having cancer will be one of the best things that’s going to happen to me”. Weird. I know. But I was right. It changed my path I was on. It changed how I handle situations. And if I’d not gone down that path I would not have met my sweet husband. And I would not have 5 beautiful babies. And I would not be writing this blog post right now. So yes. As morbid as it sounds. Having cancer was one of the best things that happened to me.