This is a written account of the year I had thyroid cancer & what I experienced. It’s here for anyone that has been touched by thyroid cancer. It’s my personal thyca journey. Everyone’s journey is different, but maybe someone will find this helpful.
February, 2013
In the beginning, there was a lump –
I was at work, taking a bathroom break from my stale cubicle. It had a window, so that was a perk. I was just checking out my face in the mirror, noticing the bags under my eyes. Work had been a very stressful place to be and I found myself wishing for a reason to stay home. Then I spotted it, a lump at the base of my throat. Questions started forming in my mind.
What is that?
I immediately went back to my desk and queried Google about lymph node and gland locations. At that time, I couldn’t quite figure out what it might be. I decided to make an appointment with my ENT doctor, since I hadn’t been feeling well anyway. This was something I attributed to stress, but then again there was a lump.
As the days passed until my appointment, I kept feeling of the lump. It was very firm and didn’t move much. I didn’t think about it that much. I’m sure I did more Google searches, but my mind was filled with thoughts of work and where the company was going. Downhill pretty much sums it up.
The day of my appointment when my doctor asked what was going on, I said I had some head congestion and oh yeah, this lump on my neck. She immediately felt of it and said
“That’s your thyroid.”
I just looked at her because I was expecting her to say I had a cold or strep throat or something of that nature. She wanted to know if I could go for an ultrasound that same day.
This seemed serious.
I think I had the ultrasound within the next couple of days. Of course, you have to wait at least a week or more for results. In the meantime, I asked Google. Through my extensive research into the thyroid and all the ailments that might occur, I thought I probably had Hashimoto’s disease. I had most of the symptoms. This is something I told, well, anyone that would listen.
Cancer did cross my mind – I’d had issues before. In 2009 I had a couple suspicious moles removed. They both came back with “bad” cells and one wasn’t within the “margins”. I thought okay, they’re just going to take off another slice. Nope. I had a 4” incision with 13 stitches right on the side of my bum. Not fun. The doctor says I’m lucky because he thought it was melanoma when he first saw it. That’s me, lucky.
The Biopsy
Anyway, back to the lump. After the ultrasound results were in, my doctor said I needed a biopsy because of the size. It was about the size of a golf ball. Imagine having a golf ball stuck in your neck. I did more Google research on this “biopsy” I had to have. Everything pointed to it being a FNA (fine needle aspiration). This sounded like no big deal until the day of my biopsy. I had to have a core biopsy because the in house pathologist could not tell what was happening with a FNA.
Great.
I lay on the padded table with my neck bent up for better access. The doctor numbed the area and made a small incision over the lump because the needle is very large. Using an ultrasound to see where the needle was going, she stabbed me 5 times with the giant needle and plucked out tiny pieces of the lump. This was no easy task since the lump was hard. I tried not to breath or cough or sneeze or have any other disruptive bodily function.
When it was over she showed me the tiny pieces of the lump. They looked like bits of seafood. She covered my stab wound with a band aid and sent me on my way. I called my mother and cried because the whole procedure was much more invasive than I expected. Mind you, I had gone to work at 7, and left to be at my appointment at 9. I went back to work until 2, left to teach my college class, came back at 4 and stayed until 6.
When I got home, I went to bed. My entire neck was sore and it hurt to swallow. The next day one of my students asked me if I had a vampire bite. Funny.
Now I was waiting for the results of this new test. Waiting is the worst when you’re starting to have the feeling it’s not good news. The lump seemed bigger, harder, and more visible as the days went by. I constantly touched it.
The Results
Finally, the day came for my results. The doctor seemed optimistic and also seemed to think the lump looked smaller. She even asked if they had drained fluid out of it. I looked at her in disbelief. It had never been a fluid filled lump as she could see from the ultrasound. Then she read off the results.
“Benign… see, that’s good!”
“Benign appearing epithelial cells, but cannot rule out follicular neoplasm. Well, that’s not good.”
Me: “Well, what does that mean?!?”
Basically, it meant further investigation was warranted. She referred me to a surgeon 3 hours away. The only way to know what it was, for sure, was to have that half of my thyroid removed. By this time, I knew, in my gut, it was cancer. My husband kept saying wait and see, you don’t know, but I’m a realist. The lump came up quick, it was hard and seemed to be getting larger.
Discussing Surgery
When the surgeon called, we decided to do an exam and with surgery happening the next day. This would keep me from having to come back. I had to wait until the end of May for an appointment. This just gave me too much time to think and research on my friend Google.
The thyroid lays across some very important parts of your body. This surgery could cause vocal damage or damage to the parathyroids if not done correctly. There are 4 parathyroids, which are no bigger than a grain of rice, right behind the thyroid. These control calcium levels in your body. The surgeon I was seeing specialized in this type of surgery and did minimally invasive surgery. This just meant I wouldn’t have a large scar. I really didn’t care about a scar, I did care about my vocal cords and all the other important things in my neck.
May 2013
Since the surgery is considered outpatient surgery, my husband and I rented a hotel room. I had to take off a week of work, which I was glad to miss. During the initial exam, the doctor needed to look at my vocal chords. He shot numbing spray up my nose then stuck a camera up it and back down through my throat. Fun. Then it was down to the lab to have blood drawn. Double fun. It’s always a challenge to get blood from my arm. I think my body would rather keep it.
I didn’t sleep much the night before. You have to stop eating and drinking at a certain point. We could hear doors slamming and people running around in the hotel all night. Also, this was the only the second time I’d been put under. I had my wisdom teeth removed when I was 16 and they put me to sleep for that. My biggest concern was the idea that someone’s hands would be inside my body. I know that’s probably weird, but it’s how I felt. That thought warred with the fact that I wanted the lump out of me.
Surgeries never seem to occur on time. I don’t really know why this is, but it’s slightly annoying. Waiting is not fun. Basically they prepped me, put me under, and did the surgery. I awoke in a recovery room asking for water. Then I was moved to a room with a padded chair with my husband – no bed. When I was somewhat coherent, they released me. I went back to the hotel room with my husband and slept better than I had in quite some time. We had to stay one more night, so the hospital could call and make sure things were good. Things were good, so we headed home the next day.
After Surgery
I spent the rest of the week sleeping in an upright position. Lying flat was not comfortable. I had a small incision, about 2”, across the base of my throat. It was covered with a steri-strip. No stitches, just glue. Now I was waiting for the results.
I went back to work the next week and tried to concentrate on the tasks at hand. Since I work at a computer, Google was always tempting me to look for more information. I guess I thought I might find the answer, but of course I wouldn’t. That Thursday, the surgeon called. He asked how I was doing then confirmed it was cancer. Right after he told me, he got a call he had to take and put me on hold.
I sat there, waiting again, trying to hold it together. When he came back on the line, I had a hard time speaking at first. We discussed what would happen next. Since I had small nodules in the other half of my thyroid, he believed we should remove it too. I agreed. We scheduled the surgery for the following Tuesday, which happened to be my mother’s birthday. This would be only two weeks after my first surgery.
I immediately called my husband, crying and distraught. He said you told me you knew it was cancer, so why are you so upset. Actually hearing someone say you have cancer, even if you strongly suspected it, is distressing. I forgot his boss knew my parents. He had to ask for the next week off, so he had to tell his boss why. I was going to wait until I got off work to talk to my parents, but the boss called my dad and dad called mom and mom called me. I just wanted to get through the rest of the day.
2nd Surgery – Early June 2013
Once I finally got the pathology report, I learned I had a golf ball sized follicular carcinoma. It’s only about a 5% chance that a thyroid lump is cancerous. The chances of it being follicular are a little lower than that.
The second surgery was not as pleasant as the first, not that it was pleasant. It was 2 in the afternoon before they started prepping me. One nurse tried twice to get an IV in on my left arm, before a different one got in my right arm. She said I was dehydrated. Sorry, I haven’t had water in over 12 hours. I could feel my husband’s irritation filling the room. After the nurses left the room, I told him to try not to hurt anyone. He said he wasn’t making any promises.
When I awoke from the second surgery, I was in a bay with what seemed to be many other patients. Not so sure about that because I went back to sleep. Then I was in the padded chair again. My husband was going to leave to drop off my prescriptions at the pharmacy. I got upset because I didn’t want him to leave. The nurse talked sweetly to me and gave me scarf. I faded out again. I remember being pushed in a wheelchair to the car.
When I woke back up, we were parked at a CVS and my husband was gone again. He came back with all my new meds. I would have to take heavy doses of calcium for the next few weeks because of the shock to my parathyroids. My husband thought these were chewable and gave me two to take. Not chewable. I threw them back up and my husband was very upset. He was worried because he knew my throat was hurting. I just wanted to go back to the hotel room.
I fell back asleep once we were settled in at the hotel. Sleep was much easier during this time. Another overnight stay & check in with the nurses the next morning. Then, another week home from work. When I went back to work, I didn’t feel completely okay, but I needed the income. At least in my mind I did.
Waiting…
I had to make an appointment to see an endocrinologist for further treatment. My last surgery was in early June. I didn’t get to see the endocrinologist until September. That was a long wait & it makes me angry that I had to wait so long to find out what else I needed to do. I’d lost a vital part of my body, didn’t know if I needed further treatment, & my thyroid hormone levels were way off.
The only doctor I could see until then was my ENT doctor who seemed to think my TSH of 8 was okay because I no longer had a thyroid. I knew from my extensive research, this was not true. The TSH is usually suppressed to below 1 to keep cancer cells from growing back. She wasn’t an expert on thyroid cancer, but she could have at least admitted she didn’t know. It was upsetting.
The months between June & September were the longest of my life. Your thyroid affects every part of your body & you cannot live without taking a replacement for the hormone it produces. I wanted to sleep all day, cry all day, & every part of my body ached. It was like trying to walk through chest deep mud with concrete shoes on. If you’ve ever had children & remember those first months of no sleep, you have a glimpse of how I felt. Except it was 100 times worse.
The worst part of all the symptoms I experienced was the brain fog. I’ve always been a quick thinker. During this time, I could barely remember if I had brushed my teeth. Work was more stressful than ever & I could barely function. It put me in a perpetual state of sadness or maybe it was a little depression. I was so frustrated about everything that I became a person I didn’t want to be.
I snapped at my husband & son & people I didn’t even know. Cried frequently. I worried even more because I didn’t know what was going on inside me still. Did they get all of it? Would I need treatment? Will it come back?
September 2013
Finally, September came.
My husband came with me for support because I just couldn’t do it by myself. I had to go the week before for a blood draw – 4 or 5 vials worth. The doctor came in & she was so warm & friendly & understanding. It was a relief.
I would have to have treatment & that meant 3 days of quarantine. I broke down crying because the idea that I couldn’t hug my husband or my son for three days was heartbreaking to me. Treatment meant taking radioactive iodine which meant I would be radioactive.
The same day I found out about my treatment, my boss called to say we would be closed the rest of the week. This turned into them closing the doors permanently due to bankruptcy. I never even got my last paycheck.
Thyrogen Shots
The week of my treatment, I had to drive to Albany Monday & Tuesday to get a shot of Thyrogen in my backside. This would keep me from having to stop taking my thyroid medicine & having to go completely hypothyroid. I also had to follow a low iodine diet for 2 weeks before the treatment.
Not all insurances will pay for the Thyrogen shots because it’s over $2,000 dollars for them. I was certain mine would not but they did. Of course, they tried to back out of it 6 months after I had the shots because someone made a mistake. They still paid.
Anyway, without those shots, you must stop taking the thyroid hormone until your TSH rises to a certain point. This is so any leftover thyroid cancer cells will uptake the radioactive iodine better.
The Treatment
This treatment required me to quarantine myself in a room with a bathroom connected that only I was using. I had use disposable everything & keep in a trash bag for a week after treatment before disposing it. Gloves were required if I went out into the house, which I only did when my family was at work & school. I couldn’t even walk my dogs or pet them. They have thyroids too. I was also required to sign a waiver saying I would go directly home & not travel on public transportation for so many days.
This was absolutely ridiculous to me. Some hospitals have rooms for you to stay in during this process because you are radioactive & it can affect those around you. Why was it okay for me to walk through a hospital full of people to my car? Why is it so different from one place to another?
The day I had my treatment, I went to the area I was told & spoke with an oncologist for about 5 minutes. That cost $300. That’s the only interaction I ever had with an oncologist. The put me in the room where they do scans & such & I had to sit in an armless office chair the whole time. The lady brought out a metal container with tongs & opened it up to reveal an opened tube with a big pill in it.
“Tilt the tube back & put the pill in your mouth. Don’t touch the pill with your hands.” She said.
I did & she handed me a glass of water to take it with. Then I sat in the armless chair with my word puzzle book for 30 minutes, by myself.
She came back & scanned me with a Geiger meter & gave me the okay to go with instructions to follow the rules on my paper work. Oh, and if I threw up within the next hour, I needed to come back. Nice.
Quarantine
I spent the next 3 days in my room watching TV alone drinking lots of fluid & bathing frequently to help flush things out. The toilet & tub had to be wiped down after each use, by me. I also sucked on hard candy to try to prevent the radioactive iodine from settling in my gums.
It was a relief when it was over & I could hug my family again. I was also worried I might hurt them in some way because I was still radioactive. Strange feeling.
The Aftermath
After a week, I went back to the hospital to have a whole-body scan. Everything looked good, now I just needed to get my levels to a point where I could function. That meant going for blood draws every 3 months, then the doctor. Eventually I moved to 6 months. This past year I go the go ahead for a yearly checkup, which was awesome to hear. Usually you need to wait until you’re 5 years cancer free for that. I did it in 3 years.
This still affects me daily. It’s a struggle to get out of bed sometimes. Stressful days wear me out faster. I have creaky joints like I’m 80+ years old & my hair frizzes out like a Fraggle Rock puppet some days. There is an alarm set on my phone so I can get up an hour earlier to take my medicine. No eating or drinking for an hour after taking it. Sometimes I take naps. Thus, is my life now.
There are ups & there are downs, but I decided at some point that I had thyroid cancer. Thyroid cancer does not have me. It was something that happened to me. It affected me & my family & it changed my life. I’m still living & want to make the best of every day, no matter how hard it might be. Life is a good thing, that’s why I’m living it!
That’s my story so far.
