Seven years ago, the day after Easter, I woke up early for surgery. After a couple years watching some nodules on my thyroid, it was time to remove a necessary hormone-regulating gland.
At that time, there was no way to know for sure if you had thyroid cancer without removing it. It might still be that way, but I know they are working on changing that.
In fact, I participated in a research study at my hospital that was trying to find new ways to detect cancer without surgery. I really hope that people are able to know whether or not they have thyroid cancer before having to undergo major surgery.
How it was discovered
Although thyroid cancer has received a lot of attention in recent years, when mine was first discovered in early 2005, I was blessed and fortunate to have been assigned a doctor that actually knew about it. Most had no clue. I’ve heard horror stories from other cancer survivors who had spent years seeking a diagnosis.
I went to a local walk-in clinic because I thought I had a sinus infection. The last one I’d had was horrible and I didn’t want this one to get that far. Turns out I didn’t have a sinus infection. Instead, the doctor, after checking for swollen glands, starting talking about cancer.
Talk about crazy. I was not prepared for that. He insisted that I see a specialist immediately. Scared (and stupid, I suppose,) I put it off. The doctor’s assistant called several times until I finally scheduled an appointment, and eventually sought out a couple second opinions.
Since the only way to affirm a cancer diagnosis was so invasive, most of the doctors suggested keeping a close eye on it. They didn’t think my likelihood was that high of a concern at the time.
I wanted to have a baby, so they said to go for it. All went well. I had my first child and then when he was about a year and a half the doctors grew concerned. Some of the nodules (growths, goiters) in my thyroid were growing at an alarming rate.
Time for more second opinions again, and eventually the consensus was that surgery was necessary. I was fortunate again. My surgeon was one of the top 3% in the nation. He was wonderful and left almost no scar.
Obviously, this was a difficult time, not only physically, but emotionally. I feared not seeing my baby again, leaving him with no memories of me. (In fact, I still get teary thinking about it. Like right now as I type about it.)
I had a bit of rough recovery once out of the surgery, but all ended okay. There were some scary side effects, like the temporary loss of my voice (which I was told would most likely return to normal) and my hand muscles freezing up because of calcium issues. (The parathyroids control calcium and I lost some of those. Everything is fine now, though.)
Then a few months later came the radiation treatments (RAI – radioactive iodine) and the low-iodine diet that I had to be on – which totally sucked.
Then I had to go to the hospital to take the radioactive pill. It was in a metal container and no one could touch it. Not even me, the person swallowing it. (And if you’re curious how much radiation costs, that one pill was $20,000. Thank God for good insurance!)
Then there was the horrible night of isolation. I cried quite a bit. As much of an introvert as I am, forced solitary confinement while undergoing such a traumatic event (cancer, radiation, horrible low-iodine diet) was a double-suck pill.
I had no interest in watching TV and could only talk to the nurses through a closed door. It wasn’t easy because if I remember correctly, they had to stand pretty far from the door, so as not to get too close to me. I was a walking danger to other people.
People were kind enough to give me gifts before I went in: magazines, a book, and other things to keep me distracted. The only things that worked were the magazines. I couldn’t focus on the book. I tried, but I just couldn’t.
The food that I ate that night came up, a lot, and combined with the stress of everything, I’ve never been able to eat most of those foods again. Luckily, I didn’t eat much to begin with.
The whole thing was traumatic, but I didn’t want anyone to feel bad for me so I put on a strong front. I’m like that. Always have been.
The next day, I was cleared to go home. They said it could be up to four days, depending on how long it took to get enough radiation out of my system. I was cleared to be isolated at home. But with baby at home, I went into isolation at my mom’s house, trying to avoid them so as not to make them radioactive, too.
Beyond that were body scans, complete with the low-iodine diet again. Have I mentioned how much I hate that diet? It’s horrible. (Check out ThyCa.org if you want to see what it’s all about. In all of its glorified suckiness.)
Then there are the blood tests. After having my thyroid removed, they were every few hours. Then something like weekly and then monthly (I can’t remember exactly) until it got to the point of being annually.
Now two years. I just made another appointment and was told my last appointment was two years ago. I must be doing better if I was able to go so long between visits!
Aside from the bi-annual blood tests and doctor appointments (and occasional neck ultrasound) that’s about it. They say I may have another body scan (with the low-iodine diet) but I will beg and plead against the scan unless there’s real reason for concern. Tears will flow.
I have to take a pill each morning to replace the hormones my thyroid should make. I have to wait an hour after the pill before eating or drinking, so that means no coffee at 4am when I get up to write. Luckily, that’s no big deal. I’m used to waking up without caffeine. But fifty minutes after that pill, you better believe I’m preparing coffee!
Every so often, I have some pain in my jaw area. It’s hard to explain, it’s not like typical jaw pain (and I know jaw pain, I have TMJ). But when I get those pains, I just take that as a reminder to be grateful to be a cancer survivor. It’s easy to move on with life and kind of forget about it…especially since I don’t like thinking about it.
Anyway, I’ve rambled on long enough. If you haven’t gotten enough, in a post last year, I shared the letter I wrote to friends and family at the time. I was a lot more diplomatic than this post. This is the first time I’ve let the veil down and not sugar-coated some of my feelings. Also, in that letter is more info about what thyroid cancer is and more detail about the treatment itself.
Get your thyroid checked!
If you made it this far, I appreciate you taking the time.
(Image Source: ThyCa.org)