“Geez, why are all of these posts so doom and gloom? All of them!”
*Continues scrolling Thyroid Cancer Support Groups*
“Wow, they sure do complain a lot.”
“I can't believe everyone is so miserable. I want to help them with some positive thinking. They're all so hopeless. I have to blog about my thyroid cancer journey.”
*Leaves Thyroid Cancer Support Groups*
This was a conversation I had with myself – while telling Kevin how the groups were full of Negative Nancy type women and I couldn't stand it.
To thyroid cancer survivors: I hope this post gives you a glimpse into the reality of post-thyroidectomy life. If you're experiencing anything like what I am, just know it's normal and in most cases, temporary.
OUR LIFE TOGETHER
Kevin and I had a whirlwind relationship. We met in September and got engaged a few months later. Then, we found out I had thyroid cancer and everything went spinning. We didn't freak out about it, really, we just wanted it out of my body. Both of us were researching like crazy and felt we had a good overall idea of how thyroid cancer worked and what life after a thyroidectomy was like.
Boy, were we wrong.
So, so wrong.
The women in the groups, desperate and begging for answers – any answers at all – were not being “negative”. They were living the reality I am in now. Post thyroidectomy HELL is what I usually call it. The kind of Hell where you look fine, but you're not. The kind of Hell where you want more than anything to go back to your old self, even though you didn't feel great then either… it was better than this. The kind of Hell where people tell you you're “lucky” you got the “easy” cancer.
FOR BETTER OR FOR WORSE
We bought the Slingshot when I first found out I had cancer. It wasn't the most financially responsible thing to do considering I just sold my blog (which made all of my money), but hey, I had cancer… fuck it.
This weekend, we went to a Slingshot show and it was amazing. It was near Las Vegas and we got to meet a dozen or so Slingshot owners who we now are happy to call friends. Unfortunately, I was only okay for a few hours each day so the rest of the time I was in the hotel room or in the hospitality room by myself. I don't mind being by myself, but when you're feeling icky, it gets lonely.
It was our one year anniversary this weekend, so I was excited to go to dinner, go bowling, and just enjoy our hotel room with no kids, ifyaknowwhatimean. Eh, apparently my thyroid thought that plan was absolutely hilarious. We split off from the Slingshot group to start our anniversary date. After waiting more than two hours to be seated (after we were told it was only a 1 hour wait), I felt sick almost immediately. I knew I needed to hold it together. We had dinner and then bowling, I couldn't get sick tonight. I rested most of the day, I shouldn't be sick tonight. Why now? Why me?
I made it through dinner – barely – but couldn't even think about bowling. I was so out of it I don't even remember getting back to the hotel room. The next thing I remember, I was sick. Really freaking sick. Again.
“Babe, take a picture. I have to write about this.”
“Yes, right now. Yes, while I'm crying. Yes, while I look like shit. Just take it.”
After he took the picture, I fell asleep. Finally. Sleep is the only thing that stops the nausea. The shaking. The sick feeling that follows me everywhere I go.
I didn't ever want to have to take a picture like this. I never wanted to write a post like this. The whole reason I even started writing about my thyroid journey was to inspire others who may be getting ready to go through the same thing, and to inspire those who have already gone through their thyroidectomy.
I never dreamed of being so sick I couldn't even sit up in bed. We've all seen the cancer pictures… where a professional photographer is hired and the cancer survivor puts on makeup, rocks the bald head with some boxing gloves, looks beautiful. This is not a picture like that. This is a picture of what it can feel like after you've already gone through the thyroidectomy. After the thyroid cancer is gone. After you're able to say you're a “survivor”. After you get meds and are supposed to feel better. This is life until your meds are evened out, which could be months or years.
SO HOT, SO COLD
I'm always hot or cold, usually hot. It feels like my body is burning from the inside out at times, and walking outside feels like walking on the surface of the sun.
I'm in a good mood, then I'm in a terrible mood. There's rarely an in between. I lose my temper easily, and am angry more often than not. It's not just hot and cold with temperature changes.
LIFE AFTER THYROID CANCER
I have friends that message me to check in all the time and I don't ever want to answer truthfully because I don't want to be that person who always complains about their health issues. I refuse.
I hate the question, “how are you?” because I'm so used to saying “great!” or “good, how are you?”. Now, I just lie. I say I'm okay, but I'm not. There aren't good days and bad days, there are bad days and really bad days. There are good hours, but no good days yet. I fight through and I focus on the good hours. I focus on trying to feel better so Kevin doesn't have to take care of a sick wife when he deserves to live a more carefree life. I try to remember the good times, before thyroid cancer, hoping I will see those days again.
Eventually it has to get better. I am starting some supplements tomorrow and will definitely update this post if they work. I hope they do and I'm staying positive about it but I'm not going to hold my breath, either. I wish I had seen a post like this before my surgery. I probably would've just thought the person was whining and being negative, but maybe it would've better prepared me for Thyroid Hell.
CANCER POEM
“What’s it like to go through cancer treatment? It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.
Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!
So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion – “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” – and you really appreciate the support, but the mountain lion is still coming.
Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”
As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy – they’re half grown and only have three legs or whatever, and you think to yourself – why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that – and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?
Finally, the person closest to you, whose job it is to take care of you – maybe a parent or sibling or best friend or, in my case, my husband – comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.
Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ass but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”
Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.
Maybe. You’re not sure – it fell off the cliff, but mountain lions are crafty. It could come back at any moment.
And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”
Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “fuck this mountain, I never wanted to climb it in the first place.”
I was diagnosed Dec 2018 and had my total thyroidectomy in Jan 2019. Just found out that there is more cancer in my lymph nodes. Now on to Moffitt Cancer Center in Tampa to come up with a game plan. The struggle is real!
As a 24 year thyroid cancer survivor, I want to say your cancer poem is probably the most accurate description of having thyroid cancer. It is a struggle, but once you find a great endocrinologist that knows what they are doing (those endocrinologists are almost as elusive as unicorns) it is possible to have a great life.
Omg!!! Best poem I’ve ever read!!!! Everything is on point! <3 survivor here too, got diagnosed operated in 2019.
I’m having surgery July 16th and I am nervous! I’m 27, I had a heart attack at 26 and now have a low ejection fraction because of it. I pray the road gets easier. Thank you for sharing your truths!
The poem sums it up!! It will be a year this month since I had my thyroidectomy, and about a month since the meds seem to be right. Thank you!
I just stumbled upon your blog and it is spot on! I am 2 weeks post op total thyroidectomy due to Thyroid Cancer, and just the first two weeks have been the hardest recovery of my life. Thank you for sharing your story.