LC’s Story: Rad AND Rad-ioactive – Thyroidectomy and Radioactive Iodine

Sometimes having something so small taken away doesn’t seem like the most extreme thing, until you realize after it’s gone just HOW important it was.linda

It started in December 2010 when what I thought was a cold just wouldn’t go away. From there it turned into a cough that just lingered for months. Every month I was at the doctors, urgent care or ER with the same issue; no amount of antibiotics, cough meds/suppressants, allergy pills or post nasal drips were helping at all.

In May of 2011, after being seen in the ER, the doctor had asked why I haven’t been referred to an ENT at this point. So there was the recommendation (with HMO there’s nothing like waiting). Late May was my first visit to the ENT, who felt a lump in the middle of my throat and asked how long have I had the lump. I don’t really know, I’ve never noticed it before, but the more he made me feel it, the more I wondered just how long has that thing been there?!

In June I was scheduled for an ultrasound that came back not looking so clear and off I went for a biopsy.
Those biopsies, they never tell you just how uncomfortable they’re going to be or how my eyes wouldn’t stop watering afterwards or how my throat would feel like it was a swollen football and I wouldn’t be able to talk.

My ENT doctor, bless his soul, must have been the nicest man when he had to deliver the news; the words will forever be in my head almost like a marriage proposal. “LC, I want to make sure you understand and listen to what I’m about to tell you. You’re biopsy came back and the nodule that has grown on the outside of your thyroid has tested Stage 1 cancer”.

“WHAT?!?!?!?!?!CANCER!!!!!!!” Of course the hysterics hit once you hear those words, it’s like a movie in slow motion “Yoooooouuuuuuuu haaaaaaveeee Caaaaaaaannnnnnccccceeeerrrrrrr”. Right?!

After the water poured out of my eyes and my ears were no longer muffled, I could hear him speaking again. “It’s going to be OKAY! It’s only Stage 1, we’ve caught it in time, these are our options: 1) we go in and remove the nodule and send it for testing, but if it does come back that the cancer has spread to your thyroid then we will have to go back in for another surgery to remove the whole thing or 2) we remove everything, you’re on thyroid meds for the rest of your life and that’s that”. Well those two very wonderful choices left me speechless, powerless and most of all in shock. I asked “Doc, what would YOU do, I mean if it was You or your daughter or your wife, what would you do?!?!”

He had the most gentle voice and understanding spirit “LC, I’d remove the whole thing because I wouldn’t want to take any chances, but it’s not me – it’s you and I need you to go home discuss this with you’re family and call me to let me know what you want to do, I will be doing the surgery either way and no matter what I won’t let you down, You’re going to be just fine“.

Well the options weren’t really options at all; I’ve got a 50/50 so let’s just go all the way and take the whole thing out so I don’t have to deal with it again. Things are explained so differently and understood in a different nature and language when the word Cancer is attached to it. What you hear is it’s just a gland, you don’t really need it, there’s meds for it, it weighs about an ounce and it’s the shape of a butterfly. Huh…who knew. But in reality the meaning of that tiny little one ounce butterfly gland is…Controls your Weight, Skin, Hair, Nails, Mood, Weight (oh did I mention that already), Energy, Metabolism, Weight – Oh YES your WEIGHT! Being female, this weight thing is actually an important factor in life, being a female over 40 it’s a great big factor in life. Don’t be so quick to just fly away there little butterfly, turns out you’re actually a main factor in my equation. But ALL That, I didn’t hear, all you heard was Cancer and at that point I just wanted it all gone.

September 2011 I had a total thyroidectomy, a lot of ice cream, my venti iced nonfat vanilla latte the day after surgery and a crazy amount of rest. Two weeks after surgery my follow up and removal of stitches came so there I went to my wonderful Doctor/Surgeon just waiting to have my bandages off and get back to my life again. As my sister watched in awe as the doctor snipped and clipped, I just couldn’t wait to move my neck around and see my scar. Then he sat back and said how beautiful it was going to be, it was not going to be noticeable at all and there was some things in my chart he wanted to go over.

Then it all began like this “LC, I received the results back from what was taken and it seems that the cancer has spread to your left lymph node“. Again ——————- WHAT?!?!?!?!?!?!?!?!?!

I don’t really know what he said after that, since my ears muffled and my eyes wouldn’t stop watering, so it was left to my sister to hear everything that was going on through her own tears. After sometime all I heard was we are going to treat this with Radioactive Iodine (RAI) and do a body scan. I’m going to be “Radio Active”?!?!?!?!

With the conversation going “it’s only 3 days and do you have a beach house to stay in perhaps?” A beach house?!?! Really?!?! No I don’t. Because I’m going to have to stay somewhere isolated for 3 days and it’s going to require some extra measures on my part.

There was a time that came that I really “Lost It” – the Biohazard Ward at the hospital when they explained all the details that involved the RAI treatment, like being contaminated and isolated for 8 days. EIGHT DAYS?!?!?!?! WTH! What happened to 3?! Well, the 3 is when you’re completely and ridiculously radioactive; the other 5 are when it’s leaving your system and extra precaution. That’s when the time came that I just got up, walked out and said “Forget it – I’m NOT doing this!” Leaving my parents there to apologize that their daughter is delirious and under a lot of stress. Two weeks later we tried it again, this time my parents called for backup and made my sister go with us, to be the watch guard. No contact for 8 days…

November 2011 was the day I actually became my super hero alter ego “Wonder Woman”, becoming radioactive, but no – my pee didn’t light up or become a beacon in the night, I was just an average person calling in for Starbucks orders to be left at my door and magazines to be dropped off when my sister took her lunch break. It was the longest 8 days I can remember…My kids brought my dog to wave to me from the car as I looked out the window and my boyfriend would stay on the phone with me when he was outside to try and make me laugh. But it finally ended the day before Thanksgiving and at Thanksgiving dinner my sister got the scissors out and cut off my hospital wrist band.

Mid 2012 I tattooed the biohazard symbol, the exact one from that wristband, on the inside of my right wrist as a symbol of strength, growth and never giving up. It reminds me everyday that no matter what I thought I’d never get through, I did. It reminds me that I am a Wonder Woman and I will always fight the fight.

There have been bumps in the road: weight gain, hair and nails are thinner, my metabolism is wacky, my crazy isn’t always in check and no matter what dosage of thyroid meds you’re on it just isn’t the same as that little butterfly gland some of us didn’t know was so important. I’ve fought through weight gain AND it has been a struggle, I can say that after gaining 40 pounds from my RAI and unbalanced meds, I’ve lost 18 and have been able to keep that off. I still have watchful eyes for another 3 years, but I don’t mind as long as nothing spreads or grows. It’s been a tough road but you finally realize it’s your battle and the only one that can be persistent enough to win it is — YOU!

Don’t Ever give Up and no matter what the doctors say, listen to your body it tells you things ONLY you can hear. If I wasn’t so persistent in going back and forth and fighting for what I knew was wrong, my cancer would have never been detected or would have been caught and Lord only knows what stage it would have landed me in or other damage it would have wreaked havoc on. I didn’t take anything less and I changed my life, you can too.

If you want to read more about (and by) LC, please check out her blog at EZBlu.blogspot.com.

For some of us our little butterfly has left, but it doesn’t mean we can’t grow our own wings and fly.

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4 Comments

Filed under Thyroid Cancer

4 Responses to LC’s Story: Rad AND Rad-ioactive – Thyroidectomy and Radioactive Iodine

  1. helen

    Hi hope things are better for you now. I was wondering how you lost our weight. I had total 2 1/2 years ago now and have gained 25 kilos. I am so over the weight gain i am looking at gastric sleeve. Please if you have any tips forward to my email thankyou

    • Hi Helen!
      Yes, I lost the weight by changing my diet to a low carb/high fat diet (essentially, no more pasta/bread/carbs/sugar, but trust me you won’t miss them, there are lots of better substitutes). I run another website called Low Carb Kitty that has a lot of recipes and information about this way of eating. I’ve kept the weight off and it also really helped with mental clarity/feeling blue.

      PLEASE let me know if you have any questions!!!
      Cheers,
      Sarah

  2. Lori Lyn Holton

    Thanks for publishing your story. I just passed the 20 year mark last month. I am 56, and have the weight issues as well. Will check out your site.

    My voice has been changing from gravel/squeak/normal on and off for the past few months. I will be seeing an ENT next week for that.

    I also have had trouble, the past couple of years, with meds not working for me. The saga continues.

    Thanks, Lori

  3. Mara

    Hi there, so glad I finally found this website to share my story, sorry I mean my tragic story of thyroid illness. It all started 2 years ago after seeing a weird lump in my neck which I mistook for some kind of throat infection! Anyway after LOTS of tests and Xrays, it turned out that it is my thyroid. The round that I’ve taken for a whole month between at least 10 outpatient clinics ended in removing my entire gland for a big benign tumour. At that time, all I was worried about were that typical hypothyroid problems, chiefly weight gain. Yet, another disaster was waiting for me; I started feeling burning pain in the tip of my tongue, toes and fingers which turned out to be caused by damage of peripheral nerves!!! Why ??? I’m not diabetic, I’m only 32 and I eat healthily. Big surprise, it is because of a drop in calcium levels caused by accidental removal of my parathyroid glands. Oh my God. So, I started taking calcium supplements + treatments for nerve damage that include painkillers powerful enough to sedate a horse and guess what?? they also cause weight gain!!! I was put on Lyrica 75 + Neurontin 300 + high doses of alpha lipoic acid + calcium supplements + acid suppressants as they nerve drugs gave me severe heartburn. Now, 2 years after the surgery, I take at least TEN pills everyday, I developed a peptic ulcer (again because of the meds), my thyroid lab tests are NEVER right, I suffer staggering episodes of nerve pain, I gain weight regardless how hard I tried to follow a diet, I feel like I’m seventy while still in my thirties. Any ideas to help me get my life back???

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