We Are At The Beginning Of Change…
Thursday January 24th 2019


Life Redefined: Scanxiety

Post Published: 30 August 2011
Category: Column, Life Redefined, Thyroid Cancer in Young Adults Column
This post currently has 3 responses. Leave a comment

This past month has been a month full of health stuff. I-131, scans, blood draws, ablation, more blood draws, more scans. Lather, rinse, repeat. I knew it was getting to be that time of the year for scan, but everything was set into motion really quickly. The clinical manager at my endocrinologist’s office called and said she had Thyrogen for me if I wanted to go ahead and schedule. As many of you know, there is a massive shortage of Thyrogen right now, so when the clinical manager offered me some, I couldn’t pass it up. What I really wanted to say was, “Well, I’m not mentally prepared to deal with this right now,” but I couldn’t because if I didn’t deal with it now, it might be months and months before I would be able to get a hold of more Thyrogen. And I didn’t want to go off my thyroid meds as prep for the scan because I’d done that before. Twice. And I never want to do it again if I don’t have to. I was beyond grateful to have the Thyrogen so I went ahead and scheduled my I-131 scan. But I wasn’t mentally prepared. I hadn’t prepared myself to start the low iodine diet. I hadn’t created a plan keep my fears from raging out of control in the midst of scanxiety. But I had to move forward, and that’s what I did.

About two and a half weeks ago the clinical manager called with the results of my scan and I heard the word we all dread: “uptake.” To be honest, I was stunned, but I don’t know why because I’ve ALWAYS had uptake. I guess I expected it, but it was still hard to hear. My endo, radiologist, and myself decided to move forward with another ablation. And so I went back through the whole process again, still not quite mentally prepared to face it all.

I had my last scan yesterday and I wish I could say that I left the hospital with a new nugget of wisdom to carry me through life. But I didn’t. I still hate the low iodine diet, I still hate the radioactive iodine, I still hate the pre-scan bowel prep (read: laxative), and I still hate having to deal with scanxiety. Hate it all.

I’ve come to realize that to power forward through all this stuff when I’m not prepared (and honestly, are we ever fully prepared to face this?), I have to find things that are good. That’s what gets me through it. And I don’t need to just think about the good things, I need to list them and really focus on them. And here’s what was good in the midst of all this stuff that I hate:

My doctors. I love them. They treat me as an individual and that’s so important to me. They consider the standard treatment guidelines, but don’t feel like they’re tethered to the guidelines. We work as a team to figure out the best treatment for me.

My mom. She’s too awesome for words, but I’ll just say that there’s no way I could have made it through the low iodine diet without her help.

My hospital. I go to a great hospital. I’ve had such positive interactions with the nurses and doctors and techs in the nuclear medicine department and the imaging department. For that, I’m grateful.

My friends and family. They found reasons to make me laugh while I was dealing with this stuff I hate.

My iPod. It’s full of great music that I was allowed to listen to during my scans.

Social media. It was my connection to the outside world when I was radioactive and isolated.

My mom. Did I mention that she’s awesome?

This list isn’t complete, but it’s a good start. These are all things that allowed me to keep moving forward when I didn’t really want to.

What keeps you moving forward when you don’t feel mentally prepared? How are you able to endure scanxiety? Do you focus on the good stuff? If so, what’s on your list?Talk to me, peeps.




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3 Responses to “Life Redefined: Scanxiety”

  1. Lolly says:

    Joanna I’m pleased you got a good health team but most of all a good mum to get you through this, You’re stronger than you think..

    I don’t know what realy keeps me moving Fwd probably the fact I can still breath and where there is life there is always hope I cling to that.

    Keep strong most of all hope you can beat this damn Cancer and won’t need to keep going through all the Trauma or Scanxiety.

    positive healing ((((vibes)))))


  2. Ruthie says:

    Hey Joanna. You are an inspiration for more of us than you probably realize.

    PS thanks for the tip about the iPod during scans. I wasn't aware that was allowed 🙂 I am a bit claustrophobic and freak out at the thought of having a whole body scan. So far, my first scan will be in March. Hope that they don't ask me to have one sooner. My Dr's appointment is in 2 weeks.

    anyyyywayyy thanks for being so awesome 🙂

  3. Alexa says:

    Ruthie is right! You are such an inspiration 🙂 I know I’ve told you this before but about a month or so before I had my TT I perused the internet and happened upon your blog Eye of the Storm. Just reading someone who’d experienced thyca was really inspiring and though it’s an arduous journey, you have taken the journey head on and have never given up. That, to me, is the most powerful statement anyone can make. Your voice and advocacy help many of us who are also fighting. You are awesome!

    Love you 🙂

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