As I’m being wheeled in, I see the door and my stomach flips. I’m in the same room as MIBG 8 years ago…
Catch up here on my experience so far with metastatic thyroid cancer and how it led me to doing a massive surgery, and now RAI treatment 
With what I know now, I created a protocol I believed would change the future of any procedure I’d have. I didn’t realize this fully, but it would translate into any procedure… even my most dreaded: radioactive iodine
Why do I dread this treatment? Or anything related to iodine for that matter? Well, I’m allergic. It’s been fun navigating an iodine allergy all these years while having a life saving need for nuclear medicine scans and treatment that require it to be used.
Although contrast allergies are common, my iodine ‘allergy’ stems from mast cell activation syndrome. A co-morbidity that severely impacts my body’s response to treatments and procedures, and also daily life stuff. Such as scents, foods, medications, stings and bites, environmental factors… you can read about that life saving discovery here
If you’ve been around a while, you’ve probably read my MIBG retelling. I laid it all out, I got very specific and technical. I didn’t want anyone to be surprised the way I was. At the time I felt it was written as more of a warning 
But over time, those warnings have turned into triumphs and read as a survival guide. We will sort it under Fabvocacy files shall we?
March 1st: 2 weeks to treatment..
I needed to do some fine tuning for the protocol. I still couldn’t believe how well surgery went, and wanted to continue that. However, there were a couple adjustments to be made that differed from surgery.
- No alpha beta blocker increase
- No need to stop aspirin therapy
- Discuss ongoing Benadryl dosing
- Confirm steroid stress dose
- Prescribe crisis dose of solucortef
- IV zofran, Cortef, and Benadryl during administration of treatment
This treatment in theory should not impact the pheos. They’re not binding to those cells, it’s targeted to the thyroid. So the plan would be altered.
I am someone who needs the iron clad details, every possible outcome pre-planned and prepared for.
I needed to feel safe, but I didn’t.
For me, safety looks like details. I need as much information about the situation I’m heading into.
I realized however that the small details weren’t more important than me staying regulated before treatment. I made a choice to trust that it’ll work out, I’d address things as they came.
I believed in my strength and ability to communicate in the moment.
A first for me.
I put all of my energy into healing, regulating my system, ensuring I was mentally and physically prepared to begin the treatment. Keeping in mind the timeline from surgery to RAI was extremely close.
I began the 2 weeks of low iodine diet, some food inspiration below
And then treatment week was upon us
Monday:
Skip synthroid, get labs done
Head to day clinic to get thyrogen injection in right butt cheek
Tuesday:
head to day clinic to get thyrogen injection in left butt cheek
Wednesday:
skip synthroid, get labs done
Head upstairs to be admitted
Followed by iodine treatment
Treatment day
I arrive on the floor, I’m hesitant.. unsure how I’ll be treated. My last experience with radioactive iodine was more… experimental
It was hard to feel like a spectacle and not feeling human anymore
Being locked away, a lead room. It’s daunting.
They tell me I’m in room 12 with a warm welcome, I’m being wheeled to my room and it hits me..
I’ve been here before
I see the door and my stomach flips. I’m in the same room as MIBG 8 years ago…
When I wrote about my experience at that time, I said “do you know what the word traumatized means…?”
This time however, I felt like this was an opportunity being given to me to rewrite my future. I can’t change the past but I can use it to help me in the present.
I already knew what to expect as far as the room and the isolation aspect. I knew there’d be no one checking on me physically or taking my vitals. I knew they’d only come in if I’m in desperate need of intervention.
I fully knew what I signed up for this time, thank you to 2016 Miranda for bravely writing it all out!
I’m coming in with a strong plan, my game face, and my healing tools. Nothing will rattle me this time. I will not find myself in the same situation.
The nurses and I went over my medications, another huge relief is arranging in advance that I’d bring my own. One huge stress to take off is not relying on anyone to give you meds on time while in isolation!!
Having my normal medications and my protocol medications, I don’t need to rely on anyone to give me what I know my body needs. Relieving any anxiety that comes with asking or explanation.
Next, they brought in my special order ergo air bed. Eeeee!!! This can be difficult to sort out but it went so smoothly this time. Another huge wave of relief washed over me as the traditional hospital mattresses provoke pain thereby making my mast cells further degranulate. Pain is a trigger, and as someone who can’t take narcotics, we have to stay ahead of it naturally.
I hadn’t even had the treatment yet and somehow I felt like the hard work was done. I realized I’m more than prepared than I gave myself credit for, maybe the stress I felt wasn’t for the treatment…
But for the trauma survivor’s need to be in control and know all the things.
But it’s also MY LIFE and I always say NOBODY will fight harder for you than you will for yourself
It’s the continuous effort to make it all align, it’s all the hidden work we do living with a complex illness!
The stakes are too damn high. This is my show and I’m running it the way I deserve to be treated and if you’re not here for it MOVE IT RIGHT ALONG
Well that got a little spicy. I am writing from my hospital bed at midnight of day 1, as always I wanted this to be as real and authentically in the moment as can be. Ok, *breathe*
The radioactive iodine pill
Many people when receiving radioiodine don’t need to be hospitalized but it does depend on the dose and other health factors
My dose was 150millicurie which is on the higher scale. This is a reflection of the type of cancer and how much was able to be removed during surgery.
Nuclear medicine brought in what looked like a bomb squad robot and opened the heavy lead capsule to reveal 2 smaller heavy canisters that protect from the radiation. He then takes tweezers to remove the pills, one by one, and I swallow.
I swallow and finally surrender.
I put trust in my body’s ability to heal
I put trust in my doctor’s knowing
I put trust in the protocol
I put trust in the plan
I put trust in god
Everyone leaves the room as soon as I’m radioactive. The Geiger meter comes out and starts measuring the radiation I’m emitting.
I can hear serge informing himself of how to come in and help me as my caregiver, if needed. How to properly go in and handle bodily fluids if necessary (the most radioactive part) and I can’t help but smile knowing he doesn’t want to be away from me for one night.
Even when I’m a radioactive mutant
Knowing all we’ve seen together, I can understand his hesitance to leave me.
He arranges a stretcher outside my room, and promises I don’t have to be scared. If I need help, he’ll be there.
I decided for him to spend the day with our William 
It shows how far I’ve come. How much I trust myself to do this. I spent the afternoon alone trying to get a feel for how the medicine was interacting with my body.
The first 2 hours I felt nothing, a tiny bit of brain fog perhaps from the prep medications, then a little headache, shaky, but then I realized… I’m just hungry!
I ate a juicy apple and decided to take an hour to meditate and rest.
Around 5 my heart rate had shot up to the 108 range and I decided it was time to take my next doses of Benadryl and steroid. It began to calm down and I felt even more confident in the plan. Excited even.. is this really possible? To feel this good? To feel this okay?
I was smiling uncontrollably and began to colour while listening to music.
It made me very aware of how easy things can be if they’re done with all the right information.
A part of me grieved for all the years everything had to be so damn hard. I held space for that part while I let us relax into this new ‘normal’..
Serge brought me a delicious low iodine dinner, chicken breast, basmati rice, and broccoli, with non iodized salt. Delicious!
You have to maintain the low iodine diet for 48 hours during treatment to REALLY ensure the treatment finds its way to the thyroid cells.
I don’t know how many times I repeated “everything is always working out for me no matter how it looks at any point in time” but it’s been a lot, if I have to be delusional to receive what I want so be it
I’ve been trying to stay ahead of the symptoms all day, really tuning into what my body is telling me. I took my next protocol dose around 10 and now… well I’ve taken my sleep complex CBD and I’m getting tired. I’m writing this with a smile, because it went well. It went really well.
The biggest discomfort I’ve had is the fear in waiting for things to abruptly change. Like they always did.
Things didn’t change though, I went to sleep. The worst symptom I had all day was a high heart rate which went down with my medications.
Is this.. what it feels like to NOT be medically complex? Is this.. normal??
As someone who’s always craved normalcy, have ‘normal girl’ days…
I know I’m trapped in a lead room being pumped full of radiation but like, you get it 
I realize now that normal can come in all forms, and right now I’m having a normal radiation experience and it feels…
Well, fabulous.
*I was discharged after only 24hrs in isolation. My radiation levels were safe to go home, which was a welcome surprise. It’s been exactly one month since the treatment as I write this update. The last month has been filled with nothing but positive recovery and healing. It’s been truly amazing to see how years of trial and error has translated into this incredible outcome.
As for the cancer, I will know how the surgery and treatment collectively went in May when I see my endocrinologist. Stay tuned 
I always dreamed you’d find hope within my story, and my dream has come true.
Follow along with Miranda through her social media channels for daily content