My thyroid followup didn’t go as planned. I’ve been sitting with it for weeks. SO many thoughts littering my mind, I decided to wait until I was more clear on what was happening…
Summer
People say waiting is the hardest part, but I’m used to waiting. Living with a rare disease means results never come quickly, you don’t get one type of scan you get five. It just takes much longer.
It can take months to complete a full picture and have a real update, and by then – things can change again.
It’s exhausting.
I had a radical neck dissection surgery on January 31st of this year for metastatic thyroid cancer. Once my neck was open, they could see the spread was much worse.
As you all remember from the thyroid saga last year, countless biopsies proved to be unreliable. Imaging only showing a partial picture. We were forced to do a very expensive out of pocket molecular test to prove the diagnosis in order to get surgery.
After surgery, I was scheduled to do radiodine therapy within just weeks. My doctor wanted to get ahead of the aggressive cancer so things moved quickly. Including moving cities to be closer and able to do all of this.
By March I was having RAI, an iodine based treatment I’m severely allergic to. I was able to use my miranda protocol to its full advantage and it actually went very well.
Something we’d learned with nuclear medicine is that it takes time. It takes time to even begin working, and it takes time to see the true results.
I’ve seen far too many people be told that the treatment isn’t working when it hasn’t even had time to try. I’ve been there myself. “The clinical trial isn’t working…” “just keep her comfortable”
We learned to be vigilant but patient.
Here’s where it gets difficult. I have two rare endocrine cancers.
The metastatic pheo is stable (last we had checked)
But this means double the imaging, double the tumor markers, blood tests, and all the surveillance is double the work!
So while I normally get all of my testing during the month of July to see how the pheos are doing…
This year we had to also include thyroid cancer tests.
With my chemical sensitivity from MCAS, this complicated things greatly. As every form of imaging comes with a radioactive tracer, an injection that binds itself to the tumors in order to light up on a diagnostic scan.
Recovery has tough for me, to get my body stabilized.
In the grand scheme of things, understandably so.
I anticipated knowing a full picture of what’s happening with regard to the thyroid cancer by August. October for the pheos.
What I thought would happen…
August I went for my thyroid follow up. Let me start by sharing my expectations.
I HONESTLY thought I was going to receive some miraculous results that said biochemical no evidence of disease. Which would have meant my tumor marker (thyroglobulin) was undetectable or at least close.
I’ve always been sort of a delulu girlie but that’s what I truly believed was going to happen. I believed it would happen because I’d been literally working my ass off to make it happen.
Despite what I tell others about not having all that control, I expected to see measurable results from myself.
What really happened…
I used to never let myself have expectations when going in for results. I was reminded why,
“Likely you need another surgery”
“Or maybe the radio frequency ablation clinical trial”
“See something in the same area”
“You will need another biopsy”
What in the sweet fuck is happening
The picture I had visualized of how this appointment was going to go, shattered into a million sharp pieces.
Each word felt like a shard into my heart as I realized it’s like I’m repeating last year all over again.
But Miranda in the appointment, well you’d never even know I broke a sweat. I am an expert at masking.
I went into a sort of numbness with a constant stream of thoughts. Nodding my head, asking necessary questions, but detached.
I didn’t want to make something out of nothing until I got firm results. Or perhaps I didn’t want to make it real.
Either way, I decided it would be best to keep quiet until I had the biopsy.
Feeling in control is the first thing I reach for in situations like this.
But some things are simply not within our control.
The spiral…
You have to understand the thought process I was in, due to the complexity of my situation, the sensitivities I have, and my overlapping conditions.
I explained it to Serge like a house of cards. Each hit to my system is like someone removing my cards. Making my foundation weaker, threatening to have everything crumble. Depending on the hit, having to start over with a bit salvaged or from nothing at all.
Each condition I have has a direct impact on the other. Disease is managed in various ways, we can target inflammation, we can lower stress, control our food and water, reduce the toxin load, etc.
For me, doing all of the ‘right things’ doesn’t guarantee a damn thing. But it does help with symptoms, it helps prevent a cascade effect.
My body has been in that cascade since last year when my thyroid began poisoning me with Graves’ disease. Which led to my mast cell disorder out of control, which threatened to take away the stability of the pheo tumors.
Having surgery, iodine treatment, continuous radioactive tracers, contrast media, pokes, tests, stress, it’s hard to get back to a baseline.
Which is what led me to questioning everything…
My brain and body were totally dysregulated screaming DANGER! No we’re not doing this again.
Hadn’t we JUST done this? Doing the same thing expecting different results was hard to grasp at the time.
The honest truth was that I couldn’t imagine having to prove my life is worth saving like I had to last year.
I started to think about how I could avoid any of that. Maybe I don’t do surgery at all and I go my own way. Maybe I prove them wrong by doing something different.
My trauma was making this situation impossible to handle, but I couldn’t see this at the time.
I’m already stuck in fight or flight, but this was a new level of racing thought. Where can I go? What can I do? I need to find an integrative team or I’ll die. Who will understand? Is there even anyone who can safely help me?
If I can react from eating spinach, how can I trust that something like this will be feasible for me? No one gets it!
This is what my brain sounded like 24hrs a day. A constant loop.
What do I know to be true?…
I knew I needed a break, that’s what I felt deep within my soul. Before doing anything extreme or invasive, I HAD to recover and restore my flow.
The desperation I felt, well I was seriously considering crowd funding to go to an integrative centre that can cost over one hundred thousand dollars
The thought of doing THAT stressed me out even more. I have a hard enough time as it is asking for help. I couldn’t even imagine asking for help on that scale.
Do I even want to do that? Am I making these decisions for the right reasons?
I realized everything I was doing, moves I was making, my thoughts, it was all out of fear.
Fear can make us irrational, it clouds our judgment. PTSD mixed in there was a difficult combination to navigate.
I needed to find my peace.
I realized I was taking the wrong approach. Stress is the number one trigger for my conditions. Even if it’s with good intention, for example:
I was researching constantly. I was reading books on healing cancer all day. I started following a lot of healing accounts, knowing deep down their stories and experience will always be different from mine. Not caring that it was making me feel bad.
I felt I wasn’t doing enough but I couldn’t afford to do more.
Down the rabbit hole…
Every day I’d wake up and try to figure out how I can make my water cleaner. How I can detox safely. How I can make my food do the most for me. How I can move my lymphatic fluid.
What I really needed was to tap into my self compassion and give myself a loving chat as I would a dear friend.
The pressure I was putting on myself was not okay. I needed help and I didn’t know how or who to ask. I haven’t been able to afford to see my trauma coach since moving. So I tapped into what I had learned previously:
What’s in my control right now?
It was around this time I’d been accepted into a cancer wellness centre. A non profit that offers wellness activities and treatments for people living with cancer.
Each activity, each treatment, I could see things more clearly and was able to slow down.
I was able to view my situation more objectively, and see all the harshness when I needed the exact opposite.
I could see I shifted back into survival mode, and the hormones from my disease(s) were being triggered. I could see the impending doom symptom coming up.
My self awareness returned and I was able to tap into my self compassion.
I spent more time focusing on building myself up. Emphasis on the things I’m doing well. Making my body feel safe.
But I’ve gotten a little ahead of myself here, since I’ve been holding so much in it’s hard to explain perfectly in order
The biopsy…
I saw the only doctor I’d trust to take the sample. The one who diagnosed my cancer with molecular testing. Dr.P
Dr.P fought alongside me and my specialist to get me approved for surgery right away
I knew I’d doubt anyone else, and to be fair, with 3 false negative biopsies – why wouldn’t I be skeptical?
I was questioning even doing the biopsy. I felt like a human pin cushion. Angry that these tests pose such a risk to my mast cells. Having to deal with the degranulation spiral all by myself.
This ended up being another appointment with a lot of complex feelings…
I hadn’t seen dr.P since the molecular testing. He congratulated me and said without that test, I wouldn’t be here.
He said I AM the hero in my own story, and that my advocacy really did save my life. He said, “some people in life are just counted out, you’re just like rocky or sea biscuit” 😂
I explained my doubt with the biopsy since I had so many false results. Despite my trust in him, I’d been let down so many times.
I asked why it’s even necessary to do a biopsy since my tumor marker had shot up also. CLEARY indicating there’s cancer lingering.
You’ll always have cancer…
He explained that with the variant of thyroid cancer I have, that I’d always have cancer.
And because of that, having an elevated or changing tumor marker level isn’t surprising.
He explained that the new mass could be anything, even scar tissue. And that’s why we need to do a biopsy.
How can one doctor have such a different opinion than the other? 🚩 I’d been down this road before.
It was good to hear there’s a chance the thing in my neck may not be cancer…
But wait, had I just been told this cancer is incurable?
So I have two lifelong cancers now.
Adjusting my expectations…
I always say knowledge is power, the more we know, the better we can navigate. But that doesn’t mean it doesn’t suck. It sucks big time. Huge.
I had to sit with the difficult truths. I had to tap into what I’d learned from trauma healing, and apply it to myself.
Just because I adjust my expectation, doesn’t mean I can’t still expect little miracles 💫
I stopped putting so much pressure on myself to heal, and reminded myself that healing is different for every body.
I didn’t even l feel anxious to get the result. That’s when I knew…
she’s back baby
I felt a noticeable shift, like a weight lifted off of me. I felt like myself again
I felt capable and confident that no matter what was happening, I’d be ok
The call…
Unfortunately I’d missed my doctor when he called for results. He was on vacation but didn’t want me to have to wait. So he left a voicemail explaining,
In his opinion he’s not worried for now, it could be scar tissue or a small infection but we don’t know for sure.
That we will revisit it and make sure in about 4 months.
I’ll be honest, the type A in me doesn’t like not knowing EXACTLY what it is.
I don’t feel 100% at ease with it, but…
I’m relieved that the ticking time clock has quieted down in my mind.
What’s next?
This week I’ll be having another followup with my specialist.
It’s frustrating that I still won’t know a clear picture for the thyroid cancer. I am doing my last two scans this week.
This will finally tell us for the first time if it’s spread beyond what we knew.
But we will find out is whether the pheos are still stable, since all the results for that should be in.
We had to space them out more than usual because my body couldn’t take all of the dye and radioactive injections.
I was waiting to share until I had the full picture…
But I’m coming to terms with the fact that we often never get a full picture. We get small snapshots and that’s ok.
I’m left with a lot of uncertainty and absolutely no idea what’s next – but I am shifting my focus onto my 10 YEAR CANCERVERSARY.
Because I know for certain my 24 year old self was counted out before I even started writing my story. So now what?
Remembering who the f*ck I am.
Miranda AKA Pheo VS Fabulous
Pheo vs Fabulous 