It’s been 4 days since I got the call. You know the one? Where you weren’t quite expecting a life changing diagnosis – but then do? That call.
It went something like this,
“Hi miranda! How are you?”
“Hey, I’m good. How are you?”
“I’m well thanks, so it IS thyroid cancer”
“And it’s metastatic”
Fuck.
November 24th: I was informed there is a molecular sequence test that exists. That I need it, but the government won’t cover it because my tumor is already ‘TIRADS5’
Wednesday Dec 6th: marathon medical day. 15hrs of running from one hospital to another. More labs. More ultrasounds. Red flag red flag. Lymph node. Cystic. Emergency last minute referral sent to private surgical clinic. Pay to get Biopsies. Will have answers within 48hrs
Friday Dec 8th: metastatic thyroid cancer diagnosis
We’ll call this day 1. On day one, I’m numb, not part of my body, I’ve floated away once I heard those words. My rational brain is rattling off questions to ask but my dissociated body is floating away further.
All I see is red – I’m angry. So very angry. I ask the necessary questions, I’m seasoned, Miranda, you can do this, I need to know as much as possible.
I’m mad that this is possible. After all the tests, constant travel, the past 2 years of red flags, all the scans and evidence… HOW did we here?
Metastatic. All I see is red.
Saturday Dec 9th: Day 2. I don’t know how to make it make sense. I’ve gone over it every which way. I’ve reviewed my tests, connected the dots, the more sense I can make of it the less angry I’ll be. I can’t afford to be this angry. I need to be calm. Even. Composed. Clear. I need to fight for myself and I can’t do that if I’m too emotional.
My anger is valid, my anger will continue to keep me alive.
But right now, let’s rewind…
It was just a nodule
Until it wasn’t.
It all started with my unexplained tics and spasms. My throat being the worst. I had been seeing different ENTs and it led me to a random ultrasound and endoscopy.
In January 2022 I had my first scare. I was sent for a throat Botox consult… but everyone began reacting oddly to my ultrasound. We knew that look.
I contacted my endo via text, I asked why they were reacting. He checked it himself, not to worry it’s a weird mistake. Someone input the measurement of my nodule incorrectly.
We were relieved, life pushed along.
I go to the hospital to do different testing, forms of imaging, and endless labs on a monthly basis. I see the cancer centre, have a multi disciplinary team, it’s fine. It has to be.
It would be impossible to miss, and I’m in good hands.
But if I’m honest with myself, it never sat quite right with us.
“There’s bound to be one day you’ll be caught off guard”….
It had been 4-5 months since my last endocrinology appointment. I had been followed closer by the cancer centre, which if I’m honest – isn’t as intricate for someone with an endocrine cancer like mine. You get the scans and things you need done, but the delicate balance of labs aren’t the same. With a pheo, stable or not, you have to be ahead of the game at all times. Symptoms overlap, things get hard to interpret.
I remember an oncology resident was sent in to ask me preliminary questions one day. She said is there anything you’d like to discuss today? I brought up a cluster of lymph nodes shown on my scan. I specifically recall saying “if there’s something, I’d like to get ahead of it. I don’t want to be surprised like I’ve been in the past”
She responded, “well there’s bound to be one day you’ll be caught off guard. We can’t stay ahead of everything at all times”
Sitting there enraged, I replied “well this is not one of those times as I’m pointing out the information here and now. There IS a way to stay ahead of things, if a concern is taken seriously”
I remember going LIVE that night on Instagram and unpacking that appointment.
The biopsy…
I had my first surprise thyroid nodule biopsy August 2022, Every endocrinology appointment I show up with a huge list of things to discuss. I went silent as I heard the word ‘cancer’ again.
I wasn’t expecting that.
This was the first time thyroid cancer was ever mentioned as a possibility. The word was said, it made it real.
I lay there dissociated from my body, I go to my zen den, where I can find peace through the pain. I’d never had a biopsy before. Rule number 1 with pheos is you don’t biopsy, ever. Of course we did our due diligence to ensure it wasn’t a pheochromocytoma metastasis with extensive imaging first.
I could hear the crystallization of the ‘nodule’, the grinding sound so close to my face.
My doctor tells me how strong I am, serge firmly grips my hand, and I feel confident knowing I’m being cared for
I didn’t tell anyone about the biopsy. I felt so many feelings that were hard to interpret let alone explain to others
Was I overreacting? I’ve heard the word cancer before, I’ve outlived a terminal diagnosis, do I even deserve to react? Somehow it felt like because I already have cancer, I wasn’t allowed to react as if it was my first time hearing it.
I should be used to this.
I have been through worse.
Sharing is my release. It’s my way of shedding my body of the emotion, pain, shame, guilt, trauma, grief. The connection to you is what heals my heart and allows me to continue so openly.
Time stood still this time as I suddenly felt trapped with my unspoken words.
It’s benign…
We finally get the call, it’s benign!
But why don’t we feel fully at ease? We were warned biopsy can be inconclusive. In my overactive brain, if there was a need to do one, there’s still a risk. Can I just forget about it? No. But we know about it. It’s on their radar. It’ll be okay. I can’t dwell on this, there’s nothing more to do right now.
In retrospect, this would have been the perfect opportunity to get the thyroseq V3 molecular testing to determine if the nodule was in fact a nodule. You know, the test I had to fundraise for in order to finally get a confirmed diagnosis? So I could prove I needed surgery? I don’t know what grade the nodule was at this point, but if it was less than 5… we could have known much sooner
I can’t remember the date, but I did start to have an enlarged thyroid. It hurt. I attributed it to the constant tics and spasms I was having, causing inflammation from the grinding it was doing. All I knew is that it hurt, and I was annoyed with the constant uncontrolled movement disorder.
Moments like this, being a complex rare patient can distract from a simple problem or answer. It makes you see things differently, the zebra stripes become a distraction.
Life moves on, as it does…
I was called to do another ultrasound in November 2022, I remember thinking “oh”, why? I had a million other things to balance at the same time health-wise. I always celebrate my ‘stableversary’ in November, meaning the existing pheo cancer is behaving.
It became a new thing where I’d worry about it while it was happening, and relief when the all clear came.
I keep reassuring myself, “I’ve gotten over 3 imaging types in just 3 months. I am the most closely followed little zebra there is. We’d see it if there’s something serious”
You can’t allow worry to set in about something that isn’t there. They’d see it.
It’s fine. I said this to myself a lot, “it’s fine” “I’m fine” “everything’s fine” 🚩
When another ultrasound came in March 2023, a comfort and concern all at once. Why is it being followed closer? All of the scans and technology began to make me doubt. Can’t the technology we have rule it out 100%?
July 30th 2023: I started coughing on my food, triggering a mast cell response, and I went into anaphylaxis.
Fuck.
Why is my system getting so flared? What was causing the sudden shift? Just like before. No one made the immediate connection.
When you live with complex conditions, they’re often thought of separately. Symptoms get blamed on the wrong thing. It’s a puzzle.
July 31st 2023: this was my big follow up with my specialist. I’d get results for my thyroid, and be notified of any changes within the stable metastatic pheochromocytoma. I was relieved and dreading this appointment because I’d just been through biochemical hell the previous day. I was fragile, and still had to be careful so my body didn’t kick back into anaphylaxis from the stress
“A tiny new met on the retroperitoneal wall, we can probably can just ablate it”
“This one may be a spinal tumor but we will get a scan and rule that out”
What. The. Fuck.
How can I focus? Forget the thyroid, forget the not being able to breathe one day before, WHAT about my spine?!
You really can’t make this shit up.
I don’t think anyone could truly understand the magnitude of pressure I was feeling at the time
Even me.
Did I mention Serge was being investigated for a rare NET tumor like mine? Yes. It is simply unbelievable.
August 14th 2023: I couldn’t breathe again. I am in so much pain. Nothing is helping. My healing efforts and routine futile. I am becoming less mobile.
What is going on?!!
August became a living hell. My thoughts were shifting. My mind did not feel like my own. It felt tired and worn down but…. seeing as though I’ve lived with a hormone secreting cancer for years, it felt more like a hormone altering my coping ability and views
I didn’t feel like myself. I grew more restless each day. I convinced myself it was the stress of my life causing it.
My sleeping routine was suffering, my energy levels were depleted, and I couldn’t tell what was causing what.
Emotional stress does manifest as physical symptoms, I believe that.
However, that belief can cloud the judgement of what’s a physical condition on its own. Like for me.
New Symptoms…
My stomach was so tight to where I could not take a deep breath, I had tremors that made me drop my water glass, heart palpitations were in full swing, savage sweating episodes were coming in hot.
So uncomfortable…
The constant travel back and fourth to get care. I am not okay.
August 31st 2023: this ultra difficult month is ending with a phone call from my specialist. I explained my new symptoms, he believes my thyroid hormone is the cause. Another day of travel…
I can’t afford to but can’t afford not to
September 3rd 2023: our sweet baby angel Christopher crossed the rainbow bridge. The grief I felt after losing our 13 year bond was overwhelming, and my body could not even let me have that.
That’s the thing when your body reacts to stress, you can’t kick and scream, you can’t cry till you’re red, you have to remain composed. I cannot afford myself to feel too deeply since I have no release that is safe.
It is the most unfair feeling I’ve felt. The anger that comes with it is unlike anything you could experience.
I didn’t care. Christopher deserved to be grieved. I finished my shower and had welts of hives everywhere. I was congested and flushed for days, but it was worth it.
I didn’t get a further minute to grieve him, because each new phone call I received was a blow to the gut.
My labs discovered high thyroid hormone. But… I was hypothyroid for 7 years. What would cause that sudden shift?
I’d need a more thorough investigation, and to start a different medication to suppress the hormone. I was so uncomfortable I would try anything. I was tired of waking serge up at 4am to go for ‘restless leg walks’
On day 8 I began to see an improvement in my symptoms, my labs had evened out, and I felt hopeful.
I had to do an intensive week of testing, it looked a bit like this:
Day 1: iodine nuclear test (take the pill)
Day 2: iodine nuclear test imaging to see what lights up. The nuclear doctor met with me right after and diagnosed me with Graves’ disease. Thyroid is super inflamed. Didn’t rule out cancer, but DID get a fun new diagnosis to add to the list (Sarcasm)
Day 3: another biopsy, 🤦🏼♀️ and our 13 year wedding anniversary. It would be hard NOT to laugh at this point.
Day 4: spinal MRI to take care of previously mentioned unknown mass
Day 5: final labs, results, and long drive home. My endo said verbatim “every cell in your body is on fire” I was in full thyroid storm, my levels were aggressively swinging, and my body was FEELING IT.
No wonder why my MCAS was being so aggravated back in July/august?!!
It’s always blamed on the pheo. But the pheo is just chilling, stable mable.
Day 5: all I was focused on was getting out of that storm. I was physically unable to do anything but trapped in a constant state of restless torture
It’s like my brain blocked out there had ever been a talk of cancer risk.
Biopsy results…
Another unclear answer. I was told the risk level increased, but the results were still indeterminate. Great.
I’d need a THIRD biopsy, and at this point my endo had told me to be prepared for surgery. He’d told me several times, for at least 3 months at this point. It was always his opinion that even if it’s only graves it should be operated on.
The third biopsy…
I wasn’t scared anymore. The surgeon selected was experienced and swift. It didn’t hurt and we even laughed through the appointment. At this point, he didn’t want to do another biopsy, but he asked me if I wanted to and I said absolutely yes. My endo wouldn’t have sent me if I didn’t need it.
This was the first time when I saw the opinions could be vastly different…
Not unusual per se, different specialities can have different views
But something was rubbing me wrong
The statistics the surgeon gave me were LOW and he was insisting I did NOT need surgery in any capacity and
“No one wants to operate on a graves inflamed thyroid, it’s bloody and gross and increase the risk of cutting the vocal chords by 50%”
To be fair, he wasn’t seeing cancer. He was seeing that I’m a complex patient, much higher risk for surgery, without a definitive diagnosis. Three biopsies that gave us nothing, and an enlarged graves thyroid. Not ideal.
But…I mean…??? Why am I here then?
It wasn’t adding up. I’d felt this feeling before. I shoved it down. No, it can’t be that. I’m stable. He wouldn’t judge based on my existing diagnosis. It’s an unrelated matter. Focus on what you know. He said you didn’t need surgery, just be happy.
But it didn’t sit right. I knew.
My specialist followed up to ask how the appointment went. I told him the news about not needing surgery, I could feel the tone shift. Ever so slightly.
4am Fridays…
At this point I’m doing labs every week. 4AM Fridays I call them. 6 hour drives to monitor my thyroid levels every single week. I was beyond fed up, but we do what we need to do. And we stay fabulous while doing it
Finally, the tumor board met and discussed the situation. Despite the insistence from my team of the need for surgery, I was refused.
I didn’t even know this was possible. Put a pin in that 📌
I was then told my only option is to get a molecular sequence test to irrefutably prove I need surgery. I was told in the same breath the government will refuse coverage to the molecular sequence test since I don’t meet the criteria.
“What’s the criteria?”
The tumor would have to be a grade 4 or less, yours is a grade 5.
Double wham.
Which leads me to why I reiterated this timeline. I am asking myself how the ‘tumor’ could have gotten to a grade 5… when it’s been followed for 2 YEARS
Where did it go wrong? Did they just… was I…
If you know my history: misdiagnosis, negligence and medical trauma, you can understand how processing this information was especially difficult.
No one should have to fight this hard
My only option was to pay out of pocket to get the molecular testing. With over 90% accuracy rate it would hopefully give a clear answer. It also has the capability of sequencing 156 genes and would tell us everything we need to know for what steps would be best AFTER surgery.
Grade 5 means the tumor characteristics fall within a high risk level for malignancy based on a radiology formula. The reason it’s not covered by government is because they recommend surgery since the risk of malignancy falls around 85%
I had to fundraise the cost for all of this in order to just START fighting.
Why was this test not offered to me sooner? Why did I get so many tests and exhaust my system if the results didn’t matter? Why did I have to endure so much stress and pain just to be DENIED care?
I talk all the time that self advocacy saves lives. That we are more than a diagnosis: that pheo can’t take away your fabulous. I do this because I know these things can happen.
I think I somehow believed that by surviving the odds I was not going to experience this medical bias again
If i was careful to appear…
healthy enough
and alive enough
and well dressed enough
and well spoken enough
and intelligent enough
and beautiful enough
and established enough
and published enough
But also not TOO much alive that I’d be dismissed altogether
But not TOO well dressed that my needs and pain would be minimized
But not TOO well spoken to where I’ll offend
But not TOO intelligent to where I’ll be seen as a threat
But not TOO beautiful incase they say I appear fine and not help me
But not TOO established to where my disability is questioned
But not TOO many articles incase I’m seen as too rare or complex
We shouldn’t have to convince anyone we are worthy of saving…
The truth is anyone can experience a medical bias, misdiagnosis, gaslighting, negligence or trauma.
You can be any age, any race, any socioeconomic status, any gender, etc. This can happen to anyone, and as I’ve shown, can happen over and over despite everyone’s best efforts
We should not have to play these mental gymnastics in order to receive the appropriate basic care.
I know my team will fight for me. I know we will not stop fighting for me.
But I couldn’t glaze over this part where my diagnosis was louder than me. Offering me less…
So now, I will keep doing what I’ve always done, which is reminding you and me over and over
we are more than a diagnosis.
nothing can take away who you are.
we deserve to thrive.
your prognosis does not dictate the way you live.
no one can take away your fabulous.
self advocacy saves lives.
you are your own damn superhero.
don’t let anyone make you forget who you are.
I am writing this Sunday November 26th 2023. To remind my future self of how far I’ve come. Once I fight for another diagnosis, and get the surgery I need. I will then revisit this, and I will share how we got here.
Right now I am feeling we can do all the right things and this can still happen, but I will prove that wrong.
In true pheo vs fabulous fashion, I am writing my story as it’s being lived. Plot twist. I didn’t accept this ending.
Don’t they know I’m the main character of this story?
01/30/2023 We did it fam. I knew we would. Head over to the my newest page to keep reading about the thyroid surgery
Pheo vs Fabulous 