I said I would never do that again 😭

But I learned something new again yesterday

these bodies we think are ours?

They’re not.

We think they own them, we signed them over the moment we agreed to save our selves from the disease that’s killing us every day, see how that works?

Cancer: you get to kill me.

Doctors: you get to save me by any means necessary

Me: I TECHNICALLY have a say… but…

Believe me, there is ALWAYS a but

If you start saying no to things, how can they save you by any means necessary?

Anyone can go on from the outside and say there’s always a choice etc etc, and yes there absolutely is. We always have choices, mine often look something like this:

your veins aren’t working for the 189th time in your life, let’s rush you off to a secret room after after having poked you 7 times – and we will surprise you with a procedure you swore you would NEVER.EVER.EVER do Again – (text here)  I wrote about in previous times to GREAT lengths because it caused you such trauma the last therapy during MIBG (and out of all the things you’ve had done.. that’s saying a lot), just the mention of it is traumatic. 

My words aren’t coming out, no one is listening to me. What good would it do anyways? It’s now my only alternative to receive the treatment I’m here for. 

Ever wonder why the term cancer sucks is so popular? Why so many people want to say fuck cancer? ….

this is why. 

It’s because of situations like this, when you are no longer a person, when you no longer have a say in your own body in order to save yourself.. because you know that you’re damned if you do and you’re damned if you don’t. 



Facetune

Part 1: 05/23/2017 – PRRT treatment prep

jugular insertion 



Facetune

But I’m tired now

Facetune

I’ll leave you with something good, as I always do… I was greeted with my Doctor cupcakes (my husband), after some kisses 💋, and pain control, I was ready to start my treatment in a little less agony.

(My clinical trial doctor) is amazing, and does everything to administer the treatment in a comfortable fashion.

The treatment itself was a bit improved VS the last few times.

More on that later once I’m not so traumatized from the morning, and tired & in pain.

FABULLLLUS IS EXHAUSTED. 🖐🏼🏥

more fun trial stuff soon, byeeeeee

#pheovsfabulous

Round 2 -Clinical Trial

It’s that time again…

Trying to figure out how we will pack all of my comforts into a couple of bags, and how we will leave behind everything important to me in my life.

Secretly wondering in the back of my mind… Will I return?

Catching glimpses at one another, knowing we’re thinking the same thing. Instead, distracting ourselves by packing those couple of bags… hating that it’s ‘that’ time again. 

 

It’s been a really tough couple of months, since the first treatment.

Specifically the last couple of weeks have been especially hard. I don’t know why, and we have not been able to figure it out. Going into treatment in this condition? Not the most comforting feeling, I’ve never went into a treatment feeling physically inadequate, this will be a first. I’ve never went into a procedure with a mystery looming over me, wondering…

“What’s wrong with me?”

“Why do I feel like this?”

It’s different. 

We’re close to leaving now, I can hear Serge packing the last few things in the truck, the dogs nervous feet scampering around, so many hours ahead of us to go…

Treatment will be administered on Tuesday, and then all of the protocols will be followed the rest of the week, scans, scans, and more extremely long and painfully still scans. Putting us leaving around Saturday a week later.

This is what I know for now, I am still gathering information for my longer informative post about PRRT. I figured since I’m doing the second round maybe it’s best I wait. Also, I just haven’t felt well enough to write anything remotely informative 😂🤓 that requires brain power = brain shut down= eyes go bye bye.

Okay, time for me to get dressed, and that includes putting my smile on. It’s time for a ROAD TRIP!!! 😁

Talk to y’all later 😝👻💀💩☠

Pheo VS Fabulous

XOX

 

 

I am rare – Rare Disease Day

Although I would like to think that I use every day as an opportunity to make this disease a little more exposed, february 29th 2016 is rare disease day.

A day to remind the world that although rare… diseases like mine do in fact exist, and because they are rare, they don’t get any attention, and as a result – we suffer.

We suffer through misdiagnosis, delayed diagnosis, and lack of information when dealing with our rare conditions. We suffer through painful surgeries, lack of treatment options, and invasive trials, with no cure in the end. We suffer in silence.

February 29th is our day to make our voices heard, help me get a little bit louder.

I have pheochromocytoma cancer, adrenal insufficiency, I’m 25 years old, and I am rare.

Rare disease day, 2016

#mirandastrong #pheochromocytoma #netcancer #ai #zebra #rarediseaseday #pheovsfabulous

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MIBG Therapy – it’s here

Therapy, treatment, normally implies some sort of relief right? Well let’s hope so, because I don’t think it sounds very therapeutic, but what do I know… 😂

Today is the day!

Its 6:41am and I’m about to go have a fight with the shower, be assaulted by my tumors for a good hour, and then once all at calms down… Think about leaving for the hospital for admissions, yesssss honey! It’s a glamarous life 😜

‘Mibg’ radioactive therapy should start to be administered around noon.. I have no idea what to expect… We are anticipating my body to not cooperating during the injection, it’s just a fact that the tumors are going to uptake the radioactive isotopes, and they’re going to essentially explode their adrenaline, leavin me littered with the aftermath, this is the part where they have to be extremely careful to balance with medications to protect my heart and so on! Yikes 😬

I got the greatest gift of all yesterday, because of the kindness and generosity of so many … Serge is able to stay 10 minutes away while these complications arise, being right there, VS being 3.5 hours away.. He is literally my husband and yet my caregiver, and it’s hard enough being isolated during this whole event, and several days after, knowing he is there if something goes wrong… is the best gift anyone could have given me.

gofundme.com/a7k4rbek

Yesterday was one of the most difficult days of my life, but my heart was full of warmth and happiness because of every single one of you reaching out to me… Today you will be with me in my heart 💖 Getting me through each step, until I can update again! We love you all so very much, merci and thank you for your continued support in my journey 🏩

I must be off for now, tata my loves!

See you after I’m radioactive and a little less pleasant … 😈💖

Pheo VS Fabulous

And so it begins..

It’s here, that inevitable day has come.. The one I leave my warm comfortable bed at home once again, and will travel to my ‘super hospital’ in Montreal, and receive MIBG radiotherapy…

Tomorrow the actual process starts, but of course we have to leave a day in advance in order to be there, get admitted, be ready in the morning and make sure my body doesn’t have to endure TOO much stress and travel time before the actual procedure – as it’ll be dangerous enough to administer the treatment… Eeeeek! Okay. Getting a little nervous, understandably, when I did my surgery… It was basically – that was my only option for a real chance, when I still woke up with the unfortunate news that there was disease left in me and of course that disease had multiplied within just months …. You can understand  our thoughts when it comes to this. I’m a  realist, I know there’s no cure to this disease, but it would be REALLY lovely to not have these tumors adrenaline attack me every couple hours… And feel like I’m in a war zone with my own body, and waiting to die every minute of the day. I’m not asking for a lot, just a bit of relief, a little less pain, a little less symptoms, some better quality of life.. That way I can focus on being a little more fab for a while, help some others along my way, and perhaps take a small break from this constant battle? Here’s to hoping.

We must get through the hard part first, administering the treatment which will wake up all of the tumors… Sending all of the adrenaline into my body at once, while I’m awake, (amazing) being incredibly sick, potentially wiping out my bone marrow, monitoring my adrenal insuffiency as I’m going to always be going into adrenal crisis with the stress my body will endure, being locked away in isolation as I will be radioactive until further notice, and then hopefully… With time and lots of positive energy, we will hope I will come out free of a few friends, and a little more fabulous 😉💗

you can read about the special treatment Here

what I had to do to prepare 😖 Here

Pheo VS Fabulous

#mirandastrong

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