And we leave for round 3 – PRRT

After having said all I have to say in my last Post, gotten that off my chest… everything I’ve been feeling over the past few days…

we are here. At the hospital that will give me my third round of my clinical trial – PRRT 

We travelled yesterday several hours into the night to eventually arrive to the hospital that will eventually administer the experimental liquids that maybe or maybe will not help me diminish some of this pain I’ve been feeling. Maybe it will do nothing. Perhaps it will make me worse. I don’t know.

What I do know is that I was absolutely terrified the last few days, thinking about just driving here and adding to my state of pain, and then actually having to endure treatment?! HA!

of course then having to even consider the next few months…. ugh, my worsening body, and the NEXT round. I just can’t.

I’m not one to cry but it hurts so much lately, kidney stones, complications, the attacks, everything seems to compile at once and just want to break you down.

💊💉🏥😷😭

Well I am broken, but I’m still going to take whatever pieces of me are left and fight this awful cancer and get this Treatment done, that’s why they call it ROUND 3 – they’re throwing me in the ring with some help… well i always win. I always win. I always win. 

🙏🏼👊🏼

To my person,
my eyes reflect the longing for the moments we should have had together and will never see, but love for the time spent together everyday, yet I feel such pain when you cherish the simplicity in our mundane routine, and even more pain when I know that you feel everything I feel.

I love you more than words can ever share, and I wish to go with you as many places as we were ever intended to go, with me in a state where I can enjoy it – this can’t be it. This pain cannot be it.

But if it is… my gift to you is that you were the only one who truly saw what this disease did to me throughout this whole time. The relentless pain of this 24/7 psychological and physical warfare, you’re my number one first. Before anything else, you’re the one who I fight for and dig deep to find my last smile for each time, because you’re the one who’s always there making me laugh.

So if it ends up that this it, things don’t go our way and I’m still in so much pain – just know that I will dig deep and find my smile for you baby.

like you say… we’re going through something so beautiful, when do you ever get to experience this?
💞✨🙏🏼

To my beautiful wife,
We have done allot…
But I had so much more I would of loved to do. Just spending time with you is allready a gift. And one day we will do lots. So let’s go get you in to shape. Quebec here we come. I am bringing you my most precious diamond it’s a bit of a diamond in the rough health wise so please polish it up verry well so I can take her all around the world and show how priceless she is.
💗💗💗

I love you baby!!!

PHEO VS FABULOUS

 

Facetune

I really need your help…Rare Disease Day

I’m dying

but you already knew that – I just had to grab your attention

The number one complaint you will hear from patients who suffered from being misdiagnosed or being undiagnosed is that nobody listened to them

Why?

Because they were “too rare” 

These are the people who then had to hear these words, the diagnosis that shattered their entire world… Just much too late for it to count …

There’s no cure, we can only manage the symptoms and pain ”

“With the limited information we have.. People live for about 1-5 years” 

“it’s 1 in 5 million once it spreads, I’ve never seen it personally, you’re very rare!” 



It’s Rare Disease Day

I thought that I would offer a different perspective – one that could explain what this day means better than anyone, and why it’s so important to share this message.

Today is rare disease day, they call them zebras. 
Zebras are the last diseases that doctors look for. The obvious ones are called Horses, those are the ones the Doctors are used too. So they get to cure those on time.

I have a Zebra at home so it’s the one the doctors didn’t catch in time. She is my beautiful wife 26 years old she is what we call paleative.

My wish is that the doctors would of listened when she was telling them that her illness was back and did proper testing instead of blaming it on anxiety, it would of been treatable she would of had 1 thumor instead of 16 impossible to treat.

So please doctors I beg you to listen to your Zebras when they say they know their illness is back and don’t look at the ‘Horse’ if they are Zebras. Continue on treating them like Zebras.

If you have a Zebra in your family fight for them don’t let the doctors see them as Horses.

I’m very happy of how I’ve taken care of you since you were diagnosed butt I really regret the way I did not react before. If I would of known better it would of been different. I know it’s not just my fault but I still carry with me a lot of blame, I always think if I had known more back then I would have fought harder for you, if I just would have known there were more tests, I trusted in them and I shouldn’t have. I would have never taken no for an answer, we just didn’t know what more to do. We didn’t know what to research for, we didn’t know we had to. And I’m so Sorry baby😪

Now we are doing everything we didn’t know how to do back then, and it’s helping others. I’m so proud of you. You will help so many other people not feel the way we did that day. I love you so much!!

Thank you for reading!!!

This is what it’s all about, to hopefully help rare diseases like mine (pheochromocytoma) cancer become less of an unknown disease to all involved. Eventually making these misdiagnoses, and undiagnosed patients less of a problem.

Help us become less rare.

Help keep sharing the information. 

Every day I struggle through my pain to write any little detail so that there will finally be information available – any information available to others about this rare disease. Explain what it is to participate in treatments, procedures, and rare trials real time…I patiently repeat myself as I explain what pheochromocytoma is over and over again to anyone and everyone.

All I ask is that you share my message further, just SHARE!

I have one common goal in mind… help make this disease less painful for the next person. Make this disease less of a struggle for the next family, less of a mystery for the next patient, more information available to the next medical team, and hopefully…

Whatever they can do to give us with more time, and better quality of life.

I know there’s no cure, but it would be really nice to not suffer so much while we’re waiting.

There’s one single day for thousands of rare diseases to become less rare and get the awareness, funding, and exposure they are looking for – all crammed into one 24 hour period. Why is that? 


Are we less important than someone who has a different disease? Am I dying any differently? 

This is why I need your help, today and everyday… but ESPECIALLY today, let’s make today count for all of us zebras.

Let’s make our February 28th 2017 Rare Disease Day worth it!

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Share to become less rare !

Pheo VS Fabulous

#pheovsfabulous

 

 

 

 

 

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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There’s always a reason to smile

With so many awful things to worry about, feel, and experience… Cancer gives you two options: succumb to it’s misery and pain, and let yourself be one with it physically and mentally, or… Allow yourself to feel the inevitable pain and misery, be honest about the trials it imposes upon your life, and still find a reason to smile every single day… because let’s put this differently, with so many awful things to worry about, why NOT smile?

If you are still able to see the beauty amongst all that pain, that is a smile worth having.

It’s been 16 days since I did MIBG radioactive therapy (read link here) – It is definitely still an imposition, and I certainly can go on and on about my struggles, but instead I’m just going to focus on today – with no expectations, and just keep smiling my way through it for now.

Today I will get a look at how my body is performing after my high dose of MIBG radioactive therapy, and make sure I’m not in any imminent danger, we like knowing I’m safe and sound and my tumors aren’t going to do anything sneaky. You never know… Since the surprise attack we initiated on them, they can be very vindictive.

So happy world cancer day my friends ✌🏼️💜

Smile & Stay Fab

pheo VS fabulous 💖

#mirandastrong

#pheovsfabulous

Instagram: @mirandasimard

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