Pheo VS Fabulous – Welcome!

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“Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” – Pheo VS Fabulous

My mission statement for this journey was to stay fabulous, never let it take this disease that away from me, and to find the good in every situation. Well, I can lose many pieces of me before anyone takes my ‘Fabulous’. 

Hello my fabulous friends,

This is my very first post, my first time writing a blog, and my first time speaking freely about my personal journey with pheochromocytoma cancer…. and staying fabulous while doing it!

Pheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and I’ve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when you’re battling an illness like pheochromocytoma cancer, that’s when I decided I wouldn’t let it that away from me. It’s more than just looking a certain way, it’s about BEING fabulous, strong, and positive when you have every reason not to be.

The danger of something being so rare is that it goes undetected, unrecognized, and is one of the most misdiagnosed conditions. Leaving many of us undiagnosed, and looking for answers.

If you’re reading this, you might still be looking for some…

My goal is through sharing my vulnerabilities with all of you, finding the courage to share something so painfully personal, someone else may have less of a challenge in the future of being diagnosed, treated, and living with this disease, #pheochromocytoma – or any other ‘neuroendocrine cancers. #netcancer  #raredisease

The idea is that the more I share, the more information there will be available for a disease where this is so much lacking. Every procedure, every test, every treatment I suffer through – I will continue to share my experiences so that others don’t have to keep grasping for answers like I did.

Although there is so much to cover… first off, pheo-chromo-cy-whatta?! We will get there darlings, I just want to say…

This blog is meant for awareness:

Awareness for a disease that only a handful of people in this massive universe know about, probably only because they were diagnosed

Awareness for a disease that affects only 1 in 1million people

and once it’s metastatic? 1 in 4.3 million

– Lucky us! 😉

Awareness for a disease that I am fighting everyday, that most people cannot even pronounce

I wish to share my journey, even the uncensored version, with all of you.

Even though I am absolutely fabulous (duh)… what I’m up against sure isn’t!

I will continue to fight this rare cancer, keep sharing my message on behalf of my fellow zebras, and no matter what happens I am going to stay absolutely fabulous while doing it!

pheo VS fabulous

Along with new and updated blog posts, you can find more permanent information in the ‘Menu’ drop down 

Stay tuned…

I encourage anyone who wants to support me by using the following hashtags in spreading awareness

#pheovsfabulous #pheochromocytoma #mirandastrong

Instagram: mirandasimard

Facebook: Miranda Simard

Create your own Fabulous

Instead of running around for last minute gifts, decorating the tree, attending fabulous parties…

The tradition we have manufactured the last three years is driving through snow storms hours away, telling each other everything will be okay, waiting for treatments that will dominate the rest of our year to come… and hoping the magic of Christmas will just somehow make everything better.

Each year I watch the first snow and it’s my symbol of hope…

I imagine that snow falling on me and just washing away everything I’ve been through in the previous year, starting anew.

Each year I wait for Christmas to allow those new beginnings; a new chance for me to heal, be in less pain, for my husband to suffer a little less.

…Back to reality

Like clockwork, my cancer always progresses to its worst state in the months following up to the end of the year, until I can’t take it anymore, and we are forced to take action. Most likely because I’ve done treatment all year long, and it’s my body’s way of saying enough is enough … or hey, why did we stop?

Either way

All of the tests, pain, investigations, right before Christmas.

“Do I really have to travel now? we’re days away!”
“We also need to know what’s wrong with you, and we’re not taking any chances, your condition has been too bad lately”
“I know. It’s just so frustrating how this happens every year”

True. I’ve felt awful as of late. Actually, Awful can’t sum up how I’ve felt.

This year is a little different…

I’ve done a year of (P.R.R.T) treatment that’s made my cancer worse.

That was a hard one. ⬅️

This IS the time to go and figure out what to do, where to go from here, there could be NO options for me, but I simply don’t believe in that 💫🙃

…There’s so many quotes out there

“Create your own happiness”

“Be your own sunshine”…

Well, I say Create your own Fabulous.

There’s ALWAYS something else, the question that always remains… are YOU willing to fight?

The answer is always yes.

The days leading up to my appointment…

I made a choice; my body had been fighting me hard, new chest pains, breathing trouble, my tumors alternating between pain crisis and adrenaline outbursts every hour.

….I was done

Which led me to my choice, do I abandon who I am, use the one opportunity I have to leave my house in weeks and go out looking as shitty as I FEEL?

Why should my outside match my insides?

Do I say F you Pheo and try and feel like my normal self as much as I know how? As much as every part of my body is telling me I can’t, what’s the point, just go like you are, it doesn’t matter.

The ‘normal’ me that brightens up those cold white walls, the me that regardless of the dark cold stormy weather, I bring that sunshine, the me that laughs off anything because I’m ready for everything?!

THAT is MY cancer.

Being prepared for just about anything..

Being fabulous despite the odds

I created.my own.fabulous

Why?

Because morale is everything.

Cancer is still going to be there despite the way I look, but it makes me FEEL a heck of a lot better when I don’t look like I have cancer 💋

So the next time you’re dreading those cold white walls surrounding you, you’re anxious for that inevitable news, you don’t want to get that scan…

  • Don’t take that extra hour of sleep
  • put on that darker shade of lipstick
  • curl your hair
  • throw on a bit of mascara
  • gurrrl contour and bake that face if you feel up to it

Go all out! 😂✨💖

I didn’t forget about my guys!
  • Give yourself a nice shave
  • wear that new dress shirt you were saving
  • gel your hair
  • put on a light (hospital friendly) cologne 😅

Do whatever it is that makes YOU have a bit of extra confidence & less sicky feeling 😉😷❤️

Most importantly, remember….

“Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” – Pheo VS Fabulous

Are you guys following my new FACEBOOK and INSTAGRAM?! 🙏🏼💖✨💄➡️👤 FB: Link ➡️📸 Insta: Link @mirandasimard

Merry Christmas my loves ❤️

This is Cancer.

How do you tell the ones you love… something you can’t begin to explain yourself”

I moved into my dream home 22 days ago

Twenty two days of contemplation and careful thought of how I was going to share this, or whether or not I would. I’ve always said I would share the good, the bad, and the fab.

I thought I would have so much to celebrate with my move, my clinical trial finishing… so many triumphs.

…But Cancer doesn’t work that way.

I couldn’t write this.

I want you to see what we live through in between treatments, not just during, I want you to see the hope, the pain… the before, middle, the after.

This is why Pheo VS Fabulous exists.

 

 

Please watch the full video 🎥
Pheo VS Fabulous has reached so many people around the world, my dream is it will continue to do so. 🌎 Please keep sharing, keep following, each time you do it’s one more person who is diagnosed sooner, or who finds hope 💫

I never want anyone to have to feel what I feel – Pheo vs Fabulous

To get a dose of my fabulous side …

Follow my Facebook & Instagram❗️✨

Instagram 📸 @pheovsfabulous

👤 Facebook

Time Limit…

Today was D-day, October Tenth.

A day we’ll never forget, but have no desire to remember.

Diagnosis Day. The day I was just days away from celebrating my 24th birthday and told I would only celebrate maximum 1-5 more.
The day my husband was told he would no longer have a wife, the day our lives would turn upside down… and never turned back around.

I’ll be celebrating my 27th birthday in one week, year 3 

Time… 

I wrote this a year and a half ago, I’ve been through a life of treatments, clinical trials, so much more pain, chemo injections, my body has been through so many emergencies… but we’re still here, and we’re not fighting cancer.

We’re living with cancer, every day, every moment.

We’re doing it fabulously.

You haven’t seen me around because that’s exactly what I’m trying to do, live.

I said I wouldn’t live with death hanging over me, I don’t, not most days – my goal was to help as many people as I can with this disease. That’s what Pheo VS Fabulous does, it provides information where there isn’t any, and I’ve been able to meet so many incredible people and help find the tools or advocate for a diagnosis.

This is what gives me joy, fulfillment, and no bucket list item could ever feel better than someone letting me know that my blog has helped them in some way come to a diagnosis after struggling to figure out what’s wrong with them after so many months/years/etc… you have NO idea what that means to me! ❤

So what I’ve realized is, even if I can’t take a shower by myself, or climb that flight of stairs… if I can help change a life or just make a little impact – I have to be pretty grateful for what I’m doing with my time, even if I don’t have a lot of it.. even if I feel sometimes I’m restricted due to my condition, there’s so much you can do without even knowing it!

I waited until the end of this day to share because today is still an emotional day, but I did want to share something with all of my fab friends.. & just say Thank You for continuing to be with me on this journey – hopefully I’ll be around a LOT longer!

Love you all so very much,

Pheo VS Fabulous

Read below, (time limit)

Source: Time Limit…

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

4th..5th time? I’ve lost count! IS a charm 💛✨

There are two things this disease has made me become an expert with:

learning how to be okay with never leaving your little comfy space (or rather being confined to it). 

or

constantly leaving that comfort zone you’ve been confined to for the purpose of being EVERYTHING but comfortable. 

Luckily I’ve acquired the most important lesson of my own, & that was to stay fabulous no matter what. Have YOU guys figured out the meaning of ‘Staying Fabulous’ yet?

This past year my health has declined significantly despite doing the most treatments packed into one time frame ever. 

With that said, my wardrobe mostly consists of comfy pyjamas, my hair is done by my husband (bless his heart). Speaking of hair, let’s be real… I can’t even wash my own hair, there I go again painting a whole different picture for you guys. I have care almost every day, and a lot of things I’m unable to do. Fabulous means SO many different things, but I still haven’t lost my fabulous, even if I’ve lost my ability to do all of these things by myself.

When I choose to do my makeup it takes me sometimes close to 5 hours or more, but I don’t mind because it’s every couple of months or so – and it makes me SO happy! Despite what I share in photos, we create a picture to make others happy as well.

What matters is the love, the laughter, the same outlook I’ve promised to have from the beginning hasn’t changed.

My message is being delivered with the same sparkle (most days)  ☺️✨ because that’s what PHEO VS FABULOUS is all about.

Regardless of everything that we have been going through to make it here, we’re here, and we feel just as grateful as ever.

When we were challenged, we leaned on each other for the support we so badly needed.

We felt so blessed for the support we constantly receive.

It isn’t in me to give up, the only thing to do now is move forward. To unfortunately just keep receiving another treatment and see what’s next.


What IS next you ask? 

Remember option 1 or 2? Well, today is # 2. Actually this week is a bit of both… except today is …

leaving the spot I’m most comfortable in. (You know, normally I’m confined to my house)

AND, this week is being confined to a space … but unfortunately not the space I’m most comfortable in, quite the opposite actually – I wouldn’t call the hospital or a radiation room my comfort zone. 🏥☠️

BUT that’s the life of being terminally ill 😷 treatments, clinical trials, being radioactive, a girls gotta do what a girls gotta do! ✌🏼🏥👸🏻

After all that jazz I will be laying in the big spaceship scans later in the week… pretending I’m getting a facial in my Dream bungalow house in the trees that has NO stairs, one of those swim spa pools where my poor body can float all year round, and a little all year round sunroom for my puppies & me to relax when I’m feeling down  🏡 sounds wonderful right? My mind is escaping there already. 

Dreaming, dreaming, dreaming ✨✨✨

Ok, time to glow friends 👋🏽😄

Tuesday is the actual day for treatment, PS 🏥☢️ In case you guys forgot what treatment it is, it’s the PRRT clinical trial  – this will be my fourth round.

(Which also happens to be serge and my 7 year anniversary 😑, which also happens to somehow ALWAYS be spent in the hospital 😪😭)

Bye everybody!

🛣🚘

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Reminding You…

I often say that I don’t feel I’m fighting cancer; I live with cancer. What I fight for is the ability to continuously mend myself back to health, piece by piece, taking back what this disease has stolen from me.
Exactly one year ago I wrote this article, it was after what I thought would be the most difficult procedure I would have to endure on my journey with this cancer, and the most suffering I would have to feel.
I was wrong.
I will continue to be wrong, and that’s what this article is about.
It’s a true testament to mine and many others real experiences; how we will continuously have to feel what we thought was the worst pain of our lives, yet wake up and do it all over again – only to be even more painful the next time, and the next time after that… but we will have to find a way to keep going, to WANT to keep going.

You can typically tell how sick I am with my level of activity, (I’ve been MIA) I haven’t been feeling too well lately.

My health has been ‘declining’ as the title says, and I’ve been physically suffering more than ever. 

Who knew my own words would bring ME a bit of comfort a year later after all of these treatments and just a year later?

I truly hope they are doing the same for you as well. 

I just wanted to remind everyone that no matter how hard it gets, these reminders are why you fight so hard.

I’d like to think that some day, I will be in less pain and get my own bit of happiness I’ve been dreaming about so much…but at the very least

I hope I can say I’ve made an impact

Pheo VS Fabulous