The Perfect Storm

Having a neuroendocrine tumor is complicated, we hear this all the time.

I’d like to break down a few topics that are well.. yes, complicated.. but can be better understood in order for us to enjoy a better quality of life.

Before I explain where I’m going, let me tell you where this all began…

It all started when I was hospitalized for 2 whole months, one of the symptoms I was having was extreme facial flushing. I was literally roasting like a turkey. My skin was peeling off, I was so uncomfortable and in pain.

 

This was a side effect from my tumors secreting their awful hormones. No one could seem to offer me any solution, until one day…

I met one of the endocrinologists on staff and he immediately said he would start me on this magic pill that would get rid of my flushing. I thought he was crazy, how could there be such a thing that exists and NO ONE mentioned it before? How can so many other people I know be suffering and no one knows about this?

Little did I know, this magic pill was ALSO going to balance my moods, by reducing the amount of serotonin in my body. Bingo, so many complicated topics are now so easy! 

Taking medication isn’t really a choice when you have a neuroendocrine tumor, but certain types of medications can be dangerous, even fatal. This isn’t always explained in detail, or at all. Why? Because our tumors secrete hormones that make it difficult to be matched with certain drugs. A lot of medications actually cause the same type of secretion as our tumors, making it the perfect storm.

I don’t normally like getting too scientific, or talking about specific drugs, but if it can help so many people with this disease be more comfortable… I’ll take the risk.

Have you ever heard of the term serotonin storm? Who here has been told that they can’t take an anti-depressant, or that it’s dangerous with our disease? Who is currently suffering with depression and can no longer take their medication?

Let me be the one to explain why these medications can be dangerous:

I’ve heard of a lot of people suffering with depression with this disease, but the problem is… most typical anti-depressants produce serotonin. (The same hormone that our tumors produce), making a serotonin storm! This can be fatal, or just extremely dangerous to the body. Which is why they say to avoid SSRI medication when you have a neuroendocrine tumor.

What did any of this have to do with my flushing I was talking about earlier?

Well, that’s why I call it the magic pill…

Most people who have a neuroendocrine tumor that is secreting serotonin will experience flushing, following so far? 

These tumors also secrete a lot of other hormones, throwing off our moods. Creating a chemical imbalance in the body. Causing depression. But since we can’t take regular anti-depressants that doctors will prescribe, what can be done?

Aha! The magic pill. Chlorpromazine is considered a serotonin antagonist, it inhibits the action of serotonin receptors. Without getting too scientific, it also works similarly for dopamine, another hormone that’s secreted by our tumors.

This one pill that was prescribed for my facial flushing, happened to take care of several other issues for me, because of its root purpose, balancing out that ‘perfect storm’. 

I’ve heard so many people lost hope because of their depression and not being able to properly treat it. I myself was at my end with my mood swings, as well as the most uncomfortable side effect – facial flushing. Until I began this medication, it changed everything for me.

It may not be for everyone, and I’m certainly no doctor… but I thought it would be best to share this little bit of knowledge with my fellow zebras. Maybe, just maybe, it can help you too.

Pheo VS Fabulous ❤

Zebra or Unicorn 🦄

If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra.

When you hear hoofbeats, we are trained to think horses, not zebras … 🦓

This means that in a world full of thinkers where the first answer is always to rule out the “obvious” answers first, us “rare” zebras often get misdiagnosed because it’s just too bizarre or too complex to possibly be real. Right? Wrong. We are real, we are rare, but we’re there.

NOW, imagine living in a world where you’ve only JUST started to find ways of settling in becoming a zebra, but now….. you’ve become even more confusing that even that doesn’t fit – Shall we say….. exhausted? Now you must be a unicorn 🦄

As much as I LOVE unicorns, it’s not something I wish to be health wise. However, we don’t always get what we wish for…

Or else I wouldn’t be a continuous medical mystery. A zebra, a unicorn, stomping my hooves as loudly as I can to no avail… A very complicated, extremely complex little unicorn. So desperate to be figured out but constantly misheard, misunderstood, and continuously misdiagnosed.

I was able to begin discussing this journey when I began to regain my mental stamina a few days ago here, thanks to my amazing specialists who are working towards figuring out what I am now referring to as my puzzle 🧩

With so many pieces (symptoms), and crisis’ happening – it’s proved difficult to sort out another compounding diagnosis when already living with such a rare disease.

Does that excuse make it okay for our hooves to be ignored? No. It clouds what is potentially a more potent and dangerous lurking enemy. So, what does one do? Well I’m not going to lie. It’s been a hell of a ride, it’s been isolating, I’ve felt ways I can’t begin or want to describe right now, but what I’m here to say right NOW is that we are still fighting. 

I’ve said it now and I’ll say it again, if you don’t fight for yourself… who’s going to fight for you?

It’s the unfortunate truth.

This is your life. It’s yours to save.

We have come to realize this through a series of challenges I’d prefer to have not had to endure, but change is the only constant so we are now looking ahead to the journey we are choosing to see as a positive one. Because that’s how you get through this, often we talk about ‘fighting it’ but we don’t talk about how to beat it. 

We have to, because to us we see it as an opportunity FOR change, for answers. We just want answers. No matter what they are. Going back to basics and feeling helpless is certainly not the answer.

Going backwards when you have already been robbed of the ability to move forwards is one of the most helpless feelings to have in the world.

We are coming on 3 weeks in the hospital, with the help of my incredible team I am functioning at a much more tolerable level so far – so that I can actually do plenty of testing in order to get these answers. This journey is tough, but we are fighting our hearts out. I hope you will be alongside with us, because I have a feeling we might just need that little extra bit of prayer and pixie dust

🌎✨🌈

Remember that gold standard Gallium-68 super amazing impossible-to-get fancy scan I got in order to get accepted to this clinical trial a while back? Well…

My amazing husband Doctor cupcakes was able to get me in AGAIN directly from the hospital on a day pass to get that super amazing scan today. What would normally take 4-6 weeks, took 48 hours, so a huge huge huge thank you to everyone in Sherbrooke, QC. You guys truly were my angels and we are so grateful for everything you did for my situation. Thank you for understanding and extreme considerations 😭😷

My heart is so full of gratitude, and I wanted to take this opportunity to share that.

Here’s a little glimpse of our radioactive day pass mission, a day in the life of a hospitalized unicorn 🦄 😂

https://youtu.be/AHerMoNa9AY

Pheo VS Fabulous

XOX

I will try & update as much as I can, (on my good days) 😘

Want to connect?

Visit me on Facebook

Or Instagram 📸 @pheovsfabulous

💝

Need Support? Try these fab friends

A zebra can be a unicorn

Pheo VS Fabulous 🚨 Coming to you live from the comforts of her 15×25 hospital suite 🏥

It’s incredible when the mental fog begins to clear just a touch and you’re able to begin to make the smallest of revelations.

Such as, did I just type a sentence?

Or spell revelation without going into one of my “coma like states”?

Or the bigger ones…like, it truly has been exactly a year since I fell off the planet. But did you guys really think it was by choice 😐 ?!

Warning: things may get a bit sassy while my brain function is working, I’m not letting this opportunity waste ⚠️

Do you think I would devote my entire personal life to opening up about this disease and then suddenly withdraw that responsibility unless it was for the fact that I was too sick myself? …

I made a promise, a vow if you will, and I HAVE every intention of keeping it: to not let this cancer take my “Fabulous

….Then, what good is it if there’s no one to share it with? PheoVSFab was started for others like me, and others like me seeking guidance for the ones who SO desperately need it. My greatest devastation over the last year has been losing the ability to communicate, not knowing why, and being so confused all the time that I didn’t know how or where to even begin.

Yes, that’s right, updating a status, sending a text message, menial tasks sent me into a 🆕 full “crisis” mode. Eventually leaving it impossible to do just about anything. Depressing much?

You’re telling me.

I’m just beginning to talk about menial tasks that have to do with blogging, but that was my direct connection with the outside world, also my outlet. I’m not even skimming the surface on how it’s felt to lose further mobility, forget the days of bathing yourself, most recently even the bathroom became a hot date between my husband and I, sometimes even breathing was a chore. When you can no longer sit on your couch, or touch your legs at ALL because you’re in so much pain, when your facial “flushing” is so bad that you feel you’re in an actual oven because your skin literally comes off like an inside out sunburn 🥵 , you start to question WTF IS HAPPENING TO ME!

This isn’t Just MY disease anymore.

This can’t be happening.

This can’t be happening.

This can’t be happening.

This disease, my already very weak body, and what will be known as incredibly sneaky symptoms are responsible for yet another impossibly long road to a complicated diagnosis.

But before I get into any of that..

I just want to share one very important thing, without support we are nothing, and over the years I’ve come to have such a massive family throughout the PHEO VS FAB network. YOU guys have kept us alive, and full of hope.

It has killed me every day to not be able to actively participate in helping others. Without being able to do this, I had never felt so isolated. This isn’t me.

I would never distance myself like this by choice.

So, if you DO know someone who’s sick, do everything you can to adapt to them, with them, and for them. Even if it seems they don’t want to, or can’t, they do. They maybe can’t tell you, like literally physically cannot tell you, but they need you. Everybody needs someone. No one can do this alone.

Most importantly, never ever ever ever, give up hope. No matter how bad it gets. Hope is one of the scariest things to have – but it’s the only thing worth holding onto, and when everyone & everything else is gone, it will be the only thing you have left.

Hope is something no one can take away from you. Not even cancer.

This disease can change your sight, your mental capacity, your ability to walk, it can put you into so much pain you can no longer move, it will even change who you are as a human being via a shit load of foreign hormones everyday that don’t belong, but it can’t change deep down who you are in your soul. Who I will always be is fabulous – Broken, scarred, bruised, but fab AF and ready to say F you to whatever this new chapter is going to be.

That’s the thing when you come after a fighter, eventually they WILL find a way to fight back.

Although we are still very early days and don’t have answers just yet — the fact that I am finally in my “super hospital” surrounded by my angels, being taken care of by my specialists, being HEARD, contributing, they’ve already given me the ability to write this blog post.

I’ve been in the hospital now (2018/11/30) for 2 weeks and we are slowly on a road to a very complex and delicate recovery, yet also a diagnosis progress.

Yes, you heard me. A diagnosis. What? Don’t you already have 17 diseases some may ask?

*insert laughter attempt here*

I thought I had enough as well.

WELL Apparently not.

This is what I’ve been getting at.

Some may be thinking, how come no one helped sooner?

WELCOME TO THE DANGERS OF BEING RARE

I have never been sent home so many times to die in my life.

That part was a little depressing.

One year, a lot of Dejavu, endless suffering pain, new fun attacks and a long- but -urgent -semi -coherent drive to Montreal in the end of it all ➡️ …..

…. We are now safe in the Montreal hospital, where they are amazing, and actually treat their patients 🧩

Thanks to MY own personal doctor cupcakes. My Superman. Who I think hasn’t slept in the last year in order to keep me alive and also smiling every day despite the screaming in between.

If you’re going through something similar, whether you’re in early stages of diagnosis, newly diagnosed, or like me, being diagnosed again, and again, and AGAIN.. remember this one thing – no matter how difficult, or how unexpected, eventually… things WILL come together, and when they do, only YOU have the ability to decide what you make of the rest of your story.

Through my suffering I’ve been able to reach out into so many people’s hearts and lives:

Through my pain I’ve been able to see humanity like you wouldn’t believe. Through all of the trial and tortures I’ve been able to treasure other people’s proper diagnosis and the removal of suffering.

Through the tears I’ve laughed harder than I’ve cried, and seen more beauty in darkness than I can ever describe. There is so much in the world that is to be discovered through these miracles, we just have to be mindful.

https://youtu.be/9LJGcxTB4u0

I love all of you more than I could ever describe my beautiful zebra unicorns 🦄✨

Read my other pages for more information or visit my Facebook to say hi & sometimes quick updates 💋

📸 @pheovsfabulous

THE Unicorn 🦄

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 ❤️

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!

🛣🚘

IMG_5823

The things canc… (or maybe just me) sometimes don’t want to admit.

Where did all my time go?

I woke up this morning having gone through the day quite upset, I’ve had a couple of consecutive days like this. This is really unlike me, but there is a reason leading up to this sudden feeling of sadness.

Why?

Because I’ve come to the realization that my cancer is invading my body at a much quicker pace than I expected, causing me to become a person that I woke up this morning and hardly recognize.

((When I say the cancer is invading my body, it doesn’t mean the disease necessarily, yes in some cases it has, but it’s also the act of trying to make it go away and the side effects, the subsequent diseases of the cancer, living with cancer doesn’t always mean “THIS LITERAL cancer” that will make you sick))

I talk about adapting, staying positive, and not losing hope.

We can put those things aside for a second, I’m talking about literally having to accept the fact that who I was 1 year ago, NO forget that… even…. 2-6 months ago, is a COMPLETE and utter distant memory of who I am right now today.

How is this possible?

Do you wake up and have that happen to YOU?

The rate of which I have to keep up with the changing dynamic of my body is unfair, in fact I don’t even have the proper words for it. Unfair doesn’t sum up the right amount of feeling I have towards it.

I feel the only proof I have of who I am are the photographs I am incessantly taking and even then it doesn’t prove anything because sometimes I have better days than others and can make myself look like an entirely different non-cancer having person in a photo, which is the point. I want to look like a healthy person, not a sick person for a day when I get all make-up’d and ‘pretty’. So that leaves me with nothing.

Just the sudden wake up call that “wasn’t I able to do this this this AND THIS 1 month ago and now I can’t even get a glass of water from the fridge without it being a massive ordeal afterwards?!

Wasn’t I able to do this or that 2 weeks ago?

Hey when did I start having to use the wheelchair all the time outside of the house?

Do you remember? Neither do I.

Why is everything happening so quickly? If it keeps happening at this rate, what will it look like in another 6 months?

I’m scared to ask that question, but I did. Now I can’t stop thinking about it.

I don’t want to say it’s normal – maybe a better term would be inevitable, but I’ve talked about this many times before.

What’s not normal, is it happening again and again… what I didn’t realize is that I’ve been forced to become so different yet again in such a scarcely short period of time, I’ve no choice but to wonder what’s next for me in the near future if this is now my reality?


Not being able to use the stairs regularly in my house and sometimes having to use a wheelchair……

to being bed ridden and the only activity you have and can’t even look forward to is the bathroom because it sets off your worst attacks?

Now you’re being moved to the main floor, goodbye upstairs, see you only for bathtimes. Goodbye Barbie room, master closet, bedroom, sleeping with your husband, all of the ‘normal’ things you had left’. BYE 👋🏼

This isn’t so bad, the adaptive side you talked about – the good perspective? Until the good things went away. Now you can’t even do a few steps in your own house without a dreaded pheo attack. A few steps and you’re a goner, time for that bathroom routine again. Even then, it’s dangerous. 🚽⛔️ now you need assistance, because you know you’re going to have some kind of heart or blood pressure crisis just taking a few steps from your bed to any direction and it’s terrifying. 

You know you will need pain intervention every couple of hours because your body is finding ways of becoming even more disagreeable, and your just suffering at all times now.




Treatment is in a couple of days, and all I can think about it is …

“more pain, more complications to add”

Of course then I snap out of it, I have no choice.

I’m in this situation, the only opportunity I have for a change is this treatment. It’s a potential chance for me to be able to have a difference short term outcome, each time I go it’s a chance to be different, less pain, less crisis, back to ‘normal’ within my self, so I need to have hope.

You always have to find hope someplace. This is where mine is currently coming from. Although right now I have very little, it’s being replaced with fear. I know that’s horrible to say – but that’s what this post was for, to admit things people normally don’t say.

I get hope every day from my god, my husband, and my family & friends.

I may not always admit that I’m scared, that things are moving too quickly, that my life is spiraling out of control… but I’m just like everyone else, a 26 year old woman who’s suffering like crazy with a cancer that’s taking over at a rate that I don’t know how to control that runs into doctors that don’t listen to me because I’m too ‘complicated’!

Sometimes the Pheo is a little more in charge than you might think…

F*?k you cancer, & YOU pheo.

xox

Fabulous

 IMG_4884.JPG