Beating the odds

  • Five years ago, October 10th, I was told I had 1-5 years to live.
  • I remember sitting there, so full of hate and anger. Thinking to myself, “if they had just listened to me, I wouldn’t be here”

    It took me a long time to push past this, and focus on what’s important. Living

    We often forget when we’re fighting for our lives, that we have to still live our lives. What are we fighting for? To live. But each day that passes and we forget that, we are missing the opportunity to just enjoy and embrace the moments we are given.

    I’ll never forget anymore, what I’m fighting for.

    I beat the odds, I am a miracle.

    It’s so hard to think about the fact that someone gave me a death sentence, but now all I can see is how I’m so full of hope, more than I’ve ever been.

    I’ve learned so much throughout this journey, but what I take away from it the most is…. you HAVE to fight.

    Fight with every piece of your heart, your soul, your mind, your body, it takes every part of you to fight this. It can be done, and it can be won. Despite being told you’re living with an incurable illness, and some day you will die, there’s still so many days we are fighting for and can live such a beautiful life if you allow it.

    I didn’t get here by rolling over, I have done EVERY possible treatment, clinical trial, diet, physio, I have been challenged so much mentally and physically. I have been poked and prodded, had my dignity ripped away, but I’m here and I’m so happy to say that I’m alive.

    Although I have no actual news to report as far as a medical update, (that will come soon)… somehow I just KNOW I’m doing better. My hope reaches so far that I just know how I feel, and that feeling is pretty damn good. Once I get my results, hopefully we will be able to back up that feeling with some actual numbers and a better outcome.

    I didn’t get this way by any means of an easy journey, no. I did a surgery that was more like scraping out the innards of a pumpkin, (me being the pumpkin). I did an experimental radiotherapy, called Mibg. I then plunged into another even more experimental therapy called PRRT, I have flirted with chemo, lost most of my hair, been treated palliatively. Adjusted my meds more times than I can count, started new meds, gotten off all my meds. Nearly died a thousand times.

    But I’m here to tell you about it, and that’s enough for me. It has to be enough. I’ve made strides I never thought I’d ever be able to make again, like walking again instead of being bound to my wheelchair.

    We have to take these small victories and celebrate them!

    I’m here to deliver a message of hope, that there is a way of fighting an incurable illness. That in our own way… we can win.

    I’m here to tell you that I’m still fabulous, despite the odds.

    Pheo VS Fabulous

    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 ❤

    I made it to the water…

    If you asked me two months ago where I was going to be today, my answer would be very different than right now.

    I’m a positive person, but when you can’t walk or talk … there’s a point where positivity and realism needs to be used with caution. Which is why we dream, and dream, and dream some more. Which is what I did.

    They say a dream is a wish your heart makes, well my heart did a lot of wishing for me…. but it came true ❤️

    When I was admitted into the hospital unable to speak or walk, with so much pain, little to no mental function, and almost none of myself left…. if you asked me where I’d be in two months, I wouldn’t have guessed how I got my wish, and how I’m able to write about it with all of the people I care about so much.

    ….But here I am, doing just that.

    Isn’t it beautiful?

    Not giving up?

    Hope

    What is it I always go on about?

    I’ll never let this disease take my ‘Fabulous’, well it took a lot of pieces of me this time, but I still hung onto my fab so tight… the year leading up to this was hard. The hardest year so far, but I can honestly say that we didn’t once let that stop us from smiling, no matter how awful it got. That’s what got us through.

    I can also say that I smiled through just about everything.

    You have to.

    Because for better or worse this disease isn’t going anywhere, so you have to make a decision. Live with it, or fight against it. Eventually people can lose a fight, but I can keep finding ways of living with cancer. Makes sense huh?

    I think I’ve figured out this nasty little turd, shhhhhh!

    I truly wanted to update everyone and tell you that for right now I’m feeling much better all things considered, I’m not running a marathon anytime soon but I made it to the water without the help of my wheelchair today and I haven’t done anything ‘crazy’ like that in a long time! 😂

    The reason why I wanted to share this is because we’re far too hard on ourselves and we don’t celebrate the small stuff. I’ve come such a long way and I don’t ever recognize some major milestones even though they may seem like small ones. It’s about time we realize things like this may not come around again. So celebrate EVERYTHING!

    And don’t forget that beautiful smile 😀!

    I just wanted to share a bit of good news, I’m feeling MUCH better. I don’t know where I’ll be in the coming months, but as for right now…. I’ll take it. I have a long road ahead of me, but as long as I keep smiling, I’m sure my fabulous can get through anything.

    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) 😘

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    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

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    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

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