A few weeks ago I asked you guys to ask me anything, I’m so happy to share with you the answers to your questions!
Watch below ๐ฌ
Like and share!
Follow me on Facebook & Instagram: @pheovsfabulous
A few weeks ago I asked you guys to ask me anything, I’m so happy to share with you the answers to your questions!
Watch below ๐ฌ
Like and share!
Follow me on Facebook & Instagram: @pheovsfabulous
Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry because had I not been so ‘rare’, something might be different. Perhaps someone might have listened to me, instead of blaming my symptoms on anxiety. This was the worst day of my life.
If someone had just listened to me while I complained of symptoms for years, I would not be sitting here listening to how I had 18 tumors that metastasized all over my organs, and were now killing me at an aggressive rate.
I left the office that day SO angry, but that anger turned into determination. The fiercest determination I could have ever felt, I was not going to die because I wasn’t heard.
I would be heard.
For the last five years, I’ve been heard. I may have suffered along the way, I may have had to do every form of treatment possible, but I’ve been heard.
Not accepting my fate was one of the best decisions I could have made, even after countless disappointments and setbacks, despite being told again and again mountains of bad news, I didn’t give up.
We didn’t give up.
I have news …
Today I sat in a white office, waiting to see my oncologist to hear an update of my cancer progression. For the first time in the last five years, I held onto the hope I felt countless times, and waited for news.
It’s always bad news …
Not this time.
Today, for the first time since my diagnosis, I was told I was stable.
Stable …
There’s no cure for the cancer I have, not at this stage. I was given palliative care, and supposed to await death. I was sent away to die at 24 years old.
I didn’t accept that, I fought. Hard.
Now I’m stable!!! DO YOU KNOW WHAT THIS MEANS?
Stable means that for now I don’t have to continue treatment, I can take a break. Stable means I don’t have to go do any more scans for 6 whole months, 6 months! Stable means I can be in less pain, it means less attacks.
It means hope...
I’m writing this with tears in my eyes, because when I started this journey I just wanted to make a difference in as many peoples lives possible. To prevent suffering like mine. Today I feel that I can finally GIVE hope, the hope I’ve been clinging to so hard for the last few years.
Many of you have followed my journey from the beginning, clinging onto that hope just as hard. I’m finally able to tell you that I have good news, and it feels incredible.
If you’re reading this and you’re going through treatment, if you’re in pain, if you’re suffering, if you’ve just received your diagnosis, wherever you are in your journey… just know that I’ve been there.
Now I’m here.
It’s an amazing thing.
My life will never be normal, and I’m certainly not cured, but this is the first time I can say that I’m able to breathe a little. I don’t have to plan my life around what treatment is next, wondering if it will work, or what side effects it will have. I can just live. For now, I can breathe again.
If you’d like to see more of my journey, and learn about what treatments I’ve done… take a look around my blog. My most recent treatment plan was PRRT, although scary, it definitely made a difference in my condition.
Not giving up saved my life, being heard by the best of doctors for this condition… changed everything.
Never, ever, give up.
Hope is the hardest thing to have, but it’s worth it.
Pheo VS Fabulous ๐
Facebook & instagram: @pheovsfabulous
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 … ๐ฆ
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 ๐ฆ
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 ๐งฉ
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.ย
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 thatโs how you get through this, often we talk about โfighting itโ but we donโt talk about how to beat it.ย
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
๐โจ๐
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 ๐ญ๐ท
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 ๐ฆ ๐
Pheo VS Fabulous
XOX
I will try & update as much as I can, (on my good days) ๐
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Pheo VS Fabulous ๐จ Coming to you live from the comforts of her 15×25 hospital suite ๐ฅ
Itโs incredible when the mental fog begins to clear just a touch and youโre 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 ๐ ?!
Warning: things may get a bit sassy while my brain function is working, I’m not letting this opportunity waste โ ๏ธ
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 โFabulousโ
….Then, what good is it if thereโs 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 didnโt know how or where to even begin.
Yes, thatโs right, updating a status, sending a text message, menial tasks sent me into a ๐ full โcrisisโ mode. Eventually leaving it impossible to do just about anything. Depressing much?
Youโre 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 ๐ฅต , 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 Iโve 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 isnโt me.
I would never distance myself like this by choice.
So, if you DO know someone whoโs sick, do everything you can to adapt to them, with them, and for them. Even if it seems they donโt want to, or canโt, they do. They maybe canโt 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 itโs 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 donโt belong, but it canโt 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.
Thatโs 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.
Iโve 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? Donโt 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 Iโve 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 โก๏ธ …..
…. We are now safe in the Montreal hospital, where they are amazing, and actually treat their patients ๐งฉ
Thanks to MY own personal doctor cupcakes. My Superman. Who I think hasnโt slept in the last year in order to keep me alive and also smiling every day despite the screaming in between.
If youโre going through something similar, whether youโre 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 Iโve been able to reach out into so many peopleโs hearts and lives:
Through my pain Iโve been able to see humanity like you wouldn’t believe. Through all of the trial and tortures Iโve been able to treasure other peopleโs proper diagnosis and the removal of suffering.
Through the tears Iโve laughed harder than Iโve 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.
I love all of you more than I could ever describe my beautiful zebra unicorns ๐ฆโจ
Read my other pages for more information or visit my Facebook to say hi & sometimes quick updates ๐
๐ธ @pheovsfabulous
THE Unicorn ๐ฆ
Either way
…There’s so many quotes out there
Well, I say Create your own Fabulous.
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.
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 ๐
โFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!โ โ Pheo VS Fabulous
Are you guys following my new FACEBOOK and INSTAGRAM?! ๐๐ผ๐โจ๐โก๏ธ๐ค FB: Link โก๏ธ๐ธ Insta: Link @mirandasimard
How do you tell the ones you love… something you can’t begin to explain yourself”
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 ๐ฅ
Pheo VS Fabulous has reached so many people around the world, my dream is it will continue to do so. ๐ Please keep sharing, keep following, each time you do it’s one more person who is diagnosed sooner, or who finds hope ๐ซ
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 & Instagramโ๏ธโจ
Instagram ๐ธ @pheovsfabulous
๐ค Facebook
But I learned something new again yesterday
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
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:
Ever wonder why the term cancer sucks is so popular? Why so many people want to say fuck cancer? ….
this is why.ย
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.ย
Part 1: 05/23/2017 – PRRT treatment prep
jugular insertionย
But I’m tired now
I’ll leave you with something good, as I always do… I was greeted with my Doctor cupcakes (my husband), after some kisses ๐, 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. ๐๐ผ๐ฅ
more fun trial stuff soon, byeeeeee
#pheovsfabulous
learning how to be okay with never leaving your little comfy space (or rather being confined to it).ย
or
constantly leaving that comfort zone you’ve been confined to for the purpose of being EVERYTHING but comfortable.ย
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.ย
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) ย โบ๏ธโจ 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?ย
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. ๐ฅโ ๏ธ
BUT that’s the life of being terminally ill ๐ท treatments, clinical trials, being radioactive, a girls gotta do what a girls gotta do! โ๐ผ๐ฅ๐ธ๐ป
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 ย ๐ก sounds wonderful right? My mind is escaping there already.ย
Dreaming, dreaming, dreaming โจโจโจ
Ok, time to glow friends ๐๐ฝ๐
Tuesday is the actual day for treatment, PS ๐ฅโข๏ธ In case you guys forgot what treatment it is, it’s the PRRTย clinical trial ย – this will be my fourth round.
(Which also happens to be serge and my 7 year anniversary ๐, which also happens to somehow ALWAYS be spent in the hospital ๐ช๐ญ)
Bye everybody!
๐ฃ๐
How To Accept Declining Health When Chronically Ill – The Mighty
Click Link Above For Articleย
I often say that I donโt feel Iโm 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.
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.ย
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.ย
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 Fabulousย
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 – PRRTย
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.
๐๐๐ฅ๐ท๐ญ
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 Treatmentย done, that’s why they call it ROUND 3 – they’re throwing me in the ring with some help…ย well i always win. I always win. I always win.ย
๐๐ผ๐๐ผ
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?
๐โจ๐๐ผ
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.
๐๐๐
I love you baby!!!
PHEO VS FABULOUS