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

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

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 

The Mighty -Can·cer & Quality of Life

What ‘Quality of Life’ Means To Me as I Adapt to Cancer

img_4332

https://themighty.com/2017/02/what-quality-of-life-means-in-my-life-with-cancer/

Some of you may remember at the end of January I had written a piece about quality of life when living with cancer for my blog. It was an intimate article that focused on the body and mind’s adaption process when overcoming each new phase of your new life, and the quality that you now have to find within it.

I’m proud to say it’s also just been published on the Mighty as well. You can follow the link above to read it, and please share.

It’s at times like this I find quality within my own life, and I’m thankful to be able to share it.

Pheo VS Fabulous

xox