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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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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And we leave for round 3 – PRRT

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 – PRRT 

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.

💊💉🏥😷😭

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 Treatment done, that’s why they call it ROUND 3 – they’re throwing me in the ring with some help… well i always win. I always win. I always win. 

🙏🏼👊🏼

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?
💞✨🙏🏼

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.
💗💗💗

I love you baby!!!

PHEO VS FABULOUS

 

Facetune

Round 2 -Clinical Trial

It’s that time again…

Trying to figure out how we will pack all of my comforts into a couple of bags, and how we will leave behind everything important to me in my life.

Secretly wondering in the back of my mind… Will I return?

Catching glimpses at one another, knowing we’re thinking the same thing. Instead, distracting ourselves by packing those couple of bags… hating that it’s ‘that’ time again. 

 

It’s been a really tough couple of months, since the first treatment.

Specifically the last couple of weeks have been especially hard. I don’t know why, and we have not been able to figure it out. Going into treatment in this condition? Not the most comforting feeling, I’ve never went into a treatment feeling physically inadequate, this will be a first. I’ve never went into a procedure with a mystery looming over me, wondering…

“What’s wrong with me?”

“Why do I feel like this?”

It’s different. 

We’re close to leaving now, I can hear Serge packing the last few things in the truck, the dogs nervous feet scampering around, so many hours ahead of us to go…

Treatment will be administered on Tuesday, and then all of the protocols will be followed the rest of the week, scans, scans, and more extremely long and painfully still scans. Putting us leaving around Saturday a week later.

This is what I know for now, I am still gathering information for my longer informative post about PRRT. I figured since I’m doing the second round maybe it’s best I wait. Also, I just haven’t felt well enough to write anything remotely informative 😂🤓 that requires brain power = brain shut down= eyes go bye bye.

Okay, time for me to get dressed, and that includes putting my smile on. It’s time for a ROAD TRIP!!! 😁

Talk to y’all later 😝👻💀💩☠

Pheo VS Fabulous

XOX

 

 

Leaving today…

Oh hey guys 👋🏼

You may have to do a slight refresher from my last post, but otherwise I’m going to keep it short. I will definitely go more in detail about what’s to come soon…

I’m just so exhausted and can barely keep my eyes open while I’m typing and covered in my favorite fuzzy blankets and every pink and purple unicorn pillow/stuffed animal I own

🦄✨💜

You guessed it…… LONG DISTANCE ROAD TRIP!

To where you ask? To do what you might be wondering? We will get to all of that!

First off, I’m kind of sorry and not sorry for dropping off the planet for a little while. Since I’ve started at home chemo that is EVERYDAY, twice a day, it’s a bit hard to want to then blog about cancer when you have very little left to give. What I did have left, I ended up having to use to prepare for the upcoming cancer CLINICAL TRIAL 👏🏼  Yes, that’s a whole lot of cancer. Which we will get more into when I have more time/energy. So you can see why I am sooooo sleepy 😴😷😪

Remember back when we discussed doing the first clinical trial? The very exclusive nuclear scan that was only being done on a limited group of people to see if their tumors would light up and be eligible for ANOTHER clinical trial?

Basically, it was a special scan to see if you could participate in another form of radiation type therapy. Well… Here’s a recap of everything.

So I did that, and passed the test! My tumors lit up, lots of them, so… That means I can have the special radiation called PRRT radiotherapy. (Similar to what I did back in January, the MIBG radiotherapy) but still different.

Don’t worry, I’ll be writing all about this when I’m not so depleted.

I just wanted everyone to know what was happening so far. This week has been very overwhelming, everything has been so last minute, we were informed of my acceptance within a few days of admittance, and all I can say is how grateful I am to not be a beginner at this whole treatment thing. This last minute…. We would be FREAKING out way more, but we’re veterans, so we’re only freaking out on the inside….. A little…. Ha

-This morning we left, today is a hours and hours full of travel where we will eventually make it to our hotel and check in, and spend our last night together  😰😝

– Tomorrow (Monday) I unfortunately get checked into the hospital, alone. A new unknown hospital….! 😳🏥

(I have to start getting prepped with special meds, since the treatment will make my pheo tumors angry. Hopefully by being admitted into the hospital and being prepped with special medications, this will lessen my chances of complications)

– Tuesday @ 7:30am I begin to get prepped for treatment ⚗☠

-Tuesday @ 9am treatment commence! 🎉✨☠

The rest of the week is unknown, I do know I will be less radioactive this time in comparison to last time’s treatment. Which means I shouldn’t be isolated as long.

That’s all for now.

Will share more about our previous trip to Quebec City to prep for the trial, acceptance, and WHAT IS PRRT?

Until then…

Stay fab

💖

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PHEO vs Fab…

It takes hours of pain and struggle to achieve ‘beauty’ at the beginning of my day –

It takes just seconds and not even the slightest struggle for my body to achieve unimaginable ‘pain’ at the end.

This is living with pheochromocytoma cancer.

This is how quick it is – seconds, minutes…. Bright, cheery, and ready to take on the world doesn’t matter when you’re hit with searing pain and an overdose of adrenaline hormones. Your body assaulted so all it knows how to do is scream, cry, or vomit in defense. How quickly things can change. Every day.                            From that ‘normal’ woman full of life with the big sparkly smile to the woman who can’t move in her bed, with dark eyes, tears of pain, sweat, and a constant reminder that no matter how positive she is – pheo doesn’t care. 

I allow for what I want people to see, but it’s important to know that although I often choose to share only one perception, there is another.

I choose to share the bright smiles, and focus on the good. This is often just a small part of my day, despite me wanting it to be all the time – it’s out of my control.

Unfortunately the ‘other’ side far outweighs the one I choose to share, which is why I choose to shine a light on the brighter side of things, perhaps because it’s the one that needs a bit more love and attention in order to stay bright and stay as I like to call it – “fab”.

As much as I wish sometimes people would understand or really “get it”, I know that it’s really just an impossible situation to get. You simply cannot be within someone else’s body and feel their exact amount pain. I find myself pleased when someone doesn’t get it, why would I even want them to?

It’s easy for us to SAY “5 times in 12 days we have spent in the hospital completing tests and procedures, each time approximately a 12 hour day (actually feeling grateful if we made it back under the 12 hour mark)”

Of course I won’t tell you about the fact that I only got 1.5-2 hours sleep the night before, either because we had to get up so early or simply because my brain wouldn’t allow me to sleep. Having to think about yet another disappointing test result, or even worse, my cancer spreading to new parts of my body and becoming completely out of control and suddenly being the textbook statistic I was told about when diagnosed.

I won’t tell you too much about how when I do wake up I have to take a special medication immediately for cancer patients made to prevent vomiting, if I haven’t already, from all of the extra adrenaline that surges through my body at it’s highest level (when you wake up).

I won’t share with you how while I’m trying to put my makeup on to help hide the puffiness the steroids cause (the ones I have to take daily to live) my hands are shaking like I’m experiencing an internal earthquake, and my heart feels like it’s pumping through cement.

I would rather not share that my Fitbit bracelet thinks that me sitting down doing my makeup, literally thinks that I am in a FULL ON marathon activity, and is measuring me for all sorts of neat high calorie exercises classifications because my heart is in the highest modes possible, doing nothing. By the time I’m done, according to my data, I’ve essentially ran, biked, and maybe even gone for a high speed swim.

I don’t mention the fact that my body passes out from constantly depleting its cortisol the entire way there, so now we have to continuously guess when I am in need of the aforementioned life saving steroids (so, pretend we are an adrenal gland).

I neglect to discuss the fact that certain tests are incredibly hard on me, physically and mentally. Hate needles? That’s only the beginning, I’m stabbed constantly. Hate being enclosed in tight spaces? No choice. There’s a lot to these procedures, having a rare disease like pheochromocytoma cancer there’s a lot of questions to answer, a ton of things to explain, on top of that having subsequent conditions such as adrenal insufficiency, allergies, etc, it’s quite complicated and stressful.

I don’t usually mention that some procedures can also evoke certain feelings and traumatic memories suddenly that I don’t wish to feel or remember, making it more difficult to get through the day when you’ve got so many more hours to go. Especially when you really haven’t had any positive news since you’ve been diagnosed – making it even more and more difficult to focus on the “bright” side sometimes.

I won’t tell you too much about how once I’m done I can hardly move, my body isn’t very nice to me on the best of days, but after laying in these hard machines unable to move for several minutes, I don’t know if painful is enough to describe it.

I wouldn’t normally share that on the way back home my body passes out yet again from the exhaustion, and the amount of pain it’s suffered through. I always think that once I am home, I am in the clear, we have done everything right – we have controlled all of the medications right, we have managed everything properly. I will be fine this time, I just need some rest. I always share how I am okay, and that I am going to be just fine and go to sleep.

What I don’t tell you is the moment I think I can just close my eyes, rest my body, and get sleep I need… I often experience hours more physical suffering into the night. Until I can get this under control, it doesn’t allow me to sleep, it doesn’t allow me to rest, I shut my eyes only to cry tears of absolute agony.

It takes seconds to go from perfectly ‘normal’ to what I’ve described at any given time several times a day. Regardless of tests, hospital appointments, procedures, or things that may further provoke and push my condition to an extreme, these are examples of what I don’t share when I share the most.

‘Normal’ days are no exception – these activities are just as hard, and have the same outcome. Taking a shower, climbing the stairs,  trying to go to the grocery store, visit a friend or family member, go for a walk down down my street, they all have the same result. I know I will suffer the consequences, so I must choose everything I do with care, and plan every move carefully.

That is a real depiction of my day with this disease, and it doesn’t ever stop reminding me.  I often focus on the ‘fabulous’, find the good, and try and empower others through my experience with this disease not just focusing on the obvious struggle. It’s important to talk about both sides, not just for me, but for everyone who’s living with this just as I am.

However, every now and again… I think it’s important to mention the pheo, since I think I’m pretty fabulous 🖐🏻

PHEO VS Fabulous 💛✨

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