Scanxiety is real

When you have this disease, you’re used to doing medical scans. MRIs, CTs, MIBG, PET scans, gallium, you name it, if it exists… we’ve done it.

That doesn’t mean we’re any less nervous when it comes time to do it all over again.

Let me rewind a bit ⏮

6 months ago, I was told my tumors were as close to being “stable” as I’d ever come. 5 YEARS ago I was given 1-5 years to live. So you can imagine my surprise when we were given the good news.

For the last 6 months, all I’ve been thinking is “can this last?” “is it possible”? “Have I beaten the odds?”

Which is why while that 6 month interval comes to a close, I’m even more nervous than ever. Every symptom, every pain, every hot flash, every twinge of chest discomfort, ANYTHING, my mind jumps to the worst.

I’ve completely changed my diet, I’ve been more active, I’ve been less stressed. All of which are good for battling this wicked cancer.

The question is… is it enough?

Add in the anxiety of the corona virus 🦠 lurking on every surface and in the actual air we breathe, and this is a recipe for SCANXIETY!

Scanxiety (n) “scan zi et ee”: Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination (such as MRI or CT scan).

See, here’s the thing. I’ve been SO sick for so long… and as I previously mentioned, I’m no stranger to a scanner. So what’s changed? Hope. They gave me hope.

For the longest time, I just went in numb and exited numb. I listened them ramble off the same bad news in multiple different ways, only to nod and acknowledge that yes, this is really my life; and it’s ending.

Things are different now, 6 months ago I was given hope! Hope of a different future, hope of ANY future. I’ve been clinging onto my last shred of hope for years, like a child with their baby blanket. Getting withered away and smaller as time passes. That blanket suddenly got a bit brighter and grew a few inches, you get it!

When I got the call that my oncologist is expecting me to do an urgent CT scan, my first thought was… “I have to go to a hospital?!” My second thought was “sh*t, time to face reality”

I’m not negative, I’m actually one of the most positive people there is. It’s just… so hard to go to that place where you allow yourself to expect something good. However, in the end, it’s better to want something good, pray for it, hope for it, do whatever you do, than to just constantly expect the bad. I promise. You may come into some disappointment sometimes, but at least your mindset was positive. It feels a lot better.

Let’s just hope that my “baby blanket” doesn’t get ripped away and I’ll be left with nothing.

Okay, enough of that.

Back to being positive!

This is what scanxiety is. We all have it. We need to acknowledge it. Our brain wheels will turn a mile a minute, until we hear the results. Good or bad.

My CT will be scheduled within the next week or so. I’m scared af.

I’m also doing a full blood panel which will reveal how active my disease is as well.

I’ll be seeing my oncologist, and then my endocrinologist.

Once I’m done all of that, I’ll have a clearer picture of what’s happening NOW.

Until then, I’ll just be biting my finger nails and playing with unicorns 🦄

I hope all of you reading this have been getting nothing but good news or just never have to experience this. But if you do… I get it.

Time to go meditate, (this helps a lot)

I’ll update as soon as I can

✌🏼

Love y’all

Pheo VS Fabulous

Palliative care isn’t the end..

You’ve heard the words metastatic, you’ve had to sit through a numbing diagnosis, you quickly realize your life is about to change more than you ever thought possible.

They say we’re in constant fight or flight mode, your body is stuck in fight. You’re constantly researching, you’re learning about new treatments, you feel like you’re fighting constantly. No one is listening to you, why don’t they realize I’m not done? I’m not ready to throw in the towel. There has to be more to it. The whole course of my life can’t just change because we changed the diagnosis term to metastatic, since when did that mean an instant death sentence? Don’t I get a fighting chance?

I don’t feel I did. The moment my diagnosis changed to metastatic, the day I heard the word palliative care, everything changed. It was like I was now living to die. No one was listening to me anymore, I had become a shell of my previous self. Fighting to live was secondary to just managing to breathe. I couldn’t catch my breath.

The day I became palliative, was the day I knew everything would change.

I kept hearing words and phrases I didn’t like, I wasn’t comfortable with that yet. Am I in denial? Is everyone around me crazy? I chose option B.

Luckily, I wasn’t the only one who felt this way. I was fortunate enough to have someone who wouldn’t give up on me, until I said I was ready, you didn’t give up. Everyone needs that person. The person who will speak up for them when they can’t, when you’re too tired or you can’t find the words. The person who will protect your fierceness no matter how bad everyone wants to give up on you. Everyone needs that person.

More importantly, you need to stay strong and hold onto it yourself. The word death will surround you, it will become your new state of mind. Your life will now be designed to keep comfortable, not to live. You just need to be comfortable.

Others around you will start to pass, you’ll ask yourself again, am I in denial? I’m not THAT sick, am I?

Yes, you are that sick. But it’s still not time to give in. There’s still hope, and I won’t let it go until they pry it out of my cold hand.

Why does everyone only talk to me about dying? The way I want to die, how I want to die, when I’m going to die. I’m tired of death. I’m still living, I’m still here. Why is everyone giving up on me? The moment they hear palliative, it’s like you’re no longer a person. You’re a ticking time bomb, waiting to detonate. You’ve become a term, a ‘palliative care patient’. You’re no longer worth fighting for. You’ve become a category in which the words only include death, dying, dead.

Palliative care is meant to extend life, it’s meant to keep you safe and comfortable during one of the worst times of your life. It’s meant to improve the quality of your life so that you can properly live. It doesn’t have to be the end. It can be the beginning of something beautiful, something longer term, a change or a hope.

No, this isn’t the end. Not until you say so.

I had a long, difficult journey with palliative care. I learned a lot in my years with this disease. But the one thing that’s worth teaching, is that we decide. We decide how, where, and when. If you’re not ready, it’s because it’s not time.

I’ve had loved ones give up on me, I’ve had professionals tell me when, and I’ve had palliative care tell me how. But it’s you that decides these things, not them. I can’t stress this enough.

This journey has taught me how to fight, when to give in, and not to give up.

I’ve went from that numbing diagnosis, to having a bed in my living room, selling my house, re-designing everything I knew to be “comfortable”, having drugs pumped into my body to where I no longer could see, talk, or feel. I’ve lost my dignity, I lost my ability to speak, and I won’t lose that again. I was fortunate enough to have that person who spoke up for me, who didn’t see me differently. Who didn’t give up. I went from dying, to finally being able to live.

I chose to see this unwanted gift as a way to start living. Palliative care has been my worst experience, and my best experience.

So wherever you are in your journey, know your truth. Know when it’s time, and never give up.

Change could be waiting just around the corner.

There’s a reason we take medication, there’s a reason we fight to get scans and treatment, there’s a reason we don’t sign DNRs. It’s worth fighting for. WE are worth fighting for.

Hear me when I say this, you decide.

Pheo VS Fabulous

We don’t have to look sick to feel sick 😷

This is something that really gets me, my blog is all about staying fabulous despite the odds against us. Right? So why is it that sometimes this concept is hard for some to grasp? Why doesn’t beauty and cancer go together for so many people? Why can’t disabled people feel beautiful too? And look it as well!

Well I’m here to say we can.

There’s no rules to beauty, we’re all allowed to be beautiful. We don’t have to hear constantly, “but you don’t look sick”! Thank you, but I am. Makeup does wonders. It also makes me feel good about myself, just as it does for you. How do you feel without makeup?

It’s easy to fall into a depression when you have cancer, chronic illness, or even with what’s going on in the world right now. I just find feeling beautiful helps bring me out of that funk, putting on a bit of makeup forces me to get out of bed and do a bit more in the day. Going to a doctors appt with makeup makes me feel more confident and more equal.

Even before I was sick, I loved being glam. That’s who I am. So I’ve wanted to keep that part of myself and remain in control, despite what the cancer is doing to my body, my hair, my skin, my mind…

I decided to do a couple of beauty tutorials to help others be able to feel the same way as I do when I’m feeling up to it, fabulous!

Don’t get me wrong, if I’m honest… 90% of the time I’m part of the no bra club, in PJs, and just loving life as my natural self. Often feeling too horrible to do much more than that. However, when the time is right, and I’m feeling up to it… I love getting glammed up! Changing the way I feel even if just for a couple of hours.

One video is an eye look, and one is a super in depth video highlighting how to do a flawless complexion. You know when you’ve just had it up to here with your skin? And you just wanna feel like…. a million bucks? Well this is how that regimen makes me feel. I hope it helps you, I hope you learn something, but most of all.. I hope you have fun!

I know they’re long, but I find that often tutorials are not realistic. They’re edited to be 20 mins but the look took 2 hours or more in real time. I wanted them to be something you can actually recreate and follow along with.

I hope you try recreating the looks, even if you have a limited makeup supply or are a beginner, it’s step by step and you can adapt to what you have. (Were good at adapting, yes?)

Tag me if you recreate a look! My Instagram is @pheovsfabulous, or you can post it to my Facebook page Pheo VS Fabulous

Subscribe to my YouTube, like my video, and share! ❤️✨

Bronze copper Smokey eye:

Flawless complexion all night wear:

Love you all, stay fab 💪🏼✨💕

This is your wake up call…

Five years ago it took getting diagnosed with cancer to make me wake up and see things for what they really were.

The uncertainty you’re feeling right now? I felt that everyday. I still feel it, but I’ve learned to adapt to it. I’ve learned to live amongst it.

This is your wake up call.

The feelings you have right now, they’re valid. The fear, the anxiety, the grief, it’s all real. But what will you do with it? Let it overcome you and wither away? Or learn to adapt and thrive in these uncertain times.

We will all eventually face a time in our lives where everything is turned upside down, we no longer know where we fit, what will happen, and how to deal with it. Let this be the time that you figure out how. Let this be the time where you figure out how to just “be”.

Five years ago I was abruptly forced to turn my life upside down. I was forced to give up the life I was used to living, I was forced to grieve the old me.

I had to make fast and hard changes, I had to give up working suddenly. I had to apply for long term disability, give up my day to day schedule, and become isolated from the world without a choice in the matter.

I know how you feel, being told you can’t work, having to apply for EI, not knowing when you can resume your normal day to day.

Social distancing didn’t have a term then, it just happened naturally. This was my new life, my new reality.

Yes, I’m trying to give you a wake up call. But in the most respectful, understanding, and empathic way. I get you, I feel you, I understand so much of what you’re going through. I want to help you navigate through the uncertainty you’re feeling. Not judge you for how you feel.

That feeling of helplessness because you don’t know what’s in store for your future? The feeling of impending doom that you cant shake? It’s normal. I felt that way too. I too have had to cancel my future, I too have sat lost and scared about what’s to come. I too have felt out of control about the unknown that lies ahead.

So what can we do to conquer it? You’re sitting at home, pacing back and fourth, scrolling through your social media, unable to control the panic.

Let me ask you this, when you had your “life in order” and things were “normal”, what were the things you longed to do? How many times did you wish you could just shut the world out and connect with yourself? Let this be the time you ask yourself who you really are.

Let this be the time that you appreciate the monotony of your days.

Let this be the time that you tell your loved ones how you feel about them, and reach out to the people who you haven’t told in some time.

Let this be the time you just slow down the pace, take a breath, enjoy.

Don’t let fear and panic take over your life, but be respectful and aware of what’s happening around you.

This IS life changing, this IS scary, but it can also be therapeutic and life changing in a positive way.

We need to learn how to see joy and embrace our circumstances.

What have I done in the last few years during self isolation?

The time you’ve wanted to spend with your loved ones? Soak it up!

The book you’ve wanted to read? Read it.

The nextflix series you didn’t have time to watch? Watch it.

The novel you’ve always wanted to write? Write it.

The naps you’ve longed to take when you were exhausted? Sleep your heart out!

That exercise regimen you always want to start? Do it now.

The FaceTime calls you’ve put off cause you were too busy? Start calling up your distant friends.

The sunrise and sunsets you always missed? Enjoy them.

The complicated meals you never had the time or energy to cook? Start cooking!

The trail you always drive by and always say “I wanna go walk there sometime soon”, go explore!

The bath salts you always buy and never have time to use? Go soak!

Meditate, meditate, meditate! Learn how to calm your mind. It won’t just help you during this time, it will help you when all of this is over.

Learn how to face fearful situations and not succumb to that fear. Learn to be your best self, the person you never even knew you wanted to be.

Explore who you are, get to know “who I am” again.

After all… you have nothing but time.

Something that not all of us have the luxury of saying. Time is something that some of us want so badly, and yearn for more of every single minute of every single day. Use your time wisely, because one day… all of that “extra time” you’re complaining about having, could be gone.

And last but not least… just be thankful. Thankful for your health, the time you have, the friends who love you, the family who you love, your freedom. Be thankful for those who are sacrificing every day for you to have these things.

You will be sitting at home, pacing back and fourth, scrolling through your social media, but the difference? You will be able to conquer the fear of uncertainty, you will know how to deal with it head on, because you will know exactly who you are and what you wanted out of life, and you won’t let anything or anyone take THAT away from you.

Peace 🤍

Pheo VS Fabulous

Just because I have a terminal illness…

Doesn’t mean I’m terminally ill, confused? I was too.

I still might be, but I think it’s time someone explained what it is to have a terminal rare disease.

With rare disease day approaching, I’d like to do my part in educating about this rare terminal illness I LIVE with everyday.

When I received my grim diagnosis of metastatic pheochromocytoma, it followed with “you have 1-5 years to live”. I was sentenced to death, and given a time frame to live my life. It’s haunted me ever since. It’s shaped how I perceive my world and how I went about living in it.

It didn’t have to be this way…

Delivering a diagnosis should be one of the most sensitive topics there ever is in a career. It should explain the illness you’re facing, and explain how to live with it.

Just because I’m terminally ill doesn’t mean I have to die…

It can take years upon years to die, a terminal illness means you will EVENTUALLY die of that illness, but no one should be signing your death certificate.

Just because I’m terminally ill doesn’t change the standard of care, I want to live. I deserve every treatment, every intervention, every respect that someone else with a chronic condition or just a condition gets.

I’m still living, and should be treated that way.

Just because I’m terminally ill, shouldn’t mean I’m given palliative care to help me die.

It means I should be given palliative care options to help me live, to extend my life, to improve my quality of life.

Just because I’m terminally ill, doesn’t mean I don’t have a beautiful life ahead of me.

It just looks and feels different than yours, but it’s still worth living.

When I was given my grim diagnosis, it’s all I could think about. Everyday, dying. My time was ticking. My rights were being taken away as a normal patient.

Just because I’m terminally ill, doesn’t mean I should sign a DNR to get treatment

Yes, this is illegal. But it didn’t stop the hospitals around me from withdrawing treatment, and making me too scared to call an ambulance when in an emergency because I thought they’d kill me.

Just because I’m terminally ill, shouldn’t mean I had to move three hours away to be close to a hospital who gets this.

It’s so important to have proper, quality, care. Doctors who understand what a terminal illness is, that are willing and excited to treat your rare disease with the respect it deserves. Ready to give you the respect you deserve.

Just because I’m terminally ill doesn’t mean I should have no dignity…

When I was “dying”, I lost my dignity last. I held onto it for quite some time, but eventually it went away. It was the hardest thing to lose, it shouldn’t have happened, but it did. It didn’t have to be this way.

I don’t consider myself dying anymore, I consider myself someone who’s living with a terminal illness.

I consider myself someone who will eventually succumb to this disease, but not for a very long time.

I consider myself someone who’s fought hard and long enough to share this information with you all.

I consider myself someone who can help change the way terminal illness is perceived.

If you receive that grim diagnosis, please, please, don’t give up. There ARE treatments that work.

There IS a way to be stable.

Quality of life CAN be different.

You need support, in all forms, you need palliative care, (proper care), you need a team of doctors who listen and respect you. Most of all.. you need hope. That’s what this gives you, your hope to hold onto and never let go.

Happy rare disease day my fellow warriors,

It’s been a hell of a ride.

Pheo VS Fabulous

Taking back my fab!

I’m no stranger to treatments and procedures, that’s the understatement of the century! However, getting something done because I WANT IT done, that’s a new concept as of late.
When you’re sick, your body becomes sort of …everyone’s. It doesn’t feel like your own anymore, a product of the medical field.
Well I’m taking my body back, and I’m loving it.
Pheo VS Fabulous was built around the statement of staying fabulous throughout it all, never losing my joy. Well I think I’ve taken that in stride, but it gets difficult. It’s about time I can take back some of my fab. So I’m doing that in every way possible. Physically and mentally.
Have you ever heard the expression, “I woke up like this”?
When you have an illness, it takes a toll on you. It takes a huge mental toll, and that turns into a physical toll. We often just stop doing things for ourselves because everything is so damn hard. We do things out of convenience a lot, and stop doing things because they’re enjoyable and we WANT to.
This may sound crazy, but any time I go into see the doctor, or am surprised by the fact that I have to go in an ambulance, I always think first … “how do I look?” I HATE looking sick. I feel like the moment my illness takes over my physical appearance, it’s won. I’ve lost that one part I can control.
When I was SUPER sick, (bedridden) I did EVERYTHING possible to stay me. My hospital table was a makeup table, my slippers were cute, my pjs were always matching, I got my husband to do my hair. It was just important that I didn’t lose myself completely.
Now that I’m feeling better… I wanted to treat myself to a few things that could make this job a little easier in those times. When I’m too sick to do anything at all, but I still wanna wake up looking absolutely fabulous!
Operation lashes and brows commence!
I know I know, I’ll be the first one to admit… I’m a bit extra! 😂 I’m okay with that. Not everyone is going to feel the same way as me about these things, but I guarantee you you’d enjoy them just as much!
So first, I started with something practical. My eyebrows. The defining feature of the face. I was always extremely intimidated by eyebrow procedures because … let’s be honest, someone semi permanently changing the look of your face? Scary! That’s why you have to do your homework, and know what you want. I’d heard of microblading, a procedure where they take a hand tool and semi permanently tattoo your eyebrows in a natural way to give you the illusion of perfect brows at all times. However, it wasn’t until I’d discovered dolly lash lounge, and started researching other ways of achieving this apparent greatness, that I’d heard of ombré brows.
I would spend so much time filling in my brows with makeup, pomades, powders, gels, anything to make my brows look and feel great. Even if I didn’t do anything else to my face, I always did my brows. It was just a thing I had to do. It takes time though, and a lot of different products to achieve that perfect look. What we millennials would call the “Instagram” brow. Ha!
Ombré shading is a procedure using a machine vs by hand, and it’s semi permanent up to a year or more. It gives you the illusion that you’ve masterfully filled in your brows to perfection, except it’s always done! It looks extremely natural, depending on how dramatic you go, and it’s amazing to wake up to all the time.
Appointment time: 2-2 1/2hours
Once you’re done with the consultation, filling out the necessary medical forms, and having the actual procedure done.

I found it fairly painless, but again… this goes back to having done my research and making sure I went to a QUALITY place! I scoured their pictures on social media, read their website up and down, and looked for reviews to make sure I was getting the best of the best.
You lay down on a comfy bed, your lash/brow technician preps the area with numbing cream, (be sure to check what they use and be conscious of any allergies)! and then they start mapping out your new brows! My eyebrows were extremely sparse and uneven, so there was a lot of work to be done. When she first showed me what they were GOING to look like, I wanted to cry. I was so happy! So we went to work, and 2 hours later…. perfect brows 👌🏼

Just a side note, Katie was extremely gentle, professional, we talked so much glam, and I had the best time ever. It helps to be comfortable with the person you’re doing it with, so keep that in mind when you’re booking with a salon!
This is the first time I had to lay down for hours on end and actually have a fun result at the end instead of just a scan that showed my tumors, so I was pretty ecstatic!
Here is the first result:

So this was my first session, you can see I am red because of the procedure but they healed perfect and I love them so much! (I’m also extremely sensitive so this is normal) Your eyebrows will initially go a bit darker with oxidization, but that goes away after one week and they heal to the color your specialist custom makes for you. You have to go in once more after this a few weeks later for a touch up, it allows you to make any changes or go a bit more dramatic if you feel the need!
Mine is coming up soon, but I love my brows even as they are now. I’ll do a bit of work touching them up to darken them a bit, but other than that .. love!
Lashes
Now, I’m a person that actually enjoys wearing false lashes in my spare time. Haha! But it’s so much work and money. Doing false lashes when you can barely sit to do your makeup in the first place… it’s a bit much.
So when I heard I could have lashes that were voluminous and beautiful ALL the time, I had to have this. Never glueing on a falsie again? Sold.
Eyelash extensions
I’m sure you’ve heard of this, there’s all different sorts of eyelash extensions you can get. “Natural, hybrid, volume, super volume”
Well I wanted EXTRA volume. Go big or go home!
I went back to my technician and told her I wanted to be ultra glam, all the time. Hit me up with the biggest lashes you’ve got!
This is the first time I’ve been able to feel well enough to partake in these adventures, so I might as well go all out! ☺️
(And looking like I’ve done a face of makeup without actually lifting a finger… yeah, tempting!!!)
So I took the plunge.
Appointment time: 2 hours
Each lash is masterfully added to your own ONE BY ONE, by hand. It’s actually pretty crazy when you think about it. I’ve never seen such patience and precision. Of course, there are differences everywhere you go, but this was my experience.

I was pretty tired by the end of it, but it was worth it. Katie was also excellent at allowing me to have a break if I needed it, and overall I just felt super comfortable.
This is the end result! Again, my eyes are a bit red because of having them closed for so long so you tear up a bit, but I assure you they’re fab fab fab! Perfection.

I will link the website of where I got mine done, www.dollylashlounge.com so you can read yourself through the procedures and services list. I thought it would be more fun to hear it from me 😂
I told you guys I’d bring you along on my journey, and this is part of it.
Right now I’m all about taking back my fab. Thank you dolly lash for helping me do that.
And thank YOU GUYS for following along with all my crazy but fun ideas! I hope I’ve inspired you to do something fun and kind for yourself, because let’s face it… we all need a bit of love now and again. Why not let it be from you? #selflove
Pheo VS Fabulous 💖

Rare disease protocols need to change

A story was just brought to me, and although it’s not about pheochromocytoma … it hits home

A young girl in Canada is fighting for her life with cystic fibrosis, she’s in the end stages of this awful disease.

But wait, imagine you being at the end of your life, and KNOWING there’s potentially a cure for your illness, but not being able to have access to it.

US has approved this new miracle drug for cystic fibrosis patients, and many of them are reaping the reward. While Canadian patients are just clinging onto the hope that this drug will eventually be applied for! Not even accepted, just applied for.

What kind of rare disease protocols do we have when there are 17 year olds dying because the US has access to a drug that Canada doesn’t? Absolutely none? I don’t know of any, correct me if I’m wrong. I don’t think this would be happening if there was something in place, we shouldn’t have to beg and campaign and advocate for our lives, our lives should just matter enough to get access to things that will help us. Even if it only helps in the most minor way to improve quality of life, it shouldn’t be questioned.

That’s not what this drug is doing, this drug is claiming to provide miracles for these patients.

I know from experience, right now I’m sitting in a hospital bed hooked up to oxygen doing breathing treatments every 2 hours, and this will be temporary for me. Thank god. I don’t know what I would do if I didn’t have my full lung function on top of all the other crippling symptoms of my disease.

I don’t know what I would do if I knew there was a cure for my illness and it just wasn’t available TO ME.

We need to spread awareness for these people, people like us. Who are rare, but there! They need to be heard. Faces need to be seen, stories read, they are PEOPLE. Not a number on a clinical trial, not a lung function, they’re people like you and me.

Please share this post, and hopefully we can make a difference in making some noise about this drug and the overall protocol for accepting new drugs into Canada 🇨🇦

Here is the link to the story I was forwarded: please pray for Chantelle

Pheo VS Fabulous ❤️🇨🇦✌🏼