Category Archives: cancer blogger

This is your wake up call…

Posted in adrenal cancer, adrenal insufficiency, awareness, Blogger, cancer, cancer blogger, Chronic illness, chronic pain, Endocrinology, Health, health advice, information, inspirational, Montreal, pheochromocytoma, rare disease, surviving cancer, terminal illness by

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…

Posted in adrenal cancer, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, Chronic illness, chronic pain, Clinical trial, Endocrinology, Health, Mibg, Montreal, MUHC, net cancer, palliative, pheochromocytoma, PRRT, rare disease, Rare disease day, surviving cancer, Survivor, terminal illness by

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!

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, cancer fabulous, chronic pain, Montreal, net cancer, palliative, pheochromocytoma, positivity, surviving cancer, terminal illness by
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 💖

Your Questions…

Posted in adrenal cancer, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, Chronic illness, chronic pain, Clinical trial, Cortisol, endocrine, Endocrinology, Health, information, Interview, malignant, net cancer, nuclear medicine, palliative, pheochromocytoma, positivity, PRRT, Radiation, rare disease, terminal illness, Unicorn, young cancer, zebra by

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 🎬

Like and share!

Follow me on Facebook & Instagram: @pheovsfabulous

The Mighty Article

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Endocrinology, Health, health advice, information, net cancer, pheochromocytoma, positivity, rare disease, Survivor, terminal illness, the mighty, young cancer by

Yesterday I shared a very personal blog that I felt could relate to a lot of people going through similar times.

Not even necessarily sick people, just people who have had fading relationships for multiple reasons after changes in their lives.

It seems it was really relatable because The Mighty approached me to publish my article!

If you missed it, here is the link !

Please take the time to read and share, maybe it can help someone more than you know.

Pheo VS Fabulous 💖

10 things I’ve learned about fading relationships

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, Caregiver, Chronic illness, chronic pain, Endocrinology, Health, health advice, Montreal, net cancer, palliative, pheochromocytoma, rare disease, surviving cancer, terminal illness, Unicorn, young cancer, zebra by

Support comes in all forms when you receive a diagnosis, but as you become sicker and the “old you” starts fading away, so do your relationships.

So many people want to be there for you when you first receive your diagnosis, but as you become sicker, when it all becomes real, it seems you start losing people one by one. There’s nothing worse than having to grieve your old self, plus have to mourn each relationship lost as you go.

One day you wake up, and all of a sudden you feel like you have no one left.

‘Hanging out’ and visits turn into text messages, the text messages turn into the occasional Facebook chat, and then even those just stop abruptly. Until there’s no more communication. Everyone just went away...

You can’t help but blame yourself,

if I wasn’t this sick, I’d still have friends.

If I was healthy and could have a normal conversation about monotonous things, I wouldn’t push people away.

If only I could be healthy and not intimidate people who are unsure how to approach this new “sick” me.

If only I wasn’t intimidated by them thinking about me being sick, and could fill in the awkward silences.

…If only I could erase all the sad eyes, the weakened expressions, and not have people who once respected me feel sorry for me.

This is the worst part, the pity.

If only these people knew that I’m the exact same person, the same person who was their friend for all those years. The same family member, the very same.

People change regardless of being ill, but it seems being ill puts a wedge in between the healthy and the sick. The unknown is often just too much. If I changed because I became an asshole I’d understand, but I’m the very same person.

This is the first time I’ve ever expressed how much it hurts.

How at my sickest I’ve never been so alone.

When someone says, “you must have a lot of people around you!” And you just don’t know how to respond.

How I don’t want to come off as ungrateful or selfish because there are some amazing people who have come into my life despite me being sick.

But those relationships lost still weigh heavily on my heart, and I wish I could have every single one back. Back to normal.

But I’ll never be normal.

So it shall remain…

What I will say is I’ve learned a few things while these relationships have come and gone.

  1. It’s not your fault, even though it may feel like it is, stop blaming yourself.
  2. Often people want to be there, they just don’t know how.
  3. It’s exhausting trying to make others feel comfortable around you, focus on yourself being comfortable and the rest will follow.
  4. It’s not your job to put everyone else at ease, if they are your friend, they will try to find a way to understand your new situation.
  5. People who are truly your friend, WANT to know how you are. They don’t want the sugar coated answer, be honest with your friends.
  6. Your best friends don’t mind changing plans, or understand when you can’t make it because you’re not feeling up to it suddenly.
  7. Your best friends will make an effort to make YOU comfortable in this new changing circumstance, they’ll go out of their way to make sure you have a place to lay down in their home if you get tired, or have a fan handy for when you get too warm etc.
  8. The people you lost were probably not meant to be close to you in the first place.
  9. Don’t feel bad for making the decision to cut out toxic relationships, even though you might feel like you can’t afford to lose anyone else, it’s not worth putting yourself through hell to have “friends”.
  10. Don’t take for granted the people who did stay around, know that they love you so much, and cherish them every day.

Pheo VS Fabulous 💖

Facebook: @pheovsfabulous

Instagram: @pheovsfabulous

I have news …

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Chronic illness, chronic pain, Clinical trial, Cortisol, endocrine, Endocrinology, Health, health advice, Mibg, Montreal, MRI, MUHC, net cancer, nuclear medicine, Octreotide, palliative, pheo mets, pheochromocytoma, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, terminal illness, World cancer day by

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 💖

Facebook & instagram: @pheovsfabulous

Beating the odds

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, birthday, Blogger, cancer, cancer blogger, Cancer treatment, Chronic illness, Clinical trial, Endocrinology, Health, Mibg, Montreal, palliative, pheochromocytoma, PRRT, surviving cancer, terminal illness, young cancer by
  • 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

Posted in adrenal cancer, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, Chronic illness, Endocrinology, Health, health advice, health monitor, information, inspirational, net cancer, Octreotide, palliative, pheo mets, pheochromocytoma, rare disease, surviving cancer, Survivor, terminal illness, zebra by

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 ❤

Zebra or Unicorn 🦄

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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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