Category Archives: pheochromocytoma

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 💖

Rare disease protocols need to change

Posted in cystic fibrosis, pheochromocytoma, rare disease by

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 ❤️🇨🇦✌🏼

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 💖

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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

“Couple speaking out after psychologist coaches husband to try and kill terminally ill wife”

Posted in pheochromocytoma by

https://montreal.ctvnews.ca/mobile/couple-alleges-psychologist-tried-to-talk-husband-into-killing-terminally-ill-wife-1.4667916