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 💖

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

“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

CTV news tonight @ 6

Posted in pheochromocytoma by

If ever there were a time to watch the news, tonight is the night. I will be on CTV news tonight at 6 with Emily Campbell discussing one of my most difficult events that happened to us so far.

It’s been a hard day, please support and tune in to see another part of what we as the terminally ill go through.

Once it’s aired , as it’s net cancer November… SHARE! Please share the story everywhere possible!!!

It will be my first time seeing it at 6 too, so I’ll be with all of you, hopefully you’ll be with me too ❤️🙏🏼

It’s CTV Montreal EST, I’ll also share the story here afterwards online, or watch it on https://montreal.ctvnews.ca/mobile/video?clipId=434385

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 ❤

The Danger of being “Rare”

Posted in pheochromocytoma by

Most things designed to help you do just that, help.

………… But what if they didn’t?

What if the things meant to help you, were actually hurting you?

What if I told you the one thing that’s supposed to take away pain and suffering, is actually what’s causing it, making you worse.

Imagine going through life doing all of the right things to help yourself, but you still go backwards.

Let me start off by explaining what happens when you’re “rare”

…The danger of being rare is feeling unsafe.

…The danger of being rare is not being heard.

…The danger of being rare is you’re “too complicated” to help..

Passed off to someone else, one after another, or just simply sent back home.

…The danger of being rare is often receiving a misdiagnosis.

…The danger of being rare is trying to figure out what’s right and what’s wrong.

…The danger of being rare is having to be your own advocate.

The danger of being rare is losing hope.

The danger of being rare is losing your ability to speak, and no one knowing why.

The danger of being rare is losing your ability to walk, with no solution in sight.

The danger of being rare is being refused care.

The danger of being rare is suffering so much everyday you think you’re dying, and being right.

….But what if it wasn’t your disease killing you?

The danger is in the misunderstandings, misinformation, and misdiagnosis.

The danger of being rare is when it can be avoided!

Many of you who know my story are probably thinking I’m referring to just that. The beginning of my journey. Although the information applies directly to it, it isn’t what I’m referring to.

I swore I would never let this happen to me again.

… some things are out of our control

We trust those who are taking care of us. That trust is essential, this is your LIFE!

But what happens when you can no longer trust what’s being done to help you?

I spent two months having my life saved in the hospital figuring that one out. ➡️ read here

Over the course of my journey with this disease, I was literally deteriorating. Each day became a new understanding of how this cancer would kill me, except I found out in the end it wasn’t just my cancer making me deteriorate. It was how I was being treated. In a year this got so bad that I eventually lost my ability to walk, talk, or do anything for myself.

… WHY??????

Although I don’t use the word normal very often, this was not NORMAL.

Being palliative is a very delicate thing, because the understanding of what palliative is … is sometimes misunderstood.

Being treated palliatively, is even more delicate. There are different stages of palliative care. Sometimes you get put into a stage where you don’t belong.

I lost over a year of my life to the most painful suffering because of a lack of understanding.

THAT is the danger of being rare.

People hear “pheochromocytoma” and say .. wow this is very rare, I’m not sure there’s much I can do for you.

When often what you’re there for is completely unrelated to the Pheo.

I won’t lose any more of my life to these misdiagnoses, misunderstandings, and misinformation.

It seems it’s up to us to protect ourselves, and ultimately seek the type of care needed in order to live with a rare disease.

Self advocacy saved my life.

It’s not acceptable to go through this time and time again, no one has enough life left in them to gamble it away with misjudgments and mistakes.

Read more below for an update

*I am now recovering and doing much better, for those of you wondering. After I started rehabilitations in the hospital, and received proper care from my super doctors 🥼… my days have been a whole lot brighter.

I will be returning back to the PRRT clinical trial, as it turns out, it actually WAS working for me. So I’ll be completing some more treatments eventually.

For now …

I will continue to use this platform as a way of educating, helping others with diagnosis, and help navigate through this crazy pheochromocytoma pathway.

My goal is and always will be to prevent what happened to me from happening to others. In order to do that I have to share my story, at times like this with such personal and difficult information, it gets really hard for me to share. I have to re-live everything as I write, so I hope you understand my absences.

I hope I have touched your life in some way or another, I can’t tell you how much you all have kept ME going.

Until next time 💖

Pheo VS Fabulous