I am Rare: 2021

If you had asked me six years ago what I was going to write in 2021 on rare disease day, I’d have told you I wouldn’t be here to share.

I’d have told you what they told me, I maybe have a year left.

I’m writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. I’ve dedicated every ounce of energy I have into sharing my journey, the ups, the downs, the discoveries. In hopes that someone would learn something from my experience.

I’ve always been a dreamer, but this was much bigger. Before I even really understood the impact of awareness, I truly believed that if I shared enough… I could make a difference. The type of difference that could prevent someone from hearing the words “it’s too late, it’s now terminal”. Like we did.

I believed deep in my soul that if I shared enough, I would finally be heard. Someone who needed it would hear me, fate would allow them to gain the knowledge they needed to push for a diagnosis.

I wasn’t even considering the fact that my experience could potentially better inform healthcare workers, and trickle down… creating a knowledge that would never be heard unless experienced by people like me living with the disease.

My first pheochromocytoma was missed because of a lack of knowledge about the disease, it wasn’t the fact that it was too rare to be considered, it just simply wasn’t thought of at all.

My second was different, the knowledge was there, but it was considered too rare to come back. It was overlooked because of the odds. The literature didn’t support what I was experiencing, so it couldn’t possibly be that.

Four years after my first one, I was finally diagnosed with a recurrence. It was misdiagnosed for too long, it spread all over. It’s terminal. I was told I’d have 1-5 years to live max, ‘based on the literature available’. The literature, the incredibly vague and unreliable literature. So little to reference and gain the knowledge needed to empower the patient or even the doctor.

This is when we realized it would become vital to my outcome for us to learn for ourselves. We had to take control of my situation, we had to look for the most knowledgeable doctor to treat me.

We didn’t want to accept my odds. So we started down a new path of self advocacy, learning, and sharing.

I started my blog, documented every treatment, feeling, reaction, change, anything.

I figured, if I’m going to die, I want to leave behind the gift of information. I wanted to re-write the literature. There was such a gap of information at that time, I wanted to help fill a small part of it.

As I shared, I started to connect with more and more people. I was learning more every day. So I kept sharing what I learned.

This new wealth of information would impact my treatment decisions, my ability to strongly advocate for myself, and be part of all decisions regarding my health.

That’s the thing with awareness for rare disease, it’s not just a cute buzz word. It’s life changing. The information we received from others was what kept me alive. It’s what allowed me to bring up my own suggestions, and avoid doing things I knew wouldn’t work for my situation.

Each new step of my journey, I would share with others, and the cycle would continue. The wealth of information and knowledge keeps growing, and we keep changing outcomes. We keep improving quality of life, and we help healthcare professionals better understand us. Leading to proper care and diagnosis.

Of course I can dream so big that if we become less rare… it can lead to a cure. And yes, it can. One day.

But for right now, I’m focusing on preventing it from getting to my stage in the first place. Where it’s incurable. If we can share enough, if we can continue to become less rare, it will be diagnosed earlier and able to be treated.

For those of us who are past that stage, like me, becoming less rare means proper treatment protocols, better treatment options, symptom management, improved quality of life, and the knowledge to be treated effectively in emergency situations. I can’t tell you how many times I’ve been asked…

“well what do YOU normally do when this happens?”

The knowledge we share will continue to educate all parties involved, making situations like this happen far less often.

I actually never dreamed of a day where I’d hear “because of your blog”…..

That’s the power of sharing, the impact of awareness.

It shouldn’t fall entirely on the patient, but our experiences are how we all continue to learn.

I am still here today because of knowledge, because of awareness. Plain and simple.

Each new mind that hears the word “pheochromocytoma”, has the ability to share that with someone else, and so on. You can never know how this will impact the person hearing it.

So keep sharing while you can.

I know I will.

The most suffering I ever experienced was not being able to use my voice. Not having the ability to share.

I hope you will help me continue to share my message, my story, my journey, my experience, and my dream.

Pheo VS Fabulous 🤍🦓

Sending you unicorn kisses, love, and pixie dust✨

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“We have Cancer”

My husband and I often say “we have cancer”. A cancer diagnosis affects everyone involved, your spouse, your kids, parents, your friends, anyone who is a pivotal part of your life.

Anytime we’re in the doctors office we catch ourselves saying “we”, and we will be greeted with odd looks. But that’s the thing, WE do have cancer. It hits home like a bomb, it shakes up all of our worlds. One is physically fighting the disease, the other is fighting in every other way on their behalf.

We fight for one another when the other is down, we are each other’s voice when we don’t have one, and we continue to carry the load whenever we need to for one another. That’s a partnership. That’s a family.

The first instinct that everyone wants to do is help, fix, and act. Everyone gets into a very adrenaline like state the first few months after diagnosis, just going through the motions, trying to hold it together. This is normal.

However, it’s so important to be communicating. My husband and I in the beginning would hide our feelings a lot not to upset each other more. We didn’t even realize we were doing it.

He would be so overwhelmed with the fear of losing me, and I’d be overwhelmed with the thought of losing him. I hear a lot of people go through the same experience, but the issue is we often don’t communicate our fears to one another. This can be challenging for a lot of people.

We end up getting a bit edgy, holding in so many toxic emotions, we need an outlet. We HAVE to talk about it!

It’s important for it at least sometimes be with each other, that way everyone knows how sensitive to be with one another, how patient, and where your mindsets are at.

The thing is with the instinct to act, is that we’re always wanting to jump into motion the moment our loved one is suffering. We want to find a solution, fix their problem. We try to control all the things we can control.

Meanwhile feeling completely helpless, and out of control.

It’s a vicious cycle.

Even after all this time fighting this disease, and knowing it’s better to just listen to someone’s fears and thoughts… whenever my husband is having a tough time or not feeling well, I STILL have the instinct to react and try to mend my his heart, his body, or his mind. I think it’s just in our nature.

So I can only imagine how he feels with me. He has way more restraint than I do though! 🤭

That’s the thing, once we understand that we will ALWAYS have that immediate urge to fix… but first, we must listen! Truly listen. Let the other person talk whenever they’re ready, only when they’re ready. Offer for them to talk about what’s bothering them, ask them..

“do you want to talk about it?” Don’t push too much or ask too many questions. Just be a sounding board. Also, giving a choice is very empowering.

When the person has truly gotten everything off of their chest, in time… we can start introducing helpful solutions, small acts of care, and things that help, but not necessarily FIX… just alleviate some of the pain or pressure they’re holding onto.

This can be by simple things. Like massage, meditating together, taking a walk in the fresh air, setting a time each week to have vent and have an open communication session, anything that works for your rhythm in your household.

It’s so important to remember that when someone is sick, we are ALL feeling it in different ways. Add on the pressure of the pandemic…. and oooo boy, it really is a life altering and uncertain time.

When supporting one another, try to think:

“how would I want someone to respond to ME right now?”

“What would make me feel better in this situation?”

“What kind of support would I appreciate after sharing what I just shared?”

If we are mindful of this, we can offer better support to our partner or family. Anyone who is involved.

If you’re trying to support a friend or a family member (not your partner or someone in the household), the same rules apply. You should consider everyone involved.

So if you’d like to reach out and help, try to make suggestions that take a bit of pressure of everyone.

Whether that be a kind gesture like offering to bring groceries, drive them to an appointment to give the care giver a break, or simply send them a little thoughtful note, letter, book, maybe an uplifting journal, anything to just brighten their day. As we all know, most of us have more bad days than good.. so chances are, you will completely change their day or week with one small gesture of help or kindness.

I will share more soon on how to support a loved one with cancer, but for now I just found it important to remind us all…

WE have cancer.

We ALL need support.

We all need to come together.

WE will get through this!

Comment down below if this was helpful to you 🤍🙏🏼

Pheo VS Fabulous 🦄

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

Your Questions…

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!

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The Mighty Article

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

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 …

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

  • 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

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 🦄

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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A zebra can be a unicorn

Pheo VS Fabulous 🚨 Coming to you live from the comforts of her 15×25 hospital suite 🏥

It’s incredible when the mental fog begins to clear just a touch and you’re able to begin to make the smallest of revelations.

Such as, did I just type a sentence?

Or spell revelation without going into one of my “coma like states”?

Or the bigger ones…like, it truly has been exactly a year since I fell off the planet. But did you guys really think it was by choice 😐 ?!

Warning: things may get a bit sassy while my brain function is working, I’m not letting this opportunity waste ⚠️

Do you think I would devote my entire personal life to opening up about this disease and then suddenly withdraw that responsibility unless it was for the fact that I was too sick myself? …

I made a promise, a vow if you will, and I HAVE every intention of keeping it: to not let this cancer take my “Fabulous

….Then, what good is it if there’s no one to share it with? PheoVSFab was started for others like me, and others like me seeking guidance for the ones who SO desperately need it. My greatest devastation over the last year has been losing the ability to communicate, not knowing why, and being so confused all the time that I didn’t know how or where to even begin.

Yes, that’s right, updating a status, sending a text message, menial tasks sent me into a 🆕 full “crisis” mode. Eventually leaving it impossible to do just about anything. Depressing much?

You’re telling me.

I’m just beginning to talk about menial tasks that have to do with blogging, but that was my direct connection with the outside world, also my outlet. I’m not even skimming the surface on how it’s felt to lose further mobility, forget the days of bathing yourself, most recently even the bathroom became a hot date between my husband and I, sometimes even breathing was a chore. When you can no longer sit on your couch, or touch your legs at ALL because you’re in so much pain, when your facial “flushing” is so bad that you feel you’re in an actual oven because your skin literally comes off like an inside out sunburn 🥵 , you start to question WTF IS HAPPENING TO ME!

This isn’t Just MY disease anymore.

This can’t be happening.

This can’t be happening.

This can’t be happening.

This disease, my already very weak body, and what will be known as incredibly sneaky symptoms are responsible for yet another impossibly long road to a complicated diagnosis.

But before I get into any of that..

I just want to share one very important thing, without support we are nothing, and over the years I’ve come to have such a massive family throughout the PHEO VS FAB network. YOU guys have kept us alive, and full of hope.

It has killed me every day to not be able to actively participate in helping others. Without being able to do this, I had never felt so isolated. This isn’t me.

I would never distance myself like this by choice.

So, if you DO know someone who’s sick, do everything you can to adapt to them, with them, and for them. Even if it seems they don’t want to, or can’t, they do. They maybe can’t tell you, like literally physically cannot tell you, but they need you. Everybody needs someone. No one can do this alone.

Most importantly, never ever ever ever, give up hope. No matter how bad it gets. Hope is one of the scariest things to have – but it’s the only thing worth holding onto, and when everyone & everything else is gone, it will be the only thing you have left.

Hope is something no one can take away from you. Not even cancer.

This disease can change your sight, your mental capacity, your ability to walk, it can put you into so much pain you can no longer move, it will even change who you are as a human being via a shit load of foreign hormones everyday that don’t belong, but it can’t change deep down who you are in your soul. Who I will always be is fabulous – Broken, scarred, bruised, but fab AF and ready to say F you to whatever this new chapter is going to be.

That’s the thing when you come after a fighter, eventually they WILL find a way to fight back.

Although we are still very early days and don’t have answers just yet — the fact that I am finally in my “super hospital” surrounded by my angels, being taken care of by my specialists, being HEARD, contributing, they’ve already given me the ability to write this blog post.

I’ve been in the hospital now (2018/11/30) for 2 weeks and we are slowly on a road to a very complex and delicate recovery, yet also a diagnosis progress.

Yes, you heard me. A diagnosis. What? Don’t you already have 17 diseases some may ask?

*insert laughter attempt here*

I thought I had enough as well.

WELL Apparently not.

This is what I’ve been getting at.

Some may be thinking, how come no one helped sooner?

WELCOME TO THE DANGERS OF BEING RARE

I have never been sent home so many times to die in my life.

That part was a little depressing.

One year, a lot of Dejavu, endless suffering pain, new fun attacks and a long- but -urgent -semi -coherent drive to Montreal in the end of it all ➡️ …..

…. We are now safe in the Montreal hospital, where they are amazing, and actually treat their patients 🧩

Thanks to MY own personal doctor cupcakes. My Superman. Who I think hasn’t slept in the last year in order to keep me alive and also smiling every day despite the screaming in between.

If you’re going through something similar, whether you’re in early stages of diagnosis, newly diagnosed, or like me, being diagnosed again, and again, and AGAIN.. remember this one thing – no matter how difficult, or how unexpected, eventually… things WILL come together, and when they do, only YOU have the ability to decide what you make of the rest of your story.

Through my suffering I’ve been able to reach out into so many people’s hearts and lives:

Through my pain I’ve been able to see humanity like you wouldn’t believe. Through all of the trial and tortures I’ve been able to treasure other people’s proper diagnosis and the removal of suffering.

Through the tears I’ve laughed harder than I’ve cried, and seen more beauty in darkness than I can ever describe. There is so much in the world that is to be discovered through these miracles, we just have to be mindful.

https://youtu.be/9LJGcxTB4u0

I love all of you more than I could ever describe my beautiful zebra unicorns 🦄✨

Read my other pages for more information or visit my Facebook to say hi & sometimes quick updates 💋

📸 @pheovsfabulous

THE Unicorn 🦄

Create your own Fabulous

Instead of running around for last minute gifts, decorating the tree, attending fabulous parties…

The tradition we have manufactured the last three years is driving through snow storms hours away, telling each other everything will be okay, waiting for treatments that will dominate the rest of our year to come… and hoping the magic of Christmas will just somehow make everything better.

Each year I watch the first snow and it’s my symbol of hope…

I imagine that snow falling on me and just washing away everything I’ve been through in the previous year, starting anew.

Each year I wait for Christmas to allow those new beginnings; a new chance for me to heal, be in less pain, for my husband to suffer a little less.

…Back to reality

Like clockwork, my cancer always progresses to its worst state in the months following up to the end of the year, until I can’t take it anymore, and we are forced to take action. Most likely because I’ve done treatment all year long, and it’s my body’s way of saying enough is enough … or hey, why did we stop?

Either way

All of the tests, pain, investigations, right before Christmas.

“Do I really have to travel now? we’re days away!”
“We also need to know what’s wrong with you, and we’re not taking any chances, your condition has been too bad lately”
“I know. It’s just so frustrating how this happens every year”

True. I’ve felt awful as of late. Actually, Awful can’t sum up how I’ve felt.

This year is a little different…

I’ve done a year of (P.R.R.T) treatment that’s made my cancer worse.

That was a hard one. ⬅️

This IS the time to go and figure out what to do, where to go from here, there could be NO options for me, but I simply don’t believe in that 💫🙃

…There’s so many quotes out there

“Create your own happiness”

“Be your own sunshine”…

Well, I say Create your own Fabulous.

There’s ALWAYS something else, the question that always remains… are YOU willing to fight?

The answer is always yes.

The days leading up to my appointment…

I made a choice; my body had been fighting me hard, new chest pains, breathing trouble, my tumors alternating between pain crisis and adrenaline outbursts every hour.

….I was done

Which led me to my choice, do I abandon who I am, use the one opportunity I have to leave my house in weeks and go out looking as shitty as I FEEL?

Why should my outside match my insides?

Do I say F you Pheo and try and feel like my normal self as much as I know how? As much as every part of my body is telling me I can’t, what’s the point, just go like you are, it doesn’t matter.

The ‘normal’ me that brightens up those cold white walls, the me that regardless of the dark cold stormy weather, I bring that sunshine, the me that laughs off anything because I’m ready for everything?!

THAT is MY cancer.

Being prepared for just about anything..

Being fabulous despite the odds

I created.my own.fabulous

Why?

Because morale is everything.

Cancer is still going to be there despite the way I look, but it makes me FEEL a heck of a lot better when I don’t look like I have cancer 💋

So the next time you’re dreading those cold white walls surrounding you, you’re anxious for that inevitable news, you don’t want to get that scan…

  • Don’t take that extra hour of sleep
  • put on that darker shade of lipstick
  • curl your hair
  • throw on a bit of mascara
  • gurrrl contour and bake that face if you feel up to it

Go all out! 😂✨💖

I didn’t forget about my guys!
  • Give yourself a nice shave
  • wear that new dress shirt you were saving
  • gel your hair
  • put on a light (hospital friendly) cologne 😅

Do whatever it is that makes YOU have a bit of extra confidence & less sicky feeling 😉😷❤️

Most importantly, remember….

“Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” – Pheo VS Fabulous

Are you guys following my new FACEBOOK and INSTAGRAM?! 🙏🏼💖✨💄➡️👤 FB: Link ➡️📸 Insta: Link @mirandasimard

Merry Christmas my loves ❤️