The grief process…

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

Someone recently asked me how I deal with the anger that comes with being dismissed for so long with rare disease.

So you just got your diagnosis. It’s hard to know how to feel, right? Thankful that you have answers? Angry that countless times you were told it was in your head? That you couldn’t POSSIBLY have that, only to have EXACTLY that..

Pheochromocytoma/paraganglioma are considered a very rare disease. The diagnostic process is a bit different for rare disease patients, and it comes with a different set of emotions when the diagnosis is finally delivered.

I’m going to talk a little bit about how I personally cope with the emotions that come from diagnosis, and what I do with the anger that comes along with it.

Of course no one wants to be sick, but with the untreated symptoms wreaking havoc on your body… honestly, by that time we are often praying for a diagnosis. Without a diagnosis, there’s no opportunity to heal, to take control back. To do something! It’s a strange dynamic, praying to be told you’re sick. Then the moment it’s confirmed.. we will give anything to be told we’re ‘fine’ again.

My first diagnosis came as a complete shock, I was 19, I’d understandably never heard of pheochromocytoma before. I never actually thought I had a 1 in a million tumor, not once did that run through my mind. I just thought I was just having sporadic attacks that made me feel like I was going to die every day. I was also relieved. I was relieved that I didn’t have to argue anymore, to prove myself to anyone. I was finally going to be able to take control over my body, and get treated. Or so I thought…

My second diagnosis was different, it’d been 4 years since my first Pheo, and I’d never been symptom free. I still dealt with the daily attacks from the adrenaline, and was being told that I was fine all over again. It was like I was stuck in a time warp that would repeat itself every day for years. I was continuously being convinced that I was ‘just’ anxious, that my blood pressure machine was wrong, my blood sugar is probably just low, etc. I heard it all. I still hear these things every day from people around the world.

My second diagnosis was a different experience, because I knew I had the disease, I knew exactly what it was, I just needed the proof. And then by the time I got proof, it was considered terminal. I was now terminally ill at 24 years old. Tough pill to swallow. How am I supposed to feel this time?

There’s no right or wrong feeling. The first time- I felt shock and then the fear of uncertainty quickly set in.

What will my future look like? Will I be able to go back to work? Will I have a normal love life? Will I always be in pain? Am I going to constantly have to be worried about it coming back? Am I going to be treated differently? Do I want to be treated differently? Am I different?

The second time- all I felt was numb, and then anger set in. I was so angry. My husband was angry. We were outraged that this could be able to happen, only… I’d find out later that it happens more than I think

I think I can confidently say I hear at least 1 person per DAY that is going through this. With this specific disease. This incredibly rare disease. It’s been six years since my diagnosis, so that’s a lot of people.

I’m generally a very happy, positive, bubbly-type chatty person. I don’t like feeling so negatively for extended periods of time. Holding onto anger. But I also know now that it’s important to acknowledge your feelings, so that you can work through them. Toxic positivity isn’t a better solution, being positive and hopeful needs to come from a place of true belief. That way the negative emotions don’t become pent up little balls of anger that burst at any given random time.

I initially channeled my anger into taking my control back, my plan? Getting a new medical team. One that would hear me, and be specialized. I needed a miracle team. I felt like if I could regain a sense of control.. I’d be able to feel different. I didn’t know what emotion I was looking for, I just needed to get past anger. I didn’t realize that I’d be holding onto that toxic feeling for longer than I’d like to admit.

It’s similar to the process of grief, you’re grieving your old life, your sense of normalcy, your old self. The ability to do mundane tasks, to relate to others in your circle, in your age group, the feeling of not knowing the importance and impact of living. It’s a hard dynamic for me because I was always so young, and I felt cheated out of a lot of opportunities I KNEW I would be amazing at. We all have things to grieve, it needs to be done.

So let’s talk more about how I regained that control. 48 hours after my diagnosis, I had arranged to see a new specialist, a whole new team. I knew I needed the best, I was 24 and given a poor prognosis. Honestly? I was dying, and they weren’t shy about telling me so. You don’t mess around when it comes to your health, you do anything and everything to change your circumstances.

Securing this new team… it made me feel I had purpose, that I was capable, I felt proud. These emotions are a lot better than anger, am I right?

As I rebuilt trust with these new doctors, fragments of anger would slowly chip away. My fear of not being heard, was slowly diminishing. Time. It takes time.

But what if we don’t have time? I’m terminal, I don’t have time to go through this long process.

Terminal illness isn’t a ticking time clock, it FEELS like that at the beginning… believe me. But I am here to remind you, eventually, with this precious time, your mindset changes.

I decided I needed an outlet for the fear, anger, and acceptance I so badly needed.

That’s when I started my blog, as a way of channeling these feelings into something good. Something with purpose. I wanted to know my experience meant something. I wanted my diagnosis to be an example for health care practitioners around the world. I wanted my story to be told to EVERY single pheochromocytoma patient.

I wanted my words to live on forever knowing they were making a difference.

Channeling your fear and anger into helping yourself? That’s a beautiful feeling.

Channeling fear and anger into helping someone else? That is when those fragments become whole again.

But let’s back up, I’m not saying everyone has to start a blog. What I am saying is that it’s important to get your feelings OUT, write them down somehow. Whether that be a journal, a support group, a diary, or a video blog. Even if you just talk to your camera and never share it! Whatever you feel comfortable with, it’s important to let your story be heard. Even if it’s just for you, this type of therapeutic action is something that for me, changed my life.

I’ve recommended different types of journals, diaries, gratitude practice, all different sorts of ways of expressing feelings to many people over the years: I’ve never heard someone say it didn’t help them in some small way.

Here’s the hard part: forgiveness. Eventually, down the road… I forgave everyone who I was still holding onto anger towards. This is NOT an easy step, I won’t sugar coat it. To get to this point, it’s a lot of work. Self discovery, trauma healing, mental health practices, growth. However, actually doing it? Meaning it?

It’s so unbelievably freeing.

I know I probably don’t need to remind anyone of this, but forgiveness is not for the other person. It’s for YOU. It’s so that you’re not suffering with those toxic feelings all your life, those fragments that are making you feel broken, while they are out in the world not even giving it a thought. You don’t have to personally forgive them, you do it however you want to. Whatever makes you feel safe.

It can be through prayer, you can again write it down, or just sit alone with yourself and say it aloud. You can role play with someone you trust.

I personally did just that, all of the ways. I had a lot to get off my chest, a lot of years of trauma and forgiveness. I only recently got to this step, after 6 years. Everyone’s time line is different, and that’s okay. Even if you decide, “no, I can’t possibly forgive someone who did this to me”

That’s okay too.

This is YOUR healing process, and you do with it what you decide. I can only let you know what I did, and what helped me. Made me feel whole again.

I’ve had a lot of people come to me and say “I could never do that”. I’m with you, I’ve been there. I said that repeatedly in the beginning, then it shifted to “one day, I think I’ll be ready” and then one day, I knew I was

So as you can see, it takes time, no one situation is a one size fits all. However we are all still very similar, and much closer than you think. That’s what being part of a community is. No matter what type of diagnosis you’re receiving, it’s going to change your life. It doesn’t have to change you, the person you are inside.

Your ‘fabulous’…

“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

I’d like to send out a personal acknowledgement to everyone surviving and thriving today. Being national cancer survivors day, I thought this would be the perfect time to share this incredibly important article.

When people hear cancer survivor, they think past tense, someone who’s ‘beat’ cancer and is alive today.

A survivor is someone who’s been diagnosed, actively in treatment, in remission, and someone like me, who’s a mix of all of the above. Someone who’s surviving every day, never having the time where they can say it’s in their past. But they can say –

I’m a survivor

Happy survivors day zebras 🤍🦓

Pheo VS Fabulous

2May2021

“It’s not me…!” It’s my cancer!

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Brain, cancer blogger, Cancer treatment, Caregiver, Chronic illness, chronic pain, Cortisol, endocrine, Endocrinology, Health, health advice, information, Love, net cancer, palliative, pheochromocytoma, positivity, rare disease, surviving cancer, Survivor, terminal illness, young cancer, zebra by pheofabulous

“Harmonious self regulation is the body’s natural state, stress pulls you into another state, of heightened biological responses that triggers a flow of hormones, increased heart rate, stimulate the hyper-vigilance of the senses, and many other linked reactions. But these are all temporary, they are emergency responses only”.

Let’s talk about this 👆🏻 I read this last night in one of my @chopra novels.

It actually hit me pretty hard. Although this is scientifically true, for someone who suffers with my disease, this response is NO longer a emergency response. It can happen anytime. Without warning ⚠️

On a normal day, I agree with that statement. To my core. I practice gratitude, inner self healing, I meditate, I let go of toxic feelings, i detox my life often of stress. So with that said…

Imagine your body being able to cause this stress response to ignite… WITHOUT the presence of a threat, or any type of apparent stress 🤯

Pheochromocytoma tumors produce those stress hormones, the very ones he’s talking about.

Igniting the body’s natural response state to stress, except… I’m stuck in that state, all the time. My neurologist recently described it as being chased by a wooly mammoth, the fear and stress response ignites (fight or flight) and then followed by saying “but for you, the chasing never ends. You’re always being chased, and your body can never rest”

We don’t get the option. We don’t have that basic human function to decide if we are happy or not 😂 our body decides for us.

I know some of you may not get this, you may be thinking “you just need to do more inner work to find your true happiness”. It’s a normal response to something people can’t possibly understand, which is why I’m doing my best to explain it.

What I’m getting at is that this is a physiological time bomb we carry around that decides chemically how we’re going to feel for a certain period of time. It’s an actual sudden, rapid, release of stress hormones that put your body into a state of fight or flight.

That can manifest differently for some. If someone’s untreated and undiagnosed, they’ll feel it normally as if they’re suddenly going to die. It’s not just an emotional response, it’s a physical reactive state where your blood pressure elevates, your heart rate suddenly increases, and that comes with symptoms like sudden brain squeezing headaches, shaking, intense nausea or vomiting, it truly is a physical assault from your own body.

For most, they have to adapt to it for a few months and then they get surgery. But me, we’re friends for life. We’re in this till the end, me and Pheo. Pheo and I

Since I’ve done countless treatments, and am well managed with medications, I don’t experience that type of physical intensity that often anymore. However, the emotional stress response is very friggin real.

I don’t want to complicate this too much, but I also have comorbidities that create the same hormonal imbalance and sudden stress responses. Adrenal insufficiency, and mast cell activation syndrome. I’m basically a little bomb of chemical reactions 😂

So I thought it’d be a good time to just kind of touch on this subject since I don’t talk about it very often.

I’ll use yesterday as an example, I rested all day, felt amazing, better than I had in quite some time, was so happy. I felt like my resting efforts were paying off. I had no stress surrounding my body. My husband and I had a much needed movie and rest day, the vibe was just perfect.

Around 10pm… it felt like a RAGE I bomb was igniting inside of me. It just hit me like a ton of bricks. I was scraping an avocado and suddenly felt like I was going to throw it at the wall. Get this, I was making avocado brownies. BROWNIES guys. If there’s ever a time to feel happy and at peace… it’s when making brownies

For those of you reading this that don’t have the disease, Imagine your worst PMS outburst you’ve ever had, and multiply that 1000x – no warning, no control. Just a massive chemical response. And for men, just imagine your most reactive moment, any cause, and Multiply THAT, but keep in mind you have no control over it.

The panic, the anger, the rage, these are all stress hormones. And they come without permission or cause 😐

That’s my best way to explain what living with pheochromocytoma feels like, and it only gets messier with comorbidities that create similar stress responses.

Last night, even after ten+ years of living with this disease, I was still surprised at the intensity of what I felt. It made no sense. Especially because it wasn’t accompanied by the physical response I normally experience. It was purely emotional. To me, there’s nothing worse than feeling out of control of my body.

I did everything right, and my body still betrayed me. It also feels like I’m a broken record when I say “it’s not me, it’s my body! I can’t control it!”

It FEELS like a load of BS, even I sometimes challenge whether or not that’s true and I have the damn disease. So I can’t imagine how hard it is for the people who love us that are in the war path when this happens. That’s the part I hate the most. I’d give anything to be able to control myself at least when it comes to the people I love, I’m sure anyone reading this knows the feeling I’m talking about. The guilt you feel the moment you snap at your loved one about something that makes no sense. Brownies guys. I had an explosive response to making brownies. If it was just me and the brownies, I could have taken it, it’s when you react badly to your loved one. It’s wounding in a way I can’t quite explain. The heavy guilt that comes with it, especially as you utter the words “I can’t control it” …

Even if they know, they understand, and they love you regardless, it doesn’t erase the feeling that I have when this happens. My husband is the most understanding person in my universe, he never takes offence, and he certainly doesn’t make it worse. But … that doesn’t change MY guilt, rational or not, it still sits heavy in my heart

I’d do anything to be able to control my feelings, sometimes I’d prefer the physical response rather than this irrational emotional eruption. Because then it’s just me that has to feel the wrath of my cancer when it’s physical. But then I remind myself, that’s not true either. Your loved one still very much feels it.

And that’s the worst part for me.

Pheo VS Fabulous

What’s your biggest struggle when it comes to living with this disease?

Connect with me 🤍👇🏼

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23Apr2021

Let me re-introduce myself…

Posted in adrenal cancer, advocate, awareness, Blogger, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, endocrine, Endocrinology, Health, health advice, information, inspirational, Love, Mibg, Montreal, MRI, net cancer, nuclear medicine, Octreotide, palliative, pheochromocytoma, positivity, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, Survivor, terminal illness, World cancer day, young cancer, zebra by pheofabulous

can·cer

ˈkansər/ – disease; causing the body and mind to adapt, overcome, and embrace change.

Quality of Life:

What do these three seemingly simple words mean to you?

Someone who is living with a permanent illness which will impact their ‘quality of life’ will hear this phrase from time to time. For someone like me, who is considered a ‘palliative care patient’ (which is a polite way of saying my disease will eventually kill me) this term gets thrown around a lot. But do we ever stop to think about what it truly means? Being 30 and terminally ill, I have to think about often.

I used to just see it as a phrase. I actually used to see many things as just phrases, words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer. That is, until you live them and you are intimate with each word. You get to know what each one will mean to you; you get to appreciate what kind of quality you’d like to live, and start to live it. I am going to share my perception of these words, and hopefully they will not just be words to you either.

Before I do that, let me introduce myself. My name is Miranda, I’m a 30 year old with a rare form of terminal cancer called pheochromocytoma. I’ve been living with this disease in some way or another since I was about 17-18, and officially diagnosed at 19. After my initial surgery to remove a large ‘benign’ tumor, I was misdiagnosed with anxiety for 4 years, which led to my eventual terminal cancer diagnosis.

I vowed two things in that moment: one being that I would do everything in my power to prevent this from happening to someone else by sharing my story and learning how to advocate further for rare diseases. I didn’t realize where this vow would take me, eventually filling a large gap for a rare disease that should have never had the opportunity to be terminal. And two, I vowed that cancer would never take my FABULOUS.

I wrote this mission statement when I first started my blog:

“Pheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and I’ve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when you’re battling an illness like pheochromocytoma cancer, that’s when I decided I wouldn’t let it take that away from me. It’s more than just looking a certain way, it’s about BEING fabulous, strong, and positive when you have every reason not to be”

You’re probably wondering, WHAT IS pheochromocytoma? I’ll try to keep it as simple as possible. It’s essentially a tumor or tumor(s) that secrete or produce adrenaline. Adrenaline and noradrenaline are hormones that we actually need to function as the trigger for your body’s ‘fight or flight’ response. These hormones prompt higher blood pressure, a faster heart rate and a boost in other body systems that allow you to react quickly with a burst of energy. *Think, lion attack!* A pheochromocytoma ultimately makes you overdose at any given time on these hormones, without warning, which we pheo people like to call ‘attacks’. Think: lion attack… with no lion? Essentially your tumor is attacking you with your own stinkin’ adrenaline! This causes your body to suddenly react with high blood pressure, increased heart rate and palpitations, and a whole lot of other deadly symptoms. I say deadly because if uncontrolled or untreated, these attacks are life threatening. So not only do I have cancer, but I have a cancer that tries to kill me multiple times a day with it’s poison IN my body. Fun, right? I also don’t just have one, I have metastatic disease and have anywhere from 30+ at any given time. (This is reduced greatly!)

Being so young and considered terminal, I’ve had to learn a lot about the phrase, ‘quality of life’. It’s meant to bring a sense of comfort, a sign that no matter what the cancer is going to take from you, we are going to do our best to keep you comfortable while all of these changes take place, and most importantly, just keep you who you are.

We cannot simply continue to live our pre-cancer, ‘normal lives’…right? Well, I kinda thought I could. I think we all do in some respects, and that’s normal. The difficulty is realizing where you need to adjust your expectations. I didn’t say give up there, did I? Time to ADAPT.

So here comes the hard part, once YOU start to change, no one but you can prepare you for this. The next time you hear “You’re so strong!”, don’t shy away from it. Think about what it means to them, what it means to you, and how you have truly earned it. So, you start changing, and this ‘quality of life’ thing everyone keeps talking about, seems like a very far away ideal at this point.

“How am I supposed to have any sort of Quality of Life when this disease is doing nothing but take take take?”

“I don’t even have a LIFE anymore, how am I supposed to have a ‘quality’ one?”

“Everything I am doing is supposed to ‘provide me with better quality of life’, but after every procedure I’m left feeling worse and can do less.”

“How am I not supposed to lose hope?”

My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ‘normal’ to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still is… the uncertainty and element of surprise.

Did I tell you how wonderful it feels to simply be a little more kind to yourself?

Change is constant, and I need to be willing to accept that although my life is very different, it’s mine. The fact that I wake up every day is a beautiful thing. Understanding that even the smallest victories are worth celebrating, simple joys are to be found and appreciated every day, because these ‘small’ and ‘simple’ things… probably mean the world to you. I now go through life dreaming that everyone could see it through my eyes. Living with cancer has shown me what a gift life is, the complexity of it all becomes so simple.

Embracing change

Throughout most of my story, I’ve chosen to share personal aspects of my life to help others come to the same realizations and places I have, but hopefully avoid a lot of suffering along the way. I’ve experienced surgeries, clinical trials, treatment after treatment, finding the “best” doctors. I’ve been labelled palliative at 25 years old old, terminal, metastatic, aggressive, all the things you don’t want to hear. I’ve been confined to a bed, a wheelchair, and at times lost my sense of independence. I lost my voice, my ability to share, and my hope. I never thought I’d get through it.

But we did. Because cancer makes you ADAPT and OVERCOME.

I say ‘we’ because my husband goes through all of this with me, from the very beginning. Since my first diagnosis, he’s been by my side. He’s my voice when I don’t have one, and he’s my biggest supporter when I do. He is my caregiver, my everything. And our loved ones go through this journey just as much as we do.

I want to share with you a glimpse of what my life looked like a few years ago, when I thought I only had a year to live, what led me HERE today.

When they first introduced the idea to set up a bed in my living room to improve my quality of life, I thought, “now!? I’m only 25 years old, I’m not putting a hospital bed in my living room, that will never go with my decor!” (priorities, jeeze…).

Remember those simple joys? Small victories? Well THIS was the greatest joy, a godsend, a MASSIVE victory! I could see out a window, have LIFE fluttering around me, I can see my husband cooking in the kitchen, I can see my dogs run around the house, I could go and choose a very pink blanket for my new bed (ha!). I can actually walk to the kitchen and serve myself a drink or snack when I’m feeling well, I can drift off to sleep right in front of my fireplace.

That’s what quality of life is. Those aren’t just words, This is MYlife.

You too will be able to adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to remember… your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer. Just remember, there’s no right or wrong when it comes to your life. As long as you’re the one who’s smiling at the beginning and end of it!

The most incredible part of this story? I’m 30 now, and after going through all of that, supposedly having a year to live, I’m still here sharing, thriving, and learning more every day.

I’m no longer confined to a bed, I no longer live in constant fear, I have accepted that I’m living with cancer. THRIVING with terminal cancer. I have continued to adapt and overcome and change my circumstances through hard work and advocacy. My quality of life now is a direct result of the information and research we have put into figuring out how to improve my treatments and symptom management, always taking the chance, and fighting so so so pretty.

I have learned how to forgive but not forget in order to continue to help others with this cancer, help them not only live but hopefully thrive. The best part? I never once lost my fabulous.

Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it! I can’t wait to share it with all of you, and hopefully have you share with me. I’m so grateful to be part of an incredible community of fierce thrivers. I look forward to seeing YOUR light, smile, and beauty! 🤍🙏🏼

– Pheo VS Fabulous

28Feb2021

I am Rare: 2021

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, cancer, cancer blogger, Cancer treatment, Caregiver, Chronic illness, Clinical trial, Endocrinology, Health, health advice, information, pheochromocytoma, Rare disease day, terminal illness, Unicorn by pheofabulous

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✨

Follow my everyday journey:

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Facebook: pheo VS fabulous

19Jul2020

35 things I wish you knew about having a rare illness…

Posted in pheochromocytoma by pheofabulous

35 things we wish you knew about having a rare cancer, chronic disease, or rare illness.

Here’s the thing, before I start… I want you to know that I’ve asked hundreds of patients fighting this disease and others to chime in on what we wish you knew. This post is not entirely from my perspective, but it’s all the things I feel.

It’s important to know that we all don’t fit into one neat little box. We all have our own perspectives and things that bother us and things we wish you knew.

This is my effort to put as many of these together and help as many of our friends, family, and support systems understand where we’re coming from living with this disease.

It’s hard enough to live with cancer, chronic illness, or rare disease, but it’s even harder to not be understood.

We know we’re complicated, but we didn’t ask to be this way.

I sincerely hope that this brings you a level of comfort knowing that there are ways of communicating with your loved ones, if you just take the time to understand. Having a rare disease requires knowledge, patience, and a lot of understanding.

You may not always have the right thing to say, but it’s best to just ask.

So, here goes nothing.

1. I wish you knew that I’m in pain every.single.day, even when I don’t show it. It’s always there. Imagine waking up every single morning and every part of you hurting… with no hope of it going away, and every movement you make, it just gets worse throughout the day.

2. I wish you knew that I hate answering “how I’m doing”. I feel like you don’t want a long winded answer, but that’s often all I’ve got. So I’ll often tell you “I’m fine, or okay” just to answer. I wish you’d ask something specific so that I can be honest.

3. I wish you knew I don’t feel “brave or strong”. I didn’t have a choice to wake up with cancer or any co-morbidities. I’m not brave because I have cancer, I’m not strong because I have cancer, I was forced into this life.

4. I wish you knew I felt uncomfortable when you say I’m an inspiration because I have cancer. If I’ve done something to deserve it, and it’s well intentioned, I appreciate it. Actually, I appreciate it regardless. But I just wish it wasn’t such an automatic response to having cancer. Having cancer doesn’t get to all of a sudden make you not a shitty person if you are one 😂 it doesn’t immediately make you an inspiration. At least, we don’t feel that way.

5. I wish you wouldn’t say you’re sorry when I tell you I have cancer. I don’t know how to respond and it makes me uncomfortable. It’s like we’re forced to say “it’s okay”, but… it’s not okay. Please try and be sensitive to speaking to someone with an illness, it’s uncomfortable for all involved but it doesn’t have to be. You can be sorry, it sucks, but maybe ask us more about our disease, open up a dialogue to understand us better. We appreciate that more than being felt sorry for.

6. I wish you knew that not all pheochromocytoma is cancerous, but even when it’s “benign” it’s just as dangerous and often can turn into cancer. The C word is what scares people, but it should be the P word that frightens you more. Pheochromocytoma is the disease we fight. Benign, malignant, it doesn’t matter. It’s one of the scariest diseases out there.

7. I wish people would understand that just because I had surgery to remove the pheochromocytoma tumor, they often do and will come back. We’re never really “done” or cancer free. If it is cancer, we live with it for life. It’s a terminal illness. Despite all the treatments and surgeries we get, it’s a way of managing the disease, not curing it.

8. I wish people understood how many triggers there are with this disease. My tumors literally hate everything. My skin feels like it’s on fire within 30 seconds of sun exposure. I can’t take a hot shower without having an “attack”. I can’t walk far or fast without provoking an attack. I can’t get too excited. I can’t get stressed. I can’t blow dry my hair without being soaked in sweat. I sometimes can’t do the dishes without provoking an attack. It can be something big like exercising or something small like getting dressed, but it can and will happen without any notice. There are certain foods we can’t eat because it’s a trigger. Loud noises. The list goes on, it may be helpful when we tell you this that you do a bit of research yourself to understand us more and what we go through. Maybe start here.

9. I wish you would look up my disease every once and a while before exhausting me. I’m happy to talk about my disease, I’m happy to explain it, but I don’t want to have to repeat myself 1000 times because you refuse to do the research. If you care, you should want to know more.

10. I wish you understood that my cancer is different than other cancers. These tumors are different than any other tumor. They are adrenaline secreting tumors. I wish you understood what impact adrenaline has on the body. It’s debilitating, it’s dangerous, it’s lethal, and can be deadly. People hear “we produce too much adrenaline” and picture a scene from an action movie. No, it’s not fun. We don’t have superpowers, and it doesn’t give us more strength. It’s the opposite. Read here about what having an attack of adrenaline is like.

11. I wish you understood that even if I look perfectly well in photos or even in real life, you should see my insides! It takes many hours to look “normal”. We do it to take the pressure off of ourselves and you, but it doesn’t mean we’re even close to being ok. Many people do this with chronic illnesses, so that they can feel more like themselves. It doesn’t make them any less sick, in pain, or uncomfortable.

12. I wish you knew how uncomfortable I am when you say “well I hope they fix you soon” or “you’ll feel better tomorrow”. These comments can sometimes be belittling to our disease because they can’t “fix” us. We won’t feel better tomorrow. We will never be normal. These are just facts, it’s not negativity. If you don’t know what to say to someone with this disease, try to pick up on their feelings, responding with “wow that must be rough on you” or acknowledging our pain isn’t a bad thing. It doesn’t always have to be cheery sunshines.

13. I wish people wouldn’t say “I lost the battle to cancer” or anything along those lines. Cancer didn’t win. Everyone dies. When someone dies of a heart attack, they don’t say “the heart attack won”. Fighting cancer isn’t a choice and shouldn’t be summed up to determine our strength or how well we fought it.

14. I wish you understood that getting a good nights rest or going out to get some fresh air isn’t an option for me sometimes. Yes these things feel good and I hope I can do them more often, but it’s not going to magically make me better. Please understand that this disease is more complicated than even the doctors understand, so no amount of nutrition, exercise, fresh air, will sort us out.

15. I wish you knew how much I just want to live a normal life again.

16. I wish you knew how different I feel and out of place I am.

17. I wish you knew that it will never be normal again.

18. I wish you knew the fear I feel even after the disease is removed, we have to wait in fear as it comes back one day.

19. I wish you wouldn’t avoid me because you feel uncomfortable talking to me. There are so many resources to be able to talk to a friend with a chronic illness, cancer, or any disease. A true friend will never be disappointed in what you said, but we will help you better understand it. We’d rather you learn with us rather than cut us off completely.

20. I wish you knew how much I appreciate when you say “no matter what happens, we will get through this”

21. I wish you knew how much I appreciate when you say “I’ll always be there for you, no matter what happens” and live up to that.

22. I wish that if it’s too hard for you to be there for me, you’d explain it. If you’ve lost someone with cancer and it’s hard on you to relive it, I wish you’d say that. We often blame ourselves when we lose friends gradually and never know why. We beat ourselves up about what we did wrong. We’re incredibly lonely. It’d be nice to have an explanation or try to talk things out, even if it’s difficult.

23. I wish people knew how many comorbidities this disease causes. High blood pressure, heart failure, adrenal insufficiency, chronic pain, kidney disease, bone disease.

24. I wish our doctors would actually SEE the patient in front of them. Understand that we are different. When I get my blood pressure taken and it’s in the “perfect zone” but for ME it’s actually considered high because of the amount of medication I’m on to lower it. Listen! When we tell you what the Pheo does to our bodies and what an attack is, listen! Learn from us. Know that we’re a different breed of disease. Take us seriously, we often know more than the medical staff. Just because we appear to be okay, and don’t fit in your medical mold you’ve created, doesn’t mean we’re not sick! This would prevent a lot of misdiagnosed patients, and speed up the diagnostic process if you’d just LISTEN to us.

25. I wish that you knew behind my smile, there’s so much pain. I’m exhausted, I still have to go on everyday and live my life despite this illness. But I’m tired. Not just take a nap tired, but physically and mentally exhausted from living with something that’s trying to kill me everyday.

26. I wish you knew what living in “constant fight or flight” meant. Never being able to shut off. Always having adrenaline pumping through your veins.

27. I wish you understood that your anxiety is not the same as what my anxiety from this disease feels like. I’m not talking about normal anxiety that anyone can get, I’m talking about chemically induced anxiety panic that is caused by an overflow of hormones in my body. It’s like anxiety on steroids mixed in with impending doom and a dash of dread.

28. I wish you knew how much this disease alters the trajectory of our lives. We can’t plan, we have to live minute to minute. We’re often told were lucky because it’s a slow growing illness and so even if we die, we’ll have plenty of time. Excuse me?!!! The level of ignorance here is just inexcusable.

29. I wish you’d understand that under all of the things I’ve talked about today, I’m still the same person! I’m still here. Treat me that way. I still have hopes, dreams, I still like the same jokes, I still have the same interests. I am not my cancer. I don’t want you to only treat me like I’m “normal” when I look “normal”. I want to be treated normal even when I’m at my sickest, especially when I’m at my sickest!

30. I wish you wouldn’t ask “how are you?” But “is there anything I can do for you?

31. I wish you knew that even after taking 20 different medications, I don’t feel better. They allow me to get up and semi function, but they’re not a cure.

32. I wish you understood there isn’t a cure.

33. I wish you understood that I can’t control my anger or emotions. It’s not me, it’s literally my tumors deciding what mood I’ll be in at that particular moment.

34. I wish I didn’t have to talk about any of this.

35. I wish I never heard the word pheochromocytoma.

I hope this helped get a glimpse into our world, and I hope you can use this as a resource with your friends and family when you want them to understand more.

If there’s anything I missed, or anything YOU want to ask, please leave a comment down below and I’ll do my best. Don’t forget to share

Pheo VS Fabulous 🦄🤍

2Dec2019

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 pheofabulous

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 💖

9Oct2019

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 pheofabulous

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

4Dec2018

Zebra or Unicorn 🦄

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, cancer scan, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Cortisol, Endocrinology, Health, health advice, inspirational, Love, Montreal, net cancer, Octreotide, palliative, pheochromocytoma, positivity, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, Survivor, the mighty, Unicorn, Vlog, young cancer, zebra by pheofabulous

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) 😘

Want to connect?

Visit me on Facebook

Or Instagram 📸 @pheovsfabulous

💝

Need Support? Try these fab friends

30Nov2018

A zebra can be a unicorn

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Cortisol, endocrine, Endocrinology, Health, health advice, health monitor, information, inspirational, Interview, Love, Mibg, Montreal, MRI, MUHC, net cancer, Octreotide, palliative, pheochromocytoma, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, Survivor, Vlog, young cancer by pheofabulous

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 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 🦄

21Dec2017

Create your own Fabulous

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, christmas, Chronic illness, chronic pain, Clinical trial, Endocrinology, Health, health advice, information, inspirational, Love, magazine, Montreal, pheochromocytoma, positivity, Radiation, surviving cancer, Vlog by pheofabulous

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

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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

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 💫🙃

“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..

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

Merry Christmas my loves ❤️

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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

Give yourself a nice shave

wear that new dress shirt you were saving

gel your hair

put on a light (hospital friendly) cologne 😅