Category Archives: cancer fabulous

Taking back my fab!

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, cancer fabulous, chronic pain, Montreal, net cancer, palliative, pheochromocytoma, positivity, surviving cancer, terminal illness by
I’m no stranger to treatments and procedures, that’s the understatement of the century! However, getting something done because I WANT IT done, that’s a new concept as of late.
When you’re sick, your body becomes sort of …everyone’s. It doesn’t feel like your own anymore, a product of the medical field.
Well I’m taking my body back, and I’m loving it.
Pheo VS Fabulous was built around the statement of staying fabulous throughout it all, never losing my joy. Well I think I’ve taken that in stride, but it gets difficult. It’s about time I can take back some of my fab. So I’m doing that in every way possible. Physically and mentally.
Have you ever heard the expression, “I woke up like this”?
When you have an illness, it takes a toll on you. It takes a huge mental toll, and that turns into a physical toll. We often just stop doing things for ourselves because everything is so damn hard. We do things out of convenience a lot, and stop doing things because they’re enjoyable and we WANT to.
This may sound crazy, but any time I go into see the doctor, or am surprised by the fact that I have to go in an ambulance, I always think first … “how do I look?” I HATE looking sick. I feel like the moment my illness takes over my physical appearance, it’s won. I’ve lost that one part I can control.
When I was SUPER sick, (bedridden) I did EVERYTHING possible to stay me. My hospital table was a makeup table, my slippers were cute, my pjs were always matching, I got my husband to do my hair. It was just important that I didn’t lose myself completely.
Now that I’m feeling better… I wanted to treat myself to a few things that could make this job a little easier in those times. When I’m too sick to do anything at all, but I still wanna wake up looking absolutely fabulous!
Operation lashes and brows commence!
I know I know, I’ll be the first one to admit… I’m a bit extra! 😂 I’m okay with that. Not everyone is going to feel the same way as me about these things, but I guarantee you you’d enjoy them just as much!
So first, I started with something practical. My eyebrows. The defining feature of the face. I was always extremely intimidated by eyebrow procedures because … let’s be honest, someone semi permanently changing the look of your face? Scary! That’s why you have to do your homework, and know what you want. I’d heard of microblading, a procedure where they take a hand tool and semi permanently tattoo your eyebrows in a natural way to give you the illusion of perfect brows at all times. However, it wasn’t until I’d discovered dolly lash lounge, and started researching other ways of achieving this apparent greatness, that I’d heard of ombré brows.
I would spend so much time filling in my brows with makeup, pomades, powders, gels, anything to make my brows look and feel great. Even if I didn’t do anything else to my face, I always did my brows. It was just a thing I had to do. It takes time though, and a lot of different products to achieve that perfect look. What we millennials would call the “Instagram” brow. Ha!
Ombré shading is a procedure using a machine vs by hand, and it’s semi permanent up to a year or more. It gives you the illusion that you’ve masterfully filled in your brows to perfection, except it’s always done! It looks extremely natural, depending on how dramatic you go, and it’s amazing to wake up to all the time.
Appointment time: 2-2 1/2hours
Once you’re done with the consultation, filling out the necessary medical forms, and having the actual procedure done.

I found it fairly painless, but again… this goes back to having done my research and making sure I went to a QUALITY place! I scoured their pictures on social media, read their website up and down, and looked for reviews to make sure I was getting the best of the best.
You lay down on a comfy bed, your lash/brow technician preps the area with numbing cream, (be sure to check what they use and be conscious of any allergies)! and then they start mapping out your new brows! My eyebrows were extremely sparse and uneven, so there was a lot of work to be done. When she first showed me what they were GOING to look like, I wanted to cry. I was so happy! So we went to work, and 2 hours later…. perfect brows 👌🏼

Just a side note, Katie was extremely gentle, professional, we talked so much glam, and I had the best time ever. It helps to be comfortable with the person you’re doing it with, so keep that in mind when you’re booking with a salon!
This is the first time I had to lay down for hours on end and actually have a fun result at the end instead of just a scan that showed my tumors, so I was pretty ecstatic!
Here is the first result:

So this was my first session, you can see I am red because of the procedure but they healed perfect and I love them so much! (I’m also extremely sensitive so this is normal) Your eyebrows will initially go a bit darker with oxidization, but that goes away after one week and they heal to the color your specialist custom makes for you. You have to go in once more after this a few weeks later for a touch up, it allows you to make any changes or go a bit more dramatic if you feel the need!
Mine is coming up soon, but I love my brows even as they are now. I’ll do a bit of work touching them up to darken them a bit, but other than that .. love!
Lashes…
Now, I’m a person that actually enjoys wearing false lashes in my spare time. Haha! But it’s so much work and money. Doing false lashes when you can barely sit to do your makeup in the first place… it’s a bit much.
So when I heard I could have lashes that were voluminous and beautiful ALL the time, I had to have this. Never glueing on a falsie again? Sold.
Eyelash extensions
I’m sure you’ve heard of this, there’s all different sorts of eyelash extensions you can get. “Natural, hybrid, volume, super volume”
Well I wanted EXTRA volume. Go big or go home!
I went back to my technician and told her I wanted to be ultra glam, all the time. Hit me up with the biggest lashes you’ve got!
This is the first time I’ve been able to feel well enough to partake in these adventures, so I might as well go all out! ☺️
(And looking like I’ve done a face of makeup without actually lifting a finger… yeah, tempting!!!)
So I took the plunge.
Appointment time: 2 hours
Each lash is masterfully added to your own ONE BY ONE, by hand. It’s actually pretty crazy when you think about it. I’ve never seen such patience and precision. Of course, there are differences everywhere you go, but this was my experience.

I was pretty tired by the end of it, but it was worth it. Katie was also excellent at allowing me to have a break if I needed it, and overall I just felt super comfortable.
This is the end result! Again, my eyes are a bit red because of having them closed for so long so you tear up a bit, but I assure you they’re fab fab fab! Perfection.

I will link the website of where I got mine done, www.dollylashlounge.com so you can read yourself through the procedures and services list. I thought it would be more fun to hear it from me 😂
I told you guys I’d bring you along on my journey, and this is part of it.
Right now I’m all about taking back my fab. Thank you dolly lash for helping me do that.
And thank YOU GUYS for following along with all my crazy but fun ideas! I hope I’ve inspired you to do something fun and kind for yourself, because let’s face it… we all need a bit of love now and again. Why not let it be from you? #selflove
Pheo VS Fabulous 💖

I have news …

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

Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry because had I not been so ‘rare’, something might be different. Perhaps someone might have listened to me, instead of blaming my symptoms on anxiety. This was the worst day of my life.

If someone had just listened to me while I complained of symptoms for years, I would not be sitting here listening to how I had 18 tumors that metastasized all over my organs, and were now killing me at an aggressive rate.

I left the office that day SO angry, but that anger turned into determination. The fiercest determination I could have ever felt, I was not going to die because I wasn’t heard.

I would be heard.

For the last five years, I’ve been heard. I may have suffered along the way, I may have had to do every form of treatment possible, but I’ve been heard.

Not accepting my fate was one of the best decisions I could have made, even after countless disappointments and setbacks, despite being told again and again mountains of bad news, I didn’t give up.

We didn’t give up.

I have news …

 

Today I sat in a white office, waiting to see my oncologist to hear an update of my cancer progression. For the first time in the last five years, I held onto the hope I felt countless times, and waited for news.

It’s always bad news …

 

Not this time.

Today, for the first time since my diagnosis, I was told I was stable.

Stable …

There’s no cure for the cancer I have, not at this stage. I was given palliative care, and supposed to await death. I was sent away to die at 24 years old.

I didn’t accept that, I fought. Hard.

Now I’m stable!!! DO YOU KNOW WHAT THIS MEANS?

Stable means that for now I don’t have to continue treatment, I can take a break. Stable means I don’t have to go do any more scans for 6 whole months, 6 months! Stable means I can be in less pain, it means less attacks.

It means hope...

I’m writing this with tears in my eyes, because when I started this journey I just wanted to make a difference in as many peoples lives possible. To prevent suffering like mine. Today I feel that I can finally GIVE hope, the hope I’ve been clinging to so hard for the last few years.

Many of you have followed my journey from the beginning, clinging onto that hope just as hard. I’m finally able to tell you that I have good news, and it feels incredible.

If you’re reading this and you’re going through treatment, if you’re in pain, if you’re suffering, if you’ve just received your diagnosis, wherever you are in your journey… just know that I’ve been there.

Now I’m here.

It’s an amazing thing.

My life will never be normal, and I’m certainly not cured, but this is the first time I can say that I’m able to breathe a little. I don’t have to plan my life around what treatment is next, wondering if it will work, or what side effects it will have. I can just live. For now, I can breathe again.

If you’d like to see more of my journey, and learn about what treatments I’ve done… take a look around my blog. My most recent treatment plan was PRRT, although scary, it definitely made a difference in my condition.

Not giving up saved my life, being heard by the best of doctors for this condition… changed everything.

Never, ever, give up.

Hope is the hardest thing to have, but it’s worth it.

Pheo VS Fabulous 💖

Facebook & instagram: @pheovsfabulous

I said I would never do that again 😭

Posted in adrenal cancer, adrenal insufficiency, Bone marrow, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Cortisol, endocrine, Endocrinology, Health, health advice, health monitor, Immunotherapy, information, inspirational, Love, malignant, Mibg, Montreal, net cancer, nuclear medicine, Octreotide, palliative, pheo mets, pheochromocytoma, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, terminal illness, young cancer, zebra by

But I learned something new again yesterday

these bodies we think are ours?

They’re not.

We think they own them, we signed them over the moment we agreed to save our selves from the disease that’s killing us every day, see how that works?

Cancer: you get to kill me.

Doctors: you get to save me by any means necessary

Me: I TECHNICALLY have a say… but…

Believe me, there is ALWAYS a but

If you start saying no to things, how can they save you by any means necessary?

Anyone can go on from the outside and say there’s always a choice etc etc, and yes there absolutely is. We always have choices, mine often look something like this:

your veins aren’t working for the 189th time in your life, let’s rush you off to a secret room after after having poked you 7 times – and we will surprise you with a procedure you swore you would NEVER.EVER.EVER do Again – (text here)  I wrote about in previous times to GREAT lengths because it caused you such trauma the last therapy during MIBG (and out of all the things you’ve had done.. that’s saying a lot), just the mention of it is traumatic. 

My words aren’t coming out, no one is listening to me. What good would it do anyways? It’s now my only alternative to receive the treatment I’m here for. 

Ever wonder why the term cancer sucks is so popular? Why so many people want to say fuck cancer? ….

this is why. 

It’s because of situations like this, when you are no longer a person, when you no longer have a say in your own body in order to save yourself.. because you know that you’re damned if you do and you’re damned if you don’t. 

Facetune

Part 1: 05/23/2017 – PRRT treatment prep

jugular insertion 

Facetune

But I’m tired now

Facetune

I’ll leave you with something good, as I always do… I was greeted with my Doctor cupcakes (my husband), after some kisses 💋, and pain control, I was ready to start my treatment in a little less agony.

(My clinical trial doctor) is amazing, and does everything to administer the treatment in a comfortable fashion.

The treatment itself was a bit improved VS the last few times.

More on that later once I’m not so traumatized from the morning, and tired & in pain.

FABULLLLUS IS EXHAUSTED. 🖐🏼🏥

more fun trial stuff soon, byeeeeee

#pheovsfabulous

4th..5th time? I’ve lost count! IS a charm 💛✨

Posted in adrenal cancer, adrenal insufficiency, advocate, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Cortisol, Endocrinology, Health, health advice, health monitor, information, inspirational, Love, Mibg, net cancer, nuclear medicine, Octreotide, palliative, pheo mets, pheochromocytoma, positivity, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, terminal illness, the mighty, young cancer, zebra by

There are two things this disease has made me become an expert with:

learning how to be okay with never leaving your little comfy space (or rather being confined to it). 

or

constantly leaving that comfort zone you’ve been confined to for the purpose of being EVERYTHING but comfortable. 

Luckily I’ve acquired the most important lesson of my own, & that was to stay fabulous no matter what. Have YOU guys figured out the meaning of ‘Staying Fabulous’ yet?

This past year my health has declined significantly despite doing the most treatments packed into one time frame ever. 

With that said, my wardrobe mostly consists of comfy pyjamas, my hair is done by my husband (bless his heart). Speaking of hair, let’s be real… I can’t even wash my own hair, there I go again painting a whole different picture for you guys. I have care almost every day, and a lot of things I’m unable to do. Fabulous means SO many different things, but I still haven’t lost my fabulous, even if I’ve lost my ability to do all of these things by myself.

When I choose to do my makeup it takes me sometimes close to 5 hours or more, but I don’t mind because it’s every couple of months or so – and it makes me SO happy! Despite what I share in photos, we create a picture to make others happy as well.

What matters is the love, the laughter, the same outlook I’ve promised to have from the beginning hasn’t changed.

My message is being delivered with the same sparkle (most days)  ☺️✨ because that’s what PHEO VS FABULOUS is all about.

Regardless of everything that we have been going through to make it here, we’re here, and we feel just as grateful as ever.

When we were challenged, we leaned on each other for the support we so badly needed.

We felt so blessed for the support we constantly receive.

It isn’t in me to give up, the only thing to do now is move forward. To unfortunately just keep receiving another treatment and see what’s next.

What IS next you ask? 

Remember option 1 or 2? Well, today is # 2. Actually this week is a bit of both… except today is …

leaving the spot I’m most comfortable in. (You know, normally I’m confined to my house)

AND, this week is being confined to a space … but unfortunately not the space I’m most comfortable in, quite the opposite actually – I wouldn’t call the hospital or a radiation room my comfort zone. 🏥☠️

BUT that’s the life of being terminally ill 😷 treatments, clinical trials, being radioactive, a girls gotta do what a girls gotta do! ✌🏼🏥👸🏻

After all that jazz I will be laying in the big spaceship scans later in the week… pretending I’m getting a facial in my Dream bungalow house in the trees that has NO stairs, one of those swim spa pools where my poor body can float all year round, and a little all year round sunroom for my puppies & me to relax when I’m feeling down  🏡 sounds wonderful right? My mind is escaping there already. 

Dreaming, dreaming, dreaming ✨✨✨

Ok, time to glow friends 👋🏽😄

Tuesday is the actual day for treatment, PS 🏥☢️ In case you guys forgot what treatment it is, it’s the PRRT clinical trial  – this will be my fourth round.

(Which also happens to be serge and my 7 year anniversary 😑, which also happens to somehow ALWAYS be spent in the hospital 😪😭)

Bye everybody!

🛣🚘

IMG_5823

And we leave for round 3 – PRRT

Posted in advocate, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Endocrinology, Health, information, inspirational, net cancer, Octreotide, palliative, pheo mets, pheochromocytoma, PRRT, Radiation, rare disease, surviving cancer, terminal illness, World cancer day, young cancer, zebra by

After having said all I have to say in my last Post, gotten that off my chest… everything I’ve been feeling over the past few days…

we are here. At the hospital that will give me my third round of my clinical trial – PRRT 

We travelled yesterday several hours into the night to eventually arrive to the hospital that will eventually administer the experimental liquids that maybe or maybe will not help me diminish some of this pain I’ve been feeling. Maybe it will do nothing. Perhaps it will make me worse. I don’t know.

What I do know is that I was absolutely terrified the last few days, thinking about just driving here and adding to my state of pain, and then actually having to endure treatment?! HA!

of course then having to even consider the next few months…. ugh, my worsening body, and the NEXT round. I just can’t.

I’m not one to cry but it hurts so much lately, kidney stones, complications, the attacks, everything seems to compile at once and just want to break you down.

💊💉🏥😷😭

Well I am broken, but I’m still going to take whatever pieces of me are left and fight this awful cancer and get this Treatment done, that’s why they call it ROUND 3 – they’re throwing me in the ring with some help… well i always win. I always win. I always win. 

🙏🏼👊🏼

To my person,
my eyes reflect the longing for the moments we should have had together and will never see, but love for the time spent together everyday, yet I feel such pain when you cherish the simplicity in our mundane routine, and even more pain when I know that you feel everything I feel.

I love you more than words can ever share, and I wish to go with you as many places as we were ever intended to go, with me in a state where I can enjoy it – this can’t be it. This pain cannot be it.

But if it is… my gift to you is that you were the only one who truly saw what this disease did to me throughout this whole time. The relentless pain of this 24/7 psychological and physical warfare, you’re my number one first. Before anything else, you’re the one who I fight for and dig deep to find my last smile for each time, because you’re the one who’s always there making me laugh.

So if it ends up that this it, things don’t go our way and I’m still in so much pain – just know that I will dig deep and find my smile for you baby.

like you say… we’re going through something so beautiful, when do you ever get to experience this?
💞✨🙏🏼

To my beautiful wife,
We have done allot…
But I had so much more I would of loved to do. Just spending time with you is allready a gift. And one day we will do lots. So let’s go get you in to shape. Quebec here we come. I am bringing you my most precious diamond it’s a bit of a diamond in the rough health wise so please polish it up verry well so I can take her all around the world and show how priceless she is.
💗💗💗

I love you baby!!!

PHEO VS FABULOUS

 

Facetune

I really need your help…Rare Disease Day

Posted in adrenal cancer, adrenal insufficiency, advocate, cancer, cancer blogger, cancer fabulous, Cancer treatment, Chronic illness, chronic pain, Clinical trial, Endocrinology, Health, health advice, information, inspirational, net cancer, palliative, pheo mets, pheochromocytoma, positivity, Radiation, rare disease, Rare disease day, surviving cancer, terminal illness, World cancer day, young cancer, zebra by

I’m dying

but you already knew that – I just had to grab your attention

The number one complaint you will hear from patients who suffered from being misdiagnosed or being undiagnosed is that nobody listened to them

Why?

Because they were “too rare” 

These are the people who then had to hear these words, the diagnosis that shattered their entire world… Just much too late for it to count …

“There’s no cure, we can only manage the symptoms and pain ”

“With the limited information we have.. People live for about 1-5 years” 

“it’s 1 in 5 million once it spreads, I’ve never seen it personally, you’re very rare!” 

It’s Rare Disease Day

I thought that I would offer a different perspective – one that could explain what this day means better than anyone, and why it’s so important to share this message.

Today is rare disease day, they call them zebras. 
Zebras are the last diseases that doctors look for. The obvious ones are called Horses, those are the ones the Doctors are used too. So they get to cure those on time.

I have a Zebra at home so it’s the one the doctors didn’t catch in time. She is my beautiful wife 26 years old she is what we call paleative.

My wish is that the doctors would of listened when she was telling them that her illness was back and did proper testing instead of blaming it on anxiety, it would of been treatable she would of had 1 thumor instead of 16 impossible to treat.

So please doctors I beg you to listen to your Zebras when they say they know their illness is back and don’t look at the ‘Horse’ if they are Zebras. Continue on treating them like Zebras.

If you have a Zebra in your family fight for them don’t let the doctors see them as Horses.

I’m very happy of how I’ve taken care of you since you were diagnosed butt I really regret the way I did not react before. If I would of known better it would of been different. I know it’s not just my fault but I still carry with me a lot of blame, I always think if I had known more back then I would have fought harder for you, if I just would have known there were more tests, I trusted in them and I shouldn’t have. I would have never taken no for an answer, we just didn’t know what more to do. We didn’t know what to research for, we didn’t know we had to. And I’m so Sorry baby😪

Now we are doing everything we didn’t know how to do back then, and it’s helping others. I’m so proud of you. You will help so many other people not feel the way we did that day. I love you so much!!

Thank you for reading!!!

This is what it’s all about, to hopefully help rare diseases like mine (pheochromocytoma) cancer become less of an unknown disease to all involved. Eventually making these misdiagnoses, and undiagnosed patients less of a problem.

Help us become less rare.

Help keep sharing the information. 

Every day I struggle through my pain to write any little detail so that there will finally be information available – any information available to others about this rare disease. Explain what it is to participate in treatments, procedures, and rare trials real time…I patiently repeat myself as I explain what pheochromocytoma is over and over again to anyone and everyone.

All I ask is that you share my message further, just SHARE!

I have one common goal in mind… help make this disease less painful for the next person. Make this disease less of a struggle for the next family, less of a mystery for the next patient, more information available to the next medical team, and hopefully…

Whatever they can do to give us with more time, and better quality of life.

I know there’s no cure, but it would be really nice to not suffer so much while we’re waiting.

There’s one single day for thousands of rare diseases to become less rare and get the awareness, funding, and exposure they are looking for – all crammed into one 24 hour period. Why is that? 


Are we less important than someone who has a different disease? Am I dying any differently? 

This is why I need your help, today and everyday… but ESPECIALLY today, let’s make today count for all of us zebras.

Let’s make our February 28th 2017 Rare Disease Day worth it!

 img_4599

Share to become less rare !

Pheo VS Fabulous
❤

#pheovsfabulous

 

 

 

 

 

Round 2 -Clinical Trial

Posted in advocate, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, endocrine, Endocrinology, Health, information, net cancer, nuclear medicine, Octreotide, palliative, pheochromocytoma, PRRT, Radiation, rare disease, surviving cancer, terminal illness, young cancer, zebra by

It’s that time again…

Trying to figure out how we will pack all of my comforts into a couple of bags, and how we will leave behind everything important to me in my life.

Secretly wondering in the back of my mind… Will I return?

Catching glimpses at one another, knowing we’re thinking the same thing. Instead, distracting ourselves by packing those couple of bags… hating that it’s ‘that’ time again. 

 

It’s been a really tough couple of months, since the first treatment.

Specifically the last couple of weeks have been especially hard. I don’t know why, and we have not been able to figure it out. Going into treatment in this condition? Not the most comforting feeling, I’ve never went into a treatment feeling physically inadequate, this will be a first. I’ve never went into a procedure with a mystery looming over me, wondering…

“What’s wrong with me?”

“Why do I feel like this?”

It’s different. 

We’re close to leaving now, I can hear Serge packing the last few things in the truck, the dogs nervous feet scampering around, so many hours ahead of us to go…

Treatment will be administered on Tuesday, and then all of the protocols will be followed the rest of the week, scans, scans, and more extremely long and painfully still scans. Putting us leaving around Saturday a week later.

This is what I know for now, I am still gathering information for my longer informative post about PRRT. I figured since I’m doing the second round maybe it’s best I wait. Also, I just haven’t felt well enough to write anything remotely informative 😂🤓 that requires brain power = brain shut down= eyes go bye bye.

Okay, time for me to get dressed, and that includes putting my smile on. It’s time for a ROAD TRIP!!! 😁

Talk to y’all later 😝👻💀💩☠

Pheo VS Fabulous

XOX

 

 

Can·cer & Quality of Life

Posted in adrenal insufficiency, advocate, cancer, cancer blogger, cancer fabulous, Cancer treatment, Chronic illness, chronic pain, Clinical trial, Endocrinology, Health, health advice, information, net cancer, nuclear medicine, Octreotide, palliative, pheochromocytoma, positivity, PRRT, Radiation, rare disease, surviving cancer, terminal illness, young cancer by

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.

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?

I used to just see it as 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.

Until you live them, you are intimate with each word, and 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.

 

This phrase, ‘quality of life’, it’s meant to bring a sense of comfort, a level of respect,
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.

There’s the first problem: expectations. If we don’t adjust our own expectations and EXPECT this disease to change us, this will be the first disappointment, the very first of many tears, and the beginning of the harsh reality which is called life with cancer.

We cannot simply continue to live our pre-cancer, pre-adrenal insufficiency, post surgery, post treatment, etc etc, the exact same way we did before…
right?

Well, I kinda did. I think we all do in some respects, and that’s normal.
The difficulty is realizing where you can no longer do so,
and 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 when someone admires your strength. 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, so 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 procedure I’m left feeling worse and can do less…

How am I not supposed to lose hope?

FAST FORWARD a few months… 

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…

OVERCOME 

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

After all… how am I supposed to have any sort of life if I am not going to accept the fact that my life is different? 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. 


The fact that I have woken up each day with a smile, and gone to bed each night the same way…

ADAPTING to each new circumstance, OVERCOMING each new situation.

Most importantly, understanding that even the smallest victories are worth celebrating, simple joys are to be found and appreciated everyday, because these ‘small’ and ‘simple’ things to someone else… probably mean the world to you.

Remember, although your life is different… it’s YOUR life, and these are the things that make the quality of your living.

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 am, but hopefully not have to suffer quite as much to get there.

Just in the last two months, having another treatment to control my disease has confined me to my upstairs floor, i’ve suffered the worst pain so far this disease has given me. It’s made me question my quality of life, since being palliative, I’m supposed to be as comfortable as possible, and enjoy my quality of life. Instead I’ve been writhing in pain, stuck in a bed, unable to leave the upstairs floor of my house, lonely, defeated.

It made me question…
“Now how will we get through this one?”

And we did.

Because…

Cancer makes you… ADAPT, OVERCOME.

Months ago, my perception of having home care and setting up a bedroom on my bottom floor?

My response would have been: ARE YOU NUTS? I’m not doing that! Why would I do that!?
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)…

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Remember those simple joys? Small victories?

Well THIS was the greatest joy, a godsend, a MASSIVE victory!

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I can now see out a window, I 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 was able to have a christmas tree, I can drift off to sleep right in front of my fire-place,
watch the snow fall down… 

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That smile? It was fading slightly for the first time when I was confined upstairs for all those days, it was still there… but it just wasn’t quite as bright.

That’s what quality of life is

Those aren’t just words, This is MY life

And this smile? It’s brighter than ever now…

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 🙂

Pheo VS Fabulous ❤
xox

 

 

 

 

 

 

 

 

 

 

 

 

 

Leaving today…

Posted in adrenal cancer, adrenal insufficiency, advocate, Bone marrow, cancer, cancer blogger, cancer fabulous, cancer scan, Cancer treatment, Chronic illness, Clinical trial, Endocrinology, Health, health advice, information, Mibg, MUHC, net cancer, nuclear medicine, Octreotide, pheo mets, pheochromocytoma, positivity, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, young cancer, zebra by

Oh hey guys 👋🏼

You may have to do a slight refresher from my last post, but otherwise I’m going to keep it short. I will definitely go more in detail about what’s to come soon…

I’m just so exhausted and can barely keep my eyes open while I’m typing and covered in my favorite fuzzy blankets and every pink and purple unicorn pillow/stuffed animal I own

🦄✨💜

You guessed it…… LONG DISTANCE ROAD TRIP!

To where you ask? To do what you might be wondering? We will get to all of that!

First off, I’m kind of sorry and not sorry for dropping off the planet for a little while. Since I’ve started at home chemo that is EVERYDAY, twice a day, it’s a bit hard to want to then blog about cancer when you have very little left to give. What I did have left, I ended up having to use to prepare for the upcoming cancer CLINICAL TRIAL 👏🏼  Yes, that’s a whole lot of cancer. Which we will get more into when I have more time/energy. So you can see why I am sooooo sleepy 😴😷😪

Remember back when we discussed doing the first clinical trial? The very exclusive nuclear scan that was only being done on a limited group of people to see if their tumors would light up and be eligible for ANOTHER clinical trial?

Basically, it was a special scan to see if you could participate in another form of radiation type therapy. Well… Here’s a recap of everything.

So I did that, and passed the test! My tumors lit up, lots of them, so… That means I can have the special radiation called PRRT radiotherapy. (Similar to what I did back in January, the MIBG radiotherapy) but still different.

Don’t worry, I’ll be writing all about this when I’m not so depleted.

I just wanted everyone to know what was happening so far. This week has been very overwhelming, everything has been so last minute, we were informed of my acceptance within a few days of admittance, and all I can say is how grateful I am to not be a beginner at this whole treatment thing. This last minute…. We would be FREAKING out way more, but we’re veterans, so we’re only freaking out on the inside….. A little…. Ha

-This morning we left, today is a hours and hours full of travel where we will eventually make it to our hotel and check in, and spend our last night together  😰😝

– Tomorrow (Monday) I unfortunately get checked into the hospital, alone. A new unknown hospital….! 😳🏥

(I have to start getting prepped with special meds, since the treatment will make my pheo tumors angry. Hopefully by being admitted into the hospital and being prepped with special medications, this will lessen my chances of complications)

– Tuesday @ 7:30am I begin to get prepped for treatment ⚗☠

-Tuesday @ 9am treatment commence! 🎉✨☠

The rest of the week is unknown, I do know I will be less radioactive this time in comparison to last time’s treatment. Which means I shouldn’t be isolated as long.

That’s all for now.

Will share more about our previous trip to Quebec City to prep for the trial, acceptance, and WHAT IS PRRT?

Until then…

Stay fab

💖

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So many images!

Posted in Brain, cancer, cancer fabulous, cancer scan, Cancer treatment, Chronic illness, Endocrinology, Health, Mibg, Montreal, MRI, net cancer, nuclear medicine, pheochromocytoma, positivity, Radiation, rare disease, surviving cancer by

Now that my MIBG scan is over, thank goodness, I’m onto more conventional imaging now.

What are you doing on YOUR Saturday? I’m having my beautiful brains photographed, jealous?! 📸

That’s right, it’s MRI time!

Today will be my brain, because who doesn’t want to see inside this fabulous mind? 😉 Ha!

Tuesday will be back to the normal abdomen scan, to see the good old tumors we know and love, (wait, just kidding, we hate you!) multiple imaging types allows the medical team to compare each type of scan to one another and get different views of the tumors.

Example: MIBG relies on radioactive uptake in order to visualize the tumors, if my tumor cells do not absorb the radioactive iodine – there will not be a clear picture as to where my tumors are or where they have progressed.

MRI is a great scan for most people, but not all – not all pheochromocytomas clearly show up on conventional imaging such as MRI, or CT. Sometimes it’s done with contrast, sometimes it’s done without.

SO MANY OPTIONS!

So this is why we must do multiple types of scans, imaging types, and so on, in order to make sure we have a clear view of what we are working with – to see if there are any tumors hiding in spots we didn’t see before, spreading in other areas, and just maintaining a clear view so we can properly manage the disease with the best possible options.

After all… how can you control something if you’re not aware it’s there❔

So, a friendly reminder if you are a patient with metastatic disease: it is important to have a multi disciplinary team with a great endocrinologist who understands this complicated disease, and have everyone working at full throttle in order to help manage these little grenades. It is VERY quick to become out of control, we already don’t have a cure, so we need to do our best to work with ‘managing’ it, yes⁉️

I have been presenting with some pretty different symptoms in the past few weeks, so to be on the safe side – I must have my brain scanned to see if there’s anything in there 👀

Be on the lookout for part 2 of my MIBG scan breakdown, it was a particularly hard day for me and I have been too tired to post a proper detailed post to explain to my fellow pheo friends how an MIBG scan works, what to expect, etc 🤓

Alright, off to the scanner I go! ✌🏼️✨💋

Pheo VS Fabulous

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