I really need your help…Rare Disease Day

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!

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Share to become less rare !

Pheo VS Fabulous

#pheovsfabulous

 

 

 

 

 

The Mighty -Can·cer & Quality of Life

What ‘Quality of Life’ Means To Me as I Adapt to Cancer

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https://themighty.com/2017/02/what-quality-of-life-means-in-my-life-with-cancer/

Some of you may remember at the end of January I had written a piece about quality of life when living with cancer for my blog. It was an intimate article that focused on the body and mind’s adaption process when overcoming each new phase of your new life, and the quality that you now have to find within it.

I’m proud to say it’s also just been published on the Mighty as well. You can follow the link above to read it, and please share.

It’s at times like this I find quality within my own life, and I’m thankful to be able to share it.

Pheo VS Fabulous

xox

Round 2 -Clinical Trial

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

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

 

 

 

 

 

 

 

 

 

 

 

 

 

Day 42, M.I.A

I really must apologize for those of you who follow my blog, and expect a semi regular posting of updates. I honestly do get an overwhelming feeling of responsibility towards my blog, to the people who I am sharing with. My goal was to be able to share EVERY part of my journey while it was happening.

I think I was a bit ambitious… as most things are that I set out to do.
Not realizing that every year, month, even days, cancer will continue to make my life and the things in it that I once thought ‘simple’…a little more of a challenge. 

Most of you have probably gathered from my last couple of posts
“Leaving Today” & “What’s going on – 2016” that I am participating
in a radiotherapy clinical trial, called PRRT. As of October, things got a little bit busy…
When November hit, it was like an instant ON switch flipped, then someone pressed GO!
Everything just got out of control, things got real. 

You never know just how difficult something will be until you actually go through it,
that’s why here I am writing to you all 42 days post treatment, only now having the mental stamina and energy in order to begin sharing, thinking, or doing anything besides …. well, suffering. Did I say suffering? I meant convalescing. Hehe.. I may even be getting some of my sarcasm back.

So, the point is… I wanted to let everyone know that although I am not what you would call ‘okay’, I am here, and doing my best to adapt to this new phase of treatment. I figured since I am now in a place where I can finally see the screen without the words being blurry, or stay awake for more than 5 minutes in a row, and not be distracted by the pain of my kidneys feeling like they’re going to erupt… I should give a small update of where I am currently. That might be nice, since I am not quite at the point where I am able to give the breakdown of what PRRT therapy IS yet & all of the details of what it entails
(future post *coming soon* I PROMISE!) 

Update:
Since getting home from having radioactive therapy mid November… 
 
-I’ve been bed ridden
-Unable to leave my upper floor
(well, I’ve managed to now leave the upstairs a total of 3 times in 42 days)
-My body has went through every side effect and stage of pain imaginable listed as a potential option, and I think made up it’s own list to add 
-We have had to get a team of people to help with my care 
-I am starting to feel a tiny bit better, I’m no longer having pheo attacks every half hour (*more like every few hours now*) and I can eat now without nausea most of the time, I am able to go pee without feeling like I’m going to have a heart attack afterwards (well, SOMETIMES)…!, we are making a bit of progress. I won’t get too far ahead of myself here. 

Of course when I give my detailed post about PRRT I will write way more about my symptoms, side effects, and current state, super in depth by date and comparisons. Right now I just wanted to let everyone know that this has been incredibly tough on me and this is the reason why I have been completely unable to communicate.

This treatment is done in rounds, which means I am coming up on my next one in January, probably why I am starting to feel a little bit better, ha! My body is finally to begin to have a bit of strength for the next blast.

Nonetheless, this is where we are currently, and why I have been unable to communicate with the rest of the world. Those of you who have kept in contact with me despite my hiding out, bless you and your concerns

If I haven’t been able to answer you or gotten back to you, please know that I am thinking about you and appreciate your words, prayers, and messages so so much.
I have read every single one of them.

I love you all, 

Fabulous 
XOX 

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Coming soon… 
A detailed overview of my PRRT clinical trial

Remedy for the rare: PRRT (Overview) 

Leaving today…

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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Time..

The last post I wrote was filling everyone in on what’s been going on these past few months. Besides that I know you haven’t heard much from me.

I wish I had more time and energy to write… Actually, if I am completely honest, I just wish I had more time and energy.

When your time becomes scrambled into appointments instead of days, cancer treatments instead of months, it’s bound to become exhausting… and all consuming.

It will be 2 years on the 10th of October that I’ll have heard the words that changed my life, and since then my life has been a constant whirlwind of how to’s:

-how to become educated on an incredibly rare disease
-how to become my own advocate
-how to save my own life
-how to fight against a cancer that will always win
-how to not lose hope
-how to help others through my own experience
-how to not let this cancer take away who I am
-how to stay FABULOUS

I touched briefly in my latest post about starting chemo injections, another new treatment. I am so fortunate to have this treatment available to me, and incredibly blessed to have a doctor who is always working with me to be one step ahead, but it doesn’t come without its share of side effects.

This is partly why you haven’t heard much from me, because it’s been quite hard to settle into yet another new treatment regimen. One that is unique – every day, multiple injections a day, without any reprieve.

I can no longer choose when I want to be reminded of this cancer, I am now surrounded by it 24 hours a day/7 days a week.

I wake up to the pain of it, and I go to bed to the pain and discomfort of it.

The very few times I am feeling ‘okay’, I definitely want to spend this precious time doing things that bring me happiness, joy, and relaxation.

Before we know it I will be heading in again for another massive radiotherapy treatment, this time even more intimidating because it’s a clinical trial setting.

So I’ve decided that after two years of
becoming educated on my rare disease,
figuring out how to save my own life,
fighting against a cancer that will inevitably win,
holding onto hope and sharing that hope with others like me,
and most of all… finding ways to stay fabulous after EVERYTHING that’s happened
….
it’s time to focus on one thing and one thing only… 

BEING fabulous!

I wrote this on the first page of my blog – the day Pheo VS Fabulous was born:

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 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.

 So that’s what I am going to be doing, focusing on BEING fabulous, strong, and positive…. despite the odds! 😉 

Using the little time I do have doing joyful things, take a small break from the PHEO, and focus more on the FAB…

Since I can’t exactly fly across the world, let alone walk up the stairs… haha, I’ve started my little happiness scale by decorating pumpkins with my family, and spending time with the ones I love the most. I love fall, so this means everything to me.

Enjoy!

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PHEO vs Fab…

It takes hours of pain and struggle to achieve ‘beauty’ at the beginning of my day –

It takes just seconds and not even the slightest struggle for my body to achieve unimaginable ‘pain’ at the end.

This is living with pheochromocytoma cancer.

This is how quick it is – seconds, minutes…. Bright, cheery, and ready to take on the world doesn’t matter when you’re hit with searing pain and an overdose of adrenaline hormones. Your body assaulted so all it knows how to do is scream, cry, or vomit in defense. How quickly things can change. Every day.                            From that ‘normal’ woman full of life with the big sparkly smile to the woman who can’t move in her bed, with dark eyes, tears of pain, sweat, and a constant reminder that no matter how positive she is – pheo doesn’t care. 

I allow for what I want people to see, but it’s important to know that although I often choose to share only one perception, there is another.

I choose to share the bright smiles, and focus on the good. This is often just a small part of my day, despite me wanting it to be all the time – it’s out of my control.

Unfortunately the ‘other’ side far outweighs the one I choose to share, which is why I choose to shine a light on the brighter side of things, perhaps because it’s the one that needs a bit more love and attention in order to stay bright and stay as I like to call it – “fab”.

As much as I wish sometimes people would understand or really “get it”, I know that it’s really just an impossible situation to get. You simply cannot be within someone else’s body and feel their exact amount pain. I find myself pleased when someone doesn’t get it, why would I even want them to?

It’s easy for us to SAY “5 times in 12 days we have spent in the hospital completing tests and procedures, each time approximately a 12 hour day (actually feeling grateful if we made it back under the 12 hour mark)”

Of course I won’t tell you about the fact that I only got 1.5-2 hours sleep the night before, either because we had to get up so early or simply because my brain wouldn’t allow me to sleep. Having to think about yet another disappointing test result, or even worse, my cancer spreading to new parts of my body and becoming completely out of control and suddenly being the textbook statistic I was told about when diagnosed.

I won’t tell you too much about how when I do wake up I have to take a special medication immediately for cancer patients made to prevent vomiting, if I haven’t already, from all of the extra adrenaline that surges through my body at it’s highest level (when you wake up).

I won’t share with you how while I’m trying to put my makeup on to help hide the puffiness the steroids cause (the ones I have to take daily to live) my hands are shaking like I’m experiencing an internal earthquake, and my heart feels like it’s pumping through cement.

I would rather not share that my Fitbit bracelet thinks that me sitting down doing my makeup, literally thinks that I am in a FULL ON marathon activity, and is measuring me for all sorts of neat high calorie exercises classifications because my heart is in the highest modes possible, doing nothing. By the time I’m done, according to my data, I’ve essentially ran, biked, and maybe even gone for a high speed swim.

I don’t mention the fact that my body passes out from constantly depleting its cortisol the entire way there, so now we have to continuously guess when I am in need of the aforementioned life saving steroids (so, pretend we are an adrenal gland).

I neglect to discuss the fact that certain tests are incredibly hard on me, physically and mentally. Hate needles? That’s only the beginning, I’m stabbed constantly. Hate being enclosed in tight spaces? No choice. There’s a lot to these procedures, having a rare disease like pheochromocytoma cancer there’s a lot of questions to answer, a ton of things to explain, on top of that having subsequent conditions such as adrenal insufficiency, allergies, etc, it’s quite complicated and stressful.

I don’t usually mention that some procedures can also evoke certain feelings and traumatic memories suddenly that I don’t wish to feel or remember, making it more difficult to get through the day when you’ve got so many more hours to go. Especially when you really haven’t had any positive news since you’ve been diagnosed – making it even more and more difficult to focus on the “bright” side sometimes.

I won’t tell you too much about how once I’m done I can hardly move, my body isn’t very nice to me on the best of days, but after laying in these hard machines unable to move for several minutes, I don’t know if painful is enough to describe it.

I wouldn’t normally share that on the way back home my body passes out yet again from the exhaustion, and the amount of pain it’s suffered through. I always think that once I am home, I am in the clear, we have done everything right – we have controlled all of the medications right, we have managed everything properly. I will be fine this time, I just need some rest. I always share how I am okay, and that I am going to be just fine and go to sleep.

What I don’t tell you is the moment I think I can just close my eyes, rest my body, and get sleep I need… I often experience hours more physical suffering into the night. Until I can get this under control, it doesn’t allow me to sleep, it doesn’t allow me to rest, I shut my eyes only to cry tears of absolute agony.

It takes seconds to go from perfectly ‘normal’ to what I’ve described at any given time several times a day. Regardless of tests, hospital appointments, procedures, or things that may further provoke and push my condition to an extreme, these are examples of what I don’t share when I share the most.

‘Normal’ days are no exception – these activities are just as hard, and have the same outcome. Taking a shower, climbing the stairs,  trying to go to the grocery store, visit a friend or family member, go for a walk down down my street, they all have the same result. I know I will suffer the consequences, so I must choose everything I do with care, and plan every move carefully.

That is a real depiction of my day with this disease, and it doesn’t ever stop reminding me.  I often focus on the ‘fabulous’, find the good, and try and empower others through my experience with this disease not just focusing on the obvious struggle. It’s important to talk about both sides, not just for me, but for everyone who’s living with this just as I am.

However, every now and again… I think it’s important to mention the pheo, since I think I’m pretty fabulous 🖐🏻

PHEO VS Fabulous 💛✨

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MRI round two

So we did the brain a couple days ago, time for the abdomen! I had a two day break, (woooo) 😉

My body and mind is exhausted, but I got up this morning at 5:30am and despite feeling like I was going to vomit, having tremors, my heart pounding non stop, and non stop pain – I decided I wanted to have glowing mermaid makeup to make me in a good mood.

Cause, how could it not?! ✨💄🐚☄

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My brain MRI was very….. interesting 😏 it’s similar today as far as the prep but it’s a different body part and different positioning in the machine. I’ll be having the contrast injection again so I have to be fasting (I cannot eat or drink liquids) since last night 👎🏻😑 for the brain I had to wear a contraption on my head to secure the picture they would get, and since the machine is literally SO SMALL and tightly enclosed – you have to close your eyes for the entire 35-40mins or you will basically feel like you’re being buried alive with ear plugs and things yelling at you really loud. (MRI noises)

So today it’s the same thing, except to visualize my stomach tumors – there’s one difference, I have to get an IV for the gado contrast, and ALSO this awful injection they always shoot me with directly in the muscle of my arm. It’s made to stop my intestines completely for the photo, for a half hour. (Weird, right⁉️)

They have to lay another contraption on top of my stomach, this is my least favorite part since my stomach is super sensitive where I can’t even touch it because of my surgeries and hypersensitivity neuropathic pain 😫, SOOOO yeah🖐🏻🖐🏻🖐🏻🆘🚫

Hopefully my body won’t do anything funny today, like pass out a bunch of times from (cortisol low) 💊💊💊  or make me suffer TOO much pain. I’ve already had a huge pain blast on the way here and had my share of pheo attacks just getting ready 😡 , that’s ENOUGH k?! 👇🏼 putting my finger down. Ha

So I have a very special gift I was able to bring with me today, it was hand made especially for me to symbolize a rare zebra butterfly, (as many of you know us pheo fighters are called zebras because we are rare!) and she perfectly designed it to be pink, sparkly, and FABULOUS! Just to make sure I would have something with me today for extra good vibes and sparkle ✌🏼️✨💗

Did I mention this amazing woman was a stranger to me 2 weeks ago? People’s kindness continues to surprise me, I am so grateful to be surrounded by such love and FAB! 💋

Well, it’s almost that time to go and get tortured (haha, kidding, kinda……..)

Pheo VS Fabulous 💗

So many images!

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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