Category Archives: Mibg

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

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

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

Such as, did I just type a sentence?

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

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

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

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

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

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

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

You’re telling me.

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

This isn’t Just MY disease anymore.

This can’t be happening.

This can’t be happening.

This can’t be happening.

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

But before I get into any of that..

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

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

I would never distance myself like this by choice.

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

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

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

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

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

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

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

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

*insert laughter attempt here*

I thought I had enough as well.

WELL Apparently not.

This is what I’ve been getting at.

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

WELCOME TO THE DANGERS OF BEING RARE

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

That part was a little depressing.

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

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

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

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

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

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

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

https://youtu.be/9LJGcxTB4u0

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

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

📸 @pheovsfabulous

THE Unicorn 🦄

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

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

💖

image

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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MIBG & Iodine Allergy

Posted in adrenal cancer, adrenal insufficiency, advocate, cancer, cancer blogger, cancer scan, Cancer treatment, Chronic illness, Endocrinology, Health, health advice, information, Mibg, net cancer, nuclear medicine, pheochromocytoma, Radiation, rare disease, surviving cancer, terminal illness, young cancer by

You can kind of call me a pro scanner by now, I’ve only done like a thousand. (Okay, maybe not 1000, but A LOT)

My insides like taking pictures just as much as my outside.

It’s that time again, MIBG time! An MIBG is specifically designed to visualize certain types of neuroendocrine tumors like mine, pheochromocytoma being the focus of my discussion as this is the cancer I have.

As many of you know – MIBG is also used as a therapeutic agent as well, I just had my radioactive treatment in January, and this scan is just another segment of my follow up protocol before we dive into the next steps of my treatment.

For those of you who are about to have an MIBG scan and are wondering what it’s all about, I figured I would give you the deets! I even make it more fun and complicates as always as I have an allergy to iodine & contrast – so I’ll explain what the protocol is when this is the case.

MIBG Scan 

Alright pheo friends, your nuclear medical centre or cancer centre should call you and book a date for your injection, and then you will have your scan date booked anywhere from 2-3 days later.

Example:

Monday – Injection     Thursday – MIBG Scan

Why?

The MIBG product takes time to attach to the tumor cells.

BEFORE you go in for your injection they will need to send a prescription of thyroid blocker to your local pharmacy.

The protocol for the thyroid blocker varies depending on the type given, for example – because I have an allergy to iodine – I am given potassium perchlorate and so the timing and protocol differs for this product from Lugol’s iodine. Please refer to your doctor’s instruction when taking your thyroid blocker, but ALWAYS ensure you take your thyroid blocker before your scan!!!  

NO EXCEPTIONS! 

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Day 1: Go into receive your dose of radioactive “glow” as I like to call it, ha! We have to think positive now don’t we?  I have to start taking Benadryl early in the morning (around 6am) for a 10pm injection, and then continue taking 50mg doses every 6hours for 24-48hours. I have to stay and be monitored after receiving my injection for at least an hour and make sure I don’t have any initial reaction while at the hospital, and if I am okay, I can go home and continue with my allergy protocol.

You won’t be scanned on this day, just poked and injected with some good old radioactive mixtures, it will do it’s magic and hopefully find it’s way to your tumor cells… and then you will go back in 2-3 days (whenever your appt is) and complete your actual scanning portion!

(Edit- Question answered: This portion isn’t like a PET scan where you will spend at least an hour with a warm blanket in that beautiful reclining chair, it is a very quick injection of radioactive material, (in a comfy recliner though!) 😜

There is no fasting required for an MIBG scan, or injection, neither part 1 or 2 requires fasting protocol unless your doctor instructs otherwise, but out of the 5+ times, I have never.

There are SOME medications they may require you stop taking before your scan, the nuclear medicine team will discuss this with your endocrinologist, surgeon, oncologist, whoever ordered the scan for you. Some medications can interfere with the result of the scan, it can lead to false results as the test relies on norepinephrine uptake and some medications can interfere with this pathway. They will inform you if you need to or not.

I’m sure you can ask for a blanket if you’re cold, they’re always such sweethearts. The only “waiting period” is for when you have an allergy, they typically ask you to wait to be monitored, because my nuclear medicine team is amazing, I get a comfy stretcher and a warm blanket 😉 I hope this answers your questions Cathy!  💛

Tomorrow (or today rather, as I have to be up in a couple of hours to go…!) I will be doing part 2 of my MIBG scan, I will update you on the exciting details of the scanning portion.

If you have questions, leave them down below!

I forgot the most important part… don’t forget to smile, laugh, and stay fab!

❤

MIBG - Injection

Dear husband…

Posted in adrenal insufficiency, cancer, cancer fabulous, Cancer treatment, Caregiver, Chronic illness, Endocrinology, Health, inspirational, Love, Mibg, net cancer, pheochromocytoma, positivity, Radiation, rare disease, surviving cancer, terminal illness, young cancer, zebra by

My husband made me cry today. Not intentionally, in a beautiful way that just can’t be controlled no matter how hard you try, the last 4 months of emotions came pouring out of me, just by sharing my post I had written yesterday about my experience with MIBG. He never leaves my side, he takes care of me 24hours a day, meanwhile balancing his worsening illness and doctors as well. We are making it work, but we certainly appreciate each moment. We love each other so much it’s impossible to describe, but he does a pretty good job at it in his super adorable French way:

Wow baby.
This took a long time to be able to write this post. Finaly you where able too. You are so strong Miranda I hope that you can help others with this post. Butt I hope it helped you by writing what was in your heart. I know how hard this was I was next to you while you where writing this story. How tired and all the attacks you had while doing it. God I’m lucky to have you near me.
Thank you lord to give her the streingth to do so. You inspire me to be a better person and I pray for allot of years with you. We don’t know how many we have butt let’s make them the best we can.
I love you so so Mutch. Please stay with me for ever and ever. I could not imagine not taking care of you. It would kill me. You are so amaysing. And a joy to be with and to love. I have to stop or I’ll cry like a baby.
Love you baby.
God your special. 💋💋💋💋💋💋💗💋💋💋💋💗

Serge said to me despite the adversity of what we have experience, what we get to experience together is the most beautiful thing anyone will ever get to share, and we are so blessed we are able to go through something not many people will ever get to feel in their lifetime. So we should enjoy every moment of it together, and be grateful for our amazing connection we’ve always shared.

I am thankful I have such an incredible husband who looks at life and our love in the same positive manner that I do.

I know it’s hard sometimes that even YOU don’t get to know deep within what’s inside of me, until I write and process everything. I have to relive the trauma in order to help others, and that’s okay.

Sometimes I’m tired and scared and disappointed but I have you constantly here to keep the smile that never leaves my heart even when the pain takes it away from my face.

I recently wrote about not having a decent choice when it comes to treatment, what choice do we have anyways? When you’re constantly suffering through surgery, procedures, and now invasive treatments – and it doesn’t work… You just keep feeling worse, and it keeps taking it’s course, you might start to think, well do I even do the next treatment?

I was discussing the fact that with everything my body has suffered through since my diagnosis October 10, 2014, my metastatic pheochromocytoma still stubbornly proves disappointing results despite constant aggressive efforts to remove and radiate, still damages me with it’s overbearing symptoms, still hasn’t slowed down or given us even a glimpse of a stable point, but even with all of this pain and suffering…

The choice is simple

The question is not  “Should I do this treatment?”

The question is, “Should I do everything I can to stay with you?”

I’ll always choose you, I will always choose us.

The choice is simple, yes, we choose to have hope. We choose to try. We choose to do everything we can. We choose to say we did.

We choose to do everything we can to stay together, even if twenty things don’t work, I’m willing to suffer through them to see if one will.

I think that is what it means to be fabulous ‘Fabulous despite the odds’

Your loving wife,

Mrs.Simard 💋💋

Pheo VS Fabulous 💖