I said I would never do that again ๐Ÿ˜ญ

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) ย Iย wrote about in previous times to GREAT lengths because it caused you such trauma the last therapy during MIBGย (and out of all the things you’ve had done.. that’s saying a lot), just the mention of it is traumatic.ย 

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.ย 

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

this is why.ย 

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.ย 



Facetune

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

jugular insertionย 



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 ๐Ÿ’‹, 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. ๐Ÿ–๐Ÿผ๐Ÿฅ

more fun trial stuff soon, byeeeeee

#pheovsfabulous

MRI round two

So we did the brain a couple days ago, time for the abdomen! I had a two day break, (woooo) ๐Ÿ˜‰

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?! โœจ๐Ÿ’„๐Ÿšโ˜„

image

My brain MRI was very….. interesting ๐Ÿ˜ 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 ๐Ÿ‘Ž๐Ÿป๐Ÿ˜‘ 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, rightโ‰๏ธ)

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 ๐Ÿ˜ซ, SOOOO yeah๐Ÿ–๐Ÿป๐Ÿ–๐Ÿป๐Ÿ–๐Ÿป๐Ÿ†˜๐Ÿšซ

Hopefully my body won’t do anything funny today, like pass out a bunch of times from (cortisol low) ๐Ÿ’Š๐Ÿ’Š๐Ÿ’Š ย 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 ๐Ÿ˜ก , that’s ENOUGH k?! ๐Ÿ‘‡๐Ÿผ 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 โœŒ๐Ÿผ๏ธโœจ๐Ÿ’—

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! ๐Ÿ’‹

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

Pheo VS Fabulous ๐Ÿ’—

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?! ๐Ÿ“ธ

That’s right, it’s MRI time!

Today will be my brain, because who doesn’t want to see inside this fabulous mind? ๐Ÿ˜‰ 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 thereโ”

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, yesโ‰๏ธ

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 ๐Ÿ‘€

Be on the lookout for part 2 of my MIBGย 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 ๐Ÿค“

Alright, off to the scanner I go! โœŒ๐Ÿผ๏ธโœจ๐Ÿ’‹

Pheo VS Fabulous

image

The Choice

โ€œ

“Should I do this treatment?โ€

Read this first:

https://pheovsfabulous.wordpress.com/radioactive-therapy-mibg-overview/

And then read…

Source: The Choice

After

A few days ago I made a promise that I would compile all of the last few months worth of information regarding MIBG Therapy – and put it into one informative place.

I said I would reveal more details about the aftermath, as I had about the before, and spared no details during the procedure. It took me a little while, as it’s been quite hard to get to this point as some of you know… and only now have we just started to receive some information regarding the results. You can read all about it in the overview & more.

I am hopeful this will provide you with an understanding of what goes into to this type of treatment, before, during and after. To get a better look at how hard everyone works, in an effort to keep me alive.

With so little information about metastatic pheochromocytoma available, and even less about the treatment options, etc… I will continue to help fill that space for those of us who need it most, the patients.

I hope you will have questions answered that only someone like me who has experienced it could answer for you. I am hopeful for those of you preparing for this treatment, I wish you the very best in your own personal journeys…

Permanently available in the ‘Menu’ – Radioactive Therapy – MIBG (Overview)

Now Available

๐Ÿ™‚


Remember… it can’t take away your ‘fabulous’ย 

Pheo VS Fabulous โค

It’s been a while ..

It’s been a little while hasn’t it? A couple of weeks atleast, I thought I should drop in and reassure everyone of my existence.

It’s my 2 month radiotheranniversary … Woo .. Ha ๐Ÿ˜‚ I’m still here

Okay so last time I spoke to you, everything was quite awful. My tumors were acting quite vicious, my symptoms were at an all time high, the MIBG radiation was making everything very problematic. Well, although I’m still in the same boat, it’s not quite as severe basically. I haven’t been updating quite as often because it’s still quite difficult for me as I don’t feel very well, and everything is very exhausting. However …decreased severity of symptoms is really great news so, that’s something guys.

Right now I’m on my way to my favorite super hospital in Montreal to get some important testing done, and despite the pain, nausea, and adrenaline the enemy likes to cause… I found my inner fab ๐Ÿ˜˜โค๏ธ

image.jpeg

There’s always a reason to smile

With so many awful things to worry about, feel, and experience… Cancer gives you two options: succumb to it’s misery and pain, and let yourself be one with it physically and mentally, or… Allow yourself to feel the inevitable pain and misery, be honest about the trials it imposes upon your life, and still find a reason to smile every single day… because let’s put this differently, with so many awful things to worry about, why NOT smile?

If you are still able to see the beauty amongst all that pain, that is a smile worth having.

It’s been 16 days since I didย MIBG radioactive therapyย (read link here) – It is definitely still an imposition, and I certainly can go on and on about my struggles, but instead I’m just going to focus on today – with no expectations, and just keep smiling my way through it for now.

Today I will get a look at how my body is performing after my high dose of MIBG radioactive therapy, and make sure I’m not in any imminent danger, we like knowing I’m safe and sound and my tumors aren’t going to do anything sneaky. You never know… Since the surprise attack we initiated on them, they can be very vindictive.

So happy world cancer day my friends โœŒ๐Ÿผ๏ธ๐Ÿ’œ

Smile & Stay Fab

pheo VS fabulous ๐Ÿ’–

#mirandastrong

#pheovsfabulous

Instagram: @mirandasimard

image