I said I would never do that again 😭

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 💛✨

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!

🛣🚘

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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 💗

The Choice

“Should I do this treatment?”

Read this first:

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

And then read…

Source: The Choice

Remedy for the Rare – MIBG

Well this is awkward… I think it’s been 12.. days, I don’t even know quite honestly, I’m completely disconnected from the world right now.

I kind of left all of you hanging, I apologize for my absence. I was just having MIBG radiotherapy, no big deal, my tumours haven’t been very happy with me that I turned on them again, and my body doesn’t like that I injected it with a radioactive foreign substance that seems to be making it feel all sorts of nonsense. Basically we’re in a fight, or rather a war, my body and I, and my tumours, I think they may have even joined forces and are ganging up on me it seems… because their wrath, WELL, excuse me… it’s not something I was quite prepared for, even in my best attempt: MIBG you can read here how prepared I thought I was (ha!)

You’re never quite prepared for the level of rare you experience when having a treatment administered into your body that could have so many different outcomes. It’s not as if it’s done every day, you are unique to to the medical field, and it’s you who will keep everyone on edge for the next two hours. You are no longer rare, you are literally a spectacle, a performance of medical fascination that is mixed with a nervous anticipation, and an uncertainty that can only be eased with time… and patience.

It’s a good thing I like to be centre stage 😉

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It may be intimidating for some to have 10-15 physicians watch as the radioactive solution enters into your blood stream, watching from behind a special radioactive barrier. (As shown above) in the room with me was… my radioactive solution dripping into my blood stream, my IV, my blood pressure machine timed perfectly to measure my vitals every 15 minutes, my  second IV for fluids, maybe some other gadgets… like my laptop, where I tried to watch saved by the bell and ignore the commotion of what was happening to me, but other than that I was completely isolated of course. If I didn’t have 10-15 of the best and caring physicians in the entire world watching over me through my radioactive shield, maybe I would have had a little more concern… but throughout the administration, I felt rather peaceful. I was okay with everything happening, and I love my nuclear medicine team, that kind of helps. I knew that if something were to suddenly go wrong, they’d come running, and I’d be in expert hands… so there’s that. The administration of the liquid was pretty uneventful, we all kind of thought I was going to implode or something, I was in pain and had to urinate REALLY quite badly… but other than that, it went rather well. I showed up at the hospital for 8:30 – treatment was late being administered around 3:30 and finished around 5:30pm on the 20th of January.

Part 1 – Success ! 

Easy – what were we worried about? This is nothin’. Can I go home now? Since all the fun is over, everyone is leaving, bye bye doctors! I’m fine, I feel great, that was fun, maybe we can do it again sometime soon.

Okay, perhaps I spoke too soon. It only took half an hour and I was starting to feel unwell,  I had felt worse pheochromocytoma adrenaline attacks in my day… so I said to myself, okay, if this is the worst of it… it’s not THAT bad! I can deal with chest pain, tightness, heart palpitations, and uncontrollable shaking… this isn’t TOO bad. Suck it up Miranda. It means the tumours are getting the treatment, they don’t like it, but that’s a good sign…

10:00pm – fairly certain I’m not being over dramatic when I say this is going to be farewell, everything is happening, I can’t do this, I’ve never had this many symptoms hit me at once, my body can’t sustain this type of attack… for this long… this can’t be happening, someone help me …

Isolation…

That first night of radiation … was one of the worst nights of my life.

I’ve had to endure a lot of pain, uncertainty, and physical trauma with this disease… but that night… it really had to be in the top three. I won’t give it a definitive placing because my surgeries for this disease, well, they were PRETTY brutal, so I’ll leave it as a ‘top’ placement. When you go from feeling a certain type of ‘normal’, going into treatment I didn’t feel perfect, but it was my norm, so I went from feeling ‘normal’ to all of a sudden being hit with EVERY single symptom I’ve ever felt in my life associated with this disease… all at ONE TIME. By 10 o’clock I was full blown being physically assassinated, and it was NOT pretty.

My blood pressure jumped up making me feel super unwell, my chest was tight and physically hurt, my heart hurt, it was pounding in my ears and I could feel my still fresh jugular wound pounding out of my neck from my heart rate, my neck glands were swollen and creating more pressure in my head, my headache felt as if my skull was actually growing inside of my head… my eyes felt like they were going to pop out of their sockets, all I could taste was metal, and blood, from my gums bleeding suddenly, (yes, when things start bleeding out of no where on your body, it’s incredibly alarming) then the nausea… oh dear the nausea, game over. Just kidding, who just kicked me in the back? No one, that’s just my bones, oh, all of them feel like that now, amazing. And…. now I am completely drenched in sweat, and can’t stop sweating, and won’t stop sweating, it’ll never stop. I also can’t stop peeing.

I know this seems like an insignificant detail, but when you’re in this much distress, and your bed is high, and your hooked up to EVERYTHING, and you must unhook yourself from said machines EACH time you have to go to the bathroom, and then re-hook yourself up to EACH machine properly once you make it back into your giant bed by yourself… it’s literally a process, and a debacle, and it makes you want to cry with frustration each time. Now not only do you have to do all of this when you’re not thinking straight, not walking well, you’re dizzy, and confused, and you’re fairly certain your body is going to explode at any second, every time you unplug your IV, it beeps at you constantly, and won’t stop, and your poor night nurse has to come in and expose herself to your radioactive room and self to come fix it, and this happens over ten times… and each time takes time to fix, so the beeping alone is enough to drive you out of your mind. These details, I swear… they are everything when you are completely alone, when you have nothing else to focus on – when you have nothing but a silent room, your pain and suffering, and a loud beeping assaulting you and your already unfortunate circumstances.

Night one, you know exactly where you can go.

In the meantime, would you like to see my beautiful isolation suite I had? It really was quite nice, minus the tumours imploding part and feeling the worst ever.

Over the course of the next few days in my lead isolation room behind my special radiation screen I showed you above, everything I described to you above repeated every day, just not with the same severity as it did that first night. Nothing could ever hit me as hard as it did that first night, but it was close. Every day was awful, and is still is as I am writing this. However, since I am incredibly obsessive compulsive when it comes to keeping everyone up to date and also sharing my journey for the sake of awareness, I don’t like falling behind too far. So with my little burst of insomnia energy, I am laying my soul out for the world to read once again.

I thought waking up each day I would feel a little better, but it was just an exact replica of the day before, sometimes worse than the day before, which I had not anticipated… I thought things got better as time went on, but it seemed the opposite for this treatment. I guess it takes a bit of time to settle into your cells, and once it does, the more havoc it causes in your system. Having radioactive isotopes injected directly into your body is completely different then any other ways, it becomes apart of you. YOU are completely radioactive, which is why I had to be in such an isolation setup, in fact I still am… even though I am at home I still am following strict protocol to be sleeping alone, not within a certain amount of feet of people, I still cannot kiss or touch Serge, there’s so many restrictions still, and will be for a little while. It’s crazy how potent it is.

I am grateful that my incredibly persuasive husband found a way to see me in my isolation suite, even if it was through the special protective glass. Had it not been for him… I don’t know what I would have done. He was able to come in and stay a certain amount of feet away from me after a certain amount of days, and bring me foods that I could actually not want to vomit looking at, so that was a welcome change. Just seeing him was enough to make me want to get better enough to go home, I wanted to be better, to look better, to feel better, for his sake. I am grateful that we have so many people incredibly supportive people behind us throughout the hardest times of our lives, we can’t thank each and every one of you enough times for the outpouring of love and prayer and support we receive when we need it most. I am grateful that although I am fighting this disease with all I have, and it is rare and awful and relentless… I have a medical team who doesn’t give up on me and is matches my effort and is unique to the medical world, they are superior and I am so thankful.

I do not feel it is appropriate at this stage to have any ‘expectations’ so far, as it is a complicated disease and even with positive results… it is impossible to know how long that can last, and with negative results, we can try again. So I will reserve my opinion on my expectations for now, and just wait for once. I will be going for an MIBG scan soon, to have my whole body scanned and see how the treatment did. I will reserve hope and pray that I can find some relief eventually, so that I can enjoy some precious moments… because that’s what life is all about.

I really base everything off of how I feel, right now I feel awful. I am told I will feel this way for a number of months because of my pheochromocytoma cancer and adrenal insufficiency combination, and of course my pain level that just… is part of me. There’s elements that can’t go away no matter what we do, but there’s hope that we can make me a lot more comfortable, and that’s really the main goal, that’s my expectation, is that I can just be a little more comfortable, and perhaps enjoy a little relief here and there… a vacation perhaps? 🙂 OMG, a girl can dream… this girl needs some serious R&R

We are completely exhausted. I am depleted, hurt, scared, I have zero energy, nauseous, I am still radioactive, I can hardly have the energy to shower, I still have daily adrenaline attacks, I sleep all the time.  We are having to keep an eye out for infections and horrible things that will make me have to go back into the hospital, I am overwhelmed with the amount of new symptoms on top of the old, and I am being honest when I say there is nothing fabulous to report this time around just yet.

The only Fab around here is all of the love I have received… and I am giving it back in the form of honesty, and updating you all so that you can know what’s happening to me and know you are in my heart, and what’s keeping me going.

Follow me to find out what happens next

Pheo VS Fabulous ❤

instagram: @mirandasimard

#pheovsfabulous

Soooooo tired, goodnight loves.

MIBG Therapy – it’s here

Therapy, treatment, normally implies some sort of relief right? Well let’s hope so, because I don’t think it sounds very therapeutic, but what do I know… 😂

Today is the day!

Its 6:41am and I’m about to go have a fight with the shower, be assaulted by my tumors for a good hour, and then once all at calms down… Think about leaving for the hospital for admissions, yesssss honey! It’s a glamarous life 😜

‘Mibg’ radioactive therapy should start to be administered around noon.. I have no idea what to expect… We are anticipating my body to not cooperating during the injection, it’s just a fact that the tumors are going to uptake the radioactive isotopes, and they’re going to essentially explode their adrenaline, leavin me littered with the aftermath, this is the part where they have to be extremely careful to balance with medications to protect my heart and so on! Yikes 😬

I got the greatest gift of all yesterday, because of the kindness and generosity of so many … Serge is able to stay 10 minutes away while these complications arise, being right there, VS being 3.5 hours away.. He is literally my husband and yet my caregiver, and it’s hard enough being isolated during this whole event, and several days after, knowing he is there if something goes wrong… is the best gift anyone could have given me.

gofundme.com/a7k4rbek

Yesterday was one of the most difficult days of my life, but my heart was full of warmth and happiness because of every single one of you reaching out to me… Today you will be with me in my heart 💖 Getting me through each step, until I can update again! We love you all so very much, merci and thank you for your continued support in my journey 🏩

I must be off for now, tata my loves!

See you after I’m radioactive and a little less pleasant … 😈💖

Pheo VS Fabulous

And so it begins..

It’s here, that inevitable day has come.. The one I leave my warm comfortable bed at home once again, and will travel to my ‘super hospital’ in Montreal, and receive MIBG radiotherapy…

Tomorrow the actual process starts, but of course we have to leave a day in advance in order to be there, get admitted, be ready in the morning and make sure my body doesn’t have to endure TOO much stress and travel time before the actual procedure – as it’ll be dangerous enough to administer the treatment… Eeeeek! Okay. Getting a little nervous, understandably, when I did my surgery… It was basically – that was my only option for a real chance, when I still woke up with the unfortunate news that there was disease left in me and of course that disease had multiplied within just months …. You can understand  our thoughts when it comes to this. I’m a  realist, I know there’s no cure to this disease, but it would be REALLY lovely to not have these tumors adrenaline attack me every couple hours… And feel like I’m in a war zone with my own body, and waiting to die every minute of the day. I’m not asking for a lot, just a bit of relief, a little less pain, a little less symptoms, some better quality of life.. That way I can focus on being a little more fab for a while, help some others along my way, and perhaps take a small break from this constant battle? Here’s to hoping.

We must get through the hard part first, administering the treatment which will wake up all of the tumors… Sending all of the adrenaline into my body at once, while I’m awake, (amazing) being incredibly sick, potentially wiping out my bone marrow, monitoring my adrenal insuffiency as I’m going to always be going into adrenal crisis with the stress my body will endure, being locked away in isolation as I will be radioactive until further notice, and then hopefully… With time and lots of positive energy, we will hope I will come out free of a few friends, and a little more fabulous 😉💗

you can read about the special treatment Here

what I had to do to prepare 😖 Here

Pheo VS Fabulous

#mirandastrong

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