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!

🛣🚘

IMG_5823

And we leave for round 3 – PRRT

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

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

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

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

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

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

💊💉🏥😷😭

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

🙏🏼👊🏼

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

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

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

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

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

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

I love you baby!!!

PHEO VS FABULOUS

 

Facetune

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

 

 

Dear husband…

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 💖

It can only get better…

WELL I CERTAINLY HOPE SO.

I keep being told it will be worse before there’s a chance of it getting better… I’ve had quite a bit of proof of the first portion of this statement, now I will have to practice my patience and good faith for the second.

MIBG, NOT my favorite treatment.

So far we have not gotten along so well you could say… I’ve been meaning to update everyone since my last appointment and share what I know so far. Except I really haven’t been well, and I had a pretty big dose of reality lately.

As much as I like to share when things are on a positive note … Well, the reality is, living with this disease is often dark and all consuming – although I AM bright and try to find the good in everything despite this constant torment, there are times when I must be candid and speak through my pain and suffering. I’ve actually been telling myself, “I’ll wait until I feel better to update, I’ll wait until I have something good to share” until I realized… That isn’t how MY life works, I wish I had the luxury of blocking out all of the bad and fast forward until I had something good to hear, or skip over all of the parts where I suffer and wait until I feel better…

I also know that nobody else expects that of me, so here I am, sharing the in between with you, I may even throw in an f bomb if you’re lucky. That’s how angry my pheos are, yes I’m blaming any profanity on the tumors, they’re really being assholes. MIBG has got them all kinds of angry… Let me just tell you. Ok, where do I start?

So it’s been 22 days since I had MIBG radioactive iodine injected into my blood stream, 22 days of radioactive pheo cancer hell, 22 days of worsening symptoms, and every day is a new adventure. Rather than get better, I get worse. See how fun that is? I thought the idea was that you get better as the days went on, most people do, NOPE. My symptoms get stronger, more aggressive each day, it’s super awesome. I like the spontaneity and danger of it all I guess, who wants to wake up and be normal for a day? How boring. (I would also like to be excused from any and all sarcasm, I’m going to blame the excess of Catecholamines (adrenaline) being made by my angry tumors, thereby making me very sarcastic… I think too much epinephrine and norepinephrine makes people very sarcastic) Science. YES! Science.

We went to my last appointment with some expectations and no expectations: I’ll explain.

Some expectations meaning… We thought we were going in to do a day of tests, and meet with my pheo Doctor, and have an idea of how the treatment was working so far. Since I was doing another MIBG scan, 2 week blood work, we were under the impression that we would be seeing how the treatment was taking.

What I meant about having no expectations? Well, I didn’t want to get my hopes up, so when nuclear medicine told me I would be having a MIBG scan 2 weeks after my treatment to see how I was doing, I didn’t want to get too excited about results, so I remained neutral, and said to myself “I’m going to go in with no expectations, that way I can’t be disappointed”

It was the first time I had left the house since treatment, it was an incredibly hard day. We drove out normal 3 hours to the hospital. The scan was long, painful, with the way I feel it’s so hard to do just about anything…Being scanned for 2 hours is not ideal, Laying with my arms above my head for 52 of those minutes isn’t at the top of my list. Then I gave blood, and then I waited to see my doctor to discuss the results of my blood, and maybe the scan.

We then saw my doctor, and at this point we realized there was a misunderstanding, the scan wasn’t being done to see how the treatment was working. It was actually being done to take advantage of how much MIBG radiation was in my body, and the MIBG scan was being done at this time to find any MORE cancer that’s potentially in my body that otherwise would not be picked up normally in regular circumstances with trace amounts of MIBG. NOT what I was expecting…. Good thing I had no expectations LOL. We went from thinking we would hear how the treatment was working, to hearing they were looking for MORE cancer.. So, not in any rush for those results. Moving on!

So once we got that misunderstanding out of the way, we then of course asked when it would be that we would find out if the treatment was working or not, since it was clearly not now. It turns out it won’t be for a while, it’s a long process, a few months. We will revisit this in a couple months, maybe at that point we will start having an idea if the treatment is lessening the output of adrenaline the tumors are having.

The main priority over the next few months is just constant monitoring of all of the other complications that could potentially happen from the treatment itself, and making sure my bone marrow doesn’t deplete, I don’t get any infections, my tumors don’t kill me from all the adrenaline they are producing, and we control all of the worsening symptoms and side effects being caused. Easy peasy.

It’s a long process, I will be feeling like this for a long while. I knew that, but it’s hard to know what to expect until you’re in the situation. Surgeries are the most difficult things I’ve had to endure, but I’ve known what to expect once they’re done, this is so different, because not only is every day a surprise … I also can’t know if it’s even worth doing in the end.

It seems like every couple days we are increasing all of my medications to try and control my vitals, to keep me out of the hospital, and despite these efforts… They’re still out of control. I literally have left the house once since I have been back, the stairs are a danger zone, getting up too quickly is a danger, going to the bathroom is a danger, showering is a HUGE danger, breathing too hard is a danger.
It’s not as if I am doing anything at all to provoke these episodes, I cannot cut down my activity level any further… Existing is and breathing is all that is left lol. When you are told to stop showering, because it is a danger to your health, it is quite frustrating.

I can be sitting in bed doing nothing at all, and when these new “MIBG spikes” is what I’m calling them – happen, it feels like my heart is being dredged in cement suddenly, and it takes everything it has to beat… It hurts so much, each beat is accompanied by a very unique pain, and my head is filled with pressure, so much that my eyes feel like they’re going to pop out of my face, my chest is filled with pain, and it feels like I am having a heart attack. This lasts for a few minutes, and then I’m so very fatigued… And nauseous, I feel I could sleep forever. Except then I am plagued with insomnia later at night. I’ve had plenty of pheo attacks, I still do, except this is above and beyond those, it’s the effect of my blood pressure sky rocketing while my tumors release a dangerous amount of catecholamines from the MIBG treatment. The problem is that … my medication continues to be increased, which should lower this, except this continues to actually go higher and higher, NOT supposed to happen. So I will continue to do nothing, relax, and just endure this vicious assault MIBG has on my body, because what choice do I have? It’s scary knowing that every time this happens, thinking about the damage it has on my body, I try not to think about those parts, I try to remain naive to that, you can only do that for so long though.

I will continue to be closely monitored, AND I decided while writing this…. The good I am taking out of this so far, is … My bone marrow is good so far!!! (YAY) for strong marrow results, that’s good right? SEE, I knew I’d find a positive in there, f*ck you pheo. I also found an f bomb, HA. I will continue to go every 2 weeks to do blood, make sure I’m alive, check my cell counts, make sure my thyroid is functioning… And all of these other great and scary things. SO MANY COMPLICATED FUN PUZZLES! So….. Let’s hope I can stay out of the hospital between then, yes?! Today was A SUPER CLOSE CALL, crisis level was high in the Simard house, Doctor Serge to the rescue as usual, formally known from now on as doctor cupcakes (lol) – when in doubt… Just prescribe cupcakes. Words to live by

Hm what else…. Oh! The taste of eating batteries has calmed down a bit also, that has been a welcome change! It’s not quite as strong. Yes yes more good news! See, as I continue, I find more good. So yes even though the adrenaline, heart, blood pressure, vital elevation attack side of things are worsening …. The taste of batteries has decreased and my blood work was okay so far, SOOOOO there’s a bit of a bright side. Now we just have to make it through the next 6 months or so of this, and we are smooth sailing.

The last time I put on makeup was Christmas, a random thought I know, but it is strange not physically being able to do anything.. Especially things that were once just an everyday routine for me, now they are a “luxury” Now since I am barely allowed to shower – or closely monitored when doing so because it is my most dangerous activity, (you should see the calories my Fitbit claims I burn just by breathing) 😂 I’m gonna get really crazy and say… I really would love to be able to be normal and plan a vacation, or EVEN just go out for dinner one night, or actually just do anything at all.. At this point I’d like to just be able to walk up or down the stairs without my body imploding. I would like to be able to go a day without my body attacking itself while doing nothing. So I will say this, I’d like to be able to soon be well enough to just .. Have a day where I can feel good enough to just leave the house, change my surroundings, and feel like my normal fabulous self for even just a few hours. This is me being realistic with my expectations, I will find a way to be FAB… I always do 😉💋

Day 22, I pray this disease will become a little more manageable – because nobody should have to fight this hard.

I promise to update as my body allows, but for now…. It is tired xox

Pheo VS Fabulous

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 😉

image12

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.