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 withย 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. ๐Ÿ’‹๐Ÿ’‹๐Ÿ’‹๐Ÿ’‹๐Ÿ’‹๐Ÿ’‹๐Ÿ’—๐Ÿ’‹๐Ÿ’‹๐Ÿ’‹๐Ÿ’‹๐Ÿ’—

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 choiceย 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 ย “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 ๐Ÿ’‹๐Ÿ’‹

Pheo VS Fabulous ๐Ÿ’–

I’m still slowly picking up the pieces…

I had to ask myself a tough question recently.

“Am I ready to accept that my health will keep declining?”

Let me explain, regardless of whether or not it will, it’s what we do with this information and how we are prepared to deal with it that’s important. Going through MIBGย radiotherapy has really taken a lot from me, I am still slowly picking up the pieces… but that’s the beauty of it, I am still picking them up.

Although I have been a little more quiet during my recovery, it’s been a lot more difficult for me this time around… I felt it was important to share that I have not lost my hope, my passion, my positivity, and most importantly… my ‘fabulous’.

I am so honoured to be able to say I can share this message through The Mighty, as they have so kindly published my article.

Thank you to The Mighty for helping me achieve my goal in becoming a little less rare.

You can read it here:

http://themighty.com/2016/03/how-to-accept-declining-health-when-chronically-ill/

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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

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I am rare – Rare Disease Day

Although I would like to think that I use every day as an opportunity to make this disease a little more exposed, february 29th 2016 is rare disease day.

A day to remind the world that although rare… diseases like mine do in fact exist, and because they are rare, they don’t get any attention, and as a result – we suffer.

We suffer through misdiagnosis, delayed diagnosis, and lack of information when dealing with our rare conditions. We suffer through painful surgeries, lack of treatment options, and invasive trials, with no cure in the end. We suffer in silence.

February 29th is our day to make our voices heard, help me get a little bit louder.

I have pheochromocytoma cancer, adrenal insufficiency, I’m 25 years old, and I am rare.

Rare disease day, 2016

#mirandastrong #pheochromocytoma #netcancer #ai #zebra #rarediseaseday #pheovsfabulous

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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:ย MIBGย 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 ๐Ÿ˜‰

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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 ย 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 !ย 

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, ย 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? ๐Ÿ™‚ 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. ย 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 โค

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… ๐Ÿ˜‚

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 ๐Ÿ˜œ

‘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 ๐Ÿ˜ฌ

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.

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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 ๐Ÿ’– 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 ๐Ÿฉ

I must be off for now, tata my loves!

See you after I’m radioactive and a little less pleasant … ๐Ÿ˜ˆ๐Ÿ’–

Pheo VS Fabulous

Day 1 – bone marrow collection

I have a whole big schedule planned and everything, it’s very formal ๐Ÿฉ๐Ÿ˜

First I’m going to get some bloods…

Second im going to get a big garden hose inserted into my tiny neck… AHHHHHHHHHHHHHH

Then I will go get my garden hose attached to the machine where I will be hooked up for 6 hours atleast that will steal all my of my bone marrow stem cells, while I watch I love Lucy and sleep and talk to all of you.

At the end of the day I will see how I did and then repeat all over again, except I go back to the hotel with the garden hose still in my neck (ew ew ew) lol. It’s a big IV BY THE WAY…

My goodness, ok I’ll update more later – I just had to let everyone know it’s STARTING ….!!!!!

XOX

Pheo VS Fabulous ๐Ÿ’—