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 withΒ 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. πŸ’‹πŸ’‹πŸ’‹πŸ’‹πŸ’‹πŸ’‹πŸ’—πŸ’‹πŸ’‹πŸ’‹πŸ’‹πŸ’—

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 choiceΒ 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 Β “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 πŸ’‹πŸ’‹

Pheo VS Fabulous πŸ’–

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 didΒ MIBG radioactive therapyΒ (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 βœŒπŸΌοΈπŸ’œ

Smile & Stay Fab

pheo VS fabulous πŸ’–

#mirandastrong

#pheovsfabulous

Instagram: @mirandasimard

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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… πŸ˜‚

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 πŸ’– 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 … πŸ˜ˆπŸ’–

Pheo VS Fabulous

Day 1 – bone marrow collection

I have a whole big schedule planned and everything, it’s very formal 🏩😁

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 πŸ’—

Pain pain go away…

Bone marrow injections πŸ’‰

Yesterday we started the special injections needed to stimulate the growth of new stem cells in my bone marrow, so that when we actually start the transplant/collection process on Monday it will be easier to collect.

Asides from the obvious pain of Β being injecting by a needle, the burning sensation of a foreign liquid going into your body, and the look on your husband’s face while having to do this to you… It’s the pain it causes AFTER I wasn’t quite prepared for. I suppose I should have, given the fact that all of these new stem cells need room to take shape in your bones, but I wasn’t quite expecting a literal feeling of my bones being ripped apart. Well there you have it, I’ve learned something new.

Be prepared for your bones to feel as though they’re being ripped apart, your knees to feel as though they’re being hit with hockey sticks, your chest to feel like it’s being split in two, your rib cage to feel like it’s being pulled on either side, and your lower spine has become someone’s instrument in a very aggressive band. Yes, this is what my body has become, a painful symphony of well, PAIN. My pain level is already incredibly high, and this new development of bone pain and side effects has put my body into almost a shock like state, a trauma if you will. I didn’t mention the skull bashing headache, the intensity of nausea, and many other lovely symptoms, I think the bone pain is the main event worth noting.

We arrived home yesterday after having gone through the day of testing and first injections and appointments, I was exhausted. I slept immediately as I got home, and everytime I would wake up, I couldn’t stand the thought of being conscious for this magnitude of pain… So I would drift off into another sleep, this continued the entire night, or until I lost track of time.

Today was a new day, a new injection, no change as far as pain or fatigue. If anything .. it may have been worse if that’s even possible. They say to rate your pain on a scale from 1-10, I’m no longer sure if I can do that. My pain level has been at a ’10’ so often, it no longer seems adequate. I couldn’t keep my eyes open for long enough to care, and since I normally am plagued with the inability to sleep at night as part of my disease – I welcomed the change. What I didn’t realize is that this exhaustion was more than exhaustion, it was my cortisol once again depleting from the amount of pain I was in, and this inability to stay awake was a sign I was much too low, and needing steroids. All I cared about was not feeling pain.. So I ignored the fact that I should be watching out for this, I just wanted to not feel anything. It was when Serge finally woke me up and demanded I take steroids, I knew he meant business. What I didn’t realize is that I had been unresponsive for quite some time. Oh, what fun he must have had, wondering if I’m just tired or unconscious. I feel bad for him quite often, I must get him a present – like a whole year worth of steak.. Or perhaps the greatest gift of all would be to just see me without pain for a little while, yes I think that would do πŸ’—

Tomorrow will be day 3 of the injections, and hopefully the last day needed. We may need more depending on collections, but so far as planned, it’s the last day for injection times… I’m not quite sure how long these side effects will go on for, a few days, everyone is different.

Tomorrow (Sunday) we will do our last injections here at home, and then leave for our hotel. Monday early morning we are scheduled to do blood, and then….. THE MOST DREADFUL PART – I have to have a line inserted into my neck 😫 My veins aren’t very good, so I will have to go to radiology, and have a procedure done where they will literally put in a big fat tube into my artery in my neck – while I’m awake. I’ve only ever had this done while out, during prep for surgery, and taken out awake… And let me just tell you, having it taken out, was one of my worst memories. LIKE THIS IS JUST MY WORST FEAR … So Monday is basically my nemesis. 😰 They will keep this in for the few days of collections, and then take it out once they’ve gotten enough stem cells. (UGH) So after I have that installed, I will go and get comfortable in the lovely machine, where I will spend approximately 6 hours a day .. and see at the end of the day if they’ve gotten enough etc! Can I just say.. It’s a good thing I absolutely love my hospital?! I spend half my life there and they treat us like.. family. Everything about this is awful, but atleast I have the comfort in knowing I’m in good hands πŸ’—

Thats my update for now, pain πŸ˜‚πŸ˜

The good news is… Our hotel is fab, I couldn’t possibly recuperate without a fabulous place to lay my poor body!

(I knew I would sneak fab into there somewhere)

πŸ’—πŸ’—πŸ’—

Pheo VS Fabulous

Gross!

GROSSΒ 

That’s the only word I have for you today, gross. LOL

OKAY, okay… It’s day 1 of the bone marrow transplant (injections first) – as a reminder to those of you just starting to read, I am transplanting my own marrow in order to be prepared for a high dose MibgΒ Β radioactive therapy incase it kills my bone marrow.. I’ll have some for later, you know for a rainy bone marrow-less day.

So we got up at 4:30am, I consider this a good start because my pheo tumors aren’t as angry with me today, my cortisol doesn’t seem as hungry, and I’m all fab for my bone marrow injection. What more could I possibly ask for?! ☺️

Well, my husband sang the miss America song as I walked down the stairs… I guess there really is more I could ask for πŸ’πŸ»πŸ’

I will be getting the very first injection today – to help ‘stimulate’ my stem cells. Β πŸ˜† Then once Serge has seen how to do it, he will be responsible for the ridiculously expensive injections for the next two days, and we all know how much he loves giving me injections… and then Monday morning … The collection process starts. That’s the super fun part where I get to actually sit in the machine for 6-7 hours each day and have my blood and stem cells separated, with a big tube in my neck. It’s going to be A-MAZING!

For now we will start with these super painful injections – bring on the bone pain!

It’s way too early for this much sarcasm, I promise it’s all good natured, I’m smiling as I’m writing this. I have nothing better to do on my 3 hour drive πŸ˜ˆπŸ’‰

Enjoy your day, be good to your bones, eat your vegetables, and do something kind πŸ’—βœŒπŸΌοΈ

Pheo VS Fabulous

Hospital Chic πŸ’–

Is there such a thing?! I’m starting my new year with … you guessed it, a little hospital get away! πŸ˜‰ I’ve decided my attire for my day of tests is going to be ‘hospital chic’, what do you think?!

Whoever said you can’t be fabulous on 2 hours of sleep, a 5:30am awakening, full of steroids and Benadryl, a 3.5 hour car drive, no eating and drinking, inevitable pain, and a day ahead full of tests… CLEARLY has not met me.

Can we just talk about the cruel fact that I am severely allergic to contrast iodine needed to do imaging …? Like having a rare cancer you need to do imaging with contrast all the time, and I’m allergic. COME ON! So steroid and Benadryl blast it is πŸ’ŠπŸ’ŠπŸ’Š

These next couple days will hopefully help us figure out my mystery worsening pain, and then I can enter into my bone marrow transplant, and MIBG radiotherapy.. Comfortably knowing there isn’t ANOTHER oddity to add onto the list 😜

Cross your fingers, pray, wish on a star, just think of me and let them be good thoughts please and thank you 😘

IT’S A PLAN!

Goodness, long day ahead…! Updates will come, of course πŸ’—

Yours truly,

Pheo VS Fabulous

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And so it begins…

Well that was a nice little break, we had a couple of weeks it seems where we weren’t going to the hospital QUITE as often… and it was lovely! I only had a few bad episodes, less hospital visits, minor testing, and I would say that in the world of metastatic pheochromocytoma, this would be a success πŸ’ƒπŸ»

For those of you who are just beginning to read, I discussed my most recent resultsΒ here. I mentioned that with the special radiation that is designed to treat this type of cancer/tumor, they’ve recommended as a precaution that I donate bone marrow in advance to be extra careful … So that’s what I’ll be discussing today! I’m quite happy to be meeting with the hematologist, if there’s one thing you’ve learned about me so far, it’s that I’m very impatient, and I deal well with facts, I’m not good with the unknown phases. As horrible as some information may be to receive, it’s even more awful thinking about it in a hypothetical sense, I’m a lay it on me type person! So, now that I’ve gone over every horrid possibility of what they may do to this fabulous but broken body of mine, I’m ready to receive the actual facts πŸ˜‚

This will be step one of many to prepare for this high dose MIBG radiation therapy in January, oh so soon…!

My little tumor grenades have been quite aggressive lately, putting out a lot of adrenaline, making it quite difficult to live – it will be quite nice to blast them with some radioactive iodine, put them in their place and all that sort of thing.

I never said I would fight fair πŸ˜‰

So step 1: see hematology, see my favorite pheo cancer doctor is step 2 today, and then… Do the long drive back, and update all of you with the gory details later πŸ’›πŸ‘πŸΌ

Deal?

Pheo VS Fabulous

✌🏼️

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Perfect days…

It seemed as though I was having a rough time for a little while, getting all of my recent results, putting a date to my radiation, having issues with my adrenal insufficiency, and meanwhile I was just praying for some special moments of time before radiation.. I wanted to do some Christmas baking, see my best friendsΒ for a day, decorate my Christmas tree with my husband, wrap gifts, and of course eventually spend Christmas with my family.

These tasks were honestly beginning to seem impossible, especially since all of my energy was being spent in the hospital, and what little was left was recuperating at home. Until one magical day when my new medication started working, and my prayers and hopes and fairy dust seemed to have been answered. My being tired of tomorrow finally turned into “I can do it today!!!”

So not only did I bake cookies, I BAKED COOKIES. I had my mother over, and God bless her, she did most of the work, because let’s be honest… I can’t possibly be mixing hard dough with the condition of my poor massacred abdomen, but still, we made so many cookies and treats!!! It was the most amazing day. I may have slept until 4:30 in the afternoon the following day, and felt like I was run over by a vehicle, but I didn’t care, it was so worth it! πŸ˜πŸŽ„πŸŽ…πŸ»

Second on my list of must dos, was seeing my best friends before Christmas. What do best friends do? Eat, laugh, talk about old times, laugh more, eat more, take photos and laugh while taking photos. It was fabulous, as you can imagine. So I had my husband, my two best friends, the fresh air of one of my favorite parks, and my absolute favorite restaurant to follow, like….. Heaven!

These things may have taken months to do, literally, we’ve been trying to set this day up for months, but as I always say – quality over quantity. We had the perfect day, and that’s what counts. I may not get to have a great day every week, but when I do have one, it’s perfect. That’s what best friends do, they patiently wait until you’re ready, and when you are they are at your side – making every second with you count.

I still have some things to achieve on my perfect day list, but understandably I’m exhausted πŸ˜‚ – so I’ll highlight you on the two big activities I’ve done so far, in photos, because photos are just so beautiful… I feel like you can see every bit of happiness I experienced those days with me, and since I make you go through every emotion with me here, I will give you a break this time and let you have a moment of pure joy πŸ˜„

Christmas Baking Day:

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Β And… Our perfect day in the park:

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You find your people, you find your person, and you lean on them. (Literally)

Pheo VS Fabulous ❀️

Wrap me in my robe..

So after going into a cortisol crash unconcious state seven times and counting, it was about time we made our way to our favorite SUPERHOSPITALπŸ©πŸ™ŒπŸΌ

I got poked, peed in a cup, examined, fell unconcious while waiting to be poked and prodded some more πŸ˜‚… And I’m now taking lots and lots of steroids to make up for the amount of cortisol my body is eating for no reason. It’s hungry okay.. Don’t judge me.

Even though your body naturally produces these hormones to live, when you take them in synthetic form it’s entirely different. There’s a whole load of side effects, weight gain and moon face are my two favorites. I also like when I can’t sleep even more so at night. I can’t keep my eyes open during the day but I’m wired a night, when you have to get up at 4am to do a 3hr car ride to do multiple tests and figure out a plan of action for your strange medical issue, it’s very unpleasant not having slept all night. I was still a real treat to be around, I was just a little more sassy.

I have to take a new medication which is hopefully the answer to the mystery, it’s responsible for ANOTHER hormone that’s apparently leaving my body without my permission, that I’m not naturally producing, that I’ll replace in another pill form. Apparently I’m peeing out all my sodium, which is making my blood pressure drop, and makes me go bye bye. So that makes sense. We shall see, I love adding new medications to the 50 I take already πŸ˜‚πŸ’ŠπŸ’‰

oh my goodness I really am a little too spicy today to be writing. Tone it down Miranda!

I am bundled up in my robe of angels and cloud particles, and about to go into a deep undisturbed sleep where I will dream about all of the purchases I deliriously ordered while I was not in my right mind during cyber Monday last night in the fog of the cortisol crisis. Let’s blame it on that shall we?

Let’s also pray this new medication and extreme up dosing of steroids will prevent me from slipping into lala land anymore, I don’t think Serge can handle me drifting off there anymore. I can see a new wrinkle forming each time I decide to pass out πŸ‘΄πŸ»πŸ˜΄πŸ˜…

Just a quick update for all of you fab followers πŸ’›πŸŒŸ

Still here, alive and fighting through each new complication, one day at a time, staying fab πŸ‘ŒπŸΌπŸ’—

Pheo VS Fabulous