Your Questions…

A few weeks ago I asked you guys to ask me anything, I’m so happy to share with you the answers to your questions!

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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

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 💃🏻

For those of you who are just beginning to read, I discussed my most recent results 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 😂

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 😉

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 💛👏🏼

Deal?

Pheo VS Fabulous

✌🏼️

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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 SUPERHOSPITAL🏩🙌🏼

I got poked, peed in a cup, examined, fell unconcious while waiting to be poked and prodded some more 😂… 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 😂💊💉

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 👴🏻😴😅

Just a quick update for all of you fab followers 💛🌟

Still here, alive and fighting through each new complication, one day at a time, staying fab 👌🏼💗

Pheo VS Fabulous

Normal

November, the month we all start to feel the holidays creep in, the parties start, the snow starts trickling down, Christmas is everywhere, and the thought that another year has passed finally hits you.

Normally by this time, I would be finalizing the details of my work Christmas party, I would have chosen my gown for said event, baked dozens of holiday treats, planned my vacations for when it’s too cold to stay in Canada, and I would have looked at my planner and not known where am I possibly going to find the time to do anything except be this very normal busy person during the holiday season, as we all normally are.

Normal.

Such a painful word, I look at that word as I write it and I feel a resentment, a certain envy, and a bit of sadness.

As I await what’s to come, I can’t help but to be reminded of what used to be my normal. My busy planner is still full, but not with parties, work, and holidays. It is full with hospitals, tests, results, procedures, more tests, more doctors, alarms every couple hours for medication, and bed.

Normal is being twenty five and your biggest concern is when you’re going to find time to do all of your Christmas shopping. It’s getting upset that the venue you chose for the Christmas party changed your menu at the last minute. It is choosing which dress to wear to your work gala, spending all day finding the perfect shoes to match. It is setting daily goals to be a better version of yourself, it’s having a clear vision of exactly who you want to become and how you will get there, because you have your whole life ahead of you to achieve it. 

Normal is being twenty five and my biggest concern is whether or not I’m going to find the time to have a Christmas, if I will instead be locked away being pumped full of radioactive isotopes that will hopefully shrink the spreading cancer in my body, and what kind of impact this will have on my body that doesn’t seem capable of handling anymore pain. It’s getting upset that my cancer changed it’s mind and decided to spread even more making it more difficult to treat, more so than it already was. It is still setting daily goals to become a better version of myself, and attempt to use this unfortunate situation I am given to become a stronger person, it’s having a clear vision of who I want to be and how I will get there, because I know I may not have very much time to achieve this greatness, so every day has to count. 

Pheo cancer can take away my normal, but it still won’t take away my fabulous.

It’s too much.. and that’s okay

Somewhere along this path I created, pheo VS fabulous, I must have convinced myself that I had a responsibility to maintain this “fabulous” persona at all times.

I said at the very beginning, I would never lose my fabulous, this disease would never take that away from me. Well, it hasn’t, and it never will, but I also find myself incredibly reluctant to write when I need it most… when I’m tired of being strong, when I’m literally barely holding on.

I find myself grateful for a dear friend who reminded me of the most important fact I seem to have forgotten; I am sharing with the world one of the most personal, dark, painful, vulnerable, and trying times of my life. It would be insincere of me to say that I am this painfully positive robot at all times, and a slap in the face to every person who is struggling in private, but reading my very public journey.
This is not to say I have not shared my true feelings, struggled to find the words to express my unimaginable pain, and attempted to share on an emotional level what a toll this has taken on me in the last year.. I have been one hundred percent authentic, as I promised I would be when I started.
I just know that these past few weeks have been insurmountable, I have deliberately avoided sharing anything specifically because I knew I would not have the same “uplifting” message as normal. Well, that IS the point. Positivity is part of my heart, my soul, it is me, nothing changes that. I’ve realized it takes a lot more strength to share your weakness… 

I continue to posses this attitude…thinking, “this is what will get me through, we’re going to get through this, I just have to continue on like this”, and then you read the scientific facts like how pheochromocytoma cancer only impacts 1 in 4.3million people, and how if it’s gone to the liver like mine has those people have the worst chances of survival even though they only give five years in the first place, and despite my attitude, every time I go to the doctor, I’m told something else is wrong with me, this isn’t working properly, this body part has failed, this tumor around your heart is suspicious (wait what?! I have a tumor around my heart?!?!) this may be something more, but we will do more tests and come back to it (what does that mean?!) meanwhile my pain level yo-yos and tortures me and feels like a cruel joke on-top of everything else, and my hair is falling out, and my life is falling apart, or what little I have left. 

My mind does this lately, not to mention the worry I have for regular every day people things. I worry for my friends, my family, and other people’s problems. The moment I lose my compassion for others, well… let’s just say I don’t want to ever meet that person, because surely that’s not me. It’s exhausting, I’m tired.

My mind is tired, I recently said to myself that I really wanted to go on a vacation, I wanted to go to the happiest place on earth, Disney World. I had it all planned, how I would be able to go in a wheelchair and no one would be able to say I can’t go because I had all of their objections handled in advance, and I had the best trip planned and I was so excited. I’m still wishing, and dreaming, and hoping. The more news I get, and the way everything is progressing, I don’t think it will happen in the time line I wanted it to , maybe one day… but not in December for Christmas. No one is too old for Disney World, and I’ve never been, so christmas time would have been magical, and less busy (lol) I wanted to be able to go before radiation, as a way of resetting my mind and body before it goes through another trauma, because that’s what this is, a trauma. Every experience your body has to endure, it’s traumatic, and you need to prepare mentally and physically. I’m at a point where I need something to just be on my side, as much as I can find something great in everyday, I can pick and choose every little moment and find a special something, I really would just like something to come to me and show its-self at face value and reward me for being so patient and positive.

So there it is, I’ve given a basic summary of all of the horrible things that have been floating around in my mind in the past few days. I wouldn’t be fabulous if I left it at that though…you didn’t think I would let you have this one, did you pheo? 😉

Today I said to myself, “No matter how hard it is, I don’t care how nauseous I am, how much I hurt, and how weak I feel, I am getting up, and getting ready, I am going to have a fabulous day… and do something I’ve wanted to do and also been dreading for days now!” 

Hours later, many breaks, help from Serge, encouragement from both my puppies (lol), I was ready to go for my favorite lunch, and go shop for…..wigs!!! 

I didn’t want this shopping trip to be a depressing, poor me, crying experiencing. I am happy to report that I was successful in finding many beautiful styles, I overindulged as usual, true to form I shopped as I normally would.. exhausted myself and got way too excited, and couldn’t be happier. 

I suppose all of my stories DO still have a happy ending ❤ 🙂

Pheo VS Fabulous

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Continuing to find beauty in every day… Smiling through every bit of pain!

#mirandastrong

I turned twenty five

A day to celebrate magic

A night to let go of all fear

Your birthday has come, and you’re still here 

You’re so full of love, your sparkle is bright, how can we forever encapture this night?

With every obstacle faced, we now can revel in the win of this fight

Never over, never far, but not out of reach… when your Fabulous is on guard 

I turned twenty five, and it was just as sweet as I imagined it would be. Getting older is an indescribable gift, it is recognition for all of the hard work that goes into treating me.

My birthday gifts were filled with adorable home decor items, unbelievably soft robes, the pinkest of pink pillows to help me travel to and from my appointments, sexy ‘houndstooth’ gloves to keep my little hands warm and fashionable, Ralph Lauren towels to wrap myself in after a nice hot bath, an apple TV so I can watch all my favorite shows from the comfort of my bed, you see the trend? Fabulous pink, purple, and soft comforting items.. anything that brings warm and comfort to my life.

The gift that I was most grateful for? The unusual amount of energy, stamina, and excitement I could carry through all evening.. to enjoy this beyond amazing evening my family prepared for me.

Being around more than a couple people at a time when you’re ill is extremely difficult, but my family knows how to keep things comfortable, even my seven year old nephew became the ‘miranda police’ and would deliver citations when people were speaking too loud, or too close to me, it was the most adorable thing I have ever seen.

My mother made my favorite feast, homemade chinese food, which my bestfriend and I ate twice (no judgement on your birthday) and that’s what a birthday should be. Eating too much, laughing uncontrollably, making memories with family that I will hold so dear in my heart forever.

Happy Birthday, to everyone who is living moment to moment, keep sharing your fabulous, I know I will!

My Memories – 25!

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My 'lucky elephant' from my 7 year old nephew, he is a heart breaker

My ‘lucky elephant’ from my 7 year old nephew, he is a heart breaker

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Half of the fam who braved the cold

Half of the fam who braved the cold

I can't take a picture with my sister without making her laugh uncontrollably, and I wouldn't have it any other way

I can’t take a picture with my sister without making her laugh uncontrollably, and I wouldn’t have it any other way

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FEAST! Mother's homemade chinese food <3

FEAST! Mother’s homemade chinese food ❤

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Squad goals

Squad goals

My amazing mother, who will do anything for her daughter to get me through this time, she is mama soldier

My amazing mother, who will do anything for her daughter to get me through this time, she is mama soldier

My bestfriend, and my dad, we always need one picture that isn't 'pretty'

My bestfriend, and my dad, we always need one picture that isn’t ‘pretty’

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The cake that exceeded perfection... <3

The cake that exceeded perfection… ❤

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My bestfriend

My best friend in the whole world

My strength

My strength, my love, my fabulous! ❤

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Remember, there is something good in EVERY day. You just need to open your heart and find what that good is, and share it with the world!

“Fabulous is your light, your smile, your energy, your posivitity, your willfulmess, your vitality, passion, excitement, stubbornness, beauty, laugh, and how you share it!” – Pheo VS Fabulous 

Dear body…

Dear body, I know you’re stubborn like me, dramatic, and complex… but you’re getting to be a bit more than I can even handle, and I would appreciate it if we could call a truce and work together for a while.

Do you ever wonder how much your body can physically and emotionally sustain? I have been asking myself this question this week, and I don’t normally think this way, because let’s be honest… My body has seen it’s fair share of battle. Which is why I so naively thought to myself, “it can’t get much worse than this” And then I was so incredibly wrong, that’s when I received another diagnosis, adrenal insuffiency.

HOW CAN I GET ANY MORE COMPLICATED!!? 😫

It has been one hell of a week my friends, let me just tell you… Although I am still so positive and in much better spirits than two-three days ago, being told a vital organ died in your body, while already battling and endless fight of rare cancer, and not knowing how to handle life already, is … For lack of a better word, devastating.

We all have two adrenals, (I have only one now, I had to have the other removed during my first surgery to remove the pheochromocytoma tumor, which also produces the same adrenaline hormones as the gland) these two little glands sit on top of your kidneys, and kind of play a huge role in your body, let me break it down:

The adrenal cortex—produces hormones that are vital to life, such as cortisol (which helps regulate metabolism and helps your body respond to stress) and aldosterone (which helps control blood pressure).
The adrenal medulla—the inner part of the gland—produces nonessential (that is, you don’t need them to live) hormones, such as adrenaline (which helps your body react to stress).

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The pheochromocytoma tumors ALSO produce these hormones, such as adrenaline, which is why it was so important to debulk as many metastisized tumors back in May, and continue to treat with high doses of blood pressure and heart rate meds to lessen the effect it has on my body.

However! When my adrenal slowly started dying, we had big problems. Now my body was being fed with episodes of too much adrenaline, and then slowly no cortisol… Which as you read above, is essential to life. Also, as you can kind of understand… Conflicting with one another. I feel as though one person can only be so close to death so many times, it’s becoming cruel, and quite frankly terrifying. Not to mention, when you’re unaware… Your body starts slowly shutting down, and you literally feel as though you’re dying. So this week was very special, a very particularly hard and fast rollercoaster that we are only now slowing down from, once again.

What now?

Well, once my endocrinologist (who I am now referring to as my super doctor) from the super hospital figured this all out, he had to immediately put me on a synthetic version of what our bodies produce naturally, cortisol. Since I can no longer do so, I will now have to be on this steroid drug for the remainder of my life to control what others will have done for them naturally. As I have an endocrine cancer, I knew this would be a possibility one day, but I had hope that this wouldn’t happen, and I honestly had no idea the complexities of it alll until it happened to me. It is truly one hard pill to swallow!

With replacing cortisol in pill form, it gets tricky… You no longer have the ability to produce cortisol when you’re stressed, excited, any of the natural functions your body goes through, when these things happen normally you will get more cortisol production to counter act the effects, now that I don’t produce any, I have to decide when I need to take more cortisol medication in order to control my blood pressure from now DROPPING.

So, the pheo makes my BP rocket, and the adrenal failure makes it plummet, and taking too much cortisol can make stimulate my tumors too much, and not taking enough can leave my body in dangerous need of it. It’s a delicate balancing act … And a lot of responsibility. A learning curve for sure, one day at a time. I think this one was just so much harder because of the physical hardship it has added, my body has been under so much duress, and the yoyo effect and all of these continuous new drugs, side effects mounting.

Life is hard, but it is our challenges that make us continue to realize our strength.

Pheo VS Fabulous

💗

#netcancer #awareness #pheochromocytoma #AI #lifeisbeautiful

The lookout

I haven’t been feeling so well lately, the more time passes the more this disease gets all consuming and just more complicated. These past few days I haven’t quite been my normal cheery self. My perfect husband noticed especially tonight I was a bit overwhelmed with everything happening lately, so he says “let’s go for a drive, somewhere other than a hospital”. We’ve always been meaning to go to this lookout, which is best seen in the daytime, but we never seem to have the time.
So we hop in the truck, every road we try to take seems to be closed, detours at every turn, it seems impossible to get there, which is kind of funny at this point since I’m literally feeling like it is our life.
We get detoured through a little village, and a small store happens to be open. Now if you know me, you know fall is my favorite season, and this store just happens to have pumpkins EVERYWHERE! I was suddenly so happy, I didn’t even care if we made it to the lookout. I bought three perfect pumpkins, and a big bright yellow fall flower bush. My happiness and determination restored, we got back in Linc and decided to find a way!
We ended up making our way to the lookout, it was every bit as beautiful as promised, even at night. At that moment, all I could think about was being in the situation we are in is so hard, and cancer isn’t fun or happy, but it does make you incredibly thankful for even the smallest things, and puts you in touch with yourself and others in a way that is raw and unmasked.  Serge and I started our relationship while I was in the hospital the first time for my pheochromocytoma, and we connected in a very unconventional way. We went through more in those few months than some people will in a lifetime, and we continue to thrive in the most adverse times… Over and over again. I’m so proud of us, and I sincerely know we were brought together to make our strength stronger, and with that we are those weirdos that smile, laugh, and thank each other everyday for what we have, despite it all. Tonight was just a reminder of all I have to be thankful for, that my life and impact I will make is just the beginning.

Take a real moment, alone, with someone you love, and just reflect, reflect on everything you have, want to do, how you can be impactful, how you can be special, how you can add more happiness and positivity into your life, and just be thankful for every single thing you have, your health, your future, your relationships, even if it’s a pumpkin! 🎃💛☺️

Pheo vs Fabulous