Stop waking me up..!

I know a lot of you must be wondering what has gone down so far, other than me going to the spa and soaking up every minute of room service and other luxuries before I got admitted…. haha yes, this phase is over. 

We started by going to the hotel for the night once we arrived, and I certainly indulged. The next day was the big admissions day, everyone was out enjoying the holiday weekend, and we were anxiously awaiting being admitted for good into the hospital. That was a stressing day. 

When we arrived at the hospital, everyone kept asking me if I was getting a transplant.. ha ha.. no, they are just taking my organs, not replacing them. Weird questions to ask, right?

So once we got in and started unpacking my two suitcases (he he) I started to feel a lot more comfortable. They even have like a movie on demand type thing on the huge flat screen, I have my own bathroom and shower, and the room is super cute and new. So I’m comfortable, at least there’s that. When I first got in yesterday evening, I was only seen by one doctor and just received my meds in the allotted times in the evening. I was thinking I might get off easy and not be poked and prodded too much, think again! It started with the resident asking to examine my abdomen, they always want to do this. The minute I tell them I have chronic pain in my side from my last surgery and that I want to vomit when I even try to touch it, they automatically feel like touching me! So he tells me… normally when we have tumors on the liver, we dig deep with our hands and try to feel the liver. ARE YOU F*CKING KIDDING ME?! The liver is far dude, get those hands outta here! That was the end of that conversation. 
Today is a whole new day, I’ve had four different residents come in and speak to me about my surgery. I’ve had a anasthesiologist come to speak to me about the risks associated with trying and controlling my vitals during the operation, I’ve done an EKG, I’ve done a chest x-ray, blood tests, oh my god. Each time I’m sleeping, and to be honest I’m just exhausted lol. It’s hard being in the hospital!
So because the plan is not 100% clear until they open me during surgery, just because these tumors are so hard to predict… I don’t have an exact plan of what’s happening yet. However the anasthesiologist explained that because I’m losing a kidney, and they are resecting a part of my liver just those two things increase my chances of bleeding and further complications AFTER the procedure. I mean, I’m so hung up on worrying about what’s going to happen during the surgery.. I forget there’s internal bleeding, clotting, bile leakage.. etc. There’s also a tumor that’s attached to my small bowel, so they have to do a reconstruction in order to remove it and safely make sure my digestive system will work afterwards. There is just so much to take in, I literally don’t know how to feel nervous, because there’s so much to think about it! 

Apparently this time around they plan to keep me in an induced sleep to make sure they can allow my body a full chance to heal. So I will be definitely spending time in ICU, I have a VIP bed reserved already 😉 EW!

I will speak honestly when I say… shit is starting to get real, I’m still okay… but increasingly getting a bit more concerned. Which is completely normal, I actually think it’s abnormal how calm I am, but it is starting to sink in.

On a side note, this hospital is actually BEAUUUTIFUL and everyone is super nice. Even the food is good 😛 who would expect that?!

More updates to come… but for now, I’ll leave you with this

Not bad huh? :)

Not bad huh? 🙂

I will be healing in style! 😍

Remember earlier in the week when I decided I really really had to have my bedroom re-decorated?! HA! Well, it’s finished!!!

Can I just say….

OHEMGEEEEE!

I know I say Serge is just amazing so often, but I’m telling you….. he IS amazing! 💜 Being married to me is not an easy task, and keeping up with all of the ideas in this vessel is nearly impossible… Unless your name is Serge and you love a crazy woman named Miranda 😜

It is my last night home, I’m freaking out and super nervous but now I’m totally distracted which is exactly what I wanted. Tomorrow we will check into the hotel, and Monday I will officially be at the mercy of the new Montreal superhospital. I also start ANOTHER pre op treatment tomorrow, which is full of promise to make me feel as icky as you can imagine. However… none of it matters because I’m so so happy about my brand new healing bedroom which will become my sanctuary once I’m home! Woo woo!

On a side note… Can we just talk about packing? Oh my goodness, the struggle is real my friends!

“I wonder if people will judge me for having two suit cases”

“I wonder how people pack less than I do”

“I can’t imagine not having my lotion, soap, facial wash, body wash, shampoo and conditioner, hairspray, leave in conditioner, brush, comb, makeup, straightener, blow dryer, all color coordinated slippers, matching pajamas, matching robes, cute and comfy tshirts, cute yoga pants, cute sweaters, my own comforter, iPad, headphones … Etc etc”

I can go on and on people!

I feel like this is totally warranted, I dont want to be without my simple comforts! 🙆 Do you agree with my insanity?!

Okay okay, time for before and afters of my amazing new room!

My brand new lifestyle base was delivered today, it’s hiding under all of the luxuriousness that is my bed! It will lift any way I want it, it will massage me when needed, it will be my bestfriend*

This was before ….

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AFTER:

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You can’t stop caring …

Cancer doesn’t care if you want to live a long, happy life. It doesn’t care if you made plans, have a goal you want to achieve, or just… make it a few extra years than they said you had.

I think the moment you stop caring, it wins.

Your perception is your reality”, Serge and I were discussing this lately (doctor phil lover) 😛

I decided that my perception of my cancer is that somehow I’m just going to beat the odds. I believe I will, I whole heartedly believe that I will not fall into the dreaded category they place us in when our pheochromocytoma becomes unmanageable.
This is where mine is right now, once pheochromocytoma spreads, there’s no longer a cure.

They call it ‘palliative’ treatments; surgery, radiation, chemotherapy, all of these procedures are simply designed to manage the harsh symptoms and buy you a little more time. The prognosis, 1-5 years. Five years being the best case scenario on record if the patient responds to well to the treatments. 1-5, 1-5, 1-5, I can still hear those numbers running through my mind like an endless math equation before a test. Except this isn’t a test, this is real life, and life isn’t supposed to last one to five years. Not mine anyways. 

When I first got diagnosed with metastatic pheochromocytoma, I read the word palliative treatments and completely dismissed it. It’s completely ridiculous, what do they know?! I ain’t dying!

That’s not what will happen for me, I’m going to get surgery and it’s going to be removed and I’ll go back to my normal fabulous self like before”

Well, I’m starting to realize that my perception needs a bit more reality…

Today was a bit of a wake up call, I met with my surgeon to discuss the last-minute details before the procedure is done on the 21st of May.

First off let me just say, I am so fortunate to be able to have surgery. I may complain about having to get surgery, but I am still thankful. In most cases of metastatic pheochromocytoma, surgery isn’t even an option. Sometimes there’s just too many and they consider it inoperable. Surgery is so so so dangerous for a pheochromocytoma patient, because at any given time… these little tumor grenades are just waiting to explode, which in turn puts your blood pressure and heart rate sky-high. (Stroke, heart attack) are the main concerns during the procedure. Yikes, scary stuff. I’ve done this before, I got this! Let’s just hope this time I don’t die at any given time on the table, pretty please!

The plan for my surgery has changed several times, with each new scan my doctors can see more and more. The only situation where the main plan will change, is when they have me open and discover something different from what they see on the scans.

So because my tumors have spread to my liver, they will remove a piece of the liver along with the tumors attached. Secondly, they will remove my right kidney which will debulk the largest part of the disease. The tricky wild card is the little dudes that are way too up close and personal with my vena cava, that’s my artery which is very much a big risk in any surgery. One little scrape and you’re out!

(I know this because this is what happened to me the first time)

This is an aggressive approach to be able to debulk as much as they can, in order to have less tumors to worry about and slow down the process of spreading into other parts of my body. I really thought all of them would be removed during the surgery, however because of the one tumor having major cuddle time with vena cava, it’s going to be too risky to remove them from one another. The tumor is squeezing the vena cava, which is not ideal for the people removing the deadly little thing. Lastly, they will try to remove any microscopic tumors they can’t necessarily see.. but can feel.

So that was the bad news, the best case scenario is I have most of the disease removed.. but not all.
 
This is my new reality.

Well, what do we do when things don’t go our way? Adapt! A close mentor of mine loved telling me to adapt, and I just hated hearing it! Now, I remember it with a smile and take that much-needed advice. 

I may not have a crystal ball, and I may be scared like crazy, but I have certainly not given up on myself. I have such respect and confidence in my team of doctors, and I am hopeful in what’s yet to come for me. They may not be able to remove it all for now, and there may not be a cure, but there’s still treatments I can get… and miracles that happen everyday. 

I never liked math anyway, so let’s just do without the odds. I’m going to BREAK the odds, I will make plans, set goals, and most definitely outlive that silly outcome.

3 more days until I’m admitted! Stay tuned for my finished bedroom re-design, and the continuous countdown until I go to enjoy the spa resort 😉 aka hospital, aka denial land is calling my name

#mirandastrong

Pheo VS Fabulous

Four more … Wait really?!

Mmmmhmmm, you heard right, four more measly days until I go into the hospital.

Oh em gee!

So as you know from my last post I decided that I wanted my bedroom to be re-decorated. Who knew these things took time? Time that I don’t feel like I have, so it’s kind of stressing but will be all worth it once I’m in a beach paradise when I return from the hospital.

I really thought I would be taking on the world in my last couple of weeks before being admitted, I figured I would have a couple bad days and that’s it.

Okay, let me sum this up… I could not even muster up the strength to go to the spa, my favorite place in the world. Seriously, I’m not kidding.

I can’t imagine having more than eight tumors, when I had just one I was severely under attack… Now that I have eight, it’s like my body is under siege everyday, approximately every hour on the hour I’ve been having the most excruciating attacks. I have a new added feeling during my recent attacks, like my heart is trying to pump cement? Yuck.

So tomorrow I have to go back to Montreal again for the last time before I go in for real, my surgeons want to see me I suppose to discuss last minute details before surgery. I’m not a big fan of hearing the plan of action, because I’m only twenty four they want to be aggressive to give me more time. I didn’t even choose aggressive when it came to my RRSPs! 😂 I wish we could just be conservative and have the same outcome, but Cancer is not a paper you fill out where the worst thing that happens is you lose some money. Oh how I wish that was the only thing I’m up against!

It is strange not knowing exactly what the plan is, they can’t solidify an exact approach until they open me up and see what’s in there. Weird, right?!

I will update here after my appointment tomorrow to share what the approach is going to be in the meantime. 😷

My new bedroom should be done by Saturday, will post pics! 💕

#mirandastrong

Pheo VS Fabulous

One more week

imageWhat do you do when you only have one more week until  admitted into the hospital and have major surgery?

Re-decorate, obviously! 😂

I am so freakin excited, this may be not be the conventional way of dealing with things… but who ever said I’m conventional?!

So my thinking is…. I am going to be trapped in my room for the bulk of my time, and it’s so boring looking at something everyday that you’re totally used to. I just HAVE to change it, and what better than surrounding myself with a beautiful beach? This past season I missed my beloved cancun trip which we do every year, so I’m going to transform my room into that heavenly oasis I miss so much!

It’s going to be so fabulous, like a high end beach resort! YAY!

Of course I won’t be doing the heavy lifting, haha! I’ve felt like…… Well, a sick person. lol, I don’t know why I feel such a need to be ‘normal’ – I have realized this past week that I just need to accept that I’m ill, and I don’t always have to be 100% to be myself. So to distract myself from all the bad, I decided that making my bedroom into a fab beach house feel will make me feel better! Did I tell you I love change? I get bored of things before I even change them 😆 my husband LOVES that! 🙊

Stay tuned for my fab re-design for my at home hospital paradise! 😉💗

So let’s see how this goes! 5 days to complete the transformation! 7 days to go for the hospital, YUCK! Thank god for distractions ✌️🌈

Pheo VS Fabulous

I hate pain.

You may see me often refer to days I’m feeling awful, and wonder, what makes you feel that way?

Often when you have cancer, it’s not necessarily the Cancer that hurts. It’s the treatments, the chemo, the radiation, all that comes after. I’m not even going into the emotional toll that it takes, I’m strictly focusing on the physical aspect.

Having malignant pheochromocytoma is like a double edge sword, it will stab you with both ends lol. The tumors themselves actually do hurt, they cause pain and a boat load of side effects, then of course the treatments are also hell, so you kind of don’t catch a break.

There are the known side effects that the tumors are famous for, being that they are giving you extra amounts of adrenaline in your body… Which we often refer to as an ‘attack’ because there are times when the tumors are more active and it hits you all at once, this will normally make you feel suddenly:

hot, anxious, nauseous, tremors, severe sudden migraine, weakness, chest pain, rapid heart beat, sudden blood pressure spike, pallor, flushing,  and then you will finish by feeling like something just swooped down and stole your soul lol. There’s nothing you can do about it either, it’s just when it passes it passes. There’s meds to try and control heart rate and blood pressure, but an attack is an attack. Pheo has no mercy, and these happen daily to me, sometimes more.

Then there are the random symptoms, where they are not as sudden, not all at once, and just strange and annoying.

Not being able to sleep is a big one, some may feel you are under a lot of stress so it has to be that. I don’t believe that, I think when there’s an overload of hormones and adrenaline in your body, it makes it difficult for you to sleep. Sleep is a vital tool in recovery, so this is a difficult one to manage.

Another is a strange pressure in the face, around the eyes and forehead. It almost feels like it’s numb, it’s just an extremely uncomfortable feeling that can stay there for days.

Did I mention the heart burn? I never had heart burn in my life, now I get it all the time! I think this has to do with the placement of my tumors, not everyone experiences that. Speaking of which, even laying down in certain ways can make these tumors angry and release their potion.

Lately I have been getting surprises quite a bit, depending on which hormone is being released by the tumor, it will change the way the attack feels.

Most often recently I have been feeling like I have the worst flu you can imagine, every muscle, bone, skin, you name it. Any part of my body, is stinging with pain. Pain all over, suddenly I get hit with a truck running me over, for no good reason. Then you throw that heart rate with the chest pain into the mix, the soul sucking feeling, and a bit of nausea, yeah….. You aren’t leaving the house my friend.

Im going to be honest, staying fabulous is a lot harder than you may think. That’s our little secret!

I thought I would write a post that gives you a tiny glimpse into the day to day struggle someone with this disease experiences, it is important to know that even though we put on a brave fabulous face, it’s probably the most difficult thing to do when you’re experiencing the pain and challenges I just described.

I have ten more days until I’m admitted, and I still want to do so many things, please send good vibes to help me prepare! 🌈

Crossing my fingers I’ll feel a bit better soon to enjoy the last bit of time before surgery ✌️💕

pheo VS fabulous

#pheofabulous #mirandastrong #pheoawareness

No massage…. WHAT ?!

When I start feeling well, even just for a few hours, my brain goes into this place where I suddenly feel I’m invincible. I’m all better, I can just skip surgery and treatments because I’m obviously just an irregular human being who can live with adrenaline producing deadly tumors and be on my Merry way. Then reality sinks in, after you have that amazing day, it really catches up with you. For the last 24 hours, I have made a new best friend: my bed.

It’s humbling, it’s inconvenient, it’s horrifying. How can I go from that to THIS? It seems biologically improbable, but this is life, and even though I normally get my way, life is a little more bad ass than I am. (I know, it’s hardly fair) If I look on the bright side, I got to spend the entire time in bed with my husband, who brought me ben and jerrys, told me I was beautiful, and basically just proved as always to be the most loving and wonderful human I know.

I won’t say it wakes me up to the fact that this is my norm, because I’m much too stubborn to allow that thought into my realm of thinking. I will however say I’ve seen a new side of my opponent. You can’t fear it, nor can you ignore it. So what are you left with? Respect. Just because you respect a strong opponent, does not mean you have given up. It doesn’t make you any less of a fighter, it just means you have to find new ways to outsmart it.

Given the fact that I predicted some rough patches being that we are so close to surgery, I booked a spa day for my husband and I. A day to renew our bodies and minds and just let the heavenly spa feeling envelop us and come out feeling ….new. A day to soak up all of the over priced organic cleansing deliciousness that they offer, a day to just forget about everything except soft skin and blueberry detoxifying scrubs.

This was until I heard the most unfair news in the entire world, apparently you can’t have a massage when you have Cancer. Any type of cancer, let alone a Cancer that is little grenades of adrenaline in your body. WHAT?!? What kind of evil injustice is this? The people who need a massage at the spa the most are the ones who are unable to do so. F&@/$, ok I’m done my little rant.

The whole reason why I started this post is to share this very important fact. DO NOT GET a massage if you have Cancer, or perhaps other illnesses as well before checking with your doctor and the professional providing the service. I honestly thought having a lymphatic drainage style massage would decrease stress and promote circulation which would in turn be beneficial for my body before surgery. Well my goodness I was wrong, so no matter how ridiculous you feel it is to fill out those medical forms at the dentist, spa, or any place it seems irrelevant or too personal, it’s not. They are doing their jobs, and they are doing it right. It’s for your own safety, and I’m so thankful a friend of mine actually pointed out it could be dangerous to have a treatment like that done with my condition.

Well, the spa IS still my answer to everything, I did not abandon entirely just because I couldn’t get a massage 😛 we are still going for facials and a peaceful lunch by the beautiful river and it is going to be divine. See? I told you I would find a way to outsmart our little frenemy.

Tomorrow is going to be a new day, a day to makeup for the fact I’ve been feeling horrible for the last 24 hours, so there! *sticks tongue out* #winning

xox

Pheo VS Fabulous

OMG, spiders everywhere!

Barbie picnic day sort of reminded me of Barbie yacht day, you have dreams of something cute, relaxing, and full of sunshine and instead you get 8ft waves and fish blood. Well, that time anyways! This time I was genuinely surprised to find so much…well, nature. Gross! Okay okay, although the scenery was absolutely fabulous, and it was quite a nice place to visit… it did not meet the requirements of having a picnic.

Keeping in mind, for those of you who know it.. we were at Bates Island, which is far from any sort of wilderness-like fortress (or so we thought!)

Enter: groundhog throwing me major shade, followed by super aggressive geese getting all up in our grill

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It may sound quite lovely to most of you, wildlife surrounding you while you have a wonderful picnic. Well, I would have agreed… until the spiders attacked. This is not just one or two, this was like.. an army of spiders. An army just waiting for us to unload ALL of our picnic supplies so they could invade my perfectly happy barbie day. GAME OVER, let’s take this beautiful spread to somewhere we know and love…

My fabulous home oasis!

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God, why didn’t we think of this to begin with? 😉 Okay so it’s kind of cheating to have your picnic in your own backyard, but whoever actually ENJOYS being violated by the predators of nature needs to just give their head a shake, I’m kidding.. kinda.

Days like these just allow me to be so thankful. I rarely feel well enough to be able to do these sorts of things, even though they are meant to be fun and relaxing, for me it’s physically taxing and can feel like small defeats not being able to do something so normal and calming.

The best part of my day was seeing Serge so happy to basically see me as my normal self. It was the first time in a long time that I could see a sense of calm wash over him, and people often forget how difficult it is for the people closest to you. They feel helpless not being able to fix you, and you feel defeated not being able to feel better so they don’t feel bad. It’s an endless cycle, which is why it’s best to just enjoy days like today, days that fill you with joy and restore your outlook.

Twelve more days until I’m admitted, and I plan on using every minute of them doing something fabulous!

Here are some photos Serge took with his fancy camera I got him last year, be prepared for a whole lot of fab! 😛

#mirandastrong

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Laughter IS the best medicine

Laughter doesn’t come without side effects, like any medicine it has it’s down sides. Feeling like a did an ab-work out, excessive eye watering (hello eyeliner?!) and facial flushing are just some of them.

I’ll take laughter as my medicine every single day 😛

With only twelve days to go until I’m admitted, I have this incessant force that is driving me to cram every single little thing in before!

These things are not what you’re thinking… I can pack and prepare for the hospital the day before, I’m talking about the fun stuff! Laughing until you cry with great friends, going for a fancy picnic just because, taking a total ‘me’ day at the spa (haha that’s everyday) Let’s be real, I do these things all the time anyways! However they suddenly have a new weight to them, like they are symbolic of something..but I don’t want to think about that.

Either way, I plan for these next twelve days to be even MORE fabulous than my usual self, let’s see if the old ball and chain will keep up with me (my stupid pheos)

First stop, have best friends over and laugh until you cry as I mentioned above. Follow me for the rest of my adventure leading up to the black site. Let’s call it that, make it a little mysterious and bad sounding.

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Pheo VS Fabulous

*BREAKING NEWS*

The date we have all been waiting for: May 21st

I’m so used to counting down the days for my birthday, christmas, anniversary, vacation, basically any event that I get gifts. (haha) Am I kidding…?

Surgery day my friends, the day has come.

My candid advice to cope with insurmountable stress? Go to the spa, (obviously) and smile every single day.

The next sixteen days will be an interesting ride, sh*t gets real when they give you a date.

A date that can mean so many different things; a day to overcome your fears, another scar to mark your ongoing fight with something that is bigger than you, a day that will make you even stronger than you ever thought possible.

This year approximately around that time, I would be marking the anniversary of my five year pheo free mark (and of course enjoying the May long weekend drinking awesome drinks and eating awesome food and overall just soaking up the awesomeness) – mean girls reference for those of you living under a rock

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Although life will never go as planned, I am certain that the most difficult times are neccessary to fully appreciate the good you are given.

What’s that famous saying? What doesn’t kill you, makes you stronger? Well call me the hulk because I sure as hell am not giving up just yet.

Pheo VS Fabulous

#mirandastrong #pheovsfabulous #pheoawareness