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

My first date with Glen

I know I know my husband’s name is Serge, Glen is the new super hospital! Today I went to see my endocrinologist at the brand new soon to be my home away from home.

I looked super cute for him too, (Glen, that is). He didn’t say anything but I knew he was thinking it.

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My endo and surgeon are going to have a meeting today to discuss my official date of surgery, (will update here once I get confirmation) I got my MRI results, my tumors have been taking all of my food and got a bit fatter. I guess that’s why my attacks are worsening, they are getting stronger. Other than that… he had to increase my phenoxybenzamine dose since my blood pressure is just NOT having it. Seriously BP, you need to take it down a notch.

I’m starting to feel like I have to cram everything into a small window of time, which is difficult to do when you want to run at a gazelle like speed but your body only allows for a slug like motion.

So other than just making me feel even more horrible with my nemesis drug and my tumors growth, I do not have very much to report. Glen was beautiful, he’s my kind of guy.

Stay tuned to see all of my fabulous hospital fashion, whoever wrote the ‘list of things to take’ with you to the hospital in pre-op, clearly never met me.

Pheo VS Fabulous

Pretty please…

So I have a little confession to make… I’m sure you had no idea, and I know it’s hard to believe, but I am very stubborn. No really, I know you’re shocked, but it’s the truth. When I hear the word no, I’m all …

What does this 'no' mean...

Which brings me back to when I first found out the hospital I was being treated out of in Montreal, QC was being shut down to move to a glamorous, shiny and new location that they were calling ‘Super Hospital’

I couldn’t accept having my surgery in this old hospital… I just simply cannot fathom not being able to get my surgery in this sophisticated and impressive looking facility. Okay, time to pull out my negotiating skills.

When I suggested to my surgeon back in January that he perform my surgery in the beautiful new super hospital, he laughed and there it was… “No”

Okay okay, I’m being a bit hard on him. He didn’t coldly shut me down for no good reason. The new hospital was doing its first hospital transfer April 26th, so the earliest would be May they could perform my surgery. Oh, I should probably mention my surgery was originally going to be around January.

When I first started seeing my dream team of doctors back in November, they wanted to be sure that they knew every single detail of my newly metastasized disease. Knowledge is power, and in this case… could be the ticket to some medical breakthrough later down the road. With this thorough no-nonsense approach, I would have to go through a series of tests… and by tests, I mean….

  1. CT scan
  2. MRI
  3. PET scan
  4. MIBG scan
  5. OCTREOTIDE scan
  6. PET scan repeated
  7. Renal scan
  8. MRI scan repeated
  9. Heart ultrasound (Echo-doppler)
  10. Blood tests X 20
  11. 24hr urine analysis X 3

Basically in that order, I wasn’t kidding when I said they are thorough. These kind of tests ordinarily take months, sometimes years to get. I assume my doctors also do not know what ‘no’ means because that’s a whole lot tests to get done in 3-4 months. I was thrilled to participate in testing that will allow them to better understand my disease, pheochromocytoma tumors are extremely difficult to predict. These tests would also letter help in deciding what treatments I will inevitably have to receive once surgery is no longer possible.

Understandably so, the January timeline became a plan of the past. I was still receiving more tests and preparing for surgery, which has been more challenging than they thought.

(My tumors inherited my unapologetic stubborness)

Still a bit miffed that I was turned down to go to the shiny new resort-like hospital… I realized April 26th isn’t as far as it once seemed. Ha! Maybe I will get my way after all.

So I asked again, I kind of asked as if we had never talked about it. I explained that it almost doesn’t make sense to do my surgery in the old hospital, what if a complication happens and I end up staying longer? Then I’m one more body added to the transfer list, and I just cannot take being transferred across the city after MAJOR surgery (this was all true)

Not only that, but I researched the new superhospital extensively … and I read there are only private rooms. How fabulous is that??

How can I get surgery and be put in a room for with other people, I will have to share a closet AND bathroom? (The horror!!!) I’ve done this before and was NOT impressed.

No but really, being in a room with even just one other person is not conducive to healing after a major operation, and increases my chances of infection. I am NOT taking any chances this time around, no sir, I need this new hospital and the beautifully designed private room and large closet and my own bathroom and city views..and.. and… oh sorry I went into the part of my mind that Serge likes to call my expensive place.

He said YES! My points made sense, and they were happy to support my wishes.

Woo-hoo, I haven’t lost my touch! 😉

This new hospital has been in the works for years, and 1.2 billion dollars later… it has opened it’s doors to the new Royal Victoria Montreal just a couple of days ago. Their new research facility is considered to be the most advanced in north america. 

If I MUST partake in another dreaded surgery, I will do it in the Miranda-style in a robot-like operating room thank you very much.

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New MUHC Glen site hospital shown above

Being stubborn isn’t always such a bad thing now is it?

Simple tasks are often the most challenging..

Remember how I told you the importance of staying fabulous?

I may have forgot that sometimes my pheo outnumbers me, eight to one. 

Can you imagine just showering is difficult? Lifting your arms to wash your hair? Bending slightly to towel off the water on yourself?

Lately everything seems like I have weights attached to me when it comes time to do a monotonous task that I’ve been doing all of my life, I should be an expert. 

That won’t stop me though, enter: greatest husband of all time

Scene 1, action! 

Me: sitting quietly in my barbie room drying my hair, just simply getting ready as I do most days

I’m suddenly hit with an incredible amount of adrenaline, I can no longer lift my blowdryer, let alone continue to do anything remotely involving strength or I may vomit. 

My hero saves the day, my unexperienced husband comes in and offers to finish my hair. 

“Hot rollers and all?” :O

This is a simple task to me, something I do every single day, and I just can’t continue. It’s a shitty feeling to say the least.

This may seem like a miniscule detail to some of you, but ask a man to do your hair who has about as much experience styling one’s hair as I have changing a tire and see how it makes you feel inside. My insides felt like a Burberry 70% off sale, (a girl can dream)

This significant act of kindness made me feel like less of a sick person who couldn’t do her own hair, and more like a superstar who’s having her hair done by the love of her life who’s putting on a brave face just for my benefit.

That’s enough for me to smile, and sometimes that is all that matters

See the finished product: I was impressed!!!

xox

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The honeymoon is ending

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May I just say that I absolutely hate surgery prep? I have to think about an internal invasion of my body in less than a month… AND I am required to make further effort by preparing for such event.

In order to lower my chances of my blood pressure and heart rate misbehaving during surgery, I must now fill my body with special drugs that are more potent and longer lasting than the traditional alpha blockers used for blood pressure. The drug of choice, phenoxybenzamine.

Otherwise known as, nemesis number two. (#1 being my little grenade tumors inside of me, of course)

During my first pheo, I wasn’t given this super power alpha blocker, because it’s not typically used in Canada. It’s not even approved by Health Canada, hello.. back to awareness! My endocrinologist had to request special permission to use the drug on me. (Is it weird that I felt kind of cool?) ha!

So the main concern is that going on this powerful blood pressure medication can also work too effectively. Making an opposite reaction, lovely right? I have to say I was expecting more! I was so concerned my blood pressure would drop super low and not be able to function, yet lately I’ve still been having spikes and my adrenaline attacks are getting worse.

My tumors are becoming more difficult to control, and I am definitely feeling their rath!

I may end up being admitted to the hospital earlier than the surgery to monitor me due to the increased activity of the adrenaline hormones. *Fingers crossed they have lovely sheets and a great view* 😉

So I am essentially starting to feel close to the worst I have ever felt with pheo, the attacks are stealth like… quick and painful. They are harder to predict and more aggressive.

From honeymoon…to divorcing these lethal tumors, I can finally say that although nervous as hell.. I’m surprisingly beginning to feel excitement for my surgery, here’s to hoping I dominate in this divorce proceeding!

#GETOUTOFMYBODY

Whoever else is on phenoxybenzamine currently, bless your soul! Anyone who has to experience the everyday agony of your angry tumors, PLUS tack on nausea, dizziness, a weakness that is basically debilitating, all without complaining? You are a dirty rotten liar (lolol)

Tomorrow I get to see the new super hospital I will be treated at from now on, it just opened yesterday, woo! *More on the new super hospital in my next post*

I will also have to take a new drug tomorrow, but don’t worry.. the LESS serious side effects are only headaches, drowsiness, hallucinations, confusion, vomiting and stomach pain, and a nice dry mouth. I would hate to ask what the ‘more’ serious side effects are … 😛

Hopefully tomorrow I’ll have more details on my timeline and I’ll update you guys on the beautiful new hospital, here’s to hoping for the Rolls Royce of hospitals!

True to my style, I have dedicated my days that I don’t feel like a zombie adrenaline monster to shopping for the cutest hospital wear and supplies, more on that soon my fellow fabulous friends!

Stay tuned…

Pheo VS Fabulous

Nobody will stand up for you better than yourself

I think it’s about time I share with you all the number one rule when it comes to your medical journey:

It’s your health, and only you have control of your future

I will take you back to the worst day of my life.

I was being continuously followed by my first endocrinologist that treated me for my first run in with pheochromocytoma in 2010. Every year I would complain of symptoms and share my concern that I thought the disease was back. Every year I would be re-tested for adrenaline in my urine to determine whether or not the disease had ever come back, and every year my doctor would repeat the same phrase,
“You’re fine”.
They didn’t do any further testing, despite my complaints and suffering.

I had no experience at this time, no knowledge of the disease, and although I knew what they were doing was inadequate based on the symptoms I was experiencing… I didn’t know what else to do, what could I do? I’m just me, I’m not a doctor, I can’t do anything.

Nobody will stand up for you better than yourself… 

I would return to her office one final time…  except I wouldn’t be told ‘I was fine’

I would give anything today to be told I was fine…

I would however be on the other end of a surprise assault, being told my pheochromocytoma was back.
I would later find out it had spread all over my major organs, it was malignant, metastatic, aggressive, oh did I mention I had 1-5 years to live?

I was 24

The difference this time?

I had experience, and I planned to use it.

Nobody will stand up for you better than yourself…

I was told that I would need another surgery, an even more aggressive approach than the first time (read: My first surgery)

After that I would have ‘management’ options, well if that’s the case…

If I was only going to have five measly years left, (at best apparently) I was definitely not going to settle for less than the absolute best to operate and increase my chances of survival and life longevity!

I wanted the best possible doctors who would listen to me, be motivated to help me, be ahead of the disease, and understand the difficulties that come with treating a rare illness.

Time to start researching, and becoming my own advocate.

I still have a whole lot of fabulous to spread around! Unfortunately with such a rare disease, there isn’t the same selection and expertise as other procedures… due to the lack of patients they see with this disease.

I was understandably distraught, and couldn’t accept this as my fate. I could not just sit back once I’m told such paralyzing news. So that night, charged with all of my extra adrenaline … (bad joke) I set out to find the best qualified pheochromocytoma cancer facility in the entire world! I would go anywhere, I didn’t care what I had to do, I just knew I had to do something!

Well, I didn’t have to travel the world. Although it would have been nice to find some spa-like facility that gives complimentary facials and pedicures after treatments 😉

It was back! My fierce determination, I only lost it for about 3 days… but still, shame on me! I was over the moon excited to find a multi disciplinary team of doctors. Specifically a very qualified endocrinologist specializing in cancer like mine, and a team of incredible devoted surgeons. I found my team of doctor House, and I was ecstatic. 

Now the only trouble was… I needed them to accept me! So what did fabulous me do? Try and get a referral from my doctor, go to the bottom of the pile and anxiously wait by the phone like a teenage girl? No….! I just e-mailed the site director directly, dazzled them with my fabulousness, and was crammed into their busy practice that following Tuesday! The rest is history.

Three hours away, I am being treated by who in my opinion are a team of super doctors that are highly specialized in such a rare illness, and eager to learn more and more through my experience.

Often people will not settle when it comes to trivial matters because they are easy to change, but why don’t we stand up for ourselves when it really counts? 

The moral of the story…. Don’t ever give up on yourself or take the convenient path, often it’s less rewarding. 

(It also doesn’t hurt feeling like a badass boss lady, not taking no for an answer!)

‘Follow’ me to continue to see the epic battle of Pheo VS Fabulous!

Fabulous,

xox

#pheovsfabulous #mirandastrong #pheochromocytoma