Tag Archives: life

I am Rare: 2021

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, cancer, cancer blogger, Cancer treatment, Caregiver, Chronic illness, Clinical trial, Endocrinology, Health, health advice, information, pheochromocytoma, Rare disease day, terminal illness, Unicorn by

If you had asked me six years ago what I was going to write in 2021 on rare disease day, I’d have told you I wouldn’t be here to share.

I’d have told you what they told me, I maybe have a year left.

I’m writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. I’ve dedicated every ounce of energy I have into sharing my journey, the ups, the downs, the discoveries. In hopes that someone would learn something from my experience.

I’ve always been a dreamer, but this was much bigger. Before I even really understood the impact of awareness, I truly believed that if I shared enough… I could make a difference. The type of difference that could prevent someone from hearing the words “it’s too late, it’s now terminal”. Like we did.

I believed deep in my soul that if I shared enough, I would finally be heard. Someone who needed it would hear me, fate would allow them to gain the knowledge they needed to push for a diagnosis.

I wasn’t even considering the fact that my experience could potentially better inform healthcare workers, and trickle down… creating a knowledge that would never be heard unless experienced by people like me living with the disease.

My first pheochromocytoma was missed because of a lack of knowledge about the disease, it wasn’t the fact that it was too rare to be considered, it just simply wasn’t thought of at all.

My second was different, the knowledge was there, but it was considered too rare to come back. It was overlooked because of the odds. The literature didn’t support what I was experiencing, so it couldn’t possibly be that.

Four years after my first one, I was finally diagnosed with a recurrence. It was misdiagnosed for too long, it spread all over. It’s terminal. I was told I’d have 1-5 years to live max, ‘based on the literature available’. The literature, the incredibly vague and unreliable literature. So little to reference and gain the knowledge needed to empower the patient or even the doctor.

This is when we realized it would become vital to my outcome for us to learn for ourselves. We had to take control of my situation, we had to look for the most knowledgeable doctor to treat me.

We didn’t want to accept my odds. So we started down a new path of self advocacy, learning, and sharing.

I started my blog, documented every treatment, feeling, reaction, change, anything.

I figured, if I’m going to die, I want to leave behind the gift of information. I wanted to re-write the literature. There was such a gap of information at that time, I wanted to help fill a small part of it.

As I shared, I started to connect with more and more people. I was learning more every day. So I kept sharing what I learned.

This new wealth of information would impact my treatment decisions, my ability to strongly advocate for myself, and be part of all decisions regarding my health.

That’s the thing with awareness for rare disease, it’s not just a cute buzz word. It’s life changing. The information we received from others was what kept me alive. It’s what allowed me to bring up my own suggestions, and avoid doing things I knew wouldn’t work for my situation.

Each new step of my journey, I would share with others, and the cycle would continue. The wealth of information and knowledge keeps growing, and we keep changing outcomes. We keep improving quality of life, and we help healthcare professionals better understand us. Leading to proper care and diagnosis.

Of course I can dream so big that if we become less rare… it can lead to a cure. And yes, it can. One day.

But for right now, I’m focusing on preventing it from getting to my stage in the first place. Where it’s incurable. If we can share enough, if we can continue to become less rare, it will be diagnosed earlier and able to be treated.

For those of us who are past that stage, like me, becoming less rare means proper treatment protocols, better treatment options, symptom management, improved quality of life, and the knowledge to be treated effectively in emergency situations. I can’t tell you how many times I’ve been asked…

“well what do YOU normally do when this happens?”

The knowledge we share will continue to educate all parties involved, making situations like this happen far less often.

I actually never dreamed of a day where I’d hear “because of your blog”…..

That’s the power of sharing, the impact of awareness.

It shouldn’t fall entirely on the patient, but our experiences are how we all continue to learn.

I am still here today because of knowledge, because of awareness. Plain and simple.

Each new mind that hears the word “pheochromocytoma”, has the ability to share that with someone else, and so on. You can never know how this will impact the person hearing it.

So keep sharing while you can.

I know I will.

The most suffering I ever experienced was not being able to use my voice. Not having the ability to share.

I hope you will help me continue to share my message, my story, my journey, my experience, and my dream.

Pheo VS Fabulous 🤍🦓

Sending you unicorn kisses, love, and pixie dust✨

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The Mighty Article

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Endocrinology, Health, health advice, information, net cancer, pheochromocytoma, positivity, rare disease, Survivor, terminal illness, the mighty, young cancer by

Yesterday I shared a very personal blog that I felt could relate to a lot of people going through similar times.

Not even necessarily sick people, just people who have had fading relationships for multiple reasons after changes in their lives.

It seems it was really relatable because The Mighty approached me to publish my article!

If you missed it, here is the link !

Please take the time to read and share, maybe it can help someone more than you know.

Pheo VS Fabulous 💖

“Couple speaking out after psychologist coaches husband to try and kill terminally ill wife”

Posted in pheochromocytoma by

https://montreal.ctvnews.ca/mobile/couple-alleges-psychologist-tried-to-talk-husband-into-killing-terminally-ill-wife-1.4667916

Zebra or Unicorn 🦄

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, cancer scan, Cancer treatment, Caregiver, Chronic illness, chronic pain, Clinical trial, Cortisol, Endocrinology, Health, health advice, inspirational, Love, Montreal, net cancer, Octreotide, palliative, pheochromocytoma, positivity, PRRT, Radiation, rare disease, Rare disease day, surviving cancer, Survivor, the mighty, Unicorn, Vlog, young cancer, zebra by

If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra.

When you hear hoofbeats, we are trained to think horses, not zebras … 🦓

This means that in a world full of thinkers where the first answer is always to rule out the “obvious” answers first, us “rare” zebras often get misdiagnosed because it’s just too bizarre or too complex to possibly be real. Right? Wrong. We are real, we are rare, but we’re there.

NOW, imagine living in a world where you’ve only JUST started to find ways of settling in becoming a zebra, but now….. you’ve become even more confusing that even that doesn’t fit – Shall we say….. exhausted? Now you must be a unicorn 🦄

As much as I LOVE unicorns, it’s not something I wish to be health wise. However, we don’t always get what we wish for…

Or else I wouldn’t be a continuous medical mystery. A zebra, a unicorn, stomping my hooves as loudly as I can to no avail… A very complicated, extremely complex little unicorn. So desperate to be figured out but constantly misheard, misunderstood, and continuously misdiagnosed.

I was able to begin discussing this journey when I began to regain my mental stamina a few days ago here, thanks to my amazing specialists who are working towards figuring out what I am now referring to as my puzzle 🧩

With so many pieces (symptoms), and crisis’ happening – it’s proved difficult to sort out another compounding diagnosis when already living with such a rare disease.

Does that excuse make it okay for our hooves to be ignored? No. It clouds what is potentially a more potent and dangerous lurking enemy. So, what does one do? Well I’m not going to lie. It’s been a hell of a ride, it’s been isolating, I’ve felt ways I can’t begin or want to describe right now, but what I’m here to say right NOW is that we are still fighting. 

I’ve said it now and I’ll say it again, if you don’t fight for yourself… who’s going to fight for you?

It’s the unfortunate truth.

This is your life. It’s yours to save.

We have come to realize this through a series of challenges I’d prefer to have not had to endure, but change is the only constant … so we are now looking ahead to the journey we are choosing to see as a positive one. Because that’s how you get through this, often we talk about ‘fighting it’ but we don’t talk about how to beat it. 

We have to, because to us we see it as an opportunity FOR change, for answers. We just want answers. No matter what they are. Going back to basics and feeling helpless is certainly not the answer.

Going backwards when you have already been robbed of the ability to move forwards is one of the most helpless feelings to have in the world.

We are coming on 3 weeks in the hospital, with the help of my incredible team I am functioning at a much more tolerable level so far – so that I can actually do plenty of testing in order to get these answers. This journey is tough, but we are fighting our hearts out. I hope you will be alongside with us, because I have a feeling we might just need that little extra bit of prayer and pixie dust

🌎✨🌈

Remember that gold standard Gallium-68 super amazing impossible-to-get fancy scan I got in order to get accepted to this clinical trial a while back? Well…

My amazing husband Doctor cupcakes was able to get me in AGAIN directly from the hospital on a day pass to get that super amazing scan today. What would normally take 4-6 weeks, took 48 hours, so a huge huge huge thank you to everyone in Sherbrooke, QC. You guys truly were my angels and we are so grateful for everything you did for my situation. Thank you for understanding and extreme considerations 😭😷

My heart is so full of gratitude, and I wanted to take this opportunity to share that.

Here’s a little glimpse of our radioactive day pass mission, a day in the life of a hospitalized unicorn 🦄 😂

https://youtu.be/AHerMoNa9AY

Pheo VS Fabulous

XOX

I will try & update as much as I can, (on my good days) 😘

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💝

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Create your own Fabulous

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, christmas, Chronic illness, chronic pain, Clinical trial, Endocrinology, Health, health advice, information, inspirational, Love, magazine, Montreal, pheochromocytoma, positivity, Radiation, surviving cancer, Vlog by
Instead of running around for last minute gifts, decorating the tree, attending fabulous parties…

The tradition we have manufactured the last three years is driving through snow storms hours away, telling each other everything will be okay, waiting for treatments that will dominate the rest of our year to come… and hoping the magic of Christmas will just somehow make everything better.

Each year I watch the first snow and it’s my symbol of hope…

I imagine that snow falling on me and just washing away everything I’ve been through in the previous year, starting anew.

Each year I wait for Christmas to allow those new beginnings; a new chance for me to heal, be in less pain, for my husband to suffer a little less.

…Back to reality

Like clockwork, my cancer always progresses to its worst state in the months following up to the end of the year, until I can’t take it anymore, and we are forced to take action. Most likely because I’ve done treatment all year long, and it’s my body’s way of saying enough is enough … or hey, why did we stop?

Either way

All of the tests, pain, investigations, right before Christmas.

“Do I really have to travel now? we’re days away!”
“We also need to know what’s wrong with you, and we’re not taking any chances, your condition has been too bad lately”
“I know. It’s just so frustrating how this happens every year”

True. I’ve felt awful as of late. Actually, Awful can’t sum up how I’ve felt.

This year is a little different…

I’ve done a year of (P.R.R.T) treatment that’s made my cancer worse.

That was a hard one. ⬅️

This IS the time to go and figure out what to do, where to go from here, there could be NO options for me, but I simply don’t believe in that 💫🙃

…There’s so many quotes out there

“Create your own happiness”

“Be your own sunshine”…

Well, I say Create your own Fabulous.

There’s ALWAYS something else, the question that always remains… are YOU willing to fight?

The answer is always yes.

The days leading up to my appointment…

I made a choice; my body had been fighting me hard, new chest pains, breathing trouble, my tumors alternating between pain crisis and adrenaline outbursts every hour.

….I was done

Which led me to my choice, do I abandon who I am, use the one opportunity I have to leave my house in weeks and go out looking as shitty as I FEEL?

Why should my outside match my insides?

Do I say F you Pheo and try and feel like my normal self as much as I know how? As much as every part of my body is telling me I can’t, what’s the point, just go like you are, it doesn’t matter.

The ‘normal’ me that brightens up those cold white walls, the me that regardless of the dark cold stormy weather, I bring that sunshine, the me that laughs off anything because I’m ready for everything?!

THAT is MY cancer.

Being prepared for just about anything..

Being fabulous despite the odds

I created.my own.fabulous

Why?

Because morale is everything.

Cancer is still going to be there despite the way I look, but it makes me FEEL a heck of a lot better when I don’t look like I have cancer 💋

So the next time you’re dreading those cold white walls surrounding you, you’re anxious for that inevitable news, you don’t want to get that scan…

  • Don’t take that extra hour of sleep
  • put on that darker shade of lipstick
  • curl your hair
  • throw on a bit of mascara
  • gurrrl contour and bake that face if you feel up to it

Go all out! 😂✨💖

I didn’t forget about my guys!
  • Give yourself a nice shave
  • wear that new dress shirt you were saving
  • gel your hair
  • put on a light (hospital friendly) cologne 😅

Do whatever it is that makes YOU have a bit of extra confidence & less sicky feeling 😉😷❤️

Most importantly, remember….

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

Are you guys following my new FACEBOOK and INSTAGRAM?! 🙏🏼💖✨💄➡️👤 FB: Link ➡️📸 Insta: Link @mirandasimard

Merry Christmas my loves ❤️

This is Cancer.

Posted in adrenal cancer, advocate, awareness, Blogger, cancer, cancer blogger, Cancer treatment, Chronic illness, chronic pain, Clinical trial, Endocrinology, Health, inspirational, Love, net cancer, palliative, pheochromocytoma, positivity, PRRT, Radiation, rare disease, surviving cancer, Survivor, terminal illness, Video, Vlog, young cancer by

How do you tell the ones you love… something you can’t begin to explain yourself”

I moved into my dream home 22 days ago

Twenty two days of contemplation and careful thought of how I was going to share this, or whether or not I would. I’ve always said I would share the good, the bad, and the fab.

I thought I would have so much to celebrate with my move, my clinical trial finishing… so many triumphs.

…But Cancer doesn’t work that way.

I couldn’t write this.

I want you to see what we live through in between treatments, not just during, I want you to see the hope, the pain… the before, middle, the after.

This is why Pheo VS Fabulous exists.

 

 

Please watch the full video 🎥
Pheo VS Fabulous has reached so many people around the world, my dream is it will continue to do so. 🌎 Please keep sharing, keep following, each time you do it’s one more person who is diagnosed sooner, or who finds hope 💫

I never want anyone to have to feel what I feel – Pheo vs Fabulous

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I am rare – Rare Disease Day

Posted in adrenal insufficiency, cancer, Cancer treatment, Chronic illness, endocrine, Endocrinology, Health, inspirational, net cancer, pheochromocytoma, positivity, rare disease, Rare disease day, surviving cancer, terminal illness, World cancer day, young cancer, zebra by

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

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

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

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

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

Rare disease day, 2016

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

image

It can only get better…

Posted in adrenal insufficiency, cancer, Cancer treatment, Caregiver, Chronic illness, Endocrinology, Health, Mibg, net cancer, pheochromocytoma, Radiation, rare disease, surviving cancer, young cancer by

WELL I CERTAINLY HOPE SO.

I keep being told it will be worse before there’s a chance of it getting better… I’ve had quite a bit of proof of the first portion of this statement, now I will have to practice my patience and good faith for the second.

MIBG, NOT my favorite treatment.

So far we have not gotten along so well you could say… I’ve been meaning to update everyone since my last appointment and share what I know so far. Except I really haven’t been well, and I had a pretty big dose of reality lately.

As much as I like to share when things are on a positive note … Well, the reality is, living with this disease is often dark and all consuming – although I AM bright and try to find the good in everything despite this constant torment, there are times when I must be candid and speak through my pain and suffering. I’ve actually been telling myself, “I’ll wait until I feel better to update, I’ll wait until I have something good to share” until I realized… That isn’t how MY life works, I wish I had the luxury of blocking out all of the bad and fast forward until I had something good to hear, or skip over all of the parts where I suffer and wait until I feel better…

I also know that nobody else expects that of me, so here I am, sharing the in between with you, I may even throw in an f bomb if you’re lucky. That’s how angry my pheos are, yes I’m blaming any profanity on the tumors, they’re really being assholes. MIBG has got them all kinds of angry… Let me just tell you. Ok, where do I start?

So it’s been 22 days since I had MIBG radioactive iodine injected into my blood stream, 22 days of radioactive pheo cancer hell, 22 days of worsening symptoms, and every day is a new adventure. Rather than get better, I get worse. See how fun that is? I thought the idea was that you get better as the days went on, most people do, NOPE. My symptoms get stronger, more aggressive each day, it’s super awesome. I like the spontaneity and danger of it all I guess, who wants to wake up and be normal for a day? How boring. (I would also like to be excused from any and all sarcasm, I’m going to blame the excess of Catecholamines (adrenaline) being made by my angry tumors, thereby making me very sarcastic… I think too much epinephrine and norepinephrine makes people very sarcastic) Science. YES! Science.

We went to my last appointment with some expectations and no expectations: I’ll explain.

Some expectations meaning… We thought we were going in to do a day of tests, and meet with my pheo Doctor, and have an idea of how the treatment was working so far. Since I was doing another MIBG scan, 2 week blood work, we were under the impression that we would be seeing how the treatment was taking.

What I meant about having no expectations? Well, I didn’t want to get my hopes up, so when nuclear medicine told me I would be having a MIBG scan 2 weeks after my treatment to see how I was doing, I didn’t want to get too excited about results, so I remained neutral, and said to myself “I’m going to go in with no expectations, that way I can’t be disappointed”

It was the first time I had left the house since treatment, it was an incredibly hard day. We drove out normal 3 hours to the hospital. The scan was long, painful, with the way I feel it’s so hard to do just about anything…Being scanned for 2 hours is not ideal, Laying with my arms above my head for 52 of those minutes isn’t at the top of my list. Then I gave blood, and then I waited to see my doctor to discuss the results of my blood, and maybe the scan.

We then saw my doctor, and at this point we realized there was a misunderstanding, the scan wasn’t being done to see how the treatment was working. It was actually being done to take advantage of how much MIBG radiation was in my body, and the MIBG scan was being done at this time to find any MORE cancer that’s potentially in my body that otherwise would not be picked up normally in regular circumstances with trace amounts of MIBG. NOT what I was expecting…. Good thing I had no expectations LOL. We went from thinking we would hear how the treatment was working, to hearing they were looking for MORE cancer.. So, not in any rush for those results. Moving on!

So once we got that misunderstanding out of the way, we then of course asked when it would be that we would find out if the treatment was working or not, since it was clearly not now. It turns out it won’t be for a while, it’s a long process, a few months. We will revisit this in a couple months, maybe at that point we will start having an idea if the treatment is lessening the output of adrenaline the tumors are having.

The main priority over the next few months is just constant monitoring of all of the other complications that could potentially happen from the treatment itself, and making sure my bone marrow doesn’t deplete, I don’t get any infections, my tumors don’t kill me from all the adrenaline they are producing, and we control all of the worsening symptoms and side effects being caused. Easy peasy.

It’s a long process, I will be feeling like this for a long while. I knew that, but it’s hard to know what to expect until you’re in the situation. Surgeries are the most difficult things I’ve had to endure, but I’ve known what to expect once they’re done, this is so different, because not only is every day a surprise … I also can’t know if it’s even worth doing in the end.

It seems like every couple days we are increasing all of my medications to try and control my vitals, to keep me out of the hospital, and despite these efforts… They’re still out of control. I literally have left the house once since I have been back, the stairs are a danger zone, getting up too quickly is a danger, going to the bathroom is a danger, showering is a HUGE danger, breathing too hard is a danger.
It’s not as if I am doing anything at all to provoke these episodes, I cannot cut down my activity level any further… Existing is and breathing is all that is left lol. When you are told to stop showering, because it is a danger to your health, it is quite frustrating.

I can be sitting in bed doing nothing at all, and when these new “MIBG spikes” is what I’m calling them – happen, it feels like my heart is being dredged in cement suddenly, and it takes everything it has to beat… It hurts so much, each beat is accompanied by a very unique pain, and my head is filled with pressure, so much that my eyes feel like they’re going to pop out of my face, my chest is filled with pain, and it feels like I am having a heart attack. This lasts for a few minutes, and then I’m so very fatigued… And nauseous, I feel I could sleep forever. Except then I am plagued with insomnia later at night. I’ve had plenty of pheo attacks, I still do, except this is above and beyond those, it’s the effect of my blood pressure sky rocketing while my tumors release a dangerous amount of catecholamines from the MIBG treatment. The problem is that … my medication continues to be increased, which should lower this, except this continues to actually go higher and higher, NOT supposed to happen. So I will continue to do nothing, relax, and just endure this vicious assault MIBG has on my body, because what choice do I have? It’s scary knowing that every time this happens, thinking about the damage it has on my body, I try not to think about those parts, I try to remain naive to that, you can only do that for so long though.

I will continue to be closely monitored, AND I decided while writing this…. The good I am taking out of this so far, is … My bone marrow is good so far!!! (YAY) for strong marrow results, that’s good right? SEE, I knew I’d find a positive in there, f*ck you pheo. I also found an f bomb, HA. I will continue to go every 2 weeks to do blood, make sure I’m alive, check my cell counts, make sure my thyroid is functioning… And all of these other great and scary things. SO MANY COMPLICATED FUN PUZZLES! So….. Let’s hope I can stay out of the hospital between then, yes?! Today was A SUPER CLOSE CALL, crisis level was high in the Simard house, Doctor Serge to the rescue as usual, formally known from now on as doctor cupcakes (lol) – when in doubt… Just prescribe cupcakes. Words to live by

Hm what else…. Oh! The taste of eating batteries has calmed down a bit also, that has been a welcome change! It’s not quite as strong. Yes yes more good news! See, as I continue, I find more good. So yes even though the adrenaline, heart, blood pressure, vital elevation attack side of things are worsening …. The taste of batteries has decreased and my blood work was okay so far, SOOOOO there’s a bit of a bright side. Now we just have to make it through the next 6 months or so of this, and we are smooth sailing.

The last time I put on makeup was Christmas, a random thought I know, but it is strange not physically being able to do anything.. Especially things that were once just an everyday routine for me, now they are a “luxury” Now since I am barely allowed to shower – or closely monitored when doing so because it is my most dangerous activity, (you should see the calories my Fitbit claims I burn just by breathing) 😂 I’m gonna get really crazy and say… I really would love to be able to be normal and plan a vacation, or EVEN just go out for dinner one night, or actually just do anything at all.. At this point I’d like to just be able to walk up or down the stairs without my body imploding. I would like to be able to go a day without my body attacking itself while doing nothing. So I will say this, I’d like to be able to soon be well enough to just .. Have a day where I can feel good enough to just leave the house, change my surroundings, and feel like my normal fabulous self for even just a few hours. This is me being realistic with my expectations, I will find a way to be FAB… I always do 😉💋

Day 22, I pray this disease will become a little more manageable – because nobody should have to fight this hard.

I promise to update as my body allows, but for now…. It is tired xox

Pheo VS Fabulous

Remedy for the Rare – MIBG

Posted in adrenal insufficiency, cancer, Cancer treatment, Caregiver, Chronic illness, Cortisol, Endocrinology, Health, inspirational, Mibg, Montreal, net cancer, pheo mets, pheochromocytoma, Radiation, rare disease, surviving cancer, young cancer, zebra by

Well this is awkward… I think it’s been 12.. days, I don’t even know quite honestly, I’m completely disconnected from the world right now.

I kind of left all of you hanging, I apologize for my absence. I was just having MIBG radiotherapy, no big deal, my tumours haven’t been very happy with me that I turned on them again, and my body doesn’t like that I injected it with a radioactive foreign substance that seems to be making it feel all sorts of nonsense. Basically we’re in a fight, or rather a war, my body and I, and my tumours, I think they may have even joined forces and are ganging up on me it seems… because their wrath, WELL, excuse me… it’s not something I was quite prepared for, even in my best attempt: MIBG you can read here how prepared I thought I was (ha!)

Before
MIBG

You’re never quite prepared for the level of rare you experience when having a treatment administered into your body that could have so many different outcomes. It’s not as if it’s done every day, you are unique to to the medical field, and it’s you who will keep everyone on edge for the next two hours. You are no longer rare, you are literally a spectacle, a performance of medical fascination that is mixed with a nervous anticipation, and an uncertainty that can only be eased with time… and patience.

It’s a good thing I like to be centre stage 😉

image12

It may be intimidating for some to have 10-15 physicians watch as the radioactive solution enters into your blood stream, watching from behind a special radioactive barrier. (As shown above) in the room with me was… my radioactive solution dripping into my blood stream, my IV, my blood pressure machine timed perfectly to measure my vitals every 15 minutes, my  second IV for fluids, maybe some other gadgets… like my laptop, where I tried to watch saved by the bell and ignore the commotion of what was happening to me, but other than that I was completely isolated of course. If I didn’t have 10-15 of the best and caring physicians in the entire world watching over me through my radioactive shield, maybe I would have had a little more concern… but throughout the administration, I felt rather peaceful. I was okay with everything happening, and I love my nuclear medicine team, that kind of helps. I knew that if something were to suddenly go wrong, they’d come running, and I’d be in expert hands… so there’s that. The administration of the liquid was pretty uneventful, we all kind of thought I was going to implode or something, I was in pain and had to urinate REALLY quite badly… but other than that, it went rather well. I showed up at the hospital for 8:30 – treatment was late being administered around 3:30 and finished around 5:30pm on the 20th of January.

Part 1 – Success ! 

Easy – what were we worried about? This is nothin’. Can I go home now? Since all the fun is over, everyone is leaving, bye bye doctors! I’m fine, I feel great, that was fun, maybe we can do it again sometime soon.

Okay, perhaps I spoke too soon. It only took half an hour and I was starting to feel unwell,  I had felt worse pheochromocytoma adrenaline attacks in my day… so I said to myself, okay, if this is the worst of it… it’s not THAT bad! I can deal with chest pain, tightness, heart palpitations, and uncontrollable shaking… this isn’t TOO bad. Suck it up Miranda. It means the tumours are getting the treatment, they don’t like it, but that’s a good sign…

10:00pm – fairly certain I’m not being over dramatic when I say this is going to be farewell, everything is happening, I can’t do this, I’ve never had this many symptoms hit me at once, my body can’t sustain this type of attack… for this long… this can’t be happening, someone help me …

Isolation…

That first night of radiation … was one of the worst nights of my life.

I’ve had to endure a lot of pain, uncertainty, and physical trauma with this disease… but that night… it really had to be in the top three. I won’t give it a definitive placing because my surgeries for this disease, well, they were PRETTY brutal, so I’ll leave it as a ‘top’ placement. When you go from feeling a certain type of ‘normal’, going into treatment I didn’t feel perfect, but it was my norm, so I went from feeling ‘normal’ to all of a sudden being hit with EVERY single symptom I’ve ever felt in my life associated with this disease… all at ONE TIME. By 10 o’clock I was full blown being physically assassinated, and it was NOT pretty.

My blood pressure jumped up making me feel super unwell, my chest was tight and physically hurt, my heart hurt, it was pounding in my ears and I could feel my still fresh jugular wound pounding out of my neck from my heart rate, my neck glands were swollen and creating more pressure in my head, my headache felt as if my skull was actually growing inside of my head… my eyes felt like they were going to pop out of their sockets, all I could taste was metal, and blood, from my gums bleeding suddenly, (yes, when things start bleeding out of no where on your body, it’s incredibly alarming) then the nausea… oh dear the nausea, game over. Just kidding, who just kicked me in the back? No one, that’s just my bones, oh, all of them feel like that now, amazing. And…. now I am completely drenched in sweat, and can’t stop sweating, and won’t stop sweating, it’ll never stop. I also can’t stop peeing.

I know this seems like an insignificant detail, but when you’re in this much distress, and your bed is high, and your hooked up to EVERYTHING, and you must unhook yourself from said machines EACH time you have to go to the bathroom, and then re-hook yourself up to EACH machine properly once you make it back into your giant bed by yourself… it’s literally a process, and a debacle, and it makes you want to cry with frustration each time. Now not only do you have to do all of this when you’re not thinking straight, not walking well, you’re dizzy, and confused, and you’re fairly certain your body is going to explode at any second, every time you unplug your IV, it beeps at you constantly, and won’t stop, and your poor night nurse has to come in and expose herself to your radioactive room and self to come fix it, and this happens over ten times… and each time takes time to fix, so the beeping alone is enough to drive you out of your mind. These details, I swear… they are everything when you are completely alone, when you have nothing else to focus on – when you have nothing but a silent room, your pain and suffering, and a loud beeping assaulting you and your already unfortunate circumstances.

Night one, you know exactly where you can go.

In the meantime, would you like to see my beautiful isolation suite I had? It really was quite nice, minus the tumours imploding part and feeling the worst ever.

My million dollar view
My magic bed
The big lead door

Over the course of the next few days in my lead isolation room behind my special radiation screen I showed you above, everything I described to you above repeated every day, just not with the same severity as it did that first night. Nothing could ever hit me as hard as it did that first night, but it was close. Every day was awful, and is still is as I am writing this. However, since I am incredibly obsessive compulsive when it comes to keeping everyone up to date and also sharing my journey for the sake of awareness, I don’t like falling behind too far. So with my little burst of insomnia energy, I am laying my soul out for the world to read once again.

I thought waking up each day I would feel a little better, but it was just an exact replica of the day before, sometimes worse than the day before, which I had not anticipated… I thought things got better as time went on, but it seemed the opposite for this treatment. I guess it takes a bit of time to settle into your cells, and once it does, the more havoc it causes in your system. Having radioactive isotopes injected directly into your body is completely different then any other ways, it becomes apart of you. YOU are completely radioactive, which is why I had to be in such an isolation setup, in fact I still am… even though I am at home I still am following strict protocol to be sleeping alone, not within a certain amount of feet of people, I still cannot kiss or touch Serge, there’s so many restrictions still, and will be for a little while. It’s crazy how potent it is.

I am grateful that my incredibly persuasive husband found a way to see me in my isolation suite, even if it was through the special protective glass. Had it not been for him… I don’t know what I would have done. He was able to come in and stay a certain amount of feet away from me after a certain amount of days, and bring me foods that I could actually not want to vomit looking at, so that was a welcome change. Just seeing him was enough to make me want to get better enough to go home, I wanted to be better, to look better, to feel better, for his sake. I am grateful that we have so many people incredibly supportive people behind us throughout the hardest times of our lives, we can’t thank each and every one of you enough times for the outpouring of love and prayer and support we receive when we need it most. I am grateful that although I am fighting this disease with all I have, and it is rare and awful and relentless… I have a medical team who doesn’t give up on me and is matches my effort and is unique to the medical world, they are superior and I am so thankful.

I do not feel it is appropriate at this stage to have any ‘expectations’ so far, as it is a complicated disease and even with positive results… it is impossible to know how long that can last, and with negative results, we can try again. So I will reserve my opinion on my expectations for now, and just wait for once. I will be going for an MIBG scan soon, to have my whole body scanned and see how the treatment did. I will reserve hope and pray that I can find some relief eventually, so that I can enjoy some precious moments… because that’s what life is all about.

I really base everything off of how I feel, right now I feel awful. I am told I will feel this way for a number of months because of my pheochromocytoma cancer and adrenal insufficiency combination, and of course my pain level that just… is part of me. There’s elements that can’t go away no matter what we do, but there’s hope that we can make me a lot more comfortable, and that’s really the main goal, that’s my expectation, is that I can just be a little more comfortable, and perhaps enjoy a little relief here and there… a vacation perhaps? 🙂 OMG, a girl can dream… this girl needs some serious R&R

We are completely exhausted. I am depleted, hurt, scared, I have zero energy, nauseous, I am still radioactive, I can hardly have the energy to shower, I still have daily adrenaline attacks, I sleep all the time.  We are having to keep an eye out for infections and horrible things that will make me have to go back into the hospital, I am overwhelmed with the amount of new symptoms on top of the old, and I am being honest when I say there is nothing fabulous to report this time around just yet.

The only Fab around here is all of the love I have received… and I am giving it back in the form of honesty, and updating you all so that you can know what’s happening to me and know you are in my heart, and what’s keeping me going.

Follow me to find out what happens next

Pheo VS Fabulous ❤

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Soooooo tired, goodnight loves.

Perfect days…

Posted in adrenal insufficiency, cancer, cancer fabulous, Chronic illness, Cortisol, inspirational, net cancer, pheo mets, pheochromocytoma, positivity, Radiation, rare disease, surviving cancer, young cancer by

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 friends 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! 😁🎄🎅🏻

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 😂 – 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 😄

Christmas Baking Day:

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 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 ❤️