The Choice

“Should I do this treatment?”

Read this first:

https://pheovsfabulous.wordpress.com/radioactive-therapy-mibg-overview/

And then read…

Source: The Choice

After

A few days ago I made a promise that I would compile all of the last few months worth of information regarding MIBG Therapy – and put it into one informative place.

I said I would reveal more details about the aftermath, as I had about the before, and spared no details during the procedure. It took me a little while, as it’s been quite hard to get to this point as some of you know… and only now have we just started to receive some information regarding the results. You can read all about it in the overview & more.

I am hopeful this will provide you with an understanding of what goes into to this type of treatment, before, during and after. To get a better look at how hard everyone works, in an effort to keep me alive.

With so little information about metastatic pheochromocytoma available, and even less about the treatment options, etc… I will continue to help fill that space for those of us who need it most, the patients.

I hope you will have questions answered that only someone like me who has experienced it could answer for you. I am hopeful for those of you preparing for this treatment, I wish you the very best in your own personal journeys…

Permanently available in the ‘Menu’ – Radioactive Therapy – MIBG (Overview)

Now Available

🙂


Remember… it can’t take away your ‘fabulous’ 

Pheo VS Fabulous ❤

After…

I plan on gathering up the last three months worth of post MIBG experience and putting it into one place, and sharing it soon – kind of an ‘after’. As I did a quite detailed ‘before’ documentation, it’s time I give the same respect for the aftermath. I have of course shed some light in the early days after treatment…which went over the process of the actual treatment – but since then I have been feeling quite awful and haven’t been comfortable forming an overall view just yet. For example when I wrote this post here, it had only been 22 days post treatment and I was REALLY not feeling well 😂! I am happy to say I am at least better than that…! I no longer taste batteries and don’t have a violent undertone anymore.

I am still no closer in knowing what kind of impact the treatment made just yet, as it’s a long process (another thing that one may not know when entering into this journey).

*It’s important to note that when reading someone else’s experience with this disease, there are several things to take into account and everyone’s experience will be very different. For example: progression of disease, active or inactive tumors, location, other health complications* 

I personally couldn’t believe how much more difficulties I was suffering just while PREPARING for MIBG in comparison to others, but factoring in my other health issues, and how active my tumors are, looking back this isn’t such a shock to me anymore. You just can’t compare. So although I share my experiences here, many of you will find that your experience will be night and day compared to mine, just as I did. Hopefully you will find that yours is much easier than mine though lol 😄💛

One thing we all have in common…

Everyone who has this disease will face the same unknowns, many of us will ask similar questions, and I now have an opportunity to answer a little more of them. 

The last three months I’ll be honest, it’s been much harder than we anticipated. I keep waiting to update because I keep waiting for some significant change in how I feel, whereas sometimes I just feel worse. It’s a tricky disease, much like before the treatment, it’s still day to day. MIBG is not a magic potion, however we saw it as a necessary step, a natural progression in my treatment plan, and I am hoping it’s still early to really tell. It is what it is, this is my personal experience, I still feel quite awful, and I can’t only share the feel good moments. Of course we were hoping for a different outcome, I haven’t even gotten any results yet in the form of a scan or biochemical results – but I base things off of how I feel, and well, it’s not feeling good as of yet. HOWEVER, I must say… Had I not done MIBG, I would probably be much worse!!! Considering how badly my disease was progressing and how active my tumors were, I think it’s safe to say that it atleast did it’s job to calm down the progression a tiny bit. I am so lucky to have the best team of doctors treating me this time around, we are just so thankful for the things we can be grateful for. So there’s positives and negatives, I am always hopeful and looking for that positive! 🌸

So with that … I will now begin to have new tests and new information coming in within the next couple of months. I thought before I get too overwhelmed now would be a good time to mark my experience so far, for those of you who are going to experience radioactive therapies, you can have an idea of the prep, during, and an overall view that comes with it after 3 months of quite a bumpy road. Check out my pages for more information on the before and during.

May 21st will mark the one year anniversary of my massive surgery  to debulk as much of my cancer as they could, it’s incredible to think of what my body has went through in the last year’s time. It is constantly planning the next step and preparing for the next course of action, and trying to stay alive while it’s all taking place. Never a dull moment for us, that’s for sure.

Stay tuned… Writing takes a lot out of me, and with constant brain fog it takes a lot to actually formulate my thoughts nowadays. So be on the lookout for my POST MIBG … Whatever I will call it review 💀⛔️

More to come… ✌🏼️💖

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It’s been a while ..

It’s been a little while hasn’t it? A couple of weeks atleast, I thought I should drop in and reassure everyone of my existence.

It’s my 2 month radiotheranniversary … Woo .. Ha 😂 I’m still here

Okay so last time I spoke to you, everything was quite awful. My tumors were acting quite vicious, my symptoms were at an all time high, the MIBG radiation was making everything very problematic. Well, although I’m still in the same boat, it’s not quite as severe basically. I haven’t been updating quite as often because it’s still quite difficult for me as I don’t feel very well, and everything is very exhausting. However …decreased severity of symptoms is really great news so, that’s something guys.

Right now I’m on my way to my favorite super hospital in Montreal to get some important testing done, and despite the pain, nausea, and adrenaline the enemy likes to cause… I found my inner fab 😘❤️

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Time Limit…

Those of us with terminal cancer have the unremarkable pleasure of figuring out how to live while we are dying; yet lately, I’ve had to put all of my focus into figuring out how to not feel as though I am dying while living.

Since I was diagnosed with metastatic pheochromocytoma a little over a year ago, there have been very few times I’ve felt out of control. Despite the grim future, the poor prognosis, the “palliative” care options, the complicated nature of the disease, I have kept myself distracted by always having a plan. I felt that if I kept ahead of everything, and stayed engrossed in the process, I wouldn’t feel victimized by the illness. I also wouldn’t be able to stop and slow down and really “feel” much of anything. I chose the path of resistance, I thought that by doing this, I would somehow be able to fight this disease.

We don’t ‘fight’ cancer, we live with cancer.

We fight for our lives, we fight to be able to smile, we fight to choke back the tears that threaten to come pouring out at any moment, we fight for the ability to wake up and maintain the impossible level of positivity we possessed when we started.

We fight for the ability to not scream when someone asks us if we are okay, how we are doing, and not break down in that moment because we are unsure whether to answer the way we think we should or just answer honestly.

We fight for the patience to explain ourselves over and over and over again to people when they ask what we have, because our disease is so complex, and so rare, one cannot begin to comprehend we cannot simply answer by saying _______ cancer… because it’s far too complicated, and it deserves awareness, we deserve awareness.

We fight for the strength to continue to cope with everything we are facing so that we can muster up the strength to continue to ‘live with’ whatever you want to call this, cancer.

In the beginning of my diagnosis, I still felt closer to my regular self. I could fake it a little more, it was easier to play the part of ‘normal’, and I could even take part in my own denial. There is always a multi level plan when it comes to cancer, mine went something like this: first we do surgery to remove as much cancer and infected organs possible, then we will do MIBG radioactive therapy to try and kill some of the cancer we cannot remove during surgery, and then later down the line when that is no longer an option and there’s nothing left that we can do, we essentially do chemotherapy and then typically people die. Now mind you every case is individual, that’s why the textbook 1-5 year prognosis is debatable. Some people can live longer, depending on their condition.

See, for the last year and a little while… I’ve had something to say “okay, this is next”, except now that the ‘multi level plan’ is dwindling away, I am feeling a bit like… okay, “what now?”

The fact of the matter is, there has to come a time when I have to start accepting the nature of my illness. I think that I have finally started to ‘feel’ the gravity of my situation vs trying to manage, plan, and control. Over a year has flew by, I’ve already had surgery, I’ve already done MIBG, and of course without these, I’d be dead by now, but that doesn’t mean I feel any better. In fact, my quality of life has gotten significantly worse. I feel very grateful that I am alive, but I still wish the life I have left could be spent living.

That’s the problem with cancer, every single step designed to treat you… will ultimately feel like it’s harming you in ten ways to help you in just one.

Living with death hanging over me constantly, while still trying to smile and stay positive is incredibly difficult. So far I have managed to do so by remaining in the moment, focusing on what’s happening right now. Although I will always hang on to my positivity, because it’s who I am, I would be lying if I didn’t tell you that this is becoming more and more difficult for me.

When you are given a time limit, you think… I’m going to do all of these amazing, incredible things. I will see the world, I will fulfill my wildest dreams, I will check off all of the things on my bucket list. Well what if you had a time limit, and you weren’t even able to do the simplest of things, how can I possibly fulfill my wildest dreams if I cannot even take a shower or climb a fight of stairs in my own home? I don’t want to ever utter those words, it’s not fair, but it’s not fair. You picture yourself being able to at least do what you wish with the time you have left, should you be in this situation, but often it’s so far from that movie-like fantasy. Forget my wildest dreams, at this point… I crave normal, I yearn for normalcy. I just wish for the remainder of my time to be spent with the ability to be normal, to carry out normal tasks, to be able to contribute and feel a sense of pride and accomplishment again.

I resent the fact that I am finally at the stage where I feel discomfort when someone speaks about something in the future, I feel a twinge of uncertainty suddenly. I just want to enjoy the time that I have, but I don’t know how to do that while I am so ill and in pain. I want relief, I have been enduring more and more pain in search of relief… only to find more pain.

All I can think about lately is a special Miranda friendly dream home tucked away in the woods, designed for peace and serenity… with NO STAIRS!, surrounded by nothing but the sound of nature, a porch with a nice cozy chair that I can sip hot tea and just sit and relax… that way if I continue to be able to do nothing, at least nothing could be stress free and fabulous…

Pheo VS Fabulous

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It can only get better…

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

There’s always a reason to smile

With so many awful things to worry about, feel, and experience… Cancer gives you two options: succumb to it’s misery and pain, and let yourself be one with it physically and mentally, or… Allow yourself to feel the inevitable pain and misery, be honest about the trials it imposes upon your life, and still find a reason to smile every single day… because let’s put this differently, with so many awful things to worry about, why NOT smile?

If you are still able to see the beauty amongst all that pain, that is a smile worth having.

It’s been 16 days since I did MIBG radioactive therapy (read link here) – It is definitely still an imposition, and I certainly can go on and on about my struggles, but instead I’m just going to focus on today – with no expectations, and just keep smiling my way through it for now.

Today I will get a look at how my body is performing after my high dose of MIBG radioactive therapy, and make sure I’m not in any imminent danger, we like knowing I’m safe and sound and my tumors aren’t going to do anything sneaky. You never know… Since the surprise attack we initiated on them, they can be very vindictive.

So happy world cancer day my friends ✌🏼️💜

Smile & Stay Fab

pheo VS fabulous 💖

#mirandastrong

#pheovsfabulous

Instagram: @mirandasimard

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Remedy for the Rare – MIBG

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!)

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 😉

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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.

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 ❤

instagram: @mirandasimard

#pheovsfabulous

Soooooo tired, goodnight loves.

MIBG Therapy – it’s here

Therapy, treatment, normally implies some sort of relief right? Well let’s hope so, because I don’t think it sounds very therapeutic, but what do I know… 😂

Today is the day!

Its 6:41am and I’m about to go have a fight with the shower, be assaulted by my tumors for a good hour, and then once all at calms down… Think about leaving for the hospital for admissions, yesssss honey! It’s a glamarous life 😜

‘Mibg’ radioactive therapy should start to be administered around noon.. I have no idea what to expect… We are anticipating my body to not cooperating during the injection, it’s just a fact that the tumors are going to uptake the radioactive isotopes, and they’re going to essentially explode their adrenaline, leavin me littered with the aftermath, this is the part where they have to be extremely careful to balance with medications to protect my heart and so on! Yikes 😬

I got the greatest gift of all yesterday, because of the kindness and generosity of so many … Serge is able to stay 10 minutes away while these complications arise, being right there, VS being 3.5 hours away.. He is literally my husband and yet my caregiver, and it’s hard enough being isolated during this whole event, and several days after, knowing he is there if something goes wrong… is the best gift anyone could have given me.

gofundme.com/a7k4rbek

Yesterday was one of the most difficult days of my life, but my heart was full of warmth and happiness because of every single one of you reaching out to me… Today you will be with me in my heart 💖 Getting me through each step, until I can update again! We love you all so very much, merci and thank you for your continued support in my journey 🏩

I must be off for now, tata my loves!

See you after I’m radioactive and a little less pleasant … 😈💖

Pheo VS Fabulous

And so it begins..

It’s here, that inevitable day has come.. The one I leave my warm comfortable bed at home once again, and will travel to my ‘super hospital’ in Montreal, and receive MIBG radiotherapy…

Tomorrow the actual process starts, but of course we have to leave a day in advance in order to be there, get admitted, be ready in the morning and make sure my body doesn’t have to endure TOO much stress and travel time before the actual procedure – as it’ll be dangerous enough to administer the treatment… Eeeeek! Okay. Getting a little nervous, understandably, when I did my surgery… It was basically – that was my only option for a real chance, when I still woke up with the unfortunate news that there was disease left in me and of course that disease had multiplied within just months …. You can understand  our thoughts when it comes to this. I’m a  realist, I know there’s no cure to this disease, but it would be REALLY lovely to not have these tumors adrenaline attack me every couple hours… And feel like I’m in a war zone with my own body, and waiting to die every minute of the day. I’m not asking for a lot, just a bit of relief, a little less pain, a little less symptoms, some better quality of life.. That way I can focus on being a little more fab for a while, help some others along my way, and perhaps take a small break from this constant battle? Here’s to hoping.

We must get through the hard part first, administering the treatment which will wake up all of the tumors… Sending all of the adrenaline into my body at once, while I’m awake, (amazing) being incredibly sick, potentially wiping out my bone marrow, monitoring my adrenal insuffiency as I’m going to always be going into adrenal crisis with the stress my body will endure, being locked away in isolation as I will be radioactive until further notice, and then hopefully… With time and lots of positive energy, we will hope I will come out free of a few friends, and a little more fabulous 😉💗

you can read about the special treatment Here

what I had to do to prepare 😖 Here

Pheo VS Fabulous

#mirandastrong

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Day 1 – bone marrow collection

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

First I’m going to get some bloods…

Second im going to get a big garden hose inserted into my tiny neck… AHHHHHHHHHHHHHH

Then I will go get my garden hose attached to the machine where I will be hooked up for 6 hours atleast that will steal all my of my bone marrow stem cells, while I watch I love Lucy and sleep and talk to all of you.

At the end of the day I will see how I did and then repeat all over again, except I go back to the hotel with the garden hose still in my neck (ew ew ew) lol. It’s a big IV BY THE WAY…

My goodness, ok I’ll update more later – I just had to let everyone know it’s STARTING ….!!!!!

XOX

Pheo VS Fabulous 💗

Pain pain go away…

Bone marrow injections 💉

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

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

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

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

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

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

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

Thats my update for now, pain 😂😁

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

(I knew I would sneak fab into there somewhere)

💗💗💗

Pheo VS Fabulous

Gross!

GROSS 

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

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

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

Well, my husband sang the miss America song as I walked down the stairs… I guess there really is more I could ask for 💁🏻💏

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

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

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

Enjoy your day, be good to your bones, eat your vegetables, and do something kind 💗✌🏼️

Pheo VS Fabulous