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

Staying Alive…

It seems like a fairly straight forward thing to do, right? You have one job, keep yourself alive on a daily basis. This isn’t meant to be sardonic, but it seems this job is not so straight forward, and it’s been quite exhausting lately.

Monday

If you remember my last post, it started as a pretty normal trip, hospital chic and all that jazz? I had to prepare for a very last minute CT scan, I had been experiencing some incredibly intense pain – more so than my ‘normal’ already incredibly high pain level, all within the region of my right rib/diaphragm/abdomen. Seeing-as though I am going in for high dose MIBG radioactive therapy for my pheochromocytoma cancer in just a few days, and a bone marrow transplant to prepare for this therapy before that… we thought it might be wise to rule out any major complications. So off to the CT I go, one problem: I’m allergic to the iodine needed to light up your insides to find the problem, (I promise I AM this complicated always)

Preparation for someone with an iodine allergy: High doses of the steroid prednisone, and Benadryl all within 12 hours of the injection. Simple, yes?

                                               Okay, maybe there’s a HINT of bitterness in here…

Okay, steroids.

I am no stranger to steroids, if you follow me regularly you also know by now that my pheochromocytoma cancer has killed my body’s natural ability to produce cortisol – (without it we die). I have no more working adrenal glands, so I have to take steroids to live every day, this means I am ‘adrenal insufficient’. Still following me? Read more here.

 So there’s a few problems here.. Basically, since my pheochromocytoma tumours are actively producing catecholamines into my body – (adrenaline) which are the most powerful hormones your body can produce, I’m constantly at risk for heart attack, stroke, kidney failure, and death. That’s the first of our problem… Second, the adrenal insufficiency puts me at risk for being too LOW on cortisol, our stress hormone, and since I cannot naturally produce this hormone.. this is why I take steroids every day. The problem is, I have no way of knowing if I take enough. Things that drain my stress hormone? Pain, STRESS, sickness, emotional stress, medical procedures, excitement, etc… you see how complicated this is? I am literally a walking contradiction, my disease causes me to overdose on one type of hormone that can kill me at any second, which actually depletes my cortisol levels due to my inability to produce cortisol… so THAT triggers what’s called an ‘adrenal crisis’, also leading to death, if not caught and treated in time. Both however, in either cases, can be unpredictable and extremely dangerous for the average person, my situation just further complicates it because they’re constantly conflicting with one another and I feel as though I am a walking grenade… just waiting to blow at anytime, while doing almost nothing at all, such as going for an innocent CT scan… put me in both crisis modes.

A combination of sorts, not one particular blame or reason can necessarily be pinpointed in these situations.. basically taking the high dose of prednisone which was essential for my allergy, triggers my pheo tumours – activating one crisis mode, depleting the cortisol, activating another crisis mode, domino effect. It’s much more complicated than that, but I’ll spare you some details as this is a much more technical post, so … I go for my scan, I’d been fasting, taking high doses of steroids, allergy medication, in a lot of pain, and travelling (all of which definitely make my tumours angry and eat my cortisol levels) after I had finished a long day at the hospital for all of the tests, we checked into to the hotel – our plan: take a lovely nap, wake up, order room service, have a relaxing evening, get some more rest until morning, at which point we would return and see my ‘pheo doctor’ and discuss the findings of my CT, blood, and figure out the mystery pain.

                                                                                                                          So much pain…

 When I woke up from my nap, I noticed on my trusty little fitbit HR monitor that my heart rate had been quite high for…well, the whole day. Normally it goes down a little bit, I get a tiny break here and there, not today. Oh, did I mention the fact that my brain felt like I was wearing a helmet that had been hammered onto my head? No, I can only focus on the pain in my chest, or wait, back to the beating heart… WHY ARE YOU POUNDING SO HARD.. STOP THAT, I’VE BEEN SLEEPING, NOT RUNNING A MARATHON. Okay, it’s okay, just a pheo attack, I have these all the time, it’ll go away.. Ow, what’s this now? My whole body hurts, my joints are being ripped apart, this only happens when… when my cortisol is low, hm, this is weird, is this a pheo attack or an adrenal crisis?! This is a fun game, guess the symptoms. Now I’m sweating, well that does’t narrow it down, that happens both times. Oh wow, definitely going to vomit, so much nausea..Okay, I’m confused, literally, I’m confused.. I can’t think straight, am I talking? I feel like I am, am I making sense? Brain fog. Check, ok, this is bad. If this goes on any longer, I’m going to be unable to communicate at all, because I’ll be unconscious, and I’m useless that way – is it weird all I could think about was the fact that I really wanted my steak dinner? My next thought: No hospital, god no.. the hospital, how will I explain this, it’s not as if I have a straight forward illness, this is a lot to explain, and it’s not a very easy process, time is everything. I don’t want to go, that sounds weird, not wanting to go to a hospital when you’re ill, but having to explain your disease to multiple people when you’re experiencing this … and when someone has no idea what you’re talking about, it’s torture, every second counts, and it’s just a painful and cruel reality on top of what we already have to endure as zebras (the rare diagnosis). I just want to make it until morning, to see my specialist, I have to make it until morning… please, don’t make me go, they will keep me, and I already have to be admitted in less than a week for multiple procedures/treatments that I’m terrified for, let me have these last few days, please god..

How can I fight one of the most lethal cancers every day, and have to worry about death by some random adrenal crisis brought on by a routine test?! I refuse to accept this, ok, THINK CLEARLY…

                                               Don’t be helpless when it comes to helping yourself…

In times like these, I don’t have the brain capacity to make decisions, nor do I have the ability to confidently decide what’s wrong with me. I do know my body, I know my disease in and out, I have to, but this state affects your mind’s ability to think, to react, and to communicate. This leaves you powerless, and out of control completely. Enter: my superhero husband and my very close friend who also happens to be plagued with the same disease and lives miles and miles away from me. The two of them connected and worked like batman and robin, or superman and wonder woman, or whoever you happen to like in the superhero world. Serge physically prevented me from going into a full blown stage 2 adrenal crisis, which means he kept me from going completely unconscious, and properly followed protocol in order to rebuild my body’s levels back up to an appropriate functioning level, in order to make it to the next day by ‘stress dosing’ on steroids. He obviously didn’t just take my word for it and say “Okay, I won’t take you to the hospital my beautiful belligerent wife, LOL” our car was valet ready, my injection was on the bed, ready to be administered and hotel was ready to call an ambulance if needed … just an FYI to everyone sitting there wondering (wtf) is wrong with these people.. Once out of immediate danger, he also called the ER endocrinologist, explained the situation, and thankfully.. we did everything right to save my life. Not to my surprise, this took a lot of explaining, a lot of time, a lot of confusion, and a lesson from me in my disease.. but we eventually got to an understanding. (Following me on the don’t be helpless?) It is IMPERATIVE to understand how to help yourself in any situation, especially when it comes to a rare illness, and you have got to be prepared! This is YOUR life!

This all happened on Monday, we are now creeping into Thursday… I am still completely drained, and having to maintain a steady high dose of steroids in order to regain my strength and compensate for all of the exertion my body has had to fight for. For those of you wondering about the results of my CT; it seems so far that my pain is being caused by damage to my liver/lung area, a build up of scar tissue.. impeding on my nerves. So, really… another pain source that cannot be fixed, but I choose to look at this as a positive, since it was first determined as a possible surgical issue… and when we were sitting in that office after everything that happened Monday night, and my surgical team was being called… oh god, I cannot even. I will take the everlasting pain over being opened up again, or having something that needs to be aspirated, removed, touched in anyway. So as for now, that’s what it seems to be! That being said, Friday is the big day, we will travel back to start the injections to start stimulating my bone marrow growth, that will carry on for three days, and Monday.. well, the collection process will begin. GOODNESS GRACIOUS – packing alone could put me in adrenal crisis, the decisions… what will my radioactive therapy fashion attire be?!?!! (kidding, kinda)

You never think that going in for a routine scan may be the last time you sleep in your own bed together… the irony of it, having one procedure done to safely have another, and end up in crisis. I speak a lot about the serious nature of my illness, creating awareness for others suffering with this rare disease, advocating for yourself, helping yourself when no one else will… and here I am, not even truly realizing sometimes the delicateness of my own life. No one can actually know the haunting feeling of coming near death, and once you become accustom to it, you don’t know whether to feel lucky, blessed, or just plain fear. I feel all of the above, despite that ‘fear’, I still feel an incredible gratefulness, an overwhelming responsibility to educate and make a difference for others in my situation, and most of all – I feel that my ‘fabulous’ is still alive and strong and I will continue to share my journey despite these … shall we say, hiccups?

 Conquering this disease is never going to be easy, but hopefully one day it won’t have to be this hard… 

Phew VS Fabulous 💗

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Hospital Chic 💖

Is there such a thing?! I’m starting my new year with … you guessed it, a little hospital get away! 😉 I’ve decided my attire for my day of tests is going to be ‘hospital chic’, what do you think?!

Whoever said you can’t be fabulous on 2 hours of sleep, a 5:30am awakening, full of steroids and Benadryl, a 3.5 hour car drive, no eating and drinking, inevitable pain, and a day ahead full of tests… CLEARLY has not met me.

Can we just talk about the cruel fact that I am severely allergic to contrast iodine needed to do imaging …? Like having a rare cancer you need to do imaging with contrast all the time, and I’m allergic. COME ON! So steroid and Benadryl blast it is 💊💊💊

These next couple days will hopefully help us figure out my mystery worsening pain, and then I can enter into my bone marrow transplant, and MIBG radiotherapy.. Comfortably knowing there isn’t ANOTHER oddity to add onto the list 😜

Cross your fingers, pray, wish on a star, just think of me and let them be good thoughts please and thank you 😘

IT’S A PLAN!

Goodness, long day ahead…! Updates will come, of course 💗

Yours truly,

Pheo VS Fabulous

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And so it begins…

Well that was a nice little break, we had a couple of weeks it seems where we weren’t going to the hospital QUITE as often… and it was lovely! I only had a few bad episodes, less hospital visits, minor testing, and I would say that in the world of metastatic pheochromocytoma, this would be a success 💃🏻

For those of you who are just beginning to read, I discussed my most recent results here. I mentioned that with the special radiation that is designed to treat this type of cancer/tumor, they’ve recommended as a precaution that I donate bone marrow in advance to be extra careful … So that’s what I’ll be discussing today! I’m quite happy to be meeting with the hematologist, if there’s one thing you’ve learned about me so far, it’s that I’m very impatient, and I deal well with facts, I’m not good with the unknown phases. As horrible as some information may be to receive, it’s even more awful thinking about it in a hypothetical sense, I’m a lay it on me type person! So, now that I’ve gone over every horrid possibility of what they may do to this fabulous but broken body of mine, I’m ready to receive the actual facts 😂

This will be step one of many to prepare for this high dose MIBG radiation therapy in January, oh so soon…!

My little tumor grenades have been quite aggressive lately, putting out a lot of adrenaline, making it quite difficult to live – it will be quite nice to blast them with some radioactive iodine, put them in their place and all that sort of thing.

I never said I would fight fair 😉

So step 1: see hematology, see my favorite pheo cancer doctor is step 2 today, and then… Do the long drive back, and update all of you with the gory details later 💛👏🏼

Deal?

Pheo VS Fabulous

✌🏼️

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