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.
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…
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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Miranda, there are no words to describe how fabulous you truly are. I think of you constantly and send positive thiugts into the universe for you. Gd bless both you and Serge.
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It’s always so nice to see your name Kathy ☺️💗 … We appreciate your love and support so much, thank you xox
Miranda, I’m surprised you had the state of mind to write about your last four days. I’m glad Serge and your friend helped you through the crisis without the hospital. I don’t have a pheo and my body goes nuts before CT scans and operations. “Fight or Flight” kicks in and I feel like the woman in Edvard Munch’s “The Scream”. In the past, once in the hospital, are they able to IV your medicine to keep such episodes from happening? Thank you for sharing your harrowing first hand account in the life of a fabulous pheo patient. Radioaction acquire is no zippers, snaps, metal . . . Soft and fuzzy I’d say.
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Cathy, I’m sorry to hear that your body goes into crisis mode regardless of the procedure, I can’t imagine having any sort of anxiety on top of the symptoms you already suffer through – I have to say that I’m fairly calm when it comes to procedural type things .. The issue here is that – my adrenal insufficiency is (newer) – the last time I was prepped with high dose prednisone, I had one working adrenal gland to taper off the dose, so although my pheos definitely were aggravated as always – to be expected – I didn’t have the added complication of the adrenal insuffiency to worry about. This time it was adrenal crisis that sent me into the danger zone, the pheo just added to the disaster, I’m so well blocked with alpha and beta for my pheo, there wasn’t much more that could have been done with regard to that portion… It was more the fact that I needed a higher dose of steroids to taper off the prednisone, since my body can’t do it naturally. That and a combination of everything else, a recipe for disaster, and again – it couldn’t have really been predicted, living with AI & pheo is so unpredictable, I can go into crisis by just getting too excited, or my pain level going too high, as it eats up my cortisol content in my body, and if I don’t take enough pills to supply more, that’s when it goes into the low I described, and again … Activates the pheo more. However it was a lesson learned for the future, and we will be better prepared hopefully in any upcoming situations, very much a live and learn with these things. With the upcoming treatment – obviously there will have to be a pretty intense protocol in place for me… But I’ll be in the hospital for that so hopefully it’ll be smoother 😥
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Wow! I don’t have the words…. how scary. I can’t imagine the heart pounding feeling that won’t stop (I only get it occasionally) and the rest, just scary. I know you are doing what you have to do but you really are a ROCK STAR! I’m sending lots of positive vibes your way for your upcoming procedures and the radiation! Zap those bastards!
It really is something that we try and get used to it… But I think no matter how hard you try, you can’t get used to your heart beating out of control and trying to kill you 😂 I hope you never have to experience anything like this 💗 Thank you, I REALLY hope zapping the little buggers can bring me some temporary relief… Even just a little..!
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[…] Complications: my thyroid stopped working. More medication for life. But atleast I won’t keep suffering from all those weird unexplained symptoms, right? Wrong, my adrenal insufficiency would continuously be an issue with all of the stress on my body, I could never get enough cortisol. I was burning it too quickly, my body was too stressed from all of the prep, I hadn’t even done the treatment yet. […]