PHEO vs Fab…

It takes hours of pain and struggle to achieve ‘beauty’ at the beginning of my day –

It takes just seconds and not even the slightest struggle for my body to achieve unimaginable ‘pain’ at the end.

This is living with pheochromocytoma cancer.

This is how quick it is – seconds, minutes…. Bright, cheery, and ready to take on the world doesn’t matter when you’re hit with searing pain and an overdose of adrenaline hormones. Your body assaulted so all it knows how to do is scream, cry, or vomit in defense. How quickly things can change. Every day.                            From that ‘normal’ woman full of life with the big sparkly smile to the woman who can’t move in her bed, with dark eyes, tears of pain, sweat, and a constant reminder that no matter how positive she is – pheo doesn’t care. 

I allow for what I want people to see, but it’s important to know that although I often choose to share only one perception, there is another.

I choose to share the bright smiles, and focus on the good. This is often just a small part of my day, despite me wanting it to be all the time – it’s out of my control.

Unfortunately the ‘other’ side far outweighs the one I choose to share, which is why I choose to shine a light on the brighter side of things, perhaps because it’s the one that needs a bit more love and attention in order to stay bright and stay as I like to call it – “fab”.

As much as I wish sometimes people would understand or really “get it”, I know that it’s really just an impossible situation to get. You simply cannot be within someone else’s body and feel their exact amount pain. I find myself pleased when someone doesn’t get it, why would I even want them to?

It’s easy for us to SAY “5 times in 12 days we have spent in the hospital completing tests and procedures, each time approximately a 12 hour day (actually feeling grateful if we made it back under the 12 hour mark)”

Of course I won’t tell you about the fact that I only got 1.5-2 hours sleep the night before, either because we had to get up so early or simply because my brain wouldn’t allow me to sleep. Having to think about yet another disappointing test result, or even worse, my cancer spreading to new parts of my body and becoming completely out of control and suddenly being the textbook statistic I was told about when diagnosed.

I won’t tell you too much about how when I do wake up I have to take a special medication immediately for cancer patients made to prevent vomiting, if I haven’t already, from all of the extra adrenaline that surges through my body at it’s highest level (when you wake up).

I won’t share with you how while I’m trying to put my makeup on to help hide the puffiness the steroids cause (the ones I have to take daily to live) my hands are shaking like I’m experiencing an internal earthquake, and my heart feels like it’s pumping through cement.

I would rather not share that my Fitbit bracelet thinks that me sitting down doing my makeup, literally thinks that I am in a FULL ON marathon activity, and is measuring me for all sorts of neat high calorie exercises classifications because my heart is in the highest modes possible, doing nothing. By the time I’m done, according to my data, I’ve essentially ran, biked, and maybe even gone for a high speed swim.

I don’t mention the fact that my body passes out from constantly depleting its cortisol the entire way there, so now we have to continuously guess when I am in need of the aforementioned life saving steroids (so, pretend we are an adrenal gland).

I neglect to discuss the fact that certain tests are incredibly hard on me, physically and mentally. Hate needles? That’s only the beginning, I’m stabbed constantly. Hate being enclosed in tight spaces? No choice. There’s a lot to these procedures, having a rare disease like pheochromocytoma cancer there’s a lot of questions to answer, a ton of things to explain, on top of that having subsequent conditions such as adrenal insufficiency, allergies, etc, it’s quite complicated and stressful.

I don’t usually mention that some procedures can also evoke certain feelings and traumatic memories suddenly that I don’t wish to feel or remember, making it more difficult to get through the day when you’ve got so many more hours to go. Especially when you really haven’t had any positive news since you’ve been diagnosed – making it even more and more difficult to focus on the “bright” side sometimes.

I won’t tell you too much about how once I’m done I can hardly move, my body isn’t very nice to me on the best of days, but after laying in these hard machines unable to move for several minutes, I don’t know if painful is enough to describe it.

I wouldn’t normally share that on the way back home my body passes out yet again from the exhaustion, and the amount of pain it’s suffered through. I always think that once I am home, I am in the clear, we have done everything right – we have controlled all of the medications right, we have managed everything properly. I will be fine this time, I just need some rest. I always share how I am okay, and that I am going to be just fine and go to sleep.

What I don’t tell you is the moment I think I can just close my eyes, rest my body, and get sleep I need… I often experience hours more physical suffering into the night. Until I can get this under control, it doesn’t allow me to sleep, it doesn’t allow me to rest, I shut my eyes only to cry tears of absolute agony.

It takes seconds to go from perfectly ‘normal’ to what I’ve described at any given time several times a day. Regardless of tests, hospital appointments, procedures, or things that may further provoke and push my condition to an extreme, these are examples of what I don’t share when I share the most.

‘Normal’ days are no exception – these activities are just as hard, and have the same outcome. Taking a shower, climbing the stairs,  trying to go to the grocery store, visit a friend or family member, go for a walk down down my street, they all have the same result. I know I will suffer the consequences, so I must choose everything I do with care, and plan every move carefully.

That is a real depiction of my day with this disease, and it doesn’t ever stop reminding me.  I often focus on the ‘fabulous’, find the good, and try and empower others through my experience with this disease not just focusing on the obvious struggle. It’s important to talk about both sides, not just for me, but for everyone who’s living with this just as I am.

However, every now and again… I think it’s important to mention the pheo, since I think I’m pretty fabulous 🖐🏻

PHEO VS Fabulous 💛✨

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MRI round two

So we did the brain a couple days ago, time for the abdomen! I had a two day break, (woooo) 😉

My body and mind is exhausted, but I got up this morning at 5:30am and despite feeling like I was going to vomit, having tremors, my heart pounding non stop, and non stop pain – I decided I wanted to have glowing mermaid makeup to make me in a good mood.

Cause, how could it not?! ✨💄🐚☄

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My brain MRI was very….. interesting 😏 it’s similar today as far as the prep but it’s a different body part and different positioning in the machine. I’ll be having the contrast injection again so I have to be fasting (I cannot eat or drink liquids) since last night 👎🏻😑 for the brain I had to wear a contraption on my head to secure the picture they would get, and since the machine is literally SO SMALL and tightly enclosed – you have to close your eyes for the entire 35-40mins or you will basically feel like you’re being buried alive with ear plugs and things yelling at you really loud. (MRI noises)

So today it’s the same thing, except to visualize my stomach tumors – there’s one difference, I have to get an IV for the gado contrast, and ALSO this awful injection they always shoot me with directly in the muscle of my arm. It’s made to stop my intestines completely for the photo, for a half hour. (Weird, right⁉️)

They have to lay another contraption on top of my stomach, this is my least favorite part since my stomach is super sensitive where I can’t even touch it because of my surgeries and hypersensitivity neuropathic pain 😫, SOOOO yeah🖐🏻🖐🏻🖐🏻🆘🚫

Hopefully my body won’t do anything funny today, like pass out a bunch of times from (cortisol low) 💊💊💊  or make me suffer TOO much pain. I’ve already had a huge pain blast on the way here and had my share of pheo attacks just getting ready 😡 , that’s ENOUGH k?! 👇🏼 putting my finger down. Ha

So I have a very special gift I was able to bring with me today, it was hand made especially for me to symbolize a rare zebra butterfly, (as many of you know us pheo fighters are called zebras because we are rare!) and she perfectly designed it to be pink, sparkly, and FABULOUS! Just to make sure I would have something with me today for extra good vibes and sparkle ✌🏼️✨💗

Did I mention this amazing woman was a stranger to me 2 weeks ago? People’s kindness continues to surprise me, I am so grateful to be surrounded by such love and FAB! 💋

Well, it’s almost that time to go and get tortured (haha, kidding, kinda……..)

Pheo VS Fabulous 💗

So many images!

Now that my MIBG scan is over, thank goodness, I’m onto more conventional imaging now.

What are you doing on YOUR Saturday? I’m having my beautiful brains photographed, jealous?! 📸

That’s right, it’s MRI time!

Today will be my brain, because who doesn’t want to see inside this fabulous mind? 😉 Ha!

Tuesday will be back to the normal abdomen scan, to see the good old tumors we know and love, (wait, just kidding, we hate you!) multiple imaging types allows the medical team to compare each type of scan to one another and get different views of the tumors.

Example: MIBG relies on radioactive uptake in order to visualize the tumors, if my tumor cells do not absorb the radioactive iodine – there will not be a clear picture as to where my tumors are or where they have progressed.

MRI is a great scan for most people, but not all – not all pheochromocytomas clearly show up on conventional imaging such as MRI, or CT. Sometimes it’s done with contrast, sometimes it’s done without.

SO MANY OPTIONS!

So this is why we must do multiple types of scans, imaging types, and so on, in order to make sure we have a clear view of what we are working with – to see if there are any tumors hiding in spots we didn’t see before, spreading in other areas, and just maintaining a clear view so we can properly manage the disease with the best possible options.

After all… how can you control something if you’re not aware it’s there❔

So, a friendly reminder if you are a patient with metastatic disease: it is important to have a multi disciplinary team with a great endocrinologist who understands this complicated disease, and have everyone working at full throttle in order to help manage these little grenades. It is VERY quick to become out of control, we already don’t have a cure, so we need to do our best to work with ‘managing’ it, yes⁉️

I have been presenting with some pretty different symptoms in the past few weeks, so to be on the safe side – I must have my brain scanned to see if there’s anything in there 👀

Be on the lookout for part 2 of my MIBG scan breakdown, it was a particularly hard day for me and I have been too tired to post a proper detailed post to explain to my fellow pheo friends how an MIBG scan works, what to expect, etc 🤓

Alright, off to the scanner I go! ✌🏼️✨💋

Pheo VS Fabulous

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