Living with metastatic pheochrocytoma

04/24/15

 This is probably the most difficult topic to articulate, it’s so much more than just physical suffering, it’s an emotional torment that is always lingering beneath the facade we put up.

It is also in my opinion the most beautiful display of overcoming adversity, it is that mind, body, and soul altering relationship you develop with yourself and those around you.

There are so many different feelings when it comes to living day-to-day with an all-consuming disease.

The unfortunate truth is that I feel I am still in the ‘honeymoon’ phase of my illness. Yes, I have overcome pheochromocytoma once, but you becoming so alarmingly aware of everything the second time around. You are a veteran, which puts you in a position where you can no longer rely on your naive innocence, this is the time where you have to get work. Research, input, you’re part of the team now – welcome to rare diseases 101. 

Meanwhile the honeymoon phase is not to be overlooked, there’s a huge emotional toll at this stage. All of the uncertainty and new information begins to flood in.

I look at snow and wonder if I will see it again, I want to cram everything I want to accomplish into a tiny window to make sure I don’t miss a thing, uncertain of my time line I am working with. Except I can’t very well just jet set off to paradise when some days I am on all fours just to climb the stairs which seem like mount Everest while I’m having an ‘attack’

(i.e.) – attacks are: an overdose of adrenaline that my tumors actually give off in my own body.

This causes very abrupt and without any notice
-forceful heart palpitations
-severe chest pain headache
(may cause stroke, heart attack)
-shaking
-sweating
-vomiting
-tremors
-flushing
-bone pain
-muscle pain
…instant chronic fatigue will follow as if your entire body has just run a marathon without you knowing it and then died and been brought back to life.

 And this will be set off by washing a dish, taking a shower, going to the bathroom, or doing nothing at all… 

Your life changes in an instant, one day you were planning your next holiday, you finally put your feet up and had confidence that your body would no longer betray you. Then you blink, and it’s all taken away.

Your busy work schedule gets replaced with a busy hospital schedule, your social life gets replaced by ‘social visits’… which eventually dwindle away as their lives move on. Your love life gets put on the back burner because one now assumes the role of care taker.

Pheochromocytoma is like any cancer, unforgiving.

It does not care about whether or not you took all the right treatments and medications to stabilize the symptoms, if it wants to.. it will still knock you on your ass, at any moment. Not to mention the medication you take to control the disease has its own army of side effects just waiting to push you right back down.

I find my solace even in the simplest moments, whether it’s just watching 10 seasons of grey’s anatomy on Netflix nonstop, or reading a great book, or typing to you guys on here about my honest truth on how I feel, I’ve dealt pretty well so far. No major break downs yet.

You have to find solitude in something, I find the most peace when I’m able to do a bit of cooking (if I should be so lucky that day). Sometimes I will push myself to every limit just to be able to create something beautiful, to free my mind for that hour it takes to compose a wonderful dish. What was once my favourite activity is now something that requires great effort and preparation, like everything in my life.

This all sounds very profound, but really I think it’s just getting through the day to day…finding anything to make you feel the least bit comfortable, to be able to cope with your circumstances, and find a little bit of joy in each day. Luckily I have my barbie room my husband made me a few years back to just sit and admire anything beautiful and pink, my personal joy and symbol of fabulous, no matter how awful I feel, I can ALWAYS find a little bit of cheer in there. Who doesn’t love make up and things that sparkle?

(I wrote this two years ago… my barbie room is on the upper level of my home, and I now have a bed on the downstairs floor due to the stairs setting off my attacks. I can no longer enjoy my barbie room as much as I would like to, which is why it’s so important to enjoy things while you can. Never take anything for granted, it’s just another example of how things quickly change in such little time.) 

Really the hardest part is constantly waiting for what’s to come, treatment after treatment. Procedure after procedure… There’s never been a break since I’ve been diagnosed, I don’t think I’ll ever know what it’s like again to be truly… free 

Which is why there comes a time you have to accept and embrace your fate, and just stay fabulous while doing it.

Update (click on update for more information about my surgery)- 10/15 – Once I actually had surgery, the amount of mets had been more than expected. Although the kidney was not removed which was excellent news, not all of the mets were able to be removed from the liver arteries, to be able to start from scratch and slow down growth completely, this just means the disease will be a bit harder to control now it was not able to be removed fully, unfortunately. 

Living with pheo mets after surgery has presented it’s own unique set of challenges, with new complications, more and more travel for hospital appointments due to the complexities of my medical situation, mounting side effects from the tumors/disease its-self, uncontrollable pain from neuropathic post operative pain, and new challenges faced with adrenal insufficiency. As you continue to read my pages, Patience… Adjusting after my second surgery & Pheo VS Fabulous VS AI , What’s going on 2016?!I can promise that I will always speak of some form of happiness, no matter the circumstances. That is my goal, to find the good in every situation… this is how I stay fabulous 🙂 ❤

As promised, my little haven of pink and happiness. I give you permission to hate me now

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3 thoughts on “Living with metastatic pheochrocytoma

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