Living with pheo cancer

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 horrific outcome that I can never know when is coming.

It doesn’t matter if I’m simply going pee, brushing my teeth, or wanting to do something more ‘challenging’ like washing my face or putting my clothes on. Yes, these things must be planned and assisted, all of them actually have some element of planning involved and assisting of some sort.

Imagine if you could literally no longer brush your teeth without setting off some sort of internal warfare in your own body? Now think of every other monotonous task you take for granted every day, just the physical act of sitting up from bed, making a light snack, bathing yourself, dressing yourself, simply walking, being alone…

It’s not always complicated tasks or things we wish to have access to, my needs have become stripped from me, not my wants.

My basic every day function is no longer accessible to me, and I now consider what many describe as normal – a luxury.

This is a little glimpse at what my world looks like with pheochromocytoma cancer…

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.

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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