pheofabulous

Life in an unpredictable body

Anyone with a chronic illness knows a certain unpredictability. Whether they will have a good day or a bad day is unknown.

But what if you lived in a body where the suddenness of the symptoms ruled your world?

Living in an unpredictable body goes beyond the scope of not being able to plan. It’s more than not knowing if you’ll get a debilitating headache or a pain flare. Those I can plan for, I do plan for.

Living in an unpredictable is not being able to trust your own body.

I love my body, but it’s hard to trust it.

Your body can feel like the enemy.

When I was first diagnosed with pheochromocytoma; I was scared, but also relieved. Having a diagnosis meant these ‘attacks’ made sense. The unpredictable nature of the symptoms had a name. I wasn’t just anxious, tired, dramatic, or weak.

These attacks are a real assault, but now there was a scientific explanation for why this was happening

There was a rare medical condition explaining the suddenness of my ‘bathroom floor episodes’. I wasn’t crazy, it’s real. Now everyone will see.

So why didn’t it feel any easier?

The disease is a mouthful, hard to explain.

People can’t pronounce let alone understand it

I still looked perfectly well, I didn’t ‘look sick’

Most people will never witness the attack

We don’t let people see us at our worst

Including doctors.

These attacks don’t happen on command, they don’t have a pattern or time frame. They are inherently random and devious. Striking at the worst possible times, but never knowing when.

In a clinical setting, this isn’t good. This means you will often appear perfectly well in front of the doctor, meanwhile your body is a human grenade

It’s been 13 years since I’ve lived with this disease. It hasn’t become any easier, I’ve just had to become more and more resilient.

When people hear ‘pheochromocytoma’ they think one tumor, singular. They think surgery; removal, one and done. This just isn’t the case for so many. It definitely wasn’t the case for me.

My first became many, and there’s different reasons for that. But I’m not here to talk about that today, I’m here to tell you what it’s like to live in an unpredictable body

A body that no one quite understands, not even me

When I go to bed at night, I don’t think too much of what I’ll do the next day. I may write down a note of what I need to do… but I do not have the luxury of planning ahead. I am a minute to minute type gal.

No choice.

When I wake up in the morning, I’m grateful when I feel well. However, that’s not the end of the story.

If I can get dressed, I’ve already had a huge win. If I can do it by myself, we are off to an even better start.

Now, it’s time to get really intentional about where the rest of my energy goes. Each task is like a small bump to the grenade, which will set it off? Will it be when I brush my teeth? Comb my hair? Perhaps when I’m blending my smoothie, when I bend down to pick up the fruit I drop on the kitchen floor? or maybe…

I’ll feel relatively fine. I’ll slowly begin to feel at ease, I’ll say “ok! It’s a low symptom day” and I’ll be able to do things I wouldn’t dream of doing in the past.

I’ll cook a meal, I’ll fold some laundry or get some form of movement rehabilitation in. I’ll take a nap.

The least suspecting.

I’ll wake up from the nap covered in sweat, flushed, my heart racing, my head squeezing, muscles tense, rigid with the knowing. It has not even begun…

My blood sugar drops, my temperature can’t stabilize, is my vision blurry? My chest is hurting. My legs are weak, but I’m so antsy. I can’t sit still, yet I can’t move far, it feels like I have a million ants in my bones. So tired. So much pain.

How can you be exhausted and yet feel like you need to crawl out of your own skin?

I’m not even describing a pheo attack. You can read about that here. This is just the randomness of an unpredictable body after 13+ years of having your cells bathed in adrenaline

The worst part is not having any control over how you feel and react. I’m a firm believer in being able to control this, but all of that logic goes out the window when dealing with chemicals in the body

That body chemistry is what’s going to determine how abrasive you respond, how you’ll go from smiling to crying, annoyed, tense, angry, irrational. This is the worst part for me, physical pain I can explain. This I can’t, it feels futile. Like an excuse for bad or rude behaviour.

If you’re reading this on behalf of a loved one, please know that it isn’t. We want nothing more than to feel like ourselves. When you sense this ‘rage bomb’ happening, I recommend a code word to be used like ‘tumor’! It can ease the tension, allow a moment to regroup and perhaps separate. We are all doing our best, there’s no guidebook.

The thing they don’t tell you about having one rare disease: it’ll create others. Secondary conditions

Everyone will focus on the primary one, all of your symptoms will be blamed on that. When in reality, most of them are caused by other things. Making it difficult to manage them, if the cause is unknown

  • Medications used to treat it
  • Treatment side effects
  • Secondary conditions (co-morbidities)
  • Chronic pain
  • Mental health & trauma response
  • PTSD

The thing about cancer is many cases don’t have symptoms because of the disease itself. That isn’t the case for me. This cancer has symptoms, as do the conditions it creates, the treatment has side effects, and there’s no reprieve.

I look well, so well sometimes that even I think it’ll be a symptom free day. I’m often wrong, but I can wishfully think, hope, and dream. My looking well has always been a personal F you to the disease.

No matter how many years it’s been, I’m always thrown off by the suddenness. I’m always shocked at how well I felt to how bad it gets. How quickly it can all take place.

I will forever be humbled how one moment I can be me and the next moment I’m a shell of who I am.

It will never make sense how I can not be able to speak, move, or respond, but my brain is still all there. A prisoner to my own body, grateful to have someone to help and resentful that I have to.

I am a big believer in mindset, in responding to what we can control VS focusing on what we can’t.

This only goes so far with an unpredictable body, but it is necessary to keep going. To pick up the pieces and become you again. Over and over.

The popular belief: If only we ate better, took the right supplements, exercised, thought more positively, drank apple cider vinegar, healed our childhood trauma, took cold plunges, detoxed our bodies, tried harder.

I wish the world we lived in would just try to understand this one thing. An unpredictable body does not care how much kale you eat, how much you exercise, what supplements you take, how positive you are, how healed you become, how many cold showers you take, how many detoxes you do, how hard you try.

I’m certain someone will read this and be saying “but your body wouldn’t be unpredictable if you did ___________ and _________” but that’s my point.

It does not matter what you do or don’t do, it does not matter how hard you try. It will always surprise the heck out of you. Even me, who is a believer of this rule.

I’m not saying these things don’t help, and that an organized effort can’t mitigate some of the severity

What I’m saying is that there’s not one thing we can do short of being cured by Jesus himself to change the way certain conditions will surprise attack

One thing I’m learning to accept is that no one will ever truly understand us. It’s taken a lot of work to learn this. Even more so to accept it. I no longer expect them to, and I’ve made peace with that.

It gets lonely at times, but I draw comfort from sharing my experiences. When I can give a voice to others like me, to feel seen and heard.

There’s nothing fabulous about living in an unpredictable body, but I will say this…

The moments of normalcy will never be boring

The monotony of daily living I treasure

The small stuff will always be big

I truly mean it when I say I feel grateful every single day. I’m even thankful to have this body.

It may be unpredictable, but it’s also fabulous.

Note about the author: Miranda is a 32 year old awareness advocate living with metastatic pheochromocytoma, adrenal insufficiency and mast cell activation disorder. First diagnosed at 19 years old, the episodic (attacks) didn’t resolve after surgery

Miranda was a high risk patient that was dismissed due to normal biochemical levels. Her symptoms attributed to anxiety.

On October 10th 2014 (four years later) Miranda was diagnosed with recurrent pheochromocytoma. This led to the discovery of over multiple metastatic tumours and a terminal diagnosis. Curative options no longer possible, she began palliative treatment at 24 years old.

Miranda and her husband were given a poor prognosis. They did not give up, she went on to be treated by a world class multi disciplinary team of NET specialists at the MUHC in Montreal, QC. Undergoing debulk surgery in 2016, MIBG therapy, daily Sandostatin injections and PRRT clinical trial in Quebec City. ‘fabulous despite the odds’ Miranda has been redefining terminal illness ever since.

Advocating for patient awareness around the world and of course – staying fabulous!

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6 comments

  5. Three years ago, I was diagnosed with a paraganglioma – very similar to a pheo as it does to the body what pheo does. This para was near my aorta which left me terrified and paralyzed with fear. It was a day of being diagnosed with tumors as they found another on my left ovary -totally unrelated to the first. I spent the next two months studying what paras and pheos were and why they develop. The Mayo Clinic was my best resource and wow did I learn a lot. In fact, because of what I learned, I was able to prevent my primary doctor from doing a biopsy. Had they done that, the para could secrete and spread rapidly. Before my surgery, I met with the chief of staff at a cancer hospital who planned to just simply remove the tumor. What he didn’t know what that the tumor needed to be surgically bagged before removing to once again, prevent secretion. We are all our own best advocate. For me, my para turned out not to be a para at all and was just a bunch of blood vessels all jumbled up. However, the process taught me a great lesson. Listen to your bodies and push for your health care. Do your research…even if ridiculed for it. If your doctor doesn’t listen to you, find one who will. I pray for your health and strength. There is also a great Pheo and Para FB page that up to date information is shared all the time.

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  6. Powerful words from Miranda and for me visual. I think feel differently. And I am not openminded as well.

    Since my diagnosis, I am now a certified peer to peer NETS cancer councillor, here in Queensland, Australia . Surprisingly there are not many of us, so to be able to simply talk to someone about the reality of the situation, simply talking and ask questions of someone who has travelled a similar path, well it helps.

    For me at that time is was groups on Facebook, forums like this and so on and looking back, having a supporter in my corner only a phone call away, or could meet for a coffee. That would have been gold. For me people like Miranda who give their support, their story and time gave me hope and strength, it felt less lonely, even with family and supporters around me.

    Now, I love to live and be present. To listen to the wind and feel it on my face. It isn’t just warm/cold or blowing a gale.

    It is hard to simple on the inside some days and like I am ok. Look well. And to be be thanked by some who has been helped can help on those days. So thank you Miranda. Not all super heros wear a cap.

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