On August 1st, 2022, I was diagnosed with a pheochromocytoma on my right adrenal gland. I am a 55-year-old male living in Queensland, Australia.
My pheo was quite active and found by pure luck. I went in for an ultrasound of my prostate for a totally unrelated issue.
I still remember asking the young girl doing the ultrasound “So what is that?” expecting her to say something like “Oh that’s your …”. But her more serious and cautious response was along the lines of “You will need to speak to your doctor…” So, my Pheo was found incidentally.
Then it was just a slow-mo whirlwind of waiting and tests.
The thing is the prior 18 months had been a medical quandary… From my party trick where a sip from a cup of tea left me sweating profusely to the unexpected diagnosis of Diabetes in April 2022, there have been several unexplained — now all mostly gone — medical issues. That was a surprise, to learn that I had a pheochromocytoma and how the tentacles had spread silently and invaded my life in so many ways.
September 14th, 2022, and the pheo was removed. Life changed and moved fast. My most powerful memory after surgery was realising my heart was not beating so firmly, I could not feel it and hear it “thumping”. I felt more Zen. I also had a few “unusual” issues in hospital (including a very large painful hematoma) but over a total of 9 days and I really don’t want to go back.
People who have never ridden the Pheochromocytoma Zebra in all its bareback glory have asked me “What has changed?”
I mean, I didn’t know. I was a medical Unicorn who can get nerdy doctors excited with a wave of my hand. So, over the last few years I had some odd – strange stuff – going on. Medical stuff. The head scratcher, crazy stupid stuff. From diabetes out of nowhere to unexplained heart palpitations, rare blood conditions and so on. One of those unrelated things resulted in an ultrasound in the “secret men’s business” zone…. Totally unrelated. August 1st 2022…
Fast forward: 14th September for pheochromocytoma removal via adrenalectomy. I joke about it. I would not wish what I know now on anyone. I can only explain how I felt and feel after … now.
You see, a person with a pheo has a different perception of what is “normal”.
Perhaps they don’t even realise it. Well, that has been my experience, post-surgery. Pheochromocytomas are hard to diagnose, and over 70% are diagnosed in autopsy. So if you have been diagnosed and had it removed, chances are they saved your life and your family have you to love them thanks to it being removed.
You would wish if they found a tumour it was just a plan old blob… not a grumpy and active pheochromocytoma!
So post-surgery. All the things I thought everyone had and were “just normal “… stopped. I can still recall the sensation of how “relaxed” should feel. My heart — I could not feel it beating wildly, I felt cooler, I felt happier. I felt more zen. A deep breath was actually quite Zen… It was as if, pre pheo eviction, my normal was 10x faster, from how I was thinking to how my body itself functioned. (Mostly) I was a sceptic pre surgery. I knew I needed the surgery, but I didn’t understand how urgent it was. I do now.
When someone asks me “How does it feel to have a pheochromocytoma?” this is how I explain it:
[If I were a car.]
Me : [A cartoon Superduper hypercar in “Cars” ]
You : [Standing at the curb to cross the road in Radiator Springs]
[That was me driving past you 3 times as you blink.]
Me. “What ??”
That was my normal.