I think it’s about time I share with you all the number one rule when it comes to your medical journey:

It’s your health, and only you have control of your future

I will take you back to the worst day of my life.

I was being continuously followed by my first endocrinologist that treated me for my first run in with pheochromocytoma in 2010. Every year I would complain of symptoms and share my concern that I thought the disease was back. Every year I would be re-tested for adrenaline in my urine to determine whether or not the disease had ever come back, and every year my doctor would repeat the same phrase,
“You’re fine”.
They didn’t do any further testing, despite my complaints and suffering.

I had no experience at this time, no knowledge of the disease, and although I knew what they were doing was inadequate based on the symptoms I was experiencing… I didn’t know what else to do, what could I do? I’m just me, I’m not a doctor, I can’t do anything.

Nobody will stand up for you better than yourself… 

I would return to her office one final time…  except I wouldn’t be told ‘I was fine’

I would give anything today to be told I was fine…

I would however be on the other end of a surprise assault, being told my pheochromocytoma was back.
I would later find out it had spread all over my major organs, it was malignant, metastatic, aggressive, oh did I mention I had 1-5 years to live?

I was 24

The difference this time?

I had experience, and I planned to use it.

Nobody will stand up for you better than yourself…

I was told that I would need another surgery, an even more aggressive approach than the first time (read: My first surgery)

After that I would have ‘management’ options, well if that’s the case…

If I was only going to have five measly years left, (at best apparently) I was definitely not going to settle for less than the absolute best to operate and increase my chances of survival and life longevity!

I wanted the best possible doctors who would listen to me, be motivated to help me, be ahead of the disease, and understand the difficulties that come with treating a rare illness.

Time to start researching, and becoming my own advocate.

I still have a whole lot of fabulous to spread around! Unfortunately with such a rare disease, there isn’t the same selection and expertise as other procedures… due to the lack of patients they see with this disease.

I was understandably distraught, and couldn’t accept this as my fate. I could not just sit back once I’m told such paralyzing news. So that night, charged with all of my extra adrenaline … (bad joke) I set out to find the best qualified pheochromocytoma cancer facility in the entire world! I would go anywhere, I didn’t care what I had to do, I just knew I had to do something!

Well, I didn’t have to travel the world. Although it would have been nice to find some spa-like facility that gives complimentary facials and pedicures after treatments 😉

It was back! My fierce determination, I only lost it for about 3 days… but still, shame on me! I was over the moon excited to find a multi disciplinary team of doctors. Specifically a very qualified endocrinologist specializing in cancer like mine, and a team of incredible devoted surgeons. I found my team of doctor House, and I was ecstatic. 

Now the only trouble was… I needed them to accept me! So what did fabulous me do? Try and get a referral from my doctor, go to the bottom of the pile and anxiously wait by the phone like a teenage girl? No….! I just e-mailed the site director directly, dazzled them with my fabulousness, and was crammed into their busy practice that following Tuesday! The rest is history.

Three hours away, I am being treated by who in my opinion are a team of super doctors that are highly specialized in such a rare illness, and eager to learn more and more through my experience.

Often people will not settle when it comes to trivial matters because they are easy to change, but why don’t we stand up for ourselves when it really counts? 

The moral of the story…. Don’t ever give up on yourself or take the convenient path, often it’s less rewarding. 

(It also doesn’t hurt feeling like a badass boss lady, not taking no for an answer!)

‘Follow’ me to continue to see the epic battle of Pheo VS Fabulous!

Fabulous,

xox

#pheovsfabulous #mirandastrong #pheochromocytoma