I am actually sick with a cold at the moment. *thumbs up* This is the virus that never ends. It seemed like I was starting to turn a corner, and then it was like ‘haha no, here’s the sequel!’ I’m unimpressed. Just imagine me staring into the camera like I’m in The Office.
A quick summary for those new to the game: I have the SDHD gene fault, also known as Hereditary PGL PCC, which is a hereditary genetic neuroendocrine cancer disease (the most inheritable genetic cancer disease in the world along with the other SDH~ faults). For me, it causes tumours called paragangliomas to grow primarily in the head/neck. I think of them as koalas clinging to my nerves and arteries.
I have a 50% chance
of metastasis at any point, and this disease is incurable. I grew a very
rare form of tumour called a carotid body paraganglioma at 18 that was
removed. Now, at 35, I have three paragangliomas - a glomus vagale para
(the rarest type, at a 1 in 5 million occurrence rate) called Thelma, a
carotid body para called Louise and a glomus tympanicum or glomus
jugulare para called Caramello that’s currently too small to be seen on
MRI, but has been spotted on the PET scan. I am very good at growing these paragangliomas and my ENT surgeon called me a ‘tumour machine’ and I call myself a ‘tumour incubation factory.’ Managing my case are: an
Endocrinologist, a Radiation Oncologist, an ENT Surgeon, a Vascular
Surgeon and a Neurosurgeon. (Or as I like to call them, a boy band).
(The rest under a Read More cuz there’s a lot).