This year was meant to be my Big Year for Writing. And, in a lot of ways, it has been! But there have been unexpected bouts of lag on a lot of my projects, because on February 14th I was diagnosed with two very rare tumours called paragangliomas, in very shitty places in my neck, near the brain, attached to arteries, near and/or on significant cranial nerves (9-12).
Some back story: I have a metabolic cancer disease that is a 1/1,000,000 condition called 'Hereditary PGL PCC' or just 'the SDHD Gene Fault.' You know you're doing well when your disease has no common name. I had a life-threatening tumour when I was 18, had it removed, my arteries removed, was lucky to survive, and was told - mistakenly - that the tumours would never return.
They should never have told me that, but hell, they didn't know. This disease is too rare, there's not enough patients, and there wasn't a wide enough pool to understand what was going on.
Since the discovery of these tumours (specifically a Glomus Vagale Paraganglioma and Carotid Body Paraganglioma if you like to look those things up), I've found that I've got one of the more severe manifestations of this disease in Australia. I'm seeing the best Endocrinologist in the state (it's a neuroendocrine disease in the same class of cancer that killed Steve Jobs), I'm seeing Radiation Oncologists for radiotherapy (not commenced as yet, still discussing options etc.)
The only cure is surgery, but I've been told that the surgery is so risky that it's not worth attempting until my quality of life is such that 'I have nothing left to lose.' Never fun to hear. The Neurosurgeon told me I should wait until there was compression on my brain, I see an ENT (Ears/Nose/Throat) surgeon on Tuesday, the Vascular surgeon says he doesn't want to touch the arteries at all until a Neurosurgeon is happy t o go ahead. The surgery itself is not safe, they will have to remove some of my skull, the arteries, risk cutting through cranial arteries (I already know I'm losing the vagus nerve on my right-hand side), which can lead to loss of voice (and my voice will certainly be permanently damaged), loss of the ability to swallow, to taste food, to do anything at all with the throat, move the head/neck, move the shoulder, and many other things.
Even if the surgery is successful, now that I've had three paragangliomas, we know they can come back to the same place, and the surgical risks at that point would be astronomical. This disease is fundamentally incurable, and let's be real, a giant pain in the ass, lol. It will - outside of something random - be the thing that kills me, sooner, or later.
It means a lot of blood tests, regular MRIs, PET scans, CT scans, meetings with specialists, my GP, and a lot of other things. And it's also exhausting. I am currently - mostly - asymptomatic, aside from some persistent but mild neck pain, and fatigue, and mild issues swallowing. The tumours might be slow growing at least, and some people wait years before they decide to go ahead with surgery or radiotherapy, but we're still waiting to hear if mine are actually slow growing.
The fatigue, and also running around to appointments, and hearing from fellow patients around the world with this kind of cancer who are dying from it, can get to a person. But I'm also very fortunate, because the disease is so rare, I'm seeing a lot of the best surgeons and professionals in the state, usually the heads of their departments in multiple hospitals. Today I find out PET scan results to see if I have a metastatic condition or tumours in any other locations, before getting a follow up MRI to measure growth rate.
Art / writing wise things are going well, just slowly. But given this is all pretty much overtaking my entire life, I thought I'd update about it here. Also how have I not updated here in three years? Lol. You're welcome to ask any questions re: the disease you want, there's always too much to talk about in a journal post anyway.