it’s been nearly 3 years since i wrote in this blog. a lot has changed. a lot hasn’t.

i’m not gonna offer a laundry list of ways that my life has changed or hasn’t since i wrote last. anyone who might stumble upon this blog likely follows me on my art blog or on my various social media and/or knows me in real life, so i won’t waste space and time on all that.

the reason i came here today was to write a bit about my current brain stuff, as a way to keep processing what i’m going through. i don’t know if anyone will ever read this but i write this thing mostly for myself anyways.

so yeah, after some years of not much happening with my brain tumors we are now at a point of activity again. i had yearly and then every six month MRIs since surgery in 2020 and most every scan showed not much change. but cumulatively there was some slight if glacial growth (1mm since 2022) and this last MRI has my radiation doc feeling like it’s time to pull the trigger, as he said, on going forward with a course of radiation to stop the growth of these things before they can do me irreparable damage.

the biggest danger areas seem to be: a facial nerve – basically control over the entire right side of my face; my carotid artery; my brain stem (again); and my right auditory nerve. those are a lot of very sensitive areas. and while i don’t think i’m having any current symptoms that are new, just the same old droopy right eyelid and occasional double vision i’ve had since coming out of surgery in 2020, i really don’t need to add to that. enough time has passed since surgery that i feel ready to do this. not in any way excited about it but resigned to it, ready to take it on.

and now things seem to be moving swiftly. i had a PET/CT scan yesterday, which was new and odd. just the idea of being radioactive for a short amount of time is a weird thing to contemplate and experience, not that i could feel it in any way. the scan itself was different than what i’m used to with an MRI but better in some ways (not as loud or claustrophobic) and worse (just physically uncomfortable due to the curved platform i was on, and much longer) in others. but it’s over. that scan will help my radiation doc map my brain and the location of my tumors for the actual treatments.

the tumor board – my radiation oncologist and my neuro oncologist with i’m assuming my neurosurgeon and some others who deal with brain tumors – presumably met yesterday afternoon to discuss my case. i guess one of my oncologists will tell me more about it when i see them next. monday i have my CT Simulation appointment, i.e. thermoplastic mask creation. here’s a pic from the internet so you can visualize it:

yes they actually screw your head down to the platform you’re on, so you can’t move… cuz they don’t want to accidentally hit any healthy brain tissue and only want to hit the tumors. you can see how this might be a little claustrophobic and anxiety-producing. i don’t generally have claustrophobia but the gravity of the situation – them having to be precise within a millimeter so as not to fry my actual brain cells – is certainly anxiety-producing. my doc did already give me a prescription for some ativan; hopefully that will do the trick. and debra is coming with me monday and will come to at least my first few appointments whenever those get scheduled.

so yeah. i know lots of folks have gone through these treatments just fine and many do not have a lot of side effects. but some folks do. hair loss, at least in the spots where the radiation goes in and out, is common. nausea, not my favorite. and varying levels of fatigue are common, especially towards the end of treatment and in the months after, as it is something that is cumulative. i’ll be getting 5-6 weeks, 5 days a week, 15 minutes a day treatments. (i can’t remember the specific number of rounds but it’s somewhere between 26-30.)

i am hoping i can schedule my treatments for afternoons, so i can still work my regular dog walking schedule in the mornings. and i am praying the fatigue is not so great as to affect my ability to keep working in general. cuz if it does, then that brings up a whole ‘nother set of issues and stresses for me to deal with around money, i.e. having enough money to live off of. and of course there’s still whatever the cost of all this health care will end up being to me. i have insurance and have already met my deductible this year because of 2 MRIs so should only have a 10% co-pay but with so many rounds of radiation that’s bound to add up. i have no idea what to expect on that front. (the PET/CT scan was a $10K+ procedure that i ended up only having to pay $225 for which is great but with so many rounds, who knows.) i really don’t wanna have to do another gofundme, but i guess i will if i need to cuz i have no savings and my credit cards are already all maxed out with previous heathcare, vet and just living bills.

maybe i’ll keep writing about the radiation process as i move through it. or maybe not, if it’s unremarkable. but i just kinda wanted to record my thoughts about it all while i’m anticipating it. thanks for reading.