Tag Archives: radiation

1 down, 29 to go!

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despite all my anxiety, the first radiation treatment was pretty quick and easy. debra being there with me definitely helped calm my nerves. so did the ativan i took. lol

i couldn’t really remember what they told me about check in – they’d given me a special ID card and showed me where the dressing room was on the day i got my mask made, but since it was in between a PET scan appt in a totally different part of the hospital and a follow-up with my neuro oncologist back in the cancer center, i was a little confused as to where i was supposed to go. so we just checked in like normal at the cancer center and sat in the lobby. they did eventually come get me. but today i learned i don’t need to do that – we can just bypass that, go in and check in with my ID back by radiation and go right to the dressing room that’s right next to the radiation room, which they use as a waiting room as well. they’ll come get me when they are ready and debra can stay in there and wait for me.

it’s pretty empty in radiation in the afternoons. i guess most patients opt for morning appointments, but since i work in the morning, i asked for an afternoon slot. it felt like maybe i was the last one of the day today, it was so quiet. but i much prefer the quiet than the bustling chaos of the mornings, which i’ve experienced when i’ve seen my neuro oncologist.

anyways, the radiation techs are so sweet and nice! they explained everything to me once i was in the room, got me situated on the extremely hard carbon fiber platform, snapped my mask down over me and let me wriggle around a minute to get comfortable, explained that there’d be xrays taken first and they’d be looking at those and other images for a few minutes, and then the radiation would start. they left the room, for their safety, and monitored from an observation room a few feet away.

i didn’t really feel anything, but i could hear the machine whizzing as it moved from one side of my head to the other, as they are treating both of the tumors in the same session. they also had some music playing softly in the background – i think it might have been beyoncé but i wasn’t really focused on it. mostly what i heard was my own heartbeat in my head and throat since i was nervous, and was aware of how dry my mouth was (again, nerves) and how smooshed my face and neck are under the mask. but i just kept telling myself, it’s only 15 minutes. you can do anything for 15 minutes. did some breathing exercises where you count your breaths and after a few minutes of that i was almost nodding off in there. and before i knew it, it was over.

i did at a few points experience a very strong smell of chlorine. maybe they just use some kind of cleaning product on the machines that resembles chlorine but i have also read that some people experience strange smells during their radiation treatments, olfactory hallucinations of sorts. so not sure which one it was. i’ll have to note whether it happens again. i only smelled it when the radiation was actively beaming in.

today i learned it will likely be 2-3 weeks before i start experiencing noticeable fatigue and hair loss, and that will continue throughout. i might also get headaches and nausea, the further we go along, as my brain might experience inflamation from the treatments. they have stuff they can prescribe to help with that so i just need to let them know about anything out of the ordinary i experience. i did already pick up some ginger drops to have on hand for the nausea.

i guess it was actually kinda anticlimactic, but i’m grateful for that outcome. maybe i built it up a bit too much in my head but you know, i don’t do so great with unknowns. and i don’t know how anyone wouldn’t be nervous about starting this process, of willfully signing up to have your brain irradiated for 30 days. but now that i know it’s pretty quick and easy, i think i won’t be nearly as stressed about the actual treatment process going forward. my radiation doc seems to think i will tolerate the entire course of treatment well, so i hope he’s right.

thanks to every one of you who checked in with me today and over the weekend – called, texted, sent messages on social media, etc. it’s really wonderful feeling not so alone dealing with all this, even though ultimately i am the one all by myself in that machine getting my tumors fried. but it gives me strength knowing my community of friends far and wide are with me and ready to support in whatever ways i need. so thanks. i love you all. ❤️

the calendar they gave me with my first treatment already x’d off. it’s now on my corkboard above my desk.

i think it’s really sinking in now…

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everyone’s been saying to me that they think i’m being so brave or that i’m dealing with this so well, referring to my impending course of radiation on my brain. i dunno, i think it’s more of a case of fake it til ya make it. i’ve just been accepting the inevitability of it and going through all the steps, taking them on one at a time: the decision to go forward with radiation was made, then the schedule was made, the mask was made and the CT scan happened, the PET scan happened, the follow-up visit today, and now all that’s left is to start six weeks of radiation on monday. one foot in front of the other, day by day.

i guess maybe it has looked like i have been putting on a brave face. but how i really feel is that i’ve put off this radiation for so long now that we’ve just finally reached the point where i can’t put it off anymore, and there’s no other option to deal with these things. it’s either radiation or i just roll the dice and see what happens when they get so big they really start pressing on sensitive stuff inside my head. i have no way of knowing how long i will live, how many more years these things have to grow, and how exactly they would affect me. but my chances of less bad things happening are better with the radiation than not. so that’s what i’m doing. (and yes, i am also beating myself up a little bit for being so bullheaded that i didn’t just do this years ago when the doctors first wanted me to, the tumors were smaller and i was younger and in better shape. i had my reasons at the time but i guess hindsight is 20/20. but here we are. it’s kinda now or never.)

i don’t feel particularly brave about it. i’m pretty fucking freaked out. i saw my neuro oncologist this morning for a follow-up to discuss the PET scan and what the tumor board said. both just basically confirmed what we already knew: i have a fairly sizeable (several centimeter big) tumor on the right side of my head and the tumor that was removed in 2020 – the tiny tail part they couldn’t get, which was really news to me up until about a month ago – has grown back, much smaller than the other tumor but it’s there, deep in the center-left of my head. so they want to treat it too.

the doc showed me pics of the PET scan of my brain which i wish i’d taken home with me but for some reason she didn’t give them to me like she did last time. but the scan helped me visualize it better. and i was able to ask her all my non-brain PET scan result questions, which once again reinforces that i really shouldn’t look at test results like that before talking to the doctor cuz i don’t fucking know what they are saying and dr. google isn’t always helpful in explaining them. she said everything else looked fine. the main reason they extend the PET scan beyond just the head and include the torso is that on very rare occasions, meningiomas that are aggressive metastasize in the lungs, which would show up on the PET. but there was nothing there, and everything else that was covered in this scan looked good. so that’s at least a relief, as i was worried about some of the wording in the written test results as it referred to my liver and spleen. but she said nothing to worry about. so i won’t.

i won’t see her again until the spring, about 4-5 months after i’m done with radiation. as i was typing this up, i got a notification that she’d scheduled an MRI at the end of March 2027 and a follow-up appointment in early April. after radiation happens, she will be the one continuing to follow up and watch my tumors for the next many years, possibly the rest of my life. radiation should be a one-and-done for me, but on rare occasions radiation “fails” to do what it hopes to do, which is stop the growth of the tumors, and then if that happens we’d consider some medical options, chemo-like medications, possibly clinical trials. but hopefully i will never have to have those conversations cuz radiation will be the last intervention i need on these.

i’m pretty nervous. and pretty glad i have 9 ativans left to get me through the fist week+ of treatments. i might take 2 the first day. lol my doc today kept stressing the fatigue as the main thing i’ll feel from the treatments and that can last/culminate a few months after treatments stop. there could be short-term side effects – possibly exaggerations of the same kinds of things i saw post-surgery, i.e. swallowing/speaking issues, right eye/double vision issues. oh goody. won’t the next 6 weeks/couple of months be fun? i only pray that it doesn’t get so bad i can’t work, cuz i have a lot of pet sits lined up that were scheduled before i knew about my radiation schedule and a few that have popped up since that i didn’t want to say no to. i need to be able to work to pay my bills… just my normal bills, i’m not even talking about my medical bills which are starting to trickle in.

so yeah. i came home from the appointment today and kinda fell into a funk. i had thought i was gonna go downtown to partake in all the dolly parton 9 to 5 day memorial festivities – there’s a second line (of course) and there have been numerous events going on in the quarter all day plus 2 after parties – but i’m just not in the right headspace. i couldn’t switch gears. so i didn’t go. instead i’m gonna pick up something yummy for dinner and catch up on my tv shows and just chill tonight. maybe do some more work in my art studio.

i’ve been a little stuck on painting these silly folk/pop art cat paintings with reassuring messages like “you got this,” “you can do it,” “you’re doing great,” “i believe in you,” and “keep going.” why? cuz these are all the things i need to keep telling myself as i embark on these next few months’ adventures. my art has always first and foremost been for ME, and these are completely for me, though i think/hope others will like them and resonate with them too. who doesn’t want to wake up to a motivational cat every day? yesterday i even customized a trucker hat that i’d caught at a mardi gras parade with one of these “you got this” cats. maybe i’ll wear it to my treatments.

i’m sure i’ll have more to say next week. thanks for reading, y’all.

it’s real now: i’m getting radiation on my brain

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no, this isn’t part of my halloween costume. it’s my radiation mask.

earlier this week, i went in for my CT/Simulation appointment, which is what they do prior to a course of radiation. they make this mask out of thermoplastic mesh and they mold it to your face. the sheet of mesh is warmed so it’s pliable and then draped over your face and the techs smoosh it down til it’s a snug fit all around your nose, eyes, mouth and other facial features. it doesn’t take long to harden and then they snap it down to the platform you are on so you cannot move your head at all. i was not able to move my mouth to speak, open my eyes, and really could only breathe out of one side of my nose. but i could breathe. it’s mesh so there are holes thank goddess or it would be unbearable.

i’m not gonna lie it was a little scary getting snapped down to the table to get the CT scan, which they will use in conjunction with the PET scan i got on friday and my last MRI to map where my tumors are and where the radiation goes. but thankfully it didn’t take long. and my radiation treatments will only be about 15 minutes each time so i don’t have to be in the mask for very long. my head was pretty immobile but i could still swallow, which does move your head slightly. i’ll be asking about that and i guess also trying hard not to have to swallow. but swallowing is one of those involuntary things you just do sometimes without thinking about it so i’m nervous about that. my biggest fear is inadvertently doing something that moves my head and they fry my good brain cells. but otherwise i think i’ll be able to tolerate the treatments ok, as the mask part is really the hardest part of it. thank goddess i’m not claustrophobic.

they tell me i won’t feel the radiation at all while it’s happening. many people do develop slight burns or some level of skin irritation at the entry/exit points and sometimes folks lose some hair around those spots. it’s not as common to lose all or large parts of your hair, though i guess it is still a remote possibility. i went ahead and already buzzed my hair pretty short so you can already see my scalp around the sides and back, with a little more on top. my hair is thinly placed on my head, always has been, so if some falls out i don’t think it’s going to be very dramatic. i can always shave part or all of it if need be. that part doesn’t really concern me.

the techs were really sweet. i’ll be in a different room for the actual radiation treatments but it’s just across the hall and i’ll probably have the same techs. when i left they gave me a parking pass for the oncology parking lot, which is off Galvez and is the main entrance to the cancer clinic. it’s a much shorter walk than parking in the main UMC parking lot. this will make things much faster and it will be good to not have to walk so much after treatment in case it does affect me.

i got the results of my PET scan in on MyChart and i couldn’t keep myself from looking. i don’t really understand what it said but after some googling of terminology, i think it’s saying there are some concerns about my liver and spleen functions. so i guess i have that to look forward to after radiation, exploring that more or figuring out what needs to be done there.

the next appointment is my follow-up with my neuro oncologist. i’m guessing she will explain the PET scan and give me referrals if needed. i’m also hoping she tells me how the tumor board went, even though it clearly is not affecting the recommendation to get radiation. i’m still curious what was said.

and then after that, i start with my first radiation appointment on monday, september 28th at 2:30pm. all the other appointments will be at 2pm. it will be monday – friday for six weeks, ending on november 6th. seems like such a long time. ugh. hopefully i will get used to it and it will go by quickly. and i hope my energy holds up so i can keep working. cuz i don’t have backup and i don’t have any other way to support myself if my pet income isn’t coming in. but i guess we’ll cross that bridge when it comes to it.

i’ll keep updating as things happen.