Category Archives: brain saga

posts about my ongoing health journey living with meningiomas, including brain surgery and now radiation.

8 down…

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just got home from my radiation appointment. i needed a treat today and decided to drive past pandora’s on the way home to see how long the line was and there was no one there! i haven’t really had many snoballs this year at all and was just kinda craving one since the sun was out and it was kinda warm. i tried something new – coconut stuffed with handmade coconut ice cream! it’s really good and somehow not as sweet as the fruitier flavors i usually go for like mango and strawberry. the ice cream had little chunks of coconut in it! it was just what i wanted.

i haven’t written here for a few days. it was nice to have a weekend off from treatments, a break from the routine of: rushing to finish work; coming home and changing into clothes that don’t have metal on them (surprisingly challenging); eating a snack so i’m not lightheaded or hangry but not too much so i’m not laying on the table with a too-full stomach; driving down around 1:30 for my 2pm appointments to allow time for the near daily disappointment of not finding an open parking spot in the oncology parking lot (which is much closer to the oncology clinic), necessitating a brisk walk from either the parking garage or a street spot on galvez on the other side of tulane avenue. i know it doesn’t sound like a big deal but some days it just feels like a lot. i don’t enjoy rushing around and i don’t like laying on the table feeling my heart beating fast cuz i just power walked 10 minutes down the street to get there on time. so yeah, it was nice to have a couple days where i didn’t have to do all that or even think about it.

my weekend was uneventful though thankfully i managed to focus enough on sunday to knock out most of my taxes that are due on october 15th. and then it was monday and back to the routine. they’d moved my appointment up to 1:30 on monday because of the saints monday night football game so i busted ass to get down there on time. i learned that day that the tech rotation had two new younger techs working in the radiation room i go to. one of the techs from last week was still there but my favorite guy was somewhere else. the treatment was fine, i’m getting used to it i guess. i don’t love it, especially the mask, but i don’t feel like i need anxiety meds anymore at least.

mondays are when i see my doc, after my appointment. so they weigh me and take my blood pressure and put me in a room til he makes it there. i like my radiation doc. he’s young and wears two earrings. he’s kind and has a gentle way about him. he just asked how i was doing and if there were any new side effects or issues or if i had any questions. he’d seen my messages and, well, the best way i can put it is that he was not impressed. he basically said they don’t usually see side effects in the first week. so now i’m worried he thinks i’m a hypochondriac! lol he didn’t belittle me or anything just said to keep him updated if anything got any worse and that he did have anti-nausea meds to prescribe for me if i need them.

he started to ask me about my scalp, the skin, and if he’d talked to me about moisturizer… and then he stopped himself and said, oh, actually, you won’t probably need to deal with that. what we are treating is very deep inside my head and while i don’t really understand how that changes anything, he seemed to be indicating that i won’t probably have any issues with my skin/scalp in the treatment area. so that was new to me and good news. although since everyone is different in how they react, never say never.

he seemed happy with my progress and that i was tolerating it well. and he said he thinks i’m going to continue to tolerate the rest of the treatment fine. he’s optimistic it won’t affect me much. so i will try to also be optimistic about that.

yesterday was kind of a shitty day but it was my own fault. i have been going to bed at 9pm most nights to try to get a good night’s sleep, given that my cats are assholes and wake me up between 5-6 every morning for their breakfast. and that had been working great. but monday night i stayed up watching the awful, disappointing saints game and even though i stopped watching at the end of the 3rd quarter, i guess i was amped up and just couldn’t fall asleep. i don’t think i got to sleep until at least 11:30-12am. and the cats were particularly bad and started knocking over loud things at 5am sharp. so i was kind of a zombie all day, which made me feel pretty awful. i made it through my morning of work and picking up donations for el pueblo but after my treatment i just felt icky. i tried to take a nap but i’m a horrible napper, i just couldn’t do it. but i did get caught up on sleep last night finally and felt much better this morning.

today’s treatment was fine but i’m just increasingly aware of the process of having my brain irradiated. they always say you don’t feel anything and i guess on the grand scale of things, i don’t. but even without the audible prompt of the continuous tone of the radiation machine, i can literally feel like a pressure change – like folks who are sensitive to barometric pressure changes – when the beam starts penetrating my head. and that awful fucking chlorine-like smell! it’s getting fainter but it’s still there. so while it doesn’t hurt or anything, it’s really not a pleasant experience for me. but today i counted my deliberately slow breaths continuously and got to 65; before i’d been counting to 10 and starting over, as this is how the wind down exercise on my headspace app does it. (this is the app i listen to in order to shut my brain off at night and go to sleep. they do a little wind down mediation type thing before telling you a really boring, very slowly spoken story which works like a charm to knock me out usually in 10 minutes.) i’m really grateful that the actual amount of time i’m on the table is only a couple of minutes cuz it would be a lot harder to have to endure longer periods of time.

i did feel a little nauseated today when i got off the table and was walking to the car but thankfully by the time i got to pandora’s it had passed. i might try again to take a nap cuz i’m feeling pretty drowsy right now.

so that’s where i’m at. 8 down, 22 more to go! halfway through my second week. onward!

thanks for reading, for following along, and for all your check-ins and financial donations. it sometimes feels like a very lonely thing to be going through but i am so grateful for my wide community of folks who are holding space for me. i love and appreciate you all!

week 1 of 6 done!

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cause for celebration, indeed. i’ve made it through my first week of brain radiation treatments and it hasn’t been awful. i wouldn’t say it’s been fun, but i’m getting used to being strapped into the mask and it’s been overall relatively easy this week. i know it will get harder as i go but i gotta celebrate along the way. i did a hard thing. and now i have 2 days to rest and recuperate before doing it again.

things i’ve experienced physically this week: small headaches, thankfully nothing too bad and ibuprofen has been enough to control them; intermittent mild nausea, which seems to be better when i’m on ibuprofen which makes sense cuz it’s the inflammation of my brain that causes the nausea; other mild digestive changes, of which i’ll spare you the details; a little bit of itchiness on my scalp right after my treatments, but it goes away; fatigue has been hard to measure but i definitely have felt more tired after treatments and into the evening, but feel better after sleep and have been able to work just fine in the mornings.

the other stuff is harder to talk about and explain, the psychological toll. there’s just n unsettling feeling of yeah, they fried some of my brain cells this week. i feel a little slow in general. and that chlorine smell i mentioned that i smell as soon as the radiation starts beaming into my head is starting to make me feel a little nauseated on the table. it dissipates as the treatment goes on and thankfully it’s only for a few minutes, but yeah, i do not like that smell. it’s the smell of actively burning my brain cells and my skin and hair in exchange for *hopefully* damaging the tumor cells so they stop growing.

no changes to my skin or hair yet that i can tell, aside from the itchiness i mentioned above. i am starting to wonder if i’m gonna have a line of hair loss across from one side of my head to another cuz it feels to me when i’m on the table that the machine is tracking from the big spot on my right side, where it spends more time, all the way over to the smaller spot on my left side, where it ends. like it doesn’t turn off and reposition, it’s continuous, a smooth movement and i hear the sound and smell the smell the whole time. so who knows. i might need a very creative mohawk or other punk rock hairdo for a while once it starts falling out. lol

i keep forgetting to try to take some pictures of something while i’m there to have some visuals for these blog posts. but since there’s no metal allowed in the radiation room, debra has been holding on to my phone and other things while i go in. but maybe i can ask the techs on a slow day if i can take some pictures. they probably wouldn’t mind.

oh, and the last thing i’ll tell you… today mysteriously my appointment time got changed to 1:45 instead of 2pm in the portal, no notification whatsoever. i just happened to look in the portal for something else and saw it. so i hustled to get home from my last dog walk and showered/changed and eat something before picking debra up and going down there. we ended up getting there early cuz gratefully there was an open spot in the oncology parking lot today. so we made it, but i was hustling. and i hate feeling rushed.

i also noticed in the portal that monday’s appointment had been changed to 1:30. so when they brought me back, i asked the techs about it. they said don’t ever worry about what it says in the portal – it has a mind of it’s own. go by the paper calendar they gave me, which indicates 2pm for every day going forward except monday it does say 1:45. they think it got changed today just cuz it’s friday, and, ya know, wanting to start the weekend. and monday, well that’s a saints game – monday night football! since the medical center is really close to downtown and the superdome, traffic starts getting crazy down there after noon, what with all the tailgating and champion’s square and all that. so they try to move people up on the schedule to get done sooner. that cracked me up. of course, a saint’s game! gotta love this town. who dat!

hump day

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today i awoke with a new fun side effect of radiation – dull nausea. i can be grateful it’s not full-on nausea that actually makes me wanna throw up, but this always-present-in-the-background variety of nausea isn’t great either. and it’s not something i’m accustomed to. i am rarely nauseated unless i have food poisoning or some viral bug that makes me so. and there’s really very few bodily sensations i hate more than nausea. but i’m guessing i’m gonna need to befriend this one cuz i think it’s with me for the duration, as it is a side effect of the swelling of the brain. thankfully it’s not so strong as to kill my appetite or keep me from eating. (yet.) it kinda comes and goes. and ginger tea and candies have been helpful.

i have been sending notes to my radiation oncologist via the portal about these side effects. yesterday i wrote him about the headache and he was glad i told him and just said keep taking the ibuprofen as needed. i wrote him this morning about the nausea but haven’t heard back from him yet. i’m guessing he only checks his messages in the portal once a day. i know he has something that can be prescribed for the nausea but i’m just not sure i really need it yet, since this is such a minor case of it. i’ll see what he says.

today was day 3. debra and i have a routine down now – i pick her up at 1:30, it takes 10-12 minutes to drive down canal street to galvez and into the oncology parking lot, and like 5 minutes to get inside through security and checked in. i like being early and having a few minutes to settle in the women’s dressing room. well today we encountered a problem we hadn’t anticipated: the oncology parking lot was full and there was already one car in front of us waiting for a spot to open up. this had not happened before. in fact yesterday there was hardly anyone in the parking lot.

we ended up having to rush to go park in the parking garage where we can get our ticket validated, but it’s on the other side of the hospital, the tulane avenue side, so it’s a bit of a hike to get back over to oncology on the galvez side. i guess we could have sat there waiting but who knows if a spot would have opened up in the oncology lot in time and i didn’t want to be late. we had to hustle but we got checked in to radiation with 5 minutes to spare.

i realized on this third treatment day that the amount of time i am actually under the machine getting irradiated is probably more like 5 minutes. not 10. not 15. i guess 15 is how they make the schedule, the time slots, allowing for time to fetch you from the dressing room, get you on the table, snap the mask on and get you all situated. i can’t wear my watch when getting treated – no metal allowed – so i can’t time it, but i didn’t take any ativan today so wasn’t altered at all and had a much better sense of time. this makes going there even easier, knowing the amount of time i’m on the table is so short. i count my breaths and listen to whatever music they have playing (old school r&b today) and before i know it, i’m done.

i decided to ask one of the techs about the chlorine smell that i keep smelling and he said it’s not an olfactory hallucination, it’s actually some kind of reaction of the radiation emission, something about ozone, i didn’t really understand it. but he said he’s heard that often from patients. so at least i’m not going crazy and my nose is working just fine. lol

so yeah, another quick in and out day, aside from the parking kerfuffle. i noticed right after walking out of the radiation room – well really almost as soon as they took my mask off – that i had an itching sensation in a spot on the right side of my head which must be where the radiation is going in. you’re not supposed to scratch it cuz the skin is already breaking down in that spot and you don’t want to irritate it, but i could totally tell. it’s not sensitive now, hours later, but in the moment right after the treatment i could feel the spot. that was a first. (i haven’t felt anything on the other side yet.)

only two more days and then i get a weekend to recover!

2nd day done!

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today went so quick. it helped that debra and i knew the drill about how to just walk in and scan in at radiation and go to the dressing room to wait. we were early for my 2pm appointment – like maybe 1:40-1:45 – but they took me back within 5 minutes. same tech team. still nice, though maybe a little less effusive than yesterday since it was now my second day. lol

i swear it went faster than yesterday… like, my actual time on the table and with the radiation on felt like less. but the techs said it was exactly the same as yesterday so i guess i’m just getting used to it or just wasn’t as nervous. it’s not quite 15 minutes on the table; it’s more like 10-12, with the first few minutes of them taking xrays. i can tell the difference in the sounds of the machines. but i was done and out of there by a few minutes past 2. literally a half an hour in and out.

i only took a half of an ativan today, to see the difference. much more manageable, i.e. it didn’t give me double vision. i’m not even sure i need to keep taking it from here on out.

i did once again smell chlorine, only when the radiation machine came on. it wasn’t as strong as yesterday but i smelled it. i’ll have to ask my radiation doc about that at my next check in. so weird.

other news to report: i did end up with a slight headache last night after my first treatment. the radiation can swell your brain so headaches are normal side effects and my radiation oncologist told me to let him know if i experienced any. so i sent him a note through the portal just to report that. i took an ibuprofen last night – what he suggested – and it seemed to work as i slept really well. but i did wake up with it again this morning, so i took more ibuprofen. i guess i should stock up on it. (i really really hate taking it cuz it’s so bad for your kidneys and i went through such a long time in my late 30s into my 40s taking SO MUCH ibuprofen because of my fibroids. but he said ibuprofen is much better at combatting inflammation than tylenol so it was his choice. so ibuprofen it is.)

i probably won’t keep writing each day unless something interesting or notable happens. maybe i’ll do an end of week, or weekend, recap. i dunno. i don’t want to overwhelm anyone with all these entries. i have much more to say about what a strange experience this is but i’ll hang on to that until i have a few more sessions under my belt. that’s all for today.

onward!

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.

oh goodness

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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.

my most recent MRI

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.

PET scan machine

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:

stock photo of what a radiation mask looks like in action

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.

9 months!

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yesterday marked 9 months since my brain surgery! in some ways it feels like a very distant memory; in others, it seems like it was yesterday.

overall, i am doing great. i am functioning more or less normally in most ways in my life, to the point that anyone who sees me out and about in the world would not ever know i had brain surgery unless i told them.

i am still struggling with a few “invisible” deficits (my throat is still a hot mess, between my frozen left vocal cord and my permanently swollen right tonsil – i sound like an old man coughing and clearing my throat all the time as these issues still make swallowing and breathing challenging at times) but they are minor in the grand scheme of things.

my eyesight has stabilized for the most part; i only have double vision first thing in the morning or really late at night when i’m really tired, on rare occasion. i still haven’t made it in to the eye doctor but hopefully a new prescription will resolve some of that.

my head – skull, really – still feels weird. waking up each morning is a daily reminder of the trauma i went through, as my head and neck always hurt for a little while – likely from the pressure having built up, from being flat all night – but once i’m up and about it goes away. from what i’m reading from others who’ve had this surgery, it really doesn’t ever get better. my head is going to feel strange for the rest of my life. i have accepted this and i try to not let it bother me but some days it’s hard to not dwell on it. it can be alarming.

my voice comes and goes. some days it is better than others. people still tell me it sounds like i’m getting closer and closer to my regular voice but to me it still sounds so strange and not me at all. the thing that bothers me most is not being able to speak loudly or yell. folks still have a hard time hearing me sometimes.

i would say my work capacity is at about maybe 2/3rds to 3/4ths of what i was able to do pre-surgery, with some limitations. (i think i learned last week that 10 days is maybe too long for overnight sitting without getting some kind of break. i managed, but i also got sick in the middle of the sit, likely due to being rundown from lack of sleep and just overdoing it.)

i might not ever get back that last 1/4 to 1/3 of my capacity, but that’s ok. i just have to adjust and be careful about taking care of myself. it’s a very strange realization to have that you might not quite be the same person you were before a major surgery, but i guess it’s a realization that many people have over the course of their lifetimes, about various kinds of surgery. and really, i’ve bounced back pretty well and i have a lot to be grateful for.

speaking of which, i’m in the middle of sending out handmade thank you cards to everyone who helped me through surgery in any way. it is a very long and laborious process, as my spreadsheet has 350+ people on it to thank! and there are a lot of folks i don’t have mailing addresses for. so if you are reading this and you don’t think i have your snail mail address, please do send it along. i will eventually ask you for it when i get to your name on my list but free free to volunteer it.

not much really to report otherwise. it’s starting to be the dead of summer here, mid july. we’ve been spared the extreme heat/humidity combo through most of june thanks to daily rain but it looks like it’s setting in now, and it is more draining to me than it ever was before. i’m grateful i only walk dogs half the day now because i don’t think i could handle much more. i literally have to come home and lie down in the AC every afternoon when i’m done to recuperate… and that’s from only 4 hours of walking.

i did manage to schedule some vacation for myself in august around my birthday though, and i’m greatly looking forward to it. i haven’t gotten out of town since december 2019 so vacation is long overdue. and great to have 10 days off work in august which is usually the most miserable month of the year.

so that’s it, that’s my update. hope everyone’s having a good summer!

how i’m doing

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this is a health-related post, so if you’ve come here looking for NA beer reviews, use the category links for that blog stream. i don’t have any big health updates, just a few observations and thoughts after a long day of jazz festing in place with friends yesterday.

i really struggled with my voice and my energy yesterday. we were outdoors, no masks cuz we were all fully vaccinated, with WWOZ blaring from a bluetooth speaker. there were ten or so of us, spread out, so when i spoke, there was enough going on that i had to try to project my voice across distance and over others who were having side conversations as well as the music. it was fine at first – it’s definitely better without the mask and my voice has gotten stronger over time – but the longer the day went on, the harder it became to do and the more strained my throat felt. and the softer and higher pitched my voice got. and the more exhausted i was.

trying to speak loud enough to be heard exerts a lot of energy. it also messes with my breathing, which also expends energy. (i never realized before surgery and my ensuing complications that your vocal folds have a lot to do with regulating your breath going in and out of your wind pipe. so talking a lot, when one side of your vocal cords is paralyzed, makes breathing harder while doing so.) and then there was the angelique kidjo dancing in the kitchen interlude which put almost 3000 steps onto my fitbit and had me breaking out in a sweat at one point. that was probably the last straw.

all of this lead to me rather abruptly running out of energy like a suddenly depleted battery in a child’s toy. i could feel myself waning and then i just hit a wall and i could no longer function. it wasn’t because i hadn’t slept the night before – i had. i’m not sick. and i had not over-eaten or under-eaten. and i certainly could not attribute it to alcohol as i was drinking NA beer all day (hat tip to rightside brewing’s citrus wheat!) along with some rosemint tea w/ginger ale. this is just how it is now. folks with chronic illness often use the “spoons” analogy and i’m reluctant to appropriate that because i don’t have a chronic illness but i do feel like i now understand that more than i ever did before. post-surgery, i don’t have as much energy as i use to just take for granted having; i now seem to really have a limit, and once that limit is used up, i’m done. period. no pushing through to carry on. i just need to lie down. done. like a toddler.

and it doesn’t take strenuous physical activity to get me there. apparently all it takes is six hours of socializing while seated, constant talking, and a few minutes of dancing in the kitchen.

don’t get me wrong – i’m so happy to be alive and to have recovered so well from a successful major surgery where they drilled into my skull, peeled back part of it, and removed an intruder from my brain stem. but i am not the person i was before and i’m still just getting used to the person i am now, the limitations this still-recuperating body has now.

i don’t share all this to be whining or complaining. i do so because i feel like in general i’ve put a happy face on all of my recovery, and when i see folks now who have only seen me sporadically or on social media, i think they think i’m totally back to “normal” and don’t realize i am still enduring struggles, however minor in the grand scheme of things. but they are still there, and account for my sometimes abrupt change of mood.

in many ways its convenient that that my surgery and recuperation has happened during the pandemic, when life has slowed down and there’s not as much activity going on. i’m not sure that i would actually make it through a normal day at jazzfest at the fairgrounds right now. here’s hoping i build my endurance back up before october when jazzfest hopefully returns.