18 down, 12 more to go

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waiting for my doc to arrive for our regular after-treatment appointment on mondays. i love the art on the wall!

so i’m halfway through week #4 out of 6. i had a really good easy weekend and got to see many friends – and the saints even won! barely. i was able to participate in no kings: vote early on saturday, until i hit a wall and had to go, but at least i was able to be out there for a while. i am really living for weekends right now cuz i get a break from the build up of the treatments and by sunday afternoon i’m almost feeling myself again.

yesterday and monday were ok, i wasn’t feeling too bad. i do always come home and rest after treatment and i think it helps reset my body so i feel like eating again later in the afternoon/evening. i’m almost always a little out of it and nauseated right after treatment. i haven’t been taking the zofran but the nausea has been manageable. monday i saw my doc who is just so lovely. we talked about my rough week last week and he encouraged me to go back to taking the zofran but pairing it with a stool softener so i don’t get constipated again. it’s no fun feeling nauseated but it’s even less fun dealing with constipation. so today when the nausea really ramped up this morning, i went ahead and went back on the zofran and am following his advice. hopefully i won’t have those problems again.

he is still happy with my progress and minor side effects and feels like this is what it will be like for the rest of the treatment, shouldn’t get any worse. no telling what might happen after treatment though as the cumulative effect kicks in during those weeks/months after and side effects might linger into the new year for me. i told him about the fatigue and he said that is completely normal, and he recommended i look into american ginseng which has been proven in studies to help with energy and combat the fatigue. i’ve been looking online but am a little overwhelmed by my choices. if anyone else has taken it and has any recommendations, let me know.

what else? i dunno. life feels like it’s fallen into a fairly predictable pattern right now. i get up in the morning, i feel mostly ok, i go to work and am able to get through dog walks and pet sits and garden/plant watering and whatever else i have on tap. i come home for a quick lunch and to change into my no-metal radiation clothes and then it’s down to UMC for treatment. my brain gets fried, i feel icky, i drive home and i lie down either in bed or on the sofa and fall asleep watching bad tv. (i’m not doing that today yet cuz i’m sitting here writing this but i will soon.) i get up and moving again around dinner time and eat something. my sweet community has stocked me with all kinds of food in the fridge and freezer – jen b sent me home with a bunch of freezer portions of soups and other goodies and elise dropped off the most delicious giant frittata with potatoes that i’m on my second day eating. jen f is bringing me jambalaya tonight for dinner! i have the kindest friends. so grateful for community. thank y’all.

i haven’t early voted yet but i do still plan on it. didn’t really want to deal with lines or all the hoopla of the first day so i’m waiting til maybe tomorrow or friday, or if i can’t make it happen in my schedule those days i’ll go early on saturday before the various second lines converge on city hall. i might just go to lake vista as i think it’s not as crowded. but i’ll get it done. did you know if you hold on to your “i voted” sticker featuring the fabulous artwork of celebrated new orleans artist terrence osborne you can trade it in for a poster of said artwork at his gallery? only november 2-5. what a cool thing to do! (he’s also selling the poster in case you wanna keep your sticker.) so yeah, go vote!

i guess that’s about it. i’m hanging in there. thank you to all who keep texting and calling to check in, and to those who’ve been sending surprise venmos and dropping off food. it is all helping. i feel well supported and loved and cared for. just gotta keep going. 12 more treatments! i can do it!

you can do it! cat – ©artbymags.com

halfway done!

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well it hasn’t been easy, but i’ve made it through 3 weeks of getting my brain fried daily and i’m still mostly functional. i am grateful. and really really relieved it’s the weekend and i get 2 days off. i need it.

this was a rough week. overall, i’m feeling the fatigue building up. i’m generally ok in the mornings when i wake up and through my morning pet schedule but after treatment i’m pretty low energy. i haven’t had any evening pet sits since i started cuz i cleared my schedule for the first few weeks on purpose since i didn’t know what to expect, but i do have a few cat sits coming up that will require evening visits so i hope i can rally the energy to do those. will have to maybe drink more coffee or try some other things to give me a late-day boost of energy.

side effect rundown: i haven’t really been having any headaches lately, which is good. i still have the sense of pressure changes, and though i’ve not really ever spoken about it, i have this sensation that is somewhere between tinnitus and feeling/hearing/being aware of the blood rushing through my veins in my head. i’m really not sure what it is and again i link it to pressure inside my skull, which makes sense. it ebbs and flows, sometimes it’s not there at all and sometimes it is more prominent. it’s something that’s been with me since brain surgery but i’m so used to it that i don’t usually notice it, unless it’s really bad. and since starting radiation, it’s much more noticeable. so i do think it has something to do with the swelling of my brain or how the blood is flowing or maybe it’s really just my ears? i don’t know. but it’s not painful, just distracting and a little alarming from time to time.

the nausea has been really on and off. i first took the zofran to see how it would do with the nausea on sunday, as i was headed to friends’ to watch the saints game and knew there would be food and just wanted to be able to enjoy myself. it worked, and i did. (i will note that sundays are always the BEST i’m gonna feel since it’s been 2 days since a treatment.) i felt fine. monday i took it again to see if it made a difference with my treatments, and again, it did. it helped me not have as stressful a stomach during the treatment, which helped me relax and therefore not dread the 3-4 minutes i’m on the table, which generally, i do. i saw the doc that day and he remarked that i was yawning a lot, so i do think the zofran makes me drowsy. (also a known side effect.) i took it again on tuesday, and not sure what was different, but it didn’t do as good a job with the nausea that day. i was pretty useless after my treatment for the rest of the day. i felt pretty awful.

wednesday when i woke up i realized, uh oh, i’m having all kinds of stomach cramps and i’m SUPER constipated, not something i ever deal with unless i’m on opioids for pain. it is a known side effect of zofran but i guess i didn’t realize just how quickly it might give me problems. so wednesday was kind of miserable. i did not take the zofran and haven’t again cuz i just wanted to get back to normal, which thankfully, i am almost. so i’ve been without zofran or ibuprofen for a few days while i tried to regulate.

yesterday the treatment went fine, no problem with nausea but i was pretty wiped out for the remainder of the day after treatment. today the nausea returned and it was pretty bad all morning. walking helps and i learned a few acupressure points to press on to help with the nausea and i think it actually worked as i got through my treatment ok. they’d moved my appointment up to 1:15 instead of 2 today so i had to really hustle through my dog schedule to get home to change and get there on time.

the biggest excitement of my week was that i got a parking spot in the oncology lot EVERY SINGLE DAY this week so i haven’t had to power walk from the parking garage or street parking on the other side of tulane. it really makes a big difference in my mindset going in. i hope i continue to have good parking luck. it just makes the whole experience faster and easier and less stressful.

i keep struggling for pictures to go with these posts to break up all this verbal diarrhea from me. so please enjoy my daily check-in station where i have to scan the barcode on my patient card so the radiation techs know that i’m there. then i go sit in the women’s dressing room which is right next door to the radiation room until they come get me. (most radiation patients have to change into a hospital gown so they don’t have any metal on them but i just change at home into clothes that work cuz i fucking hate those hospital gowns.) i am often the only one in the dressing room, which is kinda nice. i’ve gotten in the habit of doing a quick little meditation in there while i’m waiting which helps calm me down. there are one or two other women who must have appointments right before me that i sometimes see but they are not brain patients. they are getting some other body part radiated that takes a longer setup and time on the table and they all change into gowns. the techs are always happy to see me cuz i’m easy, in and out fast and apparently don’t give them any trouble. they love that i’m a dog walker and cat person and ask me all kinds of questions about their pets. lol

so yeah. 3 weeks of this shit down, 3 more weeks to go. i wish i had other people who’ve had brain radiation to talk to about this experience cuz it’s weird as fuck. it’s hard having the words to describe the level of dread i have going in there every day, how i brace my body lying on the table under the mask counting my breaths when i hear that fucking tone that indicates the radiation is flowing. i don’t understand others who say they went through this and didn’t feel anything, that it was easy. cuz while it’s not pain per se, it is very much not a pleasant feeling and i definitely feel something. but i’m having very minor side effects in the grand scheme of things (i mean, some people have seizures and get burnt scalps or sores inside their throats/sinuses) and i haven’t lost any hair yet (though there’s still time for that one) and most importantly, i’m still able to work. i wish i had more energy to be doing artwork as my pet schedule is kinda slow at the moment and i’m barely able to pay my usual bills but i am staying afloat. and thanks to all of you i’ve been able to stay current with all the nickel and dime medical bills that have started to come in.

OH and big thanks to derrick, my sweet friend who i met when he was manager at the american can building and whose dog jazz i walk sometimes – he made me huge container of yummy chicken soup that i’ve been eating on all week. and my dear friend audra made me this insanely delicious couscous veggie thing (i don’t know if it has a name) that i’ve also been eating on. it’s way healthier than anything i’d make for myself and my body is definitely craving that. i haven’t asked for food because i’m still perfectly functional and can forage for myself but if you know me, you know i don’t really love to cook and feeding myself is a struggle on even a good day. so these gifts of healthy, delicious food are so very appreciated.

have a good weekend everyone. i’m off to binge watch “the diplomat.”

happy craniversary to me!

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my calendar told me that today is my craniversary – that’s what folks who’ve had brain surgery call their craniotomy anniversary dates. and it’s worth noting and celebrating cuz it is no small thing to go through. for those who weren’t in my life 6 years ago, my surgery was 7-8 hours under anesthesia and i was in the hospital from tuesday through friday recovering. it was at west jeff hospital on october 13th, 2020, during the pandemic, in between a couple of hurricanes (delta and zeta) that affected south louisiana.

it’s kinda crazy thinking back to that time. october was past pandemic lockdown times but there wasn’t a vaccine yet and folks were still dying left and right. i remember being a bit scared of being in a hospital for several days not really able to wear a mask because of the surgery. but really, covid was the least of my worries at that moment. though the surgery was a complete success, i’d come out of it with some swallowing and speaking issues that were very challenging, a droopy right eye and horrible double vision, not to mention the 16 staples holding my skull together and the bruising and swelling everywhere. (i’ll spare everyone the photo here on this page but if you wanna see, you can click the link.)

i just spent some time reading back over all my brain saga entries here on this site and looking back through my instagram photos and my mealtrain page, which we also used for updates before, during and after surgery for a while. it seems i only started putting my thoughts here on this blog 3 months after surgery; before that it was all mealtrain and facebook, which is much harder to go back through. if you wanna have a sense of what that time was like for me, feel free to use the above links.

anyways. so today i celebrate 6 years post-surgery how? with my 12th radiation appointment! lol i guess my brain likes the month of october to get worked on. week 3 is moving along. sunday and yesterday i tried out the zofran to see how it would work on my nausea. sunday it was great – helped me feel good enough to watch the awful saints game with friends. yesterday it worked pretty well, even through treatment – i did not walk out of there feeling bad which lately i have been. but i did note it made me very drowsy. today, it didn’t work as well. the directions say to take it 1-2 hours before treatment if that’s the time you experience the worst side effects – and it is – so i’ve been taking it around 11-11:30am so it’s kicked in plenty by the time i’m down at UMC for my treatment. (though my appointment is for 2pm i am often there early and they take me back early; how early depends on whether there is an open parking spot in the oncology lot. and this week i’ve been lucky!) not sure what was different between yesterday and today but i had to lay down when i got home after radiation today and rest for a bit til the nausea wave subsided. and a few hours later, my stomach is still a little bit off. it’s supposed to last 8 hours so i know it hasn’t worn off yet. just didn’t work as well today.

but it’s fine. it’s not the level of nausea where you actually want to (or do) throw up. it’s just that annoying level of unease that makes you feel icky and like not doing anything. thankfully since i got my taxes done late last night (woohoo!), i don’t really have anything i need to be doing. i wanted to work on some button designs for saturday – it’s no kings: vote early day and i’ll be participating with my pop-up protest folks at the circle on esplanade from 3-5pm as part of new orleans activities for the day. we’ll have 7 simultaneous locations around the city doing visibility actions to encourage early voting, which here in louisiana starts next tuesday october 20th and runs for a week, excluding sunday. hoping i actually feel well enough to be out there but the weather is supposed to be fall-like with highs in the 70s so it shouldn’t be too taxing on me to go wave some signs and hand out some flyers and buttons for a few hours. if i manage to get the buttons made. stop by and say hello if you are out and about on saturday or join us!

two out of six weeks DONE!

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i am glad to be done with this week and to have two days to rest and not have to get my brain fried. this was a harder week, or at least the end of it was.

i have been fighting nausea all day since i woke up. it comes and goes but it’s been a bit more intense when it is there. still hasn’t really affected my appetite – in fact somehow eating seems to make it feel better – but i have felt pretty crappy all morning while working. i just got back from my treatment and was hoping to pick up the anti-nausea meds my doc called in for me at cvs on my way home but they weren’t ready yet. i am also dog sitting for debra and karen who are vending at blues and bbq fest and cat sitting for my neighbor across the street, so i’ll have to go back out later anyways and i can grab it then.

the power went out at my place shortly before i left to go downtown. apparently a lot of midcity lost power i guess related to our high winds today and when i got to the hospital, they were running late because the power had flicked on and off a few times there, triggering the backup generators, so it caused some chaos. this happened before i got there thankfully and the power was back on but i had to wait a little longer than usual in the dressing room for my treatment. there was a poor woman in there also waiting who told me her whole story – she has lung cancer, which she’d already beaten once 7 years ago, but now it’s back in a different location and she’s getting chemo and radiation. she’d finished her chemo and then they send her to radiation after. she was groaning a lot, i guess in pain or some level of discomfort. i felt bad for her. they ended up taking me back before her, even though she was in the dressing room waiting before i got there. (there are two radiation rooms so i’m imagining she was going to the other one.)

so yeah. the longer i go through this, the more grateful i am that my actual time on the table with radiation pumping into me is only 3-4 minutes. the lady in the waiting room said her radiation treatments were like 12-15 minutes long. there is no way i could sit still that long in that mask so definitely grateful for that. but i am becoming more sensitive i think to the treatment. i really don’t know how to describe the feeling that comes over me when i hear the machine turn on and the beam is engaging with my head. it’s sort of like plunging into water, going below the surface, the pressure change that happens in your head. it’s a little uncomfortable but not really painful, just weird. it’s a wave of discomfort that washes over me but then i adjust and it’s ok for the rest of the time, as i count my breaths til it ends.

hope everyone has a great weekend! and if you are in the path of the storm that thankfully did not come to us, i hope you stay safe.

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.