one and DONE!

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that is what my neuro oncologist said about radiation treatment, in general – that it was a one and done situation. that i should never have to have radiation therapy again!! (yes it’s more like 30 and done but that isn’t as catchy.) if radiation works, and the tumors stop growing, then i won’t have to have any more treatment and just some occasional monitoring. if it doesn’t work, then my only options – at least for the really big one – will be medical intervention which generally means clinical trials for chemo-like drugs. we haven’t really discussed all that so i don’t know details and the hope is that we don’t have to. both my neuro oncologist and my radiation oncologist believed, going in to it, that radiation would be successful in stopping the growth and potentially even shrinking it/them a bit.

so yeah. for now i am saying i’m done.

i was too excited afterwards and couldn’t focus enough to write a full blog entry on friday or even yesterday about it so i just posted to social media about ringing the bell and my final day. most of you have probably already seen it. but i’ll go ahead and summarize here since this is where i’ve been writing about my entire journey.

i spent the day friday feeling not great, as i’d been titrating down on the steroids and was on my last .5 mg of them. debra went with me to my final treatment. we got down there a little early, thankfully got a parking spot in the oncology lot, and she kept telling everyone along our path into the building and into oncologoy that it was my last day and that i got to ring the bell. it was cute. we were both excited.

we sat in the dressing room for a minute but they came to get me and i asked if debra could come in and take some pictures, which they were fine with. so i went in and they grabbed my mask so we could take some photos of me holding the mask in front of the varian edge radiation machine, which is a combo of CT scanner and radiation/radiosurgery machine. (apparently it can do all kinds of things including my IMRT.)

and then the techs actually suggested we take some photos of them snapping me into the mask and on the table, before everyone leaves the room for my actual treatment. (i had meant all along since i started treatment to prop my camera up and take some video of what it looked like for me to get my treatment, which the techs said would be ok, but it just never happened. i was always in just too much of a hurry to get it over with and get out of there.)

so they snapped me in on the table and debra took the below money shot of my head in the mask, which is admittedly hard for me to look at. yes, i did this every day for 30 days for like 5 minutes at a time, the actual time of my treatment.

after the photo shoot and i’m ready on the table, snapped down, everyone leaves the room. there’s a super thick wall and door between the room where the machine is and the command center, as i refer to it, where all the techs operate the machine and oversee the procedure. i somehow neglected to ever take a picture of it but i was given a tour one day and shown the pre-radiation scans that were done every day, a 3d representation of my brain and tumors. it was wild to look at.

debra went back to the dressing room to wait, the techs cleared the room, i had my quick treatment, and i walked out mask in hand to the bell in the hallway. everyone working that day followed and gathered around. debra was taking video but as i’ve reviewed it, it’s long and needs editing and really, this (above, a screenshot from the video) is the moment that matters: when i actually rang the fucking bell. at first i was a little timid and the techs were all like, LOUDER!! so then i really laid into it! lol

i don’t really ever enjoy being on video or having attention drawn to me so it was awkward, especially as i’d just gotten off the table and my head was spinning and i can only see out of one eye, hear out of one ear, etc etc. but everyone on staff who had been caring for me for 30 days, except my doctor (cuz he’s not at UMC on fridays), was there to cheer me on. it was sweet.

i kept saying “i hope i never have to come back here again,” meaning, for radiation. but i was forgetting that it’s the same machine that does CT scans and the same department and area where i get my MRIs if i get them at UMC. and whenever i see my radiation oncologist, i will see him there. so i will be seeing them again. just hopefully NOT for radiation. but as i said that for like the 5th time, cuz i’m nervous and babbling, one of the techs handed me an envelope that had my follow up appointment with my doc in december on it, saying “about that….” ha. we had a good laugh.

so yeah. it’s kinda weird being a not-cancer radiation patient and getting to ring the bell, cuz it’s a ritual associated with cancer treatment. and i don’t have cancer. but meningiomas are so weird, they are technically benign (most of them) but they do grow, mostly much slower over a lifetime so not like cancer but growing nonetheless. which is why they need this type of treatment cuz you just can’t let tumors keep growing indefinitely in a tiny confined space like the skull.

debra and i celebrated by getting a snoball on the way home from pandora’s and sitting in the park and then my front porch to eat them. i spent the rest of the night at home on the sofa, feeling progressively worse. i slept ok but not enough, and pretty much didn’t move off the sofa all day yesterday. it was a gorgeous day outside but i just felt awful, mostly my head hurting and my stomach being off. i slept better last night and actually puttered around the studio working on some paintings for a little bit this morning before starting to feel awful again. but i showered and made myself go over to jen and mary ann’s to watch the saint’s game, figuring i could leave at halftime if i continued to feel bad.

it was a crazy game which i guess took my mind off how bad i felt. jen made gumbo and wings and eating actually helped tamp down the nausea, so i made it through that long-ass game and overtime and thank goddess we won after all that! so i had a few hours of feeling ok and got to enjoy a rare saints win. but now i’m back home and it’s dark already at 5:30pm and i feel pretty shitty again. maybe i’ll just get in bed and see if i can doze off w/the tv on.

several of you have messaged or called wanting to celebrate with me and i’m sorry i don’t really feel up to it quite yet. give me a week or two and maybe i’ll be in a better place. gosh i hope i will.

i can’t thank everyone enough who’s been reading along, checking in on me, bringing me food, sending me gift certificates and money, and offering in so many ways to help. it’s made this possible and bearable. hopefully i’m on the way back to something close to my normal soon. and i will look forward to many celebrations of still being alive to see another day.

today is fucking hard

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i guess i have reached the point in my treatment where everything is breaking down. i just have to hold on for 2 more treatments. i know i can do it but damn, today is a real low point.

the radiation is piling up in my system. they told me “it’s cumulative” but i just didn’t really understand the depth of what that meant. my body’s ability to handle this level of abuse seems to be pretty well gone. every side effect is hitting me all at once and plenty of new ones too. (jaw popping! taste buds dead! itchy scalp!) i’m weaning off the steroids that have been boosting me while making me shouty, bouncing off the walls and having heart palpitations, which is both a good and a bad thing at the same time because it no longer is helping much with the side effects it was helping with originally, like my vision issues. i’m down to a half mg a day and have been told to stop on saturday.

and apparently – who knew – only getting a few hours sleep after WAY overdoing it yesterday with election day sign waving antics and picking up a mutual aid delivery and working and then watching the returns til way too late last night was a recipe for disaster today. it seems to have really affected my hormones/emotions and left me with no filter, no control, uncontrollable crying jags, a quick temper, less than zero energy, fucked up my eyesight to a degree that is almost comical that i haven’t injured myself today, and also i can’t sleep. i want to nap so bad and i can’t fall asleep cuz i’m so agitated and exhausted and just unsettled all the time. my head feels like it’s buzzing. and stuffed with cotton balls. at the same time.

i’m not gonna spend a lot of time talking about yesterday and the elections/returns last night (though yay, overall!) but it was both a super high nationally and a disappointing low locally/statewide. so again, emotions all over the place. i couldn’t stop watching last night even from the bed. it was well past 1am when i finally turned the tv off and the cats started trying to wake me up around 5ish though i didn’t get out of bed til 6 – not sure if i slept in between or not. but the combo of all the feels about how the elections actually went with the lack of sleep and everything else has really had me emo today, on and off.

i worked a bit, canceled one appointment cuz the client was wanting to reschedule and it just didn’t work with my treatment time, picked up more mutual aid stuff at zeus’ (my car is now full and smells like a nauseating combo of cleaning products and partially open cheap dry dog food until i can deliver it) and then tried to come home to nap but was not able to do so.

and then it was time to go down to UMC. i wasn’t keeping very good track of time and set out a little late, which always puts me in the uncomfortable position of worrying about whether there will be a parking spot in the oncology parking lot or if i’ll have to drive further away to park and then hoof it back over there to get to my appointment on time. so i show up stressed. there wasn’t really a spot though there are these 2 spots at the very interior end of the super small lot that are not really spots but people park in them anyway cuz most folks who use it are not there for very long and if you have a pass they generally leave you alone. so as i was pulling in, someone was pulling out of one those spots and it was the only one available so i pulled in and made sure i wasn’t parked in a way that would keep the cars on any side of me from exiting or entering – both ended up having nice chatty black men sitting in them waiting for folks who were inside and they both assured me there was no problem with them getting around my car. so i parked, locked up and started walking towards the entrance… when a security guard from INSIDE came out the front door and told me i couldn’t park there. so i asked why not, because people always park there and i have a pass and i’m only gonna be there for 20 minutes for my radiation treatment and it was the only spot open so if i can’t park there i will be late to my appointment and will have to walk a long distance, blah blah blah.

he was not moved and started yelling at me saying he’d already called enforcement to come tow/boot cars and mine would be impounded by the time i got done so i better go move it or else. so of course in my already compromised state, i burst into tears and started ranting and raving. i turned around and went back to my car and told the nice men i’d talked to that i had to move my car cuz the asshole security guard had called enforcement on me. they were very sweet and sympathetic but i was sobbing uncontrollably at that point and angry. and just as i got to my car i saw the enforcement vehicle pull up which was not a tow truck but just a parking cop in a compact car who got out and told me i couldn’t park there. so then, crying, i told him what had just happened and the guys in the cars i’d been talking to both interjected on my behalf and the parking cop assessed the situation, looking around the fully parked up lot, and then said, who told you you couldn’t park there? and i motioned to the security guard inside who was still standing in the doorway. and the parking cop said, you have a pass? you’re a patient? you can park there. i’m the one who determines if you can park there, not them, and it’s ok, as long as these cars can get out and others can get into spots around you. he wasn’t terribly sympathetic to my state of mind and kept talking over me and not letting me actually answer the questions he was asking but in the end he let me stay there.

so now i’m a fucking crying mess who has made a scene and can’t stop crying and is late and has to go into the building and through the security stop at the front door which is where that asshole security guard was working. (it’s always a different security guard every day at that metal detector station and i’d never seen this guy before so hopefully i won’t ever see him again.) i handed him my metal stuff and walked through without saying a thing cuz i was worried i’d tell him off and get detained or something and made my way into the radiation area and checked in. i was hoping i’d have a minute to meditate and calm myself down before anyone saw me… but no, the dressing room was COMPLETELY FUCKING FULL OF AN ENTIRE FAMILY waiting for their loved one who was finishing their radiation treatment today and was gonna ring the bell. so it was all festive and loud and crowded and did i mention it’s the WOMEN’S dressing room and half this family was men? ugh. not conducive to meditating or calming down. i was lucky to find a seat to even sit. still crying.

and then the techs started coming in to try to grab me but saw i was crying and then ya know fawned all over me trying to “help” but i just asked for a few minutes. and thankfully then the man’s family left cuz he was all finished up and they had their bell ringing out in the hallway and the dressing room emptied out except one woman who’s been there a bunch and is getting radiated for lung cancer (cuz we’ve talked in the past but today she was engrossed in her phone in a recipe for turkey gumbo that she was listening to loudly) but at least it got kinda quiet. and the techs gave me a minute. so i was able to collect myself.

they came back and got me and i said let’s just do this, i don’t want to talk about it, cuz i was worried i’d just lose it again. laying down on the table and having the mask strapped on was actually calming for once though it was really hard to not fall back into sobbing while the treatment was happening. but i made it through, counting my breaths.

afterwards i told the techs the short version and they were really sweet and apologetic and i’m sure they’ve seen so much worse. the funny part was there was a student sitting in today who’d been on duty for me before who apparently “chose” me as the time period she wanted to be there cuz i’m easy and pleasant to deal with (sorry about today!) but it was all good. we all acknowledged i only have 2 more left and on friday I AM THE ONE WHO GETS TO RING THE BELL!

that was a long and dumb story but i just needed to purge it. maybe now i can go nap. hopefully tomorrow will be a better day. thanks for reading y’all, and for all the ways all of you keep showing up for me and helping me through this. the money, the food, the calls/texts/messages, and drop-ins, the offers for all kinds of help i can’t seem to take, all of it. it’s all been very sweet and made me feel less alone in this. i really couldn’t be doing this without you. or would at least be a whole lot MORE miserable than i feel today.

2.more.days. i can do it.

love y’all.

one more week to go

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here we are on the weekend. last week was a weird one. started off bad on monday, got steroids on tuesday and started taking them, and then the rest of the week had good energy and fewer inflammation related side effected for at least half the day until i went to my treatments and got zapped again. and then i’d feel weird, like affected by the radiation, but still kinda wired from the steroids. afternoons and evenings were still less energy and not great. i’ve had evening cat sit appointments so i’ve had to go out and i’ve managed them ok but the double vision returns as the day goes on and i had a few kinda challenging drives home in the dark after working. and then when i am laying in bed at night, trying to go to sleep, i can still feel my heart racing and everything pumping in my head, so it’s been hard to fall asleep early. most nights i haven’t managed to drift off til past 11 even if i get in the bed at 9 and the cats are still waking me between 4:30-5:30am for their breakfast, so not much sleep. i try to go back to sleep after i feed them but it often doesn’t work; i’m awake. my right ear has also been intermittently blocked up and my hearing has been affected and my jaw is popping (which has never happened before) and sometimes my scalp/head hurts a little on the right side, so i’ve been having to sleep on the other side.

oh, and i forgot to mention – i noticed midweek that i now have a bit of a hair loss stripe behind my right ear, where my glasses arm ends extending towards the back of my head. it’s not awful but seems to be growing so it will be interesting to see just how much falls out. it’s still mostly covered if i wear a ball cap and i don’t see anything corresponding on the other side (yet) but who knows. my hair in general seems thinner, dryer, more chaotic and i have been noticing more hair coming out when i shower and wash my hair than normal. i also seem to have 2 red dots which must be where the radiation beam is going in or focusing on longer. they aren’t sore yet but that might be coming in the last 5 days.

so yeah, the radiation journey continues. i will definitely celebrate not having to go down to UMC daily after next friday cuz i have really come to dread it every afternoon and have to literally meditate for a few minutes before going in to calm myself down but sadly it won’t be the end of dealing with the side effects. i have a friend i made back in 2020 who had surgery around the same time as me and we’ve kinda kept up with each other and she had radiation over the summer ending in mid august i think and she STILL has all her side effects. that’s a couple months!! so just because i won’t be getting zapped every day doesn’t mean i won’t still be suffering. ugh.

no trick or treating for me tonight. in fact i think i’m about to go try to nap for a bit since it’s raining and i went late to the cat i’m caring for this morning so i have to go a little later tonight for his dinner. hopefully the rain will let up by then so i don’t have to drive in it. but my belly is full of ethiopian food and i still have enough leftover for either dinner later or a meal tomorrow, thanks to sweet friends. and i’m feeling hopeful about the election due to the groundswell of organizing i see happening all over this state. i wish i had the energy to do more myself but social media posting and texting friends is about all i can manage – so if you get a text from me don’t be upset. i’m just trying to do my part to make sure everyone has voted or has a plan to do so on tuesday. i’d love for our state to shock the nation and all the stupid fucking pundits who don’t take us seriously.

i’ll leave you with another cool painting i saw at UMC as i was leaving on friday. still no QR codes to identify the artist. oh well. it made me smile, which is a nice way to leave UMC after treatment.

hump day – 7 more to go!

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i seem to be in a rhythm of writing on wednesdays and then on the weekends. so it’s hump day and here i am.

i just got back from #23/30. i am feeling considerably better since i started taking the steroids yesterday morning, though it only lasts until i go in for my treatment and then most of the energy bestowed on me by low-dose (4mg daily this week, 2mg daily next week) dexamethasone dissipates. the cumulative effect of the radiation treatments is really in action right now and i feel every session. next week will suck, i imagine. but the steroids did give me enough energy yesterday to make it to a midday early voting rally to see pete buttigieg stump for jamie davis so for that i will be grateful. and so far, i have been able to continue working and even do evening visits this week.

mayor pete stopped in to the last day of early voting rally at duncan plaza in front of city hall yesterday

the main reason my doc put me on the steroids wasn’t even for energy, though. it was to help with the double vision – caused by the inflammation of my brain – which had gotten really bad and was almost at the point of scaring me while driving. the steroids have helped with this a lot. i also don’t have as much nausea or stomach gas, though perhaps it’s the pepsid i’ve started taking that’s at least helping with the latter. but the nausea has not been bad since i started the steroids. let’s hope that continues.

i only have enough steroid pills for this week and next week. after that i think i will be taking boswellia (frankincense), which my doc also suggested as it’s been proven in studies to help a lot with inflammation. sadly because it is a supplement and not a western medicine, insurance will not cover that and it’s kinda pricey so i’m waiting to buy it until closer to the end of the steroids when hopefully i have the money. i have to take a lot of it, i.e. like 9 pills a day, so i will go through bottles quickly. hopefully it agrees with my system and helps stave off the inflammation for at least a few weeks/months after radiation ends, because i’ve been told the side effects will continue to bother me for quite a while until it works it’s way out of my system. and with the holidays on the horizon, i need to be able to work and to get art together for holiday sales. so crossing fingers it works on me.

random art that i enjoy daily on the walls of the radiation department

i love that UMC is covered in art. every day i’m there i notice a different piece on the walls as i walk around, many of which i really like. i do wish they had cards next to them to indicate who made them and titles (they don’t – there’s supposed to be QR codes but i don’t see any) because many artists don’t sign their work on the front or if they do you can’t read it. so i have no idea whose work i am admiring. you can read about the process of curating the collection at UMC here. most of the art is from louisiana artists with a couple of big sculptural commissions for the bigger spaces and outdoors through the Percent for Art program.

but i digress. today some of the pending charges for my radiation treatments started showing up on mychart. they are still waiting on the insurance to say how much they will cover, and i will be hopeful, cuz the hospital charge alone is more than $20k for the 30 days of treatment. but this same ACA insurance plan (LA Blue/BCBS) did really well for me during my brain surgery and so far it’s covered most of my doctor’s visits and scans leading up to radiation. i have had a never-ending stream of $15 here, $30 there kinda charges since august from various techs, tests and doctor visits, as my portion of what i have to pay. i think so far i’ve paid out of pocket about $400 but it’s been a little at a time so easier to do. y’all have covered all of that with your kind donations and the rest of what you’ve given me has helped me bridge the shortfall i’ve had with my regular bills/income ratio. business is still slow and though i really haven’t turned down but a few jobs because of timing and not knowing how radiation was going to affect me, i’m simply not making enough to make ends meet right now. usually i’d be supplementing with art, tshirt and/or sticker sales but i haven’t had the energy. i’m hoping to get a bunch of recent stuff posted online this weekend for a flash sale cuz rent is due soon and most of my bills are in the first half of the month. but i guess we’ll see if i have the energy.

i do want to continue to thank folks for bringing me food and gift certificates for grocery stores and delivery services. this helps more than i can say, both in convenience and keeping me fed healthy, and also financially not having to spend as much money on food. i thank y’all. i couldn’t be getting through this without y’all.

so glad to be in the homestretch now!!

starting my 5th week…

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hi friends. i’ve meant to write more but i just didn’t get to it this weekend. i just got home a bit ago from treatment #21/30 and my weekly doctor’s appointment. i had a lot of side effects to report and ask about this time. i’m really feeling the cumulative effect starting to take shape.

headaches haven’t been too bad but do require the occasional ibuprofen. nausea has been constant and the zofran is only helping about half the time. fun new side effects include that i seem to have developed reflux or some sort of gassy stomach situation, as i’m burping 24/7 and it’s really unpleasant. doc doesn’t think it’s radiation related but maybe a reaction to the zofran and ibuprofen or combo – ibuprofen can of course mess with your stomach lining and i don’t usually take it very often. so i guess it could be that. he wants me to start taking pepsid. i also noticed yesterday and especially last night when driving in the dark that my eye’s aren’t working great together – meaning double vision – and the right eye is super droopy. he’s given me a script for some low-grade steroids to help with the brain swelling which could be responsible for the eye stuff. i hate taking steroids but i’m willing to try it to see if it will help. it was kinda scary driving in the dark last night like that but i just had to revert to my one-eyed driving techniques that i got good at after surgery when this bothered me before. (it’s not as bad in the daytime as it is at night.)

he also recommended boswellia extract (aka frankincense) which apparently has been proven in studies to help with the swelling. i love that he recommends natural/alternative medicines.

i also told him my skin seems to be a little more fragile/sensitive on my face and ears, as i’ve noticed a few sores here and there that are unusual. he didn’t think the radiation should be causing that but said it’s possible. i told him i’m using aquaphor on them and that seems to be working and he said great. not much else i can do about that.

i have to run out to pick up stuff at the pharmacy and then go do 2 cat sits before attending the new orleans film fest screening of the scrim documentary at the broadside tonight, which starts at 7. busy night, and i’m moving slow, so trying to give myself ample time.

i’ll try to write more soon. thank you to all who’ve been bringing me food, giving me grocery and delivery gift cards and just checking on me. i really appreciate it. it helps me feel not so alone in all this and is definitely helping me eat better than i normally would!

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 and dave are 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!