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!
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.
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.
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.
i’m trying to do a better job at updating on my various blogs. (i have 3 – this one, my art blog and my pet biz blog which is really just a website for my business but i do sometimes post little updates about my availability/openings.) so here i am. this will be a long and rambling post that will probably only be interesting to me but hi, thanks for reading, if you are.
i posted on my art instagram yesterday a pic of my monthly calendars for january and february that are taped to my wall in my studio, where i mark each day that i spend time in the studio – at least 20-30 minutes – creating, working on art, even writing. just doing something to keep the creative juices moving. it feels rather ridiculous that i need to do this but it’s one of the little accountability tricks (hello adhd!) i’ve learned over the years that really helps me follow through and stick with something. kinda like making lists and then crossing things off. there’s a sense of accomplishment that rewards, similar to that little dopamine hit you get when your social media post gets a “like.” but instead of looking outward for my pat on the back, i get it from myself every day that i’m able to mark an “x” or circle the date on the calendar. and then at the end of the month i can see that i really have been showing up for myself and doing the work, even if i don’t have any finished work or sold items to show for it. and it counters that limiting belief that tells me repeatedly that i “don’t have time” to make art. because i do; i just need to claim it. prioritize it. do it.
this was one of my new year’s intentions for 2023. well really i started on this one back in the fall when i started taking online artclasses to get myself out of a blocked/bored period, during which i tend to spiral downward into the “i suck at being an artist” place and then i don’t make any art at all for months or sometimes years. i’m trying to reprogram my brain, reframe my negative thoughts, and at the same time develop a new habit – that of making art every day (more or less). i’d like to be able to say that i truly have an art practice, which is hard to do when you skip months and years and never really work through all the ideas in your head that you want to create. and, well, something about middle age, being 55, that makes me realize if i don’t do it now, when the hell do i think i’m gonna do it? time’s a tickin’. i’m not getting any younger. (plus i have this fantasy – or is it an intention? – that my retirement plan is to be a successful working artist that can support myself after i’ve gotten to the point that i can’t or don’t want to walk dogs anymore.)
so yeah. not new year’s resolutions, cuz i don’t believe in that. that’s just setting yourself up for failure. but intentions at least name where you want to go and how you want to get there. it’s good to put it out into the universe and to tell yourself. to visualize. and then to be gentle and kind to yourself when you don’t manage to do it every single day or have natural breaks due to life, work or other circumstances. but to keep going. keep showing up.
the other intention i put out there to the universe and claimed for myself was to try to exercise more. i know a lot of you think i get plenty of exercise because i walk dogs for a living. and i do when my business is really busy – i can get up to 15-20K steps a day, which is a lot. but right now my business is really slow and i’m not even getting to 5K a day some days. and also, as good as walking is as an exercise, i’m not really doing it aerobically all day. some dog clients walk fast and i do get my heart rate up for 20 minutes at a time, but most of my dog clients are slow meanderers. i’m still moving but the health benefit is probably negligible.
so while in my process of sorting through my friend nita’s estate/house full of things, i kept eyeing this fold-up exercise bike that she bought a few years ago for physical therapy after one of her stints in rehab. she used it for a little while but then it just sat. and over the months as people have come and gone claiming things from her house, no one took the bike. i didn’t realize at first that it folded up to take up less space and i originally thought i wouldn’t have somewhere to put it in my house and it would be hard to move, to fit in my car. but in january, as things were winding down at her place, i found the owner’s manual and realized how to fold it vertically and voila, i knew where i could store it when not in use in my house. and it would fit easily in my car. it kinda seemed perfect. so i took it.
me and bike riding go way back. i’ve always had a bike. as a kid all through elementary and junior high, i rode my bike to school. it was over a mile each way. and for much of my life here in new orleans i was without a car, so my bike was my main means of travel through my 20s and 30s, getting me to the bank, the grocery, the post office, etc. all those years i worked for nita over on algiers point, i rode down canal street from midcity and took the ferry over on my bike. when hurricane katrina hit, i actually had 2 bikes, but didn’t think to put them upstairs when i evacuated and they drowned downstairs in the entryway to my dad’s apartment that got 4 feet of water. i did get a bike in louisville that i rode some, but my 40s and 50s has had me sharing or owning scooters and cars so bikes have taken a back seat and rarely used. (i do still own two regular bikes that are in the shed gathering dust.)
even when i owned a real bike and used it, i have had recumbent exercise bikes in my home. i had one on iberville pre-katrina and used it to help me lose a bunch of weight during one particular time in my 30s. and then when i moved into my current house, i got another recumbent bike that mostly lived out on the back porch since i didn’t have anywhere to put it inside. i used it off and on until a family of wasps decided it was a great place to build a nest, and the elements really messed with the electronic display on it as well. i eventually dragged it to the curb. so it’s been a while since i have had an exercise bike but it’s what i think of first as a home exercise method for burning calories, moving muscles and getting my blood circulating better.
all of this is prelude to saying that grabbing this bike from nita’s was a good way to work on my intention of moving more. and the first two weeks i had it i used it almost every day. the first few days were really hard and then it got a little easier. i started with 10 minutes, like i had when i was in physical therapy, and worked up to 15 but that’s where i stopped. it’s been a few weeks since i got on it but i woke up this morning and hopped on before i even had my coffee and did 15 while watching an art instruction video on my phone. (it has a little shelf where you can position your phone or ipad to watch things. i also pull it into the living room so sometimes i watch tv.) this morning it wasn’t hard at all and i barely broke a sweat, my heart rate not even reaching 115. which is great, cuz one day i was having a really hard time, hadn’t slept much the night before, and could only do 10 minutes and my heart rate got over 140 and i thought i might have a heart attack!
anyways. i’m thinking of making a little accountability calendar to keep near the bike to reward myself every day that i use it by marking it off. and maybe recording how long i rode it. i know i feel better when i do even 10-15 minutes, and i’d like to work up to 20-30 and then maybe faster or increase the difficulty/tension. all of this is about trying to regulate my blood pressure and cholesterol better, which i know exercise helps. i used to like going for long walks but since i walk for a living sometimes it’s a hard sell to go walk more – my feet always end up hurting/swelling – so the bike riding seems like a better option for me. it’s not a recumbent bike, it’s an upright, but it has a big padded seat and nothing hurts when i ride it so it feels like a pure heart and muscle workout.
what else? what other intentions did i have for this new year? well, a lot of it involves my art and the business of art, which i have not focused on at all for years now. the irs is about to tell me that my art biz is just a hobby cuz i’m not showing a profit on it like i did for many years. and really, i’d love to be making more money from my art right now, especially since the pet biz is slow. but i’m also in this exploration and education phase with my art where i’m trying not to think first about making something to sell but instead to make something to express, to just create, to enjoy and explore new processes. so those things are at odds and so far i haven’t made any motions to sell anything i’ve been making over the past 6 months, mostly cuz nothing feels like a finished product. and that is by design!
so i’m wrestling with that inside my head and meanwhile my bank account is dwindling precariously low and if i don’t pick up some new clients or figure out something to sell soon i’m gonna be living off my credit cards and raiding my hurricane emergency fund. i guess we’ll see what happens. it’s interesting for me to note that i’m not really freaking out about this. i know my pet biz ebbs and flows – it’s just like this sometimes and the new clients always appear eventually, usually after mardi gras. money always seems to fall out of the sky for me at just the right moment – the abundance of the universe is real. but i am certainly at a low point right now. i just have to trust that it will resolve and keep doing what i’m doing, working on myself, my health, my art practice, and putting good vibes out into the universe.
i guess that’s all for now. did you make any new year’s resolutions or intentions? how are they going for you? i like it when i get comments on this blog cuz it lets me know someone is reading it besides me.
oh, and happy mardi gras to all those who celebrate!
it’s been a long time since I wrote in this blog. i’m still drinking NA beer and trying out new ones all the time but i guess my fascination with writing reviews about each one has dwindled. (i’ll try to get back to that this year.)
nothing remarkable has been going on with my health, which is of course good news. i meant to write a one-year craniversary post in october but never did. (i posted on facebook about it instead.)
i did start writing a hurricane ida post with a play-by-play from my vantage point inside my house but never finished it, so it sits in my drafts. i think i will keep it there as more of a journal entry for myself. it was quite an experience and the ensuing few months with a partially collapsed shed in my backyard that i looked at every day took a toll on my mental health, but i seem to have made it through. it took a while but i did get a brand new shed and things got back to normal more or less and life just went on and i didn’t write about any of it here on this blog.
and now it’s new year’s day 2022. i first started writing this post on december 17th but didn’t finish it then. it was a week where i began the first two of many holiday cat sits while still having my full dog walking schedule. the following week i started an 8-day overnight dog sit, hopefully the last one of those i’ll ever do. (i will continue dog walking and cat sitting and doing any other petsitting which does not require me to spend the night.) there were a few more cat sits sprinkled in there. work was very hectic for those few weeks, but it was great for my bank account and now i can start to pay down the credit card i filled up with all the vet bills for sticker and stencil’s various ailments of the past several months. (they are both doing better now, thank goodness.)
if you know me then you know i don’t really love christmas. it’s not that i hate it but i think the combo of having a job that is peak busy during the holidays and being single/living alone makes it challenging. in the past i have enjoyed decorating for the holidays but for the 11 years i have lived in this tiny one bedroom rear apartment that doesn’t face the street and has no interior doors or way to keep a christmas tree away from naughty cats, i have not decorated. no one ever comes to my house so no one but me would see it, and during the holiday time i’m hardly in my house because of work so it seems a waste of time, energy and money. i enjoy other people’s decorations though. and i try to get my little rituals in – christmas eve for a few hours with one group of friends, and christmas day for a few hours with another – but aside from that, it’s just a whirlwind of a month of working where i try my best to not get sick.
sadly, i was not successful with that this year. i got really run down from my work schedule (late nights, early mornings, bad sleep, poor eating) and it remains to be seen yet (still waiting on the results of a PCR test) whether it’s omicron (covid) or not. i have symptoms that come and go but for the past week i’ve had severe fatigue, off and on runny nose, a cough and occasionally a scratchy throat, and i experience what feels like hot flashes but they don’t register as a fever with my digital forehead thermometer. oh, and i had a serious headache for a few days, which was actually the most alarming of symptoms because i just don’t get headaches… except when something is really wrong. (like when i had meningitis and discovered my brain tumors!) so i’ve taken two rapid tests, a few days apart, which both came back negative, and i went for a PCR on Thursday hoping to get the results back in time to partake in new year’s eve festivities. the results have still not come in and my symptoms have been so inconsistent it’s been hard to tell if i actually have something or am just worn out from working too much. i did end up going over to some friends’ house last night for a couple of hours but i kept my mask on even though we were outside and there was a strong breeze, and i kept my distance from everyone. i took a rapid test right before i went (negative) and felt fine when i went there but my energy waned pretty quickly and i came home around 11pm. i was in bed before midnight.
and here we are, january 1st, 2022. happy fucking new year. i want to be optimistic about what’s in store this year for all of us but it’s hard to do with omicron raging through new orleans and the country/world at the moment. but hey, mardi gras is on this year! which means we have a six day lull between the end of the christmas/new year’s holiday and the beginning of the carnival season which begins on thursday, 12th night (epiphany). bring on the king cake! the joan of arc parade is on and i guess we’re gonna go and just keep our masks on the whole time and try hard not to be in a thick crowd. not sure how mardi gras is gonna go but i think a lot of us are hoping omicron will have peaked and maybe passed for the most part by the height of carnival parade madness. more concerning is the pussyfooters’ blush ball, which i have a vip ticket for, which is on january 28th. crossing fingers!
i guess that’s enough of a longwinded post for now, to get me caught up. i’ll make a separate post about what has been percolating in my mind creatively and what i’m otherwise working on for 2022. go eat your black eyed peas and cabbage y’all!
i mean, it is all about my brain, really. but i just went for my annual physical with my GP (dr. yount) who is also my GYN on monday and am overall pretty pleased with the results. it’s so convenient to get my annual PAP/STI screening at the same time as my blood work and all the other stuff. dr. yount is a one-stop shop! i hadn’t seen her since my brain surgery – in fact, she was the one who gave me the referral to get the MRI that got me on the path to the surgery at my last annual, last july. so we had a lot of catching up to do.
my BP was just a tad high 134/82 in the office – but when i check it at home, 8 times out of 10 it’s in the 120’s/80 or lower, much closer to “normal,” so she told me to just keep monitoring it. i’ve gained all the pounds i lost post-surgery but am at my usual weight, haven’t put on any extra pounds. she poked and prodded me, they took a urine sample, and lots of blood. (thankfully they found a vein on the first try!)
my lab tests all came back today and everything checks out as being within normal range except my cholesterol, which is of course borderline high. my HDL and triglycerides are actually really good though, so that helps. it’s the LDL that is bad. i think i need to make some adjustments to my diet for sure. i’ve been trying to eat better the past couple of weeks but particularly when i’m overnight dog sitting and rushing around with no spare time, i have to admit i eat pretty crappy. lots of takeout and frozen meals. this past week i stepped up the exercise, adding an evening walk in the park to my routine, which also has the added bonus of aiding in my digestion of dinner and helping me sleep better. but i’ll need to stick with it and get more vigilant with what i’m eating, for sure.
the part i’m pleased about is that my glucose and A1C were both good, both of which had been flagged last year as borderline high. i really think it had something to do with the fact that i didn’t fast last year before the exam, in fact i ate lunch right before i went there! but this year i made sure to eat breakfast really early and not have anything else but water for 8 hours before they drew blood, so i think these results are a lot more accurate. so no diabetes for me!
am i the model of health for a 53-almost-54 year old woman? no. i have pounds to lose, i have achy joints and a wonky knee, high cholesterol and blood pressure that i have to keep an eye on, and i know i’m at risk for heart disease – it runs in the family. not to mention the remaining brain tumor. but really, despite all that, i’m in pretty good overall health. i exercise daily, i drink a LOT of water, i don’t drink sugary sweet drinks, i no longer drink alcohol and don’t smoke. now if i can just figure out how to eat better on a regular basis and keep stepping up the exercise.
i swear, if there was ONE thing i could say to my younger self, to change the trajectory of my life, it would be to take better care of my body and to pay more attention to what i put into it. and to exercise more. we all just think we’re so invincible when we’re young, don’t we? but i can’t turn back the hands of time, so here i am at midlife. time to make some adjustments.
yesterday marked 9 months since my brain surgery! in some ways it feels like a very distant memory; in others, it seems like it was yesterday.
overall, i am doing great. i am functioning more or less normally in most ways in my life, to the point that anyone who sees me out and about in the world would not ever know i had brain surgery unless i told them.
i am still struggling with a few “invisible” deficits (my throat is still a hot mess, between my frozen left vocal cord and my permanently swollen right tonsil – i sound like an old man coughing and clearing my throat all the time as these issues still make swallowing and breathing challenging at times) but they are minor in the grand scheme of things.
my eyesight has stabilized for the most part; i only have double vision first thing in the morning or really late at night when i’m really tired, on rare occasion. i still haven’t made it in to the eye doctor but hopefully a new prescription will resolve some of that.
my head – skull, really – still feels weird. waking up each morning is a daily reminder of the trauma i went through, as my head and neck always hurt for a little while – likely from the pressure having built up, from being flat all night – but once i’m up and about it goes away. from what i’m reading from others who’ve had this surgery, it really doesn’t ever get better. my head is going to feel strange for the rest of my life. i have accepted this and i try to not let it bother me but some days it’s hard to not dwell on it. it can be alarming.
my voice comes and goes. some days it is better than others. people still tell me it sounds like i’m getting closer and closer to my regular voice but to me it still sounds so strange and not me at all. the thing that bothers me most is not being able to speak loudly or yell. folks still have a hard time hearing me sometimes.
i would say my work capacity is at about maybe 2/3rds to 3/4ths of what i was able to do pre-surgery, with some limitations. (i think i learned last week that 10 days is maybe too long for overnight sitting without getting some kind of break. i managed, but i also got sick in the middle of the sit, likely due to being rundown from lack of sleep and just overdoing it.)
i might not ever get back that last 1/4 to 1/3 of my capacity, but that’s ok. i just have to adjust and be careful about taking care of myself. it’s a very strange realization to have that you might not quite be the same person you were before a major surgery, but i guess it’s a realization that many people have over the course of their lifetimes, about various kinds of surgery. and really, i’ve bounced back pretty well and i have a lot to be grateful for.
speaking of which, i’m in the middle of sending out handmade thank you cards to everyone who helped me through surgery in any way. it is a very long and laborious process, as my spreadsheet has 350+ people on it to thank! and there are a lot of folks i don’t have mailing addresses for. so if you are reading this and you don’t think i have your snail mail address, please do send it along. i will eventually ask you for it when i get to your name on my list but free free to volunteer it.
not much really to report otherwise. it’s starting to be the dead of summer here, mid july. we’ve been spared the extreme heat/humidity combo through most of june thanks to daily rain but it looks like it’s setting in now, and it is more draining to me than it ever was before. i’m grateful i only walk dogs half the day now because i don’t think i could handle much more. i literally have to come home and lie down in the AC every afternoon when i’m done to recuperate… and that’s from only 4 hours of walking.
i did manage to schedule some vacation for myself in august around my birthday though, and i’m greatly looking forward to it. i haven’t gotten out of town since december 2019 so vacation is long overdue. and great to have 10 days off work in august which is usually the most miserable month of the year.
so that’s it, that’s my update. hope everyone’s having a good summer!
this is a health-related post, so if you’ve come here looking for NA beer reviews, use the category links for that blog stream. i don’t have any big health updates, just a few observations and thoughts after a long day of jazz festing in place with friends yesterday.
i really struggled with my voice and my energy yesterday. we were outdoors, no masks cuz we were all fully vaccinated, with WWOZ blaring from a bluetooth speaker. there were ten or so of us, spread out, so when i spoke, there was enough going on that i had to try to project my voice across distance and over others who were having side conversations as well as the music. it was fine at first – it’s definitely better without the mask and my voice has gotten stronger over time – but the longer the day went on, the harder it became to do and the more strained my throat felt. and the softer and higher pitched my voice got. and the more exhausted i was.
trying to speak loud enough to be heard exerts a lot of energy. it also messes with my breathing, which also expends energy. (i never realized before surgery and my ensuing complications that your vocal folds have a lot to do with regulating your breath going in and out of your wind pipe. so talking a lot, when one side of your vocal cords is paralyzed, makes breathing harder while doing so.) and then there was the angelique kidjo dancing in the kitchen interlude which put almost 3000 steps onto my fitbit and had me breaking out in a sweat at one point. that was probably the last straw.
all of this lead to me rather abruptly running out of energy like a suddenly depleted battery in a child’s toy. i could feel myself waning and then i just hit a wall and i could no longer function. it wasn’t because i hadn’t slept the night before – i had. i’m not sick. and i had not over-eaten or under-eaten. and i certainly could not attribute it to alcohol as i was drinking NA beer all day (hat tip to rightside brewing’s citrus wheat!) along with some rosemint tea w/ginger ale. this is just how it is now. folks with chronic illness often use the “spoons” analogy and i’m reluctant to appropriate that because i don’t have a chronic illness but i do feel like i now understand that more than i ever did before. post-surgery, i don’t have as much energy as i use to just take for granted having; i now seem to really have a limit, and once that limit is used up, i’m done. period. no pushing through to carry on. i just need to lie down. done. like a toddler.
and it doesn’t take strenuous physical activity to get me there. apparently all it takes is six hours of socializing while seated, constant talking, and a few minutes of dancing in the kitchen.
don’t get me wrong – i’m so happy to be alive and to have recovered so well from a successful major surgery where they drilled into my skull, peeled back part of it, and removed an intruder from my brain stem. but i am not the person i was before and i’m still just getting used to the person i am now, the limitations this still-recuperating body has now.
i don’t share all this to be whining or complaining. i do so because i feel like in general i’ve put a happy face on all of my recovery, and when i see folks now who have only seen me sporadically or on social media, i think they think i’m totally back to “normal” and don’t realize i am still enduring struggles, however minor in the grand scheme of things. but they are still there, and account for my sometimes abrupt change of mood.
in many ways its convenient that that my surgery and recuperation has happened during the pandemic, when life has slowed down and there’s not as much activity going on. i’m not sure that i would actually make it through a normal day at jazzfest at the fairgrounds right now. here’s hoping i build my endurance back up before october when jazzfest hopefully returns.
i just realized that this past tuesday was my six month mark, post-surgery! woo hoo!
nothing really to report in terms of health updates. i continue to inch closer back to “normal” or whatever that was pre-surgery, mid-pandemic. no lingering effects from the second moderna shot, that i can tell – and i am fully vaccinated now! it has felt really wonderful to share a few hugs with other vaccinated friends. finally the year of no-human-physical-contact ends.
i am still taking only four dog walks each morning most days, but pet sitting is really picking up. this week i have another long weekend pet sit (a dog, two cats and two birds) and have several more bookings in may and june so far. i’m trying to be smart about it – spacing them out, not taking back-to-back bookings, so i have time to rest and reset in between. i know it seems like staying overnight with dogs and cats in other peoples’ houses should be a cush, fun job, and it definitely can be fun cuz i do love all the critters, but it can actually be quite stressful and physically demanding in my older age – all the extra dog walks, poop scooping, and running back and forth between clients homes and my own to feed my needy feline pair. and all the disrupted sleep, usually from pets who are confused being out of their regular schedule and without their owners. the bad sleep is just something i can’t absorb anymore without consequences the next day. i always joked that this business would have been a GREAT idea to have had in my 20s when i was younger and more resilient. but here i am, 53 and 10 years in business. i guess the challenge now is just to learn how to work smarter.
the other thing i realized is that if it’s been six months since i had surgery, it’s been almost seven since i’ve had any alcohol. (i stopped drinking a couple weeks before surgery, just to be in the best possible shape for such a traumatic physical experience.) it’s such a weird thing to realize, for me. i have been a beer drinking fool since i was 15. i don’t think i’ve ever gone more than a few days, maybe a week, without alcohol my whole life. i have never been an alcoholic or even considered myself to have a problem with alcohol, but if i’m honest i can certainly say i’ve abused alcohol on many occasions and definitely drank way too much, often. drinking is such a part of social life here, and as a shy, socially-awkward introvert i have often relied on alcohol as my social lubricant to get me through the anxiety of being around people. plus i do enjoy the relaxation and melting away of the world’s cares it provides short term.
as i have aged though, i think all that beer/alcohol finally caught up to me, because the last decade or so i’ve become acutely aware of how much my body punishes me the next day for imbibing. my body no longer likes alcohol. (maybe it never did but the after effects were easier to suffer through when i was younger.) i still enjoy the buzz it gives me, and i still love the taste of craft beer, but the headaches, the body fatigue and pain, and the risks of what further damage it is doing to my brain and other internal organs is no longer worth it to me. (i only recently realized the link between alcohol consumption and cancer!) i’m not saying i won’t ever drink alcohol again, but when i do, i hope it’s in much more moderation and maybe even only as a special treat. i can envision going back out to bars/restaurants with friends and having one of my favorite leaded beers and then switching to NA for the rest of the evening. that would seem a good compromise to me.
finding the deliciousness of the new wave of craft non-alcoholic beer has given me a whole new perspective on it too. i can drink this stuff and not crave an actual beer. it can represent to me much of what “having a beer” always did for me, and it still satisfies the taste element. no, it’s not the same – NA beer is always going to taste different than alcoholic beer – it’s different, but it’s still good. and interesting. and there’s variety, just like in the craft beer world. now if we could make it the norm for bars and restaurants in the US and NOLA specifically to be offering a selection of these on their menus next to the craft beer roster, then i would be a happy gal. (europe has been on this trend for years. you can pretty much find NA beer on tap in lots of pubs and there is a much wider variety of NA craft beer being produced. europeans understand that NA beer is not just for alcoholics; mindful drinking should be for everyone.)
the most surprising part to me of this NA adventure is how much i’m learning about beer! it’s not that i didn’t have some knowledge of the different styles and brewing techniques before – i’ve always been somewhat interested – but i think drinking without the alcohol makes me even more interested. (and writing about it now also contributes, i’m sure.) it makes me more adventurous in trying different styles and brands too. i have lately tapered off my wild buying sprees of new and different beers, choosing to stick with the ones i’ve really enjoyed the most, but there’s still plenty of NA brews on my must-try list and i’ll get around to them eventually. so stay tuned!
