no, this isn’t part of my halloween costume. it’s my radiation mask.
earlier this week, i went in for my CT/Simulation appointment, which is what they do prior to a course of radiation. they make this mask out of thermoplastic mesh and they mold it to your face. the sheet of mesh is warmed so it’s pliable and then draped over your face and the techs smoosh it down til it’s a snug fit all around your nose, eyes, mouth and other facial features. it doesn’t take long to harden and then they snap it down to the platform you are on so you cannot move your head at all. i was not able to move my mouth to speak, open my eyes, and really could only breathe out of one side of my nose. but i could breathe. it’s mesh so there are holes thank goddess or it would be unbearable.
i’m not gonna lie it was a little scary getting snapped down to the table to get the CT scan, which they will use in conjunction with the PET scan i got on friday and my last MRI to map where my tumors are and where the radiation goes. but thankfully it didn’t take long. and my radiation treatments will only be about 15 minutes each time so i don’t have to be in the mask for very long. my head was pretty immobile but i could still swallow, which does move your head slightly. i’ll be asking about that and i guess also trying hard not to have to swallow. but swallowing is one of those involuntary things you just do sometimes without thinking about it so i’m nervous about that. my biggest fear is inadvertently doing something that moves my head and they fry my good brain cells. but otherwise i think i’ll be able to tolerate the treatments ok, as the mask part is really the hardest part of it. thank goddess i’m not claustrophobic.
they tell me i won’t feel the radiation at all while it’s happening. many people do develop slight burns or some level of skin irritation at the entry/exit points and sometimes folks lose some hair around those spots. it’s not as common to lose all or large parts of your hair, though i guess it is still a remote possibility. i went ahead and already buzzed my hair pretty short so you can already see my scalp around the sides and back, with a little more on top. my hair is thinly placed on my head, always has been, so if some falls out i don’t think it’s going to be very dramatic. i can always shave part or all of it if need be. that part doesn’t really concern me.
the techs were really sweet. i’ll be in a different room for the actual radiation treatments but it’s just across the hall and i’ll probably have the same techs. when i left they gave me a parking pass for the oncology parking lot, which is off Galvez and is the main entrance to the cancer clinic. it’s a much shorter walk than parking in the main UMC parking lot. this will make things much faster and it will be good to not have to walk so much after treatment in case it does affect me.
i got the results of my PET scan in on MyChart and i couldn’t keep myself from looking. i don’t really understand what it said but after some googling of terminology, i think it’s saying there are some concerns about my liver and spleen functions. so i guess i have that to look forward to after radiation, exploring that more or figuring out what needs to be done there.
the next appointment is my follow-up with my neuro oncologist. i’m guessing she will explain the PET scan and give me referrals if needed. i’m also hoping she tells me how the tumor board went, even though it clearly is not affecting the recommendation to get radiation. i’m still curious what was said.
and then after that, i start with my first radiation appointment on monday, september 28th at 2:30pm. all the other appointments will be at 2pm. it will be monday – friday for six weeks, ending on november 6th. seems like such a long time. ugh. hopefully i will get used to it and it will go by quickly. and i hope my energy holds up so i can keep working. cuz i don’t have backup and i don’t have any other way to support myself if my pet income isn’t coming in. but i guess we’ll cross that bridge when it comes to it.
it’s been nearly 3 years since i wrote in this blog. a lot has changed. a lot hasn’t.
i’m not gonna offer a laundry list of ways that my life has changed or hasn’t since i wrote last. anyone who might stumble upon this blog likely follows me on my art blog or on my various social media and/or knows me in real life, so i won’t waste space and time on all that.
the reason i came here today was to write a bit about my current brain stuff, as a way to keep processing what i’m going through. i don’t know if anyone will ever read this but i write this thing mostly for myself anyways.
so yeah, after some years of not much happening with my brain tumors we are now at a point of activity again. i had yearly and then every six month MRIs since surgery in 2020 and most every scan showed not much change. but cumulatively there was some slight if glacial growth (1mm since 2022) and this last MRI has my radiation doc feeling like it’s time to pull the trigger, as he said, on going forward with a course of radiation to stop the growth of these things before they can do me irreparable damage.
my most recent MRI
the biggest danger areas seem to be: a facial nerve – basically control over the entire right side of my face; my carotid artery; my brain stem (again); and my right auditory nerve. those are a lot of very sensitive areas. and while i don’t think i’m having any current symptoms that are new, just the same old droopy right eyelid and occasional double vision i’ve had since coming out of surgery in 2020, i really don’t need to add to that. enough time has passed since surgery that i feel ready to do this. not in any way excited about it but resigned to it, ready to take it on.
and now things seem to be moving swiftly. i had a PET/CT scan yesterday, which was new and odd. just the idea of being radioactive for a short amount of time is a weird thing to contemplate and experience, not that i could feel it in any way. the scan itself was different than what i’m used to with an MRI but better in some ways (not as loud or claustrophobic) and worse (just physically uncomfortable due to the curved platform i was on, and much longer) in others. but it’s over. that scan will help my radiation doc map my brain and the location of my tumors for the actual treatments.
PET scan machine
the tumor board – my radiation oncologist and my neuro oncologist with i’m assuming my neurosurgeon and some others who deal with brain tumors – presumably met yesterday afternoon to discuss my case. i guess one of my oncologists will tell me more about it when i see them next. monday i have my CT Simulation appointment, i.e. thermoplastic mask creation. here’s a pic from the internet so you can visualize it:
stock photo of what a radiation mask looks like in action
yes they actually screw your head down to the platform you’re on, so you can’t move… cuz they don’t want to accidentally hit any healthy brain tissue and only want to hit the tumors. you can see how this might be a little claustrophobic and anxiety-producing. i don’t generally have claustrophobia but the gravity of the situation – them having to be precise within a millimeter so as not to fry my actual brain cells – is certainly anxiety-producing. my doc did already give me a prescription for some ativan; hopefully that will do the trick. and debra is coming with me monday and will come to at least my first few appointments whenever those get scheduled.
so yeah. i know lots of folks have gone through these treatments just fine and many do not have a lot of side effects. but some folks do. hair loss, at least in the spots where the radiation goes in and out, is common. nausea, not my favorite. and varying levels of fatigue are common, especially towards the end of treatment and in the months after, as it is something that is cumulative. i’ll be getting 5-6 weeks, 5 days a week, 15 minutes a day treatments. (i can’t remember the specific number of rounds but it’s somewhere between 26-30.)
i am hoping i can schedule my treatments for afternoons, so i can still work my regular dog walking schedule in the mornings. and i am praying the fatigue is not so great as to affect my ability to keep working in general. cuz if it does, then that brings up a whole ‘nother set of issues and stresses for me to deal with around money, i.e. having enough money to live off of. and of course there’s still whatever the cost of all this health care will end up being to me. i have insurance and have already met my deductible this year because of 2 MRIs so should only have a 10% co-pay but with so many rounds of radiation that’s bound to add up. i have no idea what to expect on that front. (the PET/CT scan was a $10K+ procedure that i ended up only having to pay $225 for which is great but with so many rounds, who knows.) i really don’t wanna have to do another gofundme, but i guess i will if i need to cuz i have no savings and my credit cards are already all maxed out with previous heathcare, vet and just living bills.
maybe i’ll keep writing about the radiation process as i move through it. or maybe not, if it’s unremarkable. but i just kinda wanted to record my thoughts about it all while i’m anticipating it. thanks for reading.
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!
this isn’t a health update regarding my brain surgery, but it is a health update nonetheless. and it does seem important for me, given what i’ve been through with surgery and my lengthy recuperation, to have gotten the vaccine. i wanted to write down my experience with side effects for myself and also in case it’s helpful to anyone else. so here i am, updating.
i got my second dose of moderna on monday afternoon. my first dose a month ago was uneventful. i had a little bit of a sore arm a day after the shot and maybe a day of fatigue about a week afterwards. (though who knows, maybe it was unrelated?) but i’d heard the second shot of moderna in particular was really affecting people so i was a little worried, though nonetheless excited to be getting it over with.
so, the second shot. both times i got it in my left arm, my logic being that post-surgery, i can’t sleep on my left side cuz my head hurts when i put pressure on the surgery site – and i am a flip-flopper in the night – so i wanted to preserve my ability to sleep on my right side by not getting the shot in that arm. so left arm it was. just like the first time, my immediate reaction was just a sore arm, more of an annoyance than a problem.
i was vaccinated around 3:30pm. by evening, my arm was sore and i was feeling a little tired, but nothing else. i woke up the next morning thinking, hmm, this isn’t so bad. maybe i won’t have any big side effects. i went to work and for the first two dog walks of the morning, i felt ok. it was raining so i was distracted by all the ways the rain makes walking dogs difficult. but by the third walk, with the rain holding off, i was starting to notice my left ankle being very sore, hard to put weight on. i do have problems with my joints from time to time, but not usually that bad. by the 4th walk of the morning, my knees and hips were starting to really bother me too, and i was literally limping along. i was struggling. it was painful to finish that walk and to get in and out of the car. my whole pelvic region felt inflamed.
i came home, had a bowl of granola and almond milk for lunch, and realized every joint in my body was aflame. everything hurt, even when i wasn’t moving. lying on the futon on top of the electric blanket, like a giant heating pad, helped a little, but not a lot. i checked my temperature and i didn’t have a fever, but i was definitely feeling fatigued. by mid-afternoon i could barely keep my eyes open and had to go lie down in the bed. i ended up dozing most of the afternoon away, which was not such a bad way to pass a rainy, stormy afternoon. the cats were so concerned about me they snuggled in the bed with me.
i woke up right before it got dark because the cats were pestering me to feed them dinner. still achy, still fatigued, and now with a headache and chills. still no fever, though. fed the cats, warmed up and ate some pasta and sauce with veggies i’d made the day before, tried to watch a movie but couldn’t get though it because i just felt so awful and crawled back in bed. i didn’t end up taking anything because i’d read such conflicting reports online about whether it was OK to take ibuprofen or acetaminophen – i knew i wasn’t supposed to take it BEFORE getting the vaccine but still felt confused about whether it messed with the efficacy of the vaccine afterwards. so i decided to just tough it out and hopefully sleep it off.
slept all the way through the night and woke up this morning feeling much better. joint pain was gone, body aches, headache and chills gone. i felt like i had a little residual hangover type feeling, from what i’d been through the day before, but that quickly left as i got up and moved around, had coffee, ate breakfast. i worked today and had no problem walking dogs.
my only remaining symptom is that my arm is still sore at the injection site, though maybe a little less so, and just today it has started to also be red in the general area of the shot. but otherwise i feel fine. i guess my body did what it was supposed to do.
i signed up with the V-SAFE program to report my side effects; you should too if you have recently had shot one or two of any of the covid-19 vaccines. it helps the cdc and the vaccine makers learn more about how the vaccines are affecting people. if you feel your specific side effects were worth noting, you might also file a VAERS report. if your side effects made you seek medical help, your doctor or the facility are required to file one of those reports, but if you didn’t you can still do so. you can also use that site to access all their data and see what kinds of side effects people are having and reporting. it’s kind of fascinating
and that’s it. now i just have to wait two weeks to be fully vaccinated! yay!
and, just in, governor edwards announced this afternoon that as of next monday, the 29th, everyone in louisiana 16+ will be eligible for a covid-19 vaccine! (16+ for J&J, 18+ for pfizer or moderna.) so if you haven’t gotten your shot yet, now’s the time to make that appointment. and please encourage your family, your friends, neighbors, co-workers, everyone you know to get vaccinated as well. with europe going back on lockdown and numbers starting to rise in parts of the US, we are in a race against the virus to get folks vaccinated so we can get to herd immunity. let’s do this people!
this is just a quickie update about my visit to the ENT doc this afternoon. he wasn’t even gonna scope me this time – trying to save me money – because he could pretty much tell how i was doing just by listening to me. but we ended up deciding it would be good to have it documented, what my vocal cords were looking like, so he went ahead. it was very quick though. it didn’t even freak me out this time.
i don’t have any pics and though he swears i should have access to them via my chart (electronic patient file), they are never there. there are never any pictures or videos, just written reports. i wasn’t quick on the draw with my camera today so i didn’t think to video it. i couldn’t tell from looking at it myself what was going on so not sure the pics would be helpful anyways.
but dr. ballay said what he thinks is happening is my right vocal cord is compensating for the left one that is still mostly paralyzed. it works overtime and gets a little beefed up from doing so, and so makes contact with the left vocal cord better. hence, my voice improvements. but they are still not making a solid seal together. this was a bit of a bummer because i’d hoped he would tell me my left vocal cord was moving more. but apparently it’s not.
however, he said this is typical. and he did not recommend any procedures at this point, because i’m doing so well, able to speak so much better and not having swallowing or breathing problems that impede my functionality. so he said as long as i was OK with it, we should just give it some more time. he said sometimes he does see the nerves and vocal cord just spring back and start to work all of a sudden, so it could still happen. and he was overall very pleased with my progress.
he recommended i continue doing all the vocal exercises they gave me in speech therapy, that they will continue to help me. (i try to remember but have to admit to not doing as well with this as i was when i was actually IN speech therapy. so i will recommit to doing them every day.) he said to call him if anything changed in a bad way, if i was having any problems, but otherwise we agreed i would have another checkup in the fall, maybe around the one-year mark.
so there ya have it. he thinks i’m doing really well – a lot of patients who have post-surgical issues like mine come to him in much worse shape, not able to speak well, aspirating and unable to clear moisture that ends up in the airway. he said as long as i have a good strong cough that can clear anything that goes down the wrong way, i’m good. so i think i’m good! yay!
no more doctor’s appointments until i go back to see the neurosurgeon at the 9 month mark this summer. and i’ll have my annual with dr. yount around that same time. whew! i’m free for a while!
i don’t really have anything major to update here since the last post. i go back to see dr. ballay, the ENT, next week. he is likely to scope me again to check out my vocal cords and suggest some procedures to fix them if they haven’t managed to free themselves up enough to his liking. i am pretty sure i will just keep waiting it out – i don’t want any more interventions to recuperate from right now, and things are ok as they are. i’m used to my funny voice at this point and it continues to get stronger as the days go by.
i thought i’d talk about some of the things i don’t usually talk about, that are different and weird with my body and probably will be for the rest of my life. recovering from a major surgery like a craniotomy is not just a couple-month thing that you are suddenly done with – it’s an ongoing process and many who have undergone what i’ve been through report they don’t get back to feeling themselves for a year or more. some, many years. i feel like i’m doing pretty well to have a lot of my time each day where i don’t even think about the fact that someone cut my head open 5 months ago and extracted an invader and glued and stapled me back together again. i’m doing great and am super grateful for that and for all the support from all y’all that got me here.
but still. every single morning the first thought i have when i wake up is a sort of panic thought, an inventory of my skull and neck, to make sure my head hasn’t cracked open along my surgical scar and my brain hasn’t leaked out all over the place in my sleep. this might sound ridiculous or irrational, but it’s true. i wake up every day to the sound of my own heartbeat and blood rushing through my head, pounding around my ears, which is alarming. i am keenly aware of the pressure that has built up by the simple action of lying flat in the bed, head rested on my pillow, for 6-8 hours. this is not unusual for folks who’ve had this surgery, and i could remedy some of the pressure by using my wedge pillow to elevate my head/torso while sleeping, but in those few weeks post-surgery when i absolutely HAD to use the wedge pillow, i found it very uncomfortable for my body, gave me kinks in my back and shoulders, and not conducive to restful sleep. so i am reluctant to go back to it since i am getting good sleep lying flat.
but it’s a distressing way to wake up every morning, a rough way to start each day, being reminded of the trauma my body has been through and how it’s not quite done recuperating. as soon as i get out of bed and start moving around, the blood redistributes itself in my body and the pressure goes away, so it’s really only a momentary experience, thankfully. but nonetheless disturbing. i hope it eventually stops being like this.
(and before i get any “helpful” comments about my blood pressure, i take my BP with a home unit almost daily, at different times of day and night, and it’s always completely normal and sometimes even kinda low. never high. 111/72 last night. so that’s not it.)
i also have a faint bit of tinnitus that stays with me throughout the day, though i don’t notice it much after i am out in the world. i can’t decide if it’s always been with me and i just never really noticed it before – a relic of my years of DJ’ing, as i am aware of some hearing loss for the same reason – or if it is new and tied to the brain surgery. (my incision is kind of a curve around my left ear and many folks who have this surgery report issues with their hearing or lingering tinnitus.) i’m aware of it mostly when it’s very quiet, which is usually only in my house in the early morning or late night.
and then there is the hair loss. i don’t have a lot of hair to begin with – i inherited my father’s very thin, fine hair that grows sparsely over my head. it’s one of the reasons (not the only, obviously) i’ve always worn my hair short, because when it is longer, it is limp and lifeless and just thin and not flattering. but ever since surgery, i’ve been noticing i lose a LOT more hair every time i shower. the drain catcher is always full making the water back up in the tub halfway through every shower i take, which NEVER happened to me before. maybe it would happen once a week or every two weeks before surgery. now it’s every day. i don’t have any bald spots and it’s not coming out in clumps or anything; i am just shedding more than i used to and it’s noticeable and disturbing to me. (yes this could also be partly menopause related, but the timing seems related to surgery.)
also, the shape of my head, my skull, is SO WEIRD now. with my hair grown in, it’s not noticeable to anyone else (see picture above), but i feel it when i rub my fingers over my scalp, like when washing my hair. along my scar line it’s a little sunken in, and there are weird ridges now in the general incision area that didn’t used to be there. my left ear also pokes out much further away from my face than it used to, different than my right ear. it makes my glasses sit a little cockeyed and i’ve wondered if that contributed to my vision issues. and overall, my scalp just feels tighter and strange. i usually only notice it when combing my hair, or putting on a hat. and there are still numb spots along the scar. but yeah. my skull is pretty weird now. i think maybe it is just my new normal, as others who’ve had the same surgery report similar symptoms even years after surgery.
my vision has thankfully evened out, though. either that or my brain has learned to compensate for it, cuz i don’t notice double vision anymore. if i am looking for it, i DO notice i still have a hard time focusing in my upper right quadrant, which was an area we worked on in physical therapy. but i don’t have much need for looking in that direction often so it’s not something i notice. i think maybe i just move my head more to accommodate that deficit. my eyes do still get tired easily and i do still have dry eye especially late at night. drops help a little for a few minutes but not in any long term way. i think i will go in to my usual eye doctor soon for a prescription update and see what he says.
i hardly notice my swallowing issues anymore and am now convinced i was already having trouble with it before surgery, though it’s hard to isolate if i always had this trouble my whole life or if it was something that crept up on me as my tumor grew and likely stretched out/displaced my nerves in that area. i eat/drink everything fairly normally now and only rarely am reminded by a too-big bite or something really dry and difficult to slow down and give a good swallow with all my might to force something down that’s gotten “stuck.” as long as i have liquid with my meals, it’s not usually an issue that even registers anymore. so that’s good. i guess dr. ballay will probably order another barium swallow test to see how i’ve progressed so i’ll have a real answer soon about whether i’ve just adapted or if things have truly improved.
i do notice my breathing is more labored than it ever was before, at times, and i think that has to do with the remaining vocal cord issues. it’s not that i can’t breathe, but if i’m trying to talk or eat while also being active in any way that causes me to breathe heavier, it can be challenging. and i regularly take only short, shallow breathes and have to be mindful to take in deep breathes to get really good levels of oxygen going. everything just takes more thought, more mindfulness now, rather than just being automatic.
and lastly, my energy levels. while it’s definitely continuing to get better and i make it through my days of dog walking pretty easily since it’s only really a half day of work, i did notice when i was dog sitting and adding in several more walks a day that i was truly exhausted by it. i needed a few days after that job to recuperate. so i think going forward i will only schedule overnight sits when i can do so with ample recuperation time afterwards. and i’m really not looking forward to the heat and humidity of the summer!
so yeah. i’m still dealing with the after-effects of the surgery. i don’t talk about it now cuz it just sounds like i’m whining and maybe doesn’t sound consequential to anyone else, but some days are still a struggle. i still have bad days, especially if for whatever reason i haven’t slept well. lack of sleep hits me a LOT harder than it used to, and since i’m an early riser, that means i don’t do late nights much. i’m generally in bed by 10 or 10:30 at the latest, and awake by 6 or 6:30 due to my cat alarms.
oh, and just cuz some folks have asked: yes, i got my first moderna shot two weeks ago and will go for my 2nd a week from monday. hardly felt the jab at all, and just a tad bit of arm soreness. about a week after the shot i had one day of feeling really run down, but not sure if that was due to the shot or just a regular off day. it passed. i’m a little worried about the side effects from the 2nd shot, especially since it’s on a monday and i will have to work the next day, but here’s hoping it doesn’t affect me too badly.
i know this was long; thanks for reading! i’ll give another shorter update next week after the appointment with the ENT.
just a quick update to say all is going well. i had my last speech therapy appointment feb. 18th and don’t have any more doctor’s appointments until march 18th when i see dr. ballay, the ENT, again.
i continue to work half days dog walking with four clients, and just this last week reintroduced dog sitting to the repertoire. i’ve been staying with the world’s most lovely 10 year old husky named luna, and i’m in love with her! she is the sweetest and best dog, though has been exhausting me with four more walks a day in addition to my usual four. so my daily average of between 8-10,000 steps has gone up to around 15-17,000 steps a day!
the rollercoaster of weather changes has my body a little out of whack though. i’ve had some random vertigo outta nowhere that comes and goes in the course of a day; nothing so severe that i can’t function but enough to make me feel slightly “off.” and sleeping overnight in a different bed, regardless of how comfortable it is, always affects my sleep. so as this week of dogsitting winds down, i’m feeling myself pretty drained and exhausted. hopefully the weekend will recharge me.
so i guess no more health updates until the next doctor’s appointment. i’m doing ok, trying to remember to do my PT and ST exercises on my own regularly, still doing weekly neurosculpting mediations with emily, and trying to eat more fruits and vegetables by making weekly purchases from the farmers market. i hardly go to the grocery store anymore though i do still eat out more than i should, especially when i’m staying outside my home. but for the most part i think i’m doing a pretty good job of self care and i continue to be so grateful to have had the resources and support to take this recuperation at my own pace.
this might take me a while, but i’m gonna copy/paste all my meal train updates from my brain surgery saga here and back date them so i have a record of all that not on meal train. and then i can post future updates here.
so any posts you see from before this one are copied over. any posts you see after this one are new updates and probably aren’t on the mealtrain site.
