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.