I re-watch Grey’s Anatomy on Netflix. Over and over. It’s like comfort food for my soul and every time I watch another run through of all (now) 14 seasons, I find something else to hold onto, something else to relate to…..or occasionally, a lot like this week, something to connect to.
It’s been a tough week. Hell, I always feel like I could pick a point in time and say “it’s been a bit of a rough ____.” (And on the other side of the coin, I could simply pick a point in time and just be grateful…I know.)
The story of this week in particular starts last weekend. We chose last Saturday to make the second of our annual pilgrimages to the 16th century… AKA we try to go to our state’s Renn Fest at least twice during the season. A handful of times through the years we’ve managed to go more than once or twice, but two trips is our goal. There are nine weekends in the “Faire Season”, and we always go on opening weekend because it typically falls on or very close to my oldest daughter’s birthday, so somehow in the last dozen years or so we have created a family tradition of going to opening weekend at RennFest as part of K’s birthday. Our second trip is usually near the first weekend in October.
So we decided to go last weekend, and even though I love going, I also know I *will* physically pay for it in the following days. It’s a lot…a lot of people, and socializing, and walking, and being dressed up in full garb (dressing clue: boots then corset!!). It’s just a lot, so at the very least I am going to be extremely tired and sore (I once bruised my ribs from my corset). I have, in previous years, ended up in the ER at 2 am from a migraine, and the accompanying dehydration and exhaustion. I made the mistake of going too soon after radiation treatment and again ended up in the ER because my potassium levels were stupid low.
Anyway, the point I’m getting to is that we decided to go last Saturday, so Sunday I was (predictably) very tired and sore, but certainly in much better shape than previous years.
Until I woke up on Wednesday knowing the coming storm of a menstrual migraine was on its way. I have …typically 2-4 days… a month that a migraine can take me down, or if I can’t fight it back hard enough and it gets too far out in front of me, it’s off to the ER. But I haven’t had to resort to an ER visit in well over a year.
I spent Wednesday fighting, pushing meds and fluids. Lots of meds. Beating down the pain, refusing the nausea. I spent the afternoon laying on the couch with my favorite blanket, and finally ended up taking a higher dose of my pain meds and migraine meds and wandered up to bed early. Pulled the covers over my head and just tried to sleep so I could get away from the pain and nausea.
I woke up Thursday feeling a little better. I still wasn’t up to functional, but I was upright, eating, back on a mostly regular schedule of my meds, back off Imitrex, and doing 75%ish in life.
Except as I was settling into bed Thursday night, my *dh finally realizes I have been dealing with a lot for the prior 48 hours. After 2 days of me fighting from my soul to keep me out of the hospital, he decides to actually LOOK AT me and saw the cost of 2 days. I was really pale, my random black eye on my left eye swung in for a visit. Basically I look like I have been fighting….something.
I just looked at him…..
2 days. Two DAYS. 48+hours TWO FLUFFING DAYS……
I feel like a ghost in my house. I have so much more to say…..so much….
but I’m disappearing…..
*dh= “darling” husband. Read it in whatever tone you feel would fit described sitch.
Holy timelines!! Has it really been a month since I last posted?! I knew I haven’t been writing much, but I didn’t realize it had been close to 5 weeks. Sorry, I’m alive. If you follow my Instagram or my blog’s Facebook page, you know I’m still posting. I just haven’t been writing lately. Anything really. I’m barely even journaling much right now…
Since my last post, I’ve made one of our annual pilgrimages to our state’s RennFest. Opening weekend usually falls on or about my oldest daughter’s birthday and my family is a bunch of nerds so we go every year for her birthday.
Yes, that’s me in full garb. It’s taken me 5 or 6 years (and I have a couple of outfits) but yep, we show up in head to toe 16th century clothing. We usually go at least twice. Once for opening weekend (for K’s birthday) and once in October, the first weekend if we can swing it, for our anniversary because we got married October 2nd.
My youngest child has started her sophomore year in high school. And my son came home after 3+ years. And my husband is currently working on possibly changing jobs if everything lines up well. It’s been a busy month!
I also saw my neurologist and pain docs. Neurologically I’m stable and she pushed my annual check-the-brain-tumor MRI in July, but I’ll probably have a scan in November or December because I’m mostly stable (and I haven’t choked in quite a while, knock-on-wood, #dysphasiaisabitch ) but if I get overwhelmed my ability to remember anything or put a sentence together goes out the window.
I saw my pain docs and talked to them about the pain in my right hand (inspired by Wendy’s info) and they agree it’s probably De Quervain’s tenosynovitis. She chose to treat it first with a brace and Flector patches (diclofenac, an NSAID). I am really, really dominantly right handed so I sleep with the brace on. But when I slept with the patches on my right wrist, I woke up feeling like I was having a hard time breathing. Turns out there are associated cardiac risks with Flector (and I’m allergic to aspirin) so that was axed. I tried Lidocaine patches too, but they actually seemed to make it worse. Fortunately the brace seems to be helping and my pain doc has decided to wait on injections or referrals. It feels like a slow process to treat something they can actually fix, but one thing at a time, right?
I also talked to my pain clinic about the possibility of medicinal cannabis or even just CBD oil. Because of the meds I’m already on (and even though my state is finally getting on board with cannabis options) I would only be “allowed” topical CBD oil with prior notice. Anything else would fall under a “transference of care” and I would not be allowed to continue my current meds and be transferred to a doctor in this state that issues licenses for cannabis. So….yes, we’re making progress. No, it’s not easy. No, it’s not really a good option for me right now. I wish they’d allow me more time to work with stepping down off some meds and onto others, but I didn’t get the impression that was an option yet.
Tomorrow is one of the annual Navy events we try to go to, so I get to get all dolled up and go to a (semi)formal event tomorrow night. Next week is my 19th wedding anniversary. My youngest is up to her eyeballs in chorus and theatre (which means I’m sort of up to my eyeballs in stuff, but the school musical isn’t until Spring so I’m not quite up to tech week insanity. (If you know what that means, you get it.)
So, yes I’m still here. Juggling monkeys and handling stuff. Gentle hugs and hope you guys are good!
I realize my last post (definitely a minute ago) was pretty dark and unhappy, but indulge me for a minute? It’s been a week. I just need to vent.
I got voluntold I needed to schedule an appointment with my PCM at the beginning of the month because the doc I have been seeing for the last few years is rotating out and to save me the frustration of waiting for the new doc to check in and get up to speed and then catching her/him up on my particular case, it’d be easier just to get my yearly check out of the way.
So I got my labs and got the check up done. Labs were good, but doc was covering bases and wanted to make sure my brain tumor wasn’t getting any ideas about sending friends and relatives into any other body parts, so she gave me an order for a mammogram. I got that scheduled and it was done yesterday. (in other grumblings, I’m pretty sure she should have been kinder or bought me a drink….but anyway.)
In the midst of directing traffic, my pain specialists needed to reschedule my every-8-weeks check to be compliant. Okie-dokie. Reschedule me. Ain’t no thing. No, I don’t want to see the other PA, I’ll wait for the one I usually see. Yes, I know that’s an extra week. I’m used to you sending my scripts between appointments. Same doc, same pharmacy, yes I know the fluffing rules.
Scripts were due today. They called me yesterday to let me know they sent my scripts in, pick them up today. (yes. A lot of rules. I follow them. I’m over it but I still do it.)
Yes, my scripts were sent in, but they neglected to let me know they were only sending enough meds to line up with my appointment on the 27th instead of just filling the usual fluffing scripts and seeing me in 10 days.
Yes, my scripts were sent. Yes I’m happy they’re not making me wait and I’m not without pain meds. But I feel like I’m being punished for being sick.
The American approach to chronic illness/chronic pain is growing more and more frustrating. I jump through a lot of hoops and follow a lot of rules because I haven’t felt like I have a lot of options. I have an artificial hip from hip replacement surgery at 34 because I have Congenital Hip Dysplasia that was missed until well into my late 20’s. As a result, my spine is seriously pissed off most of the time. Then, four years ago, I was diagnosed with an inoperable brain tumor. Related? Possibly, but it doesn’t really matter now. I just treat and survive the symptoms.
I didn’t ask to be sick. I’m stable but it has taken years of going through a lot of trials and failing SSRIs, nerve pain meds, OTCs, and a bunch of other difficult options. I’ve been through anestesia 13 times in one year and I’ve lost count of how many needles they have stuck in my spine. It’s been fun.
So….hopefully understandably I am especially frustrated today. I feel like I’m being punished every time my doctors put up another roadblock or hurdle to jump through. I’m trying, and until more recently I haven’t had a lot of options in my state. Suffer or dance, monkey.
I actually now have another option, but I have to talk to my pain specialists and get them on board or I end up failing tests they require. Here’s hoping.
*sigh* I’m off to eat ice cream and watch something that hopefully will replace frustration and hostility with just a hair more patience.
April was nuts. I’m still trying to remember all the things and the stuff and the sharing…
Rehearsals, a concert, prom, tech week….
P!nk was amay.ZING!! And worth every penny for the not-exactly inexpensive tickets! Seeing her was bucket list stuff!
Four weeks of rehearsals for the kid because her school was (is …we have 2 more shows this weekend, and I’m finishing the editing of this post on Saturday afternoon) performing Anything Goes.
Rehearsals were 4-5 days a week, weekends were set builds, and one weekend was a dance intensive workshop to work on choreography. The kids have worked their butts off and it shows! They have put together an incredible show!
We got through the ….um, “stupid” business trip and my husband got back on April 4th. We jumped right into April insanity; meaning 5-6 days a week of rehearsals, me interrupting rehearsals on April 17th to drive up to DC to see my favorite show EVAR, prom on April 21, and then right into tech week. “Tech week” means full dress rehearsals and long days the last week of April. I volunteered food and serving the cast and crew, the band, the faculty, and the parents and volunteers two out of the three days.
Watching how many parents and teachers step up and volunteer to support the show is inspiring. They’re working HARD.
In the middle of tech week, we HAD to get tickets to squeeze in seeing Infinity War because we’re a household of hopeless geeks and I flat out told my kid I have to see it or stay off the internet until we do! Fortunately, we we able to find tickets for an 8 pm showing on Thursday night. (& we squeezed in a matinee on Saturday)
No spoilers. Don’t @ me. I’ve seen it twice so far. I won’t ruin anything for anyone else. 😉
But we will be seeing it again. Apparently we’re masochists.
Finally Friday, April 27 was opening night!
I am so proud of these kids. And I can’t even begin to describe how grateful I am for the teachers, staff, directors, and parent volunteers giving up all the time and work for this production. The kids have worked so hard and *my* kid is ecstatic about the chance to perform and all the support. This is me gushing because this is a new chapter for my youngest and it’s awesome to see her doing the next thing and loving the experience and support she gets.
We’re closing out a long and busy couple of months. One three-week-long business trip, one snowstorm, 4+ weeks of rehearsals, three gun incidences in our schools, one trip to New York, one P!nk concert, six high school musical performances, and one blood draw (yesterday) for new Cobalt and Chromium levels for my ortho surgeon when I see him again in just over 2 weeks.
Gentle hugs, a couple of deep breaths, and and 2000 words later it’s time to move forward. May is Brain Tumor Awareness Month! #gogreyinmay
❤ ~ Xun
I always said the one thing I got out of college (besides a degree and being the first woman in my family in 4 generations to go to college) was a birth order theory. I was a Psych major, which if you know me is kind of ridiculous because psychology is waaayyy too subjective for me.
I have discovered I am a really, really objective kind of girl. I like things to be true, and proveable, and empirical.
But somehow I failed algebra twice, I have a psych degree, I’m a writer, and I believe psychology is good for understanding birth order theory. And I have emerging observations about the generations in addition to birth order.
I’m Gen X. Born in the first half of the 70’s so I’m pretty sure that puts me squarely in Generation X. My parents being 20+ years older than me puts them in the Baby Boomer Generation. I had kids young and then, for several reasons I have touched on in previous blogs, I have a 10 year age gap between my oldest and youngest child, which was just enough to put them in millenials (kid 1 and 2) and almost Gen Z (youngest).
I am also an only child. Something that seems to be less common in my generation. But then I went on to have 3 children of my own. So when I started studying birth order in my second year of college, I found it really interesting. And, observing my own behaviors, my husband’s (he’s an oldest), and my three kids; I found a part of the abstract, subjective major I had chosen that made more sense to me. I always say in the unlikely event I ever go back to studying Psych I would focus on birth order.
One of the most interesting things to add, for me, is also throwing in the generational changes.
(I haven’t been blogging a lot, so I thought I’d share some of the noise in my head since health-wise I am mostly stable right now. Post MRSA, stable brain tumor, managed pain, waiting til June for more all-metal hip implant related tests. But I’m a writer, and it’s always noisy in here, even if most of it just ends up in my journals. So the birth order thing is a subject I find interesting. And this is today’s noise in my head.)
And the world is crazy enough right now so I’ll skip the commentary.
I am a born in the 70’s Gen X’er, very (very!!) much an only child. It’s not a bad gig, but I always knew I wanted more than one child of my own because there’s a lot of social skills you don’t necessarily learn as an only. Throw in that we moved A LOT when I was a kid (5 elementary schools, 2 middle schools, and 3 high schools), and you have me. Red-headed rebel child, introvert, music lover, dancer, writer, weirdo.
My husband is an oldest. He has 2 younger brothers in an age spacing kind of close to our kids. I had my oldest kid early in adulthood, which is a blessing because I started showing symptoms in my 20’s, so if I had waited to have kids until my late 20’s or early 30’s I might not have more than one….or maybe any. I have 3 kids, but I have been pregnant 5 times.
Anyway, back to the story. My oldest is squarely in the millenials. My oldest two actually. Born in the first half of the 90’s (92 & 94), they are all millennial. My youngest wasn’t born until December 2002, so she’s more of a gen Z. It’s interesting to see not only the differences in who they are as oldest, middle, and youngest; but different in generations.
Did you know it’s not uncommon for onlys to marry oldests? The oldest is usually more independent and responsible. The middles are often peace-makers or entertainers. Youngests are more easy going and happier. Onlys have traits of both oldests and youngests. (I mean, it makes sense right?)
I am an only, and an introvert, and happy to spend plenty of time by myself. But my youngest is known to follow whoever’s home around the house and just like to be nearby. My oldest is responsible and (too)hard on herself sometimes. My middle has always tried to make us laugh and he’s an entertainer.
What do you think? Are you an only? Or a youngest? Do you see bits of yourself in some of these traits?
Side note: Friends of mine lost their daughter to brain cancer this last week. Please consider donating to Stand Up 2 Cancer or The American Brain Tumor Association. Both causes close to my heart . Or even just share my post or the pages for either organization.
Prayers, positive energy, love, hope, or strength are all gratefully accepted and I will pass them on to the family.
My heart hurts so much for them right now. I don’t have the words….
❤ ~ X
One of the biggest changes I have noticed since being diagnosed with my brain tumor (headaches, vision changes, and falling down the stairs 4 times so far notwithstanding) is that I have days I have trouble processing time. I can look at the clock 4 times in 5 minutes and not being able to connect what time it is.
I understand morning, afternoon, and evening but I will have whole days when I have trouble understanding the clock when I look at it. It doesn’t matter if I look at a digital clock or a traditional clock.
For example, if I have plans or an appointment at 1:30 pm and I look at my clock and see it’s 11:00 am, I know I have time before I need to go, do, meet, see, ect. But I have days that I can look at the clock 3 times in 10 minutes and not understand what 11 am means, so I do the math in my head again and know I have 2 & 1/2 hours. But it’s just on these days I keep looking at the clock and it’s just difficult for me to understand it.
I think maybe it’s because:
1) I already struggle with subjective, abstract ideas. In college, the class I had the most trouble with was Critical Thinking. I fought with my instructor because I didn’t like being graded on something subjective.
I also think the Phantom Time Theory might have something to it, and I find the whole idea that the date and time is what we say it is because we’ve set it at some specific time. Clearly I’m not a fan of daylight savings time.
2) I think maybe the part of my brain that understands abstract ideas might have been damaged by the tumor and the crazy lasers they were shooting into my brain. (okay….radiation therapy, close enough.)
According to the many, many, many scans of my brain and my tumor, the mass seems to be in the left prepontine area, right up against my left 5th cranial nerve. It’s too close to my brain stem for surgery, so it’s me and my tumor trying to figure out how to exist. So I figure out how to back myself up with notes, alarms, or timers.
I think human beings, especially Americans, struggle to process time. In America, we typically use the Gregorian calendar based on the idea that it’s 365.25 days each year, based on solar cycles. Other countries, and some businesses, use the Julian calendar. I learned that when I worked for Prudential Insurance too many years ago for me to tell you when it was.
I even understand military time and that Americans seem to write the date differently. October 15, 2017 vice 15-10-2017.
But…brain tumor or no brain tumor, what would you change about how you handle abstract ideas like time if you didn’t know what the rules were?
I have been pretty quiet on my blog for a bit now. Some of it because I’m going through stuff in my head, other reasons just being that I haven’t had much to report on my illness. Last year I couldn’t seem to stabilize, this year I have.
But it’s July 17. And aside from the insanity of the world and my country’s “leaders”, losses (George Romero. You will be missed.), and life, the universe, and fish; July 17, 2001 is the date my before became my after. Post part-of-my-world-didn’t-make-sense, post PTSD, post Rainbow baby, sixteen years later I am a very different person. And so I usually stop and take stock on July 17.
The stuff I’m going through in my head? I’m trying to figure out how to want to live again. This is the kind of thing I haven’t touched on in my posts about scans and tests and insane amounts of radiation. We talk about the scans, the tests, the treatments, surgeries, recoveries, and medications of chronic illness, but what about when they tell you it’s inoperable? Incurable?
I got told I have a relatively small, most-likely benign tumor in my brain *but* it is inoperable, incurable, post-treatment (radiation) stable, but I’m still a brain cancer patient. I spent two years (give or take) preparing to die.
Inoperable, chemo’s not an option, radiation means scary complications are possible, and in some cases (brain edema) expected. I fought with my oncologist and refused steroids because the patient cases I read about them scared the hell out of me. High dose radiation scared me, the specific steroids for the brain edema scared me more. So I fought with him and fought through three weeks of brain edema and a trip to the ER that required meds, fluids, and a surprisingly high dose of potassium before they would release me.
Three years later I’m pretty stable. (aside from the awesomely clumsy episode of me dropping cleaning supplies on the bridge of my nose yesterday…….frickin OW)
Last year I couldn’t seem to stabilize. I had MRSA in my lungs and throat and spent almost an entire year coughing up green yuck. Another trip down the stairs. Frontal lobe spikes on my EEG. This year, I finally got my lungs back, I’m still clumsy but the stairs and I have an understanding for now, and I can (usually) finish a sentence.
My body seems to take a year to get through something. Instead of having pneumonia, getting antibiotics, and recovering; I had pneumonia, lots of antibiotics, 3 different inhalers, and eventually in-home oxygen when my O2 levels dropped under 86% walking around my doctor’s office before, about a year later, I recovered.
Dunno why. But a lot of things take me a year.
Throw an artificial hip (10 years ago this November), a brain tumor, and crappy MRSA lungs at me and I start making peace with my the great hereafter. Or something along those lines.
We talk a lot about life with an illness or during a treatment, but we don’t mention staring into the mirror and making peace with your mortal coil. But it does happen, and we should know we’re not alone. I should know I’m not alone.
So I’m kind of, sort of, coming out the other side of that. I’m thinking this stupid thing won’t kill me. At least not yet.
So while I’m pretty quiet on my blog, my journals show I’m still thinking, writing, struggling. I’m still living.
June and July are funny months in the Xunnie household. There’s always the changing of the seasons, graduations, etc ; but we also have the anniversary of my Dad’s death coming up (06/23), what would have been his birthday (07/06), and the anniversary of what I call My Line in the Sand(07/17).
And now, three years into this, we have the anniversary of my diagnonsense. My brain tumor was found because I started falling down the stairs as some kind of a hobby and I complained to my pain docs about more headaches, so she wrote me a referral to a neurosurgeon who ordered the first MRI. I then saw who has become my steady spot in all of this, my neurologist, who then made a face at me and ordered a second scan. And then it was confirmed on June 20, and the next thing I knew I was headed up to Georgetown for half my Summer.
Yes, THE Georgetown hospital. And the coolest thing (is there is such a thing)? My “team” included the HEAD of Neurosurgery and the HEAD of Radiation Oncology. I don’t know how I got so lucky, but I must be an interesting case and I’m grateful for it. But yeah, that was a tough Summer. My son was deployed at the time, so I couldn’t tell him all hell had broken loose and inside of 30 days we signed a contract to have our house built, my dog died, and I got diagnonsensed.
June 23, 2012 my Dad lost his fight with cancer and June 20, 2014 I got diagnosed with a brain tumor.
The point of all of this is:
- I did, in fact, get this year’s results and the tumor is “stable with no change in size”.
- I realized today as I was telling my oldest daughter a story about the time my Dad came to Michigan and they didn’t know what to make of him that I have all these images and memories that my kids don’t get to see the way I did. They’ve heard the stories, but they were so little, they don’t remember.
The story I was telling my daughter was: Grandpa was so dark skinned and we’re all fair, blue-eyed, etc so when people see my kids run up yelling “Grandpa! grandpa!” they don’t know what to think. When he visited San Diego, they thought he was Mexican. When he went to Egypt (for work) they thought he was Egyptian. But in Michigan, USA, this lady could not figure out what was going on. (It sounds terribly racist, but when you see his reaction, it’s just funny!) So, as she’s following us through the grocery store and staring, he turns to me and says “if she doesn’t stop it, I’m gonna run over there and kiss her!”
No, he didn’t take himself too seriously.
My daughter smiled and said “I’ve always heard the stories, but I don’t remember….”. All I could think after she went to do her thing for the rest of today and as I’ve gone through my day was I wish I could close my eyes and show them.
Buzzfeed famously has all these ridiculous “What Superpower Should You Have?” or “If You Were in the Marvel Universe, Who Would You Be?” quizzes and lists, but if I had a superpower, I’d want to be able to close my eyes, hold your hands, and show you a memory. I have all these amazing memories and with the 5th anniversary of his loss coming up, I’ll write another blog with some of those. But, God!, what I wouldn’t give to be able to show you.
Hear the music, feel the wind, feel the joy, see the laughter. How much would you really love to be able to do that?
I have been terrible with up dates, I know.
“hey Xun….whatcha doin? How’s the brain? Seizures? What’s the little fuuuuhhhnny thing doing in there anyway?”
Well, What I DO know is that
Percival is still hanging around. I have images from this year’s scan that were done on Wednesday, June 7.
Good news(ish): He IS still there and not like the size of a grapefruit, and if he’s grown, it’s not much. At least I don’t think so….
Xunnie, a deviated septum, Percival (the kid loves this one with the eyeballs….)
So, not a lot to report on just yet. But I do think I have a demon in my brain….
Should I be worried? Anybody got any Holy Water hanging around I could maybe borrow for an experiment? =D (Should we name the demon?)
I am hoping to get the report for this MRI in the next few days. I did explain that I was waking up feeling like the bed was shaking a couple of times, and that I had managed to scratch my face on in my sleep. Dysphasia ruled neurologic in origin, aphasia as well, EEG better than the last one, minor changes to my meds.
So….yeah, updates on Percival and me in a couple of days hopefully. Until then…..
we start with what’s been stuck in my head for 3 days….
Along with stuff in the back of my head, on my playlists, haunting me….
There are a lot of memories intertwined with allllllll of the music on my phone, my hard drive, and hell even still the CDs I shepp around!
Xun = Music, Music IS Xun.