I actually have been working on another draft about life, the universe, and everything as I come up on four years since I was diagnosed with a brain tumor, but last night I had a melt down and went into crisis mode.
I see my pain specialist more than any of my other doctors and because I live in a state that is making progress, but still leaves a lot of room to be desired on the part of chronic pain patients, I get my scripts filled every 28-30 days. I have five scripts that have to be filled every month and another three that get filled every three months (muscle relaxers, synthroid, etc). Of the five, I have three that *must* be filled every 29 days (give or take a day).
I follow all of the rules. I sign my “contract” every year. I jump through all the damn hoops pain patients have to fluffing follow. I accept that the doctors, the pharmacists, and my insurance all fluffing track me. I have had the same pain doctors for over 6 years. I had the same pharmacy until last year when insurance made the choice to kick CVS out of our plan, so I went back to Walgreens. I live in a fairly small town, so I see the same people every month.
I follow all the damn fluffing rules!!
So, when I went to get my nighttime doses of my meds last night and realized I do NOT have the number of long acting pain pills I should have I panicked!
I don’t know why I didn’t notice sooner, but I last filled my scripts about 10 days ago, so I was missing about 2 weeks worth of pain meds. I freaked the **** out. If you know what it’s like trying to fill a schedule II script, you understand the fear that comes with not having your meds or being able to account for it. The rules are: we don’t give a fluff if you lost them, flushed them, or had them stolen. YOU are responsible for your scripts and your meds, so buckle up.
The one fear my husband has is not that I’ll have a seizure halfway down the stairs and the cats don’t know CPR, or that I’ll forget where I live and not be able to drive home, or even chocolate milk. (seriously, how many people almost die by chocolate milk? …..don’t answer that.)
It’s that something will happen and I won’t have my meds. Because that means withdrawal, and we both know I ain’t surviving that. Judge me, but my pain scripts mean I can be a “theatre mom” for my youngest. Or clean my house. Or get the grocery shopping done. It means my husband can work, and travel when he needs to, and I can run my house and be a grown up.
But suddenly, I did not have the ability to survive until my next script would be filled. I collapsed in fear. I didn’t even cry myself to sleep as I tried to figure out what to do. I just sat there in terrified silence, contemplating ….well crisis mode.
Fortunately my husband figured out that he needed to go talk to the pharmacy because if their pill count was off I could prove my script had not been filled properly. He was at the pharmacy this morning when they opened and went over everything with the pharmacist. They checked my file, checked their pill count, and discovered they were “over” as many pills as I was missing. It ended up being a relatively easy fix with a lot of apologies from the pharmacist, and the whole thing was over within 12 hours.
This is the world I live in. This is why I jump through the hoops, and follow the stupid rules. So that in the event something like this happens, I can show that I am a good and cooperative patient. Today I’m still feeling a little fragile, and my wrists are a little sore from being in a dark place. (No, I didn’t actually hurt myself. But I was definitely in crisis.)
I live in a very small box, with a lot of rules, and not a lot of room to fight back. This is the reality of being a chronic pain patient in the US right now.
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?
There’s a lot going on in my life right now. My oldest is living with me for a bit and getting her classes and clinicals set up for the upcoming semester. She has all 5 of the next semesters planned out and then tah-dah!! She’s off to be a radiographer extraordinaire! And my youngest has decided to make the leap into public high school, so that’ll be the biggest change for her (and for me!) (Seriously….ahhhhhh!!!! If you want me, I’ll be in my blanket fort!!)
I’ve shared all of this before, but on the heels of all this stuff, it also be time for the yearly check up. Kid goes tomorrow, probably need a Dtap booster and we want to get the Gardasil and she’s a happy and healthy kidlet, so she’s gonna be just fine!
Me? Well I started today by getting my lazy-wanting-to-crawl-back-under-the-covers bootie up and over to the clinic so the could pull my “fasting labs” before MY yearly check up next week. So that was 7 (seven!) vials they pulled today! I’m pretty sure I should have had a cookie and some juice before I left.
But I am seriously the world’s easiest stick:
I was just surprised it was so many vials! But I’m an easy stick, no rolling veins or trouble finding one. Stick, get the blood, BOOM done!
Then after dinner, I was sharing news about my friend’s dad had a heck of a scare last week and I spent most of last week praying for her and her family and thinking “I just really don’t want you to have to join the club.” (Grey’s reference)
There’s just so many of us that have lost our dads already, and far too many of those come from cancer, and I just…..I believe in miracles and I wouldn’t want that experience for anyone.
So I have been thinking about my friend, and sending good energy out in her direction.
I’m still technically a brain cancer patient, but I’m stable right now, no changes etc. But my friend’s Dad had a really scary afternoon last week and came back from 2 (TWO!) cardiac arrests and was busting out of the hospital 4 days after and asking to go to the local VFW Friday Fish Fry. And the whole thing just sat me down.
I’m still a brain cancer patient, but I’m stable and still fighting for my independence. I’m down to 3 doctors these days and doing much better than a year ago (when I had MRSA). I just mean I understand both a patient, and as a daughter who did lose a Dad to lung cancer 5 years ago.So I’m sitting in my living room, mulling things over, and feeling like I should share and I look up….
A Sailor’s Wife on the wall, a gift from my sailor when he retired out of the Navy after 24 years. My incredibly cool cherry blossom tree card I got for Mother’s Day, Deadpool…..because Marvel, and our newest incredibly cool thing in the house: a 3D printed moon that lights up from the inside.
Sometimes I just get sat down bust by looking around, thinking about stories we share with other people, or they share with us. Seeing something you can relate to…..sometimes there just are no words.
But this week I found some perspective, something to be grateful for, a lot of hope for,a couple of tears, and a question for myself.
My friend’s Dad went into cardiac arrest twice , he got CPR and the paddles and he fought back. He came back. Could I have done the same thing in his shoes? I’d love to reply to that question with a snappy “yes!!”, but I’m not so sure.
If anything, it certainly shows that the will to fight is just as strong as any chemo, surgery, or medical intervention. Don’t get we wrong, one of the reasons he survived was because he was in a place the allowed him to be treated while they called the ambulance and got him to the hospital.
But hearing how things happened certainly gave me pause. I’m a brain cancer patient too, but I am stable and doing pretty good right now. So I send my heartfelt prayers, and love, and hope to that family. And I hope I keep in mind that the will to fight is just as important as any IV, scan, drug therapy, or surgeon.
Sometimes, the fight seems it might just be a little bit more.
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.
Happy Mother’s Day to you Spoonies in America that have spawn.
Happy second Sunday in May to those that aren’t in America, don’t have spawn, or are choosing to ignore the muss and fuss today. And gentle hugs. And if someone hasn’t told you that you’re awesome and they’re grateful you’re here, I am. You’re awesome. And I’m grateful you’re on this rock swirling through space with me.
Happy Spring Sunday in May to my sisters, spoonies, fellow strong chicks, and amazing people that need (or don’t need) a day to celebrate or just a reason to remind you that you’re awesome, loved, and appreciated!
Am I being too cheerful or cheesy? I probably am, but I’m also aware that it’s easy to get lost in the everyday and it’s nice to be reminded that you matter. Call it “Xunnie’s learning that she’s lost too many people not to say the good stuff when you can”. Or just “be good to one another” if the first one is too many words.
Also, quick side note, especially if you’re a girl: I just watched “Embrace” on NetFlix. I had donated and supported Taryn’s Body Image Movement way back when it was a picture that went viral and inspired a kickstarter and after finally having the chance to see the result of her hard work, I am honored and grateful to have watched that with my youngest daughter and shared the message.
So, love your body. Even if it’s pissing you off today or it refuses to cooperate. It’s the only one you’ve got. At least right now. And go add Embrace to your Netflix queue.
Xunnie, right before bed a few weeks ago. This is me, no hair done up, no make up, no filters, and no muss or fuss. I spend a lot of time pissed off at this ridiculous body because I can’t run or dance anymore. Because it hurts. Because I don’t have as much control as I’d like anymore.
But in this picture I was actually feeling pretty good that day. I had gone for a walk and it felt good to get out and walk around and look at some trees in the Spring. It was a beautiful day out in my corner of the mid-Atlantic US middle of nowhere, so I went for a walk, and I was feeling pretty good that day.
So happy Mother’s Day, happy middle of May, and gentle hugs.
Oh! I know I have been shit on posting updates. Partly because there’s not always much to share, partly because last month was a little crazy busy for us. But it’s almost time for my yearly scans so I will have updates soon. I have been having some symptoms that could mean my tumor is progressing or growing and I have been putting off going in to get an EDS diagnosis confirmed. But my lungs are slowing healing and I’m not coughing as much anymore, so I’ll take that for good news right now!
Updates soon. I promise!