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.
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!
Fair warning, this one’s been kicking around in my head for a while, so I decided to go with the brutally honest approach. Not something we humans do often or well…..so look away if that’s too much. I hope you won’t because I think we all could use a little introspection sometimes. I know I can. And maybe you’ll learn something, or ….well, I dunno something good.
Oh, but first updates:
Dr Lungs has given up on me. I got the results of my PFT (“normal” or whatever that means), and got told “dysphasia patients have this issue sometimes. The coughing, the breathlessness, the productive cough; it comes with the swallowing dysfunction. Your next step would be a speech therapist for occupational therapies. Good luck.”
Yeah, same to you too buddy. So, this is how it ends. I guess I choke on a spoonful of frosting or fall down the stairs. (Or both! I’m an overachiever!)
Appointment with pain doc next month, appointment back to neuro in May to keep an eye on the tumor. And now it’s time to go bug my PCM because 2 of my other docs have told me I quite possiblely have EDS (Ehlers Danlos Syndrome). It fits. With my prior dislocations and hypermobility (I can cross the bones in my forearm), it’s a distinct possibility I’d finally have some answers.
Now on to the harder stuff to write about and the reason for the title. In the cold light of day, I’d pull my sleeves down, look at the floor, and mumble “I’m fine.” I’m a solitary person, terribly introverted, and unusually prone to stoicism.
But in the quiet dark, late at night, away from too many questions and judgements, I am self destructive. My arms bear the scars of me trying to take my pain out on myself. Those scars are from many, many years ago but when I am overcome with grief and pain I hear the girl responsible for them whispering to me.
Last week I put out a post that was password protected because I needed to get pain out and away. But I wasn’t sure I wanted those words just out in the public eye. And the next day, the cold light of day spoke up, and I deleted it. I guess you could say this is the follow up.
Because I have been chewing on, pondering, turning it over and over in my head, contemplating grief and mourning.
Thirteen months ago, on January 20th, I got the phone call telling me we had lost my sister in law Brenda. But what I would come to learn by the end of that day is that I had lost 2 people.
Brenda died, and someone I love very much walked out of my life….threw me out of his life, without a discussion, or an explanation, or a chance to apologize. He was angry, he still is angry, and for the last 13 months I have staggered through denial, and bargaining….pleading with him to talk to me, along with depression weaving its way through the days and weeks and months. Bouncing back and forth between 3 of the 5 stages of grief. Mourning a loss because of a change, not a death.
I have spent 13+ months now turning the whole thing over and over and inside out, trying to understand. Patiently waiting for a chance to talk, to straighten it all out, to apologize. I’m trying to understand.
I know my culpability in the whole situation. I would be the first one to tell you how profoundly flawed I am. The mistakes I have made stay with me, the times I made the wrong call, the moments in time I wish i could go back to and make it right, make it better. I know I am flawed. I know when I’m wrong.
But I also know that when I know better, I try to do better and be better. I learn. I work at it. I try. I hope. And I love completely and unconditionally. I am not perfect, but I am real, and I am honest, and the mistakes I made were never deliberate, never meant to hurt someone, never meant to hurt him.
I spent a long time angry at my mother for my childhood. But as I grew up and went on to have kids of my own, I realized in the process of letting go and forgiving her that 1)when she knew better, she did better. No one can fault someone for not knowing better. and 2) I wasn’t exactly the easiest kid in the world to raise. My mom did what she could with what she had.
I got caught up in the searing pain in my chest as I heard the words that my son didn’t want anything else to do with me. The agony of watching him “block” me on all social media, refuse any contact, or allow me any part in his life. I got lost in denial, bargaining, and depression swirling around me and through me.
The pain, the hurt, the visceral agony in my chest gave way to disbelief, bargaining, pleading, hoping, writing to him, apologizing. Months rolled on, I survived 2016 (mostly), another holiday season…a little more rejection.
The anniversary of Bren’s death reminded me I had lost him too.
And oh Gawd! this hurts.
The clock marches on, the sun rises and sets, another cycle of the moon, I keep thinking.
After 13 months I move forward, just a little bit. baby steps.
I forgave my mother. I own that I was not the easiest damn kid to raise. I forgave my father for walking out and choosing over and over to stay gone. When he died, I was at peace, because I had forgiven him.
My husband cannot seem to get his relationship with his mother to move forward at all. She can’t or won’t grow or try. She won’t apologize. They can’t connect.
I am living with an inoperable brain tumor, but that’s not what drives me to try to learn to be a better mother. I try to learn how to relate to my kids as they get older and my role changes. I apologize when I’m wrong. I try. I hope.
I know I have made mistakes. I know I made the wrong call sometimes. I know I am nothing close to a perfect woman, wife, mother, daughter, sister, or friend. I do know that.
And I guess embracing that means I move just a little bit further as I grieve a change. Is it anger? I’m not sure. What I do know is I have reached a place that tells me, that even with all of my mistakes and imperfections, there are some things I don’t deserve.
I don’t believe that I deserve the way I have been treated. That’s not an easy sentence for me to type and put out there. But it is the truth.