I was sorta, half-way, mostly in my head, working on an end-of-the-year review but the insanity of the last couple of weeks (both in the world and just in my little corner of it) has pushed me into my stoic, quiet, updateless place.
2018 was the first year since I have been diagnosed with an inoperable brain tumor that I was stable enough that I actually did not spend any time in giant, noisy medical machines. No MRSA, no trips down the stairs, no major choking incidents. I’m not convinced I’m seizure free, and I forget things like it’s my job, but I am stable enough that I was able to convince my neuro to let me ask pain management about shots in my neck again.
2019 starts with me mostly stable brain-wise, in the middle of a couple of trips to the dentist, somewhat overwhelmed by life right now, and contemplating going to the Women’s March in DC on the 19th. So I am doing what I do and retreating into my head and my writing. I present my latest efforts from my journals…
The Night After Christmas
‘Twas the night after Christmas
and all through the house
not a critter was stirring
Not even Daisy with a new mouse.
The stockings were rehung
by the fireplace with care
Empty now of the treats and goodies
St Nick had shared.
The kids were all snuggled in
tight in their beds
with visions of such a wonderful day
bouncing through their heads.
And Dad in his pajama pants
and I wearing a messing bun like a cap
were heading upstairs
dreaming of a nice, long Winter’s nap.
When all of a sudden I heard
a bang! and such clatter
I tumbled out of bed
to go see what was the matter.
I hurried down the stairs
as I followed the noise
When what to my surprised eyes did I find
but a battle of toys!
Wow Daisy! Oh Phoebe!
And Honey-Girl too?!
There’s boxes and bows everywhere.
What did you do?!
As I stood and surveyed
the mess in my living room
I took a deep breath and wondered
“should I go get the broom?”
Just then a wondrous sight
caught the corner of my eye
I looked across the room, through the back window
and gazed at the Northeast night sky.
The snow had just started
to float down from the clouds
Clean, fresh, white sparkling snowflakes were floating down
coating our little town without a sound.
Soundlessly I turned
and gazed upon the messy room
Among those boxes and bows
I saw the joy that disappears all too soon.
Our family had been gifted
with such a wonderful day
and so our kitties had taken
their chance to play!
All those boxes and bows
and scattered tissue paper
would be remnants of cherished memories
to call upon later.
Seeing my furry little predators
attack all the boxes and bows
just added to my joyous memories
as they peeked out from the piles
with their tiny nose!
With a flick of a tail
as they dashed out of sight
I chuckled to myself and whispered
“Merry Christmas, girls! I love you. Good night!”
~ Xun, 2019
I hope you had joy in this last holiday season and I send hope and light and love for health and happiness in the New Year!
❤ ~ X
When I’m overwhelmed or there’s just a lot going on in my life, I tend to get really quiet. Yes, I’m aware that when it would make the most sense for me to write it out, cry out to the world, I tend to shut down. Retreat into myself. I’m aware. I still call it a survival mechanism. A leftover from a tough childhood.
The things that hurt…
…on the day my sister (in law) died, my son kicked me out of his life and it’s taken me about a year and a half to get something that almost resembles the beginnings of a start. But he’s my son, that’s my boy. I’ll take the pain. There’s no way I’m walking away.
…I miss B (my sister) all the time. I wonder if I could have done more for her. I talk to her a lot. Which sounds like I’m just a leeeetle bit crazy. But I believe she’s around. I think….I hope that we can have these conversations and she hears me and I can find bits that tell me we’re communicating.
…I miss my dad. I miss my dog. I like to think they’re off in this amazing better version of here. And together.
…And my biggest secret. My wedding anniversary is supposed to be tomorrow. I mean …it still will be. The date marking an event that happened 18 years ago will still exist. But mostly only because I’m still alive, sometimes against my will, and I’m still here. I packed up and left for about a year, 10 years ago. But all hell broke loose in my life and I got scared. I retreated back into a life that was familiar. I told myself I was happy.
Then I got sicker and sicker….
Chronic pain, complications from my hip replacement, pneumonia in both lungs with O2 stats dropping to 86%,leading to in home O2 for 3 months. More surgeries, more treatments, all while a full time college student, all while moving to and through 3 different states, all while trying to make a marriage work and take care of my kids and my family.
Tomorrow is my wedding anniversary, 18 years ago I stood at the base of the Ko’olau Mountains and recited words from an event I wrote.
Now, I don’t even know what “thing” (silver? cotton? silk?) the anniversary stands for. I don’t have a card, or a gift, or a plan. Because I am unhappy. Unhappy as in I go to sleep more nights than not hoping I don’t wake up.
I’m sorry to think that for my mom and my kids, but I just feel like my reasons, my purposes…are done. They’re over and I can go now. I mean I’ve lived through 6 surgeries, septicemia, a brain tumor, radiation, and MRSA . And 2 blood transfusions. When is enough enough?
2016 was an all out, no holds barred suckfest. Universally.
But 2017 leaves me feeling like my life is upside down. I’m unhappy. And I don’t fight…..well, with anyone anymore, but my husband in particular. And very few people know that or know why. But the fight has been chipped away, and there’s not much left.
So, yes, I am very quiet lately. I am struggling. I am unhappy. And those are the kinds of things that leave me retreating into myself.
It’s been a minute since I sent out a missive. When a lot is going on, I think I tend to step away from my blogging, fill it in with journaling, but my introverted nature takes over and I get quieter.
Where to start? Well, my labs from this year’s physical came back and Doc PCM was very pleased with my numbers. GGT came down by 110%, just a hair on the high side, but trending down so more more freaking about about liver function panels, etc. Seem me and my liver are mostly fine! So that was excellent news! Vitamin D, B12 excellent levels, cholesterol came down. The last bit to close that business out is a retest of my TSH and T4 in November to see if a change in my Synthroid might be needed, and that’s easy.
I had the requested thyroid ultrasound, and the report notes ” no nodules seen, finding consistent with Hashimoto’s Thyroiditis.”
So the next adventure will be me submitting a request for a specialist (Rheumatology maybe?) for pinning down that EDS diag-nonsense. According to my PCM (and therefore she who is the primary traffic director) it boils down to a lot of blood tests and my plan of care won’t change much, but (like I told her) my doctors like to have a diag-nonsense they understand. It doesn’t change my life, my care, or how I’m managed right now. I already have “benign brain neoplasm”, “left total hip replacement, Nov. 2007”, and a couple of other CRPS-type diagnononsense, so I get it.
But I know the docs like to have something to pull together all of these different surgeries, pain management, brain tumor, implants, etc. They like it when I have a diagnosis they understand, even if it doesn’t change much for the patient. And with a few of my doctors bringing it up to me, it was worth diving into research.
I don’t do Dr. Google or WebMD…..I read academic papers, case studies, research papers. And when so much fits, and I have 2 of the docs I see the most saying “yeah, go check it out.” I requesting the referral. So, that’ll be my next project.
So I guess that’s all the Xunnie medical updates:
Yearly MRI w& w/o contrast on my brain: Tumor is still there, stable in size. kthxbai.
Yearly physical: good labs, retest T4 & TSH in November
Thyroid ultrasound: measured, noted “Findings consistent with Hashimoto’s thyroiditis. No discrete nodules noted”
Still a brain tumor patient, still interesting to ortho surgeons. But strong and doing better this year.
My youngest daughter starts high school tomorrow and I haven’t quite figured out if and/or how much Imma freak OUT.
It isn’t just my youngest starting high school, it’s just that my youngest is starting public high school and I have been Homschooling her for the last 8 years. So yeah. Big change! BIGBIGBIG changes for both of us.
So after 8 years, it seems I am out of a job, relegated to “just mom”.
It’s good stuff for her, and I am so excited for her to make friends and join clubs, all the good stuff out there!
But as for me, in the quiet, at the end of the day, I stare at the wall and I wonder. Do I freak out? How much? Should I?
My youngest is my rainbow baby (and if you get that, I am so very sorry), she walked early….9 1/2 months old, 2 feet tall toddling ….walking all over the house.
Now at 14, she’s thin and tall…just a couple of inches taller (*spoiler alert: I am not, repeat: NOT surprised my kids taller than me.
And in my middle of this, I try to remind myself to be grateful, #blessed, we are thankfully able to get through all this.
I don’t have to look far to see that people are struggling.
Danny (my MIL’s son) had to have a quadruple bypass, then he had complications.
Nick, a family friend, motorcycle wreck last week , had to have surgery and has rehab and PT coming up.
Another friend , Danny, had ACL surgery.
Jeff had rotator cuff surgery,
Destiny got diagnosed with a brain tumor and is getting fitted for her mask for radiation therapy (a process I’m familiar with….I did it 3 years ago this week!),
and hub’s Aunt Connie passed away (sudden heart attack).
And finally, one of my favorite people just had her Dad move back in. He has advanced lung cancer. He’s a hell of a fighter.
I see all the struggles and I know how hard some of these things are to fight through.
My heart hurts. Reach out. #Loveoneanother. #Connect. #Support. Don’t wait…..tell them they’re important to you.
Hugs, love, positive energy…..<3 ~ Xun
I’m just having a day ….or something…..this week.
I’ve been blue for the last 5 or 6 days. And when I say “blue” I don’t mean maybe feeling a little sad or down. I mean I am literally, actually blue.
I’m kind of used to it. It started about 9 years ago after I had pneumonia in both lungs 9 weeks after my hip surgery. I can feel it happening, and sometimes it’s stress (I’ve actually had retired-chief look at my hands and walk away in the middle of an argument), or weather, or exhaustion. Or sometimes nothing at all.
I’ve seen more doctors than I can count about it and since these days my pulse ox seems to stay above 95%, they like to just throw it in the Raynaud’s bin and move on to stuff like me choking or the annoying tumor in my brain.
Sometimes it’s not that big of a deal, and I come up with all kinds of colors between pink (I’m pretty sure the color I’m supposed to be) and blue….or purple. The running joke in my house is that I should lay on a table outside for a Halloween “decoration” with just my blue feet sticking out and scare the crap out of people. Yes, we’re an interesting bunch.
I’m just annoyed because I have been really, really blue for the last few days. It’s probably all the crazy weather we’ve been having and today we have thunderstorms moving in and through my area, and that’s almost a surefire way to trigger a blue episode in my hands and feet.
So between my blue fingers and the fact that FedEx lost a box I was supposed to have delivered yesterday, I’m just irritable. (The box was marked “delivered” at 6:01 pm, EDT but unless it’s invisible it’s not on my front porch.) Side note: I called the company and FedEx, got a refund, and put a trace out, but the FedEx delivery for my area are just idiots anyway.
And I’m kind of chewing on the fact that I think I might have made my mom cry yesterday but I didn’t mean to. We were talking about my tumor and I said something about how long I have left and she had to go, but I think I upset her. Because I’m an asshole even when I don’t mean to be.
And fuck cancer.
My outfit today. Because Deadpool. And because fuck cancer.
Aaaaaand I’m back to coughing shit up. The cough has never gone away, and my pulmonologist gave me “dysphagia, related to trigeminal shwanomma” and blew me off with “sit up when you eat and take smaller bites”. I don’t have a $200,000 medical degree but I could have told you that, so whatever.
Like I said, I’m hostile today. And this is all the noise in my head.
Anybody know what it means when you cough dark green….something up?
I’ve been pretty quiet lately. Mostly because I feel like I’m up to my eyeballs in trying to understand and survive the new version of Sims~The Insane America version. And, based on the blogs I have seen, and the spreading silence of the others, I’m guessing a lot of people are doing the same thing.
But, I saw my neurologist today, so I figured I’d post an update (and I can share the song I have had in my head for weeks now!)
So….oh, back up. Actually I have a funny story and it sort of relates to my new reality of “Is this brain tumor or not?”.
Last night I was making dinner and …..well, I had to stop for a few minutes and ended up calling hubs (who I knew was already on his way home from work) and …
ring……ring “Hey baby, what’s up?”
“Oh hey. Um, how far out are you?”
“I just pulled into the neighborhood, why?”
“Oh……I may or may not need a stitch or two…”
….”See you in a minute.”
I was slicing mushrooms and the chefs knife decided I was a mushroom too.
Fortunately it wasn’t big or too deep, so we actually went over to urgent care. They said yes, I needed to come get checked out, but instead of 1-2 stitches, the doc elected to do surgical glue.
So I am being a little bit whiny today because I tried to chop the end of my finger off. And ow. And 1/10 do not recommend.
So, forward to today. I had a follow-up with neuro after my swallow test last month.
Mild Dysphasia. Because of brain tumor or not? Hard to say for sure, probably yes, but stable for now. So I tell Dr Neuro I’m having more memory issues. It’s worse if I’m forgetting something and I start to get flustered or if I’m already upset. But it’s a thing, and I’m starting to write things down and back myself up with support people or apps/phone/tablet/etc. So she asks me “What don’t you remember?”
Ummmmm, I don’t know. I can’t remember. Anyway, she followed up with a memory (Alzheimer’s?) baseline test and a quick neuro exam. Declared me stable (ish) and gave me 4 months before I have to see her again, and bounced me back to pulmonology because I’m still coughing, my voice comes and goes, and occasionally I have a productive-ish cough. It’s gross and hanging around since MRSA last April.
So I go see pulmonary dude on the 16th and plead with him again to please just do the damn bronchoscopy. Please? The coughing thing is kind of a pain in the ass.
So, Xunnie and her brain tumor are mostly stable. A little chopped up, kinda whiny sometimes, still coughing, but…..stable.
And I have had this song in my head since the Women’s March.
(But I kinda love it!)
I tend to write after I’ve been chewing on something for a bit. Sometimes it’s just that day, or I might have an idea chasing me around for a few days, and occasionally it might even take me a few weeks to find a missing piece. And the the blog comes together and the typing starts. But, as I’ve said before, I am always writing. I have journals all over the house and the beginning of my third start of a book in a folder on my desktop.
Words are what I cling to the most.
Today’s musings come from the idea that occurred to me today. I am really good at reporting on the scans and tests I have. I share results and treatments. I describe surgeries and have shared my experiences in some pretty incredible hospitals. It’s easy to stick to the facts. Share the scans. Describe which specialist is working on what. It’s easy to hold on to the logical, scientific….sometimes cold, facts and truths of life in pain and treatment for an inoperable brain tumor.
It’s easy because then I don’t have to share what it’s like from the inside. And sometimes I tend to do that. There’s a bucket of reasons.
I’m an only child, and used to being by myself.
I cling to cold, hard logic and science as a defense mechanism.
I figured out a long time ago that it doesn’t matter if I’m scared or insecure and those inside feelings don’t have to match the outside demeanor.
Which means I am really good at appearing aloof, cold, and detached even when I might be scared, struggling, or hurting inside. But you’d never know it.I have a really great resting bitch face.
I was always new as a kid, changing schools just about every year. And always a little bit younger than everyone else, and smaller. I was 4’10” when I started high school! So I figured out that it didn’t matter how scared or shy, insecure, overwhelmed I was feeling, it only mattered what the image I put in front of them was. It doesn’t matter if I can or can’t kick your ass, just as long as you believe that I can.
I have been told by people that eventually became close that at first they thought I was “cold, aloof, stuck up”. I hope I’m really not any of those things, but I do know I am very good at putting on an appearance.
All that being said, today I realized I don’t write a lot about what it feels like in here; brain tumor, artificial hip, and all. Truth be told it occurred to me because I have been a frickin bitch about my manchild having a stupid cold. (Mostly because the last time we did this, it was a thing. FOR MONTHS)
I have no immune system. This is well established. Start with autoimmune, throw in some radiation, and sprinkle a little of the MRSA I had in my lungs for 2 months last year. No immune system. No, none, nada, no-thing, nien, NADA. My family members get a cold…..I get pneumonia in both lungs and end up on in-home O2 for 3 months.
However, it is cold-and-flu season in the NorthEast. And people are stupid. So after my oldest daughter told me she had a nasty cold, I knew there was one lurking in our town. (She doesn’t live with me, and she’s better now, but still….)After 2 nights of sleeping next to Mr-sounds-like-a-freight-train and not even my earplugs were helping, he declared he did feel a little…sniff, sniff….maybe a little congested or something. And went to go sleep in the spare room. (Or as he put it last time “I gotta sleep in frickin Siberia!!”)
By last night he sounded like shit, and to my delight, today I got up to him “I decided to work from home today!!” I don’t let him within 5 feet of me. Don’t touch my stuff, don’t breathe near me.
It might appear that I’m just being a bitch, but…
I am very sick. The symptoms of my tumor are progressing. I’m having a harder and harder time remembering things and I struggle with swallowing and/or choking at least once a day now. The choking thing scares the shit out of me. But you wouldn’t know that because I’m just being a bitch.
So yeah: the outside is Xunnie being bitchy because retired-Chief-manchild has a frickin cold (and men are such babies).
“Don’t touch my stuff.”
“Go…..away. Go stand over there.”
“Go take your cooties somewhere else.”
The inside? I’m scared. I’m struggling these days anyway. I have a hard time swallowing at least once a day. I still have that stupid cough. It’s time to head back to pulmonology and plead with them to just finally schedule the broncosopy because I still cough up green uck. Between the rise in clumsiness ( I HATE stairs), the increasing trouble with my memory, and the everydamnday choking thing, I’m thinking when I see my neurologist in 2 weeks she’ll probably be thinking more scans wouldn’t be a bad thing. We don’t know how fast this bad boy is growing yet.
So, the inside and the outside don’t match. Don’t let this bitchy face fool you. I’m hurting, I’m scared, I’m spending time making my peace with dying.
Outside I’m cold and kinda snarky. Inside, I’m just a little girl that’s been alone a long time.
Okay, I totally hit a wall yesterday.
A little history….hubs is a retired Navy Chief, but the running joke is that I’m the one with a mouth like a sailor. Until last year, I was the one with the tattoos (he has one now) and piercings. And the mouth. But I’m a college educated lady, thankyouveryfuckingmuch. And typically I’m pretty good about my language. Until I get pissed off-fa-fah! (Did that come across as harsh? Because I was trying to inject a little bit of humor, but I tend to come across as a little harsher than I mean sometimes.)
It’s been an interesting week. Hubs returned from 13000 miles away, kid and I finished one set of classes and signed up for ASL 2 at the local community college (I’m really enjoying learning American Sign Language!), and inspired by Kara‘s recent turn to fuschia hair, I dyed mine London Lilac!
Because purple hair. And Suicide Squad. =D
So, not a bad week, yes?
Until the end of the week started piling up. And now I hate all of my doctors.
I sent an email to my PCM a couple of weeks ago because it was time for my yearly thyroid counts and refilling of the synthroid, because autoimmune thyroid. Only my endocrinologist has since retired and canceled my appointment. So I sent off a message: I need my TSH & T4 tests and my script refilled, do I need to find a new endocrinologist or can you do that because I’ve been stable for over a year?
I get a message back: You need yearly labs and to schedule a physical here. Oooooookie. Whatever. Baby PCM doc graduated med school in 2011 and she’s way, WAY out of her depth with my case, but I’ll play along. Need my synthroid. We can juggle this.
So I make the appointment and go get my labs drawn and we started playing the authorizing my dose for the “tide over” script I need until my appointment. Irritating, but what. Ever.
Meanwhile, I’m also refilling a couple of scripts from my pain doc because they don’t always line up to fill all of them on the same day, and my appointment isn’t until Tuesday with her. Got one. Requested another. No message back. Ugh. Send another message. Pharmacy calls me: we called, they said patient need to get a hold of them. What? Why? At 3:30 on Friday afternoon. Needless to say, no meds for Xunnie til next week.
In the middle of all of the fuckery, I also get another email from my PCM’s nurse. “Your liver function tests came back slightly abnormal, we need a repeat fasting labs as soon as possible.”
What the fuck does that mean??!!
I email him back: Can you send me my labs? and I’ll be in next week. Response? They’re online, you can look them up.
Fine. I spent an HOUR setting up my TOL profile to get into my lab results. Guess what? Say it with me…..not available yet.
(I kinda snapped. That was me hitting the wall.)
- still have to get a hold of my pain doc and find out why they won’t refill one of my migraine prevention meds.
- Have to find out what labs came back with what results and decide if I’m going to fight with them about it. (This is, after all, the same doc that decided I needed a colonoscopy and a fuckload of iron because I HAD MRSA & MY LEVELS WERE OFF BECAUSE I LOST 15 POUNDS. So, yeah, none of that happened.)
- contemplate repeating the labs at some point next week. But they’re 12+ hr fasting labs.
- pain doc appointment on Tuesday and monthly refills
I also have: kid’s photography class next week M-F 1-4 pm, the stupid physical they’re bullying me into on the 25th, my oldest’s birthday on the 25th, new asl classes starting on the 16th, neuro appointment on the 26th so I can ask her about surgery to remove the cyst in my left maxillary sinus so I can breathe and because I’d really like to prevent me getting MRSA again. AND at some point I need to get my shit together and get the kid’s curriculum set up for the coming school year.
All those ^ I can do. Because that’s life, and there’s lots of good stuff. But I kinda freaked out a little and got overwhelmed by juggling my pcm’s demands, whateverthefuck “slightly abnormal liver function lab results” means, trying to fill my scripts and jump through all their damn hoops and follow their damn rules, trying to get a hold of my pain docs, and juggling doctors, scripts and tests.
I don’t want to do this anymore. Life with chronic illness blows.
The last 47 days or so of my life has really felt like I fell down the rabbit hole. It never ceases to amaze me when when I see up close how quickly a life can change. Anytime a person is faced with a major life change, it’s easy to see who loves you through thick and thin, and who….well, doesn’t. We forget that it isn’t just death we grieve….
This Summer has ended up being a flurry of activities and classes for the kidlet, interspersed by doctor visits, scans, tests, and a lot of speculation. The day before yesterday was the day. The day it all became real. The day the neurosurgeons got a hold of my case and the day we were to learn what direction this was all heading. Was I shaving my head? (If I was, I’ve been growing my hair out for almost 4 years so I wanted the chance to donate it.) Am I having brain surgery? What the hell is going on??
Tuesday was a long day. We drove up to Georgetown University hospital (because in the midst of the insanity that makes up my every day, I always seem to be where I need to be when I need to be there…..but that’s another blog.) I met with the Head of Neurosurgery (to sum up the overwhelming opinion of that….”how the hell did you pull that off??!!”) because, apparently my case is a pretty interesting case. The doc took one look at my scans….
….and said ” I am NOT going in after that.” It’s a small tumor, but as I have learned in the past few days, it’s very deep in the brain and incredibly close to my brain stem. So Head-of-Neurosurgery asks his nurse to page Head-of-Radiology, Dr. Collins. Saving me another very long day for a consult, and because it was the end of the day, Dr. Collins decided to come over to Neuro to take a look.
My first thought was “oh, yay…he’s awkward like me. This is going to be okay.” I guess I can appreciate that doctors are scientists and spend the first 25 or 30 years of their lives in school, internship, residency, and immersed in learning, so a little social awkwardness is a good thing. At least to a fellow socially awkward lover of science like me.
Dr Collins concurred that this particular case is “interesting” (read: difficult and unusual) so he’s leaning towards what they kept referring to as radio-surgery. It looks like because of where the tumor is, how deep it is, and how close to the brain stem it is, that’s it’s basically an inoperable tumor. The good news is that it’s still small enough to be a candidate for radiation treatment, because apparently these tumors (well, any tumor) are not treatable by radiation if they get too much bigger than mine is.
So, right now I’m waiting for the Friday meeting they have in Georgetown where the doctors all get together and discuss cases. I guess it involves a lot of math because Dr. Collins said he needed to figure out probabilities of success and everyone seems to be really worried about any possibility of damage to surrounding nerves, tissues, and especially the brain stem. I didn’t realize how deep the tumor was or how close to the brain stem. Guess that’s not good.
(I’m being factitious….wordpress doesn’t have an irony font. Or a sarcasm font. Google….hey…..get on that!)
To sum up, the reality in my life right now is that it’s looking like radiation treatment is my best option, and if the docs hit the go button, then it becomes a matter of planning for the need to stay up in DC for a week and scheduling 5 treatments. The good news is there’s no shaving of the head and brain surgery, I live in a place where I have access to some of the best doctors and treatments available (I’m very grateful!!), and hopefully this will destroy the tumor and live moves on.
The other news is I’m pretty sure I’ll wind up in the medical journals. Again.