Category Archives: updates

Hip Hip Hooray!

So in spite of my best efforts to ignore anything that even remotely resembles a birthday, my mom called me today to remind me I have a birthday tomorrow. We disagreed about exactly which birthday it is. Suffice to say we’re (read: I’m) going with I’m 36.95 plus shipping & handling.

BUT one thing we can agree about is 10 years ago today I had my hip surgery! A cutting edge, new, all-metal hip replacement designed to last the rest of my life. At the time of my surgery, it had only been FDA approved for about 14 months, and from what I can tell, it is not done much, if at all, anymore. And I was unbelievably lucky enough to have the #2 U.S. surgeon, who had, in fact, traveled to Birmingham, England to train on the surgical technique!

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So today I celebrate that I have a hip I can still walk on, and I am grateful every day for that ability!

Whether or not my brain tumor is related to said hip implant remains to be seen, and they just drew Cobalt and Chromium levels last Thursday, so I will keep you up to date when I get the results. I already know my chromium levels are high, but they’re normal-people high, not implant-patient high. Or at least they were 2 years ago.

Whatever. Ya’ll ain’t getting my implant back. I am not open to a revision surgery. It’s really damn hard to learn to walk again in your 30’s.

Side note: also, 15 years ago I was within 12 days of delivering my youngest child, my Rainbow Baby, my miracle I went through Hell and high-water to have.

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And the last thing to share this week is that I got to do a bucket-list, incredibly cool thing last Friday night. We went to the Kennedy Center and got to see FLUFFY!!! (Gabriel Iglesias!) (& if you know who that is, you know how funny he is!)
I don’t think I have ever laughed as hard as I did at his show. I had tears rolling down my face, bright red (thank goodness for awesome water-proof mascara). It was one of the best things I’ve gotten to see!

We had awesome seats, second row, stage right.

So, Happy Birthday Hip. I got to see Fluffy. And cobalt & chromium levels coming this week!

 

*gentle hugs* ~ ❤ Xunnie

7 Photos, 7 Days; Day 7!

Merry Samhain! Happy Halloween! And a good boo! to you all!

Today is my last day of my Photos From My Life series. Did you guys like anything in particular? I always think it’s interesting to see photos from someone else’s life. Where are they? What do they tend to take pictures of?

Some people take pictures of places, or things, moments, or other people so they can hide behind the lens instead of being in front of it. Some take pictures of places and people they love to remember.

As I was looking through my social media today, I counted how many of the past years I have thrown on scrubs and dressed up on Halloween as my alter ego: Meredith Grey. Since I created my personal Facebook page in 2008, I have dressed in scrubs 6 out of the last 9 years, with 2 other years as Alice (one was Evil Alice, inspired by Warehouse 13), and one year I was Sarah Sanderson. (and if you don’t know who that is, get your booootay over to Amazon and order Hocus Pocus stat!!)

This year I am dressing up as an Arkham inspired Steampunk Harley Quinn. (I’ll post pix tomorrow! The girl child is doing my make up!)

So, onward to the final Black & White Photo for my series!

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Merry Samhain! ❤ ~ Xun

The Next Thing

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.

EXCEPT~~~~~~~~~~~~

My youngest daughter starts high school tomorrow and I haven’t quite figured out if and/or how much Imma freak OUT.

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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

Labs and Crap

Time for my “yearly physical”…..bwahahahaha. Yeah, I know. As someone that sees a doctor no less than every 8 weeks, it cracks me up when I have to go see my primary care traffic director every year. She likes to pretend she does more than bitch about my labs and direct referrals, but we know better.

She’s young and in her defense she’s only had me for a patient for about a year and a half and I’m a pain in the ass. It’s not her fault that she’s in over her head…she wasn’t even in med school when I had my hip replacement.

I went over to the lab like a good girl and had them pull my fasting labs last Monday morning so that she had everything before I see her Tuesday afternoon. They pulled 7 vials out of me!! Pretty sure I should have had a cookie before I drove home, but the good news is I am a super easy stick. No rolling veins or tough spots to try to find. And everything went smoothly, so I’m hoping I was the easiest patient that lab tech had all day.

So of course I had to log into the patient portal and get my labs so I can analyze them before I even see her.

My TSH and T4 levels look like they might have to raise my Synthroid dose. But they’ve been creeping it up for over 10 years. I’m not surprised. It is autoimmune thyroid.

My metabolic panel looks pretty good. Hemoglobin and hematocrit are just barely low, but they’re good for me. Vitamin D and B12 are really good! Yay me for taking my vitamins!

The biggest thing I noticed was my GGT is still high but nothing like it was last year. (I did have MRSA then!) And it’s trending down.

And I got a hold of my Cobalt and Chromium levels from last September and of course they’re high, but they’re normal people high, not MoM implant high. And honestly I don’t care. I’m not open to revision surgery. November is my 10th anniversary of my hip surgery, so the way I see it I’m doing pretty damn good.

More updates after my appointment this week!

 

Changes & the Noise in My Head

First an anecdote from yesterday: It was close to 100* F yesterday and my house is dual zoned climate controlled (I promise this is relevant). I keep it about 74F during the summer. (I try to save energy and all, but I already turn blue for no reason and we have like 20 solar panels on the roof.) I was down stairs for several hours and went upstairs to get the laundry and change clothes. As soon as I got to the top of the stairs, I noticed it was much warmer and felt kind of stuffy and humid. (Humid?? When you live on the Chesapeake?? Get out!! Okay, I’ll shut up and get on with the story…..)

I wandered into my room to check the Nest thing and it said that it was about 78F upstairs and had not been running. My first thought? “I wonder if the house thinks I’m not home because I had been hanging out in pretty much one spot downstairs.”

What? “My house thinks I’m not home??!!” Who thinks that?? Oh, right. Me. Because hubs built this house and wired it with all the goodies he wanted.

But still … WhoTF thinks “my house must think…..”??

Anywho…..

  1. I got nominated for an award!! So I better get off my butt and work on that. And thank you, I am truly honored. I started this to write my way through the pain and uncertainty of chronic pain and illness and found friends and support and awesome stuff along the way!
  2. My youngest has decided after being homeschooled for 8 years (she did K, 1st, and 30 days of second grade in public school and I brought her home in 2009 at 6 years old y’all!) that she would like to transition to public school and get out in the world. So in between panic attacks I am trying to gather information for what I’ll need to register her, and working on transcripts.

Fortunately, she has been technically registered in a private school, to protect us and her from any local school districts and allow me the freedom to teach her what we want, how she wants, and keep transcripts, grades, and attendance records. So to the school it will be a lot like a student transferring in from out of state.

I have a list of requirements, I’ve let the head of our current school know, and I am gathering all the needed paperwork.

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So now that much is done, and it’s Friday afternoon, I’m going to allow my anxiety (and occasional panic attacks) about it all to hit pause and go play the new season of Diablo 3.

(Also my oldest just got accepted to her chosen program for imaging tech and she’s super-psyched and focused and I am insanely proud of her. She’s focused and determined and working on a great program that is for HER , so please give the guy that just broke up with her  a one fingered salute!)

Like I said…..changes.

In The Quiet

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.

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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.

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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.

5 Years Ago

My oldest used to get really frustrated with me because I wouldn’t tell her much about my childhood or who I was before I was “Mom”. It’s not her fault. I had kind of a tough childhood, and somethings I shut out, others I chose to try to forget….you get the idea.

My biological father bailed when I was 6. But I did have 2 other guys that sort of stuck around longer and were Dad-like. The first was my first step-dad and he was around until I was in high school. Not a bad guy, but he had his own demons; and, as my mom would say, when he dropped the ball, Ron (my Dad) picked it up.

Ron was my kids’ Grandpa, he was in my life longer than anybody else dadlike, and he was my *Dad*. He taught me to drive a stick, he was the only Grandpa my kids knew, and he was the guy that filled the space that my father vacated.

I learned so much from him. Not just how to drive a manual transmission, or wrap a Christmas present. I learned everything that got me through 5 days in Georgetown going through radiation. Finding peace. Being still. Being quiet. Breathe. Center.

He died 5 years ago today, and not a day goes by that he’s still not with me in some way.

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So, today’s memory is the time I cut my foot and he picked me up and carried me into the ocean. That was the day that I learned Hawaiian ocean water can cure just about anything! I still drive to the water when I need some calm, some peace, some clarity. But it’s the Chesapeake Bay these days.

1997? I think it was…I cut my foot, not bad, but I was being a baby about it and Ron swore I just needed to get out in the water. Me: “No,no, no! Salt water is just going to sting!!” So he picks me up and carries me out in the water until he’s at least waist deep and I’m screaming and laughing. Lo and behold, the next day my foot was at least 50% better. He was right!

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I miss you Grandpa (dad, Ron, Kumu). I can’t believe it’s been 5 years! But I know you’re still with me, and my mom, and my kiddums! ❤

Ron L Obrey 7/6/1951- 6/23/2012

If I Could Close My Eyes….

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.

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The point of all of this is:

  1. I did, in fact, get this year’s results and the tumor is “stable with no change in size”.
  2. 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.

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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?

Do You Know What YOUR Brain Looks Like?

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.

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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….

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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….

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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.

 

Awesome Bloggers (and …)

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So Kara from Polishing Dookie, who is an awesome and inspiring chick that blows me away with her compassion and ability to laugh through the pain, nominated me for an award.

This award was created by Maggie – Dreaming of Guatemala. She created the award “For the absolutely wonderful writers all across the blogging world. They have beautiful blogs, are kind and lovely, and always find a way to add happiness and laughter to the lives of their readers. That is what truly defines an awesome blogger.”

Rules of engagement:

  • Thank the person who nominated you.
  • Include the reason behind the award.
  • Include the banner in your post.
  • Tag it under #awesomebloggeraward in the Reader.
  • Answer the questions your nominator gave you.
  • Nominate at least 5 awesome bloggers.
  • Give your nominees 10 new questions to answer.
  • Let your nominees know they’ve been nominated!

 

Thank you Kara! I know you’re up to your eyeballs right now, but you still find a way to keep us all up to date and stay in touch. I am grateful to know you and be inspired by you all the time!

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Kara’s Questions for her Nominees:

If you found out you had 24 hours to live, what would you do with your remaining time?

Skydiving?
No, seriously I know the expected and correct answer is spend as much time with my loved ones as possible. And I would, my mom, my husband, my kids, my best friends. And I would write down as much as I could for my kids to have to look back on as they go through their own lives.

Do you have any irrational fears? If yes, please explain.

I have an irrational fear of bats. No I don’t know why. No, I don’t want to hear all about all the cool stuff they do.

What is your favorite song?

Ahahahahahahaha….(wheeze…..cough……inhale)….hahahahaha. Have you met me? Pick a genre, an artist, a decade….I gotta have something to narrow it down first.
That being said, let’s see: The Shadow of Venus by Apocalyptica is my ringtone right now, I have 391 (give or take a few) songs on my phone, and the last 5 played were:
Bad Romance by Halestorm
Pony by Ginuwine
Quiet by Milck
Royals by Otep
It’s Quiet Uptown by Kelly Clarkson

and I have Sister Christian by Night Ranger stuck in my head right now.

Have you ever done the truffle shuffle?

Hell yeah. And I own the movie. And I have 2 Goonies shirts!
Goonie Never say Die!

Describe yourself in four words or less (?)

chick, geek, mom

If you were a comic book character, would you be a hero or a villain?

I’d love to say hero, but we all know I make a fabulous villain. But like Maleficent or Harley Quinn villain.

What would your special power be?

Reading minds? Or maybe teleporting?
(Who am I kidding, I just want to get my eyeliner wing right!)

Do you have any habits that drive other people bonkers?

I’m sure I do. I’m a grammar nazi, and can be a perfectionist, and if I argue I make sure you know I’m right.
(I might share a little too much sometimes too.)

Does “normal” exist?

What is this “normal” you speak of?

Chips or cookies (or both at the same time)?

Usually chips, but I do have a recipe for Potato Chip Cookies with butterscotch chips.

Xunnie’s Questions:
Stephen King says if you don’t have time to read, you don’t have time to write. Do you think that’s true, and why or why not?

What would your readers be surprised to learn about you?

Which book world would you like to visit?

Do you have any pet peeves?

Book or Movie? Why?

What is your biggest phobia?

What are you proud of yourself for?

What is your favorite joke or pun?

Lions or Tigers or Bears?

What made you decide to share your story and start your blog?

Xunnie’s Noms:
Kara (Can I nominate her back? If for no other reason than for her to answer the questions?)
Laura

Brittany

Pamela (even though she’s taking a much needed break, I have learned so much from her!)

Rachel

Kate

Meagan from My Acoustic Neuroma Journey

J from Eye Will Not Cry

Migraines from Hell

Lisa at Life of an El Paso Woman

“Anna” at Anonymously Autistic

Sherrie from I Sign. I Wonder.

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I meant to write one post today but after it ended up being almost 1300 words, I split it.

Part two, coming up….