Tag Archives: life

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!

 

Hilarity Ensues

In the US we’re watching tensions built with North Korea and current administration. News out of Washington always seems like we just never know what’s really going on.

But today…..

There is a 30 foot inflatable chicken on the Ellipse near the White House. I’m only about an hour or so from this area and THIS is HILARIOUS! I dunno if you have a twitter or facebook, but if you do, do a quick search for “giant inflatable chicken” and enjoy the commentary!

Doesn’t matter which side of the aisle you’re on, this is FUNNY!

The Trojan Chicken!
“I don’t think Trump and North Korea should be playing chicken with nukes.”
You only elect the giant inflatable chicken once!
“Yesterday: Trump threatens North Korea with “fire and fury”, Today: We are LIVE covering the giant inflatable chicken on the South lawn of the WH.”
“Giant Inflatable Chicken 2020!”

Okay…..back to your day…..

 

Perspective

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:

20170807_205456

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)

9ed6e2107dfe468d1274c514a0e30430--the-dead-dads

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….

20170807_205535

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.

Ch-Cha-Changes…..

There are a lot of moving pieces in my life. Like…..MY life isn’t moving, but there is a lot! of movement around me and a lot of change. And I get it. Life is change and movement, whether that might be forward, or backward, or temporary movement.

Anywho…

My oldest
1. enrolled in the second part of her program, which means along with classes and papers, and reading, and.. and… and… (because it’s college), she’ll be starting her clinicals soon as well. She’s going through all this schooling to be a radiographer. I thought she was going for Xray tech, but this so much more. She kicking ass, so give her a thumbs up!
2. Her boyfriend of a year just dropped her without really any reason. Forget a good reason, it was shit and it was selfish and it broke her heart.
3. So on top of getting into the program, she quit her job to focus on school, and her boyfriend tells her “we’re not compatible”. W T F?!
4. And then her fish died today. She’s having a rough week.

radiographer-women-s-t-shirt

My boy…well, not “boy”; 6 foot tall, 200 lbs (23 year old) man, but my only son and therefore still my boy is still plugging along at his training to be an electrician and he finishes in November. And he seems to like Northern California, so that’s all good stuff for him too.

But we are having a major shift in the house. My youngest has decided to go to the local public high school and get out there and meet teenagers and go do the high school experience. Which is awesome, don’t get me wrong, but she’s been homeschool since she was 6. I brought her home in 2009. We were just moving way too much at that point with the Navy closing NAS Brunswick, so I thought the better choice was to homeschool her under an accredited school to protect us, allow us to reach what she wants to learn, when she wants to learn and how she would learn. But it’s been 8 years now and she wants to start getting out into the world.

So, between random bouts of tears and panic attacks, I am getting the paperwork together to get this process started.

It just feel like a million things I’m directing traffic to, offering up time and whatever my girls need.

So if you need me, I’ll be hiding out in my blanket fort. With my tablet, my coloring book (and crayons), and maybe some snacks.

f01bbbee186b351823cde35ae17cdffa--hiding-places-play-tents

The Leibster Award

I wanted to say Thank You SO much to Carly from My Hearing Loss Story for nominating me for this award. I started blogging in 2009 or 2010 (I think it was) as a way to figure out the changes life with chronic illness and chronic pain brought. That was post hip replacement/possible Fibro diagnosis/just diagnosed with Hashimoto’s. So in a short frame of time a lot of my life changed. I finished my degree program, started homeschooling my youngest, and moved just about once a year there for a while.

I have made some new friends and learned so much through my little blogging group and finding people that understand and share their own changes and frustrations. It’s nice to know we’re not alone!

liebster-award

The rules for the Liebster Award:

  1. Acknowledge the blog that nominated you and display the award
  2. Give 11 random facts about yourself
  3. Nominate 11 blogs
  4. Notify them of the nomination
  5. Give them 11 questions to answer

 

11 Random Facts About Xun

  1. I am an only child.
  2. I have three kids of my own.
  3. I used to be a dancer, which is probably why my doctors missed hip dysplasia and all the symptoms that are now leading to an EDS diagnosis.
  4. I am a writer and had some of my work published in a book of poetry in 1999.
  5. I have 13 tattoos and 7 piercings.
  6. I was the first woman in my family to go to college since my great-grandmother.
  7. I have lived in 8 states.
  8. Alice in Wonderland is my favorite story (which lead to Xun in Wonderland!)
  9. My first car was a little ’78 Datsun that my best friend nicknamed “Corky”.
  10. My family goes to the Renaissance Festival every year and I have a full set of garb.
  11. Xunae was created from my WoW character and she’s my alter-ego (and the better, badass version of me!).

My questions from Carly:

  1. Where do you live? Maryland, USA (about 40 miles from Washington, DC)
  2. What is the most delicious food you have ever eaten? Oh! I could go on and on about this! I got to grow up in Hawaii and the food there is amazing!! But my favorite thing and the first thing that comes to mind is Vanilla Bean Creme Brulee.
  3. What do you like to do in your free time? Read (I *love* my OwlCrate subscription box!!), game (I play Diablo 3), watch movies…
  4. Three things you can’t live without… The cheesy answer? My kids. The truest answer? my meds. But the best answer in the spirit of this: books, being able to go be by the water when I need to think, and music.
  5. What is your guiltiest pleasure? cheesy rom coms
  6. Describe yourself in three words. brave, strong, creative
  7. What single quality do you most appreciate in people? honesty
  8. Say something nice about yourself… When I love someone, I love them completely and I will protect them with my life.
  9. Why did you start blogging? to connect with people, to share information, to have an outlet
  10. Something that makes you laugh? my kids, my cats, witty humor
  11. Something you want to achieve or do in the next 5 years. Get off my arse and get my book written.

My nominees for the Liebster Award are:

  1. Kara from Polishing Dookie
  2. Laura from RibbonRX
  3. Pamela from Living in a Limited World
  4. Wendy from Picnic With Ants
  5. Laura from Bipolar for Life
  6. Brittany from Shits & Giggles
  7. Kate from Kate is Rising
  8. Lisa from Life of an El Paso Woman
  9. Sheldon 
  10. Kayla from Intrestinal Fortitude
  11. Migraines From Hell 

My questions for my nominees:

  1. If you opened your eyes tomorrow in a whole new existence, what is the first thing you would do?
  2. What would you eat if you could only have one thing for an entire year?
  3. What’s your zodiac sign? Do you think it suits you?
  4. What is your perfect day?
  5. Who is your favorite author?
  6. Where would you like to visit?
  7. What is your favorite quote?
  8. What is your middle name?
  9. Savory or sweet?
  10. What is your favorite animal?
  11. Who do you look up to?

 

To my nominees: please don’t feel like you have to complete this – I took a couple of weeks before I wrote this up and it takes a bit of time. If you have the time and want to write this up, then please do (I would love to see the answers!), but if you don’t want to share too much info or you just don’t have the time (or energy!), please don’t feel pressured to. I just wanted to share and to let some of the people I read and have met through here how awesome I think they are!

*gentle hugs* and Happy Blogging! (And THANK YOU so much!!) ~ Xun

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.

panic-attack-torn-pieces-paper-word-concept-image-close-up-46088471

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.

38029_1436743031126_1569088_n

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.

14100273_10208097750934088_3135696386006341473_n

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.

KONICA MINOLTA DIGITAL CAMERA

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!

102_0169

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.

1559

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.

image007

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.

tumor20171

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….

tumor22017

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….

demon1

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.