Tag Archives: brain tumor

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.

 

Happy….

Happy Mother’s Day to you Spoonies in America that have spawn.

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Or…..
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.

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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!

 

Journaling, Grief, Life….

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!)

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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.

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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.

The Last Time….

People always get stuck on the last thing….the last time…..the last words, when someone they care about dies. You can use all of the expressions; passed over, passing on, gone to Heaven, going home, shedding this mortal coil. But it all means the same thing. They have died. Their spirit moved on, the shell is left here. Ashes to ashes…

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What was I saying? oh, right! The last thing. We get stuck on the last thing. The last moment he/she/they were “just fine”.
“We were making _____ and then he was on the floor.” Seizure, heart attack, diabetic crisis, choking.
“I just saw him.” “I just talked to her.” The last words. The last thing, the last time you saw them.

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In the blink of an eye, they’re gone. Sometimes it’s quick and unforeseeable, accident, heart attack, suicide. Sometimes a long illness finally takes them. Even if it seems like they might survive, and then…..gone.

2016 took a hell of a lot of people. And some of the people that inspired this thought train that I’m pouring into my keyboard were included in that. But not all of them. Right now, there’s a big outpouring of grief and support for a 4-year old little boy that just died from cancer where I live. That makes 2 kids I’ve heard about in the last 6 months that cancer claimed. The other one was a 2 year old little girl.

I guess I’m just chewing on my own experience with losing people I care about. I think about the last thing I said, or the last time I saw them. For my Dad I told him how much I loved him, for Bren I messaged her “I love you”, my first step-dad I hadn’t talked to in over 2 years and I regretted that more than I can express in typed words, and an old friend died a couple of years ago and the last thing I said to him was in anger.

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The end, the unimaginable, the quiet closing of a chapter will happen. And I don’t want to make the same mistake of not saying the important stuff, or of saying something in anger again because I know how much the regret hurts.

I know the clock is ticking. I’m living with an inoperable brain tumor, and for the first time my husband wasn’t able to immediately wake me up for my morning thyroid meds (I guess I kind of freaked him out when he couldn’t wake me up, but clearly I have woken up and I’m not quite dead yet)….but it was a wake up call. So to speak.

Don’t wait. Say I love you, tell them they matter, you just never know when it could be the last thing.

 

 

The Opioid War; My Story

It’s not hard to find an article about the “Great American War on Pain (Meds)”, whether it’s a personal account or news about what our lawmakers are(n’t) doing for us….I mean protecting us from. Screw that brain tumor and spinal degeneration, chick, we WILL SAVE YOU FROM DAH DRUGS!!!!! ( whether you need it or not).

I never asked to be in this club, and I’m pretty sure there’s gotta be others out there that feel the same way, but I can only speak for myself, so other than the linked articles, these words are mine. This has been MY experience. The good, the bad, the really bad, the ugly, and the humiliating.

My personal journey with chronic pain started back in the 90’s with a misdiagnosed congenital leg length discrepancy. (I have congenital hip dysplasia….by itself not surprisingly unusual. But my case….the defect was missed my entire childhood, and then only begun to be discovered via a really ridiculous diagnonsense of “my left leg being 1.5 cm shorter than my right leg. Specifically, my left femur.”)

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Fast forward about 15 years,  throw a correct diagnosis of Congenital Hip Dysplasia in there (which by now has begun to affect my spine), a total hip replacement surgery, 4 months of rehab and PT, and a good dose of double pneumonia. (Side note: I also had nerve damage in my left arm) and you have somebody rolling into 2008-2009, discovering she has some serious pain.

So once I rolled all the O2 tanks out of my house because they were no longer needed, and tried to get on with my life, I found that I still hurt. A lot. All over.

I got told I was crazy, I got told I needed to see a therapist, I even had “potential drug seeking behavior, potential addiction? Anxiety disorder, h/x of eating disorder. Counseling suggested.” put in my chart.

“You just need some gentle exercise.”

“You just need to find a hobby.”

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I have put myself through:
physical therapy
talking therapy
Reiki
Accu-puncture
Accu-pressure
TriggerPoint Injections (still do. Sometimes they actually do help)
Nerve conduction studies in both arms, twice
massages twice a month (GOD I miss Susan, my massage therapist)
Yoga classes
Deep Breathing exercises
Biofeedback
Cervical Steroid Injections
& Radio-frequency Ablation for C6-C7 (twice)

All before they would consider any kind of drug therapy.

Then I had to run the gamete on all the different SSRI’s, SSNRI’s, and SNRI’s . I failed every 2 week trial. Sick as hell and exhausted, I would crawl back into my doctor’s office and plead with him to change my medication. Every time I had symptoms of Serotonin Syndrome. But I didn’t know it then. (I DO NOT do well on any kind of SSNRanything.)

Then it was Lyrica (pregabalin). Not bad, it worked (sorta), but I gained 30 pounds and my cholesterol shot up to 260 total. So I tapered off that and we tried Neurontin (Gabapentin). Which wasn’t bad, but the higher the dose went, the closer I had to be to my toilet until I finally cried “uncle!!” and told my doc I was afraid to leave the damn house!

This brings us up to 2010, when I moved to Merryland. I landed in the clinic of my new primary care with all of these records and she:
1) Immediately put me in for EFM (Exceptional Family Member status for the families of active duty.) (side note: I got EFM5, if you know what that means you get it. But Chief is retired now, so it doesn’t really matter anymore.)
2) Filled out all my paperwork to get me a disabled placard. She was incensed that no-one else had handled that based on my hip replacement alone.
3) Filled out the paperwork that would allow me to ask for my student loans to be discharged since I now was “officially disabled” and could not work.
4) Referred me to an actual pain management clinic for the first time.

In 2011, I was under some form of anesthesia 13 times for procedures. One for a cystoscopy, the other 12 for various shots into my C-spine. So, anyone can see that I was willing to put myself through just about anything to try to feel better.

Late 2010, early 2011 is when I was finally allowed to have long term pain medication prescribed to me.

Now, I have 6 monthly prescriptions from my pain clinic and neurologist. Three of those I physically have to go pick up the prescription and take it to the pharmacy. Everything is tracked and followed. My doctors and my pharmacists work with me and everybody reports everything to everyone else AND the insurance company.I follow all their rules, jump through all their hoops, never miss or reschedule an appointment with my pain clinic, and I submit to urine tests when mandated.

I follow all their embarrassing, humiliating, difficult rules and jump through the hoops because the pain meds I get allow me to function most of the time. They allow me to run my house and homeschool my child.

That’s all I want to do is live my life, so I play their games.

THIS is the face of a chronic pain patient:

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Trigeminal Meningioma, left side diagnosed 06/2014 ; Congenital Hip Dysplasia corrected with a Birmingham total hip replacement 11/2007 ; Migraines, Trigeminal Neuropathy, Fibromyalgia, and nerve damage present in both arms.

I am not an addict. I am not a junkie. I’m a mother, a sister, a wife, a best friend, a daughter. And I just want to try to live the life I have left. And I need my meds to try to do that.

Surviving the Damn Year

So, this being the second day of 2017 means we made it. We survived the frickin dumpster fire of 2016…

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I’m still a bit skeptical. We do have to survive inaugurating Donald Trump in 19 days, and it really doesn’t matter what side of the fence you’re on when it come to the historic choice of electing someone to run America with NO leadership experience or previous posts in any elected position, we don’t know what he’s going to do.

Nevertheless, I am hopeful that 2017 is going to be less agonizing than 2016. We still have to clean up the mess from 2016, but one can hope we have no where to go but up, right?

As for The Xunnie Show, I have survived the last round of tests (A modified barium swallow test is weird!!)

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…and gotten half of the results.

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I haven’t heard from my neurologist. Which either means she took a holiday for the rest of the season and should be back shortly, or she’s waiting until my appointment in 4 weeks to follow up. It says “Mild Dysphagia” which means the tumor is starting to creep into other ways of making my life interesting. But I am still coughing, and I still occasionally have a productive cough. So I’m think I get the best of both. Progression of tumor symptoms, and a reason to go back to the pulmonologist and see if I can finally get that broncoscopy.

So that’s where I am health-wise. Tumor is still hanging around. Apparently (s)he feels neglected? I dunno. More news to come when it’s available.
Upcoming: trip to pcm for EDS diagnosis
trip to neuro for swallow follow up
back to pulmonology to see what’s up with my lungs
follow up with pain management (to keep them in the loop) in February

In life-and-holiday news

I got to go to The Kennedy Center and see Wicked with my youngest. AWE-some.

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The kid got her most-wanted Xmas gift: A Newt Scamander coat

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…and I got an awesome hoodie from my Mom.

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Hooray for cancer/tumor support and research!!

And the fur babies got a new scratchy-scratchy! They love sitting on their new couch!

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So, that was pretty much my December. Juggling doctors, chasing tests and scripts, and holiday shtuff!

I hope you survived 2016 mostly intact….and 2017, here we go!!

 

Ping Pong

Is “Life as a ping pong ball” too long of a title for the blog entry? Yeah, I kinda thought so, which is why it’s just “Ping Pong”.

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A couple of weeks ago I updated with having seen the pulmonologist who bounced me back to my neurologist, thinking the cough, choking, etc could be related to the brain tumor which happens to be hanging out on/near the left 5th cranial nerve which likes to control swallowing. So, in short, pulmonologist-doc thinks it could be neurological.

I bounced back to neurologist with this info, and after a bunch of insurance and referral bullsh…..stuff, I finally got the swallow test scheduled. Because how much fun does being put under a fluoroscope and given barium to swallow sound like?! I know…..I know…..calm down. You all can’t have allllll my fun.

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Anywho, next week (the 15th) I have the modified barium swallow test scheduled. Which, I think means they’ll try to see if they can make me choke? or something? And neurologist-doc says “I hope it’s not neurological” and if I pass? fail? prove that it’s not neuro, then I get bounced back to pulmonology.

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It’s just been a hell of a year, hasn’t it?

2016 has been rough. For a lot of reasons, and for a lot of people. Tis the season to remind everyone that they matter, and send goodwill and cheer and all that. Please don’t think that I don’t. I’m just kind of stuck myself. By February, I began to wonder if I was going to live through the year. So many losses, so much hurt and heartache this year.

And sometimes I just get so tired of trying and fighting and this insane purgatory of  too-much-of-this-and-not-enough-of-that. I have a brain tumor, but it’s not terminal. I’m sick, but not critical. I’m well enough that I’m expected to do most of what I did before I got sick, but I’m afforded time if I need it. I’m exhausted, but still functional. Too much of this, not enough of that. And I live in a world of a constantly changing pain scale.

In pain, but most of the time I manage.
Sick, but (usually) well enough to function.
Disabled, but (usually) capable. Sick, but not infirm. Pain, but only so much.

Life as a ping pong ball. So, yeah, occasionally I hit a wall.

My body, my mind, my heart hurt so much sometimes I can barely breathe. So I remind myself to.

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Gaelic for “breathe”, on my left forearm

In a world full of hard surfaces and sharp edges, sometimes I wonder why I fight so hard through the pain. When it all feels too big, and too hard, and it hurts too much…I keep fighting.

I’m hurting, but I’m trying. I’m a ping pong ball.

Stupid Tumor

The general consensus is 2016 can go fuck itself. And I have to say I’m inclined to get on that bandwagon.

I have had a thing pretty much all year that we (me, my family, and my herd of doctors) have been trying to decide if it’s a thing or not. The prevailing opinion as of right now is…..yes, it might be a thing. But not, like….an easy thing. Mostly it’ll probably be a thing that ends with me, Xun, dying in a stupid way.

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I choked way back in February. On chocolate milk, of all things (if you’ve been following The Cris Show for more than a minute you already know all this). February 16, chocolate milk, fairly late in the evening, hubs was out of town, my oldest was there. Fun stuff. I figured I hemorrhaged a vocal chord because I choked pretty….good? well? hard? severely? I choked a lot. And for several minutes.

My voice was gone. MIA for 2+ weeks. And I spiked a fever of 101 two days later. So I saw my pcm who checked me out and got a throat culture. Then I saw my neurologist the following week. She noted it in my chart and confirmed that the fever indicated that I had aspirated the frickin chocolate milk and my body responded.

February rolled on into March and I was still sick as hell. Like losing 15 pounds sick.  For some bizarre reason the lab lost? or ate? or…..didn’t bother following up on my throat culture? But I finally got a phone call on March 14 ( yes, a MONTH later) saying my throat culture came back and I had MRSA.

Seriously?! MRSA?! (Side note, it’s fun to see the doctors react to me saying I have/had MRSA.) Oh, goodie. I’m allergic to 3 families of antibiotics. Let’s do this.

Two rounds of antibiotics later, I retested and came back clean. Finally. This is 3rd week of April-ish.

But the cough never really went away. I have had this random cough with an even more random productive cough since February. Allergy meds. Inhaler. “Just wait it out.”
Noted in my chart in August for a yearly physical. Yep, still there. Allergies? “But are you dead yet?” (Okay, no, she didn’t really ask me that.)

The year drags on. The stupid coughing and random losing my voice and another choking incident.

Back to the pcm in October. Because I’m still coughing. Stupid lungs. Stupid body. Stupid brain tumor.
I’ve seen my pcm, my neurologist, an ENT surgeon, a pulmonologist who sent me back to my neurologist…..and that’s where we are.

Pcm says see pulmonologist. Pulmonologist says it’s neurological and likely related the the asshole tumor sitting on my left 5th cranial nerve. Back to neurologist this morning and the next step is a modified swallow study.

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Oh fun.

Stupid tumor. Choking on chocolate milk is a stupid way to die.

Monkeys; Updated

So I sent out an update at the beginning of the week because against my will I have been plagued with some extra tests and referrals, and after a bit of a crazy week (and I’m kind of a zombie today), I have updates!

…and purple hair. Much purpler than last time. My hair is almost to my waist, so I used 2 boxes and there was purple dye everywhere!!

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Back to the updates…

PCM:
Right Upper Quadrant Ultrasound: Normal (HA!! take that Liver!)
Thyroid Ultrasound: Findings compatible w/history of Hashimoto’s Thyroiditis
All blood labs drawn and completed, Iron panel recheck in November
Cobalt & Chromium levels pending
yearly physical completed and okay, PAP results returned normal, PAP recommended in 5 years, August 2021, unless otherwise indicated.

Neuro:
EEG completed 8/29
Follow up 10/04 for EEG results and for migraine and TN pain following (f*k you tumor)

Pain Clinic:
referrals renewed for the rest of the year, new referral due on or around March 5, 2017
scripts current until follow up with PA on 10/04

ENT:
saw ENT surgeon 09/12
CT paranasal sinuses completed 9/14 (that was weird, face down. Did you know the whole CT machine can tilt 45 degrees??)
small mucosal retention cyst in left maxillary sinus, nasal septum deviated to the left
follow up 9/22
(did I say my left side has it out for me?!)

Also, stupid left baby toe is pretty colors and I’m fairly certain I fractured it, but meh….whatta ya gonna do?

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Finally, I ordered a myintent  necklace because last week during the Stand Up 2 Cancer telecast, they were participating and offering 10% off and all proceeds going to SU2C. Because Stand Up 2 Cancer. Retired-Chief and I have both lost our Dads to Cancer, my best friend beat stage 3 colon cancer 12 years ago, and I’m living with an inoperable brain tumor. So, it’s a cause close to my heart.

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I choose “I rise” because I try to rise above the pain and fear. And because I’m in love with this song….

 

 

Juggling Monkeys

I used to use that phrase “juggling monkeys” to literally mean my three monkeys (okay 2 of them were roughly my size and are now bigger than me), my house, the aminals, and life in general while Chief was off saving the world.

These days it means more like all the ish that comes with being stuck in this body (seriously, WHO do I speak to about a refund??), homeschooling the youngest monkey, 3 cats, and life in general while Retired-Chief is off building computers to save the world.

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If you ever wanted to know what I’m sitting in front of when I post this… Xunnie’s desktop

Most of the time, everything is fairly juggle-able. (Is that a word? it is now.)

But, throw in a brain tumor that likes to show up via choking incidents and memory impairment, a couple more specialists, some script changes, …oh! and the recent inability to not frickin drop absolutely everything and anything I touch.

So….broken down:

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PCM (Primary care doc):
Right Upper Quadrant Ultrasound (ordered due to wonky labs): ordered, completed, results received. Normal Abdominal Ultrasound  (although she is still threatening to send me to GI)
Thyroid Ultrasoundordered, appointment 9/13 @ 2 pm
Metabolic lab panel, Liver Function panel, Cobalt blood levels, Chromium blood levels: labs ordered and completed, except for Cobalt & Chromium results still pending
Yearly PAP results are also still pending (but if I pass my pap I may get to go a few extra years without one! Cross your fingers!)
Edit: Update….PAP results are back and normal! Hooray! ~ X

Neurologist:
Raised my dose of blood pressure/tremor/anti-seizure med
EEG: ordered, completed, results pending, next appt 10/04
(I’m also supposed to be keeping a pain/headache log)

ENT Surgeon:
new doc, saw her today
Reviewed the last 2 brain MRIs I have that show a retention cyst in my left maxillary sinus
Ordered a CT of my paranasal sinuses, appointment 9/14 @ 1pm
Follow up with her 9/22 @ 3 pm. She says if the cyst is pressing on the boney structures, we schedule surgery. But it’s endoscopic outpatient surgery. Ain’t no thang.

Pain doc:
I am very, VERY lucky that I have a pain clinic that listens to me and treats me. I put up with a certain amount of crap, but Amy (the PA I see every 6-8 weeks) is very kind and happy to work with the rest of my doctors. They keep my brain tumor scans and reports, and my migraine info on file, and order cervical MRIs every 1-2 years. Amy actually suggested my newest EEG from my neurologist.
Referral renewed for the rest of the year: check.
Scripts renewed until next month: check.

This is me fighting for fewer doctors and juggling tests and scripts. It’s a little crazy right now, but it’s been a rough year. (F*k you MRSA)

I also dyed my hair purple again, inspired by Kara.

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There’s purple dye everywhere!!!

AND dropped the damn jar of skin cream on my baby toe. And of course it’s the one with the screw in it. On my left foot. Because of course it is.
(random Xunnie fact: My left side and Tuesdays have it out for me)

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Also, can I just point out that dropping the jar on my foot right there takes talent!