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.

#safetypin

Just a quick post today, because I’m seeing a lot of emotion and fear floating around social media and the blogosphere today. Well……this week actually. And probably for some time to come.

America is reacting right now. The world is watching, and reacting too. Some good reactions, some bad reactions, and a lot of fear because we don’t yet know what’s to come. And with the way 2016 has been, it could really be frickin anything.

(For example, my pulmonologist telling me my brain tumor probably is going to kill me, but more like affect my ability to swallow so I’ll die by chocolate milk. But that’s another story, and I’ll post that blog soon.)

At any rate, back to my quick post.

I have raised my kids to believe that everyone matters. Their whole lives I have told them I don’t care who they choose to be, or be with. Because love is hard enough to find in this world.  Be kind, love one another, include others in your life. My kids don’t judge color, shape, size, religion, sexual preference, gender, or age. Love is love.

Don’t forget that.

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Daughter, Wife, Mother, Friend

Today is Veteran’s day in the U.S. Today is the day we recognize the less than 2% of Americans that hold up their hand, swear in, and say “I will”.

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I have grown up around the military, and I am: the daughter of a Vietnam Army Vet (2 tours),the daughter-in-law of an Army Vet (26+ years), the ex-wife of an Army Vet (5+ years), the wife of a Navy Vet (24 years), the mother of a Navy Vet (1 tour), and the proud friend and supporter of those who have served….some for a career, some for a tour.

All of them are amazing and brave people that I am grateful to have shared a little of my life with.

My biological father is gone now. Passed away 02/15/2015. ( Little bit of Xunnie trivia and some irony: my husband and my father both share(d) a birthday; 12/03!) I make the distinction because the guy who I call “Dad” and the guy who shares my genes are not the same guy. But they have both since passed away. My Dad in 2012, buried in Hawaii. My Father in 2015, buried in Oregon.

Life is messy. It is what it is.

But in my search to find out why I have a rare birth defect and now a brain tumor, I got a hold of my father’s service records.

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He was drafted into Vietnam and did two tours. I don’t have much from him, and I haven’t had his name since I was 18, but I am honored to see he served honorably. I don’t have the details (they tend to keep those locked up, and I’m fairly certain his service records might have been at least partially lost in a fire in the 70’s), but he received a Bronze Star!

The Bronze Star Medal, unofficially the Bronze Star, is a United States decoration awarded to members of the United States Armed Forces for either heroic achievement, heroic service, meritorious achievement, or meritorious service in a combat zone.
The Bronze Star Medal is the fourth-highest individual military award and the ninth-highest by order of precedence in the US Military.

My husband retired in 2013, with 24 years of service.

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My son joined the Navy, did a tour, served his country, and now lives in California. He’s using his GI Bill benefits and going to school as he moves on to the next chapter of his life.

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My father, my father-in-law, my ex-husband, my husband, my son, my friends, and now their kids have all held up their hand and swore to serve.

“I, _____, do solemnly swear (or affirm) that I will support and defend the Constitution of the United States against all enemies, foreign and domestic; that I will bear true faith and allegiance to the same; and that I will obey the orders of the President of the United States and the orders of the officers appointed over me, according to regulations and the Uniform Code of Military Justice. So help me God.”

They ran towards the fear and the fight. And I am honored to know them and love them, humbled by their service, and eternally grateful.

This SIM Game Sucks

I keep telling myself that we *have* to be living in some sort of SIM game, or Matrix, or….some sort of altered, controlled reality. Any body used to play the SIMS besides me? Didn’t you create some sort of world or situation just to see what would happen? Ever “woohoo” your sim to death?

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Ever seen The Matrix? The Adjustment Bureau?
I think it’s inherent in some people….they just want to watch the world burn.

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I live in America, and Heaven help us. There is a lot to say as we woke up this morning….

But I think we got it wrong…..

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The website for immigrating to Canada crashed last night. Or maybe we should call England and France and tell them to come get their land and their stuff back. Beg the Queen to take us back because America is acting like a teenage county and demonstrating that we are clearly not ready to pay our own bills and do grown up stuff?

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If you want me I will be hiding in my blanket fort with my headphones and my coloring books.

It’s Quiet Uptown

I’ve had so much stuff rattling around through my head. It always resets me when I see that I haven’t actually posted in a minute because I am always writing, but I guess it takes me a bit to write through my journals for enough time and words to come together for me to make the hop into publishing it. But…okay, here we go!

It’s just been such a weird year. I was scrolling through twitter and saw a re-tweet I sent a few months ago : I hope 2016 doesn’t get renewed. The plot is ridiculous and none of the characters are likable.

Seriously.

Between my own personal journey around the 4th gate of Hell this year, and losing so many people, this insane election season, and now we careen toward the end of 2016. Anybody wanna come hang out in my blanket fort and color til the crazy moves on? Can it? Would it? Where would it go? Can we get together and vote it off the island?

The good: The Cubbies won the series!!!! Holy ssshhhhhhhhiiiiiitttt! I am personally not a fan. Of baseball or the Cubs, but my Bren was a YUGE fan I just know she was up in Heaven dancing her ass off the other day! I spent half the day after the Cubs won talking to her. Just wondering around my house getting stuff and telling her I knew she was so excited. And how weird it was that they won, they *finally* won 9 1/2 months after she passed. She died and they won in the same year. Idunnoknow. I just miss her. And her Cubs won!

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Bren; source

Bittersweet. I have so much joy knowing her team won, and all I can do is close my eyes and know she is up there dancing and celebrating!

On a different, but related, note. I saw today that one of my friends I play games with online lost her granddaughter. My heart is absolutely hurting for her and her family now. I watched through FB posts as she shared the unbridled joy of becoming a Grandma less than 2 years ago, and the fear & struggle as baby girl was diagnosed with neuroblastoma at just over a year old last December. And today I open my FB feed to see her post that babygirl had passed late Thursday night/2 am Friday morning.

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Don’t wait. Tell your loved ones you love them. Don’t let your last word be in anger. Don’t wait. Life happens in real time…..one of my favorite sayings and it reminds me there isn’t always tomorrow or next time.

So send out some positive energy, or a prayer, tell someone you love them, hold on to the good stuff. It all happens in the blink of an eye.

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Quick update on me:

It’s becoming more likely that I have Ehlers-Danlos syndrome. Two of my doctors have brought it up, with my pain doc advocating for me to go back to my PCM for the testing.

I have a referral to a pulmonologist this week. I choked waaaaayy back in February, had MRSA in March & April, and I still have a random cough, with an even more random productive cough. My chest xray was mostly clear, but my PCM and the ER both suggested a broncoscopy, so it’s off to see the guy in charge of throat-lung scopy things.

Meds are mostly stable, but frustrating. I am so over this damn “drug war”.

Minimal T-spine and C-spine degeneration and slight curvature. Scoliosis and Pectus Excavatum noted in my chart.

I’m blowing off my GI referral. Still don’t think I need it. Off to pulmonology instead. At least that one makes sense right?

At any rate, I think that sums up most of where I’m at right now. Think I may start an extra tab with my diag-nonsenses.

Hugs & an extra hour tomorrow! XoXo ~ Xun

In the Matrix

Ho-LY ……well, shite I guess. Has it really been a month since I posted?!

Okay, well, lemme think. Where to start? Hair is still purple. Ish. With some white showing on top. Perfect for Halloween!

Life has blown up. And these days I am of the opinion we are all living in some demented SIM/Matrix world? Game?  And whoever is in charge of mine is FIRED!!!! And possibly dead if I figure it out.

I have been betrayed! All I can come up with was food poisoning, but oh my jesusmaryjosephmarklukeanddaniel my body betrayed me. Three days of rebellion and I will simply say it required A LOT of cleaning and culminated in me standing in the shower in tears pleading with God for control of my digestive system back. And now we must never speak of this again.

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Medical stuff? I am thiiiiiiis I  I close to throwing up my hands. I give up. I got all my tests and referrals done, saw the ENT surgeon, had the crazy sinus CT, she deemed my cyst too small for surgery and my deviated septum too slight to need repair. So, I took my crooked nose and off I went.

Labs and ultrasounds and referrals later, my pcm is determined to send me to GI because my liver panel was elevated, and my cobalt and chromium were also elevated. Yeah, they’re supposed to be. I set off metal detectors with my bionic hip.

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And I had MRSA for 3 months. Go away. No GI docs, no more tests, no more poking and prodding, enough. I’ll live or I won’t.

I even gave in, went *back* in and convinced pcm-doc to finally do a chest x-ray and send me to pulmonology. Since my lungs seem to work when they feel like it. I got the report from the chest x-ray. Other than the calcium granuloma in my right lung that I knew was there, it says my lungs are clear. Oh, and there’s degenerative changes in my t-spine. I need a new spine. Paging Dr. Torres…..anybody??

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Is that everything? I think? Hell I dunno anymore. Like I said, has it really been a month?? I’ve spent a vast majority of the past week retrieving my digestive system, but the 3 before that? School, house, kid, cats, tests, referrals. Yes surgery. No surgery. Oh, and an upcoming mandated pharmacy change because my insurance is full of assholes. So I don’t have a choice unless I want to pay for all my scripts.

It’s been a little crazy.

 

 

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!

Silence

2001 was the worst year of my life. For a lot of reasons that have nothing to do with the events of September 11th. I don’t know if it was a gigantic cosmic “kick me” sign or Hell I just got lucky, but my family simply sums up the year with “death, lightening, and taxes”.

But none of those stories relate to today’s post.

September 11, 2001, I woke up to the phone ringing. I had been out of the hospital for about 6 weeks and was still recovering in a lot of ways. My kids were at school 6 blocks away and my husband was out of the country. So having gotten the kids up and off to school, I laid back down to rest.

The phone was ringing and ringing as it woke me up. I reached over and answered it. An old friend was calling me. “Is your TV on? Have you seen the news?”

“What? No. Why?”
I get up and go turn on the television, bringing the phone with me into the next room. The picture flickers on just as the first tower falls.
WHAT the hell???!

After the first plane hit, in the confusion, we all thought it was a terrible accident. Then the second plane hit. And the world as we knew it, the world as I knew it, stopped.

The first thought through my head was: Oh my GOD P’s in Europe. He’s okay.
Immediately followed by: Okay, we live 20 miles from the base, out in the middle of nowhere, the kids’s school is in the subdivision and I have a grocery store a mile away. We are going to be okay.

My husband was Active Duty Navy Aircrew at the time. And the reason the first thing I thought of his location was because of the type of duty he had at the time meant that he typically spent more time in Washington DC than where we were stationed in Jacksonville, Florida. He was in Europe and had no idea what was happening.

I spent the rest of the day juggling phone calls and watching the next six hours unfold on the television. My family was over 5000 miles away in Hawaii. His family was in Washington state. His crew was met by somebody’s somebody that handed them a SatPhone and  informed the crew they were being fueled up and sent directly back to the States as soon as their wheels actually touched ground in Europe.

He called. “I’m okay. We’re okay. I’ll see you soon.”

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I have spent the last 15 years being so angry that we were lied to. I wasn’t in New York, or Washington, or Pennsylvania. I didn’t bury a loved one because of those events, but I have cried. And I have been angry.

So angry that I didn’t realize that I never really mourned the lost souls. I never grieved. Grief has 5 stages. I stayed pretty much at angry.

Until I read this: Ground Zero

Go read it. Take the 20 minutes or 45 or however long it takes you to get through it.

And then ask yourself the same questions I found myself pondering: Why in God’s name do we build a museum? Could you go through that museum? Would you? Are you still angry? Have you grieved? Can you close your eyes and see it all happen? Has it really been 15 years??

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