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!
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:
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)
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….
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.
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.
The point of all of this is:
- I did, in fact, get this year’s results and the tumor is “stable with no change in size”.
- 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.
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?
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.
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….
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….
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.
It’s the easiest thing in the world, right? Just inhale and exhale. Take a breath. Coming up from underwater, you break the surface and take a breath, filling your lungs again. Close your eyes and sleep, all the while breathing without thinking about it.
Breathing is one of those voluntary/involuntary actions we have. We can choose to fill our lungs, or blow out as much air as we can. We watch a movie, laughing or crying, and still breath without thinking about it. Diving under the water, we close our windpipes, holding our breath, and then pulling air back into our lungs as we break the surface.
I have spent almost a year now (yet again…..long story, I’ll share that one in a separate blog) just trying to breathe. I thought it started with choking on chocolate milk and the subsequent MRSA infection in my lungs and my throat, but since I have had a cough for almost a year and I’m still coughing up green……yuckshitohmygodyuck… and they can’t find evidence of a persistent group of staph that may or may not have set up a new village, we’re still playing the “Do Xunnie’s Lungs Exist?” game. (Or maybe there’s a tree in Xunnie’s lungs?)
Today’s adventures were going back to the pulmonologist for a lung function test. This is the follow up to the seeing my neuro about the still coughing and occasionally choking (yes, that’s related to where my tumor is), then sent to pulmonologist because I’m still coughing, who sent me back to my neuro for a swallow test (yuck), which said yes my tumor is responsible for the dysphasia so neuro sent me back to pulmonologist (can we just call him Dr Lungs to save time?) who read my file again, made faces, and ordered my function test today. (Are you keeping up? Fortunately my neuro & Dr Lungs are across the hall from each other.)
Which brings us to right now. I’m still coughing (and coughing up green uck), so today they stuck me in a tube? chamber? thing, plugged my nose, and yelled at me to breathe really hard. Not fun. So I promptly came home and started coughing and lost my voice. Again. Time to brush up on my ASL anyway.
So we’re waiting for lung function test results. I just want to stop coughing shit up, but I’m pretty sure this is the next stage of my tumor.
I’m going to die by choking on frosting.
I tend to write after I’ve been chewing on something for a bit. Sometimes it’s just that day, or I might have an idea chasing me around for a few days, and occasionally it might even take me a few weeks to find a missing piece. And the the blog comes together and the typing starts. But, as I’ve said before, I am always writing. I have journals all over the house and the beginning of my third start of a book in a folder on my desktop.
Words are what I cling to the most.
Today’s musings come from the idea that occurred to me today. I am really good at reporting on the scans and tests I have. I share results and treatments. I describe surgeries and have shared my experiences in some pretty incredible hospitals. It’s easy to stick to the facts. Share the scans. Describe which specialist is working on what. It’s easy to hold on to the logical, scientific….sometimes cold, facts and truths of life in pain and treatment for an inoperable brain tumor.
It’s easy because then I don’t have to share what it’s like from the inside. And sometimes I tend to do that. There’s a bucket of reasons.
I’m an only child, and used to being by myself.
I cling to cold, hard logic and science as a defense mechanism.
I figured out a long time ago that it doesn’t matter if I’m scared or insecure and those inside feelings don’t have to match the outside demeanor.
Which means I am really good at appearing aloof, cold, and detached even when I might be scared, struggling, or hurting inside. But you’d never know it.I have a really great resting bitch face.
I was always new as a kid, changing schools just about every year. And always a little bit younger than everyone else, and smaller. I was 4’10” when I started high school! So I figured out that it didn’t matter how scared or shy, insecure, overwhelmed I was feeling, it only mattered what the image I put in front of them was. It doesn’t matter if I can or can’t kick your ass, just as long as you believe that I can.
I have been told by people that eventually became close that at first they thought I was “cold, aloof, stuck up”. I hope I’m really not any of those things, but I do know I am very good at putting on an appearance.
All that being said, today I realized I don’t write a lot about what it feels like in here; brain tumor, artificial hip, and all. Truth be told it occurred to me because I have been a frickin bitch about my manchild having a stupid cold. (Mostly because the last time we did this, it was a thing. FOR MONTHS)
I have no immune system. This is well established. Start with autoimmune, throw in some radiation, and sprinkle a little of the MRSA I had in my lungs for 2 months last year. No immune system. No, none, nada, no-thing, nien, NADA. My family members get a cold…..I get pneumonia in both lungs and end up on in-home O2 for 3 months.
However, it is cold-and-flu season in the NorthEast. And people are stupid. So after my oldest daughter told me she had a nasty cold, I knew there was one lurking in our town. (She doesn’t live with me, and she’s better now, but still….)After 2 nights of sleeping next to Mr-sounds-like-a-freight-train and not even my earplugs were helping, he declared he did feel a little…sniff, sniff….maybe a little congested or something. And went to go sleep in the spare room. (Or as he put it last time “I gotta sleep in frickin Siberia!!”)
By last night he sounded like shit, and to my delight, today I got up to him “I decided to work from home today!!” I don’t let him within 5 feet of me. Don’t touch my stuff, don’t breathe near me.
It might appear that I’m just being a bitch, but…
I am very sick. The symptoms of my tumor are progressing. I’m having a harder and harder time remembering things and I struggle with swallowing and/or choking at least once a day now. The choking thing scares the shit out of me. But you wouldn’t know that because I’m just being a bitch.
So yeah: the outside is Xunnie being bitchy because retired-Chief-manchild has a frickin cold (and men are such babies).
“Don’t touch my stuff.”
“Go…..away. Go stand over there.”
“Go take your cooties somewhere else.”
The inside? I’m scared. I’m struggling these days anyway. I have a hard time swallowing at least once a day. I still have that stupid cough. It’s time to head back to pulmonology and plead with them to just finally schedule the broncosopy because I still cough up green uck. Between the rise in clumsiness ( I HATE stairs), the increasing trouble with my memory, and the everydamnday choking thing, I’m thinking when I see my neurologist in 2 weeks she’ll probably be thinking more scans wouldn’t be a bad thing. We don’t know how fast this bad boy is growing yet.
So, the inside and the outside don’t match. Don’t let this bitchy face fool you. I’m hurting, I’m scared, I’m spending time making my peace with dying.
Outside I’m cold and kinda snarky. Inside, I’m just a little girl that’s been alone a long time.
So, this being the second day of 2017 means we made it. We survived the frickin dumpster fire of 2016…
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!!)
…and gotten half of the results.
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.
The kid got her most-wanted Xmas gift: A Newt Scamander coat
…and I got an awesome hoodie from my Mom.
Hooray for cancer/tumor support and research!!
And the fur babies got a new scratchy-scratchy! They love sitting on their new couch!
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!!
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”.
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.
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.
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.
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.
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.
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!
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.
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.
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
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.
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.
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??
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.