Tag Archives: frustrations

4 Years

Four years ago, within 30 days…
We signed the contract to have my house built, my dog died, and I was diagnosed with what ended up being an inoperable brain tumor.

I’m now sitting in the house I designed and we have just painted the downstairs bathroom, put new curtains up in the office, and gotten new (to us) living room furniture! Three years into living in said house, we’ve been slowly working our way through painting rooms, and fixing up stuff that we’ve shlepped around from duty station to duty station. This summer we’re planning on painting my daughter’s room and the spare room, and painting her desk as we move some of the furniture around upstairs.

My puppers is on my mantle in her pretty little oak urn with her collar around it, and someday we’ll plant her ashes into a tree in the yard.

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And my tumor is still there, still inoperable, and still the same size and shape. It’s still a journey, but I am mostly stable.


I wrote this a couple of weeks ago, then set it aside for the Great-FreakTHEEFFOUTTTTT of 2018 when my pharmacy miscounted my long acting pain meds and I freaked the FUCK out because I had visions of the pharmacy to tell me to figure it out, my pain docs to tell me to keep better track of my scripts, and no pain meds = no Xun. It wasn’t a  great 12 hours and I realized how close I am to the line of not deciding to live in chronic pain.

It was solved quickly and relatively easily….moving on….

I’ve been thinking about how much I blog. It’s not as often right now. I started a blog back in 2009ish? It’s gone through some changes and at least one major move from one platform to another. The last four years have focused more on the tumor near my brain stem. It’s ….. stable? Mostly. The tumor is the same size and shape as far as we know. But the effects of said tumor have progressed. I have dysphasia, confirmed via swallow study. (kind of a weird thing to go through) Aphasia when I completely lose words in the middle of sentences. Those may be connected to absence seizures. But I find I forget names of things, people, places….it’s easily the most frustrating thing about my current existence. (I spend a lot of time muttering to myself “I’m a frickin *writer*, I NEED words!!”)

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I’m rambling but basically it’s just thoughts about where I’m at right now. I’m medically stable. No more turning my life upside down and moving every year. No more waiting for orders or duty stations. I don’t fight with…well, anybody anymore. There’s just not the fight in me.

Right now, my life is my kid’s school and theatre group keeping me busy, and now that she’s on summer break, I’m just juggling house, kitties, her activities, and my mother coming for 10 days. My doctor appointments pick back up next month. I had a nerve study done of my left arm because I was having pain in my ulnar nerve and numb spots on the back on my hand, my index finger, and my thumb. In the ENS they tested motor nerves and there’s something going on in my forearm, so I asked them to send the report to my neurologist and I see her again July 30th.

Right now, my life is fairly stable. June 23rd was the 6th anniversary of my Dad’s passing.

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My kid keeps me busy. I probably don’t blog more often because I don’t think I’m very exciting right now.

But I did have a really vivid dream the other night that I’m thinking about writing about. It made me miss someone…..but it would be a great movie…

 

Crisis Mode

I actually have been working on another draft about life, the universe, and everything as I come up on four years since I was diagnosed with a brain tumor, but last night I had a melt down and went into crisis mode.

I see my pain specialist more than any of my other doctors and because I live in a state that is making progress, but still leaves a lot of room to be desired on the part of chronic pain patients, I get my scripts filled every 28-30 days. I have five scripts that have to be filled every month and another three that get filled every three months (muscle relaxers, synthroid, etc). Of the five, I have three that *must* be filled every 29 days (give or take a day).

I follow all of the rules. I sign my “contract” every year. I jump through all the damn hoops pain patients have to fluffing follow. I accept that the doctors, the pharmacists, and my insurance all fluffing track me. I have had the same pain doctors for over 6 years. I had the same pharmacy until last year when insurance made the choice to kick CVS out of our plan, so I went back to Walgreens. I live in a fairly small town, so I see the same people every month.

I follow all the damn fluffing rules!!

So, when I went to get my nighttime doses of my meds last night and realized I do NOT have the number of long acting pain pills I should have I panicked!

I don’t know why I didn’t notice sooner, but I last filled my scripts about 10 days ago, so I was missing about 2 weeks worth of pain meds. I freaked the **** out. If you know what it’s like trying to fill a schedule II script, you understand the fear that comes with not having your meds or being able to account for it. The rules are: we don’t give a fluff if you lost them, flushed them, or had them stolen. YOU are responsible for your scripts and your meds, so buckle up.

The one fear my husband has is not that I’ll have a seizure halfway down the stairs and the cats don’t know CPR, or that I’ll forget where I live and not be able to drive home, or even chocolate milk. (seriously, how many people almost die by chocolate milk? …..don’t answer that.)

It’s that something will happen and I won’t have my meds. Because that means withdrawal, and we both know I ain’t surviving that. Judge me, but my pain scripts mean I can be a “theatre mom” for my youngest. Or clean my house. Or get the grocery shopping done. It means my husband can work, and travel when he needs to, and I can run my house and be a grown up.

But suddenly, I did not have the ability to survive until my next script would be filled. I collapsed in fear. I didn’t even cry myself to sleep as I tried to figure out what to do. I just sat there in terrified silence, contemplating ….well crisis mode.

Fortunately my husband figured out that he needed to go talk to the pharmacy because  if their pill count was off I could prove my script had not been filled properly.  He was at the pharmacy this morning when they opened and went over everything with the pharmacist. They checked my file, checked their pill count, and discovered they were “over” as many pills as I was missing. It ended up being a relatively easy fix with a lot of apologies from the pharmacist, and the whole thing was over within 12 hours.

This is the world I live in. This is why I jump through the hoops, and follow the stupid rules. So that in the event something like this happens, I can show that I am a good and cooperative patient. Today I’m still feeling a little fragile, and my wrists are a little sore from being in a dark place. (No, I didn’t actually hurt myself. But I was definitely in crisis.)

I live in a very small box, with a lot of rules, and not a lot of room to fight back. This is the reality of being a chronic pain patient in the US right now.

Even More Updates!!

April was nuts. I’m still trying to remember all the things and the stuff and the sharing…

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I live off my desk calendar

Rehearsals, a concert, prom, tech week….

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P!nk was amay.ZING!! And worth every penny for the not-exactly inexpensive tickets! Seeing her was bucket list stuff!

Four weeks of rehearsals for the kid because her school was (is …we have 2 more shows this weekend, and I’m finishing the editing of this post on Saturday afternoon) performing Anything Goes.

 

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Rehearsals were 4-5 days a week, weekends were set builds, and one weekend was a dance intensive workshop to work on choreography. The kids have worked their butts off and it shows! They have put together an incredible show!

We got through the ….um, “stupid” business trip and my husband got back on April 4th. We jumped right into April insanity; meaning 5-6 days a week of rehearsals, me interrupting rehearsals on April 17th to drive up to DC to see my favorite show EVAR, prom on April 21, and then right into tech week. “Tech week” means full dress rehearsals and long days the last week of April. I volunteered food and serving the cast and crew, the band, the faculty, and the parents and volunteers two out of the three days.

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Social Xunnie ; being helpful & feeding teenagers Photo: Ramon Tuazon

Watching how many parents and teachers step up and volunteer to support the show is inspiring. They’re working HARD.

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Seriously, I live and die by my desk calendar. Tech week

In the middle of tech week, we HAD to get tickets to squeeze in seeing Infinity War because we’re a household of hopeless geeks and I flat out told my kid I have to see it or stay off the internet until we do! Fortunately, we we able to find tickets for an 8 pm showing on Thursday night. (& we squeezed in a matinee on Saturday)

No spoilers. Don’t @ me. I’ve seen it twice so far. I won’t ruin anything for anyone else. 😉
But we will be seeing it again. Apparently we’re masochists.

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spoiler free commentary

Finally Friday, April 27 was opening night!

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I am so proud of these kids. And I can’t even begin to describe how grateful I am for the teachers, staff, directors, and parent volunteers giving up all the time and work for this production. The kids have worked so hard and *my* kid is ecstatic about the chance to perform and all the support.  This is me gushing because this is a new chapter for my youngest and it’s awesome to see her doing the next thing and loving the experience and support she gets.

We’re closing out a long and busy couple of months. One three-week-long business trip, one snowstorm, 4+ weeks of rehearsals, three gun incidences in our schools, one trip to New York, one P!nk concert, six high school musical performances, and one blood draw (yesterday) for new Cobalt and Chromium levels for my ortho surgeon when I see him again in just over 2 weeks.

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Gentle hugs, a couple of deep breaths, and and 2000 words later it’s time to move forward. May is Brain Tumor Awareness Month! #gogreyinmay

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❤ ~ Xun

 

Very Overdue Updates

I have literally been meaning to write an update for over 2 weeks, and then I got a comment giving me the “hey, you good? you needa post” and I realized how unbelievably overdue I have been for blogging. I’ve been working on a post in my head for the last 10 days (ish), but it seems I don’t have Jarvis to translate that noise into an actual post. Who knew?!

So….um, where to start? My last post was me losing my ish over a school shooting here in our little rural we-have-Amish-buggies-sharing-our-roads and it brought everything up close and in my face.

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ABC News

 

That was immediately followed by the National Marches…

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friends & loved ones are in there….somewhere

…and a lot of noise and conflict across the country. I know people on both sides of the debate and having spent the last 4 years or so teaching my kid American History I understand the need for debating this issue. But then…

Just 3 weeks after the March for Our Lives (March 24, 2018) an 8 YEAR OLD was arrested for bring a loaded handgun to school on April 18, 2018. IN MY COUNTY. In my little corner of rural small-town America. And I lost my shit.

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THREE gun events in our little county. In. ONE. School. Year. so far.

That is not okay. I am not okay.
The first one: two students being arrested for threatening to shoot up the school MY kid goes to just 2 days after the Parkland shooting. They were heard and reported and it was stopped, but how terrifying is that?!
The second one: The shooting at Great Hills High School. That affected us up close. There’s only three high schools in our county. 1400+ kids were evacuated from GMHS to LHS for reunification. Jaelynn Willey’s loss affected us all. We’re a small community and the shooting was an unimaginable shock.

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I walked out of a meeting at my kid’s school and saw this on the wall. It took my breath away. 

The third one: an 8-year-old being arrested for bringing a loaded handgun to school. A third grader. Both parents are active-duty military. A girl on his bus saw it and reported it.

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The kids are being told over and over and over again “See something, say something” and they did and it stopped two tragedies this school year. But it is breaking my heart. We’re scared. We’re frustrated. This is insane.

February 16, 2018
March 20, 2018 (Jaelynn was taken off life support on 3/22/18)
April 18, 2018

These are the dates that affect us right here in my town. This is a nation-wide debate but right now it’s up close and in my face and I can’t breathe and I don’t know what to do.

In the last month I’ve also had a lot of really awesome stuff keeping me busy and I’m going to write up a part two to the updates and try to get that published tomorrow. But it’s been busy and crazy and hard stuff is in my face and this hurts and whattheHELL?!!!

Yes, there’s lots of good things and experiences I’m going to share. Yes, we have been lucky and my child is safe but I’m processing.

More updates being written and I promise they’re the good stuff!
❤ ~ X

 

Stress & Other Drugs

I get really quiet when I’m going through something. Usually when my physical pain is climbing or my stress levels are raised…..or life starts kicking back, I’ll write less. I don’t even journal as much as I know I should. Writing creates a pathway for me to find my way through the pain…..well, most of the time. I know I should write more, but I guess it’s a defense mechanism not to. But the positive side is when I do start writing again, I know I’m finding my way back.

The last week in particular has been pretty stressful. My SO is on some crazy business trip to somewhere to do something. The details are fuzzy and the leaving was mostly just 24 hours of whattheactualfuck, and then he was on a plane. I have a pretty general idea of where he is and when he could return, but in the interim, I’m dealing with all of….well, this…..by myself.

The Parkland shooting happened on February 14 (as most of us know). What you may not know is that by February 16, we saw two boys arrested for threatening to shoot up my daughter’s school. On the heel of these incidents I saw my daughter, her friends, and my friend’s daughters say things like “I’m wearing my running shoes today (instead of my cute shoes) in case we have a shooting” ; “Mom, remember what I’m wearing today in case my head get blown off”; “If I hear shots I can jump out that window and run away from school property”. Yes, I heard these all said. No, they weren’t trying to be funny or smartasses. Or waaaayyy too irreverent. This is their reality. They’re scared. And now they’ve had enough. On March 14, my daughter wanted permission to participate in the walkout. Of course I said yes. They’re standing up, and speaking out. They deserve to be seen and heard.

SIX DAYS later, on March 20 there was a shooting at Great Mills High School. Every school in the county was immediately locked down, and the GMHS students were transported to LHS (my daughter’s school) to be reunified with their families. The shooting was just before 8 am, at the “other” high school, but everything about that day went sideways. LHS was safely on lockdown, but classes were moved around and schedules changed to accomodate for the 1400+ students coming to this school.

Kids from LHS were signed out by their families so they could wait with their parents for family and friends that would be coming from GMHS. It was a little busy, but it was handled with amazing ability and compassion from all of the teachers and staff, the students, and the first responders. Somehow, we made it through that day.

The next day Winter Storm Toby hit the East Coast, and my kid and I hung out at home and watched several inches of snow fall. It felt like the universe gave us a minute to breathe.

By Thursday, school started back up for LHS (Great Mills will be back April 2, after Spring Break). And on Friday I got up at 4 am to drive my kids over to meet her school’s tour bus for the Theatre Group’s planned trip to NYC for the weekend!sbc-nyc

So….to sum up my week: Monday, normal; Tuesday, school shooting; Wednesday, snowmaggedon; Thursday, 2-hour delay for school, otherwise normal day w/ play rehearsal after school, Friday, @ the school at 4:45am to meet the bus for the trip to NYC!!

Saturday: March for Our Lives Marches happening in 800+ cities in the US and around the world. I’m proud of these kids, and I’m supporting the effort 100%!

I’m dealing with a lot by myself right now, but I’m dealing! Which means trying to be protective without throwing a fuckit bag into my car and driving for my mom’s house in California. I’m dealing with it…..tearing up at the news, but trying to be strong.

Until.

Until I logged into my FB tonight while watching one of my favorite movies (Love & Other Drugs….seriously, it takes a look at life with a chronic, progressive , incurable illness, and tells us we are not alone. Watch it! 😉 )

The first post that popped up was a friend who lives here, who went through the fear and hurt this week, who has friends at GMHS, who gets what this is like going through this with your high schoolers. They might be taller than you, and (in her case) getting ready to leave for collage, but they are still your babies!

To borrow a few of her words, she wrote “From the time my children were handed to me, my purpose in life has been to make sure they are safe.” She talks about car seats, and holding their hands to cross the street……and monster spray.

That’s how far I got before I just sat down and finally cried out the week’s fear, and hurt, and anger, and uncertainty. I set down my tablet, and I just cried out everything I’ve been needing to cry out for days….maybe even weeks. I sobbed, and I allowed myself to cry however I needed to, for as long as I needed to. And then as I shlepted myself over to the powder room to get more tissues, I realized my whole face was wet, as was one of my pj pants thighs. So, I sat there, and tried to breathe and come back to center and I realized S’s post said “monster spray” and that’s what opened the gates.

I have done everything in my power to keep my babies safe. Cribs, playpens, carseats, bed rails,….and monster spray. K and D, my two oldest, are 18 months apart. So if one or the other had a scary dream, or was worried about monsters under the bed, we  created ” Monster Spray”. Pretty little pump spray bottle, looked pretty, smelled good. No monster guarantee.

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close approximation of ours

 

It took me a little bit longer, and a couple of tougher experiences (stories for another time) for me to finally have my little Bug. She’s my Rainbow Baby, and her big sister is as protective over her as any momma you ever met!

But after this week, I couldn’t scare it away with monster spray. I couldn’t shield her from it, or change it. She marched last week. She saw it happen. She’s speaking out this week from New York. She blanketed all of her social media with #ENOUGH #enoughisenough #neveragain

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I’m proud of her. I agree. NEVER AGAIN.

All of the fear and stress……..I guess I just needed to cry it out. She’s safe, we’re okay. But OH! my Marvel!!! It has been hard!

**deep, deep breath** (This is why I have “ana’laigh” tattooed on my left forearm, Gaelic for breathe.)

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Just….breathe.

And tell the people in your life you love them!! ❤ ~ xunxun

Oh Shit.

The last week has not been easy for me. I watch as the country gets torn apart from the latest massacre. The kids are going to speak to their state legislatures today, for which I am incredibly proud of them and in awe of their strength and their fight.
More are heading up into DC.

They’re not wrong. When is enough ENOUGH?!

I’ve watched the arguments and the fear spreading across the country. Family, and friends, and acquaintances, and perfect fucking strangers fighting like hell on the internet and in person. Demands for NO MORE DEATHS. Arguments for second amendment rights. The right and the left slinging nasty words at each other.

That’s not doing a damn thing and today….right now. I don’t give a fuck about the arguments anymore.

I didn’t sleep last night, and what sleep I got was punctuated by nightmares. And then I get this news today:
Students arrested for threat of mass violence.

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WJLA Washington, DC ABC News

That. IS. MY. KID’S. HIGH. SCHOOL.

That post yesterday? That fear? It’s real.

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ENOUGH IS ENOUGH.

Check Yourself

Like the rest of the US I have been watching the news over the past 5 or 6 days and trying to figure out what to say….or do…or think. 17 more dead. This is not okay.

I sat here this morning catching up on news and social media and I came across a friend of mine’s Facebook post about sending her daughter off to school this morning. It was just a quick blurb inviting thought by sharing that her daughter said “remember what I’m wearing in case you have to identify me.”

I had tears in my eyes and I had to catch my breath. Her daughter goes to the same high school mine does.

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I live about 9 miles or about 15 minutes from my daughter’s high school because we live in a pretty rural county It’s middle America. (Seriously google it….”Middle Earth” pops on my zip code)
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There was an incident several years ago at this school. Yes, even all the way out here, we had a “threat”. I didn’t have any kids in the school at the time, but I watched the news coverage as reports of a handgun in a student’s backpack prompted a lockdown of the high school, the tech center, and the middle school because they are all essentially one campus. The parents could not get to their kids and gathered at the county fair grounds across the street from the school.

Tears in my eyes as I tried to imagine NOT being able to reach my child and protect them. Anybody that knows me knows I am a Mama Bear. DO NOT mess with my kid. Do not threaten my kid. Do not get between me and my kid. I will hurt you.
My oldest was in a car accident almost 2 years ago. I got the phone call and pulled up to the accident scene in less than 10 minutes. (To be fair it was about 2? 3? miles away)

But I have never forgotten what that felt like to watch these parents stuck on the other side of a 4 lane highway (I use highway loosely….main road?) unable to go get their kid in the middle of a lock down.

So when I read S’s post this morning, I stopped. Time stopped. I couldn’t breathe. Because that is a horrible truth. That is an unthinkable truth.

This has to stop. #NeverAgain

I’m watching my country, my family, my friends, my acquaintances, people I care very much about, and people I’ve never met argue over opinions, fault, policies. This is insane.

Do you get that?! This is crazy. We are supposed to be a First World Nation. We are supposed to be The American Dream. If you work hard enough you can have anything, remember that?? Milk and honey and opportunities.
But we have more gun violence, more deaths, more fear and threats than many Third World Nations. People are afraid to visit the US because they’re afraid they will be shot like in the Wild West.

But Xun….2nd Amendments? Individual rights? Who are YOU to tell me what I can and can’t do?!

To that I say, Check Your Privilege.

I thought about this a lot over the last few days. I am white, middle America, middle income, living in a house we built 3 1/2 years ago, standing in a shower in a bathroom I designed, crying this morning because time stopped for me as I thought about what to say or how to write about this. Suddenly  it was 2 years ago when I lost my sister, or 5 1/2 years ago when I lost my Dad and I was standing in the shower trying to figure out how to live in a world without them.

Because 17 funerals are being planned right now. Do you get that? 17 people that did nothing more than get up and go to work or to school last Wednesday, that didn’t know the shooter from Adam, are now gone.

BUT…

I am watching the next generation, the survivors, stand up and say NO MORE….

Emma González is amazing and brave and strong. And I am watching the news of her and the other students, the other “kids”, organizing a fight for #NeverAgain. Speeches, walk outs, marches. These kids and their community are fighting for everyone else. No more mass shootings. More deaths. No more sense acts of too many people dying in one day for what?
NO MORE.

 

Marjory Stoneman Douglas High School Students 

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I debated what to title this post. Because I’m watching the news and the debates on social media. What do you say? How do you talk about it? It’s been almost 19 years since Columbine and can you say anything has changed?

17 funerals, memorials, celebrations of life being planned. 17 people gone. 17 more gone. In an affluent suburb in Anytown, USA.

So check yourself. Check your privilege. But for the Grace of God go I.

 

 

Lazy Xun & the Updates

So…..um, hi. It’s been a minute. I can honestly say I have been meaning to sit down and write out an update since my last post was…..um, a minute ago.  But I plead that we have had 3 birthdays, 2 holidays, 1 school play, 2 auditions (the kid), 1 school break, 2 doctors appointments, 3 scans….and a partridge inna pear treeeeeeeee!

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Overwhelmed by holidays and birthdays and general end-of-the-year insanity, I kept meaning to send out an update, but when I had time, I didn’t have motivation. And vice-versa. I kind of managed to get through holiday insanity this year, but I’m not really sure how because it felt like I didn’t have enough time or my act together. But….we made it.

So. Updates. I actually have something.

My yearly check-in with Dr. PCM-Traffic-Director last summer lead to follow up labs 3 months later in November, and surprisingly Doc added Cobalt and Chromium checks to my labs. B12, Iron panel, TSH, T4, CBC were all pretty good. Most of my levels have stabilized since the MRSA mess of 2016, and thyroid levels meant no change in my Synthroid dose. But my Chromium and ….well, mostly my Cobalt levels sent doc to an ortho surgeon referral.

I have a giant hunk of metal for a left hip. I’ve covered that pretty extensively in the past…

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new hip, 2007

…and November 19th was the 10th anniversary of my hip surgery. Diagnosed in my 20’s, snarled at and told to lose “as much weight as I can”, and several ortho docs attempting to get me close to my 40th birthday (I had the surgery the day before my 34th birthday) later, I got a shiny new hip.

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My docs have just started watching my cobalt and chromium levels in the last 4?ish years and I have learned that there’s:

  1. normal cobalt and chromium levels
  2. high cobalt and chromium levels
  3. implant level cobalt and chromium levels
  4. high implant cobalt and chromium levels

and unfortunately us implant patients pretty much all eventually end up climbing the ladder.

Right now my Chromium levels are acceptable (2.0: 0.1-2.1 mcg/L serum), but my Cobalt levels are creeping up (2.3: 0.0-0.9 mcg/L serum), so off I went to a new ortho surgeon.

Ortho docs like my case. They get to learn from me and I’m a pretty unusual case. At this point it’s labs and x-rays, basically yearly. I have a whole file I keep with my op report, yearly scans, etc. Ortho doc went over my case, read my file, checked my labs, examined me, and sent me down for this year’s scans.

Two things popped up this year.

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One: it seems pseudotumors can pop up around the implant area, and my cobalt levels indicate that may be the case with me. He found one spot in particular to watch, but conceded it could reabsorb on its’ own, or it could just be bowel gas. Options for further studies include a higher level MRI to account for the affect from the metal or an in-office procedure to get a sample from my hip to test cobalt levels. I told him “That does NOT sound like fun.” He just looked at me.

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hip, 2017

Two: I have Myositis ossificans (calcified muscle tissue). Huh. I didn’t know that could happen.

So, after I told him shoving a giant needle into my hip joint wasn’t my best idea for fun, he conceded that he could check my levels again in 6 months and we can go from there. He seems pretty good, and I like him. I think the only argument we may have is if he decides I need a revision. I’m not really open to hip replacement revision surgery. That’s why I had the surgery I did 10 years ago. But it’s really interesting that most people just assume I would have the surgery.

I guess we’ll see…the story continues in June….

Processing Time

One of the biggest changes I have noticed since being diagnosed with my brain tumor (headaches, vision changes, and falling down the stairs 4 times so far notwithstanding) is that I have days I have trouble processing time. I can look at the clock 4 times in 5 minutes and not being able to connect what time it is.

I understand morning, afternoon, and evening but I will have whole days when I have trouble understanding the clock when I look at it. It doesn’t matter if I look at a digital clock or a traditional clock.

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For example, if I have plans or an appointment at 1:30 pm and I look at my clock and see it’s 11:00 am, I know I have time before I need to go, do, meet, see, ect. But I have days that I can look at the clock 3 times in 10 minutes and not understand what 11 am means, so I do the math in my head again and know I have 2 & 1/2 hours. But it’s just on these days I keep looking at the clock and it’s just difficult for me to understand it.

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I think maybe it’s because:
1) I already struggle with subjective, abstract ideas. In college, the class I had the most trouble with was Critical Thinking. I fought with my instructor because I didn’t like being graded on something subjective.
I also think the Phantom Time Theory might have something to it, and I find the whole idea that the date and time is what we say it is because we’ve set it at some specific time. Clearly I’m not a fan of daylight savings time.
2) I think maybe the part of my brain that understands abstract ideas might have been damaged by the tumor and the crazy lasers they were shooting into my brain. (okay….radiation therapy, close enough.)

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According to the many, many, many scans of my brain and my tumor, the mass seems to be in the left prepontine area, right up against my left 5th cranial nerve. It’s too close to my brain stem for surgery, so it’s me and my tumor trying to figure out how to exist. So I figure out how to back myself up with notes, alarms, or timers.

I think human beings, especially Americans, struggle to process time. In America, we typically use the Gregorian calendar based on the idea that it’s 365.25 days each year, based on solar cycles. Other countries, and some businesses, use the Julian calendar. I learned that when I worked for Prudential Insurance too many years ago for me to tell you when it was.

I even understand military time and that Americans seem to write the date differently. October 15, 2017 vice 15-10-2017.

But…brain tumor or no brain tumor, what would you change about how you handle abstract ideas like time if you didn’t know what the rules were?

It Hurts

When I’m overwhelmed or there’s just a lot going on in my life, I tend to get really quiet. Yes, I’m aware that when it would make the most sense for me to write it out, cry out to the world, I tend to shut down. Retreat into myself. I’m aware. I still call it a survival mechanism. A leftover from a tough childhood.

The things that hurt…

…on the day my sister (in law) died, my son kicked me out of his life and it’s taken me about a year and a half to get something that almost resembles the beginnings of a start. But he’s my son, that’s my boy. I’ll take the pain. There’s no way I’m walking away.
…I miss B (my sister) all the time. I wonder if I could have done more for her. I talk to her a lot. Which sounds like I’m just a leeeetle bit crazy. But I believe she’s around. I think….I hope that we can have these conversations and she hears me and I can find bits that tell me we’re communicating.
…I miss my dad. I miss my dog. I like to think they’re off in this amazing better version of here. And together.

…And my biggest secret. My wedding anniversary is supposed to be tomorrow. I mean …it still will be. The date marking an event that happened 18 years ago will still exist. But mostly only because I’m still alive, sometimes against my will, and I’m still here. I packed up and left for about a year, 10 years ago. But all hell broke loose in my life and I got scared. I retreated back into a life that was familiar. I told myself I was happy.

Then I got sicker and sicker….
Chronic pain, complications from my hip replacement, pneumonia in both lungs with O2 stats dropping to 86%,leading to in home O2 for 3 months. More surgeries, more treatments, all while a full time college student, all while moving to and through 3 different states, all while trying to make a marriage work and take care of my kids and my family.

Tomorrow is my wedding anniversary, 18 years ago I stood at the base of the Ko’olau Mountains and recited words from an event I wrote.
Now, I don’t even know what “thing” (silver? cotton? silk?) the anniversary stands for. I don’t have a card, or a gift, or a plan. Because I am unhappy. Unhappy as in I go to sleep more nights than not hoping I don’t wake up.

I’m sorry to think that for my mom and my kids, but I just feel like my reasons, my purposes…are done. They’re over and I can go now. I mean I’ve lived through 6 surgeries, septicemia, a brain tumor, radiation, and MRSA . And 2 blood transfusions. When is enough enough?

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2016 was an all out, no holds barred suckfest. Universally.

But 2017 leaves me feeling like my life is upside down. I’m unhappy. And I don’t fight…..well, with anyone anymore, but my husband in particular. And very few people know that or know why. But the fight has been chipped away, and there’s not much left.

So, yes, I am very quiet lately. I am struggling. I am unhappy. And those are the kinds of things that leave me retreating into myself.