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.
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.
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.)
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?
Did you know P!nk has a new album out? Yes? No? Xun, what does this have to do with anything? I love Pink. She’s a better, badass, outspoken version of who I want to be. I have lyrics from one of her songs tattooed on me…
…because I tend to be pretty self destructive and I want to give better words, better directive, better inspiration to my daughters. So I try to teach them, and I try to live the words… “Change the voices in your head, make them like you instead”.
Have you ever listened to the way you talk to yourself? Women, it seems, tend to be pretty unkind to themselves. Would you let someone say something you tell yourself to your loved one? Your mom? Your daughter? Your best friend?
My point is I have been listening to Pink’s new album on repeat because I woke up with What About Us stuck in my head.
It feels like there’s always so much going on. Wildfires, threats of war, natural disasters. How can you breathe when the world gives you so many things to dodge and worry about? I have family and friends in Northern California too close to the fires right now and I hate how helpless I feel. But I know that they are all staying on top of the news and keeping tabs on each other…
“You good? No evacuation orders?
“Nope, we’re good here. You?”
“Yup. Good so far here too.”
“Okie dokie….stay inside. Can’t breathe out there.”
My mom, my son, my uncle….I’m worried and I wish I could just put them in a bubble and bring them here where it’s been raining for the last couple of days. Just long enough to be safe…
Maybe that’s why I woke up with another black eye today. That’s the hidden truth of chronic invisible illness. What you see is not my reality.
The picture on the left is me just out of the shower, no make-up, half way between what the rest of the world sees and what nobody sees. Dark line under my left eye, and something that almost looks like a bruise on my left cheekbone. The picture on the right is hair and make up done and what I show the rest of the world.
One of the biggest reasons I think “invisible illness” is invisible is because on the days that the flares, the pain, the struggle is the highest, we disappear. I know I do. If my pain levels are higher than I can handle I tend to go off line. No social media, no writing, no phone calls, no connections. And call it vanity, but I definitely don’t leave the house if I look like crap. In fact, anyone that knows me knows I almost never leave my house without my hair and makeup done.
Just because you don’t see the struggle, the pain, the fear…doesn’t mean it’s not there.
What about us?
What about all the times you said you had the answers?
What about us?
What about all the broken happy ever afters?
What about us?
What about all the plans that ended in disaster?
What about love? What about trust?
What about us? ~ P!nk
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?
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.
It’s been a minute since I sent out a missive. When a lot is going on, I think I tend to step away from my blogging, fill it in with journaling, but my introverted nature takes over and I get quieter.
Where to start? Well, my labs from this year’s physical came back and Doc PCM was very pleased with my numbers. GGT came down by 110%, just a hair on the high side, but trending down so more more freaking about about liver function panels, etc. Seem me and my liver are mostly fine! So that was excellent news! Vitamin D, B12 excellent levels, cholesterol came down. The last bit to close that business out is a retest of my TSH and T4 in November to see if a change in my Synthroid might be needed, and that’s easy.
I had the requested thyroid ultrasound, and the report notes ” no nodules seen, finding consistent with Hashimoto’s Thyroiditis.”
So the next adventure will be me submitting a request for a specialist (Rheumatology maybe?) for pinning down that EDS diag-nonsense. According to my PCM (and therefore she who is the primary traffic director) it boils down to a lot of blood tests and my plan of care won’t change much, but (like I told her) my doctors like to have a diag-nonsense they understand. It doesn’t change my life, my care, or how I’m managed right now. I already have “benign brain neoplasm”, “left total hip replacement, Nov. 2007”, and a couple of other CRPS-type diagnononsense, so I get it.
But I know the docs like to have something to pull together all of these different surgeries, pain management, brain tumor, implants, etc. They like it when I have a diagnosis they understand, even if it doesn’t change much for the patient. And with a few of my doctors bringing it up to me, it was worth diving into research.
I don’t do Dr. Google or WebMD…..I read academic papers, case studies, research papers. And when so much fits, and I have 2 of the docs I see the most saying “yeah, go check it out.” I requesting the referral. So, that’ll be my next project.
So I guess that’s all the Xunnie medical updates:
Yearly MRI w& w/o contrast on my brain: Tumor is still there, stable in size. kthxbai.
Yearly physical: good labs, retest T4 & TSH in November
Thyroid ultrasound: measured, noted “Findings consistent with Hashimoto’s thyroiditis. No discrete nodules noted”
Still a brain tumor patient, still interesting to ortho surgeons. But strong and doing better this year.
My youngest daughter starts high school tomorrow and I haven’t quite figured out if and/or how much Imma freak OUT.
It isn’t just my youngest starting high school, it’s just that my youngest is starting public high school and I have been Homschooling her for the last 8 years. So yeah. Big change! BIGBIGBIG changes for both of us.
So after 8 years, it seems I am out of a job, relegated to “just mom”.
It’s good stuff for her, and I am so excited for her to make friends and join clubs, all the good stuff out there!
But as for me, in the quiet, at the end of the day, I stare at the wall and I wonder. Do I freak out? How much? Should I?
My youngest is my rainbow baby (and if you get that, I am so very sorry), she walked early….9 1/2 months old, 2 feet tall toddling ….walking all over the house.
Now at 14, she’s thin and tall…just a couple of inches taller (*spoiler alert: I am not, repeat: NOT surprised my kids taller than me.
And in my middle of this, I try to remind myself to be grateful, #blessed, we are thankfully able to get through all this.
I don’t have to look far to see that people are struggling.
Danny (my MIL’s son) had to have a quadruple bypass, then he had complications.
Nick, a family friend, motorcycle wreck last week , had to have surgery and has rehab and PT coming up.
Another friend , Danny, had ACL surgery.
Jeff had rotator cuff surgery,
Destiny got diagnosed with a brain tumor and is getting fitted for her mask for radiation therapy (a process I’m familiar with….I did it 3 years ago this week!),
and hub’s Aunt Connie passed away (sudden heart attack).
And finally, one of my favorite people just had her Dad move back in. He has advanced lung cancer. He’s a hell of a fighter.
I see all the struggles and I know how hard some of these things are to fight through.
My heart hurts. Reach out. #Loveoneanother. #Connect. #Support. Don’t wait…..tell them they’re important to you.
Hugs, love, positive energy…..<3 ~ Xun
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!
In the US we’re watching tensions built with North Korea and current administration. News out of Washington always seems like we just never know what’s really going on.
There is a 30 foot inflatable chicken on the Ellipse near the White House. I’m only about an hour or so from this area and THIS is HILARIOUS! I dunno if you have a twitter or facebook, but if you do, do a quick search for “giant inflatable chicken” and enjoy the commentary!
Doesn’t matter which side of the aisle you’re on, this is FUNNY!
The Trojan Chicken!
“I don’t think Trump and North Korea should be playing chicken with nukes.”
You only elect the giant inflatable chicken once!
“Yesterday: Trump threatens North Korea with “fire and fury”, Today: We are LIVE covering the giant inflatable chicken on the South lawn of the WH.”
“Giant Inflatable Chicken 2020!”
Okay…..back to your day…..
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.
There are a lot of moving pieces in my life. Like…..MY life isn’t moving, but there is a lot! of movement around me and a lot of change. And I get it. Life is change and movement, whether that might be forward, or backward, or temporary movement.
1. enrolled in the second part of her program, which means along with classes and papers, and reading, and.. and… and… (because it’s college), she’ll be starting her clinicals soon as well. She’s going through all this schooling to be a radiographer. I thought she was going for Xray tech, but this so much more. She kicking ass, so give her a thumbs up!
2. Her boyfriend of a year just dropped her without really any reason. Forget a good reason, it was shit and it was selfish and it broke her heart.
3. So on top of getting into the program, she quit her job to focus on school, and her boyfriend tells her “we’re not compatible”. W T F?!
4. And then her fish died today. She’s having a rough week.
My boy…well, not “boy”; 6 foot tall, 200 lbs (23 year old) man, but my only son and therefore still my boy is still plugging along at his training to be an electrician and he finishes in November. And he seems to like Northern California, so that’s all good stuff for him too.
But we are having a major shift in the house. My youngest has decided to go to the local public high school and get out there and meet teenagers and go do the high school experience. Which is awesome, don’t get me wrong, but she’s been homeschool since she was 6. I brought her home in 2009. We were just moving way too much at that point with the Navy closing NAS Brunswick, so I thought the better choice was to homeschool her under an accredited school to protect us, allow us to reach what she wants to learn, when she wants to learn and how she would learn. But it’s been 8 years now and she wants to start getting out into the world.
So, between random bouts of tears and panic attacks, I am getting the paperwork together to get this process started.
It just feel like a million things I’m directing traffic to, offering up time and whatever my girls need.
So if you need me, I’ll be hiding out in my blanket fort. With my tablet, my coloring book (and crayons), and maybe some snacks.
First an anecdote from yesterday: It was close to 100* F yesterday and my house is dual zoned climate controlled (I promise this is relevant). I keep it about 74F during the summer. (I try to save energy and all, but I already turn blue for no reason and we have like 20 solar panels on the roof.) I was down stairs for several hours and went upstairs to get the laundry and change clothes. As soon as I got to the top of the stairs, I noticed it was much warmer and felt kind of stuffy and humid. (Humid?? When you live on the Chesapeake?? Get out!! Okay, I’ll shut up and get on with the story…..)
I wandered into my room to check the Nest thing and it said that it was about 78F upstairs and had not been running. My first thought? “I wonder if the house thinks I’m not home because I had been hanging out in pretty much one spot downstairs.”
What? “My house thinks I’m not home??!!” Who thinks that?? Oh, right. Me. Because hubs built this house and wired it with all the goodies he wanted.
But still … WhoTF thinks “my house must think…..”??
- I got nominated for an award!! So I better get off my butt and work on that. And thank you, I am truly honored. I started this to write my way through the pain and uncertainty of chronic pain and illness and found friends and support and awesome stuff along the way!
- My youngest has decided after being homeschooled for 8 years (she did K, 1st, and 30 days of second grade in public school and I brought her home in 2009 at 6 years old y’all!) that she would like to transition to public school and get out in the world. So in between panic attacks I am trying to gather information for what I’ll need to register her, and working on transcripts.
Fortunately, she has been technically registered in a private school, to protect us and her from any local school districts and allow me the freedom to teach her what we want, how she wants, and keep transcripts, grades, and attendance records. So to the school it will be a lot like a student transferring in from out of state.
I have a list of requirements, I’ve let the head of our current school know, and I am gathering all the needed paperwork.
So now that much is done, and it’s Friday afternoon, I’m going to allow my anxiety (and occasional panic attacks) about it all to hit pause and go play the new season of Diablo 3.
(Also my oldest just got accepted to her chosen program for imaging tech and she’s super-psyched and focused and I am insanely proud of her. She’s focused and determined and working on a great program that is for HER , so please give the guy that just broke up with her a one fingered salute!)
Like I said…..changes.