Tag Archives: stuff

Hip Hip Hooray!

So in spite of my best efforts to ignore anything that even remotely resembles a birthday, my mom called me today to remind me I have a birthday tomorrow. We disagreed about exactly which birthday it is. Suffice to say we’re (read: I’m) going with I’m 36.95 plus shipping & handling.

BUT one thing we can agree about is 10 years ago today I had my hip surgery! A cutting edge, new, all-metal hip replacement designed to last the rest of my life. At the time of my surgery, it had only been FDA approved for about 14 months, and from what I can tell, it is not done much, if at all, anymore. And I was unbelievably lucky enough to have the #2 U.S. surgeon, who had, in fact, traveled to Birmingham, England to train on the surgical technique!

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So today I celebrate that I have a hip I can still walk on, and I am grateful every day for that ability!

Whether or not my brain tumor is related to said hip implant remains to be seen, and they just drew Cobalt and Chromium levels last Thursday, so I will keep you up to date when I get the results. I already know my chromium levels are high, but they’re normal-people high, not implant-patient high. Or at least they were 2 years ago.

Whatever. Ya’ll ain’t getting my implant back. I am not open to a revision surgery. It’s really damn hard to learn to walk again in your 30’s.

Side note: also, 15 years ago I was within 12 days of delivering my youngest child, my Rainbow Baby, my miracle I went through Hell and high-water to have.

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And the last thing to share this week is that I got to do a bucket-list, incredibly cool thing last Friday night. We went to the Kennedy Center and got to see FLUFFY!!! (Gabriel Iglesias!) (& if you know who that is, you know how funny he is!)
I don’t think I have ever laughed as hard as I did at his show. I had tears rolling down my face, bright red (thank goodness for awesome water-proof mascara). It was one of the best things I’ve gotten to see!

We had awesome seats, second row, stage right.

So, Happy Birthday Hip. I got to see Fluffy. And cobalt & chromium levels coming this week!

 

*gentle hugs* ~ ❤ Xunnie

7 Photos, 7 Days; Day 7!

Merry Samhain! Happy Halloween! And a good boo! to you all!

Today is my last day of my Photos From My Life series. Did you guys like anything in particular? I always think it’s interesting to see photos from someone else’s life. Where are they? What do they tend to take pictures of?

Some people take pictures of places, or things, moments, or other people so they can hide behind the lens instead of being in front of it. Some take pictures of places and people they love to remember.

As I was looking through my social media today, I counted how many of the past years I have thrown on scrubs and dressed up on Halloween as my alter ego: Meredith Grey. Since I created my personal Facebook page in 2008, I have dressed in scrubs 6 out of the last 9 years, with 2 other years as Alice (one was Evil Alice, inspired by Warehouse 13), and one year I was Sarah Sanderson. (and if you don’t know who that is, get your booootay over to Amazon and order Hocus Pocus stat!!)

This year I am dressing up as an Arkham inspired Steampunk Harley Quinn. (I’ll post pix tomorrow! The girl child is doing my make up!)

So, onward to the final Black & White Photo for my series!

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Merry Samhain! ❤ ~ Xun

7 Days, 7 Photos; Day 6

Hello Spoonies! I won’t say happy Monday because….well, does anybody like Mondays? On my Facebook page for the blog I try to remember to do “Music Mondays” because 1) any reason to listen to music is a good one! and 2) music helps reduce pain (and it makes a fabulous painscape!)

Today’s Photo:

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Tomorrow is day 7! Suggestions? Inspirations? Anything you hope to see?

❤ ~ Xun

 

7 Days, 7 Photos; Day 5

It’s a cool, rainy, windy Fall Sunday for us in the Northeast. And a bit somber for me today too, as I learn of my friend losing her Dad to cancer this morning. My own Dad passed, from cancer, 5 1/2 years ago so I understand my own experience with mourning the loss of a parent. I’m trying to word that right because I know my feelings and experience aren’t the same as hers, and I’m trying to remember that and respect it.

But it definitely feels like there are far too many of us in the Club now…

Cristina: “There’s a club. The Dead Dads Club. And you can’t be in it until you’re in it. You can try to understand, you can sympathize. But until you feel that loss… My dad died when I was nine. George, I’m really sorry you had to join the club.”
George: “I… I don’t know how to exist in a world where my dad doesn’t.”
Cristina: “Yeah, that never really changes.”
~ Grey’s Anatomy, S3; E12 Six Days, Part 2

And onward to today’s photo….

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Happy Sunday Spoonies! See you tomorrow for day 6! ~ ❤ Xun

7 Days, 7 Photos; Day 4

Happy Saturday! I love Saturday. It’s my favorite day of the week! I can be lazy and snuggle back under the covers just a little longer, or we can choose to go do something fun on a family adventure. Renn Fest season just ended for us and we always try to go at least twice during the 8 or 9 weekend run.

Movie nights, museum visits, trips up to The Kennedy Center. Saturdays usually have something good!

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See you tomorrow for day 5! ❤ ~ xun

7 Days, 7 Photos; Day 3

Happy Friday!

It’s day 3 of the 7 Days, 7 Black & White Photos Challenge and today I’m choosing a picture I took last week for one reason, but I’m posting it today for another reason. The rules say No explanations, so I’ll just leave you with the image and hope you are inspired!

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Gentle hugs and see you tomorrow! ❤ ~ Xun

7 days, 7 Photos; Day 2

Hello Spoonies! It’s day 2 of the 7 Days of Back & White Photos challenge. The only rules are: No people. No explanation. I’ll be posting one black and white photo from my life everyday for 5 more days after today.  If you would like to participate, please leave a comment and let me know so I can go check out your pictures too!

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Happy Thursday! See you tomorrow! ❤ ~ Xun

7 Days, 7 Photos; Day 1

Happy Hump day!

Some of my favorite bloggers are participating in the Seven Days, Seven Black & White Photos of Your Life challenge and I decided to participate after seeing Lisa’s (Life of an El Paso Woman) posts for the last couple of days. She invited readers and bloggers to participate so I thought it’d be fun! The only rules are: No people. No explanation. I’ll be posting one black and white photo from my life everyday for the next 7 days. If you would like to participate, I know I’d love to see your photos!

Day 1:

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See you tomorrow!

❤ ~ Xun

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?

The Next Thing

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.

EXCEPT~~~~~~~~~~~~

My youngest daughter starts high school tomorrow and I haven’t quite figured out if and/or how much Imma freak OUT.

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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