Saturday, April 14, 2018

Time Does Not Stand Still ...

So, I'm watching the documentary "Time Stands Still."  I've always thought of myself as a Rush fan but after watching this, I realize that I've been wrong.   I don't have a room with filing cabinets full of Rush clippings and tickets.  I haven't been to see them 132 times.  I don't own a closet full of Rush t-shirts.  I think the last one I bought was on the "Roll the Bones" tour and wore it until it was in rags. But despite that well-worn tee, I definitely don't own an 8 track of 2012.   I guess I must be a poseur ...

Fan status aside, this documentary has made me think of a theory that I've had for awhile.

We are the first generation seeing our rock idols grow old. 

Okay ... okay ... not just my generation specifically.  Some of our parents are watching their favorite musicians grow old and die.   They spent the late 60's and 70's listening to The Rolling Stones and CCR and The Who other famous bands that I won't mention.  My mother loved Elvis Presley ... and she watched him evolve from a handsome young man to a Las Vegas side show to a corpse.

But Elvis, while still The King, doesn't really strike me as rock.   An argument was made to me once that our grandparents watched big band leaders die ... and Chubby Checker and Chuck Berry ... and so on and so on. 

But I'm not talking about Pat Boone and Eddie Fischer.  I'm talking about The Who and the Stones and Led Zeppelin and KISS and, hell yes, Rush.  It's the end of an era.   We're watching these golden gods of rock and roll age.   These musicians, who were eligible years ago to move into senior living facilities, are still getting up on stage and putting it all out there.

And watching Time Stands Still, you see how hard that is for them.  As we age, the physical demands of playing that kind of music take a toll on the body ... and tours become grueling marathons.  Supposedly the R40 tour will be Rush's last.  And, unlike KISS, their claim seems genuine.  Several bands have made this declaration ... the Eagles' Hell Freezes Over tour, for example.  But most of them wind up back on stage.  Whether for their overwhelming love of the music ... or their need for the cheers and adulation ... or maybe just for the money?  Who knows.

But we're watching an era fade away.   Growing up, I remember being so excited to hear the summer tours coming through ... getting tickets for everything I could afford.   Aerosmith and Rush and Night Ranger and KISS ... and then Poison and Motley Crue and Warrant and Mr. Big.   So much music ... so many concert tickets.  And everything I love has gotten old ... ... ... just like me.

The first group I remember being utterly fascinated with was Van Halen.  Their song 1984 came out and the video was everywhere.  So I started going back and listening to their older albums and was in love with David Lee Roth.  I believe the lyrics "I reached down between my legs ... and eased the seat back ..." caused an egg to drop and triggered my first period.  But ... time marches forward ... and over the years, Eddie Van Halen, guitar god, has had a hip replacement, tongue cancer, and surgery for diverticulitis.   Nothing shouts "cool" like hip replacement and poop issues.

I'm not judging.  I know it sounds like I am ... but I swear I'm not.  I have a picture of me when I'm about 23.  I'm sitting cross legged on the floor ... gloriously big hair ... balancing an empty beer pitcher on my head and laughing uncontrollably.   I love that picture.  Its not classy.  At ALL.  But it captures this wild youth that I used to be ... parties every weekend ... friends and laughter and music.

But I'm not that person any more.  I wouldn't want that life any more.  Let's be honest ... that life, while fun at the time, is fucking exhausting.  And when you're young that's fine.  But there comes a point when you age out of that ... and you want something different.   So watching the documentary today, I can see why a musician, at 64, would not want to head out on the road again.  It has to be an unnerving decision.

So here we are ... getting older each day.   We're losing our parents ... we're losing our friends ... and we're losing our music idols.   There's nothing sweet bout this ... it's all bitter.   But I guess it's life ... and it's the way all of this works.   Bottom line?  Next time you have a chance to go see one of your favorite bands?  Go.   Because Keith Richards can't last forever, people.   Have you seen Robert Plant???  Jesus Christ!  Go.  Now.

Time stand still
I'm not looking back
But I want to look around me now
Time stands still
See more of the people
And the places that surround me now 
Rush - Time Stands Still

Monday, February 26, 2018

Take Care Of Yourself, Kevin ...

So about a year ago, I came up with this AMAZING idea. 

Some charitable organizations have been doing these raffles ... pay $5 for a chance to go to dinner with Kristen Bell ... or pay $5 for a chance to have a walk-on roll in Star Wars.  Whatever.  I thought that was an awesome idea.  Instead of auctioning off these events to the highest (read richest) bidder, let everyone have a chance at it by using the raffle system.

So my idea was ... offer a raffle with the chance to watch your favorite movie with your favorite director.  How many people would buy a ticket to watch Star Wars with Lucas?  Or to watch Close Encounters with Spielberg?   Or Goodfellas with Scorsese?   Or Pulp Fiction with Tarantino???  You could raise millions with this idea!

So I told this to Stoney ... all breathless and excited ... because my raffle choice would be Chasing Amy with Kevin Smith.

He looked at me a little puzzled.  I snapped back at him, "What?  Can you imagine getting to sit and watch a movie with Kevin Smith and listen to him talk about different scenes and what happened with the actors and how the movie got made?!"

He calmly looked at me and said, "You do know that already exists, right?   You can do that right now for free.  It's called a commentary track.  I can play it for you ... right now ... any of Kevin's movies ... we own them all."  

Sigh ... he's my better half for a reason.

Well, fine.  What he said is true ... although not as exciting as sitting with him.  But I see Stoney's point.  Also, how many times does Tarantino want to talk about Pulp Fiction no matter how worthy the charity might be, right?

Anyhow, this morning, Stoney woke me up with the horrifying news that Kevin Smith had a massive heart attack last night.   He survived the "widow maker" and is already tweeting again.   But it's depressed the hell out of me. 

I'll say it again ... I want that raffle.  I want to put my money down on a chance to watch a Kevin Smith movie with Kevin Smith.  Hell, I'll even let him choose.  Yeah, I'd prefer Chasing Amy ... but throw a dart ... any of them would be a dream come true.

Take care of yourself, Kevin ... we need more movies, more Comic Book Men, and more Hollywood Babble On from you.  I parked at the back of my work parking lot today ... because I'm Kevin's age and not in any better shape.  I'll take care of me ... if you take care of you.   Let's do this, Kevin ...

Frustrated, Incorporated
Well I know just what you need
I might just have the thing
I know what you'd pay to see

Soul Asylum - Misery

Tuesday, February 20, 2018

Tuesdays With ThirtyWhat ...

I'm not sure what would be better.  Having no talent at all ... or having just a little.

I've always been slightly talented.  Enough to be able to impress people now and then ... if nothing else just from the act of being creative rather than the item created.  However, and this is a big however, I have a lazy temperament that was never really interested in developing the glint of talent I had into something truly impressive.

What I'm saying ... there's never been a moment where I've thought ... "THERE ... that is the best (insert item) ever made!  Let's see someone make one better than that."   Because they can.  And they have. 

There's a scene in the first Star Wars prequel ... yes, yes, the prequels are a load of shit but just go with me on this one ... and in the scene Qui-Gon Jinn says, "There's always a bigger fish."

For some reason that stuck with me.

It doesn't matter how talented you are ... or how creative you are ... there is always a bigger fish.

If you can draw?  Someone can draw better.  If you play an instrument?  Someone can play better.  If you can crochet?  Someone else can crochet better.   And once you wrap your head around that, it allows an alarming level of, "Fuck it" to enter your psyche.

I suppose there are people like Davinci out there ... people who are so talented that they're above the rest of us mere mortals.  You could argue that someone has to be the biggest fish ... but I would argue there always new fish being born and each one has the potential of being the next king of the hill.  It's a very nihilistic way to think.

There's always those legends, whether real or not, about the kid who heard to play a certain guitar piece and made himself learn it ... only to find out there were originally two guitarists playing it.  The stories are probably apocryphal but it's based in the idea that the young will always find a way to shit gloriously on the accomplishments of the past.

I guess the point of this post ... if I were to do things over again, I would work harder at honing a talent ... probably art ... but art or music or craft or cooking or something.   My grandmother could paint ... her sister was a talented artist but, again, didn't do anything with it ... my cousin is extremely talented but quit her design job because of the stress and opened a high-end cake decorating business. 

The odd thing is that my grandmother had me ... and I couldn't have children and the line stopped.  Her sister didn't have children and the line stopped.  My cousin didn't have children and the line stopped.  I think if we'd continued passing the gene on, we probably would've eventually had someone in the family who was genuinely gifted.  But our family tree is stunted and I'm not sure who will carry that particular gift on.

Who knows ... maybe I'll be like Grandma Moses.   At some point money won't be an issue any more, I'll start taking art classes, and I'll be a little grey haired old woman painting countless canvases of corgi butts.  It's a nice thought ...

Starry starry night
Flaming flo'rs that brightly blaze
Swirling clouds in violet haze reflect in
Vincent's eyes of China blue.
Colors changing hue
Morning fields of amber grain
Weathered faces lined in pain
Are soothed beneath the artist's
Loving hand.

Don McLean - Vincent

Monday, February 19, 2018

Facebook Fatigue ...

"Is it just me?" 

Normally this question is answered with a resounding, "Yes, it's just you, you weirdo."

But this time, I'm not sure.

Is it just me or has anyone else fallen out of love with Facebook?

I'm just not that ... into it anymore.

Ever since I joined Facebook eons ago, back when a college email was required to join ... and College One was assuring me how much easier a Facebook account would make my courses ... I have been, if not obsessed, then enthralled with Facebook.   I genuinely loved seeing everyone's updates ... even the most banal, "Look at this grilled cheese I made!" was met with instant thumbs up.   I loved seeing everyone's photos ... oh my God, their baby has gotten so big ... oh my God, look at their new puppy!   It was just this odd voyeuristic window into everyone's lives.   I loved looking through that window and I equally loved putting life's little moments out there to share.

To be fair, I'm fairly old so no ... I'm not an Instagram person who loves taking photos of every dinner I eat and taking selfies in my car with aviator sunglasses and a smoothie.   I've watched Nosedive and I don't think I've ever been that concerned with how many "likes" I've gotten or how many "friends" I have.   However, I will take a moment to be brutally honest and admit that I do adjust things and re-take pictures to get that "perfect look."  I've also threatened people (hello, girls ... hello, Stoney) with, "If you post that photo, I swear to God, ..." 

So yes, I'm vain ... but I'm old enough and fat enough to have a healthy dose of "Go fuck yourself" to go with that vanity.

But now ... more and more, I'm just over it.  I'm assuming ... hoping ... it's just a phase.  At some point, I'll feel like dialing back into the opinions of everyone I know ... but for the moment, I don't care.  It's like a switch flipped at some point recently and I just cannot see another sunset.  Yes, I'm talking to you ... stop it.  We've told you that your photos are beautiful literally dozens of times ... it's a sunset.  Almost identical to every other sunset photo that you've posted.  Just. Stop. It. 

(Note:  The above person does not read my blog ... is not aware of my blog ... and were they aware of my blog, would not be self aware enough to realize that this is a reference to them.  They are too busy taking unlimited photos of the sunset and tagging those photos with a terribly unfortunate business name.)

I noticed this new aversion to Facebook this weekend.  Sometime on Saturday, my brother in law saw some adorable cookie cutters online and tagged me in them.  They were adorable and I commented on his post with a lighthearted joke suggesting I bring cookies to Thanksgiving this year.  Fast forward to sometime yesterday afternoon and I got an email telling me I had a comment waiting for me.  Facebook only sends you emails when you are lazy and don't check Facebook often enough.   The email alerted me that my mother-in-law had written something nice about the cookie cutters as well.   And that's when it hit me ... I hadn't read Facebook all day.   Hadn't opened it.   Hadn't liked anything.  Hadn't cared.

So I opened the app and read her comments and then took a minute to browse.  More baby pictures.  More sunsets.  Ugh ...

I'm sure this too will pass and I will once again want to share everything.   But for right now, I just don't.  I think maybe Jason Isbell is right ... when you're happy, you don't want to write.  You just want to keep doing what makes you happy.

All I ever wanted
All I ever needed
Is here in my arms
Words are very unnecessary
They can only do harm

Depeche Mode - Enjoy the Silence

Thursday, February 08, 2018

Just One Of Those Days ...

You ever have one of those days?  Just ... ugh ... one of those days?

I shouldn't complain because I am blessed beyond belief and anything I complain about can be waived away by a mumbled #FirstWorldProblems.  But still ... a gnat may just be a gnat but it's still an irritating little fuck, right?

I usually wake up groggy but I always come to as Stoney and I watch the morning news and cuddle.  Not this morning.  This morning I could not wake up.  I struggled to swim to the surface and yet the undertow just kept pulling me back down. 

I finally got up to get ready for work ... running extremely late since my ass was permanently attached to the mattress.  And weighed myself to find I'd gained a pound.  The fuck?   I didn't eat anything more or less than the day before.  It's not like I was expecting to have lost anything ... but a pound?  Ugh ... fuck that noise.

I continued hurrying ... throwing on clothes and running out the door ... when the garage wouldn't close.  It would roll down 1/3rd of the way and stop.  It would roll down 1/4th of the way and then stop.  I finally walked back up to the garage and found one of the sensors just slightly askew.  I fixed while my hands were shaking in the cold ... and finally it closed.  Ugh.

Then came work and our weekly team meeting that is, as usual, torture to sit through.  There's nothing wrong with my employers or co-workers ... but they've grouped my small team together with another team.   So each week I sit there for sixty minutes listening to another team debating minutia that doesn't remotely affect me.

I know.  I know.  I'm just cranky.   Overall ... I'm just tired and cranky.    I want to go take a hot shower, put on some fresh cuddle duds, and relax with Stoney.   It's not like anything catastrophic has happened ... but I'm ready for this day to be over.

Oh and hey ... did I mention every moment this weekend from Friday night through Sunday will once again be filled with "to do" items instead of just having one goddamn day to unwind???

I know ... I know.  Dial it back, ThirtyWhat.  Extra pound or not, I need some emergency chocolate.   This is what emergency chocolate was designed for.

Its just one of those days
Where you don't want to wake up
Everything is fucked
Everybody sucks
You don't really know why
But you want to justify
Rippin' someone's head off
No human contact
And if you interact
Your life is on contract
Your best bet is to stay away motherfucker
It's just one of those days

Limp Bizkit - Break Stuff

Friday, February 02, 2018

It's Dark and Hell Is Hot ...

So yesterday I wrote a blog post.  

"What?" You say. "I see no blog post from yesterday, ThirtyWhat!"

No, you don't.   Because I didn't publish it.   Despite finishing the whole thing complete with graphic at the top and lyric at the bottom, I didn't hit that publish button. 

Primarily because I'm a coward.

We live in a fucked up time.  We're in the darkest timeline.    We have a leader previously best known from his reality television series and currently best known for his fondness for late-night tweets and terrifying proclivity for poking unstable leaders of nuclear-armed nations.  I don't care if you like him.  Any rational person would read his "little rocket man" tweets, hear about the erroneous missile alert in Hawaii, and feel a twinge of actual dread in the pit of their stomach.

So yeah ... there's our shared nightmare each night when watching the evening news.

But there's more.  So much more.

And the thing is ... I feel like, as a country, we've developed this tendency to take any issue, either good or bad, and ride that horse as hard and fast as possible until it fall over dead frothing from the mouth.  Every issue, no matter how good or well intentioned, must be lovingly obsessed over until we've created a filmy bubble that will inevitably burst all over us in a spectacular spray of fatigue.

Let's take the whole #MeToo thing.

I wrote a blog post yesterday about an incident that happened to me when I was in my early 20's.  Essentially, the point of the post was that while we should obviously teach men to read facial and body cues and basically just not be sexually aggressive monsters ... we should also be teaching young women to not just say no ... but to make a goddamn scene.  To be a bad ass ... to wield a flaming sword of fury and say, "I SAID NO!"

This post was more about my unwillingness to make waves back then ... not about victim blaming others or even myself.

And yet ... I see dozens of articles where women are immediately turning on one another when someone in the herd doesn't give the desired call and response.   And while I basically have no readers anymore, the last thing I need is an inbox full of vitriol for what is just a nagging thought I've been having.

And while that may still happen, I do have one thing I want to say.   The whole sexual assault backlash is necessary and good.   Too many women have had to keep their silence about men, whether powerful or not, who deserved to have their dirty laundry aired. 

But as I said above, this culture has a nasty habit of creating bubbles around whatever bone on which we're all chewing.  And when this breaks ... once we've spent day after day after day after day of hearing, "This famous man assaulted me" ... "This famous man pulled his penis out" ... "This famous man grabbed my breast ..." ... how long before the fatigue sets in and we start sighing and saying, "Of course he did."

I don't have an answer how to fix that problem.  I don't have any answers, in fact.  

On a personal level, I'm lucky.  My life is blissfully happy.  I deal with little blips on the radar ... but overall, my world is a happy, safe place. 

But out there?  It's a mad world.

And I find it kinda funny
I find it kinda sad
The dreams in which I'm dying
Are the best I've ever had
I find it hard to tell you
I find it hard to take
When people run in circles
It's a very very
Mad world
 Mad world

Tears for Fears - Mad World

Friday, January 19, 2018

When Time's the Currency of Life ...

Alright, so this one is morbid and depressing.  But since this is an outlet for what's in my head?  Here's where it has to go ... sorry.  Feel free to keep on clicking to the next site.  The next post will be better, I promise.

So ... when I was on dialysis, the nurses told us that the five year survival rate on dialysis is 60%.  But I looked it up myself.   From the National Institute of Diabetes and Digestive and Kidney Diseases, the five year survival rate for dialysis patients is 35.8%.  That's less than half.   That number hit me so hard at the time.   Here I'd found someone who was amazing ... and my chance of spending more than five years with him was less than 50/50.

It hit me hard enough that I talked to a good friends of ours about it.  We were going to dinner before seeing a concert, and I told her what I'd found out.  She looked shocked ... but tried to say it didn't matter that it would all be alright.   I told her people on dialysis don't die of kidney failure.  They die of heart attack or stroke ... and those happen suddenly.  You can't plan for them.  So I made her promise that if something did happen to me, that she would take care of Stoney.  I know eventually we all have to get through hard times on our own ... but I wanted her to make sure in the beginning he wasn't alone.

So I wound up getting a kidney, as I've proudly announced here.   And, FYI, the five year survival rate for transplant?  85.5%.   That number is so comforting ... and I've stopped having panic attacks thinking about how I need to write letters to my loved ones and get Stoney on my car title and get a will drawn up.  I've become a little more zen about the whole situation.  But, let's be honest, it's easy to be zen when you aren't being stuck with needles three times a week. 

So anyhow ... fast forward to now.   Have you heard of Jason Isbell?   He's this amazingly talented song writer.   The first song of his I ever fell in love with was Goddamn Lonely Love.   It's just heartbreakingly beautiful.   And while I could fill a canyon with compliments on him and his music ... here's what you need to know.  Whether consciously or subconsciously, his songs are filled with misery.   He wrote a song called Elephant that I heard around the time that my cousin was dying of cancer.  That song, while amazing, was like a punch in the gut.

Then came If We Were Vampires ...

Sounds like a fun name, right?  It's not.  It's so soul crushingly depressing that this may be the thing that finally makes me say, "I'm out."
If we were vampires and death was a joke
We'd go out on the sidewalk and smoke
Laugh at all the lovers and their plans
I wouldn't feel the need to hold your hand
Maybe time running out is a gift
I'll work hard 'til the end of my shift
And give you every second I can find
And hope it isn't me who's left behind

It's knowing that this can't go on forever
Likely one of us will have to spend some days alone
Maybe we'll get forty years together
But one day I'll be gone
Or one day you'll be gone

So I have tears in my eyes just copying those lyrics.  Maybe it's different for other people ... we all know we're going to die someday.   But knowing that your clock is running a little faster than others ... it makes this song torture.

I'm not telling anyone not to listen to it.   In fact, please go check Jason Isbell out if you haven't.  He has some beautiful songs (including the one above) ... listen to Goddamn Lonely Love and Traveling Alone and Flying Over Water and Cover Me Up.   It's all good.  I can't honestly name a single song I don't like ... except for the one above.  Because it's just too much ... because neither option is good.  I don't want to be the one left behind ... but I know what it feels like to worry about leaving him behind.

I got green and I got blues
And everyday there's a little less difference between the two
I belly-up and disappear
Well I ain't really drowning 'cause I see the beach from here
And I could take a Greyhound home but when I got there it'd be gone
Along with everything a home is made up of
So I'll take two of what you're having and I'll take all of what you got
To kill this goddamn lonely, goddamn lonely love

Jason Isbell (Drive-By-Truckers - Goddamn Lonely Love

Wednesday, January 17, 2018

Unknown Wizarding World Movies ... Part 1

So, have you ever wondered if other movies might be part of the Harry Potter universe???   There have been scenes in movies that made no sense.   But they would if the characters lived in the wizarding world!

Let's take a look ...

Grease - So, at the end of the movie, Danny and Sandy are in a car that suddenly flies off into space ... as if gravity itself has ceased to exist in a bubble around these 40 year old "teenagers."  This makes no sense ...

Unless ...

That car is an enchanted car like the one owned by Mr. Weasley, the Flying Ford Anglia!   Let's watch that scene again ... Sandy looks surprised.  So I think we can safely assume she's a muggle.  But Danny?  THINK ABOUT IT.  Danny is a hood.  He can't understand sports ... can't play baseball, can't play football, generally wants to beat the shit out of anyone in his general vicinity.  SLYTHERIN anyone???   Let's not forget about how Sandy's attractive boyfriend "accidentally" trips while running hurdles on the school track.  Confundus charm perhaps?  Anyhow, so Danny and his friends "fix" his car.  Fast forward to the end of the movie, and this former rusted-out piece of shit shoots off into the sky, and Danny looks over his shoulder gives a sly grin.  Oh yeah, he knows.  All he has to do is avoid the Whomping Willow and he's gonna get laid.  Um ... that is what the movies about, right?  Getting laid?  Wait, was that was just me?  Ah-hem ... forgeticus!

The Happening - Okay, first let's all embrace the suck and admit this movie is ... well ... not good.   So, if you haven't seen it (good for you!), the concept of this film is that all of a sudden, plants all over the world are starting to defend themselves by randomly releasing an invisible neurotoxin that causes humans who inhale it to violently commit suicide.  Mark Wahlberg and Zooey Deschanel make the nonsensical decision to leave the city (where there would be less plants) and run to the country (where there will be nothing but plants as far as the eye can fucking see.)  The premise of this entire movie makes no goddamned sense ...

Unless ... 

This movie takes place in the world of "Harry Potter and the Half Blood Prince."  At this point in the timeline, the Death Eaters were wreaking havoc in both the muggle and wizarding worlds.  But the muggles would have no idea why these things were happening.  Death Eaters are going around randomly causing muggles to throw themselves off buildings or drive their cars into trees.  They're a bunch of dicks!  This is totally something they would do!  By the way, this theory also explains why this is movie is so mindbogglingly boring!  We're subconsciously waiting for Voldemort to appear ... but that moment never comes. 

(Side Note:  I also believe that movie is a dark, depressing statement about how tedious and dismal our muggle lives are ... always reacting to the random things that happen around us while living in a dark, meaningless void and never getting any closure as to why these things are happening.  Something to think about ... if my theory is true, this means M. Night Shyamalan is fully aware of the wizarding world.  However, since the majority of his movies suck, I assume he's a squib.)

Eraserhead - This movie makes no sense; however, it has nothing to do with the wizarding world.  I'm relatively sure this was conceived, written, and filmed all while tripping balls on LSD.

Birdman - DUH!  Okay, I don't even have to write a preface for this.  It's obvious.  An actor, who is mentally ill and haunted by his previous roll as Birdman, hears voices, hallucinates, and is increasingly upset with the failure of his life.  He eventually commits suicide by jumping out a window and his daughter is ... happy?   Which, come the fuck on, makes no sense!

Unless ...

Birdman is an ex-Death Eater wizard who has exiled himself to the United States to escape Voldemort ... and the pressure of the Dark Lord's return is slowingly driving him mad.  Think about it ... Birdman destroys his dressing room with the power of his mind.  Birdman shoots himself in the face, and doesn't come close to dying.   Still don't believe he's a wizard?  At the end of the movie, after shooting himself in the face, he gets out of his hospital bed and flies the fuck away

(Side Note:  Emma Stone is also a witch in this movie.  No, there's no proof of it.  But I love her and she's cool and would obviously be an awesome witch.  Call me, Emma ... let's get some cheese fries and hang out.)

 Raven hair and ruby lips
Sparks fly from her finger tips
Echoed voices in the night
She's a restless spirit on an endless flight
Wooo hooo witchy woman
See how high she flies
Woo hoo witchy woman
She got the moon
In her eye

Eagles - Witchy Woman

Monday, January 15, 2018

A Wonderful Weekend ... Derailed By the Hangries ...

So, after my surgery in September, the nurse talked to me extensively about the medication I would need to take post-transplant.  Each morning, I take twelve pills ... each evening I take around seven.   I can tell you the names and purpose of each one ... some I can even tell you the dosage.  Eventually, they will wean me down off of most (or some) of those drugs ... but three of them I will take for the life of my new kidney.

Those drugs are Mycophenolate, Tacrolimus, and Prednisone.   Mycophenolate and Tacrolimus are both immune suppressants that keep my immune system from attacking the new kidney.  Prenisone?  Well, everyone knows what Prenisone is, right?

In one of my clinic visits after the surgery, the nurse sat me down and said, "You know how there's a freshman fifteen?"  "Yes, of course."  "Well, there's also a transplant twenty.  It's going to happen.  You will gain twenty pounds.  Expect it.  Prednisone is hard on your body and it will cause mood swings and insomnia and exhaustion and weight gain."

Mood swings?   Maybe.  I was definitely crabby yesterday which could either be Prenisone or the fact that I was super tired for some weird reason.  Insomnia.  Definitely in the beginning.  After the surgery, it would be impossible to sleep.  I would wander the house ... watch television ... read a book.  Whatever.  Anything to kill time until I finally collapsed into unconsciousness.  Now that they've lowered the dose, that problem is much, much better.

Now the weight gain?   Okay, first, I haven't had any weight gain yet.  I'm four months out and I'm actually about two pounds less than I was before the surgery.   I've been three or four pounds lower than this even ... and it was a glorious number to see on the scale ... but that was during the flu outbreak when I didn't eat anything but crackers for three days ... so we're not going to count that glorious number.

I have had what I call Prenisone moments.  Moments where food is like gravity ... a constant, mind-numbing, pulling sensation that draws you to anything edible.  When I was on a large dose of Prenisone right after the surgery, this happened almost daily.  Usually after my Mom left and before Stoney got home ... or during those insomnia moments when I would wander through the house like a homeless, chubby ghost.

But I found that if I made an effort to recognize that moment.  "This is NOT real.  This is JUST the Prednisone."  That seemed to help.  But that wasn't all.  The second step was to tell myself, "You can have ANYTHING you want.  But you have to decide WHAT you want.   You can't just graze ... you have to pick ONE thing."  So usually I'd spend an hour or so wandering in and out of the kitchen.  Opening the fridge.  Closing the fridge.  Opening the cabinets.  Closing the cabinets.  Then finally deciding a box of animal crackers was the ONE GODDAMN THING I WANTED.  And nine out of ten times I was happy.

So I've avoided the transplant twenty so far.  Then yesterday happened.

I can't explain it.  I don't have an excuse.  I woke up exhausted.  I mean utterly exhausted.  I haven't felt that way in a long time.   Maybe it's because we went to the Hoogland Arts Center on Friday night and stayed out late?  I just don't know.  But I was exhausted and cranky.   Everything irritated me.  I wanted to do three things ... eat, sleep, and generally be left alone.

Stoney made homemade skillet queso dip.  Which I ate.  Stoney made homemade bread.  Which I ate.  Stoney made homemade beef vegetable soup.  Which I ate.  I ate pretzels and cream cheese.  And a sandwich.  And some random cheese.  And I drank milk.  ALL THE MILK.  And I ate leftover Christmas candy.  Like a random box of Nerds that was laying around on the kitchen table.  And more bread.  With butter.  And then I drank some of Stoney's grape drink.

It was around 6:00 that it hit me.  I realized that I was having a Prednisone moment.  Fuck that ... I was having a Prednisone DAY.   At that point, I had NO idea how many calories I'd consumed but it was in the high four figures.   Around 7:30, Stoney said he was going to get up and get a snack and asked if I wanted anything.  I explained that something was going on ... and that I had to stop with the binging.   He was so helpful.  He even stopped me from getting up about 8:45 and making one of those coffee cup microwave cake things ... because I had a soul crushing desire for cake.  But we held that monster back.

I woke up and was only about a half pound heavier than the day before.  I weigh myself daily because of the whole new kidney/urine output thing ... so I expected a change.   At least I didn't break the scale ... which I was fully expecting.  Today wasn't as bad.  I think because I recognized the issue.  I've totally been in control today ... at least so far.

I'm sorry to Stoney for being such a grouch yesterday.  I was tired and I was abnormally and constantly hangry ... but no excuses.  I love you and you're an amazing partner.   Thank you for the wonderful weekend and for date night and for a dinner out and a show at the Hoogland.  And of course thank you for making homemade bread and homemade queso and homemade beef vegetable soup!   It was delicious ... no ragrats!  (Well, not many ...)

Ah, but when that clock strikes midnight
And I'm all by myself
I work that combination
On my secret hideaway shelf
And I pull out some Fritos corn chips
Dr Pepper and an ole Moon Pie
Then I sit back in glorious expectation
Of a genuine junk food high

Larry Groce - Junk Food Junkie

Friday, January 05, 2018

Swear Jar Specifics ...

My husband, who is a very well spoken man, has decided, with several of his co-workers, to stop cursing as a New Year's Resolution.   They created a swear jar at work and drop a quarter in the jar every time they let a piece of profanity fly.   We just talked about it last night ... what exactly constitutes profanity?

Sure, there's the obvious choices.  George Carlin's "Seven Words You Can't Say on TV" is a good place to start.  But it gets sketchy from there.   I got home from work, stretched out on the floor, and began quizzing Stoney about what would trigger a contribution to the swear jar.

Me:  Shit?
Him:  Yup
Me:   Hell?
Him:  Yup
Me:  Wait ... Hell?
Him:  Yup
Me:  As in ... hell, no!
Him:  Yup
Me:  Well, that's fucking stupid.
Him:  Are you being ironic?
Me:  Fuck, no!

(I'm a smart ass, obviously.   The conversation continued.)

Me:  But what about other swear words?
Him:  Like what?
Me:   Blowjob
Him:  Blowjob?
Me:   Blowjob
Him:  What POSSIBLE conversation would we have
where the word blow job would come up in an office setting?
Me:   Hahaha ... come up ... (snort)

I love our adult conversations ...

You're standin' to close what the fuck's with you
You ain't my old lady and you ain't a tattoo
No need to whimper no need to shout
This party s over so get the fuck out
Get the fuck out

Skid Row - Get the Fuck Out

Friday, December 29, 2017

An Embarrassment of Riches ...

It's that time of year.  The time of year when we all make New Year's resolutions ... and then inevitably throw our hands up in submission by March of the following year.

For years, I refused to participate in them.  I railed against them here and here and here and, would you believe, for the very first time back in 2005, here.

So, I guess we could sit and dissect what it meant about my mental or emotional state for all those years that I wasn't even willing to entertain the idea of resolutions.  But that ship has long sailed and I would rather think about the way things are now.   I'd rather think about what it says that I'm thinking positively about the future ... about what positive changes I could make in the next year.

Next year, my big resolution is regarding my health.  I want to have my native kidneys removed.  Since my transplanted kidney is flourishing and my native kidneys are enormous and painful, I want nothing more than to have them gone.  The surgeon said he would remove them after a year and I quickly told him that he would be seeing me. 

But we realistically have to look at the big picture.

As my kidneys have gotten larger (and larger and larger), they've pressed against everything.  The issue with Polycystic Kidney Disease patients is that your body begins to depend less on your core muscles and more on the actual kidneys themselves to hold up your body.  It weakens your spine and stomach muscles.  So ... if the crux of native kidney removal is to eliminate pain ... pain itself may not be fixed by removing the native kidneys.   Yes, the pain from breaking cysts and the pushing against nerves and other organs will be gone ... but at that point you'll have pain from your spine and stomach muscles having to work for the first time in decades.

So what's the solution?

Start working on your core muscles so they're at least a little stronger before you have the surgery.  Again, this is tricky.   PKD patients are very susceptible to hernias and you have to be careful not to overly strain the stomach muscles.   But hey ... we have to start somewhere.  I think yoga would be the best place to start.  I'd need to find an easy, beginner class ... but I think it's a good first step.

I also want to build up to using our exercise bicycle regularly.   I'm sure in the beginning I couldn't do it for long ... but I think I could build up stamina in time.  Again ... we have to start somewhere, right?  Especially if the end goal is to get these monsters out of my body.

On a fun side ... I want to see one movie a month with Stoney at the theatre.   That resolution is hard because there isn't always a "must see" movie ... but hey ... we'll just have to get creative.  I'm also going to try to read one book a month.  I love to read ... but the stack of books on our headboard is getting enormous.  I've started each one of them and then got a new book and started the cycle again.  Gotta fix that!

It's almost here ... a brand new year.   A new kidney ... a new life without dialysis ... and a new year with my new husband.   I'm not sure what else I could ask for ...

We drank a toast to innocence
We drank a toast to time
And reliving in our eloquence
Another auld lang syne

Dan Fogelberg - Same Old Lang Syne 

Thursday, December 28, 2017

Happy Birthday, Stoney!

Happy Birthday to my wonderful husband, Stoney!

You're my best friend, my lover, my confidant, and my cookie. You're everything I could ever wish for in a partner ... and there's not a single day I wake up and not be thankful that I get to spend another day with you.

I love you more than you'll ever know!   Happy birthday and many, many, many more!

Hope I didn't spoil your birthday
I'm not acting like a lady
So I'll close this note to you with good luck and wishes too
Happy, happy birthday, baby

Dale and Grace - Happy, Happy Birthday Baby

Wednesday, December 27, 2017

How I Wound Up Crying On Christmas ...

As Donkey, on "Shrek the Halls" always says, "Christmas ain't Christmas until somebody's crying."

Christmas is an emotionally stressful time for me.  I could go into the reasons why ... it started back when I was a teenager and continued on ever since.   But it doesn't really matter why.   What matters is that I dread each and every holiday of the year and have reoccurring nightmares specifically about Christmas.

These nightmares usually involve me realizing that it's Christmas Eve (or a birthday or anniversary) and I realize that I don't have any presents.  So I'm driving around trying to find something special for someone.  I inevitably find myself at Walgreens or Lowe's ... looking at bandaids or plumbing supplies ... in a cold sweat because I know I'm about to ruin Christmas.

I am not lying, people ... I have these dreams before every single holiday.

Before Easter I'm dreaming that I've forgotten to buy a ham and everyone is coming over.   Before Thanksgiving, I've lost the turkey.   Before St. Patrick's Day, I've forgotten to buy any corned beef.   I'm telling you ... it's either presents or food.   Before a holiday, I'm panicking about one of those two things.

In the case of this year, I had my transplant at the end of September and was on short term disability for six weeks.  I'm blessed that my work offers short term disability insurance so I didn't go completely without income.  But you do have to go one week without pay before the 70% rule kicks in.   My first "whole" paycheck was the second week of December.   I had bought a handful of things in November ... but still ... I was at a constant, low grade panic for most of November and December.

Still, by the time it was over, I think I did a fair job.   No one had an opulent Christmas this year.   But I was able to get the girls each one gift card and one smaller present.   My mom got the one item she specifically wanted.   Stoney mainly got games and a book ... oh, and some clothes but only because he gave me his Kohl's points.  Let's not lie to ourselves ... that means he bought himself clothes ... but he was kind enough to be gracious about the situation.

I tried to tell myself that what I pulled together was enough.  It would have to be, right?  Years and years ago, when my family was low on money and short on food, my great grandmother used to tell my grandmother, "Don't worry, Milly ... they'll stop eating when they hit plate."  So I told myself, "Don't worry, Thirty ... they'll stop unwrapping when they hit carpet."

And things went well.  At least I felt like things went well.  I felt guilty about the Kohl's points thing ... but aside from that, I felt pretty calm about the situation.   We had our Christmas with the girls and they were all kind about their gifts ... I'd told them ahead of time this wasn't a great year ... and no one acted disappointed.  (Thank you for that, by the way.)   Mom loved hers ... which I wasn't worried about since she'd only wanted one thing and received that one thing.  I mean, it's hard to miss the bullseye with that kind of request.

Christmas morning, Stoney woke me up and we opened our stockings and our presents.  His gifts to me were obviously nicer ... I mean, the gifts in my stocking were worth more than what I gave him all together.  But again, I thought it was alright.   When it was all over, he went in the kitchen to make breakfast and asked me to put a couple boxes down in the basement for safe keeping.

When I opened the basement door, I saw something in the shadows.  I turned the light on ... and there was a wrapped gift ... along with another beautiful stocking.   I picked them up and took them to the living room with Stoney following.   There was a card in the stocking that said, "From Santa to Jackie Kidney - Ho Ho Ho!"   My hands were shaking when I opened everything.   There were gift cards to my two favorite restaurants ... with a note that said, "Dear Jackie - Now you can take Stoney and Thirty out to dinner!  Merry Christmas, Love, Santa!"

I went over to hug Stoney and started crying.   The whole kidney transplant thing is still such a big thing to me.   I don't know that I've processed it all fully ... it really is a lot to think about.   My whole family recognized Jackie this year ... she was listed on our Christmas cards ... both from and to us ... we talked about her at every get together ... College One gave me a little sculpture of Jackie complete with pill box hat, pearls, and sunglasses ... and Stoney's family even talked about her celebrating her first Christmas.   So to find Stoney had made a stocking for her ... that was the cherry on a happiness sundae that I could no longer contain.

He stood their and hugged me while I blubbered.  

It doesn't matter how long I live ... I won't be able to do anything that special for him.

I wish I could tell my donor's husband how loved his gift was ... how much his wife is thought of and appreciated.   Maybe we'll meet him this year ... I'm friends with her friends and it's been discussed.   I haven't reached out because it's only been three months ... and this is his first Christmas without his wife.  No matter how happy I am, I'm sure he is still grieving.

In any case ... Christmas must be Christmas ... because someone was crying.   But in our house, they were tears of happiness.

I see your smilin' face
Like I never seen before
Even though I love ya madly
It seems I love you more
And little cards you give me
Will touch my heart for sure
All these things and more, darling
That's what Christmas means to me my love

Stevie Wonder - What Christmas Means To Me

Monday, December 18, 2017

Life's Little Lessons

It's a little over a month since my last post.  Nothing tragic or catastrophic has happened ... although I will admit that I've learned a lesson.

When you are first transplanted, the team drills into your head all the precautions you should take to keep your new organ safe.   You don't put fresh flowers in your home.   You don't eat off of buffets or from open, shared food.   You avoid public places.  You don't hug. 

Anyone who knows me will realize that last one was hard for me ...

But in the beginning, I was cautious.  I wore my mask when out.   I made sure to use a sanitizing wipe on shopping carts.  I kept my distance from anyone with so much as a sniffle.  I was very aware of my surroundings and that I needed to be as careful as possible since I was on immune suppressants.

But it's easy to get complacent ... and I did.   I didn't wear my mask anymore and I started to take my health for granted.  In just under three months, I started thinking my immune system was just fine.  Sure, it was "suppressed" ... but I was woman.  Hear me roar!

And so, I didn't bat an eye when we went to Stoney's work Christmas party.  I didn't bat an eye when I hugged a dozen or more people.  I didn't bat an eye when I made a plate with all the delicious holiday food.  It was a fabulous night and we both had a lot of fun.

Until 48 hours later on Friday afternoon ... when I developed a fever.   Poor Stoney ... happy holiday, huh?   All our Christmas plans and schemes fell apart as I laid in a stupor of NyQuil and Benadryl.  By Sunday morning, my fever was high enough that we couldn't wait any longer.  He drove me to the ER and I tested positive for Influenza A. 

Tests showed my kidney was doing fine ... other than some dehydration.  They gave me Tamiflu and said at best I would have a couple days of high fevers and sickness ... but overall it lasted 5-10 days.  Stoney took such wonderful care of me ... even working from home that Monday when my fever was around 102.  And they were right on the timing ... even after the fever and aches went away, I then immediately switched to vomiting and diarrhea for several days more.

This weekend I was finally well enough to have the girls over for our Christmas celebration.  We had a great day ... and joked about being happily surprised that everyone got together in the same room while still in the month of December!

It was a small bump in the road ... but last week was a sober reminder that it's only been a few months.  It seems like I've had Jackie Kidney forever ... but she's still new.   So I'll be better about my mask and using hand sanitizer ... and I'll probably miss Christmas Eve mass this year.   But it's a small price to pay for a life changing gift.

I wanna jump, but I'm afraid I'll fall
I wanna holler, but the joint's too small
Young man rhythm's got a hold of me, too
I got the rockin' pneumonia and the boogie woogie flu 

Johnny Rivers - Rockin' Pneumonia

Monday, November 13, 2017

Why Didn't I Drive Myself?

I took a lot of wrong roads to get me to where I am today.   I must've made the right turn at some point ... because I'm with someone who makes me smile every day ... someone I love with all my heart and soul.  I wish I could go back and change some of the stupid decisions I made.  But if those decisions brought me to the man who kisses me every morning ... and loves me, despite my innumerable flaws?  Then I'll take those bad decisions ... because they got me here.

So, in the spirit of Mike Judge's "Tales from Tour Bus" ... I give you ...

Tales from ThirtyWhat - Episode One:  Why Didn't I Drive Myself???

In my early 20's, I dated a man who was older than me.  Not crazy older ... eight years, I think?  Maybe ten.  Who knows ... and it doesn't really matter.   For some weird reason, I decided this was the guy.  Maybe because he was older?  I don't know.  We make stupid decisions when we're young.

I excused so much bad behavior ... because he was the guy.   His mom loved me ... I mean she loved me.  She'd call me and ask for Christmas present suggestions ... always ask him to bring me down with him when he came to visit ... requests that, in retrospect, must've really pissed him off.  

There were numerous red flags that I willfully ignored.  Mind games that were outright cruel.

For instance, he asked me to look at houses with him.   This baffled me.  Our relationship was on again/off again ... him breaking it off every few months whenever he said it felt we were "getting too serious."  So I was, understandably, confused at this invitation.  I asked him, "Why would you bring me along?  Why ask my opinion?"  He casually said, "Shouldn't you should have a say in where you're going to live."  Cue starry eyes.  I believed him.  What can I say?  I'm an idiot.

We easily toured at least a dozen properties ... and finally found one that clicked.  A big two story home in a neighborhood close to the park we always walked in.   It had so much natural woodwork and a big old-fashioned kitchen.  It even had a pool with a gorgeous deck.  He said something along the lines of, "I can see you here."  I believed him.  What can I say?  I really am an idiot.

But within a few days, hell, maybe within a few hours, he was backing off once again ... acting distant.  Our phone calls became less frequent ... our walks in the park sporadic.  I knew he was still talking to the realtor, so I finally told him on the phone, "Do me a favor.  Don't buy that house."  When he asked why, I said, "Because that's my house ... and if I'm not going to be in that house with you, I don't want you to get it."   He quietly said, "You're right ... that is your house."

Not only did he not buy it, he immediately stopped looking at houses all together.
Now, a normal, sane person would look at the situation, recognize the enormous statement this made and say fuck this shit.
Not me.

Why start now ... when there was a hundred different times I should've said fuck this. 

Like when he offered to buy me a whole new wardrobe if I lost weight.  Or when he took his sister on a vacation to the Bahamas and when I asked why he didn't ask me to go, his answer was, "I didn't think you'd feel comfortable on a beach."

But the straw that broke the camel's back was a trip to a music festival up in Milwaukee.   We met three of his friends in Chicago and drove up to the festival for the weekend.  It should've been so much fun.  Instead, he drank non-stop until he heckled Rob Schneider, threw up uncontrollably, and blacked out naked in the hotel bathroom.  We were sharing a room with his best friend, Mark.   Mark looked at me sadly and said, "I love him like a brother ... but you deserve better than this." 

And he was right.

The next morning, I went to the roof of the hotel and sat by the pool studying for a class I was taking.  He came up a couple hours later and apologized ... profusely.  I told him I was taking a train back to Illinois ... and that we were done.  He said he understood ... but that he would drive me home.  Couldn't I just spend one more day with him there?  I think his exact words were, "Don't embarrass me in front of my friends."  Even then, I remember thinking, "Passing out naked in front of the toilet ... so that Mark had to straddle you to piss?  That wasn't embarrassing?" 

But instead I said alright ... and I spent an awkward day with the guys, walking around the glorious city of Milwaukee, and continually asking myself ... why didn't I drive myself?"

And I wouldn't change a thing
I'd walk right back through the rain
Back to every broken heart
On the day that it was breaking
And I'd relive all the years
And be thankful for the tears
I've cried with every stumbled step
That led to you and got me here
Right here

Rascal Flats - Here

Saturday, November 04, 2017

A Modern Day Warrior Mean Mean Stride ...

So, we're a few days over six weeks from the kidney transplant ... and, so far, Jackie Kidney and I are both doing amazingly well

My creatinine level is holding steady at 1.4.  My immune suppressant levels have now reached what they think is "maximum absorption" ... and at this point, we'll slowly lower the dose of Tacrolimus over the next six months to a year.  My nephrologist says to remember that there is always a chance of rejection.   Even though, at six weeks, I feel like a new person ... there's always a chance of sickness or rejection.  Don't take chances.  Don't eat deli meat ... don't eat under cooked meat ...  never eat grapefruit.  You just don't take chances whether it's next month or next year.

The day to day things ... wow.  I wish I could my donor's husband and kids what their gift did for me.  I will tell you first that dialysis made things better.  Before hemodialysis, I was sleeping in my car at lunch, I was crawling through the week just so I could sleep 12 hours on the weekends, and I was also take 3 hour naps Saturday and Sunday.   Dialysis did make things better.

But ... having said that?

The last few months before my transplant had gotten bad.  Stoney did almost everything as far as the house went.  He loaded the dishwasher ... he emptied it.  He did the wash ... he dried it ... he folded it.  He made dinner ... he cleaned up.   Until I was outside of it, I didn't realize how bad things had gotten.  By the way, I'm so sorry, hon.  Thank you for everything you've done.  I'll make it up to you ... value added every single day! 

Now?   I can't describe all the change!  I'm doing the dishes ... I'm doing the laundry ... I'm folding clothes as soon as they're dry instead of running it through 3 or 4 cycles just so I don't have to mess with it.  I'm making dinner ... and looking new things up on Pinterest to try.  By the way?  Homemade au gratin potatoes are delicious.   Take that Betty Crocker!

Things aren't perfect ... but my only real complaint at the moment is that I'm having sleep issues.  Large doses of medication will do that to you ... especially long-term Prednisone.  Monday my Prednisone dose drops again ... this time down to the dose I'll keep for the rest of my life (or Jackie's life) ... so hopefully that will help.  Last night, I couldn't go to sleep until almost 1:30 a.m.  Not a HUGE issues for a Friday night/Saturday morning.  But a CATASTROPHIC issue next Monday when I start back to work full time.

I don't really have an answer for that ... other than to take a swig of Z-Quil about 8:00 every night.  But I suppose I'll do what needs to be done.  As far as the house and things go ... it's not like I have this overwhelming amount of energy ... although I do have more energy.  It's just this feeling of normalcy.   I bought frozen bread dough last week so I could make some "fresh" bread.  It was alright ... but today, I looked up a simple rustic country bread recipe to see how hard it would be to make actual fresh bread.  I can't really explain it ... other than this little voice in my head that is saying, "Let's DO this."

At the moment, my eyes are heavy.  Running all day on six hours of sleep is the culprit this time.  Before, if I'd fallen asleep at 1:30 a.m., I would've woken up around noon.  Now?  The medicine alarm on my phone goes off at 8 a.m. come rain or shine ... and happy or sad, awake or asleep, I'm getting up, taking my temp, blood pressure, and weight ... and taking those 12 pills.

There were several times over the last couple years, that I've broken down with Stoney and said, "I don't want to do this."  I said it before my fistula surgery ... I said it before my *second* fistula surgery ... I said it before I went to dialysis ... more than once.  And it wasn't a joke ... I didn't want to do those things.   I can honestly say, I haven't thought that once so far.   When my alarm goes off twice a day ... it's Rush's Tom Sawyer, by the way ... I don't think, "I don't want to do this."

I think ... "Let's do this."

And that's why birds do it
Bees do it
Even educated fleas do it
Let's do it
Let's fall in love
Cold Cape Cod clams
'Gainst their wish, do it
Even lazy jellyfish do it
Let's do it
Let's fall in love

Cole Porter - Let's Do It

Wednesday, October 18, 2017

Introducing ...

Exactly four weeks ago today, I got a second chance at life.  I received the most precious gift anyone can give you ... I received a kidney.   I've named her ... please say hello to Jacqueline Bouvier Kidney.  Jackie to her friends ...

Four weeks ago on a Tuesday, Stoney woke up to a text from one of my friends.  One of her best friends had a cardiac incident which left her on life support.  This person's husband decided to donate her organs ... so the Gift of Home representatives came to talk with them.  Before opening it up to the public, Gift of Hope gave her family the choice of designating someone to be tested.  Her family said they didn't know anyone ... but my friend was there.  She said, "Wait ... I know someone."  She texted us to ask if we were interested and Stoney sent back all my information.

We talked about it ... and approached it more as being grateful that someone thought of me.  After all, what's the chance of being a match with a perfect stranger, right?   And with that, Stoney and I got dressed and went to work.  I felt wistful ... nice to be remembered ... but a little sad that this would be another "close but no cigar" type of situation.

The Transplant Team called me around eleven and verified that I was the family's designated choice for testing.  They were starting the process.  The donor would be kept on life support for 24 hours while testing was done and things were set into motion.  They would call me but it would be several hours.   At five they called to say our blood types matched and that we were moving onto the next step ... antibody testing.  They see if your blood reacts to the donor's blood ... again, several hours worth of testing.  They told me to go to bed and relax.  We were cautiously optimistic ... but again, this was a long shot.

At four a.m., they called.  I was a match and was invited to meet them at the hospital.  This was happening.  They told us to take our time.  They were still getting things in motion but they were calling the ER and telling them to expect me.   Stoney took a shower ... I got my hospital bag ready and got dressed.  I called mom.  We all headed to the hospital ... and began the wait.

The Transplant Team brings you in early ... but it takes hours.   We were there around five a.m. ... they were starting the harvesting process at ten ... and my surgery was scheduled at two.  Nothing to eat or drink ... we all just sat in my room, watched tv, and waited.   My aunt came and waited with us ... and finally the time came.  We all went down to pre-op.

I'm not going to lie ... at this point, I was still privately thinking ... something is going to go wrong.  Either the kidney wouldn't be viable ... or at the last minute they would find my antibodies were reacting.  Something.  So as they wheeled me into the OR, I still wasn't sure that this was really happening.

But it happened!

I have a healthy kidney now.   My creatinine was over 8 before the surgery ... I'm now at 1.3.   I have no signs of rejection and they took my staples out last Friday.   If everything stays strong, I'll go back to work on November 1st.   Half days to begin with ... then full days after a week.  I'm tired but excited ... Jackie is strong and fierce and amazing!

I guess my only issue, at the moment, is fluid.  I went from strict fluid restrictions on dialysis to being told to drink a minimum of 2 liters per day.   That is insane.  Worse, my body doesn't want fluid.  Before on restrictions, I was always thirsty.  Now, drinking is difficult.  When I drink too fast, I feel like I'm choking.  I drink 4 oz per hour to fit in the 2 liters ... and even at that small amount, I feel bloated and "sloshing."  They say it will get better ... and I hope it will.

You may have also heard that people's taste change with an organ transplant.  And oddly enough, it's true.   I was addicted to soda.  I loved Cherry Coke with every fiber of my being.  When they told me cola was out due to the phosphorus, I switched to Mug Root Beer and drank it with wild abandon.  Now?  Soda is undrinkable.  It's too sweet ... and has an odd, bitter taste.  Stoney drinks a "Crystal-Lite" type of drink which I used to think was AWFUL.  Now?  It's tasty.

Overall, sweet things are FAR too sweet.  Splenda doesn't bother me any more ... so I am drinking Hint water.  Propel is too sweet but I can cut it with water.  Food ... sigh.  I used to love toasted ravioli ... it's alright but it has an odd taste as well.  Some of this may just be a post-operative kind of thing ... and it may change.  But the team says some of this may be permanent.  Our tastes change after transplant ... and soda just may be something I never want.  Who would ever thought that could happen?

Normally, the Wish for Hope people want the donors and recipients to stay separate.  No contact until they approve and mediate it.  But in this case, because of the way it came about, things were ... different.  We knew her name ... her family knows mine.   Things were posted on Facebook with both sides tagged.  I trusted Stoney to look her up on Facebook and tell me a little about her.  

After surgery, alone by myself one night in the hospital, I looked her up myself.  My donor's name was Connie ... she was a beautiful soul.  Everyone was so sad on Facebook ... commenting on how happy and loving she was.  She was a mother with a brand new grandbaby.   She was only a couple years older than me.  She had a beautiful smile.  She was an amazing cook ... which I hope rubs off on me.  She was full of love and joy ... and I feel so blessed that she lives on in me.

Her husband wants to meet us once I've recovered ... and it's the least I can do.  It's odd how many connections we have.  My aunt (my uncle's wife) is distantly related to Connie's family.  I work with a woman who is very involved in her church ... and her woman's group has several people who were good friend's of Connie's.   My co-worker texts me every week before their small group and I give her an update on how we're doing ... and assure them I'm doing everything to keep this kidney strong and healthy.  One of Stoney's co-workers went to school with her ... and he gives her updates as well.

There are down sides, of course.   Transplants require a lot of medication.  I take 12 pills every morning and about 8 every night.   That should go down in the months to come ... but there will always be a lot to take.   There are restrictions ... no buffets ... no deli meat ... nothing with grapefruit juice.   But these down sides are nothing compared to what I received.   No more dialysis ... no more needles ... no more horrible leg and foot cramps ... no more fluid restrictions ... no more binders before meals.

Most importantly, they've given me time with Stoney.  Yes, I have every night with him now instead of spending three evenings away from home at the clinic.  And that is beyond wonderful.  But the harsh truth is this ... the five year survival rate on dialysis is 60%.   That means forty percent of people don't survive five years.  Dialysis is hard on your heart ... hard on your other organs.   There's a reason you're instantly eligible for disability once you start dialysis ... it wears your body out.  Because of Connie's family's loving gift, I have a chance at a long life with Stoney ... and that's why we got married, after all.

My family is around me ... my Mom's taken such good care of me since I was home ... the girl are amazing and have visited and sent cards and texted ... all my aunts and uncles and cousins have been with us ... Stoney's family has sent flowers and called ... I feel loved and whole ... and more than a little tired.

It's time to rest again.  It's taken this long to have the energy to want to write this (loooong) post.  But I wanted to share ... and to encourage you all to sign up to be organ donors.  I know it's an unpleasant and difficult decision.  But please consider it ... you can give someone else a second chance at life.  It's the most amazing thing any of us can do ... or receive.

You came along just like a song
And brighten my day
Who would have believed 
That you were part of a dream
Now it all seems light years away
And now you know I can't smile without you
I can't smile without you
I can't laugh and I can't sing
I'm finding it hard to do anything
You see I feel sad when you're sad
I feel glad when you're glad
If you only knew what I'm going through
I just can't smile without you

Barry Manilow - Can't Smile Without You

Monday, September 18, 2017

Chicago Is Made For Lovers ...

Note:  I wrote this post last night during a dialysis session ... which I think may explain the "poor me" aspect of the story.  I'm sorry about that.  Unfortunately, it's all true ... but it is very much a pity party.   Some days are harder than others and I think we've discovered that when I get too tired (or overheated, etc.), I tend to get emotional.  Stoney deserves more credit than I can ever write here because he pushed himself to the limit this last month ... the whole roller coaster transplant thing, walking long distances to get the car up in Chicago, staying up late driving while I slept, etc.  So thank you again, hon.  You really are the "better" in the term "better half."  And now, back to our story. 

Do you know someone with a chronic disease?  You might ... and might not even know.  A lot of us look normal.  We look "relatively" healthy.  I wish I had a dollar for every time someone said, "But you don't LOOK sick!"

So, last weekend, we planned a trip to Chicago.  It wasn't anything heroic.  Stoney drove us to Joliet after my dialysis on Friday and we stayed at a nice hotel right off the highway.  The next morning, we visited Shedd Aquarium ... which is stunningly beautiful, by the way, if you haven't been.  I didn't touch the stingrays ... #NeverForget ... but, even still, the exhibits are gorgeous.

After a nice relaxing walk through the aquarium, we went to Portillos for lunch.  It was Stoney's first time ... and I think he enjoyed it.  Their Italian Beef is sooooooo delicious.  I've tried to watch what I eat because of the transplant list situation. But I'm not going to lie.  I was a little pig!  Other than the little piece I gave Stoney to try, I ate my entire sandwich ... and I would've licked the paper if we still weren't in the honeymoon stage. Hell, give me a couple more weeks of wedded bliss and I'll eat mine, his, and anyone else's in arm's reach!

With full bellies, we drove over to Miniature Moose's work to surprise her. Hah! Jokes on us ... she had the day off.  So I texted her a photo of her coworker selling us popcorn ... and we were off to the big event.  Cubs and Cards at Wrigley Field!   And who got the biggest surprise?  She was already at the park with her mom and aunt!  She came and found us and sat with us the first half of the game.  Stoney bought me frozen lemonade ... and Mini Moose shared it with me while the three of us cheered the Cubs.

Okay now.  Whoa.  Let's stop right there.   That's just not true.  My love is a Cards fan ... so he was a good sport ... sitting patiently while everyone around him lost their minds.  He deserves tickets to Busch Stadium as a reward for that kind of self control.

So ... that's what everyone knows.

What everyone doesn't know is that I fell apart.  Just that stuff up there?  That took more spoons than I had. Walking around Shedd's was perfectly fine (although we still had to sit and rest) ... but there was no way I could walk from the parking garage to Wrigley Field.  Stoney dropped me off and then walked by himself to find me in front of the gates.  There's no shade on Addison ... so by the time he got to me, I was overheated.

See, our kidneys regulate a lot of things besides urine.   Temperature, for example.  I was so very hot ... and exhausted.  Stoney got me to our seats and then went to the first aid station and got a cooling pack.  He got us water and frozen lemonade to cool my body down.  I tried to be as normal as I could in front of Mini Moose, but Stoney could tell things weren't right.  My legs buckled during the national anthem ... so I just leaned against Stoney and prayed the guy would just STOP singing.  And after Mini Moose went back to sit with her mom, I just leaned my head on Stoney's shoulder and tried to think cool thoughts.  Every once in a while there was a breeze and it was Heaven.

Stoney offered to leave just before the seventh inning stretch.   I'm aware that I should've said no.  I shouldn't have been so selfish ... it was his weekend too.  But I wanted to sit in our air conditioned car SO bad.  So I said yes and we headed out ... but we were in the same spot as before.  The parking garage was so far away.  So we walked as far as the police station ... just to get away from the Wrigley crowds.  Stoney sat me on bench just outside the precinct door with a fresh bottle of water and went to get the car and pick me up.

And as soon as he was gone, I started crying.  There was this heartbreaking combination of guilt for ruining the trip ... of frustration for not being able to do something as simple as walking to our car ... and sadness that I couldn't push any farther.  I sat there crying ... looking like a clinically depressed hobo.  And it hit me ...  "Pull yourself together.  You're outside a police station.  Someone is going to see you.  This is going to become a thing.  Stop it now."

And so I got it together.  Stoney picked me up and we headed out of town.  And I was relatively alright until we stopped for dinner at a McDonald's south of Joliet.  We were having a snack and talking about the day ... and I lost it all over again.  This time it was just the overwhelming guilt that NORMAL people can do this.  That Stoney was changing all this stuff because I couldn't make my body do what I wanted.

And here is where I tell you how great my husband is.  Not one single time did he say stop that ... or don't cry ... he just came to my side of the booth and held me.  He let me sob into his Cards jersey.  He said he knew it was frustrating ... but that it was alright.  He talked to me about the transplant team ... and how someday we could do it all.

And we sat together in a McDonald's booth outside of Joliet ... holding each other and ignoring everyone else around us.  He made me feel better ... like he always does.  I STILL feel guilty for not being able to be like everyone else.  I probably need therapy at this point.  But we had a good time when I wasn't a mess. And when I DO get that transplant, I'll make it up to him.

Portillo's is on me, hon ...

Six and three is nine
Nine and nine is eighteen
Look there brother baby
And see what I've seen

Baby don't you wanna go
Back to that same old place
Sweet home Chicago

Blues Brothers - Sweet Home Chicago

Thursday, September 14, 2017

Mellon Collie and the Infinite Sadness ...

So, just a little over a week ago, I got "the call."   Well ... not at first.  The transplant team called me on Tuesday the 5th around noon to tell me I was, once again, the backup.  Which was fine.  I didn't have a tingle ... nothing telling me that my life was about to change.  So I agreed to not eat or drink anything ... and I just kept on working.

On the drive home, they called back.  The surgeon wanted to talk to us.  He explained where the kidney was coming from ... a 19 year old girl.  He explained why it was available ... tragic car accident.  He explained that it was high risk kidney ... the "capsule" had been removed around it.   At the end of the call, he invited me to come to the hospital and meet with them.

And so we did.

At six o'clock pm, Stoney, my mom, and me all met at the hospital ER and let them know I was there for a transplant.  We told a few people ... mainly bosses and necessary co-workers.  We didn't want to leave anyone out ... but there's no guarantee that this was going to happen.  It's a long process.  It's a really long process.  They took us upstairs to my room and the tests began.  A chest-x-ray ... an EKG ... 15 vials of blood ... endless questions.  We sat there for almost four hours going through the hoops.   We met the surgeon and he was a pretty awesome guy.  He just sat down and relaxed ... and just talked to us.  We really liked him ... he seemed to really like us. 

And then it looked like it was going to happen.  Like it was really going to happen.

We put it on Facebook.  I got phone calls ... I talked to the girls ... more texts went out ... phone calls to various family members were made.  And at a little after 10:00, I said goodbye to my mom and Stoney ... and they wheeled me out the door and down to a prep room for the OR.  I can't describe the overwhelming amount of adrenaline that was going through me.  I was sitting alone in a wheel chair in the OR hallway ... pushing myself back and forth with my feet ... making a circle from one end of the hall to the other ... humming some song.  I must've looked maniacal.

They finally took me into the prep room and the anesthesiologist came in and placed my IV.  She gave me my first dose of anti-nausea medicine and was getting the "relaxation" shot ready.  That's when the word came back ... everyone hold up.   The surgeon was examining the kidney.   The nurses were overly cheerful and told me this was "completely normal."  They assured me that the surgeon always did this and things would begin shortly.  The anesthesiologist left.  No one had to tell me ... that was a bad sign.

The surgeon came in to tell me something horrible had happened.  Whoever harvested the organ had damaged it almost beyond repair.   He drew me a picture ... showing me the way the kidney SHOULD have arrived versus the way it HAD arrived.   It put a hand on my shoulder and told me was going back into the OR to try and make it usable.  Out in the hallway, I overheard a nurse nervously ask him if she should get my family.   He told her yes ... he didn't want me alone.   No one had to tell me ... that was also a bad sign.

And so Stoney and mom came in and I repeated what he'd told me ... unfortunately, without the aid of helpful drawings.   They hugged me and he we sat and waited.  And we waited.  And we waited.  And we waited.

Mom nervously talked.  Stoney held my hand.  The surgeon worked for two hours in the OR.  And when he finally came in, he looked utterly heartbroken.  He took out his drawing and showed everyone all over again.   Everything is fuzzy ... but I believe he told us, "I'm a surgeon and my hubris wants me to tell you I can do this.  I can make this work."  I told him whatever he thought was right ... I told him I trusted him. 

My mom spoke up.   She asked, "If you had a daughter, would you give her this organ?"

My surgeon paused paused.  He paused for a long time.  And, as Stoney says, that pause said it all.  When he finally spoke, he asked if dialysis was working for me.  Was I doing alright?  I said I was ... and he said, "I can put this kidney in ... but it has a two to five times greater risk of clotting.  If that happens, it's deadly and it has to come out.  Then we're starting this all over with you in a much weaker state."   By that time, it was after two o'clock ... and we called it. 

It was over.

They took me back upstairs to take out my IV and put my discharge papers together.  I probably owe everyone an apologize ... Stoney, Mom, and any nurse who saw me on the 5th Floor.  It was the middle of the night.  I hadn't had anything to eat or drink since noon.  My blood sugar was low ... I was exhausted ... and I just couldn't anymore.  We walked back out to the parking lot together.  A sad trio ... not talking much.  Stoney offered to buy me something from Hardees since they're open 24 hours ... he even offered just to get me a root beer.   But all I wanted was to go home.

I don't remember anything after that.  I don't remember getting home or walking in the door.  I don't remember getting undressed or texting my boss that I wouldn't be in.  All I remember is holding it together until I could crawl into bed ... and then just falling apart.  Stoney held me and rocked me and said every single thing I would want him to say ... and, in retrospect, he had to be hurting almost as bad as me.  It was a horrible night for everyone.   He was up for hours ... he didn't have dinner ... and, even if it had worked, he wouldn't have had a new kidney.  He was running on empty just as much as me.

But we held each other ... and you can only cry so much.  Eventually, around 3:30 in the morning, we just fell asleep.   And when I woke up, I was every bit as depressed as I was when we left the hospital.   We'd both taken the day off work ... which was good since I didn't even wake up until eleven o'clock.  I couldn't bear to get on Facebook.  I didn't even look at my text messages.  It didn't matter whether they were congratulations or messages of sympathy, I couldn't bear any of it.   So Stoney was my rock ... he talked to everyone.  His family ... my family ... our friends ... everyone.  He was social when I couldn't be.

Stoney offered to make something to eat ... and I asked if he would just take me to IHOP.   I got dressed.  I had bacon.  Which helped a little.  And as soon as we went home, I went back to bed.    I don't remember the rest of that day or night.  I don't know what I said to anyone or what I did.   I think I ignored everyone.

And so it's a little over a week later.  The melancholy has passed.   I think I'm back to the old me?   I'm going around making up stupid songs for everything I do so ... that's got to be a good sign.  

But now I'm dreading the next call.  I don't know whether I could go through that all again.  I don't want to go through all that again.  It's not just a matter of being the backup.   It was being outside the OR ... steps away from a new kidney ... and having that just pulled out from under you.  It's a horrible feeling.  I don't know if I've ever experienced anything like it.

But I guess when it's meant to be it will be.  That's what we tell ourselves, right?  

I'm not alone ... I've got the best person on the planet standing right next to me.  Everything's gonna be alright ... 

She feels safe now in this bar on Fairfax
And from the stage I can tell that
She can't let go and she can't relax
And just before she hangs her head to cry
I sing to her a lullaby
I sing
Everything's gonna be all right
Rockabye, rockabye
Everything's gonna be all right
Rockabye, rockabye
Shawn Mullins - Lullaby Lyrics