Counting All Blessings

Our little tradition of meeting for Wine Wednesday at the LBYC is now in full force.  I missed it last week for my over packing mania for Cabo wabo.  Last night we'd be lucky enough to gather around that big ol' table and smile down at our college kiddo's.  The standard eye roll as I asked them to gather for a picture.  Of course they're not at that sentimental stage in life, where they really don't know how awesome these pictures are to look back on one day.  Gathered because of friendships and love.  Sunsets, good wine, and hugs.

Smiling across the table at eachother because life just seems a little sweeter. 

Summer 2016

 I'm sorry I didn't catch the bestest shot of my littlest birdie....but here they are-  with Kevin sporting his Cal Poly shirt because yesterday was the last day of high school for him.  Soon he'll embrace the changes in seasons and college.  Maria, you've done well mama.  You've done well.  Shit, we all have. 

Cheers to good kiddo's.  We miss you Roxanne.  Hope you're staying well in India, kicking ass like you do.  

Don't worry we've got your baby covered here.  Sidney, Kaitlyn, Madison, Kali, Cullen, Bianca, Kevin, and Darren.....you make us proud. Just missing Mac Dut!  Never look back you guys....keep pushing. And never stop. 

Meanwhile our other birdie was enjoying a night at the Angels game.  Where he was hit by a foul ball.

I thank God he's able to move on in life and enjoy this.  That foul ball just an Angel from heaven tapping him with reminders that "Every little thing is gonna be alright"-

And so, this is summer time. Hopefully the road is paved a tad bit smoother.  

So far, it looks like they're having fun!

Happy Thursday......

I wish you all a peaceful day, as we introduce our favorite day Friday into our lives tomorrow....

Hot weekend planned, make sure to keep your animals cool.  Love them, like they love you.

Lots of love,

This Mama Lisa

Digging Through Stacks.

For the last couple of months I've fallen guilty to major scramble brain.  There are days where I clear my desk, organize each stack neatly, arrange it to the other side and move on.  While other days I rummage neatly through my payable folder like a detailed librarian.  And then you have days where making my coffee and getting out the door is a win win situation for all.

Then you add another week of hospital stay, and vacation mind mode (where you kinda lose your mind before a trip and think you need that extra little bathing suit cover up and frantically think you need extra little bottles of anti-frizz hair spray, and travel size silly things, and you're a frugal mo-fo and buying high class in a hurry isn't your gig, so you're even more frantic HAHAHA) When in reality you are going for 2 full days, and just need a bathing suit.  And because of the wind....good tight black hair bands.  But I had a tiny can of hairspray for frizz. LOL!  

And red lipstick.  

I worked that red lipstick like a hooker.  When in doubt, put on heels and red lipstick.  haha-

Kidding. 

Well, not really, but I kinda chuckle at myself as I process through those days.  I'm far from the sexy type, dangit.

More like a stick-figure.

We had such a fun trip.  All the pictures are scattered between gadgets we carried.  

Today I worked extra hard on organizing my life here at work.  A place that is a second home to me.  A place that although hard to get to some days because of ....depression...and only God knows what I go through...it's a place that I have worked endless hours to sell fiberglass parts.  I deal with folks around the world.  I deal with employees, and they deal with me. Imagine their faces as I try to talk and not cry.  Awk.

Today I kind of feel like I'm beginning to grab the bull by the horns.  

Yesterday at our doctors appointment, it was clear that Kris is on his way to better.  He's suffering from GVHD in his mouth.  Some med changes, and blood work for his next visit. (They want to check levels of Philadelphia Chromosome) But as always, she's so happy on his outcome.  How far he's come.  She always hugs him tight.  Hugging me, and kissing my cheeks like an auntie would. LOVE-

Mentioning about maybe him getting back to work.  She's in no rush for him but offering if he's ready.  She also said he should take as much time, because he has the rest of his life to work. Adjusting his med sheet some more. 2 meds away, yet adding two more.  We always stare intently at the screen as I request to see counts.  I've mastered these pages at Kaiser.  I jot notes down like a reporter. I correct the doctor as I see necessary.  Kris quietly sitting on his phone figuring "mom's got it"- 

He's still a skinny boy.  But great counts.  His demeanor nervous, but content.  You have your mama and sister there for the field trip.  These appointments starting to feel more like a beginning to the end.  

We all left there yesterday "hangry"-  Jumping back on the freeway at 3, with completely empty bellies.  A brother and sister that were on the verge of grabbing each other in a wrestling move.  He wanted Fatburger.  She wanted a salad.  He wanted something quick.  She wanted to sit, and enjoy. 

I wanted no traffic, food and both of them out of my car, and freed from my eyes.  jk

Life is moving along finally. 

Work.

Hopeful for good health. 

For love to keep pushing me through. 

To try and lean away from the grief, and sadness.  To look for better days, filled with sunshine and laughter. 

Like our little quick weekend away.  

I'm learning to look out at the life we've worked so hard to enjoy.  To trust God. 

To perhaps steer away from the support groups I belong to, because lately I seem to become more frightened by the "what if's". 

I still cry every single day, and yet I try to not.  The kids laugh at me, and yet I try to laugh at myself too.  

The best medicine is to set your eyes on good times.  To look around and remind yourself what hard work deserves.  

 

The love of my life.....June 2016

 

Tomorrow is Kyoko and Erica's Birthday!  My wish to you both, is love, laughter and good food!

Happy Tuesday friends.....

Spread Kindness,

This Mama Lisa

Back To Reality, Filled With Love-

I bought two souvenirs in Cabo.  One, a wood Rosary.

The other, a wooden/metal sign.

The sign reads, "All You Need Is Love"-  

As we were leaving Cabo, I'd receive a text from Kali.  Informing of yet another attack.  

We pray so hard for humans to just live in good health. I mean, isn't that our hardest endeavor?

 To love eachother, without judgement.  And yet, the world doesn't always work out that way.  Same with health.  The impossible would be so perfect possible.

And yet, it doesn't work out that way.  What does work, is the enormous amount of LOVE that pulls together in the storms of life.  Donating blood, services, hugs, love, life. 

Evil can't win.  Love will always win, even when hearts are shattered.  And confused.

I have tons of pictures to share.

Instead of this Monday being about me. Or us.  Let's just spread love. And pray harder for peace in this world. 

The one thing breaking my heart the most- The last text to a family member, frantic, scared and hiding.  And gone.  No more replies.  Gone.

Tell those you love, you love.  Love hard kids.  

Most especially, tell your babies.  Often.  

Love is love. Humanity is humanity. Let your rainbow shine....

Reality.  Monday June 13, 2016- Happy 5th Month Kris!  

Today, we'll venture back to the doctors.  Labs, docs, X-Rays and answers- My list of questions, and answers--

 

 My wish for you is a good peaceful Monday.  Smile at a stranger.  You never know what is going on in their world-

This Mama Lisa

Had a blast with my lover.  We tend to tangle our souls into each other in travel.  And for that I am grateful.

Bill, thank you honey.  For loving me hard.  And always wiping away my silly tears, even in good times.

Because of love. 

Because of life. 

Because of LOVE. 

Thank you Jesus!  

He's still holding onto my wheel!

xoxo

Love Wins

Kristopher --- Jennifer 2015- Baja Mexico

"The Best Thing To Hold Onto In Life Is Eachother"

 

 

I hope you all have a super sweet weekend...

 

Remember to spread kindness, smiles and LOVE-

 

Never take tomorrow for granted-

Lisa Lynn

 

 

Best Times-Best Friends-Best Places

Maybe the tone for Summer Of Two Thousand Sixteen is set well for Kali....?

From what I can see, it's coming together pretty good.

Kali is lucky enough to roll with the high rollers.  Those high rollers so happen to be my friends.  And those high rollers take her to the finest at the finest.  From VIP at Stage Coach to concerts where she's tucked away in a suite. ThankyouverymuchRoxanne.....ThankyouverymuchShelly

.

Monday night she'd roll into a concert with her bestie Maddie- And...Shelly...Shelly the chaperone.

In true spoiled fashion.  

Welcome home Miss. Kali.  I hope this summer is good to you.  

But we might start planning that nanny job?

Buellllllerrrrr?????

Have a great Wednesday lovers.  Go spread peace.  And love.

This Warrior Mama Lisa-

Reset Buttons

One of the things I've noticed during this journey is post traumatic stress syndrome/symptoms- Whatever it's called, it's real.

It happens to him and it happens to me.  I never really paid too much attention in the beginning, because what was important at the time, was stem growth, and counts.  

Moving forward, and being a part of support groups, and forums, you soon figure out that things can happen in a split second.  One call.  One doctor visit.  One lab draw. 

And so, each time we've made our way back to lab/doc day, I see a pattern. The pattern seems unfair, yet familiar.  It's like walking into a dark alley at night.  I try to encourage and push him along as we load the familiar items into the car.  Puke bag. Mom bag. Water jug. Sweatshirt. Kris. Lisa.

Down the road we go, as I can feel his energy.  Most always feeling the same as me, only I am sure ten times worse. 

As we arrive, choosing a new parking lot, we'd try to make light of the surroundings and most important, of the day. I am by no means a Hollywood lover, so as I navigate every foot step making sure I don't step on spit, gum, or whatever lines the street of Sunset and Vermont. I am a freak, we all know that....so even parking creeps under my skin.  We also play dodge ball with the Church Of Scientology wierdo's that almost chase people down trying to hand them a flyer in their penguin looking tuxedos.  Women wearing the same.  

It's not even funny at that corner of Vermont & Sunset Blvd.  Children's Hospital a short distance from Kaiser keeping things in real perspective.  Mixed with transients, sadly, mentally ill. Mixed with penguin looking flyer slingin' folks, mixed with doctors, nurses, patients, families pulling their little totes behind them trying to grab the bus, as the bus omits that stench into the air.  There's a hustle feel there.

I guess that distraction is good.  As we walked into the elevator area, they were pulling a young lady out on a stretcher.  EMT with a bald girl in the fight.  We'd never know what was going on, just that it surely didn't look good, or peaceful.  All we could do is offer smiles.  Both jittery in our own groove.

Arriving just in time.  Our doctor on time, calling us back.

Her always loving demeanor the minute she sees him.  If there's one thing in this life, it's the love someone shows your child.  As a grown adult, I can see his dimple shine through as she literally hugs him and holds him exclaiming..."Oh my Kristopherrrrrr"-  How are you honey....and so so so much love.

Then a huge mama hug for me.  

We'd sit in the room with her for close to an hour.  Her love overfloweth.  Going over meds. The infection.  The hospital stay.  Her strong opinion to him that his mom made the best decision of having him transferred to Sunset.  He'd smile at her. Not really looking at me, because the wound is still new and fresh of that shitty stay.  He's healing. 

She'd start to load his counts.  One of the main reasons always for the visit.  

All recovered counts.  

Although he's almost 5 months old. (Inside) 

His platelets were at 38 at one point- Yesterday, 188

WBC 10.7

RBC 3.61

HGB 11.00

He only weighed in at 126 lbs.  Making him cringe.  The only noticeable difference I see, is him pulling his pants up the entire time we walk.  His belt at the last hole, and he doesn't want to pop another hole.

Can't blame him.

We'd leave her with more hugs.  A print out for me.  Future appointment with labs,and chest x-ray next week.  Along with a game plan.  She listens to me with meds.  It's something I can't describe, but my gut watches, and see's this pattern.  My concern of not being on chemo right now because it just scares me.  Yet the minute he gets on chemo his platelets drop.  And taste buds drop.  Meaning he won't eat again, and 126 lbs isn't good.  Yet my biggest concern is cancer coming back.  Yet her reply is he has GVHD.  And when a person is in this early phase of transplant and HAS GVHD- It's declaring the donor cells have taken on a war.  Although it's not easy, and causes lots of grief, it's a good thing.

For now. 

Later in life, it's not.  There's a difference in Acute, and Chronic. 

We'd decide to hold off for now.  Let him recover a little more.  Let his body take on some calories.  Along with nutrients. 

We'll start back up on chemo, and possibly more steroids.  Something he's strongly against. 

He's been off Sirulimus for over a week.  Good thing, his body isn't showing any signs of problems.

He has GVHD in the mouth, stomach (we think it's getting better)-

He had a pep in his step on the way out of there, down from that 8th floor, to the parking garage we'd go.  I can't explain or describe what it feels like to leave there with a good tone.  Answers, and love. 

As we pulled away and out of that structure, I rubbed his back.  Affirming that he's gonna get through it.  We both will.  That nightmare week was yet another part of this chapter.  Lessons learned, yet not worth digging up dirt.  It's life.  It's not something anyone deserved, or asked for. 

Thank God he's alive. Thank God he has a doctor that told him "we all watch you Kris" (meaning the transplant team)- Thank God he has a family that roots behind him.  And a Mom that albeit tired, and worn down, she's not willing to ever toss the towel in.  Thank God his stems are still trying hard to grow and take out the Kris cells.

Thank God he has insurance, and a Mom that continues to navigate through mounds of paperwork and disability forms.  

Thank God he has a dad that understands my need to go to appointments for answers.  Never declining my need to search for answers.  

Thank God for friends and family like you that offer him support while he's trying to get back in life.  And trying so hard to just live normal. 

Thank God for Jen that serves him like a king and loves him during the hard days.  Puke, shit, tears, and a skinny body.  She loves him.  

Thank God for her parents that love him every single day.

He will kill me with this picture, but comes to show you how exhausted and worked up he gets.

Solid traffic all.the.way.home....and when mom plays classical music....well.............

Today is a beautiful day. It's interesting when all is good in the world, how a mom can sit down for a breather and look around. 

Most always counting blessings.  

Even when I look at some bills that haven't been paid at home, simply because I forgot.  And so I mail them late.  Or a lawn and flowers that are thriving because I stop to make the time to keep that going.

I'm thankful. 

For today.

Much love to you all,

This Mama Lisa

ps.  Our weekend was full of peace.  Love. Happiness.

With our babies home, our friends stopping by unplanned, and yet turned out to be the best plan.

The First Man.

Today is my Dad's birthday.  

While driving to work this morning I was behind a "bob-tail" truck.  Funny thing, I stayed behind that truck, when normally I'd make my way around it, into the next lane.  I was floating back in time. Memories of the many days, hours and places my Dad spent in a similar truck.  My Dad was a hardworking construction guy.  He was far from a blue collar, white collar, or any collar for that matter.  He was forced to work while in high school.  Blossoming from a home filled with alcohol, and abuse.  A home filled with 3 boys and a sister.  He, being the oldest.  His childhood, and high school years, weren't the easiest.  In fact, they were at times, awful.  My mom and dad began dating in middle school.  During the recent visit with my mom, she reminded me of my dads hard days while in high school.  She witnessed pure heart break, and dysfunction.  His grandmother raising him.  He worked with his hands for years and years.  Never pushed through college, or a tradesman job.  He built hundreds and hundreds of pools for people to enjoy. 

Leaving southern California to join a mountain style life.  With my mom in tow in the late 80's. 

Learning a new life, without alcohol.  Falling off that wagon at times, but learning to pick up the pieces and moving on.  Without it. 

What he was left with, was guilt. 

Many many years of heartbreak stuck inside.  For what he put us through. 

The cycle in life. 

I reflect on those days often.  How his future life would be mingled with that pain.  As a child I never truly understood his sadness.  The sadness would never rear it's ugly head, until he drank.

This man has more love that flows through his veins than any man I've ever met.  He was a Coors fighter, and an herbal lover.  That man would fight through parties, weddings, camp sites, and local gigs.  Wishing people didn't cross his path on a bad day, or most important during a full moon.  He'd turn up any stereo louder than all those around him.  Music moves my dad.  As a matter of fact, it still does.  So much so, it's crossed into my blood line.  

He can play a guitar like a master.  Dabbling into the harmonica at times.  His outlet was always music.  

To this day, it flows through his blood.  When the going gets tough, he jams on his porch.  My mom, takes the treadmill.  Dad grabs his guitar. 

He's a wise man.  Who taught me more about life than he may even know.  He taught me to stand up for myself.  As a matter of fact, he's the one that taught me to never stop at the first answer.  If you're still in doubt, ask again.  And again if it's still not clear.

He taught me to be kind to all animals.  Big and small.  That man has nursed, and cared for any animal that would live in a mountain environment.  The most interesting to me, was a mama skunk and her young.  She trusting my dad.  I can totally see why.

My dad navigated through rough waters, and caused lots of rough rough waters for us. 

I was a rebel in high school, clearly understanding why now.

My mom tolerated so much.  

They set the example of "through better or worse"-  

Many of us, closed up shop and walked away.

My dad took my recent sadness and abandonment while in my shit storm, I'd pull away, holding resentment.

Although I'm into my late forties, I still wish I had the option of pulling into his driveway, for a hug.

For his wise, and yet stearn affirming tone. 

He always told me to be strong, especially during this chapter. 

It's not easy to be strong. 

He held us up as children, and yet we wouldn't even understand until years later. 

His grief, our grief, creating better things. 

A break in the cycle.

He's not even aware that because of what we endured, made me strong. Stronger. 

Independent. 

Loving. 

Kind.

Hard.

Able.

Because of you dad, and I'm not even sure you read my blog.  But because of you, I am a better person.

I will always cherish the life, even though at times hard.  I will cherish the moments you shared with us.  Camping.  Fishing. Surf side.  Making the best firepit.  Listening to you while camping at Red Rock, and we were back at camp because you embarrassed us.  You'd name all the stars in the sky the loudest, because of Coors.  Making bear noises.  And if we had a stronger mom she would have packed our shit up and left.  But we didn't because we knew the next day might bring sunshine, and hikes.  And your amazing famous breakfast scramble "goulaush"-  

Dad, I hope you read this someday.  You built me.  You gave me wings.  The biggest wings a warrior mom ever knew would grow.  I am my fathers daughter.  I look alot like mom, but I am you.

Music.  Kindness.  Animals. Strength.  No tolerance for bullshit. Love.  Smiles at strangers. The feeling to drink and drink, only now I've learned the pattern of that bad cycle, so I quit easier. 

I love life, and cherish little things as you taught us. 

I hope I can call and hear your voice for many many more years to come.

I always wait for you to call or need me to rescue you. 

Because your life wasn't always easy. And I think to let others finally love you the way you deserve is what will finalize these chapters for you.

I'm glad you have mom, and mom has you.  For that, I will always be grateful.

Always. 

Happy Birthday Dad. 

Thank God you aren't slingin' Coors and cigarette's, with the music too loud any more. 

Enjoy what you love.  At least for today.

Sure wish I could sit shot gun next to you...

Mom, Tina and Dad....1969

Love,

Your littlest #2 as you call me.   Or in some recent text'  LOL #2 (which interprets to you as Lots of Love child number two)  But really, in the techy world to me, and I laugh, is Lots of Laughs you littlest shit.  

Lisa Lynn

 

 ps- Today we head back to Le' Kaiser at Sunset....check up on the world of BMT, and counts.

Pray for us! Pray for him!

That Ticket

If you are ever unexpectedly handed that roller-coaster ticket I told you about, try to run.  Don't take it. 

But if you must, I thought I'd take a moment to guide you through my way.  Not that my way is the right way, or even a good way.  But my world is a better place if I can help. Anyone.  

So, lets back up to Sunday evening.  I figured it was a good idea to sort Kris' meds and create a large easy-to-read board for him, and most important whomever was helping him take the many meds he takes.

I'd make my last round to the pharmacy the week prior to make sure TWO trays were filled.  Just in case.

Just in case I slipped out of town, and never returned.  kidding.  Bill and I were slipping out of town...or so I thought.

 I spy--super ripe banana's--And if you wonder if those rotten banana's ever went to use....they didn't.  Tip-When my banana's get to that level, I peel em' and put in baggies and into freezer, making smoothie time so much more "fun"- Try it kids, try it.

Any way, I digress.  Here's a list from two weeks ago.  They've been adjusted since then.  Adding some, taking some. My goal, to begin my weaning process of hovering.

I'd also help finish clearing Kali's apartment.  Something she took by the horns, and had bags and bags ready to pick up.  The only thing Mom needed to do was take things to storage, and "sweep the carpet & floor because the vaccuum was gonerz"  

Monday....

And just like that, apartment two eighteen, a first and a last experience there.  Good ol' chapter pages.  A place that she had to adapt to co-existing with a room-mate that she fought hard to get along with, and vice versa.  Sharing a bathroom, food, hallways, and an adjoining wall.  

Chapters.  Memories.  Mostly good, sprinkled with some bad.  

Packed up and done. 

That night we'd continue settling in for a new week.  Washing laundry. Sorting bags without a dresser.  Deciding on what should of stayed in storage, and would she in fact, does need.

Then the phone call.

"Hey Mom, I think I have a fever"....

And fever he had.  Our night going down as the worst memories thus far.

He'd puke, and shit and puke and shit and be hooked to a heart monitor for the next week.  

Learning that he was septic, and infection ran wild through his already skinny body.  Pulling an all nighter with my crocs and comfy socks on just laying there watching him breath in the most scariest way.  I'd watch him take breaths like he'd just ran a marathon.   I'd start my newest journey introducing myself to calloused nurses and at times, confused doctors.  Catching myself schooling one doctor about Kris' meds one morning.  

Losing my shit more than ever.

Part of me resentful that I'd send off the rest of our family off to the lake, while I selfishly sat/laid bedside next to him.  Watching a heart monitor, and listening to the iv cart go round'n'round.  Watching the call light blink forever because he'd push it, and we'd be ignored.  Not for long though. 

A bun on top of my head so high it'd hurt by nights end.

Bags under my eyes and a makeup-less face for dayzzz.

The fight.

Something you wish you didn't have to contend with. 

But you know....

You have the ticket to the rollercoaster. 

And so you have no other choice.

Preach.  Pray.  Cry.  Holler. Argue. Resent. 

 

 Nag.  Quietly observe as I made the decision to have him moved to another Kaiser that specializes in transplant, or most important where his doctors are.  Wasn't the best and easiest choice.  That seventh floor was a shit hole.

It was most hurtful one day when he made a hurtful comment to me, and an argument ensued.  Both carrying validity to our beliefs.  One thing I'd agree.  He didn't ask for this assignment.  Infections happen. 

Later listening to his doctor explain the reasons why.  

I can perfectly remember on Saturday morning I would HAVE to make myself get out of my pj's to just get going.  My girlfriend leaving donut holes on my porch, sending me a text.  I'd get up, shower, and head to the nearest nursery to buy a flat of flowers.  Telling myself to get busy.  Praying as I removed each old flower, replacing with new.  Knowing he was at the hospital waiting for me. 

But the "Me", was on the verge on mentally breaking down.

I'd pack the bag I'd take.  New clothes, and new things.  Never over packing because I'm becoming all too familiar with the gig of stays there.  You don't need all that much.  

Going home just offers a shit load of stuff on top of the standard discharge stuff.

 I would bring his shaver because his arms were riddled with needle holes and tape was taking hair like an army.  Sitting quietly, watching him navigate through these pages.  

This hospital offering different things than the other.  But nothing will ever be perfect in a hospital.  One thing I thought was rad, was the camera (you can see it left of the tv monitor) that kept an eye on him, and his heart monitor changes.  Little extra comfort for me.  That commode where he shat' in all night, every night. Meshed with a mom that had to REMIND and make sure the CNA would CHANGE it, CLEAN it, and NOT REPLACE IT WITH THE OLD ONE.

 Remembering during his rounds of chemo, I'd decorate this board like a soccer mom would and add all kinds of love quotes.

Hmmm. 

This time, I'd remain vigilant.  Firm.  Loving, yet worn down.  I'd get food, and deliver whatever I needed.

I'd refrain from dwelling on the rest of our family in Havasu, trying not to have a pity-party looking at the fun pictures Bill, and Shelly sent.  I mean, Shelly worked her ass off, feeding 7 people, 8 including herself.  They went out to dinner, once. 

Imagine that.

She made breakfast, snacks and dinner. 

Bill drove the boat, managed household stuff, but nothing really in comparison to what takes place in sheltering 6, 20 year old college girls.  

His comments to me one evening on my drive home "Hun, this is alot of work"-

I can remember on Friday night, leaving that hospital garage, it was dark (something I hate to be is out and about without Bill at night in my car)- I pulled onto the 101, then 5, then 710.  An old punk rock song came on, and later I'd see that I was going 87 mpg.  

I slowed my horses down, and began to cry.  I cried all the way to my driveway.  

Alllllllthewayhome....hahaha.   (These little piggies went to NOT the market LOL)

I continued to cry into my house.  On my couch.  Next to Bucksie (grand-doggo) and finally showered.

What I realized was maybe this path was meant for me.  Maybe through these life lessons I can help others.

Maybe it's because I can navigate through medicines, and hospitals like a pro.  

Maybe it's because......

Just because.

I can share a few lessons, if by chance you are handed this rollercoaster ticket.  

I hope not.  But if so....

Here's my helpful link. jk

Admissions-ER

Ask as many questions as you so choose.  And if you aren't tended to, go find answers.  If those answers aren't good enough, get more.  Find out who the charge nurse is, and make eye contact, or introduce yourself.  Let them know who your loved one is.  And politely navigate WITH kindness and firm tone, you aren't there for a good time.  But a fucking world full of answers time. 

When you know you're headed for admissions, bring the following items in your bag. 

-You're welcome-

1. Hardcore Clorox wipies (and if you don't have any...they DO, ask for them.  They have a particular type so strong you'd better wear rubber gloves) -I currently tote around 2 jugs in my car, and 1 in my warrior bag. You will first wipe the bed-button areas, phone, light switches, bathroom knobs, table tray next to them, bathroom knobs, and toilet knobs.  Will will then wipe down the iv cart pole. And if you are a sneaky freak like me, you wipe down their computer, when they're not looking-boom.

2. Pack old clunker shoes-mine are hideous gardening clogs-thank you mom and dad never thought I'd put those suckers to work. While in the war, wear your army gear- First night, mine slid in shit. 

3. Introduce yourself to whoever that charge nurse on THAT shift for the day/night.  

4. Question meds.  Question dispensing of those meds. 

5. Always ask for fresh iced water.  And if they are busy trying to save a life down the hall, totally understandable, you get your butt down to the nurses station with your kindness hat pulled firmly on, and you ask for some. 

6.  Ask for 4 buckets for puke, if you have a puker.  No one wants to rinse and re-use.  

7. Ask for 8 towels. 3 washclothes.  If you are like your friend Lisa, you'll line the bathroom floor with 3, and 3 more for a path back to his bed.  Trust me.

8. Honor a good nurse and show them you care.  Smiles, thank you's, and respect.

9. Take note of the assholes.

10. Wipe down food trays, and food items.  Dirty hands are everywhere....even a hospital kitchen.

11. If you need quiet time, ask them for less entries once your baby is stable. 

12. Never hestitate to question ANYTHING.  EVER.

13. Don't question your gut.  Especially if you've been in the war for a while. YOU know what's best. They are just working.  And it's not their loved one.

14. Always expect food to take one hour.

15. Ask for 2 trashcans.  One for bathroom, and one bedside.  Trust me.

16. Rotate your blankets, washing any from home daily. 

17. Therapeutic pads are necessary for anything over a couple of days.  If they fight you, fight back.  Call the charge of the charge whomever.  

18. The iv cart has one orange button to silence that sucker.  But never hesitate to get the ball rolling if you see that bag is close to empty and it's before shift change.  Or you will wait, sucker. 

19. Food sucks in the hospital, but there's usually a few items that are "doable"-

20. Kindness.

This last visit was my most challenging.  Deciding as a mom to have him transferred to the area of specialists, yet learning the care wasn't so top-notch.  Hearing his side, my side and both sides just sucked. 

I belong to a support group for Stem Cell, and GVHD.  It's become a reality that infections and hospitalization is common, and most likely very possible again.  

For today I cherish each hour, each day that we are all okay.  The dust settled.  

I'll always be on guard.  

It's truly what I am made of.  

This weekend I plan to exhale and hopefully not inhale wine.  Or cocktails.  Maybe I can take long walks on the beach, and add extra gratefulness to God for standing us back up. 

Prayer works, and even though at times I feel like He's not listening.  He is.  

There's just a plan. 

Even if that plan takes me down by the hair and holds me under water for a little while....

I can get through it. 

Have a super weekend you guys....I hear the temperature guage is getting turned UP!

Love, and lots of KINDNESS-

This Mama Lisa Warrior

Hi  Otis!

ps- Spoke to Dr. Farol yesterday.  His exact words....Kris' counts doubled.  His healthy marrow recovered. Med sheets are correct.  They met on Wednesday regarding Kris.  He'll return Monday for labs and doc visit.  Most likely starting back up on Gleevek (chemo)-
Holla' for good counts!

pss- And if you're a family/friend member and you send him or me a reminder that he "needs to take it easy" and all your kind advice...- S.T.O.P. Because you're preaching to the choir here at Lisa Lynn Church.  And if there's one thing that rattles my cage, is when something is said, that I already know.
Unless you want to put my shoes on....
I'm quite sure you don't. 
bam.

Yes, Yes I Did.

It's kinda funny to read this, because when I received this cute sign from my cousin we were in the thick of shit.  Dab smack in the middle of the shit bowl.  I texted her my thankfulness, she replied..."sorry leese, sent this and didn't realize he was back in"-  

No worry there, because as I sat it on my desk, I stared at it and thought.  We're in shit creek, been in shit creek, been out of shit creek, in shit creek, and most likely based on all the stories I read on my support group, will be back in shit creek.  It's just part of the gig.  

Shit.

After spending exactly 7 days with him, and crawling pretty deep under eachothers skin.  Because hello, and 20X20 room with beeping noises and lines and poles that are no where near "ocean like" can become easily a disaster. Navigating through what I would call a nightmare there in Hollywood, I was glad to hear the words from him yesterday "gall bladder is better, and I'm getting discharged"-

That was one shit-fest.  

Looking at the bright side of things, he's home.  I can't dwell on counts. I can't and won't nag at the impossible about germs.  His transplant doctor making a visit yesterday with Kali present.  Stating in true fashion like no.big.deal....that this stuff just happens. Kinda pushing me down and making me scrape my knee's in true bullshit fashion, because if you ask me, why do they tell him to get on with life, yet don't go over the fucking facts of what can happen in "getting on with life"- WHAT DOES THAT MEAN?! That his gall bladder became inflamed from the GVHD, causing infection of the body.  So for the last 2 weeks of diarrhea and feeling absolutely horrible, at least a known cause is noted.  The pneumonia alone causing an eye opener, to him. And to this journey.  

Arriving at ER in Septic form.  Which within days could of cost him his life. 

Again, it's the realization I live with that every day is a gift.  It's not an easy gift.  It's like that gift you receive that you really don't LOVE, but you like because you need it.  You know?

Going through post-transplant has been the hardest part.  The healing will take months, and months, and years and years.

And there's not a single day, especially early morning that I don't fret the next hour.  Or moment. Or the sight of his number and name coming up on my phone.  

I can give him the tools, and help him navigate through these rough waters.  Truth is, he's tired.  He's tired of feeling like shit.  Like laying in bed all day long. Or often times lately, crying. 

He's tired of looking skinny and frail.  

The most traumatic hospital stays on this past visit.  Especially when you see that your mom is starting to lose it. 

Everything breaking down.  Bodies. Spirits.  Emotions. Gatherings.  

Support systems.  People finding ways to steer far away from something that is inevitable. Because the whole thing is inconvenient.  The whole process is one big shit fest.  And yet, your mom....she just keeps pushing and loving.  Even when at times she loses her temper and tells you off.

I'm tired.  He's more tired. 

I can't love any harder.  And I can't protect him any further.

I can tell him where to go. What numbers to call. What meds to take.  How to handle this person or that. 

But I can't make this pain and feeling go away. 

For now, I can put down that shit paddle.  Stand back from the shit river.  

Smile at him, and listen to his side.  Love everyone right back.  Especially to my family.  My sister that spent the night with him.  My aunts that would show up with food. And for a quick hug.

The many friends that reached out to me.  Offering help, even though they know I navigate better alone.  Because I am a freak.  

I walked the streets of Hollywood.  Offering homeless people clothes, bedding and love. 

I know no other way. But to just love.  Even when my heart is breaking. 

He's home.  He slept pretty good last night.  

I laid my head down last night next to my rock.  Kali in one room, Kris in the other.  

Life isn't that warm and perfect.  It won't stay that way for long. 

But last night I was able to put down my warrior stick.  My shit paddle. 

And sleep. 

And sleep I did. 

I have plenty of pictures to share.  Some of Kris, some of Kali and Bill and my rock of a friend Shelly. 

I have pictures of so many things. 

For now, just know we are doing okay.

I can't look at counts today.  Something I've been obsessed with since August 19, 2015.

Today, I still monitor meds.  I'll start honking horns at doctors and pharmacies tomorrow. 

I'll try to clear my desk and work, sharing love and hardwork with those around me that watch, witness and love me right back.  

I hope you all have a great rest of the week.

Remember, even when you're in the shit creek and your paddle has hundreds of holes in it, don't stop.

Keep paddling.  

Because, you just might get to the side for a break.

Or breather. 

And you can finally have a tall glass of red wine.  

Love to you all, 

This Mama Lisa- Warrior for Life I guess..

-KINDNESS MATTERS-

  Happy June 1st you guys!  Lots of birthdays this month.....And the first official day of summer!