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.