So Many Reminders...

This morning as I turned to "sleep in" a little, I was easily reminded of how precious life is as they read each fallen soldier. At one local cemetery in Long Beach, their spokeswoman clarified just how important that is. How taking six, or eight or ten hours to read each name, is meaningful. It's someone's son, brother, daughter, sister, cousin, mom, or dad. It's something so simple as your stare at the engraved wall, and yet each name, first, middle and last is someone's love. And they are gone.

This morning the meaning of it all grabbed me harder. Eyes wide open.

I've had a pity party the last couple of days. Truly, and honestly I have. My reasoning is pure exhaustion. When you are a parent, the worry isn't so much all about today. Because today I will wake, as I do, pull my warrior boots on and move. I will pack all I need for comfort. For him. I will introduce myself to nurses. I will do my ninja wipe down. I will double check my parking slip. (Racket here at Kaiser 10.00 a day). I will organize his blankets and negotiate food. I will double check his heart rate, and probe a little more about doc reports.

For me, it's tomorrow. And the next day. And the day after that. It's all the what if's, brought on by the traumatic results of our past. It's the hurry up to wait. And the small easily found mistakes. By nurses. By aides. Or like yesterday when the visitors bathroom looked as though someone took an actual bath in the sink. Took a shit, and pulled all the papers, from where all paper could come from and scattered on the ground. Myself, along with another RN (why she had to use that bathroom..?) could do nothing but stare at eachother. My one and only concern, is trappling my way back into my sons room. A room that only I clean with WIPIES the way it should be cleaned. 

I'm exhausted from doing this for a week, as I'm sure he's exhausted of hearing me. We've discussed germs. Viruses. People. Cleanliness. Hand washing. It still blows me away at how many people I see that don't wash their hands. Lick their fingers. EW. 

My game is changing. My soul hardened. My love will never fade. But my mind, body and spirit is exhausted.  

I'm sure plenty of my words are just filled with frustrations, because I am truly a mama warrior for life. I still grapple with the sadness of why he was chosen for this. Or as he said yesterday through tears, "I guess I picked the short straw".  And anyway you look at it, it's unfair. 

Looking at the bright side is my new found ability to commute to and from this place. I've got exits, potholes, familiar transient crossing areas, long red lights, versus short, on ramps, off ramps, good eateries, good wifi on the weekend, not so good on the weekdays, areas on the 91, 710, 5 and 101 that clog for only a short time, and elevator jams.

If there's one thing I've learned on this particular visit is the etiquette of using an elevator. 

Listen here kids.....When you push the button to go up or down, and that door slides open....

WAIT. People are most likely getting OFF. And so, when the door opens and you charge forward....

Guess what happens? A cluster fuck! That's what. 

Stop for a second and wait. As people get out, you get in! Magic. Pure magic. I promise. 

I was almost ran down by a fine elder last night in a scooter....a SCOOTER.....a man well into his 70's....charging in when 4 of us are trying to get out.

After a long long day here it was everything in my respectful body to not tip that feller over. LOL

Simple science. 

You're welcome.

Today his docs say infection seems under control. We've waited through this long weekend for a cat scan tomrw. Along with antibiotics every six hours. 

All counts are still wonky and low but hoping they'll recover with changes of meds soon.

His tacrolimus levels were high and so they've managed to decrease those too. His poor hands so shaky it seems hard to even use a fork. 

I hope this week brings good vibes, positive answers, and lots of patience.

Something I need to check in at the door.

Big love, and many reminders to cherish those we have with is, and those we've lost.

This Mama Lisa 

PS. If I seem disgruntled, I am. Boom 

The Only Little Girl Who Stole My WHOLE Heart....

When they put her on my chest I can so vaguely remember thinking a hundred thoughts about the gift of having a little girl. During my pregnancy I had no less than 10 ultrasounds to confirm the anatomy. Each time, I'd walk to my car...or rather float to my car gleaming with the thought of dressing up a girl. What I didn't understand was the lifetime relationship I'd build with that little girl.  She was a whiny cry baby, and one that was sensitive to noise. She rattled my cage those first few months. I can remember staring at her at 3am with explosive bright yellow shit all over her belly, legs, feet, and sometimes all over me...as I whispered to her screaming red face going as fast as I could to put her little kicking feet back into her pj's. I always loved those sack style sleepers. Shoving feet in, tying the string in the bottom, scooping them up to feed.
The early days of breast feeding offering us a whole different experience. Shoving a red hot, over filled mess of a boob job LOOKING boob into her mouth, talking as calm as I could to just get her calm enough to not rip off my nipple.

A true mess.

We survived.

Something I've always been proud of, was actually getting through it.
Pretty much alone.

A year later, I'd toss in the nursing towel, and watch this little baby turn into a toddler.

Soon, we'd get through nanny transportation, preschool, Kindergarten, elementary, middle and soon high school. All of which I'd do my best to guide her. Through sports, and friendships. I'd push through with her.
As she went away to school, I felt as though my job went well, yet I missed the moments we'd always shared. The good and the bad. We never had anything bad, bad. But you know, the arguments, the attitudes. The speeding tickets. Ten parking tickets. The frantic issues when our printer wouldn't work, and she roll her eyes at me, telling me we have NOTHING that works, and our "everything" sucks. And how we should have bigger and betters and I'd just stare at her with the hopes that one day she'd become an adult and realize I work my tail off to provide.  That all I did for both of them was my commitment to them. Breakfasts, lunches and dinners made from my heart. And sometimes from tired hands each morning. Sleepless nights waiting for them to return from dances, and parties. Driving to pick her up from wherever she didn't feel comfortable. Most always, a sleepover. They weren't her gig. Not til later years when she'd find her favorite home, and of course the high school years when they had an "agenda".

I wasn't able to partake in her twentieth celebration this year. First time in twenty years I'm not able to hug her and present her a cake. We have some making up to do. That's for sure...
I'm proud of you Kali. You've paved the road you want. I have Faith that you will move the mountains to take life by the horns and do what it takes to survive. Remember to put love first. Humanity and friendships are the main ingredients in the recipe.  You have two parents that stand behind you, and talk proudly behind your back. We sit and share a cocktail some nights and comment on just how far you've come. How your navigations in things are so far in control.

I hope these next chapters are good to you, and likewise to them. Leaving your teens is a big deal. One you really won't comprehend until you're in the next chapter book. Thirties. You'll look back on the silly antics that your twenties gave you and what you gave it.

God willing, I hope you stay safe. And healthy.

I hope you choose to dance. Wherever the time is rights and if it's not, I hope you know to laugh. And smile. Storms will come and storms will pass.

Remember, Love Never Fails.

Kindness matters.

Happy Twentieth Birthday, Kailyn Mae.


I love you more than I do myself.

Have a good rest of your time away...

You have an awesome Dad, and some rock solid friends..

Remember to thank Shelly for her love, her giving hands for food, decorating and guidance.
Like when you couldn't back down the boat trailer.
You know........sideways?

Love,
Your Mom

Ps. Just spoke with Kris' doctor. She said all blood cultures are coming back negative. Meaning, the antibiotics are working. Trying to get spit culture today *ew*, for labs. Firm poop is a good sign *double ew*, and he can finally walk the halls today. He's been confined to a 12X12 room again for a week. It's time to get things going. Platelets are rising at the slowest rate ever, so he has to wait for those.  One more scan of his gall bladder (thoughts are, it is swollen and sore meaning that because of GVHD in the gut, it can filter through that, causing havoc and lots of pain and diarrhea, something we don't need with soo much weight loss as it is)

So....a few more days. Waiting on answers.
So far, our doctor this weekend Dr. Wong (female) is compassionate, firm, detailed and calm. She reassuring and thorough. Can't ask for anything better....right?

Today's highlight for ME is a place called Sidewalk Cafe down the street in the concrete jungle. Middle Eastern food.....HOLLA!

Peace to you all, and remember why we celebrate Memorial Day. Some gave all.

XO

In A Concrete Jungle

Well, we've made it to the day marked Thursday. Results this morning from last nights Cat Scan show some sort of marks, or issues with his gall bladder. Something that can't easily be explained by the doctor this morning *shocker*, but that he'd have to discuss with surgeons. Surgeons? Kris was here alone as he navigated with both doctors. Second one coming in to say they're still trying to figure out where the infection came from, but with strong predictions of the pneumonia being the culprit. Gall bladders are a filter, and with whatever went on there, it also most likely spread the infection through his body like a monster mash.

He's depressed today. We've shared words back and forth that are becoming more heated without reason. I have my opinions, he has his. It's probably not the best place to negotiate opinions. But..he is sassy and so am I. He's impatient with nurses, speaking his mind like a mad man, enough so that I leave the room. Rightfully so, he has every right at times. There's the typical ordeal of hunting down nurses, assistants, housekeeping, cups, ice, straws, bed pans, etc. They play dumb, or most often disappear just after we request something.
He's schooled a nurse here on how to lower the volume on the IV cart. How to also put the urinal and shit measuring cup together.  I've had to step away because I want to laugh. It's not a laughing matter but when you notice a staff that should be equipped or schooled who doesn't know the gig...you step away and laugh. Or you cry.
Or you become a B word. Or D word. Or all of it.  The phones in his room aren't reachable and are the old square tan push button box of a thing phone. Need to call food in? G.O.O.D.L.U.CK.

His platelets rose some over night. We can hope that with these infections, and adjusting of meds, time will sooner than later put his body back into place.
He's eating well, and building back up an appetite.
It feels very foreign here. It feels so far, and so odd.
But it's only miles away really...and when I step out of my car, loading bags into my shoulder, I remind myself that being a warrior and a mama is worth fighting on.

I pray when I wake, I pray when I drive. I pray when I'm scared. I listen, and yet I vent.
I read aloud to him the things I need him to hear. And I fold em when I know I need to.
His words to me this morning as he cried, we're exactly how he feels, and what I've said.
He never wanted cancer, and to feel this bad after transplant. He super scared and super bummed. For him, and for all of us. One of the hardest things for him is spending nights alone. Something I've had to allow him to deal with.

It's a beautiful day today. It's not easy, but it's worth the fight!

For now, I laugh through tears. I hear IV beeps down the hall. I continue to deal with language barriers and the "she's" are most often times NOT "he"- (because I have to correct them with my sometimes sharp tongue.
I'm waiting to get his bed changed, and food ordered.
Last night while driving home and talking to Bill, I tried to sort my tears, and fears. And this little epiphany hit me. For years and years I've put together parties for my babes. I've had yearly themes.
I've dwelled over their birthday dinners, and when to lay it out.
Her dad put it all together. Sending me pictures of his final layout.
He did awesome! She's a lucky little birdie...
Thank you Shelley. Thank you friends and family that come together in these circumstance.
Scott his big brother as he calls him staying the night.

One more day to better hopefully.

For now, we pray for counts to rise, no fever and no GVHD with these new med changes.

Happy Memorial Day!

This Mama Lisa

Sunset And Vermont

Well, as per my request Kris was transferred last night. Kaiser Sunset as it's called is a place that houses specialists. Not just specialists, but the transplant team. At 8:30 last night the ambulance drivers made their way to his room. Scooping him up and strapping him onto the gurney. As much as I wanted to snap a shot for keepsake purpose, a part of me said no. It's hard to look back on the days of past. It's hard to look at where we were and where we've come.

He arrived here at Kaiser Sunset, tucked away on the famous Sunset Blvd and Vermont. The beautifulness was arriving here at 10pm last night to find both of my aunts standing next to him in his room. My Auntie Nettie works here in Labor and Delivery. My other Auntie Lyn lives down the street. It felt like that warm blanket I talk about in life. That firm hug that isn't assumed, just felt.

He has lots of labs. Lots of blood work. Lots of antibiotics. And lots of concern. Infection and interaction with meds continue to knock his platelets down. A cat scan tonight at 9. And more results to confirm.
The road isn't ways and most likely won't be for a little while. His spirit is broken at times. He doesn't like to be alone. Something he's battled since childhood. His mom now leaving him at night.
I'm a warrior. I push. I plead and I help. I challenge nurses who challenge me. I have language barrier issues, with the he's and she's. I go toe to toe with assistants who tell me a bed therapeutic pad can't be used. They stand up to me, and learn quickly i won't back down. It's a fucking pad.
I win. I love, and yet I fight.

I'm tired. I'm not proud of my demeanor, nor am I proud of my sharp tongue.

He's navigating through the fears of what he was told could happen. We have Faith in our doctors and transplant team. I come and go. The commute is no joke. The parking just the same.
It's never been easy, and yet I still move on. He's trying to be strong when he is so weak.
Bill went on like a super Dad and set up Kali's birthday weekend with the help of my friend Shelley.
It's because of love, friendship, medicine, science and strength that I will get through.
And when I speak of "Me", I mean "ME".

I've said it a million times before, I'm tired. And I will never understand this chapter handed to us.

For now,

I will try to keep my chin up and my cheeks dry.

Have a safe Memorial Weekend!

My sweet baby will be 20!

This Mama Warrior

Rattling Cages

One of the things that has seemed to blossom (back) out of me because (in my younger years I was a tiger type person with fire that would flood through me in a quick instance) and through the years I softened. I learned that "Kindness Is Power" and it most certainly gets you farther than the opposite.

When you go through a crisis, whether it be medical or death, I believe it changes you forever. As much Faith, prayer and spiritual guideness you have, it just does. I've been fighting back to be the old Lisa. To smile when at times I want to cry. Or tell people off. I try to love harder even when at times I want to crawl away from it all. And from being the over bearing worry mom that nags. And walks in circles or paces around frantically because she wants to protect her only son.

We are here at Kaiser. Yesterday I started rocking boats. This morning I rattled cages. Today I do both. Truth is, I'm scared. He's scared. He has pneumonia. Along with that fearful word, the infection has spread to his blood. Fever gone. But he asks honest questions to doctors. Questions that some times he really doesn't want to hear. His body is delicate. It's at a level that microisms of tiny bugs in the air can attack him.

His white counts have rose. His platelets dropped even more. My request this morning was to have him transferred back to where his transplant team can closely monitor him. Along with that, a request to have a port put in. Labs are at an all time high. They're running out of places to draw, along with two different IV's that have "come out" and when they "come out" blood is everywhere. Blood is everywhere because platelets are at 41. Fluid filled his upper hand area.

These days are worth fighting, praying and doing what I can.
They know who we are here. This place doesn't specialize in post transplant patients.
He's frustrated with me today. As much as he wants to be thankful and loving, he scared.
And so he's blasting reggae. He's defiant about God. About praying.
Right now, he adjusts his sails for me to navigate the waters. He knows I still have the fight in me to get the best if the best.
I'm tired. And worn down.
When you fall into the life of cancer. It's all the risk. Of it all.
As much as we want to just be better, and healed....it's all part of it.
Can he be a boy in a bubble? No.
Can I suggest and love, and do what I can to help him help himself? Ya.
Suggestions, arguments, protection and navigations. It's the deal we are handed.

For today, we wait. For labs. Changes of medicine. Doctors who are working on finding the best path for a guy they don't know.  Letting me talk or vent because it's my job here in a place where a nurse
Asks what liver transplant meds he's on. While I rub my forehead and clarify otherwise.

It's not their speciality. They're here to work. Just like you and me. Work.
Their days are long. Nights are even longer.
So there's the update.
Most likely a transfer. To Sunset Kaiser. A port/picc line once infection is under control.
Medicine(anti-rejection) drug is eliminated.
The science of medicine is no joke. One fights with the other. Graft versus host disease is the player in the game. Steroids. Infection.


I most certainly appreciate the prayers. I'm working on Kris. He has Faith, but wants to have signs from God. He's angry and he's confused.

All my love, and peace to you.

I'll try to keep the peace around here. Lately, I've been losing my shit.

This mama lisa

Update

Wow, it feels like forever ago that I typed that word out.
For some of you that follow along on Kris' path, and or mine, for that matter probably get a feel for when things are good. When things are bad. And when things are silly. As you all know he's been trying to get back in the game of life. In good times, and bad, he tries hard. He wants to feel normal. He wants to eat normal. He wants to love normal. He wants to hang out normal. He wants normal.
For the last month or so (more) I've grappled hard with letting him go. Not clipping his wings. Letting him be him.

Over the weekend he had a great times with friends. He began to feel yucky on Friday. Something I so wickedly felt would happen with the decreasing dose of Prednisone. The Devils drug. I worked myself up enough to fill extra trays for him filled with all the meds he needed. To unlatch from my hovering.

Yesterday I had an early morning down to San Marcos with Kali along with a meeting down there. Driving home I mentioned that Kris was extra quiet. How, like the other hundreds of days, I walk around on egg shells. Of worry. Of "what next"....

He called me at 4:30pm as we arrived home settling her in from her school year. Unpacking. Washing. Sorting. Nesting.
His words..."Mom, I think I have a fever".
Jen would drive him here to Kaiser, where I, WE experienced the absolute worst night ever in ER.
Things weren't like this last year. Here. I can tell you that.
The simple mistake made, he thought arriving at an urgent care would mean, antibiotics, and on the road you go.

Wrong.

By midnight I dropped down to the lowest point yet. I stood up for our hours being avoided. Nurses with attitudes. Charge nurse,with an even bigger attitude.
They'd take a cat scan of his lungs. We'd finally get into our room at 12:30am. 5th floor.
Tucked somewhere that is foreign. NOT City Of Hope.
I discussed with the Internal Med doctor (whom was actually awesome) how to get him transferred. How to get with our transplant team. How to help him. And now.
I'm over being nice. To it all. I vented to him. I cried myself silly AGAIN last night. Laying in a recliner next to him as he puked and shit all over the bed. Twice.
Cleaning it up. Talking him through it. Wondering why the fuck he is going through this. Why.
Why our family.
Jen spent every single night with him here. And City Of Hope. Months ago her family made plans to visit her brother, sister in law and their new baby in Michigan. A trip that Kris offered to stay at home with all 5 dogs. He can't do planes.
This weekend we also had plans for Kali's 20th. Havasu a place where we seek comfort. And laughter. And good times. And friends, mixed with family.
His guilt fielded out like weeds. He continued on to me about how bad he feels. For everyone. For Jens family. The dogs. Us.
As I lay here in this recliner with one of my most serious sleepless nights, I wish I could relay to him that none of that matters. We want him feeling better. The old Kris.
Viruses tackle him from the back. He can't do public. He can't do hand shakes, and the major mistake of not washing his hands. And then poking into his nose.
It. Takes. Him. Down. (But my world of nagging, poking, pushing, arguing, texting...is beaten down)

And so here we are.

Room with NOT ocean view but the top of air conditioner units.
Waiting. I'm praying. I'm angry. And I'm sad. I'm hurt and I'm grateful.
One day at a time...in this life. With my birdie.
Fighting to get back in the game.
Whatever that is.


Safe travels to Jeff, Renee and Jen. May you cuddle up that new baby girl, and soak up Michigan during the change if seasons.
To my sweet Kali. May you pray with me for answers. For your brother.
For my fellow transplant warrior moms. You see us? You feel this? You've been here. You know the walk. Keep on warrior mode. Because for me, it just doesn't seem to be the easiest to put my warrior stick down.

Til my last breath.

Today....Today, I pushed for more answers.

Love hard,

This Mama Warrior Lisa typing on her ipad with no spell check and grammar check.

Strength. Wings. Borders. Happiness. Friends. Fish.

Kris explained to me this week that a trip to Baja was in order.  He moved along with his plans while he also received and shipped out a new batch of his Current Crew goods (new designs not on site quite yet but on Instagram---super cute!).  Something he pondered in January in the hospital.  Asking us if we thought it was a good idea to just stop everything and step back for a while.  My first opinion was, yes.  Take a break.  Get better. Heal and learn to live and work again. But on your time. On what Kris feels best doing.  His final decision was to move forward.  To not give up something he worked so hard to build up. (Even when his mom thought our ocean water got him sick from radiation thanks to the leak in Japan.) Depleting my wicked thoughts and learning to move through my fears.

Fretting at times of how he'd get the energy during his hardest days to navigate through orders, production, banks, shipping departments.  All of it. 

This week after his appointment on Tuesday, his first shipments would arrive.  He grabbed the monster by the balls and ran with it.  

Shipping orders.  Emailing customers.  Promoting on social media.  Moving little mountains.  Something he wondered if he'd have the strength to do. 

He did it. 

In the mix, he'd continue on with plans to San Quintin, Baja Mexico.  A place that holds a very special corner of his heart. It's a place where his friend Kelly resides, along with his father.  Both Americans.  One retiring down there after a gnarly divorce. He lost everything. Instead of fighting the fight here. With minimal items left.....he left.  

He's happy in a place where minimal is maximum.  Maximum in the happiness department. Where dirt roads meet the ocean, and the ocean area greets you with, as Kris says..."some of the nicest people he's ever met, and hung out with"-

People that live with minimum necessity.  They live with what they can afford, but most importantly, they live with what simple living offers.  It's not lavish by any means.  But they are happy.  

The first time he went down there, a culture shock woke him up.  Mostly because of the stray dogs. 

He'd fall in love with Kelly's dad, and his love Maria.  A concrete floored home.  

Leaving behind the life in Southern California and all its greed.  

Living simple, by home grown, naturally organic foods.  An ice box with ice. Not a commercial refrigerator.  

Smiles on their faces as Kris and friends come and go.  Because the simple life there isn't about who's to impress who.  

It's simple living.  

Kris went on to explain the roads.  How he travels about 5 hours in past Tijuana.  To land another hours worth on a dirt road.  To a place that hugs my son tight. 

A place that offers real people.  

A place that most likely envy's Kris' luxury car, yet you'd just wish life wasn't about that. You'd wish and hope he doesn't get the wrong kind of attention because of a metal, with rubber car. It's a place where people live off the land.  And ocean.

A place that shares food like its water.  Always offering a place at their table.  In their homes. A place that will teach you a thing or two about patience.  And about kindness.  How a smile will move humans even farther. 

To meet you.  To greet you.  To thank you for driving that far.  Kris brings goodies every time he goes. 

As he said last year...."If I didn't get sick, or know I would fight this battle, I could easily live there Mom"-

I can see the purity in that thought.  I can see how getting away from the greedy hustle and bustle here makes it worth that thought. 

I've viewed his early morning pictures.  In the marina, where just the ripple on the water top makes for a tearful eyed mama.  To know he's deep down in a culture where simple people give love. And he gives love right back.  To know his surroundings are of a natural environment that isn't laced with fancy material expectations.  But yet, the complete opposite.

It's hard to argue about safety when you see where he lands.  Sure, there's danger. Sure, there's passing through the notorious TJ and all it's shenanigans.  But....isn't it true for LA?  When you see guys traveling through with fishing gear hanging out the side window.  They just know. 

So there's the new fear of all things germs for him now.  There's this extra little list of "suggestions" from his mom and his dad.  Reminding him to take it easy, and remember to be cautious.  

I sent a box of wipies.  Wipies in all forms. Hands.  Ass. Soothing ones for the disastrous outcome of "the shits"- Extra day's worth of meds, if by chance he gets stuck there.  Water, gum, toothpaste, Ensure's....

You know that mama box just to help you help yourself to finally start to live this life. 

Your body is just 4 months old on the inside.  Yet, you're trying to get back in the game.

Weak at times, and most certainly beaten down by the fight you went through.  

I hope he has a meaningful trip.  A trip that is full of love.  Full of good fishing.  Good smiles, and most important, great hugs and chuckles from his friends that live down there.  They've been yearning to hug his sweet neck since the last time. 

Enjoy my boy----- you Baja dudes!

That very marina that holds lots of good memories and great food, according to Kris.

Have fun this weekend everyone.  Whatever you do.  Just try to have fun.   

Or sleep.  

Or read. 

But always pray. 

And if you want to pray for him. And his friends down there in that beautiful place filled with natural goodness...please do.  

Go get em Kris!

This Mama Lisa

  And pray for Seal Beach- Friday morning lost a landmark.  A place once filled with laughter. Love. Relatives in from out of town, walking to that special place.  At the end of the pier.  

Good bye for now Ruby's. 

Throwback

 A year ago.  Almost to the day. Bye-Bye dorm life.

 Back when my little Merkamer was a toddler.  Man, to sit through a day with him again....

He loved books so much.  I'd read to him every single night before bed.  My sister would drop by often to bring a new book.

And of course his passion of this. 

Happy Thursday.....

My mind, body and soul is letting things go.  Praying hard. Crying like a cry baby still.  But thankful for many things. 

 Most especially for these two birdies.  

Jen, his rock.  The girl that has endured puke, poop, tears, anger, baldness, weakness and bare bones.

She feeds him.  Stands up for him.  Stands up to him.  Loves him like no other.  Cooking, sorting, doing, and giving.  Jen.

The girl that hasn't left his side, even though at times I'm quite sure she feels like doing so. The girl that loves us, and lets us love her.  Jen.  Jenny. 

Have a good weekend everyone....

Love to you all, but most important....PEACE-

This Mama Lisa

Ruffled Feathers.

My Tuesday started just like all the rest.  Early rising, coffee in hand while reading my devotional.  Mental sorting the minute I know I'm alive....you know..... what I "should be worrying about"- Its truly awful.  The trait I wish I could kick to the curb.  And when one worry is gone on one side of the scale, I simply start to dwell on something else. 

Sicko. 

It's interesting how my twisted tummy and nervous demeanor quickly changes once I sip my coffee and settle down with a good read.  Most every morning the word is spoken directly to me.  My daily devotional kids. It's where it's at.  

I jammed to work early before heading back home to fill my boys stomach with what I thought would be a great breakfast to start off a great day.  He mowed down most of it, to quickly announce "he had to puke"-

One thing we've all come to understand is his stomach and taste buds have a mind of their own.  One minute they are gettin' along just fine with him...while the next minute, all hell breaks loose.  And that was basically the gig yesterday.

My reason for going along with him to his appointment, was my unanswered questions.  His mouth. His gut. His meds. His labs.  Last week I rocked the boat.  Or shook the hut, if you will.  It all started in the pharmacy when one person played dumb, and the ripple effect continued as I left messages for each doctor.  And nurse.  And the mayhem continued.  And it was shark week for me, and my pity party continued as I put on boxing gloves and made my way around the medical field just trying to get answers.  They all got to know who Mrs. Stahl was reallll quick.  Just answer my fucking question.  Or return a call and we can all go on with our days.  When you haven't replied back about his Tacro/Siro levels (which are life saving meds) and you haven't replied back about if the labs I requested were in fact in the system.....

Houston. We have a problem.  I have one shot at navigating through this.  When his entire med summary sheet was "accidentally" deleted from the system and I have to spell out each med to do YOUR job for you---- We have a problem.  

And so.....

Mrs. Stahl let his stomach settle. Filled his med box, grabbed another puke bag, and wipies.  Drinks and pretzels to help just in case...and off we went to the concrete jungle.  Kaiser, Los Angeles-Vermont- Down the freeway we went.  No matter where we are, or what traffic we sit in, I just love to sit within 2 feet from my son.  I cherish every moment he is here.  Even when he's riddled with steroids that make him chatter like a chatter box birdie, and he tries to blow snot rockets when he exits the car I scream with all of my soul. You guys.  Snot rockets. 

Wipies rule the world.

Mrs. Stahl navigates that parking structure swerving in and out like a power ranger.  Cracking myself up because if I was shot gun I'd be slamming my foot to the floor and most likely dropping F bombs to the person behind the wheel.  But it's me.  And ain't no stoppin' me.  jk

As we got into the office. I could feel his doctors need to explain to me.  First, questioning us and him. But most important trying to appease me. Looking at the "mom with her big bag of concern"- Something I don't do well with is making someone uneasy.  I'm not there to give anyone a hard time.  I just want answers. 

Listen here kids, I was looking for answers last week. A simple return phone call.  Or email.

He'd take a look into his mouth and take two steps back.  "KRIS THIS IS GRAFT VERSUS HOST OF THE MOUTH"-  Kind of like a "oh shit" moment.  

Kris says back..."I told you guys...and Dr. S"-  

Also he went on and on about his food, and why he lost a pound, because he can't taste.  And that he generally feels like shit.  That some days he doesn't want to get out of bed, while others he does.  That his stomach is tore up.  And he shits like ten times a day.  And his ass is sore. And his mouth looks awful.

Listening to Kris vent to him about his frustrations, and how no one really understands. 

I do. 

I clarified with the doctor on "what's the best way to get ahold of them" when I have a questions.  It's not like I'm asking if a certain band-aid is worth buying or not. 

I have valid questions that should have been answered easily.  By email. Or phone. 

You know, 4 months post transplant.  Just a little.....concerned still.

His counts look good.  Platelets dropping causing a small means of concern.  Most likely caused from his oral chemo. Lost a pound.  Which is most likely caused from all the diarrhea.  Adding a new med for his mouth, taking away one steroid-(which we will watch him slowww down-appetite and all)-

Back down the concrete jungle streets we'd go.  Back to the parking structure, and down Sunset Blvd to the 110 we'd go.  Headed to a place he'd want to try called "Birdies" for lunch.

Such an appropriate name. Parking down the street and through an alley.  Watching him aimlessly make his way into the place. Pulling up on his pants as he snaps pictures with his big lens.  Of his mom.  Of the dirty alley.  Of course, we make our way into a filthy bathroom just to wash our hands.  He, of course leaving his stomach trail behind. 

Kris is obsessed with food.  It's one thing that makes him happy right now.  Thank you steroids.

We'd rate the place a solid 6.  And leave.

Places we go, and moments I can be with him are all I have.  To still go with him to his appointments, making for a long day.  It's all I have.  It's what makes me feel better.  To help him feel better. 

It's a mom thing.  It's something I signed up for when he came into this world.  I remember picking up the pink antibiotic amoxicillin to help finally clear the remnants of a bad bug as a toddler.  Or a rash.  Or whatever.

And now, I am navigating the best way to help him feel better. GVHD. His stomach.  His mouth.  His skin. Post transplant.  Never in a million years would we figure we'd be in this fighting ring. 

Getting back into the groove of life.  Just trying to live.  To not worry about the medicines. 

To not worry about a pharmacy tech that forgets to put in the prescription and so you have to stand and wait an extra 30 minutes.  Or this place was out and so you go to that one.  Or you drive to Baldwin Park because that pharmacist is the only one that "knows how to mix the corn-oil" to help your stomach.

Truth is, we don't know which one is working.  We really don't.

What we do know is the ones I pick up and make sure they DO have in stock are the ones that are saving his life.  Like Tacrolimus, and Sirulimus.  And Acyclovir.  And Gleevek (chemo)-

The others are up to me to tackle, and follow up and through to make sure shit happens.

Each week. 

Each month.

We sat in traffic as per usual, but nothing I will ever complain about.  Again, sitting next to him. Talking. We talk about everything.  And to me, it's the chance to share life.  While we can.  I seemed to have passed the exit to the next freeway we'd need, landing us on side streets at 3:30pm right when schools let out-

Finally making it home, I'd stack our couch full of all the things he needs.  Medicine. Food. Clothes. Mom stuff. His stuff.  Finally he'd say...."mom, it's so hard to unload this stuff when I get home"- 

Ha. 

Once he left, I'd begin my summary breakdown. Going for a long walk. Filled with prayer.  

Calling my parents.  Calling Bill.  The little updates that happen post-doctor visits.

Missing a gathering of girlfriends for birthday celebrations at the beach. 

Shutting down like I do.  I literally decompress.  Watering my plants. Tending to chores.  

Making notes, and praying. And long.hot.showers. And praying. 

I don't do phones.  And I can't do people.

I clam up. 

#weirdo

We all move back on through life.  For me, I'm making arrangements to move Kali home for the summer.  Storage units, movers. etc.(sending her info on what, where and how to handle) I'm also working my normal job that brings my income and also entails lots of phone calls, emails and humans. Imagine that.  lol

The days are moving fast.  The moments are cherished more than ever. 

I'm letting go, but holding on.  I wish I wasn't such a mess.  I wish I could close this chapter and walk away. Or graduate, if you will.

I wish I could live as though things won't change. Tummies don't hurt. Platelets won't keep dropping.  Steroids won't make things weird.  Cancer will never come back. My kids are protected forever.

Truth is, life isn't fair.  It's up to me to navigate slowly but surely through it. 

For now, I celebrate larger bottles of medicine. The Tacrolimus above in the largest bottle I've yet to see.  Wednesday morning excitement!

#VICTORY - Relieving me from going back each week.  4 bottles of Nystatin for his mouth, versus one.  Things are moving on up kids.

Someone's rockin' boats and rufflin' feathers......

 I can tell you one thing.

My son will get all that he deserves.

One call, email, pharmacy, doctor and lab visit at a time.

If Mama Bird is there.....

It will happen.

How's your week going so far?  

Kali has one more day left of sophomore year in college.  An apartment that will be emptied and cleaned by this weekend.  A storage center close to her that will be handled, rented and dealt with by HER. 

And one mama that will be rockin' steady in about seventy two hours with BAD COMPANY.

You guys.  

Did you hear me?

B.A.D.  C.O.M.P.A.N.Y.

Feel like makin...dun...dun..dun.......dun...dun..dun.....dun...dun...dun....

Lots of love and peace with you.

This Mama Lisa, aka worrier warrior for LIFE!

 

Well......

It's here------> Friday The Thirteenth.  How about that?!  Bill, I say this directly to you, with a chuckle on my face.

FULL MOON AND FRIDAY 13th! 

He growls and howls at my superstition.  I can't help it.  ha.

Can't stop, won't stop.  

A few things about me.  Some you probably know, and some, maybe not. 

I totally believe that full moons add mayhem to this Earth. And humans.  

I don't really have fear of the whole Friday 13th vibe.  

I am trying to get "into" the gym.  Not my thing, but giving it 85% of my thoughts, mind and body. 

I don't wear socks with my gym shoes.  Nike hand-me-downs from Kali.  Thankyouverymuch.

I love coffee. 

 

I put milk and raw sugar in my coffee and steer clear of fancy creamers-

I love cold water. I drink a gallon a day.

I love old school hip-hop/rap.  Hey Dr. Dre, Snoop...NOTORIOUS B.I.G. bring it baby.

I loved our dinner with Kris and Jen last night.  Heart overfloweth. 

I love clean sheets and a tightly made bed. 

I love bread.  Preferably squaw. Sourdough, give me butter baby. 

 Someone recently told me something that grabbed my heart, and squeezed it hard-"Call those you love because one day you won't get the chance to hear their live voice again"

I love to laugh hard. Preferably NOT at inappropriate times. #drivethrus 

I have such an amazing relationship with God.  

I don't care to sit and watch movies.  #weirdo

Give me documentaries and call it a day... #love

My eyesight is...gone with the wind.

I love horsepower and fast boats. #nosurprise

I have zero tolerance for a crying kid in a restaurant.  #takethemoutside  

I love redwine.  #3glassmax. #2minimum #cantdrinkalone #boring 

I could stare at the ocean or lake for hours and hours. 

I am petrified of needles. 

And heights. 

I have bad anxiety in cars.  #poorbill 

I have anxiety right now, period.  #bummer 

I love the smell of the river in Parker, or the lake at dusk.  

I am in awe of birds. 

I love all animals.  I will save rollie-pollies or caterpillars. 

I love to sleep with white noise. 

This whole transgender bathroom thing is bullshit.  Boys room, girls room, period.  #sorrynotsorry

The political circus is almost embarrassing to us US citizens.  Our Fore Fathers would be ashamed. 

I have a hard time with rude customers. Rude to me? Take it right back dude.

These glasses are still around

 

I try hard to remember the motto "Be kind, you never know what others are going through".

Public bathrooms are my worst enemy.  I am a ninja in there. #dontaskmetogowithyou

I stare at all pictures in peoples homes. 

I still crack up when I see that meme of Kermit The Frog sipping tea with sarcasm and think the same thing when I'm sipping coffee and someone is pissing me off.  My mind goes-a'-whirlin'.  #ifonlyyouknewwhatimthinking.

I am not a fan of plastic surgery, yet would love a boob job. #scurrred

I'm not into fancy cars.  Don't care what you drive. #itsmetalwithrubber

Fridays are my favorite day of the week. #howboutyou

 I am thankful I felt life inside of me. 

I love to see lovers love. 

I know there is someone for everyone.

This life is fast, yet I have a hard time living that whole "for the moment" vibe. #schedulefreak

I miss soccer. 

I look forward to summertime evenings.

I can't wait to meet our donor. 

I'm recently scared of scorpions in Havasu. #wearingslippersatnight

I chronically check the front door lock.

I think those that abuse animals or leave them outside should have products tested on them, versus animals. 

---let's see, does this burn your eyes-- oh good. HA! 

Animals are a part of YOUR FAMILY. 

I love little lights in home windows. 

I am a hippy at heart.

 I am thankful for you all.

Have a sweet peaceful weekend. 

Doing what makes you happy.

Love,

This Mama Lisa

 

 

Tenacity To Move Mountains.

Kali...

I know you are pushing hard right now.  Finals.  Another chapter closing.  Sophomore year in college.  

Funny, never would I have imagined you away at college looking at this picture. 

I just never looked that far into the book of life. My life.  Your life.

You just live. 

And give.

And love. 

And protect.

And Mother.

And hope to shape a child to be capable. 

To be a decent human being.

When you sat in the library all day yesterday and headed back there this morning, it makes me proud.

Texting me at 6:30am, getting your stuff ready for the tackle take down of another day, moving those little rocks in life. Making mountains.  So many papers to write, and finals to study for. For now, you're building your mountain...

I can see it's not easy.  I respect you in more ways than you can imagine. 

Watching you navigate through, along with learning the ropes of dealing with life, and roommates and apartment living, and parking situations, and middle of the night scares, and Uber-lol, and groceries and amazing meal prepping and the meals you've learned to cook because you don't live at home.  

The moments you've called me so frustrated of life.  And living on your own.  When two years ago you'd do anything to pack it all up and come home. 

Now you've decorated your room just perfect. 

You keep things clean the way you like it, and cherish a clean house. 

You get it.

I get it.

Especially when yesterday I was putting in a notice to have your mail forwarded back home for the summer. And closing out your electric bill. SD&G taught you a thing or two, like to check your mailbox because THEY WILL TURN YOUR ELECTRICITY OFF IN 48 HOURS-lol  #checkyourmailbox

I could never have imagined that you'd be sending me texts of pure exhaustion of study when you'd rather be home with us, or with your best friends celebrating a birthday at brunch. 

I think you've proven over and over to Dad and I just how brave you are.  Sometimes a tad bit spoiled if you ask me.  LOL jk. But I also feel well deserved.  You are rock steady when it comes to commitment, and I can tell you that trait is something honorable in the later days in life.  For yourself and for your family. 

I know these long days in the library right now seem to push you over the top at times, but Kali, it's super rad. I know you've had to wait for me to respond because I'm busy at work, or you've tried to call and I'm in the middle of wrestling someone from the doctors office on the phone.  I thank you for holding on with me. 

You've weathered the storm on your end of the rainbow.  Always, always, ALWAYS leaving ME encouraging notes.  My fridge is adorned with all kinds of love from you because you genuinely have a kind spirit. 

You are still trying to find the way here in life, and I'm quite sure you don't even think so.  But I see it. 

You have mountains in front of you.  

Finals.  Papers.   Just those two words haunt you.  But look at me, in my eyes little sweet darling....

YOU are doing it.  You are proving to us what we've worked hard to provide.  

As much as I can't wait for you to come home for the summer and make your room super messy and add hair to our bathroom floor..kidding-

Truth is, I can't wait to kiss your cheeks.  You make me proud Kali. Remember to keep you first. Study hard, push those little tiny rocks onto your mountain.  Because you can.

And we are here waving our "proud" banner cheering you on. 

Yee....flippin' HAW!

Get it done! 

Kali, Bianca, Madison and Kaitlyn 2016 Stagecoach- CSUSM-LMU-UCSB Beauties...

You make Dad and I proud Kali.  

xo

Mama

---------------------------------------------------------------------------------------------

A side note to Sumaira in London.  My dear friend, going through the same sadness and panic mania as I have here.  Sajjad a week behind Kris.  It's amazing to think on this Earth I have a friend holding my heart, struggling too.  It's something you can't describe.  My hugs are endless to you sweet friend.  Just reading your messages to me I smile. I cry.  I nod.  I get you. 

I hope to hug you face to face someday.

This morning offered a manic me, weaving in to the pharmacy navigating every single stomach medicine/syrup concoction I can for my boy.  He's battling thrush still, along with stomach aches and nausea to make a human want to give up.  I've left messages for three doctors, left emails, and now beginning my punch in the throat of changing places back to City Of Hope.  I'm a no bullshit type of girl when it comes to my kids. 

And if you can't return a call, or help me help you or him....

Beware.

And Pray. 

One of my best friends Kyoko reminding me that tomorrow if Friday the 13th, and FULL MOON is staring at us.

Careful friends, and smile at the bullshit. Or you can join my cry baby train, and just cry.

And Pray.

Happy Thursday-  

The Mama Lisa

On Gratitude And Guilt

So I wrote a little blurb yesterday about my wah wah mode of "floating" away....

I kind of chuckle when I think of that term.  But if you've ever been through any sort of trauma, you might understand.  A friend of mine Beth whom had a transplant almost 7 years ago...(correct me if I'm wrong Beth...) unexpectedly texted me on my drive home last night.  Funny thing, I was listening to Adele--->mistake.  And was crying *shocker*- (The song Remedy is Jens song for Kris which is just so true for them, she's been his rock)

My reply to her was probably something she wished she wouldn't have hit that little envelope looking doo-dad "send" button on her cell phone.  But because the stars and the moon were lined just right....

she must of felt I needed her.  

I went on to tell her my grief. That I've never felt so weak. I literally physically hurt.  And cry too much..and blah blah blah...I pulled to the side of the road, because that text was like emotionsonsteroidscrymeariver.

And ain't no stop light long enough. jk.  well, not really. #sinner

I mean seriously I'm begging for Jesus to take my wheel.  He has my back...more on that later...but you guys.

Her reply to me was something that helped butter the toast for me. That huge blanket tossed onto my shoulders. I. AM. NOT. CRAZY. Imagine that. lol-- Mike (her hubby) went through the exact same feelings.  The same deal. 

Shit gets real when you try to move on through a storm and you realize you might have lost things in the wake. Like parts of mannerisms. Friends you want to call. Not text.  But call and say thank you. But you didn't. Or haven't.

Family that stood taller for me than I ever imagined they'd even care to do. 

Best friends that texted me daily.  Sometimes not getting a response.  

Calls I never returned. 

Cards that would arrive after a long day at the hospital. I'd open, read, and sit on counter, moving in robot mode. Shower. Bed. Kitchen. Bed. Shower. Sometimes texting a thank you. Sometimes not.

So much love from my fellow mama warriors.  Something only moms get. Dads too, but its that mom thing.

A neighbor that did more for me than I ever ever imagined she'd have the strength to do. 

There's an incredible amount of guilt.  I can't express where, how, why....or what.  But it's riddled me.

To know that I'm not the only one who has felt this way.  To know this is normal?  To know that crying every day is okay.  To know that just seeing my sons name come up on my cell because he's just "calling" me makes my stomach turn.  

I wish I could erase the last 8 months.  Truth is, I know we are blessed.  A donor in Germany that adds to my sick guilt because I don't want to wait 2 years to meet him.  I want to send him love, and letters and most important pictures.  Of my kid.  Of our life.  Of what he gave to save my son. 

Guilt. 

I want to help others.  Wherever I can. 

But right now, I have this incredible guilt of not thanking people.  The hardest this year was receiving gifts on my birthday.  I would get anxious the minute I saw the gift bag. 

I know I sound a mess. 

Last night I tucked away early.  Safely next to Bill, where right now is my safe zone.  I had an early morning to spend at the lab for myself.  My yearly doctors appts totally past-due. (I'm paranoid to know anything in my blood right now -shocker lol)  

I wake early, and I pray. My prayers seem to ramble the same tune.  I pray and pray and pray and it's just a good feeling for me.  I prayed for easing myself into the day------->without coffee-OMG-I daresay that's like superhero alone. 

No coffee + Sloth Mama = Miracle.

I arrived at Kaiser, front row parking, where a chicken little like me didn't even want.  I would park a mile away to delay those silly labs. HA!

Walking in, I receive a text from my boy.  "Mom, meet for breakfast?"  Funny thing, he had no idea where I was.  

I would be in and out within 15 minutes.  As the guy was pulling blood he asked what my plan was for the day as I cowardly had my head turned with my hand covering my eyes like a 5 year old.  HA-

Um...just work, as I released my cheerful side smile.

But first...

Breakfast with my boy. 

We dined, and hugged and chatted and caught up. He tapped me on the back as he walked up to the seat where I had saved us a spot, and said..."Mom, I haven't seen you in like so long"- I thanked him for breakfast and told him how much I miss him and hoped to see him soon. Off we'd go in two different directions...he trying to move on in life, while mama tries to pull it all back together again. So badly trying not to blurt out "drink more water honey" and "be careful making a u-turn right here"-  Silent.
And a thankful smile. He's still with us.  With me.
Grateful.

So that's me for today.  Happier than I was yesterday, but praying hard that Jesus still holds the wheel as I navigate.  Through something I can't even describe.  I thank each of you that have been patient with me. 

Days where I don't even want to leave my house, but I have to. 

Work that I have to keep moving. I can't stop. I have to take care of customers and navigate through many things I've managed to do throughout the months.  Pushing through each day, with each employee and each customer. 

Gratitude is something I hold dear to my heart. I always have.  I wasn't raised a material girl. I was raised and shown love in a different form.  Money does not bring happiness, yet churns evil. 

The kindness that flows from people is what fuels me. 

I'm sorry that I might not have called you back. Or sent a thank you card. 

I am grateful. 

For you all. 

To Bill.  Thank you for being my rock.  For always just smiling through the tears with me.  You will wipe them away and hear the same story over and over.  And still just be still. With me. 

Never thought I'd walk this journey.  Right now, it's not fun- It still hurts. Bad.

Kris goes back next week with just "follow-up" appointments right now.  Which is just rad. 

He still battles gut issues.  They aren't fun. 

I still manage to navigate through pharmacies like a wizard.  Making enemies along the way like a boss. 

But when it comes to saving my son, you better watch the f out.  kidding. 

Well, not really. 

And this picture Bill's sister sent me on Mother's Day?

 Perfection.

It's perfect and I love it.  

Happy Hump Day. 

Love hard, and don't take today, yesterday or tomorrow for granted.  

Or you can live by this-

Dive bars for the win.  Thank you Shelllllly!

ps.  For those families that follow me, while in a transplant journey, or post transplant, or pre-transplant...
these are my own feelings, and everyone is different.  Whether you get my vibe or you don't. Just know, I think we're gonna get through it.  One. Day.  At. A. Time.  #warrior

This Mama Lisa