Where was I?

Well, after letting steam out of the tea pot Sunday night, I woke refreshed on Monday. Our trek to City Of Hope easier than I thought. In the realm of getting him fed, dressed and into the car...peach.
Arriving there with no where to pull curbside to get him onto a bench to wait for me, another story.
As my Dad said, "don't fuss with the drop off grab a wheelchair and be done with it". Part of me still trying to let him get some strength in those legs, and walk. At least a teeny bit.

We'd get in, called pretty fast and soon he'd be getting labs drawn. Once labs are done it's the long stretch down an elevator to the doctors office. By the time we arrived to sit, he was exhausted.
Calling us back soon, his vitals showed stable. BP, weight(hadn't increased, OR decreased) and no fevers or rapid heart rate. Kris still suffers from some sort of post traumatic syndrome there. Something Bill and I have observed. His original doctor has been on leave and so we've come to know our doc. When our original doctor walked in, my heart was full, yet my soul was frustrated. The thing about this process and most important is the relationship you build. Things you like, and things you don't. Things the doctor begins to know about you. Personality. Physique. Attitude. Coloring. You get my drift, right?
So our doctor starts to question why he's so pale. Why he lost weight, and why his counts were so wonky. As I'm staring at the screen reminding her to refresh the page, it was still showing March 10th Counts. To which she chuckled. And I didn't.  *Welcome Back*...[insert rolling my eyes secretly] His counts on Thursday weren't the best. But had jumped a teeny bit. WBC up to 2.1 vs 1.8. Hemoglobin stable and platelets dropped substantially. She began to check his mouth asking how his hydration was. All fine. This dude ate more food all weekend than he has in three weeks. I cooked all huge homemade breakfasts', lunches and dinners.
What she couldn't see was the stature of Kris from Thursday to Monday.
She'd soon arrange for half a bag of hydration. And more to evaluate on his blood work.
Before doing so he made it to the bathroom to puke and almost pass out. Both of which needed to have some breathing to get through. Again, his soul is panicked by worry. [That bathroom ordeal was bigger than I'll share here for now, but on the way home I reminded him of a quote I read recently "If it isn't funny now, it will be in 5 years".

His nurse brings us the wheelchair, and we'd head up to hydration for a nice afternoon refresh taking only an hour. I made a couple important medical insurance phone calls for his prescriptions-----------------> remember me and those pharmacy techs mind wrestle over the most important meds more times than I'd like to admit.
And the one med (tacrolimus) that I've fought long and hard with Kaiser, to PLEASE keep it in stock...staying awake at night worrying they'll run out. It's what saves the lives in BMT.

Anyway, I digress. I get him home and as I'm pulling into the driveway I realize I should start his Passat, and his VW bus to keep the batteries charged. He nods, I get him tucked into bed, grab my phone just in case. As I'm starting the rumble fest bus I see the famous 626 area code. Quickly answering and I hear "Hi Mrs. Stahl, it's Dr. Farol" I quickly fire back.."Hey, we missed you today...what's up"! He laughed and apologized for not transitioning us correctly...etc. to soon tell me to NOT give Kris anymore Tacrolimus for a couple of days. The lab called HIM informing it's too high, and is probably the culprit on platelet drop.

I'd soon pick up the order that I so pushed them hard for. Reloaded his med tray for the week.
Checking it three sometimes four times.
Feeding him another smoothie. Filled with Real Vanilla Bean ICE cream and peanut butter, chocolate and organic frozen fruits, a banana and milk. He is an eating machine.
His nerves always rattled by the time we make it home.

This morning I juggled a couple hours of work, more cooking. Grocery shopping. Feeding. And list of praying. It's so hard as a mama to navigate through work related things, or even taxes, and college stuff for Kali when he's not feeling well.
I can't put into words of the energy I use daily of just taking care of him.
The unknown. The tomorrow's. The yesterday's. The constant fear. I sleep with both ears open on mom mode. I wake every night, all night with deep prayers laced with sadness. Fears and tears.
I wipe things down like a ninja. I glide in and out of his room ten times an hour. I do laundry I have never cared to wash, because nerves get the best of me.

I know he's gonna keep pushing. I have faith and I keep swimming.
Today while in line at the grocery store Kali sent me a picture of the inside of her gums, to which looked like a cyst. Explaining that we might to get it checked. And as I zoom in, and over analyze it just makes me want to poop.

You know, the over thinker. The one that realizes her children aren't exempt from bigs things. Little things. Scary things. Devastating things.

Life.

I just keep praying.
And searching for the best of the best to help them get through.

And sometimes....

Sometimes you just hope you can keep going.

Pray for Kris, back on Thursday with "our old doctor" that kiiiiiinnnda.....bugged me.
And Friday for a scope down into his gut per his Dads request to rule out GVHD.

One step closer to better.

At least that's what our family prays for.
I'm sure you are too.

Big love, don't give up!

This WARRIOR Mama Lisa Lynn over thinker!

60 Days

Or hello TWO month old Kris!

The first month rolling along with the energy from Prednisone, and counts raised to the levels our doctors wanted. And expected. Soon, he'd be told the process of taking steroids away, plus adding Valgancyclovir (gnarly monster) would most likely wrestle him down. And that it did.
The chatty outgoing life loving Kris, almost came to a stand still with food. No appetite, no food, pounds lost. What started as our hovering, pushing Ensures like they're the newest craze in the hood, to threatening him with "telling his doctor" kinda kidding, but you get my drift. As his doctor said on Thursday..."YOU MUST EAT" and anything with mass calories. On Friday I loaded my fridge with all things "calories". Keeping things still in my organic path because I still can't buy otherwise...but you get my drift. I serve him at least two, sometimes three shakes filled with organic vanilla bean ice cream, banana, chocolate syrup, peanut butter and frozen organic blueberries and mangos. Switching things up as requested. He's eating one quesadilla a day, a grilled cheese with cut up pickles on the side and navel oranges cut in cubes. I wake him to snack every 2-3 hours.

During the day he gets up, showers, and sits in the living room, or on Saturday on the front porch at my house.
They have their life in LB. Their room. Their cozy huge bed. Being home with me after two years wasn't where his heart was after discharge. Until realizing the med changes, appetite loss, physical state of the body, he needed to be with Mama. (To the comment makers out there about him out and about feeling good when he got home, and doctors encouraged him to get out and get strong...this IS NOT the manner of orders of his body withdrawing from steroids, get facts before you blab-Thanks)

One thing was really sweet this weekend just watching Kali and Kris converse about school. About how he's feeling. How she didn't really know just how weak he was. Figuring out this path, and pages

in life. As we sat in the living room, our mailman delivered the mail, and soon we'd open a letter from
 our MUD (Matched Unrelated Donor) office. It was a letter from our donor in Germany! As Kali and
I began to read it to Kris our emotions took over, and we both had shaking voices and tears. We can't meet our donor or even know his name for 2 years. One thing in question was whether we'd want to meet him. Same goes for him. I was amazed that his heart was full, and he can't wait to meet Kris.
He refered to him as "my brother"- LOVE!

This journey hasn't been easy. The process is a harder path than some people can only imagine, and yet not have to walk through it. Something I've learned along the way, people have their comments. People have their beliefs. People (religious ones) pass judgement, and ignorantly make comments when they have absolutely no clue of the days and nights that WE and most important KRIS has endured.


They assume their thoughts as their own with no experience in this field we've become unfortunately experienced in. People thrive on watching failure. People push judgement without taking a long stare at themselves, or their family issues. --->Because who wants to air their dirty secret filled laundry
hypocrisy lined religion, when they can pass judgement or half hazardly comment on something they have no right to.

It's what makes this Mama Warrior Roar. I'm not one to poke at, and so I guess it's a gentle reminder of "remember you never know what others are going through" and the comments of what
"YOU"think is right, or cause for change. Most of the time, you could possibly be wrong? No?

Do I pray? Yes oh yes I pray! Throughout my waking hours, and all through the nights I don't sleep, I pray. Do I pray for my son, and believe he is being cared for by our God? Of course! Do I bust my
ass to make sure he's covered in health, medicine, doctors, and administration things that would blow most people over? Yes. Yes, I do.


Does Kris feel great, and feel awesome like most of you since August 2015? No, he doesn't.


Does he want a normal life and body back? Does he want hair? Strength? The strength and happiness to show off his girlfriend? Does Kris want to relive a life he once did? Yes. Yes, he does.
And while folks pass judgement and make their hypocritical comments. Stop for a moment. Not a second, but a good long moment and think about the hell he's been through. Days I would never wish on my enemy. As a mother, and as a son. We wouldn't.

And yet, we move along. Faith. Love. Friends. Family. Doctors. Science in medicines. God.
God knows. Its my power to believe in. As my sons warrior in this battle.



Don't pass judgement friends. Take a good long MOMENT to check YOUR checklist of the what-ifs if this should paralyze your family.

And remember, I have plenty of faith, family and friends. Plenty of non-hypocrite loving, and nonjudgmental friends.

If you care to understand Kris and his path, it's best you get to know him. And his medicines. Might show you a day in the life after transplant. And the 40 pills he takes a day. Learning to duck and dodge the hardest fight for his life. Scared each week, Monday AND Thursday to hear good or bad news. We discuss med changes, heart rate (which initially runs high because hello nerves/fear), we talk GVHD which is most common in unrelated donor recipients. We discuss stomach aches, and scans. We discuss weight loss and weight gain. We discuss long term and short term. We add meds and take some away. We arrive and depart full of gratitude because we know this path. He's still with us to talk. To share and to love. Just as he's always willing to love you.

As for me and my home, we just can't wait to see our son healed. And back in this hard thing we call LIFE!

Pray hard my friends, love harder. Because love is what will keep us together. Evil never wins.

Pray for that at church next week. I'm sorry, my plea for redemption lies in the four walls in my home. Or in my car. Or next to my son bedside or hospital bedside. I know who has our back.
Thank God, I have Him. Because nothing will go to waste...that's for sure!

Love,
This Warrior Mama Lisa that is a tad bit pissed over HYPOCRISY--and "comments"

Have a super beautiful Monday! Ours begins pulling into City of HOPE! But first, pray I can get this dude dressed in layers, and out early and on time with the spring forward-

BIG LOVE!

Coming To You Live..

From my bedroom. 15 feet from Kris'. A place where he spends the majority of the day. After spending the entire day at City Of Hope yesterday hooked to a bag of hydration, he landed home. And weaker. The weakness didn't come from the body, although losing over 45lbs in the last 7 months, it's only a given that he's weak. When I arrived home he was sitting on the couch. As I was unloading groceries he sat watching me, and would give me his little side dimple smile. It wasn't until he began to speak did I realize....hmm...something's wrong. Hearing Bill and Kris' side...he was utterly exhausted! He sleeps about 20 hrs a day right now...so the trek throughout that hospital pretty much did him in.
As he asked me why the food I was cooking was so loud (sautéed homemade turkey meatballs in olive oil) I said "Honey, do you want to lay down?" His reply...I'm okay mom, I'd kinda like a bite of pickle.
After a couple of bites he'd ask to head to his room.
His counts are at 1.4. His platelets hovering in the 120's. Losing another 2 lbs.just this week.

My warrior mode in full force. I must force feed you. I must monitor output, and input.
Finding out he'd fallen at their place in LB right before his Dad picked him up for doctors.
Bill and Kris waiting to tell me, knowing I would freak. His bony side bruised.

I made my way back to the pharmacy this morning while my sister came to sit and hover.
Shaking that place again, because they NEVER have the full quantity for him. Three meds he takes are very important. They are keeping him alive. And yet, VERY expensive. And so they don't stock them.
As I made my way back to the rows of seats to wait for his name to "Lightup on the board" and realized that things like this, and explaining over and over to workers are making me a hard soul person. One I'm not proud of. Both clerks I dealt with today crawled so far under my skin. And yet, I calmly explained the process. Carrying my summary. Asking for the pharmacist. Smiling through the shit storm. To finally lose my cool and aggressively explain my reasoning. My full name. My number. My title in this life. The meds must be ordered and be there by Tuesday. No later. We spend hundreds of thousands of dollars on our insurance between our family of 4.
Tacrolimus and Sirolimus and acyclovir are key factors to keep this mom calm. Order it. Call me. Bye.
I left there with my three bottles. Hauling ass to another pharmacy. Losing my cool again.
Finally pulled back into my driveway. My sister sitting here. On my porch. Watching her only sister navigate
through fear. Through strength. Through a makeup-less teary face.

I would wake him back up to eat a little more. Sip water, Ensure and two more meds.
I was standing there in his room while he was sipping his little Dixie cup water and remember
standing in his room as a baby with my sister after we'd hear a peep in his room, and we'd walk in there receiving that little happy smile. The arms up to pull him out. Smiling at his auntie and his mama. That little smell of his formula stained cheeks and his binkie in tow.

To now, we hover.
To eat. To thrive. To build up from the pit he's in.
It's raining right now. He's been back to sleep for a while and so I head back in for a full glass of water and sips of Gatorade. Trying to get creative on what might sound good for dinner.

The rain is so good. For our Earth. For my peaceful home that cries for healing. For my cozy black sweatpants with the hole in the crotch, but just amazing softness.
My pandora is playing my favorite BonIver. I'm meditating. I'm praying. I am gonna do whatever I can to help him.

Kali drives home tomorrow....and his last words before he fell back to sleep..
"Aww that's awesome Mom, I feel like I haven't seen her in months"

Me too Bub, me too.

Have a weekend filled with peace my friends. Never take life, and health for granted. Ever.

Forgive and move on.

If you can...leave your someone special a love note-
I watched the beautifully graceful Mrs. Nancy Reagan's funeral...and how about their love letters you guys?! Pure beauty. And their pictures? Oh my....

Big love,
This Mama Lisa

The Timing

This morning Bill took Kris to his appointment.  One that is standard.  First stop, labs.  Second stop, Doc.

His white counts dropped a little.  But most concerning, he lost 2 more lbs. 

When you're dealing with such a delicate guy, those 2 lbs are alot. 

They'd soon be told that the best scenario would be some hydration.  Hooking him up to bring him back up from where he might be.  Where that is, we really don't know.  Bill just really emphasized with the doctor that "he isn't eating"-  He is drinking ensures.  And he is drinking water.  But food.....food is not doing well in his regime.  And so he's currently hooked up in the infusion center.  Bill hoping that he'll feel much better when the flow does it's thing.  

Part of me continues to believe it's all the meds. While the other believes it's such the long hard process of BMT-

Either way, my positive vibe is losing it's grip, so I lean hard into the cell phone speaking to Bill as he eases my gut.  Expressing this will make him feel better.  He also pushed them to scope his tummy at our next appointment to eliminate any questions about GVHD-if so, well then treat it. 

He's been pushy enough to even ask why his hands tremble so much. Something I've noticed, yet never brought up.  Doctor expressing, he's weak.  He's thin. And he's most likely cold. 

And so the day is how it's supposed to be. The only thing is, my mind is blown for the day.

Payroll, taxes, paper work, and nonsense speaking customer service. Gone.

And so I pray.  And smile at whomever I can.  

Bugging Bill by phone each 30 minutes. Which sucks for him.  But....

"When Mama's happy, everybody's happy"

More like- Putting the pacifier back in my crying mouth.

Any hooooo....

I called my Dad last night on the way home.  He started taking acupuncture to stop smoking cigarettes, along with curving some anxiety he's suffering from. One thing you should know about my Dad. He's a tough ass guy that put us through hell in his drinking days.  He'd fight anyone, and anywhere ONLY when drinking.  No one crossed his path while drinking with an attitude, because he'd want to beat their ass. And, he'd turn into a rockstar after the 3rd beer.  Our house was always filled with music.  And loud.  But only if he was drinking. 

As he grew older, and had two choices to make.  Lose Mom, or lose alcohol. He lost alcohol.

He gained heartbreak and guilt. Lots and lots of guilt. 

Guilt that I personally wrote a letter forgiving. At least on my behalf.

He's always turned to cigarettes when he's stressed. 

So the vicious cycle turned and turned.  No cigarettes.  Anxiety built up. 

He has never been able to kick the 2 pack of cigs a day habit.  It's awful. 

If you ask me, I'd say why worry about that shit now. You're almost to the 70 mark.  If it makes you happy, and you haven't been beaten down by cancer, then smoke on. 

But....lesson here, it could affect my Mom.  Their life. Financials.  Married life. All of it. 

He was brave enough to take on acupuncture. Which is kind of hilarious to me, because I am my fathers daughter. I'm made up 80% of that man.  Needles? Hundreds all over my body?  F, no. 

But....

It's working!  He loves it.  He said he actually fell asleep over the weekend at one of his treatments. 

And so for that, I am so happy.  

I began to sob at one point telling him how shitty my Tuesday was. How all I could do was cry.  Crying like a baby.  He just listened.  He said he understands, and wishes he could do something.  Reality through the phone as I drove along in my car with that blue-tooth with all speakers hearing a man that I protected when the world was mad at him, to now try to protect me 400 miles away.  I can't change circumstances right now because things are just what they are.  They are two parents who won't change.  Just love me. 

He said that I've always been strong.

Sure shit enough Dad, you got that right. 

He said just keep doing what you're doing.  Everything will work out.  When deep inside, I pulled into my driveway as we hung up I wished I could sit across from him and let more out.  But with my safety barrier of a home waiting for me.  Those 4 walls. That smell of home. The home I made.  For my kids and myself.  The home I've protected two kids in.  Learned many lessons in.  Loved hard in.  Fought hard in. Safety. Home.
Right where I have always landed. On my two feet.

This morning Bill picked up Kris, headed for City Of Hope.  I've been the micro-manager.  The one that basically hauls a baby bag with all things "Kris" and safety when we do appointments.  

Bill took him last Thursday where he could hardly walk.  Puking the minute he got home.  

They're back at it today. 

And as much as my heart breaks because I want to make things better, and do it my way. 

It's the man that loves them too.  That walked into their lives when they were younger.  That loves them.

Was told he lost 2 more lbs.  That he needed to be hooked up to IV Hydration for two bags.  

That his white counts dropped a little. Taking one med away, adding another.  Same thing, different week.

Changes here, changes there. 

I am sitting at my desk, organizing stacks I've over organized twice. The nervous Dory energy.  Flowing. 

Hair topped up high in a bun.  Tears have stained my cheeks again.  Prayers began. 

Employees asking me "How's Kris"-  One young feller I hired a couple years ago coming over to my desk to offer a hug.  Sweet dude. 

Life.

Sometimes it's fucked up. And sometimes there's rainbows and butterflies. 

Thank you God for the chance to get hydration.  A safe car ride with the man that loves him, and loves me. 

The Dad that called Kali this morning to wish her good luck on her mid-term. 

Sitting here at my desk a fellow would walk in asking for "Lisa Stahl"-  

"That's me"-

He turns to grab these...

 My first instinct...-From Bill-?

Tearing the envelope open to read-

"Let's hope this will make your day a little better-2 Trees will be planted in your honor by the National Forest Foundation"- Love, Mom and Dad.

And to this I say, wow. 

Timing.  

Keep positive vibes and prayers filled with hope and love to my boy. 

And to me for strength.  I'm tough.  But I am weak. 

As I texted Jen earlier.... "Let's look for sunny days honey." --the girl that would love to wrap her arms around her lover and just kiss a good long loving kiss, but can't. 

Let's look for peace and hope. 

Especially during days like these...

Happy Thursday, let's look for beauty-  Like the flowers blooming around us.

Smile, and keep swimming.

Hope Heals. 

Love,

This Warrior Mama Lisa

 

When We Look For Sunshine.

This morning I woke up feeling like a fresh restart button had been pushed.  Not that the fears are gone.  Not that the silly Lisa who wants to jump back into the game of fun is back.  Because I truly don't think she'll ever be completely back.  But she's here.  Fighting fear with her punching gloves. Working.  Loving. Doing. Cooking whatever will go down even in spoonfuls....And praying.  She walks around in a haze some days, and others, she just keeps moving.  

I kind of feel like Dory on Finding Nemo.  Frantic.  And moving. 

Another day, another chance. Another day to work.  Another day to hover.  And of course pray. 

A couple of weeks ago my parents sent me this picture of their wild peacock that lives on their property.  He disappeared for a couple of months.  Causing little pangs of sadness to both of them.  It's creatures like this that make my parents serve a purpose.  It's walking out in the morning to chat with "Peakie" as they call him. 

He, flaunting his attitude, and staring at his lover (himself) in my Dad's bumper, to fluff up and show them who's boss.  They've made him a little bed behind my Dad's truck because this bird believes he has a partner, which is himself.  In that bumper. Bumper and "Peakie" = Love.

He returned back. 

As if to say..."Hey....sorry guys, I'm back...and look at me now"--

 When I received this text, I instantly smiled.  I mean, look at this guy.....

So handsome!

Natural beauty.....living up in the hills of Amador County-Coming and going as he pleases....haha...

Moving forward.....I read this last night....and wow. 

 

. 

 

 

Happy Wednesday.....Keep looking for sunshine...and wellness--

Be safe, and love hard...

This Mama Warrior Lisa

A Shaded, Guarded Heart.

After a slow, quiet, peaceful weekend in.... Monday morning didn't hand us the option if we wanted to leave the house or not. Even with that gnarly thunder, lightening and rain.  A little token of truth about me- I'm still petrified of the sound of thunder.  So much so, I put jeans in the dryer and turned my heater on so the sounds would help drown out the torturous sound of it.  I AM A FREAK. 

At that point I was making "walk-by's" Kris' room to hear any sound of movement.  Hoping he was awake to feed and fill with meds.  Listening to rain fall hard against the side of my house I kind of thought "well hellllo Monday...."

On Saturday we all stayed in most of the day. Bill worked. I cooked all morning, and mid afternoon I headed south.  For one, Kris and Jen were stuffed in a cuddily warm safe room at home, and I had the time to clear my mind...and spend time doing what I love most, shopping at my favorite Goodwill on Beach Blvd in HB.  It's called Classy Closet- If you live nearby...again, drop everything. And go.  If you're not into that type of thing....welll...whatev.  

We can't be friends. 

jk.

I lucked out...finding 3 pairs of super cute, name brand make your butt look cute jeans for $30.00, I walked out with a grin so big it showered the sky with my own sunshine...texting my friend Mary-fellow GW lover- showing her my loot-

Floating back home down PCH with my latest and greatest....waiting for Bill to come home.  

Kris still feeling overall yucky but trying hard to pull it together.  Arriving to sit with us for the UFC fights.  

Just being together and getting out of his bed.  As his doctor says..."keep moving, even if it's just a little bit"

A cozy night in watching an upset in both those UFC fights.  Funny, I never have been into this type of fighting, but that was one heck of a night for fights.  At one point, my thoughts wrangled through the what if's. Like how good it would feel to tackle something and fight it down to the ground.  At times, I feel like I've been tackled to the ground, and the fight for life to get back up.  That's what it reminded me of. 

Usually Bill cooks breakfast for his Dad on Sunday's.  This Sunday he offered to take me to "brunch"-  We aren't brunchie type of people, because we can't eat that much in one setting.  But we did decide to head to Urban Plate in Irvine- A place that Kali took me to in Encinitas.  Farm to table.  And amazing.  

We'd arrive, order our food.  Take a selfie.  Sending one to our girl. 

We send ours, and she sends hers....

In "Perks" coffee shop studying and doing what will make a difference for herself one day. 

Commitment.  Tenacity.

 

We spent a quick 30 minutes there at that farm to table goodness place... and bolted right back down the highway home.  Instinct telling us to stop for one overpricedtoosweet margarita at the new Pacific City in HB.  Enjoying the time together, alone.  Something we both still enjoy.  Being alone. Together. Staring at the ocean, and smiling at eachother.  Breathing through the storm. 

My Sunday's still offer that nervous, planning and jittery feeling.  Still the worry of Monday.  Still the worry of trying to swallow our new life.  And new set of plans.  

The life we were all handed. 

And soon Monday reared its head. 

As I do.  Get up.  Pull up my warrior boots.  Pull my hair back. Poor my coffee.  Sit and pray.  Texting Jen to drive safe, as she lands in Mission Viejo at 630am, with a storm a' brewin.....

 

Our trip to City Of Hope had his childhood bestfriend sitting next to him.  Going along for the ride because he'd been taken off the job due to rain for the day.  

A friend that is praying for him.  Rooting along.  Even when he was so weak, and tired yet trying to carry on a normal conversation. Being a normal guy. In a normal world.

Driving home soaking up the sunshine.  Driving two dudes home that watched each other grow into men.  To go through girlfriends, heartache, good times, party weekends, silly things that only they'd know. 

Driving them home in silence because Kris was too weak to carry on much of a conversation, not to mention he talks so quiet, Corey could hardly hear him.  

And yet, he still smiles.  

He's still polite. 

He's still gracious we are with him. 

Arriving home with the warmth of home.  The safety of protection again. 

And yet, not really.

I began to unravel.  Feeling it in my spirit.  My soul.  Tainted.  Realizing that forever and ever I will never be the same.  I will never feel the hearty life laugh.  I will never trust the universe from cancer.  From life and death.  We will never be exempt from heartbreak.  That being a mother, and a hard loving one will never keep us safe from this nightmare. 

I can't control what will happen.  I can control meds.  I can control assholes that are rude to me,  or gosh forbid my kids. But I have no control of this.  

Even if at the pharmacy where I was treated like a piece of shit, feeling the deep desire to grab that chick across the counter, and make her "tap-out"-  

I've always said you never know what someone is going through, and so you know how it goes...treat others as you'd want to be treated.  Needing another new med.  Changing one dose milligram, and asking questions for the other.  Asking to speak with the pharmacists, because one of our meds had the same exact name.  Same mg; yet different shape, and different color.  I'm not an idiot, and could clearly see the manufacturer is different, yet just want some reassurance as I sort meds that save my sons life.  THAT'S ALL!  

Talking myself through what could have been a disaster while dealing with this chick.  Taking deep breaths, because only I know how I can be.  And it ain't pretty.  

Thank you God for allowing that kind pharmacist to come over.  Check it all out.  Look it all up. And put peace in my heart.  

I walked out of that building and to my car with blood pumping so hard.  Thinking to myself....keep the ghetto in Lisa.  Keep it in.  Don't say it Lisa, don't say it. 

I did say my favorite fuck word under my breath though as I sat down waiting for the pharmacist. But that doesn't count.  No one heard.

I'd soon get a call from Dr. Farol as I was heading' on down the road calming myself down---as I see the area code 626--pushing that button on my steering wheel like a game button at an arcade.  It's almost like you can't push it hard and fast enough.

..."Hi Mrs. Stahl, please eliminate one Siralimus (anti-rejection med) from the regime"-  From taking 4 a day to, 3.  "You got it Dr. Farol, thank you!"   

Headed back home to the kitchen table.  Summary in hand.  Med little block of pills in the other.  And pulling one out of each.

Trying to get him to eat the Pastrami sandwich he'd been craving. He ate half of a half. Plus one small gatorade.

Again...the unravel.  I settled him into bed.  Starting a new load of laundry.  Praying.  Sorting. Praying.  Pacing.  Crying. Peeking into his room like a newborn you check on. His little pale face, and closed eyes break my heart.

The one thing I cannot wrap my arms around is this unfair life.  To him.  To not be able to eat.  To laugh with friends and silly things.  To plan a boating trip.  Hearing from another transplant friend that this road is long. 

And not only long, but very very hard.  HE. HAS. A. LONG. ROAD.

He's on a medicine that took down that virus, making him feel horrible.  It's call Valgancyclivor- We're down to two a day, but they are brutal on his body.  We had hopes that the steroids would help a little.  But no cigar.

To give you an idea of what our summary looked like yesterday- It actually looks like this every week. 

I follow down the list.  Highlighting and crossing off as I put them in their M-S place in a large pill square box. 

Here's the thing.  

Right now I feel scared.  I feel as though this rollercoaster isn't gonna end. 

Like when they're little and you're wanting to make things better for them-

You get the notion first thing every morning that he feels worse.  His tummy hurts so bad.  He's not eating. 

We're excited to watch him drink an entire Ensure.  

We're excited to watch him go from his bedroom to kitchen.

Today, I feel broken. 

I felt broken last night. 

I feel broken today. 

I have so much guilt in my soul that my son has to endure this.  There are no guarantees in transplant.

No one said it would be easy.  No one said that life is fucked up along the way.  To him, or to me. 

I handle his finances.  His insurance.  His errands.  His doctors.  His messages.  His company shipping.  

Nothing at all compares to the fight inside of me to keep him going.

I am scared. 

Speaking to my sister for a good hour last night.  A person that knows the paths I've walked.  She knows my strength.  She knows my fighting soul.  She knows why and where I became so strong in this world.  She knows.  And yet all she can say is "Lee, I'm so sorry"- 

I woke in the middle of the night with that haunting ghost sitting at the end of my bed. 

Telling me things like all the what if's.  Things that can happen.  To be prepared.  

Things a mother should never want to prepare for, and yet there is no other choice. 

You look at sunny vacation spots and friends enjoying that glass of wine on a hill top, and deep inside I am so happy for them, and yet have no desire for it, because the material things in life don't count for me.  

Like, zero. 

The desperate part of me wanting to say prayer changes every thing, and cures all. When in reality, it's all part of the process of "Hope"-  

We can all search for answers.  We might not find them.  What we will find is heartbreak.  

Broken hearts due to illness.  Death.  Divorce. Affairs.  Defeat and agony, it's all part of the chapters we open each day.  Each month.  

I'm heartbroken.  

There's no money in this wicked world that would make up for the sadness I see every day in my home right now. 

I turn to those I love.  I turn to those I feel safe around. I am a walking zombie and yet I still try to love hard.

I will do anything for Kris. I will do anything for Kali.  I am proud to be their mom.

I am Faithful.  I am trusting God.  I am praying like a warrior, and yet I am broken. 

I hope you all live and love for today.  Remember to ignore assholes like at the pharmacy.   

Kiss your babies.  Snuggle up where you can.  Smell their little necks if they're little.  Hug your teenager even if they seem unpredictably awful.  Hug them.  Leave them notes.  

Hug your friends.  Be kind to your animals.  Talk to them, and listen to them.

This morning I sat talking to my Abigail kitty. As I stroked her little face, and tears fell, she just stared.

I wonder if she's telling me every thing is gonna be okay....

I am heartbroken.  After all, the only true accomplishment I've taken on with full force and feel worthy of, is motherhood. 

We can do this Kris. You have to keep fighting for us.  For Mommy. 

Big love, 

A Mama with a very torn heart.  

ps.  I just spoke with Kris' doctor, explaining his tummy is worse today...his response is "we're gonna take the one med away on Thursday"-  ........................Thursday....

Which means...."hang on"

 Cancer is one big motherfucker. 

pss-thanks for hanging on waiting for me to post.  As I told my girlfriends last weekend....sometimes I feel like a clam.  I open up, go all day....or week.  And close up.  Physically and emotionally.... 

 

And today....I am a crybaby.


Love to you all.  Count your blessings, and pray you stay healthy....

Little bites.

Well, we made it to Friday. A day at the end of a long worrisome week. One that is part of that downhill drop on this rollercoaster. Rallying around him, all week to pull him home last night with a plan to get things in check. The thing about transplant, crisis, cancer, changes in life pattern is the word "normalcy". We all try to find normalcy. Even during the weeks and days of chemo rounds. We search for normalcy. We all set into a rhythm of life. Sharing duties. Offering good. Hovering in and out.  When your child gets a gnarly virus when they're little, you are elated when they keep food down. Or the fever breaks. Or they get up, and want to play. Both Kris and Kali have both been active kids. Active people. So when they are down, it's already a wrangler vibe in my heart.

When he came home he felt surprisingly great. As I explained in my earlier post, it's all the recipe of meds. Here's the thing- Steroids calm the GVHD. But also allows the immune to suppress even further. So eliminating steroids are needed, yet the body (adrenal system) becomes adapted to them. Therefore when they try to eliminate, his body flopped to the opposite side.
Hearing the news yesterday that "the virus is gone" was music to our ears. Hearing Bill explain the visit was reassuring to me last night.
He waited until I settled Kris into bed. After he puked. After I went through my flurry of fluffing a nest. Laying in his bed miserable questioning whys, and how comes...showering and changing into new warm cozy clothes.
I had a plan. To change the meds as told. Praying so hard as I do. Feeding him one "egg and a basket" with two slices of bacon and an entire Ensure. My soul becoming full as I watched his body accept food again.  His smile as Jen came into his room. A part of love and life that no one else can fulfill...
He kept his dinner in. Sleeping sound and waking this morning to eat breakfast tacos. Still no energy. White cell counts are still low. Next week will be a better week.

Next week will offer more hope. Today is Day 51.
Medicine and hope. And lots of lots of prayer.
I'm stoked about rain. I'm stoked he's finally eating.
Like eight now as he's sipping another Ensure..
One of the thoughts that wash over me daily and nightly is I am grateful for each day we are here. Together. Nothing really surprising me along the way.
Just reminding myself to be ready.

To keep my Mama Warrior Boots ready.

Enjoy the rain. Stay safe and be kind to animals and elderly.

Love hard, even when you feel like you can't.

Happy Friday night to you all...even if it's just full of little bites...

This Mama Lisa

Never Give Up Hope

Virus is gone. So are some of his white cell counts. No appetite. Nausea and vomit. Sleeping like a baby. Frustrated and sad. His Dad took him today. If there's one thing Bill is good at, it's remaining calm. He navigated to the front, dropping a weak dude that can no longer walk long distances. To labs, to his doc office. Hearing the good and the challenging. Virus is gone with a positive tone as he walked into the room. White counts down. So...new meds. Adding three more, eliminating one.

Offering to hook him up down the hall for hydration to which he declined. Bill offering his three cents on him not eating. We will watch and we've changed what we were told.
This picture yesterday was as I made a craving delivery to him and he took three bites.
He's trying so hard to stay strong and positive. But as he said to me this afternoon as we wrapped his port side arm..."Mom, I don't understand why".


I don't either.

But just like last night, I will read my little bible. I will continue to pray. I will do whatever I can to help him win this fight. To earn a new chance. One day at a time.

Faith. Hope. Love. But most of all love.

Just look at his little dimple smile. I've been lucky enough to see it for almost 27 years.
Even during the darkest covered stormy days.

I'm blogging from my ipad. In my room, while he sleeps in his. Both Bill and I wondering when we should do a fly in to make him drink more Gatorade.

Oh, please have mercy on our souls..

Have a good weekend, and pray for this handsome Bubby. Do you see hair coming in?

Love to you all,

This Warrior Mama Lisa

Fun Facts Of Mama Lisa

Here's the deal.

My daily thought process from the moment I realize I am a living human, is my son.  Then my daughter. If I'm keeping things honest.  In that order.
 And it feels like my spirit is broken.  Broken in a sense where I have to push myself to laugh.  Be silly.  To have fun.  As they say "fake it til you make it"-
And that's me.
On a daily basis...
At least once a day, my throat tightens up, my eyes fill with tears.
And then I smile.
And move on. 

A few of you are rather new here to this space of mine.  Well, actually this space of "ours"- In reality it's a place that offers a look into the lives of not just myself, but my family.  My unit. 

And so...you might recall a few things about me.  Some are just down right weird.  And if you are like me, well great.  If you are not, well..lucky you. ha

So, let's lighten the vibe and share tid bits, if you will.
About me.

How many of you like white noise to sleep at night? Like an air conditioner that runs all night.  For me, it's a two fold. I like the cold crispy air.  And the other, is all noise it blocks.  

Only thing is, I woke up this morning with a little froggy scratchy throat.  But.....

I think I snored. 

And hard. 

The crazy part to this, is I CAN'T GET SICK.  I cannot.  

I think I'm fine.  If you saw my regime of natural remedies, and preventatives you'd crack up.  For instance, I drink Organic Burst Chlorella mixed with water, and take Curcumin (Turmeric), and I've never stopped taking my prenatal vitamins since Kali's nursing days.  I drink lots and lots and lots of water.  

I can't get sick. 

I try to get as much sleep as I can.  

 

 

Which is good.  I don't sleep well.  Even when Bill says "hun,you slept for 10 hours last night"-  I really don't sleep for 10 hours.  I wake, sleep, wake, sleep, roll over, go pee, pray, sleep,wake, roll over....and on and on. I sort the craziest shit at 2am.  And so by 5:30am when it's really time for us to wake, because my body is in fact done. It kinda sucks.  But like most of us, we get up. And go.  And appreciate the fact that we can.  That we have jobs.  That we have a roof over our head.  We have clothes that keep us warm.  Or new socks (thank you E...she knows the key to my heart) - 

Any way....a few things about me. 

I hate peas. 

I hate corn on anything, other than by itself. 

I love music.  So much so, that certain songs make me tear up, not from sadness, but the good times..

I LOVE Bad Company. 

I am a very polite driver.  Just don't ride my tail.

I laugh at people whom rally for the closest spot.  Walk, kids.  Walk. It's good for you. 

I love fresh cut flowers in tiny vases from my garden.  

I won't share toothpaste with my kids.  We all have our own tubes, labeled. K-K-B-L

*FREAK*, say it, it's ok. 

I love to fall asleep first, while Bill is watching tv.  I feel safe. 

When he's gone I am a tad bit challenged. 

I still stare at him when he's not looking and am in complete love and lust for him.  

 Still...after all these years he rocks my world...lover face.

My current favorite show is The Little Couple, and Sunday Morning...on Sunday morning-

I love coffee, with organic milk.  Creamers freak me out. 

I love fresh cut grass. 

I despise shopping.

If I do shop, I like to go alone, get in and out and early before germies and crying bratty kids. 

I am still petrified of all lawn equipment. 

I love to see people kiss and hug.

I grocery shop with coupons.  And buy most everything organic.  But love me some Doritos.  HA!

I love to cook.

I love to be prepared for my week.  I'm a weirdo on Sundays.  Wish I would ease up, but still haven't. 

I love all animals.  

I can be very impatient. 

I scroll through Facebook, but never post on my own page.  Weirdo creep. HA

I think it's rude to be on your phone while being served ANYWHERE.  Rude.

Mannerisms are a key to my heart.  Proud of both of my kiddo's.  Their mannerisms are always top notch. 

I love wearing sandals vs high heels.  Realizing I should step up my game and wear high heels.

And red lipstick.  

Together. 

Rarrrrrrr. 

HAHAHAHA! 

Quickest way to get laid? what?

Did I just say that? 

Still laughing!!!!

I have mild panic attacks in every single public restroom.  I HATE them.

I am happily attached and yet undeclared.  

Sent him a text yesterday morning warning him I could ask him to marry him, after all it was leap year day.  

He laughed.  I laughed too. One big chunk of laughter!!!

 I don't want to get married.  

I do want a proposal.

I do want a party.

I do want a dress. 

So...be ready kids. One day you will come to our party.  

We'll call it our "Happily Attached, Yet Undeclared Party"

At year TWENTY-

And that's not far away....
And Bill, I'm sure you are shaking your head while reading this post, and your neck is probably hurting from shaking it so hard thinking, oh my word, Lisa Lynn.
Glad I could help you get some neck work-out in today babes....HA!

I have always, always, ALWAYS been an over worrier about my kids. Now I live with the feeling that something is always about to change or happen. 

I'll go to my ashes with my gratitude for the children I raised, over the money I made. 

I will never ever be a material girl.  

I will be thankful for my roots and soul to be a lover and a giver. 

A kind person. Leaving my legacy as kindness.

Not the richest. Or the fanciest shoe, car, purse or home owner. 

Not me.

I am petrified of cancer.  I am petrified of loss.  I am hopeful.  And I am a prayer warrior. 

I love my friends.  I love my dude.  I love to be alone, and yet lately I don't like to be alone. 

I am afraid of being out and about after dark.  

I am a tomboy, yet a delicate little girl down to my core. 

I will fight for what I believe.  And I will most always stand up to anyone offending or hurting my family. 

I can't stand the political circus going on already.  ew. 

I love wicker over glitter.  And I love neutral colors over neon. 

Update on my birdie, he's still fighting hard.  Doctor called him last night after he got home.  Increasing Siralimus, and Tacrilimus.  Both anti-rejection meds.  Increasing one by two, and the other by one. 

Still on his Anti-viral meds. 

I'm proud to say I have his med sheets, and division down to a science. 

Right down to my wipe down and prep routine. 

THIS mama, has him covered...

Changes, but hopeful.  Smiles, and taking it real easy.  Losing more weight but trying to eat. 

Just one day at a time.  

Wishing you all a beautiful Tuesday. Happy March 1st!  Here's to LOS AL Boys SOCCER owning today's game!  GET EM!!!

Love, 

This Mama Warrior Lisa 

"We love those who know the worst of us and don't turn their faces away"

The Fly Zone

Well, Kris made it through the weekend, and in total hazy and lazy fashion, they both managed to stay in and in bed.  She's pulled through like a champ with her wisdom teeth ordeal. Talk about a tough little cookie!

Bill worked all weekend, but not before we enjoyed a night out with our six-pack crew...

I managed to snap two pictures.  But here's a little peak at what this cute little gem looks like...

Habana's- Costa Mesa.  Give it a try.....so cute!  Most important the surrounding stores, like Buffalo exchange...along with Urban Outfitters...Date night kids...date night. Plan it.  Do it.

These swings......LOVE!

 Blurry snaps for the win.  NOT. 

Saturday morning I coerced Bill to finally let me bring in my table we so proudly made.  Gianni hauled this piece of wood from the ocean side in 2014-  

Doing this picture no justice, when you consider it was water logged.  Close to probably 200 lbs.

Living on our patio for a year and a half....Melt my heart as I sent a picture to Kali....and Gianni....

....making something rust when you're inpatient like me is brutal.  Hello vinegar and water and Muriatic acid concoction makers!

 And while Bill was working.  Kris and Jen were tucked away at home

.  Kali in sorority mode out there in good ol' SM-

This Mama went on a bike ride, and landed in our local dive (favorite) bar....

 Laughing as a local bar fly asked me "which one of you is a teacher"-  HA!  ---Dude, I'll teach ya somethin'

I sell fiberglass.  She delivers babies. She sells college clothing worldwide. And she works for CBS studios. 

Let me guess...."You.....drink here every day?" hahaha   Actually it was all in good fun.  He was a cool guy, just scratchin' his noggin wondering why we roll into a place like that on pink, green and yellow bikes instead of Harleys. no.big.deal.   Just hand over the cold beer and peanuts, and no one gets hurt.

 We arrived home on Friday night to the dredgers in full force.  To come back on Saturday and they were pulling mud right in front of our pad.  Cracking me up, because you couldn't even hear music.  Just our laughter and chatter....

Bill and I end our wild Saturday evening by curling up on the couch watching Supercross and asleep by 8.  

My cousin sending me this view of her walk up north....and something we both adore...

 Heart rocks. 

I hope everyone had a weekend that felt full.  Either full of love or full of good food. 

Kris and Jen just got out of his Monday's doctor visit.  He can hardly keep his eyes open.  His body is weak.  His virus is lowered (Thank you God!) 

No adjustments to meds.  So Mama will sit and filter and sort today when I get home from work.

He's also under direct orders to eat, or they'll put him back on steroids.  You remember this can be a problem.

Steroids make him feel good, but open up the body for viruses to attack. 

All science.  All faith.  All hope.  All working on a daily basis to keep him fed and going...

Happy Monday you lovers...

Leave your legacy of smiles, kindness and love wherever you go....because someone ALWAYS needs one of them.

HUGS!

I'm still hovering over my birdie-FLY ZONE....

This Mama Lisa