In Between The Waves

Last week after Kris was discharged from the hospital, we knew he'd have a break.  We also knew he'd have this week with only one appointment.  That appointment (that he drove himself to for the first time) was a port clean, and blood draw.  

Upon leaving and having lunch with his uncle and cousin, we knew we'd just wait. 

You wait for emails, and or phone calls.  From his doctor.

I sit at his desk partially through my day.  Therefore I catch the email alerts of "results" as they come in. 

I also catch "You have a message from your provider"- 

Both differ greatly.  

I have a very hard time opening up results.  For the last two months they look so scary. 

At just about 4:45pm, I shut down Kris' emails, and headed home.

That evening as I was crawling into bed, Kris texted me.  "Mom, I'm gonna go fishing tmrw, leaving at 2am, and will be back on Wed"-

I read the text to Bill, whom shook his head, and we both laid there digesting it.

For me, you know how I feel.  Go enjoy life.  Salty air. Friends. Boats. Fish and maybe even whales and dolphins.  He's been half way to hell and back.  And to have one week before it starts all over again.  I say....go. Go, and be smart Bub.

And go he did.  But not before I reminded him to check emails just one more time.  Just by chance if Dr. Chen emailed.  Soon, he said yea.  He did Mom.  Stating his counts look good. His body has recovered from the last round, with infection creating that last hospital stay.  He said, you can admit yourself for Round 3 either Wed, Thurs or Fri. Latest Monday.

Kris did what his soul felt best.  A few more days of being out in a normal life. Staying salty. 

We check back in bright and early Monday morning.  One week in.  Solid chemo. Along with another Spinal Induction, and pull. Spinal first thing Monday morning, so you can see why Kris wants a break.  

Once he's in next week, he's strong for the first day or so, and slowly, slowly, slowly you watch counts drop.  A body trying to discharge and get rid of the poison.  A son of ours that changes colors.  Sores show up in places you can't imagine.  He stays positive, yet sick.  He stays strong yet weak.

The process as last time was 3 weeks.  One week in, one week home super sick, and one week back because he came down with what they call "Neutraphil Fever"-  Basically counts wipe you out, you admit with fever, monitored around the clock, they bring you back up, and you start the recovering process. 

Blood cancers are fuckers.  And especially when they migrated and took over your bone marrow.  

I still battle sleep and this morning I realized the analogy of my despair.

Have you ever had something you are worried about, and you are going along in life and for a split second you try to feel like everything is okay, and life feels, smells, looks, sounds normal?

And then you wake up in the safe of your bed, or living room, and you look at the pictures that line the walls and you tell yourself, this is crazy.  THIS is fucking crazy-This fight is real.  And it will be a very long time before it goes away.  In any direction.  It's here.  And it's not going away. 

Therefore, while he enjoys whatever salty air he can breathe, I say do it. 

Last night after I stepped out of the shower starting my frantic dwelling of "I haven't heard from him all day"

There was a text- "Hey Mama"- 

Heyyyyyy...

He's at the island. In a big boat.  With good friends. Covered up. With his meds. All his fluids.  Port covers, and lots of smart thoughts. 

Even when I started to remind him of the little things....his response was what I know him best to be.

Mom, I'm taking good care of myself...don't worry.

But I don't think I will ever stop worrying.  

 This is the biggest nightmare I've ever been awake to witness.  Each day I try to make a difference. 
And sometimes the only difference I make is something simple, maybe even unrelated to the C word. 

Research is still extremely hard for me.  His leukemia has a complex case behind it with Philadelphia Chrome-X.  And with that, it makes my research turn to diarrhea. Or a really really bad night.

I pray.  I pray hard.  I'm trying to learn to be alone more. I've had a very hard time being alone these last couple of months.  Something I've always enjoyed.  No longer do I yearn to water my lawn, sitting on my porch.  As my sister says....it's a way for too much time to think.  Then panicking.  

This weekend will hopefully be filled with love, all together....laughing at the good stuff, and wishing away the fears of next.  

Big love to you all,

This Warrior Mama Lisa

When My Birdies Are Happy...

Friday evening Kris sent us that text as he does...you know how it goes...

"Hey mama, watcha think about me goin out on Justin's new boat for a break in ride"

....................................................c.r.i.c.k.e.t.s.

Until I thought about it more.  Salty air, a boat, a good friend, a warm cabin, and a kick ass beautiful Friday evening.

Ya.  Go.

And so he did. 

After Bill and I sat down for dinner that night we both pondered on it.  And both agreed, heck...let him enjoy this time while he feels good. 

Saturday morning we received the same text.  And soon pictures....

 It's so hard to not nag.  You know like I wanted to ask if he had "press n seal" under that shirt on his port area just in case it got splashed.  And to NOT eat any fish.  I have my theories of our waters, and Fukushimi. 

He already knows....so why nag. 

Just sit back and feel that smile with that dimple underneath his protectant. 

He calls this his "Dad hat"-  

Sunday he took Jen out there too, and his response this morning after Good Morning, how'd you sleep....

"Good morning, slept really good mom, I was so tired". 

I bet. 

Meanwhile just south of us down on the beach with her squad.  Miss. Kali was all up in her Sorority gig doing some shoots on the beach. Supporting October's Domestic Abuse Awareness. 

In the views of this weekend for my birdies, I'd say it looked pretty darn good. 

And Mama?  Well, I did more laundry, and side jobs around the house like cleaned out my 80 junk drawers and craft bins because, hello, I am a hoarder.  Someone needs to remind me that I do not need all these ribbons anymore.  And all these little labels, and stickers.  

Right?

Pray for Kris' good counts today.  Labs taken at 1pm, we are crossing fingers, toes, arms, and eyes that Dr. Chen doesn't ringaling-ling.   My fantasy is packing up our little family of 5 plus one doggo and heading out for the weekend before Round 3. 

Sound divine?  Sure shit it does....

As the sayin' goes, only this time flipped around....

"When mama's birdies are happy, this mama's happy"

 

 GOOD POSITIVE VIBES FOR OUR MATCH CALL!

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tmrw...

 

Love, 

This Warrior Mama Lisa

Recognition

In these moments of despair, and a family crisis I am amazed at the strength.  From us.

From him.  For me. For the kids. 

A few things I want to tell the world about this man. 

He walked into my life as 3.  Two young kids that were in need of guidance. Love.  Trust.  And dedication.

The last two months I have barked, cried and shriveled up into a ball over this. 

Like the other day when he brought me my favorite sandwich, but forgot chips. 

Then the next time he brought the favorite sandwich WITH chips, but brought PLAIN BAKED LAYS. ew.

After my little snippy lips let loose, I apologized later letting him know I was an asshole.

Or how he turns the air dial up when I'm hot. From 7 to 5.   And 7 is the coldest of coldest, and right now, I want to freeze at night and rely on my blankets.  Not 5, to kick covers off. So the next morning I make my comments, and he sits in silence understanding me.  Again, later knowing I am just an asshole.  But he smiles and soon we laugh about it. 

Or how about reminding me about the little things at work that need to be tweeked, and yet all I can think of is Kris.  

We walk the walk together. He sees me weep, so he holds me closer.  

He checks on the kids when I am overwhelmed with just trying to make life work, at work. 

He lets me go to SuperMex to get green rice and a margarita just because he knows it makes my world a better place.

He has sat up with me at 3am in the living room, as I lay my head on his shoulder asking "why"-

He asks the doctor questions when my lips freeze because sometimes I want to say so much, but my lip quivers. 

He goes with me back and forth to drop food off to Kris. Whatever and whenever.  He never peeps a word. 

He knows that I am a mama bird, and loves me more for it. 

I've always taken care of everyone.  He stands back, because he knows it's my only way.  Really the only way I ever knew.

He held my head last month and promised me we will get through this. No matter what. 

He lets me drive because I am a back seat driver.  eh em, he tailgates and drives too fast.  

Kris will kill me when he sees this picture, but it makes me smile. Although it kills me to know leukemia was somehow sprouting in our boy. 

Bill is my soul mate.  We found eachother at a crazy time, and have walked some paths that would blow some people down. 

We become stronger.  We say every morning as we hug, "Lets do this baby, we can do this"-

He's the king of programming all things around the house.  You want a nightlight to blast on as you walk by? Call Bill. 

He's methodical.  And I love every bit of him.  Even when he rinses out his coffee mug and leaves it on top of the sink instead of inside.  Or you know, that tap of the shaver into the sink leaving stubbies.  It's okay.  

Because I am quite sure he's tangled in my hair every.single.day.  In your toes, right Bill?

Huge shout out to you lover. My rock.  My soul mate.  

You have filled my heart to the top.  And for that I am grateful.  Kris and Kali are lucky mama is loved, by you.

"Let's do this honey"-  One day at a time.  Until our handsome birdie is up and at em' again.

Happy Friday Fellers.

Play hard, and don't sit on the bench.  

Love to you,

This Warrior Mama Lisa

Wrong Side Of Bed.

This morning I woke on the wrong side of the bed.  And whoever made up that "sayin" is funny.

I didn't sleep last night. Like up and down, tossing and turning.  AND this was with freshly washed linens.
You know the kind that smell like Downey, and the bed is so divine as you pull it back you can hardly wait to lay your head down?  Like that.

All was good until 11pm when I woke suddenly and started the fucking process of why my son came down with Leukemia.  Like why did last week turn to shit and this week even shittier.  Why does he have to go through so much.  At the awesome age of 26 he should be out casting his pole all weekend long. Laughing away with his friends, because he's silly.  Not looking at us deciding on what he can handle food wise because this week everything tastes like soap. 
And wondering when he can get his transplant.  And wondering why his stomach hurts so much.
Listening to us tell him that chemo is poison and it's trying everything a body can do to get rid of it.


But guess what?  He still keeps his spirits high.  Even in that room 4115 that we discharged from yesterday.
He makes me crack up. If you could see the videos he sends us.  I roar.  Kali and I get him. Same with Jen.
One video, and if you follow him on IG it was his lunch.  Mac n Cheese.  He played a little drum solo on it.  I guess it was a little burnt.  But man, I laughed so hard.
Another good laugh was Tuesday night I stood in the teeny tiny bathroom as he showered because he's a fall risk and he had the temp up to 80. Mind you, I had a mask on. As he stood there enjoying that hot water falling on his body, I was literally ready to collapse.  Finally pleading that he kinda hurry...but knowing it felt good to just have water on his back.  He's having hot flashes that make menopause look like a walk in the park.  So flashy that he turns red, and super white.  Sweat drips from his body.  Creating chills that you have to cover him up with.  

He texted me yesterday at 10:30am.  "Mama, Dr. Chen and I had a good long talk, he just left and gonna offer discharge paperwork, if I want to"-
So, I packed my big bag into my car.  Dropped Bucksie off at home, and headed to Le Kaiser'-
Upon arriving he was so happy to see me.  We sat there talking about his discussion with Dr.  Chen and why the purpose of really watching counts matters after those strong rounds of chemo. And that he will let him have a break next week to see if his body gains a little, and recovers a tad more before round 3.

About two hours into our chit chat, which flies by in the hospital.  Don't know why.  I decided to go "hunt down our nurse Joy" whom I had never met.  Asking her if she was maybe done with the paperwork....?  I mean 3 hours had gone by.  Her response "Oh yea, let me just print the paperwork out"-
Here's the thing we've learned about admitting and discharging. 

It takes FOREVER to admit.
FOREVER to discharge.
And you have a shit load of stuff.  From pillows, blankets, shoes, bags of stuff, you name it.
AND more new prescriptions to pick up.  Meanwhile with your weak birdie standing by.

I made a trip to the car, coming back to hear our discharge instructions...etc.
Picked up the meds, while he sat there smiling at me.
Drove him by my house to get Bucksie and some Tea Tree Oil for a sore on his arm that still looks wonky.
By the time we got to my house, he was losing his lunch.  Having to lay down for a second to get his marbles in order again. Sitting on my couch that he did as a young boy, trying to pull it together to just make the next leap home.  We looked at some childhood pictures that he wants copies of.

I took him home, and he thanked me as always.

I received a text last night from him that said "Mom, thank you for all that you do for me, I love you"

I am exhausted.  I am trying to keep things moving.  Some days I just want to stay in my bed all day.

I can't. I won't. 

Pray for him.  He's home.   He's recovering more.  Skinny boy, but we are all forcing whatever, whenever in him.

Next week he'll get a break from chemo, and than we'll stare Round 3 straight in the face.

Have a good Thursday evening friends.

Be good-

  Big love,

This Warrior Mama Lisa

And The Silence Brings.

I'm sorry I didn't get a chance to update here on Le Blog'

Kris was admitted on Sunday morning for a raised temp.  A temp that started at 100.2, rising to 

103.00 by early afternoon.  Admitting into yet another angle of that hospital in a room that he felt best in.

He was so sick. Asking us to cover his face.  Shivering so much it was all we could do to make him feel the least bit better.  Nurses packed him with ice. Administering meds to get things rolling again.

Just what his doctor assumed would happen. Happened.  

No counts.  Not just low.  Just like zero'n out.  

Platelets were brought it.  Transfusions were brought it.  

Puke, and all other body fluids that make for a horrible night. 

It's real. 

It's a fight.  

And  he will win.

This morning after my sister delivered him a smoothie, to which he drank half of "AWESOME" news I tell ya-

Two bites of a sandwich that is miraculous. 

Yesterday as I sat at the end of his bed with my face mask on, he said.."you know Mom, it actually feels safer in here because I know they are monitoring me"-

  Getting through this crisis.  Together.  As a unit. 

 

Pray hard. Love harder.  

Keep human kindness in the front.

  Hang tight while I navigate through more days of blended...everything.

Even when I fail on taking care of everything and everyone else. 

Doing the best I can. 

This Mama Warrior Lisa

Things We Knew

We knew he'd become sicker. 

We knew he'd feel so terrible that nothing we could hand him, or put in front of him would make this mess cleaner.  

Because this fight is something you can't explain, unless you're unfortunate enough to have been through it. 

Or still walking through it.  It's not good. Or easy.

This week included lots of bad nights.  Terrible days.  

A body weak from so much chemo.  A body that couldn't sit up without puking. 

Two parents that do anything and everything we can to help him. Transporting him delicately like a feather. 

Holding the steering wheel, all along thinking what the fuck, and why does he have to go through this. Why.

I've never ever in my life witnessed my birdie so weak. 

But each drop on this rollercoaster I continue to pray.  To believe in him.  In medicine. In doctors. 

Waiting for a match call.  For our next page in this horrible chapter.

This week was not good. 

Counts are too low.  Food is an enemy to his body.  But he is fighting. 

I hope you all have a good weekend doing what makes you feel good. 

For us, it will be loving on our baby.  Whatever he wants.  Like this morning he ate a few bites of biscuits and gravy.  Silver linings.

Peace to you and yours,

This Mama Warrior Lisa

And If You Do Kris....

 Dear My Kristopher, my merkamer.  My bubba-loo.

If you scroll through Mama's blog.  And you find this today. 

This is for you. 

Today, and the last few days have been brutal.  For you especially. 

If I could trade places with you, I would.  You will never know the anguish I carry with me through my waking and sleeping hours.  You will never know my strength and where it comes from. I won't either. 

My Simple Strong Man. My Birdie.

She broke the bread into two fragments and gave them to her children, who ate with eagerness.

"She hath saved none for herself," grumbled the sergeant. "Because she is not hungry", said the soldier. 

"No" said the sergeant, "because she is a mother". 

My calls start to Kris just after sunrise each day. I know his nights are a mess.  But I know and feel he's awake.  He most always greets me back with the most loving text.  His soul wants to protect his Mama, and yet my soul wants to cover him with all forms of protection, love, peace, and goodness. I want to feed him, and monitor e.v.e.r.y.t.h.i.n.g. But most of all love.  They never want me to know just how bad the night was.  Sparing me details because they just want to protect me.  Life and motherhood.  It's a delicate flower, isn't it?

Driving to work this morning our song came on.  It grabs me instantly and pulls me close to my boy. 

Weeping like a weeping willow crying out loud because it feels good. 

I lose my shit every once in a while.  I am angry.  But mostly I am sad. 

But if you see this Kris. Remember, we are behind you. Mama is paving ways that you might not ever see, hear, touch or smell. Do know one thing.  I am moving mountains baby.  I am.

Enjoy this day friends...love on your babies. Pray for Kris. Pray for healing.  And pray for a resting peaceful body.  Tough week.

Love, 

This Warrior Mama Lisa 

Huge thank you to my friends that are my rocks. I wish I could repay you.  If I only knew why this happened, or how I could hand the love right back. Thank you for understanding me when I clam up and only fall into the arms of my rock.  

Almost Two Months

Almost two months in, and I've been schooled in more ways about Cancer.  And Leukemia. And doctors. And nurses.  And chemo.  And cleanliness.  And systems in hospitals.  And appetites.  And continuing on the path I've used my whole entire forty five years of life.

Never stop asking questions if you don't get the answer your gut is asking for.  Ask. And ask again. And keep asking until your soul is 100% content.
Whether it be for fucking mouthwash, or shampoo because his head itches so bad.  Or for a little education on how to give himself a shot that his mom is so paranoid of.  And how to make sure counts stay within reason.  And how to make anything and everything just a little better.  For this life.  In this fight. And avoiding social workers because they flat out suck.  

Last week Kris was in the hospital.  What started out as just the typical yucky feeling of fighting this fight, soon turned into 10 bags and rounds of various chemo's.  Chemo's that we knew would drop kick him hard into a wall.  And wall it was.  By Friday after pleading with his doctor to just go home to try and recover there.  He agreed.  But not without procedures and instructions.  Instructions that included injections into his belly every day to help keep his counts up. Instructions that soon become forgotten because you are so sick and you are trying to remember yet feel so weak and shitty, but you know it's what has to be done.
While in the hospital they administer something called "Hydration" rounds.  Which is something to push through after the chemo has done its damage. 
When you go home, it's a whole new monster to deal with.  His mouth is full of sores. He's puking up nothing.  He's up and down trying to go potty.  He's laying in his own hair that is falling out and itching beyond words.  He can't be around people because counts are at an 8.8-

Our weekend was hovering.  Hovering to cover him with anything and everything filled with love.
I won't get into details.  But I couldn't settle myself down.  He is weak.  He is sick.  And he is a fighter.

Yesterday we headed back for MORE chemo.  As we arrived, his doctor was down the hallway looking for him.  Kali and I walked in one way.  And Bill and Kris were already in the waiting room.  (Apparently in the wrong area)-  What I have learned also is the terminology for "Infusion"-  "Induction"- "Spinal Induction"-All mean different things, and DIFFERENT locations.  So after almost losing my shit to Dr. Chen, and asking him for some "magic mouth wash" -(in which I am still amazed that I didn't hear about this during our first boxing match and chemo) that YES...in FACT there is a mouth wash that a pharmacist has to make to help with the many many sores in his mouth. 

Infusion started, Kali and I sat bedside.  Soon to be told, we'd need to head to hospital for Spinal Chemo after this 2 hour bag finished up there.
So another spinal tap, another round of chemo, making it our 15th in 7 days. Here's my birdie waiting for his spinal, and 15th round.  This one going back in through spine.

I can't even complain to any of you.  This is what HE looks like.  This is what CHEMO looks like round after round after round.  To say he's been a trooper is seriously an understatement. 

Yesterday was rough.  I cried lots without him looking  I won't get into details. But purchasing one med that was $652.00, and the other $200.00, and the other $80.00 at out of pocket even with insurance to keep him alive.  Money doesn't matter.  It's just a realization of what the hell is going on here. Getting bags of ice to haul that medicine home with him so he can inject himself. Also making sure I keep everything clean like the second the nurse wanted him to sign an authorization for the spinal procedure and began to hand him that plastic pen thing that I am QUITE SURE sick people prior have touched.  And so I blocked it like a maniac.  Wiping it down with my Clorox wipies that I carry.  Standing in front like a guardsman. Watching him smile at mama bird because he knows it's my ammo.  He knows I am me. 

Because that is what I am.  I am a warrior.  I am fighting for him. With him. 

Because that is what I am made of. 

Because as I told you all once before, and I will say it a trillion times.  Until my last dying breath. 

I will give every ounce of ME to my birdies.  

I am exhausted. Again. But nothing in comparision to my baby.  Nothing. 

Pray for him.  Pray for my fighting strength.  That I keep my mouth zipped at times when I want to rip peoples faces off.  Pray that I keep my hands to myself when I'm in warrior mode. 

Because I am a lover.  

For my babies. 

Forever. 

I will try to update, but I can tell you, my world is scrambled.  

Big love to you all.  Let things go, because life is so so delicate.

This Mama Warrior.  

ps. Keep the assholes out of my way.  Thanks. 
pss-  Friends and family of Kris?  text him.  He's sicky but needs love people.  Send him love.  It's what makes this fight worth fighting. 

Happy Friday

Here's to a cozy weekend, full of love and comfort. 

Do what makes you feel the best. 

Never settle.

And be kind to animals.

Big love,

This Mama Warrior Lisa

 

More Truth.

Kyoko, thanks for this reminder today.

I've loved our friendship from day one.  And I will always cherish you.

Along with all my warrior mama friends.  You know who you are.  Thank you.

Thank you Shelley and Rox for the nice chat last night, and the amazing vino.  You girls crack me up during my most frustrated end of the day scrambled egg brain.

Happy Thursday...stay cool, and be thankful for all you have. Simple life.  Don't look at the big stuff.  They really mean nothing. Without life, and health, material is the root of evil even when we think a plush life is the best life.  It's not. 

Love to you,

This Warrior Mama Lisa