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