Our week ended just like any other....full, and busy....- We had a surprise visit from our littlest for her bestie's birthday. A home we'd tuck ourselves away in on Friday evening. A place that felt warm, and for some reason, the wine tasted a tad bit better. Mix friends. Wine. Cake. Daughter. Best friends. And....a Jacuzzi.....bliss.
We always seem to reminisce on our drive home from any gathering. And there's always that one special thing that stood out. Usually for me it's the wine. jk. This time for me, it was the Jacuzzi. Lately my hands have been killing me. Each morning, and each day they hurt. I couldn't wait to slip into that bad boy.
On the way home, I felt good. Like really good. And it wasn't just the wine. It was the cake. The hugs. The smiles. The food. The kids we long to just hang with. The conversation. The cat, Tink whom made her appearance and said her hello's to all of us. It was the nice laughter we shared. That warm water that John set at the perfect temp so we wouldn't want to get back out- Point being, it was just one of those nights....
Beautiful.
And full.
Full of life. Celebrating twenty. How does twenty roll around so fast?
Happy Birthday Maddie- I can still see a baby in this face.....
We wish you a lifetime of peace, love and most of all, health.
We love you sweet sugar....
Excuse the grainy cell phone mama lisa style that giveszeroshits on phones. But man...when it comes to photos....farts.
Saturday would give Bill, Kali and I a chance to have breakfast out, which is a rare treat for us.
That's one meal we all tend to make and eat at home.
The sun shone down, as Kris and Jen made their way down to San Diego to get her hair done, Bill and I would slip around the harbor.
Sipping margarita's and decompressing from our whirlwind of a week.
Soon we'd land back at Pelican Isle. Our local watering hole. Funny thing was, we crashed a wedding. A wedding reception that was off the hook. First time ever. Kind of felt funny sitting at our local pub, in creeper mode. Two little stinkers. Our friends were coming over to watch the fight so we sent them the secret code -kidding- to come on over! Don't fret, we weren't dining, or drinking on anyone's dime. It was simply the best people watching in all the land.
Cute part of that page in this chapter was a guy attending the reception standing next to Bill had just ordered "his favorite" tequila...as he went on to explain to Bill..."it's the one with the antlers..."- Offering Bill one of those bad dudes. Back story to that, it was Shirley (Bill's Mama) favorite tequila. We always smile and grin at eachother when we see the bottle.
I of course, had tears. Hi Shirley! Your baby boy cheered you with some stranger. Guess it's the little things in life right...? Meeting new friends, in low places...shooting back a shot of --
"The one with antlers"- (Cazadores)
If only he really knew how cute that was....
We'd arrive back home to our birdies.
In great celebration fashion of 100- Here he is!
Weeks and weeks ago my plan was to host a little bbq, honoring the 100 day mark. Its obvious how beautiful this day is. And what it truly means. Only thing is, I want to wait. And celebrate bigger. Later. I want him to continue to heal with the changes of meds as our saving beacon. I want to delicately pray and keep positive vibes flowing in his direction. To yearn for bigger celebrations. Right now it's all about keeping infections at bay. It's keeping this body moving in the direction needed. He takes tons of meds, drinks plenty of water and wakes each day with a new chance. A new beginning. Each day we wake with honor of his life. And being here.
We will have that bbq some day soon. When the time is just right.....
Kyoko bringing her 100 day offering to our boy. And look at that cute bottle!
Note- Kris doesn't drink alcohol- But you better believe we filled those glasses and passed them around the room. Boom.
Sunday rolled around....our focus was Monday.
Bone Marrow Biopsy-
Still not feeling well.
A stomach that offered vomit at brunch on Sunday while celebrating their friends birthday.
But in no-big-deal-Jen-fashion....she proceeded to hand him all the napkins on the table, with a reminder to maybe hurl in the bushes....and possibly try to miss her feet :(
Our first topic yesterday morning was....
Let's get to the bottom of this-
Tummy Trouble, we're coming atcha!
Arriving as we do, first stop- Labs.
Second stop- Doc.
And me, still carrying my big bag. Big bag don't care. LOL
Doctor finally calls us in....
Where he proceeded to tell her about his chills, tummy ache, puke, over all feeling horrible.
And so....
She did the biopsy. One that I cowardly walked out of again.
Saying my sorrys and scooting to the waiting room.
(insert chin down, sloughing my bag down the hall in pure shame)
Returning once done with my list of questions.
Concerns.
Conclusion =
Gonna stop the oral chemo for now, until his stomach is settled. It's most likely GVHD in his stomach.
Back on prednisone (which is the miracle energy buzz med, but culprit in count drop)
Adding one more Tacrulimus, and one more Sirulimus
Bringing back Noxifil
Watching red line in port arm due to it's constant clog (could be infection, which could cause d. all of the above)
Also has a sore on his leg that still seems wonky. (Was one of the factors that originally brought him to doc and how this all started)
He continued on with his sorting of concerns.
We both asked about her father. The father she took to his doctor visit, and we'd check to make sure everything was okay. She told us he has lymphoma. So nonchalantly....
After laying flat for about 45 minutes, getting his port changed, and cleaned...
Mentioning again how he just can't wait to get in that ocean. Starting with snorkling.
He just can't wait. He wants to move on in life. And just feel better.
Her response..."Kris you can...and you will honey"
We'd be back down the road to....
The P.H.A.R.M.A.C.Y.
A place where a hungry mom with all patience gone should never step into.
You guys, I visit the pharmacy with his meds no less than once a week.
Usually twice.
The wrestling match would begin.
I'd smile through what I felt to be outright misery.
Asking at my breaking point to "speak to the pharmacist"-
At this point in the game I cannot deal with techs. I cannot deal with young working sassy pants, or shit, any aged sassy pants working at a counter that act as though there's no care in the world and life is just one big rainbow...filled with unicorns...and that you can just come back tomorrow to get these because we only have 12 on hand, and blah blah blah....
The prescription was faxed to you last week. Hours ago. Here's a hard copy.
W.H.Y.
I lose my shit.
Kris in the car with the seat tilted back. Sending me happy faces back in emojis because he see's my breaking point.
We arrive back home.
I sort meds.
I sort advice.
Remind him to wash again.
Pray at the table as I fill another weeks worth of medicine.
Crossing each summary line with my highlighter.
Making notes of what to re-order.
As his doctor says....counts look stable...- Let's be positive....
And don't worry mama...
STATS-
Day 103
WBC 3.2
RBC 3.38
Platelets 117 (rising which is good)
Liver looks good, kidneys look good.
Weight dropped by 2 pounds-
Today is Wednesday.
Today I've been a tad more weepy than the others, if that surprises you at all.
I want to let go, but I'm afraid.
I remember as a young child and my parents signed me up for swimming lessons and the fear started the first day in the car. Pulling away from the side I held onto with great hopes to meet the instructor.
And the final grand finale was jumping off the high dive.
I will never forget that feeling.
Ever.
Lately, I feel like this is life to me.
I am trying to let go. I've been traumatized and I've been broken down.
Always trying to hold it together. Jumping off that high dive and letting go of leukemia and relapse and rejection and fear and cancer and infection and hospitals and ivs and pain and suffering and sick tummies and watching my son brave something handed to him so unexpectedly.
I think I'm ready to jump. Into the bravery pool.
Everybody hates suffering. Everybody also hates to see pain.
I'm trying to be a new me.
To put down my warrior mode and begin to just live.
And trust.
There is a plan.
Trying to trust that plan.
Keep praying friends. For him. And for me.
Thanks for standing by me. I can only imagine you're all over reading my weepy mess.
This is the hardest thing I've ever had to write about.
Love to you all,
This Mama Lisa
Wishing you the best Kris. I know you're ready to move on and just live....
xoxo
