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