About that shitty roller coaster ride that I want off of?
Last week Kris had his chemo appt on Wed. Everything, seamless.
Thursday morning I told him to be ready at 7:30am for Sunset Kaiser Transplant Team meeting.
Off we went. Coffee in my hand, take-out breakfast in his lap and down the 110 frwy we went.
Things went smooth. We arrived 50 miles jk--from where our appt would be, but our trek was like any other.....good. He followed me, I paved the way. Up to the 8th Floor to Oncology where we see my Aunt Annette- "Nettie"-and Jeff. There she sat with the fundraising box of goodies we WILL get to very soon- . (Thanks Janine and Dom)
We get called back into the Oncologist Doc that works directly with City Of Hope.... and so began the unraveling of words. Words again that gave me that lump so high in my throat, and so deep in my stomach that I wanted to puke. The room became dizzy again, and the rollercoaster ride drop was exactly what I knew would happen, only I thought for a split day that maybe, just maybe they'd call us in and tell us, that HIS diagnosis was easier. Or better.
He has a complicated inherited leukemia. But not complicated enough that others haven't been through. And won.
And so she went on and on, and we sat and listened, and I occasionally glanced eye to eye with my Aunt, almost in shock again, but held on to my chair because this is life. And this is the life we were handed.
Her exact words are WE MUST find a match. And he's a good candidate and I want you back here within a month at least to get this going. WE will search our data base that will include North America, Canada and WORLDWIDE. We will also sort out the possibility of retrieving cord blood with a close match to your HLA because your sister wasn't a match. We will test your Biological Father, and your Mom. Mom will be the last option because after bearing a child again after you (Kris) she built Anti-bodies.
Again...we just sat and listened.
From there she stated all she needed to in her matter of fact way...and said, "now you will move to your Transplant Team Coordinator, Teri" We scooted a door down and sat in Teri's office where we were filled in with more good scary stuff. I had to sign forms stating I will take care of him on exit of the hospital.
He will undergo the most intense procedure that a HUMAN BODY can take on. Before he leaves City of Hope, he will have intense physical therapy.
From there we stepped next door to the Social Workers office that literally makes you feel like death is sitting in the NEXT room, and Kris and I had to sign some of the scariest papers ever.
Soon I'd be sitting in a lab while they drew vile after vile of blood. Cute part as we left he patted my back and said "You ok mama"-
I'm fine, bub. I'm fine.
Long story short, they are fighting to get him a stem cell transplant asap. We left there after 4 hours and walked to the car with all the air knocked out of our guts. Trying to smile through Kris' fears. Things we had to talk about like "Directives" and "Sperm Banking" and "After death planning" and stuff that you never ever in a fucking million years think you have to talk with your birdie.
We hopped back on the 110 fwy in a solid mess of sit still traffic for him to say he "had to go pee"-
It took me back to his toddler years of potty training when "when it's time, it's time". I scrambled across a parking lot fwy and jolted into the first gas station somewhere in the grossest of grossest part of Hollywood.
He walked into pee, and I lost it. That feeling of so overwhelmed and so scared that you can't even share it with him back, because he was feeling the same way. And I need to be the strong mama that says we are gonna take one day at a time.
Side note I verbally said to drab Mc.Scary Social Worker---We are taking this ONE.DAY.AT.A.TIME.
As I shoved every fucking printed and signed papers in each folder they belong to in my SOCCER bag.
Back on the good ol' streets of LA through Downtown, as he wanted street hot dog and whatever else made him smile. We did. Kinda like that last hoorah's of giving zero shits because he just wants to taste something good and pretend for the next few weeks that the next few months are going to NOT be the hardest part yet. And yet we know. We all know.
We found front row parking on some ghetto side street by Santee Alley in the heart of Downtown LA.
Smiling as we hopped out trying to push back the last 4 hours. Sharing a hot dog and a Mexican soda.
Arriving home, I dropped him off. Cleared my car of his goodies, and again drove down PCH in silent awe.
I drove home to change. Poured myself a glass of wine. Sat there staring out the window at the birds flying carelessly over the harbor waters. Boats coming and going. And I bawled my eyes out. Again.
I didn't want to talk on the phone. I didn't want to text anyone back. I didn't want to check on the fire that was running pretty close to my parents. I didn't want to look at my soccer bag that has now turned into complete research hospital medical file mode. I didn't want to get up. I didn't want to go to sleep. I just wanted to sit there and cry.
Bill came home. We sat there and cried. We have a HUGE hill to climb over.
My apologies to those I may have offended. To my sister whom I bit her face off Friday night because I am tired. I can't answer questions I am still not clear.
I can't answer all the texts. That's all I can do. Go on BETHEMATCH.ORG
It answers so many detailed questions. For us and for you.
Today I was driving to the bank, and a lady called me from City of Hope. Asking my relation to Kristopher S.
"I'm his Mama"-
She said..."Oh, ok. Thanks, that's all I need right now"-
All I could think of is they are working right now. Right now as I post to you. To save his life.
This is a fucking roller coaster that I want off, and yet I am buckled so far back in the seat that moving or even wiggling isn't an option. I am trying to keep on top of things. Normal living things. Like groceries.
My dirty fridge. My favorite ten pairs of underwear that I rotate and soon run out and FINALLY have to do laundry. And I walk in circles in the morning. And if any of this makes absolute nonsense to you. I get it.
Don't read further. Poor Bill can't do anything right but just hold me. And hug me tighter when I melt. He can't grocery shop, he can't drive, he can't cook. jk- No, but seriously I am a barking freak right now. So he patiently says..."hun you just wanna drive" - Crazy when friends offer to help, and deep down, I just need to sort this stuff. Feeling your love, I do. But I can't have you wash my unders. Or clean my house. Or cook. Really, I just need to sort. It's in my veins. Remember...I am a warrior. Just collecting more of my weapons. Gearing up for the next round.
This roller coaster is hard. Like today when he sent me a first of the morning next. "Mom, my hair is finally falling out"-
Or, "Mom seriously this is horrible I can't taste anything at all. Just salty hot sauce type stuff".
Or, "Mom, I hope I can make it through this, because I am so weak"-
I am too.
And I am sorry for the lack of blogging, or texts back. Or phone calls for all of you wonderful loving people.
I thank you for offering everything and anything and any time.
It's hard to wrap your head around my thoughts right now. Sometimes I just need time. To focus on him.
And this.
This week he has another Bone Marrow Biopsy, and a spinal tap. This answers more questions of how many of the cancer monsters have been knocked down since round one of 5 of chemo.
We wait for a match.
We wait for new changes in him.
We hold on tight and love on him. Spoiling him with any food he loves. Because that's just what we do.
If you want to help him, stay tuned. We WILL need help. Like the dark times when someone just standing with a mask on in his room at COH, with light in their eyes of hope. To push him. Because look at me kids...HE IS GONNA NEED IT.
But next.....I'm off to fill out forms to store his little little birdies.
Until I can get my head back out of the fog. Pray for me kids.
I need it. He needs it more.
Come on Stem Cell match. Lord, hear our prayers.
This Warrior Mama Lisa
ps. I've learned this much so far- Chemo kicks him in the face and gut 48 hours after induction.
My heart breaks to see him so skinny and weak. Friends love me harder than I ever imagined, and yet I still isolate myself. Sleep sucks and nighttimes are overrated.
I do hear you all. I do. And there WILL come a day that I am gonna come running to you.
Be ready-
One. Day. At. A. Time.
kiss your birdies every single chance you get.
College bound and dorm kids tucked away? Good for them. Good for you. You did it.
Be proud.
Steer clear of this rollercoaster ride. I hope you're too short to ride it. Or big. Or whatever. Stay away.
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