My Tuesday started just like all the rest. Early rising, coffee in hand while reading my devotional. Mental sorting the minute I know I'm alive....you know..... what I "should be worrying about"- Its truly awful. The trait I wish I could kick to the curb. And when one worry is gone on one side of the scale, I simply start to dwell on something else.
Sicko.
It's interesting how my twisted tummy and nervous demeanor quickly changes once I sip my coffee and settle down with a good read. Most every morning the word is spoken directly to me. My daily devotional kids. It's where it's at.
I jammed to work early before heading back home to fill my boys stomach with what I thought would be a great breakfast to start off a great day. He mowed down most of it, to quickly announce "he had to puke"-
One thing we've all come to understand is his stomach and taste buds have a mind of their own. One minute they are gettin' along just fine with him...while the next minute, all hell breaks loose. And that was basically the gig yesterday.
My reason for going along with him to his appointment, was my unanswered questions. His mouth. His gut. His meds. His labs. Last week I rocked the boat. Or shook the hut, if you will. It all started in the pharmacy when one person played dumb, and the ripple effect continued as I left messages for each doctor. And nurse. And the mayhem continued. And it was shark week for me, and my pity party continued as I put on boxing gloves and made my way around the medical field just trying to get answers. They all got to know who Mrs. Stahl was reallll quick. Just answer my fucking question. Or return a call and we can all go on with our days. When you haven't replied back about his Tacro/Siro levels (which are life saving meds) and you haven't replied back about if the labs I requested were in fact in the system.....
Houston. We have a problem. I have one shot at navigating through this. When his entire med summary sheet was "accidentally" deleted from the system and I have to spell out each med to do YOUR job for you---- We have a problem.
And so.....
Mrs. Stahl let his stomach settle. Filled his med box, grabbed another puke bag, and wipies. Drinks and pretzels to help just in case...and off we went to the concrete jungle. Kaiser, Los Angeles-Vermont- Down the freeway we went. No matter where we are, or what traffic we sit in, I just love to sit within 2 feet from my son. I cherish every moment he is here. Even when he's riddled with steroids that make him chatter like a chatter box birdie, and he tries to blow snot rockets when he exits the car I scream with all of my soul. You guys. Snot rockets.
Wipies rule the world.
Mrs. Stahl navigates that parking structure swerving in and out like a power ranger. Cracking myself up because if I was shot gun I'd be slamming my foot to the floor and most likely dropping F bombs to the person behind the wheel. But it's me. And ain't no stoppin' me. jk
As we got into the office. I could feel his doctors need to explain to me. First, questioning us and him. But most important trying to appease me. Looking at the "mom with her big bag of concern"- Something I don't do well with is making someone uneasy. I'm not there to give anyone a hard time. I just want answers.
Listen here kids, I was looking for answers last week. A simple return phone call. Or email.
He'd take a look into his mouth and take two steps back. "KRIS THIS IS GRAFT VERSUS HOST OF THE MOUTH"- Kind of like a "oh shit" moment.
Kris says back..."I told you guys...and Dr. S"-
Also he went on and on about his food, and why he lost a pound, because he can't taste. And that he generally feels like shit. That some days he doesn't want to get out of bed, while others he does. That his stomach is tore up. And he shits like ten times a day. And his ass is sore. And his mouth looks awful.
Listening to Kris vent to him about his frustrations, and how no one really understands.
I do.
I clarified with the doctor on "what's the best way to get ahold of them" when I have a questions. It's not like I'm asking if a certain band-aid is worth buying or not.
I have valid questions that should have been answered easily. By email. Or phone.
You know, 4 months post transplant. Just a little.....concerned still.
His counts look good. Platelets dropping causing a small means of concern. Most likely caused from his oral chemo. Lost a pound. Which is most likely caused from all the diarrhea. Adding a new med for his mouth, taking away one steroid-(which we will watch him slowww down-appetite and all)-
Back down the concrete jungle streets we'd go. Back to the parking structure, and down Sunset Blvd to the 110 we'd go. Headed to a place he'd want to try called "Birdies" for lunch.
Such an appropriate name. Parking down the street and through an alley. Watching him aimlessly make his way into the place. Pulling up on his pants as he snaps pictures with his big lens. Of his mom. Of the dirty alley. Of course, we make our way into a filthy bathroom just to wash our hands. He, of course leaving his stomach trail behind.
Kris is obsessed with food. It's one thing that makes him happy right now. Thank you steroids.
We'd rate the place a solid 6. And leave.
Places we go, and moments I can be with him are all I have. To still go with him to his appointments, making for a long day. It's all I have. It's what makes me feel better. To help him feel better.
It's a mom thing. It's something I signed up for when he came into this world. I remember picking up the pink antibiotic amoxicillin to help finally clear the remnants of a bad bug as a toddler. Or a rash. Or whatever.
And now, I am navigating the best way to help him feel better. GVHD. His stomach. His mouth. His skin. Post transplant. Never in a million years would we figure we'd be in this fighting ring.
Getting back into the groove of life. Just trying to live. To not worry about the medicines.
To not worry about a pharmacy tech that forgets to put in the prescription and so you have to stand and wait an extra 30 minutes. Or this place was out and so you go to that one. Or you drive to Baldwin Park because that pharmacist is the only one that "knows how to mix the corn-oil" to help your stomach.
Truth is, we don't know which one is working. We really don't.
What we do know is the ones I pick up and make sure they DO have in stock are the ones that are saving his life. Like Tacrolimus, and Sirulimus. And Acyclovir. And Gleevek (chemo)-
The others are up to me to tackle, and follow up and through to make sure shit happens.
Each week.
Each month.
We sat in traffic as per usual, but nothing I will ever complain about. Again, sitting next to him. Talking. We talk about everything. And to me, it's the chance to share life. While we can. I seemed to have passed the exit to the next freeway we'd need, landing us on side streets at 3:30pm right when schools let out-
Finally making it home, I'd stack our couch full of all the things he needs. Medicine. Food. Clothes. Mom stuff. His stuff. Finally he'd say...."mom, it's so hard to unload this stuff when I get home"-
Ha.
Once he left, I'd begin my summary breakdown. Going for a long walk. Filled with prayer.
Calling my parents. Calling Bill. The little updates that happen post-doctor visits.
Missing a gathering of girlfriends for birthday celebrations at the beach.
Shutting down like I do. I literally decompress. Watering my plants. Tending to chores.
Making notes, and praying. And long.hot.showers. And praying.
I don't do phones. And I can't do people.
I clam up.
#weirdo
We all move back on through life. For me, I'm making arrangements to move Kali home for the summer. Storage units, movers. etc.(sending her info on what, where and how to handle) I'm also working my normal job that brings my income and also entails lots of phone calls, emails and humans. Imagine that. lol
The days are moving fast. The moments are cherished more than ever.
I'm letting go, but holding on. I wish I wasn't such a mess. I wish I could close this chapter and walk away. Or graduate, if you will.
I wish I could live as though things won't change. Tummies don't hurt. Platelets won't keep dropping. Steroids won't make things weird. Cancer will never come back. My kids are protected forever.
Truth is, life isn't fair. It's up to me to navigate slowly but surely through it.
For now, I celebrate larger bottles of medicine. The Tacrolimus above in the largest bottle I've yet to see. Wednesday morning excitement!
#VICTORY - Relieving me from going back each week. 4 bottles of Nystatin for his mouth, versus one. Things are moving on up kids.
Someone's rockin' boats and rufflin' feathers......
I can tell you one thing.
My son will get all that he deserves.
One call, email, pharmacy, doctor and lab visit at a time.
If Mama Bird is there.....
It will happen.
How's your week going so far?
Kali has one more day left of sophomore year in college. An apartment that will be emptied and cleaned by this weekend. A storage center close to her that will be handled, rented and dealt with by HER.
And one mama that will be rockin' steady in about seventy two hours with BAD COMPANY.
You guys.
Did you hear me?
B.A.D. C.O.M.P.A.N.Y.
Feel like makin...dun...dun..dun.......dun...dun..dun.....dun...dun...dun....
Lots of love and peace with you.
This Mama Lisa, aka worrier warrior for LIFE!
No comments:
Post a Comment