Well, today marks 99. Ninety nine. It also marks a morning as per my usual that I woke, worked out, started a load of laundry, watered the flowers, tidied my kitchen putting away just one mug. One water glass from last night and exchanged one towel for a clean one. Empty nest again as he's learning to fly. First week away.
I never got a call or text from Kris last night that he wasn't quite feeling well. His tummy. His mouth. A little rash under his underarm. And he had puked. Along with chills.
He called me this morning. A lab/doc day that I am pulling myself away from because he's doing very well. I have little whispers from family and friends that say..."let em go" and "he's doing so good"-
Deep down in the mama blood that flows from me, that is hard. Very very hard. As a matter of fact, I just mentioned how I have this sick feeling that any minute I'll get a call...and start the drill. And so you know, I want to be with him through each visit. Navigating each doctor. Each nurse. Taking my notes.
He also mentioned to me that the bump on his leg seems bigger. Mentioning a fear of the leukemia returning. I was on my way into work and instantly I felt like pooping. My stomach, body, heart, blood pressure..EVERYTHING...fries like a short circuit. I got cold. Than instantly began to run down my normal talk about...."honey you know the Sprycel, and the antibiotics along with decreasing the tummy GVHD meds are probably messing with it all. My gut said...[His counts]. I've had this messed up relationship with platelets.
I said, drive to the Target parking lot in Downey and wait there. I needed to print some time sheets, and payroll along with a couple messages to return and I'd meet him there at 10am. His labs were 10:30.
When I arrived in the parking lot I could see him on his phone. Smiling. But pale.
As he got in the car I could hear congestion. Asking him more about how he's feeling...etc.
He was irritated as we drove that 605 northbound to COH.
One thing I've begun to understand in this journey is the PTSD patients suffer from while pulling into that awesome place is real. The energy he puts off is unmeasurable. It's awful as a matter of fact.
He was expressing to me how somedays he truly feels scrambled. Almost as though he can't comprehend and release a normal mental output. A feeling of mental exhaustion and doom. He's frustrated and feels less of a man. Kris as a young guy was part of The Gate Program in elementary and middle school. What he tested high in was "Intellectual" - the deal with chemo, radiation in lethal form, med after med...is a pickled mind. And it's normal.
But HARD.
When we got seated and were called his port line(red one) gave them grief(sometimes clogged, they have to use Heparin) and so the process took about twenty minutes.
Soon, we'd be down in our doctors office. Waiting. And waiting. For an hour and a half.
One thing I've learned, is that's a delicate place with delicate souls. Some fighting and some grieving. And so if the doctor runs behind I gently remind myself and him...someone is in need. And we've taken our "needs"'at times too.
When we arrived in the room I could feel Dr. Sahebis vibe. Full moon mania, she's working fast, asking questions, directing orders..briefly over viewing meds...etc. he begins to tell her what he's feeling. She checks his rash..(put cortisone on it )..she tells him to open his mouth after he rubbed his throat expressing it was sore. He has Thrush. It's basically another childhood ailment. Again, new immune system. She listened to his chest. Lungs clear. She prescribed him another 2 more meds. Along with one more for Mondays spinal biopsy. Kris speaking up about how he believes Sprycel is making him feel terrible. How his counts are most likely compromised because of it.
Truth is, I think he's right. I've been navigating through these meds, appts. Counts...all of it.
What I believe to be true, is we become our own self help navigators. She's the sweetest doctor...but it sometimes lies in my hands to point things out. She looks at summary sheets and labs, and vitals.
But she's human.
When our nurse weighed him, Kris said he read 60.2 on the digital scale.
Where in fact, I have his sheet that says 62.5.
That's a 6 pound difference.
Humans.
Life.
Worry.
Medicine.
Surviving.
Scared.
Scarred.
All of it.
I'm home now. And after picking up more meds this afternoon I got home receiving a text from him with a picture of Bucks. He's not hungry. Doesn't feel great. Fighting through because as he puts it...he's tired of being tired. I mentioned how wiped out I am when we return home from COH. I am truly wiped out you guys. His reply was "Mom, maybe it's your huge bag you carry"- chuckling to be funny.
I gently said...ya maybe it's this big bag. Of stuff to protect you. And me.
And I love you, wash your hands, take your antibiotics, and remember to push food in to eat.
I don't want to nag. I don't want to live on edge. 100 days is nothing. Yet, everything.
I'm not doing good today. Meanwhile yesterday I was on top of the world.
I'm a strong mo-fo and I'm not backing down. I'll sort through the med changes. I'll call out the nurses and doctors. I'll pick up meds and question mgs. at the pharmacy. I'll continue to wipe his dirty hands with wipies when he's with me, and bathing his phone in antibacterial wipes. I'll piss him off with my messages. I'll still question what he's eating and where. I'll hover tonight because I'm scared.
I'll toss and turn because of how fast things change.
His counts have dropped. My gut says they will continue to. Sprycel will do it's number on his taste buds and saliva. The new medicines will hopefully kick thrush to the curb.
I won't take life or 99 days for granted.
999 days either.
Today, I was slammed down again.
But nothing I can't handle.
Full Moon as pretty as you are.....bye.....
Happy Thursday!
Counts-
WBC 3.7
RBC 3.22
Hemoglobin 10.1 (low)
Platelets 98
Praying for all good things over the weekend...especially for him to just feel good..
PS. While pulling into work this morning I asked kali if she had heard from Kaiser about her cyst. She casually said "oh ya Mom, they called but didn't leave a message"-yesterday...
.......I casually without shitting my pants walked into my office while emotionally fried.....began to call their offices back. Any news from pathology? Her sweet nurse..."Oh it was benign"- and casually said...Mama, don't you worry too much, it's not always what we think....
And I thought....
Man, little does she know.
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Dearly Beloved, we are gathered here today, to get through this thing called life...
Rest In Peace PRINCE!
Another fallen icon....Heaven must be one big party...
Love you all..
This Mama Lisa
Thanks for letting me ramble. Better than crying!
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