And even now, I don't feel compelled to write like I have before other posts. There is nothing I can point to as to why other than "the fog" that I'll share more about shortly.
Much has happened since my first infusion of the A/C cocktail.
The side effects of the Adriamycin/Cytoxan are night and day different from my previous course. Before, side effects seemed acute, severe, debilitating but short term. I knew when I hit my worst day, it was all uphill till the next infusion. I would feel better. I would have energy again. In most cases, even though my body seemed to always reserve the right to throw nausea in at any point with no warning, I would have a couple of days that felt almost completely normal . I'd make it to the gym. Food tasted ok. Sleep came easier.
This cocktail isn't like the last.
There is a constant discomfort that is impossible to explain. Symptoms are dull, constant and pulse with the beat of my heart every minute of every day. There is no energy. There are no normal days. I feel ill all the time. And of course, the hair is gone...again.
After my very first infusion (my last post), I made it through 6 days before the fever started.
100.5 is the magic number. At that point, as a chemo patient, you get concerned and go to the ER. That day, I knew something was different...in a bad way. I knew I was running a fever before I checked it. But I also knew I had toxic waste coursing through my body and had been prepared to feel bad so I didn't think much of it.
Looking back, as the day progressed, I retreated to my office put my head down on my desk and felt my body begin to shut down. This isn't right. I needed to go home. I called my amazing supervisor who shooed me home to rest and take care of myself.
Once there, I layed in my bed and spent hours, awake and restless, checking my temp every 30 minutes.
99.5
101.0
99.0
100.7
99.9
I didn't want to be the cancer patient over reacting to a low grade, inconsistent fever. I didn't love the idea of giving them my 150.00 copay....just so they could tell me to take some Tylenol and rest. But I also didn't want to be headed to the hospital at midnight when all the weekend craziness was headed there too.
I left my house at around 6 pm. I was admitted to the PCU (Progressive Care Unit) which now I know is a step down from the ICU, within an hour from the time I walked in. I must have said the magic words: chemo and fever. Everyone I saw from entry through most of my stay was wearing a mask and full body covering.
Upon admission my white cell count was 1.1. The low end of normal is 4.
"Critically low".
"No likelihood of appropriate immune system response to infection".
Had I waited....and the smallest micro organism challenged my immune system, I might have lost that fight. Considering how difficult this fight has been thus far, had I died due to a fever . ....I imagine I would have been a tad irritated.
Four days later, with white cells reading at 3.5, they let me go home. No infection found. No symptoms of any known virus. The fever was my body's attempt to tell itself to do SOMETHING to save itself. And when I think on that for even a moment I can't help but smile at the thought of an all knowing, all powerful, brilliant God who created my body to not only withstand this whole process but to fight these unseen battles within it to keep me here. How could I NOT stand in awe of the One who created me and equipped me to fight not only the spiritual but these physical battles as well.
So now, here I sit.....receiving my 3rd and final infusion. I'm happy to be done yet dreading the weeks to come of illness and fatigue. I have yet another fabulous nurse caring for me (see below) here at KU Westwood Campus.
Meet Aketia. She has the sweetest smile and is incredibly kind. She, like all of the others here at KU is proficient with each task and inspires confidence that allows me to sit here and think (or not) while she minds every single detail of the process.
I didn't write after my last infusion, but Allie (see below) was the lucky lady who got to administer all the meds and take care of me during my last visit. She, like all of the others, was kind, compassionate and wonderful.
There is no sufficient way to describe THE FOG.
I suppose if you could picture yourself literally standing in the middle of any given street, knowing there is something you need to do, somewhere you need to go, but there is a dense fog around you; one so thick that you can't see your hand in front of your face, and you feel stuck. The way is unclear, the paths aren't visible, there is no one around you who understands what it feels like and therefore can do nothing to assist you. Then there is this bizarre emotional side to your situation. You generally are pretty happy. You love life. You love Jesus and you feel blessed, beyond what can be measured, all the time. But...THE FOG.... is more than just surrounding you, it's inside you. Inside your head. The passion for life that you had...somehow you know is still there and is almost within reach...but you just can't make the connection. Are you depressed? Nope. There's no crying. No sadness even. What you feel is a numbness. Your senses are dulled. The color of life around you is bland. You can see it all..you can make sound decisions....but the ability to respond to it on the inside the way you once did is just not the same. The physical side effects to this course of treatment are awful. But THE FOG is by far the worst. You feel like a lesser version of yourself and you pray that when the FOG lifts, the parts of you that you liked, the parts that you feel added something to the world around you are still there.
The silver linings? In truth, too many to count.
EVERY smile or hug from one of the students at school brings a moment of clarity when colors are brighter and the fog lifts. EVERY text or email or squeeze from a teacher I'm blessed to work with forces (in a good way) a deep breath of the goodness around me. EVERY message or smile from a parent is yet another reminder that fog or no fog, there is nothing that can or will keep me from serving them with all that I have. EVERY prayer lifted up for us....is almost palpable. I feel them, even as I lift up my own for myself and my family. My family, church family, school family, friends and even those who, through this process, I have reconnected with after years...... THEY are the silver linings. Whether they know it not, they are sent by Jesus to minister to me and my boys. They will minimize what they do; they will underestimate the power in their words and actions. But they are the hands and feet of Jesus.
(Jesus speaking) Truly, I tell you, whatever you did for one of the least of these brothers or sisters of mine, you did it for me. Matthew 25:40
There is so much madness and chaos and uncertainty in the world. What would it be like if we all just "did for the least of these"?
I would include myself in "the least of these" category since my diagnosis in February 2016. My family has remained blessed by an amazing God daily throughout these many months in large part THROUGH people who have taken the time to reach out to us. And even in the midst of the FOG (hopefully to end sometime in the next 3 weeks) I am so very very grateful.
There are many months left of this journey and years of a new normal after that. But I exist as always as a blood bought daughter of the King of Kings and Lord or Lords. He has never left me, nor will He ever. He has never failed me, nor will He ever. He exists within the FOG as the beacon of light which keeps my feet moving in the right direction. He exists outside of it as the protective and guiding force that covers me and those I love.
https://youtu.be/1m_sWJQm2fs
Until next time.....
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