Sunday, May 17, 2015

Choices: 1st round of chemotherapy

Hot air rushes past dry crackling lips.  I desperately attempt to fill my lungs with fresh air.  Sucking.  Chest expanding.  It's no use.  Nothing changes.  I lay in bed, panting, trying to get air, but can't seem to slow down my breathing enough to take a deep breath.  Heart pounding, I can feel the blood pulsing through my limbs.  I take a quick assessment of my body: hot, probably fever; twitch my fingers, maybe the smallest movement only noticeable to me; open my eyes, just enough to glimpse a sliver of light.  What happened to all my motor functions?

*click*

I hear the front door.  Yay, Noel's parents are here!  Excited, I attempt to call out a greeting.  Nothing.  Soundless, my lips barely move.  Air flows quickly, but no sound comes out.  I try again.  Failure.

What should I do?  I'm all here in my head, but my body doesn't obey my commands.  I have no sense of time.  I'm unable to move, to speak.  Interesting ideas are coming to mind about how to draw attention: throwing my seal plushie down the stairs, knocking over my water bottle... Yeah, if only I can move.

*rumble*
               *squeak*

Ah, Noel's home!  Anticipating him checking in on me, I prepare to go all out and catch his attention!  Air hisses out my throat, but no recognizable sounds.  Furiously I attempt to roll out of bed... my foot moves one inch, maybe less.  My hand, a slight vibration through the bed, but no sound.  Panting, I lay, still in the same position I've been in all day.

Helpless I lay trapped under heavy comforters.  I listen to Noel greet his parents, go back outside to clean his paintball gear, then come back inside.  *clink*  I hear metal utensils clanking on the food bowl... Noel's probably eating.

Hello... I try to call out.  But again, I can only produce the same panting breath as before.

I don't know how much time has past until I feel a slight vibration through the bed.  Is that steps on the stairs?  Noel?  I hear a person creep silently to my side, probably trying not to wake me.

Look!  I'm awake!  Look harder!

Hot air continues to flow in quick bursts between my lip.  I still don't have control.  In frustration, I feel burning tears slide down my face.

"Why are you crying?"

I try to answer, but nothing comes out.  I feel my tears flow faster.

A rough and cool finger wipes away my tears; first my right eye, then my left.  New tears flow out.  I think my pillow is starting to get wet.  This is embarrassing.

I feel my body pulled partially upright.  I'm dead weight, I can't move a single muscle to help.  A wet spoon touches my lips and pours soup into my mouth.  I attempt to swallow and choke instead.  After a couple more failed attempts with the spoon, I mouth "straw."  Straw in hand, Noel holds my head up.  I still choke three or four times, but at least the fluid is going down the right tube.

Noel cradles my head.  I'm finally able to open my eyes.  Gently, he brushes his face near mine, "Don't scare me like that!"

"Sorry."  I didn't mean to.  I didn't feel good, I hurt, got really hungry and then I couldn't move at all.  I'm scared too... I've never been trapped alert in my body before.  It sucks.


Father God, I don't remember much of these past couple days, but I acknowledge everything is in your control.  Thank you for providing Noel the ability to work at home when I  first needed care.  Thank you that Noel's parents are willingly staying over these past couple of days to cook, clean, check up on me, literally feed me, carry my to and from the house to the car for my acupuncture appointment, feed the cats... So much, Lord God, am I blessed by your provision when I can do absolutely nothing on my own.

Fevers rage. Pain immobilizes me.  Strength is nonexistent.  Air, a difficult to acquire commodity.  I lay in bed; tossing in discomfort when I can, freezing in pain or sometimes writhing to find a more comfortable position.  I pant for air and claw at the bed.  My mind is glazed, time flows on.

Every day is a battle.  Do I choose to follow my doctor's advice and continue injecting the Neupogen that's supposed to protect me but also causes fevers in the 102+ range, uncontrolled by Tylenol and requires me to constantly take Benedryl to ward off my allergic reactions?  Just one more day.  Keep going.  Can I eat enough to maintain my weight without getting nauseous?  I've lost 5 pounds now,  but I make sure that I eat every 1-2 hours I'm awake.  Exercise?  Forget it.  I'm lucky that I can even use the restroom without falling over.


Lord God, even in this time, I know that you're with me because you promised to be.  In you I trust; no more and no less.  Because I acknowledge you, Father God, Jesus Christ and the Holy Spirit as sovereign Lord of my life and my household, I trust the stability of my health in your hands.  By choosing to follow doctor's orders, I am choosing to follow your lead.  As I send Noel off to serve in Bigfoot youth retreat, a huge part of me wants my husband by my side, but when it comes to serving you, may nothing... not my health nor personal wishes interfere.  So Lord, for these next 4 days and 3 nights, I entrust my husband, myself, Noel's parents all into your all-powerful hands.  May our attitudes and decisions bring you complete glory for we serve you first... beyond ourselves and even our families... to you and for you, Oh Lord, may you truly always come first.

In Jesus' name I pray, amen.



Here's a pic of my first chemo infusion of Dacarbazine... it's cold!


Monday, May 11, 2015

Now it Starts: Port Surgery

Am I ready?

Yes.  No.  I don’t know anymore.  Well, either way, I’m here at my workplace.  It’s 6:15am.  I’m starting the process by registering at admitting, then off I go to radiology for a port placement.  What’s that you ask?  The port is a small chamber placed in my chest with a small tube that goes around my collarbone, into my vein, and stops at the entrance of my heart.  Supposedly, this is for the purpose of quick easy access for chemotherapy, blood draws, etc.  *shrug*  Each step of the way, I have the option of saying “stop.”  Will I do so?  Probably not.

I like to push the limits of what’s considered “normal.”  In my head, choosing local anesthesia is scary because I’ll be awake for the procedure, but I’m curious.  I _like_ to know what’s going on around me.  I like the concept that I can jump off the surgery table right after the procedure and go to work right away.  I hate taking medications and I really dislike not having control.  Local anesthesia it will be!  This way, I also don’t have to go hungry.  This point is very important.  *wide grin*  Hey, don’t laugh!  For me, I really like to eat and I’m never comfortable going hungry. 

Sorry, I’m rambling.  Guess my nervousness is showing.  I’m in full control, but to lay on a table and let someone I don’t know cut into my skin… now that doesn’t seem sane to me.  *sigh*

I can feel my heart pounding.  My breath quickens as I anticipate the near future.   

Stop.   

Breathe in.  Hold.  

Breathe out.  Pause.   

Repeat. 


God, my life is in your hands.  Whatever happens, I leave to you.  If you choose to stop the placement of this port, please feel free to go ahead.  If you want to stop the infusion of chemotherapy meds, even at the last moment, I’d welcome that too! 

Father God, I know you have a plan for my life.  The reason I’m going through with this chemotherapy thing isn’t because I believe that it will cure me, but because I want to live the life you’ve set for me so that you will shine.  I don’t care if everything falls apart… well, I do care, but at the same time, you are more important than my life and so I want to choose a life that puts you on display. 

Father God, to your will, so be it.  My life, my future, my dreams are yours.  Please use me so that I can see more of you.


*prick*  Ah, in goes the IV.  *shrug*  I can feel the nurse fiddling with the line; I've seen this so many times already… anything else of interest to look at?  Glancing around, I feel a rushing ache in the upper back of my throat.  Alcohol?  Whipping my head around, I catch a glimpse of an open alcohol pad used to wipe the syringe just before connecting it to my IV line.  Yup, that was alcohol alright.  Good thing I planned ahead and took Benadryl first thing this morning.  Doesn't matter how many times I warn people, my alcohol allergy is so unusual that almost all cleaning processes use it in hospital settings.

Trickles of cold liquid run down my left neck, into my armpits, down my sides.  What's going on now?  Rolling my head to the left, I watch as a staff member runs a cold swab dripping with betadine to circle my left chest, once, twice, three times over. Ewwww, this feels gross!  The lady directs me to turn my head to the right and keep it there.  Cold and wet, the substance is used to coat my neck as well.  *shudder*  Cold fluid through the IV line and cold sticky fluid.... Ahhh, gotta stop thinking about the cold.  I just need to ignore the discomfort.  I hate being cold!  What else can I focus on?

"Close your eyes."

Huh?

Next thing I know, a large blue sterile sheet presses against my face.  Some paper jabs near my eye.  A rustle of paper, then I feel the sticky edges of the drape being pressed onto my left chest.  Cold, sticky, foam-padded… what?  Oh, the person is applying the drape, pulling it off my skin, then reapplying it; this process is repeated many times until the person decides the positioning is just right.  Ummm, normally not so bad when someone's sedated, but definitely not the type of care catered to someone who's awake and alert.   Does anyone realize how cold and how sticky and how painful just the set-up process can be?  Probably not.  I'm not even gonna bother focusing on the what it's going to be like when they remove the tape used to stretch out my skin.  *deep sigh*  Medical practices are practical, not comfortable.

I can't see anything but blue. Suddenly, bright light pours into my eyes as the drape is lifted off my face and tied up.  Ahhh, I can see the wall again.  Is that a slight reflection of the room against plastic panels?  Yup, I can see outlines of people moving around.  Cool!   Too bad I can't see the procedure.  *sniffle*

"This is the not fun part okay?  It's going to feel like you're getting pinched like this."  *sharp pinch*

Thanks for the warning… I think?

I feel the needle stab deep past my skin.  Lidocaine is injected.  The needle gets partially pulled back and stabbed in at different angles.  I guess it's getting numb... Somehow this round, I can still feel all the places the needle is inserted... I don't remember that being the case last time.  *shrug*  I'm not going to give them any reason to regret letting me stay awake!

A nurse comes up with her hands outstretched, "Do you want to hold my hand?"

"It's okay.  I'm fine.  Thanks."  I'm too busy clenching my right hand in a fist and keeping my left side relaxed.  Honestly,  I don't think I can relax enough to grab her hand. 

"Okay, now you should only feel some pressure.  No pain."

I feel the scalpel run across my chest.  Once.  Twice.  "Ummmmm, I can feel the scalpel."

"Really?  I gave you enough lidocaine that you shouldn’t feel this.  Okay, I'll inject some more."

Again, the sharp pinch as the needle dives deep into my tissue.  Still, I can feel the pressure of the fluid being injected into my body.  Once.  Twice.  Three times. I can feel the excess liquid trickling down the side of my chest.

"Okay, that should be enough to numb the area."

Again, I feel the scalpel run across my left chest.  This time, I decide not to say anything.  I can tolerate pain.  As the surgeon cuts deeper, I stop being able to feel the sharp edges of the scalpel.  Maybe the local anesthetic is finally working?  Whatever, it's better for me to stay quiet than to make comments.  If they really wanted to know how effective their treatments are on an alert person, they'd ask.

*stab* Ouch!  This is the part I hate most!!!  Strong pressure.  Choking sensation.  A hard lump-in-my-throat type feel.  Lovely.  A small guide wire followed by a flexible tube is probably being inserted into my vein with the end near my heart.

*yank*  Huh?  My whole body is being dragged up and down almost to the point where I'm starting to shift on the table top. What's going on?

"I need to break through the old scar tissue from your prior port’s scar to create a pocket for this new port."

Finally, all the rough motions settle down.  Yes, I'm almost done!  I can clearly feel the needle jabbing into my skin, the thread sliding with some resistance through my tissue.  Almost there!  My skin gets pinched closed while a gel-like material is applied... I think this must be the skin glue.  Even if I can't see, I can feel the small foam-like tip dabbing against my skin.  Steri-strip for extra protection, 2x2 gauze, large tegaderm.

Freedom! 

I'm so happy the procedure is done that when given permission to climb off the table, I skip the small step and hop down.  Almost prancing now that the ordeal is done, I look forward to changing clothes and returning to work!  YAY!

Father God, thank you for helping me make it through the procedure!  For me, the unknown can be scarier than pain; however, whatever happens, Lord, I know you are in complete control so I really have nothing to worry about.  Discomfort, pain... All that's temporary.  But you, oh Lord, are eternal.  Even if things go wrong, I believe that if you absolutely didn't want it to happen, it won't.  Lord, with you always by my side, I can be completely nonchalant.  I can push the limits knowing you'll warn me when I go too far.  Father God, in your presence, I have no deep worries.  Yes I am unsure of my future, but I am completely confident that you will step-in when I can't deal with things anymore.  In the meantime, I'll enjoy what I have and what I can still do.  I am self-assured, not in my abilities nor in my own power, but in yours.  I know that you are God eternal, promise-keeper, true to character and love me so much I get spoiled.  In you, regardless of circumstances, I have peace, joy and hope unending.

Thank you, God, for redeeming and using the bad stuff in my life for your glory.  Thank you that I can look forward because of your steadfastness so that I don't get trapped in the darkness of my upcoming chemotherapy.   

Trials.  Unknown future.  Test subject.  Lord, to you, I am none of these things.  In you, the fact I get to dwell in your presence is a given.  I am content.

Lord God, Jesus, Holy Spirit... Give me the strength to fix my eyes only on you.  Help me see the end-goal and not the temporary struggles of this life.  May my life, my choices, my words, my attitude be what it is because I have you carrying me forward.  Continue to bless me so I can see you in action!  Keep my heart from straying away from you.  In this lifetime, show me that just having you is truly enough.

In Jesus' name I pray, amen.


Please pray for my physical safety, strength, wisdom with managing symptoms, a good attitude, stability in my body...  stuff like that.  If God wills it, I start my clinical trial of chemotherapy tomorrow morning on May 13, 2015.

For following my blog, for reading my life story, for your wholehearted support, for your love and prayers... I know I am beyond blessed to have you walking with me through this life.  *Super big hug*  Thank you!  (^o^)/