Dealing with an Aggressive Cancer

Wednesday, August 12, 2015

Standing up straight, I notice pulling inside my right abdomen.  These past couple of days, I see abnormal round protrusions, likely from the cancerous masses.  My endurance is significantly less than 2 months ago.  I can feel my muscles wasting away from lack of use.  *deep sigh*  Do I increase my activity and aggravate the internal discomfort?  Or do I take it easy and let my muscles atrophy?  I don't like either option.  

Father God, please guide today's appointment with the cancer specialist.  My body continues to break down.  My tumors continue to grow.  Father, not sure where my life is going, but things aren't looking so great.  

Wednesday, August 19, 2015

I have the results of my CT scan, taken yesterday, in my hands.  As expected, the tissue masses are larger.  Somehow, even as my brain processes the unchangeable facts, I feel heaviness in my chest.  Tears seep from the corner of my eyes.  Am I sad?  Scared?  I don't know anymore.  With over 50 tumors in my abdomen, surgery won't cure me.  Depending only on human medicine, I've now tried and failed 7 types of chemotherapy treatments.  My largest 4 tumors each grow about 1cm every month.  Like a ticking time bomb, my lifespan depends on how my tumors push against surrounding organs and the issues that will arise due to malfunction or organ failure.  

As I lay in bed, tears continue to roll out the corners of my eyes.  They won't stop.  My pillow is damp.  I throw my right arm across my face hoping that the pressure will slow the flow of moisture.  It's not working.  My arm is wet.  Swiping my left forearm across my face I find that now both arms are wet.  Great, this is just what I need, a self-made swimming pool. Wiping my arms across my shirt, I draw in a deep shuddering breath.  I need to stop crying. I need a distraction.

My eyes wander across the room; I see a pile of snacks on my bedside table, an accumulation of scrap papers on the floor, clothes thrown over my chair to put away sometime later.  I see the mess of my room everyday; frequently for hour after hour after endless hour on my worst days.  Meh.  My gaze falls onto my legs.  I glare at each bony protuberance.  I wince as I see skin that stretches taunt over protruding tendons, knobby joints, thighs almost the size of my calves... not quite the look I want to go for.  I see my body and cringe inside; this body is weak.  *shudder*

I hear the garage door rumble open.  Noel's home.  He left work after I emailed him and my entire family the CT scan results.

Thump.  Thump.  Thump.  Rolling my head to my right, I see the top of Noel's head as he ascends the stairs.  As his tired footsteps fall on each step, more of his body becomes visible.  Suddenly, I notice two plastic-covered items dangling from Noel's left hand.  Is that Kristy edible ice cream?  *drool*  Quickly, before Noel lifts his head to actually look at me, my hands fumble around.  Grasping a fistful of my shirt in each hand, I swipe the material across my face to erase the trail of tears.  Pasting a small smile on my face, I prepare to greet my tired and over-stressed husband.

Noel finally reaches the second floor and walks into our bedroom.  Looking up, his smile wavers at the edges.  "I stopped by Safeway to get you this ice cream."

Ahhhhhhh, my beloved Hub-chan, he loves me so much.  I can feel tears pooling against my bottom eyelid.  Blinking quickly, I pat the space next to me.  Diverting myself, I snuggle my right side against my husband and quietly focus on eating my dessert.  Silently, we gently munch at the chocolate and almond encrusted ice cream bar.

"I couldn't stay at work anymore.  After reading about your CT scan results, I couldn't focus.  As I was leaving work, a co-worker asked if I was okay and I started to cry."

Tilting my head up, I finally look at Noel's face, then his eyes; I can see the tears shimmering with reflected light.  Dang it!  I can feel the tears welling up in my eyes too.  I bury my face hard against Noel's left shoulder as he holds me tight.  We cry.  A deep ache twists and throbs inside my chest.  I don't want to die and leave my husband alone; this year will be our 10th year anniversary.  How much longer will I get to live?  What kind of life am I living now?

God, my options in you are limitless.  I believe you can do anything you choose to do.  I know my medical care is beyond the ability of human medicine; that's okay because even throughout my entire course of medical care, you show that you are present.  I don't know what you have up your sleeve, but I know you have something planned for this life of mine. Don't let me waste what time I have on this earth be it 1 year, 5 years, or even 100 more years!  Father God, I thank you for bringing Noel home so that we can comfort each other. Thank you for such loving family and friends.

Lord, in your presence, I take great joy, deep comfort, and relax in the hope of your unbroken promises.  This life is not useless.  Lord, I have you in my life.  Lord, I know you personally as I interact with you every day.  Lord, I see you come through over and over and over again.  You are my rock, my redeemer, my God.  To you, oh God, I lift my voice in praise.  In the name of Jesus Christ I pray for your will to be done, amen.

Noel and I playing with the camera at Stanford while waiting for my doctor appointment:

Learning to Listen

Thursday, August 6, 2015

"I'm sorry."

"God forgives you."

"Will you forgive me?"

"What you said really hurt; but God forgives you."

"But will you forgive me?"

Silence.  "Fine."

Argh!  Not quite the response I'm looking for, but that just means I must have said something very hurtful.  What is it?  I'm not sure.  I'm apologizing because I can see that I really hurt Noel... but how?  What did I say and what did he hear?

God, beats me what I did wrong, but I did something.  Give me wisdom when the time is right to completely resolve this situation so that it doesn't happen again.  Give me ears to listen and a heart to understand.  Give Noel and I a time to really talk to each other; openly, honestly, and without hurting each other. 

In Jesus' name I pray, amen. 

Sunday, August, 9, 2015

"Noel, can I ask you about the night you got grumpy?  I know I apologized, but I want to understand what you were feeling and thinking so that I don't make the same mistake again."

"Huh?  I don't remember.  What night?  When did I get grumpy?"

If he can't remember, is it a big deal?  *deep sigh* 

I don't want to make the same mistakes over again so I need to know more.  What really happened?  I can't run away now.  I need to face my failures head-on.  I want to minimize future hurt for both of us. 

Deep breath in.  Pause.  Letting the air seep from between my lips, I prepare myself.  Even if I look stupid or sound dumb, I need to learn more about the communication between Noel and I. I hate doing stuff like this.

"A couple nights ago, you were complaining about dealing with traffic every day, hating the long drives.  You were talking about how work is very stressful in combination with my chemo treatments and feeling very frustrated.  Then I said something about God placing you in your current job and the location he's called you to serve in... I can't quite remember either, but something I said made you feel bad.  I remember feeling bad that you are so stressed and I couldn't help.  From my end, I was trying to comfort you by speaking of God's purpose for you and the hardships he's called you to... that he grows you because he loves you.  On your end, what did you hear?  What part of my words were you reacting to?  How did you feel?"

"Oh, I remember now.  I needed to vent.  Instead, your reply made me feel that the job I'm doing is not doing enough.  That I'm not working hard enough.  That my effort isn't appreciated.  I just want you to listen."

Father God, thank you for providing a resolution in how to deal with a similar issue in the future.  Thank you for a deeper understanding into how Noel thinks.  Thank you for creating a time I can really listen to Noel share about his thoughts and struggles; I really enjoyed tonight's talk.  Thank you for keeping my mouth shut to listen and stopping me from interjecting my thoughts, comments, or any advice.

Lord, I will continue to pray for my husband's well-being.  I ask that you bless Noel with patience and calm as he drives through traffic with increasingly inattentive drivers.  I ask for your provision in wherever you call Noel to work.  Give him wisdom to prioritize, a heart to love on his co-workers, focus, flexibility, energy to face long hours, and unshakable faith that he is exactly where you call him to be.  Open his eyes so he can see the path you're walking him through.  Keep his eyes fixed on you so that you will shine.  Provide so that Noel knows he is not working by his own power but by yours.

God, give me the heart to just listen when my husband needs to vent.  Give me the wisdom when to stay quite and the right words when you want me to speak up.  Father, I submit my heart to you.  Lighten Noel's burden as I cannot.  I want to carry some of my husband's load, but instead, me and my body are a burden.  If I can't speak words to help and to heal, I can pray.  So Lord, be the support my husband needs.  Give him the strength, courage, faith to keep moving forward.  Give me the right attitude, heart, eyes and ears to be what able to accomplish what you've called me to do.  Give me the ability to serve and show my respect to my husband for all that he does.

In Jesus' name I pray, amen.    

God blessed me by strengthening my body enough that I was able to enjoy the 2015 Willow Creek Global Leadership Summit!  Thank you God for using the classes to give me the wisdom and courage needed to speak up and work things out with Noel.  Here I am enjoying the sun and cool breeze after my last day:

Feeling Useless

August 3, 2015

How long have I been on disability now?  Close to 3 months I believe.  In these 3 months, I find myself laying in bed hour after hour after hour.  I eat, so dishes pile up.  I change clothes, so laundry accumulates.  

Poor Noel; he works, he cleans, he takes care of the cats, he has obligations as part of the paintball team to practice, and he takes care of me.  So much for being in a marriage where both husband and wife work together.  Noel gives so much by taking care of me.  I take and give nothing in return except to be a source of stress.  This lifestyle irks me.  Sure I don't always feel well, but I'm not incapable of helping out either!

With solid determination to do something and be helpful running in the forefront of my thoughts, I roll to my left.  Kicking my feet off the edge of our super high bed, I half-roll almost onto my stomach before bending my legs.  Reaching my toes to the floor, I forcefully leverage my upper body away from my pile of pillows and the alluring softness of my mattress.  Standing upright, my vision immediately starts to cloud up with a film of gray.  For a moment, everything is in shades of black and white.  My head throbs to the pounding of my heart.  Right hand on my bed for balance, I quickly bend forward at my waist until my head is parallel with the floor and start walking.  This happens everyday, my blood pressure drops, but in about 5 steps, I fully recover.  I can see the beige in the carpet again.  The overwhelmingly loud pounding in my head fades to a soft thumping rhythm.  Once again, I'm upright.  I don't bother to stop walking, but my hand no longer needs to be on the bed for balance.  Okay, time to start being useful!  

Going downstairs, I let my left hand float over the railing.  I don't expect my legs to collapse, but I take pride in being able to say that I haven't blacked out in a while.  *sheepish grin*  Well, at least I've never blacked out while coming downstairs!  *wide grin*  Not something on my to-do list.

Shuffling across the cool laminate flooring, I arrive at my destination; the kitchen.  Surveying the area, I see plates, bowls, and utensils stacked one into another soaking in a bucket of water on the right portion of the sink.  The left sink portion contains more bowls and plates.  To the left of the sink, cups and baking pans sit waiting to be cleaned.  On the stovetop, a large pot with old spaghetti sauce needs to be soaked for easy washing.

Heaving a deep sigh, I mentally prepare for the task at hand.  First, soap the dishes on the left side of the sink.  While rubbing my sponge across the surface of a small bowl, I note the slowness of my hand movement.  Forearms braced against the rim of the sink, my body half-sags for additional support.  This is sad, there's no strength in my arms.  Determined, I use a little more strength, speed up my movements.  I feels my reserves draining faster.  Never mind, if I'm going to finish cleaning even half the dishes, I need to slow down and conserve all my energy.  

I complete washing all the small stuff, the pot's gonna have to wait.  What should have taken 10 minutes (max) to wash just took me 30 minutes!  My hands have no strength.  I can feel the pounding of my heart, the weakness of my legs.  *deep sigh*  Time to rest in bed.  Forget the laundry, sweeping the floor, playing with the cats... I'm at my limit.  Time to lay down again.

Lord, thank you for the motivation to do more than be a blob at home.  Even though I can't fully  contribute my portion of the basic housework, I'm happy that I can do a little something.  Thank you, God, that since chemo was last week, I should be getting stronger this week!  I look forward to getting stronger, doing more, maybe even playing paintball?  *hopeful look*  

Thank you, Father God, for giving me a mind that won't allow me to wallow too long in my weakness.  Thank you for giving me the drive to keep pushing my physical limits so that I don't get even weaker.  Lord, I fear not being able to do anything.  I fear being a useless weight my husband has to deal with.  I fear loosing what little independence I currently have. 

Father, I have many fears; and yet, in your presence, I have joy and hope that is not of this world.  Keep giving me the heart to struggle and not give up.  Give me a smile that shines from your Spirit.  Give me the wisdom to use everything you've placed into my hands for your glory.  Give me your heart to keep loving others.  Make this house you've blessed Noel and I with as a place of rest for the heart, a place your Spirit dwells, a place where you shine so bright that only joy, peace and hope exist because you are clearly here.

In Jesus' name I pray, amen. 

Me hanging out in my hyperbaric chamber:

Now

Ahhhhh... I want to punch something. 

Frustration.  Irritation.  Inside, I feel a welling of emotions; twisting, tangling, knotting.  My stomach churns.  A lump sits in my throat.  Fighting to suppress the rising bile, I decide to take action and sit up.

Tossing pillows over my head, I create a soft sloppy backrest. Wriggling upright, I puff out a breath of air.  Gross.  My mouth is coated in cotton fuzz.  Taking a sip of water, I derive no pleasure from the stagnant blandness.  My tongue is slightly numb and my tastebuds are ineffective at sensing any sweetness.  Everything I eat tastes like it's gone partially bad. Then again, eating just makes me feel worse.

Never mind, I'll deal with eating when I next need to.  Later is better.  

Stupid chemo treatments.

My body shivers as chills run through my limbs. Probably a random low-grade fever.  I get these all throughout the course of a day.  Not an issue.  Ignore it.

Looking for something to do, I turn to focus on my heart.  It's still pounding.  Right hand on my jugular, I hold my index and third finger over the thumping of my pulse.  Twisting my left hand, I count the seconds drifting by on my watch and the pounding under my fingers. Done.  I withdraw my right hand, letting it drop to my side.  Great, my heart rate is 112 in resting.  Guess that's where my headache and fatigue come from huh?

Rubbing my hand together in annoyance, I hear the empty papery sounds of dry skin on skin.  Numb.  I can't feel my hands very well right now.  Supposedly, this is a temporary side effect (for me) of this chemotherapy treatment.  Reaching down, I gingerly touch my toes. That hurts.  My sensation's so messed up that each toe feels bruised.  

In disgust, I throw my arms out wide.  Unmoving, I let my mind wander.  Being physically present, acknowledging my deficiencies, dwelling on altered physical sensations is driving me crazy.  I've slept all day and can't sleep anymore... But I don't have the energy to release my feelings of pent up discomfort. 

Time to withdraw.  If I don't move... I can distance myself.  In a quiet corner of my mind, seal myself inside thick walls.  No one can disturb me here.  I don't feel anything here.  I can pull away from my body and rest.  Close the space smaller.  Tighter.  Deeper.  I can feel my eyes glaze as they drift closed.  The sensations of my body dull out.  Sounds dim.  Away from despair.  Away from things I have no control over.  Away from the troubles of this broken body.  

Peace.

Quiet.

Boredom.

Utterly bored, I crack open my walls.

"Hey, Jesus!  Wanna spend some time with me?"

In the darkness that is not dark, in a place that is formless but has walls, I exist.  I smile with the joy that I'm not alone.  My God walks with me.  He lives in me.  He provides for me.

I am satisfied.

Stuck at Stanford Hospital

Wednesday, May 27, 2015: Stanford for scheduled blood draw

Just wanted to let you all know that the docs admitted me at Stanford today because they were worried about my low red blood cell level, high fevers (103F), potential GI bleed, and even considered abdominal surgery. 

The surgeon who checked on me today was the same one who helped perform my last abdominal surgery in 2013.  He totally remembered me and even got a little emotional seeing me back in... but he was able to pass on the message that I'm physically very capable and strong so the staff gives me more leeway.  Praise Jesus for providing not-so-random meetings!

Surgeon's verdict: no huge abdominal surgery right this minute.  Why?  The bad news is because surgical removal of my masses will result in so much resection of my intestines that I'll end up with multiple poopy bags!😱 So surgery is last resort even though my masses almost doubled again since 6 weeks ago (5x5 for the largest mass).  

I'm being well protected by God in Stanford with my crazy allergies, especially my unique sensitivity to alcohol (not the alcohol itself that can evaporate, but something linked with it?).  Every lab draw and every IV line switch that requires cleaning is dangerous for me. So far not a single accident has occurred.  For me, this is a miracle in and of itself!  Nowadays, everything has alcohol: cleaning pads, hand wipes, IV line green caps (Curos caps), surface wipes, and even hidden within medications.  Each step of the way, God has and is continuing to prevent any alcohol from contacting my body.  Yay!!!

I'm here, stuck in Stanford, for 5 days now.  I now have a drain hanging out the right side of my abdomen with a little plastic bulb to create negative pressure to suction out the fluid.  It's pretty neat!  I've learned that if my abdomen hurts, I request my drain be flushed with saline (probably reduces the bacteria) and all the pain goes away without additional medications.

I'm on Zosyn, IV antibiotic, but my fevers continue.  The doctors added IV Vancomycin which resulted in my face flushing hot red and my chest getting itchy.  First dose stopped, but pharmacy thought the reaction was from pushing the medication too quickly.  Second trial of  Vancomycin given at a slower rate resulted in difficulty breathing, my entire face and chest itching, face burning and fire behind my eyes... 50mg Benedryl later as my symptoms start calming down, I'm told that the night doctor wants me to continue with Vancomycin and more Benedryl.

What?!?!

"No."  I will NOT take anymore Vancomycin.  This is ridiculous!  Out of all the antibiotics out there, there's gotta be other options that won't knock me down.  25mg Benedryl makes me cross-eyed.  Even more Benedryl and fighting allergy symptoms is not my idea of a beneficial healing process!

I know the doctors are trying to protect me.  With the Zosyn alone, my fevers got so high it resulted in rigors, severe uncontrollable shivering with me feeling super cold.  Each time, I fought to control my breathing, protect my tongue away from my teeth and minimize the convulsive spasming.  A great workout.  After 45 minutes of shaking: my muscles ache, my hands tremor with fatigue, and back hurts.  Kind of weird.  My body is only a fraction under my voluntary control, I'm trapped inside my head, but at least I can gasp out single-syllable replies.  Not my most looked for activity of the day, week, or ever again in my life!

Thank you God that the daytime doctors agreed with my decision to not continue Vancomycin!  Thank you, Lord, for  providing another antibiotic, Zyvox, that my body is easily tolerating.  Thank you for taking away the crazy sweat-dripping fevers, the severe fatigue, the pounding headaches, my uncontrollable muscle spasms, my inability to breath deeply, my mist-clouded mind, my gut-wrenching pain that would immobilize me and so much more.

Thank you God for helping the doctors find the seropurulent abscess hidden amongst my tumors.  Thank you that the medical staff cares enough not to take my allergies for granted.  Thank you that when my body spasmed out of control, you provided people nearby to help when I couldn't call out for help or hit the nursing call button.  Thank you for the favor you've given me in the sight of all the staff and doctors. Thank you for helping me be able to bless others even when I don't feel well.  Thank you for your Spirit in me that enables me to smile, be patient and love on others even when everything seems to fall apart.  Thank you for getting me through 3 days of not eating without biting someone's head off (I really hate being hungry)!

Heheheheee...God's blessing me everywhere I go so I'm spoiled by lots of nice ppl. Yay!!! Praise the Lord!

These past couple of days, I'm learning again and again to trust in God for my health, my attitude, my emotional status, my physical capabilities, my allergies.... trusting that even when things go very wrong, nothing is out of God's control.  Everything that scares me being in a hospital: minimal choices, limited option, restrictions, lack of privacy, living with a noisey roommate, the service I receive, the food I eat... I can control none of it and the lack of control freaks me out!

Please pray that my heart stays soft and receptive to MD orders instead of me being stubborn thinking "I know how this should be" or "I want this."  Pray that God will use me as a light in the hospital so much his Spirit shines undeniably by my actions, words, attitude and "the God factor!"

Love you all lots!

K

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!

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^)/

Feeling the Pain

“Food allergies?  Well, besides dairy, gluten’s pretty bad.  Yeah, feed me some and I’ll show you what happens!”  *wide grin*  “Want me to try some?”

No one ever takes me up on the offer; honestly, I’m not serious either.  Even though I can list the side effects of ingesting a product with gluten, it’s been months since I remember actually having to personally deal with the situation.  Bad experiences fade over time…. Or rather, Kristy’s brain is like a sieve and I don’t retain a lot of information unless I’m actively using it!

While shopping for groceries, I find a yummy guava juice that I used to drink years ago.  *drool*  Nothing  in the ingredients state gluten; I can’t find anything online pointing one way or another so there’s only this huge unknown “natural flavor” ingredient.  I know that depending on what the “natural flavor” is and what it’s made from, there is a chance the ingredient contains gluten.  *shrug*  Well, so far almost all the natural flavoring products I’ve come across are safe.  I’ll be fine.  Even just a small fraction in the juice should be okay right?

Wrong.  Oh am I so wrong about taking my food allergies lightly.

Saturday evening, my whole midsection hurts, but I’ll live.  *shrug*  No big deal, I’ve dealt with this situation before, I can do it again.  Today will be achiness everywhere; tomorrow I’ll feel bruised inside; day after I should be back on my feet.  Easy.

Well... not quite so easy.

Sunday morning… okay this is beyond NOT fun.  Each breath I take sends flashes of pain ripping through my abdomen; deep inside, muscles spasm, twist and knot.  I clench my teeth, my arms and legs are tense as I hiss in response to the pain.  Panting with shallow breaths, I attempt to minimize all movement.  Wait, what if I roll to my side?  Rolling (not even an inch), I quickly stop as waves of agony wash through my mind.  This is so NOT a good idea.   Returning to rest in my original position, I move slowly, freezing as each small muscle twitch amplifies into minutes of prolonged agony. 

Great… why didn’t I remember how bad the pain is?  Was it this bad before?  I can remember every instance where I had trouble moving due to pain… this doesn’t top my worst day, but it definitely makes it into my top 10 most painful experiences list.  Grrrr… This will pass right?  By tomorrow, my insides will feel like I got punched black and blue, but I should still be able to work.  This pain, I just have to hold on for one more day… after that, I’ll get better again.  I always get better.

Finally, the long-awaited Monday comes.  YAY!!!  Knowing that my pain should be gone, I twist my body in an attempt to snuggle deeper into the comforters.  Instead, I barely move and my eyes pop open as fresh waves of pain assail me.  What’s going on?  I didn’t have abdominal surgery again did I?  No, this is much worse.  After each abdominal surgery, even without pain meds, I could still move.  Right now, I hurt so much that I’m afraid to move anything.  I can feel my insides shifting with gravity.  The dull ache’s expected, but I’m surprised at how the smallest movements still send shards of hot knives through my abdomen… mostly just on my right side.  Ahhhh… got it… right side is where my largest tumors are.  Meh.

Frozen in a partial roll, I debate my options.  Well, today _is_ better than yesterday right?  Nothing inside is torn, probably just inflamed.  I’ve got to get up some day anyways.  Jamming my arms into the bed, I vault my body upright.  Gasping for air, my mouth opens but my body refuses to take a breath in!  Frozen, my head spins, my body feels both weak and yet trembles with tension.  Stop… this hurts too much!

Focus 

                             Slow breaths

                Concentrate

Pain is only a sensation.  There is no injury.  I have no wound.

I need to stand up.  My back refuses to straighten.  I hurt.  Shuffling forward, each step drives nails into my abdomen.  There’s no way I can make it to work today; I can’t even walk properly much less attempt to treat patients!

Tilting my head up, I look at myself in the mirror.  Oh, this looks good… my back is curved into a half cirlce, my shoulders are up by my ears, I can’t straighten my knees.  Oh yeah… this posture will inspire so much confidence towards me as a therapist.  Okay… today’s a no go for work… back to bed.  Slowly, slowly… move, pause, breathe, relax.  Repeat.  I can do this.  I can get back into bed… then I can relax.  For now, just ignore the pain.  Pain’s still there.  Ignore it.  Pain alone can’t kill me.  Keep moving.  I got this far away from the bed, I can make it back.  I will make it back!

Father God, as always, you provide in amazing ways.  Usually, my CT scan is scheduled first thing in the morning, but this time you set my appointment in the afternoon.  I tried calling radiology a couple of times to move the appointment earlier but could never get through.  Every time I even thought about changing my CT scan appointment time, you stopped me.  End result?  Your timing is perfect.  Your plan is flawless.  I couldn’t get to my CT appointment any earlier than my scheduled afternoon slot.

*wide grin*  You’d think I’d learn my lesson already!  When you provide Lord, there’s a reason; even if I don’t know what your reasons are, everything always turns out better than just right!

Lord Jesus, give me the wisdom to take care of this body even as I push it to the limits.  Thank you for taking most of the pain away.  Thank you that I could go back to work on Tuesday, have Wednesday to rest, work on Thursday, have Friday to rest… and then sucessfully work on Saturday with the help of a co-worker who decided to freely volunteer her time, totally unpaid, to help me get through the day.  As usual, God, your provisions, your timing… everything is better than perfect when I lay my schedule, my activities, my life at your feet.

Thank you, Father God, Lord Jesus, Holy Spirit… for loving me so much that my life is better than anything I dreamed of as a child.  Thank you for the challenges to grow me.  Thank you for the difficulties that allow me to see you in action.  Thank you for the love you shower on me.  Thank you for times of action and times of rest.

May I continue to seek you, Lord God and you alone.  For in your presence, I am complete, I am whole, I am satisfied. 

I lift my hands in praise to my amazing God who allows me to dwell in his presence, who gives me better than the best, who fulfills every need and heals every hurt.  In Jesus’ name I lift my voice in praise, amen.

This is me crawling out of my new mild hyperbaric oxygen chamber gifted by my parents, my brother, Winston, my sister, Jessica, and her husband, Andrew.  Thank you guys for the awesome gift!!!

Shaped Under Fire

What date should I set to start chemotherapy?  When's the latest I can delay the tests?  May? June?  Forever?

I'm scared. 

I don't know what I'll lose this round… maybe nothing, maybe everything. In chemotherapy, there are no guarantees except that foreign chemicals are placed into the body… and this time, it’s for a clinical trial. 

There are so many things I still want to do!  I want to participate in my friends’ wedding with no issues.  I want to play in a paintball tournament again.  I want to rockclimb.  I want to hang out with friends without limitations.  I want to host a paintball event.  I want the strength to finish projects!

*Deep sigh*

Stop!  

The purpose of my life isn't in my activities or my capabilities.  I thought I already made the decision to trust in God's provision?  To live the life he’s calling me to live so that his presence will shine… to do this, I can’t do things my way.  My wanting to delay chemotherapy may be the safer and more secure route, but living for God isn’t safe.  Where’s my faith and my trust in him unless I let him lead?

Knowing God, if he wants me to do paintball, participate in a wedding, work, rockclimb… I’ll be able to do it all; chemotherapy or no chemotherapy has absolutely no say in my future.

Lord Jesus, help me completely trust in you, your power, your abilities, your timing, your love for me.  Take away the hesitation that says I don't trust you.  Take away my fear because you are greater than all your creations combined.  Give me strength to do your will and not my own.  Focus my sights on the eternal future and not the temporal. 

Father God, as I once again place my life, my future treatments, my hopes and dreams into your hands... Show me that you are greater than everything and anything!  Set the test dates, doctor appts, schedules, chemotherapy, work... All these, Lord Jesus, I let go and place into your competent hands. 

Thank you, In Jesus' name I pray, amen. 

After I let go of insisting on doing things my way, all the pre-chemotherapy test dates fall easily into place; one after the other… no arguing, switching dates around, pushing to get the tests done closer together… it’s all set.  *Laughter *  Go figure… when I let God work, he does it all so easily.  There’s no way I can schedule all the tests, appointments, meetings, timing of every as well as it is now set. 

*shrug * Chemotherapy to start on May 13, 2015. 

I’m ready... I think.  *wide grin * I love a good challenge!

I’m excited to see how God will show himself.  I look forward to the physical and spiritual battles ahead knowing that the war is already won.  When I focus my eyes on my relationship with God, I am more than satisfied with this life, I love it!  Health, money, time, hobbies… none of these can replace the walk I have in Christ, the safety I have in his presence, the peace I have in his unbroken promises. 

My heart pounds with the unknown future, but I can joyfully state that I know God is in complete control; whatever happens or doesn’t happen, I get to see my amazing God in action, to personally experience his power, to undeniably feel his love.  What better life than to know the God of creation’s got my back?

See you all next time!

Love,

Kristy

Picture of my newest creation under hot flames and still not hot enough!  Eventually, I had to block the opening and use two torches... just barely got the metal hot enough to solder the silver.  =D

Living with Cancer

Tumor (Kristy’s definition): unwanted mass of useless living tissue; a glorified weed located in the body; a source of fear, pain and acknowledged mortality.

I know my CT scan was positive for tumors 4 months ago.  A large part of me is hoping that the tumors in my body would shrink.  Another part of me hopes that the tumors would disappear and never return! 

Striding down my hospital hallway, I flip through freshly printed papers.  These are the new results of my most recent CT scan with contrast.  Chest, still clear.  Good.  Abdomen… ahhh, here I go again.  Am I ready?  I don’t feel ready.  Shaking inside, I see that not only do I have more tumors, but the ones seen 4 months ago are all twice as large as before.  Wait, these tumors are almost half the size of my fist already?  More tumors than before?  Great, my third abdominal surgery was just a year and a half ago and the chemotherapy after that physically wiped me out… I do NOT want to deal with all this cancer stuff anymore!

*deep sigh* 

I’m just starting to get stronger.  I’m finally back rockclimbing and attacking the 5.10-5.11 climbs.  I no longer tremble with fatigue and physically crash so hard I cannot move the next day.  I’m getting better again! 

Do I have to lose my strength?  Do I really have to face becoming physically useless?  I don’t mind losing my hair for the third time, but will I have to give up working?  Give up paintballing?  Give up rockclimbing?  Give up driving?

My chest hurts.  My hands shake.  My vision blurs.  Once again, do I have to place my dreams on hold?  This time around, will I even get back on my feet again?  How many chemotherapy trials are enough?  How many surgeries before I choose to stop?

Father God, tears drip from my eyes as I face the potential difficulties ahead.  The last round of surgery and chemotherapy was extremely rough… it took me over a year to recover and I’m still not where I used to be.  Lord, what’s it going to be this time around?

God, I acknowledge that you are in complete control of my life, my future, my abilities… I know that even through the toughest of times, I get blessed by seeing you perform impossible miracles.  I know that when I am weakest, I notice most your strength, your love for me, your provisions, your amazing power.  Father, even as I get to see you more clearly, I’m still scared.  I hate losing control of my life.  I hate being bedridden.  I hate not being able to actively work and play.

Lord God, you know that I love the challenge of playing unique sports.  In rockclimbing, I get to enjoy the thrill of almost falling, savor the adrenaline of pushing through almost impossible spots, wallow in the sense of accomplishing a difficult goal.  With gentle balance on one outcropping to a light touch on another, I get to fly through the air, occasionally grasping handholds I’m too short to reach.  Success and failure intertwined.  Trial and error.  A twist here, backstep there… I swing my body up and over large round boulders.  Smooth transitions, dynamic leaps.  I can feel my body stretching and muscles sliding as time slows down.  Lord, the impossible becomes possible if I only try hard enough, push hard enough, let go of my fears.  Focus.  Determination.   Tender palms and achy forearms, but I know that I’m alive!  New bruises form.  Excitement.  Tension.  Pure stubborness.  I’m going to make it up or fall trying.  This is what I feel when I climb, knowing that you are besides me every step of the way.

Lord, I don’t want to lose this part of myself!

Then, Father,  there’s paintball.  I’m finally able to get back on the field, still slow, but at least I can play!  I enjoy the thrill of dodging paintballs, protecting my teammates, hunting down my opponents.  Even while breathing hard, I know that I should be able to do even more.  If I can remove the mental limitations, anything is possible!  Shouting out positions, dashing from one bunker to the next, keep my head low and gun up… as I play, satisfaction and disappointment intertwine as one game blends into another.  Lord God, because of you, I’ve learned that there’s no such thing as failure, but there’s always the opportunity to try again.  Again and again, I want to hone my body, my reflexes, my abilities.  I want to continue challenging and being challenged to grow.  I want to feel the rush of a job well done. 

God, I know that it’s only through you, that I’ve made it this far, that because of you in my life, I can confidently jump forward into the unknown… knowing that if I stray too far or push too hard, you’re there to catch me.  Father, it’s because of the security I have in you that I can so fully live my life.  Lord, because of your amazing love, I can take joy in the struggles that come my way.  Father God, thank you for giving me peace.  Thank you for guiding me in medical decisions.  Thank you, Lord God, that I am never alone.  You are my strength, my joy, my purpose.  Without you, Lord, I wouldn’t be the person I am today.

Lord God, thank you for letting me see your provisions.  Thank you for this period of time where I got strong enough to climb rocks and play paintball again.  Thank you for the opportunity to work with tools on fun projects and acquire many beautiful orchids!  Lord, in you, I have peace knowing that this path I walk has a purpose, that my life is not useless.  Thank you that I can continue to serve you by serving those around me.  May my walk with you bring you glory and honor.  May my attitude in good times and bad speak clearly of my relationship with you.   May your presence shine in my life and my lifestyle so clearly none can deny that you exist.

Lord, for as long as you allow it, I will continue to go all out… to work, to play, to enjoy this life to the fullest extent that you have blessed me with. 

Give me patience to wait on your timing.  Give me peace to face the challenges ahead.  Give me hope that in you, all is well.  Give me joy in your presence.  Give me strength to forge ahead.

Lord, may I never stop serving you until one day you call me to rest.  Until then, give me the heart to use all the talents and gifts you give me so that I can complete the tasks you call me to.  Lord, in this life, I choose you first.  Give me the strength to live for you first above all my own hopes and dreams.  Help me acknowledge that in walking with you, I lose out on nothing.

In Jesus’ name I give God my past, my  present, my future, amen.

​At the 2015 March CEPL tournament #1... Noel being weird.