(un)CERTAINTY

Monday, June 22, 2015

My feet drag as I walk into the doctor's office.  Plopping into a chair, I wait with Noel supportively by my side.  

I'm scared.  Today's another chemo day.  

Last chemo sent me to the hospital for two days with fever, a high resting heart rate and an even higher moving heart rate up to the 150s.  I don't want to deal with the chemo again!  Can I just stop?

I know God will guide the doctors in regards to my treatment.  I know God is all-powerful and if he wanted me to get chemo, I can physically crash the entire week and still be strong enough to participate in the Summer Church Paintball Event this Saturday?  Or God can let me have chemo and get no symptoms at all.  Even better, how about no chemo?  God can do anything.  But for me, will I have to go through another week of misery?

I'm tired.  Part of me is breaking inside.  How much more?

Father God, I don't know what you have planned for me.  I'm clueless as to which direction you're guiding my care.  Lord, I know that in you, anything is possible.  Please give me peace as I follow your will.  Give me comfort as I choose to serve you.  Give me a heart to accept the doctor's judgement as I know their decisions are under your will.  Give me the heart not to argue, not to push my will, but allow you to be in complete control.

In Jesus' name I pray, amen. 

The doctor comes in.  She sits down.  I know what she's going to say; there's a certain look.  Is that pity I see?

"Kristy, you will get chemo today.  To counter the alcohol allergy, we'll give you Benedryl and a steroid called Dexamethasone.  Any questions?"

Inside, my heart drops.  I feel myself starting to crumble.  What can I say?  I told God that I'll let him lead the doctor's decision.

But really God?  

Again?  

No break?

*deep sigh*  

My limbs have no strength.  Here I go, another round.  God, you call it.  You promised me I can play with the kids at the Summer Paintball Event.  I don't know how, but I know that in you, anything is possible. I will trust in your faithfulness.  I dread my future, but to walk with you is better than me walking my own path.  I commit to submitting to your will... But God, you know I'm really hating this chemo right?

Noel and I sit for two hours, waiting for my scheduled chemotherapy session.  I flop in my chair; my small black backpack supports my head, my legs drape over the opposing armrest.  At least this is comfy!  The sun beats down, I'm starting to sweat.  Okay, maybe a little too warm here.

Just as I prepare to move, a nurse calls out my name: "Kristy Cheng Esporo?"

"Here."  I wave my hand to get her attention.

"Are you waiting for your port to be de-accessed?  You know that your chemotherapy was canceled right?"

What?!?  "My port wasn't accessed this morning, we were just waiting for the chemo."

Three minutes later, my phone rings.  The PA (physician's assistant) is on the phone.  "Hi Kristy?  You know that your chemo is canceled right?  Your morning's blood test shows that your ANC (absolute neutrophil count) is 0.5, too low for us to give you any chemotherapy treatments.  Go home today and take the Neulasta injection to raise your white blood cell levels and we will see you in two weeks for chemotherapy."

Hanging up, I give Noel a huge smile and a thumbs-up.  My heart leaps for joy.  Sweet, no chemo today!  

Thank you, God!  You totally waited to the absolute last moment before notifying me of the cancelation of my treatment.  Not waiting would've been nice, but I'm totally fine with this outcome!

Friday, June 26, 2015

Father God, even without chemo, this week, my strength is up and down.  There were times I felt stronger.  There were also many times my bones hurt, I can feel my heart pounding, my head gets dizzy, eyes loose focus, a sharp sensation shoots from my shoulders to my hips where my muscles almost collapse in pain.  Father, I don't know what's going on with my body, but give me the energy, strength, focus, and spirit to serve those around me with a positive and loving attitude; no holds barred.  

May we as a paintball group be a blessing to all we interact with. Give us the heart to unconditionally serve, teach, love on each other.  I ask that your Spirit shine so bright all will know of your presence.  Bless the communication between all players, especially the captains and lieutenants, even the staff we come into contact with.  Guide the pacing.  Protect the children.  Keep us hydrated. Give us the wisdom to teach, the spirit to love, words to encourage, fellowship, joy, laughter, hope, and growth together as a community.

In Jesus' name, I continue to pray big for this event and expect to see you come through in amazing, wonderful, and totally unexpected ways!  

Now let's PLAY!  <3

Noel and Kristy at Stanford right after getting notified NO chemo!!!

Noel and Kevin preparing pods to paint:

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^)/

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.

New Information

“Here, this is for you.”

“What is it?  The packet’s really thick!  Oh… something from Stanford.  Hmmmm, no one told me to expect any packages from them.”  *shrug*

Tearing the bulky envelope open, I pull out a thick sheaf of papers.  Huh?  My name.  At least I know this information is for me.  Flip.  Flip.  Quick scan.  What?  Huge amount of hard-core medical terminology… something about a gene and clinical trial?  Okay.  Back up.  Front page.  What does it really say?

Date of Collection: 01 August 2013 (my most recent abdominal surgery date)

Specimen Site: Liver

Specimen Received: 22 January 2014 (probably sent for sampling after stopping chemotherapy)

Report Date: 24 February 2014 (about when I found out I may trial another type of chemotherapy)

Genomic Alternation Identified: PTCH1 loss exons 1-2 (gene sequence missing a segment which means that something in my cells isn't being properly regulated, possibly leading to the cancerous growths)

Therapy Associated with Potential Clinical Benefit: Vismodegib, FDA approved for use in basal cell carcinoma

Clinical Trials: 2

Taking some time to assimilate the information, I finally understand.  This packet of papers state that there is a known genetic alteration in the given sample of my tumor.  Furthermore, there is a chemotherapy medication with the potential to affect cells with this particular altered gene.  The medication’s goal would be to inhibit the mutated genetic pathway, potentially causing a slow down or even stopping my abnormal cancerous growths... maybe even with the potential to halt all my tumor formations.  Yay!

So, putting all the information together, if my scans ever come out positive for more tumors, I will likely be placed into one of these two available clinical trials.  At the same time, even though these trials are phase I, meaning just starting the testing phase for my type of cancer, the medication is already commonly in use for another type of cancer.  Hurray!  The side effects are already known.  The dosage already has an acceptable range of effectiveness (even though it’s for another type of cancer).  This option isn’t horrible.  In fact, even though this chemotherapy drug isn’t guaranteed to work… It’s definitely a better chance!

Lord God, thank you that my doctor sent a tumor sample in for genetic testing.  Thank you for guiding the testing process so that my doctors and I have a better grasp of what may be wrong.  Thank you for a potential course of action if or when my cancer becomes visible.

Lord, thank you also that through blood sampling, I now know that my vitamin B2 levels are low.  Since I started taking vitamin B2 supplements these last two days, my body has re-stabilized!  Hurray!

Little bit by little bit, I feel that I’m getting a better grasp at controlling my body… it’s actions and it’s reactions.  Father God, I lift your name in praise for enabling me to work with my doctors to figure out the new complexities of my body.  Whenever I feel hopeless or stuck, Father, you open new doors, provide more information, offer new approaches to my care.

Lord, I can’t wait to get better, go back to work and have lots of energy to enjoy the beautiful outside weather!  I offer up my praise, my heart-felt gratitude at your mercy.  Thank you, Lord God, for your consistent character, demonstration of love towards me and your power through impeccable timing.

Because of Jesus, I can pray directly to my Father in Heaven. Thank you for making me who and what I am. Amen.

Counting Down & Looking Up

Monday, February 24, 2014 at my oncology appointment:

Cold. A round object presses against my back.

“Take a deep breath. Another.”

As the chilly stethoscope moves around different areas of my chest, I draw a deep breath in through my nose and out through my mouth.

“Your heart’s tachycardic today.”

“Yeah, I know. Whenever I’m not feeling good and my body feels tired, my heart rate goes up. I think the nurse noted my heart rate in the 120s about 10 minutes ago.” And no, I haven’t been exercising or running. Wish I had a better reason than being tired for my heart rate to be up so high. Gazing upwards, I watch my doctor watch me.

“So what’s new?”

“Well, I’m getting myself ready to go back to work in 2 weeks.” Yes!!! Even though I’m super tired right now, I miss my friends at work. I miss working! I can’t wait to be out of the house! “Oh yeah, and when can I get this port in my chest taken out?” The port is driving me crazy! It sometimes hurts for no reason, occasionally gets super itchy (likely from the skin stretch tautly over the edges) and well… hopefully I don’t need it anymore.

“You’re body’s not stable yet and I don’t want you going back to work. How about this… get another CT scan mid-March with blood tests a couple days before that. Once I get the results, I’ll give you a call. If everything’s normal, we can schedule a time for your port to be taken out and we’ll discuss when you can go back to work. If there are issues, we’ll go from there.”

Relief. Huh? I feel relieved? Tilting my head to one side, eyes glazing over, I analyze myself. Why do I feel relieved? I thought I _wanted_ to go back to work. But then again, my body is progressively getting more and more tired these past 10 days. Honestly, part of me is scared to return to work. How can I serve my patients if I can barely stand for 10 minutes without my legs shaking? My hands are strong; however, standing drains all my energy reserves to zero. Even in sitting, my back is noticeably bending under gravity’s consistent pull. *deep sigh* “So, how much longer will I be off work for? I’ll need a new note for the extended time off.”

“I’ll write you a note to take off work until April 1st. If everything is clear after the CT scan and blood-work… you can always go back before April if you feel up for it. I’ll give you a call after your CT scan. After that, you need to get a CT scan every 3 months for a year. Get a lab test a couple of days before each CT scan. Schedule yourself to see me in three-and-a-half months.”

“Okay. Oh yeah, can you please check to see when the surgeon will come see me? He scheduled himself to see me at the same time as my appointment with you.”

One hour later... knock knock. I greet my surgeon. Formalities and updates complete, I drag myself back up onto the exam table. Deep breath, cold stethoscope.

“So, what’s your calorie intake in a day?”

Taken aback by the question, I blurt out “About 1400 calories I think.” I know my caloric intake prior to surgery averaged 1600 to 1800. When I was on chemotherapy, my caloric intake was approximately 1400 to 1600 depending on what snacks I could get me hands on. But now? I haven’t really calculated my food intake in the past 2 months. I eat until I’m full, mostly home-cooked meals, but eat fewer snacks due to my increasing dietary restrictions from food sensitivities. How many calories do I really eat?

On the drive home, I start listing my meals and add up the calories. Oops! Wide eyed, I realize one of the reasons why I may be so tired. I’m not getting enough calories to build muscle much less use the muscles I do have! How’d this happen? Well, cooking at home means less oil, less fat; therefore, less calories. Limited availability of packaged snacks also means less fat and less calories. In addition to my leaner meals, I’m down to 3, maybe 4 meals a day, so that I can manage my bodily functions and enjoy time out of the house. What does all this mean? My recent caloric intake is probably in the range from as little as 1000 to a maximum of 1400 calories. That’s way too little unless my goal is to lose more weight. =O No thanks… losing more weight means losing more muscle. No way do I want that to happen!

Father God, thank you for the wisdom you’ve given my doctors and the questions they ask!

Today, my neurology appointment was really neat. The neurologist you placed me under was super nice and I again learned that I’m not very standard. The numbness in my fingers and toes are not quite normal. Turns out that most people who get nerve damage from chemotherapy, the damage affects not just the toes but up the legs first before most people ever have issues with their hands. Yup, I’m different. *wide grin* But even if I’m never “cured,” I get this opportunity to learn so much!

So now, I have this coming month to get my diet and calorie intake on track. I want to increase my activity level while figuring out what ingredients are causing more issues… my body doesn’t like something I’ve been eating recently… I think I may be reacting to preservatives in canned and bottled foods. Good-bye gluten-free soy sauce. *sniffle* Good-bye to most canned coconut milk. Good-bye to sulfa-based preservatives in fruits and snacks. *deep sigh* I thought this day might come, but I’ve been avoiding it. However, my body is acting up so much, even to only home-cooked foods, that I don’t dare continue. What does this mean? I’ll be limited to spices in my cupboard, beef and pork, fresh veggies, tofu and soy, limited types of fruit and the only bread or cookie products I can eat are the ones I make. =O

Well, at least I can still eat!

So Father God, thank you that I never stop learning. Thank you for giving me a brain that loves to analyze puzzles. Thank you for giving me the stubbornness to keep plowing forward. Thank you for giving me a body that keeps my doctors on their toes. Thank you for opening my ears to hear and eyes to see what options I do have. Thank you for uniquely making me me.

When I’m feeling depressed from the constant fatigue, I’m reminded that I’m so loved… that even 2-3 months ago, my body was way worse than it is now. God, you are amazing. When I don’t know what to do or how, you give me insight through those around me. When I feel trapped, you open doors. When I am weak, you let me rest. Even extraneous things like wanting to watch the Cirque du Soleil with Noel and I both not working, you bless us with free tickets from a friend. Things Noel and I didn’t even consider praying for, Lord, you provide. Father God, I get to be so blessed… I have no reason to complain! To be so very blessed in clearly seeing you so powerfully in action, to take so much joy in knowing you personally, to have so many prayers answered so clearly… Father, I truly lack in nothing.

I am blessed in so many ways that money cannot buy, that security and stability cannot offer, that I cannot earn by my own power… Lord, I get to see you.

Father, I see the dead brown grass on the mountains when it should be green and ask in the name of Jesus for rain, it rains. I ask for more rain, today, the sky opens and waters pour. I ask for provision in selling my jewelry… above and beyond all my wildest dreams, unplanned, over 60% of my jewelry is sold with 5 orders on the side the very next day. I pray for a consistent light source for my photography so I won’t have to chase after the sun and you provide an awesome deal on Craigslist with everything I need plus extra! When Noel and I ask that you will provide him a job when I return to work, we know you will answer… that until we return back to work, Noel and I get blessed with being able to vacation together at home: to support each other, to heal, to laugh, to rest.

Thank you for the honor of being able to see you in action: in my life, in this household, in this world. In you, I am whole, at peace and filled with unspeakable joy.

Thank you, Lord God, for a wonderful husband who I can laugh with. Thank you for family I get to spend time with. Thank you for friends who hold me up. Thank you, Lord God, that you are so undeniably real.

I am floored by your continued mercy. I fall speechless in the midst of your power. I lay overwhelmed by your blessings. To be so fully and unconditionally loved, I am in awe.

In the name of Jesus Christ, to you, Lord God, be all glory, all honor, all praise.

Dawn of Hope

I feel soooo much better today!!!  This is more like it!  Hurray!!!

Can you see that I'm happy?  *wide grin* This is officially a whole month since my last admit to Stanford for chemotherapy.  Each round of chemotherapy resulted in progressively extending my recovery time.  After a full month, I'm finally at the point where I can stand for 10 minutes!  Before this week, forget doing the laundry or dishes... my legs just didn't hold me up very well.  Standing on wobbly legs really takes a lot of effort.  Today, standing doesn't feel quite so difficult.  Yes!

This energy is sooooo awesome!  I feel like I can finally do something.  My energy boost likely comes from my acupuncture appointment today.  Every time I go see my acupuncturist, I leave feeling so very much better!

Hmmmm... What can I do?  I just finished an awesome time with my sister.  We discussed jewelry designs.  I got her help coordinating colors... I suck at knowing what colors go with what.  We even got a massage.  *drool*  So comfy.  My little sis is so awesome... she even bought a jewelry display to showcase my earrings!

Display?  A little something is trying to catch my attention.  Display.  Display.  Display. Jewelry display... I'll need one of those someday to hang my earrings at home.  Like my sister told me today, dangling jewelry looks so much prettier and dynamic than stuffed in little plastic zip-lock bags.  But more importantly, my tools are literally thrown everywhere!  The entire dinner table is covered with my jewelry stuff.  I just cleaned the table yesterday to make butternut ravioli with my friend, Aleesha... Now, the table's barely usable again!

Heheeeehehee... Ummmm... I've seen tools hanging similar to jewelry displays. Maybe I can make one?  Yes, I want to make one!  Looking left then right, I don't see anything that inspires me.  Standing up, I walk away from my nice warm parabolic heater.  Garage... There's gotta be stuff there.

Opening the garage door, I poke my head out.  Is it cold?  Nope, not bad.  The heat from my recently driven car's engine nicely warms up our garage. Yay!

Since I don't have to worry about the cold, I boldly step fully into the garage. Scanning left, I look at our wall of tools.  There are blocks of wood I can use... But I'm not interested in grabbing out the heavy machinery this late at night.  Still looking. As I let my eyes wander, I spy a little bag with bamboo cooking utensils poking out.  This pile is for donation.  Squatting down, I take a closer look.  Pulling out a bamboo spatula, I roll it around my hands.  Not bad, no sharp fibers.  Placing the spatula on the ground, I gently try rocking the spatula first one way than another.  Hmmmm, this really could work.  It rocks a little, but not too bad as a base.  What else?  One by one, I pull out and test all the bamboo utensils in order to find the most stable one. Ah, this spatula with slits will work great!  The wider head stabilizes the entire length without me having to make a cross-brace.  Sweet!

Swiveling around, I grab one of the least stable utensils, a bamboo spork. Heheheheeee, this one I can chop up and attach to the base like the trunk of a tree.

Back into the kitchen, I glance around.  By the sink, I spy bamboo stakes for when my orchids flower.  Grabbing the cleanest one, I stab the stick through the pre-drilled hole in bamboo handle.  Pause.  Hmmm, the bamboo knobs get stuck.  Do I sand the knobs down or use it?  Pondering the puzzle in my head, I walk back into the garage while swinging my newly acquired stick.

Walking over to the left wall, I lean over Noel's blue motorcycle and grab a saw.  I could use a rotary tool, but don't feel like making too much noise or dust at 10pm. Plus, I feel stronger, I want to test my endurance!  *wide grin*

Placing the spork on an elevated surface, I saw away.  2/3 of the way through, I switch the saw to my left hand for no other reason except to give my left arm, even though it's not quite as coordinated, a work out.  Thump, the spork's head falls off.  Cool.

Grabbing a chisel, I attempt to gouge a curve into the handle so the spork handle can fit midway onto the slotted spatula's handle.  Raising the hammer, I give the chisel a good wack.  Oops, a whole section splits off.  This isn't going to work.  *sigh*  I grab a heavy duty metal file and work the splintered end smooth.

"Hey, Noel, what kind of file is this anyways?  It works great!"

"I've had that file for years, it's meant to file plastic.  It can even file plexi glass."

Staring at the file in my right hand, I give it a look of respect.  "Ummmm, Noel, you don't use it anymore right?"  *fingers crossed*

"Nope, haven't used that file in years.  Go ahead and use it.  It's a very good quality file."

Yup, I coulda told you that.  I've used and abused this file to smooth everything and anything over the years... Wood, aluminum, my silver (before I got some dedicated needle files)... even hardened steel.  *sheepish grin*   "This is a great file."

"Hey, Noel, what can I use as pins?  I can't cut this wooden handle into a nice curve, but I can glue and pin this cut bamboo onto the base.  Although, this handle really is not thick, the pin will need to be pretty small. Do we have anything that's thin and strong?"

"How about a nail?"

"Ahhhh, great idea!"  Scurrying over to the far wall, I dig through our stash of loose nails.  Perfect, two small nails.  Sticking these nails into my mouth, I reach with my left hand and grab the drill bits while my right hand snags the drill.  Quickly, I insert the smallest drill biting, carefully matching the nail's width (keeping everything a little snug) and length.

Bending forward, I line up the two handles in a "T" formation, brace myself and drill two neat little holes.  Grabbing the largest 1/4 inch drill bit, I drill another hole halfway up the spork handle. That should do it!

Happily I replace all the tools and head back into the house.  Applying a little wood glue, I jab the nails through the small drilled holes.  Mallet.  I need a mallet or hammer... The nail really is snug... banging the nails against the floor isn't working.    Back in the garage, I grab a mallet.  Thump.  Wack. Done!  The stand and the base are fitted perfectly like an upside-down "T."

Pulling out the saw, I cut the bamboo stick into 2 uneven pieces.  Sliding these sticks into the large holes, I pull until everything fits snugly.  Awesome!  If I ever wanted to break this tool stand down for transportation, I can at least remove the bamboo sticks.  Nice, unintentional bonus!

Now to hang all my tools.  Hurray!!!  With the handy use of some tape and a cut paper clip, I'm able to even hang my flux brush and my favorite flat needle file.  Taping a thread loop to the back of my sharpie, I'm even able to hang the pen onto my tool frame for easy access and display.  Success!

Lord, I've been worried because my strength and endurance are so low a whole month out from chemo.  Every time I wanted to try something, I didn't have the energy.  Feeling like a blob, I've been laying in bed, unhappy, since I didn't have the strength to perform basic household activities like cooking or cleaning.  Even sitting still to make jewelry isn't keeping my full attention when I yearn to do something else!

God, thank you so very much for the energy I have tonight.  I'm so excited!  Thank you that I'm able to create something productive with the time I have.  Thank you for making this project successful even though I didn't plan out all the steps.  God, thank you for the random materials, an abundance of tools and especially the strength to use these tools!

Father God, thank you for the renewed hope that, yes, things _will_ get better.  My body will get stronger.  That I'm not going to be stuck in my weakened state for life.

Thank you that even with my body's ongoing instability, I haven't taken any medications for 4 days!  Yay!

God, even with all your blessings, I'm still scared.  I will see my oncologist this coming Monday.  From what I understand, the doctor plans to stop the intravenous chemotherapy and start me on a new oral chemotherapy.  Another round of treatments.  I'm tired of taking medications.  Tired of my body being out of control.  Tired of the unknown.  Tired of not feeling well and always being drained.  Tired and fed-up with not knowning what to expect day to day.  *deep sigh*

God, at least one thing I do know.  I'm so far from my pre-chemotherapy baseline and energy levels that I need you.  When I hang out with family or friends, I need you to stand by... to give me energy... to make my body behave so I can enjoy my time when people are around or to even make a trip out of the house.  So many things I used to take for granted, now I treasure every instance of freedom.

Lord, at this point in time... I can feel the presence of everyone's prayers and blessings towards Noel and I.  All the support, the hope, everyone's encouragement... Father, I can feel your warmth, your smile, your love... Lord God, somehow through all this, I feel safe.  I believe that when the time is right, you will heal me.  I don't know when or how, but I trust that you will work a miracle... That you are not calling me to live this life in this weakened state for forever.  Thank you for your mercy!

Father God, to you be all the glory and hope and praise.  In Jesus' name, I give you my hopes, my dreams, my health, my life.  Amen.  

Addendum:  my neurology appointment got moved to Feburary 26th and I will discuss the removal of my port this Monday with my oncologist on Feburary 10th.

Thanks for supporting me in my blog, in my jewelry-making, in my life!  I made my goal of selling 10 pairs of earrings and now plan to move on to making rings and bracelets.  Hurray!!!