Withdrawal

3rd week of December 2015

Listlessly I lay in bed with Noel sleeping by my side.  I can't sleep.  I feel too hot.  Shoving the blankets aside, I attempt to cool down.  Now I feel cold.  I pull the blankets back over my body.  Huffing in annoyance, I roll right and then left.  Constantly glancing at the clock, I watch as minutes tick by.  So slow.  The night is long.  Nausea and fatigue intermingle into a general sense of discomfort.  My abdomen spasms on and off all through the night.  I clench my right hand into a fist, there is no strength.  What in the world is wrong with me?  

Outside, I hear the rain fall.  *plop plop plop*  A steady hum of water hits the roof, rolling off the eaves onto a nearby bush, splattering against the ground. Rolling my head left, I watch the sky change colors: pale glimmer of light melts into a striking rose-orange sky.  The rain's gone.  Droplets of water coat the fine leaves of the pepper tree.  A breeze shakes sprinkles of crystal water to join the many puddles on the ground.  Morning sunlight brightens the land with shimmering shards of light.  Sparkling translucent beads of water glisten on lace-like leaves.  

I'm still awake.  Noel stirs beside me.  More time passes.

"Noel, I hate not being able to sleep!  What's wrong with me?  This is the second day in a row!"

"When did you last take any pain medication?  Could it be withdrawal from the narcotics?"

I freeze.  Withdrawal?  Sure I've been sweating so much my clothes are drenched, my body switches hot cold hot cold at completely random times, occasionally my heart races fast, and my body has absolutely no strength.  Last week, I stopped taking methadone to manage pain because my body started reacting by retaining fluid.  I got scared; gaining 5 pounds of fluid in two days is not normal.  I switched to fentanyl lollipops and was up to approximately 500mcg of the stuff a day, then stopped abruptly due to more swelling (my abdomen protrudes and is firm with fluid, both legs almost doubled in diameter, and I gained 8 pounds in less than a week).  Both methadone and fentanyl can be addictive.  I could very well be going through withdrawal symptoms.  *shudder* I would never dream of having to deal with physical addiction to medications.  Yikes!

Father God, thank you for Noel's comment about narcotic withdrawal!  I feel so much better now that I take a couple licks of my fentanyl lollipop when I hurt or start to feel cold.  Lord, I'm still scared about the excess fluid retention in my body... there's still 6 pounds of fluid in my abdomen and legs!  God, I'm also scared because my right hip is starting to hurt like my left one used to... there's also slight tingling in my right leg that copies the same pattern on my left leg.  My left leg permanently tingles and is constantly weak, will the same thing happen to my right leg?

Lord, my body continues to change, new issues keep cropping up.  Father, I don't know where this body is going or what else I need to do.  Please help me!  Give me the strength and wisdom to do what needs to be done.  I no longer see the acupuncturist for any follow-up care; God, I am completely at your mercy.  I'd love it if you'd heal me!  Regardless, whatever path you call me to walk, I will go.

Thank you, Father God, Jesus, Holy Spirit for giving me this opportunity to personally know you more.  Only by leaning on you am I able to make it this far.  Never let me stray from your side.  In Jesus' name I pray, amen. 

Merry Christmas everybody!  May the knowledge of Jesus Christ's birth fill you and your family and your friends with peace and joy as we celebrate the arrival of God's promise on earth.

Are you Okay?

Wednesday, December 2, 2015

It's 5am in the morning and I'm still awake.  Annoyed at my inability to sleep, I roll to my right and stare at my husband, Noel.  Fitfully, Noel shifts onto his back then tosses his whole body in a quick spin to his left.

"Ahhhhhhhhhhhhhhhhhhhhh... I'm falling!"  I watch in confusion as Noel grasps at the air.  Low guttural sounds and desperate panting fill the air.  Quickly, I grab Noel's hands.  Is it a nightmare?  Is he asleep?  Turning on my bedside lamp, I gaze at my husband.  His eyes are tightly shut.  His entire body is frozen rigid with tension.  

"Noel.  Noel, open your eyes and look at me!"

Eyes open and looking into mine, I observe Noel's eyes flick rapidly right and left (nystagmus).  He squeezes his eyes shut.  "Everything's spinning.  So dizzy.  Dizzy!  I feel like I'm falling!"

I don't know what to do.  Noel's not dreaming, he's awake.  What's going on?  "Noel, feel my hands, I'm not moving.  Keep your eyes shut.  Your body is laying in bed, not moving.  Nothing is moving right now.  Take deep breaths.  Breathe."

God, help!  I don't know what's wrong with my husband.  Give me wisdom, keep me calm.  In Jesus' name I pray, amen. 

Slowly, Noel calms down and drifts off into a light sleep.  Alertly, I lay watching him for any reoccurrence of whatever just happened.  Nothing.  Bit by bit, I allow myself to relax.  I watch as Noel rolls onto his back.  Again, he cries out and grasps the air.  Again he calls out, "I'm falling!"  Again, I grab his hands and speak softly but firmly as he calms down.

Over and over again, I observe Noel desperately wail in fear; his voice tortured with distress.  Every turn of his head, he gets dizzy.  Lack of movement allows him to calm down.  Light and moving objects make him nauseous.  

Thank you God all my siblings came to visit today!  A moist hand towel is applied over Noel's eyes and tied in place.  I find a YouTube video describing BPPV (benign paroxysmal positional vertigo), a disorder where crystals in the inner ear get stuck and send wrong signals to the brain that the body is spinning.  The video also shows the Epley maneuver, uses gravity in an attempt to clear the crystals back into their original position; there's a high chance that it won't work to completely alleviate Noel's symptoms... But a whole day of watching my husband flinch, groan, cry in distress tears at my heart.  His skin is drawn, pale, and covered in sweat.  He can't continue like this!

My brother, Winston, guides Noel's head to the left and helps him lay down with his head angled backwards.  Immediately, Noel panics as vertigo assails his senses.  My youngest brother, Christopher, holds a pink hospital bucket to Noel's face as he vomits liquid bile into the container.  Calmly, I command Noel to focus on his breathing as he continues to heave and groan; there's nothing else any of us can do.  As the vertigo settles, Winston guides Noel into the next step of the Epley maneuver.  Again, Noel throws up.  This time, my sister, Jessica, grabs the bucket, holding it for Noel.  Step by step, we continue.  I don't remember how much time passes by but the air is thick with tension, bile scents the air.  We work together as a family and repeat the maneuver until Noel only vomits twice throughout the procedure.  Enough is enough... I don't think Noel can take any more repetitions.  At least, Noel can now sit back, open his eyes nod even turn his head a little.  Progress.

Thank you, Father God, for providing Noel's mom to take care of both Noel and I as we lay weakly in bed: food served to us warm in bed, jello, cool towels for Noel and massages for me.  *wide grin*  Thank you, God, for family willing to be a part of the messiness of being sick.  Thank you, Father, for a co-worker's suggestion to use vibration with the Epley maneuver; Noel can now freely whip his head right and left without vertigo!  Lord in heaven, thank you for my increase in strength this week so I can crawl with more ease in and out of bed.  Thank you for loving us so much that even in the darkest times when both Noel and I are hopeless and helpless, you are working to provide for our needs!

Thank you everyone for your support and prayers!  I am able to continue in my struggles through the protection and strength you provide through your prayers.  Because of you all, I am where I am today.  Thank you.  *deep bow*

Prayer request:

1.  Noel can freely move, turn, spin without any unusual residual vertigo or headaches or fatigue.

2.  I need to face the pain of massaging the hardened fluid over my abdomen so the swelling will go away... and pray that it does.  

3.  Currently not taking the methadone for pain management since this medication is the one causing severe fluid retention.  May God help me manage my pain in place of the methadone.

4.  I'm considering placing acupuncture on hold so that God can work in my body and demonstrate his hand at work in my health over any human intervention.  

5.  I want to clearly hear and follow God's guidance in all my health care decisions.

Kristy flopping by the heater with Rogue:

Blurred Times & Thankful Times

Sunday, November 22, 2015

My mind isn't completely here in the present.  Every night, I wake up every hour.  Sometimes I can fall back asleep, most times, I'm alert for 30-60 minutes before drifting off.  In the morning, Noel places warm breakfast on my chest and Chinese herbal medicine near my head.  There are days when the bowl of food sits on my chest as I zone in and out of consciousness until everything is cold.  Today is one of those mornings.  There are other times when my eyes open enough I can cram food in my mouth in an attempt to avoid my stomach from spasming.  My stomach chooses to spasm anyways.  *shudder*

I dislike eating.  Or rather, I fear my body's ever-changing reaction to food.  Day by day, meal to meal, I can eat the exact same thing with completely different results.  Sometimes there's satisfaction with a good tasting meal; more often then not, there are spasms that stab through my body.  When spasm happen, I freeze.  My mental capacity drops.  Usually the pain is short, not worth taking more medications. Sometimes, the spasms roll through like labor pains.  I've learned, rolling spasms contract stronger until the point where breathing is difficult and mindless groping at blankets becomes ineffective.  

This week, there are many instances of pain outside my control.  In the daytime, I usually sleep.  It's pretty random, but even a half hour conversation with me laying in bed requires a time of rest.  Sitting up for 1-2 hours mandates two naps and approximately 12 hours in bed.  An outing like an appointment or eating out requires at least 3 naps and leads to approximately 36 hours or more of bed rest before my brain becomes completely lucid. 

Nowadays, I'm always tired.  I hoped that receiving proper pain management would allow me to increase my daily activity levels, allow me freedom outside the house, give me the energy to start exercising again.  Instead, my left leg is partially numb with a constant tingle.  I walk with my left foot scraping against the ground, my trunk swings to compensate for my hip's inability to hold my weight, and my posture still isn't upright.  My energy is nonexistent.  My personal hopes and dreams for myself are destroyed over and over again as new issues arise.  There's nothing else I can do but pray for a positive attitude, patience, wisdom, and courage to face the new challenges.

Lord God, I know my body can get much worse.  I thank you instead for the physical abilities I do have.  You gave me the strength to survive the trip to my parents' home for Thanksgiving dinner.  You've blessed me with an amazing loving family and a husband who continually serves all my needs.  Thank you for blessing me with Noel who watches me and anticipates my desires.  You gave me a husband who is willing to listen to my problems and allow me the space to figure out what to do.  

I am a woman blessed beyond measure.  My body may fail, but Lord, you help preserve my heart and my mind.  Thank you for giving me the courage to make tough decisions.  Thank you for giving me the wisdom to manage my body.  Thank you for the hours I got to spend in your presence reading more about you through the Bible.  Thank you for times of peace and quiet where I can rest myself in your arms.  Thank you for always being there, always loving me.

In Jesus' name I raise my voice in praise, amen. 

Photo shoot with Noel by Peter Shen:

Sibling pic at my parents' home:

Hawaii

Tuesday, November 3, 2015

Brisk breeze.  Warm sunlight.  Gray clouds chasing each other across the sky.  In the distance, I hear waves crashing.  Sharp rays of light reflect from teal water, piercing my eyes.  White foam tips the crest of incoming waves.  That's where I'm going, to the beach!

Grasping Noel's left arm with both of my arms, I straighten my back and fix my eyes on the ocean.  I'd like to say that I walked 300 yards to the beach with ease.  That's not the case.  I can't stand on my left leg anymore.  My left foot droops and drags over the grass.  As I attempt to bear weight through my left leg, my knee wants to collapse and my hip gives out.  With every step of my left leg, I lean into Noel so that he can bear my weight.  Going uphill, Noel leads first so that he can physically drag me along behind him.  As soon as we hit the sandy beach, huffing and puffing, I point to the sand at my feet and demand Noel set up right there.  I'm not moving another step (actually, my legs are shaking so bad I can't walk any further).

Sprawling on the beach mat with a friends' tent providing shade, I stare at the world around me.  This world is amazing.  The ocean changes color by it's depth.  Palm trees rustle in the wind.  Birds sing.  Surging water swirls against the shore.  Cream sand tumble over and over in ever smaller specks.  Clear little crabs scuttle across sand and dig holes to hide.

Here I am, on the beach in Hawaii.  This is a dream come true thanks to all the prayer support!  My body continues to act up in new ways, new problems.  However, I believe that because so many people are praying for me, I can still move.  I can walk household distances with a limp.  I can still, if barely, step up 14 steps while leaning on the rail.  I can now stand almost upright with the use of pain medicine.  I can still use my sight so that as my numb left foot shuffles over the ground, I can avoid tripping.  Even as my body continues to break down, I see the power of prayer and rejoice in watching God step in to provide when I need it most.

Thank you all for your amazing support!  I know I am blessed by your friendship, your love, your prayers, your physical and financial support, your words of encouragement.  Because of all of you out there, I can strongly face my disabilities, seek God first, and fight my way onwards.

May all of you be blessed to see God's unwavering love and faithfulness clearly in action in your life and the lives of those around you.  Be blessed with unconditional joy, deep peace, and the overflowing love of Christ.

See you in my next blog post!

Love,

Kristy

Palliative Care

Wednesday, October 14, 2015

Noel extends his left hand while holding the car door open with his right.  Grasping his outstretched hand, I swivel my body towards Noel.  I hook my left hand under my right leg and heave up.  My right leg flops outside the car.  I repeat the same motion with my left leg.  Now, I'm ready to use Noel as leverage to stand up.  

Can I stand up by myself?  Yes.  Do I want to?  No.  Let's just say that after a bumpy car ride, I hurt.  I pick which battles to fight.  Getting out of the car is not high on my priority list.

Upright, my torso bends forward so all I see is the ground in front of me.  Leaning heavily against Noel's arm, I shuffle forward.  This is so much less painful than being rolled in a wheelchair where each bump in the ground is exponentially magnified.  Clutching tight, Noel half drags me up the ramp.  My thighs are burning.  My knees shaking.  With determination, I scrape one foot forward in front of the other.

On flat ground, my legs are ready to collapse.  Did I really used to play paintball and rock climb?  Not in this current body!  Maneuvering myself behind Noel, I throw both arms across his shoulders and lock my hands together against his chest.  With most my weight being carried by my husband, we make it to my palliative care appointment just in time.

After being repeatedly told by staff at Stanford Palliative Care that Santa Clara Valley Medical Center does not have a palliative care team, I meet 4 staff members in the Valley Med Palliative Care department... and this team is amazing!

Unlike my hospice experience, the people I met in this one day alone made me feel human again.  My needs, my struggles, my heart... this group listened with open ears, accepting hearts, and richly positive but refreshingly honest attitudes.  Today, I feel safe.  I feel hope for pain management options.  I see doors open for Noel and I to discuss the "what if I die" issues.  I feel wholeheartedly supported.  

Father God, thank you for this amazing blessing to meet the staff within the palliative care department. Thank you for renewed hope in dealing with my pain.  The doctor wrote me for a trial of fentanyl lollipops, but even though denied by the insurance, the palliative care team is so on top of communicating with me and fighting for me that I am honored by their service above and beyond anything I expected.  In the meantime, Lord, you provide a trial of liquid methadone for pain management and a medical marijuana extract spray that lowers my pain from a brutal stabbing sensation to a strong ache.

Father, thank you for the pain management options.  Thank you for time to try the medicines before leaving to Hawaii.  Thank you, Father God, for providing the ability to manage my pain so that I can travel more comfortably.

Lord, I can see you so clearly through the timing and provisions of receiving my medications.  I am blessed in abundance by so many family and friends who so completely support Noel and I.  You provide people who enable Noel to take breaks from constantly caring for me.  The new medications allow me some level of comfort such that Noel doesn't have to watch me writhe in pain.  Lord, I lift your name in praise.  You make the impossible possible.  You continue to shape my heart and my mind to know you more.  

Give me the wisdom to properly manage my body in a way that brings you honor, demonstrates my trust in you, and shows that you are real in my life.  Teach me to pray so that your power is visible on earth as it is in heaven.  Help me to have the courage to share the amazing stories of you in my life.  Guide me, Lord, so that all glory and honor are yours.

In the name of Jesus Christ, I thank you for calling me your child.  Thank you for loving me.  Thank you for sending your Spirit to walk with me.  Thank you for never letting me go.

In the emergency department to get checked out for a new bleed.  The bleeding stopped as soon as I got to the hospital.  Ah well, God took away my pains and aches without any medical intervention while I was resting:

Hit Hard

Tuesday, September 29, 2015

It's almost bedtime. I can feel the pressure start.  The twisting discomfort.  I stack up three pillows, stuff them over my abdomen and curl up face down.  Rocking my body right to left, left to right, I attempt to ride through this ordeal.  Tighter and tighter I can feel my insides twist.  Spasm after spasm until the pulsing becomes continuous.  Cold sweat breaks out over my face.  Panting for air, I mindlessly squeeze my eyes shut and rock.  Faster.  Faster.  The pain's ramping up so quick.  I think I hear moaning.  Is that me?  My hands claw at the bedsheets.  No comfort.  Trembling, I do my best to stay sane. None of my usual tricks are working.  Gasping hard as my insides twist, I open my eyes in an attempt to distract myself. I see Noel standing besides me, afraid to touch me for fear of causing more pain, awaiting instructions.

"Noel.  Morphine.  Liquid in brown bottle.  2mL."  

Through the ringing in my ears, I think I hear cabinets banging, footsteps thumping up and down the stairs.  Frantic movements.  "I can't find it!"

"It's in a brown bag.  Grab a syringe.  Add 2 more mL."  Forget my sulfate allergy, it's either morphine sulfate or the emergency room just for pain management.  I'll take the morphine.

A syringe filled with blue-green liquid appears to float in front of my face.  With shaking hands, I grab the plastic and shove it in my mouth.  Quickly, I push the plunger and swallow.  The syringe disappears, I don't care where nor do I care what the medicine tastes like.  How quick before this thing works?

Rocking back and forth, I continue to claw at my pillows and bedsheets.  Do these destructive tendencies help alleviate the pain?  Nope.  One minute passes by, two minutes, three minutes... It hurts so much.  I need to throw up.  Noel half carries me to the toilet.  Inelegantly, I sprawl my arms across the toilet seat and lean my head down.  Must not throw up.  Must not throw up.  I don't want to waste my medicine and the food I barely swallowed earlier still leaves me with less than 1000kcal (calories) for today.  That was supposed to be my last meal. 

My nose is stuffed.  I'm fighting my instinct to throw up.  I keep rocking my body.  Nothing's better. Is there a magic wand?  I ask Noel to pray for me, but I can't hear him.  I can't hear anything through the pain.  A little longer.  I have to hold on just a little longer and everything will be better.  Breathe.  Ahhhhhhh, that hurts.  Everything hurts.  I think Noel walk-carried me back and forth from bed to toilet 2 times.  Maybe three?  I can't remember. 

I'm proud to say that 20 minutes later, the pain start easing up and I didn't throw up!  My abdomen is tender, feels bruised.  I can uncurl to my standard 90% almost straight posture.  I feel like a heavy lead object sit in the right side of my abdomen.  The insides are still quivering in the aftermath.  I have no idea what just happened.  Did I eat too much food?  I only ate 2/3 of a meatball and less than half a small fistful of rice in watery soup.  I'm still reeling in shock.  The intensity of pain and speed of onset left me breathless.  4mL of morphine is barely dulling the edges of my pain.  An hour later, I'm still wide awake and gently rocking on my side of the bed.  Next time, maybe I should try 6-8mL of morphine?  Dunno, each bit of additional liquid is hard to hold down... There's no way Tylenol would've worked. 

Thursday, October 1, 2015

Today's special.  I should be super excited to celebrate our 10th wedding anniversary.  I mean... I should be bouncing around happy right?  We're going to Monterey Bay Aquarium!  Up to this point in time, I was hoping God would miraculously take away my pain, give me strength and energy to enjoy this special day... doesn't appear to be in today's plans.  *deep sigh*

Shuffling downstairs, I walk with my back bent such that each step resulted in me staring intently at the floor and my feet.  Noel opens the passenger door and I slip inside using momentum and my arms to help swing my legs inside. Immediately, I lay my seat back, kick off my shoes and bend my knees.  The seatbelt is looped over my knees to help hold my legs in place and keep the belt from squeezing my abdomen.  Noel gets into the car and starts the engine.  I tense my body in preparation for the discomfort. Even with a borrowed car and softer suspension, every bump vibrates through my body.  I tighten my knees towards my chest in an attempt to minimize the internal shifting of my gut.  Yes, when I roll to the left or the right, even standing up, I can feel the weight of my tumors slide heavily inside, dragging downwards with gravity.  Gross.

Clenching my eyes shut, I lock my jaws tightly together as air hisses between my teeth.  This car ride is not pleasant.  

Arriving in Monterey, my excitement isn't for the actual arrival but the surcease of pain.  Yay!  Thank God I made it to Monterey!  Hopefully, the rest of the day will go smoother.  

I spoke too soon.

Sitting in the wheelchair, super soft cushion under by bottom, Noel pushes me towards Monterey Bay Aquarium.  Yay!  Not.  Every bump sends jarring pain slashing through my abdomen.  Clenching my teeth, I do my best to curl up and endure.  Enduring doesn't work very well.  Time drags on forever. Bumpity bump bump.  Concrete slab seam after seam slowly passes by.  I don't remember the scenery around me, just that I was so grateful to reach the aquarium.  I'll be safe and more comfortable indoors!

Noel, patiently pushes my wheelchair at a snail's pace.  Really, yes, a snail's pace.  Over the hurdle of the aquarium's threshold, I open my eyes... only to see a sea of rough tiled stone spread before me.  Are you kidding me?  Indoors is worse than the concrete walkways outside?  I stare in disbelief. My heart sinks.  

"Well, Noel, let's head to the otter tank."  Inch by inch, Noel carefully pushes me forward.  By the time we reach the otter tank, I was in so much pain that tears leaked out of my eyes.  I hug Noel crying and hiding my tears in his shirt.  Today is not what I expected.  

I wanted to walk with Noel through memory lane, to spend time in awe at God's creations and wonder at the weirdness of this world's animals.  Instead, I am so blinded by pain and tears that I can barely see much less appreciate anything around me.  Even the aquarium elevators have the same rough stone tiles.  Thank you, Noel, for getting me around the shortest way possible!  

In the actual side section of the aquarium, there's rug!  Yes, oh yes... rug.  Hallelujah!  That part will be smoother right?  Settling at the very start of the Open Sea section, I sit and watch anchovies go around and around and around.  Noel must be bored out of his mind.  But I don't want to move yet.  Not because the anchovies are that fascinating, but because I'm hurting so bad that I just don't want to move.  My insides are sending signals of sharp agonizing jabs, heavy aches from all my larger tumors, and my head hurts.  I just want to zone out and not be a part of this body anymore!  Tylenol?  Took two.  Didn't work.  Don't dare take more morphine, it'll unstabilize my body and cause me to get itchy. No thank you.

On to the next exhibit, super large tank with hammerhead sharks and tuna!  *drool*  Tuna is yummy.  Sushi!  Again, I delay and sit at this exhibit a lot longer than necessary.  Every time we stop at an exhibit, no matter how uninteresting or small, I delayed.  It hurts to even have the wheelchair slowly roll over rug.  I'm miserable.  Can I just sit at one exhibit and not move?

We eventually finish with the right side of the aquarium.  No way are we going back over that rough flooring to get to the other side.  So sad.  I love the kelp forest, but the additional pain is just not worth it.

Father God, what are you letting happen to my body?  Couldn't you make today pain free so Noel and I can laugh, smile and enjoy each other's company to celebrate our 10th anniversary?  Noel pushes me so gently, so slowly... but I hurt too much to even look him in the face much less smile.  The whole day I just wanted to cry.  What must Noel feel like dealing with my brokenness?

God, thank you for blessing me with an amazing husband over these 10 years.  Thank you for giving me a man who is willing to take charge as head of the household, pay the bills, serve me food in bed, let's me hang on to him as I walk up and down the stairs.  Lord, thank you for my husband's loving heart, gentleness, patience.  He stands beside me as I cry and moan in pain, watching me as I break.  Thank you for providing my husband as a physical anchor to the present.

Lord, today is not a fun day... but again, you show me just how amazing my husband is.  Thank you for his love.  Thank you for letting him be by my side.  Thank you for his integrity, selfless service and hard work to make me laugh.  Thank you for growing both of us over the years to become more together, more patient, more understanding.  Thank you, Lord, for teaching me what it means to respect Noel and him what it means to love me.  Lord, thank you for the treasure of Noel you place in my life this 10 years and more.  Help me live and treasure each day with him as if it were our last. 

To God be all the glory.

Outside Monterey Bay Aquarium:

By the Open Sea exhibit with bluefin tuna:

Hospice

Thursday, September 24, 2015

I'm totally late!  My acupuncture treatment ran overtime.  I'm late for a 1 o'clock appointment at my house.  It's 1:14pm now.  Pushing the door open, I propel myself out of my dad's car.  Shuffling over to my front door, I greet the lady who's been patiently waiting.  Hastily, I reach out my right hand and give hers a firm shake.  Inviting her inside, we settle on the couch. 

"So, what's today's appointment about?"

"Your doctor referred you to our services for hospice care."

Wait.  Wait a minute!  I know I requested palliative care after discussing the difference from hospice with a nurse at Stanford.  I thought the nurse was going to request palliative care referral from my cancer doctor so that I can discuss options in pain management?  What happened?  Cautiously, I speak up the clarify what actually got ordered: "Hospice can only be requested when the patient is expected to pass away in less than 6 months right?"

"Correct.  Under hospice care, your insurance pays us a lump sum and we take care of all your needs.  No more chemo or surgeries.  Nothing to prolong your life.  When you sign these papers, you're agreeing to request any needs that you want met to be carried through our company.  At any time, you can back out of hospice care."

Still in shock that my cancer doctor considered my lifespan to be less than 6 months, I sign all the papers placed in front of me.  After all, I do not intend to go through any more chemotherapy and surgery is already out of the equation.  Sure, why not try hospice?  The concept of people coming to my house for services I need met is very appealing.  No more driving out to clinics or being exposed to bumpy car rides for appointments.  Great!

Friday, September 25, 2015

*ring ring*  My cellphone buzzes next to my head.  "Hello?"

"Hi Kristy.  This is the nurse manager from the hospice care company.  So, the doctor wrote you for prescription hydrocodone.  You take these pills every..."

My mind blanks out.  Hydrocodone... this medicine sounds so familiar... ah, it's Vicodin.  I hate that stuff!  Not only does it not cut out the pain for me, it makes me unable to even walk.  "Sorry, I'm not going to take hydrocodone.  Is there any other medicine I can take for pain that would still allow me to moderate my own dosage so I can function at least around the house and be a medicine I can take even if I'm throwing up?  The only thing I can think of on my end is fentanyl lollipops; can I get that?"

"I'll talk to the doctor again but fentanyl lollipops are very expensive.  The hydrocodone should work just as well."

Frustration!  With God's help, I'm able to achieve a very carefully balanced lifestyle of eating, getting burped by Noel, exercise, toilet, sleep, and repeat.  Anything that throws this body off-balance is likely to cause excruciating pain.  Not happening!  This is why I don't take even Tylenol in the first place.  Any dependence on pain medications will cause constipation, then bowel obstruction, nausea, more pain requiring more meds... and the horrible cycle will not end in me being functional.  In fact, I can just imagine myself lying in bed so drugged up that my body becomes a living doll until my last breath.  How will I honor God and show trust in him in that state?  

Lord, this hospice care doesn't appear in line with my personality nor the path you've called me to walk.  Father, as I writhe in pain, even now, this hospice company's offer of unlimited pain medication until I fade away sounds so appealing.  But Lord God, I want to honor you with every moment that I still breathe.  I want this life, not to fade easily away, but I want to care for this body to the best of my ability so that I can continue to walk with you while on this earth.  Lord, I trust you to manage my pain.  I trust that if this body hurts more than I can handle, you will either provide the right treatment, medicine, or by your power step in so I can experience relief.  

Father God, my goal is not my own comfort, nor is my goal to serve my own pleasures; instead, Father, I want to show the world that walking with you is so amazingly wonderful that it is worth the pain to stay alert just to gain a glimpse of you.  I don't want to just fade away and give up.  You've only given me this one life on this earth, in this body.  Until my very last breath, and even after that... Father, I believe you have the power to do exactly what you want in me and in this body.  I am satisfied dwelling in your presence.  You may choose to heal me or you may not, but this journey I walk with you is precious beyond compare. 

Lord, thank you for always being there.  Thank you for this time Noel can take off work to take care of me day and night.  Thank you for beloved family and friends who help cook, clean, and distract me with stories.  Thank you for providing financially as so many people have opened up their wallets to help us out.  Father, when you provide, nothing stops your generosity and your crazy abundance.  Lord, in your presence, I lack nothing.  My spirit is overflowing with joy as I see you every single day step in to care for me.  Father, into your hands I continue to entrust my fate, my life, my spirit.  Do not let me break.  Give me strength to face hardships and pain.  Give me peace and joy as I dwell in your presence.  Give me your full attention as I walk with you.  Carry me when I can't move myself.

In Jesus' name I pray, amen. 

"Sorry, I don't believe hospice is appropriate for me at this point in time. I would like to cancel your services.  I do not feel God calling me to load up on pain medications just so I can be physically comfortable.  Thank you for your time."

Click.  No more hospice.  There's still so much to do.  I still plan to get stronger and return to work.  I plan to complete my backyard project with my neighborhood friends.  I plan to modify more recipes and eat healthy.  I plan to get back on my feet to play paintball besides and against my husband.  This cancer may or may not be the end to my life.  I trust God to help me live to my fullest potential.  I plan to live until the day I die.  

My cat, Mika, is heavy!!!

Gluten Video Challenge III

I hope this is the last time I purposefully ingest gluten.  This week isn't as bad as the week before, but it's definitely not something I can label as "fun."

My acupuncturist wants me to hold off on gluten now to get a better assessment of my body.  Yay.  Praise God no more gluten for this upcoming week!  I am soooooooo thankful.  Instead, I get to boil herbs for a Chinese medicine drink twice a day.  *shudder*  At least, this time isn't as bitter.

Thank you, Father God, that even though my tumors are still present, eating still leads to pain... that in the midst of all the struggles and the unknown, you continue to provide.  Thank you for times with no pain.  Thank you for distracting activities.  Thank you for wonderful family and friends who keep me occupied.  Lord, you provide so abundantly that I truly lack nothing.  Thank you for providing Noel by my side to soothe me, cater to my whims, serve me food while I flop in bed.  Lord, you are good.  In you, I am satisfied.  Thank you for this life I get to live.

In Jesus' name I raise my voice in praise, amen.

Here's my video from Tuesday, September 22, 2015;
(https://youtu.be/xYwq5slgKGY)

Gluten Video Challenge II

Wednesday, September 16, 2015

Hi everyone!

I'm not feeling my best so this next blog post is also a video.  Here, I decide to trust God to protect me as I ingest 3 grains of barley.

Due to many amazing donations through GoFundMe online, I am able to see my acupuncturist twice a week to manage my increasing discomfort.  Thank you for your support that makes it possible for me to manage this body and the things God calls me to do with it.  *super big hug*

I will continue to trust in God as I step forward into unknown and potentially very painful territory.  Thank you for following my progress.

Here is my video:

Gluten Challenge Video

Wednesday, Sept 9, 2015

Hi everyone!  I didn't forget to write my blog... really!  I've been slaving away writing and deleting, writing and deleting.  *wry grin*  So... until I can get a post out that satisfies me and feels like it's where God wants me to go... please watch my most recent video in place of a blog.  This video is about my challenge with eating gluten.  =O
 

Living for my Reward

Wednesday, August 26, 2015

Today's the day I find out what options I have.  I'm sitting in the treatment room nervously twiddling my thumbs and swinging my feet as I wait for my cancer doctor.  In walks my physician's assistant holding a small sheaf of papers.  Holding out his right hand, he offers me the printed CT scan results.  

"Kristy, I assume you already read the results?"

"Yup.  I know my cancer is worse and the tumors are significantly larger.  No more Eribulin for my chemotherapy treatment."

"Yes.  As of now, all we have to offer you is either palliative care or application to clinical trials.  First, palliative care is not hospice; it is access to an interdisciplinary team of medical staff who can assist you with relief from the cancer symptoms so that you can maximize your quality of life.  Second, know that since you have tried 7 types of chemotherapy and none have worked, any clinical trial you participate in will likely have less than 5% chance of shrinking your tumors.  Those who choose to receive experimental treatments outside of their geographical area temporarily move to the clinical trial host site.  Are you willing to travel?"

Instantly, my mind flashes me a picture of living elsewhere: no family support, no friends to drop by, can't eat restaurant food, trying to grocery shop and cook while on chemo, stress of an unfamiliar location, additional living costs... the list goes on and on.  The instability of my body makes me scoff at the very idea of trying to travel long distance.  "Nope.  Can't to do it.  There's no way I'm willing or able to travel for clinical trials.  Traveling from Milpitas to Stanford Hospital already pushes my limits when I'm tired.  Living elsewhere, I don't believe I can manage my needs away from home."

The door closes softly as the physician's assistant steps out to speak to my cancer doctor.  I snuggle my head against Noel's neck.  Tears leak from my eyes.  Why am I crying?  The conversation went exactly as I expected.  My options?  Limited.  I furtively inch my right hand under my right cheek in an attempt to wipe away the moisture dripping down my face.  Doesn't work.  Noel's shirt is already damp.  Clenching my teeth, I endeavor to speak in a cheerful tone, "Noel, whatcha think?"  Tilting my chin up, I glance into Noel's eyes.  He's crying too.

Deep breath in... Dang it!  I didn't want to cry.  Now my tears are just coming faster.  Noel wraps his arm around me tight.  I can feel my head getting wet.  I'm sure Noel's shirt is damp too.  Together, we silently comfort each other.

Time passes.  

Shoot, the doctor will come in any moment!  Yanking tissue from the box on the table, I hand Noel some tissue, then stuff the rest against my face.  It's miraculous that not wanting someone else to see me cry can stop my tears just like that.  *sheepish grin* Making my face presentable, I lean my right shoulder heavily into Noel's left shoulder.  My hand creeps in to tightly clasp Noel's hand.  We wait.

My cancer doctor sweeps into the room with the physician's assistant quietly following.  Getting right to the point, my doctor states, "There's a clinical trial you can apply for.  It's a phase I trial combining a chemotherapy drug and another drug targeted to stop blood vessel formation.  I'm hoping that this will shrink your tumors.  Do you want to try it?"

Honestly?  No.  I'm tired of chemotherapy failing and leaving my body weaker.  I'm tired of getting my body broken over and over again while my cancer continues to run rampant.  Since April of 2007, I've gone through 3 abdominal surgeries.  From January 2012, I started my first round of chemotherapy and have failed every single one.  Now in August 2015, all that's left for me in the medical field is the proud opportunity to be a guinea pig through uncharted experimental drugs.  Lovely.

Taking a deep breath, I reply, "Sure, let's do this.  I'll sign the papers today."

Ah, Father God, Jesus Christ, Holy Spirit... help me!  I so don't want to do anymore chemotherapy.  I'm tired of breaking, getting weaker, increasing my dependence on all those around me.  Lord, I honestly don't care if I die.  Death means rest from pain, the dysfunctions of my body, and I believe that I'll get to be with you.  There's nothing wrong with that right?

Yeah, I know it's not yet time to leave this earth or else I'd already be gone.  *wide grin*  I'm not waiting to die.  I refuse to sit back and let my life, however long or short, slip by.  But I'm tired.  Cancer may limit my activities, my abilities, my energy; but Lord, don't let hopelessness or despair ever crush my spirt.

This is my battle cry.  This is my declaration of intent to fight.

I will fight with every fiber of my being to live and live well.  But what does it mean to live?  For me, living is not just an existence where I eat, breathe, sleep, play.  No.  Living requires purpose, a goal, direction.

Lord God, I made serving you, loving you, emulating you as my first priority in this life.  Because this life is yours, I am willing to walk through any path you call me to live so that in this life, you are truly Lord.  I will continue to trust you with the journey of my medical care.  My acupuncturist believes that this body you've given me is strong.  He says not to do chemotherapy because the poisons weaken my body and allow the cancer cells to replicate faster.  I believe him; I see my tumors rapidly increase in size the weaker my body gets.  Lord, I continue to choose any chemotherapy experiment that comes my way knowing that if you don't call me to walk that path, one way or another, you will cancel or invalidate my application. 

I surrender to your will so that you alone will shine as first in all choices.  I will live until you choose to call me to rest.  I will not surrender to my own wants, but will struggle and fight because you are my everything.  Lord, you are the love of my life. In you, I have complete trust in your goodness.  I blindly follow whatever path you call me to walk so that I can personally know you more.  You are my Father in heaven who hurts when I hurt, loves me unconditionally, shapes me so that I can grow ever closer to you... I will not waste this life to satisfy my own desires unless I can match it to yours.  Help me, Lord, live this life so completely for you that all the pain and affliction means nothing compared to being with you... For, God, you are my reward in this life and the next.

In Jesus' name I pray, amen.  

Thursday, August 27, 2015

Praise God!  My application to the chemotherapy experiment is canceled due to the drug containing gluten and alcohol which gives me severe allergic reactions.  Yay!!!  Until my doctor can find another experimental drug appropriate for my type of cancer, I am free to get stronger, to recover from years of infusing poison into my system, and wait to see what God chooses to do with my fast-growing tumors.

God, please stabilize my body and heal me like no one else can.  In Jesus' name I pray, amen. 

Saw this octopus tree with a knitted body in San Mateo:

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:

I Wanna Go Home!

July 19, 2015

Soft blue glow of ever-present monitors gently permeates the room.  Click.  The door silently creeps open.  Light from the hallway cuts a harsh bright streak from floor to wall, a stark contrast of white on blue.  There is no such thing as a dark hospital room.  Never.

With a pillow partially over my face, I call in a muffled voice "Come in!"  Is it my nurse?  I peek at the figure now confidently striding in; yup, that's my nurse.  What time is it?  4:20am; the perfect time to start a new day... not.  Argh, I'm getting more and more sarcastic the longer I'm in this hospital. 

I pop up in bed, open my eyes nice and big, and paste on a lively smile, "So, time for my vitals and labs?"

"Yup.  Orders.  Were you sleeping?"

"It's all good.  I'll sleep better when I get home."

Honestly, my patience is wearing thin.  My tolerance to nicely follow orders is badly fraying. My veneer of genial kindness is eroding too quickly to repair.  I can barely paste a square-edged smile on my face when I greet the hospital staff.  I can hear the biting edge of tension, sarcasm, and demand in my words.  Not good, my mask is slipping.

Uh oh, here comes the intern doctor.  She doesn't exactly look excited.  Kristy, be nice! Remember, she's just doing her job and my attitude can make her job easier or harder. Smile.  Be gentle!

"Kristy, your neutrophil count actually went down.  Your resting heart rate is back at 120 and we don't know why.  Sorry, but you won't be able to go home today."

My body freezes as I process the mandatory increase of my hospital stay.  Hopelessness seeps into my mind.  What?  Yesterday, my neutrophil count went up... it was supposed to keep going up!  God, what's happening?  I've been stuck here for the 3rd day already.  I know I said I would accept the doctor's decision, whatever that is, but I find my mouth moving before I can regain enough control to play nice.  As if from a distance, I observe myself pleading, trying everything in my arsenal to justify getting the doctor to let me go home.  I watch myself lose all control as I push limits, consider out loud leaving against medical advice (bad move, leaves a horrible impression on the medical staff), and desperately insist on regaining the semblance of control over my own life.

None of my arguments sway the doctor's decision.  She stands firm, an immovable wall of protocol and hospital rules.  The outcome of prolonging my hospital stay is set in stone.

I don't usually cry, but I can't keep my walls up anymore.  Tears slowly seep out and run down my cheeks.  Roughly I brush it away.  It's hard to be strong when I feel defenseless, helpless, restricted... I'm bound to a place where free-will doesn't exist; the hospital is my prison and I am a slave in shackles.  

I silently scream, but nothing happens.  I'm miserable.  I'm so lost.  I'm broken inside.

God, why are you keeping me here?  I'm not getting any medical treatment.  I'm exposed to more people and more bacteria while stuck in this hospital.  I'm a bug under the microscope. I'm an interesting specimen everybody is observing with no clue what my body is doing! Lord, I'm tired.  I'm sick of being locked up.  Argh!  Why can't I just go home?

Deep breath in.  Slow breath out.  

Father God, forgive me, Lord, for arguing when I said I wouldn't.  Forgive me for making a fuss that only makes everyone feel bad and gets me nowhere.  Lord, give me the heart to accept the entirety of my hospital stay with an attitude that pleases you.  Give me peace and the complete acceptance to trust that your plan is better than mine.  Give me the heart to acknowledge that your timing is sovereign.  Help me to let go of my fight for control.

Lord, as you will it, I will obey and stay in this hospital with gladness and a true smile because I am choosing to serve you first over my own wants.  Lord, you know my desires.  I will continue to trust that you have the best in store for me.  Change my heart.  Change my attitude.  Change me to truly shine with your goodness.  Remove my fake mask, Lord, and give me a spirit that matches yours.

In Jesus' name I thank you for healing my heart, mending my mind, and giving me the strength to walk as you dictate.  Amen. 

Click.  I watch as my main attending doctor walks into my room.  Because of all my pushing to go home earlier, I feel pretty guilty for giving the intern doctor a hard time.  I'm not going to repeat the same mistake twice so I immediately call out, "I'll stay.  Anything you ask of me, I will be good and listen."  

"I will let you go home if you promise to follow a couple guidelines." 

Yes!  I'll do anything to go home!  Nodding my head enthusiastically, I agree.

Wow, God is amazing when and how he chooses to act!  No arguing.  No pleading.  No fighting.  None of my demands.  Just as God changed my heart and my attitude, I believe he changed the attending doctor's decision.  Yay!!!  I didn't meet any of the hospital criteria for going home so all I can say is that God is definitely working behind the scenes.

Praise the Lord! 

Much Needed Break

I know that you are my advocate.  I know you have a plan.  I know there's a purpose in me being admitted at Stanford Hospital... but Lord, I can't see what you're doing!  I know you give me glimpses.  I know you can give me rest... so Lord, give me a break please?

Take a deep breath.  Another.

Just as I'm trying to pull myself together, the nurse comes in.  Pasting a bright smile on my face, I ask, "What's up?"

"You're current pack of antibiotic is done.  I'll give you an hour break from being hooked up as I order the next packet.  It's 9:10 right now.  You have until 10.  Here's my phone's number, call me if you feel dizzy or anything happens.  I have your cell in case I need you. Enjoy!"

Yes!

Stepping outside my door, I peer right.  Nope, not a good idea.  I see doctors.  Left it is! Long hurried strides carry me quickly out of the unit.  Two more lefts and I arrive at a glass door.  Peering through, I see trees, patio furniture, and stairways down.  *drool*  Now this I like!

Scrambling outside, I stride up and down the stairs four times each way for exercise.  Done. Now if only I can find a spot to relax.

Scanning the area around me, I zone in on a small niche with just the right amount of dappled sunlight and shade.  Taking a seat, I immediately prop my legs up.  Glancing around, no one's down here.  Good.  Furtively, I take my mask off.  *wide grin*  Taking deep breaths, I let my shoulders relax.  Rolling my head back, I enjoy my surroundings.  A gentle breeze.  Sunlight sparkles off of delicate spider webs swaying to invisible air currents.  Ants march purposefully at their given tasks.  Leaves reach and sway towards the sun.  Tiny purple flowers blossom, half-hidden by larger shrubs. Vines cling to an old wooden fence.  A pair of doves stroll along brick cobbled floors.

A bit of freedom. A little peace.  Calm in my heart.  Time to resettle my soul.

Thank you God for this time to rest in your presence.  I'm supposed to go back inside now; be tied up again.  I'm dragging my feet a bit... but I feel a little more refreshed.  Thank you.  I don't know what you have planned, but I know you are my advocate and my sovereign.  For now, thank you that I can smile again.  Thank you that I can speak without a sharp edge. 

Resistance

Thursday, July 16, 2015

I don't feel well.  I'm sleeping all day, can barely keep my eyes open, and don't feel good when I move.  Did I just overuse my energy reserves from cooking with my sister yesterday? That doesn't seem right.  Physically tired from doing an activity is different than this heavy sensation dragging on all my limbs and this constant mental fog.

Crawling onto the couch, I roll onto my back.  Lifting my head, I shift my pillow into a more comfortable position.  Blanket in place, my mind phases in and out.  I blink my eyes when I hear the garage rumble open; Noel's home.

I should get up.  I need to move.  Nothing happens.  It feels really really hot in here. Hearing Noel step into the house, "Hub-chan, I feel really hot."

Noel reaches out his right hand to touch my forehead.  So nice and cool my body wants to just melt into that one point of contact... but then it disappears.  More?  That felt really good. I want to tell Noel to keep his hand on my forehead, maybe even on my cheeks.  Oh, that'd feel great!

"You're burning up."

A cool thermometer slides past my lips then under my tongue.  I keep my eyes closed; resting.  No energy to grumble or argue.  Silently I wait.  *beep*  Noel pulls the thermometer out, "103.8... that's really high.  Here's some Tylenol." 

Hours pass.  I wake up feeling really hot again.  Ah, my temperature is back up at 103.3. More Tylenol.  I struggle knowing that I should go to the hospital in case I have another infection.  I hate hospitals.  If I go in, I know that they'll keep me even when I'm better to "monitor me for my safety."  Bleh, safety.  More like I'm an interesting science experiment, a super complex case with unique reactions, a bug under the microscope.  The very thought of being in a hospital sends shivers down my spine.  I don't want to go.  No, I'm not going. Fine, fine God, if my fever escalates back into the 103 range, I'll go.  

It's 1:10pm, my temp is rising.  I know it's high, I can feel it.  The thermometer temp continues to creep upwards.  103.5.  Fine, God, I get it, I'm going!

Lord, I automatically resist whenever it comes to having to go through the emergency room... every time, you open my eyes to see you at work.  I don't enjoy this process.  I have a great fear of accidental exposure to my allergens and the severe side effects.  Yet, Lord, there is nothing out of your control.  Nothing can happen out of your will.  I know that.  I believe it.  I still don't want to go!  You can just heal me right?  What is it that you want from me?

Lord, soften my heart to follow you.  Soften my spirit to trust you again and again.  Open my eyes and ears to see and hear you that I may take joy in where you place me, the people I meet, the things I have to experience.  I dislike being a guinea pig, but God, may your will and not mine be done.

For your Kingdom, to your will, for your purpose... match my heart to yours so that I can properly let you shine.

In Jesus' name I pray, amen.