Welcome to Kristy's blog

Hi, it's Noel, Kristy's husband.  I want to welcome you to her blog, as you may or may not know, Kristy was called to Heaven on April 28, 2016. I will be maintaining her blog and keeping it up for people to read and hopefully be encouraged by her faith through her journey.  Thank you for visiting, reading and for supporting her vision of reaching all the continents of the world! 

Here's a throwback pic of us working on my Celica!

Welcome home!

Thursday, April 28, 2016

"Wake up, Noel, she's having a hard time breathing!" said Ate Nora as she repeatedly knocked on the door to the cat's room.  

Opening my eyes, I force myself up and head over to the master bedroom.  Kristy was gasping for air and all I could do was hold her hand and talk to her, telling her that I'm there and that I love her lots.  Her hand felt colder than normal and she didn't respond much to anything I said.  All I could think of doing was to pray silently for her as it was only me, Chris, Ate Nora and the hospice nurse.  

"God please help Kristy!!!"

Calls and text messages went out, is this time for her to go home?  A couple of hours later, her family started to trickle in.  We took turns holding her hands, talking to her, and massaging her feet.  We even Skyped with her brother in China, so that he could be "there" with all of us.  

Around 9:30am, the Lord took her home to be with Him.  She did not struggle or suffer, she was very relaxed and seemed like she was resting in bed.  Thank you God for not letting her suffer any more!  

God, you have blessed me with an awesome wife and many great memories with her!  I thank You for bringing us together, for the love we shared and for her great example of faithfulness.  I know that You have placed us where You wanted each of us: Kristy to fight the good fight and me to support and love her all the way through the fight. Thank you God!

Thank you everyone for supporting us throughout the years, for visiting and reading her blog!  She was blown away by how many views she got and the number of people she moved with her writing.  

Here is one of her favorite pictures of us we took while on vacation on Kauai, enjoy!

Unending Despair

Saturday, April 16, 2016

Watery fecal matter pours from my body.  Ate Nora spends all night cleaning me. Right after I'm clean, my body pours acidic fecal matter like water!  When will this stop?  One day? Two? Cycle after cycle with no reprieve.  I don't even need to eat or drink and my body dumps liquid acid!  Where's all this gunk come from?

Over and over, everyone, especially Ate Nora coxes me to eat and drink.  I bite myself firmly, groan, and scream in frustration... but I dare not harm myself.  I don't think anyone really understands.  I need the external stimuli to stay sane.  Strategically hitting myself, using cold packs, and squirming keep me grounded in the here and now let's me know I'm here even without control of this body.  

Friday , April 21, 2016

I haven't slept in over 24-hours... Well, dozing off for half an hour doesn't really count does it?  I scream to God for help with the repetitive and unending pain.  I attempt to watch Netflix to distract myself.  The blow dryer keeps me warm or creates a different sensation.  Continuously, acidic fecal matter seeps and I squirm in pain.  Getting cleaned, I feel myself flinch and cry, beg and moan.  I dislike myself.  So much for high pain tolerance... I'm all worn out and have none left.  

Father God, I'm so very tired!  There's talk of placing a fecal tube up my butt.  Even though warned of the is comfort, I find that I want it... even if with my crazy water fecal incontinence, the tube May last only a day... there would be some relief from the acidic sensation that rolls through.  In the end, the idea got nixed and I find myself very disappointed.  However, Father, I know that whatever is happening, I may not know why... But nothing is out of your control. 

Sunday, April 24, 2016

I'm now on intensive hospice care and got a nice lecture regarding the fact that I'm going to die anyways.  The lady tells me, "Don't struggle so much, you do know that you're on hospice and will die soon.  Accept it and just take pain meds."

I nod my head... She ddb't care about what I had t say... she just wanted me out of my blatant misery. 

Lord God, I will trust in your provision.  I may not understand why things are happening the way they are, but into your care I g e my life.

In Jesus' name I pray, amen. 

Eating well... My Dad and I with large living sea urchin we're getting ready to eat:

Ate Ńora and î playing around at night:

Caregiver

Thursday, March 31 , 2016

"Sorry.  We cannot accommodate your needs.  You require intensive care which will cost more."

"How about just one more night.  Please!

"That will be $40 an hour at night."

"We can't afford that on our budget!"

"Our company will pro-rate our services and return the unused portion.  Thank you for your time."

Ahhhhh.... God what do we do?  My body is acting up with super wet fecal incontinence less than every 5 minutes! You touch me and my body pours out gross wetness.  Pain.  Acid stinging.  My anus is raw from being wiped.  My body spasms with constant discomfort. Why Lord!  Help!  I need you!  I need someone to turn me when I can't move!  I got labeled too high maintenance... What am I supposed to do?  This is not the body I choose, but you gave it to me.... now please provide in how to live in it!  My family is amazing catering to me literally day and night on a rotation of two ppl at all times, but they are all burnt out and tired.  Each has their own life as well and Noel starts work next week!  In Jesus' name I beg for help, amen!

Half hour later while wallowing in despair, a phone call comes through for Noel.  "Noel, I kept an eye out for someone who I believe may meet your needs for a caregigiver at night. She is really good."

"When can we meet her?"

"I can bring her in half-an-hour.  That okay?"

Instant click.  Ate Nora is tall, capable, hard-working, compassionate.  Thank you, God!  "Can she start tonight?"

"She is willing to start tomorrow night."

Can't force anything.  "Okay. See you tomorrow.  Thank you!"

That night, my body poured fecal matter every 3-5 minutes the entire night!  My brother, Chris, and family friend, Josh, spent the entire night stuffing paper towels to catch the copious fecal material literally pouring out my body.  So gross!  Where I'd all this come from?  I don't even eat or drink this much!  I cry and groan to no avail.  My incontinence does't stop until the next midday.  I'm so happy Ate Nora didn't start last night!  This body is enough to scare anyone off!  Me included!

For a couple days, Ate Nora, my nighttime caregiver cleans me.  She carried me to the toilet.  Pets my hair when I groan in pain. Reassures me everything is okay.  Stays up with me the entire night cleaning.  Hugging me.  Comforting me.  She constantly massages my numb legs without me begging.  She makes me laugh my putting a smiley cold compress on my forehead. She stretches and encourages exercise.  She kisses me gently when I want to cry.  Most important, she prays for me!  Th joy she exudes is special.  I stink.  I poop all the time.  And yet, she still speaks to me patiently with a beautiful smile all night without sleep.

As soon as I eat or move, I poop.  Ate Nora keeps saying, "don't worry, I'll clean you up."  No guilt. No pressure.  Lots of acceptance.  Frequently, I require cleaning again and again and again within seconds of already being cleaned!  So embarrassing!

Thank you, Lord Jesus, for providing a beautiful person willing to be by my side.  She shows me a piece of your unconditional love.  Now that Noel is going to start work, you've provide an angel to take care of me on a live-in basis so that my family and friends don't burn out anymore. Thank you, Jesus, for your amazing timing and constant provision whether I cry in distress or whimper in pain, stink, or squirm with itchiness.  I can't move.  I don't know why you woke me up so boney, helpless, weak... but you did.  I still live to serve you, Jesus.  Heal me!  I may be only 80 pounds of skin and bones, but you created me.  Give me purpose!

In Jesus' name I beg, amen.

Ate Nora making me smile:

Toileting

Burning.  It hurts.  Hurt so much!  What's going on?  My vision is blurred.  I can't see!  Everything I try to look at is a smear of color and soft light. Groaning.  Moaning.  Confused.  Panting.  Being cradled.  Sitting on the toilet.  Right?  Left?  Falling?  I feel gentle hands cradle me.  Who?  Lost.  Lost.  Head leaning on someone's belly as try to catch my breath. Help!  Help!  I can't breath... so tired!  Hurry.  Hurry.  Painful.  Palpitations.  So dizzy!

I remember Karen's words, "God wants us to ask for healing.  He wants us to ask for those desires of our hearts and I think he wants to give us good things he wants to heal."

I need to pray!

Father God please help!  Help me breathe.  Help me focus.  Give me peace.  Take away the pain.  Give me strength.  In you I can do all things!  Get me beyond the dizziness.  Help me make it through this ordeal.  Steady me.  

Strong arms wrapped around me,  Cradled gently, my body is held upright as my bottom is washed by running warm water in gloved hands.  Soft pats dry, clean and rub my butt.  Eyes half-open, I'm instructed to hold on tight.  Lifted up from the toilet, my arms lock tighter around my husband's neck as his hands scoop underneath my thighs.  Butt swinging in the the open air, another pair of hands pull on diapers.  Sitting efficiently in the walker seat, feet dragging on the ground, my younger brother, Chris, zips me to bed.  Once I lay in bed again, my body relaxes.  My whole body hurts.  I'm so sore from not being able to move!  My legs have no strength.  My arms are scrawny bones.  But praise God I live!

Picture of me in bed with Chris:

Wavering

Tuesday, January 26, 2016

"I hurt."

I hear the breathy whine in my voice.  *shudder*  Is this the direction I want to go?  Just because I'm uncomfortable, I'm not weak.  I can't let myself spiral into needy despair.  I can't let myself feel hopeless or helpless else I'll find myself in a pit I can't climb out of.  I need to readjust my attitude again.  

Kristy, speak firmly.  Don't groan.  Maintain a "can do" attitude.  Take every opportunity to add in a mini workout.  Don't give up!  Stand straight.  Look up and not down.  Don't dwell on the now, focus instead on where I want this body to be able to accomplish.  Set realistic goals and go for it!  God, help me refresh and renew my mind.  I don't want to get stuck in the mentality that my body is breaking down and nothing I do is useful.  Give me reason and the will to fight.  Give me the heart to face my fears and see the potential past my nightmares.  Give me peace.  Point my heart always to you.  Give me the patience to endure.  Give me the confidence to keep moving.  Give me the strength to not give up.

In Jesus' name I pray, amen. 

Thursday, January 28, 2016

Pain.  Discomfort.  Pain.  Twisting muscle spasms.  Edema.  Numbness.  Ache.  Muscle weakness.  Pain.  No, no, can't label everything as pain... If I do, I'll fall into a pit of despair.  I'm scared.  These past 3 to 4 days, my body is retaining at least a pound of water.  I now carry about 20 pounds of excess fluid in my body.  I don't know what's going on.  I can't stop the fluid retention.  My abdomen is so distended it's hard to move, sometimes hard to breath.  I can only nibble at food now; if I eat too much, I throw up.  My legs are like water balloons, the limb is so puffy the skin is almost translucent in the sun.

How much longer do I have?  If this fluid retention continues, I'll not be able to walk or eat anymore.  I'm seriously reconsidering hospice... getting out of the house for appointments becomes more and more difficult.  I want to hide.  I don't feel good.  I don't want people to see me rock in pain or cry helpless tears.  Where did all my determination go?  *poof*  All talk, no substance.  I'm tired.  Can I give up now?  No, even if I choose hospice, I can't see myself laying in bed, letting my body drift out of control and happily drowning in pain medicine.  So tempting.  I hurt.  Is my work done yet?  I will continue to fight against my body's lack of control by staying in control to the best of my abilities.  This is the only way I can think of to honor Jesus with what I have left of me.  There's not much left.  So broken.  Hurting.  Disappointed in myself.  Scared.  

God, help.  I'm lost.  I hurt.  I want to rest now.  Can I leave this world yet?  When is okay?  How much longer?  I no longer hold onto my sanity.  I can barely think, much less process information.  Only in your presence can I find peace and relief.  Keep me under your wings, O Lord.  I have nothing left except you.

Friday, January 29, 2016

I'm at the infusion center for my 3rd weekly infusion of iron and second shot of Procrit and vitamin B12.  Perfect opportunity to ask for a trial of increase lasix in an attempt to rid myself of the excess liquid stored in my body.  I give the nurse my request who then asks the nurse practitioner in charge.  Turns out my hematologist was sitting right next to her during the call.  

"No increase in lasix.  The tumors are blocking the body from being able to void the fluid.  The patient will just get dehydrated."

Grrrrr.... there's so much I want to say!  One, there's no test or solid confirmation that my tumors completely negate my ability to void excess fluid (after all, the 20mg dose I receive in the infusion center helps me urinate).  I've also got arguable points two, three, four... but my hematologist won't listen!  Argh!  I am so frustrated!!!  To prevent dehydration, I can just drink more liquid.  I'm already in the infusion center where they monitor my blood pressure and symptoms... isn't this the best time to trial any changes in medication dosages?  Or how about actually testing my body to see where any possible blockages are before making a decision!

Blowing puffs of air past my lips, I struggle to quell my annoyance.  Inside, I'm boiling with anger.  What's the harm in a slight dosage increase?  Okay, okay... I'm totally spoiled.  Kristy, take a deep breath.  Another.  I'm very blessed that all my other medical providers take the time to listen to what I have to say and actually work hand-in-hand with me regarding my care.  I could push the trial of IV lasix through other avenues.  I'm tempted.  I now have about 21 pounds of weight in my abdomen and legs from just fluid retention.  My body is increasing the water it holds by about 1 pound every day or two.  I'm scared.  I'm willing to try anything to make this extra water go away... or at least stop the escalation of weight!  I'm desperate!

Kristy, stop!  

Before asking my hematologist for the increase in lasix, Lord, I first asked you for guidance.  I said that whatever decision the doctor made, I trust you to be the one guiding the entire process of my medical care.  *deep sigh*  I will continue to trust you.  Instead of pushing my own agenda, God, I know your timing is always the best.  I don't understand why I can't get the trial of IV lasix now, but if/when the time is right, I know you will provide.  Father God, your timing, not mine.  Help me submit to your guidance.  I've seen you come through in situation after situation... if you want something accomplished, it will be.  I'm not giving up a potential trial of IV lasix, but at the same time, I acknowledge that you are all powerful and that I can trust in your goodness.  The very fact that I am still able to walk, eat, and enjoy time with all my family and friends is a miracle in itself!  

So Lord, as sovereign God in my life, I lean completely on you.  What happens in the future, I leave in your capable hands.  Thank you that I can still move.  Thank you that the pain from the abdomen being stretched so quickly from fluid retention is manageable.  My peace comes from the knowledge that you can do anything you want when you want.  My faith, hope, joy rest in you.  Whatever happens, I acknowledge that you are in complete control.  Lord, into your hands, your timing... I give my body and all its ailments into your care.

In Jesus' name I pray, amen. 

Me and Noel in my cool massage chair =)

Swelling

Monday, January 11, 2016

Violently I rock myself back and forth, right and left.  I ache.  I ache.  My legs hurt.  My abdomen spasms.  Frantically I grope for my fentanyl lollipop and jab it in my mouth.  God help!  I hurt.  I hurt so much.  When will this stop?  I pant for air, forgetting to control my breathing.  Mindlessly I wiggle on the bed, seeking relief.  Anything.  Help me!

Bit by bit, my breathing slows.  My movements ease.  The medicine is working.  I unclench my jaw.  My muscles relax.  Thank you, Jesus, for medicine that works!  A ripple spasms across my midsection.  Not as bad.  I can deal with this level of discomfort.  Noel passes me the hot water bottle now that it's warm; I immediately shove it under my hips.  If I can increase circulation to the nerves in my legs, I can minimize some of the deep-seated ache down my leg and hopefully ease some of the numbness in my feet.  

My days revolve around cycles of pain and edema management.  Thigh high compression stockings, elevation, massage... all in an attempt to keep the excess fluid moving.  The fluid isn't being expelled, my body is retaining fluid and my weight continues to rise.  The liquid is pushed from my legs into my abdomen which then causes more spasming and pain.  I remove the compression on my legs, immediately, my legs start to puff up, but the discomfort in my abdomen is less.  Why do I torture myself?  If I let the excess fluid sit in my tissue, circulation is diminished, skin quality will decrease, and the fluid will harden to the extent that it'll be very difficult to remove.  I face the discomfort daily, hourly, every minute I'm awake in an attempt to optimize this body God blesses me with.  I will do the unpleasant tasks so that when God provides the next step, I will be prepared.

So far, I've waited 2 months to get an iron infusion so that my body can have the building blocks necessary to produce red blood cells.  A part of me is irritated that the process is taking so long. However, God's timing is impeccable and this kind of delay is abnormal... so I trust God's hand in this process.  

Lord, you lead as you've always done.  Thank you.

Sunday, January 24, 2016

My abdomen is distended with fluid.  My legs are puffy marshmallows with the feet getting ever more numb.  God, how much more?  I know that my tumors are growing exponentially larger and fill my abdominal cavity.  I know that my limited physical abilities could be way worse.  Thank you, Lord, that I can still walk to the toilet on my own... But I'm tired of fighting!  Everyday is a battle to keep the pain from overcoming my mental walls.  With the help of Noel, family and friends, I am fortunate enough to have the assistance I need to massage my legs, apply compression stockings, and get me all my meals in bed. Still... Is there such a thing as giving up?  I think about letting go, but honestly, the rising pain and discomfort stop me from any true willingness to give in to my body.  So here I am... Clawing forward day by day.  Every hour, I dread the unknown.

Yet, in the midst of all my complaints... There is good news as well.  I'm getting infused with liquid iron and given an injection of vitamin B12 and Procrit to manage my anemia.  I also received two packs of blood, but I don't feel any stronger after the transfusion.  Really, God, I'm confused.  I have no idea where my life is going.  Am I going to get better or worse?  If worse, how much worse?  In reality, I just want to hide... To ignore the daily struggle, to not have to fend off discomfort at every turn, to rest.  Is that too much to ask for?

Later this night, I got stuck in the massage chair.  My back hurts so bad I can't move.  "Noel, help me please."  I hear the pitiful high-pitched whining in my voice.  In too much pain to cringe, I drag heavily on Noel for support.  Toddling to my side of the bed, I attempt to climb on and fail.  I can't get my leg up on the mattress!  Noel bends my left leg, folding it onto the high bed surface, places his hands under my butt and boosts me up.  Tears leak out as I struggle against the pain and contemplate my ever weakening body.  Noel holds me tight as my tears soak his shirt.

All the gadgets and medical knowledge I have only assist in barely managing my symptoms of pain, edema, and muscle weakness... just enough to keep my body from completely crashing, but barely.  

Father God, only when I turn to you and seek your presence can I find rest anymore.  No fancy equipment or medicines or techniques work to alleviate my pain and my growing weakness.  My body continues to retain fluid.  My legs grow ever more numb.  My muscles weaken.  God, there is no longer relief except when I bury myself in your presence.  I don't know what to do anymore.  Where are you leading me?  I want to give up... but you didn't create me to quit.  Every waking minute, I fight.  My body fails me more and more.  Lord, to you be all the glory.  My life is not mine but yours.  Even in my darkest hours, give me the strength to seek you first.

I don't know what else to pray for anymore.  To my God be all the honor and glory, forever and ever.  Amen.

Meeting my niece, Anabelle, for the first time:

My Life as it is

Thursday, December 31, 2016

It's 5:57am.  I just crawled into bed for the third time in the past hour from trips to the toilet.  Snuggling under warm sheets, a hot water pack on my stomach, I gaze outside the window.  I see one star, shinning like a single speck of glitter in the sky.  Starring hard, I see two stars, maybe even a third?

Laying on my left side, I grab a fentanyl lollipop and plug it in my mouth.  The cramps are getting worse and the warmth from the hot water pack is unable to soothe my growing discomfort.  Maybe I need to brave the cold and use the toilet again?  Grrrrrr...  I think the fentanyl is kicking in; my eyes are starting to droop.  Opening my mouth, I pull out the overly-sweet medication.  Bleh.  I like sweet stuff, but not at night when it coats my teeth in sugar.  Ugh.  Reaching over to my desk, the cold air instantly cools my right arm.  I grab the white plastic sleeve and slide the fentanyl lollipop into it's temporary storage.  Now, toilet or sleep?  My brain says I'd be smarter to use the toilet first... but the cold and my eyes drifting shut overrule logical thought. Warmth.  Rest.  Comfort.

Tuesday, January 5, 2016

"What do you want to eat?"

"Can you stir-fry the left-over rib eye and sauté it with the mushrooms, onion, a little homemade non-soy soy sauce and a bit of sugar?"

"Do you want the onions soft?"

"You don't have to.  Usually I just pick out the onions, don't like to eat them... but cook with them for the flavor."

I watch my husband, Noel, plod outside, closing the bedroom door behind him to retain the room's heat. It's cold downstairs... I mean bitingly cold.  Not only does Noel have to tolerate the cold, he also has to cook so I can have something to eat.  I can see him getting tired.  Tired of cooking.  Tired of massaging my legs to mobilize the excess fluid stuck in my lower extremities.  Tired of crawling into bed only to receive another request for food, drink, or physical assistance.  He's got to be tired of meeting my needs 24/7.  

Here I am, in bed.  I stumble from my bed to the restroom then back to bed.  If I step out into the cold hallway, my abdomen hurts and my legs ache.  When I sit in a chair, my stamina instantly drops and I get weak.  When I'm too weak, my pain levels elevate.  If I ingest too much fentanyl, my body retains even more water.  I feel helpless.  Noel runs around getting everything for me... and what do I do?  Nothing.

My heart weighs heavy in my chest.  Tears seep from my eyes.  Why am I so useless?  Lord, is this the life you want me to live?  I do nothing except watch Noel expend all his time serving me.  I know that our marriage is supposed to be a reflection of Jesus Christ and the church as his bride... but isn't this a little too much?  "For better or for worse, in sickness and in health..."  Lord, does Noel have to suffer with me to this extent?  I try to leave Noel alone to do his own thing, but when my body acts up and I need him... if I don't bug him, everything gets exponentially more painful.  I hate being so physically helpless!

Lord God, can you please just heal me or take me so I can rest?  I'm so weary.  How much longer?  Even if I cry or scream, nothing changes.  Everyday I fight to keep moving, to keep eating, to honor this life you've given me to live.  But how much more?  Being almost bound to my bed, only alert enough to share my story... what can I accomplish?  Physically locked in this body, trapped in my room by the cold and physical limitations... what am I here for?

Father God, my heart churns in distress.  My chest aches as I hold my breath in an attempt to stop the tears.  Heal me, Lord, from this physical prison.  Can I just stop doing whatever I'm doing?  Can I give up yet?  And yet, if I give up, I no longer honor you.  God, you are far greater than me.  Your plans are unfathomable to my mind.  You, who are all powerful... who are you to love me?  Help me?  Bless me with your favor?  However, even in the midst of my complaining, Lord, I know you love me as your child for the simple reason that you said so.  I know that what happens in this life is like a drop of water in the ocean.  I'm important enough that you sent Jesus Christ, Son of God, God himself born human and yet free of imperfection to live, die, and be resurrected so I can have a direct connection to you. I am dust, but you make me more.  Who am I to tell my Maker what to do with me?

Lord, here I am.  Continue to use me as you will.  Until you call me home to rest, I will struggle and fight so that others may see you in my life.  Thank you for the honor of walking in your presence.  Thank you for picking me up when I am down.  Thank you for loving me more than I love myself.  Into your hands, Father God, I once again rededicate my life to serve you above everything.  Give me the strength to use the gifts and talents you've blessed me with.  Give me patience and endurance to step forward minute by minute, hour by hour, day by day.  Give me the wisdom to utilize the resources you've provided so no one burns out.  Give me rest in your presence.

In Jesus' name I pray, amen. 

Playing with my Christmas present:

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: