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: