Living for my Reward

Wednesday, August 26, 2015

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

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

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

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

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

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

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

Time passes.  

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

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

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

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

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

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

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

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

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

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

In Jesus' name I pray, amen.  

Thursday, August 27, 2015

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

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

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

Dealing with an Aggressive Cancer

Wednesday, August 12, 2015

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

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

Wednesday, August 19, 2015

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

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

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

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

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

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

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

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

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

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

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

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

Learning to Listen

Thursday, August 6, 2015

"I'm sorry."

"God forgives you."

"Will you forgive me?"

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

"But will you forgive me?"

Silence.  "Fine."

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

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

In Jesus' name I pray, amen. 

Sunday, August, 9, 2015

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

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

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

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

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

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

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

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

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

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

In Jesus' name I pray, amen.    

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

Feeling Useless

August 3, 2015

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

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

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

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

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

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

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

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

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

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

In Jesus' name I pray, amen. 

Me hanging out in my hyperbaric chamber: