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:

Much Needed Break

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

Take a deep breath.  Another.

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

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

Yes!

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

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

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

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

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

Now

Ahhhhh... I want to punch something. 

Frustration.  Irritation.  Inside, I feel a welling of emotions; twisting, tangling, knotting.  My stomach churns.  A lump sits in my throat.  Fighting to suppress the rising bile, I decide to take action and sit up.

Tossing pillows over my head, I create a soft sloppy backrest. Wriggling upright, I puff out a breath of air.  Gross.  My mouth is coated in cotton fuzz.  Taking a sip of water, I derive no pleasure from the stagnant blandness.  My tongue is slightly numb and my tastebuds are ineffective at sensing any sweetness.  Everything I eat tastes like it's gone partially bad. Then again, eating just makes me feel worse.

Never mind, I'll deal with eating when I next need to.  Later is better.  

Stupid chemo treatments.

My body shivers as chills run through my limbs. Probably a random low-grade fever.  I get these all throughout the course of a day.  Not an issue.  Ignore it.

Looking for something to do, I turn to focus on my heart.  It's still pounding.  Right hand on my jugular, I hold my index and third finger over the thumping of my pulse.  Twisting my left hand, I count the seconds drifting by on my watch and the pounding under my fingers. Done.  I withdraw my right hand, letting it drop to my side.  Great, my heart rate is 112 in resting.  Guess that's where my headache and fatigue come from huh?

Rubbing my hand together in annoyance, I hear the empty papery sounds of dry skin on skin.  Numb.  I can't feel my hands very well right now.  Supposedly, this is a temporary side effect (for me) of this chemotherapy treatment.  Reaching down, I gingerly touch my toes. That hurts.  My sensation's so messed up that each toe feels bruised.  

In disgust, I throw my arms out wide.  Unmoving, I let my mind wander.  Being physically present, acknowledging my deficiencies, dwelling on altered physical sensations is driving me crazy.  I've slept all day and can't sleep anymore... But I don't have the energy to release my feelings of pent up discomfort. 

Time to withdraw.  If I don't move... I can distance myself.  In a quiet corner of my mind, seal myself inside thick walls.  No one can disturb me here.  I don't feel anything here.  I can pull away from my body and rest.  Close the space smaller.  Tighter.  Deeper.  I can feel my eyes glaze as they drift closed.  The sensations of my body dull out.  Sounds dim.  Away from despair.  Away from things I have no control over.  Away from the troubles of this broken body.  

Peace.

Quiet.

Boredom.

Utterly bored, I crack open my walls.

"Hey, Jesus!  Wanna spend some time with me?"

In the darkness that is not dark, in a place that is formless but has walls, I exist.  I smile with the joy that I'm not alone.  My God walks with me.  He lives in me.  He provides for me.

I am satisfied.