After the Storm

Huddling tight on my side, I grasp my pillow hard.  Fingers dig into soft flesh; nails turn white.  Curled around a warm water bottle, blankets pushing me down, I gently rock back and forth.  Muscles rigid, trembling with tension.  Panting, gasping, short puffs of air pass in and out of my mouth.  I feel nauseous.  Waves of pain wash over me.  Breathe.  Just breathe.  God, help!  I can barely think; no coherent words come to mind... Help, God, please help me.

Barely sane, I want to cry, but no tears come forth.  I want to scream, but I don't want to wake Noel.  Biting my lips, I quietly twist and turn...  Something, anything, in an attempt to feel better...  To make time flow by faster.  Ride the waves,  go above my body's sensations.  Slowly, I pry my fingers away from my body.  Kristy, take a deep breath.  Fresh air.  Clean air.  Relax.  I command myself to soften tesnse muscles.  Calm.  I feel so cold.  The pain is gone.  Rest.  Prepare.  I anticipate a wave a pain in 8-10 minutes, 15 at the most... this seems to be the current pattern.

The knowledge of impending pain looms above my head.  My muscles still shake from fatigue.  I'm approaching my 5th hour of this silent battle... This cycle of pain and relief feels like a never-ending circle of torture.

I knew the risks.  I know the consequences.  I thought I was stronger, steadier.  I felt healthier.  I forgot the pain.  I forgot the physical battles.  I forgot the mental struggles.  I was normal again.  Well, I thought I was normal for this past week, but tonight is really hitting me hard, harder than usual.

*deep sigh*

What risk?  Exercise. 

Yesterday, I performed some light exercises.  15 minutes of aerobic side-steps, pumping my arms and swaying my hips.  After that short 15 minutes, my muscles felt fine, a little floppy, but not super fatigued.  My overall energy depleted, but I thought only for that one night.  Wrong again.  I forgot that refilling my energy reserves takes a long time... that my body is very inefficient.  Recovery takes a long time and I tend to expend my energy without calculating my reserves.

Have you ever exerted yourself so much that your muscles tremor and shake?  The resulting movements during that phase of fatigue are jerky and uncoordinated.  Well, that's me right now. 

I've learned through trial and error that all physical functions take energy.  Eating, digesting, breathing, sitting, standing... these daily acitivities do not even include running, lifting, cleaning or the thousand-and-one things I used to execute without consideration.  Now?  When I get too tired, my muscles spasm.  I have conscious control over my limbs, the muscles I use when I breath, how I position myself to maximize my energy recovery... but I cannot control the thumping of my heart, the automatic digestion after I eat... these organs require energy as well.

That jerky, uncoordinated muscle activity is occuring inside as my body attemtps to digest food: muscles clash and twist, over-contract, absorption becomes inefficent... my recovery of energy slows down even more.  I unintentionally create a  vicious cycle of energy depletion and pain with out-of-control internal muscle contractions.

Only ever when I'm physically tired do I hurt so much.  Sad huh?  Who ever would've thought that my physical limitations are so strict?  What kind of physical therapist can I be if I fatigue so quickly that 15 minutes of moderate activity takes 2 days to recover?  Then add in the recovery time for the pain and lack of sleep... 3 days?  Too long.

Father God, Lord Jesus, Holy Spirit... What am I supposed to do?  I plan to start work next Tuesday, but I feel so broken.  If it's just fatigue, no problem, I can easily push through.  However, this combination of fatigue and the follow-up hours of pain... Not so fun.  I don't have a clear scale to balance my energy in and outs.  I hate this physical sensation of pain and helplessness.

God, give me strength, wisdom and courage to keep trying.  I don't want to stay weak.  I don't want to avoid activities just because it may result in pain.  Father, I don't know what to do anymore.  I'm so tired.  Give me rest, comfort, warmth, peace.  It's now 6am in the morning... Can you please help me sleep?  No more pain please.  I don't want to struggle anymore.  Let me get away from this body... Just for a little bit, okay?

******************

Thank you, Lord for giving me 2 hours of sleep before having to pop out of bed.  Thank you for the warm rest, relaxed muscles and significant decrease in pain.  This discomfort that woke me up, it's normal, this is nothing I can't handle.  But Lord, thank you for being beside me and getting me through earlier!  I'm so happy the worst is over and my body can continue to settle back towards whatever normal I have.  Thank you for blessing me with this body that can stabilize!  I complain that I can't do much, but that's not true.  Lord, you really enable me to do a lot!  I can stand (if I don't exercise) without having my legs fold from under me.  I can sit 8 hours in a chair without drooping.  I can see muscle outlines again.  Overall, I feel more energetic than I have in a long long time.

Thank you, Lord Jesus for giving me a body that can still heal, that can still function, that I can enjoy life with.  Thank you for a clear CT scan and no more chemotherapy (for now).  Thank you for giving me a wonderfully supportive husband, loving family and true friends.  I give praise to my Father God in Heaven for so many blessings: for joy that isn't based on circumstance, for hope in the future through the loving sacrifice of my Lord Jesus Christ, for getting me through one storm at a time.

May you be blessed with peace of spirit and a joy-filled life. 

I can't wait to get back to work next week!!!  See you next week!  =D

Karen asked me to be one of her bridesmaids.  I'm honored!

Watching Over Me

“I can go ask.”

Huh?  Who said that?  No one’s immediately around me.  Scanning farther around me, my eyes fall on two people I’ve never met before.  Maybe they had a question?  Smiling at them, they smile back.  No other response.  I probably heard wrong.

Continuing onwards, I head towards a nearby bench to greet a bunch of boys, each busy playing on their handheld device.  Every step I take, I feel a tugging.  A tiny voice in my heart is saying “Go, talk to those two people.”  I don’t want to.  “Go talk to them.”  Don’t wanna!  Stubbornly, I walk past the two people I’ve never met.  They’re busy in a conversation with each other; anyways, why should I bother them? 

As I give each boy a hug, the tugging gets stronger.  “Go talk to them.”  Argh!  Glancing over my shoulder, the two people look fine.  They’re not looking around… in fact, they're busy eating lunch.  I don’t want to disturb them.

"Go."

Pause.  I finally stop.

Excuses and more excuses.  If God’s going to be so insistent on calling me over to talk to these people… why am I so stubbornly resisting?  Dang it, I hate being pulled out of my comfort zone.  I prefer to shy away from people I don’t know.  God, can’t you just call someone else to go?

A sense of comfort.  A reminder: I said if God calls, I’ll follow.  God can call anyone he wants, but he chose to call me for a reason.  This tugging sensation isn’t disappearing.  Stronger and stronger I feel the pull.

*deep sigh*  Who am I to say “no” to God?

Fine, God.  Yes, yes… you’re calling so I’ll go.  I don’t know what to say or what to do, but you gotta lead this conversation okay?  You be in control because beyond saying “Hi,” I have nothing else.  Father God, you know I hate starting conversations.  I’m scared.  I don’t have the words.  I hate interrupting… so you better lead! 

Deep breath in and slowly out.

Lord Jesus, give me the heart to love these people as you love them.  I follow you in your footsteps.  Lord, you talked to tons of people, got placed in situations where you were not appreciated.  Here at church, this is my home turf.  I’m safe.  Give me your comfort, your peace, your courage as I intentionally approach these two people.  I don’t know them, but you do.  Open my eyes and my ears to hear what these people really have to say.  If they really do need help, give me wisdom to help at the root of the issue… to not just hear their words, but to hear their heart.  If this is your will, help me bring them your love.

A couple of steps.  I’m already here.  Standing with the sun shining, my shadow falls across the table.  Looking up, the two people stare at me.  Pasting a smile on my face, gentling the thumping of my heart, I gaze first into the lady’s eyes and then into the man’s.  “Hi, my name is Kristy.  Are you new here?”

The tugging finally stops.  I am where God wants me; right here, right now, participating in this conversation.  Relief.  Gentleness.  A soothing sense of comfort.

“Ah, so you were jumping around and dancing so much last night that your knee hurts to walk.  That really sucks that you have to walk long distances to get food from local churches and shelters.  Can I take a look at your knee?  Mind if I touch?  You’ve got a little bit of swelling here… do you mind if I try a taping method that may help relieve some pain?  It may not stick well because you have some hair here.  If the taping works, great!  If it doesn’t… *shrug* At least we tried it right?  Here, let me grab you some ice from the kitchen.  That feels so much better huh?  Make sure you take small steps with lots of rest BEFORE your knee starts complaining; otherwise, the swelling will build up fast and you’ll be in more pain.”

God, you are really amazing.  Even as I struggle against obeying you, you patiently and insistently call.  You didn’t give up on me.  You love me and you know me: my wants, my needs, my desires.  You also love this married couple enough to bring us together so that all three of us are blessed.  The man’s leg was hurting, his wife was worried… they didn’t know what to do or where to turn.  If I didn’t listen to you, I could so easily pass by on your gift: the provision of this meeting, the joy in serving, the laughter in conversation, the deep peace of being loved by you, the comfort of healing.

Father, your timing is impeccable.  Looking back, I can see exactly how you orchestrated this meeting, laid out all the tools… when you lead, amazing things happen.  Thank you that you didn’t let me pass on this opportunity.  Thank you for pushing at me so much that I couldn’t ignore your calling.  Thank you for providing this situation where I can actively use my knowledge to help.  Thank you for this chance to bring peace, healing and joy to others and to myself.

Lord Jesus, thank you for being my role model.  Thank you that you served me first.  You know exactly what it’s like to step out of your comfort zone.  Lord, you love people so much you placed yourself out there where you got ridiculed, suffered hardships, got betrayed… I’ve not even experienced a fraction of what you’ve gone through.  Who am I to complain?  To say “no” when you call?

Give me a heart to obey, to emulate Jesus, to listen to your calling without digging in my feet.  Lord, I want your blessings… so soften my heart to see your provisions, to follow your guidance, to not be so stubborn in protecting myself and my own selfish comforts.  Lord, you’ve got a greater plan in mind and I want to see you in action.  I want to be a part of your story… but a huge part of me is scared.  I continually resist when you call.  Thank you for being patient with me, for not giving up on me.  Keep teaching me.  Keep calling me.  Keep growing me.

In Jesus’ name, I ask for more blessings, more stories to tell, more love for others in my heart.  Amen.

I'm starting to get lazy and my blogs are coming out later and later.  Please pray for these things:

1.  Time and focus to write me blog and not delay... as well as situations, thoughts and experiences to write about.

2.  Plan to go back to work on April 1st... my body still acts up (not as bad as before), so please pray for strength, stability and that I can wake up early enough to get to work before 7:30am!

3.  I may be getting a cold, got a stuffy nose... please pray that I get all better quick.  There's still lots of stuff I want to do!

4.  I intend to exercise and get stronger, I haven't yet... please pray for motivation, time and focus.

Thanks for reading and all your support!  *super big hug*

Playing with my goddaughter, Maddie:

New Information

“Here, this is for you.”

“What is it?  The packet’s really thick!  Oh… something from Stanford.  Hmmmm, no one told me to expect any packages from them.”  *shrug*

Tearing the bulky envelope open, I pull out a thick sheaf of papers.  Huh?  My name.  At least I know this information is for me.  Flip.  Flip.  Quick scan.  What?  Huge amount of hard-core medical terminology… something about a gene and clinical trial?  Okay.  Back up.  Front page.  What does it really say?

Date of Collection: 01 August 2013 (my most recent abdominal surgery date)

Specimen Site: Liver

Specimen Received: 22 January 2014 (probably sent for sampling after stopping chemotherapy)

Report Date: 24 February 2014 (about when I found out I may trial another type of chemotherapy)

Genomic Alternation Identified: PTCH1 loss exons 1-2 (gene sequence missing a segment which means that something in my cells isn't being properly regulated, possibly leading to the cancerous growths)

Therapy Associated with Potential Clinical Benefit: Vismodegib, FDA approved for use in basal cell carcinoma

Clinical Trials: 2

Taking some time to assimilate the information, I finally understand.  This packet of papers state that there is a known genetic alteration in the given sample of my tumor.  Furthermore, there is a chemotherapy medication with the potential to affect cells with this particular altered gene.  The medication’s goal would be to inhibit the mutated genetic pathway, potentially causing a slow down or even stopping my abnormal cancerous growths... maybe even with the potential to halt all my tumor formations.  Yay!

So, putting all the information together, if my scans ever come out positive for more tumors, I will likely be placed into one of these two available clinical trials.  At the same time, even though these trials are phase I, meaning just starting the testing phase for my type of cancer, the medication is already commonly in use for another type of cancer.  Hurray!  The side effects are already known.  The dosage already has an acceptable range of effectiveness (even though it’s for another type of cancer).  This option isn’t horrible.  In fact, even though this chemotherapy drug isn’t guaranteed to work… It’s definitely a better chance!

Lord God, thank you that my doctor sent a tumor sample in for genetic testing.  Thank you for guiding the testing process so that my doctors and I have a better grasp of what may be wrong.  Thank you for a potential course of action if or when my cancer becomes visible.

Lord, thank you also that through blood sampling, I now know that my vitamin B2 levels are low.  Since I started taking vitamin B2 supplements these last two days, my body has re-stabilized!  Hurray!

Little bit by little bit, I feel that I’m getting a better grasp at controlling my body… it’s actions and it’s reactions.  Father God, I lift your name in praise for enabling me to work with my doctors to figure out the new complexities of my body.  Whenever I feel hopeless or stuck, Father, you open new doors, provide more information, offer new approaches to my care.

Lord, I can’t wait to get better, go back to work and have lots of energy to enjoy the beautiful outside weather!  I offer up my praise, my heart-felt gratitude at your mercy.  Thank you, Lord God, for your consistent character, demonstration of love towards me and your power through impeccable timing.

Because of Jesus, I can pray directly to my Father in Heaven. Thank you for making me who and what I am. Amen.

Honor & Respect

“Hey, Kristy, can I talk to you for a sec?”

My eyes open just a little wider.  Uh oh, I see a very serious look.  This conversation isn’t going to be an easy one is it?  Drawing a quiet and slow breath, I attempt to prepare myself.  My shoulders are tense.  Relax, this isn’t a fight.  I know when a topic is not to my liking, my automatic response is a defensive attitude.  When my guard goes up, I can’t hear what’s really being said.  My self-protection mechanism really doesn’t get me anywhere.  If I don’t consciously lower my internal walls, I’ll waste this opportunity.  *sigh*  Opportunity for what?  I don’t know.  I hate difficult conversations.  I’m scared of the unknown elements and landmines.  Can I run?  How about I hide in a corner and never move?  Did I do something horrible?  Did I offend?  Did I say something bad?

Deep breath in.  Slow breath out.  Kristy… chill out.  I can’t guess what I don’t know.  I can’t fix anything or avoid repeating the same whatever it is if I don’t listen!

This person has the guts to talk to me straight.  I really admire their courage.  It takes a lot to face someone regarding anything potentially unpleasant.  The easy route: avoidance.  Unfortunately, avoiding a situation or issue builds negativity and breeds additional problems.  With an internal toss of my head, I make my decision.  “Sure. What’s up?”

“There’s this issue…”  Imagine loud background noise.  You can’t hear.  And no, you can’t read my lips.  Only me, and the person talking to me, can hear this conversation.  *wink*  Not everything goes public.

Conversation ends.

Inside, I’m screaming “That’s not fair!  That wasn’t my intention!” 

For a moment, just a split second, my mind is overcome by this bubbling, churning, mass of darkness.  I want to lash out.  I want to fight back.  I want to justify my position.  I want to clarify my actions!

Rational thoughts and irrational emotions swirl, twisting inside.  Churning.  Knots forming tighter and tighter, ready to snap.  Suffocating blackness.  Struggling against chains.  Fighting within myself.  Sinking deeper.  Loosing reason.

Wait!  This person is acting as a mediator.  I’m hearing someone else’s point of view.  Life isn’t fair.  Community, people… everyone has their own option, their personal points of view.  We all step on toes, even unintentionally.  To live and work together, it can’t be all about me or what I believe is okay.

Arghhhhh… I know I should respect others, even if I don’t agree with their stance.  I know that even if I don’t feel like I did anything wrong, there’s something I did that’s perceived as wrong in another’s eyes.

Respect.

Honor.

How in the world am I supposed to act?  As a child of God and follower of Christ, what am I to do?  If I truly want to follow in Jesus’ footsteps and do the hard things that following Jesus as my Lord requires... my heart needs to change.  My goal should be to adjust my actions and words so that I don't cause another person to stumble in their journey or their outlook in following the same Jesus (1 Corinthians 8:10-13).  But by myself, with my own strength… I can’t do this.  I can’t do what I know Jesus would do.  To humble myself… I don’t want to bend.  My heart is to do my best to serve my God.  Being told that my actions are contrary to my service of the same God... that hurts.

Ah… Father God, right now, I don’t feel very humble or loving.  In fact, my hackles are up and I want to fight back screaming “unfair!”  Yet, reading 1 Corinthians chapters 8 and 9 in the Bible, you speak through Paul about actions; if my actions cause another to stumble, then don’t do it.  Lord, I don’t want to be a person who’s actions or words cause another to fall away from you.  Lord, you know my heart.  You know my intentions.  You know the reasons behind my actions.

Father, I’m trying my best to walk as Jesus did… I know I frequently fail, but because I love you most… what you call me to do, I will.  All my “rights,” what I am entitled to, even my pride… Father, I give everything into your hands.  May my life not be my own, but yours.  Father, use me as you will.  Guide me so I don’t become a stumbling block to others in their walk with you or as they come to know you.  May my actions, my words, my heart be a reflection of your Spirit and not mine.  Be my light, my peace, my heart.

Father God, I give you full control… control of my rights, my intentions, my actions.  Until you give me permission otherwise, I will not repeat the action that will cause this specific offense.  Help me to respect this person who also only intends to give you honor.  Give me the strength and courage and wisdom to honor and serve you, my God, above myself.  May my actions and heart be all-in and not of two minds.  May my words of living for you not be empty fluff.

Lord, I trust you to change and heal my heart.  I trust in your power to mediate this situation/issue.

Through the example of Jesus Christ, may my life please you, my Lord God… to you and for you alone will I bend.  Regardless of right or wrong, just or unjust… may my life glorify you first above all else.  In Jesus’ name, I ask that my choice of actions and my heart will bring you, my God, glory and honor.  Amen.