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: