The "ONE YEARs" begin...

I remember the exact square on the sidewalk, the exact fencepost in front of my neighborhood elementary school where I was walking my beloved Daisie when the phone rang.  We had been waiting the news of whatever was going on with my Daddy's stomach.  Parasite?  Bum Gall Bladder? Ulcer?  Colitis?  All ideas from his doctor, who sent him away to see if things may improve after a couple weeks.  But they didn't and now he was in the hospital after countless scans and tests.  I stopped dead in my tracks when I heard "He has a mass on his pancreas Kylie.  Probably Pancreatic Cancer."  My knees buckled.  My whole world stopped turning.  The sky grew dark.  My arm shook as I tried to somehow hold onto the phone.  I don't remember what I said to my mom, I just remember the sobs.

I also don't recall the rest of the walk home, but I remember collapsing on the stairs in tears when I got back into the house.  Lee immediately met me at the door and knew what my tears meant.  When I told him the news I only remember saying through muffled sobs, "I'm not ready.  I'm just not ready. Lord Please.  Not yet.  I'm JUST.  NOT.  READY."  The rest of the night I lay in bed, crying until there were no more tears released.  I remember falling asleep and hoping I would wake up from a bad dream...the same way I'd feel for 4.5 more months.

And now, a year ago today, was the major surgery to remove the tumor.  I would later learn that only 15% of PC patients are "lucky" enough to even get to have the surgery.  Usually the cancer is too far gone and the surgery would be pointless.  But suddenly we were being told my Daddy would have to have it to even live a few more days, that a stent was not possible due to the mass being too large.  I would later learn that many have chemo and radiation to shrink the tumor first and even then don't know if the surgery would be an option, and still others would never make it to the surgery because they would succumb to the disease despite treatment.  Indeed, we were blessed.

I still don't understand why the "Whipple" surgery required a complete rearrangement of the organs in the gastrointestinal tract.  In my feeble mind I wondered why the surgeon couldn't just remove the tumor and part of the pancreas, and why the entire bile duct, gall bladder and section of the small intestine and duodenum would need removing, only to require a complete gastric bypass as well.  I still wouldn't know what would come for my dad in the future...a precarious tightrope walk between constipation and the opposite, as I would soon learn from my online "Whipple Warriors Support Group."  I would even learn so much as to "remind" his doctor to put him on Creon, a digestive enzyme Whipple Warriors need to digest fats without their pancreas.

All I would know is that I needed to get home for the surgery, and that the final night before his Whipple may be his last night on earth.  It was THAT MAJOR.  I would later learn that it is in fact, the MOST major surgery one could have, even over open heart surgery.  Something told me to gather the babies together with a picture with Grampy, just in case.  I wouldn't know then that that picture would become a treasured keepsake.

All I knew the next morning, when I arose early to go hospital and be there for surgery at 5 am, was my dad was at peace.  That we had no option, and that prayers were being lifted by hundreds.  All I knew as I watched countless episodes of "House Hunters" in the surgery waiting room, was that our surgeon was amazingly reputable, had a fun bedside manner, and that my Daddy was at ease.  The minutes would tick by until the doctors or nurses would call or come out to tell us things were going smoothly.  After two hours we'd learn the surgeon decided to proceed with the surgery after looking around.  Then the anesthesiologist would come out and say my dad was sailing through it like a champ, despite his age and history of A-fib heart issues.  In fact, he would say, my dad was "84 going on 60" and his job was boring that day since Dad's blood pressure and vitals were as stable as perfection. I had to force myself to choke down some lunch, the clock ticked by every so slowly, and after nearly 8 hours of waiting, the surgeon emerged, exhausted and the only words I would remember were "We got the tumor.  We got all the cancer."  I didn't know that the days ahead would bring more waiting and fear, as pathology reports would need to come back before we knew if the cancer had spread.  All I knew was that for a moment, we had hope.  I thanked Jesus and hugged my Mommy, then my hubby, then my brother and sister in law.  For a moment we had relief.  For a moment we had peace.

I would soon feel guilty that the family in the waiting room began to weep.  Their loved one wasn't so lucky that August 17th.  They mourned and grieved together, and I felt sad that their sadness existed in a room where our joy took reign.  I would never have let my mind entertain the notion that in exactly 4 months, my daddy would be gone and our home would be filled with the same tears of grief...

The next days would be agony.  Due to the effects of a long day of intense anesthesia, and the pain medications, my dad would be quite delirious and aggressive at times.   We'd have to constantly tweak the meds with his doctors and he would need to be restrained to avoid pulling out his wires (and would eventually pull out a surgery draining tube).   Glassy eyed from morphine, he would say "Sis, they think I'm looney.  Help me get out of here!" and beg me constantly to help him escape.  It was like Groundhog's day, and I'd never be able to count how many times I would have to reassure him that he was safe. I never dreamed the stress of that part of our journey, of letting the nurses care for him as we left for the night and trust them when they promised he'd never remember any of it.

I would have never dreamed the pain he would experience post surgery, the balance of a tough man refusing pain meds and us explaining that the chase of pain would never be won if he didn't give in and take them.  I would never know the precious comfort of spending 7-8 hours a day with him, watching TV shows and walking him down the hall for walks and helping him into the bathroom.  The precious gift of time I'd know to just sit there while he slept.

I would have never known the joy I saw when 2 months later I came home and he was tinkering in the garage again, albeit short rounds of tinkering interspersed with many more hours of rest.  I'd never know the agony of calling everyday to hear that his pain was returning, chemo was too difficult, and the worry I felt at the scan results.  I would never have expected the frustration I felt at doctors that seemed to shrug off his returning pain, and keep reminding us "we got the cancer" despite the positive lymph nodes and our constant prodding to do something.

My birthday would be horrible this year too, as I would learn the cancer was back that same day.  I wouldn't have expected that while giving my child a bath I would take the second call of this horrible kind and would again retreat to my bed to cry and pray.

So as I begin the year of cancer anniversaries, I am thankful for what I didn't know.  I am so very grateful for what God kept from me, for what was revealed only in small increments through time.  For if I had known then what I know now, I am certain I would have died along with my Dad.  I would have given up long before he did, and never left my bed.

And so begins the countdown to the big one...The one year anniversary of losing my wonderful Daddy, the funeral, and life beyond.

The pain is real, tangible, and as I've read, like a phantom limb pain.  While you long for the aching heart to cease, you also clench onto it with all your might.  The fear creeps in and you think somehow if you let go of the pain, you are letting go of your loved one.  That keeping the pain around will  keep the memory alive, or honor your loved one somehow.  Somedays are obviously easier than others, mornings begin now without the breathlessness of reliving the realization that your loved one is actually gone.  Less often must you remind yourself of their death, it becomes more "normal."  Photographs and videos become less acutely painful and bring about smiles of remembrance more often than tears.

And yet, days like these make you re-live the pain and you realize you aren't quite as far along as you thought.  For me, today was about remembering the suffering.  From my last "fun" trip home in July, knowing Dad wasn't ok, yet not fully knowing the truth, to the weeks of post-operative pain and balance, to the suffering of chemo, the fatigue, the constant worry, to the final weeks and days and hours of suffering, knowing there isn't a damn thing I could do to help him, and finally, knowing that was God's way of preparing me to be ok to let him go.  Because I loved him so much that I could release him, because I couldn't stand one more millisecond of his suffering.  Today I relived the pain of begging God to take him, so that I selfishly wouldn't have to bear another moment.

So people may wonder why I need to remind others of these dates and events as they emerge on the calendar a year later.  Simply stated, it is a way to honor the man he was, the battle he fought, the story God wove, the redemption that would occur.  By talking about him and his journey, it validates the war we endured, the love we shared, and the memories we made.

The night before his Whipple surgery

A precious photo I will always treasure

And I would just recently realize that after a long and subconscious hiatus, I am finally again walking that same route, past that same sidewalk square and fencepost by my neighborhood elementary school.

Perspective

A Choice to Relinquish Control and Choose Forgiveness...

On a recent walk I realized I was harboring much anger, must resentment and much blaming.  Through a series of revelations, no doubt Holy Spirit ordained, I made a conscious decision to release this anger and forgive those to whom I was holding it against.   My Daddy’s doctors, who through no fault of their own, had failed to re-diagnose his returned tumor.   Basing their actions on “clear” CT scans, they claimed that there was no “new cancer” to be found.  They promised he was fine and suggested that Christmas would be great since he had elected to stop chemo and would be feeling so much better!  

Nothing could be further than the truth!  There beneath the surface, the tumor was again growing, in the exact location from which it had been removed, and no one found it until it was too late. 

 

A sudden realization was that I’d been angry for months about their inability to order the correct test, weighing all the “what ifs” possible for treatment had they indeed found the new tumor sooner.  Perhaps they could have done Cyber knife, or a different type of chemo, more surgery, radiation. 

Perhaps…

 

All throughout our journey was a reckless intent to control a circumstance.   I cannot even begin to describe the countless occasions in which my mom, brother and I tried to make some sort of decision for my dad.  It began last summer when we discussed him traveling “back East” to look up old friends and visit his daughter.  We knew at 84, he was in no condition to drive from Kansas to New Hampshire and Pennsylvania, nor could he navigate the busy freeways, and we worried about him eating enough and finding a hotel.  Not that he was incapable, but we wanted someone to travel with him.  It was my dream to do a trip like this with my sweet Daddy, and I prayed about a way to go with him, even suggesting it, and even though he desired to go alone, he didn’t seem so opposed to me going.   It was so worrisome to us that he may travel alone, that I began to pray for a way for him to realize he needed to go with someone, a way for the issue to fix itself.  Well, God answered.  With two words I never would have imagined. 

 

PANCREATIC CANCER

 

He would be unable to travel on that desired trip, or ever again for that matter. 

 

NOT THE WAY I EXPECTED YOU TO ANSWER THAT PRAYER LORD. 

 

And all throughout his treatment there was a common theme.  Our attempt to grasp hold of shifting sand, our attempt to control that which was never meant to be under our control.  We struggled to decide if we should take him to Mayo Clinic or other cities for “better” surgeons.  We agonized many a night, finally realizing Dad wanted to be home, near his support system at church.  God brought us Dr. Osborn, his famous and very capable surgeon, who in fact had done more Whipple surgeries than most doctors at big hospitals and had even been courted by the likes of MD Anderson, Mayo, and Johns Hopkins, yet chose to stay at home in Wichita near family.

 

Later, it was the decision of whether or not he should stop chemo.  It was wrecking his body, in essence killing him as much as the cancer itself, and yet was our only guard against more cancer spreading.  Despite our agonizing and worry, my dad ultimately made the decision, with his oncologist to stop the chemo.

 

 

It was our attempt to control that called the doctor’s nurse multiple times to ask for more scans, to get the results quicker, for more meds, for less meds, FOR SOMEONE TO HELP HIS PAIN!  And although the CTs were clear, we knew deep down that something was most definitely wrong.   Pain is a tremendous blessing, in that it allows the body to signal us to something not working properly and yet, my Daddy’s back and stomach pain was continually ignored.  I prayed it was simply post surgical pain, scar tissue forming, or pain from lying around more than my daddy is used to.  I wrote into boards and asked others who had survived the Whipple surgery if they too had experienced pain.  I called my Daddy’s oncologist office and requested they draw blood work to indicate pancreatitis, requested more CTs, asked for common post surgical digestive enzymes that they had failed to prescribe, and even suggested he visit a chiropractor.   All in an attempt to control the uncontrollable, to prevent the inevitable.  To play God.  All in vain.

 

 

And the agony over deciding where he should go at the end.  Was he really ready for Hospice or would a Skilled Nursing facility be better?  We tried to count his days and determine how close he was to the end to determine the course of care.  Ultimately we decided to try the Skilled Nursing unit, which eventually was the poorest choice and where he was most depressed.  The next decision was when and if to remove him from there and we agonized yet again.  The decision was made when he went un-responsive there and then was taken back to the ER.  We easily made the decision to put him into Hospital Hospice.  But how do we decide whether or not to bring him home? Is that even possible with just mom and me trying to lift him to the bathroom?  Well the decision was made by the Hospice team.  Yes, he could go home, and he would get a catheter and wear adult diapers.  DONE.

 

Do you see a pattern here?  Throughout our agonizing, God made EVERY DECISION.  The more we clung to the pressure of deciding, the less control we actually had.  God answered each and every prayer in a way we never expected, in a way we never could have orchestrated.  And in all of that reality we were assured again, that we have ZERO control.

 

As I walked down the sidewalk I said out loud “Lord, I forgive the doctors!  And forgive me for MY anger, for MY unforgiveness Lord” I heard God quietly whisper to my heart “Forgive them Kylie, for they know not what they do!”  Jesus uttered those words as he died on the cross and they had never rung more true than in this very moment.   How can I not forgive others when Jesus had forgiven me of EVERY SINGLE THING I’ve ever done wrong?    I immediately felt the biggest load lifted from my shoulders.  A burden I had held for nearly six months was eliminated in an instant.  I realized clearly, that forgiveness doesn’t come naturally or easily.  It is less about freeing someone else from wrongdoing as it is about freeing oneself from personal bondage.  I was free!

 

And then I had another epiphany.  Those doctors didn’t really need to be forgiven.  They are just human.  They are not miracle workers or saviors. 

 

THEY ARE NOT GOD. 

 

They meant well, they did their jobs as well as they could in that situation.  They made mistakes, they missed things, and they didn’t really listen.  Yes, indeed, despite their training, despite their “superhuman” status in our culture today, they were simply human beings playing the guessing game that is Medicine.  Had God wanted to use them to heal my Dad, He would have.  Perhaps their supposed negligence was allowed by God to further His will to take my Daddy at that time.   In fact, there was nothing to forgive.  In all my attempts to control, this was in fact another situation where God’s will prevailed, and although my selfish heart longed to spend one more Christmas with my Daddy in his sweatpants, opening another tool and smiling at the gifts we got, eating a big turkey dinner, and watching “A Christmas Story” for the millionth time, alas, it was not to be.  “Forgive them.  For they know not what they do.”  God got me, it was His will and nothing I or the doctors did or didn’t do would override that will.   And although I will spend the rest of my life wishing it wasn’t so, that God could have given us more time as promised, and I will ache every day until I join him in heaven, there was absolutely

 

 

NOTHING I OR ANYONE ELSE COULD DO TO SAVE MY DADDY.

 

And so I forgave.  I forgave when there was nothing to forgive.  I realized I wasn’t angry at the doctors as much as I was angry at God.  And I told him, and He can take it!  The anger is not gone, nor is the pain, but I can now direct that to God and not to the sinful humans that I somehow expected to fix my Daddy!  And I felt my anger begin to dissipate.

 

As I near 6 months since I lost my Daddy, much healing has occurred.  I have noticed the acute breathlessness and anxiety I previously felt at the mere thought that he was gone has lessened.  A picture more often brings a smile than a tear.  I picture my Daddy in heaven running free, healthy, eating fresh fish and ice cream, chatting with his brothers and sisters in Christ, and spending eternal hours in praise of  his beloved Jesus.  

 

The lessons I am learning are immense.  The microscope God has used to dissect my heart has been intensely focused.

 

I pray daily that my will in this uncertain life would ultimately align with God’s own will.  I have come to understand that this is not always possible.   Never would I have chosen to have my vibrant, serving, loving daddy be crippled by this horrific disease, and die a gruesome death.  That will never change nor will my inept human brain ever be capable of grasping His purposes this side of heaven.   And yet, my lesson learned is that our job here on earth is to relinquish our control to the One who controls all, to submit to His will, and chose to forgive those we perceive as a threat to our selfish plans for our life.  Love and forgiveness are a choice we’ve been allowed to make in our lives to move us forward, to propel us one step further on our path that God ordains. 

My healing place

 

 

When I need to heal, process, talk to God, write or just

BE.  STILL.

 

This is where I go.  Hiking until I can find just the perfect spot to converse with God, I can escape the world just long enough to fill that emptiness my heart feels, and satisfy that craving my soul requires.

 

I used to go away and rent a cabin for a night, just to escape while living in Phoenix.  Or hike down into Oak Creek Canyon with all my textbooks to study while in graduate school in Flagstaff.

 

Nature, and more specifically, mountains are where my soul resides...

The cool crisp air, the bright warm sun, the pine smell, the rushing streams and waterfall beckon me to them.  It is where I do my best writing, it is where I feel closer to my creator.

 

In counseling we had agreed that Lee would give me 2 hours a week to use how ever I like.  Away from home, so as not to be distracted by motherly duties or housework.  Instead, I would deliberately escape for awhile and write or just be.  Something that would help me process through my grief.

This was the first week it actually worked out. 

The weather is improving and beautiful and the mountains called for me to trek their passes.

 \

Today I was overwhelmed by God's beauty.  It is then that a song came on my Ipod, that I had never heard.   It is called "Stranger Here" by Tenth Avenue North.  It tells that we are only strangers on this earth, and soon we will touch God's face and all sorrow will cease.

 

Today I was overwhelmed at the sheer beauty of God's creation and tears spilled forth from my eyes.  Not that this had never happened previously, but this time was different.  God's artistry was just exceptionally more beautiful, more colorful, more vivid to my eyes and heart today.  It had truly been my first hike since losing my sweet Daddy and he would have loved this hike, and even joined me.  I knew that if God could orchestrate the divine construction of such an unparalleled adult playground, could he not just blow our minds with the artistry that we will find when we get to heaven?  The architecture and colors, and mountains in their majesty that will exist in heaven!  And at what a magnitude they will be there, just blowing these out of the water?

 

This realization made me think of my Daddy.  How he is already playing in his heavenly playground.  He loved the mountains and just like me, always said his heaven would have them. 

I can't wait to run without bad knees and a bad neck and back, through the mountain passes with my Daddy in heaven!  And with Jesus too! 

I was just so simply overwhelmed with this beauty today that it overtook me and led me to a waterfall and rushing stream where I rested and just shut off my brain and my phone and just sat still.  Talking to God about my fears and needs and asking him for divine healing of my body.  But more than that, just being still, asking him to open up my eyes and ears and heart to hear Him speak to me. 

 

Although today I didn't hear anything, just taking the practice to be still for 30 minutes of NOTHING but rushing water and quiet was nourishing for my soul.

 

God has seemed so distant to me lately, despite my intense clinging to Him as my greatest source of comfort.  And yet, I know that the Bible says this happens.  There are times He wants you to cling, and he will take a step back, to ensure your faithful dependence.  I long for him to speak to me again, loudly, boldly, clearly.  Or to do something mighty and miraculous like heal my tired aching body and thyroid.  So far, nothing, but I feel I am on the brink with him.

 

And so I will wait some more and just today be blessed by this amazing earth he created and that I am blessed enough to live 7 minutes away from enjoying it!!!

 

Today I cried in overwhelming Awe of my God, this amazing artist.  I felt my dad for the first time since I lost him.  Not his actual presence per say but more the feeling that he was with me in the wind and trees, and that he would love where I was.  Almost the feeling that he was saying "Sis, you can't even BELIEVE what you're gonna get up here!  Just wait Sis!" in a playful way.

 

 

 

 They weren't just the painful heart wrenching tears that symbolize the unbearable pain we must go through in grief.  No, instead these tears were cleansing.  Still painful, but cleansing.  That God is good and beautiful despite all my dad went through.  That if the God of creation made this area of Utah so lovely, then what else has he done magnificently.  And how extraordinary will heaven be?  I was baffled by his Greatness today.  And that was enough.

 

 

Awwwwwwww I miss him.  I cried many tears today but I noticed something.

 

 

 

The cleansing tears meant I love a God who is still remembering me.  And that I am beginning, to ever so slowly, allow God's healing hand to touch me, and glue the pieces of my broken heart back together. 

 

 

Cleansing Tears of Relief

The Bond They Share

 

Today after dinner Macie grabbed this necklace and wanted to see Grampy.  Not an uncommon occurrence, but tonight brought a twist.

 

She pulled his picture to her and said "I miss you Grampy.  I lub you Grampy."

And then she kissed his face. 

 

 

I lost it.  Somehow, she gets it.  She misses him too. 

 

As my brain sifted through the coming memories of our lives that she would miss sharing with him, I wept.  She said "Mommy Cry."

"Yes Baby Girl.  Mommy cries.  She misses Grampy too.  Everyday."

 

 

They have a special bond.  They just always did.  I am not sure how, or why, but I believe he and God speaks to me through her. 

We prayed for him daily after he was diagnosed.  Towards the end, even when we didn't know yet that the tumor was back, she started saying "Pray Grampy.  Bye Bye Grampy."  I knew in my heart of hearts that she knew what I was denying.  That his time left with us was short.

 

She loved him and called him "Googa googa" after he always said "Booga Booga" to her when she would swing at his house. 

 

 

 

At the time of this video, he was about a week from being diagnosed.  We knew he was in pain but hoped for an ulcer or bum gallbladder.  Little did we know...

But in my heart I knew this video would become my most precious and favorite...I knew the very moment I was recording it, it would become priceless.

 

 

 

I cannot even begin to think of all the things she has said and knows, but here are a few that stand out.

 

When he was home on hospice, a dear friend brought him a big happy face balloon.  Macie and her cousins loved it.  One day recently while we were shopping at the dollar store she saw one.  She suddenly yelled out "Gampy bawoooon!  Mommy! looka!  At's Gampy bawooon!"

Of course I bought it. 

Next at the grocery store, another balloon and again she said "Ooooooh!  Gampy bawoon!"  I still wonder what the lady in the deli thought when she saw me weep.

 

 

 

At TGI Fridays eating when mom was here with us a couple of weeks ago,  there was a happy face above our table.  I would have never seen it, it was up so high.  But Macie did.  "Oooooh Grampy bawoon!" Reminding us that he was with us there too. 

It has become a comforting thing whenever she says "Gampy Bawooooon!" when she sees a happy face anywhere, her little stamper, a happy face top toy from Maddie and Hannah's birthday party,  a book, anywhere.  I believe God has used her little eye for those happy faces to remind me that my Daddy is OK. 

 

And he is HAPPY.

 

Many times she has also said "Gampy with Jewus.  Gampy eat ice cream!" 

 

 

 

 

 

 

 
She instantly adored him...
 

 

 

 

She made Grampy build something with ALL the legos. 

 

 

 

 

 

She wanted him to pick her up so badly.  But by the end of October when we visited he was too weak from Chemo and the tumor returning.  She settled for laying her head on his leg. 

 

Their indescribably special bond reminds me that he is ok.  And is most definitely eating ice cream with Jesus. 

 

 

 

 

And we will be ok too.

 

Grief is a phantom-limb pain

I read a long article about an Oncologist who lost his wife to cancer.  How no matter how much you know the treatments won't work, that they will have more risk than benefit (like chemo), you automatically kick into a mode where you do whatever you have to do.  Even on hospice I wanted them to keep my Daddy's drain in, to keep doing things they don't do in hospice, to keep the chance alive that he could be cured, to keep HOPE alive.    You just proceed to action mode, what test do we need to wait on today, what is the next step we can do to make him comfortable, full well knowing eventually all interventions must cease and you must accept the inevitable.   And yet, through it all, you long for the end, for the daily stress, worry and pain to end, for the suffering of your loved one to end, but you know what the end means and that is unfathomable.  It is such a precariously unbearable tight-rope walk, without a steadying pole to carry. 

 

 

I love what this doctor said about grief.  He hit the nail on the head for me and I totally 10000% agree.

 

.

"It turns out that Hollywood has grief and loss all wrong. The waves and spikes don’t arrive predictably in time or severity. It’s not an anniversary that brings the loss to mind, or someone else’s reminiscences, nor being in a restaurant where you once were together. It’s in the grocery aisle passing the romaine lettuce and recalling how your spouse learned to make Caesar salad, with garlic-soaked croutons, because it was the only salad you’d agree to eat. Or when you glance at a rerun in an airport departure lounge and it’s one of the episodes that aired in the midst of a winter afternoon years earlier, an afternoon that you two had passed together. Or on the rise of a full moon, because your wife, from the day you met her, used to quote from The Sheltering Sky about how few you actually see in your entire life. It’s not sobbing, collapsing, moaning grief. It’s phantom-limb pain. It aches, it throbs, there’s nothing there, and yet you never want it to go away."

Grief Timeline in Photos

One of the things my counselor and I worked on together was a timeline of events from diagnosis to present.  My therapist read the timeline and my comments, feelings and events over and over and over again in several sessions.  Although repetitive, I can now see its therapeutic value.  In hearing someone else read the timeline, I quickly realized that each time I heard it, different events would evoke different emotions.  It was amazing how I would cry in one part on one repetition and it wouldn't affect me on another reading.  Desensitization had occurred at times and I have realized it was meant to move me through the most painful parts.  Well, here they are in pictures.  I'm so grateful for these photos now.  It is ever so clear how cancer wrecks a body, a body God meant to be only temporary, that houses a spirit that lives on.  No other event in my life has made that more clear to me, then watching my beloved Daddy's body deteriorate.  It is amazing to me, that reading Hospice booklets are spot on, and the nurses can pinpoint how much time is left by the obvious signs that a body is shutting down.  Signs I never ever knew until I watched it happen before my eyes.  It was textbook and somehow comforting to know that he was not the only one that this had ever happened to.  That actually, we ALL will experience the decline of our bodies, maybe not in such a violent way, but that this is how it was meant to be.

 

And so, the journey in photos...

 

 

August 16, 2013

 

The night before his Whipple Surgery to get the damn tumor.  Which they got ALL OF.  I wish the surgeon had never told us later "I almost backed out once I saw it wrapped up in one of the arteries of the colon."  All my ears needed to hear was when he said "We got it ALL."  I immediately hugged my Mom, and cried "THANK YOU JESUS!!!"  We thought we had so much more time...

 

 

 

Dad getting labs for chemo.  I was so blessed to go with him!  He was such a sport.  All the nurses LOVED him.  Seriously, he was the BEST PATIENT!

Those nurses adored his baby blue eyes!

 

 

Late October, 2013.

 

Me with him at Chemo.  I just love him.  What a trooper.  He is truly my hero.

 

 

On my birthday, December 1st, I got the worst news of my life, a second time.  The tumor was back on his pancreas in the SAME spot where it was removed and ressected before.  How could this be after TWO CLEAR NO NEW CANCER CT scans!?  This is obviously where medical technology/science failed our family by providing us so much false hope.   He was so weak after not recovering from chemo the last time. (He decided to call it quits on chemo, it was wearing him down.  He was too weak.  Little did we know the cancer was growing back which explained his pain.  We wanted to believe it was adhesions or scar tissue from surgery, but alas, the back pain and stomach pain was the tumor again.  Our oncologist told us he'd be feeling great by Christmas and we could have a good holiday all together.  But he never recovered.  That has been one of my greatest struggles, to let go of the FALSE HOPE that the medical community provided.  That maybe it would be our last Christmas, but he would be feeling great and we could have a great one.  His continuing pain was ignored for 2 months...

 

 

So we moved him to Skilled Nursing unit (or as Mom and I called it, "Unskilled Nursing")  He was sooo upset to be there.  The tumor was inoperable, he had two drains placed to drain fluid.  He didn't want to die in a nursing home.  They were HORRIBLE there.  I practically had to give him his pain meds myself.  They wanted to do extensive PT and OT to get him strong enough to go home, which sounded like a good idea in the beginning.  Until we all realized it was actually time to call Hospice, that he was in horrible pain.  I promised him secretly I'd get him home.  This was one of the worst nights of my life.  Macie and I arrived in Kansas on December 6.  He took one look at her and lost it.  He said "There was so many things I wanted to do with her."  It was the most heart wrenching thing I have ever witnessed.  He was SO VERY SAD.

 

 

I sat with him in the Nursing Unit and he still looked pretty good.  So peaceful while he slept, yet SO very depressed when awake.  That night, 30 minutes after we got home, the nurses called us and said he went unresponsive and since we had a DNR did we want to revive him?  We said yes, since Brad and Erin and Lee needed to get there!  Mom and I rushed to St. Francis Hospital and didn't know if he was dead or alive.  It was the second worse night of my life.  He was awake and alert when he got there, and said he passed out when he tried to get up to go to the bathroom and the nurses freaked out.  Further evidence they were NOT adept at caring for a terminally ill patient.  We teased him that at least he got himself out of there. :)  We met with Hospice and they moved him to a Hospital Hospice Room immediately, but not before I suffered a major anxiety attack and was admitted in the room next to him for an EKG!  I told them it was 1 am and I hadn't eaten and I was having a panic attack and give me some juice and they finally did, with a half an Ativan and I was fine.  They wanted to run all kinds of tests and I said "I thought my dad was dead.  I had a panic attack.  Let me go." 

 

 

I spent this night all night in Hospice.  My dad was so much happier there.  I can't say enough about Hospice nurses.  They are special.  My favorite one, Don, told me he worked 3 days on and had 4 off but usually picked up another shift.  When I asked him if he was trying to make extra money, he said "No.  There is more that I could be doing so I want to work more.  More people who need my help." 

They are amazing. 

 

 

 

I cherished this night more than any other in my life.  I literally sat there watching my Daddy breath.  I noted the date and time.  I knew that this night would be etched in my memory forever.  I took a video of his calm and quiet breath.  I never knew that someone breathing would be so therapeutic.  I needed to be with my Daddy.  This night was one of my greatest blessings of my life from my Heavenly Father.  God had warned me on my last trip home in July, before diagnosis that I should begin to prepare to lose my dad.  I didn't know how or why or when, because I was convinced he'd live to 100.  But this was another time when I could CLEARLY hear my precious God tell me to CHERISH this night.  It was one of the greatest gifts I have ever received.  To simply Be.  Still.

 

 

He breathed peace into my soul. 

 

 

Everyone arrived.  Dad's face lit up to see his babies and even more so when the Social Worker said he could go home.   He was SO amazed that a hospital bed would be waiting for him and everything would be set up. 

 

 

Getting him home was a HUGE answered prayer.  We put him in the tiny guest room so that he could see out the window and watch his girls swing.  He said "This is so great Sis.  Wow, this is great."  He was sad when the girls quit swinging, he wanted to see more.  We got 2 great days from him, with chatting and visiting guests.  The last "surge of energy" as the Hospice booklets told us would happen.  He even got his appetite back and we spoon fed him clam chowder and baked beans.

 

 

Then, things turned for the worst.  I have so many memories of just sitting by his bead and playing Gospel Cds for him.  It amazes me that every song that came on was about going home to heaven.  It made me cry but comforted him...

 

I spent many nights holding his hand or falling asleep with my head on his bed.  It hurt to touch him too much by then or else I would have crawled in bed with him.  I wish I would have slept on the floor, but I knew his taxed breathing would be too upsetting. 

 

 

This was a couple days before he slipped into a coma and was incoherent.  I still thought he looked pretty good by this point but now when I look at the picture, I shudder.  His body was failing and his spirit was leaving.  We did everything for him.  His drain leaked and even the visiting Hospice nurses weren't sure how to take care of it.  The drain was draining into a colostomy bag that leaked all over his clothes and bed.  We had to get Brad, Mom, Erin and Me and all  of us hold him and change him and get the area cleaned.  It was the dignity thing. Soon it got too painful for him to be moved and we couldn't change his bedding and clothes each time.  I still wear a pair of his sweatpants with a bile stain and I will never stop.  It reminds me of the hell he lived and the hero he is.

  He also wore an adult diaper and we changed them.  I had a friend ask how we did that.  I told her that when it is your parent, you take care of them.  It is innate and you just do it without another thought.   It is amazing to me how we start as babies, with diapers, eating only liquids, cannot walk, cannot control our bowels or bladder, and we return to that exact state. 

 

 The pain got so great that we had to call Hospice in on December 16th at 10:30 pm.  We went to giving him meds every hour.  He was groaning in pain.  It was unbearable for me to watch and I began to bed Jesus to take him so he would no longer suffer.  The nurse was my favorite, she sat and held my hand and spoke of Pennsylvania, where she and Dad were both from.  He grunted and she said he was still with us partly, listening to our conversation and acknowledging that he heard about Pennsylvania, but that he was also partly gone.  She was so comforting.  I told her about our adopted baby boy and that I was so sad my daddy wouldn't get to see him and she assured me that he would.

 

I spent till about 1:00 am holding his hand and finally retired on the couch.  I was due for medicine duty at 6 am  and I remember waking up about 5 and hearing nothing.  By that point his breathing was so labored and thready and it alarmed me to hear nothing, but I decided to just lay in bed because I was so tired and would be getting up soon for meds.  My mom came and woke me up at 5:30.  I jumped up, startled and said "Is he gone?" She said "No, but I think its close.  You should get Brad."  I ran downstairs and woke up Brad and Erin and by the time I got in there he was gone.  My mom said he had breathed his last two breaths, clutched her hand and his eyes locked with hers and she felt he was wholly present in the room.  I got Lee and we all went in.  I hope he saw us gathered around before Jesus took his hand.  I finally got to crawl in bed with him and laid there for a good hour.  He was gone.  What a shell of a indescribably wonderful human being was left behind.  No need for that broken down body.

 

The day was a fog but we made funeral arrangements. 

 

The funeral and burial were beautiful.  They couldn't  have been more perfect.  The Gospel was clearly presented several times and two ministers spoke and Brad and Erin and I were table to share as well, by the Strength of God.  My biggest regret is not recording the service which could have easily been done because the sermons were amazing, the music perfect and the gorgeous full military funeral was wonderful.  I hope Jesus let him watch. 

 

 

Gorgeous 21 Gun Salute.

 

There you have it.  Many of the pieces of my grief timeline shared via photos.  There are infinite more stories and words I could share from this time, stories, events, etc. but this will do for now.  Next I will share about the night I spent with him in Hospice at the Hospital, and what I wrote there that I shared with him at home.  And another entry will be what I shared with him at the funeral.