Friday, May 9, 2014

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. 

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