Sunday, August 17, 2014

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.

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