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Monday, October 8, 2018

When our Cancer Journey Doesn't End with Happily Ever After...


Just months before mom's pancreatic cancer diagnosis in 2010, a brave, young woman was sitting in a doctor's office receiving the very same diagnosis.

Her name was Dayna.  And she, too, decided to start a CaringBridge site to keep family and friends updated on her progress.

For weeks, months and now years, we have been following the cancer journey of this beautiful soul...

Dayna shared her heart with sweet humor and breath-taking candor... One of her signature sign-offs was to list "3 Things I Loved about Today."  She had a gift for gratitude that simply overflowed, despite the most difficult of circumstances.

On August 13th, 2014, we read her husband's last entry on their CaringBridge site...

"Forget the strong man; this one is about the strongest woman I have ever met.

She was told she had merely a few months left with us and went on to live a few months plus four years.  Later, after 7 different types of grueling treatments, she was again told to get things in order.  Told she likely had a few days, she stretched those few days into months.

Ultimately, cancer picked the year, the month, maybe even the day; but our darling Dayna picked the moment to let go.

Just days before her passing Dayna wanted me to post on Facebook and CaringBridge that she was in the hospital again.  However, after comparing herself to the boy that cried wolf, she asked me not to once again tell everybody that this was "it."  Instead, she said I should "just tell them I am on a teeter-totter."  I promised I would post for her.

My intent was to do so sooner.  Please forgive my tardiness; I was busy loving and enjoying her 24/7 until Friday morning, and busy loving and mourning her since.  As she requested, I will give you a brief account of her last days, but first something to make you smile.

When Dayna asked me to write on her blog she said to write it in my own style, but "be sure not to forget the poo and the pee, you know, the good stuff."  That left me with a bit of a dilemma, as those are not subjects that I am very comfortable talking or even thinking about.  All the same, I will share a moment that I think shall suffice.

Rick, Dayna's hospice nurse came to the house one day not long ago to check up on her and see if we were in need of anything.  As he sat down on the ottoman and began the barrage of questions that are routinely thrown at patients, he asked:  "Dayna, how are your bowels moving?"  Without hesitation and in a sincere tone, Dayna answered: "good, and how are your bowels moving Rick?"  Looking to the ceiling while contemplating, he took a few seconds and then answered Dayna "pretty good.  You know, in all my years on this job, nobody has ever asked me that question before."  "Hmm," she replied with a shrug, "It only seemed polite to ask."

And that was classic Dayna: quick, witty, sincere, caring, funny and controlling the room with that signature smile throughout it all.  A combination that always put a smile on the faces of those who luckily shared time with her.

At 7:50 AM on Friday, Dayna and her smile moved on to a place I like to believe is gentler, kinder and more peaceful (with a lot of dancing).  The Saturday prior she had trouble breathing at home and needed an ambulance to bring her to the U of M hospital.

There she spent a couple days highly sedated and in a breathing mask that enclosed much of her face, completely surrounding her nose and mouth.  She didn't eat and would periodically drink through a straw when we quickly unhooked the mask and pulled it to the side.  Worst of all, she could hardly communicate:  her mind was jumbled from the high dosage of medications to suppress her shortness of breath, and the mask itself, which actually forced air into her lungs, made it difficult to be heard and really frustrated her when she tried to communicate.  She resorted to writing things down.  She persevered, and managed to get all the things she wanted organized and carried out communicated to her girlfriends, family and myself.

A beautiful thing happened halfway through her nearly one week stay:  we found a high flow nasal canula that allowed Dayna to remove the big oxygen mask.  It freed her mouth and allowed her to be heard when she spoke and she began eating.  Like always, I began thinking she was on the mend and we started looking for breathing devices to get her home again.  I even sketched up my own high-flow system to be made at home after the medical supply store told us that there wasn't an at home option.

With her breathing seeming stable and her will to converse with visitors we opted to lower her meds to find a sweet spot where she was lucid as possible without having panic attacks from the shortness of breath.

We found that spot for a couple of days, and she was still hoping to make it back home to her own bed.  However, the disease was still doing its thing and it was eventually realized that going home would no longer be an option.  Bravely, politely, she asked only to be moved to a bigger room where more people could comfortably visit her.  They made it happen.  Happily.  And perhaps with a nudge from wonderful Dr. Lou Emil.

On the transport from one room to the other she had a terrible panic attack that took some time and meds to calm.  It was horrifying to watch and no person should ever have to endure such fright.  This is the true pain that I am happy and grateful that she will never again be faced with.

Thankfully, that evening was nothing short of beautiful.  Friends and family came to visit.  I drove home and brought her back a surprise.  Stella licked every salty inch of Dayna's face and arms, and Dayna smiled and sobbed with tears of joy.

That evening the guests left and my parents took Stella back home.  Dayna's father, George, and I remained.  She asked me to pull up a seat on her right hand side, and her dad sat in the recliner on her left.  We shared some cupcakes the nurse so kindly brought us, and Dayna chatted and chatted, refusing to let either of us go to sleep.  I didn't want to anyway; it was the most lucid she had been since being admitted.

The three of us held hands until around 6:30 AM.  "My two favorite men in the while world," she affectionately said at one point... It was so magical that I should have known it couldn't last.

The fact that she was so lucid probably had much to do with the fact that the infused drugs were losing a bit of their effectiveness, and because of such they were not able to do their job at suppressing her shortness of breath.  She had another breathless panic attack, and ultimately had to be put back in the restrictive full-face mask.  Once again, the horror of her panic attack is hard to put into words.  After some time of quiet thinking, she made it known that she could not face further days of breathless torture.

What happened in that last hour is very personal.

She chose to remove her oxygen mask.

We held her hand and whispered kind words.  And at one point she told her father and myself  "thank you guys.  I know this isn't easy for you."  Thinking of others right till the end.  It was awesome and awful.  And I am so thankful that I was with her through it all.  I am also very thankful that her father was there as well.

In the next hours we made contact with family and friends and a few came to say goodbye.  After breaking the news to one of Dayna's dearest friends, she asked me to whisper a message into Dayna's ear.  I did.  And then I sat back up and just stared towards the window.  Suddenly, something tapped me in the back of the head.  Startled to the bone, I looked around but nobody was near me.  I looked up and down.  Nothing had fallen.  There was some force that bumped my head.  Maybe it was the non-coincidental sign I asked her to give me.  Maybe it was her letting me know I didn't need to whisper to a broken down vessel that no longer confined her.  But it was Dayna.  No maybes in my mind. 

Now to end it with a smile.  Going back to right before they transferred her to her larger room.  She sat at the edge of her bed, excited about hermove, and evidently even more excited about seeing Stella.  It had been five days since she had last had a dose of puppy love.  I carried the second load of belongings to our new room down the hall and walking back into the small room I saw Dayna throwing her hands over her eyes, and holding that smile that seemed to grow by the second.  

"What are you doing, Silly?" I giggled.  "Wait, wait," she said.  "Do you like games?  Let's play a game."  Hands still firmly over eyes and smile big as every she asked, "Who are you?  Do you have hair all over your body?"  (Um...some but not all over)  "Do you like to lick me all over the place?" (Dayna, I think...)  "Is your name Stella Bean!"  She tore her hands from her face and looked around for the dog.  Laughing, I explained to her that I only left for two minutes and the very minute they moved her into her new room, I would quickly go home and get her Stella Bean.  And they did; and I did.  And seeing how ecstatically happy both Stella and Dayna were when they were reunited was pure beauty to behold.  Exactly, I bet, what it is going to be like when Dayna and myself reunite too.  I can't wait.

There was a moment that day, either when being silly about guessing if Stella was visiting or just making the nurse smile like she always did, when Dayna said, "Isn't it fun talking about serious things in a silly way?"  I know she thought it was fun.  That was what made her journal entries such a joy to read for everybody.  I know that all her CaringBridge fans helped her get through the rough times and helped her celebrate when the days were great.  On behalf of Dayna, the strongest person I ever knew, and myself, thank you all for being part of this wonderful Circus.

Three things I love today:

1.  Realizing that I could never again be scared of death, knowing she is waiting for me.

2.  That she left Stella Bean to watch over me for the time being.

3.  The love and support of family and old friends and all the amazing friends and family I gained through Dayna.

I love you Dayna.  Smile down on us today  :)"




Sometimes our cancer journey doesn't end with that Happily Ever After... Sometimes we fight endless battles only to lose the war.  It will never be fair.  Never be right.

Dayna's Story of Love has touched me and stayed with me in ways I could never explain.   Perhaps it was the way her husband shared he could never again be scared of death, knowing she was waiting for him... It is a haunting grief framed in the most beautiful of love stories...

Thank you Dayna for being a beacon of hope on this dark journey.

You have been a Priceless Gift...

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