Grief and Acceptance - Part V (Promoting Acceptance)

The preceding four posts on grief and acceptance set the stage for a closer look at how patients can be Healthy Survivors at the end-of-life. In other words, how can you both get good care and live as fully as possible after a diagnosis of terminal disease?

As discussed in "When 'And' Means 'Or'," and in the final paragraph of Part II of this series, getting good care can be at odds with living as fully as possible. My experiences with cancer recurrences have reinforced my two beliefs about this tension:

• When faced with a new diagnosis, "getting good care" usually trumps "living fully."
• The distress associated with making wise treatment decisions will be outweighed by the peacefulness I will experience for the rest of my life because of my confidence we did the best we could.

Interestingly, the time lag between my cognitive and my emotional acceptance became ever-shorter with each successive recurrence, which I attribute to -- Been there, done that! -- my familiarity with the situation. Importantly, the shorter the lag, the sooner I could see and embrace opportunities for joy in everyday life. 

A diagnosis of terminal disease involves unique stresses and challenges. That's why the conclusion of the editorial by Prigerson buoys my hope that future research will provide insight into how to promote Healthy Survivorship at the end of life:  

"Research that determines ways to promote peaceful acceptance offers the promise of offsetting the pain and misery frequently associated with dying and death."

 

Comments

[Bill Kleine]

Before I recurred [17 1/2 year remission from kidney cancer] I was a volunteer counselor, meeting many amazing men and women in the midst of very trying times. The following story is precious to me:

Get Smart

David Smart.  I loved David.  The only thing that he really remembered enjoying during his freshman year at KU was kidding around with a girl named Lisa in the massive dormitory cafeteria on Daisy Hill.  And so he left.  Went as far away as a Kansan can go.  Joined the Navy.  Because he was brilliant, they put him on a submarine.  He served out his tour of duty and then returned to KU to become an engineer. 
 
David loved music and played the saxophone.  And so he drove up from Lawrence for the Corporate Woods Jazz Festival.  And there was Lisa.  And they were no longer teenaged kids.  They remembered laughing and began loving.  Life is good.  They moved in together, building on that love.  Then, quite suddenly, David began having seizures.  I feel certain he had an accidental exposure to some lethal form of radiation on the sub because, within six months of his diagnosis, a friend of his from the boat was also diagnosed with Glioblastoma Multiforma, or GBM as the initiated like to call it.  And so, one fine fall evening, David walked into our Cancer Support group on the campus of UMKC. 
 
David was, as God playfully intended, very Smart.  And, with an engineer’s mind, he took a scientific view of life.  It wasn’t that he didn’t believe in God, he was just a very “where’s the beef” kind of guy.  Math is the language of science and he understood it very well.  And so, when the doctors explained to him that he had 6 to 9 months to live, if they did surgery, he knew he was a Dead Man Walking.  We spent that entire first session discussing what statistics can and cannot tell us.  It seemed to be making sense to David, especially given the fact the dire predictions of brain failures given to him by the same doctors never materialized.
 
As the weeks passed into months and then years we noted a change in David’s perspective.  One of the gifts that can come with cancer is an intense awareness of “the day”.  His focus became more and more rooted to the present moment.  He and Lisa began visiting with the priest who built the St. Lawrence Center up at KU.  They decided to get married.  As time went on and David continued with Gamma Knife’s and other, more invasive procedures, their plans continued to evolve as if none of that mattered.  They bought a home in the Kansas City area.  They traveled when they could.  David even got a small job working at the clinic where Lisa practiced her physical therapy.  And David began a catechumen class at Holy Spirit Parish.
 
Hope is mysteriously intertwined with faith.  At least it most definitely was in David’s case. I saw the two grow together by leaps and bounds.  I don’t think he ever lost his “where’s the beef” logic.  He simply seemed to lose the concern about not being able to answer questions all the time.  And so, having listened to him carefully, I concluded that he knew he was living on gifted time.  He pursued all avenues of treatment—even did one that had only been tried on six people in Japan—the doctors at the VA were willing to do anything for David.  But those things were a only side-line for him.  He was far more interested in Lisa than in “what would happen.” 

Because of his love, he used the logician in him to make contingency plans.  For instance, they bought tickets to a far-off James Taylor concert—a mutual obsession for them.  And, just in case, he wrote a note to his beloved and placed in the pocket of the sweater he knew she would wear to the event.  Since David had died a couple of months before the concert, Lisa wasn’t even going to go. At the last minute she changed her mind, but not her choice of clothing, and found his note there.  She found many other such personal and intimate tokens expressing his love.

His other love had become for God. Knowing he probably would not be strong enough to make it to Easter, they had a special and personal baptism done at a regular Sunday Mass, with a reception afterwards. It was one of the more moving baptisms I have witnessed because the priest’s own Spirituality had been affected just by knowing David and experiencing his faith and perpetual joy.

As cancer so often does, it continued to spread through David’s brain. Lisa called in Hospice and had a bed set up in the living room so David could look out on the day through their window. Again, the experts warned David and Lisa of the dire times ahead of them, but David was spared their draconian predictions. As time went on he slowly lost everything. The last time I saw him, all he’d really lost was his stamina. We visited while he laid in his bed, but it was a joy-filled visit and David was very up-beat. As time was so short, Lisa drew him closer to her and we were kept to the side. You see, when you reach the point of profound fatigue, you become unable to regain the energy you expend and so she kept this last of him to herself.

In his last weeks David began having visions of Christ and Heaven. Lisa went to a priest about these and he told her that it is unclear what such things are and what they mean. He advised her to simply listen to him speak and not interrupt, except to acknowledge to him that she was listening. Eventually the tumors even took away his ability to speak. One night, however, he asked Lisa to come over, lay down beside him and he began to give her a backrub. As she lay there his aphasia completely disappeared and he told her how much he loved her and how much she had done for him during his 2 1/2 years of illness. Her told her to go and get some sleep but she clung to him, not wanting to leave. He assured her that he would not die through the night and that it was important for her to have a good night’s rest. Lisa went over to the couch where she slept and did. The next morning David had a massive convulsion and, like each one of us must, he died.

He had embraced the fact that his life would end and spent some time with Lisa planning the celebration of his life. It was one of those funerals that refuse to be sad. Or better, the joy of all the life he lived was so intertwined with the grief of his death that I felt my love for him more keenly than my loss of him. Three priests came to mourn our loss with us and celebrate his life. Each new him personally and shared a different aspect of his life with us. As we walked out of the church we listened to Louie Armstrong sing:

I see trees of green…red roses too
I see them bloom…for me and for you
And I think to myself…what a wonderful world

I see skies of blue…clouds of white
Bright blessed days…dark sacred nights
And I think to myself…what a wonderful world
The colors of the rainbow…so pretty in the sky
Are also on the faces…of people going by
I see friends shaking hands…saying how do you do
They’re really saying…I love you

I hear babies cry…I watch them grow
They’ll learn much more…than I’ll ever know
And I think to myself…what a wonderful world

[Bill Kleine]

Dr. Harpham,

With cancer patients I do not know intimately I typically avoid most direct references to religion, however with David Smart's story it was an intrigal part of how he came to understand and accept death. I know it is long and may not be appropriate, but it is a story I wanted to share, at least with you. I am at home recovering from my first round of interleukin 2. I am hopeful that I will show response and re-enter the hospital on March 19, but I am at peace with whatever happens. That peace is difficult for me to explain without referencing all the prayers people have offered on my behalf. Whatever the cause, I am greatful to find "today" at the center of my focus.

Bill Kleine

[Anonymous]

Thanks. This has been really helpful.

[Wendy S. Harpham, MD]

Dear Bill,
Thank you for taking the time and effort while dealing with your treatment to offer a story that may comfort and inspire readers who follow this blog.
I especially appreciate your sharing the lyrics of Armstrong's song, because you've highlighted a key idea: Peacefulness at the end of life can open your eyes to all that is beautiful, joyful, love-filled. Peacefulness paves the way to living until you die.
With hope, Wendy