Coauthored by Linda Davidson Meyskens
On November 18, 2014, I published my first ASCO Connection blog, entitled “White Coat Conversations,” and announced that I would be providing subsequent entries every 4 to 6 weeks. A long list of travails interfered with my good intentions, but now I am back.
What galvanized me to pick up the pen again? For the past several years I have spent a great deal of time, both locally and nationally, exploring the response to events surrounding end-of-life care and death and contributed, along with four senior SWOG colleagues, to an analysis and commentary on the first 18 years of the Oregon End-of-Life Option Act.1 This led me toward an exploration of end-of-life care in patients with cancer, including the philosophical, existential, ethical, and practical consequences therein.
Recently, an event brought home the significance of how devastating news is received and how we react to a potentially life-changing message.
On Saturday, January 13, 2018, at 8 AM, the following message was sent simultaneously to all the residents of the state of Hawaii:
BALLISTIC MISSILE THREAT
INBOUND TO HAWAII.
SEEK IMMEDIATE SHELTER. THIS IS NOT A DRILL.
The next day I was meeting with one of my long-time colleagues to review activities in our laboratory. I knew that she was from Hawaii and that her parents still lived there. I asked, “Did the nuclear missile alert effect your family?” With moist eyes she answered, “I missed the initial phone call from my parents and later discovered on my voicemail a message from my dad saying, ‘Goodbye… we love you.’ I was frozen and tried to call them back. By the time we connected, the alert was over and I learned that my mom had been in the process of trying to nuclear-proof our house. I was never so scared in my life.” And then we returned to our work.
The next day my wife and I saw a young man whom we had gotten to know over the past few years. We mentioned that we were leaving for Hawaii the next day, and he shared the news that his brother and his wife were in Honolulu for their honeymoon. When his brother received the message about the missile alert, he texted our friend to say, “I guess I will see you on the other side.” Our friend’s first thought was how he was going to care for his brother’s children.
The following day we arrived in Honolulu, as I was scheduled to visit the Hawaii Cancer Center as a member of their external advisory board. Wondering how people there had responded to the alert, we began asking those we met about their reactions. Their answers were varied and ranged from profound to casual, but the following are representative of the range of responses.
A young waitress had been at work in a large hotel when everyone’s phone pinged at the same time with the emergency message. “Chaos, gasps, tears, hundreds of people all saying goodbye. No one had been trained on how to respond to this situation. And then 38 minutes later, the retraction of the alert. Everyone was still upset and drained.” We told her that we were glad that she was okay. She grasped my hand, her eyes glistened, a striking resolve to her stance.
We were talking with the travel concierge at our hotel, a lovely spirited middle-aged woman. With a little prompting, she told us about her mixed heritage that included Hawaiian, Filipino, Korean, Chinese, Japanese, and German. “I was at a prayer service with 30 other people. Everyone’s cell phones went off at once. Gasps, tears. A voice in the room saying, ‘Oh my God’. The minister looked at his cell phone and said, ‘Let us pray’. And that is what we did until the message cancelling the alert appeared 38 minutes later. Relief, thanking God.”
We met a wonderful pianist at a jazz club. We asked him how he was affected, and he said that he had not been overly concerned. His said that his daughter called him in a panic and he told her that it was probably a hoax. The next evening we asked another musician whom we have gotten to know over the years if he was effected, and he said that he had been sleeping, and that he did not have the opportunity to react.
Hopefully you now understand why I was energized, at this particular time, to write this blog. The first time a patient or loved one hears the words “you have cancer,” or learns that an unexpected recurrence of a “cured” cancer has occurred, is devastating. On an individual basis, it is as frightening as a nuclear attack on one’s home or community and the emotions of fear, coping, denial, relief, and resolution are not too much different.
I say to all caregivers, “Remember that when your patient hears the word ‘cancer,’ it is akin to a ballistic missile attack on their very being.” A surprisingly small percentage of health professionals are equipped to do this well and several studies have documented this deficiency in our training.2,3
Below are two poems that I have written that deal with these emotions.4,5
The Single Sob
When cancer visits your universe,
a companion feared, not wanted,
after the shock and disbelief,
silence the redoubt most often taken.
And the journey of cuts, drugs, big machines,
touchstones to your presence on this earth,
on this battlefield and beyond
the tears flow and flow, quite unexpectedly.
And the loneliness, an innocent prisoner in a solitary cell,
a survivor’s hope, when hope is in short supply.
Believing in miracles, because that is all that remains,
talking to me about your dreams.
My eyes glisten as you struggle to continue
not wanting to disappoint me, your protector.
A single sob from within belies
the pain, the grief, your journey.
I meant the words
to be gentle,
but they hit you like
a cannonball through soft jelly.
Your eyes grew wide
and you began to shake,
like a sapling in a hurricane
you bent, and almost broke.
It can’t be me.
No, not me.
And the words rumbled
in a steady stream,
a torrent of emotion,
of hopes and dreams.
And all we could do
as your life shattered.
And my wet eyes
were not for you but for me,
wondering if I had somehow lost my calling.
The crushing in my chest told me it wasn’t so.
Not a miscalculation of aim.
Just too much to hear.
Some words so awful they can break
men’s backs and atomize a soul.
- Blanke C, LeBlanc M, Hershman D, et al. Characterizing 18 years of the Death with Dignity Act in Oregon. JAMA Oncol. 2017;3:1403-6.
- Ben-Arye E, Keshet Y, Livas M, et al. Crossing the death threshold: experiencing multi-disciplinary end-of-life integrative oncology training. Support Care Cancer. 2018 Feb 1. doi: 10.1007/s00520-018-4068-6. [Epub ahead of print.]
- Nelson KE, Wright R, Abshire M, et al. All things death and dying: health professional students participating in the Death Café model. J Palliat Med. 2018 Feb 2. doi: 10.1089/jpm.2017.0440. [Epub ahead of print.]
- Meyskens F. Believing in Today (Fithian Press, with permission); 2014: p 45.
- Meyskens F. Aching for Tomorrow (Fithian Press, with permission); 2007, p. 25-26.