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Waking Up Dying

by bdietrich on May 21, 2014

The last thing I wanted to do is read about a friend’s death from brain cancer.

Then I couldn’t put it down.

The book is Waking Up Dying – Caregiving When There Is No Tomorrow, a self-published memoir and critique of the medical system by Robert Duke, husband of Shearlean Duke, who died.

It’s a well-written, remarkable compilation of narrative, e-mail updates, lists, sidebars, and medical documents edited and organized by Cami Ostman of Bellingham, WA, a writer who did her own book on trying to marathon on seven continents.

The Amazon link is: http://www.amazon.com/Waking-Up-Dying-Caregiving-Tomorrow/dp/0975328611.

Shearlean (pronounced ‘Shur-lean,’ and southern-born) was chairman of the journalism department at Western Washington University, where I taught for five years. While my employer was Environmental Studies, I worked with Shearlean while advising Planet Magazine, a student environmental quarterly.

She was a vigorous 60-or-so when I met her, a Los Angeles Times vet who had overcome a tough early life to not only be successful and competent, but generous and supportive. Nice! Not every administrator can claim that.

Bob was a technical writer. The two approached her illness with journalistic intensity, questioning, fighting, hoping, and coping.

Out of that came a remarkably honest account of the inevitable unhappy ending, the yucky responsibilities of a primary caregiver, and the ups and downs of the modern medical system.

Shearlean had a malignant stage IV glioblastoma brain tumor, one of the deadliest cancers known. For better and worse, Bob Duke (now 72) was a determined badger in the doctor’s office while advocating for his wife.

In one memorable exchange, an exasperated administrator reminds him that there are other patients they are worrying about. And he replies he has only one. That pretty much sums up the emotion that boils with terminal illness.

“Waking Up Dying” is not a beach read, but readers who have confronted serious illness – or are old enough to expect such experience soon – will find Duke’s candid sharing quite informative, if not necessarily comforting.

The diagnosis was terminal from Day One, but the fight went on for 17 months. Shearlean died at age 64.

Detection of the tumor had occurred in Kenya, where Shearlean was organizing an overseas college program. The first jolt of pain was so excruciating that she thought a snake had bitten her. It was only when the couple got home that the jolting pains were diagnosed as a tumor.

What followed was surgery, radiation, chemotherapy, a limited return to work, a last-gasp visit to California to be with family, and death.

The author came away frustrated by vague answers, delays in medication, and the medical bureaucracy. His appendices are titled, “Rants.”

Medical professionals might reply that Shearlean got expensive and extensive care for a tumor that all knew was 100 percent fatal from the beginning.

For readers in the middle, the book is valuable as a caregiver account of the confusion all of us face when negotiating the hospital world. The book is a memorial to the memory of a brave journalist, and a contribution to a problem that never seems to have an entirely satisfactory answer: what is the most humane approach to end-of-life treatment?

{ 1 comment }

Cami Ostman May 21, 2014 at 2:46 pm

A lovely tribute to both Shearlean and the book, Bill. One of the reasons I so valued working on this with Bob is that this book is also a love story. Bob’s love for Shearlean and his commitment to her care endeared him to me and made me send out a prayer to the universe that we should all be so lucky to have someone advocating for us the way Bob did for Shearlean.

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