“Living and Dying Without a Map”: Companionship for People Suddenly Rocketed to Planet Cancer

I have never had cancer, and neither has any close member of my family, other than my grandfather who died when my father was still a child. So I don’t know. But I imagine a diagnosis of terminal cancer, for oneself or one’s dearest, to feel like being yanked away to a unknown world on the dark side of the moon–a planet which healthy people don’t think about enough to realize they’re not thinking about it.

So I wouldn’t normally be drawn to a book titled Living and Dying Without a Map: One Family’s Journey Through the World of Glioblastoma, despite the hauntingly lush black-and-white photo on its cover. I only chose this book because I knew the author, and I thought I knew the story.

Nancy Ewert, a long-time Lopez Islander, is also one of the founders of the Quaker Meeting here which I attend. And my very first day attending, the month we moved here–August of 2010–I walked into a Meeting focused on support for the Ewert family. Nancy and her husband Greg and their three nearly-adult daughters were still reeling that day from Greg’s shockingly sudden diagnosis of brain cancer at the age of 61.

Greg–a beloved teacher at our island’s middle school–was given a year to live. He lived for two. And I watched, humbled, from the sidelines as this family that represented the very core of our island community struggled to reshape its life on Planet Cancer.

Photo by Greg Ewert. The man was, among other things, a hell of a photographer.

There are many cancer books out there. I cannot speak to how they compare to this one. All I know is, Nancy’s book is one of the rawest, truest forms of memoir I’ve ever encountered, and here’s why: it is composed entirely of journal entries. And almost entirely from those two intense years.

God bless Caringbridge. Greg Ewert’s brain tumor introduced me to the website, whose founders envision “a world where no one goes through a health journey alone.”  I’ve become more familiar with it since 2010, through the health challenges of other friends. In this book, Nancy’s and Greg’s Caringbridge postings become the main narrative vehicle, carrying us along on their story now as much as they did almost ten years ago.

But these sections are interspersed, even more intimately, with entries from Nancy’s personal journal  at the time. I can’t imagine the guts that took.

Nancy’s first Caringbridge post in the book begins, “Greg has been diagnosed with a brain tumor. It is shocking, terrifying and sad for all of us.”

But her first personal journal entry reads, “Oh God, Greg has a brain tumor. How can I even write these words?”

Catch the difference in tone? Ripping that curtain aside, allowing readers into that personal, personal shock and pain–THAT is what makes this book different. Like being ushered from the waiting room straight into the ICU.

Nancy shares her exhaustion. Her anguish at being so needed by husband and daughters and family and friends that nothing is left for her own emotional needs. Her anger at having to explain why she’s even feeling angry. Gratitude, yes, plenty–but also pure seething confusion. These entries lay it all out there–sometimes very, very admirable, sometimes–whoa! Honest! And REAL.

And even though I’ve never lived on Planet Cancer, if and when I have to? These are the words I’d turn to–not for comfort, but for company in my fearful despair. Which, I suppose, may be a kind of comfort after all.

Greg’s Caringbridge entries form another part of the story’s arc–an insider view, obviously. His first one reads:

Only one week ago our family vacation was rudely interrupted by a trip to the urgent care facility because I was having difficulty forming my words–not like me!

Over the course of the next nearly two years, until Greg finally had to switch to dictation and then stopped writing during those last weeks, he shares his outrage at having his future ripped away; his wry-but-fierce personification of his tumor (“B.T.”) and his strong, humbled, grateful spirit (“the Griz”). He shares the deepening of his gratitude for his family and loved ones and community to a point impossible to describe without maybe imagining of the lyrics of “Amazing Grace.” He shares humor, and–

oh, I thought while reading, how unfair that I only got to meet this man after he’d been given a year to live!

But then…how much more of a gift is this book, bringing him to life for people who never got to meet him, or travel to Lopez Island, but are trapped on Planet Cancer and looking desperately for someone to please, please just hold their hand?

If you or a loved one have had to make that journey–Nancy Ewert’s book will hold your hand as you walk in the darkness.

 

“I Wish I Had a Colon to Oscopy:” Why I Quit Whining About Preventative Health Procedures

For my New Year’s present to myself, I had my first colonoscopy. Don’t worry, I won’t share pictures (though the doc assured me they’re gorgeous).

From what I hear, colonoscopies are pretty much tied with root canals for Most Desired Procedure. I’ve since learned that, unlike root canals, the awfulness of the C-scope lies in the prep, not the actual procedure, during which one is switched off like a light by some kind of magic anesthesia. (I’m pretty sure it’s the same drug that Michael Jackson used to take to get good sleep, and I can now see the attraction–except for the horrible cotton-mouth afterwards).

But the prep? Drink a gallon of electrolytes–essentially salt water–in two sittings. That’s one half-gallon, followed by extensive toilet time that I won’t go into…then get up next morning, O joy, and drink another. Fast. Just thinking about it makes my stomach curdle.

I whined. Or I started to. Then my husband reminded me of two people dear to me: one who, at age 62, has no colon at all, and another who is no longer with us because she died. Of colon cancer. At age 42.

(orig. image courtesy publicdomainimages.net)

(orig. image courtesy publicdomainimages.net)

There’s nothing like considering the alternative to make one appreciate an unpleasant health procedure as a blessed opportunity. As my colon-less friend put it, “I wish I HAD a colon to oscopy!”

The same logic would apply to root canals, right? Just think of someone you know with dentures. Knee surgery? Wheelchair. Prostate exam? You see what I mean.

That doesn’t mean I’ll be waltzing in to my next mammogram singing, “Heigh-ho, heigh-ho, it’s off to boob-squishing I go!” But I certainly will remind myself about my friends with breast cancer, and I’ll shut up.

I know I can get some testimonials here about the gift of preventative procedures. Please, share your story. What nasty procedure are you grateful for?