Retracing Steps

Tending to Endings (sixty-five)

In my last post, I wrote about learning my husband has liver cancer, and so it seems only fair to begin with a brief update on our medical journey. Many of my readers know John and while I also have a Caring Bridge site set up for those who know John or want to follow to learn more, this will give an overview which leads into this post’s topic.

John and I have spent much of the past three months going through the very complicated preparation for him to be approved for a liver transplant. It has involved four trips to Murray, Utah (five hours from Boise) dozens of medical tests and interviews, and five outpatient surgeries.  I will write more about this someday when I am not so tired from having just lived it, but it is a relief and a joy to report that John has been approved for transplant by the team and our insurance. He is officially on the list.

Because cancer affects the liver differently than some of the other reasons for transplant (It’s complicated, and not all bad for us that they do it this way) there is a six-month waiting period before John will be moved up to a priority spot where he is likely to receive a liver. That will be October 1, and therefore, we plan to move (temporarily) to the Salt Lake City area to await transplant at that time. We of course don’t know how long we will be there, but from what we have learned so far, we expect it to be between two and six months, including wait time and recovery.

In the meantime, John is doing well. The tumor has been zapped by microwave ablation and is now an empty crater and moon dust (not the technical term). He still feels no symptoms from the cancer or cirrhosis. He is playing tennis at least four times a week, and working from home part time as he was before all of this. We are both feeling very grateful to have made it through the transplant prep process and for all the love and support we have received from so many.

I was talking to my friends about how sometimes I function better in the intense time of a crises than after the worst of the danger has passed. Like the stories (maybe urban myths) of people who receive super-human strength when they need to lift a car to save someone’s life. For three months the priority in our life was very clear and I was very focused. Now that John’s prognosis looks good and we have some room to move about, my decision-making skills have unspooled. Do I go for a walk or finish my ethics paper or catch up on laundry? Do we go camping or to visit friends or have the kids over? I have about eight books by my nightstand, and three on audible and I am likely to switch from one to another mid paragraph. Seriously, one reason I haven’t written here in awhile is each time I start an essay I can’t decide what it is about.

And what is it that I’m doing with my life again? How did I get to be a person writing about death and going to chaplaincy school and using the term end-of-life in regular conversation? And there are so many threads to this life project that may or may not turn into vocation. Do I work on my book, my blog, or my research paper? Do I make a plan to get back to hospice volunteering first or teaching. I’m keenly aware that time and energy are limited resources and so these decisions feel weighty.

Deep down I know myself well enough to realize this is grief and it will pass. So many things are put on hold or slip away when cancer becomes the story. I am both grateful things are going well and very sad that my love has a life threatening illness. People respond to grief differently and for some reason one of my biggest symptoms is difficulty making decisions.

Yesterday, during my morning meditation, something I read made me think, rather than trying to figure where I am going, maybe I should retrace my steps.

This brought me back to a moment in my kitchen when I did know what I wanted to do next and began moving towards the end-of-life field. The full arc of the story, of course, is longer than one moment, a series of deaths of women I was close to in a few short years. The moment of decision that comes to mind, though, was when I was sitting alone at my new kitchen that John had remodeled it to bring in more light; I had just returned home after six months living the confusing, beautiful, excruciating journey of my mom’s decline, and her leaving. I felt like I had visited terrain I had been unaware even existed. I could’ve used a guide, I thought, some preparation, a few anecdotes from those more familiar with the landscape.

When I imagine where this place is, Alaska comes to mind—or what I imagine Alaska to be as I’ve never been there, either. I envision land steeped in ruggedness, days so long they are surreal, nights that never end. I envision weather that changes without notice and beauty dangerous enough to require guidance to enjoy. Or even to survive.

Only, this place that I had now visited three times was somewhere we are all destined for. For most of my life I was okay not thinking about that very much. And then I stood next to the bed as Susan and then Ellen and then my Mom crossed that rugged, strange terrain and death got my attention.

That day in the kitchen I had some vague notion of eventually providing a space for resources and workshops and community. I’m still unclear. There are practical and emotional and spiritual questions surrounding death—all of which seem to overlap on top of one another during times of crises and loss. There are a thousand small decisions and a few big ones and you have no idea which ones you’ll get until they start to glimmer into view. It seems we could help each other with that but it would require acknowledging that someday we will die.

I am from a family of passionate readers. When I was a child, my grandparents read to all the grandchildren regularly and its one of my fondest memories of time with them. I can still hear the unique cadence of each of their voices as they read. My grandma died when I was a teenager, but my Grandpa Vic lived until I was in my thirties, and we often traded book titles and talked about writing and literature over the phone or through letters. When he died of cancer, I was in the middle of reading Stegner’s Angle of Repose and I so wanted to be able to send him a copy. That is what death is, I thought. It’s not being able to read the next book no matter how good it is.

And as I write all this down I suspect that the other reason I can’t decide what to read or where to camp or what I want this post to be about is because with mortality so vividly on the horizon, I want to read and write and live all of it. And I want to do so meaningfully. And deeply. Which of course is an impossible order, but also casts this indecisiveness in new light. There are worse problems to have during a difficult time than to want to be fully alive.

This retracing of steps did not divine my future or even clarify which project I should start next. But it reminded me that this journey I am on started from a place of desire–to be helpful yes–but also because for some reason, I’m really interested in in Alaska.

More Resources

This month I listened to two audio books recommended by friends. The first is Ann Patchett’s Precious Days which is beautiful and honest and includes a number of essays about loss and mortality and love. Her writing reminds me that one of the reasons we need more stories about end-of-life is that people are different in how they experience similar events. There are plenty of places I identified with Patchett, and then others where I am reminded of how different we all are, too, and how a talented, honest writer can help me see and understand a wider emotional range. This makes me feel more empathetic, but also more connected. It is such a generous book.

And then, interestingly, the day after I finished Patchett’s essays someone else recommended What We Wish Were True: Reflections on Nurturing Life and Facing Death by Tallu Schuyler Quinn. Quinn also lived in Nashville, and Patchett’s bookstore hosted an event for her family and her book just last month. What We Wish Were True is a gorgeous love letter that Quinn wrote after receiving a terminal cancer diagnosis at age 40. I have to remind myself to breathe while I’m listening; it is exquisitely beautiful and painful in turns, and it is full of wisdom. There is so much more I want to say about this book so I will likely dedicate a Tending to Endings post to it in the future.

Thank you for being here,

Laura

Tending to Endings aims to build community and conversation around end-of-life matters. If you would like to receive Tending to Endings each time I post, please leave your name and email below.

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