The Transcendent Time Continuum of Hope

Everything Happens for A Reason and Other Lies I’ve Loved, a book by Kate Bowler, came out last year from Random House and to considerable acclaim. At the age of 35 years, Bowler, an assistant professor at Duke Divinity School and mother of a young son, was diagnosed with stage IV colon cancer. Fortunately, her cancer is the “magic” kind, as Bowler likes to call it, meaning it responds to a new kind of cancer therapy known as immunotherapy. Take a look at her website and you’ll see her there in photos smiling and looking the picture of health.

The book was an interesting read for me because it gave a human face to therapies that I write about in my medical writing day job. For several years, a good part of my work has been writing about these therapies that help the person’s own immune system kill cancer cells. The book was an interesting and compelling read, also because it showed a person coming to terms with living in a state of great uncertainty about the future.

As Bowler writes,

“Plans are made. Plans come apart. New delights or tragedies pop up in their place. And nothing human or divine will map out this life, this life that has been more painful than I could have imagined. More beautiful than I could have imagined.”

Given that I’m writing a book about hope, I was also interested in how hope might be at play in her story. I found that while throughout the book, Bowler both struggled with and lived with hope, the topic of ‘hope’ per se was never overtly discussed. It felt a bit like a missing beat; I had wanted her to take on hope. Not that this at all takes away from her book or her story, it was just a perhaps selfish desire on my part to learn how she thought of hope.

Then the end of last month, Bowler had a cover story in the Sunday Review section of The New York Times. In “Hope Isn’t Only About the Future” (see below for link), she describes how her cancer diagnosis and treatment took away the future tense of her life and grounded her in the looped present comprised of treatment cycles. Hope as typically used, pointing to the future, seemed irrelevant when what she wanted was all now: life with her husband now, life with her son now. For her, hope had been a “kind of arsenic that needed to be carefully administered.”

She writes about trying to resolve the present:future dichotomous time continuum on which hope dwells for her as a person living with such uncertainty. Towards the end of the essay, however, she writes words that emerge from her personal struggle that spoke to me, and my guess is, they might speak to you as well.

“The terrible gift of terrible illness is that it has in fact taught me to live in the moment. But when I look at these mementos, I realize that I am learning more than to seize the day. In losing my future, the mundane began to sparkle. The things I love—the things I should love—become clearer, brighter. This is transcendence, the past and the future experienced together in moments where I can see a flicker of eternity.”

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Note: The essay’s title in the online version is “How Cancer Changes Hope.”

[Photo: Taken from a corner of the cover illustration in the article’s print version in The New York Times.]

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What's right in healthcare

A couple weekends ago, my husband and I made a half-day trip down to Rochester from Minneapolis. The newly warmed air and sunny sky - hopes of spring! - made us long to get out of town and take a drive. You probably know that Rochester, Minnesota is home to the sprawl of Mayo Clinic, the original Mayo Clinic. What we learned on that short excursion is that it is also home to the only Dunkin’ Donuts in the entire state of Minnesota! We paid a visit to both.

The visit to Mayo was only a stroll around a small fraction of its buildings. The picture at the top of this post is of a decorative carving on the outside wall of one of the Clinic’s historic buildings, the Plummer Building, built in 1928. I love that image of the man (probably a physician but not necessarily a physician) curled around the microscope.

The day after that excursion, my mother-in-law went into the emergency room with what we learned was a heart attack. She’s fine now, and home, thanks to the work of the physicians and nurses there. I witnessed such kindness and gentleness from them. Proficiency also.

I work with physicians all the time in my medical writing work. There are a few that I especially admire, and I’ve labeled them in my head as the doctor I would want to go to should I ever develop the disease they treat - although I hope to never develop the diseases they treat and don’t live in their area anyway. The last couple weeks I’ve been pushing through a project with one of these doctors, a doctor that approaches her work with great skill and earnestness. I once heard her say, in response to a question about whether she could make such and such a decision based on a phone call or email from a patient, that she needs to actually touch a patient. I loved that she said that.

There’s another doctor I’ve worked with, also with the label of “physician of choice,” who during a blackout in his city mentioned that he was visiting his hospitalized patients with a flashlight while his colleagues were waiting it out. I wrote about another such doctor nearly 10 years ago here on this blog. I’m thinking also about a doctor who saw my mother this winter when she was admitted to the hospital for pneumonia. The doctor heard my father coughing next to her bed and unwrapped the stethoscope from around his neck and took a listen to his lungs. No concern about liability or billing or coding. Such kindness! I’m thinking also of my own primary care doctor who is retiring this spring. I’ve gone to him since he was a young doctor and I was newly graduated from college - but for a couple short bursts due to moves or insurance changes - and I’m so grateful for that continuity and care.

There’s a lot wrong with our health care system, and patients and physicians are all taking a hit. But there’s a lot right with the people working in that system. I just wanted to take a moment to shine the light on that.

Practicing walking with a broken arm

I’ve been off this page for a couple weeks; I'm not the "good" kind of blogger that has a library of prewritten scheduled posts. I broke my arm and it has set me behind in many things. It wasn’t a bad break, not the kind that requires surgery and pins and weeks of physical therapy. It didn’t even require a cast. But I didn’t know that when I fell. The degree that it hurt and the way it wouldn’t move gave me the message that this indeed could be bad.

In the spirit of being vulnerable with readers of this blog, I’ll tell you I felt scared as I walked home with the fresh break, the arm that was whole cradling the arm that was wounded; scared as my husband drove me to the emergency room; scared as the radiology technician positioned my arm for X-rays. It wasn’t so much that I was afraid of a broken arm as I was afraid of what I imagined lurked behind the broken arm: the weeks of not being able to work, which mean for a freelancer no sick days and no income, missing deadlines and failing clients; the potential for another crisis to come on the heels of the break, which I'd be less able to handle given the break-related limitations. An Ebola outbreak, for example! While waiting for Vicodin to take effect, why not imagine the worst? I could fall again and break the other arm. I remembered my son’s wrist break that required three surgeries to fix. Irrational fears but fears nonetheless.

I’m old enough that I’ve gone through plenty of other difficult times that more reasonably warranted fear and from which I’ve learned the lessons of coping. I’m grounded sufficiently in faith and experience that I should long ago have learned the basis of courage for every situation. But the arm broke and I felt overwhelmed with potential consequence and became afraid.

The next day, assured of no surgery and with the arm neatly immobilized in a fiberglass splint and that oh-so-effective painkiller in my bloodstream, I felt more relaxed. I dipped into a book on my reading stack. Learning to Walk in the Dark by Barbara Brown Taylor. I didn’t make it far into the book (painkillers make you sleepy), but the part I read was enormously helpful and made me feel not so bad about the fear I had felt. It linked “practice” with fear.

Taylor describes how fearful actual darkness can be to walk in, literally, and how for many of us, in our current lifestyles and neighborhoods, we have little experience walking in the pitch dark. She asks, “How do we develop the courage to walk in the dark if we are never asked to practice?” Here, of course, is her transition to darkness as metaphor for the feared unknown. We need to practice walking where we feel fear, practice walking into the unknown.

Practice implies imperfection. There is no requirement to be brave at every turn. We are broken and get afraid, and it is time again to practice walking anyway.

Reading labels

A commercial has been on television lately advertising the perks program of a certain drug, and it compels me to put on my medical writing hat. With every box of this drug that you buy there’s a perk inside that apparently makes the drug worth buying in case you had any doubt about buying it for its ability to alleviate the troubling condition from which you sought relief in the first place. I know the power of perk programs. I recently succumbed to the pull of one for another type of product, a nonpharmaceutical, and admit its effect is to make me choose that product preferentially rather than others in its genre when I run out and need to restock. 

The problem with the commercial’s advertisement of this specific drug’s perk program is that this drug should never be taken for more than 14 days or more often than every four months. Mr. or Ms Consumer should not be going back and back to the drugstore, this time trying for the steak dinner with a purchase, and two weeks later trying for a free spa appointment. If the condition that this drug addresses doesn’t go away in 14 days, you are supposed to stop taking it and see your clinician. Reading the box will tell you this but it’s not what the commercial or even the existence of a perk program implies.

Your clinician and pharmacist should tell you the full story of any drug you’re taking or considering taking; in addition or alternatively, as in all areas of life, you can educate yourself to a large degree. Everything about how and why a drug is supposed to be taken is included in the drug’s product “label” (also called prescribing or product information). It’s not really a label, like one that is glued to a box or bottle, but a multi-page document that details everything about the drug, including its chemical makeup, relevant clinical trial data, dosing instructions, known and potential side effects, and more. (For over-the-counter drugs, the label is not as detailed.) Every word in the label is carefully controlled and must be approved by the Food and Drug Administration. As an addendum to the label, there is often a patient medication guide that reiterates what consumers most need to know in easy-to-understand terms. 

Anyone can access these drug labels; you don’t have to be a healthcare professional. Go to this advertising-free site operated  by the National Library of Medicine: DailyMed. Enter the generic or trade name of the drug in question in the search box and go from there.

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Boomers: roll up your sleeves

Of course it pales in comparison to the holidays that bookend it, Mother’s Day and Memorial Day, but this past weekend held the first ever National Hepatitis Testing Day. How did you celebrate? Did you roll up your sleeve for a needle poke and a one-time hepatitis C test? If you are a baby boomer, specifically if you were born between 1945 through 1965, that is exactly what the Centers for Disease Control and Prevention (CDC) will soon recommend that you do.

I often work on projects related to hepatitis in my medical writing day job and have seen this recommendation coming for awhile. Several years ago the Institute of Medicine (IOM), an independent medical think tank, issued a report about the lack of awareness among the public and healthcare professionals concerning hepatitis C, as well as other types of hepatitis, leaving many infected individuals not knowing they are infected and, consequently, untreated. The problem with leaving hepatitis C untreated is that chronic infection can lead to liver disease, liver cancer, and/or death in a significant number of individuals. In response to the IOM’s report, the U.S. Department of Health and Human Services issued a report of their own, mandating, among other things, that the CDC expand and strengthen their hepatitis C screening recommendations. 

Epidemiologists have long been studying the large bubble of infection in baby boomers. The CDC says 1 in 30 boomers are infected and most have no idea, despite the fact that recommendations for screening based on risk factors have been in place since 1998. Reasons for the bubble are complex, but it boils down to the fact that hepatitis C was in the blood supply for a long time before researchers figured out a) what it was, and b) a way to test for it. It wasn’t until 1992, yes recent history, that donated blood was widely tested. And of course, there were, and are, other ways to have contact with infected blood other than official transfusions. 

CDC’s recommendation isn’t final yet. A public comment period is open from May 22 to June 8, 2012, after which the final guidelines will be written and published. You can read the CDC’s fact sheet here.

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(photo: hepatitis C, U.S. Department of Veterans Affairs)