Impromptu #4 — A Scavenging Field Trip

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On a recent walk with my dog, Clover, I found the object depicted above, located at the gate that separates our back yard from the rest of the neighborhood, a house lawn’s width away from a sidewalk leading to the elementary school. I knew Clover and I would travel back through the gate, and I didn’t want her to slurp up the thing while I wasn’t looking. So, I plucked the nearly round growth (can you make out the odd contours of facial features?) from the ground and pocketed it.

Later, when I’d returned home and Clover was occupied with something else, I took it out to examine it. I was convinced it was a mushroom, but I knew that one could never be sure about random backyard growths without some training. My father taught me that some things resembling edible mushrooms were poisonous.

I let it sit for a day, leaving it on a chest of drawers, hiding behind something so that a wandering Clover wouldn’t find it and eat it. When I remembered to show it to my husband, I told him about my urge to slice into it. He recommended that I do that on the front porch rather than in the house. What would emerge? A noxious thick fluid? A baby mushroom?

I decided to save the mushroom-like orb for a few more days so I could show it to my friend and assistant, Joan.

I knew that it was a find. A major find. Perhaps I should write about it, as I’d written about so many other finds over the years.

The whole experience helped me to remember that one of my favorite types of writing prompts involves a scavenging field trip.

This prompt, like many of my favorite prompts, is a) an amalgam of several ideas rolled into one, and 2) a prompt focusing on objects. The prompt can be separated into two parts – scavenging items and writing about the items.

Scavenging Items: Choose a Method and then Choose a Venue

Choosing a Method

Method A: If you have a reliable, charged cell phone and like to keep your hands clean, use this photo option. Go on a walk and take ten pictures of things you see along the way. Make sure the photos you take are close ups, capturing lots of good detail. I am continually amazed and impressed by the minute details I see on others’ Facebook pictures – the water droplets on a flower’s leaf, the translucence of an insect’s wing, the angle of a buck’s antler as it juts upward, intersecting the rays of the moon.

However, keep in mind that your photos do not have to capture only beautiful things. They can be photos of half-torn pop labels, rusty car parts, or a pile of cigarette butts. You have the liberty of selecting the ten subjects of your photos.

Method B: Go on a walk and find ten items that you can BRING HOME to use for your prompt. As Ms. Frizzle from the Magic School Bus show would say, “Get Messy!  Make Mistakes!” The key here, however, is safety. We need to be careful about sharp edges of objects and/or potentially poisonous objects. For this reason, I encourage you to WEAR GLOVES! Take a doubled bag (paper within plastic or vice versa) along with you.

Choosing a Venue

This step is a little tricky because it depends on where you live. Ideally, you would be able to do your scavenging in your neighborhood. Neighborhoods have such strong associations for all of us, so making discoveries right near your home can be powerful. But some neighborhoods are admittedly much cleaner than others. If you live in a neighborhood or town where everyone is always on top of their litter, rejoice!  This is a positive in so many ways!  Your neighborhood my not yield the best kind of items about which to write, however.

An alternative is to plan a field trip in advance. This kind of adventure can add to the fun of the writing prompt. I live near a lot of suburban things; in addition to living near an elementary school, I also live near a major state university (Michigan State) which is built around the banks of a river. River banks can provide some good scavenged material. But so can strip malls. And beaches. There are just so many possibilities, as long as you make sure to be safe.

Writing teachers like me often use objects for writing, just as artists use objects for still life portraits. But part of the inspiration for this version of the exercise is an assignment my daughter’s AP History teacher gave her class related to found objects and collages created of such objects. We know that anthropologists and archeologists learn a great deal about earlier cultures simply by examining their tools, their refuse, the scraps from their daily lives. So, think of your items as historical finds.

The Writing

Once you’ve found ten objects that you like, give yourself freedom to work with them. You don’t have to create a story that uses all ten objects (unless, of course, you want to do so). For me, association always arrives in my brain first, so I naturally think of riffing on one or more of the objects. But you can establish your own pattern. For example, pick three items, and use them to trigger thoughts for a brief imaginary tale. Or find a way to put the items in categories that you make up (red things, sharp things, circular items left on the side of the road) and create a piece by working with those titles.

Give yourself twenty minutes to write about the items you’ve found, unless you want to keep going. But save a few ideas for another writing session; there should be lots to work with.

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When Joan came over a couple of weeks ago, I brought out the ball-shaped mushroom thing. Joan is a nursing student who also works as a medical scribe, so she has that intense scientific curiosity about living things. We decided to dissect the thing together. I got out a paper towel and a knife.

Then I cut in.

Yes, the experience was, as we anticipated, a bit anti-climactic. No spiders crawled out, which is what Joan had secretly been hoping for. No blood came out either. No noxious, thick fluid. The mushroom ball wasn’t hollow at all. It was solid, made of the same spongy material that appeared on the outside. Maybe it was a real mushroom, after all!

But to be cautious, we wrapped it up in the paper towel and gave it a trash can burial. I washed my hands and the knife.

It was a good, Bill Nye sort of day, even if we didn’t figure out anything revolutionary.

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Impromptu — Writing Prompt #3 — Someone Else’s Perspective

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I was quite excited about the last writing prompt I posted, yet as I wrote out the steps, I realized that the exercise would have gone much more smoothly had I been in front of the classroom delivering the steps myself.  Pausing between complications.  Brainstorming examples to illustrate the most complicated steps. I decided that this week, in contrast, I must find an easier exercise to explain, at least, if not to complete.

I travelled back in time to a prompt I used in the “Writing the Novel” course I taught at Lansing Community College in the early 2000s. An exercise rooted in fiction primarily, it was meant to direct the writer toward character development, point of view, and voice.

This version of the exercise, however, does not have to be fiction.  Nonfiction or memoir will work just as well, because the exercise begins with you as a person.

Brainstorming, 5-10 minutes

Writing, 20 minutes

Steps:

  1. Think about how you view yourself as a person as well as how other people might view you. Think about your traits, good and bad, and the kinds of things people say about you. Are you conscientious? Witty? The life of the party? A nervous Nelly (whatever that is!)? These words and ideas are mostly adjectives, but think about nouns that people use also, identity words like “artist,” “lawyer,” “pipe fitter,” and “pastry chef.”
  2. Now, slide a bit away from that person, that character who is YOU but not you. Step out of your body to observe. Let the writer part of you creep across the room to a spot from which to survey things. Note: the photo above sort of captures this step.  I was “creeping” as I looked out the window, viewing my daughter from an elevated room in the place we stayed during vacation. Imagine that the person in the picture is YOU being observed by someone else from a different perspective.
  3. The original exercise I explored nearly two decades ago said something like, “Using the first-person point of view, write about yourself from the perspective of an opposite sex relative who is older than you.” That instruction provides two little twists beyond the original instruction of thinking about your traits as a person – the opposite sex perspective and the age perspective. This works great if you are binary cis-gendered.  If you are not, think about an older relative with a sexual orientation that you view as “other.”  What we are looking for here is difference, so binary distinctions aren’t crucial.

Hopefully these steps seem straightforward. To play out an example, I have written from the perspective of an uncle who is describing me. Many of my uncles are deceased, so I must dig back to my childhood. I’m thinking about my Uncle Max, my mother’s brother. Here are a couple of sentences in Uncle Max’s voice (first-person), describing me as a young girl:

I wish I could tell you what makes that girl tick, but I just don’t know.  She and her sisters were supposed to come to our house for a week to spend time with their cousins.  Esther, her mom, was going to have a week alone at home to just relax and have some quiet time.  But the first thing you know, Vern comes in the door after his drive to Mt. Clemens with the oldest and the youngest, Linda and Lori.  Dawn stayed home.  She couldn’t leave her mother.  She wanted to, but at the last minute she just couldn’t leave her mom, Vern said.

I know kids get attached, but why is she so shy?  My sister is not shy, and it amazes me that she could have such a shy daughter. Dawn gets sick, too. Asthma.  I guess it’s just as well.  We wouldn’t know what to do with her if she stopped breathing.

  1. If you don’t like the idea of writing a first-person monologue from this older, opposite- or other-sex person, you could try a dialogue in script form in which the older, other character engages in a discussion with the younger person (the YOU character) and the script reveals something significant about the you character’s personality.

I tried to capture something of my uncle’s voice here, in this first-person narration that I did from his perspective.  I also tried to capture some of what would be completely incomprehensible to him – my shyness – because like my mother, he was a pretty extreme extrovert.

  1. Try to write for twenty minutes from this first-person voice of the older other.

 

Remember, if these instructions seem confusing, there is really no way to screw up a writing prompt because…

 

… the whole point of a prompt is to just get you writing; there is no wrong or right.

Just write!

 

Impromptu – Writing Prompt #2 – Containers/Vessels

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I mentioned in an earlier blog post that I wanted to put up a writing prompt weekly. Alas, I fell short of my goal, and this post has been delayed. But finally, I’m now delivering another writing prompt to help those who are searching for something to write about or those who want to explore journaling as a way to move through life and chart the joy they experience or the sadness and trauma they must confront in life.

I had the idea for this prompt firmly in place in my brain BEFORE my family members and I went on our much-anticipated trip to Ireland, but then, on our very first day in the lovely city of Kenmare, I snapped this photo on a family walk. It captures exactly what I wanted to evoke in this writing exercise.

I can’t remember where I found the original word that prompted my version of this writing exercise. That word was vessel. I wish I could credit the source, but I offer thanks and appreciation to the unknown party that planted this word in my brain.

I want to look at containers and vessels as objects that we employ at various points in our lives to hold or carry things that are important to us in one way or another. But I also want to get at the idea that we have words in our lives that are mundane and common, like container, and words that are more exotic or highbrow like vessel. Likewise, we have words or terms that are highly specific like samovar or crepe pan, and words that get at more generalized, broad concepts, like kettle or pan.

Brainstorming, 5-10 minutes

Writing/Riffing, 25-45 minutes (can be divided into sections)

Steps:

  • Think about the word container, which I would call a common or garden-variety word. It can be used as a very general term to describe a lot of objects that carry or hold things. Brainstorm ten common or garden-variety words that refer to a container of any sort OR words or items that you think could be used as a container although that might not be their first designated purpose. The words can be common in terms of their meaning but also in terms of the way they sound.
  • Think about the word vessel, which I would call a highbrow word – highbrow or lofty as opposed to common. Brainstorm ten highbrow or lofty words that refer to vessels of some sort. The words can be highbrow or lofty in terms of the way they sound when you say them or in terms of what they make you think of.

My container words: laundry basket, paper bag, ashtray, newspaper, sandbox, pill bottle, spoon, wagon, bucket, hand

My vessel words: samovar, cedar chest, hearse, Lazy Susan, camelback, kayak, syringe, decanter, toilet bowl, bassinet

You will note that I have categorized these words as containers or vessels loosely; there is no right or wrong.

  • Select five or six of these words from either category that resonate with you; the words can be from both categories as well. Words that resonate tend to be words for which you have a fully formed memory or a flash of association. That flash of association can be a personal association or some image you saw once. Advertisements that we’ve seen over the years tend to stick with us – the girl on the front of the Morton Salt container or the three guys who make snap, crackle, and pop noises on the front of the Rice Krispies box. For obvious reasons, words that trigger strong emotional responses or memories are often the best ones to work with when you’re writing, but words with fewer connections can also yield good results.

Note: Feel free to use any of the words I have listed from my brainstorming.

  • Riff on each of these words, one at a time, for 5-7 minutes each. As I mentioned in my last writing prompt post, I’m a big believer in writing guru Peter Elbow’s use of the term “focused freewrite.” When you allow that one word to be the focus of your writing, you are letting yourself be free within the confines of that word and its associations for you. Let each word you’ve chosen be your focus, as I’ve said, but feel free to throw many ideas down for that one word OR develop one idea at length. Those who write extended metaphors or comparisons like to hang with one idea for a bit. A reminder: original freewrite guidelines encourage the writer to keep the pen (or computer keys) moving, even when the ideas stop. One can do that by repeating a word over or a phrase, something mundane, like, “where’s my idea, where’s my idea,” repeatedly. If you are a slow writer, as I am at times, you may find five riffs to be overwhelming. Break it up, if need be. Do two riffs at one sitting and three riffs at another.
  • When you’re done riffing, put your writing away for a few days, unless you have fallen madly in love with what you’ve written and want to keep going. When you come back to it, consider viewing it as a “lyric essay.” The lyric essay is a relatively new structure or genre of writing that combines poetry with the traditional first-person type of essay. It focuses on words and their arrangement in much the same way that a poem does, yet it encourages writing with the kind of tangents, digressions, and lack of transitions that makes it a more experimental or fragmented.
  • Allow each word to serve as a heading for a section. What is the connection between the words?  What do you think this collection of riffs is about?  Should you discard one of the words and do an additional riff on another container or vessel word that would suit your purpose (which you’re still discovering) or your subject matter better?

Walt Whitman said, “I contain multitudes.” My daughter keeps an extended version of this quote on the wall of her Philly apartment. For me, it’s the perfect three-word statement of this writing exercise. “I” indicates that the exercise is to be written in first-person and focused on the self. “Contain” gets at the idea of the container or vessel. “Multitudes” captures the sense of the huge variety you can allow yourself in the palette of riffed words.

What do you contain?  Happy Writing!

Too Much With Us

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(Photo of Glenoory Bay, Donegal, courtesy of Alison Hirschel and Gene Burns)

In one of my last posts, I talked about being a tortoise rather than a cheetah.  I recently saw a friend and roommate from college, Marilyn Beals, and she reminded me that I am a cheetah when I eat – at least I was in college – but that may be because she is a tortoise when she eats!  She wanted to affirm for me that I can still do some things quickly.

For months now, I’ve been thinking of a William Wordsworth sonnet, “The World is Too Much with Us,” which is a poetic companion of sorts to my cheetah vs. tortoise post. Although I was trained as a fiction writer, I have read and taught enough poetry over the years that lines from poems often come to my brain unbidden, which happens, I think, when you love words, and also when you share/teach the same poem to four sections of literature-based composition on any given day, as I did in the 1980s at James Madison University in Harrisonburg, Virginia.

At some point I must have committed the sonnet to memory, because different lines come to me at different times. Wordsworth was an English Romantic poet, and the poem is often described as asserting his frustration with the Industrial Revolution and the way in which it moved humanity away from nature, robbing the human spirit of mystery, beauty, and the capacity for wonder. His message certainly resonates in our current era as well, even though we long ago moved past the Industrial Revolution and into the Information Revolution.

Wordsworth’s message also resonates for me on a slightly different plane. As I have intoned “The World is Too Much with Us” to myself in the last few years, what I’m positing is that I have become too slow for the world. Because of the speed of everyday life and my slow pace, I can’t keep up. We are out of step, the world and I.

Yet I am not alone, and recent events have underscored this point for me.

The dissonance and the space between my speed and the speed of the world is no more evident than when I am traveling and must manage the GPS system on my phone while driving. I expect the navigational guide to reign on the screen; when a random text or email message interrupts the navigation depicted on my phone, my blood pressure rises, and I panic. If I lose my navigational screen, I will be lost. None of the paper maps on the seat next to me will do any good after dusk has arrived and I ‘m in the middle lane of some six-lane expressway. My hands grip the steering wheel; my neck moves as if on a hinge, snapping right, then left to check the lanes around me. “The world is too much with us,” I mumble to myself, and what I means is that I am frightened at how old I have suddenly become, how inept I feel in this world that moves at a pace even my adolescent self could never have managed.

I wrote the paragraph above several weeks before I learned of the sudden death of one of my daughter’s high schoolclassmates.  He was driving with two friends on a rock-climbing adventure in a western state, just a few weeks before he was to be married.  In the afternoon on a precipitation-free day, a car drifted from its lane on a two-lane road and hit his vehicle head on.  He was killed instantly. One of his passengers died just over a week later.

In the media report, the law enforcement officials suggest that some driver inattention on the part of the other driver might have been involved.  That driver was also hospitalized.

Driver inattention.  That two-word phrase could mean so many things.  It could mean that the driver, like me, has difficulty trying to follow the GPS on her phone to determine her travel path.  It could mean that she was texting while driving.  It could mean that she has undiagnosed narcolepsy. It could mean that she was under the influence of alcohol or some controlled substance. There are a host of possibilities for that two-word phrase “driver inattention,” but in the end, none of it really matters because so many people’s lives have been irrevocably changed by the consequences of the driver inattention, regardless of the specific kind of inattention.

A much more mundane example of how the world is too much with us is apparent in the recent presidential debates for the Democratic candidates. While these debates are arguably no different than those in the last half century, the number of candidates make the compressed intensity of the debate style more apparent. In order to narrow the field, the candidates must “take on” each other with respect to key issues.  Each candidate’s team members perform research and develop talking points based on opponents’ past policy decisions.  The television viewers watch to see which candidate gets to have a “moment” in the limelight, based on his or her delivery of a one-liner or zinger.

Seriously?

Let me make a pointed statement. I will vote for any candidate who is not Donald Trump.  But the media runs the risk of turning all of these candidates into miniature Trumps with its focus on minute- and seconds-long answers.  Whether a candidate is talking about his, her, or their policies, plans, platforms, or values, a tweet-sized thought is not substantial enough.  Candidates deserve the opportunity to articulate their ideas.  There are so many of us who just can’t live any longer in this sound-bite world that Trump has harnessed for his reign.

And finally, the obvious example of the “too much with us” world. Wordsworth is mourning the loss of the natural world: “Little we see in Nature that is ours,” he says.

The ice in Greenland is melting.  The temperatures in Europe and elsewhere have soared.  Trash floats in and chokes the earth’s bodies of water.  Every night, a different expert on a different news show explains to us that we have only ten years to alter the path that leads to the earth’s destruction.

At times, over the years, I have stopped in my tracks, often in a quiet room, and intoned Wordsworth’s words: “Great God! I’d rather be/A pagan suckled in a creed outworn….”

A pagan.  For Wordsworth, the idea is radical, his “Great God!” serving not only as an exhortation but also as an exclamation.

Regardless of what creeds we follow, we must slow down. A slower pace is imperative.

When we are driving.  When we are speaking and even arguing with others.  We must embrace the quiet in the world and linger much longer in some silent, natural moments. We must turn to others, speaking gently and with humility.  We must extend our empathy.  Above all else, empathy, respecting the dignity of others.  The dignity of humanity.

 

The World is Too Much with Us

The world is too much with us; late and soon,
Getting and spending, we lay waste our powers;
Little we see in Nature that is ours;
We have given our hearts away, a sordid boon!
This Sea that bares her bosom to the moon;
The winds that will be howling at all hours,
And are up-gathered now like sleeping flowers,
For this, for everything, we are out of tune;
It moves us not.—Great God! I’d rather be
A pagan suckled in a creed outworn;
So might I, standing on this pleasant lea,
Have glimpses that would make me less forlorn;
Have sight of Proteus rising from the sea;
Or hear old Triton blow his wreathèd horn.

William Wordsworth

 

 

 

 

 

 

 

Impromptu

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As first a student of writing and later a teacher of writing at a variety of grade levels, I have long recognized the value of writing prompts. In the beginning, I don’t believe any of my teachers used the word prompts. I initially received assignments and then maybe ideas for assignments. But sometimes those assignments or ideas were broken down into parts, steps, or processes, and somewhere along the way, in one of the many venues through which I was educated, I learned about and began to practice using invention strategies, which I now define with the more shorthand term prompts. Merriam Webster defines the noun prompt as “something that prompts: reminder.”  I like this definition because it hints at the idea of memory or remembering, which I believe is a component of most good writing.

For a brief time in the Fall of 2012, I offered weekly “Impromptu” sessions at Oakland University’s student union building as an adjunct creative writing faculty member. Merriam Webster defines the noun impromptu as “made, done or formed on or as if on the spur of the moment,” and “composed or uttered without previous preparation.”  I used the word impromptu to describe the sessions because, in part, I wanted to emphasize that writing is often done well or most honestly when we approach it obliquely – at least for those of us who like to procrastinate or suffer from the kind of avoidance that makes us cringe to hear ourselves say: “Well, now I’m going to sit down and write for three hours.” If we approach the act of writing sometimes as a little game we can play or a mere short-term commitment, often the act itself feels less foreboding.

I also like the word impromptu also because of the 1991 movie of the same name about musician Frederick Chopin and writer Georges Sand.

While writing prompts are helpful for individuals who write and like to have external ideas and forms available to shake up their thinking, writing prompts are also helpful for individuals who are trying to solve problems – not only complex analytical problems but also emotional and traumatic problems stemming from life events. Diary and journal writing has long been viewed as potentially helpful for individuals who aim to “get their frustrations out on the page,” but writing prompts also help individuals search inside themselves and find moments that are worth recalling, capturing, narrating, and reflecting upon as they are recorded on that page.

When I wrote my memoir about living and dying with cancer, I used several writing prompts along the way, especially on the days I felt most despairing about my circumstances and my state of mind. Some of the prompts were old standbys that I’d used for years, some of them were formal and published in books, and some of them came to me in an impromptu manner.

I share the prompt below with the idea that it can serve as an exercise for writers of all kinds – those seeking to create for the sake of creating and those seeking to make sense of experiences or exorcise demons.

The Tree Prompt

After my parents died somewhat unexpectedly, a few months apart, while I was pregnant with my second child, I struggled to make sense of things. A psychologist I was working with did a few sessions with me in which we worked on prompts, a practice that was fitting for me because of my life as a writer. The first prompt we did was about trees. I still have the entry in a journal. I found the exercise particularly comforting because like most people, I’d had significant trees that I remembered from my childhood, many of which had associations to my parents.

I’ve adapted and augmented that writing prompt I did myself so long ago, giving it a few layers. The result isn’t terribly complex, but the steps will help you find a topic by seeding your brain with a few preliminary questions to get you started.

  1. Take a large index card (or any other piece of paper that gives you some space). Write numbers 1-5 in descending order on the left side, leaving three lines open for each number.
  2. Examine the course of your life and think of any trees with which you have some sort of connection – the tree from a familiar yard, the tree on a path you travelled frequently by foot or by car, the unkempt apple tree down the street that everyone in your neighborhood stole apples from on Halloween to smash against some unfortunate stranger’s parked car.
  3. In as few words as possible, write down a brief way of noting each tree, just as little as you need to identify it in your brain. You don’t have to know what kind of tree it is – you just need to know how you relate to it and why it’s important to you. My few-word phrases are short – tree at the end of Sunderland house driveway, tree by the Sunderland house mailbox, trees in Rod Anderson’s yard, tree hanging over the steps at the Dalton cottage. Take about five minutes to complete this step.
  4. Next to each tree phrase you’ve listed, write one descriptive word. For example, I used the word “spreading” to describe one of my trees and “network” to describe another. Take about five minutes to complete this step.
  5. For the next step, write one emotionally charged word that is somehow related to the tree. Words I came up with for my trees were “guardian,” “empathetic,” “concealment,” and “refuge.” Take about five minutes to complete this step.
  6. Now you must make a decision. Which tree is speaking to you the most? Which do you want to write about?  What you say about the tree is going to be wide open, so you should pick the tree that you think has the most to say to you.
  7. After a few minutes, start writing. As you prepare to settle in and write for about fifteen minutes, think about the following questions:
  • Why did you pick this tree out of the five?
  • You don’t have to describe the tree, but many people do enjoy describing living things in nature, so you are certainly welcome to spend some of your time describing the tree as you remember it. If you don’t remember anything about its appearance, don’t worry.
  • Is there a person you associate with this tree in any way?
  • Is this tree a friend or foe? Since this tree has come up in this writing exercise, it may be of great comfort to you or it may be associated with a negative experience in your life. You may choose to write about either the positive or the negative. Or both.
  • Assume this tree knows everything there is to know about you. If it had one thing to say to you, one thing it could share, what would that one thing be?

Take fifteen minutes to write. Set a timer. Try to write without stopping; back in the 1980s, when Peter Elbow was the guru we educators turned to for help, this type of writing was called the “focused freewrite.” But if you need to stop because your fingers are tired or because you can’t bear to write one more second or because you have to go to the bathroom, I grant you leave to take a brief, brief break. But make sure to get your fifteen minutes in, and consider expanding that fifteen minutes to twenty, but no more.

What you have will not be a finished piece of writing, but you have produced something – an idea or a turn of phrase that you may want to keep writing about.

To add to this piece, consider these possibilities:

  • If you think you can figure out what kind of tree you selected, consider looking up the basic facts about this type of tree on Wikipedia. It can be really rewarding to name trees and learn about them, but not all people are wired to label or identify things.
  • Taking a field trip to the tree or one similar can be fun, and seeing the tree up close obviously allows for more descriptive opportunities.
  • If you are writing about yourself in a memoir or essay type of piece, fill in detail about how this tree came to you for this exercise.
  • If you write fiction, consider having one of your characters be focused on the tree, for whatever reason.

Happy Writing!

 

Living as a Tortoise in a Cheetah World

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For the most part, I am doing well these days, arguably feeling the best I’ve felt in nearly seven years with stage IV lung cancer.

Nearly seven years. And yes, my survivor’s guilt has grown considerably with each year. I wish every terminal cancer patient could have nearly seven more years.

My book Winded: A Memoir in Four Stages comes out in the fall, fulfilling the writing and publishing dream of my lifetime. I will spend twelve days with my family in Ireland in August, something I never thought possible back in 2012, when I was diagnosed.

Perhaps most exciting of all, for the first time in all of these years, I have earned permission to skip the quarterly scans and appointment I usually have with my oncologist, which means I have permission to enjoy my book launch without having the specter of bad scans — six months instead of the usual three months, and I will take that anxiety that usually builds for those three months and spread it in a thin layer over the six months as if it were a lite anxiety sandwich, so much easier to chew and swallow than the regular version.

The scans that preceded my oncologist’s permission were fabulous in their “unremarkable-ness,” unremarkable being the word that pops up frequently in radiology reports when things are going well in one’s body. Unbelievably unremarkable, and to be honest, completely unexpected. Since I required stereotactic body radiation in February of 2018 for what appeared to be a growing spot on my left lung, I was pretty sure I was on my way out of the universe; I had appreciated my five years beyond diagnosis, and it didn’t seem fair that I should have more than that. People on my drug who make it past the two-year mark often start to succumb somewhere between the five- and seven-year mark. I didn’t want to be greedy.

Yet the latest scans revealed that every spot in my lungs appears to be stable. Nearly every lab result for my blood tests falls within the normal range.

In the previous six weeks, I’d even had success with a new antibiotic to treat the daily cancer drug’s rash on my face, and for the first time in six years, my face, especially my eyebrows, revealed no external signs of the dreaded Tarceva rash. For years I’ve lived with the unpredictable pimples and the ubiquitous Frankenbrow that has transformed the follicles of hair above my eyeglass frames into two inflamed and ragged patches of hair-peppered angry skin.

In the meantime, wearing a relatively rash-free face with which to greet the world, I attended a lovely writing retreat at Interlochen, enjoying writing sessions, craft talks, and readings. I hadn’t been to the workshop in a few years, but the previous time I’d attended, I came home rejuvenated and full of energy.

This time, when I returned home, I hit a wall.

I hit a wall just like one of those cartoon characters who thwacks into a solid surface and bounces away, a goose-egg knot emerging on her forehead. I experienced the exhaustion that I’ve felt on and off over the years, the kind of exhaustion you can’t sleep through, can only roam the rooms of your house and try to shake off, like you try to shake the cobwebs in your brain each day.

I knew that the rash would come back when I cycled off the antibiotic. My new dermatologist had told me so. I used to take a different drug continuously with no breaks. I’d stopped this new drug just as I’d headed to Interlochen.

I didn’t know the rash would return with such a vengeance after I returned home. For the first time in years, I’d felt that the face I presented to the world was almost normal.

But it wasn’t just the rash that frustrated me.

Call me the naïve puppy who refuses to learn the lesson her owner is trying to teach her, keeps antagonizing the tenured family cat, keeps dragging that one kid’s favorite t-shirt out from under the bed to chew on, keeps finding ways to creep into that patch of wildflowers entwined with poison ivy.

I know better than most that the rash always returns if the drug is working. I’ve known also throughout this journey that the fatigue can be relentless at times, stemming from a combination of the Tarceva drug’s side effects, fibromyalgia, depression, and poor sleep.

I solved the sleep issue for several years by taking a sleeping pill, which seemed to provide at least nine good hours of sleep each night. But I hated the fog that sometimes resulted from the drug, and I worried that I suffered from short-term memory loss. Thus, I gave it up, making myself return to plain, unadulterated sleep. Which means that on some nights I am wide awake and move to another bedroom to do Sudoku, my strategy for emptying my brain of unwanted distractions and perseverative thoughts.

Perhaps my good fortune in the last year – my book’s publication, my recent stable scan and blood results – caused me to temporarily forget about the fatigue that has troubled me throughout my cancer journey. It’s a strange fatigue, because it isn’t relieved by naps; I used to be a religious napper before I was diagnosed with cancer. But somewhere along the way I lost the capacity for long two- or three-hour naps on weekend afternoons. My mind doesn’t often let me shut down in that way anymore.

And I suspect that one of the ways in which I’ve tried to outwit the fatigue is by simply ignoring it, charging through days, making myself do, do, and do. Yet I know that when I do anything in a public setting, I lose energy. I love people, but as an introvert, I lose energy when I am around people. It should have been no surprise to me then that while being at Interlochen for four days added fuel to my emotional and intellectual reservoir, it depleted my energy.

Still, I felt such sadness when I hit that wall and knew I would have to pull out of the universe once again and sit. Just sit.

And remind myself that I am a tortoise. That’s the other thing I keep forgetting. Not only do I deal with fatigue and exhaustion; I am also slow.

It’s not clear whether I’ve always been slow. As a kid who suffered from chronic and often acute asthma, I knew that I was slow at all things physical. Before I was given an exemption for gym class, I was the slowest runner and could never haul myself up that rope to touch the beam at the top of the gym ceiling.

But I also had early indications that while my body was slow, my mind was fast. I was a fast reader. I did math problems quickly. I remembered things faster and more accurately than many of my peers.

In my mid-forties, I began to have some indication of how my tortoise tendencies might affect my mental capacities as well as my physical ones. One summer I did test scoring for Pearson, the educational company with a finger in nearly every education pie in the country. Math tests. That summer I sat in my grading pod in front of a computer screen, grading for hours on end, quick numerical assessments of how a student solved a math problem, often related to a graph or a geometrical figure. From time to time, the pods would be assessed as to their members’ skills at grading. I scored high on accuracy. When I was normed against others, it was clear that I viewed the test answers in the same way as countless other graders did.

However, when I learned my efficiency score, I was mortified. I graded exams much more slowly than other graders. I made up for my deficits in efficiency with my accuracy, but it was clear that I was not a rock star in my grading of exams when it came to speed.

What I learned that summer about accuracy versus efficiency as it applied to my brain helped me to understand, in some fledgling way, why I could not grade student papers quickly or efficiently. Friends and colleagues gave me a bit of a pass – “But you’re so thoughtful,” they would say. “So conscientious.”

I could tell myself that, and I’d like to believe that some of that “excuse” was true. But I also believe that my brain simply took longer to go through a series of steps that involved complex skills: reading what was on the page before me, summarizing what I thought the students were getting at, analyzing how they might improve their manner of articulating their thoughts or their manner of supporting their ideas, and finally, communicating my observations to them in a concise but articulate way. Putting a grade on their efforts. (That last step for me was its own quagmire, triggering a myriad of concerns about how I might damage some student’s self-esteem or tip a depressed student’s mood into dangerous emotional territory).

When I finally let go of my teaching responsibilities, I didn’t have to think so much any more about why I was such a tortoise. At least when it came to reading, commenting on, and grading papers.

But the cancer diagnosis requires me to keep that tortoise aspect of my brain’s functioning in mind. This weekend, while writing long overdue thank you notes to friends, I wrote that I was “living like a tortoise in a cheetah world.”

A comparison between the tortoise and the hare might have been more apt, as Aesop already established it in our literary canon. Plus, there are lots of rabbits – hares – that wander through my back yard. But today’s world really is a cheetah world. The cheetah runs fast and sleek, its claws digging into the earth to give it balance. In my yoga class, our instructor Marie gives us metaphors to help us think about what to do with our bodies. I hear her say “Plant yourself! Spread those toes! Grip that mat!” With my newfound Google/Wikipedia knowledge of cheetah’s claws and balance, I want to add, “Grip that mat like a cheetah?”

Will that help me speed up?

It is time for me to accept that for whatever reason, I am a tortoise. By disposition, by virtue of the cancer, by virtue of my depression, by virtue of the many things that have weighed me down over the course of my life, slowing my pace.

I’ve finally relinquished the desire to be the cheetah. Sleek is not for me. Fast is not for me.

But I will claim those claws.

For as a tortoise, I, too, know about claws. If planting those claws, gripping the mat, clenching the earth or the rubble underneath me will deliver balance, I will gladly accept it. I will welcome the slow way in which I sometimes teeter, clawed foot in the air until I can place it down firmly, at whatever slow speed I can muster.

And then take the next step.

 

tortoise

 

 

 

 

 

Chicken Little & The Boy Who Cried Wolf

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“The sky is falling! The sky is falling!” That refrain is what I remember most from hearing the story of Chicken Little as a child. “Chicken Little” or “Henny Penny,” as she is sometimes called, is the bird who feels something drop on her head and comes to the hasty conclusion that a calamitous event is about to occur – the sky is about to break up or explode above her. For whatever reason, Chicken Little believes that the object hitting her head is a piece of the sky, and she feels compelled to alert others to the danger that she expects in the near future.

I don’t know how old Chicken Little is at the time of the incident, but because of the adjective “Little,” I think it’s fair to assume she is on the young side. Young, maybe impressionable as well. Some might even say “ditzy.” Certainly not very wise about the universe or the physical properties of the earth and the solar system.

I’ve thought about Chicken Little lately because I’ve been pondering what compels people to share their thoughts and fears with those around them. Sometimes people reveal a thought or a detail of their lives to another person; sometimes they proclaim their ideas to a group. Some people need to share frequently. But there are some people who rarely speak. It is not always clear why some people speak often and speak up and why others keep their thoughts to themselves. Beyond the issue of introversion versus extroversion, there must be key situations or circumstances which compel individuals to give voice to their ideas or worries. I wonder when it is that we are mostly likely to speak?  Beyond that wonder, I’ve also worried that I’ve been a bit too Chicken Little-ish in recent months.

The version of this story that I heard as a child left me with a three-fold impression that has developed further over time. Chicken Little’s cry constitutes the sounding of an alarm. In fact, this cry is one syllable short of the reported Paul Revere cry, “The British are coming!” The reaction I first experienced when hearing about the cry was related to the incredible harm Chicken Little appears to sense in the offing as she adopts a doomsday ethos. In simple terms, Chicken Little has a message to communicate; in. extreme terms, she has a warning to deliver.

In order to hear this message, Chicken Little’s audience must silence the static and mundane noise of everyday life and let her message ring out clear into the countryside. My second childhood observation, probably that of an older child, such as an adolescent, was rooted in the gossipy nature of Chicken Little’s message. There is a spread-like-wildfire quality to Chicken Little’s frantic delivery: HAVE YOU HEARD? The repetition of the message carries something unseemly, almost tawdry with its insistence. When I reflect on an earlier self’s observation of this aspect of Chicken Little’s warning, I experience a tinge of frustration that this chicken is a woman, at least in the version to which I was exposed as a child. And I worry that I subconsciously adopted a stereotypical view of women as the primary purveyors of gossip. I don’t like considering this possibility.

But my adult self has recognized a third aspect of Chicken Little’s message delivery that goes beyond the gossipy nature and gets at the mundane noise I mentioned above. For Chicken Little to sound the alarm, others must choose to be quiet. Or in a more sinister light, others must be silenced.

Because Chicken Little must be allowed to sound the alarm.

Like Chicken Little, the young male in the Aesop’s Fable, “The Boy Who Cried Wolf” can be viewed as a bit of an alarmist. The various versions of the fable present a range of reasons for the Boy’s lapse in judgment, but all of them tend to the frivolous. The Boy has a tedious job. He is described in some versions as “bored,” finding life “very dull.” Some versions describe his decision to raise an alarm as a “plan to amuse himself.”

When I compare the two characters, I must admit that I lay more culpability at the feet of the Boy for his lack of responsibility. His job is to watch the sheep. It’s a significant responsibility, watching the sheep. He’s been placed in charge and bears the burden of this charge, but he also has a measure of recourse. The villagers have told him that if he faces a threat from a wolf, he can call for help. He just needs to sound the alarm.

For whatever reason, he makes the decision to summon the troops and call “Wolf” when none has been sighted. Not once, but twice. When I envision the scene in which the villagers arrive after his first summons, I imagine the Boy with a sick look on his face as he realizes he’ll have to fess up. Yet most printed versions of this Aesop Fable claim that the Boy laughs when the villagers come. How can he laugh?  Laughing is so cavalier and insensitive. In addition, laughing so boldly in their faces seems rather foolish. I like to imagine an alternative version of the story in which he at least pleads to an advanced case of anxiety and says he needs to practice his summons because he wants to make sure his voice is loud enough. I want to believe that his call is prompted by fear –  that he worries about whether the villagers will come at all – whether they value him enough to put him first.

As the reader of the story, I find it even harder to imagine his face the second time the villagers arrive. They really believed him. Again. And again, he merely laughs. This time, the villagers must be both angry and disgusted, feeling more than anything else, that the silly boy does not value their time or their industry.

So we have these two alarmists, the chicken and the Boy. Why am I so interested in them?  Because I want to understand what causes them to raise their alarms, and not just what causes them to create a furor but what prompts them simply to utter their concerns in the first place. Chicken Little delivers a complete, full sentence, twice: “The sky is falling.” The boy calls out one simple word, “Wolf.”

I want to understand them and their impetus to speak, because even though I’ve lived the bulk of my life as a steadfast introvert, I’ve had those moments when I’ve sounded an alarm or talked too loudly. I cringe to use the phrase, but on occasion I’ve even “drawn attention to myself.” On one hand, as an introvert who has, in many ways, grown more introverted with my cancer diagnosis, I know how easy it is to fall silent, too weary to contribute to the conversation or too reluctant to start a story with twists and turns that get lost in the translation, lost in the world of quick news bites and tweets. On the other hand, as an individual with terminal cancer that is not currently progressing, I’ve felt an odd shame at sharing even the most minimal of details about the odd turns of my diagnosis, thinking that I should be thankful to be alive when so many others are not, and for that reason, I don’t deserve to speak.

Last fall, after a stressful series of events, my body reacted strongly to that stress with various ailments, and I became convinced that I was dying, convinced that the odd findings on my CT scans were proof that I’d finally reached that dreaded spot on my journey – the beginning of the end. I gave voice to that fear. I said aloud to several people, “I think I have started the process of dying.”

And when my quarterly oncology visit did not produce the proclamation that I expected, I felt at first the rush of relief and gratitude for being granted even more time than I’ve already had. But after that rush passed, I immediately felt shame at having voiced my fear aloud.

Really, though, haven’t I given voice to that fear over and over again in a variety of ways, since I was first diagnosed in November of 2012?

The plight of the metastatic cancer sufferers and temporary survivors who take a miracle drug to live longer is that we can never really know exactly what the true message of our health is, and feeling like imposters, we wonder how often or how loudly we should therefore share that message.

“Telling begins in an atmosphere of urgency,” the authors of Finding Your Writer’s Voice: A Guide to Creative Fiction claim. I used the book over a decade ago to teach a class, and I’m sure I embraced the quote by Thaisa Frank and Dorothy Wall because I needed to take heed of the advice for my own writing. I have learned that in my life, as in my writing, I do not often use the voice of urgency to deliver my messages, whatever they are. Yet from time to time, when I am overwhelmed by the stresses of my terminal diagnosis with its absence of end dates, I become the Chicken Little, whose world seems to be falling apart. “My sky is falling!” I cry out. “Help me, please. My sky is falling.”  Or I am the Boy. “Wolf!” I cry out. Then, again: “Wolf!”

I don’t laugh when people come running; it’s not funny, this fear of my impending death that I live with every day. And I want to make it clear that I don’t gain power from “telling” my message with any urgency. There is no power or control in this telling. My fear is just a weight that grows on my chest, and I need to push it off from time to time. To tell it.

I have other fears I live with as well, unrelated to my own life. I fear that we are living in a type of hyped-up urgency, with intense messages flying into the airwaves every day. Some of us will simply learn to speak louder, more forcefully, or more often, deeming each one of our messages to be urgent. Others will grow silent, feeling their messages unworthy of the “urgent” label, unable to decipher what it is that they most need to articulate. There is an atmosphere of urgency, yes, but how many voices can speak in this atmosphere? Whose voice will be heard? Whose will be drowned out?

Perhaps we need not speak or tell at all; perhaps we need to listen.

 

–Thanks to Christine Jason and The Hambidge Center for the Creative Arts & Sciences in Rabun Gap, Georgia, for allowing me to photograph the chicken in the photo above!

 

 

So Long, Progression-Free Survival

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It dropped.

That other shoe.

Let’s pull in a slow-motion sequence here and see if we can capture the physics of that moment – the transformation from the shoe in the air all the way to the shoe on the floor, in a series of freeze-frames.  Let’s watch it tumble and roll over, grommets flashing metallic in front of us, then hidden as the shoe rolls, flash of shoelaces whipping the air, lashing out into space.

That’s exactly how it fell.  Slow motion.  First there was the odd entry in the Michigan Medicine portal, the note written by the physician’s assistant.  My follow-up email to my oncologist, Dr. Gadgeel.  His reassuring response, and the promise of a phone call.  The subsequent phone call, an odd conversation in which two people who respect each other spoke at cross purposes.  The suggestion that we move up the date for the next set of scans.

Confirmation of a growth in those scans. A subsequent PET scan revealing growth of a nodule in the left lung.

For the first five years that I survived after the diagnosis of my stage IV lung cancer in November of 2012, I belonged to a group of cancer patients who enjoyed the privilege of progression-free survival, known in most PubMed articles as PFS.

According to the Dictionary of Cancer Terms provided by the National Cancer Institute (NCI), progression-free survival is “The length of time during and after treatment of a disease, such as cancer, that a patient lives with the disease but it does not get worse.  In a clinical trial, measuring the progression-free survival is one way to see how well a new treatment works.  Also called PFS.”

More simply, the term suggests that the treatment agent or intervention halting the growth of metastatic cancer has remained successful. The treatment has kept the cancer from progressing. The cancer is not developing, growing, or moving forward. It is progression-free. The patient’s state of survival, then, is called progression-free survival.

Since metastatic cancer is cancer that has spread from one site to one or more other sites of the body, the cancer bears the potential to progress to several areas at once.  Therefore, it’s important to note that when an individual with cancer lives in the realm of progression-free survival, the cancer has been halted in all areas of the body.  In my case, that meant in the lungs and in the bones.  The cancer was still there; a patient with stage IV lung cancer is not cancer-free or in remission. When one is in the state of progression-free survival, the cancer is present, but not progressing.

I like to describe my cancer as being in solitary confinement within my body, in whatever nooks and crannies it inhabits.  That term, “solitary confinement,” oddly enough conjures up a positive association for me – one of watching Burt Lancaster on black-and-white television with my parents as he starred in The Birdman from Alcatraz.  Sitting with them and watching the images flicker on the screen provided me with one of my earliest moments of intellectual and artistic appreciation as well as one of my first twinges of social justice.  As a result, when I think of my cancer in solitary confinement, I imagine Burt Lancaster and his birds inhabiting in miniature form all those areas of my body marked by the cancer.

I don’t remember when I learned the term “progression-free survival,” but I appreciated having a term to describe my cancer situation.  It’s difficult to describe one’s cancer to someone who may not be familiar with the disease in all its variations.  Many people think that cancer sufferers are actively undergoing chemotherapy or radiation therapy, or they are in remission.  But cancer mutations are on the rise as scientists begin to understand the mechanisms that cause cancer to grow and as researchers develop drugs to address those growth patterns.  Being in a state of progression-free survival while taking a daily, oral targeted therapy pill is not the same as being in remission, although the two states may look very similar to the beholder.

Progression-free survival for the stage IV lung cancer patient imposes a heavy psychological burden and a proliferation of quandaries when it comes to making short- and long-term decisions.  While I am ultimately quite thankful for those progression-free years, there is clearly an irony here which researchers and oncologists may or may not talk about at their conferences and conventions in between appointments at their clinics in which they counsel dying patients. For the patient, progression-free survival may mean that while the cancer is not progressing, the patient’s life may not be progressing either, particularly in the case of a stage IV diagnosis.   Cancer may have arrested the patient’s development as a human being.  The patient may be like a bug cast in amber, trapped, unfulfilled.  Preserved but immobile. Behold the progression-free patient, unable to move forward for any number of reasons but often because it’s difficult to make decisions when you don’t know what the future holds.

Well-intended individuals point out that none of us knows the future.  That statement is quite true, but stage IV cancer patients on targeted therapy know that there is not presently a cure for their disease, which will eventually progress, unless a cure is found.  And if the cancer strikes while one is still in the midst of one’s employment years, the decisions about employment alone, separate from the burdensome issue of paying for cancer treatment, can be nearly impossible to address.

At the time that I left my progression-free survival state in late November and early December of 2017, I was too busy mourning the deaths of an aunt and my brother-in-law to mourn the loss of my PFS state.  Yet certainly, the change affected me.  Not only did I have to deal with developing cancer in my lung; I lost the term progression-free survival and the handy acronym that went with it.  Some might find that second loss laughable in comparison to the first, but given that I am a person who values words and, to a lesser extent, labels, and given that I’ve struggled mightily with identity issues over the course of my life, I found it sad to let go of my trophy status.  PFS.

As fortune would have it, I quickly found a new term to embrace, a new home for my cancer situation.  While travelling with my husband on one of his business trips in the weeks following my cancer’s progression, I began Googling information about the stereotactic body radiation therapy (SBRT) I would be undergoing for the apparent growth in my left lung when I returned to Michigan. At an earlier session with the University of Michigan Hospital Radiology Department I’d been trained to breath and hold my body still.  When I returned, I would receive three treatments of 18 Grays (GY) each, three intense and powerful blasts of radiation directed at my lungs, for a total of 54 Grays.  This treatment, the literature said, worked well for individuals already undergoing targeted therapy with oral drugs, especially people whose cancer had progressed in minimal ways – oligometastatic disease.  As we drove to catch our plane on our return trip to Michigan, I said to my husband, “Hey, I’ve got this word with the prefix ‘oligo.’ The only word I know related to ‘oligo’ is ‘oligarchy’ as a form of government, but I can’t remember what it means. Remind me.”

“Government by the few,” he said. Another search of the National Cancer Institute’s Dictionary of Cancer Terms revealed a definition for “oligometastasis,” which is defined as “A type of metastasis in which cancer cells from the original (primary) tumor travel through the body and form a small number of new tumors (metastatic tumors) in one or two other parts of the body.” I had a new way to describe myself and my condition. I now had oligometastatic cancer or oligoprogressive disease. I lived in a new realm of cancer.

Now we must fast forward to February of 2019, a full year after I received SBRT for my cancer progression.  In the intervening time, I ignored this blog.  I’d lost family members.  In fact, even as I prepared to receive my radiation treatment, my mother-in-law slipped away. We mourned her.  We buried her ashes.  My husband and his surviving brothers cleaned her house.  I continued my studies in medical billing and coding.

Two women I’d met with the EGFR mutation died in those intervening months, their cancer having progressed in a manner much more ferocious than my own progression had been.

In those twelve months from February 2018 to February 2019, I had some odd scans, the radiologists’ reports noting new scarring, presumably from the radiation, and speculating on what the new observations meant.  In December of 2018, stressed and fatigued and confused about my health, I was convinced I was dying, and I was prepared to join my relatives and the women whose cancer type I shared.

But the latest scans in February granted a reprieve.  The radiologist who read the report for those scans didn’t see obvious signs of progression.  My oncologist remains convinced also that at this moment in time, my cancer is not progressing, in my lungs or in my bones. In other words, these scans reveal that even though I no longer occupy a state of progression-free survival, I seem to be progression-free within my oligo-progressive state.

If this seems confusing, I have captured the nuances perfectly.  I am confused also.

Who’s on first?

Where are we here? We have a dropped shoe, a movie allusion to Burt Lancaster and The Birdman of Alcatraz, a comparison of my cancer to time spent in solitary confinement, and an allusion to Abbott and Costello and their famous baseball word-play skit.

Disorientation reigns.

I am confused, but grateful.  In the fall of 2018, when I experienced some heavy stress, my body reacted, and I thought I was dying.  The problem with cancer is that if you have it, you are always looking for it, waiting for it to peek around the corner. Yet sometimes other non-cancerous things affect your body, changing your thyroid numbers, your labs in general, your energy level, your ability to concentrate. So how do you know what’s happening to your body? How do you read the signs?

I am determined to stay abreast of my health information, study my disease, and understand its nuances.  I believe strongly that our nearly broken medical system will be fixed only when we can train individuals to understand their health and disease and not view physicians as magicians who hold the secret elixirs that will save us.  Our health model needs to be based on shared information and collaborative decision-making.

In the very end, maybe I can’t read the signs, however determined I am to try.

My oncologist says there aren’t any studies I can look up on PubMed to help me chart the future and understand how much time I have left.  He reminds me that we zapped the supposed growth in my lung; we didn’t biopsy it first.  Perhaps it wasn’t cancerous?

I am confused, but grateful. Yet angry as well.  I keep living; other people are dying.  How do I deal with how that makes me feel?  How can I be truly grateful for some circumstance of cause and effect out of my control that has me winning the lottery while others lose? I can’t make sense of it.  I want to be like Burt Lancaster.  I want to find peace and contentment in the birds while I’m living in solitary confinement.  I want to value my time on the planet and appreciate its beauty, find a measure of design and pattern in its making.

I feel I should embrace my current status with oligoprogressive disease.

Or perhaps I should go outside the realm of cancer terms and acronyms.  Malcolm Gladwell wrote a book called Outliers which bears the subtitle, The Story of Success.  He begins the Introduction with two definitions for the term “outlier:”

“1. Something that is situated away from or classed differently from a main or related body. 2. A statistical observation that is markedly different in value from the others of the sample.”

I have not been successful in the world that places value on artistic achievements, economic prosperity, physical prowess, or extraordinary vision and acumen.  But perhaps I can claim success in this small arena: staying alive beyond statistical expectations.  It is not anything I’ve accomplished as a result of my own efforts; it is a feat that simply occurred.

Lou Costello finds enlightenment as he nears the end of the baseball monologue “Who’s on First.” He figures Bud Abbott’s patter out; he understands the names and positions of the players.  He is no longer a dupe, frustrated and confused. He has achieved success.

I want to understand my disease and its progression, but perhaps as an “outlier,” I can claim only success, not understanding.

Outlier.

 

Alchemy

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I took two years of chemistry in high school and another semester in college, yet I don’t remember specifically learning about the concept of alchemy until I was much older. Like many pieces of information stored away in my brain, this concept has been married with a visual image because of various reading experiences I’ve had. The image, not surprisingly, is that of a crucible.  Not Arthur Miller’s, but a simple vessel.  And a flame.  For me, alchemy relates to transformation with a touch of magic thrown in – white magic or dark magic or maybe even gray magic – because we don’t know who practices the magic.  In my dance with cancer, alchemy is a process that takes place regularly in my body, whether I am aware of it or not.

When my children were younger, we had a picture book floating around the house called The Toy Brother by William Steig. We had many children’s books floating around the house – some we purchased for the kids, some the kids ordered from Scholastic flyers once they were in school, books they got from the public library and the elementary school library.  Books their grandma gave them, books from a monthly book club their uncle enrolled them in. The Toy Brother must have been one of the latter.  I liked William Steig as a cartoonist and a children’s author, but it would not have occurred to me to buy a book about alchemy (and this book came out several years before Steig’s Shrek became a household word after the movie was released). Yet there it was, floating between the bedrooms, between bookshelves.  Set in medieval times, the book addresses the story of a young alchemist-in-training, Yorick, who illicitly conducts experiments with his father’s potions in the lab while his parents are away, shrinking himself into a very small person.  To negotiate the world in the days before his parents return from their week-long trip, Yorick must rely on his younger brother Charles, whose intelligence and skill level he has not always valued.

I remember being a bit mystified by the medieval setting for the book’s story, although once my children began their elementary school classes and teachers talked about picture books in relation to stories that presented problems and offered solutions, I began to see how the world of alchemy could provide a vehicle for a story about family and acceptance, about sibling rivalry and role reversal, giving children the charm of the magical and unexpected, not unlike a Mickey Mouse Sorcerer’s Apprentice tale in Fantasia or the equivalent of body transformation in Disney’s Honey, I Shrunk the Kids.

 

In the spring of my junior year in high school, Mr. Johnson, my fearless leader for two years of chemistry, gave us the rules and procedures for our “Unknowns” project.  We would receive two substances to identify, and the process of identifying both would provide a major grade for the semester.  We would deal with one at a time, starting with a series of lab procedures that would help us narrow down the possibilities.  At any point, we could make a guess, but that option of making a guess came at a cost.  We only had two guesses per unknown substance. If we were wrong with our first guess, a “C” was the highest grade for which we could qualify for that substance determination.  If we were wrong with our second guess, we would earn an “F” for that substance and would move on to the next one.  Those of us who protected our 4.0 grade averages with a mixture of intellect and fret moved slowly and carefully through the rule-out laboratory tests, squelching any impulsive guesses.

All of Mr. Johnson’s 11th grade chemistry classes were going through the same process. But early in that process, we came to class one day to find a substitute teacher who broke the news that Mr. Johnson had suffered a heart attack and was hospitalized.  Though we all loved and revered him, it was a well-known fact that he occasionally smoked in the storage room of chemicals behind his classroom. Probably none of us knew back then that smoking lead to heart disease.  My sisters and I had harped at our mother for smoking for years, but we focused on the specter of cancer, not heart disease.

I don’t remember the name of that substitute teacher who took Mr. Johnson’s place while he was in the hospital.  We were all glad he’d survived, and several of us went up to visit him, avoiding the subject of cigarettes and his heart, focusing instead on our unknowns.  He was sober about his health but almost gleeful in revealing that he’d been working closely with the substitute, and the “Unknowns” project would go on without him.

The substitute ended up having a much softer touch than Mr. Johnson, and when I guessed wrong on my first try for one of my substances, she found a way to provide a few hints, not an answer, to lead me in the direction of which tests I might perform next so that I could avoid the consequences of two wrong guesses: an F for that substance.

I’m not sure what final grade I earned for the project; I believe I scored a “C,” doing well on one substance and bombing on the other.  But I felt pride that I’d been a scientist during those weeks – that Mr. Johnson from afar and the compassionate sub who replaced him helped us to explore the glory, tedium, and capriciousness of the unknown, in all its power.

My relationship with chemistry ended a few years later.  Although I’d taken Advanced Placement Chemistry during my senior year and thought hard about going into science, the small creative writing scholarship I received from the English Department at Michigan State University required me to declare an English major.  I entertained the idea of a double major but found the prerequisite chemistry class I took during my freshman year hopelessly boring and confusing with no Mr. Johnson at the helm using trademark humor to enliven discussions of electron configurations, my least favorite aspect of chemistry; I was much more engaged in my English classes. Yet when I took the 1-credit lab class that accompanied the intro chemistry lecture, I became temporarily entranced again by the process of exploration, confident in my skills of recording and framing data, largely because of my high school experience.

 

Those who happen to give thought to alchemy might view it as a search for a process or substance to turn another substance or element into gold (the pursuit of wealth) or the search for an elixir or substance to provide eternal life (the search for immortality).  Another version of alchemy presents the search for an element that is basic to all matter. I read Honoré de Balzac’s novel The Quest of the Absolute for an independent study project with my European history professor when I was a senior in college. I was perplexed by the main character, Balthazar, a man who allows his family to fall into a life of ruin because of his obsession with searching for the absolute element. His quest, a mission borne out of what appears to be a combination of genius and mania, represents a pursuit of scientific research at the expense of personal life.  When I see the word “quest” and think of a quest fueled by passion and obsession, it is hard not to slip in the adjective “heroic” to modify “quest.”  Yet are all alchemy quests automatically heroic?  Balthazar’s quest uses scientific methods, methods which issue from the world of reason.  Yet I think that I, the reader of the novel, had and still have some prejudice in favor of science.  We do not know that the purpose behind Balthazar’s questing is heroic or even altruistic.  Yet I, lover of literature and science, have somehow made an association in my brain; scientific questing is noble.  Alchemy is noble, regardless of the results.

A few years after I received my undergraduate degree, I would finally have a chance to read Sinclair Lewis’s Arrowsmith, a Pulitzer-prize winning novel which came to my mind the first time I read The Toy Brother with my children and again years later when my friend Marie and her husband bought me a copy of The Emperor of all Maladies: A Biography of Cancer, Siddhartha Mukherjee’s book on cancer, and we talked about Arrowsmith.  While much of medieval alchemy may have been about turning substances into gold, one of the branches of chemistry and scientific research that evolved from alchemy centered on the search for cures for well-known diseases.  Lewis’s 20th century hero pursues a quest that can certainly be described as “meaningful,” “noble,” “purposeful,” and “heroic” in conventional terms.  Martin Arrowsmith, Sinclair Lewis’s protagonist, spends a career deeply rooted in the worlds of scientific research and medicine, two intertwined worlds that become, for him, and many other as well, full of contradiction and tension, neither world giving him the satisfaction he desires.  When he watches his wife die from the plague, a disease whose cure is almost in his wheelhouse, he sees the opposition at play between a world of pure research in which controls must be established and observed and a world of humanitarian medicine in which all patients have access to the cure, regardless of circumstance.

These writers – William Steig, Honoré de Balzac, and Sinclair Lewis – have brought this concept of alchemy into the present day for me, collapsing the time that has passed since I read their works, making the transformative nature of cancer and cancer-fighting agents a reality.

My body has become the crucible that carries and harbors the unknown.  I don’t have the kind of long-term history of hospitalization or compromised health that would allow me to speak from experience, but I have had enough health experiences – from asthma as a child and adolescent, to long-term chronic depression, to four pregnancies, one ending in miscarriage, to my parents’ failing health and eventual deaths in their sixties — to know that what happens in the body is NOT predictable and invariably involves a great deal of alchemy, whether in the manifestation of disease or in the course of treatment.

The makers of the drug that I take for my stage IV lung cancer have been involved in this process of alchemy.  Erlotinib, the drug more commercially recognized as Tarceva, gives hope to thousands of lung cancer patients each year.  It offers extended life to approximately 15% of individuals whose cancer has the epidermal growth factor receptor (EGFR) mutation.  Scientists and lab researchers have isolated the genetic markers within the cohort of EGFR mutants that make one person more likely to respond to the drug than another.  Yet no one has been able to determine why one individual’s lung cancer can be “controlled” for five years without progression, while another’s cancer thwarts the drug’s action.

All drug companies are involved in this process of alchemy, and as much as each step of research is qualified and quantified through multiple trials and studies and eventual FDA approvals, with documented science about the cell’s reaction to the drug – it’s still not that much different from the medieval alchemy in William Steig’s The Toy Brother.  Yorick has been shrunk.  What do we do?

We have potions, but once they enter the body, they become part of that other branch of science – biology – and the chemicals transform the cells, and the cells transform the chemicals and something magical – sometimes awful, sometimes seemingly miraculous and good – happens.  Regardless of the outcome, a bit of magic has been involved, magic we’ll never know or understand.

It is good that the researchers work so hard to bring their drugs to the public.  It is good that the oncologists fight so hard to save those who have the disease. Yet the lines between research and marketing and profit-turning and life-saving become blurred. Are all of these quests noble?  For now, at least, there are unknowns.

I try to understand.  I get lost in the maze of PUBMED articles and the clinical trials on government websites, but I try to make sense of it all.  I understand the EGFR mutation, and the EXON deletions, and the role of erlotinib (Tarceva) as a tyrosine kinase inhibiter.  But beyond that, the world inside my body becomes murky, even as I read articles co-authored by my oncologist, Shirish Gadgeel, on MET/HGF pathway activation as a paradigm of resistance to targeted therapies.

I view the doctors and the drug makers as alchemists, and to be honest, I worry that I relinquish too much control to them as transformers.  I see them as the agents of change.  My body the crucible of transformation.  It happens, there inside me, whether the cancer is growing or dying off, the Tarceva beating it down.  Action occurring.

But what is my role in this activity? I cannot be passive and merely observe.

I am thankful for all of the alchemy that takes place as my cancer is kept at bay.  But there are times when I fear the unknown that is happening in my body in the same way I might have feared the “C” or the “F” in those days of the “Unknowns” project, when we all had to search for the answer to our mysteries.

I want to be able to embrace my fear and transform it.

I want to wrest the test tube and the Bunsen burner from the doctors and researchers and lead the transformation myself.

If only to feel one last surge of power before I die.

The Other Shoe

Shoe

I have lung cancer.  Stage IV, non-small cell lung cancer, also known as NSCLC.  When I was diagnosed in November of 2012, the first oncologist I met with told me that I had six to eighteen months to live.  The PET scan on the computer screen in his office indicated the spots where the cancer had melded into my bones.  The tumors in my lungs weren’t so obvious – they occupied a murky haze left over from the pleural and pericardial effusion I’d suffered the previous month.

But the biopsy results clearly revealed lung cancer.

Before I go any further, I need to warn you that today’s edition is not a story of my fight or battle for survival.

Rather, it’s an admission: for five years, I’ve been alive, waiting for the other shoe to drop.

Worse yet: sometimes I wish I could hand those five years off to someone else and get on with the business of dying.

Do I jinx myself by putting that thought into print?

“Jinx” is not a typical word in my vocabulary, though it does bring to mind distinct memories of my children watching Scooby Doo, a cartoon I’d viewed as a child. “Jinkies,” Velma says.

“Waiting for the other shoe to drop” is an idiom, it turns out, related to living in New York City.  Sources suggest that the expression dates back to the end of the nineteenth century and early twentieth century.  As manufacturing grew, inexpensive housing for workers did as well.  Apartment dwellers could hear the movements of their neighbors above and below them.  A thud recognizable as a removed shoe generally would be followed by another thud coming from the other shoe.

Some definitions for the idiom refer to the idea of inevitability related to the dropping of the second shoe.  Others imply a sort of dread related to the dropping as the definition has morphed from conveying the inevitable to the inexorable. I can’t help but think of Thomas Hardy novels I read in my college days, when I first learned about Hardy’s brand of stoicism and fatalism.

Currently, no known cure exists for stage IV lung cancer, although some people do somehow become cured, which accounts for the small percentage of survivors listed on websites.  Oncologists and researchers measure “progression-free survival,” and I want to emphasis that I find it entirely admirable that oncologists’ lives are devoted to seeking the longest “progression-free survival” they can conjure for their patients, despite my frustration with the term.

I learned shortly after I was diagnosed that my cancer had a specific mutation – the epidermal growth factor receptor (EGFR) mutation for which a drug was developed in the early decade of the new millennium.  A pill.  The pill has different versions, or iterations, if you want to use technological terminology.  My version is erlotinib, known in the commercial world of specialty pharmacies as Tarceva.

I take a 100-milligram tablet of Tarceva each morning and have done so for over five years now.

The drug does not provide a cure.  Instead, it must be taken daily to keep the cancer “controlled.”  Not “in remission.” The term “in remission” suggests that cancer is gone.  Cancer controlled by Tarceva isn’t gone; it is in what I call “solitary confinement.”  Wherever it is lurking in the body in addition to the lungs for the lung cancer patient with metastases – the bones, the liver, the brain – it will remain.  But it can be radically reduced and actually appear to disappear.

Like magic, almost.

Except at some point the drug will stop working.  No one can predict when that will happen.  Fifteen percent of individuals who have the EGFR mutation and take Tarceva will live five years or longer.  It is not completely clear what “or longer” means.

And then there is the other eighty-five percent.

In the beginning, the concept was a little challenging for me to explain to people with whom I shared my personal health information.  These days, I don’t need to explain much at all.  I can point to recent television commercials.  Opdivo was the first drug that caught my eye on the commercials. A cityscape with first the sidewalks and then a tall building emblazoned with the phrase, “A CHANCE TO LIVE LONGER,” while pedestrian onlookers stare in wonder. Then the commercials for Keytruda showed up.  A woman preparing for what looks like a family portrait or a photo shoot of some kind.  In another rendition a woman getting up and going about her day, talking about her longer life and the new normal.

In the privacy of my family room, I make fun of these commercials, but please understand that I do not intend to make fun of cancer patients themselves or their situations.  I’m making fun of the Madison Avenue version of what it means to “live longer.”  The implication of the happy moments you’ll have.  All the energy you’ll possess to keep going in your regular life while you deal with your cancer.  Light-filled shots of the clean, clutter-free home you’ll be living in.

I’ve watched the commercials proliferate in the last year or so, watched them from my family room, where the floor is covered with my dog Clover’s fine white hairs, in spite of my husband’s efforts to keep them vacuumed up.  The couch and the chair, purchased at Art Van when we first moved into this house in 2002, are both threadbare, the perfect mixture of nubby and pilled to pick up dog hair, especially when one member of the two-member household allows the dog to climb onto the furniture in this room and the other does not.

The paneled walls need a serious dusting and cleaning.  The window looking out into the back yard needs some curtains.  (Disclaimer: the lack of curtains existed before the cancer.) Underneath the window, the paneling is stained with water damage when the eavestroughs dumped their overflow in recent years and it poured back into the ailing window. I have been out of work since 2015, a year after I was diagnosed with the disease, and have been unable to contribute much to the family budget.

It is hard to keep the room or the house clean.  Some days I have no energy, and until I shipped my youngest child off to college in the fall, I expended whatever energy and money I had on him and his older siblings, who are making their way in the world in large cities where they might occasionally hear one or more shoes drop.

I cannot express how happy I am that I have “lived longer.”  I have, in fact, had more Madison Avenue airbrushed moments with my family members than I ever could have imagined possible back in those dim days of December 2012.  I have immense gratitude for each of these moments: the graduations, the performances, the sessions playing “Cards Against Humanity,” and the family jokes about how I see striking similarities between my youngest son’s face and that of Barack Obama, my most favored president of my lifetime, because if I wanted to have anyone’s love child outside of marriage it would be his.

Shared understanding of our dog, Clover, and her submissive peeing practices.  The timbres of my children’s voices calling through the house, those timbres maturing over time, my constant “Pardon?” an annoying refrain because I need a hearing aid and it seems imprudent to spend money on one when it could go to waste sooner than I think it might.

That’s where the other shoe thing comes in again.  Once you have been diagnosed with cancer that doesn’t have a cure, you are always waiting.  “Live your life!” my oncologist told me a few years back, when I’d made it through the first few years, defying the initial Tarceva statistics. It is sound advice, it really is, but you can’t always erase those thoughts about your future and its truncation.  And if your family budget created at another time in your life assumed that you’d be bringing money in the door for your children’s college education, you can’t easily forgive yourself for not bringing that money in.

But if you have lived longer than most people in your situation – on your drug – have lived instead of died, you feel guilty for even uttering a complaint.  You have been given the gift of life.  So many others have died, so soon, so young, so tragically, from this horrible disease.

A tension arises then, between this waiting for the other shoe to drop and this guilt. Your driveway is crumbling and it will cost $8000 to fix.

But you’re alive!  Those other people didn’t make it.

Your basement is water damaged, a hole suddenly appearing in the foundation, letting in a pile of sand and dirt, which your husband had to vacuum, mop, dig up.

But you’re alive!

Your face is covered with the infamous Tarceva rash, and now, after five years, the “eyebrow thing,” another Tarceva side effect, drives you insane every day. Ingrown hairs.  Pustules.  Neutrophils.  Sometimes your eyebrows just ache with the breakouts and the skin healing and shedding.

But you’re alive!  You should be thankful.  You are one of the lucky ones!

(And don’t ever forget it!)

A sinister voice makes this last statement.  You try not to read into it.  But you do.  And you’re overwhelmed with guilt. You feel guilty for the dead who didn’t have your opportunity.

You need to maintain each day two separate “to do” lists – one for living and one for dying.

And some small part of you is even a little bit angry that you are no longer part of the cohort of people who get to talk about their retirement plans and their children’s weddings and their grandchildren, yet you feel you must keep your complaints to a bare minimum because you are one of the lucky ones.

You hate yourself – no, I’ll take ownership: I hate myself for each day I’m not happy to be alive.

And I hate myself for the weight I hang around the necks of others.

I long to be able to just appreciate every moment I’m given, without guilt, without regret, without resentment.

When my husband Tim and I were first married and living in Charlottesville, Virginia, he took a job as a sheet metal worker for a company working on an expansion of the University of Virginia hospital.  He’d taken a break from a PhD program in American history to figure out what he really wanted from an advanced academic degree. Each day he came home from a long day of hot, dusty work, telling stories of the men with whom he spent his time.  Since he’d worked at his father’s roofing company through college and afterward, he was no stranger to physical labor.

He was assigned to assist an older union worker named Bob.  The two of them labored side by side on projects, ate lunch, and took breaks together. Bob finally admitted that he was working in his advanced years to pay off the medical bills his wife had incurred before she’d died a few years earlier of cancer.

In the past five years, I’ve thought quite a bit about the man who toiled under the hot Virginia sun to pay off old bills. My husband’s employer provides excellent health insurance, for which I am thankful.  But we have other bills.  When I recently established a new repayment plan for the student loans we’d undertaken for our older two children, I realized that my husband might be paying off that debt himself until 2041.  I thought of Bob again, wondering how he distracted himself from the seeming futility of earning into the past instead of the future. I wondered if he ever wished his wife had died earlier.

When I think of those days – the hope and promise that colored our new marriage and the future, however much in turmoil we may have been about our careers at the time – I have an ache for an old life in which shoes came in pairs, always together, and I wasn’t waiting and measuring the sin of my lack of appreciation.

I force myself to remember, too, the empathy we felt for him – Bob with his work ethic, his unpaid bills, his loneliness.  And I try to hollow out within myself a place where that empathy can take hold, so that I can give a little to my own soul as I offer it to others, so many of us waiting for and dreading that soft thud.