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

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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.

Escape Room

You’ve stepped into the room, taking note of the strange squiggled pattern on the worn linoleum floor underneath your tennis shoes.  Behind you the key scrabbles in the lock, and the deadbolt clicks into place.  You’re alone, you don’t have much time, and you need to figure out a solution to the problem.

The room lacks windows, so the air already feels stuffy, and you’re a bit lightheaded, trying to remember your task.

Focus.

Focus.

The scent of mint overwhelms. Three kinds of mint all at once: leaf mint, fresh, picked from an old babysitter’s garden; chewed peppermint gum spit out underneath the bleachers of a school gym; blue mouthwash next to the sink for gargling.

If this were an escape room, friends would surround you, each of you would have paid upwards of thirty dollars for admission, and all of you would work together as a team to find the solution. People go to escape rooms for adventures.  The task, the locked room, the limited time in which to find a solution – these things contribute to adventure, the sense of an urgent mission, the development of community. If this were an escape room, you’d bounce ideas back and forth with your companions, like castaways on Gilligan’s Island, except without the lame jokes, the stereotypes, the slapstick comedy, because this is not funny business here in this room.

You would try to find clues, and if you got desperate enough, you’d ask your captors to release a clue, just one.

But for you, this room is different. You’re embarking on your own personal mission to find the urgency in your life.  In your days.  In your moments.  And then express that urgency aloud.  You know it’s there, the urgency, but the way your brain works, you find it difficult to isolate the urgent; you tend to give things equal value. Events, problems, simple tasks, conversations, objects, memories, worries, associations.  All merge together into one big bolus of thought in your brain. Thus, a recipe for black bean and ham soup is equivalent to a conversation you might have with the soloist after your brother-in-law’s funeral service.  Not in terms of the importance the events hold in your heart, of course – their meaning to you and the way they affect you. But the expressing of them as issues requiring reckoning, in any order of priority.

And the utterance.  The utterance has become so complicated, in part, because of the nature of your non-linear brain but also because of the complexity of the associations. If you could just prioritize these things in terms of their importance, and then utter them, one at a time.

Utter them.  One at a time.

Your cousin Fred, trained as a journalist, unknowingly provided a clue. “You buried the lead,” he said.  You called him again after leaving a cryptic message on his cell, not quite proclaiming but implying the death of your shared ninety-five-year-old aunt. You could have just said it.  You’d prepared him for the possibility the week before. Instead, you trailed off at the end of the message, unwilling to state the facts.

His first editor had urged him early on not to bury the lead.  But you weren’t trained as a journalist, you told him. Argued into the phone in the back yard while you watched your dog roam, looking for a 5:00 p.m. pooping spot. Told him that it wasn’t necessary to lead with drama.  And really, wasn’t that what the Trump era was all about with the tweets and the snake-poking?  We don’t need more drama, you told your cousin.  Why lead with drama?

Yet you knew he was right, and he’d hit on a truth he wasn’t even looking to claim. You always buried the lead.  Took the non-dramatic option.

The subtle.

You didn’t even realize how much you buried the lead in your daily life.

Which is why you need the room.  To sift through those thoughts in your head in a confined space, on a timetable, to find the one rising to the surface, bubbling up. The one that needs uttering more than any other at that moment, even if it was messy, that thought or explanation or occurrence, messy like all that grease you tried for years to skim off the turkey gravy, even sopping it with a paper towel, watching the oil become absorbed by the layers of the paper product.

You’re tired. But you have some things to say.

About living. And dying. And urgency.

You need to figure out what to say because you’re alone, you didn’t pay the price of admission for this adventure, and no one is going to come back and open that door until those first few words tumble out of your mouth.