Dawn Newton is a Michigan-based author and former English professor. Her new book Winded details her struggle with cancer.
Q: This book is a memoir. What was it like to reflect on such difficult aspects of your past and present? Was writing this memoir at all a therapeutic process?
A: On one hand, it is always difficult to reflect on difficult aspects of one’s life. On the other hand, my temperament is to do exactly that sort of reflection every day. I’ve always been reflective, ruminative, brooding, even, though I tend to hide the brooding part from the external world; I wear a smile on my face almost constantly, something I inherited from my mother. There is a difference, however, between letting thoughts roll around in your head and committing them to paper. As a writer, I have more practice with that, but since I usually write fiction, it has been a bit alarming to write things down in this memoir and then think, “Oh, gee, if someone reads this, have I phrased what I wanted to say in the best possible terms?” There is an accountability and a sense of concern about hurting people’s feelings with the recollections.
Chief among those that I worry about are my children and my husband. This cancer journey has been challenging in many ways, and not surprisingly, dealing with family members is sometimes difficult in ways I least expected. We are quite close but quite honest with one another sometimes. Yet we don’t often carry that honesty out the door and share it with others. I have done that here, and I hope I haven’t offended them. My husband has read the entire book. My youngest has read and edited every essay, save two; only one essay in the book makes him squeamish. My daughter doesn’t usually like to be teased and yet she pretty much agreed to be a comedic foil for me in some of these essays/chapters; I thank her for that. My middle son’s temperament is like my own, and he’s read most of the pieces here; I hope he doesn’t get offended by anything or feel that I’ve revealed too much about him. But he writes about me sometimes in very shaded fictional concoctions, so I think we have a mutual understanding.
And yes, writing the memoir was incredibly therapeutic. I am generally quite introverted; I become an extrovert only when I’m teaching or when I’m interacting within an educational setting. The memoir form gave me an opportunity to complain, whine, lament, whatever you want to call it. I worry about that. Did I whine too much? I don’t know. I think I’ve learned that in general I don’t complain enough daily, although my family members can confirm that perhaps I need to do more daily because sometimes I save it up, and then all that complaining comes out in a big whoosh of intensity, usually when I feel misunderstood.
Q: How long did it take you to write this book and what challenges did you face along the way?
A: I began journaling in January of 2013, just a few months after my diagnosis in November of 2012. At that point, the book had no form or shape–I was recording my feelings for emotional and psychological reasons, although as a lifelong writer, I think about shaping my thoughts into books all the time. At that point in time, however, I really wasn’t sure how much longer I would be alive. I had a strong image in my head of a scene from the Natalie Wood and Christopher Walken movie Brainstorm. In that movie, one of the researchers who is developing this futuristic mind device, an older woman researcher who is both a work-a-holic and a heavy smoker, experiences the first twinges of a heart attack while at work one day. No one else is present, so she’s clearly in a situation of peril with no one to help her. As the movie viewer watches the film, it becomes apparent what her thinking is–if she is going to die, she’s going to at least record the experience on this mind device she’s been working on with her colleagues. She connects herself up to the machine so that it can record what’s going on in her body while she’s dying. That was my original thought as I began journaling: If I am going to die, I need to start recording it.
You may notice that I’ve avoided answering the question of how long it took. At some point after I got back from Hambidge, once I’d lived three years with cancer, I said, “Okay. This is it. Three years. I’ve been lucky, and I’m doing well. I’ll end the book after three years.” My psychologist asked me how I knew that was the place to stop, and I told him I’d felt so fortunate after I got back from Hambidge that it felt like the book needed to end there. Therefore, it’s probably key to note that the book only covers a portion of my cancer journey, although in one of the last pieces/essays I use some flashforwards to cover some of the events of the years between 2015 and the present day.
But of course, once I decided on the book’s time frame, it took me another couple of years to pull things together. I’d say 2016 or 2017. Yet because of the target on my back, I started sending it to places when I had a beginning, a middle, and an ending. Even hours before I submitted my “final copy” to the publisher, I finished up two essays that had been hanging out in an unfinished state in my files (which really means on the floor of my daughter’s old bedroom that I converted to an office, keeping some of my daughter’s things to provide comfort). When you have a date with death in your near future, you don’t always take the conventional approach.
When you ask about challenges, one of the challenges, I think was to answer the question, “Did you write this book to get published or primarily for the therapeutic 3value.” I think the answer was in some ways easy for me; I’d always wanted to publish a book, and my other efforts hadn’t met that goal. I also had this weird sick idea that some writers get about making money for my children. But another big challenge was determining how to publish it. The world of agents has changed since the last time I shopped around for one. They don’t answer queries much of the time. And a few people who requested the manuscript simply didn’t ever get back to me. I decided that since agents are essentially good, well-intentioned human beings, they found it painful to reject the cancer memoir because they didn’t want to disappoint the person. My old agent, for whom I never generated a dime, was one of the exceptions; she got back to me in a timely fashion and said she wasn’t sure she could sell it. I appreciated her honesty. Another agent along the way responded with a similar message. I was happy for those two answers instead of silence.
I realized then what I’d known all along; I’m really as mall press writer. I write literary fiction or non-fiction focused on characters and a certain amount of lyricism in the prose. I don’t write with the kind of urgency, plot, or drama that characterizes mainstream or commercial writing.
Q: How did you make decisions related to the structure of the memoir and its various pieces?
A: As I began to live longer, I continued with my typical approach to writing–I studied the concept of memoir. I was trained as a fiction writer. Although I’d written essays in high school–I think I have a few scholastic writing awards I received back then–and as an English major in college, I was devoted to fiction. The idea of writing memoir–something that was supposed to be true or not fiction–was frightening to me. The biggest challenge that I faced was in writing scenes with dialogue. I’d heard all the controversy around the James Frey book, and I myself had wondered–how do these memoirists remember conversations from their pasts and transcribe them word-for-word?
I learned from several sources that most people find a level of comfort from which they can write. If they can remember the date of a conversation and events around it, they will fill in dialogue and capture the spirit of whatever conversations they had. Still, I really struggled with it, and as a result, I don’t have that many “active” scenes in which characters’ exchanges are captured indirect dialogue.
I’d attended a conference at Bear River Writers and heard a speaker talk about the difference between memoir and biography. Rhoda Jansen, who wrote Mennonite in a Black Dress. She explained that memoir is often about a limited period in one’s life, while biography often spans a larger period. Her presentation really made me think about what time period I wanted to address with the book.
The following year I took a memoir workshop with Anne-Marie Oomen at Interlochen, which made me think about a lot of other issues related to memoir. I’d gotten an essay from the book published in the literary journal1966, and they asked contributors to consider writing a blog. I wrote a blog entitled “Sashaying from Fiction to Non-Fiction.” In that piece, I described how I got one of my structure concepts from writer Anne-Marie Oomen. Anne-Marie kept using the word “envelope” to describe the concept of structure and the choices you make about what to include in your longer work. I had a few writers’ residencies along the way, one at Kimmel Harding Nelson in Nebraska, where I really started to look at what the nature of my envelope might be, but the one that really solidified the structure for me was a residency at the Hambidge Center in Rabun Gap, Georgia. At Hambidge, they let you use the walls to do your thinking, and I created this schematic for my book during my time there. I still have this photo I took, and I was using materials I had brought with me, so I used four business envelopes from my supply to create a picture of my structure, and then I wrote to Anne-Marie and thanked her forgiving me the word “envelope.”
Q: Can you tell us a little more about your diagnosis?
A: I was diagnosed in November 2012 with stage IV non-small cell lung cancer, which is abbreviated as NSCLC. At the time, I was given six to eighteen months to live, pending the results of a test for cancer mutations. When the results of that test came in, I learned that I had the EGFR mutation, which is one of several mutations that can be treated by an oral drug. The oral drug is referred to as “targeted therapy.” The drug does not provide a cure. It gives people more time. If you are stage IV, your cancer has already metastasized. At the time of my diagnosis, I was shown a picture of my PET scan, a scan in which the areas of cancer light up. I had metastases in my hip, my spine, and my arm, so the cancer had spread outside of my lungs. The statistic my oncologist gave to me, once my EGFR mutation was confirmed, is that 10 to 15 percent of individuals taking Tarceva lived five years or longer.
In November of 2017, I celebrated five years on Tarceva. The piece of information that I think I would like to emphasize for people who don’t know a great deal about this kind of cancer diagnosis and its treatment is that the “miracle drug” many of us take is not a cure, so my cancer never goes into remission. I, and others who suffer from this disease, still must take the incredibly expensive pills every day. If we stop taking them, the cancer will spread again. In addition to taking the pills, our bodies need to continue to sustain 5the considerable side effects of the drug. And despite all the work and the effort, eventually, the drug will stop working.
Q: In your memoir you talk about the phrase “living longer” and how it does not always mean the Madison Ave version we see in medication commercials. What do you think is problematic about these Madison Avenue depictions?
A: First, I will admit to being snarky about those commercials, and I want to step away from that snarkiness and say that “living longer” truly is a gift in so many ways, and if I can keep myself focusing on the benefits eighty percent of the time, I’m doing well. But I think the origins of my snarkiness are important. I was really struggling during the Great Recession to find viable employment that would allow me to contribute to the family income but wouldn’t wipe me out. I became quite cynical about how the world and society treated older women seeking employment. I worked for a year and a half after my diagnosis, and I found that cancer was kind of like depression–I just couldn’t juggle it, my work, and my kids, nor could I perform at the level at which desired. And I knew or thought that I didn’t have much to lose by leaving my last teaching position–I had a low salary, no retirement, no medical benefits, and a long commute. I would miss my students and the chance to talk about literature and writing every day of the week, but I was pretty sure I would die soon, so there didn’t seem to be a point.
Then, of course, I did what the commercials advertise. I lived longer. The commercials started up a few years later, and my first thought upon seeing them was, “Oh, if my life had been really settled and together when I got the cancer, “living longer” would be great. But I’m too tired to add the task of living longer to my to-do list.
And cancer is incredibly expensive. It bankrupts people. One of the early posts on my blog is about a guy my husband worked with years ago who was working late in life just to pay off his dead wife’s cancer care bills. There are programs that help you get the medicine you need, if you’re on my drug or one of the drugs advertised in the commercials, but if you have a low income and no insurance, the sheer volume of bureaucratic documents you’d have to march through to get treatment would be a full-time job. I have the luxury of my husband’s great health insurance, for which I’m thankful, but I hate it as well because not everyone has it. What have I done to deserve this health care coverage? Why do I get better care than Jane Doe, who has a similar diagnosis but no health insurance? That’s where some of my frustration with the “living longer” commercials comes from.
Q: Can you tell us what the phrase “living longer” means to you in your daily personal life?
A: When I’m NOT being snarky, and when I’m speaking for myself alone, I can say that living longer, while it fills me with guilt and uncertainty and frustration and just plain exhaustion sometimes, means that I get more moments. Mindfulness breathing and psychotherapy has helped me to appreciate the moments, especially the ones with family, and I have appreciated that so much. What’s nice, too, is that as an introvert, I haven’t always been one to take the stage in my family environment and insert myself into things; I watch and absorb quite a bit. But with my diagnosis, I ask for more. So last summer, when my immediate family gathered in Brooklyn to explore New York and my middle son’s new living environment, I said to the family–“Hey, I need us to put together this model windmill I bought a few years ago in Nebraska.” And they humored me. They worked together with all these metal pieces and tiny little screws. It was so rewarding to see their personalities and their problem-solving skills come out. Now I’m bugging them to play Euchre with me, because it was something I learned from my parents and some cousins, and it’s a pretty Midwestern game. They all know how, it turns out, but for some reason, we’ve never played the game together.
The down side of living longer is the to-do lists. You must maintain to-do lists for both living and dying. Your work is always cut out for you.
Q: Could you tell us more about your Certificate of Medical Insurance Billing and Coding and why you decided to get it? You clearly place a high value one education, was this a part of that mission?
A: As I look back, there are many reasons I decided to get the certificate. Once I was diagnosed and started living longer than I expected, I was very focused on earning money to help pay off the parent plus loans my husband and I took out for our kids’ education. I knew from my experiences cobbling together jobs in the Great Recession that I hadn’t had much success as an older woman seeking employment. I was told there was no place for me back at my last employer, where I’d been adjunct instructor. I’d learned that a cousin of mine had successfully reinvented herself as a medical coder. She’d been a chemist for an automotive supplier and her job had been phased out. After going through a divorce and wanting to secure employment that allowed her the flexibility to care for her young son, she went back to school for coding.
It was a brilliant idea, I thought, and illustrates so well what many college-educated women do. They realize the market won’t sustain them at the level of employment they had before, so they go back and seek employment in a field with less requirements for education.
In addition, the work appealed to me because in high school I’d loved science and human biology. I’d considered being a double major in college, but I had a partial scholarship for English, and I couldn’t figure out how to fit the science part in. Once I had my first coding class, I was hooked. The subject matter fascinated me. I had to learn so much about anatomy and insurance and medical procedures. And I loved the population of women I learned with. You have to be so smart and disciplined to understand this material, and all these women worked so hard for jobs that pay about $16 an hour at the entry level. I encouraged my younger sister when she decided to follow in my cousin’s path as well, and she pursued a certificate, passed the coding test, a difficult test, and became employed in the field before I finished my certificate. In addition, the more I coded, the more I learned about my disease and the diseases of everyone around me. I’m still heart-broken about my brother-in-law’s death and the ways in which I was mean to him. I was so tempted to show him a picture I saw of a diseased liver. Part of me thinks it would have been mean, but another part of me wonders if that visual might have reached him before that last fatal bender he went on. And finally, yes, I love to learn. I’ve always loved to learn.
And I do still have a plan for coding in my life. I’m convinced now that I will live through the end of 2019. I’m not pursuing a coding job this year because I want to put my time into launching my book. But I’m staying on top of my continuing education credits, and if I am well at the beginning of 2020, I am going to try to find a coding job I can do in my home, to reduce the stress. My family’s economic situation is better now, in large part because my husband inherited some money when his mother died and then got a job promotion. He is not fond of my trotting out personal financial information when I write, but we still have a hefty balance on our parent plus loans to pay off! The danger of course–once I publish and publicize my book, people will know I have an incurable disease. Why would they want to hire me? If I were a full-time hire, I would be expensive to insure! But it’s a good way to force the conversation about what hurdles the masses face as they seek to stay insured.
Q: You’ve mentioned you don’t want this memoir to be reduced to simply a “cancer” memoir in a one-dimensional sense. In Winded you talk about your lifelong battle with depression, about being a parent, being a first-generation college student. Why was it so important to you to paint this three-dimensional portrait of your life living with cancer?
A: I want to clarify, first, that when I’ve talked about my memoir being “reduced” to a simple cancer memoir, I see that “reduction” as something done by the marketplace. As I began to write what I realized was a very traditional book, the cancer memoir, I read discussion about the genre being overcrowded. Many people in publishing were brutally honest about it, saying unless you’re famous or you have some other major challenge you can highlight, don’t expect to get a “cancer memoir” published. While I appreciate the honesty, I found that reduction of the value of such writing frustrating. Everyone has a story to tell. Some tell their stories better than others, and the market shouldn’t have to publish what it doesn’t value (if we’re talking free market economics). And yet. People who struggle powerfully with something and use writing to help them shape the course of their lives deserve to be able to seek out some way of telling their stories.
As for my desire for a three-dimensional picture, it’s almost embarrassing to admit it, but when you wake up one day and you have cancer, and you begin to examine the worth of your life, you take stock. I had the dubious honor of earning the “Most Likely to Succeed–Female” distinction in my high school class. And yet when I took stock and decided I had not been successful, I felt that I’d been a complete failure. Why was that? I knew the answer was complex. Part of my poor valuation of myself stemmed from my chronic and sometimes acute depression. Some of it stemmed from financial spreadsheets and what I’d earned over the course of my life. Some of it stemmed from the high expectations I’d had for myself as a first-generation college student. Some of my assessment of myself came from my realization that as much as I loved teaching, I just couldn’t process my student’s written work in a timely fashion, which seemed to be a huge failing. I probably let only some of them down, but I was very hard on myself for my failings, my inability to diagnose problems in written compositions or in short stories or poems in an efficient, healthy manner. I refused to be an expert and assess grades. The only area in which I feel I’ve had incontrovertible evidence of success is in my raising of my children, and to be perfectly honest, I’ve only had evidence of that in recent years. They’re alive, they’re compassionate human beings, and they’re good contributors to society.
But I think I needed to write about all these areas of my life to figure out, before I died, that I didn’t really screw up as much as I thought I did. I just used the wrong metric for self-assessment, a metric that equates success with money and recognizable “market value.”
Q: What do you miss most about being a professor teaching Writing/English?
A: The students, of course. I don’t miss the grading, but I do miss reading their work. I used to tell my creative writing students that my first reading of their work was my “dumb read” because I’d take the load of stories up to bed with me and read through a few before I fell asleep. It was probably my poorest reading comprehension time of the day, but I figured if I missed something at that point, it was a telling sign, and that might be a place to open the story up. Of course, I tended to love everything in those first, dumb reads, and as a result, I could be the cheerleader when I went back to the piece to think about where the story succeeded and where it lagged. I loved being a cheerleader. I hated evaluating. And I would love those moments when students would get going on some idea, whether it was about a textbook story or poem or a classmate’s, and then, in the midst of articulating a point, they’d make discoveries. It is so fun to watch students make discoveries in front of you. Especially when you haven’t made the discovery yourself!
Q: It might be considered indelicate to ask someone with a terminal diagnosis to think about the future, but what kinds of projects, writing or otherwise, do you see yourself tackling next?
A: It has been a lifelong dream to publish a book, so I am determined to enjoy every minute of this year. Because I am arguably in an end stage of life, I also feel like I have this amazing opportunity to thank people for what they’ve given me and say a good-bye of sorts, even if the parting turns out to be only temporary. On a more mundane level, I’d like to finish may be at least two of the partially completed book manuscripts in my basement. I’d like to get apart-time medical coding job if my cancer stays controlled. I’d like to host a group in my home for sessions that I’m calling “Writing through fear, pain, and joy.” I’d like to investigate the concept of death cafes, because I really need to talk about my own death and I feel like I’m in a good place to help others learn the skill of talking more freely about death, if they want to develop it.
I’m going to Ireland with my husband and kids in August. We will have some wonderful moments, I am sure!
