GAR 104 | Living With Cancer

 

In November of 2012, shortly after Dawn was diagnosed with stage IV lung cancer, she learned that her cancer had the vulnerable EGFR mutation. In her new book titled Winded: A Memoir in Four Stages, Dawn writes about living life to the fullest after being diagnosed with stage IV lung cancer. She has been treated with the drug Tarceva for close to eight years, and she writes unflinchingly but with great tenderness about both her cancer fight and her struggle with depression. This is a worthwhile read for anyone who has ever struggled with depression, cancer, or a chronic illness. It is also a worthwhile read for the people close to that person.

IN THIS EPISODE, YOU’LL HEAR ABOUT THINGS LIKE:

  • How the actress Natalie Wood provided motivation for Dawn to write her new book titled Winded: A Memoir in Four Stages.
  • The lessons Dawn has learned from living with cancer and struggling with depression.
  • The impact living with cancer has had on Dawn’s family and her own self-worth.
  • How Dawn now knows that instead of being “a rube,” she is “a ruby.”

SOME QUESTIONS IRENE ASKS DAWN:

  • Having never been a smoker, how did you find out that you had Stage IV lung cancer?
  • What does it mean to have the vulnerable EGFR mutation?
  • How have you learned to live with “the voice” that comes from your struggle with depression?

SHOW LINKS:

Website: dawnmarienewton.com

CONTACT:

Email: dawnmarienewton@gmail.com

Instagram: @dawnnewtonwrites

Twitter: @Dawn_M_Newton

Listen to the podcast here

 

Dawn Newton: Writer And Former Creative Writing Instructor

 

I’m happy to have this opportunity to interview the gifted writer and former creative writing instructor, Dawn Newton, who will be speaking to us from East Lansing, Michigan. Dawn attended Michigan State University and subsequently earned a fellowship to attend Johns Hopkins University, where she received her Master of Arts in Fiction. She is married with three grown children.

Dawn is the author of two books, one fiction and one nonfiction. Her novel titled Remnants of Summer is a coming-of-age story of how collective grief and personal guilt threatened the individuals who make up a family. In November of 2012, shortly after Dawn was diagnosed with Stage 4 lung cancer, she learned that her cancer had the vulnerable EGFR mutation. In her nonfiction book, Winded: A Memoir In Four Stages, Dawn writes about living life to the fullest after being diagnosed with Stage 4 lung cancer.

She has been treated with the drug Tarceva for eight years and she writes unflinchingly, but with great tenderness, about both her cancer fight and her struggle with depression. This is no doubt going to be a special and touching interview. I’m so into interviewing and happy to be interviewing Dawn. Dawn, a warm, heartfelt welcome to the show.

Thank you so much for having me on the show, Irene. I’m looking forward to our talk.

That’s going to be wonderful. I truly believe that it’s going to help a lot of people who are reading who go through all kinds of traumas and problems in their lives. You have some wonderful ways that you approach what’s happened to you and all that we can all learn from. Please share your early years with us and tell us about your relationships with your siblings and your parents.

Thank you. The book Remnants, my fiction book, captures some of the flavors of my upbringing, childhood, whatever. I grew up in Southeastern Detroit in Oakland County, where there were a lot of lakes. There are a lot of lakes throughout Michigan. It’s the Great Lake state, but there are a lot of small lakes. One of the things that was interesting about the area where I grew up is that you could live in a working-class neighborhood but still have permission to go to the beach. When I think of my childhood, I think of that as one of the key features. We would go to the beach and swim.

I had an older sister and a younger sister. No boys. My father worked for GM. My mom did various jobs throughout time. She was a secretary, so she did different jobs. We had a mellow life when I was younger. We had a working-class ethic. We all took a babysitting class in middle school and babysat a lot. That was usually our first job. We all worked at a lumber store. We passed down the job. My older sister worked it for a few years, and then I worked it, then my younger sister worked it.

I wasn’t aware of external details and events. I was not very aware of class because I loved the neighborhood I grew up in. We were close to all of our neighbors. Even if there was somebody in the neighborhood that we didn’t interact with, we knew who their names were. It was at the beginning of adolescence that I started to see that there was a lot of dark in the world that I hadn’t paid attention to before.

At least you had a secure, loving early childhood, which is a blessing in itself. A lot of people don’t get that. You say at the end of his life, your dad was in a nursing home with MS and he came alive and became joyous in the shower. Do you want to tell us about your dad in that period?

My dad was diagnosed with MS or Multiple Sclerosis probably around the time I was in late college or early graduate school. At that time, my parents were divorced. My sisters and I took over helping him out. Although they had a good relationship, my parents had a good divorce relationship. We didn’t find out until the funeral that he came alive when he got in the shower. One of the aides told us that information.

I would go to the nursing home to see him. I was living in Lansing. I would sometimes drive down after work and see him and then go stay at my mother’s house. I went in once and was teary and said, “Dad, I don’t understand why you’re not present when I come and visit you. I know that the MS affects your brain, but I miss you so much and I wish I could talk to you.”

He spoke very haltingly a lot of the time. What he said to me was, “You’re my big girl now.” I nearly fell apart on the spot. Later, when we saw the aides who came to the funeral, we said, “Were you able to talk to him?” They both talked about him being nice and funny. I said, “When were you able to see that?” They said, “He always came alive when we gave him a shower. He loved having a shower. He would joke with us. He was there.” It was that I was often seeing him later in the evening and his faculties weren’t always together.

GAR 104 | Living With Cancer

Living With Cancer: “You’re my big girl now.”

What a blessing, at least, that they had that view of him and you got to hear that. Your parents also died 36 days apart, and it was during your pregnancy with your second child. Talk about traumatic. How did this experience change you? It also raised your awareness that a person may need to work through old grief experiences while confronting his or her own mortality. Would you like to speak to us about that, Dawn? Was your mom’s death very sudden?

Yes. My mother’s death was pretty sudden. She had a heart attack at work. She was in a coma for a while. My sisters and I went to the hospital and we were taking shifts and recording information that the doctors told us. After two days, she woke up and had all of her faculties. They thought that that was miraculous that she hadn’t lost any brain function. While they were trying to mend her, she had to be on a respirator. They couldn’t figure out what was going wrong. They wanted to send her to do a heart catheterization, but they thought it might be best if she went to a nursing home facility first because they didn’t know what was going on.

They sent her to a nursing home facility. We were a little nervous about that. I’d gone to see her a few days before St. Patrick’s Day and I was supposed to come back on the weekend with my daughter. That Friday night, before I was supposed to go back, they called and said she’d had a massive heart attack. They sent her to the hospital, and then we spent a week waiting for her to die. What had happened while she was in the hospital the first time was that my dad had a heart attack at his nursing home. They brought him in and he died down the hallway.

How did this raise your awareness that a person might need to work through old grief experiences while confronting his or her own mortality?

As a kid, I was known as one of the most sensitive ones in the family. I took it hard. My sisters took it hard, too, but I dwelled on it a lot and felt I wasn’t going to make it in life without my mom. I felt like I had to figure things out because I’d relied on her so much.

You were pregnant yourself.

I was pregnant and I wanted my mom, but I didn’t have her. I started therapy and processed the deaths and my depression. I continue to process to this day. I’m one of those people who doesn’t ever think that the journey is over. It’s ongoing.

I’m with you because I’m the same way. Every time I’ve ever had an issue in my life, I find out who can help me. I know I am not. I can help a lot of other people, but when it comes to me, I can’t see that clearly. That’s part of why I started this show. There are people who can help you. I’m so glad that you did that. That’s so very wise. I do the same thing, “Where can I go? Who can help me through this?” When it comes to you, you’ve never been a smoker, so how did you find out that you had Stage 4 lung cancer? What does it mean to have the vulnerable EGFR mutation?

One of the most interesting things about lung cancer is that the symptoms don’t always appear right away. The danger of lung cancer is that you can develop the symptoms and you can progress fairly far in terms of stages without knowing. We went through years where we assumed you were only going to get cancer if you smoked. My mother was a smoker. That contributed to her death, but it was a death of heart disease.

GAR 104 | Living With Cancer

Living With Cancer: The danger of lung cancer is that you can develop the symptoms and progress fairly far in terms of stages without knowing.

For me, I had some weird sensations in my body and my chest. I’d been an asthmatic kid, so I always paid attention to my lungs. There was weird flip-flopping in my chest. I went to the hospital, and it turned out there was lots and lots of fluid in there. They did all kinds of tests. I had to have a procedure done to empty my lungs. Later, the biopsy came back saying that I had lung cancer and then we found out that Stage 4 lung cancer had metastasized to my bones.

What does it mean that you have this vulnerable EGFR mutation?

It is weird to describe, but the cancer itself is what has the mutation. With all of these lung cancers that they’re finding out there, you often see television commercials about various drugs. They’ve figured out these various mutations and they label them things like EGFR or ALK or there’s one called KRAS. The mutations respond to certain medicines better than others.

The one that I have, EGFR exon 19, is the subtype. That cancer mutation happens to respond very well to this drug. Even though it doesn’t often respond with that much extra time, I’m one of the outliers who happen to benefit for longer. It’s interesting. Now we have COVID, so it’s easier to explain. Just like COVID has variants, that’s what happens with cancers. The mutations will only accept treatment so long before they mutate again. Mine has mutated again. I’m on another drug as of August of 2021. We’ll see how long I last on this new drug that’s fighting a new mutation.

You’re a wonderful, beautiful human being, and I sure hope that you’ve got a long way to go. You can help so many people with your book and what you’ve written. Tell us about your book and what was your primary motivation for writing Winded.

GAR 104 | Living With Cancer

Winded: A Memoir in Four Stages

I started journaling right after I was diagnosed. I was diagnosed during one semester in October 2012. The next semester, I only had one class, so I took the next semester off from teaching and I let the medicine work on me. I assumed that I was dying. I had two different motivations. One had to do with, I’d been a writer my whole life and I’d written parts of lots of books, but they’ve been fiction. I thought, “I’m going to write about this. I can record what’s happening to me. Maybe it will be of some use.”

Ironically, that in part came from Natalie Woods’ last movie where there’s a scene in the movie where they’re working with this new technology that works with your brain and can record things. There’s a scientist in the lab who’s a workaholic. She’s smoking cigarettes and she starts to have a heart attack. She’s determined that she’s going to record it because she’s a scientist. Above all else, she wants to record it. That came to me when I was trying to figure out what I was going to focus on this semester besides healing. That’s how it happened.

In a way, Natalie Wood inspired your book.

Yes, she did.

In Winded, you openly talk about your battle with cancer, living with the unpleasant side effects of the drug that is keeping you alive, and your struggle with depression while you cope with challenges and setbacks, and you also experience joy. Tell us about the lessons this has taught you. There must be many.

For me, they’re all woven together. As a person who suffers from depression, I’ve gotten on the bandwagon of mindfulness because I find that it pulls me out of this negative self-talk that goes on in my brain. If I can pull myself out and do some breathing or focus on a bird or whatever beauty I see outside or a piece of music, if I can pull myself out of my head, I’m able to appreciate joy more. Some of that involves going back and seeing in my brain the flickers of my parent’s faces and things that I did with them. That’s the way that I pulled myself out.

If I can pull myself out of my head, I'm able to appreciate joy more. Click To Tweet

Dealing with self-talk is hard because lots of people have voices in their heads. I don’t mean schizophrenic voices. I don’t have any education on that that I would feel comfortable sharing. This negative voice that speaks to you, harangues you and says mean things to you like, “Why would you want to write a book about cancer? Who cares?” you have to find a way to talk back to it. That’s one of the things I’ve worked on with my psychologist. The old psychologist that I had when I was in Virginia, too, tried to help me move away from that script in my head that was so mean.

How do you do that? In the book, you call it the voice. When the voice comes into your head, how do you tell to shut up or whatever?

Sometimes I have to come up with things to say. My psychologist has encouraged me to do it with an accent if I want to or do it with a voice and make fun of the voice. Take on another persona to shout back or talk back like diminishing the power, “I know you want me to do 20,000 things at once, but I need to focus and go through my list. Go away right now. Don’t talk to me. Let me do my thing. You keep on paddling in the background if you need to, but know I’m not going to be listening to you.” Those kinds of things.

That’s a terrific tip for those who struggle with these issues. I’m sure a lot of people have that negative self-talk in their heads. I was fascinated by your story in the book about a student you had who had cancer. His name was Jeremy. He impacted you tremendously. You learned a lot from knowing him. Would you like to share that with all of us?

He was an incredible role model for me.

How old was he when you met him?

He was 21 when I met him.

When he died of cancer, how old was he?

I don’t know if he was still 21, but he died the year after I met him. He’d been diagnosed when he was fourteen. He’d lived with his cancer for seven and a half years. The reason that we connected was, in part, because I wanted to self-disclose on the first day of class. I said, “I want to be transparent and I want you to know that I have cancer. This is going to be an experiment for me in terms of how I’m going to teach with the cancer. I don’t want to trigger anybody. It’s a creative writing class. I want you to know that if ever, for any reason, you need to bow out of the class, feel free. It can be an emotional subject.”

It can be triggering.

He stayed after class to tell me his story that first day. We bonded after that. His approach was a little different than mine. He’d lived longer with it and he’d dealt with so many surgeries and chemotherapy. He could be candid and a little cynical at times, but I was fine with that. Underneath it, he wanted to earn his college degree. He was smart and a good writer. We had a good journey, but he died in the summer, and it was a sad experience to learn about it.

How has the impact of living with your cancer diagnosis impacted your family and your relationship with yourself?

My family has a lot of struggles. Now that they’re older, they come out in a protectiveness. We have a group chat, and the biggest thing on the group chat is who’s getting vaccinated and when. They want to see me in the summer. Two of them live on the East Coast. The other one lives down the road at the University of Michigan. Everybody wants to protect me, but they want to see me. In the beginning, it was hard for me to articulate to them the ways that I needed help.

Do they even know the ways you need help?

No.

It’s such a new experience.

I’m not a linear thinker, either. Other people I know, including my older sister, would be able to say, “Can you do this and this for me?” I tend to sit there and go, “I’m not sure I’m thirsty, but maybe I’m thirsty.” It was a process. At times, I felt like I was hard on them. At times, I felt like I had to be honest with them and say, “I don’t think you’re getting it.” Now they get it. The two older ones are older. They know how to ask me, “What do you need? Do you need to sit down? Should I go get you some water?”

Your two older ones are girls and the younger one’s a boy.

My oldest is a girl, the middle one is a boy, and the youngest is a boy.

It’s got to be hard on them. What is your relationship with your own self-worth? Now that you’ve told off the voice and all of that, how are you doing?

The thing is when I say that the procedure is ongoing, it is ongoing. To be honest, for your readers, I will admit that I talk about in the book what it’s like to have suicidal thoughts and feel that you’re not worthy. That occurred before I was diagnosed with cancer. The ironic thing is that those thoughts for the last few years have not been as present. Whereas I suffered from depression and sometimes suicidal thoughts for many years. Now, mostly, it’s depression and sadness, but I don’t have the idea that I need to give up. That’s a huge accomplishment for me because it wasn’t always that way.

I’m very curious. We talked about your kids. Has your husband dealt with all of this? It’s a tough thing to have a spouse who’s going through this.

He has a tough time. His best way of dealing with things is often to compartmentalize. He works very hard. Since I’ve been diagnosed, he’s had the bulk of the work life, the bulk of the money-making. I’ve tried it several times since I’ve been diagnosed to get a money-paying position, but it’s harder when you’re older. I may be unfair, but it’s harder when you’re an older female. I’m at the point now where I have so many appointments and I get fatigued easily. It’s getting harder to look at that.

My husband bounces back and forth between trying to be present and then we try and support him so he can do his job. It’s challenging for him because he’s experienced the loss of his mother and a brother in the last few years and he’s got his own grief journey that he needs to work through while working through an anticipatory grief journey about me.

What led your oncologist to tell you that he does not view you as terminal the way he views his other Stage 4 patients as terminal? How did that impact you when he also told you he wanted you to live your life and plan on living into the future?

I’m a realist, and he is a very hopeful oncologist. The main distinction that sets me apart is that there are a few people, not a lot, who skew the statistics. Generally, it used to be 18 months and then it became 2 to 3 years. I blew the statistics out of the water for my first drug. He is extremely hopeful. Before I met him, he’d written an article about the balance between hope and realism. I read the article before I ever met with him. He does tend to the hope.

Sometimes I have to tell him, “I’m going to add a little grain of salt here. I’m going to keep positive. Don’t worry, I’m going to stay positive. I’m going to keep charging ahead as much as I can, but I’m going to leave most of the hoping to you. I’m going to live my life, put one foot in front of the other, and make goals.” I come up with goals like 5-year plans or 2-year plans, and that’s been very helpful.

GAR 104 | Living With Cancer

Living With Cancer: I’m going to keep charging ahead as much as I can, but I’m going to leave most of the hoping to you. I’m just going to live my life, put one foot in front of the other, and make goals.

It’s so fortunate that you have such a compassionate, positive-thinking doctor because when you go to a doctor’s office and sometimes you think they’re brilliant, can we find a personality over here?

He has a very charismatic, caring, big personality. He’s very empathetic and sympathetic.

In a situation like you’re going through, he sounds ideal. How has dying from cancer helped you to live with hope? I love that you’ve come to believe that instead of being a rube, you are a ruby. Tell us all about that. That’s beautiful.

Thank you so much. I have to credit my friend, Barb. She had given me a ring once. She gave it to me because I had talked about how I felt like a country bumpkin a lot of the time. In spite of my education, I felt like I didn’t know what the classy, smart, advanced people did. I kept on repeating, “Rube.” The next time she saw me, she gave me this ring and said, “It’s an old ring. I had it and I loved it. I want you to wear it. It’s a ruby. You’re a ruby.”

I would wear that ring every day to remind myself. What do you mean by your statement that one needs to be open to healing forces in the universe?

I can be a cynic. I can be a naysayer. I can have those aspects to my personality, but I do believe in, and I don’t know what I call it, a love force. I’m technically Lutheran. I’m spiritual. I belong to the Christian denomination, but I believe if I were born in a country where people were Jewish, I would be Jewish. If I were born in a country or a part of the country where people were Muslim, I’d be Muslim.

I believe in this life force, and it’s very much about love. The part of your book that I latched onto is this idea of I don’t know what I believe about heaven. I don’t know what heaven is or even if there’s a heaven, but what I do believe is we owe each other and ourselves that we need to show love. I can be ornery and grumpy. When I am, I hate myself. I make mistakes, but I do believe that there’s this love in the universe that we can tap into.

If we can tap into it, it can empower us and heal the dark side of us. I don’t want to believe that my progress, once I’ve been on drugs with cancer, is the result of someone intervening on my half and healing me, yet I do believe that things happen. We don’t know why they happen. It’s a mixture of science and positivity. They’re trying to encourage people to be positive. Sometimes I say, “Work on positive tomorrow. If you need to be negative today, let yourself be negative for ten minutes.” I try to be open to everything, but because I’m open, open-minded, and embracing both hope and gloom, good things can happen.

There is love in the universe, and if we can tap into it, then it can empower us and heal our dark side. Click To Tweet

You’re here talking to me now. They can happen. I have to tell everyone who’s reading this interview that Winded is a wonderful book, especially if you’re going through a lot of different things in your life, like a chronic illness, depression, or cancer. It’s a wonderful book also to gift people. I would like you to tell everyone how we get ahold of you and your book. There will be a lot of people interested in checking you out and your book there. Tell us all how to do that.

Thank you. The book is available through my publisher, which is Apprentice House Press. You can go to their website. If you tell them the word SUMMER, you can get a reduced rate of 20% off of the book.

You can say the word SUMMER and get a reduced rate off of Winded?

I know that my publicist was offering it for Remnants, which is my new book, a novel. I don’t know. I think it might work. Winded is also available at the press. Any fine bookstore would be able to order it. It is available on Amazon and Barnes and Noble.

Thanks, Dawn. Of all people in the world, what is Dawn Newton’s tip for finding joy in life?

It’s mostly about images. I love images even though I’m not a visual artist. I see something and I can memorialize it. In the office that I’m sitting in now, which is my daughter’s old bedroom, I get to see lots of images and things from her life. She’s got a bulletin board. There’s a picture on the wall that I used to tell stories from.

When I look outside, some mornings, there are these two big birds and I don’t know what kind. Those are big, wide wingspans. It is fun to see them soar, and I try to distract myself with those things. If I’m focusing on work, I try and stop and go, “Look at that. How about that?” I listen to music and I dance to it, sing to it, or marvel at the lyrics. That’s my way of finding.

It sounds like you get right into the present moment, enjoy it, and are mindful of it. That gives you joy. Dawn, thank you so much from my heart for sharing your book and your story with us in this special thought-provoking interview about your book, Winded: A Memoir in Four Stages. It drills into the essence of what it means to be human with its challenges, joys, and setbacks, including a Stage 4 lung cancer diagnosis.

This is a worthwhile read for anyone who’s ever struggled with depression, cancer, or a chronic illness and is also a worthwhile read for people close to that person. I have no doubt that anyone who reads Winded: A Memoir in Four Stages will agree with me that Dawn is most definitely a ruby. Make sure to follow us and like us on social at @IreneSWeinberg on Instagram, Facebook, Twitter, and YouTube. As I like to say, to be continued, many blessings, and bye for now.

 

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