When Parents Become Patients: Inside a Cancer Journey

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Welcome to the Where Parents Talk podcast. We help grow better parents through science, evidence and the lived experience of other parents.

Learn how to better navigate the mental and physical health of your tween teen or young adult through proven expert advice. Here's your host, Lianne Castelino.

What happens when a parent becomes the patient? How can a health scare impact the emotional and psychological well being of both parent and family? Welcome to Where Parents Talk.

My name is Lianne Castelino. Our guest today is an entrepreneur and a podcast host.

Marissa Peters formerly worked in a corporate setting, was a performer on Broadway, and is a recent cancer survivor. She is the founder of Be Seen, a nonprofit organization, and she's also the mother of three. Marissa joins us today from Los Angeles, California.

Thank you so much for taking the time.

Thanks for having me, Leanne. I really appreciate it.

Marissa, you have been through a lot in the last 10 years. How would you go about summarizing what the last decade of your life has looked like?

I think the last decade of my life, that's a big question.

I think the way I would summarize it is a real, true awakening to not only listening to myself, listening to the cues and clues that my body is giving, but also those cues and clues that come from my family members, my husband, our three little boys.

I set out a goal to be purposeful and present with my time, ironically, about five years ago, just before the pandemic, just before the birth of our third son, 16 months before my rectal cancer diagnosis. And my goodness, what all of these things over the last decade have shown me is that we learn more from our kids than we as parents teach them.

We learn more from our adversity than any academic training.

And we learn more about ourselves when we face adversity and really make decisions about how we are going to be intentional and purposeful with our true life calling.

How did it manifest and what was going through your mind, especially when being a new mom.

And I think it just goes to show you how quickly the time passes, how much human nature kind of on its own can compartmentalize this passage of time. It started for me with, it was December of that year when I had that doctor's appointment.

And so it had been leading up to that where I was bleeding out of my bottom. And I knew that that wasn't normal. Started first with blood on the toilet paper. And as women we're used to seeing that certain times of each month.

However, this was different. And when I brought it up, it was quickly aligned to having hemorrhoids, which I did have after having at that point only one child.

I've since, you know, had three boys. And as women know, our bodies change significantly throughout childbirth experience, both pre and postpartum.

For me, the blood on that toilet paper was intermittent. It would start and stop. It grew to. In the end, I had changes in the stool consistency. My poop was growing thinner, more shaggy or Cheeto.

Like I had ribbons of blood in my poop. The toilet bowl was filling with blood. In the end I had urgency to go to the bathroom where I had a tough time.

I never actually pooped my pants, but, but I really thought I was going to. I took our baby's diaper and even put it, stuck it down my pants for fear that I wasn't going to be able to make it to the bathroom.

And in the pandemic, we didn't want to get out of the car and go inside of places. But I harrowed a Carl's Jr. And made it in urgently.

Like these are the types of things that my body was literally screaming at me saying something is so, so wrong here. And even down to that colonoscopy, cancer was not what I expected at all for them to find.

We did an endoscopy and a colonoscopy because of how severe my symptoms were. We wanted to utilize that prep and check the full GI tract.

And what they found were polyps and a 5 centimeter sized rectal cancer tumor right at the top of my rectum.

That was why I had such a difficult time holding my poop inside my body, because that tumor was taking up a lot of the space where that rectal reservoir that holds our stool until we need to go to the bathroom just didn't have room to hold the capacity that it is supposed to and was used to.

Five years is an eternity. Certainly with all of the symptoms that you described, whether they were intermittent or not.

At the same time, you've got a newborn, so you're trying to figure out your health. You're dealing with medical professionals, you're listening to your body. You've got a husband, you've got a newborn. Like, what got you through that?

With that mindset of continuing to advocate for yourself.

So I, being a professional performer and singing and dancing and my body truly being my instrument, I feel like that trained me to be incredibly in tune with my body. Ironically, the trick was all the things you listed off.

I was also a chief people officer scaling an organization, running a department, and held that position and worked throughout my entire treatment and then after as well. I was with that organization for about five years.

And I think, in part, there were a number of things that were an important part of my medicine throughout the rectal cancer treatment.

Certainly our children, finding new ways to be close and explain to them what was going on, what mom was experiencing, what they were witnessing, what they were experiencing, witnessing this and having changes in your parental dynamic overnight are not to be taken lightly. I think work was part of a healthy. I'll say healthy.

Some people might have a different opinion about that, but a healthy distraction that got me through. I wasn't. You know, our minds are so powerful, and I really. I dealt with anticipatory nausea at the end.

I dealt with a lot of fear and concern about if I would survive the surgery and certain things. So I think trying to keep a sense of normalcy through life was really, really, really important.

And to not abandon what I cared about the minute I met my cancer was something that was really important to me. And look, that might not be the choice that everybody makes, but for me, I didn't want to be away from our kids.

I didn't want to have distance, you know, I.

I wanted to continue to do those things that made me so happy, to live the life that I have and to keep a positive mindset and purpose kind of through throughout that journey. But music was an important part of that medicine, both in connecting with our kids and helping them process. Helping me process.

On our website on Be Seen Care, I've put specific lyrics and the songs on that playlist up on the website on the chance that it helps others either find something that helps them connect to the hardship that cancer brings to all of us that are diagnosed, but also as a means to say thanks to those artists. I mean, I can't imagine if I was a music artist and the music that I wrote became Such an integral part of someone's life saving intervention.

So it's really in that way to say thank you to artists like Sara Bareilles, like the Chicks, like Rascal Flatts. You know, there are a number of others on there, all the way to Lil Nas X and that, that walk up song that he has that my son chose for baseball.

These are all the through lines. When I say awake, it really put me back in touch with these things that that matter so much.

And leaning on them through treatment was really important for me.

New moms, certainly moms in general, and you can certainly throw dads in there, often put their own health and well being last after every other thing involving their children and their families. Take us through Marissa. You know, hearing those words, you didn't expect cancer. You were on this five year journey until it was actually confirmed.

When those words came out of your medical profession. Rational, what went through your mind that now you have to battle cancer.

It's really wild because I am headed to that same chair where my husband sat when we heard those words. We are extremely sure that this is cancer. From what I've seen. Right. I was coming out of the colonoscopy and my doctor, she is phenomenal.

Both when I told her my symptoms and then when she told me after the colonoscopy that I had cancer. In both instances, I'll never forget her face. I was still groggy from going through the prep. The prep was really hard for me.

I did not know the tips and tricks. To be able to get through nausea is not something that I love experiencing.

I don't many, I don't know many people who do, but for me it's like debilitating. And the idea of being nauseous and vomiting is just like terrible to me. I experienced both with my first prep and it doesn't have to go that way.

But when she told me that, my first response was, okay, that's great, but do I have to do another prep? Like this is barbaric. There has to be another way to do this.

Um, I've since found out a number of different ways to prep and tools and resources that help make it a lot easier. But I think most of all for my husband, like, I just remember he was sitting next to me and I had to advocate for that because it was pandemic times.

But I was really nervous going in because we had had some pretty severe complications with the birth of our third child. And so the PTSD that I was left from that was really concerning for me. Going into my next hospital experience to have this procedure completed.

But Josh, he went ghost white. I thought he was going to be nauseous.

Like, the, the minutes and hours that transpired after that were pretty surreal, you know, I immediately asked after saying, like, please tell me I don't have to do this prep again. I asked the, the nurse that was attending to go back and look at my medical records to confirm the date that I had voiced these symptoms for the.

To my doctors. And it wasn't just one doctor. It's a series of doctors.

This is something that systemically has become unfortunately common in a number of people, specifically with colorectal cancer, specifically with younger people that on the surface, they, we look seemingly healthy, vibrant, energetic. You can be those things and you can have late stage cancer.

Um, but that physician, she is a gastroenterologist, was so attentive, thorough, helpful, answered my questions, gave me suggestions and names of who I should call and what I should do next, because life started moving very, very, very quickly from that point. Ten days after that, I was already into chemotherapy.

I'd had a port installed on my body to be able to handle all of the infusions that I was going to receive. And yeah, we, we leapt into action very fast. We came home from that colonoscopy and communicated immediately with our children as well.

Made some calls to family, my immediate family, and to my boss before we came home.

But yeah, that's another snapshot I'll never forget is like pulling up from that colonoscopy, empty body, you know, as you go through doing the prep and in our front yard, looking at our little boys and our bab baby in the arms of our babysitter, like with our neighbor's kids, running, playing, but instantly knowing, my gosh, something's, something's wrong here. Like, I knew mom went through a lot to go in and, and get this screening done, but something's off.

So, yeah, we sat them down and communicated from the get go.

And we're really transparent with them along the way of what we were experiencing to give them a sense of assurance and foundation that we were going to communicate really directly with them throughout the whole journey. So each of the boys processed that differently. We can jump into that, you know, later whenever you'd like. But they each processed very differently.

At the time, our baby was 16 months old. I was still nursing him. Our middler was four and our oldest was seven. Going to turn eight a few months after.

So just to recap, it's 20, 21, you're 39 years old, you are diagnosed with stage three colorectal cancer. After five years prior you receiving or seeing the first symptoms that then led to this diagnosis.

You underwent chemotherapy as you talked about radiation, major surgery, reversal surgery. And you've got three young boys through all of this.

What did parenting look like for you in that time period when you are unsure of where your health journey is going and presumably on some level, fighting to survive and also trying to raise your boys, be there for them and be a wife? What did that look like?

That's right. I appreciate you. You calling out being a wife as well, because as a.

As a boy mom here, I count my four boys, my husband included, as that pack of what I care most about in this world. And getting all four of them to a place where I knew, and frankly, they knew that they could do this without me.

As wild as that sounds, that was my biggest concern throughout, is how will they, each of them, in their own ways, you know, be able to live beyond in an existence where I might not be there every day? And so I. That looked like a range of things. Like there were certain lessons and values that I really wanted to make. Sure.

Call me crazy, but even the baby could articulate and. And take away from this. I've worked with just an amazing therapist. Her name's Ronnie Vinte, and she's at la.

I share very openly about my work with her because over the last, really, four and a half years of us working intimately together, she was an integral part of trying to craft and articulate what are those things? Because I wasn't scared about me losing my life.

I was scared about who would be left behind and how irrevocably they would be changed from losing their wife, losing their mom. You know, for my siblings and my family, losing a daughter and a sister. Right.

So for my immediate family, it looked like some really specific things that. That I wanted to do. We went on a trip up to the beach in Oxnard just a few days before my rectal reconstruction.

We got family pictures taken right before we celebrated Christmas together. My surgery was on December 27th. Right. So my last meal was actually Christmas dinner, which my husband is crazy talented in the kitchen. So it was.

It was awesome. Before I went into my prep for. For that rectal reconstruction, there are certain books that I've read to the boys since they were born called.

One is called on the night you were born. And it's this beautiful narrative, beautifully illustrated and artistically written, that's about knowing how special you are and how unique you are.

And in these really subtle moments, like when a ladybug comes and lands and stays for a while, or, you know, other moments in nature, that those are reminders of how special and unique you are. There was a lullaby that I sing to our kids the night that they were born. And I wanted them to remember me by this music.

I wanted them to pass it on to their kids.

And the lullaby ends with, someday we'll all be gone but lullabies go on and on they never die that's how you and I will be Someday we'll all be gone but lullabies go on and on they never die that's how you and I will be and that gave me as much strength as I hope it gave them.

And they'll still walk around and sing their Lulu song and all of these things, as much as it was about instilling it with them, it was about giving me the confidence that helped me find peace, calm, and even joy, knowing that I was going, going into something that was so scary. I'll close with this last piece on the question of, like, what did parenting look like through this evolution?

Our youngest knew that as I would go through these surgeries, that I couldn't pick him up afterwards, right? I had a restriction that I couldn't lift more than five pounds.

So still, as a five year old, if something's going on, he'll ask me, like, mommy, like, will you be able to pick me up? Like, that's a signal for him of what was going on and how his world changed.

He could come and sit in my lap and sit next to me, but I couldn't carry him around. For our middler. He's an innately curious person. So that's where we met him at.

We named everything our tumor was named Earl, after that song that the chicks sing, Goodbye Earl. So we'd talk about Earl, we'd talk about the port. I would show him how and where it was flowing through.

He did bag changes with me while I had the ileostomy. My husband did every bag change with me. Talk about through sickness and in health. We would race ourselves to get through.

My oldest is an empath, and so communicating, processing. He can sense my emotion, his emotion. Like immediately he can walk into a space.

So there was a lot more conversation, communication, you know, working through some of the questions that.

And stories he was telling himself to continue to put him in a position of control, of strength, of that, of being like the captain of his ship, if you will. But it was very differentiated, and it changed by month.

Just as they were growing and I was growing and going through things to, to really process and try and be in tune to meet them where they're at. And look, I wasn't perfect. I am not perfect. But we're still working through this.

Kids will ask me questions now, like, can your cancer come back, mom, are we like done with this? I'm in scan season right now with my CT scans and other high risk surveillance and, you know, they, they'll ask questions about it all the time.

And we're, you know, we're very honest, but I'll tell them, your mom's got a big voice. When my time is meant to come, it'll come. But we're going to.

I think there's a long road ahead and we're doing everything that we can to make sure that that complete response, that we had the most optimal outcome from my treatment, that we continue to take every measure into our own control to make sure we can live as long and healthy as possible.

The latest statistics in the US and in Canada, each country shows that 40% of Canadians and 40% of Americans will be diagnosed with cancer at some point in their lives. Many of them presumably will be parents themselves. Did your perspective on motherhood shift, change, pivot during your cancer treatment?

And if so, how?

I don't think my perspective about motherhood and parenthood changed. I think even with all of the things that show up on your resume or your biography, becoming a mom is the greatest accomplishment of my life.

It's the greatest co production that Josh and I have ever put together. I think our family, the way we communicate, the way that we show up for each other has been paramount before this happened.

We eat dinner as a ritual, as a family, every night, screens down, phones down, all the things, like we connect and talk about what's on our minds, what happened in our day, like those kinds of things have been really important to us. I think I, I probably just like, I value them even more.

And even in taking the hard pivot to leave a career that I really treasured, getting to work with people in organizations and try and help them reach their highest potential is something that I viewed as an honor.

It just became so abundantly clear for me that if I could share my life experiences and truly all of my experiences leading me up to this point, kind of wrapping it up in one box, if you will, that there was a new way I was really meant to spend my time and dedicate my time. I knew that my purpose was always to make a difference in the lives of other people. I just really struggled with how.

And I thought first that would be the platform of being a professional performer. Singing career on Broadway.

It was never about fame for me or it was really about how does that platform allow me to connect with people on an individual and on a broad scale for them to really see greatness in themselves. The same then in chief people officer role.

And now with starting the foundation, we have brought the family, the boys and my husband like this has been a labor of love for all five of us since my diagnosis.

Sharing out about our experiences so that even in a small way, if other people don't feel alone or that they're going through something that you know, they can't get through, it's really become a family calling for us. And that has been formative for our children. Them seeing the power of taking hardship and using it for something really good.

I know that we're just getting started and so I'm really excited to see what the future holds as not only these boys grow up, but all of us as a family grow up together and continue to build this movement in a way that not only connects us more to each other, but more to people we care about who volunteered and gotten involved and new faces that we get to meet along the way who are seeing life changing experiences as a result of us sharing, sharing out.

It's extraordinary because you had many reasons to be angry, frustrated, felt cheated by your healthcare professionals that you dealt with, you know, certainly to some extent feeling cheated with being a new mom and you're in the different, you know, childbirth experiences that you had while you were coping with your health, but you weren't and you decided to find and create, be seen. Why was that so important for you?

Before I answer, I do want to call out like it's. There was a point. January of 22, I had a friend send me a bracelet that was the Morse code of F cancer, right?

And in the note they said, I wondered if you would ever get to this place where like you would be angry and you would be upset and frustrated and all of those things. I was frustrated more with the system.

It was really cumbersome for scheduling, for insurance, for getting to and from like all of the things, getting medical supplies delivered to our house, getting my pump unhooked, getting, you know, all of these things that are part of the system of healing you in place. But I definitely, I, I processed all of those feelings for sure.

And, and part of it was like, how can other people not understand or empathize in a way that would. I would see showing up in that way. Right. So to answer your question really directly, I.

Early in my life, I lost a number of friends, of colleagues, of teachers who. Their lives ended, from my perspective, far too early.

It started first with a very close friend of mine when I was in ninth grade, a freshman in high school who was in a car accident that left him in a coma for nine months, and he lived in a vegetative state for the following seven years. I saw what it was like for your voice and your life to be taken overnight. This was a friend that. His name is Blake.

Our moms grew up together in northern Indiana, and when they found each other in Indianapolis, our families became quite close and grew up. So my friend Blake, he was someone who I shared my dreams with. He shared his with me.

He wanted to grow up and become a professional basketball player. I wanted to grow up and become a professional singer.

And we talked about, you know, oh, we'll be neighbors, and you'll drive a blue go kart, and I'll drive a pink go kart, and it's going to be so cool, you know, goofy things that kids talk about as they're growing up. He lost it overnight.

And I have always felt that in the time that I have, I'm going to do everything I can to communicate with people that I care about, to tell them that I love them, to say the things that are unvarnished or taboo. Because I watched overnight someone's voice be taken from him.

I would go and sing to him bedside, and he had learned some signals that he could make to say yes or no. He would moan at certain times as his way of attempting to communicate. And I knew he was in there. He was trapped in his body.

And this is why using my voice is so, so important to me, because I see how quickly it can be gone. I see how quickly people lose the opportunity to communicate to others how much they care about them.

And so, you know, the things that I talk about, those symptoms I riddled off at the beginning, they're not easy to say. I might. You know, some people describe, like, it looks very easy for you to say those things. It's. It's not.

And I do it for that very reason, because if I can have a positive impact on just one person, then it's worth it for me to feel uncomfortable or to find a way to do this. So singing is a form of connecting with other people. It activates a different part of our brains. The same with talking about these things.

So I don't know if I answered the question very effectively, but.

We'Re almost out of time, Marissa. But I did have one last question for you.

If you could speak directly to parents who may have just been diagnosed and are terrified as newly diagnosed cancer or whatever terminal potential illness that they could be diagnosed with, what would you want them to know?

I would want them to know, number one, that the power of their mindset is more important than any medicine, any physician, anything. And that's something that is hard to realize.

But we have the ability to choose how we look at and how we process hardship, process things we wish maybe never happened in our lives. But rather than saying, why me? Say why not me? Why should it be somebody else?

And as parents, the stories that our children, whether they're adult children or they're infants, the stories they tell themselves are likely even more extreme than the reality of what you're experiencing.

So by speaking to them and communicating and building that trust where they know they can come to you and ask those questions, it's really important to the very things that you want to get through and not be concerned and to thrive and not be damaged or experience more anxiety than necessary about what you as their parent are experiencing.

It's a remarkable journey that you've been on. Marissa Peters, thank you so much for your time.

Founder of Be Seen Podcaster Mother of three we really appreciate your time and, and your intensely personal experience and sharing that with us. Thank you.

Thank you. I appreciate it. And yes, we need more help.

So if you visit us at Bcene Care, we would appreciate it and you can share our podcast From Carpools to Chemo that's available everywhere. But thank you so, so much for having me here, really.

It's with journalists like you that we can raise more awareness and prevent other people from having.

Really appreciate your time.

You too. Thank you. To learn more about today's podcast guest and topic, as well as other parenting themes, visit whereparentstalk.com.