Patricia Rodi on Life After Cancer

  📍 I'm Beth Huddleston, host of the World Circle. In today's interview, I talk to Patricia Rodi. Patricia is a mother, wife, cancer survivor, peer mentor, and author of the memoir titled "What Comes After Cancer? A Memoir for Patients, Family, and Friends Dealing with Critical Illness." In our interview, Patricia discusses her memoir and all the ways in which cancer has affected her life, including unexpected gifts and blessings she found along the way. Patricia, thank you so much for being here. It's really nice having you. It's a pleasure, Beth. Wonderful to meet you. I know that you've been living many years now after a cancer diagnosis, after surgery, treatment.

And all that goes along with that. And I'd like to start in the beginning for you with that. When you first got your diagnosis, what was that like? What was your reaction? What was that like emotionally for you? I think it's the same a little for everyone is it puts you in a very strange environment. The moment I heard cancer, like everyone else, I almost, I fled emotionally.

I wasn't present. I didn't hear any voices. They became distant. My husband was in the room with me as well as the doctor. And I seemed to be alone at that point. It was a very intimidating situation. It's so hard to explain because I felt like I had disappeared. How long would you say that lasted, that feeling of detachment, of feeling alone, of feeling like you disappeared. I think it lasted throughout most of my diagnosis period and the treatments. I felt as though I was watching someone else go through it. Which is a bit of a blessing because it helped me get through it. And it helped me through the roughest days of being sick all the time, and it just put me in a stronger place, I believe. If you could explain a little bit, what type of cancer did you have, and what was the treatment, and what were all the side effects? It was stage 3B stomach cancer, so it was quite advanced. But from what I understand, it seemed a little slow growing.

The surgeon had explained that the tumors I had seemed to be about 5, 6 years old, but went back quite a way before it became known. In between the diagnosis and the age of the tumors, I became pregnant with my daughter, my only child. It seems to be that during that time, that's when the tumors became cancerous.

I didn't know, obviously I did suffer a little bit towards the end of my pregnancy where I was forced to stop working and I thought it was an asthma issue because I was diagnosed with asthma as an adult, but I think it turned out that it was the pressure from the tumors that were becoming bigger in the stomach after a couple of years, my daughter was only about a year and a half when I was diagnosed.

We decided we're going to have a surgery and remove the stomach partially and then have some treatments if I was eligible. So we did the surgery, but when I woke up from the surgery, he told me I had to remove all the stomach because there were tumors everywhere, even at the bottom. So, I mean, from what they found initially from the tests were tumors basically at the entrance from the esophagus into the stomach.

So I said, okay, but I think that was a blessing that they removed the entire stomach because it removes the risk of the lining having missed any cancer cells. And it would have been a little strange the way they were going to restructure my anatomy. So I was a little, I was happy that it turned out the way it was.

So that was the first thing. And then they did say that I was going to have chemo and radiation, 25 sessions of each, which was a lot. And the first two chemo sessions put me in a hospital because they were way too much for me. I had lost already maybe 15, 20 pounds within a short span, about two weeks.

And I was already petite as it was, so I wasn't very strong physically. And so I did whatever they asked me to do. I started radiation on my, I believe it was my second treatment of chemo. And it turned out it was my daughter's second birthday when I started my chemo treatments. But when I started radiation, it was getting worse and worse.

Side effects were accumulating and my husband used to take me to the hospital for my treatments. And there was another couple who was, I believe she was there for the same cancer, but we both walk in at the beginning of every session. And at some point, both husbands were bringing us in with a wheelchair.

So you could see the accumulation of what the treatments were doing to us physically. It was rough. I can't deny the... Six months were awful, but I pushed through because I had my daughter to fight for, and I had no reason to let go, I had to just get through it. So that's what I did, and I had a good support system with my family, and I believe that a lot of people say, smile through it, or think positive, and honestly, I really don't think that makes a difference in the outcome, it can help others feel better, but I was sick every day, so it was very difficult to be positive.

What I did have is faith and the courage and the will to fight through as best I can. For that reason, I feel that made me get through it. Everybody has to find a reason to fight and I believe that we all have one, even if we don't think we do. With all of the illness and discomfort and the side effects that went along with your treatment and then having such a young daughter, what was that like?

What was that like, just trying to manage all that? It was difficult. As she was so young, she needed a lot of my attention. And because I was sick too much, I was not a mother to her. I couldn't. So I asked my mother, who wasn't as young as we'd like to think, but she was, she was an amazing mother.

Unfortunately, I lost her earlier this year, but she moved in with me. I made sure of that after my surgery, No one actually knew whether or not that would happen because we didn't know how far I would get. We didn't even know if I would get through the surgery. But thankfully she did move in and she stayed with me for probably eight months in order for me to help get recovered from all the side effects.

And then so she moved out probably about six to eight months later. And she took care of my daughter every single day. She took care of me and she had dinner ready for when my husband came home. And she's a godsend. She did way beyond her duties. I know that you've been volunteering and mentoring others who are going through their own experience with cancer.

What have you seen in terms of other family support? Are there some people you come across who just don't have that? That's right. It's very sad. I've had patients who had no one, they had no one to talk to. And even when you do have someone to talk to, like myself, I have a very big family. I had a big support system, but the moment you hear that you have cancer, you feel very alone and it's very sad to say, but it's true.

And I'm someone who was independent and I never really needed support from anyone, but that was a time in my life where I really needed it. It was basically out of my control. I've spoken to people and expressed to them that if you don't want to burden your family or your friends, you should seek psychologists, therapists in the hospital systems or wherever you can because it's very important that you unburden that fear and the stress of going through such a difficult period in your life.

It's not easy to go through something like that because you don't know what the outcome is. And unfortunately, we have no control over that. So the best that I could have done is offer them my story. I always say I'm a walking miracle and I do offer them the importance of seeking professional support because for some people that is more important than just sharing their story because they'll have depression.

They'll have a loneliness that is far gone, the normal that we can handle as individuals. I did my best to share how my story affected me and how it could affect them. And whatever I could share was helpful, I believe to them. I know that it helped because when I was diagnosed, I did the same thing. I found someone.

An older gentleman in the same foundation who I called for support to find out what comes after all this, what comes after the surgery. Will I make it? Has anyone made it at this stage? I found that so valuable and I found it, it brought me so much serenity because it helped me realize you're not alone and it helps you find strength because you know someone else has been there and can get through it regardless of the strength of the treatments or the fears that you're experiencing or the grim prognosis.

So that's what it was. So if you do have a support system, that's wonderful. But if you need a special kind of like feedback from someone who's been through it, speak to someone who's been through it. There are so many foundations around the world that have cancer support groups, if that works for you or one on one, which is what I do.

And it's really over the phone. I don't go to the hospital because at the beginning, I chose peer mentoring because it was dangerous for me to be in that environment. I was very weak. I was still recovering. It helped to do that on the phone and I wanted to do it. I wanted to do something. So they did have that option of being a peer mentor.

It's a gift for both of us, I think, for both patient and for me as a patient to share my experience and to hear theirs and to hear what they're going through and a lot of people asked me, how could you hear that every day? How could you hear and see people dying all the time? I said, the reward is greater than the pain that it causes me.

So it's almost like I don't have a choice and I think I owe it to them to share what I learned and what I could give to them. If I can support them in any way , that's why I'm here. When you talk through all of that and what people are going through, it strikes me, and it struck me in your book as well, that feeling that even if you're surrounded by people and you have family support, that there is a sense of being alone that is beyond. I don't know if you can put words to that or if there's a way to explain what that feeling is. I explain in the book a little bit about as I was the day that I was diagnosed, and we were driving to my parents house, my mom was babysitting my daughter and my nephew and my parents were there and my mother in law was there.

And as I was driving, as close as we were to the house, I felt like I was moving further away. Everything, all the objects, the houses on the street were just like floating away. It was almost... That feeling of a protection, it was a coping mechanism, I believe, that was surrounding me. I was in a bubble.

I was just far away. The voices were far away. The pain was far away. I was just finding a way to not be the vulnerable one, maybe, and being the strong one for other people, especially my family. I'm the youngest of four daughters, that couldn't have been easy for the family. My parents weren't young, but my sisters were all older than I was.

And I can't imagine how difficult it was to see the baby...when I was 35, I was the baby still in the family getting a death sentence. It's, I can't imagine how difficult that was. So I had to try to be as strong as I could, but it was a natural thing for me. It didn't, I didn't force it. It was almost a natural mechanism that appeared out of nowhere as soon as I heard the word cancer. So, I think that's what helped me through that or helped me help the others through that. Yeah, that's the thing because when you're going through this, it's interesting that you do have to be so focused on yourself and your treatment, but you're also worried about your family.

Because you have compassion for them and what they're going through, but you're also having to focus on yourself. It's a lot. And that leads me to another thing that can be really tough for people when they're going through a cancer diagnosis and treatment is financially, or in your case, in your book, you talk about some insurance issues.

In your experience, what was that like trying to cope with having to deal with all of this treatment, side effects, all of this stuff, while also thinking about the financial aspects? It was very stressful. At the beginning, it was evident the insurance, it kicks in and they take care of almost everything so I didn't really have to worry at the beginning, but at a certain point, they start asking questions and I'm still in recovery and I felt like I was being pushed to go back to work and I was a lot skinnier than I am now. I was undernourished. For a woman of my age, I was underweight. I was weak. I was still learning how to eat. Because I have no stomach, I have to learn how to eat again. And I have to... Learn how to eat over and over again because it kept changing.

So, there are a lot of issues that came into play even after the surgery and the treatments and the recovery. Till today, I'm celebrating almost 19 years of remission and I'm still learning what I could eat and what I can't and still have pain. I still have issues. There are a lot of things that I have to follow up with medically.

Because you don't have a stomach, you don't absorb nutrients in the same way. There's just so much attention on a day to day basis that I have to give my health. I had no time for a job. Never mind the physical weaknesses that I had. I tried doing the part time work and that, but it was too much. It's too much because it takes too much attention away from taking care of your health.

It also affected my memory a lot, the treatments. I just feel like the insurance was disappointing at a time when I didn't need to think about money. There were things that I used to take care of all the bills and all the finances in the home. And when I had to get surgery, I had to make sure that I had to give the ropes to my husband.

He was working, so he had to take care of that. He was taking me to treatments, so I had to make sure that he took care about the bills because I was not in a condition to be doing that. So, I still got stuck with the insurance issue and when they refused to continue paying me, it became a big thing in my life.

And I was seeing a psychologist for the fear and just to unburden what I didn't want to share with my family. I believe that I wanted to get justice for a lot of people who don't have the strength or the will to fight a large insurance company. We all know these issues. It's not a new story, but I felt like I needed to get justice for it.

I fought them. In the end, we settled. But I would have gone to court if I had to because it was not right how they were treating the condition. You cannot send someone to work when they're not able to. I was giving them the story as it's not like I fell off a ski slope, and I hurt my leg and now I'm fine.

This is a whole new anatomy. It's a whole new lifestyle for me. I'm not the same person, both physically and emotionally. So for me, there was no other way to do it. I needed to fight them and get the story out, and the psychologist asked me how important it was for me to go through all that stress.

And I said, it's important, not just for me, but for anyone else who needs to fight an insurance company when it comes to health. And she said, you're going to see that once you stop, a lot of the stress will go away. And I said, I don't know. I said, I don't think I'm getting stressed by it. I think I'm just doing what I need to do.

But as soon as it was over, I fully understood what she said. It did stress me and it did cause a problem emotionally that I didn't need to add to my already difficult situation, you know, seeing a psychologist is very helpful. I mean, she put a lot of things into perspective, and it was just wonderful just to share how I felt.

She was very empathetic. She was closer to me than just a psychologist because she seemed to fully understand the fears and the stress and the heartache. And it was a great big relief, just as she said, when the insurance issue was over, I felt almost freed by that craziness, which shouldn't have been in the first place.

You do talk about in your book that the experience of actually getting cancer and then moving through it and surviving and living. You mentioned you thought of it as a blessing or a wake up call. What would you say about that? What does it mean to you now? I still feel that it was a blessing because there are a lot of things in my life that I wouldn't have been able to do and volunteering is one of them.

My whole life, I have searched for something that I could do to offer to other people in a positive way. And this was an immediate decision for me. When I went to speak to the foundation, they say normally we wait until a year after your treatments are over, but when I had a, I had a questionnaire, she spoke to me a while and she realized how ready I was to offer my support to others.

So she got the ball rolling right away and I started almost immediately mentoring patients and that was a big gift for me, and I also felt, again, as I said earlier, that they were also giving me something in return. Sharing their stories, there's a big connection with cancer patients. It's something that maybe two ordinary people wouldn't understand.

But I've met people that I know who have had cancer, and I've gone to see them, and when you're alone with these patients, there is a connection that is undeniable. They'll say something like, you know what I'm thinking. And you don't need to say anything. You don't need to say, yes, I know what you're thinking.

You're thinking, I'm dying. You're thinking, I'm not going to make it. You're thinking, this is so difficult for me. How did you do it? It's an endless, there's so much that two cancer patients silently share. So would you say then that the act of service of being able to help others, volunteering, that's a big aspect of you saying this was a blessing.

Absolutely. Because beforehand, like you said, you were looking, you were trying to find a sense of service. And that also leads me to what we were talking about previously is when you were talking about fighting the insurance company and that you just literally couldn't go back to work. Memory issues, dealing with physical aspects of not having a stomach, all of this.

But before that, as you talk about in the book, you were very independent. You had a job where you were helping run this place. So you had that, but then you lost that aspect, which I would imagine at first was tough. Yeah. I loved my job. And I loved being crazy busy and I loved the responsibility and I missed it for many years.

There was a time years later, years after the recovery, one of my sisters, she got divorced. And it helped me realize that I was stuck in a circle of fear. I was stuck in a box where... I was only thinking about, hey, my next test is coming, my next doctor's visit. It was more about the tests, but even when you'd see the doctors, it was always stressful.

The cancer could have come back. For a lot of people, I was told it would come back within the first two years for this type of cancer. But at the same time, even 10 years in, I still felt like, oh my goodness, my, my next scan is coming. Then it was the waiting part, weeks later, I would see the doctor to get the result.

It was very stressful. So when I made this realization, I felt like I came back from that coping mechanism that I described that I had in the beginning. So that lasted probably about 10 years. What happened was the old me came back and I've been writing since I was at least an adolescent, a young adolescent and I said, I need to write this story.

I need to share the story because I know that there are people who even when they survive cancer, things can be more difficult than before they were diagnosed or before they even knew they had an issue. So I said, I need to write this story and I've always written little memoirs, short stories, articles, things like that.

But I never tried to get published. I ended up publishing my memoir eventually and it touched a lot of people. A lot of people came back and said, great that you're putting this story out. I do book signings and I meet people all the time and they say, I can't believe I met you today. My mother was just diagnosed.

She would love to read this book or my husband is having trouble dealing with this. Maybe he'll feel better if he reads the book. So there's so many stories. Some people even say I can't read the book because I just lost someone and it's very difficult, but I understand that as well because there are two sides.

And there are some people who don't want to deal with it and can't deal with it, whether you're the patient or the supporter, a family member, a friend. But I always say that even the beginning of the book might be difficult for some people, but there's so much inspiration that follows. There's so much, I don't know if I can call it wisdom, but there's so much wisdom that we can take from someone else's experience.

Like how did I move forward in my life? Look what I did. I volunteer and I went back to my lifelong passion of writing. So I write a lot. I read a lot. And for me, those are gifts that I never would've had if I wouldn't have been diagnosed with cancer. I'm lucky, I'm one of the lucky ones to have survived it.

I'm so grateful. And the most important thing is I got to see my daughter grow up, which was probably the biggest fear that I had during my diagnosis. So she's gonna be 21. I'm lucky to be here today and I'm lucky to have her and, what more can we ask for in life? We do what we can and we try to enjoy life as best we can.

When you talk about getting back to your writing that has been a lifelong love of yours, in this particular memoir that you wrote and published, what was that experience like? Actually sitting there and writing it all down, what happened to you? It was very healing. Just like going to the psychologist was healing.

Writing it down, because for me, writing was always a personal gift. It was always helping me deal with either emotions or creativity, having to get out on paper. For me, writing this memoir brought a lot of peace to the situation. Even more so, after it was edited and ready to be published, I reread the book.

So I reread it in a way that it was, my editor was amazing. She's, she made it beautiful. I say it's beautifully written because she put it in a way where the story seems natural and it brings out the best in my story. And I felt good after reading it. I felt connected to my life and to the people in it.

And it helped me see things that maybe that I wasn't seeing while I was in treatment or recovery. So, it does help, it is very healing and I suggest that to a lot of people. You don't have to publish it, but write it down because you see things that even as you're, if you're able to do it while you're in treatment, that's even better because you're writing things down as you're feeling them and you're describing them as you're feeling them, but then you can do what you want with it. Go back, read it. It helps put things into perspective. What is anything else that you would like to say, if anything, to those who maybe are dealing with cancer themselves, to their loved ones or friends?

What are any messages you'd like to put out there? Look, I had a bad prognosis, as I've mentioned earlier. I was not told directly, but I heard many years later from my husband that I did not have much time. And I don't know how I would have reacted if I would have known that I had weeks or months to live. Some people want to know and I believe that I would have wanted to know because you want to say goodbye, you want to put your life in order. At the same time,

I don't know if I would have had the same, I don't know that I had optimism, but I don't know that I would have had the same, "maybe I could make this, maybe I could survive" and if I would have known. There's a question there that I can't answer. How would I have handled it if I would have known, and that would be different for everyone.

What I could tell you is don't give up and find something to fight for because you do have something to fight for even if you don't have children If you don't have friends in your life, you don't have siblings, fight for yourself because you deserve that. You deserve the chance to continue living and enjoying your life and finding your passions and fulfilling them.

And there's no reason to quit. There's no reason to feel discouraged. And no matter what the outcome, I'm learning that you need to have peace with either outcome. I know that I did my best. I know that I fought through it, but in the end, I could not control the outcome. I needed to find the peace that if it came back, I had to deal with it.

It's really out of our control, but if you find peace with whatever your outcome is, it's, brings a lot of serenity and it helps you through it. There's a lot of people who experience anger while they're in treatment and I've seen that, but at the same time, that's, I believe that's why there's anger.

It's because there's no, there's missing something and it means that you need to deal with it. You need to understand this is my outcome. I can't do anything about it, but I need to find peace with it because if you can't change something, it's normal that it will make you angry. And I don't think that I was ever angry.

I was sad. I was there for some moments that I described in the book, especially at the beginning is I cried a couple of times, not much, but I cried a couple of times and I said, I didn't want to die. But as I said, over time, when you try to find peace with it, the possible outcome, it helps put things into perspective.

And it helps you understand that if I do my best, and if I find something to fight for, maybe in the end, I'll be at peace, whether I survive or not. And more than that, what can I offer? I can't offer a guarantee. I can't offer, people say, will I make it the way you did? I can't promise you that. Because I don't know if mine will ever come back.

It could come back in different places for me, but I can promise you that if you find peace in your heart to accept the diagnosis or the outcome, that serenity is above all the best you can do for yourself. It's such an extreme heightened level of just living and accepting that we can't control everything, but it's this heightened immediate sense of that.

From your vantage point, it sounds like to me, you reached a place of peace and serenity where you can just live and accept. I can't control this. I can't control what's going to happen. And so that's what I'm hearing is that sense of just that in general in life that we could all live with a little bit more acceptance that we can't control everything about our life or when the end will be or any of that.

But it's so heightened in the sense of a cancer diagnosis. Yes, it's what I describe to a lot of people who speak to me. You can't let the fear run your life. You can't let the fear be bigger than you. We all have the fear. I still have the fear. I feel something sometimes, and I wonder, should I go get checked?

But you try to rationalize everything. And like I said, once I came back from that coping mechanism, before I started writing, I realized that the fear was running my life, not the other way around. I try to describe to people is it's okay to be fearful. It's okay to live every day feeling, is it going to come back?

Where is it going to come back? How will I know? Will the doctors keep checking? But don't let it prevent you from living every day. That is probably the most important lesson that I've learned. And I think I've accomplished that. And then one final question I have for you is, in what you've been describing, you did have a dire prognosis.

You didn't know at the time, your husband did, but what would you say about if people do hear a really dire prognosis? I can tell you that, though I didn't know how much time I had, when I sat down in the office with one of the specialists, not my surgeon, but a specialist who was doing a test prior to surgery, he's the one who told my husband about the timing.

But when I sat in there, I could tell on their faces that it wasn't good. And he told me, as I've said in the book, if you have something to do, then do it. You can't get more more dire than that. I don't know how I took that. I, it wasn't good. It didn't feel good at all when I heard those words and it probably took away any hope that I had of survival.

So I, using that, I can tell you that if you hear that, if you hear that there's nothing they could do, for one, it's important to get your affairs in order because at my age, at the age of 35, my affairs were not in order. I have to say they were not. I had a child. I had just moved into a house. My life was actually just starting.

So for me, nothing was in order. Secondly is maybe mend relationships that were not mended and telling people that you love them probably is the most important thing because you don't want to end your life, sorry to be so grim, but you don't want to end your life with those regrets. So I didn't do that because I kept fighting. I, I never saw an... Like an immediate end. I mean, I saw a possibility, but I never saw an immediate end. So my story is a little different from some, but I did feel that feeling when he told me to do what I had to do. So I was starting to think about what do I need to do?

What do I want to do? Do I have to, I have to get a will in order. I have to, which actually I did just prior to surgery in the hospital. Never do that. But the thing about the relationships, it changed after I started. My background is that we're Italian and I never heard my parents say, I love you. But I started telling them I love you all the time, and it became very normal in the household for them to say that as well, because they're from an older generation and they didn't use to do that.

There were a lot of beautiful things, so many beautiful things that came out of my survival, not just for me, but for the family, for relationship with friends, and it's just, there's so many gifts that you can find in every aspect of a diagnosis, whether it be grim or not, because we don't know ...even if it's not grim, it could change and every day should be a blessing.

And every day you should feel lucky to have with the people that you love. Thank you so much for being here. I really appreciate you being here talking to me today. It was my pleasure.