Talking Hope: Orange County mom navigates rare ovarian cancer diagnosis with hope and gratitude

“Let people in, and know you are not alone.”

Heidi Paolone woke up from surgery in 2022 to hear the startling words, “You have cancer.” During a routine procedure at a local hospital, Heidi’s care team discovered concerning signs, and further testing revealed tumors associated with a rare form of ovarian cancer. Although less common than other types of cancer like breast cancer or colon cancer, ovarian cancer is the second most common gynecologic cancer in the U.S. — more than 236,000 women are living with ovarian cancer in the United States. Join us as Heidi shares her personal healing journey and what navigating cancer has taught her about resilience, gratitude and hope.

 


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Darrin Godin: Hello and welcome to Talking Hope. I'm Darrin Godin and I'm pleased to be speaking with Heidi Paolone. In 2022, Heidi went in for a routine surgery and woke up from surgery to hear the startling words from her surgeon. We think you have cancer. Heidi's care team discovered concerning signs and further testing indeed revealed tumors associated with a rare form of ovarian cancer. Although less common than other types of cancer, like breast or colon, ovarian cancer is the second most common gynecologic cancer in the US. More than 236,000 women are living with ovarian cancer in the United States, and around 19,000 women will be newly diagnosed with ovarian cancer this year alone. Heidi's diagnosis marked the beginning of a personal healing journey filled with emotions, challenges, and growth. Heidi, thank you so much for joining us today and being willing to share your story and help our listeners focus on hope in the midst of their own journeys.

Heidi Paolone: Thank you so much for having me.

Darrin Godin: Let's start with who you are and what's important to you, and tell us about yourself. Tell us about your family, and most importantly, how are you doing today?

Heidi Paolone: Well, I've lived in Orange County my entire life. I've never lived anywhere else, so I know the area very well. I know a lot of people. I've always been involved in community, so I love just being around people. And I have three children. I'm married. I have twins that are 25 and I have a 16-year-old, and I am actually doing really good right now. As of right now, I have no evidence of disease, so I'm very happy about that. And I just love being with my family. I love being a mom. I love being with my friends. I love being outside.

Darrin Godin: You love living life. Congratulations on that. That is great news, and we're so happy to hear that you're doing so well. Can you take us back on your cancer journey and tell us how it began and how did you find yourself at City of Hope Orange County?

Heidi Paolone: Sure. So I luckily had a really good relationship with my gynecologist and we had gone back and forth. I was having some perimenopause, classic symptoms, but there was something I've always been really in tune with my body and super into my health. And I knew something was wrong and I had this great relationship with my doctor, and I just kept telling him, "I just feel like something's wrong." So he really helped me to get to a place where we were discussing having an elective hysterectomy, which I thought was really extreme at the time, but that saved my life because when he went in to do this elective hysterectomy, that's when he found the tumors. And when I woke up from the surgery, he said, "You might be mad at me because I didn't do the hysterectomy, but I want to let you know that I'm really worried that you either have ovarian cancer or colon cancer."

My dad died at 60 of colon cancer and I had pretty much changed my life to be really healthy after my dad's diagnosis. So I wasn't upset. I can't explain the emotion I had at that time, but I just stared at my doctor and I just thought, "Okay. He said maybe." So I'm so optimistic, which sometimes might not be a good thing, but I just thought, "There's no way." So he said, "Go home, we're going to send this off. We're going to have it looked at." Well, sure enough, a couple of days later, he called me back and he said, it is ovarian cancer, but we can't figure out what it is, what kind it is, so we're going to send it somewhere else. So then it went somewhere else, and when he called me back and told me it's a rare form of ovarian cancer, I asked him, "What do I do?" He said, "You need to go to an oncologist."

So then he starts listing a couple names off, and I just looked at him and I said, "Well, who would you send your wife to? Why are you giving me all these names?" So he said, "Hands down, Joshua G. Cohen at City of Hope in Orange County." And I had a friend who had just been a patient at the Orange County campus, and so I knew it was a great place to go. So I came home and my mom ran over and we got on the phone and I thought in my head, "There's no way it's going to take forever for me to get in there." Called on a Friday, I was seen on that Monday. It was Halloween I'll never forget, and that's when I met Dr. Cohen.

Darrin Godin: Wow. You said a couple of things in there that really stood out to me. First, you had a family history of colon cancer, so that probably sent your mind down one direction. Secondly, you said how optimistic you are. The word that he said, maybe you were like, okay, let's keep hope here. And then thirdly, you advocated for yourself by saying, "Who would you send your wife to?" Obviously you're going to send your wife to the best of the best. Who would you go to? And that's when he gave you the recommendation. So great job advocating for yourself. I think that's a great message for others too, to know as well. A lot of people don't know how to advocate for themselves when it comes to a cancer diagnosis, but that's a simple way to say it to the doctor. Who would you send your wife or your spouse to? That's great. So you ended up at City of Hope and you ended up with Dr. Cohen. It sounded like we got you in pretty fast. So how was that experience when you first met with Dr. Cohen?

Heidi Paolone: Well, I still was in shock and I was still positive, and my kids all came home and we went my whole entourage, me and my husband, my adult twins, and my mom walked into City of Hope on that Monday Halloween, and everyone was dressed up and I just thought, "Wow. These people are human. They're dressed up in Halloween costumes, but professional and so kind and welcoming and it's so beautiful there." And I went right upstairs and Dr. Cohen walked in and he was so accommodating to my family. My twins were sitting outside and he said, "Let's get a conference room. Let's involve them." And he knew exactly what he was going to do with me. He had already gone over all of my records, spoken to my doctor, he had a plan. I couldn't believe it. I thought I was just going to go and meet him and then we were going to go home.

No. I had everything done. I had seen a nutritionist, a therapist that day. I had all the multi-disciplinary things offered to me set down. I could not believe how amazing that first meeting was. And we knew when we were going to do the surgery within a few days, things just got moving. I couldn't believe the things that they had offered me, and not only me and my family. My family felt very safe and calm there, and we were wearing our masks and I'm very, very close to my mom. And I remember Dr. Cohen said, "I'm okay if you want another opinion." And my mom, I could see over the mask, she darted her eyes at me like, "No, we're staying here." And we all felt the same. We left there, I don't want to say happy, but we left there so positive and comforted and safe. Dr. Cohen made not only me, but my entire family feel safe. It was an amazing experience.

Darrin Godin: That is tremendous. We hear a lot from our patients that they don't feel like City of Hope just takes care of them, but takes care of their loved ones, the folks that are with them, their care team or their support team that's around them, whether it's family members or friends. It's great to hear how well you were treated. I'm glad to hear that. Why do you think that is so important, Heidi?

Heidi Paolone: Honestly, I think my attitude in the way I'm living my life is 100% due to City of Hope, and I want to give Dr. Cohen the most credit, of course, because there has to always be a human element to it. And I don't think these doctors realize that I'm one of thousands of his patients, but he is in the top 10 most important people in my life. I mean, he is that important to me. I'm so grateful to him and City of Hope just offered me things that I know I couldn't have gotten anywhere else. Whatever I need, I can get there. And from the nurse navigator all the way to the radiologist, anytime I have a question or... I have never left there not knowing anything.

And I think that where you get your care is more important than anything because you could really go down a downward spiral. Every time I walk in there, I see the same faces, the people that are at the front desk, they know my name. I feel home when I go there. I feel like I'm just going home. It doesn't scare me to go there. I actually sometimes I'm like, "Good. I get to go to City of Hope. I get to see..." I've made a lot of friends there, other patients, and it's just an amazing place. I can't talk about it enough.

Darrin Godin: Wow. You recently sent a letter back in time, a letter that you wrote to your past self on the day you received your diagnosis. I'm going to read the first paragraph and I want to know why you wrote this letter. You said, "Dear, scared and vulnerable, today you'll learn what it means to be fearful. You will hear the words, you have a rare form of ovarian cancer. You will need injections, infusions, MRIs, bone scans, X-rays, and complex surgery. You will feel like you are always at a medical appointment, and those appointments are constant reminders of your illness," and you go on to say so much more. Why did you write that letter Heidi?

Heidi Paolone: I wrote that letter. First of all, I was documenting a lot of what was happening to me. I think that's really important for myself for a healing exercise. Also, I always want to help other people. I'm always been an open book for anything that's going on in my life, and if somebody walked up to me and wants to know my entire story, I'll tell them everything. Because if I can only just help one person, it helps me. Helping other people helps you. And that letter, I wanted to get that down on paper because I wanted to remember what it felt like now versus when I was told and how much I've grown and how much I've learned. And I'm just really proud of myself and how brave I am, and I want to be an example, not only for my children, but for other people.

So I wanted that letter out there because I want people to know that yes, it's a horrible, horrible thing. Not only was I told that I have cancer, I was told that I had a rare form of cancer. I think there's only 20 other people that ever had it. It's something crazy like that. So it's almost like a double whammy, and I just wanted people to know that it's really bad when it's first told to you, but it will get better. It really does.

Darrin Godin: Wow. What are some of the uplifting pieces of advice you gave yourself and what do you wish you had known sooner?

Heidi Paolone: Okay. Number one, I wish that I hadn't spent a lot of unnecessary time researching because I think my oncologist knows much more than I do. But for some reason I thought I could learn, "If I stand upside down or drink this or say this month or 20 times a day, I'll be cured." That was such a waste of my energy and such a waste of my time. And I have to give Dr. Cohen the credit for stopping me on that rabbit hole because I was coming in with these questions, "Well, what if I do this? What if I do that?" And finally one day he got on his little rolly chair and rolled right up to me and said, "Heidi, I'm really worried that you're wasting your time on these researching when you should be spending your time with your family and enjoying your life."

I walked out of City of Hope that day, and I said, "I'm done. I'm not looking at anything anymore. I'm trusting him. He knows what he he's doing. Let him do his job. I'm going to go live my life." I'm still not eating the way that I think that I should healthy and the common sense things. But I think that that is one thing as a cancer patient, you can get really consumed in because there is so much information on social media and what other people are doing, and it's a disservice because most of it's not even really accurate. So that would be my big piece of advice. And the other one is to, this is not for everybody, but for me it was to let people know because my cancer is rare. What if somebody's mom has it? And you never know by spreading your journey, who you're going to meet through that. And like I said, I've met so many amazing people that are on the same journey.

Darrin Godin: Wow. Another paragraph you wrote said, "You'll inspire others with your story and become a hero to your children. Five months after surgery, you'll be thankful that your body hasn't let you down. You'll run 1/2 marathon. A loving friend will introduce you to yoga. You'll discover a new hobby, Pilates as a way to manage pain. You're going to travel to beautiful places with your family this year. You will stop being preoccupied with researching cancer and supplements, and your frustration and anxiety will fade." I think that's such a great... You were able to see that after the fact, but going back and telling yourself or even telling others, there's life to be lived and you'll get there.

Heidi Paolone: Yes. I have a group of girlfriends that we do 1/2 marathon and we go on hikes and they're my fit friends. And I never once told myself, "You're not going to do it this year." I didn't. I just said, "Okay. It's November. Let's see what happens." I asked Dr. Cohen if I could do it. He said, "No problem." My girlfriends went out. They all got ovarian cancer shirts for the day that we were doing the marathon. And it didn't stop me. I do have some joint pain from the medication that I'm taking. So one of my girlfriends, she's a yoga instructor, she showed up at my house. She said, "We're doing this. We're doing it." And I got really into it, and it really helps me with my mind, and I think it's great.

So within this journey, I have learned a lot of new hobbies, and I've gotten closer to a lot of people that I wasn't close to before. And it's just, I don't want to say there's good things in it, but you have to see the good things or you're just going to take yourself down. And I can't talk more about letting people help you and just be vulnerable, let people know, "Hey, I'm scared." People are there. There are so many good people.

Darrin Godin: There are indeed. You also mentioned about approaching some things differently. So what are some of those things that you would've approached differently?

Heidi Paolone: Well, I don't know about differently, but in the beginning I was a little bit quiet because I wanted a plan. My son was 15 years old at the time. My adult children knew everything from the beginning. But my 15-year-old, I didn't want his story to be bad. I just needed more information for me to tell him. So we waited until after my surgery with Dr. Cohen to remove the tumor to, and I needed a plan. I think I would've done that a little bit differently because when I sat him down later with my husband to tell him the truth, he said he already knew. And that made me feel really bad. But he's okay. But I would've done that differently if I could have, because I told my close family, but I just wasn't ready to tell everybody. And I don't think you should be afraid.

But again, people are different. And the other thing that I would've done differently, and I could credit Dr. Cohen for this too, is we don't have to think of cancer as this big huge C-word. Cancer can be looked at as a chronic disease like diabetes or heart disease. And it's something that we have to live with forever. But you can break it down a little bit and think about of it that way. And that really helped me not look at, it's such a scary word but it really is. It's a chronic disease and it can be managed. So I wish that I would've had that thought a little bit earlier in my journey too. But now I do, and I think it's great.

Darrin Godin: Thank you. You also talked about putting away the to-do list. What was that all about?

Heidi Paolone: Well, I'm your classic type A. I have a to-do list every day. And I was living my life like that. And I don't do that anymore. If I don't feel like doing something that day, I'm not going to do it. My kitchen doesn't have to be perfect. Everything doesn't have to be picked up and put away before I go to sleep, and I'm letting loose a little bit.

Darrin Godin: Nice.

Heidi Paolone: As mom, I think we all have that.

Darrin Godin: I know my wife certainly does. There's lists on the table every day, even things like wake up. Do you have to put that on the list?

Heidi Paolone: Yes, we do. And now-

Darrin Godin: She's like it's the way I categorize and put things in order. So what are some of the things you cherish about life right now? The things you enjoy to do, things give you confidence and support. I know you've talked about a few of those already, but?

Heidi Paolone: Well, I always liked to travel, but last summer I went on several vacations with my family. I think everybody wanted to take me somewhere and do something with me, and I really like that. So I want to do a lot more of that. And like I said, my twins are 25 and my older son just turned 16, so he's going to be driving here shortly. And I want to spend time on myself. I've been a mom for 25 years, and I don't think there's one day I can drive my kids to school or make their lunch, and that's what I wanted. That's who I wanted to always be. I always wanted to be a mom, but now I'm going to do some stuff for myself. And I don't know what that is yet, but I really like the mind body aspect of things that I've learned.

I like helping people. I like community. So whatever I do, I'm going to use what I've learned and I'm going to help people. I'd love to volunteer at City of Hope. I'd love to get involved in ovarian cancer awareness for women. I think that's very important because there's no test. There's no test for ovarian cancer. I had none of the classic symptoms at all. Not even one on the list. Actually, my symptoms were things that weren't on the list, which now when I look back, I think, "Wow, that was a red flag." So that's what my future is going to look like.

Darrin Godin: And Heidi, what does the word hope mean to you?

Heidi Paolone: So to me, it means it is a belief. And before my diagnosis, I'd be like, "I hope I find the right dress to wear to that dinner party. I hope my son gets an A on his test." It was things like that. Now, to me, hope is more like a mindset where you just are thinking so positively about the future that almost you manifest it. You're just constantly thinking positive. And if you don't have hope, you don't have anything. And you have to be very courageous to have hope.

Darrin Godin: Yes, you do. What is your message for others today who may be facing cancer or have a loved one who has cancer? What is your message to them today?

Heidi Paolone: I would say that you have to let people in, and you have to be vulnerable, and you have to know that you're not alone. It scares me the statistics that it's one in three right now, but you're not alone. There's no right and there's no wrong way to do this. And you don't have to decide everything today. Things can wait. You can dissect things down a little bit and be involved in your care and trust your doctor. And the other thing I want to say is cancer is not always about you, the patient. It's about the people around you too. And I think sometimes we forget that and we're so consumed with I have cancer. But it is hard on your family. It's hard on your friends, and not everybody always knows what to say or do to help you. So you have to be a little bit forgiving of people too and help them, tell them, talk to them, and ask for help.

Darrin Godin: Heidi, can you say more about that? I think that's a really good point. What does that mean? If the people around you may not understand what you have or what you're going through or know the right words to say to you, help us. How can those of us who might be supporting someone else be a better support?

Heidi Paolone: I think in my experience, a lot of people withdraw because they don't know what to say to you. I would rather somebody just, if they can't talk to me, just text me thinking about you, but don't go away. I think people get scared. Nothing you can say is going to be wrong. This person has been told the worst possible thing. In my experience, nothing would be worse to me of being told I have cancer than if my children had cancer to me. So I just think that you have to know that person and not be forceful, but don't give up.

Just because that person acts like they don't want your help or is acting tough, you can't give up. You have to just keep... Unfortunately, modern technology with texting, you can at least text or be old fashion and write a letter. People might not be ready for that face-to-face or phone call. It's okay, but I wouldn't just walk away and act like it's not there because I know who gave up on me and I know who didn't. And I don't know how you fix that later. You can forgive people and you can understand, but it's hurtful.

Darrin Godin: Yeah. So I hear you saying continue to be present in whatever being present needs to look like for the person who's been diagnosed, maybe they need a little space, but don't ghost them. Still let them know you're thinking about them. Be present when they welcome you in those sort of things but don't disappear.

Heidi Paolone: And you can help people without directly helping them. I had one girlfriend. She made my son's lunch every day. Every day she sent her son to school with a sack lunch for my son, and she didn't have to talk. She didn't have to... That was huge. And then I had another friend that would drop Starbucks off for me once a week. She didn't even ring the doorbell. She just left it. It is very hard, and I get it. I understand it. I have a lot of people asking me, "What should I say?" There's no right thing to say. You just have to be there. And sometimes just be quiet. Just sit next to them and don't say anything at all but you're there.

Darrin Godin: You're there. Well, Heidi, thank you so much for sharing your inspiring story. Thanks for giving us these great words of wisdom. I encourage those who are listening to our podcast today to please go to the show notes. We'll have a link to the letter you wrote to yourself. It has so much more in there, and it really, really is informative and also helps us all get a glimpse into what you were feeling at the time and what you shared to help others. We hope others will take a look at that. Your experience is a powerful reminder that navigating a cancer journey requires more than just focusing on physical health.

At City of Hope Orange County, we offer renowned gynecologic oncology at Urogynecologic Care. But our comprehensive cancer care extends beyond advanced treatments and technology. We're here to support and heal the whole person, mind, body, and soul, from prevention and screenings into survivorship. When it comes to cancer, it's hope first. Visit cityofhope.org/oc to learn more, or you can call us at 883-334-673 Hope. That's 883-334-673. Thank you all for listening, and please join us next time on Talking Hope. Thank you so much, Heidi.

Heidi Paolone:
Thank you.