Ep 97: Pamela from T.E.A.L.
Fertility Forward Episode 97:
Knowledge is power, so listen to your body. Ovarian cancer, one of the many cancers plaguing our society, is often hard to diagnose because of its range of different signs, symptoms, and risk factors. Our guest today on the Fertility Forward podcast is Pamela Esposito-Amery, the co-founder, CEO, and board member of Tell Every Amazing Lady About Ovarian Cancer Louisa M. McGregor Ovarian Cancer Foundation also known as T.E.A.L.®. As you tune into the podcast today, you’ll hear from Pamela about how T.E.A.L.® came to be, why resources for ovarian cancer were limited, her sister’s journey, and much more. Make sure you don’t miss out. Tune in today!
Rena: Hi everyone. We are Rena and Dara and welcome to Fertility Forward. We are part of the wellness team at RMA of New York, a fertility clinic affiliated with Mount Sinai Hospital in New York City. Our Fertility Forward podcast brings together advice for medical professionals, mental health specialists, wellness experts, and patients, because knowledge is power and you are your own best advocate.
Dara: I am very excited to have a great guest on today's podcast. We have Pamela Esposito-Amery and she is the co-founder, CEO, and a board member of Tell Every Amazing Lady about Ovarian Cancer, Louisa M. McGregor Ovarian Cancer Foundation, which is also known as T.E.A.L. It's a non-profit foundation behind New York city's largest walk and run specifically for ovarian cancer. So Pamela, we're so thrilled to have you on today to hear more about what sounds to be quite an incredible foundation.
Pamela: Thank you so much for having us.
Rena: You know what I have to say, Pamela, I've heard about teal for years from Dr. Matthew Lederman at RMA who's super involved, but when I got the notification in my email, just prior to logging in that Tell Every Amazing Lady had joined your meeting, you know what? I never knew what T.E.A.L. stood for. So until the second reading your bio and you know, when I had been prepping for the podcast, so I love the acronym.
Pamela: Thank you. Yeah. I'll tell you a little bit about how that started. I think it's an interesting story where I can't take full credit for when we were starting the foundation, I was starting it with my sister and we found out that the color teal symbolized ovarian cancer, just like pink for breast cancer. And so we just kept trying to come up with something that was an acronym for teal. And we had so many different scenarios and my sister said, tell every amazing lady, but she still continued making a list and she was still going, going I'm like, why are you still looking? Like, that's it! That's the one. And even like, love even a whole day passed. And she was still like, no, I gotta, I'm like, no, that's it. That is the one we're sticking with that. So it just, it says it all. That's who we are.
Rena: I love that. Yeah.
Dara: Yeah. Who knew? I love that idea that it's not only the color to symbolize ovarian cancer, but also that it's a fun and easy and catchy acronym.
Pamela: Well, thank you.
Rena: So tell us, yeah. How you got started you and your sister, how you launched this, is this your full time thing, or this is something you do on the side. Tell us kind of everything.
Pamela: Yeah. So we have a long story, but for the sake of time, I'll wrap it up by saying, you know, in 2007, my sister was diagnosed with ovarian cancer and she was the type of person that went to all her doctor's appointments, did all her follow up, did what she was supposed to, and it was still caught in a late stage. So when that hit our family, we immediately got into action mode on, okay, what can we do here? And if this can happen to us, it can happen to anybody. We educated ourseves quickly about ovarian cancer and we sort of just threw ourselves in through her recovery too. And one time she was in the hospital and the very early surgeries she was having, I said, all right, when you get outta the hospital, why don't we go do one of those cancer walks, there must be an ovarian cancer walk somewhere in New York City. Let's just go attend one. And you know, now we're advocates for ovarian cancer. Let's do this. And we had a tough time finding resources. She couldn't find a support group that was all ovarian cancer women. She definitely could find cancer support groups, but not for women who had her cancer. And that was important to her. And I couldn't find a walk particularly just for ovarian cancer and the list goes on and on for all the resources she was looking for. We really couldn't find in the capital of the world where we live, the resources that she needed. So we really didn't plan to, you know, start what we did, but as we started a walk, so when we couldn't find a walk, we were like, okay, let's do this big event. And let's choose Prospect Park because we're from Brooklyn and let's do it in Brooklyn and keep our roots. And when we started planning that one walk, thousands of people were reaching out to us. Our, we couldn't even keep up with our emails. Families were coming to us saying, finally, there's a resource for me and you get it. You understand. We've been looking for you. And finally, finally, and you know, the ripple effect just happened. We were like, okay, this is bigger than us. This needs to be a foundation. Let's do this. And you know, the rest is really history, but we're still going in, to answer some more of your questions, we officially established our foundation in 2009. We've been around for about 14 years. This would've been our 14th anniversary of our walk, but after a two year hiatus with the pandemic, it's a little bit different. We'll talk about our event in a little bit, but we've really had to, you know, keep with the changing tides with all of the pandemic and everything that happened. And we have a full staff. So yes, we have multiple people on our staff, hundreds of volunteers, an internship program, a community center, and I can talk for hours. So I'll stop there.
Dara: No, we know we wanna hear.
Rena: That's incredible.
Dara: It's really surprising that there wasn't, you know, back in 2007, when you were looking for a walk or a place for, you know, to support that there wasn't anything. And why do you think that is perhaps, and also I would love to know, like, your mission and what you wanna achieve, what you are achieving, from this foundation?
Pamela: Yeah. We were really surprised too. We found some larger national organizations that were out there, but they really weren't doing any local work. And we felt that the local part of this disease was just missing and we just couldn't find it. So, you know, I'm not sure that there's an answer to it. Most of it is that this disease is always underfunded and not talked about enough and it still is in that situation. But I will say that, you know, I do feel like we can take credit for getting that conversation started with our name Tell Every Amazing Lady with the biggest walk that we created for many, many years. Thousands of people, huge public service campaigns that we've done all across New York City. And we have the only ovarian cancer community center that exists. We have a community center in Brooklyn for ovarian cancer patients. And so our mission has always been survivor support, which means it also is support for their caregivers, their families, anyone who's been impacted by it. Spreading awareness - first and foremost - part of everything that we do, sign symptoms, risk factors, and funding medical research. But this year in early 2022, we actually updated our mission statement and evolved it to a place where we've always been headed, but made it a little more official. And it's basically, we added wellness to our services. They always were there, we just never sort of had an in black and white in our mission statement and we enhanced everything to be more for all of women's health. So I'll emphasize that and say what I mean, where we've always reminded people about mammograms. We've always said, even at our center, we have a mammogram bus that comes every couple of months. We provide resources about genetics and different parts of, of family's health that are not just ovarian cancer. We've always been there for that. So now we just put a stamp on it by updating our mission statement and make that a little bit clearer and enhancing our programs for wellness as well. I mean, we do meditation on a weekly basis on zoom. It's free. So you can check out our website and take care of services like that, but we've always done programs like that.
Rena: Oh, wow. That's so impressive.
Dara: I mean, I know I saw, I saw that, that you do your weekly, it's like energy healing and meditation.
Rena: Dara and I definitely both love that.
Dara: I was like, Rena and I have to totally check that out. It's so up our alley.
Rena: So, I mean, how old was your sister when she got diagnosed?
Pamela: So 41, diagnosed and she passed at 45 leading behind two children. So it was, you know, it was her mission before she passed away that this foundation was her legacy and what was really important that it could happen to her, it could happen to anybody. She had all the symptoms, the risk factors we were not aware of. And, you know, unfortunately this happens to a lot of young women. A lot of people are under the belief that, you know, over 50 is when people should be concerned about this, but we have been doing this a long time and I've seen too many younger women also get it.
Dara: Is ovarian cancer easy to diagnose?
Pamela: No. So let's talk about those signs and symptoms and risk factors. So I'll use my sister as an example. We later found out that there was a little bit more of a history in our family than we believed. So most of us know that, you know, maybe our great grandparents and even grandparents’ generations, and a lot of cultures, sometimes don't talk about what someone had. They might say they had a women's disease, or they had cancer or the C word. And we found that some of that was going on in the family where there were some women that were not really sure what they had. Maybe they did have ovarian cancer, maybe it was breast cancer. So that was one thing. Plus we did have colon cancer and prostate cancer and a few others in the family. So we later learned after genetic counseling and screening that we did have some genetic predisposition. But the signs and symptoms that Louisa had were back pain. She had an old back injury. So she just kept thinking like, oh my back, injury's, you know, just acting up. So it kind of got blown off. She actually had other health conditions, very minor things that she'd have - some bloating or some pelvic pain. Again, kind of just attested it to something else that was going on and had gone to multiple doctors complaining about these things. So ovarian cancer mimics a lot of other conditions that could be really vague. The symptoms can be back pain, can be pelvic pain, abdominal pain, frequent urination, at times, trouble breathing, frequent fatigue, things that, you know, you're extra tired and not used to, but like you usually are. And there's no reason for it. The same with weight loss or weight gain. You're not on a diet. You're not changing how you eat, but you're fluctuating weight, either increasing or decreasing for no reason and gastrointestinal complaints, which she also had. You know, there could be nausea, indigestion or something. That's just, you know, you didn't eat something funny. You haven't had a tray of nachos or something to cause that, but these things are lasting for more than two weeks. And when they last for more than two weeks, you really should check with the doctor.
Dara: Oh wow. Like those symptoms do seem quite like they could be so many different things, irritable bowel syndrome.
Rena: And that's so frustrating that she went to so many doctors and it, it was ignored. I think, you know, this article just came out in the New York Times fairly recently about medical gaslighting. And you know, a lot of people have been talking about that recently. It's really become sort of a, a buzzy topic, which I think is super important to discuss.
Pamela: Absolutely. We hear from women all the time who, you know, this disease, it's very rare to be caught at stage one or two. It's usually caught at a late stage because those symptoms are hard to diagnose. And at times when the diagnosis or the symptoms happen, it could have been, there's some studies that also say the symptoms happen only in the later stages. And you may not have it in the early stages, but we still advocate to get to the doctor as soon as you might be having something like that. But usually it does take another opinion or a third opinion. It's really important for a woman to listen to her body. Those were even the words of my sister. She always said, you know, knowledge is power. Listen to your body. Her body was telling her something and it's back to our message of Tell Every Amazing Lady, these are the signs and symptoms really keep telling your doctor, tell your friends, get that message out there and don't take no for an answer. If you feel like something's wrong with your body, then, you know, go to see another doctor if they're not listening to you. It's so important, especially with a disease like this.
Rena: I couldn't agree more. And I think too, especially as women, and I know you said she had two children, I know myself, I often ignore everything because it's just, it's inconvenient to go to the doctor. It's disruptive to my work days. It's disruptive to my schedule. So I'll ignore, ignore, ignore until something becomes so bad that I can't ignore it. And I think, you know, women, especially, that's what we tend to do because we're busy and it's inconvenient. And, you know, dealing with health can be really stressful. You know, obviously in my field and, you know, dealing with infertility, all the appointments, everything it's very disruptive and stressful. And I think as you said, you know, I love every point that you made. You know, we have to advocate for ourselves, get a second opinion, get a third opinion. You know, I think a lot of times people feel very disloyal or their doctor might be upset if they found out that they went to get another opinion, but it's what you have to do. You know, we are our own best advocate. I think that's in our opening to our podcast is you are your own best advocate. And that is definitely true.
Pamela: Absolutely. I want to address the, the screenings for it too, though. So if somebody does get to the doctor and they say, you know, okay, maybe you do have signs and symptoms. What are we gonna do about that? That's where there's a lot of limitations and we still really need funding for research. So, you know, I'm high risk. I had a sister, a family history. So what did I do for many years? I would, every six months to a year with my doctor's guidance, I'd work really closely with a gynecologist-oncologist, not just a regular gynecologist because I was higher risk. And, you know, they took that seriously. And I found a good one who would listen to me and we would do things like a CA-125 blood test and a pelvic rectal exam and a transvaginal ultrasound. Now those three tests you can request, but they absolutely can still miss it. Even though I'm educated, on top of it, working with a gynecologist- oncologist, I can still go for those three tests. There is no screening test for ovarian cancer. So that's a really important message and why this disease is so important for women to talk about. Even with everything that I just said, there's that shock value. I'm sure jaws are dropping. And I hope they are because we need to fix this. We need a screening test. We need better resources for this disease.
Dara: I also think that, you know, doctors should be, I mean, I wonder, I'm sure they're learning in, you know, school. Okay. These are some signs and symptoms, but I really do think the idea of prioritizing, maybe this needs to be a discussion for any woman coming in for their annual, granted, I know I read on your site that, you know, a pap smear doesn't detect, it's not a good screening tool to detect ovarian cancer, but perhaps educating patients on, you know, these are specific signs and symptoms that can be related to, you know, so if you do experience this, these are the next steps that you can take to see.
Pamela: Absolutely. We would love that. We're advocating for that and I think it's just, it's an entire system-wide change, but there are some doctors who, you know, do that and they're attentive to it. And there's some that, you know, this is a, a big battle that we have that we're trying to fight. And it's really important. We completely agree with you.
Dara: I think it's great. I was also really impressed going on your site and seeing that you've created these awareness cards in multiple languages. So tell everyone kind of what that is and how they can have access to it.
Pamela: Yeah, absolutely. So on our website, telleveryamazinglady.org, there's a whole section on facts and risk factors and things that you might wanna learn about ovarian cancer. And especially because we're based in New York City, even though we are a national organization, we do provide resources all across the country. In New York CIty, there's so many languages we don't even have them all, but we have about 11 languages available that list out in a PDF format, or even in a printed format. We can, you know, work with anybody who's interested in also having it sent to them, but it has signs, symptoms, risk factors, and information that can really help you. We do a lot of outreach in the public arena. We’re at health fairs, churches, synagogues, you name it. If there's an event going on, we try to have a table there or be a part of it in some way. And that's why, you know, those different languages are important. We wanna engage with the public and give them the resources that they need or else, you know, what's the point? They don't even understand what we're saying. So that was really important to us.
Rena: That's incredible. And so in terms of the research and funding to improve the screening process, how far out are we? You, us, everyone, women, you know, medical community from getting there?
Pamela: Yeah. I mean, I'm not a scientist, I'm not a doctor. We do have a scientific advisory board. And what I will say is when I started doing this to now, I do see a difference and I am really optimistic on medical research. There are some amazing breakthroughs happening in all of cancer. You know, there are amazing clinical trials and there are some statistics to say that women are living longer when they get the disease. So there unfortunately is usually about a five-year survival rate after a diagnosis, depending on what stage you're at, but that's sort of an average marker that's given, which is, you know, terrible when someone is diagnosed, to hear that. But we do see that they are living longer, you know, longer might be six months. It might be a few months. It might be a year, but we are seeing, you know, improvements on the quality of even the treatment that they're getting. They can live a better life. They're not as sick again. It depends for everybody's different, there's different cases and different scenarios, but I am very optimistic on where research is headed. We definitely still just need more of it and more funding
Dara: Which is a great segue into, you know, I think it's great. Not only that you have the resources, but you're also promoting your organization and you have lots of events and there's an upcoming event that I would love for you to share with our listeners that people can be involved in and help out in.
Pamela: Great. Thank you. So I was saying before, you know, we've been doing a walk-run for 14 years now. And so over the last two years, it's been virtual. We used to do them in person in many different cities across the country, actually. And they're called the T.E.A.L. Walk and we, for this year, we're back in person in Prospect Park. We're also, we're just back in Litchfield, Connecticut last weekend. And we're back a little bit in Savannah, Georgia, but everything is a little different. So I'll explain. We had a walk in Litchfield, Connecticut last week. So if anyone's in the Connecticut area, you still can check out our website and still support that event. It was called the Litchfield T.E.A.L. Walk. And the one happening in New York City in Brooklyn in Prospect Park is not a physical walk. There's not gonna be a start line or finish line, but you can participate virtually. But what it is is a T.E.A.L. celebration and women's health expo. We put a little spin on it. We wanna come back and celebrate that we're back. So there's ways that you can sign up to have an all access package or a survivor experience. And what that means is some of them have different passes where you can do meditation, Tai Chi, a survivor celebration. Plus there's gonna be a health fair expo available to the public. So check out our website, telleveryamazinglady.org. It's our feature event. It's Saturday, September 10th in Prospect Park. And even if you can't attend or you don't live in the area, you can walk virtually or participate in some other way that makes sense for you. And we have resources on other events that are happening. Some of them are free throughout the month because National Ovarian Cancer Awareness Month is here. That's why it's all happening now. And that weekly meditation is, you know, another experience that we have every Wednesday if you can't make any of the other events,
Rena: That's amazing. I'm so happy that you're coming back and also sort of expanding what you're doing. Really incredible.
Pamela: We're trying. We're trying to be there for everybody in some way. You know, it's not the same, it's gonna be a different event, but you know, we wanna celebrate that we're back and you know, our resources are still here and let everybody know that we're available.
Dara: I think that's great. And I wanted to add, it's a walk slash run. So for someone like me, myself, I’ll walk and someone like Rena, who's the runner of the group. It's great that you, you know, over the years have also had a, a run as well with it.
Pamela: Yeah, absolutely. So anybody who's interested in that should sign up virtually. It is a virtual walk or run, but your preference and you can support the event and you get a page where you can even talk about your story or upload a photo. There's team capabilities, if you wanna set up a team. So there should be something for everybody and everything is very family friendly as well.
Rena: That's amazing. I mean, I think this sort of community element of this too, is so important, you know, creating this village, you know, it's like infertility, it's the club you never wanted to join, but I would imagine it has the best members and a really supportive group of people just being there for one another. And you know, you can have nothing else in common with somebody, but to have, this is a very strong bond.
Dara: And you're passing on your sister's legacy, like, how unbelievable that you're dedicating so much of your time and your heart and your passion in honor of your sister.
Rena: Yeah. That's beautiful.
Pamela: Thank you. Yeah. For the first couple of years of our foundation, she did help us start it. So she got to see a lot of the roots and the growth and help us out. And so, yeah, we're just continuing her vision really, and what she wanted.
Rena: That's amazing. Really, really inspirational.
Dara: So now we know how to get to your website. Is there an Instagram account that we can also check out?
Pamela: Absolutely. So we're @tealwalk on Twitter and Instagram and you can find us Tell Every Amazing Lady on Facebook or our website. We're on TikTok too. We just joined TikTok. You can find us that way as well.
Rena: Oh! That's very current of you!
Pamela: We’re trying.
Rena: I'm the only holdout of TikTok. I've never even been on. Which I don't know if that just makes me old or resistant to change or what, but for T.E.A.L., I willl go on TikTok. You heard it here - I will go on TikTok for T.E.A.L.
Pamela: Yay! We hope to see you there.
Dara: Well, Pamela, thanks so much for being on today and how we like to round out our podcast session is to share with our listeners some daily gratitude. So Pamela, what are you grateful for today?
Pamela: I'm definitely grateful today for the team that is our staff, our interns, and our volunteers cause we're so close to our events and we're all working so, so hard and everyone is so passionate and committed. We could never do what we do without the team of support that we have.
Dara: How beautiful. So nice. Rena?
Rena: I will say, gosh, I feel like I always say the same thing, but I kind of just always get these feelings when we do these interviews. You know, I'm super grateful to meet someone else who has turned a life experience into filling a gap. One of the things I love about our podcast, and I've said this many times, is, you know, we meet other women who have found a gap in something and then not been a victim, but said, how am I gonna change this? Okay, no one's done it? I'm gonna do it. And so I'm so grateful to women like you who are working to make the world a better place, working to make a difference to other people. I think it's truly incredible. I think your foundation is, is amazing. And it's so lovely to finally meet you after all these years of hearing about teal from Dr. Lederman.
Pamela: Thank you
Dara: Lots to be grateful for, but since we're heading into September, I'm grateful for the change of seasons. Definitely going into September, it's also the start for many people - school. And so I'm grateful for education and education, not only for, you know, the next generation, but education for all age groups and look at how much we've been educated today on such an amazing cause and organization. I love learning and I'm grateful to have learned today. So thanks so much Pamela, for having you on and we are very excited for September 10th.
Pamela: Thank you. Thanks so much for supporting us and getting our word out there. We appreciate it.
Dara: Thank you so much for listening today and always remember: practice gratitude, give a little love to someone else and yourself. And remember you are not alone. Find us on Instagram @fertility_forward and if you're looking for more support, visit us www.rmany.com and tune in next week for more Fertility Forward.