[00:00:00] Adam Walker: Support for the Real Pink podcast comes from Merck.
From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
Welcome to another powerful episode of the Komen Health Equity Revolution podcast series. Each month we invite patients, community organizations, healthcare providers, researchers, and policy advocates to spark conversations about strategies and solutions that drive the health equity revolution forward for multiple populations experiencing breast health inequity.
Living with metastatic breast cancer, MBC can mean facing complex emotions. For many dealing with stage four breast cancer, the weight of the diagnosis brings a range of feelings from fear and uncertainty to moments of resilience and power. One of the most powerful among the spectrum of emotions is gratitude, and this holiday season two members of Komen’s MBC steering committee, Julia Hughes and Phyllis Esposito, are here to talk about what gratitude looks like for them in the face of MBC.
Julia and Phyllis, welcome to the show. Well, this is an exciting topic. Gratitude is an exciting topic, and I’m thankful to get to talk about it. Julia, let’s start with you. I understand that when you were first diagnosed with metastatic breast cancer, your doctors estimated that you had six months to live.
Can you tell our listeners how long ago it was that you were given that prognosis and what it feels like to still be here with your family today?
[00:01:45] Julia Hughes: Well, that occurred back in 2015. So yeah, I was told I had six months to live. And it’s nearly nine and a half years ago. And they said, get your affairs in order.
Take that final trip. Just, yeah. Look in the hospice. Make sure you have your will. I was 45 years old. So imagine the ultimate shock and awe, involved in my career, involved in extended education and all the things with young children or middle school, high school kids. And, so yeah, it was a shock and awe to say the least.
[00:02:31] Adam Walker: Wow. That is, wild. so Phyllis, to you, I understand that your diagnosis was more recent than Julia’s. Can you tell our listeners a little about your diagnosis and the impact it had on you once you received that news?
[00:02:46] Phyllis Esposito: Okay. well, I was first diagnosed with, stage 2A cancer probably four years ago and got the treatment. Could have called myself a cancer survivor or survived the treatments, the initial one. Moved across country from the Midwest to the West Coast. Started feeling not so well, so this is three years in or after the initial diagnosis. Went in for a medical visit when I got all settled in here where I’m living now.
And was told that I had metastatic breast cancer, that my breast cancer had spread, so I didn’t make it to the fifth year mark. To say the initial, information impact it had on me was, wow. It was not what I was expecting. I thought that, being so close to five years that I probably make that five year mark.
But I have to be honest, when, you get a diagnosis such as this, there were many things that kind of went through my mind in terms of what I wanted to do and what I could do. And I had to come to the realization that. I’m going to get up and I’m going to go to work. They have a brand new job. My kids are good. My spouse is good. And we’ll see where this takes me next. While it was shocking, overwhelming, and I was a bit sad, I had to realize that I got to get up and see what’s next and that I couldn’t give up. I think that’s probably the most profound impact that it’s had on me. It’s just, sharpening and giving me clarity around what do I do next and what do I do each day.
[00:04:22] Adam Walker: I love that. I love that. So, today we’re talking about gratitude and what it looks like in the face of MBC. I’m sure that it’s not the leading emotion that you feel every single day while living with stage four cancer. but the two of you are great examples of living with gratitude through action.
I’m excited to share that with our audience today. Julia, can you talk to me about the changes you’ve seen over the last decade since your diagnosis in regards to treatment and research?
[00:04:53] Julia Hughes: Yes. I’ve been amazed at all of the changes and the advancements that has occurred throughout my life. The entire process, not just technology and machinery and all the, those things, but the addition of new medications, alternative medications, I don’t think I would have had the same initial diagnosis slash outcome that I had 10 years ago.
I think they would have presented it in a more hopeful way and not given me such a quick expiration date. So I think that the new things that they have now, and the new discussions and platforms and programs have really helped get that initiative out there for, not just the quality of care, but having different things available for people, and doctors being more aware, and the research community being more aware.
And, money is being raised specifically for metastatic breast cancer, whereas it wasn’t even, on the radar, so to speak, for some weird reason it wasn’t even there. And a lot of, exciting things happened.
[00:06:13] Adam Walker: I feel like MBC has gotten a lot more focus, and rightly in the last, I don’t know, several years. And I love that we’re, calling more attention to it, we’re paying more attention, and supporting, that community. And breast cancer research in general has been, come so far, like you said, in the last 10 years. Also Phyllis, saw video about the many emotions of MBC and you were representing the word powerful.
What you said was so impactful. I’d love for you to share a little bit about discovering your new sense of strength with us.
[00:06:49] Phyllis Esposito: When I got this second diagnosis or the diagnosis of MBC, I was gifted with a book by Audre Lorde and Audre Lorde, the black female poet had breast cancer many, years ago and wrote
very passionately about what her experience was. And there’s a piece in her book where she says that breast cancer doesn’t define you and that when you’re given that diagnosis, it how you manage that journey represents how you manage other challenges in your life. So don’t let breast cancer necessarily define you and that just resonated with me.
It’s like I’ve had other challenges in my life. They haven’t defined me. They’ve been an extra layer to who I am. But it’s not the only thing that I am or the only way I need to be. So I think in finding that new sense of strength, it goes back to what I said earlier, having a bit of clarity about who you are, how I spend my time, where I spend my time, what matters most to me gives me strength, which seems probably to be a bit odd because with the diagnosis that can feel a lot of unknowns.
I have such clarity in this moment and all the things that I do. And I’m not, trying to sugar coat it and say that things can’t be bad or rough, but there’s, just something else. So whatever is bringing forth this new sense of strength and energy that I have makes me enter and interact in the world differently than I probably would have done three years ago.
And I think part of that root of that is in what I was describing in what Audre Lorde wrote.
[00:08:31] Adam Walker: I love that. And I love that you mentioned that, you’re not defined by your diagnosis. And I think, I’ve heard a lot of guests on
the show talk about that. And I think it’s so important that, you are, you’re yourself and your diagnosis is a part of your journey, right?
Okay. So Julia, I know you stepped into an advocacy role and you were disheartened to find that a lot of the landscape of the story was geared towards early stage breast cancer. So can you talk to us about your passion for MBC education and what you’re doing to change that landscape?
[00:09:06] Julia Hughes: Absolutely. I, also use what I’ve learned from my experience and hope and resilience and the idea of struggle in that, we are navigating something so huge, but we don’t necessarily have the tools given to us.
From the preexisting MBC community. So I felt the strong desire to bring those tools with me and try to change the landscape that I was seeing. early on, when I went to a common walk. They had these little boxes that you had to say if you were a survivor or if you were walking as a participant.
And as an MBC patient, I was surviving. I wasn’t done. I wasn’t going to ring a bell. I, wasn’t transitioning out. In fact, I was in my first six months of the diagnosis, presumably not even going to make it to a second walk. And I questioned that early on. I said, why don’t we have something that indicates those that are thriving or that are fighting or something?
What do you want to use? But to be a survivor, you have to have survived something I felt at that time. And I was shocked that there weren’t more resources that specifically addressed that group of women that were not, ringing the bell, so to speak, or not moving on from active treatment. So I’ve, shifted my perspective in the sense that I realized that like Phyllis, this doesn’t define me, but it’s a huge part of me.
It’s my everyday life. I have, I do have side effects from, Both the treatments, both just the breakdown, of my body, the side effect of medications. And I have all those things. So I have a choice to make. I could put on a little makeup and smile and have fun and enjoy life, whatever the days I may or may not have.
And thankfully God’s kept me around for nearly 10 years. So I figured there’s something to that. And I think sharing that with others, is giving that forward and giving that hope. And that fight that, in my struggle sharing that, with even other people’s struggles, you don’t have to struggle with MBC, but maybe it’s a chronic illness or a life being hard or another disorder or challenge that you may have and I do know that there’s just there was always this window of And so working with Komen MBC steering committee, that was a huge platform to be
able to share a lot of information and then going to my local chapter and, saying, knocking on doors and saying, wait, let’s highlight these MBC survivors and drivers.
I like the term thriving or thriving. a little more, but, I see the vantage point of saying you’re surviving it because there’s something powerful. I came up with Phyllis on that one, just using that power and just going in for that fight and just enjoying life and moving forward with that and sharing that with others.
I think being by yourself, being alone through this is not the way to make it. I think teaming up and sharing and collaborating.
[00:12:47] Adam Walker: Yeah, so important. So important. And you’re sharing today and we all very much appreciate that. So, Phyllis, I know, you’ve got a commitment to equity and that’s something that we’re all grateful for.
And you chose to participate in a clinical study during your breast cancer treatment to highlight the importance of such studies and to advocate for your community. Can you tell us some of the things you’re doing now to champion representation and equity in healthcare?
[00:13:15] Phyllis Esposito: Okay. I think what I took out of that clinical study was there were resources that were available that I didn’t have a clue and if I hadn’t been part of that clinical study, I wouldn’t have known that they were routine resource that everyone should have access to.
So that was like an aha moment. So in this moment, what part of what I’ve been trying to do is one, tell my story in as many places as possible because there’s still a lot of disparities in access to resources within black and brown communities. So that’s one and then working at the local level to say what are the local resources?
And that has been very challenging and inspiring at the same moment, because in a sense, I’m trying to model for myself because I’m new to this area and I’m trying to find the resources that I probably would have known more easily when I had the first diagnosis. So it’s like trying to navigate and what are the resources I think.
Trying again to model as I’m asking because one of the things I learned or took away from being on the clinical trial was asking may I ask why? Whatever it is. And it’s okay. And so I try to share that part of that story I come from a culture and a time when it was more polite for us to be seen but not heard and a family that didn’t question back.
It was just that whatever I received, I would do. And I think the message that I’m saying to the women that I’m connecting to and to their caregivers is that you can ask that question. Why it’s not that you’re pushing against what someone’s expertise is, but if you don’t have clarity or you don’t understand, or are you needing access to something, ask the question and stay on that question and ask that why.
Compiling local resources, speaking to younger groups of women to get, screening much earlier, than what’s been reported. And then also just like I said, sharing my story, my, I tried to live my, life as fully as possible. I still work full time and people are connecting in that way and saying, Hey, I have someone is at this point in the journey.
Would you mind having a conversation with them? And it’s let’s go have a walk. Let’s grab some tea. Let’s do some work and just being there to listen. So those are the early stages of some of the things that I’m trying to do, in addition to being a part of the, MBC group.
[00:15:53] Adam Walker: Oh, that’s great. That’s great. You’re doing some important work. That’s fantastic. So, I’d like to ask each of you, as far, for our final question here. What word of advice would you have for listeners about how to live with gratitude, particularly for those that might be struggling to do that right now?
[00:16:13] Julia Hughes: I would say that, have faith, have, I would go so far as to have faith in God and to be in the moment, be thankful, daily, show that gratitude for the little things and the big things. And, when you’re down or you’re struggling, think of, all the things that you have to be grateful for. Just recently, I had been thinking about all the birthdays I got to witness since my diagnosis.
I’ve had 10 more birthdays and 10 more anniversaries with my husband and I saw 10 more birthdays for each of my children. Which, that’s huge. I got to see both my kids graduate from high school, which wasn’t possible at the beginning. Saw them both graduate from college, which for me as a former school teacher, I, that was just my goal.
And I’ve even seen my husband graduate from college. I’m like, I just think, those, just really appreciating all those milestones in life that you may have missed. And maybe you would have zoomed by had you been living life the way you thought you were supposed to be living it. Just checking the blocks, you get the house and the picket fence and the dog or whatever.
It, you might have missed all those big moments because you would have taken them for granted. And, then I would also add, go easy on yourself because this is not for the faint of heart. These are serious problems. I know we make it look easy. Wait, we’re the troopers, but it’s day to day.
It’s not easy. We have, pills and, heating pads and perhaps diapers and ointments and all these things, hair loss and, pains and surgeries and all of this. But, I think you just, realizing that, just that you’re doing the best you can and keep doing the best you can and give yourself the grace to be the best you can and, and lean on friends and family and strangers if need be.
Help find answers to this and help find answers to the cure and to humanity I think it’s a bigger picture. It’s just all working together to solve problems and we can do life together So I know a lot of us a lot of note taking there a lot of words of wisdom.
[00:19:01] Adam Walker: ,Phyllis how about you? how would you suggest people live with gratitude?
[00:19:06] Phyllis Esposito: I will echo what Julia said that, to take, some time and recognize the small because gratitude is in both the small and the big things. And I think also in the recognition that there will be days that are hard, but if you own those days that are hard, know that joy will come in the morning.
And so just when I know that some days are really hard, I know. I’m going to get through this day and in the morning there will be joy. There may not be sun in Portland, and that wave, right?
[00:19:47] Adam Walker: That’s good. That’s good. Good advice. Great advice. Phyllis, Julia, so good to have you on the show. Thank you for sharing your stories.
Thank you for sharing and helping us with gratitude today. And thank you for joining us on another episode of the Komen Health Equity Revolution podcast series. We will continue to galvanize the breast cancer community to support multiple populations experiencing breast health inequities to advance and achieve breast health equity for all.
Because ending breast cancer needs all of us. To learn more about health equity at Susan G Komen, please visit Komen.org/health equity. And if you need resources and support, please contact the Komen Patient Care Center at 1 877 465 6636 or email helpline@komen.org. Thanks to Merck for supporting the RealPinkPodcast.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org. And for more on breast cancer, visit komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog, adamjwalker.com.