The Joyfulicity Podcast
Let's face it - in a world full of pain and troubles, couldn't we all use a little (or a lot) more joy? But how do we find it, keep it and share it? We'll dig in on that and explore it together here, on the Joyfulicity podcast. What is Joyfulicity? It's my made-up word for the art of living happy. I'm your host Laura Wakefield, a single mother of 9, certified midlife discovery life coach, writer, travel host and yoga and beach lover. Dedicated to helping others discover and maintain greater peace and personal empowerment. Dare to Dream - Plan to Play - Live to Learn. Here's to living life with a smile.
The Joyfulicity Podcast
Christine Benjamin - SHARE Cancer Support
This week on the podcast my special guest is Christine Benjamin - Vice President of education and patient support at SHARE Cancer Support. Christine candidly and compassionately shares with me her personal journey with breast cancer and the mission and offerings of the amazing organization she is a part of.
Tune in to learn more about the support that is available for those dealing with breast and gynecological cancers, and ways you can help as well. Check out the SHARE website: https://www.sharecancersupport.org
There are amazing people in this world that make a true difference in lifting the lives of others. Christine is one of those people and I'm honored to have her on the show.
Please like and subscribe here, and also visit my links page to see all of the other places we can connect. This is the hub for more information on my website, my coaching program, the podcast, social media and to subscribe to my newsletter. Hope to see you there soon! https://www.joyfulicity.com/links
Welcome to the Joy Felicity Podcast. I'm your host, Laura Wakefield, and it's my honor today to have Christine Benjamin on the show. Christine is Vice President of Patient Support at Share Cancer Support, a national nonprofit that offers empowerment and education to anyone who's been diagnosed with breast cancer or any gynecological cancer, and also offers education and outreach to the general public about these diseases as well. So there's very important work that Christine's doing over there. And I'm thrilled that she's been willing to come on the show today to talk about it. So welcome, Christine. Hi, Laura. Thank you so much for having me. It's great to have you here. So your journey actually began kind of in a personal way, correct? You were diagnosed with breast cancer yourself at age 37. Can you tell us a little bit more about that and how that impacted you?
SPEAKER_01:Yeah, absolutely. I was actually diagnosed the day before my 37th birthday. So I was technically still years old. And I was diagnosed with breast cancer. And I I sort of knew that it was coming because my grandmother, my paternal grandmother, died from breast cancer. One of my aunts died from breast cancer. Um, my cousin, my first cousin died of ovarian cancer three months before I was diagnosed. And so I sort of knew that this was gonna happen one day, and yet it was still a big surprise, right? So I just happened to find a lump one day and went and had a checked out, and it was cancerous. And because of my family history, I was advised to be sort of very aggressive with treatment, which is what I did. Um, we are a family that has a mutation in the BROCA gene. And, you know, you probably have heard a lot about the BRCA gene.
SPEAKER_00:A little bit, yeah. I did that's kind of come into the public attention in the last several years, but I don't know a lot about it. So anything you'd like to share, I'd be interested in hearing. Right.
SPEAKER_01:Okay. So breast cancer is, you know, pretty common among women. People think that if you if you don't have a family history, then you're really not at a great risk of developing breast cancer. And it's actually not true, right? You are at a greater risk if you do have a family history, but only about 10% of all breast cancer is related to a family history. Or, you know, that might translate into a mutation in the BRCA1 or two gene. We all have the gene. Some people have a mutation in that gene, which puts you at higher risk for developing breast ovarian and other cancers as well.
SPEAKER_00:So the same gene is related to all of those different cancers then. Yes.
SPEAKER_01:Yes. And so the mutation of the gene was discovered in about 1995. And this was around the time that my cousin was diagnosed with ovarian cancer. And, you know, people were just, even doctors were just starting to learn about it at that time. And my cousin and her family were approached by her doctors who suggested that she have, you know, genetic testing to find out if there's a mutation in this gene. And they decided not to do it because there was no protection in place for patients, right? So they were concerned about if they were found to have a mutation in this gene, which meant that they were at a very high risk of developing breast or ovarian cancer, then that would be held against them somehow, right? Like a pre-existing condition. Mm-hmm. With insurance or anything. Insurance, exactly. That's exactly it. They were concerned that they were going to be dropped from their insurance. And so they didn't, they didn't have it done. But then in 2000, when I was diagnosed, right? So now everyone has known about the mutation of the gene for about five years. Uh it was, it was being used more so in practice, and there were uh restrictions or safeguards in place so that patients wouldn't be penalized for having the gene, right? The mutation in the gene. And so um I was tested, I was genetically tested, obviously did have a mutation in the gene, and uh as a result of that, decided to have, you know, very aggressive treatment for my cancer. And, you know, clearly here I am, I survived, right? But in my family, you know, if you're diagnosed, the history has been that if you're diagnosed pre-menopausally with breathstrove bearing cancer, you don't survive. And I'm the only one that did survive. And so I felt sort of as a result of that, that you know, it was sort of my mission now to help others and to protect others. And I started with my family. So I I have a have a large extended family. My father was one of five. No, my father was one of seven. So lots of aunts and uncles and cousins.
SPEAKER_00:I have nine children myself. I'll just do you readily. Oh my goodness about big families.
SPEAKER_01:Yes. Oh wow, that's incredible. That's incredible. Well, it was really fun growing. Like we all grew up, you know, right very close to one another. So it was great having you know so many cousins and relatives around. Always something to do, always someone to hang out with. So my family, the entire extended family, became involved in a study through Memorial Song Kettering. And we were all able to be tested genetically. And then, you know, people were able to sort of figure out a path forward based on their, you know, the results of their own genetic testing.
SPEAKER_00:Is that typical if somebody in a family has it that the other family members will for certain, or not necessarily?
SPEAKER_01:That's a great question. So you have basically a 50-50 chance of inheriting it from your parent. And so, like, I have the I have a mutation of the gene, my sister does not. Interesting. Luck of the draw, I guess.
SPEAKER_00:Yeah. But if a family member does discover that they have it, it's probably in your best interest to also be tested so that you know.
SPEAKER_01:Yeah, but you know, not everyone is not everyone was willing to be tested, right? Because once you know, right, now what? Now what do you do with that information? Yeah. There are options, right? So one of my cousins, for example, she was tested. She tested positive for the mutation, and she decided to have prophylactic mastectomies. So she had bilateral mastectomy, she had both breasts removed, and then she had her children. She was married, she had her children, and then she had an oophorectomy, and she had her ovaries removed as well to prevent ovarian cancer.
SPEAKER_00:So she didn't have signs of the disease, just had the preventative. Well, that was an aggressive approach, but it sounds like in your family there's such a history. She thought it was a no-brainer. Yeah. Right.
SPEAKER_01:You know, given given the fact that everyone except me who was diagnosed premenopausal died from their disease. She just figured it was a no-brainer for her. Yeah. But it's still, you know, it's a it's an extreme option, right? And so some people, most people chose to be tested and some did not, and sort of waited until later and waited until their kids maybe grew up a little bit more, didn't want to have that knowledge. Yeah.
SPEAKER_00:It's I can understand that because, like you said, once you know there's all this fear that suddenly is introduced into your life, and where do you go with that? What do you do with it? That's right. That's inconsistent. That's a good question.
SPEAKER_01:And how does that play into sort of you know, quote unquote, like a normal life, right? Or a normal sort of progression of things. Right. Even meeting someone and becoming involved. And do you disclose the information? Oh gosh, I hadn't thought of that. That's true. Lots of things to think about.
SPEAKER_00:Well, so how did this lead you? How did you get involved with Cher? Tell me about that.
SPEAKER_01:Yeah. So before I was diagnosed, I was a social worker and worked with uh children in the foster care system. And I was a therapist for many, many years working with children who were sexually abused in their families. And so I had sort of the therapeutic background. Um, but since my diagnosis, I was I started volunteering with other organizations and served on the board of directors of other breast cancer organizations. And someone that I knew was working at CHARE and asked if I could come in to provide some training for the staff. And so I partnered with a woman. My partner is a woman, and they asked for me to come in to provide some training on LGBTQ issues for the staff. And I was really at that point, so maybe I've been working in sort of the breast cancer field and volunteering and doing my photography, which I'll tell you about. Um, I was really trying to transition out of breast cancer and thinking, you know. Yeah, that's not my whole life.
SPEAKER_00:Maybe I should, yeah.
SPEAKER_01:Yeah, maybe I've had enough. Like maybe I could find a job that's a little has maybe a little more joy in it. Right. And they couldn't find anyone else to do it. And I said, all right, you know, okay, I'll just I'll come and do it. I did it and I fell in love with the organization.
SPEAKER_02:Yeah.
SPEAKER_01:And I could not believe the amount of work, and the staff was much smaller than, but the the amount of work and the quality of service that this very small organization was able to provide was astounding to me. And at that time, I had a lot of experience with metastatic breast cancer, which is stage four breast cancer, which is not curable, right? It's treatable, but not curable. That's what my aunt died of, that's what my grandmother died of. Um, many of my friends. I made friends in the breast cancer community. So 10 years, lost a lot of friends to metastatic breast cancer. So when I got to share, they had a position, they had a very part-time position available as the metastatic breast cancer coordinator or something. And it was two days a week. And I'm like, you know, all right, let me, I can do this for two days a week. Or a year later, my boss retired. I got a promotion, and I've been there ever since and just kind of, you know, worked to really focus on and develop the metastatic breast cancer program. Um, and then sort of expanded, you know, to to early stage. And now I oversee all of our cancers, all the support services, all the education in English and Spanish. And we're just developing a Chinese language program as well.
SPEAKER_00:Wow. Wow. So you went in to give a seminar and never left. Here I am, right, exactly. It sounds like it's something that's so so passion-driven, this type of work, that you directly are impacting people that are going through something that you've been through so you understand them and what they need. And I just find that so admirable. The people that are able to take challenges that they've been through and turn them into good for others. I that's something that I just deeply admire. And I love that kind of work. Um, so tell me what kinds of things does Cher offer to people? If somebody comes to you, what will they find there?
SPEAKER_01:So I think our bread and butter, maybe what we do best, um, are our helplines. So if someone can call in to any of our disease areas, right? So we have a helpline for early breast cancer, metastatic breast cancer, ovarian cancer, uterine, and cerebral cancer. So someone can call in and speak to someone who has had a diagnosis in any one of those cancer areas. And so, you know, they're trained volunteers. Um, they have been trained to provide support and information and really work to empower people so that they are asking the right questions. They are getting the best care that they could get. And, you know, hopefully that always leads to improved outcomes for people.
SPEAKER_00:I imagine that's quite an overwhelming moment that you come home from the doctor with a cancer diagnosis, and then you just sit a little frozen for a while, I would think, not knowing what to do. So, what a blessing to be able to talk to someone who's been through it and has advice for you. Because I think I would think that there's just so many things going on in your mind and your heart that you don't even know how to sort that out.
SPEAKER_01:Absolutely. Absolutely. And it's literally like they're speaking a foreign language. Right. All right. You know, the terminology and um the amount of information that's given to you in that moment. And it is very, very overwhelming because you can only really think about the fact that you're going to die, whether whether or not that's true, right? That's where we go to. You know, we think cancer, you think death, yes, um, become overwhelmed with fear and anxiety. And at the same time, you know, you have to sort of take in all of this information and begin to make, you know, informed treatment decisions with your doctor. So I just had a cousin. Um, so you know, my diagnosis now was years ago, right? And unfortunately, I just had a a cousin of mine, a close cousin, just diagnosed with melanoma. And he and he was saying that, you know, after about five minutes, the doctor was speaking with him. He said, Let me know when you start speaking English, and then maybe we can have a conversation. Like he was just so overwhelmed by all the different terminology, and it literally is like hearing a different language. So it is very overwhelming. And I think it's it's it's so helpful to have someone else on the other end of that phone who understands what it's like to get that diagnosis and can really help you sort sort through all the emotions and the information and help you to prepare next steps, questions to ask your doctors.
SPEAKER_00:Well, it could be because sometimes you have to make decisions fairly quickly, correct? Like sometimes you don't have months and months to mull things over and true, yeah. And there's a lot to do.
SPEAKER_01:So they usually like you to like between the day that you're diagnosed and like the time that treatment occurs, whether that's surgery or chemotherapy, maybe it's about a month or so. They don't really like to go over that. And usually there's a lot of doctor's appointments in between, right? They they want you to have a bunch of scans to see if it's spread anywhere else. There's biopsies, there's all kinds of appointments. Um, so it is a lot to do, and it becomes your new full-time job.
SPEAKER_00:Yeah, the rest of your life, how do you manage the rest of your life? It didn't about cancer, then, correct? Right.
SPEAKER_01:And then, you know, insurance, just not easy, and you have to manage your insurance. And if you're lucky enough to have insurance, not everyone is insured. Yeah. So yes, it does definitely take over.
SPEAKER_00:I've had family members and close friends who've gone through, I have not dealt with cancer myself or in my immediate family, but I have had family members and close friends who have gone through it. And it really is true. Like their whole lives are just they go to the doctor, and then the next thing they know, their entire life is consumed by their diagnosis and their treatment. And I just can't even imagine what that would feel like. Tell me something about the others in the patient's life. Because, like when you know someone who's had a diagnosis like this, you want to help, you want to support, but you you really don't what what do you say? You know what, where do the people in their lives that want to be helpful go to learn what the appropriate responses are? Because you don't want to say the wrong thing and make matters worse. It's a tough thing.
SPEAKER_01:That's a great question. Before I hop into that question, can I backtrack a little bit? Yeah, absolutely. Because you you asked me about share and what share does. And I just talked about like one little tiny little aspect here. And I just want to make certain that I have the opportunity to mention that, you know, in addition to uh the helplines that we have, we have numerous support groups, probably 40 support groups across our cancer areas, educational programs, probably 150 educational programs each year in English and Spanish, and soon to be Chinese as well. Um podcasts for early stage breast cancer and metastatic breast cancer, and outreach to the general population, right? Especially for in under-resourced communities. So we go out like boots on the ground and talk to people about the signs and symptoms of the cancers that we serve. Um, you know, in in gynecologic cancers, for example, right, you know, women, people, we have symptoms, you know, all women have symptoms sometimes, right? Like bloating or, you know, discomfort. And those symptoms can be related in some cases, right, to a cancer diagnosis. And so we want to make certain that people understand that if you have those symptoms, and as people, we will at some point in our lives, right? But if they persist, persist for a certain period of time, that you know, you really need to have them checked out. And so, you know, we're we're out educating people about you know what to look for and making certain that you are in charge of your own health, right? And your health care. And make certain that you know you're being heard, even if you feel like you're being dismissed, go to a different doctor. We know our bodies the best, right? And sometimes we really have to advocate for ourselves. So you ask a great question about, you know, how can other people be helpful? And, you know, what about the caregivers? I think it's uh I think it's harder to be a caregiver sometimes than it is to be a patient. But I, you know, I think for those of us who have been diagnosed, right, and now they're like, there are videos about this, but there are people, I do believe in the goodness of people, right? And I do believe that people want to help, and I believe in the best of people.
SPEAKER_00:And sometimes people say things that aren't particularly helpful, and now they're all what you're afraid of when you're stepping into this is I don't want to be that, I don't want to say the wrong thing. So guide us.
SPEAKER_01:And there are all these funny, you know, kind of videos on YouTube, right? Like stupid things that people say the cancer patients, things like that. Um, but I think for the most part, you know, people just want to feel heard and understood, even if you can't understand it from a personal perspective, right? Sure. Um, so people have said things like, well, you know, at least you're getting a 3D boob job. No, you know, it's it's not helpful. Okay, right. Like, you know, yes, many people, you know, have implants or you know, have to get the breast reduction on one side to sort of match the reconstruction on the other side, but it's it's never, it's usually never better than the original, right? Um, and you make the best of it, of course, but you know, we don't view it like that. It's some people view it as, you know, an amputation. I mean, you're losing a body part. Yeah. And it could be very traumatic. It could be painful, it could cause some other issues, right? And so we never look at it as, you know, it's a free boob job, or you make the best of it, but you know, it it is a traumatic, it could be traumatic for many people. But I think for the most part, yeah, I think for the most part, you know, saying something like, you know, I'm really sorry to hear that you have to go through this. And, you know, I mean, you know, people all often say something like, you know, um, um, I'm here. If you need anything, let me know. But we're hesitant to reach out, right? Yeah, like you're hesitant to reach out. So I think it's kind of helpful. Like I had friends and family members, you know, drive me to treatment or, you know, come over and cook and things that I couldn't really do for myself at the time. So useful, helpful things. Um I heard some people talk about, you know, friends gave them a bunch of gift cards to local restaurants or um had a cleaning service come over and clean up the house and maybe do the laundry, um, child care, maybe help with child care, right? If if you had 11 children, if you were down and out for a time period, right? And you had pickups and drop-offs and school lunches to make. I mean, I don't know.
SPEAKER_00:So the practice the rest of life is going on and needs to be maintained, even though you're not capable of doing it. And that's and like you said, I think you are hesitant, no matter how dire your situation, you're hesitant to inconvenience people or reach out. So maybe we maybe be a little bit proactive and just showing up to do it, perhaps.
SPEAKER_01:Yeah, or you know, hey, I'm gonna drop something off for you, I'll leave it at the door. You don't have to entertain me. I don't need to come in, I'll let you know I've done it and exactly.
SPEAKER_00:Well, there was a a particular couple of programs before I jump into the photography, because I do want to talk about that. TNBC Impact Program. Yes. Tell me about that.
SPEAKER_01:Yes. Well, Laura, I wish this podcast was about three hours long. I could talk about this project for a long time. So there are all different subtypes of breast cancer, right? And TNBC is an acronym for triple negative breast cancer. It happens to be one of the one of the more aggressive forms of breast cancer, and it disproportionately affects the Black community.
unknown:Okay.
SPEAKER_01:I happen to also have uh TNBC diagnosis, triple negative breast cancer diagnosis. It also affects those with mutation in the BRACGene.
SPEAKER_02:Okay.
SPEAKER_01:The way that TNBC affects the Black community is very dire. And we say that there's a crisis in the Black community with triple negative breast cancer. So, in general, more white women are diagnosed with breast cancer. More black women die from breast cancer.
SPEAKER_02:Yeah.
SPEAKER_01:And more Black women are, you know, diagnosed with this incredibly aggressive form of breast cancer.
SPEAKER_00:And so what would you say are percentages of how it affects the different population? Oh, I knew you were gonna ask me that, and I don't. I should know, and I don't know. Oh, that's okay, but much more intensely in the black community.
SPEAKER_01:Yes. Yes. I think I think it's actually threefold. So I think um black women are affected threefold more than white women by triple negative breast cancer.
unknown:Yeah.
SPEAKER_00:So it's how well that how well known is that within the black community? Is that what your purpose is? Is some of that education?
SPEAKER_01:It's part of what we were trying to achieve with this project. Um, so we really wanted to understand the experience of a Black woman being diagnosed with TNBC and what it was like, what her experience was like, what it was like to engage with healthcare professionals, um, what was needed that maybe they didn't get. Um, what about information? How much did you know about TNBC going in? What were you told about triple negative breast cancer? What kind of support was there for you and your family, your friends? Um, and so we partnered with researchers out of the University of South Carolina, Dr. Tisha Felder and Dr. Dr. Lucy Ingram, who conducted very in-depth studies, interviews with 20 Black women who were diagnosed with either early stage or metastatic stage four, um, triple negative breast cancer. And they took all this information and analyzed it and came out with different recommendations and different themes that resulted from these interviews. And in June, um, Share Cancer Support hosted a conference called Getting Our Fair Share, a conference to end health disparities. And four of the women out of the 20 um participated in a panel discussion about what it was like for them to experience tribal negative breast cancer and what do they learn from it? What do they think needs to be done? And it was such an incredible, impactful panel. People in the audience were saying, you know, some kind of magic happened here today. I mean, it was heartbreaking experience in many ways. Yeah. Um, but so full of, you know, knowledge and learning and insight and wisdom and pain around the way they were treated, or the fact that someone had, you know, absolutely no support. The others had support from other people, and they were able to gather around her and give her and her family some support. And how you know people were treated by medical professionals, or they lacked information for them to make you know informed decisions. And it the and I had some of my staff, right? Some of some of my colleagues, so there were four of us from Share working on this project as well. And we were all so incredibly invested in working in the study, right? That if anyone was on vacation, like they would call into the meeting because they didn't want to miss anything. And uh it just had an immense impact on all of us, on the researchers, on you know, my team and my staff, the organization as a whole, and on the women that participated. And so we are we're just finalizing the white paper, right? We're finalizing the results, we're finalizing the findings, and we will publish that and disseminate that. And we're also working on a video to sort of bring in the experience of the women, and you know, you'll hear the researchers talk, and you'll see the women um participate in the panel and the conference. We think it's important work. Um, we think there are some solid findings and messages, and we're hoping that it's gonna be, you know, as impactful as it was for those who worked on it. We hope it's gonna be that impactful for those who see it and understand.
SPEAKER_00:That's amazing because education and awareness can truly save lives. I had never heard of TNBC before, and I imagine that a lot of people have not. And just also the disparity in the healthcare to shine a light on that so that people can start to even realize that that's true, because that's where the change begins, is people just recognizing the problem in the first place. And sounds like you had just a power panel there of people to help begin to, you know, educate people as to what's going on.
SPEAKER_01:We're white women, right? You and I are white women, and just the just because we're white women, there's a certain privilege that comes along with that, right? Um, you know, what what we've learned, one of the things that we've learned throughout this study, and one of the things that we all know is that you know, there is structural racism, and it's very alive and well, unfortunately, today. And to hear you know people's experience dealing with structural racism firsthand, it was was heartbreaking. Heartbreaking. I can imagine. And also powerful because these are some strong, amazing, incredible women who overcame lots of diversity, lots of barriers, lots of challenges to make certain that they were able to get the care that they needed when they needed it and from whom they needed it. And that's not easy to do.
SPEAKER_00:No, definitely not. This is a hard enough thing to go through when you have all of the resources and all of the support. Absolutely. You know, without that, I can't even imagine. And you know, we're talking a lot more, thankfully, finally in our society, about equality and about these things, but we don't always realize all the different layers of what that impacts, even down to something like getting adequate medical care that should be just something that's available to everyone. I just don't think that that we're as a society completely aware of the fact that that that's not always true for everybody. And that change desperately needs to be made.
SPEAKER_01:Far from the truth, unfortunately. Yeah. And it is a very racial issue. That's, you know, it also occurs because of ageism, right? And how people treat women who are very young, or women that are very old, or you know, people that are young or people that are old. You make judgments based on based on appearances or based on what you think, or your worldview, or your lens that probably not necessarily true, right?
SPEAKER_00:Yeah.
SPEAKER_01:And so it's a problem in healthcare for sure. And it does add to inequity in healthcare. It does add, it is a part of disparities in healthcare. And it's it's a crisis. It's a crisis.
SPEAKER_00:Because those kinds of personal opinions and personal judgments have no place in healthcare. Right. Absolutely not. Right. So to change topics just a little bit, I want to come back to what you were saying about, you know, kind of the joke that that somebody made about the free boob job, that sort of thing. But what I want to come back to is the emotional impact that this is having on somebody who's going through it. Because on top of the fear of death, like you talked about before, there are body changes that take place with chemotherapy, with mastectomy, all of that. And if I understand it correctly, you started using photography to try to kind of empower and overcome some of that body shaming or that insecurity. Tell me about that.
SPEAKER_01:Or so I was very, you know, I was relatively young, right? So I was now 37. I had bilateral mastectomy and I had my ovaries removed as well, right? So definite physical, outward, physical changes in my body and lots of you know internal changes as well. Right. And I started having bone issues, all that stuff. But I couldn't, I couldn't really accept my new body. And my body worked fine. I was still able to do everything that I did before. I'm a runner, I'm, you know, I'm athletic. And I was thankful that I was still able to, you know, like my body worked in very much the same way. But it was different, and it wasn't my body any longer. And someone suggested that, you know, maybe I take, I was studying photography, and my teacher suggested, you know, maybe you should take some self-portraits and see what that does. And I did. And I took, I took nude portraits. Just of yourself. Of myself. There's no, you know, no one else in the room. It was, it was just me. Um, I made them black and white. I used sort of dramatic lighting. And it was a shift in the way that I saw myself as a result of seeing those photographs. So the photographs were not, you know, yes, they were me, but in every day I'm not in black and white, and I'm not in beautiful lighting, right? So it was me, but it wasn't me. But it allowed my mind or my psyche to to just for a moment to just sort of see myself just a little bit differently. And I thought, you know, there is some beauty in that. It's not that I was beautiful, it was like it was a beautiful image. And also you could see the devastation of the scarring and all of that, but there was some kind of beauty to it as well, and it just shifted something for me. And I thought, if if it shifted something for me, I wonder if it would shift something for others too. And so I started talking to a friend about it. And this was, you know, we have friends and then we have breast cancer friends, right? So the friends that we meet also have breast cancer, right? So I went to a breast cancer friend and she's like, I'll I'll do it. And I think, you know, for her, it it did something as well. So I'm like, okay. And I started traveling all over the country, literally all over the country, um, making portraits of women who've had breast cancer. And it became almost like phototherapy. Yeah. All right, because before we started photo shoot, we would sit for like an hour maybe and just talk. And I am trained as a therapist, right? And so, you know, maybe it was a little therapeutic, but I tried to create an environment that was just one of total acceptance.
SPEAKER_02:Yeah.
SPEAKER_01:And so by the time we got to the chute, right, which is always a little awkward because okay, so now we're talking, we have our clothes on, like your clothes off and stand over there, right? But it was there was so much sort of acceptance and you know, bonding or camaraderie or understanding between us at that point that they felt totally accepted in that moment.
SPEAKER_00:Yeah.
SPEAKER_01:And then when they saw the photograph, maybe they saw something that was also beautiful, right? So acceptance and beauty. And you know, for some people, it just flipped that switch for them. Yeah. And it just made them feel better. Like, you know, was it a cure all? Like, did we all say, you know, okay, I'm gonna go model now for the swimsuit magazine? Um, but it was it was like a moment of acceptance.
SPEAKER_00:Well, women, I'm sure men too, but women definitely are so hard on themselves physically in the best of circumstances.
SPEAKER_01:Absolutely.
SPEAKER_00:You know, like I look back on myself in my 20s, I hated my body. Now I would love to have that body back, you know. If I could have that same body, I'd be thrilled. But right, right. Absolutely. You know, we have this perfectionistic standard that we're being expected to keep. And and we age, we go through surgeries, we get scars, we have all these things. And to come to that place of acceptance, I can imagine, is just such a beautiful release of all of that kind of self-hatred that you've been putting on yourself. And I can't, I think that's a such a beautiful mission. Are you still doing that?
SPEAKER_01:I haven't, I haven't done it in a while. I haven't done it in a while. It was also very emotional, right? So I took it then to sort of the next level and I started working with women who were diagnosed with metastatic disease. And metastatic breast cancer, you know, as I stated before, it's not curable. And the average lifespan maybe is about three years. Oh so with metastatic breast cancer, like early stage breast cancer, there are different subtypes. And some of the subtypes uh many people are able to live a very long time. And some of the subtypes maybe not so much. So I, you know, I knew this going in, right? And I was working with women who were diagnosed with metastatic disease, and we would do the it was sort of the same process. So we would sit and talk for a while before we started to, you know, before we started the shoot. And there was always something from that conversation that just really stuck with me. And so we would do the shoot, and then I would choose a photograph, and then whatever it was from that conversation, I would use that quote in the photograph. Right. But it was it was beautiful, but also devastatingly real and tragic. So I can I can give you an example. Yes, please. All right. So I was working with a woman. Um, she had early stage breast cancer first, and then it developed into late stage or metostatic breast cancer. She had bilateral mastectomy, so both breasts removed with no reconstruction. And she had two children. And her main concern was, you know, what was going to happen to her children. And she said, you know, I just, I hope that my parents will care for my children when I'm gone. And I photographed her in her in her daughter's bedroom. And she just she had underwear on. And it was kind of like, not like Victoria's Secret underwear, right? More, you know, like a younger girl would have, you know, like cotton with, you know, basic sort of cotton underwear. So it made her look a little cho like almost childish, right? Younger. And so here she is standing, so no breasts, no reconstruction in a lavender room that was clearly a child's room. And then those words, right? So poignant and heartbreaking and tragic and also, you know, very real and and hopefully beautiful as well. So you're so you're being sort of overwhelmed with beauty and sadness and devastation and the reality of this disease.
SPEAKER_00:Yeah. Yeah, that would that would be very draining, emotionally satisfying and fulfilling, but also draining, I would imagine. Hard, just yeah.
SPEAKER_01:Just a lot, a lot. But no regrets. I mean, you know, I I met beautiful, amazing people, and I know, and I was able to do that for them and for me. Yeah.
SPEAKER_00:That's a beautiful, it's a beautiful mission and a beautiful gift that you gave to those people through those images to just see the beauty that remained in them. Because really honestly, it sounds trite to say, but our beauty doesn't come from out here, it comes from inside. And you can see people of any age, any race, any anything that just have that beauty emanating out of them. And it's just wonderful when they're able to see it.
SPEAKER_02:Right.
SPEAKER_00:Because so often others looking at us can see it, but we can't, because of whatever conditioning we have about who we are and what we're supposed to be and what we wish we were. And just to have you shine a light on that for people. That's such a beautiful gift.
SPEAKER_01:You just hit it on the head, right? Because someone else can tell you you're beautiful, you're fine, you're, you know, you're perfect in the way you are. But if you don't feel it, right, you never take it in.
SPEAKER_00:Exactly. And you give that to them at a time when it would be understandable that they're not feeling beautiful. And just show them that you still are. The essence of you and your beauty is still here. Okay. So talk to me about prevention. Because, as you say, this disease is devastating. But I know that the earlier that it's these diseases, I guess the gynecological diseases as well, are quite devastating to people's lives no matter what the outcome turns out to be. What can we do to take care of ourselves in advance of a diagnosis to try to prevent this from happening?
SPEAKER_01:Also a big topic, prevention, right?
SPEAKER_00:Yeah, yeah.
SPEAKER_01:You know, I mean, you know, of course, there's screenings, right, for gynecologic cancers or screenings for breast cancer, and the those guidelines change sometimes and they get like a little confusing. And so, you know, I mean, I think I always talk to people about it's really just important to know you and your normal. Yeah. And if you sense a change, if you feel something that you haven't felt before, um, then have it checked out, you know. Unfortunately, in breast cancer, it's often without symptoms. Right. I, you know, I've I felt like a kind of an extreme fatigue, right? But it wasn't as though I couldn't function. Uh, you know, it's very athletic, but I I felt like like tired, like in my bones. That's how I described it at the time. No matter what I did, you know, if I didn't have a glass of wine the night before and I went to bed early and I carved up, you know, the next day, like on my bike ride, I was just a tired like I never experienced. Yeah. And I think that that was one of the signs. Like my body was fighting off cancer, you know, not diagnosed, right? So, like we have to know what's normal for us. And you know, it gets a little tricky with gynecologic cancers because we're women, we have bloating, we have uncomfortableness. We're a mess on the best of days, right? Right. And so, but you know, if those symptoms persist, it's important to have them checked out. It's important to be your own best advocate because, you know, I've heard stories where women have gone to three different doctors and have and everyone said, You're fine, you know, you're stressed out, you're you don't exercise enough, and you know, really it's cancer. So being our own best advocate, we know our bodies the best. You know, there are other things that we, you know, we should all try to do what we know is best for us, right? Like try to exercise a little bit, you know, try to eat, try to eat well, but if you don't, that doesn't mean that you're gonna get cancer. You know, I eat ice cream all the time. No, I you know, we have to enjoy life, right? You have to enjoy life. Like we, you know, we try to, we try to make good choices, right? Just for overall health, right? For to build your immune system, we try to eat fruits and vegetables. We and I think that's always good to think about sort of overall all health. Yeah, right. What's gonna nourish your body? What's gonna keep your body as healthy as it could be? But even if you do that, even if you're a vegan or even if you eat kale 14 times a day, right? Like, you know, cancer is random.
SPEAKER_00:Yeah.
SPEAKER_01:And it, you know, things happen.
SPEAKER_00:So get your screenings. I know that as women, like me as a mom, you we get busy in our lives. We're caregivers and nurturers of others quite often in various capacities, and we forget sometimes to exercise that same care, nurturing over ourselves and taking care of us. And I think that that makes such a huge difference. You know, getting we would never miss a doctor's appointment for our child, maybe, but we haven't been in for our annual screening.
SPEAKER_01:It's true, right? Yeah. I try to schedule my stuff around my birthday because then it's unavoidable.
SPEAKER_00:Right.
SPEAKER_01:Uh like you know, always I'm always happy for another year. You know, because I because I was diagnosed in my 30s. I just I just turned 60. And although aging can be horrifying, like I'll take it. I'll take it and I'll you know, I'll go and I'll do what I have to do.
SPEAKER_00:Yeah, I'm 55, and aging can be a little daunting. And I know your risk factors continue to increase as you get older, also, for all of these things. And so it becomes even more important to be mindful and be aware and paying attention to your body and nurturing it and loving it the way that you should.
SPEAKER_01:Being kind, right, and being kind and gentle here to yourself, right? Because we can all get so down on our bodies and you know what we look like and kindness. And would you ever think about someone else? Would you ever think about one of your children, right? Or things that go through your mind about yourself, would you ever say that to someone else? No, never. We're so hard on ourselves.
SPEAKER_00:So I have one more question for you. Yes, but before I ask it, tell everybody if they want to know more about share and about these programs, the TMBC program or any other programs you have. Where do they where do they go? And and how do they support your mission, even if maybe they don't need it personally for themselves?
SPEAKER_01:Sharecancersupport.org. That's our main website. And you can go on there, and all our information is there about our health lines, about our support groups, about our outreach efforts, about the different disease areas. If people have had diagnosis in any of our disease areas, we're always looking for volunteers. Um, of course, people can donate and run on our website. We do have a major fundraising event coming up. We have a gala coming up in September. I know this will be aired in sub in November. But you know, all of our programs are free to participants. And so people are always welcome to attend if they want more information for themselves or someone else that they know that's going through cancer. Everything is free and very accessible through the website. And um one call to a helpline, right? Even if it's about, you know, screening or concerns about, you know, prevention or anything like that, someone will be able to help. Someone would call that person back and have a conversation and be able to provide information or steer them in the right direction if we don't have the resources for them.
SPEAKER_00:That's amazing. So, my final question for you the underlying theme of this particular podcast show is seeking joy in daily living. So, how does someone who's going through a major potentially fatal medical diagnosis, that's such a heavy uh thing, how do you continue to find joy in your life throughout that journey? What advice would you give somebody?
SPEAKER_01:You know, Laura, I think the thing that I that I tell people now is I think I really struggled with that initially. So my reality, right, when I was diagnosed, my reality was that everyone before me in my family died of this disease. So I thought that that was going to be my fate as well. And I I could not find room for joy. I couldn't let joy in. And I feel like I wasted years, right? Maybe two or three years thinking about wasting the time that I had left, thinking about not surviving, not living. And I wasn't living. Right. And so what I tell people now is that you know, the fear and anxiety is now going to be ever present once you have a cancer diagnosis, once you have, you know, any kind of major life-changing event. It's always going to be present with you. So find a way to cope with it early on, find a way to deal with it. And remember, like in this moment right now, right? Like try to be as present as you can in this moment, in this moment, in many moments, I was fine. Right. It was I was allowing myself to get ahead of myself, thinking about what if it comes back? You know, what if I end up dying from this disease? And here I am, you know, 23 years later, it didn't happen. And I wasted time, wasted the time that I had thinking about what could have happened.
SPEAKER_02:Yeah.
SPEAKER_01:And so I think finding joy now is about, you know, really being present in the moment. There's so much joy around us, whatever that might be, whatever that means for you. Right. It could be spending time with your kids, it could be gardening, it could be, I'm absolutely obsessed with tennis right now. Like I have find a lot of joy playing tennis in the morning, hanging out with my, you know, whatever it is. There's joy all around us. So, you know, I really think it's about just sort of being present in the moment. I know that sounds very trite.
SPEAKER_00:I know it sounds like it doesn't to me because this is you're speaking my language, but but I think that that's true of everybody to some extent. Absolutely. And so much of our life worrying about what might happen, most of which never does. Correct. You know, and and we can waste years of our lives not fully living because we're afraid that our life isn't going to be what we thought, rather than trying to find a way to enjoy it while we have it. Because really anybody could die at any time.
unknown:Yeah.
SPEAKER_00:There's weird accidents that happen. It's definitely harder, I think, when you've had this heavy diagnosis laid on your shoulders to do that. So to push through that is not an easy task. And I wouldn't want to begin to sound like I'm minimizing that, you know.
SPEAKER_01:Yeah.
SPEAKER_00:But like you're saying, it is, it's still important to value the life you have now.
SPEAKER_01:Absolutely. You bring up an interesting point, though. So, in so for women living or anyone living with metastatic breast cancer, right? So we all we all know that no one's getting out alive. Right. We all know that at some point all of us are going to die. Um, and people often bring up, right, you can get hit by a bus at any time, like anything can happen at any time, which is absolutely true. Um, but we don't normally live with that thought in our minds, right? Until you have like a diagnosis that can be fatal. And those living with metastatic disease, which essentially is a fatal disease, say, you know, the difference is that I know which bus is mine.
SPEAKER_00:Yeah.
SPEAKER_01:And we don't know that, right? Like we don't, and I don't live like this anymore. We don't live with our mortality hanging over our heads at every minute. Because you can't, you can't live that, you can't live that way. Right. And we know we're gonna, we know we're gonna die. Right. Maybe at some point in your life, you know, as you get older, you know, like my 93-year-old father-in-law, I think, is struggling, like at this point, right? Um, when death becomes more eminent. Yeah. But 55 years old, like, you know, you don't live, you don't think about that all the time, but with a cancer diagnosis, you do. So that mortality is always, is always there. And if you can manage to put it aside, you know, really just train yourself to stay focused in the moment and present in the moment, I mean, that's that's where your joy is.
SPEAKER_00:And I would think that every moment becomes extra precious at a time like that when you know when you know that they're limited. Like for all of us, they could be, but you're right. And when you have a diagnosis like that, you know for sure that I have limited time. And that time becomes extremely precious. Well, I would encourage everybody, thank you so, so much for being here today and and helping me understand this topic a little bit better and for the work that you're doing at this organization. And I would encourage everybody out there to go check out sharecancersupport.com to find out.org. Sorry, thank you for the correction. Sharecancersupport.org to find out what's available there. If you are newly diagnosed or have a family member who's diagnosed, or are wanting to volunteer because you would like to help other people with your personal experience, it sounds like there's a place for everybody there and things.
SPEAKER_02:Absolutely.
SPEAKER_00:Yeah.
SPEAKER_01:And Laura, I hope that this never touches you or your family. But if it does, I'm I'm your girl. I'm your first call.
SPEAKER_00:Okay. Thank you. I appreciate that. And I'm gonna go, even though I'm not battling cancer at this moment in my life, I'm still going to go dig in further on the website. I have been there and looked at it, but I would like to see what I can do because this has touched, you know, members of my family, extended family, and close friends of mine quite recently actually have been going through chemotherapy. And I had one close friend that did pass away, actually, um, from cancer. And so, you know, it will affect everyone at some point in time, either through their own life or someone they love. And so much more needs to be said and learned about this.
SPEAKER_01:Absolutely.
SPEAKER_00:Thank you so, so much for being with you. Thank you, Valora. It was great to meet you. I appreciate it. Have a great day, everybody. Thank you for joining me today on the Joy Felicity Podcast. If you enjoyed this episode, please like and share, and come follow me on all major social media sites at JoyFelicity or on my website, joyfelicity.com. You can follow the link in the description for this episode to all of the places that we can connect. Have a great day, everybody, and remember dare to dream, plan to play, live to learn.
