Dorothy: [00:00:00] How far would you go to ensure your loved one had the best medical care possible? Our next guest, Ellen Elam, drove miles, asked questions, and went against the norm to help her sister, Cindy, who was fighting breast cancer. Hear Ellen’s story and why today she considers that patient navigation is by far the most important thing any patient could have.
You’ll also hear why Ellen’s dream is that everyone facing any kind of disease has a patient navigator. Someone to stand beside them, support them, and get them through by doing whatever is needed, whenever it’s needed, and however it’s needed. Help us share the mission of The Rose by subscribing to Let’s Talk About Your Breast on your favorite podcast platform and by sharing with your family and friends.
Let’s Talk About Your Breast, a different kind of podcast presented to you by the Rose, a breast [00:01:00] center of excellence, and a Texas treasure. You’re gonna hear frank discussions about tough topics, and you’re gonna learn why knowing about your breast could save your life.
So Ellen, you’ve been a small business owner for a very long time. Tell us about that business and, and what got you into it and why it seems so important to you.
Ellen: So I’m currently not necessarily a small business. I’m a consultant, but I’ve always been involved in small business as a child. I grew up in Miami, Florida.
My family was the owners of a drugstore, a small business family run local, loved by the community. My father, my grandfather and my uncle were all part of it. And so I just grew up with that. I always tell people when I was tall enough to reach the counter or any of my family members, when we’re tall enough to reach the counter, we were on the payroll. So I learned a [00:02:00] lot from them about business and what not only what it does for you financially, but what it does for the community and what you can bring to the community by being a small business owner. So I feel like that’s where I got started in my love of being. Not only my own boss, which I think a lot of it’s that too.
I am not very good at taking direction from others. So that’s a big part of it, but I, I, um, have always had that. So when I moved to Texas years ago, I was in sales and I loved that part of it. So when. My husband and I were trying to have a baby. I was like, I don’t want to necessarily work for somebody else.
I want a lot of flexibility. And mind you, this was, you know, 20 something years ago before, you know, stay at home, work from home type of, um, positions. So, I decided to start a promotional business, which I loved. That just grew [00:03:00] like my small little business to keep me out of the shopping malls and keep me from, you know, just spending a ton of money because I had nothing else to do grew into this amazing promotional business.
That then I started, um, thinking, well, I need to expand this. And I started another division of that business, which was an office supply division. So I grew that business and I sold it seven years ago to another small business here in, in Houston, who I, like, Pretty much hand selected them because I knew I wanted my employees to have a place to go that was similar to the what they’d been Experiencing. So I sold it to a local business I stayed on and worked with them and a consultant capacity for about four years And then when my son started high school, I wanted to be a stay at home mom and be there for him.
So I stayed home with him, and I just [00:04:00] consulted with them, and then a couple years ago, I decided, um, not a couple years ago, I, I decided to stay home, and just do consulting. So now I work with small businesses, because I love small businesses, and I go in and I help them. look at their back office systems.
I look at their promotional side, their marketing side and help them grow their business. So in about a five minute you just got my full professional career, which I don’t know how exciting it is, but I, I, I feel like for me and what I’ve always loved about being a small business owner is you have so much more impact in the community, I feel.
And when I had my company, I had a program which we called, um, Cause and Effect. Company, my company name was Office Effects. And the only reason that’s important is because this cause and effect came as a, a name play off of that, our company name. And [00:05:00] what we did was, We would go out in the community, we would partner with, um, 12 non profits and then our clients were able to allocate a certain percentage of sales that they did with us back to those 12 non profits in Houston.
And, and that to me as a business owner, that was the joy of not only supporting and helping small businesses, but also helping non profits at the same time.
Dorothy: So Ellen, you did that like Many years ago, that was long before it became popular to buy this and so much goes to a charity or anything. Wow. And, and you’re absolutely right.
That small business does impact the community. It’s always involved in the community. It depends on the community for it to actually be able to survive. Your original idea, you’ve moved into many other non profits to help. So, uh, you know, I first met you through the Susan [00:06:00] G. Komen Foundation and some of the things you were doing there, but why, why did breast cancer become such a cause that you wanted to really be behind?
Ellen: So my, I have a sister. I have many sisters. I’m one of six children. I’m one of five girls. I have a brother. So I’m the youngest girl. And my brother is the youngest child. So, we have a close family. So I have a, my older sister, she’s the third in line. I’m the second in line. We were super close growing up.
She’s not just my sister, she was my mentor, my friend. She’s the reason I moved to Texas, when I moved to Texas after college. And she got breast cancer when she turned um, 40. She discovered breast cancer. Um, she had It was very early stages, so she had, um, she went through chemo, I believe. I [00:07:00] mean, it was pretty much like a bleep in the road.
Very, very non, it was almost non important in her life. So, at that time, we were like, okay, we’re past this. Well, right after she reached her seven year mark, she discovered she had another lump. And so, she started her journey, and she lived in Dallas, which is where I moved from my, um, hometown to, and she lived in Dallas.
I lived in Houston, and, um, I was not, I don’t know how to say it nicely. I just wasn’t happy with the treatment that she was receiving there. I felt like there were better options for her here in Houston, so I started to. Being an advocate for her trying to find another solution than the doctor that she was seeing in in Dallas So we brought her down here.
We Took her to [00:08:00] MD Anderson where she was diagnosed with metastatic breast cancer So at that time We didn’t really know much about metastatic breast cancer And I immediately started, that was right at the same time that iPads came out. And my husband is always the first to buy the, the first of anything new out.
So I had this fancy new iPad. We were at MD Anderson, talking to the doctor. And I whipped out the iPad and I just started taking notes with everything he was saying. If he would give me a word that I didn’t understand, I would look it up. But one thing that he said to us was clinical trials, you need to get into clinical trials.
And so, I started researching right then while we were at MD Anderson, different areas for her, or different areas, different, um, groups for her to go to, to look at clinical trials. So, I was a big advocate [00:09:00] for her in that part of it. I also, she was my best friend. And I could never have imagined not growing old with my sister.
To me, that wasn’t even imaginable at that time. So when we were going through all of this, I never even thought, wow, I could lose her to this. My whole thought process was, you’re going to survive, I’m going to be by your side, and I’m going to find a way for you to live so that we can live in rocking chairs on a front porch together telling stories.
Well, unfortunately, that didn’t happen. My sister passed away, um, 10 years ago, almost two, like a month and 10 years ago, 10 years and a month ago. And um, so after that experience, everything I did, not only on, on that side of it, of being the advocate for her and helping her find clinical trials, we drove, I drove her All around Texas, [00:10:00] if there was something that I, I found or the nurse that I had communicated with found, you know, I would get her in the car and I would drive her.
We went to San Antonio, we went to Austin, we were in Oklahoma. We, you know, I think one time New Mexico, we were in Florida. We’ve went everywhere. And so, my promise to her knowing that she wasn’t going to survive. We had very open and frank conversations was I’m going to keep on fighting this fight. And what my sister said to me was everybody needs an Ellie, which is what she called me, was Ellie.
And she goes, everybody needs an Ellie in their life. Everyone needs somebody like you to go out there and help them find a way to get past this. She goes, that’s, that’s what I really want from you. So, you know, how do you say no to that? You know, not only is it the person that You know, you’ve dreams living your whole life with it’s [00:11:00] the person that you look up to the most and she’s asking you to do this.
So that began my journey of. of helping breast cancer. I’m a big believer in research, I think research dollars need to go there, but I’m also a big believer in helping the people who don’t know that there’s help out there for them. I feel like, there’s a, you and I have talked about this multiple times and I love saying, saying this story is, excuse me, um, I had an employee and her name was Sylvia.
And she had a mammogram and she was diagnosed with, um, you know, stage one breast cancer. And so she came to me and she was telling me, you know, I don’t have the time off. I need to be with my family, you know, I can’t do it. And I was like, no, there’s not an, there’s no other answer except you need to go and get this taken care of.
And as her journey. Progressed. It was at the same time. I was transitioning out of my role. So I, I would stay on [00:12:00] top of her, but not the same way that I would if I was to see her every day. So long story short, she didn’t go have it taken care of. She’s still, you know, I still fight with her every time I talked to her about what are we doing about this?
And, and that, that Sylvia represents so many Sylvia’s to me and, and to you probably of, um, Lost people who, who we can help, but they don’t know how to find the help and they need our help. I like to say my help in getting them to that next stage.
Dorothy: Wow. Now you’ve just covered about 10 different topics there I could go any way with.
You know, I’m just curious, go back to when you sort of kind of knew that your sister needed different care. What, what were your flags without, without going into, was it a gut feeling you had? Was it? Listening, because at that point you weren’t that deep into the research part, you just knew?
Ellen: I, I, [00:13:00] well, I knew, but I knew because I could tell from that doctor like sitting, I can go back to that moment right now as we’re talking and be sitting in that room and that day I’ll never forget for multiple reasons.
One, there was an ice storm in Dallas. There was an ice storm in Houston the same day she was coming. She was supposed to fly out. Um, like for instance, on a Monday, her appointment was early Tuesday morning. Well, I was, I, I called her and I’m like, the only way you’re going to see this doctor and believe me, I had Every— used every resource I could to get her in to see this doctor at M. D. Anderson and, um, we flew her in early. We got her there. This everything was closed. My husband took his big truck and drove us and nobody was on the streets when we showed up at M. D. Anderson. There was literally nobody at M. D. Anderson. We walked up to [00:14:00] the breast cancer floor and there was a nurse that came, you know, running back Probably in her sweat.
She wasn’t even in dressed appropriately. She was dressed, but not. And, um, she, she was like, Okay, doctor, um, I, I always mispronounce his name. So I won’t, I won’t say his name. But, um, she said he’s here. He can’t believe you’re here. He doesn’t know how you guys got here. But he’s still gonna see you. And I was like, well, that’s fantastic.
Because we, Worked crazy to get her here. So, we went in and we sat there and we talked and, and he was frank. As frank as could be. And my, I remember me walking in with my sister and my husband telling me, Whatever happens, you cannot cry. Like, you have to be strong and it doesn’t matter what he tells you, you have to be strong.
So as he’s telling us this, you [00:15:00] know, he, he was, you know, you’re, you’re gonna die. This is metastatic breast cancer. There is no cure. This is 10 years ago. Obviously things have changed so much since then, but he’s like, so, so we need to address that. Has anyone told you that? And she said. No, no. And for me, I was like, this is why I brought her here.
Like, we need to know what our fight is. And he was very blunt and very honest. And when I think our experience prior to that, we’re so rose colored. And so, you know, Oh, you’re going to be fine. We’ve got the best, blah, blah, blah. And I knew. Because of what I read and what she was telling me, I was like, this just doesn’t, it’s not adding up.
What you’re telling me doesn’t add up. I need to get you and see somebody who’s the best of the best, which is why we brought her here. And when that doctor at MD Anderson was telling us that, I, I just [00:16:00] knew, this is, you know, call it my faith, call it my intuition, call it whatever. I just knew. This is this is it and I can only I I’m your person right now.
I’m the one who’s gonna be your fighter and So yes, maybe it was intuition, but I also go back to I think a lot of it was my faith like I knew You know God was there helping us guiding us and into what was next for her
Dorothy: But that’s so important. I want every advocate to hear that when something doesn’t feel right or does feel right, you know how to move forward.
And you can’t do that if you’ve got a lot of questions in your mind about what someone’s saying to them. So now fast forward to the Sylvias in the world. And why do you think women, even with someone encouraging, with an employer encouraging, why do you think they Don’t move forward?
Ellen: You know, I right when you were saying that and I was listening to you I was thinking I think the biggest [00:17:00] fear for a lot of people, and probably myself too, is You never want to appear to look stupid.
You never want to ask a stupid question But I feel like that that’s the worst thing you can do and whenever I’m talking to people Friends, I think I’ve become an advocate in our friend group and our family group because I’m so passionate about it and I worked so hard to get my sister through all of this that, um, they ask me a lot of questions and I always say, ask the doctor, don’t be afraid to ask him a question, ask any question you want and if they brush you off like you’re stupid, that’s not the doctor for you and it’s okay for you to make that step.
I think we’re, all right. That’s such an intimate relationship. A doctor and a patient, a doctor and a caregiver even is an intimate relationship that you should feel comfortable talking to them in. And I’ve, I feel like for Sylvia’s, you know, the Sylvia’s, they’re afraid to ask questions for [00:18:00] whatever reason.
It’s maybe I don’t want to hear the answer. Or maybe I don’t want to appear stupid, or maybe I don’t have the finances for him, for me to get to the next level, you know, and how do I say that to somebody that I don’t know, so I feel like those, those, all of those things together combined are exactly the problem, you know, it’s, it’s a fear, and it’s a fear of asking questions.
Dorothy: And you also may not know what to ask.
Ellen: Right.
Dorothy: And sometimes I think the best question is what else should I be Asking you, doctor, what else do I need to know right now, this minute, this week?
You know, I think, I think it’s all of those things, Ellen. It’s, but it’s also having that person just continue to encourage you. Through all the times that you, you were with your sister, tell me your sister’s name again.
Ellen: Cindy.
Dorothy: Cindy. All the times you were with Cindy, now did you ever, Did you ever feel like you couldn’t keep going?
Ellen: Um, no. I, I, I never, [00:19:00] I never gave up because she never gave up. And, um, she was amazing. I mean, obviously, she’s my sister, so I’m gonna say she’s amazing. But, she was amazing. And, she was a, a, a leader and she was a fighter. And she was a helper and, you know, we grew up to be servants and community servants and so she was very much that so she was surrounded by a lot of people and I was just, um, a couple years ago, you know, as as life goes on.
I’m getting older and I look back and I think, God, man, I made some stupid mistakes and said some stupid things and, and, um, and I realized, you know, every year I celebrate my sister, especially in the month of October, and, um, this year was 10 years, so I’ve been trying really hard to think of something to really, um, celebrate her life, and I’ve been working towards a project, and I reached out to my sister’s best [00:20:00] friend, and Um, last year and I said, you know, I just have to tell you, I always thought I was her person like she was my person for sure.
There was no question about it. And I said, I always thought I was her person, but now when I look back, I don’t think maybe I was necessarily her person. Maybe you were her person and my whole life I’ve been saying I was her person too. And she’s like, no, Ellen, I think. I think you were her person, too. You never gave up on her.
You never stopped dreaming about what was gonna happen for her. Or, um, pushing her to keep trying and keep going. And, and, and you saying, did I ever give up? I never did because I told my sister, I remember sitting at her kitchen table going,” You’re not gonna die under my watch. Like, that is not possible.”
You know, unfortunately, that’s not what happened. But I sure did try. And we sure did keep on looking for the next best, you know, [00:21:00] thing. My brother in law always likens it to, um, the whack- a- mole game, where if it doesn’t work, then you whack another mole and keep trying. And if that one doesn’t work, you keep trying another one.
And that’s kind of what we did with her. Um, but we both know 10 years, it was so different than what it is now. There’s so much more advanced now.
Dorothy: But it still doesn’t matter if you don’t know.
Ellen: Correct.
Dorothy: Still doesn’t matter if you don’t know where to go, especially if you don’t have help.
Ellen: Right.
Dorothy: And so tell us what have you done in your volunteer and in your, in your giving history that, that you think is making a difference towards helping those women.
Ellen: So I, I think, um, I’m still trying to figure out what to do. I, I, I feel like I’m, Just at the maybe at the bottom of the mountain that I still have to climb up. My dream is to be able to have more More navigators, if you will. I’m not even sure of the correct word—
Dorothy: That’s a correct word, Yes.
Ellen: That are available [00:22:00] to the Sylvia’s that are out there because I feel like there’s still so many people who Get dropped, you know through the process and I’m not sure how to make that happen, or how I’ve made that happen, I just know that’s a goal of mine.
And I know working with the Rose, talking to you, you’ve been so generous just to even take time to talk to me, when I’m, you know, just Ellen Elam, a girl in the community, trying to help. And, um, I, I’ve always been so appreciative of that, because your insight is so wonderful. And then, and uh, Areas of talking to other advocates and talking to, um, women and men that I’ve met through Komen and now I’m involved with American Cancer Society.
Like I love being a part of it because I feel like I can expand that circle of people that I talk to and I feel like eventually. We’re going to, there’s going to be an organization that helps promote navigation that’s not just [00:23:00] within, I understand that, um, for instance, the Rose has navigation, um, specialist and MD Anderson has navigation specialist.
I wish there was an organization that was just navigation specialist that could bring everyone together. So that they’re referring not just within their organization, but referring with other organizations, if that makes sense. And I don’t know if that exists. I don’t think it does right now.
Dorothy: Not at the level you’re talking about.
There’s, there’s different groups that, uh, promote navigation, but not at the level you’re talking about. Because what you said was not within the organization. If a woman has a need that’s outside the organization, we need navigators to say, just wait. You know, no, we’re going to take you somewhere else because this doesn’t sound right, or I know this terminology, so let me, let me show you why we need to find other help.
And I also think [00:24:00] that you touched upon the clinical trials. If we don’t have more clinical trials, and it starts right there, it starts with whoever you trust. that is helping you get through something that says, you know, it would be good if you tried this, or if you went into that. We don’t have enough information yet.
In spite of all the advances, we still don’t know why it moves on some women and doesn’t on others. So I just think, uh, your dream fascinates me. I want you to do it. I want you to see it happen. It doesn’t matter what disease, and I know we’re going to focus on breast cancer, but it doesn’t matter what disease.
If you’re sick, you need a navigator. If you need to recover, you need a navigator. It just, it’s just so important. And not, not everyone has someone like Ellen in the world.
Ellen: Right.
Dorothy: That’s going to have that time or have that curiosity. Our, our that um, I mean we, we all have [00:25:00] that passion, compassion for someone we care about.
But yours was kind of dogged. I love the, what’d you call it? Whack-a-mole?
Ellen: Yeah, Whack-a-mole.
Dorothy: Whack-a-mole. Yeah. And, and not to feel like you’re defeated.
Ellen: Right.
Dorothy: That’s hard for navigators. They, they have many times when it’s, it’s really hard.
Ellen: Right. Well, and I think too, one of the things that our, um, our family focused on with, with my sister was we were kind of all in it together and, um, Whether, um, my sister’s husband didn’t necessarily always agree with, you know, my crazy Thelma and Louise ideas with my sister.
He was like, if this is something she’s willing to do, then, you know, go for it, let, let her go for that. And so I was fortunate that I had a supportive husband. She was fortunate that she had a supportive husband and [00:26:00] we both together were like, we’re not going to take. You know, as an answer, we’re just going to keep trying and trying.
Dorothy: That’s a good point. You have to have the rest of the family behind you. You can’t be the only one.
Ellen: Right.
Dorothy: Yeah.
Ellen: I think, I think, you know, back to, um, talking about not giving up. I think, you know, just having a really great support system as well is really key in all of this, you know, and, um, talking about, um, advocates and the, the Sylvia’s and the people, you know.
You always need somebody and there’s going to be someone it’s asking for help. I think it goes back to asking questions and asking help and, um, you know, accepting help. If you’re somebody who, no matter how strong, like my sister was strong and she would have never asked for help because that’s not who we were raised to be.
We could do it. We could, we, we would get things done on our own. And then knowing that I need help, you know, and accepting help is [00:27:00] such a big part of being, I think, a patient as well, too. And, and knowing when it’s time to say, yes, I need your help. And, and having somebody who Provides grace to that patient as well because you’re going through so much, you know asking just like you said asking the right questions is so key You know, I think it’s very important.
Dorothy: So now I think you’ve told us if you had all the money in the world, what would you do with it?
Ellen: Well, I would You know, that was an interesting question that you you had Let me know you’re gonna ask and I, I’ve thought about this so many times because of course, you know, I’m going to win the lottery every week. So, um, when I, I think about that, one thing is I, I would definitely, um, start some foundations to support, um, causes, you know, research is important, but my true cause is, you know, patients and advocates and, and making sure [00:28:00] they get the care and the help that they need.
And so I would do something with that. My husband would kill me if I didn’t say I would buy him the boat that I’ve been promising he could buy for the past 20 years, so I would do that, but I would also make sure that I set up a legacy for my son. I have one child. He, I try very hard to make sure he understands the importance of giving and being an advocate and being out in the community and helping others.
And I would want to make sure he was set up to be able to continue that legacy. I don’t want I’m not saying give him a bunch of money to just go off and do anything. I would want to set it up where he was able, um, you know, academically and, um, um, fiscally responsible to go on and carry this out so that it’s not just me.
It’s a sustainable, you know, ongoing process. [00:29:00]
Dorothy: So why is it that you give to the Rose?
Ellen: Well, I love Dorothy Gibbons because, as I said, she takes my phone calls when I call, so I love that. But I, I, I truly believe I met you, I don’t know if I’ve ever told you this, I met you years ago when I had my office supply company and I was part of a, a business group and we had a meeting at the Rose and I was like, wow, this is amazing.
This, this place is so cool what they do. So you’ve always been. Um, on my radar. But when I was with Komen, I feel like what the Rose does is so important and you reach people who are really in need. And that was one of the things that I was so proud of when I was at Komen was that we were able to fund the Rose so that you could go out into the community.
You could go out into the areas where women can’t come in to a doctor’s office and get a [00:30:00] mammogram. So you would take those beautiful coaches, which I would definitely buy one of those if I had all the money in the world and, um, you, you go out there and you service those communities. And I think that’s so important because those patients, those women don’t always know.
and don’t have the means to get into a big city to go to see a doctor. So I, I totally believe in what you do, and I believe in who you are.
Dorothy: Thank you. Thank you so much for that. Alright, let’s see. We have just a couple of minutes left, so tell us what you think needs to change in breast cancer.
Ellen: Oh, wow. Um, well, I think From my point of view, which is probably different than your average person, because I’ve been on the giving side, and I’ve been on the side where we’re no longer giving like we used to.
And that’s a big, um, hit for somebody like [00:31:00] me who’s been all about raising money to support, um, nonprofits that can then go out and grant the Rose and many other organizations like you, dollars to help reach these women who need help and men too. And, um, and that needs to change. Like we need to go back to granting dollars and helping organizations like you in the community.
And for me as a fundraiser, um, that’s, that’s, that hits home hard because I know what it did in the past and I see what it’s not doing now and I feel like that can change. It’s us talking, multiple people talking and getting back to what are the real needs, which the real needs are, we need to help these people.
And patients and women who don’t know that they need help and that there’s help out there.
Dorothy: Right.
Ellen: And and that’s [00:32:00] what my biggest problem is right now
Dorothy: So, what would you tell a caregiver? As they’re trying to help someone that they love more than life itself? What would you tell them?
Ellen: I would tell them that You need to Um, you need to give grace to the patient, um, and that all you need to do is provide them love and support and, and just be there and not be afraid to ask questions, not be afraid to look like an idiot and never, I never take no for an answer.
So if you believe, like if your gut and your faith is telling you. Try something else. Try something else.
Dorothy: That is great advice. Yes. Well, thank you so much for being with us. We appreciate you. And, you know, as one of the top fundraisers in [00:33:00] the city, as far as we’re concerned, we hope you get your, your dream.
I hope that comes true.
Ellen: Thank you.
Dorothy: Navigator for everyone that needs it.
Ellen: Yes. Thank you. Thank you for having me.
Post-Credits: Thank you for joining us today on Let’s Talk About Your Breasts. This podcast is produced by Speke Podcasting and brought to you by The Rose. Visit therose.org to learn more about our organization, subscribe to our podcast, share episodes with friends, and join the conversation on social media using hashtag #Let’sTalkAboutYourBreasts.
We welcome your feedback and suggestions. Consider supporting The Rose. Your gift can make the difference to a person in need. And remember, no Self care is not selfish. It’s essential.
