She Had to Give Up Her Health Insurance While Fighting Breast Cancer

Dorothy: [00:00:00] When the treatment takes as much of a toll on a person’s body as the breast cancer, then you’ve got a problem. This young woman had insurance but had to give it up. This young woman had a job but had to quit. This happens sometimes when you’re dealing with breast cancer. Not everything works like it should. But she’s alive today. The reason is because she didn’t give up.

Let’s Talk About Your Breast, a different kind of podcast presented to you by The Rose, Breast Center of Excellence and a Texas treasure. You’re going to hear frank discussions about tough topics, and you’re going to learn why knowing about your breast could save your life. Join us as we hear another story and we answer those tough questions that you may have.

Hi, I’m Dorothy. Gibbons and I’m the CEO and co founder of The Rose Breast Imaging Center of Excellence. [00:01:00] And we’re here today to talk about your breast. And today we have with us, Lilia Avila, and she is an employee of The Rose. She’s been with us for 11 years. She works as a mobile coordinator and is responsible for helping all of our schedules, uh, be organized and patients called and all of our partners alerted on our, in our mobile mammography program.

And, you know, usually on this program, we try to bring you as much uplifting information and positive information as we can. But our other pledge to you is that the information you hear will be factual and will give you insight into the different aspects of breast cancer, breast health, and breast cancer treatment.

So, Lily, welcome.

Lilia: Thank you.

Dorothy: Lily’s story is a little different. She had, [00:02:00] uh, quite a, quite a time of it during treatment, and, uh, we’re gonna, we’re gonna ask her more about it, but we, we just feel like it’s important that our listeners know not every woman is the same when she goes through breast cancer. Not every treatment is the same. There’s different levels of treatment, different levels of anxiety, of concern, and we all have someone that we’re probably more worried about than ourselves during, during this time. So Lilla, when you were diagnosed, you were very young.

Lilia: Yes.

Dorothy: 42?

Lilia: 42.

Dorothy: And how did it come about?

Lilia: I, uh, felt something on my breast, uh, felt a lump, and I was very scared. So made an appointment right away uh, to get it checked.

Dorothy: Had you ever had a mammogram before?

Lilia: I did, uh, two prior.

Dorothy: Ah. So at that time you were working with [00:03:00] us.

Lilia: Yes. Yes.

Dorothy: And tell me how did, how long did it take for you to go through the process?

Lilia: Uh, I scheduled my mammogram and waited about three weeks after that. Looked like a cyst. Characteristics of a cyst. It was bothering me a lot. So, uh, scheduled an aspiration. Turns out, needed a biopsy. Wasn’t a cyst. Got it, a biopsy done. And results came back pretty quick. I was positive for cancer.

Dorothy: So you kind of had a quasi things are going to be alright period of time thinking it was a cyst.

Lilia: Oh yes.

Dorothy: And many times we hear women who say, oh my doctor said that’s just a cyst, but the issue is it may not be just a cyst and if there’s not any fluid extracted from it, you pretty better go ahead and have that, [00:04:00] that biopsy. So then, then what was the next part of this process for you?

Lilia: I was referred to an oncologist. Uh, patient navigation helped me a little because at that point, I’m clueless to what I’m going to do, even though I work at The Rose. You don’t realize until it hits you. What is my next step? So I was kind of scared, had so many questions, but at the same time didn’t know what all to ask or what I was going to miss. So patient navigation helped me through this and was referred to oncologist.

Dorothy: So Lily, you’re, you’re Hispanic.

Lilia: Yes.

Dorothy: You’re one of our special, uh, Spanish speaking employees who can relate to a lot of our patients and you know that more of our diagnosed patients are Spanish speaking than any of our other, uh, populations. So, did you have any cultural [00:05:00] concerns? Is it, is it something that Hispanic women talk about a lot, or?

Lilia: Yes. Well, a lot of Hispanic women are, I feel like they’re very scared or they want to get checked, but once they know they’re still scared or they’re like, I don’t really want to know. Um, they’re scared to go through the treatment, ask for help, um, don’t know if they’re going to be reported, if they’re undocumented. So we see that a lot.

Dorothy: Oh yeah, oh yeah. Now you did have insurance at the time.

Lilia: I did.

Dorothy: But along the way you were pretty sick.

Lilia: Very sick, yes.

Dorothy: And but it was primarily because of the treatment?

Lilia: Yes.

Dorothy: And you had chemotherapy?

Lilia: Correct. Yes.

Dorothy: And surgery?

Lilia: And surgery. Uh huh.

Dorothy: So Lily, during your treatment, it was pretty rough. You were working and trying to maintain the hours that you normally had, but you were also, because you were [00:06:00] working full time, had insurance. And so what happened during that time?

Lilia: So during that time I was too sick to be at work. Only worked very minimum hours. I couldn’t afford to keep paying for insurance at the time. So I decided to go part time, um, and then I dropped my insurance, applied for Medicaid, so I could relieve some of that stress. Um, yeah, it was very hard.

Dorothy: Yeah, and, and no matter what, cancer treatment is expensive. Whether you’re dealing with co pays or—

Lilia: Oh, yes.

Dorothy: You’re dealing with the medications you need or any of the things that keep you from being so sick. Many times insurance doesn’t even cover the nausea medicine. So, uh, and appreciate you being so honest with me because, you know, A lot of folks go, oh, well, you’re going to get sick, but they don’t realize that it can get pretty devastating and it can interfere with all of your [00:07:00] work and all of your life. In fact, now you’re a single mother. Two boys were still at home at the time, right?

Lilia: Yes.

Dorothy: And what happened when this all came down to where you simply couldn’t work the hours you were working?

Lilia: Well, I couldn’t work anymore. I couldn’t maintain bills, insurance, everything. So I had to move out and move to my daughter’s house. Primarily for someone to take care of me when I’ve always taken care of them. And I needed that now. So she helped and financial burden— um, I didn’t want to impose that on, you know, on anybody. So I just kept working a little just to keep paying for my stuff. Um, I applied for the Medicaid to help with the medical bills cause it became a lot.

Dorothy: Right, and you’re talking about the Breast and Cervical Cancer Services Program, which is a Medicaid product, and it is available through the state for women [00:08:00] who are low income. And can’t keep their insurance up. And so even though you were working and you were employed, did you ever feel like you might find yourself with no money at all or not employed? Or, or were you more concerned about recovery?

Lilia: Um, both. Um, I just, when it hit me, I thought, what am I going to do about work? How am I going to keep working? How am I going to feel— to continue to work, to support my family. So it was very hard.

Dorothy: I hear often that our, uh, uninsured women are sometimes more concerned about how am I going to pay for this?

Lilia: Yes.

Dorothy: Than they are: how will I recover? Which is completely the opposite with the insured woman. She’s her first thought is hope I get through. How am I going to recover? Will I survive this? But I certainly hear that often [00:09:00] that. That concern about paying for the treatment is just top of mind.

Lilia: Yes, definitely. You think, am I going to be here? Am I going to survive this? Is the treatment going to work for me? Who’s going to take care of my little one financially? Am I going to be here for him later? It was a lot of questions.

Dorothy: So tell me the ages of your children again.

Lilia: Um, I have now, um, I have a 31, 30, and 14.

Dorothy: And at that time, how old were your children?

Lilia: My little one was 8.

Dorothy: And how did you tell him?

Lilia: It was very hard. Um, I didn’t want to scare him. A lot of kids think it’s something contagious, uh, which I kind went through a little with him. But I told him that I was very sick. Um, he’s heard about cancer. I told him a mom has cancer. But I have a [00:10:00] very good doctor and he’s gonna treat me and I’m gonna go through a treatment so mom can feel better. And, uh, it’s gonna take a little while. I might be sick some days and I can’t help you all the time, but his siblings are great, uh, caregivers for him as well. Yeah.

Dorothy: But eight years old, he was in what grade?

Lilia: Um, what is that? Third, fourth, I think. Third, fourth, yes. Third, fourth.

Dorothy: And so that’s a lot for a young child to take in.

Lilia: Oh, yes.

Dorothy: And did your family act differently to you after they found that out, all of them? Your older children, younger?

Lilia: Oh, yes. It was very hard for my daughter. Um, you know, and, and I don’t blame her, you know. I. You start thinking about, what if it happens to me? And that’s what she thought. Oh my god, you know, uh, family history now. I [00:11:00] didn’t have family history of it, so it was very hard for her. She’s, we’re very close to each other, so my kids took it very, very hard. It’s very difficult.

Dorothy: So in the Hispanic culture, would you have known that you had family history? Is there openness about breast cancer like for your grandmother or great aunt or any of that kind of relationship?

Lilia: It’s Hispanic people, um, back older Hispanic people didn’t really talk much about if somebody was sick like that. You don’t get a straight answer from them. So it is hard and we’ve had no cancer history ever like, so it’s very difficult for people to open up.

Dorothy: Yes. My My mother had cancer and it wasn’t breast cancer, but I can remember that the whole family was calling it something different, you know. Well, she has a woman’s [00:12:00] disease or she has, you know, and, and they all said, we’ve never had any one in our family with any kind of cancer. So, you know, we all come from backgrounds that maybe people didn’t talk about it or there wasn’t that openness and it just wasn’t done. You know that, so many women have since they were diagnosed found out they actually did have someone in their family that had it and it’s, it’s. I think it’s very important that, and I’m sure you have felt the same with your daughter, you’re going to make sure everyone knows it. Now there is, yeah.

Lilia: Oh, yes. Uh, I have an aunt who, uh, well, my dad’s half sister, um, she had cancer, I believe, uh, started in her bones, but might’ve, you know, metastasized. So it was breast and so— what is it? Which was it? But nobody wants to talk about it. I don’t know. So, uh, we really don’t know because [00:13:00] they didn’t want to talk about it.

Dorothy: Yeah. And that’s an important message for you to send.

Lilia: Yes.

Dorothy: To all women, but especially to women who might not even be open to that.

Lilia: Definitely.

Dorothy: Do you find yourself advocating for young women?

Lilia: I do. I feel like, um, everybody needs to take care of themselves. Um, I have women who call and say, Oh, well I’ll just do it another day. Oh, it doesn’t matter. Oh, I’ll wait till next year if I can get in. I’m like, no, no, let’s talk about it. So try to get them an appointment, try to figure out what their needs are. It’s very important.

Dorothy: You’ve, you’ve had a lot of trouble with that though. When you hear patients kind of blowing it off and—

Lilia: I do. People want to put off getting tested. It’s a simple test. It’s preventative. Why not know [00:14:00] now? Why wait until it’s too late?

Dorothy: Did your co workers treat you any differently?

Lilia: They didn’t. I got a lot of love from them. They were very helpful. I had amazing co workers. They’re great. So they helped me out a lot.

Dorothy: So I remember the time after you were in treatment. And, uh, you had a scarf on and you came up to the office and I truly didn’t recognize you, did I? I mean, you kept saying, you really don’t know who I am. And I knew your eyes. You have those stunning eyes. But I kept going, you know, I know this person, but so cancer has many different effects on us. It has a lot of impact. And sometimes people don’t realize that. They’re reacting whether they even know it and, and it’s, uh, thank goodness you cleared that.

Thank goodness you allowed me to have that moment of not knowing, you know, you were very [00:15:00] generous with that. Some, some people might have taken offense and I always, always thought so much of you for that. That was really special to me. Were you surprised about any of your treatment? I know you said that there were a lot of things you didn’t know, but did any part of it really surprise you?

Lilia: Um, I didn’t know how I was going to feel, you know, was this going to work for me? Um, there was some treatment that wasn’t working for me at the very beginning, it stopped. They had to change it out. I did clinical trials, uh, so that helped me a lot. So, I was really concerned about how was this going to work for me? Was this going to cure me?

Dorothy: So, did you have any concerns going into a clinical trial?

Lilia: It did because, I mean, when you think about clinical trial, you don’t really know if it has this work for other people. I was curious to know, you know, but it’s a [00:16:00] clinical trial. You can’t, they can’t say much, but I’m glad I did it.

Dorothy: Oh yeah. And you’d encourage others if, if they’re not responding to the treatment to, to try that. Were you, were you, Ever angry about being diagnosed?

Lilia: I was. I was like, why me? Why do I have to get this? Why? I just, you know, I have no family history of it. So why did this happen to me?

Dorothy: Did you feel like you had done something wrong?

Lilia: Yes.

Dorothy: Like this was some kind of, really?

Lilia: I did. What? I would always ask myself, Oh my God, God, what did I do to deserve this? I did.

Dorothy: Right. And that’s not unusual.

Lilia: No, I questioned it a lot.

Dorothy: I just haven’t heard you say that before.

Lilia: Yep. I did. I cried a lot. There was days I couldn’t get up. And I would tell my daughter, I’m going to stop this. I’m not going to do this no more. I was mad, [00:17:00] but I’m glad I did it. I’ll do it again if I need to.

Dorothy: So you, you were telling her you’re going to stop treatment because it was so hard.

Lilia: Cause it was so hard. Cause I was so sick. There was, there was days I was six days straight sick. I couldn’t even come to work. Then you worry about work, worry about everything. So it was very hard.

Dorothy: Now, how long ago was this?

Lilia: I am six years out already.

Dorothy: Oh, congratulations. Yeah. You’ve, you’ve met that five year magical mark.

Lilia: Yes.

Dorothy: Yes. Do you, uh, do you always identify yourself as a survivor? I mean, do you, when you think of Lily, does that, is that the top label you put on yourself or the top description?

Lilia: At first I did, but now it’s like. I’m over [00:18:00] it. I’m good. You know, but at the very beginning, yeah, I survived this. I kicked its butt.

Dorothy: You did. You certainly did.

Lilia: I did.

Dorothy: Yeah. And you continue to have your annual mammograms.

Lilia: Oh, yes.

Dorothy: Oh, yes. Any other scares or anything?

Lilia: I’ve had another scare. I did have a surgery again after that. Um, pre cancerous. So, um, they found it on my mammogram. My ultrasound, actually. I have very dense breasts, so very hard to find. So, it’s very important when you get that letter saying you need an ultrasound. Things can be hiding. So, there was something there and I had surgery and it was removed. No treatment. Pre cancerous, though.

Dorothy: Wow. Wow. Scary time.

Lilia: Scary situation. Oh, yes. I thought for sure I have cancer again, but I’m gonna do this again if I have to.

Dorothy: [00:19:00] Yeah for your kids.

Lilia: Oh, yes.

Dorothy: Probably also for yourself.

Lilia: Oh, yes.

Dorothy: So Do you feel stronger since then or more vulnerable or?

Lilia: I feel like if I can if I did it once I can do this again You know.

Dorothy: And you’re back working full time.

Lilia: I am. Not quite full time, almost. It’s taking a toll on my body. Uh, yeah, I’ve, I’ve developed, uh, one of the, um, aftermath of that is neuropathy. So, um, that kind of has not ever gone away.

Dorothy: So explain to our listeners what that means.

Lilia: Neuropathy is your nerves. Uh, it affects your nerves. Um—

Dorothy: In your feet, in your hands.

Lilia: Oh yes, your feet, your hands, you feel sharp pains, my right hand’s always numb, um, hard to pick up small [00:20:00] stuff, I don’t ever feel, you know, I can only feel my pinky. And um, it’s caused a lot of, uh, damage to my nervous system, I’ve just recently, a couple weeks ago was actually clinically diagnosed fibromyalgia. So now I’m taking medication for that. Um, Osteoarthritis. Um, Chemo. Kind of advanced that. Uh, so it’s deterioration of your bones. So it’s, it’s been hard. But I’m still here.

Dorothy: You’re still here.

Lilia: I’m still here.

Dorothy: And, and again, that’s something that not everybody talks about. There can be lasting effects. And, and it’s not, it’s not. It’s not the end of the world, but it’s certainly difficult to have to continue to, to deal with it. So what would you tell your 42 year old self when you, now, that you didn’t think [00:21:00] of then? What would you say to her now?

Lilia: You got this. You’re a fighter, you got it.

Dorothy: And that’s a big part of this.

Lilia: Yes. Yes.

Dorothy: And you had absolute belief in your doctors and your treatment.

Lilia: Yes.

Dorothy: Yeah. Another big part.

Lilia: Oh yes. He’s great. It was great.

Dorothy: So Lily, what’s your dream for your children?

Lilia: I want them to strive and, um, overcome everything and do great at school and I’ll be glad when my last one is in college. He’s, he’s very smart. I can, I, He can do stuff, like he’s amazing and I want to be there to see that.

Dorothy: And you will be.

Lilia: Yes.

Dorothy: And that’s the other thing you’d say to that 42 year [00:22:00] old.

Lilia: Oh yes.

Dorothy: You know, you’re going to stay around. I think that’s the best message you can send to anyone about a cancer experience.

Lilia: Oh yeah. Yeah. And for sure, tell these women, get your mammogram done, it’s very important.

Dorothy: And you’re adamant that it’s done every year.

Lilia: Oh yes, I don’t skip. That’s one thing I do not skip.

Dorothy: I want you to think about young women who think they’re too young to have breast cancer. Any other advice to them?

Lilia: I don’t think no one’s ever too young. We have very young diagnosed patients here at The Rose. Um, Cancer doesn’t discriminate. Men get it too. Uh, it’s very important to get it done every year.

Dorothy: And then I heard you say this before, but I think your final, final message is to take care of yourself.

Lilia: Oh yes. And everyone needs to take care of themselves. If you don’t take care of yourself, who’s going to take care of your young children? Uh, I feel [00:23:00] like a lot of women don’t take care of themselves.

So I’ll put it all, but who’s going to take care of my child while I’m doing chemo or while I’m going through treatment. But who’s going to be there for your kid when you’re not here and you didn’t do what you had to do.

Dorothy: And of course, I know you’re very, very grateful for your family being so close, so responsive, so ready to, to help you. And that support always means a lot.

Lilia: It is. Family support is number one, it’s needing that person there by your side.

Dorothy: Well, thank you, Lily, for sharing your experience and being so open and honest about what you went through and for telling us some of the harder to listen to and more difficult parts of that treatment. I so appreciate you. And we’re so glad that you’re beyond that six year point.

Lilia: Oh, yes. Thank you for having me.

Post-Credits: Thank you for joining us today on Let’s Talk About Your Breasts. [00:24:00] This podcast is produced by Freddy Cruz Creative Works 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 #LetsTalkAboutYourBreastsb. We welcome your feedback and suggestions. Consider supporting The Rose. Your gift can make the difference to a person in need. And remember, self care is not selfish. It’s essential.