Real talk: Living long-term with MBC

Transcript

Eliza Park, MD, MSc [00:00:08]

Hi there, everyone. Please call me Leeza.

I am very happy to be here and, quite honestly, I have the easy job this evening because I’m here with the true experts, Lesley and Katherine, who between the two of them have been living with MBC for a total of 35 years.

If there has been something, I am almost a hundred percent sure that they can tell us what it’s like.

I think, as many of you know all too well, there is so much to learn and quite possibly even more to navigate when you are diagnosed with this disease. With any major change or shift in our lives, it takes time to learn to live with something that is unexpected. And what I deeply appreciate about both Lesley and Katherine is how they can embody and tell us and share with us more about how important it is to live life to the fullest while living with the very real constraints of the disease and treatment. In that respect, I am here to learn as much as all of you.

To start this off with a small question, can each of you spend a few minutes telling us about you, your diagnosis, and how long it has been since you’ve been diagnosed with MBC?

Lesley Kailani Glenn [00:01:54]

My name is Lesley Kailani Glenn. I was diagnosed de novo in 2012, the day before Thanksgiving. I’m hormone positive. I was HER2 negative at the time, but now I’m HER2 low. I also had the progesterone, which was positive, but that also went to negative, but that they still consider that hormone positive. I’m on my fifth line of treatment.

I am a mom of three human children. My oldest just turned 37, my youngest is 30, and then my middle boy is 31. And then I have three cats and a dog. I really love it. I live in southern Oregon in a beautiful city called Central Point where the airport is virtually one terminal. So it’s really amazing to go through security.

I’ve been doing advocacy for the past 8 years. I met Katherine back in 2015 when we were part of the very first Hear My Voice and we were just thinking about it, that I think we’re one of three, yeah,

Katherine Contreras [00:03:17]

That are still here.

Lesley Kailani Glenn [00:03:18]

That are still here. There’s probably just three of us that are still here. So it’s such an honor to be able to share the stage with her.

Katherine Contreras [00:03:26]

My name is Katherine. I was diagnosed stage III in 2003, and I was diagnosed stage IV the day before Thanksgiving. I didn’t know that, that you were diagnosed the day before Thanksgiving, in 2004. So I just celebrated 20 years back in November.

And you know what? Life is wonderful. It is amazing. Everything I do is extra. That’s how I feel.

I have three grown kids. They are 42, 40, and 37. And I have two grandchildren. And I have a 17-year-old cat that sleeps all day. And it’s amazing to be here.

I have a 20-year timeline here that I’m going to set up somewhere for that you can look at it. It will tell you all about my treatments. I think I’m on treatment number 15. My last five treatments, I believe, were not even developed when I was diagnosed. So, yay for research.

Isn’t that amazing? It’s so amazing.

We will have this available for you to look at, and you can see what I’ve gone through. I’ve had some really easy times, like 3 years to 4 years where it’s really, really easy, and I’ve had some really, really difficult times. You just go with it and do your best.

Eliza Park, MD, MSc [00:05:18]

So I assume you know every trick in the book about getting your infusion scheduled, coordinated with your labs on the day of the appointment.

Katherine Contreras [00:05:25]

Yes.

Eliza Park, MD, MSc [00:05:25]

And that’s critical knowledge.

I’m going to ask a few questions for each of you, but in addition, if there are questions that you think would be really helpful to learn more about, please feel free to ask them. And I forgot to clarify how folks can do so, but we can go old school and just raise our hands. Or through the chat function over Zoom as well.

The first question I’m going to ask you is, given that it’s been quite some span of time, how has your perspective or approach to living with MBC, how has it changed over time?

Katherine Contreras [00:06:07]

As you know, being diagnosed with metastatic breast cancer is life changing. It’s so, so difficult. And for me, it took me several years to come to terms with my diagnosis.

I continued teaching, and I was able to be in the real world when I was teaching and I didn’t think about cancer. And then I went home and all I did was think about cancer, and that was how I lived for 3 years, which wasn’t really healthy, but it was what I needed to do to survive.

Through a lot of help, a lot of therapy, a lot of everything, mindfulness, I’ve been able to put everything together. And now cancer is a part of me and it’s OK with me. Like I’m OK with having cancer. When we talk about cancer, I don’t have anxiety like I did in the beginning. When we talk about cancer, I feel like I can lift others up because I’m feel fine with it, I’m OK with it.

That’s a really big thing to me. When I was first diagnosed, I thought I would never have joy in my life again. I thought, how could I have joy? I’m terminal, stage IV cancer, how could I ever have joy in my life? But that’s so wrong. I didn’t know it at the time, but that was one of the things that was pulling me down. I thought, I’m never going to have a great life. But you know what? I have an amazing life. So, so amazing.

For those that are just recently diagnosed, of course you need to go through all that. Can I say bad words? No. You know what I mean? You have to go through all that stuff, and you come out of it as a better person.

Lesley Kailani Glenn [00:08:12]

I just want to sit here and listen to Katherine talk because I’m 13 years and she’s over 20 and I’m like, man, I still have a lot to learn.

I am the same way. It took me a couple years to really wrap my head around having the disease.

My very first year, it was rough. I was in and out of the hospital, I contracted sepsis. It was really bad that I had to give up my full-time career. And I ran a nonprofit, which was doing therapeutic art in the prison systems in Southern California. I loved it. It’s what I wanted to do for the rest of my life. And that was all taken away from me because I couldn’t do it anymore.

It took me, I would say a good 3 1/2 years to really wrap my head around who I was as a person. Just who Lesley Glenn was as a person, without wearing the mom hat, without wearing the sports mom hat, without wearing the CEO of a nonprofit hat. And I had to get to the bare bones of how I wanted to live my life. Because when I looked out and I tried to reach out for help, and I feel like it was back in the olden days, right? 2012. Ibrance wasn’t even out yet, and there was nothing for stage IV patients. They would all tell me, “I’m sorry, you’re stage IV. We don’t have anything for you. Come back when you’re done with treatment.” And I’m like, wait a minute, I’m never going to be done with treatment.

So I had to really curate how I wanted to live my life, and that took a bit of time. And I’m still curating as I go along because there’s things that I could do even 3 years ago that I can’t do anymore because of the disease. I feel like I’m just ever evolving into the person that I want to be.

I will say that I am my biggest inspiration because I want to inspire my own life so that I have the hope to live on.

Katherine Contreras [00:10:30]

That’s great.

Eliza Park, MD, MSc [00:10:36]

Lesley and Katherine, what I’m hearing both of you say is that the adaptation to this diagnosis was not instantaneous and that it took some time, some ups and downs. Is there anything that anyone could have said to you or told you in those beginning days to help you on that path towards living with this and not necessarily seeing it for all the fears that it can be?

Katherine Contreras [00:11:10]

I think, for me, it was more of an introspective process to come to terms with my cancer and that I could live with it in a good place. I don’t think anyone could have really told me, you should do this or it’s going to get better. I think it was all work I had to do for myself. And it was hard work, but it paid off.

I really think that you have to look inside yourself and do some work to get past that devastation.

Lesley Kailani Glenn [00:11:49]

For me, I definitely did not have anybody. I had all of my support system. I had my good friends. I had people throwing books at me, how to heal myself instantly, how asparagus juice is going to save my life. I had all of those things coming at me all the time.

You know what? I did drink asparagus juice. Let’s be honest, I was desperate. I was like, well they say it work, it might actually work.

Once I started to learn about my diagnosis, I realized that, mm, I don’t know. So I had to go and seek out support. And back then, I think it was Listservs, through the internet, and I met my mentor, who has since passed away. It also makes me emotional. Her name is Jill Cohen. And I met her in person at my first LBBC conference here in 2014 and totally broke down. Couldn’t believe that there were other people in this room that were living with the same disease that I was. It was overwhelming. But through that I started to be inspired and encouraged and educated in a way that I needed to be educated to be able to move forward with living with the disease.

Eliza Park, MD, MSc [00:13:15]

So you’re saying that there’s no pill that will just magically change that.

Lesley Kailani Glenn [00:13:20]

No magic pill, no.

Eliza Park, MD, MSc [00:13:23]

Both of you have alluded to just how much the treatment landscape has changed over time, including or not, asparagus juice. I think for so many, when you’re first diagnosed, oftentimes I think the treatments are almost made for you. And as things evolve and/or just how we tolerate it, that can change, and your input and your priorities matter more and more.

I’m wondering if you can talk a bit about what kinds of things have you considered and what you consider now when you’re making these decisions.

Lesley Kailani Glenn [00:00:]

I guess for me, it’s definitely quality of life. My oncologist and I, we have a really good rapport, we get along great, and she always will ask me, “What do you want to do, Lesley?” Because she knows that she might suggest something, and I’ll be like, “Well have you read this research?” So I really feel like I am the pilot in my airplane and my oncologist is my co-pilot. And if I haven’t really considered something, she will let me know or show me something else. But ... my mind just went blank. … Chemo brain!

Katherine Contreras [00:14:54]

I think the pilot, co-pilot was great though.

Lesley Kailani Glenn [00:14:56]

OK, thanks!

Katherine Contreras [00:14:57]

I’m going to use that.

Lesley Kailani Glenn [00:15:00]

But as research continues, there have been some real bummers for me because I don’t have an ESR1 mutation. So some of these new treatments, like oral SERDs, are not available to me. But now they’re coming out with other SERDs that will be available to me.

Whereas we’ve already talked about what my next treatment could be, and it looks like I’d be back on IV chemo. And she wanted me to go on Enhertu and I said, “No, not yet. I’m not done with oral.” And so based on the MAINTAIN trial, I’m going to go back on a CDK 4/6, and we’re going to see if that works. I went from Ibrance [palbociclib] to Xeloda [capecitabine] and then I’m on Kisqali [ribociclib] now, and I’ve been on Kisqali for a year and it’s been working. So fingers crossed.

Eliza Park, MD, MSc [00:16:00]

One clarifying question because what you just described is, one, incredibly well-informed. And I can imagine that not everyone will have that same degree of confidence in voicing their opinions and their perspectives and saying to their oncologist, “Not yet.”

And I’m wondering what’s helped you to do so, and was that something you were always able to do or did that come with time?

Lesley Kailani Glenn [00:16:24]

That’s a really good question. So I think that it is in me innately, to stand up for others. I was used to standing up for others, I wasn’t used to standing up for myself. So that took time and some courage, and then some being educated.

The more I was educated about my disease, the more I felt confident. The more that I talked to other people, the more confident I got. For those of you that are here at your first conference, you know you’re going to gain so much education and empowerment that, maybe you’re not going to go back and tell your oncologist, “Well I know everything,” but you’re going to know at least two things when you walk out these doors that you’re going to have in your tool belt to take with you the next time.

There’s lots of organizations and resources like LBBC, and a shameless plug for Project Life where we want to teach you how to be your best advocate. That is our goal.

Katherine Contreras [00:17:26]

I just want to make a comment that you had all these abbreviations, and a lot of people were probably like, “What?”

That comes with time and with treatments you learn all these acronyms. So don’t feel bad if you don’t understand them. because they just come with time.

I forgot what the question was.

Eliza Park, MD, MSc [00:17:52]

To be fair, I might have as well. Does knowing that so much has changed over treatment and what you think about what might be best for you or what you want to prioritize or consider? How has that changed?

Katherine Contreras [00:18:10]

I understand. I love the pilot, co-pilot. I’m to the point now with my oncologist that we make decisions together. I tell her, “OK, I’m going to be taking a 6-week break. I’m not going to do any treatment for 6 weeks because my body is exhausted.” And she says that’s what you need to do. You need to make sure you feel good.

We’re trying to do treatments that are less toxic, that are easier to live with. I’ve had treatments in the beginning that were very toxic and caused kidney failure and I was on dialysis. So I think that 20 years ago they were just saying, we’re just going to push what we can to this patient and see how many years we can get. And I believe now, in 2025, you’re looking more at quality of life. How can we still treat this cancer and give you a wonderful life?

I see that difference from when I was first diagnosed. Also, they only used single agents in the beginning, and now everything is combined. Everybody’s on like three different drugs. And I think that’s what’s keeping us alive longer.

I’m talking to people here and they’re like, “Oh yeah, 16 years.” “Oh yeah, 12 years,” “10 years,” and it’s amazing because I didn’t see that in 2004. So I think that’s a big difference.

Eliza Park, MD, MSc [00:19:38]

Both of you sound like you have very collaborative relationships with your oncology teams, which is wonderful. And, I can say this because I went to medical school myself, not everyone is equally as collaborative. So, for folks who may not have quite as understanding a relationship with their clinical teams, what suggestions do you have about navigating that relationship?

Katherine Contreras [00:20:09]

I feel that if you aren’t comfortable with your oncologist, that you seek out a second opinion. You need to have that feeling inside that this is right. That’s so important to have a good rapport with your oncologist. And if you don’t have it, then maybe you need someone else. Maybe that doctor is a wonderful doctor, but not wonderful for you.

If you’re not having that great give and take with your oncologist, maybe search out a second opinion and do what you can with that.

Lesley Kailani Glenn [00:20:41]

Yeah, I feel the same way. I don’t need my oncologist to be touchy-feely with me. So that’s OK for me if she is maybe not as emotional as someone else. I mean, she’s very caring. But maybe someone suggests a really great oncologist and maybe their personality doesn’t work out for you, that’s totally fine because you want to be comfortable to be able to share your experience with your treatment because you are the one going through it. And you want someone that will be able to listen to you and not pooh-pooh away your side effects. “Oh, that’s unusual.” Or, “Oh, that’s never happened.” Well if it’s happened to you, it’s happened.

Eliza Park, MD, MSc [00:21:33]

Both of you have very much described how researching and understanding your own treatments and your own body has been really important. I’m wondering how have you, what kind of things or people or resources have you sought out to better understand your acronyms, your lab results, integrative therapies, clinical trials?

What have been some of your go-to resources or people in your lives to find that information?

Katherine Contreras [00:22:12]

Years ago I put on my email a Google alert for metastatic breast cancer. So every day I get an email, and then I click on it and there’s different things to read. It might be about clinical trials; it might be about a new drug. So that’s one way that I keep up on what’s happening.

Some of it just comes with experience, like all the acronyms, you just learn them because everyone else is using them. You just immerse yourself in it. And you talk to your peers and that’s so important to have somebody to talk to. This is what I’m experiencing on this treatment. Have you experienced this? How did you deal with it? What’s your opinion about that? So I think it’s really important to get with your group and get with your people and talk about what’s happening with you.

I think it’s so important to be in an MBC-only group, not a breast cancer, all stages, because you’re dealing with different things, and you want to be with your people. So those are my ideas.

Lesley Kailani Glenn [00:23:21]

Yeah, I would totally agree with that. I took, when someone would say an acronym, I remember it and I’m like, “Oh, I’ve got to Google that.”

So I learned the same way just with experience. And I started to seek out people like Katherine who’ve lived longer because their experience was different than my newly diagnosed experience.

Then I wanted to start advocating. So I jumped into advocacy with both feet, and took every single training there was and tried to just soak in as much information as I can. But the reality is, is that I have really, really smart MBC friends that if I don’t understand something I can say that totally went over my head, can you please explain it to me in a way that I can understand it?

Katherine Contreras [00:24:23]

Try to surround yourself with really smart people if you can. That’s my, that’s my tip, that’s what I do. I find people that are smarter than me and then I can ask them.

Eliza Park, MD, MSc [00:24:32]

I think it’s good life advice in general. And the Google alert as well.

Just to speak to that, I will say that just on a personal note, having a child that was born with a significant birth defect, and I’m a physician in this system. And when there were issues, I did not go to his surgical team. I actually was going to very similar resources because they simply would not necessarily know some of the answers for these questions. Like, I need clothing that’s going to work for his body, and I have no idea where to find it. Or how to make it fit with his devices.

Katherine Contreras [00:25:17]

Your people. It’s your people.

Eliza Park, MD, MSc [00:25:18]

Absolutely. And there’s lots of your people here today.

Something that I was hoping we could also talk about is, for many of us, and I will put myself in that boat as well, it’s hard to ask for, let alone receive, help or support. And what is so real is that with treatment and with everything that comes with it, there’s always a need.

I’m wondering how the two of you have both been able to sustain the people and the resources and the networks in your life over the long haul.

Lesley Kailani Glenn [00:26:05]

I was really surrounded by a community of friends who, as soon as I got my diagnosis, rallied around me. They had a meal train going. They had someone coming over to clean our house. They had someone to be able to take me to chemo and someone to pick me up or stay the whole 5 hours that I was there. I felt very loved and supported.

While it was very humbling, I really needed it because I was really, really sick. And even if I tried my best, I wasn’t going to be able to get out of bed, get help getting dressed. So I needed them. And those friends that I had way back then, they’re still with me today, and I’m in a different place and I’m doing a lot better. But they’re always checking in, what do you need? Do you need me to come and see you? What’s going on? And I live away from them now. They all live in southern California. I’m in Oregon. But I know that if I picked up the phone and I said, “I need you,” they would be on the next plane out.

I think it’s the same with my kids. As they’ve gotten older, they understand now what it means for mom to have cancer. And they’ve been such a huge support. They’ve been on the telephone with me when I’m on calls with the doctors and trying to pick a new treatment. I always have felt like I was very well supported. And with my MBC family, I feel very much supported.

Katherine Contreras [00:27:53]

My story’s a little bit different. I think because of my personality and — I’m a mom, but you’re a mom too, and I was a teacher — I was very independent. People would ask me, “Do you need help?” And I go, “Oh no, I’m good.” I would say, except maybe three, every time I’ve gotten treatment, which I would say is like more than a hundred, I don’t even know, I’ve driven myself because I consider that my time. And it’s actually more so now since COVID.

COVID happened and you can’t leave your house, but I had to go get treatment and I’m like, “Yeah, I get to get out of the house.” And it became my spa day. Still to this day, my friends say, “Is it your spa appointment today?” And I’m like, “Yep, it’s my spa appointment.” They give you warm blankets, and they give you snacks. You’re in this chair and you’re just like [shrugs], so it’s like my spa day.

If someone came with me, I would have to entertain them and that’s taking away from my time. So I really enjoy driving myself.

I have wonderful children. I was pretty ill in November with a lot of stuff. And my son came down to make sure I was OK and helped me and went to the store and talked to my husband about being a good caregiver. So I have that support there. I have a lot of friends that know I have cancer, but I keep telling them, “I don’t need it yet.” “I don’t need it yet, I’ll let you know.”

So I feel like I’m supported, but I’m very independent. I just like to do things myself and have me time. So that’s how my chemo is, me time.

Eliza Park, MD, MSc [00:29:44]

You mentioned that you told your husband about how to be a good caregiver. I’m taking notes. And as well, for you Lesley. How much did each of you have to tell people what you needed or what was going to be helpful?

Lesley Kailani Glenn [00:30:06]

I never had to tell my friends what I needed. They could always anticipate what I needed because they knew me so well. Like, I would have one of my friends come over and the only thing we were supposed to do was nap. So she would come over, and we would just nap. She’s like, “No, it’s time for your nap.” So we would just nap in the living room. I always felt like my friends knew me.

However, my husband did not. And as sad as it is, I divorced him after 30 years because of it. The decision was very, very hard. We’d been married since our twenties. But I needed to do it for myself. I needed to do it for my mental health. I think I needed to do it for his mental health as well, because he did not see my diagnosis in the way that maybe other husbands see their wives going through a diagnosis.

While that was hard, that was a very good decision for me. It’s been over 2 years now. I feel like I’m in a better place.

Relationships change and that’s OK. Friends come and go. You may find that you’ve lost some friends when you are diagnosed. I did too. I was ghosted. But those that stuck around have stuck around no matter what. And even family dynamics change. When families don’t want to believe that you’re living with a terminal illness that could take you. You feel like you’re walking this tightrope, and if I could just encourage you I’d say stay true to yourself. Don’t try to be somebody that you’re not for somebody else because they’re not going through it, you’re going through it.

Katherine Contreras [00:32:12]

1. You all know that I’ve been on about 14 treatments, so I’m going to have to ask again, what was the question?

Eliza Park, MD, MSc [00:32:20]

I wanted to know, for example, you talked to your husband about being a caregiver. What kinds of things did you think he needed to know or that you thought would be helpful? And if there were other people that you’ve had to educate on what you need.

Katherine Contreras [00:32:38]

Right. So I’ve been married 44 years and yay for that. Right?

It’s been — you know marriage isn’t like a party every day. You all know. My husband doesn’t pick up on cues. So I do have to tell him what I need. And we finally have gotten to the point that I can do that and everything’s fine. But sometimes my son, who’s 37, has to come and have a talk with his dad and say, “Dad, remember, mom needs your help. She’s going through a lot.” So my son and my daughter are my advocates, and I also have a daughter with a disability, who has down syndrome and she’s 40 and she still lives with us. So we have that responsibility also, along with my medical needs and my husband’s medical needs.

I can tell people what I need now. I don’t need a lot, but what I need is to spend time with my people. And so that’s what I need, and they know that, so they say, “Let’s go do something.” So that’s a really big need to me to do with my people.

Eliza Park, MD, MSc [00:33:58]

I was not very helpful in that cue because I was still shocked that marriage is not a party. Actually my husband is at home, watching our kids.

Actually, of the folks here, who has children of any age? OK.

I assume that just because your children are over 18, you have stopped worrying about them completely.

Katherine Contreras [00:34:31]

Oh, of course.

Eliza Park, MD, MSc [00:34:32]

I’m curious about what it was like for your kids when you were first diagnosed and how they’ve navigated these waters along with you.

Lesley Kailani Glenn [00:34:44]

My youngest was a senior in high school when I was diagnosed. And each of my three kids took it very differently. When we shared my diagnosis, my oldest boy actually giggled. My middle boy was in shock. And my daughter would not leave my side.

It wasn’t like I was expecting them all to react the same way and to be something. I wasn’t asking them to be anything. I wasn’t asking them to do more around the house. I wanted them to just be with me. That was the most important thing to me. And because my boys were, like 19 and 24. My 24-year-old was already out living on his own. And my middle boy was figuring out life. While my daughter was a senior in high school, and I literally missed her entire senior year of high school because I was so sick. And she was a competitive cheerleader, and she cheered. And I didn’t get to go to any of her competitions. It was really, really devastating for me, even when I sent her on the plane to go away for college, that I didn’t get that time with my girl.

Now she’s turning 30, and she has really gravitated back to mom, which has been amazing for mom. But my boys have too. My oldest, he feels like he’s my caretaker now. He just turned 37. And my middle boy is just very levelheaded. He’s like, “Mom, how are your scans?” “Mom, how was treatment? How do you feel?” All of those little things, I just take it as, I’ve done the best that I could with my kids. I probably didn’t handle it in the best way all the time, but I did what I knew to do.

Katherine Contreras [00:36:58]

This is another thing that we have in common. My youngest was a senior in high school when I was diagnosed. And I felt like I missed his entire year. Not because I was very, very ill, but because I was still trying to work things out in my head, still come to terms with it. And I wasn’t emotionally there like I should have been. But he turned into a wonderful man, and I’m so, so happy that he did.

When I was first diagnosed, I feel like my cancer was like the white elephant over there in the corner. We didn’t really talk about it. I mean, everybody knew, but we didn’t talk about it. And I was pretty healthy, so you couldn’t tell that I had terminal cancer. They had found a spot on my rib so I was diagnosed stage IV, but I was still doing what I did. I was still teaching. So it wasn’t really talked about. And I think it was hard for everybody because it should have been talked about.

Now through therapy, I keep mentioning that and it’s like, yeah! It’s the best thing that can happen to you.

I’m going to share something. I had grown up in a very non-physical touch, I can’t think of the words, I’m sorry. So that’s how I was. And so when my kids became teenagers, I stopped telling them I loved them. And then I was in therapy, and I’m like, “What is going on here? That’s not normal.” And so like 10 years ago, I said, “Hey guys, I really, really love you and I’m going to tell you that every time I see you.” And they go, “Mom, of course. We love you too.”

It’s like normal to everybody else. But I had grown up in a family that didn’t tell each other that they loved each other, and they didn’t show each other. They didn’t give hugs. I felt loved, but I wasn’t told. So that’s something wonderful that came out of this diagnosis. It wouldn’t have happened if I wasn’t diagnosed. I would still probably have this wall between us. Now my kids call me very often, like once a day, my daughter, “Hi mom, how’s it going?” Because I went through a very difficult time and lost 20 pounds in three months and had a lot of stuff going on. So now they see, “Yeah, mom’s pretty ill. So we need to really focus on making sure she’s living a great life.”

Eliza Park, MD, MSc [00:39:27]

I think what both of you have shared through your stories is that when there are moments during treatment or diagnosis when it’s harder to be as physically and mentally present with our kids, I think most parents, quite appropriately, worry about how it might be negatively impacting them. It’s heartbreaking for the parent. Kids are much better at compartmentalizing. And also, I think it’s easy to focus on how we think it might be negatively impacting them.

But what we know from the data, from the literature, is that when kids have a parent who has cancer or has grown up with this, in many respects, they’re oftentimes far more emotionally mature. I think they can have an awareness and perspective that some of their peers may not have, because they have not had this kind of experience. And I think these are wonderful examples.

To make a quick plug about a couple things. There is an incredible program that’s being hosted during a conference in conjunction with Camp Kesem. And I think they’re going to somewhere fun in Philadelphia, but I can’t remember off the top of my head.

Also through LBBC, there’s a Reading for Reassurance program, and they will send books for your children, they’re by age, that can help with fostering some of these communications and conversations in a way so that they don’t have to feel quite so heavy or monumental, but they can just be something that’s integrated as part of life. Now trying to read to a high school senior is a different story, but perhaps you guys can tell us that.

What kind of changes have you experienced with your friends who are not living with cancer? What has that been like?

Lesley Kailani Glenn [00:41:31]

For my friends, there’s definitely those that want to learn more about what I am going through. For me, it doesn’t matter what they know about the cancer diagnosis. For me, it is that they love me for who I am, no matter the changes that I go through in my evolving of this human life. I think that that is probably the biggest change.

I would say that my family dynamics have changed a lot more than my friends that do not have cancer.

Katherine Contreras [00:42:20]

My friends, it’s just like, I’m just Katherine. Maybe they say, “Oh, do you want me to drop you off here so you don’t have to walk so far?” I go, “No, no, I’m good.” But I don’t see a difference with my friends. I’m so sorry. I am so sorry. That’s why I don’t teach anymore because that would just be a fiasco.

Wait, maybe I answered the question.

Eliza Park, MD, MSc [00:42:48]

You did.

Katherine Contreras [00:42:49]

OK, there we go. Let’s get a hand for that!

Lynn Folkman [00:43:00]

Hello. Can you hear me? All right, great.

We’ve got some great questions. So thank you for submitting them. Again, you can text those in.

One of the questions that came in is: “How do you deal with survivor’s guilt? We meet so many wonderful thrivers but then lose them.” And I know you mentioned some of this, Lesley, you talked about someone. “I try not to live in the sadness but live my life as they would want me to, to the fullest. Do you have any tips?”

Katherine Contreras [00:43:33]

That’s a good tip that you just gave us.

I have lost, I would say probably more than a hundred friends in 20 years. I’m in a lot of different groups. It’s sad for me to say that sometimes I’m just like, OK. It’s hard for me to keep grieving and keep grieving and keep grieving. And I do feel bad that maybe I’m not giving them what they need, having the feelings that I should be, but I have to protect myself. And that’s how I have to live my life. I love that person, and I love their family. And then I need to let it go because it happens so often that I think it would just destroy me.

That’s the way that I deal with it. And I don’t have survivor’s guilt a lot. Because we all have stuff in our lives and we’re all doing our best. They did their best. They fought so hard. And I’m fighting hard. So I don’t really have the guilt. Maybe I’ve gotten past that. But I do have to like not put myself in each one because it’s too hard for me. It’s sad, but it’s just too hard for me.

Lesley Kailani Glenn [00:45:20]

I think in the beginning of my diagnosis, I took each and every death really personal. But like Katherine, because you’ve watched so many of your people die, and I’ve lost a lot of really good friends, especially in 2024, that were just downright devastating.

What I have learned for myself is to feel my feelings in the moment. If I need to bawl my eyes out and read their text messages over and over and over again, then I’m going to do that. And I don’t care how long it takes me. I need to feel all those, I need to feel the friendships and the conversation and the times that we had together. And if I allow myself to feel it, then I’m able to move on from it.

But that’s just me. I just know that if I put something on a back shelf saying I’m not going to think about it, that it’s always going to be screaming over my shoulder saying, “I’m here, I’m here, I’m here.” So I’ve learned to really embrace those times.

And there’s still times when I’m wearing a piece of jewelry that someone gave me, or I see a friend’s picture on the internet, or I read or see a video that someone’s done that I have to stop and just take pause and say, “I’m so grateful that you are in my life.” Because I really, truly am. And whether I knew them a little or a lot, I find that I just need to take a moment to just say their name out loud. Maybe for them, but also for me.

Katherine Contreras [00:47:17]

I just learned something from you, Lesley, and thank you so much. I really appreciate what you just said. It’s going to really help me in the future.

Yvonne Williams [00:47:33]

Moving on to our next question, and you probably have already touched on this. A lot of these questions are personal, but then your stories are personal. A couple of questions were: metastasis. Where have your cancers metastasized? For both of you, if you can answer that.

Lesley Kailani Glenn [00:47:54]

So I have bone only. Throughout my spine, in my ribs, in my shoulder, I just had part of my scapula taken out because it was eaten away by the cancer. Iliac, hip. So yeah, I’m bone only.

Katherine Contreras [00:48:12]

I’m also bone only. And I think that’s what’s keeping me here. But I have also distant lymph nodes that we watch. I just had a progression to my spine and we radiated it and it shrunk to nothing. But then my three vertebrae collapsed, so I had to have surgery to fix that. But it is bone only.

I forgot to say that I am HER2 positive, and I am hormone receptor-positive. But in the beginning, for the first like 15 years, I was HER2 negative. So it mutated to HER2 positive.

Lynn Folkman [00:48:56]

Thank you. “How do you manage years of the waiting for the progression shoe to drop? Sometimes the waiting for it is so difficult.”

Katherine Contreras [00:49:12]

I’ve come to terms with this and I know there’s going to be progression, and I know that I’m going to be able to deal with it. And I know that there are drugs out there, and I’m like, “OK.” When I have a scan, I don’t become anxious about it. OK, let’s do the scan. And when I see the doctor we talk about it.

But it’s because I’ve had so many years and so many treatments that I feel OK about it. “Oh, progression. Yeah, that’s kind of sad. But what am I on next? What drug am I going to use? And I’m going to be OK.” That’s what I tell myself. So that’s how I get through progression.

Lesley Kailani Glenn [00:49:55]

Once I was diagnosed and I had my first really hard year, I was on letrozole only and I was no evidence of disease. And I was no evidence of disease for 5 years. And after 5 years I’m like, “OK, that’s it. I’m not doing this anymore. I don’t like the side effects of letrozole”. The joint pain and all of that.

We had just moved to Oregon. I met with my new oncologist and I said, I want to go on surveillance only. She went through my history and she was like, “OK, let’s scan you first.”

Guess what happened?

I had progression. And I felt like I was diagnosed all over again.

Similar to Katherine, I still get nervous when I have to do my scans. Even though I’m 13 years out. Soon as I get back from Philadelphia, I have to go have my scans. I have never reached no evidence of disease ever again. And I’m OK with that now. But honestly, I cannot tell you if I will be OK if I have more progression. I just don’t know until it happens. I can deal with the many broken ribs I’ve had and my broken shoulder and little light ups here and there. But sometimes I wait for the other shoe to drop, like, when’s it going to show up in my lungs? When’s it going to show up in my liver? And that’s just the reality that I live with.

Katherine Contreras [00:41:57]

I want to say I’ve never been NED, no evidence of disease, or no evidence of active disease, but I’ve been stable. Stable Mabel, I am so happy when I’m stable because OK, I can live like this. So to me, stable is like, yeah!

Eliza Park, MD, MSc [00:52:05]

I was going to say that it’s, I think for anyone, for anything, it can be really challenging to focus on the “what is” rather than the “what if.” And in those moments when you find yourself stuck on the what ifs, what helps you get back to the here and now and the present moment?

Lesley Kailani Glenn [00:52:28]

Sticking my bare feet in the grass. It really is. Nature has become a very intricate part, especially during my first 10 years. I took up backpacking and hiking, would backpack all over the United States. Loved to be in my tent by myself with a full moon. And nature became someplace where I didn’t have to think about anything else, but that I was just this one small speck in such a huge universe. Since my shoulder surgery, I can’t carry my backpack anymore. And that has been a loss for me.

I still want to be grounded, and I still want to be out in nature. So I have a huge backyard where I can put my feet, bare feet, in the grass and three huge trees where, if I want to, I can just lay back there with my dog licking my face and watching the leaves rustle. Or taking a walk, even around the block, or just doing a little trail near my house. If I feel the starting to rise stress, it’s like, take your shoes off and get out in the backyard and walk around.

Katherine Contreras [00:54:01]

I really don’t worry about what if. It’s true, it’s the honest truth. I really don’t worry about what if, because I have so many experiences of being OK. It’s been hard. I’m not going to say that it’s been easy, but I’m still here.

And one of the ways that I de-stress, I love the warm sun on my face, even if it’s cold outside and you get that sun on your face and you’re just like basking in it. And that is my thing to do, always. If my husband says, “Do you want to go?” I go, “Is the sun out?” So I can sit in the car? Or sit out in the sun?

That’s how I determine what I’m going to do in my life. Is the sun out and I’m going to be able to get some warmth and some vitamin D. Yep. I’m all for it. So I’m really into the sun and being warm and nature. I’m not able to do as much hiking as I did 5, 6 years ago, but my friends still say, “Hey, we’re going for a short hike around the lagoon. Do you want to come?” And I think I’m ready to get back into it.

Eliza Park, MD, MSc [00:55:25]

Knowing that we have very little time left, I think I will ask a final question. For many individuals, this is their first conference, it’s very exciting. What advice or what would you recommend for folks in terms of getting the most out of their experience here?

Lesley Kailani Glenn [00:55:45]

It’s OK to feel overwhelmed. It’s OK to feel like you’re alone, but know that you’re not.

It’s OK to be tired and need to take a break and go up to your room and take a nap. Because these sessions are virtual, and you can catch it on your computer or on your phone.

And just know that you’re not alone, not one of you are alone. We’re here, we’re with you, and all you have to do is say hi, or we’ll come say hi to you. But we really are a community. This is a really stupid disease with the best people.

Katherine Contreras [00:56:30]

For sure. And my advice is, if you came alone, try to find one person that you can exchange numbers to text with and that can be your person until you are able to meet other people. So just try to find one person that you can talk to. Maybe it’s a long-time survivor, maybe it’s someone else that’s newly diagnosed, but I think that’s going to be a really good thing for you that you can find someone to get support with.

Eliza Park, MD, MSc [00:56:59]

I want to thank you both very, very much for sharing your experiences.