Live Chat: The Courage to Choose Life on Your Terms with Dar Finkelstein

In one of the most powerful conversations we've ever recorded, Dar Finkelstein—known throughout the metastatic breast cancer community as "The Queen of Joy"—shares her decision to stop treatment and transition to hospice care.

After nearly seven years with metastatic breast cancer and 20 years total since her original diagnosis, Dar opens up about the impossible choice many in the MBC community eventually face: quality of life versus quantity of time. With remarkable candor and grace, she discusses how she made this heartbreaking decision, how she told her oncologist and family, and what brought her peace.

In this episode, Dar talks about:
• The moment she knew it was time to stop treatment
• Navigating the "honeymoon period" after ending chemo
• How her faith and joy mission sustain her through this transition
• Practical advice for planning end-of-life care
• The importance of open conversations about death within the MBC community
• Finding peace, setting priorities, and still choosing joy

Trigger warning: This episode discusses end-of-life issues, hospice care, and death. It's intended for mature audiences living with or affected by terminal illness.

Dar's vulnerability and wisdom offer a roadmap for others facing similar decisions. Her message is clear: death is a natural part of life, and we can face it with dignity, purpose, and yes—even joy.

Hosted and produced by Abigail Johnston and Melanie Sisk.

Thanks for listening. If you enjoyed the episode, subscribe and leave a review — it really helps. Follow us on social media @livefromstage4 and visit our website at www.livefromstage4.org for show notes and links.

 Your support helps us continue to share important stories and advocate for those living with metastatic breast cancer.

Until next time, take care and keep pushing for progress.

Transcript

SPEAKER_03 0:09

Could a cure for cancer be closer than you think? Welcome to Life from Stage 4, where MBC takes center stage as we talk to experts, share inspiring stories, break down signs, and shine the spotlight on what matters most. Because when it comes down to it, this part for us and by us is all about us. Hi friends, I'm Victoria Goldberg. Welcome to Light from Stage 4. Today's episode is about the impossible decisions we face. I want to thank my friends Abigail Johnston and Melanie Sisk, who produced and hosted this heart-wrenching episode, and especially our guest Dar Finkelstein, for her courage and vulnerability in sharing her story.

SPEAKER_05 1:37

Despite some recent claims that MBC is a chronic illness, and it can be, for a very small number of people, there is only one end to the experience of living with a terminal illness, and that is death. Sometimes the cause is cancer, sometimes it's the medication, sometimes our bodies are just done.

SPEAKER_02 2:08

And we can't overstate our gratitude to Dara Finkelstein for her willingness to talk about how she decided to stop treatment and enter hospice, how she is prioritizing quality over quantity and still finding joy in all this mess.

SPEAKER_00 2:53

Prior to that, I had early stage, and that was 13 years before I was diagnosed with MBC. So this has been almost 20-year, you know, situation I've been in. And I've been with my husband for 20 years. So, you know, it's sort of we've grown together during this experience. And I've recently come to this situation where my treatment was not to the level that I wanted it to be anymore, as far as my results. And so I've had to make some difficult decisions that almost all of us here living with NBC are going to have to make. And that's what I'd like to talk about today.

SPEAKER_05 4:06

And we are so thankful that you are willing to talk about that. Would you tell me a little bit about peanut butter and jelly?

SPEAKER_00 4:12

My husband and I are known as peanut butter and jelly. Actually, that's what we call ourselves most of the time. It's great whenever you're in the grocery store and you can't find the other one, you know, and you just yump peanut butter. And I'm always worried that everybody in the store is gonna rush to the peanut butter counter. But we began clowning after we met, and we did volunteer clowning for charities like Make a Wish. And that's been one of my greatest joys in life was to make a child smile that is going through really difficult things. And I didn't realize how much it was going to impact how I felt about my MBC diagnosis. Because, first of all, it is during times that are really difficult for us as a couple, we would fall back on peanut butter and jelly and try to bring levity to the situation to help us get through. By the way, he is peanut butter, and he says that's because he's crunchy and I am jelly. That's because I'm sweet.

SPEAKER_02 5:27

So, Dar, if you're the jelly, what flavor jelly are you? Strawberry. No doubt. Strawberry. So did you start the joy thing? Did you start that before you were diagnosed with metastatic breast cancer?

SPEAKER_00 5:44

The joy mission, I started it after I was diagnosed. I knew that I gotta pull up the big girl panties here and you know stop moping around. And that is what I landed on. It's what just kept coming up for me. And I wanted to have joy, I wanted to give joy, and I wanted to share joy so that others could learn how to have joy in their life, no matter how bad it is, no matter what the circumstances were. But as I look back on things and things that I posted on social media way before I was diagnosed, a lot of things were joy-centered quotes and those kinds of things.

SPEAKER_02 6:35

You are known as the queen of joy within this community for sure. And also the pictures, do you draw those yourself that you post with your joy?

SPEAKER_00 6:47

Yes, there's a project called the Hundred Day Project, and I stumbled across it a few years ago, and it was to create something expressive, some type of creativity. It could be writing, drawing, whatever. And so I decided to do it a few years ago, and I started drawing my little joy drawings, my little girls and boys, and then attaching a quote onto them. And I did that for a hundred days the first year, and then the next year I did it again, and by the third year, I did not have the motor capability to be able to do those things, but I've resurrected them for my social media postings, and you know, they've been a great sense of joy to me doing those drawings.

SPEAKER_05 7:45

Well, they certainly make everybody smile, which is probably one of the intentions behind it.

SPEAKER_02 7:51

Now, one question I think a lot of people want to know do you feel like as time progresses, your quality of life goes down each time you change treatment?

SPEAKER_00 8:02

So it was sort of like a roller coaster. I'd I'd get on one and I'd be feeling good, but my cancer did not respond to it appropriately. And I'd be very sad that I had to go to another one, and I'd be very, I'd be frightened every time that happened. You know that quality of life can't change. And I had some that were just very difficult. And unfortunately, I had a couple that were very difficult, but I was responding. And I would, I would just pray that those ones that were good would work a long time. And the ones that were bad, I thought, please tell me that I have progression because I was prepared to say, hey, we're gonna no, I'm not gonna keep on with this. And it had progressed, so I didn't have to make a decision like that on something that was working for me.

SPEAKER_05 9:04

In these changes, the progression, having to change treatments. What were the things that helped you cope with that?

SPEAKER_00 9:17

Well, I try to have a mental plan to go along with the change. I would know the scan results before I'd be going in and meeting with my oncologist. She would talk to me beforehand. I was I was very fortunate that she would call me every time the same day that my scan results came through. And so I could start thinking about. We had, of course, talked about what's next. I really would do a lot of research looking. One of the things that were very helpful were some of the Facebook groups that talked about the side effects of things. So I could mentally prepare that this is a possible side effect. I would up my my times that I did meditation a lot of times. Instead of just in the morning, I'd have my phone set to a 12 o'clock alarm at noon, and I would make sure to break for 10 minutes because you know it's a very uh overwhelming thing sometimes. And it it's hard to get your head wrapped around it over and over and over.

SPEAKER_05 10:35

You mentioned that at times progression was almost a relief that the side effects of a particular line were so difficult that you almost welcomed progression. Which is not usually how people talk about progression. Would would you talk a little bit more about that?

SPEAKER_00 10:51

I had in my mind for a long time that my goal was not to have a whole lot of years. It was to try to have as good a quality of life. And I did keep that top of mind. I had a a lot of support with family, with friends, especially in the NBC community. And so I I knew that no matter where things went, I would have support there for myself. Sunday evening, I always would sit down and think about the week I just had. Very hard.

SPEAKER_05 15:03

How did she respond when you said I'm done?

SPEAKER_00 15:07

She had tears in her eyes. And she wanted to, of course, make sure that she did say, Well, you do have this as a possible option. And we had talked clinical trials, and I had flat out told her no. I did not have the energy in my body to do that. So whenever I I told her, she did her due diligence as far as you know, telling me the the possibilities. And then we went on to talk about what I wanted to do and how I wanted to do things, and just really having that whole conversation. And she was very supportive of my decisions. She did not try to talk me into anything. When we were done talking, it took us about 15 minutes to compose ourselves to be able to walk out the door. It was a it was like losing your security blanket. It was that was a very hard thing. Making the decision to do it wasn't that hard. But when it came to the reality of walking out that door, it's like it's never going to be the same.

SPEAKER_05 16:34

How was it then talking to your family about your decision to stop treatment?

SPEAKER_00 16:39

It was it was difficult. They were very supportive. I know when they weren't around me, they had a support system that they could be brutally honest with. And I struggled with that with friends. One of my MBC friends said to me, You're feeling guilty about making people cry, but she said, You've instilled in them so much joy. And so what they're doing, what you're seeing, is them sharing the joy back to you. And she said, It looks like tears, but she said, That's their love coming back to you. And so that helped me get over that. I'm making people feel bad, kind of thing.

SPEAKER_05 17:49

And what about peanut butter? How is he handling all of this?

SPEAKER_00 17:54

He and I have been extremely open. And he's been the one that is a catalyst a lot of times to even bring up subjects that I'm not sure if they're a good subject, you know, to bring up. And so he has been able to sort of as close as he could walk in my shoes during this. He would say, sometimes, I really don't want to lose you. I don't want you to go, but I completely support what what you're choosing to do. And even sometimes I'd say, Well, do you agree with this? And he says, I agree with you. He said, It's your life, you're making your decisions. So I've been very fortunate in that regard. Very, very fortunate. And I wish I could wave a magic wand over everybody else's support system. I wish I could wave a wand over the people who don't really have a support system of any sort. I know there's there's a lot of people that don't have the situation I have.

SPEAKER_02 19:33

It was at a Charlotte Metzers Light Up NBC event. We went out to dinner, the whole group, and then we went in downtown Charlotte and looked at all the lights for Light Up NBC Day. And I remember her then, specifically because we had a mutual friend, Libby Miller, who was actually one of the first five members of the Charlotte Metzers with Dar. And then Libby became my teammate here in our area, the Piedmont Triad Metsters. And then I saw Dar again at one of the LBBC conferences. And anytime you saw Dor, she always had a smile on her face. She was always friendly. So her being the queen of joy was definite something that you could see. You could see the joy just spewing out of her. She was always so friendly and always smiling. That's one thing I can say about Dor. You talked earlier about when you were in treatment, about praying that you didn't have to stay on a treatment that was not good for you and didn't make you have good quality of life. So that brings me to the question about fate. Can you tell us what is your tradition of fate and has it changed over time with metastatic breast cancer?

SPEAKER_00 21:09

Yes, it has changed. I I am a Methodist and I rely on that faith daily, even before MBC. But I would say in the past few months. It's not so much that the faith has strengthened, but it is a refuge for me. It helps me have the unwavering ability to make this decision to stop my treatment. I had the unique opportunity that my mother was diagnosed with pancreatic cancer and she was taken off all treatment in, I believe it was. And she didn't die until m the following March. And she and I would go to coffees. And we would have a lot of really in-depth faith-based conversations. And that's a true gift, I think, that I was given was that time to be able to have really open conversations. Because my mom wasn't a terribly open person. But when we would have our coffee times, we would just sit down and talk about fears and talk about what do we think is going to happen and you know, just all of that kind of thing. And I find myself in the last few months falling back on those conversations and how blessed I was to have them. And I rely, as far as my faith, more on friends that I have that have the same beliefs as me than I do on a pastoral figure for a lot of that now. I think I've got myself pretty planted, you know, now that I'm not asking as many questions. I'm just relying on what I know for me.

SPEAKER_05 23:31

So let's talk a little bit about the practical pieces of things because I know you mentioned the loss of your oncology team. And we know that moving into hospice care means that not only are you not receiving the chemotherapy treatment, but you're also shifting your medical team to a different group to the hospice doctors. How has that been for you?

SPEAKER_00 24:00

I talked it in depth with my oncologist. And I talked with my radiation oncology team because I did have gamma knife after I had made the decision not to do chemo anymore for my cerebellum. And I wanted to do that just so that I'd have hopefully the best chance of maintaining my balance going into this. So I talked with the palliative team about a lot of questions that I had going forward and how do you do all of this and what can you guys do? And I found out that once I sign on, I can't utilize their services for anything. And so I can continue with the same therapist. Some of that I wasn't aware of until I got down to the nitty-gritty of having to do those things. I was pretty familiar with what hospice has to offer because I went through that with my mom. My mother lived near me, so I'm using the same services. So it's going to at least have some familiarity. So I'm trying to get my ducks in a row. I got all my meds ordered that I could possibly get ordered in case there's a thing happening that I can't get one of them. We have a really good home health care, you know, people that will come and relieve Ted. My metastatic group has a sign-up because my husband won't let me stay by myself because of falls and my lack of balance. So they have a sign-up sheet that they're using to do my babysitting, I call it.

SPEAKER_05 26:15

As you are shifting into this next chapter, this next phase of your life as you transition towards death. Have your priorities changed?

SPEAKER_00 26:29

Yes, definitely. How so? I don't need big things. The world's getting smaller for me. My main focus is I want to spend time with family and friends. And I'm so lucky. My calendar last week was so full that I had to start making sure I was balancing it and not doing too much. I have to balance because I can't go out two days in a row. I'm just too tired. And I just don't feel good at all if I do that. But the family and friends is really what I want in life. But one thing that I'm finding that I want is some really some time alone. I've never been a good alone person, but I've learned that during this not just this, but during MBC, that I need that quiet time. I need that time alone. So now it's getting nice enough here that we have a sunroom in the back. And Ted got a heater or air conditioner for that for me. And so I can go out there now and hang out. And so I think I'm going to sort of put a little rule with Ted when he's here that if I have that door completely shut to that room, he can see me there, you know, it's open. And that that means I need some quiet time. But nobody's around, nobody's talking to me, nobody's interrupting me. And that's now become a big priority for me is to have quiet time. My whole world's become very simple. And it's it's very different and it's a bit humbling.

SPEAKER_02 28:28

You seem to be very purposeful with your life now, and you seem to have been very purposeful all along. So, in thinking about the days to come, have you given peanut butter specific orders for things that he can and can't do towards the end?

SPEAKER_00 28:48

A little bit, not big time. My concern is, and I saw this even with my mother, is that people's emotions are heightened and emotion to come forward and have a burst instead of people looking and treating things very calmly. And so that's something I want to make sure is addressed. So I just want to make sure that everybody knows my wish is that if they've got something they need to talk about and have a little burst of emotion, I want them to leave the room where I am. I don't want that kind of thing in the room. I've heard some people say they don't want anybody to cry in the room. I don't want that. There was a point in this whole process whenever I was making people cry because of what I was doing, but now I've come to terms with that. That's just part of the process, I feel. And so if people want to cry, I'm I'm okay with that. I mean, I don't want weeping and gnashing of teeth, kind of crying, you know, if people are are crying, I'm okay with that. I have some, you know, music, my go-to stuff. My daughter's helping me do a playlist now. I've never had a playlist, guys, in my life. I'm on the computer all the time. I'm always doing things, and I never had a playlist, so I've got songs that I want to put on it. And I said to my daughter, I said, okay, we've got a project here. I need a couple different playlists here for different subjects. And so we're working on playlists on this visit while she's here. My husband has always brought me flowers, they're just grocery store flowers, but I made a vase when we were on a cruise ship one time, and I like to keep that vase full. I found a smaller vase too, though, so because I know that room will get crowded. And so I want to make sure I can open my eyes and see some fresh flowers, even if it's just, you know, three, four in a little wee vase. So I want fresh flowers.

SPEAKER_05 31:19

One of the hallmarks of this discussion has just been your openness and your willingness to talk about things, meaning things surrounding your death or leading up to your death. But for people who struggle with that, who almost feel like they're speaking it into being by by talking about it, what would you say to someone who is struggling with having these conversations?

SPEAKER_00 31:47

I would say find someone that you really trust if you have that. And start out by saying, I'm going to be talking about something if it is uncomfortable for you to the point that you don't want me to talk about it, let me know. And then keep searching for that person. I have found the easiest people to talk to are people who have NBC. I mean, the first person I met that had MBC and I was talking to them, I remember just feeling this release, you know. It's like I didn't have to go through all the stuff, you know. They get it right away. And so maybe they haven't experienced this, maybe they haven't even thought about it too much in depth. But find someone that you can talk to. It may not even be somebody that you know presently, but try to find someone that you can talk to. My therapist also was someone that helped me with talking to people about this and how you approach it. And I hope if it's someone that is in the MBC community talking to me, that they can learn from the conversation something.

SPEAKER_02 33:16

It's maybe not what they'll choose to do, it's maybe not how they'll choose, but they at least know then a little bit of a path to start to follow and to think about the thinking about our listeners who have NBC, who are not as far down their journey as you are, what's something that you can share with them as far as advice on what is coming ahead?

SPEAKER_00 34:07

I would say one of the biggest things is to first of all find a person that you think that you can start to develop a relationship with, that you can both be very honest with each other. The other thing is making sure I made sure I had an oncologist that I trusted fully and keep that line of communication going. Start talking about these things way before you have to actually do them. What I remember one day pretty early on that I said, I'm watching some friends of mine that are hitting the end of life. I've watched a number of them. They just got so sick they were in in the hospital and they never recovered. And I think I knew in my mind if I can control that at all. I don't want to get that sick at the end. And I want to be able to have what Ted and I called the honeymoon period, which is what we're going through now. I don't feel sick. I have a distinct lack of energy, but I feel good. I'm not waking up with that chemo feel in the morning. It's the best I've felt in a couple years, I will tell you. But in my mind, I was hoping I could have that be what happens at this point. But I wanted to talk with my oncologist about that. I wanted to say, when you stop taking treatment, I've noticed some people just almost immediately within a month or so, they're gone. What do you see? So she told me a wide variety of things she has seen. She said, I had one woman that was setting little goals for herself. She wanted to go to this, she wanted to do this, and she ended up getting to six months after she stopped treatment that she was able to keep meeting her goals. And I know all of this is so individualistic. You know, what works for me as far as how I approach things is totally different. You don't have to be open to the world like I am. You don't have to share it with anybody. I chose to share it publicly to the world. It was on my you know, joy page that I'm there. But that's me. That's how I've lived this whole time with NBC is being open. But that's not right for everybody. You just have to know sort of in your heart, start thinking about it, start knowing, start trying to normalize it a little bit. Find webinars or seminars or something that addresses those kind of things and try listening to those things so that it's a little more part of your mental conversation with yourself. I have a feeling you've thought about that a little bit. I have definitely thought about it. We'll fall back on my religious beliefs for that. I did have several in-depth conversations with my mom whenever we were having our coffees. And I have to say, I liked latching on to some of the things she said. I said, So how am I gonna know you when I get there? And she said, I don't believe our bodies are gonna look like our bodies. She said, but you'll be able to know my heart and you'll be able to find me. And she said, so that's what she believes. It's not like, you know, and I said, so grandma and I aren't gonna sit there and play cards. And she said, there's gonna be some level of connection. And she said, I'm not sure exactly what it's going to be like. And I really liked that thought that we'll know each other by our hearts, and that's what I believe.

SPEAKER_05 39:21

I heard you talk about kind of the space around you, the flowers, getting some music, kind of understanding you're wanting to create a space as you transition. Is there anything else about your space that you're planning?

SPEAKER_00 39:35

Yes, a nice comfortable chair for someone to sit in. And I've already laid in my bed over where I think the hospital bed will be and looked out to make sure I could still see the birds and you know, all of those things. And so I've checked it out and I've looked at the space. I'm happy with the space.

SPEAKER_05 40:04

So we've talked about a lot today from the physical to the emotional to the spiritual. Is there anything else that you would like to share or that you think our listeners should be thinking about as they're thinking about when they have to make these same decisions?

SPEAKER_00 40:25

I think the biggest thing that I I can leave is this isn't something to, you know, like this is who, and you don't want to talk about it and you want to just close it off. This is a natural part of life. It truly is. And when it comes down to it's you, you can look at that and say, yes, it's just a natural part of life. But when it's you yourself, it's very, very personal. So make sure you're comfortable with whatever you're thinking your personal is. Once you're comfortable, it'll be much easier to approach it, to approach it with other people and to be able to wake up in the morning and not be having bad dreams. Because in the beginning I was having bad dreams when I first was seriously contemplating ending treatment. But now I'm not having the bad dreams. I've realized this is just another part of life and it's just what happens.

SPEAKER_05 41:48

It sounds to me like you've reached a place of acceptance that this is what's happening and you're comfortable with how you planned for it to happen. We really appreciate you sharing that with us.

SPEAKER_00 42:02

Thank you very much. I hope this helps at least one person. That's all I ever look at is one person. And that's enough for me.

SPEAKER_02 42:14

I have a feeling this is gonna help a lot more than just one person, Dar. Thank you so much for being so open and honest with us and with our listeners. We appreciate it.

SPEAKER_00 42:26

Thank you for giving a platform for me to be able to do this too. I really appreciate it. I I wasn't when you first mentioned it, I'm like, oh wow, I wasn't thinking that, you know. And I'm I'm so glad I had an opportunity to do this and you guys made it happen. So thank you very much.

SPEAKER_02 42:52

As we prepared for this episode and talked with Star, one of the biggest takeaways is that happiness is a temporary emotion that will come and go depending on your circumstances. But joy is not a simple emotion, it's eternal and remains no matter what we're going through. We can all choose to have joy in our hearts, just like Dart.

SPEAKER_04 43:25

This episode was produced by me, Abigail Johnston, and my dear friend Melanie Sist. Thank you for listening.