Full Episode Transcript

Episode 1: We Did It Together as a Family (with Kim Young)

Transcription Edited by: Genneil Martin

Running time: 1:41:46

Kimberly Young: That year, 2015, December 26th, that's when the process started. We were already close, but I think it just made us even closer, if it can even get that much  more close. Because everyone that pretty much knows our family, our nucleus,  we are tighter than tight. So when that happened, it was like, okay, all hands on  deck. Everybody has to drop whatever they're doing because now we got to go into beast mode. 

[music]

Jodi-Ann Burey (as host): Welcome to season three of Black Cancer, a podcast about our lives told  through our cancer journeys. I'm your host, Jodi-Ann Burey. Our guest on today's episode is Kimberly Young, who led the team of her siblings and family members to support her mother's journey with multiple myeloma. What most moved me about Kim's story is the love and closeness of her family, which was  only amplified as they navigated a time of crisis. Kim works for one of the biggest health insurance companies in the United States, so she shares her perspective on navigating the health insurance process and finding organizations offering financial resources and social support that insurance can't fully cover. To honor her mother's legacy, Kim continues to work as a cancer advocate in faith-based organizations. 

Jodi-Ann Burey: This will be the first of two episodes this season focused on multiple myeloma.  Thank you so much to the Leukemia and Lymphoma Society for your sponsorship and support of this special series. Here's my conversation with Kimberly. 

[music fades] 

Kimberly Young: It's all good. 

Jodi-Ann Burey: How are you doing? 

Kimberly Young: I'm doing pretty good today. I am. 

Jodi-Ann Burey: Good. 

Kimberly Young: We got through everything with my mom's services and things, so doing pretty  good today. 

Jodi-Ann Burey: The service was when again?

Kimberly Young: The service was May 29th, and then we had to wait a whole nother week to bury her on June the 3rd, which was the day before her birthday, June 4th. And ironically, tomorrow will be a month since she passed, because she passed on May 14th. It's just crazy how fast everything went. But we're doing okay. I'm doing okay.

Jodi-Ann Burey: Oh my God. 

Kimberly Young: Yeah. 

Jodi-Ann Burey: I don't even know the emotional space that you're in right now. 

Kimberly Young: I think I'm just right now going through the emotions... surface-like, because I don't feel like I really had that real gut ugly cry. I had ugly cries, but the real ugly  cry where you just scream and on the floor and just everything. So I haven't gotten a chance to do that yet, but when it comes, it comes. But it comes in little waves where I have moments. For instance, this week I had a doctor's appointment, and we all share the same primary doctor. When I got to the office, I signed in and then I sat down, and then I'm like, oh my God. You were just here a couple weeks ago with your mom, you know, with mommy. And then I just started tearing up. And then when I got into the doctor's office, the waiting room and then you go into the actual room, my doctor, he came in and then he's like, "Hi, Kim." And I'm like, "Hi." He's tearing up. So it was just, it was a little emotional earlier last week. So, you know, just getting through it. 

Jodi-Ann Burey: Do you feel like it just crept up on you or were you anticipating that it would be  an emotional situation? 

Kimberly Young: No, it just crept up on me. I didn't think it would be because I just was doing my normal thing. I'm back to pretty much my routine now. I'm back at work, doing all the things with my kids, taking my son to basketball games. And my daughter, she's in culinary. So I'm like, okay, let's get ready for that. She just started a new job. So I'm like, okay, I'm back to normal. And then went to the doctor's office and pretty much had not a full breakdown, but a semi breakdown. I'm like, oh my God, you were just here with mommy. You were just here going through all of her appointments. And that mask just got full. I'm vaccinated, but I still had my mask on. And next thing I know, the top of my mask was just all wet. [laughter] And they're all looking at me 

Jodi-Ann Burey: And you're like, I can't breathe right now. 

Kimberly Young: Yeah, exactly. [laughter] And I'm like, okay, let me just try to find the bathroom really quick. And then as soon as I went to go find the bathroom, that's when the nurse came out. She was like, "Kim." I'm like, "Oh." And she's like, "Are you okay?" I'm like, "Yeah, I'll be okay." I'm like, "Just get me to a room, please. Just skip the preliminaries. I don't want to get on the scale right now. I don't want to do any of those things. Just get me in the room." 

Jodi-Ann Burey: Now, since my experience, I feel very authoritative in healthcare spaces. And so when they're like, "Oh, can we weigh you?" I'm like, "No. I don't want to go through that." The stuff that I'm dealing with has literally nothing to do with what I weigh right now. That is not the thing that we're going to do today.

Kimberly Young: Absolutely. 

Jodi-Ann Burey: And just setting those boundaries. On a different note, I think about... I don't  know. Did you hear about the Naomi Osaka story where she said that she wasn't going to do press for the French Open because of the mental illness and mental  stress of it? 

Kimberly Young: No, I didn't hear about it, probably because of everything that was going on.  Normally, I'm usually up on current events. 

Jodi-Ann Burey: I totally get that. But I bring it up because she's advocating for herself in this really high pressure situation and people are not giving her the space for that. And so instead of dealing with the back and forth of the fact that she wasn't going to do press, she just pulled out with the French Open completely. 

Kimberly Young: Wow. Awesome! Kudos to her. What a stand. 

Jodi-Ann Burey: Because they started threatening her, like we're going to pull you from tournaments or whatever. This woman's the highest paid athlete in the world. And granted, she's navigating whatever mental stress and illnesses that she's having to navigate. But it just felt so empowering to see a young woman of color just say, "Yeah, I'm not going to do that." And it's interesting because I feel like for myself and people I know who've gone through some type of trauma, your boundaries get real clear. 

Kimberly Young: Yes, they do. Yes, they do. And they get constricted. And it's like, okay, I don't  have room for that, or I'm just not going to accept that. I definitely know that's the space. I was in that space because that's just the personality that I have anyway. But now it's like, I don't have any time for any nonsense, and shenanigans. If it's outside of what I'm actually doing or that's important to me,  then bye. I'm sorry. I can't control how you feel about what you feel, but this is what it is. Take it or leave it. Accept it, don't accept it. Don't really care right now. 

Jodi-Ann Burey: No, and that's real. And that can come, I think, from that space of just really strong affirmations about these are the things I am and am not going to tolerate. And then I think there are moments in my experience, and I wonder for you as well since your mother had just passed so recently, is it's not even that I'm deciding what the boundaries are. There is literally no space. Even if I wanted to deal with your shenanigans, I have zero capacity. 

Kimberly Young: Absolutely. Absolutely. I know exactly what you mean. Have no capacity for it. No space. So yeah, they're just on the perimeter as far as I'm concerned [laughter].

Jodi-Ann Burey: Do you feel like people have been understanding of the space that you're in, or do you feel some tensions or pressures to return "to normal life" as you're navigating something that is not normal right now? You know?

Kimberly Young: Mm-hmm (affirmative). So I can say that comes twofold. So in one perspective, I think when it comes to family members, meaning those who might be aunts or uncles and things of that nature, sometimes I think they don't respect the space. It's funny that they don't, but your friends will. So I have friends who have been giving me so much space, as opposed to normally calling me, just sending me a text. Hey, just thinking about you. No response needed. That's the kind of stuff  that I like and that I can operate in right now. 

Kimberly Young: But then you have the family members that feel like they have to call, which is fine. But then they feel like you have to talk to them. So that's the part that's crazy. You would think that it would be the opposite, but no, it's the invasion of  some family members, I will say. And it's only a couple in particular who feel like they are part of something that they're really intrusive, in a sense, and just feel like they should have been part of the whole thing. And in some instances, they were. In-laws. Not even my mom's sister or brother [laughter]. 

Jodi-Ann Burey: They're not even blood [laughter]. 

Kimberly Young: Yeah, you're not my mom's blood. You're not part of that blood line, but you felt  that you needed to be part of it and felt like you needed answers, and was very intrusive. So that's the part that I found interesting. But I shut it down. So that's the stance that I took, I said, because my priority right now was my father. And because they had been together for so many years, over 55 years. This year would have been 55 years of marriage to one person. 

Jodi-Ann Burey: Oh my God. 

Kimberly Young: Exactly. 

Jodi-Ann Burey: If I could be with somebody for 55 minutes, I'd feel like that's an accomplishment, [laughter] much less 55 years. 

Kimberly Young: [laughter] Exactly. 55 years. 

Jodi-Ann Burey: Wow. What a love. 

Kimberly Young: Exactly. Exactly. And they were each other's heart, each other's love. So that was my priority, in making sure he was protected, in a sense, or encasing him in  a bubble. And that's what my sisters and my brother and the grands, we all decided that was the priority. We needed to protect him and keep him in a bubble. Number one, he's 80. They both were 80. So we just have to spare him, and sometimes in sparing him, that means, I'm sorry auntie or uncle, he can't take that call right now because it's just too much. It's emotionally too much right now. And then the physical part would have played a part. So to answer that question, yeah. It was just funny that some of the family members just thought that they needed to be part of it and intrusive, and I got the space from  my friends. 

Jodi-Ann Burey: Sometimes people need to grieve communally. I don't know these people. You know them, so you know all the issues. But if I were to give the most generous reading of it, it's like, they have their relationships with your mother that you don't know anything about. And they have this desire to be close to her journey  in some way. And maybe the sense that your friends, their accountability is to you. 

Kimberly Young: Right. Right. 

Jodi-Ann Burey: And so they have a different capacity, maybe, to give space in ways that the family members don't. Because I know that you were a main focal point in your mother's support system. What I found myself, as a person who was going through it, as the focal point, you're navigating all these ways that people want to be close to you need something from you while you're still also trying to protect yourself and the things that you need, as well as your designated priorities. My father is the most important thing right now. And maybe that will hurt your feelings, whatever. But like we talked about with the boundaries, [laughter] I have to be very clear. 

Kimberly Young: Exactly. Exactly. And my father is the type that doesn't want to say no. He just wants to tell and say everything to everybody, just so that someone's feelings doesn't get hurt. And me, the type of person that I am, I'm like, "Dad, that's not  something you need to worry about right now. Stop worrying about their feelings. We're focused on your feelings and how you feel and what's going on  with you. We have to make sure that you eat. We have to make sure that you sleep." We have to make sure that everything is functional, so to speak, especially with him just moving. He's in a new environment. 

Jodi-Ann Burey: That's a lot. 

Kimberly Young: So all of these different things, it was a lot. And it was so compacted all at one time. That type of person. He wants to accommodate everybody. And because he doesn't have boundaries, so to speak, for people, he doesn't know how to extend that to people and to help people to understand that, hey, just not right now. He doesn't have that capacity. He never really did. 

Jodi-Ann Burey: Because he's a minister, right? 

Kimberly Young: Yeah, he is. 

Jodi-Ann Burey: Ministers do not do that.

Kimberly Young: They don't. They don't. He'll be still up on a phone call. I'm like, "Dad, that's not important right now. You don't have to talk to them right now. They can leave a  text message or a voicemail and you can listen at a later time. You do not have to pick up the phone every time it rings." And he is. So exactly. It comes with the territory, because he's availed himself so many years. And I'm like, "Dad, now you're on the receiving end of this. Let this be reciprocated back to you. You've  been praying for people and going to visit people in the hospital. You've actually eulogized people and things of that nature. Dad, all of those years that you've been doing this, now is the time to be able to sit and receive it. So all those prayers that you put up, let's let you receive them now at this point." 

Jodi-Ann Burey: Okay. So my parents used this in a threatening manner to me when they would talk about you reap what you sow [laughter]. But in this case, it's like your father's been sowing the seeds of caring for his community and caring for other people and praying for other people. You get to reap that now. You got to, as you were saying, be on the receiving end. 

Kimberly Young: Exactly. It's biblical. You sow that good seed, that seed will come back and reap a harvest. So let that harvest come back to you, Dad. And that's what we've been saying to him. He was saying, "Oh, I feel like I can't pray for people right now." I'm like, "You're right. You can't pray for people right now." 

Jodi-Ann Burey: Exactly. There is no lie here [laughter]. 

Kimberly Young: Exactly [laughter]. "You should not be praying for people right now. Let people  pray for you because you do not have the capacity to even do it. You're emotionally just wiped out. Your heart is broken. So Dad, you really can not pray  for people. Exactly what you said. And I'm glad you're being honest about it, Dad, because that's what we want to hear." That's what I know. Okay, I can breathe a little bit because he's not saying some other things. He's not trying to pray through this. Because if he was trying to pray through it, then I'm going to  be a little bit worried. 

Jodi-Ann Burey: How do you support him? Is it conversations with him? Are you physically taking phones away from him? On the real, how do you support someone who lost someone that they loved for over a half a century? 

Kimberly Young: Absolutely. 

Jodi-Ann Burey: With a level of love that, even though you, as the daughter, are intimately connected to that, is that a level that you would not understand? 

Kimberly Young: I don't. And I'm glad you said it that way because I really do not understand it on that level, only because I have not been in that position. I've been married before, divorced, and now have a partner now. But however, that love, that's relationship goals. So what we did in the beginning, we did. He just got an iPhone. He didn't know how to use it, so we used that to our advantage and shut the volume off where he couldn't hear it [laughter]. So he was like, "Well, what's happening with the phone?" We were like, "Well, Dad, we're screening your calls." And then we just shut off the house phone. So we all took turns with  my sisters and my brother and even the grandkids. We were like, okay, we're going to just do this in rotation so that we can make sure that it's quietness for him. 

Kimberly Young: And then right in the beginning, I did shut everything down. I said, "Dad, you're not taking calls and you don't have a choice in it." Because I had to put my foot down. "You're just not going to have a choice in it. Someone is going to spend the night for a couple of days. And then from there on, we'll take it day by day." I would say that it started working out. And then while we were there, we were there physically most of the time, one of us or two of us were there most of the time. And we were just screening calls and we would ask him, "Is this a call that  you want to take?" And we gave him that option. When we noticed that he was  starting to take too many calls, then we backed it off. 

Kimberly Young: Now, even yesterday, we haven't all been bombarding him because we noticed that he was like, okay, I need some time. So we were like, okay, we're going to back off. So yesterday, there were some family members and they all went out to Applebee's, so I checked in on him at Applebee's [laughter]. I know. Overkill.  However 

Jodi-Ann Burey: You just roll up to the Applebee's? [laughter] 

Kimberly Young: I sure did. I was at the nail salon and I found out he was at the Applebee's. I said, well, let me just check in. I know these are family members that I can trust and love, but let me check in because that's the only dad I got. So let me just make sure it's not some extra folks, like it's just not a party of 15. That's going to be too much for him. So I just checked in, just perused the area, and I'm like, "Hey  everybody," kissed my dad and I'm like, "All right, have a good time. I'll talk to you tomorrow." 

Jodi-Ann Burey: I love that. Let me just check in on you. 

Kimberly Young: Just check in on Dad. 

Jodi-Ann Burey: I'd grab my own little stool and just sit next to him. 

Kimberly Young: Yeah, exactly [laughter]. 

Jodi-Ann Burey: What y'all talking about? 

Kimberly Young: Exactly [laughter]. So yeah, it's been okay. He's doing pretty good. No one's spending the night right now. He's like, "I need my time at night," and I can understand that. That, I can understand. Because if he needs to grieve the way he needs to, he might be inhibited if someone was there.

Jodi-Ann Burey: Yeah. No, that's real. [sigh] What a journey! 

Kimberly Young: Tell me about it. 

Jodi-Ann Burey: What a journey. I love in this, and then we're going to get into this later, of how close your family is. I don't think I would ever roll up on my family member at Applebee's. 

Kimberly Young: [laughter] Yeah. I'm that one. I'm gangster when it comes to my family. 

Jodi-Ann Burey: Yeah. It's like, we are in this. Still, I wonder if that level of closeness brought you in closer to your mom's journey when she was just navigating the symptoms and conditions of her cancer. So for me, I live in Seattle by myself. And when you're the person who's feeling the changes in your body, it can be very isolating. And it requires you to share that information with other people. And so I've been struggling with symptoms. My family had no idea what I was going through, going to doctor's offices and all that. I think my coworkers probably saw me or my friends would hear me complain about it, but I wasn't very intentional about making sure that my family knew what was happening until I knew what was happening. And so I wonder for you, because your family dynamic is so different and y'all are so close, how did you even know that your mom was starting to experience some of the symptoms and conditions of her cancer? How were you brought into that process with her journey? 

Kimberly Young: So like you said, we're very, very close. And I can recall back even now, we did a  big family trip to Florida maybe a year and a half, right before she got diagnosed. And it was just weird because we were ready to go to Florida. We were all at Target getting stuff. Bathing suits, last minute things. And my mom's complaining about not being able to walk. And we were like, "What's going on?" Like, "Mom." We were actually joking because she had to ride in the little scooter and we took a video, and it was just a hilarious thing. We were like, "Oh my God. We can't believe she's riding the scooter." Did a big video of it. We're just laughing about it. Then after a while, we were like, "Wow, she really can't walk. What's going on?" So we were like, "Okay, after the trip, we're going to figure out what's going on." And we did, but it seemed to have passed, so then  we let it go. 

And then maybe a year later, she really started to feel sick and really had these problems with her arm and her leg. And we were like, "Wait a minute." And it was now, this time, it was around Christmas. I'm like, "Okay, there's no way that you're going to keep continuing to feel this kind of pain to the point where you  can't even enjoy Christmas." Because that's one of the biggest times that we all come together, although we're usually together anyway, but we really do it up  with everything. She couldn't even make the stuffing. So when she couldn't make the stuffing, I'm like, hands down. I'm like, listen. [laughter] That corn bread stuffing, that's her thing. She couldn't make it. And that potato salad, and  she's asking for a help. Okay, there's a problem. Hello.

Jodi-Ann Burey: [laughter] My stuffing's on the line right now. We got to figure this out. 

Kimberly Young: Exactly. My cornbread stuffing, and people call it dressing, however you want to call it. That's major. So when she couldn't make it, I said, "Okay, she got to go to  the hospital." So my dad took her. And that year, 2015, December 26th, that's when the process started. We were already close, but I think it just made us even closer, if it can even get that much more close. Because everyone that pretty much knows our family, our nucleus, we are tight. And I don't even know  how much more I can express it, but we are tighter than tight. We do just about most things together. Although we have our individual families, we would still come together on a Sunday. If there needs to be cleaning at the house, it's a family matter that we all help clean mom and dad's house, or whatever the case  may be. 

Kimberly Young: So when that happened, it was like, okay, all hands on deck. Everybody has to drop whatever they're doing because now we got to go into beast mode. And at that time, my children were much smaller, so I needed coverage. So then that's when my sisters and my brother jumped in and allowed me to be able to take the lead in helping my mom and dad navigate this disease. And they stepped in  in other ways by supporting me and supporting each other. 

Jodi-Ann Burey: Even in you just saying coverage, my mind immediately went to time sheets and  dry erase boards. Now it becomes a project. 

Kimberly Young: [laughter] It was a project. 

Jodi-Ann Burey: It was like, yes, beast mode, all hands on deck. All right, let's put up the flip  charts. Let's go. 

Kimberly Young: Exactly! [laughter] That's exactly... It's funny you said that because I told you my sister's the project manager, so that's when... I'm a spreadsheet chick. I deal with numbers, so that's me. So I started dealing with the numbers and the healthcare system. And then my sister's like, "Okay, we got to figure out what medicine is for what." And there's the spreadsheet. She started the designing who's going to be on this day, who's going to cover Kim's kids, who's going to meet them at the bus stop. My dad had to come out of that equation. Before, if I needed coverage, my mom and dad were able to participate, step in here and  there. But now, because they're now no longer to be a part of that equation, everyone else had to step in. Brother who has no kids was like, "Okay, I'll pick them up. I'll sleep over, come straight from work, make sure they have dinner,"  that kind of thing. So it was a major process. It was some spreadsheets and calendars being moved across the family members. 

Jodi-Ann Burey: I think that's one of the scary sides of when you navigate a health crisis. You have the health part and then you have the life management part. You know when people to say, "Oh, Beyonce has the same 24 hours in a day as you." And I'm like, "Beyonce has a staff." [laughter]

Kimberly Young: Absolutely. Absolutely. When you can delegate and hand off, yeah. And then you don't have to worry about it or do what you have to do and just go about your business, yeah. But that's not how life works for regular folks. 

Jodi-Ann Burey: Exactly. Exactly. So all y'all become staff for each other. 

Kimberly Young: Exactly. It's crazy. It really is. Then you have to make the phone calls to the  school. Okay. And then that's the other part. I had to notify the school of what's going on, just in case this arises or there's another incident. Because I told you I have a special needs daughter, so that was tricky, trying to manage that and make sure that she has the proper coverage. Not just coverage, but the proper coverage. 

Jodi-Ann Burey: Exactly. Exactly. It becomes a big project on multiple fronts.

Kimberly Young: Absolutely. Absolutely. 

Jodi-Ann Burey: And so were you with her when she received the diagnosis? What was that process, where you know you're experiencing pain, you're trying to figure out what's going on, and then you find out what's going on? 

Kimberly Young: Mm-hmm (affirmative). Yeah. 

Kimberly Young: Yeah. So I wasn't with her. I was on the phone, so to speak while the doctors were talking to my father because my father just did not have that background  in healthcare, or even just understanding what they're talking about because doctors tend to just rattle off things as if the patient is a expert and what they're talking about or even their loved one is an expert. I was trying to help my father,  help them explain to him what was going on and that's one of my personal pet peeves, you're not going to talk over my head. You're going to take that information and break it down so simplistic that I'm able to understand. So when my father was telling me, he's like, "I don't know what they're saying there. They're just saying your mom's hematologists and oncologists." 

Kimberly Young: I'm like, "Stop for a second. Ask them what their specialty is. Let's start there because that's how you'll know what's actually happening because you might have a hematologist there or an oncologist. They operate in different capacities in some instances. So dad, find out who you're talking to, number one," because then the orthopedist had to be involved. So I said, "Just put me on speaker so we can talk to whomever" and that's when we found out and they said, "We suspect your mother has multiple myeloma." I had no idea what multiple myeloma was. I knew what myeloma meant, but not in that capacity. I had never heard of multiple myeloma. So I proceeded to ask them, "What is that in comparison to other cancers that we know about?" Because you just don't hear that. You hear about the breast cancer, prostate 

Jodi-Ann Burey: Colon cancer.

Kimberly Young: Colon cancer, all kinds of other things, brain cancer, leukemia. You hear about those prevalent ones, but multiple myeloma, I'm like, "Well, what is that? Multiple of what?" Does she have multiple growths somewhere that you just can't stop? Exactly. 

Jodi-Ann Burey: Singular growth or singular myeloma, is that a thing 

Kimberly Young: Is it all over? Is it going to keep multiplying? Is it you're not going to just be multiple, but go to polynomials? I don't know. 

Jodi-Ann Burey: Yeah, yeah, yeah. 

Kimberly Young: Poly, whatever. So I'm like, "Okay, let's figure out what this is" and in figuring it out, I'm like, "Okay, well you need to break that down. Even if I need a slideshow or a diagram, I need that from you. I need some definitions. I need some resources that I'll be able to look it up to go to. I'm glad I have Google, however, I need you to point me to your expertise without maybe the chemical definition of it or whatever the case may be." So just trying to navigate what it was, was in the beginning, kind of daunting because it just felt like, oh my God,  we just heard cancer and that's the only thing that resonated. As soon as you hear cancer, you think, okay that ends in death, immediate death, unfortunately because you see people or hear about people and it's like, okay, well is it stages? All those different things came to mind. 

Jodi-Ann Burey: Yeah because there's this the pop cultural cancer and then there's the actual cancer that you're dealing with and it requires some times to unlearn assumptions that you have about cancer so you can more clearly see what's actually in front of you. That could be really tough because there's so much fear involved in everything. So how was multiple myeloma explained to you and what do you think you know about multiple myeloma now that you didn't know or you wish you knew at the moment that your mother was diagnosed? 

Kimberly Young: Yeah. Multiple myeloma was explained to me and the doctor actually said it just like this, "If this is the cancer you you're going to get, this is the best cancer to get if there is a best cancer." 

Jodi-Ann Burey: He wouldn't say that 

Kimberly Young: Yeah, exactly. So I'm like, "Okay, I get what you're saying, that it's not as  [crosstalk 00:30:13] severe." Just say it's not as severe. Don't say it's the best cancer to get. So it may not be as severe, but it's still cancer and we know cancer means it eats away at some type of cell or it's fighting against something that is good and making it back. So that's my simplistic way of putting it. The more they explained it, they were saying that it's a type of blood cancer. Now I'm like, "Oh God, is it leukemia?" They're like, "But it's not leukemia." Okay so-  [laughter]

Jodi-Ann Burey: It's like I'm learning and un-learning in real time 

Kimberly Young: Exactly [laughter] I'm like, "Okay, that's good but what does it really mean?"  They went into detail and we had all this literature and things like that and we all read it and went deep into it, learning all these definitions and I think we probably went too deep because then you're almost sounding like a doctor when you're talking about it 

Jodi-Ann Burey: Oh yeah, but it's like that. 

Kimberly Young: So we kind of took a step 

Jodi-Ann Burey: The last course of a NB 

Kimberly Young: Yes, exactly! [laughter] So I'm like, "All right, multiple myeloma. She has this."  What I learned was that the treatments were a little bit different than I want to say what your other typical cancers might have to go through. So she did get radiation and she did get chemo treatments, however, most of hers came in the form of a pill. She didn't have to sit for the drips. Maybe a couple of times throughout this whole ordeal, she did maybe some of the chemo drips, but it wasn't to the point where her hair was falling out, her eyebrows went missing, her nails became thin and fell out. So she had cancer, but she didn't look like- if that's a way to say it, she didn't have the physical appearance of those who might have experienced some of the other side effects of the chemo treatments of the losing the hair, the ball head and things like that. 

Jodi-Ann Burey: That's interesting and that's also part of what gets popularized so now we have this image of what cancer looks like and that it's not bad for everyone. So that can be difficult too of like, "Oh my mom's navigating cancer. She doesn't look like it," but you still know what her actual experience is. Do you feel like she ever felt, "I'm a cancer patient or I'm sick?" How is she navigating that different  struggle of, "I'm going through this thing that people kind of know about, they have this image of it, but I'm not fitting into that image-" 

Kimberly Young: Yeah. That's a good point that you just brought up because I would say maybe the last two years, I think she started to feel like that and I think it was because  of the cancer with the different treatments, it stops working after a point in time with multiple myeloma. So you got to keep going from one treatment to the next treatment, to the next treatment and I think it was starting to wear on her and wear on her body because then I started hearing her say words like, "Yeah, I am sick." Before, in the beginning, she wasn't really using that term. She  was like, "I didn't feel well or I'm having a bad day," but now she's like, "No, I'm  feeling sick." It wasn't just sick from the side effects. I think she was really ill where it was throughout her body. 

Kimberly Young: I would say that, and just to get back to the other question you had about what did I know now that I didn't know before, I didn't know any of the symptoms and I think we could have probably maybe caught it earlier because with my mom now stating she feels sick within the last couple years, I think had we caught it maybe around that time that we were going on that Florida trip, we would have been able to know how to navigate it a little bit better because multiple myeloma isn't talked about hardly ever as far as people knowing about it, because it's really amongst the African-American community where it really hits the most, it hits the hardest. You don't know the symptoms because the symptoms are similar to maybe just other regular symptoms that you might have for maybe high blood pressure or something like that. 

Kimberly Young: So it doesn't fit the mold of maybe going and now you have a lump. So, you know to go look and get the lump tested or some of the other prostate, you know if something going on if now you can't urinate correctly and have other things operate correctly, you kind of know, "Okay, I need to see someone because something is definitely wrong." But with multiple myeloma, it's so undetectable in a sense, unless you really start paying attention to so many different things and it's really mostly detected through blood work. And then the doctor has to know what type of blood work the order

Jodi-Ann Burey: This is the thing [crosstalk 00:35:30] that people don't understand, right?

Kimberly Young: Yeah. 

Jodi-Ann Burey: I've seen these sheets. You have a sheet when you've been into blood work and there are all these little boxes. Now when they run your blood, they ain't checking for everything. 

Kimberly Young: No. 

Jodi-Ann Burey: They have to intentionally look for stuff. 

Kimberly Young: Absolutely. 

Jodi-Ann Burey: So I feel like when I talk to my doctor, I'm looking at the sheet like, "Okay, what else can we tick off here? Let's do the full workup-" 

Kimberly Young: Thank you. 

Jodi-Ann Burey: She's like, "I can't do that." So she's like, "Well, you do have low iron so let's do that." She's trying to figure out ways to get more tests with me 

Kimberly Young: Yeah, and it's unfortunate. 

Jodi-Ann Burey: I'm like, "What?" 

Kimberly Young: It is unfortunate and knowing the experience that I have in the health system it's because you can't order these unnecessary tests so to speak-

Jodi-Ann Burey: Quote unquote. 

Kimberly Young: Yeah, quote unquote. So the doctors have to get very creative in trying to stay within the system, work within the system so that they don't get flagged for whatever, using unnecessary tests and all these different things called waste and fraud and all the things. So they have to get creative. So like you said, they're looking for a little thing. "Okay, so your iron might be not mid way on the scale. If it gets a little bit lower, then we'll do this test or your vitamin D," all  these different things. So that's the crazy part. Some things to me, should be added to the routine tests for African-Americans. Don't just give us the same workup that you normally would get, because you're just looking for infections because that's a normal one. You want to test the red blood cells and the white  blood cells because that's an indicator if there's some type of infection going on.  But there's some other key indicators that I think should be on that blood test or  that blood panel test for African-Americans because that we're more susceptible to certain other types of diseases as our counterparts. 

Jodi-Ann Burey: Yeah, and the stress of racism is deteriorating our bodies but I digress

Kimberly Young: Absolutely. [laughter] 

Jodi-Ann Burey: Right? [laughter] 

Kimberly Young: Absolutely. 

Jodi-Ann Burey: It is true. There are studies on this, like the stress of racism creates worse health outcomes. So when people say, "Oh, black people, they're getting more aggressive cancers or getting them earlier, I wonder why that is." 

Kimberly Young: I wonder why. 

Jodi-Ann Burey: [in Spanish] Racismo! 

Kimberly Young: You know? [Laughter] I'm under stress, I'm always on the lookout. My level of comfort might should be at a two, but because I'm not sure what's going to happen today, I'm at a seven. So, I'm operating out of a seven all the time because I'm like, okay, I don't know what's going to happen here. I don't know what's happening here or I got to have my guard up when I walk into the store. That level of just constant cortisol, and I'm probably going left a little bit, but I just think of myself, that fight or flight hormone that's always prevalent for me. Let me speak for Kim. I'm just always like, okay, [sigh] when can I really let my cortisol just drop and just be at a normal... The only time that's really happening is if I'm at home. But other than that, as soon as I step out that door, whoop, I'm operating at a seven. 

Jodi-Ann Burey: As you talk about trying to pay attention to conditions and symptoms and try to sound the alarm when things just aren't right, if you're constantly in this fight or flight, or if you're in this heightened state, it can be hard to pay attention to things that are going on with you. 

Kimberly Young: Absolutely. 

Jodi-Ann Burey: So, I was having symptoms for three years and when you look back on it, one  plus one start equaling two and you start seeing... And as I was telling my doctors about it very casually, I feel like I'm having incontinence. She's like, "Oh, maybe you're just working and you're not paying attention to when you have to use bathroom." I was like, "No, I feel like I'm too young to be having these pee emergencies-" [laughter] 

Kimberly Young: Absolutely, exactly. 

Jodi-Ann Burey: It gets a little brushed off. And then I'm like, "Oh, I'm having some pain here, whatever." Fast forward, the incontinence, the pain, all that was because there was a tumor compressing my spinal cord, which was impacting all these functions. So I think sometimes in hindsight, the symptoms make sense, but some I go back and they look at, well, I did know that there was something not  right about this and then you just - 

Kimberly Young: Yeah, if it's not persistent or if it's not impeding on something that you have to do or keeping you from doing something, you do brush it off and I think that's just us as a people because we were groomed to "Keep it moving. You got to keep moving forward. You got to make sure this gets done. You can't fall behind" or whatever, just in our culture, so to speak, that's just how we're groomed. So unfortunately, we don't pay attention to some of those subtle things that you might want to keep a diary of, so to speak. This has been happening for a week, that's not normal because we also have that internal instinct that does not just tell us, "Hey, something's not right" and we just have  to listen to that, that inner voice, that inner nudge that tells us that but too often, we just ignore it. 

Jodi-Ann Burey: Yeah, that's so real. Do you think your mom was going through that, besides the Target stuff and the trip, where you kind of noticing things over time and brushing it off? As the outsider to that because you don't know what she's feeling. So unless she tells you, or it physically manifests with the dinner were you like, "Something's happening-" 

Kimberly Young: Yeah, I think it had been going on, but then also remember we're people of faith. So if something were happening, we prayed on it. [laughter] If she was really having a really bad day or felt sick, then that means we're going to the throne of grace. We are going to pray about this and the Lord is going to heal whatever it is and that's going to be the end of it. 

Kimberly Young: So I think a lot of that had to do with it, just keeping it all the way 100 because that's the type of the way that we were raised and my mom was a woman of faith and my father is a man of faith wholeheartedly. They believe in it. They're  not to the extreme where they won't go to the doctors because God's going to heal you of everything. They have common sense, but by the same token, if something were really going bad and it was out of the ordinary because it's out of the ordinary and it may not have been something that she had been experiencing ongoing, then that prayer is going up, "Hey Lord, you're Jehovah Rapha. You're going to heal me of this blah, blah, blah, blah, blah. Your word says, blah, blah, blah, blah, blah." 

Kimberly Young: So if that was the case, that's most likely what happened in the beginning until that stuffing did not get made, [laughter] that stuffing had to be pushed off to one of us, one of the girls, mainly me. 

Jodi-Ann Burey: Yep. You're like, "Wait, I got to make a stuffing. No, we're going to the  emergency room today." [laughter] 

Kimberly Young: Yeah, exactly. Now my niece used to make the potato salad. Okay. Something's  going down. Something's wrong. 

Jodi-Ann Burey: Yeah. When we think about faith, I come from a family of believers. I have strayed from that, but I'm not going to talk about that one podcast. [laughter] 

Kimberly Young: Got it, understood. Understood. Understood. 

Jodi-Ann Burey: But there's a space where your faith can actually help the process, so as you talk  about... I think I might start doing this, I never even thought about this. You have food diaries, but think about pain and health diary diary, like, hey, I'm noticing something today and just kind of jotting it dow, at the same time, when you're praying on something, you're actually spending an extended period of time thinking about it, talking about it, bringing other people into the fold in praying for like, oh, I have a pain in my side. That can actually bring more attention to what's happening to you. Right? On the flip side, it could be a hindrance in that you prayed and you're good and that was the end of the journey. So having faith, how can you use that in concert with really trying to help your situation? 

Kimberly Young: Yeah. It's a fine line, I use my faith in tandem with the common sense that I do have and the knowledge that I do have in medicine, because there is a plus in that. There might be some things that we might all have difference of opinions  in, but more often than not, there usually is some type of remedy or some type  of fix for whatever it is. We're not going to put cancer at that but other things like if you have a headache, maybe you need to take some Excedrin or if you have migraines. 

Kimberly Young: There's other things but I use my faith in tandem and I use my faith when there is an impossibility. That's where I feel like my faith and I'm using this gingerly in saying this loosely that it kicks in because my faith is always there. But however, my faith can kick in right at that point where I know there's something impossible so that I need the God the I serve to step in or not that he hasn't been, but I need that supernatural 

Jodi-Ann Burey: There's an emergency like, "Whatever you're working on right now, God, I need  you right now." [laughter] 

Kimberly Young: [laughter] Exactly, yeah because I know he's there, but however, this medicine isn't working, God. So either can you work through the medicine or do something supernatural to help this along? 

Jodi-Ann Burey: Yeah, it means a lot to me to even just listen to you and have these words wash over me because it's so consistent with all the prayers that people had for me and constant prayer. One, I think it puts me in a state of calm, but it also gives that faith, that listen, miracles can happen, things can... We actually really do not know what's going to happen next. So where do you put that if not in God?  Where do you put that? I remember navigating my own journey, I would just break down crying sometimes because it was just like I wish I had that for me in  my own journey. I see my sisters, I see my cousins, my contemporaries that literally are falling on their knees, praying for me, putting all of their faith and trust in God. Thank you so much for doing that for me because I am not personally, even all the way there. So I felt kind of lost sometimes and then relied on my faith and my family's faith to really push me through. 

Kimberly Young: Yeah, you have to do that. They are standing in proxy for you, but sometimes you're not there. What you just said is real, you're not all the way there. So because you're not, God allows other people to kind of stand in proxy for you to help you get through it or take that burden on for you and I find that that does help exactly what you just said because my mom at times was too weak to do anything. We would call her like the prayer warrior and she really was it. It felt like if we needed to get a prayer through, we going to call mommy [laughter] because mommy has the right word, she know how to speak to Satan, she got to speak to the devil and any other demon that thinks they're going to come and  invade. It was like she had the perfect words and the perfect... I'm beyond [crosstalk 00:21:21] so to speak. 

Kimberly Young: "Guess what you can't stay here because if you try to stay here," whatever it was, illness, demon, whoever, you can't stay here because Carolyn spoke those  words and she meant that she quoted from the word of God and that was it. So I understand what you're saying- [laughter] 

Jodi-Ann Burey: I love that. 

Kimberly Young: When you get those folks that can stand in proxy for you and kind of invade and  bombard heaven for you, then, hey, by all means, thank you because we're not always there. If we're all honest, none of us are there 100% of the time and I would probably venture to say 75% of the time, especially when you have those types of traumas and things that come in your life, it does make you question your faith big time, because I'm telling you now, just even presently, I'm like, you hit me with this one Lord. My mom wasn't even sick like that. Why did she have to go? 

Kimberly Young: I can see if she was onto death and we were looking for her to expire soon or within the next couple of months, that was not the case. This came out of nowhere and she just moved and we're all looking forward to that and then this came in. She moved April 30th and then she goes into hospital May 5th and then she does not return home. Okay, that knocked us all off of our rockers. I'm  still struggling. I'm like, all right, Lord, I know who you are, but all right. 

Jodi-Ann Burey: Let's go. 

Kimberly Young: Listen... 

Jodi-Ann Burey: How did you and your family navigate those immediate moments after your  hearing? Because like you said, you're learning about what multiple myeloma is.  You're trying to help translate and be in proxy with your father, who's helping your mom and then the work happens. 

Kimberly Young: Yeah, we all have to take on our roles. So I think I talked to you about our family  dynamic, anyway. We grew up in a household where we all had our designated  roles. We all had our chores that we had to do. So I think that, what I call team  building back in the day, when we were all growing up and that collaborative efforts that my mom and dad instilled in us and learning how to work together  and learning each personalities, I think that helped us as an adult when we were  navigating this issue. So we all took on our different roles. I've been coined or labeled the chief or the... [laughter] I forget what they called me. Something armor, I don't know what it was, but they're like, all right, she's in charge. We all  know what Kim's going to do so she's going to lead us out. 

Kimberly Young: And then you have my sister or the project manager who keeps us all together.  She makes sure that nothing is left undone or there's fragmented edges. Nothing is going to be out of order. So she just keeps everything in order. My brother is the one who kind of helps keep my dad in line because I'm the one that's the straightforward one. I don't sugar coat pretty much anything. So I just  give it to you like that. So he kind of, "All right, dad, this is what Kim is trying to say. Let's just try to work it together." My other sister is the navigator and the interpreter. So I might say one thing, she'll take exactly what I said, [laughter] make it more palatable for people to be able to digest and she's like, "Okay dad.  So what Kim was saying is that mom is blah, blah, blah, blah, blah" and this is what it really means. And he's like, "Oh okay," 

Kimberly Young: Me I'm like, okay, the doctor said this, this and this. This is what she has to do and there's nothing else to do with that, so we got to make a decision where my  sister would say, "Okay." In making those decisions then, this is what we have, we have option A, B, C. This is what it means when we choose A. So I'm just like  A is the answer. I don't care about B, C, D E, or F. A is the answer and that's it.

Jodi-Ann Burey: Is the answer. So, you're like, "Here are your options, but A is the answer?" 

Kimberly Young: Yeah, exactly [laughter]. Because I'm like, I already know this family. I already  know how you guys operate and I don't feel like going through all of everything  else when I know that we're going to end up at A anyway. But my one sister, the  baby girl, she'll take that and then explain all of that and then my sister who's the project manager will take all of those things, map it out, put it in a spreadsheet so that everybody can see it visually so that we know that we came to A. And my brother's like, "Okay, we're going to enforce it." So yeah, we just have  our roles. And I think that stemmed from us growing up and working together when we were young. 

Jodi-Ann Burey: Yeah. 

Kimberly Young: Yeah. 

Jodi-Ann Burey: I mean you must be so proud of that. 

Kimberly Young: I get they both are. I would say that because my mom would constantly... And this was funny to me that she would say this to me. Every time her and I would go to her appointments, she would always say thank you. We grew up saying thank you for everything, even to each other. But she was always so grateful. And I'm like, "Mom, you do not have to thank me." And I would tell her this all the time, I'm like, "Mom, this is my pleasure. You're my mom. I don't have a problem dropping whatever I'm doing to assist or accommodate you or do whatever it is. Mom, you've been there. You bore me. So, why would I say no? It was really a pleasure." And I don't even know if this sounds like fake or corny, but it was a pleasure taking care of my mom. 

Kimberly Young: It's a pleasure taking care of my father because of all they put in into me. The  time, the effort, the love, the patience, the kindness, the mercy, the ups, the downs. I'm 46 years old. Why would I not want to do for you? So it was my pleasure to be there, to navigate, to help her out. And she still would say thank you. And I say, "Mom, you really don't have to." And I know they were proud of  us. And I know my dad is definitely proud. Because he actually told us this the other day, when we had our family prayer on Mondays, like we normally do. At 9:00- 8:30 or 9:00, we still come together on the Monday to pray. And he was like, "I can see your mom in each and every one of you, although each have your  individual personalities. I can see your mom in each and every one of you. I can  see everything that your mom poured into each and every one of you." 

Kimberly Young: And I know he's proud, and it's making me choke up a little bit now. Because I just know that we're doing and living, and we've embodied what they've instilled in us. So we're only doing what they taught us. We really are a product  of our mom and dad. And they said the apple don't fall far from the tree, so this  apple didn't fall. I know that's a phrase. But to me, the apple didn't fall, it never  made it to the ground. Because they just helped us along and just reared us and  did the best that they can. And I think they did a great job because we're all working together now to make sure that things seem seamless to my father in the sense as much as possible. And we're just making sure that he's covered. My mom is in heaven just looking at us. I know she's smiling and watching everything we're doing. But yeah, I definitely know they're proud because we're just doing what they taught us to do. 

Jodi-Ann Burey: I'm just beaming. 

Kimberly Young: Yeah. 

Jodi-Ann Burey: I'm actually speechless. I have no words. What a manifestation of love.

Kimberly Young: That's a good way to put it. Yeah. 

Jodi-Ann Burey: That's love. 

Kimberly Young: Mm-hmm (affirmative), it is. Yeah. The same love that they have for each  other, they instilled that in us. We saw them, even now I know they loved each other. Without a shadow of a doubt, I know they did. I mean, to the point that even if they had a disagreement about whatever it was with us while we were little. We didn't know about it because they didn't disagree in front of us. They took it outside. Whatever it was, we found out later. They would go upstairs in their bedroom or whatever, discuss it. But they never did it in front of us. As opposed to maybe sometimes when I do bad, and I'm fussing... whoever was around, or their father at the time or my partner where I might be in disagreement, I'm like, "Well, you shouldn't have said that." That part, I probably should have honed in more on [laughter]. 

Jodi-Ann Burey: Yeah, I saw a lot of that. 

Kimberly Young: Yeah. And it's funny because I did the opposite in the sense. I never knew  growing up that... I used to be mad about them, I'm like, "Why they always..." even if I did try to pit one against each other. I'm like, "They're always on the same page. Why he always agreeing with her?"

Jodi-Ann Burey: United front, you cannot divide us [laughter]. 

Kimberly Young: Yeah. If there's one thing I can take away from my two parents, they were never divided in front of us. And they always instilled in us that whatever you do remember it has consequences. Consequences come in good and bad form. So remember whatever you do does not just only affect you, it affects everyone that's connected to you. 

Jodi-Ann Burey: Yeah. 

Kimberly Young: So. 

Jodi-Ann Burey: Yeah. 

Kimberly Young: Yeah. 

Jodi-Ann Burey: As you and your siblings are all working together and you all have your designated roles. How did you all manage potential disagreements or conflict or our differences of opinions of how to move forward with each other? 

Kimberly Young: Yeah. That's funny because we know each other so well, [laughter] and because they call me... that's what they call me the Sergeant in Arms. 

Jodi-Ann Burey: Oh, okay [laughter] 

Kimberly Young: Because I'm the Sergeant in Arms. They're like, "Okay, we're going to let Kim give her opinion first and state what she has to state. Because most likely she doesn't usually move off of it unless you give a very good..." you got to give me supportive information for me to move off of whatever it is that am on [crosstalk 00:57:57]- 

Jodi-Ann Burey: Yeah, I need resources. 

Kimberly Young: Yeah, I do. I need some backup. You can't just tell me anything. I'm not going to act like we didn't have disagreements. It's not to the point where we're falling out and not speaking to each other, or anything like that. Because that never really happened ever in life with us. But with our disagreement again, I have the one sister who gives us why this might work. "Okay, all right. Are all of us, let's take a step back. Let's look at this in a different way. All right, Kim we heard what you had to say. And we know you're not moving off of it. However, this is  what we're trying to do." 

Kimberly Young: And then my other sister's like, "Okay, well let me put it in writing. Let's look at  it. So we all know what we're actually doing." I mean, because we've really had to do this with my mom's service. Because my mom was so well known. And then we come from large families on my mom's side and my father's side, that we had to condense it. And it turned into a virtual funeral, part virtual and part in person. The only folks that were there in person were my mom's side of the family, her immediate, like her sister and her brothers and their kids. That's it. 

Jodi-Ann Burey: I mean it's still a pandemic, so. 

Kimberly Young: Yeah. Exactly! That's what I had to keep reminding people like, "Okay, it's still  COVID, hello." But I said that to say, because we had to come to an agreement.  Because I'm like, "Okay, well this aunt can't come." And it was like, "Well, you  know she's going to want to come." "Oh, well, this aunt can't come. I've got to dial in. Okay. I don't care if aunt is 79. Aunt better learn how to use Zoom." 

Jodi-Ann Burey: Somebody's got to get her on zoom. Get auntie on Zoom [laughter]. 

Kimberly Young: Somebody's got to get her on Zoom. Use her kids, we got cousins so-and-so who  can get her on the Zoom. That kind of thing. So when we have those kinds of disagreements, or those types of challenges, or conflicts or something like that.  We just all tap into, first of all, we know we love each other. So that's always first and foremost. And we always want to assume positive intent. Okay. So whatever that one is saying, we're not going to look at it as a negative way. We  know we all love each other. So whatever we're saying, we're going to say it out of love and we're going to work together. 

Kimberly Young: So that's pretty much how we get through certain things. Because I'm more of the hot head amongst all of us. Where I can get excitable very easily. And I like  to use that word excitable. Because I can go to zero to 100 really quick. Because  I know that about myself and because my sisters and my brother know that. They try to navigate around that. And they use that in a positive way. So if we know we need quick decision-making, we're going to call Kim. 

Jodi-Ann Burey: Yes, we have to leverage our strengths. 

Kimberly Young: Exactly! That's a good way to put it. Thank you. I was looking for that. We just use our strength interchangeably. And again, and I hate keep saying it, but it all  goes back to my parents. They just helped us learn that about each other. This was just challenging. 

Jodi-Ann Burey: I got it. 

Kimberly Young: I mean, this experience... yeah. That's all I can say is this experience. Because that's how deep and just in a whirlwind that I'm still in, I'm still in the fog, in the sense. 

Jodi-Ann Burey: And there's so many different layers to it. Right? It's about the diagnosis path.  It's about know her treatment path. And with her passing, what happens after that too? 

Kimberly Young: Right.

Jodi-Ann Burey: And so we go back to who making decisions about treatment. And as she was  exhausting some of those treatment options, what was that journey like? 

Kimberly Young: We did it together as a family. I do recall this last go around because I'm the  main one that hear's all the information. So I go get the information, dissect it,  break it dow. Hand it off to my sister who will type it up, send an email to everyone. I give the explanation, so they know exactly the pertinent facts. So it's  not going to be a lot of information, it's going to be where it will help us make a decision. So for instance, this last go around my mom had about four options of  new treatments. Two of them, I believe were in trial. The other ones were standard treatments. And I did A, B, C, and D. So C and D were trials. A and B were the standard. Okay, for standard what's the side effects? These are the most pertinent side effects. 

Kimberly Young: So that's how I grafted and my sister composed it. And then we sent it out as an  email. We set a date for us to come together and meet, do a Zoom call, do a Duo, whatever it was. And then we talked about it. Most of all, after talking about it, we prayed about it. But then the ultimate decision had to be my mom and dad. We gave our opinions, which ones we thought would be best. But then the decision making, we did leave to my mom and dad. Because ultimately it had to be my mom. And because my mom and dad operate as one. Whatever she said, my dad went along. Even though he might not have wanted it to be whatever it was. It was ultimately her. But we help guide that decision, I would say. Yeah. 

Jodi-Ann Burey: Yeah. Did she go through any of the trials? 

Kimberly Young: She did go through this last trial. She only went through one trial. The other  trials in the beginning were very intrusive for her. I would say in her opinion. The rest of us did not think so. Because we were looking at it from the point of view that it would have prolonged my mom's life. But she didn't like, I guess the  side effects and also what the treatment entailed. Because it was like some treatments were to the point where she would have to stay in the hospital for a  month. Because they would have to bring her immune system all the way down  to feed her back her own cells. 

Kimberly Young: And not to get clinical or technical. But it was like taking out her good cells and  replacing them back into her body. That was something that she was not willing  to do. Because the risk was great for her, as far as contracting some type of infection that could potentially wipe her out. But she was much younger than, she wasn't even 80. I'm not even sure if she was 75. So we thought she was, because she was healthy. My mom didn't really have a lot of long lasting, or I should say systemic issues with her health. 

Jodi-Ann Burey: Yeah. But I think like, even as we go technical, it's important because there are people who might be listening to this who are trying to debate-

Kimberly Young: Right. 

Jodi-Ann Burey: ...different trials or don't really understand that process. But I think what's even more powerful about what you're saying is that, you can have a really strong support system. But not forgetting that there's a person at the center of this. Who is a thinking person, who has opinions 

Kimberly Young: Absolutely! 

Jodi-Ann Burey: ...who has sound mind to make decisions about her own life, and what those boundaries... I always talking about boundary settings. 

Kimberly Young: Right. 

Jodi-Ann Burey: Right? Like we will guide, she'll make the decisions. And she gets to determine the quality of her life and the choices

Kimberly Young: Absolutely! 

Jodi-Ann Burey: ... that she wants to make. And so I really appreciate you going into some of  those details. Yeah. 

Kimberly Young: Yeah. We just would like, "Mom, we want what's best for you, but ultimately you're the one suffering with this. We don't know what this feels like internally."  And my mom wasn't a complainer. So I really believe there might've been other things going on that she just didn't want to just say to us. Because to her that was complaining. And my mom was so independent, like very independent. So astute, that with this disease, for her, that was just not working. To the point where she didn't drive anymore. My mom drove us everywhere. My dad drove was everywhere up until 2015, literally, the end of 2015. That's when my mom stopped driving. Up until that point, my mom had been driving everywhere. To the point when I had to have my kids or when I had my operation a couple of years before. My mom came over and took care of me, and me and the kids. And she's well over 70 something years old [laughter]. So yeah, she was very active. Yeah. 

Jodi-Ann Burey: In what ways do you think that your experience in the healthcare system helped you find the resources that you needed to support your mom? 

Kimberly Young: I will say that attributed and contributed a lot, to our success in being able to  navigate all of the intricacies of the health system. You have the insurance piece of it, the financial piece, and then you have the physical health piece. So to me, they don't always marry up. Because although you might need these different things because you're so sick. If you do not have the finances to get it done or be able to afford it, that might hinder what the next steps are. Okay? So health insurance says you have a copay of X amount of dollars. Because in the beginning you chose this health plan because you didn't think you were going to be sick. So of course you don't have the high deductible, because you're not anticipating to be sick. So now here's this health crisis that comes in. And now before you can even get treatment, you got to pay your copay and the coinsurance. 

Kimberly Young: And depending upon what type of insurance you have, that could be upwards of thousands of dollars. The deductible could be $2,600, just to get this one test. Because you have to pay it before you even get the test done. So now you're now taking out of a loan? Just so you can get this test done? So that's why I said that they don't marry up. So me having that experience in the health system helped navigate this. Because I was able to help my parents understand what they could do, at what point they could do it. If that makes sense. So in the beginning, when my mom got diagnosed, she didn't have the insurance that I later had her get the insurance. The insurance that she had was not the greatest  insurance. Because like I said, she never really had any health conditions. 

Kimberly Young: So she didn't feel like she needed the ramp it up. And have all these different things in place or have this high deductible insurance. So that if she did need to pay her deductible, it would be minimal. Plus they're older. So they're receiving  Medicare although, but they're getting Medicare advantage, not just straight Medicare. So they're paying into their insurance. Having that knowledge definitely helped. And I know that in the African-American Community, it's hard  for our community to navigate that. Let alone maybe even understand what some terminology is. Like I just said, I just said copay, deductible, co-insurance.  A lot of times in our community, folks don't even know what that means. So they don't even know what it is that they're getting into. And next thing they know they're in something. And now they have this high astronomical bill that, causes them to go into this debt that they can't get themselves out of. 

Jodi-Ann Burey: It's tough. Right? 

Kimberly Young: Yeah. 

Jodi-Ann Burey: Even me, I have a masters in public health. That don't mean that I know diddly squat about health insusarnce. 

Kimberly Young: Yeah, mm-hmm (affirmative). I know what you mean. Mm-hmm (affirmative). 

Jodi-Ann Burey: You know what I'm saying? And because your insurance is tied to your  employer... I've sat in these meetings where they compare the different plans and you have a hour to figure out what you're going to enroll in. 

Kimberly Young: [laughter] How about that? 

Jodi-Ann Burey: [Crosstalk 01:09:43] it's Like, I don't have stuff to do. Until you start making decisions based on your current state-

Kimberly Young: Mm-hmm (affirmative). 

Jodi-Ann Burey: ... and not futuristic and I'm like, so [crosstalk 01:09:53]-

Kimberly Young: Thinking ahead. Exactly! That's exactly what I'm talking about. 

Jodi-Ann Burey: Yeah. So I've been in situations where like, when I was on my diagnosis path, I was not on the good insurance. Like I was like, "Why am I paying $500 for an MRI?" 

Kimberly Young: That's what I mean. 

Jodi-Ann Burey: Right? [laughter] 

Kimberly Young: That's exactly! 

Jodi-Ann Burey: And so even me, I was just like, "Okay, let me invest. Right? Like I got extra dollars, let me get the better insurance plan." And luckily that was the year when I had all the real health bills. But it's tough, so I think there are particularly communities that maybe you don't have access to the same information. 

Kimberly Young: Mm-hmm (affirmative). 

Jodi-Ann Burey: Don't have the access to the time that it takes to invest in that information.

Kimberly Young: Right. 

Jodi-Ann Burey: You're talking about having big families and navigating things and, who knows what your life circumstances, to really sit here and start Googling terms? 

Kimberly Young: Exactly! 

Jodi-Ann Burey: Right? And so it's so tough that even people who are highly educated might not have medical literacy. 

Kimberly Young: Right. 

Jodi-Ann Burey: You could have literacy in all types spaces, but not necessarily that. So I feel like, not everybody wants a doctor in their family. No, I want somebody who knows  the health care insurance system in my- [laughter]. 

Kimberly Young: It's funny you said that, because my family members they always say that. They're calling me for everything, because they know that I worked for one of the largest health insurance companies in the world. So they feel like I know everything about it. I mean, granted I do know a lot about it, but not everything.  And it's funny because that's where the rubber hits the road. Because it's not so much, you can get around navigating medical terminology in medical literacy. Because you can Google it and like you said, you almost going to become your own web MD. 

Jodi-Ann Burey: Yeah. 

Kimberly Young: But that insurance piece of it. And then the financial piece, that's a whole  different animal. And it has so many moving parts. That it's hard to understand  it, and be able to then navigate it after you understand it a little bit. And that's not even having a full understanding from beginning to end. But I put my insurance hat, I'm like, "Okay, all right, I know you have this insurance. Let me start looking at, let me read up as to what it is you actually have. What's covered. What's not covered. Are you now at the 80%, 20% or are you at the 100% where they'll cover it fully?" And unfortunately at the time, she was pretty  much paying just about everything, because she had to meet that deductible. If  you don't have money saved up, guess what? You can be in a world of trouble, real quick. 

Jodi-Ann Burey: That's the devastating part. 

Kimberly Young: And it's, that is the devastating part. Because you're trying to navigate and try to  get healthy. But you almost can't get healthy because you're sick of what's you  know going to happen after you try to get healthy. You want to get all the treatments and everything, but then you come home to almost like a half a million dollar bill. 

Jodi-Ann Burey: Yeah. It's tough. It's just so devastating to me to know that there could be options that could keep you alive, keep you healthy. And this is like, you have to  budget for it or trying to 

Kimberly Young: You do. 

Jodi-Ann Burey: ... figure out is my life worth the financial ruin I could be in if I take this path?

Kimberly Young: Absolutely! 

Jodi-Ann Burey: And that- [sigh] 

Kimberly Young: Oh, I know that's the difficult part. It's almost like comparison shopping now.

Jodi-Ann Burey: Yeah. 

Kimberly Young: You can compare an MRI at five different places, just so you can get the better rate. It's almost like, car insurance. 

Jodi-Ann Burey: Yes. And that 

Kimberly Young: When they do this.

Jodi-Ann Burey: And when I'm sick or if I'm helping someone that's sick. I don't have time to do  that. 

Kimberly Young: You don't have time, thank you. Exactly! But that's where our system, which is  probably a whole nother podcast about our health system. 

Jodi-Ann Burey: That is [laughter] - 

Kimberly Young: And how it works for those of us. And those of us that doesn't work for. The  disparity, but. 

Jodi-Ann Burey: Exactly! The people who it doesn't work for. 

Kimberly Young: Thank you. 

Jodi-Ann Burey: I have one save card that [laughter]. So, I'm trying to navigate all this stuff for me, my sister calls. And I don't know if I shared this on another episode. But I want to tell you about it. My sister calls and she's like, I want to ask you something really tough." And I'm like, "Okay, what?" She goes, "If you end up completely paralyzed. Because that was a list of options that could have happened at the end of my surgery. 

Kimberly Young: Right. 

Jodi-Ann Burey: And then she's like, "I talked about it with the family. I'll adopt you as my child."  Right? Like adopt you. So because her family's in military. So that all my finances 

Kimberly Young: There you go. 

Jodi-Ann Burey: ... will be paid for. 

Kimberly Young: There you go [laughter]. 

Jodi-Ann Burey: So I said to her, I was like, "First of all, I love my sister dearly."

Kimberly Young: Right. 

Jodi-Ann Burey: I don't want to live with her for the rest of my life. 

Kimberly Young: Right. 

Jodi-Ann Burey: So I told, I was like, "If I wouldn't be completely paralyzed it's fine. I don't care.  I'll live in your house with your five kids. Like, that's cool" [laughter]. 

Kimberly Young: Right.

Jodi-Ann Burey: But it's so ridiculous. Literally my family behind my back had been plotting, this  could be financially devastating for us. 

Kimberly Young: Absolutely! 

Jodi-Ann Burey: So what are our options? And it's like, "Oh, she's in military. Let her adopt her."

Kimberly Young: That's what [crosstalk 01:15:16]- 

Jodi-Ann Burey: And I don't know if that's possible. But like 

Kimberly Young: Yeah. You have to exploit. But that's 

Jodi-Ann Burey: That's the scheming that you have to do. 

Kimberly Young: That's what you have to do. And that's what I mean. That's why as a family, we came together. We not only looked at my mom's diagnosis prognosis, but we also had to look at it financially. That meant now I had to put my other hat, not just health insurance. But I also have experience in the life and annuity part of it. So now I'm like, "Okay, all right, how much life insurance? We got beef this up.  This ain't enough." 

Jodi-Ann Burey: Wow! 

Kimberly Young: Now I got to look at it long-term, "Okay. Is this enough to cover, what  realistically, how much do funerals cost now? Okay. Are we going to do burials? Are we going to do cremation?" Now we had to have what I call, something I say to my family. I say, "We need to have courageous conversations now." Okay, so these courageous conversations

Jodi-Ann Burey: Real courage. Yeah. 

Kimberly Young: ... need to happen. And we need to put some things in place." And this is not the time that we can be, where we're all like, "Okay, we're going to avoid it." No, we got to hit it head on. Because number one, the age of our parents, and number two, the type of disease that she has. We already know what the end result will be. So since we know that, we need to work towards that. We didn't know it was going to happen as soon. However, we were financially prepared to handle it. Which was good, because as soon as we found out. That's when I started ramping up and I'm like, "Okay, mom, I already know both of you have life insurance. But we need to now look at how much, and what type of life insurance that you had. Whole life? I mean, term, whole life. What are we dealing with?" 

Jodi-Ann Burey: But I think this is important, because nobody wants to have these  conversations.

Kimberly Young: No, you don't. 

Jodi-Ann Burey: This is real courageous conversations. 

Kimberly Young: Absolutely! 

Jodi-Ann Burey: You're in a situation where you are advocating and working for, to make sure that this woman lives. Right? 

Kimberly Young: Absolutely! 

Jodi-Ann Burey: And also planning for her passing, and what logistically needs to go down. And  so having that logistical, analytical hat and the daughter hat. You're wearing all  of these hats just to try to navigate something. So something that feels so intimate, so personal, so relational in some way. Then becomes super logistical,  really administrative. 

Kimberly Young: Yeah. 

Jodi-Ann Burey: So how did you get connected with the Leukemia and Lymphoma Society? 

Kimberly Young: So when we first found out my mom had got diagnosed, her doctor, God bless her heart. Love her. She was saying that there were different companies out there who does, I think they give grants and things like that, for these high cost drugs and things of that nature. So she was going about, finding some resources. And then myself, just the person that I am, I'm like, "Okay, it's almost  like going to college. I'm going and get me some scholarship money. I'm going to find me some grant money for something so..." [laughter] 

Jodi-Ann Burey: Find it. Fill in the gap, yup. 

Kimberly Young: We're going to figure something out. Is it military? They cannot find us some  cancer buddy for military. My dad's a veteran, so let's figure this out. 

Jodi-Ann Burey: Yes. You really have to exhaust your resources. 

Kimberly Young: You do, and thank God. I actually saw it myself, and I just didn't look into it  enough but then her doctor, when I brought it to her attention, she said, "Oh yeah, LLS is one of the companies that we actually introduce our patients to, and I'm like, "Oh cool. Let's explore this."

Jodi-Ann Burey: With those introductions [laughter]. 

Kimberly Young: And so it took off from there. And my mom and myself, we got connected with one of their liaisons or advocates. They explained to us the process. Thank God,  again, here comes my insurance experience coming into play. Okay. So you got  to use claims in order to get this, submit those claims in order to get this money that was granted to her. I knew the claim process, I'm like, "Well, how do we do this? Are we submitting it? Are you going to go straight to the hospital? Have them submit it to you? Is there a certain form? If you don't know that, it's very daunting because if you have no experience in the health industry, you're like,  "A claim? What? What is that? And how do I go about even submitting that?" 

Jodi-Ann Burey: It's hard. 

Kimberly Young: It is hard. And it's like, you now become a claim specialist as a patient. In dealing  with LLS, they made it very easy for us to navigate, and they made it very easy for us to get the grant money. And thank God, my mom was able to get it because it did help with a lot of her bills. If it had anything to do with her cancer treatment, that bill got paid, and those claims were paid through them in tandem with the insurance. So she might've still had a bill, but the bill was not astronomical. It wasn't $300,000. It might've been a couple of hundred. We can  deal with a couple hundred, but a couple of hundred thousands, no. So LLS was  very great in being able to help us navigate that. 

Kimberly Young: And then more recently, they sent something out about the African-American community with multiple myeloma. And they were asking for volunteers for those persons who were caregivers, and I just knew that was something that I wanted to do just by nature and in trade. And what I do functionally in my job currently, I deal with providers and hospital systems and things like that. It did come natural for me to be able to be an advocate because that's something I'm  usually doing. And doing it with LLS, I had the space to do it at faith-based organizations, which is second nature to me. 

Jodi-Ann Burey: Like, "I grew up in this. This is my people." 

Kimberly Young: Yeah. I grew up in this, so this is something I want to do anyway because while we're always feeding people spiritually, we need to feed people and help them  understand physically what's happening with them, and we need to educate them. It's not just only educating them in the word, but let's educate them in real life experiences and real life stuff that's happening. So that's how I got involved and became an advocate working with faith-based organizations in order to get the word out about multiple myeloma, especially in our African American communities. 

Kimberly Young: So that's what I'm doing now. I'm going to continue to do it because I feel like that's going to be a legacy for my mom. And I feel like I'm honoring her in doing so because I just wanted to share what we went through and help other folks help them walk through this experience. If there's anything that I can lend or help someone in this, that's what I want to do. So I feel like this is the venue that I can use in this platform, that I can use in order to share this experience with other folks.

Jodi-Ann Burey: Has your work in advocacy now changed how people see you or come to you for  support when they're navigating their health crisis or health journeys? Or I don't  know... Have you met other people in your community who have multiple myeloma? 

Kimberly Young: Yeah. It's funny because I just found out my cousin on my father's side, he passed away from it. I didn't know... He was a pastor too. Didn't even know he passed away from it. But because I had now started doing this working with the faith-based organizations, and I asked some to speak to his congregation about  it, he was like, "Hold up, multiple myeloma. My dad died from multiple myeloma." I'm like, "Really?" And he was like, "Wow, I wish I had you at the time to be able to help navigate this and help our family through this." 

Jodi-Ann Burey: Wow. 

Kimberly Young: And come to find out, I believe he said or might have someone in his  congregation that's experiencing it. So I really know that this would help that person. Not only that, but then my mom's brother, his wife has multiple myeloma now. We found out. And so now, I'm going to be in contact with them  and helping them, so this will be up close and personal where I can help them navigate through all of this. It's just funny because I do have family members and friends who will call me now, and like, "Okay." It's not even related to multiple myeloma anymore. It might just be anything. How do I 

Jodi-Ann Burey: I have this itch on my side. 

Kimberly Young: [laughter] What do I do or what kind of insurance should I get? I'm almost like Flo off of Progressive. 

Jodi-Ann Burey: Yeah, yeah, yeah. I might also call you, actually, if that's okay [laughter]. 

Kimberly Young: [laughter] Yeah. Exactly. It's like, "What?" So it's like, "Okay." I just think this  kind of opened up a door for me that I did not expect because I really wasn't making it a big deal. I was like, "Okay, I can do this. Let me help, let me give back." That was my mind. In my thinking, "Let me just join this and give back and get more information to help my mom." But now, I'm just going to continue  and take it to another level if I can. 

Jodi-Ann Burey: Yeah. And I think that's so important because you can know everything you  know, be navigating what you're navigating and still not be tapped into resources that are available to you, and you're like, "I got treated at Memorial Sloan Kettering, the creme de la creme of hospitals for cancer care." Right?

Kimberly Young: Yeah. 

Jodi-Ann Burey: And no one actually talked to me about, like, "Hey, do you need support filling in the gap because insurance is not always enough?" Sometimes knowing about these resources are just so happenstance, like you see an ad on TV or on the bus or someone comes to your church and they're talking about something like... I think it's on two sides. So for people who have these resources like LLS, what are some effective ways of just getting the word out because people just need to know, right? Then on the flip side, sometimes you just need it in your environment. Just some ambient knowledge of, "Oh yeah, I think I saw this thing  at one point," because you cannot know every single organization for every single potential disease or condition you may or may not get at some point in your life, right? 

Kimberly Young: Right, right. 

Jodi-Ann Burey: I don't know. It's hard. When you have the resources, you need people to know  that you're there. And for people who need those resources, they need to know  that you're available or even a crumb that you exist to start looking into what options that they have that maybe they're not given right away. 

Kimberly Young: Right, right. Yeah. And that's when I say to these organizations, "You need to be intentional in getting that information to everyone." For me, I think it starts with  that doctor, that PCP. It starts with them. Get the information out to them. Not  only that, but then if you know that it's prevalent like what LLS is doing, if you know it's prevalent in African-American communities, be intentional like they're doing now. Okay. Be intentional. So where do most of the African-American folks commune? Where do they congregate? Okay. So most of them may go to  church. They might go to the [01:26:52 inaudible]. They might go this place. Okay. So, all right. Say, they don't have a physician that they go to all the time, but they might just go to what they call the FQHCs or the federal qualified health centers, okay? 

Jodi-Ann Burey: Mm-hmm (affirmative). 

Kimberly Young: So they don't normally just go to their doctor, but they might just go to a  random clinic. Let's get the information there, so that the information is out and  folks know about it. So to me, I think these organizations have to be intentional.  They have to want to get the information out because like you just said, if you don't know you need the information, you don't know to go get it. You don't know where to look. So because you know as a company or as an organization that you have these funds available or you have these resources available. To me, it's up to them, not solely but majority of it is up to them to get the information out. And there are so many avenues. You have social media. They could use that platform, all of them, just use them all, and get that information  out especially with the younger generation because they're very quick to pass information and share it. 

Jodi-Ann Burey: Mm-hmm (affirmative) [laughter].

Kimberly Young: So if they're sharing it and not only will they not just share it amongst their  peers, but the peers will maybe send it upstream to those who might not be on  social media, like, okay, so now they found out about... "Oh, let me tell my grandmom about this. I know my grandmom has so-and-so and so-and-so so let  me get this information out to them." So I really feel like you have to have the intent of getting that information out, which is why I started volunteering for LLS because they contacted me, so that was the intent. So that mean they had some database, some form of reporting that they knew my mom fell in the system of an African-American woman who had multiple myeloma, so they took that information. They said, "Okay, how can we make contact with her? How can we make this  more widespread? How can we not only get the information to Carolyn Young,  but let's just see if this information can go beyond Carolyn Young, and how do we do that? Let's now tap, not only into Carolyn Young, but let's tap into her caregivers. And so to me, that's being intentional. 

Jodi-Ann Burey: Especially when you start going to caregivers [crosstalk 01:29:20]

Kimberly Young: Exactly. 

Jodi-Ann Burey: ... how can we forget about caregivers in this process? 

Kimberly Young: Exactly, exactly. So I think they did their due diligence in this. And I thought they, to me, had a very good thought process in looking at this, Not just with a tunnel vision, but they had a panoramic view of how this all comes into play. Not only caregivers, but now they're reaching out, of course, to the clinicians and to the faith-based organizations and to the clinics and to all these different things. So I'm like, "Okay, look, I'm liking the way you guys are doing this because you're looking at it from a 360 perspective, you're looking at it holistically." So I think when you have intent, you look at it holistically, I think you'll get the best... you'll get that information out to the masses. You're not going to reach everybody, but I think you have... 

Jodi-Ann Burey: Yeah. You might exactly find the person who needs you or you might just be  putting these crumbs in the culture, like putting crumbs so people can find it if they do need it. 

Kimberly Young: Exactly. 

Jodi-Ann Burey: I think a lot of times organizations, they rely on a famous person to have a disease or condition and that could really skyrocket people's just knowledge and  awareness of it. But it has to be more than that, it has to be more intentional, like you're saying, to really let people know what's going on because, like you're saying, if your mom's having pain and stuff, it's easy to brush it off. But if you just have some type of inkling of like, "Okay, actually, maybe it's something else," right? That can help you on that diagnosis path.

Kimberly Young: Absolutely. Absolutely. 

Jodi-Ann Burey: But beyond the treatment, you also need mental and emotional support, and I know that your family is so close. Every time you talk about your family, I just start smiling. Your parents were so close, but was your mom interested in... or were you able to find any support groups for her of folks who were also navigating something similar? 

Kimberly Young: She did with the LLS. 

Jodi-Ann Burey: Oh, okay. 

Kimberly Young: She did with those support groups, which was great because she definitely wasn't opposed to it. 

Jodi-Ann Burey: Some people are. 

Kimberly Young: Yeah. Some people really are. She wasn't opposed to it because she wanted to find more about it. And because we didn't know anybody who had it, she's like,  "Okay. I hear what the doctors are telling me, but they're not the patient. So I need to hear it from a patient's perspective." She did link up with other patients  through LLS, and I believe through her doctor who had other patients that she recommended my mom speak with 

Jodi-Ann Burey: Oh, that's good. 

Kimberly Young: ... which was good. 

Jodi-Ann Burey: Yeah. 

Kimberly Young: Yeah. And not only that, but then through word of mouth, again, within our  community. We hear one thing, and we just know somebody has it. 

Jodi-Ann Burey: Yup, yup. 

Kimberly Young: It's funny because as soon as somebody hears cancer, they're like, "Oh, so-and so had cancer. They got so-and-so treatment." Might not be the same cancer. 

Jodi-Ann Burey: Not same cancer. 

Kimberly Young: Not the same cancer but because we know somebody, we're going to refer  them. And it's funny because my mom happened to get referred to this person  by happenstance because somebody else who had a different cancer that's able  to refer her to someone who actually had what she had. So she had that experience, and she was a big proponent of actually being able to speak with other patients because it's nothing like speaking to somebody else who experiences what you experienced. I couldn't speak with her about what it felt like. I only can give my opinion, but that person who was able to give her details  even of what could possibly happen next or when you experience this, kind of do this, this is what worked for me. Those support groups, I would encourage. 

Kimberly Young: Even those who aren't listening will listen to this. I think they're good because you get a perspective of somebody who's actually going through it, and not someone's opinion of what it might be because, most likely, the doctor that's treating you is not the doctor who's actually having this disease. It's very rare that you find the doctor who actually has that cancer that's treating you for that cancer. 

Jodi-Ann Burey: Mm-hmm (affirmative). 

Kimberly Young: So that's what I would say to that. 

Jodi-Ann Burey: I'm so grateful for that because it could be easy to think that she wouldn't, right? She wouldn't go out and find support groups. And I went through different moments where I felt like I wanted to talk to someone and other moments where I'm like, "No, I've got this. I'm good." I don't want to because it's too emotional. But once I started talking to other people, like you said, when  you can really start sharing in different elements of the journey that you can't talk to your doctor about it, and she probably can't even talk to you about it, right? 

Kimberly Young: Right. Mm-hmm (affirmative). 

Jodi-Ann Burey: You just wouldn't understand it at that same level and so to just know that your mom had so much support from all different fronts, I don't know, that matters a  lot, especially as black woman, to know that she was so supported. 

Kimberly Young: She really was. She really was. 

Jodi-Ann Burey: That just... Yeah. That... 

Kimberly Young: It's almost unheard of because she had some terrific doctors. Her one doctor would consult with one of her peers, who then actually took on my mom's case to give her another angle of different trials at a whole entirely different hospital  system, and this is one of Pennsylvania's elite hospitals. And he took on her case  and became her doctor, so to speak, and they became co-doctors and working together and networking. I'm not going to say that is unheard of or that doesn't happen, but just in my experience, I haven't seen it. 

Kimberly Young: And it was so great that she had such support within the health systems and then also with us and then also my church, they supported her as well. Not just  my church, but the affiliated churches that we congregated with and fellowshipped with, so it's good. Not everybody has that. And that's when I'm hoping to help people navigate and help them to know that you can get support if you don't have it. And even if you do have support, you can get more support. I don't think you can exhaust support if you ask me. 

Jodi-Ann Burey: No. 

Kimberly Young: Because with support comes resources [laughter]. 

Jodi-Ann Burey: Exactly. And especially with cancer, like when I got my diagnosis, I put it on social media, I was calling people who haven't talked to in years, and I just was...  I think what I was trying to do is just tell as many people because you never know who knows somebody who knows somebody 

Kimberly Young: Absolutely. 

Jodi-Ann Burey: ... who could get you, right? 

Kimberly Young: Exactly. 

Jodi-Ann Burey: And so sharing the information, having that moment of vulnerability can open options for you if they can connect you to resources, even in some happenstance way. 

Kimberly Young: Yup, yup. Yeah, that's true. And it's funny you said social media, I'm not big on social media like that, but I have been thinking about that because now that's opened me up, and I'm like, "Okay, Kim, you don't have to be so dead set against it because that's what, Kim... Because you know about resources and you know about collaboration, okay, Kim, this is an avenue. Look at it as an avenue to be able to get the word out. Not only get the word out but get some word back for you of what you can do or how this can work." So I am exploring  that, and I'm opening myself up to that because, at first, I was dead set against  it. I'm like, "I'm not going to announce this. I don't put this on Facebook. I don't..." Because I feel like I don't need to live my life on Facebook. Everybody doesn't know everything that's happening. 

Jodi-Ann Burey: No. I hear that but then... 

Kimberly Young: You know what I mean? But then... But by the same token, I could be getting  this information out to other folks especially if someone knows about the journey that my family has experienced and my mom, especially those who are  connected to me, because I know a lot of people and I don't even know if most  of the people I know know that my mom passed because they know how close we are. But me even doing that is something I'm considering so that I can use that platform as a way to get information out, especially diseases and things like that that could affect our community. And it's prevalent, from what I understand, that multiple myeloma is very prevalent and it's just that no one speaks about it. So, yeah.

Jodi-Ann Burey: Yeah. And I think it goes back to what we were talking about in the beginning about boundary setting, right? There's a part of your journey that can exist publicly, there's a part of the journey that you leverage for your advocacy work  and supporting other people, but you also have to take care of yourself. And so there are parts of your journey that people will never know, right? That's for you, that's for your family. And just trying to create those divisions can be tough, but I think it's necessary. At least what I found necessary to talk about difficult and traumatic things publicly is saving part of that story for myself and  what is part of my advocacy and my support for other folks who are navigating  similar circumstances. 

Kimberly Young: Right, right. Yeah. That's a good point. Yeah. Yeah. That's why I'm definitely considering it because I'm like, "Okay, Kim, you need to. If you're promoting this and okay, that's great that you're doing this at the faith-based level, but how much more would you be able to spread this information if you share your story?" 

Jodi-Ann Burey: Yeah. 

Kimberly Young: So that's big. 

Jodi-Ann Burey: I'm so grateful to you for even sharing your story on this podcast. And,  hopefully, this platform can be such a amplifier for the work that you're doing and also getting the word out there about multiple myeloma. It is not something  I even knew about until we were speaking about it. There were a lot of Googles and stuff that I have to do, and I think about it more now. There's just so much out there that we don't know, and we have to be vigilant about our own health,  what's going on in our bodies, and how we're taking care of each other. And so  thank you so much for 

Kimberly Young: No problem. 

Jodi-Ann Burey: ... baring your story 

Kimberly Young: My pleasure. 

Jodi-Ann Burey: ... on this podcast. I will definitely, definitely be calling you to help me figure out what my next health insurance planning will be [laughter]! 

Kimberly Young: Okay [laughter]. That's all good. It's good. 

Jodi-Ann Burey: Before we close close, is there anything that we didn't get to that you want to share with folks that are navigating a similar experience? 

Kimberly Young: Love is always the foundation because there's nothing like having a support  system. I definitely believe that everyone needs someone, so I would say glean  and lean on anybody who's offering you the help because support comes in different fashions in different ways. So family, friends, whomever that's offering that support that's positive, I would say take it because you'll need it whatever it is that you're going through. 

Jodi-Ann Burey: Yeah. It's a good point. Can't do this on your own. 

Kimberly Young: Yeah. 

Jodi-Ann Burey: So whether it's your blood family or chosen family, you can't be on an island  through this. 

Kimberly Young: Nope. 

Jodi-Ann Burey: Yeah. 

[music fade]

Jodi-Ann Burey: Black Cancer is created, edited and produced by me, Jodi-Ann Burey. And thank you so much for joining us for season three. We are still out here, gals, sharing our stories. Thank you so much, Kimberly, for sharing your story with us. Thank you to the Leukemia and Lymphoma Society for sponsoring the special series on  multiple myeloma. You can learn more about LLS at lls.org. To make sure that other Black Cancer stories become center to how we talk about cancer, rate, subscribe, leave a review on Apple podcast. Find us online at blackcancer.co and on Instagram @_black_cancer. Trauma comes with endless wisdom for ourselves and those around us. Tell someone you know about Black Cancer. 

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