Full Episode Transcript

Episode 2: I Don’t Have Any Limitations (with Kelvin Yates)

Transcription Edited by: Genneil Martin

Running time: 1:35:48

Kelvin Yates: Today just ain't going to be that superstar day. Tomorrow may not be that superstar day. Even the day after tomorrow might not be that superstar day. But you know what? When I do hit that day that I'm hitting on all points and all cylinders, oh man. You know what? I will wear it out [laughter].

Jodi-Ann Burey: No, I love that. Bringing awareness to those really good days.

Kelvin Yates: Yes. I will wear it out. And don't let it be my day off.

Jodi-Ann Burey: Can't stop me [laughter].

Kelvin Yates: [laughter] Can't stop, won't stop.

[music]

Jodi-Ann Burey: Welcome to Black Cancer. I'm your host, Jodi-Ann Burey. Our guest on today's episode is Kelvin Yates, who uses his experiences living with multiple myeloma to advocate for change in his community. He's a father, husband, son, hobby woodworker, and a survivor, and surviving in ways that continue to make a big impact on me. Of all the people I've met through this podcast, Kelvin was the first person who also heard the word paralysis when he found out about his condition, and he faces very, very similar neuropathy as I do. For those who face neuropathy or love someone who has neuropathy, I have something special for you, for the first time in Black Cancer history I'm going to put out a featurette later this week where Kelvin and I just talk about neuropathy, so stay tuned for that. Today's our second and final episode this season that highlights multiple myeloma. Thank you to the Leukemia & Lymphoma Society for making these past two episodes possible, and for all the work you do to support individuals and families navigating multiple myeloma. You can learn more at lls.org/myeloma-link. Here's my conversation with Kelvin.

[music fades]

Jodi-Ann Burey: I walked away from our last conversation so energized. I was skipping down the street [laughter]. I felt so energized from that because our experiences are so different, but they map on in really interesting ways where I haven't found someone else who [laughter]... Thinking about the shoes, when I was like, "Do you know how many shoes I have?" Just trying to figure out what fits for my back, and my body, and my neuropathy, and all this kind of stuff, like, "Oh, me too." I don't know. It just meant a lot to just talk to you last time.

Kelvin Yates: Right. And it was crazy because I was thinking the same thing. I was like our situations were different but so much the same in a way on how we had to figure out the different ways to really survive now because we've gone through this trauma with our body, and unfortunately we're left to pick up the pieces, and we have to try and figure it out because nobody can teach you how to do certain things, like the right shoes, the way I was talking about, or how to keep your hands or feet moisturized so that the neuropathy doesn't destroy you, or you're having the worst day ever because you can't touch anything because your hands are so sensitive. So yeah, I mean I was the same way. I was just like wow, I can't believe this. So yes, I know exactly where you're coming from. That's why I was like wow, this is going to be [laughter] one for the books here [laughter].

Jodi-Ann Burey: Well hopefully.

Kelvin Yates: I get to collab with somebody who knows what I'm talking about. You always hear about people, "Yeah, I collab with her or him," and it was yeah, this is it right here.

Jodi-Ann Burey: This is it. No, I feel that. And as you talk about the chronic pain, there's so much isolation, I think, because there are all these little weird things that bother you that don't make sense to other people. And after talking to you, I couldn't stop thinking about pain and just the amount of energy, mental, emotional, physical energy, finances that I put to pain management. And I don't know, it was just resurfacing after we spoke because I was just like man, I wonder what your take is on pain and just constantly navigating it. I'm so tired of thinking about pain. So done. And it becomes deeper than just what's happening with me physically, because I think as people of color, especially black people, managing chronic physical pain is just one aspect of our lives as a result of what happened to us, but managing chronic mental pain, emotional pain, I'm also tired of that.

Jodi-Ann Burey: And I feel like we get socialized to ignore our pain or having to overcome our pain, and when I look back to my story, I see all the flags in my diagnosis path that I was ignoring because of the sense of just do it, just get it done, whatever. You're in pain, duh. [laughter] You're black in America, when are you ever just chill? And it just took so long, it had to reach an extreme for me to actually start looking for help. And so I'm curious for you, how it started for you. What was happening in your body? What was your body trying to tell you and how did you respond to it over time?

Kelvin Yates: It was the same situation where I've never had pain before, so even when I did come a crossroad with it, I didn't know what to do. I mean it was like all right, well just take a couple of Tylenols. You'll be fine. I'd get the work, they're like, "Oh really? Your back hurts? Hmm. You probably just did something here," and I'm thinking to myself "Yeah, that's what I did. I probably hurt it at work. I'll be fine in a couple of days." When in actuality, I probably should have been paying attention. Maybe I won't be in the position I'm in today to where it's chronic pain now because I let it go so long when I did. But then again, who's to say that? But I continued to do my everyday life, run wild, cut the grass, do things not that we're expected to do, but that we want to do to maintain this lifestyle of a nice yard, or not letting somebody at work think that you're not up to the company standard, or something like that. So I think for me, I just ignored it. I'm too tough for that. I can endure pain.

Kelvin Yates: I mean I was literally almost in the fetal position when I finally decided to go get it checked out the first time. So I'm like there's a stigma of if you go to the doctor too many times, then it's like you're hypochondriac. That stigma somehow needs to be erased. I mean if we have something wrong with our bodies, it's almost like we need to get it checked out. Stop trying to be tough guy or that woman that wants to be above it all. We just got to stop, figure out what's going on, and let's get it addressed. But yeah, for me, I continue to go on, and on, and on, and let it linger, linger, linger. End result is even more catastrophic then, because I see people today with the same disease, a couple of weeks later, they're fine again. But you know what? They didn't let theirs get to the extreme I let mine get to which, in retrospect, I just look like what have I done to myself by trying to be above and beyond?

Jodi-Ann Burey: No, that's real. When we spoke and you were talking about the back pain, and you said, "Am I standing up straight? Okay, cool. I'm going to work." And I'm like is that the baseline? [laughter]

Kelvin Yates: [laughter] Right.

Jodi-Ann Burey: Oh, if I could stand up straight, no matter what I'm dealing with, okay, I'm still going to go and live my life. I hate that so much, for you, for me, for all of us. I want to be the type of person that as soon as something itches me wrong, I'm like I'm going to die [laughter].

Kelvin Yates: Right. That's the way I am now.

Jodi-Ann Burey: Oh, my knuckles itching me [laughter]. I got to go to the doctor, who's like, "Why are you coming here for this?"

Kelvin Yates: [laughter] And then I don't know about you, now, because I am that I want to make sure there's nothing wrong with me, so I will schedule an appointment for something that seems out of the ordinary, and then you get to the doctor and he's just like, "Oh, well it's just this." And I'm looking at him like what? [laughter] So you get to that point and you're like well, when do you go to the doctor or when do you just nurse it as is? That's the thing now, it's like at what point do you go get it checked out, or do you just let it go and hope that it's going to someday disappear?

Jodi-Ann Burey: Yeah, but it's like your body will, [laughter] "Oh, I'm sorry. Did you not hear that?"

Kelvin Yates: [laughter] You right.

Jodi-Ann Burey: And it'll keep coming back. So I want you to take me through the back and forth of when you were going to the doctor and trying to get diagnosed, and what that diagnosis path was until things started really moving, and finding out what was the cause of the back pain that you were having.

Kelvin Yates: Early January of 2015, started getting this nitch in my back and I'm like whoa, what was that? So kept going and end of January, we do a physical inventory every year at work. We have one long day, it's usually a 12 hour day, so get to that morning and I'm like wow. I felt like crap. I probably got a pulled muscle. So pop a couple of Advils and go into work, get halfway through the day and I'm like whoa, I am really feeling like something's wrong. So finish out that day, get home, moved to that Sunday, get back to work, and I'm feeling even worse. The other two managers I was closing with was like, "You probably need to go to the doctor."

Kelvin Yates: So I jet over to the emergency room when I get off work that night, and they were like, "Well, here you go. We're going to give you this, make you feel comfortable. If you don't feel good the next day, come back and see us." Give me that, I'm leaving out of there, feeling good. It's about 2:00 in the morning, 2:00, 3:00. So Monday, I get to work and I feel a little better, but I know I'm not all the way there.

Jodi-Ann Burey: And you start convincing yourself like, "I feel better. It's working, right?. I just got to wait for it to kick in." And it's been five hours, and you're just like, "Oh yeah, I'm not feeling better [laughter]."

Kelvin Yates: Yeah. So I get through that day and I'm like oh my goodness, what the heck? I'm freaking hurting. But if I get through this day, I'm off that Tuesday. So I'm like let's get through Monday. We're good. So get through Monday, wake up Tuesday, and I'm like crap. I had an appointment with my primary care. So I go in there, he takes some x-rays, but he's like, "Sound like you might just have a pulled muscle. I'll give you this to make you comfortable." So it was, I don't know, something 500, Tylenol 500, something that was a little stronger. So I had that, took my x-rays, went home, that was Tuesday afternoon, and went back to the emergency room that night.

Kelvin Yates: So they were like, "All right, well we know you went to the doctor that day," and they drug me up again, sent me back home, and I was like well, something isn't right, but I'm not sure what it is. I said, "I've been here once before a couple of days ago," and they were like, "Well, leave it. It's probably just a pulled muscle, and there's not really anything we can do. We can't treat you for that. If you go home and relax, if you don't, then come back." So this is the second time over there at the emergency room. So go home, next day got to work and I was hunched over. They told me, "You got to go home. There's something wrong."

Jodi-Ann Burey: When capitalism tells you to take the day off, you know [laughter].

Kelvin Yates: Yes. It's like okay, something's wrong here. So I called my wife, like, "Well, I'm on my way back home. Something isn't right." I said, "I'm feeling" ... And she saw me that morning, but she was like, "You probably should go back to the doctor or something." But I was like, "I'll be fine. I'm getting better." At least I was telling myself that in my head, knowing I was nowhere near getting better. I mean I was literally getting worse. So by the time I got to work, I couldn't even sit up in the chair. I was like, "Ughhhh" scrunched down, trying to figure out okay, what do I do here? And at that point, that's when I was like all right, came home, ran me over to the emergency room. So I'm there and she's like, "Well, he's been here three times. You guys got to do something." It was like there's got to be some ... There's got to be something you can do. And it was funny because it was a nurse practitioner on board. And this is why I always say nurse practitioners, all you out there, you guys are angels.

Jodi-Ann Burey: Absolutely.

Kelvin Yates: Godsend.

Jodi-Ann Burey: Thank you for your service. Seriously.

Kelvin Yates: Exactly. Of course, they did the blood work and all this stuff, and by this time it's probably about four o'clock in the afternoon. I got there about 10:00 in the morning. And that's right before my life had forever changed. When she came back in the room going, "Mr. Yates, you have what they believe is multiple myeloma. You have cancer." The room just stopped, because my wife had to go to work, so she had left. My mom had replaced her, had come up and taken over, because she was like, "Well, something's wrong." She had called my mom, said, "Kelvin's not doing good. He's here at the ER." And so my mom was up there by this time, and I look over at her like what just happened?

Jodi-Ann Burey: You sit there and these words, cancer, whoa. Are you even present? Are you conscious? What is going through your mind?

Kelvin Yates: And so you have to figure, by this time they had given me morphine and all these other drugs, and they had started IV fluids. So I'm laying there in and out of it anyway. And then to hear that, I look over to my [laughter] [crosstalk 00:16:41].

Jodi-Ann Burey: In you're drugged up stupor.

Kelvin Yates: Yeah, like what did she just say? Huh? So it doesn't even register as I'm laying there. And I'm like all right, well what time am I leaving this place? When can I go home? At least that way I can get home, get in my zen place [laughter], and do what I got to do to get through this. "Well, Mr. Yates, I'm sorry but we're going to be moving you over to the main hospital, because this is pretty serious. You have multiple fractures in your vertebrae, your T10 and your T12 are fractured so bad we're concerned that you will be paralyzed if you get up, and you walk, and you do this, and you do that." And I'm like where's this coming from? Why are you telling me this? And I'm just like no, this isn't happening to me. This isn't happening to me. And mother's first instinct was pray. "Come on, we got to pray. We got to pray."

Jodi-Ann Burey: Were you even aware, did you see her ... I mean you were drugged though, so I don't know if I trust your memories [laughter], but did you even notice what was happening with your mom before she called y'all to the altar? Or did you even have awareness to see how it was landing on her as you're trying to figure out what it means for you?

Kelvin Yates: I didn't, because your world stops when you're told that. Everything around you is like ... I remember the practitioner telling me, "You got all these fractures in your back," and I'm laying there, but in the background it's like, blah, blah, blah, blah, blah, blah, like you see in the movies.

Jodi-Ann Burey: Like was it Charlie and the Peanut Gallery or something, and all the adults, just you can't hear what they're saying?

Kelvin Yates: Yeah. And I mean I had looked over for her reaction, but to this day, I don't remember what her reaction was, I just know that I looked over like they can't be telling me this. This isn't happening to me. This can't happen to me. What do I do? I got so much going on. And the funny thing was all I could think of was I still have work going on, I still have a house to take care of, I've got my shop I got to get back to someday, my wood shop, all these things. I don't even realize okay fool, they just told you you have cancer. That's where your focus needs to be. But we are so trained in our lives to realize okay, how am I going to get this, this, and this taken care of, you don't even realize that okay, don't you realize you have cancer. That needs to be your top priority.

Jodi-Ann Burey: That's the halt. Because I remember when they told me and my doctor, he's like, "Oh, and we have you with a surgeon consultation in the morning." And I'm just like I mean, do I have meetings in the morning? [laughter] I [inaudible 00:20:03] about this. And then I'm like oh wait, whatever was on my schedule doesn't matter anymore.

Kelvin Yates: Right, yeah.

Jodi-Ann Burey: It doesn't matter. And that I wonder is why people don't go to the doctor, because it's like oh, it's not a good time. It's never a good time.

Kelvin Yates: Right. And I would say this area especially, and I'm sure it's probably same in New York, everything is go, go, go. I mean even now, they build houses so you don't even have to cut your grass. You know what I mean?

Jodi-Ann Burey: God damn.

Kelvin Yates: But here I am, I mean my grass and my house is everything to me. So I'm like when can I get up off of this bed? And, "No, Mr. Yates, it's not that kind of party." So I'm laying there like wow. Wow. And all I could do is just lay there in disbelief. Wow.

Jodi-Ann Burey: How did you feel about your mom immediately taking y'all to prayer in the doctor's office?

Kelvin Yates: For me, it was so comforting. She's always said, "You know what? In a time of trouble, if you pray, reach out to him, he'll be there for you." She jumped right in. It wasn't even a thought of where we're at, who's around, this is what we got to do. She's always instilled that growing up. And as kids, and you get into adolescents and young adult, you get out and you run the streets, and you do these things, and always playing in the back of your mind that, you know what? I always know who God is. And I always know who to turn to in a time of need. So it wasn't even a question of, "We're not in the right place for that, Ma." It was like, "Do your thing. You're the way maker at this point in time."

Jodi-Ann Burey: Yeah, I'm calling the reinforcements, calling God, calling the ancestors. Do we need to get some crystals? What do we need?

Kelvin Yates: [laughter] Yeah, exactly.

Jodi-Ann Burey: I need the whole Avengers squad right now because they just dropped multiple myeloma on me.

Kelvin Yates: Yes, and I don't know what to do! Never heard of it. And they're telling me I'm not going home. I'm not going home. I'm like, "What do you mean by I'm not going home? Am I dying here?" "No, Mr. Yates, you're not dying here, but this is serious." So they're like, "Well, we'll have a transport come." And here I am thinking oh, well my mom can run me over to Fairfax hospital. It's just right up the street. "No, Mr. Yates. No, Mr. Yates." I said, "Can you stop calling me Mr. Yates? I'm Kelvin, okay [laughter]."

Jodi-Ann Burey: [laughter] That's when you start getting annoyed at anything.

Kelvin Yates: Yeah, where you go from being in pain to I'm not in pain anymore, I'm angry at this point, because you've just told me something that in a sense hurt my feelings. I've played this tough guy for such a long time and you just told me something that hurt my feelings, and I can't do what I want to do at this point to fix it. So yeah, wow.

Jodi-Ann Burey: To say that something hurt your feelings, it's something that we say so often, but it really impacted me because I think it's a sense of you go so core to your personhood and your community, even saying, "Don't call me Mr. Yates, it's Kelvin," you're trying to find some ownership of yourself. And when you strip yourself down to that, it's just like man, you hurt my feelings. That hurts me as-

Jodi-Ann Burey: ... a person.

Kelvin Yates: Yep. You know, these emotions you go through and then... All right, so what is next for me? Where do I go from here? I've got all these emotion I'm feeling, and I'm getting through it. But then when the transport team comes here, and I'm like, "Well, I can get up, and get on the gurney." And they're like, "No, you can't." And I'm like, "What do you mean by I can't?" And the transport team is like, "Okay, Mr. Yates, come on." There's like four or five people coming over to literally pick me up, and put me on the gurney. I said, "I'm okay. I can walk."

Kelvin Yates: And then, it's like back to that anger thing again. "You guys have already cut me enough. You've cut deep enough, with telling me this, and now you're telling me I can't move from one gurney to another." "No, we, we have to do it this way." It's not like I can say "No, don't do this."

Jodi-Ann Burey: And I hate that, like a whole grown adult, they won't let me do this thing that I want to do, I know that I can do. I walked into your office, and now I can't do this, I can't do... That's tough for me, right? Like just hearing that. I've been in all this pain, you've been going to work, you've been supporting your family, going back and forth to the emergency room. You've been managing all this through the pain, and then suddenly it's like no.

Kelvin Yates: Yep. And by this time it's like 7:00, so I've been laying there all day, I'm hungry, I'm irritated. All those frustrating things that come with being told you have cancer, and not being able to fend for yourself in a sense. Because now, what they've done is, they've come in, they've kind of taken over your life, in telling you what to do. It's like, am I in prison or what? I can't deal with this, so let's get this thing on the road." So they shift me over to the gurney, and then it becomes from the paramedic team. So what's going on today? As they're transporting you ... [laughter].

Jodi-Ann Burey: It's not the time for small talk, bro [laughter].

Kelvin Yates: [laughter] Yeah, right.

Jodi-Ann Burey: They're just trying to be nice, and you're like "I hate you [laughter]."

Kelvin Yates: As I'm laying there like, "Well they tell me I have cancer." And they're like, "Oh, we're sorry to hear that." It's like, "Don't be sorry, I want to be a'ight, I want to be me, I want to be Kelvin again, I lost something here today." It was tough. So fast forward to that night, get me into the Fairfax Hospital, the main hospital... Hats off to them, they're one of the best. Get me over there, and I'm in a room by myself and thinking once again, how did I get here? Why me? I just remembered the boss once said, "You know instead of saying why me? Switch it to try me." Not why me? Try me, and my cancer journey began.

Jodi-Ann Burey: They always use like warrior battle, war language when it comes to cancer. And that kind of try me, it's so combative of like, all right, bet. And I think there's that sense of, person having ownership of yourself, where you're like, "Oh, you're not going to..." Then you start to like distancing yourself from the thing that's in your body, of like, "No, we're going to go at it now, because I'm taking the reins here."

Kelvin Yates: Yes, mm-hmm (affirmative).

Jodi-Ann Burey: Because you've been back and forth to emergency room. What was the trigger for you? Or maybe it was your wife. I don't know, bless her heart. That was like, "You are not going to this next doctor's visit, or emergency room visit by yourself." You ended up in the circumstance where, when you got the diagnosis, you were with family. Did something feel different where you're like... Or maybe it was your wife, who was like, "We need to go with you, someone needs to be there with you."

Kelvin Yates: What it was, it was my wife, because I kept saying that I feel like I'm having muscle spasms. She was like, "You need to stop saying that, you need to go in there, tell them you got a problem with your back, and they need to figure it out." And I think that was part, the wording I was using. It kind of put me in that awkward position of, "Well, he feel like he's..." Because you know, they always ask, well, what's going on today? It's like, "Well, I feel like I'm having muscle spasms." Well, little did I know what the muscle spasms were, where the fracture vertebraes pulling on the muscles. If it wasn't for her saying, "Stop telling them you're having muscle spasms, because that's not the problem. They think you hurt your back at work. You didn't hurt you back at work, something is going on."

Kelvin Yates: And even when she got there, she was... Because you know, I was going to hit the, "Oh, I feel like I'm having muscle spasms." She gave me that look, like "Don't you dare."

Jodi-Ann Burey: "We talked about this" [laughter]. "We talked about this in the car."

Kelvin Yates: Yes [laughter]. Exactly, right? And she was like, "There's something wrong with his back, you guys need to do something. I'm not trying to be the mad black woman." But, it was getting ready to come out. And I think if it was a doctor, I think she would have went rogue on him. But I think by it, being a nurse practitioner who was like, "This is what we're going to do, this is what we're going to look for." I think, gave her the sense of, they're finally going to do something now, and not just continue to treat him and send him home. With that, they were like, "Blood work it is" [laughter].

Kelvin Yates: They leave the room, "You were about to say you were having muscle spasms." I was like, "No, I wasn't. I wasn't, and I'm hurting. My back. I feel like the guy is riding my back" [laughter].

Jodi-Ann Burey: I don't care what your sexual orientation is, or whatever. If you do not have a woman in your life who loves you, you can not survive. A woman in your life who loves you.

Kelvin Yates: Absolutely. Because there are things as a man you just won't do, or won't fess up to, whether be you're just in a bed, like, "Oh my back." As a woman, she's going to step in and nurture you. And we need that, we do.

Jodi-Ann Burey: Yeah, And I think too, like as a black woman myself, when you're talking about ... oh, she's about to... It's coming out like, release the hulk, right? You have to do that so often to be seen, and to advocate for yourself, and to advocate for other people. And so I get that, when you're like, "All right, okay." And you start raising the temperature, like you got to get there to start getting the things that you want, and I feel like... Especially as a black woman, I'm so accustomed to that, "Oh, you're going to get your blood work that day." That definitely was going to happen.

Jodi-Ann Burey: But I ask about having the family there, mainly because I'm a little jealous, because when I got my diagnosis... I live in Seattle by myself. I'm not married, my family's not there. I went to the doctor's office on my own.

Jodi-Ann Burey: I had a feeling, something was off. So I had called my best friend, who's a nurse practitioner, shout out. Like three times on my way there, and she did not pick up. When I got the diagnosis, I called her right away. So I think because she'd seen me calling so much, whatever she was doing, she had picked up. Like I had someone there with me over the phone.

Kelvin Yates: Ah. Okay.

Jodi-Ann Burey: What was really tough is, I remember when I left the office, I called her again, and I was just shaking. And even though the drive was like... It's only five minutes between the office and my apartment, I couldn't make it. I felt so alone, so isolated. And all I had was this voice. And she's trying to tell me like, "I don't think you should drive right now." And I remember snapping back, "It doesn't matter, I'm going to die anyway." And I think that was the first time I ever drove without a seatbelt on.

Kelvin Yates: Wow.

Jodi-Ann Burey: I was kind of losing it. Man, I wish I had someone with me physically there. I wouldn't ever admit to wanting that, like, "I'm fine, I'm good, like I can handle it." But when I hear your story, that your mom was just able to just pray with you right then and there, or like your wife was able to help advocate for you. No, I didn't have that.

Kelvin Yates: Right.

Jodi-Ann Burey: But on the flip side, I'm curious for you, you had that support that day. They dropped multiple myeloma on you, you have this whole thing with transferring to the next hospital, and then you're alone. Like what fills your head? Is it the, why me, try me? Is that what you were debating in those moments, where you were all by yourself?

Kelvin Yates: Things were still going pretty fast. So I'm trying to slow time down at that point. I'm trying to gather my thoughts on what's going on? Why am I here? And then the anger starts to kick in on that, why did I allow this to happen to myself? Not even realizing, I had no control over this whatsoever, but I'm mad at this point. Like why? They may come in, and they got to do their assessment of you, when you get there. So it's like, they're looking at your IV, and they're doing this, and they're doing that. And they're poking at you, and I'm like, "I'm hungry, can I get something to eat?" I hadn't eaten all day, they wouldn't let me eat. So then you got the hunger-anger on top of the anger of being told just about six hours ago, you have cancer.

Kelvin Yates: So you're battling with that, then the family aspect of things kick in. I got my son, my daughter, what do I do now? How do I tell them this? Am I going to survive this? How am I going to tell my family this? How do I explain to my daughter, who's nine years old at the time? How do I tell her that I have cancer? She's going to ask, why am I in a hospital? These things are running through your head, and it's 10:00 at night. And the nurses are poking at you, like I said, they're looking at my IV, they're doing the assessment, does this hurt, does that hurt?

Kelvin Yates: And I'm like, "Well right now, and I'm not feeling much of anything, but I need you guys just to leave me alone. Can I get through the night? Leave me alone." "Okay, Mr. Yates." So they bring in some sandwich, the best sandwich I ever had [laughter], and the cheese croissant, I had a apple, and a cookie, the best meal I've had like-

Jodi-Ann Burey: [laughter] I can see in your face now, like you're all having cheese, with a cookie? Come on.

Kelvin Yates: [laughter] Yes, the best meal I ever had. So that brought me down a little bit, but you lay there, and you get through that. And there is no rest. They're like, "You know get some rest."

Jodi-Ann Burey: Yeah. That's the biggest joke over hospital experience [laughter].

Kelvin Yates: Right. Yeah get some rest.

Jodi-Ann Burey: Rest really? You're all in and out of here. There's beeping all over the place, the lights are always on, there's people going back, where am I supposed to rest? Also, I'm in pain, I'm scared. I don't know what's happening.

Kelvin Yates: Right. And they're like, "All right, we'll make the pain go away." So then I'm like, "Okay." It's like, there is no rest. So, I had that night of just thought, and then my mind starts running again. Family, work, home, bills... You hear cancer stories of people can't afford to survive, because it's just so expensive. Where am I going to get the money to take care of this? I'm middle-class, I'm not rich. I don't have the money to take care of cancer.

Jodi-Ann Burey: And cancer will wipe out whatever savings you thought you had your emergency fund. "Oh, you know, a couple of months."

Kelvin Yates: Yes, it went like that.

Jodi-Ann Burey: It's a joke, when it comes to cancer stuff, yeah.

Kelvin Yates: Yeah, it is. Years prior, I pride myself, because with work, I have finally made it, I was living comfortably, we had just bought our house, the American dream, the house, the kids, the dog, got a savings. I can go out if I want this, I just go out and buy it. If I want to do this, I do it. Flying places, enjoying life, snorkeling... All those fun things you do, when you finally have worked hard enough, to do things you want to do. We had got to that point, just for it to all come crashing down in one day. One day. And then it's almost like it's the longest day ever. That February 9th, when I was diagnosed, I will never forget that day. That was one of the longest days of my life.

Kelvin Yates: There is only 24 hours in a day, it felt like it was straight, just never ending. You know how you have that bad day at work, you can go home, you can drink your wine, or you could have a beer, whatever you do to bring yourself down, jump in the shower, whatever it may be. And you could go to sleep and wake up, and hit the reset button. You can't do that with cancer. I couldn't do that.

Jodi-Ann Burey: And you want to, so badly. And they always tell people like, "Oh, just take it one day at a time." I'm like, "Oh, you have no idea how long a day is." That is very arrogant of you to say that to me.

Kelvin Yates: Mm-hmm (affirmative). Yeah, absolutely.

Jodi-Ann Burey: One day?

Kelvin Yates: Mm-hmm (affirmative). When is this going to end?

Jodi-Ann Burey: So another thing that's similar about us is, there's the cancer part, even though our cancers are very different. And I want to get into what multiple myeloma is exactly. But there's also the physical damage that it did to your back. And so at least for me, it was the cancer, and then the surgery created the damage to my spinal cord, gave me the spinal cord injury, and then I have all these new sets of symptoms.

Jodi-Ann Burey: For you, those things were layered. And so when you got to the hospital, are they like, "Oh we got to deal with this cancer stuff... "or, "Oh, remember all those fractured vertebraes, maybe we should handle that." How did they deal with like cancer versus back? What was the balance of that?

Kelvin Yates: You had two sets of doctors that didn't... Not really that they were pulling and tugging against each other, but it was like, "Well, I need to take care of this." And then you got the other one was like, "Well, this is more important, with the back is going, this is long-term damage that he could be dealing with." The cancer doctor's going "This will create more damage, if we don't treat it." It was kind of like a tug of war.

Kelvin Yates: The cancer was actually on my vertebraes, so they had to figure out, okay. So, then, you have the radiologist oncology, in a mix of cancer doctor, the hematology doctor, and then you have the bone doctor. So, you got three doctors in the mix now because, "We got to figure out how to hit these cancer spots that are all on his back." I mean, it was all over my body. Myeloma was all over. I had lesions, they were on my head, they were on my arms, back. "We got to figure out how to shrink those tumors on his back, without disrupting that spinal cord." So you got all that going on, and then you got, Well, we need to get him down for MRI." And they're like, Well, we can't move him." It's like, "Okay."

Jodi-Ann Burey: Can we all have this conversation outside, please. Thank you [laughter].

Kelvin Yates: Yes, right? I've got four doctors in there, and once again, I'm alone, because my wife still got to get my daughter out and off to school. So it's not like she could be there when the doctors come in, 6:00, 7:00, in the morning. And I've kind of got a tug of war going on, at the foot of my bed, on, "How we get this patient stabilized enough, so everybody can do what they need to do." But also, what I didn't know, it takes like 10 days for a myeloma panel to come back. So they had a myeloma diagnosis, but it wasn't confirmed medically. But they don't tell you that in a... I mean, all they had to do was say that, and I would have been like, "Okay, well we have to wait at least 10 days." You know, the doctor's got to a point to where, he would come down, and sit down and watch TV with me, I'm like-

Jodi-Ann Burey: We're not hanging out, bro. Like, you're cool but no [laughter].

Kelvin Yates: Like, don't you got something you need to be doing? And I told my wife that, and she like "How about, when is he going home?"

Jodi-Ann Burey: Oh my gosh, I remember like trying to get... I wanted to get discharged so bad. One time I would have these massive kind of blow-ups... Talking about like elevating your temperature as a black woman. I'd have my family come in, and pack up my whole room, and I'm like, "I'm getting discharged today." Like "I just said it." [laughter] And they're like, "No, you're not." There are a couple of times I was like, "I'm leaving today." They packed up all my stuff, and I'm like, "All right, I'm ready." And they're like, "Jodi-Ann, you're not" [laughter].

Kelvin Yates: Yeah. Here, we get into this mindset, we're in a hospital because our bodies have got to a point to non-functionality, and we're going to tell somebody what we're going to do, right? I look back on, and I'm like, "How can I sit here and tell them, don't touch me, just leave me alone." But they're the same ones that's helping me, and I'm like, 'roar' [laughter].

Jodi-Ann Burey: And legit, I don't know what it was like for you, but the whole time I was there, I was in my first hospital for 10 days. And then I went to inpatient rehab. I love saying that, when I was in rehab, it was like my favorite thing [laughter]. Before I got to rehab, like I wasn't even able to go to bathroom on my own, but I'm trying to get discharged. You know?

Kelvin Yates: Right.

Jodi-Ann Burey: There was no time that I was there, that I could just get out of bed, and get to the bathroom by myself. My balance was so bad, because I remember I was like having my little moment of defiance. And this is so dumb, I wasn't allowed to flush the toilet by myself, someone always had to do it for me, which... I don't want to say, is it demoralizing?

Kelvin Yates: Yeah.

Jodi-Ann Burey: But when you can't do simple tasks as an adult, I just was losing a sense of ownership. And so when I think about household toilets are like, that takes a lot of balance and coordination, to bend over and on one side apply pressure.

Kelvin Yates: Yes.

Jodi-Ann Burey: The hospital ones, it's like at eye level.

Kelvin Yates: Yeah, they raise it up for you, mm-hmm (affirmative).

Jodi-Ann Burey: So, I slam down to flush it on my own, and I almost fall. And the nurse had to catch me and hold me up. And she's like, "Why did you do that?" And in my mind, I'm like, "Why did you do that?" [laughter] Thank you so much Ebony, for asking me that question. That is a good question. I don't know. I'm just trying to like clean myself. So I'm curious for you, I have a couple of instances where I just lost it. Mental health-wise, was there a moment where you were just like, "I'm done."

Kelvin Yates: I had several, my first one, going into week two. We got to start getting measurements for my back brace, and the guy comes in and he's from... So I come from whatever medical, I'm here to fit you for your back brace. So I had a rough night, didn't sleep very well. Kind of toss and turn. Once again, I had one of those nights where the mind was just racing, and I finally get to sleep, and he comes in at 8:00 in the morning, and he's like, "Is it okay if we, you know, measure you up?" I was like, "You know what, fine, it is what it is, so." I don't know whether it was the sound of the tape measure that he was using, triggered me or what? But I just like, "Just stop, just don't touch me." Then, I just broke out crying. I just laid there in bed, just in tears crying. He's like, "I can come back." I'm like, "No, I just need a minute, just give me a second."

Kelvin Yates: And looking back on it, I think it was just the sound of the measurements, little tape measure. And I think it just took me back to being out in my shop, or being out working on something, knowing that, I... Right now, he's measuring me for back brace, I may never be able to do that again. And it just triggered me, and I just broke down. My mental mind just broke down and I... After that point, I realized that, that was I guess, my rock bottom for this whole cancer thing where I realized that, it was time for me to pull together, and go at it, to just fight this thing.

Kelvin Yates: I was like, because I knew I was stronger than it. I knew I had a support system to look forward to. I think that just had that moment to where I just had to just let it out. Just sometimes, you just need something, someone, or a situation to bring something out of you. And I think that's what that moment did. It just brought out that anger, and that frustration that I've had building up, after that, I was like, "Let's do it, come on." Wiped the tears from my eye, put it together, come on. And from there, I knew I was ready for a fight, and I was like, "Let's go."

Jodi-Ann Burey: No, I hear that. I hear that so hard. Yeah, I had a similar situation, and you go there. And then my sister had a wheelchair for me, and there was like a prayer-meditation room or whatever, in the hospital. And we just sat there, and I was like-

Jodi-Ann Burey: ... I was like, "Come on, JB. We got this, pull it together."

Kelvin Yates: Yes.

Jodi-Ann Burey: I don't know, you approach it with different eyes and I think a different level of energy, but I think that's a really good point around looking around you and seeing that you have the tools that you need. You have a family, you have the support, you have what you need to move forward. So I want to dig into multiple myeloma. At what point in this process did you even really understand what it was? And then another level, of how prevalent it is in the black community.

Kelvin Yates: Right. So, well, even all the days in the hospital didn't get the breakdown of actually what it is. I knew that it was attacking my body, it was breaking my bones, it had destroyed my back, it was destroying my hip. Both hips as a matter of fact, one which has been replaced. It wasn't until I got home and actually Googled it that it was like, "Oh wow." So multiple myeloma is a cancer to plasma cells, and the reason why it has the multiple thrown in front of it, because what happens is the cells continue to recreate. So even when you kill off one, you're constantly building other ones. So they basically feed off of the bone, and that's why you end up with breaks and fractures and stuff. So once I got that understanding, I was like, "Oh, that makes sense on why." Because I'm like, well, why do I have all these fractures? Is it because I hit it on something? But I'm like, what'd I do, walk up and slam my back up against a pallet or something?

Jodi-Ann Burey: [laughter] I don't know what you do in your wood shop, Kelvin. I don't want to judge, I don't know what's happening.

Kelvin Yates: Right [laughter]. I'm like, how did it get my back? Because after talking to most people, they will break an arm or break a rib, and I'm like, well, why in the heck did it attack my back? I mean, I've heard of backstabbers but I didn't think I had any backstabbers. I'm a pretty nice guy [laughter]. But at the remit, then it made sense because it goes to those weakest points. Your vertebrae is one of those weak points that it could go after. Then I started reading more statistics. It's prevalent in the black community, males ages 60 to 70 years of age is when... It's almost like having osteoporosis, but then I'm looking, I'm like, okay, I'm 40 years old. What the heck? I'm not in that bracket. Am I like a young man living in an old man's body or what? [laughter]

Jodi-Ann Burey: Yeah.

Kelvin Yates: So as I do more research and I'm finding out that not only is it more prevalent in black males, but we also have a longer life expectancy living with it. I'm like, well dang. Well, at least I know I got a fighting chance here. Then again, I'm like, it all depends on genetics too, so who knows? But I know at this point, I can actually put up a good fight against it, so that's what I went with.

Jodi-Ann Burey: So in your own research of it, did you feel like you had to start unlearning your own assumptions about cancer? Because there are certain cancers that get mainstreamed and popularized, where people ask you about tumors, or are you in, what is it? I want to say recession.

Kelvin Yates: Remission.

Jodi-Ann Burey: [laughter] That's how you know it's not my journey. Are you in remission? With my particular case, everything that I knew about cancer had nothing to do with what I had. It's just a very different ballpark. Multiple myeloma sounds so different than other cancers that we hear about and get ribbons for and have walks on and all that.

Kelvin Yates: It is, and that was the thing. It was like I'd never heard of it. When you mention it, people are like, melanoma? No. It's multiple myeloma, okay? And that's the thing, nobody knows about it, and why not is what I was asking myself. Well, why don't more people know about this? And especially after I was reading. There was a few athletes that have it, Tom Brokaw has it. There are some really big name people who have it, but where's the advocacy for it? Who's talking about it? And then once I found out it's in the black community, it's like, all right, well, why aren't we talking about it in our community? Why don't we know about multiple myeloma? This is a cancer, we need to take it seriously. I'm thinking to myself, okay, so what do I do? What can I do to bring awareness to this thing?

Kelvin Yates: But yeah, even talking to people about multiple myeloma, they're like, well, what kind of cancer is it? I was like, well, it's cancer to plasma cells. And basically, it eats away at your bones. You break bones, you have to be very careful what you do now. Even in my shop, I have to be careful because I can bang my arm and a week later, next thing you know, my arm is fractured. So I do a bone strengthener, which I've been doing for about five years now. But even with that, I have to be careful because now, it strengthens my bones, but now they're too strong and they can cause breakage from that. So, you know-

Jodi-Ann Burey: Damned if you do, damned if you don't.

Kelvin Yates: Damned if you don't, right. I'm like, what the heck? Why? It leads me back to that why question.

Jodi-Ann Burey: Yeah, and that's why I like this podcast, to give people space to talk about the intricacies of what they're experiencing, because it's so different and there's not a lot out, there's not a lot of advocacy and not a lot of stories out there. What I struggled with in my situation is, people know about folks who have spinal cord injuries, right? Christopher Reeves and all this stuff, but normally, when people think about spinal cord injuries, it's from an acute trauma. Car accident, whatever, whatever.

Kelvin Yates: Yes.

Jodi-Ann Burey: Not spinal cord injuries that come as a result of a tumor resection because you had a tumor growing inside of you. There are other ways that people get spinal cord injuries, and so I felt so alone and isolated, trying to map on this physical disability onto when your body creates things that hurt you. There's this whole balance.

Jodi-Ann Burey: In preparing for this, the TV was playing, there was some commercial about a ALS drug. First of all, the fact that in the US, we advertise pharmaceutical drugs on television is absolutely ridiculous. It's not normal, and if the only call to action is ask your doctor about it, that's bad [laughter]. I can't get it. And so I'm seeing this full 30 second ad on television for ALS, which is so specific. And so I Googled it. They said that there are only 5,000 cases of new diagnoses of ALS in the US every year.

Jodi-Ann Burey: And so what I'm not saying is that if it doesn't happen to a lot of people, it's not important. That is not what I'm saying, but I'm trying to put everything in context and with some nuance. There are 5,000 new cases, there was a lot of advocacy around it because they did the ice bucket challenge or whatever. It always, quote unquote, helps your cause when a famous person has that illness, where they can put resources and attention towards something. I looked at multiple myeloma and there are 35,000 new cases of multiple myeloma every year. So as an advocate, and we'll get more into your advocacy work around this, and someone who's living with this condition, what's your take on what gets attention, what doesn't get attention and how that process happens?

Kelvin Yates: It's kind of sad, and I say that because it's almost like, does it not get the attention because the demographic of people it affects? Or does it not get attention because it's grouped into a blood cancer? And such a wide range of blood cancers. So for me, it almost feels like it doesn't get the attention more so because of demographic of the people it affects. There's clinical trials. I knew nothing about clinical trials up until maybe two years ago. I didn't even know I would be eligible for clinical trials. If you have two failures of medication, that qualifies you for it. But you know what? Doctor never once said, "Hey, do you want to try a clinical trial?" Why not? There's definitely more to be done that needs to be done as far as bringing it out. Especially just like you said, look at the amount of cases. Why don't people know what this is? The pharmaceutical companies spend all this money to get these commercials. Why can't we figure out a way to get a commercial about the different types of cancers?

Kelvin Yates: We are so scared of cancer and there is no reason to be. If we stop being scared of it and take it head on like you, like myself, I can name a host of other people who take it head on, every day, take that challenge of fighting cancer. If we as a country or mainstream media or whatever take on cancer head on and bring commercials out so people know what to look for, know what to listen for, it wouldn't be what it is to where people find out about it and they go, "My life's over." They will know that everybody has a fighting chance with cancer. It just has to be a point to where we have to stop being scared of it and take it head on. And until we do that, it'll continue to be the stigma that nobody wants to talk about. "Oh my gosh, don't say cancer in front of her."

Jodi-Ann Burey: Yes, or use the C word or this person's sick, or you don't want to look too much into it, but looking into it and taking it head on and taking ownership of it can open up options for you and resources.

Kelvin Yates: Yes.

Jodi-Ann Burey: And so as we talk about things that get popularized, and I know a lot about ALS and random illnesses or conditions because it's just kind of in the air, right?

Kelvin Yates: Right.

Jodi-Ann Burey: But there's a bunch of stuff, it's like an iceberg. The more I talk to people, like, wait, that's possible? Like, wait, they do that? Like, wait what? And then I go back and my experience is like, wait, was I missing something? Should somebody have been paying for something for me that I was definitely paying for? Or what resources I could have access to, and so I'm curious, was it that head-on mentality that got you connected to the Leukemia Lymphoma Society? How did you get connected with LLS?

Kelvin Yates: It was wild because being at home, I didn't want nobody to see me with a walker so I didn't go out.

Jodi-Ann Burey: That internalized ableism is so real. When they rolled out my walker, I was like, "Come on, I'm 32." And they're like, "Come on, you can't walk." I'm like, "You right. You right. You right" [laughter].

Kelvin Yates: Trust me, we battled, because I'm like, "I am not using that things." So, you know, and I'll get back to your question, just-

Jodi-Ann Burey: Yeah, yeah, yeah. Quick detour to the walker [laughter].

Kelvin Yates: Yeah, because these physical therapists, they know what they're doing. So they're like, "All right, you know what? Well, we'll take this out of the equation." So they put the little strap around your waist and they're like, "All right, come on, stand up." And meanwhile, they, "Well, I'm going to hold this just so that you're okay." And I'm like, "Well, I'm not using that thing. I don't need it." So you get to walking and next thing you know, you hear, click, click. "Come on, just try it." So then here I am standing behind this thing and I'm like, "No, I'm not doing this. I'm not. I will figure it out. I'm not doing this."

Jodi-Ann Burey: You're so stubborn. Where is your wife?

Kelvin Yates: [laughter] Right. I hate this thing. But those things that we are not accustomed to and we feel like we don't need, we have to break down that barrier and accept, it is what it is, and use the walker. I knew I needed it because it was either get behind this thing or you hit the ground, because the bed's over there and you're standing right here right now, so let's figure out what you want to do [laughter]. And if you hit the floor, it's going to be more damage than what you already got going on. Now, do you want that? I'm like, "No, I don't want that. Okay."

Jodi-Ann Burey: You've got to be threatened into using the thing that's supposed to help you.

Kelvin Yates: Yes. Yes. It's crazy, isn't it?

Jodi-Ann Burey: I've been there. How'd you find out about LLS? You said you were home because you didn't want to go anywhere because you had the walker.

Kelvin Yates: Yeah, the walker. So I'm laying in bed and a commercial comes on. They do a light the night walk every year.

Jodi-Ann Burey: Light the night?

Kelvin Yates: Yeah, it's called Light the Night, and basically, what we do is they light up the night, so everybody comes out. And there's one in just about every city. I realized a couple of years back that there actually isn't every city yet, but we're getting there. And so they had a commercial, come down, nation's capital, light the night with us and we'll walk to cure blood cancer. And I'm like, wow, that would be pretty cool to do. Gave them a call, what can I do? Because it's March, the walk wasn't until October.

Jodi-Ann Burey: So you had some time.

Kelvin Yates: So I had some time.

Jodi-Ann Burey: You're like people that train for a marathon. You're like, yo, I'm about to light the night.

Kelvin Yates: [laughter] Yeah, I'm training to walk.

Jodi-Ann Burey: No, but that's real. I've been there [laughter].

Kelvin Yates: Yeah, right? It's like, this is what I got looked forward to, you know? I'm excited about this. So I started doing a little fundraiser, people at work was like, "Oh, we'd love to donate. We'd love to come out and do it." So-

Jodi-Ann Burey: That's so cool.

Kelvin Yates: Yeah, so everybody always says they're going to come out, but I tell you what, the people that meant the most to me were there, which is family. The first year I did it, our team, it was probably 15 of us. It was funny because I'm flipping through my pictures and I'm like, I remember this night. We had a blast. I mean, they had live music, they had vendors and stuff out there. So it's October and I'm ready, and I've built myself up and it just so happened that getting up to that point, I had met some people along the way that heard about my story and what I had been through. And LLS was like, "Well, we got a local news station that wants you and your family to come on, we want to do a quick commercial." So my commercial's on TV, so now, not only am I battling cancer but I found a positive side to it. I got to be like the local superstar, you know? [laughter]

Jodi-Ann Burey: [laughter] I want to be famous but not like this, but I'll take what I could get.

Kelvin Yates: Yeah, exactly, right? I'm like, dang, well, if this is what it takes, well, I can do it. But yeah, so I got my team together and we all came out. Like I said, there was about 15 of us. The most shocking thing was my manager, him and his son came out and he was the one that I told you that said, "Instead of saying, why me, flip it around and say, try me." When he showed up and came out to walk, that was like real deal. You know your family is going to come out, everybody came down for support. But when you have your boss, your manager that comes down in support of you, it is-

Jodi-Ann Burey: That means something.

Kelvin Yates: It means something. Yep, first-class.

Jodi-Ann Burey: You know, not everybody can draw something from their experience, even for themselves, much less draw from their own experience to give to other people.

Kelvin Yates: Right.

Jodi-Ann Burey: What motivated you to turn your own cancer journey, even as you're still managing it, into something more than that?

Kelvin Yates: Because I felt like there was a reason that this happened to me, there's a purpose. And I've felt like with everything that happened to me and I was able to come back, get back to work full term. Yeah, I have my struggles with everything that's going on. I just felt like there was a purpose for me, and my purpose was to reach as many people as I can to talk about this disease, whether it be helping them newly diagnose, whether it be diagnosed and don't know which way to turn. Because for whatever reason, the information just kept coming to me about it, whether it be the medications on the market during the transplant, but it seemed like everything was coming easy. As I went along, it got easier and easier.

Kelvin Yates: And I'm like, why? Maybe the reason is because I need to be advocating for people who can't. One thing I find, when you talk to people, when they're assigned a doctor, a cancer doctor, they feel like they can't go anywhere else. The doctor you got, you have to stay with him until you die. You don't. You have options. The doctors work for you. Now, whether or not you want to stay with him, that's completely up to you. I always thought that too. I thought the very... Because I had to get rid of my first cancer doctor because I just didn't feel like, as we got further along in the process, he didn't have my best interests. So I moved on. People have to realize that you're not tied to just one doctor. Ask your doctor, ask questions. Nobody's going to tell you that information.

Kelvin Yates: I felt like the cancer world needed somebody who's going to give them information firsthand of somebody that went through it. I know the things I should have did and what I didn't do, which obviously I can't go back, but you know what? I can tell somebody now, "Look, you know what? Switch doctors if you're not comfortable with that doctor." There are different companies out there that's looking to help you with medication costs. You got LLS who can help counsel you if you need help understanding the drugs you're taking. In the Virginia area, we've got the Life With Cancer Center. They have all these counseling programs, they have yoga, they have massage. They're geared toward people with cancer so that the nurses, massage therapists are strictly trained for that. It's just the advocacy side of it, really just being able to help somebody who can't help themselves or don't know where to go to help themselves.

Kelvin Yates: And I talked to more and more people who just don't know. They're fresh out of hospital, don't know which way to turn, don't have any information when they're battling this. So to be able to offer that to them, for me, that's kind of my healing. Offering that to them helps me heal.

Jodi-Ann Burey: Do you feel like those experiences change or continue to change the way you see yourself?

Kelvin Yates: It does. It does. Mentally, I continue to get stronger through this process because I know that I continue to battle and go at this, but the physical aspect of it, I continue to strengthen every day I like to look at it, because every day is a different battle physically. Mentally, I'm on it. I've crushed him into, but the physical aspect of it, it's a fight, but it's a fight that I enjoy taking on because I know that there's probably somebody else who either needs to see what I'm doing or knows what I'm going through, and they're like, "Wow, this guy's killing it every day." So physically, I always like to show people that, you know what? I don't have any limitations. I'm living day to day, so whatever your situation may be, you can overcome it. You know? So I feel like that as I go along and people know my background and what I've been through, that, wow, if he can do it, that should be my strength and my encouragement to move forward with whatever I have going on.

Jodi-Ann Burey: It's like, even as people can be inspired by your story, and I'm going to ask you this question but I know the answer for me for this question is no [laughter]. But I'm curious what your answer is. I think you've got the mental game a little bit tighter than me.

Kelvin Yates: Okay. Okay.

Jodi-Ann Burey: I'm still in therapy. I'll always be [inaudible 01:10:14] [laughter]. But the question for you is do you feel inspired by your own story?

Kelvin Yates: And I will say, yes. There's a story I did on Fox 5 BC several years back. I hadn't watched it in its entirety but I watched it probably a year after I did it. And I'm like, "Wow, that guy talking on TV is really inspiring." And it wasn't that... I didn't see myself. I saw a gentlemen on TV telling his story about how he made it through, everything he had been through, was still able to stand up, walk out there and do that interview. And from time to time, I do look at that. When things get rough, two weeks ago, one of the procedures, they told me my T-10 is getting worse. And I'm like, wow, what does this mean?

Kelvin Yates: But you know what? I do this thing where I stand in the mirror and reflect on where I've come from and where I plan to be at, and I'll go back to that person I saw that day talking to thousands of people, I'm sure maybe even millions of people, in the Washington Metropolitan area, so boldly saying, "I beat cancer." I mean, I didn't see myself there. I saw Kelvin Yates there telling people with boldness, not even with a inner fear, just boldness, saying, "After all I've been through and I can still do this. I can still get in my shop. I can still cut the grass," was so inspiring to me because...

Kelvin Yates: ...like I said I didn't see myself I saw Kelvin Yates there in it. I get inspired by seeing myself situational. Talk to me. Talk to me. Talk to me. I want to hear it. Talk to me.

Jodi-Ann Burey: [sigh] In that mindset when you dissociate, I have seen that.

Kelvin Yates: Mm-hmm (affirmative).

Jodi-Ann Burey: But one thing my therapist keeps saying is like, "You are that person."

Kelvin Yates: Mm-hmm (affirmative).

Jodi-Ann Burey: And I can't put those people together. I still struggle with that.

Kelvin Yates: Yeah.

Jodi-Ann Burey: I watch videos of myself from when I was trying to learn how to walk and ways that I was struggling with my hands. I took all these videos almost to try to prove to a future self, Jodi-Ann this happened to you.

Kelvin Yates: Mm-hmm (affirmative).

Jodi-Ann Burey: And I watch these videos and I read things that I was writing. I put in quotations because I couldn't use my hands, so I would use speech-to-text on my phone. That's how I wrote essays and journaled during that time.

Kelvin Yates: Yeah.

Jodi-Ann Burey: I read these things and I'm like, "Oh my God, that person really went through it."

Kelvin Yates: Mm-hmm (affirmative).

Jodi-Ann Burey: And even when "successful things" happen to me like when I see myself on stage with Stacey Abrams or I see myself walking around this little red carpet for the TED Talk, I see what I'm doing but I also... When I was on stage of Stacey Abrams my feet were so cold. And I remember the night before I was arguing with the stage manager because he didn't put railings on the side of the stage because it didn't look right. And I said, "It didn't look right? I'm literally standing here talking to you." I had a cane because I'd been on my feet the whole day and we had someone who was coming on stage who was eight months pregnant, I don't care what it looks like put a railing. And so then I was nervous when I was going to leave the stage with Stacey Abrams like, "Oh is it too cold in here? Am I going to trip?"

Kelvin Yates: Yeah.

Jodi-Ann Burey: Or when I see myself on a TED Talk stage I remember having a back and forth with the organizers because I wanted to test the shoes that I had on a carpet and they wouldn't let me into the theater before. I bought all these shoes online and I was trying to practice in the shoes because I hadn't worn heels since my surgery and they had to be constructed in a particular way to stay on my feet. I had to practice walking in them. So even though the heels that I wore for the TED Talk, I actually can't walk in them. I can only step step, step step, on the stage.

Jodi-Ann Burey: But as soon as they shut the cameras off, I had to get out of them right away and I had other shoes on stage. When I see myself struggling from back when I was in the hospital I see, like you saying, I see Jodi-Ann and I see this other person. And then even when things are great I see the internal struggle with my physical disability and ways that my body was hurting. And I don't look at myself, "Oh my gosh, look how far I've come. Look at this person who's just walking with confidence" and dah, dah, dah, dah and you were just... I can't connect those people yet.

Kelvin Yates: Oh, wow.

Jodi-Ann Burey: Even though I feel inspired by the story of what happened I don't feel inspired by myself. It's hard for me to see my own path as much as I want to, because I'm still stuck resenting the fact that I had to overcome it.

Kelvin Yates: Right. Okay.

Jodi-Ann Burey: I'm so occupied with managing my pain that even I don't notice that the level of pain that I have now isn't actually the same level of pain that I had a year ago. Because what my goal is is no pain which with the level of knowledge that I have right now of what's open for me that will never change, I will always be in pain. And I don't want to feel inspired by my story until I feel a hundred percent okay with where I'm at and I'm not there.

Kelvin Yates: Right.

Jodi-Ann Burey: I don't feel like I'm there in the way that I feel like you're there. I'm projecting on where you are, right?

Kelvin Yates: Right.

Jodi-Ann Burey: Like when we had talked about you gardening and finding all these things and like, "Okay, maybe I can't be in my shop for eight hours but I can do it for a couple of hours." With me it's like, "I can't go snowboarding seven hours a day but I can go for an hour or two." And I'm still not all the way okay with that.

Kelvin Yates: Right.

Jodi-Ann Burey: So I don't want to be inspired by my story because I'm not standing on the mountain top yet I'm still on a path. But there is no mountain top because I'll never not be in pain. Aah! [laughter]

Kelvin Yates: So then my question to you is this, do you think that your goal setting might be a little too high?

Jodi-Ann Burey: Absolutely [laughter]. I'm fully aware that I'm trying to get to a place that probably is impossible for me.

Kelvin Yates: Mm-hmm (affirmative). Well, never say it's impossible.

Jodi-Ann Burey: That is true, you never know.

Kelvin Yates: Because yeah, you never know. So you can never say impossible. But maybe what you do is bring that level of goal setting down one notch. Or maybe break it down into several sections and accomplish different steps of it to where you can start saying, "Hey, you know what? I did do this."

Jodi-Ann Burey: Yeah. I think that's the management part that becomes so burdensome, right?

Kelvin Yates: Yeah.

Jodi-Ann Burey: Like do you ever get tired of that or are you just?

Kelvin Yates: From time to time, yes it does get tiresome. And just like I have to do that. Sometimes I have to get back to being a realist that, you know what? Today just ain't going to be that superstar day, tomorrow may not be that superstar, even the day after tomorrow might not be that superstar day. But you know what? When I do hit that day that I'm hitting on all points and all cylinders, oh man. You know what? I take that for... [laughter]. I will wear it out [laughter].

Jodi-Ann Burey: Yeah. No, I love that. Bringing awareness to those really good days.

Kelvin Yates: Yes. I will wear it out. I mean like pshhh. And don't let it be my day off.

Jodi-Ann Burey: Uff!

Kelvin Yates: [laughter] Whoa!

Jodi-Ann Burey: Can't stop me.

Kelvin Yates: Can't stop, won't stop. Get out the way beep, beep because I'm coming through.

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

Kelvin Yates: Yes. So, yeah. But I think in your case you should chop it down just a little bit. Maybe just a little bite out of it and then look at it from that perspective.

Jodi-Ann Burey: Yeah.

Kelvin Yates: Yeah.

Jodi-Ann Burey: Is that how you support other folks through your work with LLS for people who are navigating new diagnoses for multiple myeloma? Like that type of support?

Kelvin Yates: Yeah. Because not everybody can take things in big doses, so sometimes it has to be a step by step case. Whether it be, you know what? Okay. Now I've got the back thing under control let me look at the cancer part of it. So how can I take on this part of what I'm dealing with? Do I need to say, "Okay. Well, three times a week I'm going to focus two hours on self-healing. Monday, Wednesday, and Friday. And then maybe Tuesday and Thursday would just be a day I don't even deal with it at all." Because one day in between is not going to hurt. You know what I mean?

Jodi-Ann Burey: Yeah.

Kelvin Yates: And the same thing we're dealing with whether it be the healing part of the injury or whatever sustained from the cancer. Maybe you know what? The following week you do that on just Tuesday and Thursday and then you know what? The cancer thing I'm not going to deal with this week. Tuesday and Thursday I'm going to deal with this injury and that gives me three days of just straight not dealing with back pain, I mean not dealing with the cancer thing. It's like taking time off from it. The medication number one is 21 days on seven days off. And it's only one medication that I'm not taking, but those seven days off I love it. I mean that's like I look forward to those. And it's not like I don't have to take medication at all but just knowing that one medication I don't have to take is like, "Man." If it falls on a week when I'm on vacation-

Jodi-Ann Burey: oh, yeah.

Kelvin Yates: ... That is like, "Wow,-"

Jodi-Ann Burey: You're unstoppable.

Kelvin Yates: ... "I got it." Yeah [laughter]. Like I'm on top of the world. This week don't have medication to take and I'm on vacation, oh get it, so.

Jodi-Ann Burey: That's how I feel about summer. I was like, "Uff, it's hot now. I'm going to do it, no. Oh yeah, it's on. It's on."

Kelvin Yates: [laughter] Yeah.

Jodi-Ann Burey: And I assume it September roll around I'm like, "Urgh! Should I move?" [laughter]

Kelvin Yates: [laughter] Oh, back to this again.

Jodi-Ann Burey: Someone who's listening to this who's navigating exactly what you're navigating, what would you want to share with them?

Kelvin Yates: One positive thing can go a long way. There's a positivity in everything regardless, in our case, the day we actually stepped out of bed and was able to walk across the room. So find that one positive thing and build off of it. And build off it. And understand that there are going to be bad days, they're going to be good days, they're going to be great days but find the positivity in whatever it is you need for that day to get you through that day.

Jodi-Ann Burey: Yeah. No, I hear that. And I found so many people they were like, "Stay positive. Stay positive." I just feel like my default is just bitterness [laughter].

Kelvin Yates: Come on [laughter].

Jodi-Ann Burey: I was just like, "I Stay positive. Stay positive." I think for me what I translate the positive into is like what is the wisdom? And what do I know about myself? And how can I use that as my core? Because for me it's like, "Oh, you can't tell me anything about stress management or how to handle crises or whatever. I was like, "I got that on lock." Because when I look back on my own experience I was like, "Here are all the ways, you really handle this." And when you talk about go at it, stay on top of it, take charge of it any time there's a crisis happening in my life or in my friend's life and I'm like, "I got this." So when COVID hit I was like, "I have been prepared for this the whole time. Oh, are you in the unprecedented situation that is upending your entire life? Please. I did that two years ago" [laughter].

Kelvin Yates: Right. That's why people are like, "How'd you get through COVID?" "What? Do you not realize I was at home a year and a half?" I was all COVID, I would preach COVID [laughter].

Jodi-Ann Burey: Yes. Like, "You know I've been this, I'm actually over this."

Kelvin Yates: Yeah, exactly. This is no problem.

Jodi-Ann Burey: Yeah.

Kelvin Yates: Yeah. When I finally got out people are like, "You were at home for a year? I was like, "Yeah." They were like, "And you were okay?" I was like, "Yep. I did it five years ago."

Jodi-Ann Burey: Yeah. It was like, "I ain't new to this."

Kelvin Yates: Yeah, exactly. I said, "Try being at home and being bedridden."

Jodi-Ann Burey: Exactly.

Kelvin Yates: At least you can walk through the house and-

Jodi-Ann Burey: Thank you.

Kelvin Yates: ... Go in the back yard and do this and do that. I said, "I was at home for a year and a half, bedridden a year, and then six months had to walk with a walker so talk to me."

Jodi-Ann Burey: When I got laid off I was just like, "Oh, I'm not working and I could walk. What?"

Kelvin Yates: Yeah.

Jodi-Ann Burey: It's one thing to like, "Oh, you're not at work but you're in the hospital." Or you're like, "Oh, you're not at work but you're seriously navigating this new thing." I was like, "Oh, I don't have to go to work and I could just-"

Kelvin Yates: Right. Mm-hmm (affirmative).

Jodi-Ann Burey: ... "Do whatever." I could drive, this is cool.

Kelvin Yates: Mm-hmm (affirmative) Yeah, exactly. Like no limitations but just I can't be around people. Money.

Jodi-Ann Burey: Yeah. Got it. I could control temperature in my own living space, that's amazing.

Kelvin Yates: Yeah [laughter].

Jodi-Ann Burey: So I was like, "Yeah. Come on COVID, let's go. Bring it."

Kelvin Yates: Bring it, I'm ready.

Jodi-Ann Burey: And I see people crumbling around me really unable to manage the disruption in their lives. And I just feel so confident that I was able to navigate this the way that I did. And I'm actually a little anxious about going back, I don't know. The last time before COVID hit I wasn't in a good mental space. And COVID freed me up because I didn't have to worry about performing okayness all the time. And so I wonder what this version of my journey's going to be going back out into the world now that I'm vaccinated and things are changing a little bit. And just reintroducing myself to the world with a different mindset and a different version of who I am.

Kelvin Yates: All you got to do just remember break it down into baby steps.

Jodi-Ann Burey: [laughter] Thanks for the therapy, Kelvin.

Kelvin Yates: Yes. Don't take it on all at once, break it down. You got to break it.

Jodi-Ann Burey: But it's summer time, I'm unstoppable [laughter].

Kelvin Yates: [laughter] Right? I feel you though. I feel you. I feel you on that one. Because today, tomorrow, you know what? I'm going fishing for the first time in four years. I am still...

Jodi-Ann Burey: I'm so excited for you.

Kelvin Yates: Once again it's one of those things you take for granted being able to just [swish sound]. I mean just sitting out me and a buddy of mine from work and going it's like, "What more could you ask for, right?"

Jodi-Ann Burey: Yeah.

Kelvin Yates: It's simple things that some might probably go out and do every other day when they get off work, and here I am like this is big. Even if I don't catch a fish I've accomplished getting out there and being able to do it, so I'm pretty excited about that. But yeah. So like I said it's just the little things. You find that little thing in the midst of all these big things we have going on. If more people just find that one little thing that they can build off of for that one day, don't worry about tomorrow we'll get to tomorrow, but just that one thing is the world would be a better place every day.

Jodi-Ann Burey: What's your next steps around your advocacy journey? Where do you want to keep going with this?

Kelvin Yates: I mean my goal is we got to figure out this medication thing, the cost of medication. And you know what? Like you have mentioned earlier it's crazy how all these commercials about this type of medicine for this, this type of medicine for that let's stop putting the money in the commercials and let's start putting it in a patient's medications and in supporting the patients. And then we need the government to jump in too because now prime example, I called to get my medication last week and a lady goes through gives me the cost and everything and I'm like, "Well, that ain't going to work for me."

Kelvin Yates: She's like, "Well on June 1st your assistance, your medication assistant, kicks in." I was like, "Well then call me back on June 1st." But why do I have to wait until June 1st to get that? Why can't we figure out a way to get it to me now? Because I need it now. Luckily I have a backup but I need it now. But not everybody has the backup I have or not everybody thinks, okay, well you know what? I got sick and I wasn't able to take four days of medication, so let me put that away. So, in that transition of whether it be the first of the year where you got to get all these approvals then I got that coverage, but not everybody thinks like that.

Jodi-Ann Burey: Or has the ability to manage all the work that it takes to manage medications and health insurance and support from organizations. I didn't even know organizations helped pay for medications.

Kelvin Yates: Yes. Mm-hmm (affirmative).

Jodi-Ann Burey: But that's still a lot to navigate and get all your paperwork together and whatever. You need an assistant for that [laughter].

Kelvin Yates: Right. Because it is. It's hours. I'm off on Tuesdays. If I'm on a Tuesday first of the month I'm on a phone all day trying to... At the first of the year I'm navigating trying to call around and figure out who can do this, call the doctor's office and find out what assistance they have. So I have to put together three or four different organizations. Why can't we have one kitty pot where that money goes and then you call them up and give them whatever information they need? But instead I got to call this doctor, call this office, call this organization and then put everything together.

Kelvin Yates: Okay. You're going to pick it up from January 1st through June due May 31st, right? And then you got it from June 1st. And not everybody can navigate that or put that together. That's my next thing with advocacy is figuring out how either the government as a whole can work with these organizations to go, "Okay. Here's the one pot that a person needs to call and put together to get their medication paid for or get the help they need." And then be done with it. So, yeah.

Jodi-Ann Burey: And for a lot of these medications, I mean this isn't my situation but I've talked to people, it's like thousands of dollars.

Kelvin Yates: Mm-hmm (affirmative). Yep. We're talking...

Jodi-Ann Burey: What are you dealing with right now?

Kelvin Yates: Mm-hmm (affirmative). Yeah. I'm thinking over a hundred thousand a year in medication cost for me. Because one of the medication I have is new. Something new on the market is it's always going to be a markup on it. Oh my gosh. We got to pay all the people that put all the time in. I get it, pay those people but-

Jodi-Ann Burey: Then you pay them but like not me [laughter].

Kelvin Yates: Yeah [laughter]. "Not me. Not me. Give me that $3 per day."

Jodi-Ann Burey: ... Yes.

Kelvin Yates: But when you call me up and like "Your copay is $1,500." I'm like, "Well $1,500 you need to hold on to that medication." But, yeah. We got to figure that out. I mean nobody needs that kind of shell shock, and not with everything else they have going on. How do you expect somebody to be able to stay healthy, live healthy and they can't afford the medication?

Jodi-Ann Burey: Yeah.

Kelvin Yates: They're fighting a losing battle. They're going to be like, "Forget it." So I always tell people, "Don't let your medication cost be the death of you.

Jodi-Ann Burey: Even though I feel like the way a lot of this stuff is organized it's just like they will let the medication cost be the death of you.

Kelvin Yates: Yes. Mm-hmm (affirmative). Yeah. And I know it's easier said than done, but yeah.

Jodi-Ann Burey: There's a lot of folks out trying to give out money.

Kelvin Yates: There are organizations that put in a little bit of work but they are out there to help. So that's why we say, "Don't let it be the death of you because there is the help you need." Yeah, it's going to take a little work to get it, which that's what my goal one day is to not have the work be so hard to get that medication. But to be able to make one call and just give all the information of your need, your first born's blood type I mean that's... But at least I'm only making one call to get that, as opposed to well I called you and I told you my whole life story now I got to call them tell them my whole life story-

Jodi-Ann Burey: Over and over.

Kelvin Yates: ... Then I got to call them. Yeah.

Jodi-Ann Burey: Representative. Representative [laughter].

Kelvin Yates: [laughter] Yeah. Exactly.

Jodi-Ann Burey: Representative.

Kelvin Yates: I press zero. Yeah. I press operator, zero. And they done change it up. They make operator number 4 now.

Jodi-Ann Burey: You got to listen to the menu, that's whack.

Kelvin Yates: [laughter] Yeah.

Jodi-Ann Burey: Representative. Representative!

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Jodi-Ann Burey: Black Cancer is created, edited, and produced by me, Jodi-Ann Burey. Thank you so much Kelvin for sharing your story with us. And stay tuned for a special feature hitting your feet later this week. Thank you to The Leukemia & Lymphoma Society for sponsoring this special series on multiple myeloma. You can learn more about LLS at lls.org/myeloma-link. To make sure that other Black Cancer stories become centered to how we talk about cancer you must like, subscribe, rate, leave a review on Apple Podcast. Find us on 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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