[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, A podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:17] Welcome to the Komen Health Equity Revolution podcast series. Each month we invite patients, community organizations, healthcare providers, researchers, and policy advocates to discuss strategies and solutions that drive the health equity revolution forward for multiple populations experiencing breast health inequities.
[00:00:35] When a loved one is diagnosed with breast cancer, the journey touches every corner of life, especially for caregivers. In honor of Black Family Cancer Awareness Week, for this powerful episode of Real Pink, we sit down with two incredible Black men of faith. Kenneth White, spiritual advisor and group facilitator for the National Addiction Treatment Center, and John K Conner of Praise is the Cure,
[00:01:00] a nonprofit focused on breast cancer awareness in the Black community, as they open up about supporting their wives through breast cancer. Through a lens of faith and cultural identity, kenneth and John reflect on what it means to show up with strength and vulnerability, how spirituality grounds their caregiving, and the importance of community,
[00:01:20] for Black families facing diagnosis. Their stories illuminate a side of breast cancer that’s often unheard, but deeply needed. So welcome, Kenneth and John, and thank you so much for joining the show today. So Kenneth, let’s start with you. We wanna hear your story about your wife’s breast cancer story and how you came to be her caregiver.
[00:01:42] And then when you finish, John, we’d like to hear the same story from you, and then I’ll let you two discuss from there.
[00:01:47] Kenneth White: Well, well, thank you very much Adam, and good afternoon, John. It’s good to see you. Good to meet you and make your acquaintance and have this platform to kind of talk about myself and my wife.
[00:02:01] So. I’m, I have a unique situation. I am married to someone who has who doesn’t have a problem talking to me about her health about her body, about how she feels about how she thinks. Now she wants to do everything on her own, but she’ll make sure that I’m informed. So one day she calls me into
[00:02:30] The bathroom as a matter it was, no, it was kind of in, in the evening after work. Okay. And she started to talk to me about her breast right and some swelling and some discoloration. And so my wife has always been concerned about that. My wife and I, we have a similar story. We both have adoption in our background, but we both know our birth
[00:02:57] families of origin. So her birth mother, her birth grandmother her birth father all died of cancer. My birth mother also died of breast cancer. So it’s something that we talked about. And I knew my wife’s concern about that. So. You know, we, you know, we talked about it and she made the appointments and my wife is a banker, so she’s a really independent person.
[00:03:27] And she comes from one of those families where everyone does everything right. We’re all strong. We don’t ask for help. We fix things. You know how it is, right, John?
[00:03:37] John Conner: I do. I do. A difficult Black family.
[00:03:40] Kenneth White: Yeah. It sounds like you have one yourself, right? That’s right. That’s right. So, so she wanted to go to the appointment by herself.
[00:03:46] Right. And so she did that. Long story short as she as she was going through it, she found out that she had intrusive ductal carcinoma. We found it really early, right? So we found it in stage one. And you know, there was a, there was just a change, right? I could see something that I really hadn’t seen in my wife in all of our years of marriage which was not concern,
[00:04:20] but fear, and I know that for myself personally, and Adam introduced me, I’m actually a therapist, so I’m a therapist and and a spiritual advisor here for a place that provides services for individuals with both mental health and substance use disorders. So you get all of these thoughts, right?
[00:04:45] You get all of these thoughts about, you know the clinical piece. What do I need to do to provide support? What should I say? What’s the right thing to say? But then also I’m also licensed and ordained and I’ve pastored a church. And so all of these things start coming in. And for a minute, John, I almost forgot that I was her husband, right?
[00:05:11] And that she just needed me to be a husband, right? That it was okay for me to give myself permission to be scared. Right. Scared. A big thing for me was figuring out how day to give myself permission to just be Renee’s husband. Right. Not her therapist, not her pastor. But just her husband.
[00:05:47] And that was a learning process for me. Just one other thing that, that I’d like to share. That was a big thing. So my wife was scheduled for her surgery on the 1st of September in 2022. So we take her in for the appointment and you know, she, and you know, our family’s there and so me and her mother and we go out to, to eat lunch and we keep getting these calls from the hospital.
[00:06:20] Mr. White, we had a little complication, but everything’s gonna be okay. Mr. White. You know, we had to call you back. You know the procedure’s gonna be a little longer than we expected, but everything’s gonna be okay. Third call Mr. White. We need you to get back over to the hospital as soon as possible.
[00:06:39] John Conner: Wow. Wow.
[00:06:40] Kenneth White: I get back to the hospital, it’s about two 30 and they tell me that during the surgery my wife stops breathing. She’s in ICU and I can’t see her until 5:30.
[00:07:02] So long story short, my wife doesn’t wake up until the next morning. She thinks that she’s had the surgery, and so now I’ve got to tell her what happened and that she also doesn’t have the surgery and the surgery’s gonna have to be rescheduled. Now the surgery’s rescheduled two weeks later on the 13th, and now I’ve got to sit with her in this fear of, I thought I was gonna have the surgery.
[00:07:33] It didn’t go, it didn’t go well. I stopped breathing. Oh my God, what if I die? So it was really a lot happening and the thing that I noticed the most John, and I’ll throw it to you.
[00:07:57] Out of all of our family and friends. I only had one person to ask me how was I doing?
[00:08:09] Ken, did you eat today? Yeah. Have you been drinking water? So I think that this kind of new vulnerable space that we’re talking about, where we’re talking about being able to communicate and figure out how it is to be male and husband and supporter and caregiver with our backgrounds as ministers is something that’s an important conversation,
[00:08:40] so I’ll stop right there.
[00:08:42] John Conner: Well, Ken I really appreciate you opening up and sharing with me. I’ve learned over time that when you sit still for a minute and you listen to people tell their stories… how similar their experiences are, you know, to mine. My journey with dealing with breast cancer is, it’s been long.
[00:09:09] My wife was initially diagnosed with advanced stage of breast cancer back in 1998. That time we were in our early forties. And I never will forget the phone call that came in. My wife answered the phone in another room. I’m rushing to try to get ready for work. We’re both trying to get out the door, got the kids out and taking care of the dog and, you know she comes into the bedroom and she says that was the doctor.
[00:09:43] And the doctors told me that I have breast cancer
[00:09:49] and that I need to get in there tomorrow for them to begin diagnosing how bad the breast cancer is. And from there we went and she began her treatments again. This was back in, in 1998. And at the time we had two children. I had a daughter, older daughter, and I had a younger son.
[00:10:19] My daughter was actually I believe maybe a freshman in college and I had a son who had just started high school. So my wife went and she started her treatments. And just to give you a little history 10 years later when my wife was in remission, almost 10 years to today, my daughter called us and told us that she had been diagnosed with breast cancer. And it brought back a lot of memories. I experienced the same type of emotional challenges when I heard that’s my only daughter.
[00:11:04] I have one daughter, one son. My daughter began her treatments and thank goodness she was able to get better and her cancer went into remission. But nine years later. My daughter contacted us and told us that her cancer had come back and that she was looking at metastatic breast cancer, meaning that the cancer now was in, her blood, was traveling, you know, through her whole body.
[00:11:34] And that there really wasn’t any cure for metastatic and that the doctors were telling her that average life of someone with metastatic breast cancer was about five years. So there was a whole different set of emotional challenges that came along with that. So I’m a caregiver for her, but she’s married at the time and her husband’s the primary caretaker.
[00:12:05] But again, my daughter and I very close. My daughter was born when my wife and I, we were only 18 years old. And I tell people all the time that you know, that was a whole experience, but my daughter brought a lot of things into my life, you know, that I’m so glad that, you know, she came.
[00:12:28] I didn’t want a baby at 18, right. But. Things got a little worse. Matter of fact, they got a lot worse because while my daughter is fighting metastatic breast cancer.. In 2021, my wife’s cancer came back after being in remission for 25 years. Her breast cancer came back. And now I have not only my daughter fighting metastatic breast cancer, but my wife fighting metastatic breast cancer as well.
[00:13:01] Unfortunately, my daughter lost her battle with breast cancer, Kenneth, and she passed away in December of 20 22, 48 years old with a 16-year-old and I think a nine and a 8-year-old, you know, at the time. So there were a lot of different emotions that i’ve experienced with dealing with breast cancer for loved ones, for women that I love more than anything in this world.
[00:13:35] My wife is still undergoing treatments right now for her metastatic breast cancer. And the thing that I was just hoping to bring out, you know, in this segment that we’re having right now is that the caregiver’s journey changes from time to time. My journey back in 1998 is much, much different than my journey now because I’ve had to see a daughter die from this disease.
[00:14:11] The one thing that has helped me is that in 2004, my wife and daughter started a breast cancer, a nonprofit breast cancer awareness and advocacy group called Praise is the Cure. And it was through Praise is the Cure that I really started to understand breast cancer and really started to understand what it means to be a caretaker.
[00:14:42] And one of the things that I would like to talk to you about, you know.
[00:14:50] My perspective on that has changed so much, not only from my faith, which is the cornerstone of my, even my existence right now. Or else, I’d be crazy. But one of the big things that I’ve learned in dealing with these situations is how important mental health is, and when I have an opportunity to talk to male caretakers.
[00:15:19] Especially Black men, I can’t have a conversation with them without talking about the importance of a mental health, how important that is. So you being a mental health person, can you shed some light on mental health and what you’ve seen as far as mental health goes with Black men in particular?
[00:15:44] Kenneth White: Yeah. Well, I mean I think we have to start with just in general, right, the stigma of not seeing mental health as an important component of daily life with men, right? We kind of condition that concern, that thought, that need out of, out of boys early, right? We conditioned to do doers. I mean, I remember when I when Renee and I first got married, you know, every time she felt just a little uneasy, I would go into overdrive, right?
[00:16:26] I just trying to fix everything, right? So she wouldn’t feel any discomfort. And I remember one day she told me, she said, I don’t need you to fix anything. I just need you to listen. Right. And so that opening up to being able to just sit you, you said it earlier right, to be able to just sit with how I’m feeling.
[00:16:50] Right. And to know that I have one of the things that I do with my male patients is we bring out a, an emotion wheel, and we just talk about emotions, right? We just. Look at the words and I ask them, what do the, you know, what does that mean to you? Right? What does disappointment mean?
[00:17:13] What is frustration? What is resentment? Right? What is elation? What is joy? What is relief? Right? How do you deal with that? How do I deal with those moments when I feel comfortable? But I also feel guilty because my wife is uncomfortable.
[00:17:36] Right. I’ve had a really good day and I come home, but I see my wife all bandaged up.
[00:17:44] Right. And I’m almost feeling guilty, right? Yeah. Because as a Black man, right, we’ve been told we continue to come up short. And so even if I’m not, I have a kind of measure in my mind that may not even correlate to my experience or my wife’s experience, right? How am I viewing myself through the perception of someone else?
[00:18:17] You know as you know the kind of double consciousness. How am I viewing myself or perceiving that I’m viewed, right? Do I feel like my mother-in-law and my father-in-law feel like I’m giving my wife enough support, right? Because of that value. So I think that mental health piece, right, that just, that, that fundamental piece of getting someone, not even to talk about it yet, but to just identify what you’re feeling, put a name to it.
[00:18:58] And if you could get someone, I think especially getting a man to talk to a man about identifying how you are feeling, right? And then they could start to talk about why they’re feeling that way and that can really open them up to be able to then start to hear from their wives and not feel like we have to be fixers.
[00:19:25] That I tell my patients. One of the I had a professor, I went to Loyola professor his name was Robert Wicks and he used to always say that desire to fix, prove, and make up for is a very dangerous place. It’ll always make you try to over perform.
[00:19:47] John Conner: You know, I appreciate you
[00:19:51] breaking it down the way you did. And I know for me my, wife first had breast cancer I know that I didn’t do as good a job as I wanted to do. And the big issue with me was that for the first time in my life, I was faced with a challenge that I couldn’t fix. It absolutely threw me into a bad place, and it threw me into that bad place for several years because I just felt that I couldn’t figure it out.
[00:20:28] I was always able to figure it out, and then I got so frustrated that I was like, oh, well hell with it. You know? I’m not worth what I wanted to be worth. I wasn’t able to be there. But again, through that whole experience. You know it threw me into a dark spot and God actually sat me down. He sat me down and he tried and he explained things to me, and this is where my faith really came in, and I want you to talk about that too.
[00:21:04] But for me, you know, once I developed this relationship with God, I understood that it wasn’t for me to figure everything out, and I didn’t have to figure everything out because I knew that I had someone who was in control. And even though I didn’t have answers, He had the answers. And that changed my approach.
[00:21:32] And I think that now having been there, and I understand that. I think I’m a real good caregiver now. I really think I am. I’m proud of myself. Don’t get me wrong, I have my moments. I have my moments, but when I see myself going down that hole and giving myself a pity party, I remember to stand back and to turn it over to Him.
[00:21:59] He knows best, and that’s what I ask for all the time. Again, I know you, your spiritual background. You know, just talk about a little bit about I know everybody doesn’t worship the same God and I know that’s not necessary. That’s not necessary, but what do you tell people who were where I was? You know, they just didn’t understand, who frustrated that they didn’t have the answers.
[00:22:27] They couldn’t make their wives feel better. They watched them suffer. They couldn’t help, and then it threw them into a deep spot. And for me, my faith was the one who got me through all that and has given me the answers that I need now. What do you tell people as it relates to, to faith?
[00:22:45] Kenneth White: Yeah. I think that, you know, what you’re saying is so important, right?
[00:22:52] And that is how do we walk with persons on a path? As partners, as fellow Sojourners, right? And how do we notice our reaction, right? Our desire to fix. For me I had to give myself permission to fail.
[00:23:35] Because in doing that, then I started to say, Lord, I’m not asking you to do something that I can do. I’m asking you to do something that I fundamentally can’t do. And when Renee started to see that, then I was able to ask her questions. Right. I was asking her, I began to ask her questions about how her faith was being informed by this experience.
[00:24:08] Right. She became, in many ways a spiritual reflecting pool. Right. Because I didn’t feel like I had to perform I’ll, throw out a name that you, I’m sure you’re very familiar with Paul Tillek, the great 20th century theologian who invites us to con consider that faith is doubt, right?
[00:24:40] Faith is that thing that actually comes in when we’ve come to the end of our efforts and now we are watching and allowing God to do what only God can do. Right?
[00:24:54] John Conner: I, I know when we talk about trust one of the things that we’ve done with Praise is the Cure is we talked a lot about clinical trials.
[00:25:06] Kenneth White: Yes.
[00:25:07] John Conner: Because you probably know from just dealing with your wife that, you know, Black women are dying at a much larger rate than other ethnic groups, and a lot of it has to do with the fact that women aren’t, Black women aren’t participating in clinical trials, and therefore the research isn’t being done.
[00:25:28] Because what might work on one ethnic group yes, may not be effective. So I know I’ve been challenged with trying to get people in the African-American community to participate in clinical trials, but it’s that lack of trust. That’s a history of Black people in America, you know communities, Black communities, underserved communities.
[00:25:56] I mean, we’ve been the victims of racism in so many different ways, through education, through our jobs and through healthcare. So I’ve had a hard time, and only thing that I know is that. People listen to somebody that they trust. Who’s bringing the message? Who would you suggest we should look towards and try to put, get involved in this?
[00:26:29] That can bring the message that the people in our communities would trust?
[00:26:37] Kenneth White: Wow. That’s a great question. Right? If I had the answer to that question I could write a book and, you know, and I come on up. You might come up with one. Now I come on up to Kely and take you out to dinner.
[00:26:49] I, I think, yeah, but that’s a very important thing, right? Because what you’re asking is fundamental question, right? How do we change the nature of the conversation, right? How do we… how do we put ourselves in a position where we’re not always playing catch up, or we’re not always trying to put the genie back in the bottle? Where the numbers aren’t so astronomical that now it becomes an emergency situation?
[00:27:23] And then that’s where you have, again, a number of recurring slipups, right? Because it’s an emergency situation. So I think what you, I think what you’re, what we’re doing now, right? Which is to put diverse faces from within the Black community, right? So you’ve got a Black man from Philly, right? And you got
[00:27:53] a Black man who lives in southern Maryland but is originally from Texas. We have to begin to explore the diverse voices and the power of those voices within our own community. And to realize, even though we say we’re not monolithic, sometimes we view ourselves that way until it becomes an emergency situation.
[00:28:24] And we’re asking that question, how do we broaden the conversation? So, you know when you have your organization, right. Having those conversations. Or we can start the conversation about mental health or we can start the conversation about actually being a part of treatment trials. Right. That this actually is not the 1920s.
[00:28:53] Right. And that yes, that happened, but that is not what is happening now. Right. And to get ourselves to admit what it actually is fear of the unknown. And that is okay. Right. You know that what is, you know, we overcome fear with love. We overcome fear with engagement, right? That fear isn’t something to be ignored.
[00:29:26] Fear is also information, and I’m not talking about this biblically or scripturally. I’m talking about this biochemically, physiologically, right? You know. We have pain, we have pleasure. What does pain do? Pain tells us there’s something in our environment that can be harmful that we either need to stay away from or at least be guarded against.
[00:29:48] That’s just information pain. I mean pleasure. What does pleasure is something that we are drawn to that can actually be helpful to us, to help us to live and to thrive in our environment. So when we look at our emotions that way as information. Fear is information. It’s telling me something how many times, especially when we were younger.
[00:30:16] I know we don’t do that now. We’re older and wiser now, but when we were younger and we felt something and we knew we should have stayed away from it. But no, I over, I overrode my fear. Right. I still, so, so if we could start to look at these things as information and as you were talking about, develop these networks where we can connect with other persons and converse with them and say, Hey man, you know, I was thinking about this when this happened.
[00:30:45] This came up for me and I don’t, i’m not even familiar with that. What is that? And start to have those people that we can really talk about that with or have open forums. Why can’t we have open forums in churches where you have 20 or 30 Black men talking about fear and mental health and being a caregiver and supporting or
[00:31:09] the same things with women. What will end up happening is you’ll have people starting to volunteer for those clinical trials. Right.
[00:31:19] John Conner: Thank you so much, my brother. I appreciate that. Words of wisdom. Thank you.
[00:31:26] Adam Walker: Well guys, this has been a great conversation to listen to. I really appreciate I appreciate your vulnerability.
[00:31:35] And I appreciate your perspective and I think it’s really important. One, one last question that I want and I hate to stop, honestly, I hate to stop the conversation. I feel like you, you could have talked and given us value for another hour. But we have to wrap. That seemed like a good place to stop.
[00:31:52] So as we’re wrapping up, what advice do you have for other men especially Black men who are in the midst of this experience right now, at this moment?
[00:32:07] John Conner: Well, you know, for me I think that what we need to do is we really need to come to grips with who we are. We need to look in the mirror and not be afraid of what we see, but to recognize our strengths and our weaknesses. Adam we can’t help anybody if we can’t help ourselves. Yes.
[00:32:43] Adam Walker: Yeah. That’s great advice.
[00:32:44] Great advice. Kenneth?
[00:32:46] Kenneth White: It’s the same thing that I would say that is that I would say to my wife or to, to Black women. You don’t have to be a superhero. You don’t have to carry all the weight by yourself. It’s okay to ask for help. And that is that’s a I don’t know, I don’t know the right word.
[00:33:15] That’s a place to come to, right. Because that desire to make it better that as John was saying earlier, I can fix this. Like, I’m really, I like I do things, I can do things, I can do this. And to be able to say I don’t have to, I don’t have to be able to leap over tall mountains and I don’t have to be a faster than a speeding bullet.
[00:33:42] That I can be vulnerable. I can ask for help. And that’s okay.
[00:33:48] Adam Walker: Yeah. Is okay. Yeah. Being vulnerable is never easy, but I think, so important, you know, based on your conversation. Well, gentlemen I, again I can’t thank you enough for just being vulnerable and for sharing your story, for sharing your encouragement and your wisdom and I think there’s just so much here for our community.
[00:34:08] So thank you for joining us on the show today.
[00:34:11] Kenneth White: Thank you for having me, John. It was an honor. Adam, it was an honor. John I hope that we’ll be able to connect again. I’d love to.
[00:34:22] Adam Walker: Thank you to our listeners for joining another episode of the Komen Health Equity Revolution podcast series. We’ll continue to galvanize the breast cancer community to support multiple populations experiencing breast health inequities to advance and achieve breast health equity for all. To learn more about health equity at Komen, please visit komen.org/health equity.
[00:34:45] To learn more about resources and support, please call our Komen Patient Care Center at 1 8 7 7 4 6 5 6 6 3 6, or email helpline@komen.org to get started today.
[00:35:04] Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit real pink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter at AJ Walker or on my blog adam j walker.com.