Reclaiming Sexual Wellness During Chronic Illness And Cancer

Nobody warns you that a diagnosis can change your body, your confidence, your relationship, and your sense of self all at once. Sandra L opens with a clear challenge: patients are tired of being dismissed, talked down to, or treated like a template, and real patient-centered care only happens when we communicate and build solutions together.

We’re joined by Ebony Mushell, founder of Proud The Lab, a bilateral breast cancer survivor and lupus patient advocate creating tools for healthy sexuality in chronic illness, cancer, trauma, and disability. Ebony explains why sexual wellness in cancer care is often ignored even though studies suggest a huge share of patients experience sexual dysfunction. We talk honestly about supermenopause, body image shifts, fatigue, intimacy after surgery, and how illness impacts partners and kids. Ebony also shares the turning point that led to Proud The Lab after being turned away for help, and why dignity-affirming whole-person care should be the standard.

You’ll also get practical steps you can use immediately: Ebony’s three recommendations for clinicians to break the “mutual silence” around sexual health, plus three ways patients can prepare, track symptoms, and use their voice through notes, portal messages, and better questions. We end with the five circles of human sexuality and the resources Proud The Lab is building to bring joy, connection, and confidence back into survivorship.

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Transcript

Meet Ebony And Proud The Lab

SPEAKER_01 0:01

Good day, everyone. And thank you, thank you, thank you so much for tuning in to speak in with Sandra L, the monthly podcast where we will be discussing all things patient related. Because yes, we're at that point in time where there needs to be a patient uprising, no matter how old the patient is, what you know, what the race is, what you know, age is whatever. We need to have a patient uprising because I'm starting to hear more and more how we as patients are being um, we're being made fun of. And it's not fun being a patient, the pain that we have to go through to live through, you know, to hear, to understand that we have to see our children doing the same thing, you know, going through it because they're seeing us struggle and it's hurting them. And so for people to make fun of it, it's not a good situation. It doesn't bring us hope. So guess what? We gotta, we gotta do it ourselves. We gotta push it to the own level of doing it ourselves by talking about our experience, what we experience, not so much that so that we can bash positions, because speaking with Sandra L is not a bash position platform. It's a let's all get together and start understanding where each other stands, where each other is coming from, so that together we can make sustainable difference in the healthcare system. What good is what good are we if we take one step forward to take 10 steps backwards? That's not any good. And a lot of times it happens because we're not speaking to each other, we're not communicating with each other. Patients understand patients and providers understand providers, but we need to get to the point where we understand each other, where we feel like we can talk to each other and come up with a sustainable solution to the problems that patients are having so that together the healthcare system can move forward. So, with that being said, I am so pleasantly pleased that our first monthly guest is Miss Ebony Mushell, aka Prowl the Lab. This young lady is doing some awesome things. And, you know, I'm gonna let her talk a little bit about what Prowla Lab is, but I can tell you right now, not I said it said it a few minutes ago, despite the age, right? We gotta stop looking at, okay, well, this person's too young to be experiencing that, or this person's too old to be going through that. We gotta start looking at it from a holistic standpoint. So when I say, you know, young lady, she is she's a young lady. When I say professional, she's very professional. When I say awesome, she is awesome with a capital A, a capital W E, a capital S O M E. She can't, yes, she's all of that. And so without further ado, I'm gonna go ahead and let her tell us what exactly is Proud the Lab.

SPEAKER_00 3:19

Well, first and foremost, Sandra, thank you so much for having me on your podcast. This is such an amazing honor, and I'm so glad that we're finally getting to have this conversation. So I greatly, I greatly, greatly appreciate it. I'm humbled, and again, I'm very honored. So, Proud of the Lab is an organization that was created in 2022 out of my experience. And what we do is we focus on the healthy sexuality of women, men, and couples who are navigating chronic illness, cancer, trauma, and different abilities. And it was created because there is a critical gap in patient care when it comes to healthy sexuality. And I know a lot of people hear the word sex and they kind of stop there, but you know, that's a very small part of who we are. It's about the evolution of your manhood, it's about the evolution of your womanhood, and you know, for everyone who's a patient out there and a patient advocate, once you receive a cancer diagnosis or a diagnosis of chronic illness or trauma or different ability, your life is forever changed. So understanding how to navigate the world, understanding how to navigate your own experience is really what Proud the Lab is all about. And again, it's just it's been born from my experience, my trials, and even my tribulations, navigating the healthcare system and the relationships that I've built with the care teams that have been involved with my care and my health.

How Diagnosis Impacts Family Life

SPEAKER_01 4:56

You know, and that that's so important for people to know that the conversations that we have and that we're having tonight is not coming from a second party or it's not coming from somebody, you know, we're reading the story and this is a story we've come across. It's coming from that personal experience. We are talking from what we know because we're patients, because we're going through it. Now, I'm gonna be honest, I have not been diagnosed with cancer, but I have a couple of other comorbidities, which sometimes, you know, it it is a struggle just to you know lift my head up and just to think clearly through a clear day. So it's important for you to know that these are not stories, these are factual attributes and factual, you know, let's say documentaries of what's going on in the life of a patient. And so, Ebony, I know you have a son, a daughter, and I know you have a loving husband. So can you tell me what part of what you're going through, how does it impact them when they see mommy or they see as a wife, they see you struggling and going through changes. How does that impact you? How does that impact them? And then how does it impact you?

SPEAKER_00 6:17

Well, you know, I think that many of us who have had challenging diagnoses, and I'm not just a bilateral breast cancer survivor. I was um diagnosed with breast cancer in both breasts. One side was stage 1A, and the other side was HER2 positive. Um, and I think that for many of us, when we are navigating these diagnoses, you are not the only one that is diagnosed. Your entire family is diagnosed. You go through many changes, some that you may expect and some that you don't. So when I was diagnosed with lupus, my son was three months old. So for my son and my daughter, when it comes to my lupus, they've never known anything different. When I was diagnosed with breast cancer, though, my daughter was three and my son was eight at the time. So he was old enough to know mommy before breast cancer and after breast cancer, and it literally impacted every facet of our life. You know, I think about the fact that you know, at one point I was cooking almost every day, I was homeschooling my son, you know, we were active, but after my breast cancer diagnosis, things shifted. I had for my five years of treatment, I had a surgery every year. So my son saw me lose my breast, go flat, come home with new breasts, not really understand what that was all about. You know, he's seen me at, you know, the point where I am, you know, bent over a toilet sick and can't get up and move, to, you know, trying to do my best to learn the new TikTok dances in the kitchen with him. By the way, he rolls his eyes the entire time. Like I'm just the oldest thing, like I'm Methuselah. But I I let him have it, I let him have it, you know. So they've seen every aspect of it. And my husband, I you know, I did a session with him last year with couples, and that was really where I understood how my diagnosis affected him. And the way I was speaking to someone about this yesterday, and the only way that I can really explain it was emotional impotence. You know, he didn't know how to support me when I was hurting, you know, mentally, you know, physically, emotionally. How do you you help your wife through that? And he knows, you know, I saw my mother die from breast cancer, and my grandmother was also diagnosed with breast cancer, and even though she died from Alzheimer's disease, she passed away maybe two months after my mother did, you know. So he was, we've been together since we were 19. So, you know, now in our 40s, we had matriculated through our adulthood together completely, so it changed the texture, it changed the tone and the experience of our relationship. And I know that there are a spectrum of experiences for patients in their families, but I must admit that I was blessed in that the way that my husband showed up for me allowed me to fall in love with my husband all over again in a very different way. He really embodied that, you know, in sickness and in health, until death do you part. And I know that I would not have been able to have made it this far and be doing what I'm doing every day if it were not just for my if it were not just for my husband, but also for my children as well, because my family luckily happens to be extremely supportive of what it is that I do. Thank you so much for that.

SPEAKER_01 10:15

And it's funny, I'm sitting here and I'm smiling and I'm I'm chuckling inside of myself because I know before we came on, I told you, I said, you know what, we're having a problem with the printer. And I said, So, do you want to introduce yourself or do you want me to pull it out of you? And you was like, Oh, you if I do it, you never know what you're gonna get. So we just got it all.

SPEAKER_00 10:40

I'm just saying, you know, we care for what you ask for, you never know what you're gonna get with me.

SPEAKER_01 10:45

And look, and I love getting it all because we need to know, patients need to know this. And so caregivers and so people that are not patients need to know as well that normally when you get a diagnosis, there's gonna be another diagnosis that comes along with it. Whether it comes along immediately or whether it comes along later, it's gonna be another condition that they're gonna diagnose you with, or they're gonna say this is what you know is wrong. And it it's it's just gonna happen. It's inevitable that it happens. I'm not, I don't know anyone in my lifetime that has had one diagnosis and that was it. One breast, you know, one breast cancer, one cancer diagnosis, and that was it. I've lost family members to cancer, and it was always one type of cancer primary and another type of cancer secondary. I've lost people that have lost their lives to diabetes and it's hypertension with diabetes, but it's always more than one diagnosis that you'll get, whether, like I said, whether you get it now or whether you get it later. And you need to know these things so that you can prepare your mind and your body for okay, I don't know when it's coming, but it's coming and let me be prepared for when it comes. So, you know, you had lupus, you were breast cancer, you're going through some other additional things right now. And here's the mindset, but you haven't given up.

SPEAKER_00 12:21

Oh, absolutely.

SPEAKER_01 12:22

You know, you haven't given up. You keep going, and you keep going, and that's what we want. That's what speaking with Sandra L is all about. Let's keep going, let's not let's have a patient uprising where we're actually talking about those things that are hurting us and hurting our families and hurting our loved ones. Let's start talking about those things so so that we could bring attention to those things. So within your bio, you have so many things going on with you. And like you said, you're in your 40s. You could have been getting up.

SPEAKER_00 12:54

No, yeah, no.

Sexuality As Identity And Care Gap

SPEAKER_01 12:55

You could have been like I don't even see the hourglass no more. I just see what is me. But you refuse to do that. So let's go ahead and help the people that are listening so that they can get a better understanding of what it is and how it is that they can one reach out to you and get some additional assistance, and two, reach out within themselves and have these conversations within themselves so that they can come to the realistic thing that I'm not alone in this. So, my first question to you is you've often said that healthy sexuality is a human right. How did your survivor journey shape that human right for you?

SPEAKER_00 13:36

Um, I honestly can say before my cancer survivorship even came into question, before even my lupus, I have had issues in terms of my reproductive system and some challenges since nine. Um, I was diagnosed with precocious puberty, which is when your cycle comes on before 10. And so I had to deal with um my body budding or blooming, if you will, before a lot of other young ladies my age. Um, I also dealt with endometriosis and adenomiosis, which is really heavy bleeding, a lot of pain. For endometriosis alone, I've had like eight different surgeries. And so a lot of this was happening during my teen years. And so I learned early on that my sense of sexuality, even though that's not, you know, I didn't know what the term was for, but my evolvement, my evolving girlhood and womanhood had always been impacted by these challenges. And one thing I also don't talk about often, and I'll mention it every now and again, is that I also have sexual assault in my past as well. So all of these things converge together to create a space within my life that was very confusing for me, that was fraught with a lot of adversity. And if you can imagine when you're 13, 14, 15, 16, nobody wants to talk to you about sex and sexuality because there was that mindset when I was growing up that if we had these conversations with our children, then we're telling them that it is okay. We are pushing them into that part of their adulthood when I don't think a lot of our parents realize okay, you aren't talking to us, but we're talking to our friends, and it's the blind leading the blind, so we're trying to figure all of this out all at the same time, and nobody's doing it right, you know. And so for me, knowing that I also had these issues that deeply affected my confidence, you know, my relational self-esteem, it was very challenging for me. You know, I know at one point in time I even told my husband, like, you know, we were dating at the time, like, why are you with me? You know, you could be dating somebody else that's not in the hospitals, you know, that you know, I've had situations where my psycho was so heavy, we had to wake up in the middle of the night and change the bed, and you know, all these different things. And you feel broken, you feel like something is wrong with you. And I finally got to the point where I realized that these are the things that happened to me, these are not my fault. So I have to figure out a way to move forward because there was a part of me I used to say, I don't want children, but there's always something inside of me that told me that I was going to be a parent, even when numerous physicians told me that I would not be a parent because of my endometriosis, because of the ovarian cysts and some other issues that I have with my reproductive system. And my husband and I were together for 14 years before we got pregnant. So I truly used to wonder why these things happened to me. Like, why am I going through this? I, you know, had many conversations with God because even in my youth, I will say that I had a very strong connection to my faith. And I really believe that those things were conditioning me for what I was going to have to deal with as an adult. And I think that that is what I when I learned to advocate for myself. I don't take any pill, I don't care what the doctor says, you're gonna tell me what it does, you're going to, I'm gonna phrase you, what other medications am I taking? If you can't answer that question, then you're not the doctor for me because that means that you didn't do your homework, you came in here with a plan, and that plan did not include understanding my background and my unique challenges. And one of the things that I often talk to women about is you have to advocate for yourself. And I'm like you, I'm not here to bash doctors, I'm here to partner with clinicians, and I'm here to partner with individuals in the medical community because we understand that there's not enough time, there are too many patients, there's a full spectrum of diagnoses that one specialist, you know, one primary care physician, one oncologist has to manage within their patient base. So we really do have to work together, and it really was that experience that really opened my eyes even more in my survivorship status, if you will. And technically, I just reached my five years, I I just stopped active treatment, even though I'm still taking my aromatase inhibitors. Um, but you know, I've been turned away when I was having issues with sexual dysfunction. I was turned away from one of the top hospitals in Chicago and pretty much told go elsewhere. And I was like, I will not allow another woman to be made to feel this way. And it was through that experience as a patient who was discarded, who was gaslit, that Prowl the Lab was born. And I'm just very proud of the fact that we work very hard to ensure that Proud the Lab is dignity-affirming, that it is whole person care, and that is inclusive, not just inclusive of medical conditions. We are also inclusive of every person that is on this health journey where challenges arise, and we may not necessarily know how to overcome these obstacles on our own.

SPEAKER_01 19:42

So, my next my next question to you is this, and so you're doing the work that you're doing through Parala Lab, and you're doing your part, right? As far as the patients from the patient's perspective, you're doing your part. How do you encourage the clinicians and the healthcare providers to actually come on board and say, okay, well, instead of, and I and I say this all the time, there are certain words that are in the healthcare vocabulary that are uh verbs, that action verbs, but they're used as nouns because they're not being used correctly. One of those terms is patient-centered care. If you look up the definition of patient-centered care, it will tell you exactly that it's a patient and the doctor working together. So process is happening, it's an ongoing process. So that word being used as a noun is stagnated so many times because nothing comes of it. So, how do you see from your standpoint providers can come on board? And I'm calling on all providers and putting the providers as a whole. How can providers come on board and say, okay, well, you know what? You're right. This is an action verb. Let me see how I can become more active and talk to my patients, especially the cancer patients, when it comes down to you, you know, sexual sexual healing, sexuality, when it comes down to those things, what are three recommendations that you would say that could really help booster that communication effort when it comes down to that?

SPEAKER_00 21:27

I think that number one, the first thing is grace. And I think that that's grace on both sides. Because when you think about it from the physician standpoint, there are less than 25% of oncologists, let's just say, that have any formal training in sexual wellness or healthy sexuality. So it's very difficult if you don't have that training, if you don't have that foundational basis of knowledge to work from so that you are able to keep. For your patients. But the other thing that I want to say is that I find that clinicians really do want to meet the needs of their patient. But when we're talking about healthy sexuality and specific, specifically sexual wellness, there's this mutual silence on both sides. And physicians feel like, well, if the patient isn't bringing it up, then it's not important. And the patient feels like, well, if my physician's not going to bring it up, I'm definitely not going to bring it up because there's a lot of shame, there's a lot of embarrassment, and there again, there's a lack of knowledge. So one thing that I mention to physicians and clinicians all the time is that start today to have these conversations. And if it's just with one of your patients, you know, I know that you have been in treatment now for the past six months. Are you having any issues with your sexual wellness that you would like to cover during our session today or during our visit today? Or, you know, more likely, women, for example, are more comfortable talking to other women. Men many times are more comfortable having these conversations with other men. So I also impart to male physicians that sometimes it's important to designate a point person in terms of your nursing staff to speak to some of the women that are in your patient base so you are able to guide the conversation in a way that is much more comfortable for both parties. Starting these conversations, excuse me, conversations immediately is critical because it's muscle memory. If you are not used to having these conversations, if you are not comfortable having these conversations, then that silence persists. But if you're able to work that muscle and you're able to use it repetitively in a way that it becomes second nature, then you're not only doing a greater service to your patient, you're also doing a greater service to you as a physician because you're seeing your patient as more than just patient number 0014. You're seeing that patient as a human, you're seeing that patient as an individual, and that's really important. I think the second part that I impart to clinicians is that healthy sexuality must be incorporated into care plans from diagnosis all the way through survivorship. Because if you're having these conversations six months to a year in, that means that your patients are prepared. They don't understand what they're going to face. And there is so much weight that patients feel when they are not prepared for supermenopause, when they are not prepared for the loss of sexual function, when they're not prepared for body image changes and changes in your self-esteem and your ability to love yourself through these challenges that you see your body going through. It's really important to start these conversations as early as possible because not only are you preparing your patient for what they are going to face, you're also putting yourself in a better situation to help them navigate those challenges. And the third thing that I tell clinicians is you must be aware of what is available in your healthcare ecosystem so that you are able to apply a multidisciplinary approach so that there is holistic care that is provided to your patients, whether it's pelvic floral therapy, sex therapy, physical therapy for women who experience menopause because of their treatments, even when they have when they're diagnosed with lung cancer, but they all have breathing issues as well. So you have to incorporate a pomologist into that multidisciplinary approach. So understanding the challenges that your patients could potentially face and making sure that you understand all of the disciplines that are available in your ecosystem is critical so that you are able to provide the most appropriate recommendations for care for not just for your patients in terms of the individual, but again, this is something that becomes second nature and you're able to support your full patient base once you have that level of knowledge.

SPEAKER_01 27:02

And I thank you so much for giving me that, giving us that information because it's important. It's important for the clinicians to know the things that they can do. Not so much that we're telling them their jobs, but we're telling them how to reach the patient, how to actually from your from a clinician's standpoint, how to put that patient-centered process into motion. Right. And so on the opposite side of that, so that's the patient, that's the doctor saying, okay, well, we would really like to know what's going on and how we can help, but the patient isn't telling us. So we just found out three things that they can do from their wheelbarrow to actually help a patient, you know, to get to that point where they feel comfortable enough, not so much even feeling comfortable enough, but where they trust them enough to talk to them about their human sexuality, to talk to them and let them know, hey, you know, due to these body changes, this is some things that I'm experiencing. Because even if they don't know and they can't help the patient, at least they can start looking to and saying, being honest, hey, you know what? I normally we got this good relationship going on, but there's some things that I don't know. Perhaps I could send you or refer you to or have you speak to someone else that's in that I'm collaborating with that I'm knowing um that can help you with that. So that's the pay the doctor saying, okay, well, we can't read the patient's mind. Then we got the flip side of that, where the patients are thinking that doctors are mind readers, and of course they're not. And a lot of times it's unfortunate, but it happens. Some of the best doctors get railed on because their patients are not educated in the mindset of I need to open my mouth. The tool is the most important thing that a patient has, yet a lot of us fail to use it. And sometimes, even when we use it, we use it in the wrong way with the wrong language, the wrong time, the wrong tone of language. And so, you know, it's a lot that goes into the mindset of the patient thinking that the doctors know it all. Um, there's only one God. And I don't know a pay, I don't know a provider living or dead that was God. I mean, and that's just my personal opinion. But I want you to tell me three things or tell us three things that patients could do to help them ease into having that conversation with their provider so that they can get help, especially in terms of the um sexuality.

SPEAKER_00 29:47

Well, I think one thing that my my doctors told me, and I didn't listen, um, and in a sense, I'm kind of glad I didn't, but one of the things that your doctors will often tell you is like, don't Google your diagnosis. I am not, you know, I didn't just subscribe to that because I want to be as prepared as I possibly can when I go into that room. And so one of the things that I do tell patients is that you have to prepare yourself as much as you possibly can. Once you do have a diagnosis, and I also say don't worry until you have something to worry about. You know, I don't want you, you know, look, I wouldn't recommend to someone looking up, you know, the signs, the symptoms, or the challenges with lung cancer if you don't know for a fact that that is what your diagnosis is, because that's anxiety-inducing, that is fear-inducing, and that causes a whole nother host of issues. But once you have a firm diagnosis, do the best that you can to understand what your treatment options are and what those treatment options could cause to develop within your body. And one of the things that we talk about quite often in cancer care, especially among women, is the supermenopause, the hot flashes, the vaginal dryness, you know, the body image concerns, the lack of sleep and the fatigue, the joint pain, the body pains. There's so many things that we can experience as we're going through treatment. So the second part of that is keeping track of your symptoms. Keep track of the changes that you noticed in your body, not just the physical changes, but sometimes your scent may change, for example. Sometimes, you know, there may be a different look to your scars than you noticed last week. So things like that, it's really important that you keep track of what your symptoms are, what your body is matriculating through, so that you are able to have these conversations with your physician when you're ready. And the third thing that I would say is that you are your own best advocate. No one can advocate for you like you can, because no one is understanding that experiences and the nuances of those experiences like you can. And let's be honest, you know, especially if you're a woman and you please excuse me, and you have a male doctor, sometimes it's very difficult to have those conversations. There's nothing wrong with writing a note to your physician and passing a note to your physician. There's nothing wrong with saying to you to your physician, you know, there are some things that I'm concerned about, but would you mind if I spoke to, you know, your someone on your senior nursing staff to get some of the questions answered that you may not necessarily feel comfortable having those discussions with your physician for whatever reason. But I think another thing that I would say is this if you are not comfortable with your physician, and if you cannot trust your physician to have some of these really important conversations, then there's something that is going to have to give in that relationship because that discomfort breeds the perpetuation of that silence. And it is so important to use your voice, and that is the by far the most important lesson that I have learned throughout my experiences, you know, from childhood up through this breast cancer diagnosis. My physicians did not know what I was experiencing until I told them. And I know you can think, oh, well, they're the physicians, they should know. Everybody's diagnosis and everybody's experience is not the same. So it could be that you're experiencing vaginal dryness, for example, but your physician is not going, may not talk to you about that because they may think that you're one of the very few patients who don't have to deal with that symptom. So that's not something that they have to discuss. So understanding what you could potentially face so that you're able to ask those questions, making sure that you're able to use your voice, implementing different modalities of having that communication, whether it be my chart messages, again, slipping a note to your physician or putting a note in your chart via the nursing staff, whatever it is that makes you feel most comfortable, is the way that you should proceed because it is your comfort, it is your health, and it is your healing, and your ability to not just survive because survival should be the floor. It's the ability to survive, excuse me, that to thrive that is most important. It's your ability to thrive that completely decimates that glass ceiling of simply existing beyond your diagnosis that is most critical.

Individualized Care And Better Dialogue

SPEAKER_01 35:16

You know, and I I do want to say thank you so much for giving us both sides, for being open and honest and giving us both sides. Two things that I do want to bring up when it comes down to patients. One, you can use the internet, however, you need to know what's a reliable source and what's not a reliable source. One of the courses that we offer through the VASHTA Learning Lab is health literacy, and it teaches you what and it's actually online health course. It's an online teaches you how to use online courses. And one of the methods in which we go talk about during the course is the fact that you need to know what's reputable. You go to a doctor and saying, Hey, um, I saw Wikipedia, it's gonna immediately turn them off, right?

SPEAKER_00 36:09

You're gonna it may, it may, but the good thing is at least they said where they got it from. So, and at least they took that question to their physician, and that's what it's about. It's like once you get this information, even from reputable sources, right? Still make sure you have that conversation with your physician because even though you may have the same diagnosis, the same biomarkers, the same initial experience, your life, your culture, your ethnicity, your experiences, your generation, all of these things converge together to create you as that individual. So it's important that in those moments when you are in those clinical environments that you as the individual are being cared for in the way that is most acceptable and appropriate for you, not the other, not the person to the left or the right, because no one will share with you their entire experience.

SPEAKER_01 37:14

Yeah, and you know what, and you're so right about that. What bothers me the most, and I have a pet peeve on it, what bothers me the most is when I hear a doctor say, My doctors know me by now. So they know what they can say to me, and they know what they can't say to me. One thing they know that they can't say to me is, well, all other patients, I'm not the other patients. Um one, give me what's good for me. I don't, you know, it's not that I don't care about the other patients because I do, but because I want all of us to have access to the best healthcare treatments, but I'm in here as a patient, I want you to tell me what Sandra, what looks good for Sandra, what works for her, what might not work for her. And we as patients, we've got to get to the standpoint of when our doctors are saying, doctors, like I said, I love you. This is not a badge physician session. I don't have sessions like that. But I just want to be honest. Stop saying to your patients, well, this is what my other patients do. Or I found that a number of patients do good on this medicine. Start treating them as the humans that they are. Each of us, like Ebony just said, we are we're all one. We're together, but we're one. None of us share the same markers, none of us shares 100% of the same outcomes, the same symptoms, the same whatever. So we don't need the physicians as far as patient care. We don't need you to say to us, well, yeah, most of my patients, I give most of my patients this, and they do so well with it. Um, you know, you you have to actually, patients, you have to actually have your doctors treat you as one and that can't do it if you don't. They can, but a lot of times they'll do it much better if you bring it to their attention that you just told me that this is what everybody takes. What about me?

SPEAKER_00 39:14

But I will push back on that just a little bit. Only reason I I know that that that may be something, you know, that you're not comfortable with, but there are some people who will say, Well, what has been your experience with your other patients who have had my, you know, same type of cancer at my same stage with this type of treatment? What has been your personal experience? Not what you read in an article, not what you read in the study, what have your other patients experienced when they've been on this medication or if they've had to take this treatment path? So I think that sometimes knowing that there are a number of patients that some physicians have worked with that have seen success with certain medications or certain treatments, I think that that does add a little bit more legitimacy of that medication or of that treatment path for some patients. But I also agree with you, I think that the other part of that conversation needs to be, and this is why I think that exactly and medication as well, because this is what you're experiencing, this is what we're seeing in your lab tests, this is what has taken place in our conversations. Right. So just based upon your lifestyle, your experiences, and your diagnosis, I think that maybe this medication is something that you should, you know, you should seriously consider for right.

SPEAKER_01 40:45

It's called the fuller conversation, and that's why I encourage it's a fuller conversation. Don't just leave it at, you know, well, I give all my other patients this. Bring that conversation front and center and say, and here's why I think it will work for you. But for you to leave a conversation as a closed-ended statement by saying, Well, I give all my other patients this, it's a closed-ended statement. And no, no place in healthcare does well when there's a closed-ended statement. It needs to remain open and it needs to be main flowing. So you're correct. If the mental physician speaks in that language and says, okay, well, here's how I treat all my other patients, then it needs to be followed up, and here's why I'm looking at this for you. Not leave it alone, here's what I do on my other patients, not like that. So that's what I encourage is to have that full conversation. And patients, you know what? If they're not having the full conversation, bring it out of them.

SPEAKER_00 41:54

I know like my doctors, they probably can't, they probably think I'm straight. But I asked my doctors like, are you married? Do you have children? You know, what you know, what uh medical school did you go to? Like, did you enjoy? Was this your first choice? I asked my patient, you know, my physicians, please excuse me, the physicians on my care team a lot of questions, you know, because I want you to understand that I'm trying to get to know you so that you can understand that I am hoping for a reciprocal relationship where you also get to know me, you know, and sometimes that's difficult. You know, on average, doctors spend what 20, maybe 30 minutes with a patient, and then they go right into the room to another patient. Many of them have hundreds of patients at the same time. And when you think about chronic illnesses and, you know, potentially terminal illnesses like cancer, the first thought is always saving of life. Survival is always first, and I get that, I accept that, I'm grateful for that. You know, even with my team, my first thought wasn't, oh my gosh, are me and my husband ever going to be able to have sex again? I can't lie, that was probably my second thought. But my first thought, I want to make it through this because just in case I can't, we are about to get naked as much as we possibly can, just to make sure that I go to heaven with a smile on my face. That's all I'm saying. And it's okay to think that way. It's okay. I mean, I was young. I had, you know, we had two kids, and you know, you when your kids asleep, you want to be able to have that intimacy and to have that connection. And cancer is a thief. It is a thief. You know, heart disease is a thief, you know, many times. You know, um, emphysema is a thief. They take so much from you, and you feel as though many times your life. Will never mirror what it was previous to whatever challenging diagnosis that you have. And I cannot speak for anyone but myself when I say I realized that in a sense I had to die so that I could live. I will never be that woman that I was before my cancer diagnosis. I have a much richer appreciation for life. I have a fuller capacity to love and to empathize. And the work that I do, you know, at first I think a portion of it was for me. But I do know that if something happened and I was never able to have sex again, I was never able to enjoy the intimacy, you know, between my husband and I again, I would still keep doing this work because I know how valuable healthy sexuality and sexual wellness is for every woman, every man, you know, and it's not, and when I say every woman, every man, because there's some asexual individuals, there's some people who don't put a lot of um a lot of weight, if you will, on the physical aspect of intimacy, but most of us are seeking connection, most of us are seeking those shared bonds that is for all intents and purposes what moves our civilizations and what moves our societies forward, you know. Healthy sexuality is a human right. This is not a privilege, this is a right. Pleasure is our right, and we should grasp it with both hands. And whether it's the pleasure of eating succulent food, whether it's the pleasure that you find in the arms of another, or even if it is just the pleasure of enjoying your own body, enjoying your own time and space, pleasure is our right in the many different forms that it manifests within our lives on a daily basis. And that is very important for our mental health and for our mental stability as we move forward in life.

The Five Circles Of Sexuality

SPEAKER_01 46:21

You know, that brings me to this point of this. It's not just a mental help, it's a physical help. Health is health, right? So it doesn't just impact the sexuality, doesn't just impact your mental health, it impacts your health. It's a holistic approach to life is that sexuality is what that is. And I am so glad and thankful that we, you know, that you have problems. You know, you and I talk often, you know, you you know, you're challenged on many occasions at the things that you say at your own thought processes. But this is the thing that your thought processes, and as a patient who has lived the experience, the only one that hasn't lived experience that can come and tell you what you should and shouldn't do, what you should or shouldn't say, right? I've told you before, I've adopted you as my my sister, my mom, my baby sister. Right? Because we we as women, you know, and and this is just a side note. We as women and who are out here who are making, you know, making our legacy, who are building, not just for us, but we're building for our community. We have to collaborate. It makes no sense to compete. None of us knows everything. It bothers me tremendously when someone says to me, Well, Sandra, I thought you knew it because you know everything. And I say, No, I don't know everything. I know healthcare, but there's so many sections of healthcare that I there's no way I could touch upon all of them. But I know what I know from healthcare because one, I've lived it, two, I've studied it, right? Three, I've worked it for 35 years. So that's why I know so much, but I don't know everything. There's so many different aspects to it that I don't know it, right? And so we have to come together. We have to honor each other as women. We have to learn the fact that we're all walking this path in life and it's difficult and it's challenging, and it's, you know, may become even more challenging. But I told everybody all the time there's enough people out here that need help that each and every one of us, if we was to come together doing our thing, we would be able to help them. We're hurting our we're hurting other women, we're hurting our community because we, for a large part, don't believe in collaborating. We want to compete, you know. And I tell people, people will ask me all the time in reference to the work that I do. Well, you know what, you ain't gonna make much money from doing it. And it's not about the money for me. Yeah. It's the fact that I know me as a patient. I know, I know that there's days that I need help. I know that days there's that I need to talk to someone and have someone listen to me. So I know if I'm going through it, someone else is going through it. So why not all come together and make something of this, something positive, something sustainable? Because you know, this healthcare system is gonna get better on its own. My other thing is this that I do want to bring up. Please stop using A. Incorrectly. It's okay to use AI, but stop using it correctly. Stop putting in your symptoms and saying, what do I have? Ask AI. Can you what can't you tell me about these symptoms so that it can tell you I'm not your doctor, I'm not a clinician, there's a whole bunch of things I cannot tell you. Stop blindly putting symptoms in AI and saying, okay, so what do I have? And then going with what AI is giving you better. Because the information that you're getting from AI, I don't care what AI platform it is, the information that you're getting from AI is coming from tens and tens and tens of places. It is not your doctor. Please speak to your doctor with these symptoms. Ask your doctor. AI is not human. It's not. Stop using it to be a human because a lot of times what's happening is that you're being led down the wrong road. And before you get some help, because you listen to AI instead of your doctor, before you get some help, a lot of times it's too late to actually receive the assistance that you need to receive. So it's okay to use AI, but please you use AI responsibly. Please use AI ethically, please, instead of you telling it the symptoms you have and then having it tell you what's wrong with you, say what can't you tell me about these symptoms I have so that it can tell you. It will come at and tell you, I'm not your doctor, so I really can't tell you because it goes back to what you just said, Ebony. No two patients are the same. We're all different. So an AI response to anything you put in the system is not based on just you. It's based on everybody that put the same symptoms in the system. Stop, let's let's learn how to use our voices.

SPEAKER_00 51:44

And I think the other thing about that is, especially when it comes to AI, it can give you a greater likelihood. But at the end of the day, the only person that can diagnose you, or the only way that you can actually have a verifiable diagnosis is through a physician or clinician. That's the only way. Um, you know, I think about um, you know, a very well-known um what's the word I want to use for, I guess media personality, you know, was you know, taking a bar exam or whatever. And they're like, you know, I've I've used ChatGB so many times and I've I've failed all my tests. So why are you still using it? Why are you still using it? And I don't mean, you know, I'm not I'm not here to judge, but when it comes to your health, when it comes to your well-being, when it comes to your healing, it is so important that you have a verifiable source. And let me just say, every doctor is not a good doctor, so I'm not gonna sit up here and say that as long as you go to a doctor, everything is fine because you have to do your homework, you have to do your homework, and I think many times we're conditioned to believe everything that the doctor says, and we are told to be quiet, listen to your doctor, they have the expertise, and while they may have the medical expertise, you have the personal expertise, you know your body better than anyone else. Look, I have been with my husband again since I was 19. He has seen parts of me that I haven't seen, but I tell you what, I am not in any way, shape, or form going to take his view or my physician's view on any day of the week. I'm gonna say this is what I'm experiencing, this is what I think it is. Can you give me some options about what may be going on right now? Because I'm concerned, you know, but it is important, it is really important that when you do find a physician that you trust, where you have built a relationship where you feel like the information that they provide is accurate, where they have proven that they see you as more of a person than as a patient, and you have a level of comfort to say this is something that is wrong. Can you help me? Then you have really reached the sweet spot that so many of us are still trying to obtain.

SPEAKER_01 54:14

You know, and you you you say that, and I want to back you up when you say that. And this is a thing, and you said it earlier. This is a thing. We as patients, we don't need to stay with a doctor that we don't trust.

SPEAKER_00 54:31

Absolutely.

SPEAKER_01 54:32

If you do not trust that doctor, it's not, you know, in your best insight to stay with that doctor because I'm gonna tell you right now, nine times out of ten, if you don't trust them, you're not gonna listen to anything they say.

SPEAKER_00 54:46

Absolutely.

SPEAKER_01 54:46

Nine times out of ten, that's a waste of money. That's a waste of money. Not only that, nine times out of ten when you don't listen, what goes into your medical record and into your personal notes, which follow you all throughout the days of your life, is that this patient is non-compliant. And it's not that you're non-compliant, it's that you don't trust the doctor, you're not listening to him, you're not educated on the fact that you need to be finding someone else. So you're sitting there and you're wasting the doctor's time and you're wasting your own time. Stop saying with doctors that you do not trust. If you don't trust them, you're not gonna believe them. They could be telling you 100% honesty, but you're not gonna believe them because you don't trust them. If you feel like you're going to the doctor and the doctor is running you in and out of that office like you're on a, you know, like it's a robot and he's not listening to you and you ain't listening to him, stop wasting your money and your time and go on to another doctor that will listen to you, that will help you to be the best patient you can so that you can receive the best health care you that you should be receiving. Because if you don't, it's not gonna happen.

SPEAKER_00 56:05

The doctor works for you. The doctor works for you at the end of the day, that it is not the other way around. And I think that sometimes we're so afraid to let go of our doctors because it's like, okay, well, I've been with them for so long, but if you're not having these important conversations, that is pretty much an empty, almost invalid space in your life because there's not the continuity of information and discussing that is allowing you to reach your optimal level of health. Right, your physician works for you, and it is important that if you don't trust them, if you can't have the difficult and the challenging conversations that directly impact your health, your longevity, and for all intents and purposes, your very life, then that is a disservice to you, to your family, to those that love you. And in a sense, it's a disservice to them because they are now have a false sense of um success, if you will, and they're going to be treating other patients the same way that they're treating you without really understanding that this is a reciprocal relationship and a reciprocal process that must take place in order for optimal health to be achieved.

SPEAKER_01 57:33

And you know what, and you're so right about that. I have one final question for you, and it's this absolutely can you please tell us what the five circles of human sexuality are, according to Prowl, the lab, and help people that which help people rebuild their identity. Can you tell us what it what those five circles are?

SPEAKER_00 57:56

Absolutely, and actually, this is a framework that was created by Dr. Dennis Daline in 1981. And so the five circles of sexuality are sensuality, which is skin hunger, which is your craving for touch and for closeness. Then there's intimacy, which is your ability to trust and to be vulnerable with another person and allow them to be vulnerable with you as well. Then there is an identity, and yes, that is your um gender identity, if you will. It is your sexual orientation, but it goes beyond that. It's not just about who you love and who loves you, it's about who you see within yourself and how you show up to the world every day. Then there is sexual health and reproduction, and that's our understanding of our anatomy and our body and our ability to reproduce for women and for men as well, so that they, you know, if they're able to sire a child, if you will. And then there is since there's sexualization, and sexualization focuses on the messages that we receive about our sexuality, about our womanhood and our manhood. It includes media messages, definitely social media, but it also includes sexual harassment, rape, incest, some of the more darker aspects, if you will, of the sexualization of us as individuals. And what Dr. Daly recognized is that all of these circles work in concert with one another to create the whole person. So that is why Prowl the Lab utilizes the five circles of sexuality along with our proprietary Prowl the Lab method, as well as our Prowl the Lab equation, which allows clinicians to quantify the sexual dysfunction or the sexual obstacles that don't do it. The sexual obstacles that we may feel. I mean, he he heard the garage, so he's acted up. But you know, um, that we are able to um overcome many of these obstacles, they come together and they converge to create the whole person, you know, who we love, who we are, our ability to love ourselves, our ability to move beyond the harmful messages that we are inundated with every day. And we focus on how those circles work together to provide the optimal bounty of healing that you could possibly achieve given health challenges that many of us are faced with every day. And when I looked at these five circles of sexuality, it is critical to understand that this framework transforms healing by helping people understand all the different components that come together to create your womanhood, your manhood, and for those individuals who find themselves as somewhere in between, all of those things come together to identify who you see yourself as in terms of your person, your individual self, as you look back at yourself in the mirror every day and as you move through life every day. So these five circles of sexuality are very important, and it encourages both survivors and care providers to address sexuality beyond just sexual wellness or sexual activity to encompass every aspect of who we are instead of just a narrow view of object A fits into slot B to achieve, you know, sensation C. That is a very outdated um view, if you will, of sexual wellness and sexual education. Sexuality incorporates the totality of who you are as a person and how that person has been impacted by a cancer diagnosis, by a chronic illness diagnosis, and it allows clinicians in a multidisciplinary factorial way to be able to treat the whole person instead of merely focusing on just the diagnosis.

SPEAKER_01 1:02:44

And so with that being, no, no, no, no, you did wonderful. And with that being said, what I do want to say, well, first of all, I want to ask you, what's next on your agenda?

What’s Next And Practical Resources

SPEAKER_00 1:02:56

Oh Lord. Well, sleep. No, I'm joking. Um, you know, I plan on taking over the world. Um, but no, um, I have been working for the last several months to create a sexual wellness library for Proud the Lab. And that is something that I am extremely proud of. And what sets Proud the Lab apart from many sexual wellness programs or many sexual wellness frameworks is that we try very hard to move beyond the basics, we go beyond the mechanics, and we want to inject the enjoyment, the exploration, the fun, the you know, multifactorial points of sensation that the body can achieve. We want to get back to romance. We want to get back to those times where we had butterflies in our stomach and we were giddy. Because one of the things that we talked about before is that cancer is a thief, and one of the things that it can take from you is your sense of self, your ability to feel sexy, to feel beautiful, to feel vibrant, to feel alive. So many women that I speak with, one of the first things they think about when they're diagnosed is death, and they are locked within that mindset for such a long time, and it's so difficult to break free from those chains, if you will. And so it is so important that we find the joy in life, that we find the beauty and the excitement in life, and that is what Prow the Lab is trying to inject, or what we work very hard, and I believe that we are absolutely successful in injecting back into sexual wellness. The three guides that are currently available right now are understanding your body's new pleasure map for women who have lost sensation or who have alterations in sensation in their breasts. We focus on eight other erogenous zones where you're able to possibly be able to replicate some of that joy that you may have lost if there has been damage to the nipples or the nerves within the breast. There is also 69 affirmations for self-love, for seeking and enjoying pleasure, and for shared connections, so that every day or every evening you're able to internalize your mission to find the joy, to find the excitement, and to find the beauty, even in the obstacles that you may be facing every day. And then the last one that we have is nerve and nuance, and it's a sensory plan. Guide for individuals and couples, and we have, I believe, it's seven different types of sensory play that you all can that you and your partner can enjoy so that you're understanding that there are more sensations to your body than many of us learned to discover after our teenage years because you know we think we know it all by the time we're in our 20s, but you know, when you're in your 40s and sometimes and you you're in your 50s, sometimes you need to be reminded of the fun and of the joy that you once had when you were first learning your body and learning about sex and sexuality and sensation and pleasure, and so that's really what we try to do, and where I believe the where I believe that we are most successful is really injecting that inside that excitement and that innovation and that fun back into sexuality and sexual wellness, you know. Um, I make the joke oftentimes that when people say, Hey, what are you doing tonight? My answer is always him, because I try to do that as much as possible. You know, it's that muscle memory again. The more, the more you're able to work that muscle, the more that muscle wants to be worked, so to speak. So we we we have a little fun, but we also know that this is something that is very serious, and this is something that many men, many women, many couples navigate every day. So we just try to do the best that we possibly can to take some of that performance anxiety off of your off of your plate and just remember to enjoy and just sink yourself into the sensations of that intimate touch between yourself and another. And beyond that, you know, I love speaking um on different panels and doing different keynote speeches and things of that sort, just to bring awareness to just how important healthy sexuality and again that incorporates sexual wellness as well, how critical that is in cancer care because, again, this is our birthright. This is not a privilege, and it's very important that we as patient advocates that we continue to beat this drum because this is not a situation that is going to disappear anytime soon. And this is something that up to 80%, they say up to 80%, but I've seen other studies that quantify that up to 90% of individuals in cancer care experience some type of sexual dysfunction. So if these are not the conversations that we are having, then we are failing patients both as advocates, both as you know, public health professionals. I do have my master's in public health and behavior health and education, and as clinicians, you know, we have to do more to support the needs of cancer patients because everyone deserves intimacy, connection, and pleasure.

SPEAKER_01 1:09:08

And so, where can someone find your information? Say they're interested in your pamphlets and your information, where can they find it and how can they follow you?

SPEAKER_00 1:09:19

Well, I am on Instagram at prowlthelab.com. I am also on Facebook. We make sure that we post there pretty regularly as well. But our website is prowlthelab.com, and on our website within our sexual wellness library, you are able to purchase our um our guides for under$10 a piece, um, to be quite honest with you. And our guides were creative for individuals as well, but our main focus is really to get these guides into the hands of clinicians so that they are able to order these guides in a way where they are not the price or the cost is not offset onto the patient. And you know, many clinicians, physicians, they can write these off as business, um, as business costs, if you will. So we try to do the best that we possibly can to ensure that we don't put these these um these prices on individuals. The sexual wellness workshops that I conduct, whether they're in person or whether they're virtual, they're free of charge right now because it's just more important for me to get the information into the hands of the women that need it, than for me to profit off of someone else's pain right now, even though I see this as my purpose and I hope to be doing this for a long time. And people keep reminding me, well, you are running a business, and yes, I am, but I also want to make sure that I'm running this business in a responsible way because I was once a patient that felt like I had nowhere to go. And I don't ever want a woman, a man, or a couple to feel as if they'll they have no options. So, you know, we would definitely love you to follow us at proudhelab.com on Instagram. I welcome you to, you know, come to our website and check us out at proudhelab.com. And again, if you are interested, you can always drop a message at Facebook and hello at proudhelab.com is our email address. So if there are any questions that you may have that you may not necessarily feel comfortable talking to your physician about or any of your clinicians, please feel free to just drop us a message and we will answer as soon as possible because we know how important these conversations are.

Closing Message On Kindness

SPEAKER_01 1:11:43

And another um resource that you can use, should you like, would you like, should you like to get in touch with Ebony is send me a DM and say, hey Sandra, you know what? I want to get in touch with her. I have some information that I want to go over with her, I have some questions. Once again, we collaborate. So where one of us can't handle something, we pass it on to the other one. And likewise in reverse. That's why it's important. If once again, if this goes off, you're listening, you're like, you know what, you go and you start thinking about it, and you're like, well, I hear it, but you know, I'm still kind of doubtful and still kind of shy about talking about that subject. Um, let me reach out to Sandra and see if she has the information. Of course, you can. I will make sure that you get in touch with Ebony and she gets in touch with you because I'm that resource person. What I do want to say before we close out for the evening is now that we've had Ebony Michelle on as our guest, now that we've had her on, now that she's spoken to you and with you and about you, she did all three. If you want to look at us, she did all three in such a professional way. And she's a young lady that's determined to make it. You can now see why she has been featured on national platforms from essence.com to the American Cancer Society and the voices of black women. You can see why. Because she's a delight to have with everything that life has thrown at her. She's told the devil on many occasions, oop, you got the wrong body, back it up. And God has made sure that he hasn't been allowed to put his hands on her to the point where she can no longer use her voice. So she's using her voice at the level of, you know, the level that she's using it at. I don't see why all of us can't be doing the same thing. It's called the patient uprising, and that's what we need to do, not to bash our providers, but to make sure that we're working with them as partners so that we can get the best health care that we can possibly get. And the only way for them to do that is to hear us not so much complain, but hear us bring up our concerns and correctly address them. And whenever you're with the provider and you're like, that's not what's happening with me, I'm just not listening. I'm whenever you get to the point where you got to bash your provider, it's time for you to move on. It is time for you to move on. Because should you choose to stay in that situation with him or her as your doctor and you as a patient, it's no longer on them. It's on you. Patients have rights and they have responsibilities. And one of those responsibilities that they have is to make sure that they are leading their health care journey. So, with that being said, I'm gonna close out this month's podcast session, and I'm gonna do what I always have done, which is tell you to be kind. If there's anything you can do that doesn't cost a dime, but brings so much joy and pleasure to everyone, is to be kind. You never know what someone is going through. You don't know what's on their mind, what kind of day they've had, what kind of week they've had, you don't know that. So it's always use your best judgment, but be kind always. And when you're being kind, think of Sandra. Sandra said, be kind. That's right. Be kind always, Ebony. Thank you. I appreciate it. Thank you.

SPEAKER_00 1:15:24

It's my pleasure. It's my pleasure. I appreciate you, little sis. Uh, anytime, anytime. I can anytime. I love this conversation. I love being here with you, Sandra. Thank you.

SPEAKER_01 1:15:35

Keep up the good work and have a good evening. Until the doggy I said thank you.

SPEAKER_00 1:15:41

Oh, here we go. No, he already no, he already has you know, too much of a complex. It's his own God complex. No, thank you. Hard pass.

SPEAKER_02 1:15:51

Have a good night, you as well.

SPEAKER_00 1:15:54

Thank you so much.