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Test Those Breasts ™️
This podcast by Jamie Vaughn is a deep-dive discussion on a myriad of breast cancer topics, such as early detection, the initial shock of diagnosis, testing/scans, treatment, loss of hair, caregiving, surgery, emotional support, and advocacy.
These episodes will include breast cancer survivors, thrivers, caregivers, surgeons, oncologists, therapists, and other specialists who can speak to many different topics.
Disclaimer: I am not a doctor and not all information in this podcast comes from qualified health care providers, therefore does not constitute medical advice. For personalized medical advice, you should reach out to one of the qualified healthcare providers interviewed on this podcast and/or seek medical advice from your own providers.
Test Those Breasts ™️
Ep. 96: The Doctor Said "Too Young" But Her Body Said Otherwise - Kommah McDowell's Story
Kommah McDowell shares her powerful journey surviving triple negative inflammatory breast cancer diagnosed at age 29 after months of doctors dismissing her symptoms as "too young for cancer." Twenty years later, she's transformed her experience into patient advocacy and authorship.
• Diagnosed with inflammatory breast cancer at 29 after multiple doctors dismissed her symptoms
• Received a 5% survival rate prognosis, showing how inflammatory breast cancer often gets diagnosed late
• Experienced medical gaslighting when symptoms including pain, redness, and breast growth were repeatedly dismissed
• Got married during treatment when she was bald and could barely walk
• Told she couldn't have children but experienced a "miracle pregnancy" between periods of treatment-induced menopause
• Founded a nonprofit to help cancer patients afford transportation to treatment and basic necessities
• Now an author of two books and professional speaker after celebrating 20 years of survival
• Emphasizes the importance of knowing your body, trusting yourself, and fighting to be heard
• Stresses that second opinions can be lifesaving, even with trusted doctors
If you're experiencing unusual symptoms, trust yourself. Know your body, and always fight to be heard. Remember that second opinions could be a matter of life or death, even if you trust your doctor.
Connect with Kommah:
http://linkedin.com/in/kommah-m-951662199
Instagram: @KommahMcDowell
Resources:
Silver Lining: Cancer was the best worst thing that ever happened to me. https://a.co/d/4VbMZz6
String of Pearls: Seeking God’s intentionality in our lives.
https://a.co/d/9X7d4Cx
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Where to find Jamie:
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Jamie Vaughn in the News!
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I am not a doctor and not all information in this podcast comes from qualified healthcare providers, therefore may not constitute medical advice. For personalized medical advice, you should reach out to one of the qualified healthcare providers interviewed on this podcast and/or seek medical advice from your own providers .
Hello friends, welcome back to the Test those Breasts podcast. I am your host, jamie Vaughn. I'm a retired teacher of 20 years and a breast cancer thriver turned staunch, unapologetic, loud supporter and advocate for others, bringing education and awareness through a myriad of medical experts, therapists, caregivers and other survivors. A breast cancer diagnosis is incredibly overwhelming, with the mounds of information out there, and other survivors A breast cancer diagnosis is incredibly overwhelming, with the mounds of information out there, especially on Dr Google. I get it. I'm not a doctor and I know how important it is to uncover accurate information, which is my ongoing mission through my nonprofit. The podcast includes personal stories and opinions from breast cancer survivors and professional physicians, providing the most up-to-date information. At the time of recording Evidence, research and practices are always changing, so please check the date of the recording and always refer to your medical professionals for the most up-to-date information. I hope you find this podcast a source of inspiration and support from my guests. Their contact information is in the show notes, so please feel free to reach out to them. We have an enormous breast cancer community ready to support you in so many ways.
Speaker 1:Now let's listen to the next episode of Test those Breasts. Well, hello, friends, Welcome back to this episode of Test those Breasts. I am your host, jamie Vaughn, and today I am super thrilled to have my breasty breast cancer friend that I met on LinkedIn last January. Her name is Koma McDowell and Koma is a passionate patient advocate, speaker and healthcare leader dedicated to empowering patients and advancing cancer care. A survivor of triple negative inflammatory breast cancer, she serves as a national patient speaker for City of Hope, with past roles in major research initiatives and advocacy organizations Featured in Oprah Magazine, forbes Books Radio and the Los Angeles Times. Como holds a Master's of Science in Leadership and Management, is an inspirational keynote speaker and the author of Silver Lining Cancer Was the Best Worst Thing that Ever Happened to Me and String of Pearl pearls 10 week devotional. Residing in San Diego County with her husband and son, she continues to inspire and lead in the fight for patient centered care. Hello, finally, koma we got this going on, I know.
Speaker 2:So glad to be here.
Speaker 1:So excited Me too. I um my audience knows that I took a little hiatus starting back in February. I had been, you know, releasing a podcast episode every week like clockwork, since June of 2023. And last February I had to forgive myself and put it aside for a minute. And I'm back, and I'm just so thrilled that you and I are still connected. We met on LinkedIn. You were with another company at the time, but I really wanted to interview you because of your backstory, of course, of breast cancer and your advocacy work. How are you doing? What's going on with you?
Speaker 2:You know I'm great and I'm so proud of you for taking time for you and realizing let me stop and pause to make sure you stay healthy and strong so that you can, you know, push on and then continue, pick up the advocacy work that you're doing. So I want to just say well done, my friend.
Speaker 1:Well, thank you, I know it's really hard for especially women. It seems like it's really hard for us to put things aside and just recognize that. You know it's okay. And you know I had a friend of mine that said look, you know, Jamie, netflix has series and they take, they take breaks, they have seasons and it's okay for you to have a season, you know, and so, but I will tell you that this is where I shine in a lot of different ways, not just doing podcasting. I'm not a pro or anything like that. I just really thoroughly enjoy having conversations with people like you and you know, amplifying what it is that people are doing in their survivorship, and interviewing doctors and, you know, therapists, you know. So it just it's where it's where I feel best, and so right now I'm pretty happy about that.
Speaker 2:All right Now. That's exciting, like that resonates with me so much. Currently, I am now celebrating 20 years of survival this year Wow, which is amazing. So, knowing my story and to know that I'm here I'm 49 years old I'm not ashamed to tell anybody that because I was told I may not see 30. So to stand here now at 49 years old, I am ecstatic about that, and so at this point in my life, I'm trying to get back into advocacy in a way that is different than when I was first diagnosed.
Speaker 2:When I was first diagnosed, you know you're beating the ground and the streets trying to just make people pay attention. My story, when we we go into that, is a lot about being seen and being heard as a young woman diagnosed with breast cancer and, excuse me, before I was diagnosed, as a woman with symptoms of breast cancer that were ignored, and so I came out of treatment with this passion to just, you know, knock on every door and let everybody know. Well, now, 20 years later, I've moved into a different phase and season and I'm more into advocacy. Where I'm working with, in the research realm, I'm working with policy, I'm working with just trying to approach it in a different manner only because I've been around for a little while and I've been through a few more things and just maturity in in the process and understanding how things are working and trying to really make small movements that make huge impacts right, and so I am now and I'm I'll we're just gonna jump into my story. Sorry, so I was gonna ask.
Speaker 1:I mean, this is really interesting to me because you were 29 years old when you were diagnosed, and it's interesting because I just interviewed someone who was also, I believe she was 29 years old and it was either 27 or 29. 27 or 29. And the story of people who are young it's such a myth that only older people can get breast cancer. I mean, yes, I was 54, right, it's usually around when you're in your 50s, right or more. But more and more there just seems to be younger women getting breast cancer, and that must have been so frustrating telling people and having to advocate for yourself at such a young age. So what I want to ask you is before you were diagnosed, who were you? What made you be able to speak out? Start speaking out. Who was Koma before that?
Speaker 2:Well, so funny because I've always been one who. I'm a people person, so that's one thing, but I'm very much. People say you're going to be a lawyer because you just go after things and you just keep digging, you're resourceful, you get it done. And so I have this drive in me. And when I was younger I'm like, why do I have this drive? For some people it could be too much, because they're like you can bulldoze your way through things, but I have this natural drive to just get things done. If it's a task, I'll get it done. By hook or by crook, I get it done done. If it's a task, I'll get it done by hook or by crook, I get it done.
Speaker 2:And coming up through school I got involved in speech clubs and debate clubs and I learned that, oh, I actually can speak well in front of people, I'm not afraid of audiences. So then I started doing that and I fell in love with the stage in that regard. And so before cancer I was on this career path. I did not want to be a lawyer, but I did want to work in corporate America and I wanted to be in a position that would allow for me to just engage with people, be around people. So not so much behind the computer, but and I didn't really even know because I was still too young to even sort all of that out at the time.
Speaker 2:But I went to school for my master's in leadership and management. I chose that over an MBA and so I had this drive and desire to engage, be a part, be with people, community, build relationship. And so that was me before I was just driven, I was career focused. I did not want children, I was dating, but I was career focused. I was just driven to succeed, if you will, in this career world. I want to call it a rat race, but that was me and everyone who knew me. They're just like oh, she's go, go, go, she's about business. And so that was my life before cancer.
Speaker 1:So then you turned 29. Tell me, walk us through what the symptoms were that you know. You were just like OK, something's not right, what's going on?
Speaker 2:there Right. So, coming out of Christmas, I was 28. We were coming off of Christmas and heading into New Year's and I found something under my right arm and I was like this feels a little funny and it was just a little nodule, like a marble, and so I went to the doctor to ask questions about it and I had a female primary doctor at the time and she was like, oh, you're fine, it's nothing, it's just a cyst. And I was like, okay, fine, so I left the doctor. I was great. Then the next week, all of a sudden I had something else. It was hurting and I was like I'm uncomfortable, what is this? She was like it's okay, it's a cyst. And I'm like okay. So then the next week it's hurting a little more and now I'm feeling more like a sharpness and then there's like this thickness coming in and I'm like, okay, this is not normal, what is this? And she's like it's okay. Now, mind you, I'm going back to the doctor every time asking the questions. So then finally we're in the middle of January, a couple of weeks into January, and I go back and I say, look, my nipple is starting to like invert and that's not normal, like what's happening. I'm in pain, I feel this thickness. And she was like it's okay, it's your hormones, you're young, you're too young to have cancer, so don't worry about it. And I said well, can I get an MRI and not an MRI, I'm sorry, a mammogram. And at 29, they're not giving you a mammogram at 29.
Speaker 2:There is backstory there For me to even to have known to ask for that really quick. Before that, I was temping when I was going to college for my undergrad. I would come home for the summer and I'd tent at USC Norris and at City of Hope and in my time tenting there, those were both cancer research institutions. One of the things that I learned from them was cancer doesn't discriminate, and so if you find yourself in a position and you want to know, and you need to know, you need to ask for certain tests. And so I knew about mammograms as a result of my experience there. So that's my backstory.
Speaker 2:So now fast forward. I asked this doctor at 29, can I get I was actually 28, can I get a mammogram to verify what you're saying? And she was like no. Well, I also learned back then that you should have PPO insurance, which is a policy that allows for me to make choices, and so I was like, okay. So when I got my first job which I had, I got PPO insurance, which I didn't even understand what that meant. But when it came down to this, I said I want a mammogram and my insurance allowed me to get a mammogram and my insurance allowed me to get a mammogram. Mammogram came back fuzzy and she said, well, it's fuzzy, it's a little fuzzy, it's fine, there's no mass, you don't have cancer. So I was like, okay. So then I said, well, can we get an ultrasound? Because by the time the results came back from the mammogram, my right breast started growing. So now I have pain, I have thickness, I have pain, I have thickness.
Speaker 2:I have growth, I have an inverted nipple, all the signs, yes, and she's still telling me there's nothing wrong with me because I'm too young to have cancer. And so I said, okay, can I get a mammogram? They get to the man, I mean the ultrasound. So we do the ultrasound and then that comes back fuzzy too. And I'm like and then that comes back fuzzy too. And I'm like, what does this fuzzy mean? Like how is that a diagnosis or a prognosis or anything? And so I was like, okay, that's not enough. And she says, fine, we'll do a needle aspiration biopsy. And I said, okay, what is that? And she was like, that's okay, we're just going to do it. It's really quick. Now, mind you, this is sitting in the doctor's office. She's frustrated with me because these two tests have come back basically inconclusive for her fuzzy keyword. And now I'm still asking for her to do something. So she's like, fine, we'll do a needle aspiration biopsy. And I'm like, okay, she walks out the room and comes back in with a needle to do the biopsy. No prep, no, I'm about to do this for you. No, lead, nothing. She just walked out and came back in with a needle and I was like, oh, my gosh, oh, we're about to do this. So she does a needle aspiration biopsy and she pulls back. She goes to pull back the needle and nothing happens and she goes, huh. And I said, well, what does mean? And she was like oh, nothing, it's okay, you don't have cancer, you're too young to have cancer. And I said that just didn't sit well with me, so she sent me on my way.
Speaker 2:Way I left, my bright breast continued to grow, I became in more pain, it started, the skin texture started turning red and changing, so all the signs of inflammatory breast cancer. So that's happening. And then a golf size lump. Well, it wasn't a golf size at the time, but a lump started developing under my arm and I couldn't even put my arm down. And I went back again and I said you know what? I can't put my arm down, my nipples inverting my skin color, and you see my complexion, my chest was red and I said this isn't normal. Does your breast do this? Because she's a female? And she was like well, no, and I said well, can you then do me a favor? And this is after seven, six months?
Speaker 2:Take out what is not wrong with me then, because by the time we got here, my right wrist was double the size of my left and I had all these symptoms and I was in excruciating pain and I said just remove them. What's not wrong with me, since you don't think it's cancer, since you think it's my hormones. If something is growing, you should be able to take it out. And I went to see a surgeon. The surgeon agreed with her. He agreed there was nothing wrong with me. He reviewed the ultrasound, he reviewed the mammogram and he agreed there was nothing wrong with me. And I said well, I don't care, you guys don't have to ever see me again, but I've come too far to start over. So just remove whatever's not wrong with me and I'll get out of your hair. And so they were like fine, but if we go in, we're not talking about this afterwards, if there's nothing in there. And I'm like, wow, okay, I'm your patient, right, okay, but whatever, and I'm 29. I'm just trying to get help.
Speaker 2:So the surgeon goes in and on July 13th, surgeon goes in, he opens my breasts and he's like blown away by what he sees and he closed me up. He goes into the waiting room and my mom and my fiance at the time was there and he said I've never seen this before and they said I think it's cancer, but I've never seen it before, we're going to send it out for pathology. And so for two days they set on knowing that I could have cancer without telling me. And on July 15th I went back for my appointment. This doctor cleared his whole schedule and we waited like two hours to see him because he was trying to get rid of all his patients because he wanted to tell me that I had breast cancer. But he was ready to take care of it now and he was willing to operate to take care of it now.
Speaker 2:And I said, okay, had to process it. And I said you didn't believe me and you want me to trust you to remove something you don't even know what it is. I'm like, no, I can't do that, I can't do that. And I remember laying on that table and the nurse she was so sweet, she said you could always get a second opinion. And I thought that's right and I said pack my stuff up, I'm going to go get a second opinion. And that second opinion saved my life. This doctor was diagnosing me. In my records he diagnosed me with DCIS and he said it was negative. But he did not understand triple negative. He just knew it was negative to hormones and his recommended treatment for me was a lumpectomy after receiving radiation treatment, and that's what he was going to do for me starting that day.
Speaker 1:I you know, boy, how maddening I mean. First of all, let's go back to what your doctor said every time you came in there and it was painful and she kept telling you it's okay, it's just a cyst you're too young but I but that that it's okay.
Speaker 1:That part really bothers me because you were in pain, right. So that part, if it's a cyst, okay, fine, right, but you were in pain and that part is not okay. And that that's what sticks out to me from the very beginning, is that she blew you off saying that it's okay, even though you were in pain every time you came in there, even though you were in pain every time you came in there, right, that is, I just feel like that is so and, as a doctor, if I'm in pain, aren't you looking to figure out what the source of the pain is?
Speaker 2:Yeah, At least be curious. If she was just curious, if she was just even at all curious as to, well, why is her breast doing that? Even if she didn't know well, why is her breast doing that? Even if she didn't know well, why is her? Her is growing now. Well, that's interesting. The skin did get thicker, Like I was there literally every two weeks. So it's not as if she saw me in January and then saw me again in April, but she saw me multiple times in January, multiple times in February, multiple times. She saw the progression, but she was never curious to what was happening.
Speaker 1:That blows my mind. Had you known well? I mean, of course now we know what kind of doctor she was. But had you thought about it before you went to the surgeon and had the nurse tell you, you know, when he was going to take it out? And the nurse told you that you know when he was going to take it out and the nurse told you that you could get a second opinion? You could have done a second opinion way back before, right? I mean, I kept thinking to myself why was she? Why are you keeping on going to this doctor? You know? But here's the thing when we're younger like that, I mean you happen to be lucky enough that you had been working for City of Hope and you know, in that space, you know so that you had these buzzwords if you will or you know, mammogram, ultrasound, if you see anything abnormal you had that knowledge.
Speaker 1:So many other people don't have that knowledge so they would never have known to really necessarily ask for a mammogram or an ultrasound. But I just feel like, had you thought about it with, because most people when they go to their doctor, they're like you want to trust them, right, because they're doctors, and but at that time you had one that you really couldn't trust and luckily you had a voice and that you kept on going in. So that's something that I want my audience, who's who have, who's never been diagnosed because that's who I try to really reach are those people who have never been diagnosed at any age to hear you on this, because it's so important to speak up and to recognize the signs and to recognize that it is okay for you to question your doctor and it is okay to ask for a second and third and fourth opinion, absolutely.
Speaker 2:Absolutely, and here's the thing. So I think about that now. Okay, 20 years later, how long would I today entertain this doctor? I would have been gone.
Speaker 1:But I know better.
Speaker 2:Right, but I know better. Right, but at 29 I had just gotten on to my own insurance policy and I was going to the doctor. I didn't have my mom with me going to the doctor, I was just coming off of trying to be stand on my own little two feet at the job. So you really don't know to switch the doctor right away, you, you didn't. There's just a lot. You just don't know to switch the doctor right away, you didn't. There's just a lot. You just don't know because you haven't lived long enough to know it.
Speaker 2:And the one thing I did know was I did not want to have to start over with somebody else. And so that's what I think kept driving me to if I show up enough persistence, if I show up enough, you're going to do something about it. And if I didn't know anything else, I knew that if I just kept showing up, eventually you're going to get tired of me and you're going to do something about it. And she literally walked in the room one time and saw me and was like oh, literally. And I said I don't even care if you're disgusted with me, that did not phase me, do something about my situation. And literally this lady probably could not stand the looks of me at all because I kept coming back.
Speaker 2:But in my mind, when I was a kid, when I got sick, you go to the doctor, they give you medicine and you get better. That's what I know. I don't know what my mom would do. I don't know what she talked about. That's what I knew. And so now, as a young adult, I'm going to the doctor for answers. You're supposed to be able to give me some answers to help me, so that I can figure out what to do next. And that wasn't the case. She didn't know. And I'm not even mad that she didn't know about it, I'm more. My feelings were hurt because she didn't even care, she wasn't even curious and because of my age, she completely dismissed me. And I just think how do you sleep at night when you would literally dismiss someone, despite what you see is not normal? She saw, she touched it, it's nothing normal about my situation, and yet she still labeled me too young and that, for her, was enough. And that's what's frustrating.
Speaker 1:Was she older than you? I mean, I mean, of course she was.
Speaker 2:Oh, she was probably she was probably like in her early, early fifties, late forties, early fifties, so she wasn't older than you, the authority and she, probably she.
Speaker 1:she had that kind of power trip, so did she? Did you ever go back to her and tell her?
Speaker 2:oh, she ended up. We ended up trying to file suit um for her, but we couldn't because I lived, and so they ended up firing her or letting her go from the facility that I was at. Oh, and then she ended up opening her own practice. So I didn't know that and I was like you know.
Speaker 1:But she knows.
Speaker 2:She knows, she knows and the surgeon knew. The beautiful thing about the surgeon was after the fact. He actually reached back to me and he apologized and he said he has changed. He changed the way in which he treats and engages with his patients. Because of that experience he said I listen to them now because he had no idea what impact he had. And then, in return, my experience had such an impact on him and every patient thereafter he's like I listen to my patients now, I talk to them, I understand them, I take in what they're saying into consideration and that blessed me so much Because just think, when you're hurting and you're sick, you just want to be heard.
Speaker 2:I need you to hear where I'm coming from so that we can figure out what to do next. You don't have to have all the answers, but care enough about me to know I'm having pain and let's try to figure it out together, trying to figure it out together. And I actually saw him a couple of times afterwards at that, because it was a smaller clinic and I went back to see him and I would go back and visit him and say hi and everything, because I appreciated the fact that he owned it and he apologized and he was genuine about it, and so that was great. That's powerful, that's very powerful, that's so powerful, right, as opposed to the doctor. I don't know where she's at and I had to make myself not even think about her and just continue to live my life, because some people say, oh, could you find her? I even forgot her name. I needed to forget her name because I couldn't do it and I needed to make sure my mental health was good so that I could fight and do what I need to do.
Speaker 1:Right. It's amazing how people some people just can't apologize or, you know, take ownership of it. That surgeon is to be commended for sure. That impacted his life big time.
Speaker 2:Agreed. And back to the surgeon. You know he wasn't an oncologist, so his plan to treat me was from his experience, and I'm sure he consulted a few people, or whatever it may have been, I don't know. But his plan would have killed me and he wouldn't have even realized that, because with inflammatory breast cancer, first of all radiation, no chemo. He did not recommend chemo, and with inflammatory breast cancer, that's a death sentence.
Speaker 2:And I ended up getting diagnosed with late stage triple negative inflammatory breast cancer. I had to undergo chemotherapy, I had to have a radical right mastectomy and then I had to have radiation. I followed up with another mastectomy on my left side and I mean I have had over 10 surgeries and his original treatment plan for me was a lumpectomy radiation and then a lumpectomy and she'll be fine. Yeah, the second opinion literally saved my life because he just didn't know. Because he just didn't know, and I think after he discovered that I had cancer he was trying to make good on the fact that he too dismissed me. So I think his intentions were pure. It's just the treatment was wrong, right he?
Speaker 1:didn't know, he didn't know, so had your doctor have you know? Had she taken it seriously, I wonder what stage you would have been oh, oh, um, I have all the sizes.
Speaker 2:I would have been like stage one inflammatory breast cancer at stage one. No one gets diagnosed at stage one and for inflammatory breast cancer because, that's insane don't they call that.
Speaker 1:It's a silent killer. The silent, yeah, I, because that part I mean. You said that you know there might have been a lawsuit, but you lived. Thankfully that you lived. I'll take it, but gosh darn it. This is what we need people to do, is when they're going to get breast cancer, because it's a pretty good chance that people will get breast cancer with the statistics that are out there one in eight women, right, and more younger women are getting it. The idea is to get it at stage zero, hopefully, right, Right, but has she taken you seriously? And how does she sleep at night, you know, knowing that it could have been way earlier than what ended up happening? I'm really glad you went through that.
Speaker 2:You know everything for a purpose Because, honestly, when I go back and look at my medical records because I had to was so small that that would have been a great foundation for study, for research to be able to figure out. I went to City of Hope to get my treatment. The history of inflammatory breast cancer, like the percentage of survival, changed from 1% to 5% between I think it was between 2003 and 2005. So the survival rate was only 1% at first because they weren't detecting it, because it didn't have a mass. It wasn't on the ultrasounds and mammogram as a mass, because of how it grows, it starts in the skin and it moves inward, so doctors were missing it. By the time I was diagnosed, the survival rate was up to 5% and so I had a 5% chance of surviving, something that they were still trying to figure out.
Speaker 2:Where's this thing coming from and how was it starting? And I had all of the symptoms present. Like that would have been incredible information for research, for studying the life of inflammatory breast cancer. How does? How is it starting? What does it look like? You know, how can we figure out what, how to treat it or or catch it, whatever the case may be, because I don't know anybody, I've not met anyone who has been diagnosed prior to stage three. Everyone that I know has come in after stage three and that by that time they've already fought, they've already gone to the doctor, they've had the mammograms, they've gone through the ultrasounds and all of that and nothing. Nothing was a red flag for the doctor. And then finally it's like, oh my gosh, this is something. And then they discover it and by that time they're stage three, b Right, that's scary.
Speaker 2:So, and mine was in my lymph nodes. It was in my lymph nodes and it had gone outside of my lymph nodes, which I was originally diagnosed at stage four, but it did not spread, which thank God. It did not spread, so they were able to get all the cancer cells out. They took my lymph nodes out and I had no evidence of disease, but by that time that was seven months later. Actually, no, I had that surgery back in December. So I was like they found the cancer in July. I didn't have the full surgery till December, but I started chemo in August. So it's crazy, wow.
Speaker 1:I'm just blown away. I was just still just reeling about that doctor and that's scary that it's hard to be detected Like there's nothing. That seems to be a red flag until it's a lot later down the road. I just seems to be a red flag until it's a lot later down the road.
Speaker 2:I just so did. You say you do not have a family history? I don't, I don't, I don't have a family history. I was tested for the BRCA test and I actually tested for that twice. So when I was first diagnosed, they tested to see if I carried any genes the genes for inflammatory or breast cancer or whatever BRCA test. And then I actually retested, because technology has advanced since then and science has advanced and I retested about five years ago and still nothing.
Speaker 1:So, okay, I want to get into something here. First of all, we're going to talk about infertility, because that is something that you had. Some challenges, yes, yes.
Speaker 2:Can you share with us what the challenges were and are so well, when I was diagnosed? Well, so after I was diagnosed and I started treatment, I was told I would not be able to have children because the treatment was so body stayed in menopause, as most people do. And they say typically your body will come out of menopause after a certain time. And so my husband and I were like you know what. So I was engaged before getting diagnosed. I got married in the middle of treatment. My husband married me bald and all, and so that's a whole other story. And so then I was told not to have children, at least for the first couple of years, because if they did and the cancer came back, it would come back more aggressive than the first round. So we were like, fine, we won't do that. But I was also told I wouldn't be able to have children. So they were trying to protect me from having to have an accidental pregnancy. So my husband and I decided you know, we'll just adopt, we're not even going to worry about it, I want to live and be with him and we'll figure it out. And we figured God would work it all out. We weren't going to worry about it, and so for us fortunately, we stuck to the plan.
Speaker 2:I was able to get through treatment and wait a couple of years till treatment was completed, and then almost to the date of when they told me if I did get pregnant this would be ideal. My body had been in menopause the whole time, and then it came out of menopause and then we were like, oh okay, that's interesting. I ended up getting pregnant, to the day almost, it seems like I had my son. I was able to carry him full term, and then, after I had him, my body went back into menopause and I've been in menopause since, and so I was in menopause starting at 29. I came out at about 32. Yeah, into 31. And then I got pregnant, had him, and then I got pregnant, had him, and then my body's been in menopause since I was 33, and so he's our miracle child.
Speaker 2:We were of the mindset that we would not have any children. The, the treatment was going to make me infertile, and adoption was our, our plan, not even our backup plan. It ended up being our first plan and, fortunately for us, we were able to have a son, and I was only able to have one kid. My body went into menopause and never came back out. And so that's our journey with our son, and just even with the aggressive treatment, having the opportunity to be able to carry him, carry him full term has been such a blessing for us. Yeah, that's our journey, with trying to face what to do.
Speaker 1:Yeah, yeah, miracle, it's like menopause. Yes, he is. Oh gosh, what a story Right. What a story. Well, I you know. I would really like to know what you're doing right now, like in your survivorship. What are you doing? Who was coma now?
Speaker 2:Oh man, this lady is crazy. So now that I am, I um on the other side, I started when I first got diagnosed. Even before our son, I started a nonprofit organization to help people going through cancer treatment. I wanted to give back. Like I said, I was beating the ground. I was making friends with any and everybody, trying to figure out how do I help people in treatment so that, for one, they could advocate for themselves and, for two, that they can afford to get through treatment.
Speaker 2:One of the things I experienced when I was going through treatment was sitting in waiting rooms with people who could not afford to actually get treatment, and not so much as the actual treatment, but they couldn't afford the gas to get there. They couldn't afford the food to feed their family treatment, but they couldn't afford the gas to get there. They couldn't afford the food to feed their family. They couldn't afford the water, bottled water or snacks. When they were in there, I mean, I couldn't believe it. For me I had an army of people, my fiance he was my fiance at the time. He literally had a list of people and rotations tagging in and out and meals prepped and people brought me clothes. I didn't want for anything, and I sat in rooms with people who had nothing, and so we started the organization for those individuals who needed help just to get through treatment, and all I could think of was you should not have to choose to die because you can't afford to live. And I sat next to a mama who was trying to figure out if she was going to go to her next treatment or if she was going to buy groceries for her kids and make sure they had school clothes, and I was like she should not have to make that choice. That's not right. And so we had this organization and although I had breast cancer inflammatory breast cancer it was actually called Comocerate Inflammatory Breast Cancer Foundation. That's a mouthful.
Speaker 2:It was meant to be a legacy for me, because the one thing we hadn't touched here was I was only given a two-year survival rate, a 5% chance to survive two years. So this was our way of giving back and it was supposed to be a legacy project for my family once I passed on, and so the hope was I would lead it and then, when I passed away, they would carry it on. Fortunately, I'm still here and I was able I was able to be the executive director of it, founder and executive director of it. For we had it for nine years and we just helped thousands of people just get through treatment, and it didn't matter what cancer they had. There's no right cancer. Feeding your kids and making sure you can get to or from treatment was our priority. So I did that for nine years.
Speaker 2:Then I realized my son was my priority and so I had to take a sabbatical and I stepped back because I was out speaking and I was traveling the country and I was loving every moment of it. But I was missing my son grow up and this was my miracle child and this. It made no sense that I was out there in front of everybody else and all he saw was the back of my head. So, with that being the case, I took my son and was at PTA and I was at everything for him. Well, now he's 16 and he is like mom, you can go ahead and jump back into what you love, and so with that, I'm back. I'm back trying to figure out where are we now in this fight against cancer and advocating and empowering people.
Speaker 2:I wrote two books. One is Silver Lining. Like you mentioned, cancer was the best, worst thing that ever happened to me, because it really did change my life for the better. It was the hardest thing I've ever done in my life, but it changed it for the better, and so that is my memoir, that's my story, and it also talks about we did a tip to adopt and our failed adoption and on the different journeys we've been through. And then I did a devotional book as well for the busy woman, because I'm just busy but I do need time for my devotions, and so I've written those books. I'm out speaking again. I'm doing keynotes. I'm out speaking again, I'm doing keynotes, I'm facilitating events and just trying to get back into the community, to be back with the people, where I originally started, where I felt I have a natural place and a comfortable position in is within the community, helping, advocating, supporting, being resourceful. Helping, advocating, supporting, being resourceful and, yeah, just really living life and not not missing life.
Speaker 1:I love that Because we can miss it. Yes, and I don't want to miss it. I love that. And I love that. Your husband, obviously, he loved you so much and you got married and when you were bald and that must have been so cute Tell me, did you? Did you do you have like? Did you get married bald, or did you have like a wig or a turban or what? Tell me all the things.
Speaker 2:So I had a wig. I had a friend of mine, she actually had a wig line and so she brought me a wig. I had a long flowy wig, but we do have pictures where I was bald before, like in the dress and ready because it was between treatments, because it was already planned before I got diagnosed and everyone thought we would cancel. And we didn't want to cancel it, and you weren't going to get a refund back, and the only challenge we had was I couldn't walk. I was bedridden through treatment, so I would go into treatment and then I would be wheeled out and I would be down for two weeks and then I would walk the day before treatment right back into treatment and I'm down. So that was my treatment cycle. And so the challenge was how am I going to get married when I can't walk? And so, and of course, we picked our location before we got married. It had six staircases leading to where we're supposed to get married. Isn't that fun?
Speaker 2:And so the plan was, for I had my cousins and brother-in-law who were going to carry me down. They were going to take turns carrying me down these flights of stairs so that I could get to the altar where we were getting married and I refused for that to happen and fortunately the Lord is good I was able to walk that day and I made it down every stair. I was wiped out by the end of the night but I did it in my own strength and we sat down and got married, seated, because I couldn't stand, but I still walked and that was amazing. But I did have a long Floyd wig on, although I was bald and it was just. It was amazing. He, he is my soulmate and he I mean he he committed to those vows before he even said I do. And he was like as long as I have you, I have you. You need to know that. And and now we're actually going to be celebrating 20 years in October.
Speaker 1:Oh, very nice. We just had our 20 year in June.
Speaker 1:Oh yay, yes, yeah, and that's the other thing is that you know, like I was diagnosed when I was 54, we had been married, we were just about to have our 17th wedding anniversary. So you know, you are once again the second person in the last couple of weeks that I spoke to who was either she had only she had been married for a year, so very, very new. And I told her I said so like he was like well, you were really serious and sickness and health Right. And then, yeah, one year after she was married, she got her cancer and she was about your age. Yeah, very interesting.
Speaker 2:I think I saw him in the background.
Speaker 1:Is that the, the amazing man?
Speaker 2:Yep, that's him. He walked right through the camera. I was like trying to turn the computer.
Speaker 1:Tell him that I just think that's amazing and I I think it's great how much you do in your survivorship and and your you know forethought on how you wanted to make sure that you didn't miss your son growing up, and you know, I mean again, that's one of the things that we have to recognize that if we need to take a break from something so that we can do something that's more important and at least take care of our health.
Speaker 1:That's such good, good stuff there. So I have your and I'm going to ask you one more question before we disconnect, but I've got all of your contact information here. And then I have your book, your book link and Strings of Pearl Seeking God's intentionality in our lives.
Speaker 2:For your life.
Speaker 1:Yes, that's great. So is there a big piece of advice? And I kind of feel like you've given us so much advice anyway, but what kind of big piece of advice can you give for people who've never been diagnosed?
Speaker 2:Okay, that's good. I actually thought about this and I actually wrote something down, and so here's what I got. I'm going to read it because this is how I was feeling Know your body, trust yourself and always fight to be heard. Also, second opinions could be a matter of life or death for you. Even if we trust the doctor who makes the diagnosis In my case I did not but even if you do trust the doctor that makes the diagnosis, that doesn't mean they fully understand the treatment plan for that diagnosis.
Speaker 2:So you need to know, you need to know, you need to know yourself, but you need to trust that it is okay to seek the help you need outside of the immediate environment you're in. Oftentimes people get diagnosed and they want to move now and they're so afraid that they're going to lose time. But in so many cases that I know so many people who had to get second opinions and I'm not just even cancer I know people who are getting second opinions my friend of mine, little girl. They misdiagnosed her and they sought a second opinion and thank God they did, because they saved that little girl's life. It's okay. We do have time to stop and breathe and to figure out what is actually going on.
Speaker 1:That is fantastic advice to this who this resonates with, because we never know who we're going to be touching when they are listening to these episodes, or any other podcast for that matter. I feel like I want to let my audience know that they can reach out to me, they can reach out to you if they need the courage, the words. You know what to say to their doctor when they're asking when they're telling them that they're going to get a second opinion, and it's that key word. It's not asking it's telling them and it's not.
Speaker 1:It's not that you are being a jerk or anything like that. It's like this is your body and you get to take care of your body in the way that you feel that you need, because, especially if you feel something that doesn't feel right.
Speaker 2:And a confident doctor, the doctors that I've engaged with in my advocacy work and personally now. A confident doctor is not intimidated by a second opinion.
Speaker 1:They're not I completely agree and I have experienced that myself and I've interviewed a lot of people who would say the same thing, and you're absolutely right. So all you doctors out there be confident.
Speaker 2:Yes, we love you, we need you. Be confident, but let's not be afraid of reassuring that this person's life is that'll last a little longer.
Speaker 1:Yeah Well, you have such an amazing story, so inspirational, and you are doing so much in your survivorship. You seem to have a wonderful life, you're a beautiful woman and I'm so happy you're alive, thank, you, that is a miracle in itself and I just really appreciate your being here to have this conversation with me. Is there anything else you'd like to say before we disconnect?
Speaker 2:You know, jamie. Thank you for allowing me to come on your podcast. I think that what you're doing is amazing and you're reaching so many people, and you're right, you don't know who's clicking on this, and so I'm praying that those who find your podcast find hope, find inspiration and are getting the wisdom that they need when they need it.
Speaker 1:Cool, thank you.
Speaker 1:Well then, with that, to my audience. Thank you so much again for joining me and Koma on this episode, and we will see you next time, on the next episode of Test those Breasts. Bye for now, bye, mae Friends. Thank you so much for listening to this episode of Test those Breasts. I hope you got some great much needed information that will help you with your journey. As always, I am open to guests to add value to my show, and I'm also open to being a guest on other podcasts where I can add value, so please reach out if you'd like to collaborate. My contact information is in the show notes and, as a reminder, rating, reviewing and sharing this podcast will truly help build a bigger audience all over the world. I thank you for your efforts. I look forward to sharing my next episode of test those breasts.
