Darrin Godin: Well, hello everyone and welcome back to Talking Hope. I'm Darrin Godin, your host, and I'm so pleased today to be speaking with Kommah McDowell. Kommah is an amazing mom, wife, and author. She's also a grateful breast cancer survivor and a tireless advocate for patients who face battles similar to what she's been through. And when it comes to cancer, she believes in the power of hope and impossible possibles, which we're going to talk about during this podcast.
Kommah, thank you so much for joining us today and coming on to talk about your story.
Kommah McDowell: Darrin, thank you for having me. I'm so excited and I'm going to give you a friendly gesture of saying you can call me Koko.
Darrin Godin: Oh, right. I'll call you Koko.
Kommah McDowell: Thank you. Those who know me call me Koko.
Darrin Godin: Well, thank you so much for being on, Koko. You're also a founding member of City of Hope's Patient and Family Advisory Council, and you're one of eight patients represented in the California Cancer Patient Bill of Rights, which is the first legislation of its kind in the United States, which gives cancer patients or patients with cancer inalienable rights to help them achieve success and equity in their care. That's very exciting.
Kommah McDowell: It is. It is exciting work, and I'm so glad to be a part of it and have the opportunity to represent patients and carry the torch for those who've gone on and to wage the war for what we need to do going forward and trying to make sure we're taking care of patients and treatment.
Darrin Godin: Well, it sounds like you're doing a lot of great work and I'm really excited to talk with you today and dive in a little bit deeper on all of that.
Koko, as you know, unfortunately cancer rates are increasing among younger adults in Orange County and in the United States. And City of Hope, Orange County has been researching that and reporting on that, and we know that when cancer comes early in life, it hits patients and their families really hard and in a different way. Can you tell us a little bit about your journey and how that came about?
Kommah McDowell: I was diagnosed when I was 29 years old, so definitely a young diagnosis for a patient, and in the process, I was engaged to be married. So when you just think about the scope of that, I was engaged, we had planned this wonderful life as you do, and before I even could get married, three months before my wedding, I ended up being diagnosed with stage four, triple negative inflammatory breast cancer. So for us, we had talked about four children and all of these things and all of that came to a halt because at this point in life, we were just trying to survive and my hope was to live past the two years that I was given. I had an expiration date of two years at 29 years old.
Darrin Godin: Wow.
Kommah McDowell: It has a huge impact on what family is even looking like or even possible with your [inaudible 00:03:17].
Darrin Godin: What's possible, right. So you're engaged, you get this diagnosis, I imagine you have that conversation, right? And you talk about, what are we going to do? Tell me about your fiancé then.
Kommah McDowell: Well, he is an impossible possible because he chose to stay with me through my journey. But when I was diagnosed, I actually gave him an out. I actually told him, "You didn't sign up for this." And I understood and would not be mad if he chose to walk away. So I gave him an out. And he told me I was crazy and he was in it for the long haul, however long that haul was going to be. And fortunately for us, we're 19 years in and still going, but at the time, he didn't know. And so we talked about children and we basically said we would adopt. If that's the option we have, then that's the option we go with.
Darrin Godin: Well, I am so happy to hear that story. For one thing, I'm happy you're 19 years in. Congratulations.
Kommah McDowell: Thank you.
Darrin Godin: He made a good decision, didn't he?
Kommah McDowell: Yeah, I think so.
Darrin Godin: I think he thinks that I'm sure as well. I'm sure he loves you very much. And did then at the same time. So you're 19 years in now, let's talk about that. You said you wanted to have family and you were faced with that decision, will this be possible? Tell me more about your feelings and your thoughts then about that.
Kommah McDowell: We had to come to terms with the priorities for us in our relationship. So we knew we were going to move forward with marriage. We knew adoption was an option for us. We wanted to try to preserve eggs, and they told me I was too far along and that would not be the best idea because it would take more time. So we just had to come to a point where we had to resolve, if I could just live, then we would have a fighting chance for anything else to happen. But first, I need to be able to live through this.
And so, at that point, we vowed to do whatever we had to do to get through treatment so that in the end, if God said so, we would have a child. How many? We didn't know. If that meant adopting, okay, fine. But it was really having the mindset of saying right now the priority is life. Trying to live through, survive, thrive through what was in front of us, which was this journey of stage four, two different rare forms of breast cancer, 5% chance of survival, it was mounting. And so to stay focused, we stayed focused on just me living through it and then see what happens. And it was 19 years later, we did very well and I'm fortunate for that, but it was a fight.
Darrin Godin: I recently saw a wonderful video that City of Hope made of your story and I was so encouraged by it. In that video, you talk about how you ended up at City of Hope. So tell us, what drove your decision to come to City of Hope versus another cancer center?
Kommah McDowell: With my story, I was misdiagnosed for seven months with a primary care doctor and a surgeon at a smaller clinic. And when I was finally, they finally discovered that I had cancer, I was given the opportunity to have surgery immediately. We're going to do everything and remove everything and do all this stuff. And I laid on the table and I remember my fiance and my mom being in the room and I looked at my mom and I was like, how did I get cancer? And that moment, everything froze. And you know what came to me? My mom used to work around the corner from City of Hope and she used to tell me about City of Hope, and like that, it came to me. And then a nurse chimes in this moment and says, "You could get a second opinion." And I said, "Pack my records up. I'm going to City of Hope."
I had learned of City of Hope because my mom and her coworkers would walk around the Rose Garden and go eat at the cafeteria and they just loved this place. That was my first introduction to City of Hope. Then I ended up temping there when I was home for college. And so then I got to actually work with the scientist as an admin, but watching that work was amazing. And so when it came for cancer to park itself on my doorstep, I just needed that reminder and I was like, pack myself up. I'm going to City of Hope.
Darrin Godin: So Koko, you arrived at City of Hope. What was different?
Kommah McDowell: This time? I was a patient. And as comfortable as I was when I was working there, temping there, that all gets stripped away. Now we're talking about me. And so I walked in with a bit of fear, which is expected, with all the unknowns. So when I went into the women's center, I really did feel a warmth in room. You could just feel... It's a sense of peace or warmth that I felt just going in the room. And when I was called back to actually meet with the nurse practitioner, she hugged me. So that's a different experience than when I was working there. I was able to go in the back, see the nurse practitioners, say hi and move about as a person who was really empathetic to patients, but not really understanding where they were in their journey and how walking in a building, how fearful that in and of itself is when you're trying to figure out what the fate of your life is.
Darrin Godin: Tell me about the hope that City of Hope offered you when you become a patient.
Kommah McDowell: Starting with the hug, that in and of itself said a lot. I think when you have hope, there's got to be love oozing all over that. And I felt the love from the team that my medical team who ended up being my medical team. When I met my breast surgeon, she was so in tune with me and my family. She was present. It was apparent that she cared. And I always say it's like she came to work just to see about me, and that's how I felt.
And knowing that I had a nurse and I had this surgeon who were just loving on us and just doing their best to help us stay together as we're working through this unknown, and then she has to deliver, "Yeah, you have breast cancer and I think you actually have a rare form of breast cancer." How do you deliver that and not carry the weight of that as you were telling someone? Especially, I was 29. We were engaged. This whole future, everything, it seemed to be tumbling, but the way in which they did it let us believe that it's going to be okay. That's a diagnosis, but it's going to be okay. And that's what I gathered from my team. That's what they did for me. They gave me the hope that it will be okay. And fortunately, it was for us. Not to say the journey was easy by any means, by any means.
Darrin Godin: Well, you had worked at City of Hope and had heard about some of the research that City of Hope does and continues to do today. In fact, you may have heard, Koko, that recently City of Hope was ranked top five in the nation for cancer care. That means number one in California. What does having a top cancer center available right here with access in Orange County now mean to you as a patient?
Kommah McDowell: It's everything because let's be real, I am 19 years surviving. People look at me and they're like, "You're fine. You're a survivor. You did it," but for 19 years, you live with the thought of, what if? For 19 years, I've lived with any symptom, anything that comes up, you think, "Oh, is that." So even with the longevity, I still find myself back in a chemo chair when I experience symptoms that are beyond just a normal cold or flu. And you're thinking, "Ooh, what does that mean? What could that mean?" So I still see an oncologist because it matters to me to know that I'm okay. I need them to check me at least once a year, but I have them of speed dial, just to know I'm okay because it doesn't leave the back of your mind. It is not like, "Oh yeah, you survived. You're done. You made it." You don't arrive. You're always thinking and you're always processing that.
So the fact that Orange County is right up the freeway from me. I was driving over three hours for an hour of appointment and then three hours home, but it was worth it. Now I'm so much closer. I'm able to not only go to my regular standing appointments, but if I have other concerns, I could pop in and it's easy for me to get in and out. So I love the fact that we have an Orange County campus that I call home now that will take care of me as well.
Darrin Godin: Yeah, we're obviously glad to be here in Orange County, and I know so many folks are benefiting from it. Even my own family members have benefited. And I think for me, it's exciting to know that our patients have access to all that research you were talking about. That's one of the things that makes us stand out. We do more research than anyone in California, anyone on the West Coast. And that research is cancer-focused, specifically on cancer, more than 800 clinical trials a year that are offering patients like my family members, like yourself, options for things today that may not be available to everybody else for maybe years to come because of that research and those clinical trials. And that's pretty exciting to know, that people can get that right here in Orange County.
Kommah McDowell: It is. It is. And to know that you get the full weight of City of Hope behind you. It's not as if you're walking into a sub-clinic that only provides two of the 50 services. You get the full weight of it, the whole breadth of it. So the sense of peace that comes with that, knowing that your team is going to actually be a team that has the ability to collaborate with one another internally for the best care for you, and to have the culture of City of Hope in and of itself is a collaborative effort that includes the patient. So to be able to have multiple locations that could give this level of care is phenomenal, not only for patients, but it says a lot about City of Hope. It really does. And about the importance of getting into communities so that they can care for the communities.
Darrin Godin: Yeah, well said. Well said. So let's take a little turn now. Tell me about this idea of impossible possibles.
Kommah McDowell: See, I love that expression and people like to correct me. They say, "No, you mean impossible possibles." And I'm like, "No, it's a possible impossible" because, see, I was told I wouldn't live past two years, 5% chance. That was just what the inflammatory breast cancer diagnosis. That's not even what the triple negative factor that was added on top of it. At the time I was diagnosed with triple negative, they didn't call it triple negative. They were just like, "It's not responding." It was not a thing yet.
So we did the math with a couple of researchers because I do research population science type of research with City of Hope, and I think we calculated it down to 0.3% chance of survival when you add in that triple negative factor. So that put a two-year expiration date on my head. So I [inaudible 00:16:57] that I was had a 0% chance of having children, 0% chance of having children. We have a son. I was able to conceive him naturally. He carried full term and he's so amazing, and that was a 0% chance of that happening. That was not a possible. He was an impossible. Minds were blown when I was... When I found out I was pregnant, they were like, "Okay, we need to check you. We need to make sure." I had so many people watching me because it was just a thing and they didn't think it would happen. I do have a follow-up story on that though I'll give you in a second, but there's that.
Then watching the fact that I've, for 19 years, been an advocate since my diagnosis. I had a non-profit organization that focused on inflammatory breast cancer specifically. I have not met another triple negative inflammatory breast cancer survivor, and I interact with people around the world. That's a possible impossible. The rarity of the diagnosis and the fact that I'm still here, that's a possible impossible because according to stats, that wasn't going to happen. That goes against the stats. That goes against the odds. And so that's where I live in the space of I believe there's a way out of no way. It could happen. Now, granted I'm a Christian too, and a lot of that is built on my faith and we put the full weight of our experience through the lens of our Christian walk and we just have to let it go and leave the rest up to God. And I could stand here today as a mother, as a wife, as a 48-year-old woman who was not supposed to see 30. Impossible? No, because I'm here.
Darrin Godin: I love that. And faith is important to me as well. And I think it's important to a lot of folks who probably listen to our podcast. And whatever faith tradition they are a part of, I think we can all recognize that when you go through something like you've been through and you survive when you weren't supposed to survive or when you were told you weren't going to survive, there's a responsibility on you, right, to use that for the benefit of somebody else for such a time as this. Right?
Kommah McDowell: Yes.
Darrin Godin: So talk to us more about what you've been doing with that advocacy. You said you had your own advocacy group. I know we mentioned a few of the other things you're doing. You've been part of this legislation in California. Why? Why is that so important to you, Koko?
Kommah McDowell: Somebody has to be the voice for the patient. And I truly believe I'm still here... Because I struggle with survivor guilt. That's a real thing. And I truly believe I'm still here because there's work to be done. And if all I could do is just be a voice for someone who feels like they have no voice, to advocate for them, especially in policy for cancer patients, that impact is huge, to be able to have a voice in that so that they get, the next person, whoever they are, your mom, your sister, who your neighbor have access to care.
Now, they may not be able to come into City of Hope and get the care they need, but the one thing I love about City of Hope is City of Hope's not selfish. They're not selfish. And if people understood that when they're faced with the challenges of insurance barriers and all of that, which is what legislation is talking about, there are so many barriers to care. City of Hope will speak into and consult with medical teams just to ensure the proper care is being given. And that's gracious. I think that's truly gracious.
And so I do this because I just want people to have access to care. I want them to know their life matters. I need them to know that no matter what the diagnosis is, it's worth the fight. Think about it, stage four. I'm still here. It was a fight to get here, but it was so worth it. And I want people to know that I have another hat I wear. And the other hat is more of coming alongside and aligning with the medical teams and saying and encouraging them to stay curious.
Darrin Godin: Say more about that.
Kommah McDowell: Stay curious because there's textbook cases, yes, but I was far from a textbook case. I was misdiagnosed for seven months because I was far from a textbook case. What was that?
Darrin Godin: I don't know why you got that little background of fireworks, but you know what, keep talking about it because I think you are a firework.
Kommah McDowell: I'm far from a textbook case and I was dismissed because I didn't fit the expectation. I was told I was too young to have cancer. I was told it was my hormones. I was told it would go away. I was told, "Oh, it's okay. You'll be all right." I was dismissed in every way possible because I didn't fit this mold or this expectation of a doctor. And I understand they have extensive experience. Many of them do. The heart of my, not concern, but my alignment is stay curious, stay curious. And that will help in the cases where I wonder why that happens. It'll help you ask the next question for that person, not for that type of cancer, but for that person who has a certain type of cancer.
Darrin Godin: Yeah. So why don't we turn that a little bit. Can you give some advice to maybe some of our listeners or our viewers? How should they advocate for themselves if they find themselves in a situation where they think something's going on, but no, their doctor's not quite sure or not able to put their finger on it? How should you advocate for yourself?
Kommah McDowell: Well, I learned in this process that there are advocates at hospitals and clinics that are there to help you when you have gotten to the end of what you think is your rope in trying to advocate for yourself. So I'll start with that. They have people who are paid to advocate for you internally within clinics and hospitals. City of Hope has a great team. So know that. But as an individual, I was 29. I didn't know any better.
I was on my own insurance for the first time and all I kept doing was I just kept going back to the doctor. I just kept going back to the doctor. Keep going until somebody answers your questions. I told my doctor, look, "If you don't want to do it, fine, I'll get another doctor," but I'm not stopping because my particular doctor didn't want to give me the time of day. I'm not stopping if the answer is not resolving or actually answering my questions. We know our bodies, people know their bodies it better than the doctor does. So when it's not right and it's not getting fixed, you've got to continue to pursue and you knock on every door you need to to pursue answers to fight for yourself.
Darrin Godin: That's good, Koko. I have a couple more questions for you. One, what does hope or the concept of hope mean to you? And then, secondly, you told me you had another story about your son or involving your son. So I want to hear that before we go.
Kommah McDowell: I did. Well, okay, hopefully that thought will come back [inaudible 00:26:07]. I have [inaudible 00:26:08] brain. So then I was like-
Darrin Godin: No problem.
Kommah McDowell: Where was the hint? What was that thought? But you know what hope means, I alluded to it earlier, is this love. This has been resonating with me with City of Hope particularly is the fact that I was loved on and I was encouraged and I was seen and I was heard and I was on the team. That to me demonstrates the love and care that was given to me as a patient. And because of that, I was given hope.
So the hope comes from understanding that the people rallying around you are working on your behalf and they're working for your good. And with that in mind, that is what helps you walk the next step forward because in this journey, sometimes you don't see the ground beneath you and you don't know what's coming up next. But when you know have a team of people rallying with you, for you, and helping you along the way, that is what gives you the strength and the hope that this will be okay, let's keep going. Ooh, I don't like it, but it's okay. Let's keep going. I mean, City of Hope, it's so appropriate the name because it oozes the hope that people need just to make it through the day. It really does.
Darrin Godin: Wow. That's the first time in doing this podcast that we've had somebody say the concept of hope means love to them. And as I listen to you, I think about all the people I get to work with, the amazing physicians, the amazing nurses and care teams, and I think about all the researchers and scientists that are right now literally in labs looking for the cures. And I think the reason that they're doing that is because, for one thing, they love the work they do, but they do. They love our patients. They really do love our patients and they love our patients' families. And because of that, we are driven to continue to look for those cures. We're driven to continue doing the amount of research that we're doing. We're driven to provide the most advanced cancer care and treatment. And when you love somebody, you give them the best. And that's exactly what City of Hope is doing. And so I love that you put the word love on it. I think that's awesome.
Kommah McDowell: Yeah, and that's been rattling in my head, honestly, for the last month or so. I just have been getting back into advocacy. I took time off to raise my son and now he's 15 and he's like, "Mom, you can go back now." And so getting back into this, I'm like, what does this really mean to me? How do I really feel about it? And that's how I felt when I could step back and look. That's what it was. And that gave me hope to keep going. But I remember my story.
Darrin Godin: Tell me.
Kommah McDowell: When I was going through radiation treatment, my radiation oncologist, although it said I had a 0% chance of having children, he told me, "Just in case there's a possibility of you having children, I'm just going to put an extra layer of protection over your reproductive organs." He had no idea that I would end up getting pregnant. According to the stats, I wasn't going to. But the fact that he himself had enough hope to say just in case, who does that? He didn't have to do that. He didn't have to tell me. It didn't have to happen. He could've just gave me perfect excellent care and went on about his way. But I mattered as a person, as a young person who was not even married at the time. Oh, I was married in radiation, but newlywed possibility of wanting a family just in case. And so when I found out I was pregnant, I found him and gave him the biggest hug because just in case, it made-
Darrin Godin: Made the impossible possible.
Kommah McDowell: Made the impossible possible.
Darrin Godin: Wow. Koko, I think that's a good spot to end right there. This has been an incredible conversation. I feel encouraged. I know others who are listening and watching feel encouraged as well. Thank you for all the advocacy work you're doing. Thank you for sharing your story. But thank you for caring about others and teaching doctors how to stay inquisitive and stay, what was the word you used?
Kommah McDowell: Stay curious.
Darrin Godin: Stay curious. And thank you for sharing your story of faith and hope with others. And 0.3% chance of survival and here you are, 19 years later, healthy, vibrant, making a difference. Truly, your life is for such a time as this and it's been a pleasure to get to talk with you today.
Kommah McDowell: Thank you. It's been a pleasure. Words can't even express how much I appreciate City of Hope and this podcast and the fact that you're in Orange County. Thank you.
Darrin Godin: Well, thank you so much, Koko. And unfortunately, no one is too young to be impacted by cancer. The good news is that if you ever receive a cancer diagnosis, there is hope. Koko has proven that today. With cancer, there is a saving difference that comes from having cancer-focused expertise. And at City of Hope, Orange County, we're focused on preventing cancer just as we are treating it and curing it. So we offer a range of screenings that range from mammographies and colonoscopies and so much more. So if you ever need our services, if you need help from us, we are here for you and we encourage you to get more information at cityofhope.org/OC or call us at 888-333-HOPE. That's 888-333-4673. Please be sure to share this episode with a friend or like it or subscribe so you don't miss the next episode. Thank you so much, and we'll see you next time on Talking Hope.