Episode 81: Finding Empowerment Through Adversity, Maimah's Triple Negative Breast Cancer Story

Maimah Karmo shares her story with triple-negative breast cancer and how she founded the Tiger Lily Foundation. Maimah emphasizes the importance of self-advocacy, community support, and education in traversing healthcare challenges. She shares her experience of being dismissed by doctors due to her age and ethnicity, and how this motivated her to create an organization that empowers women of color facing similar struggles.

  • Maimah Karmo is the Founder/CEO of the Tigerlily Foundation (Tigerlily) and an eighteen-year survivor of breast cancer. On February 28, 2006, at 4:45 p.m., Maimah was diagnosed with Stage 2 triple negative breast cancer. She had no family history and was 32-years old.  While undergoing her second round of chemotherapy, she made a promise to God that if she survived, she would create an organization to educate, empower, advocate for and support young women affected by breast cancer.  A first-generation immigrant from Liberia, who has experienced disparities first-hand, she is a leader in the women’s health field, creating and implementing national health initiatives for women and girls, with a goal of eliminating disparities of age, stage and color.  Under Maimah’ s leadership, Tigerlily Foundation has launched national and global health initiatives focused on ending disparities, through the #InclusionPledge, partnering with global stakeholders, with a call to action to recognize health disparities as a social justice issue; and working to end disparities for black women in our lifetime. She is a global thought leader, health advocate and philanthropist, committed to justice and equity for all. Maimah also works directly with women and their families to connect the patient with better care and knowledge. through events such as the Annual Young Women’s Breast Health Day on the Hill and other philanthropic efforts and successful educational and support programs. 

    You can find Maimah on Twitter, on Instagram, and on Facebook

    Check out the Tigerlily Foundation here.

Watch the video of our episode on YouTube

  • 7 minutes:

    “I ended up finding the flower one day, the tiger lily… It's like a woman, beautiful, different layers to her, and also when people are going through treatment there's a sense of so much fear. You do lose things in a way. You may lose your petals: your hair, eyebrows, eyelashes, breasts, other parts of your body, male or female. The flower is a perennial, so in the fall, winter, the petals fall off but in the spring and summer, they blossom again. I want people who are coming to Tigerlily to feel that sense of: I'm going through this time of dormancy and things are falling off, but that means I could grow and transform into something beautiful and amazing and just badass.You could find beauty, strength and be transformed throughout the cancer journey.”

  • 12 minutes:

    “So I did my breast exams every month as a habit. I shower, wash everything, check them, and then one day it wasn't the same.. And with the difference in knowing it was, it was a very, very subtle change when it was there, but I've been doing my exams for 18 years. I wanted other girls and their moms to have those kinds of conversations to talk about, as you're getting on the world, know how to carry yourself, how to feel confident in yourself, how to speak your mind, how to love your own company, how to love your body, how to honor that by eating healthy, getting rest, knowing your body inside and out and taking care of it and all the things.”

  • 15 minutes:

    “For anyone watching this, your intuition can save your life, so trust it. There are all the guidelines, the USPSTF guidelines, ACS guidelines, and NCCN guidelines. All those guidelines said that people like me who are younger and black shouldn't have cancer when in fact we get breast cancer the most often and have the highest mortality rates still. It's still increasing at this time 20 years later, so if I had followed the guidelines, they would have killed me. And who makes the guidelines? People who are very smart, who have big titles and accreditation at these big hospitals, but they were all wrong. Then those guidelines informed doctors who believed them because they say that you don't fit that profile. The guidelines were wrong.”

Full Episode Transcript

Samira (00:01.07)
Hi everyone, I'm Samira Daswani, the host of the podcast, The Patient From Hell. I have a very special guest with us today, an individual who took her experiences going through treatment and started an incredible organization called the Tiger Lily Foundation. Hey, Maimah thank you for joining us.

Maimah Karmo (00:18.039)
Thanks for having me, Samira.

Samira (00:20.462)
Can we start with your story? So you started this foundation, tell us what happened. What happened? How did you get to where you are today?

Maimah Karmo (00:28.429)
What happened? So I was taking a shower at 31 years old and found a lump in my breast. And my mom had taught me breast exams at 13, so I knew it didn't belong there. And I went and saw my PCP and they're like, too young. have breast, you're too young. So just don't worry about it. But I still want, I still want to, I was concerned. So I went and saw my OBGYN and she said, you know, what do you want to do about it? And I said, I want to do a mammogram and see, make sure that it's nothing.

The insurance company fought me back on that. were like, it's nothing because all the guidelines said women didn't, know, women got breast scans are more at, you know, late forties, early fifties or fifties and above. So I had to push for the mammogram. It came back clean. And I still was like, this lump is still there. I can see what I can feel what you can't see. So let's, I want to get it out. So get it out or just figure out what it is. So the mammogram came back clean and they said, you see, we told you so that you're fine.

And I said, no, I want to get, I just have to, I don't feel comfortable with the answer I'm getting, so I pushed for an aspiration. The lump wasn't aspirating. So I pushed for a biopsy and after months and months and months of this, you know, PCP, OBGYN, pushing for the, you know, to get it covered and, know, getting the mammogram back results back. And it was, you know, "nothing." Then pushing for the, surgeon to just do the aspiration and biopsy,

it came out that it was triple negative breast cancer. At the time, there's no treatment targeting TMBC at all. So although I had done the right things, knew my body, pushed for the right answers, was my own advocate, the guidelines, the technology and doctors had failed me. And also innovation in science, because nothing was targeting my cancer subtype. While going through treatment, I thought I would just take whatever they offered me.

that was available and I took had surgery then chemotherapy and while going through that I figured, you know, how can I figure a way to help people going through this? Are there other women and girls that may be at risk who don't even know they're at risk? Right. Because I was, I was, didn't fit the profile. I was young and I never saw anyone who looked like me, black or brown. Like I didn't really see people who looked like us. Right. So, so how many, how many people would be out there that didn't fit the profile,

Maimah Karmo (02:53.741)
who maybe have gotten cancer and maybe were dying or would have gotten breast cancer and not known to even look and then being diagnosed at a later stage. So it was kind of my way to figure out like, whatever's going to happen to me, how can I make something out of this is going to help to change how women and girls are treated in healthcare and how can it change the healthcare system? And so I began mind mapping Tiger Lily while in chemotherapy.

And it grew from that mind map and that ideation and will be 19 years old in next February.

Samira (03:28.596)
Wow. Okay, can we go all the way back? Sorry, you said 19, right? I heard 19. Did I hear that right?

Maimah Karmo (03:36.237)
It's crazy to think it's 19 years old. Even when I say it, I'm thinking like, I'm just getting started. You know, I mean, I look back now and I was, you know, I was just much younger and, I think back and that's why I advocacy so much because I didn't know the cancer space. I didn't know about policy, about advocacy, excuse me, allergies. I didn't know about building an organization boards, nothing like that. But I had this fire in my belly that

I wasn't going to stand for bullshit, right? You can't tell me how to manage my body in a way that could kill me when you don't know my body and what it's made up of and everybody's body is different. And so it really came out of my like, like what the fuck's happening? And this is not right. And this is, it just can't happen. And you know, who may have had cancer that's died because they were told, well, first of all, they wouldn't even know that even that they might be at risk, right? They may go see a doctor and be told you're too young and they would have gone home.

They wouldn't have pushed for mammography or a biopsy. They wouldn't have been as persistent as I was. And so I kind of wanted to like be that patient from hell. Like I'm going to fucking disrupt this shit and change things and just disrupt. And it was scary, but I just did one thing at a time. And also I love people, right? And I think I was in chemotherapy. I was meeting people who were in treatment who were just up by themselves and, or they had

trusted their doctor or trusted the guidelines or not knowing a symptom was a symptom of something larger. And so I felt this deep empathy for people like, just how could I make their lives better, their journey better, or the next person who may be diagnosed. And so it came out of a sense of like, like in the, like scream, the song scream, Michael Jackson and that, and then like, I want to love people and help them. So those, that's what kind of coalesce into this tiger part.

Samira (05:29.11)
Maimah Karmo (05:29.951)
It's off like, okay, that's what it's going to be, you know, so that's what happened. Yeah.

Samira (05:32.996)
Is that the inspiration for the name Tiger Lily?

Maimah Karmo (05:36.845)
My dad always called me tiger because I was kind of like this, I'm very strong but I'm very passionate but I'm also very steady. So I'm not the kind of person that's like a fiery, loud person but I have a very like quiet like this is what it is, this is what I'm doing, this is my path. I've always known myself in a way. So he always called me tiger because I was very feisty in a very sure way.

And, I love to dream. So anyway, so that was, called me tiger when I was younger for a long time. He actually almost my whole life. Yeah. And then, I ended up finding the flower one day, the tiger lily and the one that's called the stargazer is just so beautiful. It's like when you smell it, it's just like, just, right. It's like, it's like a woman, beautiful, different layers to her, whatever. And also when people are going through treatment,

There's a sense of like so much fear and it's so much like angst and it's so much overwhelmed. And you do lose things in a way, right? That you didn't want to lose or plan to lose. You may lose your petals, like your hair. You may lose your eyebrows, eyelashes, your breasts, other parts of your body, male or female. Like the flower, the flower is a perennial. So in the fall, winter, the petals fall off. But in the spring, in the spring and summer, they blossom again. I want people who are coming to Tiger Lollipop to feel that sense of

Samira (06:55.39)
so beautiful.

Maimah Karmo (06:59.629)
I'm going through this time of dormancy and things are falling off, but that means I could grow and transform into something beautiful and amazing and just badass. So that you would find hope in that journey, not a sense of I'm just going to die or it's awful, which it is, but you could find beauty, strength and be transformed throughout the cancer journey. Because all you hear about when you have cancer is like, my God, this is bad.

Samira (07:22.87)
I love that. OK.

Maimah Karmo (07:29.557)
It's a lot of angst and fear and that energy creates more of the same, right? So I want people who are coming to me to kind of come to the website and go, what's that? Tiger Lily. Interesting and smile and feel a sense of like, I could be safe here and I can be, I can find a community here and I can breathe. And so when you hear the name, what do you feel? You feel like, what is that? I like, you think of a flower, right? It makes you smile, makes you kind of go.

your endorphins start to go. people have the energy when they come to us and feel us. And that's kind of, then when you begin doing the work, become a trained advocate and you become more empowered, your flower blossoms even more, right? And you meet people and you're out there doing advocacy and you're dropping little, you're germinating, you're dropping little seeds that are going to grow. And so it's really about that transformation and planting seeds of hope in your own self, in your family, your community, and then, you know, nationally and local.

locally and nationally and hopefully globally as well.

Samira (08:29.39)
That's awesome. I love it. Can we go back to something you said at the very beginning? You said that your mom taught you how to do a self-exam at the age of 13.

Do you mind talking about that? That feels so forward thinking. I mean, we're talking 19th, whatever math, I'm doing my head now.

Maimah Karmo (08:48.013)
Well, know, believe that, you know, I mean, we're taught to brush our teeth and take baths and do our laundry and floss and do all the things, see a doctor once, whatever, you know, like, but we don't teach people to touch their bodies, right? We don't teach boys how to touch certain parts and girls how to touch certain parts in terms of knowing their bodies to be healthy, right? We don't tell young women to be aware of, you know, signs of skin changing or

And my mom said, the best thing for someone in your life is to know before something happens to you, know what the risks are. She never told me that this is about breast cancer. She said more about it's more about knowing your body and being empowered to know what to do when it changes. And she said, your body right now, you're blossoming, you're getting breasts and they're barely there, but I can see them coming, but they're going to grow and they're going to change. And if they change in certain ways, that's beautiful, right? You're becoming a woman, you know, own yourself, head up, chin up.

Walk like, just own the room at the same time, it's how you, how you, take care of your body inside is actually more important than how you look. So like as you're growing and enjoying your womanhood and blossoming in the world, you know, your body will be changing and your breasts could have abnormal things that could happen to it, to it, right? Like discoloration or a rash or whatever it was. So it was more of that kind of conversation. I was really embarrassed because I just, you know, you know, when you get these things, you're like,

know, because boys are acting differently towards you and you have to wear a bra. go to the, the, the people are looking at your, are you wearing a bra? Like it's so embarrassing. And my mom could see it. like, if my mom can see them, then everybody can see them. You know? So, but that conversation changed my life because when she told me about the breast exam, and she taught me how to do that, and she said, do it every month. And so I did. I have an African mom,

whatever she says you do, there's no questioning. know, the slipper comes out, you know, you know this, you're a brown girl. A slipper, what did I say? What did you think? I heard you thinking, I'm like, okay. So I did my breast exams every month as a habit. was part of my, I didn't need a shower tag or a reminder, I just did it. I shower, you know, wash everything, check them. And then one day I was checked and it wasn't the same, know. And with the difference in knowing it was, it was very,

Samira (10:47.161)
I have a stagamotor.

Maimah Karmo (11:10.805)
very subtle change when he was there. But I've been doing my exams for 18 years. I knew, right? And so I wanted other girls and their moms to have those kinds of conversations to talk about, you know, as you're getting on the world, you know, how to carry yourself, how to feel confident in yourself, how to speak your mind, how to love your own company, how to love your body, how to honor that by eating healthy, getting rest, you know, knowing your body inside and out and taking care of it and all the things. So it really was part of my dream.

start my journey as well. My mom's in my story was one of how can other moms and daughters have the same kind of connection where they share these important stories that could change your life and maybe extend your life as well. So that's the story.

Samira (11:54.724)
I love it. I had another one for you, which was, it sounds like you, so you went to the PCP, go to the OBGYN, you know something's wrong. The mammogram comes back negative, but you still know something's wrong. So you are basically pushing against the system, right? You're pushing against the system. So help me understand. So for what it's worth, I've been there. I was 30 at diagnosis, very much relate to relate to that.

Maimah Karmo (12:10.71)
EVERYTHING

Samira (12:24.152)
How did you know you should push?

Maimah Karmo (12:27.701)
I knew my body.

Samira (12:29.76)
What does that mean?

Maimah Karmo (12:31.373)
It meant that I've been doing something called a breast exam for 18 years. It's like, knew my body enough. I I touched, I felt that I looked at it, know, as I knew, but also I trusted my intuition. I mean, there's so many people I talked to who ended up having cancer or either advanced, usually advanced cancer when they had a feeling that something was wrong. They saw a doctor, they were told, don't worry about it, come back later,

and they had dismissed their own intuition, which is your godsend protection system. And little of a doctor saying something that he has a white coat on and he has a MD behind his name or her name. And so I think just knowing my body and knowing that my gut was like something's wrong, something's wrong. It's kind of like when you had a red light and you just pause, you don't go and then somebody runs a light, you know, or if you meet somebody who seems kind of off, you're like, I don't know what they're off to me.

They're smiling at me. They seem like a nice person, but they're kind of off. And you learn later on, this person's not an honest person. We know these things. So I just knew. And I couldn't let it go. I couldn't shake the fact that something felt off. And my doctor was like, Mima, you're really too young. And I never had any patients with this before. When I saw the surgeon, she was like, this is crazy. You can't have cancer. This is not a big deal. She was laughing about it, joking.

I don't feel good. don't, I'm exhausted. I'm having night sweats. I feel tired. You know, I'm always tired and this thing is getting bigger. And I just, she's like, well, you know, I've been doing this for a long time. She on her, on her wall, she had plaques upon plaques and you know, all the, those little like certs of like this school and that. And I'm thinking she's a doctor, you know, and she's had this, she has a lot of certifications. She's, you know, she's respected. Like, am I wrong here? I'm like, but

something in my gut, my belly was like, no. And I've been through enough in my life to know that when I have that feeling in my gut, I have to figure out why I feel that. And that's what I did. So for anyone watching this, your intuition can save your life. So trust your intuition. And by the way, Samira, there are all the guidelines, the USPSTF guidelines, there was ACS guidelines, was NCCN guidelines.

Samira (14:35.0)
Yeah.

Maimah Karmo (14:52.405)
All those guidelines said that people like me who are younger and black shouldn't have cancer when in fact we get breast cancer the most often and have the highest mortality rates still. And it's getting, it's still increasing at this time still 20 years later. So if I had followed the guidelines, they would have killed me. And who makes the guidelines? People who are very smart, who have, you know, big titles and accreditation and, and, know, they at these big hospitals, but they were all wrong. That's the first thing.

And then those guidelines informed doctors who believed them because they say that you don't fit that profile. the guidelines were wrong. Those who follow the guidelines, the doctors who we trust were fucking wrong. Excuse my French. And then the guidelines informed technology, right? Well, the machine works for those who get it, maybe have be older, who maybe have less dense breasts. the machine was meant to not, it wasn't meant, it wasn't looking for people that would, it couldn't detect.

It couldn't detect, I'm sorry, tumor in my dense breast. So if you're older, you probably wouldn't have as dense a breast, right? Because the body's changing over time. So the technology wasn't advanced enough to detect the tumor in my breast. Or a woman who was younger and women who are black and brown tend to have denser breasts. That's the second thing. The technology failed me and failed many other women. And then I told the surgeon that I wanted to, well, then the insurance company wouldn't cover the mammogram. So I had pay out of pocket for that.

And some people can't afford that or would say, you know what, if it's that, if they think it's that much of a stretch, maybe I shouldn't bother anyway. Right. Then when I got the mammogram back, it was a false. was, it said it was false. I'm sorry. It was false negative, but it was a tumor. they came back clean. They said, the document says that here's a scan. It says that you have nothing wrong with you. You're fine. I'm like, I don't care if it's that, if it's the freaking Dead Sea Scrolls, like I'm going to have to make sure that this is not.

I have to know, right? So I think that's important to your question. Like we can't expect that a body of people that don't know our bodies, guidelines that don't know who we are individually in our DNA and our cultural, all the things, or a doctor knows better than we do. So I have to push through all those things to get diagnosed. And after being diagnosed, it was triple negative breast cancer and that was a whole other ball of worms. So I just tell people trust your instinct, know your body, trust your instinct,

Maimah Karmo (17:18.443)
and be your own best damn advocate.

Samira (17:20.772)
Okay, so on the last point, so going back 19 years, not knowing what you know today, so going back 19 years, okay, before you know all the guidelines, how did you get smart? Because there's getting diagnosed and then there is now you have to make these decisions, right? And it sounds like you're very activated out the gate.

Maimah Karmo (17:41.345)
I wasn't though, I was terrified. I think that for me that it was the power of community. So one of my best friends, I'm a very focused, calm, centered, I'm very organized. I couldn't remember where I put my purse. was just like my ID, I couldn't think straight. I started driving on the wrong street. I was scared shitless, I was terrified. So my girlfriend called me and said, have you found doctors yet?

I don't know. I didn't know what a radiologist was from a surgeon or an oncologist. I didn't know this stuff. didn't know any of it. Elston scores, MUGA scans, all kinds of these different tests. I'm like, what in the hell? So my girlfriend, when you're in trauma, no matter how smart you are, educated you are, that shaker was out the door. So she was like, just go in your purse, give me your insurance card. She went until my insurance plan somehow and found a couple of doctors for me.

She called my then boss who then they figured out they compared notes and then they made the appointments for me and they called me and said, the appointments tomorrow, put it on your calendar. And then the next day came and I just sitting there like I was just a zombie. I was literally a zombie and okay, your appointments in an hour, you have to leave the job. Because I would forget everything. I was just in a state of shock. And then I went through that process of like just having my friend literally hand hold me or having somebody come with me. Cause I was just, I was a total like, I was just out of it.

And then of course, over time, I begin to understand certain things and it's up time. know, that's why I really believe in the power of advocacy and peer support because nobody can be expected to understand cancer and make decisions about their life and health when in a place of trauma. And so, and that's why it's important to get, to be aware before something happens to you because when it happens, you're overwhelmed. So, so I became smart over time, but it wasn't for a time.

And my goal is to get other people smart, to be able to help them make better choices and decisions at the right time, so they have better outcomes.

Samira (19:42.456)
I love that. I have so many questions for you. I think can go on for hours, by the way. Let's see. What's the best one to do for you?

Maimah Karmo (19:54.443)
you

Samira (19:54.468)
How did you know in that moment, so you're a deer in headlights sitting there, kind of like a zombie, your friend set up the appointment for you, you're hearing the stuff the doctor is saying about the diagnosis. How do you go from that to knowing you're getting the right treatment?

Maimah Karmo (20:14.145)
I wasn't, it didn't exist yet. mean, that's how screwed I was. That's why I was so scared. And just to leave the curse words out, but I was just like, it didn't exist. They didn't have any TMBC treatment at the time. So that was one thing. mean, that's why I'm a huge proponent of clinical trials. I've always been for the past 19 years because it didn't exist. Now we have treatments for triple negative breast cancer. However, for those people who have treatments that target their cancers,

It was important to get biomarker testing right away to know what kind of, you know, to know what your body needs. And then I think advocacy is really critical because you may see, have a doctor that may be in a community that you live in that's rural. They may not be an academic doctor or science focused doctor. They may not know what's out there. I've had countless patients reach out to me for help after seeing a doctor. And I'm like, what about this treatment? What's that? What about this clinical trial? I didn't know about that. And you know, they're finding that out from me

or my staff who's walking them through the clinical trials by navigating them, like saying, here's a website, put this in there, this is going to come out and here's what that means. We're taking people to San Antonio breast cancer symposium next week, patients to be able to understand the science of cancer and the science behind cancer and treatments and trials and all of that. But I think it's important to know by asking questions, by being in the community as well. And so for me, advocacy is important because

We can't do this work by ourselves. can't do it without community. We can't do it without people that know more or are further down the road where they have that experience, but also they have the knowledge and they have this means to calm us down when we're overwhelmed and make it make sense. Because even when you, when you are in a place of, okay, I made these decisions, you think it is going to work. What's going to happen to me. So having a person that has been down the road that tells you, tell you, well, I'm sorry, that knows about the science can say, here's what you can think about. You should know about these things.

I can tell you that I've walked that path and here's my outcome. So just be hopeful. It's honest with you that has that compassion for your fears and your challenges and the things that you're dealing with and overwhelmed and that your life has changed overnight. I mean, it's like someone telling me the sky was blue. I'm like, no, it's not blue. I don't believe it's blue anymore because it was blue before the cancer. And it's like the whole world was different than I thought it was.

Maimah Karmo (22:40.523)
It was all a lie for me and I had to really be adapt to like, no, like here's my new normal, but my new unnormal, right? It's never gonna be normal again. This is what it is. So I think it's important to again, ask the right questions of your doctor. Get multiple opinions. Don't just see one doctor. Find organizations that you can go to to get information that's correct and factful. Yeah, factful.

And then find people that have been down the road that you're going down, that they can talk to and get, know, what is your personal feeling about this? So you need all those things to get through the cancer treatment process and or a clinical trial journey as well.

Samira (23:22.26)
Tell us about San Antonio. I'm gonna be there too, by the way, in person.. In person? I haven't been...

Maimah Karmo (23:25.939)
yeah, awesome. San Antonio is the largest breast cancer global conference in the world. It's kind of like all the breast sees people, all the best of the breast physicians, oncologists, surgeons, scientists, radiologists, advocacy groups, people that do diagnostics, everyone's there. we're all running around,

is a million miles a minute. all going, we're traveling to events, we're taking care of patients, we're running organizations, doing all the things. But for once in a year, everyone is together in the center where they report on the newest data, the newest science updates, people you haven't seen for a year get to hug and spend time together and commune. And it just feels good because you're amongst people that have the same, a singular.

vision to end cancer and breast cancer and to love those who are living with it. And so that's, just, feels good. It's busy. It's crazy meetings and events, but you leave there knowing that you're doing something meaningful and with friends that you love, that you've known for years and that each year you're coming back with, there's more innovation, there's more science, there's more hope for people that are living with cancer. And there things that didn't exist maybe a year or two before. So it's a place that

gives you a sense that things are transforming, they're getting better. And if they're not, we're going to work to figure out how to make the problem be better and how to help patients navigating this journey. Because people feel alone during cancer treatment, the entire process. And knowing that people are friends of mine who, when I'm going every year, they're like, go, Maima, go. They know we're going to go there, and we're going to learn the science and all the information and come back and share with them. And it's going to help someone at some point

have extended life or have the longest life possible, right? A much longer life. So it's beautiful and it's fun and it's exhilarating. And again, it's about hope, right?

Samira (25:29.88)
You said you're taking patients there? You're taking patients there? How many patients are you taking? What's that?

Maimah Karmo (25:34.187)
I don't remember offhand, we, so in 2019, we took the first time, for the first time, the largest number of black patients to San Antonio Breast as an organization. Cause people might go, but they didn't really have support or we took about 20 black women there. And we hosted the first ever black breast cancer symposium, called us enough MBC. And we had it in, in, we had it right next to the center and it was epic. We brought in,

know, drug companies and manufacturers and other sponsors and partners and other groups. And we empower black women to lead by sharing their stories and share their their experiences. And it literally transformed how people treat and think about, listen to, learn from women of color, black women in particular. And so that has grown over the years. And we're going to have people who are this year, people are to be there in person with us. And then some people will be online, watching online and engaging online. So

If they can travel or they're not well enough to travel, they'll be in a Zoom watching different sessions. Before they go, we train them on how to understand the symposium, how to navigate the space, how to understand the sessions. What some of the key things you should like words to know? What things you want to ask about? How to not be afraid to ask a question. When you're in a room with full of doctors saying big words, you're like, should I say anything at all?

So they get pre-training and pre-empowerment. They get a toolkit. They get social media access to share. They get to write blogs when they're there, when they get back. We're to have a pre-listening session, listening session while we're there, session online, and then a post like what happened. So it's, the cool thing is imagine a patient that doesn't understand cancer or the science of it, and they go there and they're amongst the best in the world, maybe like look at it, talk about cancer and technology and

I'm sorry, innovation in technology innovation and science innovation. And they get to learn about treatments and trials and they come back, they just get so empowered and fired up. that sense of helplessness is now a change to one of hope and empowerment and community. And that's what the conference does for all of us, for many of us.

Samira (27:48.412)
I so love it. Okay, I'm watching the clock. think we're almost there. Here's my wrap up question for you. And if you're up for it, I would love to have you back for part two, and maybe to give us a glimpse of what SABCS was for you as a...

Maimah Karmo (28:01.889)
Who would to, me or an angel advocate?

Samira (28:04.933)
That would be amazing. Here's my wrap-up question for you. So 19 years of Tiger Lily, you're entering your 20. What do you wish happens in your 20? Magic wand, no constraints.

Maimah Karmo (28:15.797)
Magic wand, I do feel a sense of frustration to be honest that, I mean, 20 years is coming up and people are still saying what I said when I first found my tumor. Like, you know, I don't feel good. I don't feel right. Something's off. And they're being told you're too young. The guidelines say, or they're getting dismissed and delayed and denied some kind of access, right? So, and then they're dying. I mean, literally there's somebody who I know who's died every month this year.

And so, you know, to work this hard, it's not just me, there's people all over the world working to end cancer as we know it, all kinds of cancers and see the investment going into it. I just want for it to stop. so that's one thing to figure out how to, how to make cancer more chronic and not terminal, like a having a, you know, I don't know, just what people don't die from it. also I, I hope based on where the world's going with the U.S. climate in politics.

I'm really nervous for people who look like us and how that could impact innovation in healthcare and access in women's bodies, and so if I had a wand, would change the wand to go back to November 3rd and sprinkle some fairy dust and things would be different. But in the meantime, you exist, I exist. We're a bunch of bad ass people from patients from hell. We're gonna keep bad assing it and working our butts off and...

and pushing the system to be better for us and advocating better for our patients every day, not better, but more. so the one would do two things. It would change the way that policy could in sense at some point next year harm people in healthcare. And it would find a way to stop in cancer once and for all. Yeah. But I just feel like I'm very thankful, right, to be...

alive 20 years later. Some people will have targeted treatments still don't make it and I'm still here, which is why I love what I do. I love serving people. I love making a difference. And also at this point, I'm also living for myself a little bit more. I'm doing more for me. I'm saying no or not right now. And there's no sorry. It's just that I love what I do, but I lived to be alive. Right? And so I love advocacy, but I'm advocating for me too in a sense that I'm living for,

Maimah Karmo (30:37.899)
myself now and I want to do more travel and write more books and do more things that are fun and have the two coexist. But where I'm really fully living my life and I mean, I've done the thing I built this thing. beautiful. We're training advocates all over the country, all over the world now. So it's grown to where it's grown to where I wanted for it to grow. And I love seeing new advocates come in and kind of just bring their voice to it, their

flavor to it, their ideas and their opinions. to me, that's how you lead. You build something and you say, here, take it and run with it. So I'm enjoying seeing women come in and just grow and transform and seeing them change from feeling helpless to feeling hopeful and empowered, becoming badasses from hell too.

Samira (31:27.756)
I love that. Thank you. Thank you for everything you've done for the past 20 years. Thank you for sharing your story. Thank you for taking the time. Thank you for making room for us. And I really, really wish that the next year brings you, of course, the vision you're creating, but also brings you more time for yourself to truly live.

Maimah Karmo (31:44.749)
I'm manifesting that, I'm a manifester.

Samira (31:47.544)
I can sense that by the way. Really, really appreciate having you. Hopefully I see you next week in person. All right. Thank you.

Maimah Karmo (31:50.125)
Yes, thanks for having me. Yes.

I'll see you next week. Yeah. Okay, much love. Okay, bye.

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