Transcript: Liliana’s Story – Marathon Runner, Bladder Cancer Survivor

July 10, 2024

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Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by and about the bladder cancer community. I am also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN. Producers of this podcast.

I’m pleased to welcome today’s guest, Liliana Martin. Liana was diagnosed with non-muscle invasive high-grade bladder cancer while training for the 2022 Bank of America Chicago Marathon. Liliana is an attorney and works in the financial compliance sector. Liliana’s first encounter with cancer was when she was 13 years old, and her cousin, Dulce, of the same age, was diagnosed with stage four uterine cancer. Dulce would be one of many of Liliana’s cousins and aunts and uncles to be diagnosed with different forms of cancer over the years. Those early experiences motivated Liliana to adopt a very healthy lifestyle, and consequently, she was surprised when cancer knocked on her door. Liliana is 46 and currently training with her 20-year-old daughter, Camilla, to run the Chicago Marathon this year. Aside from running, Liliana loves reading, spending time with her family, including her dogs and cats, cooking, and talking to her best friend. Liliana is eager to share her bladder cancer story and hopes to raise awareness so that more women can experience better outcomes. Liliana, thanks you for joining our podcast today.

Liliana Martin:

Thank you so much for having me.

Rick Bangs:

It’s an honor. I want to start with your diagnosis and treatment. And it took in your case, which sometimes happens, took some time before you were diagnosed. So can you tell us what happened and when you were diagnosed?

Liliana Martin:

Yes. I started having blood in my urine during the summer of 2021, and it took one year almost exactly to the date from the first time I had hematuria to be diagnosed with bladder cancer. So what originally happened in 2021, I was training at the time for the Berlin Marathon, and I was tired. I would go on my runs and then come home and sleep. But I was training for my first marathon, so it was normal. That’s what I thought. That’s what I thought I was supposed to be feeling. When the blood in my urine appeared, I made an appointment with my primary care physician and it took four or five days before he could see me. So by the time I went to his office, the blood in my urine was no longer visible, but it still appeared in microscopic amounts. The doctor at the time ran some blood work and everything appeared healthy. He said that I had the most boring blood work he had ever seen. It was normal.

Rick Bangs:

Which is always the goal.

Liliana Martin:

It’s a good thing, I guess. I have a really, really low resting heart rate, and I was in really good shape. I had eaten vegan food for almost 10 years. Very health conscious. And so he said, “It was probably a kidney stone, but just to make sure you should go and see a urologist.” I’m sorry, I take that back. He told me to go and see a nephrologist to check my kidneys.

I made an appointment with a nephrologist. It was going to take a lot of time to see the nephrologist, so I actually went to the ER because I thought that would be faster. But they looked at the notes from my primary care physician and they just focused on my kidneys too. The ER found nothing wrong with my kidneys, made a note in my chart that if the blood came back to see a urologist, but nobody told me anything. I just found it afterwards reading the notes. Then I saw the nephrologist. They did an ultrasound of my kidneys. They didn’t find anything abnormal. No stones. Nothing.

Rick Bangs:

And you don’t have any pain.

Liliana Martin:

Yeah. I have no pain at all.

Rick Bangs:

No pain. And I’ve had a stone, so believe me, there’s pain involved.

Liliana Martin:

I have no idea. I have migraines. I get really bad migraines, and so my primary care physician is … Or at the time. I’ve changed doctors since. But at the time he thought that I have a really, really high pain tolerance. So he was like, “You might have passed it and not even felt it.” I was the woman that when I was giving birth to my daughter, I was having dinner, having contractions, and I’m asking, “Do you think we should go to the hospital?” And my husband’s grandma said, “No. If you were giving birth, you would be screaming, you wouldn’t be eating dinner.” I was like, “Oh, okay. I guess I’m not giving birth yet.” So I kept eating, ordered dessert and everything. By the time we got to the hospital, I just had to push and I pushed once and she was out.

Rick Bangs:

Oh, she came.

Liliana Martin:

I do really have a high pain tolerance. So knowing that, I was like, “Well, maybe it was a possibility. I don’t know.” But just to be sure, I made an appointment with a different nephrologist and basically they looked at the test from the previous doctors and told me the same thing. And by that time, some of the doctors had already told me, “It’s probably the running. Sometimes that may cause some tears, and that’s probably the reason for the blood. You’re really, really healthy and it should be nothing to worry about.” And so I just continued running and training and didn’t really think much of it. And like I said, I continued to be fatigued, but I thought that was normal. And so I completed the Berlin Marathon, and then I had just started a year later training for the Chicago Marathon. Now we are in 2022, and the blood in my urine comes back, but this time it was a lot worse.

So the first time in 2021, it looked like orange-ish in tone. The second time around it was like cranberry juice. And so I really got scared and I had already made a plan in my head in advance that if I ever had blood in my urine again, that I was not going to wait to see my primary care physician. That I was just going to go straight to urgent care. Because I thought if they asked me for a urine sample and they see what I’m seeing, they may give it more urgency because then they’re going to have a visual. I was lucky. I went to urgent care and I had a really, really good doctor there. She said, “This is definitely not normal. There’s a lot of blood and you need to see a urologist right away.” She did a manual examination of my abdomen. She didn’t feel anything, but she said, “You know what, just make an appointment right away with a urologist.” So I immediately contacted Northwestern and they told me the first appointment wasn’t even with a urologist, it was with physician’s assistant. So I just took the first available one and I was able to get in within days.

And so they had me do a CT scan. But even after the CT scan came back, the physician’s assistant called me and said, “We do see something in your bladder, but it’s probably just a blood clot, so I don’t want you to worry about it, but we do need to do a cystoscopy just to make sure.” And that’s when things started changing. I made the appointment for the cystoscopy. I think it was a week or two later after the results from the CT scan came back. And within minutes, the doctor doing the procedure started talking about surgery. And it just felt like everything around me started spinning. I was so confused. I really thought, and I felt so strong and so healthy, and all of a sudden these guys are talking about surgery and we have to schedule it as soon as possible. And I’m like, “What are you talking about?”

Rick Bangs:

Right. I’m healthy.

Liliana Martin:

And I had gone to the doctor by myself. I didn’t even think I was going to be anything negative. So I was just there by myself and just in total shock. And the doctor leaves and then the nurse comes back and gives me all this information to schedule the procedure, and I need to go to this room to schedule it. I’m just trying to remember everything they’re telling me and trying to wrap my head around what they’re telling me. It was a very overwhelming moment. So I went to schedule the surgery and they told me they could do it literally two days later.

Rick Bangs:

Wow, that’s fast.

Liliana Martin:

It was really fast. It was really, really fast. But I actually decided against doing it so fast because it was my daughter’s high school graduation. I don’t know if there’s a right or wrong way to do things, but I tend to trust my gut. And in that moment, my gut said to schedule the surgery after her high school graduation, so that’s what I did. And part of it was that she was a kid during the pandemic, and I felt like she had already missed on a lot of things in her age group that normal teenagers in different generations had gotten to experience. And I didn’t want to take away from her the joy of her graduation and have basically everybody focused on me and my surgery. So I thought, you know what, let’s get through her graduation. Then all of her memories of her graduation will be … It’s all about her and her accomplishment, and then we can switch gears and then focus on me and what’s going on. And you know what? If I had to go back in time, I would do the same thing. I don’t regret it one bit. It was a short delay, and it was very, very meaningful to me to give that to her.

Rick Bangs:

Oh, absolutely. So how long was the delay?

Liliana Martin:

It was just a couple of weeks. My husband wasn’t happy with my decision, to be perfectly honest. He thought, “This is already advancing. What are you doing? It already it took so long to get it diagnosed. Let’s get this thing out.” Yeah. It was a little scary, but my gut was telling me that that’s what I needed to do. And I said, “You know what, I appreciate your opinion, but I need you to support my decision right now.” And that’s what we did. And thankfully it worked out. So she was able to graduate, and then I had my surgery on June 8th.

Rick Bangs:

Yeah. This is a TURBT, right?

Liliana Martin:

Yes, correct. So I had TURBT and they removed a tumor that was 2.5 centimeters. So that’s about an inch in diameter.

Rick Bangs:

Yeah. Almost exactly.

Liliana Martin:

Yeah. So that was June 8th. June 9th, my daughter was getting a scholarship and I couldn’t make the ceremony because I was recovering at home, but I felt it was fine. I was like, “Okay. You go and get your awards. Send me photos. Send me videos.” And so she went there with her best friend and I stayed at home recovering. And then a week later we were doing a campus visit, and we were at University of Illinois in Champagne-Urbana. After the surgery and the time that I had the actual results of pathology, I was a nerve wreck. I was just checking my chart nonstop. It was just refresh, refresh, refresh. I wanted to know the results as quickly as possible. And they weren’t coming, and they weren’t coming. And so we were at the campus visit and the whole time she’s shadowing students, working on selecting her schedule and doing all sorts of things. So I’m basically by myself all day just sitting at a Starbucks waiting for whatever moments I had to go and do something and participate, and I’m just refreshing all day.

And then the results didn’t come during the day. She was just meeting me at the Starbucks, and we actually were just walking towards the car to return back to Chicago. And all of a sudden I get this notification on my phone and I opened it immediately. I wasn’t even thinking. It was just a reaction. It was just notification from Northwestern, open it. And I saw the word carcinoma and it felt like somebody punched me straight in the chest. I started walking behind her, and my reaction was just this … And I didn’t breathe for a few seconds. I was just in total shock.

Rick Bangs:

So now you know you have cancer, so it must have told you you had non-muscle invasive.

Liliana Martin:

Yes. So it was non-muscle invasive, and they said it was high grade, which means that it just has a high degree of recurrence as I understand it.

Rick Bangs:

Yeah. It’s also more aggressive.

Liliana Martin:

Yeah. Very aggressive. It’s just a mean one. It was lucky if you think about it, right? Non-muscle invasive. So I probably had had it at least since the summer of 2021 and somehow it did not go through the muscle in my bladder. It’s just good luck.

Rick Bangs:

Which is very fortunate. So now you have to figure out what treatments you’re going to have. So what treatments did you have and how did the treatments go? And then along with that, along the way, how is this impacting your running in marathons? Because I’ve already heard you were doing two marathons.

Liliana Martin:

Yes. So all sorts of things start happening in my head. Honestly, at first, I think I was just enraged. I think that’s the best word to describe how I was feeling. I was just like, “How can this be happening? I’ve been taking such good care of myself.” I was taking care of myself in a very … It was very related to my cousin Dulce’s cancer diagnosis. I really believed erroneously that I had a lot more control over things than I actually have. And it took me a while to learn that lesson.

All my life growing up, it was just focus on what you’re eating, try to eat fresh foods, stay away from processed stuff. Now that’s the talk. But I’ve been doing these for decades. It’s just like that’s been the way I live my life. For better or for worse, I get migraines. So if I eat anything out of a can, I’ll have a migraine tomorrow. It’s just my body reacts very strongly to whatever chemicals they’re putting in the good. It’s a good thing, I guess. And so I try to cook at home, make fresh foods, a lot of vegetables, salads. Even if we go out, I always try to make the best choices. Even if I get a salad, the dressing is on the side. Just really, really trying hard to make good choices in terms of what I was eating. I really prioritized my sleep. I don’t know how people function with less than eight hours. I can’t.

Rick Bangs:

I know. I know. I’m with you. I’m with you.

Liliana Martin:

I’m that person that is in bed and winding down at 8:00 PM and I’ve always been like that. I think it really had to do with my cousin’s diagnosis. She and I have always been really, really close since we were children. We were still children. We were 13 years old when she got her diagnosis. And the doctors gave her six months to live. That was horrendous. It was one of the worst times of obviously her life, but also my life. And I don’t think our family was ready to cope with something of such magnitude.

My cousin didn’t grow up in Mexico City. She grew up in a village that is about six hours away from Mexico City. So my aunt and my cousin would have to travel by bus to Mexico City for my cousin to get her medical treatment. And the hospital was in the exact opposite side of the city as our house. So it would take us about an hour and a half just taking public transportation to get to the hospital. And sometimes my aunt couldn’t stay there for the whole course of my cousin’s treatment because she had other kids. My aunt has seven children, so she had to be home for the other kids. So my cousin would stay with us. And sometimes I was in charge of taking her to get chemo. And now when I look back, it sounds crazy that at 13 years old, I was in charge of taking care of my 13-year-old cousin who was sick. But she and I would get in the subway, ride the subway, then get off, get on a bus, get to the hospital. And then because I was a minor, I actually was not allowed in the hospital, so I had to sneak in. So she would get in, and then I had to sneak in so that I could be with her on the oncology floor.

We we’re children. We didn’t even fully grasp the seriousness of what was going on. So we just sit there and joke with each other, tease each other. It’s some of my fondest memories, but also I saw some of the most disturbing things, like children plugged to all sorts of machines and everything. And it was really scary. I used to be a really, really good science student, but I was like, I couldn’t imagine ever going to med school and witnessing all of that on a day to day because it was heartbreaking for me. So the good news is that my cousin actually miraculously made it. Her cancer had metastasized to her intestines, thyroid. At some point they thought that the cancer was heading straight to her brain. Somehow it didn’t. And she’s 46 and is alive.

Rick Bangs:

Wow.

Liliana Martin:

Yeah. She beat all of the odds. Many of my cousins that got cancer subsequently, some of them didn’t. But I think that’s why I put such an emphasis on my health and to get back to what we were originally discussing. I was just like, “I’ve been doing everything right. How could this be happening to me?” Literally since I was 13, I’ve been taking such good care of my health. Or I learned about myself that I don’t like feeling out of control and I don’t like feeling helpless. It really tested me in ways that I never imagined.

But I think ultimately it was just one morning. And at the time, I didn’t know whether I was going to need chemo or how aggressive this cancer was or what was going to happen. It took about … So I had to have another surgery, the TURBT surgery. So the first one was in June 8th, the second one was July 13th.

Rick Bangs:

Now, are you at the same doctor?

Liliana Martin:

Yeah. The two TURBTs were with the same doctor, same urologist. And then after the second one, they referred me to an oncologist that’s also a urologist. And then I talked to him. And originally I had been under the impression that I wasn’t going to need chemotherapy or what is it? Immunotherapy.

Rick Bangs:

Immunotherapy. BCG.

Liliana Martin:

Yeah. So I thought I wasn’t going to need either one of them, but worst case scenario, it would be immunotherapy. But then once I talked to the oncologist, he said that apparently this cancer is so aggressive and me being so young that he thought chemotherapy would give me the best odds at keeping that cancer at bay. And it was at that moment when I just had this epiphany. I thought, I don’t know how much time I have left. I didn’t know what was happening and if this was going to be it for me, honestly.

Rick Bangs:

Well, and given your family history.

Liliana Martin:

Right. And it also happens on my mother’s side, and it’s people all over the country, so it’s not like you could blame it on environmental factors. We grew up in different sides. There’s clearly some sort of genetic factor happening here, but it’s different types of cancer. Nobody has ever done any genetic testing or digging, so we don’t know for certain, but it’s more than 10% of my first cousins have cancer or have had cancer. So it’s a pretty high percentage within a family. I was scared and I was like, “You know what? I don’t want to feel angry. I don’t want to go outside and see other people and just feel rage because they’re smoking or eating unhealthy food.” Which is what would happen. I would see somebody eating something fried and I’d be like, oh, fuming inside. And I just said, “You know what? I just got to live. I got to get back to just living my life and just being alive. I am alive right now.” And so then my entire outlook changed. And it was almost like just flipping up a light switch and I stopped feeling angry. I guess that was good.

Rick Bangs:

Yeah. No. That is good. That is good. So how did the chemo go?

Liliana Martin:

The chemo wasn’t great. Chemo and I didn’t get along great.

Rick Bangs:

Oh, that’s too bad. Not unusual, but that is too bad.

Liliana Martin:

Yeah. It was a lot more difficult than I anticipated just based on what I had read. And I don’t know if I just happened to feel it stronger. I don’t know what it was. But it was 90 minutes. They would put the chemo medication in. It’s called Gemcitabine or something like that.

Rick Bangs:

Gemcitabine. Yes.

Liliana Martin:

Yeah. That one. So they would put it in for 90 minutes. The first time I had to stay at the doctor at the office just so that they could monitor me. And I could only do 45 minutes. I was like, “I’m going to die here.” I was covered in sweat. I was just like, “This is just not working.” So then turned out that apparently I drank a lot of water. Too much. So on the days of chemo, I had to really dehydrate myself basically.

Rick Bangs:

Wow.

Liliana Martin:

So my bladder wouldn’t fill up so quickly. Literally, I’m not joking. I carry around a massive water bottle everywhere I go. It’s attached to my hip in a way. And everywhere I go, I have my water bottle and I’m always drinking water. And so it was really hard to dehydrate myself.

Rick Bangs:

So the Gemcitabine was put into your bladder?

Liliana Martin:

Yes.

Rick Bangs:

Okay. So they obviously didn’t want it diluting it, which makes sense. You had a rough time, but are you still doing any running?

Liliana Martin:

Yes, I was. What happened was … And that was my main concern, as soon as the oncologist mentioned chemotherapy, I was like, “Can I keep running? Please say yes.” So he said, “Yes, you can keep running.” He said that in fact, running would help me stay strong and just psychologically also fit. And that it would actually help me withstand the treatment a lot better. So basically what I started doing was I would schedule my chemotherapies on Fridays and then I would be ready to run Saturday. But if I didn’t feel well on Saturday, then I could push it back to Sunday, and then I could run every day before the chemo. But that gave me some flexibility. And I would schedule my chemos first thing in the morning because that way I wouldn’t have had so much water already to begin with, and then I could continue just to have water afterwards, which is what they recommend after the intravesical chemotherapy. That’s what they call it when it’s just in your bladder.

Rick Bangs:

That’s right.

Liliana Martin:

But man, it just felt awful. It was like 90 minutes, but felt like 90 years in hell and I am not exaggerating. It was awful. So I had to come up with just different coping mechanisms to get me through the 90 minutes and not think so much about it. So I started focusing on what are the things that I like doing the most? And I would try to do those while I was having the chemo. So at first they started letting me come home with the promise that I would keep the chemo in for 90 minutes. And so we would set a timer on my phone, and so I would come home, and then I got to be with my dogs and my cats, and that made a huge difference because they’re the best nurses and they would just sit with me the whole time and give me all the love. So that really, really helped and distracted me.

Rick Bangs:

So you live close to the clinic?

Liliana Martin:

Yes. I’m really lucky. I’m very fortunate. I live within 10 to 15 minutes from the hospital. So yeah, it was actually very easy to drive there in the morning, get my treatment, and then drive back home and then just stay at home and hang out with my dogs and my cats.

Rick Bangs:

Sure. Sure.

Liliana Martin:

So that helped. And then another thing that helped was a song. So there’s this song that is called I’m Unstoppable, and I really like the lyrics. And so I would just play it on repeat for 90 minutes. I’m unstoppable, I’m unstoppable. And it just became my theme song for my treatment.

Rick Bangs:

That’s great.

Liliana Martin:

And then another thing was I bought myself a pair of socks and I would wear them every time that I had treatment. And the socks … Actually, I just happened to find them by pure chance. One time I was just browsing a store close to my house and these socks say my bladder owns me. And I was like, “This is perfect.”

Rick Bangs:

Oh my gosh.

Liliana Martin:

I’m actually wearing them today.

Rick Bangs:

Are you?

Liliana Martin:

Yes.

Rick Bangs:

It’s appropriate.

Liliana Martin:

It is very appropriate. So I actually thought of buying some for the team that helped me at Northwestern, but I haven’t been able to find the socks again.

Rick Bangs:

Yeah. Yeah. I can’t imagine those would be easy socks to find. Wow, that’s great.

Liliana Martin:

Yeah. It was divine.

Rick Bangs:

Yes, obviously, obviously.

Liliana Martin:

Yes. I kept training and it was very hard some days. But let me tell you something, Rick, about marathon training in a crazy way it actually gave me the mental tools to get through the chemo. And I didn’t know that when I originally started running long distances. But when you’re running, there are days that the runs feel easy and you feel like you can run forever, and there are days that the runs feel really, really hard and you don’t know why. It is just the luck of the day. Things happen. And I would always tell myself, slow miles are better than no miles. So that’s how I am able to get through my marathon training, just repeating that mantra to myself, slow miles are better than no miles. Slow miles are better than no miles. And it was the same thing with my chemo. I just had to keep putting one foot in front of the other. There were days that the chemo didn’t feel as hard and I would finish chemo and then my husband would say, “Hey, do you want to go and get a coffee?” And there’s one of my favorite coffee shops, and we would go and celebrate and get my favorite coffee. And it was an uneventful day. And there were days that the chemo was really, really, really hard and would have me bedridden for two days.

But it was so similar to what I had been training now for two years that I just kept telling myself, just keep putting one foot in front of the other and you’re going to get through this and everyone, every chemo that you do, you are going to step closer to the finish line.

Rick Bangs:

You’ve described some wonderful coping mechanisms, so thank you for doing that. Okay. So I want to talk a little bit about telling other people because when we get diagnosed, we have to decide who gets to know and when do they know. And I know I personally went through that dilemma. So talk about how you grappled with it and what you decided.

Liliana Martin:

That was actually one of the hardest things to work through. I now know that if I could go back in time, I would actually do things a little bit differently in some ways. So what I came up with at the time was that I was going to keep my circle very, very, very close. So it was just immediate family and my closest friends. And so it was just really just a handful of people in my immediate family, my mom, my dad, my siblings, and then a couple of friends. I did not tell anyone at work because I was new at my job, had only been working there for a few months. I didn’t feel comfortable with anyone. I didn’t know anyone well enough to know how they would react to such news, and I feared that there could be biases against me. I didn’t want anybody to think that I couldn’t do my job or that my job was going to suffer or to grade me on some different scale because of whatever emotions they had with regards to cancer. So I kept it to myself and I scheduled my chemo treatments … I purposely fixed my schedule so I wouldn’t have to work on Fridays. And so that way I would have my chemo treatment on my day off and nobody needed to know anything about it.

Then later when I was told I would need chemo, I told even less people because … I think that one of the things that I realized is that I think people come at it with the best of intentions, but just sometimes they don’t know how to process such news. And each person has their own different coping mechanisms and different experiences around it. So I felt like with certain individuals, it became about me taking care of their emotions because they were so affected by my diagnoses that … And it was like, “Oh my gosh, what can I do for you?”

Rick Bangs:

Yeah. Yeah. I know. Been there.

Liliana Martin:

It just became really hard. And so then I decided, you know what? I love them, but they’re not the right people to tell right now because right now I need people that are going to be able to offer me love and support, and I cannot be spending my limited emotional energy providing support to them. And so that’s why once I went through chemo, I limited even more and I think that was the right decision because then it gave me that freedom to not have to be the caretaker of others’ emotions.

Rick Bangs:

Is that where you are today?

Liliana Martin:

No. So once I completed chemo … So let me backtrack. So I was doing weekly chemo starting mid-August of 2022. I finished my weekly chemo a week ahead of the Chicago Marathon 2022. I ran the Chicago Marathon and completed it. And I was very, very slow. I am the proudest that I’ve ever been in myself. I like to think of myself as a bee or maybe an ant. I work really hard. I like putting my best foot forward just in everything I do. I’m very conscientious and dedicated. And when I’m doing something, it’s just like I’m going to do it just to the best of my ability. And that’s what it felt like. I could not have run a better race and I could not have been a better sport while I went through chemo. I did the best I could under the circumstances. And for that, I feel just so proud myself that I was able to do that. We don’t get to choose the cards that we are dealt, but we get to choose how we play them. And I think I played the best game that could have been played, for sure.

Rick Bangs:

Sounds that way. Sounds that way. Okay, so now you talked about your cousin and the cancer experience there and the challenges she faced and so forth. What about your other relatives? Any thoughts? Can you talk about their cancer experiences and how they might be different from yours?

Liliana Martin:

From Yes. So like I said, my cousins are all over the country in Mexico and they’ve had different types of cancers. My cousin Elian passed away in May of 2016, and he was 14 years old. He had Hodgkin’s lymphoma. We had been told that he’s young and that it was a good prognosis, but just the way that the treatment unfolded, it is just so different from how’s done in the US. I think that just the resources and information available for patients is limited in comparison to what we have. Even that, just being able for me to read and speak and understand English just puts me already ahead of the game because there’s so many resources in English versus if I was just only searching in Spanish. Even though it’s one of the most spoken languages in the world … I think it’s like after English it’s Spanish, but still the amount of resources available are minimal in comparison to what you find with English. Also, just access. Like I mentioned earlier, I live really close to one of the top hospitals in the country. How lucky is that?

Rick Bangs:

10 minutes away. Yeah.

Liliana Martin:

It’s so close and they happened to have some of the just best doctors with the specialties that I needed to be able to get better and heal myself. And how lucky I am that my job offers health insurance that covers that great hospital. So it’s just all these really, really fortunate things happen for me that I know many others don’t have. For example, my cousin Elian, he had to travel to Mexico City again, because in Mexico everything is centralized and the majority of resources in terms of the best hospitals and treatments can be found in the capital. But outside of that, you’re a lot more limited. And also just the medical system in general is completely different. Even the relationship between patients and their doctors, it’s a very, very different relationship.

I think that in the US as a patient, you have a lot more agency and you can advocate a lot for yourself, seek out answers and have discussions with your doctors where the relationship with your doctor is not patriarchal or hierarchical. They see you as an equal and they talk to you as an equal. And in Mexico it’s more patriarchal. So it’s almost like they tell you what to do and you do it and that’s it. There’s no discussion, no questions. And I think a lot of those factors actually affect the quality of treatment and basically your odds of how well you’re going to do after your treatment. And unfortunately, I have seen my family be affected by that.

Rick Bangs:

Makes perfect sense. So I want to talk about your bladder cancer experience up through today. And we talked about how you coped with it and some of the challenges you faced, but I want to step back and talk about what would you want other people to know? What advice would you have for other people who are facing a bladder cancer diagnosis?

Liliana Martin:

I think one of the most difficult things to come to terms with is just this acceptance. Just accept what you’re dealing with. Don’t fight it. I’m going to say something, and I don’t mean to minimize anyone’s experience and suffering because having had the bladder cancer myself and going through the treatment, that’s not my intent. But what I learned is that cancer is not the worst thing that can happen to me. I learned that if it had been my daughter instead of me, I would have suffered immensely more.

I learned that one of my neighbors and friends, she and I used to do Pilates before the pandemic, she had a brain tumor and it was not cancer, but it left her blind and unable to walk because it had grown and it had gotten all over her brain basically. So I guess what I’m trying to say is to accept your situation is helpful and also to keep perspective. And that it might not be the worst that could happen and that if you see it that way, perhaps it seems more manageable. It seemed more manageable to me to think about it that way for certain. I think another thing that I would advise to people is just don’t take no for an answer. If your gut is telling you that this is not normal or should this really be happening, if you’re not sure, go see another doctor and another one and another one.

It took me a visit to the primary care physician, to a nephrologist, a visit to the ER and a visit to my primary care doctor to finally get to a urologist. And so just don’t take no. Keep searching for answers. Especially for women. It’s very easy to be dismissed as you’re exaggerating or this is just probably a UTI or are you sure you’re not having your period if you have blood in your urine? I’m like, “I’m 46 years old. I know my period. I know the difference, so please.” And so just basically just be your number one cheerleader, be your number one supporter. And for better or for worse, there’s Dr. Google. I know it can give a lot of really bad scary news, but do your own research and learn to advocate for yourself because that’s your best odds that you’re going to get to the bottom of it.

I’ll say another piece of advice that served me really well is just remember to have joy and to find joy just in everyday life. Actually, one of the gifts that cancer gave me was to actually slow down, just run slowly. Look at the lake, look at the sunrise, stop and take the photo if you want to. I used to not like running in the winter, and it was while I was getting chemo that I started for the first time to train through the entire winter. And I ran the Paris Marathon in 2023 after completing my full chemo treatment. I never felt more alive. And I know it sounds crazy and masochistic, and maybe it is, but I felt alive seeing the snow and how much life is happening if you just look around. The birds and the squirrels and the bunnies and it’s all going on around you, and it’s there all of the time. And sometimes it’s so easy to forget about it. To not look because you have to get to the grocery store, you have to get to work, you have to do A, B, C, and all your list of to do things.

So just remember to slow down and just find joy and all the stuff that is around you. And I know it’s a lot of lessons, but they actually really helped me, and I use this with my friend. One of my friends is at the hospital right now, and I used it yesterday with her. But find a way to love your cancer. And this one took me a while, but it happened during a run for me. And I just start thinking, if I were to fall right now and scrape my knee, I could either say, “Oh, you stupid knee. Why do you have to hurt?” Or I could tend to my knee and take care of it so that I would heal. And I thought, well, that’s what my cancer needs and that’s what my bladder needs. Instead of being angry at it or frustrated with it, what if I just say, “Hey, I know this is really hard and I know it’s hurting, but you’re going to get through it.” And I started, instead of seeing the chemo as something scary, I started thinking, this is my cure and I’m going to embrace it. And it helped me just psychologically to get through the tough moments. To just feel myself with love and gratitude and try to, I guess, send those positive thoughts and feelings to my bladder and the cancer so that it would heal.

I guess last but not least, I’d say just focus on the small things. A lot of times it’s really easy to forget to eat a nutritious lunch or to drink your water or to sleep eight hours or maybe connect with your loved ones, but those are the little things that make the most difference and will make the most difference every single day. It’s not just the big milestones or the big achievements or the big promotion at work, or even just the 90th minute of my chemo. It’s doing the little things every single day because those are the things that just kept me mentally strong and physically strong.

Rick Bangs:

This is such great advice. Wonderful. Thank you. So Liliana, I want to thank you for sharing details about your bladder cancer journey and some of the challenges faced by women and athletes with bladder cancer. If you’d like more information about bladder cancer, please visit the BCAN website, www.bcan.org. Moving on, in case people wanted to get in touch with you, do you have any information you’d like to share with them?

Liliana Martin:

Yes. I can share my email address in case people have questions. My email address is my name, lilianamartin@me.com. I’m going to spell it just because a lot of people misspell my name.

Rick Bangs:

Please.

Liliana Martin:

It’s L-I-L-I-A-N-A-M-A-R-T-I N, @me, M-E.com.

Rick Bangs:

Excellent.

Liliana Martin:

You can also find me on Instagram. My Instagram handle, I guess that’s what it’s called, is-

Rick Bangs:

Yeah. Yeah.

Liliana Martin:

Betteroffrunning. That’s one word without spaces. So betteroffrunning. And I have some of my cancer journey there, a lot of exercise and nutrition motivation and so feel free to follow my account and send me a direct message if you want to connect.

Rick Bangs:

Excellent. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Be sure to like, comment and subscribe to this podcast so we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Liliana.

Liliana Martin:

Thank you.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.