Charlie Agurcia: From Hopeless to Courage, Empowerment and Hope

Podcast Transcript

LOREEN:  Welcome to Pep Talks, A Patient Experience podcast where we share stories of Promise, our culture of connection and care.

In this episode, we hear from Charlie Agurcia, a former diplomat and a Patient Advisor on our Patient and Family Advisory Council. His journey starts with the diagnosis of small cell lung cancer while living in Honduras, which left him feeling lost, scared and like he didn't have a voice in his care. After transferring his care to Moffitt, Charlie found himself in an environment where he felt empowered and hopeful with the courage to live each day to its fullest.

CHARLIE: Hi, my name is Carlos Agurcia. My friends call me Charlie. I was born in Honduras. My dad's from Honduras. My mom was American. I grew up in Honduras for the most part and had a nice life where I went to law school and had a bunch of odd jobs and then worked as a diplomat for ten years. And then right around the time I was about to turn 40, I got transferred from Belgium to Honduras and I was feeling pretty lousy. It kind of hurt whenever I coughed and eventually it grew to hurt every time I breathed. I went to several doctors over the course of a few weeks and then right on the same week I turned 40, I was diagnosed with small cell lung cancer, which was not the best 40th birthday present ever.

Once that happened, everything moved rather quickly. I don't really remember having many choices. I just remember being told This is what's next and this is what you have to do next. This is what you have to do next. So, I started treatment in Honduras. It was not the best of experiences, but it was what it was, you know? And the only thing that I could do is go through treatment. My tumors were inoperable, so operation wasn't an option. It was just chemo and radiation. And when I went to radiation, I was told that I didn't need radiation right away, contrary to what my oncologist had said, which was very confusing. And I found out later that same day that the real reason they said I didn't need radiation was because the radiation machine was not working. It had broken down. They didn't know who or when it was going to get fixed. Therefore, my health priority was not a priority. It was just not going to happen. At which point in time my parents and siblings kind of decided for me and we packed up my bags and moved up to Sarasota, where my sister lives, and I came up to Moffitt for treatment.

We found out about Moffitt through my sister, the one who lived here in Sarasota. I have two sisters, the older and the younger, and my kid sister did her research and I think a big factor in me coming to Moffitt. It was when she contacted the International Relations team and they just did such a magnificent job of transferring me over, you know, making sure that they had all of the information from my treatment and from my diagnosis in Honduras and still managed to bring it over here and me not have to start from ground zero when I walked in the door. So, I wasn't feeling very well; I was out of it for the most part. I just felt nauseous and bad and kind of in pain, but not in pain. It's the first time ever I traveled. Having been a diplomat, I traveled all over the world, but I'd never traveled using a wheelchair and having to not fend for myself.

And then I remember the first day that we drove up from Sarasota to Moffitt, and I really had no idea what to expect at this point in time. I remember being scared and confused and not knowing really what was going to happen. I guess I was rolled in by a wheelchair through the front doors of Moffitt, and we were greeted by Gina El Mouallem from the International Relations team. She was literally in the lobby waiting there to greet us. I was astounded. I you know, I just looked around at the open spaces, the clean environment, the professional people walking around.

And then this, you know, this woman who managed to smile and yet expressed concern, which is a very difficult thing to do. I remember Gina's face and and I remember that it made me feel welcome because she spoke to my parents. She introduced herself to me. And it was, I think, the first moment since I'd gotten diagnosed that I thought, hey, maybe, you know, maybe there's a chance here that something might actually go the right way.

One of the things about Gina that impressed me was her following up on.  Gina to this day, and we're talking I'm talking to you guys four and a half years after I rolled into that lobby. Gina was still in contact with me. She always checks up on me, says, how are you doing, Charlie? She grabbed hold of me, and she hasn't let go. And I really, really appreciate that. She's awesome.

So, after I met Gina or Gina met at us in the red lobby, I was wheeled over with my parents in one direction to go get scans and tests and bloodwork, and my sister kind of walked off in a different direction. I was in the care of my parents and so she was sort of lost, and that is when she came across a Moffitt employee with a name tag who invited her to patient and family orientation and said, come to breakfast.

She doesn't remember what she ate, but that there were nurses and patients, and caregivers present at this orientation. And she was able to talk to this girl who had lung cancer and was around my age, and she was able to kind of talk to her and get a sense of what she was going through and what she was feeling. You said she said it was the first time she started understanding my perspective a little more because it was a woman who was an independent professional, and they helped her gain an understanding of what the patient experience was and what the caregiver experience was. That really had an incredible effect on the way that she was my caretaker.

 And let me tell you, I was not the best patient. I was mean to her. I remember yelling at her for stupid mistakes or out of frustration. Um, normally I'm, you know, the calm, collected member of my family. I'm the one who brings people together. And I went off the deep end, and she wore a large brunt, of the worst parts that a cancer patient can produce. And had it not been for the preparation she got at that breakfast she went to when she was lost, it would have been a different story. And I mean, I'm grateful to her for her amazing, incredible, just performance, work, care, follow up. And I'm grateful to Moffitt for helping her find the tools to be able to handle this in the best way possible.

One of the few things that I most had difficulty dealing with when, you know, with my disease and while I was sick, was the loss of control, the loss of independence. I like I mentioned, I used to be a diplomat, so I lived all over the world. You know, I had to figure stuff out on my own in places where I didn't even speak the language. And I managed to, you know, not do bad. But then I got sick, and all of a sudden, I. I lost control of everything. I honestly don't remember making any decisions regarding my treatment.

I remember sitting in the thoracic oncology lounge clinic waiting lounge, and I was there with my parents. And one of the things that frustrated me the most would be that we would go into my appointments with my oncologist, either the radiologist or the thoracic oncologist. And my parents would either misinterpret, misunderstand or refuse to listen to what the doctor was saying.

I was not happy feeling that I had no control and absolutely anything. And then a nurse came up to me. My parents stood up and she didn't address them. She addressed me. And she asked me, who do you want to meet with the doctor? You can go by yourself if you want. And it's something. It's a it's a silly question now that I think of it. It's not even that big of a deal.

Sounds normal, normal and commonplace and ordinary. But to that Charlie. That Charlie back then who had no power, no control, who felt completely, completely powerless. It was this shining light of. Of control. Of of of of reason, of illumination. At that moment, I felt like that nurse threw me a lifeline. She saw me struggling. She saw me struggling. She saw me in in a hole. And she said, you can make this decision. You are empowered to do so. You're not your disease. You're not your medications. You are your own person. And naturally, I said, I want to meet with the doctor on my own, much to my parents’ chagrin. And the nurse said, it's his right. And he can go see the doctor on his own, which I did. And you know; it didn't take away any of the physical symptoms I was having. But for me, that that one moment was a game changer. That's what it was. It was a game changer because it's the first moment I remember that I finally took charge of my treatment and my disease. And one thing that Moffitt has definitely focused on and always, always made me feel is that I was a person that I wasn't my wasn't my disease. I wasn't a number. I wasn't just another patient. I was Charlie. And Charlie had feelings and rights and and a reason to live. I had been given the choice of taking control, and I was able to do so. And look at me now.

 So, it's been a few years now since I finished chemo and radiation and getting past that wasn't any less difficult. Recovery is just as hard as treatment. It hasn't been easy. It's been tough, but it's possible. Nowadays, I'm an actor in Sarasota. I do theater and I enjoy seeing audiences and I enjoy having the energy and the ability to be able to make art. It makes it fun. Rumor has it that I might even go back to diplomacy next year. What's amazing is that I haven't met anybody who's survived small cell lung cancer as long as I have. The odds of doing so are pretty low. That being said, I wouldn't be here without obviously my family and caregiving team. But the Moffitt team, every single person that I interacted with every single time that I came here, every time I called, every time I needed something, a smile, gesture of encouragement or a simple question like you can who do you want to go see the doctor can make such an amazing difference, and I will never, ever get tired of saying thank you and being grateful and doing what I can to help out when I can for people in my situation or similar.

And that being said, if I have a message for anybody out there who has small cell lung cancer or is battling cancer in general, don't lose hope. Hope is the most important thing you need to hold on to. And after you realize that there's hope, also realize that you're in control. It's your body. It's your life that you're fighting for, and it's worth fighting for because it's a beautiful, beautiful world out there.