Heidi Bragg: These are My Moffitt People

Heidi Bragg, is a survivor of 3 different types of cancer, including a cardiac sarcoma that brought her to Moffitt. For Heidi, the combination of clinical expertise, partnership with her treatment team, inclusion of her family, and being cared for as a human being – created a very strong bond that fortified her for the fight of her life.

Thank you to our Storyteller:  Heidi Bragg

To our Narrator/Host: Loreen O’Brien

And to our Production Team: Kathi Barden (podcast project leader), Anne Bidelman, Donna DiClementi, Robin Gordon (Patient Advisor), Randy Isaacson (Family Advisor), Loreen O’Brien, Terry Payton, and Cristina Perez

Podcast Transcript

Hi, I'm Heidi Bragg. I'm a mom and a wife and a communications and marketing expert. My family and I now live in Eugene, Oregon, but we lived in Northport in Florida when I was getting treatment at Moffitt. I'm a three-time cancer survivor, and that's three different cancers, not one three times because I always say #overachiever because, you know, I had to go above and beyond. I guess the three cancers I've had are first adenocarcinoma of the colon, second a cardiac sarcoma, and third, uh, urothelial cancer. And the first and the third are related to Lynch syndrome, which I have, which we discovered when we did analysis of the tumor from my first cancer, the colon cancer. I was diagnosed with colon cancer back in 2013. And I had a complete colectomy. I had a J pouch and an ostomy bag for a while. That really makes you feel like a woman. It was not my favorite time.

Um, but everything healed, and my insides were put back on my insides and I was going on with life, and I was just about at my five-year mark and I had some weird symptoms. I had something that I thought might be related to migraine, where I could think of words, but I couldn't articulate them. So, I called my neurologist and he said, you've had some weird things with migraine before. If it happens again, go to the E.R. One day I could not lift my arm to sign a receipt. And so, I called my husband and said, we need to go to the E.R. My brother's an ER physician. And he said, don't leave until they've done these five tests. And it was like a CT, MRI, echo, all those things.

The next morning, they did the echo and my cardiologist, my new cardiologist, because I've never had cardiac problems, came in and said, you have a massive tumor in your left atrium. And we would like to do emergency open heart surgery tomorrow. And please don't get out of the bed without a nurse there and just move as little as you can, because we don't want you to have a heart attack or stroke out, because that tumor, which ended up being a seven-centimeter tumor in my left atrium, was almost completely occluding the flow of blood through my atrium. So, we knew this was something rare-ish. They thought it was a benign mixoma, but when they took it out, they realized it was not and it was malignant. And my surgeon said it was the biggest patch he'd put on a heart. So, then we're thinking, what do we do?

I had an oncologist who'd been following me for the colon cancer. I went to her as soon as I was healed up slightly and she said, this is basically 100% fatal and this will be the thing you die of, most likely. She's a good friend and I appreciate her being straight with me, but I'm like, what now? She said, I would go to Moffitt. Go to Moffitt. Talk to them, you know. See what they can do to help prolong your life.

And so we came up here and my first interaction was with, um, Doctor Andrew Brohl in the Sarcoma Clinic. We're sitting in that room with Doctor Brohl, and I asked him, why would I want to go through treatment? Because, again, this is not how I want to spend the last few months of my life because, you know, chemo can be really hard on your body. And he said, because there's this tiny window. And if we hit it, I remember him making a triangle with his hands like a slice, a tiny slice of pie, and he said, there's this tiny window, and it's really hard to hit, but if we hit it, the results can be fantastic. And I'm like, all right, then I'm in.

And at this point, our kids were very little when I had the first cancer. But at this point, I believe they were, um, 14, 16, 20 and 24. So we asked him, what do we tell our kids? My husband Kevin said, what do we tell them? And he said, I would tell them this was July. I would tell them mom's probably going to be around at Thanksgiving, but we don't know about Christmas. That part of telling the kids was the absolute worst moment.

But the fact that Doctor Brohl was, um, honest with us and gave us that information to give our kids was reassuring for them, because in every case where I've spoken with people or talked with friends, kids, imagining what's possibly happening is so much worse than them having some facts and boundaries around what they need to think about at that time. And so I was, um, I did six weeks of radiation, you know, kind of standard five days a week. Six weeks. Got 60 gray straight to the heart, which they normally try to avoid because my margins from that big bovine patch still were not clean. So we did the radiation. And then I did, uh, nine weeks of chemo and almost six years later, I'm still here.

So when people say, I'm a person of faith, when people say thank God, I'm like, no, no. We have a conversation daily because I'm grateful to be here. I got to see children get married. I got to be there for college graduations. I've gotten to do a lot of really incredible things that six years ago, I didn't know I'd get to do.

So when you're coming here every day, five days a week for radiation, for six weeks, you get to know your radiation techs. And, uh, I had two in particular that stood out. Brian and Jolley. Her first name is Michelle. She doesn't like that. So it's jolly. And in fact, I saw Brian today and just said, hey, it's like, hey, why are you here? I'm like, it's just a checkup. But they would take me in, get me lined up, and they knew I liked 90s dance music. And so they would put on 90s dance music every day for me while I'm lying there looking at that beach scene that you see when you're on your back in your little radiation session and just that little, um, personal touch that they had that cued up for me every day meant a lot. Jolly and I would talk about bands. They just again, it was a very professional, um, accurate, precise process that was humanized in a way that made me feel like I was just coming to see some people I knew, and yet I was going to have to be on the table for a while. But it took the weirdness out of it to a great degree, but it just felt very comfortable after the first couple of times.

Uh, the first day I was here, so I'm meeting with Doctor Brohl. At that time, Anya was the nurse I was seeing. Um, we decided to go through treatment. They said they wanted to do a foundation study on my tumor, which is prohibitively expensive. And so they said, we're calling in our social worker, Olivia Luginski, who came with the forms and helped me. They all helped me fill everything out. Olivia talked about financial aid things with us. She was just a partner in this care team from the beginning.

So one of the things Olivia mentioned when we came in is talking about perhaps getting a mental health counselor or some kind of, um, behavioral support that could help us through this process. And we had already established with a provider. But I liked that they talked about treating the whole person. She's the one who told me about there's a massage clinic across the street. You can do yoga there, various other support things. They told us they had a program for children of patients called Families First. Our kids weren't interested in going, but it was nice to know that that was there as a resource. And since then, she and I talk all the time. I'm like, hey, do they have an updated hotel list? Because lots of hotels around here offer a Moffitt rate. And that's really, really helpful when you're coming and staying for a week. Or, uh, she's the one who told me about PEP Talks. She's like, I think you should talk to these guys because you've got a story. And so that's why I called you guys. Uh, she's helped me with my podcast. She's been on and talked about resources that cancer patients can look for from their cancer centers in their area. So I just liked it. It felt like complementary care from day one.

And again, it's a piece of this whole multifaceted sort of tapestry of care that's woven together by a lot of individual threads. And I think that's a point that needs to be made, whether it's environmental services or it's people coming in with therapy dogs, which I loved, or it's people telling me about the resources that are available, they may not feel like that their one discreet moment makes a difference, but I don't think they realize how the aggregate of all those moments creates something really extraordinary for patients and their families. To have these little support systems come in through various people helps lift you up when things feel really, really heavy and debilitating and hard to carry on your own.

So ever since this. Ever since I was diagnosed the first time with cancer, especially with this hardcore middle cancer I had been feeling… I call it little divine taps on the shoulder like you need to find some way to tell this story. And then a coworker said, what about a podcast? I'm like, what about a podcast? I don't know how to do that. So I got some help from some friends and bought some equipment and started a very highly under produced podcast, and I purposely called it life, cancer, etc. because for me, cancer comes, but it's a part of my life, but it is not my life. Cancer is a piece, but it's not the whole. And I'm so grateful for all the people who have generously shared their stories with me. It's been a labor of love. It's a passion project for me because I don't want it to be that kick in the teeth for people quite as badly. You're going to get that visceral feeling like your world is dropping out when you get diagnosed. But there are people who've been through it. I want to show those stories.

People ask me every time, why do you fly back to Florida to get treatment? You live really as far across the country pretty much as you can. And I tell them, because these are my people and my people are invested in me, and I would bring my kids and my husband in and say, okay, you guys, these are the people I'm living for. You're brilliant. You figure it out and tell me what to do. But here are the stakes.

This is why I want to stay around here. And it only takes somebody coming with me once. Because I have to have someone with me after procedures. It only takes a friend coming once to go. Oh, I totally get why you go back there. There is something about this place that is unique. I've been to different cancer centers and seen different approaches and seen very caring people working in oncology. But there is something about the way things are done at Moffitt. You can tell that your hiring is not just for skill, but for value fit and culture fit. And that dedication to patient centered care, patient and family centered care really comes across. And for us, it came across from day one.

So if I had the opportunity to speak to team members as a whole, regardless of whatever their role is, this is what I would tell them. I don't know if they realize that from when you walk up and drop your car off. If that valet is upbeat and says hi and opens the door for you and takes your key, and then you walk in and you check in and those people are upbeat and you develop a relationship with them, and then you go back with your MA. And the MA is another touchpoint making you feel cared about as a person. Then you're with your nurse, then you're with your provider, then you go to the cafeteria. Then housekeeping or Environmental services is coming through, and they're talking to you and asking how you're doing. I don't know if they realize individually how much that makes a difference, because it's the aggregate of all those positive acts over the course of a day's visits at Moffitt. That change. That changes how you feel about that experience that you come out of here, even though it's hard, even though sometimes it's depressing. But you come out of here feeling cared for and acknowledged as a fellow human on this planet.

I love my Moffitt people. They're my people. Andrew Brohl is my medical oncologist. Arash Naghavi is my radiation oncologist. Kaitlyn Coucoules his PA is my PA. Colleen Veloski and Sarah Logan in endocrinology. They're my people. Phil Spiess. My surgeon. Yoly Pina is my neurooncologist. These are my people. And they are my team. And I feel a very, um, personal and emphatic connection to them and the not just the care they provide medically, but the care they provide for me and my family. They're my Moffitt people.

Music Credits

Music from #Uppbeat (free for Creators!):
https://uppbeat.io/t/ben-johnson/woke-me-at-the-break-of-day
License code: WKFESBO1FPM56MTF

https://uppbeat.io/t/bpmoore/first-light-orange-and-mountains-rework
License code: VF23HXTNEHGHLESX

https://uppbeat.io/t/luminbird/secret-room
License code: JD3W3IMK2TPAA4QW

https://uppbeat.io/t/infraction/november
License code: RQCHSBFZLNMEOUDW

https://uppbeat.io/t/simon-folwar/night-of-wonders
License code: XSETAIVZJZDC5IJL