Transcript of I Am a Triathlete and a Bladder Cancer Patient Part 2

Listen to Parts 1 and 2

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 bcn.org.

Rick Bangs:

Welcome to part two of my conversation with bladder cancer patient and survivor, Damon Thomas. If you have not already listened to part one, you can find it on your favorite podcasting platform. In today’s segment, I talked with Damon about his nurse navigator, BCAN board member and previous guest on this podcast, Karen Sachse. And we also chat about Damon’s views on different disparities in bladder cancer healthcare. Here’s part two.

So I want to go back to when you were diagnosed and we all go through this, “Who do I tell? Do I tell anyone? When do I tell people?” Can you talk about how you dealt with those questions?

Damon Thomas:

Well, it’s pretty easy. It was immediate family only, and was even more narrowly defined as that. I didn’t want to tell anyone. It didn’t have anything to do with about being embarrassed about having bladder cancer. I wasn’t sure how people would respond to me, just the fact that I had cancer and it was personal and private. It was the beginning of the journey, and I didn’t know how long that journey was going to be. I didn’t know if it was one month, three years, two years, 10 years. I just didn’t know. I really kept it to my brother, my wife, my children, and my sister, and that was it. There were two very close friends that I have known for over 20 years, I shared it with them, and that was all under confidence that I knew that they weren’t going to share that.

That’s where it stayed for, geez, for a year. I shared it with my triathlon coach, obviously, because in terms of working out, but I didn’t share it with any team members. They just knew that I was ill. I just slowly, surely just let a few people know, always guarded. I didn’t share it with the people I worked with professionally.

Rick Bangs:

We all have to calibrate to what’s right for us. I know you believe in building a strong medical team. What advice do you have for people? How did you build your team and how might other people leverage your advice in that area?

Damon Thomas:

I’m probably a little different than most. I know I am, because I’ve heard this from my current primary care physician and my wife. I’m very direct. I understand that medicine is a business and doctors are there to help you get better, but it’s a business. Most people look at going to the doctor, either they don’t realize that or take that factor into consideration in their interaction. The answer to your question, how did I go about building my team? I wanted to make sure that whoever was treating me took me seriously, was listening to my questions, responding with well thought answers.

Rick Bangs:

Yeah. Not cutting you off.

Damon Thomas:

No, not cutting me off. Giving me eye contact, building a rapport. The office was functioning well. They were making sure labs went out when they were supposed to, did not happen for me on two different instances. I fired that particular doctor and switched. Then after that, I gave a little bit of buffer, gave them the benefit of a doubt, but there were a lot of other factors that came into that. But I wanted to have a specialist that took me on personally, wanted to make sure I was going to do well, would answer my questions and be relatable. Whoever they were referring me to, I looked to see if it was part of their medical group as just an internal source for keeping the revenue in the practice, or is this person really the best person for me to be referred to?

So down to that level of the next care provider that was going to be interacting with me, I wanted to make sure it was about me, their credibility, their experience, and not trying to just maximize revenue for the practice. At the end of the day, I just wanted to make sure that I was the person who they thought was the most important part of that visit, not having much time they’re spending in the appointment and having to deal with Damon, asking questions or challenging them. One of the things that came up with my doctor, at the end of each cytoscopy, she would simply say, “Are you going to continue the BCG treatments?” And the first time I said, “Well, yes, of course.” And then the second time, “Yeah”, third time, “Why wouldn’t I?”

Fourth time it’s like, “Why wouldn’t I continue? I’ve told you each and every, why are you asking me that question?” Not with that tone, but that’s what I asked. She said, “Well, sometimes patients say just don’t come back.” And I told her, I said, “This is my life. I happen to have good insurance and I’m able to afford to pay for my care. However, if I were not, and as long as you were seeing me, if I had to go bankrupt versus staying alive, or dying, I’d go bankrupt.” I think it’s a no-brainer. Please stop asking me that. I really appreciate if we just not have that question come up again, because the same response, yes, I’m going to continue. I took that as her not really listening to me and not realizing and not treating me.

Every other person, I felt like, okay, this is another patient, another patient’s question I ask, and not really looking at me as the client. So in my professional life, I help advisors be more successful in their practices with their clients. And part of that is connecting. And it doesn’t matter if you’re a financial advisor with an individual client, it should be a doctor with that patient. That patient should be deciding if they want to work with you just as much as you’re deciding if you want to keep that potential patient on as a patient or client. And when there’s a disconnect perceived by either one, it’s time to part ways, because it is only going to get worse, at least from my perspective. And so, that plus some other factors, I just decided what’s best to part ways.

And I realized in regrettably now would’ve been treated sooner, that I thought it was probably time to get a second opinion. And I decided to have a second opinion, went through a NCI institution, happened to be Johns Hopkins, and had a second opinion, and just found out that I was misdiagnosed. Not that I didn’t have bladder cancer, I just didn’t have high grade non-muscle invasive bladder cancer. It was more low to moderate, which meant the protocol change, which means I didn’t necessarily have to have BCG. However, the amount of BCG I had, some would say I was overtreated. In fact, I was told I was over treated. So I’m actually currently in the every six month follow-ups period with cystoscopies. So actually I have another six month follow up coming up in a week.

Rick Bangs:

Wonderful. Good luck with that.

Damon Thomas:

Thank you.

Rick Bangs:

You mentioned Karen Sachse, and those of us who have known Karen for some time are pleased to know that she’s now a BCAN board member. And you mentioned that she’s an oncology nurse navigator. And so, she assisted you in this process. So talk a little bit more about your involvement with Karen. What did she do for you?

Damon Thomas:

Karen listened. Karen listened to questions I had regarding conversations with my physicians or research that I’ve had, or any type of wild I idea may have grabbed offline about how will this affect me? What’s going to be the impact? What’s the survival? In the beginning, it was more about survival and best cures. She listened and had sincere empathy and provided guidance and pointed out to resources for me to choose from and as much as I did like anyone else, but what would you do? And professionally, and I recognize that professionally responded and making sure that I had options to choose from, which were probably the best options she would recommend, based upon the scenario of my situation. To me, Karen’s a friend. She’s a trusted person. I shared every intimate aspect of this journey and personal things that were affecting me, that were related or not related, but had some impact with her.

I’m confident not every nurse navigator would necessarily go to that extent, but that’s what makes her unique in her interactions with patients, in my experience, with how she interacted with me, and I’m sure it’s with others. So through that course of a year of BCG treatments and emails and phone calls, one of the things that she was mentioning was second opinion. And I just felt comfortable where I was.

And when I was looking to make a decision, to make another change, I decided to take up her advice to get her and a second opinion, which led me to my choosing John Hopkins or I had other choices in the area that were convenient. Not everyone is fortunate to have an NCI facility in their community, in driving distance. Sometimes they’re in other states, but for me, I have choices and that’s where I ended up. But no, very invaluable, passionate, listens. I know I’m rambling, because I can go on and superlatives and adjectives about Karen. I’ve told her she can’t retire until I am probably on my deathbed or about to… There’s no possible way I can have a recurrence. And then, okay, fine. You can retire. So she laughed.

Rick Bangs:

Yeah. Her perspective is unique, right? She’s a survivor, husband was a survivor, works with patients. All this BCAN experience. She’s a gift. All right. So talk about your family. What role did your family play during the treatment planning and the treatment itself?

Damon Thomas:

Absolutely. I can’t say enough about how supportive my wife was emotionally, being present with me. When I chose the second urologist to work with, we had the diagnosis, she came with me. She took care of me obviously, after the procedures, my children being concerned, showing support, just being there. It was just very supportive. And I guess that sounds like that would probably be typical for my family who knows me well. They know it’s really difficult for me or challenging for me to accept aid or help. I really like to do things on my own, even here. My mother-in-law would get offended. She would want to do things for me, maybe make something for me to eat or go get something for me. I’d say, “No, that’s okay. I’ll do it myself.” But I’ve come to accept that people really want to, they do that out of love, and they just want to make sure you’re comfortable and that you feel a sense of importance in their lives.

So very, very important and very patient. I went through an emotional and I still go through an emotional rollercoaster. From the onset of diagnosis, I was depressed. I would cry. I’d be in my office, I’d lock the door and cry, and there would be triggers. And I’m thinking doom and gloom. I wrote out and I still have it, but I wrote out, “Please contact if I die.” And I had a list of names and numbers I knew, that my wife didn’t have of close friends, just so they would be with who I knew it would matter to reach out to them. So just really patient and supportive.

Rick Bangs:

So you mentioned difficult times, and as a survivor myself, it’s the nature of the beast. So how did you navigate through those times?

Damon Thomas:

Meditation’s always has been a large part of my life for years, and it ebbs and flows. I’d be lying if I say, really focused strong meditation practice and it’s every single day and I’ve never missed a day, that wouldn’t be the case. However, for me, it’s about focus and calming the mind. So I reinstated my practice. I sought out a therapist to speak to about this. In fact, I participated in a men’s bladder cancer group, therapy group for a few sessions and it wasn’t a good fit for me.

Everyone’s, what they were going through seemed more dire to me, especially early on in my journey. And it just put me in a very dark place. And I decided to not expose myself to things that would be triggers that would cause me to become more emotional or depressed. So that was the beginning of identifying triggers. So therapy, meditation and working out. That was a huge point for me. That gave me a purpose. I felt that if I was able to be physically healthy and active, that would be a play, a very strong role in my recovery. And also through this journey to be healthy and battle bladder cancer and making sure that my immune system was there. So really focus and make sure my training state intent, that I was hitting the workouts. And so that was something for me to look for.

Rick Bangs:

Okay, good. I think you hit on some really practical solutions, and I think that’s important for people to understand some of the options, how other people are dealing with it. Because we’re all going to navigate these very difficult times and we all are looking for ways to do that.

Damon Thomas:

Sure. And diet’s a huge factor as well. I sought out a nutritionist that’s not that specialized with cancer patients and met with her about, should I be changing my diet? Should I not continue supplement? So my diet has been pretty healthy for many, many years. Minimal fast food, minimal red meat, huge ice cream addiction, which is for me… You’re laughing.

Rick Bangs:

Yeah, because I share that addiction.

Damon Thomas:

I don’t think anyone can match my addiction. But just to make sure if there’s anything, I should be changing my diet then to improve my chances and ability to keep cancer at bay. And which was really helpful. It was good confirmation of, my eating habits were really good. It was in that conversation for me, chose to stop taking supplements, which I was well aware obviously, there’s no FDA approval and there’s no way to verify purity. And I know some nutritionists recommend that. So there will be listeners here that said, “Hey, I was told to take these supplements.” For me, I chose to stay away from supplements at that point. Any cancer nonprofit will say, “No smoking, physical exercise is great, no alcohol.” And one of our activities that we and my wife and I enjoy are going to the vineyards, spending time with winemakers.

And so through that year and a half, actually, I stopped drinking wine, which was not hard at all. But hey, just a smoker who is trying to quit, there are rituals to drinking wine, at least from my perspective, and is has holding a glass or opening with a cork and there would be times you missed that part, but not the actual taste or drinking. That was pretty easy, because at the end of the day, the alternative potentially, as it’s laid out is, hey, this can cause cancer, this can cause death. So yeah, I could not drink. Not a problem.

Rick Bangs:

Okay. All right, but I hope the ice cream supplements were still allowed.

Damon Thomas:

That’s a long story. And that’s another podcast and-

Rick Bangs:

Oh, okay.

Damon Thomas:

All I can say, it had been years since I had sworn off ice cream, but since then I actually have been having ice cream occasionally, which is not good. It only takes a taste or a tablespoon, and then I’ve got a quart that’s going to be gone in a sitting or a half gallon will be gone in, is sitting.

Rick Bangs:

All right. So I want to talk about cost of bladder cancer. And I want to be clear with the listeners that you and I have agreed that we can have this conversation. And people typically know bladder cancer has one of the highest costs per patient lifetime of any cancer. And if they don’t, they should realize that it’s true. So we know financial toxicity, that’s the term they use in the research side, financial toxicities. It’s one of the many side effects that people have to deal with. So talk a little bit about your experience, because you’ve got an interesting perspective as somebody in the financial services side.

Damon Thomas:

So we did discuss this a little bit prior to the podcast, and I’m still not quite sure where you’re going to go. So I’m going to stick to where my thoughts are of this. And for me, financially, fortunately, it hasn’t been an issue. We have great insurance, and in fact, my insurance has covered everything. I haven’t had any out of pocket other than my deductibles to meet for my care, which I think is a little bit unusual.

Rick Bangs:

That is unusual.

Damon Thomas:

However, most people aren’t in that scenario. So not to get political, but this is where, from my opinion, the Affordable Care Act was a good step in the right direction, or is often known as Obamacare. And being able to step in and make sure that not just affordable, but quality is there to help people. But fortunately, organizations like BCAN has partnered with another nonprofit that works or provides resources to cancer patients and their family members, they call Cancer Care.

Seeking out those resources in your communities and knowing where to go. Cancer Cares provides psychosocial support where you’re qualified. And that’s another conversation. There’s financial support, but it’s just unfortunate that not just cancer, but we’ll stick to cancer, that it’s just unfortunate that unless you have the means to be able to have the right healthcare insurance, that you may not get the quality of care. Let’s face it, if you’re looking at community, everyone’s affected by cancer regardless of your social or financial situation, it does not discriminate. However, if you live in a urban city or if you live in a city proper, that your chances of having access to quality healthcare is minimal, relative to people who live outside the city, in the suburbs. Physicians are, as I mentioned earlier, they run a business and they want to be successful and they’re looking to provide care.

So in many cities, you have higher incomes out in the suburbs versus in the city, and I’m not talking just inner inner city, however people want to take that, but just inside of a city, you’re going to have more resources, your best resources are going to be outside the city. Transportation to get there is not going to be there. And social services by city governments and federal government should make sure in place, that no matter where you live, you have access to good quality healthcare. And it shouldn’t be dependent upon where you live or your economic situation. From a financial perspective, I guess from a health perspective, there needs to be a lot of awareness for everyone about bladder cancer. I believe it’s what, the fourth or sixth most common cancer in America, but it’s the one that people don’t hear about.

And if they get diagnosed with it, they’re embarrassed, because it’s a below the belt diagnosis. If you’re a first responder or in the military, it’s a good probability that based upon your occupation from either firefighter or maybe out in the burn pits in Iraq or living on base, like Camo Lejeune, you may have been exposed to chemicals that might cause bladder cancer, which is a whole nother conversation. So that awareness and having access to quality healthcare and making sure it’s affordable, coming up with ways to have experts accessible inside, in the inner city for those underserved communities as well. So they have an opportunity to thrive and be alive and active and have a fulfilling life.

It makes a difference and it matters. And again, it’s not the political soap box portion of it, but in a society where you’re not looking to maintain the health of the citizens, but you have heavy reliance upon making sure you have the revenue from taxes, and I’m not saying you shouldn’t pay taxes, maybe the priorities aren’t really aligned properly to have the most productive economy that you could. If you’re healthy, accessible to healthcare, you’re going to be productive, you’re going to participate, you’ll be able to be a part of the economy and you still will grow. So I’ll stop there.

Rick Bangs:

Okay. Appreciate that.

Damon Thomas:

You appreciate I stopped there or-

Rick Bangs:

No, appreciate the-

Damon Thomas:

[inaudible 00:24:12] comment.

Rick Bangs:

No. This is an important discussion around disparities and travel and costs and all of the gyrations that people have to go through to get their care. Very, very important discussion. But you did mention Cancer Care, and I wanted to mention to our listeners that BCAN has a partnership with them, and the number to reach Cancer care is (833) ASK-4BCA, in other words, (833) 275-4222.

Damon Thomas:

Rick, as a person of color, as an African-American, BCAN does a fantastic job. As I was looking through cancer, bladder cancer specifically, and look to try to identify with someone who might look like me or sound like me, I didn’t see that. And so, I reached out to BCAN and expressed an interest in how I could help in being an advocate, and help bring out awareness. So for me, I thought it was important for someone else to be able to see someone of color that is going through the same thing they are. I didn’t need to see that, have that recognition, but I do know how important it is for other people to be able to feel that they can relate or have someone to connect to. And again, going back to bladder cancer, Frank Sinatra died of bladder cancer.

James Lipton of the… Actors Studio. Terry Bradshaw was diagnosed with bladder cancer as well. What’s in common? They’re all white, they’re all older. And so, being able to have someone who might look like them, not necessarily be in the same age group, just to know that, hey, this happens, that it is treatable. There’s a resource to consider. This is the experience that I had. You may not have it, but we have resources. It’s a very embracing and opening community to help you have the best health outcome possible. So we can all do a much better job in making people feel more comfortable and open and helping them know that they, regardless of their situation financially or socially, that they have access to the right sources. Cancer Care is a great option. BCAN’s a huge opportunity to help people as well. And hopefully as we go on, there’ll be other advocates out there to help bring this awareness about.

Rick Bangs:

Absolutely. And then this issue of seeing people like you is critical. We hear that that all the time. So thanks for bringing that up, because it’s an important point to remember. Damon, I want to thank you for giving us an intimate understanding of your bladder cancer journey and some very thoughtful insights on managing your medical team and advocating for yourself, getting help beyond treating the cancer. If you’d like more information on bladder cancer, please visit the BCAN website, www.bcan.org. If you’d like to contact Damon or you would 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. If you like this podcast, never miss an episode by clicking on the subscribe button on your favorite podcasting platform, and rating this podcast helps us reach more people. Please feel free to leave a review as well. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Damon.

Damon Thomas:

Thanks for having me, Rick.

Outtro:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network, or BCAN. Beacon works to increase public awareness about bladder cancer, advanced 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.