Lee Silverstein - WE Have Cancer (EP. 04)

On today’s episode of Causecasts we are so happy and honored to have Lee Silverstein, host of the WE Have Cancer Podcast, as our guest. Lee created this podcast a few years ago as a way to inspire hope and connection within the community of people affected by cancer. Lee’s positive and realistic outlook has directed the tone and reach of his work, which now has a humble yet committed and engaged following, and for Lee, there is nothing that he would rather be putting his time into. During our interview, he even shares that the years since his diagnosis have been the best of his life. After being diagnosed about 6 years ago, a fateful encounter with a friend and an emerging podcast community led to a clear realization of his path, one that he has followed with passion and dedication since.

Our conversation includes this origin story of how WE Have Cancer was born; as well as some meditation on what it means to host a podcast with guests whose life expectancy is generally uncertain. Lee sees his work sharing these stories as the ultimate way to honor and provide grace for both guests and listeners, and has experienced the profound effect of this process himself. Lee also explains why he sees podcasting as such a powerful medium for the message he is broadcasting. He acknowledges the direct line it provides to the human voice and how it is something he has come to cherish greatly. As you might expect with a conversation such as this, it is both hopeful and sad, beautiful yet tragic, and this bittersweet atmosphere is touching on many levels. For a truly heartfelt and deeply inspiring discussion be sure to tune in to hear what Lee has to say.

Key Topics:

• How Lee wound up hosting a podcast dealing with cancer. (01:25)

• Lee’s surprise at the lifespan and reach of his podcast. (03:37)

• Hope and inspiration as the main reasons for Lee’s work. (04:55)

• How Lee manages the emotional and physical toll of dealing with cancer as a topic. (06:57)

• Lee’s connection to the podcast format and the uniqueness of his product. (09:07)

• Audio and the human voice as an effective means of connection. (11:20)

• A particularly meaningful relationship Lee had with an interviewee. (12:27)

• Lee’s belief in serving and honoring those who have or will pass on. (15:29)

• Advice from Lee to anyone thinking about starting a podcast with a cause. (17:41)

• Why it is okay to get something out of a selfless service. (19:57)

Guest Info:

Lee Silverstein, Host of WE Have Cancer

Follow him on Facebook and Twitter

Thanks for Listening!

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[0:00:02.6] MP: Hi and welcome to Causecasts. I’m your host, Mathew Passy. Here at Causecasts, we have one simple mission, to highlight the amazing folks who are using podcast as a way to raise awareness for good causes. Whether that’s a non-profit they work with, a charity they support, a social justice campaign they are championing for, a medical condition they are battling or someone who is just looking to make a positive impact on their local community, state, country or the world.


These are podcasters with a positive mission. Along with raising awareness for our guests’ favorite causes, we’re also going to see if we can raise some money to support their efforts. So make sure you check out the show notes for each episode at causecasts.org to learn more about what they’re doing and how to help them achieve their goals.


[INTERVIEW]


[0:00:50.3] MP: Today on Causecasts, really excited to chat with a gentleman I have met previously down at Podfest in Florida. He has an amazing story, an amazing podcast, he is an inspiration to so many and we are delighted to be chatting with Lee Silverstein, the host of WE Have Cancer. 


Lee, thank so much for joining us here on Causecasts today.


[0:01:10.1] LS: Great to be here Mathew, thanks for having me on.


[0:01:12.4] MP: I mean, Lee, the title is pretty obvious as to why you started this podcast but real quickly, just take us through your story and what put you in front of a microphone for the first time to launch a podcast.


[0:01:25.0] LS: I’ve been dealing with stage four colon cancer for over seven years now and one of the things that people find themselves facing when they’re in a serious situation like this and I just see this consistently Mathew, is outside of the physical challenges that you run into, it definitely changes you emotionally and you have this need to do something, this need to make a difference, to give back and Chris Krimitsos, who is the founder of PodFest, he and I have been friends for about six years now. 


And he reached out to me one day and said “Hey, I started this podcast group. At the time, I worked at a college and he said, “By any chance is the college have any meeting space, we need a space.” I said, “Sure, come on out,” and I figured, all right, it would be kid of rude to unlock the door and walk away and Chris is a buddy of mine and Katie, his wife is a friend of mine and I said “Well, let me hang out and be a good host and just see what’s going on.”


This was my first meeting of the Florida Podcast Association. They’d only been doing this for about three to four months at the time. I’m halfway through this meeting, Mathew, listening to people share their stories and it was what I tell people, it was one of those lightning bolt moments.


It just hit me, I said, “Wait a minute, maybe I should do one of these things and interview people who are facing and their caregivers and find a way that people to share stories, listen to stories, get a little bit of hope,” and immediately after the meeting, I walked up to Katie who is just a few months into her, now very successful Biz Women Rock Show.


I said, Katie, I got this idea and literally, she put a hand on each shoulder and she said, “My god, do it.” Yeah. Three months later, I launched.


[0:03:18.5] MP: Wow, it sounded like in the beginning it was a little bit for yourself. Was it – were you thinking about the impact it would have on the audience from day one or did you sort of launch this thinking I need this and if other people get something out of it, great and then it sort of blossomed into something bigger than yourself?


[0:03:37.0] LS: It was kind of 50/50, certainly, it was cathartic for me and Episode One, if I’m going to be interviewing and encouraging people to share their stories, I was like well, “I might as well go first.” 


Episode one, and at the time when I launched it, it was called the Colon Cancer Podcast, it rebrand through, we have cancer just took place a couple of months ago.


So that I’ve been doing this now for over three years. But I never envisioned that it would evolve to where it is today, that three years later I’d still be in later I’d still be into this. Not that I walked into it thinking it would have an end but if you had sat me down when I started this thing back in 2015 and said that I’d be coming up on Episode 100, I would have been shocked. I didn’t realize that there would be that many stories to share and that many different stories to share.


And just the journey that this would take me on and then the side benefits and things that have come, the old Dave Jackson, because of my podcast, I can share a dozen of those stories and have all come out of this too. It’s been an incredible journey, it really has and the journey continues.


[0:04:45.4] MP: I actually do want to dive into a few of those, what have been some of the side benefits of having this podcast? Not only for yourself but what you’ve experienced with your audience and your community?


[0:04:55.6] LS: Well first and foremost, it’s sharing – the tag line that I use on the show is providing information, inspiration and hope to those touched by cancer. I know that we’ve accomplished that because of my podcast, I’ve been to several colon cancer conferences and people come up to me and say, “You’re the guy, you’re Lee, I listen to your show and thank you, you’ve given me hope, you’ve inspired me, the stories you shared have done that.”


That’s, at the end of the day, Mathew, nothing is more important than that. Because when you hear those three words, it’s off. I’ve heard those same three words ever since I was five years old. Continue to hear it to this day and you immediately go online which is the worst, the thing we always tell people when you’re diagnosed. Don’t do that, because all you do is find out all kinds of bad stuff that most of it is not true and outdated but I hope that people go online and find our show, and here, other people like them say, “I was diagnosed seven years ago.” 


We’re people hear those three words, “You have cancer,” seven years is shocking to them. Wait a minute. I have chance of being here seven years from now or 12 or 20. Yes, that’s possible for many people, not everybody unfortunately but for many.


That’s first and foremost, that is why I do what I do. Just to give people some hope and some inspiration.


[0:06:42.7] MP: How do you find the strength both, I imagine physically and emotionally to relive this experience over and over again for yourself and with others, why put yourself through it?


[0:06:57.4] LS: That’s a fantastic question and one that I’ve never been asked before. Somehow, I’m able to separate my current situation with a disease from the people I’m talking to via the podcast and from the exposure in social media. 


I will tell you that the one I have the hardest time with at times is living on social media and I’ve setup different feeds like on Facebook, where I just have a feed of my non-cancer friends and my family because sometimes I’ve just had enough. 


But I never feel that way when I’m doing the podcast. I never feel that way when I’m talking to someone because I’m, just like you and I are doing now. I’m making a connection, I’m making a friend, I’m giving somebody a voice and I feel like I’m providing a service to them to give them a voice, have their story be heard and to those who are listening.


But clearly, you hit the nail on the head, there are times, especially right now where I’m in the middle of some of my own challenges where I just don’t have the fortitude to do anything outside of the podcast and deal with me and I find that I’m spending less time in the social media cancer groups, all that. Because I need that break but I never feel that way with the podcast.


[0:08:24.4] MP: Well one, you’ll have to connect with me on social media, you can look at pictures of my 11 month old twins and they will put a smile on your face whenever you need it.


[0:08:34.4] LS: I love kids.


[0:08:35.8] MP: I can’t wait but I have to say, I’m so intrigued by the fact that you have the strength for this medium in particular and I wonder if – were you a big podcast consumer before you started to produce your own? And did you know that this medium had this sort of special ability to give you that strength to do this? Or to just sort of discovered along the way and start to realize, this is a really intimate medium and it just works for this and it works for me?


[0:09:07.6] LS: It all happened at the same time, I’m thinking back three years ago, I absolutely knew what podcasts were, I may have been following maybe one or two, maybe. It all came together at the same time, no question about it.


[0:09:24.3] MP: When it all came together, there was that aha moment where you realized this was the best way to tell your story and to tell other people’s stories?


[0:09:36.0] LS: No question. And, there’s nobody out there that I’ve been able to find that’s doing a regularly produced podcast talking to patient survivors and caregivers. Sharing the human side of cancer. The number of hospitals are putting out clinically based shows, you know, targeting the medical community and there have been a number of shows similar to what I’m doing that it seems like most of them have pod faded.


There is a group out there and they deserve a shout out because I don’t want people to get the wrong idea, there’s a group out there called Stupid Cancer, founded by a brain cancer survivor named Matthew Zachary and their target audience are people under the age of 40 who have been diagnosed with cancer. And they had a terrific podcast and recently made the decision to jump over into YouTube instead.


They’re out there and they do amazing work but they made the conscious decision to leave podcasting in favor of YouTube so it looks like I’m the last man standing.


[0:10:39.5] MP: It’s funny you mentioned that, I’m pretty sure somebody has reached out to me and suggested I chat with them. I’ll be curious to see. I think I hesitated because they have stepped away from the podcast and I might have to go back and reach out to them anyway and just sort of compare notes and see if you both have the same experience and sort of that same aha moment arriving at what this medium can do in terms of being able to tell these stories.


On the other end, what is it about this medium that you think makes it so beneficial to those who are being diagnosed? Their family members, their friends, the care staff that is working with them. What is it about podcast and that makes this an effective way to reach those people?


[0:11:20.4] LS: Hearing the voice. It’s hearing the voices because we have preconceptions in our mind of what a “cancer patient” looks like and I will tell you almost all the time, people are wrong and when I tell people that I have stage four colon cancer, they like do a double take. Because we have this vision of what that looks like and it doesn’t look like me, a guy who is in the gym every morning and works a full time job. 


When you can hear someone’s voice and someone’s voice has power behind it, and emotion behind it, and there’s laughter, like we’re talking, most of the people I talk to are like me and have colon – dealing with colon cancer and when you talk about that part of the body, it’s right for all kinds of bathroom jokes, so we do laugh on my show, believe it or not.


For people, you know, that’s not something you can get out of reading something and then a Facebook post or even from a photo on Instagram. Hearing the voice is what brings the power to what we do.


[0:12:17.5] MP: Any particular interviews that really just got you? I mean, just stopped you in your tracks?


[0:12:27.1] LS: Goodness, where do I start?


[0:12:28.2] MP: What’s the one – when I say that, what’s that first one that comes to mind?


[0:12:31.6] LS: Yeah. The first one that comes to mind is a guy named Nate who lived in Oregon. And Nate was very involved in various online support communities that I was a part of. When you said the name Nate Allen, you thought, how is – wher is this guy get his enthusiasm and this infectious, positive outlook and his tag line was always, “Not today big C, not today.”


The big C obviously standing for cancer. I said, I got to get this guy on my show and he sent me an email and it said, “I was feeling really down when I was diagnosed and I looked online for some hope, some inspiration and I found this thing called The Colon Cancer Podcast and I didn’t know what a podcast was but I clicked on it and listened to it and this is what I needed. I heard the host of the show talking about the benefits of exercise and because of Lee talking about exercise, I just sort of decided to start walking. And a little bit at first and a little further and before I knew it, walking became my hobby.” 


I will tell you that once he got into it, Nate would send me invites on FitBit to join him in the challenge, right? I stopped doing it because he kept kicking my ass, you know? There was a conference coming up in Arizona and this was in November of 2016 and one of the challenges of doing this podcast, as you know Matthew is, I only know these people through Skype or you know, whatever medium we’re using to record, I only know their voice and pictures from Facebook. Going to some of these conferences and meeting these people face to face is not only wonderful but certainly can be very emotional at times.


[0:14:34.6] MP: I’m sure, yeah.


[0:14:36.2] LS: I couldn’t wait to meet Nate and I saw him and we gave each other a big hug and I took one look at him and I said, “He’s not doing well. He’s not doing well.” I’m so glad I got to meet him because he passed away two weeks later. That’s the challenge of doing what I do, we’ve lost five that I’ve interviewed. And I’m sure, sadly, you know, those won’t be the only ones. It’s the yin and yang when you immerse yourself in something like this.


You know you’re doing good work, you know you’re touching people but you also know that you’re going to get close to people that aren’t going to be with us down the road and that’s the hard part, that’s tough.


[0:15:22.1] MP: How do you bounce back from that? I couldn’t even imagine trying to do it again the next week after hearing something like that.


[0:15:29.0] LS: I’ll tell you. Someone else I had on my show, Dr. Tom Marcilia. Tom was an oncology researcher who got diagnosed with stage four colon cancer days after having a drug for a lung cancer approved by FDA. Think about this. Tom was researching the cure for his own disease. Tom passed away early this year in January. 


And one of my former guests who is a friend of mine, she called me the night it happened hysterical crying to tell me that Tom has passed and we kind of knew it was coming and she said, “How do we do this?” And when she said, “How do we do this?” She wasn’t talking about my podcast. She was just talking about how do we continue to do the advocacy work and do all of this work and I said to her, I said, “Stacy, how can we not? What better way to honor Tom’s memory and Nate’s memory and Sherry’s memory and Sue’s memory.” Yes, I remember all these people, “What better way to honor their memory than continue to do this and continue to share these stories?” And that is the way I look at it. 


[0:16:44.3] MP: The only thing that is going through my head is just the words, “Not today.” Nate’s slogan there, you keep doing it because I am still here. Not today, I am going to keep fighting. 


[0:16:54.3] LS: Yeah and just as a follow up to that, Michelle, Nate’s wife, who I got to meet this past March for the second time but it was the first time I’d seen her since Nate had passed, she had a photo shared on Facebook of Nate’s headstone and that quote is on the headstone, “Not today big C, not today.”


[0:17:16.7] MP: Wow. So for those who are hearing this and clearly are inspired, I mean I don’t know who cannot be, what are some lessons that another podcaster who wants to use this medium for a good cause? What should they take away? What is it that you have to do differently than just your average, “Hey I know how to make money and I’ll show you how to do it,” like how do you approach it different?


[0:17:41.3] LS: I talked about this when I was given the opportunity by Chris at Podfest in 2017 to do a keynote talk and I said it’s got to be you’ve got to focus on your why and we hear that a lot as podcasters but when are talking about a cause like this, it can’t be about you. It’s got to be about getting the message out, getting the stories of who you want to share, whose story you want to share so that the world can learn and that’s the information part of my tagline. 


You know I talk about information, inspiration and hope so that you could provide those things to your audience as well. And as an aside, doing what I am doing, Mathew, in terms of the additional because of my podcast, I am playing in a whole different space than the entrepreneurs and the real estate folks and then that is nothing against any of those people. Many of them I have learned a lot from, but when you play in this space, you are in a whole different world with a whole different list of opportunities. 


Sponsors tend to be less concerned about your number of downloads because you have a niche audience and you have an opportunity to take this like I am going to in a few weeks. There is a biomedical company that I connected with at a conference that is flying me up all expenses paid to talk to their team up in Boston, in the middle of July to share my story and most importantly, talk about my podcast and they are covering the whole dime. 


So my wife and I are going to spend a nice four nights up in Boston on their dime because of this podcast and it is not about the numbers, okay? People may be shocked when they tell you this, you might be shocked when I tell you this that my average number of downloads two weeks out from a release is about 200. That’s it. 


[0:19:35.1] MP: 200, wow.


[0:19:36.6] LS: Okay? And that doesn’t change the fact that I know that we are doing good work and we are touching people. 


[0:19:42.4] MP: Absolutely. Is it okay to – I mean I think it is, but can you tell people who are doing this it is okay to enjoy it that even though you are doing something for others it is okay to get something out of it yourself? 


[0:19:57.5] LS: Absolutely. You know, I am particular about what I get out of it. So yes, for instance I have reached out to sponsors but I will only talk to a sponsor that offers something that my audience needs and would benefit from, right? 


So I am not going to reach out to a mattress company or any of these other things but the one sponsor I’ve had since I’ve started this or shortly after I started this for instance makes a drink mix for people who are in chemo or who have an ostomy bag. I mean what more perfectly aligned product that my audience would need than that and they pay me a little bit of money. It’s not a lot, it helps cover some of my expenses 


And I am also supported by one of the major colon cancer non-profits. So they provide some financial support because I am helping spread awareness about colon cancer and other cancers and getting the word out and you know they feel that it is worthwhile. So it’s okay to get some tangible benefits out of it. 


I do turn around and take a portion of whatever I get and give it back in different ways. I recently released some merchandise on my show with our logo and a portion of all those proceeds will go back to the Colon Cancer Coalition. So I want to always keep that circle going and never make it strictly just about me. 


[0:21:25.2] MP: Well like with every episode, we are going to set up a GoFundMe page for the Colon Cancer Coalition here in honor of WE Have Cancer Podcast. With your permission, we also would put up links to all of that merchandise. 


So folks who are hearing this, who are inspired and I mean you have to be, if you are hearing this, they can pick up some of that great - t-shirts and some of the merchandise. Lee, I am sure people are screaming at me that I didn’t stop and do this earlier. But I always know I was going to ask and I want to make sure it gets within and ask about you, how are you feeling? Where are you these days? I mean you look great.


[0:22:07.8] LS: I feel great, most importantly I feel great.


[0:22:11.2] MP: I’ve seen you at the conferences and you’re a ball of energy. You started by saying you work out every single day, you are working your full-time job but where are you with things right now? 


[0:22:22.4] LS: So just for some clarification. When I say that I am stage four, there is some confusion out there. The definition of stage four cancer no matter what kind of cancer you have, what that means is the cancer has spread from the original place of diagnosis, if you will, okay? Some people think that means that death is eminent. 


Well I’ve had it for seven years now and I am not going anywhere anytime soon. I did recently receive some challenging news that a couple of the spots that I am dealing with have grown a little larger. So we are recording this on a Tuesday, day after tomorrow and then I would be going in for some additional tests and figure out what are we going to do about that. I am not sure. 


So certainly there’s a little bit of anxiety about what the future holds and what I am going to be facing but first and foremost, I feel probably same way you do. I was in the gym for 30 minutes this morning, I work a full time job, I have an amazing beautiful wife that keeps me sane and we keep each other sane. That is the light of my life and two grown sons and grandkids and all of those great things. 


So I tell people with zero hesitation despite what’s been thrown at us, these last seven years the other thing that’s happened within this last seven years is I got engaged and got married and we will be celebrating our sixth anniversary in December. So when I combine everything that has happened to me Mathew, the good and the bad I would tell people and this is no BS, these had been the best seven years of my life. 


[0:24:00.7] MP: That’s just incredible.


[0:24:03.0] LS: And I mean it with all of my heart. 


[0:24:04.6] MP: No, I know and I have heard you talk about it. I’ve heard you talk about this journey being such an important part of where you are today and being in a good place and I mean it has to just come from having that positive outlook on life. I mean if I knew that there was some unknown for me tomorrow, I don’t know if I would have the poise to sit here and handle myself the way you handle yourself. You are just inspiring. 


[0:24:34.8] LS: Thank you, look I am human. I have my moments. When we got the news recently and my oncologist, who is amazing, uttered the word progression. Yeah, Linda and I had our meltdown. We know we had our meltdown, but I can honestly tell you I don’t think about it 24/7. It floats in and it floats out, here and there. Am I scared about what am I going to hear from the doctor with the results of this tests next week? 


Hell yeah I am but what I have learned the hard way, quite honestly, is going through major anxiety and torturing myself today isn’t going to change what the doctor is going to tell me 10 days from now. So why ruin today and tomorrow and the next day? Because that is not going to change what he’s going to tell me. He is going to tell me what he’s going to tell me and I’ll deal with that then but in the meantime, I could enjoy today and talk to you and sit down and spend a nice evening and a glass of an adult beverage with my wife and have a good time and that’s not going to change the outcome either. 


So it is a choice. It is a choice, no doubt about it. I would never tell someone and I am very hesitant about this okay, “Oh you just need to have a good attitude and that will cure you.” That’s BS too. I know too many people who are gentlemen and the people I have mentioned to you who are no longer with us that had attitudes as good or if not better than mine. 


If that was all it took, we wouldn’t be having this conversation but my choice to have this attitude is what helps me cope. It’s what helps me get through the day, okay? How I deal today is 100% in my hands and I can chose to have a great day today or I can chose to sit and worry and lose sleep and cry and be anxious. Either one of those isn’t going to change what the doctor is going to tell me in 10 days.


[0:26:39.0] MP: I hate to make it sound as trite as this but on the days that you do the podcast are those naturally a good day? Are those days you look forward to? 


[0:26:48.9] LS: Absolutely, yeah. 


[0:26:51.2] MP: I couldn’t even get the words out, he said absolutely so quickly. I can’t say it again, I mean it is inspiring to talk to you again Lee. I know we’ve met just for a few minutes. You are a popular guy at Podfest because the way Chris sings your phrases and puts you out there and everybody wants to shake your hand and meet you and I am so glad we had this opportunity to chat and I look forward to doing some following up with you as this project progresses and


[0:27:22.6] LS: Please do. 


[0:27:23.2] MP: I think what you have done, what you do there is a lot that people could learn from if they want to be doing podcasting in a realm of helping others, of benefiting great causes. Social causes, medical causes, financial causes, whatever that might be and I think you really are an inspiration. So we do want to make sure that everybody goes and checks out WE Have Cancer show. You can find it at wehavecancershow.libson.com. 


We will obviously have a link to that in the show notes. We’ll also make sure to put a link to where you can find some of Lee’s merchandise that is for sale with proceeds benefiting the Colon Cancer Coalition and specifically, we will have a link so that you can give directly to the Colon Cancer Coalition. Everything raised will go right to them. We want to make sure that we are giving this cause, this charity and this spectacular gentleman as much support as we can and Lee again, it’s an honor and it was a privilege to have you here on Causecasts.


[0:28:15.6] LS: Mathew, thank you so much for having me and if I can help any podcaster out there that needs a little help, just need or wants to bounce an idea by all means you can reach out to me at lee@wehavecancershow.com. I am happy to help. 


[0:28:30.4] MP: Such a nice guy, could you be any nicer? It is painful. 


[0:28:35.0] LS: I need my wife in here, she can roll her eyes. 


[0:28:38.3] MP: Lee, thank you so much again.


[0:28:41.6] LS: Mathew, thank you. 


[END OF INTERVIEW]


[0:28:43.6] MP: Thank you so much for listening to this episode of Causecasts. Again, if you’ve been inspired by the work of our guest, please check out the show notes in your podcast app or head to causecasts.org. There you will find links to the work of our guest and a special donation link set up to support their favorite cause. All the proceeds are going directly to that cause minus any administration fee on the platform that they set up. None of the money is coming here to the Causecasts production. 


Also while you’re at causecasts.org, make sure you follow and subscribe to the show on Apple Podcasts, Google Podcasts or wherever you enjoy your podcast show and follow us on social media as we’ll try to provide updates on what is going on with our guests and some other folks who we’ll be featuring on the show and any other efforts that we have to support the community of Causecasters that are out there. 


Now there is also going to be a special Facebook group dedicated to Causecasters. So if you already have a podcast for a cause or you’re thinking about launching one, join the group. It will be dedicated to providing resources and answering questions specifically for Causecasters. Hopefully we can do things like arrange some special non-profit pricing of various podcast services to help you with your venture and keep you under budget because we know a lot of people doing Causecasts are not going to be reaping in the money. So we want to see what we can do to help you produce a high quality product, get your story out there, get people inspired and not break the bank. 


Lastly, if you are a Causecaster and you want to join me here on the show for an interview, please head to Causecasts.org and fill out the interview request form. We’ll take a quick look at it and if approved, we’ll schedule you for chat and show the amazing work that you are doing with Causecasts, raise some awareness for what you’re doing and ideally, raise some money as well. 


Thank you so much again for staying with me and we will see you next time on Causecasts.


[END]