Standing on the Shoulders of Giants: The Story of Mark McIntosh and living with Amyloidosis

We started this show because of the intense BURN I have for carrying on my mother's story...

My mother died 11-days before my 8th birthday battling a rare disease called Amyloidosis... today we sit down with Mark McIntosh a survivor of Amyloidosis. This conversation is deeply emotional for me but also incredibly hope inspiring for those battling something that seemingly doesn't matter...

Mark's perspective and energy towards LIVING will absolutely light you up and inspire you to look at your current circumstances in a different light.

I can't than you enough for taking the time to share your story with us today and your advocacy for helping bring awareness to the disease.

Connect with Mark at https://www.seekvictory.com/

Full episode live on Youtube and all podcast platforms
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Transcript

Speaker 1: 0:00

It's all because of brave soldiers like your mother that they studied her and others. And here I stand today, one lucky you know what? That those that have gone before us paved the way for people like me to stay alive.

Speaker 2: 0:27

Welcome back to another episode of the Burn. I am Ben Newman and you know how we do this. Every single week we're going to bring you a story of an athlete, an entertainer, a celebrity, somebody from the business world, a coach, somebody who has realized that why and purpose is not enough. There's this underlying burn that ignites your why and purpose and causes you to be disciplined on the days that you don't want to do it, and especially after you win. Today's guest and let me tell you this may be, in five seasons of the Burn, the most impactful story we have ever shared. This may be one of the most mind-blowing conversations you have ever heard me have, because of the uniqueness of what you're about to experience in the conversation that Mark Mack and Tash and I are going to have. Now, before I welcome Mark, I want to share a few things about Mark which I think are very, very unique and they are awesome. Mark and I got connected from a mutual friend named Tim Burch. Now Tim runs an organization here in St Louis where they actually raise money. It's called the Buddy Fund. They raise money to go to impoverished communities where individuals don't have money for sports equipment, so they can have sports equipment it could be balls and bats and uniforms and I've supported that charity for years and so about two months ago I get an email from Tim that says you have got to meet my friend, mark McIntosh. Mark has spent his life now, former athlete at the University of Missouri baseball and football, spent his entire life not only being a lover of sports but moving to Colorado where he has been a broadcaster, he's been a reporter, he's done everything under the sun when it comes to sports. He's probably got more memorabilia than I do from all his years and even to this day he still is writing every single week a special column for Sports Illustrated, covering the Colorado Buffalo. So we may sneak in a little Deion prime time conversation today, but Mark is doing some amazing things, always has. But the part of the email that struck me at its highest level, which is going to bring the uniqueness to our conversation today, that's going to captivate. You had nothing to do with sports that Mark and I love it was the bottom of the email from Tim Birch where he mentioned that Mark has amyloidosis.

Speaker 2: 3:14

And for those of you that have been part of my story and my journey and this work that I've done for the last 18 years, from the first talk that I gave in 2006, I've always shared my mother's story of her battle with amyloidosis, the disease that in 1986 took my mother's life. And I always say my mother never, ever lost a fight. On November 2, 1986, she took the pen that she was writing with in her amazing journal where she wrote beat the statistics, beat the odds, live with the disease. That is chronic and fatal, believe in yourself, combat anything, purpose in life. And she passed that pen onto myself to continue to write her story. And the empowerment and the sharing of her story is what brings Mark McIntosh and I together with you.

Speaker 2: 4:15

Mark McIntosh, now my friend, who I'm gonna help you bring awareness to the amazing things you're doing, because you're a fighter, just like my mom, and we're gonna talk about those things. My friend, you moved me the first day that we met over Zoom. I wish we could do this in person. It's like we're gonna have to do it in person, probably when the Kansas State Wildcats play the buffaloes. We'll do this again in person. But, mark McIntosh, welcome to the burn.

Speaker 1: 4:41

Wow, Ben, thank you so much. Equally touching for me was to hear you talk about your mom's journey, and not a whole lot of people come down with this. The stats are pretty like for every million people, nine of us have this rare bone marrow disorder and I was diagnosed in April and I was like what Never heard of it, and you pronounce it a lot better than I do. I'm still struggling to pronounce it, but it has obviously been a life changing experience. But, as we discussed when we first met, I don't know if I've ever felt more alive than I feel right now, despite the fact there's something inside of me amyloidosis that's trying to kill me, but we've got it under control and it has just made me so passionate about one raising awareness for earlier detection of amyloidosis, because it's very difficult to detect and by the time most people find out they got it, it's too late.

Speaker 1: 5:50

Like it has destroyed my kidneys, but then that has led me to I need a kidney transplant and I'm not alone. And so we're really just trying to raise awareness around the country, around the world global dominance, as Tim Merch likes to say to raise awareness that people can share a kidney. People can live just fine. With just one kidney, you can share a lobe of your liver, you can share your bone marrow. Those three things live organ donation. We can change a lot of lives, save a lot of lives, and I just appreciate opportunity to talk more about it.

Speaker 2: 6:31

You know, one of the things that I just admire about individuals like you is you say that you're feeling more alive when the reality is, just like with my mom, that amyloidosis is eating away at your organs. It's essentially, you know, taking a hold of one of your kidneys to where now you're gonna be getting on the donor list to receive a new kidney. Yet you've got this passionate, this liveliness. What is it? When you started going through this process and I just wanna paint a picture you shared this with me that you know you were 185 pounds. You know former division one athlete and now you weigh about 145 pounds.

Speaker 2: 7:11

And so I just you know there's so many people, you know Mark, and they're complaining about the littlest things in life, and when I think of my mother's story and when I hear you share words in your perspective, I just want everybody to lean into this conversation with us, because I hope it provides perspective for you. And Mark is fighting and Mark is going to win, and we're gonna share some things about this disease that are different than when my mom had it, which gives both of us certainty he will win. But I want all of you to realize that, whether you're going through something big or small. We wanna provide perspective for you today that you can win too. So, mark, what is it for you that's enabled you to be positive, knowing that you've certainly seen weight come off your body, but also uncertain as to what's going on inside of your body?

Speaker 1: 8:05

Well, I think I was born just optimistic by nature and then growing up I was surrounded by family and coaches and stuff that just always encouraged me to persevere the life lessons we learned from sports. You know that very well. I look back over I'm 65 now and I was 17 when I suffered injuries head injuries, upper body injuries that ended my competitive athletic career. Then I've been through two painful divorces, have a child from each marriage, fought hard to keep both of those together, but if the other person doesn't want to be married to you, not much you can do about it. I'm married for the third time to an absolutely incredible woman. I'm a good two strike hitter, like this guy.

Speaker 1: 8:52

I've been through the layoffs and the television business. You know the television business local television news Not as many people watch and so the staffs are smaller. So that job was eliminated. And then come down with this rare bone marrow disorder that's destroyed my kidneys. Those are four major things in my life.

Speaker 1: 9:12

I didn't ask for any of this, but I think we have to make a decision when we have stuff happen in our life that we sit around going. What the hell is going on around here? Are we going to be a student of the experience or a victim of the circumstances. I've been very blessed from a very young age and I was a quarterback, I was a point guard. You're kind of taught to adjust right.

Speaker 1: 9:38

And so this is just the latest and probably the greatest, because this is trying to kill me, you know, and I'm just very passionate about earlier detection of amyloidosis and you mentioned your mom and things have come a long ways in the last five or so years. That, for people like me, give me hope, whereas your mom you know what 1986, back then it was kind of a death knell. But I just kind of feel that I'm you know, to steal a journalism word is I'm on assignment to raise awareness to earlier detection of amyloidosis and encouraging people to consider live organ donation. We can share our spare, save a life and leave a priceless legacy.

Speaker 2: 10:34

You know, mark, there was something that you shared with me the first time that we were together and I think this is the part of the story. If people aren't blown away yet the synergy and the amazingness, especially when you hear Mark say that of a million people, there's nine that have amyloidosis. When my mother was diagnosed in 1983, passes in 1986, there were 2000 people that had the disease I mean we're talking about. This is the rarest of the rare. Most people have never even heard of it.

Speaker 2: 11:06

To the point where in 18 years of doing this, always sharing my story, there have been less than 10 people that I have met, shared videos, where people say, oh, I, I have amyloidosis, or I know a friend Mark is only the second person that I've connected with live that actually has the disease. In 18 years of sharing my mother's story, and there's been about one handful of people who have said, oh, I have a relative that had or has or passed from amyloidosis. And Mark and I, on this first zoom that we had, he says to me I'm just fortunate that chemotherapy is keeping me alive. And, Mark, you know it because I got teary eyed the first time we talked and I'm going to do my very best to keep my emotions in check here.

Speaker 1: 11:55

And flow buddy.

Speaker 2: 12:00

Mark says that to me. I'm fortunate that chemotherapy is keeping me alive. I now want to take everybody back to 2008. I had been speaking for two years. First time I was ever paid to speak.

Speaker 2: 12:16

2006, started getting some recognition for things. Always sharing my mother's story became a catalyst and a big supporter of the Boston Medical Center where my mother received her treatment. I was invited in 2008 to go and speak to the 200 leaders of the Boston Medical Center. So if you can imagine the emotion of this experience to go back to where your mother received care and in her journal, where I referenced some of her powerful words earlier, she would talk about her nurses. She would talk about her doctors. She talked specifically about Dr Martha Skinner, one of the two foremost leading experts in the world.

Speaker 2: 12:57

Back then and still now, and in 2008, I'm invited and I walk into this old rickety conference room with these old rickety chairs and the assistant to Dr Skinner sits, my wife, amy and I down in these old rickety chairs that my mother sat in all those years ago. Same table, same chairs. A handful of minutes after waiting, dr Skinner walks into the room. She had a file that was this thick. She opens up that file, she starts passing back and forth letters from my grandparents to her after my mother had passed, how much her care and her team meant to our family, things that I had never seen. She expresses things about my mother, my mother's energy, my mother's passion, the way that my mother was the fighter that she was like. You hear this fight in Mark, this extraordinary fight that came out of her while she was dying. And Dr Skinner, after a handful of minutes of sharing this information, looks me dead square in the eyes, just the way she looked my mother dead square in the eyes.

Speaker 2: 14:05

For those of you that have heard me tell the story, at that same table, dr Skinner told me when she told my mother on her first visit to Boston you're only the second woman under 40 years old I've ever seen or heard of having this disease and you have two to four years to live. I'm sitting at the exact same table in 2008 that my mother sat at in 1983. And Dr Skinner now looks in my big brown eyes like she looked in my mother's big brown eyes, because I got my mind from my mom. I got to say that so that I can charge my emotion down a little bit here and get you all to smile a little bit, because I bet you can't believe what you're listening to today. And Dr Skinner looked at me and she said, ben, now what I have to tell you is very, very hard for me. Your mother died 10 years too soon. Your mother was one of the cases of amyloidosis that we studied. That enabled us to understand and to find that chemotherapy will enable people to live with amyloidosis.

Speaker 1: 15:13

Oh, bless your heart, buddy. You got your mom's spirit.

Speaker 2: 15:17

Mark, when I, when I shared that with you and I'll never forget it you, you said to me you said I'm just blessed that I've been able to stand on the shoulders of giants like your mother, to be able to live.

Speaker 1: 15:38

And that well, god bless you, buddy. And I just believe that you know and that they discovered about five or six years ago that a monoclonal it's not even actually chemotherapy but it's like the chemotherapy on steroids type stuff. But there's a drug called Daratumamab that they've been using to great effectiveness in helping people with multiple myeloma and amyloidosis is. You know, it's a bone marrow blood kind of disorder. It's not a cancer but it's a heck of a lot like it. And so some visionaries said, hey, it's working on multiple myeloma, why don't we try it on amyloidosis? Almost everybody today, the standard care once you're diagnosed with amyloidosis is Daratumamab and it's done a wonderful job for me.

Speaker 1: 16:42

You know, after seven months of weekly chemo and this cocktail of chemo and Daratumamab and everything, I'm in total remission and to the point when I first started treatment for amyloidosis that required dialysis because it was attacking my kidneys, they were saying, oh well, maybe in five years you could get a kidney transplant.

Speaker 1: 17:13

And then I started the treatments and I responded very well to the treatments and we drove down that amyloid and then they went well, maybe in three years.

Speaker 1: 17:24

And then I continued to do well and they said, well, maybe 18 months to two years you could get a kidney transplant. But I just got back from the Mayo Clinic, my wife and I went up there and we talked to a guy who's considered the godfather of amyloidosis research, dr Maury Gertz. He's been studying this stuff for 40 years and he gave us a strong endorsement that you know what we believe that that amyloid is under control and if you find a kidney, I would endorse putting it in you, which is exactly what my caregivers here at UC Antshoots, university of Colorado, antshoots Medical Campus last time we met with the transplant surgeon he said if I find a kidney I'll put it in you. So we've gone from five years to maybe six months, and it's all because of brave soldiers like your mother that you know. They studied her and others, and here I stand today, one lucky. You know what, that those that have gone before us have paved the way for people like me to stay alive.

Speaker 2: 18:33

You know, mark, it's just amazing here in your words, even just looking across the screen and having this conversation with you and you know the fight that you know you're going to win and you're already winning has led you to do some things that you touched on earlier that I want to spend some time on now, and I think that's a great thing to do. You know what's interesting about this disease. You've covered so many amazing stories and now people are starting to cover your amazing story. We're going to put in the notes for today's show a link to Denver TV, one of the stations that did a story about Mark and some of his fight and the things he's doing. You'll be able to see that story and some other clippings that have stories that have been written.

Speaker 2: 19:25

But one of the things that I think is amazing that you've now done and you're seeking to be to receive a kidney, so you will be on this donor list is you are creating this army of 5000. Can you tell us a little bit about this new fight that you've created, knowing that you're winning this fight against amyloidosis, for the creation of this army of 5000? You, betcha, After the initial diagnosis, we're going to be talking about the first one.

Speaker 1: 19:51

After the initial diagnosis, we were hopeful that my kidneys would wake up through all the treatments, dialysis and the chemo and everything else. But then it just didn't happen. So we started saying, okay, so we shift, much like in football, if you're running off left tackle and it's not working, let's try the other side. And so we realized, okay, now it's time for transplant, needed transplant, and I've been going to a Friday morning men's Bible study for 20 years. It's like a locker room. We bust each other's chops and I came in and said, well, kidneys aren't going to wake up, I need a kidney. And one of my buddies sitting there goes Macintosh. Given your communication skills and your social media platforms, get over yourself, go find 5000. Okay, so you know, I just threw it out the universe to all my friends, and not only back in the Midwest, st Louis, kansas City, but obviously here in Denver, where I've been a media personality for 35 years and we are building a team that we are. Our whole mission is to raise awareness of the relative ease and benefits of considering live organ donation and people. You can live with one kidney. You can give a little lobe of your liver that can regenerate in somebody else's body, you can donate your bone marrow, and so we've created this campaign drive for five. We're looking for 5000 live organ donors to share their spare, save a life and leave a priceless legacy.

Speaker 1: 21:43

And it was really built upon, and I write about this every week on LinkedIn. It's called Fridays with Mac, and about a month ago, I did a story on an Olympian, chrissy Purham. She won two golds in a silver the 92 Barcelona games in the butterfly. Missy Franklin, who was the darling of the 2012 Olympic games in London. Her father, dick Franklin, needed a kidney, and so the USA swimming Word was getting out. And Chrissy, she's 53, she's still in great shape, she's past child rearing years and she was looking for a way to give back with significance. And she goes I'm gonna give Dick Franklin my kidney. And she did and she's fine and she's doing great and Dick's doing great. And I ask her two golds in the silver, barcelona, giving Dick Franklin a kidney. Which one is more significant, scott? Without question, giving Dick my kidney far better than gold and silver.

Speaker 3: 22:51

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Speaker 1: 23:34

And so we're just trying to encourage people. Hey, if you're 45 to 60 years old, you've kept yourself in good shape, you're past your child, wearing years and you're looking around going. How can I kick off the fourth quarter of life with significance about? Share your spare, save a life, leave a priceless legacy. It's better than gold and silver.

Speaker 2: 24:00

Mark your energy, your perspective. It's just that. That's why I said after we spoke, I said you've got to come on the burn and you've got to share your story. It just, it puts a smile on my face. It brings me energy and healing to a place in my heart that has felt so much sorrow and pain. But it's stories like yours, or individuals that my mother taught, and I hear those stories of the fight that my mother instilled in me that keep me going and I know just your message and your positivity to lead this charge is gonna get you that 5,000 and beyond.

Speaker 2: 24:36

The impact is going to leave a significant legacy at mark on this world.

Speaker 1: 24:41

Well, it's been amazing. So we're going after former Olympians, right? One of our team members, randy Weber, who was a ski jumper, competed at Lillie Hammer and Nagano for the US. He's a Colorado based guy and we were talking the other day about we're going after big groups, athletic departments, former athletes, fraternities and sororities, corporations, you name it and I was talking about how we're gonna go after fraternities and sororities and he goes oh, former Olympic athletes, we're the biggest fraternity in the world and we're co-ed. And he started, you know, the Olympic Village for two weeks once the athletes all arrived.

Speaker 1: 25:33

It's a melting pot of athletic fit and, yeah, people that know a little bit about sacrifice, hard work, teamwork and all that kind of jazz and you know. So it's just amazing how so many organizations and individuals and groups are getting on this. And look at our world today. We got a lot of challenges and everybody's trying to figure out how can we come together in a significant way. How about, whether you're black, white, brown, live in a mission, live in a mansion, live on Main Street? How about share your spare, save lives, leave a priceless legacy?

Speaker 2: 26:18

It's amazing, it's your mom's shoulders.

Speaker 1: 26:21

I, you know I've won. What's your mom's first name? Janet. I'm going to start bringing up Janet often. That's all right with you.

Speaker 2: 26:32

Absolutely, and anything I can do. We're in this fight together and I'll share the story and we'll do it together and we'll have impact together. Maybe we'll have to schedule something around my visit to Boulder next year. So the Kansas State Wildcats are coming to Boulder, so we may have to schedule something around the Big 12. Welcome to the Colorado Buffalos.

Speaker 1: 26:55

Yeah, so I came to Denver in 88 as a sportscaster and one of my main responsibilities was covering the CU Buffs. So I hosted the Bill McCartney show, rick New Isle show, gary Barnett show blew on the team playing was basically embedded inside that football program and we're going after former CU athletes in that 45 to 60. But I've made many a trip to the Little Apple, I know that you have it.

Speaker 2: 27:27

Hey, I'm going to have to make sure that you, so we're going to do it twice, because you are winning this fight. You're winning it big, and so my prediction is next year you're going to be winning big, we're going to have a big hug, we're going to be on probably different sidelines, wearing different colors, but that's okay and then that next year, if it doesn't happen by this year, you're going to have a new kidney and you're going to come to Manhattan, kansas, and you're going to watch us battle the Buffaloes. That's, that's my prediction.

Speaker 1: 27:55

I would welcome a chance to hang out with you. Maybe we'll go to Aggieville before on Friday night and and I tell you, bill Snyder, what he did and now has been continued with Coach Climon.

Speaker 2: 28:14

Yeah, absolute continuation.

Speaker 1: 28:16

Absolutely amazing, you know, because back around 1988 or a little before that Kansas State was considered one of the worst college football programs in the country. And then along comes Bill Snyder, and then they've done a wonderful job of your buddy and everybody else. What, what has happened in Manhattan, kansas? You talk about giving hope where sometimes people had no hope, you know, and what that program has become is just amazing.

Speaker 2: 28:52

Well, I appreciate that and it's a wonderful community. A great group of kids and coach Snyder built a great foundation and I'll tell you, Coach Climon has come in and raised the bar and continued it with his belief in culture and and young men. And I know there's a new coach in town. Maybe we'll finish this way to have some fun. There's a new coach in town in Colorado and people have ups, downs and all around with how they feel about Dion Sanders. But I'll tell you what I remember watching a 60 minute episodes, about a 13 minute episode, and I've mentioned it here on the burn. I've mentioned it in our uncommon live coaching community One of the best interviews I've watched for people to understand whether you think you understand him and I don't like him because he, you know it's too much jewelry and flash and there's too many celebrities on the side and it's too much.

Speaker 2: 29:40

Go watch this video because one of the things and I want to turn it over to you for your experience with him thus far he tells these kids the truth. Yep and Mark, we live in a world today, like on today's podcast. Yes, this is tough to hear, but the truth is, if you believe and have a willingness to fight. Not only is Mark McIntosh going to beat Amalaya Doses, he's going to go get other donors to help others beat Amalaya Doses. It takes this army in order to win, and Dion Sanders it's the same. Sometimes it's hard to hear things, but we need to give kids the truth for them to understand their future. How much truth is there to that statement that Dion Sanders is bringing the truth and a reason to believe and a revitalization of the Colorado Buffalo's program? Because, as I mentioned, you guys can go check it out. It's pretty cool that every week in Sports Illustrated, Mark is still writing and covering Dion and the Buffalo's.

Speaker 1: 30:34

Yeah. So if you just like, if you Google Sports Illustrated Mark McIntosh, all my articles will pop up. But the first one I wrote back in August was comparing Coach Prime to Bill McCartney. They both can recruit, they both are strong men of faith. And here was the third thing.

Speaker 1: 30:57

I didn't know about Coach Prime because you pointed out, you know, I knew him as an athlete, as a sportscaster, covering great athlete, real flashy. But he is just as passionate about mentoring young men as McCartney was. And that's the side of Coach Prime. I did not know. And you know, I finally got a chance to talk to him the other night when he was given the Sports Illustrated Sportsperson of the Year Award and I purposely wore my 2001 Big 12 Championship ring. That's the last championship Colorado won and I was the host of the Gary Barnett show then and he felt I did something to contribute. But I, you know, I introduced myself to Coach Prime and said you know I hosted McCartney, new High's own Barnett show and this is my 2001 Big 12 Championship ring. What do you need to do to bring this program back to win a championship? So that got me an extra question, despite the fact that PR people were One question move on, move on.

Speaker 2: 32:09

Hey, knowing, knowing Prime, he would love to get another piece of jewelry. The only problem with that is these kids to stay. Wildcats are going to try to stay. In our way that happens. So it's going to be fun to to welcome you back to the Big 12. It's going to be fun to welcome Prime into the Big 12. And, Mark, I just I look forward to the awareness we can continue to bring. Just as a reminder, We'll put a couple of links to some of the articles that Mark has written about Prime. We're going to put that TV interview about the army of 5,000 and just help bring more awareness for you to maybe be one of those individuals who decides to give that spare in order to leave an incredible legacy. Mark McIntosh, your fight and your perspective is just fuel for all of our souls and I appreciate you, my friend, and look forward to growing our friendship.

Speaker 1: 33:07

Well, and, and you know, I continue to meet incredible people like yourself and then I hear stories about like your mother and it just gives me even more incentive that you know I'm on assignment here to raise awareness to amyloidosis and earlier detection. And then you know, live organ donation. We all have something in abundance that can save somebody's life and we're just encouraging people. Share your spare, save a life and leave a priceless legacy.

Speaker 2: 33:44

Mark, thank you so much for coming on the burn and I have to give another special shout out to Tim Merchant just the amazing introduction that he made just a couple of months ago to bring us together, to bring our stories together, for the opportunity to share the story on the burn. To each and every single one of you watching, once again, a final reminder I'm going to put all the ways that you can stay connected to learn more about Mark, to learn more about amyloidosis, to learn more about this fight that continues all these years, 37 years after my mother lost her life to amyloidosis. Yet she won the fight of life because of what she instilled in me, and Mark now carries that fight on, and I want you to please share with somebody that's important to you in your life. I don't ask this much and I don't.

Speaker 2: 34:35

You know, the cost of the burn is free, but what I ask is that you share this episode with somebody who feels like they're in a fight, whether it's a small fight or whether it's a big fight. Somebody that needs hope, somebody that needs a shift in perspective, somebody that needs to understand the power of the burn that lies inside of them so that they can ignite their why and purpose and continue to fight even though they don't think it's possible for them. This has been the burn. Mark McIntosh, I appreciate you. And to our loyal followers, one of our final episodes here of the year a happy, healthy and blessed holiday season to each and every single one of you. God bless you and we continue to fight together.

Speaker 1: 35:18

Right on buddy. Thank you so much.