Audacious & Without Apology with Podcaster and Cancer Rebel Matthew Zachary #201

Aaron: Friends. Welcome back to another episode of work, life, play, where we want it all, the joy, the integration, the wholeness, the light and easy, the work that is meaningful to us. Connection to the people that we love and courage to keep going. My guest today is Matthew Zachary, and he plays this really cool audacious role on the planet in the fight against cancer. Personally, this topic has become super meaningful to me.

These last couple of years, I've been spending time in my client work supporting a major pharmaceutical organization as they look at re-imagining, re-engineering their approach to actually curing cancer. How do we eradicate cancer from the planet and extending the lives of patients, improving the quality of life for patients? And for me today, I'm going to dedicate this episode to two of my friends that are battling with this gnarly disease that I'm sure many of, you know, and have family and friends that are battling this disease as well.

So I dedicate this to Peb and to Bill my friends, as he listened today to Matthew's journey, he himself, a brain cancer survivor 25 years ago, he founded an organization called stupid cancer, which I find is funny and helpful. Newsweek calls him a cancer rebel. Deepak Chopra says he's a peace healer. Now he has his podcast of his own. It's called out of patience and sorting through the BS and healthcare through just raw conversations about patient advocacy. What you'll find is Matthew is a rebel at heart apologetically. So I know you'll enjoy this conversation. And for our friends listening today that are battling with struggling with cancer, have a friend or a family member struggling with cancer. And I know many of you do, our prayers are with you. You can do this. It's good for us. Let's keep going, Matt Zachary. So you're giving the swollen middle finger to cancer. Tell us about this.

Matthew: My dad would always say that they broke the mold when I was born and my wife would say the world needs no more than just one of me. So I'm going to why I've been leaning in and owning that my entire life one's enough for you.

Aaron: One is plenty enough for that.

Matthew: I know. I was raised in Brooklyn. I was raised by teachers. I was well-educated in the New York city public school system. So plug for public schools right there. I went to a state university, so plug for a state university education, and I was very privileged and I, I lived a wonderful life growing up and I always had this just inherent disdain for authority didn't work well in class when you were in third grade, but it came in handy at least, you know, when, when they say life interrupted, you know, I, I knew what I wanted.

I was very good at what I had hoped to accomplish. My mom threw a piano at me when I was young. I took that right away and that kind of became, you know, I think they say insecurities would drive success for all the wrong reasons. My own insecurities drove my desire for attention and to prove myself and the piano was my conduit to adolescents and young adulthood. And that was kind of where you know, man plans and God laughs. And I went to college and I was going to go to grad school and be a film composer and the next John Williams and all that. And then bam, you know, brain cancer out of nowhere, six months to live, everything changed. Then you get a little grounded. It kind of matures you a little bit when you're supposed to be 21 and doing all the stupid things.

And I think, you know, everyone has a life moment, hopefully that that gives them perspective on the universe and all the Douglas Adams questions we cannot possibly any answers to. But I, I just never felt like I was going to come to the, to the complacencies of you poor thing. Or my grandma died from cancer. My dog died from cancer. None of these knee jerk platitudes resonated with me. And it just kept me very angry that I wasn't treated well. And I don't mean treated well. Like, you know, this was the nineties. Nothing was really treated well in cancer healthcare. There was, there was there's the barren zone of nothingness. So I kind of carried that forward. And I think having just my inherent pension for disdain or a cockeyed pessimism or a cockeyed optimism, put me in a position to, to, to maintain this general. Like I'm not happy with the status quo. Things need to be different. And I am going to be my own advocate.

Aaron: I'm curious, about the, I have down teachers and pianos. So for you, like in the beginning, this inconvenient part about you became, sounds like an undergirded then super powers, strength that has you're a 25 year brain cancer survivor. How did you at was you said age 20 to 21. What was your diagnosis date?

Matthew: 21. Not that this is a good time for that to happen, but still, yeah.

Aaron: Right. But like at that age then did you begin to recognize some of that unreadiness in, you was actually serving you?

Matthew: My attitude people as well, what was it like to be diagnosed with cancer at 21? I only know what it's like to be diagnosed with cancer at 21. I had no idea. I just remember really thinking that how dare this get in my way, it might confound people to think that that was what literally went through my brain, besides the tumor that how dare this, get them over. I have a life to live, get out of here.

That was kind of the way that I really approached it. And I'm kind of glad they didn't give me the stats. You know, I, I had an 80% chance of dying in surgery because the tumor was in my spine, like by my cerebellum. So they got to go back to the neck and cut through all the good stuff. Like, I'm glad they didn't tell me that. But when they said, Oh, well, let's hope you're alive in six months to figure out what to do with you next. It didn't really resonate with me. Like I got to get back to school. I couldn't. But that, that just that Moxie, that I had. And I, I'm not saying everyone just have this, just be your own advocate. That's not how life works. I had a predisposition, but I had support in the form of my family and friends. I think what really transformed my, I would say pragmatic hostility toward the status quo was realizing years later, I could have had it a little better by being made aware of other support resources that I should have been told about and were not. And that forms the fundamental basis of what I stand for today, which is access and dignity when shit happens.

Aaron: Okay, cool. Yeah. I like that. I'm looking at your website too. And it talked about on your podcasts about conversations, about advocacy heroism in the audacity of health. So say more about that. Say like 25 years later, I'm at age 21. So now in your mid-forties, why does this still drive you?

Matthew: Because of one particular story that is still relevant from 25 years ago. And this is really important. It's the one through thread in why I still do what I do. And it comes down to the fact that I was never treated like a person. I was treated like a piece of biology by the system. And that's fine. I guess if you're okay with that. I wasn't, I didn't realize I wasn't until 10 years later, but it all comes down to, I had radiation. I had surgery and one might presume, Oh, chemotherapy too. Right? Well, I didn't have chemotherapy, which oohs and aahs from the crowd, how did you not have chemotherapy? Right. So turns out that the chemotherapy they wanted to give me was made up of multiple chemotherapies. It was like a martini shaker, cocktail of chemicals. And one of those ingredients would have given me permanent nerve damage in my fingers and toes.

Now, how did I know not to have chemotherapy? They cost, I didn't want a drug in me that would render my ability to play piano forever gone. Well, I didn't. And that's the thing they wanted to give me this drug, all this cocktails without telling me that it would have crippled my ability ever play piano again. So the question then is how did you know not to do that? And it just comes down to, I happened to have an uncle who's a geneticist and has been a geneticist for 60 years back when it was before it was trendy to be a geneticist. And he knew enough to ask the doctors in New York, I want to see what you're going to give my godson. And back then getting data that wasn't, your family was like pulling teeth. He got the data, he read the reports, he looked at the protocols and he said to me, you don't want chemotherapy.

If this is the best that they can give you.

And I said, why? And he said, well, it's going to cripple your ability to ever play piano again. And whether you live or die, the only thing that matters to you right now is your ability to re regroup, recoup, and rehabilitate your ability to play. I said, all right, no chemo fine. So turns out I could have never had a life after cancer as a pianist. If I had the chance to rehabilitate went back to the doctors, and this is why it matters the most right now went back to the doctors and said, I do not want chemotherapy because I don't care if this cures me. If there were the rest of my life, it wouldn't. But if I don't care, if it had, I'd rather die in six months with the chance to rehabilitate my fingers and play again, then dying 70 years and never have music in my life. And they looked at me, actually, they looked at my parents because they're pediatric doctors, but they looked at us and they said, but we're trying to save your life. And that was it.

Aaron: Yeah.

Matthew: That moment is enshrined in history as dignity and individuality and humanity. When shit happens, they didn't care about me. They don't care about a lot of people today. And that's what I fight for.

Aaron: That's so good. So personally, I've been spending the last couple of years of my life professionally working in industry of pharmaceuticals and some of the clients that I serve and I've been learning a tremendous amount of around cancer. And to your point, I can validate that even today, this concoction of combination of multiple drugs administered in a cocktail of chemotherapy is oftentimes a generalization of a number of drugs aimed at a particular cancer. But without clarity on which one in particular in the cocktail mixer will actually do what it's supposed to. Now, it's a combination of them two or three or five or whatever it is, or treatments, and that they believe to have an effect. But to your point, it also has these other unintended consequences that are permanently lasting. So we have a family friend that has a colostomy bag permanently as a result of his, his chemotherapy.

And so I've actually had physicians and conversations with them. Talk about this. I don't know, I'd call it like some degree of you know, it's unfortunate and it's terrible and it's shameful and it's awful. And yet we don't know what to do about it because we're not able to be precise in the localization and the specificity of cancer, as we would prefer that we're still doing things kind of more with cannons than we are with marksmanship and so big artillery versus laser precision.

Matthew: Right.

Aaron: And the thing that is also very true when I appreciate, and I think this is helpful for listeners to know, is that what you're talking about is becoming your own advocate. And I think what happens in the world of, in, I have a lot of personal experience in this as well in the world of medicine, we walk in the door perceive that the expert is the doctor and the nurse and the other side of the table or the bed. And we defer all of our judgment to their best recommendations without actually going through and doing the due diligence to find out what are the implications? What are the alternatives? What, what does it mean this lasting? So thank God you had a, an uncle who was willing to step in and advocate for you, especially even 25 years ago. That's really, I would guess even more abnormal given the time of life that that was for you.

Matthew: Yeah. I think my uncle as a metaphor or euphemism or an idiom plays into today, because, you know, back in the nineties, they were like six chemotherapies. And today there's like 150,000 different genomic testing drugs in this combination therapies. And the permutations are that much more convoluted where even your prescribing doctor might be the best in the business. It's nearly impossible to keep up with the approvals and the usages and the best practices and standards of care. And, and without getting all geeky the choice, the fundamental choice that a, I'll say a health consumer. I don't like to use the word patient. I think patient kind of like marginalizes you human. If you're just a health consumer in a store, you didn't want to shop in where there's only a supply chain and no demand. Who's going to help you be that greeter. There's a great metaphor for you. Who's the greeter.

And you know, if you're lucky enough to be in a major metropolitan area with a comprehensive cancer center, that's highly funded by individual donors on the government. They'll have the concierge, negotiate navigators and clinical care coordinators and fertility navigators and insurance, copay navigators. But most people, you probably know this are treated in the middle of nowhere. 80% of cancer treatment at any age is in community centers, which are state-based and underfunded. And don't have access to the latest and greatest. And it's not their fault that you don't have a greeter, right?

Aaron: Yes

Matthew: So there's no national public health advocate to guarantee everyone that gets diagnosed with cancer has age appropriate, culturally appropriate language, appropriate educationally appropriate navigation to get them through the system. And one might assume it's in the interests of pharma and bio and the PHR may lobby groups to make sure everyone gets on the right drugs, but they're not doing anything about it. So it's up to the people because that's the only thing that's ever driven anything.

Aaron: I have two friends I can think of top of mind right now that have recent cancer diagnosis and their families. So what's your advice? What do we do different?

Matthew: I think it's an of one, it's really an of one. They have this jargon term now called social determinants of health, SDOH. heard of that?

Aaron: What does that mean?

Matthew: yeah, exactly. It means that happens and then more shit happens and then more happens and then happens. It's the end result of things happening to you that you had control over it didn't have control over it. If you're born black, you're born Jewish. You weren't in Minneapolis, you born in Denver, you know, you were raised rich, you were raised poor. You went to public school, all the determinants that make you who you are perinatally, genetically, socially, economically contribute to whether you live or die based on something bad happening to you. That's all that means. So it's not possible for there to be a one size fits all. When 20% of the bell curve are natural Moxy driven advocates like me and 80% don't necessarily have that and need to be coached into becoming angry and realizing what they needed for themselves.

Or they may not have an uncle like me. They may not have family. They may be a single mom. They may be poor. They may be unemployed. It's nearly impossible to just say writ large outside of don't go to dr. Google, which number one top of the list I should live with that don't go to dr. Google is to have as much of a realistic conversation with the people you can get in touch with like your doctor, like a nurse. And ideally, you know, we're living in more of a content demand driven health economy. Now there are resources that exist today that didn't exist even 10 years ago that have gone well far and beyond the limitations of what the non-profits who occupy those cancer spaces can do. And I'm looking at groups like Talkspace. I have no financial interest in any of these companies, but I look at Talkspace. I look at themighty.com I look at when Facebook does something, right, every now and then there are a couple of really strong Lifehack driven patient groups in that, that people get great information from. It's really hard to know exactly where to laser focus yourself when you're looking at a Jackson , Charlie Brown teacher experience, when someone says you have cancer.

Aaron: Okay, all right, I am going to dissect some of what you just riffed on there and see if I can pick, pick my way through it with you now. So first starting, you said, don't go to dr. Google, correct?

Matthew: I think that the internet used to be useful and I think it's absolutely completely disgraceful today in health.

Aaron: So would you agree that especially if you're facing a cancer diagnosis that Google actually serves that, although there's a wider aray of information, some of it fact-based and actually science-based some, just from some personal experience that early on, especially it can just serve the role of scaring you more than actually being helpful.

Matthew: I think it serves the opposite of what democratization can truly mean to help people.

Aaron: Okay.

Matthew: So say more democratize content is your ability to get anything that you want at any time with no filters. There's no good housekeeping seal of approval on what Google serves up. It's algorithm, they're a private company, they do what they want, it's in their interest to give you what you wanted. And they, they're just a confirmation bias engine on a good day. So how do you get credible information that you can trust and what we're seeing now in the data and a lot of peer to peer research and the beltway is that people are getting more information that's credible and valuable to them in a non-clinical way from their peers than ever before. So peer hunting is actually a thing that happens. Now, there are now services that you pay for it to help you find a peer, or you can ideally fall upon, you know, Talkspace, the mighty, some of the Facebook groups and some other nonprofits that happened to be out there.

But I'm going to go back to one thing that was stated by the an incredible advocate woman Ellen Stovall, the late Elon Stovall who founded the national coalition for cancer survivorship. And it's very simple that your quality of life, is tantamount to your quality of care. And it's not in the interests of the health system to govern your quality of life. They're there to help make sure that you get your drugs, you're compliant and you get out of there as soon as possible. But your quality of life is really what that one metric is when you enter that store. So what I mean by democratization, doesn't help is you really do need a tribe. You need a colony, you need someone who has vetted with vested interest what's in the best interest for you. And no one else finding that is what's that stick like a Wayfinder that you gotta to look for water, right? Whatever that thing is, you need a version of that. And it just, I hate to sound so negative. There are so many more benefits today with what the internet has done for peer to peer. It's just impossible to find what you need when you need it.

Aaron: Interesting. Okay. So back to using, yeah, I don't remember what the Australian New Zealand term actually for that little water finder device, the Wayfinder, but what you're saying is a tribe is more important as a community that you belong. So finding that is imperative and this peer hunting, these examples, like you gave Talkspace and The Mighty, you said those actually can then help you. And then you're receiving them curated information in, in, through that filtered croup, who are advocates on your behalf, sharing a journey with you? Is that correct?

Matthew: Yeah. I say tribalism in the sense of when it's done the right way. And I mean, when I started stupid cancer, which is the nonprofit I founded in 2006, to be the voice of gen X and cancer, it was the first of its kind to be very age specific and very, you know, pop culture and non-dogmatic, and we didn't care where in your body the cancer was. And we were very much along the lines of what you have in common, not what's in your body. And that created the first concept of, of a tribe I'm breast cancer was really where all of this got started in the late nineties, where the women were rallying for bed. It was like the act of its day for breast cancer and prove that that type of tribalism can really in your better policies, practices, medicines, treatments, whatever, but when done, right, it can be a godsend and a lifesaver for people to make better decisions on life, hacking their way.

I keep going back to the word life hacking. And so I was like, how'd you get to treatment? What'd you do with your kids, had to tell your mom what to do about school had to fill a gap in your resume. Why did you do it? How did you negotiate with insurance? People have that life experience that you need, that you can't find on the internet. You can't find in a Google search. And, you know, as much as I really believe in web MD's value, they're not speaking person, they're speaking clinical academic, that's their job, but not everyone speaks that language.

Aaron: Yeah. That's so good. Which is so much more helpful, right. Of what do I do with my kids in a gap in my resume. That's really like that's rubber meets the road life on life stuff. So super helpful. I have another question for you just to take a different direction. As I'm reading through your bio, what I'm perplexed by is on the one hand you have Newsweek saying you're a cancer rebel, and then you have Deepak Chopra calling you a peace healer. How does, how do those, how are those both true?

Matthew: I would like to say that I am happily bipolar and it's the gift that keeps on giving that may or may not be true. It's true. But when I'm able to really hone in on art and creativity, I still play piano. I still give keynote speeches and piano concerts. And I mean, not today in the COVID world, but yes, I think that from a, just a creative contributor to society as a composer and a performer. Yeah. I, I feel like I really try to give people a sense of purpose on this earth. No, no one can really square the circle of why the bad things happen to good people. But at the end of the, what we have in common are like three universal languages, it's music and math and love.

And I garnered a lot of that in the teachings of Deepak Chopra, who I know and have met many years ago, and a gentleman named dr. Bernie Siegel, who wrote a book in the eighties called love medicine miracles. He was also one of my earliest mentors. And he liked the fact that I was like an angry Woody Allen Jew, who was just and cynical, but he taught me the beauty of appreciating that you don't have to have anyone Deity that you pray to, but that the energy of the universe manifests itself in mysterious ways. You don't need to explain as long as you just embrace the ability to understand that you're alive in the space and love is all we need. the most money and money and houses and clothing and stuff. But the gist is this transformational approach to appreciating wellness in the mind is love.

Aaron: As you launched stupid cancer. And then now you're leaving that and you're starting a media company off skirt media. Tell us more about this.

Matthew: You know, stupid cancer was a labor of love of passion. It was the community and the organization and the resources and support. I wished that I had in 1996, when there was no internet and the AOL CD is roam freely around the country. So it got to a point where I realized that I had built the glass ceiling for myself and I was self-limiting in where I felt I could make a bigger dent in the universe. And, you know, I mean, I wrote a big exit on LinkedIn and really have tremendous gratitude to the people that helped make me and the rising tide of collaborators and advocates that we, we built something amazing, but my dad always comes up with wonderful things every now and then. And he said, you know, moving on is hard, but knowing when it's harder. So two years ago to the date of this recording in August of 2020, I decided to leave stupid cancer, took about nine months to de Velcro myself from 14 years of running it.

And I took a sabbatical and spent a lot of time with my, my colleagues and my community and my family members and friends. And it dawned on me that the one thing I really missed was being a broadcaster. And I'll preface this by saying that stupid cancer was very unique in that it had a radio show, a talk radio show called the stupid cancer show back when talk radio was terrestrial. And on some measure of like dial up AOL, you know, radio stuff, the stupid cancer show ran for 500 episodes and four and a half million listens in 2000 interviews. And it was really an immediate staple in oncology. And I just happened to be the shock jock that brought everything together. And I missed being behind the mic. And I missed there being loud, boisterous broadcast voices, advocating for the American citizen that deserves better dignity when happens.

And I built a company around creating more, again, going back to where we started more ME'S. Although we want to add that in asterisk, who are the other boisterous Howard Stern ish, you know personalities that can get behind a mic and convene conversations and call them crap out. So OffScrip media really is the first audio broadcast network focused on consumer health and patient advocacy with a little pop culture thrown in there because I'm an eighties guy and regrettably unrepentantly will make editor references as much as I can. So off-scrip media is a labor of love, born of stupid cancer. And we are a bit of a gimlet for healthcare and producing really groundbreaking podcast documentary series on the history of genetics and cancer, survivorship, and Twitter and breast cancer. And we're doing a series next year about African-American experiences in breast cancer where we're mortality rates are 10 times higher for obvious reasons. So it really has become a true passion driven private sector and enterprise for me is my second act. So I encourage your listeners to check out OffScrip media. There's no T it's off scrip. And I get the chance to get back behind the microphone my own show, although I am out of pantients, how jargon a dad, tongue in cheek dad joke that is, but it pantients is P A N T I E N T S.

Aaron: What have you found to be impossibly challenging and taking longer than you would have thought

Matthew: Nothing, because I wanted to build this company that had nothing to do with being contingent on investors or ad revenue. I built a company based on my reputation and my wonderful relationships with, with real strategic partners and clients and vendors and pharma companies and biotech and CPGs and consumer. I just have a wonderfully envious network that I'm incredibly grateful for. And these individuals largely helped me conceive of the fundamental business model behind this company. This is anecdotal, but stupid cancer was unique because we were never donor dependent. And that is fundamentally antithetical to how every nonprofit is run. You know, I never came to you and said, Hey, I needed a dollar. Can you support me with a dollar not in 14 years that we ever do that? So we were funded by corporate partnerships that caused marketing. We had, e-commerce had large conferences, did a PR marketing lead gen surveys, studies, analyses, interviews, focus groups.

We did road trips, all these gimmicky things that kept us sustained through corporate dollars without contaminating our mission kept that alive. So I wanted to carry that through and not fall into the Gimlet gap. And I listened to the startup podcast from day one. I don't want to be stuck in a rut, my company sold to some investors as much as I might know that an investor and care about their investor. So were based on consulting and strategy and delivering, sponsored content and meeting white spaces with storytelling that would not otherwise exist if they went to some big box agencies.

Aaron: You're a domain expert within the domain that they serve and you're doing it in partnership because I think ultimately I think they're the companies, the pharma companies that the inventors everybody's actually at the heart of it are truly agreeing that let's, let's get rid of this thing and let's care for people well, and let's not turn patients into objects and that, and people are waking up to that. So that's encouraging to hear that those corporate sponsors and nonprofit sponsors and foundations and others are readily excited to have another voice, a ruckus making voice in the space, help patients. And you had a better word. What was the word that you like for patients and stuff?

Matthew: I just say health consumers or consumer health.

Aaron: Yeah. People deal with that went sideways. So I think it's beautiful. Yeah. I think it's super great. What was really interesting to me in reading through the bio was this no nonsense. What am I, what I gathered was that you actually cared more about the mission then you cared about building a platform for yourself. And that was some of what I was curious about investigating was, is that actually true? And what I hear from you is it sounds positively and wholeheartedly true is that at the end of the day, you're attempting to do for others, what wasn't done for you, but directly you had enough people in your community that actually aided you along the way, and you see the pitfalls and risks. If people go it alone. And at the end of the day, the providers actually do want the same thing. They just are hamstrung in so many ways for the institutions that they've been part of for decades operate a certain way. And it does take ruckus makers, and these stories of heroism and advocacy to help enlighten them for what becomes possible.

*We have done our best for this transcription to accurately reflect the conversation. Errors are possible. Thank you for your patience and grace if you find errors that our team missed.