CancerSurvivorMD®

Survivor Chat: Matthew Zachary

• Brad Buchanan and G [Josie] van Londen • Episode 23

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A 21-year-old pianist gets brain cancer, refuses chemo to save his music, survives 30 years, founds Stupid Cancer, and now wants to organize 20 million cancer patients into a political force. Josie and Brad sit down with Matthew Zachary to talk history, late effects, parents, creativity, survivor guilt, and his next act: We The Patients. https://wethepatients.org


Relevant links pertinent to this episode:

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[00:00:00] Introduction
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​[00:00:00] 

[00:00:05] G van Londen: hello everybody. Welcome back to a new episode of Cancer Survivor md. We're very excited to have today a very special guest, Matthew Zachery. But he goes by Matt, and he has so much to share that we will try to condense it in one hour. And whatever doesn't fit, we'll invite him back. His story is very interesting and I hope you will enjoy it as much as I do.

[00:00:33] G van Londen: I'll put the relevant links to today's show in the show notes. And having said that, I'm now going to give it to Brad, who will introduce Matt . Go ahead. 

[00:00:45] Brad Buchanan: Thank you, Josie. Yeah. I'm really excited that, Matt Zachary is with us.

[00:00:50] Brad Buchanan: he is, I think, one of the most important and most articulate voices in the cancer advocacy space and has been for a long, long [00:01:00] time. I first met him, last year at asco, the, what I call the Cancer Super Bowl. and I knew him primarily then as the brain, and I use that term, advisedly behind the Stupid Cancer, podcast.

[00:01:15] Brad Buchanan: but he has so many projects that, we're going to quiz him much further about that. But Matt, I guess our audience always wants to know, you know, what's your cancer story? how did your, cancer get diagnosed? How's it been treated? How are you doing in general these days?


[00:01:34] Matt's cancer story - Delayed Diagnosis
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[00:01:34] Matthew Zachary: thank you Josie. Thank you Brad, for having me on the show. my dad who's still with us, always says that any day above the grass is a good problem to have. So, with all respect, to those of us that are fortunate enough to be above the grass, it's a pleasure to be here. And I really mean that sincerely.

[00:01:52] Matthew Zachary: for those listening, my story is more of a history lesson than a here's what happened to Matt because it is a [00:02:00] 30 year story and everything that I talk about when I share my story, when I get up on stage, whatever it is, is always through this lens of perspective. the umbrella here is that everything I talk about largely doesn't happen anymore, but it's good to know what used to happen.

[00:02:18] Matthew Zachary: 'cause we look at progress. So that's my, my perspective prologue. Uh, to the saga of Matt. So, chapter one is, I was born and raised in New York City. I was a prodigal concert pianist, jazz pianist, musical theater pianist, composer, nerd, marching band geek. Pretty much that was my DNA And I went to undergraduate to study film and music.

[00:02:50] Matthew Zachary: I wanted to go to grad school to write for Hollywood. I wanted to be John Williams as one should not really know what they wanted to do when they're 19, but I did. [00:03:00] And that was where, you know, man plans, God laughs. During the summer of 1995, as I was reentering college to finish my senior year, I got back to school and I started to play again.

[00:03:14] Matthew Zachary: 'cause I took the summer off and I noticed that I couldn't arpeggiate as well with my left hand. And for the non-musicians to, arpeggiate is Italian for running your fingers very quickly, up and down the keys, the, the fastidious nature of, of fine motor coordination up and down the keys. And I noticed immediately it wasn't as good as it was when I finished up my junior year.

[00:03:37] Matthew Zachary: And I said, oh, that's weird. I'll just practice harder. So being an invincible 21-year-old as you should be completely invulnerable to realities of mortality, I just trudged on. It Got worse. I eventually lost the ability to write. im a lefty. So my left hand couldn't really grip a pen. I wound up typing on my [00:04:00] laptop.

[00:04:00] Matthew Zachary: I had a laptop. Yes, it was 1995. I had a laptop kid, sorry about that. And I had to type in my right hand. Eventually I had enough to go to the doctors on the college campus and say, what's wrong with me? And they said, oh, just put your backpack on your other shoulder. You're clearly, as I'm talking to an oncologist on the air, yeah, basically you wouldn't think to be taking a 21-year-old seriously with what they thought was carpal tunnel, Epstein Barr meningitis, mini stroke, early onset MS.

[00:04:31] Matthew Zachary: And as all these things were coming to bear out of the malice of babes. And it turns out that, you know, none of that stuff really worked. And it kept getting worse and worse and worse until finally, I had a fainting spell and started slurring my speech. That was when the doctor was like, oh, yeah, you should go see a real doctor.

[00:04:52] Matthew Zachary: So yeah, nothing against campus medical in the 1990s at a state university. But I did go home. [00:05:00] I saw my doctor, and again, in a moment of just pure ignominious ignorance, I said, yeah, I'd, I'd like to finish the semester. Can I come back in two more weeks? And that was the end. Those two weeks, everything fell apart.

[00:05:16] Matthew Zachary: so then I got home for the second time, MRI thing in my brain, you know, gotta have surgery. That's kind of chapter one. But I, I like to add on a little 1990s bumper to that. And this is for like anyone that checks a census box over the age of 45 years old. So my mom and I went to the radiology group.

[00:05:41] Matthew Zachary: We didn't know what MRI even meant in the nineties. Again, history, as you know, as as a teacher. Got the scan, went out to lunch, got back to the house, and drum roll. The answering machine was blinking. Now everyone knew that it wasn't supposed to be [00:06:00] blinking at 12 o'clock on a weekday. And we knew right away that that was something was please come back.

[00:06:06] Matthew Zachary: And they said, come back. We found something. So I basically diagnosed with brain cancer on a blinking answering machine. And that's kind of phase one.


[00:06:15] Matt's Cancer Story - Treatment Decision Making
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[00:06:15] Matthew Zachary: Uh, phase two goes a little more quickly. Surgery, radiation, chemotherapy, I declined because it turns out, and you'll appreciate this as an oncologist, the cocktail of platinums they wanted to give me would've given me permanent neuropathy and hearing loss.

[00:06:32] Matthew Zachary: And as a pianist, I don't want that. I'd rather die. fortunately I have an uncle who was a geneticist and who knew to tell me to ask the doctor what was in the cocktail. Had I not had him, I would never play again. So if there's one aspect of this part, one that is a through thread to, to today's narrative, it's you shouldn't need my uncle to save your life.

[00:06:58] Matthew Zachary: That [00:07:00] who you are as a person is tantamount to what is wrong with you biologically. So no chemo still here 30 years later. And that's chapter one. I'll stop there 'cause it often induces lots of questions.

[00:07:18] Brad Buchanan: Yeah. I was like, what was it like living in a Seinfeld episode, with the answering machines and and so forth? I don't, I don't think they ever had the cancer episode, of that show. But, you know, I, I do take the laptop business rather personally since I still of course have two laptops, as a matter of fact.

[00:07:35] Brad Buchanan: so I'm, I'm, I guess I'm of your generation and, and stuck there for the, for the foreseeable future. But, uh, thank you. I don't have any medical questions, to be honest with you. Although I will say that I lost two, school friends to cancer of, different types when I was early teenager.


[00:07:57] Psychological Burden of coping with cancer as a adolescent / young adult (AYA)
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[00:07:57] Brad Buchanan: And in those days, cancer simply meant [00:08:00] death. that's what it meant as far as we were concerned. Did that, did people treat you differently because you had cancer? Were, were they sort of like, gee, Matt, it was awfully nice to know you or how did coping with the psychological burden of, gee, I, I'm, I'm really young and I might be dying Right.

[00:08:20] Brad Buchanan: How did that hit you? 

[00:08:23] Matthew Zachary: I found myself in a rare position that I didn't realize till years later that I wasn't pediatric. Although I was in pediatrics, but I wasn't an adult. I fell into a gap that later became the adolescent young adult cancer oncology bracket. And when you're a AYA, it's a different sentiment from the public and it's a different sentiment from the industry.

[00:08:47] Matthew Zachary: You're not quite the, oh, you poor baby. Look at you. You're so cute, but you're not quite the, oh God, my, my retirement home. What am I gonna do? And I didn't feel pitied by [00:09:00] anyone, but I just felt, I guess, unintentionally ostracized by the system. 'cause I'm in a pediatric neuro-oncology clinic with squishy toys and big birds painted on the wall and clouds on the ceiling and plush carpets.

[00:09:16] Matthew Zachary: And many of the parents were in their twenties. So I could have been perceived as a parent of a child in treatment. And back then there was the AIDS movement. Let's put HIV back into perspective. That was contagious. That was, I mean, there wasn't a, a gay thing about cancer, but there was definitely a contagious thing about cancer back then.

[00:09:40] Matthew Zachary: And you had to kind of still whisper it a little bit. Man has the cancer like in the old movies. this is a trope to say this 'cause everyone says this, that my friends and family were fabulous 'cause they kinda had to be, but I lost a ton of friends who didn't understand what this meant. There just wasn't that sense of, of, of social construct.[00:10:00] 

[00:10:00] Matthew Zachary: Around this until like Livestrong kind of really popularized to the best of the use of that word, the, the awareness of it or the tolerance of it. And uh, you know, it, it was the strangest bracket to being. The short answer to that question though is I was so unbelievably beautifully ignorant and invincible, that mortality never even once entered my psyche.

[00:10:29] Matthew Zachary: I was more like just, this is just a blip. I don't want this to get in my way. I got things to do. Mortality never really set in until years later. and I think that was just kinda like we learned about the post-traumatic nature of the boat wake years later you don't really understand what you went through, but that is the simplest and yet somehow the most logorrhea driven answer I can give your question.

[00:10:57] Matthew Zachary: 

[00:10:57] Brad Buchanan: I love a good logorrhea driven, answer, [00:11:00] Matthew Verbal diarrhea is, one of my chronic, ailments slash I dunno if it's a bug or a feature at this point, doing a podcast. But, no, I mean, I think that's a great answer and, you know, yeah, I, I think that a lot of, yeah, I, I think a lot of people should be grateful to you for realizing that there was this awkward, you know, no man's land, between childhood cancer, which is just, you know, you pity everyone involved and then adult cancer, where, you know, at least the people have had a pretty good life. 

[00:11:39] G van Londen: Matt, I wanted to tell you that I can relate to going to Children's Hospital in my fifties because my doctor for mitochondrial diseases in a children's hospital, and it's, it's pretty special to be in that environment.


[00:11:56] How to make the best health care decisions for you
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[00:11:56] G van Londen: I also wanted to comment on what you mentioned that the [00:12:00] cancer world has made a lot of progress and the survival has improved a lot to the point that now we're starting to look at maybe less is more. Meaning less treatment, less imaging, less radiation exposure, less, Toxicity with the idea that we maintain your survival, but we decrease the amount of morbidity, the side effects that you experience afterwards.

[00:12:29] G van Londen: So I, I like how you spoke about, your uncle bringing up that a lot of the treatments could cause problems for, for the love of your life, music. And I understand that not everybody would like to make that choice, and not everybody can make that choice. You made that choice. It's sort of almost, maybe if I use that word, gamble, but in your case, it turn out to be all right.

[00:12:59] G van Londen: But one of [00:13:00] the things I'm always known for is that I am encouraging survivors or patients to speak up and explain to providers. What is their philosophy in life? Are you more like an Eeyore or more like a Tigger or you're bouncing around, you wanna have things done as much as possible as early as possible?

[00:13:23] G van Londen: Or are you more like an Eeyore that it hits you in the face, when it hits you in the face, meaning everybody's different And as long as your cognition is intact, we all make our own decisions. Weigh the benefits and the risks, which is what you did even at a very young age. I don't know if there's anything you can comment on that or if you would like to comment on that, but I thought it was a very interesting observation for somebody of that age.

[00:13:52] Matthew Zachary: Well, you don't realize you're doing it while you're in it. I think this is all, you know, just backlog perspective [00:14:00] on choices that we didn't know we could be making. And the through thread of that Uncle Jay story. It could be one of the seminal narratives of 2025, which is you shouldn't need him to make the best decisions for you.

[00:14:15] Matthew Zachary: And if we wanna look at progress, we now have navigation as almost a standard of care, and in many cases reimbursable in certain clinics next to some professional societies and reimbursable navigation to prove the obvious. When you have an Uncle Jay, you dial less, you shop for less, and insurance is happy.

[00:14:36] Matthew Zachary: I went to look, look at a, from some ridiculous capitalistic vantage point here. Navigation does what it's supposed to do and you had to prove it to get reimbursed. So navigation today is a variant of having an Uncle Jay. it's not a solution for having an Uncle Jay, but in terms of, you know, if other people had an Uncle [00:15:00] Jay, odds of they do better.

[00:15:02] Matthew Zachary: To your point though, I, I like to quote a stat which tends to be a little unpopular when I say it, but it's based on real data, which is that the amount of people who get cancer these days is a, is a, is a boogeyman number. when I was diagnosed, it was about a million a year and mortality was like 80%.

[00:15:23] Matthew Zachary: Now it's 2 million a year, and mortality is like 60%, but of those 2 million, 1.4, stage two or less. So I have to take that into perspective two. Million's. Terrible. But I'd rather have 2 million and 700,000, stage three than 2 million, and everyone's stage four. So this, to your point, is we have to look at how far we've come and you hinted at something really important to me, which was when we finally didn't just realize,

[00:15:57] Matthew Zachary: the late Ellen Stovall of the National [00:16:00] Coalition for Cancer Survivorship, my mentor would always say that your quality of life should be tantamount to quality of care. That's jargon. What that means is who you are should not determine what happens to you. Biologically or biologically, should not determine who you become.

[00:16:15] Matthew Zachary: And now that we have that codified in science and survivorship and outcomes data and all the nerdy jargon stuff, what matters to you most should be the priority of your care team. And then they work backwards against that.


[00:16:29] Longterm after treatment of young adult medulloblastoma
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[00:16:29] G van Londen: Yes. You have such a way with words. You're very eloquent and I, I wanted to ask, but I'm not sure how comfortable you are, you said you had slurred speech. So that makes me want to ask, do you have any long-term side effects? What happened after your treatment was done and now, uh, any new bumps in the road with your health? Any [00:17:00] long-term side effects? Only, if you're comfortable sharing, 

[00:17:03] Matthew Zachary: I appreciate all of that. I'm an open book. You can ask me anything you want. I will likely have an answer for anything you ask, and I'll try to make the answer match the question.

[00:17:13] Matthew Zachary: So, I am the luckiest bastard on earth. I will be 30 years, in December as of this taping now the fall of 2025. I have had varying degrees of a comedy of terrors, of late effects and long-term stuff, but I am completely off the map. There is no data for me. I was an N of one back then. I'm an N of one today.

[00:17:41] Matthew Zachary: I had young adult medulloblastoma and they don't know why it sat in my brain congenitally in my cerebellum for 20 years. It morphed a little bit. The pathology was slightly variant. It didn't fit the cog protocols. They pulled everything outta their ass to think they knew what they were doing in hindsight, now. They [00:18:00] handed me like this might happen even with five years postcard. And sure enough, all of it happened. I have the obvious things, but there are things that I should have that I don't. I have no osteopenia, no cardiomyopathy. I have significant, executive function deficits, the long-term brain stuff, but I'll own this.

[00:18:23] Matthew Zachary: My imposter syndrome will drop for a moment. When I was told that all this radiation could affect my iq, the doctor's like, you have IQ despair, don't worry. So I'm leveraging my IQ despair that it hasn't really affected much of my cognition skills, but has affected executive function deficits. And my best friend is a neuropsych, and every now and then, he's just fun.

[00:18:49] Matthew Zachary: He gives me the test to see how much worse I'm getting in terms of X, y, and z. Um,

[00:18:54] G van Londen: matt, I'm gonna interrupt you here for a second because I'm not sure everybody who's listening knows what [00:19:00] executive functioning 

[00:19:01] Matthew Zachary: An executive function deficit is very similar to like a neurodivergent brain. you can miss a lot of cues. You don't connect A to B as logically, as most people do. You lack facial recognition skills. your eye hand coordination, can be a little, underdeveloped or, what are they called? Failure thrive.

[00:19:23] Matthew Zachary: my duodenum doesn't work. Of all the parts of my body that decided to not work after all the radiation that I had was the duodenum. So I have congenital gerd, so I've been on proton pump forever, calcium crap, side effects, you know, better problems to have.

[00:19:39] Matthew Zachary: I had a stroke in 2011. I have radiation vasculopathy of the pons. where the capillaries in the back of my brain are, like paper straws. so I'm on all sorts of medications to manage that. And so far, so good. I'm developing a, retinal, palsy in [00:20:00] my eyes, 30 years later, causing a little bit of, double vision.

[00:20:05] Matthew Zachary: And, I mean, I've had all sorts of other things that, you know, you can kinda add them up. All things considered, I'm a fricking miracle. I get up every day. Things that are starting to hurt, I think are hurting just 'cause I'm now 51. So I'll take the aging over the late effects, although at some point they're gonna cross over and I can't use one, an excuse anymore, but I'll, I'll end with a, again, going back to my dad.

[00:20:32] Matthew Zachary: You'll appreciate this. And he's, 79 now. God bless him. The secret to life is to clean up nice. Make it look good, and never ever look under the hood.


[00:20:42] Parents of AYA cancer patients/survivors
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[00:20:42] G van Londen: I'm going to ask you about your father. 

[00:20:44] Matthew Zachary: Yes, please. 

[00:20:45] Speaker: is your mother also still alive, if I may ask? 

[00:20:47] Matthew Zachary: Yes. 

[00:20:48] G van Londen: So did you ever talk with them, how did they feel when you were diagnosed with cancer? Because you may have been blissfully ignorant, but I have a feeling that [00:21:00] they may not have been.

[00:21:01] G van Londen: And, how, when did you talk with them, if ever, about how they experienced your, diagnosis or treatment phase? 

[00:21:12] Matthew Zachary: Oh, uh, they've been. I mean, they're just as well known as I am in the space at this point. Now. My dad basically became the mayor of the Young Adult Cancer Movement. He's known by millions of people.

[00:21:23] Matthew Zachary: He ran the, the parents of AYA support groups for 20 years. He pioneered that entire space. So my parents have been very open about this. What happened was I was just so blissfully ignorant. I didn't even think to tell them what was going on until I got home. When I slurred my speech and I saw my doctor, and my dad's like, what's wrong with you?

[00:21:46] Matthew Zachary: I was like, oh, I just slurred my speech and I can't use my left hand. He's like, what the hell? What's wrong with you? Why do you tell me these things? So then of course my mom took me to the scans and we're not expecting anything to happen. But of course [00:22:00] then we went back, they found the tumor, she lost her shit.

[00:22:02] Matthew Zachary: and then, you know, they did what they had to do as what any parent would have to do. They go into combat mode. And you just have to face what's going to be happening. my mom has been very, very, open about how she couldn't deal with it and she kind of collapsed and faded away. Had to quit her job and be herself.

[00:22:22] Matthew Zachary: My dad lurched into Hercules, Dwayne the Rock Johnson mode, and powered through everything with insurance. Insurance in 1996. Different story. endless bills, endless phone calls, endless faxes for three years. my dad chose to lean into all of this and take an active role in stupid cancer. We can get to that origin story next.

[00:22:48] Matthew Zachary: going back to some of the mortality issues that I didn't face till later, about three or four years after I was, you know, quote cured, even though back then it was five years was your magic number [00:23:00] back then. I realized how much pain and suffering I had caused my parents. That survivor guilt, you know, you logically know you didn't do anything on purpose, but then you have to look back and reflect on, look what they went through because of me.

[00:23:20] Matthew Zachary: I mean, I'm 25 years past that, of course at this point, and everything is beautiful and I'm the luckiest guy with my kids and my family. But I would say that was more significant than them freaking out. 'cause it was fight or flight. There was no rational thinking. There was no, let's plan it this way. Oh, we can go this way now, make a left turn.

[00:23:39] Matthew Zachary: It doesn't work that way. And yeah, I wasn't a baby, but I wasn't an adult and my bedroom was still looking like my kids' bedroom. But I was in college for four years at that point. Now the last thing on their mind was Matt's coming home. I was supposed to go to LA. So the dynamic. And my brother, by the way, my younger brother was a freshman.

[00:23:58] Matthew Zachary: At college. So he was away [00:24:00] this whole time this was happening. So that was a whole other dynamic that took many, many years to figure out. And, I just leaned into, I mean, I'm trying to remember 29 years ago, but I just kind of followed the leader, and the leader became my dad.

[00:24:19] Brad Buchanan: I'm really kind of, moved that you're sharing the family's reaction here. And, um, you know, I, my, my parents, have both had significant health problems. after my run-ins with two different types of blood cancer, my mom ended up passing away of complications from B-cell lymphoma in late 2021.

[00:24:42] Brad Buchanan: my dad had, Two pretty bad, mental health episodes. he has since stabilized. But, I too suspect that watching me go through my, cancer nightmares, destabilized them both, in a pretty dramatic way. I can understand [00:25:00] because, every day I went in for my cancer treatments, I would pass the, pediatric ward.

[00:25:06] Brad Buchanan: thank God I'm going in for my cancer treatments instead of one of my daughters going in for her cancer treatments. watching your child, suffering through, frightening potentially terminal disease is, much worse than doing it yourself. 

[00:25:22] Brad Buchanan: I can understand why we both have this kind of sense of survival guilt that we put our parents through hell without meaning to, of course. But, you know, I would've done anything to survive. And I wonder, maybe my mom saw the price that it exacted on me and on my family, and wasn't maybe quite as willing to do all that.

[00:25:45] Brad Buchanan: I don't know. But here's where I'm going with this, Matt.


[00:25:48] Matt's way of coping with survivor guilt
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[00:25:48] Brad Buchanan: Um, I, I found the only way to cope with survivor guilt is to find a new sense of purpose. Not for why did I survive and someone else didn't, but what is my [00:26:00] survival going to do for the world now? Like, in other words, what is my purpose going forward?

[00:26:06] Brad Buchanan: And I'm wondering if there's any sense in which the ways you've managed to find so many different creative paths for your own advocacy efforts. It has been fueled to some extent by that, by that, survivor guilt slash why me slash you know, let's make all this mean something and be worthwhile in some weird backwards way.

[00:26:30] Brad Buchanan: Does that make sense?

[00:26:31] Matthew Zachary: It does. given the fact that there was no internet as we know it in the 1990s, there was really no way I could have known what my purpose was. I was on more of a redemption arc to play piano again, not knowing if my choice to not get chemo was gonna matter or not. And I was forced to get a job 'cause I couldn't go to grad school.

[00:26:55] Matthew Zachary: And I was kind of bitter about getting a job. I wanted to go to [00:27:00] LA and write for TV and film. my dad is a tinkerer. He's a handyman, taught occupational education trade. Does all sorts of stuff. So I learned how to code and solder mother boards and do all sort stuff in the basement, like goony style in the eighties, you know, dangerous stuff you shouldn't be doing when you're eight.

[00:27:17] Matthew Zachary: I knew all that stuff. So my fallback plan was I, fixed computers. I hunkered away in some, it cave and some ad agencies and I fixed computers, shying away from the world no one knew who I was. And I got to just kind of be a hermit, be it an it nerd hermit, andnot talk to anyone and just go to the city every day and fix computers and go home.

[00:27:38] Matthew Zachary: Eventually, I made some friends but I was scared to tell them that I had cancer. It took me years to even disclose any of that stuff. I didn't look sick my hair didn't really come back for a while, but I didn't look sick. I just looked like there was something really a little weird with Matt, it wasn't until I was able to

[00:27:59] Matthew Zachary: fully [00:28:00] rehabilitate my left hand and start playing piano again that I felt like I could have a little redemption for myself, not for the world. And what I chose to do was I chose to go out to LA and I met with my buddy from college who did go to grad school for, sound engineering in film, we were gonna be compadres.

[00:28:23] Matthew Zachary: And he invited me to record music, on a piano in a Hollywood sound stage. And I just pretty much vomited out eight hours of music, in one day. And he went into post-production and sound design and leveling. and I came out with two CDs with, 28 songs, 30 tracks on two albums.

[00:28:49] Matthew Zachary: I held them in my hands and like. I got this, this is my redemption arc. I'm doing this for me. So then back in those days, you could make your own CDs and press them yourself and burn them yourself and give them away. And I did [00:29:00] that. And I had two albums of music that I wrote because I was sick.

[00:29:07] Matthew Zachary: And that was my redemption. What I didn't realize whether that redemption would be what led to stupid cancer. 'cause those albums, which I didn't sell, wasn't like, you're like, you go to Sam Goody and look, look, Matt's on the shelf didn't work that way. Wound up in the hands of parents whose kids were sick or other nonprofits that were having events and people were asking for them.

[00:29:30] Matthew Zachary: And I gave them away. And eventually I got invited to give piano concerts at cancer conferences and cancer fundraisers. And I was the cancer kid that was told he'd never played piano again. That was playing piano again. And that opened up the doors to meeting people for the first time ever who were also not 80 and not eight, and were in the prime of their lives as 20 something Gen Xers who didn't [00:30:00] ask for this shit.

[00:30:01] Matthew Zachary: And I met my first cancer buddy because of that in 2003. And his name still, my, one of my best friends named Craig Lustig. I, we say his name, Craig Lustig. Craig also had brain cancer in his twenties and he was also bald. He Jewish from downstate, went to Binghamton, was in my acapella group and I didn't know him.

[00:30:31] Matthew Zachary: So I met Craig, the man ticked eight boxes on day one, and he became my rabbit hole into the world of back then called cancer Policy. Only because, just like I happened to have Uncle Jay, I happened to meet the man who was on the board of directors of the single most influential cancer policy group in the beltway, the National Coalition for Cancer Survivorship.

[00:30:58] Matthew Zachary: That is when I learned that [00:31:00] I could take what I was doing for myself and help other people, because what I did for myself wound up helping other people by proxy. And that is when Stupid Cancer came into my life as a result of joining the Livestrong Yellow Wristband phenomenon. 

[00:31:16] Brad Buchanan: Wow. Okay. So I didn't know any of that.

[00:31:19] Brad Buchanan: And you know, I was gonna ask something along the lines of, so I'm a poet and poets have this, like, we have to suffer to write our best work. Right? There's a kind of like inherent embrace of, um, yeah, illness, tuberculosis back in the day was the fashionable, poetic illness.

[00:31:40] Brad Buchanan: Now, of course, it's cancer. And, writing about cancer was in a way very stimulating for me as a poet. I think I wrote some of my best, poems about my cancer and cancer treatment. And I was gonna ask like, was there any sense in which, the sort of tragic young genius in the music [00:32:00] sphere was motivating you?

[00:32:01] Brad Buchanan: And I think, you know, that archetype was clearly there in that drive for redemption and creativity. But then the way you described your, creativity that was just kind of an upsurge of your inherent, drive to express yourself musically, how that morphed into. connections in the world of cancer and in advocacy.

[00:32:27] Brad Buchanan: That's a magic kind of alchemy that I had no idea about before you just, mentioned it. and frankly, I had something similar with, I wrote two books about my medical, problems. And I realized, gee, writing poetry was a big, coping strategy that I found so maybe other people could benefit from it too.

[00:32:49] Brad Buchanan: And then I went to the uc Davis Cancer Center, I said. Hey, how about starting a writing workshop for cancer patients? And sure enough, there was a woman there who had done something like that in the past. We got things [00:33:00] going and you know, now I do half a dozen recurrent writing workshops for cancer centers around the country.

[00:33:07] Brad Buchanan: But it was that same thing of like, I'm driven to create something, you know, and I didn't have to self-publish the book, but I would have, 'cause I self-published two previous books of poems just to get them out into the world. And, I love that the link between creativity and advocacy.

[00:33:23] Brad Buchanan: That's pretty special stuff, Matt. And thank you so much for sharing that and surprising me with it. 'cause I really didn't know, whether there was gonna be a connective, tissue there. But, that's awesome. I can't applaud you strongly enough for that. 

[00:33:35] Matthew Zachary: Well, again, it wasn't like I chose to do it with an intention.

[00:33:40] Matthew Zachary: It took me five years to rehabilitate my left hand to the point where I felt I was decent enough as an artist, but I would never be who I was. And I, that was, you know, you, you lose your identity as an artist. You lose your identity. What you, you know, Beethoven went deaf. Right. Um, [00:34:00] what do you do?

[00:34:01] Matthew Zachary: I was not expecting what I was writing for myself to, in the best sense, metastasize into culture and get heard by people. And then, you know, the irony of the kid that we told would be dead and never play is alive and playing little yarn there became a bit of a funny trope. And I don't tell that part of the story 'cause it's, I don't know, not that I choose not to tell that part of the story, but getting from you're gonna die to your living to, I met a cancer buddy to stupid cancer.

[00:34:34] Matthew Zachary: It's kinda like the. The, short version of the story.


[00:34:38] The Cancertainer
---

[00:34:38] Matthew Zachary: But I will tell you one thing. I was labeled once, I think it was the Hudson Current, some Hoboken magazine, or whatever it was, called me the cancertainer and oh my God. And I was, I don't know the articles there somewhere. It's probably in a box somewhere in my basement.

[00:34:56] Matthew Zachary: 'cause I kept all my media, my print media from the early two thousands [00:35:00] and I think that was the term that circulated around who's this cancertainer kid? 'cause I'm a Billy Joel Freak and obviously the entertainer and everything. That might have been the spark. Like I didn't want to give birth to the cancertainer.

[00:35:15] Matthew Zachary: I wasn't Matthew Zachery. There was nothing there. It was just like this kid fixing toner and soldering motherboards and changing ram out for ed agencies. And I'm now the cancertainer. Okay, I'll show up. But you put it to the universe and you know what the universe is gonna do with it. 

[00:35:34] Brad Buchanan: Well, yeah, I mean, that is the perfect way to describe, the fundamental drive of creative people, right?

[00:35:41] Brad Buchanan: Like, we have no idea whether we're gonna ever make any money from this stuff. And on some level, we don't care. I just didn't want to be ashamed of my urge to create and to share with other people, you know? And 'cause I think there's a lot of self-doubt, a lot of like, oh, am I doing this for the right reasons?

[00:35:58] Brad Buchanan: Did I give myself cancer? [00:36:00] 'cause I wanted to write poems about cancer? 

[00:36:02] Matthew Zachary: Yeah. 

[00:36:02] Brad Buchanan: You know, there's just so many little questioning demons in your brain. 

[00:36:07] Matthew Zachary: Mm-hmm. 

[00:36:07] Brad Buchanan: that I think sharing stories like that where the creativity and the sharing then does somehow translate eventually, and organically into advocacy that makes a difference in the real world for other people.

[00:36:24] Matthew Zachary: Yeah.

[00:36:24] Brad Buchanan: You know, and like I am, I think I'm two steps down the path that you've already taken a hundred steps down. So I, maybe I'd like to transition us to, just telling us more about stupid cancer and what, what that was all about from your perspective.


[00:36:42] What is the Stupid Cancer Community
---

[00:36:42] Matthew Zachary: So I mentioned Craig was part of this massive policy group in DC and he was also connected to Livestrong in its pre heyday, like before the yellow wristbands took over the planet.

[00:36:56] Matthew Zachary: And they were just trying to figure out what they can do. [00:37:00] And I was at like starstruck to meet other cancer survivors who were running nonprofit. I don't what a nonprofit was I the United Way? You know, whatever. Like, that's it. Great. These are like luminary people in my life that I was, I can, I want to know you want to be with you, please like me, can I come?

[00:37:15] Matthew Zachary: Can I swim in the pool with you please? And it was just so welcoming to get there. And there was something called the Live Strong Young Adult Alliance. It was a bit of a thought leadership incubator that they kind of spun off into this own little nubbin with the term for it. And that was where adolescent, young adult cancer research phraseology things started to percolate in the academic world.

[00:37:41] Matthew Zachary: But there really was no public world for it. Most of the people there were brilliant, brilliant researchers, academics, nonprofits, policy people, scientists, data engineers, advocates. Uh, no populous, histrionic entertainers. Who knew? So I saw an [00:38:00] opportunity to build a brand off the heels of Live Strong that was populist enough to be very Gen X, very targeted.

[00:38:09] Matthew Zachary: 'cause I should add, as part of the benefit of working in the agency world, I learned secondarily about marketing and branding and demography and zigography and design and style guides and topography. I learned all the creative stuff while proxy to fixing your stupid CD ROM drives. So I apply all of that institutional knowledge to creating a brand.

[00:38:37] Matthew Zachary: And it had a, like most people wouldn't know, how do you build a brand? Like it's, there's a lot of science behind it, a lot of psychology behind it. But I wanted this to be just anti ribbon. Anti pink, anti athlete, anti fundraiser, total Gen X, the right amount of anger. But still fundable [00:39:00] was the alchemy that I went through for like six months with some friends of mine.

[00:39:05] Matthew Zachary: But the whole point was, we don't want your money, your broke ready. We want your voice. We want you to sign up. We want you to be angry with us 'cause here's what we're gonna do now. And it worked. It worked because it was the right amount of time. It was before the internet. It was like paper and fax machines and dial up and someone gave me a radio show to go on the internet.

[00:39:32] Matthew Zachary: So I had the first podcast in the country. that talked about healthcare or cancer in May of oh seven. So all these things, just, again, alchemy was the magic word here. It just became a thing. But the whole point was we don't know what we need. We need to be a voice first. So it did all the things no one else was doing right now.

[00:39:53] Matthew Zachary: and to your point, yes, this was what I didn't know I could channel my purpose to do. [00:40:00] And when you are a histrionic, comedic, entertaining musician, artist, creative with no Fs to give, I'll be kind on your show here, why not try it? And it worked so well and it just gave birth to such a national momentum of hundreds of thousands, if not millions of voices that were demanding equity for generational outcomes.

[00:40:32] Matthew Zachary: This was a age relevancy first. So we were basically the populist arm of the academic nerds. So we brought all that energy into the culture and it maybe had to force a little bit. We recognized from, outcomes and, and what are the jargon terms, um, evidence-based standards of care and guidelines and best practices and all that nerdy inner jargony crap that [00:41:00] mattered.

[00:41:00] Matthew Zachary: and it worked. It so worked. It was phenomenal. It was great. It was a heyday. We had road trips and trade shows and bootcamps and bar nights and camp retreats, and it was the wild west of awesome. And, I'm so proud of that. And the boat wake can, I mean, I left almost six years ago, but the boat wake, it's still there.

[00:41:20] Matthew Zachary: It still matters. It's now serving the Gen Zs. It's got a different flavor, culture's different now, but it was a lightning rotten in its moment and it will last. it has stood the test of time and I'm so proud of the legacy 

[00:41:34] G van Londen: if I do the math correctly, 19 years, right?

[00:41:37] Matthew Zachary: Yeah. It'll be 19 years this January that I founded it. 

[00:41:40] G van Londen: Wow. 

[00:41:42] Matthew Zachary: It's one of the longest standing new age nonprofits. Like not Leukemia Lymphoma Society, not Cancer Care. The ones that were started in like the sixties, it was one of the first true new organizations from the early two thousands that's still here.


[00:41:58]  We The Patients: Matt's hopes and dreams for the next 5-10 years
---

[00:41:58] G van Londen: You're a [00:42:00] pioneer. You've created a huge following. You have a voice that matters. So I guess my question is, if you look at yourself over the next five to 10 years. What are your hopes and dreams for you to be able to use your voice to accomplish? Or is that too much of a philosophical 

[00:42:24] Matthew Zachary: Oh, no, we'll be on philosophical, right, Brad?

[00:42:26] G van Londen: Yeah. 

[00:42:27] Brad Buchanan: I think, I think we're, we're up in the stratosphere of spiritual cosmic and so forth, so 

[00:42:33] Matthew Zachary: yes. 

[00:42:33] Brad Buchanan: Go for it. Matt. 

[00:42:35] Matthew Zachary: Starting in 2026, I spent the last year in stealth mode incubating something the country desperately needs that is agnostic of politics, agnostic of the administration.

[00:42:48] Matthew Zachary: What would a true cancer patient's rights voter block look like? And how has this never happened before in our country? And if [00:43:00] you look at just 20 million alone, 20 million voters are the cancer block. What do we want? What does it exist? How does it work? What could electioneering be? What bills do we wanna put out there?

[00:43:17] Matthew Zachary: What laws exist that we want to challenge? How do we start to discuss this as a lobby group to our elected officials over the next 10 years? This is all fermenting in my brain. Like why has, there's the NRA, there's AARP, there's Veterans Affairs,there's Planned Parenthood. Why can't there be the cancer lobby?

[00:43:35] Matthew Zachary: But what does the cancer lobby want? What's the first question? You can be angry at all you want. It's what do you want? And then how do you apply that national pressure at the district level? And I'm, I don't swim in these waters, so I found the right people to talk to. So starting hard, hard, hard push in January, soft push in November, wethepatients.org [00:44:00] is America's first cancer patients rights movement.

[00:44:02] Matthew Zachary: We are organizing 19 million Americans minimum. Into the largest voter block that's demanding X. And what we're demanding is not to fix anything. We're demanding to be protected from everything. So the policy group, which is just getting started now, is toying with the idea of a, a Miranda right for all cancer patients to receive a third party steward, a steward on the day you're diagnosed, if you qualify, if you need it, that is reimbursed by Medicare. Basically, it's, a level above a navigator. It's a third party assigned employee of we the patients whose job is bifurcated to fight insurance for you and defend your financial protections.

[00:44:53] Matthew Zachary: And then everything's downstream from there. So basically inventing a brand new upstream professional class of arbiter. [00:45:00] That steps in based on qualifications at the state level and eventually reimbursed that passes you down to a navigator in clinic Rural or, or, or whatever. Uh, so we're like the TSA, we screen you first to protect you third party from Financial Ruin and run around, and it's called the Cancer Patient Protection Act.

[00:45:23] Matthew Zachary: And we're gonna introduce it in 28. it's a state-based initiative, but it also turns every cancer patient, every cancer organization, every oncologist, every professional into the lobby at the state level when there are other things going on that we want to exert for on. And a great example, and this was yesterday, you'll appreciate this.

[00:45:42] Matthew Zachary: You will so appreciate this, doctor. Cold caps for Women passed in New York State for the first time in the country. It's covered. And I met the senator yesterday who [00:46:00] got that passed through the house and through the governor. New York state is now the first state in the country that guarantees access to cold caps for any woman that wants it.

[00:46:09] Matthew Zachary: So here's where we the patients comes in now. We can now exert force in other states that they follow New York. There's never been a lobby to do that. That is the power that we, the patients will be bringing to America. And that is my next 10 years. 

[00:46:26] G van Londen: Uh, that is a very, very noble and very, very large undertaking.

[00:46:32] G van Londen: Are you going to get help? Are you, how can you do this on your own? 

[00:46:38] Matthew Zachary: Oh no, I'm not on my own anymore. We are raising a shit ton of money. We are putting together a intense corporate council, paid membership corporate council. we are launching a venture capital campaign. 

[00:46:51] G van Londen: Wow. 

[00:46:53] Matthew Zachary: We have a 5 0 1 C3, fiduciary arm for philanthropy.[00:47:00] 

[00:47:00] Brad Buchanan: Yeah. when Matt first, told me about we the patients, I was like, this guy is dreaming in technicolor. and yet the more I learn about him and his, career, his story, the more I realized, well, actually he's just the guy who can do this. so I admire everything about what this initiative is for, and, it should not be a partisan debate, right?

[00:47:25] Brad Buchanan: Because Democrats get cancer, Republicans get cancer, independents get cancer. We, you know, we're human beings. 

[00:47:32] Matthew Zachary: Yeah. 

[00:47:32] Brad Buchanan: and that type of initiative, I think might be one way to address the coming medical catastrophe that this country is headed for in a lot of different, cases, with the anti-vax movements arising and, just general dysfunction at the federal level.

[00:47:56] Brad Buchanan: But if we can get things done at the state level the [00:48:00] way you're proposing with a few, bell weather states like New York and, I hope California would join that, crew. And please let me know if I can lobby anyone in Sacramento. Matthew, I live about a five minute, drive from the Capitol building.

[00:48:15] Brad Buchanan: I think this is in the face of the current administration's abdication of any authority whatsoever to talk about health matters. I think this is the kind of grassroots political initiative that should work if anything can work. 

[00:48:31] Matthew Zachary: Yeah. So, I mean, this is all yesterday.

[00:48:35] Matthew Zachary: Everything officially started yesterday, but we haven't done anything yet. the two things that mattered most was we needed to get trademarks in first, which we've done very happy. We have trademarked the hell with the patients, and we have the.org domain finally. So our email's up and running the website, we the patients.org is up and running.

[00:48:57] Matthew Zachary: Our intake form is up and running [00:49:00] a couple more boxes to tick, and then it's more, we gotta raise X amount of money by the end of the year to do the right amount of noise in January.


[00:49:07] Conclusion
---

[00:49:07] G van Londen: Matt's, I'm looking at the time. and I think I'm going to say two things to close things off. one is you're playing music. But in a different way. I can see you being enlightened and using all the different buttons on a whole different level to make beautiful music. And I can't wait to see which kind of beautiful symphony you're going to create for us.

[00:49:35] G van Londen: And as Brad said, I would love to hear more. We would love to have you come back on. And similarly, if I can help in anyway from my chair at home, you let me know, okay? Because, I want to help this great cause you're onto something and I know you know that that's why you're on fire. You're a very special human being [00:50:00] and, I wish I was close to you so I could give you a big hug.

[00:50:04] Matthew Zachary: The feeling is mutual. 

[00:50:06] G van Londen: Thank you. Matt. Is there anything either of you would like to say before we enter recording? Brad or Matt? 

[00:50:14] Matthew Zachary: I would just remind people that history's a teacher. We lose sight of perspective. it doesn't make anything terribly better to have perspective, but it's good to have it in general to realize that anything is possible.

[00:50:28] Matthew Zachary: the moral arc of the universe does bend toward justice and advocacy is really the only thing that's ever mattered, because if it didn't exist, there'd be nothing.

[00:50:39] G van Londen: Thank you, Matt. 

[00:50:42] Brad Buchanan: Yeah, I mean, I would just say amen to, to what Matt just said, and, and I wanna be respectful of his time and yours, Josie. but I, yeah, thank you Matt, for coming on and telling us your story, first of all, which was incredibly inspiring just on its own. [00:51:00] Then the vision that you have for the future.

[00:51:03] Brad Buchanan: I love Josie's analogy of making music. Matt is the composer. He's now also the conductor. Mm-hmm. And I think he's playing a few amazing arpeggios, uh, 

[00:51:14] Matthew Zachary: right. I, I'm Arpeggiating again, 

[00:51:16] Brad Buchanan: Finally Arpeggiating again. And, that's, that's just the, you know, a really wonderful, image to, to capture what he's up to.

[00:51:25] Brad Buchanan: And, yeah. I, I just applaud him. And, I, Matt, thank you for, for coming on and talking to us. 

[00:51:31] Matthew Zachary: This has been an honor. I appreciate it. 


Head Shot

Josie

Host
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Brad Buchanan, PhD, MA

Co-host
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Matthew Zachary

Guest