Finding My Purpose After a Rare Brain Tumor | Cancer Friends
Featuring Matthew Zachary
Hosted by Andrew and Esther Schorr, “Cancer Friends” highlights stories and lessons from cancer survivors and their support system. Find other “Cancer Friends” episodes on our video channel here!
The segment features Matthew, who was a 21-year-old college student and pianist when he started losing fine motor skills in his left hand. As his symptoms progressed, doctors discovered the reason why: an extremely rare brain tumor.
Matthew discusses the founding and growth of Stupid Cancer, a nonprofit that focuses on adolescent and young adult (AYA) cancer research and resources.
He also shares his experience of being a self-proclaimed provocateur in the cancer world, turning anger into action, and looking toward the future of preventing cancer.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
We deserve better. We want to live a little more. And why should we be treated differently?
Matthew Zachary
Introduction to Matthew
Andrew Schorr, The Patient Story: Hello, it’s Andrew Schorr and Esther Schorr again, back with “Cancer Friends,” our series. We want to introduce you to someone who’s been a friend in Cancer Land for a long time, Matthew Zachary, who joins us from New York City. Hi, Matthew.
Matthew Zachary: Hello. How are you?
Esther Schorr, The Patient Story: Great to see you.
Andrew, TPS: We’re doing good. Matthew, at age 21, [was] a college student in upstate New York, and really working full time as a music student on the piano. [He] had a problem he’ll describe that ended up being a brain tumor.
It ended up transforming him in really helping thousands and thousands of people who have been or are even now young adults with cancer. We want to take you through what happened with Matthew and how it’s made a difference to so many people and what you do today.
1st symptoms
Andrew, TPS: So, Matthew, let’s go back to when you were 21. What happened?
Matthew: Well, let’s go for the history lesson, shall we? This is an exercise in anthropology. I was classically trained from the age of 11. So 10 years later, I’m a college senior composing for film, television, orchestra, jazz band, whatever it was. I wanted to go to grad school.
I wanted to be a film composer, and that was the plan, the job, the goal. Rarely does someone that young know what they want to be for the rest of their life, but that was kind of my fortune at the time.
During summer break, everything was fine. [I] got back to school, and I immediately noticed — maybe this is just unique to being a pianist — that the fine motor coordination of my left hand wasn’t as great as I remember it to be.
I couldn’t run my fingers up the keyboard as quickly as I remember, and yet my right hand was perfectly fine the way I remember. You’re young, dumb, stupid, 21. I’m like, “Oh, that’s weird. Whatever,” and that was kind of what happened.
Over the course of the fall semester at Binghamton, it worsened to the point where — I’m a lefty — I couldn’t grip a pen and write. I could barely type with my left hand, like touch type. I was just poking like we do these days. I’m like, “Oh, that’s still weird.”
Seeing campus doctors
Matthew: I kept going to the doctors on campus, and they’re like, “Eh, you have carpal tunnel. Put your backpack on your other shoulder,” or, “Hmm, you might have early-onset multiple sclerosis,” or “Hmm, this could be, I don’t know, Epstein-Barr syndrome.” So this crazy litany of nonsense.
It’s hard to blame them. You don’t think brain cancer. 21-year-old, pianist, left hand doesn’t work. Ultimately, then the headaches showed up, and then they started taking me seriously. That’s really where the shit hit the fan right after Thanksgiving. That’s how I went from, “I’m great,” to, “What the hell is happening?”
Andrew, TPS: That turned out to be, in fact, a brain tumor. I know there was confusion about what kind of tumor it was and even then what to do about it. Describe a little bit of that.
Matthew: I went to my general practitioner, my pediatrician. I was 21, but I still saw my pediatrician. I came back, and I said, “I can’t do this [or] this.”
He’s like, “All right, this is a problem. Go get an MRI.” Got the MRI, and then I went to the diner for lunch afterwards, got back, and there was a beeping answering machine — if you want to Google what that was, kids.
It said, “Get back here. There’s something wrong with you.” So then I went to a neurologist, who thought I had this and this and this, and then he said, “No, you need to see a neurosurgeon.”
The neurosurgeon said, “Oh, this is probably an astrocytoma,” which is not great. It’s maybe the least worst of them. But then they finally went in there, and they took it out. On January 10, ’96, was my eight-hour surgery.
Esther, TPS: This is brain surgery.
Matthew: A big, big, gigantic old-school craniotomy, tear your head open kind of stuff, like Russian gulag brain surgery stuff. It wasn’t pretty, and you’re awake the whole time. You’re kind of pseudo awake and not awake, but it’s just not fun. It’s a little better these days.
An extremely rare type of tumor
Matthew: They took it out, the pathology came back, and I’m like, “It can’t possibly be this.”It wasn’t an astrocytoma. It was a medulloblastoma, which is unseen in people that were 21. It’s like an eight-year-old and younger [patient]. Congenital. You’re born with it. It’s called a primary neuroendocrine tumor, PNT.
They’re like, “How the hell does this 21-year-old kid have a medulloblastoma?” They didn’t believe it. I was very lucky to have my dad’s best friend, my Uncle Jay, who I talk about a lot in all my talks. [He] happened to be one of the world’s leading genomicists at the time.
He said, “Give me some chunks of this tumor. I’m going to ship them out around the world to confirm that this is what it is. And if it is, it’s impossible.” Turns out it was a version of what they thought it was. A medullo-mutant-blastoma, so to speak, that was nowhere in the history of recorded biology in brain tumors, so malignant nonetheless.
Esther, TPS: The rarest of the rare.
Matthew: Like there’s 200 medullos a year anyway, and I had the one in the whole world. I don’t know if it’s to date or not 27 years later, but that was the confusion that led to this, which added just more hedge-maze thinking on what to do with me because it was finally out of my head, but now what?
Undergoing radiation treatment
Andrew, TPS: The “what” became more than 30 radiation treatments.
Matthew: We’ve been working in this industry for a very long time, so it’s easy to lose sight of what it’s like to just be walking in the door for the first time. My dad was 46. I’m 48 now, so I can’t even comprehend what it’s like to have a 21-year-old son who might be dead in six months.
[We thought] who do we talk to that even understands what this is? We landed on Dr. Jeffrey Allen, who is one of the leading pediatric neuro-oncologists in the world, at NYU.
He did his best to come up with the calculus of what might work, but they convened a tumor board to really figure out what should we do with Matt?
Normally, a tumor board is comprised of leading collaborative medical professionals that kind of drop their egos at the door and decide what’s best for the patient and come back with recommendations.
That’s what’s called a tumor board. What does my tumor board do? “We got no idea. Good luck. Go forth. Go do.” We settled — and I say settle because what did we know we were doing; we’re rolling the dice on these things — with 33 cranio-spinal treatments of, I don’t know, Chernobyl radiation, basically, down to my sacrum.
Then they had this thing I think we take for granted today, which is a good problem to have. Today, it’s like a proton beam therapy or toma therapy, but 27 years ago it was called stereotactic radiosurgery.
There was this 3D thing they were just inventing where they could target only where the tumor is and no surrounding tissue. That’s how it works today. You’re welcome, kids, that I was your guinea pig. That’s what we settled on: 33 of those from February 15th to March 30th with the weekends off.
Andrew, TPS: How’d you do with that? How debilitating was it?
Matthew: It nearly killed me. But also, this was 1996, and there were no antiemetics, and there were no quality-of-life medications. You’re just burned and in pain, and you can’t eat. [You’re] throwing up 50 times a day.
Esther, TPS: And you’re young.
Matthew: My immune system was there, but if I were maybe 80 or 90, I probably wouldn’t have done so well. I had an incalculable number of side effects that all kind of came in waves and lasted to this day, 27 years later. No one’s out of the woods. The gift that keeps on giving.
I like to say that I lost my life, but I didn’t die.
But it was tragic. I kind of tell the story like it’s someone else’s story. It’s so far away from me, but I was treated like a piece of meat. I wasn’t a human. I was just like a lab rat being experimented on. That’s how I felt.
Feeling like the only young adult with cancer
Andrew, TPS: Something happened as you recovered from that. You go to a cancer clinic, and most of the people there have gray hair like me. Hardly anybody is your age. Something happened to you to say, “I want to do something about this.”
Matthew: I have the worst of both worlds. When I was going to any support groups or any conferences, it was all geriatrics. When I was seeing my doctor and at the hospital, getting radiation, [it] was all pediatrics.
There was no one on any spectrum that was remotely my age, so I couldn’t relate to anyone or anything. I didn’t realize that it was possible there could be someone like me to look for, so I never just asked, “Where are the people that are like me?” I never asked that question because it didn’t even occur to me it was possible to ask that question.
Stupid Cancer
Esther, TPS: How did you get from there to what we already know happened, which is … you created a community of people like yourself.
Matthew: I feel like I’m a bit of a Forrest Gump. I just happened to bump into people along the way who happen to be these people, you included. I just found myself in the right place at the right time too many times.
Then I wound up being able to rehabilitate myself and play piano again, but I didn’t get to go to grad school. I took a full-time job working in the agency world. Ironically, the healthcare agency, unbeknownst to me. I was working where I wound up being.
I just started finally reclaiming the fact that I could compose and perform again. But I would probably never be a film composer. I was too sick. It took me years to even just be able to eat any food I wanted. I like to say that I lost my life, but I didn’t die, thanks to radiation.
I declined chemo. That’s a whole other story. Turning down chemo in the ‘90s was like anathema, how dare you? But the whole point was, I was so focused on what was important to me, and my parents supported that.
Along the way, I happened to get in touch with someone at my office who was doing a Relay for Life. Like, what the hell is that? All right, I’ll go to this thing. Of course, everyone’s my age, but they’re raising money. They’re not the patients there.
What wound up really happening that transformed all of this — if I had to euphemistically trace the cord back to the outlet. I decided to write some music, to go into a studio, and record like 50 songs that I had written between ’94 and ’98. Before, during, and after cancer.
I went out west. My friend had a studio. I tracked 51 songs in two days. He produced these CD’s for me. Back then you could self-produce them, make your own artwork. They’ll burn them for you. You pick them up in packs of 50. They’re pre-plastic-ed. Everything’s there.
I just did that. As a lark, but I did it, in a way so I could give them to my doctors to thank them. But one of the doctors I gave it to, there was a sales rep from some company [who] showed up there.
The story goes: “Oh, what’s that?”
“That’s Matt, one of our patients. He was a teen adult” — whatever they called me back then — “pianist who was a brain cancer [patient] but plays again now.” “I’ll take this back. I’ll see what they can do.”
That got me some strange video news release, I think for Roche at the time. I didn’t know what I was doing. I had a story. It was just me. A gentleman saw that piece and found me on a Columbia listserv for brain tumors that I happened to find.
If there was any one person on this earth I could have met who would have been the default supernova to accelerate me into this rabbit hole, it was Craig Lustig. I went from not even knowing there was someone like me to meeting my doppelganger: a bald, Jewish, New York City-based, 20-something brain tumor survivor who went to Binghamton and was in my a cappella group.
Again, this was like 2000, ’01, ’02. And then the rest is history. Craig took me down this rabbit hole. He said, “You should be a cancer advocate.” To which I responded, “The hell is a cancer advocate?” And there we go.
Growth of Stupid Cancer
Andrew, TPS: [What happened] was a regular internet radio show, really attracting other young people around the world probably, and forming an organization eventually like a convention, if you want to call that, of people like that in Las Vegas. It mushroomed. Just describe that. It took off.
Esther, TPS: Also, talk about the confluence of timing here because now the internet’s around, right?
Matthew: I leaned on my advertising industry background [and] my creative background. I’m a brand guy. I like to build brands [because] I understand how to communicate with customers and consumers. Also, I understand how to get you to buy stuff and what logos look like and all the nerdy stuff that happens in the agencies. I had that skill.
What I realized out of the depths of the alliance was there really were no agency creatives in that space. I didn’t really want to do policy work. I wasn’t an academic.
You can be angry about why this happened to you, but don’t ask why. Ask, now that it has happened to you, what can you do … to make it less horrible for the next person that shows up.
I didn’t really want to start a charity; I just wanted to figure out where I belong. The trigger to start Stupid Cancer was I finally found people like me.
That was the spark that got the organization started. It had to be a charity. I didn’t know anything else about it. But you’re right. I did it on purpose. It was intentional. It was meant to — back at the time, shock value wasn’t a thing before the internet because you didn’t know it existed.
I had a talk radio show. We did live events. We had bar nights outside the hospital in 50 cities around the country. I think it just spoke to people in a way, because it gave them permission to be pissed. [It was] a community of people that understood what they’re going through, and a way to get behind something they didn’t know they needed to do.
Necessity of a provocateur in cancer advocacy
Andrew, TPS: Matthew, you’ve remained what you just labeled a provocateur. Why is that needed in this field? You take joy in doing it. It’s needed. How come?
Matthew: I’m not alone. There’s only a handful of people like me who are willing to.
Someone’s got to poke the stick. Someone’s got to poke the bear. Someone has to be willing to call out bullshit where bullshit is due to be called out without throwing too many people under the bus at the same time.
I’m an entertainer. If you ask me who I am, I’m an entertainer. All I want to do is get on stage, play piano, and talk to people. That’s the core of who I am.
But I take that entertainment and I am able to bring into what I want to talk about, the inanities, in a way that normal people understand.
That isn’t multi-syllable jargony, jargony fridge-magnet bingo, because that’s the way healthcare works, and we don’t speak human.
If someone doesn’t speak up on behalf of the little man or garner the respect of the American voters or give consumers and patients and caregivers a way to mess back against the system built by design to not help them. You can’t do that in a flaccid, placid demeanor.
Turning anger into action
Esther, TPS: Really, it rings very true that sometimes you have to just get angry enough to take action. What it sounds like to me was there’s anger and grief initially about being alone. Who is everybody? Where are the people that are like me?
And then once you started finding people like you, there is the motivation to do something about it, to bring them together, [and]to take action. And that seems like what you’ve done in a lot of the things that you’ve pursued.
Matthew: A good example of what I did in 2007, the language coming out of the NCI, the NIH, the CDC, COG — all these acronyms that we can Google — was that something like survival health outcomes in adolescents [and] young adults were not increasing at par with longitudinal data against pediatric and older adults.
What that meant was, if you’re Gen Xer, you’re going to die way more than if you’re not. And I could say it that way, and people understood it when I said it that way, and that no one cares about young adult cancer except young adults with cancer. I was able to just make it that straightforward.
Now we look at what ACA accomplished with all of its flaws. That was meritable from the young adult cancer movement. The long-term ped movement. ACA, the pre-existing condition, up to 26. Those two things were driven by people like me and hundreds of thousands of us that rallied around one idea.
We deserve better. We want to live a little more. And why should we be treated differently? Why should we be cared for differently? Why should there not be standards and protocols for our age relevancy, just like everyone else? If you don’t give people a channel for that anger, you’re just going to stay angry.
Shift in research for young adults
Esther, TPS: I have one other question. From a practical standpoint, Matt, have you seen over these years of raising hell that the protocols have changed, that there’s research that’s focused on this sort of middle between pediatric and older? Have you seen that shift?
Matthew: I wanted to see if, what is it, 12 years later, we’d done anything that they wanted us to do. And we did all of it.
It’s because we forced policies, we forced standards of care, we forced young adult cancer, age-appropriate relevancies, we forced fertility mandates, [and] we forced the ACA.
Survival rates are higher proportionately to which cancers have better treatments these days, which is another conversation. Back then there were three things. Now there’s 40,000 things.
It’s less about how old you are and more what’s wrong with your genetics, which is even better because it’s not age. It’s not a derivative of how old you are.
The answer is yes, I think we did a good job.
Not knowing what information to look for
Andrew, TPS: As we have young adults or their parents as well who may be watching, what would you say to them as individuals for their kind of operating system as they go through this today?
Matthew: Well, if you’re already watching this, you know it exists. The challenge, of course, is how do you know it exists in the first place? Because healthcare is — I’ve always said it’s like a supply-only store you don’t want to shop in.
You don’t think to know things, like I didn’t know there was someone else that was 22 with cancer. I had no idea.
Today, it’s probably a little easier to find those people. You search on different platforms, and thankfully, that’s maybe a good part of what social media can do to connect you with people.
Self-advocacy
Matthew: I’m a cynic because it’s so easy to just say, “Be your own advocate.” Not everyone’s born with what I call congenital chutzpah. You don’t have that inside you. Where does the gumption come from? It might be through anger. It might be through just a disenchantment or disenfranchisement.
But most people don’t think to ask for a second opinion because … you’re scared. You don’t want to be there. You’re terrified. “Help me out. I just want to live,” is often what happens right now.
I’d like to think there’s a little more pushback from younger generations who are now more aware of the subtle nuances way beyond the biology. What’s wrong with them?
Advice for parents navigating their child’s diagnosis
Andrew, TPS: What would you say to parents of young adults or how the young adult and the parent navigate this together in a positive way?
Matthew: Honestly, voice memo app on your phone is your best friend. Record everything because you can and your kid can’t. That’s a great life hack.
Back then, my dad would scribble down on paper and translate to Word document on our Macintosh, the little gray one you toted around. Keep track of everything; record everything.
Just a life hack: there’s a website called rev.com. It transcribes your voice memos to text. You can just record every conversation you’re ever in. You can take notes to yourself on your phone and just send those audio files. It’s like $0.99 every time you do it.
We didn’t have that back then, but here’s a life hack for caregivers who may have more latitude to listen and record than their scared children, who want to get stuff done.
That’s my biggest recommendation to caregivers: take advantage of what I didn’t have 27 years ago, because your strongest tool is knowledge, and you don’t know what’s happening when you’re all Charlie Brown teacher, listening to your care team saying X, Y, and Z.
Andrew, TPS: Thank you so much. Andrew and Esther with Cancer Friends. One of our dear cancer friends, Matthew Zachary. Thank you for [reading].
