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Simple truth from Matthew Zachary of Stupid Cancer – know your rights and your choices in the quest to crush cancer. Matthew is a true inspiration, with stupid cancer empowering young adults to deal with cancer on their terms! Here is what we cover in this conversation:
- The invincibility bubble (AKA your life before cancer)
- How knowing your rights and choices can safeguard your future after cancer
- Dealing with scanxiety
- Stick with what you love during cancer
- Safeguarding your future as a young adult facing cancer
- Your lifeline during cancer and beyond
- The community behind Stupid Cancer
- and much, much more!
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Full Transcript
Joe: Hey, Matthew, listen, first off, I want to start with, what was life like before cancer? I know this was a long time ago, so you have to dig up in that memory. What was it like, man?
Matthew: Fabulous and cancer-free. You were invincible. You could do anything you wanted, there were no obstacles ahead of you, blue skies, only optimism. That’s a good thing. You’re supposed to have all of that when you’re 16/17/18/19/20. You need that invincibility to want to take on the world. That was my life.
Joe: Yes, it’s such a fantastic point you bring up, invincibility. You know what, now that I think about it, it really was like that because nothing could happen, you were almost living in this bubble.
Matthew: It’s a good bubble.
Joe: It’s a good bubble, yes.
Matthew: There are bad bubbles, but it was a good kind of bubble.
Joe: Yes, absolutely. Then you find out, they tell you you’ve got six months to live. What was that like?
Matthew: Yes, the last thing on your mind is getting sick when you’re young, let alone getting devastatingly sick when you’re young. It was, to say, surreal is an understatement. It was just denial. It wasn’t possible that this could happen to someone like me, at my age. It’s not exceptional for someone to think that way in general, but when you’re just a kid and you get sick and they say you probably won’t be here in six months, how do you process that? It’s just denial. You’re in absolute consistent denial.
Joe: Did you come out of that somehow?
Matthew: You never really come out of it. I guess just by not dying it helped the narrative that I wasn’t dying and then you keep on hoping that you don’t die. Then eventually time moves on and you figure out that you need to live instead of worrying about dying. That’s the transformation.
Joe: Yes, exactly. Do you know what, Matthew, I don’t know about you, but I have so much advice to share with the old me who went through what was I was going through, through cancer and going through treatment, because I really had no clue what was going on. If you had a chance to do something differently, if you could sit down with your old-self, what would you tell him in retrospect to just make it easier for yourself?
Matthew: One of the most important things to me these days is to guarantee if you’re sick, you know your rights and you know your choices. I would go back to myself 22 years ago and give that version of me his rights and his choices. All the things you should be told right now, that you’re not going to find out anyway. Being able to guarantee that someone diagnosed today is made aware of their rights and choices is the most important thing because you don’t know what you don’t know, your life is in jeopardy. In my case, I was facing chemotherapy that would have put permanent nerve damage in my fingers and toes.
At the time, I was an aspiring concert pianist and I couldn’t play because of the tumour, but if I had any chance of living, I’d rather be able to rehabilitate myself and play again, versus going on a chemotherapy that would have given me this devastating side-effect. If I had lived five years and died but being able to play piano, that was more important than living 80 years and not being able to play the piano. I was not made aware of that choice, except that I had an uncle who was a geneticist that nudged into my decision-making and helped me make a better choice that was better for me.
Not everyone has a miracle uncle who knows these things that swoop in and tell you these things. If I had to go back and tell myself, I would have told myself what my uncle told me, to just don’t do this, you’re going to be fine. As long as you make a decision that’s the best for you.
Joe: Yes, you’re so spot on. There are so many things that you have to take into account. I was lucky because I was told that if you go this chemotherapy way, it might affect you playing your guitar and if you go this way, it might affect your fertility. You have to know these things otherwise you’re screwed, right?
Matthew: It just comes down to choice and it’s hard. 22 years ago, there was no internet. I had nothing to look through. Today, there is way too much internet, so you don’t quite know what to trust. We’ve come 360 degrees back to the same confusion out there. Whether there’s nothing to know about or too much to know about, it just comes down to who is going to help you figure that out.
Joe: Yes, absolutely. One the other side of it, in terms of people who help you through it, friends and family, a lot of folks I go to, they have people who disappear from their life for one reason or another throughout this whole cancer thing. What was that whole experience like for you?
Matthew: Any one part specifically then, or just in general?
Joe: Yes, just in general, friends and family who maybe you expected to be there, and it didn’t work out that way.
Matthew: My personal experience may not be that of other people, but I’ve heard that this is not uncommon what happened to me. People go either this way or that way, they never go right towards you or right behind you. They’re either full on, I’m here to help, whatever you want, whatever you need. My parents did that, my brother did that, my family did that. My college friends, my high school friends, some of them just bailed. Can’t deal with it, I’ve got to move on. I’m going to grad school. Living their life, sorry, man. That was painful.
That they just summarily rejected me. I was too much of a burden for them to be sick and complaining all the time. I didn’t really focus on that. I focused on the people who came to the hospital and spent every waking hour talking about me and talking to me and sending cards and flowers. Again, I didn’t know what to expected. I didn’t wake up saying, “I can’t wake to get cancer to see what my friends do.” I just rolled with the punches, like, fine, you don’t want to talk to me, I’ll talk to these people now because they’re the ones that care about me. I guess it was unexpected that the ones that did flee were the ones that fled, because some of them were the least likely I would have thought to be behave that way.
Joe: Yes, it’s interesting. I guess, for me, like you said, also, when I was going through the experience, I was in the zone, but I guess after cancer, I looked at it and I went, these three close friends I had, they just disappeared completely, and I was trying to rationalise it because it didn’t make sense. Why did it happen? Do you know what? I still don’t have a good reason.
Matthew: Yes, what are you going to do? You’ve got to cut your losses when you. It’s going to hurt, you didn’t expect it to hurt because you weren’t expecting it to even be there in the first place. It is my hope that people who get sick have lifelines and have handrails and guardrails and support. Some don’t, some do. It’s regrettable but sometimes you’ve just got to go it alone.
Joe: Yes, that’s it, man. The other thing that all of us go through is having the fear of cancer coming back, especially as you get closer to every check-up, you start thinking about it. How do you deal with it? What sort of advice do you have for someone who maybe is going through it right now?
Matthew: Yes, we call that, “Scanxiety.”
Joe: That’s a nice word.
Matthew: I didn’t make that up. That was told to me. Scanxiety is the never-ending fear that it’s going to come back in some way, shape, or form. Or for those people even living with it, that it will get worse than it would get better. Metastatic cancer is a really big deal in what we do here at Stupid Cancer. I like to use the expression: Step into the pain. I got that from a friend of mine and I’m not really original, I just recirculate. Stepping into it, owning it, it’s going to happen, you cannot control the outcome of what’s going to happen. As difficult as it sounds to just do that, what choice do you have? You either worry about it and panic and get into a disorderly array of stress, or you just say, “This is going to happen, and I will deal with it when I get an answer.”
Joe: Yes, that’s a great way to look at it. That it’s separating what you can control from what you can’t control.
Matthew: There are multiple kinds of Scanxiety too. I’m now 22 years now from brain cancer and I still get headaches and my brain is like, “Is that cancer again?” Probably not but it’s still there, the trigger never goes away. It’s been owning the trigger. Yes, time makes that a whole lot better. I’m not saying that if you’re a year out, it’s the same as being 20 years out. It just really is a perspective on how things you can control, things you can’t control, and just owning the unknown.
Joe: Yes, exactly. Matthew, I wanted to ask you about that, as well. Like, doing this podcast and doing my writing and all of that sort of stuff, it really helps me to find a new meaning, almost like an additional meaning of things that I do with my life that really take me away from what you call Scanxiety, is really being able to focus on something bigger, something positive, something that is the way that it is bigger than myself, because that helps me put cancer in its place. To stop worrying about it and worrying about it coming back. Do you have the same thing with what you’re doing with similar things, to what you’re going through with Stupid Cancer? Just things that you do?
Matthew: I think it’s important for people to find an anchor in their life that helps ground them. That was a really bad metaphor, but my whole point is that if you have a hobby, a friend, you like to write, take pictures, don’t let that fade away in the face of your challenges. I happen to be a concert pianist, I was sick, I couldn’t play, but I was able to just sick down every day for an hour and just do anything. My fine motor coordination wasn’t working but I could still play a little bit. That was all I needed to stay grounded. I know today in social media, there are plenty of blogs and people journal, and there’s so much more people can do these days than you could back then.
Express yourself, share your story, those are not monotonous platitudes to talk about. Those are authentic ways to do that. At Stupid Cancer, we advocate for people to express themselves, share their stories, talk about what they’re going through, connect with their community, meet people like them in their isolation and take ownership of the fact that they’re a part of a huge family of people that care about them and won’t judge them.
Joe: Yes, not being judged, that’s fantastic, man. Both times, you went through a few name changes, how did that come about and what were those changes like?
Matthew: I believe in something called the minimally viable product, which is when you don’t know how the crowd is going to respond to you, but you let the crowd determine your path. The best thing I tend to you is, many people might remember that FedEx used to be called Federal Express. People just started calling it FedEx for short because we’re lazy, so they legally changed their name from Federal Express to FedEx. Now we don’t give it a second thought. Following the crowd, letting the crowd carve the river for you to flow through. I had an idea for a couple of things when it started.
It worked really well but at the same time, the crowd decided that Stupid Cancer was what we were going to be known by, known as, and known for. After all the weird names we went through in the beginning, which held historical credibility. In the wash, the community decided what we were going to be. That has been the best learning curve ever in growing a business.
Joe: Well, that’s really amazing. What are the people telling you today? What are they saying? What is the direction that you think it’s going to go to now?
Matthew: We’ve spent the last 11 years yelling and screaming that young adults are treated unfairly, that we’re invisible in the cancer spectrum, that we are largely ignored in clinical trials, the statistics and mental health and psychosocial information, the patient navigation and doctor physician relationships, early detections, survivorship, metastatic. All the things that exist for the bulk of people who have cancer, over 50, do not exist at all in any related age-relevant manifest or the Gen X/Gen Y/Gen Z communities.
Which are millions of Americans. I’m not dismissing the finite nature of how small the population is, but we’re talking about millions of people. After yelling for 11 years, the world is finally listening. What is it that they want us to tell them? The community wants equity, equality, parody, justice, dignity, that we are all treated age-appropriately, we’re given the same access, the same rights, the same age-appropriate care, and incentive on what makes young adult cancer difference. We’re not 80, we don’t care about our summer homes and Medicaid. We don’t care about out bottles and our toys but dismissing the value of there being different age groups, we’re not better or worse, we’re different.
Those differences need to be part of medical care and part of models of care. That’s what we’re waiting for. That’s what the crowd is telling us. To get some policies in place, to get fertility preservation mandated, get age-appropriate mental health care in place, help me navigate how to talk to my children, how do I start dating again? What do I do with my career? My insurance is terrible. Things that are pretty crappy when you’re well are just made worse when you’re sick and even then, it’s not being managed appropriately to help a 22-year-old get through cancer on their terms.
Joe: Yes, exactly. I’m going through IVF process right now with my wife. It’s interesting because chemotherapy has kindly killed off the cancer, but it’s also killed off most of my sperm. It’s an interesting and pretty stressful process. I guess like a lot of young adults, that’s something that you may not necessarily even consider when you’re going through treatment, right?
Matthew: Well, the narrative over the last 11 years is: Well, why young adults? Why are you so special? It’s like, we’re not special, we’re different, which is what I said before. How are you different? Do I really need to tell this to you? We start with fertility, when you’re six or sixty, that’s not an issue. Your right to be a mom or dad one day is infringed upon when you get cancer. It is up to the doctors to tell you, you should bank your sperm, freeze your eggs and here’s a way to do it that’s relatively inexpensive.
Or, hey, your insurance covers this, you should do this right now if there’s time. The fact that that conversation doesn’t really happen that often is part of the frustration that drives the narrative of young-adult cancer. It frustrates me. If you were to tell me that your doctor didn’t have you bank your sperm before your treatment started, that would infuriate. If that is true, allow me to be infuriated because that’s a liberty that you have to know about. Going back to choice, if you are not made aware of that choice, plus your doctor didn’t tell you that, and you didn’t have a peer to talk to, to say, “Hey, you should tell your doctor about this.”
Then who is going to help you make that choice? Who is going to make you aware of things that you could never be aware of before? IVF, I have kids, they’re IVF babies. It costs and arm and a leg, should you really have to pay that much money to be a dad? No. That’s what makes this different. That’s what makes this relevant and important.
Joe: Yes, exactly, that’s such a great point. I really want to hit on something that you really keep on bringing up over and over again, is choice. It’s having the choice to do something. You know what, like I think I’m probably speaking for everything who has gone through cancer, you really a lot of the times you feel powerless, you feel like you’re not in control, you don’t really have choice, not only about treatment, but choice over appointment time. You don’t have choice about the specialist. You actually do but you don’t realise it, right?
Matthew: A lot of times, probably too often, you’re at the mercy of what you’ve got. You’re at a point of insanity and panic and everything is all fuzzy. Where it’s hard to make objective decisions. If you’re terrified and you want a second opinion, you might be scared to get a second opinion because it could be worse. You’re stuck with what you’ve got. It always helps to have a helping hand in the form of a peer or a community that has been there. Whether you’re at a major cancer centre or in the middle of a community with 50 patients and 3 doctors, your right to have a community, peers like you to help you fill in those blanks and those gaps is even more important.
The social aspect of going through cancer is just as relevant as the medical aspect of going through cancer. If you had been introduced to other young adults with cancer when you were diagnosed, we would have probably told you, the collective we would have said, “Hey talk to your doctor about getting your sperm banked because they’re probably not going to tell you about that. Or you might be lucky to be told that.” You’ve got to think, what is in the mind of that doctor?
Man or woman, or carer, where it doesn’t occur to them that you’re in your fertile years and they know chemotherapy can create infertility, that is a known medical data point for 30 years. I keep coming back to fertility because it’s so tangible. It’s something that’s so tangible, it’s tactile, it’s infuriating and it’s the most relevant conversation that defines young adult cancer.
Joe: So true, Matthew. All the amazing work that you put into Stupid Cancer, all those years. I think you said at one point, I read about it, that after all of these years, you became an overnight success. What made the difference?
Matthew: It’s like, I never heard of you. Yes, we’re the 11-year-old company that just made it big yesterday. That’s really ridiculous, but I don’t care about that, as long as you know about us, whenever you know about us, that’s great. We’ll drink the cool-aid and we’ll move on. I think the ongoing confounding aspect of running a non-profit organisation is endless challenges and growing and scaling. The need is never over. You can’t reach 72,000 people every year the day they’re diagnosed. It’s improbable.
The frustration is, how can we do a better job getting the word out through our existing survivor community, programs like these will enlighten people to know that we’re an organisation that is in a very unique space right now. Coupled with the challenge that we’re few and far between. You know, you go to Iowa community cancer centre, no offense to Iowa, there are not going to be a lot of young people there. If you go to Sloan Kettering and B. Anderson, you have the privilege of being able to go there. Yes, they’ll probably put you in a bed in a ward with other young people out there because they know that’s important, but just finding out that you have a community is the most important thing for me for us to represent and stand for.
You need that handrail. I talked about how when you want to buy a car, you research a car, you test-drive a car, you read magazines and other people’s reviews of cars. No one hopes to go on some pharma drug one day, you don’t test pharma drugs just to see which one you’re going to get prescribed when you get cancer. You’re entering almost a marketplace what you’ve never researched. Who is going to be your Yelp? Who’s going to be your Trip Advisor? That doesn’t exist right now.
I think the role of every patient advocacy group in cancer is to try to play part of that role. If we can be Yelp and you can be Trip Advisor and you can be Trivago and you can be Good Eats or whatever, yes, we are all trying to be that lifeline, that handrail.
Joe: Yes, exactly. The lifeline to a person whose life has been turned upside down.
Matthew: Yes.
Joe: Thank you so much, Matthew.
Matthew: My pleasure. My honour. Good luck with everything.
Joe: Thank you.