Who Are You Calling 'Inspiring'?
Hey there, just a quick warning here at the top: there’s some swearing in this episode. And also, this show mentions a sex act. So — consider yourselves warned!
<<Crowd talking; laughter>>
These are pre-wedding jitters, recorded just a couple of months ago, near Los Angeles.
Max Ritvo and Victoria Jackson-Hanen are about to be married.
Max: Love you guys.
I love you so much.
Max: I really love you guys. It means so much to me that you guys are here.
Of course.
That’s Max you’re hearing, talking to friends. I met Max at his apartment recently, and he played the tape of the ceremony for me.
<<Cheering starts>>
There’s cheering, as Max makes his entrance. And then — there’s Victoria, walking down the aisle, her mom and dad on either side of her. Her hair is long, and she’s wearing a dove gray dress. Max approaches them.
(Max): I have to thank your dad.
When Max and I met, this was the scene he wanted to point out.
Max: That’s me collecting Victoria.
Mary: That’s Victoria?
(laughter from crowd)
Max: Okay — that moment was my favorite moment in the wedding. She gets there. I put my hand on her cheek, and she leans in to kiss me.
She goes in for a kiss — the thing you’re not supposed to do until the ceremony ends. And Max has to hold her back, saying “Not yet.” Next are the vows. Victoria goes first.
Okay, I’m standing here now, looking at you, about to marry you. For years I actually couldn’t look at you in the eye… Your gaze is really intense! (laughter)
Their promises to each other are full of inside jokes, and little rituals of their life together. And then —
<<cheering>>
Max and Victoria — who met at philosophy camp eleven years ago when when they were barely teenagers — are married.
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I’m Mary Harris, and this is Only Human. A show about our best moments and our worst moments; about how our bodies work — and what happens when they don’t.
There’s one thing Max’s wedding didn’t dwell on. He has a rare cancer called Ewing sarcoma. He was first diagnosed when he was a teenager. And the outlook — it isn’t good. Max is a poet and a comedian. If you spend a little time with him, you’re guaranteed to laugh — even if he's describing the details of his terrible illness. But he’s also really honest about the position he’s in. And that’s why I wanted to talk to him. Max refers to himself as an “Inspiring Cancer Survivor.” But it’s a joke.He can’t stand words like inspiring, or inspirational.
Victoria and I banned the word “inspiration” from the wedding. Nobody was allowed to use the words inspiring or courageous at any point during the wedding. And I was very concerned about the wedding sort of becoming less about Victoria and I’s love than about a consecration of beauty in the face of death and of, you know, the radicalness of love in the face of...
I didn't want to be in the face of death – and Victoria doesn't really like thinking like that. She's a very practical, rational person. And she just thinks I’m by far the best choice. I’m the superior mate of all the people she's encountered, and she wants my babies. And doesn't want people telling her, you know, “Oh, your unconditional love is so beautiful in the face of Max's jaundiced, you know, milk white body and his tiny, skinny, wounded frame.” She’s not into that.
Max is skinny. And handsome. He has thick glasses, an angular face, and this sly, goofy smile that flashes on when he gets excited. He’s playful even when he’s talking about things that are really serious — like his initial diagnosis.
It just happened one day. I was sixteen years old I was a hyperactive kind of angsty teen.
Mary: Yeah let's talk about. Because you were just sixteen when you were diagnosed. How?
Max: How was I diagnosed?
Mary: Yeah.
Max: Um, a doctor said, “Maaaax.” No, um, so – I thought I had a yoga injury. Um, my West L.A. upbringing is showing right now. At sixteen I thought I had a yoga injury. And I had this pain in my side, and the pain was just getting worse and it wasn't getting better. And I started spiking these fevers, and the fever got higher and higher. I thought they were unrelated, I thought “Oh, you got a rupture an injury. Simultaneously, you had an infection.” And I ended up sleeping on a mattress in my mom's room, because I was worried about having something happen to me in the middle of the night. And my mom said, you know, “If the fever isn’t broken by tomorrow, we’ll get you to the hospital.”
When he got to the hospital, the doctors thought he had pneumonia. After a few tests, they were afraid it might be something worse. Max had a lot of fluid in one of his lungs. The doctors decided to take a tissue sample, but they didn’t tell Max what they suspected. So he didn’t know he might have cancer — until he came to and found himself surrounded by cancer patients.
And I wake up in the oncology ward. And I remember thinking “This is so terrible! I'm just a young, acrobatic, wiry, handsome bloke of sixteen, and it's so sad for all these old people, because they must have run out of beds and I just I have pneumonia. And they must have run out of beds elsewhere, and they're putting this, you know, virile healthy young man with a great crop of hair among all these decrepit old people with cancer. And it's so sad for them. And then you know my mother and my stepfather and my father — are trying to figure out what to do, and they look very anxious when I ask them what's going on. And they break and they tell me you know you have cancer. And I had a morphine button, and I pressed it many, many times in the hopes to just black out.
Mary: So how well equipped were you to deal with all this? You went from thinking you had a little yoga injury, to –
Max: to cancer? You want to hear something strange? One of my first thoughts was, “Well, this is going to be very good for my writing.” And at that point I still had a kind of childish invincibility. I assumed it would be really horrifying for a while. That counter-balancing it, all of my whims would be indulged. It was the communion of myself with my teenage angst. And for a little bit like up until the first chemo, I really thought like “OK, so this is just the necessary next step in my coming to terms with being a sensitive”— you know. This was going to be my coming of age story.
Mary: So how did your family handle it?
Max: You know, they were grief stricken. They’re a medical —
Mary: Did you know a prognosis at the time?
Max: They lied to me a little bit. Um … Ewing's, the cancer I had, it is very lethal and I had advanced stage Ewings. Realistically, I probably had a thirty percent chance of surviving five years.
Mary: When did they tell you?
Max: My dad just told me, “Ninety nine percent chance you're fine. Modern medicine. You're great.”
His mom and stepdad were more reticent. And his mom — was practical. She sized up Max’s situation, and realized there was a step they had to take.
Max: Cancer makes you sterile.
Mary: Right
Mary: Cancer or chemo?
Max: Chemo makes you sterile, sorry. It's all one in the same, it’s just one is, you know one is the tails and one is the heads. So we decide to set some of my sperm aside, so my wife can now, you know, realistically talk about babies with me, it was a good decision. But the harvestation of the sperm was very fraught, because, you know I'm sitting there in the hospital room, and my mom calls the sperm bank for me. She gets all the equipment, gives me a tube and she looks at me, and she says, “you gotta… do this. And then I guess call me when you're done. I'll be waiting outside.” So she steps outside
Mary: What are you thinking at this point?
Max: I'm thinking this is the fucking weirdest thing that's ever happened to anyone. I am right now binding one of the most humiliating and strange moments with my child's D.N.A. — with like what eventually will be calling me dad, and like whenever I look in this kid’s eyes I'm going to be remembering the creaking sound of my hospital bed, you know that I am making matching with the beeping of opium drip. You know it was very weird — every teenage boy has some story about a time when — usually it was their own impulse to masturbate — led them into a weird situat — this was completely set upon me by the world and it was very very strange.
So and then I end up producing, and I go “MOM” and mom is waiting outside I hear her. You know she's Israeli and she always has bit of an accent, which I can't do properly, but I think captures her gestalt. So my mom walks in, takes my sperm and she sticks it into her little like lipstick pant pocket, like this really hip little lipstick pocket she has, and she goes “I was the first one to hold my grandchildren before even their mother” and then like laughs to herself and walks out of the room, and again I turn to the dilaudid pump and I try to make it go away.
Meanwhile, Max’s family and his doctors were also figuring out what to do about his cancer. Max got pulled out of school, and sent across the country.
They flew me New York for treatment at Sloan Kettering, my alma mater.
Mary: Were you treated in a pediatric ward?
Max: I was, which was really, you know, wild.
Mary: Why?
Max: Well first of all, the aesthetic of a pediatric cancer ward is very, very different and very, very sad. The walls are all very colorful, there’s like a massive playpen with like costumes and arts and crafts for the children, and —
Mary: But you're sixteen
Max: I'm sixteen, I'm a little too old for this. And I'm trying to go through, like, transitioning into adulthood and, it was sort of, you know, I was really infantilized by by the experience a lot. My father was was bathing me again because I was too weak to bathe myself at some points, you know, my mother and my stepfather was pushing me around in a wheelchair, and like, you know reading out loud to me because I was too weak to read to myself, it’s been a long time since storytime, you know.
Mary: But here’s what gets me, which is you’re sixteen, you’re basically almost an adult
Max: Yeah.
Mary: But you're in this in between state where your parents aren't telling you everything about what's going on, but you probably can make your own decisions —
Max: At a certain point they started telling me, you know, there weren't that many decisions to make in terms of the course of the treatment, the doctors were very very specific in terms of what they wanted for me, there was a rigorous protocol. And I just said, “throw it at me. Western medicine.”
Mary: And the cancer went away
Max: Yeah
Mary: And you went to college.
Max: Yeah I did.
Mary: Did you think it was over?
Max: Yeah I thought it was totally over. I thought it was completely over. I thought I was fine.
After the break, Max’s cancer comes back. And — he falls in love. This is Only Human.
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Last week’s show touched a nerve with some listeners. It was our confessions episode. We heard some of you tell us about how you lie to your doctors — and we heard some pretty intense stories from doctors, too. If you want to give us feedback on that show or any of our other episodes — leave a comment for us at only human dot org, or find us on Facebook and Twitter. We’re at only human. Also, if you haven’t yet, subscribe to the show! You can do that in iTunes, or wherever you get your podcasts. And while you’re there, think about leaving a review. It helps other people find us.
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For a long time after his cancer went away, Max Ritvo was fine. He went off to school and made new friends. He got interested in poetry. But then, three years ago, when Max was starting his senior year of college, he had a check-up. And the news wasn’t good.
I went in for routine scan because they make you go in every six months. And they said “Oh..ooohh guess what.”
Mary: Surpriiise
Max: Yeah. Yeah and I was really, it was really a blizzard at that point. They signed me into a chemo again without me really knowing what was going on and, you know, I held out hope that I would just get through college. And I lost all my hair, and I lost some of my friends, and I gained some much closer intimacies with some other friends than I've really ever had with any other human beings, ever, other than maybe my wife?
Mary: Why’d you lose friends?
Max: Um. It became a lot for some people to handle. I was no longer able to, to think and feel at the pace I was, I’ve sort of always had kind of frenetic extroversion. And I couldn't keep pace with them, and I started getting very resentful at a certain point, because I saw my star setting as all of their stars were rising, and I've always been an ambitious person and I just saw all these people are going on to such promising lives, and they're going to do incredible things, and I'm not.
Max graduated. He continued treatment, and started dating his old friend Victoria. He started a master’s program, focused on writing poetry. And then his cancer spread again.
Mary: Do you mind talking about your prognosis now?
Max: Sure, um...
Mary: What do you know
Max: It's not good. It’s not good. I am, uh… I am.... You know there's no data on Ewing’s this far out. They say after your second relapse, or metastatic Ewing's, once it’s spread everywhere you have like thirty percent shot of living five years. Every Ewing's paper begins “the prognosis for Ewing’s Sarcoma remains dire.” So I'm doing immune therapies right now. I'm on PD1, which stands for program death one, isn't that lovely?
Mary: Well how much of your life now is dealing with cancer, whether that's like bills or treatment or whatever, and just like a normal twenty-something life with your wife and everything else?
Max: You know a lot of my life is cancer. It really fluctuates. It’s been a transitional period, I just finished my M.F.A. I got offered a job teaching at Columbia and the university writing program. And then right as I was preparing to do that the cancer came back in the lymph nodes and people started looking at me different, in terms of the doctor they started saying you know, “think about what your next couple months look like, because they might be your last healthy couple months” and that was the first time I'd really heard that.
Mary: So you're really living life just sort of like day to day, like month to month.
Max: Yeah yeah I am. I'm working on a manuscript very hard. The writing is the only thing that I've sort of really consistently held up, and other than that it’s yeah it’s month to month.
Mary: so... you're just at this very particular place where you have so much life in you, and I feel like you're making these decisions... You just got married. You're talking about kids. It's --
Max: Yeah it’s nice to pretend, and maybe it won’t be pretend and if it's not pretend, better to be prepared. And look I think as long as you engage with, as long as you engage with reality sometimes it's OK to acknowledge the fact that reality isn't very well suited to us. We do better we do better elsewhere.
Mary: When we're planning this interview, you said the one thing that makes you uncomfortable that nobody really thinks about is how much we talk about the future. when we talk.
Max: So much of conversation is future oriented. So much. People talking about -- they make these plans you know. I watch these people and they go “This this time is going to be different. I got the whole next six months figured out. I'm going to start running. I'm going to adopt and even vegan-er diet. I'm going to call my father, though we are estranged, I'm going to call my father once weekly and discuss with him things of his interest. This next six months are the next six months of my life.”
Mary: And when you hear that what do you think?
Max: I think “F**k You!” no I'm sorry I should watch my language, I think.
I think I envy that reset button that people seem to be able to press you know. And I miss that. I feel like they're disrespecting the present, which is all I have. I’m a big partisan for the present now.
But...Yeah. I like talking about the future with my wife. She and I are on the same page and I feel with her that if we're engaging in any talk we really have the same understanding in mind. And that understanding is that there is a shadow life haunting our future you know. Beneath the little glowing golden house that’s swimming through our minds, there's a bed of ashes, you know and there's a there's a funeral there and we can't escape that.
Mary: Do you have any plans, like this is what life looks like if it goes this way this is what life looks like…
Max: I write a ton of books and I teach and I have a wife. That's enough, if it goes right. If it goes wrong. I do the best that I can to insulate her, something that scares me a lot and that I think about a lot of her having to deal without me, but I'm hoping that the kinds of things that I'm teaching her are things that would last if I wasn't there. The same way if something were to happen to her, I would have grown so immensely from my exposure to her. But that's all, that's all that I'm really … If, in the worst case scenario, I want to write and I want her to be OK. That's it.
That was Max Ritvo. He teaches at the writing center at Columbia University, and is shopping his manuscript of poems to publishers. You can read some of Max’s work at onlyhuman.org. He’s still getting treatment, and we’ll let you know how he’s doing.
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Many of you listening have your own experiences of cancer. I do. I told my story in our first episode. And if there’s anything I learned from talking to Max - it’s how different all of our experiences can be. So tell us your stories by visiting our Facebook page -- search for only human podcast — or leave us a comment at onlyhuman.org
Only Human is a production of WNYC Studios. This episode was produced and edited by Molly Messick with help from Amanda Aronczyk. Our team includes Elaine Chen, Paige Cowett, Fred Mogul, and Kathryn Tam. Our technical director is Michael Raphael. Our executive producer is Leital Molad. Special thanks to Winn Periyasamy and Lena Walker. Also, we want to give a big thanks to our friends at the Brian Lehrer Show, who helped us out with last week’s episode. Jim Schachter is the Vice President for news at WNYC. I’m Mary Harris. Talk to you soon.
Max: Hi, I’m Max Ritvo, and I am only human.