An Intimate Conversation About Sex and Life After Prostate Cancer
My friend Richard Stuart Perkins, 60, a talented photographer, agreed to open up about how we continue with our gay lives during or after transformative illness.
Caftaners, I write you on the eve of Pride Weekend here in NYC. And as hungry as I am for dancing, music, minimally clothed hotties and general revelry, I’m also hungry for every crumb of news indicating that, after last night’s excruciating-to-watch presidential debate, the Democrats are planning for an open convention in August. That’s all I can think about after that dumpster fire last night.
Meanwhile, however, I have a very special Caftan interview to share with you before I head into this Pride weekend and then take a week off. (I do have a great Caftan interview to do on July 15 - so excited to do it and share it with you after.) You’ve likely noticed that most of these interviews are with older gay men who have different degrees of fame—and I love getting the big names, but I also want this to be a platform about how we live our lives between, roughly, age 60 and our exit from Shakespeare’s stage, and hence I don’t think Caftan interviewees have to be public figures to have something really important to offer. So in that spirit, I want to introduce my talented photographer friend Richard Stuart Perkins, 60, truly a beautiful man inside and out. I saw him at the Folsom East leather street fair here in NYC a few Sundays ago and we got to talking, not for the first time, about his life after prostate cancer surgery. And he agreed to talk to me about it for Caftan, which is what you’ll read below.
I want to stress, this is Stuart’s story. Prostate cancer, as common as it is in the U.S.—where it’s the most common cancer in men aside from skin cancer—is different, and requires a different treatment course, in every person. So, at the risk of sounding boilerplate, I want to say that this interview is not meant as medical advice, except to say something you already know, which is that prostate cancer is one of several things that your health provider should be screening you for. Rather, what I think is really valuable about this chat with Stuart is his narration of how this illness has affected not only his sexual life but his entire life, including his sense of himself. Because if we’re not already experiencing some life-altering health issue, we all likely will at some point, and I think it’s useful to think about what we would want our relationship to that illness to be, and to be open to the possibility that something could happen to us that could vastly—even depressingly, even devastatingly—alter our life as we know it, and that yet we could go on having a life, albeit under new terms. That’s what I think is so beautiful and valuable about this conversation with Stuart, who was extraordinarily generous in his openness.
I got my start as a health writer in my mid-twenties, volunteering as a writer for GMHC’s magazine, interviewing people living with AIDS (many of whom have since passed) and those who cared for them. Thus began my conviction that there is nothing more invaluable than people talking openly about illness, be it physical or mental, because that gives other people guidance and hope and a reference and a sense of not being alone, which are major things anyone needs—or at least could benefit by—when they’re sick. Since then, I’ve been on the receiving end of more personal health stories that I can count, and I’ve tried to be equally open about my own experiences with mental illness, addiction and living with HIV. I guess it’s because I wanted to put my health challenges to good use by sharing them with others, and Stuart did this interview in the same spirit. I’m very grateful to him. If you are too, perhaps consider reaching out to him via his Instagram and buying some of his work. As he mentions in this talk, his illness stalled his career and he’s trying to get back up to speed.
Here’s our very frank chat, which I’m not going to paywall because I’d like everyone to be able to read it all the way through—but I will once again ask that if you’ve been reading Caftan free for a while and like what I’m doing, please consider subscribing at $5/month so I can free up more and more time for this project and give you more content.
I’ve said before that I’d love to get to the point where I can afford to post an interview or something useful and/or fun and/or sexy at least once a week.
I’ll see you again in July…until then, enjoy the summer and pray for mercy for the U.S. and the world! xTim
Tim: Stuart, thank you so much for being willing to talk about your prostate cancer experience. So, to start, where do you live?
RSP: In Williamsburg, Brooklyn, with my partner, Jeff, whom I've been with for 32 years.
I'm a visual artist, a photographer, with an MFA in film directing. I spent many years producing commercials. I like to paint, too.
Tim: Okay, thanks. And how old were you when you were diagnosed with prostate cancer?
RSP: Fifty-six. And I can thank for that Rudy Gaudron, a nurse practitioner at Callen-Lorde who specializes in anal health. I've met so many men my age or younger who've had anal precancer or rectal cancer who've never had any thought about being screened.
Tim: Do you mind me asking if you are living with HIV? Because, even though you had prostate cancer and not anal cancer, gay men living with HIV are at the highest risk for anal cancer, and I've written a lot about how to advocate that you get properly screened for it.
RSP: I'm HIV-negative.
Tim: Okay, thanks. Had you had any major health challenges prior to your prostate cancer diagnosis?
RSP: Not really. I had a finger cut off by a glass window that came shattering down on me, but they reattached it. I grabbed the piece of finger went to the E.R. in Harlem and said, "I use my hands for work, I need a plastic surgeon." I kept thinking, "Here I am, another Black man covered in blood in an E.R. in Harlem, and I need them to see that I'm more than that and to not discount me." I'm happy to say you'd be hard-pressed to see any evidence of a decapitated finger now.
But my father died of prostate cancer that metastasized to his blood when he was 64.
Tim: Have you always had a fear of getting it?
RSP: Not really. My lifelong anxiety about dying has always involved drowning. So when my dad died after having had prostate cancer for 14 years, I knew that as I neared 50, I needed to get screened.
Tim: Right, and guidelines say that Black men should start being screened for it as early as 40 because they have higher rates of it and are more likely to die from it.
RSP: I started testing for it around age 45. But between ages 55 and 56, my PSA [a protein used as a marker for prostate cancer] started inching up and one day Rudy said that it concerned him and that I needed to see a urologist, which I did in North Carolina where my mother lived, and that urologist was immediately concerned and said that I needed a biopsy. But before I did that, I decided to get a second opinion, but that second doctor, at Memorial Sloan Kettering in NYC, agreed, so I scheduled the biopsy in North Carolina. Then they did the Prolaris score on it [to determine the cancer's aggressiveness], which was 7/7. I was concerned.
So at that point, I set up two different care teams—one at MSK and one at Duke in North Carolina. It turned out I had seven tumors on my prostate, all of them highly metastatic, and all the various noninvasive options not really available to me. It came down to whether I should have radiation plus chemo or have my prostate out. But no matter how I sliced it, so to speak, I was going to have erectile dysfunction. So I chose to have my prostate removed first, because if I'd done radiation first, I wouldn't have then had the option for surgery because radiation smashes the prostate together like a pancake. But if I had it removed first, then I'd preserve radiation as a treatment option if it recurred.
Tim: Wow. How would you describe your sexual life up to this point?
RSP: I've always been a very sexual, randy man. My 56-year-old self was just as horny as my 15-year-old self. I'd spent most of my sex life being a vers top. I was really not emotionally prepared to surrender my penis, but I figured with either choice, radiation or surgery, I was going to become impotent for a while. But radiation would cause a more definitive impotency than the removal of my prostate, because the latter wouldn't interfere with the nerves in my penis.
So I just had to put my mind at ease and tell myself that I wanted to be alive, and that what was going on in my body was going to kill me like it killed my dad if I didn't do something about it. Yes, prostate cancer is a slow-moving cancer, which is why you have the option of putting off treatment if you're old, but at 56, I wasn't.
Tim: So you were resigned—but did you go into a depression?
RSP: One-hundred percent. I'm still in that depression, because not only do you have to evolve into some other version of yourself that you probably never considered. Who thinks that there's going to be a day in their life when their dick doesn't work? And they told me I'd no longer ejaculate. Eventually I went into a support group in North Carolina where all the other men were in their seventies and heterosexual. So I couldn't really talk about the gay-sex aspect of this. So I reached to a Dr. Channa Amarasekara at Northwestern, who, four years ago at least, was the only doctor in the U.S. focusing on prostate cancer in gay men. He became my consultant because he understood that my other doctors couldn't answer my questions about whether, say, the removal of my prostate from my rectum would affect my sex life as a bottom.
After the surgery, I had to start taking Cialis right away, to tell my penis to get erections. I didn't know that our morning erections play a function in penis health, because they bring blood and oxygen into that tissue, and that if the penis doesn't get that, it atrophies.
Tim: And how did your relationship with Jeff figure in all this? Were you talking about all this with him, or with friends or—?
RSP: We live together but we haven't been sexual in a very long time. Because I was in North Carolina, I was away from my NYC social circle, so I wasn't talking about this other than with my mother and Jeff and an ex-boyfriend in Germany. Overall, though, I'm not a worrier. I ask my questions, voice my concerns, then say, "Well, let's have this experience and figure out what it is." I'm a details guy and I made a nice little checklist to prepare myself, which included giving up my ejaculating before I had to.
Tim: So you could say goodbye to it on your own terms?
RSP: Exactly. The night before my surgery, Jeff offered to have sex with me but I said no. I think we'd have gotten very sad and I didn't need that going into surgery. I'd thought a lot about what it meant to have an internal orgasm, to allow your entire body to experience pleasure. I remembered a moment in my life when I was making love to someone and neither of us orgasmed but we both said it was the best sex we'd had in our lives.
Tim: So at least you had a reference.
RSP: Yes, and I leaned into that idea that you can have sex without orgasm being the goal.
Tim: This is true. Have you had an internal, or I guess what is called an anal, orgasm since the surgery?
RSP: Not yet. Once since the surgery, a month ago, I explored anal play with a married bisexual guy. It was unplanned and unexpected. We're friends and I was photographing him, so he got naked. Surprisingly, I found his middle-age, nonathletic hippie body sexy. He has a lovely cock. I asked to touch it. That led to a full-on sexual encounter. He didn't orgasm though. I think he prefers to be blown to get off. But I enjoyed the experience. It made me think I would enjoy sex again when and if I connect with a guy in that way.
Tim: Oh, wow, okay. That's hot. So, the surgery—
RSP: My bladder needed to be full going into the surgery because I was going to be cathetered for 14 days upon waking up. And when I did wake up, they told me they were able to remove six of the seven tumors on my prostate, and that the removal of my prostate vessels and lymph nodes should starve that tumor and prevent it from migrating. And so far my PSA looks good.
Tim: How did you feel after the surgery?
RSP: I wasn't in a great deal of pain but I didn't like seeing my penis shriveled, with a catheter stuck in it. That was January 2022. First I had to deal with the fact that I'd taken care of my body and used it for artistic purposes all my life, and now my bellybutton looked pretty distorted because they removed my prostate through it. And then I have seven incision scars across my belly, and scar tissue along my goodie trail. My stomach will never be perfectly flat anymore. And psychologically, I had to deal with the catheter. I figured out that I could put the catheter bag in a satchel bag and wear that with long designer shorts so I could go out.
The other thing was penis shrinkage, which Dr. Amarasekara and my other doctors had talked to me about. Amarasekara suggested that I look into medical-grade penis pumps and stretching devices, which, used together, help to preserve length. For up to two years after surgery, you don't get an erection, so, as I said before, that tissue is atrophying. So the pump pulls oxygen and blood into that material. You put your penis in it and strap it down and it stretches out your penis. So I started doing that every day as soon as the catheter came out, to help preserve penis inches. I also have a light bend in my penis now that I didn't have before. I think I got my first erection six months after the surgery—I woke up with it, with shooting pain in my cock. It really hurt!
Tim: So your first erection after the surgery was not a happy occasion.
RSP: No! It hurt. It was like my hymen breaking, as it were. So then a new anxiety kicked in, because as much as I tried to get myself hard, I really couldn't. Porn is all so cum-centered, so I had a hard time watching it because I couldn't do that anymore. Why isn't there any porn out there for the guys who can't ejaculate? I've had to ask myself, "What does sex look like for me now? What does it feel like?"
A funny note: One of my dear friends is a straight guy who, after the surgery, texted me: "I know you've always been attracted to me, so if thinking about me will help get you hard—" (laughs)
Tim: Haha, generosity through narcissism!
RSP: Dr. Amarasekara also told me that a large number of gay men who'd been tops prior to their surgery become bottoms after, because their penises don't get hard enough anymore to penetrate a rectum. And while pills like Viagra are great, they're also based on trials of straight men having sex with a vagina, which is easier to penetrate.
Tim: Because the rectum is tighter?
RSP: Exactly. A bottom has to really relax to let you in. But I'm perfectly fine with being a bottom. I mean, if I'm at a banquet and I can pick what I want, it's not my first choice, but it doesn't mean I'll be unhappy. So once I started exploring that, playing with my butt, and I realized that I had no prostate to hit, hence a top can go in there more aggressively. But one day when I was still in North Carolina, I got really depressed and invited an escort over. But it was about as emotionally unfulfilling as one might expect it to be.
Tim: Did you tell him about your surgery?
RSP: Very much so, and he seemed sympathetic, but he was young. My second sexual encounter after that was a young guy who invited me over and I ended up rimming him for two hours.
Tim: Was it more fulfilling than the escort?
RSP: Much more so. I was surprised at how much kissing took place. It was full of care and love.
Tim: That's nice to hear. Was there anyone next?
RSP: Yes, a trans man I had an experience with at Transferno [a Brooklyn sex party for trans people and their admirers]. It was great. He's very handsome, and we had an interesting conversation about getting to understand one's body in a new way after having been in a different kind of body. I know this sounds highfalutin', but I understand whats it is to feel that your body isn't right. As much as I still love my dick, it's not the one I've had my whole life. And emotionally that's really hard because it feels like a different me.
Tim: Have you ever just cried over the whole situation?
RSP: Absolutely—100 percent. And it annoys me when people say, "Oh, it's important to not be stressed." If you need to burn the fucker down, you need to burn the fucker down. If you need to be sad, you need to be sad. The only right way to do it is the way that's going to get you through it. But this trans guy was great, no platitudes.
Tim: What was the sex like?
RSP: Really fun. He referred to his vagina and butthole as his front hole and his back hole, and he said, "I don't like my front hole to be played with, but I love my back hole explored." We went down on each other. It was really fun. I'm attracted to a particular kind of man, both physically and emotionally, and he was that. Lean, athletic, smart, quirky, strong face—I'm into big noses and angular features. Nerdy-handsome. Prior to our hooking up, I wasn't even sure if he was trans.
Tim: So Stuart, it's been two and a half years since your surgery. Can you break up that time into chapters or stages?
RSP: Well, the pre-surgery period coincided with Covid, so it was layered on top of all that weirdness. And my mom and I had cancer simultaneously. She passed away two yeas ago, four months after her surgery. So it was an overwhelming, "What the fuck?" I wasn't angry or upset, just overwhelmed. I was like, "Okay, mom, we have to make a checklist of everything we need to do."
The first year after the surgery, I was kind of numb. I had that erection six months in, but I still wondered if my dick was really going to come back. My body was out of shape, too. I couldn't lift anything heavy. And then to complicate matters, I tore my right bicep and the meniscus in my right leg. So it was a tough year physically, which further exacerbated all my feelings of frailty and loss of youth. No matter how I sliced it, prostate cancer made me feel old. So that first year for me was one of melancholy, to put it mildly.
But now I'm in a state of anger. Because if you add it all up, it's four years of my life that got put on hold in a lot of ways and I haven't gotten it back. I'm not in the same place professionally or emotionally or with my relationships with my friends. I've spent $100,000 on bills. What the actual fuck? How am I going to monetize my life to get me back onto some kind of track?
Tim: Is it photography you want to pick up the slack on?
RSP: I just shot an editorial for Gayletter, and last week I did a shoot for a collaboration between the French designer Ludovic de Saint Sernin and the Mapplethorpe Foundation. Neither of them are viewable yet.
Tim: Have you and Jeff been intimate since your surgery?
RSP: Not in a sexual way.
Tim: It's so interesting, a bit off the topic we've been on, but it seems so common that close couples stop having sex after a while. I've definitely experienced this in my relationships, too. And you noted that you and Jeff had not been sexual for many years before your prostate cancer. Why do you think that is, generally speaking, why we so often stop having sex with the people we love the most?
RSP: That's a good question and I don't have a solid answer. I don't think it's necessarily negative, though. I think often sex has to do with exploration, discovery and release, and that very rarely has to do with love. Desire is often about things we want temporarily, like chocolate cake. You don't want it all the time. But also I think a lot of people don't know how to relax sexually with people they truly love.
Tim: That's such a good point. When I interviewed therapist Jean Malpas a few months ago, a gay former therapist of mine who works with a lot of gay male individuals and couples, he invoked the well-known couples therapist Esther Perel and said that when two people are sharing a life that involves finances, bills, schedules, maybe kids, etc., it's very hard over time to let go sexually with that person because your lives are so bound up in each other's.
RSP: My mom and dad were together 48 years, and my mom told me that physical fidelity was not nearly as important as emotional fidelity.
Tim: I love that your mom was so open with you, and I want to talk about her more in a second. But I also wanted to ask if prostate cancer changed you in ways beyond the sexual.
RSP: One-hundred precent. I have an actual sense of my own mortality now. I understand that my time is finite. You'd think being young during the AIDS epidemic would've taught me that, but it felt so otherworldly and cataclysmic. Like a lot of men my age, I honestly did not think I'd make it to this age. But this time around, I came so close to death that they actually had to cut a piece of my body out to keep me alive.
But then there's also, really, I don't give a fuck about so many things anymore. I say to myself now, "Why are you sweating that?" And I'm so utterly appreciative of everything now. You saw me on Sunday [at the Folsom East leather street fair in NYC on June 16] and I was in a really sad mood.
Tim: Why?
RSP: I'm lonely, to be honest with you. I had an incredibly close relationship with my mother and now she's gone. And I’m professionally lonely. Going into the pandemic, I had two solo shows lined up, including what was going to be my first show in Portland, Oregon, in April 2020. And I was about to be part of a gay art biennial in Detroit. And the other day, I got a notice about a show happening tonight with five photographers I know, all of whom started showing at the same time as me, and they're so much further along. I've had this sense of, "Can I participate in my own community anymore?" I need to get back to that.
But on Sunday I realized that I couldn't wear the leather I owned because it doesn't fit me anymore. And I didn't feel confident enough to be shirtless at Folsom. Someone there said to me, "Why are you so covered up? You're always naked." And I said, "Why don't you ask me why?"
Tim: Stuart, you still look absolutely amazing. Is that helpful at all to hear?
RSP: Of course. And yet at the same time, I need to turn that into something. I finally got back to the gym in May. Thankfully I have good genes and am blessed with a very high metabolism, so I don't put on weight very quickly. I might have one or two meals a day.
Tim: Stuart, it's very likely that someone reading this is going through prostate cancer, or has, or will in the future. What would you say to them?
RSP: I'd say gather an emotional support group, understand all the medical options, weight them, think about how you anticipate living with the consequences of this cancer. Cause there's always consequences. Radiation will delay impotency, but it will come, and chemo will change your body, too. And don't hesitate to talk about it. I like talking about it. I put myself on the apps [like Grindr and Scruff] to find people to take pictrues of, and inevitably I get hit on. "Fuck me." "Breed." I say, "I'm sorry, I can't." "Why can't you?" I explain. "Oh, I'm so sorry to hear all that," and then they disappear. So you really need people you can talk to.
And also: Be a Johnny Appleseed! Spread the word about how important it is to have screenings earlier than 50.
I think about my mom, who never stopped seeking joy in her life—ever. You can't say to yourself, "I'm not going up that hill because it's a hard walk." No. If you like that view at the top of the hill, you'll walk it. I know that sounds trite, but it's true. There are all sorts of little obstacles, but keep doing it. I'm not giving up.
Tim: I know from social media that you and your mom were very close and that you spent a lot of time with her in her final years. What has life been like without her?
RsP: It's difficult, I won't lie. She was my purest sounding board, my deepest pool of care, knowledge and generosity of spirit. To lose that person is irreplaceable. People say, "She's always with you, you'll have her in your heart." Yeah, that's all fine and dandy, but you can't replace that. It's been really hard for me. My mom and I spoke multiple times a day and it was never a stupid conversation. Now I feel—I won't say empty. There's just something missing. I'll do something and I'll really want to share it with her. While I'm painting or editing a photo, I'll wanna talk to her.
Tim: I hear that. Amid all the depression and anger and loss of the past few years, what are things you do on a daily basis to feel as good as you possibly can?
RSP: I try to make something every day. That's always given me a sense of accomplishment. I have a daily writing practice. I put together a book of my poetry and Aaron Tilford, who does the magazine Spunk, gave it away with an anniversary issue of the magazine. I try to take a picture every day. I try to give myself a meditation on gratitude, just being happy and thankful. I do my best not to want things. I try to find somebody to flirt with.
Tim: Well, I've felt this kinship with you in recent years because you're one of the few people in my age cohort I see when I go dancing at Carry Nation nights at the Good Room in Greenpoint.
RSP: I almost flunked out of Columbia because I went dancing so much. Pyramid, Peppermint Lounge, Negril, Uncle Charlie's, Studio 54. When I'm dancing, I'm happy. One thing that's kept me most happy is my friendship with [Carry Nation DJs] Will and Nita. I will dance all night. I'll do my disco nap and then show up at 1am and dance until 6am. I've never been a drinker or a drug taker. I'm in there high as hell on life. •
Thank you Tim. This is a very common fact of life for many men and we just don’t talk about it enough. Appreciate RSP being so open and vulnerable. That’s a gift to us all.
Thanks for this, Tim. I got emotional reading it—what a powerful story.