Transcription:
The "C" Word, Community not Cancer: Rocco's Story

Dr. Basha: Welcome to Conversations on Cancer brought to you by the Riverside Cancer Institute.

Dr. Austin Basha: I am Dr. Austin Basha, a medical oncologist and hematologist at the Riverside Cancer Institute. Today's episode is part of The C Word, Community, not Cancer series. In this series, we invite guests to share their own experiences with cancer and help them to relate to others. In this episode, it's going to be a little bit unusual. I'm not talking to one of my patients or anybody I'm professionally connected with, and this is actually Rocco Versaci. He is a high school friend of mine. Going back, I guess, 40 something years, more or less. And who's had his own experience with cancer and it's a compelling story, and he's a compelling storyteller.

That's why I invited him onto our episode today. Rocco grew up in the Chicago suburbs in downers Grove where I did, we went to high school together. And as he says in his own book, he's a product of an Italian, American family, too many movies and countless books. And a Midwestern suburban adolescents. He studied here in Illinois, university of Illinois. Eventually moving to Indiana university in Bloomington, Indiana, and now h is occupation or profession is a professor of English literature at Palomar college in Southern California.

Anyway, so Rocco this brief introduction obviously is undistorted because he had his own experiences with cancer. Rocco actually fought cancer twice now and is here to tell the story. So I would like you to get into details Rocco about how it all started up for you.

Rocco Versaci: Yeah, thank you. And thank you for having me here. So like you said, my cancer story is kind of in two big parts. The first one happened in 2003. I was 35 years old. And I was wrestling with my son and his head hit my chest and I felt some something strange there. Like it was a strange pain, and I probed a little further. And I could feel a little bump underneath the skin. And I didn't think too much about it at the time, but eventually it was bothering me enough that I went to my doctor and he started ordering a series of tests. And probably about a third of the way through that process. I started Googling some of this stuff and it became clear that were looking for cancer of some kind.

They thought at first it . Might be, you know, male breast cancer. It wasn't that. Turned out to be a germ cell tumor. So the treatment for that was as far as I understood it was the same chemotherapy, cocktail used for testicular cancer. And I didn't have any surgeries or anything like that, but I did have a total of nine weeks of pretty intense chemotherapy where it would be, you know, one full week, pretty much the entire morning. And then I would have two weeks off except for getting one of the drugs every Monday of those off weeks and then start the whole thing again. And it was pretty hard.

I mean, it was a tough experience. There were definitely side effects with the whole thing. I was terrified. I felt pretty young, and I pretty good health and there was no history of cancer in my family or anything like that. I had two young kids. sons were seven and five at the time. So I mean, most of my fear was really about thinking about them and them growing up without a father and you know, that was just really, sometimes just paralyzing

Dr. Basha: Yeah. Yeah. Just so the listeners know, I'm actually getting a lot of my information besides knowing you, Rocca did write a book. I forgot to mention the beginning of this after his experience. The book is called That hidden Road. And so I did take some notes from your book Rocco. And before we kind of move on a little bit, when you were first diagnosed with the germ cell tumor a couple of things come up is the fact that you didn't know what was going on. And so you Googled a lot, what's your experience of Googling things when you're not on what's going on? And you know, I speak as a professional and always say, oh, don't Google anything, but it serves a purpose, correct?

Rocco Versaci: It does. And I agree with you though, because you reach a point, I think, where it's diminishing returns. It's just an overload of information. And I mean, for me, it was the most helpful part of it was just to understand like what this was exactly, how the treatment would work. Things I could expect in terms of like side effects and things like that. I started to back off of that a little bit when I started to get into, and this kind of ironic because I love stories. But when I started getting into individual stories about people, who've had this particular cancer, because it's kind of a mixed thing. Some people get through it pretty easily and recover and others don't. And once I started absorbing a lot of those stories, I knew that I had to kind of just back off a little bit.

I did seek a support group. I asked my nurses if there was something like that going on. And it was kind of a strange thing for me. I've never really seen myself as kind of support group person or I don't know, just the whole idea of sitting with a bunch of strangers and sharing details isn't something that appealed to me, but there was something inside of me that just felt like this would be a good thing to do. I wanted to be careful not to not to miss anything in the whole experience. I just felt early on just being overwhelmed with, you know, all the science stuff, my own research, things going on with my family and friends.

I started keeping a journal. I felt like that was going to be really important. And then I went to this group and. Man, it was so enlightening for me. I took so much away from that. And nobody in the group had, I mean, everyone had a different kind of cancer and they were in different stages of treatment. Some were not doing well. And there were a couple of people in that group that ended up passing away during the time I was i nvolved with that. And that was of course you know, frightening on the surface of it. But I mean, I just remember, I remember two people in particular and just the kind of grace that they had. The kind of peace they made with things. I jumped up just remembering it. But it was really something. It's a part of that experience that I'll never forget. And it was very helpful for me as I was going through everything and the journal was really helpful too.

It was a place for me to. You know, it started out, I was just trying to write everything down, so I wouldn't forget things that happened. And then morphed into more internal, philosophical musings, but I know that your conversations with people really focused on community, and I think immediately of that support group,

Dr. Austin Basha: Yeah, no, I did some of the interesting things I recall from the book was just the fact that, somebody whose advice would just really practical, like take a blanket when you're to the pet scan. So you don't get so cold. And then some, I think can remember who it was, but somebody was explained chemo, fog, or brain fog to you. And things that sometimes the doctor, they forget to tell you that to expect, but help you kind of get through those, like what's going on kind of things, right?

Rocco Versaci: Yeah. That was a woman named Sarah in the group and she was one of the people that passed away. But yeah, the brain fog was chemo brain that was really frightening. I mean, I'm a big reader, you know, like you mentioned, I teach writing and literature and I couldn't read a book. I just could not focus for long enough on words on a page. And then I started worrying that it's permanent and was my brain being rewired or something. So, I mean, it was helpful to hear from other people.

Dr. Austin Basha: Yeah. So I think, I love the idea that you reached out to community. You can create it like a community of people around you to support you through these other patients. And that's pretty amazing. In your book, you also talk a lot about, you know, communicating with family. Not all that easy, obviously. So telling your family about you having cancer and everything like that. When you barely knew what was going on too, right? It was kind of early on when we were talking about all of this.

Rocco Versaci: I have to say that telling people about it was one of the hardest things I've ever had to do. And it wasn't about, you know, I know sometimes people feel shame about being ill. It wasn't that, it was just I knew like in the second before I said something to somebody, family, friends, whatever that I was gonna, like, just totally rearrange their world. I knew that they were going to feel this kind of awkward pressure and how to respond. And I just felt like I was holding this kind of horrible power, this information and and it never got any easier. You'd think that, you know, telling people over and over it becomes road, but it was like each, each time it was this really, awkward, uncomfortable drama that just kind of had to play out.

And my parents in particular, I was in California. They were back in Chicago. My mom was already demonstrating signs of dementia. And you know, of course there were hearing issues too. So a lot of times when we had just normal phone conversations, I would have to repeat things several times. And I kind of strategize with my brother a little bit about how to do this. So, I told him first and he was going to have them over for dinner and then he actually told them first before I called. So it already kind of softened the blow a little bit. And at the same time, I can't remember why, if this was a function of the chemo, but I'd been losing my voice. Like it got really hard. I mean, it was probably stress-related too. So then I was worried, I wasn't going to be able to voice what I needed to say, But yeah, it went as well as could be expected.

Dr. Austin Basha: Yeah. Yeah. I mean, obviously. Getting people that information, because everybody's worried about you, you were worried about them. as you mentioned earlier, you're worried about leaving your kids fatherless. So there's all the stress of what's happening to you and how you communicate that to everybody. As far as advice goes, you know, I do take care of patients with younger kids, or even just kids in general. How do you communicate with them?

Rocco Versaci: So that's interesting because it was quite different, you know, given the two bouts with cancer, they were 10 years apart. So, like I said, Nick and Tony were seven and five the first time. My wife at time, and I decided that we would be you know, try to be as straightforward as we could, but you're still putting it in kids terms. I'm sick. I'm going to need to take this medicine for awhile. That's gonna make me look different. My hair may fall out. You know, I may not seem really well. And we reassured them too, and I didn't feel great about that. Cause I don't, one thing became very clear to me early on is that there's no guarantees about anything, so to say to someone it's going to be okay.

I mean, you don't really know. so I mean, we did do that with our kids and I mean, I've talked to them about that, especially in light of the second, go around. They don't really remember it very well. They were kind of vaguely aware that I was sick. I mean, I wanna say they were both in school at the time, so they weren't really aware of me going anywhere, you know? Cause I they'd go to school. I'd go to chemo. I'd be home before they would. I certainly had like a lot less energy to play with them that I typically did. Now the second time around, they were teenagers 17 and 15 and I was no longer with their mother. But I was with my my current partner, Shannon and just kind of straight up, told them, they were very aware of what was happening. I don't wanna get too far ahead of myself with talking about the whole second thing.

Dr. Basha: Sure sure.

Rocco: I think I hear things later, like, they were very close to, they still are to a teacher of theirs in high school who's also their their running coach. And you know, I reached out to her and let her know what was going on. And then she told me much later that she had approached my younger son. And asked if he wanted to talk about it and he just, he didn't at all. And then later, I think I read an essay that he wrote for a scholarship or something. He had mentioned, you know, the difficulty of watching me go through this. And that made me feel bad too, that your child's been sitting on it, but I think in some ways that's okay. It's probably exacerbated because they're boys and I think boys in general, just don't talk about that stuff. And also just any child watching their parents, who's really sick, that's tough to process and may not want to be very open or vocal about that.

Dr. Austin Basha: Why don't we go ahead and talk. So basically you got through this four cycles of chemotherapy and recover from that and get into in between stuff later, but, you survived, right?

Rocco Versaci: I did.

Dr. Austin Basha: Yeah. And then 10 years later, that's when it occurred.

Rocco Versaci: Yeah. So, just that in between time allowed, you mentioned the book and one of the things that I had been doing before I got sick is I would bike and it was mainly commuting to school. But I liked the idea of biking and of course, went through chemo. And then for quite a while, after that, I just had no energy for any of that. And at some point I got it in my head that I want to ride my bicycle across the country. And I started with this 50 mile ride down in Mexico that I, since I was feeling better. I started training for. And then other things happened with, just personally where I, my marriage ended and I started really focusing on this bike ride. And, I ended up doing that. And in the process of that ride and also writing about it, my experience with cancer became kind of a central part of that book.

And I don't think I realized like even on the ride, I don't think I realized until I was actually writing the book, how much that ride was fueled by my first experience with cancer. And there was this big sense of accomplishment and everything. Okay. So, as part of my ongoing maintenance, you know, it started out think I'd go in quarterly to see my oncologist. There'd be blood tests. There'd be x-rays, I'd have CT scans and then that got down to pretty much annual, it would be like a chest x-ray and and a blood test and everything, by the way, one of the lingering effects from the first round of cancers, I just developed this incredible needle phobia.

I didn't have a port or anything like that. So, I had to go in there and it was really tough for me. Just going in for blood tests afterwards. Yeah, I'd be almost paralyzed in my car trying to steal myself to go in to get a stupid blood test. So as part of my, it was just a little over 10 days, I think, or 10 years, I think I just posted something on Facebook about celebrating 10 years being cancer-free. And I went in for my annual checkup and my oncologist walks in and says your numbers are up.

Rocco: For a long time after my first experience with cancer. I mean, I've thought about it every day and then that kind of faded away. And I got to the point, you know, 10 years later where I really didn't think about it, all that, just kind of around the times when I had to go get my blood work and go have this 10 minute meeting with my oncologist so he could tell me that everything was fine. And that didn't happen this time. And man, that was really something I remember saying to people after the first time, but I don't expect to ever be that scared for myself again. And I was wrong. It's amazing how fast that comes back. We talked for a while and then he sent me just to the desk to schedule, I think it was a CT or a particular ultrasound, something like that.

And I had a panic attack. I could just feel myself. I could just feel the blood draining from my body. I got cold and clammy. The the nurse looked at me and she said, are you okay? And I was like, I don't think so. And then, there were tests that followed everything and I remember very clearly being in my office at school. And my doctor called with the results of the testicular ultrasound and told me that it was definitely cancer. And I can't remember all the details. The next thing I remember is I was at home. I had biked home. I have no memory of that bike ride home from school. It was just really, really scary, just the whole way. I mean, you think you're, you're done with some things, right.

And, and you're not And I think intellectually after the first time, I would say, well, you know, you never know what's going to happen. And now, I just really feel that having had that. So the first time I had cancer with a germ cell tumor, the second time was testicular cancer. Everything about it was worse. I was 10 years old. The chemo hit me. It was a little bit different. One of the drugs I took the first time around, I could not have again. So as a result, they added an extra cycle. So it was 12 weeks instead of nine. I was very sick through a lot of it. I mean, there were days where I just couldn't stop throwing up. There was surgery too. I had a testicle removed. I had a port this time, which I don't remember being given a choice about that, but it was much better than having to be stuck all the time.

After it was over. I had to have pretty major surgery because there were tumors in my around my lymph nodes which they suspected were probably something called teratoma benign, but it was a pretty involved surgery. It was like six hours. There was retroperitoneal, lymph node dissection. I had to put that on all my doctor forms now and, every time a doctor will say, what is that? I can show you the scar. And I was in the hospital for a week. I got out briefly. And then I went in and they told me that the biopsies were all, it was all benign. You know, it was cancer-free.

There was momentary, swelling, every time. And then I asked about being really, it felt really bloated and tight and the doctors started taking a couple of the staples out and all of this liquid just started gushing out of me. It was just all this lymph fluid that had been collecting. I went back into the hospital for about a week as they monitored the situation. That whole thing I can say that surgical complication was way worse than the chemo I had gone through. And that was pretty bad. But I had to be in a zero fat diet for a while. You know, when they let me out of the hospital, I was giving myself injections of this hormone, like three or four times a day, which was something I, if you had told me, like before this you're going to be giving yourself shots. I'm like, I can't do that. It's just amazing what you get used to.

Shift to normal and you adjust to it. And I had to be in a zero fat diet, which is pretty brutal. I mean, I dropped down to probably about 145 pounds on typically around 185. I look at pictures of myself from that time and I look like a skeleton with skin on it. I don't recognize myself really.

Dr. Austin Basha: Yeah. Yeah, give me one second here. I just want to reassure our listeners also in every cancer, a little bit different. So the particular type of tumor that Rocco had, his particular kind of cancer, it does have a long latency period. So we do. Recommend for patients with those particular types of cancers and some others, we're going to keep an eye on you for 20 years. It's actually in our guidelines, just so you're aware. Whereas other cancers, we feel much more comfortable oftentimes saying after five years, that things are good. But each again, everybody's different. Like Rocco said earlier, we try to use the best of our knowledge and we know we don't guarantee anything, but 10 years down the line, don't be scared all the time, but certain cancer, we do keep an eye on.

Rocco Versaci: And the way I understood it is that this was not a recurrence.

Dr. Austin Basha: A second primary.

Rocco Versaci: Yeah. I mean, it's possible that it, I mean, it could have been triggered by the treatment. I don't know, but I mean, the way it was explained to me by my doctor, it was just kind of like bad luck.

Dr. Austin Basha: Yeah. Actually, one of the thing in your book, I did write down for myself. You mentioned the first time you went through the chemotherapy meeting your medical oncologist for the first time that in causes job, as far as you figured was not to put a patient at ease, but to explain things, you think that's the case?

Rocco Versaci: I think it's of my doctor. He's a wonderful, just very matter fact about it. Something I came to appreciate. I didn't need more excessive, you know, kind of but, I mean, that's how I saw it with my doctor. Just like every cancer is different.

Dr. Austin Basha: And we actually try to change ourselves for patients depending on what their needs are in some ways You gotta be who you can be for that patient.

Rocco Versaci: Yeah, it is. Just, you know, you talking about how everything is different. One of the things I became involved in after my first cancer was actually a group in Chicago called Imerman angels. And what they do is they pair. Cancer survivors with people going through the same kind of cancer. And I had, I think I've been paired with three people. The third one was a guy named RG who lived in in the Chicago suburbs and became really close. And we just have a whole lot in common.

He had a germ cell tumor you know, and I'd go to Chicago and I'd visit him in his family and his, his dealing with that ended up being much longer than mine and did not have a happy ending. He had a secondary diagnosis, I think of some kind of leukemia and just, you know.

Dr. Austin Basha: Sorry for that.

Rocco Versaci: But it's a really good group though. And I wish I had known about it when when I was going through cancer the first time. But yeah, I remember, you talking with him and like, there was so much that was similar about, and I would tell him things that I experienced, but then it took a turn. And he was dealing with a lot of things that I was just lucky enough to, I didn't have to.

Dr. Austin Basha: Yeah. The phrase tell a little bit more. I just want to talk about, so Rocco mentioned about that a cross the country bike ride. So that is the topic of the book called That Hidden Road by Rocco great book. And I got a lot out of it. I got a lot out of it reading it, even just in terms of other issues with my life at that time. So it hit a lot of things for me. But for people who are interested in that book and it's really across country tour, you know, in given a lot of details, a lot of personal stories, as well as about his cancer and even includes cartoons. So I strongly encourage that people would get that book if they can, or at least go to the library. So, do want to put that out there.

Rocco Versaci: So something that was interesting about the book is that I wrote a lot about my first experience with cancer. Cause at the time of the ride, that's all I had. But I was going through my second experience with cancer as I was working on the revisions for that book. And it was really, I mean, if you know something good can come out of it, it was that secondary experience really helped me in writing about the first experience, because instead of struggling to try to remember some of those feelings, I was going through them again. So they were right there.

And that just reminds me of something with the support group. And then in the writing of the book is for me, I know people deal with these kinds of things in different ways, but for me writing really saved me. It's just always been a place I've gone to, to make sense of things. You know, my life, the world, whatever. And that journal I was keeping the first time was really helpful. And then when I went to the support group, what would happen when a new person would come in, everyone would kinda tell their story. And it occurred to me at the time and then later, I really lived, this is that, people talk about, fighting cancer and, as if it's some kind of enemy, but it's really, it's your body. It's your body kind of going awry.

So it's you, right? It's part of you. And there's such a feeling of a lack of control, not just with cancer, but I think any kind of illness when your body's imperiled, you know, you just realize how out of control things are, but telling the story. Even if it's of that illness is a way of getting a kind of control over it. And I would pick this up on the other people in the group and I would hear it in myself too, as I would talk about it. Like it was me giving it a kind of structure, giving it a narrative and a story. And if I was the storyteller, I could be somewhat in control of that. And it's, I think I said in the book, it's an illusion, it's a really powerful illusion.

And that really came home to me I writing going through this again where the revision to that book became this kind of kind of therapy for me.

Dr. Austin Basha: Yeah. And that's in a way that is actually one of the germs of this particular podcast series that I've been trying to do is to allow people to tell their stories, allow people in addition to helping others, it is about re-experiencing it in a way that you feel in control finally of being able to tell it, and that's part of the idea behind it. So I appreciate you saying all of that. So we'll start wrapping things up. Is there anything else you want to say about your experience and maybe advice to anybody else who is dealing with any of this? .

Rocco Versaci: You know, sometimes in things I've read, not just about cancer, but I read a lot of memoirs and typically memoirs are triggered by some kind of trauma or drama or something like that. And then there's always this kind of statement about, well, I don't want to be defined by this. I don't want to feel defined by this thing that happened to me or this thing I went through. And I understand that but it's for me, I mean, it really is a part of who I am and unlike the first time, I mean, I do think about it every day now.

I can't not, see the scar on me from that, from the surgery, the smaller scar from the port. I've got some some tinnitus that I'm pretty sure as a result of one of the chemo drug. So it's just kind of always there with me. And I understand, like when you say you don't want to be defined by where it's not all your about, and I totally agree with that, but it is a part of who I am. And I would never want to go through it again. I said that the first time. So we'll see what happens. But at the same time, I kind of can't imagine like who I am now without those two experiences with cancer, I mean, it's just, it's really reoriented my frame of mind it's really brought a lot to my teaching and kind of not obvious way.

Just the way I deal with things I mean, it's altered me, no doubt about it. And I think if I have one piece of advice to offer, it's like, don't resist that, but think about how that alteration can be a positive thing.

Dr. Austin Basha: Yeah. I understand what you're saying. That's great. Rocco. Thank you so much. It's amazing reconnecting with you after all these years and getting the story out. It's a wonderful story, especially since you beat it twice, and God willing it'll stay that way.

Rocco Versaci: Appreciate you having me here, Austin. It's thank you so much for reaching out to me and it has been wonderful to reconnect. Have to get up to Chicago one of these days. It seems safe to travel.

Dr. Austin Basha: Definitely. Definitely. So I want to thank you again for coming here and sharing a lot of experiences. I want to thank my listeners for tuning into this podcast series Conversations on Cancer, brought to you by the Riverside Cancer Institute. I look forward to sharing more stories through this particular series, the C Word, Community, not Cancer. And stay tuned for further episodes.