Kevin Lankes has been writing stories for as long as he can remember. His first story, written at age 5, was about giant mutant pizzas terrorizing the city. In 2011, at age 25, Kevin found himself at the center of an even scarier drama: stage III melanoma. The lesion started on his leg and had spread to his lymph nodes. His grandfather died of melanoma at age 36, so Kevin believes he likely has a genetic predisposition to the disease.
Kevin was treated by CRI Scientific Advisory Council member John Kirkwood, M.D., who recommended that Kevin have surgery followed by an immunotherapy called interferon. Interferon boosts the body’s natural defense mechanism against cancer and has been shown to delay recurrence. Kevin has now been cancer-free for more than a year. He is very hopeful that, should the cancer return, newer immunotherapies like checkpoint inhibitors will help him fight it.
Kevin spoke with us about his experience with treatment, about writing as therapy, and about how fighting cancer at such a young age has encouraged him to embrace life more fully.
CRI: How did you find out that you had melanoma?
Kevin: I had this really funky mole on my leg that was elevated. It was hard as a rock and itchy. I thought it was a mosquito bite, but when I looked at it, I was like, "Oh God." [Laughs.] It definitely looked out of the ordinary.
CRI: Do you have a history of cancer in your family?
Kevin: My grandfather died of melanoma when he was 36—that was in the 1960s, I believe—so my whole life, my mother had been very obsessive about taking care of my skin. She was always lathering me up with sunscreen at the beach, and I would squirm to get away. [Laughs.] I knew to go get it checked out, because I grew up with that.
CRI: When did you hear the definitive diagnosis?
Kevin: I got my diagnosis over the phone in August 2011. It was a surreal moment. Right away, I went into business mode and started scheduling doctor appointments. Some people fall apart right away. I don't; I fall apart later. I avoided telling my family for a while, but we eventually talked about it, and my mother kind of hijacked things and got it all taken care of for me. She was like, "No, we're going here. These are the best people." That's how we found Dr. Kirkwood and my surgeon, Dr. Edington.
CRI: Tell me about your first consultation with Dr. Kirkwood.
Kevin: I really liked Dr. Kirkwood. He had excellent bedside manners. He sat down, and the first thing he asked me was, "How are you doing?" He also wanted to know what I understood about what was happening. I thought that was phenomenal. That's not something a lot of people do. He let me give my take on the situation, and he didn’t interrupt and launch into his own interpretation of the scenario. He said surgery was going to be first.
CRI: How did the surgery go?
Kevin: When they did the lymph node biopsy, they found a microscopic bit of cancer in my sentinel node. They had to do another procedure in my upper thigh, which is even more disconcerting because it's called a "groin dissection." I'm like, "As long as my groin is still there..." They took out the rest of the lymph nodes in the area and they were all negative, so that was good. Dr. Kirkwood recommended that we do the immunotherapy interferon. He is the one who got interferon approved as a treatment for melanoma by the FDA.
CRI: What was your experience with interferon treatment like?
Kevin: Obviously, immunotherapy is a wonderful alternative to chemo. There are no long‑term side effects that are shown in the research. The only thing I was told I would experience is basically a year of feeling crappy. I went ahead and I did it, and I definitely felt crappy for an entire year.
CRI: What kind of side effects did you experience?
Kevin: So, in December of 2011, I started treatment. It was a very hard month. I went to the hospital Monday through Friday to get hooked up to the machine, start the IV, and sit in the chair with everybody in the treatment ward. I was staying with my great aunt in Pittsburgh, and I would come home to her place and sit at this desk in the guest bedroom and write despite having chills and fever. I'd stop for dinner, around 6:30 to 7:00. When I couldn't stay up any longer, I took anxiety meds and passed out. Then I woke up in the morning and I did it all again.
CRI: Did the treatment change over time?
Kevin: It got a little easier after that month. I did the interferon injections on Monday, Wednesday, and Friday for the rest of the year. It's a much lower dose than I got in the hospital, but it still affected me a lot emotionally. They said interferon can cause depression, and it definitely did in my case. I was very sluggish, and I didn't want to do anything. I basically lay on the couch under a Snuggie for an entire year.
CRI: You write a blog, and are currently shopping around a memoir about your cancer experience. Did writing help you during this time?
Kevin: Writing for me was a wonderful outlet, and I resisted it for a really long time. [Laughs.] It's like self‑therapy. I wrote my first story in first grade, so it's something I've been doing forever. I grew up in a very middle‑class, normal household, where my parents said, "You have to grow up and get a real job." I never really considered writing as an actual source of income until later on in life. That's what I'm doing now, and it's my goal only to do that.
CRI: Do you remember what your first story was about?
Kevin: My first story was called "Attack of the Killer Pizzas." It was about giant mutant pizzas that terrorized the city.
CRI: That seems very appropriate for a five‑year‑old‑boy.
Kevin: Yes, exactly. [Laughs.]
CRI: When you completed the interferon treatment, did your mood alter?
Kevin: The effects of the interferon are cumulative, so the more you take it the worse you feel over time. It just builds up. They told me it would take two months to get it out of my system. I was very unhappy and very obviously chemically affected by it, but it really wasn't until I stopped taking the interferon treatment that I realized how much it had affected my mood with anxiety and depression. It's hard to say exactly when I started feeling like myself again, but it took a lot of external factors to get me out of it as well.
CRI: What kind of external factors helped?
Kevin: My friend convinced me to come up to New York City and visit him. As soon as I got up to New York, I felt a lot better. I felt independent again. I felt like I was alive again. Moving back to New York and deciding to write, to pursue my goals and dreams, deciding that I had something to offer, and that I felt obligated to do so—that all made me happy.
CRI: You started dating someone soon after finishing treatment. Tell us about that.
Kevin: Maeve and I met three years ago, almost four now, at the Rubin Museum downtown. I felt such a strong connection to Maeve when we met, and knew that she was someone I could end up with, right from the start. I reached out to her at the beginning of this year, and what proceeded was a whirlwind of emotion, and a courtship to rival all courtships. Being together is probably the best part of moving on after cancer. But if I hadn't gone through it, I'm not sure I'd be able to appreciate how lucky I am to have such a wonderful girlfriend, and wonderful family, and amazing friends.
CRI: So cancer seems to have changed your outlook on life a lot then?
Kevin: If it weren't for all the bad parts of cancer, everybody would really benefit from it. [Laughs.] I hope I can use that perspective in the future— like not getting angry about things, letting things go, being able to realize what's important. Sometimes I find myself going back to my normal mode of operation, getting frustrated about commuting, etc., but then I remember, "Wait, you almost died once. What are you worried about?"
CRI: It’s great that you’re able to keep a positive mindset.
Kevin: Sometimes, there’s the shocking thought that this happened, and it's not necessarily over. It could definitely come back. It could happen again, and it could be worse. I worry about building a life in terms of my relationship. Even though we're really happy together, I have this thing that's hovering over my head. Is it fair to force someone else into that? I worry about it terms of my family and my friends, too, because I don't want to check out and leave everybody upset. I try very hard not to think like that, because with this new perspective, I realize that there's nothing you can do about it. There really isn't.
CRI: Does writing help with that anxiety?
Kevin: It's very rare that I'll sit down and be like, "I'm really excited to write this post about how terrible my life was at this point," but it really does help. As soon as you start writing, you get in the groove. The other day I started to write this new post, and I literally cried. But it's better than the alternative. You're getting out all of the emotions, all of the darkness, instead of keeping it in, and letting it build up, and letting it consume your life. I'm hoping that if a reader is going through something similar, they'll commiserate. Maybe it'll help them.
Kevin Lankes is a writer living in New York City. His recently finished memoir, Cancer Kid, is currently seeking a publisher. You can follow him on Twitter @KevinLankes and read his blog at www.lankeswords.com.