THE BLOG
08/07/2014 04:38 pm ET Updated Dec 06, 2017

Club Cancer's New Tool in the Fight Against Young Adult Cancer

I recently participated in Club Cancer's new discussion series, "The Survivor Dialogues." Club Cancer is an advocacy organization focusing on young adult and teen cancer awareness. Founded by Partick Betters, a survivor of Non Hodgkin's T-Cell Lymphoma since the age of 17, the organization is a growing resource in the push to for cancer equality. The Survivor Dialogues feature discussions with young adult and teen survivors of cancer, with the goal of touching on issues that are unique to the age group's experience with the disease. You can read more about Club Cancer and Patrick here. Below is the first installment of the Survivor Dialogues, reposted with permission, featuring myself and Patrick as we discuss issues faced through treatment and beyond.

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The Survivor Dialogues: 1

I was on Facebook recently and saw an article on The Huffington Post from a young adult cancer survivor that is making his mark in the cancer world. His words really had an affect on me in a way not many people have, and I knew I had to reach out. I had an idea for a project for quite some time now, something I hadn't seen before, but something I knew was necessary for myself as well as many other teen and young adult survivors. The idea was simple yet powerful: to create a conversation between myself and another survivor, and that conversation would be public. It would be a conversation open to the world, and it would be open to the world for the sole reason of helping people understand. Whether it be helping someone who hasn't been through the cancer tragedy themselves but wants to understand a little bit more, or a survivor who has felt isolated in a public place at one time or another and just wants to know if anyone else feels the same way. I wanted to create this and just wasn't sure who would be open enough to make it come into fruition. Fortunately, I took a chance and reached out and the results couldn't have made me more proud of this project. I am excited to say that this is only the beginning.

Patrick: Hey Kevin, I'm so stoked to be able to talk to you and open up to someone else that actually understands the experience of cancer at a young age. Can you start by telling me how old were you when you were diagnosed and what was your diagnosis?

Kevin: I was diagnosed with Stage 3 melanoma at the age of 25, just a month before my 26th birthday. What about you?

Patrick: Hey, same stage! I was diagnosed after waking up suffocating in the middle of the night and my parents rushing me to the ER three days after my 17th birthday with Stage 3 Non Hodgkins T-Cell Lymphoma. It was crazy because I had just started my senior year and this was not even close to my mind.

How did the doctor's words strike you at first? For me, it was a state of shock and uncertainty, especially being 17 and never having met another teenager that had been diagnosed before.

Kevin: Getting life-threatening news is one of the oddest experiences I've found in life to this point. Hearing words at that level of awful, and knowing, or at least suspecting, that they relate to you creates a series of surreal sensations. All of the hair on my body immediately stood up, and I had painful goosebumps all over. I don't really remember all of the conversation, other than the doctor's tone, which was a mixture of pity and nervousness. It sounded like my life was over. And at 25, my independence had just begun. I'd just wrenched free of my parents and had a couple of short years of real solo time. All of that was yanked out from under me very suddenly, and I had no idea what to do.

Patrick: It really is an odd experience. I don't remember many exact details about the initial conversation, but I do remember a certain sense of surrealness; a "this can't be true" feeling came over me. I'm sure you told your family right away, but did you tell your friends too? Did you contemplate telling them or how you might do so?

Kevin: I actually tried to avoid telling my family. It didn't work out, because I'd posted a pretty huge clue on Facebook, and my mom started calling me non-stop until I picked up. Telling my family and friends that I might be dying was one of the hardest things I've ever done. I called a lot of important people in my life, because I felt they had the right to hear the news from me personally. And I made a few posts on Facebook, and generally people were very supportive. Did you tell your friends?

Patrick: I bet for one her heart sank, but two, she must have been pretty mad at you for having to find out on social media. I had no choice about my parents finding out because they were there, but I definitely tried to control what I could about my friends finding out. I actually only told one friend the day I was diagnosed. My friends on the wrestling team were blowing up my phone asking where I was because I never missed school. I found out later that they were all really pissed at my friend because they knew something was wrong but she kept her word and didn't tell them. They found out the next day, though, and I had a hospital room with about 30 people in it. I definitely felt support throughout the whole experience, but still felt isolated a lot of the times. After being diagnosed, did you notice your friends separating themselves from you or being different towards you in some ways?

Kevin: People definitely treat you differently. I have a core group of friends from high school who were with me through the whole ride. They came up to see me all the time, and without them, I might have actually lost my mind. Other people flock to you out of a need to be helpful and comforting, which is nice, but sometimes not altogether genuine. You find out who people really are very quickly, and how much that affects your judgment/appreciation of them, and where they fit in your life. Was your experience similar?

Patrick: I felt the same way. A lot of times people just don't know what to say or how to say it and it comes off as fake, but I always appreciated the effort. I had a very similar experience with finding out who people really are. I found myself reading people and their mannerisms extremely well after living in a hospital and having visitors constantly. I hated my friends or anyone giving me sympathy so I learned pretty quick how to comfort them instead of them trying to comfort me if I knew they felt uncomfortable.

When I wasn't with them, sometimes I was thinking about how their lives would be without me. It made me feel like I was going to miss out on a lot of the things I had once thought to be guaranteed. How often did you think about your death or all of the things you wouldn't ever get the chance to accomplish if your battle with cancer was lost?

Kevin: I thought constantly about my own death. When you have a terminal illness, what else is there to think about? I thought about how I'd leave things, mostly. How could I make my exit while sparing my loved ones from all the collateral damage? Thoughts about accomplishments haunted me too. I wanted to make sure I at least tried to leave a legacy. So I started writing. And, with a potentially rigid timeline in place, I proceeded to write two books during treatment. What kinds of things did you worry about missing out on?

Patrick: Exactly! I always wondered how hard it would be for my parents. My mom wears her heart on her sleeve and I hated the thought of how much it would affect her if I didn't make it. I see that a lot in survivors; the importance of leaving a legacy. I had the same worry. I wanted to make a difference in this world and at times felt a time crunch to do so. I plan to write a book as well, but for now I have about five notebooks full of writings from throughout, and after treatment. I worried about never graduating high school, graduating college, getting married, the opportunity to have my own children, and the chance to make my mark on this world. I always imagined that life just included those things, never had I been so wrong. I felt like I had a brand new life when I heard the word "remission."

Do you remember what that news was like?

Kevin: Remission: It's interesting, because my doctors were protective of me as the situation unfolded. They didn't even stage me, I had to do that myself. The only diagnosis I ever saw was on paper when I was handing off my documents to schedule a new appointment. So I never heard the word remission. I didn't even really know it applied to me. Either way, I'm incredibly glad that I'm in remission, even if no one ever mentioned the fact. I'm guessing you had a more normal conversation about it?

Patrick: My doctor was also very protective of me in regards to which info she would and would not give me, but remission was a word I could tell she was proud to tell me. She definitely let me know the details of my diagnosis and how careful I had to be now that I was in remission, but I also don't consider the day I was NED (no evidence of disease) as the day I went into remission. I consider it the day that I was done with chemotherapy, which was Jan. 21 2009.

Since becoming a survivor, do you still think about cancer coming back?

Kevin: I do. But not as much as time goes on. It's not so strange that people seem to strive to return to a baseline of normalcy after something traumatic. A lot of factors go into this, but for the most part I've been able to carry on in that respect. Obviously it's a new baseline now, one seriously affected by all that I've been through. But I still do self-checks in the shower off and on, and I worry when I find something I can't explain. But I've lost most of the hypochondria that often comes with a cancer diagnosis.

Patrick: I agree, as time goes on the thoughts have slowed down a bit, but they are definitely still there. Self-checks are a must for my own sanity, but my heart still prematurely skips a beat whenever there I feel anything different. The hypochondria was a lot worse for me as soon as chemotherapy stopped. I felt like the crutch of chemotherapy was taken away and now there was nothing to hold cancer back. Now I am almost too comfortable with new symptoms, but at times I am beginning to feel normal.

Becoming "normal" in society has been really difficult for me since survivorship. I feel like I do not value the same things as everyone else at times, and being a young adult now, it's hard to
enjoy most of the superficial aspects of society. Do you ever feel the same way?

Kevin: I felt that way for a long time. Trauma is a powerful force in life, but even so, the memories of what it taught you begin to fade. And I don't have any doubts that I've taken several important lessons from my experience. But I worry about whether or not it's enough. There are only so many important things in life, and I had a huge and painful reminder of that. But everyday life creeps in after a while, and you have to hope that you're forged out of better stuff now and can deal with it in all the ways you promised yourself you would. For a long time I felt like I was living between two worlds: one that was "real" and had consequences like life and death, and the other that everyone else occupied, that was trivial and full of reality TV. I feel like I've been able to successfully merge my worlds now, and I think that's best. It's healthy, and I feel very optimistic about it.

Patrick: That is the perfect way to put it. I felt trapped in between the two worlds for a long time and I'm just now starting to feel like the two worlds are coming together and I can now live in my version of the world that combines the two. Living in the world of survivorship, there is something about the term survivor that doesn't sit well with me. I don't like to think of the children I have come across as not survived. Sure, cancer took them from this world, but it is because of their memories that I continue to fight. I am remised of a horrible disease, but I reminisce often.

Kevin: Have you started dating after cancer? I found myself in a period through treatment where I strived for uber-normalcy, and tried to talk to as many potential dates as possible, even though I had no self-esteem to back it up. I've been dating the same girl for a year now, but it felt odd in the beginning even with her.

Patrick: I have. It was really hard at first, and by at first I mean for a few years. I still had so many self-doubts, and I feared hurting someone for a long time. I didn't want to leave any girl as "the girl that's boyfriend died." It sounds crazy to think about now, but that is what I feared. So, I dated girls that I had no business dating, girls with issues that I just wanted to fix because I couldn't fix my own. I was damaged and there was nothing I could do about it, but if I could help someone else that was "damaged," then that is who I would go for. It makes no sense looking back, but I guess that is why I chose psychology -- to make it all make sense. I am now dating someone that hasn't gone through the same experiences I have, but I feel understands me and actually WANTS to understand me better and it is a good feeling to have. There was a little bit of an adjustment period but getting myself out of my comfort zone and putting myself out there has been worth it to say the least.

Kevin: Where do you go for checkups? I did my whole treatment in Pittsburgh, even though I live in NYC, and my family lives in central PA. I've been driving out with my family for checkups, and every time I get a sense of foreboding and go into a brief but pretty depressed state. I associate a lot of things with that trauma now.

Patrick: I was treated and go to check ups in San Diego. I lived in Temecula during treatment, but moved to San Diego for college and have finally begun going to my checkups by myself. During treatment my mom and dad were with me for everything, but at some point I felt like I had to regain my independence. I needed them for everything during treatment, and I felt so useless most of the time as some days I wasn't even able to sit up or even walk to the bathroom. It's funny though because now that I go to checkups on my own, all of the hospital staff still ask where my mom is.

Kevin: There are a lot of things that I had a genuinely hard time looking at or being in the same room with after my experience with cancer. During treatment, I spent a year on the couch at my parents' townhouse. It took me a long time to be able to sit on that couch again without wanting to cry. Do you have anything like that?

Patrick: For me, there was a lot of foods that gave me that experience. To this day I can't eat Campbell's Chicken Noodle Soup because there was a two-month period where I was not able to keep any food down and almost needed an NG tube, but they tried giving me soup constantly and I threw it up every time. The smell of it still gives me chills. Also, any time I go back for checkups I have to stand outside of the hospital for a minute and just look at it. So many emotions come rushing back when I see that place, and sometimes I start to get dizzy or even a flashback. I never really told anyone about it before, but the first few times I went back to the hospital after being pronounced in remission I went into the bathroom and would just let the tears flow. I had to take a minute to re-convince myself that I was actually cancer free before I could go in to get my blood work done.

Patrick: Well Kevin, I'm so glad we had the opportunity to talk. It's so hard sometimes feeling so alone in a world full of people. Sometimes I wish everyone could understand the way I think or the way I feel, but then I remember that I don't wish that, because if everyone understood it would mean they had to have experienced the pain and tragedy that is cancer. I am forever grateful for you feeling comfortable enough to open up and I look forward to seeing all that you accomplish in your life. Thank you again.

Kevin also has his own website, www.lankeswords.com, feel free to check it out!

I hope you guys enjoyed this as much as we did.