Like Being in a Hurricane “ For me, having cancer is a lot like being in a hurricane because everyone around you gets really emotional and worried and very tossed about with everything. But I’m like the eye of the hurricane. As some may know, it’s somewhat calm at the center. There’s a lot of emotion around me but myself, I haven’t felt it quite like everyone else.”

That’s how 18 year old Charlie Cote describes the emotional impact of having cancer. It all started two years before his 2004 diagnosis. Charlie’s pediatrician suggested that a surgeon look at a mole on Charlie’s head. Just to be sure, the mole was removed but everything looked fine. Life went on for Charlie and his two younger brothers who live with their parents in Penfield , NY , a suburb of Rochester . Fast forwarding two years, Charlie, now 16, was quickly gaining recognition as the lead vocalist of a popular rock band called FiveStar Riot. His younger brother Alex was the drummer and all was right with the world for the Cote brothers and their family until Super Bowl Sunday, when Charlie’s girlfriend noticed a bump behind Charlie’s ear. “We thought it might just be a swollen gland fighting off an infection, a little cold,” his father remembers. When instead of going away, it got bigger, Charlie was again referred to the surgeon who confidently said, “Oh, it’s just a cyst.” Easy to remove, nothing to worry about.

Not Just a Cyst

To the surgeon’s surprise, a simple little cyst was in fact a suspicious looking lymph node. Lab reports were immediately sent to the local children’s hospital where Charlie was told, “Looks like cancer but we’ll need the reports to be sure.” A phone call two weeks later confirmed the diagnosis – Stage III melanoma with metastases to the lymph nodes.

Malignant melanoma is the most serious form of skin cancer and also the least common. However, the incidence of melanoma is increasing at an alarming rate in the United States . While it can affect any age, there has been a trend toward discovery at younger ages (link to pie chart from website – Cancer Facts/Cancer overview]

Charlie says his parents reacted like most parents would. “They were kind of teary.” But of himself, Charlie says, “I just thought: Great, something else to deal with .” He says he didn’t get too emotionally involved. “It freaked me out but I didn’t break down or anything.” Instead, Charlie just focused on what needed to be done. “Let’s just do it”, he remembers thinking about getting started with treatment.

Charlie, with his parents, brothers, and girlfriend, Whitney

The Treatment Plan

The first step was intensive intravenous treatment with interferon five days a week for four weeks. Charlie also underwent seven hours of surgery for a radical neck dissection that removed 82 lymph nodes, as well as the jugular and arotid arteries on the left side of his neck. His family remembers not being prepared to see him following the surgery. “He looked like a cyborg,” his dad recalls. For Charlie, the after-effects of surgery were the worst. “They don’t really tell you what to expect,” he said referring to the severe nausea that aggravated his large incision causing great pain and making it impossible to eat for several days. By the end of the week, he began feeling more normal and was finally able to go home. While still receiving treatment, Charlie continued going to school despite an IV needle stuck in his arm and a pretty interesting scar that extends across the back of his head and down across to the front of his neck. That’s some scar! People stared, Charlie says, often asking “ What happened? ” wondering if he’d had a car accident, but he took it in stride. After just a few months, a biopsy showed that a new swelling on Charlie’s head signaled a local relapse. More surgery was required to remove three additional lymph nodes, creating yet another scar and more therapy. Though recovery from the second surgery was shorter than the first, Charlie was not able to finish his Junior year. With this new turn, Charlie completed his school work and exams over the summer and began six weeks of intensive radiation. So, instead of working normal summer jobs like most teens, Charlie and his girlfriend headed out each day together to the local cancer center for daily radiation treatment. “We made little dates out of it,” Charlie says. One lasting effect of the radiation is the loss of his hair on one side of his head but Charlie has chosen not to shave his head completely, trying to be creative about it. Some people say, “ Cool haircut, man.”, he says

. Trying to have fun!

And the Beat Goes On

Cancer didn’t stop Charlie or Fivestar Riot. Even while undergoing treatment, Charlie continued to perform with the band whose popularity at local clubs made them crowd favorites. Top critics like consistently give rave reviews: “ The guitar work is fantastic! The bass sound is superb, well-played…not a moment out of place. Vocals are great! Don’t want to leave out the drums because those are fantastic. named Fivestar Riot a Gold Artist, saying: “We love the dynamics and energy in your music. The musicianship is exceptional throughout – especially the lead and backing vocals.” “Unfamiliar Sky”, the band’s third CD, produced during the difficult months of Charlie’s treatment, clearly reflects Charlie’s philosophy on life – live each day with hope despite adversity and challenge.

Lyrics from Mischief and Mayhem (Sweet Sixteen) – cut 4 on “Unfamiliar Sky”.

Where are you going? Don’t leave, I’ll be there soon. I’ve got something to share with you. And every night we’re all just wondering how we’ll make it through tomorrow. Everybody knows that I’m in love with you and I don’t seem to mind at all. So come and kiss me, Sweet Sixteen. Youth’s not a thing will endure. Come and kiss me, Sweet Sixteen, I love you every day more. What is this love? Is it here tomorrow? I just don’t know. Can you say a day better than today? The best part is it’s not a dream. So come and kiss me, Sweet Sixteen. Youth’s not a thing will endure. Come and kiss me, Sweet Sixteen. I love you every day more. So here we are. Here we are, tonight. We’re getting on this train tonight. We’re getting off on just being alive.

What’s Next?

Charlie’s not done with treatment yet because recent scans showed that his cancer has spread to more lymph nodes and to his lungs. Fortunately, he was able to take advantage of cutting edge treatment at the National Institutes of Health in Bethesda , Maryland where he’s been receiving treatment with interleukin II. He’s also undergone surgery to remove the tumors in his lungs and lymph nodes. More battle scars! Depending on some further testing, a new investigational protocol might be next. Through it all, Charlie is still attending school and preparing to walk across the stage at his high school graduation, a proud member of the National Honor Society. Fivestar Riot is gearing up for its summer schedule and hoping for a big record label break. Charlie has some thoughts for other teens with cancer and tries to follow his own good advice. For starters, he doesn’t worry about the statistics. “ I’m not a statistic ,” he says. His best advice is to “ Take it one needle at a time.” He would tell another newly diagnosed teen not to think of things cumulatively. “ It does no good to think about all that’s ahead. Just think about today.” Charlie’s girlfriend Whitney offers these words of experience to other friends: “Lighten up,” she says. “You can still joke around and have fun.” She also found it helpful to learn as much about Charlie’s disease and treatment as possible. Just think about today.

Lessons Learned

The last year has been difficult but enlightening for Charlie and his family. He’s has seen his friends in a new light, grateful for the support of true friends who have been there when he needed them most and surprised by others who haven’t. Both he and Whitney look at things differently now, sometimes having little tolerance for the petty problems that upset their friends. But perhaps the most profound lesson learned is revealed by Charlie: “You find out how much people care. You see the goodness in people.”

Fivestar Riot – “Unfamiliar Sky”

To get your own copy of Unfamiliar Sky send $8 to:

Teens Living with Cancer 245 Citation Dr. Henrietta NY 14467

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