What is it like to be told you have cancer at age 11, go through two and a half years of aggressive treatment, and come out the other side, cured at 19?
"Be prepared to be the angriest you'll ever be, as happy as you'll ever be and as nervous as you'll ever be," Emily Capisciolto would tell children facing what she did eight years ago.
• "Be prepared for emotional and physical changes."
• "Be thankful for small victories along the way, because the big picture is discouraging."
• "Remember, the only chance you have to get better is to go through it."
Her recommended must-read: "The Fault in Our Stars." A New York Times No. 1 bestseller, author John Green's main characters are teenagers with cancer.
Emily says simply, "He gets everything right."
Diagnosed with Acute Lymphoblastic Leukemia in fifth grade, Emily, now 19, paid her last visit to the After-Care and Transition Clinic at Helen DeVos Children's Hospital on July 25.
March 3, five years since the end of her treatment, she was considered cured.
During chapel at Unity Christian High School, just days after being pronounced cured, Emily talked about her experience. Here are excerpts:
"Chemotherapy, by definition, is poison. The doctors had to put a bigger monster in me than the one that was currently taking over my body. This caused me to get much worse before I started getting better.
"I fought my nurses about taking the 25 different colored pills set on my bedside table every morning and evening. I fought my parents on taking walks around the hospital to keep myself moving and (to prevent) the chemo from settling in any one place and damaging me internally. I fought anyone who tried to let visitors see me. I fought the pain that was only getting worse. I felt scared, angry and regardless of everyone there trying to help me — very, very alone. …
"The next couple of months were filled with constant hospital visits, hours of lying on my couch, daily chemotherapy and stomachaches, and intense mood swings.
"Treatment made me sick and it hurt. Constant shots and treatment that had side effects, and then the drugs I would take for those side effects had more side effects. Every visit there was something else to worry about or dread. …
"One of the most heartbreaking things during treatment was losing my hair … twice. It was just another reminder of what was really going on. …
"The steroids I was on caused me to gain a lot of weight, mainly in my cheeks and stomach. This, along with losing almost all muscles in my legs and arms, caused me to look very unbalanced. There was no way to hide my sickness anymore, and that sucked. I just wanted to be normal with my friends, or at least appear normal. Now, neither was possible. …
"More than once, I told my parents that I couldn't do it anymore."
How has cancer changed her?
"Some things that are scary to others are not to me. I can relate to people who are going through anxiety, depression or anger and have conversations of substance with them about it."
Ultimately, Emily and her parents, Ken and Kay Capisciolto, credit their faith, faith community, medical team and family for getting them through.
"Life inevitably comes with hard times," Emily wrote.
"Times when you just want to break down, or give up, or hide. Times when you feel completely alone. It is OK to feel that way, and it is OK to be angry with God. Just remember that despite feeling alone, you never really are."
Sue Schroder, former features editor for The Grand Rapids Press, was diagnosed with non-Hodgkin lymphoma in late 2009. Email her at livenow.ss@gmail.com.
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