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 Helena
When, how and where were you diagnosed?
December 1989, Fairfax Hospital, Virginia. I had been having persistent stomach aches for over a month, as well as considerable fatigue; it was like having a never-ending case of the flu. A gastroenterologist who thought I might have an ulcer found that my blood chemistry was highly irregular. It turned out that the tumor was compressing my bile duct and the liver enzymes were being forced backward, causing the stomach aches and contributing to the off-kilter readings. I was admitted to the hospital at the end of November for CAT scans, x-rays, bone scans, and a biopsy. They finally identified it as non-Hodgkins large-cell lymphoma, stage III.
When did you finish treatment? Are you scheduled for follow-up appointments?
April 1991. I don’t have a consistent follow-up plan. When my last internist left town, I went back to my oncologist, but his specialty is pediatrics and I need to find another follow-up option. I do get mammograms every five years, as well as physical check-ups from an internist.
Treatment: Chemo? Radiation? Surgery? Side effects?
Chemo (CHOP-V), and 3,300 cGy to the chest. I had a chest biopsy and surgery to install a central line, but no surgical treatment of the tumor itself.
In 2000, I developed a pericardial effusion secondary to a strep virus. It was initially misdiagnosed because my pericardium had been scarred by the radiation, so it didn’t stretch into the typical profile doctors use to identify the effusion. The cardiac surgeon cut a window in the pericardium and drained out the excess fluid, so I spent about a week in the cardiac care unit.
What long-term effects from cancer treatment have you been told about?
Potential heart problems from the adriamycin, potential kidney and liver problems from chemo overall, a high chance of early menopause and difficulty having children, increased risk of breast cancer, and reduced lung capacity because the radiation probably caused some pulmonary fibrosis.
Are you dealing with any physical, emotional or social problems since you finished treatment?
Yes. Physically, I get more tired doing aerobic activity than I should; running or other high-intensity aerobic exercises are very hard on me. I’m also still self-conscious about the biopsy scar and am unreasonably displeased about being stuck with the radiation tattoos.
I’m also working with a therapist to resolve some lingering emotional problems. For a long time, I acted as though cancer hadn’t really affected me, but I find that when I’m stressed about other things in life that I often flash back to being sick.
What are you looking forward to as you look into the future? What are you most afraid of?
I want to travel more, although having cancer has made me more leery about going to countries without strong medical systems. I love getting to learn new skills, so life is a constant series of challenges, and I look forward to taking classes and learning to do things well.
On a physical level, I’m scared of pain, but I think that my fear of letting other people down is worse. I definitely felt that I had burdened my family and friends by getting sick—logically, I know that’s ridiculous, but it’s been hard to shake the feeling.
Did you feel different about your abilities after cancer?
Physically, yes, absolutely. Before I got sick, I had been taking martial arts six days a week, working out up to an hour and a half each day. When I went back after finishing treatment, I couldn’t get through even an easy class without blacking out. It’s been hard for me to cope with the change, but I’m working on finding other avenues for staying fit.
Who
are the people closest
to you – family, friends,
girlfriend/boyfriend?
Definitely my family. I think I would be close to my parents anyway, but going through cancer with their help cemented the bond. My sister was 12 when I was diagnosed, and she did a pretty good job balancing adolescence and the whole spectrum of emotions that kids go through when their siblings are sick. We don’t talk about it much, but I’m constantly amazed by how well she managed.
Why would you like to be a part of this documentary film?
When I was diagnosed, I violently resisted being called a cancer patient; I thought of myself as a 14-year-old girl who had a variety of interests, friends, hopes, and failings—and who happened to have cancer. I didn’t want to meet with other teens in my situation, because I thought that would mean admitting that I was somehow like them. But once I did meet with a teen group, I realized that having the support and company of people who had gone through similar experiences didn’t mean defining myself as a cancer patient, it meant opening myself to new people who knew what it was like to dread spinal taps and make stupid jokes about baldness. The importance of that kind of support was one of the most valuable things I learned, and I hope that this film would be an opportunity to share that.
Also, I’ve realized in the past few years that while cancer isn’t a part of my daily life anymore, leaving the experience behind isn’t simple. It’s important to me that teens with cancer know that they can live a happy, healthy life after treatment—and that they may have to continue dealing with its effects on their lives.
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