I've known a lot of people who have had cancer and have either won or lost the battle. It's a scary thing. I know a lot of books feature characters with cancer including The Fault in Our Stars and A Monster Calls but are these really accurate? I'm honored to have ZitaAnne on the blog who actually volunteered to talk about her experience. Please welcome her.
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What type of cancer did you have?
I had Stage 2 Nodular Sclerosis Hodgkin’s Lymphoma. It is a cancer that is in the lymph cells of the blood. The staging just means that my tumors were above my diaphragm and the sclerosis means once the cancer was dead, the tumors themselves would remain as scar tissue.
My diagnosis meant that I had to have four injections of three drugs every two weeks for eight weeks. Every other two-week session I would be on a steroid acting as a third chemo drug. Then I had 17 days of localized radiation to my chest and neck area. After I received a break so the chemo wouldn’t mess with the radiation and then it was back to chemo for another four rounds, each two weeks apart.
How did you feel when you were diagnosed with cancer?
I was diagnosed when I was 15 years old, so I was definitely angry and terrified. I was angry that out of everyone I knew, I had to get it. And I was terrified because this was my one fear. I just felt that I could have done more with my life at that point and was upset that that might have been the end. However, once I went through the initial week of diagnosing, scans, tests, and chemo, I realized that I couldn’t change the situation, so I changed my outlook on it. That made things so much easier to handle. In addition, I was so happy that my sister hadn’t been diagnosed and that it was me. That was the hardest thing; my family had no idea what I was going through so keeping my spirits up helped them more than anything.
What did having cancer feel like?
One of my first surgeries was central line placement. These are the permanent IV tubes inside the body to help get liquids in faster. The doctor placing them was super awesome though, making sure to put them under my bra strap so I could still be comfortable during the day. The tubes ran from the outside of my body (with valves that could connect to IV poles) all the way into my body through the major vein that feeds into the heart. It was okay for the first couple months, but eventually, the stitches throbbed constantly. There was nothing to do for that pain so it was easier to compartmentalize it.
Chemo itself wasn’t too bad. When anything is injected through the veins, you can always taste it on your tongue. I have no idea how, but for me it was always metallic. Every time anything went into my lines, it had to be flushed with a saline solution and that tasted different than the chemo drugs.
The first half of treatment I basically felt fine. It was only after the fifth round that I began to feel sick most of the time. Also, the steroid I was on made me crave salty food all the time, so I gained a lot of water weight in my face that I’m still working to take off to this day.
How did cancer affect your day to day life?
At the height of chemo, I was on at least five other medications all taken twice a day. During the weekends (I had chemo on Thursdays), it would go up to seven because of anti-nausea meds. To this day, I’m still on three at all times. I also had to clean my central lines every day with a blood thinner. Back then, my immune system was almost completely offline and I had to stay at home.
I was a sophomore in high school, so I had to do all of my school work at home. The school systems actually have professionals that are liaisons and bring homework back and forth. I was lucky, kept all of my coursework, and still managed to finish on time with an A. Didn’t have much else to do all day after all.
In addition, I was on the constant risk of infection, so one of my parents had to be with me at all times. My mom was lucky to be able to take extended work leave, and my dad was able to as well in order to keep me safe.
What was your experience with cancer treatments?
When I started treatment, I had no idea what it would entail. I just refused to look it up and scare myself. With treatment, I would show up at the hospital – all outpatient for me – and have vitals taken, then an appointment with my oncologist, after which came the dressing change. Dear Lord did those stress me out. Basically, there was a massive bandage that was on my lines all the time that had to be changed once a week. Pulling the plastic always hurt. Then I would have fluids ran so I didn’t feel so sick, then anti-nausea meds. Finally, it was on to chemo. One took twenty minutes to run, the other two were so small they could be injected easily. Those two small ones always instantly made me feel sick. We live 2 hours from my hospital, so I would get some Benadryl and sleep the whole way home.
Do you have any other details about your cancer experience to add?
If anyone is wondering, I was able to go out of the house, just with a surgical mask on. In fact, I went on a trip with the Sunshine Kids Foundation to New York City, meeting tons of kids from around the country all around my age and all having been diagnosed with cancer. Seriously humbling and seriously fun. Plus, I did have a Make-A-Wish trip. I took my family to Hawaii a year after I was announced in remission because we all needed a vacation. It was absolutely amazing.
In addition, I want to make this clear: I do not regret what happened. If I could have lived my life without cancer, I would have hands down. However, that wasn’t what happened and now I wouldn’t give up the experience for anything, even though I have had friends die from this disease and see my oncologist devoting her entire life to her profession. It changed who I was as a person, I carry my physical scars every day, and I wouldn’t be who I am without it.
What are some stereotypes about cancer that irk you?
The biggest stereotype that bothers me is that all children diagnosed with cancer are younger than ten. I was 15 and right in the line of when my cancer hits normally. Those that are depicted as older teens seem to always feel bad for themselves and/or mope around. I never felt that way, so I wished people were more informed on that aspect. In addition, there are numerous types of cancer, not just leukemia and I never lost all my hair. I lost a lot, but not even close enough to make a difference. I made jokes on treatment (still do) and I’m always willing to talk to anyone who asks about what I went through; I never get upset when people are curious and I wish this disease didn’t carry so much of a stigma.
What media portrays cancer inaccurately be it a movie, a book, or a TV show?
Any media that has characters moping around has never met an actual cancer patient. Sure, we all have down days and I can’t speak for all of us, but we are in a fight for our life. We don’t want it to control every part of us. I’m sure someone can relate to The Fault in Our Stars, but I don’t. I’ve never been able to get past the first page or so. Believe me, when I say, I’ve been around numerous kids with cancer and no one acted like that. I don’t like how Dana Scully’s cancer was handled in the X-Files either. Danno’s son in Hawaii 5-0 also falls into the realm of childhood cancer that people expect but isn’t always the case.
What media portrays cancer accurately be it a movie, a book, or a TV show?
I have yet to find anything in media that I can relate to and yearn for the day I do. I am a writer myself and am hoping to fix this.
Who are your top three favorite characters who have struggled with cancer in books, movies, or shows?
Again, I don’t even have a story I like so finding characters is even harder. I wish that writers would talk with actual patients and survivors since each one of us has had a unique experience.
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| Conor's Mum from A Monster Calls |
Are you interested in participating in this project? Shoot me an email at howellvictoriagrace(a)gmail.com.
Do you have any characters that have cancer? Did this inspire you to write a character with this illness? Do you have or have had cancer and you have further input? Feel free to share! Do you have any questions for ZitaAnne? Be sure to thank her!
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