Riding the Cancer Coaster: Survival Guide for Teens And Young Adults
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The Not So Glamorous Life of Hospitalized Teens

9/18/2014

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With all of the teenage/young adult cancer-related media coming out these days, from The Fault in our Stars book and movie to the Chasing Life TV show on ABC Family, I was wondering when someone would begin to publish some commentary on the validity of what these productions portray.  

When I watched The Fault in Our Stars, I thought it was a wonderful movie. However, I did not appreciate the fact that both Hazel and Gus were made to look so healthy and so mobile, despite the severity of their illnesses.  Then there is Chasing Life, in which too much irrelevant drama masks the real challenges faces by young people with cancer.

When looking at either of those productions, I am frustrated by the inaccuracy. But my bigger issue with them is that they were even trying to portray the life of a teenager or young adult with cancer.  I think it is close to impossible to incorporate the never-ending roller coaster of unimaginable challenges and incredible successes that come along with going through cancer treatment as a young person.  That journey is different for each of us too, it is not some homogenous experience.

That is why I was really happy when an article from the Washington Post came across my Facebook news feed and the title was: “Hollywood has it wrong: I’m a teenager with an illness, and it’s not glamorous at all.”  I encourage you to read the article here:  http://www.washingtonpost.com/opinions/hollywood-has-it-wrong-im-a-teenager-with-an-illness-and-its-not-glamorous-at-all/2014/09/12/b9154a7e-38f9-11e4-8601-97ba88884ffd_story.html

The author of the article is a young adult with a serious illness, and therefore a reliable source I think.  More importantly, she makes a truly awesome statement encompassing my own reasons for not liking media portrayal of teens and young adults with serious illnesses.  This is what she writes:

“In some ways the show’s faux-realism could be considered positive. I understand the power of portraying sick teenagers as “normal.” No one should be defined by his or her illness. However, I would be lying if I said that my disorder did not shape who I am. Although my condition is under control, it is something that is always present, that I will have to struggle with. Yes, I am more resilient and thankful for the life I have. But I would give up that gratitude if it meant that I could have never been sick, because, along with newfound strength there is emotional exhaustion. Aside from feeling horrible physically, I became more guarded, unwilling to let even my closest friends know how I was coping. And there is the constant fear that my disorder will get worse again, that I will lose everything I have worked for.”

Like she says, it’s great to emphasize that teens and young adults who are seriously sick should not be defined by their illness.  Then, she turns it around completely with the brutal yet utterly honest truth that none of those movies or shows include: just because we all want to stay positive and our lives have been positively impacted by the people and experiences that were part of our journey to recovery does not mean that we will ever feel “normal” or that we will ever totally recover.  In my own case, I love the life I am leading now and the things I have been able to do thanks to the people I met and experiences I had during my relapse treatment.  However… I will never be free of cancer because I will always be slightly afraid of another relapse, I will always be reminded of the impact it has on a person’s life because I will always know someone battling against it, and I will never be entirely certain of my future because my treatment may have late effects that do not surface until over a decade from now.  

So, I look forward to a day when a popular book, movie, or TV show will portray the life of young people with serious illnesses in a realistic way: representing both the hopeful resilience we possess amidst the not-always-positive realities we face.  I think it would be really cool to have something like that available so as to help people really understand the lives of teens and young adults who have or have had a serious illness.  Even though I have finished my treatment and moved forward with my life, I will have blood tests each year and remain friends with other cancer survivors.  So, cancer will always be part of my life in some way.  There have been so many times that I wanted to tell my whole story to the people around me so that they would understand me: why I like to go out but not get drunk (because that would be really bad for my already worn out liver), why I like to smile and laugh as much as I do (because I had so much to be so sad about for so long and now I hate being sad), or why I don’t like to wear a bikini like everyone else my age (because I have stretch marks and scars that make me uncomfortable), or why I might be really quiet one day (because a friend of mine going through relapse treatment is not doing well).  

That being said, in this blog, my main goal is always to encourage a positive attitude and hopeful outlook on life because I know it is crucial to combat all of those fears and concerns I just listed.  I do not let my past medical history define my current life in any way, and neither should you.  But, that does not mean it is not part of your life and that does not mean you need to ignore it.  There is a big difference between coping and ignoring: if you ignore something you pretend it isn’t there, but if you cope with something you recognize the influence it has and attempt to coexist with it in a way that it no longer causes you discomfort.  For me, learning how to cope with life during and after cancer treatment has been a continuous learning process. It is the lessons I learn along the way that I like to share with you here.  

My most recent life-after-cancer-lesson has been to continue to find new ways to cope.  Along the way, I have found so many ways to help myself stay positive and not let cancer affect me.  Yet, as I progress through life as a survivor, I am realizing that cancer can affect me in an ever-growing number of ways and when I am impacted by it in some new way, I find myself totally unprepared to cope.  One of my new favorite coping/distraction techniques is reading something interesting and writing about what I read.  Processing something I read, especially if it is related to psychology or cancer, helps my mind to process how I feel (oddly enough).  That’s kind of what happened, accidentally, with this article.  I was feeling really bummed for a friend of mine who is facing some serious cancer treatment challenges and, as I was scrolling through my newsfeed, I came across the article.  Suddenly, I had something to think about and analyze!

So, to get you started on your own analysis, I would love to know what you think!  It would be awesome if you share your thoughts on the article and anything on your mind that is related to it by commenting below!

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Riding the Cancer Coaster is taking an International Turn! 

9/2/2014

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This is a very exciting post for 2 important reasons: 
  1. I am writing it from my desk at Maastricht University, in The Netherlands, where I am studying abroad for the next 4 months!                                       But, more importantly...
  2. I am honored to unveil the project of an awesome young author, who is doing something incredible for the adolescents and young adults with cancer in Italy, and across Europe.


So, this is officially "Riding the Cancer Coaster" - European style!

Since ending my cancer treatment, and living life as a survivor, I have sought to support adolescents and young adults with cancer in as many ways as possible.  Yet, I never realized I was only focusing on those in the United States.  

I never thought to look beyond that, to the needs of those young cancer patients and survivors in other parts of the world.  That is, until, a few months ago, I received an email from a young woman in Italy who had found my blog.  That young woman was Rebecca Domino, and I soon found out that her work as a writer had led her to learn about the specific challenges faced by adolescents and young adults with cancer. But, the truly amazing thing was that she was attempting to DO something for that population of patients and survivors that I had not really noticed.

With that, I am so excited to introduce Rebecca and share her amazing new project here. 

Hi! My name is Rebecca Domino and I am a 29 year old emerging writer and journalist from Italy.  I’m here today to tell you a bit about my new project/website “Adolescenti e cancro” (“Teens and Cancer”).  It is based in Italy but will hopefully become an international online meeting point for teens and young people around the world who have or have had cancer. It doesn’t matter if they’ve just been diagnosed, if they are in remission, or if they have a terminal diagnosis.  

Regardless of  where they are from or where they are treated, we want to get all  of these young people involved. I think my website can be particularly helpful to those who are (or were) treated in adult or pediatric wards and may not know someone close to their own age who actually knows what it is like to go through cancer treatment.

When I talk to people about my website/project, they often ask me “Why did you set it up?” and I understand their curiosity since I’ve never had cancer myself and I don’t personally know any young person who had to go through that kind of experience.  I do, however, know older people who have had cancer: some who won their battles and some who didn’t.

The inspiration for this new project of mine all started with one of my novels… Writing has always been my biggest passion and in January 2014, I self-published my first book called La mia amica ebrea (My Jewish Friend).  The novel talks about a less popular side of the Holocaust.  Then, on in May 2014, I self-published my second novel, Fino all’ultimo respiro (Until the Last Breath).

That is the novel that changed my life.  The idea for the novel appeared in my mind out of the blue and I found myself writing about teenage cancer, a topic I’ve never really thought about before. The novel is written from the point of view of Allyson, an average 17 year old Scottish girl whose life changes when she befriends Coleen Hameldon, a girl her own age who’s living with leukemia. 

Before I start off writing my books I always do research about the topic I’m going to write about.  So, I did that for “Fino all’ultimo respiro.”  I looked for medical information about leukemia (symptoms, treatments, etc...) and then I read, watched, and listen to stories of teens and young people who have or have had cancer.  I was blown away by them! I was prepared to read and hear sad stories about death, pain and any kind of negative feeling such as anger, disappointment, and “why me?” questions.  But, strength, courage, smiles, altruism and love for life outweighed all the negative emotions. I’ve always been an introspective girl, I know life is a miracle, I’ve never taken it for granted.  I always did my best to realize my dreams and make the most out of every day I’m given on this Earth.  But, reading and listening to these stories led me to ask myself how can these young people can think and act that way when life has thrown such a hard thing on them? Those stories were the motivation for my novel and are the reason why I decided to give it away for free to any interested reader, encouraging my readers to donate what they can to Teenage Cancer Trust (UK) instead.

While that’s how things began, I felt I had to do something else, a project I could carry on for years and hopefully for the rest of my life.  I know some countries, like the UK, have a great healthcare system with many wards especially made for teenagers.  But, not all the countries are like that.  For example, here in Italy, we have a few wards for teens and young people with cancer.  Yet, I think they are so important and the work they are doing is fundamental.  I think we all should work together to encourage many other hospitals to fund, open, and maintain this type of specialized teenage cancer ward (and to link them with each other through the support of a charity that specifically cares for teens and young adults with cancer).  I think each Italian region should have at least one of these wards and ALL teens and young  people with cancer should have the right to be treated in such places, where the staff cares about them as teens, not as adults or children. 

I think to do that we all need to talk about teenage cancer more and more, until all the people realize the importance of such wards and the necessity of providing teens and young people around the world with the proper care and services from the day they hear the words “you have cancer” to life after treatment.  I also think we should all act about the urgent situation of teens and young people who live in less fortunate countries, who have little or no access to medical care, and may not know much about cancer….but that’s another thing.

So, that is all part of why I created this website/project.  I want to do my bit in helping these teens and young people have a better quality of life.  As I said, my project is especially aimed at those who are not or were not treated in wards especially for teenagers.  To provide them with a good social support system, they can use the website to connect with other young people in similar situations (and talk to them through email).  Also, they can read stories from other patients and survivors, watch their videos, take part in our initiatives, and send their own material to be shared on the website so they can help others! 

I want my website to be free of any kind of barrier, I want it to be international, I want young people with cancer to find friends close to their age who can actually help them, who can actually understand them. 

The website has many other goals as well. These goals include informing Italians (especially young people) about the 5 main symptoms of teenage cancer, the importance of prevention, and knowing your body and checking it regularly.  We want to encourage people to become blood/bone marrow (stem cells) donors, we want to organize initiatives to raise awareness of the importance of support for teenagers with cancer and we want to provide Italian teens and young people with cancer with free gift boxes upon request... I like to say that “Adolescenti e cancro” is made both for and with teens and young people with cancer, and I sincerely thank all the young people that – even before the website was launched – helped me by sharing their stories with me, making videos for the website, and generally supporting my project.

I feel honored to have the chance to do something for these young people. They have taught me so much more about life and I’m sure I’ll bring all these lessons with me, and when my day will come (I hope it’ll be when I’ll be very old because I still have a lot of things to do!) I’m sure I’ll have those lessons in my heart and I will have true gratitude for the life I’ve been given and the things I’ve accomplished. How do you say “thank you” to someone so young who taught you such things? I think “Adolescenti e cancro” is my answer.


To access this new site (in English or Italian), or share it with someone you know, please visit:  www.adolescentiecancro.weebly.com  

If you are a girl aged 13-24, and you have or have had cancer, you are invited to take part in the first online initiative of Teens and Cancer: a photographic exhibition titled "I'm Beautiful."  You can find more information about it at:
http://adolescentiecancro.weebly.com/im-beautiful.html.

You can also visit the site on Facebook at: https://www.facebook.com/adolescentiecancro




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