5things

Now, I’m not going to profess that I know everything there is to know about cancer, or anywhere close to that, but having been a cancer patient I think I have a pretty good idea of what we, or at least I, think people should know about cancer. Especially since I knew little to nothing about the disease or its fighters before I was slapped in the face with a diagnosis myself. Realizing and admitting that you are ignorant is not easy, it’s sort of like swallowing vinegar or 250 mg of prednisone, but once its done you have the opportunity to open your eyes and your mind to reality. You have the ability to learn, understand and analyze the things that really matter in this life, to see what goes on in the world and play a part in making it a better place. More than that, you can inform and help others in doing the same thing.

Of course, I don’t meant to call anyone ignorant, but I know that I was ignorant to many things when I was diagnosed with Leukemia at age 20 and since that diagnosis I have begun to pay more attention to everything going on in the world, starting with cancer. Everything that I knew about cancer was surface level, and honestly, that might be saying too much. Most of my detailed knowledge was from television, which basically means that I knew nothing besides the generic details that I’m sure everyone knows. Cancer of a particular area, spreads or doesn’t spread, different stages, chemo/radiation, works or doesn’t work. This left me totally unprepared for a cancer diagnosis, which is exactly what I got. I believe that if I knew what I know now then, I would have had a smoother transition than I did. And my hope is that by creating this list of things that I wish I knew, I can help others to cope with their diagnosis.

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The Hollywood version of cancer is often an over-dramatization of what the cancer experience is really like. Sometimes the information and images shown on television and in movies is not accurate or out of date. For example, I was diagnosed with Leukemia, a term I remember hearing for the first time when I caught my Dad (I know, right?) watching A Walk To Remembereveryone’s favorite cancer movie about a teenage girl with Leukemia who falls in love. Well, that movie was made in 2002 and I was diagnosed in 2013, so when my mind immediately jumped to that movie after hearing the words “Leukemia,” I was panicking for nothing. Ten years later, cancer treatment is leaps and bounds from where it was back then. Of course, I didn’t know that then, but you do now, which brings me to my second point.

2thingScientifically, medically, you bet, things are getting good! No, there is not a cure for cancer, not yet anyway, but things are improving and will continue to until there is a cure for everyone. However, treatments are improving, people are surviving, things are getting organized and stuff is getting done. I think a lot of people don’t realize the progress scientists and doctors have been making in the past decade. Sometimes, when a problem isn’t right in our faces we don’t pay attention to it until a breakthrough happens, t least, that’s how I thought about things, “There hasn’t been a newscast for the cure of cancer so things must still be pretty bleak over in cancer-land.” This just isn’t the case. Chemotherapy and radiation are still what is used to treat cancer, but treatments are catered to the individual, to each case, to the specific cancer. We learn more and more about the disease, the drugs, the treatments everyday, whether its broadcasted or not!

3thingSo this is really cool. Sometimes I think maybe I’m the only person who didn’t know about this stuff before I was diagnosed but I figure, if I didn’t know there’s bound to be others! Everyone knows that chemo and radiation make you uncomfortable, they make you nauseous and give you pain, along with a myriad of other symptoms. It is only reasonable to assume that there are resources to counteract these symptoms. And there are! My personal favorite is nausea medicine. I have lived in gripping fear of nausea and vomiting for my entire life so my biggest concern with going through chemo was that I would have to deal with it every day for 8 months. Finding out about Zofran (my personal favorite) and several other nausea treatment options literally saved my life. I am proud to say that in eight months of intense chemotherapy I threw up a total of one time, that’s right one. So don’t be afraid of chemo, like I was, because there are plenty of resources to help you deal with the side effects!

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This is something that I cannot stress the importance of enough. If I have cemented one thing into my mind from going through this whole ordeal it is that everyone is unique in our thoughts, paths, personality, and physicality. How does that relate to cancer? When I was sick I found myself comparing my illness and my experience to others around me. I knew that this was unhealthy and tried to avoid hearing about other cancer patients as much as possible. It is extremely difficult to keep your spirits up when you hear about someone with the same cancer as you dying. In these times, I soothed myself by reminding myself of the facts. We are all different. Everyone in the world, everyone with cancer, everyone with leukemia. All of my experiences are my own, my cancer is unique to me, my treatment roadmap, my doses, my schedule, my body is my own and it unlike anyone else’s. Sure we might overlap in some areas, we might have had the same drugs, but we had different side effects. So take comfort in the fact that you’re different, you’re you, and no matter what anyone else says about their friend who had this or their doctor who said that, your on your own individual journey.

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When I was diagnosed I had a hard time dealing with the fact that I didn’t have a choice. I had to drop everything and become a full time cancer patient. I had to spend a good part of the week at the hospital willingly injecting myself with poison so that I might have a chance at living. It took me a while to be able to focus on the fact that there are some things in this life that we just cannot control. My own personal tsunami. But once I accepted this fact, I was able to move forward. Acceptance is the first step to recovery. The first step towards focusing on what really matters and what you actually are capable of influencing. Like if you want to be treated, where you want to be treated, how you are going to handle this crisis, what you are going to do after its over. When I realized that not being able to make one decision, gave me the opportunity to make so many more, like the decision to write this blog right now, it made everything hurt a little less. It enabled me to take back my power from the universe, to stop being the victim and to start being the fighter.

Knowledge is so powerful, and though knowing these things won’t stop the hurt, the sadness, the anger, the fear, I hope that it will lessen the blow for someone out there.

xoxo Kathy

NPR TFIOS Interview

Hello friends!

If you read my last post, you’d know that I have been taking advantage of some really great opportunities lately! One of which, was participating in an interview with NPR about The Fault In Our Stars (perfect timing since I just finished my review of the book and saw the movie). NPR’s Nancy Shute wanted to write an article comparing the way that YA/teen life with cancer is shown in TFIOS to what it is like in real life, so they contacted my hospital. They gathered a few patients who fit the age group and had read the book in order to get their perception. I was one of those patients, and it just so happened that I only read the book so that I could make those comparisons on my own blog!

Of course, I am very grateful for having had the chance to participate in this interview. It is exciting to me that a larger platform like NPR would do a story like this, drawing attention to the fact that what we see on TV and in movies is not always the truth, especially when it pertains to cancer. You can read the NPR article, written by Nancy Shute, here. If you took a moment to read it, you might notice that I did not have an answer to every question. In fact, I was not asked every question that they included, but that doesn’t mean that I don’t have an answer! So I thought that it would be fun to answer all of the questions here on my own blog.

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So is the movie version of cancer anything like cancer in real life?

I was weary of the movie because blockbuster cancer movies are typically unrealistic and over-dramatic. For example, they hang giant bags of horrible looking red chemo all over, people are constantly vomiting, and that’s just not how it is. I was so relieved and surprised to see that they didn’t do that! I feel strongly about this because I had a hard time convincing myself to sign the papers necessary so that I could begin chemotherapy because the only perceptions of chemo and cancer that I had were from movies and television. My nurses literally had to tell me, ‘If you’re thinking it’s like what you see on TV, it isn’t.’ I had this warped perception of how the chemotherapy would affect me. I don’t want other people to feel that way.

Truthfully, the movie doesn’t show much of what cancer, in terms of chemotherapy, is like. Neither of the two main characters are going through intense chemotherapy for the majority of the movie, this is also why they have full heads of hair. Instead, the movie focuses on life after cancer, or at least, a more stable prognosis. It shows more of the mental and emotional struggles that us cancer patients face, especially at the teen/young adult age. Of course, everyone’s experience with cancer (mentally, emotionally, physically) is different, but I thought that this was a good, realistic representation of what someone could go through.

Hazel and Gus joke about “cancer perks” and the “stereotypical Disney wish.” Did you get those?

Being over the age of eighteen at diagnosis I did not get a Make A Wish, Children’s hospital or no. To be honest I didn’t even know that everyone got a wish. Also, I was in Disneyland the week before I got diagnosed, so I don’t think I would have asked for that even if I did get a wish. I do really relate to “cancer perks,” it is something I say and hashtag on my Instagram posts. I think those kinds of sarcastic, ironic remarks are just part of being a young person with cancer!

Loneliness is a real theme for Hazel, the idea that she’s so isolated from regular teenage life. Did that happen to you?

When I got diagnosed, I was living in a different state than my family. I was just beginning my life and building my own community. Deciding to get treatment back at home with my family meant leaving my best friends and my independent life behind. I was never alone, but I definitely felt and still feel that I don’t have that social aspect in my life here, not with people my age. I don’t even know where to make friends now that I am not in school. I don’t feel like anyone isolated me on purpose, but I do feel isolated sometimes watching my friends go out and have fun without me. I know that they are still my best friends and that I will be able to get back to them soon.

Let’s talk hair. Did it bother you that Hazel made it through the movie with a full head of hair?

This did not bother me. People who go through chemotherapy do not always lost their hair. I wouldn’t have expected Hazel to be bald because she is not going through high dose chemotherapy, she is on a maintenance drug. I have begun growing my hair back since starting maintenance chemotherapy (low dose). It would have been unrealistic, in my opinion, for her to be bald.

Do you think the movie will help teenagers and adults be better prepared for their own health crises?

When I was first diagnosed, I wracked my brain for anything that I knew about cancer, leukemia and chemo. Most prominently I thought of A Walk to Remember, a story about a girl who had leukemia, she dies. Then, My Sister’s Keeper, oh wait, she dies. There were a few TV shows I remembered like Sex and the City, Samantha gets breast cancer and is seen with a giant bag of bright red chemo going in to an IV, yuck. Also Parenthood, Christina gets breast cancer and spends weeks in front of the toilet barfing her guts out. If anything, these things made me more afraid than I already was for this new chapter in my life. I figured I could either die or wish I was dead from overwhelming amounts of nausea. So no, speaking from my own experience, I do not think that The Fault In Our Stars would prepare anyone for a health crisis. It is about a girl who is going to die and a boy who dies. And when you are sitting in your hospital bed thinking, what is going to happen to me? you are not going to think of Hazel or Gus and feel comforted. You are going to push them out of your mind and think about how strong you are, how you are different, how you can do this and that whatever happens you will be okay. I don’t know that anyone will ever be prepared to hear that they have cancer.

**I would like to note that I do not intend for this post to symbolize any kind of negativity towards NPR, Nancy Shute, or her article. I had a lovely conversation with Nancy and am so grateful to her for allowing me to participate as well as for touching on this subject matter at all! I just thought this would be a good follow up post for my blog.**

Thanks for checking this out everyone, would love to know your thoughts/answers to these questions too! Comment below if you’ve got something to add!

xoxo Kathy