I have had so much down time that I truly get to think about my motivations for everything I do. Because of this, I have a really good idea of who I am and what I am all about. This is both a blessing and a curse that comes with dealing with cancer. Most people do not settle into their own skin and know who they are until they are older and have had a lot of time on the earth. With a diagnosis of cancer, no matter what age, we are forced to grow up. Fast. Much faster than many of us want to, but it does come with its benefits. Instead of making stupid teenager mistakes and young adult mistakes, I make my calculated risks and pick and choose my battles. We, the kids of cancer, think about the possible consequences of our actions and decide what is worth our time. I guess a good example of this in my life is drinking. Have I had experiences with alcohol? Of course. But what the difference is that I refuse to willingly get sick anymore. I have had more than my fair share of puking that was not of any fault of my own. I recently decided that alcohol is not worth my time. I guess it does not help that my stomach is really sensitive and I am not willing to risk feeling awful for a day. I found out that I can still have fun and go out without drinking, and no one has a problem with that. I have the right crowd of friends who understand that I don’t really drink- I sip slowly. I guess that is also another part of maturity, having and keeping the friends who are worth the time and effort and feel the same way about me.
Now that I am not in high school, I realize what my dad was saying by “High school does not mean anything,” when it comes to social standings. I do not hang out with many of the people that I did in high school. That does not mean that I hated everyone or that I do not keep contact with any of them, but once you are out of high school you get to explore more and meet more people. Without being trapped in high school with the same people for at most four years, you get to pick and choose who you see on a regular or infrequent basis. Sometimes I wish that I hung out with more of my friends from high school, but with different schedules and likes and dislikes, it can be difficult. I will have to admit that I was excited to graduate to stay away from the social norms and cliques. I feel like college was really the place that I was able to hang out with whomever I wanted to without worrying about who was popular or who was not. I also no longer felt the need to wear a lot of makeup on a daily basis, because I did not care. I still don’t care. I would rather not wear any makeup unless I am going out to something special. This is my favorite part of being 20 (and in about a month 21!).
Okay so now to the real reason why I was compelled to write today. I really wanted to start this last night because my head was flowing with ideas, but I was already in bed and I needed my sleep.
Since my way of coping is to put the bad thoughts and bad news out of my head, sometimes I forget why I do the things that I do. I got to think about why I write in this blog yesterday and really ponder about it. As much as I would love all of the things that come with being “famous” in a way or being well known, which I do think about, I am writing this blog for another selfish reason. Not selfish in the way most people think about the definition of selfish, but it is a very clear message: I want to live. Simple as that. I want the “boring” life that everyone else has, I am tired of having an “interesting” life that is constantly changing as quickly as the wind changes. I would love to have my life to be consistent and to have a regular daily routine. With cancer, nothing is ever concrete. My treatment plans have changed who knows how many times that it is hard for me to even keep track of. It is hard for me to make any plans, especially plans that are months away. My health changes from day to day for the most part. Because of this, I want to raise awareness of childhood cancer because I would like to live. There is not nearly enough research being done for any types of childhood cancer, especially the more obscure forms of it. Ever heard of osteosarcoma, Ewing’s sarcoma (that would me my type of cancer), the numerous types of leukemia, or even brain tumors in children? Unless you have immersed yourself into the world of childhood cancer, any of these are pretty much unheard of. Why is that? As Rebecca Melgoza puts it, everyone says, “Not my child.” No one thinks that cancer could ever attack their children. Unfortunately for all of us, cancer does not discriminate. But no one wants to talk about childhood cancer because it makes people uncomfortable. Well, that’s too bad. Cancer is a REALITY for us. No matter how normal anyone considers themselves, how different, how healthy- cancer can still affect loved ones. It needs to be talked about. As much as I hate bringing up the ugly truth about cancer and how it is a part of my daily life, I still do it. It even makes me uncomfortable. I hate thinking about cancer, but if I won’t then who will?
Kids make up the future of the world. If kids are dying left and right of things that CAN be taken care of, why is there no research being done? Why is there no funding for childhood cancer? Honestly, if all of the funding that went to the wish foundations (I do appreciate them by the way) were put into research, I have a feeling that wish foundations would no longer be needed. I wish that the poor kids affected by cancer would not have to go through the whole process of getting a wish approved, because that means that they have gone through terrible hardships.
My good friend Eden is a great example of research that should be done. She had a type of leukemia (I have no clue though) that was really tough and her body was not responding to the chemo that was protocol for leukemia. The brilliant doctors decided to try something, they gave her ICE chemo (which is for hard tumors, this is the type of chemo that I have gotten and will probably be getting more of) and suddenly, her spleen was getting smaller and the cancer cells were knocked out. So why is there no research going on to try different chemos and to make a different protocol? This is something I will probably never understand, but I will still complain about it.
The youngsters (I will include myself in this group) haven’t had the opportunity to live a full life. There are kids younger than I am dealing with cancer and going through hard treatments but they get no recognition. They have no say in the matter, there is no choice of whether or not to do treatment. They go with the flow and deal with the horrible nausea, body aches, mouth sores, being poked and prodded, and just being in the hospital with grace. These kids do not complain. They may cry, but putting up with everything well warrants this. These kids could care less about getting a Playstation for Christmas, they just want to feel good. Material items are only a comfort, never a necessity. I will be honest though, shopping and getting a new comfy sweater makes me feel good. I guess it makes me feel more normal and gets my mind off of the fact that I may look normal, but on the inside my body has been ravaged by cancer. My car is a comfort and does actually get me out of the house more. Nail polish makes me happy, seeing the cool colors that I can choose from give me some sort of control in my life. What would truly make me happy were to always feel good, feel normal, but these things do help. As awful as that makes me feel saying it, material items are a sort of coping.
The things that truly make me feel fantastic is getting good news. This may not even be good news about me, but good news about a friend, but it makes me feel great on the inside. I would prefer to get good news about my body, but I will totally accept good news about my chemo buddies, or even my other friends. I love hearing about people getting good grades, people feeling good in their own skin, doing well in a meet, or really any achievement. I will be honest, I do get jealous when I hear that people are in remission or hearing about the awesome schools that they have been accepted into. At the same time, when I feel good, I feel bad for those who do not. I guess it is a double-edged sword. However, I do feel like good thoughts do help with getting good news, so I try to stay happy no matter what. I am a little cynical (or a lot) but I really am happy. I am much happier when I feel good, but even little things make me happy. My cat makes me happy. Food makes me happy. Watching a good movie makes me happy. Simple things. I also feel great when I hang out with people who understand how I feel. This mainly does apply to those who have been affected by cancer, but other friends truly do understand how I feel and how I am. I love talking to people who complain about the same things that I do- especially those who want to change the way things are. Hey, a girl can dream right? But I am doing more than just dreaming- I am working to make a difference. I want to get the word out that childhood cancer is something that can be treated, given the research and awareness. I want to make it as big of a name as breast cancer is. I don’t see why this can’t happen.
I loved your article as much as I love you. Love Dad.
Hi Lauren, there are ways to find out what research is being done for Ewings Sarcoma… I googled “drug study ewings sarcoma”. Up came http://clinicaltrials.gov/show/NCT01858168. In your spare time you might want to get in touch with Dr. Edwin Choy of Massachusetts General in Boston. It looks like they have a joint venture with the Dana-Farber Cancer Institute. Let me know if you want any help.
Thank you, I will definitely give them an email and see what is up. I am also going to need to look up the foundations that actually research childhood cancer specifically. And I would also love to find one that does research for ewings sarcoma. Then I would publicize them and get them out there!
http://www.cancer.gov/cancertopics/pdq/treatment/ewings/healthprofessional
National Cancer Institute seems to be doing just that.
http://www.childrenshospital.org/health-topics/conditions/ewing-sarcoma
Also, Dana-Farber in Boston is doing some research.
How the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center approaches Ewing sarcoma – See more at: http://www.childrenshospital.org/health-topics/conditions/ewing-sarcoma#sthash.R3AyhCjI.dpuf
http://www2.mdanderson.org/cancerfrontline/2012/03/teaming-up-two-drugs-helps-some-ewings-sarcoma-patients.html
MD Anderson in Houston has a study
http://sarcomahelp.org/ewings-sarcoma.html
This one seems to be a collective which keeps track of what everyone is doing for Ewings Sarcoma.
Let me know what other info I can help you find.
Janice
Thanks Lauren! Well said and very much appreciated. My daughter Katie is part of the ‘cancer club’ and agree with you 100%. I have seen her grow up much faster than she should have to. We constantly keep you in our thoughts and prayers. Unfortunately, my list continues to grow. Way TOO many kids effected by cancer. Cancer can SUCKIT! Stay strong!
Thank you! And if you ever feel like I need to add something, like a topic to talk about or something that bothers you about the cancer world, please let me know so I can write about it!