When I got sick, I noticed a really peculiar phenomenon.  As of now, I don’t think there is a name for it, but I have to believe that I am not the first person to experience this!  The phenomenon I’m talking about is the flood of cards and gifts, filled with messages of friendship, from those people who refused to be your friend before.  The phenomenon I’m talking about is the almost magical disappearance of that friendship as soon as treatment ends, or when treatment seems to just keep dragging on during the second year. 

     I came to a better understanding of this phenomenon when listening to the song by The Band Perry called “If I Die Young.”   I don’t like the song for its words, which are rather depressing, but for the way its peaceful rhythm sounds.  However, I listened to it several times over the last few weeks and one phrase did stand out to me: “It’s funny when you’re dead how people start listening.”  I think this gives a name to the phenomenon I described.  

     It is definitely funny how people start paying attention to you as soon as something tragic happens.  I was very bothered by that when I began my treatment.  People who had previously never wanted to be my friend, people who had actually been mean to me before, were writing me letters telling me to “call anytime if you want to talk!”  I was even more angered when I finished my treatment and saw how many of these people quickly forgot about me.  

     I recognized recently that I’ve been holding a grudge, a grudge against certain people who were never there for me when I wanted to be their friend, who were suddenly surrounding me as soon as I was at death’s door, and then disappeared when my treatment ended.  In fact, I felt like I really hated these people because of their sudden interest in my life and the following disappearance of that interest.  This put me in a bad position because it just led me to thinking mean thoughts.  Ironically, I found myself wanting to ignore them as much as they had ignored me before.  Yet, I have come to understand that such a train of thought is not worth it.  The frustration and anger that developed from thinking about those people only led me to feel depressed, depressed because I found myself in a vicious cycle of asking why now and why not before.  

     My purpose in writing this post is to advise you against holding anger and frustration towards people who came to support you when you were diagnosed and then disappeared when you were better.  Rather, as I have recently discovered, be grateful for the fact they were there when you were so sick.  Be grateful for the cards and gifts that gave you something to open, something with which to divert your focus from the difficult reality you faced.  Be grateful and forgive, then focus on those who were, and always will be, there for you.

I know I wrote last time about something I learned in my AP Psychology class, but I had another lightbulb go off when I learned something else the other day!!  I learned about Post-Traumatic       Stress Disorder (PTSD) and anxiety, both of which are important for you to know about.

     My teacher told us how soldiers are often diagnosed with PTSD or anxiety because they go through traumatic experiences in battle, fighting for their lives and the lives of others.  The soldiers are then done their tour of duty one day, and are supposed to just return home and resume normal lives.  There is no time for them to process their traumas, no more time to spend with the other soldiers with whom they lived and fought.

     Cancer patients are almost exactly like soldiers.  In fact, they are soldiers, just on a different battlefield.  Cancer patients fight for their life, against their own bodies, and experience life-changing traumas.  The battle can rage on for months and years.  Then, one day, your treatment is just done.  You are supposed to go home and start a normal life again.  You have no designated time to process your traumas and you have less and less time to spend with the staff that became your second family during those months and years of treatment.  Crazy, right?!

     If you are in the thick of treatment or towards the end, you have probably thought about the impending transition you will face when your treatment is over.

     In the case of soldiers and cancer patients, I think a key step in the transition is missing.  It is something called emotional debriefing or decompression.  Emotional debriefing (such a fancy word!) means taking time to process the experiences and develop normal psychological reactions to them.  Psychologists can provide this process, but I think for teen cancer survivors, it’s as simple as spending time with others who are also coming out of treatment.  Sharing your experiences and talking about them can really help you become more comfortable with what you’ve been through and not develop PTSD or depression.

     It is crucial that you understand PTSD and anxiety so that you do not have to live with the impact of those disorders, and get help if you know your symptoms are real.  According to Google Health, PTSD is an anxiety disorder that can cause difficulty sleeping, difficulty concentrating, repeated flashbacks of the traumatic event, and feelings of detachment.  Symptoms of anxiety include excessive worry, irritability, trouble concentrating, and even nausea.  Both of these disorders can be treated and it’s important that, if you feel you are experiencing these symptoms, you talk with your doctor so a diagnosis can be made and a treatment plan can be set up. 

     As teen cancer patients and survivors, you have not reached the end of your challenges, but there is a hopeful future.  With proper follow-up care and a slow, steady return to normal, the relationships with people in your normal life will take over and your memories of hospital days will soon be surpassed by memories of happier times with new friends :)

             












     

     
     
     Rumination….. It’s a word I had never heard before in my life, have you?  It sounds so silly!   Surprisingly, it’s actually a word, and an important one too!  After reading an article for my AP Psychology class (Lost in Thought: The Perils of Rumination by Susan Nolen-Hoeksema), I learned about rumination.  I knew, right away, I had to write a blog about it!

    Rumination is repetitively thinking about difficult situations and all their possible causes, consequences, and meanings without moving into problem solving.  If you are wondering whether you are a ruminator, these are some questions ruminators usually think about: 

    “What did I do to deserve this?”    

    “Why do I have problems other people don’t have?”

    “Why can’t I handle things better?”

I know I definitely did plenty of ruminating after I relapsed.  You hit this phase in which you get stuck wondering about all of those same questions, which is fairly normal after a traumatic experience, such as the cancer diagnosis that rips your world apart.  

    Here’s the problem….  Ruminators are at a much higher risk of mental health problems, e.g., depression, and they are not able to move past the challenges they face.  Rather, they get stuck in a rut and can’t seem to move on and figure out a way to get through the challenge. 

    Whether you were just diagnosed, or have been going through treatment for months already, you have probably found yourself feeling like life is unfair and asking, “Why me?”  You have probably found yourself ruminating.  However, I want to emphasize the importance of catching yourself when you do that.  As I said above, dwelling on those thoughts and that kind of attitude can be dangerous.  You have to pull yourself out of it while you can, so that you can face the challenges and move past them.

    Here’s an easier way to look at it… I was at a fundraiser for Johns Hopkins Pediatric Oncology the other day, and a wonderful 15-year-old cancer patient gave a speech.  She ended with the quote “You can’t change the cards life dealt you, but you can change how you play the game.”  That’s exactly how you should try to think.  Take time to accept the challenges you are facing, those terrible cards life dealt you.  Then, stop worrying about them and think about how you can adjust your life accordingly.  In a card game, terrible cards may give you a lower chance of winning, but the chance is still there.  If you spend all your time moping around about how terrible your cards are, you definitely won’t win the game. 

    So, stop ruminating and start focusing on what you CAN do to work through your challenges.  You will find this approach to be much more productive and it may lead you to a more positive outlook. 

I’m not really an astronomy person, but sometimes cancer treatment seems like a black hole.  When you head into it, you have no idea what will happen.  During it, you never know if you will ever be able to live normally, all you are able to do is just try to survive.  When you come out of it, you wonder what happened to those two and a half years of your life.  It blurs the years together in this clump, as if those years didn’t exist.  

            According to US News and World Report, “gravitational pull of the largest black holes is equal to that of more than 3 million of our Suns—not even nearly mass-less light can escape it. According to Einstein's theory of general relativity, the force is so great, that whatever falls into a black hole is crushed beyond its very essence into a state that "crosses over" the boundary between something and nothing, never to be seen again.”  Cancer treatment definitely seems to do just that, crushing a person beyond his or her very essence and pulling into it months or years of that person’s life.

Lots of scientists say that there is no way to escape a black hole. It has too much force they say.  Sometimes I wonder if cancer treatment is escapable because  its physical and psychological effects seem to stick around long after it has finished.  Even though I am done my treatment and am half way through my twelfth grade year, I find myself struggling with several different things.  I feel like I should be half way through college already, making an independent life for myself, at a maturity level far beyond that of my friends.  At the same time, I feel like I’m only in tenth grade, still struggling to fit in with friends,and having a hard time knowing how to act around guys.  I feel like I know so much more about life than my friends, yet they know so much more about the life of a high school student than me. I feel like I’m more than ten years older than my friends sometimes, yet I just recently got my license and I haven’t had boyfriends or gone to parties like they have.  It’s a strange combination and I don’t exactly know what to do about it.

There is one researcher at the University of Pennsylvania who has figured out a way that information can survive a black hole and it involves a whole lot of complicated stuff.  I don’t know those details, but I think the idea is same with cancer treatment.  Some people think you can’t survive it, but really you can.  You just have to think about how to go about it.  Luckily,surviving cancer doesn’t involve the crazy rocket science that real black holes require.  Surviving cancer treatment simply involves sticking to the mentality of the scientist who found a way for information to survive a black hole: find a way to survive. 

I am still climbing out of the black hole it seems, but what pushes me further and further out is all of the work I have done to help other children and teens with cancer.  Speaking about my story as a Johns Hopkins Patient Ambassador gave me confidence, writing this blog gives me purpose, helping to run a teen cancer support group makes me happy, and becoming a counselor in training at Camp Sunrise (Johns Hopkins cancer camp) allows me to lose all of my inhibitions for one week every year. Whether you feel you need to get closer to cancer or farther away from it is your choice, but you may find that something to help others, and not necessarily others with cancer, makes you feel better about yourself and your life.    

            Don’t let the gravitational pull from the black hole of cancer treatment crush your very essence :)

     Are you a Tigger or an Eeyore?  As I watched a video in my computer science class, about Carnegie Melon professor Randy Pausch, these words really stuck with me.  Randy Pausch is famous in the world of Computer Science, a world I would not be in if I wasn’t required to take a technology class to graduate.  Yet, the video was incredibly inspiring.  Randy Pausch passed away in 2008, after battling pancreatic cancer.  The video showed his last lecture.  He spoke about many things, but the difference between being a Tigger and an Eeyore was an interesting contrast I had never thought of before.

    Thinking about those words, a light bulb went on in my head.  Going through cancer treatment at any age, or simply going through life, you have to choose between being a positive, optimistic person or being a negative, pessimistic person.  My oncologist, a very awesome doctor at Johns Hopkins, once told me, “I believe very, very strongly that the degree to which a patient maintains a positive mental attitude is one of the most important factors in determining the success of the treatment.”  

    Choosing to be an Eeyore means choosing to be pessimistic, choosing to be sad, choosing to be sorry for yourself, and choosing to bring down everyone around you.  Choosing to be a Tigger means choosing to be optimistic, choosing to be happy, choosing to turn this negative experience into something positive, and choosing to brighten the lives of those around you.  The choice is yours, but I highly recommend being a Tigger.  I almost died multiple times during my treatment and most of those times were because allergic reactions caused me to stop breathing, break out in hives, get a 104+ fever that wouldn’t go away, or all of the above.  Other times I just had horribly painful experiences, like a 28-day long spinal headache caused by a bad spinal tap, or a painful reaction to one of my chemo shots that became a large, painful welt on the side of my leg.   I am sure these experiences are not nearly as difficult as the pain and discomfort that other children and teens with cancer have experienced, yet they were challenges all the same.  I made a conscious decision at the beginning of my treatment that I would smile and laugh as often as possible, think positive about my future, and never feel sorry for myself.  I truly believe that trying to be a Tigger, trying to be as positive and happy as possible, helped save my life.

    Do not let the fear and pain of cancer treatment turn you into an Eeyore.  Bounce above it, like Tigger, by trying to maintain a positive attitude.  

When going through cancer treatment, you face an insane number of challenges.  For each person, some are worse than others.  For me, body image, specifically weight, was one of the biggest challenges.  Before I was diagnosed, I weighed about 150 pounds and I was 5’8 ½” tall.  My weight was perfectly normal for my height and I finally looked great in a bathing suit, which was awesome for me because I spent my entire childhood battling my weight, after recovering from my first leukemia treatment.  Then, I relapsed and everything changed.  At first, I lost 30 pounds because I barely ate anything during the first four months of my treatment.  Losing weight was not a big deal for me, I didn’t mind it because I thought I would get back to a healthy weight as soon as my treatment ended. When I started the prednisone and dexamethasone steroids, I ballooned and went right back up to 150 pounds, which was not really a problem either.  Then, I would lose a little more weight and gain a little more weight as I went from steroids, to chemo, and back to steroids.  The problem arose during the end of the second year of my treatment, when I was still getting lots of steroids but my chemo doses, and the frequency of my chemo treatments, decreased.  This was when I gained another 30 pounds, landing me at 180 pounds.  By the end of my treatment, I had stretch marks all over the place because I had gained so much weight so quickly.  When I finished my treatment, I thought the weight would start to go away once my body began to detoxify and regain strength.  Yet, I proceeded to gain another 15 pounds in the 6 months following my treatment because I was eating more but still not exercising, landing me at my highest weight of more than 195 pounds.  

        I was okay when I had no hair anywhere on my body, I was okay when I looked as pale as a cotton sheet, and I was okay with the scars I had from my two ports, spinal taps, and various other procedures.  Yet, my weight and stretch marks really bothered me.  I just felt disgusting because I felt so different from my friends and the other girls my age.   They could all wear these gorgeous bikinis to the pool and flaunt their perfect teenager bodies that were toned and tanned from the sports they played or the activities they were in.  I felt like a 40-year-old compared to them, and it really started to depress me. 

        However, at one point, my parents helped me come to the realization that it didn’t matter if I looked different than them.  My body had gotten me through hell and back.  I was still alive, wasn’t I?  I should regard my weight, my short hair, my scars, my stretch marks, and my pale skin as symbols of what I have overcome.  Every time I look in the mirror and don’t like how I look, I remind myself what I have been through, what my body has been through.  I have survived something that other girls my age could not even imagine.  

        The most important thing I needed to do was not to worry about how I looked, but to worry about being healthy.  So, I started to exercise and eat healthier.  That alone made me feel so good about myself because I got my body really moving again, something it hadn’t done in almost 3 years.  It felt even better because I was doing it for me, for the sake of being healthy, and not for the sake of looking like my friends.

        Whether you struggle with your weight, your scars, losing your hair, or something else, remember what you are going through or what you have been through.  As cancer patients and survivors, we will always be slightly different than other people our age.  Don’t worry about how you look, just worry about being as healthy as possible.  Accepting yourself as you are and just focusing on taking good care of your body is all that matters.  In doing so, you will be able to stay positive and be proud of what you have survived.

Learning that another teen you know has lost his battle with cancer, after fighting so hard for so long, can be incredibly difficult to deal with, whether on treatment or off.  Recently, a 15-year-old boy I know from the hospital and the summer camp I go to for kids and teens with cancer lost his long and difficult battle with cancer.  It was heartbreaking and made me cry, it was terrifying and made me tremble with fear, and, at the same time, it was also incredibly inspiring and made me want to reach my goals and make something of myself in the future.  

The news was heartbreaking because yet another life was lost, a young life that was filled with so many hopes and dreams.  He did not ask for this to happen to him and it just seems so unfair.  It makes me cry thinking of how he will never get to live out his life and reach all of his dreams.  

The news was terrifying because it reminded me of how easily it seems cancer can come back and get me. I have fought cancer twice, and my battle has been won for now.  Yet, I still fight every single day against the fear of it coming back again.  All it takes to scare me is a fever, a bruise, or feeling tired. 

However heartbreaking and terrifying this loss may be, it is inspirational above all else, and that is the most important thing to remember!  He had two wishes to fulfill before he died: to complete 9th grade and to go to one more week of Camp Sunrise.  He fought hard so he could make it out of the hospital so that he was able to finish 9th grade.  Then, he fought harder to make it to camp for the whole week, even if it meant going home each night and coming back each morning or afternoon.  He finished the week at camp with everyone else on August 6th.  Just barely 2 weeks later, he died.  He completed both his goals.  To me, and I believe to everyone that knows him, he will always be a symbol of strength, perseverance, and motivation.  As cancer patients and survivors, we all need to be positive when life seems to be against us and set goals for the future, as this boy did.  Thanks to this boy, I am now even more determined to set and achieve my own goals.

Having cancer as a teenager means that you have to miss school during some of the most formative and exciting years of your life, whether that be middle school, high school, the transition between middle school and high school, or the transition between high school and college.  While your friends have been busy socializing and starting new stages in their lives, you have been thrown into this world of hospitalization and adults.  While your friends spend the year having fun with people their age, you spend your year in and out of the hospital, surrounded by adults, and then with your parents at home.  When it is time for your return to school and to hang out with your friends, it can be incredibly difficult to get along with other teenagers again.

When you spend so much time with adults and go through hardships that your friends and classmates can't imagine, you become more mature than your peers.  You can no longer relate to the drama, silliness, and immaturity of some middle school and/or high school students.  It's like the movie “17 Again”, with Matthew Perry and Zac Efron.  You feel like (and really are) an adult stuck in a teenager's body. It can be really challenging trying to figure out how to get along with other teenagers (even though they are your age) after spending so much time around adults and going through something that makes you grow up so quickly.

You may feel, many times, like you hate high school and are just waiting to move on to college, or even beyond that, to start fresh with people who are so much less mature than you have become.  As frustrated as you may be, it is so important to find a way to somewhat enjoy the years of school you have left, especially after missing so much.  Try to accept the fact that you are going to be far more mature than most of your peers and that feelings of frustration and annoyance are completely normal.  

The thing that helped me the most was finding other teens that had survived cancer, or another serious illness. Through similar hardships, they had become equally mature, and were dealing with issues with friends and people their age as well.  Try to find a support group or somewhere that teens who have or have had cancer or other serious illnesses can get together.  There was no support group just for teens that have or have had cancer in my area, so I started one with 3 of my friends from Camp Sunrise (the camp I go to for children and teens who have or have had cancer).  I was pleasantly surprised to find out that some of those girls were also struggling with people at their high schools, and that I was not the only one.  When we have issues with people and friends from our schools, we always have each other to turn to as friends, which is very comforting.

If you are going back to school after being in treatment for a while, try treating your return to school as if you are going to another country and learning a new language.  This can be helpful because none of your friends and classmates in school will be able to speak your language – trauma, pain, isolation, nausea, hair loss, etc. Don’t expect them to understand, they can’t!!  Take it slow.  Don’t expect that you will get along with your old friends or that they will understand what you went through.  Try to meet new people and make new friends, even if it means finding people in grades above yours or people who don't go to your school.

Being so mature, and sometimes more comfortable around adults than most people your own age, is definitely an inconvenience now.  In the future, when it comes to applying to colleges and jobs, however, it will help you get ahead and create a positive future for yourself.  In the mean time, create as much of a positive present for yourself as possible and try to enjoy the few teenage years you have left before really becoming an adult.

It has been a while since my last post, it is amazing to me how quickly “normal” life seems to take over once again.  As I continue to enjoy my new independence and “normalness,” I often think back to the times when things were not so normal and I had absolutely no independence at all.  As I finish my junior year of high school and am preparing to get my driver’s license, it feels like just yesterday when I was completely dependent on everyone around me.  

When you have cancer as a teenager and lose your independence, it is incredibly difficult.  During a time in your life when you are supposed to be gaining independence, it can be devastating to lose it all at once.  I remember the countless nights I spent in the hospital and at home, not even able to go the bathroom without help.  There were days I was so sick that my mom, dad, or nurse would have to help me walk in to the bathroom, sit me down, and help me up.  There were many days when I couldn’t shower without my mom’s help, or even dress without her help at one point.  I was self-conscious plenty of times and there were plenty of times when I just wanted to escape from it all.  It felt like I was trapped inside of my own body and couldn’t seem to get out.  Inside of you, that teenage mentality is gearing up and ready to break free and experience life, independently, as a young adult.  Yet during treatment, your body can’t keep up and you find yourself completely dependent on those around you.  That feeling can be incredibly frustrating and hard to deal with.  Believe me, I struggled a lot with it during my treatment.  

However, the best way to beat cancer is to accept that you can NOT get through cancer treatment without help.  Don’t be afraid to turn to others for help while you are undergoing treatment.  The great thing is that, as soon as your treatment is finished, the world will be there, waiting for you to experience it.  You will be even more independent and self-sufficient than anyone else your age because you will truly appreciate the amazing feeling of being able to do things yourself.  Consider taking a picture of your parent or caregiver helping you, so when you are done, you can always look back and remember how far you have come and what you have accomplished.