Becoming friends with other cancer patients helped me to combat the feeling of isolation the most.  Sharing my experiences, however bad they may have been, with someone who was and still is going through similar challenges made and continues to make me feel so much less alone.  I first met two survivors through the website Carepages.  My mom kept our family and friends updated on my progress by posting regular updates on the Carepages website (http://www.carepages.com/search?search%5Bterms%5D=clarissaschilstra).  She found several leukemia survivors through Carepages by searching for ‘leukemia’ and ‘ALL’.  She contacted them through email and two of the girls responded.  I became pen-pal friends with both of them as I went through the last year of my treatment. They both helped my immensely.

Being friends with teen cancer survivors had a unique advantage in that they were and still are able to give me advice and support, having finished their treatment and survived.  Sites like Carepages and Caringbridge are great places to find other people going through the same challenges as you.  Camps like Camp Sunrise are also great places to find people going through the same challenges as you, so I encourage you to find one in your area.  Ally and Kyra have become two of my best friends since camp and we continue to have fun together and support each other.

 While having friends who are survivors is important, being friends with people who are still on treatment is also crucial.  Finding other teen patients at your hospital is a great way to build friendships because you are being treated at the same place by the same caregivers.  Many hospitals have support groups especially for teens, but if your hospital doesn’t, then I definitely encourage you to start one yourself, especially if you have not met or become friends with many other teen cancer patients.   When I was in treatment, there was not really a designated support group for teenagers, and I wish there had been.  Discussions and activities in the only available support group were often targeted at the younger age groups. 

Only now, with some of the teens I met at Camp Sunrise (the camp for kids/teens who have or have had cancer), am I helping to start a support group for teens.  I am so excited about it because I know it will not only help me, but it will help others as well.  These support groups are not necessarily group therapy, they are just a place where teens can get together and talk about anything from hospital food to school.  I know, with the support group I am helping to start, my goal is to let everyone share their stories.  There is something incredibly therapeutic about spending time complaining, laughing, joking, and crying, about stories of chemo, ports, spinal taps, radiation, doctors, allergic reactions, nurses, operations, challenges, school, friends, and the crazy life of a teen with cancer.  Making new friends with other teens with cancer is just as important for you as keeping your other friends, in fact, it may be more important for the therapeutic benefits it provides as you endure cancer’s harsh treatment.

The other day one of my good friends, who I met at a summer camp for children and teens with cancer that is sponsored by Johns Hopkins (http://www.campsunrisemd.com/aboutcamp.htm), posted on her Facebook that she needs friends.  She is still on treatment and her post made me remember how I felt that same way when I was in treatment.  I felt isolated, like I was in this little boat all alone in the middle of this vast ocean.  I was in this little row boat, doing everything I could to survive, while everyone else my age was on this giant cruise ship right next to me, having fun and enjoying life.  It was all right there around me so I could see it, hear about it, but I could never reach it.  My treatment prevented me from being part of it.  Many times, I wanted nothing else but to go and join that social event that I knew all my friends and classmates would be attending.  Many times I just wanted friends again.  Yet, I was stuck in the hospital or at home completely isolated from all my friends and their fun activities.

Hospital rooms get very lonely, with only a parent beside you and a nurse who wanders in and out.  No one else is there.  You may spend weeks or months in that room, rarely leaving.  Those long days cooped up in a small room can take their toll emotionally.  When you finally get to go home, it is not always much better.  There may be the comforts of everything you know and your family who loves you, but being stuck at home in bed or on the couch can sometimes feel like a jail cell, like a prison, from which you cannot escape.  Sometimes you may feel hopeless and alone, knowing you still have a long road ahead of you.  This feeling of isolation is often increased the closer you get to finishing your treatment.  You start feeling a little better, yet your immune system is still not strong enough to return to school, and you still don’t have that much energy.  I felt like I was stuck in time, waiting for what seemed like forever to finish my treatment, while everyone else around me was moving on, growing up and enjoying life.  I almost felt more isolated toward the end of my treatment because I was not seriously sick and tired all the time, yet I still couldn’t get involved due to my immunosuppressed condition.  It was my choice to accept this isolation so I could maximize the success of my treatment.  I believed that giving my body the chance to get through the chemo without introducing infections from outside sources would improve my chances of beating the cancer.  In my next post, I will discuss some of the ways I coped with this isolation, both in the middle and towards the end of my treatment…

We are all familiar with the long days we spend sitting in clinic getting chemo or sleeping through chemo on the inpatient floor. How can we be happy when we have so much depressing stuff going on? It can be simple really, all you have to is find your happy place.  

A hospital room gets pretty lonely, and there is usually only one parent or family member staying with you.  The nurses come in once in a while, but there is no one else there.  You may spend weeks, sometimes even months, in the hospital.  The long days of being cooped up in a small room can take their toll.  Many times you may be too sick and can’t stay awake, so you spend your time sleeping.  

When you do feel well enough to stay awake and do something, whether it be at home or in the hospital you should try doing activities that you think are fun, activities that take your mind off everything going on, activities that make you happy.  Whether it is visiting the playroom, facebooking with your friends, or watching your favorite TV show, there are plenty of ways to keep your mind going so you don’t focus on all the “yucky” stuff going on. 

 Visiting the playroom or the teen room is great because you can always find something there to do.  If you are inpatient or outpatient, the Child Life specialists can actually bring the crafts or games to your room, like room service only with games, movies, and crafts instead of food!  

During cancer treatment, it’s really hard to stay in touch with your friends because either your counts are too low or you just don’t have the energy.  That’s where technology comes in handy.   Connecting with friends via Facebook, Myspace, email, texts, phone calls, or video chats are great ways to keep in touch with them.  Keeping in touch with your friends will help you feel less alone and you can find out from them what’s going on at your school or on your sports team, which will help you feel more connected to the “normal” life you used to live.  Staying connected with your friends is really important for when you go back to school too because they are the ones who can help you get from class to class and get used to being in school again.

Being stuck in the hospital is rough and sometimes being stuck at home is not that much better.  Sure, there are the comforts of everything you know, but being stuck in bed or stuck at home in general can sometimes feel like a prison.  Finding something that you can put your entire mind into, like arts and crafts is a really good strategy.    Finding a funny movie or TV show can help too.  My personal happy place was whenever I would watch my favorite TV show, “Friends.”  For all you teenagers, I highly recommend that show because it makes you laugh sooooooooo hard and laughter really is the best medicine!  “Friends” has 10 seasons, so I could watch the episodes over and over again and really become friends with the characters.  For me, it pulled me out of my discomfort and into this other funny, happy world.

To me, finding your happy place means just doing things that help to feel less alone and much happier. Try to find you happy place because it will help you beat your cancer.

     As my first post, I thought it would be a good idea to start at the beginning of my journey: my diagnosis.  I am a two-time Acute Lymphoblastic Leukemia survivor.  I was diagnosed the first time at 2 1/2, went through treatment, and survived.  My cancer relapsed 10 years later when I was 13.  It was the summer before 8th grade.  Luckily I do not remember much of my first diagnosis, but I do, unfortunately, remember almost everything about my diagnosis at 13.  Being diagnosed with cancer as a teenager affected me in many ways.  You can read more about me and my life now on my “About Me” page, but here I want to start talking about the journey.  It is my hope that, with this blog, I can provide as much support and guidance to other teens with cancer as I can, so here I am.  But, like I said, let’s start at the beginning: the diagnosis.  

     In my opinion, a diagnosis of cancer is like an earthquake that leaves its victims in complete shock and it devastates the lives of everyone it touches.  One of the hardest parts of hearing the news was not the news itself, but the feeling of being powerless.  When I was diagnosed, I was laying on an operating room table about to be put under to have a diagnostic spinal tap and bone marrow aspiration done to find out what was wrong with me. My parents were standing across from the stretcher I was on, since they had been waiting for me to go under.  The anesthesiologist had his finger on the syringe and was just about to push when the pediatric oncologist came running in.  Then he said the words that blew my world apart: “It’s leukemia.” Considering my previous history, my parents and I knew what that meant.  That moment is crystal clear in my memory, as it will be, no doubt, for a long time.  However, I cannot remember much about how I felt, nothing except for the feeling of complete and total shock.  Most of what I can remember was that my parents were sad and crying, which worried me.  It made me feel like doing something that could help them instead of just sitting there and feeling bad about it.  In some way, I think it is important that others remember that, at that moment, you are not only thinking of your own world, you are thinking of how this will affect your friends and family.  I was ready for fixing the problem and moving forward, yet I was stuck, helpless, with no idea what would happen next.  Within seconds, my life had changed.  It’s like a light switch turning a light off.  Life, as you know it, suddenly stops, leaving you questioning the reality of the situation. 

     The shock that I felt from the diagnosis and its life changing impact came along with a deep sense of fear, anger, and loss. After the initial shock of the earthquake, it creates a tsunami that leaves a path of destruction in its wake. The best way I can put it is that it shakes your inner core and leaves you dazed and confused.  You feel as if your world has just come crashing down on you.  I know when I heard the news, I tried not to cry, even though I did.  I tried to stay strong and just move forward.  Now I realize, it is more important that you allow yourself time to experience your emotions, you should take it slow.  Talking about those feelings is a great release.  Doctors, nurses, and other members of the healthcare team are there for you, physically and emotionally.  If possible, turn to your friends and family for support.  You should definitely try talking about what you are going through, and your parents should make sure that you are talking and not keeping your emotions quietly tucked away. Believe me, you have to let your emotions out if you are going to stay sane and not get depressed.  Being diagnosed with cancer is one of the most surreal experiences a person can go through.  For me, it felt like I was in a dream and I could not wake up.  Other teens I have talked to have said that it felt as if a truck ran them over, backed up, and ran them over again.  No matter which way you put it, a diagnosis of cancer is unreal.  Questioning the reality of the situation is normal, wondering if you are dreaming.  Feeling pain and anguish is normal.  It takes time before you “wake up” and realize this is the new reality.  I know, for me, I went for months feeling as if I were in some kind of dream, as if it wasn’t real.  It took me months to accept it as the new reality of my life and to move forward.  I mean, let’s face it, when you are thrown into a hospital and given all kinds of medications the day after you were diagnosed, it’s difficult to process everything that has happened.  You are thrown into this foreign world, this painful life, within hours.  Try to give yourself time to accept this new reality.  


     In my next couple of posts I will provide more ideas and suggestions for coping techniques, many of which helped me to stay positive through such a difficult time...