HOPEBOOK the interactive diary
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This is HopeBook
. Scribble, write, draw, and sketch your way through its questions to reveal answers you may have known all along. This is your interactive diary. There are no rules and there is no order to follow. Flip through the pages and see what others who went through the same experience have to say. When you’re stuck you can lose hope and we want to help you grow. Heal by working through some of your doubts and even inspire others by sharing your story.
MY REACTION WHEN THEY FIRST TOLD ME I HAD CANCER: Mary Longhin, Hodgkin Lymphoma. Diagnosed at 54.
I never once asked myself "why me?". My view is that life is a journey. Not necessarily a long and healthy, happy journey, but one of navigation through all of the side roads that get us lost and hopeless. This is where SUPPORT, TRUST, FAITH and BELIEF became my constant companions. I knew innately that cancer was a big bully that needed to be managed by my entire care team. The first thing I did was to thank everyone that had a role in my diagnosis. Without their effort to become educated, dedicated caregivers I might not have started on my path to beat my "bully" with all of the ammunition we could muster. I'm so grateful and appreciative of all the displays of LOVE, ACCEPTANCE, COMPASSION and PRAYERS shown towards me. I will never be the same person I was per-cancer. I've navigated myself down a road to new beginnings and belief systems with a new community of compassionate caregivers and I learned I was not as alone as I thought I would be throughout my battle to slay my bully.
YOUR ANSWER
WILL I EVEN HAVE A FUTURE? GOING THROUGH SO MUCH TREATMENT MAKES MANY WONDER... Leidy Rossmery Salmeron Salcedo, Dysgerminoma III. Now 22 years old.
One should not doubt the prospect of the future. It’s very important for us to think about the FUTURE because, just like a tree needs to be watered in order to grow, so too we must think of the future in order for it to come to fruition. The obstacles one must OVERCOME are not important. Your future should be thought as just one of the many things that we need to get to in order to achieve our GOALS. Stay positive and stay motivated. Keep your eye on the goal. Keep pushing.
YOUR ANSWER
I WORRY THAT EVEN AFTER I GET BETTER, I WILL NOT FEEL LIKE MYSELF. WHAT CAN I DO TO KEEP MY IDENTITY THROUGH THE CANCER?
Omar Ernesto Arevalo Carmona.
Non-Hodgkin lymphoma. Now 21 years old.
The first step is accepting our condition and facing it with our head held high. I was diagnosed when I was 5 years old, and at that age, many children do not understand their condition. But with time, we understand how special we are and in turn, our lives become that much more valuable. Because as we get older, we learn to take care of ourselves and we notice that we do not do what other children are doing. But when I was diagnosed with cancer, I remember trying to play baseball so that other kids would think I am just as good as they were. Many times my parents were overprotective, but now, at age 21, I can tell you I am still that competitive kid; my personality did not change because of cancer. I am proud in the personality I developed. I always tell people that we need to believe that we are always healthy and that way we will stay healthy. Even though we go through the cancer process, we should not change the way we are. We should love ourselves just the way we were made. We should always be the way we are and never change. That way, other will value you; smile that lives goes on.
YOUR ANSWER
Liat Brecher,
Hodgkin's Lymphoma. Now 19 years old.
THESE ARE DREAMS THAT I WILL NOT LET CANCER KEEP ME FROM DOING:
You just have to realize that yes, while at the precise moment of your treatment you may have to put your dreams on hold, realize that they are only on holdnot completely gone and that you will overcome this and then you will start on your path to fulfilling your dreams with renewed strength, because you know how close your dreams were to being taking away from you. Never give up on your dreams; they are what will get you through this. Keep dreaming and soon you will be able to act on them and start trying to turn them into reality.
YOUR ANSWER
NOW THAT I STARTED CANCER TREATMENT I DON’T LOOK THE SAME, BUT I AM STILL THE SAME PERSON. THESE ARE THE THINGS THAT MAKE ME, MYSELF:
Maryedy Arreaza,
Wilms' tumor. Now 19 years old.
Especially at the beginning, when my mother shaved my head and I saw my bald head for the first time, I was surprised and embarrassed. I immediately decided to start wearing hats and cover my bald head everywhere I went. But after some time, I started embracing my new look and started caring less about what others might think. I hope that this little story makes you realize that we are all the same. No one is better or worse than anybody because of their looks. You are special because you are fighter; you are special because you are you. No matter what your outer appearance is, it’s what is inside that counts. Feel comfortable with the situation that you are put in and be confident to the max. Don’t pay attention to unnecessary and unwanted comments- remember, for nasty comments, you have deaf ears. People will see you in relation to yourself esteem in this situation. So smile, because smiles are free.
YOUR ANSWER
THIS IS HOW I IMAGINE EACH OF MY FAMILY MEMBERS AND EACH OF MY FRIENDS REACTING WHEN I TELL THEM I HAVE CANCER Brayan Duran,
Ewing's sarcoma. Now 18 years old.
It’s hard to be told you have cancer. But sometimes it’s even harder to have to tell your friends. I came up with a solution and that was to be very clear to my bros. If they are ignorant about the disease, I took it upon myself to educate them about it. This way we could talk about it and clear the air. I would answer their questions and explain to them what was going on. Some people felt uncomfortable talking about it but my real friends stuck with me through it all; I knew those were my real friends. My real friends were supporting me and took the time to learn what was going on with me. What is true is that you must tell them and be up front with the people that love you. While you are telling your friends you have cancer, you must hold your head high and stay positive. This attitude will transmit to them. Cancer is tough to deal with but when your friends stick with you, then you know they are your brothers.
YOUR ANSWER
Miguel Jacobo,
HAcute Lymphocytic Leukemia (ALL). Now 22 years old.
THESE ARE THE REASONS I AM AFRAID TO TELL THEM: I sort of see all this as my Cancer Experience. It’s something that happened to me, it sucked ass as I was going through it and I don't wish it upon anybody but I tend to look at it as just something that happened in my life. Everyone has their stories of their life and what they have gone through. I know people who I think have had it harder than me and I also know people that think they have had it harder than me. Again, just an experience in my life. Thinking of it in that light helps me not to stress over telling people about it. Sometimes the conversation calls for some First Hand experience talk and sometimes it doesn't. I've also notice that not everyone thinks it’s as a big deal as I do. I tell some people thinking I won’t get much of a reaction and they are in tears and then there are times when I am expecting 101 questions and request for horror stories and I barely get a raised eyebrow.
YOUR ANSWER
Milagros Del Carmen,
Wilms' tumor. Now 16 years old.
AFTER I FOUND OUT I HAD CANCER THESE ARE HOW MY PERSPECTIVES IN LIFE CHANGED: I’m going to be honest with you; my life did not change at all after I was diagnosed with cancer in my left kidney. My life was the same; I kept being the same playful girl, smiling at life. Next to my family who was always supporting me and giving me strength, I kept going forward. I was never afraid of cancer. I fought for what I wanted. I kept going to schools and played with my friends. You can do it too. Don’t fear life. Keep moving forward and fighting for what you want.
YOUR ANSWER
I believe a real connection with another person is based on sincerity. And if that person does not understand that cancer is and was a part of your life, and if that period in your life was so important, maybe that significant other is not your best option. Regardless of the fact that the person we choose to be with did not have our same experience, we can still believe that at some moment in our life we will find out better half. That better half that will love and accept us just the way we are. Yoselin Rojas,
Wilms tumor. Now 20 years old.
THIS IS WHY I FEEL THAT I WON’T BE ABLE TO HAVE A ROMANTIC RELATIONSHIP WITH SOMEONE WHO UNDERSTANDS ME IF THEY NEVER HAD CANCER:
YOUR ANSWER
IF I NEVER FEEL LIKE MY OLD SELF AGAIN, HOW DO I EVEN DARE TO CONSIDER MARRIAGE? WILL I EVER FEEL THAT I WOULD BE ABLE TO AN EQUAL AND LOVING PARTNER TO MY SPOUSE? Ana Maria Polo
Breast Cancer. Now 55 years old.
You will have the strength to work and be in a relationship, and you will have the desire to work and be in a relationship because this is what makes us alive, keeps us alive. It makes us useful and being useful is a very important part of life, so you will want to work again. You will become healthy and strong, and I personally advise you to work on your job work on your relationships as much as you can, because cancer plays a very dirty game on your brain. It makes you feel that you are weak and that you are not capable of doing anything, but quite the contrary, you are capable of anything and going back to work will make you very strong. Will anybody hire you? Yes! People will hire you, because you have proven that you are a strong survivor. Will anybody love you? Yes! People will hire you, because you have proven that you are a strong survivor. If you are able to survive the treatment of cancer, you will be able to prove to yourself and to everybody else in the world that if you are strong enough to survive, you are strong enough to do the best job that anybody can do. So, yes, you will be hired and you will be loved and you will be the best employee or employer in the world.
YOUR ANSWER
Nahomi Rodriguez Rangel,
Ewing's Sarcoma. Now 17 years old.
I AM FIGHTING AS HARD AS I CAN TO BE FREE OF CANCER, BUT I’M WORRIED THAT MY PARENTS — AFTER ALL I’VE PUT THEM THROUGH—WILL NOT LOVE ME AFTER THIS, BECAUSE...
Well, having cancer implies you have a lot of strength to keep fighting and moving forward. I think you are being paranoid if you feel your parents will love you less. Parents always want what’s best for their children! They suffer with us but they overcome obstacles with us too. In my case, my mother was next to me at all times. She never left my side. I think that going through cancer changed our relationship; my mother takes care of me as if I was a five year old but I think that’s because at some point she felt she would lose me. That’s why I feel so lucky to have her care and love. Nowhere in the world are there parents that refrain from giving the love and care what a child needs to overcome cancer and help on a day to day basis. A father suffers, cries but also laughs, prays and begs God for a miracle in his child’s life. And since once God gave a father such happiness when his child was born, so too he will grant that happiness upon his healthy and speedy recovery.
YOUR ANSWER
THESE ARE THE THINGS THAT I AM DOING TO MAKE SURE THAT I MAKE THE MOST OUT OF MY CURRENT LIFESTYLE:
Stevens Duarte, Ewing's Sarcoma. Now 15 years old.
You will feel stressed and frustrated and that will make you feel different about your treatment. But in order to be happy, I recommend a change in lifestyle and perspective. I recommend thinking about your future. Reflection on every single one of your negative thoughts will help you change your life. It worked for me! I was super bitter, stressed and I hated receiving visits and seeing people. But I thought out every single one of my negative thoughts and everything changed. My life changed completely and I owe that to cancer.
YOUR ANSWER
WITH ALL THE CHANGES I MUST FACE WITH MY IMAGE, DAILY LIFE, AND LIFE PLANS, I HAVE TRIED THESE THINGS TO GIVE MY LIFE MORE STRUCTURE: Amanda Dure, Acute Promyelocytic Leukemia. Diagnosed at 21.
One thing that really helped me while I was going through treatment was that I got dressed every single day as if I was going somewhere. I know it doesn't sound like that much, but there were periods where I did not leave the house for close to three weeks at a time except for going to the doctor because I was so neutropenic and my parents did not want to risk my being exposed to germs. I easily could have stayed in my pajamas and wallowed, but for some reason, putting on an outfit as if to signify the beginning of a new day really helped. It made me feel like I wasn't just this sick person confined to my bed, but I was still me a person who liked looking nice and wearing dresses. If you have the energy as well, keep doing (to a small extent) whatever physical activity you did before you were diagnosed. I have always loved running, but when I was diagnosed with leukemia, I went into the hospital for one month straight. I immediately lost all muscle mass, but when I got out, I started running again. I could barely run half a mile without having to walk, but eventually I was run/walking about two miles a day. I tailored this to when my chemo treatments were more intense, but anything even resembling normalcy--for me, trying to stay in shape---really helped me. When I was running, it gave me the chance to listen to music and just zone out. Most importantly, I also did not lose sight of my pre-cancer life plans. When you are diagnosed, your life, as you know it, is absolutely put on hold, but that does not mean that you should give up on what you were looking forward to before. I was diagnosed the last semester of my senior year of college, and I had always planned to go to law school, and I had always wanted to move to Washington, DC. I saw this as the perfect opportunity to study for the LSAT so that I could accomplish my goals. It was extremely challenging at points to study with a chemo headache, or feeling weak, but I cannot stress enough how important it was to feel like there was a light at the end of the tunnel--so I suppose this sort of naturally flows into question number 2. A serious goal provides a serious distraction from what is physically happening to your body.
YOUR ANSWER
THIS IS WHY I FEEL THAT I WON’T BE ABLE TO HAVE A ROMANTIC RELATIONSHIP WITH SOMEONE WHO UNDERSTANDS ME IF THEY NEVER HAD CANCER: Pat Bruce Wayne
Testicular Cancer. Now 28 years old.
On June 4th, 2012, I learned that the pain and discomfort in my groin was neither a hernia nor a pulled muscle. After having an ultrasound screening, my doctor determined I had large tumor on my testicle that needed to be removed immediately. Once removed, it was confirmed that this tumor was in fact cancer. I went from competing in races, exercising every day, and being the healthiest I have ever felt at the age of 27 to sitting in an oncology unit with tears in my eyes and my head in my hands all within 48 hours. Like most cancer patients, I met with several oncologists to determine the best course of treatment. I remember on June 12th, 2012 being told that I would never be the same physically and that I would most likely get cancer again. This was devastating. Luckily, my father (also a cancer survivor) was with me and encouraged me to continue meeting with oncologists until I found one I was comfortable with. Dr. Feigert of Virginia Cancer Specialists is my oncologist and he is, in my opinion, the best at what he does. I went through chemotherapy and came back bigger, faster, and stronger than ever before. I just got married to the love of my life who stuck with me through this rough time and dedicate a large amount of my time to raising cancer awareness with young adults. While going through all of this, I experienced a full range of emotions. The strongest emotion, rightfully so, was anger. I was angry at the world. I was angry that I was stuck in my parents’ home while life moved on in the outside world. I felt like I was in the world of the sick while everyone else was in the world of the living. Everyone else did not have to worry about their health. Everyone else could go to work, see their friends, and seemingly never have to care about what happens next in their lives. I did everything right (ate healthy, exercised, etc.) and still wound up sick in bed with an uncertain future. I was supposed to be moving forward in my career, getting engaged to my girlfriend, and enjoying my life. Luckily, my friends and family would not let me stay angry. They would not let me sit in bed with self-pity. They would not let me slip in and out of sadness any longer. With their support, I was able to take this nightmare and turn it into something good. As strange as it sounds, I think having cancer was one of the best things that ever happened to me. Despite the ongoing checkups and the never ending worries about recurrence, I cope with my life challenges by reminding myself that I have been through worse. MY HOPE is to support others who are going through a similar or worse situation. I am now a part of a community of cancer survivors and want to do everything I can to raise money, spread awareness, and give hope to those who are suffering. As not only a cancer survivor but also a therapist, my mission is to help others heal.
YOUR ANSWER
THESE ARE THE THOUGHTS I HAVE BEEN HAVING ABOUT LIFE AND DEATH:
Ecuador Contra el Cancer (Ecuador vs. Cancer)
The healthiest way to confront all these thoughts is to keep a positive attitude. Think of other things that keep you busy, or do some activities that make you feel better. It is important to keep motivating yourself and also to relax. Allow yourself to process these thoughts naturally without any pressure.
YOUR ANSWER
Nahomi Rodriguez Rangel,
Ewing's Sarcoma. Now 17 years old.
THIS IS WHY I THINK IT IS OK TO BE AFRAID:
I wouldn’t call my feelings fear as much as uncomfortable since people don’t really understand what cancer, the treatments and the effects on people’s lives. When people see us in the street with our bald heads, or in my case, in crutches and without a leg, they stare but people don’t really know what we are thinking. I just want to tell you to live your life and don’t bother with other people who look at you funny. Keep going forward, if I could do it, you surely can too!
YOUR ANSWER
Ana Maria Polo
born in Havana, Cuba on April 11th,1959, migrated with her parents to Miami, Florida on May 1962. She obtained her elementary and high school diploma in Puerto Rico, where she also participated in several musical performances like "Godspell" and "Showboat". As a young woman, she was a "Jubilee's chorus" member and was invited by Pope Paulo VI to participate in the celebration of the Year of the Saints in 1975, singing in the San Prieto Basilica. Ana Maria graduated from Florida International University, with a Political Sciences baccalaureate and was admitted at the University of Miami, Law School where she received her law degree. Since 1989, Dr. Polo exercises her profession in Miami-Dade County, State of Florida. Ana Maria works as a family mediator in cases around her area. Ana Maria joined the CMQ Angel Martin radial show in 1991. She also worked as the family lawyer expert for the Maria Laria TV show, El Show de Cristina, Despierta America, Noticiero Univision, and America en Vivo. She also wrote family matter articles for the electronic magazine Obsidiana.com. Since April 2, 2001, Ana Maria Polo appears in Sala de Parejas, a show where participants find an opportunity to discuss all kind of marital problems and at the end of the show a solution is provided for them. Ana Maria has her offices in Coral Gables, Florida, where she takes care of divorce, adoption, paternity, custody, minors and spouse's maintenance, and domestic violence issues." Breast Cancer Survivor.
I WOULDN’T WISH CANCER ON ANYONE ELSE, BUT WHY ME? WHAT DID I DO TO DESERVE THIS? It is so typical and very normal, even a proper question to ask “why me”? Why did I get cancer? That question is a normal human reaction. I will answer you. Why me? …Because it could happen to anyone, we all are made of good and bad cells, and bad cells come up once in a while. It can happen to you, it can happen to anybody. There are a lot of risks and a lot of negative things in life. By just living we are a part of it, and sometimes we may have to experience those negative things. Cancer is an illness that can happen to anybody. Why me? because it can be any person at all. Don’t feel bad; it is a part of living, it is a part of what happens to a person when they are alive. Cancer is a reality that we must face.
YOUR ANSWER
IF I SURVIVE THIS CANCER, WILL MY OUTLOOK ON LIFE BE BETTER THAN IT IS TODAY? Ana Maria Polo
Breast Cancer. Now 55 years old.
Yes, your outlook will be better. Going through cancer is an experience that will take time for your body and your mind to comprehend. There will be times when you don’t know where you are, what is happening to you, what is going to happen tomorrow or even the next minute, or the next hour. But as you come out of the treatment and time passes, you will start feeling stronger and you will start changing the way you see things. You will realize how beautiful life is, how fragile and how strong we are at the same time. That will give you the gift of flexibility, and a flexible person is a person that adapts better to the changing rhythms of everyday life. You will have a beautiful outlook, and you deserve to because being a cancer survivor is an experience that really makes us appreciate the wonders of living. So hang in there, because you will be a happier person very soon.
YOUR ANSWER
You will have the strength to work, and you will have the desire to work because working makes us alive, keeps us alive. It makes us useful and being useful is a very important part of life, so you will want to work again. You will become healthy and strong, and I personally advise you to work as much as you can, because cancer plays a very dirty game on your brain. It makes you feel that you are weak and that you are not capable of doing anything, but quite the contrary, you are capable of anything and going back to work will make you very strong. Will anybody hire you? Yes! People will hire you, because you have proven that you are a strong survivor. If you are able to survive the treatment of cancer, you will be able to prove to yourself and to everybody else in the world that if you are strong enough to survive, you are strong enough to do the best job that anybody can do. So, yes, you will be hired and you will be the best employee or employer in the world.
Ana Maria Polo
Breast Cancer. Now 55 years old.
AFTER I’VE FINISHED THIS TREATMENT AND MY STUDIES, WILL ANYONE WANT TO HIRE ME, OR WILL I EVEN HAVE THE STRENGTH TO WANT TO WORK?
YOUR ANSWER
THE HOPEBOOK TEAM
Executive Director Daniel Simkin Ethan Wasserman Board of Directors Shai Barel Jacob Kashanian Editor & Chief Jack Strigler Research & Development David Gedallovich Melanie Hes Michael Imiak Shira Lasker Shimon Lindenblatt Graphic & Web Design Becky Cohen Jimmy Kalman Software Developer Michael Peres Finance & Fundraising Adam Levine Hospital Relations Benjamin Rosen Information Technology Eitan Miller Arman Davtian
HopeBook
is a non-profit organization dedicated to improving the wellbeing of young cancer patients. Our goal is to create an interactive diary, a Hope Book, which contains thought provoking questions that reveal to its readers the possibility of a brighter future. We compiled a list of questions that cancer patients may have so that survivors who overcame the same difficulties can give them their perspective post-cancer. If a teen going through cancer treatment sees that someone has gone through the same experience and was able to find love, finish their education and thrive, then, with a healthier frame of mind, they will feel that every goal is attainable. In addition to the making of this book, we hope to foster a sense of community among the patients through a private blog where they can express themselves in a safe environment. When someone is stuck in a hospital, they can lose hope. The purpose of Hopebook is healing; when they feel hope and belonging, their chances of recovery skyrocket.
CONTACT US
master@hopebook.org or visit HopeBook.org
SPECIAL THANKS Michael Marciano Dr. Augusto Pereira Dr. Isabel Pereira Ruty Fouzailoff Carlos Rubio Marti Rosa de Briceno ASOVEPANICA (Asociación Venezolana de Padres de Niños con Cáncer) (Venezuelan Assosiation for Parents of Children with Cancer)
Childrens Hospital of Caracas Fundación Jovenes Contra el Cancer del Ecuador (Youth Against Cancer from Ecuador Foundation)
GoodMaker Foundation Livestrong Foundation TedxUChicago Yeshiva University