National Cancer Institute When Your Parent Has Cancer A Guide for Teens U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Cancer Institute This Booklet Is For You If your mom, dad, or an adult close to you has cancer, this booklet is for you. Here you can read about what has helped other teens get through this tough time. Doctors, nurses, social workers, friends, and family are working hard to help your mom or dad get better. You are a very important part of that team, too. When Your Parent Has Cancer A Guide for Teens U.S. DEPARTMENT OF HEALT H AND HUMAN SERVICES National Institutes of Health In the weeks and months ahead, you may feel a whole range of emotions. Some days will be good, and things might seem like they used to. Other days may be harder. This booklet can help prepare you for some of the things you might face. It can also help you learn to handle living with a parent or relative who has cancer. Free copies of this booklet are available from the National Cancer Institute (NCI). To learn more about cancer or to request this booklet, visit NCI's Web site (www.cancer.gov). You can also call NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237) to order the booklet or talk with an information specialist. 1 How To Use This Booklet You may want to read this booklet cover to cover. Or maybe you’ll just read those sections that interest you most. Some teens pull the booklet out now and again when they need it. You may want to share this booklet with your mom, dad, brothers, and sisters. It might help you bring up something that has been on your mind. You could ask people in your family to read a certain chapter and then talk about it together later. We’ve put words that may be new to you in bold. Turn to the glossary at the back of this booklet for their definitions. Table of Contents This Booklet Is for You page 1 CH A P T E R 1 You’ve Just Learned That Your Parent Has Cancer page 5 CH A P T E R 2 Learning About Cancer page 13 HERE MOM— TAKE A LOOK AT THIS. CH A P T E R 3 LET’S SEE. Cancer Treatment page 17 CH A P T E R 4 HOW ABOUT SOME COMPANY? What Your Parent May Be Feeling page 25 CH A P T E R 5 Changes in Your Family page 27 CH A P T E R 6 SOMETIMES I FEEL LIKE THERE MUST BE SOMETHING WRONG WITH ME. LET’S TALK ABOUT IT. Taking Care of Yourself page 35 Wherever you go, CH A P T E R 7 go with all your heart. Finding Support page 41 —Confucius 2 3 However long the night, CH A P T E R 8 the dawn will break. —African proverb You and Your Friends page 47 CH A P T E R 9 Chapter 1 How You Can Help Your Parent page 51 CH A P T E R 10 You’ve Just Learned That Your Parent Has Cancer You’ve just learned that one of the most important people in your life has cancer. Do you feel shocked, numb, angry, or afraid? Do you feel like life is unfair? One thing is certain—you don’t feel good. For now, try to focus on these facts: After Treatment page 55 CH A P T E R 11 The Road Ahead page 61 CH A P T E R 12 Learning More on Your Own page 63 CH A R T A “I knew something was wrong the minute I walked in the kitchen. My mom was so quiet. Then Mom told me she has cancer. I felt like I was going to faint. I could barely hold the tears back. I felt so scared. I ran to my room and just sat on the bed for the longest time. I called my best friend and kind of lost it. —Sarah, age 16 Monitoring Tests page 66 CH A R T B Cancer Team Members page 68 § Many people survive cancer. There are nearly 10 million cancer survivors living in the U.S. today. That’s because scientists are discovering new and better ways to find and treat cancer. During this really tough time, it will help you to have hope. § You’re not alone. Right now it might seem that no one else in the world feels the way you do. In a way you’re right. No one can feel exactly like you do. But it might help to know that many teens have a parent who has cancer. Talking to others may help you sort out your feelings. Remember, you are not alone. Glossary page 70 4 5 § You’re not to blame. Cancer is a disease with various causes, many of which doctors don’t fully understand. None of these causes has anything to do with what you’ve done, thought, or said. § Balance is important. Many teens feel like their parent’s cancer is always on their mind. Others try to avoid it. Try to strike a balance. You can be concerned about your parent and still stay connected with people and activities that you care about. § Knowledge is power. It can help to learn more about cancer and cancer treatments. Sometimes what you imagine is actually worse than the reality. Your Feelings As you deal with your parent’s cancer, you’ll probably feel all kinds of things. Many other teens who have a parent with cancer have felt the same way you do now. Some of these emotions are listed below. Think about people you can talk with about your feelings. Check off all the feelings you have today: Scared “I used to be a real easygoing, happy person. Since my dad got cancer I started blowing up over little things. My counselor at school got me in a group of kids who have a mom or dad with cancer. Meeting with kids who are going through the same thing helps a lot.” —Aaron, age 14 IMy world is falling apart. II’m afraid that my parent might die. II’m afraid that someone else in my family might catch cancer. (They can’t.) II’m afraid that something might happen to my parent at home, and I won’t know what to do. It’s normal to feel scared when your parent has cancer. Some of your fears may be real. Others may be based on things that won’t happen. And some fears may lessen over time. Guilty II feel guilty because I’m healthy and my parent is sick. II feel guilty when I laugh and have fun. You may feel bad about having fun when your parent is sick. However, having fun doesn’t mean that you care any less. In fact, it will probably help your parent to see you do things you enjoy. 6 7 Angry II am mad that my mom or dad got sick. II am upset at the doctors. II am angry at God for letting this happen. INo one understands what I’m going through. IMy friends don’t come over anymore. IMy friends don’t seem to know what to say to me anymore. II am angry at myself for feeling the way I do. Anger often covers up other feelings that are harder to show. Try not to let your anger build up. Embarrassed Lonely We look at some things you can do to help situations with friends in Chapter 8. For now, try to remember that these feelings won’t last forever. II feel left out. II don’t get any attention any more. INo one ever tells me what’s going on. IMy family never talks anymore. Neglected II’m sometimes embarrassed to be out in public with my sick parent. II don’t know how to answer people’s questions. Many teens who feel embarrassed about having a parent with cancer say it gets easier to deal with over time. When a parent has cancer, it’s common for the family’s focus to change. Some people in the family may feel left out. Your parent with cancer may be using his or her energy to get better. Your well parent may be focused on helping your parent with cancer. Your parents don’t mean for you to feel left out. It just happens because so much is going on. What You’re Feeling Is Normal There is no one “right” way to feel. And you’re not alone—many other teens in your situation have felt the same way. Some have said that having a parent with cancer changes the way they look at things in life. Some even said that it made them stronger. 8 When you come to the end of your rope, tie a knot and hang on. —Franklin D. Roosevelt 9 Dealing With Your Feelings A lot of people are uncomfortable sharing their feelings. They ignore them and hope they’ll go away. Others choose to act cheerful when they’re really not. They think that by acting upbeat they won’t feel sad or angry anymore. This may help for a little while, but not over the long run. Actually, holding your feelings inside can keep you from getting the help that you need. Try these tips: § Talk with family and friends that you feel close to. You owe it to yourself. § Write your thoughts down in a journal. § Join a support group to meet with other teens who are facing some of the same things you are. Or meet with a counselor. We’ll learn more about these ideas in Chapter 7. It is probably hard to imagine right now, but, if you let yourself, you can grow stronger as a person through this experience. Does this sound like you? Many kids think that they need to protect their parents by not making them worry. They think that they have to be perfect and not cause any trouble because one of their parents is sick. If you feel this way, remember that no one can be perfect all the time. You need time to vent, to feel sad, and to be happy. Try to let your parents know how you feel—even if you have to start the conversation. ? “I just kept telling myself that I was going to let this experience make me— not break me.” —Lydia, age 16 hat m e s w most i “ S o m e t e the m helped to run or was x until kickbo austed.” h w a s e x age 16 I —Jed, 10 11 “After Dad got cancer, my big sister always seemed to be making excuses to get out of the house. One day, I just told her off. Instead of getting mad, she started crying. She said she couldn’t stand seeing Dad hurting. I told her I felt the same way. Now we talk more and keep each other going. It’s good.” —Jamie, age 13 Chapter 2 Learning About Cancer Learning about cancer will help you understand what your parent is going through. Knowing what cancer is and how it spreads may take some of the fear out of it. Some of what you have seen or heard about cancer may not apply to your parent. Most people feel better when they know what to expect. “When Dad told me he had cancer, I got really scared. Everything I’d always heard about cancer was just terrible. Then I thought, ‘Hey, what do I really know about cancer?’ The answer was, ‘Not much.’ So I started reading books and stuff on the Internet. My dad even told me that some of what I found on the Web wasn’t right for the kind of cancer he has. Cancer is still pretty scary, but I’ve learned that people survive it. I’m not so afraid anymore.” —Abdul, age 14 Here are a few things to remember: Experience is what you get when you need it. —Anonymous § Nothing you did, thought, or said caused your parent to get cancer. § You can’t catch cancer from another person. § Scientists are discovering new and better ways to find and treat cancer. § Many people survive cancer. by not having it 12 13 What Is Cancer? Doctors have found more than 100 different types of cancer. Cancer is a group of many related diseases that begin in cells, the body’s basic unit of life. To understand cancer, it’s helpful to know what happens when normal cells become cancer cells. Normally, cells grow and divide to make more cells only when the body needs them. This orderly process helps keep the body healthy. Sometimes, however, cells keep dividing when new cells aren’t needed. These extra cells form a mass of tissue called a growth, or tumor. Tumors can be benign or malignant. § Benign tumors aren’t cancerous. They can often be removed and don’t spread to other parts of the body. § Malignant tumors are cancerous. Cells in these tumors are abnormal and divide and grow without control or order. They can invade and damage nearby tissues and spread to organs in other parts of the body. The spread of cancer from one part of the body to another is called metastasis. Most cancers are named for the organ or type of cell in which they begin. For example, cancer that begins in the lung is called lung cancer. Some cancers do not form a tumor. For example, leukemia is a cancer of the bone marrow and blood. Why Do People Get Cancer? The causes of most cancers aren’t known. Scientists are still learning about things that may put people at a higher risk for certain types of cancer. These things include smoking, spending too much time in the sun, eating poorly, not getting enough exercise, and coming into contact with certain types of chemicals and toxins. Will I Get This Cancer, Too? Some kids worry that they might get cancer, too. While no one can tell the future, it is good to know that most cancers are not passed down from parent to child. You and your parent can talk to a doctor for more information. NORMAL CELLS ABNORMAL CELLS Can Doctors Cure Cancer? Every year scientists discover better ways to treat cancer. That means many people are successfully treated for cancer. However, doctors are careful not to use the word “cure” until a patient remains free of cancer for several years. Cancer treatment may cause a remission, which means that the doctor can’t find signs of cancer. But sometimes the cancer comes back. This is called a relapse or recurrence. Whether your parent can be cured of cancer depends on many things, and no booklet can tell you exactly what to expect. It is best to talk with your parent and his or her doctor or nurse. 14 15 Where to go for more information To learn more about the type of cancer your mom or dad has, visit the National Cancer Institute's (NCI) Web site (http://www.cancer.gov). You can also call NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237) to speak with an information specialist. All calls are free and confidential. Chapter 3 Cancer Treatment Many teens want to know what to expect during their parent’s cancer treatment. This chapter briefly explains different treatments, how they work, and their side effects. You will probably have more questions after reading this chapter. It may help to talk with your parents or ask if you can talk with a nurse or social worker. “Seeing my dad in pain was the worst. One day I just told him how bad I felt for him. He said that he actually looked a lot worse than he felt. I know he’s having a hard time, but knowing he doesn’t hurt as much as I thought he did made me feel a lot better.” —Ashley, age 15 How Does Treatment Work? Cancer treatment aims to get rid of cancer cells. The type of treatment your parent will be given depends on: § The type of cancer Courage is the first of human qualities because it is the quality which guarantees the others. —Aristotle § Whether the cancer has spread § Your parent’s age and general health § Your parent’s medical history § Whether the cancer is newly diagnosed or has recurred. Remember that there are more than 100 different types of cancer. Each type is treated differently. 16 17 Treatment follows a protocol, which is a treatment plan. But even if two people have the same type of cancer and the same treatment plan, it may not work the same way for both of them. This is because people’s bodies can react differently to treatment. TREATMENT CHART This chart describes six types of cancer treatment, how they’re done, and some side effects. Your parent may get one or more of these treatments. Depending on the exact treatment, he or she may visit the doctor during the day, or stay overnight in the hospital. What Are Treatment Side Effects? Side effects happen because the cancer treatment targets fastgrowing cells. Cancer cells are fast growing, but so are normal cells like the ones in the digestive tract and hair, for example. The treatment can’t tell the difference between fast-growing normal cells and fast-growing cancer cells. That’s why people sometimes get sick to their stomach and lose their hair when they have chemotherapy (one type of cancer treatment). Some side effects, like feeling sick to the stomach, go away shortly after treatment, while others, like feeling tired, may last for a while after treatment has ended. Write down what treatment your mom or dad will get: _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ Treatment What is it? How is it done? What may happen as a result? (side effects) Surgery Also called an operation • Pain after the The removal A surgeon surgery of all or part of operates to remove a solid tumor the cancer. Drugs • Feeling tired are used so that • Other side effects, the patient is depending on the asleep during area of the body surgery. and the extent of the operation. The use of high-energy rays or high-energy particles to kill cancer cells and shrink tumors Radiation may come from a machine outside the body or from radioactive material placed in the body near the cancer cells. • Feeling tired • Red or blistered skin • Other side effects, depending on the area of the body and the dose of radiation. Radiation therapy Also called radiotherapy Chemotherapy Also called chemo The use of medicine to destroy cancer cells Use the chart on the next two pages to find out more about different types of cancer treatment. The medicine can • Feeling sick to be given as a pill, the stomach or an injection (shot), throwing up or through an • Loose bowel intravenous (IV) movements or line. It is often not being able to given in cycles go to the that alternate bathroom between treatment • Hair loss and rest periods. • Feeling very tired • Mouth sores • A feeling of numbness, tingling, or burning in the hands and feet. Treatment chart continues on next page. 18 19 TREATMENT CHART (continued from previous page) Treatment What is it? How is it done? What may happen as a result? (side effects) • The side effects can be much like those from chemo and radiation therapy. In some cases, the side effects may be worse. In addition to one or more of the treatments described in the chart on the previous two pages, your parent will get tests to monitor the cancer and how the treatment is working. A list of common monitoring tests can be found in Chart A in the back of this booklet. Stem cell The use of transplantation stem cells Can be a bone marrow transplantation (BMT) or a peripheral blood stem cell transplantation (PBSCT) Stem cell transplantation found in either uses stem cells from the patient or the bone marrow or the from donors. In many cases the blood. This donors are family repairs stem cells that were members. The patient gets these destroyed by high doses of stem cells through chemo and/or an IV line. radiation therapy. A treatment that adds, blocks, or removes hormones from the body. Hormone therapy is especially useful to slow or stop the growth of some types of cancers. Biological therapy uses the body’s own defense system (the immune system) to fight cancer cells. Hormone therapy can be given as a pill, through an injection, or through a patch worn on the skin. Sometimes surgery is needed to remove the glands that make specific hormones. Things To Look For Some treatments may make your parent more likely to get an infection. This happens because cancer treatment can affect the white blood cells, which are the cells that fight infection. An infection can make your mom or dad sicker. So your parent may need to stay away from crowded places or people who have an illness that he or she could catch (such as a cold, the flu, or chicken pox). Because of this, you may need to: Hormone therapy • • • • Feeling hot Feeling tired Weight changes Mood changes. § Wash your hands with soap and water often to keep from spreading germs § Tell your parents when you’ve been around someone who’s sick or has a cold § Stay away from your parent if you get sick. The Waiting Patients may be given medicine in pills, through an injection, or through an IV line. • • • • Chills/fever Muscle aches Weakness Feeling sick to the stomach or throwing up • Loose bowel movements. Biological therapy Also called immunotherapy It’s hard to wait to see whether the treatment will work. Your parent’s doctor may try one treatment, then another. One day your parent may feel a lot better. The next day or week he or she may feel sick again. Treatment can go on for months or sometimes years. This emotional roller coaster is hard on everyone. During this time, remember that the treatment is working to stop the cancer and make your parent better. For more information about the people who will be treating your parent, see Chart B in the back of this booklet. 20 21 Who Can Answer My Other Questions? _________________________________________ Ask your parent or other trusted adults any questions that you have. Ask your dad or mom if it is okay to go with them to their appointment. Perhaps your parent can arrange for you to ask the nurse or social worker a few questions. To make things easier: Questions you might want to ask § What kind of cancer does my parent have? § Will my parent get better? § What are the chances I will get this kind of cancer, too? ? ? “I had questions but didn’t know who _________________________________________ to talk to. I asked my mom if I could _________________________________________ go with her to her doctor’s visit, and _________________________________________ she said yes. The first time I just sat _________________________________________ there. The next time the doctor asked _________________________________________ if I had questions—so I asked a _________________________________________ couple. It was easier than I thought _________________________________________ it would be.” —Katie, age 14 _________________________________________ _________________________________________ Questions about the treatment § What kind of treatment will my parent get? Will there be more than one? § How do people feel when they get this treatment? Does it hurt? § How often is this treatment given? How long will it last? § Does the treatment change how people look, feel, or act? § What happens if the treatment doesn’t work? § Where is the treatment given? Can I go along? § Bring a list of questions with you. § Ask people to explain things using simple words. § Ask for information to be repeated. § Ask the doctor or nurse to show you things on a model or draw a picture. Here’s space to write down your own questions: __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ It’s okay to ask these questions more than once. 22 23 Want To Visit? If your parent is in the hospital, you may be nervous about visiting them. Learn ahead of time how your parent is doing and what to expect. Remember that they are still the same person, even though they are sick. Don’t be afraid to ask them questions and share your thoughts. You can also call, write, and e-mail them. visit, but the really wanted to “I ’t nervous. I wasn ospital made me h ell and didn’t like azy about the sm cr I up to machines. eing Dad hooked se sed to visit, but I mis ade excuses not m en one day a im too much. Th h pital e over to the hos eighbor drove m n d my homework an ter school. I took af appy e. Dad looked h d some of it ther di e and that made m st watching me— ju be strange it was to forget about how Keisha, age 13 in this place.” — Chapter 4 What Your Parent May Be Feeling Knowing how your parent may be feeling could help you figure out how to help, or at least understand where he or she is coming from. You may be surprised to learn that they are feeling a lot of the same things you are: § Sad or depressed. People with cancer sometimes can’t do things they used to do. They may miss these activities and their friends. Feeling sad or down can range from a mild case of the blues to depression, which a doctor can treat. § Afraid. Your parent may be afraid of how cancer will change his or her life and the lives of family members. He or she may be scared about treatment. Your parent may even be scared that he or she will die. Where to go for more information To learn more about cancer treatment, visit the National Cancer Institute's (NCI) Web site (http://www.cancer.gov). Look for the booklets Chemotherapy and You, Radiation and You, or Biological Therapy, among others. You can also call the NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237) to speak with an information specialist. All calls are free and confidential. “My mom lost all her hair after chemo. She started wearing hats. People stared at us. I fel t really bad that I was embarrasse d to be with her. Then my mom jus t came out and asked me what I was thinking. When I told he r, she said she wasn’t crazy abou t the new bald look either, but that she was glad to be alive. Now I see my mom first as one very brav e woman. I don’t care who stares.” —Ming, age 16 24 25 § Anxious. Your parent may be worried about a lot of things. Your mom or dad may feel stressed about going to work or paying the bills. Or he or she may be concerned about looking different because of treatment. And your mom or dad is probably very concerned about how you are doing. All these worries may upset your parent. § Angry. Cancer treatment and its side effects can be difficult to go through. Anger sometimes comes from feelings that are hard to show, such as fear or frustration. Chances are your parent is angry at the disease, not at you. § Lonely. People with cancer often feel lonely or distant from others. They may find that their friends have a hard time dealing with their cancer and may not visit. They may be too sick to take part in activities they used to enjoy. They may feel that no one understands what they’re going through. § Hopeful. There are many reasons for your parent to feel hopeful. Millions of people who have had cancer are alive today. People with cancer can lead active lives, even during treatment. Your parent’s chances of surviving cancer are better today than ever before. All these feelings are normal for people living with cancer. You might want to share this list with your mom or dad. Chapter 5 Changes in Your Family Changing Routines and Responsibilities Whatever your family situation, chances are that things have changed since your parent got sick. This chapter looks at some of these changes and ways that other teens have dealt with them. Does this sound like your home? Are you doing more chores? ? Are you spending more time with relatives or friends? Are you home alone more? Are you asked to help make dinner or do the laundry? Are you looking after younger brothers or sisters more? Do you want to just hang out with your friends when you are needed at home? 26 Do what you can, with what you have, where you are. —Theodore Roosevelt 27 Touching Base When Things Are Changing Families say that it helps to make time to talk together, even if it’s only for a short time each week. Talking can help your family stay connected. Here are some things to consider when talking with: Brothers and sisters § If you are the oldest child, your brothers or sisters may look to you for support. Help them as much as you can. It’s okay to let them know that you’re having a tough time, too. “I’m doing § If you are looking to your older brother or sister for help, tell them how you are feeling. They can help, but won’t have all the answers. Try saying something like this . . . Let your parents know if you feel that there is more to do than you can handle. Together you can work it out. I KNOW. IT’S TOUGH FOR ME, TOO. the best job I can.” “How can we work together to get through this?” I am only one, but I am one. I cannot do everything, but I can do something. —Edward Everett Hale g. ad at everythin cancer, I got m “After Mom got watch my little ir that I had to to lose It wasn’t fa ke I was going d clean. I felt li mom how brother an ol and told my my tried to stay co it, but have chores, but ere. Now I still l, so hard things w nd’s after schoo er goes to a frie e. She little broth y mom’s awesom n go to soccer. M that I ca Brandon, age 15 understood.” — really 28 29 When the drumbeat changes, the dance changes. — Nigerian proverb Your parent who is well § Expect your parent to feel some stress, just as you do. § Your parent may snap at you. He or she may not always do or say the right thing. § Lend a hand when you can. Try saying something like this . . . Your parent with cancer § Your mom or dad may be sick from the treatment or just very tired. Or maybe your parent will feel okay and want your company. § Try talking if your mom or dad feels up to it. Let your parent know how much you love them. Try saying something like this . . . “How are you doing?” “Is there anything I can do to help you out?” Keeping Family and Friends in the Loop Is it getting to be too much to answer the phone and tell people how your mom or dad is doing? That can be a lot for anyone. Ask others to help you share news of how your parent is doing and what help your family needs. Maybe a relative or family friend can be the contact person. Some families use telephone chains. Others use a Web site or e-mail listserv. Growing Stronger as a Family Some families can grow apart for a while when a parent has cancer. But there are ways to help your family grow stronger and closer. Teens who saw their families grow closer say that it happened because people in their family: “I love you.” “Can I get you anything?” “I always took m y parents’ atten tion for granted. Bu t after Dad got sick, nobody paid mu ch attention to m e. I know everybod y has a lot to wor ry about, but it real ly hurt. Finally , I wrote a note to them. And they understood! I fe el closer to my parents now.” — Lisa, age 15 AM I DOING THE RIGHT THING? HOW ABOUT SOME COMPANY? § Tried to put themselves in the other person’s shoes and thought about how they would feel if they were the other person. § Understood that even though people reacted differently to situations, they were all hurting. Some cried a lot. Others showed little emotion. Some used humor to get by. § Learned to respect and talk about differences. The more they asked about how others were feeling, the more they could help each other. 30 31 Asking Others for Help You and your family may need support from others. It can be hard to ask. Yet most of the time people really want to help you and your family. People that your mom, dad, or you may ask for help: § Aunts, uncles, and grandparents § Family friends § Neighbors § Teachers or coaches § School nurses or guidance counselors § People from your religious community § Your friends or their parents. § (Add your own)_________________________________ Things people can do to help: § Go grocery shopping or run errands. § Make meals. § Mow the lawn. § Do chores around the house. § Keep your parent company. § (Add your own)_________________________________ Other ways people can help you and your family: § Give rides to school, practice, or appointments. § Help with homework. § Invite you over or on weekend outings. § Talk with and listen to you. § (Add your own)_________________________________ Your Relationship With Your Parents Your mom or dad may ask you to take on more responsibility than other kids your age. You might resent it at first. Then again, you may learn a lot from the experience and grow to appreciate the trust your parents have in you. See Chapter 7 for tips on talking with your parents. 32 33 Chapter 6 “I never used to get sick before Mom got cancer. But then I started getting headaches. My stomach hurt all the time, too. I started wondering if something was wrong with me. I talked to a nurse, and she said that stress can cause a lot of that stuff. She gave me some great advice and said I could talk with her whenever I wanted to. Slowly, I’m feeling better.” —Kira, age 15 Taking Care of Yourself It’s important to “stay fit”—both inside and out. This chapter offers tips to help you keep on track during this experience. Dealing With Stress Stress can make you forgetful, frustrated, and more likely to catch a cold or the flu. Here are some tips that have helped other teens manage stress. Check one or two things to do each week. Take Care of Your Mind and Body § Stay connected. I Spend some time at a friend’s house. SOMETIMES I FEEL LIKE THERE MUST BE SOMETHING WRONG WITH ME. LET’S TALK ABOUT IT. I Stay involved with sports or clubs. § Relax and get enough sleep. I Take breaks. You’ll have more energy and be in a better frame of mind. I Get at least 8 hours of sleep each night. I Pray or meditate. I Make or listen to music. § Help others. I Join a walk against cancer. I Plan a bake sale or other charity event to collect money to fight cancer. 34 35 § Avoid risky behaviors. I Stay away from smoking, drinking, and taking drugs. § Put your creative side to work. I Keep a journal to write down your thoughts and experiences. I Draw, paint, or take photographs. I Read about people who have made it through difficult experiences in life. Learn what helped them. § Eat and drink well. I Drink 6-8 glasses of water a day to help prevent fatigue. I In the evening, switch to caffeine-free drinks that won’t keep you awake. I Grab fresh fruit, whole-grain breads, and lean meats like chicken or turkey when you have a choice. I Avoid sugary foods. § Be active. I Play a sport, or go for a walk or run. I Learn about different stretching and breathing exercises. Did you know? § Exercise has been proven to make you feel better. Running, swimming, or even walking at a fast pace can help improve your mood. ? The best thing about the future is that it comes only one day at a time. —Abraham Lincoln 36 37 Take Steps To Keep Things Simple Staying organized can also keep your stress level under control. Here are some tips to get you started. § At home I Make a list of things you want to do and put the most important ones at the top. I Make a big calendar to help your family stay on top of things. § At school I Try to get as much done in school as you can. I Let your teachers know what’s happening at home, without using it as an excuse. I Talk to your teachers or a counselor if you are falling behind. Get help when you feel down and out. Many teens feel low or down when their parent is sick. It’s normal to feel sad or “blue” during difficult times. However, if these feelings last for 2 weeks or more and start to interfere with things you used to enjoy, you may be depressed. The good news is that there is hope and there is help. Often, talking with a counselor can help. Below are some signs that you may need to see a counselor. Are you: I Feeling helpless and hopeless? Thinking that life has no meaning? I Losing interest in being with family or friends? I Finding that everything or everyone seems to get on your nerves? I Feeling really angry a lot of the time? I Thinking of hurting yourself? Do you find that you are: I Losing interest in the activities you used to enjoy? I Eating too little or a lot more than usual? I Crying easily or many times each day? I Using drugs or alcohol to help you forget? I Sleeping more than you used to? Less than you used to? I Feeling tired a lot? If you answered “yes” to any of these questions, it’s important to talk to someone you trust. Read more about seeing a counselor or joining a support group in Chapter 7. 38 39 Having a good discussion is like having riches. —Kenyan proverb een me Things weren’t easy betw about and my dad. We fought cancer, everything. After he got e nurse I felt really bad. Then th t group. told me about this suppor end. I ended up going with a fri en I At first I just listened. Th through realized they were going at I was some of the same things th lpful and actually had some he re now advice. Dad and I talk mo e dumb and even laugh about th e 17 fights we had.” —Alex, ag DAD, I CAN’T BELIEVE WE ARGUED OVER ALL THAT STUFF, YOU KNOW? Chapter 7 Finding Support Don’t let being afraid of the way you feel keep you from talking to your parents, a counselor, or people in a support group. For many people, starting to talk is difficult. Some teens don’t have good relationships with their parents. Others are too embarrassed to talk about personal things. It can also just be hard to make the time to talk, with all that is going on. But you and your parents really can help each other. Tips for Talking With Your Parent Prepare before you talk. Step 1: Think about what you want to say and about some solutions to the problem. Think about how your parent might react. How will you respond to him or her? Step 2: Find a good time and place. Step 1: Step 2: Ask your mom or dad if they have a few minutes to talk. Find a private place—maybe in your room or on the front steps. Or maybe you can talk while taking a walk or shooting hoops. 40 41 Take things slowly. Step 1: Don’t expect to solve everything right away. Difficult problems often don’t have simple solutions. Work together to find a way through these challenges. Some conversations will go better than others. Talking With a Counselor I‘M NOT GETTING THROUGH TO MY DAD. HE DOESN’T SEEM TO GET IT THAT I’M ALWAYS SAD AND UPSET ABOUT MOM BEING SICK. WELL, WE’VE BEEN TALKING ABOUT THIS FOR A FEW MONTHS NOW. JENA, YOU KNOW YOU’RE MY BEST FRIEND, I KNOW, BUT THINGS DON’T SEEM RIGHT. RENEE. THIS YOU’RE SAD ALL THE TIME. IS PRETTY OR SLAMMING DOORS BAD. AT YOUR HOUSE. LOOK, I DON’T THINK YOU’RE CRAZY OR ANYTHING, BUT. . . HAVE YOU THOUGHT ABOUT TALKING TO A COUNSELOR? Step 2: Keep it up. Step 1: Don’t think you have to have just one big conversation. Have lots of small ones. Make time to talk a little each day if you can, even if it’s just for a few minutes. Step 2: WELL, IT MIGHT BE A GOOD IDEA. AT LEAST PROMISE ME YOU’LL GO INTO SCHOOL TOMORROW & TELL GUIDANCE. OR TALK TO OUR MINISTER. YOU HAVE TO DO SOMETHING. THIS ANGER AND SADNESS CAN’T GO ON. OKAY. I PROMISE. Sometimes. . . talking to friends is not enough. When you are having a hard time, it can be helpful to talk to a counselor or social worker. Jena listened to her best friend Renee and planned on talking to the counselor at her school. Other kids talk to social workers at the hospital. Going to a counselor doesn’t mean you are crazy. It shows you have the courage to see that you need help to get through a very tough time. 42 43 Why Go to a Counselor? Teens say it can be helpful to talk with someone outside the family—someone who doesn’t take sides. A counselor is a person who will listen to you. They will help you find ways to better handle the things that bother you and gain strength in your situation. Joining a Support Group Another good outlet is a support group. Some groups meet in person; others meet online. Some groups go out and have fun together. In these groups you’ll meet other teens going through some of the same things that you are. At first this may not sound like something you want to do. Other teens say they thought the same thing—until they went to a meeting. They were surprised that so many others felt the same way they did and had advice that really seemed to work. A doctor, nurse, or social worker can help you find a support group. Finding a Counselor § Talk with your mom, dad, or someone else that you trust. Let them know you would like to talk to a counselor. Ask for help making appointments and getting to visits. Sometimes the counselor will even let you bring a friend. the shadows fall behind you. —Maori proverb § Ask a nurse or social worker at the hospital if they know someone you can talk to. § Ask your guidance counselor at school if you can talk to him or her. TiP Don’t be shy about asking for help. You may think: “I can solve all my own problems.” However, when faced with tough situations, both teens and adults need support from others! Turn your face to the sun, and 44 45 Chapter 8 about school. raised me to care “Grandma h er, I had too muc after she got canc But as a lot to do to ind. And there w on my m I got home from care of her when take to slip. I told y grades started school. M on, r what was going guidance counselo d my s that had worke shared some thing and she t to never things star others. Now, whe for ce lk with my guidan get me down, I ta . e feel less stressed selor, who helps m coun e eps everything w best is that she ke What’s Nick, age 15 about private.” — talk You and Your Friends Your friends are important to you, and you’re important to them. In the past, you could tell “I still see my fr them everything. Now iends, but things are differ that your parent has ent now. A lot of what they cancer, it may seem like talk about seems kind of lame a lot is changing—even . They are into going to scho your friendships. Here ol dances or to the mall. Sometimes are some things to think I feel like an ou tsider. about: Your friends may not know what to say. § It is hard for some people to know what to say. Others may think it’s rude to ask questions. § Try to be gentle on friends who don’t ask about your parent’s cancer or how you are doing. § You may need to take the first step. § Try saying something like this . . . I worry a lot abou t my dad. Stuff like who wo n the basketball game ju st doesn’t seem important no w. Then I found out there wa s another kid at school whos e dad has cancer. I have mo re in common with him th an I do with friends I’ve known my whole life.” —Ham id, age 15 “Talking about what’s going on with my mom/dad is hard. I know that it’s not easy to ask questions. Is there anything you want to talk about or know?” 46 47 Your friends may ask tough questions. § You may not always feel like answering questions about your parent’s cancer or treatment. § Try saying something like this: “Talking about what’s going on right now is hard, but it’s nice of you to ask. The doctors are saying: [add in your own information here] . . .” § If you don’t feel like talking, try saying something like this... Your friends have their own lives. § It may feel like your friends don’t care anymore. It might seem as though their lives are moving on, and yours isn’t. It can be hard to watch them get together with others or do things without you. But try to understand that they have their “I miss hanging out together. own lives, too. They aren’t I know that I’ve had a lot facing the situation you are on my mind since my dad right now, so it may be hard got sick. I’m glad we’re still friends. for them to relate. Want to hang out Having Fun and Making New Friends Old friends Even though you may have a lot on your mind, you can still get together with your friends and have a good time. If you can’t leave home as much, ask if your friends can come over. Take time to relax. It’s good for you. Make a list of fun things you and your friends like to do together. Then do them! New friends A lot is happening to you right now. Sometimes old friends move on. You may not have as much in common as you used to. The good news is that you may find yourself making new friends. Kids who used to just pass you in the halls may now ask you how you are doing. Kids who you used to be friends with may enter your life again. Be open to new friendships. Going to support groups at the hospital or clinic is a good way to meet new friends. It helps to connect with people who are going through some of the same things that you are. Try to do fun things together. The break will be good for all of you! ___________________ ___________________ ___________________ ___________________ ___________________ ___________________ “Thanks for asking about my mom/dad but would it be okay if we talked about this later?” § You might want to try saying something like this... tomorrow?” 48 49 Dealing With Hurtful Remarks Unfortunately, some kids may say mean things. Others speak before they think and before they get the facts. No matter the reason, it can hurt when kids make jokes or say hurtful things about you, cancer, or your parent. Chapter 9 How You Can Help Your Parent Here are some things that others have done to help their parent at home. Pick one or two things to try each week. What can you do? § Ignore the comment. ? Help With Care Spend time with your parent. Watch a movie together. Read the paper to your parent. Ask for help with your homework. Give hugs. Say, “I love you.” Or just hang out in silence. Lend a hand. Bring water or offer to make a snack or small meal. § Say, “Hey, my dad has cancer. It’s not funny. How would you feel if it was your dad?” § Being bullied? Go to your teacher, principal, or guidance counselor right away. really go od “Some days I felt gs I could in about the little th er times th do for my mom. O g I could in there wasn’t anyth ith her. w do except just be ve to ha We didn’t always as quiet, w talk. Even when I uld sense co I think my mom a, age 16 my love.” —Vaness Do not protect yourself by a fence, but rather by your friends. —Czech proverb 50 51 One kind word can warm three winter months. —Japanese proverb Help by Being Thoughtful Try to be upbeat, but be “real,” too. Being positive can be good for you and your whole family. But don’t feel like you always have to act cheerful, especially if it’s not how you really feel. It’s okay to share your thoughts with your parent—and let them comfort you. Be yourself. Be patient. You are all under stress. If you find you are losing your cool, listen to music, read, or go outside to shoot hoops or go for a run. Share a laugh. You’ve probably heard that laughter is good medicine. Watch a comedy on TV with your parent or tell jokes if that is your thing. Also, remember that you’re not responsible for making everyone happy. You can only do so much. Buy your parent a new scarf or hat. Your parent might enjoy a new hat or scarf if he or she has lost their hair during treatment. Help by Staying Involved Keep your parent in the loop. Tell your parent what you did today. Try to share what is going on in your life. Ask your parent how his or her day was. Talk about family history. Ask your parent about the past. Talk about what you’re both most proud of, your best memories, and how you both have met challenges. Tape record, write, or draw these things. Ask to see old letters or photo albums. Keep a journal together. Write thoughts or poems, draw, or put photos in a notebook that the two of you share. This can help you share your feelings when it might be hard to speak them aloud. Help with younger brothers and sisters. Play with your brothers and sisters to give your parent a break. Pull out games or read a book with your siblings. This will help you stay close and also give your parent time to rest. 52 53 The journey of a thousand miles must begin with a single step. —Lao Tzu n’t take cer, I did n d got ca ff I had re my da Befo ll the stu “ n notice a ed to ope to really time ’ve learn e. But I appen in ing for m go things h cancer— ore. Bad y eyes m d getting m a ike my d ace, too. world—l this derful pl n retty wo of added t it’s a p bu een a lot b rned to e there’s ven whil , I’ve lea E ly our fami sure on pres more.” ery day e ev appreciat , age 18 Kenyatta — Chapter 10 After Treatment When your parent is finally done with treatment, you may feel a whole range of emotions. Part of you is glad it is over. Another part of you may miss the freedom or new responsibilities you had while your parent was getting treatment. You may feel confused that your parent still looks sick and is weaker than you expected. You may be afraid the cancer will come back. You may look at life differently now. All these feelings are normal. If you and your family are still feeling that life after treatment is harder than you thought it might be, you might want to talk to a counselor to get guidance through this time. Things may not go back to exactly how they were before cancer came into your lives. Getting back to your “old life” may take a long time—or it may not happen as you expect. Here are some things that others have to say about life after treatment. Do any of these kids sound like you? Caleb talks about the “new normal”: “Now that my mom is done with chemo and radiation, things are pretty different. My older brother drove her to treatment. It was my job to get dinner and help my little sister, Jada, with homework each night. Now that Mom is better, Jada doesn’t need as much help from me. For a while I was her hero. Look, I am glad Mom’s treatment went well, but getting used to her being up and about is, well, different. My mom says it will take time.” —Caleb, age 15 54 55 Sarah appreciates life more: “I have to admit it, before my mom got sick we fought a lot—over what I was wearing, who I hung out with, or why I wasn‘t nicer to my little sister. After my mother got cancer, we pulled together more. My sister and I got tight. She looked up to me to make sure we were going to be all right. Now stuff like painting my nails or wearing cool clothes don’t matter as much. I even help run a support group for kids at my school who have a sick parent.” —Sarah, age 17 Jake is glad to have his dad back home: What does life after treatment look like for you and your family? ? __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ “All I can say is that I never saw my dad cry until he finished his last chemo treatment. The doctors said they think they got all the cancer. My father was so emotional—glad to be alive. Then my mom and brother lost it, too. I have to say that I’m so glad my dad is better. I used to take him for granted. No more.” —Jake, age 16 Our greatest glory is not in never failing, but in rising up every time we fail. —Ralph Waldo Emerson 56 57 What If Treatment Doesn’t Help? If treatment doesn’t help your parent, you and your family will face even more challenges. Hearing that your parent might die is very difficult. You may feel many of the same emotions you felt when you first learned that your mom or dad had cancer. No booklet can give you all the answers or tell you exactly how you will feel. But when the future is so uncertain, teens say it helps to: § Make the most of the time you have. Do special things as a family. At home, make time for your mom or dad. Call and visit as much as you can if your parent is in the hospital. Write notes and draw pictures. Say “I love you” often. If possible, try to have some special times together. If you have not gotten along in the past, you may want to let your parent know you love him or her. § Stay on track. When people get bad news, they often feel like they’re living outside of themselves—that life is moving along without them. That’s why it’s important to keep a schedule. Get up at the same time each day. Go to school. Meet with friends. § Get help when you feel alone. Make sure you find people who can help you. In addition to your family, it may help to talk to a social worker, counselor, or people in a support group. Do you want more support and guidance? Cancer organizations can also help you during this very difficult time in your life. In Chapter 12, you’ll find some organizations to contact. ? “It was very hard to hear that my mom’s treatm ent wasn’t working anymore. She and I decided to make the most of each day. Some days we talk nonstop. Other times we just sit together and hold hands. But every day, I tell my mom how much I love her. You can’t be afraid to love. Not ever. I learned that.” — Emily, age 16 The past cannot be changed; the future is still in your power. —Hugh White 58 59 If Your Parent Passes Away, Know That... You’ll always have memories. Your parent will always be part of your life. Hold on to your memories of the good times. Don’t feel guilty that you’re not respecting your parent’s memory when you think about something funny that your parent did or said. By laughing and smiling you are bringing back just a little of what was so special about your parent. The pain will get less intense with time. At first the pain may be so strong that you might wonder whether you will ever feel happy again. Time has a way of healing. Not being sad every day doesn’t mean that you have forgotten your parent. It just means that you are starting to heal. Everyone grieves in his or her own way. Some teens grieve for their parent’s death by crying. Others get quiet and spend time by themselves. Some find that they need to be around friends and talk. Others get very angry. In any case, most people find it helps to keep a regular routine. There is no right way or wrong way to grieve. It’s okay to deal with loss at your own pace. Your parent would want you to be happy. Stay open to new experiences. Write about your thoughts. Make small changes that give your life new meaning. Life will change. Life won’t be the same as before, but it can be rich and full again. Keep believing this. Chapter 11 The Road Ahead It can be hard to stay calm when you aren’t sure what the future holds. You may be thinking—will my parent survive cancer? Will the cancer come back? Will life ever be the same? Will I laugh again? While no one can know the future, there are things you can do to make your life a little more stable: Keep talking and pulling together as a family. You may find that cancer has drawn you closer together and made you appreciate each other more than ever. Discover your own needs. Don’t let others tell you how you should feel. Allow yourself to cope at your "Don't get me wrong, own pace and in your I'm so glad that treatment own way. is Remember that you’re growing as a person. Many teens say that having a parent with cancer has made them more sympathetic, more responsible, and stronger. over. Seeing my stepdad so sick was hard to take. But now that he’s back home, well, bedtime is back to 10 :00, no more la te night TV , I have to say where I’ll be and when I’ ll be home ... basically, we're back to the old rules. " —Monica, age 17 60 61 Accept people’s help. Right now you may feel lonelier than you ever have in your life. But you are not alone. Family, friends, support groups, neighbors, and counselors are there to lend a helping hand, listen to you, and be there for you. Appreciate each day. Many teens who have a parent with cancer say that they learned to see the world more clearly. In time you may come to appreciate things you may have overlooked in the past. Maybe you have noticed that little things seem to have more meaning for you these days. Take some time to write these thoughts down, even if they seem small: __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ Chapter 12 Learning More on Your Own It's great that you want to learn more. Keep in mind that cancer treatments are getting better all the time. Make sure that what you read or see is up to date and accurate. Talk with your parent or other trusted adult about what you find. Share the articles or books you've found with them. Ask them any questions you may have. You can get information from: § Your school or public library Ask the librarian to help you find the information or support that you're looking for in books, magazines, videos, or on the Internet. § The Internet Use an Internet search engine and type in general words like "parent" and "cancer" together to get started. Keep in mind that the Internet has a lot of good information. It also has a lot of poor information and false promises, so you may want to check with your parent or another trusted adult about what you find. § Your parent’s hospital or clinic Visit the patient education office at your parent’s hospital, if there is one. Or, ask if you can go with your parent during their visit to the doctor—to learn more. Unfortunately, no booklet or person can tell you how everything is going to work out. Cancer is tough, and your life may never be quite the same. But in the end, you will get through it. Why? You’re strong. And you are capable—even if you don’t always feel that way. To know the road ahead, —Chinese proverb ask those coming back. 62 63 Help Is a Phone Call or Web Site Away Here are some places to contact for help. You can call them or visit their Web site for more information. National Cancer Institute (NCI) Cancer Information Service (CIS) 1-800-4-CANCER (1-800-422-6237) www.cancer.gov NCI offers accurate, up-to-date information on cancer for you and your family. Call the CIS to talk to an information specialist who can answer questions you or someone in your family might have. Or go to LiveHelp on NCI's Website to chat online with an information specialist. NCI can also help connect you with a support organization in your area. NCI offers many materials in both English and Spanish. People who are deaf may call a special TTY line at 1-800-332-8615. American Cancer Society (ACS) 1-800-ACS-2345 (1-800-227-2345) www.cancer.org By calling ACS, you can talk to a person who is a specialist in cancer information. You can call 24 hours a day to get your questions answered. The specialist may help you find information and other resources. CancerCare 1-800-813-HOPE (1-800-813-4673) www.cancercare.org CancerCare offers free information and support to anyone affected by cancer. Visit their online support group for kids who have a parent with cancer. Gilda’s Club 1-800-GILDA-4-U (1-800-445-3248) www.gildasclub.org Gilda’s Club provides a place for people with cancer and their families and friends to join with others to build social and emotional support. They offer programs like support groups, workshops, and social activities for people affected by cancer. Call Gilda’s Club to see if there is a location near you. Kids Konnected 1-800-899-2866 www.kidskonnected.org Kids Konnected offers friendship, education, and support for children who have a parent with cancer or have lost a parent to cancer. Someone is there to talk 24 hours a day if you have questions or if you just need someone to listen. The Wellness Community 1-888-793-WELL (1-888-793-9355) www.thewellnesscommunity.org The Wellness Community offers support, education, and hope to people with cancer and their loved ones. Call to find out if there is a location near you. 64 65 Appendix Chart A: Monitoring Tests TEST Biopsy PURPOSE Used to find out whether a tumor or abnormality is cancer. Benign means it is not cancer. Malignant means that it is cancer. Checks the blood to see whether the balance of the cells and chemicals is normal Collects a small sample of cells from inside a bone to be examined under a microscope Uses x-rays and a computer to produce threedimensional (3-D) images of the inside of the body PROCEDURE (What Happens) A doctor removes a sample from a person using one of two ways: with a long needle (needle biopsy) or by making a small cut (surgical biopsy). Blood test A nurse or technician inserts a needle into a vein, usually in the arm. Then he or she draws blood. A needle is used to remove a small sample of tissue from a bone (usually the hip bone). The patient lies flat on a table, which moves through a large tube while a series of x-rays is taken. Bone marrow aspiration CAT scan or CT scan (Computerized axial tomography) MRI (Magnetic resonance imaging) PET scan (Positron emission tomography) Spinal tap (Lumbar puncture) Ultrasound (Ultrasonography) X-ray Uses radio and magnetic waves to make images of organs and other tissues inside the body The patient lies flat on a table, which moves through a large tube while an MRI machine scans the body for several minutes. Uses computerized pictures of areas inside the body to find cancer cells The patient gets an injection and then a machine takes computerized pictures of areas inside the body. Collects a sample of the fluid inside the spine to be examined under a microscope A needle is used to remove fluid from the spine in the lower back. Uses high-frequency sound waves to make images of internal organs and other tissues inside the body Takes a picture of the inside of the body using highenergy waves A technician moves a small handheld device over an area on the patient’s body. An image appears on the computer screen. The patient is placed in front of the x-ray machine or lies on a table. 66 67 Chart B: Cancer Team Members TEAM MEMBER Nurse Nutritionist/ dietitian Oncologist WHAT THEY DO A health professional trained to care for people who are ill or disabled A health professional with special training in nutrition who can help with dietary choices A doctor who specializes in treating people with cancer. Some oncologists specialize in certain types of cancer or certain types of cancer treatment. Educates patients and families about illness Dispenses medicines for patients Teaches exercises and physical activities that help patients gain more muscle strength and movement A doctor who treats mental health problems, including depression, with medicine and talk therapy Talks with patients and their families about emotional and personal matters and helps them make decisions, but does not write prescriptions for medicines A doctor who looks at x-rays and other images of the body Addresses the spiritual and emotional health of patients and their families. This can be a chaplain, minister, priest, rabbi, imam, or youth group leader. Talks with people and their families about emotional or physical needs and helps them find support services A doctor who removes or repairs a part of the body by operating on the patient Patient educator Pharmacist Physical therapist Psychiatrist Psychologist Radiologist Religious or spiritual leader Social worker Surgeon 68 69 Glossary What the Terms Mean This list can help you learn some words that your parents or the doctors and nurses may use. Don’t be afraid to ask questions when you don’t understand what they are talking about. These people are there to help you, too. Benign: Not cancer. Benign tumors do not spread to the tissues around them or to other parts of the body. Biological therapy: Treatment to help the body’s immune system fight infections, cancer, and other diseases. It is also used to reduce certain side effects of cancer treatment. Other names include immunotherapy, biotherapy, or BRM (biological response modifier) therapy. Bone marrow: The soft, sponge-like tissue in the center of most bones. It makes white blood cells, red blood cells, and platelets. Cancer: A term for diseases in which abnormal cells divide without control. Cancer cells can invade nearby tissues and can spread through the bloodstream and lymphatic system to other parts of the body. These are the main types of cancer: • Carcinoma starts in the skin or in tissues that line or cover internal organs. Leukemia starts in blood-forming tissue such as the bone marrow. Large numbers of abnormal blood cells form and enter the bloodstream. • Lymphoma and multiple myeloma begin in the cells of the immune system. Sarcoma starts in bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue. • Cell: The individual unit that makes up all the tissues of the body. All living things are made up of cells. Chemotherapy: Treatment with medicines that kill cancer cells. Also called chemo. Chemo is most often given intravenously (IV) (through a blood vessel). Some chemo can also be given by mouth. Depression: A mental condition marked by ongoing feelings of sadness, despair, loss of energy, and difficulty dealing with normal daily life. Other symptoms of depression include feelings of worthlessness and hopelessness, loss of pleasure in activities, changes in eating or sleeping habits, and thoughts of death or suicide. Depression can affect anyone, and can be successfully treated. Diagnosis: Identifying a disease by its signs and symptoms. Hormone: A chemical made by glands in your body. Hormones move in the bloodstream. They control the actions of certain cells or organs. Hormone therapy: Treatment that uses hormones to slow or stop the growth of certain cancers, such as prostate and breast cancer. Immune system: Organs and cells that defend the body against infections and other diseases. Intravenous or IV: Injected into a blood vessel. • 70 71 Leukemia: Cancer that starts in blood-forming tissue such as the bone marrow and causes large numbers of blood cells to form and enter the bloodstream. Malignant: Cancerous. Cells from a malignant tumor can enter and destroy nearby tissue and spread to other parts of the body. Metastasis: The spread of cancer from one part of the body to another. A tumor formed by cells that have spread is called a metastatic tumor or a metastasis. Protocol: A plan for treating cancer. Radiation therapy: Treatment with high-energy radiation to kill cancer cells and shrink tumors. External radiation comes from a machine outside the body. Internal radiation comes from material put inside the patient near the cancer cells. Recurrence: The return of cancer after a period when it seemed to be gone. The cancer may come back in the same place as the first time or in another place in the body. Also called recurrent cancer. Relapse: The return of signs or symptoms of cancer after a period of improvement. Remission: During remission, the signs and symptoms of cancer go away or are less than before. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer may still be in the body. Risk: The chance of getting a disease. Something that may raise the chance of developing a disease is called a risk factor. Some risk factors for cancer include aging, a family history of certain cancers, using tobacco products, certain eating habits, being overweight, being exposed to radiation or other cancer-causing agents, and certain genetic changes. Side effects: Problems that can occur when cancer treatment harms healthy tissues or organs. Some common side effects of cancer treatment are feeling tired, pain, being sick to the stomach, vomiting, lower blood cell counts, hair loss, and mouth sores. Stem cells: Cells from which other types of cells develop. For example, blood cells develop from blood-forming stem cells. Stem cell transplantation: The use of healthy stem cells from the bone marrow or the bloodstream to replace cells that were destroyed by high doses of chemotherapy and/or radiation therapy. The transplanted stem cells may come from the patient or from donors. In many cases, the donors are members of the family. The patient gets the stem cells through an IV line. Support group: A group of people with similar concerns who help each other by sharing experiences, knowledge, and information. Surgery: An operation to remove or repair a part of the body. Tissue: A group or layer of cells that work together to perform a specific function. Toxin: A poison produced by certain animals, plants, or bacteria. Tumor: A mass of tissue that forms when cells divide more than they should or do not die when they should. A tumor may be cancerous (malignant) or not cancerous (benign). 72 73 X-ray: A type of high-energy radiation. In low doses, x-rays are used to spot diseases by making pictures of the inside of the body. In high doses, x-rays are used to treat cancer. Acknowledgments We would like to thank the many teens, scientists, and health professionals who assisted with the development and review of this publication. Make a list of any terms that still aren’t clear to you. Talk to your parents, doctors, nurses, or other trusted adults about your questions. __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ 74 75 No one knows the story of tomorrow’s dawn. —Ashanti proverb NIH Publication No. 05-5734 Printed September 2005