Q&A

Webisode #1 – The Diagnosis

Q: Isabel was diagnosed with cancer because of a “weird pain in her elbow”. Is this how you know you have cancer?

A: Every cancer comes with it's own set of symptoms. Sometimes people can feel very tired, or maybe they find a lump that seems to hang around for a while. Most things are not cancer, but it's important to be aware of what feels right in your own body! If you have a weird pain that just doesn't seem to go away, then it's definitely worth asking your parents about.

Q: Isabel has a bone marrow aspiration and a spinal tap. What are those like?

A: A bone marrow aspiration is when a little bit of marrow (the source of all blood cells) is taken from your hipbone to see if cancer is present or has spread. A spinal tap is when a needle is inserted into the spinal canal to check the spinal fluid for any central nervous system involvement. As with the bone marrow aspiration, a spinal tap can be uncomfortable so ask your doctor if there are any medications he/she can give you to help ease the discomfort.

Q: Isabel's type of cancer was curable – are all cancers curable?

A: Unfortunately, not all cancers are curable. Luckily, medicine has progressed to a point that many cancers can be effectively treated. Even if there isn't a cure in sight, that doesn't mean that remission and having a happy life are out of the question.

Q: Isabel's doctor said that she didn't do anything wrong to cause her leukemia. Do they know why people get cancer?

A: For children and teenagers with cancer, there are a lot of unanswered questions about what causes cancer. Sometimes cancer can be genetic or environmental, but most of the time they just don't know why it happens.

Q: Do all chemotherapy drugs get injected at the hospital? Isabel said she used her central line for this.

A: Nope. Chemo treatments can be given in a hospital room, a clinic, or sometimes in special, comfy areas set up at a doctor's office. Depending on the chemo, sometimes drugs will be continuously administered even while you're at home. Oral chemo drugs and oral steroids can be taken at home as well.

Q: Isabel says that it feels like her life was taken away. How can you take charge and feel in control again?

A: It's important to stay positive and remain optimistic while going through treatment if you want to feel like you're in control of your life. No matter what your illness does to your body, you are still in control of your personal happiness. Keeping up with activities you enjoy, like reading or writing or spending time with friends and family could help tremendously.

Q: Isabel was scared of death. Is this normal?

A: There is no right or wrong way to react. Don't be afraid to cry, or to tell people how you are feeling; it takes enormous energy to hold in your emotions. Some people fear that if they talk about dying, that it will happen so they need to only have positive thoughts. Talking about your fears is healthy and helpful. It doesn't make them come true.

Q: How does chemotherapy work?

A: Chemotherapy is the medicine used to kill off the cancer cells. Unfortunately, in doing so, it also kills some of the good cells at the same time, which is why at times it will make you feel sick. Also, white cells, red cells and platelets can be destroyed too. This is why you have your blood counts checked frequently. There are medications that can help if you are prone to vomiting or nausea and to help keep your other cells from getting too low.

Webisode #2 – Telling Your Friends

Q: Are you supposed to tell your friends that you have cancer?

A: For some people, cancer is a very personal experience and they don't like to involve their friends. Other people, like Marcus, realize that having the support of good friends really helps - and they may even bring their friends along to treatments! You may find that you'll make new friends at the hospital who have cancer and they can give you lots of information, guidance, and support.

Q: Will I have to stop doing things I love to do like Marcus did when he couldn't play basketball?

A: Not necessarily. The best thing to do is to ask your doctor for advice – don't assume anything! If you don't have a central line to worry about and your blood counts look good, you may get the thumbs up. You need to listen to your body at all times: if you're playing a sport and feel a little low on energy, then stop to take breaks.

Q: Marcus made a home movie of his experience to show to his friends. What are other ways to tell your friends what you're going through?

A: You could always go the low-tech route and write a letter or e-mail to your friends about the experience. Sometimes poetry and song can express the way you're feeling better than normal speech ever could. Other kids make websites, blogs and journals to track their feelings and keep their friends up to date.

Q: What if some of my friends stop calling and feel weird about how I look?

A: Just because they don't know how to be there for you, it doesn't mean that they don't want to be your friend and stand by you. If for some reason a friend is too scared and seems to run away for good, you need to understand that it's not your fault. They just can't handle this kind of information, and the idea of you having a serious disease can be scary to them.

Q: What kind of stuff can I do if I can't play sports and do physical activities?

A: You can always challenge your mind with a good book, or stay up-to-date with schoolwork. Catch up on movies you've never seen or play music that puts you in a good mood. Be creative: do some artsy crafty projects and give them as gifts to the people who have been especially supportive. See if you can get lessons to play a new instrument. You'll have a lot of time to relax and explore your own thoughts, so why not take advantage of it?

Q: Marcus mentioned he got special treatment from friends and family. How can I get everyone to treat me like normal?

A: It can be common for everyone to “baby” you in the beginning. Remind friends and family that you want to be treated like before, but sometimes your activities and other things may be limited. If you want to stay active in things you were involved in before, but don't have enough energy, find out if changes can be made. And if you need something, don't be afraid to ask.

Q: How will I be able to catch up with homework when I can't be in school?

A: There will most likely be a time when you won't be able to go to school because of fatigue, the need for treatment or the risk of infection. During this time, you may be home-schooled or have a tutor come to your house. There may be times when you will not feel up to working and that's okay. Let your body rest and do what you can handle. If you can go to school, talk with your teachers and your guidance counselor or principal about your treatments. Sometimes you may need extensions. Don't be afraid let them know if you start feeling overwhelmed. Remember communication is key.

Q: What if people start spreading rumors about me when I miss school?

A: If you heard that rumors were started, call a friend and let them know the truth. Then ask the friend to start telling other people the truth. The best way to deal with negative rumors, as hard as it is, is to ignore it. If it really, really bothers you though, you can always call the school and ask a teacher or someone you trust to talk to the students directly.

Webisode #3 – Side Effects

Q: Marcus mentioned he didn't want to tell his parents how he felt because he was afraid of having to be admitted into the hospital. Do I have to let everyone know when I'm not feeling good?

A: Yes! It could just be a side effect of the chemo, but doctors also have to make sure you don't have an infection or another medical issue that might need medicine. They may provide special medications to help with your symptoms or even prevent them in the first place! There's no reason to suffer quietly when there can be help. You can't protect your parents from being worried about you, but you can assure them that you are taking care of yourself by letting them know when you are not feeling well and by becoming your own advocate.

Q: Does everyone vomit from chemotherapy?

A: The common belief is that everyone will be over the toilet and feeling sick the entire time they're on chemo. This is simply not true for everyone! Some people only feel sick for the first few days after their treatment, while others never even feel sick at all. With the current anti-nausea medications, things are getting much better for cancer patients today.

Q: If I feel sick, how long will the nausea and vomiting last?

A: It may last for days and then go away or it may last for months. There is a good possibility though that it will come and go throughout treatment. You may find some things work for you that you would have never thought of, like sucking on hard candies or putting a cool cloth on your head. When you are really nauseated, try drawing or reading, watching a movie or playing a video game to get your mind focused on something different.

Q: How can I remember to take my medications?

A: Try making the pill swallowing a part of your schedule. For example, if you need to take medicines in the morning, make a habit of doing it right after you brush your teeth. Make a daily chart for yourself or a checklist, or buy one of those day-by-day pillboxes and fill it once a week. Some people find watches set to beep at the time they are supposed to take their medicine -- as a reminder. Also, don't be afraid to ask your parents or friends to remind you..

Q: Marcus's appetite and tastes changed, will mine?

A: Maybe. Some people say that food tastes and smells different during treatment (even metallic), but usually people go back to normal when treatment is over. You may like or crave foods you never even liked before. If it doesn't bother your stomach and you don't have mouth sores, try adding seasoning to meats and vegetables or use spicy sauces to help bring back some flavor. When you are hungry, eat! But make sure to eat a healthy, balanced diet – a steady diet of chocolate ice cream, for example, isn't going to promote healing and recovery!

Q: Will I totally lose my appetite?

A: Your calorie intake is important, especially if you're getting ready to start a heavy cycle of chemo. Chances are during heavier chemo cycles your appetite will either decrease or disappear. If you go for a while without food, they might put you on something called TPN or total parental nutrition. This is given through IV and it is known as liquid nutrition. When you're in between cycles, load up on food.

Q: Marcus lost his hair, will I?

Q: Sometimes a person will only lose some hair and sometimes none at all. Chemotherapy aims to kill fast growing cells (cancer cells typically replicate wildly and quickly), and your hair is actually one of the fastest growing cells in your body. That's why head hair will often fall out but slow growing hair, like arm hair or even eyebrows, often don't. It's best to ask your doctor what to expect in terms of hair loss with the specific chemotherapy you are being given.

Q: Does hair grow back after chemo?

A: If you lose your hair (and some people don't!) it will grow back. It can be fun to watch it grow back in because it may grow back differently. Some people who had straight hair might end up with curly hair or vice versa. It may also be lighter or darker than before. As it is growing back, try out some new hairstyles!

Q: Is there a way to treat mouth sores?

A: When you have mouth sores, tell your doctor. They might be able to give you something called “magic mouthwash” that numbs your mouth so it won't be painful to eat. There also might be some medication to help them heal.

Q: Are there any long-term effects of chemo?

Chemotherapy and radiation therapy can have long-term effects on fertility for both men and women. There may be interventions to prevent these effects during diagnosis or the early treatment phase. If you're concerned or have questions, talk to your doctor. It's also important to have regular checks-ups and follow-up care with a doctor at a comprehensive cancer center.

Webisode #4 – When Your Hair Comes Out

Q: Why is the hair “down there” the first to go?

A: Since chemotherapy kills the fastest growing cells in your body, the pubic hair is usually the first to go – it is the fastest growing hair that you have! You may notice that your arm hair sticks around a lot longer because it doesn't grow as quickly.

Q: How long does it take for hair to start falling out? And how fast will it grow back completely?

A: The timeframe of losing your hair is different for everybody it can take a few weeks or even a few months. Some people never lose their hair, while others lose all of it. It'll probably start to thin out first and then the hair loss will gradually increase. Eyebrows may also fall out completely or may just thin out over time. Try not to pluck them too often as the hairs may not grow back until treatment ends.

Usually, once the intensive phase of chemo treatment is over, your hair will start to grow in – usually it will be really soft at first. It can take a while before it really starts to fill in as thick as it once was. For some people, hair grows back very quickly and for others it grows more slowly.

Q: What's the difference between a real hair wig and a synthetic wig?

A: Real hair wigs need to be washed frequently (like real hair) and need to be styled like real hair. They are also more expensive. People report that real hair wigs are extremely real looking and are worth the extra work. Synthetic wigs don't need to be cleaned as often and generally can't be styled (they'll just bounce back into position when they dry). Some people think they don't look as natural, but others think they look like you're having a great hair day every day!

Q: What can I do if people stare at me?

A: People can be very insensitive, but you also have to understand that being confronted with the reality of your medical situation can be unnerving for them as well. If someone's staring is making you uncomfortable, ask if they have any questions about your illness. By breaking the ice, you can take the tension out of the situation and maybe they'll learn something new. If you don't want to talk to them, just brush it off and smile back. Who cares if they have a staring problem?

Webisode #5 – Making Tough Decisions

Q: Isabel feels like she is dependent on her parents more than ever. What can I do to feel like I'm still in control?

A: Getting through this experience and making your own decisions will be an important part of your recovery. Parents may become very protective of their children during this time, so it's important to be honest about how you're feeling and figure out what you can do on your own and what you need help with. For example, if you are old enough to drive, go to your appointment by yourself or bring a friend instead of a parent. And remember, it's only temporary. As you get stronger and feel better you'll be able to do more on your own and you'll eventually gain your independence back.

Q: Why couldn't Isabel go to the prom when she got a fever?

A: If you get a fever during treatment, generally it means that there is an infection of some kind. It is not always a reason to be alarmed, but any fever should warrant a visit to the doctor just to make sure everything's okay. It's possible that you'll just need some immune system boosters as well as antibiotics before you're good to party again.

Webisode #6 – Celebrating Your Last Treatment

Q: Do all kids who get cancer go through chemotherapy?

A: Although many cancers that affect kids and teens require some kind of chemo, not every person with cancer will get chemotherapy. There are a few other treatments in addition to chemo or instead of chemo. One option is surgery, which would simply surgically remove the cancerous area. The other option is radiation therapy, where radiation is used to kill the tumor cells.

Q: Marcus didn't want to set himself up for disappointment if this treatment wasn't his last. How can you get over this feeling?

A: Regardless of what happens during the rest of your treatment, your last chemo treatment is a milestone! So what if there's more chemo down the line? Now you know how strong you are and that you survived it! Even if there has to be a “next time”, now you're prepared – you know what to expect. Try not to think about it as setting yourself up for disappointment later, try and be proud of what you accomplished today.

Q: What are some things you can do to celebrate or remember your last treatment?

A: Some people don't make a fuss about their last treatment. Often, patients will write a card to the hospital staff or bring in cookies. You could even bring friends with you to your last treatment so that they can better understand what you've been through. Like Marcus, many people want to celebrate with an “end of chemo” party. Some people decide they want to get involved with an organization or charity for their type of cancer so that they can help other people. Maybe you just want to go out and do something by yourself or go on a little vacation. The possibilities are endless! Have fun with it!

Q: If I want to learn more about my cancer, any late effects from the treatments I took, or insurance issues in order to be prepared for the future, where can I go for information?

A: You can speak to other kids through your hospital, support groups or even in online communities like Starbright World about their experiences. Your doctor and nurses are valuable sources of information, so always feel free to ask them any questions. The Internet can be a great resource, but it can also lead to misinformation -just because you find something on the Internet doesn't mean it applies to you. See the “Resources” section of this site for some great places to turn for information and support.

Q: Marcus said it's okay to cry, even for boys, but what if you don't want anyone to know how you feel?

A: Crying is nothing to be ashamed of, whether you are a boy or a girl. Chemo treatment can be very difficult, so it's always better to express your emotions than to bottle them up inside. You don't need to “be strong” just for the sake of your parents or other people. YOU are the one going through this, and others can't be supportive unless they know what's wrong and what they can do to help.

Q: Is it normal to have mixed feelings about your last treatment?

A: Undergoing chemo treatment has become a way of life for you for a while. To all of a sudden stop visiting the hospital on a regular basis and get frequent medical care might feel weird.

The important thing though is to not live in fear of the cancer coming back. If at any time you feel scared, confused and want someone to talk to, ask to speak with a counselor – your mental health is just as important as your physical health, and ending chemotherapy can be full of difficult transitions. Enjoy every moment of this new beginning because you worked hard to get to where you are now!

Coping with Chemo is a series of webisodes written by teens with cancer to help other teens dealing with cancer. Each webisode addresses a different topic -- getting diagnosed with cancer, side effects of chemotherapy and other treatments, telling your friends, and celebrating your last treatment. Coping with Chemo also has an FAQ resource section to answer many of the questions you, your friends and family may have.