As Stepping Stones' members, we do not need to be told that cancer is a family illness. During every phase of the cancer experience, we are reminded of this fact. Many times during our monthly meetings, we have talked about issues which relate to the effects of cancer treatment and long term survivorship on the family unit. Our most emotional conversations have often revolved around our concerns about our children. We worry about their deepest feeling and fears. We speculate about how our cancer diagnoses and subsequent treatment experiences have helped to shape our children's perceptions of themselves and of their world. Sometimes we feel guilty and angry that cancer has interrupted their childhood and forced our kids to lose their innocence and optimism prematurely. And quite naturally, we wonder what our children are thinking, and wish that somehow we could get inside their heads and hearts to see for ourselves how they are surviving the after-shocks of our treatments.
"She discovered with great delight that one does not love one's children just because they are one's children but because of the friendship formed while raising them." Gabriel Garcia Marquez
How does a parent's struggle with a chronic and life threatening illness alter the perceptions of a child? How do the children of BMT survivors deal with cancer and the transplant experience? How can we, as parents, make things easier for our young co-survivors?
What follows are the thoughts and feelings of the children of BMT survivors on a wide variety of topics in their own words. Listen with your heart.....
On the Challenge of Cancer Every stage of my mom's illness and treatment has been difficult for me. It has all been bad timing because it correlates with all of the important things that were happening in my own life. I know it sounds selfish, but that's how it was. She was transplanted for my first prom. She relapsed during my high school graduation. She was very ill when I went away for my first year of college....
Coming to terms with the idea that cancer is a chronic illness has been the most difficult thing for me. Understanding that it will be with me and my family for the rest of our lives is difficult to accept. There's so much questioning and uncertainty, especially about the future.
I wouldn't mind if my dad had cancer for the rest of his life, as long as it didn't interfere much with his life style or mine. If he felt great, but had cancer (which is sometimes possible), then that would be okay by me.
Having cancer doesn't matter as long as you can do everything you want to do. But when it starts to impede your life style; you have to bring it down to a level where you can live with it again. That's what my dad says....The way if I think of it is this: Going for the transplant was going for a cure and that was drastic. Now, since my dad's relapsed; he just goes in for maintenance, and maintenance is not as drastic as a cure. Right?
Having cancer is such a stigma in this society. I wrote a paper on it for a class in college. The name of the class was The Power of Language. I wrote on the power of that one word, cancer. Think about how that word is used. A cancer on the presidency, a cancerous growth on society. It's always used as a morbid death thing. Society makes it difficult for people to be optimistic about cancer.
What aggravates me is that people always have such a bad association with cancer. And everyone seems to feel like they have to tell me about their bad associations. It's like I'm a cancer expert because my dad's had a transplant. I listen to these people and say, "Well, that's sad. Your experience is very sad and I'm sorry for you."....But then I say, "Look at my dad. He has cancer and he's doing very well." Sometimes I try to single-handedly change people's cancer associations....It's pretty exhausting....
When people ask me, "What's your mom's prognosis?", I always say, "Well, it's the same as yours!"
I think prognosis is a horrible word.
Cancer is a chronic illness. In a way that's good news because you finally accept that you can't put living your own life off forever just because your parent is sick!
On the Subject of Friends The hardest part about your parent having cancer is that your friends don't really understand what you're going through. Your friends can't even begin to fathom what it feels like to see your mom or dad when he or she is that sick, like during chemo or the transplant.
One of my friends was angry with me for not spending a lot of time with her during the acute phases of my mom's illness. She didn't understand why when I came home from college on the weekends, I spent more time with my mother than with her....Then my friend's mom was diagnosed with breast cancer. She called me and said, "I'm so sorry for not understanding because now I know what it feels like."
Feelings and Fears I have been angry, not with my mother, but with the disease, and with the timing of the disease, because it forced my mom to miss so many important parts of my life. Why was she sick and transplanted during my sixteenth birthday? Why did she relapse two days before we were supposed to go to New York to see Miss Saigon? I was so angry. But I just kept it inside. I couldn't express my anger because she was so sick. I had to hold it together.
Since my dad's relapse, I walk around with the feeling of a calm before the storm, like, "Oh, what's going to happen next?...." I look at my dad all the time and I kind of try to judge how he is by the bags under his eyes.
It's not so much that I'm afraid my fa
ther's going to die as it is that I just can't imagine living without him. I can't imagine it, and I don't think I need to imagine it!....Everything I do and everything I see, I see my parents with me. I see my father as a zadie, a grandfather to my children. I really, really, really don't think he's going to die any time soon. Every time my mother needed treatment, it was a nightmare. So now, I'm afraid of the possibility that she might need treatment again. Even if the doctors or my mom say the treatment will be mild compared to the transplant; I'm terrified because I think it's going to be this big year long project where she's very, very sick and I have to stop my whole life to deal with it.
Sometimes I get very angry with my dad, especially when a treatment doesn't turn out the way I am expecting it to. I say, "Dad, you didn't try hard enough! What are you doing! Aren't you visualizing? What's happening? Get on it! Go meditate!" But then I feel really, really guilty and I get over it. It's like a cycle almost....Maybe my dad would think that something was strange if I didn't lose it and yell at him occasionally because I'd be being too careful with him.
I can't get rid of the feeling that I have to take care of things. I feel like a fixer even though I'm not and I can't possibly be....
Personal Side Effects I left the school of my dreams because my mom was sick. At the time, I never talked about my real reason for leaving. I made up so many excuses: I hated the school. The other students were snobby. I didn't fit in....But in reality, I loved the school. I just couldn't stay there. I felt like I needed to be home with my mother.
I hate it when my dad doesn't act like a dad. I remember seeing my dad throw up in the kitchen one morning. I think it was during the transplant. He was really sick and I was so disgusted. I was like, "Hello! You're my dad! You don't get sick! You hold my head over a toilet. I don't even want to think about holding yours until your very, very old. You're not supposed to be sick now. You're way too young!"
Cancer has definitely changed me as a person....
To this day I feel like I'm much more mature than my friends. I don't panic about a lot of their stuff. I feel like a lot of their problems aren't really problems. Sometimes I feel like saying, "Just shut up! You want to hear about problems, I'll tell you!"
I think I'm probably studying to be a nurse because of my mom's cancer.
Emotional Dependency Now, whenever I feel sick, I love it when my dad takes care of me. I like him to worry about me. During the transplant there was definitely a window of time when he just couldn't be my dad. And I hated that. So now I really love it when he's my father, when he fixes things and kills bugs, and packs up the car to take me back to school. And I love it when he says, This is my daughter and I'm going to help her do this and that. It's just so nice.... And I love to hear him make plans for the future.
My mom was sick when I was a teenager and I missed doing so many things with her, simple things like going to the mall, shopping together, things like that. Today, I'm 24 and I haven't moved out of the house yet. This morning my mom made lunch for me. She put my name on a lunch bag and she put stickers on it. And I loved it. I'm not ashamed to say I loved it!
A couple of weeks ago I think my dad knew I had been crying ...I can always tell when he knows that I'm upset because he'll come into my room and tuck me in and stuff like that. It's nice....
Relationships and Communications This weekend I was spending time with my best friend from high school. She had rented a summer cottage with her mom. I was listening to her complain, "Oh, my mom is such a pain!"....I say that too, but it's different for me. My friend will see her mom for two weeks and that will enough for her; whereas I'll spend an entire summer with my parents like I did this summer and have no problem with it. I think that my dad's cancer has made me feel much closer to my parents. It has made our relationship very strong.
My mom was on the phone the other night talking with someone in her support group. I overheard her conversation. She was saying, "Well, it hasn't bothered me in a couple of days." Hearing those words, right away I was in a panic. The minute she got off the phone, I confronted her. "What hasn't bothered you?", I asked.... I had to confront her immediately because I know she sometimes tries to keep things from my brothers and me. She tries to protect us. But we'd rather know what's going on with her. It's easier to deal with.
My dad and I have a code that helps me know how he feels. If he's feeling really good and strong, he'll say he's feeling "very excellent". I can pretty much tell how he is by the way he phrases his answers.
The upside of cancer is that if you have a young family; you're probably all going to grow into really close and strong relationships. Cancer does that for a family.
Coping Whenever I hear that my dad's going to need treatment, I get very upset. Then I calm my self down and I adjust. I try to think, Okay. What's going to change in our life? Then, I try to map out the treatment. Well, I think, if he has treatment in November, then he shouldn't start on a Thursday, because that might interfere with Thanksgiving. He should try to start on a Monday....
Sometimes I make myself think about a treatment period as if it's a school project, a seminar that meets once a week....
Even though I know that going through treatment isn't that bad, hearing that it's going to happen again is as hard as it was to hear the first time. It doesn't get any easier to deal with. And the wondering is horrible, always having it at the back of your mind. But once you get into the treatment; it's not that bad. It's kind of like writing a paper: You think about starting it, but you put it off. And when you finally do get started, you feel less anxious and you wonder, Why did I put this off for so long?....That's kind of how I look at my dad's treatments.
I honestly don't know how I cope. I just do!
More than coping, I think it's a matter of adjustment. It's surprising the things that you can adjust to when you haven't got a choice....
Memories Here's a crazy kid memory that I have of the transplant period. I was so sick of casseroles. Every day there was baked ziti. If I see baked ziti again in my life, I think I'll throw up! Between fast food and casseroles, my brothers and I finally said to my dad, "Can't we just have chicken and potatoes and vegetables that are not mixed together?" We had all these aluminum foil pans in the refrigerator and in the freezer. It was like when somebody dies and people send food over....
My mom said, "The second you get sick, you're going to Gram's." That was a big threat! I was like, "Oh no! Not Gram's!" I love my grandmother, but it really scared me to think I wasn't going to be able to live in my own home. The germ thing really bothered.
I never used to drink after people. That was my thing. When I was in middle school and my dad was getting chemo, I explained to my friends so many times, "You can't drink after me. I can't drink after you. My father's having chemo!" By the end of eighth grade when a new friend would come to sit with us at lunch and ask, "Can I have a sip?", my friends had it all by rote. "You can't drink after her. She can't drink after you. Her dad's having chemo." It was as if they were saying, "Pass the french fries!".... We were all so used to it by that time. My friends were like, "We don't want to drink your stupid chocolate milk anyway!"
I remember every part of my mom's illness. She was so sick. She had lost so much weight and she was high on morphine all the time. She didn't know what she was saying. She was just a little, bald, skinny baby on the couch. I had to cater to her as if she were a baby, I remember talking to her like, "Oh, how was your day?" One day she told me that she went bowling with Mr. Rogers! It was the scariest thing. Her knees were bigger than her thighs. It was just gross!...I can't forget.
I remember thinking, I have to hold it together because I have to take care of my little brother. And I worried about my dad. He was trying to do everything; taking care of us, visiting Mom, working....I felt like I had to hold it together for him too. We were all totally stressed. I remember....
Advice to Parents All I know is that from the time I was nine years old I thought I knew everything there was to know about cancer. But obviously I didn't. But I never felt like my parents were hiding anything from me, so somehow they must have told me what I needed to know. I always felt like I knew what was going on and I was never worried. Maybe once, in the beginning, I asked my dad, "Are you going to die?" He said no very emphatically, and I was like, "All right!" I was nine years old then. Now I'm twenty-one and I still believe him.
When I asked my mom if she was going to die, she said "I don't know!" That's because she really didn't know. She said, "I don't think so. I hope not! We'll go through this together."
I think the thing is to always be honest with your kids. Tell them what's going on. Allow them to go through whatever emotions they need to go through. Even if you know it's going to hurt them, tell them. Be honest. Let them work it through.
I don't see a down side to hoping and believing when someone is in cancer treatment. Even though I'm not my father, me having the attitude that nothing bad is going to happen, really doesn't do any harm. My thinking and hoping after each treatment, "This is it! We're done! We're good!", can't be harmful. I love having my hallelujah hopeful periods. They make things easier for me, and I think for my dad and mom too. Kids need to hope!
Every time my dad has steroids, even though I know they're only a temporary fix, each time he takes them, I still hope and wonder, Is this going to be the time they'll work forever? It can't be a bad thing to hope like this. I'm glad my dad doesn't stop me from hoping.
I think parents should give their kids hope. I don't see any downside to hope.
It's important to tell your kids' teachers about your situation. Don't tell your kids that you are doing this though. But do tell the teachers. They need to see your kids within the context of your disease because it does effect their behavior more than you know.
I was definitely much more fragile when my mom was in treatment. Some days all I had to do was drop a pencil and I'd cry. It's important for teachers and guidance counselors to know that.
I was in the seventh grade during my dad's transplant. In my science class we were taking each other's blood pressure. I was stressed out because my dad was in isolation; so my blood pressure was incredibly high. My teacher had no idea what I was going through. He embarrassed me in front the whole class. He said, "You have the blood pressure of an old person!" I was mortified and ran out of the classroom crying....It would have been nice if my teacher had known what I was going through....
My cousin's mom is having chemo for ovarian cancer. My cousin is a very immature teenager. I was trying to help her with it. I said, "My dad's had cancer for as long as you've been alive and look how great he's doing!" My cousin said, "Yeah, I know. My mom's going to be fine too. But how am I going to get home from school tomorrow?" Her saying that was a real eye opener for me. My cousin was much more worried about her day to day activities, about mundane things, than about her mom's survival. That's how it is with kids. They need to be reassured that their lives will go on and will be somewhat normal. They need to hear concrete things like, "You will have a ride to soccer practice. You will be fed...".
My little brother was adopted when he was four. He was told that his birth mom was too sick to take care of him because she was a drug addict and an alcoholic. Then, when my mother got sick, my little brother became a completely different person, very withdrawn. He thought he was going to be given away again. My mom had to sit down and tell him that no matter what happened to her, he would always be in our family. As soon as he heard that, he was fine....You have to imagine the stupid little things that go on in kids' minds, little basic things, and you have to talk about them. You have to answer questions that are never actually asked....
If you're the sick parent, spend a lot of time reassuring your kids that you're going to be okay. You can say there are going to be some hard times and that sometimes there will be extra people in your house; but you have to be hopeful because with hope comes everything else. You have to help your kids feel safe....
Advice to Other Kids Be honest. It's okay to feel guilty and angry. I remember being mad at myself for feeling angry. I thought I was being selfish. I tried to keep myself from my feelings. Now I know it's better to feel the feelings, not to run from them.
When your parent is in the middle of treatment it can be pretty scary. Your mom or dad might have that death bed look. It's okay to be scared, or cry, or need someone to talk to, because what you are going through is not a normal thing.
Everybody's every day life isn't like what you are going through; so your friends may not understand. Don't be surprised if they don't stick with you.
If you are upset, that doesn't mean you're not hopeful. You can be upset or afraid and very hopeful all at the same time. It's okay. However you feel is okay!
You are going to grow into a different person because of everything you're going through. I'm a totally different person than I started out to be.
When I'm worried about my dad, I talk to my mom; but I also talk to my dad. I don't mind asking him directly, "How are you feeling Dad?"
There's no general rule of thumb for dealing with a sick parent. I wish I could tell you exactly what to do, but I can't. It all depends on your relationship. You have to feel your way through certain situations.
Wishes and Dreams I'm wishing with my whole heart for a definite cure for cancer. The sooner it happens the better.
I wish I could somehow inspire all the doctors and nurses and scientists to work faster, to find treatments that are easier for people to go through....I guess what I'm really wishing for is that illusive cure.
My whole entire family is ready for the cure. That's our dream. We need our mom.
I can't wait for the day! No more cancer! It has to happen! I'm an optimist, but I think I'm a realist too. It will happen....You think?
Special thanks to the children who contributed to this article for their courage, honesty, generousity and trust.