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Childhood Cancer Survivors


Many feel anxious when an anniversary date approaches or it is time for a medical checkup.


You may be surprised to find that your feelings about recurrence vacillate over time.


"I know, in my head, that this is just a cold. But my heart whispers, 'What if?'"


"If it happens, we'll deal with it--just like we did the first time."


Sometimes, visiting the hospital for blood work, x-rays, and an examination causes dormant feelings to erupt.


"Psychotherapy gave me better coping mechanisms and made me a better advocate for my own healthcare."


Anniversaries can be times of pain or joy, and sometimes an inexplicable mix of both.


They often struggle with the urge to be grateful for life, but grieve the many losses.


"[I]f my son had been hit by a drunk driver or in a hit and run, I would be allowed my rage."


"The more you try to deny your feelings about it, the worse it is."


A universal loss is the sense that the world is a safe place.


Symbolically, the person one hoped to become dies or undergoes great change.


"With other survivors we are able to articulate our fears, anger, and sadness."


Everyone gets blindsided by a reminder of the loss.


"What do you mean this won't ever really be over with?"


Some survivors worry that they are hypochondriacs....


Some survivors feel guilty that they survived when so many others did not.


"My life did not come at the expense of anyone else's."


Parents of survivors of childhood cancer also can have symptoms of post-traumatic stress syndrome.


"Whenever I enter an oncology clinic, I break into a cold sweat and my heart starts racing."


"The process of writing helped me crystallize my thoughts and size up my emotions."

Emotions


The following excerpt is taken from Chapter 2 of Childhood Cancer Survivors: A Practical Guide to Your Future by Nancy Keene, Wendy Hobbie & Kathy Ruccione, copyright 2000 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

After cure, you may be dealing with late effects from treatment as well as struggling to find a new "normal" in your life. You will probably experience a range of strong emotions as you adjust to your after-cancer life. These can include fear of recurrence, anxiety, guilt, and grief, as well as gratitude and joy. Knowing that other survivors and members of their families share these same emotions can help you feel less alone.

Fears of recurrence

Survivors and their parents experience the whole spectrum of feelings about possible relapse. Some people say they never think about it. They acknowledge it could happen, but they say, "I'll deal with it then." It appears that it is no longer a part of their daily, weekly, or monthly reality. Many feel anxious when an anniversary date approaches or it is time for a medical checkup. And some, even many years after treatment, still have nightmares or anxiety attacks that may interfere with daily life.
Matthew has his first post-treatment scans in twelve hours. I'm freaked out and can't sleep. Every time I think about it, I feel the bile rising. I have been watching his every little move and complaint, and each time I'm convinced that it must be a relapse. If he walks in saying, "Mommy, my toe hurts!" I think, "Oh, no, relapse!" But then I have to stop myself, calm down, and recognize that it's only a stubbed toe. Then I count how many bruises he has--how many are just from playing outside and how many are from low platelets? I even checked his temperature yesterday because I was convinced that he had a fever--it was 98.2. He was cold. I think I'm going nuts!

This is really hard, being off treatment. I feel like I'm just waiting ...waiting ... waiting ... and holding down the vomit. Of course some members of my family say these great things like, "I'm sure it will be just fine," or "You just aren't accepting the fact that he is a normal, healthy kid now." How am I going to even make it through the day? How do I respond when the scans come back clear? Will I scream for joy? Cry? Laugh? Oh God, what if they aren't clear?

•  •  •  •  •  

It's been four years since my osteosarcoma was diagnosed and I don't even think about relapse. Relapse happens most often in the first year, so the farther out I get the less likely it is to occur. But, honestly, I never really worried about it.

You may be surprised to find that your feelings about recurrence vacillate over time. You may go through a period of fearfulness followed by a long time when you do not think about cancer. One mother said, "Funny how you think you've got the fear under control, then something happens and you again feel your head swimming, stomach churning, and your legs becoming spaghetti." It's perfectly normal to be at different places of this spectrum at different times.

I was just thinking that this state of vigilance and worry never seems to go away. I know parents of kids who are years out of treatment seem to do better with this, but it's not easy. Even when things are going well and you're sure it's just a cold, that worry is there. The thought in the back of your head says, "What if it isn't just a cold?" I look forward to the day when that thought in the back of my head is not my first thought when my son is sick. I know it will come.

In the last week, my teenage son, who is three months off treatment, has had a decreased appetite and been very tired. I know he's worried about the "what if " question, but hasn't voiced it. He's just extra quiet, so we've mentioned that he probably just has a cold or "bug" that's going around and needs more sleep (what teenager doesn't?). But we all know, that somewhere in all of our heads, there are bells ringing. I know, in my head, that this is just a cold. But my heart whispers, "What if?"

•  •  •  •  •  

My daughter is twelve years out from a diagnosis of average risk ALL. She is doing just great. But last week I noticed bruises on her legs and I flipped right back into that fear and panic. I thought, "Oh, my God, it's back."

•  •  •  •  •  

Seven years ago my daughter was diagnosed with leukemia. I had panic attacks while she was on treatment, and periodically during the first year off treatment when she was most at risk to have a recurrence. But those fears gradually just faded off my radar scope. I don't think about it at all--it's just no longer part of my life. I realize there is a tiny chance it could come back, but it just doesn't concern me. If it happens, we'll deal with it--just like we did the first time.

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My AML was cured fifteen years ago with chemotherapy. There are good things and bad things that came out of it. I'm very careful when I drive because I know I can die. This is good. I also grew as a person, and also realize that cancer is not the only thing in life. I do not worry about getting it again.

•  •  •  •  •  

I'm 14 and had brain cancer when I was 8. I never worry about it coming back, but I'm reminded of it every day when I trip over something because of my visual problems. The brain tumor connects to the vision problem, but the vision problem is the only thing that bothers me today.

You may not normally be bothered by fears of relapse, until your annual follow-up appointment draws close. Sometimes, visiting the hospital for blood work, x-rays, and an examination causes dormant feelings to erupt. This is a very common phenomenon, and each survivor has individual ways to deal with these normal feelings.

I was incredibly embarrassed the first time I walked into the follow-up clinic with my daughter. I hadn't been in a children's hospital for over three years, and I thought I had worked though all of my strong feelings about her treatment. But the first bald kid I saw crying about an "owie" caused me to just break down in tears. I felt all the craziness that I felt back then just well up and spill out. I could barely talk and I was mortified. The only person who seemed comfortable with my feelings was the social worker who told me that I was experiencing a perfectly normal post-traumatic stress reaction. My daughter just pretty much shut down and wouldn't talk to anyone. Afterwards, she just said, "Mom, let's walk around outside for a while and we'll both feel better."

Some survivors and their parents find that they continue to have deep fears over an extended period of time. If you find that these concerns interfere on a regular basis with your daily life, get some mental health support. Individual or family counseling and support groups help to dispel isolation, share suggestions for dealing with survivorship issues, and can help channel strong feelings in constructive ways. Mental healthcare professionals can help you prevent problems from arising or deal with them if they do appear.

The concerns about relapses haunted me through most of my young adult life, and it was only with outside help that I was able to put to rest the more troubling aspects of these worries. Psychotherapy gave me better coping mechanisms and made me a better advocate for my own healthcare. I got to be a better observer of my symptoms with a better balance between realistic health concerns and what I call my more neurotic concerns. I also was able to overcome my hospital and needle phobia, both of which developed during my initial treatment. Mastering those two fears was a wonderful thing, especially since my career has often found me in hospital settings.

Anniversary reactions

Anniversaries can be times of pain or joy, and sometimes an inexplicable mix of both. There are different anniversaries for everyone: for some it is the date of diagnosis, while for others it is the last day of treatment. Some survivors celebrate the five-year remission date. Whether or not any of these anniversary dates are "marked," they are likely to touch off some kind of emotional reaction--and this is normal. One mother of a teen with cancer said, "I think that whenever we touch the same place in the circle of the year, we stop and look around us to see the different shapes and colors of reality. And it often takes our breath away."

For families of survivors with few or no long-term effects from their treatment for cancer, anniversaries are sometimes forgotten and sometimes celebrated. Some families file the memories away and skip rituals that tie them to the memories of hard times. Others remember and give thanks for their life and good health.

I was diagnosed a couple of days before my dad's birthday and had my port surgery on that day--February 7. But I don't think about that on his birthday anymore. My family actually celebrates a "cancer-free" day every year on the date of my last chemotherapy. Now that I'm in college, they usually send me flowers. I also send an email out to all my friends that says something like, "Three years--Yay Erin." I get lots of congratulations emails back.

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Some memories are so clear and just never fade with time. I was diagnosed with Hodgkin's disease in 1972. I can remember exactly what I was doing when I found the enlarged lymph node that led to my diagnosis. And I remember exactly what I was wearing when the doctors told me I had HD. And I remember exactly what my fiancé said after we walked out of the doctor's office. And what my parents' faces looked like when they came out of the office and walked back across campus with us. So when Christmas rolls around I find myself with thoughts that stray to these very vivid memories. Hard not to.

Families of survivors with numerous or serious late effects from treatment may have more evident daily reminders of their anniversaries. They often struggle with the urge to be grateful for life, but grieve the many losses.

I guess it's not surprising or novel that I have mixed emotions about this anniversary. First and foremost I am out of my mind joyful that he is still here with me, cancer-free, able to talk and walk and sing and do every little thing that I will never take for granted again.

But then there are the constant reminders of all that he has lost, and I know I need to somehow and finally come to grips with those losses, but I don't have the capacity to do that yet, it seems. When we are in a crowd, and maybe he is five feet from me, and he looks around for me, I know he can't see, because he doesn't know which person is me until I say his name and wave. This is unbearably sad for me.

My son was singing songs at 6 months old, he was a leader in his day care, the biggest, most advanced kid in any group of peers, running laps at 20 months. And today people see this big kid who looks older than he is and who acts kind of clingy, limps, seems a bit slow, doesn't look you in the eye, doesn't pay attention, can't catch a ball, or run. I just still want to grab the world by the lapels and shake it and scream.

But because it's cancer, I'm supposed to be just completely happy with the situation (which I am, at the same maddening time). But if my son had been hit by a drunk driver or in a hit and run, I would be allowed my rage. I'd be validated in my hatred for the person who caused this ruin in our lives.

Are these anniversary rantings? Oh, I think they're everyday rantings, but because it's anniversary time, they're just so much more intense. I'm beginning to think that anniversaries just sharpen the point of the pencil, and make the lines finer and the words sharper.

Sometimes it is not a specific date, but an entire month or season that is fraught with significance.

Before 1988, our family had good associations for the month of August. Kimbra and all her cousins were born in August, and each of their dads were born in August. Each year we would have our big family picnic and celebrate everyone's birthday. My grandparents also had their wedding anniversary in August.

In 1988, Kimbra was diagnosed with cancer. She had chemotherapy, radiation, and surgery. We got bad news on her birthday and her dad's birthday, so August now has some bad memories. However, the important thing is that we have August days to celebrate her still being with us. When the anniversary dates evoke bad memories, we try to cancel them out with lots of big hugs.

Cancer affects everyone in the family--often in different ways. Family members need to share their feelings so that they create their own rituals to cope with or celebrate anniversaries. And each decides when it is time to continue the tradition or let it fade into the past.

My daughter is 7 and was diagnosed at age 3 with Wilms tumor. We celebrate her remission date every year. This year, we went to the hospital to say thank you to her doctors, then met some TV people who did a piece on childhood cancer, and then to Chuck-E-Cheese. It was a full, happy day. I wondered if I shouldn't just let the memories slip away and stop celebrating. I asked my daughter what she thought, and she said, "So many people worked so hard to save me that I think it is important to remember."

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The diagnosis anniversary has always been hard for me. The way I deal with it--at least since I figured out what the problem was--is to try to cut myself some slack for those days. I eat my favorite meals, watch favorite movies plus ones I want to see for the first time, spend a lot of time basically just doing what I want when I'm not at work. I consider it my way of celebrating the fact that I'm still here after ten years and of "defying" Hodgkin's--blowing raspberries, if you will

The more you try to deny your feelings about it, the worse it is. Give in and you might be surprised at how much better you feel. I cry less when I let myself do what I want instead of holding myself to the same standards as the rest of the year.

Grief and loss

Although survivors were able to grab the ultimate "gold ring"--life--they often suffer losses in the process. Losses come in all shapes and forms and may continue to exist for many years, or even a lifetime. A universal loss is the sense that the world is a safe place. Childhood cancer robs the entire family of that blissful belief in the natural order of things--that children will have a happy and carefree childhood and that children never die before their parents.

Treatment for childhood cancer also can result in the loss of abilities, life prospects, skills, or body parts. A star baseball player can be relegated to the bench. A skier might lose his leg. An "A" student might discover when she returns to school that she is no longer gifted in mathematics. And grief over the loss of friends seems universal. Not only must the survivors cope with physical changes, but the alteration of their self-image as well. Symbolically, the person one hoped to become dies or undergoes great change.

I was 16 years old and on the national championship hockey cheerleading team when I was diagnosed with osteosarcoma. I never went back to high school, and I'll never cheerlead again. I had an allograft and a total knee replacement. I can't kneel, sit cross-legged, or bend my knee all the way.

The feelings most often associated with the normal grieving process are denial, anxiety, fear, guilt, depression, and anger. These perfectly normal feelings are sometimes viewed by others as a problem when they are actually a natural response to a life-changing event. It is important and necessary to acknowledge these feelings in order to deal with what cannot be changed. You need to separate from what you have lost in order to move on. If you do not grieve for your lost dreams or abilities, you can get stuck in the past.

In the hubbub of packing this week for vacation, I came upon Nicholas playing in his room with Mr. Potato Head and his potato head pals. The Big Spud was lying down, without arms or feet, and Nick was crying. I asked what was wrong, and Nicholas said he and the little pals were crying because "Mr. Potato Head died since his bone marrow transplant didn't work right." Damn, a 5-year-old's play pals shouldn't be dying from failed BMTs. I hate this disease.

Part of resolving grief involves sharing it with loved ones. In our society, expressing these feelings is often socially unacceptable. Survivors and parents struggle to balance gratitude for life with sadness over the losses. However, parents and survivors may not view these in the same way and conflicts may arise, creating an inability to use each other for support.

I feel that having a life-threatening illness, being treated for it and surviving, can trigger strong emotions--anxiety, fear, anger, and sadness. If these feelings aren't acknowledged, addressed, and treated, they can over time evolve into more chronic problems like panic disorders and depression.

Most of the psychosocial literature says that survivors as a group are pretty well adjusted, that we marry, work, and raise children if we can have them. And that most of us seem to have come to some terms with our illness. But I have to say that my experience, both personal and from having talked with so many survivors, differs. It is not that we aren't well adjusted, but that we have paid an emotional price for surviving and that we seldom meet non-survivors who get it. To the world of non-survivors we present a face that is strong, mostly good natured, thankful, and grateful. With other survivors we are able to articulate our fears, anger, and sadness.

Relatives, friends, and professionals who work with families of children who've survived childhood cancer need to recognize that grief over loss is very similar to the grief one feels when a loved one dies. They need to listen, understand, and support the legitimacy of these feelings. Suffering is diminished when it is shared.

Parents of children who were treated at a very young age have a need to grieve about things their child may not even be aware of.

I think the little kids with significant side effects soon learn they are different but don't remember who they were. Well, we do. We remember those carefree days with kids who glowed with health and good spirits. We know the price we paid, and it's incredibly painful. Yet we also know how lucky we are and feel that we should be grateful instead of grieving. It's a hard road.

In some cases, radiation at a young age can cause a change in personality, so it may seem as if the child you knew and loved disappeared, and a new child replaced him.

It's so hard to talk about losing part of who your child was. I keep feeling I should be grateful for her life, but I'm grieving--by myself--for her losses. And it's not getting any easier. I have huge worries about whether she will ever be able to live independently. And I've never talked to anyone about it, nor have they asked. I mean, what a thing for a parent to deal with. We went from having a bright kid full of promise to a kid with major problems with basic life skills. I dreamed she'd go to college, maybe get married, move away, take care of herself. And now I don't know what's going to happen.

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My son has several disabilities from his treatment for a brain tumor. I don't know how much will improve or get worse. I lost the child I had before. I told a friend once that the child I brought into the hospital was a different one than the one I brought home. It shocked her, but I realized I really needed to grieve that loss. I'm not saying that I love him less, just that we all suffered a big loss.

You may find that at different ages, you view and feel your losses differently. A child of 10 may understand that his learning disabilities were the price he paid for cure from cancer, but a 20-year-old in college will probably have very different feelings as he is making career choices that may be affected by his disabilities. Similarly, a teenage girl may view potential infertility differently than an adult woman in love who is discussing marriage.

You can grieve fully, but later on still, on occasion, be stunned by a wave of grief. Everyone gets blindsided by a reminder of the loss. Stressors that can cause feelings to erupt are anniversaries, routine medical tests, or even a smell. Returning to the clinic for an appointment, developing an illness, or discovering a late effect can arouse strong feelings. The upsurge of physical or emotional responses doesn't mean you have to go through the whole process again, but it can be overwhelming.

Survivors and their families describe a multitude of ways to work thorough the grief associated with childhood cancer. Some talk with family members and friends, others share their emotions by asking for hugs or a shoulder to cry on. Some join support groups (in person or online) to talk about their feelings with others in similar circumstances. Others prefer individual, private counseling to discuss their grief and feelings of loss. Some survivors describe taking better care of themselves or doing pleasurable activities whenever they felt sad about the changes in their lives. You can also ask loved ones to help at difficult times.

Anger

In addition to the emotional reactions already discussed, many survivors and their families experience feelings of anger in the years after treatment ends. It is not unusual for survivors or family members to feel robbed of a "normal" life when they experience reminders of the costs of cancer and treatment. Adolescents just understanding the ramifications of their physical differences, for example, might feel anger that waxes and wanes over several months as they deal with questions like "Why did this happen to me?" "When will I just be a normal kid?" "What do you mean this won't ever really be over with?" Parents, too, might feel bursts of anger as they watch their children continue to struggle with late effects of treatment. One father recently disclosed, for example, that even twenty years after his daughter's successful treatment for a brain tumor, he has weeks when he is incredibly angry that the possibility of independent living has been stolen from her, and that he must continue to worry about who will provide for his child when he is no longer able to do so.

My wife got sad, but I got very angry and have stayed that way in the years since my son was diagnosed. I feel like the disease stole his childhood and stole part of my life as a parent. It took away some of his abilities and wrecked his friendships. The disease is rotten, the treatment is rotten, and I get furious just thinking about it.

It is important to keep in mind that some feelings of anger are normal, healthy grief reactions to the losses inherent to the cancer experience. You are most likely to feel bursts of anger at times when life changes or developmental demands remind you of the things you have lost to cancer. This might mean that you are angry a year after cancer, or even twenty years after cancer. These feelings might occur with other feelings, or might occur all by themselves. You might even find that your anger, or that of your child, parent, sibling, or partner, is expressed through behavior, with periods of tantrums or even angry, destructive actions.

When these angry periods come up, it is best to recognize them for what they are--normal reactions to an unusual life situation, and to express that anger as best you can to those with whom you are close. If that is not possible, if you find that you are angry all of the time, or if any angry feelings or behaviors get in the way of you doing what you want or need to do in your life, seek support from a nurse, physician, mental health counselor, or support group. Survivors and their family members have reported that once they feel supported in putting cancer and its inevitable effects in their place, they are able to deal more comfortably with the anger without letting it derail them.

I was amply informed about anger as a normal emotion I might experience, but it really didn't surface for me until about three years after the end of treatment for Hodgkin's. Then it came out fighting and grew. I was mainly angry about how many friends I began losing to cancer, especially a so-called good kind like Hodgkin's. But as time passed, I became very angry about the ways in which cancer has influenced my life choices. I can't simply take a semester or year off to travel or do whatever like many of my colleagues have--there's the insurance coverage to consider. It makes me really angry when others try to tell me how I should feel, reminding me how much others have achieved after cancer and how grateful I should be just to be alive. Give me a break!

One thing that does help with the anger is channeling it into a constructive form. For example, anger over the deaths of my friends and over my own experiences led me to write an application piece to be a delegate from my state to The March in September 1998. I was indeed chosen, and even asked to speak before our representatives' and senators' assistants. It was an incredibly emotional experience, but one of the best I've ever had. Some of the audience members began crying as I spoke. It was a wonderfully fulfilling experience that grew out of my own anger and frustration.

Anxiety and depression

Anxiety and depression can be seen as two sides of the same coin. For many survivors, anxiety is a fear related to losses that may occur in the future, while depression is sadness related to losses that occurred in the past. Both of these emotions are a normal part of anyone's life, but both can become troublesome for the survivor.

In the case of anxiety, survivors can become focused on the fear of a relapse or fear of late effects. If the anxiety grows too large, it may compromise the survivor's ability to seek appropriate healthcare. In essence, the survivor becomes afraid of knowing. Sometimes survivors become embarrassed or ashamed of their concerns about their health and body. After all, young adults aren't generally worried about things like cancer or heart problems. So normal health concerns for the survivor may make them feel strange and out of step with their peers.

Just before the eleven-year anniversary of my Hodgkin's diagnosis, I began seeing a psychologist who specializes in young adults with chronic and life-threatening illnesses. It has truly been the best decision I've ever made, and I'm glad that I was able to ignore the stigma enough to realize that there is nothing wrong with some good old-fashioned talk therapy. I have friends and family, but there are some things you just can't say to them no matter how close you are. In working with my psychologist, I've rediscovered a lot of the best parts of my pre-cancer self, worked out a lot of my stressors, and just vented my spleen (or should I say the area where my spleen would be?) about issues. It has truly helped me feel less stressed, more at peace, and--well, there's no truly good word for the feeling. I wish this was something I could have started years ago.

Some survivors worry that they are hypochondriacs--that they are overly concerned about their health. They become fearful that their doctors will see them as complainers or find their health worries crazy. This type of anxiety can interfere with getting good, thorough follow-up care. Anxiety that interferes with life in this way has become crippling and detrimental.

Depression should be distinguished from the normal sadness about the real losses that can occur from treatment. Sadness can arise from temporary losses, like the loss of hair, to permanent losses, like the loss of fertility or mobility. Depression takes over normal sadness when a person is only able to focus on the losses and can no longer take any pleasure in life. It can become crippling and prevent the survivor from seeking and getting appropriate care.

When people are profoundly depressed, they feel their life is not worth living, that they themselves may not be worthy people. All of life seems bitter, sour, and bleak. People caught up in depression often feel and think that they don't deserve care and help. They often lack the energy to participate in things that used to interest them, and they withdraw from important relationships. And so it is especially hard for them to get the help they need, both physically and emotionally. No one should have to suffer alone through depression or anxiety; both can be treated with medications and/or counseling.

There was a time after I finished treatment when my sadness and grief had clearly turned to depression. I found that life was bitter and sour, and I couldn't find joy or relief anywhere. I could identify reasons that this was so. Concerns about my health, my infertility, a marriage that had been strained beyond the saving point by my anxieties about a relapse. The reasons for the depression were everywhere I looked, and although I could identify the reasons, know what they were, I could not alter the depression.

In this case, I would say that things that I did and should feel naturally sad about had become twisted into something more than sadness, had become depression. And my internal world was bleak and dark, despite the fact that there were many fine and wonderful things in my external world.

This is when I sought out psychotherapy. I knew I was no longer able to help myself and disentangle the strands that had me caught in such a dark state. And it helped.

Survival guilt

Some survivors feel guilty that they survived when so many others did not. Sometimes they feel that life is going to be short, so they must push themselves very hard. Since they feel they don't have much time, they want to squeeze as much in as possible.

The thing that I wrestle with all the time is survivor guilt. When children I know die, I almost can't look their parents in the face. I know in my head that it's not my fault, but it never feels like enough. I feel like saying, "I'm sorry I am here and your daughter is not, I wish to God I could change it." The best that I can do is share something special that I remember. It's a poor comfort, but at least somebody remembers. There is a lot in the storyteller concept. There's a great line in Miss Rose White where she says, "If I forget, who will remember?"

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Survivor guilt is a real problem. Often I find myself caught between needing to share my concerns and feeling guilty because I'm alive, I'm doing well, so many aren't. It's a tough line to walk. I have found a great deal of comfort from reading Holocaust literature. Presently I'm reading Night, by Elie Wiesel, which is absolutely gripping. Frankly, I think there are a lot of similarities.

One of the hardest things to learn to realize is that we can't change certain things. My life did not come at the expense of anyone else's. If I could do anything to save theirs, I would do so gladly.

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Five years ago today, I gave a mini-memorial-eulogy for my best friend, who died following a second BMT at the very medical center where I now work. She was a sweet and kind and gentle and bright young woman, and her death left me with so many questions. Five years later I still can't say I have all the answers, but I have come to some peace with matters. Not the wrong kind--the kind that becomes complacent with seeing these things happen--but the kind that lets me understand that I cannot hold myself responsible for them.

Another form of guilt that survivors with many late effects sometimes feel is the effect their limitations have on those they love.

My survivor's guilt has a different cause. I feel guilty about how much my need for high maintenance affects and limits my husband's choices about work, life and health insurance, where we live, how much extra money there is for recreation, how he has to go to many things by himself, how many chores I have to leave for him because it's too heavy. The list goes on. I know he is also gaining some things, too, like gold stars and a pair of angel wings.

Some families have genetic forms of cancer that are passed from parent to child through genes. When a child develops cancer, some parents feel very guilty that their genes are the cause of their child's suffering.

I had neuroblastoma, and my daughter was born with neuroblastoma. I was angry that I passed it on to her although I knew it wasn't my fault. At one point I made a comment to my minister about it, and he looked at me and said, "You didn't ask for your genes either, did you?" I realized he was right and that was the end of that.

Post-traumatic stress

During treatment, patients are engaged in an arduous battle against their cancer. They direct all of their time, energy, and strength toward dealing with immediate survival. But when the IVs stop, the drugs aren't necessary, and the scars heal, many survivors come to realize there is also an emotional price to pay. Just as many soldiers come home from war with "shell shock," many survivors discover that being free of cancer does not mean that your emotions are cancer-free.

Some feelings may be set aside while you cope with treatment, but when treatment ends, you are left to come to grips with the experience and what it means in your life. That can be very difficult. Family, friends, and doctors may brush off your concerns, saying it's time to "get on with your life." You may think that ignoring the feelings will cause them to disappear. Unresolved emotions don't just vanish--they may grow stronger and erupt unexpectedly.

I had Hodgkin's when I was 15. I tried so hard as a freshman in college to put it behind me and get on with my life. It just didn't work. Next to treatment, that was the worse year of my life. It showed me that if I didn't deal with it consciously I was going to deal with it subconsciously. I had nightmares every night. I'd wake up feeling like I had needles in my arms. Once I started dealing with it, things improved. I had a wonderful English composition teacher that year. I really spilled out my soul to him in writing that year, and he held it gently. I've just written him a thank-you note telling him that upon rereading my journal, I came to realize how much I put into his hands that year.

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I had cancer when I was 19, and it recurred at 21. I have frequent nightmares. I sit up in my sleep screaming. My fiancé tells me about them in the morning--I usually don't remember. I also wake up if any sound reminds me of the hospital. For instance, that crinkly sound the hospital beds make when you move reminds me of getting transfusions. If I hear any crinkly sounds in the night, I wake up really scared. This Halloween I went into a haunted house and had an anxiety attack. The flashing lights disoriented me, and I felt like I was in the hospital on Ativan. I started breathing fast and my heart raced. I had to leave and go home.

According to the Diagnostic and Statistical Manual of Mental Disorders IV (1994), post-traumatic stress disorder (PTSD) may be diagnosed if the following criteria are met:

  • The person experienced one or more events that involved threatened death or physical injury, or a threat to their own or others' physical integrity. These parameters specifically include learning that one (or one's child) has a life-threatening disease.
  • The person's response included intense fear, helplessness, or horror.

In addition, people with PTSD tend to have intrusive recollections or dreams of the event, feelings that the trauma is recurring (flashbacks), and intense distress if reminders of the trauma occur. PTSD can also cause survivors or members of their families to develop memory loss or avoidance of loved ones or certain situations to try to protect themselves from being overwhelmed. Some people who suffer from PTSD are unable to have loving feelings towards others and have difficulty imagining a future that includes marriage, a family, or a normal life span.

Other symptoms of PTSD are:

  • Difficulty falling or staying asleep
  • Irritability or angry outbursts
  • Difficulty concentrating
  • Hypervigilance (feeling constantly "on alert")
  • Exaggerated startle response

Parents of survivors of childhood cancer also can have symptoms of post-traumatic stress syndrome.

About 2:00 AM, I woke up and my husband was sitting on the edge of the bed crying. I asked him if everything was okay and he said yes, so I drifted off again. A little while later he woke me up and asked me to stay awake with him. He was sweating, breathing fast, and his heart was racing. He said he had had a flashback about our son's cancer and was afraid he was losing his mind. I just held him and told him that our son was okay. In about half an hour he was calm again and we both went to sleep. The last few weeks it's been pretty obvious that he was suffering from other than ordinary stress, and we've been discussing him getting some help. My gut tells me this is urgent.

PTSD in survivors and their parents has not been exhaustively studied. One study showed higher levels of anxiety in mothers of younger survivors than in school-aged and adolescent survivors themselves. However, a recent study of 78 young adult survivors showed approximately 20 percent had PTSD, higher than the numbers of mothers of young survivors in the earlier study. In addition, among all groups studied to date, survivors and parents tended to have at least some of these distressing symptoms of post-traumatic stress, even if they did not have enough to warrant a full diagnosis of PTSD.

A year or so after treatment, I was watching one of those St. Jude's specials (I avoid them now). When one of the children's IV pumps beeped, all the blood left my head, I got terribly dizzy, and I almost passed out. What a visceral reaction! And I thought I had adjusted well.

Susan Nessim, in her book Cancervive, describes her strong emotions years after her treatment for rhabdomyosarcoma:

Although I am more than fifteen years past treatment, I still can't enter a hospital without experiencing strong physical reaction to my memories of cancer treatment. Whenever I enter an oncology clinic, I break into a cold sweat and my heart starts racing. The sight of alcohol pads and the sight of butterfly IVs never fail to make me nauseous.

One of the ways I faced up to my own delayed stress reactions was by keeping a journal. The process of writing helped me crystallize my thoughts and size up my emotions. Counseling helped, too; through it I was able to take care of a lot of unfinished business.

As for my aversion to oncology clinics, I knew that was going to be a tougher nut to crack. I found it helps to have a friend or family member accompany me to appointments. I feel reassured by having someone along I can talk to when I feel anxious, or whose hand I can squeeze when I'm especially edgy. Also, I've learned how to "condition" myself by repeating in my mind during my appointments that I'm there only as a visitor, not as a patient.


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