Return to Normal

After years of treatment, families grapple with the idea of returning to normal. Unfortunately, most families don't really know what "normal" is any longer. Parents and children realize that returning to the innocent pre-cancer days is unrealistic, that life has changed. The constant interaction with medical personnel is ending, and a new phase is beginning in which routines do not revolve around being sick, taking medicines, and going to the hospital. While it is true that the blissful ignorance of the days prior to cancer are gone forever, a different life, a new, normal one—often enriched by friends and experiences from the cancer years—begins.

I try hard to believe in the "happily ever after." But I also try very hard to keep at least one foot firmly planted in reality. That way if that 2 x 4 ever takes another swing at me, I have a fairly good chance of being able to duck. That 2 x 4 packs quite a wallop!

Parents and survivors need to talk to one another, examine their emotions, decide what course they want to chart, and work together toward a healthy life after cancer, recognizing that the journey will have twists and turns and ups and down.

Many of us get pressure from family/friends/institutions to just "move on" or to "get over it." From my perspective as a cancer mom 6 years past my child's bone marrow transplant, I can tell you that moving on is relative.

We have definitely moved on from the day-to-day struggle of current treatment. We don't have to juggle a normal family life around treatments and treatment side effects. Our stress level is definitely less than a family on current treatment. Six years out, we also rarely worry about relapse. That day-to-day fear is gone. Of course the relapse monster raises its ugly head when there are fevers or unexplained tiredness, but these are few and far between.

We do deal with our daughter's treatment-induced learning disabilities. But even these are mundane and such a part of our lives to be considered normal (at least normal for us).

From the outside, it would seem that we should move on. However, nearly losing my child 6 years ago has changed me forever. This illness nearly ruined us financially, nearly ruined our marriage, had lasting effects on the psyches of our healthy children, and shook the very core of my spiritual and emotional self. I will never be the same. I will never be the innocent I was before. I now know that no matter how good, how bad, how smart, how stupid one is, your child can die. Because of that, I can't totally move on to the "normal" world. These feelings aren't with me every moment of every day, but they pop up enough to know I view life differently.

Since this experience is a journey, I will feel differently in a year and five years from now. I only know where I am right now.

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I realize that, in many ways, we have been lucky regarding our battle with cancer. Tim is still here (that is the big one). And his effects have been much less than many kids I know of. Still, if we were really lucky, we would never have had to be in this battle at all. And I am all too aware that we are far from out of the woods. We keep reshaping our dream of what our child's life can be, grieving as we have to let go of the dream that was, and fearing for what reshapings may need to come.

—

Joseph turned 8 a month ago and as of this morning is officially a third grader! He's quite a contrast to the kid who felt lucky to be in kindergarten 50 percent of the time, bald and skinny and barely able to climb the stairs to get to his classroom. He's dealing with some residual effects of those huge vincristine doses, but his newly restarted occupational therapy is helping a lot, and I only wish we'd done more in the past 2 years since he's been off treatment. The radiation to his right eye has caused a massive cataract, which has left him able to use only his left eye, but we're going to schedule cataract surgery in a few months and take care of that as well.

We have moved into a version of normal that certainly isn't the same as before, but it's a lovely place to be. It's sweeter, if shakier, and has a much better perspective on what's important and what the heck isn't. We're all more accepting and more relaxed. In the new normal, if it ain't bad news, then it's just fine with us. I ditched years of work and a PhD dissertation to spend a year in the hospital with my kid and another year recovering, and I've kept expecting to feel slighted, but it just hasn't happened.

As survivors grow and mature, their understanding of what happened to them when they had cancer unfolds and expands. The past is viewed from the perspective of an older individual with a broader worldview, more education, and firmer values. They ask more questions of parents and medical personnel to more fully understand the past and its implications for the future. They will struggle to cope with, or make their peace with, any late effects from treatment that arise. And they do this on top of all the usual developmental challenges of growing up.

In a perverse way, this is the goal—to get to the long-term effects. As I met more cancer families, I found that the "cure" for this beast is a series of trade-offs. All of us carry battle scars. Only a lucky few get to the promised "cure," the normal life of before.

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It's so hard to tell what life experiences are related to cancer and what aren't. It's really hard to tell if a difficulty has anything to do with my cancer history or if it's something that everybody is going through. And does that distinction even matter? I'm trying to decide now whether to drift away from my many cancer-related activities. Should I stop going to the support group? Should I spend more time with my non-cancer friends? Have I gotten everything that they can give me? And have I given enough back? I've become almost like a mentor to the other survivors. I've become a big support to many of them and at times it's stressful.

—

Elizabeth was 3 when diagnosed. In the beginning I don't think she realized she was different. Sort of like losing a tooth: it happens to everyone eventually, but somebody has to be first. During that short period of time her innocence was intact. Then the reality hit that it wasn't going to happen to everyone, she could die. Then Chelsea did die, Sam lost her arm, Sammie died. Her innocence is now gone.

In many ways she is different from the other kids. I remember when I was young, death was this vague thing that just didn't seem real, it only happened to old folks. Elizabeth doesn't have that view. Some things in life she takes very seriously. Safety issues, smoking, eating healthy, recycling, etc., are all things that she can be quite vehement about. That is what makes her different. Her cancer experience has given her a maturity that she would not have had otherwise. And there are times when I am sad for what she has lost. But in so many more ways I'm so proud of the person she is turning into. She will be much stronger, more outspoken, more aware than I ever was.

All of that said, Elizabeth is also still very much a child. She still thinks the word "fart" is the funniest thing she has ever heard. Boys either have cooties or are her latest flame. Sleepovers are for giggling until midnight. Everything in the world should be either purple or pink. She loves to run through the woods, swing as high as the swing set will go, do flips on the monkey bars, swim until the skin threatens to peel off, and cuddle and tickle with her mom. Her world is still filled with laughter, ponytails, popsicles, and hugs. She is very much a child enjoying her childhood.