Read an Excerpt
To Parents: We Who Stumble and Bumble
Our Way Through Things While Trying to Make It
Look to Our Kids Like
We Have a Plan
'You have cancer.'
Twice in a little more than two years, I heard those three wordsthree words for which no one can ever prepare you. Once they are spoken to you or a loved one, nothing is ever the same again.
My grandmother used to say that every story has two beginningsthe one you choose to remember and the real one. You could never lie to her, because she would grill you until she discovered that real beginning.
My cancer story has two beginnings, too: the one I like to remember where I am the tough, hard-charging, I-will-beat-this-thing kind of guy, and the real one where I am not very tough at all. The second is less comfortable to tell, but the one on which my grandmother would have insisted.
When my assistant interrupted a conference in my office to tell me that my doctor wanted to speak to me, I asked the people with whom I was meeting to excuse me for a moment. I picked up the telephone.
I didn't know Dr. Solomon well, but I had been impressed with his quiet professionalism and easy smile when my regular physician, Dr. Goodman, first sent me to him. A no-nonsense straight-talker, he apologized for interrupting my meeting and went directly to the point.
'The results of the precautionary tests I ordered last week have just been faxed to me,' he said. Then he paused. I had seen enough medical shows to know that nothing good comes after a pause, and I was right. 'You have cancer,' he said evenly. And there was more. The tests were imprecise with respect to the cancer's exact location, and knowing whether or not it had metastasizedmigrated elsewherewas impossible. In addition, the cancer had graded out 'hot,' meaning that I had an aggressive form of the disease.
I was married to Sandi, the girl I used to tease in high school, and we had two healthy young sons, Andrew, thirteen, and Trevor, eleven. I had my dream job as president of a television and motion picture production company and was lucky enough to be able to work with some of Hollywood's best talent. I was also fit, ran twenty-five miles a week, ate properly and didn't smoke. Until that moment, my biggest problem was that the Little League team I was coaching had both the highest batting average and the worst win/loss record in our divisionan anomaly several parents had begun to attribute to management. Otherwise, I was having a pretty good life.
I didn't tell anyone about my diagnosis right away. I am by nature a deliberate person, and I wanted to be sure that I understood as many of the ramifications of the disease and the potential courses of action before I began trying to explain anything to anyone else. I also needed to complete a series of more sophisticated medical tests, and I wanted to do that without alarming anyone in my family.
During that first week, I did what we are all taught to doI vacuumed up every available scrap of information about cancer from my doctor, the library and the Internet. I also spoke to physicians and researchers at Johns Hopkins, Memorial Sloan-Kettering and the Mayo Clinic for information on the latest techniques in treating my particular form of cancer. It's amazing who you can get on the telephone and what you can convince them to tell you when you are really motivated. (It also didn't hurt that I produced movies for a living.)
Finally, with at least a working knowledge of the disease and the options available to me, I put my sons to bed, poured a couple of glasses of red wine and broke the news to my wife.
All things considered, she took it pretty well. She had some questions, of course, but fewer than I had expected. And so, wine glasses raised, we began a new phase of our marriage: the cancer phase.
Looking back, it now seems unfathomable that I could have gone so far without once considering how I was going to tell Andrew and Trevor that I was sick. I had been so focused on satisfying my own thirst for knowledge that it truly never crossed my mind that they were also involved.
Now, I was guilty of giving my sons the same short shrift that adults routinely give children when life-altering events occur. After all, they're 'just kids,' aren't they? How could they understand something as complex and terrifying as losing your job . . . or going to war . . . or cancer?
But kids are family members, too, the ones who don't have years of accumulated wisdom and experience to fall back on in a crisis, and the ones who never seem to have a vote on important issues. As I sat there drinking wine with my wife, I began to realize that telling my sons about cancer was, perhaps, the most important responsibility I had yet faced as a parent. Moreover, the way I handled it would be something they and I would remember for the rest of our lives. Added to that thought was the terrifying realization that I didn't have a clue where to start.
So I went back into research mode: back to the library, back to the doctors and back to the Internet. A week earlier I had been able to access reams of data about cancer treatments so cutting-edge that news of them had not yet reached my physicians, but this time I came up mostly empty.
I did find some older books that talked peripherally about kids and cancer as well as a considerable body of work on grief counseling. But when it came to a simple, straightforward book about the state of cancer at the dawn of the twenty-first century that my sons and I could sit down and read together, the literature was not just thin, it was nonexistent.
So, for lack of a better way to approach the problem, I went to my word processor and tried to think like a kid. It wasn't scientific, but based on my observations as a father and baseball coach, I knew that kids can usually comprehend just about anything, if you give it to them straight and in terms that they understand.
From experience I also knew that, when talking to kids, the deadliest phrase in the English language is, 'Anybody got any questions?' Almost nobody thinks in terms of what he or she doesn't know, especially a child. Conversely, I had discovered that if I asked my baseball team a simple, direct question like, 'What's our bunt sign?' I might get thirteen different answers, but I would immediately know who needed help.
With these rather basic precepts in mind, I typed out a series of questions about cancer, the same questions I had wanted answered when I first learned that I had the disease. Then I went back and answered each questionsimplyusing language a child might use to explain the rules of a game to a new playmate.
A few days later, brimming with information, I closed the family room door, opened three Cokes and tried not to appear too nervous. But looking into my sons' young faces, my palms turned sweaty and my mouth went dry. Was I about to give them too much information? Not enough? Were my explanations going to be too technical? Or perhaps condescending? Should I even be doing this? Pushing back the doubt, I swallowed hard and began.
To my surprise, after a rocky first few moments, things started to come together. A few tears came, and for a brief moment I longed to be aboard the Orient Express bound for Istanbul, but then things leveled off.
When I finished, a long pause ensued before anybody said anything. Then Trevor, my youngest son, looked into my eyes with more intensity than I could have imagined he possessed and asked a question I could never have anticipated, 'Daddy, can I still kiss you?'
It was so simple, yet so profound and so moving that it was a long moment before I could answer him. When I finally answered, 'Yes, you can,' it was like a relief valve had been opened for all of us, and for the next hour we engaged in one of the most intelligent, most touching discussions we had ever had. None of us will ever forget it.
A little over two years later, when my cancer returned, my sons and I sat down with a new series of questions, but this time things were different. By now, I had met dozens of parents who had had to tell their sons and daughters about cancer, and Andrew and Trevor had found that many of their school friends had dealt with the same fears that they had. My sons were older now as well, and their questions were much more insightful and profound. This time we talked a lot longer than an hour, not just about the pain that cancer brings to a family, but about the strength that can come from the experience as well.
I wish I had never had cancer. No one deserves this horrible disease. You can't really explain to anyone but another cancer patient how it changes you, and the fear it leaves in the pit of your stomach never truly goes away. I can honestly say, however, that as close as my sons and I had been before, cancer brought us closer, and for that I owe it a debt.
Having compiled all of this kid intelligence, just throwing it in a drawer seemed such a waste. So, in the hope that it might help someone else, I wrote down what Andrew, Trevor and I had learned. Then I gave everything to Neil Barth, M.D., a highly respected oncologist, and Dr. Margaret Reedy, a clinical psychologist friend who works with families in crisis. I asked each of them to review and correct what I had written. Remarkably, they made very few changes, and the result is the book you are holding.
The chapter divisions are self-explanatory. As you begin each new chapter, I would encourage you to review with your child the material that you have already covered. Children find comfort in going over information that they already know, and after they have lived with cancer for a while, some of their earlier questions will become much more personal.
In closing, I would like to make four comments:
First, as I have previously said, this book is not a medical text but instead presents questions and answers with which to begin a conversation about cancer with your child. By design the presentation is simple and general. Only a medical practitioner can provide specific information about any disease, and one should look to those dedicated men and women for detailed answers about cancer.
Second, remember that kids are smart, and though they might sometimes pose questions that are difficult or uncomfortable to answer, the truth is always preferable to a diversion. By the same token, younger children need less detailed, simpler explanations while older ones can understand and process more complex information. Also, check back with your kids from time to time, both to let them know that you have not forgotten them as well as for periodic updates on topics or aspects of your disease that might be bothering them.
Third, cancer is intensely personal, and no one, not even someone suffering from it, can adequately describe its effect on another. Similarly, no two individuals respond to the same type of cancer in exactly the same way. So some of the following material may not apply to another person's experience with the disease. In an effort to accommodate those differences, I have intentionally left blanks in some of the answers for moms and dads to discuss their specific experiences.
Last, please tell your kids that sometimes even well-meaning people make insensitive remarksstatements that might not be accurate or that are based on rumor or speculation. Cancer is a big event that will start a gossip's tongue wagging faster than a local sighting of the Publishers Clearing House Prize Patrol. Whatever your kids hear outside the home, they should either ignore it or bring it to you so that you can set them straight.
I apologize in advance to anyone who feels that this book goes either too far or not far enough. The effort is truly my best.
©2008. Neil Russell. All rights reserved. Reprinted from Can I Still Kiss You?. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the written permission of the publisher. Publisher: Health Communications, Inc., 3201 SW 15th Street, Deerfield Beach, FL 33442