If you’re a parent with cancer, what do you tell your children? Cancer survivors share their stories.
When You’re the Parent
By Dr. Julie K. Silver, MD
Breast cancer survivor Julie K. Silver, MD, celebrated five years of survivorship by publishing What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope (October 2008), a new book that she created for the American Cancer Society. An award-winning author of more than a dozen books, including After Cancer Treatment: Heal Faster, Better, Stronger (Johns Hopkins University Press, 2006), Dr. Silver received the American Cancer Society’s prestigious Lane Adams Quality of Life Award in 2006 for her dedication to making survivorship a distinct phase of cancer care. She is an assistant professor at Harvard Medical School in the Department of Physical Medicine and Rehabilitation and is on the medical staff at Dana-Farber Cancer Institute in Boston, Massachusetts.
As a mother of three, Dr. Silver also knows something about what it means to manage a cancer diagnosis and parenthood simultaneously. Together with some of the contributors from her recent book, she shares some tips for making it through the challenges that survivors face.
When I was diagnosed with breast cancer in 2003, I had three young children at home—one of whom was still in diapers. I had concerns about whether I would be able to be there for them during my treatment and how they would cope with the changes I would be going through.
There were certainly times during my journey when I felt overwhelmed. Once, in the middle of the night following a chemo session earlier that day, I found myself sitting on the floor of an emergency room with my daughter. My husband was home with our two other children, and I was waiting for a doctor to be able to see my daughter. The chair I had been sitting on was covered with my daughter’s vomit, and I was too weak to stand. Those were not easy times to fill my role as a parent.
But on other occasions, life seemed to go on almost normally—until I would remember my diagnosis. Watching my two daughters play with dolls one day during my own treatment—they were both acting out the role of “Mommy”—I suddenly thought: This is why I need to fight this disease—so my babies have a mommy. Though there is no doubt that taking care of children during cancer treatment makes the process more difficult, it also provides a great deal of joy and inspiration.
Coping as a Family
Although there may be only one person who is physically ill when a parent is diagnosed with cancer, the entire family is caught in the crossfire. Each family copes with the situation differently, but we can learn a lot by listening to the experiences of our fellow survivors.
Many times our children want to battle for us. Bernadette, a breast cancer survivor, describes the way her son took on the fight: “My son [then 10 years old] was running back and forth while I was sleeping, putting his soldiers around me and on me. He had put on his cape and mask, saying, ‘I am going to fight the cancer so my mommy won’t get sick anymore!’” Each child will “fight” and cope with the situation in his or her own way, and as parents our challenge is to recognize how to support each of their different efforts.
Beth, who was given a terrible prognosis after a liver cancer diagnosis in 1990, explains that she and her husband were honest with their then seven-year-old daughter. Though difficult, the family’s decision to be open, Beth says, instilled a deep sense of empathy in their daughter that has remained to this day: “Today she is a very compassionate young woman, with a heart for cancer patients.” Now a middle-school teacher, Beth’s daughter has a student undergoing cancer treatment, and she tells Beth that she is better able to help this child because of what she and her family went through so many years before. Though I know that when my own children are grown our family’s cancer experience will have left an indelible mark, I was heartened to learn of the ultimately positive outcome for this family.
We can’t help but have our personalities shine through in good times and in bad. When I was going through chemotherapy, I didn’t like my wig and rarely wore it. Instead I wore a baseball cap when I went out of the house. Joyce, a legal secretary who received a breast cancer diagnosis in 2006, had a different approach. She wanted to keep things “as normal as possible” for her family, so she never let her children see her bald head. As survivors, we will need to recognize how to honor our own needs for comfort and those of our family.
There’s No “Right” Way
The fact is, there is no “easy” or “right” way to nurture children when a parent has a cancer diagnosis, but consistent honesty (age-appropriate information, of course) and love go a long way toward helping children become empathic and resilient adults. And sometimes, no matter how hard you try, you will still be faced with challenging days and tough moments.
Nicki, who was diagnosed with thyroid cancer when her oldest child was only six months old and then had a recurrence after she had two children, summed up parenting with cancer in this way: “I thought I had done everything possible to make it easy on my children, but it was still very, very hard.”
Ultimately, there are many ways to be a good mother, and though it is a challenge to nurture your children when you are ill, it is perhaps most important to keep in mind that they need love and attention just as much as ever and perhaps even more so during this time. Good mothers each have their own style and beliefs, so find your own path and nurture your family in a way that works for you.
The Big Picture
I never wanted my children to have to participate in my cancer diagnosis, but I couldn’t shield them from the reality of our connected lives. Though I don’t consider any serious illness a “gift,” I do think there are things that people can learn from facing life’s challenges. I hope that my children learned that while terrible things happen to people, our ability to be resilient is remarkable and wonderful. I cried many tears during and after my cancer treatment, but I also laughed and showed my kids what it means to be resilient when adversity strikes.
Five Things to Tell Your Children About Your Cancer
- It’s not your fault. Cancer is never anyone’s fault, even if there are risk factors that could have been avoided. Blaming oneself is never helpful, and it’s important to tell children that cancer is a group of diseases that some people get for reasons that are not entirely clear.
- It’s not their fault. Children believe that they have enormous power and influence—superpowers. They may mistakenly believe that they somehow had the ability to cause your cancer. Reassure them that it’s not their fault.
- People can’t catch cancer from other people. Explain that cancer is not like a cold that can be transmitted from person to person. Most kids are not old enough to understand explanations about genetics. Keep it simple and explain that you can’t catch cancer.
- Your doctors are smart and are working hard to help you. No matter what type of cancer you have, or what stage, the message should always be that you are getting the best help possible. If you aren’t getting the kind of help you need, work toward that goal. Your message should be honest, of course.
- You are still the same mom or dad who loves them—cancer doesn’t define you. Put cancer in its place. Don’t let your kids believe that a disease defines their parent.
From What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope (American Cancer Society, 2008). Reprinted with permission.
Parenting Through Cancer
By Cathy Forsythe
Having cancer and having children are often at odds with each other, especially if you are determined (as I am) to do both well. Raising children “well” is something most of us aspire to. Bringing up educated, compassionate, and functional human beings is our gift to the next generation; and, indeed, there is no better goal in life than to try to shape our kids into people of whom we can be proud. Doing it is another matter. If it were an easy task, the endless supply of “how-to” books, talk shows, and licensed practitioners devoted to the topic would disappear, and parents would be forever smiling and relaxed.
There is, however, one recurrent theme in all that research: to parent well, you must be there for your kids. To be there means different things to different people, but to me it means spending time—both quality andquantity—with my kids. It means knowing about their lives, their friends, and their fast-food choices and being involved in their schools and their sports. It also means giving them endless opportunities to make their own choices.
In short, parenting well is a daunting task for anyone who takes on the challenge. But when you have cancer, what is daunting to some at times becomes the equivalent of climbing Mount Everest in a windbreaker—impossible.
I was diagnosed with colon cancer in 2002 after a routine exam. I was, and had always been, the very picture of health. I had no symptoms, and yet suddenly I had Stage IV cancer. Life was put on hold as I began chemotherapy and radiation treatments, which were followed by two surgeries. Finally, I was declared cancer-free, and I set to work putting everything cancer-related out of the picture as I refocused on my kids, my work, and my life.
But six months later, it was back: metastatic cancer to my lungs and liver. Life (and my kids) went back on hold as chemotherapy resumed. And then, the worst: unblinking, clinical eyes looked into mine and reluctantly told me to get my affairs in order. My first thought was How do I tell the kids? As if they didn’t know . . .
From that point forward, I kept waging an internal war in my head as I tried to live life spontaneously and at the same time felt forced to make major life decisions that would affect my kids right now. Every experience was saturated with the pressure of my diagnosis.
At one point, positively green from chemotherapy, I trudged across two campuses in different states with my son, Chris, as he toured colleges during his senior year. Pretending to be enthusiastic about fraternities, class rankings, and academic programs, my whole body shrieked with the stark unfairness of it all. I wanted so badly to make an impression on my son, to communicate all my college experiences to him in one visit, so that I would be connected for him in some way to a place I might never see again. I wanted his college years to include me. I desperately wanted some closure on where he would be spending the next four years of his life, to have some input, but I felt such pressure because we thought we didn’t have the luxury of time. I saw my children’s lives as a timeline, and I wanted to be included for as long as I could.
Eventually, we got through it by talking it out. It sounds so simple, but I had to learn that starting any conversation with the words “When I’m not around . . .” turns living rooms into war zones. I have also learned that kids can take only so much preparation before their emotions shut down out of sheer self-preservation; and the stuff I’ve missed telling them . . . well, I’ve just had to let it go. All parents have an internal parenting checklist of all the things they want to share with their kids and all the things they hope to do someday. My checklist has been brutally edited. I just have to believe that it all works out in the end.
Okay, stop the story. My cancer took an unexpected positive turn: I’m still around. I outlasted that 10-month prognosis, and I’ve spent the past four years on various angiogenesis drugs and chemotherapies. I’ve also been undergoing an amazing, cutting-edge treatment called radiofrequency ablation to my lungs and liver. (Many treatment centers offer radiofrequency ablation, but only a few do it in the lungs.) My life continues and, most important, so does my role as a parent.
I chose the title of this article—“Parenting Through Cancer”—with care because, although it took me awhile to understand it, cancer has no end point. Even when you beat it, there is always the chance that it will return. So you can’t just be a parent before and after your cancer, like I originally tried to be. You have to parent through it; otherwise you may not have much time to be a parent at all.
Although everyone’s situation is different, it worked out for me to integrate cancer into my life . . . our lives. I may not be able to “be there” physically as much as I was before, but we connect just as much. Instead of cheering on the sidelines, I may watch from the car or view the whole thing on videotape. I take much more time getting to know my children’s friends, which makes them more comfortable about coming over.
My kids and I talk matter-of-factly about my cancer. It is frustrating, it is at times sad, but mostly it just is. We have adjusted. Our refrigerator door has the requisite calendar on it, but mine is color-coded to show my treatment days, and my kids now understand that I may be out of commission during those times. I no longer think about doing something special with my kids “someday.” We have taken trips to Hawaii and Key West and the Bahamas. I take lots of pictures of us together and take every opportunity to talk about my background, about experiences we have shared (especially the ones they can’t remember because they were too young), and about how much I love them.
There’s also the more pragmatic side of parenting through cancer. My kids have been trained on several medical procedures, have power of attorney, and understand my legal will and what advanced directives are. They know how to run a household and which bills are paid by which bank account, and they have strong connections with the rest of my family. Most important, they know how to make the family’s spaghetti sauce from scratch, as my great-great-grandmother did when she lived in Sicily.
I have been blessed with the ability to look at cancer as just another disease albeit a nasty one. I have chosen to manage my cancer, much like diabetes or multiple sclerosis or a really hateful boss who gives you all the horrible duties when you feel the worst. I know that cancer has caused me to miss some milestones in my family’s life, but we refuse to lose anymore. Having a parent with cancer has made my children compassionate individuals who understand that life is about flexibility, compromise, and finding what joy you can in everything. How could I ask for more than that?
Cathy Forsythe has worked in the in the Houston, Texas, broadcasting industry for over 20 years. Now she looks for ways to combine her communication skills with her status as a cancer patient and advocate. She currently serves as a designated speaker for the 2006 National Cancer Survivor Day Foundation and writes features for cancerlynx.com. She received the 2006 Communicator Award for producing a patient informational video on radiofrequency ablation. She lives in Houston and has two children who attend the University of Texas at Austin.
Family Was the Focus
When Ginny Smith was diagnosed with breast cancer, keeping her sights on her two daughters and the joy of family life helped her make decisions about treatment and offered respite from Cancerland.
By Ginny Smith
Friday, May 18, 2007, was my younger daughter Chloe’s ninth birthday party. A dozen nine-year-olds were due to arrive at my house at 5:30 p.m. for dinner and an evening at the ceramic studio in town. In addition to putting in a full day at my invitation and stationery business and trying to gather the party supplies, I had also received a call that day from the imaging center, asking me to return for closer inspection of a recent mammogram.
So at 4:00 p.m. that day I found myself alone and in tears, leaving the imaging center, mammography films in hand, with the radiologist’s suggestion to “go see a surgeon” ringing in my ears. I remember the subsequent walk through the supermarket to gather the goods for Chloe’s birthday dinner as if I were walking through water in slow motion, holding my breath.
The Perfect Distraction
But from that first night it was clear that my family—and my daughters in particular—would provide the most blessed relief from the anxiety and the challenge of this journey. The party was a wonderful distraction. Seeing my daughter delight in her friends on her birthday was magical. I was grateful to have some place to go besides under the covers, which was not an option. Without being aware of it, this initial experience set a pattern: distracting myself from cancer became a coping mechanism for me. And throughout my experience, the best distraction was always time spent with my family—my two daughters, Chloe and Talia, and my husband, Keith—whose presence continually reminded me what I was fighting for.
When I had medical appointments in New York City, we would look at it as an opportunity to have a great meal, see a funny show, or take a trip through a museum. Sometimes we booked a hotel and made a minivacation out of it. We always tried to keep our senses of humor intact. In fact it was during this period that Chloe developed a fierce addiction to old I Love Lucy episodes.
Family Charts the Course and Speeds the Healing
Still, there were plenty of challenges along the way. I am no stranger to breast cancer. My sister Jessie was diagnosed at age 31 and again at age 53, and I was aware—at least from the outside—of what a crazy ride I might be facing. And my journey definitely provided its share of surprises and obstacles.
When I was initially diagnosed with Stage I breast cancer, we decided on a lumpectomy until subsequent pathology revealed the unusual occurrence of two types of cancer (interductal invasive and lobular) within the same breast, which put me at higher risk of recurrence. My surgeon recommended a double mastectomy and chemotherapy. Because this seemed an aggressive treatment plan for Stage I cancer, I consulted other doctors and discovered that there was some debate over how someone with my diagnosis should be treated. By showing up for that debate and learning to ask the right questions, I ultimately decided to go through with the double mastectomy and chemotherapy. An Oncotype DX® test had revealed that chemotherapy would add a percentage point or two to the chance that I would not suffer a recurrence. As I revealed to friends and family in an e-mail during that time: “There are a few factors that tip the scale for me to proceed with the chemo—their names are Keith, Talia, and Chloe.”
My daughter Talia insisted on coming to the hospital the day of my mastectomy. She wanted to be there to keep my husband company during the surgery, and I couldn’t argue with that. Because my surgery was scheduled four days before Christmas, we gathered holiday decorations from our home to take to my hospital room. Talia’s presence when I woke up from surgery was comforting. Seeing her face made me smile, which in turn made her smile. From there the healing continued. I was home from the hospital for Christmas, albeit a bit fragile and sporting four drains that more than once I referred to as my jingle bells.
More Important Things to Think About
It was about the midpoint of my chemotherapy when Talia was diagnosed with a spinal deformity called kyphosis. It is not life threatening, but it could cause multiple problems if not corrected. Her doctors were in New York as well. Some days I would temporarily forget which doctor we were seeing and for whom we were going, but we would not forget the meal we ate or the fun we had before or after an appointment.
The night before Talia’s spinal fusion surgery, we went out for dinner and a Broadway show—Monty Python’s Spamalot. I figured we could all use a glimpse into “the bright side of life.” It worked. We were so tired by the time the show was over, it was lights out. Talia made it through her 10-hour surgery and eight-week recuperation like a champ.
And I’ve made it through, too. By keeping my focus on the people and the experiences that fill my life with love and joy—and with a lot of support from family and friends—I have been able to see beyond the present challenges that breast cancer has handed me toward the full, happy life that I have in store.