AS I’M WRITING THIS CHAPTER, it’s been more than six years since I first found the lump in my right breast. I’ve passed the fabled five-year survivor mark, and “graduated” to the survivorship program at Sloan-Kettering—fewer follow-up visits, and only with the nurse practitioner instead of the oncologist unless something seems hinky.
Cancer’s on my mind a lot now because I’m writing this book, but most of the time I can go for days or weeks without even thinking about having had cancer. It’s just a chunk of my biography—I grew up in Nebraska, I love Ethiopian food and figure skating, I drive a minivan, my favorite writer is Robertson Davies, and I had breast cancer.
But then … the land mines come along and trip me up, reminding me that I’m not like all the other moms. Like when I recently started calling insurance companies, figuring that as a five-year survivor I might be able to get life insurance again. When I was diagnosed, I wasn’t a mom. No one was depending on me for the things they needed to live. Life insurance wasn’t even on my radar screen. Now, with three kids, and with my income accounting for about half of our family’s support, life insurance has suddenly gotten a lot more important.
But when I started making calls, I found out that my cancer seems a lot more immediate to the insurance companies than it does to me. Five years and the words pathological complete response doesn’t mean much to them. If I want to get life insurance that doesn’t cost a giant chunk of our monthly budget, I have to be at least seven years out from treatment. One company wouldn’t even talk to me until I was ten years out.
That’ll bring you up short. Yeah, life insurance companies are just trying to minimize their risk, so it makes sense—but it’s still a stark reminder that you’re not like everybody else. Despite how good you feel, the people who do the math say you might not be here next year.
That’s a hard reality for any cancer survivor to face. But when you’re a cancer survivor with young children—or trying to have young children—it’s not just you, your husband, or your grown kids that you’re scared for. It’s that baby or that two-year-old or that five-year-old, who still needs you for everything. Or who will, even if he or she isn’t here yet.
How do you deal with that burden? There’s the not-so-abstract ethical question of “Is it right to bring a child into my world and promise to take care of them, when I’m not entirely sure I’ll be here for their first day of kindergarten?” And then, once you’ve grappled with that, there are also the questions about how much, when, and if you talk to your kids about having had cancer in the first place.
For Jilda Nettleton, the fears of what might happen if the cancer comes back aren’t abstract at all; hers already has. Her daughters, Aileen and Reanne, were three and nine months when Jilda’s DCIS (ductal carcinoma in situ—limited to the ducts and not yet spread to the rest of the breast tissue) breast cancer recurred in 2008. She knows that the recurrence might well have happened because she chose to wait a year and a half after treatment to go on Tamoxifen so that she could get pregnant and give birth to Aileen and then went back off Tamoxifen after a year to have Reanne.
“I know that with DCIS the prognosis is so much better,” Jilda says. “But you still think, am I going to be the person who goes from DCIS to stage IV? I know people [to] whom that’s happened.… I don’t think about it every day, but there are times when it’s there in the back of my head. What if something else happens, and I do get very unlucky and I don’t get to see my kids grow up? In my support group, one woman died who had kids the same age as mine, and it was so hard to see that and think of that. But I have to just make the most of every day and be sure that I’m doing the best that I can to take care of myself.”
Jilda says she’s very open with her daughters about medical issues—even at their young ages. “I still have to go to a lot of doctor’s appointments and I don’t try to hide anything. My kids know the word cancer,” she says. “My four-year-old asks a lot of questions, and I do my best to answer honestly. They are familiar with the fact that bad things happen—I don’t try to shield them from that.”
I take the same approach Jilda does. One night, my then four-year-old daughter looked at me in the bathtub and asked why “That one looks different from that one,” pointing at my breasts. I explained that before she was born, Mommy had a sickness called cancer, and it made a lump that the doctors had to take out to make me well. They made a cut in my breast and took it out, and then sewed me up and also gave me medicine to make me better. We talked a lot about where the scar was and if it hurt. She never asked if I was sick enough to die … but I know that question will come up. And I’ll have to tell her at least some of the truth (because if I lie to her, how will she ever trust me when she finds out?). “Sometimes people do die of cancer, but Mommy had very good doctors and they don’t think my cancer is ever going to come back.” Will that be enough to reassure her? I don’t know. After all, it doesn’t always totally reassure me.
Terri Turner, who both adopted and had a biological child after cancer, is particularly aware of her responsibility to the daughter she adopted. “There’s a grave responsibility to adopting a child,” she says. “The angst for me has been thinking about helping her deal with such a loss from her birth, and on top of that also worrying that I might die early—that she might lose two mothers. That’s the fear that I have a problem with avoiding or hiding from. I just get apoplectic and panic every so often, like every time there’s a cancer scare, and I’ve had a few since we brought her home.”
Facing the prospect of parenting with cancer is an increasingly common scenario, according to Paula Rauch, MD, a child psychiatrist who directs the Parenting at a Challenging Time (PACT) program at Massachusetts General Hospital. “A pretty high percentage of the people still in treatment for cancer have children at home,” she says. “And because the statistics on childhood cancer survivorship are so good, there’s now a whole new population of grown-ups who survived pediatric cancer and are becoming parents. They’re not in treatment, we don’t see them at the clinic, but they’re out there.”1
Choosing to become a parent is always, in some way, a leap of faith. When you have a cancer history and fear what that might mean for your children, it’s even more of a leap—and one that’s not subject to logical analysis, Rauch says. “This is such a profound issue; it’s not something for which you can get out a risks and benefits sheet and list the pros and cons. Like most difficult emotional things, people have a gut sense of what they want to do. In the sixteen years I’ve worked in our clinic, I’ve never met a parent who said they were undecided about having children.” That said, if you’re having trouble deciding whether having children is right for you, it can help you to talk to other people who’ve also faced the same dilemma. The message boards run by the Young Survival Coalition are a great place to connect with other survivors who’ve had kids or are thinking about it (there are boards for fertility, pregnancy, and parenting), as is the adoption-after-cancer Yahoo! Mailing list. For more on both, see Resources.
Rauch reminds all the parents she works with that nobody knows what their future holds. “In the course of working with patients who have a poor prognosis, it hasn’t been uncommon that they’ve had any number of people in their circle of family and friends die unexpectedly,” she says. “We all live with risk. Some of us are just more acutely aware of it than others.”
As cancer survivors, we can take advantage of that awareness—no matter how painful it might be—to build stronger connections with our children, just as Jilda Nettleton describes. Here are some of Rauch’s tips:
These kinds of coping techniques and support systems will strengthen your child no matter what—whether or not you experience a recurrence of your cancer. But in the event they do lose you, remember that the power of your love isn’t measured in years. “Well-loved parents exist within their children long after they’re gone,” says Rauch. “The best gift a parent gives a child is a solid sense that they’ve been loved. It would be wonderful for everybody to have their parents forever, but kids often have very powerful feelings of being loved by and supported by a parent who has died. Sometimes kids tell me that they feel their parents’ goodwill present with them and have a sense of courage: if they’ve faced this loss, how hard could the SATs be?”
As cancer survivors, we probably all have a more visceral sense of the shortness of days, and the preciousness of time, than people who’ve never faced a life-threatening illness. When it comes to our children, what should we do with that? Make memories and make them concrete, Rauch says. “When we’ve spoken with adults who lost their parents earlier in life and asked them if they had a letter or photo album, what they’d want it to say, they’ve said that they want to know what their parents saw in them that was special and what their parents’ favorite memories were with them.”
So obsess about those photo albums and scrapbooks even more than the average parent. Don’t just stick pictures in the albums—annotate them, and write more than just “Jane at the lake, 2010.” Instead, write something like, “Jane about to jump off the dock for the first time at Lake Wannasink, June 2010. I loved watching her stand with her toes poking off the boards, teetering on the edge, a little scared and a little excited, with that fierce, determined expression on her face.”
Rauch suggests making a personal memory book for each child so that they can open it and follow the story of their life with you whenever they want. “Things that are highly emotional are harder if they fly in under your radar screen, so being able to look at these books when they want, in their own time, is good,” she says.
Making books like this is easy now that there are online services like Shutterfly that can create professional-looking, beautiful bound volumes with your pictures and notes. Rauch knew one mom who’d created a “year in review” book for her family every year at Christmas, featuring fun family photos and all the things that were special that they’d done that year. “Those books became extra valuable when she became ill,” Rauch says.
Another woman I know, who hasn’t ever faced a serious illness, came up with an amazing tradition when her daughter was a baby that she still carries on now that the little girl is seven. Every week, she writes her daughter a “love letter,” talking about all the fun things they did that week, what her daughter is learning and doing, and how special she is to her mom. Now, weekly might seem a little exhausting—but even doing that once a month, or once a year, will be a treasure for your child someday. All the more so if something happens to you—but it will be special to them even if it doesn’t.
Take more pictures. Take more videos. Make more scrapbooks. And make sure they all tell the story of you. Don’t forget to include yourself—parents are often the ones taking the pictures and the videos, and they inevitably become a compilation of the kids’ exploits. Occasionally, turn the camera or the video recorder or the pen on yourself and record who you are, right now, so your kids won’t forget. I didn’t lose my mom young—she passed away in 2008, when she was seventy-four and I was forty-one—but I still wish she’d done more of that in her lifetime. She was an inveterate recorder of family stories—everyone’s, that is, but hers.
Here are some other preparations you can make for your child in case “it” comes back:
Rauch’s final rule: “When it comes to things that can be emotionally challenging, don’t leave the story up to mystery.”
Emotionally challenging. That’s a good way to describe having children after cancer. Even at its “easiest,” parenting can turn you inside out. But when you’re building a family and caring for children in the shadow of cancer, there’s always one more suitcase to tote with your emotional baggage.
But—and here, I don’t want to sound like those sunny, perky, “cancer is a gift” sloganeers, but this is true—having had cancer also adds immeasurably to the rewards of having a child. Building a family is an undeniable expression of faith in the future. It’s sending a part of yourself out into a time when you’ll no longer be here. And it’s trusting that you will be here long enough to instill the lessons, values, and love that your children need. Having and raising children, however you get there, is the ultimate declaration of victory over cancer. Cancer didn’t win. It couldn’t take this away.
So if you are committed to having a family, to loving a child, after cancer, then don’t let chemotherapy, or low sperm counts, or a recalcitrant adoption agency, or a pile of paperwork the size of Mount Everest stop you. There’s a path for you somewhere. Find it, make it, or beat it into submission. Because every parent in this book will tell you: the journey was hard, usually expensive, sometimes discouraging, and often exhausting, but it was always, always worth it.