When I was growing up my father was diagnosed with cancer, a metastatic, malignant, melanoma that grew as a mass of black on his lower back (imagine a giant portobello mushroom sprouting where it shouldn't be).
Back then, in the late 1960s, patients were hospitalized for longer times than they are today, and my father spent long stretches in the hospital. His longest stay was three weeks. Shorter stays, for tests done in house, were but a few days. But for a child--me--any amount of time he was gone seemed awful long and a bit dreary. I bet for my mother, it seemed even longer. My father did survive, and lived for many years after that. And yet.
Cancer was a word no one uttered in our family. At least, not in front of me. Still, I knew on some level what was going on. The more we didn't say the word, the bigger the word and all the stories about "the word" I tossed around in my head seemed to get. It was like the giant portobello on my father's back had turned into a cloud that followed us around. It was as if it had more control over our lives than we did.
Jen Singer understands this feeling, as most parents do. The married mom of two boys, she was diagnosed with lymphoma a half decade ago and, thankfully, is doing great. She launched the website Parenting With Cancer last year. The idea came after her own diagnosis, when she went seeking information about the exact subject on the internet, but came up with little.
Jen, who is also the creator of the award-winning MommaSaid.net, says this:
"There is such a wide range of emotions that both parents with cancer and their children go through. We parents feel unanchored, because we are the ones who are supposed to be able to take care of our kids. For the kids, it's disconcerting because Mom or Dad is sick and can't parent the same way anymore. Everyone's lives get turned upside-down.
"Some kids, especially older ones, may pull away to protect themselves from the pain or to be less of a burden for the parents. I know of one teen who didn't report being bullied while his father was sick, because he didn't want to pile on more problems for his parents. He waited a year after the event to report it to his mother.
"Younger kids can get more clingy. Older kids will get clingy in their own way by becoming hyper-vigilant caregivers, worrying about their sick parents' comfort.
"For my own kids, one took it emotionally and the other physically. My son's fourth grade teacher reported that he looked like "he had the weight of the world on his shoulders" at school. My other son developed headaches and pneumonia while I was in radiation treatments. (I knew he had pneumonia before the doctor called with the results. By then, I'd seen quite a few chest images!)
Here's what Jen, as a parent and for parents, recommends:
"Try to keep as much of a routine as possible. If you can get someone else to carpool them to their regular activities and to keep up playdates and other social activities, it gives the kids some sort of semblance of "normal," while giving both parents a break at home.
"Don't stuff your emotions. Sure, you need to be strong for your kids, and I don't recommend dumping your fears on them. But do address the elephant in the room. If they hear from you that it's okay to be scared, worried, angry, sad, etc., then they know it's okay to feel whatever they feel, and they won't swallow negative emotions.
"Get help for the whole family. All of you need someone to talk to. If you can find everyone qualified counselors or group therapy, it will help. There are grief groups for children at churches and elsewhere than can help them. You should find other parents with cancer or survivors who can relate to what you're going through."
Gina Shaw is the author of Having Children After Cancer, a book "focused primarily on the decision to pursue having children as a cancer survivor, and not so much on combating cancer as a parent," says Gina. "Although there is a chapter on dealing with questions about your cancer history from your children, and on the inevitable fears of recurrence and worry about leaving your child without a parent." She answered my questions from this, the latter perspective:
Meredith: Tell me a bit about your story - and what truths you came away with?
Gina: As I mentioned before, my husband and I were married less than a year and trying to conceive our first child when I was diagnosed with stage IIB breast cancer. So I spent pretty much the entire next year in treatment and trying to reassess how we would become parents. We adopted our oldest daughter, Annika, in a domestic open adoption at birth, and we have an open adoption relationship with her birth mother. When she was about 15 months old, we started thinking about having another child, but the agency we used to adopt our daughter was having a lot of issues. (They later closed.) So we decided that, while we were trying to identify another agency, we would at least try to conceive on our own. Much to our surprise, without any assisted reproductive technology other than an over-the-counter fertility monitor from Clearblue Easy, we got pregnant the first month of trying with our son, Adrian, who's now 4. I was 40 when I got pregnant with him, and when I was 43, I was able to get pregnant again, and our daughter Katia was born in 2010.
The single truth that resonated for me through this whole journey, and the message of my book, is that being a survivor of cancer, or any life-threatening illness, does not have to take away your dream of being a parent or having more children. Illnesses like these can make you feel like you're broken, like certain paths are closed off to you. But they don't have to be. If you have love to give to a child, even as a cancer survivor, there are ways that you can become a parent. It may not look the way that you imagined it when you were 13 and playing "Life"—it may be a lot harder and more expensive and more painful--but it can be done. And it will be worth it.
Meredith: There are the practical things a parent will be concerned about, but also the spiritual concerns that are so visible or tangible. Can you provide some insight about how, after or during an illness (or at any time anxiety creeps in) how focus on one aspect might provide comfort for the other?
GINA: I think the spiritual and emotional concerns are very easy to get carried away with when you are either facing a serious, life-threatening illness as the parent of a younger child, or choosing to have a child after having experienced cancer or another life-threatening illness. You can go down rabbit holes. But the practical issues of having a child, or taking care of a child, can actually give you something specific to focus on so that you don't plunge too far down that rabbit hole.
That's the great thing about kids: they constantly root you in the real, the practical, the immediate. They don't stop needing their noses wiped, lunch made, their Kung Fu Panda action figures found, because you're freaking out about your own mortality. That's not to say that you shouldn't be allowed to do that freaking out, but kids can bring you back from doing too much of it.
Meredith: As a parent in general, coping with one's own anxiety about just about anything can be a challenge when there are children around who have their own needs. Any insights on what works? What doesn't?
GINA: That's some of what I was talking about above, at least for me, the kids themselves actually are a kind of therapy for the anxiety. Yes, I worry about them. Yes, I grapple with my fears about cancer recurrence and what might happen to my children if the cancer comes back and particularly if I die before they grow up. But there's only so much time for that worry because you can't spend too much time navel-gazing and actually be an active parent.
Meredith: In recovery from illness, it's important for the individual to keep the focus on him/herself, to conserve energy, etc...again, how does a parent truly balance? Or, perhaps, balance is a myth and we would all do ourselves a favor by not trying to be so perfect about that? Thoughts?
GINA: For the cancer survivor who wants to become a parent or to have more children, it can actually be helpful to have that goal as a focus to take away some of the constant attention on the stress of the illness itself. When I was diagnosed with breast cancer, my husband and I were newlyweds and just about to start trying to conceive our first child. All of that had to go on hold, but during the "cancer year" that followed, I distracted myself from treatment side effects, late-night mortality fears and survival statistics I kept tormenting myself by Googling online by researching all aspects of adoption. I studied agencies, debated between international and domestic, filled out paperwork and
When you have cancer, it feels like your life has been put on hold to grapple with this beast, and being able to focus on a long-term goal, a goal that is about life after cancer, a goal that requires faith that you will be around to pursue it, is a bit like therapy.
And yes, I agree that trying to find some sort of "perfect balance" is a myth. I actually recently interviewed actress Uma Thurman for a magazine article and asked her about work-life balance. She called the idea of balance "kind of an assault on reason." While she was specifically referring to the notion of achieving some sort of perfect equipoise between career and parenting, I think the impossibility of perfect balance, and the tyranny of feeling like you have to find it, is relevant to the daily journey of managing illness as a parent as well.
Meredith: How does adoption, if it does, play a role when a parent becomes ill?
GINA: For the most part, it really shouldn't; you're the parent, no matter whether the child is biologically yours or not. The stress of how you will care for them during your illness, and what might happen to them if you don't recover, are the same. But in a sense I think there may be some sort of deeper feeling of responsibility when you have adopted a child given a history of serious illness. This child has already had at least one loss in his or her life, the loss of their original, birth parents. Those of us with a history of cancer, or other life-threatening illness, are acutely aware that we may be putting our adopted children at greater risk of a second loss. That's a huge moral and emotional responsibility. I think we live with it first by understanding that it's not guaranteed to any parent that you will live to parent your child to adulthood, and second by knowing that we have a particular responsibility to make every moment count with our children. All parents do, of course, but those of us for whom our mortality is more than just a distant "someday" issue feel that much more acutely.