Wednesday, January 18, 2012

Day 623: Cancer Mentors

Everyone who knows me knows that I am, in general, not a support group person. I am not really a cancer organization person either. I have become marginally involved in the cancer support group at the Federal Reserve Bank of Chicago (my employer) for two reasons. One is that the person who founded the group is another young triple negative breast cancer survivor who was very helpful to me at the beginning of my diagnosis, and I wanted to help her in return. Another is that I believe that there are human resources issues that should be addressed that directly affect younger cancer survivors who are in their prime working years, so I’ve become the squeaky wheel on that issue at the Fed. I also joined Recovery on Water (ROW), a crew team for breast cancer survivors, a year ago. I have been on hiatus from active rowing for a little while, but I am still involved with the team. ROW is decidedly not focused on talking about cancer but rather on exercising and fostering active teamwork. I only participate in one breast cancer fundraiser: the Beverly Breast Cancer walk; now that I’ve moved, the route will progress practically right across my new front lawn. I like it because it is not one of the many ambiguous events “supporting breast cancer” (whatever that means). The money raised goes directly to the local hospital where I did radiation every day for seven weeks, so I can get behind that.

Everyone who knows me also knows that I have a problem with complacency in my life. I am not able to just recover from cancer treatment, for example. No, I need to start a new job, buy a new house, get my body fat percentage down to 17%, or come up with some other cockamamie scheme. There’s one that’s been germinating in the back of my mind for quite some time, and I think about it often enough that I’ve decided to throw this out there and see if it sticks, if there’s anything there to go on.

I want to start a Big Brother/Big Sister organization for teenagers who have parents who have gone through cancer treatment. Call it Cancer Mentors, if you will. Here’s my convoluted thought process, so humor me: In most major urban areas, and many smaller towns, there are support groups, Gilda’s clubs, monthly meetings, etc., for those who are affected by cancer. You can attend these meetings as an active cancer fighter, a survivor, a caregiver, or a child of a parent who is going through a serious illness. You will meet people like you, who have gone through what you are going through. It doesn’t make it go away, but it can make it easier to deal with—if what you need is an understanding ear.

Moreover, while I have not been actively involved in the Young Survivors Coalition or other groups that bring together young people with cancer, I have learned something from attending ad hoc meetings for my cancer demographic. There are things that us younger adults deal with that are different than what children or older cancer survivors endure, including issues of sexuality, fertility, career advancement and discrimination, and parenting.

Being a parent of small kids when you are going through cancer treatment is hard. I mean, it’s really, really hard. It’s REALLY hard when those kids are babies who are still nursing, for example. It sucks to admit you can’t have any more of those cute little kids. It’s painful to explain why your four year old won’t be able to do gymnastics or swim lessons for the next six months, why you will be bald, why you will be scary and sick. It’s weird how you get emotional around other people’s kids, how you can barely stand to attend the recitals and performances, how you’re wistful all the time. It’s amazing to realize how imperfect you are, and you just have to cross your fingers and hope you didn’t screw your little ones up too badly at the end of the day.

And yet, I’ve come to believe that it is in some ways easier to have small children than it would be to have teenagers when you are going through this. When I decided out of the blue, in the middle of dinner, to tell Lenny about my cancer diagnosis and the reality of my upcoming surgery and treatment, I just gave it to her straight. She listened to me, believed what I was telling her, asked me some questions, and started to sleep better at night now that her crazy parents were no longer lying to her (“um, we’re leaving early today because we’re going to a meeting, Lenny.” “But you don’t even work in the same office.” Right, right.) I was the mom, and I made the rules, no matter how sick I was. I was in control of the message. If I wanted to stop wearing wigs to take her to preschool, what could she say about it? If I told her chemo would make me sick but I would feel better on radiation, she believed me. Talking about “bad cells” was sufficient. And for Augie, well, he knew something was up but of course couldn’t possibly understand what it was, not even being a year old when the shit hit the fan. I started writing a blog, knowing they wouldn’t read it until years from now, when the whole experience was hopefully much farther away. It was hard, absolutely, but I controlled everything.

Then I discovered something. The few teenagers I knew who had parents who went through cancer were voracious readers of my blog. One of our babysitters, whose mother had gone through breast cancer treatment a year or so before, continued to help watch the kids after I was diagnosed. She would text us on chemo days to see if we needed help, and I realized she was keeping track of when those days were. I could be bald around her and not worry about her feeling awkward. She would come over when we were both home, to help out when Gabe was just too overwhelmed emotionally, even when there wasn’t much to do. And we talked about cancer a decent amount; I was surprised about that at first. Also, my teenage cousin gobbled up my blog, often being the first person to read it; my aunt passed away from cancer three years ago, and the blog seemed important to her following that loss. My blog is long, and strange, and sometimes brutally honest, and I know it is hard for many people to read. So were these kids only interested because it gave a little glimpse into cancer in general, and that subject hit close to home?

I don’t think so. I think part of it was that I have always discussed in the blog what it was like to be a parent going through treatment, how I felt about my kids, how I did imperfect things as a result. What I understood from conversations with these kids and from parents who had cancer when their kids were teenagers was this: They talked about it a lot less than I talked to my own little kids. Other parents I encountered with little kids were often very honest with them as well, for the reasons I mentioned already. But for the teenagers, almost across the board, the details were left out, the hard conversations about suffering and death were left alone. Now , don’t get me wrong--it makes perfect sense to me. Teenagers know a lot about the world. They understand what cancer is, what it can do, and how bad it can turn out in the end. They also know enough of the world to subjugate their own feelings in order to protect someone else—their parents—from difficult emotions. Little kids are unable to do that. If they are hurting, they can’t help but show it, even in unconscious ways.

Teenagers can get distant or angry, self destructive or reclusive. They know when you’re lying, they know when you’re sugarcoating the truth. They don’t believe in magic, but they still think that they, and probably their parents, are invincible. They go online and do their own research about their parent’s cancer, and come to their own conclusions. They try to gain control of the situation, and are often put into caregiver roles themselves, because the strain on the other parent is too great, or there is no other parent, or simply because they want to help. And all the while, their parent who is going through cancer can’t, or really doesn’t want to, talk to them about it.

I am not out to change anyone’s behavior, to make teenagers talk to their parents about cancer. I also don’t think that as a society we need to say, oh, it’s understandable how that kid is behaving, look at what he’s going through at home. Sometimes kids—teenagers in particular (oh, how I remember--mom, I know how hard you tried to stop me from wearing this skintight, short skirt the night of my surprise 16th birthday party--yikes!) need a swift kick in the ass to get them back on track. But when you’re the parent with cancer, it can be hard to do that. You are already consumed with feelings of guilt and sadness, and you don’t want to play Bad Cop on top of it all. One of the reasons I think this mentors program could be a good idea is that I think it is unrealistic to expect parents who are going through cancer to be able to be the ones to hold their teenagers’ hands as the collective journey proceeds. On the one hand, you have cancer, and that’s the foremost issue you need to deal with, above and beyond everything else. On the other, you might be an emotional wreck yourself, and be less than an ideal candidate for solace. When a friend and I were talking about this recently, she said, “as a parent, wouldn’t you always look out for your kids’ interests and feelings first? Wouldn’t you always think about them first and yourself second, even if you were really sick?”

Nope. Or, maybe I should say, that might not necessarily turn out the way you’d think. Parents are human. It is almost indescribably painful to talk to your child about death, or suffering. You want to protect them from everything bad in the world, even when those bad things are happening to you. And, more selfishly—you want to see them grow up. While you steel yourself to do what you need to do to stay alive so that can happen, it can be an additional burden to have to be all practical and cheerful in your discussions with your children. You might do what I did, and go on walks or just generally leave the house all the time, because being around your kids at the beginning was too painful. You might quit your job, move, yell more or less often, pull yourself away from social activities, stop being able to go to your kids’ sports games, or do other things that are more in your interest than theirs. That’s ok. You have cancer, so you get a pass for less than perfect parenting. I might actually argue that putting yourself first is the right message—as a dear friend forty years older than me said when she learned of my cancer: “You do whatever you need to do. Lenny and Augie will get over it, as long as you’re still around.” You might not talk to your kids about cancer because my God, can you imagine not being around to see this beautiful, smart, funny, wonderful human being reach adulthood? You start thinking about who is going to give them advice, who is going to walk them down the aisle, who will help them find a job, if you’re not around. And then you cry and it’s hard so you don’t say anything.

And maybe, just maybe, that awesome and awkward teenager would like to know that’s what you’re thinking, but they know more than you think they do, and so they don’t ask because they don’t want to burden you. They lead you to believe it doesn’t bother them, which is total bullshit. So maybe that kid could talk to some other parent who has gone through cancer, one who would be willing to talk about the tough stuff from the opposite perspective, or talk about normal stuff that the parent going through cancer doesn’t have the energy to focus on right then. If your kid thinks it’s embarrassing that you’re bald, you don’t have to be ok with that. You do what you need to do and leave the wig at home and they can suffer that teen angst; there’s no time for guilt. But that kid could gain something from talking to some other formerly bald person, perhaps, to get some perspective on what’s going on there. You don’t have to stop asking your kid to make dinner if you’re too weak to do it, but maybe that kid could get some advice on what parents with cancer really can stand to eat. Going through menopause? Sleeping in a different bed from your spouse? Really skinny, or really fat all of a sudden? Don’t even try to talk to your teenager about that, but maybe someone else should. Someone with a little distance can explain. You get what I’m saying…let’s not talk about what it’s like to go through what you’re going through. Let’s talk about what it’s like to be the other person. Let someone who isn’t related to you bear the burden of telling it like it is. Maybe I’m nuts, but I feel like that could be helpful.

I know I wish I could ship Lenny to another parent sometimes when she tells me, after hearing that someone has died, that by the way, she’s glad I don’t have cancer anymore. When she asks how old I’ll be when she’s 80, I just cringe. When she talks about her hair and says she hopes she never has cancer so it won’t fall out from the chemo, I just say me too, and try not to bawl like a baby. I wish I knew what to say when she is sitting there reading the paper (yes, she’s five and she reads the newspaper) and sees that weather patterns have changed over the last 1,000 years. She asks, what will it be like in another 1,000 years, and I say, well, none of us will be here to see that—no one lives that long. No one, mommy? Not even me and Augie?

No, honey, not even you and Augie. Then I turn away with tears in my eyes, wanting to say, excuse me, but if you want to talk about that, can I call in one of the neighbors? That conversation is just too much. I just can’t do it. I had cancer—cut me some slack.

If this idea sounds like it has any merit, let me know. Perhaps the best strategy is to match a kid with an adult who went through a similar type of cancer as that kid’s parent. Perhaps the type or stage of cancer doesn’t matter—I’m not at that point in the thought process yet. Maybe this would best be accomplished as a side project of Imerman’s Angels or Gilda’s Club. Perhaps this whole thing is a terrible idea, or has already been done. Regardless, if you know any kids, or adults who went through cancer treatment while they had children living at home, and you think they might find this idea to be interesting, please put them in touch with me. I think it would be best one on one, with some kind of real matching process, to contrast with the randomness you are bound to get in any kind of regular support group. I’m putting myself out there as one of the potential mentors, obviously, so maybe there’s a kid out there who would find me useful. But you know, I have a big house, and I don’t mind talking about really strange things, so I could host a small group as well, at least at the beginning.

Just don’t expect my kids to be there. I’ll send them over to play in the park while we talk.


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  2. Sounds like a fine idea to me....

  3. I love this idea. As the mom of two teens, I can't imagine going through something like this but would be ever so grateful of a program like this to help my kids through it.