Welcome to the Monday Night Cancer Club. I'm sitting in tonight, and it's a pleasure to be here. On Mondays, usually I'm asleep by now, sleeping off my weekly chemo. This week and next my treatment's been moved to Tuesday, to accommodate the holiday. So I'll be around next week, too.
PeregrineKate suggested I write about raising children while taking chemo, so that's tonight's topic. Next week, I can write about recurrence. So, without further ado, here goes:
Chemotherapy is a hard slog, a marathon, however you cut it. You're probably thinking well, duh!; if you didn't already know that, you wouldn't be here.
In fact, although there are worse things than chemo, there aren't many. Most of us, when we reach the end of treatment, come limping over the finish line, drained and beaten up and fundamentally changed.
Even so, it's harder on our families than it is on us. When you're a patient, you know what you have to do; you have a plan. Your family and friends don't. They have to figure out how to be supportive and encouraging, even as they're imagining themselves in your shoes and hating the idea. In some ways, chemo refines us all--it puts our lives in perspective, cleans up our goals, strengthens some some of our bonds. But it destroys others. After all, there's nothing like a potentially terminal disease to stress a relationship, be it a friendship or a marriage.
On top of it all, if you're parent with cancer and undergoing chemo, you're still, first and most importantly, a parent. What do you share? What do you keep from the kids? If you're completely honest, are you traumatizing them unnecessarily? Are they too young to understand? Will they ever forgive you? If you're less than honest, are you setting them up to hate you for withholding information they have the right to know? Will they ever forgive you?
When I started thinking about this diary, I knew what I was going to say. But the more I thought about it, the more complicated I realized the whole issue is. So I hope this starts a conversation and we can share our collective experience. After all, I'm not a psychologist, I have no special experience counseling children, and I have no special wisdom or window into the lives and relationships of other people. I've been in chemo, with a few brief respites of remission, for a full seventeen years now. Most of the people who were diagnosed with me are gone now**, although there are a few happy exceptions. That itself is a strange feeling--everyone being gone--one that brings me no small measure of survivor's guilt (but that's a discussion for another day). I've seen a lot of parents deal with their children and their cancer. Some did it well and came through with their families strong, some...not so much. So, between their accumulated examples and the pretty decent outcome that we had raising a child in the midst of what we called "thrill-a-minute healthcare," I feel that I'm qualified to start the conversation about what worked for us and a few others, and what didn't seem to work in helping kids deal with parents' cancers.
**Treatments today are very different than they were even fifteen or seventeen years ago, and back then I looked at treatments ten years old and thought them horribly barbaric. Today's chemos are more targeted; treatments tend to be more comprehensive, and there's more attention to side effects and adverse reactions than there were in my early days. Also, most of the people I knew early on were, like me, breast cancer survivors. Today's protocols are different. Women who got lumpectomies and no followup treatment, neither chemotherapy nor radiation, today will often be recommended for either, or both, or a genetic therapy like Tamoxifen, Herceptin, Arimidex, etc. In other words, the world today in primary treatment is not the one I knew seventeen years ago. Don't be afraid.
First of all, families are what they are, with all their quirks and dysfunctions. I wish it were that, when a family got the news that one of its own is fighting cancer (or any serious illness, be it physical or mental, because cancer is only one of a whole array of disease whose slightest brushes change lives, and whose more serious involvements lead to chronic--and expensive--conditions or death) the whole family would dispense with drama, summon its best qualities, pull together, make the patient's support the most important thing in the world and free him up to do what he needs to do.
If only it were so easy. But the stress of illness only makes families more like themselves--strong relationships get stronger, dysfunctional ones only get more difficult. So, first off, if your family is dysfunctional (and whose isn't?) if you want to protect your relationships with your kids, you need to take control of the environment. Make it clear to everyone that you are going to call the shots, and they are going to listen and respect your wishes. If you have to threaten them, threaten them. Or tell them that, once you're gone, you'll come back and haunt them...hell, in the right circumstances, it just might work. Use whatever leverage you need to to protect your childrn. Their bruised feelings are nothing compared to the damage a well-meaning but selfish interloper can do to your kids.
The exception to the "I'll go medieval on your ass" solution to family distress is, of course, your spouse. You need to work out what you're both comfortable with, the level of sharing with the kids, how much to involve them in your treatment. This means, of course, that you have to trust your spouse and your spouse has to be there for you. If this isn't possible, you need someone else to support you, be your counterpart, your stand-in, your trusted advisor. That can be a friend, male or female, but it has to be someone you would trust your kids with.
Now, to the kids.
Your instinct is to shield them. You want to keep your pain and fear from them; you want to keep them innocent. Even if they're adults, your instinct is to shield them.
I know parents who were dying and still wouldn't tell their children they had cancer or that it was serious. Not surprisingly, they also weren't honest with themselves, either. Delaying treatment, refusing to acknowledge their illness, relying on prayer or alternative medicine or spiritualism to miraculously heal them, they wouldn't recognize how serious their conditions had become. They told themselves and their friends that they were doing it for their kids, but they were really hiding the truth from themselves.
Because there may come a time when you realize you're not going to get better, and the best you can hope for is to keep your quality of life for as long as you can. I don't know exactly how that conversation goes. I know people who have had it with their children, that it's time to focus on making the best of the time you have left. Often it takes on a religious strain, "We're praying for healing, but not necessarily in this world."
Even when parents don't communicate, even if the conversation never happens, the kids know. They're observant, and smarter than we ever give them credit for being. They usually have it figured out before we do, so pretending that nothing is wrong just perpetuates a charade; we pretend nothing's wrong while everything's falling apart, they pretend not to see, and meanwhile time, incredibly precious time, slips past.
I never understood why parents wouldn't tell their children--even their grown children--what was happening with them. I had a friend from the breast cancer support group, Debbie who, when we met, was in remission. She had had stage 1 cancer, but the tumor had been on the large side. She refused chemo, even though it had been recommended. She said, "There's no way I was going to lose my hair or let anyone see me that sick."
She had a daughter who was in high school when her breast cancer came back. Her doctor, his practice an hour away at a big teaching hospital, kept putting her off, ordering tests that took a month to schedule and another month to report in. The doctor wasn't satisfied with the results and scheduled a retest, which took another two month cycle, only to tell Debbie then, "The test wasn't conclusive. I want to order another kind of scan." Which took another month to schedule, etc. etc.
Meanwhile, Debbie's condition was deteriorating, but she wouldn't hear any criticism of her doctor. When we asked about her daughter, she would say, "She's busy at school. I don't want to upset her." She had one excuse after another, whether it was cheerleading, or exams, or prom, or soccer or volleyball or finals. In the end, she died without every having said a word to her daughter. After the funeral, her daughter told me, "I don't know why she wouldn't ever let me talk to her. It was like she didn't trust me. And she wouldn't let me say all the things I wanted to tell her."
That's one extreme. On the other hand, I know kids who don't want honesty from their parents, and who act as if Mom's cancer is a cosmic plan to inconvenience them. Even though teenagers are by nature the center of the universe, I see their attitudes less as selfish disinterest and more as a defense mechanism, a shell put up because it's too terrifying to admit the possibility that Mom might not be there forever.
What do you do when you're a witness to either extreme? In general, even though it's anguishing to watch and maddening, even though it's unfair and cruel, stay out of it. It's not your relationship to navigate. There are exceptions, of course, but intervening is a dangerous tactic; the times I've seen it happen that a third party tried to mediate between parent and child it backfired and both sides turned on the hapless poor slob who was only trying to help. Some things are best done by professionals.
When you don't have open communications with your kids to start with, cancer's not going to be the locomotive that plows through the obstacles and clears the way, although it can provide the catalyst for change, if both sides want to work at it. That's best guided by a therapist, because the illness further complicates already-difficult relationships.
After thinking about this for the better part of two weeks, I really can't offer any wisdom; there's no formula to make it easier for you, or easier on your kids. I think the way to make everyone pull together is to work at it. There's no easy fix I know for kids who use chemo as a chance to pile on and make it an excuse to point out just how rotten a parent Dad is being, how selfish he is just because he can't eat or sleep, and he's bald and pale and ugly and what do you mean you want me home before one a.m.? Except maybe that's when Mom pulls the kid aside and spells out just what's at stake, and if the kid can't manage to behave decently to Dad, Mom will make sure that Little Darling never dates again, doesn't drive until 18--oh, and by the way, we expect your dad to recover, but if he doesn't, you're going to sit at his funeral and the only thing you'll be able to think about is how awful you were to him when he needed you. When he does recover and lives a long life, years from now you'll be an adult, sitting at his funeral, and you'll think about the selfish pain in the ass you were to him, and you will never get the chance to apologize.
That's not Jewish Mother guilt, by the way. It's a realistic assessment of future outcomes. Because there's always the chance that chemo won't work, or will only work for a little while. By the time Little Darling recognizes how bad things have gotten, apologies won't alleviate the guilt. And it's something that only the parent's partner can do--no third party has the leverage to pull it off. And it's one reason that the parents have to agree on how to approach the kids, to create a united front. Cancer isn't much different from any other catastrophic event, and parenting through can be very tricky.
That's for older kids. Young children present a wholly different set of challenges, and young kids are harder to figure out. You're probably familiar with the concept of magical thinking in children, that it's normal for a young child, in rage because of a denied toy or enforced bedtime, to think I hate you, I hope you die. Then you get sick, your hair falls out, you have to go to the hospital for a fever in the middle of the night and you're gone for three days, and the kid thinks, This is my fault. I killed Mommy. That guilt gets buried deep, so deep the child will not voice it, but it becomes something that will always be there, that fear I killed my mother. Even if you recover and spend the rest of your life in remission, that guilt will be there.
That's why, first of all, you have to explain to the child that this just happened and she had nothing to do with it. Even though it sounds obvious, and even if you might mention it, Of course, silly! Of course this wasn't your fault! the feeling will nag at her, unless you address it clearly and soberly. I thought I had covered that base adequately when my son was little and I had, until he learned in Intro. to Biology that pregnancy involves wide swings of hormones, and then later, that breast cancer is often hormonally driven. He put the two together and concluded that he had given me cancer. By then, it took a heap of disabusing to alleviate the guilt, and I expect even that didn't do it entirely.
I thought we did it right. My son Jack was two when I was diagnosed. We shaved my head when my hair started to fall out, so he could see it go and help me scatter it for the birds, so they could use it in making their nests. He wanted to shave his head, too, and give his hair to them; I talked him into a haircut. We played games with my wig, and he learned the word "cancer," but didn't understand it. When I had my first recurrence he was five, and it was harder. Harder because I had been misdiagnosed at first, deteriorated really fast, and had an awful prognosis. [Side note: I also had a family member who thought it was a good idea to go behind our backs and tell my son that, when I died, she was going to be his new mommy. That caused far more trouble than every other incident during the whole term of my treatment lumped together, and remains a very sore point today. That's why I wrote the part above about managing the family and friends, at knifepoint, if necessary. It's not for your sake, but the kids'.]
At five, Jack understood that I might die (in fact, after my relative got done with him, he was sure of it). To counteract both his fear and the unwelcome interference, we made sure he knew when my treatments were scheduled. I was admitted to the hospital for three days for them, and frequently I'd be readmitted a few days after for infection and fever, which required antibiotics. Jack and my husband Andy came every evening. Jack brought his toys, and we played on my bed. I was fitted with a pheresis catheter that had to be flushed with saline and heparin every day. Every day he would help me lay out a sterile field, he'd glove up and I would let him push the saline and heparin. I'd always mess something up so he could correct it, and that way we made sure he was part of it and had some positive responsibility.
Despite all our efforts, we weren't entirely successful. He came to see me just once during my bone marrow transplant, and the visit was a disaster--it did nothing but scare him. After that, and through my second recurrence, it became harder and harder for him to cope with school and being a normal kid, while I was slowly getting better or getting worse. The school counselors were worthless, and finally we took him to a child psychologist, who helped some, and gave us advice about going forward. There wasn't much I remember of it; in fact, the advice was kind of amorphous. The most specific thing I remember is that he suggested encouraging Jack to get into physical activities that would help him burn off energy and pent-up aggression.
When it came to the acid test of honesty, I have to admit that I failed, at least in one sense.
I expected that I wouldn't last much longer, but when my five year old son looked into my eyes and asked if I was going to die and if his aunt was going to be his new mommy, I told him it would absolutely not happen. Although in the end I told the truth, at the time I thought I was lying. I promised him that I would always be his mother.
I like to think we did a good job with him. I will say that, absolutely, if I hadn't had Jack to be responsible for, if I hadn't had to put his needs above my own, my treatment would have been much harder for me. We came through it all a stronger family for it, at least a stronger 2 parent/1child family. There are lingering strains in the rest of the family, as relatives still nurse hurt feelings over my strict control over what happened inside our house. It was what we needed to do in order to not get torn apart, and I won't apologize for it.
Even so, despite all our care and thought, we weren't completely successful. Today, twelve years after the fact, Jack has no memory of my chemo. A big part of his childhood is a blank, because the trauma of my illness was too hard for him to cope with. One thing that happened back then was that, at the age of five, Jack became so angry at God that he refused to believe in him. He's an atheist now, but he doesn't exactly remember how he got that way. The unfairness of what happened, having both my mortality made so obvious and his childhood upended so thoroughly, changed him. I don't know how we could have done differently. We controlled everything we could, minimized what we couldn't help, but it still wasn't enough.
What I've come to realize is that there's no easy way forward. Each path is as unique as each family.