Sunday, January 29, 2012
Wednesday, January 18, 2012
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.
Monday, January 16, 2012
She had breast cancer herself several years ago. She went through surgery and radiation, but avoided chemo. She knows the story, has that thing that's much appreciated in cancerland: empathy, as opposed to sympathy. I've been thinking about this exchange recently, thinking about what it means for things to be over, for anything to be over. If you remember it, I suppose it's still there, it's still real. Does that mean that if you don't remember something, it never happened?
No, that's not what that means, but memory is a hell of an important thing. The other day I was smiling at a friend's video of her son learning how to walk when a thought struck me and I went from laughing to almost crying. I have no memory--almost none--of Augie learning how to walk. He took his first tentative steps around the fourth of July in 2010, when we were in the north woods of Wisconsin, a few days before I started chemo. I do recall a little bit of shaky walking on the deck of the house, but barely. I was still recovering from my second surgery, still reeling in the relief of my margins finally being clear and knowing I was stage one, BRCA negative and all of that, and I was scared shitless thinking about chemo. He really started walking a week or so later, and I was just in a fog--even though I never had chemo brain, my body was in such a state of shock in those early chemo days. We have a video of Lenny learning to walk--we actually staged it; put her Dolly on a chair across the room and made her go walk to get it. Poor Augie's got nothing. Gabe barely remembers those days either.
Sometimes I feel this cancer experience the most through the discovery of what is missing. Those memories of my son, for one. The ability to fantasize more than a few years into the future, for another. My long hair, that stuff that made people remember who I was, for a third. Some things are more tangible: for instance, I used to actually perceive my breasts as a part of my sexual life; they used to be an important erogenous zone for me. That's completely gone now--everything else about my sexual life is back to normal but that. Gabe has been bothered by this, but I've told him he can continue to enjoy them as much as he wants, but I just have this notion of breasts as harbingers of suffering that gets in the way of excitement these days. It's strange how that's happened, considering how normal my breasts actually look--almost exactly the same, save that small half-moon shaped scar. You'd have to do a double-take to notice. I was looking at myself, marveling at this fact, thinking about the physical distortions that other women go through that I was spared, when I noticed something else. What is that on my chest? Am I imagining it? Maybe I'm just flushed, maybe it's because I've been exercising.
Days later, I asked Gabe to take some photographs, to help me take stock of the situation. Now that I see the evidence, I know--I'm permanently sunburned on the left side of my chest, on my pec and my sternum, from radiation. I think it's fair to say it's permanent, since it's been more than a year. This bothers me at the same time that it makes me feel somewhat relieved. It's good to have some physical reminders of things, lest it all be wrapped up in my strange little mind, but it's tough to think about what that means--that I was burned so badly, that my chest muscles will, even according to my physical therapist, never be the same. I never even thought about what my chest muscles could do, what my pale skin was supposed to look like, until those things changed--until the old way went missing. So it is, I think, with most things. What is that saying? You don't miss your water until your well runs dry.
I've dealt with a lot of these intangible losses over the years, and I've mostly shrugged my shoulders at them, because when you consider what actually happened, things could have been a hell of a lot worse. I might have no memory of Augie learning to walk, but what does that matter to him? He can still run at me, do a flying leap, land on the left side of my chest, make me double over in pain, apologize and then sing me a song, all without considering the possibility that I might not have been here for that. And after more than thirty years of having pretty red hair be a huge part of my identity, I can now be one of those annoying people who can't really see the point of it anymore, thinking, damn, it really is just hair, what was all that time and fuss about anyway? I can sigh at the loss of my evenly-toned chest and then say, wait! What if I turn around? Can the strength I see there cancel out the weakness on the other side? Even if that's completely illogical, can I pretend just for a moment that it can? Can I stand here, rolling my eyes at my husband who is looking adoringly at my naked body, burns, scars, flaws and all, and say, this body still works, doesn't it? I've made it work as well as I could, so come on, take a picture. Who knows how long this will last, what we see through the lens?
Tuesday, January 10, 2012
Almost a year and a half ago, I wrote a cryptically-titled piece called “Pontificating Blog” the day before I went in for my last AC chemo treatment. Though you can’t tell from the title what the blog entails, it has become one of the most popular of any that I have written. I suppose at its core it is a long and ponderous word maze through what it means to be a “survivor” of things, be it epilepsy, horrific car accidents, cancer, or any other method of cheating death. Sometimes when I read back on such pieces I am amazed that I had the presence of mind and the self-awareness in the middle of chemo to write about cancer the way I actually felt it, the way I actually experienced it, without caring about what other people thought I should say. For a long time I have felt that everything I needed to say about being a cancer survivor has already been said, was probably articulated at the very beginning of this so-called journey. Just the other day I told Gabe I wanted to quit writing the blog.
I think I was wrong, at least about everything being said already, though my days of writing this blog might be numbered. There is an aspect of being a cancer survivor that I didn’t anticipate when I was in the middle of fighting it: survivor’s guilt. I am not actually qualified to feel this yet in relation to cancer, and I’ll explain that further in a bit. But I am well-versed in what it means to feel survivor’s guilt in general. I was talking about this with Gabe last night, and I told him that sometimes I feel that if I understand anything in the world, I understand what might be termed the penultimate level of suffering. You know, the suffering you endure short of the ultimate suffering. In other words, I’ve spent a good deal of time looking over the precipice, into the abyss of brain damage, permanent paralysis, and even death, without actually having to go there.
Most people reading this know what I mean. I was the six year old who had upwards of 100 seizures a day and still performed at the highest level in school. The extremely toxic medication that I took to control those seizures for years thereafter almost killed me, poisoning my insides, permanently altering my liver, but granting me a three year reprieve from further medication by leading doctors to falsely label me “cured.” The “classic” tonic-clonic/grand-mal seizure that I had in front of the entire sixth grade put me back on medication but didn’t alter my life drastically.
The car that hit me when I was nine almost killed me, put me in a wheelchair for months, forced me to learn to walk again on my own with no physical therapy, gave me night terrors for a year and a lifetime of arthritis, but ultimately had no discernible impact on the way I’ve lived my life.
Enter cancer. I have gone through multiple surgeries, extreme doses of chemo, radiation, menopause, baldness, and fear. I’m still here, wearing this strange “cancer survivor” moniker, supposedly some kind of ass-kicker, an example of what it means to fight and win. But I am actually not that at all. I am only 20 months in, not at the critical two-year mark or the more comfortable three year mark that would tell me that I might have a reasonable chance of ultimately surviving triple negative breast cancer. One of the many reasons I have decided not to join cancer support groups, besides that being something that doesn’t fit with my personality, is that I can’t imagine I have any insight to give. I have survived breast cancer the same way that most women do. It is not the type of disease that usually kills you right away. If you are able to look back on your life ten years later, well, perhaps you are a breast cancer survivor. Until then, however, it’s the same business I’ve grown accustomed to: that penultimate experience, that constant question of what if? And never—really, for me, never—why did I have breast cancer? The question I ask myself is a why me? of a different sort. Why was I only stage one when the odds were so stacked against me to even detect my cancer? Why, when I have been on the shit end of the odds stick, with a rare form of cancer at an age when cancer shouldn’t even be an issue, would I not one day find myself with metastatic disease? Why would I survive this, when so many others do not?
There it is—a classic case of survivor’s guilt, which I would argue is not guilt at all, but actually realism rearing its ugly head in a society that believes that physical limitations impart weakness. This has come up so often over the years. Once on a blind date I discovered the guy I was meeting was disabled; he used crutches or a wheelchair due to spinal meningitis he contracted as an infant. He didn’t want to tell me beforehand, assuming I would refuse to meet him. We were able to talk about my experience being unable to walk, being confined to a wheelchair, and he seemed to find it interesting to find someone who had a taste of his life. But that’s it, just a taste, just a dabbling. That didn’t stick with me forever. I glimpsed the pre-ADA world of people with disabilities, but I didn’t live there for good. I was told I couldn’t return to school, because there were no accommodations for me. The assumption was that I would return when I was “better.” Of course, so many people never get “better.” How would life have been different for me if that were the case? There I was, a smart and curious fourth grader, being denied an education that would eventually lead to graduate school, all because a bunch of morons were waiting for me to shake off that pesky limitation called “being unable to walk.” As if it were their burden to carry, not mine.
I was almost denied even that same education years earlier, when teachers assumed I couldn’t perform well if I had epilepsy. My parents fought that notion and I remained in “mainstream,” even “gifted” classes. But there were many kids who were not so fortunate. I had no brain damage, no speech impediments, no visible marks of epilepsy, unlike thousands of other kids who had real cognitive delays or perceived cognitive shortcomings due to the disease. When I wrote a piece for CURE, just weeks before my breast cancer diagnosis, about my experience with epilepsy, I was unsure of what to say. What did I know, after all, about what it means to have epilepsy? To fight it the way my aunt does--with multiple types of uncontrolled seizures occurring every day, making it impossible to drive or even listen to music or use a computer--but raise a family and hold a job and live life like everyone else? I doubted the usefulness of my story, but came up with some anecdotes anyway, including one about having to tell boys that I had epilepsy when I went on dates as a teenager.
At some point in my life I remember telling someone about one of these experiences. When I was 14, I went out with a boy on the football team, and his mother drove us to the movie on our first date. There we were in the backseat, and I told him about my epilepsy, as my mother had instructed me to do, to protect him (never was I told that it was about me—I understood that part of the burden of illness was to protect other people from its effects) from being caught off-guard if I had a seizure when we were alone. I remember his mother looking at him in the rear-view mirror, assessing how well she had raised this child before he answered. He didn’t balk or even barely flinch, and he seemed to strangely relish the idea of rising to the challenge. I recalled how he got all chivalrous in that misplaced adolescent way, puffing up his chest and asking what he should do if that happened, how could he protect me? It seemed so bizarre all these years later, so absurd, and I laughed at the memory.
My friend’s response to this story was insightful: “Huh. You had epilepsy. And you dated boys on the football team?”
Given the ridiculous nature of those early romantic forays, I have to admit I had never thought of it that way. Other everyday things were ultimately surprising for their normalcy as well. My hips were broken in multiple places on both sides—a tough feat to accomplish unless you get struck with a force so fierce that it breaks the one side and flings you into the concrete so hard you break the other side as well. Yet I delivered two babies naturally, even after my OB told me the only way I might have trouble delivering is if “you know, you had fractured your pelvis or something.” Right Doc--all over the place. What price did I ultimately pay for that? Just a few awkward moments of him looking at me strangely, asking me to stand up naked, then assessing my hips with his eyes and declaring “what the hell. You’ll be fine.”
I’ve been robbed at gunpoint and made the stupid decision to talk to the assailant who had the gun at my head so I could get my keys out of my bag without him noticing. I’ve fought off many people who were bigger than me, boys and men stronger than me, and I’ve never been raped. I’ve seen my infant daughter suffer a terrible allergic reaction to cereal when we were in the remotest area of Wisconsin, far from medical assistance, only to have her recover on her own before the ambulance arrived. I’ve experienced horrifying bleeding at 26 weeks when pregnant with my son, only to have it turn out to be nothing but a burst blood vessel. There are so many examples, and I know I’ve gone over these here, but I’ve always come out on the other side. My life hasn’t been about these things at all. It’s been so relatively calm, interesting, fun, and yes, even normal. I’d venture to say it’s a normal, almost pedestrian life I’ve lived, with some curveballs thrown in, keeping it all in perspective.
I’ve often wondered what it would feel like to just live in your body as if that was the natural thing to do. Those who survive cancer are supposed to get back there someday, to that new normal. Regardless of cancer, I just don’t remember what it was like to take it for granted that I could think, walk, talk, go through the motions. We have so much focus on conquering our bodies, proving to ourselves that we can do amazing things, accomplishing athletic or physical feats that we thought were impossible. Though I focus on some of these things myself, I am never able to get too far into that mindset, having never had an assumption of youth, health and cognition on my side. The amazing thing is to do any of this at all, to put one foot in front of the other, every day, to wake up and find that these parts still work, and that yes, on some level, I am still young and vital. The amazing thing is how far away the alternative seems, no matter how many times I’ve stared it down. The things that haven’t happened seem impossible, even if they have almost happened to me, even if they happen to all kinds of other undeserving people every day.
I’ve said it before—“somebody else” is always somebody else to everybody until that person is you. Sometimes the only way to deal with this reality is to write long, ponderous blogs where you can admit that the word survivor is a strange, complicated, potentially even untrue term in your particular case, blogs where you can admit that the fact of survival right now, this very minute, produces feelings of both exhilaration and of guilt. Because even as you write you are thinking, it’s best to write this now, to document how it felt to have overcome these things, before they come back. It’s best to picture yourself in the getaway car before you get caught; just try not to look over your shoulder too much.