Day 690: Going Through Puberty...In Your Thirties

So, I’ve been thinking about writing about this forever, but it just seems too absurd to even put out there. And yet, that’s why I do this, right? I write this blog to bring a little bit of the absurdity of cancer into the consciousness of some portion of the general public.

Today I’m going to tell you what it’s like to go through puberty. When you’re in your thirties.

I had a fairly mellow real puberty experience a quarter century or so ago. I was a major tomboy from the age of 8 to about 12, but I was pretty comfortable with myself at that time. I resented my mom for making me buy a training bra when I was 10 (I mean, she stopped wearing them when she was 17, so what the hell?), and I found it more than a little annoying when I got my first period a few months shy of my twelfth birthday. I read all those Judy Blume books and didn’t relate to any of them, except maybe Tiger Eyes, because the girl in the book had some legitimate problems. Even Forever seemed cheesy, and I knew I didn’t want to ever have sex with boys who named their penises and expected me to use said names in conversation.

I wore some strange clothes in junior high, in part because it was the late 80s, and in part because I was figuring out how to actually dress like a girl again. I liked boys who would never like me back, and I was vague and indifferent to the ones who did like me. I would give anything to get a little bit of my dating haughtiness back from the golden ages of 12-14. I would say things to boys like “I don’t want to talk to you on the phone right now.” “I’m sorry, I don’t like you that way.” A boy would say please, I would say no. When did I learn to hide my feelings and lie?

But I digress. The point is, I went through the horror of 8th grade like everyone else (I think that’s the nadir of American children’s lives), and yet my awkwardness was relatively muted. I was pretty comfortable with my body and saw no reason to either hide it or show it off. I dated a lot, and almost all the boys I dated fell into the category of “kids who were so nice to me their friends made fun of them.” I liked fooling around and eventually I liked having sex and I never felt any regret about the things I chose to do or not do. I never had acne. Shit, I never even had bangs. I look at pictures of myself from that time and I look shockingly normal, given the fashion trends in the early 90s.

I did have some issues—my periods were so heavy that I was anemic in 7th grade and was almost put on birth control pills to help, until they realized that would interfere with my epilepsy medication. I got sick every month, and my cycles were long. But I never had any PMS (just violent vomiting for a day once my period actually started), my moods were fairly constant, and transitioning from being a girl to a woman was neither difficult nor surprising.

Then, I went on the pill when I was 18, something I would give anything to do over, given how sure I am that 11 years on the pill eventually led to my contracting triple negative breast cancer, but again I digress. My cycles suddenly became regular, short, and painless. I never got sick. I didn’t gain weight—well, not right away. I think the pill made me gain 15 pounds or so, but it took several years.

Then, fast forward. I went off the pill at age 29 in order to conceive a baby, and it worked. A few months later, Lenny was growing in me. I have never gone back on the pill, but of course I spent much of 2005-2010 either pregnant or nursing, so I had no idea what a “normal” cycle would be for me. When I began having normal, regular periods when Augie was less than 3 months old, even though I was exclusively nursing him, it seemed strange, but I figured what the hell. Let’s see what happens when I stop nursing.

I never really got to find out. I was nursing, then I found out I had breast cancer, and within four months I was in chemo-induced menopause. IT hit me like a truck. I literally had hot flashes every ten minutes all day long. ALL DAY AND ALL NIGHT, I would feel that fire tear through my body. I lost my natural lubrication and sex, while possible and eventually pleasurable, was depressing to me. Sex had always been so easy and so fun for me, I was more like a guy than a girl in the way I perceived it. I thought about it all the time—until menopause, when I never thought about it at all. How can hormones change your actual thought process? I never would have believed in the close mind-body connection of sexuality if I hadn’t seen the disastrous effects of menopause on my body and my desire. Menopause depressed me so completely. And then, it left me—so completely. I was desperate with hot flashes and sadly missing my sexual mojo when BAM. I was back in business.

And I started going through puberty.

You might think I'm exaggerating, but think about it. After Augie was born, I lost weight like crazy, and I've been hanging out in this size 0/size 2 reality ever since. Because of this, I shop in the juniors department at my local department store, where the salesladies have taken to setting aside size 26 Silver jeans for me. I think they like talking to people who don't have to come into the store with their mothers. Look, she has her own credit card. Go help her! God knows I need it.

Plus, I have new hair, and people treat me differently. I am like a tween in my bathroom, awkwardly trying to figure out how to use a straightening iron. After being bald and generally not worrying about what people thought of my looks, I am surprised when I get attention from men. And it's an adolescent surprise, full of flattery and pleasure but trepidation and suspicion as well. It makes me feel 14 again. I am in better shape than I have been in years--I might be in the best shape of my life in some ways, with my relative musculature and strength given this petite little frame. And yet I feel unsure of myself. I worry that I am too fat, or too skinny, or too something, which I never have really worried about, at least not for more than a fleeting minute. I look at and feel my breasts a lot, not to try to detect cancer, but out of some kind of absurd appreciation for what I've got left.

Are you there, God? It's me, Katy. I think I've lost my damn mind.

Anyway, for the last year, I have had periods every 24-28 days. These cycles are shorter and more regular than any I have had in my 25 years of menses. They are completely different, as well—the pattern of bleeding is very consistent but nothing like what I have ever had before in my life. Add on to that the fact that for the first time—EVER—I have every PMS symptom you can name, and it’s like 9th grade up in here sometimes.

I gain 3 pounds in the week before my period every month and my clothes don’t fit right. Then I pee nonstop for 24 hours and it’s all good. I get bitchy, or I yell at Gabe for no reason, or I start to cry on the train, and it’s like a little hormonal alien has invaded my body. I get headaches the day before my period starts, and I have a night of almost complete insomnia (with less than an hour of sleep) like clockwork once a month. I have bad cramps on that first day. My libido, which was always fairly constant, disappears for several days about a week before each cycle, and then comes roaring back and for most of the month I’m like some kid who’s discovering how awesome sex is.

Oh wait, I am actually that kid, because I had six months on the other side, and now I’m trying to make up for it.

But again, I digress.

I am too old for this shit. Pregnancy hormones, fine, I can handle that. It’s expected and you can talk to other moms about it, because everyone goes through that to some extent. But who do I talk to about this? How do I get used to new cycles, new hormones, new patterns that disrupt my life WHEN I AM 36 YEARS OLD AND I SHOULD HAVE BEEN DONE WITH THIS 20 YEARS AGO?!

I mean damn. My oncologist always asks me if I’m still having cycles, and he always seems surprised when I tell him how freakishly NORMAL everything is. “Well I guess we reset you with that chemo!” Ha ha, mother…

You know what I’m saying.

Every month it’s new to me. Every symptom comes as a surprise, and I feel ignorant, and young, but not in a good way. It’s just another sign that I’m not used to my body—the body that I have always felt fairly at home in, no matter what it was doing to thwart me.

Stupid cancer.

I’m starting to get it, starting to adjust to this new normal, but it’s tough. Cancer brings you to these weird places, because you can’t appreciate things in the same way that other people do. I could be happy with the regularity of my cycles, with my raging hormones, but it just makes me worry that somehow that will trigger cancer cells to blow up on me again. I worry that my cycles are short and that I have more periods every year than I should have. I think about menopause, about how awful it is, and that Flowers for Algernon feeling comes back to me and I want to rage against the possibility that I will deal with that again in 5, 10, 15 years, that I will lose all of this.

Shouldn’t I just be glad if I get to those 5, 10, 15 years, you ask?

You don’t ask that if you’ve had cancer. Everyone who is a survivor needs to be able to think like you do, that those 10 years will come, and we will still be here. If we didn’t think that way, we would be insufferable to be around. And yet…we all acknowledge that those years might not be intended for us. We acknowledge that while others go through middle and old age, we might not get there ourselves.

We know that most people don’t think about dying while they’re going through puberty.

So what is there to do but laugh? I’m in on the joke, but you can see it, can’t you? There’s something there, behind those eyes, something that knows that it’s funny and knows that it’s not. I’m just doing my best to live inside that something.

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.

Day 539: No Particular Place to Go

I know I said earlier that I would dedicate my October blogs to talking about how much I hate breast cancer awareness month and why, that I would do my part to do some real education about the actual disease of breast cancer, rather than the hype. I guess I lied. I'm tired of the whole thing, tired of feeling like I have to explain that this is not the model cancer, that in fact greater strides have been made in other types of cancer, regardless of how much attention our boobs get. I'm tired of hearing about boobs. I'm tired of cute little articles encouraging women to do self exams by giving all the reasons that we all love the tatas, they bring us so much happiness, the boys love them, they always look amazing, they're a great conversation starter and all that bullshit. I'm tired of hearing other cancer survivors say it seems like we value breasts over other body parts, as evidenced by the popularity of supporting breast cancer research. My life is not a body part, and I don't now, nor did I really ever, give a shit if men like to look at my breasts. The idea that those comments, or the infamous, well, if you have to get a double mastectomy you could always get new awesome boobs!, is even a part of the conversation about breast cancer shows that we have the ability to be a collective society of idiots even when we have the best intentions.

So, enough of that for now, and if you ever want to know what I REALLY think about breast cancer awareness, we should talk offline. I know I am the queen of subtle.

Here's my issue, here's what getting me right now, this minute. I feel like I have turned into a Mexican jumping bean. I am having serious problems sitting still, concentrating on anything, being around other people. The last time I felt like this, I was a senior in high school, and I was going through a very rough time. Not a puppy-dog-love, teen-angst type of rough time. A seriously hard-core, life is a big pile of bullshit kind of rough time due to various situations. And I just couldn't sit still. I would sit in school and fidget, eyeing the clock, just dying to get the hell out of there. So, on a lot of occasions, that's exactly what I did. I ditched class all the time (sorry, mom, for the things you learn through this blog all these years later).

Sometimes I would ditch with other kids and engage in minor teenage hijinks, sharing cigarettes in the back of some boy's pickup truck or what have you. Other times, I left school for a reason, like when I would see Mr. S. was about to substitute for my class, and that disgusting little perv had already told my boyfriend and one of my ex-boyfriends that he had a thing for me, in very specific and descriptive terms. I remember getting caught for ditching by my dean, who was the hardest hard-core dean at the school, and she said, how is it that you missed 4 of X class, and only 1 of all your others? I still can't believe I had the balls, but I said, because Mr. S. was the sub, and every time I see him, I turn around and walk the other way and straight out the door. In one of the many moments that she saved my ass, my dean just looked at me and said fine. Just graduate from high school, Katy, and get out of here. That lady got me a job, watched my back in a thousand little ways. I owe her a serious debt of gratitude for my life turning out as well as it did.

Most of the time, though, I just ditched, by myself, because I felt like I was crawling out of my skin. I would just walk out the door and wander around. I wrote a poem about this once, about a time when the boy I would later date for many years found me walking by myself in the rain with no umbrella in the park during school hours. He had graduated, and was in college, and he asked me if he could interview me for his video project. I was shy, absurdly, since I wasn't really shy, and I agreed. He said he was asking everyone the same question and using the answers in a loop. The question was, what do you want to be when you grow up? And I paused a long time. I want to be happy, I said. Later he told me I was the best sound bite he ever recorded.

Could he have imagined how desperately I wanted to be happy right then? I felt that I was going nowhere, or more accurately that I was very smart and together and therefore should have been going somewhere but inevitably life was going to kick me in the ass and I would never make it. I felt this intangible sense of ennui, and it made me feel like someone else, and it was terrible. I wanted to be back in that place where you don't want to just escape from yourself, that place where you're content and life seems sweet. Of course, I did get out, and my life did change, I did walk away from whatever self I had been in high school and I did create a new one, and I can still remember how almost unbearably happy it made me when I realized my new life was really true.

I feel like that ridiculous teenager again right now. I pace around my office with the door closed. When I'm home, I wish I wasn't, and then I feel terribly guilty. I want to see people and talk to people but when I do, I am distracted by my thoughts and I can't concentrate. I would take walks or exercise all day long if I could, but I can't, and it would probably be a bad idea anyway. My breast hurts after lifting weights and it almost physically angers me, or my back hurts after spinning and I want to punch my fist through the wall. I feel like I'm always waiting, that I'd like to DO something, or go somewhere, but this is not high school anymore. I am doing what I always wanted to be doing, I've gone where I wanted to go. There's actually something to lose now, things really matter.

I would never walk away from my family, or even my job, or my house, or my friends. I know that, because I love all of those things. The life I have is a good one, one worth fighting for, so why do I just want to escape into the streets? Maybe it's because I miss the days when even the shit that mattered didn't matter that much. If I could change one thing about my youth, I would go back and ditch more often, and earlier in my high school career. I sure hope none of my young friends are reading this, and I hope my high school-teaching blog readers don't bust my chops for saying that. But I still contend that if I could get straight As in AP classes and not even show up, there was some lesson in there that I had already learned and I was actually doing ok, and the things that seemed so important just weren't.

Now I know that not just half, but maybe 80%, of life is just showing up, because that's what you need to do. Rules are important--they keep us sane, make us feel useful. And there's something to just valuing time spent doing a particular task. I mean, in college and grad school, I couldn't stand the thought of ditching. I was paying for that shit, so hell if I wasn't going to show up to class. And work is what enables you to live independently, so it's kind of important, and besides, hopefully you like what you do well enough. You can't ditch your family unless you're a moron, because they are what you always wanted. So what the fuck, I ask myself. What is my problem? And then I think, is this what they meant by coping with the new normal? Or is it something else, as Gabe suggested, is this all just a month-long preamble to next Tuesday?

Goddamn November 1, when I go in for my next mammogram and series of oncologist and surgeon appointments.

Maybe that's all it is. Maybe I will feel like Katy again come November 2. That's assuming I don't get bad news, of course. Don't say that, you're thinking to yourself. Well shit. The first time I had a mammogram, my entire life flipped upside down, so cut me some slack here. I'm not even a year and a half into this thing yet.

So I'm sure that's part of it, but I'm not sure that's all of it. I just feel like some kind of failure right now. I don't mean that literally--I know I'm not a failure in the large sense, but I feel like I'm failing at being Katy. I feel like I'm not living up to my potential as a worker, as a mother, as a friend. I don't even look like myself to myself. What's up with that crazy curly hair, who is that young boy in the picture there? Will the real Katy Jacob please stand up?

Maybe what I need is a good long project for my body. Sometimes I feel that I have two major conflicts in my life that cause me some degree of consternation. One is that I am living as an upper-middle-class parent, coming from a very different background than that, trying to figure out how to raise my kids not to be selfish and soft. The other is that I have this cerebral life, at work especially, when one of the most defining things about me is my relationship with my body. I think all day, while my body is telling me to just move all day. And just think--for all of those months I was doing cancer treatment and surgery, fighting through it. For almost a year prior to that I was nursing a baby, for the nine months prior to that I was pregnant, for a year before that I was trying to figure out why I couldn't get pregnant. That's years and years of tangible, physical goals. I can try to fill in the gaps, I can work my body to the bone to the extent that I can inside of my busy schedule, but it's not the same. Thinking to myself that I like what spinning has done for my booty or that I'm proud of my strong legs is not equal to nurturing and sustaining human life within myself or trying to cheat death. It's just not the same. It's not even in the same universe, in fact.

Oh don't worry, I'll get over it. I always do. I am not a fan of ennui, after all, not a fan of trying to find yourself, and I'm definitely not a fan of running away from anything. But my god when you think about this blink of an eye life, when you really think about it...well, you get restless. Last night we went to see Follies at the Shakespeare theater, a last minute outing since my mom was too sick to go, and we found it oddly depressing, though entertaining. Everyone was so bitter and felt that they had wasted their lives. How insane, I thought. Don't they know happiness is a choice? Most of life is not a choice, most of it is just shit that happens that you have to deal with, but happiness is, in fact, a choice. Why sing such a sad song? Gabe said later, god, I don't look forward to getting old. I looked at him in shock and said, well, I do. Consider the alternative. He tried to backtrack, but he knew what I was saying. That's what I do, more often than most 36 year olds could imagine. I consider the alternative. And then I get antsy, and maybe a little crazy. It won't last forever, I know, but right now, that's just how it is. And believe me, I am grateful to this blog for letting me get all that off my cute little perky scarred stupid pink cancer awareness chest. Now if only I could ditch work and race around the block a few times...

Day 499: Fight Like a Girl

Wow; writing that blog title was strange. Today is the 500th day of knowing I had cancer; I started writing this blog the day after my diagnosis. I guess the one thing that can be said about cancer is that it's often a slow-moving beast, even when you have a fast-growing, aggressive type like mine. Cancer was growing in me for an estimated three to five years, and there I was, nurturing other human beings in and from my body, using my body to the best of my ability, living life. Other diseases can do you in a lot quicker, I suppose. I'm thinking about this because we went to see Contagion last night, a movie I swore I wouldn't go see, because of the mass death of children, focus on disease and treatment, and the fact that if I'm going to pay $60 for a movie since I need to pay the babysitter it had better be the best damn movie of my life.

But we ended up there anyway last night, since it was too cold to go to see a high school football game, our dorky date of choice for a Friday night. Can I just give a shout out to high school football games? When you're actually in high school, maybe it doesn't seem so great (actually, it did, when I was there), but this is one of those things that is just stopped in time and is still fundamentally awesome, even if you don't know a soul on the field. It's still $3 for a hotdog dinner, it's still beautiful in the fall and you don't even have to talk to your date because you're watching the game, and there's a band and halftime entertainment and just the people watching alone, especially all of the insufferable posturing of teenage boys, is worth the price of admission. We went last weekend and we could've walked the few miles to the game, but we were testing out our new 13 year old next door neighbor babysitter so we didn't leave early enough. We had a blast. As another aside, here's a shout out to the neighbor kids too. I'm in the office looking down into my yard and there's the 11 year old neighbor who is the quarterback on his little football team yelling things like "go straight down the middle Augie!" and patiently watching as my two year old son and five year old daughter run around like fools having the time of their lives. And it was his idea no less! I love it.

So the 11 year old's 13 year old sister watched the kids and we got a quick beer and then went to see a show. I was so prepared to hate it and be supremely disturbed. Granted, it's rough at the beginning, but it's so clinical and everything happens so fast that you don't even have a chance to feel sad about any of the individuals. There's actually one scene that's funny. But damn, they title the scenes just like this blog, in number of days, and by Day 100 or so, millions of people are dead. And though it's not at all related, since obviously cancer isn't contagious, I have to give the movie credit for making me think about things a little differently.

I remember very clearly when I reached 100 days. I was so deep into chemo, and it was a week or so before my 35th birthday. I don't mean this as any kind of slight to people who have cancer and don't do chemo for whatever reason, but sometimes I feel like if I hadn't had to do chemo, cancer would've been just a blip in my life. My way of thinking about cancer is directly linked to my experience with chemo. Yes, the fear was there, the grief and disbelief, that was all there pre-chemo. The surgery was shocking for so many reasons, especially since I had to do it again. Not knowing my BRCA status, my stage, yes it was all a nightmare. Radiation was no walk in the park. But I knew the moment I was diagnosed that I would need to do extensive chemo, and damn. Chemo--it did things to me I didn't know were possible to have happen to a living person. I know that sounds dramatic, but for this woman whose body rejects most drugs, it's the truth.

And yet. How much better it must have been for me than for people who tried the first chemotherapies as human experiments 30, 40 years ago. This was back when no one knew if chemo could be effective, when the doses were extreme and the protocol was to do it for an entire year regardless of your stage or type of cancer. I kept thinking about this as I was watching this film full of great actors, some of them pretending to be doctors or scientists searching for a vaccine for this disease that killed people almost before they even knew they were sick. This thing moved so fast, you hardly had a prayer. I loved the juxtaposition of the conspiracy theorists in the movie, who are convinced that the government is in bed with the pharmaceutical companies; some believe the disease is made up, others believe the purported cures are fake. And everyone here knows how I railed against chemo, how close I was to quitting, and how I questioned whether or not I was trading an early stage cancer for some kind of unknown lethal side effects, other cancers or heart disease down the line, etc. I was definitely a chemo-hater. I still am. I'm still glad I didn't take the side effect drugs, that I did acupuncture instead.

But I'm also glad I did chemo. Now that I know what I know, I can see that I came back to myself after all of that. I feel just as young, fit and healthy as I ever did. What does this mean? My chemo nurse told me at one point that the chemo was affecting me so severely that I at least should take heart and know it was working. Now I look at it like this: My body took that. What a punishment, what a beating. And now here I am, almost like it never happened. Score! When one character in the movie last night was talking about how no one knows what the side effects will be of the vaccine, I thought, no one gives a shit. You would take it anyway given the carnage. You would rail against the vaccine, and against chemo, and you would do it anyway, because you would have some evidence that it worked for some people before you. How brave those people must have been in the face of all those unknowns! How glad I am for them, so that I could have this one chance to fight this triple negative beast.

Ah, triple negative. The status of my cancer that makes me wish the internet didn't exist. I found some blog today, written by an MD who specializes in breast cancer, which stated that the test that they do to determine hormone receptive status for breast cancer is wrong 10-20% of the time. It is only wrong in one direction, apparently: some significant minority of women who are deemed to have estrogen negative cancer are actually estrogen positive, and yet they are denied the drugs like tamoxifen that could save their lives because they are never re-tested.

Boy, did I not need to read that. On the one hand, I am so grateful I don't have to take any more drugs, so glad that I don't have to have artificially-induced menopause anymore. But it makes you think. What if that is the reason that recurrence is so much higher for triple negative women, that the mortality rate is higher? Is it because they're not triple negative at all, they were just denied the right treatment?

It could make me angry, it could make me paranoid, it could at least make me ask for another test. And yet, I mostly just think, well, in reality, they are doing their best. Don't get me wrong. There is a lot of B.S. in the medical industry in this country, a lot of politics and way too much money wrapped up in it. There is a lot of sexism, a lot of infantilizing of grown women, there's a lot of shit, that's for sure. But most of the time, I think individual doctors and nurses are doing their best, knowing that they know nothing, even when they act like know-it-alls.

Contagion brought me to this thoughtful place, but I have to admit that the reason I get to be contemplative about chemo is that I'm not in the middle of it anymore. Back at day 100 I just thought oh please God, not again. Don't do that to me again. I couldn't get reflective about it when it was knocking me on my ass. But who was I talking to? I was the one who handed my damn arm over every two weeks. I was the one who kept going back.

I don't know what precipitated the desire to write this blog, but for the need to acknowledge that I actually think science is cool, and that it has aided my life in some very real ways. I also think it's important that science is no science--there's a lot of guesswork, a lot of mistakes, and maybe those of us who need to rely on it at some point in our lives just need to accept that.

When I dabbled with being an animal rights activist in high school (that didn't last long--I'm way too people-focused, and everyone knows I'm no pet person), I just couldn't get behind the whole no-testing-medicine on animals debate. I was taking Depakote twice a day, after all, the drug that poisoned my liver and that simultaneously allowed me to live a normal, seizure-free, life. Even after all the testing that had been done before me, that drug was toxic as hell (I don't understand why drugs like Depakote are prescribed so widely today, for all kinds of conditions, when they have such potentially devastating consequences). Of course it couldn't have been tested on humans first. It's hard to admit that, but it's true. Animals died, people suffered in the early stages of prescription, but, for me, it was worth it. It worked for me, amazingly, and I blended into the world fairly effortlessly. Wouldn't you want that for yourself, for your children? You could say otherwise, until you're confronted with some other reality, and then you're willing to try anything.

Well, almost anything. I wasn't willing to enter a clinical trial and try Avastin, which had no expected benefit for someone with my type and stage of cancer, but had unbelievably disturbing potential side effects. (In a controversial decision, the $100k a year drug was taken off the FDA's approved list for breast cancer treatment very soon after I started chemo). But no one would argue that chemo isn't toxic, especially adriamicin and cytoxan. Taxol's not much better. If something can destroy the nerves in your body, obliterate your ovaries and rot your fingernails right out of their beds, it's no joke. But if it can kill your cancer too? Well, it's debatable for some, but as I sit here feeling entirely like a healthy and happy 36 year old woman, it sure seems worth it.

I never thought I would say that. While I was in it, it was so horrible. Life is like that though--as they say, this too shall pass. The hope is that you will be there to look back on it, that the experience will pass on, not you. So far that's happened to me. I never thought I would say that I hope I am truly triple negative either, but I do hope the test was right. If it was, I can say that I did everything I could do (except for the fact that I've been eating too much good food recently, and I swore I would avoid fatty things, but now that I can eat without vomiting or having hot flashes I am just loving it. 118 pounds here I come!). If somehow the test was wrong, well shit, it's not good for me to be getting these periods now is it? But at some point you have to stop second-guessing and just accept it. We're all doing our best with the information available to us at the time. You can't get lost in the possibilities.

Way back at the beginning of my cancer diagnosis, I got a call from the mother of my best friend from high school (my friend sent me this shirt that I'm wearing in the pics, and another Fuck cancer one, which isn't my style, but now that I'm out of treatment I think this one is cute). She had had breast cancer herself. We talked for a bit and she said one of the most human things anyone said to me at that time: "I know you'll do your best, Katy." Not, I know you'll beat this, I know you're a fighter, I know you'll live, I know you'll kick cancer's ass. Just, I know you'll do your best. That's the only thing you can do, and I do think I have done it. Maybe they'll know better by the time Lenny's grown. Maybe fewer women will get breast cancer at that point. Maybe I'll even be around to find out for myself! And if not? I did my best.

Maybe that's what it means to fight like a girl. Don't expect to win, don't get cocky about it, don't shove your victories in anyone's face, don't think you got there on your own, and don't thump your scarred-up chest too early. Fight like a girl, and see what you can learn from the game. Just do your best.

Day 494: The Kiss and the Story

For the last eleven days, I have had no inspiration whatsoever to write this blog. Of course, I didn't really write a blog on September 1 either; I just wrote that poem and posted it and decided that would suffice. I started thinking that maybe there isn't anything left to say, so I could forget about it for a while and just lounge on the couch and watch some football, (see what the kids learn from me? Some kids might mimic their mom by playing dress-up, mine sprawl all over the couch during the game), cook some comfort food, and do other run of the mill things.

So why am I sitting here on a Monday night, contemplating writing one of my deepest blogs yet, while watching the game? Well, in part because I can't imagine NOT watching Monday night football if it's on, no matter what, but mostly for two important reasons.

One is that yesterday was the tenth anniversary of September 11. I am not going to attempt to connect the events of this blog with the events of that day. As I will discuss later, I don't take myself that seriously. But I do read the newspaper, and I read the coverage of the memorial services in New York, Washington, and other places. There were so many moving moments, but the one that got me the most was something a teenage boy had written for his dad, which went something like this: "I still miss you, dad. I wish you had been around to teach me how to drive, how to ask a girl out on a date. I hope that my brother and I became the kind of young men you would have wanted us to be."

There really isn't anything for me to add to that, and most people reading this will know why that makes me tear up, beyond just the given feelings of empathy. The second thing that happened is that an old friend and colleague posted the following link on Facebook about Dignity Therapy for the Dying (this is what I love about facebook, that you get to see what other people are thinking about, out of context, and yet it makes perfect sense and you remember what you like about those people, even when they literally live halfway around the world): http://www.npr.org/2011/09/12/140336146/for-the-dying-a-chance-to-rewrite-life

All of a sudden, these two passages converged for me. What is so poignant about all of the memorial statements for those who died on September 11? Well, one of them is the way that loved ones talk about the sudden nature of all of those deaths and the lack of closure. News coverage mentions a woman and her 23 year old sister, a man's 29 year old son, someone's 67 year old mother. But those are their ages stopped in time ten years ago. The present-tense nature of the way these things are portrayed is a brutal reminder that those people did not have the chance to age another ten years, and no one saw it coming.

While everyone who dies is always eternally placed at the age they reached before death, I think it's even more significant when you die suddenly or when you are the subject of unexpected news. That child will always be 29, that life will always be cut short. We conflate this and bring it into our everyday lives. I know that one of the reasons that the friends of my childhood and my youth are so affected by the story of my cancer is that I am literally cemented in their minds as the age I was when they knew me or saw me last. I know that I would feel the same way.

Recently, my mom brought me a few of my formal dresses from high school, thinking I could fit into them. My favorite dress was a vintage, rose-colored dress with a beautiful back that I bought for $35 on the north side somewhere. I couldn't believe I could fit into it. Haven't I had kids? Didn't my hips finally expand when I was 20? Didn't I grow an inch and a half in college? (Alas, the only thing stopping the dress from fitting comfortably is that my damn rib cage grew. It even fit better on my behind, I didn't even have to suck in my stomach, but that ribcage must've expanded somewhere down the line). I know that if my boyfriend at the time or someone else from that era saw this picture of me wearing it now, they would think, that's Katy! 17 years old, in 1992. Because I will always be Katy, 17 years old, in 1992, to some people. That's just how it is. The things you are go back to the way you are remembered.

But it doesn't have to be so static, and that's what's neat about life. If your only sibling dies, are you an only child? You might think you are, but you will never be an only child, because you and so many other people have all the memories of you being a sibling. And if you are alive in the world, you get to age, and people who see you as stopped in time somewhere in your past just have to deal with the fact that that image isn't real. But if you don't get that last glimpse, that closure, if you don't get to see that body or bury that person, time and memory can play all kinds of tricks.

This contrasts so completely with the subject of the other piece, which focuses on the actions of people who know they are dying, who have time to prepare. Normally, when the cheesy question of "what would you do if you knew you only had x amount of time to live" arises, no one gives the option: "I would sit down and write about my life so that I could be remembered and the whole thing would seem real." And yet that is probably the only really true answer that a person could give to that question.

What do these things have to do with me? Well, nothing, really. I don't think I'm dying, not right now, anyway, but having cancer does bring you that much closer to death, or at least to thinking about death. And it makes people say things to you like, well, you might have cancer, but you know you could get hit by a bus tomorrow, we could all die at any time. And you want to smack those people, because of course you know that, and actually you were hit by a car, thank you, and you did have a gun at your head, and you almost died from an allergic reaction to penicillin as a baby, AND you had cancer, so clearly none of these things precludes the others. But the difference is that cancer gives you time to think, to reflect. When my grandmother knew that she had a breast lump when she was 75, she let it go for over a year. She was too terrified of cancer to get it checked out, thinking that having cancer meant that she would die. Her doctor sighed and told her, no Marthagene, it's not like a heart attack. Cancer won't kill you just like that. You have to suffer first.

She suffered more than she needed to, and she also lived another 11 years and died of other causes. But I digress. These two pieces of media converged in my convoluted mind and I thought, isn't that what I'm doing here, isn't that what this blog is about? I have enough presence of mind to realize that even if triple negative breast cancer ultimately does me in, I am alive now and will be for a while. I have time to tell my story. I have always admitted that I write this blog in part as a love letter to my kids, so that they could know me if they miss out on the real, corporeal me. I have also stated that I am doing it to make this real, so that I know that all of these things really happened, because I wrote about them and somehow that makes them true. If not for this blog, morbid insomnia might be some kind of off-color joke, that head-shaving experience might be some kind of dream Gabe and I had in the basement of our old house, and this relatively normal life wouldn't seem quite so marvelous.

I wrote it, so it must be true. I told the story, so it must have happened. Telling our stories brings us back to that basic aspect of ourselves, that somewhat desperate innocence. I knew I needed to write this blog after meeting our new young next door neighbor, a boy who is about ten, who spent at least an hour telling our entire family all kinds of stories, mostly small (life is so detailed at that age!). I realized how important it must be to him to get those stories out, even to us. It was also important to him that we believed him, as if he expected that we wouldn't believe the story he was telling us--about himself, and his life.

And it's important for your life to seem real, to be true. Every once in a while Gabe tells me that I got some detail wrong in this blog. A few times I will reflect back and say, yeah, I guess that happened at a different time of day, that event actually happened before the other one, not after. Other times I look at him and wonder what world he is living in, where he clearly experiences everything in a fog, because I know, I just know, that the way I remember it is true. And I'm sure he feels the same way.

Why do we have this need to tell our crazy stories? Why the task of dying, as the article reveals, that forces us to take stock and come to terms with what we've done with our lives? Are we narcissistic enough to think anyone cares? I remember when I was fresh out of an extremely painful breakup, I said to a friend that the last thing I wanted was to become one of his stories, or even many of his stories. And she looked at me thoughtfully and said, why not? I know it hurts now, but what is wrong with that? That's what happens to all of us, and it's an honor to be someone's story.

Don't I have insightful friends! Of course, she was right. It is equally important to be an actual part of someone's life, but if for some reason that isn't possible, how wonderful to think that someone thinks of you when they could think of so many other things. Perhaps being a part of the story is the whole point. Maybe we need to take ourselves much less seriously, think of ourselves as just part of the play, and try to entertain the audience.

But who am I to give advice? Here I was a week or so ago, entertaining some teenagers at my house, though I was sure they should have had something better to do, and I wanted to laugh at myself as I played at giving advice, as if I know anything at all. At one point I found myself telling them not to take themselves too seriously, not to think that everything matters so desperately. But of course it does when you're 18, right, and death is so far away! Your life is such an important thing, your decisions matter, your love is the only one. And yet, experience does teach you a few things.

I have very few regrets in my life, since I have always laid my cards out on the table, even when it was embarrassing, even when it made me look weak. And different things that I've survived or experienced have taught me not to take today too much to heart. In the middle of wondering why parents in Chicago need to spend a few extra work weeks of time figuring out where to send a child to first grade, I thought, does it really matter? When I was out of school for months after my car accident, I had a tutor for one hour a week--that's it. All we did was math. I liked other subjects more and asked her about reading and social studies and science and she said, you are smart, you can read, you won't forget those things. I pressed her, and she said something along the lines of "It's fourth grade. It doesn't really matter. You'll be fine." And when I went back to school it was as if I had never left.

As I was talking to these kids and thinking about how deeply you feel everything when you are young, I was brought back to the time right before I left for college. I had started dating someone, even though I knew I would leave and move 400 miles away a month or so later. One day we were at his parents' house lying in bed and he asked me if I wanted to go out. No, I said, this is nice, let's stay here. And he said, no--do you want to go out with me? Do you want to be my girlfriend?

In a moment typical of my own innate romanticism, I responded, sure, but I have to go out with this other guy first.

At the end of the day, I dated that guy I had known for a hot minute after high school for more than six years. But who was this other guy, the one I had to go out with first? Well, he was a boy I had always liked as a friend, and he seemed to like me. He played football, we were really different, but we had a great time together and had been lab partners in chemistry. One day I was walking down the street and he drove by, got out of the car, and asked me out on a date in front of all of his friends, and all of my friends, who were all different people. How could I say no? High school was over, none of it seemed to matter anymore.

So we went out, ate some ice cream, saw a movie, and he thought it was funny, not annoying when I talked through the film and yelled at the screen (hey, that's how I grew up). He tried to hold my hand in the theater and that's how I learned you can't squirm out of hand-holding without being a total bitch so you should just do it, no matter who it is. He's trying to hold your hand, not feel you up. You have to let him. Then we went back to his house and talked on the porch for a long time. He drove me home and leaned in to kiss me, and I pulled away, because I felt I would be cheating on the other boy. As soon as I did that, I regretted it, but I didn't know how to fix it. A few days later he moved to New York and I never saw or spoke to him again.

Oh, how serious I thought it was, how I thought it mattered if I kissed him. Of course it didn't. I could have slept with him, and what would that really have done, how would that have changed the course of things in all of our lives? The great part is that wasn't on the agenda at all. This was one of those moments you have in your life where this sweet kid is telling you, hey I'm moving away, and one of the last things I want to do before I go is kiss you, and then you take yourself so seriously you don't even do it. If only we could protect ourselves from ourselves at those moments. Because we can't, we give vague unsolicited advice to kids who look at each other like, this lady's crazy.

But maybe the moral of the story is that the boy in that story won, because here I am writing about him almost 20 years later. Maybe being a part of the story is better than the kiss, though I contend we could have had the kiss and the story, and that is what we should all be trying for at the end of the day. Telling the story is important, but so is living the story before you get to tell it.

Now, do I think that way because I am a woman and I relate to people through stories, not actions? While I scream out after witnessing an incredible 99 yard touchdown run, I am simultaneously thinking about the ways that gender plays out in our very real lives. I am remembering a story I heard from a friend, a guy who had been in a relationship with the same man for many years. He started talking about a trip he had just taken with his sister, and telling this hilarious story about how they suddenly were attacked by vampire bats. I was just about on the floor laughing, as was my other friend, when I realized he had never heard this story before this telling. And I thought, right there, that is the difference between men and women. You get attacked by some damn vampire bats, and you forget to tell your boyfriend? I would have had to build my own phone in the wild to make sure I could tell that one right away. It's so bizarre, how else would you know it was real?


That's what I guess this blog has brought to me, selfishly. What a gift to be able to recognize your life and what it is and what it means, not later, not in hindsight, but while it's happening. What a gift to yourself and to anyone else who is a part of that story. But you can't do that if you are too wrapped up in yourself and the way things are supposed to be. That's why we have conversations like this in my house (and we always have, way before cancer) while we're watching movies on Netflix: OK Gabe, if there's ever a civil war and you haven't seen me in two years and the world has gone to hell and you see Natalie Portman living by herself in a godforsaken cabin, just sleep with her. You will probably both be dead within the week, and I wouldn't hold it against you anyway. Or, ok Gabe, if you could save the entire human race but the only thing you have to do is kiss a woman who isn't me, you had better kiss that woman or I will make sure to kill you myself. In fact if you could save just one person, or even stop one person from getting hit by a car, by kissing someone else, promise me you would do it, ok?

And this circuitous train of thought brings me back to the early days of my cancer diagnosis, when I told Gabe I had something to tell him, and he gave me a crestfallen look before he steeled himself to hear it. I hadn't really thought about asking "permission" to have an ex take half-naked pictures of me once I found out I had breast cancer, but he suggested I find out if Gabe cared. Instead of asking, I just told him. When Gabe heard this he sounded really relieved and said, oh, that's not what I was expecting you to say. I thought you were going to say you had slept with someone else or that you wanted to sleep with someone else.

And then I got pissed, because first of all, did he really think that was at the top of my mind in the middle of my terror and sadness and grief? Really, I was thinking about sex? And then I got even more angry, thinking about this supposed hall pass I seemed to be getting, since it didn't even seem like he would have been mad, just a little hurt, if I had cheated. Like I was Cancer Girl. I said, what, do I have one foot so deep in the grave that the normal rules don't apply, I don't even need to be a normal wife anymore? And he stumbled, trying to explain. No, that's not it, of course I want you to myself, I don't think of you as dying, I just think that it's your life, and you need to do what you need to do, whatever will help you deal with this.

I was still angry, and confused, by this reaction. I told a good friend about it and she said, huh. Can you imagine being in that place? Imagining a betrayal from the person you love most in the world and immediately seeing past it, forgiving it, because you just want that person to feel better and you don't know how to help her? Think of how much pain you must be in, how much love you must have, to feel like that.

And while I was marveling at the existence of my super-intelligent and thoughtful friends, I understood exactly what she was saying. In part she was saying, you need to flip it, Katy. You need to realize that the story you just told me isn't about you at all, it's about Gabe. And I would take it further and say that by saying what she said, the story was really about her. Or the story was about the man who took the photos, who asked if Gabe would think it was weird that we were in our bedroom with the door closed and I was taking off my clothes in front of someone who used to be my lover while my husband played downstairs with the kids? All I could say is no, since I didn't have the heart to say, he thinks it's weird that I have cancer, that he might be raising those kids by himself, and this is really just some meaningless small potatoes in comparison. I couldn't say that because it wasn't meaningless to him. He wasn't living with my cancer every day, he was living in that awkward moment.

So for one of many times in my life I learned how to see myself as someone else saw me. And like everything does, that brings me back to gender politics and gender identity. Under the guise of empowerment, we spend a lot of time telling girls not to care about what other people think, not to see themselves how other people see them. And yet, I feel that we are taking away one of girls' greatest strengths when we do that. My mom used to say "men think they're beautiful." That means that many men have a hyper-inflated view of themselves and their attractiveness, their appeal. But it means something else too--they don't get that we don't necessarily see them that way. They just don't see it because they have never been taught to care what we think. But women, on the other hand, think about this all the time. We receive so many thoughtless comments (thoughtless in the real sense--even if they are positive) about how we look, our sex appeal, that we learn to objectify ourselves, to sit outside of ourselves and look in. However, too often, we are too hard on ourselves, and we make up flaws that no one else can see. In my mind there is a happy medium. Why can't we encourage everyone to see themselves the way that other people ACTUALLY see them? To put themselves in the other's shoes, and look back inward?

But again, here I am playing at giving advice. I can't say I'm very good at what I have just described. I have had my moments though. I was able to do that when I lost my hair. I thought, realistically I believe, that people will see me bald and think, that's kind of strange looking. Or they will think, she has cancer. A few people might think it looks nice. A few people might appreciate it. But no matter what the reaction, most importantly, those people will think whatever they will and then never think about it again, because I am a stranger and they don't give a shit about me or my bald head, so why should I make such a big deal out of it myself? The knowledge that my "otherness" wasn't so interesting in this wide world made it easier, just like it made it easier to be in a wheelchair, or to have such pretty hair that people you have never seen before and will never see again reach out to grab it and ask if it is real. Those people were seeing one perspective of me, they weren't seeing ME.

To see that, you would need to read this blog, or tell a story about me, and you would need to see me in the flesh or talk to me. Because if you have both, you can appreciate all of the unseen possibilities, you can think about that stranger who did a double take and then smiled and winked at you, and you can wonder if he would go back to the office and tell a little story about the cute bald woman he saw on the street. The wink made it real, the story made it last. And then you're outside of yourself, without ever having to leave. That's what completes the picture right? That's it--the kiss, and the story. You need both.

Day 413: Heavy Sigh

Most of the time, I am simply amazed at all the bullshit that happened over the last year. I say that because it's a rare moment indeed when the whole thing doesn't seem real, when my life is that cliche: "it must have been a bad dream." Life is just so normal most of the time that I am beginning to understand why that can throw so many cancer survivors for a loop. My kids are having meltdowns at the pool and I'm pulling them aside, alternating between being a hard ass and trying to be nurturing (not necessarily my forte), and they're whining about pizza and I look up at the sky to assess the possibility of a storm and I adjust the tie on my bikini top and then I see my radiation tattoo and I think, huh, look at that. There's a sign of that whole cancer thing, right there in front of me. I almost forgot.

Almost. I think what's actually happened is that I have blended into the world so well--I look relatively normal, I feel extremely healthy, and I'm not regularly terrified or grieving anymore--that when cancer hits me, it hits me hard, because I don't see it coming.

I don't realize how much it's with me, I guess. While I don't cry at regular intervals anymore, I do get emotional at times that don't make any sense, even to me. Recently I realized that I've been having strange sentimental feelings when I'm around teenagers--especially teenage boys. Now don't take that the wrong way--let me explain. A few weeks ago, I went to see a friend's daughter off to her prom, along with a huge number of her family and friends. I brought the kids, and besides Augie's inability to be quiet, forcing us to leave early, it was a fun occasion. I felt very happy for the girl and her family. But then, just the other day, I got choked up (not that anyone could see--I know how to be tough and keep it to myself) hearing one of the teenage boys who coaches the rowing team talk about his prom.

What the hell was my problem? Is this one of those harbingers of middle age (I don't think I'm middle aged yet, am I?), when you get nostalgic about your youth and try to live vicariously? Was I having some kind of flashback to my own prom (or proms--I went to two; I think I went to 8 formal dances in high school...)? A few weeks ago I went out with some old friends and we were talking about our senior prom. Every single one of us lamented the fact that at our school at the time, you were required to go in a boy-girl pair to prom. You couldn't pay half and go alone, and you couldn't just go with your girlfriends, even though we all said that's what we really wanted to do. You just want to wear the dress and dance, right? You're graduating, you don't have a boyfriend anymore, you just want to leave it all alone. Ironically, whatever the intention of the school at the time, that policy just basically put a bunch of kids in sexual situations that should have been avoided when we would have been happy to be PG about the whole thing.

But I still got the dress I wanted--my mom and I went to the Jessica McClintock store, because I had seen this dress somewhere else and knew I wanted it. I didn't have a date yet, but I didn't care. The dress cost $98, which seemed like such a fortune (that's actually $8 more than my wedding dress cost--11 years later). There we were on the mag mile, and I felt so out of place around all the snazzily dressed, north shore daughters. I will always remember how another girl who was there with her father monopolized one of the few dressing rooms forever, whining in a spoiled voice the whole time so her dad would do her bidding. I tried on one dress--the black and white one in the picture, in two different sizes. I was trying to decide which size to get, when the girl saw me talking to my mom and told me she wanted that dress. She actually demanded to try it on--while I was wearing it. She looked at the sizes, told me that I was skinny so I should buy the smaller one so she could have the other one that would fit her better. I quietly went back in the dressing room, looked at my mom, and said, I'm going to get this one, right? That's right, she said, taking the bigger size up to the counter. Take that, honey.

I also had a fun experience the day of the senior prom when the clueless white lady doing my hair--all I wanted was a french twist--completely screwed it up by actually teasing it. I had long red ringlets (as evidenced by this picture taken at my high school graduation--I'm also amazed at my prominent, 17-year old booty), and she TEASED my hair. WTF? She said to me: It's so curly, I don't know what to do with it, and she asked me to leave. I was crying, thinking my senior prom was ruined, when my best friend saw me on the street. She grabbed me and made her hairdresser cancel his appointment with his own mother so he could help me. He did this masterpiece with my hair--some crazy Victorian updo that held up with a few bobby-pins and three spritzes of hairspray the whole night. The entire salon took pictures and he put me in his portfolio. My eventual date was the guy I dated for most of my sophomore year, and I don't think I let him touch my hair even when we were in the hotel room afterwards. It was like a work of art, not to be defiled.

Oh the memories. But I digress. None of this is what was making me wistful. I actually wasn't thinking about my own prom or teenage years at all until I started writing this and those two memories came back to me, making me laugh at the absurdity. It was something else entirely, and I felt so stupid about the whole thing until I realized what it was.

The thing is, I really don't know any teenage boys. I know a bunch of girls--babysitters, friends' daughters and nieces, my cousin. No boys though. And I think teenagers as a whole are very neat. I'm sure some are a royal pain in the ass, and my memories of being a teenage girl remind me that teenage boys can be horrible, even predatory. But for the most part, they're not like that. These kids are finding out who they are, and they're excited about everything and the world seems so romantic as they have the whole of it before them. At the same time, many of them have lives that are like mine was, and they very much live in the real world and work hard and have tough times at home. But there's still that aspect of becoming yourself that is so apparent. It's especially neat to see boys who are respectful of women, who are funny and thoughtful and well-spoken. It makes me want to meet their parents and say, nice work.

Hearing about a boy going to prom, thinking about him taking pictures with his parents, just made my heart catch in my throat. It's ridiculous, but deep down, every time I see one of these young men, I get this sinking feeling that I will never see my own son grow up, that I won't know what he looks like when his cheeks thin out and he starts to style his insane curly red hair and he learns to be shy and nervous around all the older girls who love him so much right now due to his cuteness. I fear that I will be nothing but a face in a photograph to him, a story his father told him, the phantom author of this strange little blog. Lenny is old enough that I can imagine what she will look like, what her personality will be like, when she's a teenager. Lenny, at least, could remember me if I don't make it out of this mess. That doesn't make the idea of not seeing her grow up any easier, of course. But I'm just saying--what about my boy, the kid who gets insanely jealous every time Gabe gives me a kiss, who holds his arms up to me so I can grab him and hold him, who can't go to sleep if he knows I'm in the house unless I put him to bed? Will I ever know what it's like to look up at him because he's taller than me? Will I get to wait through the years when he's embarrassed to be around me and get to the point where he likes my company again?

Or will he always resent that mother who left him, who did the one thing Dr. Spock said a child could never forgive in a parent, who died?

I mean, look at these kids! I know I'm biased, but damn they're cute. And funny. And a little crazy. And smart as hell. I have such an ache thinking about what they'll be like when they're older. It's hard to imagine, especially with Augie. And I definitely can't picture it with me. Will I get to be middle-aged? Will I get to be old? What will I look like, how will I be? I feel like a little girl, asking these questions, and I realize that one of the lasting effects of cancer for me is this wish: Could I have a time machine that simultaneously stops time and speeds it up? Could I find a way to look into the future without trying to get there too soon?

Frigging breast cancer, man, turning this practical woman (someone once called me "ultra-sane"), this cynical and happy go lucky at the same time girl, into a sappy idiot come summertime. As I said at the beginning, heavy sigh.

And I say heavy sigh because this is buried in me, it's not something I dwell on at all, but it's there underneath all the rest of my mundane life all the same. Everything about me--almost--is back to "normal," if I ever qualified for that term. My energy, appetite, sexuality, cycles, it's all back. The hair isn't, not like it used to be, but that's half chemo's fault and half my fault as I refuse to let it grow out. There's got to be something to remind me that all is not as it was, right?

But something else is there. It's deep in the real sense of the word, it's down there at the core--that fear, that longing. I heard once that clinical depression is simply the removal of the defense mechanism that all humans have that allows them not to think too deeply about death. I am not depressed at all, and my defense mechanism seems to be working pretty damn well as I go about my business every day. But every once in a while it falls away, and I see it--what could have happened to me if I hadn't been so aggressive in taking care of that lump, what still might happen to me no matter what I've done to fight it, what will ultimately happen to me, and to everyone, someday.

I could get more sentimental than I am apt to do, but the wistfulness has passed and I am re-entering the land of the old Katy. I'm thinking about Gladiator, that insanely violent movie that I actually really enjoy. And no, I'm not thinking about myself as a warrior or making some ludicrous comparison between cancer and slavery. I'm not thinking about Russel Crowe's vision of heaven. I'm thinking about Djimon Hounsou's line as he contemplates death and seeing loved ones in the afterlife. After I get over my strange emotions, whenever they hit me, it's what I repeat to myself inside my head. We're all going that way, me included, and cancer doesn't change that, though it might speed up the process. We're all going.

"But not yet. Not yet."