Day 1,071: Today My Son is Four

“The prime purpose of being four is to enjoy being four; of secondary importance is to prepare for being five.” –Jim Trelease

My son turns four today. He is a boy now, no longer a baby, creeping deeper into a childhood that will lead to an adolescence that I still fear I will miss. Every once in a while, I can envision what he will look like when he’s older, or daydream about whether his nutty personality will translate into years of entertainment or danger. I don’t have as much reverse nostalgia as I had in 2011, when the sight of boys of just about any age could send me into an unexpected tailspin of grief, but it’s there sometimes all the same.

I am not one of those mothers who laments the time that has passed. I don’t get wistful over babies or clothes my kids have outgrown or memories of their past selves. Perhaps I would have never been that way, as I am not particularly sentimental. I’ll never know now whether that is the natural state of affairs or the change in perspective that cancer brought into my life. I am the mother who gets this aching feeling when I think about my children’s future selves, the various phases and ages that I can only imagine. I would love to speed up time and see them as adults, safe and secure in their grown up sense of themselves, but of course I don’t want to miss everything as it actually happens.

Reverse nostalgia; one of the side effects of cancer treatment that I didn’t see coming. I don’t know why I feel this more intensely with my son than with my daughter. Perhaps it’s because I am a woman, and I was once a girl, and therefore I can see her in myself and imagine her in ways that aren’t available to me with him. Or maybe it’s because his personality is so extreme and I don’t know how in the hell that’s going to play out over time.

Or, maybe it’s because he was just a baby, nursing happily on my cancerous breast, when our lives turned upside down, and I had no idea back then if I would see him reach kindergarten. Of course, I still don't know that, but the possibility is seeming more and more likely as time passes.

Four is an age that is often overlooked. People have few memories of four. Children aren’t enrolled in traditional school yet. Sometimes, preschool friendships survive into adulthood, but not often. Adults are prone to underestimating the feelings or experiences of kids that age. At four, you are too young to make big decisions, but too old to be immune from the ramifications of small decisions.

What can happen at four that really matters?

When I was four, my mother died. She bled to death internally after an operation. She was resuscitated and brought back to life. She was in a coma for weeks, in bed for months. My grandmother took care of us during that time. There was a huge snowstorm that year that effectively shut the city down, and I walked to preschool through snowdrifts taller than me anyway. When I was four, I stopped sucking my fingers. I could read and write and I kept stats at my brother’s little league games. When I was four, the only decade I had ever known turned over. When I was four, things happened that were important.

When my daughter was four, I was diagnosed with cancer. She spent almost her entire fourth year dealing with a mother in aggressive cancer treatment. And yet so many other things happened as well. I just asked her what she remembers about being four, and this conversation ensued:

L: Oh, I don’t know. That was such a long time ago.
A: But then, if she doesn’t remember, how will I know what to do when I’m 4?
L: It just comes naturally. You knew how to be three, didn’t you?

Ah yes, children don’t understand anything, do they?

My son is so little, and so old. He is so aggressive, and so empathetic. There is a storybook that we read where a bunch of animals have a sleepover, and the owl is left to play checkers alone because he is nocturnal. Augie always says that he would like to be in the story, so that he could play checkers with the owl, and he wouldn't be alone. He wants us to understand that he doesn't feel SORRY for the owl. He understands that the owl might be happy; he simply would like to offer to keep him company.

Augie is the one with rhythm, the one who can’t stop singing and who remembers every lyric to every song he's ever heard, who loves to get naked and ask inappropriate questions about alcohol, the one who looks jealous in a real, grownup way every time he sees his parents kiss. I’ve written about him before, but I often don’t know what to say. His personality is, in some ways, best-suited to short-form writing; Augie is like Twitter personified. He is just something else.

The things he says are just too much. Sitting at the breakfast table when he was 2 years old and could barely speak; he turns to me and says, 19 more years, mommy. 19 years until what? Until I can have a beer. When I asked him why he couldn't just listen, he said, You know I'm three, right mom? I'll listen when I'm six. This is the kid who, at two and a half, when asked what he would ask for from Santa for Christmas, got a really mischievous look in his eye and said: A Mountain. He's always asking about girls, always shaking his booty. Always giving us reason to just shake our heads.

Teenagers and young adults love this child. He steals the spotlight away from other kids, away from our daughter. He uses his cuteness to get his way, with other people anyway, since it doesn’t work for him at home. He is charming and manipulative and devious and willful. He’s funny. He loves animals; in fact he loves them enough to give up his mamas cold turkey so that he could watch the class hamster for the week of his birthday. Last Wednesday, I told him he couldn’t have the hamster come home with him if he didn’t give up his mamas at night. He looked at me and sighed. I know, mom. But not tonight. And he put one in his mouth and held onto the other one and would not budge. Not tonight. And then the next night, Thursday, the night before we were to bring her home, he gave his two mamas to his father, and he was done with them forever, just like that.

.

This one, where do his questions come from, how does he know what he knows? What’s behind those eyes? He will deliberately disobey me, make a mess, take his pants off, start singing and dancing, punch something and start making animal noises all within the span of three minutes. And then, he will pause. And he will ask me a question:

Mom, when we die, who is left alive?

And his father and I will raise our eyebrows, and his father will begin to talk about the memories that our loved ones have of us. I am a mother, so I say this: when I die, you will still be left alive.

And he will sigh, looking at us like we have obviously failed to understand the question.

No, I mean, when we die, who's left? What’s left?

And all we can do is look at each other, knowing that he knows what we know.

Happy four, kiddo. I’m so glad I was here to see it. Here’s to more years of you teaching me a thing or two.

Day 1,025: "Cancer Ennui" or Depression?

One of my all-time favorite google searches that led someone to this blog was "cancer ennui." That phrase is so apt! Going through this process brings a decent amount of absurdity to your life and makes you suddenly appreciate words like ennui and verklempt. And what is this process? Well, it's being really sick, dying even, and not having a clue. It's cutting, poisoning and burning what appears to be a totally healthy body because if you don't you will probably not live past 35. This process means dealing with the aftermath of those decisions. It's losing friends and feeling isolated. It's going back to feeling healthy only to live every day with the knowledge that you will never be "cancer free," "cured," or "in remission," because all that there is for your cancer is the notion of "no evidence of disease," or, more accurately, "you could still have cancer in there but right now we can't see it and if it has spread to a distant part of your body we cannot cure you and you will die sooner or later but probably sooner."

And, remarkably, most of us do pretty damn well living with that reality. I have felt sad, scared, angry, wistful, resentful, and a lot of other emotions as a result of cancer. It's fair to say, however, that it has never made me depressed.

That's surprising, actually. Cancer is depressing. It is especially depressing when you are at a stage in life that should be about just about anything other than cancer. But something being depressing is different from depression itself.

I know this, because I am going to admit to something here that I haven't admitted to anyone over the past year until last night. I am battling depression on and off, and it is related to cancer, but only tangentially. And it's really, really hard. It's especially hard because it's new to me. I have always been a fairly happy-go-lucky, content, even-keeled person. I have been called "ultra-sane." I get pissed off and cranky, but I don't get depressed.

I've written about the absurdity of going through puberty in my 30s as a result of coming out of chemo-induced menopause. I've written about how my new, short, perfectly regular cycles have brought with them a huge range of PMS symptoms that I've never had in my life, even though I got my first period at age 11. One of those things, I've figured out, is a regular depression related to hormone changes in my cycles.

For a few days every month, I experience this crushing feeling of hopelessness. I am not talking about being irritable or moody. I'm not talking about having cramps or being bloated and feeling fat. Suddenly, I am useless. I have no friends. I'm a terrible mother. I'm worthless at my job. I've never been good at anything I've ever tried to do, except maybe writing, but even that is questionable. My kids don't like me. My husband doesn't really love me, he just wants me for sex. I will lose my job and sit at home doing nothing but make the world a worse place to live in. The pain in my chest is mets to the sternum. I won't live to be 40. My life is over.

Notice I did not say that I FEEL these things. For those days, these things are absolutely true to me.

Even if I chart these feelings, use my intellect to try to discern a pattern, I cannot escape them or think that those feelings of worthlessness are feelings when I am in the middle of it. When those days happen, that is my truth.

I've recently realized that these days coincide with extra pain in my chest, extra feelings of breathlessness, and extra weight. On the worst day or days I weigh the most. Three or four days ago, I weighed 121 pounds. I know that is not heavy, but it just gave me one more reason to hate myself. I am not just worthless but ugly, fat and covered in stretch marks and scars and lopsided breasts and I'm just a fucking mess of a woman. Then, the next day, I weigh a pound less. The day after that, I pee about 72 times and lose another pound and a half. The next day--today--I weigh under 118 pounds and I feel, well, normal.

I don't feel normal because of my weight, or because all of that water that was crushing my lungs has left my body. I feel normal because I am no longer depressed. Now that I feel normal, I can see those previous feelings as the abnormal part of life, not the reality. I have some perspective that is just lost in those moments of loss.

My life is the same. The things that are disappointing and hard are the same. A hard week at work is a hard week of work. My mammogram still looms. All of these things are normal parts of living life, well, except for the cancer part. But even that is the same--I had cancer or could have cancer on days when I'm feeling normal and days when that alien being invades my body. The difference is in how I interpret those things.



I still worry about mets in my chest, but it doesn't seem like such a foregone conclusion that I tell my husband that I need to get a pet scan and a chest xray because I know it's bad news and we have to turn in the life insurance policy and I'm going to die. I don't feel such sadness when I see my kids that I am unable or unwilling to put them to bed at night. I don't cry while taking walks, while sitting in the house alone, I don't cry at all because goddamn it, Katy Jacob doesn't cry and that's one of the things that makes her Katy Jacob. If Gabe comes up to me and kisses the back of my neck when I'm washing the dishes, I smile or playfully swat him away. I don't say things to him like "you're only nice to me when you want to fuck me." I see my totally normal for a working mother social life as a good trade from the times when I was younger and still busy but mostly with people my age.

I don't have an intense desire to engage in what would be self-destructive behavior if I was a different person or in a different stage in life. During those days of depression, I could be talked into any bad habit out there. I want to get mind-numbingly drunk. I want to have sex, almost desperately, sadly. I want to have a cigarette, drive a car too fast, leave everyone I know and move to a cave in Mexico. I begin to understand why other people do drugs. I want to do anything that will make me feel something other than that hopelessness, anything that will enable me to see my body as something other than an aging and diseased bag of bones. I want to feel life in the face of the reality of death, which looms over me as surely as the feeling of metal at my temple or the coldness that coursed through my veins courtesy of the Red Devil.

In the confines of my life and my responsibilities, of course, I don't actually do these things--not most of them, anyway. I take walks away from the family, I work out too much or not enough. I have sex with my husband, who luckily is still the same guy and not someone I don't know or don't like, so even if I am not myself there are no negative consequences of my behavior. I have a few shots of tequila or a little more bourbon than I should but then I stop because I don't want to get a headache. I buy a new shirt that makes me feel like I'm not a fat disgusting pig.

All I can say is, thank God I didn't go through this when I was 14. I would have done so many things that I would have regretted.

I know I can't lose my shit because there are little kids depending on me. On those days, that is what keeps me in line, even though I believe that they hate me anyway. The knowledge that I will come out of that fog doesn't help, because that knowledge doesn't exist, not at the time, anyway.



And then, today happens. Or, really--last night happens. I go to a friend's house for her birthday and talk to people and don't drink anything. I come home and have a drink with my husband and I want to have sex with him because I'm attracted to him, not out of some existential sense of despair. I go work out, and I feel strong and fit. I help my daughter with her homework and laugh behind her back when she's losing her mind because she's too hungry and she doesn't realize that's her problem.

And I can know something about myself--that the feelings I had earlier were real as far as feelings go, but they were not real as far as reality goes. I tell myself that I will just have to gear up for next month, when this happens again. I remind my husband that I will be insane for a full week if not more before my mammogram. I hope that he has the wherewithal to deal with me at that time and at the times when I am deep into a depression but he knows better than to tell me it's hormones, so he says things like, hey Kate, I think you will feel better in a few days. I tell my mom that I'm good for nothing and she tells me I know that's not true, though I don't know it at the time, but I hope she keeps telling me that when the time comes. I don't think I need therapy, I cannot take hormone supplements and I will not take anti-depressants, so on the normal days--and most of them are normal days, at least in that "new normal" sense--I remind myself that THIS IS NORMAL, and that other stuff is not even me, it's a sickness of a different kind. It's just another thing I need to deal with, and I can do it, with a little bit of help from people who care about me.

It's not that all the things that bothered me were fake--especially the fear of cancer recurrence part. I mean, I probably should get that chest scan. Realistically, I SHOULD worry about being short of breath. And I know a lot of people deal with depression, short bouts and long term conditions, and this thing I deal with is relatively mild. But I want to make it clear that it is not depression that makes me think about having mets, or dying of cancer, or not living to see my kids grow up. It is whatever happened in my cell biology that made those maybe realities into very distinct possibilities. What depression does is bring that reality right in front of my face so that rather than dealing with the living parts of life, all I see is the suffering and death. So let me be the first to say that that suffering and death might happen to me, regardless of my attitude or cyclical depression. It happens to women with breast cancer every day. It's just an extra issue to deal with, and a very serious one, when depression hits.

It's the perspective of life that depression changes, not the life itself.

People say things to me, and I hear their words, and I don't interpret them as roundabout ways of telling me I'm a piece of shit who is doomed to nothing but an early grave. My spinning instructor puts her hand between my shoulder blades and then touches my shoulder on the cancer side and tells me that I look so strong and that I have amazing range of motion compared to what I used to have (a post cancer compliment if ever I've heard one!); my husband tells me I'm such a beautiful sexy woman; someone in senior management tells me I did an excellent job with that meeting; my friends say they miss me; a stranger compliments my shoes; my son says "I love you."



The difference is that this time, the fog has lifted. The difference is that this time, when I hear these words, I believe them.

Day 956: World Cancer Day

Today is World Cancer Day. I'm not entirely sure what that means for someone like me, except that it gives me an excuse to write something here finally, and I haven't felt like doing that for a while. According to the World Cancer Day website, part of the purpose of this day of awareness is to dispel myths about cancer. I feel like I've done a pretty good job of that over the years, as evidenced by the high level of discomfort that some have felt when reading these posts. However, I am intrigued by the four myths that have specifically been laid out for dispelling today:

Myth 1: Cancer is just a health issue
Myth 2: Cancer is a disease of the wealthy, elderly, and developed countries
Myth 3: Cancer is a death sentence
Myth 4: Cancer is my fate

I'd like to put a few quick words to the final three myths, and focus most of this post on the first one.

So, for myth #2, I would say that I never knew that cancer was considered to be a rich person's disease; I guess perhaps poor people, or those lacking health care, just don't live long enough with cancer to make it into the news? And clearly I am living proof that it is not a disease of the elderly. As for the developed countries part, there are so many issues that feed into such myths that I would rather focus on those than the myth itself: cancer rates and mortality statistics are directly skewed by screening techniques, available medication, and such things as the existence of hospitals and health records.

Now let me speak to myth #3: God, I hope not. But to everyone who has ever been told the words "you have cancer," it sure as hell feels like one. Even if you manage to beat some of the odds and live a very long life, you will always be a person who had cancer and survived, and that is different than being a person who never had cancer at all.

As for myth #4, I don't really know what to say. Cancer is my fate, in the sense that I had cancer, and I believe that fate is what happens. I hope this myth doesn't imply that I could have prevented cancer, by somehow being thinner or more active or happier or more awesome. Perhaps this is just to say that cancer isn't all of you, it doesn't define you, but that seems obvious to me. It's interesting to ponder the fact that people who are blessed with things often define themselves in part by those things, yet people who do not have things do not define themselves by their absence. Let's say you are healthy, or extremely fit--you take credit for it and call it a "lifestyle." Let's say you have money--you assume you deserve it, that you earned it. Let's say you are in love--you might feel that that relationship makes you special, carves a space for you in the world. But if none of those things or similar things are true, you are still yourself and still probably happy and most definitely not blaming yourself for it and crying in your beer.

That brings me to myth #1. Cancer is definitely not just a health issue. It's a community issue, a social issue, a political issue, a sexual issue, a friends and family issue, a workplace issue, an identity issue, an it's between you and your concept of God issue. Cancer is about money and power, gender and race, shit--it's about death and taxes and everything else. But cancer is not alone in this. The concept of the "new normal," which I feel was the subject of almost every single one of my 2012 posts whether I realized it or not, has been coined for cancer survivors, but we do not own it.

I have been uninterested in writing lately because I have been feeling very verklempt. (As an aside, I am so grateful for that word. Perfection personified!) I have been feeling as I did when I was a senior in high school, when so many things seemed behind me as well as in front of me and yet I couldn't see how to let the old ones go or move on into the waiting world. I felt like I was literally crawling out of my skin, and my angst was not a teen angst, but one based in a real and adult understanding of the hardness of the world. So many difficult things happened that year, and I wanted to get away from everything, but I didn't think I would be able to do that. So I would shake in my manic little body and when I couldn't take it anymore I would just leave--just walk the hell out of school, or get in my mom's car and drive somewhere and sit by myself in the dark.

And I feel like that now--but where can I go? I have clawed my way into the life that I wanted to have 20 years ago, no matter how imperfect it's been, and I don't want to leave it. I want more time to stay in it, in fact.

So what is responsible for this feeling that I have today and many other days? I started thinking about this when I went to see Gangster Squad with a few girlfriends, and in the middle of that almost humorously violent movie, I learned something about myself. The main character, a war veteran, talks about how he doesn't know how to do anything but fight, and he can't figure out how to be a normal person.

And I thought to myself, huh, me too.

A lot of people feel this way after going through cancer treatment. You are so focused on fighting the beast, and then you kind of "make it" but you don't know if that means anything, and now you are supposed to pretend like nothing ever happened and it's really hard. But for me, it's even more complex. I found out I had cancer when I was ALREADY deep into a focus on my own body--because I had spent the previous 20 months carrying and nursing a baby. Men cannot understand the extent to which you dedicate your body to your unborn child--not out of love or maternal instinct, but because you have no choice. Those babies are parasites. They are beautiful, but your body becomes a vessel for the sake of them whether you like it or not. Having a healthy baby becomes the paramount issue in your life. And then, if you nurse, so much of your daily routine revolves around feeding your baby that you don't even realize how your body parts and what they can do can define you and constitute work. And then of course there's everything else--the epilepsy, the near fatal car accident, the other medical issues that might seem relevant to someone else but aren't even worth mentioning for me. There's the people I've had to physically fight, the circumstances I've fought, the arguments I didn't know how to stop out of stubbornness or apathy or hell who knows what. I even picked a fighting career; I built my resume based on the idea that a few people could fight enormous institutions and social forces and somehow be successful. I've defined my life since age 6 as one that involved defying expectations and not backing down.

So what now?

What do I do now?

I'm not ashamed to admit that I have absolutely no idea. I feel a little bit lost sometimes. I have such a hard time with the small bullshit of life. I have a hard time dealing with false drama or fire drills or other nonsense. I am probably hard to be around because I think there's so much nonsense and bullshit and people think I don't care about them which isn't true. Now, let me be clear--I am not ACTUALLY unable to deal with any of these things. I am coping just fine and I know how to do and say the right things and play in the sandbox with the other kids. But on the inside, I just feel completely set apart from the things that most people care about, even my closest people. I have vivid dreams about eating. I think about exercising or sex hours in advance, planning what I will do and how I will do it. I hate being at work when there's snow outside because I could be playing in it. I walk for long periods of time by myself and if I don't I get jumpy. I look forward to my nightcap. I wish I could hold on to the moment right before falling asleep forever. One of my favorite ways to bond with my kids is to cook for them or play vaguely inappropriate music too loud so I can watch them dance.

Everything I think about life is about the body. I spend large chunks of time focused on the most basic aspects of being a live human being: walking, eating, seeing muscles move, forcing myself into a new breathing pattern, lovemaking, sleeping, and, incredibly, waking up.

But we don't live in a physical world. We live in a fairly virtual world. I have a thinking job. There's not a lot of manual labor that middle class people in the first world actually have to do. It's not even necessary to connect with people in the flesh. We talk about bodies as if they are commodities--we give them names and talk about how to get new ones and all the time I'm thinking THIS! This body that still works!

And I feel like a fish out of water, all the time. That's in part because of cancer. Cancer isolated me in the same way that it does other people--I lost some friends, people changed their interactions with me. It also brought me closer to other people, and gave me a voice, I suppose. Or at least it gave me a platform for the voice I already had. It brought me into another new normal and gave me survivor's guilt. But that feeling of separateness is not due to cancer alone.

I don't know how to change 30 years of fighting. I don't know how to be different. Maybe it's more than 30 years, maybe this isn't about experience at all but rather personality. Maybe the year old baby who somehow picked the lock on her dad's briefcase when she thought no one was looking was just destined to be this person going through life with her dukes up--I don't know. I really, really don't.

So I continue to do weird things. A short while ago, we had this crazy 70 degree day in late January. We were all warned that change was coming with a huge thunderstorm and precipitous drop in temperatures. That evening after work I decided to take a walk. I didn't take an umbrella. Gabe went to get the kids. It was drizzling the whole time I was walking, and then it started raining more seriously. I stopped into a deli to pick up some sandwiches for dinner and when I left, all hell had broken loose. I was soaked to the skin within half a block. It started to hail. People were running for cover. And I just kept walking, laughing. The bag of sandwiches was drenched. I could barely see through the rain. Later, I would have to literally peel my clothes off. There were enormous bolts of lightning and I could have called Gabe for a ride but I didn't.

When I got home, I asked if anyone wanted to put their rainboots on and go jump in puddles with me. The kids thought I was crazy, because they had been terrified that I would be struck by lightning or something, and Gabe was all, um no, I'm staying dry thanks. So I sighed and started getting undressed but not before he took this picture of me in my soaked clothes. I changed into something warm and fed my kids dinner, just like I should have done. But I wanted nothing more than to be outside in a freak weather scenario in winter feeling my body get wet and cold.

And to the person who honked at me because I jumped with both feet right into the river of water covering half of the street, what were you trying to say? Come on, you must know it too:

This hasn't happened before, and it might never happen again.

This--all of this.

Blink and you might miss it--that's one thing I do know.

Day 907: Power and Freedom

There is one thing that every cancer survivor I know wishes for at this time of year, or any time of year. And that is to have never had cancer.

Mind you, I did not say that we wish for cancer never to return, never to metastasize, though of course we wish those things too. But the dream is to return to things as they once were, which we all know is impossible. As I said to the kindly technician who prepared me for my sentinel node biopsy and asked me "is it all right if I do this?" as she moved through the motions of the procedure:

No, it's not all right. I want to go home!

You have to laugh. What else can you do, really?

While I will hail any advancement that might help those suffering from metastatic disease, while I cross my fingers in hope that someone could figure out what triple negative breast cancer really IS, so that it could be treated adequately in the future, the various "cures" and treatments that exist today or might exist in the future give me little but pause.

I acknowledge that cancer will probably always be with us, though I think we could do a much better job at figuring out how to prevent it. But there is so much pressure on us as survivors to tough it out, to change our habits, to win, to beat the beast. I just wish that the culture of cancer wasn't so closely linked to our misplaced obsession with individual power.

I believe that we experience cancer differently in the United States, in part due to this problem.

We are a nation that is so focused on its own culture of machismo and bravado that we don't even realize it; women engage in this as well. So, we find out we have cancer, and we fight ourselves, we war, we are suddenly, horribly responsible for saving our own skins through our willingness to go to war with cancer, which happens to be something that resides in our own bodies. Therefore, we war with ourselves.

We delude ourselves into thinking that we have power over this disease, that diseases are, in fact, things that only happen to "damaged" or "weak" people. We blame the stress of everyday life more than the various chemicals that we put into our bodies, knowingly or unknowingly, every single day. We do this, and we put the onus of survival on ourselves, while the power to wield environmental or cultural decisions lies with someone else, or something else, entirely.

We delude ourselves even in the ways that we talk about handling "side effects" of cancer treatment. While I experienced a multitude of very bizarre side effects to chemo, and, more importantly, other drugs prescribed to manage the side effects everyone assumed I would have, I take issue with the notion that the harbingers of cancer treatment--specifically, toxic chemotherapy--are "side effects." The big issues that most breast cancer survivors who take chemotherapy have are these: total baldness, extreme nausea and vomiting, destruction of the ovaries and the consequent onset of menopause, neuropathy, chemobrain, anorexia, mouth sores and other lesions, extreme dryness throughout the body, paralyzing fatigue, and high risk for subsequent cancers or heart disease.

These are not side effects that we can "manage" or "hide" with other medications. These are the intended responses of the chemotherapy we are given. And yes, I mean that. What, after all, is adriamicin? That drug affectionately called the red devil or the red death--what is it? Well, honestly, I don't know. I do know that when that syringe of what appears to be red koolaid is pushed into you via IV, you literally feel the coldness of death course through your veins. I never knew what that phrase meant, until I experienced it for myself.

And what is taxol? Taxol is a derivative of yew tree bark. It is insoluble to the body, so must be dissolved in a castor oil solution, causing severe allergic reactions in a substantial minority of patients (including me). If you were in the wild, and you ate this bark, you would die.

And what is cytoxan, the third chemo that I took, you might ask? Well, it is, quite simply...a form of mustard gas. Now do you understand the neuropathy and chemobrain that some people experience?

And finally, we come to radiation. What more is there to say? People worry about the radiation in a plane ride, the radiation present in a banana. Those of us who did radiation treatment for cancer essentially lived in a Chernobyl-esque environment, one that "plumped up our breasts," because it fundamentally altered the DNA of the cells it touched.

And so we must acknowledge that the horrible "side effects" of such treatments are not really side effects at all, but expected results--these are cell-killers, after all. Some of us were unlucky, and others lucky, in the extent to which we experienced these effects and whether or not they were long-lasting. Sleep, diet, and exercise do wonders for making us feel better, but they can at times be weak forces against the powerful poison that some of us were powerless to avoid if we wanted to live.

We did not choose to do this to ourselves, and these weapons of war (literally, if you think of the comparisons between chemical weapons and chemotherapy) can leave us feeling eternally conflicted for what we have done to ourselves. I have asked myself many times, dear Lord, what have I done? Only to remind myself THAT I DID NOT DO THIS. I AM NOT AT FAULT FOR THIS.

Cancer is not alone in the way that we attempt to "empower" victims by telling them that they control their own sorry fates. We do this to other victims as well. In fact, we have tried, and mostly succeeded, to convince people that being a victim is bad, because it means you are weak and worthless. So we tell victims of sexual assault (which I would contend should just be called rape--there is no sex in rape, only violence) through our continued focus on how women, and even children, can learn to be "badasses" that they are ultimately responsible for the situation that has befallen them. We blame women for their dress, their sexual history, their decisions to be in a certain place at a certain time, rather than question those who believe they have the right to other people's bodies. We condone the culture of rape, and claim that the "power" to prevent it lies with the individual who experiences it.

In one situation that I experienced when I was very young, that I escaped before being raped but which changed me forever, I was left with this haunting thought. I knew, I just knew, that this would not have happened to me if I was a different girl, if I had just wanted to dance and drink and flirt with the boys like everyone else. I thought that this happened to me because I was the "wrong kind of girl," and someone was punishing me for it. And what kind of girl was that, you ask?

I was the only girl at the party who wanted to watch the basketball game on TV.

I have spent more than 20 years holding steadfast to that girl, because the problem was never her--not ever.

After all, what if someone is actually more powerful than you? Just by nature of being bigger, and stronger? Does that mean you are weak?

Or, that he shouldn't have used his power to commit an act of violence?

We do this, and we do not even seem to realize we are doing it. We try and convince ourselves that there is some universe in which it makes sense for kindergarten teachers, who are mostly a friendly, nonviolent sort, to carry semi-automatic weapons. We plan to teach five year olds what to do if their classroom is transformed into a warzone. We turn every individual into the one who should protect himself or herself, and we fail to focus on the collective responsibility that we all have to protect one another. We avoid policies that could bring about real, meaningful change, because we have created a culture where everyone is out for himself.

So it is with cancer. I contend that it is not for me to be brave, or beautiful, or strong. It is for us as a society to try to make strides towards eradicating a disease that will afflict fully 50% of the population before death. It is for us as a society to hold each other up in times of sickness, to allow ourselves to accept some level of weakness and to let others help us.

Every time we personalize a social issue, we move away from any useful solution. We take large, complex problems, and concoct for them fantastical, even juvenile, solutions. Perhaps I am a superhuman, capable of protecting myself and my family from every possible scourge: famine, illness, violence, poverty.

Or, perhaps I am not. Perhaps none of us are. Perhaps true power, true freedom even, lies in the ability to not have to fight, to live out the promise of our lives unscathed because we have ensured a civil society that embraces a real sense of community and collective mores.

If there is one thing that has made me feel free in this life, that has made me feel powerful, it has been the ability to walk away. To walk away from my own convulsions, to walk when I once could not, to run from people who intended to hurt me, to sacrifice worldly possessions in exchange for a safe ride home, to live for two years without poisoning myself, to walk, or run, or crawl, back into the normalcy and complacency of my life. I might be doomed to a life inside this getaway car, always looking over my shoulder, but I am not the one who committed the crime.

If we must be "empowered," we have already lost half the battle. Would that we would not need such power in the first place.

Day 890: Magical Thinking

A few days ago, I wrote a post about my strong belief that Gilda's Club should not change its name. I decided not to make that a KatyDidCancer post, because to me, it was broader than that. When Radner spoke of "Delicious Ambiguity," she admitted that she had wanted to continue to believe in "magical thinking," even through her cancer diagnosis, but at some point she just couldn't anymore.

Doesn't that happen to all of us at some point? Of course it does. Part of what makes childhood unique is the strong power of magical thinking. Make-believe games, imaginary friends, playing more with the box than the toy inside it, and the ways that children continuously remake themselves, are all ways that kids learn to navigate the world.

I think this is really important. My kids go or did go to Montessori school for early childhood education, but I don't believe in the Montessori philosophy that says that children should only play "real" games, lest they not be able to tell the difference between fantasy and reality. I don't believe in this because here I am, 37 years old, and I want someone to tell me:

What the hell is the difference between fantasy and reality?

Truth is often stranger than fiction. Take it from me. I've learned that the hard way.

Around this time of year, there are millions of parents who navigate ways to try to keep the idea and the magic of Christmas alive for their kids. We aren't religious here, but we are serious about our Santa. The kids even believe in Santa Mouse--he stuffs the stockings and you have to leave him cheese. Trust me, it's a book--and a classic one, at that.

Augie is three and a half and believes in Santa whole-heartedly. I've wondered about Lenny, though. Last year on Christmas eve, we showed her the Norad tracker online. Santa was in Estonia, on his way to Helsinki. I told Lenny how long the tracker said it would take him to get from the one to the other, and then asked her when Santa should arrive in Chicago. Lenny is a geography nerd. There she was, 5 years old, and she knew all about Estonia and Helsinki. Then, she put her fingers on the computer, did a little calculation in her mind, included the time zone change, and guessed to within 45 minutes of the tracker's estimate.

How can a kid like that believe in Santa? Her logical mind is telling her one thing, but her magical thinking heart was telling her another.

So you know we really screwed up when the tooth fairy skipped over this house on Lenny's third lost tooth. We had to make up a whole story about the weather being the reason she couldn't make it. I know she wanted to believe us. And I know that she didn't, but she played along anyway.

I played along too, most of my childhood. I tried to pray, came to the conclusion I was talking to myself. I listened for hooves on the roof on December 24 for as long as I could, until I fell asleep. I ignored my parents' handwriting on all the notes from various magical beings. I cried when my brother told me there was no Santa, even though I knew that already.

Having children proves to you that there are very few differences between being a child and being an adult. Even children wish they could believe in things that seem impossible. As an adult, you take great joy in the magic. I swear my mom was still playing Santa when I was 20. We tried to keep the magic in the season even when the season proved to be ridiculous, like the last year we had a real Christmas tree, when I was maybe 17 and my brother 20. We bought the tree, they wrapped it in that stuff, put it on the car. My mom drove us back to the house we grew up in, which would sell to another family the next year when my mom moved into a three room apartment, and the whole drive we wondered what that strange chirping sound was. We got home to find a bird had been dying in the wrapping the whole time.

My brother had to vacuum the dead bird out of the tree. The next year, we bought a small fake tree, and that is the tree that stands in my house to this day.

Oh, how life steps in, even when the visions of sugarplums are dancing.

But the mind, or maybe it's the heart, is stronger than reality sometimes. I don't think that changes with adulthood--it just shifts. It is that heart, that mind over matter, that allows us to keep plugging along, laughing, loving, working, while death sits tapping at our shoulders.

Having children just makes this clearer.

Yesterday, Lenny pulled Gabe aside and whispered in his ear. There's really nothing for me to add to this.

Daddy, I want to tell you something. I just realized that I can believe in things that I can't see. Last year, I thought that Santa Claus was just someone in our family who left presents under the tree when everyone else was asleep. But now I realize that's not true.

Because who would want to stay up until midnight?

Day 886: S*** Moms with Cancer Say, Part Two

There's this pervasive rhetoric out there that cancer makes you some kind of uber-parent. After cancer, you are apparently supposed to be infused with a Zen-like understanding of the universe that enables you to calmly and rationally deal with any parental situation put before you. You are supposed to change dramatically, and yet not allow it to be OBVIOUS that you have changed, or why. So you aren't supposed to bring up the Big C at the same time that your life is supposed to be changed for the better because of it.

That's a bunch of crap.

I've said it before--I'm an impatient person. It's entirely possible that cancer has made me less patient, not more, but we will never know, will we? Because this is the only Katy that there is. I started thinking about how we might have some slightly altered conversations at my house the other day, when I got pissed at Gabe for forgetting to feed the kids any lunch on Thanksgiving. I was cooking for two days, and then I went for a walk, hoping they would have had a snack by the time I got back. I even reminded him about it before I left. But no, they were all too busy playing outside. I know I should have been basking in the post-cancer bliss of appreciation for the beautiful weather, but instead, I was annoyed by how hungry they were just an hour before Thanksgiving dinner. So I said this:

I have been cooking for two days. You are NOT eating right now. You will just have to be hungry until dinner. OK, fine, you can have a banana--but that's IT. Your DAD was supposed to REMEMBER to feed you. (Turns to guilty party). Jesus Christ honey, how can you forget to feed your own children? I mean, WHAT WOULD YOU DO IF I WAS DEAD?!

After the look Gabe gave me for that one, I thought it would be worth sharing some other gems as an addendum to the first installment of this, written almost a year ago:

What do you MEAN you don't like this dinner? Do you understand that this food is absolutely DELICIOUS (shoveling food into mouth, so glad to be able to taste it and keep it down)? It isn't a requirement that food taste good you know! YOU STILL HAVE TO EAT IT!

So, do you think I should wear my hair for Halloween, like as part of my costume? No? Well what should we do with it? Do you want to play with it? No? How about one of the other wigs then? The normal ones or the green one or the purple one? Maybe one of your dolls could wear them.

You're awake because you're having nightmares about a dog getting bitten by tics? Well, you know, that's not so bad. I'm sure the dog will live. We all need to sleep now.

You injured yourself? Are you bleeding? I'm sure you'll live.

So you have injured yourself and it's just bleeding a little? OK let me get a bandaid. You'll live. Tell your dad if it gets worse, because I'm going to the gym.

Lenny, have you lost weight? You don't have any weight to lose! Take it from me! You will feel weaker, not better, if you get smaller. Here's some butter to eat and also some two pound weights. Start lifting!

No, I don't remember when the dinosaurs died. None of us remembers that. No, we were not zero, we were nothing. Humans didn't exist. Do you want some raisins?

Yes, your dad and I are going out two nights in a row. We still like each other and life's short.

No honey, I don't really remember when you first learned to walk.

I'm going to the doctor. Jeez, kiddo, it's only a checkup. DON'T WORRY ABOUT IT!

Yes, Daddy is having surgery. What's the big deal? Lots of people have surgery. Why do you need to know why? Wait, why are you crying? Oh shit it's just surgery so we can't have any more kids! There's nothing wrong with him! Why is he doing the surgery and not me? Well, I've done enough.

Look whatever your name is, you had better listen to me!

Lenny, if you don't take care of your hair, we are cutting it super short. These tangles are ridiculous. Augie, you will just have to put up with people raving about your curls all the time. You both know something they don't know: IT'S JUST HAIR.

Don't fake cough at me. Pretending to be sick isn't funny.

So I see that your favorite stuffed animal right now is a demon with a pitchfork. What's his name? Little devil? Cute.

I know it's a school night, but we are going to go to dinner and go mini-golfing, because tomorrow is my birthday and I'm really happy to turn 37. You won't get enough sleep but I don't really see how that's relevant in the grand scheme of things.

Yes, I see that your brother has grabbed onto your leg and won't let go, and you look pretty annoyed about it. Go ahead, hit him a little. You told him to stop at least five times, and you're pretty strong. Use it while you've got it.

Are you really going to keep using that pacifier? You know what, fine. I'm not going to stop you.

Yes, everyone dies. Hopefully not any of us anytime soon.

And then there are all the silences, the times when I don't say anything, because my kids ask me about what they will be when they grow up or where they will live or they talk about getting married, not even really knowing what that means, and I just slightly turn away. Still wondering whether I'll get to see any of that. Still a sucker for Augie's go-to strategy for getting out of trouble, even when he breaks a vase that held branches of the pussy willow tree from my dead grandmother's garden and it came down to me to discipline him. He sobbed, asking, "Is it going to be all right?" And I said No, the vase won't be all right. It's broken forever and you need to apologize and listen when we tell you not to do things, like throw stuff in the house. You might need to use some money in your piggy bank to help replace it.

And then he looked at me with those big brown eyes, asked, "kiss?" and grabbed me by the back of the neck and swooped in like he always does, something I'm sure he learned in one of his past lives, and because he believes that this fixes anything and I don't really believe I'm in a position to argue, I responded: And yeah, in general? It's going to be all right..

This photo was taken 10 days before my cancer diagnosis.

Day 881: On Thanks

This is the third year that I have felt the peculiar pressure to try to prove to the world that I am thankful for being here, to make it clear that I feel grateful for every breath in a way that others do not. It is an odd bit of cancer-related malaise, this assumption that I of all people must be happy to be here in the world.

It is odd, because it is false.

It is not false because I am not happy, or thankful, or relieved. I wrote what I needed to write about how it feels to contemplate Thanksgiving post-cancer last year, and someone once said that what was once written well need not be written again. No, it is false because it is ridiculous to assume that I, and others who are experiencing or coming out of difficult times, didn't feel gratitude before my suffering commenced.

I am bothered by our focus on thanks at Thanksgiving. It reminds me of our focus on "tolerance" when we are reminded to contemplate the "other." Each carries within it an expectation of privilege, a collective hand across the brow that says "whew! glad I'm not that other guy!" After all, we are encouraged to give thanks for our plenty, as if it would be appalling not to have it. We are encouraged to remember others who are less fortunate, as if they are somehow separate from us. This is not so different from being told to tolerate the existence of other people in the world, as if the reminder that not everyone's life looks like ours is simply a bothersome inconvenience.

Our culture is obsessed with the idea that we can all lead "purposeful" lives, doing what we want, bestowing our gifts on the world. If a person is adept at something, such as writing, she is told that she has a gift that she is obligated to share. She might disagree, not because she wants to keep this skill to herself, but because she is not at all convinced that her place in the world is important per se. She is fairly convinced that no great chasm will exist in the universe when her time is up, and she does not believe that we were placed here on earth to be our fullest selves. In fact, she is not religious, and does not believe that we were placed here at all, or that any one of us has a specific destiny to fulfill.

So what is the purpose of all of this, in this context? How should we place our relative plenty in the face of so much nothingness?

Perhaps we could start by recognizing the illusion of choice. We live in a society that believes in its own myths, one that puts forth the idea that life is but a series of choices that are open and equal to all people, and we only have to have the moxie and strength and determination to make the right ones. But that is an assumption so steeped in privilege that it doesn't even recognize itself as privilege.

When a person feels she does not have a lot of choices, that does not mean that she is weak, or not trying hard enough, or that she has a deficient personality. Choice is relative. A lumpectomy is not a preferred choice over a mastectomy, for example; one wishes only for the choice of going home, never having had cancer at all. One is not truly "choosing" one form of toxic chemotherapy over another. And if a woman finds herself in a situation where she is not particularly "fulfilled," such as in a job that has lost its luster, that is not because she is making a cowardly choice. It is, perhaps, because she recognizes that life isn't always about fulfillment of desire, but rather fulfillment of responsibility. She can see the people who have lost the ability to choose how to spend their days due to their experience with illness or discrimination or plain bad luck, and she can realize that sometimes, life is what you have ended up with, not what you had planned.

If we can choose, we should realize why we are in a position to do that. Our choices and the things we have to be thankful for are but an accident of history; they can change or be taken away at any time. This makes me think about how I used to argue with some of the truly dedicated students studying urban planning with me in graduate school, who were convinced that things such as big box retailers and strip malls were destroying the fabric of our lives. As they made erudite arguments about why local, mom and pop stores should be encouraged in lower income areas, I would ask this:

Why do poor people always have to choose between having something that is less and having nothing?

In middle class communities, folks do not have to choose between going to a discount pharmacy such as Walgreens to pick up their medications and going to an expensive, quirky store managed by local residents that throws itself back to the 1950s with more than a hint of ironic nostalgia. Rich people do not have to go to community meetings and public hearings in order to have the option not to purchase milk for their children at a high markup in a liquor store. When there are real choices, we can demand the best. That does not mean that others shouldn't be able to demand at least something.

While some people sit high on the mountain discussing the rain, people in the valley already know that it is flooding.

What the people on the mountain don't necessarily understand is that they will, inevitably, live in the valley one day themselves. That is true for all of us, whether we admit it or not. It is what we do with our knowledge of this that provides the possibility for moments of real grace.

This year, during our annual time of Thanksgiving, my husband made this remark to me: We can't all be so lucky, Kate. Not everyone has found that fountain of youth, as you have. I laughed and said that half of the fountain of youth is good DNA. Silently, I told myself this: The other half lies in knowing that you will die.

That is this year. Last year, in my Thanksgiving post, I said this: Maybe we all should be thankful to have suffered, and survived.

That's the only absolute truth that I really understand. It is through suffering that we learn empathy, that we come closer to the collective understanding of God, that we can be grateful for the shoes we walk in every day. So I would say that we were not put on this earth to fulfill ourselves, but rather to make improvements. We can only recognize what needs to be changed if we have suffered and lost ourselves.

And so, this year, I will not focus on being thankful. I will, rather, be mindful. Mindful of all that I have, of all that I have lost, of the opportunities and challenges that await me, and, most importantly, of the extreme specificity of living in this body, in this time and place, at this point in history, and of what that means for how my life is lived as opposed to how others experience the world.

All of these deeper thoughts bring me, at last, to this: Today, while I was searching for all of my Thanksgiving recipes, I came across a poem that I had written about 10 years ago. Amongst all of the coupons, recipes, menus and random pieces of paper in a timeworn binder, sat this poem that is about, of all things, a radio station I listened to as a teenager that advertised itself as "all rap, all the time." You could only hear this station if you happened to be in certain areas--blocks, really--on the west side of Chicago. This might seem strange to you, but it is a fitting ending to me:

AM 950

It’s what we listened to
before fancy car stereos
or air conditioning
in the Delta 88 with electric seats
in the sweltering summer
Apple Beeper spots
scratchy staccato
no reception under the viaducts
the dial stuck in place
and the antenna barely hanging on

They say there are possibilities
everywhere
that the world is an unopened gift
but for once
it was true that
you had to be there

Specifically

In that lone car on a straight stretch
of broken Midwestern pavement
so that ten years later
I could recover
the blip in time that cemented us
into that insignificant moment
and I could say to you,
Here, we were here,
it was real,
remember?

Day 847: 2 Years Post-Chemo

Two years ago, I did my last chemo treatment.

Hopefully.

The end of chemo is a milestone that cannot be underestimated. For someone like me, who had such an absurd and difficult bout of suffering with chemo, the thought of doing it again is terrifying. The thought of that last day, that last treatment, was one of the only things that kept me going as my body experienced new and bizarre side effects and made me feel alien to myself. I had to continue to tell myself that mid-October would come, and I would be DONE. I had to tell myself that that would be it, that I would not have to do this again, no matter how unlikely that might have seemed at the time due to the aggressive nature of my specific disease.

Here's the thing. For many cancers, there are a variety of treatments, even if the dreaded recurrence happens. With breast cancer of all kinds, a stage IV diagnosis means a few things. One, it means about a 15% chance of surviving 5 years. Two, it means that for the rest of the time that you live--your entire life--you will be on chemo. For TNBC, it means that the rest of your life will be spent doing chemotherapy regimens that were really developed for other types of breast cancer, and that your chances for that five years are essentially zero; though that reality might be changing. But the bottom line is that Stage IV breast cancer means chemo forever.

Think about that. This fact is simply not true for many other cancers. There are women--the real warriors, a word I don't like to use when talking about breast cancer--who live with chemo for years and years. Many of the side effects for chemo for advanced breast cancer might not be readily apparent; women might hang onto their hair, for example, but their bodies take one hell of a beating.

I don't know how they do it. I have nothing but admiration and respect for people who do this, and I don't say that with any kind of pity or paternalism.

I can say that I don't know how they do it, but that is kind of a lie. I know that they do it with resignation and hope, two things that we think are mutually exclusive but are actually very closely linked. And moreover, I DO know WHY they do it.

You do these things, because no one knows what else to do for you. You do these things because your desire to live is stronger than your desire to feel what "normal" people consider to be "healthy." You change your definitions, your mindset, and your day to day reality and you put up with things that would bring other people to their knees. You do this because you don't have a whole hell of a lot of options.

Cancer is hard. No one feels the same after a cancer diagnosis. Surgery is rough, painful, disfiguring. Radiation is no walk in the park. Maintenance medications can make you feel like a zombie. But in my heart, I find it hard to relate to people who have had cancer and didn't have to go through chemo. I envy those with chemo regimens that are on the "lighter" side, and those who didn't have a tough time with it. It's stupid, and it's irrational, but it's real--these feelings are real. I know the fears that all cancer survivors experience, I appreciate their perspective, and I have more in common with them on this one subject, this one way of walking through the world, than I do with most other people I know. I can see the look in their eyes and glimpse with them that vision of the future they aren't sure they are going to have, even one year later, just as I can see it in my own eyes that are reflected back into the camera lens almost exactly a year after chemo right here:

But my experience with cancer was so linked to my experience with chemo that I cannot separate the two. Chemo took my hair; it made me sick in ways that I didn't know were possible when cancer never made me feel sick at all. Chemo threw me into menopause, made me weak, made me lose weight. Chemo put me into the hospital with a temporary heart condition. Chemo made it impossible for me to sweat, sleep, or cry. Chemo gave me hemorrhoids, bone pain, stomach pains so intense I could barely walk. Chemo made it obvious that I had cancer; it brought me closer to death than cancer ever had. I dreaded each treatment, and yet felt absolutely devastated when I was sent home at my sixth treatment because my numbers were too low. Chemo taught me, or rather reminded me, that not everything in life is a question of mind over matter. Sometimes, matter matters. All your mind can do is force you to keep going, to hand your arm over, to stubbornly do things as you did them before, to walk around bald and glare at those who might shun you or pity you or even compliment you.

Chemo taught me to wait, to wish for time to speed up even as I clung to every day with an intense fear that I would not have many others to cling to; chemo gave me a goal, which was to make it until October 13, which turned into October 18 due to the WBC issue. I still had months of treatment left after chemo, but I was hardly even concerned with that, as I felt I had jumped the biggest hurdle.

My chemo nurse told me on that last day: You did it. This is never easy. This is very, very hard for everyone. I can tell you that after years of doing this, this regimen did things to you that I have never seen before, and I know how much you wanted to quit. But you did it. It was a lot of suffering for a short period of time so that you can live a lot longer. I don't think you will have to do this again. Go have some champagne. Visit me sometime. And...good luck.

Amen, sister.

Here's to hoping that October 18 will always mean the same thing to me: the last day I poisoned myself with toxic chemotherapy. I don't ever want it to mean the last time, as in the time before this one. Chemo for stage one cancer lasted for four months. Chemo for stage four cancer would last for forever. So, I celebrate this anniversary just two days after I celebrate my wedding anniversary, and I can tell myself, my husband, and my family this:

I am hoping for many more years to see how we've all grown and changed. I tried my best to have the chance to define what kind of forever I would get to celebrate. Let's hang on to what we've got.

Day 864: Guilt

This has been a weekend of babies for me. I went to a party today to meet a high school friend's newborn baby girl; afterwards I met up with another high school friend who had recently had her first baby. Last night, I went to see an independent film, Be Good, which was about what happens to people when babies rock their worlds upside down. I held these tiny little girls and realized how long it had been since my kids were that small; Lenny was so tiny for so long, and somehow, still, you forget. I sat through the film, which I enjoyed quite a bit, and saw everyone nodding their heads in understanding as the new mother dreads leaving her baby and going back to work.

And I began to realize something. So often, women talk about how guilty they feel as parents. Guilty that they don't spend enough quality time with their kids, guilty for working, guilty for staying home, guilty for having someone else watch the kids, guilty for carving out time for themselves.

I have never felt like that.

I struggled quite a bit when I went back to work when Lenny wasn't even three months old. I had to do it--Gabe was self employed, my income was steady, and I held the health insurance. Also, I wanted to work--just not that early in her life. It's absolutely ridiculous that we as a society think a 12 week old baby is old enough to be left with anyone but the basic food source, but, hey, that's America. I worried about her because she took so damn long to drink a bottle and I knew they wouldn't spend that much time with her. How could they? I was right--she was always so hungry when she got home. I remember kissing her before I left for the office and feeling a pang--but it wasn't guilt.

I knew I would be overwhelmed, and tired, and way too busy and I knew I would have to travel soon and the whole thing was really stressful.

But it wasn't guilt. I didn't feel guilty when I went back to work when Augie was six months old. I didn't feel guilty that I earned no income at all for four and a half of the months I was home with him, either. I didn't feel guilty that Gabe might have been one of the only dads alive to use a month of paternity leave to watch his baby by himself so the kid wouldn't have to start daycare until after New Year's.

But no guilt. I think it's the wrong word. Babies at that age don't need you. Now, they need SOMEONE. They need love, and nurturing, and they need to be fed and cared for and they need to learn how to be people in the world. But they don't need YOU. When I went back to work, Lenny was so little that she never knew any different, and Augie was a little pissed, but not nearly as angry as he would be a few short months later when his mom would stop nursing him all of a sudden. I liked working. I didn't really want to be home all day. I would have liked a few days a week at home--but not every day. Why should I feel guilty about that?

As a parent, I just don't feel like I have time for guilt. Growing up, my mom was home until I was about 11. And yet--I don't think she ever played with us, not really. She fed us, and talked to us. She colored with us when it rained. She sang to us on our front porch swing. But we played by ourselves or with our friends, and she did her own thing. I never resented that--that's just how it was.

So it's hard for me sometimes, when I hear other moms talk about how crucial it is to spend as much time actively engaged with your kids as you can, when I realize that Gabe is the one the kids play with, when I get confused when people tell me that everything changes when you have kids. I feel like I am supposed to feel guilty about not feeling guilty.

I didn't change when I had kids--not really. My life changed, sure. But me? I still read the newspaper in the morning and ignore everyone. I still yell at them to get out of the way when the game's on. I don't allow them in the kitchen when I'm cooking. I give them that mom look that I perfected years before I ever had kids (an ex boyfriend used to tell me he could feel me giving him that look through the phone) when they dare to come into our bedroom unannounced. I go on walks by myself because they're too slow to go with me. I spend a lot of time writing blog posts. I have never used baby talk--not ever, not even with other people's kids. I just talk to them--like they are normal, albeit small. I used to get so bored when I was home alone with the kids when they were babies, because I'm not used to sitting still. And then I realized, I don't have to sit still. I'll just get the stroller, make them walk with me. Walk around them and do what I need to do while they play on the floor.

Now, don't get me wrong. I got down on the floor with my kids and kissed their bellies and all of that. Just not for long. And I like holding other people's babies--or at least I like holding the babies of people I like. I'm no huge baby-lover, no overdeveloped maternal instinct here. But I love my kids. And maybe more importantly, I like them.

I just figured they would like me too. No matter how I was--because I'm their mom.

I could have felt guilty, but at some level I knew it wouldn't do any good. And now here they are--these kids who play games like "office" and "spinning" and pretend to make coffee or just otherwise do things that mimic me. Or, even better--they ACTUALLY do things that I do. Lenny reads the weather page every morning. She understands football. She knows how to flex her biceps. Both of my kids know how to make coffee. Augie likes to wear nail polish.

You know, every time I hear friends complain that their husband just comes home from work and plops down on the couch and turns the game on, I want to say (besides, um, that's what I do...), you know, someday your kids will look back fondly on those days their dad would watch the game from his special chair. They will remember the chair, and what brand of beer he drank, and they will remember trying to get his attention and being playfully batted away, and you know what? Those memories are just love in disguise.

But I still live with this secret--this guilt that never was, this thing that sets me apart from all other young mothers in my situation.

I never, not for one day, felt guilty that I had cancer.

I felt many things: terror, grief, anxiety, depression, confusion, anger. But not guilt.

There is some unwritten rule that if you have cancer as a young mother, you are supposed to do everything after diagnosis "for your children." You are supposed to stay alive for them, go through chemo for them, protect their feelings above and beyond your own.

But I didn't.

I wanted to live for myself. I did chemo because I had to if I wanted to be able to say that I did what I could to fight the triple negative beast. I wore a wig for a few weeks to walk Lenny to school because I didn't want her to answer questions--ABOUT ME. I didn't want to be the subject of that conversation. Once I stopped caring, I didn't ask her how she felt. I was telling her, look honey. I'm sure you don't like having a bald mom. But I don't like being bald either. We don't always get what we want. You'll get over it.

Of course I got lost in my own sadness when I thought of not seeing them grow up, when I wondered if they would ever remember me. BUT THAT IS NOT GUILT. In some ways, that is selfishness. I wanted to see those things, I didn't want to miss out, I loved them so dearly and desperately. It broke my heart to wean Augie so violently.

But it didn't make me feel guilty.

I think I've just broken about 10 breast cancer taboos by admitting this. We breast cancer survivors are supposed to be martyrs in a sense, living just to show others how to be strong or brave or "beautiful anyway" or some other shit. But all we want is what everyone wants, and that's more time to be ourselves in the world. And if I was a hardass mom before, well, I'm sure as hell still going to be one. I had my moments of crawling into bed with Lenny to feel her little body next to mine, when I was in my darkest place and I wondered if I would die. But I didn't do that out of guilt.

I remember how guilty I felt over not feeling guilty. I asked my mom if there was something wrong with me, to feel the way I did, to feel like I wanted to avoid my kids because it was too painful to be around them at the beginning, when I was supposed to be hugging them 24 hours a day. And, as all good mothers do, she told me a story. I will not do it justice--she would have to tell it to you herself. I suggest you ask her if you ever get the chance--it's really pretty fascinating.

She reminded me of something that happened when I was four years old, the same age as Lenny was at my diagnosis. My mom was 29, and she decided to have a hysterectomy. She had had issues for years, had been anemic her entire adult life, and she was happy to have the operation. My dad had a vasectomy years before that, so there was no question of wanting more kids. She went in to the hospital, and told us she would be home in a few days.

My mother bled to death from that operation.

She hemorraghed internally following the procedure. She realized she was dying--she saw the white light, talked to the ancestors from hundreds of years ago, was happy to go. Then, she thought of us, and wondered what would happen to us, so she screamed.

Nurses came in, and told her she would be fine. Her doctor, a man that many women in that feminist era didn't like because he called women honey and things like that, came in and asked what the hell is wrong with that girl? Nothing, doctor, she's just scared. Yes, something is wrong with her or she wouldn't be screaming.

And she flatlined, and he stripped the veins from her legs and sewed them into her stomach, induced a coma, and saved her life.

She was in the hospital a long time. Even once she got home, she was bedridden for months. My grandmother took a train 65 miles to come live with us so my dad could work. She cooked our meals, bathed us, walked me to preschool through the blizzard of '79. I took naps with my mom, but otherwise, I rarely saw her or talked to her. I knew she was there--but it was so different.

Finally, she got up and about. I threw something at her, angry for all the time she was "away." And she told me, enough of that. Mom's back.

She stopped telling this story long enough for me to ask if she felt guilty during those months. She told me that she never felt guilty, because she had to do what she needed to do to get better and live and be there for us, and to be able to be herself. She told me something along the lines of a phrase I learned from another cancer survivor 40 years my senior: You are the most important person in your house right now.

And that's unfair. But life is unfair. The kids will get over it. Gabe will get over it. I told myself that as I walked away from everyone on chemo days, went right upstairs, got sick, took to bed. I told myself that as I got skinnier, as I fought with doctors, as I telecommuted when I hadn't slept for five minutes in five nights. I told myself: Don't feel guilty. You need to do what you need to do to get through this in order for anyone to get over it. You don't have time to feel guilty.

I must have been remembering this story one day at the tail end of chemo when I made the decision to tell all of the people who had generously made food for us for four months that I was ready to cook for my family again. I went into the kitchen and started to get dinner ready. I was bald, and I had no eyebrows. I was in menopause and I had hot flashes every five minutes--literally. It just got worse with the oven on. I had scars all over my left side and soon I would have radiation burns as well. Lenny came in and asked me what we were having for dinner. Lasagna again?

No, I said. I haven't decided yet.

She looked at me strangely--almost suspiciously. She pouted and said, well, I don't care. I'm not hungry anyway.

I told her not to talk to me that way. I asked her why there were rugrats in my kitchen. I said:

Mom's Back.

And she continued to pout, but I saw that glimmer in her eye. I saw her skip into the next room.

There was never any need to feel guilty, because you know what?

I'd never left.

(For those who don't know--I have started a second blog, in order to give myself permission to write about the random things in life rather than the cancer things. You can now also find me at LiveChickenOnSix.)

Day 840: KatyDid 37

Why do we celebrate birthdays? I mean, don’t get me wrong. I believe that I am entitled to a birthday celebration that is at least a few weeks long—especially now. I throw myself parties and bake myself cakes and take time off of work and guide my husband towards gifts that I actually would like and go out to dinner and minigolf with my kids on a school night and raise a glass and initiate birthday sex and in general just breathe a huge sigh of relief and take a quick look over my shoulder, on every August 22.

Especially now.

But really, what’s the birthday celebration all about? It seems like we should be congratulating our mothers on the anniversaries of our births. What did we do, after all? We were just BORN. It’s not like that’s an achievement.

Except, maybe, it is. Sometimes you have to fight to be born. And maybe, just maybe, you show yourself, your true colors, from the start. The story of the long labor that led to my birth is legendary, especially because my dad told the nurse he thought I was trying to wiggle off of the hospital scale. He was told that was impossible, because newborn babies really can’t move. And then, the nurse looked over, and said, Jesus, that kid is squirming to get off the scale.

You know, just trying to get the hell out of dodge. Always looking for an exit—that’s me.

Lenny was not interested in the whole thing—I had to push her for two and a half hours. The heart monitor fell off inside my body, AFTER her heart rate plummeted precariously following the epidural. When she was born, her head was cone-shaped and beat up from the fight. She didn’t cry. Gabe wondered if she was even alive. She didn’t feel like eating, she had trouble hearing out of one ear, she had jaundice. And yet, people in the hospital came to see her—nurses, other doctors I had never even met-- and marvel at how pretty she was. Through it all, she just sat there—looking, always looking, waiting to see what would happen next.

Augie couldn’t wait to get the party started. He came three weeks early, spared me the 8.5 pounds my bum hips probably couldn’t withstand, and was completely healthy at just under 7 pounds, wailing and eating and looking pissed off right away. After nursing furiously every few minutes for hours after birth, he fell asleep for two entire days. Within weeks he was laughing in his sleep.

So maybe that’s what we celebrate—the fight, and the way we experienced it, and the fact that we’ve had the opportunity to do it again, for one more year. The initial fight is one that we will never remember, that lives on only through stories told to us by people who were there. And that story begins the story of our lives, the lives that so many have to fight for every single day.

I wrote a pretty damn good blog for my birthday last year, if I do say so myself. I summed it up near the end, saying, “I think about getting old, and I still hope I get to do it.”

And that’s the truth. I don’t think about getting middle-aged, or worry over my lost youth. It helps, I suppose, that I still get carded sometimes, and that kids 15 years younger than me whom I see as potential babysitters assume I am around their age until they find out the truth and then they say things like “wow you look GREAT,” (for your age you freaking dinosaur lady, I mean my god when I’m that old I will be this short of THE GRAVE.”)

I suppose it helps, but really, I want to be 37. I definitely feel 37. I’ve felt like an old lady since I was a child. I don’t mean that in a negative way. But life, and the experience that came with it, was always very much with me. I tell my kids that all the time—this age? This specific number of years? I’m proud of it. Lord knows, I’ve earned it.

The kids see things differently, of course. They want to be older—right now. Augie figured out when he was 2 that it would be 19 years until he was allowed to drink a beer, so at age three he has switched that question around: “Mommy, how old do I have to be to drink wine?” Lenny always wants to guarantee that she will be three years older than her brother NO MATTER WHAT. She asks how old I was when I got married (never when I met her dad, because, in her mind, we have always been married, waiting around for her and her brother to miraculously be born), what year it was when I learned to drive or left for college. Those questions are on her easy days. Other days, it’s “mom, is there anyone in our family who was alive 90 years ago?” “No one lives to be 200, right?” “When the universe began…”

CHRIST LENNY, ENOUGH! Can’t you just ask me about the legal drinking age like your brother?

Augie wants to know WHEN his best friend is moving back to Chicago—not IF. He asks when he will go to Lenny’s new school, how many years it will take to get there. The answer could possibly be never, since getting into the public school that Lenny will attend in the fall is as notoriously difficult and absurd a process as anything Kafka dreampt up.

In a way, Lenny understands already, and Augie’s starting to as well.

Time—what a concept. Time keeps moving, but at some point, you stop moving. What a thing to wrap your mind around. To them, time is about experience—the things you get to do, the places you hang your hat. To me, it’s about memory.

How old was I when I started drinking coffee? I don’t remember—probably 15? One day my mom was making coffee for herself and maybe I asked for some, and it was just the two of us living in the house at that point, so she didn’t flinch, or she offered me a mug, or somehow we just found ourselves silently reading the paper and drinking coffee like that’s what we had always done.

What do you mean, there used to be two Germanys? Well, see, there was this wall…we talk about it as if it “fell” when I was 14, but of course that’s not really true, and that physical wall was all tied up with this political concept it is hard for you to understand and this other country that no longer exists. I remember being assigned the role of the Soviet Union in a debate in 6th grade, wherein I was forced to defend my nuclear strategy, and then right around my 16th birthday I was cuddling with my boyfriend at his parents’ house on the couch in the basement and we were watching this whole scene involving an attempted coup, and we looked at each other and actually said, in spite of our youth, we are watching history unfold on the television right now, and within months there was no more Soviet Union, and no matter how much geography you know right now, you really have no idea what I’m talking about, do you honey?

Or, time sneaks up on us when we least expect it to or want it to, and when we are out at the karaoke bar for a fun celebration for a friend’s birthday, right after we celebrated my birthday with a big party at our house that I baked ten different desserts for, suddenly your father disappears. Time is so relative that it takes me a while to realize he has gone. Finally I text him and he tells me that he is out in the car. Excuse me? What the hell are you doing? Well Kate I really wanted to sing a romantic song to you for your birthday but then I just started thinking about the last time I did that at this bar, two years ago when you were bald and in the middle of chemo and everything came rushing back at me and I knew I was going to lose it so I went outside. And at that time and in that moment I knew I should sympathize but I didn’t. I told him fine but you’d better get your ass back in here soon, and when he wasn’t back in a few minutes, I sent him a text that summed up my feelings on the matter and prompted him to scurry back into the bar:

Time’s up.

And it was, in a way, but of course, in another way, it wasn’t. His time wasn’t up yet. Neither is mine. I’ve just had to fight a little bit more for the time I’ve had. So here’s to the fact that Katydid 37, when she wasn’t sure if she would do 35. When I hear another woman my age lament the closeness of 40, I think, girl, I’m TRYING for 40. In 2015, I hope to be able to mark 5 years NED, 30 years of being able to walk again, 9+ years of watching my heart walk around outside of my body, 23 years of wondering if my brain’s electrical impulses would cooperate without help, 40 years of the stubborn, difficult, eye-rolling, trash-talking, fight.

I’m trying for it, for more of this concept called time, because I don’t know any more than anyone else when my time will be up. The jury’s still out on that. The jury’s settled though, on one other matter:

Clocks and calendars keep some of our time, but our stories keep the rest.

Thanks to Tracey Medrano Becker for taking the first two pics in this blog at my awesome birthday party.