Day 945: What Fools These Mortals Be

I need to start this post by saying that I'm sorry if I offended anyone by using a Shakespearean quote for the title. I am not a long-dead Englishman, nor do I intend to imply that I am anywhere near as interesting as Puck, though the last time I attended a performance of A Midsummer Night's Dream (at the Shakespeare Theater in Chicago, with my kindergartener, on a school night), a bald woman was playing Puck.

So there's that.

Regardless, I'm writing this today because I'm having one of those parenting moments that is compounded in difficulty by the fact of me having had cancer.

I have a 3.5 year old who is very cognizant of death, and he wants to talk about it--a lot.

Some would say that it's a stage, or that all kids go through that at around his age. I disagree. I remember my brother being very concerned about death and about the bad things that could happen to people, but honestly, I was not--not until I got hit by a car when I was 9 and actually almost died. Even then, once I admitted to my grasp of mortality and imminent death, I went back to normal, concentrating on the day to day aspects of life.

My daughter is like me. Lenny is extremely bright, very aware of what life is all about and how things relate to each other, but she is also very focused on her own small version of life, of what comes next. And then, there's Augie.

He's the kid we are convinced has been here before, because nothing else could explain him. You strip away the crazy antics and the cuteness and the wild red curly hair and you are left with a person who seems to understand the adult world better than most of us adults.

This is the kid who grabs your face with his hands, looks you in the eye, and kisses you. The kid who nods his head in appreciation of your choice of wine. The one who sees a pizza delivery car and proclaims that it looks like a police car because there is something on top of it, and you realize he is only pointing this out because you are going over the speed limit. This is the kid who seems fearless, but shuts his eyes when crossing a bridge because "the car is too heavy and we might fall." The one who turns away when the trapeze artist is doing her most complicated tricks, because he doesn't want her to "fall all that way and die."

He is the kid who will ask me, so earnestly, "When I am in fourth grade, will you die?"

And I, being me, being in the situation that I am in, take his question seriously and say: "I hope not. I'm young and healthy right now, and I plan to be that way then too."

Augie doesn't really understand that I had cancer. I mean, he knows about it. We talk about it. But he doesn't remember any of that time, and if he sees a picture of me bald, he knows it's me, but he speaks about it devoid of any context of cancer. It's just another haircut to him. He knows that cancer is bad and it can kill you, because Lenny casually says things like that sometimes. But his interest in death is larger than that, and is not related to me--I know that.

Augie knows that we all will die eventually. He is just too young to understand what eventually means; to him it could be tomorrow, or in 4th grade, or in 500 years. He recognizes the impermanence of life, the thing that is most difficult for anyone to discuss. He says things like "I don't ever want to leave this house," because he knows that he will, and he loves us, and it makes him sad. He talks about "when I'm grown up Lenny will not be with me," because it breaks his heart. He is clinging on to those damn mamas because he knows he is too old for them, and he doesn't want to be too old. Hell, his interest in the legal drinking age is probably tied up in all of this too--or at least I'd like to believe he's not already planning his egregious hell-raising stage.

This is a tough one for any parent--trying to figure out how much to say, what to reveal, what to leave alone. It's a balancing act of answering his questions honestly and reassuring him at the same time. But for me, it is also so painful, for entirely selfish reasons.

Like many people who have spent time cheating death--and I say that not just as a cancer survivor but as a survivor of other things as well--I walk around with death as a constant companion. I've made my peace with the man, I suppose. I stop myself from going to that place that allows me to think about eternity after I'm gone, because I don't want to wander the world looking at people and seeing nothing but bones. A lot of my personality--the lightheartedness, the lack of pretension, the fact that really little things can please me so easily--is probably directly related to this knowledge that I've had for almost 30 years. Death is coming, for all of us, so try not to sweat the small stuff.

These days, it's been harder for me to just shrug and repeat that refrain. Maybe that explains the bourbon or the gin toddys I have at night. Maybe it explains the constant need to move my body, even while working in the office or at home--I have this inability to sit still, to be immobile, just like my son. This has gotten worse for me over time, not better. People say he will grow out of it, but I doubt it. Augie knows what's coming. He wants to feel as much as he can in the meantime. I understand him.

How can a parent admit to the eventual death of a child? It is impossible to contemplate, except with the understanding that of course I will go first. If I go early, that will make it easier to believe that my kids will live to be 300. But if he needs to acknowledge it, all I can do is acknowledge it with him and tell him that eventually is a very, very long time from now. Could that be a lie? Sure, I suppose. But I know my son. I understand him, as I said. He knows that though I am his mother, I have not one bit of control over life and death. And so he says to me, "mom, come on...lie to me."

So I will. And he will feel better, knowing that I am willing to look him in the eye and take responsibility for something I cannot possibly take responsibility for--his eternal safety and happiness. It is the fact that I would if I could that comforts him. And so we talk about death while we eat cereal, and sometimes I get exasperated with him over it, just like I get exasperated when he takes one bite and decides it's time to run laps around the house before he takes the next one. It's all in a winter's morning at our house.

It's strange loving people while working so hard to push them away from you, so they can walk away and become themselves. As parents, we think that we have these conflicting feelings on lock, but really, kids feel it too. And it's hard to know whether we should shield them from all the knowledge in their little brains, or work with them on finding an appropriate place to put it. I guess I am working towards the latter.

All of this made me think about a poem I wrote for Lenny just after she turned one, when she learned to walk. The poem takes place in early January and focuses on the time when she was about ten months old and starting to grasp the concept of walking. One of my greatest cancer regrets is that I don't remember watching my son learn to walk. He took his first tentative steps right around the time of my surgery, and really got moving while I was doing chemo, and I was so sick that I missed it. And now all he does is run, like he is hellbent on all the places he needs to go, until he slows down and looks at me with those old eyes and says "Kiss, mom. I love you."

Me too kid, me too.

Walking
by Katy Jacob

It’s started again.
The whole cycle, the twelve tests.
Because we live here,
you get to see it all at once—
early heat, a river of ice,
eighteen shades of blue.
Or you would, if we let you out.
But the world around the living room table
is a grand place, it exhibits signs
of what is to come, or what is possible.
Cold grooves in the floor,
hairbrushes, paper and keys,
a place to hide things.
You’ve put your faith there.
We can’t know what will happen
in your mind as you let go.
When you do, we’ll sink back
into ever lightening evenings,
and touch this table,
knowing that’s where you learned
to let your heart leap up
as your feet traced a month’s worth of days.
And knowing too that we are not the only ones
who impatiently tell time
by how long it will take us to get to
the places we’ve never been
from the place someone who loves us
will always want us to return.

Day 924: A Letter to My Daughter on Her Fifth Birthday

As I have been trying to help promote this year's Listen To Your Mother--Chicago show (submissions are due January 15!), I thought it would be a good idea to include the text of the piece that I performed in the 2012 show; this piece, in this exact form, hasn't been posted here yet. You can see the video on youtube (turn up the volume!), read the producers' feelings about it, or ponder my own thoughts about what the experience meant, but maybe the most useful thing would be to show you what I said. And yes, I mean said, not read. Because Lenny was in the audience, and I said this to her.



A Letter to My Daughter on Her Fifth Birthday

by Katy Jacob

Dear Lenny:

Today you are five years old, and I am writing you a letter. In some ways this entire breast cancer blog of mine is a long letter to you and your brother. I write it with the selfish hope that if I don’t survive, you will know something about me, other than that I loved you and cooked good dinners and made you laugh. It seems to me that almost everything about how a parent loves a child is selfish. We want things for you, we steep ourselves in denial for you, but really we do those things for ourselves, because you have taught us how short our lives really are. You make us wince with your innocent curiosity: “When I am grown will I still see you every day?” “How old will you be when I’m grandma’s age?” “Will I have long hair, or do you think I will get cancer and my hair will fall out?”

And it is upon hearing those questions that we make choices. We make the choice to acknowledge the imminence of separation, illness, and death, and then to just let it go. If I could make any choice, I would go into the future so that I could know you as a grown woman, and see the answers to your questions for myself.

In the meantime, I am astounded by you, by how you are such a…Lenny. Parents like to say that their children are a part of them. That is simply not true. Take, for example, your memory. You remember all of the things we say, all of the things you’ve seen, all of the people you’ve known. That’s just a part of you, like so many other things. We did not make you smart, or fragile, or funny. We did not make you shy around people and comfortable on a stage. We might have taught you empathy but could not teach you the appropriate times to use it. We did not make you fussy, or willful, or contrary.

We might have given you your looks, but we did not tell you how to handle them. I still laugh when I think of that birthday party we attended when you were three, after the fourth or fifth father told you how beautiful you were and you looked him right in the eye and said, “I know that. Are there cupcakes?” As you get older, I know how weary it will make you as the questions turn into propositions and the appreciative glances turn into unwanted stares.

I wish I could make a different world for you. When you ask how old you will be when this happens, or that happens, you are really asking, “Mom, what will I be like? What will the world be like?” And the answer is that the world will be the same, but you will not, because that is what happens with people who live in the world. I can remember being five, being as happy and friendly and shy as you are today. What I don’t remember is when that was lost, when I learned how to be mean, to fight with my fists, to run and not stop running. In the scheme of things I wasn’t that much older than you.

I want so desperately to protect you, even though I know I might not be there to do that. On some level you know that too. That knowledge is a burden that I gave you, but I didn’t tell you how to deal with it, because I really didn’t know how. I realize now that all I could do was deal with my burden myself, and that you would learn from me how to deal with yours.

I only wore a wig for a few weeks, and only for a few minutes a day when I walked you to school, because I didn’t want you to have to answer questions about cancer. I spent close to a thousand dollars on hair, and then spent six months just walking around bald. And that is the lesson I was teaching you, though it was hard for me to see it at first, until I learned that you were giving preschool cancer tutorials, telling everyone: “My mom is on chemo. It’s medicine for people with cancer that you get through a needle in your arm. It made her lose her hair and it can make her sick. Soon she won’t have to do it and she will feel better on radiation.”

As with many things over the last five years, I just didn’t see that one coming. That is the gift you have given me—the gift of being continuously surprised. It is difficult to find a way to thank you for that, or to repay you. So what would I give you if I could give you anything on this day? I could be trite, and tell you to be yourself, to enjoy life, to have no regrets, to find something that you love to do, to be a part of improving the world. But the truth is I just want to know that you’re there.

Perhaps that is what I am trying to pass on to you, this strange ability to be a comfort just by being. It might be a better way to walk through life than any other. Or maybe I tell myself that to make it seem acceptable that I am not the things that I am not. I am not the perfect nurturer. I have been stern, and angry, and busy, and sick, and scary. I often read the newspaper and ignore you. I am the reason we watch sports on TV, not cartoons. I leave the house a lot to exercise. I cook and clean and collapse on the couch and I rarely get down on the floor to play with you.

I want to offer to you the one thing that I can’t promise you: I want to still be there. I want to see and talk to you every day. Someone once told me that if he didn’t see me all of the time, it would make him sad, but he wouldn’t miss me, because he knew he would see me again. I will always remember how he paused before he said, but even if I didn’t, it’s enough to know that you’re out there in the world, and that you’re all right. Lenny, if I ever get to a point where that’s all I can ask for, and the last thing I know is that you and your brother are there and that you’re all right, it will be enough. Happy Birthday, honey. I love you.

--Mom

Day 915: The Ghost of Christmas Yet to Come

Our Christmases look much like the Christmases of other young families in places like Chicago at the front end of the 21st century. We bake cookies. We try our damndest to encourage our kids to believe in Santa, in magic, and we get teary-eyed when they explain, using their wonderful childlike logic, why they do believe in things that seem impossible. We attend adorable holiday performances at preschool and elementary school, even arriving extra early to get a front row seat so we can take a video of our daughter shouting out her lines in her coveted role as an elf, recording for posterity her pride in being one of only three first graders awarded a speaking part. We buy too many presents for our kids. We tell them to listen for hooves and sleighbells on the roof, and remind them that Santa won't arrive until they are asleep. We change our handwriting and choose different wrapping paper for the presents from non-magical adults. We, my husband and I, have been together almost ten years and yet we don't really know what presents to bestow on each other, so I buy him clothes, which he doesn't want but always likes, and he buys me jewelry, which is always different than what I would buy myself but looks like me all the same. We throw a big party. We drink a little too much. We bring our families, strange as they are, together. We take time off of work. We love each other.

And so it goes. Like all parents, witnessing Christmas through our children's eyes reminds us of our own years when we were caught up in the magic on the other side, happy to be on the receiving end of all the efforts that adults put into making us smile. Like all couples who have children together, but who at one point did not, we remember the holidays that we spent when we were younger and newly in love. We remember our first Christmas in our first house together. We think about the first Christmas that we had as a family, our family, the one we made, as a choice. And I at least think about my youngest child's first Christmas, which was the last one he had with parents who still believed that the world was offering our beautiful little family a long and unopened gift that just couldn't possibly end.

I spent today, and most of the last month or so, very much wrapped up in the joy and stress and reality of this Christmas, this present-day, 2012 Christmas.

And perhaps we are not that different than other couples in this, in what I am about to say. Perhaps I should not speak for my husband, who might not feel this way at all. But I have these moments, these moments of clarity both large and small, where I am reminded of the Christmases yet to come, including the ones that I will never see. It's that glimpse of the void that is part of what makes us all human, but it is something else too, something less dramatic, more practical, really.

It doesn't happen often, but I think about holidays, seasons, life events that might happen in my absence. I don't do this out of self-pity or in order to bring some kind of dramatic flair to my life, but rather because I've been put in a position to think about it.

During our holiday party, we were happy that of the 50 or so guests, our kids' best friends were able to attend. Lenny has had a best friend since age 2, and Augie since 7 months. I never believed that children that young could make such meaningful bonds until I witnessed it for myself. Those bonds have lasted through different schools and now even different towns. And as Augie's buddy was leaving, we decided to take a few pictures of them. The photos of them are usually just blurs of little boys making superhero poses...but not all of them, not this time.

When I saw this picture, with the two of them looking like pint-sized frat boys, I had to turn away and shut my eyes so that no one could see my tears. For the first time ever, I could imagine what my son would look like as an older child, a teenager, even a man. In absence of the three year old voice, the goofy mannerisms and outlandish behavior, I could see him, as he will be someday, this good looking little boy of mine.

And it brought me back to all those days in 2011, when just the sight of boys--teenagers especially, but even older children--would make me wistful with that strange, reverse nostalgia that comes from something like cancer. I used to wonder, what would it be like if he was taller than me? If he had a deep voice? If he was embarrassed to be seen with me? If he began to date girls just like me or the opposite of me?

And will I live to see any of that?

Of course, none of us knows what we will live to see. I have lived to see more in the last two and a half years than many women diagnosed with triple negative breast cancer. I have seen a lot more than a lot of people who are no longer here for one reason or another.

But I still think about it. And while it makes me wistful, and somewhat sad, to imagine the things I might miss, for the most part, the tears are not tears of sadness.

I am grateful for the strong belief that I have, that every parent has, that he will grow up, that he will become a man, that he will live a wonderful life, with or without me. It is the almost frightening power of that belief that brings the tears.

That belief is so strong that it enables us to invent magic. On some level, maybe we as parents need this Christmas type of magic to be real, so that we can convince ourselves that through some magical force, our children's lives will be beautiful and eternal, even here on Earth.

Like many parents, I gave a lot of thought to what I would tell my daughter if she asked me about certain recent events that took place in a first grade classroom.

My daughter is in first grade.

Do you hear me?

My daughter is in first grade.

She has not asked me a thing, and I don't think she knows about it. I have no intention of telling her if she doesn't ask. But I did figure out what I would tell her if she wanted to talk about it:

Think of all the adults who have protected you all of your life. You have attended daycare since you were three months old, and every adult who has ever cared for you, and every teenager for that matter, has loved you. They would all protect you, no matter what. I don't have any idea why such horrible things happen. But I want you to understand something. Do you remember when I had cancer, which is obviously a bad thing? Do you remember how easily I talked to you about it, how I told you what would happen, and how we didn't keep things from you? Do you know why I was able to do that?

Because it was happening to me, not to you. And I could take it. I could stand it.

And I know, because she's my kid, that she would understand what I was trying to say.

And I know, I just know, that they will have a million more Christmases, whether I am here or not, and the magic it takes for me to believe that is the magic that Christmas is made of, and that is good enough for me.

Here's to a wonderful Christmas that was yet to come just a few short years ago, when it was hard to see, but it happened all the same.

Like magic.

Day 853: Childhood, Defined

One of the unique markers of parenthood is that it gives you the opportunity to actually observe childhood. When you are a child yourself, you are just living your life, aware that you are small, but lacking the experience that informs what is special about childhood. Then, once you are grown, if you choose to have children, you see these once helpless people begin to do things for themselves. You observe a series of firsts, and you take an insufferable number of pictures, and you record the cute things that your children say, and you think back to how it was when you were their age. You juxtapose your own experiences onto theirs. The fleeting nature of time makes you wince, or cry, or hug them tighter. You think about how short childhood is, compared to the rest of life. You use words like innocent and precious.

You spend most of your time being hopelessly wrong about everything.

I took my daughter to school today. I recorded my feelings about leaving her at her first day of first grade. I lamented how sad her brother seemed to be that she wouldn’t attend Montessori school with him anymore. I shed a tear or two. I wished she would have looked up to say goodbye as I waved to her at the same time that I was glad that she was so greedily reading the new workbook at her desk.

I did what parents do. I thought about milestones, new phases in life. I acknowledged that in a blink of an eye that child will be in high school. I considered how absurdly fast six and a half years have gone, and part of me would have liked to hold that image of her tiny six year old body at her desk for a long time.

But only a part. The rest of me is happy for her and glad that she is big enough to do some things she couldn’t do for years, because I know that’s what she wants—to get older, all the time. I know that being little has its disadvantages. I’ve learned some things, perhaps due to the things that happened to me as a child. When traumatic things happen, you either choose to forget how you felt at the time, or your feelings are imprinted so strongly in your brain that it would be impossible to forget them, no matter how long you live. I am in the latter camp, and I can honestly say that I remember at least some of what it felt like to be a child.

It was hard. Now, don't get me wrong. I had a mostly happy childhood, in spite of everything. I was loved and had friends. My home life was troubled and we didn’t have much money but I was never hungry. I was girly, I was a tomboy, I was a lot of things. I worked. I shielded other people from difficult truths and from my own emotions. I kept a lot to myself. I learned how to say goodbye with grace—to people, experiences, old ways of being. But I had no control over what happened to me, and I remember that. I didn’t make big decisions. There was a world and I lived in it, in a small way. I was important, but not in charge. There were so many things that I didn’t understand, that adults didn’t want me to understand.

I don’t remember my first day of first grade, or of any grade. And that is not because the years have taken their toll with my memory. It’s because those days were just not that important to me. There are many, many other things that I do remember. Lenny might remember this day. She might not. Her brother might quickly get over her absence in his daily life. He might not. Their parents chose their reality, but could not choose how they felt about it.

Yesterday, the kids played so beautifully together for hours that I felt that something important had shifted. I figured that those 10 days together in the north woods, with no other kids to play with, must have caused it. And then I heard crying. Mommy, Lenny won’t play with me anymore. I want someone to play with me. And I walked into my daughter’s room, to see her reading on the floor while she ignored her wailing brother. She looked at me half-defiantly. I just want to be by myself.

And I know that—I have always wanted that, birth order be damned, I’m the younger one and I’ve been trying to be alone for 37 years. I’ve wanted to be alone as a child, a teenager, a young woman trying to figure out how to be in “adult” relationships where people actually want to be around you all the time, as a mom. I manage my family’s schedule such that I am by myself (usually exercising—walking, spinning, strength training—such good excuses) for at least two hours every single day. I got it, I understood her.

And I took the book out of her hand. Lenny, this is the last day that you have to play with your brother without worrying about homework or your school schedule. You will play with him all day.

I was being a tyrant, making decisions for her that I knew went in opposition to what she wanted. I expected a fight. She just smiled, summoned up that coddling tone of voice that makes her sound like a grandmother and said, OK Augie do you want to play marbles? I’ll let you have the shooter.

Because she understands. She and her brother have been figuring out how to balance their different temperaments all their lives. They are only successful at it because they love each other so much, and because they both understand, she more than he, how little time they have to be together.

He knows, to some extent. He talks about not seeing Lenny every day, and we assume he means because she is no longer at his school, but really, he means, someday I know we will live in different places. So he grabs what he can. He wants her next to him when he’s eating a snack. I see him look at her lovingly and then check himself, right before he puts her in a headlock. He says Lenny I am trying to wrestle with you.

I am trying to love you.

So she elbows him in the ribs, just like we taught her to do, and loves him back.

They know about the arc of life, and its complexities, just like we do. It’s just so hard for us to admit that they know. So they shield us from their understanding.

Gabe had offered Lenny a test run of our new routine, telling her on Sunday night that we could wake up early (7, maybe) on Monday morning and see how long it took to walk to the bus stop. I have been having trouble sleeping for the past week, perhaps worried about dropping my small child off with drivers I don't know, entrusting three different sets of parents with her after school care. I woke up around 3:30 yesterday morning and was restless. Around 4:00 I woke Gabe up, which is easy enough to do. Around 5, he emerged from our bed naked and went to the bathroom. He came back right away, looking petrified. Lenny’s awake. Both of us thought, oh no, did she hear us? And I asked what she was doing.

She was sitting quietly in bed reading The Secret Garden, one of those classic children’s books where the protagonist is an orphan with a total bullshit situation, waiting for us to wake up so we could walk her to the pretend bus. She didn’t mention hearing anything. She didn’t mention her dad walking naked in the hall.

She spared us, like so many other times. Like the time when she asked me where babies came from, when I was in the middle of writing a piece for work at home. I decided to take her literally. She didn’t ask about sex, after all. She wanted to know how a baby could be inside a woman’s stomach and then emerge into the world. I told her about the uterus, and that babies are born through women’s vaginas. She thought I was insane but ultimately decided I couldn’t make that shit up. She reasoned that because she had a uterus and vagina, she could one day have babies but her brother could not. I said he could have them in the sense of being a daddy to them, but he could not give birth to them like she could. So she asked, so what does the daddy do? He just has to marry the mother?

And I fed her a snack, not yet ready to get into the whole thing. Because what will I say? I’m no good at telling lies. I can’t be one of those parents who talks about fallopian tubes and zygotes and sperm as if any of that bears any resemblance to what a kid wants to know. I can’t be one of those parents who says sex is something you do when you’re an adult, when you’re in love, a man and a woman blah blah. Because none of those things are true. I remember learning the facts of life, from one of those books that my mother read to us. She allowed us to laugh at the funny parts, which was pretty much all of it. I was maybe 3 or 4, my brother 6 or 7, the same ages as my kids are now. My mom answered our questions—the ones we felt we could ask. I never asked the only question I wanted to ask.

Is that it? There has to be more to it than that, right?

Because I knew that I was a child, and my mother was a mother, and she would not know how to answer that question right then. Just as Lenny knew to pretend to go back to sleep and wait a few hours for the test run. Just as she will probably never ask about the rest of the facts of life—we will just have to offer the information. She doesn’t really know, and yet—she does. She’d like to spare us the trouble.

She knows that adults get to do things kids don’t get to do. I always say, who makes the rules? And she says you do, but I make the rules for my guys (stuffed animals). She believes this to be true. She believes I make the rules for Gabe, though I let him make some of the rules some of the time. And that’s what being a parent is—making the decisions, taking that burden on yourself. My daughter wasn’t sad to go to a new school—how could she be? She has been in daycare since she was three months old. I was not letting go of her and entrusting her in someone else’s care for the first time. She made it clear that at first she did not want to go to this school for “gifted” children, as she wanted to be in school with her best friend. Then she changed her tune, saying she wanted to go but not for the whole 8 years. And now, she isn’t saying that anymore—and it’s not because of her new-found love for the place.

She knows she lost. We made a decision for her, and she had no say in it. She had to take the test and pass it, she had to get through the crazy lottery system. But then, we signed the papers and she couldn’t do a damn thing about it. We aren’t alone. No matter what you do—stay at home until they’re six, homeschool until they’re 17, private school, public—YOU are making that choice for them because you feel it is the best one. Parents can tell themselves that their children should make choices, and that’s right. Small choices are empowering. And they are the only ones children get to make, as we shape their lives for them because we know better, because it is our job.

We switch their school or move to a new house in a new town and they see their friends less because they cannot control their own schedules or drive 30 miles. They get over it. Or do they? Lenny still remembers her best friend from her old daycare—and she hasn’t seen her in four and a half years.

Augie will get over not seeing his sister all the time. Or will he? He will accept it, of course, but it will make him sad and his sadness will be real, not a three year old sadness but the sadness of someone who understands that even your most beloved people leave and live their lives without you.

I know I sound dramatic. I should say that I do not believe that children are like adults, or even that teenagers are like adults. But I also don’t believe that childhood is lived the way that parents think it is lived. We think that kids don’t know that their childhood is short-lived—but they do. They know just about everything we know.

When I write a facebook status about my three year old telling me he will listen to me when he’s six, dozens of people "like" it. It sounds so cheeky. But he was serious. He was saying look, I know I won’t get away with this forever. When I’m six, I will be twice the age I am now, and maybe then I’ll start to mind. Of course, he won’t—not really. I never did. I never listened to a thing I didn't want to hear. Now, my parents might disagree. I was very well behaved. I never talked back. But WHY NOT? Because I knew that if I had a track record of being good, I could get away with more later. I did that at home, and I did that at school. At home, I minded, and I did well in school, and I didn’t cause trouble. So I got to drive my mom’s car, and be left alone in the house and go to parties. Hell I got to go to my boyfriend’s parents’ lake house for my 16th birthday—JUST THE TWO OF US. At school, I studied and wrote excellent papers and served as vice president of my class and volunteered—and so I got to wear what I wanted, and I never got in much trouble for ditching, and when I stopped trying entirely I was forgiven.

I can see what Augie will do, because I have done it myself.

How different am I today? How is adulthood that different from childhood? I think it is different in that we learn to keep things to ourselves, we gain coping mechanisms to manage our losses. But the things there are to keep, and the losses--those are really all the same. I still think about my best friend from 1st grade, who moved to the Philippines. I knew when she left that she would fade into the world and I would never know anything about her again. I wrote a story about her, and it won an award. I was seven.

When Augie tells me with pride that he can finally pump his legs while swinging, because Lenny told him to close his eyes, and he does that to concentrate but also because he says he feels like he is flying, I smile. I smile not because he is cute, but because he is RIGHT. When he gets stir crazy and needs some exercise and gets aggressive and out of control, I lose patience with him not because I don’t understand him but because I DO, and because I have learned how to tame myself and I don’t always know how to teach him. When a stranger stops me when I’m ordering ice cream and grabs my hand and says “my god you have beautiful children,” I look at them and not at her when I say thank you. I remember hearing about my hair all my life and how the attention made me cast my eyes down, and I want to say to her “you know, they are short, but not deaf. Why are you saying that to me, and pretending that they aren’t even there? I don’t have children at all, not really. They have themselves.”

They have themselves, and their experiences, which we are powerless to change, no matter how much we’d like to change them. Sometimes I think about the day when I will have to explain to Augie that I had cancer, and what that is, since he has no idea. He was just a baby—it would be like telling a child he is adopted, as if that should be relevant information in his frame of reference. But the thought lingers with me more and more.

Augie has been talking about death. He asks, how old will you be when you die? How do we die? When I die, I won’t see anyone anymore, right? He sits in the car on a long road trip with his “mama” in his mouth, and then he takes it out and asks, out of the blue, “When I am ten, will I die?”

These are questions that I do not answer correctly. Perhaps if he asked about a pet dying, or an old person, I could respond well. But he asks about himself, and I cannot bear it. I tell him not to focus on dying. We all die, but hopefully not for a very long time. We are all young and healthy now. And he nods and looks down, completely dissatisfied with what I am telling him. I ask who has been talking about dying at school, as if he couldn’t have had the thought in his own mind. He makes something up to pacify me. Gabe tries to help, and tells him that there are three ways that people die: They get old, get sick, or get in an accident. Lenny chimes in that you could get struck by lightning, which Gabe classifies as an accident. Then she says, or you could get sick, like…

And I shoot my dagger eyes at all three of them and say ENOUGH. WE ARE DONE WITH THIS CONVERSATION. Not even daring her to finish the sentence. She realized, I’m sure, that it was me she was sparing. After all, she couldn’t be sparing Augie. He let it go, then ran up to me, grabbed my face like he does when he wants a kiss, and said “hug.”

I don’t know why I worry about telling him. He already knows.

Day 525: Pink This! October and Triple Negative Breast Cancer

I've decided that if I'm going to write any more blogs this month, it's going to be to provide a perspective that's different from the bombardment of pink that anyone fighting breast cancer confronts in October. Because, really, we are all very aware of breast cancer. And we are aware that others are aware of it, and yet, all of the marketing, the selling of pink products, and the hype has not fundamentally changed the reality of what it means to have breast cancer.

In another blog, I'll write about how the pink teddy bears obscure the grim reaper, how women who are dying of breast cancer or are coping with metastatic disease are often left out of the stories of hope and inspiration. Pink culture makes a hierarchy of breast cancer survivors, of which "survivor" is a crucial moniker, along with the "positive attitude" and "inspirational lives" that we are all supposed to be leading. I will write more about that later, and about how there is no bravery or inspiration inherent in this fight to save the life you didn't even know was in jeopardy. Today, I'm going to write a little bit about what it means to have triple negative breast cancer, to literally be the poor redheaded stepchild in this whole breast cancer family.

Statistics can be shocking things. As a person who does research for a living, I am fond of them, and yet I know that they can be manipulated, and that they might mean little to the individuals represented by the numbers. But I think they are quite worthwhile when trying to open up the conversation about breast cancer, a disease that people often lump (pun intended) into one group when it is in fact several diseases, maybe dozens.

Statistics have not been on my side with breast cancer. Only 2% of women with breast cancer are diagnosed under age 35. Check. Approximately 15% of breast cancers present as triple negative, meaning they are not receptive to estrogen, progesterone, or HER-2 (and meaning that there are no specific maintenance medications or specified treatments for those cancers). Check. About 10% of breast cancers are multifocal (more than one tumor present, originating from the index tumor). Check. And I'm sure there is some miniscule number of women who are diagnosed with breast cancer while lactating. Check.

Why am I bringing this up? Well, when I found out I was triple negative, it didn't mean much to me. As I learned that my cancer was the most aggressive kind of invasive ductal carcinoma, I tried to ignore the articles on the internet that told me "women with triple negative breast cancer often have poor prognosis." My medical team did not mention my triple negative status very much when describing my treatment plan. They didn't want to talk to me about prognosis at all. Once I knew I was stage one, that was considered very positive, especially when the second surgery cleared my margins. My gruff oncologist told me that I would need to be watched closely for a long time, because I was young and he expected me to live to be old, and therefore I had a long time for my cancer to come back.

That might be true for most breast cancers. But the reality is that there is a high incidence of recurrence, even for early stage cancer, for triple negatives, in the first three years. Likelihood of recurrence starts to fall off at that point and becomes almost nonexistent after eight years (estrogen positive cancers have been known to recur 15 or even 30 years later). I was also told that I should be extremely glad that I was not BRCA positive; everyone was pretty surprised about this, as there's a strong link between being triple negative and have the BRCA mutation, especially if you are diagnosed at a very young age. But here is another statistic. The American Cancer Society puts the five year survival rate for women with stage one cancers of all types at 88%. Mind you, that means that more than one in ten women with early stage breast cancer that did not spread to their lymph nodes will die from cancer within five years.

It gets more interesting, though. A recent study compared triple negative women with the BRCA mutation to those who did not have it. Of those who DID have the mutation, the probability of going five years without recurrence was 87%, and the probability of living five years was 73.3% (those numbers seem backwards to me, but it shows that recurrence is not a requirement for breast cancer to kill you). For those "lucky" triple negative women WITHOUT the gene, those percentages dropped to 52% and 53% respectively.

You read that right. Now, the study included women with all stages of cancer, not just early stage. Still, those statistics are telling me that, just like the movie title says, I have a 50-50 chance of making it to my 40th birthday due to the aggressive nature of the type of cancer I was unlucky enough to have. The statistics are also telling me that being BRCA negative is actually a bad thing for women with triple negative breast cancer. This implies that our cancers are feeding on something else entirely, and no one knows what it is. At stage one, almost everyone I encounter assumes I am fine now, I fought off the beast, I will live. But knowing what I have just told you, how would you like those odds?

For years, we have known that black women have a much worse mortality rate for breast cancer. It had been hypothesized that this was due to socioeconomic factors or access to healthcare and screenings. Today, many researchers believe that it is actually because black women are so much more likely to be triple-negative. Because triple negative cancers are often of the highest, most dangerous grade (surprisingly, two of my tumors were only grade 2 on the 1-3 scale, while my one non-invasive, DCIS tumor was grade 3) and are often also of the frightening "basal-like" cell type, they are less understood and much more insidious. They are likely to occur in young women, who are in turn unlikely to receive routine mammograms. They often are caught in late stage and are resistant to many treatments.

Moreover, when thinking about how breast cancers grow, most doctors look at an average. I was told my cancer had been growing for approximately 3-5 years. And yet it seemed to pop up out of nowhere. I have talked to triple negative women who have seen their cancers double in size in the month's time they were waiting for surgery. Many triple negative women can almost feel their tumors growing, but we are told that is impossible. I think it is entirely possible that I had cancer for a year at most, doctors be damned. We are also lumped in with other survivors when told how to manage our cancer. Yes, we can eat tofu, and no, we don't "have" to take tamoxifen, but we are still told to limit alcohol intake, exercise, and eat well. (Shouldn't everyone do those things without feeling like a guilty moment of excess will lead them to an early grave?). However, diet, drink, and overweight are risk factors for ESTROGEN POSITIVE breast cancer. There is evidence that extremely high BMI for post-menopausal women (BMI over 35) is a risk factor for triple negative breast cancer, but no real evidence of "lifestyle" factors that significantly affect triple negative disease exists. After all, I was nursing a baby, hanging out with a BMI around 19, when I was diagnosed.

Much of what everyone knows about breast cancer is largely irrelevant for triple negative cancers. Rumors and misinformation abound. A co-worker whom I recently met who is a 2-year triple negative breast cancer survivor suffering from a recent case of lymphedema was told by her doctor that only black women get the disease. A coworker of Gabe's was told by a friend it was good she was diagnosed now, not seven years ago when she dealt with her triple negative cancer, because her doctors told her to write her will and get her affairs in order.

How much pink goes towards figuring out what the hell is going on here? I was an active, skinny non-drinker nursing a baby when this thing came on. STOP focusing on supposed lifestyle factors, researchers. Something else is going on, something in the environment, or something related to pregnancy, or testosterone levels, but breast cancer is not about being an overweight inactive person. If the pill is a lifestyle factor, I am all for studying that one, since the link to triple negative seems highly relevant. But how much interest do we have as a society in discouraging women from taking the pill? How likely are we to start researching invasive birth control methods for men, or getting over our notion of spontaneity and firmly pushing barrier-based methods? This is a society that cannot deal with women and sexuality, to the point where the only cancer vaccine that has ever been developed is being denied preteen girls because we don't want to think they will go and have sex. Guess who will be getting her Gardisil in a few years? That's right, Lenny. I would rather protect you from sexually transmitted diseases and cancer AND teach you to force guys to use a condom AND enjoy sex when you are ready for it AND respect yourself. You could go your whole life without having sex or start having it at age 14 and I would still love you and want you to live.

It is frustrating to realize that it seems that even with estrogen-positive cancer, the most common type, breast cancer is an entirely different animal for those under 40. For triple negative, the reality is worse. You are forced into extensive, harsh chemotherapy regardless of your stage. Some studies show that that chemo will be extraordinarily effective on your tumors...about 40% of the time. The chance for recurrence is great and misunderstood, and the risk factors are unknown.

When someone asks me if I am in remission, I have no idea what to say. I recently agreed to do a short radio spot about being a breast cancer survivor. The woman interviewing me asked me if I thought I was cancer-free. I have no idea, I said. I have to assume so, until I know otherwise. One of the ROW coaches passed on information on a commercial audition for GE for cancer survivors. One of the first questions was, have you been in remission for at least a year? But really, no breast cancer is truly in remission. It is a type of cancer that can always return. Triple negative is less likely to do so, and as I said, almost entirely unlikely to recur if you make it 8 or 10 years out. In the meantime, you live with that IF, no matter what you do.

I have been very tired recently, peeing all the time, sluggish. I probably have a cold, and my period is due soon, so it could be that too. I might worry about being pregnant if I ever let Gabe anywhere near me without a condom or if I thought it was possible to still get pregnant, despite my so-far regular periods. But I am not your average 36 year old woman with average concerns anymore. I had this thing called triple negative breast cancer, so I have these symptoms and I worry that cancer has spread to my liver. Triple negative is much more likely to spread to the soft tissues, such as the liver, lungs, and brain, than to the bones--which is a terrible fate for women who find they have metastatic disease, and yet is much more treatable in the short term.

Everyone reading this knows I am not a support group person. That is just part of my nature, but another reason for it in this instance is that I find breast cancer groups to be very frustrating, since most of the advice is not relevant for me. I read somewhere that having triple negative breast cancer is like being seated at a separate table at a restaurant, watching other people eat steak while you live on bread and water. And of course it's terrible for anyone to have breast cancer. Early stage triple negative cancer is infinitely preferable to late-stage anything else, but it still makes you feel like an outsider, even in the "club" you never wanted to join.

It is hard knowing that much of what has been gained in understanding breast cancer will not benefit me, even if that sounds selfish. The ACT chemo I did was not designed for triple negative, though taxanes are considered a must, albeit a damn toxic one. No maintenance meds, no real restrictions on pregnancy or birth control method, really a lot of nothing, for us triple negatives. It is better to be free to live my life, in some ways, but daunting too, as I count down these days and see if my aggressive form of cancer decides to morph into something else. This 50-50 thing can make a woman tired.

These are the things I think about when I see pink advertisements for used cars or find the "do this for the cure" taglines everywhere. Here is the reality of decades of pink. According to the American Cancer Society, the mortality rate for women from breast cancer is about 25 per 100,000 today. The rate in 1930?

25 per 100,000.

While they might not get as much hype, mortality rates for women for cervical, uterine, and stomach cancer have reached under 5 per 100,000, down from the high 20s and 30s around the depression. What has all that pink money achieved? How aware are people really, how much do any of us know about breast cancer? I had no idea that triple negative breast cancer existed, and it took me a long time to understand what it meant even when I was diagnosed. Shortly after I showed up to work bald, a ballsy co-worker asked me what kind of breast cancer I had. What do you mean, I asked. Well, you know, there's the breast cancer where you will most likely be fine, and then there's the kind that's really bad, where you don't live very long. Which do you have?

I have the bad kind, jackass. Can I offer you a pink beer to thank you for your support?

Now don't get me wrong, there is one aspect of the pink that even this triple negative girl loves. It gives people who care about you a way to show you, when they are at a loss and don't know what to say. I learned recently that an old friend and colleague I haven't seen in years wears a Komen ribbon for me on racing days and thinks of me and my struggles when he runs. It's always touching for me to learn that, especially touching, somehow, when men feel that way. Someone lives far from you and can't help you out, make you a meal, or watch your kids. Pink gives them something of you to share. It's meaningful, and the love is important.

But there is nothing to love about breast cancer. October was always my favorite month, though it marked one of the darkest times in my life, since I was hit by a car on October 11, 1984. Our October in Chicago this year has been phenomenally beautiful, warm and sunny. But pink culture in October just makes me want to say, how aware are you that as you sit talking to me, I am concerned, rightfully so, that I might not live to see my son enter kindergarten? What pink is there to wash that fear away? It is not paranoia, or a bad attitude, that makes me feel this way. It is the reality of breast cancer, after the pink has been laid bare.

This photograph of Lenny and me was taken on New Years in 2010, about four months before I was diagnosed with triple negative breast cancer. Can you tell that I had cancer then? Where is the cancer in this picture? You might not be able to see it, but it was there all the same, trying its damnedest to do me in. The fact that you can't see it in me today does not mean that it isn't there; the fact that I feel very healthy most of the time does not mean that I am cancer-free. That is the reality of living with an aggressive form of breast cancer. You might call it a downer, I would call it a dose of the truth. So to all the women with breast cancer who are told they look amazing, that they are beautiful and wonderful and talented and smart, I would like to say this: Yes, you are. But this October, I know all too well that you would rather be ugly, lazy, stupid, and useless if it meant you wouldn't have breast cancer. So, this un-pink blog's for you.