1,000 Days of KatyDidCancer

I just sent my husband a text message. I returned home from the gym, changed out of my sweaty clothes, started to put some laundry away. Something was gnawing at my mind. He is with the kids at their gymnastics classes, and I always prepare to put them to bed as soon as they get home after the long, exhausting day that is Wednesday in our family. But something told me I needed to check my blogs, so I did, and then I realized:

Oh my God.

And I texted him:

"Today is my 1,000th day of KatyDidCancer. I have to write tonight."

He might not have seen it yet. He's busy, he's probably throwing juice boxes at kids with one hand and driving the car with the other. When he sees it, he'll know. And he'll put the kids to bed tonight.

This has become a part of our post-cancer routine. Not me not putting the kids to bed; we always took turns with that. THIS. Me writing and people leaving me alone. My kids knowing that one of the things that mommy does is write. What about? Well, it depends. It doesn't matter.

Or does it?

There is a breast cancer study that is making the rounds in the news this week on post-traumatic stress disorder in breast cancer survivors. Most of us who have had the disease just shake our heads and laugh. You think? Yeah, there might be some stress involved in a disease like this one. You might have scanxiety and flashbacks and trouble with cancerversaries and do weird things like cry around teenage boys or picture every single person you see bald or get even more fidgety than normal. Especially because you know that you will never be told that you have achieved "remission," because that doesn't exist for your cancer, so all you can hope for is a long, passionate slow dance with NED.

Cancer will always be there, no matter how long we who have survived it are here. And I mean it will always be RIGHT HERE. It's a part of me now, like everything else that is a part of me. And I can honestly say that I have never had anything like PTSD from this.

You might find that surprising, considering all the keeping it real that I've done on this page. But really--when I hear other women talk about their constant fear of recurrence, their obsession with checking their breasts or chests or skin, their panic and sadness and the ways that their families are falling apart and their partners can't deal, I feel terrible for them. I get it, but I didn't feel it. And here's why:

This.

This blog, this public forum, these words. It's this that's saved me. Well, this, and having early stage disease. My death from cancer is entirely possible, but so far only theoretical. There is no way to overestimate the impact of that truth.

I have had some PTSD in my life, I realize now. That term didn't exist, but I had that after my car accident. I had night terrors for a long time and I changed my behavior and engaged in new rituals to help compartmentalize my fear. That didn't happen because of my temporary disability. In fact, that was relatively easy for me to understand, because I didn't know anyone who had been immobilized by a car accident, and my being in a wheelchair made the whole thing very public, and I couldn't hide it, so I had to just deal with it. However, the need to accept and place my own mortality at nine years old was a little harder to bear. The figures of authority who betrayed me, the fact that they wouldn't let me go to school, and the way life just seemed so impermanent now--that took some time to get over, because I never, ever talked about it. Once I said the words "It's not fair that I could have died and that I'm going to die," I slept peacefully at night. And epilepsy never gave me PTSD; that was something I told everyone about, something I had to fold into my life as I took medication every 8 hours, something that everyone was confronted with when I had a grand mal seizure in front of the entire sixth grade.

And through those experiences, I became a little bit more of myself. I have written a lot lately about issues of sexual abuse and harassment. I have eluded to things I will never write about. And now that I am 37 years old and decades have passed since I had some of those experiences, I realize what was so hard about them, besides the violation, the paranoia they brought on, the thousand little and big betrayals, the way I was forced to question myself and my body and my friends and my decisions. The hardest thing was that I couldn't tell anyone. Every time I tried--and believe me, I tried--the experience was downplayed, or other kids acted "jealous" of the attention I got, or I just felt oddly called out about it, so over time, I stopped talking. I changed things about myself, I avoided situations, I stopped trusting people, and I kept it to myself, and it kind of, well...haunted me.

Cancer has angered me, scared me, worried me and it has changed me in some ways. But in general, it has just become a part of me, and I don't feel altogether different. Breast cancer is an especially hard cancer to have from an emotional perspective, because it is talked about so often, women who don't have the disease live in fear of it, there are so MANY blogs and books and studies about how to deal with it, that it is entirely possible to believe that you are just experiencing this whole mess WRONG. There are a lot of people telling us how to feel, how to behave, and the ubiquity of breast cancer in our culture ironically makes it really hard to actually, you know, HAVE breast cancer. But then, something like KatyDidCancer comes along, and gives one woman the authority over her own experience, and to hell with what anyone else thinks. So maybe KatyDidCancer, or cancer did Katy, but there they are, living in harmony inside that one word.

How did this save me from the ravages of stress and fear and from the haunting? It saved me because cancer is absurd, and surreal, and the treatments are even more so, and writing about that made it real, made the memory last. When traumatic things happen and you don't tell the story, it just stays in your mind until you think maybe you made the whole thing up or maybe it wasn't true or maybe it wasn't so bad. I wrote it as it happened, and saved my sanity and the sanctity of my memories in the process.

So it was cathartic. And it made me feel useful--to hear how my words helped other cancer survivors, to understand that there are people I don't even know who have found some aspect of this story to be inspiring.

But there's the rub--that's it! It's in telling this story. Not the story of cancer. The story of Katy.

I have heard from teenage girls who were changed, and helped, by reading my posts about gender and sexuality. I have heard from men who never get emotional, telling me that they have wept at these words. I have had an impact on people, and that matters, even if it's some perv looking for bald lady porn who gets sent to a breast cancer blog and is forced to think about reality for a minute or two. That is an amazing feeling, as wonderful as learning that one of my daughter's classmates could not stop talking about poetry for an entire week after I visited the class for 35 minutes to do a poetry exercise, and she started asking her mother to get her poetry books at the library.

But none of that is what saved me.

I have been able to literally use cancer, to flip it, to make it work for me, so that I could talk about things I never thought anyone would care about, so that I could write words I always wanted to write--not just about me and my life, but about life with a Capital L. I have written a letter to my daughter and read it in front of a crowd of people, something I could not have imagined doing before cancer, or more aptly, before KatyDidCancer. I have written poems, or shared old poems that no one else had ever read. I have been brought back to myself, the writing part of myself, through this, and that is how Katy has been able to do cancer and stay Katy, without too much of an identity crisis.

Recently, I convinced my daughter to read the book Black Beauty. It was my mother's favorite childhood story. I really don't like horses, so I haven't had any interest in reading it to her. Gabe reads a few pages, and then she reads it herself. I spent about ten minutes in her bedroom the other night talking to her about the book. I showed her that it was published in 1927. I said that was the date THIS ACTUAL BOOK was published, not just the story. When her Meemaw read it, the book was already decades old. Her great-grandmother, who died when Lenny was 4 months old, was 8 years old in 1927, and that's how long that book had been in our family. That is why it was falling apart. She asked me what century that was (20th) and what century this was (21st) and I could see the wheels spinning as she thought about the nature of time. I told her to think about her grandmother reading that story when she was her age, and to realize it was not just the same story, but the same pages, the same smell, the same THING.



I know now that whether I have three years or thirty, 1,000 days or 100,000 days, that my story will still be there. And whether I am young or old when I am gone, someone who loved me, at least one person, because what more can you ask for, really, in this life?--someone among my children, my husband, my mom, my brother, my relatives, my friends, my ex-boyfriends, my co-workers and all those people who don't really know me but know of me through this medium--will say: Remember when Katy used to tell those stories? Remember those words? Remember how she wrote it all down so that one day we could say

Remember?

And some part of me will still be here.

The day after my diagnosis, 999 days ago, I wrote this:

I have never taken my health for granted. After having epilepsy and living through a terrible car accident as a child, I've always been happy with what my body could do. I can walk, drive, swim, deliver babies, and do all kinds of things that other people can't do. Whatever came at me as a kid, I dealt with it. I dealt with smaller things as an adult pretty well too: gallbladder surgery, infertility, cysts in my wrists. I've dodged a lot of bullets and led a happy, mostly healthy life.

I don't want to think my luck has run out. I hope you'll all see me out and about, lopsided, bald, what have you. I plan to try to be a cranky old lady because in a way, that's what I've always wanted. You know, just so the personality can fit the appearance.

It will help me to no end to write this damn blog, even if no one reads it. It's going to be a long road ahead and I'm going to be different at the end.

I was mostly right. I have absolutely been out, lopsided, bald, AND what have you. I am different, but not much different. My luck has not yet run out.

Over the last 37 years, I have lived two lives: as Katy the person, and Katy the body. Katy the body that other people have wanted, other people have hurt, other people have loved, Katy the body that didn't always work, that so often had to fight, that was always separate from Katy the person. And people who think they know me well can say that the relationship between the two Katys is what makes me who I am, and they will be mostly right. But the body will be taken away, and the person will change.

But this?

No one can take this away from me.

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 921: KatyDidCancer Year in Review

Oh 2012, how quickly you've come and gone! And here I am, a young cancer survivor who feels lucky to be getting older, and I know there is so much that I should say, so many poignant statements that I could and probably should make about life and love and family and health and the nature of time.

But I'm not going to do that.

I love writing this blog, but damn, it can get deep. And I'm not really that deep, at least not most of the time. I'm the girl who likes to watch football and makes playlists about bootys and reads People magazine and steals the last swing from some kid at the park so I can use it myself.

So, I'm going to pay homage to some of the people who have helped me keep it light this year, which was easier to do than in 2011 or God help me 2010, but still a bit of a challenge on occasion.

Here's to the people who make the Internet worthwhile, those lost souls who do amazingly awesome Google searches that send them to katydidcancer, which was clearly not what they were looking for, though they chose to read it all the same.

It may be disturbing, but I will always take some kind of misplaced cancer girl pride in all the searches for "hot bald girls," "sexy bald women," "hot skinny bald chicks with scars," (whoa, that's specific!) and "hot naked body" that lead people here, though I'm not exactly sure about that last one. I've put some questionable pics on here, but nothing I would be embarrassed for my family to see. Furthermore, to all those searching for GI Jane, I know you were hoping for Demi Moore, but oops you got me instead! Holla!

And to all the pervs out there who are looking for some online pleasure but have clearly not really learned how to use the Internet, you absolutely deserve to get sent to a cancer blog! Google ain't THAT smart, so if you're searching for "16 year old breasts," "wife undressing," "nice nipples," "my first time," or Jesus Christ, "corrupting virgins," you might get better results if YOU GOT THE HELL OFF OF GOOGLE. And it kind of seems redundant to search for "naked vagina," unless you are a 10 year old boy and you don't know what else to type in, and then I feel really, really bad that you got sent to a breast cancer blog because that will be more traumatizing to you than what you were hoping to find.

And I don't even know where to begin with "breast vacuum." Yikes.

And while not necessarily "light," I love seeing the searches from people whom I assume were recently diagnosed with cancer but who do not engage in the typical, clinical searches. By far the most read post of mine is First Post Chemo Haircut, because there are literally hundreds of people, women, I assume, who go into google and type "first post chemo haircut," "haircuts after chemo" or something almost exactly like that. They are probably the more normal, run of the mill cancer survivors, right? Then there are the folks who think about things like this:

"Chemo ennui." "pole dancing fitness for breast cancer survivors." And my personal favorite: "Cancer, I'm sorry...you suck." Can I get an amen?

And I DEFINITELY need an Amen for "pimps with cancer."

Word.

To all those who were looking for useful information online, I'm glad that I could serve as a PSA of sorts. Because someone has to help those dudes who are looking up "vasectomy shave" and "shaving my balls."

A big thank you to those who remind me that I can't be that boring of a person, because if I was, no one doing the following searches would possibly be sent to a blog about my life: "son wearing sister's clothes," "me in a body cast," and the ever-so-obvious "pullups in prison."

To those with existential crises, I salute you: "How long is 642 days?" "places to go." and "I feel like I'm doing everything halfway."

Some problems are bigger than Google.

And some are too specific for the Internet Gods to handle, methinks: "my girlfriend is running away with the circus." "is kissing ungodly?"

and finally...this. This search, which actually led to a post in my other blog, one written about my wedding, of all things:

"how to O and get your brother's girlfriend to look at your penis."

Ain't a search engine on God's green earth that could help that guy.

So thank you to those who read my blogs, and thank you to those who just make me smile. After all, if no one had ever googled "live chicken on six," and then read the really deep and insightful cancer post he was sent to, I wouldn't have a second blog at all.

So here's to 2013. May we all live through it, and love through it, and laugh through it. Nothing much else we can do!

Day 858: Disaster Drills

I haven't had anything to post about in a while, and then I started thinking about something small, and I figured I could write about that, but then I wondered why anyone would be interested in reading about my small stuff. I mean, right now, there is this massively disastrous storm literally brewing over the eastern half of the country. Everything seems to be at a standstill: the election, the financial markets, travel, communication. It brings me back to that surreal day in 2000 when the power went out in the Loop. Obviously that wasn't a disaster and wasn't on a scale that even approaches this, but I remember so vividly how everyone walked around in a daze, wondering at the big city with no lights. I remember Mayor Daley's purple face on the news the next day, his rage so unfettered and real. I remember being one of the only people riding the El home, because I knew that the CTA had its own power supply and that I wouldn't be stranded on the train. I knew the buses would take forever with no streetlights. It is, oddly, one of my favorite memories of Chicago.

This storm, this Sandy, is obviously something else entirely. It is the thing everyone is talking about, the thing that matters for us right now. These are the types of disasters that keep everyone in rapt attention, including me. But there's something else I feel about them as well: fascination.

No, I'm not a weather geek. That's my daughter. She tells me every morning, after reading the weather page in the newspaper, about various random weather facts: what time the sun will rise (mom! it's going to rise at the exact same time that the bus leaves for school! isn't that cool? Um, sure, honey...), what the weather is like where various relatives and friends live, the records that have been set, the types of clouds.

It's hilarious to have a little meteorologist in the house, but that's not what gets me about these things.

I am completely fascinated by the human element; not just the suffering that I hope people don't have to endure in too great a measure, but the social aspect.

What does that mean? Well, some of you know that I have a masters degree in urban planning and policy. I've never actually planned urbans; my career has rather been very policy-based, but the whole notion of what happens with social norms in an extreme event, and how human beings manage large institutions, is fascinating to me. So they are evacuating large parts of Manhattan and other big cities on the east coast...at the same time that they are closing roads and shutting down all forms of transportation. Now I am not saying that those are bad decisions. I'm just SO CURIOUS about how everything will turn out, how folks will try to make order out of chaos if it comes down to that. Because usually, that is exactly what most people do. People WANT order. A few of the proverbial bad apples might loot, or cause mayhem, but for the most part people do band together and try to find their way out of the mess. And I sit there and wonder...why? And how?

I read all the books about major disasters--shipwrecks, factory fires, floods, you name it. The parts I find most interesting have to do with arcane things like codes, or the lack thereof, or how such events led to stronger labor laws, or tidbits about why Chicago is one of the only places in the world to have so many buildings made of blonde brick. Of course the human interest aspects touch me, and who could not feel pain in the face of such tragedy?

But something about what comes out of it is just almost thrilling to me, no matter how strange that sounds. I guess everyone reading this knows that I'm not a normal person by now anyway. I'm that girl who knows all about how payment systems failed following Hurricane Katrina, the one who went by herself, while pregnant, to see a movie about how black communities were decimated from a cultural standpoint (huge amounts of lost jazz photos, public squares that served as community centers and were never re-opened, musical communities that were lost forever) from the same event. I'm the one who chooses books about genocide for book club. There are reasons for this that come out of some very strange and specific aspects of my upbringing; the details are related to a rather involved family history as well, and it is too complicated to get into here. The point is that I seek out information about these kinds of hells on earth.

Hell, I do this even when it doesn't make sense for me to focus on the macabre. When I was in the hospital suffering from that damn chemo-related temporary heart condition, I got a phone call from a friend in Seattle. She might have been the only person who wasn't related to me who called me. And she wanted to let me know that she had seen a book in the store that made her think of me, and she was going to send it to me, because she thought it would make me feel better.

It was about reconciliation policies in Rwanda.

I shouldn't have been surprised. We used to go to the beach together and lay there sunbathing while reading books like that. And of course she was right--that was just what I needed. I feel a very strong desire to find out about things that are very disturbing, because I feel that we fail each other if we do not bring them to light.

I have not been shy about admitting to my social justice-orientation to the world. What's strange is how I think about it all the time--justice with a big J. Justice from a human rights perspective--that's really what I should have focused on in my career. In a way, I did, as financial justice is one part of the whole. But sometimes I look at the state of women in the world, or just in my own backyard, and I can't believe that I don't do something related to that for a living. I think about slavery--current-day slavery in addition to all the different past iterations of the same. I know more about every genocide that has ever happened than most sane people would care to even contemplate, and then I sit there at night and am haunted by thoughts like this:

What about all the genocides from throughout history that were truly successful? The ones that wiped populations out so completely that we don't even know that they ever existed?

And then I think, now, why would anyone want to read what I have to say about my life, which is so small? On the one hand, I write about the disturbing things that many people don't like to give voice to in relation to cancer, disability, sexuality, and even death. On the other, well, my life is pretty damn good. And even when it's hard, or has been hard, in some ways, I've been prepared for it. I've been giving myself disaster drills my whole life, wondering when the other shoe was going to drop and what I would replace it with, looking over my shoulder and wondering where the getaway car was, modifying things, cheating death.

And yet I have never been very serious, except maybe here. I'm just too inherently content, albeit pissed off, most of the time. So my mind is filled with this big stuff, and sometimes my life is filled with this small stuff.

What I was going to write about was this: This weekend, Gabe and I went to the wedding of his oldest friend. We went to lots of weddings about 7 years or so ago; we got married 8 years ago and were one of the first among our group of friends to do so. But now we're at the point where people are getting divorced, not married. So I don't often have an occasion to dress up too much. It took me a while to pick out a dress, even though I have a lot of cute ones.

Gabe helped me decide on a fairly slinky black number. I remember very well the last time I wore that dress. It was actually for the last wedding we attended--about two and a half years ago, exactly four days after my cancer diagnosis. Before the wedding, we took this picture that turned into one of Gabe's all-time favorite pictures of me. Later, we did a split-screen shot of that picture with one he took of me right after he bic'd my head, so that he could show me that I looked the same (I didn't see it then--though I do see it now). And I was just so lost, so grieved, so unsure of what my future would hold or if I would even have much of a future. I cried at the wedding, I cried after the wedding, I was sad about everything. I could hardly eat my chicken shwarma after we left the reception because I just couldn't talk to people. My husband held me while I cried in the restaurant, and the woman behind the counter pretended not to notice. The next day, I wrote what turned into what I still consider to be one of the saddest, most difficult-to-read blogs in the two and a half year history of this thing. It was my first Mother's Day post.

And then...this year, I put the dress on, didn't bother putting on a bra, planned to wear bare legs with my heels until one and a half of my toenails decided to finally fall off (two years post chemo! the gift that keeps on giving!), decided to put on fishnets instead, slicked back my hair, put long dangly earrings in my newly-pierced ears that haven't healed correctly, and let Gabe take the wheel for the long drive.

The ceremony was very simple and touching. I teared up a bit, thought about beginnings rather than endings, and smiled. We had time to kill before the reception. We went to a few shops in the suburban downtown, then went to the bookstore. We could have gone to a bar, I suppose, but I guess we're nerds. Then we headed over to the reception; Gabe knew some people, though I really didn't know anyone else.

And I didn't care.

Damn did we have a good time! So much food and drink, and new people to meet. And then...the dancing. Now. Gabe is one of those people who claps on one and three. He has NO rhythm. And while I DO have rhythm, I haven't been much of a dancer for years, for some reason I don't really understand myself. I used to go clubbing in high school (all ages night--a euphemism for underage girls welcome so grown men can try to get with them!) and in college, at least for my first year or so. At some point I became more self conscious; I didn't like getting any attention at clubs, and I didn't dance as much. For years I dated a man who danced with me in the kitchen of my apartment. We were too broke to go to the club, and that was more fun anyway. Gabe and I took some ballroom dance lessons when we first got married, and mostly it just made us frustrated.

So no one was as surprised as I was when we spent hours on the dance floor together, Gabe enthusiastically showing the world about his lack of rhythm and his love for me, and me dancing for real for a change. I laughed at him, he laughed at himself. He bumped into people and sometimes turned me the wrong way. We were one of those cheesy lovey dovey couples that annoys people most of the time, except at weddings, where it's ok.

That was it--I was going to write about that. About that moment I couldn't see two and a half years ago when I went to a wedding wearing a tight black dress, when I would be happy, when I would weigh a few pounds more because I wasn't too anxious and terrified to eat, when my hair was pointless, and I wasn't thinking about the death part of till death do us part and I could look back and know that when illness and suffering happened, we would make it through.

It just doesn't seem that important, though. Life is both a tragedy and a comedy. It is big and small. There is always something more joyous happening somewhere else, and something more horrifying. The horrifying is the only one worth worrying about, because it can provide some perspective and help us to help others through the world. And life is also, for me, a story.

Some wonderful stories are born of real tragedy. And you all know that I read the last line first, lest I don't make it to the end. This is why I sometimes don't know why I say things, because what I wanted to say has already been said, often so well that it isn't worth trying to beat:

the last lines of The Bridge of San Luis Rey by Thornton Wilder:

But soon we shall die and all memory of those five will have left the earth, and we ourselves shall be loved for a while and forgotten. But the love will have been enough; all those impulses of love return to the love that made them. Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.

Day 733: Pass the Mic: Listen to Your Mother Chicago, 2012

Before I get deep into describing the experience of last night's Listen to Your Mother performance, I'm going to give a shout out to Adam Yauch. I am old enough to have seen many celebrities of my youth die--usually of things like drug overdoses, alcohol poisoning, suicide, plane crashes, or gunshots. I can't remember any other famous person who holds a place in my memory dying of something as ordinary and sad as a rare cancer (of the salivary gland).

In high school, there were just a handful of current bands I gave a damn about, including A Tribe Called Quest, the Chili Peppers, Fishbone, and the Beastie Boys. We did all kinds of things we weren't supposed to do while listening to those albums--Check Your Head, Paul's Boutique--in a time when hip-hop artists played instruments, swore rarely, and wrote songs that were too long to play on the radio. Back in the day when we had radios. Back in the day when we didn't share those things we weren't supposed to be doing with anyone. Back in the day when we kept journals or just kept it to ourselves. And as I reminisce about those times, I wonder how those tired cancer arguments could possibly apply here. What...not enough attitude, moxie, will, talent? According to Dr. Richard Smith, the director of the Head and Neck Cancer Program at Montefiore Einstein Center for Cancer Care, this type of cancer is "Just bad luck: not linked to alcohol abuse or smoking or HPV." And who are we to assume those things in the first place? Could the purchase of purple merchandise somehow have saved MCA?

Actin like life is a big commercial.

I'm sorry that MCA died from cancer when he was only 47. But I am so glad that for maybe the only time in my life, I got to follow his advice last night and...

Pass the mic.

Chicago listened to its mother last night, and the show was just magical.

I think the audience thought that as well, but that's not what I mean. We all did a great job, everyone sounded and looked wonderful, but that's not what I mean.

It was just a magical experience for me.

It's hard for me to describe why this meant so much to me, and I think to everyone else who was a part of it. I'm going to try to capture the things that I will always remember, and think of, about standing up on a stage and reading something that I had written in front of a bunch of people. I won't be able to do it justice, but it's my blog, so I get to try.

Listen to Your Mother Chicago 2012: I will always remember:

...how indescribably nervous I was during the audition. I had never read any of my blogs aloud to anyone before, and I had never done a real audition for anything before either. When Melisa told me my piece was beautiful, I assumed she said that because it was, in part, about cancer. It was so gratifying to learn that isn't what she meant at all.

...our first rehearsal, when I realized that a lot of the cast members knew each other, and I didn't know anyone. That is when I started to learn about this blogging community that I didn't know existed. Though I have been writing a blog for two years, in some ways, I don't know anything about what blogging really is. I don't follow blogs, or go to conferences. Shit, I don't even have twitter (or is it "a twitter?" hell if I know). It's been really interesting for me to see how supportive everyone is of one another.

...our second rehearsal, when everyone in the room just cried and cried during and after my piece and Tracey had a hard time even introducing Judy, who was reading after me. I know my blog makes Gabe cry, but before that moment I had no idea that it had the power to touch people who don't even know me that well. Not being overly emotional myself, I didn't quite know what to make of that. And again, I thought it was probably a little bit because of the whole cancer thing...but not entirely. I guess I have figured out a way to write the things I am too lighthearted to say out loud.

...how meaningful it's been for me to know these people who know me because I am a writer. When I was a kid, my friends knew to fold "writer" into their understanding of me as a person. I was sardonic, and swore a lot, and liked to watch sports and wasn't into girly things (well, except maybe shoes), and I was pretty lighthearted, but I could write intense poetry and prose too, and, well, that was just Katy. One of my friends from high school wrote me an email recently and said, "Did people really pay that much attention to your hair? I never really thought about it. When people ask me about you, the first thing I say is, oh, she's quite a good writer." But as an adult, people I have befriended have known me because of work, or kids, or something else. Anything I've written I have kept to myself, outside of what I write here. So these words come as quite a shock to some people who do not envision me writing them. And then, I met a group of people who didn't know any different, and saw this as just a part of me like all the other things they were getting to know about me. It's brought me back to myself, the way I really see myself. I will always be grateful for that, even if I stop writing this blog soon, which is something I assumed I would have done by now, but haven't yet gotten around to doing.

...that no matter what, my analogies are always a little bit off. When we walked into the theater for the first time yesterday, we all said...wow. Now, the Biograph/Victory Gardens Theater is not intimidating at all, and it seats just 300 people, but we were all acknowledging that this was real, we were really doing this thing. And so of course I said: "This is like in Hoosiers, when the kids walk into the big stadium for the first time." Thank God for the few women who understood my reference--or at least pretended to-- of a 1980s high school basketball movie.

...that after the show was over and we met in the dressing room, I thought of Hoosiers again, and I wanted to say "I love you guys," but I'm neither corny nor Gene Hackman, so I didn't.

...how I felt like I would crawl out of my skin with nervousness waiting for my turn on stage. I was third to last. But time seemed to fly by, and when Melisa said my name, I walked onto the stage, and...

...I did it. I didn't need to look down, since I had memorized the piece. I didn't forget anything, or fumble. I couldn't see my family, even though I had saved seats for them, because the lights were too bright to see past the second row. And yet, that helped me, as it didn't really seem all that different from reading the piece out loud in my living room. I know that it is an understatement to call my reading style "understated," and yet, people laughed at the right points. I heard all the sniffling and crying. I pointed in the general direction of where I thought Lenny was sitting at the end. And so, I did it.

...that the first thing Gabe said to me afterwards was that someone had cat-called me as I walked onto the stage. He sounded indignant at first, saying that as I walked up a guy right behind him said "aww yeah," and he wanted to slug him and say that's my wife! I didn't believe this story at all until one of our friends confirmed it. Being a guy, Gabe ultimately decided to be proud of this. Being Gabe, his pride was perhaps misplaced: "Hey...I picked that dress!"

...how my friends and family came looking for me, and I was so pleased to see everyone but also so distracted, because the only person I really wanted to see was my daughter.

...that I got to do something few parents ever get to do. While I am still alive, and presumably healthy, I stood up in front of a room full of people and told my firstborn child how much I love her, in spite of my imperfections and the bullshit that we have gone through as a family. I told her what I think of her as a person, and how much I hope that I get to see her become more of that person as she grows up. I told her that I don't want to die and that knowing her has made living even more important to me. In five minutes, I said just about everything that I think I would want to say to her, whether I had all the time in the world or whether my time was up.

...how she cried. She cried when I hugged her, and I thought it was because she was traumatized by what I had said, and Gabe thought she was just hungry. Now I realize she was tired and overwhelmed and really, really shy...because everyone in that damn theater knew who she was by name and it was too much for her at that minute. She was the only small child in the audience, so people were looking at her, nodding, knowing she was Lenny and knowing what that meant.

...how she looked when we went to pick her up at my mom's house after we went out for a drink with the cast. She was so completely asleep that she didn't move when Gabe took her in his arms, just like she was a baby, and carried her to the car.

...that everyone told me that Lenny would always remember this night, and that I agreed, all the while knowing that I didn't do this for her at all, I did it for me. Parenthood is a selfish, selfish, beast, but sometimes it makes us do the right thing in spite of ourselves. I will never regret having my six year old daughter in the audience last night.

...how my heart caught in my throat when I got home and realized it was really over, and how I realized that part of the reason that hit me so hard was that I now had nothing else to distract me from my anxiety over tomorrow's mammogram.

...the way we all--the cast, the producers--talked about "next year." We discussed which pieces to choose, what venue to use, whether the show should move to two nights as opposed to one. And, because we are adults, we did this in the most postmodern way we could. As parents, we know that there are moments that are incredible, but that will never be repeated. We are able to look back at the entire process that led to those moments and appreciate them, somewhat mournfully acknowledging their inevitably quick passing. We talk about next year because most of us know that we will never do anything like this ever again in our lives, and by speaking of it casually like it could happen again, we are admitting just how much this specific moment in time has affected us.

...that one of the joys of parenthood is that you get to take moments to heart that you don't even witness yourself. My stepfather told me that as they waited in the elevator in the parking garage after the show, people were looking at my daughter. So my mom said, "This is Lenny." And everyone else said "We know that. She IS beautiful."

In more ways than you could ever know.

Thank you to everyone who came to see the show, to every single cast member, and to the producers for giving me an opportunity that went way beyond giving an outlet for my voice. You helped me say something to my daughter that I could not otherwise say.

I love you guys.

Day 666 (spooky!): Listen To Your Mother, Chicago!

Wow! I am so excited that I really don’t know how to write this blog. But I won’t let that stop me! I did something a little (ok, light years) outside of my comfort zone recently, and decided to audition for a show called Listen to Your Mother, which showcases performers reading original work about motherhood. It started in Madison, WI, in 2010, and expanded to a bunch of cities last year; it will be performed in 10 cities in 2012. AND I WILL BE IN THE INAUGURAL CAST OF LISTEN TO YOUR MOTHER CHICAGO.

Can I get a WHAT?! That’s right! Me, on a stage! The show will take place on Sunday, May 6, at a downtown theater in Chicago. I heard about this opportunity from an old friend and colleague on Facebook and decided what the hell, sent an email without allowing myself to think about it, and asked for an audition. The auditions were on a first come first served basis. I got one, and then I thought:

What have I done?

I mean, I HATE reading my creative writing in public. I always have. This audition would require me to reduce one of my insufferably long blogs to five minutes or less in spoken words, and I would have to, you know, read it--in front of people. It would even involve eye contact, and the potential for public emotion.

If you ask me to discuss global payment systems in front of an audience of hundreds of people who have higher levels of education and income than me (academics, CEOs, you know what I’m saying), I have no problems doing this. I can even be funny, and self-deprecating, and interesting. I will be nervous for maybe thirty seconds beforehand, and then just totally rock it out. I can do youtube videos about boring economic topics as if they were going out of style (which should never happen, because they are actually more relevant than most of youtube). But just don’t ask me to do PERSONAL things in public.

I’ve said it before in this blog: I don’t do that. I watch at karaoke, I don’t sing. I’m not a big fan of PDA, no matter how much time I’ve had to spend removing Gabe’s or some other man’s hand from my ass. I disallowed toasts at my own wedding because I didn’t want to hear people talk about us. I would rather the attention was placed on my children, my mom, the furniture, than on me.

And I NEVER read my personal writing out loud. I’ve always been this way. I won a decent amount of poetry and other literary awards in school—grade school through college--and I would always be asked to do a reading as part of accepting the award. So I would do it, somewhat quietly, hating it all the time. People could tell me I did well, that I have a nice voice, or something else, and I would just feel sick. I have always walked away when someone was reading one of my poems. It is only after nearly a decade together that I can let Gabe read a poem of mine when he’s in my presence. He often leaves the room to read this blog, because he almost always cries. I am kind of an awkward person around crying, even with my own children. So it’s for the best.

It just feels too personal, too intrusive, to read these rambling thoughts out loud. I can write about anything here in cyberspace without ever having to confront the reality that someone who is a real, actual person, is reading it. At the same time, I didn’t really come by this blogging thing honestly. My reasons for blogging are really inherently selfish, and strange. I am not a normal blogger. I did not do this to be heard, to unleash my voice, to engage in a community, or even to share my experiences. I did this because I had cancer, and I couldn’t bear to pick up the phone and talk to anyone. I was scared and mystified and I was trying to save my close loved ones from having to have painful conversations. I can’t count the number of times in the early days when I would overhear Gabe saying, “I can’t talk about it. Just read the blog.”

So it served its purpose, and then it just morphed. At first, it was cancer therapy for me, albeit cheaper and a lot closer to home. I said things here that I wouldn’t have said to an actual person, because I have that tough-Katy persona and I don’t like to admit to my weaknesses. The blog was very meaningful for me as I saw how people supported me through everything, when they weren’t close by or didn’t know what to say. It helped me feel the love, you know? And then I got a little political with it, as I began to feel that we have framed breast cancer in an injurious way as a society, so I used this medium to speak out against that. I decided to say things I didn’t hear a lot of other people saying, and I put pictures on here that I know have been at times disturbing. Sometimes, ironically, this blog has made me feel isolated, as I was stuck in cancer-land, overwhelmed by my life, and people were somewhat afraid of me, so they sought me out in virtual ways while I lived my physical life in a very small circle.

And then at some point, I began to do this because it made me feel better—not to talk about cancer, but to write words that left the complicated stratosphere of my brain. I have thought about stopping this blog so many times, wondering what there is left to say. It seems lacking in purpose, self-aggrandizing. And yet… here I was saying I would read it in front of people, with the ultimate intention of reading it in front of a lot of people, on a stage, in a theater in Chicago.

God was I nervous before the audition. My family did not understand this. You wrote those words, Katy, you own this. You’ve had much worse things to be nervous about. Well, yes. I hear you. It is much worse to be nervous for 24 hours while you wait for the results of your core needle biopsy (women talk about those as if it’s a single procedure. Let me state, on the record, that when I had that done, they did not one but seven. SEVEN needles as thick as your finger in my breast). Waiting two weeks for BRCA results leaves you wringing your hands a bit. Having nightmares about shaving your head, feeling your heart explode out of your chest as you close your eyes and hand over your arm for a poisonous cocktail that will have effects you can’t even imagine, all of that is difficult on the nerves.

I’ve done big things—gotten married, delivered babies after months of nerve-wracking pregnancies, decided to put myself through graduate school and buy a condo at the same time when I was single, working full time at one job and part time at another and essentially flat broke. I’ve had huge fights with my husband, walked away from people I loved so much it was like they were a part of my body, held my breath when my children hurt themselves until I could see the final result. All of those things made me jumpy, maybe even a little bit crazy.

But just because life has happened to you and it has been difficult, that doesn’t lessen the impact of other things. Cancer-related nerves are in a category of their own and are steeped in terror and sadness. It’s not fair to compare the nervousness of waiting for chemotherapy with the nervousness of an audition. Just because one is worse, doesn’t mean the other isn’t real. So this was just me, nervous about reading something personal in front of three women in a coffee shop. In the scheme of things, it was not a big deal—but at the time, it was a very big deal to me. I am not a theatrical person. I have never done any stage work. When I read something, I read it with little affectation, as if I am holding a regular conversation with you. This does not seem particularly interesting to me. I practiced at home and thought, who wants to hear that? And then I thought, well, I can think of a few people. They might be too young to sit in an audience in a big city show, but didn’t you write this for them?

I knew what piece I would choose right away, and I knew I would have to make it much shorter and more succinct in message. I figured I would never get chosen, but I could print the piece off and use it as a present to be read when the kids were older. So when I practiced, I pretended I was reading to them.

I got to the audition early, as Gabe decided to drive me and take the kids to the lakefront to run around, something they don’t usually get to do, given how far our neighborhood is from the water. The woman who was looking for LTYM folks kept thinking the next person was me, but several women were brought back before it was my turn.

But your turn always rolls around, doesn’t it? Even if you don’t want it to, it always does. So I stood there, and cut to the chase, and read it. I knew that the subject matter would catch the small audience by surprise, and I knew they would act as if it didn’t. I stumbled a few times. I finished. One woman told me it was beautiful. Of course she did—I just admitted to three total strangers that I had cancer and talked about being afraid that I wouldn’t see my kids grow up; what else is there to say?

I was done, and I was relieved. I was proud of myself for doing something so outside of my comfort zone. My stepfather asked me why I was doing the audition, and I told him how I found out about it. No, that’s not what I asked you. Why are you doing it? My mom asked me something similar: What is this thing you’re doing, what is it for? And I didn’t know how to respond. Why have I ever done anything? I told you, I just hit send on the email and then I had to go through with it. It’s like getting married or taking a job or having a kid or buying cereal or spinning when you don’t know how to ride a regular bike or picking out your clothes for the day. I don’t know why, or what the process is behind these decisions. I did this audition and told myself I was glad I did it, even though I wouldn’t get picked, because I might have regretted it if I didn’t do it. Those closest to me told me it would be a great experience for me to just try, and that’s what I did—tried for something I knew I couldn’t do.

Or so I thought. I guess I did a good job, because I was cast in the show. The email that provided me with this news included some really nice comments about my reading, which surprised me. So good God—I have to do it AGAIN. A bunch of times—rehearsals, the show. More people. A stage. The potential for crying. Jesus. Now I am REALLY nervous, and excited. A little proud even. Kind of wondering what the hell I was thinking. It’s only one show though, and as Gabe said, well, you can do anything once.

Baby, I said, sometimes you can do things multiple times that you thought would kill you to do once. So yeah, I can do it. And if I don’t make it out of this mess, my kids can read this blog, and know I loved them, and also know that I was willing to talk about how much I love them in front of a lot of strangers, which is the last kind of thing their small, stoic, unsentimental mom was ever apt to do.

The show is on May 6, two days after I will acknowledge (celebrate seems like the wrong word) my 2 year cancerversary. That isn’t technically two years NED for me; that will be June 4, two years from the day when I had the cancer removed. But May 4 was D Day for me in 2010 (Diagnosis day), and every cancer survivor I’ve ever met starts the countdown on that day. And on May 8 I will have my next mammogram; if all goes well, I can go to yearly scans rather than every six months, which seems hard to believe. I guess I can tell myself that when I’m going completely insane, driving Gabe nuts and being out of control with nervousness for several weeks before the May 8 scan (because that happens every time), that it’s just stage fright. And in some kind of irony, or fortuitousness, or something, LTYM Chicago will donate some of the proceeds of ticket sales to Bright Pink, a nonprofit that seeks to provide resources to young women diagnosed with breast cancer. Can I get another WHAT?!

The real question is, with all of the emotional things happening around the beginning of May (including the breast cancer walk that will progress directly in front of my new house on Mother’s Day), how will I actually get other things done? You know, like my job, and raising my kids, and housework? This should get pretty interesting.

I’ve decided that if I ever turn this blog into a book (as everyone says I should do, though I have no real interest in promoting myself or turning this into, you know…WORK), I know what I’ll call it:

Curveball.

Life has sure thrown me a few of those. Some I’ve caught, some I’ve dodged, some have hit me square in the face. Some I’ve thrown back. I guess this is one of those, this fact of me going up on a stage to give some strangers a very short glimpse into this strange little life. So take that, breast cancer. Right back at ya.

Day 494: The Kiss and the Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

Day 295: We're Off to See the Wizard

Sometimes when I sit down to write this weekly blog, I wonder how in the hell there can be anything left to say. There's no news on the cancer front, which is positive I suppose, and no really strange things have happened in the past week. Unless you count yesterday, when I was walking back to work after having lunch with a friend whom I haven't seen in about two years, as she was in town visiting. Out of nowhere, a guy who looked relatively normal put his hand on my head and quickly swiped it up as he was walking past me, all without saying a word or looking directly at me. This is hard to explain in words, and it was hard to explain to Gabe why this disturbed me--outside of this general theme wherein I don't like to be touched by strangers--until I said "it was like a scalping motion."

So that was disturbing. I'm not sure how that's related to cancer, though it makes me think I still look strange or these things wouldn't happen. I started to feel better about my overall ability to blend in after that weird experience at the bar that I wrote about in the last blog. When I went to vote, the woman at the polling place looked at my I.D. (the picture was taken maybe a week before Augie was born--I look huge!) and said "Hair's gone, huh?" I was about to say something along the lines of yes, I know, this wasn't my choice, when she went on: "Getting ready for the summer! I don't blame you! I'm sick of this winter." Then a waitress at a restaurant up north who knows what I used to look like but doesn't know I had cancer told me "that haircut looks really cute on you!" So perhaps I'm not such an obvious Cancer Girl as I thought.

I have been thinking about cancer not from my own perspective recently, but rather from other people's. Lenny has been asking a lot of questions about whether things happened "before we knew you had cancer." I always answer her honestly and then I say, but why does that matter? She never explains. It makes me wonder how different I am, how different I look, and what that means to my kids. I was looking for pictures of us before we were married so that I could show Lenny that I was not really that different even before she was born. I only found a few photos. There's a huge gap in the digital photo library between right after Gabe and I met in early 2003 and when we went to visit my brother in Hungary in 2005 8 months after we married. I think the photos just haven't been organized.

So I found this picture of me in a swimsuit, taken two months after Gabe and I met when we went to Baraboo, WI, for the weekend for his birthday. This was supposedly the trip when Gabe realized he wanted to marry me, though luckily for us he didn't say so because that would have freaked me out so early in the relationship. It had something to do with me being a nerd. The story goes that I was looking at the sunset and instead of saying something romantic, I asked him if he thought it was weird that the sun looks like it is moving down in the sky when really we are spinning away from the sun. Apparently this is the type of thing he wanted to say but didn't because he thought I would make fun of him. So when I said it, he knew he would ask me to marry him one day. About 8 months later, he did. Eight months after that, we got married.

Anyhow, I was getting ready for water aerobics right after finding this picture last night so I posed like the picture and had Gabe splice them together. The idea was to show that mommy is still mommy, pre and post-cancer. However, I didn't show Lenny, even though Gabe said, wow! you look the same! Because truthfully, I just don't see it. When I look at this picture, I think, huh. Those look like two totally different people. I was 27 in that yellow suit, I'm 35 in the blue one. I've had two kids in the meantime and a lot of life has happened. But that's not it. I just look completely different to myself. Looking at that young woman on the beach, I think, she can't see yet how life will change! She doesn't know that in just a few years she will get pregnant for the first time, but she will also have cells start to mutate in her body that will lead her on a path no one wants to go down. She is, quite frankly, someone else.

And it's this ability to separate myself from myself that leads me to think about technology, about this particular format that I have chosen as my own kind of selfish therapy. This computer is like my own little wizard, bringing this strange experience of mine into other people's consciousness at the same time that it brings me a little bit closer, somehow, to myself. It is because I write this blog that I don't feel that I need support groups or therapy. I can give voice to things that I would never say out loud, even if I was paying someone to listen. And because it is public, other people know I've said it, so it must be true. It's immensely helpful in that way, though as I've said, it's alienating too. Or maybe it's just cancer that's alienating, not the fact that I talk about it. It does seem like people talk to me and interact with me more now than when I was in the throes of chemo and I was miserable and looked scary, or if not scary, then at least bald.

While cancer is hard for those who are witnesses to it, I still contend it's infinitely harder for those who actually have it. There is so much to take in, so many decisions to make. Every aspect of it is overwhelming and it is so important to feel that you have information at your disposal. In fact, cancer is one of the more isolating diseases in modern times, due to the huge fear factor associated with it. And yet doctors all tell you right after diagnosis not to read, not to go online, to avoid the Internet.

These people have got to be kidding. On the one hand, I understand the sentiment. I would have never known that triple negative was "bad" if I hadn't looked online, because at Northwestern they focus on stage and grade, not type, when telling you about your chances of recurrence and survival. It might have been better not to know about the rare and aggressive nature of my type of cancer. On the other hand, no one told me much of anything, and I was desperately searching for answers. I have done so many convoluted google searches that I wish I had kept track of them.

I didn't do that, but I can discuss some of the searches that people have done that led them here. I know I've mentioned a few of these before, but I want to spend a little more time on the loaded word "searching" in this week's blog. I'm especially fascinated by the very general searches ("lumpectomy blog," "blog+lumpectomy," "bald woman") that lead folks here.

Why is this interesting? Well, I don't show up in the first 100 hits, or maybe even 500 hits--I didn't check that far. And I only see these search terms in my blog stats if someone actually views a page of my blog through the search. That either means that someone is looking for something very specific and is hell-bent to go through a lot of sites to find it, or it means that someone is spending hours looking through all the sites, poring over the words, trying to understand what she has learned about herself and her new life. Either way, it makes me think about cancer as something that even I experience outside of myself, in this new world, out in the ether. Something that is so personal, so emotionally and physically damaging, is also experienced virtually. I find that interesting.

These searches make me think about the people behind them, and they bring out different emotions in me. There are those that make me feel proud, that make it seem worth writing about something terrible if it helps someone else understand what is in store, at the same time that they anger me because it should be doctors who answer these questions, not cancer survivors:

"can thin small breasted women have a lumpectomy"
"how soon do you wake up after lumpectomy"
"does being thin affect radiation for breast cancer";

There are the image searches, which inevitably lead people to my GI Jane blog (the picture of me in the Meg Ryan wig I never wore more than a handful of times is especially popular in Germany):

"chemo shave"
"bald women with cancer";

There is the one that makes me want to shake the hand of the person searching:

"what to say to someone who is having lumpectomy surgery";

There's the one that I would like to send to my oncologist as proof that I am indeed not a "spurious result:"

"paclitaxel heart palpitations the next day";

There are searches that make me want to say, in all sincerity, good for you! Until I realize that the woman writing must have been putting these words into google because the result she experienced, however welcome, was still unexpected and confusing:

"after my lumpectomy I felt great and had lots of energy";

There are even some that make me want to contact the person searching and tell her to find a new doctor:

"lumpectomy arm has IV needle";

There's the one that makes me laugh, that tells me that either the person was specifically looking for my blog and forgot the URL, or he or she is my secret soulmate and Gabe had better watch out:

"It's all over but the shoutin' cancer";

There are those that almost make my heart stop as I remember so clearly what it was like to go through these things:

"waiting for BRCA results;"
"felt like such a fake" (that is such a general sentiment that I don't understand how it led to my blog, and yet there is nothing truer than those words when I think about myself wearing a wig);

There is my all time personal favorite:

"How to look amazing in just one week!" (this search led to my "Just one week later" blog after radiation was finished, when I looked like hell with no eyebrows and chicken little hair. I like to tell myself that I can answer this question expertly at any given time, however);

And there is the one that pains me to read, because it cuts to the quick:

"young cancer survivor unable to picture old age."

All of these words have other words underneath them, other meanings. This web searching that we do coincides with all of the soul searching that cancer entails. Can someone please answer the unanswerable questions? Can I get a witness? I wonder sometimes where my searches are, what would happen if I put my most personal questions into the cloud. What if I searched for this: what do you do when your husband is crying because your daughter was asking what she will look like when she is 18 and they discussed whether she would be taller, fatter (her word), have longer or shorter hair, and she said she would have long hair, unless she got cancer and it fell out?

What, if anything, would I find?

What would happen if I did a search for this: I was so proud of this same daughter when she played the lead role of Dorothy in the Wizard of Oz play at her school today, because she remembered all of her lines and wasn't shy at all, and I was proud of myself for finding the dress and the shoes, and I wonder what she will look like, and be like, when she grows up, so I couldn't help but just cry during the show, and not out of happiness but a real, deep, penetrating fear that I will never get to know her as an adult because I will die too young, but 30 seconds later I was laughing and joking with the other parents?

What, if anything would I find?

I don't know. I have finished searching for answers about breast cancer, at least for now. I am glad, however, that this strange rambling vehicle I'm using to express my thoughts has led some others closer to those elusive truths that it would be much better to never learn. In closing, I don't say this often enough--thanks for reading.