Wednesday, March 20, 2013

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 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


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.


  1. *standing ovation*

    Is it weird that I want to say "Congratulations" on this? Because it's kind of like "Congrats on still BEING HERE", which is very weird for sure...

    So I won't say it. I'll just say that I love this post.

  2. You do nothing short of amaze me.

  3. Happy 1000th day. It's a great milestone to reach for sure. I wish you many, many more days.

  4. Is it weird that KatyDidCancer somehow seems to have evolved into something slightly independent of you as Katy, but is of course wholy dependent on you giving life to it each time? As you said, it returns the favor by keeping you sane. I wish it many happy returns on this 1,000th day, and thousands more to you my friend.

  5. Katy, I'm so happy you started this blog and keep it up. I think it's why most of us blog: to keep our story from being forgotten. If I die tomorrow, I know that my children will have a small window into who I was...

  6. 1,000 days. Hard to believe and not hard to believe at all of course.

    As your mom I have appreciated this blog more than you will ever know. You say it saved your life. It has completely

    enriched and rescued mine.


  7. Wow. 1000 days of the blog. Glad it has done all it has done--including having brought you back to writing. There is something about the act of creation that defies the very idea of destruction (as obvious as that should be, it isn't always), and I think you've said that very well here.

  8. Love love your blog and so glad the someone actually talks about PTSD after cancer. I thought I was crazy or incredibly weak to have so many psychological issues after cancer and anyone I talked to just reaffirmed that including my doctors and all my friends who just repeated the same theme (i.e. "you HAD cancer, now you don't, so get over it"). That one came from my sister. Thank you so much for making me (and I'm sure everyone) feel less alone!