Sunday, December 28, 2014

Day 1,569: KatyDid 2014 Year in Review

I have a confession. I have absolutely no interest in seeing Facebook's idea of what my 2014 was like, and since I keep it real here in cyberspace, I'll admit that I have yet to click on a single one of those recaps. Since there's some kind of strange, unseen pressure to write blog posts that coincide with events, such as the turning over of the year, I thought I would do something different with my own recap. Here's the KatyDid 2014 Year in Review. See if you can tell what I did here.

No one ever wants to hear anyone talk about death, especially people who have reason to believe they might die sooner rather than later. But I have cheated death 5 times--5. I don't have to apologize anymore. I have little to no nostalgia about the past--I think about it a lot, but I feel no loss or longing. I long for the future. I want to keep telling stories. I want to have stories to tell that take place in 20 years. I want to just be healthy and live in my body like it is a normal body, though it never has been, regardless of what it looks like, this body is a story in itself, a character in its own right. May it take a long, long, time to get to the end.

And so it goes. These things can be said in the same tone as many other things: I woke up today and could no longer walk. I had 100 seizures today. I am in a wheelchair, I need someone to move my body so I won't get bedsores. This medication is poisoning my liver, but I need it to avoid potential brain damage from seizures. My gallbladder needs to be removed. There's a gun at my head--a real one, all metal and coldness. I am a baby but that penicillin nearly killed me. I am bald. I had my breast amputated. I am hugely pregnant. I am too skinny due to chemo sickness. All of those statements describe things that have happened to the body, to my body. But it is just a body. Its purpose is not to be beautiful, to look young, to be a subject of comments from strangers. Its purpose is not even to help push through suffering, nor to experience joy in all the things it can do.

Those decades of others defining me by my hair were just that--other people's opinions, other people's judgment. It had just about jack shit to do with me and who I was.

I have written about (my son’s) night terrors, and yet…I have not. I have not written about the look I see on his still sleeping face, when his eyes are open and there is something in his eyes and his scowling face that I have never seen on another person before, a look of pure rage. And then, he begins to fight. He jumps up and down, he flails, he screams in an inhuman fashion, he throws things—all kinds of things, including his favorite things. He throws with perfect accuracy, at the thing, that bad guy, RIGHT OVER THERE, as he points, and fights. He fights the thing that makes his team miss the field goal, the thing that does things he cannot mention, he fights us, he fights himself. His fists pound, he gnashes his teeth, he screams “DAD! CAN YOU CAN YOU CAN YOU!” He screams that he has to tell us something, but it is something he cannot say. I try to comfort him and sing to him and do motherly things and he looks at me as if I am not there, because I am not, I am not in his dreamworld. I am in his real world, the world where cancer ends and death is not hiding right behind the edge of his door. I exist in his world where the edge has not been built yet, where there is nothing so monstrous to fight, where throwing things is not a way to save your life but a thing you do with your mother in the snow in the sun in the yard in front of your house.

There are things that are acceptable to say about cancer. It is not my job to say them. It is my job to say what I feel needs to be said. And so I will end by saying that I have had cancer, probably for going on 7 years now, and while it is a part of me and always will be, I wish it weren't so. I wish I could promise my family and the people who love me that I will be there for them, in the future, in the beautiful promise of thousands of tomorrows, but I cannot. All I can do is this, all of this, as long as I can, as best I can, as me as I can be.

I have been thinking a lot about the concept of "choice" recently. We are bombarded nearly every day with this concept, with this notion that life is just a series of choices that are laid out before us, and the content of our character can thereby be judged by whether or not we made the "right" choice. The thing is, I think that the whole concept of choice is actually just privilege in disguise.

There was death, looking right at us, lingering in the corner right next to life. And there it was...AGAIN. So many things have happened. And yet somehow, through all of that, the initial drama, the kids, the's like we've been on a really, really long date for the past 11 years.

We started to ride. We were sprinting. I was thinking about the time when Gabe and I went to Maine, for my 28th birthday, when we had been dating a handful of months and were newly in love and our lives were laid out before us like the lighthouses beyond the black rocks. And then, I began thinking about a conversation we had last night, in bed, about whether or not he saw me as disfigured. I don't normally see myself that way, but for a fleeting moment, I did. And he got very quiet and said nothing. I asked if he missed my old breast. I thought he wouldn't answer me. And then finally he said "a little bit. but it's not about how you's just..." and his words fell away and I knew what he meant: I miss how it was before--before we knew. Before it happened.

I am not super-maternal, so I don't miss the baby stage specifically. I miss the opportunity to have brought another interesting person into my family and the world. I have dreams about kids who don't exist and never will. I have fantasies that I don't even tell my husband about, where we take in some wayward youth, some teenager who has no other place to go (Gabe has always said we would do that, as if it were a given--it's one reason he wanted a bigger house, I guess because he feels the need to pay forward what others did for him), and part of the reason that I think about that is because I don't really believe that I will live to see my kids become teenagers. I believe it is possible, but I no longer feel it is likely. So I have these thoughts and then I let them go. I don't cry, I don't get lost in nostalgia, I just feel loss, and even though I am stoic and always have been, even though some people have told me I'm the wrong kind of mother, the wrong kind of woman or wife or whatever, I still feel this loss. And it's real. And it's because of cancer.

She has always been the sensitive, quiet type. And I don't mean she is actually quiet, though I suppose around strangers she is; she even manages to act shy around her closest friends until she warms up to the idea of them being there. I mean she is quiet in that she's not talking. She keeps everything to herself--especially the bad things; her fears, her concerns, her pain. This is the kid who potty trained herself at 2.5, and in the middle of the night we would hear her get up, run to the bathroom, flush, wash her hands, and put herself to bed. She would take care of her own nosebleeds, no matter how severe; sometimes, we would go into her room in the morning and witness the blood bath. Why didn't you come get us?! we would ask, and she would shrug and say, "I didn't want to bother you." She is not particularly affectionate, has never been cuddly. I know a girl like that.

At one time, I was a planner. Then, the plan changed. As all mice and men know they are wont to do.

I want women to be considered brave for being brave, not for looking "other." I want people to give cancer patients credit for staring death in the face and shrugging their shoulders, not for coping with disfigurement with grace. As women help their children plan their futures, knowing full well they might not be there to witness them, I want people to notice the resigned and wistful look in their eyes, not the hair on their heads or the swell of flesh lying on top of their broken hearts.

That's what we have--science and faith and hope, technology and art, progress and the knowledge that some things never change. All we have is this human striving for immortality, the one thing we collectively know is impossible to achieve. And because we know that desire is futile, we try to do something that isn't. It's in that space where we live our best lives.

And so again I ask, who am I if I am not a fighter? And really, what am I supposed to do now?

And now, I am still sprinting, but they are micro-sprints. There is no 26th mile. There is no 5 k. There is the house three doors down that my mother let me run to as a child, and I know that when I reach it, I have to just turn around and run back. That is what I am doing right now--running back and forth between what is happening this moment and what will happen in the next few hours. There is nothing beyond that. There is race after race, but they are suicide sprints.

I couldn't foresee that I would be in the same boat three years later, but that is not what is relevant today, on May 4th. What's important is that I'm still in the boat. I haven't capsized yet. Thanks to those who are still swimming next to me, still standing there with a life jacket. One of these days, I'll meet you at the beach.

And then, he did the thing that only Augie does, that someday too soon he will be too embarrassed to do. He grabbed my face with both of his hands and swooped in for his kiss, and then gave me a crushing hug. And then we just looked at each other for a minute, forgiving each other for how hard we've made it for the other by feeling everything so completely, nodding at each other, acknowledging the life and death that tie us together and make us ask imploring questions in the dark.

What I do know is that the fog is lifting for me a little around here. I can imagine making other decisions, reading great books again, maybe even making plans. I can imagine living a long life. Even if it doesn't come to pass, I can imagine it. I can see myself the way others see me, as the one who did things they had never seen before, who gave voice to things they were afraid to bring up, who just kept taking the hits because having wounds that heal is better than being knocked out cold.

So, I get you, with your exuberance for the little things, your sheer force of will, your impatience and your rhythm and your lack of self consciousness and the deep thoughts you have and your interest in the whole world including the things you know are too old for you like sex and whiskey. You try me, because seeing you is like seeing myself, though you are a tad wilder and a much better liar. And I remember what was going through my mind, and the things I plotted, and I know we have our work cut out for us. The chickens have truly come home to roost.

That--that thing you told your brother, that made him nod his head like it was the most natural thing in the world: "She will always be our mom. Even when she's dead." And if I believed in a different type of existence, I'll tell you what. I'd be damn proud of you both, even then. Even when.

I remember being young, and keeping journals. I remember how I rarely wrote when I was happy. I remember that my best poems are the saddest ones. And I know that we have been given a range of human emotions for a reason, and that we should not ignore those that are hard to feel in favor of those that are easy to feel. I remember when I wasn't afraid of grief.

I stayed up last night listening to the loons call, right off of our dock, so close it was as if they were in the house with us. I asked Gabe if they were nocturnal. He said he didn't know; maybe they were, maybe they just acted like it sometimes. I thought that was a good answer. It was a beautiful night and the wind had been so strong that some of the bugs had blown away. Maybe they knew it was impossible to tell when they would get another night like that, and they didn't want to miss it. These days, more than ever, summer is like that.

But I've said it before in this forum and I will say it again--not yet. Not yet. I've said those words to myself every single day of the last year, of the last four years, really. The ability to say them is a privilege denied to many. So what can I say but enjoy your years, and the age they bring. Live in the skin that holds you, not the skin that holds someone else or the person you might have been.

You know, a lot of times, some good comes out of responsible adults forgoing power for the sake of it. Sometimes, it's good to hide knowledge from people you love in order to protect them. Maybe there's a reason to close the gates. I'm just saying. Until I started writing this blog, I never revealed the deep parts of what went on in this mind, through all of the different physical and emotional trials. Just ask my mother. As a kid, I wasn't talking. And so what? Does that mean I was damaged? Maybe I spared others the specter of my thoughts. Maybe that's a real thing, and not a bad one. Maybe women can be nuanced, not just literally fire and ice.

And though my mind was not lost in other thoughts, and I did remember and think about what my family didn't say, now I can know this: I have given my family the kind of summer I remember. Maybe we have had those kinds of summers all along, no matter what else was happening. My children have had summers just like the ones of my childhood: colorful but already faded, busy and lazy, stubbornly placed outside of the real world, full of nothing more than the memories you'd like to keep.

I didn't cry when they were born. I didn't cry when I found out I was pregnant with either of them, even Augie--and I never expected that it was possible for me to get pregnant again. I haven't cried for any of their transitions with schools and child care centers. I can't think of any milestones that made me cry. Of course, this doesn't mean I haven't cried over my kids. I cried a whole hell of a lot when I was first diagnosed with cancer. I cried just from looking at them. The whole thing just broke my heart, to think what I had to give up, what I had to stop doing, what I might miss. I cried when I saw other people's children and teenagers. I just cried and cried and I felt like someone else.

And this, this writing, is the one thing I have always done, without feeling like I should be doing something else, without worrying about whether I'm any good at it, without caring if anyone read it, without it seeming like work. I've had 39 years of stories to tell and a way to tell them. I hope to have many more, but I know I might not. These years are something that for all intents and purposes should never have come to pass, not considering everything else that's happened.

It's a fiction, and we know it. It's a story we tell in the hopes that it might come true. No one here expects a happy tale, but we would like it to be interesting. We would like to tell each other the story arc and choose our favorite characters.

And now I want to enjoy what I’ve built here.

I'm tired of it, and that's why I haven't written much lately. Sometimes I am absolutely astounded when I think about the fact that I have had cancer, much less that I have had it twice. It doesn't seem possible, and yet I can hardly remember not being this person. I feel like my marriage to cancer has wilted on the vine and maybe it's about time for me to take a lover.

I want to live in this world, with its moments large and small, moments of real grace. I want to live in a world where people have seen enough of what the world really is to look at each other knowingly, without pity or sorrow, and silently affirm that when it all started, we were all beholden to someone else to survive, and it will be that way again, and again.

My mom made a toast at the wedding. It was the only one. She said "here's to ten more. and ten more. and ten more. and ten more. and ten more. and ten more."

I think of age as the privilege of seeing your life as a really interesting story that is sitting on the bottom of the pile of millions of interesting stories. I think of age as not having to worry about leaning in or leaning out but rather just...kicking back. Kicking back and flinging the ash off the cigarette that you're not supposed to be smoking and that you're probably holding wrong and just watching the people pass judgment on you one way or another and not noticing anything but the curl of the smoke.

At the end of the day, I don't think kids care who is a default parent and who is a back-up parent. I don't think kids think about their parents like that at all. Kids love their parents for being their parents. For all the kids out there who have an actual default parent, because the other one is dead, the only thing they wish is that the other parent was still there, being imperfect, watching basketball and yelling at them about shoes, going out to work or the gym or for a walk, but at least, miraculously, coming home again.

So on Thanksgiving, maybe that is what we should give Thanks for--the opportunity to experience life in fellowship with others. We should give thanks not just for being lucky or blessed but for knowing what luck and blessings are and how easily they can be stripped away. We should reflect on the temporary nature of our luck, and the permanent nature of our temporary-ness.

Sometimes I feel that I am always telling this story, the same story, over and over again. It is not a story about cancer. It is a story about luck. It is a love story. It is a story about the things you say when there's nothing right to say. Every story we tell about ourselves is really a story about someone else, and I don't mean it's a story about who we were or who we might be--I mean it is actually a story about other people. It's in the reflection, the looking back, that we see not only ourselves but all the others that are standing nearby.

Remember how magic works. Augie told Lenny that it's not just that Santa is magic. That's not enough--that wouldn't get the job done. So how does he do it? Remember this: "He stops time."

That's 2014, folks. A paragraph from every KatyDidCancer post in 2014, from the beginning of the year when I was still in the middle of chemo, until today, when I am still in the middle of life, where I've been all along. Thanks for joining me.

Thursday, December 25, 2014

Day 1,566: Sesame Street Christmas

When I was a kid, we watched Christmas Eve on Sesame Street every year. I had a brainstorm the other day to order it from Amazon so my kids could watch it too. The show first aired in 1978, when I was three years old. The plot goes something like this: Oscar makes Big Bird paranoid that Santa is too fat to possibly fit into the skinny chimneys. Meanwhile, Cookie Monster is trying to write a letter to Santa about wanting cookies, but he ends up eating the pencil, the old-school typewriter, and even the phone. Down the street, Bert and Ernie get Mr. Hooper entangled in one of the most endearing Gift of the Magi stories ever told. And in the background, all the time, there's that perfect 1978 Sesame Street backdrop of the most diverse cast ever brought into a show. The kids that were brought in as extras, all of whom must be older than I am now, are still adorable and endearing. The story is a great one. But it's the version of Sesame Street itself that I love.

I think of my old neighborhood like that. People playing street games. Newspaper stands. Kids wandering around by themselves. Other people's parents looking after me. Working moms and single parents and apartments. Taking the subway. Metal trash cans in the alley. And when Maria just GIVES IT to Oscar for starting all the trouble, and it's like her superpower is making people feel bad about themselves because they deserve it? Yeah--that.

You've got this cast of crazy characters. A guy who is, according to my daughter, "just plain mean." An oversized bird who talks to an imaginary friend who isn't imaginary at all but is rather, well, what the hell is Snuffy? Grover interviewing the kids about their responses to how Santa gets down the chimney ("nope, he goes through the window") and everyone takes it absolutely seriously. Bob who sings cheesy songs after telling Linda she should read a magazine or something since she's deaf (WTF?). People with very ambiguous relationships. Gordon carrying little Patti around, because her mom was all, oh, yeah, she can come to your place if Big Bird doesn't come home.

I know we were characters in our old neighborhood. So were so many other people. Sometimes I wonder if there are neighborhoods like that anywhere in the world anymore, with that level of economic and racial diversity and poverty right next to the working class and solidly middle class and renters and homeowners interspersed. And then sometimes I wonder if it was like that at all, or if I just remember it that way, but no, I think it was really like that. Sometimes I have no idea how to do things in my life the way my life is now. Gabe doesn't either. And I know that we are characters in our new neighborhood, but sometimes it still doesn't seem to fit. He will always be the guy who will eat your kid's leftovers because you never know when you will eat again and I will always be the girl who is looking over her shoulder while driving the getaway car, waiting to be pulled over.

I don't know how to be any different than I am, loudness and hand gestures and swearing and stubbornness and all. I don't know how to pretend things are ok when they're not. I don't know how to sugarcoat things or hide the truth from my children.

OK, that last one is a lie. I do know how to help them believe in magic. I know that years ago, when she was only 5, my daughter walked up to Gabe and told him that she had thought for a while there that Santa was really just us, putting presents under the tree after we went to sleep. Then, she realized it couldn't be true, because who wants to wake up at midnight? So, Santa must be real.

That's the story she was telling her little brother last night, as we drove home from my mom's Christmas eve dinner. Augie, how realistic is that? Why would you want to get up if you were already asleep? Why would you wrap presents for yourself, knowing what they are already? It doesn't make sense. Of course Santa is real.

Of course.

Big Bird learns that. Santa comes while he's asleep, and much to my kids' chagrin, we never get to see how he did get down the chimney.

It's magic.

It is magic. It was magic when I was 16 and it was just my mom and me at home and I was an insomniac and I still could not stay awake on Christmas Eve--because let's be honest, I didn't want to stay awake. It's magic that I never, not once in my entire childhood, tried to find the presents, and it's magic that neither of my kids has ever done that either. It's magic the lengths we go to, all the places there are to hide, the way we who are so loud can learn to whisper, it's magic that little brothers don't always believe their big sisters when they tell them a seemingly impossible story.

My son has his own ideas about how Santa does what he does, and that's what I want to leave you with this Christmas. But first, let's remember what those Muppets had to teach us. Let's remember that it's worth it to sacrifice your most prized possession to give your best friend an empty box. Remember that Mr. Hooper, who doesn't celebrate Christmas, didn't want anyone to have to be sad in order to make someone else happy. Remember that your friends and family don't have to be perfect, or cheerful, or able-bodied, or young, or important and visible to other people, to be your friends and family. Remember that beautiful things happen whether or not you witness them. Remember that someone might be looking for you when you disappear.

Remember how magic works. Augie told Lenny that it's not just that Santa is magic. That's not enough--that wouldn't get the job done. So how does he do it? Remember this:

"He stops time."

Wednesday, December 10, 2014

Day 1,551: It Ain't Over Till It's Over

Four years ago, I wrote a post about finishing cancer treatment.

Except that even then, it wasn't really about finishing cancer treatment. I wrote about how anti-climatic it all was, about how ambivalent I felt. I wrote about writing, and what it meant to me. I wrote about what I had lost, and what I hadn't lost, and how I figured out which was which. I revealed two of the most emotionally painful things that had happened to me during cancer treatment. I wrote this:

"I am not going to be one of those people who says that cancer gave me a gift, and I am not going to smile about the hope and inspiration it brought into my life. Maybe I should, but that’s not me, and those words seem pretty hollow, so if people wanted to hear that I assume they stopped reading this months ago."

December 10, 2010

I never, not once in that blog post, said that I would never have to do it again. I celebrated it being over without trying to say that I knew for sure it was over. There was no ass-kicking, no champagne, no sense of triumph. The only thing I did was rip the radiation tape off my chest in defiance, taking some burned, raw skin with it and making myself cringe in pain. Other people might have gone out to dinner, I maimed myself a bit and moved on with it.

And then years later, I moved even farther out of the realm of what a breast cancer survivor is "supposed" to be, and took up residence in this place that no one wants to visit, where the casseroles are long gone and the sight of the natives brings fear. I moved to the land where cancer comes back.

And by moving there, I was relieved of the burden of being the "right" kind of cancer survivor. But there was another uncomfortable truth as well. I bore another scarlet letter, and it wasn't just because of my recurrence--it was because of this, all of this WRITING, this telling of the tale the way I really saw it, right from the beginning, right from day one, back in May of 2010, when I had just been punched in the face by cancer but I could still see it clearly in spite of my black eye. Even then, it was true. On Day One, I said 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.

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."

I failed at the narrative.

I didn't tell the story I was supposed to tell. I didn't tell the story of triumph over adversity--I never told that story, not even before my recurrence. I never told the story about how cancer changed my life and made me a better person and gave me a wake up call. I had my first wake up call at 6 years old. My body, and my brain, didn't work the way they were supposed to, not even then. I had to poison myself, even then. I had to accept that I had a disease that killed people, in absurd and random ways. People with epilepsy died in bathtubs. They died walking down the street. They died in their beds. Sometimes, they had seizures so severe that they didn't die but they were left with permanent brain damage or physical disabilities. Those people did not deserve to have those things happen to them, and I didn't deserve to NOT have those things happen any more than they did, and I knew it. And life kept happening, reminding me of that again and again: the things that happen could happen to me. There is no "other." I'm the other. We all are.

Well, of course I told EXACTLY the story I was supposed to tell, but I mean, that's the way you are led to feel. The breast cancer narrative that our society believes in is not the same as the one that is true. The cancer I've written about, all the different difficult things I've talked about that aren't related to cancer, none of it is the story I was supposed to tell. But if I can say one thing that I am glad for, it is that I never led myself to believe that I was fighting a war, that I was in a situation where my cancer and my character intersected. I didn't blame myself for having cancer once, and I didn't blame myself for having cancer again. Cancer treatment was cancer treatment, not a battle plan. There was no definite end. I wasn't taking names.

I look back on the blog post I wrote four years ago today, and I am proud. I'm proud of myself for having written something that would not be painful for my future self to read:

"I look through all this and I realize why the battle metaphor is so stupid, besides the misplaced machismo wrapped up in it. Battles end. I am done with treatment—for now—and I wonder what the hell I will do with myself, but cancer is just a part of me now, and always will be, even when 2010 has come and gone. I plan to make myself write this blog at least once a week, even if no one reads it now that I’m done with the technical treatment. I still have a lot of things to say about cancer, about illness, about gender, and some of these things are things I have always wanted to say but never did because I was too busy to sit down and write about them, or because I thought no one would give a shit."

I wrote about wanting to be realistic without being morbid, about wanting to provide others the opportunity to know they didn't owe the world a specific story, about wanting to teach my kids what it really means to be a woman in the world. And that's what I was giving myself, that gift, even then: the gift of remaining myself, of holding onto myself. I was allowing myself to not have to be made BETTER, to not have to feel like there was something wrong with me in the first place. If I had tried to be remembered for being an inspiration, it would have been crushing to have to settle for being remembered for my ability to just keep putting one foot in front of the other.

Sometimes I feel that I am always telling this story, the same story, over and over again. It is not a story about cancer. It is a story about luck. It is a love story. It is a story about the things you say when there's nothing right to say. Every story we tell about ourselves is really a story about someone else, and I don't mean it's a story about who we were or who we might be--I mean it is actually a story about other people. It's in the reflection, the looking back, that we see not only ourselves but all the others that are standing nearby.

I don't think my story has changed. It also hasn't ended, and for that, I am lucky, and glad. I want to continue to be able to keep my eyes open and see the world as it really is, without letting it bring me down too far into the abyss. I want to just be myself.

When I was eleven years old, I had a grand mal seizure in the middle of school. The entire sixth grade witnessed it. I had been "cured" of my epilepsy at 8, but even then, my body didn't follow the rules. I was thrown into the land where diseases came back right there in that elementary school classroom. My parents were having a very rough time at that point, and my mother was newly working. I was picked up from school by a neighbor; it's one of the only times I can think of where that "emergency contact" needed to be used. When my mom was able to get me, she felt so guilty for having been at work. She kept telling me she was sorry she wasn't there for me.

There are so many things I could have said, or thought. I could have felt angry or ashamed. I could have said nothing. I could have given her a hug and cried on her shoulder.

But who am I kidding? I could no more have done those things than fly.

I shrugged my shoulders and laughed. I said: "That's OK, mom. I wasn't there either."