Day 1,318: The Edge of the Door

Childhood doesn’t exist. We tell ourselves that it does, that innocence and imagination and unbridled joy are things that happened in the past, that we can’t ever have again, because that was then and this is now. We tell ourselves, we adults, that we KNOW things, things about suffering and pain and sex and disappointment and love and the body and yes, even death. We tell ourselves that we know these things and our children do not.

We are so wrong, all the time, wrapped up in the ideas other people have told us about how it is, lost in the words of those who try to convince us of what knowledge and emotions are available to us. We are wrong about innocence being lost, when children really know all the things that we know, when we have the same capacity for joy that they have for sorrow.


Maybe we are all more ourselves in our dreams. When I was a child, I rarely dreamed, and when I did, my dreams were full of real life, the way they are today. But there were exceptions. There are always exceptions. I had a recurring dream as a child, and I remember it still, though it has been 30 years. I remember a lion, which got bigger and bigger as I neared it, trying to find my way through a labyrinth that was impossible to escape. I had another dream, and in this one there was a little girl on a television screen, who also got bigger and bigger, until I could see her face, all grotesquely misshapen, and her mouth which didn’t look like a mouth at all, opened even more grotesquely and said to me “don’t try and turn the channel, it won’t help, you can’t go, you can’t wake up.” I have written about my dream about the end of the world, when the snow crashed onto the car I was driving and I was just so alone, and another dream that happened only once and stayed with me for 25 years, when I fell out of an airplane that had once been a car, and my mother called out to me, and I fell into the water, and, I suppose…I died.

Dreams are either about life as we have lived it or death as we will inevitably experience it. There does not seem to be any in between in dreams.

I see this with my son, who is not yet five years old. I have written about his 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.

And his father doesn’t live there either, though one time, the edge begins to blur and the little boy is awake and asleep, and he is able to actually answer his father’s question, when he asks what he is afraid of and the boy says this: I’m afraid that when I’m dreaming, that I will never wake up. I’m afraid that the dream will never end. I’m afraid that when I’m awake, I’m actually still dreaming.

We are all fighting death, in our dreams and in our lives, in our childhood and our youth and our middle and old age. We are all as innocent as we’ve ever been and as wise as we ever will be. We are children and we are adults. We know things we shouldn’t know, that we can’t possibly know, and because we know we pretend we don’t. We sit here on the couch while our family watches a movie about a snail who is fast when he shouldn’t be and whose dreams became real, and we write something that is just like things we wrote as a child, as a teenager, and we remember a time when we told ourselves that those things were just so artificially dramatic and impossible and JUVENILE, and we realize that we have always been writing this, the same story, the same poem, the same refrain that lies right by the edge of the door.

Day 1,316: Hair

(June 2010, about a month before I lost my hair to chemo)

I've written my share of blog posts about hair, or the lack thereof. I wrote many of these back in 2010, when I was mourning the impending loss of my "famous" hair, the hair that other people defined me by since I was about 12 years old. I had long, auburn ringlets. I had hair that made people forget my name, that led to situations like some man running after me--literally, like in a movie--while I was on a break from work when I was 18, to tell me he just had to talk to me because I was so pretty and oh my God that HAIR. I have redheaded children, I come from a family of 4 redheads. Hair and Katy seemed like the same thing for so many years. When I was a freshman in college, during orientation, we were put in a group of strangers and told to say something nice about the other people. I said things like, you're really friendly. You have an infectious laugh. You seem like you listen intently. Every single person, with one exception, said the following to me: You have beautiful hair. The other guy told me I had great posture. When my son was a baby, the other moms at his daycare never bothered to find out who I was, I was just the mom with the "pretty red hair." People stopped their cars to ask me about my hair, the way they do with my children today. I lived with all these strange ideas about redheads, these stereotypes about us being feisty and sexy and stubborn and oh is ALL your hair red wink wink (correct response, formed by myself at age 16: "if that was any of your business, you'd already know").



(age 16, on the beach)

And then, I came down with one of the few diseases that would take that hair from me. People, a few men especially, wept when learning I would be bald. People told me I would be beautiful "anyway." I received a lot of advice about wigs. I was told by a social worker in oncology that my hair was "epic" and my surgeon's nurse commented on my hair every time she saw me, knowing full well I wouldn't be able to keep it. People said "it's just hair." Other people said "it's not just hair, it's identity, isn't it?" And I didn't know how I would feel. And then...



(June 2010 again)

I was just bald. I was bald because of the poison coursing through my veins. The wigs annoyed me. I had bigger problems. I kept my hair, my old hair, and then it just seemed like some dead stuff that had nothing to do with anything anymore. I realized something, that hair is indeed cosmetic, it is NOT identity; I felt that the changes the temporary menopause brought to my sexuality were much more identity-changing. I never felt ugly, I never felt not sexy, I only temporarily felt like I looked like a boy, I didn't worry about my husband being attracted to me, and more than anything--more than ANY single thing, I never didn't feel like myself.



(August 2010, my 35th birthday)

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 learned it WAS just hair.

I was glad to be able to keep my hair during this round of chemo, not because I cared about being bald--that didn't rank on my list of issues when making my chemo regimen decision--but because it would be easier for my kids to forget what was happening in between chemo weeks if I had hair. Then, it started to thin significantly in the final weeks, and I thought about buzzing it again. I have a fairly conservative job, so that seemed like a bad plan, so I just chopped it into this pixie-ish thing I have right now.



(last weekend, post haircut)

And now I want to tell every single person I see--men, women, children--to cut their hair. Everywhere I go I see too much hair. The guys at my 20 year high school reunion who were bald would remark about it and I would say, hey, bald? Whatever. I've been there. It's not so bad. I remember at age 17, 18, I was dating a man with long hair, and there was just hair EVERYWHERE. I would find it on EVERYTHING. Gabe has told me that my hair was very pretty, but there was a lot of it, and it would get in his mouth, and hey just do whatever the hell you want with it, if you want me to get out the clippers and buzz it, just let me know, you don't NEED hair.

I've stopped reading women's magazines because 90% of it is dedicated to hair, and makeup, and things that seem immaterial once you've lost your eyebrows and you have chicken-little hair on your head and you just rocked it out because there were other problems, like the CANCER. Hair wasn't about femininity, sexuality, identity, youth, or anything else.

It was about dead stuff growing out of your head, as my daughter told me back in 2011. I said it then and I will say it again: that dead matter laying in a box for a year? Better it than me. We never, in the end, really had that much to do with each other.

A woman I know with triple negative, BRCA+ cancer, who was bald, had a double mastectomy, ooverectomy, and hysterectomy and who was burned from radiation and the whole lot of it, perhaps said it best:

"I thought I was losing everything that made me who I was. Turns out, I was wrong."

Day 1,305: The Body

I know that in some sense, if I am to write this blog, I should have written a post last Thursday, when I had my last infusion in this round of chemo. I should have written a post about being "done," about what a long road it's been, and all of that. But I didn't.

I didn't, because I wrote that post three years ago, when I finished cancer treatment the first time, on December 10, 2010. I called it "It's All Over but the Shoutin.'"

I was wrong. Everyone was wrong. It wasn't over.

It might not be over yet. We shall see. I still have about a 25% chance of getting mets. Metastatic breast cancer doesn't care if you had a mastectomy, if you have completed 10 months of chemotherapy in three and a half years, if you are young, if you have children, if you're a badass. It just doesn't care.

So many women with this disease focus so much on the anniversaries, the random dates that might signal whether or not you will live, because you have made it this far, because you have survived.

It's all meaningless to me now. I have probably had cancer in my body for the last seven years. For some reason, it hasn't spread anywhere outside of my breast, but that doesn't mean that it won't. So, on the one hand, I walked away from chemo--again. On the other, I will have lasting effects from it, perhaps permanent ones. In the last month alone, my hair has thinned, I have entered into what I hope is temporary menopause, I have hemorrhaged so badly from hormone changes that have affected my ovaries and other reproductive organs that I needed a D&C, I have in the last few weeks been experiencing horrible abdominal pain, I am anemic, my libido has tanked, and I am tired.

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--literally, 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.

No. The body is a vessel. It is a container, a set of bones and muscles and flesh and fat and neurons and things that break and heal and disappear and reappear and live and die.

The body is something that holds me, that contains me, that allows me to be. It is not something that I choose to fight and it is not something I choose to celebrate. It just is. It allows for me to have a place to hold myself, it enables my personality to come to life, it provides a background for things--all kinds of things. Including this.

Day 1,300: Looking Forward

I know I should write tomorrow, though I might be too out of it. I'm sure I will write on Friday. But I need to get this off my disfigured chest tonight.

Tomorrow is my last chemo treatment. I say that, but I don't like to say that. I said it before, back in 2010, and it was a lie. Tomorrow is the last chemo treatment that I know of, right now. It's possible that at some point, even in the near future, I will find out I have mets and be on chemo for the rest of my short life. I know that is not an uplifting thing to say. I'm not sure at what point cancer was supposed to be uplifting, but our culture seems to have embraced that idea. Anyway, this uncomfortable statement is a possibility, and one that I live with every day. I will not be "done" with cancer appointments after tomorrow--it doesn't really work that way. I see my surgeon for a six month follow up from my mastectomy tomorrow (that is so hard to believe, that I have been living with this alien thing in my body, with this amputation, for almost half a year), I will have a diagnostic ultrasound for the cysts in my ovaries at the end of the month, I will at some point have this tube removed from my fake breast that was there in case I wanted to "pump it up," I have a mammogram for the right side coming up in May, and the clock will start over with my regular appointments with the oncologist; I graduated only briefly to 6 months, and now will be back at 2 or 3 months.

It will be over in a sense, but only a narrow one, and not over, at all, in my mind.

Yesterday I had that crushing depression again. Perhaps it's hormones--my period is late, shows no signs of emerging, though I am not sad about that really due to the blood loss from last month, however I do worry all the time about permanent menopause. Gabe and I got in a huge fight last night (yes, that happens), and it was partly because of my depression and partly because I have become increasingly frustrated with what I perceive to be everyone's expectation that I will always be normal, always feel normal, that I will just keep working, doing housework, taking care of everyone else, deal with 12 small domestic crises at once, be a bad ass at the gym, or whatever. The truth is I am tired. I am physically tired--this chemo fatigue is something else. And I have given up nothing, pared down nothing, haven't taken it easy, have actually piled on more responsibility rather than less. I feel that I've earned the right to be tired, but my saying that seems to take folks, including my husband, by surprise.

So I'm physically tired, and that makes things hard, but I'm also tired in another sense. I am tired of cancer. I am tired of treatment for cancer. I am tired of this nonsense that fell into my life like a huge pile of bullshit. It mostly doesn't MATTER than I'm tired of it, because what needs to be done needs to be done, but I am definitely looking forward to having a break.

I am also looking forward to looking forward without some crushing feeling of sadness.

Last night, I couldn't put my kids to bed. We often take turns so it wasn't that big of a deal, but I was just...sobbing in my living room. And I'm not even good at sobbing. I can do it for about 2 minutes, and then it just stops, whether I want it to or not. I sat there, thinking about the years. All the years. The ones I might miss. My kids young adulthood, their emerging personalities and hardships and loves and everything. The idea of missing it all. The idea of missing my own future, my own middle and old age. So then I told Gabe that he should make sure to tell the kids about me after I'm gone, but that he shouldn't be too maudlin about the whole thing.

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 itself, a character in its own right. May it take a long, long, time to get to the end.