Day 1,842: SuperMoon Eclipse

Do you remember when we watched the SuperMoon Eclipse? It was 18 years ago, and you were so small. You were six and nine. The notion of an eclipse had been changed since my youth by social media, by cellphone cameras, by pollution. We were so aware of its coming, and how long it would be until it came again. The day dawned warm and gray and cloudy. Your father cursed the saints, believing that this time, like all the other times, his fascination with space would be temporarily obfuscated by overcast skies. We didn't prepare. We had no cameras, no spot scouted out in advance. We assumed we wouldn't be able to see it. We decided to let you stay up late, at least past 9, just in case. And then the thing that never happens happened. The clouds broke, the moon was perfectly cushioned between the shadows of tree branches in our yard. You were wearing your pajamas; footie pjs and pants and nightgown and bathrobe all together. We set chairs out in the yard, on the hill, by the hostas, in the midst of a plague of mosquitoes. Our neighbors, the youngest of whom was practically grown, were watching too. You wanted to join them and I said no. We watched as a family. It only took an hour. The moon was so bright, then it got slimmer and slimmer, until it was nothing but a line of white surrounded by orange, and then was nothing but a ball of red, and we saw the whole thing happen, perfectly, as if our house was made for moonwatching. You were tired and bug bitten. You asked how craters are formed on the moon. You asked about asteroids and if there was water in space and what would happen if the moon exploded or disappeared. Your father told you people used to think an eclipse was a monster rather than a shadow, that people believed that real and terrible things lived in the sky. You said that you loved our house because you could always see the moon. You asked all sorts of questions, and we answered you, except that last question, when you asked if we would be alive when this happened again, in 18 years, when you would be 24 and 27 and we would be newly 58. We told you we hoped so, but you never know, so we should enjoy this. We told you that if we were all alive at that time, you would remember this night. I said it was hard to imagine, but then I did it anyway. I imagined, and I wrote it down for you, what I hoped I would be able to say to you during the next SuperMoon Eclipse.

Day 1,831: Nerves

I've been nervous. Anxious, I guess you could say. I've had trouble sleeping. A lot is going on in our family. New jobs, schools, multiple houses to take care of, the regular crazy full time work and full time mom balance that for me has been exacerbated by the full time cancer situation for the last five years.

Cancer actually could be a full time job when you're in active treatment. For me, it wasn't, in that I didn't take time off, hardly at all. I did take a leave during radiation at the end of 2010, mostly because our HR policies were not equipped to deal with my double daily commute. It's a long story, but yeah, I only took time off during the EASIEST time of my treatment. I had two major surgeries in 2010, and took off a total of three days, I believe. I couldn't move my left arm and I sat there typing an article with one hand. I started a new job right after my second diagnosis. I can no longer relate to the normal conversations related to work-life balance, because my situation became a little absurd at some point. Doing all that runaround...and chemo. Having chemo-induced menopause, hot flashes every five minutes, and an infant...at the same time. Making family planning decisions based on cancer and the odds of me staying alive. Stopping nursing because of cancer. My son not sleeping for months and acting like he was possessed by the devil because he thought I would die.

But that doesn't really get to what makes cancer difficult.

The scheduling is rough, the treatment is punishing, the surgery requires a long recovery, and there are side effects that last years. You lose friends and become isolated, no matter how hard you try to be "normal." You lose body parts; you face amputations and physical therapy. Your hormones go insane, and no, it's not just a life change, it's POISON doing that. You experience role reversals in your family. You grieve just looking at your children. People fear you or treat you differently.

Still, that's not what's tough. I am tough, I know that. I can handle pain and suffering. I'm good at it, whether I like it or not. What's hard is the fear, the worry, the anxiety. It's hard even for someone like me, who absorbs it in relative stride. I don't panic, or cry, I haven't dealt with major depression (though I have dealt with depression) or addiction. Many cancer patients have these problems, and you will never see me blaming them. The culture that surrounds how people are "supposed" to feel about cancer is so far off the mark it's absurd. Cancer is horrible and terrifying. It's also very common, and it will impact just about every single person directly or indirectly in their lives. So why create a false narrative? I don't understand why we have tried to dupe ourselves into believing it's a party or a chance for a new outlook on life or a journey or a chance to prove our moxie. We have a range of emotions for a reason. If our so-called negative emotions, such as fear, sadness, anger, and even helplessness cannot be tapped with something like cancer, why do we have them? I actually think they serve to protect us and remind us that there is a difference between the good and bad things that happen in life. They lead us to emotions that CAN help us greatly as we struggle. Anger, for example, can be extremely useful when dealing with a chronic medical condition. I get pissed off easily, but I also cannot be talked into anything. I am cynical, so I'm not wired to trust what doctors tell me right off the bat. I will yell to be heard. I have benefited greatly from that, in tangible, physical ways.

Regardless, cancer is nerve-wracking. Every headache, every pain that doesn't go away in a few days, every menstrual cycle that's off, could be a sign that you are dying if you have had cancer. I don't think of it that way in my every day life, because I have to get through my every day life. And please don't tell me it's negative thinking. It's not--it's the truth. Most of the time, the aches and pains of life are just that. But for a third of women originally diagnosed with early stage breast cancer, they represent more than that--they represent mets. The only thing that separates those women from me is time, or luck, or, possibly--nothing. I don't get to be normal. It's not my choice. I wish it were. I don't get to be a 40 year old woman with normal 40 year old woman problems. I understand that you might have "mom brain" or "40 brain" and so might I, but the truth is the poison wrecked my brain and I'm just getting it back. If you feel a lump, it is probably a cyst. That's how I used to think, back at 33. Since 34 I've known that for me? It's probably cancer. I know that cancer comes back, and my attitude doesn't change that. Cancer came back. It could come back again. I live with that every day, and I do it well, and with little complaining (at least about cancer), I just keep going, as almost everyone does. I don't self-medicate, but I don't judge people who do, not anymore. I think you have to do what you have to do as long as you're not endangering yourself or others. It's a hard thing to live with, when you're young, and life has turned out so different than you expected.

But here's what bothers me the most. We are often judged for being nervous. People with cancer are constantly told that, despite the completely logical reasons for our stress, we should not be stressed, anxious or nervous. Because if we are, cancer will get us! We are told that we have cancer BECAUSE we are stressed. I always argue, no, I am stressed BECAUSE I have cancer. I know women who feel they have cancer because they got divorced. Hell, then cancer is coming for half of you all before age 50. It doesn't HELP to feel stressed during cancer, or after, but the added guilt of being told that we are urging our cancer back just by trying to deal with the extreme complications of our lives is unnecessary and unhelpful.

If I say I am nervous, or not sleeping, believe me I know "it's not good for me." It's not good for you, either. It makes the day to day hard. It stresses your relationships. But it doesn't make cancer our fault. This post is not that deep. I just implore you, if you've ever felt anxious, or nervous, or stressed, or overwhelmed by life, imagine having cancer and a one in three chance of death in the next few years sentence added to that. And then, when you see someone who has or has had cancer living out her life with all of its complexity and continuing to put one foot in front of the other, pat her on the back, or offer her a coffee. Realize what it took to just seem overwhelmed like anyone else.

Day 1,809: Writing Lesson

I've just finished reading a book of essays on women and their friendships: She Matters by Susanna Sonnenberg. I love that I can read again, that when I have time I can tear through books one after another as I used to do, before chemobrain temporarily took that from me. But sometimes I wonder if too much life has transpired; I have trouble relating to anything. I kept wanting to see myself in these stories, to gain some kind of understanding, but it was like I was reading a foreign language. I could not separate the stories from the scenes that made them possible: boarding school; communities of artists; Montana; lines of coke on a coffee table in Manhattan. And then, I could not focus on the descriptions of the friendships when I was trying to understand how other things came to pass: an affair with a 34 year old teacher that began at 16 (didn't I learn to ditch school to avoid that very thing?); screwing your good friend's ex-husband; telling a friend who has had trouble adjusting to parenthood "yes you are a bad mother;" being so needy and impossibly intense in friendships; crashing and burning through one woman after another, all the time; resenting a friend for not visiting within two weeks after your baby is born (I just saw a friend who had never met my six year old son, though we live in the same city. I feel no resentment at all); telling a reserved and embarrassed friend about your sexual adventures in detail (why would anyone do this?); sleeping with a female friend out of boredom in France.

I was looking for something else, some way of describing friendship that made sense to me. I was looking for someone to play cards, to tell stupid jokes or make mix tapes or pancakes. Didn't anyone play sports together or drive around aimlessly in cars? What about book club? I've thought a lot about friendship over the last five years, and what it means and how it ends; what people can give and what they can't, and when and why you choose to care. I've thought a lot about how we forgive each other our trespasses. But I haven't really written much about it here. I guess I'm glad I still have some friends left. This cancer, and more than anything, this blog, has created a rift between me and many people. It's hard to reconcile the person I am in everyday life, the goofy vaguely pissed off person who talks loudly with her hands, with this.

And so I read this book and I didn't relate to it, but it got me thinking about friendship. And so because I have time as I sit in the woods in weather more conducive to November than August, I decided to write something about how writing about friendship is different than friendship. It was the only thing I could think to say, and this is where I say things.

Writing Lesson
For Amy Ishmael
By Katy Jacob

When I was eight, I wrote a story
about what friendship was like at six.
No, that’s not quite right.
I wrote about how it might have been
if we had been friends at ten, or twelve,
how I imagined it would be in that impossible future.
I wrote a story about worlds
when mine was stiflingly small.

The Philippines was another world
and she was going to it.
No one’s parents promised to keep us in touch.
No one wrote letters.
There was one last visit at her house,
but that memory is a cloud.
We both disappeared.

I had romantic thoughts even then,
of finding her someday, of coincidences.
When I was seven, I could no longer picture her face.
I wrote a story that had little to do with either of us.
My story won an award.
I met people, politicians.
I was asked to read to them.
I was supposed to know what to say.

I could not explain that writing that story
was easier than forgetting
or admitting I’d already forgotten.
My details were praised, but what I described
would never come to pass.
I was learning that if you can give a name to grief
and a space to memory, you will be praised.
I was learning that the notion
that nine months in the life of a child held importance
could bring tears to the eyes of adults who hadn’t realized.
I was supposed to be proud.

The world was a lie though, even then.
How could I explain?
I thought somehow she would know,
that the praise I received for remembering her
would mean she remembered me too.
I had written a story.
I titled it, simply, “Amy.” It won an award.
And now I am confessing to you.

What is important to me now
was important to me then.
I’ve just turned forty.
I can finally admit that I’ve never gotten over it.
I can confess to you that I still mourn its absence,
the absence of the story,
the one titled, simply, “Katy.”
I grieve the story that was never written
by a girl in another world
when we were eight years old,
remembering being six.

Day 1,805: KatyDid 40

When I was four years old, a little girl my age tried to drown me at the pool.

I thought of this recently, suddenly, this memory that I've always had but have called upon rarely. I thought of it when an older child stole something from my kids at the pool and preceded to lie about it while flaunting the stolen goods. The story just came out of my mouth:

People do bad things for no reason at all. They are capable of telling lies that are obvious lies without feeling an ounce of remorse. When I was four, I was playing in the kiddie pool with a toy I had brought from home: a tub filled with three bowling-pin-shaped men: a butcher, a baker, a candle-stick maker. My mother was a few feet away. A little girl came up to me and said: "That's mine. Give it to me." It was absurd. Of course it wasn't hers. I had brought it from my bathtub at home. I said, no, it's mine, and ignored her. She tried to snatch it away from me. The look on her face was full of fury, real, primal anger. Since we were in the kiddie pool, she could not have been more than five. I held fast to the tub. She was furious. She grabbed my head with both hands and pushed, and then held my face under water until I couldn't breathe. I fought her off and ran to my mother.

I stopped there once I recognized the silence that surrounded me in the car. This story was much more disturbing than the situation warranted. I thought back and realized that at the time, I told my mother the girl had tried to steal my toy, but I did not tell her she had tried to drown me. Maybe I didn't even really understand what had happened. Maybe I understood and had trouble believing it. Maybe I thought I would be deemed the liar instead. Maybe it was too hard to think about at four.

In truth, it would have been difficult for the little girl to succeed in her plot. Adults were everywhere, my mother was close, the water was very shallow. It's the stuff of movies, one little girl killing another over a worthless toy. It doesn't happen (that's what everyone says about everything terrible--it doesn't happen, but it does). But what I understood even then, and filed at the back of my mind, was that she absolutely wanted to drown me, that her intention was to get rid of me so that she could take a $5 toy that did not belong to her. She wanted me to disappear.

My mother didn't know that part of the story until a week ago. My husband had never heard the story at all. I never thought much of it: "Kids can be cruel." My husband looked at me: "Jesus. No wonder you've never trusted anyone." Huh, I thought. I always assumed I never trusted anyone for all of the other reasons, because of all of the other things that have happened.

Maybe he's right; who knows. In a way, it doesn't matter. What matters is that the knowledge of death has always been there for me, the fleetingness of life, other people's lack of concern for its meaning. It was there at four, and again at nine when I almost died in a car accident, it's been there all the time, again and again when death started calling my name and then abruptly changed its mind. Cancer did not give me knowledge of mortality or life's fragility. Cancer did not make me think of the worst case scenario in every pedestrian situation. I've always known it: I could be dead, always, people I love could die or be dying. That is always there, it is always true.

I've never really seen myself as someone who would get old. As a child, I used to imagine myself as a grown-up, but I was always about 35 in those daydreams. This is not because of vanity. What would an old Katy Jacob be like? Does a person like me make it that far?

I've been trying for 40 since 34. It seemed so far away then, when I found this aggressive cancer. It seemed far away again when I found it again at 37. Everyone around me seems to either be resigned to 40 or attempting to stop it from happening. People ask "can you believe it?" And I honestly say no, but my answer doesn't mean what they think it means. It doesn't mean "I can't believe I'm 40 when I still feel 16!" It means, well shit. I can't believe it. I'm still here.

Have I done anything of significance in these 40 years? That seems to be the question of the hour. People my age are searching: for youth, lost dreams, a singular purpose, hair, a legacy, sex, peace, recognition, the firmness of their place in the world. I'm not searching at all. I've lost or given up many of the things people associated with me. I've kept many other things, and I've remained myself in the balance. I don't feel lessened and I don't feel exalted by this life.



People think of 40 as the halfway mark. I've never understood that. Four could be the halfway mark; it could be the end. There's no way to know. It's true that at some point, you stop feeling any different than yourself. For me, that happened around 15 or 16. I felt grown then, and I wasn't wrong. I was grown. I'm the same now, though life has happened since then. I might have gained some wisdom, but most of the wisdom I've gained has been in realizing I didn't have to carry my burdens myself. The burdens were always there; I just thought it was useless or damaging to mention them to anyone else.

Augie asked me on his sixth birthday if being dead felt the same as being six, and I wish I'd thought it an odd question to ask while walking to kindergarten. Lenny told me last night that she had a dream that she and Augie were stuck in the attic and he told her they couldn't leave because they were dead. What could I say? The attic is a fun space for you. You are safe in this house. Everyone dies, but hopefully after having the opportunity to live a long life and see those who are older than them go first. Go back to sleep.

Go ahead, I wanted to say. Burden me with your fear of death. I can take it.



I wish I'd known that at 4, at 9, at 16, I wish I'd known that I could share the burden. If I could go back, I would tell myself so many things. But after reminding myself not to take myself too seriously, I would first say this: life would not necessarily get any easier, but it also would not necessarily get any harder. Life was always easy and hard. However, at some point, you can admit to how life is. You can be as you always have been, without having to hide it: you can put your pathos and humor on full display. You can talk about suffering and fear as casually as you talk about breakfast, without worrying what other people think. You can admit to being unable to cry, and not feel damaged. You can accept how other people are, not because it's right, not because you like it, but because it's not your place to think they should be different.

I know that a missive on death is not what I should write on this day I have been waiting for for more than five years. But, you all know I don't do things the way I am supposed to; it's part of what makes me who I am. Believe me, I am happy to be 40. I am happy to be able to see myself today the way I could not see myself more than five years ago, or thirty years ago, when 40 seemed a dream. I'm content with my sameness, with the ways I have changed and especially the ways that I haven't. I have always held the mundane and the absurd and the tragic and the beautiful in close quarters. Just the other day I sat half in the sun and half in the shade snapping beans for dinner while my children screamed with joy and mischief and my husband sang to himself and I contemplated the Armenian genocide and that is just how I am.

Forty, today I am forty! So many never made it this far. And all those who have know that it is not enough. Forty is not enough years, no matter how selfish we are for feeling that way. And so if I am to be honest, I will end with this: When I was a child, my mother called me Kat. I hated that nickname. I refused to respond to it. But perhaps there was something in it. I think back to being 4, 9, 24, 34, 37 and all the surrounding ages; I think about drowning, a terrible car accident, a gun at my head, an aggressive form of cancer, an aggressive form of cancer again, and all the surrounding joy and pain; and I am honest and selfish enough to acknowledge this: Yes, maybe that's right. Maybe that's what I am: A Kat. If that is to be the case, would that the four lives I have left turn out to be half as interesting as the first five have been. Here's to another 40, or however long that takes.

Day 1,783: Grief

“No one ever told me that grief felt so like fear.”
― C.S. Lewis, A Grief Observed

She was unwavering in her grief. I sat there, naked under the hospital gown, never in my post-cancer state allowed to undress just from the waist down even for an annual exam, feeling even more naked by my own interest in her words. I had never heard anything like it.

OH NO OH NO OH NO OH NO

Her high pitched voice choked with sobs, screaming the same refrain over and over. She broke the pattern only twice, once to implore "What did I do?" the other to exclaim "No heartbeat! But the baby was fine!"

OH NO OH NO OH NO OH NO

My gynecologist came in and greeted me as he always does, by calling me sweetie and slamming the door. He rubbed his eyes. I had heard his booming voice minutes before, saying Get her to the hospital. not here. FIX IT.

How are you? I said fine, which is never the right thing to say, because he wants me to say something else, something more. How're the kids, how's work. He always asks the questions one after the other and doesn't wait for an answer. He talks and I talk and we hear each other, but they are separate conversations. I like it. It's like family. I told him I needed to know if now was the time to get rid of that uterine polyp, because my husband is changing jobs and our insurance will be different and I think I should do it now.

He looked at me blankly. What are you talking about? He didn't remember. He started scouring my chart and he couldn't find any record of it. I didn't even remember when I had come in for that ultrasound (April). We never figured it out, not until later. He was too distracted; he never found the record. He examined me as he always does, without explaining anything the way some doctors do as if you are a child, he did it quickly, efficiently, and with enormous hands. He felt my breasts for full minutes. He is the doctor who found my cancer first, after I had found it, both times. He says things like this breast is perfect and touches my right breast one last time and I don't confuse his meaning.

OH NO OH NO OH NO OH NO

You hear that? I feel terrible. You hear that screaming. Yes, I said. It's sad. She is so sad. She is fourteen weeks. It happens, I feel terrible, but it happens. Nature gives us gifts and it takes them away. He rubbed his eyes again.

We were talking around each other but my mind was elsewhere too. I could not stop listening to her. I had never heard someone be so honest in their grief so immediately. I thought of my various experiences with grief, especially the crushing grief I felt at my first cancer diagnosis, and I remember how I responded. "I'm sorry, but I have to tell you that we found abnormal cells. Specifically, we found cancer cells." I felt nervous and shocked and floored and grieved and I nodded to my husband and said "Okay." I could no more cry or scream than fly. Not then, not ever.

I think about all the women I've known who have suffered similar grief to this woman's grief. I thought about all of everyone's suffering, how it expresses itself. The swearing, anger, crying, collapsing, stoicism, misplaced humor, the silence. Grief manifests itself as it does. And yet, we seem to know how to manage it. We grieve in a way that makes it easier for others to witness. We suffer in a way that alleviates the specter of our suffering. People say things like "it will be ok," "it is for the best," people tell us so many different kinds of lies. Even when people say the right thing, when they simply say "I'm sorry," "I feel terrible for you," "I can only imagine how hard this is," it isn't quite right, at least I never feel that it is. What do we want from others when we grieve?

I think what we want is to not have to worry about what they have to give. We want to not have to respond, to not have to make it easier for them, but we have learned to behave otherwise. It is rare indeed to see someone or hear someone so completely unconcerned with anyone else's notion of her grief.

OH NO OH NO OH NO OH NO

She could not be stopped or convinced otherwise. She heard nothing that was said to her. It was not all right and it was not for the best and everyone knew it and I found myself wondering if her immersion in her grief would be a blessing or a curse, and then I realized that was the wrong question.

The grief and suffering is real, regardless of how we respond to it. My stoicism does not make my suffering any less. My lack of tears, my quiet and my order and my going for a walk does not denote a different level of grief. The grief is still true. It is the same with love, and how we express it. There are conventions, to be sure, but acting outside of them does not take away from the love itself.

I thought of the only time I have ever seen myself, my mothering, expressed in someone else's description of parenting. I have many friends who write blogs about motherhood, I have stood in front of hundreds of people and read an essay about motherhood, but I never see myself in any story about motherhood that there is, and sometimes, I feel like I am wrong, like there is something missing or askew with me. But when Tina Fey wrote about her father's reaction to her getting slashed in the face by a stranger with a knife, I was supposed to laugh, or be horrified by the situation. I was not supposed to gasp and look around the room when I read that he threw her in the car to go to the emergency room, braced his arm over her chest and said "don't speak."

Oh my God, I thought. That's me.

And then I thought, how he must have loved her.

I stopped thinking about grief and Bossypants. I was still sitting in the exam room. I had to come back to reality, to talk to him. He was angry with himself. This doesn't make any sense. I remember everything that has happened with you. I remember everything I have said to you. I don't understand this. Where is that goddamned record!

OH NO OH NO OH NO OH NO

At one point, he walked out of the room without saying anything to me. I am used to that by now. He went to talk to her. He brought his booming voice down. When he came back, he just switched gears. A lifetime of practice, I suppose. By the way, sweetheart. We don't even do this anymore, these paps, you don't need to come every year except you do because you are Kathleen Jacob and you are different after everything that has happened. Anything else? Um, I've gained some weight. Where is it? You look fantastic. Um I don't know. You just decided to eat then. Doc I always ate I just don't work out as much. You probably need it less now, need it less for your mind and your sleep. This polyp, what the hell. I'll do the ultrasound myself. He left in a huff, came back with a machine, did the ultrasound, found something but wasn't convinced. Problems? he asked. Well sometimes I have bleeding after sex, not much. It's not like I'm bleeding in the middle of the day. It's not like at the end of 2013 during chemo when I was hemorraghing for 10 days. It doesn't bother me. What did I tell you about this? Well, you didn't tell me much. You were trying to convince me it wasn't cancer. I wasn't worried that it was cancer, but you wanted to make sure I understood that. Of course I did. Think about all the shit that's happened. OK, get dressed. Come talk to me.

I got dressed and opened the door. There was silence in the hall. She had left. I went into his office, the same office I have visited for the last ten years. He talked to me about what we should do, he asked me how long it's been (cancer, of course I know what he means), he said it's been a hell of a ride, he told me about his daughter's internship at my company. I talked to him but I was thinking about him doing pushups on the wall while I labored with my daughter, I remembered all the times he called me from home, how I never spoke to a nurse, I remembered him crying on the phone the night before I was diagnosed the second time because he already knew, I remembered him visiting me in the hospital on his day off to meet my son, who was born three weeks early so he wasn't there to see it, I could recall the sadness in his face when he visited me in the operating room right before my mastectomy and how he looked from my husband to my brother and then down at the floor.

I remember everything I've ever said to you.

It was time to go and I knew what else it was time for, the enormous bear hug. I have never been good at hugging. I can do the casual quick greeting a friend hug perfectly. But the meaningful hug? I feel wrong, again, I feel amiss. My mother hugs me and I stand there. I hug my children awkwardly. The men in my life have always been more affectionate than me. I don't know how to hug them either. Boyfriends, lovers, my husband--their hugs are so complete, that I forget what to do with my hands, or maybe I never knew. At some point, around 15, I came up with a solution: I still just stand there, but with my hands on their chest. They never seem to notice my deficiency.

One time, I didn't hug my gynecologist correctly. His voice is always booming. What the hell! That's all I get?

One time, he said that he loved me. It wasn't even inappropriate.

I got up.

Sweetheart. You are doing great. I want you to know that I think about you all the time.

The birth and the death and everything in between, the sadness and joy of a decade. His arms surrounded me and he patted my hair and I stood there wondering how to hug him back and then it came to me. There are conventions, to be sure, but I could do it my way. And so I knew how to fix it.

I think about you and your family.

I stood on my tiptoes.

You keep doing what you're doing. Just keep going.

I put my hand on his shoulder.

I'll find that record, sweetheart. I'll call you. We'll make a plan. Say hi to the big guy for me.

I kissed my gynecologist on the cheek.

Day 1,764: The Beach

Two years ago today: Waiting for the ring to come, knowing it will, hoping it won't, dreading it. Hearing it, hesitating only slightly, closing the door, answering it. Hearing the voice on the other end crack, pause, take a deep breath, tell you what she's been trained to tell you:

"I'm so sorry. This is not what you wanted to hear. This is not what we wanted. I'm sorry. It's a recurrence."

Crying furiously and fast, wondering why your tears never last more than 30 seconds, envying people who can get lost in emotion. Asking the questions you need to ask, getting impatient with her, wondering what you will say to your new boss at your new job based in another state that you haven't yet started. Hearing the pain in the surgeon's voice when she tells you that you will need to amputate, being angry that they don't just call it that, telling her you know already, because something went wrong and would just keep going wrong, there was apparently no stopping that.

It's come down to this, a rogue body part playing bad guy. You have been stripped of some of the things that other people used to define you, your hair, your perky breasts, eventually, your quick brain, at least for a while, and your energy. You are no longer a cancer survivor, at least not the right kind. You know that everything you have and haven't done for the last three years will be scrutinized by some people who are looking for a way to explain your bad luck. You know that no one will ever admit it, but some see this second cancer as a statement about you and what you have brought on yourself. You don't care about that and you never have, and that seems impossible, but it's true.

You should feel more loss than you feel. You have lost a lot of things, not just this time, not just in these last few years. This time you should mourn different things, especially your peace, your ability to worry about what other people worry about. You acknowledge the difference but you don't grieve it. You have lost people, a lot of people, though you have gained them too. You have lost many things, but it doesn't seem like it, and even on the days when it does, it doesn't seem to matter. You recognize that you have always felt that way, as if you acknowledge your own loss in an almost objective way, as if it is obvious, but not particularly interesting. You read a book once wherein one broken character says to another "you aren't fine. just brave." That seems almost right, but not quite. You are fine, and not particularly brave. You have no choice but to be fine. There is fine, and there is dead. Pain and suffering end, or they don't, because you die. There is no bravery in pushing through the only option you've been given.

You are the same woman now as the girl you were then. You have not changed, especially in your faults. You are stubborn and willful. You do not care if and how people judge you, though you probably should. You yell too much. You talk with your hands flying all over the room. Other women go first to hurt, or bitterness. You go straight to rage, and then it passes. Or, you go straight to humor. You are more sardonic than you used to be, but not by much. You don't hold grudges, and you often don't know why other people do, and it's not because you aren't paying attention, but because you honestly don't KNOW. You sometimes get your feelings hurt, but not often, and that can mean that people say things to you they wouldn't say to other people, and it should bother you, but you let it go. You are impatient and sometimes manic. You get too lost in your own thoughts, sometimes you forget how to talk to people. You never stop doing the things you do. You are not self-destructive. You are suspicious. You rarely illicit sympathy, and you never have, even as a child, and your husband has told you that you wouldn't want it anyway. You spend long periods of time alone, and you never feel lonely. You are antsy. You pace. You do not sit still. You do many things at once. You keep doing things.

You had three years, and then it should have been a new beginning, but you went right back. You've had two more.



These five years, these two years, have been years filled with things and happenings and everyone getting older. You have been unhappy and happy in these years. You have tried to figure out something about yourself, whether something is missing. Why don't you feel more urgently, why don't you fall apart? You once had the nickname "ultrasane," and you never knew if it was an insult or not, and you proved true to the name by not worrying if it was.

You think about it, but not very often: Waiting for the ring to come, knowing it will, hoping it won't, dreading it. Hearing it, hesitating only slightly, picking up the receiver, closing the door. Hearing the voice on the other end crack, pause, take a deep breath, tell you what she's been trained to tell you.

You find it hard to admit, but before you cried so quickly and furiously, you felt sorry for the woman who had to tell you. You thought it must be hard for her, to have to do that all the time. You closed the door so your husband wouldn't hear you hearing the news you knew was coming. You had to tell your mother and your brother. You didn't want to talk to your children. Other people's responses to your bad news have always been the most painful part of life for you.

You thanked the people who responded, who didn't leave, and you did it much more than once. One day last summer, you said:

I couldn't foresee that I would be in the same boat three years later, but that is not what is relevant today.

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.

But then, you've been going to the beach all along. You often don't think to call anyone and you don't always get in the water. But you've never stopped going. That comment about the beach: It was the right thing to say, and it wasn't. Like everything.

Your mother once said that you should do what you do best. You should not sink and you should not swim. You should...float.

You float. You lie still, arch your back, look too long at the sun. You feel cold and warm at the same time. You can hear people talking, but they sound impossibly distant. You end up much farther from where you began than you expected.

This is what you have, this floating, and most of the time, it makes up for whatever is missing.

I've already met you at the beach. You might not have noticed me, but I've been there all along. I just haven't quite known what to do with myself when I'm there. Any minute now, I'll cut the water with my legs and join you in the shallow. Promise.

Day 1,752: Sunburn

When I was 19 years old, I burned myself with an iron.

Twenty years later, it's funny to think of myself ironing. My mother ironed every day, everything--tshirts, even. My grandmother had one of those old fashioned irons--no cords, just pounds of iron heavy in your hand when you heated it over a fire and hoped no one startled you. They used to iron sheets. Why did anyone do that? To kill vermin, I suppose. Me, on the other hand, what was I doing? It was summer. I was 19, home from college, looking for a summer job. I wasn't going anywhere special that day. I had one of those portable ironing boards you place on the floor. The phone rang, and I moved my arm to answer it. It was such a small movement, something you do multiple times a day, every day. My boyfriend said hello and I gasped from the pain. I had placed the iron standing up on the board, and my arm went straight against it. "Oh my God. I have to go." I hung up the phone.

This was no minor burn. The burn immediately broke, and bled. It covered almost my entire forearm. My mother lived in a tiny 3 room apartment, and she was in the galley kitchen. I ran in, stoic as always, not crying, but grasping my arm. I told her I had burned myself. She looked at me blankly and said "I'm baking a pie."

I did not know what to say to that.

I waited for her to react, to realize, but she didn't. My brother was visiting home as well. He had graduated from college and was in grad school. He was 22. He too looked in astonishment at our mother. And then he said "Uh, OK. Katy, let's go. I'll take you to the hospital." We drove to the emergency room; we might have talked, we might not have--I don't remember. I grasped my arm as hard as I could so that I could feel some pain that was not the pain I was really feeling. And isn't that how it is with everything?

Back in those days, with the way health insurance worked, the emergency room was not a place you could visit lightly. I was put on the phone and forced to talk to an insurance company representative and self-diagnose how bad the burn was. I was not the right person to ask, with my high tolerance for pain and assumption that it could always be much worse than it is. They sent us away, to an immediate care center. Once there, the nurse was aghast that they hadn't treated me at the hospital. She scrubbed the burn, dressed it, told me I was lucky, as it was very close to third degree, and gave me instructions on how to take care of it at home.

All my life I've feared being a burn victim. For as long as I can remember, it has been my worst fear. Cancer hasn't changed that. Burning, my loved ones burning, the pain, the numbness, the smoke, the disfigurement. This burn, however painful, was so small. It covered just a quarter of one of my arms. But when my mother, who had come out of that pie-stupor, tried to change the dressing, she was so gentle with me that I knew it wouldn't work. Her dabbing at my skin would not get the job done. I remembered how the nurse had scrubbed, how tears sprang to my eyes. I took the cloth from my mother and scrubbed that burn myself. The pain was excruciating. I had to bite a toothpick in order to clean it. My body changed temperature, I broke out in a sweat, I felt nauseous. I felt weak, pathetic. They had warned me of how burns, no matter how seemingly insignificant, impact the body. It isn't voluntary. How do people survive major burns, I wondered? I thought of a newspaper article I had read as a child that haunts me still. A young girl, burned in a house fire, her nose burned off, her lips gone, her entire body burned. She sat in her disfigured state with her arms crossed in defiance on the school bus where no one would sit near her nor talk to her. I asked my mother why she was so angry and she told me "look at what she does every day, what she has to do. Maybe being angry is what it takes to do that." I saw anger differently after that.

Who was I, with this tiny, insignificant burn? Why couldn't I sleep without holding my arm straight out? I could not let the lightest sheet touch my skin. My boyfriend slept with me in a twin bed in that tiny apartment and made himself smaller next to me so that I could lie with my arm outstretched. The next day, he changed the dressing for me--he was the only one besides me who could do it. I still remember that.

For years, that burn came back every summer. With the return of the freckles on my face, a perfect pink triangle (half the size of the full face of an iron) would appear. It got fainter with time. I thought it might be permanent, an involuntary tattoo. Eventually, it disappeared. Ten years later, maybe, fifteen? I don't know. One day I looked, and it was gone.



When I was 35, I burned myself with radiation treatments.

It's funny, five years later, to think of everyone's surprise at how my body handled radiation. The fair, freckled redhead, who barely burned, well not until the end, when the sunburn spread across her chest. The sunburn not caused by the sun, nor an iron, nor a fire. The sunburn that altered the DNA of the flesh it touched. I remember the radiation technician who compared me to a Thanksgiving turkey, surmising that I didn't burn because I had no fat on my chest, and just think, when you deep fry that turkey, it's the fat that burns hottest. I remember running into the house after my last treatment and ripping off the radiation tape, and some of my skin with it, and not even caring.

It has been years, and that burn comes back every summer. There is no sunscreen that can match it. After the long Chicago winter and this year the long Chicago rain, I will find sun and water again but I will also find that burn faintly spreading over my chest. I will be lying there, reading a book in the sand, and my husband will stop building castles with the kids, walk over to me, and point: "Kate. Your chest."

Oh right, I say, putting more sunscreen on, knowing it won't make a difference. My chest will be twice as dark as any other part of my body. It's my job to accept that, his job to casually notice it, my body's job to remember.



There is no larger lesson here. This is just to say. The light and the heat are beautiful and deadly. The warmth gives us life and the heat brings our greatest pain. The beach and the quiet and the perfect waves and the bald eagle flying over a rainbow the evening before the Aurora Borealis appeared coexist with the rawness and the illness and the reminder of what it all means.

Everyone has it, I suppose, all of us have this burn. On some of us, it is simply easier to see. Our bodies tell us every day, they try and try to remind us. All of us have that tenderness that makes us cringe from the most loving touch. All of us are marked.