Day 1,477: Summer

Almost a year ago today, I sat in the north woods of Wisconsin, and I wrote this:

So, here I am, this strangely healthy vital person, and my body is a walking testament to science, the good and the bad. My body is a continued experiment, as it always has been in some ways, since I was a little kid.

Sixteen days later, I would be diagnosed with breast cancer for a second time. I left Chicago for the woods knowing that I had a lump in my breast. It was confirmed by by gynecologist; I had gone to see him for my annual checkup and asked him to feel that lump for me. I know now that he probably knew I had cancer then. He made me promise that I would see my breast surgeon as soon as possible. I gave my word. And then he told me to go on vacation, and I did. It was to be the last vacation I would go on for some time. Our summer was upended by cancer yet again; I have two lost summers because of this disease.

It's strange to acknowledge that, every time we are anywhere experiencing anything, we don't know what might happen next. Or, maybe we do know, but we are still able to pretend that it isn't going to happen and enjoy where we are right now, today.

I feel like that pretty much all the time.

I know that I have been given this summer, in the same way that I was given the summer of 2012. It is a summer without surgery, cancer treatment, or recovery from cancer treatment. It is only the second of the last five summers like that that I've had. I don't have to tell my kids that I can't get in the water with them because I don't have the surgeon's permission yet. I don't have to ask my chemo nurse to alter the schedule so that I don't have to be infused on my birthday. I have the energy to play baseball in my front yard and take the kids swimming and to get ice cream while Gabe works late.

I have hair. I'm not in menopause, or puberty. I'm missing a part of my body that was there a year ago. I get tired because I'm busy and I'm getting older, thank God. I'm not the same--I've gained some weight I can't lose, I feel my age more, I've lost any feeling of victory that I might have felt related to cancer, though I don't think I ever felt that way, not really. I've stopped wearing makeup, what little of it I wore. I seem to have come out of my PTSD or depression or whatever it was I was feeling just a short time ago. I have become lazy in some ways--I contact people less, I don't go out of my way to be social. I really don't care that people think summer shandy isn't real beer. It's my summer, and the days are already getting shorter.



Just a few days after I wrote the words about my body and science, I wrote this:

I've fallen in love several times, met men in interesting places, including on a cross country train, married someone who seems to adore me. I have interesting, charismatic children. I have studied important things and built a non-traditional career for myself that has suited me just fine. I have stuck my stake in the ground of my favorite city and I have never regretted it. I have seen the sun set and rise in some truly beautiful places in the world. I have lost the working function of almost every part of my body at some point, and had the pleasure of watching it all come back to life. I remember learning how to walk. Shit, I finally learned to ride a bike...when I was 35. I have lived almost every day feeling this body and this life as if it was some kind of miracle, even when it seemed almost impossibly small.

It's a good life. I'm happy with it.

I don't feel differently now than I did then, 10 days before my second cancer diagnosis. It is a good life. I know that. I'd like to have more of it. As I told a childhood friend who asked about people's 40th birthday plans:

"Well, I have to have a huge party. I've been trying for 40 since 34."

So this summer, before I turn 39, I will be working hard, and traveling a lot, and I will be stressed and overextended. I will never be one of those parents who is able to give her children a carefree and leisurely summer. They will go to summer school. Our weeks will be hectic. And yet, we will be outside at every opportunity. I will let them stay up late, or eat cereal for dinner. We will be freckley and sweaty and tired and happy. We will enjoy this summer as if there is nothing else possible looming in the future, because as of right now, we can.



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.

Day 1,469: Beauty, Inexactly

A few months ago, I sent out a few requests on social media for people to tell me about an experience they had had with art that was meaningful for them. It didn't matter to me what kind of art it was--I was more interested in WHY the art had affected the person. I received some fascinating responses, along these lines:

it brought me closer to God
it helped me answer the question, "why is this happening?"
it reminded me what a beautiful instrument the human body is
it inspired me to feel the joy and unencumbered emotion I had felt as a child
it uplifted my soul and spirit
it brought me out of my depression and anxiety better than therapy
it made me want to celebrate life with hundreds of strangers
it moved me to tears--the artistry, the passion
it allowed me to give something healing to someone else through my art
it reminded me how it felt to be alive
it changed my view of language
it made me see that beauty can come from pain
it made me want to create art of my own

I have been struggling with my own relationship with art recently, which is why I asked the question. I have always devoured art--words and music especially--for as long as I can remember. I have more poetry books than most people could imagine existing. And yet, recently, I have not wanted to have anything to do with the kind of art I have enjoyed all my life--the deep stuff, the stuff that gave me the moniker of "nerd" forever and no matter how else I might have appeared to the outside world. Instead, today, I want to listen to pop music, read mindless books, watch violent action movies. In the back of my mind, this has bothered me, though I have told myself it was because I was so busy, so consumed with everything that happens every day in this life, with this family, this job, this disease. But it has bothered me because I know that is not the real reason.

I have avoided art in an attempt to avoid feeling like that--like those words above--to avoid feeling things as strongly as I always have, to avoid the message beneath all of those sentiments that were passed along to me: to avoid acknowledging the slippery slope between life and death, joy and grief, beauty and pain.

It is so easy to get lost in everything else that surrounds us--all of this IRONY. It permeates everything. Sometimes it is hard to know if people do things because they like them or because they are engaging in some postmodern riff on other people and what they used to like. I mean, do hipsters actually enjoy PBR? Do they realize that their uncles drank it not out of irony, but maybe because they were broke? Sometimes I feel like everything involving self-expression is just an excuse for irony, and I wonder if people who are growing up today realize that their very real memories will turn into self-aware references years later.

And then--then, I remember art.

And I realize this. We live in a paradox. Our society is filled with so much abundance, and so much poverty. So much privilege, and so much disenfranchisement. Every attempt at eradicating something evil from our midst is met with some form of disdain: we pay wealthy white men to sneer at universities' attempts to get a handle on sexual assault issues on campus because of the "privilege of victimhood" or whatever the hell he said. And while George Will has been penning this reactionary bluster for decades, there is something to the notion that we seem incapable of even taking our pain seriously.

We are so intent on being positive, and happy, we are so obsessed with the rose colored glasses, that I'm not sure it's easy to see beauty anymore. If you feel great joy, or passion, if you are earnest, you run the risk of being teased, not taken seriously, you have a lot of eyes rolling at you, and you eventually might learn to keep it to yourself. You want to know: where is the LOVE? in everyday life, where is the intensity, the sincerity?

It is in art. And so often, the focus of art is pain.

Yes, there is much in art that focuses on beauty, and love, and joy. But it is rare that those emotions are expressed in art without some kind of grounding in suffering. Most of the time, we act as if suffering does not exist. We live in a society that seems hellbent on believing that suffering is a character flaw, it is something you choose or something you make up, that it is not REAL, and that if it is, it is a fate worse that death. It is this belief that makes people terrified of illness and disease. My own grandmother was so afraid of her breast cancer that she watched it grow for a year, waiting for it to kill her. She was not expecting her doctor to tell her that cancer doesn't work like that, because:

you have to suffer first.

Art allows us to suffer out loud, without anyone telling us to get over it, without anyone asking us to prove that it's true, without anyone telling us to just meditate, without anyone waiting for a happy ending.

Art gives us worldliness and Godliness. It makes us feel the core of ourselves.

It cannot be made a mockery of, not really, not in the end.

I say all of this as a sort of explanation. This has been my art. I say things here that do not even sound like the person I sound like on the street. People rarely have casual conversations with me and then say "wow. what you just said helped me through my darkest time." "when I read your words it is like reading my own mind, if I knew how to be honest with myself." But people have said those exact things to me about this.

And yet, I have been crowding other art out of my life, because the things I feel when I am honest here, and in the poetry I write that I rarely share with anyone, are painful even when they are good. Every moment of beauty can be a sharp reminder of what I might miss. I start to read wonderful and heartbreaking novels and then I put them away.

And now, now I want my art back.

It is not because I am out of the woods. It is not because I am done, or because I am healed, or "past" cancer, or anything else. It is just because I miss it. I feel alive every time I put one foot in front of the other, I feel the beauty and pain in the insignificant countless times every day, because I have faced death five times, but that is not good enough anymore.

I need to be reminded that other people feel it too.

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.

When I was a teenager, I bought a poetry anthology called "To Woo and to Wed." It is a terrible name for a wonderful book full of poems about love and marriage. As I began to contemplate this "wedding" I am having in the fall to celebrate our 10 year anniversary, I dusted this book off and paged through it to see if I could find something appropriate for the occasion. I may or may not have succeeded in that goal, but more importantly, I found this:

All the pages I had circled back in 1993, all of the passages I had underlined. I found that back then, at the height of my youth, I thought the best marriage poems were the ones about divorce and widowhood. There wasn't a single page marked up in the chapter entitled "So Much Happiness." I was 18 years old. I was in love, though I didn't know it yet. I had been in love before. I had my life ahead of me, all of it, stretched forward like a promise. and these are the types of things I thought were beautiful then:

But let there be spaces in your togetherness
And let the winds of the heavens dance between you.
(Khalil Gibran)

so she wanted to fix a violet moment

of light to keep, a place she'd come
back to alone, wherever she stayed.
(Gail Mazur)

Footsteps become people under streetlamps.
(Douglas Dunn)

...I want things
to happen to me the proper size.
(Linda Gregg)

And yet who believes
that what he's doing now IS his adventure
(John Galassi)

There are many things in the world and you
are one of them.
(Robert Penn Warren)

You are not beautiful, exactly.
You are beautiful, inexactly.
(Marvin Bell)

We have weathered the wet of twenty years.
(Robert Lowell)

Romance is a world, tiny and curved, reflected in a spoon.
(Amy Gerstler)

I'd make you oak and linden as
they were and call the shade a silence in your name.
(Michael Blumenthal)

Orchards, we linger here because
Women we love stand propped in your green prisons.
(James Merrill)

Marriage is not
a house or even a tent

it is before that, and colder
(Margaret Atwood)

the prairie is a livable place, a place
for withstanding all kinds of weather,
and here's to the little hills,
the ones that take you by surprise
and the ones you'll need to invent.
(Stephen Dunn)

Twenty one years later, I find myself dog-earing pages from a chapter entitled "From Grief to Grief," as if somehow that could be an appropriate message as I renew the vows of love I shared with my husband ten years ago. I think of the poem we passed out as a wedding favor then, the poem about eating peaches: "From Blossoms." But what does that have to do with MARRIAGE, people may have asked?

There are days we live
as if death were nowhere
in the background, from joy
to joy to joy, from wing to wing,
from blossom to blossom to
impossible blossom, to sweet impossible blossom.
(Li-Young Lee)

That's what I want. I'm ready for that again, now.

And I found a poem that fits. I'm sure I will write one of my own, but in the meantime, I have found one. It is all of fifty three words. I'll read it to my husband, and I know that people will cry. Without irony, or shame. It's a poem that says, even in the midst of this (all of this, even this cancer, that was only a month old at the time of this photograph), this is what love's face looks like.

Day 1,457: Pride

Parents often talk about being proud of their children. It's a natural way to feel; we are proud of their accomplishments, happy for them as they learn new things, wistful about how quickly they change. I am no different than other parents in feeling this pride. And yet, I doubt I will ever be prouder of my kids than I am at this point in their lives.

Today was awards day at my daughter's school. She received a variety of awards, and I was proud of her. Her last day of second grade is on Friday. My son will "graduate" from the Montessori school he has attended since age two on the same day. I will miss both of these events, as I will be traveling for work. However, I will be here for my son's graduation ceremony on Saturday. That day is also my husband's birthday. There will be talk about what they have learned, how they have grown, and what they will hopefully do in the future. These things are important.

But this is what I want my kids to know:

You are strong and impressive children. For the first half of the school year, your mother was going through chemotherapy for the second time. She had just recovered from cancer surgery when the school year started. She started a new job based in another state right after her diagnosis, and she was busy and stressed and could not take time off of work to spend special days with you. She was sick and forgetful and sometimes even depressed, she did most things the same but not everything. But more than anything, the thing is, she wasn't supposed to do this again. She was supposed to do it once, and be done. You were only supposed to have a mother like this once, back when you were one and four years old.

In some sense, neither of you knows any different. In another sense, you do. This time, you knew enough to know what might happen. You knew that when cancer comes back, that's bad. You knew she could die. You knew it could happen again, and be worse. You thought about death and you shrugged off the possibility of baldness and you asked to kiss a breast that was no longer there and you brought her stuffed animals when she took to bed after chemo. And all the while, you did these things:

Lenny, in the midst of all of this, you didn't miss a single day of school. You got straight As all year (except that one time when you forgot to fill in your journal for gym). You ran the mile faster than any other kid in your class, and faster than a hell of a lot of adults I know. You made new friends. You stuck with chess even though most of the other girls dropped out and you didn't really like it. You went with two boys from your class to the next level of math. You continued with gymnastics and swimming and you can still do as many pull-ups as your dad. You only had one meltdown at school that I know of, and you dealt with everything so stoically that the teacher didn't even realize why you were having it (it was a chemo day, remember?). You didn't talk to a therapist or the school counselor even though we offered, and that was your choice, and while we knew it would have helped you we also knew that sometimes, kids need to do what they need to do. We didn't want to proscribe problems for you. And yet, to whom could you talk about all of this? What friends, what adults, outside of your parents, could or would talk to you about the things you feared the most?

Augie, in the midst of all of this, you overcame some of the issues you had had before cancer reared its ugly head again. You caused a lot of trouble at school, and then, just like that, you stopped. You started to listen. You concentrated on your work, even when you had night terrors the night before and must have been completely exhausted, physically and emotionally. You learned how to read, and BOY did you learn how to read. You can read many of your sister's books today. You played your first team sport and we had the joy of watching you dance and wiggle with happiness the entire time you played baseball. You did go to a therapist, and talked about other things. You got unbelievably angry, at yourself, at your parents, at cancer, at the world, and you learned to let it go. You fought demons with a fierceness I have never seen before in a real live human being, and as soon as cancer was "gone," those demons were gone too. You don't kick and claw your way through your sleep anymore. You began to draw, to really sit and concentrate and utilize beautiful colors and let the rest of us into that fascinating place that is your mind's view of the world. And you carried this weight around, like it was almost nothing--this weight you only recently voiced, that you believed I had cancer because I had you.

I am not sure I can take credit for anything, for either of you, for any of this. If I can, it is because I didn't know what else to do but be myself. I could have been more nurturing with you, I could have hidden the reality from you, but I didn't know how to do those things, so I didn't. I am sorry and yet so proud of how well you handled childhood and how you stuck together in the midst of all of these adult problems.

You have taught me things. One of the things you have taught me is that you do understand what the important lessons are. Way back at the beginning of this, almost a year ago, Lenny, you told me that I had taught you something, and it was something I guess I had taught you all along, all your lives. You looked me right in the eye and shrugged your shoulders as you said it: "What? Mom, you taught me that."

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.

Day 1,445: A Letter To My Son on His Fifth Birthday

Dear Augie:

Today you are five years old, and I am writing you a letter. Someday you will come to realize that most of that time that I spent tucked away in the house somewhere writing, I was writing a long, long letter to you and your sister. I wasn't writing it for the normal reasons that sent other mothers to the far reaches of the Interwebs to divulge the secrets of their souls. I was writing it so that you would know me, in case you would never have the chance to know me, because I died before you were old enough to remember me. I was writing it so that I could keep telling you stories, even after I was gone.

That sounds like a cryptic beginning to a letter to a boy who has not yet started kindergarten. And yet, that doesn't concern me, because the hard truths of life have never been far away from you, and you have never been unwilling to admit to them.

Long before I had cancer, when you had just been born, your father and I knew you were an old soul. When you were just a month old, he turned to me and said, Kate. I think he's been here before. And there we were, a couple with no spiritual life to speak of, only half-jokingly discussing who you were before your reincarnation. After all, what three week old baby laughs, a full belly laugh, practically slapping his knees, while he dreams? Laughter is tied to memory, and that is the reason that most very small babies cannot laugh--what do they have to remember? What could be so funny, in less than 30 days? Our guesses as to who you were in the past have evolved with your antics, but we know for sure that whatever life you lived, you had a damn good time.

Of course, life isn't always a good time.

When you were not even one, I had to stop nursing you. You know that by now, if you are reading this; it is a theme of this long letter. You might also know, but you might not, that when I was first diagnosed with cancer, I never once cried around your sister. She was four, and felt everything and understood everything so keenly. I am admitting to you now that I cried around you. I took you for walks in your stroller, and I cried. I talked to you, the way I always talked to both of you when I walked you in your strollers, about whatever was on my mind, as if you were just tiny versions of adults, which, of course, you were. But I also cried, and you would just look at me, and while I told myself that you were a baby and you would never remember your mother crying in that desperate and ineffectual way that she cried in short bursts that came out of nowhere, I knew even then that you would remember. You probably don't know that I chose my surgery path in part because of you. How could I justify a longer recovery period that would stop me from being able to hold my infant son if it wasn't medically necessary? I held you within two days of having my lumpectomy. I couldn't move my left arm, but that was no matter. I have a video of your sister taking her first steps, and I don't have any memory whatsoever of you learning to walk, as fogged as my mind was by grief and chemo and fatigue. Your second year of life was a hard one, but we got through it.


(the last time you ever nursed, on Mother's Day, 5 days after my first cancer diagnosis)

And then--well, and then. We had to go through it again, but this time, it was you who was four, who felt everything and understood everything so keenly. It was you who had night terrors, who began nonchalantly talking about death, and God, and what came before us, what is left when we die, it was you who asked to kiss my missing breast to make it feel better after this round of surgery. I thought I had spared one of my children the memory of this mess, but I was wrong about that too.

Having a mother like me has had its benefits, I suppose. I taught you how to throw a perfect spiral. You appreciate bald women and think they are beautiful and normal, and you probably always will. Having me as your mother means you haven't had to be afraid to talk about things that mothers and children dance around, like illness, aging, death, the world's unfairness, and fear. I am the mother who ignores advice about how to raise a son, how not to crush your spirit and ruin you by assuming you could sit still and behave, because I know something that I do believe you know but not everyone knows. Yes, you are a boy. Yes, you are willful and defiant and easily distracted and you hate sitting still and you are aggressive and loud and funny and you get a lot of attention and you love to shake your little booty and you are always one step away from trouble.

The thing is, Augie, I knew a kid like that.

And no, it wasn't your dad. Haven't I asked you a million times why I am always the one to finish eating first? Because I don't like to sit still either. I've just had to learn how to both be myself and follow some rules, like sitting my behind down at the dinner table. It's hard, but it can be done.

You and I are so much alike that I know damn well that I need to tell you that you don't get to act however you feel like acting, however nature tells you to behave. I didn't get by with it, and neither will you, and not getting by with it didn't ruin me or break my spirit, and neither of those things will happen to you, and hell yes you can sit down and read. I knew you could, but you just didn't feel like it. That's all right. For my entire life, my mother, your beloved MeeMaw, called me...Little Shit. So I get it.


(there I am, breaking into my father's briefcase)

And why wouldn't we be alike, you and I? Now is the time, in this fifth birthday letter, for me to tell you something I have never told anyone. You know by now that I saw you, I bore witness to you, when you were just an egg. I saw the egg that became you on an ultrasound machine during a doctor's visit to discuss my secondary infertility, which we now know was probably caused at least in part by breast cancer. I got pregnant with you that night.

And there it is, that out in the open secret:

It is almost definite that the entire time I was pregnant with you, and the entire time I was nursing you, I had cancer. After my diagnosis, after that awful weaning, your father and I painfully laughed about how you always preferred the left side. You literally fed on my cancer, and you thrived.

I brought you to life in the midst of my death.

It's dramatic, but it's true. And it is something you have always known; in fact, you have spent much of your life believing that I had cancer not in spite of giving birth to you, but because of it. So, while my body was turning on itself, it nourished you and enabled you to become a real person in the world. You have always--ALWAYS--been a person that understood that life and death are opposite sides of the same coin, because that was the environment in which you were born.

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.

But there are things that I think about that I very rarely say, and I am relieved that I don't need to say them, because someone else who has not yet learned what he is supposed to say says them for me.

Like this: the day of Lenny's 8th birthday party, which might have been the last one when the older kids still tolerated your presence, when you thrilled at the prospect of spending the afternoon with those kids, yelling and showing off and having the time of your life and then collapsing exhausted into bed and exclaiming this was the best day ever. And then your father, telling you to wish upon a star. And you, getting quiet, pensive, almost shy. You, claiming you could not tell him what you wished for, and him saying that was up to you, though if you wanted to tell him, you could, because you could tell him anything. And in the midst of your best joy, you were thinking this:

"I wish we didn't ever have to die."

You were saying to us, this love is painful with its goodness, these moments are more perfect for having been lost, right from the beginning.

And you were right. And me too. I think things like that too. Augie--I wish, I really, really wish. But know this: me first.

I love you.

Happy birthday.

--Mom

Day 1,432: Following Up and Following Through

This past week, I had the pleasure of having three follow-up appointments for my cancer recurrence. The first was the most dreaded--the annual mammogram of my right breast. I don't have a left breast anymore, so I'm off the hook on that side, so to speak, but I will still need to have yearly scans of my healthy breast for the rest of my life. I wasn't really concerned about having an abnormal mammogram, as I have never felt anything odd on the right at all. But the whole experience is nerve-wracking for me, as the very first mammogram I ever had was just to confirm my cancer, and I don't trust the damn things, as I had a clean one last May on both sides and then was diagnosed again just two months later after discovering the lump myself within weeks of that clean scan. I mean, hell. Even after they FOUND my tumor on ultrasound, and threaded a goddamn wire INSIDE OF IT, they could not locate it with a mammogram. So I get anxious. I yell at people in my house for a few days. I sit in the waiting area and my husband texts me knock knock jokes and I simultaneously want to kill him and love him for trying to help me through it.



This time, I was called back for an extra picture--they had only taken two. I was used to getting at least 8 or 10 on the cancer side, so this just seemed like nothing. But getting called back, after having cancer, is a surefire way to go on the verge of losing your shit. The technician just tried to casually tell me to take off the gown etc. and I glared at her. I asked "why did she call me back? What did they see?" I might have been standing there half-naked but hell if I was going to move if she didn't tell me SOMETHING. So she said the radiologist wasn't really worried, but I still have dense breast tissue so she just wanted one more to make sure she could see anything, given my history. And within about 90 seconds of walking out of that room, I received my results. That's one thing--they don't make you wait for results if you've had cancer. They know you might trash the joint if you have to wait. The technician told me I looked great and handed me that piece of paper. For the first time ever, I read the following words:

"Your mammogram shows no abnormalities."

Once you've had breast cancer, the cancer side will never, ever show up with "no abnormalities." You might get "findings that appear benign," but you will not get NORMAL. Many women who have NOT had cancer never get that.

So, my right breast just continues to be its helpful, cooperative, perky, nippled self. I'll go on the record saying that I'm glad I didn't cut it off--there was no reason, genetic or otherwise, to do that.

After the relief of that visit, I went to my oncologist. I had graduated to yearly visits to him as well last year, but then I had a recurrence, and I am back to every 3-4 months for the next several years. He's just so affable with me now, when he had been so...otherwise the first time around. It's like we're buddies who play poker together. He did the breast exam, felt my arms, listened to my heart and lungs, felt my abdomen and throat, looked into my eyes. It's like a normal physical except I know what I know: He is looking for another local recurrence, signs of lymphedema, heart trouble from adriamicin, breathing problems from lung mets, possible liver or brain mets.

You know, casual.

Having found nothing, having marveled at the continuation of my completely normal menstrual cycles even after all the D&C bullshit, we were basically done. No blood tests, no scans, nothing. I learned long ago after screaming at him and forcing him to just TELL ME WHY, that I would never get blood tests or scans unless I showed symptoms because it wouldn't do a damn bit of good and no test could predict mets, only diagnose it once it had already happened. And the unspoken follow-up to that statement is that once mets is there, it will always be there.

So we were done. And I told him about how distracted I've been feeling, and that I might want to talk to someone. He said that was reasonable and there was no reason not to do it, but that I could also give myself a break. I said I got paranoid about not taking carbo and he insisted I should not feel that way, that I made a good decision, that the old chemos like the one I did come back into the forefront. I asked if I should take vitamins, and he said I should--if I like taking vitamins. I asked what now--what do I do? He shrugged. He told me to exercise and try to eat well. I said that I've been having a drink whenever I want to have one, in part to calm down, and he said "well then that's why you can't lose the last 8 pounds!" (I had complained about the chemo weight that I can't seem to lose). I sheepishly said yeah, I know. And he responded:

"Now you realize I didn't say you shouldn't do it. (laughing) Life is important. Do what you want to do. It's a tradeoff. Maybe the weight is worth it--you look fine, you look great. You deserve it."

But doc if I drink, I mean...

"You are not going to rock the boat. That's not what's going on here. Enjoy your summer."

And then I went and bought my first new car. And by that I mean MY FIRST NEW CAR. I got my driver's license on my 16th birthday at the tail end of the summer of 1991, and I have never, ever had a new car. I never have cared about cars or seen them as the playthings they are for other people. I guess that's because I almost got killed by one when I was nine. The sex appeal has just never been there. On the other hand, I did harbor some love for the car I learned to drive on, the ancient Delta 88 Olds my mother had bought a few years before with the electric seats that was laughably huge for my 95 pound self to be driving. I called it The Ogre. I loved that car for enabling me to be alone. I remember so clearly how anxious I got toward the end of high school when things were so bad at home and in general and I would get in that car and drive somewhere and just sit there, smoking a cigarette I had stolen from some adult because hell if I ever bothered to get a fake ID. And eventually I would feel that calm. And I would laugh at myself--that kid who didn't even inhale or drive fast.

After that car, I never cared about another one. My grandfather gave me his old Dodge Neon when he was told he could no longer drive at age 90; I was 25 and had relied on public transit, friends, boyfriends, etc., for years. We bought our minivan when Lenny was one and we were in the middle of renovating the kitchen in our old house to the tune of $25k, but I heard of this local family who had had their SIXTH CHILD WHO NEEDED A CAR SEAT and so a minivan was no longer good enough and they needed one of those kidnapper vans, and we got the damn thing for $9k which might have been the best deal in the history of used cars. I mean hell, that was 7 years ago and the thing shows no sign of failing anytime soon. When Gabe was a young man with a paycheck and high expectations of his future, he bought a car. At the same age and stage in life, I bought...a condo. I made tens of thousands of dollars on that condo without lifting a finger in just three years, and his piece of shit car is still sitting idly in our garage. But we do have the memories--when we were dating, he used to carry me to the car. Just pick me up and carry me, for blocks sometimes, and I never really knew why. We had our first kiss in that car on our first date. We drove that car home from our wedding. We brought Lenny home from the hospital in it.



But it is still a piece of shit, albeit one that at least represented Gabe having a clue how to buy a new car. The whole idea has just stressed me out, like everything else has stressed me out if it involved making a decision recently. But I walked out of the oncologist's office and said, screw it. We're walking to the dealership. We didn't even have a checkbook on us. Hours later, I drove that car across the city in the rain to my house. And I felt calm, and I realized I could still make decisions and do things, and I realized that maybe some of my recent mental paralysis might have been due to my follow-up appointments, my 4 year cancerversary, the reminder of the clean mammogram that meant nothing last May, the upcoming anniversary of cutting off my breast and starting chemo again.

I mean, really, who could blame me?

So yesterday I had my follow-up with my surgeon, who is an extremely personable, kind younger woman who talks to me about our kids and had to break the news that she was moving to Michigan, which I knew already, since my oncologist had told me. She said a bunch of surprising things to me. She told me I had a great year, that I looked amazing, that everything was good, that I was done. She looked at my reconstructed breast and asked if I was happy with it. I said, well, considering what I wanted was to look normal in clothes...oh wait, no, I didn't want it at all. I mean since I didn't have to do more surgeries, and it's doing its job in that I can wear all my normal clothes and bras and swimsuits, yeah, it's good.

She was so pleased. She told me that the plastic surgeon had just done a one step reconstruction on another patient when I came along, and most surgeons aren't willing to do them but she knew I was the right candidate. And why not? Why worry about one more thing, about your clothes fitting, about a prosthesis? You did the surgery, bam, you were done. We talked about the necrotic flesh that cropped up right after the mastectomy that had to be scooped out and she was on vacation at the time and didn't even know it had happened. She told me she was freaking out, panicking when she learned, and there I was, matter of factly laughing about it. She said, I mean, you put a bikini on two weeks after your mastectomy. That was amazing. I will never, ever forget that.

We got into conversations about plastics, about how people confuse surgery that is medical with surgery that is cosmetic. She told me that if I couldn't lose the chemo weight, that was my body's way of telling me I was too skinny before, and I should just go with it. She sounded genuinely shocked when I said I thought I might need to see a therapist--but you are so GROUNDED, she said. You handled yourself so beautifully, you took care of everything right away, you just powered through it. You made great decisions, you asked great questions, you seemed less surprised than the rest of us.

All of that is true. I told her, well, cancer wasn't my first trial. Hell, this cancer wasn't even my first CANCER. There was nothing to do but get it done.

She began to tell me a story of a woman who was completely losing it that day upon learning of her 5 cm tumor. She was hysterical, she wouldn't leave the office, her husband wouldn't look at her or speak to her. They have small children and she hoped this woman would GET IT TOGETHER. I said, well, she won't have a choice. You just said her surgery is in two weeks. It will be real enough then. Let her rave a bit.

She didn't understand it. I don't either, but I am not that woman. I am this woman. My methods and reactions are not necessarily better, but I honestly couldn't be different if I tried. I envy those who can rave and cry and get lost in grief. I sometimes curse my own calm and rational demeanor. It seems absurd given the circumstances.

And then I told her that I worry about my chemo choice and she told me something I never knew. They had considered me for a trial, without telling me, that involved 5 chemo agents. They had like a day to decide if they should mention it to me and they decided not to, as I wasn't keen on big amounts of chemo. Her friend, a woman like me, with a 1 cm TN tumor with no node involvement, was put in the trial.

That woman is now dying. She has been given a year to live.

Of course, she is not dying because of the trial. She is dying because her cancer is that aggressive. I think this was supposed to make me feel better, to make me realize that there is no miracle, that I made a good decision. I was supposed to feel better because, my surgeon said, I was DONE. My cancer was not like that woman's cancer, for whatever reason. It was almost a year later, and I could be considered cured.

Cured. She said that.

She said that if it were going to come back, she thought it would have by now.

I just smiled.

How many women with TNBC do I know who thought the same thing, only to develop mets three years down the line? Too many, I tell you. Way too many. I am not in denial. I do not think that because others have survived for years that I would necessarily be one of those women. I know I could be, but I know I could not be, just as easily. On the other hand, my cancer decided to beat the hell out of my left breast with four different tumors and then for some reason has for four years left the rest of my body the hell alone. Who knows why.

Who knows.

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.

I can see myself reflected in that surgeon's eyes when she came back in the room one more time when she didn't have to, shook my hand, said to give her regards to my husband, to have fun with my kids, when she complimented my shoes, told me I could call her if I ever really needed to, even in Michigan, when she gave me the kind of goodbye you can only give to someone who either doesn't have much time left or has way more time than she could imagine:

"Take care. And just do it. Do everything. Do whatever you want."

Day 1,425: Not Your Hallmark's Mother's Day

Mother's Day is a little bit...awkward around here. It always falls just a few days after the anniversary of my first cancer diagnosis. On the day itself, thousands of people march past my house for a community breast cancer walk, making it impossible to forget about cancer and the potential death it represents on a day that is supposed to be about motherhood and the joy it represents. Even that event is complicated, as it is not simply painful or a stark reminder of the radiation I did at the hospital that benefits from the walk, the acupuncture I did to make it through chemo on two different occasions. It also allows a chance for me to see how many people truly love and support me; this year, about 50 people have joined my KatyDidCancer team for the walk. Mother's Day is also a reminder of what cancer has taken from us, as I am forced to confront the memory of how I wanted to have a third child, a possibility that my aggressive cancer took from us.

On Mother's Day I think about strange things, like being 35 years old and telling my husband I didn't want him to have a vasectomy because if I died I wanted him to be able to have kids with someone else. I remember his anger when I said this, and I remember not having the heart to tell him that I secretly wanted my kids to have some kind of mother figure in their lives, so my statement was not just maudlin, not simply practical, but actually kind of...hopeful, in the weird way that hope presents itself in our obviously mortal lives.

So, this holiday leaves me feeling ambivalent. I have been a mother for nine Mother's Days, but five of those have been marred by these wayward thoughts.

Wayward seems to be the way of things around here, though, and there are worse things, I suppose. Sometimes the eccentric nature of this little family unit provides some truly insightful moments.

Like the other day, when my son, who will be five in a few weeks and has lived almost his entire life with a mother with cancer, was talking about a baby who needs to have heart surgery. I asked if he was worried about the surgery, and he said no, but he thought it was weird that the baby needed surgery. And then this conversation happened:

K: Yeah it is sad when such a little baby needs surgery.
A: Plus, he's a boy.
K: Huh? What do you mean?
A: Well, it's usually girls who need surgery.
K: That's not true. Why do you say that?
A: Because girls are the ones who get cancer.
K: (long, long pause): Well, first of all, the baby doesn't have cancer, and that's not why he needs surgery. People have surgery for all kinds of reasons. I've had four surgeries that had nothing to do with cancer. Your dad has had two. Second, why do you think girls are the ones who get cancer?
A: (shrugs): Because girls are the ones who have babies.

Long, long, pause.

K: OK. Do you think I had cancer because I had you?
A: (shrugs)
K: (lying, because for all we know, pregnancy is exactly the reason I had TNBC, but how in the world could he know that?): My cancer had nothing to do with you. Nothing. People have babies every day and don't get cancer. And besides, men get cancer. Kids get cancer. Look at me. My cancer has nothing to do with you.
A: (humoring me) OK mom.
K: Go to bed. Give me a kiss.

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.

Day 1,420: 4 Years Later

Four years ago today, I got a phone call.

You know the rest.

What should I say today? If life were different, I would be celebrating four years cancer-free, kicking cancer's ass, and all of that. I would be one of those women who gave other women who are newer to this disease something to look forward to in their hazy and uncertain futures. But, life is what it is, and I am not that woman. I have not been cancer free for 4 years; it's possible I was never really cancer free. It's always possible--always, for all of us who have had breast cancer--that I have cancer right now.

But, you know, four years ago, I got this phone call.

I had a baby at home. I nursed him five times a day. My daughter was just four years old. I was so fit and healthy and alive and, yes, even young, unlike how I feel today, when it seems that the most recent round of treatment added years to me, at least on the inside. During that phone call, the pained, cracking voice on the other end of the line told me that I had cancer, but not just any cancer. I had an aggressive and difficult to treat cancer (though she didn't use those words, not that day) that would necessitate extensive chemotherapy.

And then all this shit hit the fan.

So what is the punch line?

The punch line is that four years later, I am still here.

Things didn't go the way they were supposed to go, but they never really have, not for as long as I can remember. Sometimes I am forced to realize that no matter how hard it's been, going through this hasn't been as hard on me as it has been on other women who experience breast cancer as one of the first truly physical trials of their lives. I never had a lifetime of health and physical ability and overall attractiveness to lose. I had epilepsy, I foamed at the mouth and convulsed in front of the entire sixth grade, I was disabled, confined to a wheelchair and kicked out of school because of it and forced to stare down the adults who looked at me with disgust. So cancer wasn't the first trial, and I knew how to handle some of it.

This second cancer has been different, however. There are some who could handle the first cancer with us, but abandoned us with the second. Some have grown tired of it, some fear what this represents--the reality of not always WINNING, no matter how much you might deserve to win, no matter how hard you try. Some cannot accept that bad things happen to good people, and so often, they happen again and again.

And so we have been lonelier, but more sure of those who are still around. We are more resigned, but also more...SOLID. We might have some PTSD, but we are still trucking along.

Four years ago, I got a phone call.

It would be easy to say that I never thought I would get another one like it, but that would be a lie. I knew that second phone call could come, and others that could be much worse.

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.