Day 966: Love in Cancerland

This is my third Valentine's Day since being diagnosed with breast cancer. I've never written a Vday post before, because there's not a lot that the holiday has in common with cancer. I've done my share of writing about how cancer affects marriage, sexuality, and romance.

I'm essentially lazy these days, so I ordered my husband some chocolates, which I have enjoyed as much as he has, and I bought him the one card I could find at Walgreens that didn't suck. And I wrote him this. Happy Valentine's Day, babe. May we always remember the various ways that love shows its face. Oh, and for those who are concerned about what I wrote in the last post, my boobs seem to be calming down these days, and I don't anticipate needing to go to the oncologist anytime soon. And that, my friends, is a good Valentine's Day present.

Summer Love
by Katy Jacob

In the heat, I stripped off my clothes.
You stood behind me,
touched my face, bent over me, got to work.
The kids slept soundly upstairs.
We were alone together,
in the basement, in the bathroom.
Underground but the humidity still seemed to rise.
Even the mirror began to sweat.
I stared straight ahead
at our reflection, an image of ghosts.
You couldn’t help but cry.

Lost in ourselves, a series of vignettes:
You reaching for
a disposable razor and
a 79 cent can of shaving cream.
My eyes getting bigger,
if only in comparison.
Heaps of hair on your arms,
on your shirt, covering the floor.
The virgin skin of my scalp
unmarred by nicks, or blood.
The small clock laboring in the
slow motion eternity of its ticking.
The midsummer darkness descending.

If I were to write a poem,
I would include these details.
But were I to grow old,
I would remember only this:
Your perfectly steady hand,
being as careful with me
as if I were your child.

Day 850: What We Keep Inside

The other day, my daughter told me that she had a surprise for me from school. I assumed she had made me something in art class or that she wanted to show me a spelling test. Instead, she handed me a small pink bag with a pink ribbon pin and a small card inside of it. I asked her where that came from, and she told me her teacher gave it to her. I didn't get into it at the time, because she didn't seem like she wanted to elaborate. Today, after Gabe and I returned from a wonderful night away in Union Pier, Michigan, the following conversation ensued:

K: How did your teacher know I had cancer?
L: Because I told her.
K: Why did you tell her?
L: We watched a video about kids and adults who had cancer.
K: Wow. What did you think about kids having cancer?
L: (Shrugs). I don't know. I hadn't thought about that before the video.
K: Well it doesn't happen very often.So did your teacher ask you if you knew anyone with cancer?
L: No. When we were watching the video I was thinking about you.
K: OK, so then you told her?
L: I told her the next day. She gave me the surprise because she said she had bought presents for people in case there was anyone who had a family member with cancer.
K: That was very nice of her. Do you remember when you found out I had cancer?
L: No.
K: You don't remember anything about it?
L: I remember when you had surgery the first time. Meemaw stayed with us at our old house.
K: Were you worried about it?
L: Yes.
K: Why?
L: I didn't know what it would be like.
K: What what would be like? The surgery?
L: The whole thing.
K: Did it bother you?
L: No.
K: Nothing ever bothered you?
L: I remember when you didn't have hair. That bothered me. I liked it better when you had hair. It looks better.
K: Do you remember anything else?
L: I remember that we ordered food or other people cooked food for us a lot.
K: Right. Were you worried?
L: No.
K: I just ask because a lot of kids worry when their parent has cancer. Do you ever think about it?
L: No, I never think about it.
K: OK. So...do you not like to talk about it?
L: I don't want to talk about it.
K: Fine. Time for dinner!

Oh, how they fib, how they hide their feelings from us in order to spare us, even at six years old. I know very well that Lenny remembers almost everything about the entire ordeal of my breast cancer. She brings up random memories all the time. She still sometimes uses cancer as a measure to remember when things happened: Oh, that happened before we knew you had cancer. That happened when you were bald. We didn't go to that party that time because you had cancer.

She was the four year old who at day 25 of radiation said this to me: "Mom! Only eight left!" Because she had been counting down backwards from 33 and she had never told us that. She even correctly removed the weekend dates from the equation.

Lenny refuses to cut her hair these days and I know why. She asks me all the time when I will grow my hair out. She tries to console Augie when he gets fixated on death by bringing up my cancer, and using it as an example for how bad things can happen that don't always kill you. She will even qualify those statements with things like "well at least not right away," no matter that we have NEVER discussed cancer returning with her.

Obviously she thinks about it. She waited a day after the video, cornered the teacher when she was alone, and told her about it. Obviously she worried. She cried, she was angry with me, she gave all of the kids at preschool tutorials about chemo. She talks about "the first surgery," knowing very well that there was a second one.

Lenny remembers everything. It's one of the things that makes her Lenny.

I have noticed since she has started first grade that she keeps things from us. She gets a bloody nose, is sent to the principal's office until it stops, and I find out about it from another kid's mom. Boys call her names or give her noogies and I find these things out eventually, but not right away. When she does tell me these things, she is honest about whether or not they bother her. But the rest is just a cloud of omitted information, the kind that she used to provide without being asked, in full detail. This is a part of growing up, and it doesn't bother me, considering how I swear to God I never told anybody anything that had much import--not my mom, not my closest friends--when I was small.

I remember that feeling, that desire to shield the world from the things that I knew were problems, in order to spare them the notion that my life was not so innocent after all. I knew that I was a child, and that children weren't supposed to think about such things or have anything bad happen to them that they would then think about, and I wanted to protect adults around me from the knowledge that that wasn't true. And now I have this child who has always hated conflict--ALWAYS--even when she was just a tiny kid. She gets scared at the most basic animated movies, not during the scary parts, but when people or animals do something that would get them in trouble. She's been this way since she was less than a year old--the thought of negative consequences must just hang over her like a cloud. It's funny, because no one ever got in trouble in our house until Augie was about two years old. I don't know where that came from, that extreme conflict-avoidance--but I do know that she uses it still.

I ask her these questions in a seemingly offhand way and she knows it's not offhand, that this is some serious shit. So she shrugs, feigns amnesia, tells me it's nothing.

That's ok. Lenny is fine, she has handled everything very well, and she will continue to tell people things about it when she needs to, as she did last week. She's little. She's my kid. I have no idea what else to tell her about it outside of what I told her in front of 300 other people that one day in May.(If you want to see the video--here it is!) This whole thing has made me realize that I really need to revisit my Cancer Mentors idea. If a four year old, or a six year old, can hide things so well, Lord knows what teenagers are thinking.

When it's a kid in your own family, you can only hope that she talks to you when she needs to, that you have made it clear that it's ok, and that some other adult with a little bit of distance has the wherewithal to bring it up. And then you can let it go, and not say what you wanted to say when she told you about that cancer video, because you know the sentiment would make her squirm:

Oh honey, I was thinking about you too. No matter where I am. No matter what.

Day 803: An Ode to Anyway

Wow, that title throws me. It's been more than 800 days since I was diagnosed with breast cancer. Looking at it from that vantage point, it seems like 800 days is nothing. The time has flown. It has crawled. I've wanted to stop time, slow it down, speed it up, just generally do impossible things in the space-time continuum, for a variety of reasons. Time, and the things we do with it, has been important, and it has been irrelevant. Days and milestones come and go.

I guess I should have written a blog at 800 days. Or, when it was the 2 year anniversary of starting chemo. But I didn't. I was occupied with other things. But I feel some urge to make up for those things, so here I am, writing a blog almost exactly two years after preemptively shaving my head before chemo took my hair away.

I don't have a lot to say about that experience that I haven't already said. I wrote a blog the day I shaved my head, , the day I made Gabe bic it smooth for me, and last year on July 15, 2011, when the memory was raw enough for me to acknowledge the anniversary. There's nothing more for me to add about actually being bald.

I can say that I learned some things. I learned that in some ways, having an extremely distinguishing, highly-appreciated characteristic, such as beautiful long red curly hair, can be a crutch, a burden, and a gift all at the same time. It can prepare you for rudeness, for people staring at you and then looking away. You learn an early lesson, which is that people are weird, focusing so much on some dead shit you didn't do a damn thing to bring into the world. Having something like that teaches you the importance of real compliments. My mom always taught me to give compliments based on things people could control: their style, their personality, their skills. Never give a compliment based on looks. People don't choose their DNA. I can't say I entirely agree with that; but I remember how uncomfotable it felt to have strangers (mostly white folks, I will admit) tell me I had a beautifully shaped head, and how satisfying it felt to have strangers (mostly black folks) tell me things like "that haircut looks good on you" and "I like your style" when I was walking down the street or standing in checkout lines while completely, utterly bald.

I mean, I didn't choose to be bald. It was horrible to shave off all of my pretty hair. But, in the end, I chose to walk around the streets of Chicago like that, like it was nothing. Once I was in the throes of chemo, I could have made a different choice, and it would have been fine if I had. But I will always remember getting those nods of appreciation for a decision I made. And the memory will feel something like pride.

I will always live in the house I built, the one where my three year old son sees a picture of us both bald, and when I ask, hey don't we look alike? he acts confused and says no, in that picture I'm a baby. You're a mommy. Yeah, but we're both bald, I remind him. What's bald? When you don't have any hair. Oh, ok.

Like that's nothing.

Because, you know, it is.

Don't ever tell a cancer patient it's just hair. Because it's not.

But it is. And one day, they will see it that way, and they will have earned that statement in a way that you haven't.

Hair, and breasts, and walking around without pain, and having normal toenails, and waking up in the morning and never feeling surprised--in this house, that's nothing. That's not the important stuff.

I live in this house now, where my hair actually looks stylish but every once in a while my husband runs his fingers through it and I see a wistful look on his face.

Because he's remembering how much he loved to touch my head when it was bare.

I live in this house, where it's hard to catch my breath sometimes, and my heart races when I get up too quickly, but I go to the gym in the 100 degree heat anyway.

I live in this house, which was probably an idiotic thing for us to buy more than a year ago, right around the time when I wrote my most googled blog of all time, and I love it every day with an irrational love that's all tied up in hills and bookshelves and floors that are beautiful when we never expected them to be anything but ruined.

I live in this house now, and it's a different place than where I lived two years ago. I don't miss my old house, but I do pass by it every once in a while. Sometimes, I even go inside.

They say that true courage is not being unafraid, but rather being afraid, and doing things anyway. At many different points in my life, people have told me that I was courageous by this definition.

I don't intend to argue with such a real compliment. But I've learned some things. One is that courage is beside the point. There's nothing else to do but do things anyway. Sometimes you are afraid, and sometimes you are not. Sometimes you have hair, or legs that walk, or a highly-functioning heart, or lungs that take in air easily, or cells that follow the rules. And sometimes you don't.

Here's to doing stuff anyway.

(Including, incidentally, Twitter. Follow me @KatyDidTweet. It scares me, but I'm doing it).

Day 740: Walking for Breast Cancer...Every Day

Yesterday, our family participated in our third annual Beverly Breast Cancer walk. Though we had lived in the neighborhood for years before we walked the first time--five days after I was diagnosed with breast cancer--we had never participated. I didn't know I had cancer when I signed up the first time. I do remember saying something to Gabe like "well, I guess it's good we're doing this. You know, just in case," after I felt the lump in late April. I didn't realize then what was coming, of course. My mom joined the four of us (Augie wasn't even a year old so he was in a stroller, but I honestly don't remember whether 4 year old Lenny walked or went in a wagon) and we did the three mile walk in our neighborhood, literally in a daze. The day before, I had nursed my infant son for the last time. I made Gabe take pictures so we would have that to remember, but I was so sad about what we were losing, and why we were losing it, that I hardly even remember doing it. So, during the walk on Mother's day in 2010, I basically stumbled all three miles, trying not to cry. The whole thing was awful. All of these people were laughing and waving pink flags and talking about saving the tatas and all I could think was that I was going to die. And that someday my kids would join that walk carrying a sign in my memory. I just wanted to disappear.

Last year, things were obviously a bit different. I looked very different, for one. I had hair, but not much. I was done with cancer treatment, not just on the cusp of starting it all. We had a team of 15 or so. Gabe was more emotional than I was--he was edgy for days beforehand and got choked up at several points during the walk, which didn't happen to me. I felt kind of...verklempt, I guess you could say, when I picked up my pink carnation from the survivor's tent. It started wilting before we even got home. People need to think these things through.

This year, things were different still. I was kind of looking forward to the walk, since the route went straight past our house and we planned to have a little party afterwards. We were supposed to have 23 people or so on our team, but there were some injuries and other issues and we ended up with 15 again, and a dog. The walk didn't seem so insufferably slow, and it was a beautiful cool but sunny early morning (south side Catholics, man, make us get up for this kind of stuff super early so everyone can make it to church), and it was kind of...fun. I wasn't really expecting that.

I bought a sign for our lawn and had my name inscribed on it. I didn't tie pink ribbons around any trees or write "survivor lives here" in pink sidewalk chalk. Shit, Gabe even forgot to mow the street-side of our front lawn. A friend who was on my team made these great signs that said "katydid cancer. now she's done" and people took turns carrying them around. I got some interesting looks when people realized the woman on the sign was me. I now have one of these signs in my lawn (still unmowed). I didn't get emotional at all, and amazingly, neither did Gabe. Afterwards, I did something I rarely do and actually put two of my friends to work in my kitchen cutting up fruit while I heated up the quiches I had made, fried some ham, made coffee, and got out the bean-corn-avocado salad and the chocolate chip banana bread, not even feeling embarrassed that all of that homemade goodness was sitting next to three store-bought coffee cakes and a cooler full of beer and Mike's hard lemonade...at 10 in the morning.

Then chaos ensued, and the kids played outside for literally five hours. I don't even know how they were still standing at the end of the day. The moms at the party didn't move from our mimosas or coffee or beer. Dads were put in charge, which meant that of all the things the kids could do, they settled on riding plasma cars down the steep hill of our cement driveway until they almost killed themselves on the pickup truck parked at the bottom, and the dads stood there nodding and talking about whatever dads talk about. No one got injured, though Augie and a few other kids did go flying off to the side into the bushes. I just kind of shrugged, thinking, huh, he'll live, but I also got livid when I realized Gabe was calmly CLEANING CHAIRS when Augie was off wrecking havoc somewhere and I was supposed to be off-duty. Then all the dads went to the park with the kids and we moms just sat there in the sunshine. During the 30 minutes the kids spent indoors, they destroyed the house, but I didn't even care. Gabe cleaned up most of it, I went for another, faster, walk, and then Lenny helped me plant impatiens. After that, I took a nap and woke up at 7 pm in time to read the newspaper while Gabe gave the kids showers, before we both put them to bed.

Ah, Mother's Day.

Sounds idyllic, right? No matter that Gabe and I got in a huge fight over nothing the night before, though I'm sure no one at our house could tell that. We were over it, I guess, though I'm still pissed that it happened, because the last few months have been so ridiculously emotional with everything that has happened that I think I should be spared all elements of marital strife. The mammogram, the show, the two year cancerversary--I was like a twig about to snap. Then, I spent my third mothers day since I found out I had cancer walking around my neighborhood to support something I would rather not think about again. Some people get breakfast in bed. I get a huge dose of reality, room-service style, served up to me every mother's day.

Now, don't get me wrong--this walk is meaningful for me because it supports the small local hospital where I did radiation every day for 7 weeks. I would have had a hell of a time if I'd had to commute to a large research hospital to get decent care. It takes longer to undress than to do radiation itself, so the shortest commute is almost a necessity. The radiation oncologist at this place is absolutely excellent, and he has a decent bedside manner to boot. They had that nice spa service while I was doing treatment there, and I got free massages and pedicures for months, which was a great bonus and a nice way to have some "positive touch" while my body was being burned and fatigued. And this hospital could use the money, where the big ones kind of have it coming out of their ears. And it's nice to see everyone in the neighborhood where you live supporting your struggle, even if it's just on the surface. The local Starbucks had a tribute to women with breast cancer and a few folks put my name on ribbons that were displayed in the shop, and I don't even know who did that. Things like that are actually meaningful, much more so than all the damn pink in our culture. The Starbucks thing is also funny, because all of my "names" were there: Katy Jacob, KatyDid Cancer, and even "Katy Sterritt." People will say "but your name isn't Katy Sterritt." Look, I know who they're talking about. Gabe isn't Mr. Jacob, after all, and he always answers to that without an issue. One of our babysitters said to him, you must be Mr. Jacob, and he said, well, I suppose you could call me that. And then we left.

Choose your battles, if you have the opportunity to choose them.

Sometimes, you don't. And you fight a battle that isn't a battle and you fight something that isn't a fight but that's what people call it. It's a disease, and it kills people, 40,000 women in this country every year, and it forever changes the lives of those who are diagnosed with it and are lucky enough to survive. It makes you suffer and it makes you afraid. You walk three miles, something you do every day, and your breast hurts because it always hurts. Your arm pulls because it always does. You are just trying to walk and eat pastry and yell at your husband and put your hand over your eyes when your kid does something crazy and live like everyone else. It doesn't feel like courage, and you don't feel like a badass. The best case scenario is that you feel kind of...normal.

Just kind of, not entirely normal, because people are telling you they are happy for you, and it's your face up on that sign, and your 6 year old daughter knows all about the hospital the walk is benefiting and could tell you all exactly--EXACTLY--what radiation is. You look like everyone else on that walk, you are all wearing the same shirts and your hair is long enough to let you pass, and it's possible that no one would "know." But what is the point of that? So you walk to the survivor tent again, relieved that someone had the sense to opt for ribbons instead of flowers. You are shocked and saddened to see so many pink ribbons, and to realize how many women are walking around who are just like you. A man asks "so who is the survivor here?" and you raise your hand and he tries his best not to suck in his breath and he tries unsuccessfully to hide his surprise because, you know, you're young. And those adorable little children belong to you. And he knows that it's bullshit, because he must love someone who had breast cancer or he wouldn't be working the tent, and he asks you how long. "Two years," you say, somewhat surprised to hear those words come out of your mouth and realize they are the truth. He gives you a high five. And then he looks at you a little longer than he should, and he says...

"You look great."

Because that is just what people say. And something has shifted in you, because it doesn't even bother you. You smile and say thank you and walk home, representing for breast cancer, because that is what you do every day that you can still walk around.

Day 670: Hair Ennui

I think I am having a hair depression. I know, you’re thinking it’s been almost two years since I had long hair, and I should be over it by now. And I truly have brought this on myself, since after my first haircut almost 11 months ago, I’ve continued cutting it every 6 weeks ever since. If I hadn’t done that, I would have long(ish) hair again by now. But I still can’t get used to it—I still don’t think I look like myself, and I don’t care if it sounds vain or petty or irrelevant in light of other things. I still feel like someone else with this obnoxious hair.

Last night I was just disgusted by my unruly short hair. I was looking for an opinion from Gabe, for him to tell me if I should just grow it out or leave it short, if I should cut it into a really short pixie or even just shave it off again. He basically said he didn’t care, he thought it was fine, can we stop talking about it? I wanted to slug him. I could explain why, but at least half the demographic reading this understands why without me explaining. And then, I had a dream about my long hair last night. A Katy-style dream, full of realism, just a sleeping memory, really. I was brushing my hair, and I turned it over, brushed it out, and looked at how crazy it was, how it stuck two feet out from my head. Some other (faceless, nameless) people in the dream commented on it, how amazing it was, and I woke up.

To this crap.

There are times when I still reach back to pull my hair into a ponytail so I can put on a necklace. I still have the instinct to push my hair out of my face. I’m still surprised when Gabe can find my neck to kiss it. While I appreciate that now sometimes I get carded, and people are more apt to actually look me in the eye, I still think I look like someone else.

Gabe of all people should understand this. He sees how it is with our kids. People will literally stop their cars, roll their windows down, and remark on our kids’ hair—especially Augie. Friends have told me I can’t cut his hair because “that’s a part of his personality—that wild crazy red hair is who he is.”

Well, no…not really. He was a nut when he was bald, just like his momma. But I heard that all my life—the good and bad aspects of it. Starting when I was 11 or so I got to hear that fascinating question: “So are you a REAL redhead?” or the cruder variations of the same. Note to all redheads reading this. That question will make you lose faith in humanity and might very well be an excuse for justifiable homicide. You might think that as boys grow up (and it’s always boys who ask this), they will know better. It isn’t true. More than a few grown men have asked me that question. I came up with a response when I was 16 and I have never needed another one. Feel free to use it:

“If that was any of your business, you would already know.”

Bam—done. I got so used to all the clichés, all of the ooh, you’re a feisty redhead, look at that wild hair, you must be a firecracker in bed, you must have given your parents a run for their money, you must be stubborn, wild, hot-tempered, yadda yadda yadda.

And some of it was true, because I was stubborn and a little wild and hot-tempered. And then at some point I just decided it made sense to be those things, but even more so, because it was expected of me. I became that person with the beautiful red hair, the one who got called out without anyone bothering to learn my name. I was that girl who had men running after her on the street, saying, I’ve never seen hair like that before, are you free to get some coffee?

Dude, what, you want to buy my hair a coffee?

And now I’m someone else, and sometimes it’s refreshing, and other times it’s just hard to adjust. I’m not saying I needed that validation, that attention, or the unwanted disturbances into my life, but I did get used to it. It’s already happening with Augie. Women, and little girls, gush over his hair, and he’s all like, yeah, I know I’m cute, want to put my shoes on for me? He uses it to his advantage, where the same attention always made Lenny shy and suspicious. It’s very strange, but there it is. How can something physical become so deeply ingrained in your sense of self? Doesn’t that make you shallow, narcissistic? Well, I don’t think so. I think it just means you live in the world, where all the other people live, including the normal folks and the shitty ones. Ask all the people who never let me forget that I looked different than some other people why they thought I needed to be called out like that, and maybe you’ll find part of your answer. As I said to Gabe last night, so I’m sorry that I lost the one defining characteristic that I had due to cancer, and it still bugs me. Sue me.

Again, I know I brought this on myself. I am too stubborn and low-maintenance about hair to deal with growing it out. I like not having to spend time on hair, I remember how hot and heavy that hair was in the summer, and I don’t really feel like going back. I just wish I could look in the mirror and recognize myself. I’ll get over it—I’m just having this hair ennui, this follicular depression, you know?

It’ll pass. Probably when I give in and get another haircut.

You might think it’s bizarre that I’m referring to this hair dilemma as depression, but I really think that’s what it is. People always worry that you will be depressed when you find out you have cancer. It’s logical, and it happens to a lot of people. I think I can honestly say it never happened to me. I got angry, and sad, and the whole thing seemed unfair and chemo seemed like the biggest pile of bullshit to ever befall a person, but I wasn’t depressed. I was reading somewhere that the biggest sign of depression is being unable to make decisions. I remember going through that in my mid-twenties, though I didn’t realize what was happening at the time. It was hard for me to figure out what to do, things overwhelmed me, and every potential consequence seemed so much bigger than it really was. I was unhappy, and depressed I guess, though I don’t know why. Perhaps I was somewhat adrift, though you wouldn’t have known that if you’d seen me working full time, putting myself through graduate school, dating and socializing, buying a condo by myself, living a grown-up life. I got over it, and I made decisions, and then I felt better. Because I have no idea what to do with it, and it makes me feel sad to look at it, I’ve decided I have hair depression.

Sometimes it is by making decisions that you know who you are and you can place yourself in the world. I found out I had cancer, and I never stopped making decisions. I decided what surgery to do, which chemo to choose, to shave my head before chemo took my hair, to just walk around bald, to raise hell in front of lots of doctors, to write about controversial things in this blog, to switch jobs right after my recovery, to buy a new house when we had no prayer of selling the old one, to keep working out no matter how I felt, to be pissed off when people told me I should be grateful. I never had time to be depressed, frankly. I was too busy hating cancer and trying to reclaim my life.

So the hair thing sucks, but I know there are worse things, so don’t be clueless and tell me that. I’m the poster child of knowing that, actually. I just need to wallow in the hair self pity for a day or so. Then I’ll chop it, be ok with it for a few weeks, and hate it again. The cycle of life.

I’ve been on a roll with poems recently, and this is a blog about making decisions. So I’ll end with this, perhaps to remind myself that there are things that make me who I am that can’t be seen, things that are beneath the surface. There are lots of ways to find out who you are. Eating a nectarine is, apparently, one of them. Happy Tuesday.

Nectarine

I stood in a small sunny room one day in hot summer
and picked a nectarine from a bowl my mother had set on the table--
absently, as if this happened every day.
When I took a bite, I expected fruit, not revelation.
Such a nectarine had never been eaten before,
and surely would never be eaten again.
The dilemma before me was as serious as any.
What to do? Devour it in all its incredibly juicy deliciousness
or savor it, make it last as long as the afternoon sun?

Men have spent years comparing peaches to women’s breasts,
attempting to convince us of the sex in the ocean.
It would be difficult to get it more wrong.
That nectarine! That taste that made me close my eyes and sigh!
I suppose when we make love that is what we are trying for;
we are asking ourselves if it is better to take it slow or fast,
we are hoping to be the best there ever was.

I think there are two kinds of people in the world:
those who place great importance on anticipation,
and those who crave memory.
It is by knowing which type you are
that the dilemma can finally be solved:
Perhaps the taste of sweet flesh over a long,
languishing hour is your idea of perfection.

Or maybe for you, a poem is like a photograph,
a way to remember the heat in the air, the particles of dust floating by,
the smell of toast and furniture cleaner,
the juice dripping all over your face, the stickiness on your hands,
the way the little nectarine shards tried to stubbornly adhere to the pit
as your ripped them off with your teeth until nothing was left
and then—only then, did you open your eyes
and pick up the phone in the kitchen, still sticky and wet,
and when your lover answered and didn’t act surprised,
you knew what kind of person you were, both of you.
It’s sixteen years later, and you still need to tell someone just how good it was.

Day 637: Komen, Planned Parenthood, Women, and Sex

It would be impossible for me to ignore this entire Komen fiasco over the halted funds to Planned Parenthood, even though I would really like to ignore it. So rather than talk about Komen directly, or Planned Parenthood, or abortion or politics or pink, I want to talk about one specific topic:
Sex.
It has to be said—every aspect of women’s health, and often of women’s lives, is often reduced to this. We are sex objects at the same time that we aren’t supposed to actually like sex, or want sex, or make decisions about sex. Someone decides that an organization that provides a wide range of health services for women should no longer be given money, and the underlying reason (regardless of Komen’s overall goal to not give funds to groups under Congressional investigation) is that sometimes—after they have sex—women get pregnant when they don’t want to. If an organization that might save women’s lives is willing to accept this, it apparently does not deserve to exist.

And how does this happen? How do we get marginalized into talking about sex or sexuality when we should be talking about living or dying? Well, here’s an example of how that happens. We find out that we have breast cancer, and it is terrifying, and sad, and unbelievable. And then the world wants to save our breasts. Not US—our breasts. Our tatas. Friends joke about how they would definitely get them both cut off so they could get bigger and better ones for free. Doctors try to lead us to believe that deciding between a lumpectomy or a mastectomy is a “personal choice” that should be based on what will make us feel “more comfortable.” Nurses counsel us on dealing with our body image—or our husbands’ or boyfriends’ reaction to our new bodies—as if following the operation, we will be somewhat less than whole. Because something has happened to those beautiful breasts.

Or, the world wants to save our hair, to protect the world from the vision of a bald woman, through a relentless marketing blitz for wigs and hair coverings. Men cry when they find out our long beautiful red hair will fall out. Women tell us we are beautiful “anyway.” Everyone and their mother tells us “it’s just hair, it will grow back,” as if to say dear God it’s really not just hair, you strange bald freak, and boy I cannot wait until it grows back so I can look you in the eye again. The world even wants to save our faces. We are offered “beauty” classes to show us how to hide the discoloration in our skin left by chemo, how to draw on eyebrows where there are none, how to stop looking tired, how to stop—STOP IT GODDAMN IT! Stop looking sick!

And so often no one thinks, wow, she just lost a body part—she just had an amputation. That must feel different, that must be strange when you move your arm and notice something’s missing. No one says, I wonder if her head is just cold, perhaps I could knit her a hat? No one asks if it hurts, if you’re scared, if you’re still attracted to your husband.

Perhaps it’s too easy for me to say these things. I am sitting here now with a normal head of hair, a remarkably well-functioning body, the same face I’ve always had, and by God a decent looking pair of perky breasts of my own. A little scarred and tattooed maybe, a little dented in one place, but still perky, still mine. But I lost so many things myself, so many things—and none of it felt the way other people thought it would feel. I didn’t feel unattractive. I didn’t worry that Gabe wouldn’t want me. I didn’t think that being bald and scarred eroded my femininity. I thought I might feel those things, I anticipated those losses before they happened, but once I was in it, I didn’t feel that way at all. Because I really didn’t give a shit.

Because I had cancer. And I thought I might die. And I didn’t like being reduced to a perky set of tits, a beautiful head of hair, and a pretty face. I wanted to live and be healthy and know that my body could do the things it could do before I had cancer.

I wanted doctors to listen to me. When I said that chemo-induced menopause was the second most depressing thing that ever happened to me from cancer (after fear of death), when I said that my “impotence” (we don’t have a word for it for women, do we?) made me feel like someone else, when I said that having somewhat painful sex three times a week was unacceptable to someone who had been used to having wonderful fun sex every day, I wanted the doctors to look me in the eye and HELP ME. Not look away embarrassed, make sly comments about my husband, tell me he was a lucky guy, say just wait, tell me well now you know how it is for many women, or shrug and say at least you’re still alive. But Doctor this is crazy! I’m sure your husband understands. Excuse me, is he even here? Has anyone ever told a man dealing with impotence for any reason that it is irrelevant, unimportant, or the least of his problems? (For that matter, has anyone ever told a man with testicular cancer, well, you only have it in the one, but we’re going to take the other one too—you don’t need them to live? Has anyone ever proposed halting funding to clinics like Planned Parenthood because they provide vasectomies? Or pulled ads from NFL or NBA games because one of the players commits a rape?)

I wanted to think that if it is common for women with lumpectomies to have recurrent mastitis due to “mouth to nipple contact” (these MDs apparently can’t say “kissing or sucking your breasts”), someone could have told me that rather than treat me like I was 11 years old. I’m sure that husband everyone always seemed so worried about would have liked that too; he would’ve appreciated the opportunity to NOT pass on to his wife an infection that gave her a 103 degree fever, almost sent her to the hospital, required a 10 day course of strong antibiotics, and made her believe she had inflammatory breast cancer.

What’s more important in the medical field—infantalizing women by doing things like asking their husbands of 20 years to leave the room during breast exams because the staff is too embarrassed, or actually giving us good information and access to care? What person in the world, man or woman, thinks a mammogram is sexual? Why are men—often our closest confidants, the ones who shaved our heads, held our hands while we vomited, changed our bloody post-surgery dressings, and swabbed our hips with alcohol before they gave us painful shots to stop our white blood cell count from plummeting—not allowed in mammogram waiting rooms? Who really thinks that women will feel embarrassed to be around men in their hospital gowns when waiting for an exam that is excruciatingly painful and might tell you that you have a life-threatening illness?

Why is it always about sex?

Or never about sex, when you need it to be?

Women have breasts, and uteruses, and we are the only ones who get pregnant and we are generally the ones who get breast cancer. But as a society we have this need to see women as simultaneously over sexed (pole dancing for fitness, anyone?) and sexually naïve or incompetent (good girls don’t talk about those things!) We hammer information about pregnancy into teenage girls heads, push the pill on every 18 year old in the country, and don’t seem to care what the effects of such decisions are. We don’t care about the side effects, the link to triple negative breast cancer, the insane 80% rate of HPV infection among American women. (Can I get an Amen for being in the 20%? Yeah I was that kid in high school whose keys hung on a chain that said “No condom no way.” And yes, there was a condom inside that keychain). That’s why there are outcries against the only cancer vaccine that has ever been developed, because rather than focus on the amazing lifesaving potential, we are wrapped up inside someone else’s panties, worried she’ll do the wrong thing. I’ll say it again: Lenny, you can decide never to have sex in your life, or start having sex when you’re 13, and I will still love you and want you to live. I will not deny you access to Gardasil in order to protect you from your own hormones, your own desire, or your own life. I won’t do it.

Women are sexual beings, with sexual bodies. So are men. But men get to be just that most of the time—men. They are allowed to be fathers, husbands, friends, co-workers. And on the other side, so often, we get to be wombs, tits, hair, battlegrounds for other people’s repression or cluelessness or bullshit.

That’s what I see when I read an article about Komen and Planned Parenthood. I see myself, bald, tired, scarred up and tattooed, with no eyebrows, suffering from sexual dysfunction, walking around the streets of Chicago in my fashionable clothes, ignoring all the assholes staring at me. Walking around. Still alive. Still worth saving.

Day 494: The Kiss and the Story

For the last eleven days, I have had no inspiration whatsoever to write this blog. Of course, I didn't really write a blog on September 1 either; I just wrote that poem and posted it and decided that would suffice. I started thinking that maybe there isn't anything left to say, so I could forget about it for a while and just lounge on the couch and watch some football, (see what the kids learn from me? Some kids might mimic their mom by playing dress-up, mine sprawl all over the couch during the game), cook some comfort food, and do other run of the mill things.

So why am I sitting here on a Monday night, contemplating writing one of my deepest blogs yet, while watching the game? Well, in part because I can't imagine NOT watching Monday night football if it's on, no matter what, but mostly for two important reasons.

One is that yesterday was the tenth anniversary of September 11. I am not going to attempt to connect the events of this blog with the events of that day. As I will discuss later, I don't take myself that seriously. But I do read the newspaper, and I read the coverage of the memorial services in New York, Washington, and other places. There were so many moving moments, but the one that got me the most was something a teenage boy had written for his dad, which went something like this: "I still miss you, dad. I wish you had been around to teach me how to drive, how to ask a girl out on a date. I hope that my brother and I became the kind of young men you would have wanted us to be."

There really isn't anything for me to add to that, and most people reading this will know why that makes me tear up, beyond just the given feelings of empathy. The second thing that happened is that an old friend and colleague posted the following link on Facebook about Dignity Therapy for the Dying (this is what I love about facebook, that you get to see what other people are thinking about, out of context, and yet it makes perfect sense and you remember what you like about those people, even when they literally live halfway around the world): http://www.npr.org/2011/09/12/140336146/for-the-dying-a-chance-to-rewrite-life

All of a sudden, these two passages converged for me. What is so poignant about all of the memorial statements for those who died on September 11? Well, one of them is the way that loved ones talk about the sudden nature of all of those deaths and the lack of closure. News coverage mentions a woman and her 23 year old sister, a man's 29 year old son, someone's 67 year old mother. But those are their ages stopped in time ten years ago. The present-tense nature of the way these things are portrayed is a brutal reminder that those people did not have the chance to age another ten years, and no one saw it coming.

While everyone who dies is always eternally placed at the age they reached before death, I think it's even more significant when you die suddenly or when you are the subject of unexpected news. That child will always be 29, that life will always be cut short. We conflate this and bring it into our everyday lives. I know that one of the reasons that the friends of my childhood and my youth are so affected by the story of my cancer is that I am literally cemented in their minds as the age I was when they knew me or saw me last. I know that I would feel the same way.

Recently, my mom brought me a few of my formal dresses from high school, thinking I could fit into them. My favorite dress was a vintage, rose-colored dress with a beautiful back that I bought for $35 on the north side somewhere. I couldn't believe I could fit into it. Haven't I had kids? Didn't my hips finally expand when I was 20? Didn't I grow an inch and a half in college? (Alas, the only thing stopping the dress from fitting comfortably is that my damn rib cage grew. It even fit better on my behind, I didn't even have to suck in my stomach, but that ribcage must've expanded somewhere down the line). I know that if my boyfriend at the time or someone else from that era saw this picture of me wearing it now, they would think, that's Katy! 17 years old, in 1992. Because I will always be Katy, 17 years old, in 1992, to some people. That's just how it is. The things you are go back to the way you are remembered.

But it doesn't have to be so static, and that's what's neat about life. If your only sibling dies, are you an only child? You might think you are, but you will never be an only child, because you and so many other people have all the memories of you being a sibling. And if you are alive in the world, you get to age, and people who see you as stopped in time somewhere in your past just have to deal with the fact that that image isn't real. But if you don't get that last glimpse, that closure, if you don't get to see that body or bury that person, time and memory can play all kinds of tricks.

This contrasts so completely with the subject of the other piece, which focuses on the actions of people who know they are dying, who have time to prepare. Normally, when the cheesy question of "what would you do if you knew you only had x amount of time to live" arises, no one gives the option: "I would sit down and write about my life so that I could be remembered and the whole thing would seem real." And yet that is probably the only really true answer that a person could give to that question.

What do these things have to do with me? Well, nothing, really. I don't think I'm dying, not right now, anyway, but having cancer does bring you that much closer to death, or at least to thinking about death. And it makes people say things to you like, well, you might have cancer, but you know you could get hit by a bus tomorrow, we could all die at any time. And you want to smack those people, because of course you know that, and actually you were hit by a car, thank you, and you did have a gun at your head, and you almost died from an allergic reaction to penicillin as a baby, AND you had cancer, so clearly none of these things precludes the others. But the difference is that cancer gives you time to think, to reflect. When my grandmother knew that she had a breast lump when she was 75, she let it go for over a year. She was too terrified of cancer to get it checked out, thinking that having cancer meant that she would die. Her doctor sighed and told her, no Marthagene, it's not like a heart attack. Cancer won't kill you just like that. You have to suffer first.

She suffered more than she needed to, and she also lived another 11 years and died of other causes. But I digress. These two pieces of media converged in my convoluted mind and I thought, isn't that what I'm doing here, isn't that what this blog is about? I have enough presence of mind to realize that even if triple negative breast cancer ultimately does me in, I am alive now and will be for a while. I have time to tell my story. I have always admitted that I write this blog in part as a love letter to my kids, so that they could know me if they miss out on the real, corporeal me. I have also stated that I am doing it to make this real, so that I know that all of these things really happened, because I wrote about them and somehow that makes them true. If not for this blog, morbid insomnia might be some kind of off-color joke, that head-shaving experience might be some kind of dream Gabe and I had in the basement of our old house, and this relatively normal life wouldn't seem quite so marvelous.

I wrote it, so it must be true. I told the story, so it must have happened. Telling our stories brings us back to that basic aspect of ourselves, that somewhat desperate innocence. I knew I needed to write this blog after meeting our new young next door neighbor, a boy who is about ten, who spent at least an hour telling our entire family all kinds of stories, mostly small (life is so detailed at that age!). I realized how important it must be to him to get those stories out, even to us. It was also important to him that we believed him, as if he expected that we wouldn't believe the story he was telling us--about himself, and his life.

And it's important for your life to seem real, to be true. Every once in a while Gabe tells me that I got some detail wrong in this blog. A few times I will reflect back and say, yeah, I guess that happened at a different time of day, that event actually happened before the other one, not after. Other times I look at him and wonder what world he is living in, where he clearly experiences everything in a fog, because I know, I just know, that the way I remember it is true. And I'm sure he feels the same way.

Why do we have this need to tell our crazy stories? Why the task of dying, as the article reveals, that forces us to take stock and come to terms with what we've done with our lives? Are we narcissistic enough to think anyone cares? I remember when I was fresh out of an extremely painful breakup, I said to a friend that the last thing I wanted was to become one of his stories, or even many of his stories. And she looked at me thoughtfully and said, why not? I know it hurts now, but what is wrong with that? That's what happens to all of us, and it's an honor to be someone's story.

Don't I have insightful friends! Of course, she was right. It is equally important to be an actual part of someone's life, but if for some reason that isn't possible, how wonderful to think that someone thinks of you when they could think of so many other things. Perhaps being a part of the story is the whole point. Maybe we need to take ourselves much less seriously, think of ourselves as just part of the play, and try to entertain the audience.

But who am I to give advice? Here I was a week or so ago, entertaining some teenagers at my house, though I was sure they should have had something better to do, and I wanted to laugh at myself as I played at giving advice, as if I know anything at all. At one point I found myself telling them not to take themselves too seriously, not to think that everything matters so desperately. But of course it does when you're 18, right, and death is so far away! Your life is such an important thing, your decisions matter, your love is the only one. And yet, experience does teach you a few things.

I have very few regrets in my life, since I have always laid my cards out on the table, even when it was embarrassing, even when it made me look weak. And different things that I've survived or experienced have taught me not to take today too much to heart. In the middle of wondering why parents in Chicago need to spend a few extra work weeks of time figuring out where to send a child to first grade, I thought, does it really matter? When I was out of school for months after my car accident, I had a tutor for one hour a week--that's it. All we did was math. I liked other subjects more and asked her about reading and social studies and science and she said, you are smart, you can read, you won't forget those things. I pressed her, and she said something along the lines of "It's fourth grade. It doesn't really matter. You'll be fine." And when I went back to school it was as if I had never left.

As I was talking to these kids and thinking about how deeply you feel everything when you are young, I was brought back to the time right before I left for college. I had started dating someone, even though I knew I would leave and move 400 miles away a month or so later. One day we were at his parents' house lying in bed and he asked me if I wanted to go out. No, I said, this is nice, let's stay here. And he said, no--do you want to go out with me? Do you want to be my girlfriend?

In a moment typical of my own innate romanticism, I responded, sure, but I have to go out with this other guy first.

At the end of the day, I dated that guy I had known for a hot minute after high school for more than six years. But who was this other guy, the one I had to go out with first? Well, he was a boy I had always liked as a friend, and he seemed to like me. He played football, we were really different, but we had a great time together and had been lab partners in chemistry. One day I was walking down the street and he drove by, got out of the car, and asked me out on a date in front of all of his friends, and all of my friends, who were all different people. How could I say no? High school was over, none of it seemed to matter anymore.

So we went out, ate some ice cream, saw a movie, and he thought it was funny, not annoying when I talked through the film and yelled at the screen (hey, that's how I grew up). He tried to hold my hand in the theater and that's how I learned you can't squirm out of hand-holding without being a total bitch so you should just do it, no matter who it is. He's trying to hold your hand, not feel you up. You have to let him. Then we went back to his house and talked on the porch for a long time. He drove me home and leaned in to kiss me, and I pulled away, because I felt I would be cheating on the other boy. As soon as I did that, I regretted it, but I didn't know how to fix it. A few days later he moved to New York and I never saw or spoke to him again.

Oh, how serious I thought it was, how I thought it mattered if I kissed him. Of course it didn't. I could have slept with him, and what would that really have done, how would that have changed the course of things in all of our lives? The great part is that wasn't on the agenda at all. This was one of those moments you have in your life where this sweet kid is telling you, hey I'm moving away, and one of the last things I want to do before I go is kiss you, and then you take yourself so seriously you don't even do it. If only we could protect ourselves from ourselves at those moments. Because we can't, we give vague unsolicited advice to kids who look at each other like, this lady's crazy.

But maybe the moral of the story is that the boy in that story won, because here I am writing about him almost 20 years later. Maybe being a part of the story is better than the kiss, though I contend we could have had the kiss and the story, and that is what we should all be trying for at the end of the day. Telling the story is important, but so is living the story before you get to tell it.

Now, do I think that way because I am a woman and I relate to people through stories, not actions? While I scream out after witnessing an incredible 99 yard touchdown run, I am simultaneously thinking about the ways that gender plays out in our very real lives. I am remembering a story I heard from a friend, a guy who had been in a relationship with the same man for many years. He started talking about a trip he had just taken with his sister, and telling this hilarious story about how they suddenly were attacked by vampire bats. I was just about on the floor laughing, as was my other friend, when I realized he had never heard this story before this telling. And I thought, right there, that is the difference between men and women. You get attacked by some damn vampire bats, and you forget to tell your boyfriend? I would have had to build my own phone in the wild to make sure I could tell that one right away. It's so bizarre, how else would you know it was real?


That's what I guess this blog has brought to me, selfishly. What a gift to be able to recognize your life and what it is and what it means, not later, not in hindsight, but while it's happening. What a gift to yourself and to anyone else who is a part of that story. But you can't do that if you are too wrapped up in yourself and the way things are supposed to be. That's why we have conversations like this in my house (and we always have, way before cancer) while we're watching movies on Netflix: OK Gabe, if there's ever a civil war and you haven't seen me in two years and the world has gone to hell and you see Natalie Portman living by herself in a godforsaken cabin, just sleep with her. You will probably both be dead within the week, and I wouldn't hold it against you anyway. Or, ok Gabe, if you could save the entire human race but the only thing you have to do is kiss a woman who isn't me, you had better kiss that woman or I will make sure to kill you myself. In fact if you could save just one person, or even stop one person from getting hit by a car, by kissing someone else, promise me you would do it, ok?

And this circuitous train of thought brings me back to the early days of my cancer diagnosis, when I told Gabe I had something to tell him, and he gave me a crestfallen look before he steeled himself to hear it. I hadn't really thought about asking "permission" to have an ex take half-naked pictures of me once I found out I had breast cancer, but he suggested I find out if Gabe cared. Instead of asking, I just told him. When Gabe heard this he sounded really relieved and said, oh, that's not what I was expecting you to say. I thought you were going to say you had slept with someone else or that you wanted to sleep with someone else.

And then I got pissed, because first of all, did he really think that was at the top of my mind in the middle of my terror and sadness and grief? Really, I was thinking about sex? And then I got even more angry, thinking about this supposed hall pass I seemed to be getting, since it didn't even seem like he would have been mad, just a little hurt, if I had cheated. Like I was Cancer Girl. I said, what, do I have one foot so deep in the grave that the normal rules don't apply, I don't even need to be a normal wife anymore? And he stumbled, trying to explain. No, that's not it, of course I want you to myself, I don't think of you as dying, I just think that it's your life, and you need to do what you need to do, whatever will help you deal with this.

I was still angry, and confused, by this reaction. I told a good friend about it and she said, huh. Can you imagine being in that place? Imagining a betrayal from the person you love most in the world and immediately seeing past it, forgiving it, because you just want that person to feel better and you don't know how to help her? Think of how much pain you must be in, how much love you must have, to feel like that.

And while I was marveling at the existence of my super-intelligent and thoughtful friends, I understood exactly what she was saying. In part she was saying, you need to flip it, Katy. You need to realize that the story you just told me isn't about you at all, it's about Gabe. And I would take it further and say that by saying what she said, the story was really about her. Or the story was about the man who took the photos, who asked if Gabe would think it was weird that we were in our bedroom with the door closed and I was taking off my clothes in front of someone who used to be my lover while my husband played downstairs with the kids? All I could say is no, since I didn't have the heart to say, he thinks it's weird that I have cancer, that he might be raising those kids by himself, and this is really just some meaningless small potatoes in comparison. I couldn't say that because it wasn't meaningless to him. He wasn't living with my cancer every day, he was living in that awkward moment.

So for one of many times in my life I learned how to see myself as someone else saw me. And like everything does, that brings me back to gender politics and gender identity. Under the guise of empowerment, we spend a lot of time telling girls not to care about what other people think, not to see themselves how other people see them. And yet, I feel that we are taking away one of girls' greatest strengths when we do that. My mom used to say "men think they're beautiful." That means that many men have a hyper-inflated view of themselves and their attractiveness, their appeal. But it means something else too--they don't get that we don't necessarily see them that way. They just don't see it because they have never been taught to care what we think. But women, on the other hand, think about this all the time. We receive so many thoughtless comments (thoughtless in the real sense--even if they are positive) about how we look, our sex appeal, that we learn to objectify ourselves, to sit outside of ourselves and look in. However, too often, we are too hard on ourselves, and we make up flaws that no one else can see. In my mind there is a happy medium. Why can't we encourage everyone to see themselves the way that other people ACTUALLY see them? To put themselves in the other's shoes, and look back inward?

But again, here I am playing at giving advice. I can't say I'm very good at what I have just described. I have had my moments though. I was able to do that when I lost my hair. I thought, realistically I believe, that people will see me bald and think, that's kind of strange looking. Or they will think, she has cancer. A few people might think it looks nice. A few people might appreciate it. But no matter what the reaction, most importantly, those people will think whatever they will and then never think about it again, because I am a stranger and they don't give a shit about me or my bald head, so why should I make such a big deal out of it myself? The knowledge that my "otherness" wasn't so interesting in this wide world made it easier, just like it made it easier to be in a wheelchair, or to have such pretty hair that people you have never seen before and will never see again reach out to grab it and ask if it is real. Those people were seeing one perspective of me, they weren't seeing ME.

To see that, you would need to read this blog, or tell a story about me, and you would need to see me in the flesh or talk to me. Because if you have both, you can appreciate all of the unseen possibilities, you can think about that stranger who did a double take and then smiled and winked at you, and you can wonder if he would go back to the office and tell a little story about the cute bald woman he saw on the street. The wink made it real, the story made it last. And then you're outside of yourself, without ever having to leave. That's what completes the picture right? That's it--the kiss, and the story. You need both.

Day 436: Fast Forward

When I was first diagnosed with breast cancer, the doctor who gave me the ultrasound order said that he knew that the only thing I wanted was to be able to fast forward one year, to see what life would be like "after cancer." He told me that in ten years, I would be the woman who received a phone call from a friend, saying she had breast cancer, and looking for advice. Well, I really hope the prediction about the friend isn't true, though I would like to be around in ten years to receive happier types of phone calls. The first sentiment is spot on, though, because I was desperate to know what it would be like when a year passed. But some anniversaries are wistful, some are fun, and some are just a little macabre.

A year ago today, I had my head shaved and my long, pretty, curly hair shipped to a place in Florida so that I could keep it--wear it, even.

That hair pretty much sat in a box once it arrived. So did my $800 worth of wigs. It seems like such a waste now, but the inability to fast forward our lives brings us those moments of terrified spending. I just couldn't imagine what it would be like to be bald, to live as a bald woman. I scoured the internet looking for pictures of bald women, searching for testimony to tell me how long it would take for my hair to grow back, and I found little that was of use. So here's my contribution to those women who are doing the same frenetic searches today. Here's what it looks like before, during, and after. Here's one example of post-chemo hair a year and three haircuts later. And I guess the message is, it could be better, and it could be worse. The message is that somewhere down the line, the hair became the least of the issues, it took a back seat to all of the other cancer-forced changes, though being told that doesn't help when you're at the beginning of it, waking up from dreams of your bald self in the middle of the night.

A year ago, I was eight days past the start of AC chemo. For the first five nights, I didn't sleep at all--no sleep, not even five minutes, for almost a week. I was this short of clinically insane, and there I was working, taking walks, trying to have conversations. I started out 117 pounds and got down to 110--my chemo nadir--and back to 113 by the time I shaved my head. I had to leave the house, or at least go upstairs, whenever my family ate dinner or else I would vomit. I lost the ability to sweat, the ability to cry. I walked out of chemo with 9 drugs in my body, including one that causes permanent heart damage in 3% of the people who take it, and my body tried its damndest to say, oh no you didn't. You aren't doing that shit to me again.

But I did. Three more times, and four more with a different poison. Then I burned myself for a while. I went through menopause, went through so many things.

And now it's now. I have a new job, a new house, a relatively presentable haircut, and I weigh 116 pounds. I get up at 5:15 every morning on purpose to go spinning or to take a long walk. If I had even thought about spinning a year ago, I would have collapsed from the mental imagery of trying to keep a chemo-ravaged body steady on a bike for 45 minutes. But it's not July 15, 2010 anymore. The calendar really did turn, though for a while there I didn't believe it would.

Shaving my head was so hard, so sad. I cried so completely, something I rarely do. But I came back to myself relatively fast; I just sobbed and sobbed and then...I stopped. And I only cried for my hair one more time, when Gabe had to bic it smooth once it started hurting, pulling on my scalp all the time, two weeks later. At that time I wasn't crying for the hair itself but for the absurdity of the situation, the backwardness of what we were doing. Isn't it the wife who is supposed to try to give the husband a haircut with the clippers, to save some money by avoiding the barber? After that bit of morbid bonding, Gabe told me I looked sexy. He thinks this bald picture of me taken on our anniversary weekend is sexy, in fact, though by that time my eyebrows and eyelashes had started to disappear. There are things you are supposed to say when you're married, I suppose, to keep the peace, and though most men don't have the bald-sexy line in the repertoire, Gabe used it a lot. Maybe I believed it, maybe I didn't, but hearing it was better than feeling unattractive and alien for half a year, so I can thank him for that.

I've been thinking about what I would have told myself if I could see into the future and see my hair and feel my body and live my life the way everything is now. I would probably be at a loss for words, though. I suppose the right thing to say would be, you will be just like your old self, though that is not a truthful thing to say. The truth is, you will feel like yourself the whole time, even in the middle of chemo, you will not ever feel like a different person than yourself. That is the frightening part of suffering, that it happens to us, and we are still us, and when it ends we don't need to roll back into ourselves because we never left. Suffering terrifies us because it doesn't always happen to other people, it happens to us, and we don't get to pretend to be someone else in the meantime.

At the same time, I look at these pictures and it's like looking at several different people. In the first one, I had already had two cancer surgeries, so it's not a pre-cancer shot, but I just look completely different to myself with all that hair. The second one, where I'm stripped to the bone, framed as some kind of basic version of myself that most women never see, with no hair, makeup, what have you, and that's another person. Then there's the tan, huge-eyed version of myself, with that postmodern iphone glance that is somewhere underneath the camera, somewhere south of the middle distance. Finally there's me, fresh from spinning, thinking about how it took a year for my sweat glands to reemerge, knowing that my muscles could not only hold my weight but accomplish something athletic to boot, holding my once-vibrant hair, which Lenny informed me is "dead stuff like fingernails."

Maybe that's it, maybe that's what I would have told myself as I gripped the sides of the salon chair and got ready to have my head shaved: in a year you will go into the basement and find a hat box, you will open it up and take out your hair, and your husband will take a picture. The picture will be of you looking into the camera, smiling above the dead matter that had been lying in a box for a year. And you will think, better it than me.

Day 395: One Year Cancer Free

In one of my very first blogs, I related the story of how I learned about the concept of the future when I was nine years old. I was wistfully watching other kids jump in the leaves, and I lamented that I couldn't do that. My mom told me I could jump in leaves next year, and the world of possibilities opened up for me as I realized how different life could be in the future.

I kind of feel that way today. One year ago today, I had three cancerous tumors removed from my breast. Though I had to go back less than three weeks later for a re-excision, we learned during that second operation that there were no cancer cells remaining; the surgeon just wanted about 1/4 cm more clearance away from what had been the tumor site. She took a big chunk to get that 1/4cm, but I wouldn't have cared if she just took a third of the whole breast at that point. So after we received that pathology, I realized that I had indeed been cancer free since June 4, as far as anyone knew.

It's hard to imagine life being more different than the difference between June 4, 2010, and today.

My lumpectomy blog gets a lot of hits. A lot of women must be searching for answers that their doctors don't provide, because every other day or so a stranger is sent to my blog by googling "lumpectomy blog." However, it is one of the few blogs that is just too hard for me to read. The fear, the pain, the sheer number of procedures, the dread of waking up and looking for the damn drain, not knowing if cancer had spread, not knowing my stage, being doped up on drugs, unable to walk into the house by myself, the knowledge that my cancer treatment had only just begun, and I was about to embark on chemo but I had no idea what to expect. I was still mourning my hair, still waking up in the middle of the night terrified. I cried all the time. If the future was there, it was hard for me to see, at least the part that didn't involve poisoning myself or suffering through treatment. I hope the blog helps the women who find it, but it pains me, so I avoid it. June 4, 2010 was just a harrowing disaster, starting at 5 am when I had to get up to get to the hospital.

And then this year, I slept in a little. I made chocolate chip pancakes for breakfast. Lenny and I went to get our hair cut--she is five years old and has never had a haircut in her life (this picture shows how long it was before the haircut; now it's the same, but three inches shorter). My hair was getting so curly and thick and out of control that I couldn't take it, so I had it cut super-short. I told the stylist that I used to dread getting my quarterly haircuts because I was afraid that she would cut too much, or it would be too short. Now I just don't care. Cut it, cut it! Why not? What do I have to lose? One of my neighbors, an older woman who had breast cancer years ago, remarked on my short hair several weeks ago and said she liked it. I said, I am getting used to it, but it seems so short. She shrugged. Well, you've had less.

And isn't that the truth. I've had a lot less, in general, and very recently. I've lost so many things, and gotten most of them back, and I find I don't miss the other things nearly as much as I expected. Life now is just much fuller, much more, than it was a year ago. After the haircut Lenny and I walked home. Augie and Gabe came home from toddler soccer and we all went to the pool. I put the kids down for their naps while Gabe went over to meet some contractors at the other house (thank God, it's definitely his turn), and I sat down to write this blog while munching on some grapes.

How far this seems from a year ago. I just can't let myself think about going back there, even though it's hard. I saw my ob/gyn the other day for my regular annual exam, and he was just beside himself. The last time he saw me was shortly after my diagnosis. For a while, he called to check up on me and always seemed concerned and surprised that I was so down, so scared, so sad. He tried to talk me out of that with the positive cheerleader speech. I don't begrudge him that. But except for the fact that I had long hair, I pretty much looked exactly the same a year ago. I weigh the same, my breasts are still pretty much the same size, obviously my face hasn't changed.

Like everyone else, he just doesn't see it. I wouldn't recognize you on the street, he exclaimed! You have never looked better! You must've lost 50 pounds! (Um, yes, since right before Augie was born--over 60, in fact. But again, a year ago, when you saw me, I weighed what I weigh now). He didn't believe me. I think he must have been so distraught last year that he didn't see me at all. He went on and on about how at peace I seem, how sophisticated, how stylish. He said he was so proud of me, and I should be an inspiration for other women, and all of this stuff. He hugged me and kissed my cheeks. He told me to live my life--as long as I didn't get pregnant. I wanted to laugh. Are you kidding me? That's the last thing I would allow to happen at this point.

I appreciated all of this, but what is there to say? How am I inspirational? Because I suffered, or went through some bullshit, or because I have a cute haircut? That's the part of cancer (or epilepsy, or anything) that doesn't make sense to me. How could I help a woman who has late stage cancer, what do I have to offer someone who isn't going to go through this in the same way that I did? It's hard to imagine. I also don't think it's impressive to survive an illness, especially one that can come back and kill you later, no matter what you do. There is no statement here, if that makes sense. My hair isn't short because I'm a new person, a woman reborn. It's short because I am the same--impatient and clueless when it comes to doing hair. I can't deal with it when it's a little longer, so I chop it to avoid dealing with it at all.

This seems true for any of the things that people compliment me about these days. People talk about all the stuff we've got going on, all the drama with the houses and work and kids and everything. But when was I different from this, when did I ever really sit down? What does that have to do with cancer? The only thing I can see is that I feel less insecure these days, due to the massive physical changes I endured over a year and how I just decided not to let them bother me too much in the end. Today, I wore a bikini today for the first time in probably 15 years. I worried about whether I could pull it off for about 30 seconds. Between that and the short hair, I could barely recognize myself. But then I thought, well shit, last year I was walking around bald, until my chicken little hair started to grow in but at that point I had no eyebrows or eyelashes. I put pictures of my marked-up, burned chest on the internet. It's hard to hold on to too much vanity or insecurity after that. Besides, last year I didn't get to go swimming at all--I missed out on the entire summer. I don't remember if I even put a bathing suit on, and all I really remember about sunscreen from last summer was slathering it on my bald head. I felt like a kid going to the pool today, almost as excited, kind of ridiculous.

And at the end of the day, I have to admit that I've had some practice with this stuff before, I guess. I've had a lot of things happen that became a part of me but not the whole of me. I've been noticed for a lot of the wrong reasons. I was the kid in a wheelchair, the one who had convulsions on the classroom floor. I was the 8 year old with red hair so curly all the kids made fun of me and called me Annie and the old ladies stopped their Oldsmobiles in the middle of the street to tell me how gorgeous it was. I was the kid who had night terrors until I admitted I was afraid to die. I am still paranoid about cars, and driving. I made a decision to never drink very much when I learned how anti-convulsants had destroyed my liver (didn't help me avoid breast cancer, unfortunately).

And then with all of those things, life just continued, and it was different from before, but I felt the same. I still feel like I did when I was 6, or 9. I feel closer to those little girls than I do to the woman I was last year. I feel cranky, and I geek out over stupid things, and I still love fruit and chocolate above all other foods, and I consciously think about the breaths that come in and out of my body all the time, and it feels miraculous, in a small and strange way.

I feel cancer free now. I didn't feel that way for a long time, even after it was true. And for all I know, it's not true right now. Some bad cells could be lurking somewhere in my spine, in my lungs. I don't think so, but I don't know. Right now, today, I don't care. I might look like someone else, but I feel like me.

So here's to a June I will get to remember for its normalcy, here's to a summer I won't miss. If there were leaves to kick, I would, but there aren't, so I guess I'll go swimming, row a boat, learn to ride a bike, go on vacation, eat an ice cream cone. I do not plan to live this summer as if last summer didn't happen, but rather like it did, so I will do all the things that were so far in the future just one year ago. And why not? I'm 35 years old, and I get to start the clock over. Kind of neat, really, not worth what I had to do to get here, but neat all the same.

Day 389: For My Son on His Second Birthday

As a parent, it's hard to be fair. You do your best to treat your kids the same, not to compare too much, and in the end I think it's inevitable that you fail. I am sitting here full of the knowledge that I need to write a letter for Augie for his second birthday, as I did for Lenny a few months ago for her fifth. And yet I really don't know what to say.

So until I can figure it out I'll stall a bit. There are a bunch of things I've been thinking about covering in the blog, but I've been too busy doing those things and living my busy life to find the time. To start, I haven't written at all about my two experiences rowing on the river. The first water practice (we go on the water on Mondays, which is the only day I could ever practice, so that works out for me) the six novices who had never rowed before just watched from the dock. We practiced getting in and out of the boat, which really is just as wide as a pretty small person's body. None of this is intuitive and it is nothing at all like the erg, leading me to believe that the two things might as well be unrelated.

But let me back up a bit. In order to get to practice, I had to find the right spot on the river, which is kind of in the middle of nowhere. It's in Bridgeport, that famous working class south side neighborhood home to the Daley family. You can't actually see the river from the street where you park your car. Instead, you see some chain link fences surrounding a bunch of gravel and weeds. You walk a little farther, and there are a bunch of boats--lots and lots of boats--stored in the middle of the rubble, next to some storage lockers. This area of the city is very industrial, and the river is anything but scenic. In fact, Chicago is the last major city in the country that doesn't treat the sewage out of the river. So over 70% of the water is literally toxic--a toxic waste dump we try to pass off as a tourist destination, Chicago-style. That first practice when we watched the others row, I decided it would be best not to count the condoms, tampons, beer bottles, and other random trash floating past. God help anyone who fell in that water.

The next week, we novices got our chance to row. We all successfully got our oars in, got in the boat, and walked the boat off the dock. There are a bunch of kids from a local Catholic prep school who volunteer for the team, and several of them were rowing with us in our boat. And let me tell you, it was HARD. I felt like a failure for a while, and then I realized that I could do it. If I could watch the kid in front of me and ignore my oar, I could do it. The hardest part is to try not to think about what you're doing. Maybe that's the key to the rest of life too. Just don't think about it too much. Anyway, there we were, rowing down the river while the sun was setting. The river is so narrow on the south branch, and we had run-ins with fishermen in Chinatown, yelling at us when our oars hit their lines because there was nowhere else to go. We had some groupies. I almost lost a shoe off the dock in the lethal water. I missed the following week due to house issues, and then last week I went in for the second time.

They put me in the bow seat, and I had extra responsibility for steering the boat on multiple occasions --leading us to get caught in some trees in a particularly narrow part of the river. I could have felt bad, but I figured I was a woman who had just finished breast cancer treatment six months ago, who had only rowed twice in her life, so I couldn't take too much blame. They had us novices rowing for well over two hours, for forty five minutes longer than everyone else. I had calluses on my hands and everything in my body hurt. During one drill, they had us using our inside arm only to learn how to feather the oar. Doing that just killed my breast, and my chest muscle. (My surgeon told me that radiation weakens your pecs, and that I can expect to have chronic pain in my surgery site forever--that's right, forever). Maybe I'm just that much closer to radiation and surgery than everyone else, and maybe I have too much scar tissue. But man, did it hurt. I was going to say something to the "coach" (the launch following us was led by a kid who just graduated high school, who will be going to Dartmouth in the fall), and then I realized that I couldn't. For a teenage boy, he handles the whole breast cancer thing remarkably well. I have often wondered if he has some personal connection to breast cancer. But I just couldn't say, hey, you might want to avoid that drill for women who aren't far removed from cancer, because damn, my boob really hurts. He had trouble when another coach told us to hold our oar at our bra line, so how could I go there? I know that teenage boys are essentially embarrassed just to be alive, and this kid really does pretty well, considering, so I decided to let it go for the time being.

But hey, here I am, 35 years old, clueless about boats and prep schools and team sports and all the other things related to rowing crew, and I could do it--now I can say I've done it, regardless of how long I can keep it up. The city looks just beautiful if you're a nerdy urban planner type like me and you like reading colorful graffiti and wondering how the taggers get to those places, what the were balancing on, where they came from, and you smell the bread from the factory and realize how hungry you are right after you realize how rare it is to smell something good that is actually being produced in your hometown, and you think about the Chinese immigrant children who hang out after school crouched down over the river and wave to some boats full of women who are in various degrees of cancer survivorship, and some teenagers who probably have much better things to do tell you that you look awesome, and you're so bone tired after you drive home in your one working car to the smaller of the two houses you're crazy enough to own, and your husband is putting your daughter to bed, and you collapse on the couch and think that Chicago is a pretty interesting place after all.

There might be something else I wanted to say before my letter to Augie, but that was long enough, so I'll stop there. Assuming I pass my swimming test this week (I have no memory of how to breathe correctly underwater, though you'd have to be clinically insane to put your face in the Chicago river, so sidestroke or backstroke is more logical anyway) I will keep it up for as long as it makes sense. Until then...

Dear Augie:

Three years ago, we were fairly certain that you would never be born. While we had no trouble conceiving your sister, by the time she was 20 months old and I was ready to think about going through labor again, both your dad and I had fertility issues. While a relatively simple surgery fixed his, it wasn't clear what was going on with me. Perhaps now we know, as hormones must have wrecked havoc on me in conjunction with contracting cancer, but we couldn't know that at the time. After learning that your dad was back to normal, I immediately called my doctor to ask to put me on Clomid, since I knew I hadn't ovulated since Lenny was born. I took those five pills, went in for an ultrasound, and saw the egg that would eventually become you. We were given instructions that day on how often and when to have sex that weekend, and I decided to throw in that night for good measure. Your dad didn't object, and we were later told that against all odds, on that first try, you were conceived.

I can only imagine how embarrassed you will be to read that when you are a teenager. I hope I am around to see it. The point is, though, that I saw you before you were you. I saw that picture of an egg, the doctor told me it looked like a good one, why not give it a shot? And unbeknownst to me, I was looking at you, or the beginnings of you. Two weeks later, I took the pregnancy test as soon as it made sense, and I saw that faint line. We had tried to conceive for almost a year, so I just assumed it was a mistake. I waited a few days, took another one. The line was faint, but not as faint as before, so I went in for a blood test. When the results came in,my doctor was off for Yom Kippur and I talked to the one Catholic doctor out of the twelve in the practice, since most everyone else was out as well. What am I looking at? She asked me. I said, well, I need to know if I'm pregnant. Oh, well you're definitely pregnant, but you're not very far along. What do you need to know?

I'm pregnant? Me? I asked. I sat there in a stupor in my office, wondering how it was possible. And everything about the beginning of your life was like that. I thought you had died early on when I had horrific cramping and all of my early pregnancy symptoms disappeared overnight. It turned out to be nothing but my uterus contracting and pregnancy with you was relatively easy. Then I had bleeding at 26 weeks and had to go to the ER in the middle of the night, while our sick neighbor from next door came over to sleep on our couch so Lenny would never know we had left. That was just a burst blood vessel. I thought you would be a preemie, so I stopped exercising at 36 weeks when I was told you would be born within a week. At 37 weeks, progress had halted, and I went to water aerobics after taking a long walk. My water broke in a torrential flood at 5:30 the next morning, so much fluid it was laughable and could literally have filled our bathtub, and you were born at 2:18 that afternoon. I pushed your sister for two and a half hours, and I pushed you for 13 minutes. She fought to be born healthy, you just fought to be born. You cried right away, nursed right away, and you were completely, utterly perfect. I thought I could do that again, it was so easy.

But aye, there's the rub. I couldn't know then that I could never do it again, that you were my second and last child. Your father and I thought we would be done with two--he had to be convinced to have you after it was such a struggle, and then he wanted another girl. I figured I would be too old to have any more children, after having you at age 33. I just had no idea what was in store for us. With the thought that you were my last baby, I took a six month leave from work, and had a wonderful summer and fall with my adorable son. The summer was just beautiful, like a California summer, and we went walking together every day. I lost thirty pounds in a month and just kept getting smaller as your boy hormones kicked my metabolism into overdrive. I worried about you as your torticollis refused to go away. I took you to physical therapy every week starting when you were three months old, and watched as young nurses and therapists played with you and cooed at you and wondered how they were doing anything that I couldn't. I nursed you every few hours, and marveled at how easy it was. Even when you weren't good at something, like lying on your tummy, it seemed like it was because you knew you would get to it eventually, that you thought this stage was good enough for now. That is how we began to believe that you had been here before.

You laughed in your sleep when you were three weeks old, a full laugh with your whole belly. You scowled before it should have been possible. At five months old you started kicking all the time you were nursing, laughing, talking to yourself, demanding to be moved from side to side every minute. You never got to move past that phase. Other things happened, your parents went through some tough times, your sister turned four. We couldn't wait for your first birthday.

And then, just like that, your life turned upside down before it had even begun. Less than a month before your first birthday, your mother was diagnosed with a rare and aggressive form of breast cancer. Within six days, you were weaned. If your eyes hadn't seemed like those of an old soul before, they quickly took on that tenor, as you looked at me in the mornings with confusion, as I walked past your bedroom in the mornings crying while your dad fed you a bottle.

I wish I could say that I protected you from cancer, but you were so little that I didn't know how. I made sure to never cry around your sister, but I thought you were too little to notice, so sometimes I just held you and wept. How could I know that you would get angry, refuse to start talking, never let anyone else put you to bed, start to call your pacifier your mama when you did decide to say some words? How I wish I knew what could have been different for you if things had been, well, different.

How I worried that you would never know me, that you would never remember me and I would be a story that someone else told you someday. I still think about that, and I wonder if I will be the mother you remember, or if someone else will take that role. Your father will tell me to never put voice to that idea and he will be angry with me for saying this, but I like to think that you will have a mother, and of course I want that mother to be me. If that isn't in the cards, I want to say on the record that I just don't want you to grow up without that influence.

Mothers can teach sons things, it seems to me. We can teach you to calm down, to clean up after yourselves, to not trust in this idea that boys will just be boys and therefore get away with things that girls cannot. We can teach you what women are really like, even when, or especially when, we are not like what many people expect women to be. But I cannot teach you how to be a different Augie. I cannot teach you to be still, or quiet, to be unhappy. I cannot figure out how you know how to use every piece of technology in our house, why you look through a cooler of juice boxes and pull out a beer, or why you love all animals to such distraction.

I can't even take credit for looking like you. Everyone tells you how much you look like your dad. Until last summer, I at least looked like you in the sense that we were both redheads. No matter how vain you might find this statement, it actually grieves me to not have that in common with you and your sister anymore. I know my hair is dark auburn, but I need to face the fact that I am really not a redhead anymore, not like before. Thirty five years of "redhead" being a huge part of my identity, thirty years of pretty hair getting me a lot of things that I wanted and a lot of other things that I didn't, and chemo has, apparently taken that from me. Lenny will remember being with her mother when strangers stopped us in the streets to comment on our beautiful hair. No one will ever call out my hair as pretty now, and I look just like so many other moms in their thirties--nothing special there, nothing distinctive. But not so for you. Now, when we are out as a family, people ask where you kids get your red hair, and while Lenny looks so sad as she glances sideways at me while I wince, you just laugh and say "hair!." Your dad says we picked it up at the park. I want to say that it was the mailman. The real answer is so much worse. I want to say, I'm a redhead, like my son! He got that wild crazy curly red hair from me!

But who would believe that? While it saddens me, it makes me glad for you. You get to look like yourself, like your sister. You don't have to be so conspicuously associated with your mother. You can look like your dad and be handsome in that unassuming way. And you can remind me that there is something in me that you will always recognize, perhaps even if I am not here. You have given me that gift, among many others. You see pictures of me bald, and you say mommy. Pictures of me with long red hair, short dark hair, and it's still mommy. You see pictures of me as a teenager, as a child even, and you recognize me, when I can't even recognize myself when I look in the mirror every day. You see me, when I find it hard to see myself.

You are so much yourself that you remind me that being yourself is not a choice. It is the only option. If you are devious, and fearless, and empathetic and stubborn and happy and a little bit crazy, you probably always will be that way. The same is true for me, and perhaps I am a little bit of some of those things. Regardless of who we are, you will have spent almost all of your life with a mother who had cancer, you will on some level remember being torn away from me, and I hope that you will forgive me. I tried like hell to have you, and then you were here, and if you hadn't been here before, it at least seemed like you were here as long as I could remember. I will always regret that many of the biggest things of your life, like learning to walk, are but vague memories for me in my surgery and chemo-clouded brain. But they are memories all the same, and that is what I hope to have with you--memories upon memories. You are, after all, my last baby, my only son.

Two years have come and gone, and you will remember next to nothing that happened in this formative time in your life. You are reliant on witnesses, on stories. Let this letter, and this blog, be a part of that story for you. If you cannot remember, or if I am not around to tell you, you will know that you were wanted and loved, that you made us tired and you made us laugh. On some days you even made us remember ourselves in spite of ourselves.

Happy birthday, Augie. I love you.

Love, Mom