Tuesday, May 29, 2012

Day 755: In Praise of Three Year Old Boys

Today my son is three years old. I didn’t know if I would see him get to this age back a few weeks before his first birthday, when I was diagnosed with triple negative breast cancer. I’ll always be glad that we celebrated his birthday as normally as we could, and I’ll also always be glad that he won’t remember how emotionally wrecked I was at the time. I wrapped the presents, baked the cake, took pictures as he smashed it all over his face, cleaned him up when he vomited the cake out a few hours later. His first birthday was pretty routine, except for all that death lurking in the background.

But times have changed, our lives have changed, and boy, has he changed.

This year, he gets to have his first birthday party with friends. He’s a little ringleader, a child with way too much charisma for his own good, so I capped the party at 6 kids to make my life easier. I try not to think about the parties he’ll throw for himself when he’s older, like, in three years.

I really don’t know what to say about Augie. Everything that I can think of comes out in short phrases, small ideas really. I feel like I am yelling at him most of the time, trying to stop him from hurting himself or other people, trying to control that crazy little person and losing the battle. Sometimes, I get to talk to him normally, and I realize how much else is going on in that little brain besides deviousness and mayhem. I’m just not sure I usually get the chance to say it. So I’ll use this medium for that purpose, and say a few things to my son.

Augie, I want you to know that there was a time when I thought you would never speak, back when you were one and a half and I was in the middle of chemo. My guilt brought me to the point of near obsession on this point, and I had you evaluated by Easter Seals. You were a little slow on speech development, but on everything else you excelled—especially all of the social development milestones. In fact, I don’t think the counselors wanted to leave because you were so damn cute that they just wanted to play with you all day. I should have realized then that you already knew exactly how to wrap everyone around your finger. I also should have known that you were apparently saving up all your talking for the talking back you were about to start doing. And yet, it’s really hard to stay mad at you, even though you deserve for me to stay mad at you. How can you be mad at someone who is always, ALWAYS, singing? How long can you stay mad at a kid who has so much empathy, so much exuberance, so much joy? And how, I ask you, are we going to keep you safe and alive until you’re old enough to know better? Will you ever be old enough to know better?

You try me, kid. But I love you anyway. I need to document your preschool age nuttiness, lest you run us so ragged when you’re a teenager that we forget that we already knew what was coming. So, for the record, I have no idea how you learned to do the following, all before age three:

1. attempt to sneak out of the park with a bunch of girls a few years older than you, then, upon getting caught, shield them all with your arms and declare: “Look mommy, we weren’t doing nothing.”

2. Kiss me good night by grabbing the back of my head with one hand, my face with the other, and swooping in

3. Use your basic math skills to surmise that it will be 19 years until you can have a beer

4. Discipline yourself, by declaring that you will soon be going to the corner or to your room, because, clearly, you cannot avoid whatever misbehavior you are about to inflict on us

5. Convince teenage girls that you are “scared” of things so that they will let you sit on their laps

6. Put your hands up in the air and begin dancing and singing “All the single ladies” at the top of your lungs in the grocery store

7. invent games such as “crash,” that involve you sparring, running, and then crashing into your dad over and over again until you are just short of a head injury

8. retaliate against people for any minor infraction or moment of not getting your way through the use of homemade weapons, including shoes, toy cars, the garden hose, a jump rope, Kleenex boxes, and fruit

9. refuse to listen to almost anything we tell you to do, but follow your sister’s authoritarian rule like a good little soldier

10. attempt, unsuccessfully, to play your dad and I off of one another, lie about what the other parent said RIGHT IN FRONT OF US, and then grab one of us by the chin, turning the face towards you and asking again very emphatically for what you were just told you couldn’t have

11. make up long, complicated stories while looking through books, because you are jealous that your sister can read and you can’t

12. surprise me at every turn, asking if you can bring a rock to keep you busy when we go out, looking around during the annual breast cancer walk and declaring “gosh mom, there are lots of girls here,” or running into the room when you had just turned two, arms waving, shouting "GUYS! You won't believe this!"

13. play the piano as if you actually know how to play the piano, softly and carefully, pretending to read sheet music

14. observe keenly the differences in things, be it the number of doors on a car, meaning a coupe is meant for only 2 people – “that’s cool!”, or that freight trains don't run on the El tracks, or that families with dogs and cats have “both kinds of people”

15. have a sense of humor rich in physical comedy, but also understand the nuance of timing

16. love all animals so completely, when we have never had any pets

17. get so used to hearing your first and middle names (Augustine Jacob!!!) called out to you in exasperation that you have taken to calling me “Mommastine Jacob” as a joke

18. force me to learn to use phrases I never thought I’d utter once in regular rotation: “no more choke holds!” “do not sit on your sister’s head!” “where are your pants?” “where are your UNDERPANTS?” “that doesn’t belong anywhere near this house much less IN YOUR MOUTH!”

19. become serious and introspective in an instant, and say something profound that leaves us in shock and wondering who you really are

20. ingrain yourself in everyone’s brain. College kids who used to babysit for you visit you on breaks. Everyone asks about you. You make friends everywhere you go. Teenagers and senior citizens alike seem to think you’re fun for a party. A month or so ago, I was talking to a friend about some of your crazy antics. She has known you since you were born, back when you refused to open your eyes for two months and all you did was nurse and sleep. She adores you, as most people do. She told me that we were in for some real trouble starting in about ten years. And then she said, you know, it’s going to be so much fun, watching him grow up, seeing what he does, how he turns out.

And that’s the truth. I plan to be there to see it for myself. If fate doesn’t allow that, well, you have definitely made sure I wouldn’t be bored in this life. And even though I don’t really believe in this kind of thing, a part of me does believe that you’ve been here before, and apparently you learned a few things about how to have a good time your last time around. Thank you for reminding me.

Happy birthday, kiddo. I love you.

Sunday, May 27, 2012

Day 753: Legacy World

Sometimes you read something that seems that it was written for you, that gets right to a kernel of truth that you have always known about yourself but hadn’t the time or the eloquence to write. I read such a piece the other day; it was a speech posted by a friend on facebook. The speech was given for the Baccalaureate service for those graduating from Harvard University in 2012. It's entitled “The updraft of inexplicable luck.” It contains everything in it that I believe about the nature of privilege, the fallacy of meritocracy, and the purpose of higher education. It even ends with a baseball metaphor.

I’m neither religious nor of the Ivy Leagues. Part of what I will say today will make it clear that in some ways, I could never be either of those things. But if there is anything that I think of when I think of my life, it is this: I think of the nature, the mystery, the miracle really, of luck.

We are such a nation of optimists that we assume that “luck,” by its very definition, is good, if we choose to believe in it at all. Many of us shun the idea of luck, believing that we control our destinies, and that within that control, lies power. Others see luck everywhere, in every aspect of life. Luck can be good or bad. You have to be willing to do something with your luck, something positive with the good, or more importantly, something positive with the bad. But the biggest mistake we can make is in thinking that it isn’t there.

I could look back on various things that have happened and wonder about my bad luck. Sometimes I do that. My body has taken more beatings than it deserves. I have faced death too many times. But that is not the theme that I return to over and over again in this blog, in my daydreams, in my stories. I come back to what I called in a previous post “the penultimate level of suffering.” The suffering I’ve endured that stopped short of the next wave, that those more unlucky than I had to face. The almost-paralysis. The threat of brain damage. The cancer that hasn’t yet returned, as far as I know. The heart damage that was only temporary. The assaults I evaded. The fact of my sitting here.

I have been told time and again that I am a fighter, that I am scrappy, that I am stubborn. The implication is that these personality traits explain how I escaped worse fates. But with such pronouncements, I am left to wonder what personality traits led to those things happening in the first place. And I reject that idea, and I go back to luck. Or life, or shit happens, or whatever you’d like to call it. If I do not deserve the bad things that have happened, I contend that I also do not deserve the good things. None of us does, not really.

It’s true that you have to have the good stuff, as this speech contends. Sandy Koufax was right about that. But it is also true that there are forces throughout your life that you cannot control that enable you to have that good stuff in the first place. Because without someone supporting your stuff, you are likely to just let it go. When I hear young people talk about what they want out of life, their goals and dreams, I find myself wanting to give some kind of advice that I am in no place to give. I want to tell them to not want grand things, because it is through the expectation of greatness that entitlement rears its ugly head, it is by focusing on your own specialness that you overlook how special it is to have any choices at all. Expecting great things can make you ignore the greatness of ordinary things.

But I cannot say that, I cannot give that advice, without people thinking that I believe in selling yourself short. That's not it at all, but I acknowledge that my way of seeing things is not necessarily the right way. It's just my perspective on youth, for better or worse. For example, I did not choose a college based on what was “a good fit” for me. I really didn’t think I would go to college at all, not until I showed up and moved in. In “choosing,” I followed the money, the scholarship, the generosity of a faceless CEO who bankrolled almost my entire education at Macalester College in the mid to late nineties. I graduated with little to any idea of what I wanted to do with my life, outside of an itching desire to work in the field of social justice in some fashion.

But mostly, I wanted to graduate. I had a purely singular focus, to graduate from college at age 21 never having been married or pregnant. It is that focus that kept me living 400 miles away from my boyfriend for four years, that helped me shape the ice queen reputation I had solidly built for myself by the end of my sophomore year, that enabled me to ignore those who thought I was crazy when I volunteered for 8 am shifts at work on the weekend, that kept me mostly sober. Maybe that was the wrong way to go through college, but it was the only way I knew how. I double-majored not out of some desire to overachieve but because I knew those four years of my life would be the last, really the only, that I would get to spend just reading and thinking about interesting things, and I couldn’t decide what to read or think about more, so I decided not to choose.

Macalester was such a little liberal bastion of thought, something that should have been so perfect for me, and yet, I still didn’t fit in. I did so well in college, and yet…I don’t know that I belonged there. I found my people, my wonderful college tribe, and there are those I am still close with today. But truthfully, I would have found my people anywhere. Perhaps I could have saved myself $12,000 worth of student loans (that is nothing by today’s standards!) and gone to the University of Illinois-Champaign, an excellent choice, instead. With the scholarship they offered me, I could have gone there for $900 a year.

But I just wanted to prove to myself that I could do it, that I could move to another state and be on my own and thrive, and then I did it, and the world opened up to me as the freedom to have a low-paying job, the decision to take a second job so that I could live alone for seven years, the joy of being responsible for myself, became the next phase of my goal. My goals were always positioned in the negative: not getting pregnant, not being unemployed, not being in a dysfunctional relationship, not selling out. Some call this the curse of low expectations, of seeing the glass as half empty. I disagree.

The glass might be half full, after all, but full of what? And who gets to drink it? Who owns the glass? If you believe in luck, you believe that the glass is both half full and half empty, and you recognize that if you are in the full half, you had better appreciate it, because the time for emptiness will soon be upon you. If you acknowledge luck, you can acknowledge that half is good enough, because most people get nothing. Most people don’t have glasses of their own, nor clean water to drink.

Gabe always says that he thinks that we are never going to make it big, or get high-powered jobs, because to us, what we have is good enough, and it isn’t clear in our minds how we would do better, or why we should. He is like me, someone who doesn’t know how to ask for a raise, or barter for a better deal. He is the person who rolls his eyes when people say “oh you went to Northwestern? What a great school!” He’s the kind of person I was destined to marry, so that we could watch football and make love when we should be doing something more productive.

After all, I work in a place that values PhDs from Ivy League schools, and I am just none of that. And my motivations for my strange career path are, indeed, kind of strange. I will always remember the stumbling speech I gave as I left my last job at a nonprofit think tank, where I somehow rose to the position of director of research, as my boss there once said “by sheer force of will.” I valued my time at that job very much, and learned a great deal. When I left, I had but one thing I wanted my colleagues to know about me. I said that I did not enter the field of social justice because I wanted to help people. I entered that field because I had been one of the people we set forth to help. I did not do it out of selflessness, but rather selfishness. I did it because I wanted to believe that when (not if) the shit hit the fan for me once again, systems and structures would be in place that would make it so it wouldn’t be so hard for me and my family. I said that that was what we should be striving for in the world of economic development. I will never forget the looks on their faces, as they understood something about me they had never realized.

They got a glimpse into my motivations, into my mind as I remembered my mom steeling herself when we would arrive at our three room apartment and see a letter from the bank, telling her she had overdrafted the account and charging her $35 she didn’t have. I also remember thinking that we were not in that position because we deserved it. I remember learning to talk about money, because people without money are not ashamed of the subject in the way that people with money are, as they try to believe that their comfort is borne of merit. I also remember thinking we were lucky, being in the position we were in. We had an apartment in a nice neighborhood. We had jobs. We had banks, and mail.

I think of this, and am reminded of a conversation I overheard among three teenage girls on the train recently. One was saying to the others that she didn’t want to get a job. She went on to say that her parents understood that they would be “sponsoring” her once she was 18, until she finished graduate school, that she refused to work during that time, because it was their job to support her. I sat there with my mouth literally agape. One of the girls nodded her head. The other said, well, I don’t know, I can’t imagine what it would be like not to work. I would be bored. My mom drove herself to Arizona when she was 17 and got a job and put herself through college, and she was the first person in her family to do that. So, in my family, we always work. The first girl just shrugged. I wanted to hug the girl talking about her mom. She understood the arc of her life not just from the context of her own experiences, but from the place her future held within the lives of others. She got the context, and she challenged her friend. She paid homage to the legacy of her mother, someone who had clearly gotten her message across.

As my mother did for me. But she was not the only one. If it is true that there is more than one way to live your life, you have to be lucky enough to have choices in the first place. And no one gets there alone. I have been chosen, at some point in my life, and I am in debt for that. People talk about teachers or coaches who influenced them or saw something in them that put them on the right path. I have had many positive influences, but one stands out—my dean in high school. This woman put the fear of God in students. Gang members were afraid of her. She had a high-paying position in a good school district and lived in a luxury apartment complex and wore perfectly put together outfits. I admired her when other people hated her. And I realize now that I am in debt to her, because of the things she did for me, when I was fighting a battle with myself and my circumstances and on the cliff’s edge of losing.

I was a very smart kid and a good student. I wasn’t a troublemaker. My first two years of high school, the worst thing I did was sneak off with my boyfriend in 9th grade after a field trip to make out in the hallway. Even when we got caught by the security guard, I felt only vaguely embarrassed that he had seen that boy’s hand up my shirt; I wasn’t worried that anything bad would happen to me. My junior year, things were difficult at home, and I had had some experiences the previous year and over the summer that made me suspicious and jaded. I was still a model kid in some ways, serving as vice president of my class, president of SADD, editing the literary magazine, earning A’s in honors classes. But there was some other stuff going on at the same time.

I began ditching class whenever Mr. S. would substitute, because I knew he had a thing for me based on things he told my boyfriend and my ex-boyfriend. I got caught, and the Dean demanded to know how I could have so many absences in one class and not the others. I challenged her with my youthful defiance, saying, when M. S. subs, I leave. I did not tell her why. She glared at me and I thought I was done for, headed for suspension.

She did nothing. This is the woman who also glared at me when I told her I refused to go to the driver’s ed class taught by the guy who gave extra credit for wearing short skirts. I didn’t say this to the Dean, but I guess my message came through, because she put me in the other teacher’s class. Then, she got me a job at her luxury apartment complex when I was 16. My job was to look cute, deliver packages to wealthy men, and do some secretarial work. My job interview was a joke, as it was understood that if the Dean chose me, I deserved the job. She literally hand-picked me, as she had done for the girl before me. The Dean knew I needed the money, knew I would show up and be responsible, but still, hundreds of girls at our school could have used that job. It wasn’t hard, I could walk there from school, and it actually helped me when I went into the housing industry years later. I did so many things there; I learned how to plan events, I made deliveries, I answered phones and did paperwork and flirted when it was required.

I learned how to work. I had always worked, always found jobs here and there, babysat, did what was necessary. I had already started buying my own clothes and helping out with finances at home. But that job taught me what work was all about.

My Dean chose me, but why? When I started ditching all the time my senior year, why didn’t she punish me? She called me in and yelled at me, seemed absolutely beside herself with disappointment. I didn’t even try t o make an excuse for my absences from English class; in fact, I defied her again, telling her I was getting perfect grades in that class, so what was the problem? She looked at me and said My God Katy. Will you just graduate from high school? You are almost done, you are almost out of here. Just get out of here!

That was my fear, of course, that I would never get out of there. Not high school, but out of my life, my circumstances. I thought there was no way out, college scholarship be damned. I was 17, and needed someone to kick me in the ass and help me out, and she did it, in spite of me and everything I did. I tested her again when I brought in an ivory colored dress that I had bought for $35 at a thrift store to wear to graduation. Our gowns had to be white—no exceptions. I told her, this is the dress I’m wearing, and I waited for her response. Perhaps I thought she would stop me from graduating and the life I expected could just start right then. Instead, she looked at me, sighed, and signed a note giving me permission to wear it. She knew I didn’t have money to buy a fancy dress. But surely she also knew that I could have tried harder to find a secondhand dress in the right color.

She picked me, she chose me to save, out of all the kids she could have chosen, and my God there must have been so many who could have used saving. One of my childhood friends, a boy whom I dated in junior high, was chosen in another way. Our Dean punished him all the time. He deserved it, some would say—he was a goof-off, he took nothing seriously. He was suspended, put into detention over and over again. He was a boy I both liked and was annoyed by—he lied to his cousins and told them he had kissed me in eighth grade. He playfully punched me in the head every time he saw me. He called me Katy Cadillac.

He is now serving a 65 year prison sentence for the part he played in a murder/robbery gone wrong when we were 19.

Why did she choose me in one way and him in another? Did she see something in me that she saw in herself, some defiance, some strong will, some instinct for self preservation? Perhaps. Those glares that seemed so menacing at the time can be interpreted differently through the wisdom of age. Those looks said, I know you. I know what you are doing and I am not going to let you do it.

But she could have, and maybe things would have turned out quite differently for me if she hadn’t. I should find her and thank her for what she did for me, not just for the opportunities she gave me and the punishments she didn’t inflict, but for the example she gave of how to defy expectations. She chose me, yes. But she also chose herself. She was an African-American single mother of a son. Things could have been much different for her. She earned good money, was stern and quiet and glamorous, nothing to trifle with, and she chose me.

I had good stuff. But more importantly, I had luck, and people looking out for me. I was not, as my mother constantly reminded me throughout my childhood, a Jew in Nazi Germany. I eventually convinced my mother that that example was not always the appropriate one. Of course, in a way, it always was. Because there is no explanation for why we are able to enjoy our lives, while other people must suffer through theirs. And there is no reason that we should not be the ones suffering while others are happy.

Gabe said to me last night, "Kate, you really should have been knocked up as a teenager. And I should have been in jail." Of course, getting knocked up wouldn’t have been so bad; I would have been fine, and there are big advantages to having kids early. Anyway, I said no, Gabe, not jail—you shouldn’t be here at all. When we visited the commune Gabe lived in as a baby, I heard something from the woman who had spent 35 years wondering about him that will stick with me for the rest of my life. She told him what a beautiful family he had, and she pulled me aside. I expected to hear her say how pleased she was to see what Gabe was doing with his life and to say that it seemed I made him happy, or something to that effect. Instead she said:

“I can’t tell you how happy I am that Gabe grew up.”

And that’s it—therein lies the nature of luck. Some people make it out of unfortunate circumstances, but many do not. A past lover once called me “Molly Brown,” and claimed that I was unsinkable. That was before cancer, but enough things had already transpired to make the analogy stick. I have always thought that perhaps I wasn’t meant to grow up, or at this point, to grow old. So far, my luck has not run out. But it’s there all the same, lurking in the shadows or shining on the water’s edge, reminding me that I could have been someone else, somewhere else, in a different place with a different outcome, but for now, I am not. It is inexplicable, and all I can do is spend some portion of my life trying to explain that I understand that. And so, I do this. I write my thanks.

Monday, May 21, 2012

Day 747: What's In a Word? The "Skinny" on Breast Cancer

Recently, I saw that someone had commented on my blog about reaching the critical 2 year cancer-free mark, “that was really good. Why does she keep talking about being skinny?”

It’s a valid question. So I thought I’d explain.

Cancer is a disease that seems to scare the collective shit out of us all so badly that we are always looking for a way to explain why it exists, and then to say, see, that’s why I won’t ever have cancer. Breast cancer is even worse than other cancers in this regard. There’s the infamous “is it in your family?” question that people ask, since now everyone and her mother is “aware” of the BRCA gene, but no one seems clued in to the fact that only a tiny percentage of women with breast cancer of any age are actually BRCA positive. Besides that genetic factor, however, which is clearly not your fault, most of the other breast cancer risk factors we focus on have to do with things that are already sensitive subjects for women. Things like drinking, and diet, and exercise habits, and breast density.

Things like weight.

See, being overweight is one of the only known risk factors for breast cancer, along with a sedentary lifestyle (isn’t that a risk factor for most bad things?). I have to point out that almost all risk factors are determined for estrogen-positive breast cancer, and are studied primarily in post-menopausal women. Risk factors for triple negative breast cancer are mostly unknown, and researchers seem completely at a loss to explain risk factors in young women. But I digress.

Now, if one is overweight and becomes diagnosed with breast cancer, I’m not sure what one is supposed to do with that information. Hang her head in shame? Because, look, just about everyone in this country is overweight; we focus on this as a major public health issue all the time.

So most people are overweight. And yet, most people don’t get breast cancer.

And furthermore, only 5% of the 1 in 8 women who will have breast cancer in her lifetime are under age 40 at diagnosis. Only 2% are like me, and are diagnosed before age 35.

How many of us are overweight at diagnosis? Is weight even actually an issue for very young women with breast cancer? The answers aren’t clear.

And yet we have to constantly be told to watch what we eat, to try to be thin, to be active, or the presumption is that cancer will return and it will be our fault.

But what if we were already thin and active, and we got that shit anyway? It starts to get tiring.

I want people to get out of my size 26 pants and start thinking about how this focus actually makes breast cancer survivors FEEL.

It is a strange burden for someone like me, someone who has always been naturally small and then went through a period in her life, like many women, when I wasn’t small anymore. I gradually put on about 15 pounds over the 11 years I took birth control pills. When Gabe and I met, I was 27 years old, a healthy size 4, at 5’5” and about 125 pounds. Even then, I felt big to myself, having been tiny throughout my teens, graduating from high school at 5’4” and maybe 100 pounds.

Then, I got pregnant, gained about 40 pounds, and had one hell of a time losing that baby weight. I would nurse 8 times daily, work out 3 hours a day and eat small portions of healthy food and it didn’t make a difference. I never ovulated after Lenny’s birth, even though I was having regular periods starting about three months after I weaned her. I had my thyroid checked and it was borderline abnormal but not enough to warrant treatment. And I’m telling you, I just knew something wasn’t right. Well, now we know what it was—my hormones had blown up and I had the beginning glimmers of triple negative breast cancer. But of course, we didn’t know that then.

When I got pregnant with Augie, after taking clomid for one cycle, I weighed about 140 pounds and was a size 8. I felt enormous, though Gabe told me I looked amazing. The day before Augie was born I weighed 178 pounds—more than my husband. Then, I gave birth to that crazy kid, and everything changed.

Damn, did that little boy jumpstart my metabolism and bring me back to myself—my real self, the way I always was before medication and pregnancy. Within six months of his birth, I was down to what I had been when I got married. I just kept losing. I had a ton of energy and started having normal cycles when he was 3 months old even though I was exclusively nursing. When he was 11 months old and I was diagnosed with breast cancer, I weighed what I weigh now: 117 pounds. I was a size zero or a size two, as I am today.

I finally felt like myself again, and then this shit happened. And now every day I have to ask myself if I had breast cancer because it was hard for me to lose the baby weight, or because I gained weight from the pill. All the while, I know that it might be the other way around—cancer might have done a number on my hormones, making it hard to lose weight. Who knows? Wasn’t it bad enough to just have had those issues, without putting the guilt of cancer on top of it? And isn’t it bad enough that I was thin and healthy and feeling great, and then I found out I had cancer growing in my body for years, and now my thinness is considered some kind of requirement for making it to age 40 when other people have no such judgment on their frame? Isn’t it bad enough what breast cancer actually does to your body, and to your body image?

Isn’t cancer bad enough?

Here’s my gripe. We focus so much on women’s bodies and what they look like, how they are shaped, and it’s ridiculous.

I wish being small had saved me from having breast cancer. But it didn’t. I also don’t think that having extra post-baby weight for a few years gave me breast cancer. It just seems like people want to be able to look at you and know why something bad happened, and we focus on the size of breast cancer survivor’s bodies because we are collectively obsessed with focusing on women’s bodies in general.

I have heard so many ludicrous things about my body since this so-called journey began. Apparently, these 34bs are just an abomination of smallness in the breast lexicon, as mammography technicians, surgeons, nurses, and others remark about my “small breasts.” Before cancer, I never thought I had small breasts. Perky, yes, but you know, I thought they were nice. They seemed adequate. Boys and men seemed to like them pretty well. All of a sudden, they were problematic, annoying for mammograms, difficult for the purpose of lumpectomy, and full of that god-awful “dense breast tissue” that apparently is trying to kill us all.

I have heard that I didn’t burn badly from radiation because I don’t have body fat on my chest and therefore “there’s nothing too deep to burn—you know, it’s like deep-frying a turkey; the fat burns hottest.”

Wow, you really just said that to me.

I’ve been told that I won’t feel this injection or this 7 inch needle, but oh wait, yes you will, you’re thin, so it will hurt. I’ve been told I should get a port even though “it will look weird on you because it will stick up on your chestbones.”

Again, wow.

“Your arms are thin but muscly so therefore your veins really roll, and it might be hard to get this IV in.”

Did you just blame your professional incompetence on my goddamn VEINS?

“Surgery will be easy on you! You’re skinny! We love skinny patients!”

We don’t love you back.

“You would have never felt that tumor if you had weighed even 10 pounds more.”

Thanks for scaring the shit out of me as I eat this piece of pizza.

“Wow you are in great shape! Keep it up! That’s the best defense against cancer.”

Well, it didn’t help me before.

You get what I’m saying. One of the most infuriating things about being a woman going through a difficult medical issue is how you are suddenly just DEFICIENT. Everything about me was suddenly wrong: my breasts, my veins, my everything. They gave me a chemo dose based on a 126 pound woman when I was lucky to weigh 113 going into treatment each time. It’s like they wished I was someone else, because then life would be easier for them. Do you think men have to listen to this shit? I’m sure men with testicular cancer are not subjected to tirades about their misshapen balls, chastised for having beer bellies or for having chicken legs, or told that their ventricular structure is just WRONG.

Here’s what I really want to get at—can we just stop? Stop talking to women about their body types all the time? I’ve been hearing this since I was a little girl: oh you’re skinny. Well, sue me. Now don’t I sound like a bitch saying that?

Yes, apparently I do. According to a recent article in Glamour magazine, women (more than men) are judged based on their body type for different personality traits by strangers. Heavier women are more likely to be considered lazy, on the one hand, and nice on the other. Thin women are seen as competitive and driven and also…bitchy.

I’ve heard that one before. Friends joke that they call me that skinny bitch. Girls in high school would say, hey you’re skinny…I hate you. People are always surprised when I am laid back. I work out a lot and people assume that’s because I’m vain, rather than that I’m just a hopeless insomniac or because I don’t want to die from recurrent breast cancer. Think about it. You look at someone and think it’s ok to call her a bitch, or say that you hate her? I know they are figures of speech, joking expressions. That doesn’t mean it doesn’t bother me.

So, I talk about being skinny, even though I’m not actually skinny, because people talk at me about it all the time. Gabe said to me a few weeks ago, I just don’t get it. You’re not skinny. You have a soft belly and strong legs and arms and that bodacious booty! Why do people say that to you?

The sad thing was, his comment kind of hurt my feelings. And that fact highlights that there’s 36 years of reasons for me talking about this now.

When I was a tiny little kid, I found out I had epilepsy. The medication was really toxic and did a number on me. Eventually it made me gain weight, at the same time that it made me never want to eat. My parents worried that I had an eating disorder. In third grade, when I was no longer tiny but also not big at all, a boy asked me if I was pregnant. I was eight. And I still remember that.

When I was hit by a car in 4th grade, I was weighed in the emergency room as they medicated me and contemplated surgery that never took place. I secretly hoped to weigh 50 pounds because I thought that would be a nice round number. I was disappointed to only weigh 45. Upon telling this story years later, laughing at the fact that I was able to distract myself from my own potential death or paralysis by focusing on the scale, a friend told me “Damn Katy. There are healthy three year olds who weigh 45 pounds.”

In 9th grade, my English teacher berated me for my size all the time. Now, she was a heavy woman, and kids made fun of her for that, which was terrible. But I wasn’t like that—I never would have made fun of someone for being big—my mother raised me right. I didn’t like her much, because her class was boring and she was mean to me, but I never said a negative word to her or about her and I continued to get straight As. But really, who was this teacher to ask me if I was anorexic? To tell me I shouldn’t wear shorts because my legs were so skinny? To ask me if I ever ate? Me, that 14 year old who ate like a horse and was just getting used to the idea that girls did this thing called “dieting,” since no one did that in the neighborhood where I grew up, where I often heard such backhanded compliments as “well, you’re fine for a skinny white girl,” or “at least you’ve got a nice booty.”

For a. At least. What bullshit. What man has to listen to this crap? You can be as skinny as Mick Jagger, as big as Tony Soprano or as ripped as 50 Cent, and some women will still be throwing their panties at you trying to get next to you. Guys just work what they’ve got, buy clothes based on their actual body measurements, and focus on other things. And we let them. As a society, we give them permission to be themselves.

I mean, Gabe will talk about how he wishes he could get huge guns like some guys, he will glance a little wistfully at his own muscular arm, and then he will shrug and move on with his life. When we moms were relaxing on mother’s day after the breast cancer walk, we were talking at one point about legs, because I was hot and I needed to put some shorts on and other moms don’t like their legs and therefore don’t wear shorts. The guys were all at the park talking about the Avengers or something, and one of them kept stripping down out of the multiple layers of clothes he was wearing. I’m doubtful that the shape of legs, the relative hairiness thereof, or anything else related to any one of their bodies was on the agenda that day at the park.

We do this, because we are taught at very young ages to do this. I can’t stand having to listen to people comment on my daughter’s size. Yes, goddamn it, she’s little. So freaking what. SHE IS SIX YEARS OLD. Why are you looking at her body? “oh, she’s so tiny!” “She’s such a peanut!” “Do you feed her? “ (Yes, idiots have asked me if I fucking feed my daughter). “She’s so petite! The boys must love her!” What? Are you sick?

Not off the mark, though. Little boys have said they like Lenny because she’s cute and little. Dads have remarked about how thin she is, and said that it’s good she got my body type and not Gabe’s. Thanks for making me know that you have checked out both me AND my little kid.

We had to switch pediatricians because of Lenny’s small stature. He kept telling us she wasn’t big enough, she wasn’t heavy enough, and that we should feed her butter and whipped cream to fatten her up. Seriously—that was his medical advice. He made me feel like a bad mother. And other people made me feel that way too, as they glanced askance at my small baby and talked about how proud they were of their kid who was 90th percentile. What was that about? Were these moms implying that their baby could kick my baby’s ass? What is WRONG with people? Anyway, finally we changed doctors and he, being a very slight man himself, never seemed to take much notice. She sleeps all night? Is active? Smart? She’s fine. At one point he was worried because she only showed up as 2nd percentile on the weight scale.

“Look Doc, I’m second percentile too. Someone has to be second, or they wouldn’t be percentiles, would they?” He laughed at that, and then helped me stop Augie from escaping the room in a mad flash.

And I thought to myself, second percentile. Yes, that’s true. And she can do cartwheels on the balance beam. She can do multiple pull-ups in a row. She can hang on a bar in the park forever, holding up her 34 pounds with those impressive little biceps. She’s not lacking in the brains department either. Hell, she’s arguably smarter than me. And her doctor. And lots of other people.

And she is so awesome, just the way she is. Today I told her that we were going to take pictures for the blog, because I was writing about how people always comment on who is big or small and it shouldn’t make a difference but I wanted to show that I was proud of her the way she is. She held up her hands and said “You should just like how you are. Right? You can’t change.” While Gabe was tearing up at this pronouncement , I said, more importantly, though, there’s no reason to—you’re fine just how you are.

And of course, she is fine, but her size has its advantages and its disadvantages. It will be both easy and difficult to find clothes that fit. She will be noticed, for better or worse. She will be aware of herself when she shouldn’t have to be, because she will remember how everyone talked about her being little from the time she was born. For every nice, reasonable respectful boy who is attracted to her in part because of her petite size, there will be another who preys on her for the same reason.

I should know. Especially in high school, I knew that my petite frame was one aspect of my general attractiveness to boys. It also made me a target, as boys who liked to wield their comparative large size and strength over others chose me as easy pickins. This fact made me hyper aware of my surroundings at all times, and, I’ll admit, it made me mean. I learned how to fight. I got good at it, even as I knew I could never win these fights based on strength or size alone. One time, when I was a senior, I went to an informal dance at my high school. A boy who had preyed on me before picked me up, trapping my arms at my side over my head, like I was a rag doll. He was high on something, and he told me he was taking me into the boys’ bathroom. He must have remembered that other time he picked me up and started to molest me, when I punched him in the face and head with my hands until he let me go, more out of shock than pain. There was no way I could fight him with the way he was holding me. He was a football player, so much bigger and stronger than me. He told me there was nothing I could do about it. I looked around and realized that even though there were thousands of kids there, no one was going to help me. My friends couldn’t see me, other people weren’t paying attention, and his friends were in on the whole thing, I’m sure. I thought I was beat. I was terrified. Then I realized something. I was sober, and I was smarter than him. I had to have some kind of advantage. What was it? Oh…

So I straightened my arms into a diving pose, sucked in my breath, made myself smaller and narrower than I thought was possible, and slipped right out of his grasp. I landed on my hands and feet, and I ran.

I told someone this story years ago and she said, I guess the moral of the story is that it’s good to be strong, so girls should work on that, but it’s also just good to have your wits about you.

I said, the moral of the story is that boys and men shouldn’t be sexual predators. My size and strength have jack shit to do with anything.

So let’s just stop. Stop talking about who is skinny fat, whatever that is, who is strong, who is curvy, who is tall or short, who is lopsided.

Someone once asked, ain’t I a woman? And I say, yes, you are. If you have two x chromosomes, you are a woman, so stop trying so goddamn hard to prove it. Apple, pear, or hourglass shaped? Still a woman. 2nd percentile or 98th? Still a woman. Big floppy breasts, small perky breasts, mastectomy scars? Still a woman. Long flowing hair, short pixie cut, bald as the day you were born? Still a woman. Long legs? Stumpy legs? Big muscles? Pencil arms? Curves all over the place? No curves at all? Gay? Straight? Kids? No kids?

Still a woman.

Is your body functioning correctly? Than claim it, own it. Not everyone is so lucky.

I have lost the healthy function of almost every single part of my body at some point: my legs, my brain, my heart, my left arm, my lungs, my liver, my sweat glands, my pectoral muscle, my immune system, my goddamn cellular structure. I have lost my hair. I have had chunks of my breast removed, leaving it indented on one side. I have gone through menopause. I have gained weight from medication and gotten so skinny from chemo that I could hardly walk. I have scars and tattoos. And I’ve been the same me the whole time—still small, still pissed off about a lot of things, still verbose, still sarcastic.

Still a woman. A woman who had breast cancer, and had to hear about her body, her hair, and her face all the time when she was worried about her life. That's the skinny, folks.

Monday, May 14, 2012

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.

Wednesday, May 9, 2012

Day 735: KatyDid Cancer...For Real?

Wow, what a week.

What a couple of years, actually.

I have so much to say, and yet I don't know where to begin. So I guess I will begin with yesterday's news.

Most of you know that I had a clean mammogram, though saying "mammogram" in the singular is misleading. I had ten of them yesterday: six on the left and 4 on the right. I have never gone in for a mammogram and had fewer than 8 radioactive pictures taken. But regardless, the results were as close to "normal" as someone with a history of breast cancer is allowed to have. The innocuous sheet of paper that at one point warned me that I had breast cancer told me that findings "appeared to be benign." I have been so nervous, in a way that those who have not done follow-up scans post-cancer-treatment cannot understand. I have been someone else, someone stuck in a strange place where I wanted a time machine that could either stop time or speed it up, all depending on the results of that damn test. While I rubbed my sore chest after the procedure, I had the following text exchange with Gabe, waiting three rooms away:

K: finally done with images waiting to see if I need more and to talk to radiologist
G: OK. I love you! I hope you don't need more.
G: Did you get either of these jumble words? ISOTH or DOBRIF
(K thinking to self, fucking jumble words? ARE YOU INSANE? Then thinking to self: Hoist. And Fibroid. Oh wait, there's only one i. Wait a minute...forbid, that's it. Fibroid? Can you say TUMORS ON THE BRAIN? Meanwhile, mammo tech comes to get me and says, Ms. Jacob, follow me. Why, do I need more pictures, I ask in a panicked voice. She looks at me and realizes that she is about to needlessly induce panic by asking me to wait to get to a private room to get the results. No, you win the prize today, she said. You don't have to come back for a year. Sign here. What? I ask? It's normal? Yes, as normal as can be expected. oh, I said. GIVE ME THAT PEN!)
K: I'm fine! Don't have to come back for a year! Getting dressed!
G: Yay! Love you so much SOOOO relieved!

And then, I proceeded to wait another four hours until I actually got to leave the damn place. I had to wait for the surgeon next. Is there a possibility I can get in sooner? Yes, it's possible, they told me.

Well, really, isn't anything?

So when I finally saw the medical student who preceded the P.A. who preceded the actual surgeon I had been there for two and a half hours. This young kid hands me a survey. He tells me it's a research study they're doing on chronic pain, because they have started to realize that a significant portion of women, as high as 40%, have this problem.

REALLY? Who is going to pay ME to verify that fascinating revelation? Remember when I begged you all for A YEAR AND A HALF to get me some physical therapy because of issues with chronic pain and range of motion problems? Oh wait, you're like 22, so you have no memory of that. So this entire survey is one long annoying pain scale, the kind that people like me with high tolerances for pain should never fill out. The kid actually said "Yeah, most women who come in here have a high tolerance for pain." You think? Anyway, 1 is the least pain, 10 is the most. Can pain ever really be higher than 6? That's what I said in labor before any drugs when the digital meter almost broke from my continuous contractions. To make matters worse, this was a "subjective" pain scale, asking me about all kinds of different pain and whether I experienced them: stabbing. sharp. achy. shooting. throbbing. stinging.

And then it got interesting:

Gnawing? Fearful?

The guy looked at us a little fearfully, actually, as Gabe started playfully gnawing on my arm. Um, the student said...you haven't even gotten to the last one yet.

"Cruel or punishing?"

Get out. It doesn't say that. What the hell does that even MEAN? Oh, if only I didn't do research for a living, I would have a party with this survey. After choosing zero for cruel and punishing, I filled out the rest of the thing, which had all kinds of other questions about how I feel and have felt in the last 2 weeks. Do I have trouble sleeping? Yes, always. Do I want to hurt myself? Kill myself? Do I feel worthless? Um, wow. No. Have I been nervous? fidgety? Unable to concentrate? At that point I stopped circling numbers.

"You know what?" I asked the kid. "I just had a mammogram. My two year mammogram to see if I have breast cancer again. It is worthless to ask me if I've been nervous and unable to concentrate because I have been thinking about nothing else and pretty useless in other areas of my life. You all need to time these surveys better."

He looked so relieved to leave the room. I can't say I blame him. Then the P.A. came in, and I must admit I like this guy. He's pretty nonchalant. He's the one who actually gave me the physical therapy scrip, so I thanked him for that and told him how much it helped me. Then I was about to rip my gown off to offer the P.A. my boobs so he could do an exam, but I stopped myself when I realized he wasn't going to ask to do one. Just about anyone on earth could have given me a breast exam right then and I wouldn't have given two shits. He asked me a few questions and left. The surgeon came in, felt my boobs, told me I don't have to see her again for a year, and looked shocked when I told her how far my scar tissue had traveled according to the physical therapist. I got dressed and Gabe and I went out to eat. I had this delicious veggie filled crepe and some grits. I drank 87 cups of coffee.

I felt like I was walking on air. Or, even, water.

Gabe went back to work and I went back to the hospital to wait for my visit with the oncologist. This seemed pointless to me. He would ask me some questions (any aches or pains? still having cycles? taking any new medications? feeling tired?), manipulate my body and undress me and then tell me (say it with me, you know what's coming): "You look great."

Why do we have to do this dance after the wonderful news I just received? Why can't I just go home and celebrate? Of course, I know why. Here's the thing. My triple negative breast cancer was never very likely to recur in the breast. It is a cancer type that is much more likely to metastasize to distant areas of the body. Mammograms are actually likely to be normal for me. Not as likely as for someone who DIDN'T HAVE BREAST CANCER, but still, you know what I'm saying. It's the aches, pains, tiredness, that matter.

But I was still flying high off that mammogram news and the sudden realization that I MADE IT TWO YEARS. Two years with no evidence of disease. The critical two years that every triple negative breast cancer patient can't believe will ever come. And yes, my cancer could come back. It could spread. I've heard it happen to too many women before me not to know that, not to think of the women who made it two or three years out and felt great until...they didn't. And they found out they were stage 4, when they had initially been stage 1 or 2. It could happen, because it sometimes happens with breast cancer, especially when your disease type is aggressive and especially when you're young.

But it hasn't happened yet. Not in two years. And that opens up a bit of the world for me, the world where you all live and I have only visited recently. I have tried my best to be normal, all the while knowing that I will never be the same. While I was waiting for my oncologist, I started checking facebook. I sat there cracking up at the following image posted by Jennie Grimes, a woman I know from ROW who is five years younger than me and dealing with mets, waiting for scan results today that I have never had to do. I wrote her: "LOL! People being wrong on the Internet."

I'm laughing just writing that, even as I'm thinking of her and wondering how she's doing. But here's the thing. As soon as that mammogram came in, knowing what I know about how breast cancer really works, knowing that the mammogram shouldn't have given me this feeling of freedom, knowing that being two years in doesn't mean I won't be dealing with mets myself someday, I started thinking like that anyway. I started thinking random, not cancer...I started thinking about people being wrong on the internet. And it was such a revelation:

...I sat there reading GQ because the hospital's reading choices are completely whack, and there was a dated article about Chris Evans just after Captain America came out. The article was kind of boring, but the pictures of him in these uber-stylish clothes that I can't imagine any man in Chicago ever wearing were interesting. He was showing off his pecs in several of them, and since he's famous for them, you can't really fault him for that. And that's how I learned that Chris Evans has chest hair. Not Steve Carrell style chest hair, but nice sexy chest hair like a 30 year old man should have. And then I started thinking, what? Do they make him wax for the movies? Just airbrush it? WTF? That's like getting a boob job if you DIDN'T have breast cancer. Why are we always trying to improve on things that were ALREADY AWESOME?

...I was cheering on another lady in the waiting room who decided that one of the staff was rude. She was all, oh hell, I've been coming here for nine years, so I don't care about me, but what about the women who are new? What about the women who don't know what their lives will be like and they're just starting chemo? You can't treat people like that! I'm writing a complaint. She should work with some other types of patients. And I was thinking YES! TELL THEM SISTER! And then I thought, NINE YEARS? Hell if I keep coming to see these people for nine years! You should be pissed off just for that!

...I started planning dinner even though I wasn't remotely hungry after that crepe. I also wondered if I would have enough time to shop after the appointment ended and before my parking validation would expire.

...I didn't even mind my little dance with the oncologist. He asked me the questions, I asked him if I should be taking vitamins, he said no, I asked if two years was really the critical point for triple negative cancer, he said the first two or three years is always the most critical for any cancer. I said I felt great. He said You look great. When he left after about a seven minute visit that I had waited 5 hours for, I got dressed and started to upload the picture of me with my evidence of a clean mammogram so I could tell folks via FB who had been worrying about me all day. I waited for five hours, and then spent an extra 90 seconds typing in my status, and a nurse came in demanding to know if I was waiting for something. So I refused to look up at her, kept texting and said "Not anymore."

...I found that I did have time to shop, so I went to Zara and bought myself this pair of ridiculous $40 shorts that I can't wear to work, obviously, and that I'm not sure I can really wear anywhere, since I don't go clubbing and the only person who cares about seeing my legs in shorts this short is married to me and gets to see them all the time. I also tried on a skirt so short that it had little shorts sewn in, just like dresses for 2 year old girls. I started wondering if Zara actually IS a store for 2 year old girls, when I put a dress on that fit me everywhere else but was extremely tight on my chest. MY CHEST. There's hardly anything left! Who are they making these clothes for, exactly? Then, I went to the Disney store to get something for Augie for his birthday and I felt like I was walking into a physical description of the ways we destroy our children. On the right side, I found what I can only imagine to be the "boy aisle." Avengers stuff, spiderman, toy story, cars. On the left, there were princesses. Nothing but princesses. In the back in the "neutral zone" were the classic toys that some genius thought that, gasp, both boys and girls might like: Dumbo. Lion King. Winnie the Pooh. Mickey Mouse. Now, Mickey I get. He is the original disturbing, creepy yet androgynous Disney character. But what does a mom in my situation do? My son is obsessed with Snow White. My daughter thinks Hulk is "green and cute." Augie is more likely to play dress-up than Lenny is and she likes to play with his cars. They both like Pumbaa and 101 Dalmatians. So, I bought a few plush animals we need like we need collective holes in the head and thought to myself, our entire society is going to hell in a handbasket.

...I got all pissed off when I got back to the parking garage and my damn parking ticket wouldn't work in the automated payment terminal. I had to call for assistance from the little parking vending machine. The woman told me to drive to customer service. Fine, I said, where is that? The droning voice answered: "you need to drive to customer service." OK, where? ground floor? This is an enormous parking garage. "You need to drive to customer service." This went on, until I slammed my hand into the machine in disgust. The voice continued talking and the woman behind me said in response to it, "Um, she already left."

...I picked Gabe up early from work so we could go home and take a walk together before getting the kids, something we rarely get to do. I texted our next door neighbor, not beating around the bush at all: "I had a clean mammogram and Gabe and I want to celebrate! Can you or your sister come over after dinner for a little while?" She said sure, Gabe took the kids to the park and I made salmon that we ate on the porch in the beautiful early evening air, and then Gabe and I went to a dead little bar in our neighborhood and got some beer and an enormous brownie sundae. I made him drive because I was fascinated by the response to my status update. Um, 76 likes? more than 30 comments? Do I even actually know that many people? We had 110 people at our goddamn WEDDING. There were 60 people at my 35th birthday party when I was bald and everyone thought I would die so they'd better make this one. Now, I realize that teenagers get that kind of response to their posts about eating breakfast, but this was new to me. Oh, just facebook friends, I thought. I know like 4 people in real life. But actually, that isn't true. Many people who responded are people I do know and interact with in my current, real life. There are all kinds of other folks I don't see in person thrown in there too: ex-boyfriends, friends from college, high school and even grade school, old co-workers, relatives, teenagers who babysit my kids, women from my crew team, moms from playgroups that haven't met in four years.

All people who don't want me to have cancer. People who don't want me to die. People who were happy for their own reasons, including, as Gabe said, that "some of them are probably hoping they don't have to hear anything from you about cancer anymore because they're sick of it!"

Well, too bad. Unless I stop writing this completely, which is a very real and even imminent possibility (are my random ramblings really interesting if they aren't about cancer? this is the thing that still confuses me about blogging), cancer is a part of me now. I do not see the victory in going back to my old self. I'm not sure which self that would be. I am different now, and I'm ok with that. I can do a lot of things and have done a lot of things. I am not trying to prove anything to anyone, not anymore. But that isn't to say that things haven't shifted. After all, for at least the next several years, I will have cancer colds, where you have normal colds (though when I wrote that blog, it turned out to be strep, not a cold). I will be judged for my every action: my diet, my drinking habits, the size of my body, my use of household cleaners. I will try to avoid doctors like the plague because I feel like the medical community has essentially moved into my house and I WANT THEM OUT. Time for a pap smear? Excuse me, aren't I one of the 20% of American women without HPV? What are the other likely causes of cervical cancer, exactly? Why would I do some cancer screening I don't need? Oh, I guess because I like my doctor and I want him to see how well my hair has grown out.

I'll never have that long hair again, if only because the past two years have taught me that the two years it would take to grow it back are better spent doing other things. I'll never feel that my breasts are an erogenous zone. I'll always have that husband who will see them that way for his own sake, until once in a while I realize he is really feeling for cancer lumps, and then I will smack him in the face and yell at him because I don't want those two parts of my life to ever meet again. I will not have normal backaches after spinning. I will have less patience, not more. I will probably never be able to do more than 5 pushups in a row, or ever do pullups or chest flys, because my pec is burned and my pain, while so much better, is still chronic. I will have a 400% higher chance than you of developing another form of cancer because I had breast cancer before age 40. I have an 85-90% chance of making it to five years, meaning that there's a 10-15% chance that I won't live to see my 40th birthday, which is different than the way the odds look for you. Things other people care about will seem petty to me a lot of the time, though as I discovered yesterday, even the petty has the ability to come back to me.

For a while at least, I can live in that space. The one where my biggest concern for the moment is what perfume to wear to the bar where no one else will be. Decisions decisions. That place where the choice is obvious for reasons that are different than your reasons. The room where I smile as I spray myself with "Happy Heart."

That place where I think about other things. The world where Katy Did Cancer. And then didn't have to anymore.

Monday, May 7, 2012

Day 733: Pass the Mic: Listen to Your Mother Chicago, 2012

Before I get deep into describing the experience of last night's Listen to Your Mother performance, I'm going to give a shout out to Adam Yauch. I am old enough to have seen many celebrities of my youth die--usually of things like drug overdoses, alcohol poisoning, suicide, plane crashes, or gunshots. I can't remember any other famous person who holds a place in my memory dying of something as ordinary and sad as a rare cancer (of the salivary gland).

In high school, there were just a handful of current bands I gave a damn about, including A Tribe Called Quest, the Chili Peppers, Fishbone, and the Beastie Boys. We did all kinds of things we weren't supposed to do while listening to those albums--Check Your Head, Paul's Boutique--in a time when hip-hop artists played instruments, swore rarely, and wrote songs that were too long to play on the radio. Back in the day when we had radios. Back in the day when we didn't share those things we weren't supposed to be doing with anyone. Back in the day when we kept journals or just kept it to ourselves. And as I reminisce about those times, I wonder how those tired cancer arguments could possibly apply here. What...not enough attitude, moxie, will, talent? According to Dr. Richard Smith, the director of the Head and Neck Cancer Program at Montefiore Einstein Center for Cancer Care, this type of cancer is "Just bad luck: not linked to alcohol abuse or smoking or HPV." And who are we to assume those things in the first place? Could the purchase of purple merchandise somehow have saved MCA?

Actin like life is a big commercial.

I'm sorry that MCA died from cancer when he was only 47. But I am so glad that for maybe the only time in my life, I got to follow his advice last night and...

Pass the mic.

Chicago listened to its mother last night, and the show was just magical.

I think the audience thought that as well, but that's not what I mean. We all did a great job, everyone sounded and looked wonderful, but that's not what I mean.

It was just a magical experience for me.

It's hard for me to describe why this meant so much to me, and I think to everyone else who was a part of it. I'm going to try to capture the things that I will always remember, and think of, about standing up on a stage and reading something that I had written in front of a bunch of people. I won't be able to do it justice, but it's my blog, so I get to try.

Listen to Your Mother Chicago 2012: I will always remember:

...how indescribably nervous I was during the audition. I had never read any of my blogs aloud to anyone before, and I had never done a real audition for anything before either. When Melisa told me my piece was beautiful, I assumed she said that because it was, in part, about cancer. It was so gratifying to learn that isn't what she meant at all.

...our first rehearsal, when I realized that a lot of the cast members knew each other, and I didn't know anyone. That is when I started to learn about this blogging community that I didn't know existed. Though I have been writing a blog for two years, in some ways, I don't know anything about what blogging really is. I don't follow blogs, or go to conferences. Shit, I don't even have twitter (or is it "a twitter?" hell if I know). It's been really interesting for me to see how supportive everyone is of one another.

...our second rehearsal, when everyone in the room just cried and cried during and after my piece and Tracey had a hard time even introducing Judy, who was reading after me. I know my blog makes Gabe cry, but before that moment I had no idea that it had the power to touch people who don't even know me that well. Not being overly emotional myself, I didn't quite know what to make of that. And again, I thought it was probably a little bit because of the whole cancer thing...but not entirely. I guess I have figured out a way to write the things I am too lighthearted to say out loud.

...how meaningful it's been for me to know these people who know me because I am a writer. When I was a kid, my friends knew to fold "writer" into their understanding of me as a person. I was sardonic, and swore a lot, and liked to watch sports and wasn't into girly things (well, except maybe shoes), and I was pretty lighthearted, but I could write intense poetry and prose too, and, well, that was just Katy. One of my friends from high school wrote me an email recently and said, "Did people really pay that much attention to your hair? I never really thought about it. When people ask me about you, the first thing I say is, oh, she's quite a good writer." But as an adult, people I have befriended have known me because of work, or kids, or something else. Anything I've written I have kept to myself, outside of what I write here. So these words come as quite a shock to some people who do not envision me writing them. And then, I met a group of people who didn't know any different, and saw this as just a part of me like all the other things they were getting to know about me. It's brought me back to myself, the way I really see myself. I will always be grateful for that, even if I stop writing this blog soon, which is something I assumed I would have done by now, but haven't yet gotten around to doing.

...that no matter what, my analogies are always a little bit off. When we walked into the theater for the first time yesterday, we all said...wow. Now, the Biograph/Victory Gardens Theater is not intimidating at all, and it seats just 300 people, but we were all acknowledging that this was real, we were really doing this thing. And so of course I said: "This is like in Hoosiers, when the kids walk into the big stadium for the first time." Thank God for the few women who understood my reference--or at least pretended to-- of a 1980s high school basketball movie.

...that after the show was over and we met in the dressing room, I thought of Hoosiers again, and I wanted to say "I love you guys," but I'm neither corny nor Gene Hackman, so I didn't.

...how I felt like I would crawl out of my skin with nervousness waiting for my turn on stage. I was third to last. But time seemed to fly by, and when Melisa said my name, I walked onto the stage, and...

...I did it. I didn't need to look down, since I had memorized the piece. I didn't forget anything, or fumble. I couldn't see my family, even though I had saved seats for them, because the lights were too bright to see past the second row. And yet, that helped me, as it didn't really seem all that different from reading the piece out loud in my living room. I know that it is an understatement to call my reading style "understated," and yet, people laughed at the right points. I heard all the sniffling and crying. I pointed in the general direction of where I thought Lenny was sitting at the end. And so, I did it.

...that the first thing Gabe said to me afterwards was that someone had cat-called me as I walked onto the stage. He sounded indignant at first, saying that as I walked up a guy right behind him said "aww yeah," and he wanted to slug him and say that's my wife! I didn't believe this story at all until one of our friends confirmed it. Being a guy, Gabe ultimately decided to be proud of this. Being Gabe, his pride was perhaps misplaced: "Hey...I picked that dress!"

...how my friends and family came looking for me, and I was so pleased to see everyone but also so distracted, because the only person I really wanted to see was my daughter.

...that I got to do something few parents ever get to do. While I am still alive, and presumably healthy, I stood up in front of a room full of people and told my firstborn child how much I love her, in spite of my imperfections and the bullshit that we have gone through as a family. I told her what I think of her as a person, and how much I hope that I get to see her become more of that person as she grows up. I told her that I don't want to die and that knowing her has made living even more important to me. In five minutes, I said just about everything that I think I would want to say to her, whether I had all the time in the world or whether my time was up.

...how she cried. She cried when I hugged her, and I thought it was because she was traumatized by what I had said, and Gabe thought she was just hungry. Now I realize she was tired and overwhelmed and really, really shy...because everyone in that damn theater knew who she was by name and it was too much for her at that minute. She was the only small child in the audience, so people were looking at her, nodding, knowing she was Lenny and knowing what that meant.

...how she looked when we went to pick her up at my mom's house after we went out for a drink with the cast. She was so completely asleep that she didn't move when Gabe took her in his arms, just like she was a baby, and carried her to the car.

...that everyone told me that Lenny would always remember this night, and that I agreed, all the while knowing that I didn't do this for her at all, I did it for me. Parenthood is a selfish, selfish, beast, but sometimes it makes us do the right thing in spite of ourselves. I will never regret having my six year old daughter in the audience last night.

...how my heart caught in my throat when I got home and realized it was really over, and how I realized that part of the reason that hit me so hard was that I now had nothing else to distract me from my anxiety over tomorrow's mammogram.

...the way we all--the cast, the producers--talked about "next year." We discussed which pieces to choose, what venue to use, whether the show should move to two nights as opposed to one. And, because we are adults, we did this in the most postmodern way we could. As parents, we know that there are moments that are incredible, but that will never be repeated. We are able to look back at the entire process that led to those moments and appreciate them, somewhat mournfully acknowledging their inevitably quick passing. We talk about next year because most of us know that we will never do anything like this ever again in our lives, and by speaking of it casually like it could happen again, we are admitting just how much this specific moment in time has affected us.

...that one of the joys of parenthood is that you get to take moments to heart that you don't even witness yourself. My stepfather told me that as they waited in the elevator in the parking garage after the show, people were looking at my daughter. So my mom said, "This is Lenny." And everyone else said "We know that. She IS beautiful."

In more ways than you could ever know.

Thank you to everyone who came to see the show, to every single cast member, and to the producers for giving me an opportunity that went way beyond giving an outlet for my voice. You helped me say something to my daughter that I could not otherwise say.

I love you guys.