Day 1,006: Why We Will Never Prevent Breast Cancer

I am tired of all of the articles about breast cancer prevention, even the ones that I think are right on the mark. I have a very specific reason for being tired of it: I was a young nursing mother, a manically-active size 2 who didn't drink, when I was diagnosed with a rare and aggressive form of breast cancer. So I understand that being overweight and inactive and never having children and drinking a lot increase the risk of contracting breast cancer, but none of those things applied to me. There are plenty of women who are overweight and inactive who are diagnosed with breast cancer, and plenty of women who are overweight and inactive who never get cancer at all. These are excellent, common sense risk reduction (NOT prevention) techniques: staying fit, eating healthy foods, not drinking or smoking.

But the thing is, those are risk reduction activities for just about everything bad that can happen to you.

Breast cancer is different. Breasts are like sponges, soaking up everything in the environment.

And breast cancer--yes, even triple negative breast cancer--is caused by shifts in hormones. That is simply not true for many other cancers and diseases.

It is a known fact that women are at an increased risk of developing breast cancer in the years directly following pregnancy and lactation. Now, we don't expect women to stop having babies due to the increased risk of breast cancer, do we? We don't terrify them, make them feel guilty for getting pregnant, and judge them on this basis. It is actually a risk factor to NOT have children, or to have children later in life (damned if you do, damned if you don't). And of course most women have babies and nurse them and do not get diagnosed with breast cancer in the subsequent years.

But I did.

I fully believe that pregnancy, nursing, and the wild hormonal fluctuations they entailed FOR ME (not for everyone), including my wildly over-producing milk supply that never regulated in the seven months I fed Lenny breast milk (I would produce 12 ounces when she only ate 3, and no, it never normalized. I had near-perfect supply and demand with Augie, so I know the difference) contributed to my breast cancer.

And I wouldn't change a thing. That is an unavoidable risk, and one worth taking. These kids are damn cute, and I love them, and I'm glad I had them, obviously.

I'm even glad I had Augie, who was conceived after I took one round of Clomid, because I never again ovulated after my first pregnancy. My hormones were completely off-kilter, and I knew something was wrong before I even knew that I wasn't ovulating. I only took that ovulation-inducing drug for one cycle, and I saw the perfect egg that became my son, and I don't regret it. But I do believe that it probably advanced the cancer that was already there to ingest those hormones. In May 2010, when Augie was 11 months old, I was diagnosed with breast cancer, and told that I had had it for probably 3 or 4 years--matching up exactly with my exploding post-pregnancy hormones after Lenny's birth.

I have talked to many women, especially triple negative women, who got pregnant for the first time after stopping birth control pills. Oral contraceptives increase the risk of breast cancer, especially triple negative breast cancer, especially if they are taken for long periods of time. We know that breasts are sensitive to hormone changes in youth (which is why hormones in meat and milk are problematic, and can lead to early puberty in girls), which can help explain why going on the pill at a young age can increase the risk. Here is a link to one study, on this issue. There are dozens more, but I hesitate to link to the sites that list them, because they are almost all pro-life, anti-abortion sites that seek to demonize women who use birth control and the policies that support that usage. I am in the unfortunate situation of killing the message because I don't want to pay the messenger.

I am not making this up. I am not a conspiracy theorist, and I am not hiding some conservative Rush-Limbaugh agenda. The World Health Organization has listed estrogen-progesterone oral contraceptives as a Class One carcinogen, on the same level as hormone replacement therapy for menopause. WHO gives a very interesting disclaimer, saying that oral contraceptives are known to help prevent cancer in the ovary and endometrium.

Why the need for this disclaimer, which, by its very nature, implies that WHO knows exactly what kind of cancer the pill causes: breast cancer?

I am sick of articles about prevention that focus on my need, and every woman's need, to become a health guru who lives in isolation and works out constantly and wears a hazmat suit to go out into the polluted environment and doesn't eat food she doesn't grow herself, when those articles fail to mention the fact that SIMPLY NOT INGESTING HUGE QUANTITIES OF ARTIFICIAL HORMONES CAN DO A LOT TO HELP REDUCE BREAST CANCER RISK.

These articles barely give a nod to the pill. How can they? Are we prepared as a society to accept what this means? Are we prepared to admit that the sexual revolution never happened, that the pill didn't lead to sexual freedom and emancipation? Are we prepared to force men to think about birth control on par with women, to stop saying that the pill liberated us? Are we prepared for the potential for extra babies to be born, for married couples to give up on that supposed "spontaneity" that the pill offers, for more men to get vasectomies?

I'm afraid to say that we are not. I for one, however, do not need to ingest carcinogens to be liberated. When we think we are being liberal, and we offer teenagers birth control, why is the focus on the pill, which has such harsh side effects that 60% of women and girls stop taking it during the first year? Why is the focus on a form of birth control that ONLY prevents pregnancy, and does nothing to prevent STDs? We continue to pass out the pill on college campuses like it is a placebo, like it is candy. Shit, we passed legislation making it illegal to process credit card applications on college campuses, and no one ever got uncontrollably sick or had strokes or gained weight from a goddamn credit card. We have stopped doing this to women who are in menopause. We need to stop doing this to girls and young women who simply want to prevent pregnancy.

I do not regret going on the pill at age 18, when the entire medical establishment told me that the only harm it would cause would be the potential for blood clots in heavy smokers. I do regret staying on it when my long-term boyfriend and I broke up when I was 24, because I did not use the pill for birth control purposes for years--I made everyone wrap it up, until it was clear that Gabe and I were in this for the long haul. I stayed on the pill because my cycles were regulated and I had less monthly illness and anemia, and because I had no reason not to--I had no idea that it was linked to breast cancer, and triple negative breast cancer didn't really exist yet as a concept.

But now we know, and we have other options--condoms, of course, but also non-hormonal implants like Essure--and we still ignore the entire connection. So we will continue to have women with 17% body fat who could kick your ass in a marathon contracting breast cancer at young ages. And other women will berate women like me for trying to take options away from them. I have been unfriended on Facebook for talking about this. People have said that I am an anti-feminist, and that I am trying to stop women from having control over their sexuality.

Me. The one who kicked a guy out of my apartment and told him to go fuck someone else because he wouldn't wear a condom. The one who is sick of hearing talk of consent because it seems to me to be the world's easiest concept, even for a teenager (my first time, the guy asked me the teenage version of the consent question: "REALLY?!")Me, the girl who sat on the senior class council in high school and suggested that we leave as our class gift, not a plaque or a statue, but a condom machine. I even went to an elderly male dean to make my case over the issue, devoid of any embarrassment or concern over what he thought of me.

I am sure that there are various factors that led to my being diagnosed with triple negative breast cancer at age 34, including many that I could not have avoided no matter what I did (such as having a CT scan of my head at age 6 to diagnose epilepsy; radiation to the chest and head at a young age is a major risk factor for later breast cancer). I am not trying to demonize the pill or make women who take it feel guilty or afraid. I simply believe that we are owed real information. I believe that the pill should continue to be offered as an option, as long as the risks are understood. I believe that there are cases (probably far fewer than we are led to think) when the pill can offer medical help to women who have various hormone imbalances or other ailments. (I still cannot get over the fact that my doctors considered putting me on the pill when I was 12 because I was severely anemic due to my heavy periods. They ultimately decided not to, because the pill would have counteracted my anti-convulsants. So, I took some iron supplements for a few months AND WAS JUST FINE). I also do not believe that if women stop taking the pill, no one will get breast cancer. Clearly, that is not how breast cancer works. But it would help to reduce risk, and some cancers would indeed be prevented--we know that is true about hormone replacement therapy, so there is no reason to believe it wouldn't be true about this. Plus, not taking the pill is a decision that is damn easier to control than when you get your first period or whatever the FDA approves for the food that is offered at your grocery store. I simply believe that we should acknowledge what the medical community already knows, and stop making women feel guilty for every few pounds they put on or every few days when they couldn't get to the gym while we continue to ignore another major issue because it does not behoove us as a society to mention it.

It is especially mystifying from a policy perspective. We have a liberal President who was able to include coverage of birth control PILLS under landmark health legislation. On the other hand, the non-hormonal alternatives such as Essure remain prohibitively expensive for many, and condoms are not covered. So we have legislated a carcinogen as the most economic choice for pregnancy prevention. This just makes it harder for women to reduce their breast cancer risk, especially for lower-income women. Lower income women are already at higher risk in relation to the other known lifestyle risk factors for breast cancer, as quality food is harder to buy in many poor neighborhoods, and it is often unsafe to exercise outside, too costly to join a gym, or too difficult to fit exercise into a schedule that includes multiple minimum wage jobs.

The fact is, we do not tell boys or men that they need to ingest artificial hormones in order to be sexually active. And when we do develop drugs like Cialis and Viagra (always covered by insurance, of course), we storm the prime time commercial spots with information about the potential risks of those medications. When we decide to be progressive in talking to our boys about sex, we talk about asking permission and wearing a condom and being respectful. There is an underground reality of boys and men taking testosterone supplements or steroids in order to perform better in athletics or improve muscle mass, but we not only do not condone such behavior, WE HAVE MADE IT ILLEGAL. We shun those who do such things, and then we continue pumping our girls, mothers and friends full of stuff that might harm them and call it a travesty if anyone questions the practice.

The pill is the breast cancer elephant in the room. We are collectively uninterested in removing the elephant, so I guess we are going to have to keep cleaning up its shit. I just don't think that breast cancer survivors, who are the objects of such harsh judgment by many who look at us disdainfully as they attempt to ascertain exactly how we gave this disease to ourselves, should be the ones left holding the shovel.

1,000 Days of KatyDidCancer

I just sent my husband a text message. I returned home from the gym, changed out of my sweaty clothes, started to put some laundry away. Something was gnawing at my mind. He is with the kids at their gymnastics classes, and I always prepare to put them to bed as soon as they get home after the long, exhausting day that is Wednesday in our family. But something told me I needed to check my blogs, so I did, and then I realized:

Oh my God.

And I texted him:

"Today is my 1,000th day of KatyDidCancer. I have to write tonight."

He might not have seen it yet. He's busy, he's probably throwing juice boxes at kids with one hand and driving the car with the other. When he sees it, he'll know. And he'll put the kids to bed tonight.

This has become a part of our post-cancer routine. Not me not putting the kids to bed; we always took turns with that. THIS. Me writing and people leaving me alone. My kids knowing that one of the things that mommy does is write. What about? Well, it depends. It doesn't matter.

Or does it?

There is a breast cancer study that is making the rounds in the news this week on post-traumatic stress disorder in breast cancer survivors. Most of us who have had the disease just shake our heads and laugh. You think? Yeah, there might be some stress involved in a disease like this one. You might have scanxiety and flashbacks and trouble with cancerversaries and do weird things like cry around teenage boys or picture every single person you see bald or get even more fidgety than normal. Especially because you know that you will never be told that you have achieved "remission," because that doesn't exist for your cancer, so all you can hope for is a long, passionate slow dance with NED.

Cancer will always be there, no matter how long we who have survived it are here. And I mean it will always be RIGHT HERE. It's a part of me now, like everything else that is a part of me. And I can honestly say that I have never had anything like PTSD from this.

You might find that surprising, considering all the keeping it real that I've done on this page. But really--when I hear other women talk about their constant fear of recurrence, their obsession with checking their breasts or chests or skin, their panic and sadness and the ways that their families are falling apart and their partners can't deal, I feel terrible for them. I get it, but I didn't feel it. And here's why:

This.

This blog, this public forum, these words. It's this that's saved me. Well, this, and having early stage disease. My death from cancer is entirely possible, but so far only theoretical. There is no way to overestimate the impact of that truth.

I have had some PTSD in my life, I realize now. That term didn't exist, but I had that after my car accident. I had night terrors for a long time and I changed my behavior and engaged in new rituals to help compartmentalize my fear. That didn't happen because of my temporary disability. In fact, that was relatively easy for me to understand, because I didn't know anyone who had been immobilized by a car accident, and my being in a wheelchair made the whole thing very public, and I couldn't hide it, so I had to just deal with it. However, the need to accept and place my own mortality at nine years old was a little harder to bear. The figures of authority who betrayed me, the fact that they wouldn't let me go to school, and the way life just seemed so impermanent now--that took some time to get over, because I never, ever talked about it. Once I said the words "It's not fair that I could have died and that I'm going to die," I slept peacefully at night. And epilepsy never gave me PTSD; that was something I told everyone about, something I had to fold into my life as I took medication every 8 hours, something that everyone was confronted with when I had a grand mal seizure in front of the entire sixth grade.

And through those experiences, I became a little bit more of myself. I have written a lot lately about issues of sexual abuse and harassment. I have eluded to things I will never write about. And now that I am 37 years old and decades have passed since I had some of those experiences, I realize what was so hard about them, besides the violation, the paranoia they brought on, the thousand little and big betrayals, the way I was forced to question myself and my body and my friends and my decisions. The hardest thing was that I couldn't tell anyone. Every time I tried--and believe me, I tried--the experience was downplayed, or other kids acted "jealous" of the attention I got, or I just felt oddly called out about it, so over time, I stopped talking. I changed things about myself, I avoided situations, I stopped trusting people, and I kept it to myself, and it kind of, well...haunted me.

Cancer has angered me, scared me, worried me and it has changed me in some ways. But in general, it has just become a part of me, and I don't feel altogether different. Breast cancer is an especially hard cancer to have from an emotional perspective, because it is talked about so often, women who don't have the disease live in fear of it, there are so MANY blogs and books and studies about how to deal with it, that it is entirely possible to believe that you are just experiencing this whole mess WRONG. There are a lot of people telling us how to feel, how to behave, and the ubiquity of breast cancer in our culture ironically makes it really hard to actually, you know, HAVE breast cancer. But then, something like KatyDidCancer comes along, and gives one woman the authority over her own experience, and to hell with what anyone else thinks. So maybe KatyDidCancer, or cancer did Katy, but there they are, living in harmony inside that one word.

How did this save me from the ravages of stress and fear and from the haunting? It saved me because cancer is absurd, and surreal, and the treatments are even more so, and writing about that made it real, made the memory last. When traumatic things happen and you don't tell the story, it just stays in your mind until you think maybe you made the whole thing up or maybe it wasn't true or maybe it wasn't so bad. I wrote it as it happened, and saved my sanity and the sanctity of my memories in the process.

So it was cathartic. And it made me feel useful--to hear how my words helped other cancer survivors, to understand that there are people I don't even know who have found some aspect of this story to be inspiring.

But there's the rub--that's it! It's in telling this story. Not the story of cancer. The story of Katy.

I have heard from teenage girls who were changed, and helped, by reading my posts about gender and sexuality. I have heard from men who never get emotional, telling me that they have wept at these words. I have had an impact on people, and that matters, even if it's some perv looking for bald lady porn who gets sent to a breast cancer blog and is forced to think about reality for a minute or two. That is an amazing feeling, as wonderful as learning that one of my daughter's classmates could not stop talking about poetry for an entire week after I visited the class for 35 minutes to do a poetry exercise, and she started asking her mother to get her poetry books at the library.

But none of that is what saved me.

I have been able to literally use cancer, to flip it, to make it work for me, so that I could talk about things I never thought anyone would care about, so that I could write words I always wanted to write--not just about me and my life, but about life with a Capital L. I have written a letter to my daughter and read it in front of a crowd of people, something I could not have imagined doing before cancer, or more aptly, before KatyDidCancer. I have written poems, or shared old poems that no one else had ever read. I have been brought back to myself, the writing part of myself, through this, and that is how Katy has been able to do cancer and stay Katy, without too much of an identity crisis.

Recently, I convinced my daughter to read the book Black Beauty. It was my mother's favorite childhood story. I really don't like horses, so I haven't had any interest in reading it to her. Gabe reads a few pages, and then she reads it herself. I spent about ten minutes in her bedroom the other night talking to her about the book. I showed her that it was published in 1927. I said that was the date THIS ACTUAL BOOK was published, not just the story. When her Meemaw read it, the book was already decades old. Her great-grandmother, who died when Lenny was 4 months old, was 8 years old in 1927, and that's how long that book had been in our family. That is why it was falling apart. She asked me what century that was (20th) and what century this was (21st) and I could see the wheels spinning as she thought about the nature of time. I told her to think about her grandmother reading that story when she was her age, and to realize it was not just the same story, but the same pages, the same smell, the same THING.



I know now that whether I have three years or thirty, 1,000 days or 100,000 days, that my story will still be there. And whether I am young or old when I am gone, someone who loved me, at least one person, because what more can you ask for, really, in this life?--someone among my children, my husband, my mom, my brother, my relatives, my friends, my ex-boyfriends, my co-workers and all those people who don't really know me but know of me through this medium--will say: Remember when Katy used to tell those stories? Remember those words? Remember how she wrote it all down so that one day we could say

Remember?

And some part of me will still be here.

The day after my diagnosis, 999 days ago, I wrote this:

I have never taken my health for granted. After having epilepsy and living through a terrible car accident as a child, I've always been happy with what my body could do. I can walk, drive, swim, deliver babies, and do all kinds of things that other people can't do. Whatever came at me as a kid, I dealt with it. I dealt with smaller things as an adult pretty well too: gallbladder surgery, infertility, cysts in my wrists. I've dodged a lot of bullets and led a happy, mostly healthy life.

I don't want to think my luck has run out. I hope you'll all see me out and about, lopsided, bald, what have you. I plan to try to be a cranky old lady because in a way, that's what I've always wanted. You know, just so the personality can fit the appearance.

It will help me to no end to write this damn blog, even if no one reads it. It's going to be a long road ahead and I'm going to be different at the end.

I was mostly right. I have absolutely been out, lopsided, bald, AND what have you. I am different, but not much different. My luck has not yet run out.

Over the last 37 years, I have lived two lives: as Katy the person, and Katy the body. Katy the body that other people have wanted, other people have hurt, other people have loved, Katy the body that didn't always work, that so often had to fight, that was always separate from Katy the person. And people who think they know me well can say that the relationship between the two Katys is what makes me who I am, and they will be mostly right. But the body will be taken away, and the person will change.

But this?

No one can take this away from me.

Day 988: For My Daughter on Her Seventh Birthday

This post was originally published at LiveChickenOnSix.

They say that seven is a lucky number. But lucky, exactly, for whom?

Seven is supposedly so many things: a years-long itch, a deadly sin, a sun, a son, a wonder of the world, a sister, a number of days, all of the seas on earth, a particularly impressive notion of heaven.

Seven is also the number of years it’s been since my first child, my daughter, was born.

She was born early, not by choice but rather necessity, to protect me and her from the high blood pressure in my veins that threatened us both. The whole thing started in the morning, and she was born a little before 6 pm, silently, as if she wanted to reconsider. One of the odd things about giving birth is that you remember everything, every last detail, and yet it all seems impossible, like it couldn’t have actually happened. When your child is a small person living fully in society, it’s hard to fathom how she used to live inside of you, how at one point in a sense you were one and the same.

What a world!

Because you and she are not the same. She is gymnastics, and you are basketball. She is arts and crafts, and you are poetry. She is obedience and you are rebellion. She is straight fine hair and you are thick and curly. She is competition and you are just too busy laughing in the background to care.

And now, she is seven.

Seven is an important age, somewhere between being a little kid and being a not so little kid. Do you remember being seven? I do. I remember resignedly waking up at midnight to take my epilepsy medication. I remember that my best friend was a boy, and everyone—well, mostly adults—teased us about being “boyfriend/girlfriend.” I remember my last year with a bowl cut before my hair turned curly. I remember being able to float on my back on the water for 30 minutes straight. I remember pancakes and peanut butter and crackers and watermelon boats. I remember jumping rope for hours without stopping and reading novels intended for people ten years older and lying in the hammock in my back yard.

What will my daughter remember of being seven?

Will she remember her surprising strength, the impressive little muscles in her belly and arms? Will she remember her “monochrome” phase, wearing the same color from top to bottom? Being student of the month? Winning the spelling bee? Playing with her brother—finally, finally!—peacefully and happily for hours on end? Refusing to eat? Colored pencils or sleds shaped like polar bears? Treating an eraser with a smiley face as if it’s a real life person? Playing gin with her mother on a Friday night? Any of these songs that we sing?

Well, she will now, because I wrote this.

What can we give our children but a name, some mannerisms, immeasurable love and memories they’d like to keep?

We can give them nothing else but a wish. And so we say, Happy Birthday.

And when I remember this happy 7th birthday, I will think about how I went to her classroom to do a little poetry project. She was so excited in theory and so shy in practice. And as everyone else was shouting and giving their answers to the age-old philosophical question of Why Popsicles? and it came time for her turn, I already knew the answer: Because 30 years have passed between your eyes and mine. I asked her, why did you choose that one? And she said, in front of the entire first grade:

Because I love you.

I will always remember you when you were seven, Lenny. Always—no matter how many more sevens I've got.

Day 985: Sacrifice

I'm not one of these martyr parents who likes to wax poetic about all the sacrifices I've made for my kids. Life with kids doesn't seem so entirely different from life without them, except there's more stuff you need to do for other people, and less time.

It didn't take parenthood to make me a multi-tasker. I'm good at that and always have been. I have an aversion to sitting still and to too many consecutive hours of sleep. So on days like yesterday, when I'm sneezing and hacking all over the place, it seems like a long shot to imagine calling in sick, even after I fell asleep last night at 8:30, before both of my kids, a feat so rare that they were both concerned that maybe aliens had taken over my body. But then they forecast this big snowstorm for today (ooh! 10 inches of snow! what an anomaly for this sunny clime...), and I decided that wouldn't be the best time to go out with my sick self to the office. After calling someone at work to find out the call-in number, because it's been so damn long since I've done it, I actually claimed a sick day.

And then, you know, I went to the gym at 5:45 this morning. And did laundry. And made chicken enchiladas and chocolate chip cookies from scratch. And cleaned. And walked to a store to get stuff for my daughter's upcoming birthday. Yeah, I took a half hour nap and I took a bath. But this is how moms DO sick days, right? Hell, there's shit that needs getting done.

There's always shit that needs getting done. Shit needed to get done during m-effing CHEMO, and let me tell you I DID that shit. On days when I could barely stand I was going to work and picking kids up from daycare and doing chores around the house and even having sex for chrissakes and then I would just go puke quietly or collapse from exhaustion or whatever. I did all that shit and I wasn't even eating FOOD, people. I would eat fistfuls of frosted flakes and raw spinach and call it a night.

Shit needed to get done after surgery too, when this lady couldn't move her goddamn ARM. I couldn't raise my arm, and three days after surgery I called in a telecommuting day and used my gimpy half-working right hand to type a goddamn ARTICLE, something that got published shortly thereafter. Shit needed to get done during radiation, when I was all burned and surviving on 45 minutes of sleep a night for months on end due to having hot flashes every 10 minutes all day and all night from chemo-induced menopause. I would take my bald self over to do some pilates and then cook a multi-course meal for my family. Shit needs to get done after childbirth, when you're worried you might lose your job, when people you love die, when there's weather.

So. I get shit done and rarely feel the need to claim it or talk about it--just like everyone else who knows what adulthood is.

I work full time, and I'm the main breadwinner in the sense that I make more money than my husband. He goes to the kiddy birthday parties and the park and leaves his job earlier than he should to see the kids. But I do almost all the cooking and cleaning. He's out there right now sledding with the kids and later he'll be shoveling all the snow, but you know what? I walked my snot-nosed coughing little behind literally BACKWARDS UPHILL THROUGH THE SNOW to pick my daughter up from the bus stop. I'm sick and the weather's challenging and the walk that would normally take 8 minutes took all of 11 so that made me feel kind of pathetic with the laziness.

It's all in a day, and you do it, and you figure someday everyone will look back and remember that you got shit done.

Because you're living a paltry-ass LIE, I tell you.

After carrying her backpack in the door and helping her out of the snowboots and wet pants and into dry clothes, after putting out the homemade cookies as a snack and sitting with her while she did her homework, I asked her if there was anything in her backpack, any notices from school or anything, that I should see. And then, my daughter, the girl who is currently a Student of the Month, gave me a stack of past homework, all 100% ok fine, and said, "here mom, you might want to see this one."

It was a little story packet called "The Tundra," a story and worksheets about the goddamn permafrost and ground squirrels and shit. Why does she want me to read this? I wondered. Oh wait, here it is. The last question in the packet: "Would you visit the tundra? Why or why not?" And do you know how this child answered that question? DO YOU?!

"No. My mom would sleep all day and we would have to eat sandwiches for days."