Day 803: An Ode to Anyway

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

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

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

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

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

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

Like that's nothing.

Because, you know, it is.

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

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

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

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

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

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

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

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

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

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

Here's to doing stuff anyway.

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

Day 730: 2 Years and Counting

As of today, I have officially survived breast cancer for two years. Of course, I have one of those pesky mammograms coming up in four days that could put me right back where I was at the beginning, so it seems somewhat premature to be writing this. Then, even if the scan is clear, I will have to wait another month before I can say that I’ve been cancer-free for two years, since my tumors were obviously alive and well on this date in 2010 when I was diagnosed. Regardless, two years ago, I didn’t know if I would make it to this date. I know I should be celebrating. So why do I feel so…conflicted?

Perhaps it’s because I still don’t know if I will be here two years from now. Perhaps it’s because the fact that I feel healthy and vital and alive means absolutely nothing to the specter of metastatic disease that follows breast cancer survivors like a cloud, especially in the first several years. I felt so healthy the day I was diagnosed, when I was told that my cancer and the rest of me had been enjoying a symbiotic relationship for three to five years. That’s when I learned that it was possible that I had cancer during both of my pregnancies, that cancer might even have been growing inside me on my wedding day. I tried to understand how something in my breasts was trying to kill me at the same time that those same breasts were sustaining another human life, my precious son, with their milk five times a day.

I tried to understand, and I’ve been trying for two years, but on this day I’m just going to throw up my hands. I will never understand why I had breast cancer. I will never understand if I am doing anything useful to prevent its return. I will never understand why I am still alive and others are not. I will also never understand why I have to live with the fear that my coveted status as a “survivor” could be temporary.

There are injustices with breast cancer that have nothing to do with the disease itself. Survivors of this disease are separated from each other, put into various camps that mask the truth of what it means to have a potentially fatal disease. Metastatic patients are marginalized, while those with early stage disease who have lived many years are turned into heroes when they had nothing on their side but modern medicine and luck. In our worst moments, women like me question whether it “counts” if you have breast cancer that doesn’t require chemotherapy. We have trouble banding together because the world only wants to see one face of breast cancer: the grateful one, smiling with a mouth painted in lipstick, scars hidden, pink ribbons in her full head of hair, showing cancer who’s boss.

It’s the pink in our culture that does this, not women who are dealing with breast cancer. It is not our fault that we live in a society so hell-bent on believing in its own promise of meritocracy that we turn illness into a battleground that can be fought and defeated if only you have the moxie. It is not our fault that we are steeped in a collective denial of suffering, in an intense need not to “lose.” Cancer in general, and breast cancer in particular, is different from other diseases in this sense.

When I had epilepsy, no one told me that I would stop having seizures if only I believed in myself. When I had an early-life identity crisis, wondering why I still felt like a “walking person” but my legs just wouldn’t cooperate, no one told me that I was braver than other kids who died in car accidents. When diabetics succumb to the disease, there is no social pressure to believe that they somehow weren’t trying as hard as others living with diabetes. If someone suffers a heart attack and lives, we breathe a collective sigh of relief. With so many other illnesses, we just stop and think, well, there but by the grace of God go I.

That is the only truth I have learned about breast cancer.

It could happen to you. It did happen to me. And not because I deserved it. I was young, and thin and active, I nursed my children, I didn’t drink. If a healthy lifestyle is something to take credit for, then I am left to wonder why cancer got me. I wonder how it is possible to be a size two and yet be told to “try to be skinny” to avoid recurrence. And so far I have survived, and I am of course thankful for that. But that did not happen because I deserved it.

Here’s the thing. We are too focused on doling out credit and blame. The ugly truth behind every “inspirational” story about a breast cancer survivor is the implication that we should be ashamed of those who didn’t make it, even when those people are us, potentially, years or months or days from now. We’ve brought shame into the damn thing.

When I was a freshman in high school, I confessed to my mom that I had heard that one of my friends’ boyfriends wasn’t allowed to come to my house because his parents thought my neighborhood was unsafe. As my mom would do, she calmly proceeded to completely tear me to shreds for the implication that I was ashamed of where I lived. And I realized that wasn’t it—I was ashamed of being friends with someone who would be ashamed of me. And we should be collectively ashamed of ourselves as a society for the way we have framed breast cancer and forced people dealing with a devastating diagnosis to constantly question the content of their character.

The thing is, no one wants to visit my neighborhood, this cancer-land. I am not supposed to even live here myself, not anymore. I am supposed to have moved far away, to be “done.” Regardless of the fact that most people do not visit oncologists every three months, the reality of a rare and aggressive type of breast cancer with a high rate of metastasis to the soft tissues of the body is supposed to be water under the bridge. After all, it’s been two whole years!

But I’m still hanging out here, on this bridge, close to tearing my short, sassy hair out as I think about my upcoming mammogram. I can tell that some (though thankfully, not all!) of my friends are sick to death of having to hear anything out of my mouth about cancer. I write about it here, so I don’t have to talk about it much in person. But I long for the days when illness or disease was just a part of the conversation, a part of understanding what it is like to be close to a person who has had something unlucky happen to her. I wish cancer wasn’t something to be celebrated or avoided, because for people like me, it is just something that is.

I have lived more than half of my years on earth without epilepsy affecting my daily life, and yet the specter of it remains. I think about it almost every day. I feel so grateful for all the friends and boyfriends of my youth who did not flinch over my epilepsy nor deny that it was there. They covered my eyes when strobe lights came on in the club. They waited with me on the ground when everyone else rode the roller-coaster. They reminded me to take my medication. But most of the time, they just accepted me and talked to me and tried to coerce me into bed and did all the normal things that a normal person deals with in her youth. And I recognize that all of those people who knew me then knew me as a person who had epilepsy, and so they will always think of me that way, and love me all the same. No one was waiting for me to get “better.”

Why is cancer so different than other things? It must be our fear that makes it so. No one questions why I still kick the leaves in the fall; no one says “but Katy! It’s been almost 28 years since you were in a wheelchair!” When I used to have a hard time finding pants that fit a skinny girl with a big behind, I would get frustrated with all of the sales associates who tried to sell me jeans to hide my ass. I don’t want to HIDE IT. I want to find something that FITS.

When we are having brunch with friends and Gabe proceeds to finish not only my leftovers, but those of our adult guests and even their children, the reason behind it is explained, laughed about, and understood. Oh, you know my husband with the gorilla arms, the guy who should be much taller than 5’9”? Why don’t you tell them why you eat like that, honey.

Well, a long time ago I was hungry. I didn’t have enough to eat for an extended period of time. It stunted my growth. So I can’t stand to see food wasted. Now give me that enchilada.

Gabe knows what our friends know: that was 25 years ago and yet, that was yesterday. Gabe knows what I know: That could be tomorrow. So it is with cancer. I don’t want to get over it. I want to figure out how to live with it. I think, so far, I’ve done a pretty damn good job.

I don’t believe that we ever really get over our losses, not the big ones, not the ones that remind us of the only sustaining universal truth. Our biggest losses remind us that we will die, that our lives are temporary, and that everything we think of as important is just a short glimmer of light. Those losses are folded into our sense of ourselves.

So let’s take the Big out of the Big C. One in two people—that’s right, half of you—will have cancer at some point in his life. Some will have it in old age. Others will deal with it as children or in the prime of their adult lives. Some will be done in by it, but some will not. You don’t know who you are. And you can’t take credit for being in that half or the other one.

When talking to a friend who was recently diagnosed with breast cancer, I said that the most frustrating thing to me about the notion of being brave and awesome and fighting the disease was this: Did anyone really believe that this cancer was chosen for me, in order for me to beat it? Does anyone really believe that there is something in me personally that can take the treatment, that can win? That my cells will be more cooperative because I’m a badass? There is no KatyDid cure for breast cancer. I took the same punishment as everyone else. I didn’t do it with any more or less dignity than they did. I hold on to the same desperate hope that it somehow worked.

Look, I’m not trying to be a wet blanket here. I have had so many people who supported me through this, who still talk to me after all I have done and all I have said here in this blog. I know why it’s hard for people to imagine that I might die from breast cancer. It’s hard to believe because I’m young, healthy, attractive, because my kids are little, because I look just like other people my age, because people can talk to me, because they like me. I can laugh about one of my ex-boyfriends telling me I’ll be fine, because, after all, only the good die young. And therefore I should live forever.

But cancer just doesn’t give a shit about any of that.

I will try my best. I will live well and try to be healthy. But as my recently diagnosed friend said, well, I’ve been living healthy and eating well and staying skinny for 36 years. And yet I still have breast cancer.

I will speak to women with metastatic disease and realize how badly they wish they were like me. I will also realize that at some point, most of them WERE like me. Most were not diagnosed at stage 4 initially. Surviving breast cancer for two years means just that. You have survived two years. Every two years that passes is an achievement that the normal population takes as a promise.

I feel so deeply implanted in the prime of my life. My body, my hormones, my brain, are all functioning at the level of a teenager, an 18 year old with her whole life ahead of her.

And yet.

At 18, when I first started taking birth control pills, I could not foresee breast cancer. At 5, I could not foresee epilepsy. At 8, I could not foresee the need to learn to walk again. Things happen that we cannot foresee nor understand. Things happen that are outside of our control. Things happen that are unfair.

And so we march on, aware of the nature of luck in our lives, the good and the bad. We are thankful for the very medicine that brought us to our knees. We are grateful for those who were willing to use their bodies as experiments so that ours would have a chance to thrive. We are angry that there is much more focus on awareness than research, as if being aware of something can make it go away.

We think about two years differently than you do. It’s such a gift, and yet such a fleeting instant. It’s more time than we could have imagined at the beginning, and yet not nearly enough. It’s the timeframe during which our children will learn 95% of everything they will ever need to know, and yet it is the time that they will never remember.

Just as I could not envision myself this way two years ago, I wonder, in the real sense of the word “wonder,” filled with trepidation, excitement, and mystery, what, if anything, I will be like two years from now. I don’t want to die, or to think about dying, when I look and feel so young. Not yet. Not in two years, or ten. I want to grow old. Just like you. I’m just less sure that I will make it. Because I had breast cancer. And you didn’t.

I’m ending with another poem. I wrote this in 2010, when I had breast cancer, but didn’t yet know it. Cancer could not teach me a truth that I already understood: This body, this life, they are just on loan. Whatever you’ve got, you’re just borrowing it, baby.

So be thankful for your years, and angry at the scourges that threaten them. Be real.

News

There is a world where news is made, where history occurred.

Kenyan hospitals imprison impoverished mothers.
We scrape leftover food from colorful plates.

1940s Leningrad saw cannibals hiding in the streets.
I braid our daughter’s hair.

Fifteen people were shot in this city last night.
Leaves fall softly onto our shoes.

Grief overtakes our friends, neighbors, the woman in the park.
Our infant son has eyes that change color in the light.

Authors debate evil: Hiroshima or prison camps? Knowing or not knowing?
We make love every night.

We read in search of understanding.
Why were we given this life, and when will it be taken away?

There are too many days, or too few, depending on the circumstances.

Day 697: Milestones

There was a time when the word "milestone" had a very specific and even ominous meaning for me. A few years ago, I used that word to refer to various types of cancer treatment, surgery, or cancer-related anniversaries. It's supposed to be a "milestone" when you finish surgery (more like a bump in the miles-long road, considering how many of us need to go right back and do that shit again), when you start chemo, change chemo, end chemo, finish burning yourself, grow your hair back, or whatever. I'm not sure any of that is really true, now that I'm not in the middle of it. Those were big things, but they also represented mostly sad things, and milestones don't need to be as such, even for people with cancer or other illnesses or disabilities. While the rest of my life absolutely continued while I was in active cancer treatment, no one outside of my innermost circle seemed to take note of the normal, every day milestones (save my birthdays, which were celebrated in large fashion, mostly because they signified that, well, I wasn't dead). It's worth noting how things continue to change and progress no matter what else is happening.

So today I wanted to give a shout out to some of the happier, more pedestrian milestones we've experienced over at my house recently:

Lenny, who incidentally recently turned six, got into an excellent gifted magnet school in the Chicago Public School system. At first I felt ambivalent about this, as my innate personality bristles at the intense separation and tracking we've instituted amongst children at such young ages. Then I thought...wait a second. There are only 30 kids in the city accepted into this school. If she can cut it through eighth grade, she is almost guaranteed a spot in a selective enrollment high school in 8 years (if those still exist). That saves us 12 years of tuition (a damn good thing if you own two houses). It also means that if Augie doesn't get into a magnet school for grades 1-8 (which is fine, because the local public school is good as well), all the tuition we've saved for her for 12 years and him for 8 years would enable us to send him to private high school if it came to that. Thanks, Lenny! You're better than the IRS at tax refund time!

Not to be outdone, on the same day that Lenny received her acceptance letter for this school, Augie up and decided to potty train himself. He had been doing well with wearing underwear, until it came time to poop, and he just wouldn't do it without a diaper. Then he changed his mind, and just like that, he was done. We can now officially retire the diaper bag. Now, I've never been a huge advocate of worrying about potty training in general. You don't see many ten year olds wandering around wearing diapers, so why argue with some stubborn little monster? The kid can barely sit still or contain himself for any reason. Why would I fight him about that? My mom tells me I just used to fly through the room all my life as a child, like a tiny little blur, and she didn't see the point in trying to make me sit still to use the bathroom or do anything else.

Now that my son has reached this milestone, I find the conversations strangely unnerving: "Look mom! I fit my penis in my underwear!" Or, peering in the toilet, he decides what kind of animal that shape looks like. Or, I give him a Snow White doll as his present for this achievement, and before he asks if he can sleep with her and takes all of her clothes off (she is, he decided, 20 years old, so I guess I can be glad he isn't interested in someone underage), he looks simultaneously happy and disappointed when he says: "That's Snow White. The Doll."

Jesus, mom, didn't I tell you I wanted Snow White? The GIRL? Like when I said I wanted a mountain from Santa, I wasn't talking about a toy mountain, woman.

I can't say I've had any milestones recently, really. What I see as an achievement might seem ridiculous to everyone else. For example, I made an appointment at the gym to have my measurements and body fat percentage assessed last week, and I was pleasantly surprised by the results. My weight and BMI are the same as 9 months ago, but I've reduced my body fat percentage to 17.2% down from 17.9%, and most of my other measurements have gotten smaller, with one notable exception. My thighs are an inch and a third bigger. Holy quads, Batman! No wonder I've had to buy new shorts.

Speaking of spinning, we had a huge milestone when Gabe accompanied me to the gym for a few classes on the bike. Gabe! In a gym with other people! Not just trying to do three pushups with me lying on his back (those Katy-ups are actually pretty impressive) or doing pullups on the monkeybars in the park. Those were some moments of joyous, ok not really, but at least sweaty and contentious, bonding. The consensus was that he hated it, and he wants to box instead, but he gained some appreciation for why I love it, and now he knows how fast I can sprint.

What else? Well, against all breast cancer advice, I've become one of those people with a signature winter and summer drink. Thus, I have just finished off my first enormous bottle of Tanqueray. By myself. It took me a while, but still. I was never much of a drinker before, and I don't think my nightcap ritual puts me in that category, but at some point I guess I figured, what's the use of trying?

Gabe and I are quietly approaching the 9th anniversary of our first date, so there's another milestone. Soon we'll celebrate a bunch of birthdays: Augie's, Gabe's, mine even. I'm pretty sure I'll keep getting older for a while, even though the following things are also true:

When my kids hit these milestones, I feel the normal surge of parental pride and happiness. I also think to myself, thank God. Every time they achieve something, every time they move a little further into their own futures, I think: See, I was here for that. If things take a turn with this damn cancer, at least they got to that point. They will be educated. They will use the bathroom by themselves. They will develop their own taste in women, and in men. They don't need me. Other parents get wistful, or cry, or feel useless, in these situations. I think YES! THEY DON'T NEED ME! THEY'LL BE FINE! If I have to go, that is. Let's hope I don't.

My body itself feels like a milestone. There's so much I can't do, and I'm not saying that to be defeatist. I can't do high-impact sports because my hips never grew in normally after my car accident and I never had physical therapy. My left pec is permanently burned and I still have chronic pain in the breast/chest area that can be so bad I wince and tears come to my eyes, and it comes out of nowhere, when my thoughts are far away. I still have to ask them to adjust the light/fan combination at the gym to dilute the strobe effect so I don't have to worry about having seizures. When my back hurts, or I get a bad headache or I suddenly have to go to the bathroom all the time because I have a cold, I worry that my cancer has spread. I am already in the near-panic zone awaiting my next mammogram in a month. I am living in a perpetual state of bated breath, crossing my fingers and hoping hoping hoping to get to 2 years NED, something most moms my age don't think about on a daily basis.

When I go on business trips, I ask for the pat down at the airport, and I realize that I will have to do that for the rest of my life, to avoid the extra radiation from the full-body scanner. On those same business trips, I'm known to do weird things. When it's 75 degrees at 6 pm in Kansas City, I think it's a good time to put on my bikini and go to the outdoor pool. And then I swim. By myself. In the rain. I go inside when I hear thunder. Men look at me funny. I realize that someone with a seizure disorder history should never swim alone.

I realize it. I realize that it might seem like loss to some people, to think of things that I cannot or should not do. All I can think is, look! I'm 36! I've had kids, and cancer, and epilepsy and all kinds of other things. And the girl 15 years younger than me is reading my assessment results in the gym, and after announcing my body fat percentage she says to me, here's where you are, and she points.

To the line that says "athlete."

Wait, are you talking about ME? Athlete, my ass! That's not a real milestone, I realize. It's vanity more than anything. Unless you have lost the ability to do just about everything with your body that a body was meant to do: eat, sleep, walk, talk, have sex, sweat, cry. Then it is a milestone. It all is--this body, those kids not needing me, the calendar turning into another month or year. This life is a milestone, and all of that cancer stuff was just a part of it.