Friday, May 4, 2012
Day 730: 2 Years and Counting
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.
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.
So be thankful for your years, and angry at the scourges that threaten them. Be real.
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.