Tuesday, August 17, 2010

Day 103:Pontificating Blog

One hundred days have come and gone, and I am sitting here pondering my self-inflicted mandate to write a pre-chemo blog that actually doesn’t have a lot to do with my cancer treatment. I get very reflective in these few pre-chemo days when I feel normal. But there’s a slight Flowers for Algernon effect wherein I feel good and have the knowledge of how that will be taken from me in short order. I would love to just run away and keep this healthy feeling. Right now, I can eat, drive, work a normal schedule, go to the gym (three times in a week! But do you know how hard it is to do a chest press or reverse fly after two breast surgeries?), sleep, play with the kids. Ironically, it’s during these feel-good times that my immunity is in the toilet. It starts to go back up right before chemo, so I have this tiny window where I feel like being out and about, and I can do it without worrying too much. And then, hello A/C! I can’t believe I will be done with it tomorrow. I’m starting to wish I had chosen cytoxan/taxotere, even though I would be really paranoid about the permanent hair loss. At least I would be done in four treatments. I will just be to the halfway point tomorrow after 4 a/cs. Ugh.

So what random things have I been thinking about? I’ve been contemplating this issue of cancer as identity. There is so much controversy around the term “cancer survivor.” Some people hate it, because they feel that it is overly dramatic and that it defines them. For others, it’s an important way to bring some acknowledgment and respect to what they’ve gone through. For me, I’m fine with it, but I’m equally fine with being considered a cancer patient or whatever is the term du jour. The name isn’t important to me. I had cancer no matter what you call it. And, literally, I have survived it, so far. I live with the understanding that in two or ten years I might not be a cancer survivor anymore, so sure, go ahead and call me one now. At some point I might be one of those people who valiantly “battled” the disease and lost. As an aside, that whole battle metaphor bugs me a lot more than the term survivor. Who am I battling? Katy’s bad cells? Can’t we just sign a treaty instead?

I guess it’s never been clear to me why the terms people use for such things can so easily offend. People say they don’t want to be defined by cancer. That’s one of the main reasons women wear wigs, and one of the reasons I thought I would want to wear one in public. And that is totally legitimate. Who needs pity, or overcompensated niceties, or awkward encounters, or any of the other reactions I’ve received when people look at me and see not only a bald woman but a woman with cancer? Well, the thing is, if people find out you have cancer, they will in part define you that way. That’s the truth. But how is that different than anything else?

I know I still talk a lot about hair in this blog, even though I don’t have any. It’s not because I’m hung up on it but rather because that’s the public manifestation of this disease, the one that brings the most reaction because it’s the most tangible. I’ve brought that on myself by not doing anything to hide my baldness, and I realize that. Some of the reactions have been incredibly meaningful, such as one that you see here. Gabe’s aunt buzzed her hair off in honor of me. Wow! I didn’t know what to say. I think I actually said, you didn’t have to do that, and I hope you don’t hate it! I was very touched. It had sure grown some by the time we took this photo.

Anyway, recently, I’ve had this hair epiphany, wherein I’ve learned that for me, being bald and having long red hair are almost the same thing in the way that those traits affect my interactions with people. For me, it's still hard, because I really did love my hair, and I still reach up sometimes to put it back, expecting it to be there. But baldness and red-hairness have some things in common. Why? Because both are different, noticeable, unique. People notice, and stare, and ask me weird questions, and, amazingly, I get compliments from strangers. In one of my very first blogs, if not the first one, I questioned how I could go from being the girl with long red hair to being the girl with the small bald head. But that’s exactly what has happened.

People have a way of defining us by what we look like, or by other physical aspects of ourselves, regardless of the circumstances. It’s unfortunate, but true. Again, how is that so different with cancer than anything else in life? When I was pregnant, I was just that—the big pregnant lady in the gym, at the conference, wherever. Pregnant ladies always lose a little of their own identities to the person sticking out of their bellies like a beach ball. When I was in a wheelchair, that’s what people saw--I was “handicapped.” When I had seizures, I was an epileptic. I know that that term is not acceptable any more, much the same as handicapped is not acceptable. Too defining, I guess. The terms have changed, but I don't think people have changed that much. There just might be more of an understanding that I should have been seen as a person with a disability, or a person with epilepsy, as long as I was a person first.

Of course, in truth, I was always that person, regardless of what anyone else said. Maybe being a woman has taught me an important lesson that helps me with these issues. I’ve always said that I think women spend way too much time and energy worrying what men think. After all, I have a masters degree in urban planning, not mind reading. Because, ultimately, who cares what they think? People are welcome to their thoughts, and I sure as hell can’t control what goes on in other people’s minds. Worrying about it won’t change anything. Women get upset if men are having inappropriate thoughts about them, and my response is, how do you know what their thoughts are? The only thing that matters is actions. If they don’t do anything inappropriate, who cares if they’re thinking unspeakable things? That’s their problem. I only care if someone makes it my problem.

I feel the same about all of this cancer identity stuff. Who cares if people see me as cancer first and Katy second? How would I ever know that’s what they’re thinking, and why would it matter if I did? It wouldn’t change the fact that I need to do this cancer bullshit. It’s just not my problem. My problem, or one of them, is having cancer, and having to do chemo. I might get a whole gamut of reactions, mostly to my obvious cancer-sign of baldness, but that doesn’t change the situation. And it wouldn’t change if people didn’t know either. My struggle would be the same, even if people couldn’t see it. That’s why changing the easy to remember “Y Me” breast cancer organization name to “Network of Strength” just makes me laugh first, and second, makes me wonder who thought that women feel strength through breast cancer. Mostly we feel tired. We think, um…”Why me?” That was the perfect name for it!

Why am I in this situation where I am forced, through the fact of my own personality, to see some of this experience in some kind of sociological fashion? Let’s revert back to hair as an example. These days, I receive compliments, and instead of just feeling grateful, which I do, I file my discomfort with them in the back of my mind while I simultaneously think about what these compliments mean about gender, sexuality, identity, etc. Why the discomfort? Anyone who has gone through cancer, especially cancer that required chemo for treatment, knows what I’m talking about. One, the very fact that I receive so many compliments on being bald proves that looks matter in how people treat you, even through cancer, regardless of what people say. Two, it’s hard as hell to receive any compliments when you have cancer. It’s wonderful and makes it easier to go through (so don’t stop giving them!) on the one hand. On the other, every time, I think in the back of my mind, hey, I’m not John Belushi. I never said that I wanted to leave a good looking corpse. Yesterday a guy on the street stopped me while I was wearing the dress in the pic above and said “You’re beautiful! Just beautiful.” And I said thank you and felt embarrassed but I also kind of wanted to cry. This whole cheating death issue is not supposed to happen until you are no longer considered conventionally attractive, and at that moment I was reminded of that. Like Gabe said after the last blog, I’d rather get to be decrepit and old.

So am I a cancer survivor? Sure. Am I a mom, a wife, a worker (for the man, no less), a white person, a member of generation X, a daughter, a size 2, a sister, friend, and a million other things that don’t have that much to do with what goes through my mind on any given occasion? Yes. People see me as those things, and I acknowledge that I am those things. And according to the state of Illinois, I’m still an epileptic, or a person with epilepsy. I still need the state’s permission to renew my driver’s license, and I will for the rest of my life. The state doesn’t care that I have gone half a lifetime without medication. If that fact isn’t defining, than what is? Epilepsy is still a part of me, decades after most, but not all, of the physical effects went away. By that token, this enlarged liver came from somewhere, and it wasn’t from my notoriously excessive drinking. To add another example, that car accident defined me. I mean, most people don’t have arthritis when they’re ten, or remember learning to walk, or keep those looks of revulsion from strangers tucked away in their brains. So what? I’ve still done what I wanted to do with my life. There are so many reasons that people get treated as less than they are, and it affects what they get to do, their opportunities, their happiness. Somehow that hasn't been the case for me. Maybe it's easy for me to say, let people call you whatever they will. Then just keep walking, if you’re able, and go where you need to go. Maybe it's been somehow easier for me to choose my battles and ignore the terminology.

In yesterday’s Tribune there was an editorial about an unspoken “club” of people who have cheated death, who are alive and shouldn’t be. The article was filled with stories of people who had been stabbed, left out at sea (or lake), walked away from accidents, etc. And of course the moral was, you will never be the same after this happens. You will appreciate life more, see it as a gift, and be a better person. Everyone with cancer is supposed to have this epiphany if they get to live. As you all know, I’m not a fan of that assumption. It’s not that I don’t value my life, but I just think the whole notion simplifies matters quite a bit. On the one hand, there is a reason that I think "cancer survivor" is an appropriate term. Let’s not lie. In the developed world, “only” 46% of people who get cancer die from it. Now, many of these people are also older, so there could be complicating factors. In developing countries, 75% of people who get cancer die. So surviving this is actually a big deal. Cancer tries pretty hard to kill you. That’s why it scares the shit out of people. But if you live, you’re not done. You spend the rest of your life wondering if every ache or pain is more cancer. This is fairly universal. At some point, you stop thinking about it every day, or so I’m told. The treatments are often long, and for some people they never end. But life keeps spinning. It doesn’t go back to normal, and yet, it never really stopped being normal.

I mean, I still argue with Gabe. People, including me, can still be petty and cranky. Cab drivers are still insane and I often wonder if I am going to live to get to my treatments when I get a particularly enraged cabbie driving me to Northwestern. Bizarre things still happen. This week, the kids were sick with stomach flu one after the other—of course not at the same time—so I couldn’t see them much. Right before Augie got sick, I bought new rugs to replace the $60 ones I bought when I was 22 and had my first apartment of my own. I figured it was time. Within three hours of putting them down, he had thrown up on one of them. One day a few weeks ago I came home from a walk to hear Lenny’s agonizing screams and cries. Holy shit, what happened? My eye! My eye! Did she poke her eye out? No, not quite, but almost.

With a breadstick.

You know what I’m saying?

More than cancer terminology, I get annoyed at the way cancer is used to exploit our society’s fear of suffering and death. There’s this new show on cable called The Big C, a series about a woman who finds out she has terminal cancer. Of course, she decides to change her life, start telling people what she really thinks, etc. I shouldn’t be so judgmental since I haven’t seen it, but this theme is tiring. You find out you only have a year to live! What would you change? Well shit, if you have cancer, you would probably spend a good portion of that year at the doctor’s office or hospital. You would be scared, and sad. You would try to stay normal, knowing you couldn’t. You would probably not have the opportunity to change your job, move, meet some hot new lover or eat the best food in the world. Hell, you might not be able to work, eat, have sex, or yell at people at all. Again, let’s not lie.

Moreover, why is there so much focus on damaged people, people who didn’t appreciate their lives, finding the truth through cancer? How about a movie or tv show about a person who was happy, and appreciative, and had good perspective…and got cancer anyway? What’s the story line? "Woman who used to get excited about stupid little things finds out she has cancer and still gets excited about stupid little things but in the back of her mind is sad about all the ones she might miss!" No one wants to see that. If anyone is enough of a glutton for punishment to go for that, just read this blog instead.

Perhaps my issue with this life epiphany thing is that cancer didn’t enable me to join the cheatin’ death club. That happened 25 years ago when I got hit by a car walking home from school. I don’t often mention this, but my life flashed before my eyes that day. People say that, but what does that really mean? Well, think about it. How long does it take to hit the sidewalk in a crumpled heap when you’ve been thrown by a sedan? I don’t know, 5 seconds? That’s it. Your life boils down to that. I had fast random memories—walking in a park, learning to play tennis. Even at 9 it seemed mundane, surreal, and impossible. That was my life? That’s IT?! Well, yes. I remember thinking: when I hit the sidewalk, I will be dead. I barely comprehended death and now it was happening to me.

Or not. I weighed 45 pounds at 9 years old and the difference between life-threatening injury, permanent injury, and death, was random and small. The impact of the car broke one hip, the impact of the sidewalk the other. A few inches away, or falling on the same hip, and I would have been paralyzed or would have never walked again. Another few inches and I would have died. The internal injuries I sustained left it touch and go there for a while. But I lived, and I went through all of what that meant. Disbelief, anger, night terrors for a year. I finally had to admit out loud that I was afraid of dying in order to get better and be able to sleep. I had to admit it wasn’t fair, that I was too young to die. I had to realize that death wasn’t an abstraction, but something that could, and ultimately would, happen to me.

So cancer can’t give me what I already have, it can’t teach me a lesson I learned long ago. Every fall is a new life for me, every pile of leaves I couldn’t jump in makes my heart well up. Is that a real term? Heart welling up? Because that’s how it feels. I doubt that I needed to renew my membership in this dubious club. I do know that I’d like to protect my kids from joining it , even by proxy, from getting too close to understanding death, at least for a while.

And that’s my long ponderous way of saying, that’s why I’ll go back and do my last a/c tomorrow. As I go through this, I am reminded of what I learned a little too early-- that life is always the same. Your kid is in agony, so you take the breadstick away and get her an icepack. You give her a kiss. Then you go in the kitchen where she can’t see you, turn your bald head to her, put your hand over your mouth, and laugh. And why not? In that crucial 5 seconds, that memory might be the one that turns up, out of nowhere. Who needs an epiphany? Life is interesting enough, just as it is.


  1. Beautiful, Katy, beautiful. Thank you for this blog.

    I love you. Kairos

  2. That breadstick thing may be the single best detail I've read in months. Would have been pretty good even in the hands of an inferior writer. Here, I laughed and cried when I got to it the second time.

  3. There was a story on NPR about the "slow-mo effect" when you think you're about to die. I don't remember what program though. Maybe I'll try to look it up at some point.

  4. Okay, you may not like the “battle” metaphor, so how may we give you credit for all of the crap that you have taken upon yourself in an effort to potentially reduce your risks of more cancer in the future? How may I, for absolutely selfish reasons, thank you from the bottom of my heart for battling sleep-deprivation, nausea, time away from your kids, and everything else, so that you will live to annoy me as a crotchety old lady 60 years from now? If not “fighter,” than what would you like me to put on the big gold star that I’m giving you for facing the medieval-like treatment options that were presented to you, as opposed to just running away screaming? How may we refer to this process through which you are bringing insight, intelligence, and even humor to yet ANOTHER health issue, on top of the car injuries AND the seizures, that you didn’t deserve by a long shot? Just because I believe that you’re going to make it through this with flying colors, doesn’t mean I don’t think you’re fighting tooth and nail for every inch that gets you there.

    BUT, if it bothers you that much, I won’t say it to your face. I’ll just put it into blog comments in a classic passive-aggressive fashion.

  5. Fi-eghter.
    fight. er.

    Okay, I think I have it out of my system. You may hereafter ignore my terminology and just keep walking.

  6. *cough*fighter*cough*

    Sorry. Done. Promise.