Day 525: Pink This! October and Triple Negative Breast Cancer

I've decided that if I'm going to write any more blogs this month, it's going to be to provide a perspective that's different from the bombardment of pink that anyone fighting breast cancer confronts in October. Because, really, we are all very aware of breast cancer. And we are aware that others are aware of it, and yet, all of the marketing, the selling of pink products, and the hype has not fundamentally changed the reality of what it means to have breast cancer.

In another blog, I'll write about how the pink teddy bears obscure the grim reaper, how women who are dying of breast cancer or are coping with metastatic disease are often left out of the stories of hope and inspiration. Pink culture makes a hierarchy of breast cancer survivors, of which "survivor" is a crucial moniker, along with the "positive attitude" and "inspirational lives" that we are all supposed to be leading. I will write more about that later, and about how there is no bravery or inspiration inherent in this fight to save the life you didn't even know was in jeopardy. Today, I'm going to write a little bit about what it means to have triple negative breast cancer, to literally be the poor redheaded stepchild in this whole breast cancer family.

Statistics can be shocking things. As a person who does research for a living, I am fond of them, and yet I know that they can be manipulated, and that they might mean little to the individuals represented by the numbers. But I think they are quite worthwhile when trying to open up the conversation about breast cancer, a disease that people often lump (pun intended) into one group when it is in fact several diseases, maybe dozens.

Statistics have not been on my side with breast cancer. Only 2% of women with breast cancer are diagnosed under age 35. Check. Approximately 15% of breast cancers present as triple negative, meaning they are not receptive to estrogen, progesterone, or HER-2 (and meaning that there are no specific maintenance medications or specified treatments for those cancers). Check. About 10% of breast cancers are multifocal (more than one tumor present, originating from the index tumor). Check. And I'm sure there is some miniscule number of women who are diagnosed with breast cancer while lactating. Check.

Why am I bringing this up? Well, when I found out I was triple negative, it didn't mean much to me. As I learned that my cancer was the most aggressive kind of invasive ductal carcinoma, I tried to ignore the articles on the internet that told me "women with triple negative breast cancer often have poor prognosis." My medical team did not mention my triple negative status very much when describing my treatment plan. They didn't want to talk to me about prognosis at all. Once I knew I was stage one, that was considered very positive, especially when the second surgery cleared my margins. My gruff oncologist told me that I would need to be watched closely for a long time, because I was young and he expected me to live to be old, and therefore I had a long time for my cancer to come back.

That might be true for most breast cancers. But the reality is that there is a high incidence of recurrence, even for early stage cancer, for triple negatives, in the first three years. Likelihood of recurrence starts to fall off at that point and becomes almost nonexistent after eight years (estrogen positive cancers have been known to recur 15 or even 30 years later). I was also told that I should be extremely glad that I was not BRCA positive; everyone was pretty surprised about this, as there's a strong link between being triple negative and have the BRCA mutation, especially if you are diagnosed at a very young age. But here is another statistic. The American Cancer Society puts the five year survival rate for women with stage one cancers of all types at 88%. Mind you, that means that more than one in ten women with early stage breast cancer that did not spread to their lymph nodes will die from cancer within five years.

It gets more interesting, though. A recent study compared triple negative women with the BRCA mutation to those who did not have it. Of those who DID have the mutation, the probability of going five years without recurrence was 87%, and the probability of living five years was 73.3% (those numbers seem backwards to me, but it shows that recurrence is not a requirement for breast cancer to kill you). For those "lucky" triple negative women WITHOUT the gene, those percentages dropped to 52% and 53% respectively.

You read that right. Now, the study included women with all stages of cancer, not just early stage. Still, those statistics are telling me that, just like the movie title says, I have a 50-50 chance of making it to my 40th birthday due to the aggressive nature of the type of cancer I was unlucky enough to have. The statistics are also telling me that being BRCA negative is actually a bad thing for women with triple negative breast cancer. This implies that our cancers are feeding on something else entirely, and no one knows what it is. At stage one, almost everyone I encounter assumes I am fine now, I fought off the beast, I will live. But knowing what I have just told you, how would you like those odds?

For years, we have known that black women have a much worse mortality rate for breast cancer. It had been hypothesized that this was due to socioeconomic factors or access to healthcare and screenings. Today, many researchers believe that it is actually because black women are so much more likely to be triple-negative. Because triple negative cancers are often of the highest, most dangerous grade (surprisingly, two of my tumors were only grade 2 on the 1-3 scale, while my one non-invasive, DCIS tumor was grade 3) and are often also of the frightening "basal-like" cell type, they are less understood and much more insidious. They are likely to occur in young women, who are in turn unlikely to receive routine mammograms. They often are caught in late stage and are resistant to many treatments.

Moreover, when thinking about how breast cancers grow, most doctors look at an average. I was told my cancer had been growing for approximately 3-5 years. And yet it seemed to pop up out of nowhere. I have talked to triple negative women who have seen their cancers double in size in the month's time they were waiting for surgery. Many triple negative women can almost feel their tumors growing, but we are told that is impossible. I think it is entirely possible that I had cancer for a year at most, doctors be damned. We are also lumped in with other survivors when told how to manage our cancer. Yes, we can eat tofu, and no, we don't "have" to take tamoxifen, but we are still told to limit alcohol intake, exercise, and eat well. (Shouldn't everyone do those things without feeling like a guilty moment of excess will lead them to an early grave?). However, diet, drink, and overweight are risk factors for ESTROGEN POSITIVE breast cancer. There is evidence that extremely high BMI for post-menopausal women (BMI over 35) is a risk factor for triple negative breast cancer, but no real evidence of "lifestyle" factors that significantly affect triple negative disease exists. After all, I was nursing a baby, hanging out with a BMI around 19, when I was diagnosed.

Much of what everyone knows about breast cancer is largely irrelevant for triple negative cancers. Rumors and misinformation abound. A co-worker whom I recently met who is a 2-year triple negative breast cancer survivor suffering from a recent case of lymphedema was told by her doctor that only black women get the disease. A coworker of Gabe's was told by a friend it was good she was diagnosed now, not seven years ago when she dealt with her triple negative cancer, because her doctors told her to write her will and get her affairs in order.

How much pink goes towards figuring out what the hell is going on here? I was an active, skinny non-drinker nursing a baby when this thing came on. STOP focusing on supposed lifestyle factors, researchers. Something else is going on, something in the environment, or something related to pregnancy, or testosterone levels, but breast cancer is not about being an overweight inactive person. If the pill is a lifestyle factor, I am all for studying that one, since the link to triple negative seems highly relevant. But how much interest do we have as a society in discouraging women from taking the pill? How likely are we to start researching invasive birth control methods for men, or getting over our notion of spontaneity and firmly pushing barrier-based methods? This is a society that cannot deal with women and sexuality, to the point where the only cancer vaccine that has ever been developed is being denied preteen girls because we don't want to think they will go and have sex. Guess who will be getting her Gardisil in a few years? That's right, Lenny. I would rather protect you from sexually transmitted diseases and cancer AND teach you to force guys to use a condom AND enjoy sex when you are ready for it AND respect yourself. You could go your whole life without having sex or start having it at age 14 and I would still love you and want you to live.

It is frustrating to realize that it seems that even with estrogen-positive cancer, the most common type, breast cancer is an entirely different animal for those under 40. For triple negative, the reality is worse. You are forced into extensive, harsh chemotherapy regardless of your stage. Some studies show that that chemo will be extraordinarily effective on your tumors...about 40% of the time. The chance for recurrence is great and misunderstood, and the risk factors are unknown.

When someone asks me if I am in remission, I have no idea what to say. I recently agreed to do a short radio spot about being a breast cancer survivor. The woman interviewing me asked me if I thought I was cancer-free. I have no idea, I said. I have to assume so, until I know otherwise. One of the ROW coaches passed on information on a commercial audition for GE for cancer survivors. One of the first questions was, have you been in remission for at least a year? But really, no breast cancer is truly in remission. It is a type of cancer that can always return. Triple negative is less likely to do so, and as I said, almost entirely unlikely to recur if you make it 8 or 10 years out. In the meantime, you live with that IF, no matter what you do.

I have been very tired recently, peeing all the time, sluggish. I probably have a cold, and my period is due soon, so it could be that too. I might worry about being pregnant if I ever let Gabe anywhere near me without a condom or if I thought it was possible to still get pregnant, despite my so-far regular periods. But I am not your average 36 year old woman with average concerns anymore. I had this thing called triple negative breast cancer, so I have these symptoms and I worry that cancer has spread to my liver. Triple negative is much more likely to spread to the soft tissues, such as the liver, lungs, and brain, than to the bones--which is a terrible fate for women who find they have metastatic disease, and yet is much more treatable in the short term.

Everyone reading this knows I am not a support group person. That is just part of my nature, but another reason for it in this instance is that I find breast cancer groups to be very frustrating, since most of the advice is not relevant for me. I read somewhere that having triple negative breast cancer is like being seated at a separate table at a restaurant, watching other people eat steak while you live on bread and water. And of course it's terrible for anyone to have breast cancer. Early stage triple negative cancer is infinitely preferable to late-stage anything else, but it still makes you feel like an outsider, even in the "club" you never wanted to join.

It is hard knowing that much of what has been gained in understanding breast cancer will not benefit me, even if that sounds selfish. The ACT chemo I did was not designed for triple negative, though taxanes are considered a must, albeit a damn toxic one. No maintenance meds, no real restrictions on pregnancy or birth control method, really a lot of nothing, for us triple negatives. It is better to be free to live my life, in some ways, but daunting too, as I count down these days and see if my aggressive form of cancer decides to morph into something else. This 50-50 thing can make a woman tired.

These are the things I think about when I see pink advertisements for used cars or find the "do this for the cure" taglines everywhere. Here is the reality of decades of pink. According to the American Cancer Society, the mortality rate for women from breast cancer is about 25 per 100,000 today. The rate in 1930?

25 per 100,000.

While they might not get as much hype, mortality rates for women for cervical, uterine, and stomach cancer have reached under 5 per 100,000, down from the high 20s and 30s around the depression. What has all that pink money achieved? How aware are people really, how much do any of us know about breast cancer? I had no idea that triple negative breast cancer existed, and it took me a long time to understand what it meant even when I was diagnosed. Shortly after I showed up to work bald, a ballsy co-worker asked me what kind of breast cancer I had. What do you mean, I asked. Well, you know, there's the breast cancer where you will most likely be fine, and then there's the kind that's really bad, where you don't live very long. Which do you have?

I have the bad kind, jackass. Can I offer you a pink beer to thank you for your support?

Now don't get me wrong, there is one aspect of the pink that even this triple negative girl loves. It gives people who care about you a way to show you, when they are at a loss and don't know what to say. I learned recently that an old friend and colleague I haven't seen in years wears a Komen ribbon for me on racing days and thinks of me and my struggles when he runs. It's always touching for me to learn that, especially touching, somehow, when men feel that way. Someone lives far from you and can't help you out, make you a meal, or watch your kids. Pink gives them something of you to share. It's meaningful, and the love is important.

But there is nothing to love about breast cancer. October was always my favorite month, though it marked one of the darkest times in my life, since I was hit by a car on October 11, 1984. Our October in Chicago this year has been phenomenally beautiful, warm and sunny. But pink culture in October just makes me want to say, how aware are you that as you sit talking to me, I am concerned, rightfully so, that I might not live to see my son enter kindergarten? What pink is there to wash that fear away? It is not paranoia, or a bad attitude, that makes me feel this way. It is the reality of breast cancer, after the pink has been laid bare.

This photograph of Lenny and me was taken on New Years in 2010, about four months before I was diagnosed with triple negative breast cancer. Can you tell that I had cancer then? Where is the cancer in this picture? You might not be able to see it, but it was there all the same, trying its damnedest to do me in. The fact that you can't see it in me today does not mean that it isn't there; the fact that I feel very healthy most of the time does not mean that I am cancer-free. That is the reality of living with an aggressive form of breast cancer. You might call it a downer, I would call it a dose of the truth. So to all the women with breast cancer who are told they look amazing, that they are beautiful and wonderful and talented and smart, I would like to say this: Yes, you are. But this October, I know all too well that you would rather be ugly, lazy, stupid, and useless if it meant you wouldn't have breast cancer. So, this un-pink blog's for you.

Day 521: Running Away with the Circus

Today I did a very un-Katy-like thing. I skipped a Sunday afternoon of football to take the kids to the circus in the park. Apparently, several years ago a circus troupe (they still have those?) decided it was ridiculous how much money you had to pay to go to see the fancy-Vegas style circuses today (I did see Cirque du Soleil in Vegas, actually, and it was pretty awesome), so they decided they would bring the circus back to the people. We went to a park here on the south side and walked over to the big top through the playground. The whole thing cost under $50 for the four of us.

This isn't like me because I don't really like the circus. I went once as a kid to Ringling Brothers, and I was scared of the elephants, from what I remember. When I was in college, there was a boy who liked to juggle on our campus, and I decided with a friend of mine that jugglers were third on the list of most annoying people on the planet, after mimes and contortionists (it's her birthday today, so I think I will send her a picture of the contortionist juggler I was clapping for just a few hours ago). I've never understood this desire to run away and join the circus; it always seemed like it would be hot, and difficult, and dangerous, and, well, weird.

This is one of those reasons that people have children. They can show you why people do crazy things, they can remind you that joy can come first, before reason. The circus today was during Augie's naptime, and normally he would be crazy, losing it, because he was tired. Yesterday I had to take him out of a restaurant and sit with him in the car while Gabe and Lenny finished dinner because he was such a madman. Today, he just sat there (hands over ears since the music was loud) with his mouth open, saying woah. Like this was the single greatest thing he'd ever seen. Lenny barely moved. Gabe was cracking up in different parts. And, I confess, I loved it. There were no animals, but lots of juggling, and mostly just crazy acrobatics.

The entire time I kept thinking, when would you learn to do that? While other people are going to soccer practice, are you rigging up some tightrope in the alley and trying not to break your neck? Where would you hang the trapeze? Did you just break into school after hours and try some crazy moves on the rope in the gym? And how is it that people are so fundamentally different from me, the person who was born to be that mother who warns you you're going to put your eye out doing that, you're going to break your legs, be careful?

These folks in the circus had to have some things going for them in the beginning. The contortionist guy was born that way--you can't make that up or learn it, I don't think. But you have to decide what you want to do with it, you have to actually practice putting your body into ungodly positions, with no X-rated purpose in mind, but just to show yourself that you can. And these men and women have amazing balance and flexibility, both of which can be learned to some extent, though some people come by it naturally. They are gymnasts and dancers, which takes talent but also a lot of practice. So, one might think that you would take those skills, hone them, join a team in college, party on the weekends at the club. Or.

You might put on some funky tights and just lose your mind in some random park in front of little kids for not very much money and less fame. You might practice dangerous, useless tricks, that are all the more awesome because they are so useless, and you could have been doing something else that would have been more productive with your time.

Going to the circus today brought me back to the time (can I have a new nickname? I used to have a lot of them. I'm going to christen myself Higgins, because of the way I start to tell long, convoluted stories, just like the Magnum PI character) when I took the Amtrak to visit my best friend from college, who still lived in Minnesota even though she swore she would immediately move back to California upon graduation. This was in early 2000, when I was 24. The train originated somewhere on the east coast and was going to Seattle. This was before 9/11, before any kind of security, when there were still smoking cars on trains. I took Amtrak a lot those days, before I owned a car, when I wanted to visit friends who lived in nearby states. I was newly single, and those were important trips for me. I always had this idea that interesting things could happen on a train, good stories could be made. On that fateful day, I decided that if anything interesting would happen, it would happen in the smoking car, because that's where all the eccentrics would be hanging out.

Boy, was I right. And maybe I'll go to hell for saying this, being a cancer survivor and all, but what a shame that there is nothing to take the place of smoking cars, there's no other way to bring such a random assortment of people together. I sat there watching people chain-smoke, and I assessed the situation. There were some kids younger than me who were already completely drunk. There was one girl who kept yelling about Milwaukee, saying you need to represent your hometown, unless you're from a place like Chicago, which is cool enough that you don't need to represent. There was a young Latino kid, maybe 17, with two teardrop tattoos on his face. There was a middle aged guy with long green hair wearing a leather vest. There was a young fisherman, from somewhere in Massachusetts, with an accent so think that if he had learned to speak English yesterday it would have been easier to understand him.

I was so entertained just watching. Then, all of a sudden, Mr. green hair started telling his story. He was taking the train to the west coast to join the circus out there. He knew he had the job but didn't know what it would be like. He had a bag of tricks with him, and he started showing off, juggling, doing magic tricks, slights of hand. Then, he took out a bunch of swords, and as the train was still moving on the track at 80 miles an hour, he started to swallow them. The entire train car went silent, and we sat there with our mouths hanging open. I actually caught a picture of this guy swallowing a sword, and I have it somewhere. When he was done, he offered to show us how he could eat fire, and we all said, no, man, that's ok, probably not on the train, you know? Teardrop boy shook his head, said man, this is too good, I'm never flying again.

Two guys got in a fight at one point and were kicked off the train in the middle of Wisconsin. A young girl who was sadly drunk left at a rural stop with a man twice her age, someone she didn't know before the trip. I learned how to play some Polish card games with the workers in the dining car. And, I met a boy. A man, I guess, since he was 25. He was hanging out with the fisherman, and he tried to catch my eye in the smoking car but I was intrigued by his friend with the accent. He sat next to me, started telling me about himself, how he was in the marines and now he was a merchant shipman in Seattle but he hated to fly, it scared the shit out of him, so he was taking the train all the way from Cleveland. His brother owned the ship he worked on, and he was a slave driver, he worked 14 hours a day, and on and on. While he was telling me his life story I realized that he was actually a really good looking guy, so why not talk to him?

He's the reason I was playing the card games. He took me over to the dining car; we went with the fisherman and another young girl, who couldn't have been over 20. The guys were trying so hard to drunkenly flirt with us. The shipman leaned in to kiss me, and I thought, oh what the hell. So I made out with him for a while. He seemed so proud of himself, that afterwards he said "Hey! She kissed me!" And I will always remember how the young girl with us looked at me wisely, nodded her head, and said, "Good for you. Now he'll never forget you." She wouldn't let the poor fisherman near her. Good for you, I thought to myself. We all have our ways of being remembered.

So we fooled around on the train, this shipman and I, though I refused to go into the Amtrak bathroom with him (have you been in those bathrooms? yikes). I got the best souvenir I think I've ever had from that guy: he took one of the laminated safety cards with people in various positions of distress and instructions in case of disaster and wrote his name and numbers on it. And I do mean numbers: cell, home, work, fax number. This was 2000, so maybe in some strange world I would have been faxing him, but I still thought it was hilarious. He said he would call me; I gave him my number, even though I never did that. I knew I'd never see him again.

Sure, you're going to call me, you who has moved on to the next girl by the time the train gets from St. Paul to Minneapolis. I had a great weekend, laughed about my Amtrak adventures with my girlfriend, had a completely uneventful train ride back to Chicago, walked home from the el in a blizzard. I got in the door and the phone rang within the hour. It was the shipman, asking when he could come visit me. He could probably touch my shock through the phone. I knew that I didn't really like this guy, but this went on for a few months, him asking when he could come stay with me, calling me from the ship, looking into flights even though he was terrified of planes. I could've had a fun, long-distance, crazy little love story there, but I didn't really want one, not at that time. I just couldn't let him stay with me, not out of some higher vision of morality but because I thought he would get on my nerves if he stayed at my place. I told him he could come out if he at least made hotel reservations, because I didn't like the idea that I was essentially agreeing to sleep with him if he stayed with me. And, thus, I never actually saw him again, which was fine.

I have never had such a great travel experience, by any mode of transit, anywhere in the world. It was like we were on the Twin Peaks train. And that experience will always be wrapped up in the idea of the circus for me, in the picture of that middle-aged man performing tricks in the refurbished luggage car of an economy train for kids half his age who sat there speechless, forgetting all the rest of what brought them there, losing their Midwesterness, their Easternness, their bravado, their shyness, to watch him in wonder. He was going to take a job with the circus, but now we all knew the truth: he would have done it for nothing.

I thought about him today at the circus, thought about the first time he must have put the sword down his throat, what he must have thought, because let me tell you...those bodies! They were amazing. You could take your skills and try to get a college scholarship, or...you could do something that doesn't really mean anything, something that's just fun. You could take your body and make something of it, turn it into a spectacle. You could use your body to make people laugh, or clap, or gasp. And you might get paid for it, but the truth is you would do it for nothing, because you had always been doing it, ever since you were a little kid.

And let me tell you, I'm no circus performer. I'm a terrible gymnast. I'm not very flexible. I can't even do a cartwheel. But on my better days, sometimes I think that I have done something similar, I have turned my body into something that I want it to be, in defiance of itself. In a few days, it will be 27 years since I almost died in a car accident, since I could have been paralyzed, since I lost the ability to walk. In another week after that, it will be a year since I stopped poisoning myself with chemo. I've had epilepsy, I've had cancer, I've had a lot of things. My body has tried to shut down, tried to stop working, it's failed me--I said it, because it's true. So I've done what I could with it, turned it into something else.

A few months ago, I went into the gym at work to get my measurements taken, find out my BMI and body fat percentage. I was surprised that it wasn't the female gym manager, but the young male intern, doing the assessment. No matter, I took off my shirt, held the tape for him, was curious about the whole thing. He gave me serious explanations about everything and then told me my body fat percentage was 17.8%, which was very good for someone my age. Very good? I slapped him on the back. Are you kidding me? I've had two kids! I'm 35 years old! That's awesome! I didn't bother to add that I was only a few months away from taking some muscle-wasting poison that at one point made it hard for me to lift five pounds. I also didn't add that, against my own advice, I am often still harsh about my body, that I often don't like what I see, because at that moment I had forgotten all about what I didn't like, and I was reveling in the health of this strange little figure, this self.

Some days I would like to run away from myself, even though I love my life, my family, my house, even, sometimes, my work. Sometimes I would like to be a different me, play at starting over, see what else is out there. But I don't feel that way very often. Why not, you ask? Doesn't everyone feel that way? Well, I suppose so, I think it's a natural way to feel. But in some ways, I've already done that. I'm not tooting my own horn, because my life is just about as boring as they come. But I came by that boring the hard way, I claimed it, it's what I always wanted, because boring never came to me straight. Just like I came by this relatively athletic, healthy body the hard way.

While I looked at my kids, enraptured by the circus today, I started to hope the same thing for them. Not that they would suffer, and come out on the other side, because I don't ever want them to suffer. I started to hope for them that they would never be nurtured in their individuality. I want them to fight for it. There is nothing that you take so much pride in as the thing that would take everyone else by surprise if they knew it about you. That is the core of who you are--the things you are that are least expected. The only thing better is if you have the opportunity to take even yourself by surprise, to put one over on yourself. For some people, that opportunity arises when they hang by nothing but their necks from a trapeze. For me, it's enough to turn atrophy into muscle, to walk briskly, to comb my hair, to eat, sleep, be at peace with my cells. No need for me to run away with the circus--I've run away into this rebellious body, I've taken control of it, at least for now. It's not impressive, but I'll go out on the proverbial tightrope and say that it's enough.

Day 511: To Forgive and Forget

Right now I kind of wish I could give myself a swift kick in the ass. I'm really mad at myself, or maybe I'm just mad at cancer, or at doctors, but I'm mad. I went to water aerobics and was talking to a woman who was only using one arm during the workout. She told me she had broken it a while ago and was still on restrictive use. I said, yeah, it takes a while; it's been a long time since my surgery and sometimes I still can't do things with that arm. And then I looked at my bare left arm with the chlorinated water covering the bandage by my tricep, and I thought holy shit. What did I do?

I got a flu shot today, and when they asked me which arm, I thought about my right-handedness and said, the left, I guess. Somehow, some way, I forgot--I actually FORGOT, about that whole breast cancer thing. I forgot that I'm never supposed to get a shot on that side, not for the rest of my life. I forgot it could potentially cause lymphedema. I just wasn't thinking about cancer at all.

Now my arm is really throbbing and stinging and I'm paranoid about it. I'm pissed at myself, but also at my doctor's office to some extent, since they are all affiliated with Northwestern and I wish that showed up on my chart so I could be a regular person and forget something and not suffer physical injury for it. Couldn't the doctors keep tabs on that in this digital age? Every damn thing about me is in their computer system. Ugh. Mostly I'm pissed at cancer, and how I can still be doing normal things, and I can finally be in a place where I don't think about it most of the time, and it can come back to bite me in the ass with some potentially devastating consequences.

It reminds me of something else that pains me every time I think about it. Back when I had that terrible mastitis, I was desperate to figure out what caused it so it wouldn't happen again. It wasn't just because of the excruciating pain, or the high fever and intense body aches caused by the infection, that I wanted to avoid it. After having breast cancer, it was terrifying. To all of a sudden have a rock-like growth emerge in your breast, and then have that breast grow to twice its normal size and turn red and hot, was extremely disturbing for a woman just two months or so past cancer treatment. On top of that, mastitis is dangerous--if your fever gets too high or you let it go too long, you can end up in the hospital for days getting antiobiotics through an IV so the infection won't kill you. It's serious stuff.

I asked several times if it was caused by working out and was told absolutely not. Other women with similar issues said that it could be caused by anything, by getting a cut on your finger and having the infection travel to your breast. One doctor told me that catching a cold could cause it. That all seemed crazy to me, but what did I know? Finally, my surgeon asked me if I had been somewhere in the heat, said they don't really know what causes it. I was vexed by this. There had to be some reason for it. My surgeon was looking hard at me, and then she said, look. I think I know what it is. I see this all the time, but no one talks about it. We'll never know for sure, but it's probably due to sex.

I looked at her blankly, couldn't put it together. I said wait, I don't understand. How can that be related? She sighed, and said, the mouth carries lots of germs. It's probably from your husband kissing that breast. You don't have as much lymph on that side of your body, you just recently finished radiation, the scar leaves you vulnerable. It's not his fault, it doesn't mean he isn't taking care of himself, that's just how it is. Women go through this but they usually don't want to tell me about it. I thought holy shit, are you kidding me? Why didn't YOU tell ME? You'd think when a 34 year old comes in with breast cancer you could tell her at some point that in a moment of intimacy her husband could inadvertently cause her serious harm? Is it better for doctors to avoid awkward conversations or for him to not have to live with that guilt and me with that pain?

The irony is, we had just kind of gotten back to normal, even though I was still in menopause at the time, but my skin had healed beautifully from radiation and I was OK with being touched on that side again. You'd think we could enjoy each other without serious injury looming in our bedroom. And unfortunately, it still looms. Gabe forgets sometimes, and I have to slap his face away, remind him I do have another one, after all. What crap though, what a bad time to be reminded about cancer. Just like I hate being reminded of it when my crazy rough little son is climbing on me, going nuts, shouting about "motorcycles!" and "ooh, ooh, mommy, BIG DIGGER out in the street!" and "I'm a grumpy old troll, don't cross my bridge, be sad mommy!" and suddenly I am doubled over because of the pain in my chest or my breast from where he accidentally hit or kicked me.

So right now I'm just mad about breast cancer and the things I am supposed to remember to do, though I'm sure I'll be over it tomorrow. Don't get me wrong, there are many breast cancer precautions that I have completely ignored and I don't feel bad about that at all. I couldn't listen to most of the lymphedema-related ones, not with my life. I couldn't stop carrying my kids, couldn't stop being active or lifting weights on that side. I refused most of the side effect drugs for chemo, I figured out my own nutrition needs, I haven't turned into some macrobiotic vegan. But shit, I thought I'd be able to remember this--I don't get shots that often, and the flu shot's just once a year--it shouldn't be that hard.

I'm human, and I don't have a lot of vices, or really any vices, not any good ones, anyway. Forgetfulness can be forgiven, but it shouldn't have such potentially dire outcomes. Hopefully it won't turn into anything, but I just can't believe I forgot. Maybe that says something though--maybe that's some kind of progress. It hasn't even been 17 months since this all started. Maybe I shouldn't be mad at myself, but happy. Happy that I finally had that afternoon where cancer was so far away that I forgot it was there at all. It had to happen sometime, and timing was never my strong suit, so why not in the doctor's office while I roll up the sleeve of my shirt on the cancer side, thinking nothing other than "huh, nice job, I didn't even feel that."

In the meantime, before I forgive myself this trespass, I guess I just need to let it go and focus on what matters, like how curly my hair really is, and how there must be a hairstyling god somewhere that can make it look straight and chic, but I am not that powerful. Nope, not me. I'm just human, after all.

Day 508: The Beat Goes On

If this blog does anything for me, it shows that time changes things. A year ago today, I was released from the Critical Decisions Unit of the local trauma-center hospital after spending 36 hours there for chemo-related heart issues. That was one of the darkest times in my whole experience with cancer. I remember everything about that hospital stay as if it happened yesterday, from the conversation I had with Gabe about using my life insurance to pay for a nanny for the kids, to the kind doctor who attended to me and brought me some much-needed faith in the overall humanity of the medical community, to the realization of how immodest I had become in my new starring role in the Katy SciFi show, where I was bald, with fingernails painted black to try to stave off the chemo-rot, with heart monitors and patches all over my chest, reading a book about genocide in Rwanda and wondering if I was trading early stage cancer for a permanent heart condition.

And here I am now, with no more sense of the answer to my question than I had then. I have no idea how well my heart is working except to say it seems to be working just fine. And I have no idea if there is cancer in my body, though I can't imagine that there is because the concept seems too unreal, even to me, a person who has already faced the reality of multiple, insidious tumors growing inside me. I don't know, but I'm just assuming I'm all right. After these 500 days I've started to assume that I am actually a cancer survivor, that chemo didn't permanently alter the inner-workings of my heart, though I know it is too early to really say.

I've heard about breast cancer survivors who get multiple MUGAs all the time to assess the performance of their hearts, I've seen pictures of women going through AC chemo whose hearts were continuously monitored during the infusions. Not so for Katy. I never had any of that, just as I have never been offered follow-up blood tests. I guess this should disturb me, but in general, I just want to believe I'll make it. I left that hospital a year ago, ingested beta blockers every day for the remaining month that I did chemo, took myself off them, never followed up on my heart issue except to take Zyrtec when Taxol gave me heart palpitations, and have tried to not look back. My heart seems to work, but how do we ever really know what is going on inside of our bodies when we can't see it? The trouble is, you don't know until there's a problem. I felt wonderful until I found out I had cancer; hell, I physically felt just fine after I found out. You wake up in the morning and walk around and go about your day and just take it on faith that you can do these things, because, well, you are doing them. My heart must be working, because it hasn't stopped beating. I'd love to say the same about cancer--it must not be in my body, because I feel so opposite of what we assume it feels like to have cancer that it can't be true.

Cancer, heart conditions, epilepsy, many physical disabilities are ironically these insidious beasts that you often can't see. I have received so many comments in my life that start with the following statement that sometimes I feel that my goal in life should be to prove that appearances are deceiving: "But you don't look like someone who...":
has cancer; should be in a wheelchair; is so smart (a few guys have actually said that to me); recently had a baby; has seizures; does economic research; is in her thirties.

So who do I look like if not myself? How can anyone look like anyone else, and what are you really supposed to do with any of those statements, those supposed compliments that, perhaps unwittingly, deny some aspect of who you are? A year ago, Gabe said something to me like, you don't look like a sick person at all, you don't look like you have cancer or a heart condition. You just look like you, bald. Because you are just you, bald, doing cancer treatment. You're not sick. It's weird.

And he was right, it is weird, isn't it? It's weird how we can't get away from ourselves even when we feel like our selves have gotten away from us, that our bodies have betrayed us. Perhaps that's some kind of goal in and of itself, to be yourself completely, even in a state when you feel like someone else entirely. Because you don't have the option to be someone else, it's ok if you feel like you're faking it.

Today I was managing a conference at work, and I looked around the room, which was 90% men, and I was one of the youngest if not the youngest people there. And though I should have been thinking of other things, I found myself wondering, how did I get here? Am I really some kind of expert on payment systems? Is my work life a real thing, is this really me? People seem to like me and respect me in this environment, they seem to believe I know something, and perhaps I do, but then why do I feel like I'm just making it all up as I go?

In my role as moderator, I didn't know exactly what to say, so I spoke about the Fed's interest in payment system efficiency and integrity and payments governance. Then I said that I didn't think we should feel too bad that we didn't have all the answers. I related a story of how when I was walking into the Fed this morning, a very aggressive protester got up in my face asking me "Did you vote for the war? Huh? Did you?!" And I said to the audience at the conference, if there are folks who believe that the Federal Reserve, or me in particular, makes military policy, we shouldn't feel bad about being confused about who is in charge of something like payments. This got a lot of laughs, and some people even clapped. My strange confrontation in the rain made that little moment possible, and I couldn't have planned that.

A little later, one of the very few women in the room (hello? if we've made strides in equalizing fields where men and women work, I'd like to see the evidence) was talking to me about the event and then suddenly said, your hair is so cute. It's so daring. Huh? I asked, looking enviously at her very stylish short haircut. Mine is so average, she said. You're much more chic. I said thank you, but I thought, this is chic? This is sticking a barrette in my hair and tousling it after the shower because I have no clue what else to do and figuring, what the hell, it's a step up from bald so let's just walk out the door. And then I thought, this is how I know I know something about this--because I can just wing it, and it turns out ok anyway. I can use the story of what just happened right before I entered the building and it can sound relevant. I can be lazy about my hair, and somebody out there will think I spent money to get it to look like this. If I play it off well enough, enough folks will think I planned the whole thing, whatever it is, that my life will look purposeful and knowledgeable, which, in turn, might actually be true.

That's what I'm trying to do over here in general, I guess: be comfortable enough in my own skin that I can just wing it. Hell, maybe that's the only thing I've ever been able to do. I can sit down at the computer with no idea what I want to say, except that I want to comment on where I am today compared to where I was a year ago, and in the end it sounds like I had some kind of message, though I'm not sure exactly what it is.

It goes back to the old theme, the need to be able to see yourself as if you are outside of yourself. At the start of my diagnosis, when I was deep in the sorrow of losing my hair and potentially my breasts, a few people who were close to me told me that the characteristic that most defined me was not my hair, but my big black eyes. I didn't believe that then, and I don't necessarily believe it now, but perhaps I should take their word for it. Maybe the eyes show something: that weariness and acceptance from a year ago, the relative contentment of today. Back in those early cancer days, someone said that the "killer" thing about my eyes was not the way they looked but the way that they looked when they're looking at things, and that wasn't going to change. What a wonderful thing to say; what could I say in return? Well, I can offer that if eyes can show anything, it's just a reflection of what they see, of the world. So it's not me, but the world that I see and the life I've been able to live that is interesting, that is worth reflecting on. I like to think that I see the world as it is, that I'm comfortable enough with myself and this strange vessel and this convoluted mind that I can show my hand, reveal myself, without worrying about losing too much. So I guess I'm just writing this blog today to say that as long as it's still beating, I'll keep wearing my heart on my sleeve, or at least on my face. It's easier to see it there than inside of this strangely distorted chest.

Day 499: Fight Like a Girl

Wow; writing that blog title was strange. Today is the 500th day of knowing I had cancer; I started writing this blog the day after my diagnosis. I guess the one thing that can be said about cancer is that it's often a slow-moving beast, even when you have a fast-growing, aggressive type like mine. Cancer was growing in me for an estimated three to five years, and there I was, nurturing other human beings in and from my body, using my body to the best of my ability, living life. Other diseases can do you in a lot quicker, I suppose. I'm thinking about this because we went to see Contagion last night, a movie I swore I wouldn't go see, because of the mass death of children, focus on disease and treatment, and the fact that if I'm going to pay $60 for a movie since I need to pay the babysitter it had better be the best damn movie of my life.

But we ended up there anyway last night, since it was too cold to go to see a high school football game, our dorky date of choice for a Friday night. Can I just give a shout out to high school football games? When you're actually in high school, maybe it doesn't seem so great (actually, it did, when I was there), but this is one of those things that is just stopped in time and is still fundamentally awesome, even if you don't know a soul on the field. It's still $3 for a hotdog dinner, it's still beautiful in the fall and you don't even have to talk to your date because you're watching the game, and there's a band and halftime entertainment and just the people watching alone, especially all of the insufferable posturing of teenage boys, is worth the price of admission. We went last weekend and we could've walked the few miles to the game, but we were testing out our new 13 year old next door neighbor babysitter so we didn't leave early enough. We had a blast. As another aside, here's a shout out to the neighbor kids too. I'm in the office looking down into my yard and there's the 11 year old neighbor who is the quarterback on his little football team yelling things like "go straight down the middle Augie!" and patiently watching as my two year old son and five year old daughter run around like fools having the time of their lives. And it was his idea no less! I love it.

So the 11 year old's 13 year old sister watched the kids and we got a quick beer and then went to see a show. I was so prepared to hate it and be supremely disturbed. Granted, it's rough at the beginning, but it's so clinical and everything happens so fast that you don't even have a chance to feel sad about any of the individuals. There's actually one scene that's funny. But damn, they title the scenes just like this blog, in number of days, and by Day 100 or so, millions of people are dead. And though it's not at all related, since obviously cancer isn't contagious, I have to give the movie credit for making me think about things a little differently.

I remember very clearly when I reached 100 days. I was so deep into chemo, and it was a week or so before my 35th birthday. I don't mean this as any kind of slight to people who have cancer and don't do chemo for whatever reason, but sometimes I feel like if I hadn't had to do chemo, cancer would've been just a blip in my life. My way of thinking about cancer is directly linked to my experience with chemo. Yes, the fear was there, the grief and disbelief, that was all there pre-chemo. The surgery was shocking for so many reasons, especially since I had to do it again. Not knowing my BRCA status, my stage, yes it was all a nightmare. Radiation was no walk in the park. But I knew the moment I was diagnosed that I would need to do extensive chemo, and damn. Chemo--it did things to me I didn't know were possible to have happen to a living person. I know that sounds dramatic, but for this woman whose body rejects most drugs, it's the truth.

And yet. How much better it must have been for me than for people who tried the first chemotherapies as human experiments 30, 40 years ago. This was back when no one knew if chemo could be effective, when the doses were extreme and the protocol was to do it for an entire year regardless of your stage or type of cancer. I kept thinking about this as I was watching this film full of great actors, some of them pretending to be doctors or scientists searching for a vaccine for this disease that killed people almost before they even knew they were sick. This thing moved so fast, you hardly had a prayer. I loved the juxtaposition of the conspiracy theorists in the movie, who are convinced that the government is in bed with the pharmaceutical companies; some believe the disease is made up, others believe the purported cures are fake. And everyone here knows how I railed against chemo, how close I was to quitting, and how I questioned whether or not I was trading an early stage cancer for some kind of unknown lethal side effects, other cancers or heart disease down the line, etc. I was definitely a chemo-hater. I still am. I'm still glad I didn't take the side effect drugs, that I did acupuncture instead.

But I'm also glad I did chemo. Now that I know what I know, I can see that I came back to myself after all of that. I feel just as young, fit and healthy as I ever did. What does this mean? My chemo nurse told me at one point that the chemo was affecting me so severely that I at least should take heart and know it was working. Now I look at it like this: My body took that. What a punishment, what a beating. And now here I am, almost like it never happened. Score! When one character in the movie last night was talking about how no one knows what the side effects will be of the vaccine, I thought, no one gives a shit. You would take it anyway given the carnage. You would rail against the vaccine, and against chemo, and you would do it anyway, because you would have some evidence that it worked for some people before you. How brave those people must have been in the face of all those unknowns! How glad I am for them, so that I could have this one chance to fight this triple negative beast.

Ah, triple negative. The status of my cancer that makes me wish the internet didn't exist. I found some blog today, written by an MD who specializes in breast cancer, which stated that the test that they do to determine hormone receptive status for breast cancer is wrong 10-20% of the time. It is only wrong in one direction, apparently: some significant minority of women who are deemed to have estrogen negative cancer are actually estrogen positive, and yet they are denied the drugs like tamoxifen that could save their lives because they are never re-tested.

Boy, did I not need to read that. On the one hand, I am so grateful I don't have to take any more drugs, so glad that I don't have to have artificially-induced menopause anymore. But it makes you think. What if that is the reason that recurrence is so much higher for triple negative women, that the mortality rate is higher? Is it because they're not triple negative at all, they were just denied the right treatment?

It could make me angry, it could make me paranoid, it could at least make me ask for another test. And yet, I mostly just think, well, in reality, they are doing their best. Don't get me wrong. There is a lot of B.S. in the medical industry in this country, a lot of politics and way too much money wrapped up in it. There is a lot of sexism, a lot of infantilizing of grown women, there's a lot of shit, that's for sure. But most of the time, I think individual doctors and nurses are doing their best, knowing that they know nothing, even when they act like know-it-alls.

Contagion brought me to this thoughtful place, but I have to admit that the reason I get to be contemplative about chemo is that I'm not in the middle of it anymore. Back at day 100 I just thought oh please God, not again. Don't do that to me again. I couldn't get reflective about it when it was knocking me on my ass. But who was I talking to? I was the one who handed my damn arm over every two weeks. I was the one who kept going back.

I don't know what precipitated the desire to write this blog, but for the need to acknowledge that I actually think science is cool, and that it has aided my life in some very real ways. I also think it's important that science is no science--there's a lot of guesswork, a lot of mistakes, and maybe those of us who need to rely on it at some point in our lives just need to accept that.

When I dabbled with being an animal rights activist in high school (that didn't last long--I'm way too people-focused, and everyone knows I'm no pet person), I just couldn't get behind the whole no-testing-medicine on animals debate. I was taking Depakote twice a day, after all, the drug that poisoned my liver and that simultaneously allowed me to live a normal, seizure-free, life. Even after all the testing that had been done before me, that drug was toxic as hell (I don't understand why drugs like Depakote are prescribed so widely today, for all kinds of conditions, when they have such potentially devastating consequences). Of course it couldn't have been tested on humans first. It's hard to admit that, but it's true. Animals died, people suffered in the early stages of prescription, but, for me, it was worth it. It worked for me, amazingly, and I blended into the world fairly effortlessly. Wouldn't you want that for yourself, for your children? You could say otherwise, until you're confronted with some other reality, and then you're willing to try anything.

Well, almost anything. I wasn't willing to enter a clinical trial and try Avastin, which had no expected benefit for someone with my type and stage of cancer, but had unbelievably disturbing potential side effects. (In a controversial decision, the $100k a year drug was taken off the FDA's approved list for breast cancer treatment very soon after I started chemo). But no one would argue that chemo isn't toxic, especially adriamicin and cytoxan. Taxol's not much better. If something can destroy the nerves in your body, obliterate your ovaries and rot your fingernails right out of their beds, it's no joke. But if it can kill your cancer too? Well, it's debatable for some, but as I sit here feeling entirely like a healthy and happy 36 year old woman, it sure seems worth it.

I never thought I would say that. While I was in it, it was so horrible. Life is like that though--as they say, this too shall pass. The hope is that you will be there to look back on it, that the experience will pass on, not you. So far that's happened to me. I never thought I would say that I hope I am truly triple negative either, but I do hope the test was right. If it was, I can say that I did everything I could do (except for the fact that I've been eating too much good food recently, and I swore I would avoid fatty things, but now that I can eat without vomiting or having hot flashes I am just loving it. 118 pounds here I come!). If somehow the test was wrong, well shit, it's not good for me to be getting these periods now is it? But at some point you have to stop second-guessing and just accept it. We're all doing our best with the information available to us at the time. You can't get lost in the possibilities.

Way back at the beginning of my cancer diagnosis, I got a call from the mother of my best friend from high school (my friend sent me this shirt that I'm wearing in the pics, and another Fuck cancer one, which isn't my style, but now that I'm out of treatment I think this one is cute). She had had breast cancer herself. We talked for a bit and she said one of the most human things anyone said to me at that time: "I know you'll do your best, Katy." Not, I know you'll beat this, I know you're a fighter, I know you'll live, I know you'll kick cancer's ass. Just, I know you'll do your best. That's the only thing you can do, and I do think I have done it. Maybe they'll know better by the time Lenny's grown. Maybe fewer women will get breast cancer at that point. Maybe I'll even be around to find out for myself! And if not? I did my best.

Maybe that's what it means to fight like a girl. Don't expect to win, don't get cocky about it, don't shove your victories in anyone's face, don't think you got there on your own, and don't thump your scarred-up chest too early. Fight like a girl, and see what you can learn from the game. Just do your best.

Day 494: The Kiss and the Story

For the last eleven days, I have had no inspiration whatsoever to write this blog. Of course, I didn't really write a blog on September 1 either; I just wrote that poem and posted it and decided that would suffice. I started thinking that maybe there isn't anything left to say, so I could forget about it for a while and just lounge on the couch and watch some football, (see what the kids learn from me? Some kids might mimic their mom by playing dress-up, mine sprawl all over the couch during the game), cook some comfort food, and do other run of the mill things.

So why am I sitting here on a Monday night, contemplating writing one of my deepest blogs yet, while watching the game? Well, in part because I can't imagine NOT watching Monday night football if it's on, no matter what, but mostly for two important reasons.

One is that yesterday was the tenth anniversary of September 11. I am not going to attempt to connect the events of this blog with the events of that day. As I will discuss later, I don't take myself that seriously. But I do read the newspaper, and I read the coverage of the memorial services in New York, Washington, and other places. There were so many moving moments, but the one that got me the most was something a teenage boy had written for his dad, which went something like this: "I still miss you, dad. I wish you had been around to teach me how to drive, how to ask a girl out on a date. I hope that my brother and I became the kind of young men you would have wanted us to be."

There really isn't anything for me to add to that, and most people reading this will know why that makes me tear up, beyond just the given feelings of empathy. The second thing that happened is that an old friend and colleague posted the following link on Facebook about Dignity Therapy for the Dying (this is what I love about facebook, that you get to see what other people are thinking about, out of context, and yet it makes perfect sense and you remember what you like about those people, even when they literally live halfway around the world): http://www.npr.org/2011/09/12/140336146/for-the-dying-a-chance-to-rewrite-life

All of a sudden, these two passages converged for me. What is so poignant about all of the memorial statements for those who died on September 11? Well, one of them is the way that loved ones talk about the sudden nature of all of those deaths and the lack of closure. News coverage mentions a woman and her 23 year old sister, a man's 29 year old son, someone's 67 year old mother. But those are their ages stopped in time ten years ago. The present-tense nature of the way these things are portrayed is a brutal reminder that those people did not have the chance to age another ten years, and no one saw it coming.

While everyone who dies is always eternally placed at the age they reached before death, I think it's even more significant when you die suddenly or when you are the subject of unexpected news. That child will always be 29, that life will always be cut short. We conflate this and bring it into our everyday lives. I know that one of the reasons that the friends of my childhood and my youth are so affected by the story of my cancer is that I am literally cemented in their minds as the age I was when they knew me or saw me last. I know that I would feel the same way.

Recently, my mom brought me a few of my formal dresses from high school, thinking I could fit into them. My favorite dress was a vintage, rose-colored dress with a beautiful back that I bought for $35 on the north side somewhere. I couldn't believe I could fit into it. Haven't I had kids? Didn't my hips finally expand when I was 20? Didn't I grow an inch and a half in college? (Alas, the only thing stopping the dress from fitting comfortably is that my damn rib cage grew. It even fit better on my behind, I didn't even have to suck in my stomach, but that ribcage must've expanded somewhere down the line). I know that if my boyfriend at the time or someone else from that era saw this picture of me wearing it now, they would think, that's Katy! 17 years old, in 1992. Because I will always be Katy, 17 years old, in 1992, to some people. That's just how it is. The things you are go back to the way you are remembered.

But it doesn't have to be so static, and that's what's neat about life. If your only sibling dies, are you an only child? You might think you are, but you will never be an only child, because you and so many other people have all the memories of you being a sibling. And if you are alive in the world, you get to age, and people who see you as stopped in time somewhere in your past just have to deal with the fact that that image isn't real. But if you don't get that last glimpse, that closure, if you don't get to see that body or bury that person, time and memory can play all kinds of tricks.

This contrasts so completely with the subject of the other piece, which focuses on the actions of people who know they are dying, who have time to prepare. Normally, when the cheesy question of "what would you do if you knew you only had x amount of time to live" arises, no one gives the option: "I would sit down and write about my life so that I could be remembered and the whole thing would seem real." And yet that is probably the only really true answer that a person could give to that question.

What do these things have to do with me? Well, nothing, really. I don't think I'm dying, not right now, anyway, but having cancer does bring you that much closer to death, or at least to thinking about death. And it makes people say things to you like, well, you might have cancer, but you know you could get hit by a bus tomorrow, we could all die at any time. And you want to smack those people, because of course you know that, and actually you were hit by a car, thank you, and you did have a gun at your head, and you almost died from an allergic reaction to penicillin as a baby, AND you had cancer, so clearly none of these things precludes the others. But the difference is that cancer gives you time to think, to reflect. When my grandmother knew that she had a breast lump when she was 75, she let it go for over a year. She was too terrified of cancer to get it checked out, thinking that having cancer meant that she would die. Her doctor sighed and told her, no Marthagene, it's not like a heart attack. Cancer won't kill you just like that. You have to suffer first.

She suffered more than she needed to, and she also lived another 11 years and died of other causes. But I digress. These two pieces of media converged in my convoluted mind and I thought, isn't that what I'm doing here, isn't that what this blog is about? I have enough presence of mind to realize that even if triple negative breast cancer ultimately does me in, I am alive now and will be for a while. I have time to tell my story. I have always admitted that I write this blog in part as a love letter to my kids, so that they could know me if they miss out on the real, corporeal me. I have also stated that I am doing it to make this real, so that I know that all of these things really happened, because I wrote about them and somehow that makes them true. If not for this blog, morbid insomnia might be some kind of off-color joke, that head-shaving experience might be some kind of dream Gabe and I had in the basement of our old house, and this relatively normal life wouldn't seem quite so marvelous.

I wrote it, so it must be true. I told the story, so it must have happened. Telling our stories brings us back to that basic aspect of ourselves, that somewhat desperate innocence. I knew I needed to write this blog after meeting our new young next door neighbor, a boy who is about ten, who spent at least an hour telling our entire family all kinds of stories, mostly small (life is so detailed at that age!). I realized how important it must be to him to get those stories out, even to us. It was also important to him that we believed him, as if he expected that we wouldn't believe the story he was telling us--about himself, and his life.

And it's important for your life to seem real, to be true. Every once in a while Gabe tells me that I got some detail wrong in this blog. A few times I will reflect back and say, yeah, I guess that happened at a different time of day, that event actually happened before the other one, not after. Other times I look at him and wonder what world he is living in, where he clearly experiences everything in a fog, because I know, I just know, that the way I remember it is true. And I'm sure he feels the same way.

Why do we have this need to tell our crazy stories? Why the task of dying, as the article reveals, that forces us to take stock and come to terms with what we've done with our lives? Are we narcissistic enough to think anyone cares? I remember when I was fresh out of an extremely painful breakup, I said to a friend that the last thing I wanted was to become one of his stories, or even many of his stories. And she looked at me thoughtfully and said, why not? I know it hurts now, but what is wrong with that? That's what happens to all of us, and it's an honor to be someone's story.

Don't I have insightful friends! Of course, she was right. It is equally important to be an actual part of someone's life, but if for some reason that isn't possible, how wonderful to think that someone thinks of you when they could think of so many other things. Perhaps being a part of the story is the whole point. Maybe we need to take ourselves much less seriously, think of ourselves as just part of the play, and try to entertain the audience.

But who am I to give advice? Here I was a week or so ago, entertaining some teenagers at my house, though I was sure they should have had something better to do, and I wanted to laugh at myself as I played at giving advice, as if I know anything at all. At one point I found myself telling them not to take themselves too seriously, not to think that everything matters so desperately. But of course it does when you're 18, right, and death is so far away! Your life is such an important thing, your decisions matter, your love is the only one. And yet, experience does teach you a few things.

I have very few regrets in my life, since I have always laid my cards out on the table, even when it was embarrassing, even when it made me look weak. And different things that I've survived or experienced have taught me not to take today too much to heart. In the middle of wondering why parents in Chicago need to spend a few extra work weeks of time figuring out where to send a child to first grade, I thought, does it really matter? When I was out of school for months after my car accident, I had a tutor for one hour a week--that's it. All we did was math. I liked other subjects more and asked her about reading and social studies and science and she said, you are smart, you can read, you won't forget those things. I pressed her, and she said something along the lines of "It's fourth grade. It doesn't really matter. You'll be fine." And when I went back to school it was as if I had never left.

As I was talking to these kids and thinking about how deeply you feel everything when you are young, I was brought back to the time right before I left for college. I had started dating someone, even though I knew I would leave and move 400 miles away a month or so later. One day we were at his parents' house lying in bed and he asked me if I wanted to go out. No, I said, this is nice, let's stay here. And he said, no--do you want to go out with me? Do you want to be my girlfriend?

In a moment typical of my own innate romanticism, I responded, sure, but I have to go out with this other guy first.

At the end of the day, I dated that guy I had known for a hot minute after high school for more than six years. But who was this other guy, the one I had to go out with first? Well, he was a boy I had always liked as a friend, and he seemed to like me. He played football, we were really different, but we had a great time together and had been lab partners in chemistry. One day I was walking down the street and he drove by, got out of the car, and asked me out on a date in front of all of his friends, and all of my friends, who were all different people. How could I say no? High school was over, none of it seemed to matter anymore.

So we went out, ate some ice cream, saw a movie, and he thought it was funny, not annoying when I talked through the film and yelled at the screen (hey, that's how I grew up). He tried to hold my hand in the theater and that's how I learned you can't squirm out of hand-holding without being a total bitch so you should just do it, no matter who it is. He's trying to hold your hand, not feel you up. You have to let him. Then we went back to his house and talked on the porch for a long time. He drove me home and leaned in to kiss me, and I pulled away, because I felt I would be cheating on the other boy. As soon as I did that, I regretted it, but I didn't know how to fix it. A few days later he moved to New York and I never saw or spoke to him again.

Oh, how serious I thought it was, how I thought it mattered if I kissed him. Of course it didn't. I could have slept with him, and what would that really have done, how would that have changed the course of things in all of our lives? The great part is that wasn't on the agenda at all. This was one of those moments you have in your life where this sweet kid is telling you, hey I'm moving away, and one of the last things I want to do before I go is kiss you, and then you take yourself so seriously you don't even do it. If only we could protect ourselves from ourselves at those moments. Because we can't, we give vague unsolicited advice to kids who look at each other like, this lady's crazy.

But maybe the moral of the story is that the boy in that story won, because here I am writing about him almost 20 years later. Maybe being a part of the story is better than the kiss, though I contend we could have had the kiss and the story, and that is what we should all be trying for at the end of the day. Telling the story is important, but so is living the story before you get to tell it.

Now, do I think that way because I am a woman and I relate to people through stories, not actions? While I scream out after witnessing an incredible 99 yard touchdown run, I am simultaneously thinking about the ways that gender plays out in our very real lives. I am remembering a story I heard from a friend, a guy who had been in a relationship with the same man for many years. He started talking about a trip he had just taken with his sister, and telling this hilarious story about how they suddenly were attacked by vampire bats. I was just about on the floor laughing, as was my other friend, when I realized he had never heard this story before this telling. And I thought, right there, that is the difference between men and women. You get attacked by some damn vampire bats, and you forget to tell your boyfriend? I would have had to build my own phone in the wild to make sure I could tell that one right away. It's so bizarre, how else would you know it was real?


That's what I guess this blog has brought to me, selfishly. What a gift to be able to recognize your life and what it is and what it means, not later, not in hindsight, but while it's happening. What a gift to yourself and to anyone else who is a part of that story. But you can't do that if you are too wrapped up in yourself and the way things are supposed to be. That's why we have conversations like this in my house (and we always have, way before cancer) while we're watching movies on Netflix: OK Gabe, if there's ever a civil war and you haven't seen me in two years and the world has gone to hell and you see Natalie Portman living by herself in a godforsaken cabin, just sleep with her. You will probably both be dead within the week, and I wouldn't hold it against you anyway. Or, ok Gabe, if you could save the entire human race but the only thing you have to do is kiss a woman who isn't me, you had better kiss that woman or I will make sure to kill you myself. In fact if you could save just one person, or even stop one person from getting hit by a car, by kissing someone else, promise me you would do it, ok?

And this circuitous train of thought brings me back to the early days of my cancer diagnosis, when I told Gabe I had something to tell him, and he gave me a crestfallen look before he steeled himself to hear it. I hadn't really thought about asking "permission" to have an ex take half-naked pictures of me once I found out I had breast cancer, but he suggested I find out if Gabe cared. Instead of asking, I just told him. When Gabe heard this he sounded really relieved and said, oh, that's not what I was expecting you to say. I thought you were going to say you had slept with someone else or that you wanted to sleep with someone else.

And then I got pissed, because first of all, did he really think that was at the top of my mind in the middle of my terror and sadness and grief? Really, I was thinking about sex? And then I got even more angry, thinking about this supposed hall pass I seemed to be getting, since it didn't even seem like he would have been mad, just a little hurt, if I had cheated. Like I was Cancer Girl. I said, what, do I have one foot so deep in the grave that the normal rules don't apply, I don't even need to be a normal wife anymore? And he stumbled, trying to explain. No, that's not it, of course I want you to myself, I don't think of you as dying, I just think that it's your life, and you need to do what you need to do, whatever will help you deal with this.

I was still angry, and confused, by this reaction. I told a good friend about it and she said, huh. Can you imagine being in that place? Imagining a betrayal from the person you love most in the world and immediately seeing past it, forgiving it, because you just want that person to feel better and you don't know how to help her? Think of how much pain you must be in, how much love you must have, to feel like that.

And while I was marveling at the existence of my super-intelligent and thoughtful friends, I understood exactly what she was saying. In part she was saying, you need to flip it, Katy. You need to realize that the story you just told me isn't about you at all, it's about Gabe. And I would take it further and say that by saying what she said, the story was really about her. Or the story was about the man who took the photos, who asked if Gabe would think it was weird that we were in our bedroom with the door closed and I was taking off my clothes in front of someone who used to be my lover while my husband played downstairs with the kids? All I could say is no, since I didn't have the heart to say, he thinks it's weird that I have cancer, that he might be raising those kids by himself, and this is really just some meaningless small potatoes in comparison. I couldn't say that because it wasn't meaningless to him. He wasn't living with my cancer every day, he was living in that awkward moment.

So for one of many times in my life I learned how to see myself as someone else saw me. And like everything does, that brings me back to gender politics and gender identity. Under the guise of empowerment, we spend a lot of time telling girls not to care about what other people think, not to see themselves how other people see them. And yet, I feel that we are taking away one of girls' greatest strengths when we do that. My mom used to say "men think they're beautiful." That means that many men have a hyper-inflated view of themselves and their attractiveness, their appeal. But it means something else too--they don't get that we don't necessarily see them that way. They just don't see it because they have never been taught to care what we think. But women, on the other hand, think about this all the time. We receive so many thoughtless comments (thoughtless in the real sense--even if they are positive) about how we look, our sex appeal, that we learn to objectify ourselves, to sit outside of ourselves and look in. However, too often, we are too hard on ourselves, and we make up flaws that no one else can see. In my mind there is a happy medium. Why can't we encourage everyone to see themselves the way that other people ACTUALLY see them? To put themselves in the other's shoes, and look back inward?

But again, here I am playing at giving advice. I can't say I'm very good at what I have just described. I have had my moments though. I was able to do that when I lost my hair. I thought, realistically I believe, that people will see me bald and think, that's kind of strange looking. Or they will think, she has cancer. A few people might think it looks nice. A few people might appreciate it. But no matter what the reaction, most importantly, those people will think whatever they will and then never think about it again, because I am a stranger and they don't give a shit about me or my bald head, so why should I make such a big deal out of it myself? The knowledge that my "otherness" wasn't so interesting in this wide world made it easier, just like it made it easier to be in a wheelchair, or to have such pretty hair that people you have never seen before and will never see again reach out to grab it and ask if it is real. Those people were seeing one perspective of me, they weren't seeing ME.

To see that, you would need to read this blog, or tell a story about me, and you would need to see me in the flesh or talk to me. Because if you have both, you can appreciate all of the unseen possibilities, you can think about that stranger who did a double take and then smiled and winked at you, and you can wonder if he would go back to the office and tell a little story about the cute bald woman he saw on the street. The wink made it real, the story made it last. And then you're outside of yourself, without ever having to leave. That's what completes the picture right? That's it--the kiss, and the story. You need both.

Day 483: Cancer Poem #2

I've never done this before--written a poem and put it out there for folks to read the same day. Shit, I never show any poems to anyone, as evidenced by the fact that Gabe has been wondering what the hell I've been doing for the last several hours with a notebook and pen in my hand.

I am posting this because I was going to write a blog about how I realized on our way up north that I am no longer afraid of bridges. I couldn't figure out how to do that in a blog though, so I did this instead. A few of you out there might appreciate this; others might think I'm pretty strange; and others probably just don't like poetry, which is ok too.

Acrophobia

As a child, I loved heights—I liked to feel tall,
to lord my tiny body over the world that lay below me in miniature.
I can remember exactly when the fear came,
in a dream, when I was about ten.
My family rode in a car made of cardboard and kickplates,
and that car became an airplane, and that airplane broke apart
and I fell, slowly, with that viscous trudge that only happens in dreams.
I fell towards the water, reaching up, and I heard my mother scream to me.

I woke up shocked, to a new world
where I needed to be close to the ground.
Maybe that was the moment when it started,
my coming of age, with a crash, in a dream.
I learned to be cautious when I would have been curious,
the cliffs I would have peered over with fascination
had to suffice from a distance,
and things that were beneath me were just that.
I started to love cities for the wonders they offered when looking up.

But as all adults know, the things we fear are too often unavoidable.
I had to find ways to bear them, even in my beloved cities:
The glass elevators, high floors where meetings took place,
sewer grates, real airplanes and bridges—especially bridges.
These were things to get over, with a shudder, hands clenched.

Time kept passing, and I realized at some point that I had become
the miniature in photographs that other people took from up high.
Soon enough I became something else too.
No longer a passenger, I was the one in charge,
I was the mother driving the car over
the seemingly endless Green Bay Bridge
on the way to our peaceful vacations in the north woods.
I knew enough by then to keep it to myself, to stare straight ahead,
shut out everything but the path in front of me and get us home.

For six years I crossed that bridge, eight times a year, maybe a dozen.
Then we had a year without bridges,
when there seemed to be nothing to cross but the next cross to bear.
In that year, I aged ten, stared death in the face,
and found youth again, somehow intact.

I circled back to myself, but not before reaching up to my mother,
not from a car or an airplane but from a house,
a cozy brick structure that she swears she will never miss
since she cannot seem to shake the image of my face
as I left to discover what little I could of my fate
one early morning while she screamed out to me,
but silently, not in a dream.

The years since that dream have passed;
so it is with the seasons that lead us across the great bridge yet again,
towards the place where we go to get away from our regular lives.
Somehow, it’s my turn, as it’s always my turn, to drive us over.
I find myself singing along to the radio this time,
switching to the next song, correcting my grip for the wind,
passing on the left, pointing out the gorgeous bay,
excited by its expanse, telling the kids
if you didn’t know it was a lake you would think it was an ocean.
We are miles away before I realize what has happened.

Oh, if only there had been some other way to learn
that the distance between me and the water,
the space between the water and the car,
the gulf between the world we built and the world we couldn’t walk on
was not so insurmountable after all.

I had a dream that lasted twenty five years.
Though I cannot imagine what it would entail,
I do hope to have another.