Thursday, October 27, 2011

Day 539: No Particular Place to Go

I know I said earlier that I would dedicate my October blogs to talking about how much I hate breast cancer awareness month and why, that I would do my part to do some real education about the actual disease of breast cancer, rather than the hype. I guess I lied. I'm tired of the whole thing, tired of feeling like I have to explain that this is not the model cancer, that in fact greater strides have been made in other types of cancer, regardless of how much attention our boobs get. I'm tired of hearing about boobs. I'm tired of cute little articles encouraging women to do self exams by giving all the reasons that we all love the tatas, they bring us so much happiness, the boys love them, they always look amazing, they're a great conversation starter and all that bullshit. I'm tired of hearing other cancer survivors say it seems like we value breasts over other body parts, as evidenced by the popularity of supporting breast cancer research. My life is not a body part, and I don't now, nor did I really ever, give a shit if men like to look at my breasts. The idea that those comments, or the infamous, well, if you have to get a double mastectomy you could always get new awesome boobs!, is even a part of the conversation about breast cancer shows that we have the ability to be a collective society of idiots even when we have the best intentions.

So, enough of that for now, and if you ever want to know what I REALLY think about breast cancer awareness, we should talk offline. I know I am the queen of subtle.

Here's my issue, here's what getting me right now, this minute. I feel like I have turned into a Mexican jumping bean. I am having serious problems sitting still, concentrating on anything, being around other people. The last time I felt like this, I was a senior in high school, and I was going through a very rough time. Not a puppy-dog-love, teen-angst type of rough time. A seriously hard-core, life is a big pile of bullshit kind of rough time due to various situations. And I just couldn't sit still. I would sit in school and fidget, eyeing the clock, just dying to get the hell out of there. So, on a lot of occasions, that's exactly what I did. I ditched class all the time (sorry, mom, for the things you learn through this blog all these years later).

Sometimes I would ditch with other kids and engage in minor teenage hijinks, sharing cigarettes in the back of some boy's pickup truck or what have you. Other times, I left school for a reason, like when I would see Mr. S. was about to substitute for my class, and that disgusting little perv had already told my boyfriend and one of my ex-boyfriends that he had a thing for me, in very specific and descriptive terms. I remember getting caught for ditching by my dean, who was the hardest hard-core dean at the school, and she said, how is it that you missed 4 of X class, and only 1 of all your others? I still can't believe I had the balls, but I said, because Mr. S. was the sub, and every time I see him, I turn around and walk the other way and straight out the door. In one of the many moments that she saved my ass, my dean just looked at me and said fine. Just graduate from high school, Katy, and get out of here. That lady got me a job, watched my back in a thousand little ways. I owe her a serious debt of gratitude for my life turning out as well as it did.

Most of the time, though, I just ditched, by myself, because I felt like I was crawling out of my skin. I would just walk out the door and wander around. I wrote a poem about this once, about a time when the boy I would later date for many years found me walking by myself in the rain with no umbrella in the park during school hours. He had graduated, and was in college, and he asked me if he could interview me for his video project. I was shy, absurdly, since I wasn't really shy, and I agreed. He said he was asking everyone the same question and using the answers in a loop. The question was, what do you want to be when you grow up? And I paused a long time. I want to be happy, I said. Later he told me I was the best sound bite he ever recorded.

Could he have imagined how desperately I wanted to be happy right then? I felt that I was going nowhere, or more accurately that I was very smart and together and therefore should have been going somewhere but inevitably life was going to kick me in the ass and I would never make it. I felt this intangible sense of ennui, and it made me feel like someone else, and it was terrible. I wanted to be back in that place where you don't want to just escape from yourself, that place where you're content and life seems sweet. Of course, I did get out, and my life did change, I did walk away from whatever self I had been in high school and I did create a new one, and I can still remember how almost unbearably happy it made me when I realized my new life was really true.

I feel like that ridiculous teenager again right now. I pace around my office with the door closed. When I'm home, I wish I wasn't, and then I feel terribly guilty. I want to see people and talk to people but when I do, I am distracted by my thoughts and I can't concentrate. I would take walks or exercise all day long if I could, but I can't, and it would probably be a bad idea anyway. My breast hurts after lifting weights and it almost physically angers me, or my back hurts after spinning and I want to punch my fist through the wall. I feel like I'm always waiting, that I'd like to DO something, or go somewhere, but this is not high school anymore. I am doing what I always wanted to be doing, I've gone where I wanted to go. There's actually something to lose now, things really matter.

I would never walk away from my family, or even my job, or my house, or my friends. I know that, because I love all of those things. The life I have is a good one, one worth fighting for, so why do I just want to escape into the streets? Maybe it's because I miss the days when even the shit that mattered didn't matter that much. If I could change one thing about my youth, I would go back and ditch more often, and earlier in my high school career. I sure hope none of my young friends are reading this, and I hope my high school-teaching blog readers don't bust my chops for saying that. But I still contend that if I could get straight As in AP classes and not even show up, there was some lesson in there that I had already learned and I was actually doing ok, and the things that seemed so important just weren't.

Now I know that not just half, but maybe 80%, of life is just showing up, because that's what you need to do. Rules are important--they keep us sane, make us feel useful. And there's something to just valuing time spent doing a particular task. I mean, in college and grad school, I couldn't stand the thought of ditching. I was paying for that shit, so hell if I wasn't going to show up to class. And work is what enables you to live independently, so it's kind of important, and besides, hopefully you like what you do well enough. You can't ditch your family unless you're a moron, because they are what you always wanted. So what the fuck, I ask myself. What is my problem? And then I think, is this what they meant by coping with the new normal? Or is it something else, as Gabe suggested, is this all just a month-long preamble to next Tuesday?

Goddamn November 1, when I go in for my next mammogram and series of oncologist and surgeon appointments.

Maybe that's all it is. Maybe I will feel like Katy again come November 2. That's assuming I don't get bad news, of course. Don't say that, you're thinking to yourself. Well shit. The first time I had a mammogram, my entire life flipped upside down, so cut me some slack here. I'm not even a year and a half into this thing yet.

So I'm sure that's part of it, but I'm not sure that's all of it. I just feel like some kind of failure right now. I don't mean that literally--I know I'm not a failure in the large sense, but I feel like I'm failing at being Katy. I feel like I'm not living up to my potential as a worker, as a mother, as a friend. I don't even look like myself to myself. What's up with that crazy curly hair, who is that young boy in the picture there? Will the real Katy Jacob please stand up?

Maybe what I need is a good long project for my body. Sometimes I feel that I have two major conflicts in my life that cause me some degree of consternation. One is that I am living as an upper-middle-class parent, coming from a very different background than that, trying to figure out how to raise my kids not to be selfish and soft. The other is that I have this cerebral life, at work especially, when one of the most defining things about me is my relationship with my body. I think all day, while my body is telling me to just move all day. And just think--for all of those months I was doing cancer treatment and surgery, fighting through it. For almost a year prior to that I was nursing a baby, for the nine months prior to that I was pregnant, for a year before that I was trying to figure out why I couldn't get pregnant. That's years and years of tangible, physical goals. I can try to fill in the gaps, I can work my body to the bone to the extent that I can inside of my busy schedule, but it's not the same. Thinking to myself that I like what spinning has done for my booty or that I'm proud of my strong legs is not equal to nurturing and sustaining human life within myself or trying to cheat death. It's just not the same. It's not even in the same universe, in fact.

Oh don't worry, I'll get over it. I always do. I am not a fan of ennui, after all, not a fan of trying to find yourself, and I'm definitely not a fan of running away from anything. But my god when you think about this blink of an eye life, when you really think about it...well, you get restless. Last night we went to see Follies at the Shakespeare theater, a last minute outing since my mom was too sick to go, and we found it oddly depressing, though entertaining. Everyone was so bitter and felt that they had wasted their lives. How insane, I thought. Don't they know happiness is a choice? Most of life is not a choice, most of it is just shit that happens that you have to deal with, but happiness is, in fact, a choice. Why sing such a sad song? Gabe said later, god, I don't look forward to getting old. I looked at him in shock and said, well, I do. Consider the alternative. He tried to backtrack, but he knew what I was saying. That's what I do, more often than most 36 year olds could imagine. I consider the alternative. And then I get antsy, and maybe a little crazy. It won't last forever, I know, but right now, that's just how it is. And believe me, I am grateful to this blog for letting me get all that off my cute little perky scarred stupid pink cancer awareness chest. Now if only I could ditch work and race around the block a few times...

Tuesday, October 18, 2011

Day 530: Just Like a Pill

Hmm, that title is not quite right. I guess that just came to mind since I'm thinking about drugs today, and I recently asked Gabe to make me an itunes playlist of all my favorite workout jams from the last ten or so years and that song's in my head. We never buy music so that was a shitload of downloads, for sure. This was for our seven year anniversary, which just happened on Sunday. I was going to write a blog about that, about cancer and marriage, about what we've been through together, but then...I don't know, I just didn't feel like it. We went out, he surprised me by taking me to Cite, the restaurant on the top floor of Lake Point Towers, and in response to my last cancer poem, I guess I'm over the fear of heights thing for real. A year ago I wouldn't have wanted to sit by the window there. This time I just took a lot of pictures. Then we went to the theater, and maybe because we had split a bottle of Malbec, I was that lady with the husband who was falling asleep. And the show was hilarious. So what else, we had a great, warm, weekend with the kids, enjoyed each other the way married people do, I forgot to buy a card, he bought be beautiful flowers, I got him an 8 in one hammer tool (hey, he loved it), and I didn't have much time to say anything about it.

You know, we met and fell in love when we were 27, bought and sold a house together at 28, married at 29, had a kid at 30, had another one at 33, I got cancer at 34, and now we're 36 and seven years seems like what time and life are like in general: it's short, but also long. It's nothing in the scheme of things, but a whole lot of shit has happened. And at the end of the day, we're still that annoying couple that gives each other those looks and sometimes our friends say things to us like you guys act like a couple of teenagers, and then they walk away in disgust. So I guess we've done ok, gotten past that seven year itch, and we still have a good thing going, better than most. I'm just not sure cancer changed any of that very much. Now I know Gabe thinks I'm hot bald. Now we know what it's like to deal with life and death issues. Now we know that our daughter can give a preschool tutorial about chemo. We've done our best to live up to our vows, even though there are times when I know I'd like to throw Gabe under the proverbial bus (never the real one) and I'm sure he feels the same. So, for better or worse.

I'm writing the blog tonight because right now things are better, since boy have they been worse. A year ago today I walked out of the chemo infusion suite for what I hope to God is the last time. I did chemo for a little less than four months, and it seemed like four years. Some people say that chemo isn't so bad, others say radiation is worse. Well, chemo was hell twice over for me. I'll never know what was worse--the chemo itself or the other drugs, the Neulasta, the side effect meds, all of that crap. Together it was like some kind of cruel experiment on this small body. I'm mad at myself for weighing almost 120 pounds right now, since my goal is to stay at where I was pre-cancer: around 117. I have gained a decent amount of muscle from working out (plus, my muscles aren't being wasted by taxol anymore; my arms actually look kind of buff in those last two pictures!), but every time I get mad at myself about gaining a few pounds I remind myself how awful I felt at 110. At 113, I felt human, like I could almost be myself. During AC I dipped below that every time and watched in dismay as the scale went down. As every parent knows, the less you weigh, the more every pound counts. I had never known before what it was to eat just to stay alive, not for pleasure, not for the social aspect, but just because you know you have to in order to survive.

And I never knew it was possible for your body to forget how to sleep, or cry. I never knew you could feel so ungodly awful and look so relatively normal at the same time (bald, but normal). I never knew how normal life would be as it just kept rolling along, how everything else wouldn't really change that much, while your body was at war with itself, rejecting itself.

When I was a kid my mom would tell me that I was a trooper. I heard this all the time, as I dealt with epilepsy, dealt with the aftermath of my car accident. I asked once what that meant, and she said something like, a trooper is a soldier who does what he is told to do and doesn't complain. And she was right--I didn't ask many questions; I accepted my fate. I never complained. And that was probably the right thing to do at the time, because, what choices did I have? I was a trooper.

Well, forgive my french, but fuck that. I grew up at some point. Those early experiences taught me to wonder if doctors really knew what the hell was going on. I learned about my body, learned to trust it, to pay attention to what it was telling me when everyone else told me I was crazy. And then this shit happened, and let's face it, I knew it was happening, I knew all night on May 2nd while I stayed awake in bed listening to Gabe snore while I felt the newly-discovered thin hard line in my breast. But I didn't enlist in cancer. That's how they treat you, though--here are your marching orders. Take them, no matter what punishment we prescribe. Say thank you sir, may I have another? And look, I did what was asked of me, because again, I didn't have a lot of choices. I did two surgeries, 8 rounds of chemo, 33 rounds of radiation and a lot of bullshit in between. But I let them hear about it. There's a time to not complain, and there's a time to shout out to the rooftops. Don't tell me this is normal. Don't tell me menopause is the least of my problems. Don't dose me on that poison based on a 125 pound woman because that's what you think I should weigh. Don't tell me about your goddamn vacation and then inform me you don't have time to do my second lumpectomy. Stop giving me those bullshit side effect meds that are making me clinically insane (because, after all, many of them were actually anti-psychotics), don't tell me what to eat, don't tell me not to worry about my heart not working properly as it beats 125 times a minute while I'm lying down.

If ever I wondered if I was still the same hot-tempered stubborn girl I was as a child, chemo brought me back there. And maybe chemo saved my life. Who knows? In one sense, who cares? I had to do it, but I didn't have to like it, and I didn't have to buy in to the idea that there was a lot of beauty and hope involved in the experience. It sucked, and I thought it would never end.

But here I am, a year later, a year with no poison. I have avoided drugs like the plague, have been hesitant to take antihistamines in this horrible allergy season, stopped taking vitamins. I can hardly look at pudding or a bowl of fresh spinach. I'm writing this on day one of my ninth post-chemo period (TMI? too bad). I just don't feel like I even resemble that person I was a year ago, that woman who was so unbelievably glad to have offered her arm up to the poison for the last time, but who still had to go through radiation, still had to wait and see what, if any, chemo effects were permanent. I was still so deep in the middle of cancer, and now I'm not. Now, I just fear the known, rather than the unknown. I'm afraid of going back there. I'm afraid of mets. I'm afraid of dying.

But you know, I'm afraid of these things in the way that I used to be afraid of heights. You put me in the situation, and I'm afraid. Most of the time, though, I don't think about it. It's just there, lurking in the background, this strange passel of fears. I think about it, shrug, turn up the Ke$ha on my new playlist. I can still think of myself as a trooper, right? The one who's afraid, but does the thing she fears anyway? I'm just not quiet or very complacent about it, which can make me unpopular on this subject, and I know that. I guess I'm that guy who got drafted and asked all the other stoic guys what the hell are we doing here, this shouldn't be our fight, something is wrong with this picture, and then kept shooting so he wouldn't get killed himself. No wait, I can't be that guy, because I don't like cancer-battle metaphors. I guess I'm just me, that stubborn, pissed little pill of a person. A pill who's gone a year past her poison. It's something, right?

Thursday, October 13, 2011

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.

Sunday, October 9, 2011

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, 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.