Monday, October 29, 2012

Day 858: Disaster Drills

I haven't had anything to post about in a while, and then I started thinking about something small, and I figured I could write about that, but then I wondered why anyone would be interested in reading about my small stuff. I mean, right now, there is this massively disastrous storm literally brewing over the eastern half of the country. Everything seems to be at a standstill: the election, the financial markets, travel, communication. It brings me back to that surreal day in 2000 when the power went out in the Loop. Obviously that wasn't a disaster and wasn't on a scale that even approaches this, but I remember so vividly how everyone walked around in a daze, wondering at the big city with no lights. I remember Mayor Daley's purple face on the news the next day, his rage so unfettered and real. I remember being one of the only people riding the El home, because I knew that the CTA had its own power supply and that I wouldn't be stranded on the train. I knew the buses would take forever with no streetlights. It is, oddly, one of my favorite memories of Chicago.

This storm, this Sandy, is obviously something else entirely. It is the thing everyone is talking about, the thing that matters for us right now. These are the types of disasters that keep everyone in rapt attention, including me. But there's something else I feel about them as well: fascination.

No, I'm not a weather geek. That's my daughter. She tells me every morning, after reading the weather page in the newspaper, about various random weather facts: what time the sun will rise (mom! it's going to rise at the exact same time that the bus leaves for school! isn't that cool? Um, sure, honey...), what the weather is like where various relatives and friends live, the records that have been set, the types of clouds.

It's hilarious to have a little meteorologist in the house, but that's not what gets me about these things.

I am completely fascinated by the human element; not just the suffering that I hope people don't have to endure in too great a measure, but the social aspect.

What does that mean? Well, some of you know that I have a masters degree in urban planning and policy. I've never actually planned urbans; my career has rather been very policy-based, but the whole notion of what happens with social norms in an extreme event, and how human beings manage large institutions, is fascinating to me. So they are evacuating large parts of Manhattan and other big cities on the east the same time that they are closing roads and shutting down all forms of transportation. Now I am not saying that those are bad decisions. I'm just SO CURIOUS about how everything will turn out, how folks will try to make order out of chaos if it comes down to that. Because usually, that is exactly what most people do. People WANT order. A few of the proverbial bad apples might loot, or cause mayhem, but for the most part people do band together and try to find their way out of the mess. And I sit there and wonder...why? And how?

I read all the books about major disasters--shipwrecks, factory fires, floods, you name it. The parts I find most interesting have to do with arcane things like codes, or the lack thereof, or how such events led to stronger labor laws, or tidbits about why Chicago is one of the only places in the world to have so many buildings made of blonde brick. Of course the human interest aspects touch me, and who could not feel pain in the face of such tragedy?

But something about what comes out of it is just almost thrilling to me, no matter how strange that sounds. I guess everyone reading this knows that I'm not a normal person by now anyway. I'm that girl who knows all about how payment systems failed following Hurricane Katrina, the one who went by herself, while pregnant, to see a movie about how black communities were decimated from a cultural standpoint (huge amounts of lost jazz photos, public squares that served as community centers and were never re-opened, musical communities that were lost forever) from the same event. I'm the one who chooses books about genocide for book club. There are reasons for this that come out of some very strange and specific aspects of my upbringing; the details are related to a rather involved family history as well, and it is too complicated to get into here. The point is that I seek out information about these kinds of hells on earth.

Hell, I do this even when it doesn't make sense for me to focus on the macabre. When I was in the hospital suffering from that damn chemo-related temporary heart condition, I got a phone call from a friend in Seattle. She might have been the only person who wasn't related to me who called me. And she wanted to let me know that she had seen a book in the store that made her think of me, and she was going to send it to me, because she thought it would make me feel better.

It was about reconciliation policies in Rwanda.

I shouldn't have been surprised. We used to go to the beach together and lay there sunbathing while reading books like that. And of course she was right--that was just what I needed. I feel a very strong desire to find out about things that are very disturbing, because I feel that we fail each other if we do not bring them to light.

I have not been shy about admitting to my social justice-orientation to the world. What's strange is how I think about it all the time--justice with a big J. Justice from a human rights perspective--that's really what I should have focused on in my career. In a way, I did, as financial justice is one part of the whole. But sometimes I look at the state of women in the world, or just in my own backyard, and I can't believe that I don't do something related to that for a living. I think about slavery--current-day slavery in addition to all the different past iterations of the same. I know more about every genocide that has ever happened than most sane people would care to even contemplate, and then I sit there at night and am haunted by thoughts like this:

What about all the genocides from throughout history that were truly successful? The ones that wiped populations out so completely that we don't even know that they ever existed?

And then I think, now, why would anyone want to read what I have to say about my life, which is so small? On the one hand, I write about the disturbing things that many people don't like to give voice to in relation to cancer, disability, sexuality, and even death. On the other, well, my life is pretty damn good. And even when it's hard, or has been hard, in some ways, I've been prepared for it. I've been giving myself disaster drills my whole life, wondering when the other shoe was going to drop and what I would replace it with, looking over my shoulder and wondering where the getaway car was, modifying things, cheating death.

And yet I have never been very serious, except maybe here. I'm just too inherently content, albeit pissed off, most of the time. So my mind is filled with this big stuff, and sometimes my life is filled with this small stuff.

What I was going to write about was this: This weekend, Gabe and I went to the wedding of his oldest friend. We went to lots of weddings about 7 years or so ago; we got married 8 years ago and were one of the first among our group of friends to do so. But now we're at the point where people are getting divorced, not married. So I don't often have an occasion to dress up too much. It took me a while to pick out a dress, even though I have a lot of cute ones.

Gabe helped me decide on a fairly slinky black number. I remember very well the last time I wore that dress. It was actually for the last wedding we attended--about two and a half years ago, exactly four days after my cancer diagnosis. Before the wedding, we took this picture that turned into one of Gabe's all-time favorite pictures of me. Later, we did a split-screen shot of that picture with one he took of me right after he bic'd my head, so that he could show me that I looked the same (I didn't see it then--though I do see it now). And I was just so lost, so grieved, so unsure of what my future would hold or if I would even have much of a future. I cried at the wedding, I cried after the wedding, I was sad about everything. I could hardly eat my chicken shwarma after we left the reception because I just couldn't talk to people. My husband held me while I cried in the restaurant, and the woman behind the counter pretended not to notice. The next day, I wrote what turned into what I still consider to be one of the saddest, most difficult-to-read blogs in the two and a half year history of this thing. It was my first Mother's Day post.

And then...this year, I put the dress on, didn't bother putting on a bra, planned to wear bare legs with my heels until one and a half of my toenails decided to finally fall off (two years post chemo! the gift that keeps on giving!), decided to put on fishnets instead, slicked back my hair, put long dangly earrings in my newly-pierced ears that haven't healed correctly, and let Gabe take the wheel for the long drive.

The ceremony was very simple and touching. I teared up a bit, thought about beginnings rather than endings, and smiled. We had time to kill before the reception. We went to a few shops in the suburban downtown, then went to the bookstore. We could have gone to a bar, I suppose, but I guess we're nerds. Then we headed over to the reception; Gabe knew some people, though I really didn't know anyone else.

And I didn't care.

Damn did we have a good time! So much food and drink, and new people to meet. And then...the dancing. Now. Gabe is one of those people who claps on one and three. He has NO rhythm. And while I DO have rhythm, I haven't been much of a dancer for years, for some reason I don't really understand myself. I used to go clubbing in high school (all ages night--a euphemism for underage girls welcome so grown men can try to get with them!) and in college, at least for my first year or so. At some point I became more self conscious; I didn't like getting any attention at clubs, and I didn't dance as much. For years I dated a man who danced with me in the kitchen of my apartment. We were too broke to go to the club, and that was more fun anyway. Gabe and I took some ballroom dance lessons when we first got married, and mostly it just made us frustrated.

So no one was as surprised as I was when we spent hours on the dance floor together, Gabe enthusiastically showing the world about his lack of rhythm and his love for me, and me dancing for real for a change. I laughed at him, he laughed at himself. He bumped into people and sometimes turned me the wrong way. We were one of those cheesy lovey dovey couples that annoys people most of the time, except at weddings, where it's ok.

That was it--I was going to write about that. About that moment I couldn't see two and a half years ago when I went to a wedding wearing a tight black dress, when I would be happy, when I would weigh a few pounds more because I wasn't too anxious and terrified to eat, when my hair was pointless, and I wasn't thinking about the death part of till death do us part and I could look back and know that when illness and suffering happened, we would make it through.

It just doesn't seem that important, though. Life is both a tragedy and a comedy. It is big and small. There is always something more joyous happening somewhere else, and something more horrifying. The horrifying is the only one worth worrying about, because it can provide some perspective and help us to help others through the world. And life is also, for me, a story.

Some wonderful stories are born of real tragedy. And you all know that I read the last line first, lest I don't make it to the end. This is why I sometimes don't know why I say things, because what I wanted to say has already been said, often so well that it isn't worth trying to beat:

the last lines of The Bridge of San Luis Rey by Thornton Wilder:

But soon we shall die and all memory of those five will have left the earth, and we ourselves shall be loved for a while and forgotten. But the love will have been enough; all those impulses of love return to the love that made them. Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.

Sunday, October 21, 2012

Day 850: What We Keep Inside

The other day, my daughter told me that she had a surprise for me from school. I assumed she had made me something in art class or that she wanted to show me a spelling test. Instead, she handed me a small pink bag with a pink ribbon pin and a small card inside of it. I asked her where that came from, and she told me her teacher gave it to her. I didn't get into it at the time, because she didn't seem like she wanted to elaborate. Today, after Gabe and I returned from a wonderful night away in Union Pier, Michigan, the following conversation ensued:

K: How did your teacher know I had cancer?
L: Because I told her.
K: Why did you tell her?
L: We watched a video about kids and adults who had cancer.
K: Wow. What did you think about kids having cancer?
L: (Shrugs). I don't know. I hadn't thought about that before the video.
K: Well it doesn't happen very often.So did your teacher ask you if you knew anyone with cancer?
L: No. When we were watching the video I was thinking about you.
K: OK, so then you told her?
L: I told her the next day. She gave me the surprise because she said she had bought presents for people in case there was anyone who had a family member with cancer.
K: That was very nice of her. Do you remember when you found out I had cancer?
L: No.
K: You don't remember anything about it?
L: I remember when you had surgery the first time. Meemaw stayed with us at our old house.
K: Were you worried about it?
L: Yes.
K: Why?
L: I didn't know what it would be like.
K: What what would be like? The surgery?
L: The whole thing.
K: Did it bother you?
L: No.
K: Nothing ever bothered you?
L: I remember when you didn't have hair. That bothered me. I liked it better when you had hair. It looks better.
K: Do you remember anything else?
L: I remember that we ordered food or other people cooked food for us a lot.
K: Right. Were you worried?
L: No.
K: I just ask because a lot of kids worry when their parent has cancer. Do you ever think about it?
L: No, I never think about it.
K: OK. you not like to talk about it?
L: I don't want to talk about it.
K: Fine. Time for dinner!

Oh, how they fib, how they hide their feelings from us in order to spare us, even at six years old. I know very well that Lenny remembers almost everything about the entire ordeal of my breast cancer. She brings up random memories all the time. She still sometimes uses cancer as a measure to remember when things happened: Oh, that happened before we knew you had cancer. That happened when you were bald. We didn't go to that party that time because you had cancer.

She was the four year old who at day 25 of radiation said this to me: "Mom! Only eight left!" Because she had been counting down backwards from 33 and she had never told us that. She even correctly removed the weekend dates from the equation.

Lenny refuses to cut her hair these days and I know why. She asks me all the time when I will grow my hair out. She tries to console Augie when he gets fixated on death by bringing up my cancer, and using it as an example for how bad things can happen that don't always kill you. She will even qualify those statements with things like "well at least not right away," no matter that we have NEVER discussed cancer returning with her.

Obviously she thinks about it. She waited a day after the video, cornered the teacher when she was alone, and told her about it. Obviously she worried. She cried, she was angry with me, she gave all of the kids at preschool tutorials about chemo. She talks about "the first surgery," knowing very well that there was a second one.

Lenny remembers everything. It's one of the things that makes her Lenny.

I have noticed since she has started first grade that she keeps things from us. She gets a bloody nose, is sent to the principal's office until it stops, and I find out about it from another kid's mom. Boys call her names or give her noogies and I find these things out eventually, but not right away. When she does tell me these things, she is honest about whether or not they bother her. But the rest is just a cloud of omitted information, the kind that she used to provide without being asked, in full detail. This is a part of growing up, and it doesn't bother me, considering how I swear to God I never told anybody anything that had much import--not my mom, not my closest friends--when I was small.

I remember that feeling, that desire to shield the world from the things that I knew were problems, in order to spare them the notion that my life was not so innocent after all. I knew that I was a child, and that children weren't supposed to think about such things or have anything bad happen to them that they would then think about, and I wanted to protect adults around me from the knowledge that that wasn't true. And now I have this child who has always hated conflict--ALWAYS--even when she was just a tiny kid. She gets scared at the most basic animated movies, not during the scary parts, but when people or animals do something that would get them in trouble. She's been this way since she was less than a year old--the thought of negative consequences must just hang over her like a cloud. It's funny, because no one ever got in trouble in our house until Augie was about two years old. I don't know where that came from, that extreme conflict-avoidance--but I do know that she uses it still.

I ask her these questions in a seemingly offhand way and she knows it's not offhand, that this is some serious shit. So she shrugs, feigns amnesia, tells me it's nothing.

That's ok. Lenny is fine, she has handled everything very well, and she will continue to tell people things about it when she needs to, as she did last week. She's little. She's my kid. I have no idea what else to tell her about it outside of what I told her in front of 300 other people that one day in May.(If you want to see the video--here it is!) This whole thing has made me realize that I really need to revisit my Cancer Mentors idea. If a four year old, or a six year old, can hide things so well, Lord knows what teenagers are thinking.

When it's a kid in your own family, you can only hope that she talks to you when she needs to, that you have made it clear that it's ok, and that some other adult with a little bit of distance has the wherewithal to bring it up. And then you can let it go, and not say what you wanted to say when she told you about that cancer video, because you know the sentiment would make her squirm:

Oh honey, I was thinking about you too. No matter where I am. No matter what.

Thursday, October 18, 2012

Day 847: 2 Years Post-Chemo

Two years ago, I did my last chemo treatment.


The end of chemo is a milestone that cannot be underestimated. For someone like me, who had such an absurd and difficult bout of suffering with chemo, the thought of doing it again is terrifying. The thought of that last day, that last treatment, was one of the only things that kept me going as my body experienced new and bizarre side effects and made me feel alien to myself. I had to continue to tell myself that mid-October would come, and I would be DONE. I had to tell myself that that would be it, that I would not have to do this again, no matter how unlikely that might have seemed at the time due to the aggressive nature of my specific disease.

Here's the thing. For many cancers, there are a variety of treatments, even if the dreaded recurrence happens. With breast cancer of all kinds, a stage IV diagnosis means a few things. One, it means about a 15% chance of surviving 5 years. Two, it means that for the rest of the time that you live--your entire life--you will be on chemo. For TNBC, it means that the rest of your life will be spent doing chemotherapy regimens that were really developed for other types of breast cancer, and that your chances for that five years are essentially zero; though that reality might be changing. But the bottom line is that Stage IV breast cancer means chemo forever.

Think about that. This fact is simply not true for many other cancers. There are women--the real warriors, a word I don't like to use when talking about breast cancer--who live with chemo for years and years. Many of the side effects for chemo for advanced breast cancer might not be readily apparent; women might hang onto their hair, for example, but their bodies take one hell of a beating.

I don't know how they do it. I have nothing but admiration and respect for people who do this, and I don't say that with any kind of pity or paternalism.

I can say that I don't know how they do it, but that is kind of a lie. I know that they do it with resignation and hope, two things that we think are mutually exclusive but are actually very closely linked. And moreover, I DO know WHY they do it.

You do these things, because no one knows what else to do for you. You do these things because your desire to live is stronger than your desire to feel what "normal" people consider to be "healthy." You change your definitions, your mindset, and your day to day reality and you put up with things that would bring other people to their knees. You do this because you don't have a whole hell of a lot of options.

Cancer is hard. No one feels the same after a cancer diagnosis. Surgery is rough, painful, disfiguring. Radiation is no walk in the park. Maintenance medications can make you feel like a zombie. But in my heart, I find it hard to relate to people who have had cancer and didn't have to go through chemo. I envy those with chemo regimens that are on the "lighter" side, and those who didn't have a tough time with it. It's stupid, and it's irrational, but it's real--these feelings are real. I know the fears that all cancer survivors experience, I appreciate their perspective, and I have more in common with them on this one subject, this one way of walking through the world, than I do with most other people I know. I can see the look in their eyes and glimpse with them that vision of the future they aren't sure they are going to have, even one year later, just as I can see it in my own eyes that are reflected back into the camera lens almost exactly a year after chemo right here:

But my experience with cancer was so linked to my experience with chemo that I cannot separate the two. Chemo took my hair; it made me sick in ways that I didn't know were possible when cancer never made me feel sick at all. Chemo threw me into menopause, made me weak, made me lose weight. Chemo put me into the hospital with a temporary heart condition. Chemo made it impossible for me to sweat, sleep, or cry. Chemo gave me hemorrhoids, bone pain, stomach pains so intense I could barely walk. Chemo made it obvious that I had cancer; it brought me closer to death than cancer ever had. I dreaded each treatment, and yet felt absolutely devastated when I was sent home at my sixth treatment because my numbers were too low. Chemo taught me, or rather reminded me, that not everything in life is a question of mind over matter. Sometimes, matter matters. All your mind can do is force you to keep going, to hand your arm over, to stubbornly do things as you did them before, to walk around bald and glare at those who might shun you or pity you or even compliment you.

Chemo taught me to wait, to wish for time to speed up even as I clung to every day with an intense fear that I would not have many others to cling to; chemo gave me a goal, which was to make it until October 13, which turned into October 18 due to the WBC issue. I still had months of treatment left after chemo, but I was hardly even concerned with that, as I felt I had jumped the biggest hurdle.

My chemo nurse told me on that last day: You did it. This is never easy. This is very, very hard for everyone. I can tell you that after years of doing this, this regimen did things to you that I have never seen before, and I know how much you wanted to quit. But you did it. It was a lot of suffering for a short period of time so that you can live a lot longer. I don't think you will have to do this again. Go have some champagne. Visit me sometime. And...good luck.

Amen, sister.

Here's to hoping that October 18 will always mean the same thing to me: the last day I poisoned myself with toxic chemotherapy. I don't ever want it to mean the last time, as in the time before this one. Chemo for stage one cancer lasted for four months. Chemo for stage four cancer would last for forever. So, I celebrate this anniversary just two days after I celebrate my wedding anniversary, and I can tell myself, my husband, and my family this:

I am hoping for many more years to see how we've all grown and changed. I tried my best to have the chance to define what kind of forever I would get to celebrate. Let's hang on to what we've got.

Tuesday, October 9, 2012

Day 838: What is That Like?

So, it's still October. That means that it's still the time of year when people should be preparing their inappropriate Halloween costumes and finding yet another way to make trick or treating less fun for kids, but in addition they are buying pink and talking about how important it is to save the boobies.

Those of us who have at least temporarily survived breast cancer who have a voice in the universe, no matter how small, use that opportunity for different purposes. I'm going to use mine this October to continue hammering some things in about what it is really like to have breast cancer affect your life, your likelihood of getting old, and everything else. This time, my message will be brief.

Here are a few small, everyday examples of what it means to be a young breast cancer survivor, from a few different perspectives:

Your mom obsessively reads your blog posts, probably clicking several times a day if nothing new shows up, because she knows that is the only way that she is going to learn what you are really thinking. She has been on hormone replacements for menopause for over twelve years, and yet it is YOU who had breast cancer. She would like to trade places, but she can't. She often asks how you are doing and sounds a little bit panicked each time. She is completely convinced that because you had stage one cancer and did extensive chemotherapy, that your cancer will never return. She hates when you remind her how easily it could return, and always asks the same thing when you tell her about another woman with early stage disease that later metastasized: Was it in the lymph nodes? She no longer worries about getting breast cancer herself, no matter how many aspirations she endures for issues in her breasts.

Your older brother checks the blog often too, and always reads it. He never says anything about it, no matter what strange or uncomfortable thing he has just learned from his over-sharing little sister about her marriage, her teen years, or her body. He asks you if he should donate to certain races or causes when he is asked to do so, wondering if somehow that would offend you. He is back to calling you once in a blue moon when something needs to be decided, but you both remember when he used to call you every day because he liked to hear your voice and know you were still there.

Your husband carries many things within him that he will never be able to discuss with other men, even if they ask, which they don't. He doesn't really want to go to cancer-related events with you, because it is hard for him. This makes you angry with him. He says he would like to act as if the whole thing never happened and you say that's nice, I wish I had that option, knowing that of course he doesn't have that option either, but that he WISHES he did. He jokingly offers to shave the teenage babysitter's head for her if she decides to go that route, but he doesn't really think it's funny. He researches things online and doesn't tell you about it. He cries more than other husbands. You wish you had more patience for all of this, but in fact, you have less.

Your son asks about death a lot, because he is three, and some three year olds do that. He knows you can die from being sick. He wonders if this will happen to him. He says, but you only die if it's a really BAD sickness, right? And your six and a half year old daughter chimes in: No, you don't always die even from that. Mom had cancer, and she didn't die, and cancer is really bad. He nods his head in ageless understanding, and this idea comforts both of them.

Your friends often act as if nothing ever happened, just as your husband would like to do, and that is both good and bad. Sometimes they say the wrong thing, and you always let it go. Sometimes they say the right thing, and you appreciate it greatly: You know, you would have had cancer whether or not you decided to write about it. So, I can honestly say that I like your blog.

You write a blog, because really, what else can you do? You did all the right things in the first place. You have survived for not quite two years past treatment. You hope there is much, much longer to go. You know that no one knows how long she has, but you also know that there are many, many things that have happened to your body that make your chances for a long life slimmer than other people your age. You still love October, even though it marks the anniversary of one of the worst things that has ever happened to you, and is being used to remind you incessantly of one of the other ones. You have cheated death four times.

You are tired of it.

Thursday, October 4, 2012

Day 833: I Hate Breast Cancer

This picture was taken about a week after my cancer diagnosis in early May, 2010.

October is supposed to be a month wherein I feel celebrated, but in so many ways I don't feel anything but lost. And angry. And I've been supposedly "done" with cancer for almost two years, so I shouldn't feel that way, right? When I bring up any kind of fear to those I'm closest to, they of course tell me that I beat it, that I haven't had cancer in my body since June 4, 2010, when my tumors were removed, that I will live a long life. They tell me that because they have to believe that because of the pain it causes them to think otherwise. So, mostly, I keep it to myself.

Except here. This is my place. The place I go when there's nowhere else to go in this Cancerland. So, I'm going to list a few of the reasons that I hate cancer and am angry at cancer and I don't care who reads it or how un-inspirational folks think it is.

I hate breast cancer because:

It isn't like other cancers. You can catch it "early," and it can still come back and kill you--months, years, later. Some new conventional wisdom estimates that a minority, maybe only 30%, of breast cancers are helped through early detection. Early detection does, however, help in one major way:

It helps us as a society think of breast cancer as a benign disease that is easily "beaten," and infinitely survivable. "Survival" statistics for breast cancer mean one thing and one thing only: how likely is it that a woman who is diagnosed with breast cancer today will be alive in 5 years? 5 YEARS people. That wouldn't even get me to 40. And the reality is that early detection might mean that I will have known about my cancer longer than someone else who found the same cancer later--so technically I have a better chance of "surviving" 5 years, even if that other person and I live the exact same amount of time with our cancer. If you have breast cancer for 8 years, at which point you die, but find out about it 2 years into the tumor's growth, you will be one of the 5 year survivors, pumping up breast cancer charities' statistics. If you discover the tumor 5 years in but still die after it's been there 8 years, you will not be a 5 year survivor, and charities will be able to use you as a test case to show why early detection is so important--even though it didn't do jack shit for that other lady's life expectancy.

But I digress. I also hate breast cancer because:

I didn't even have breast cancer. After I wrote the blog about new breast cancer research showing that TNBC more closely resembles ovarian cancer than breast cancer, I really lost it. I waited for Gabe to take the kids out, and I just sat down and cried. I cried in the truest way that Katy Jacob can cry--for a few minutes, maybe two and a half, and then, I just stopped, because that's what I do. I'm not sure if I know how to cry for long periods of time anymore. I sat there and thought about the women I know who are diagnosed as TNBC today, who take taxol but not AC chemo, and are offered totally different, less toxic chemo regimens that have been used for ovarian cancer for years. I thought about PARP inhibitors. And now, I think about how much I suffered on AC, not just in the normal ways that people suffer on those poisons, but in all the other ways that were specific to me that gave my doctors pause. It might be hard for you to hear this, but imagine--just imagine--how hard it is for me to say it: I DID THAT FOR NOTHING.

I hate that I risked permanent heart damage, that could happen at any time, I risked the potential for other lethal forms of cancer caused by the drugs, I got so weak and sick and scared my children and had morbid insomnia and lost the ability to sweat for an entire year and I could go on, but the important thing is that IT WAS FOR NOTHING. I told my mom I wished I had been diagnosed TNBC 8 years ago, so it wouldn't seem so cruel to learn what I've learned just two short years later--two years too late. I would have lost my hair and gone into menopause on taxol anyway, but, man...that Red Devil, that Red Death--adriamicin. That Cytoxan that could almost kill you just looking at it. For nothing.

I hate breast cancer for reducing women to their tits. Even other women do this to us. If you do one thing for me, do this. Do not save the tatas. The tatas don't matter. Sure, I'm glad I still have mine. But if I find out in a few years that my cancer is back, what good will that do? Save me, save my life, not my tits.

I hate the misinformation. It's pretty clear that for women who are triple negative but also BRCA-, the risk of local recurrence is low. It's high for BRCA+. But for me? Cancer is much more likely to return in my liver than in my other breast. So why are doctors still encouraging double mastectomies in some cases like mine? Why do women think that mastectomies will save them when that is only true in certain circumstances? Why do people who mean well, friends of mine even, say things about breast cancer like, "oh I heard it wasn't really that bad" when 100 women die from the disease in this country every day? When 1 of your seven best friends, or you, will have it--WHY?

I hate the pink. I hate people making money off of my suffering and my family's potential loss without any real benefit for breast cancer research or any substantive changes in survival rates over the last several decades. The death rate of breast cancer is stubborn. It might look like it's falling, if you compare how many women with breast cancer die from the disease today compared to 20 years ago. But that is the wrong statistic, and it goes back to the early detection thing. Mammograms just found more cancers, so breast cancer rates increased, because women now knew they had something they didn't know they had, and the death rate became a part of that larger number. But the real number, the one that looks at breast cancer deaths per capita for women as a whole, not just women who have been diagnosed? THAT SHIT IS THE SAME. YOU ARE AS LIKELY TO DIE FROM BREAST CANCER TODAY AS YOU WERE 20 or 30 YEARS AGO.

I hate, more than anything, the fear. I hate how I have felt the last week in the gym or when walking up the hill to my house. My ankle has been giving out, hurting, refusing to correctly support my weight. I ignored it, but then I started to worry. Bone mets below the knee is rare, with about a 1-3% occurrence rate of all bone mets from breast cancer. That should make me feel better, right? Well, maybe, if I hadn't been in the 2% for all the other shit that's happened with this damn disease. Oh, I just twisted my ankle, I did it during spinning or when running after my kids or it's just because I'm getting older, right? Well, yeah--if I was normal. If I hadn't had cancer. If I didn't know young healthy women who thought they had beaten the beast only to find out they had bone mets when they were running a race, who didn't find out until they had reached the 5 year mark and thought they were free, who were thin and active and awesome and beautiful and strong and cancer just didn't give a shit. I hate having my first UTI in years, ironically just after we were finally able to give up the condoms (!!) when Gabe got the all-clear after his vasectomy, and wondering, somewhere, if that's really what was going on. All that peeing could have been a symptom of bone mets or something else, after all. I hate how scared I was of possibly getting pregnant, how I felt like a teenager, how I told Gabe, but we are not like other people, we cannot have an "oops." We have to be sure.

I hate talking to my husband about death in our marriage bed.

Some days, but not many, I hate my hair. Most of the time I love it, but I have my days when I think about that long curly hair and I want it back. And even in the middle of those moments I know that I have no patience to grow it out, and that even if I did, I wouldn't want it once it was there, because I wouldn't recognize that woman anymore.

I hate that she's gone.

I hate that I do the right things, in the normal ways, and how normal it makes me seem. I call in and ask for a strong dose of Cipro, and it works, and there goes the UTI. I modify for the ankle, it starts to feel better, and I realize that wouldn't happen with cancer. I have never been truly depressed from cancer, never been medicated, never had anxiety attacks, never been unable to work or take care of my kids or laugh or live my life. And so it is as if it was all in a dream, including the suffering I endured needlessly and the thought of the medicines I could have taken that might have helped that weren't offered to me. People forget about it, or are sick of hearing about it, and assume I am a hypochondriac or a drama queen when I've never been anything but a realist about this nonsense. I am supposed to act like I "won," but it's hard to believe that when none of us had even correctly identified the guy on the other side of the ring.

I hate breast cancer.

This month, wear green for me. It is, after all, the color of the earth during its healthiest time, and yet it is also the color of envy, the color of youthful ignorance. The one I'd love to go back to someday.

If you're looking for more lighthearted posts, I can also be found at livechickenonsix.

Monday, October 1, 2012

Day 880: I'm Aware That it's October

Before I do something crazy like become a complete recluse who refuses to leave the house due to the barrage of pink that will be thrust into my face, all cloying and infuriating in what used to be my favorite month of the year, I felt that it would help to remind myself and others that October has many meanings that have nothing to do with breasts, or cancer, or controversial charities, or my potential premature death.

October is the national month of many things in the United States. I thought that maybe I would opine on each of these, allowing you to see that the answers that most breast cancer survivors give you about "how October makes them feel" are simply vomited out of their mouths to get you to stop talking, because, really, these phrases that we as a society use to talk about breast cancer without really saying anything useful can stand for anything.

Here's to October, national...

Vegetarian Month: I feel that it is important to eat a diet rich in fruits and vegetables. If you do this, nothing bad can happen to you--ever. It's like a law.

Anti-Bullying Awareness Month: Listen, regardless of what anyone says, you are beautiful (anyway). Be strong. Have hope. Kick ass.

LGBT History Month: Sexuality is not a sin. However, being unsafe or irresponsible in sexual situations can have disastrous consequences. Make sure your partner takes on his/her share of the birth control/STD-prevention burden. People have fought for the right to love any type of body they choose, so don't be an asshole and run away because there are some unavoidable flaws in the mix. Oh, and having gone through this struggle together will make you stronger as a couple.

Arts and Humanities Month: Knowledge is power; the earlier the better. So read. Or, maybe, get a tattoo.

Pork Month: There is nothing wrong with being "other."

Clergy Appreciation Month: Many, many people are praying for you. Also, if ever there was a time for God, it's now.

Pregnancy Loss and Infant Loss Awareness Month. Some losses are just too painful to contemplate. No, you do not know how I feel, and no, it is not for the best.

Filipino American History Month. Are you aware that the vast majority of people in the world are Asian, and that more than two countries are involved in that calculation? Perhaps we need more awareness campaigns, so people can begin to tell the difference among things that they think they know some shit about.

Domestic Violence Awareness Month: It's not your fault. We need to get to the root cause.

Cyber Security Awareness Month: There are some really crazy people out there who google things like "hot skinny bald chicks with scars." Avoid these people.

Fair Trade Month. Life is unfair. But attitude is everything.

Dwarfism Awareness Month. Note to the Month people: I don't think this is the accepted term anymore. Regardless, it is your soul, your humor, your intelligence, that matters. The fact that total strangers will turn away in fear or hide their children's eyes from you when you are running errands should not matter to you one bit. Remember, laughter is the best medicine.

Auto Battery Safety Month: Regular exams and routine maintenance are the keys to survival.

And of course, for all of these issues, two other things are true.

Someone somewhere is making money off of this.

And, we need more research.

Happy October!