Monday, December 31, 2012

Day 921: KatyDidCancer Year in Review

Oh 2012, how quickly you've come and gone! And here I am, a young cancer survivor who feels lucky to be getting older, and I know there is so much that I should say, so many poignant statements that I could and probably should make about life and love and family and health and the nature of time.

But I'm not going to do that.

I love writing this blog, but damn, it can get deep. And I'm not really that deep, at least not most of the time. I'm the girl who likes to watch football and makes playlists about bootys and reads People magazine and steals the last swing from some kid at the park so I can use it myself.

So, I'm going to pay homage to some of the people who have helped me keep it light this year, which was easier to do than in 2011 or God help me 2010, but still a bit of a challenge on occasion.

Here's to the people who make the Internet worthwhile, those lost souls who do amazingly awesome Google searches that send them to katydidcancer, which was clearly not what they were looking for, though they chose to read it all the same.

It may be disturbing, but I will always take some kind of misplaced cancer girl pride in all the searches for "hot bald girls," "sexy bald women," "hot skinny bald chicks with scars," (whoa, that's specific!) and "hot naked body" that lead people here, though I'm not exactly sure about that last one. I've put some questionable pics on here, but nothing I would be embarrassed for my family to see. Furthermore, to all those searching for GI Jane, I know you were hoping for Demi Moore, but oops you got me instead! Holla!

And to all the pervs out there who are looking for some online pleasure but have clearly not really learned how to use the Internet, you absolutely deserve to get sent to a cancer blog! Google ain't THAT smart, so if you're searching for "16 year old breasts," "wife undressing," "nice nipples," "my first time," or Jesus Christ, "corrupting virgins," you might get better results if YOU GOT THE HELL OFF OF GOOGLE. And it kind of seems redundant to search for "naked vagina," unless you are a 10 year old boy and you don't know what else to type in, and then I feel really, really bad that you got sent to a breast cancer blog because that will be more traumatizing to you than what you were hoping to find.

And I don't even know where to begin with "breast vacuum." Yikes.

And while not necessarily "light," I love seeing the searches from people whom I assume were recently diagnosed with cancer but who do not engage in the typical, clinical searches. By far the most read post of mine is First Post Chemo Haircut, because there are literally hundreds of people, women, I assume, who go into google and type "first post chemo haircut," "haircuts after chemo" or something almost exactly like that. They are probably the more normal, run of the mill cancer survivors, right? Then there are the folks who think about things like this:

"Chemo ennui." "pole dancing fitness for breast cancer survivors." And my personal favorite: "Cancer, I'm suck." Can I get an amen?

And I DEFINITELY need an Amen for "pimps with cancer."


To all those who were looking for useful information online, I'm glad that I could serve as a PSA of sorts. Because someone has to help those dudes who are looking up "vasectomy shave" and "shaving my balls."

A big thank you to those who remind me that I can't be that boring of a person, because if I was, no one doing the following searches would possibly be sent to a blog about my life: "son wearing sister's clothes," "me in a body cast," and the ever-so-obvious "pullups in prison."

To those with existential crises, I salute you: "How long is 642 days?" "places to go." and "I feel like I'm doing everything halfway."

Some problems are bigger than Google.

And some are too specific for the Internet Gods to handle, methinks: "my girlfriend is running away with the circus." "is kissing ungodly?"

and finally...this. This search, which actually led to a post in my other blog, one written about my wedding, of all things:

"how to O and get your brother's girlfriend to look at your penis."

Ain't a search engine on God's green earth that could help that guy.

So thank you to those who read my blogs, and thank you to those who just make me smile. After all, if no one had ever googled "live chicken on six," and then read the really deep and insightful cancer post he was sent to, I wouldn't have a second blog at all.

So here's to 2013. May we all live through it, and love through it, and laugh through it. Nothing much else we can do!

Tuesday, December 25, 2012

Day 915: The Ghost of Christmas Yet to Come

Our Christmases look much like the Christmases of other young families in places like Chicago at the front end of the 21st century. We bake cookies. We try our damndest to encourage our kids to believe in Santa, in magic, and we get teary-eyed when they explain, using their wonderful childlike logic, why they do believe in things that seem impossible. We attend adorable holiday performances at preschool and elementary school, even arriving extra early to get a front row seat so we can take a video of our daughter shouting out her lines in her coveted role as an elf, recording for posterity her pride in being one of only three first graders awarded a speaking part. We buy too many presents for our kids. We tell them to listen for hooves and sleighbells on the roof, and remind them that Santa won't arrive until they are asleep. We change our handwriting and choose different wrapping paper for the presents from non-magical adults. We, my husband and I, have been together almost ten years and yet we don't really know what presents to bestow on each other, so I buy him clothes, which he doesn't want but always likes, and he buys me jewelry, which is always different than what I would buy myself but looks like me all the same. We throw a big party. We drink a little too much. We bring our families, strange as they are, together. We take time off of work. We love each other.

And so it goes. Like all parents, witnessing Christmas through our children's eyes reminds us of our own years when we were caught up in the magic on the other side, happy to be on the receiving end of all the efforts that adults put into making us smile. Like all couples who have children together, but who at one point did not, we remember the holidays that we spent when we were younger and newly in love. We remember our first Christmas in our first house together. We think about the first Christmas that we had as a family, our family, the one we made, as a choice. And I at least think about my youngest child's first Christmas, which was the last one he had with parents who still believed that the world was offering our beautiful little family a long and unopened gift that just couldn't possibly end.

I spent today, and most of the last month or so, very much wrapped up in the joy and stress and reality of this Christmas, this present-day, 2012 Christmas.

And perhaps we are not that different than other couples in this, in what I am about to say. Perhaps I should not speak for my husband, who might not feel this way at all. But I have these moments, these moments of clarity both large and small, where I am reminded of the Christmases yet to come, including the ones that I will never see. It's that glimpse of the void that is part of what makes us all human, but it is something else too, something less dramatic, more practical, really.

It doesn't happen often, but I think about holidays, seasons, life events that might happen in my absence. I don't do this out of self-pity or in order to bring some kind of dramatic flair to my life, but rather because I've been put in a position to think about it.

During our holiday party, we were happy that of the 50 or so guests, our kids' best friends were able to attend. Lenny has had a best friend since age 2, and Augie since 7 months. I never believed that children that young could make such meaningful bonds until I witnessed it for myself. Those bonds have lasted through different schools and now even different towns. And as Augie's buddy was leaving, we decided to take a few pictures of them. The photos of them are usually just blurs of little boys making superhero poses...but not all of them, not this time.

When I saw this picture, with the two of them looking like pint-sized frat boys, I had to turn away and shut my eyes so that no one could see my tears. For the first time ever, I could imagine what my son would look like as an older child, a teenager, even a man. In absence of the three year old voice, the goofy mannerisms and outlandish behavior, I could see him, as he will be someday, this good looking little boy of mine.

And it brought me back to all those days in 2011, when just the sight of boys--teenagers especially, but even older children--would make me wistful with that strange, reverse nostalgia that comes from something like cancer. I used to wonder, what would it be like if he was taller than me? If he had a deep voice? If he was embarrassed to be seen with me? If he began to date girls just like me or the opposite of me?

And will I live to see any of that?

Of course, none of us knows what we will live to see. I have lived to see more in the last two and a half years than many women diagnosed with triple negative breast cancer. I have seen a lot more than a lot of people who are no longer here for one reason or another.

But I still think about it. And while it makes me wistful, and somewhat sad, to imagine the things I might miss, for the most part, the tears are not tears of sadness.

I am grateful for the strong belief that I have, that every parent has, that he will grow up, that he will become a man, that he will live a wonderful life, with or without me. It is the almost frightening power of that belief that brings the tears.

That belief is so strong that it enables us to invent magic. On some level, maybe we as parents need this Christmas type of magic to be real, so that we can convince ourselves that through some magical force, our children's lives will be beautiful and eternal, even here on Earth.

Like many parents, I gave a lot of thought to what I would tell my daughter if she asked me about certain recent events that took place in a first grade classroom.

My daughter is in first grade.

Do you hear me?

My daughter is in first grade.

She has not asked me a thing, and I don't think she knows about it. I have no intention of telling her if she doesn't ask. But I did figure out what I would tell her if she wanted to talk about it:

Think of all the adults who have protected you all of your life. You have attended daycare since you were three months old, and every adult who has ever cared for you, and every teenager for that matter, has loved you. They would all protect you, no matter what. I don't have any idea why such horrible things happen. But I want you to understand something. Do you remember when I had cancer, which is obviously a bad thing? Do you remember how easily I talked to you about it, how I told you what would happen, and how we didn't keep things from you? Do you know why I was able to do that?

Because it was happening to me, not to you. And I could take it. I could stand it.

And I know, because she's my kid, that she would understand what I was trying to say.

And I know, I just know, that they will have a million more Christmases, whether I am here or not, and the magic it takes for me to believe that is the magic that Christmas is made of, and that is good enough for me.

Here's to a wonderful Christmas that was yet to come just a few short years ago, when it was hard to see, but it happened all the same.

Like magic.

Monday, December 17, 2012

Day 907: Power and Freedom

There is one thing that every cancer survivor I know wishes for at this time of year, or any time of year. And that is to have never had cancer.

Mind you, I did not say that we wish for cancer never to return, never to metastasize, though of course we wish those things too. But the dream is to return to things as they once were, which we all know is impossible. As I said to the kindly technician who prepared me for my sentinel node biopsy and asked me "is it all right if I do this?" as she moved through the motions of the procedure:

No, it's not all right. I want to go home!

You have to laugh. What else can you do, really?

While I will hail any advancement that might help those suffering from metastatic disease, while I cross my fingers in hope that someone could figure out what triple negative breast cancer really IS, so that it could be treated adequately in the future, the various "cures" and treatments that exist today or might exist in the future give me little but pause.

I acknowledge that cancer will probably always be with us, though I think we could do a much better job at figuring out how to prevent it. But there is so much pressure on us as survivors to tough it out, to change our habits, to win, to beat the beast. I just wish that the culture of cancer wasn't so closely linked to our misplaced obsession with individual power.

I believe that we experience cancer differently in the United States, in part due to this problem.

We are a nation that is so focused on its own culture of machismo and bravado that we don't even realize it; women engage in this as well. So, we find out we have cancer, and we fight ourselves, we war, we are suddenly, horribly responsible for saving our own skins through our willingness to go to war with cancer, which happens to be something that resides in our own bodies. Therefore, we war with ourselves.

We delude ourselves into thinking that we have power over this disease, that diseases are, in fact, things that only happen to "damaged" or "weak" people. We blame the stress of everyday life more than the various chemicals that we put into our bodies, knowingly or unknowingly, every single day. We do this, and we put the onus of survival on ourselves, while the power to wield environmental or cultural decisions lies with someone else, or something else, entirely.

We delude ourselves even in the ways that we talk about handling "side effects" of cancer treatment. While I experienced a multitude of very bizarre side effects to chemo, and, more importantly, other drugs prescribed to manage the side effects everyone assumed I would have, I take issue with the notion that the harbingers of cancer treatment--specifically, toxic chemotherapy--are "side effects." The big issues that most breast cancer survivors who take chemotherapy have are these: total baldness, extreme nausea and vomiting, destruction of the ovaries and the consequent onset of menopause, neuropathy, chemobrain, anorexia, mouth sores and other lesions, extreme dryness throughout the body, paralyzing fatigue, and high risk for subsequent cancers or heart disease.

These are not side effects that we can "manage" or "hide" with other medications. These are the intended responses of the chemotherapy we are given. And yes, I mean that. What, after all, is adriamicin? That drug affectionately called the red devil or the red death--what is it? Well, honestly, I don't know. I do know that when that syringe of what appears to be red koolaid is pushed into you via IV, you literally feel the coldness of death course through your veins. I never knew what that phrase meant, until I experienced it for myself.

And what is taxol? Taxol is a derivative of yew tree bark. It is insoluble to the body, so must be dissolved in a castor oil solution, causing severe allergic reactions in a substantial minority of patients (including me). If you were in the wild, and you ate this bark, you would die.

And what is cytoxan, the third chemo that I took, you might ask? Well, it is, quite simply...a form of mustard gas. Now do you understand the neuropathy and chemobrain that some people experience?

And finally, we come to radiation. What more is there to say? People worry about the radiation in a plane ride, the radiation present in a banana. Those of us who did radiation treatment for cancer essentially lived in a Chernobyl-esque environment, one that "plumped up our breasts," because it fundamentally altered the DNA of the cells it touched.

And so we must acknowledge that the horrible "side effects" of such treatments are not really side effects at all, but expected results--these are cell-killers, after all. Some of us were unlucky, and others lucky, in the extent to which we experienced these effects and whether or not they were long-lasting. Sleep, diet, and exercise do wonders for making us feel better, but they can at times be weak forces against the powerful poison that some of us were powerless to avoid if we wanted to live.

We did not choose to do this to ourselves, and these weapons of war (literally, if you think of the comparisons between chemical weapons and chemotherapy) can leave us feeling eternally conflicted for what we have done to ourselves. I have asked myself many times, dear Lord, what have I done? Only to remind myself THAT I DID NOT DO THIS. I AM NOT AT FAULT FOR THIS.

Cancer is not alone in the way that we attempt to "empower" victims by telling them that they control their own sorry fates. We do this to other victims as well. In fact, we have tried, and mostly succeeded, to convince people that being a victim is bad, because it means you are weak and worthless. So we tell victims of sexual assault (which I would contend should just be called rape--there is no sex in rape, only violence) through our continued focus on how women, and even children, can learn to be "badasses" that they are ultimately responsible for the situation that has befallen them. We blame women for their dress, their sexual history, their decisions to be in a certain place at a certain time, rather than question those who believe they have the right to other people's bodies. We condone the culture of rape, and claim that the "power" to prevent it lies with the individual who experiences it.

In one situation that I experienced when I was very young, that I escaped before being raped but which changed me forever, I was left with this haunting thought. I knew, I just knew, that this would not have happened to me if I was a different girl, if I had just wanted to dance and drink and flirt with the boys like everyone else. I thought that this happened to me because I was the "wrong kind of girl," and someone was punishing me for it. And what kind of girl was that, you ask?

I was the only girl at the party who wanted to watch the basketball game on TV.

I have spent more than 20 years holding steadfast to that girl, because the problem was never her--not ever.

After all, what if someone is actually more powerful than you? Just by nature of being bigger, and stronger? Does that mean you are weak?

Or, that he shouldn't have used his power to commit an act of violence?

We do this, and we do not even seem to realize we are doing it. We try and convince ourselves that there is some universe in which it makes sense for kindergarten teachers, who are mostly a friendly, nonviolent sort, to carry semi-automatic weapons. We plan to teach five year olds what to do if their classroom is transformed into a warzone. We turn every individual into the one who should protect himself or herself, and we fail to focus on the collective responsibility that we all have to protect one another. We avoid policies that could bring about real, meaningful change, because we have created a culture where everyone is out for himself.

So it is with cancer. I contend that it is not for me to be brave, or beautiful, or strong. It is for us as a society to try to make strides towards eradicating a disease that will afflict fully 50% of the population before death. It is for us as a society to hold each other up in times of sickness, to allow ourselves to accept some level of weakness and to let others help us.

Every time we personalize a social issue, we move away from any useful solution. We take large, complex problems, and concoct for them fantastical, even juvenile, solutions. Perhaps I am a superhuman, capable of protecting myself and my family from every possible scourge: famine, illness, violence, poverty.

Or, perhaps I am not. Perhaps none of us are. Perhaps true power, true freedom even, lies in the ability to not have to fight, to live out the promise of our lives unscathed because we have ensured a civil society that embraces a real sense of community and collective mores.

If there is one thing that has made me feel free in this life, that has made me feel powerful, it has been the ability to walk away. To walk away from my own convulsions, to walk when I once could not, to run from people who intended to hurt me, to sacrifice worldly possessions in exchange for a safe ride home, to live for two years without poisoning myself, to walk, or run, or crawl, back into the normalcy and complacency of my life. I might be doomed to a life inside this getaway car, always looking over my shoulder, but I am not the one who committed the crime.

If we must be "empowered," we have already lost half the battle. Would that we would not need such power in the first place.

Monday, December 10, 2012

Day 900: In Sickness: Two Years Post-Cancer Treatment

I haven't written in a while, and I definitely did not intend to write today--until I looked at the calendar and realized that today is December 10.

December 10! My day of celebration. My two years post cancer treatment. And it almost slipped my mind, just as it did last year.

I am almost amazed that I can look at this computer screen without passing out. I have been sicker than I've been in years over the last few days, with an illness that seemed to come out of nowhere. Now, I did go to this fancy "ball" on Saturday night in my neighborhood, and I will admit that I had too much to drink--at least for me. That means that I was drinking Jameson's on the rocks, and I had three of them over the five hours we were there. I was also drinking water, and eating, and dancing my ass off, so while I knew I was drunk, it didn't seem that serious. Of course, I don't weigh a whole hell of a lot, so it doesn't take much. Regardless, we had left for the event feeling a little guilty, since both of our kids were sick with high fevers and general lethargy. We had planned to take them to their grandma's house to spend the night, and they were so excited about that, and SO disappointed when we said that couldn't happen. My mom was willing to come out to our house right before bedtime so we could still go to the ball, so on we went.

I was a little out of it when we got home, much to Gabe's amusement and pleasure I'm sure. Somehow, I still felt drunk at 4 in the morning when I awoke to go to the bathroom, which didn't make much sense to me. When I finally emerged from bed at 8 am, I felt like I had the most egregious hangover of all time, rivaling the worst (and first) hangover I had ever had, 10 years ago. That seemed strange, since I hadn't drunk THAT much. I made myself coffee (mistake, I know), had some quiche and some fruit. I felt like death warmed over. I went back to bed, feeling like that "bad mom" who can't tend to her sick kids because she's too much of a party girl.

Then, with a look of genuine concern on his face, Gabe decided to take my temperature. The thermometer read 101, which is about a 4 degree fever for me. I realized that my entire body ached, especially in my hips, deep in my bones. I had chills. When I finally vomited, everything spewed forth like a fire hydrant.

I spent 24 hours not moving from my bed, except to get sick in the bathroom. At one point, it was coming out both ends. Gross, I know.

But also? Not a hangover.

That Jameson didn't help, and God knows it will be a long time until I drink that again. But my kids had the right idea--on Saturday, neither of them ate anything. ANYTHING. They refused every single thing we offered them except one popsicle when my mom showed up. So their little bodies were smarter than mine, which was unlucky enough to be filled with alcohol and mini-cheeseburgers and pasta and UGH just talking about it makes me want to hurl.

Yesterday, I managed to eat about 3 teaspoons of jello and one saltine cracker. I couldn't even stomach ginger ale. I lost almost 3 pounds. I've managed a piece of toast, a little jello, and some Product 19 cereal today.

OK, so damn, Katy, you got sick. Who cares? What does that have to do with cancer?

Well, aside from the fact that even in the midst of a very obvious stomach flu, I sat there wondering why my hips just felt like they were ON FIRE. In the back of my mind, I wondered about cancer. Of course, that's ridiculous. So is having an aggressive form of breast cancer at age 34. So, your mind goes weird places as you sleep for maybe 10 minutes at a time, all in fits and starts.

I was so out of it yesterday that I did NOTHING. I didn't watch tv, nor read. I laid there, awake half the time, staring into space. Now, my body is mad at me for not having moved for the last two days. Gabe seemed to think I was at death's door, because I NEVER do NOTHING. I usually do at least three things at once. He seemed really worried as he kept tending to me and the kids and probably wondering when he was going to get this illness.

It reminded me of the fact that I hadn't vomited since chemo. They told me back then that "people don't really get sick on chemo anymore" because they are freaking LIARS. That $100 per pill Emend was a wonder drug, but because my body rejected all the other potent side effect meds, I got sick all the time. It was a relief to vomit, for that feeling of nausea to subside for even a minute. I was desperate inside that nausea, forcing myself to puke, eating only to survive. I lost 7 pounds in 10 days, and I only weighed 117 to begin with; that's how I learned that my "fighting weight," the weight I need to be to feel human, is 113. So at 115 this morning, I knew I needed to get something in my stomach.

I remember not so long ago, Gabe consoling me in the bathroom, patting my bald head. I remember him kissing me less, and I thought it was because he was no longer attracted to me, but it turned out to be because he was so afraid he would pass germs on to me and than I would die from weakened immunity that he was scared to be intimate with me. I remember not sleeping at all for five nights, losing the ability to sweat and to cry, the menopause, all of the crazy shit that happened.

And I remember that I just kept doing everything the same, to the extent that I could. I worked, I went out socially, I still had a sex life and I still mothered my kids and I lived a relatively normal life within all that shitty shitty sickness.

So what's changed? I get the flu for 36 hours and I just throw in the towel? I mean, I didn't even SEE my kids yesterday. I didn't consider going into work today, though I have a lot going on that needs to get done. I laughed when Gabe asked if he should sleep in our bed or downstairs. I have had so much worse, for such longer periods of time, so what gives?

I think that we react differently to things when we know they are temporary. I knew this was a flu, and even though it doesn't help to think about the proverbial "24 hour" nature of these things when you're terrified to stand up because you know that will make you sick again, you just figure you can wait it out. When you know that you will feel like shit for at least four months and that maybe, at the end of the day, that's as good as it will get, that worse things might await you, you stubbornly cling to your life the way you used to live it.

I was in cancer treatment for 8 months. I fast-tracked myself, gave myself little to no time between stages of treatment, so that I could be done by Christmas in 2010. The side effects lingered; I had horrible hot flashes and other menopause side effects for three more months. So, I dealt with feeling like shit from cancer for a little less than a year.

And it's been two years, to the day, since I finished with that. I still have side effects, especially from surgery, and I'm dealing with this annoying second puberty, but in general I feel pretty damn great.

These two years have given me the normalcy that other people have--the ability to get sick and just be pathetic, even if I still have those thoughts that question every illness, those moments when I wonder if each ache or pain is cancer returning. Cancer related sickness was something to fight, not give into, something to work through because I just didn't know how it would be after treatment, or if there would be an "after treatment" for me. For so many women, that time never comes.

Two years ago today, I had my last radiation treatment and, hopefully, finished my cancer treatment for good. I wrote a post that day about all that I had gone through that is still painful for me to read. I look like such a cancer girl in the pictures in that post, and yet there's something else there too, some essential side of myself, the part that had stopped caring about eyebrows, the whole "attitude" that people told me I possessed back then, which I really couldn't see in myself.

I have had a two year reprieve, a gift, really, something that might just be temporary, though we can sure as hell hope not. I have had more time since cancer than I had in it. And that time has allowed me to get sick like a NORMAL person, one who doesn't have to just keep plugging through the mess. I am very, very grateful for these two years. I am also very, very cognizant of the strength it takes to be in cancer treatment forever, as so many people are forced to do.

If I felt healthier, I would celebrate this day, but instead I will end with three thoughts. One is a solemn vow to pretty much never eat quiche again. The next is something that happened Saturday night at the party, a small thing, really. I was talking to a woman who knew me from Montessori and introduced me to her husband as "Lenny's mom," probably because she had momentarily forgotten my name. He looked absolutely shocked to see me. He touched my shoulder and said "Wow! I didn't even recognize you." All I could do was laugh, especially because as I danced the night away with my rhythm-impaired husband, tipsy and happy, I could really barely recognize myself.

And finally--this. This passage, written two years ago, when I was so much myself, but not enough time had passed for me to see it. Here's to more sets of two years!

I am not going to be one of those people who says that cancer gave me a gift, and I am not going to smile about the hope and inspiration it brought into my life. Maybe I should, but that’s not me, and those words seem pretty hollow, so if people wanted to hear that I assume they stopped reading this months ago. I will say that the one thing cancer did for me was give me a reason to write about something other than economic development, payments, or predatory financial scams. It’s not that this trip was worth it. It was total crap, actually, and the trip hasn’t ended, won’t for years, assuming I have years. But remember the scene in Field of Dreams when James Earl Jones goes into the cornfield? Why does he get to go? Well, maybe it wasn’t a privilege, but he went so he could write about it, and tell other people what it was like. I don’t think for one second that I’m as cool as James Earl Jones, or that I have some great wisdom to impart, or that I have some kind of absurd cancer calling, but someone or something pushed me into the cornfield, and in order to get through the maze, I have needed to write my way out.

Friday, November 30, 2012

Day 890: Magical Thinking

A few days ago, I wrote a post about my strong belief that Gilda's Club should not change its name. I decided not to make that a KatyDidCancer post, because to me, it was broader than that. When Radner spoke of "Delicious Ambiguity," she admitted that she had wanted to continue to believe in "magical thinking," even through her cancer diagnosis, but at some point she just couldn't anymore.

Doesn't that happen to all of us at some point? Of course it does. Part of what makes childhood unique is the strong power of magical thinking. Make-believe games, imaginary friends, playing more with the box than the toy inside it, and the ways that children continuously remake themselves, are all ways that kids learn to navigate the world.

I think this is really important. My kids go or did go to Montessori school for early childhood education, but I don't believe in the Montessori philosophy that says that children should only play "real" games, lest they not be able to tell the difference between fantasy and reality. I don't believe in this because here I am, 37 years old, and I want someone to tell me:

What the hell is the difference between fantasy and reality?

Truth is often stranger than fiction. Take it from me. I've learned that the hard way.

Around this time of year, there are millions of parents who navigate ways to try to keep the idea and the magic of Christmas alive for their kids. We aren't religious here, but we are serious about our Santa. The kids even believe in Santa Mouse--he stuffs the stockings and you have to leave him cheese. Trust me, it's a book--and a classic one, at that.

Augie is three and a half and believes in Santa whole-heartedly. I've wondered about Lenny, though. Last year on Christmas eve, we showed her the Norad tracker online. Santa was in Estonia, on his way to Helsinki. I told Lenny how long the tracker said it would take him to get from the one to the other, and then asked her when Santa should arrive in Chicago. Lenny is a geography nerd. There she was, 5 years old, and she knew all about Estonia and Helsinki. Then, she put her fingers on the computer, did a little calculation in her mind, included the time zone change, and guessed to within 45 minutes of the tracker's estimate.

How can a kid like that believe in Santa? Her logical mind is telling her one thing, but her magical thinking heart was telling her another.

So you know we really screwed up when the tooth fairy skipped over this house on Lenny's third lost tooth. We had to make up a whole story about the weather being the reason she couldn't make it. I know she wanted to believe us. And I know that she didn't, but she played along anyway.

I played along too, most of my childhood. I tried to pray, came to the conclusion I was talking to myself. I listened for hooves on the roof on December 24 for as long as I could, until I fell asleep. I ignored my parents' handwriting on all the notes from various magical beings. I cried when my brother told me there was no Santa, even though I knew that already.

Having children proves to you that there are very few differences between being a child and being an adult. Even children wish they could believe in things that seem impossible. As an adult, you take great joy in the magic. I swear my mom was still playing Santa when I was 20. We tried to keep the magic in the season even when the season proved to be ridiculous, like the last year we had a real Christmas tree, when I was maybe 17 and my brother 20. We bought the tree, they wrapped it in that stuff, put it on the car. My mom drove us back to the house we grew up in, which would sell to another family the next year when my mom moved into a three room apartment, and the whole drive we wondered what that strange chirping sound was. We got home to find a bird had been dying in the wrapping the whole time.

My brother had to vacuum the dead bird out of the tree. The next year, we bought a small fake tree, and that is the tree that stands in my house to this day.

Oh, how life steps in, even when the visions of sugarplums are dancing.

But the mind, or maybe it's the heart, is stronger than reality sometimes. I don't think that changes with adulthood--it just shifts. It is that heart, that mind over matter, that allows us to keep plugging along, laughing, loving, working, while death sits tapping at our shoulders.

Having children just makes this clearer.

Yesterday, Lenny pulled Gabe aside and whispered in his ear. There's really nothing for me to add to this.

Daddy, I want to tell you something. I just realized that I can believe in things that I can't see. Last year, I thought that Santa Claus was just someone in our family who left presents under the tree when everyone else was asleep. But now I realize that's not true.

Because who would want to stay up until midnight?

Monday, November 26, 2012

Day 886: S*** Moms with Cancer Say, Part Two

There's this pervasive rhetoric out there that cancer makes you some kind of uber-parent. After cancer, you are apparently supposed to be infused with a Zen-like understanding of the universe that enables you to calmly and rationally deal with any parental situation put before you. You are supposed to change dramatically, and yet not allow it to be OBVIOUS that you have changed, or why. So you aren't supposed to bring up the Big C at the same time that your life is supposed to be changed for the better because of it.

That's a bunch of crap.

I've said it before--I'm an impatient person. It's entirely possible that cancer has made me less patient, not more, but we will never know, will we? Because this is the only Katy that there is. I started thinking about how we might have some slightly altered conversations at my house the other day, when I got pissed at Gabe for forgetting to feed the kids any lunch on Thanksgiving. I was cooking for two days, and then I went for a walk, hoping they would have had a snack by the time I got back. I even reminded him about it before I left. But no, they were all too busy playing outside. I know I should have been basking in the post-cancer bliss of appreciation for the beautiful weather, but instead, I was annoyed by how hungry they were just an hour before Thanksgiving dinner. So I said this:

I have been cooking for two days. You are NOT eating right now. You will just have to be hungry until dinner. OK, fine, you can have a banana--but that's IT. Your DAD was supposed to REMEMBER to feed you. (Turns to guilty party). Jesus Christ honey, how can you forget to feed your own children? I mean, WHAT WOULD YOU DO IF I WAS DEAD?!

After the look Gabe gave me for that one, I thought it would be worth sharing some other gems as an addendum to the first installment of this, written almost a year ago:

What do you MEAN you don't like this dinner? Do you understand that this food is absolutely DELICIOUS (shoveling food into mouth, so glad to be able to taste it and keep it down)? It isn't a requirement that food taste good you know! YOU STILL HAVE TO EAT IT!

So, do you think I should wear my hair for Halloween, like as part of my costume? No? Well what should we do with it? Do you want to play with it? No? How about one of the other wigs then? The normal ones or the green one or the purple one? Maybe one of your dolls could wear them.

You're awake because you're having nightmares about a dog getting bitten by tics? Well, you know, that's not so bad. I'm sure the dog will live. We all need to sleep now.

You injured yourself? Are you bleeding? I'm sure you'll live.

So you have injured yourself and it's just bleeding a little? OK let me get a bandaid. You'll live. Tell your dad if it gets worse, because I'm going to the gym.

Lenny, have you lost weight? You don't have any weight to lose! Take it from me! You will feel weaker, not better, if you get smaller. Here's some butter to eat and also some two pound weights. Start lifting!

No, I don't remember when the dinosaurs died. None of us remembers that. No, we were not zero, we were nothing. Humans didn't exist. Do you want some raisins?

Yes, your dad and I are going out two nights in a row. We still like each other and life's short.

No honey, I don't really remember when you first learned to walk.

I'm going to the doctor. Jeez, kiddo, it's only a checkup. DON'T WORRY ABOUT IT!

Yes, Daddy is having surgery. What's the big deal? Lots of people have surgery. Why do you need to know why? Wait, why are you crying? Oh shit it's just surgery so we can't have any more kids! There's nothing wrong with him! Why is he doing the surgery and not me? Well, I've done enough.

Look whatever your name is, you had better listen to me!

Lenny, if you don't take care of your hair, we are cutting it super short. These tangles are ridiculous. Augie, you will just have to put up with people raving about your curls all the time. You both know something they don't know: IT'S JUST HAIR.

Don't fake cough at me. Pretending to be sick isn't funny.

So I see that your favorite stuffed animal right now is a demon with a pitchfork. What's his name? Little devil? Cute.

I know it's a school night, but we are going to go to dinner and go mini-golfing, because tomorrow is my birthday and I'm really happy to turn 37. You won't get enough sleep but I don't really see how that's relevant in the grand scheme of things.

Yes, I see that your brother has grabbed onto your leg and won't let go, and you look pretty annoyed about it. Go ahead, hit him a little. You told him to stop at least five times, and you're pretty strong. Use it while you've got it.

Are you really going to keep using that pacifier? You know what, fine. I'm not going to stop you.

Yes, everyone dies. Hopefully not any of us anytime soon.

And then there are all the silences, the times when I don't say anything, because my kids ask me about what they will be when they grow up or where they will live or they talk about getting married, not even really knowing what that means, and I just slightly turn away. Still wondering whether I'll get to see any of that. Still a sucker for Augie's go-to strategy for getting out of trouble, even when he breaks a vase that held branches of the pussy willow tree from my dead grandmother's garden and it came down to me to discipline him. He sobbed, asking, "Is it going to be all right?" And I said No, the vase won't be all right. It's broken forever and you need to apologize and listen when we tell you not to do things, like throw stuff in the house. You might need to use some money in your piggy bank to help replace it.

And then he looked at me with those big brown eyes, asked, "kiss?" and grabbed me by the back of the neck and swooped in like he always does, something I'm sure he learned in one of his past lives, and because he believes that this fixes anything and I don't really believe I'm in a position to argue, I responded: And yeah, in general? It's going to be all right..

This photo was taken 10 days before my cancer diagnosis.

Wednesday, November 21, 2012

Day 881: On Thanks

This is the third year that I have felt the peculiar pressure to try to prove to the world that I am thankful for being here, to make it clear that I feel grateful for every breath in a way that others do not. It is an odd bit of cancer-related malaise, this assumption that I of all people must be happy to be here in the world.

It is odd, because it is false.

It is not false because I am not happy, or thankful, or relieved. I wrote what I needed to write about how it feels to contemplate Thanksgiving post-cancer last year, and someone once said that what was once written well need not be written again. No, it is false because it is ridiculous to assume that I, and others who are experiencing or coming out of difficult times, didn't feel gratitude before my suffering commenced.

I am bothered by our focus on thanks at Thanksgiving. It reminds me of our focus on "tolerance" when we are reminded to contemplate the "other." Each carries within it an expectation of privilege, a collective hand across the brow that says "whew! glad I'm not that other guy!" After all, we are encouraged to give thanks for our plenty, as if it would be appalling not to have it. We are encouraged to remember others who are less fortunate, as if they are somehow separate from us. This is not so different from being told to tolerate the existence of other people in the world, as if the reminder that not everyone's life looks like ours is simply a bothersome inconvenience.

Our culture is obsessed with the idea that we can all lead "purposeful" lives, doing what we want, bestowing our gifts on the world. If a person is adept at something, such as writing, she is told that she has a gift that she is obligated to share. She might disagree, not because she wants to keep this skill to herself, but because she is not at all convinced that her place in the world is important per se. She is fairly convinced that no great chasm will exist in the universe when her time is up, and she does not believe that we were placed here on earth to be our fullest selves. In fact, she is not religious, and does not believe that we were placed here at all, or that any one of us has a specific destiny to fulfill.

So what is the purpose of all of this, in this context? How should we place our relative plenty in the face of so much nothingness?

Perhaps we could start by recognizing the illusion of choice. We live in a society that believes in its own myths, one that puts forth the idea that life is but a series of choices that are open and equal to all people, and we only have to have the moxie and strength and determination to make the right ones. But that is an assumption so steeped in privilege that it doesn't even recognize itself as privilege.

When a person feels she does not have a lot of choices, that does not mean that she is weak, or not trying hard enough, or that she has a deficient personality. Choice is relative. A lumpectomy is not a preferred choice over a mastectomy, for example; one wishes only for the choice of going home, never having had cancer at all. One is not truly "choosing" one form of toxic chemotherapy over another. And if a woman finds herself in a situation where she is not particularly "fulfilled," such as in a job that has lost its luster, that is not because she is making a cowardly choice. It is, perhaps, because she recognizes that life isn't always about fulfillment of desire, but rather fulfillment of responsibility. She can see the people who have lost the ability to choose how to spend their days due to their experience with illness or discrimination or plain bad luck, and she can realize that sometimes, life is what you have ended up with, not what you had planned.

If we can choose, we should realize why we are in a position to do that. Our choices and the things we have to be thankful for are but an accident of history; they can change or be taken away at any time. This makes me think about how I used to argue with some of the truly dedicated students studying urban planning with me in graduate school, who were convinced that things such as big box retailers and strip malls were destroying the fabric of our lives. As they made erudite arguments about why local, mom and pop stores should be encouraged in lower income areas, I would ask this:

Why do poor people always have to choose between having something that is less and having nothing?

In middle class communities, folks do not have to choose between going to a discount pharmacy such as Walgreens to pick up their medications and going to an expensive, quirky store managed by local residents that throws itself back to the 1950s with more than a hint of ironic nostalgia. Rich people do not have to go to community meetings and public hearings in order to have the option not to purchase milk for their children at a high markup in a liquor store. When there are real choices, we can demand the best. That does not mean that others shouldn't be able to demand at least something.

While some people sit high on the mountain discussing the rain, people in the valley already know that it is flooding.

What the people on the mountain don't necessarily understand is that they will, inevitably, live in the valley one day themselves. That is true for all of us, whether we admit it or not. It is what we do with our knowledge of this that provides the possibility for moments of real grace.

This year, during our annual time of Thanksgiving, my husband made this remark to me: We can't all be so lucky, Kate. Not everyone has found that fountain of youth, as you have. I laughed and said that half of the fountain of youth is good DNA. Silently, I told myself this: The other half lies in knowing that you will die.

That is this year. Last year, in my Thanksgiving post, I said this: Maybe we all should be thankful to have suffered, and survived.

That's the only absolute truth that I really understand. It is through suffering that we learn empathy, that we come closer to the collective understanding of God, that we can be grateful for the shoes we walk in every day. So I would say that we were not put on this earth to fulfill ourselves, but rather to make improvements. We can only recognize what needs to be changed if we have suffered and lost ourselves.

And so, this year, I will not focus on being thankful. I will, rather, be mindful. Mindful of all that I have, of all that I have lost, of the opportunities and challenges that await me, and, most importantly, of the extreme specificity of living in this body, in this time and place, at this point in history, and of what that means for how my life is lived as opposed to how others experience the world.

All of these deeper thoughts bring me, at last, to this: Today, while I was searching for all of my Thanksgiving recipes, I came across a poem that I had written about 10 years ago. Amongst all of the coupons, recipes, menus and random pieces of paper in a timeworn binder, sat this poem that is about, of all things, a radio station I listened to as a teenager that advertised itself as "all rap, all the time." You could only hear this station if you happened to be in certain areas--blocks, really--on the west side of Chicago. This might seem strange to you, but it is a fitting ending to me:

AM 950

It’s what we listened to
before fancy car stereos
or air conditioning
in the Delta 88 with electric seats
in the sweltering summer
Apple Beeper spots
scratchy staccato
no reception under the viaducts
the dial stuck in place
and the antenna barely hanging on

They say there are possibilities
that the world is an unopened gift
but for once
it was true that
you had to be there


In that lone car on a straight stretch
of broken Midwestern pavement
so that ten years later
I could recover
the blip in time that cemented us
into that insignificant moment
and I could say to you,
Here, we were here,
it was real,

Tuesday, November 13, 2012

Day 873: Questions to Ask Your Oncologist

I suppose it is some kind of measure of success that I didn't feel like writing about my visit with the oncologist last week. I am down to visits every six months, providing there are no problems. So the next time I see him will be shortly after my next mammogram, on May 7, three days after my three year cancerversary. I can only assume that day will bring me good news, because to do anything else might make me lose my mind.

I was a little nervous before this visit, but not overly so, since I knew he would just ask me questions and feel me up for a while. And we all know that my TNBC is fairly unlikely to recur locally (in the breast), so that's nothing but a fun little dance, really. And so the day of the appointment, I got up extra early and was one of the first in line at my local polling place. I voted in my fifth presidential election, remembering how much I wanted to vote back in 1992. Maybe I should have done like Willow in that Buffy the Vampire Slayer episode and gotten myself a fake ID for that purpose back in the day. But I digress.

I voted quickly, got back home, sent Gabe over to vote, made the kids breakfast, and left the house once he returned. I took an early train so that I could walk the two or so miles to the doctor's office from the train and work some of my nerves out. I feel like such an old-timer at this place, not in the sense of being OLD but in the sense of how rote my behaviors are, like I do this every day. Get visitor's badge, get off elevator, ignore people who are trying to direct me, walk past everyone who is confused in the maze, check in, prepare for an eternal wait for the doctor.

But life is always throwing curveballs in my direction.

I had barely sat down when the male nurse came to take me back to the room. I didn't even have time to look at the newspaper. He took my vitals, and I found out that I am, in fact, really healthy, as usual. I started undressing "from the waist up" before he had even left and he seemed surprised, as if modesty still existed in the breast cancer ward, and I prepared to wait. Again.

And again, it didn't happen. The doctor came in, himself--no physician's assistant this time--about two minutes later. I couldn't hide my surprise. That was fast! I said. He attempted a smile, shook my hand, said It's good to see you.

Oh, how we lie. How we stretch the truth.

He asked me how I had been doing. I said I felt great and reminded him of the breathing issues I had over the summer. I told him they had subsided, but that they came back every month, seemingly with my cycles. Maybe it's water retention?

He frowned at me. That would be an odd reason, he said.

Oh, but baby, isn't everything?

He said they usually didn't get concerned if symptoms eased. I said I had refused the chest x-ray. Much to my astonishment, he agreed with that decision. That's a slippery slope. We might find some little thing and then put you through a bunch of tests for nothing. That happens all the time.

All the while, I was surprised that he remembered everything about this situation from four months ago, even though I had never discussed it with him directly. He remembered the results of my tests and could rattle off which tests I had done without looking at my chart. He asked me if I had any aches or pains. He manipulated me as always and felt my breasts, concentrating on the right side where Gabe thought he felt something, and then he said this:

Your heart and lungs sound normal. As for your breasts, I don't feel anything that shouldn't be there. The rest of you looks great. Do you have any questions?

And I sat there, wondering how this encounter could mean so much and yet last less than five minutes. My main question was about whether or not to take a taxi back to the office. A million other questions swirled around in my brain:

Well I've had these weird pains off and on in my tailbone and my ankle. Should I worry about cancer? Am I just getting old? Is it actually possible that I will get old and my body will start to feel the effects of that aging process just like everyone else? Or am I just, you know, DOOMED?

Why do I have these weird food cravings post chemo? I was always a "sweet" person, not a "salty" person. And yet here I am, thinking about pickles and red onions all day, things I never even LIKED for the first 35 years of my life, and then I wonder if these are normal cravings or dear God am I pregnant or something but wait how could I be pregnant when the only man I have sex with recently got a vasectomy?

And about sex, it's so awesome now, I am like a teenager again, my cycles are like clockwork every 25 days and I have every pubescent PMS symptom in the book, and do you think I will have to go back to that horrible menopause stuff, with the hot flashes and sexual dysfunction and everything else, anytime soon? Is there any way to just MAKE THAT STOP so it never happens to me again? Because look Doc that shit was just DEPRESSING. I don't care how "lucky" I am supposed to feel about everything. I would like to stop time right here right now with how my body feels and works and I know I can't do that, and why can't I do that?

Is it normal for a woman who really didn't drink before breast cancer to have a sudden love for Knob Creek Kentucky bourbon? To get to the end of a day, no matter how boring or stressful or fun and think about capping it all off with that burn on my lips, that booze that somehow just dribbles a bit out of your mouth whether you want it to or not, that feeling of warm haziness? Am I going to hell for this or tempting fate or what? Are the breast cancer gods just aghast, wondering how I skipped over beer and wine and went straight for the heavy stuff when I was supposed to just be living a clean and perfect life, like the one I basically lived before that didn't help me any with this cancer shit?

Is two and a half years enough? When will we ever know how this is really going to turn out? When can I tell my family to stop worrying? When can I stop writing a blog about cancer?

What about PARP inhibitors? What about the fact that yeah I had breast cancer, but PSYCH, not really, because triple negative breast cancer is hardly like breast cancer at all, so maybe all that treatment I took that kicked my ass and put me at risk for long term health ailments was for nothing? How about these clinical trials? I mean I know it's too late for me, but hey doc, do you think there's some real hope for TNBC on the horizon?

All of these thoughts were enough to make my head nearly explode. So I took a deep breath and asked him:

Do I have to come back here?

And he laughed. Of course you do. I will see you in six months. Enjoy your holidays.

And he left. I got dressed, checked out, called my husband, hailed a taxi. Got out of the taxi in bad traffic several blocks from my office, got myself a coffee--the good stuff, Intellegentsia, of course--and went to work. I made the appointments for six months from now for the bilateral mammogram, surgeon visit, oncologist visit. I thought about what it would mean to have made it three years. I thought about how different life can get in a few months, days, how life can just open up before you or seem to close in on you, and you never know what to expect. I thought about all this, and more than a week later, I wrote something about it.

Now I will go back to living in the months between, living in that real space, much like one of my favorite quotes from an obituary about how life and the places where we live it is like the blink of an eye:

She liked to live in the blink.

Monday, November 5, 2012

Day 865: A Worthy Disease

What makes a disease, or a medical condition, worth our time and attention? Is it the death toll? The suffering? The age or race or gender of the people it is most likely to afflict? The marketing gurus who choose to jump on the bandwagon? And what does all that attention really mean, or do, for people who are actually affected by the disease or condition?

I really didn't intend to write this post right now. Tomorrow, I have my first appointment with my oncologist in six months and I'm very nervous about it and I wanted to just write something lighthearted, especially since I feel that my LiveChickenonSix blog deserves some love, but I just haven't had the inspiration to be funny.

Last month was Breast Cancer Awareness month. Anyone who has ever read this blog knows how I feel about that. But this month is Epilepsy Awareness month. Raise your hand if you knew that. I am sitting in a windowless room by myself and yet I'm pretty sure that just about NO ONE I know is raising her hand right now. And yet, epilepsy affects millions of people. And--get this:

It kills more people every year than breast cancer does.

That's right. More than 50,000 people die every year from causes related to epilepsy. About 40,000 die every year from breast cancer. Both statistics are sad and unacceptable. And yet I am in a rare position to say something about the disparity between the ways we look at these things, because, well...I've had both.

I know very well how absolutely devastating epilepsy can be for those who suffer from it or watch their loved ones suffer from it. I have epilepsy on both sides of my family; I was lucky to have pediatric epilepsy that subsided when I was an adult and never caused brain damage or directly endangered my life. The things that people go through with severe epilepsy are terrifying, humiliating, frustrating and sad. Epilepsy can rob folks of their best things--their ability to think coherently, interact with people, create art, read, listen to music. It can destroy brain cells quickly or slowly. It can kill, either from prolonged seizures, sudden death in epilepsy (SUDEP) or seizure-related accidents.

And yet...there is no general sense of urgency about it. When I began telling people I had epilepsy--after my parents convinced my teachers that if I could keep up in class WHILE having 100 seizures a day, I probably could continue to do well in mainstream classes when my seizures were actually controlled--some people seemed confused, or uncomfortable, but honestly, most people just didn't know what it was. No one responded with pity, or fear, no one seemed to think I was going to die. There was no conversation about the poisonous medications that I was given to control my seizures, and even I didn't realize how bad they were (even though one of the medications regularly caused stomach pains so debilitating I couldn't walk when I was 7, 8 years old) until I had my gallbladder removed when I was 26 and the surgeon showed me the picture of my crazily-enlarged liver.

As someone who didn't even really drink in COLLEGE, I wasn't happy with his judgmental tone when he showed it to me. I asked him if he had bothered to read my chart. All those years on anti-convulsants, doc. All those years of blood tests to see if the poison was going to save me or kill me. And hey--I only took those meds for 10 years. Some people take them, and a hell of a lot more than what I took, forever.

People joke about epilepsy, talk about conniption fits and all of that. People forget about it. The connections between homelessness, poverty, unemployment and epilepsy are rarely mentioned. I will never forget when I saw a homeless man who had claimed a suburban corner as his spot begin to have a seizure in the middle of the street. As everyone around me spat out insults about him being a junkie, I realized right then and there why he was homeless.

So there is an insane lack of awareness of epilepsy and there is not nearly enough research into the condition (epilepsy is not a "disease"). And some ways, those facts were helpful for someone like me who had a relatively mild (100 seizures a day doesn't seem mild, though, does it?) form of epilepsy. People didn't know about it, so my family got to frame the message. I looked normal and functioned normally, so I got to be a "normal" kid in the eyes of other kids, even when I had a grand mal seizure in front of the entire sixth grade.

I had side effects. There were limitations on my activities. My parents worried about me for extra reasons. I knew how dangerous driving could be. I was very aware of the water and I never took baths when I was alone in the house until I was 22 and living in my first apartment of my own.

I never, EVER thought that epilepsy would kill me.

Now, listen--I knew that it COULD kill me. I knew that it DID kill people. I knew I was lucky. But epilepsy never made me think about death on a day to day basis.

Enter breast cancer. As soon as you hear the words "you have cancer," you are convinced that you are going to die. I don't care what kind of cancer it is, what stage, how old you are-- that's what you think. You begin to plan your memorial service and get your affairs in order. You begin to think that this wasn't enough time, no matter how much time you've been given.

Then, you start to think about how you will suffer before you will die. I don't care how Pollyannish some claim to be, or how positive the attitude--EVERYONE with cancer worries about this. The surgery, pain, chemo, how fast or whether it will spread, radiation, all of it. You are bombarded with those thoughts. And why is this?

Because let me tell you--everyone ELSE thinks this too. Cancer scares the shit out of people. They treat you differently, cry in front of you, ask you awkward questions all the time, refer to you as "sick."

But I NEVER felt "sick" from cancer. Chemo made me sick. Cancer just necessitated the chemo. On the other hand, epilepsy made me "sick." It changed my daily life. Cancer didn't do a damn thing to me--not until I knew about it.

My grandmother watched a tumor grow in her breast for a year because she was afraid to be told of her certain death from cancer. She lived 11 more years, and it wasn't breast cancer that killed her.

We make movies about cancer and yet in reality, we are so hush hush about it, even with all the Internet oversharing and the support groups. We have this sense of breast cancer as something that can take our youth, our health, our vitality, our sexuality, and our lives, and we live in fear of it. But you know what? There are a lot of other things that can rob you of those things. We should fear the loss, not the messenger. We should accept and admit that some people will live with cancer as a chronic condition and they will die from it, and others will have cancer and will not die from cancer. We should be able to talk about the suffering endured without obfuscating it or making it stand in for the disease itself. In other words--focus on the cancer and the likelihood or not of death, not the breasts or the baldness or the puking.

I am not trying to say that cancer, and breast cancer in particular, isn't serious. Obviously I would not write this blog if I believed that. I actually think it's much MORE serious than the way we treat it with the awful pinkwashing and tit-parading silliness that tries to turn suffering, disfigurement and death into a game of societal beer pong. But to me the worst part of all the pink, after the fact that it doesn't usually actually contribute to research that could help spare women from the vestiges of breast cancer, is that it throws cancer in our faces all the time.

Women fear breast cancer in part because they don't want to be identified with it. Who wants to be "cancer girl?" Can't I just be Katy, the girl who happens to have cancer right now, or the one who had cancer before, or the one who hopes she never has that shit again?

That was me with epilepsy. Katy, the one with long curly red hair, who was a writer, and a tomboy and a goof. Oh yeah that girl, she has to take medication right, she has some kind of seizures or something, right? Epilepsy was like asthma, or diabetes. A bad and unfortunate condition that could be very dangerous and even deadly, but was accepted as a thing that happened. You knew people with inhalers, kids who took insulin shots. You didn't get into it most of the time. It was just a fact of life.

Not like this big C. There's more awareness, sure, but also a hell of a lot more blame (what did you DO to give yourself cancer? What are you going to do to get rid of it?), unsolicited and ridiculous advice from people who know nothing of what you're going through, and uncomfortable FOCUS. So now I am a SURVIVOR. That's fine. Cancer tries to kill you, and triple negative breast cancer in particular is fairly good at it.

But I have survived multiple OTHER things that have tried to kill me. And even when one of those things is granted its own month, there's a collective YAWN. Some things--car accidents, epilepsy, guns at your head that never went off--just aren't SEXY.

Once I was talking about these two diseases/conditions with a younger man and he said he thought that people were able to rally behind breast cancer because, well, epilepsy is just depressing. I just couldn't bring myself to say, what honey, you don't think CANCER is depressing? What books have you been reading and what were you smoking while you turned the pages?

I have to admit though that he was right. We have framed certain diseases, such as breast cancer, as beasts to triumph over, fight, and win. We talk about hope and love and courage and strength. While all of that might be appropriate, it masks pain and legitimate difficult emotions at the same time that it does this:

It allows us to believe that there aren't others out there with similar fights, who fight in the shadows, because no one even acknowledges the enemy at the door.

I have an aunt who has had uncontrolled seizures, requiring an insane amount of very toxic medication, for 35 years. She cannot drive or use computers. And yet she raised two boys and has worked for her entire adult life. The obstacles she has met every day would put most of us, even many of us cancer survivors, to shame. But this fight is invisible. It is so invisible that even when we acknowledge it, we don't. I have told everyone at my spinning studio that I used to have seizures, and therefore I can't be in the gym with the strobe-effect lights(some of the lights have that effect when the ceiling fans are on). There are other lights, and some instructors use them. Others don't, and then it's on me to ask about it AGAIN, wondering how many times I need to mention this since I go there several times a week and have for a year and a half, or, just take my chances and say nothing.

Cancer is not my only pre-existing condition. I have been denied health insurance on the basis of epilepsy as recently as 2004, though I hadn't had a seizure since 1988 and hadn't taken medication for the condition since 1993. I am still not allowed to renew my driver's license without a doctor's permission. Things have happened to my body--from CT scans of my head, toxic meds, and destroyed brain cells, that can have long-term impacts on me.

But who associates me with epilepsy? No, people associate me with breast cancer. These things are so much the same to me, and so different in everyone else's eyes. Cancer is SERIOUS. Epilepsy was just one of those Katy things. But to me, they are very much the same in some ways. I have suffered through these things and I have been extraordinarily lucky--SO FAR. I have always lived with the knowledge that my luck might run out, from either condition, or from something else. I worried about epilepsy in the middle of cancer treatment, with my morbid insomnia or the scary side effect medications that were intended for treating mental illness (but hey! they're good for nausea too!) leading me to pick and choose amongst various evils.

I write a cancer blog because I had cancer recently, might have it now, who knows. I write about it because it is terrifying, and sad. I write about it because I felt that it took some of my best things away. I write about it because I realize now that it didn't. But I think about other things too, all the time, other forms of suffering, other scourges that are silenced in our collective focus on the "uplifting" illnesses.

There are a variety of diseases and medical conditions that affect all kinds of people, and I can assure you that those people usually did nothing to deserve it. Some of those people will suffer greatly from those conditions and some will die. There should be more research into figuring out how to reduce suffering and prolong both life and the quality of life. But let's please stop bringing this "model minority" framework into disease. It helps no one.

I grew up in what one might term "The AIDS generation." I grew up with Ryan White, and fear and shaming, and the knowledge that some gay communities in particular were experiencing a plague unlike any we had ever seen, with multiple funerals every week, and time just stopped for many who lived through that even if the trauma did not. AIDS meant certain death when I was a child. As soon as we began to realize that it could affect anyone, it literally changed our behavior. Some of us became the condom warriors, the 14 year old virgins who bought condoms for our friends if they were too embarrassed, the vice president of the junior class who eventually suggested buying a condom machine for the high school as our class gift, the teenager who drove her ailing grandfather around with keys hanging from a "no condom no way" chain. Some of us became those kids who demanded STD testing of our lovers, who went to the clinic for HIV testing ourselves.

In fact, let me tell a story. It's what I'm good at, right? When I was 24, I dated a man who was 28. I will not even try to tell the entire story of that relationship. Let me preface by saying I did not have unsafe (condomless) sex with him, even though I was on the pill. We were together for a few months. It was dramatic. He had had quite a "past," but was seemingly very normal when we were together.

He died at age 30.

I found this out shortly before my 27th birthday. He died under mysterious circumstances, or at least the circumstances were mysterious to me. We had not been in touch. I was beyond shocked. He was a healthy, handsome young man, he played and coached soccer, he had been so damn ALIVE and I couldn't believe it. I also wondered how and why he had died and I couldn't help but worry.

I went to a local clinic and got an HIV test on my 27th birthday, right before I went on a date with a guy I had just met recently.

It was the easiest and most painless medical procedure I had ever done. And I had done it before, when I decided to go on the pill at age 18. But now I was worried, even if illogically so. And I was terrified. The whole process initiates fear--the way they give you a number, no name, the way they offer you counseling. I mean, when you go in for a pap smear, you think about the coldness of the speculum, the brief pain, you wonder how much you will bleed, but you rarely if EVER worry that you will find out you have CANCER and that you will die. An HIV test? There's death lurking right at the door, even though a lot of times, these days, HIV/AIDS are chronic conditions and people can live long and productive lives with them.

Still, I brought my mother with me to get the results. She drove me to the clinic a few days after I went in the first time, and sat in the car while I went in. She tried to act normal. She didn't ask me lots of questions. I came out, shaking and smiling, and she could see in my face that I was fine. She immediately started crying. How many times had she gone to EEG appointments with me? How many orthopedic visits did she make when I was learning how to walk again? And yet, HIV, as unlikely as it was to affect me (the woman administering the test asked me lots of questions and then seemed totally baffled as to why I was there. You have no risk factors, she said. Well, I dated a guy a few years ago who just died and I don't know how he died and it's freaking me out. Whoa, she said. All right.) just completely scared the crap out of my mom. And I didn't blame her. I realized right then the things that children put their parents through, and the courage it took for her to be there for me in that situation.

What I am trying to say is that some things scare us, in part because they shame us or because we fear what they will do to our sense of ourselves. I have wondered how I was unlucky enough to have the one disease that would take my best thing (my hair) and I have wondered if I will live to be old and I have wondered why my brain keeps working so well in spite of everything. And the answer is that it is a mystery. But this mystery should not be wrapped up in so much mystique, as ironic as that sounds. Let's take the celebrity out of the disease, the Big out of the Big C, the judgment out of HIV/AIDS, the silence out of epilepsy.

The answer is that our best thing is our ability to put ourselves aside, and see other people for what they are, right now while they're standing next to us. Let's see each person as the one, not the one in 8 or one of the 50,000 a year. And if we are still able, let's tell the story, for those who are unable, or unsure where to begin. After all, this life might be an accident of history, but it need not rest there.

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.