Saturday, December 31, 2016

Day 2,301: Home


It was all mine. I didn't have roommates. My boyfriend had a key and was there often enough helping me take care of the building that the tenants thought he was the landlord. They thought that about him, not me, though I signed their leases, took their money, planted the flowers, helped to exterminate the apartments, handled their emergencies, tried to fix the industrial-sized boiler with a wrench and a blowtorch that one time. There was a liquor store and a payday loan store on the corner but there was also a bank and a bus line that took me to the green line or the blue line, however I felt that day, though I almost always walked, give or take the weather. The floors in the living room were beautiful but so lopsided my bookcases sloped sideways. The kitchen had counters but few cabinets and we danced in that kitchen since we were too broke to go to clubs. I would sit on the back stoop and watch the backside of the Madison street businesses. I could see men, always men, taking out garbage, shoveling snow, making deliveries. I didn't have legal cable but we spliced the wires that had been left behind and I got a few channels, because back then, that was possible. At 24 I broke my own heart and it was in that apartment that I had to learn to begin dating again, not having done it since 17. I kicked a man out of that place when he didn't want to use a condom, and that's one of the clearest memories I have of my first place of my own: me sitting on the couch in my bathrobe eating leftover popcorn, watching him incredulously walk out the door. I held parties there, albeit small ones. I tried to make friends with my neighbors as white people always did on TV, but I found that wasn't for me. When I left that apartment, my youth stayed behind.


I made $27,000 a year and was putting myself through grad school at night after working all day. Buying a condo didn't make sense, but I had saved enough money to do it, having no debt outside of $98/month in student loans back when interest rates were 7.5%. I found a mistake in the closing documents and wouldn't sign the papers until one of the largest financial institutions in the country gave in following my obstinate refusal to budge, and I was on their blacklist for years. I knew too much about the process. It was a second floor walkup, which means it was the third floor because this is Chicago and we downplay our struggles. When I had gallbladder surgery, my boyfriend at the time came over and walked down flights of stairs to help me with the laundry. There were two butler's pantries in the otherwise tiny kitchen and if I could have, I would have taken them with me to every place that came after. The condo had a shotgun layout, the only place I've lived as an adult that did not have a circular floor pattern. The building was vintage and I had no A/C, washer and drier, second bathroom or parking space. I eventually had a car while living there but I commuted by train and walked almost a mile home at 10 pm on weeknights after grad school classes ended. I rented a garage space a few blocks away and had to walk through dark alleys alone just to get home. I was an adult woman in that apartment, learning to have new boyfriends or lovers, throwing larger parties, refinancing and getting rid of my PMI. I didn't so much as paint in that place, and I made $50k on it by the time I walked out the door three and a half years later. I didn't walk alone; my fiancé came with me. He had moved in when we were 28, 7 months after we met, after we kissed for the first time in that shotgun hallway while he held some of my homemade banana bread in his hand. It was in the larger of the two bedrooms in that place--when I thought it might be better to leave him because he was being such a jerk--that he handed me a pearl ring he had hidden in his pajama pocket and said "I'm sorry, Kate, but I still want to spend the rest of my life with you. Will you marry me anyway?" That was one of many things I did anyway.


A few weeks after we closed, I turned 29, but 28 is precise and true. We negotiated the deal from Puerto Rico, where I had been sent for a conference, and my fiancé came along for fun. The house was an absolute mess in a neighborhood I had never heard of, on the far south side of the city. It was dark and dusty and the beds weren't even made. But there was ivy crawling cautiously up the red brick, beautiful windows, pine trees in the front, a huge expanse of back yard, a woodburning fireplace, and even a magnolia tree. We learned later that the couple who lived there had raised their family with the couple next door, and the husbands one day decided to "surprise" the wives with news of new construction built in the far south suburbs, and the couple who lived in our house almost got divorced, thus explaining why it looked like they weren't trying to sell the place, because she wasn't. It was 2004 and we paid too much and lost money on it in the end but not as badly as others did. When we came home from our wedding, it was still afternoon, and we opened the gifts we hadn't registered for in the living room of the first home we owned together. The day before the wedding, our car was broken into in our driveway. Both of our children came home from the hospital to that house. I designed and managed the rebuild of that kitchen and for that reason I sometimes miss it. We installed a new roof, windows, wiring. There was a steam shower in the basement, and towards the end of our time there, I sat on a stool next to that shower while my husband shaved my head with a bic and a can of barbasol. I became a mother there and with that I met other mothers. I will always remember lying on the couch in that house, pregnant with my son, trying to stay awake for the 2008 election results, and failing. When the phone rang and roused me from sleep, I knew before hearing who had called that he had won, that we would always be able to say that we lived on the south side of Chicago when President Obama was elected, just a handful of miles from where the first black President had once lived. But with hope comes the reminder of struggle and pain. I had cancer in that house--my world split from being the promise of young motherhood and the height of my career to something else entirely. With that, I couldn't feel much nostalgia for a place that held birth but also the possibility of death, new life but also the reminder of suffering. When we left, we didn't, because we couldn't sell. We became landlords, and I was crazy for suggesting we buy the next house in the first place, but we just jumped, and did it.


What can I say? My husband might never forgive me for making us leave. We bought it out of foreclosure, and two of our old houses could fit inside. There were three full sized ovens in the kitchen once he had them installed. We built a second floor laundry room next to the expansive landing large enough for furniture of its own. There were so many windows there were windows in closets, inside the chimney, windows so huge I couldn't even lift them. The space...the space! The sledding hill in the front yard. The library in the hall, the attic that was so far removed from everything else we couldn't hear our children scream at each other. The front porch was screened in and was almost half a city block long. My husband removed snow from the 125 foot winding driveway with a shovel. We could watch the sun rise and set from the third floor, above all of the other buildings in the area. We had a breakfast room and, for the first time, a garage. We held parties for almost 100 people and somewhere down the line, we became known for those parties, which still surprises me. Our porch was a gathering place. We got married there, again--right there in our yard, with the sloping hill of an aisle and a place for every guest. Our children will remember that house as the beautiful one, the one that was a magical place to be a kid, the one with hiding places and enough room in the front yard to go long for a perfect spiral. But utopia doesn't exist, and death crept in there too, as I recovered from an amputation there and struggled through cancer again, and maybe even worse, chemo again. We turned 40 in that house when I wasn't sure if that was possible for me. When we left, my husband cried, my children cried, and I thought I would miss it forever, but I was wrong. I didn't cry and I didn't regret it, even if the rest of the family held it against me. It was a beautiful place to be alone in, to steal away from the world, but the world was always there, and we had to go.


This house is what we were looking for when we left 28 and stumbled upon 35. It is the same in many respects, but with an extra bedroom, a half bath on the main floor, a one car garage, central air and a playroom in the basement. There's a Harry Potter cupboard under the stairs, a bay window in my office, a beautiful yard in a town where those are hard to come by, red cabinets in the kitchen, an open front porch, and way too many problems to fix. It's too small I suppose and we haven't had our first party yet. My mother lives less than a mile away and our kids love the neighborhood and school to distraction. There are no more children to be born, no more milestones of our own to claim, at least not any that don't seem impossibly distant (like our 20 year anniversary or me turning 50. can you imagine? me? 50?). The coming milestones are all theirs: middle school and high school and turning 13 or 16, learning to drive, falling in love, finding themselves. We are so grown here we have nowhere else to go. The house is a house, not a symbol of itself. I find myself hoping I don't have cancer again, period, not hoping I don't have cancer here. My hope is that we are given the chance to leave this place on our own terms, as we have done before, because the kids are done with school and we don't need to be here anymore. I hope we leave together, because we have made it as a couple, because I have made it as a person.

I have moved us again and again and in truth it has been me, I have pushed us in and out of houses. If any of these walls could talk I cannot imagine what they would say, but I will say this: thank you, and I will always remember you and love you and the way you held us and let us go.

Happy new year, everyone. May you always feel at home.

Sunday, December 25, 2016

Day 2,295: Wise Men

Even after six and a half years, I look around and realize I am the youngest person in the waiting room. Women who are much sicker than me, which is most of them, since as far as we know, I might not be sick right now at all, still look at me with a mixture of pity and alarm. It is worse now that I don’t bother to bring my husband with me to my appointments, unless a mammogram is involved, in which case, he isn’t allowed to wait with my anyway. I am 41 years old and nowhere near young, but when sitting on a couch alone, hair so short it isn’t possible to tell if it’s on purpose or not, wearing a Stevie Ray Vaughan tshirt I’ve had for over a quarter century so it can’t qualify as ironic, waiting for the oncologist—and I am confronted, again, by people who regard me as someone who shouldn’t be there at all.

And so I am young, but only because I am in an environment where it is normal to be old, or at least aging. I am healthy, which is regarded with some measure of suspicion, as most in the room are not. I am impatient, while many around me would probably like to wait a while longer to hear the news they are there to hear. I know what is going to happen, and I am not nervous, though I probably should be.

I know that the oncologist will tell me that I look great, that I am doing everything right, and that I should enjoy the holidays with my family. I know that I should feel relief when his three minute exam shows that nothing is amiss. But I don’t feel relief. I don’t feel fear or dread either, because I don’t feel anything. I am not here to learn whether or not I have cancer. I know now that I am likely to discover any solid tumors myself, as I have done twice. I also know that if my cancer has metastasized and turned terminal, I would most likely be aware of it already before I showed up at the doctor’s office.

I know that I am doing this because even cancer is like life, with its obligations and rituals.

Before my oncologist arrives and we dance the dance we agreed on years ago, wherein he forgave me for knowing too much and I forgave him for not understanding that, a young resident arrives. I had been expecting the physician’s assistant I have known for the last six years, and I was oddly looking forward to the small talk.

This woman who arrived instead is young, much younger than me, perhaps in her late twenties. She seemed impossibly new at this. As she began interspersing her medical questions with questions about my life, I realized that someone must have taught her to do this. It seemed obvious that she didn’t really want to know about my recent move, my kids’ adjusting to their new school, the fact that my son hasn’t had night terrors in years, my husband’s new job or our plans for the holidays. She asked questions and I answered them but she didn’t want to know. It was easier for her to ask me about my medications (none), any illnesses or issues (none), irregular bleeding since that D&C three years ago (none), any worries at all? (none? Except that I have a fairly large probability of dying much younger than I should, which is something I’ve had to live with for years, so it doesn’t qualify as a worry anymore…but no one says that, because no one wants to hear that). I briefly wonder what it is about her demeanor that seems so…off…though she is perfectly polite and professional.

It hits me the way only crucial things do, all at once and in such blinding fashion that you are embarrassed you hadn’t thought of it before.

She sees me, and she sees the differences between herself and me, which makes the similarities more striking. She doesn’t have children, a husband, a house, she is working on starting her career, not trying to take a break from it (she tells me these things either directly or indirectly). She also, of course, doesn’t have cancer, once, twice, or otherwise. I have done some of the things she would like to do and a bunch of the things she would not. If I am me, a person who fifteen years ago was like her in many ways, she could be a person like me in the future. I am older than her but not old enough. And as has happened so many times before, I find myself sitting in an exam room, trying to make it easier for the other person on the other side of the table. I feel relieved for her when she leaves.

When my doctor comes in and does all of the things I know he will do in exactly the fashion I expect, I am out of words. I have nothing to ask him, nothing to tell him, except that now that I have moved, we are neighbors, which I know he doesn’t want to hear. Instead of a question or series of questions, I just say the thing that needs to be said:

“I know there’s nothing for me to do, one way or the other. Just keep plugging along.”

“That’s right. There’s nothing for you to do that you aren’t doing.”

There’s nothing we can do, he is saying. You will either be in the 70% of women who ultimately survive this or you will not. I cannot tell you which woman you are. And then, the words underneath the words he does not say:

And what if I could? What would you do differently?

I think about that as I leave, after I make the appointment for my mammogram, wherein I explain in a normal tone of voice, when asked, “so it’s just a right side image you need? Do you have a left breast?” that no, I do not, there is nothing there to image. I think, if I knew how this would turn out, when I was a child, as a young woman, before I had children, or even now, what would I do differently?

And I think I would probably have quit my steady job in an uncertain time, jumped into buying a house before we could get rid of the other one, moved my family, held onto a concert tshirt bearing the image of the man responsible for my first-born’s name, taken the el to the hospital, fidgeted in the waiting room out of pent-up energy rather than nervousness, accepted my own anger as either a character flaw or understandable response to all the rest of it, and, when called upon to say something meaningful, I would have looked at the younger version of myself who didn’t know what was coming, as she wrote notes about a slightly-older woman in a chart naming which cells had gone wrong, and said:

“After doing this for a while, it gets easier.”

On a day when many people think about birth and death and what comes in between, for one reason or another, I leave you with this. I would not have done anything differently, even had I known—especially had I known.

Merry Christmas, everyone.

Wednesday, November 9, 2016

Day 2,249: Make America Great Again

Welcome to Trump’s America. There are so many things to say, but I am only going to say one of them.

Now is the time to rage.

I see it everywhere, on social media, in the so-called elite media, everywhere: now is the time for soul-searching, to hope, to pray, to show we are better, to teach our children love. And I am so tired of it. No.

Now is the time to rage.

We live in a false meritocracy. We live in a society hellbent on the belief that people get what’s coming to them, good or bad. If the world goes to hell in a handbasket, it’s karma. We talk about a revolution, and I am reminded of my Iranian professor in college who looked at a bunch of clueless privileged white students and said, incredulously, do you know what happens in a revolution? A lot of people die. She hadn’t seen her family in 17 years. I hear people say, when it comes to cancer, that your attitude is everything. A smile can cure your cellular dysfunction. I hear people say this about giving our children more freedom, not because they deserve it, but because THEY DON’T NEED IT. People say, but bad things don’t happen that often! Our kids should be happy! And I think, happiness is easier to come by if you don’t have to suffer horrific trauma first.

Bad things don’t happen, we tell ourselves, everything will be fine. But they do, and no, it won't, if we don't make it so. Terrible, awful things happen every day, to people everywhere, to most people. All of the horrible things that just don’t happen? Cancer, rape, child abduction, hate crimes, bankruptcy, the abuser winning, all of the things that seem impossible have happened to me personally or someone I know and love. Suffering is real. Chaos is real. Pain that doesn’t end except with death is real. This is not cynicism. This is not despair. This is not a bad attitude. This is an acceptance of the state of affairs of the world and a refusal to think it can be solved by “thinking better.”

White people are so afraid of losing the privilege whiteness has brought them that they are willing to sacrifice the greatness of their nation to defend a social construct. Men are so afraid of losing the privilege of their maleness that they would rather watch the world burn. The healthy, the rich, those who have never lost their freedom, who are used to winning, have the luxury of saying…I am ashamed, things aren’t as good as I thought they were, this country isn’t as great as I thought it was. Because you know what? It was only great for you. And no, that isn’t a way to segue into feeling sorry for those who feel left out and so voted for a person who will make them feel less left out than others. When the white supremacists love a man, when the KKK endorses a man, when everyone in a long laundry list of not good enoughs is suspect (black people, immigrants, Muslims, women, gay people, Jews), my sympathy is so lacking you’d have to scrape it off the bottom of my shoe.

Optimism has been spun the wrong way. Optimism is not what will save us. What will save us is an understanding that the world is cruel, and the only way to combat that is for people to make proactive decisions to combat it.

I haven’t written much in my blog in the past year or so. It isn’t because I have run out of things to say about cancer. I’m not sure I was ever really writing about cancer in the first place. It was cathartic for me, writing this. But I was trying to say something bigger, something about death, and how it is coming, and how knowing that changes everything, but not in the way you think.

I stopped writing because I was enraged at the state of affairs all around me, all the time, and I wanted to have some friends left, so I kept my mouth shut. I was enraged at white women in my age bracket, liberal women, who were so saddened and shocked by Ferguson and were writing blog posts about how they were starting to understand the terror of being black in America. Instead of thinking we had elevated the conversation, I was thinking, where the hell were you for all the 45 years of your life when this is how the world was? Why was it ok for you to not see it? Every time a man wrote something about how he realized it was wrong for unconscious women to be raped, because now they realized, or had a daughter, I wanted to rage at them for denying the humanity of half the world so casually it was akin to drinking coffee all their lives and switching to decaf because gee whiz I found out it was healthier. All of the “but I believe in the goodness of people” just made me angrier. I believe in the goodness of people too. I believe in the goodness of all the people who are deemed unworthy, whose goodness and humanity are denied every damn day. I know the work it took, the centuries of effort, to strip that humanity away, and I know that it will take a hell of a lot more than hope and prayers to make it right again.

Some time ago, maybe a year, a friend told me she had stopped reading my blog because I was so angry. I was offended, but only momentarily, as I’m not easily offended. And I was not offended for the reason you might think.

I was angry, but not about having cancer. If you read back on the six and a half years of this blog, you will not find any anger over that. I was angry at the injustice of how cancer was framed, at how illness and health are juxtaposed as oppositie sides of the morality coin, at the misogyny in treatment, the corporatization of disease. I was never angry for myself. That is the kind of anger we just elected to run this country. I was angry over the injustice, which is collective, never personal.

I was angry because while I could accept that there are things that cannot change, such as having cancer, I could not accept that there were things that could change that did not because people refused to act. People prayed instead. People chose hope. People bought pink merchandise and ignored research.

If we organize over love and harmony, if we focus on the good of the world, we miss something crucial. Not everyone is loved. Harmony is rare. Good is a choice that can be thrown away.

When my children ask me if I will die I do not tell them of course not. I tell them of course. But hopefully not anytime soon. You never know though. When my son asks me, mom, how many ways are there to die, I tell him…infinite ways. But there are also infinite ways to live. I do not ever say “everything will be fine,” though I sure as hell wish someone would say that to me. I say “things will fit into the world we live in, and I am trying to make that better for you.”

I am not enraged at this election simply because it affirms that a large portion of society doesn’t believe in my humanity. Yes, it grieves me that the message is that I am not fully human because I am a woman, because of my religion, because of my disability, because of my health status, because I have loved and fucked people who were not white or Christian, because my husband has been hungry and homeless, because I have been sexually assaulted, because I might die young and not be worth the trouble.

My rage is not for me, or even for my children, or all of the people I know and love who are less protected than I am because of the color of my skin or the zip code of my residence or my ability to pass as God-fearing if I need to. My rage is bigger than that.

I am enraged, as I always have been, that we have been given this gift, of living in this world with a myriad of people and possibilities, and we choose instead to squander it and host competitions over who is worthy. I am enraged that I am so so tired, I have been through so much over the last six years, and all I wanted was some time to relax and focus on my kids, and now I don’t know what kind of world I am raising them in, so I cannot relax.

And so this is what I am saying, what I have always been saying. It is not enough to want things to be better, to believe in a better tomorrow. It is not enough to want the world to be a better place. We have to know that the world is capable of being a terrible place. We have to believe the people who tell us it is so. We have to recognize that much of human history is the story of people trying to will other people out of existence and the rest of human history is the enraged fight of survivors who refused to let that happen.

Years ago, I gave a speech when I left a job. I was the research director of a small nonprofit working to help people who were underserved by the financial system. And when I left, I felt this need to say that I did not do the work that I did because it was right, because I wanted to help people. I did the work because I had been the people we were trying to help, and I knew I could be one of those people again. If the shit hit the fan, I wanted to be a part of a world that made it harder to stick to the wall. And, here is the punchline: I believed the shit would hit the fan.

Boy, did it.

A few weeks ago, my husband became frustrated with me over how obsessed I was with local racial politics in our old neighborhood. Katy, he said, I thought this would change when we moved, I thought you wouldn’t be so focused on this anymore. Can’t we be happy we are here? That we got out?

I will admit we have been stressed, with moves, and me quitting my job. But let’s face it: that’s just a smokescreen for the fact that right then and there, I wanted to divorce him.

How dare you, I said.

And through my anger and sadness I said what I have been wanting to say, what I have been saying all along, what I beseech you to say to yourselves:

This anger is the only force that ever changed things. This anger has kept me alive. This anger is not a byproduct of my experiences or personality.

This anger is my best thing. It is who I am. How dare you try to take that from me.

And lest you think I am lost, I forgave him.

Welcome back to our America. It was never as great as we thought. Doesn’t that make you mad?

It should.

Let’s get to work.

Thursday, November 3, 2016

Day 2,243: Fly the W

On September 10, 2001, I ambled past a security line that didn't exist yet and made my way to the front row of the first base side of Wrigley Field, so close I could hear the opposition talking in the dugout, with a man who had a child he didn't want me to know about, and watched the Cubs crush a team from Ohio on the night before the ballparks closed and the planes stopped flying.

As a kid, I didn't play baseball, except the one summer, when I won the sportsmanship award, since I had such a good time watching other people care more about the score than I did. But my brother was a pitcher, and when I was tiny, say, 4 years old, I learned to keep statistics at baseball games. This was back when families considered children differently. I had taught myself to read the year before, so they figured I might as well bring a pencil and paper to the game and make myself useful.

At home, my childhood summers were filled with the sound of wiffle ball games and pinners and the Cubs on TV in the background of everything we did. I traded 45 records for baseball cards with my brother and the neighborhood boys. I always wanted to get Ron Cey and Gary Matthews. Who are they? you ask, if you're not from Chicago.

When I was 20, I lived in Chicago for one semester, and one day, we walked from our apartment to Wrigley, on a whim, paid $5 and sat in the bleachers. No one wanted to go to the games then.

When I was 26 I agreed to go to a Cubs game with my ex-boyfriend, and it was a Cardinals game at that, and he had lost a bet and was forced to wear the St. Louis jersey. It was over 100 degrees and we were in the bleachers, and we waited and waited for the game to start, but it never did. There was no social media then, no texting even, but phones started ringing all over the ballpark, rumors started swirling, and soon enough we learned that Darryl Kile was dead, done in by a heart attack the night before, and they called a baseball game off for grief. I've always wondered if we knew he was dead before his family knew.

I had a professor in college who loved baseball more than was probably rational. He visited Chicago a few times every summer just to watch the Cubs play, and I met up with him once beforehand in a Jewish deli where we had pastrami and cream soda. That day, Kerry Wood, who was 20 years old, threw 20 strikeouts, and after the game, my professor called me to say "When I die, I will be able to say that, if nothing else, I saw that happen."

My 10 year high school reunion was held in one of the frat-boy bars of Wrigleyville about a block from the park in 2003. I'm sure the planners didn't even consider that the Cubs would be playing in October. It didn't turn out how we expected; really though, does anything? That night a guy named Steve Bartman reached for a ball, and our reunion, the neighborhood, our city and our collective consciousness exploded in a fit of misplaced rage and endless, gut-wrenching disappointment for so long we forgot what it was really about.

One day I turned around, and I was grown. It happened slowly and all at once. It was now my job to bring baseball to my kids, so one Saturday I took my daughter to a game and inexplicably caught a foul ball hit by Nate Schierholtz, but I thought my hand might break from the impact and I dropped it. She reached down for it and a grown man took it from her, until another man gave him a Chicago look and he looked at us full of beer and sheepishness and regret and handed it over.

A few years later, my husband and I saw a young kid, only 22, hit a grand slam in the first game of the NLCS.

I found myself knowing there was other parenting advice to give, but telling my son anyway that a triple is the best play in sports, because it doesn't exist. I could have told him something about grace and what lessons there are to learn, but instead I told him a triple's just a double and a guy who ran like hell.

That same son is a switch-hitter, if for no other reason than he started playing ball before he knew you were only supposed to walk to the plate from one side and not the other, and we didn't bother to correct him. This year, right around the time he turned 7, he finally had the chance to play catcher on a day that was so hot his coach poured water and ice over him in the middle of every inning, as the catcher's equipment weighed almost as much as him, and he was dripping with sweat and his face was so red he looked combustible, and the team he played was older and slaughtered them until the game was called early. Kids on his team were crying and exhausted and frustrated and I wondered what to say to him when it ended, deluding myself, as parents do, into thinking I had something to teach. He looked at me and said "That team was really good, weren't they? Wow. And mom! They let me catch for four innings." He was all smiles and I knew if given the chance, he would've started right in again.

For years, we lived on the South Side, and commuted several times a year to watch a team that charged too much for everything, considering. It angered us, the money and whiteness of the crowd, the inaccessibility of it all, the greed, and we kept telling ourselves we wouldn't do it anymore, but we lied.

We had Harry Carray and then we didn't have him anymore. Ron Santo died before he was inducted into the hall of fame. Sammy Sosa blew kisses to his mother and thrilled us while he lied and cheated and our hearts broke. Next year never came, someday sat out in the distance. They built buildings for the sole purpose of selling tickets for a chance to watch a team that never won when it counted, across from the only ballpark anywhere built amidst apartments where people actually lived, where you could watch the El speed past, where you could never forget you were in Chicago, no matter how hard you tried.

And because we are who we are, even our hopeful refrain on its best day sounds like an existential plea: Fly the W. It's the sports version of Fats Waller telling us, let's waltz the rumba, because it's impossible, really, but...why not?

Why not?

In a city beleaguered by its own faults and dealings, in the shadow of our tragic violence and corruption, we made a legend of failure in a beautiful canvass of brick and ivy.

For more than 100 years, we followed a game that looked like ourselves, full of unfulfilled promises, scandal, injury, illness and even death, because we couldn't help it, because we knew that any history is the story of the most deserving people never getting to see their dreams come true, because the possibility of winning would be a redemption for our memories.

And then, next year came, and we found ourselves in someday. The night was long and the rain was imminent and we couldn't decide whether to watch or hide or sleep. And then?

We saw ourselves jump with the joy of childhood, this motley crew of us, this multi-racial group of rookies and retirees, immigrants, Ivy-leaguers, and cancer survivors, and at that moment, our reflection seemed perfect.

In 2016, the Chicago Cubs won the World Series, and we were alive to see it happen.

Holy cow.

Tuesday, October 11, 2016

Day 2,220: Don't Die in Fear or Ignorance

Apparently, if one fails to pay attention to one's blog for enough time...such as almost two months...trolls find said blog and begin peppering old posts with comments, mostly of the snake-oil variety in this case. There has to be a special place in hell for people who seek out cancer blogs only to try to sell some "I WAS ALWAYS AFRAID OF BREAST CANCER BUT I GOT IT ANYWAY AND DOCTORS PRESCRIBED CHEMOTHERAPY BUT IT WASN'T UNTIL I CALLED DR HILLARY AND TOOK THESE NATURAL PILLS THAT I WAS CURED 4 LYFE" story. I just deleted about 15 of these comments that have crept into old posts since I last wrote, on my 41st birthday. One of them was even about "weak erections," which I find oddly comforting. I picture this man, with his poorly spelled words and inappropriately excited punctuation, "failing to satisfy his wife" and somehow landing in the annals of the breast cancer blogosphere and feeling at home. We've all had our moments of weakness. It's nice to be needed.

But I digress.

I'm here today, when I haven't been here in such a long time, because someone included the following line in a two paragraph post, complete with email address and phone number, for an herbal supplement GUARANTEED to cure triple negative breast cancer. I was furiously deleting when I saw it:

"Don't Die in Fear or Ignorance."

Ah, yes. Of course. It's really a question of philosophy, isn't it? Is it better to know, or not to know? Is it better to fear things and do them anyway, or never fear and not understand the consequences? Since we all know that death is coming, is it better to think of it often, or not at all?

I'm sure that's what she was getting at, this woman who didn't want me to die in fear.

But because we are who we are, this is the kind of thought that permeates our little household. I wrote last time about how my kids were going away to camp for the first time, to Camp Kesem, which provides a free opportunity to the children of parents who have/had cancer to bond and experience adventure. They dreaded going, and of course, they dreaded leaving.

I saw a change in them both, but my daughter especially, when they came home. She spoke differently, almost like a teenager, she clearly had a crush on one of the college boys who served as a counselor, and all she could talk about for days was camp, and going back, and when she could be a counselor herself. My son clearly loved it, but maybe for different reasons. He didn't seem to find himself so much as he had an opportunity to just play and be crazy without us around for a week. The things he remembered the most were the things they did when they were supposed to be doing something else, like sleeping. I could relate. I always wanted to go to camp, for the freedom from adults more than anything.

But while this was camp, it was no ordinary camp. Every kid there had a life touched, or forever marred, by cancer. I thought briefly about that before sending them, but mostly I was excited about a free week without my children. Gabe and I were like teenagers, going out every night to different bars or restaurants, having sex in the middle of the day, eating pie for breakfast. I'll admit that I didn't really miss them, because I knew I would be seeing them soon, and that they were having an incredible time--as were we.

I did notice something when we arrived at camp to drop them off, however. I stood in this big chaotic room full of people and realized that every adult there either had had cancer or was the spouse or partner of someone who had cancer. I realized that everyone knew this, and no one looked askance at me. The 19 or 20 year old kids--all of whom, I'm sure, have a close connection to cancer themselves, or they would not volunteer their time to this cause--looked at Gabe and I knowing one of us was a cancer survivor, and they didn't even blink.

We were in the place where cancer was normal.

I felt that, and realized I had rarely felt it before. There was no reason to hide nor declare anything about my cancer. It was a fact like the color of my shoes.

Other than that, however, my kids' stories of camp seemed typical of any camp--until my daughter told me about "empowerment." During empowerment, everyone had the opportunity to stand up in front of everyone and tell them why they were at Camp Kesem. I could not believe that my kids actually did this, but apparently, they did. They told me they went up together, but Augie didn't say anything. He let Lenny do the talking--but she wouldn't tell us what she said. She did, however, tell us this:

"Mom, Empowerment was really...sad. A lot of kids there had parents who are dead. One of the boys who was there had his dad die just this summer. He said that he felt lucky, because he had 10 years with his dad, while his one brother only had 8 years and his youngest brother only had 5. Isn't that sad?"

Pause. Such a long pause.

"Well, yes, of course it's sad. I'm sure someone talked to him about it like that, to help him find something positive in it. And it's true. You can think about things in that context. I mean, you're 10. You've already had 10 years with me and I'm not dead yet. I don't appear to be dying anytime soon, though you never know. But it is always sadder for someone else. You can think about luck like that. Sometimes you or your family are the lucky ones and sometimes you aren't."

Gabe looked at me like I was the person who always said the thing that no one should necessarily say, but he loved me anyway. I wondered if I had botched that one, but I don't know how to be a different person than the one I am, so I didn't try to fix it. Then Augie piped in:

"Yeah mom, you could still die. YOU COULD STILL DIE."

He was angry, like I had been holding out on him. I thought he knew that, that he thought about it all the time, but I think being confronted by dozens of kids in real life who had that exact experience made it real for him in a way that made him, well...mad at me. And he's been mad at me in some way ever since. He's been a little bit more incorrigible since camp, and I wasn't sure that was possible. I suppose there could be 100 other reasons, but that seems as likely as one as any. He knew I had cancer. He knew it was bad. He knew it could kill me, even. But I don't think he really knew that meant I wouldn't be there at all, that I would disappear, that he would be a kid with a memory of a parent instead of a parent. And it pissed him off something fierce.

And so there's the question. We all know, but maybe we wish we didn't. There's always a balance of fear and ignorance and stoicism and knowing. There's always someone else who had to learn a harder lesson than you, and not for any reason at all. There's always someone who will know what they know and become introspective, and there's someone else who will know the same thing and become incredibly angry. I don't know what any of that says about any of us--I'm not sure what any of it means.

But I do know one thing. We can all find a way to remain ourselves. And so I answered Augie:

"You're right. I could die. I will die. We all will. But not today. Not yet. So lower your voice. Get out of my kitchen. I have to make dinner."

And instead of scowling, he laughed, and ran off, recognizing me in that moment as the woman who is his mother, not the woman who was.

Monday, August 22, 2016

Day 2,170: This is 41

Today I am 41. Since a few months before I turned 35, my entire range of future vision was focused on turning 40. I wasn't at all sure that I would make it--especially when my cancer came back when I was 37. But, make it I did, and I spent a busy year changing all sorts of things about my life, all while feeling very happy and comfortable with 40.

But now I am 41. And it seems...strange.

It isn't an issue with being middle-aged while still feeling like a teenager. The only reason people say that they feel like teenagers for the rest of their lives is that it is at that point in life that you realize that you really are yourself--flaws and eccentricities and all. It isn't that older people are obsessed with feeling young. It's that youth still begets personality, and that sticks, and once you have some measure of maturity, you realize that you are left with no one but yourself. There isn't anyone else there, nor will there ever be. So it's not that 41 is strange because I should be young still. Too much has happened in this life for me to feel that way. It's just that 41 is older than 40, and I never imagined beyond 40. I never even imagined it before cancer; I always wanted to be an old lady, just so I could fully capitalize on my natural inner curmudgeon, but I could never really picture it. I've said that here before: What would an old Katy Jacob be like? Or even a middle aged one? I suppose with all of the things that happened, I just assumed I wasn't meant to live a long life. I didn't assume that in some maudlin fashion, I wasn't feeling sorry for myself--it just seemed an oddity, the idea of it.

And somehow 41 seems closer to that reality than 40. Now, I can't use 40 as my goal. I have to change the game. If the focus shifts to 50, well...that changes everything. The kids would be mostly grown. I'd have lived a half century. Since I was born in 1975, I'd have lived equal parts in the 20th and 21st centuries. It would be kind of...awesome.

So, I hope I make it. I hope we all do..

In the meantime, I am sitting here in the office of my new house, a day after dropping my kids off at sleepaway camp for the first time in their lives. Following an idyllic week in the north woods of Wisconsin, we meandered through towns with names that made us stop and grin and found our way to a campsite where our kids would spend a week, free of charge, bonding with other kids whose parents have/had cancer as part of Camp Kesem.

Our kids have never spent more than two nights away from us. I have spent longer than that separated from them, due to work travel. But at those times, they were home with Gabe. They were both very nervous about it, Lenny especially. I admit that we are asking a lot of them right now. Let's move, and then a few weeks later, you will go to camp for the first time, and the day after you get back, you will start a new school where you only know one other family.

Trial by fire, as they say.

This is a traditional camp experience, with no communication between kids and parents during the week. We wrote letters to them that will be passed out every day, but our children are very used to having us sing to them, talk to them, read with them. Lenny could not imagine how she would do it, to be away from us and all of her things and comforts. Augie was mostly concerned about not knowing anyone. Gabe was worried about them and about himself.

When we dropped them off, we saw their bunks, toured the grounds a bit, waited while they got checked for lice. Then, some of the college kids who work as counselors (who are these kids? I with a parent with cancer? kids who just really like camp? I'm curious) figured out that our kids were in their groups and took them away, with barely enough time for us to say goodbye. I should say that in this camp, everyone has to choose a camp name. Augie chose Hobbes because of his obsession with Calvin and Hobbes, and Lenny could not decide on a name. We suggested Mercury, because our kids love myths and she's a really fast runner. She shrugged and accepted it.

So we quickly hugged Mercury and Hobbes and started the three hour drive home, meandering through small towns just as we did when we were dating and had no where particular to be. Gabe cried and cried and I laughed at him and that is what we do. I realized then, and today, that I had not spent a birthday without children since I turned 29 (when Gabe and I closed on a house instead). I spent my 30th birthday pregnant with Lenny, I've been in the middle of chemo during two different birthdays in my 30s, all kinds of things have happened...but it was a lifetime ago when I was just myself, not a self who had given life to other selves.

I know I should have cried, but I don't do that. I know I should have felt verklempt at least, or shocked at how the years pass, or raw with my knowledge of how I would miss them, or worried, or...something other than what I did feel.


I felt so happy, and excited for them. I couldn't stop smiling. I don't miss them, because I know they are there, having a wonderful childhood experience without the encumbrance of their parents. What an adventure they will have. What a blessing for them, and for me, and for all of us, that they can walk away from us and be fine, that they are more independent, that they are learning to leave. I love it. I know how that sounds, but it's the truth. Children are just small people whom you have the privilege to live with for a span of time. All that I have wanted, at 34, or 37, or now at 41, is for those people to do and experience things that will allow them to make memories and have longwinded stories of their own to tell. They may have had the opportunity to experience camp because I had cancer, but whatever they take from it won't rely on me being here one way or another. This is theirs to keep.

This is 41. I like how it looks, sitting on the other side of the line I was never sure I'd cross.


Tuesday, July 12, 2016

Day 2,129: A New Start

I haven't written a blog post in over two months. That last one was a bit of a mic drop for me; I think in many ways, I am done writing about cancer (if I ever really wrote about cancer here--this blog has always really been about something else). And yet, I do miss writing. I plan to use this platform for writing about a variety of things, both personal and political. But today, at least one more time, I have something cancer-related to say.

Three years ago today, I learned my cancer was back. Facebook reminded me of what I said that day:

I love my husband. I do. The sitter dropped the kids off and he ran around catching lightning bugs with them while I finished writing. I thought I could handle it and I went downstairs to talk to them and they were playing with play-dough and so innocent and my son's voice is such a little boy voice. Gabe was in the kitchen. I went in there and shook my head and said I can't do it and started crying. He said OK I'll take care of them and why don't you put the dishes away or something. And I was thinking huh you random son of a bitch. But by the time I was done, I was more than finished with crying. And I took a deep breath and went upstairs and put them to bed, reading the super sentimental books about their names that we had made for them when they were born because that's what they asked me to read. And I sang to them and kissed them and I didn't cry. Here's to ten years of finally learning how to distract another person away from her grief. Put that one in your vows. You just might need it.

It's hard to think back and try to place myself there, in that place, having to face my children, again, knowing what I knew. I remember telling them both about my cancer two days later, but I don't remember how it really WAS for me that day. The words above help place me there.

And so I could write about three years, but I'm not going to do that. I'm going to write a bit about how a little girl moved into the house two doors down three months before we were bound to move away. My children have lived in two different houses in their lives, but both are in the same neighborhood. We are leaving the city proper after 12 years and moving back to the suburb where I grew up, where my mother still lives, where some things are the same but many things are unrecognizable. My children are at once excited and devastated to be moving.

One day, shortly after we saw the moving van, an 8 year old girl rang our doorbell. She wanted to meet my kids, who were initially too shy to speak to her. After she left, I forced them to go find her. And just like that, they were gone. Somehow, the three kids bonded like they had always known each other. Like many kids in this neighborhood, she attends the local Catholic school. She and my son immediately began arguing about religion. It didn't seem to faze them, and just became a part of their routine. Her school let out weeks before theirs, and sometimes, I would see her waiting patiently outside, wondering when they would be home.

They disappear for hours and play the way we used to play, back before playdates. They have other friends whom they are natural with like this, but this time, they formed this bond themselves, outside of their parents' influence or the commonality of school or sports. They set up lemonade stands, they play sports with made-up rules as three is an odd number at best, they jump on a trampoline, have water gun fights, go to the park by themselves, bring each other popsicles. When we went on vacation recently, we left a note and $20 with the neighbor girl, asking her to feed our fish and bring in our mail. When we returned, this was left in our living room:

My heart wrenches for them as they are cruelly reminded of what we are asking them to give up, even as I know we are doing the best thing for our family. Children do not control their own lives, and that is a fact we all live with, whether we like it or not. To some extent, none of us has control, which is something I've been saying for years, but is the last thing anyone wants to hear. In this case, we, as parents, made a decision. It's a good one, but we are not the only ones impacted by it. We will all miss this big rambling house on the hill, the house we thought we might grow old in, the house with three ovens in the kitchen and a screened in porch a half block long and a second floor laundry room, the house with its own sledding hill, the house with its light-filled spaces and places to hide. We will miss our friends, but those of us who are grown can always control when we see them again, something our kids cannot do. We will miss a lot of things.

But this? This new friendship, the one that barely got started, is the one that makes me pause. All three of them have known this is the only time they'll have together, this way, to do what they've been doing in secret and in legion with each other. They have one summer together, not even that. It's a season they will always remember. I wonder if they think about it they way I do, if they wonder what will happen to her, how it might have been if they grew up together. I don't speak of this, of course. I just tell them how quickly they befriended her and how that will happen again in our new neighborhood.

I wonder though, and I probably shouldn't. I know that they know all the things that I know. I know that I can't make it easier. I could tell myself that they will forget, but I am past the point where I feel the need to lie to myself or anyone else. I know that there are lessons they will wish they didn't have to learn, and I know that just by living life, but also by specifically living their lives with me, they have always been learning one of the hardest and best lessons they will ever need to learn:

You never forget the people who teach you how to leave.

We're starting something new, and I'm sorry, but I'm not. Here's to the anticipation of our new entrance, and to the most graceful exit we can manage. We all know how to do this.

Wednesday, May 4, 2016

Day 2,060: Six Years Out

Today, my cancer life is six. I'm not sure what that means. What kind of day is this, six years after the day I heard the news that might cut my life short, but also might not, but either way would mean that marking time was important in a way it never was before that day? I don't know. I am not a cancer success story. I found out I had cancer six years ago today. On that day, everything changed. It's true when they say that, but everything is always changing, I suppose. In the case of cancer, what changes is that you never get to be a person who hasn't had cancer. Not three years later, not five, not ever. It's not just things like being ineligible for life insurance for the rest of your life, not being able to donate blood or organs, or having a "pre-existing condition" for the remainder of your days. It's the fact that there's no such thing as "just" a headache anymore. It's the premature age that cancer brings, both outward and inward. It's the slap in the face that some of us have lived with for decades, that death is real and it is coming, but before it does, you have to suffer first.

So I found out I had cancer six years ago. But then I found out I had it again, three years later, and I entered into a hazy world of ambiguous cancer survivorship wherein I would never be a winner, never a warrior, never on the good end of statistics, and for the relief of that burden, I was glad, since we have to find a way to be glad about something on our worst days. I am also still here. I am able to be here without having heard words telling me that I have a terminal illness. I still have a face, and a voice, in the cancer lexicon. Many women do not, because they are dying and will die, and no one wants to hear it, no one wants to hear them.

I do, though. Those women are me, somewhere down the road or with less luck. There is nothing I have done or haven't done that made me deserve to have breast cancer once or twice or any number of times. At the same time, there is nothing I have done or haven't done that makes me deserve to not die from this disease when so many other people do. I wish I believed that I have a higher purpose to serve, but I don't. I simply believe in luck, and science, and, again...luck. I will never turn away from the truth of what this disease represents.

And so, I have lived with cancer and have been lucky not to die from it. Today, my cancer is six. My son is also six. He will be seven in less than a month. He's had a mother like me, hand waving on the other side, for all of the life he is able to remember. He had to stop nursing because of cancer.

He learned to walk without me remembering it. He thrived inside and outside of my body, from my body, when my body was trying to leave me. I am not religious. I do not believe in reincarnation. And yet, it is hard not to think that he has been here before, or at least that he has always known exactly what was coming, and decided to live his life accordingly. Even today, he surprised me. My daughter mentioned a speech another student had recited at school, about winning, and about how life is a competition. I said, huh, is that really true? And Augie said:

No, life isn't a competition. Life is whatever you want it to be. It might be a challenge, especially if you do things to make it harder on yourself, but you don't have to win.

Did I mention that he is six?

My daughter is ten. I've lived to see her grow into double digits. I've lived to see her turn from a preschooler to a child to a girl who looks like the woman she will be someday when I will maybe be around, but maybe not. The things she is interested in doing now she didn't even know were possibilities six years ago. Somehow, I have this child who knows how to teach herself how to do everything. But I guess that's always been the case. She's the one who potty trained herself at two and a half, and we never had to help her, even in the middle of the night. She taught herself to swing on a swing when she was two, she read her first words when she was younger than that, and now she's teaching herself how to knit and God knows what else.

It would be too easy to say that I am glad to have witnessed this growing. Of course, that is true. But it is more accurate to say that I am glad that it has happened, whether or not I witnessed it, because of or in spite of me or without me having anything to do with it at all. The thing about having children is that they are just small versions of adults, and the pleasure in parenting is in living with them and recognizing the people they have always been, all along, even as babies. It is also a pleasure to know they will be those people still, even when we are dead.

And someday we will be dead, and that is what cancer is about--it is the elephant in the room, the death aspect of cancer, the way it shows us the fallibility of our bodies. Cancer reminds us that the corporeal is a snap of the fingers, a sharp breeze against the face, an explosion of brevity.

I am exactly the same person as I was six years ago, except that I have had cancer twice, and that has changed my life. If that sentence doesn't make sense to you, it is because you have been spared certain types of suffering. I think almost everyone knows what I mean. The thing about fear, about realizing that the absurdity of life applies to us, is that we remain us, and we never get to turn into anyone else.

I'm glad for that. I have less hair and one fewer breast and I don't remember things the way I used to, but I am still me. My life is the same in many ways. I have a similar job, and I have worked full time through everything, I have been the one to travel and balance and do what needs to be done. I am still married to the same man, who doesn't seem to miss the hair or the breast, but he misses something else. He rarely says such things, because he is sure to tell me how impressed he is with how I have remained myself, but he has said that my eyes have a different look in them now. He knows I am angry, though I have always been angry. He knows I can't cry, though the other night I tried. I cried for a full five minutes and I hate the feeling of crying, the weakness, the futility. He held me and told me that it was good for me to cry, that in 13 years together, he has never seen me cry like that. He told me to keep going, but I was done. He cries enough for both of us--that's how I see it.

I could talk about what it means to have survived six years, even though I haven't had disease free years. I could talk about milestones. I don't believe in them, not for cancer, not really. What I believe is this:

I have lived six years after receiving a devastating diagnosis of an aggressive cancer that didn't want to leave me alone. Some people in my situation don't live half as long, and others live to be old. I don't know how long I've got, but I know how long I've had. It isn't six years--it's forty. I've faced death five times, six depending on your definitions, but that's just one measure of things. I'm not sure it's an important one. Living isn't a given, and it isn't always easy.

But it sure as hell is preferable to the alternative.

Six years later, I can look back and tell that long-haired woman what she couldn't possibly know then: Six years from now, you will still be here, so don't wait. Don't wait for it--every single day is the beginning or the end of some span of years that mark your life. Just live it. Six years from now, your son, who cannot talk or walk right now, will look at you and say:

Life is whatever you want it to be. You don't have to win.

And maybe, just maybe, you will have taught him that.

Thursday, April 21, 2016

Day 2,047: Nothing Compares 2 U

The world is filled with people who will not be allowed to live out the promise of their lives. The world is also filled with magical thinking, and fantastical dreams, and celebrity worship. It is somewhat disingenuous to mourn those we don't know personally. After all, we are all placed here in a world where everyone we love and hold dear will die--hopefully after we do, but life is rarely that generous. To waste tears on a person we've never met seems false, selfish, bizarre.

Except today, when Prince died, at the young age of 57. I learned this, and all I could think was: No.

I could say a lot of things about Prince, and about how his music and his personality were a constant focus and influence on my life. I was born in 1975. I didn't listen to Prince's debut album until I was a teenager, and I bought a cassette version of it that was dusty even then. Purple Rain was released when I was in 4th grade, and I listened to it over and over. I saw the movie countless times. I asked my parents what the words to Darling Nikki meant and though they didn't tell me, they never stopped me from singing along. I thought even then that Purple Rain would be an excellent song for a funeral, that The Beautiful Ones was the perfect example of a man who couldn't deal with how amazing he was by the time he got to the end of the song. I remember my brother's little league team singing Prince songs on the bench. I went to a party when I was 17 with a guy I would fall in love with months later, whom I would be with for years and years, and the only song we listed to was Kiss, on repeat, while we all danced for hours. I went to college in Minnesota in the mid-90s and Prince permeated the culture of the entire music scene there. My roommate senior year got a job as a cocktail waitress at a club and she served drinks to Prince. I rarely envy anyone for anything, but that one came damn close. My husband and I never go to concerts because we can't accept the cost, the ego, the sensationalism. We went to a Prince concert over 10 years ago, and it was one of maybe four concerts we've gone to in our 13 years together. It cost $50 per person and everyone received a free CD--even 10 years ago, that was the equivalent of buying a Porsche at a Honda Fit price. We had to wait hours for Prince to be bothered to come onstage, but when he did, he brought it. That concert must have lasted four hours. He had a bed on the stage where he would sit to calm down. He played every instrument, he just exhausted himself, the crowd was the best crowd I've ever been a part of for any type of show. I force my kids to listen to Prince on every road trip. I get angry when people are unaware of all the hit songs Prince wrote that he just gave away to other artists because he didn't need them for himself. I will live the rest of my life believing that If I Was Your Girlfriend is the most romantic song a man has ever written for a woman.

I could say all those things, and I guess I have-- and I could say more. But it's not the legacy and influence of Prince and his music that led me to turn to this blog while I am sitting inside on a beautiful, perfect Gulf Coast day on my vacation in Florida.

I really, really, wanted to watch Prince grow old.

I can appreciate that there are some aging rock stars out there who are still doing their thing. Mick Jagger is old, Keith Richards has died and come back to life or is still hanging out somewhere halfway in between, movie stars and athletes I admire get old and keep on trucking. That's a great thing to witness.

But just imagine if Prince had been able to grow old. Here's a man who was short and skinny and androgynous and made everyone assume a sexier person had never lived. Here was a teenager from a troubled background who just went out and decided there was no reason he shouldn't be a rock star, so that is what he did. Here's a man who was famous for 40 years, and never was embroiled in a sex scandal, never was in prison or accused of violence of any kind. Here's a guy who changed his name to a symbol and expected the rest of the world to recognize. And we did, and began referring to him as TAFKAP because we couldn't "say" his name anymore.

Prince never gave a damn. He wore purple before any of the old ladies had ever thought to try. Sometimes, when Prince talked, if you stopped to think about what he was saying, you might get confused. But you didn't stop to think about it, because you took him at his word. Prince wore an orange-sherbet jumpsuit just months before he died and glared at all the fools around him like they were the ones not making sense.

I wanted that man to get old, to stop giving a damn about anything, to show us all how it's done. Contrary to the selfish idea that such a dynamic artist and person is best remembered in his youth and heyday, I'd have given anything to see Prince with grey hair, or no hair, or in a wheelchair or using a cane or relying on a walker. I'd have loved to see Prince bringing us along with him into that good night, in all his eccentricity and glamour and cantankerousness. Even if I am not a concert goer, I have this image in my mind of Prince as an old man, sitting on a stage by himself, wearing an outrageous outfit, bringing his own self to tears with his song. Can you see it?

Life always ends too soon if you've done it right. But this time, it really did end too soon. The world needed a Prince who had the opportunity to grow old. I'd have admired Prince from afar for another 30 years, or whatever he could've been bothered to give us. If Prince had disappeared into the comforts of his old age and we never heard from him again, I would've appreciated that too; I could picture him there in this imaginary self-imposed isolation, shaking his head at our frustration, always in on the joke.

And when we wondered where he had gone, we would mean to be angry with him, but we would not be able to bring ourselves to do it. We would just go out into the world, older and wiser and content but just a little bit sadder, and we would think to ourselves: "It's been so lonely without you here."

But that fantasy is not to be. Thank you for what you did for us, Prince Rogers Nelson. Nothing Compares 2 U.

Saturday, April 9, 2016

Day 2,035: Three Year Itch

I've figured something out. I've been restless and antsy and angry and uninterested. It could be depression, it could be the need for a change, it could be getting older, except that no, for me, getting older is not the cause of feelings of sadness or desperation. I am, in a sense, still desperate to get old. I've never been able to picture myself as an old lady, not even when I was a kid, even though I've always wanted to be one, always, even then. An old Katy Jacob...what would that be like? How would she be? It's seemed like an unlikely scenario for more than thirty years. So, no, it isn't age, at least not in the normal sense. I don't feel this way because I'm 40.

I feel this way, at least in part, because it's been almost three years--again.

Three years is a major milestone for triple negative breast cancer. Compared to other breast cancers, recurrence rates are much higher for us in that timeframe. Once we TNBC ladies make it to five years, our chance of recurrence is actually lower than for women with estrogen-positive breast cancer. But the first three years are, often, actually the killer. I had made it to three years in 2013, received a clean bill of health and even celebrated a clear mammogram report. Within weeks of that celebration, I discovered the new lump--the new cancer--myself. My second official diagnosis came two months after the three year anniversary of my first.

I went through what people in this circumstance go through. I did all the tests required to find out how extensive my cancer was, to learn a little bit more of my fate. I described that process back then, and I think I described it well. It is a harrowing and surreal brand of waiting that I hope you never experience. And yet, for me, given the circumstances, it ended well. I did not have metastatic cancer. My recurrence was a local one. My cancer was not incurable. It seemed simultaneously miraculous and grossly unfair that I had escaped that fate, which could happen to any woman with breast cancer at any time, which could happen to anyone at any time in their lives. And yet, I had been waiting so long for that three years, I had thought that I had made it that much closer to living my normal life again, and then...I was back at the beginning. The clock was starting over.

Or was it? What does that mean? Isn't time just time? The years are the years, healthy or not. People around me grow older, grow up, are born, die. Everything continues to happen. And yet, there it is, in the back of my mind: that notion of three years. I am three months shy of it right now, and keenly aware of how it looms over my consciousness. What if I only have six months until I learn I have cancer again? What have I done in these last three years, what did I do in the three years prior to that, or ever? Has it been enough, have I been worthy of it? The answers are no, of course not, no! It's never enough, and yes, I suppose, though no more worthy than any.

I remember so well, with such alacrity, how it felt to be me, in this space, in 2013, before I knew what was coming. I remember allowing myself to breathe easier and then later telling myself it was good to be breathing at all. I remember how healthy and fit I was, and how little it mattered. I remember letting my hair grow somewhat long, and then wishing I hadn't. I remember still only being able to cry for a minute at a time, but this time, not crying much beyond that at all. I remember telling Gabe that it looked like I probably had cancer again and when he could bring himself to speak and he asked me what I wanted to do I told him I wanted to get drunk. I remember knowing that was the wrong answer. I remember telling my mom, my brother, my children, myself. I remember the absurdity of telling my new boss, of just telling her that look, I was going to have to amputate a body part, recover from that, and start six months of chemotherapy, but that would only push my start date off by a month, so I'd get on the plane and fly out to my new office in September rather than August. I remember making huge decisions about my life, and folding cancer into them--rather than the other way around.

I have no idea what's going to happen at three years this time around. I have no idea if I will get another three. I am sometimes indescribably angry with myself for not doing more with my time. I don't know what I should have done exactly, but what if these years have been the final ones? It's strange to think about that at 34, at 37, at 40, or hell, at 4, or 9, or 24. It's strange what the presence of death does to the concept of life. It's strange what three years can mark when you've learned to mark time in three year increments. It's strange to want something so badly that you dread it coming to pass.

Three years in, three years out, three years on. It's coming, one way or another. I hope I'm ready.

Thursday, March 24, 2016

Day 2,020: Rage Against the Dying of the Light

I never wanted to go gently into that good night. I see eye to eye with Dylan Thomas on that one. But at least, for as long as I could remember, I wanted to rage about something other than simple rage. I wanted to write about something, feel something, do something.

I haven't wanted to write this blog post. I haven't wanted to write any blog post. In fact, I haven't wanted to do much of anything. I don't know how long I've felt this way. Since early this year? My whole life? Now don't get me wrong. I do a lot of things. I get a lot of things done. I have done a lot of things in the midst of circumstances that astound even me, even now.

But I used to have more love for it. I used to have more heart.

I started to realize a vague sense of something at some point this winter. Every day when I woke up, as I said in my last post, I looked forward to going to sleep at night. That's been true for me for the entirety of my life--the fact of living was enough for me; I've always been easily satisfied, content. But this was different. I had lost interest in almost everything that happened in the course of my day--everything that had given me joy: working out; eating; cooking; working; sex; writing. And, of course, I was angry.

I said it before--I've always been angry. It's part of who I am. But this anger has been different. Instead of using it to defend myself and others, instead of it pushing me to accomplish things, to make things different, it was consuming me. It is consuming me. I just didn't see it, because I wasn't getting angry AT anyone, I wasn't doing anything crazy, I was still mothering and wifing and friending and working fairly well. But something has been off, and I knew it, but I didn't know what it was. And then, I read an article about depression in men, and how it often manifests itself as anger, and so doesn't look like depression.

That's me, I thought. Me! The woman whose negative emotions have always expressed as anger was learning what depression looked like for her. Other people, other women, might cry or get their feelings hurt or feel sad or emotional but I rarely feel those things. I stopped crying at some point in my life and I never really looked back. It's not good or bad, it's just how I am. I get angry. And then, my anger passes, and it passes quickly, and I'm me again.

Until now. Until cancer, I suppose, and cancer again, and everything that's happened. I didn't want to write this because no one wants to read this, not even me. Cancer is supposed to leave you feeling like a bad-ass, and though I've written here for years about the flaws in that theory, it's still the accepted practice. I always figured I could be depressed, but if I was depressed because of cancer, I was weak, or somehow doing this wrong.

It's possible that my depression isn't because of cancer. Who knows. I'm not sure it matters. When my son asked to go back to the therapist he saw when he was 4 and I was going through chemo, we were surprised. He didn't say he had any specific reason to want to talk to her, but we said fine, and have been sending him. And apparently he goes, and plays drums and talks about his unresolved anger and, of course, about death. Augie is more open about death than anyone I know. How many ways are there to die, mom? When bad people are in charge, people die, don't they? It feels the same to be six as it does to be 5 but I'm sure it feels different than being dead. In Star Wars, when all those planets blew up, man, I bet there are a lot of people who were glad they were already dead when that happened.

Me too, babe, me too. Who would want to live knowing that was coming? I get him.

So when Augie asked to go to therapy, I thought maybe I should give it a try. I've only done therapy a few times, including once after my car accident when I was 9 (it didn't help), and some couples therapy when we were first married. I didn't know what to expect. I know what my problem is, I just don't know what to do about it: I feel uninterested in everything, I'm angry all the time, too much shit has happened, I've started to not even want to talk to people I do like, I don't feel joy in writing anymore, I'm restless, I still have to do everything in the normal way anyway, oh, and I still have a 1 in 3 chance of dying young, and chemobrain took from me some of who I thought I was.

What could the therapist do for me?

Well, a lot, it turns out. And not because she offered any solutions. But she seems to see me as a person who needs a project, a big thing to work on and do, and she didn't suggest I change. She has helped me see things differently. When I explained that my negative emotions always express as anger, and that I rarely cry, she asked me how I feel when I do cry. That was interesting. I said that I rarely do it, but sometimes I cry, and I really want to just cry like other people do and let it all out, but the tears just stop after about 60 seconds. They actually dry up. Gabe has seen me cry, and he always asks afterwards "is that it? are you done?" I can't change that. I told her that it makes me feel unsatisfied, that the release I wanted wasn't there, that I envy people who can sob and weep. It's like a lot of things with me--I feel like I'm a fine person, I don't feel that I am inherently flawed or unworthy or anything, but I also feel like there's a bunch of things people do that I missed the training class on, like crying and flirting and caring how people view me and being calm and patient. I was ditching class the day they taught those things.

I have been frustrated at my own frustration. I have wanted to rant about the world and about life but I haven't written those rants because even I don't want to read that. I've felt...stuck. I've also felt unable to tell anyone else how I feel, because it isn't the message anyone wants to hear from a woman who has been lucky enough to survive all the different things I've survived. I've always been content with life because I was happy to still be living it. I used my anger to fight injustice and to be productive and to try to make the world a better place because I never believed in fate, or accidents, and I believe that injustice exists, and while we can't help some of it, we can help the rest. I don't work well with the idea that we need to have "dialogue" or cordial exchanges with people who threaten other people's well-being; I believe in the rage brought about by seeing a woman openly heil Hitler at a rally in my hometown for a man who might become President of this country. I believe she isn't welcome here, and she shouldn't be, and I believe in the anger that makes me believe that.

But still, here I am...stuck, somewhat joyless, ambivalent, quiet, waiting for the sun to go down.

I still do the things I need to do. For example, I went with the family to my daughter's volleyball playoffs. They lost. She was upset for a minute that she didn't get to play much, but she wasn't upset that they lost. She tried to make her friend feel better, because she was crying over the game. We hung out for a while afterwards to give the coaches the gifts and cards I had coordinated. Augie was tired and restless. He was angry about something, so he started to slam his body against the pads on the brick wall. He clenched his fists and his face turned red and he pounded his body against the wall like a cartoon version of himself. I looked at him and thought about his outburst of anger the night before, over his common core math homework that for a change he didn't understand (he loves common core math) and that I, in fact, did understand. I told him what he was supposed to do and he got furious. He started yelling and I walked away from him, laughing, telling him he was ridiculous and that he had to go to his room and never speak to me like that. He stomped his feet and I could picture the little clenched fists. He got quiet eventually in his room. Later, he came downstairs and laughed, sheepishly telling me I was right, and he had done the homework the way I suggested. He laughed at himself. He did the same thing at the gym after I glared at him for fighting the wall.

That's it.

I need to learn to do what my 6 year old son already knows how to do. We don't tell him not to be angry, but rather how to manage it, how to let it go, how to direct it, how to not let it get him in trouble. I need that. I need a wall to hurl myself into, I need to just unleash it and let it go, and I've forgotten how to do that, or maybe I never really knew, because my anger wasn't ever like it is now. I've always been like my daughter, silent in my thoughts and feelings when they got too hard, handling everything myself, carrying that weight. I don't want her to feel like I do, though I do want her to learn to use anger.

I'm a highly functioning person. A lot of shit has happened to me, even before cancer. I've kept it together and I don't intend to stop. But I'm depressed, and I'm angry, enraged even, and I can see it now, and I need to work on a solution.

I think I might need to take up boxing.

That's it, folks, that's all I've got. Some words and a notion to rage. Wish me luck!

Friday, March 4, 2016

2,000 Days of KatyDidCancer

After 2,000 days, you might think that it would make more sense to mark time in a different way. After all, even children think in terms of days or weeks, not hours or minutes. My daughter will be 10 years old in less than a week, and I will live to see that day, which is something I could not have foreseen 2,000 days ago when I began writing this blog. For weeks she has been wishing for Saturday, the day of her sleepover party, or Tuesday, her actual birthday. Time cannot move fast enough for her. The days must just drag, time must seem so slow. My son, who is 6, can't wait until spring break, because we will go to Florida and he will see the ocean for the first time. He thinks mid-April should be now, or a week from now, or sometime sooner than it is. I talk to my children about time the way an adult is supposed to: I tell my daughter that she should celebrate being double-digits, but that she should also celebrate being single-digits because she never will be again. I talk to them about high school, as if we all assume that everyone will be there to deal with that time when it comes. I talk to them about themselves in the future--as college students, adults, parents, even.

But I don't really think that way. I still think in a matter of days. I might think about Saturday on Monday. I might think about childcare for the following school year, but the days seem so far away, and I don't do anything about it. I think about dinner--what we will have this week. I think about work in a day to day sense: what is happening tomorrow, am I traveling this week, how many days until the weekend?

1,000 days ago, I wrote a post about 1,000 days. In it, I said this. This was true then and it is true now:

"Over the last 37 years, I have lived two lives: as Katy the person, and Katy the body. Katy the body that other people have wanted, other people have hurt, other people have loved, Katy the body that didn't always work, that so often had to fight, that was always separate from Katy the person. And people who think they know me well can say that the relationship between the two Katys is what makes me who I am, and they will be mostly right. But the body will be taken away, and the person will change.

But this?

No one can take this away from me."

Maybe 1,000 days ago, I knew what was coming. Maybe not. It was four months before I knew that I would be starting all over with the cancer process. I would not be writing now, I don't believe, if my cancer hadn't returned. I would have run out of things to say, as I have anyway, in some sense. I am still years away from any kind of feeling of relief related to my aggressive cancer. In January, 2019, if all is well, and I am five years past treatment, my odds of surviving this go up significantly. That is three years from now. 1,000 days, more or less. My daughter will be a teenager in 2019. While it is true that the 10 years of her life have gone by quickly to some extent, as all parents say, they have also gone by very, very slowly. I have spent days wishing I could speed time up and get to the point where everyone is grown up already and doesn't need me anymore. I would invent a time machine not to stop time, but to hasten it. I never--NEVER--wish for one second that my children weren't growing up, weren't moving inexorably away from me. I don't wish that Gabe and I were 27 again and just falling in love. I don't wish to be a child or a teenager or a 35 year old, definitely not a 35 year old, as that year was just about the worst. I wish these days could go faster. Every morning when I wake up, I wish it were closer to the time when I could go to sleep.

But Katy! you say. That's not how a cancer survivor is supposed to feel! You are supposed to feel a Zen-like love of the now. You are supposed to wish for your children to stay this age forever so that you could savor it. You are supposed to never be depressed, even though that makes so little sense as to be an almost absurd sentiment. You are supposed to go out into the world MORE, not isolate yourself. And I know, I know. I have been, in the eyes of many, doing this WRONG.

It is odd to me that we have come to a much greater understanding of things such as substance abuse, depression, and anxiety disorders in general as a society, but that we seem to have little collective tolerance for people who experience these things due to a devastating diagnosis such as cancer, in themselves or a loved one. For many of us, including those who do not SEEM to be struggling, the idea that we would struggle emotionally or psychologically is often seen as a sign of weakness, of not realizing the gift that cancer has brought to us. It doesn't make sense, but it's true.

I think that the thing that has been hardest for me in the last few years has been chemobrain. It made me feel like someone else, like someone who used to be Katy Jacob and then was not anymore. A forced amputation didn't make me feel like that, being bald and skinny didn't make me feel like that, being sick, possibly dying--none of that made me feel like a different person. Losing my concept of my own sexuality back in 2010-2011 and then losing my concept of my own brain in 2013-2014, were both very very hard for me. I have become myself again, but it is a Flowers for Algernon effect. I have lived with this all my life--the knowledge that everything we have could be taken away and that we might watch it be taken away and know it is happening--but cancer makes this so true, so right there, in front of the face you don't recognize anymore.

I have not had major issues for the most part, though I do recognize the PTSD and general, though not devastating, depression I have had for at least a few years. I recognize that when I was in the best shape of my life, when I weighed 117 pounds and had 17% body fat, it was not because I was fit. Being fit, at least to that extreme, was a side effect of something else. I am still fit today. But I'm much more relaxed. Back then, I was about to lose my mind, and the only way I could stop that from happening was to exercise intensely for three or more hours a day, while working full time and raising a family. I could not sleep otherwise. I would get too close to thoughts I didn't want to have, so I would go to the gym, and not think about anything but the fact that my imperfect body could still do some things perfectly. I was so anxious, and restless, and I have been that way all my life, but that was extreme. I never drank, really not at all, until cancer. I still don't drink, really, but I find myself needing a nightcap in order to fall asleep sometimes, and my one drink a day can't be a glass of wine (I'm allergic) or beer (I hate it) so I go straight for whisky and yes I KNOW I AM DOING THIS WRONG. But I've never done things the way I was supposed to, and I'm too old now to start.

I feel like I have brushed off the changes and the difficulties of cancer in the same way I have brushed off many traumatic experiences in my life. I know that encountering the specter of death five times in 40 years should have changed me, should have made me feel somehow paralyzed or fearful or something, but it has just made me keep going and going just like the day of my possible death could be any day because really, it could. I have just folded all of these experiences into my routine the way you make a change from eating oatmeal in the morning to eating eggs instead. I'm still the woman who sits down to write about how I have lived to see another leap day but finds herself unable to do it so she writes a little riff on Julius Caesar. I still see life like that, an irony around every corner. I'm still in on the joke.

I have not become more reasonable, less stubborn, less angry, or more patient. Stubbornness, anger, and impatience are my biggest personality flaws, and they have just been exacerbated by cancer. My best personality traits, if I have any, are empathy, being able to relate to people, humor, and, I would argue...anger. I've used anger all my life to protect myself and make myself heard, to advocate for myself and for others--I made a career of it, actually. I am angry because I do not believe in the concept of injustice that is earned. I do not believe that injustices, personal or societal, are a given. I believe they are infuriating and that they are often, though not always, manmade. I have stopped writing much here because the state of the world makes me intensely angry, and everything I want to write is a rant, and I figure no one wants to read that, not even me. But I do not feel helpless in the face of this state of things. I feel angry, and anger makes me do things. My family laughed at me altogether when we were watching the Avengers, and Bruce Banner was asked to try to think of something to make him angry, and he just grinned and said "that's my secret. I'm always angry." Me too babe, me too. I'd probably be dead otherwise.

The concept of injustice includes cancer, to some extent...but not really. I do not interpret my own cancer as an injustice that has befallen me. There is no reason it would, or should, happen to someone else and not to me. I do not believe in the concept of a body that "deserves" to be healthy, I do not believe in a "deserved" long life. That is to say, I don't believe in those concepts for me any more than for anyone else. Cancer is an injustice for other reasons. It is not an injustice because it should not exist--I think cancer has always been with us and it always will be with us, though we will hopefully utilize the gift of science to make it less of a scourge. It is an injustice because people fear it so much that it turns people against each other. People do not enjoy the specter of suffering, or, even more so, the specter of death in a person who seems to be as relatively healthy as the next person.

Cancer is an injustice because of what it does to families. I believe that in general, but I'm not entirely sure I believe it about my own family. They all seem to be fine, albeit altered. Lenny will listen to me read a fortune cookie that says "everything is coming your way," and she will say "huh. maybe you'll get cancer again." Augie will believe on some level that I had cancer because I had him. He carries anger with him from those days still, I know he does, because the nearness of death makes some people angry, and believe me, I should know. Gabe no longer thinks of our marriage in terms of assumed longevity but rather in terms of making the most of what we have. My family, my mother, my brother, my friends--they are impacted, I know. But it has not made anyone not be who they are. Everyone is fine, I am fine, I have always believed that--that unless the absolute worst thing that a human being could experience is happening to you, and even if that thing happens, you will eventually be fine, and by you, I mean me. And the worst things have not happened. I mean, I've survived cancer, not genocide, or anything even remotely close. I've survived a lot of other things too, I've experienced a lot of trauma. I maintain though, that people think you shouldn't compare suffering, and people are wrong. There is always more suffering to be had, and it is probably being had by someone who isn't you.

And so, what I end with, 2,000 days after I began to ponder things that are sometimes about cancer, and sometimes not, is that there is something, or many things, that makes each of us who we are. There are things that can't be taken away. My daughter loves to sew and is amazing at it and she did not get that from anyone but herself and it is a gift she will have forever, even if she loses the ability to sew through some tragedy, she will remember being able to do it. Augie's atheleticism or musicality are wonderful but it's his ability to see things the way old people do that he will always have, that will always define him at least in part. Gabe is still sentimental and willing to cry over anything and he always will be. And me?

Well, I am still here, still doing this, still talking at length out into the ether, still counting down the days. I will always have that, whether 2,000 or 20. I'll always look forward not only to the sun coming up every day, but to the sun going down, and everyone being in their own space, apart from me, but out there, in peace.