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 wonder...kids 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. Just...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.