Monday, September 26, 2011

Day 508: The Beat Goes On






If this blog does anything for me, it shows that time changes things. A year ago today, I was released from the Critical Decisions Unit of the local trauma-center hospital after spending 36 hours there for chemo-related heart issues. That was one of the darkest times in my whole experience with cancer. I remember everything about that hospital stay as if it happened yesterday, from the conversation I had with Gabe about using my life insurance to pay for a nanny for the kids, to the kind doctor who attended to me and brought me some much-needed faith in the overall humanity of the medical community, to the realization of how immodest I had become in my new starring role in the Katy SciFi show, where I was bald, with fingernails painted black to try to stave off the chemo-rot, with heart monitors and patches all over my chest, reading a book about genocide in Rwanda and wondering if I was trading early stage cancer for a permanent heart condition.

And here I am now, with no more sense of the answer to my question than I had then. I have no idea how well my heart is working except to say it seems to be working just fine. And I have no idea if there is cancer in my body, though I can't imagine that there is because the concept seems too unreal, even to me, a person who has already faced the reality of multiple, insidious tumors growing inside me. I don't know, but I'm just assuming I'm all right. After these 500 days I've started to assume that I am actually a cancer survivor, that chemo didn't permanently alter the inner-workings of my heart, though I know it is too early to really say.

I've heard about breast cancer survivors who get multiple MUGAs all the time to assess the performance of their hearts, I've seen pictures of women going through AC chemo whose hearts were continuously monitored during the infusions. Not so for Katy. I never had any of that, just as I have never been offered follow-up blood tests. I guess this should disturb me, but in general, I just want to believe I'll make it. I left that hospital a year ago, ingested beta blockers every day for the remaining month that I did chemo, took myself off them, never followed up on my heart issue except to take Zyrtec when Taxol gave me heart palpitations, and have tried to not look back. My heart seems to work, but how do we ever really know what is going on inside of our bodies when we can't see it? The trouble is, you don't know until there's a problem. I felt wonderful until I found out I had cancer; hell, I physically felt just fine after I found out. You wake up in the morning and walk around and go about your day and just take it on faith that you can do these things, because, well, you are doing them. My heart must be working, because it hasn't stopped beating. I'd love to say the same about cancer--it must not be in my body, because I feel so opposite of what we assume it feels like to have cancer that it can't be true.

Cancer, heart conditions, epilepsy, many physical disabilities are ironically these insidious beasts that you often can't see. I have received so many comments in my life that start with the following statement that sometimes I feel that my goal in life should be to prove that appearances are deceiving: "But you don't look like someone who...":
has cancer; should be in a wheelchair; is so smart (a few guys have actually said that to me); recently had a baby; has seizures; does economic research; is in her thirties.

So who do I look like if not myself? How can anyone look like anyone else, and what are you really supposed to do with any of those statements, those supposed compliments that, perhaps unwittingly, deny some aspect of who you are? A year ago, Gabe said something to me like, you don't look like a sick person at all, you don't look like you have cancer or a heart condition. You just look like you, bald. Because you are just you, bald, doing cancer treatment. You're not sick. It's weird.

And he was right, it is weird, isn't it? It's weird how we can't get away from ourselves even when we feel like our selves have gotten away from us, that our bodies have betrayed us. Perhaps that's some kind of goal in and of itself, to be yourself completely, even in a state when you feel like someone else entirely. Because you don't have the option to be someone else, it's ok if you feel like you're faking it.

Today I was managing a conference at work, and I looked around the room, which was 90% men, and I was one of the youngest if not the youngest people there. And though I should have been thinking of other things, I found myself wondering, how did I get here? Am I really some kind of expert on payment systems? Is my work life a real thing, is this really me? People seem to like me and respect me in this environment, they seem to believe I know something, and perhaps I do, but then why do I feel like I'm just making it all up as I go?

In my role as moderator, I didn't know exactly what to say, so I spoke about the Fed's interest in payment system efficiency and integrity and payments governance. Then I said that I didn't think we should feel too bad that we didn't have all the answers. I related a story of how when I was walking into the Fed this morning, a very aggressive protester got up in my face asking me "Did you vote for the war? Huh? Did you?!" And I said to the audience at the conference, if there are folks who believe that the Federal Reserve, or me in particular, makes military policy, we shouldn't feel bad about being confused about who is in charge of something like payments. This got a lot of laughs, and some people even clapped. My strange confrontation in the rain made that little moment possible, and I couldn't have planned that.

A little later, one of the very few women in the room (hello? if we've made strides in equalizing fields where men and women work, I'd like to see the evidence) was talking to me about the event and then suddenly said, your hair is so cute. It's so daring. Huh? I asked, looking enviously at her very stylish short haircut. Mine is so average, she said. You're much more chic. I said thank you, but I thought, this is chic? This is sticking a barrette in my hair and tousling it after the shower because I have no clue what else to do and figuring, what the hell, it's a step up from bald so let's just walk out the door. And then I thought, this is how I know I know something about this--because I can just wing it, and it turns out ok anyway. I can use the story of what just happened right before I entered the building and it can sound relevant. I can be lazy about my hair, and somebody out there will think I spent money to get it to look like this. If I play it off well enough, enough folks will think I planned the whole thing, whatever it is, that my life will look purposeful and knowledgeable, which, in turn, might actually be true.

That's what I'm trying to do over here in general, I guess: be comfortable enough in my own skin that I can just wing it. Hell, maybe that's the only thing I've ever been able to do. I can sit down at the computer with no idea what I want to say, except that I want to comment on where I am today compared to where I was a year ago, and in the end it sounds like I had some kind of message, though I'm not sure exactly what it is.

It goes back to the old theme, the need to be able to see yourself as if you are outside of yourself. At the start of my diagnosis, when I was deep in the sorrow of losing my hair and potentially my breasts, a few people who were close to me told me that the characteristic that most defined me was not my hair, but my big black eyes. I didn't believe that then, and I don't necessarily believe it now, but perhaps I should take their word for it. Maybe the eyes show something: that weariness and acceptance from a year ago, the relative contentment of today. Back in those early cancer days, someone said that the "killer" thing about my eyes was not the way they looked but the way that they looked when they're looking at things, and that wasn't going to change. What a wonderful thing to say; what could I say in return? Well, I can offer that if eyes can show anything, it's just a reflection of what they see, of the world. So it's not me, but the world that I see and the life I've been able to live that is interesting, that is worth reflecting on. I like to think that I see the world as it is, that I'm comfortable enough with myself and this strange vessel and this convoluted mind that I can show my hand, reveal myself, without worrying about losing too much. So I guess I'm just writing this blog today to say that as long as it's still beating, I'll keep wearing my heart on my sleeve, or at least on my face. It's easier to see it there than inside of this strangely distorted chest.

Saturday, September 17, 2011

Day 499: Fight Like a Girl




Wow; writing that blog title was strange. Today is the 500th day of knowing I had cancer; I started writing this blog the day after my diagnosis. I guess the one thing that can be said about cancer is that it's often a slow-moving beast, even when you have a fast-growing, aggressive type like mine. Cancer was growing in me for an estimated three to five years, and there I was, nurturing other human beings in and from my body, using my body to the best of my ability, living life. Other diseases can do you in a lot quicker, I suppose. I'm thinking about this because we went to see Contagion last night, a movie I swore I wouldn't go see, because of the mass death of children, focus on disease and treatment, and the fact that if I'm going to pay $60 for a movie since I need to pay the babysitter it had better be the best damn movie of my life.

But we ended up there anyway last night, since it was too cold to go to see a high school football game, our dorky date of choice for a Friday night. Can I just give a shout out to high school football games? When you're actually in high school, maybe it doesn't seem so great (actually, it did, when I was there), but this is one of those things that is just stopped in time and is still fundamentally awesome, even if you don't know a soul on the field. It's still $3 for a hotdog dinner, it's still beautiful in the fall and you don't even have to talk to your date because you're watching the game, and there's a band and halftime entertainment and just the people watching alone, especially all of the insufferable posturing of teenage boys, is worth the price of admission. We went last weekend and we could've walked the few miles to the game, but we were testing out our new 13 year old next door neighbor babysitter so we didn't leave early enough. We had a blast. As another aside, here's a shout out to the neighbor kids too. I'm in the office looking down into my yard and there's the 11 year old neighbor who is the quarterback on his little football team yelling things like "go straight down the middle Augie!" and patiently watching as my two year old son and five year old daughter run around like fools having the time of their lives. And it was his idea no less! I love it.

So the 11 year old's 13 year old sister watched the kids and we got a quick beer and then went to see a show. I was so prepared to hate it and be supremely disturbed. Granted, it's rough at the beginning, but it's so clinical and everything happens so fast that you don't even have a chance to feel sad about any of the individuals. There's actually one scene that's funny. But damn, they title the scenes just like this blog, in number of days, and by Day 100 or so, millions of people are dead. And though it's not at all related, since obviously cancer isn't contagious, I have to give the movie credit for making me think about things a little differently.

I remember very clearly when I reached 100 days. I was so deep into chemo, and it was a week or so before my 35th birthday. I don't mean this as any kind of slight to people who have cancer and don't do chemo for whatever reason, but sometimes I feel like if I hadn't had to do chemo, cancer would've been just a blip in my life. My way of thinking about cancer is directly linked to my experience with chemo. Yes, the fear was there, the grief and disbelief, that was all there pre-chemo. The surgery was shocking for so many reasons, especially since I had to do it again. Not knowing my BRCA status, my stage, yes it was all a nightmare. Radiation was no walk in the park. But I knew the moment I was diagnosed that I would need to do extensive chemo, and damn. Chemo--it did things to me I didn't know were possible to have happen to a living person. I know that sounds dramatic, but for this woman whose body rejects most drugs, it's the truth.

And yet. How much better it must have been for me than for people who tried the first chemotherapies as human experiments 30, 40 years ago. This was back when no one knew if chemo could be effective, when the doses were extreme and the protocol was to do it for an entire year regardless of your stage or type of cancer. I kept thinking about this as I was watching this film full of great actors, some of them pretending to be doctors or scientists searching for a vaccine for this disease that killed people almost before they even knew they were sick. This thing moved so fast, you hardly had a prayer. I loved the juxtaposition of the conspiracy theorists in the movie, who are convinced that the government is in bed with the pharmaceutical companies; some believe the disease is made up, others believe the purported cures are fake. And everyone here knows how I railed against chemo, how close I was to quitting, and how I questioned whether or not I was trading an early stage cancer for some kind of unknown lethal side effects, other cancers or heart disease down the line, etc. I was definitely a chemo-hater. I still am. I'm still glad I didn't take the side effect drugs, that I did acupuncture instead.

But I'm also glad I did chemo. Now that I know what I know, I can see that I came back to myself after all of that. I feel just as young, fit and healthy as I ever did. What does this mean? My chemo nurse told me at one point that the chemo was affecting me so severely that I at least should take heart and know it was working. Now I look at it like this: My body took that. What a punishment, what a beating. And now here I am, almost like it never happened. Score! When one character in the movie last night was talking about how no one knows what the side effects will be of the vaccine, I thought, no one gives a shit. You would take it anyway given the carnage. You would rail against the vaccine, and against chemo, and you would do it anyway, because you would have some evidence that it worked for some people before you. How brave those people must have been in the face of all those unknowns! How glad I am for them, so that I could have this one chance to fight this triple negative beast.

Ah, triple negative. The status of my cancer that makes me wish the internet didn't exist. I found some blog today, written by an MD who specializes in breast cancer, which stated that the test that they do to determine hormone receptive status for breast cancer is wrong 10-20% of the time. It is only wrong in one direction, apparently: some significant minority of women who are deemed to have estrogen negative cancer are actually estrogen positive, and yet they are denied the drugs like tamoxifen that could save their lives because they are never re-tested.

Boy, did I not need to read that. On the one hand, I am so grateful I don't have to take any more drugs, so glad that I don't have to have artificially-induced menopause anymore. But it makes you think. What if that is the reason that recurrence is so much higher for triple negative women, that the mortality rate is higher? Is it because they're not triple negative at all, they were just denied the right treatment?

It could make me angry, it could make me paranoid, it could at least make me ask for another test. And yet, I mostly just think, well, in reality, they are doing their best. Don't get me wrong. There is a lot of B.S. in the medical industry in this country, a lot of politics and way too much money wrapped up in it. There is a lot of sexism, a lot of infantilizing of grown women, there's a lot of shit, that's for sure. But most of the time, I think individual doctors and nurses are doing their best, knowing that they know nothing, even when they act like know-it-alls.

Contagion brought me to this thoughtful place, but I have to admit that the reason I get to be contemplative about chemo is that I'm not in the middle of it anymore. Back at day 100 I just thought oh please God, not again. Don't do that to me again. I couldn't get reflective about it when it was knocking me on my ass. But who was I talking to? I was the one who handed my damn arm over every two weeks. I was the one who kept going back.

I don't know what precipitated the desire to write this blog, but for the need to acknowledge that I actually think science is cool, and that it has aided my life in some very real ways. I also think it's important that science is no science--there's a lot of guesswork, a lot of mistakes, and maybe those of us who need to rely on it at some point in our lives just need to accept that.

When I dabbled with being an animal rights activist in high school (that didn't last long--I'm way too people-focused, and everyone knows I'm no pet person), I just couldn't get behind the whole no-testing-medicine on animals debate. I was taking Depakote twice a day, after all, the drug that poisoned my liver and that simultaneously allowed me to live a normal, seizure-free, life. Even after all the testing that had been done before me, that drug was toxic as hell (I don't understand why drugs like Depakote are prescribed so widely today, for all kinds of conditions, when they have such potentially devastating consequences). Of course it couldn't have been tested on humans first. It's hard to admit that, but it's true. Animals died, people suffered in the early stages of prescription, but, for me, it was worth it. It worked for me, amazingly, and I blended into the world fairly effortlessly. Wouldn't you want that for yourself, for your children? You could say otherwise, until you're confronted with some other reality, and then you're willing to try anything.

Well, almost anything. I wasn't willing to enter a clinical trial and try Avastin, which had no expected benefit for someone with my type and stage of cancer, but had unbelievably disturbing potential side effects. (In a controversial decision, the $100k a year drug was taken off the FDA's approved list for breast cancer treatment very soon after I started chemo). But no one would argue that chemo isn't toxic, especially adriamicin and cytoxan. Taxol's not much better. If something can destroy the nerves in your body, obliterate your ovaries and rot your fingernails right out of their beds, it's no joke. But if it can kill your cancer too? Well, it's debatable for some, but as I sit here feeling entirely like a healthy and happy 36 year old woman, it sure seems worth it.

I never thought I would say that. While I was in it, it was so horrible. Life is like that though--as they say, this too shall pass. The hope is that you will be there to look back on it, that the experience will pass on, not you. So far that's happened to me. I never thought I would say that I hope I am truly triple negative either, but I do hope the test was right. If it was, I can say that I did everything I could do (except for the fact that I've been eating too much good food recently, and I swore I would avoid fatty things, but now that I can eat without vomiting or having hot flashes I am just loving it. 118 pounds here I come!). If somehow the test was wrong, well shit, it's not good for me to be getting these periods now is it? But at some point you have to stop second-guessing and just accept it. We're all doing our best with the information available to us at the time. You can't get lost in the possibilities.

Way back at the beginning of my cancer diagnosis, I got a call from the mother of my best friend from high school (my friend sent me this shirt that I'm wearing in the pics, and another Fuck cancer one, which isn't my style, but now that I'm out of treatment I think this one is cute). She had had breast cancer herself. We talked for a bit and she said one of the most human things anyone said to me at that time: "I know you'll do your best, Katy." Not, I know you'll beat this, I know you're a fighter, I know you'll live, I know you'll kick cancer's ass. Just, I know you'll do your best. That's the only thing you can do, and I do think I have done it. Maybe they'll know better by the time Lenny's grown. Maybe fewer women will get breast cancer at that point. Maybe I'll even be around to find out for myself! And if not? I did my best.

Maybe that's what it means to fight like a girl. Don't expect to win, don't get cocky about it, don't shove your victories in anyone's face, don't think you got there on your own, and don't thump your scarred-up chest too early. Fight like a girl, and see what you can learn from the game. Just do your best.

Monday, September 12, 2011

Day 494: The Kiss and the Story






For the last eleven days, I have had no inspiration whatsoever to write this blog. Of course, I didn't really write a blog on September 1 either; I just wrote that poem and posted it and decided that would suffice. I started thinking that maybe there isn't anything left to say, so I could forget about it for a while and just lounge on the couch and watch some football, (see what the kids learn from me? Some kids might mimic their mom by playing dress-up, mine sprawl all over the couch during the game), cook some comfort food, and do other run of the mill things.

So why am I sitting here on a Monday night, contemplating writing one of my deepest blogs yet, while watching the game? Well, in part because I can't imagine NOT watching Monday night football if it's on, no matter what, but mostly for two important reasons.

One is that yesterday was the tenth anniversary of September 11. I am not going to attempt to connect the events of this blog with the events of that day. As I will discuss later, I don't take myself that seriously. But I do read the newspaper, and I read the coverage of the memorial services in New York, Washington, and other places. There were so many moving moments, but the one that got me the most was something a teenage boy had written for his dad, which went something like this: "I still miss you, dad. I wish you had been around to teach me how to drive, how to ask a girl out on a date. I hope that my brother and I became the kind of young men you would have wanted us to be."

There really isn't anything for me to add to that, and most people reading this will know why that makes me tear up, beyond just the given feelings of empathy. The second thing that happened is that an old friend and colleague posted the following link on Facebook about Dignity Therapy for the Dying (this is what I love about facebook, that you get to see what other people are thinking about, out of context, and yet it makes perfect sense and you remember what you like about those people, even when they literally live halfway around the world): http://www.npr.org/2011/09/12/140336146/for-the-dying-a-chance-to-rewrite-life

All of a sudden, these two passages converged for me. What is so poignant about all of the memorial statements for those who died on September 11? Well, one of them is the way that loved ones talk about the sudden nature of all of those deaths and the lack of closure. News coverage mentions a woman and her 23 year old sister, a man's 29 year old son, someone's 67 year old mother. But those are their ages stopped in time ten years ago. The present-tense nature of the way these things are portrayed is a brutal reminder that those people did not have the chance to age another ten years, and no one saw it coming.

While everyone who dies is always eternally placed at the age they reached before death, I think it's even more significant when you die suddenly or when you are the subject of unexpected news. That child will always be 29, that life will always be cut short. We conflate this and bring it into our everyday lives. I know that one of the reasons that the friends of my childhood and my youth are so affected by the story of my cancer is that I am literally cemented in their minds as the age I was when they knew me or saw me last. I know that I would feel the same way.

Recently, my mom brought me a few of my formal dresses from high school, thinking I could fit into them. My favorite dress was a vintage, rose-colored dress with a beautiful back that I bought for $35 on the north side somewhere. I couldn't believe I could fit into it. Haven't I had kids? Didn't my hips finally expand when I was 20? Didn't I grow an inch and a half in college? (Alas, the only thing stopping the dress from fitting comfortably is that my damn rib cage grew. It even fit better on my behind, I didn't even have to suck in my stomach, but that ribcage must've expanded somewhere down the line). I know that if my boyfriend at the time or someone else from that era saw this picture of me wearing it now, they would think, that's Katy! 17 years old, in 1992. Because I will always be Katy, 17 years old, in 1992, to some people. That's just how it is. The things you are go back to the way you are remembered.

But it doesn't have to be so static, and that's what's neat about life. If your only sibling dies, are you an only child? You might think you are, but you will never be an only child, because you and so many other people have all the memories of you being a sibling. And if you are alive in the world, you get to age, and people who see you as stopped in time somewhere in your past just have to deal with the fact that that image isn't real. But if you don't get that last glimpse, that closure, if you don't get to see that body or bury that person, time and memory can play all kinds of tricks.

This contrasts so completely with the subject of the other piece, which focuses on the actions of people who know they are dying, who have time to prepare. Normally, when the cheesy question of "what would you do if you knew you only had x amount of time to live" arises, no one gives the option: "I would sit down and write about my life so that I could be remembered and the whole thing would seem real." And yet that is probably the only really true answer that a person could give to that question.

What do these things have to do with me? Well, nothing, really. I don't think I'm dying, not right now, anyway, but having cancer does bring you that much closer to death, or at least to thinking about death. And it makes people say things to you like, well, you might have cancer, but you know you could get hit by a bus tomorrow, we could all die at any time. And you want to smack those people, because of course you know that, and actually you were hit by a car, thank you, and you did have a gun at your head, and you almost died from an allergic reaction to penicillin as a baby, AND you had cancer, so clearly none of these things precludes the others. But the difference is that cancer gives you time to think, to reflect. When my grandmother knew that she had a breast lump when she was 75, she let it go for over a year. She was too terrified of cancer to get it checked out, thinking that having cancer meant that she would die. Her doctor sighed and told her, no Marthagene, it's not like a heart attack. Cancer won't kill you just like that. You have to suffer first.

She suffered more than she needed to, and she also lived another 11 years and died of other causes. But I digress. These two pieces of media converged in my convoluted mind and I thought, isn't that what I'm doing here, isn't that what this blog is about? I have enough presence of mind to realize that even if triple negative breast cancer ultimately does me in, I am alive now and will be for a while. I have time to tell my story. I have always admitted that I write this blog in part as a love letter to my kids, so that they could know me if they miss out on the real, corporeal me. I have also stated that I am doing it to make this real, so that I know that all of these things really happened, because I wrote about them and somehow that makes them true. If not for this blog, morbid insomnia might be some kind of off-color joke, that head-shaving experience might be some kind of dream Gabe and I had in the basement of our old house, and this relatively normal life wouldn't seem quite so marvelous.

I wrote it, so it must be true. I told the story, so it must have happened. Telling our stories brings us back to that basic aspect of ourselves, that somewhat desperate innocence. I knew I needed to write this blog after meeting our new young next door neighbor, a boy who is about ten, who spent at least an hour telling our entire family all kinds of stories, mostly small (life is so detailed at that age!). I realized how important it must be to him to get those stories out, even to us. It was also important to him that we believed him, as if he expected that we wouldn't believe the story he was telling us--about himself, and his life.

And it's important for your life to seem real, to be true. Every once in a while Gabe tells me that I got some detail wrong in this blog. A few times I will reflect back and say, yeah, I guess that happened at a different time of day, that event actually happened before the other one, not after. Other times I look at him and wonder what world he is living in, where he clearly experiences everything in a fog, because I know, I just know, that the way I remember it is true. And I'm sure he feels the same way.

Why do we have this need to tell our crazy stories? Why the task of dying, as the article reveals, that forces us to take stock and come to terms with what we've done with our lives? Are we narcissistic enough to think anyone cares? I remember when I was fresh out of an extremely painful breakup, I said to a friend that the last thing I wanted was to become one of his stories, or even many of his stories. And she looked at me thoughtfully and said, why not? I know it hurts now, but what is wrong with that? That's what happens to all of us, and it's an honor to be someone's story.

Don't I have insightful friends! Of course, she was right. It is equally important to be an actual part of someone's life, but if for some reason that isn't possible, how wonderful to think that someone thinks of you when they could think of so many other things. Perhaps being a part of the story is the whole point. Maybe we need to take ourselves much less seriously, think of ourselves as just part of the play, and try to entertain the audience.

But who am I to give advice? Here I was a week or so ago, entertaining some teenagers at my house, though I was sure they should have had something better to do, and I wanted to laugh at myself as I played at giving advice, as if I know anything at all. At one point I found myself telling them not to take themselves too seriously, not to think that everything matters so desperately. But of course it does when you're 18, right, and death is so far away! Your life is such an important thing, your decisions matter, your love is the only one. And yet, experience does teach you a few things.

I have very few regrets in my life, since I have always laid my cards out on the table, even when it was embarrassing, even when it made me look weak. And different things that I've survived or experienced have taught me not to take today too much to heart. In the middle of wondering why parents in Chicago need to spend a few extra work weeks of time figuring out where to send a child to first grade, I thought, does it really matter? When I was out of school for months after my car accident, I had a tutor for one hour a week--that's it. All we did was math. I liked other subjects more and asked her about reading and social studies and science and she said, you are smart, you can read, you won't forget those things. I pressed her, and she said something along the lines of "It's fourth grade. It doesn't really matter. You'll be fine." And when I went back to school it was as if I had never left.

As I was talking to these kids and thinking about how deeply you feel everything when you are young, I was brought back to the time right before I left for college. I had started dating someone, even though I knew I would leave and move 400 miles away a month or so later. One day we were at his parents' house lying in bed and he asked me if I wanted to go out. No, I said, this is nice, let's stay here. And he said, no--do you want to go out with me? Do you want to be my girlfriend?

In a moment typical of my own innate romanticism, I responded, sure, but I have to go out with this other guy first.

At the end of the day, I dated that guy I had known for a hot minute after high school for more than six years. But who was this other guy, the one I had to go out with first? Well, he was a boy I had always liked as a friend, and he seemed to like me. He played football, we were really different, but we had a great time together and had been lab partners in chemistry. One day I was walking down the street and he drove by, got out of the car, and asked me out on a date in front of all of his friends, and all of my friends, who were all different people. How could I say no? High school was over, none of it seemed to matter anymore.

So we went out, ate some ice cream, saw a movie, and he thought it was funny, not annoying when I talked through the film and yelled at the screen (hey, that's how I grew up). He tried to hold my hand in the theater and that's how I learned you can't squirm out of hand-holding without being a total bitch so you should just do it, no matter who it is. He's trying to hold your hand, not feel you up. You have to let him. Then we went back to his house and talked on the porch for a long time. He drove me home and leaned in to kiss me, and I pulled away, because I felt I would be cheating on the other boy. As soon as I did that, I regretted it, but I didn't know how to fix it. A few days later he moved to New York and I never saw or spoke to him again.

Oh, how serious I thought it was, how I thought it mattered if I kissed him. Of course it didn't. I could have slept with him, and what would that really have done, how would that have changed the course of things in all of our lives? The great part is that wasn't on the agenda at all. This was one of those moments you have in your life where this sweet kid is telling you, hey I'm moving away, and one of the last things I want to do before I go is kiss you, and then you take yourself so seriously you don't even do it. If only we could protect ourselves from ourselves at those moments. Because we can't, we give vague unsolicited advice to kids who look at each other like, this lady's crazy.

But maybe the moral of the story is that the boy in that story won, because here I am writing about him almost 20 years later. Maybe being a part of the story is better than the kiss, though I contend we could have had the kiss and the story, and that is what we should all be trying for at the end of the day. Telling the story is important, but so is living the story before you get to tell it.

Now, do I think that way because I am a woman and I relate to people through stories, not actions? While I scream out after witnessing an incredible 99 yard touchdown run, I am simultaneously thinking about the ways that gender plays out in our very real lives. I am remembering a story I heard from a friend, a guy who had been in a relationship with the same man for many years. He started talking about a trip he had just taken with his sister, and telling this hilarious story about how they suddenly were attacked by vampire bats. I was just about on the floor laughing, as was my other friend, when I realized he had never heard this story before this telling. And I thought, right there, that is the difference between men and women. You get attacked by some damn vampire bats, and you forget to tell your boyfriend? I would have had to build my own phone in the wild to make sure I could tell that one right away. It's so bizarre, how else would you know it was real?


That's what I guess this blog has brought to me, selfishly. What a gift to be able to recognize your life and what it is and what it means, not later, not in hindsight, but while it's happening. What a gift to yourself and to anyone else who is a part of that story. But you can't do that if you are too wrapped up in yourself and the way things are supposed to be. That's why we have conversations like this in my house (and we always have, way before cancer) while we're watching movies on Netflix: OK Gabe, if there's ever a civil war and you haven't seen me in two years and the world has gone to hell and you see Natalie Portman living by herself in a godforsaken cabin, just sleep with her. You will probably both be dead within the week, and I wouldn't hold it against you anyway. Or, ok Gabe, if you could save the entire human race but the only thing you have to do is kiss a woman who isn't me, you had better kiss that woman or I will make sure to kill you myself. In fact if you could save just one person, or even stop one person from getting hit by a car, by kissing someone else, promise me you would do it, ok?

And this circuitous train of thought brings me back to the early days of my cancer diagnosis, when I told Gabe I had something to tell him, and he gave me a crestfallen look before he steeled himself to hear it. I hadn't really thought about asking "permission" to have an ex take half-naked pictures of me once I found out I had breast cancer, but he suggested I find out if Gabe cared. Instead of asking, I just told him. When Gabe heard this he sounded really relieved and said, oh, that's not what I was expecting you to say. I thought you were going to say you had slept with someone else or that you wanted to sleep with someone else.

And then I got pissed, because first of all, did he really think that was at the top of my mind in the middle of my terror and sadness and grief? Really, I was thinking about sex? And then I got even more angry, thinking about this supposed hall pass I seemed to be getting, since it didn't even seem like he would have been mad, just a little hurt, if I had cheated. Like I was Cancer Girl. I said, what, do I have one foot so deep in the grave that the normal rules don't apply, I don't even need to be a normal wife anymore? And he stumbled, trying to explain. No, that's not it, of course I want you to myself, I don't think of you as dying, I just think that it's your life, and you need to do what you need to do, whatever will help you deal with this.

I was still angry, and confused, by this reaction. I told a good friend about it and she said, huh. Can you imagine being in that place? Imagining a betrayal from the person you love most in the world and immediately seeing past it, forgiving it, because you just want that person to feel better and you don't know how to help her? Think of how much pain you must be in, how much love you must have, to feel like that.

And while I was marveling at the existence of my super-intelligent and thoughtful friends, I understood exactly what she was saying. In part she was saying, you need to flip it, Katy. You need to realize that the story you just told me isn't about you at all, it's about Gabe. And I would take it further and say that by saying what she said, the story was really about her. Or the story was about the man who took the photos, who asked if Gabe would think it was weird that we were in our bedroom with the door closed and I was taking off my clothes in front of someone who used to be my lover while my husband played downstairs with the kids? All I could say is no, since I didn't have the heart to say, he thinks it's weird that I have cancer, that he might be raising those kids by himself, and this is really just some meaningless small potatoes in comparison. I couldn't say that because it wasn't meaningless to him. He wasn't living with my cancer every day, he was living in that awkward moment.

So for one of many times in my life I learned how to see myself as someone else saw me. And like everything does, that brings me back to gender politics and gender identity. Under the guise of empowerment, we spend a lot of time telling girls not to care about what other people think, not to see themselves how other people see them. And yet, I feel that we are taking away one of girls' greatest strengths when we do that. My mom used to say "men think they're beautiful." That means that many men have a hyper-inflated view of themselves and their attractiveness, their appeal. But it means something else too--they don't get that we don't necessarily see them that way. They just don't see it because they have never been taught to care what we think. But women, on the other hand, think about this all the time. We receive so many thoughtless comments (thoughtless in the real sense--even if they are positive) about how we look, our sex appeal, that we learn to objectify ourselves, to sit outside of ourselves and look in. However, too often, we are too hard on ourselves, and we make up flaws that no one else can see. In my mind there is a happy medium. Why can't we encourage everyone to see themselves the way that other people ACTUALLY see them? To put themselves in the other's shoes, and look back inward?

But again, here I am playing at giving advice. I can't say I'm very good at what I have just described. I have had my moments though. I was able to do that when I lost my hair. I thought, realistically I believe, that people will see me bald and think, that's kind of strange looking. Or they will think, she has cancer. A few people might think it looks nice. A few people might appreciate it. But no matter what the reaction, most importantly, those people will think whatever they will and then never think about it again, because I am a stranger and they don't give a shit about me or my bald head, so why should I make such a big deal out of it myself? The knowledge that my "otherness" wasn't so interesting in this wide world made it easier, just like it made it easier to be in a wheelchair, or to have such pretty hair that people you have never seen before and will never see again reach out to grab it and ask if it is real. Those people were seeing one perspective of me, they weren't seeing ME.

To see that, you would need to read this blog, or tell a story about me, and you would need to see me in the flesh or talk to me. Because if you have both, you can appreciate all of the unseen possibilities, you can think about that stranger who did a double take and then smiled and winked at you, and you can wonder if he would go back to the office and tell a little story about the cute bald woman he saw on the street. The wink made it real, the story made it last. And then you're outside of yourself, without ever having to leave. That's what completes the picture right? That's it--the kiss, and the story. You need both.

Thursday, September 1, 2011

Day 483: Cancer Poem #2


I've never done this before--written a poem and put it out there for folks to read the same day. Shit, I never show any poems to anyone, as evidenced by the fact that Gabe has been wondering what the hell I've been doing for the last several hours with a notebook and pen in my hand.

I am posting this because I was going to write a blog about how I realized on our way up north that I am no longer afraid of bridges. I couldn't figure out how to do that in a blog though, so I did this instead. A few of you out there might appreciate this; others might think I'm pretty strange; and others probably just don't like poetry, which is ok too.

Acrophobia

As a child, I loved heights—I liked to feel tall,
to lord my tiny body over the world that lay below me in miniature.
I can remember exactly when the fear came,
in a dream, when I was about ten.
My family rode in a car made of cardboard and kickplates,
and that car became an airplane, and that airplane broke apart
and I fell, slowly, with that viscous trudge that only happens in dreams.
I fell towards the water, reaching up, and I heard my mother scream to me.

I woke up shocked, to a new world
where I needed to be close to the ground.
Maybe that was the moment when it started,
my coming of age, with a crash, in a dream.
I learned to be cautious when I would have been curious,
the cliffs I would have peered over with fascination
had to suffice from a distance,
and things that were beneath me were just that.
I started to love cities for the wonders they offered when looking up.

But as all adults know, the things we fear are too often unavoidable.
I had to find ways to bear them, even in my beloved cities:
The glass elevators, high floors where meetings took place,
sewer grates, real airplanes and bridges—especially bridges.
These were things to get over, with a shudder, hands clenched.

Time kept passing, and I realized at some point that I had become
the miniature in photographs that other people took from up high.
Soon enough I became something else too.
No longer a passenger, I was the one in charge,
I was the mother driving the car over
the seemingly endless Green Bay Bridge
on the way to our peaceful vacations in the north woods.
I knew enough by then to keep it to myself, to stare straight ahead,
shut out everything but the path in front of me and get us home.

For six years I crossed that bridge, eight times a year, maybe a dozen.
Then we had a year without bridges,
when there seemed to be nothing to cross but the next cross to bear.
In that year, I aged ten, stared death in the face,
and found youth again, somehow intact.

I circled back to myself, but not before reaching up to my mother,
not from a car or an airplane but from a house,
a cozy brick structure that she swears she will never miss
since she cannot seem to shake the image of my face
as I left to discover what little I could of my fate
one early morning while she screamed out to me,
but silently, not in a dream.

The years since that dream have passed;
so it is with the seasons that lead us across the great bridge yet again,
towards the place where we go to get away from our regular lives.
Somehow, it’s my turn, as it’s always my turn, to drive us over.
I find myself singing along to the radio this time,
switching to the next song, correcting my grip for the wind,
passing on the left, pointing out the gorgeous bay,
excited by its expanse, telling the kids
if you didn’t know it was a lake you would think it was an ocean.
We are miles away before I realize what has happened.

Oh, if only there had been some other way to learn
that the distance between me and the water,
the space between the water and the car,
the gulf between the world we built and the world we couldn’t walk on
was not so insurmountable after all.

I had a dream that lasted twenty five years.
Though I cannot imagine what it would entail,
I do hope to have another.

Thursday, August 25, 2011

Day 477: Post-Cancer Exercise Modifications (And Other Life Lessons, Because I Can)






Now that I’m more than a year “cancer-free,” I often find myself questioning the purpose of this blog. Is it to leave my children a reminder of who their mother was if this shit comes back to haunt me and I don’t make it? Is it a platform for ranting? Is it just an excuse for me to write somewhat creatively every once in a while? Is it to tell something of my absurd little story so that some other young woman going through similar things doesn’t have to search the internet in vain for advice?

On the off-chance that the answer is anything approaching the latter, I’ve decided to do my own completely un-scientific, not based on any knowledge of sports medicine, list of modifications for working out during and after breast cancer treatment. You are supposed to stay active to save your life, lower the risk of recurrence, etc. etc. For those of us who were extremely active BEFORE finding out we had breast cancer, we might be somewhat skeptical of this. This doesn’t mean we won’t continue to exercise, even manically, under the assumption that we are doing what we can with what we’ve got to fight something no one really understands. It just means we wonder sometimes.

Before I got pregnant with Augie, and hell, during most of the pregnancy itself, I exercised for about three hours most days. That was partly because I was annoyed at how hard it was to lose weight after Lenny was born (out of whack hormones, related to breast cancer, perhaps?), and it was partly because I was frustrated at being unable to get pregnant for a while (again, with the hormone imbalance). I figured, if I’m not going to get pregnant, I’m going to get skinny, damnit. But mostly it was because I learned years ago that if I don’t get a lot of exercise, I can’t sleep. And when you are a chronic insomniac because your body is begging you to move move move! all the time, it gets tiring, literally and figuratively. Exercising compulsively is good for me; hell, it probably saved my marriage. When people remark on how Gabe must be really understanding because I get up super early all the time to work out and he is in charge of getting the kids up, I think on the one hand, well, they’re his kids too, and on the other I think, you have no idea. If I go early enough, the entire family hardly knows I'm gone. Besides, Gabe is all about me exercising. If I get four or five hours of sleep a night, I’m actually fun to be around. He’s my biggest workout supporter.

So I exercised like a nut for years and got breast cancer anyway. I don’t know that exercise will do anything to save me from cancer, but it doesn’t matter, because I like to do it anyway. Besides, I have a lot of very small clothes in my closets (yes, I use up a lot of the closet real estate in our house) and I don’t want to get new ones. Anyway, I continued to exercise to the extent that I could after two surgeries, and during and after chemo and radiation. I started new routines, took up new activities. My co-workers who saw me waddling into the gym 8 months pregnant saw me slowly walking into the gym when I was straight-up bald and going through chemo fatigue just a little over a year later.

Though I kept at it, I got frustrated by what I couldn’t do, and truth be told I am still frustrated. My left pec still hurts, making chest exercises difficult. My breast hurts as well, 14 months post-surgeries. I have an insane amount of scar tissue, and today I left the gym early because my boob was just killing me beneath the scar and I didn’t think it would be advisable to sit there holding myself in pain in the co-ed class. Mostly, I still have issues with the extension of my left arm. I can extend it all the way above my head when my hand is empty. However, I cannot easily bear weight on that arm when it’s extended, either with free weights or the weight of my own body. Doing this leads to chronic and sometimes scary pain in my pec, breast, and arm. I’m half-convinced that overdoing it with my arm and chest is part of what led to that awful mastitis I had over the winter, though the docs all said that's not true.

So I’ve learned a few things through trial and error, and though those things are specific to me, I’ve decided to share in case anyone finds them useful. I will insert a caveat though: If you have had breast cancer and you try these things and you injure yourself, don’t blame me. I’m a business economist, not a personal trainer, so listening to me is probably not that advisable. I’m just a really opinionated business economist, so here goes Katy’s list of “if you have breast cancer and would like to exercise, but you can’t do this, do this other thing instead:”

Can’t do:

1. Push-ups. Do planks instead. You might be weaker in the chest, but somewhere underneath it all you will get a core of steel. (I like to eat, so there won’t be any 6-pack on this body anytime soon, but I know those muscles under there are strong!) I have accepted that I might never be able to do push-ups. This is ok—it’s not a necessary condition for a happy life, after all. The main issue in a classroom setting is to not distract anyone else by standing or lying on your back, bringing attention to the fact that you are being a smart-ass and not doing push-ups. So plank it as long as you can hold it.

2. Overhead tricep extensions: Easiest modification of them all: just do kickbacks instead. Same benefit, much less pain.

3. Lat pull-downs: do these straight in front of your chest rather than with arms overhead. This works different muscles, but it still works. You are not sitting there with your sorry ass on the couch, so go ahead. Today the gym intern made a general comment, knowingly directed at me, while we were doing this: “Make sure your arms are ALL THE WAY OVER YOUR HEAD.” The gym manager glanced over at me quickly. I gave her a reassuring look. No need to bring breast cancer into this 22 year old girl’s state of consciousness; I can take the criticism in stride. Now in general, I have finally graduated to being able to do normal lat pull-downs overhead, but I have to use smaller weights or a tube with less resistance. Today my breast hurt, so I just modified and held my arms straight out. Follow your instincts.

4. Squats/lunges with weights for strength: When I first told my gym instructor that I had cancer, she said she would work with me on modifications. She said, some things you won’t be able to do, but other things you’ll always be able to do, like lunges. This is true. Breast cancer does not affect your legs (unless chemo makes you too weak or gives you extreme neuropathy or spreads to the bone, of course). My issue was that I always held two 10 pound weights for extra strength. Post-breast cancer, until very recently, I could not hold the weight straight down at my left side without hurting my arm. So I used ten pounds on the right, five on the left for a while, and totally destroyed my back due to the imbalance. Then, for months I used a lighter (12 pound) medicine ball instead, holding it right out by my belly so my arms were bent. That way I got the benefit of the weight-bearing exercise but I didn’t wreck my arm. I have recently graduated to using weights again, albeit 8-pounders.

5. Rows: Here the modification depends on your injury. If my general chest/breast issue was the problem, I would just do something else entirely, like crunches. If my chest was feeling ok but the arm was giving me trouble, I’d do the row, but with less weight/resistance, and alternate. Today I can usually do them normally.

6. Chest-flys: This is just not advisable soon after surgery. Your breast will feel like it’s on fire. It ain’t worth it. If your class is doing this while lying on the ground or a ball, do regular chest presses but with lighter weights than usual. If that still hurts, sit on the ball, or kneel on the ground (again, try to be less distracting to folks) and do hammer curls instead. I always default to planks or bicep exercises when I can’t do something else. All is not lost; you will at least have those Michelle Obama arms going on. (Here’s a shout out to my husband, one of the few men in America who really likes and cares about women’s arms. I live with comments like “Damn your arms are looking hot baby!” Is this normal?)

7. Side planks: Again, not very advisable on the affected side. If you’re up to it, do the plank on that side on your forearm (I always do side planks on my forearms, not extended arms—these are really hard for me on either side, cancer or no) but rest your weight on your knees rather than extending your legs out and up. You will still work your obliques. If that doesn’t work, do a regular plank.

8. V-ups: Don’t do it. This is just kind of unnecessary if you ask me.

9. Shoulder raises: do these exercises—I think it actually really helps with range of motion after lymph nodes are removed. Just use tiny weights if it’s close to post-surgery. Or don’t use any weights at all—the motion of moving your arms straight ahead or straight to the sides is good for you. If anyone looks at you weird because you’re doing a side raise with invisible weights, just give them that death stare with your big eyes that look scary underneath that bald head. That’s what I did, and believe me, it works.

10. Dead lifts: This seems obvious, but if it hurts your affected arm too much to hold your arms "dead," just bend at the elbows and hold the weight by your chest. You will still work your hamstrings and stabilizers.

11. General weight-bearing exercises or arm exercises: If your arm bugs you, use less weight. This is common sense; don’t do what I did and use the same, higher weight on the “good” side because you think you have something to prove. You will get strong muscles on that side and then your back and shoulders will kill you. So use less on both sides. This is not a contest.

12. Running: I have no advice here. I hate running. I even had trouble walking right after surgery because any motion or bounce was excruciating in my breast, though I’m small-breasted. I still took long walks every day, however, and suffered through it. Sometimes that’s the best advice, I suppose. Just suffer. It won’t last forever, probably, or at least theoretically.

13. Swimming: don’t listen to me, listen to your doctor and his or her advice on getting wounds wet, contracting germs, etc. I stopped swimming and doing water aerobics during the latter half of chemo and for all of radiation (it was forbidden during radiation). And no, I didn’t get fat.

14. Pilates or yoga: do these, especially during chemo and radiation. Now those who know me know I hate yoga. I need to be doing something faster or else I get bored, so I did pilates several times a week during treatment. The point is, your joints will hurt at different points during chemo, and your skin will feel tight and painful during radiation. You will be crazy tired, not tired even—fatigued in a way you didn’t know was possible. The overall body work and stretching with pilates and yoga will help. Trust me. If you need to bow out of certain exercises or poses, do it. Just pick a studio or class where people aren’t judgmental jerks and you’ll be fine.

15. Lifting heavy things: don’t be an idiot. If the heavy thing is not your child about to be hit by a bus, it probably doesn’t need to be lifted by you while you’re still recovering. Not today, maybe not ever. Just flirt with some guy and he’ll do it for you.

16. Getting out of bed: hey, if you can’t do it, you can’t do it. Your muscles won’t atrophy in a day. Let your husband/mom/neighbor/friend/cousin take care of the kids or the chores, and get up tomorrow, or later tonight. Watch some stupid shit on tv. You have cancer. You don’t have to follow the normal rules.

Wow, it felt kind of good to get all that down. This makes me think that I should write down some other general-life breast cancer modifications:

• Underwire bras: Just chuck them. I was the lingerie queen, the girl who wore matching lace bras and panties when I was 14. Breast cancer put the kabosh on all that. Wear soft-cup bras, or nursing bras even. Don’t wear one at all if you don’t have to, but I would say that the more your boob hurts, the more support and compression you actually need, even if it sounds illogical. I know this bra advice doesn’t work for women with mastectomies. Sorry—I didn’t have one, so I have no clue and won’t pretend that I do. My boobs are basically the same size and shape, which makes me think that the large amount of tissue that was removed on the left was just replaced by scar tissue and firmness from radiation. So I can wear cute bras now, but no underwire.

• Food and nutrition: When the kind nutrition specialist meets with you during chemo, listen politely and then laugh when she walks out the door. When all of your well-meaning friends tell you what you should eat to maintain energy, smile and nod. Your job is to eat whatever the hell you can so that your weight doesn’t get too low and your body can safely absorb the poison. If that means you eat only pudding, or you eat weird things like Frosted Flakes and fresh spinach (my chemo dinner of champions), so be it. When I got down to 110 pounds after my first round of chemo, from 117, and everyone worried about me, I listened to them tell me I needed to ingest more calories, that I needed to eat more than fruit and rice. I secretly thought, screw you. I have CANCER. I’m doing CHEMO. I’m not going to starve to death; eating is the least of my problems. I will eat what I can stomach and worry about the right diet later. Your body helps you with this process. I actually craved goat cheese and spinach all the time on chemo. These things are mild and have protein and if you eat them, you will be fine. Your body isn’t stupid. Whenever I complain about the little pooch I have on my stomach, Gabe first scoffs and asks what the hell I’m talking about. Then he says women are supposed to have some softness, that’s supposed to be there, if you have nothing what would protect you from famine? (Can you tell this line of argument comes from a guy who was often hungry as a kid?) At 110 pounds, I went back to that thought. I said well shit, here it is. This is my chemo famine. My body will protect me. And it did. I got weaker, but not too weak. I made it through.

• Sex: do this as often as you want, as vigorously as you can, if and when you are able. If you are in the nadir portion of chemo, you might want to abstain for a few days, lest you get motion sickness from the act itself (don’t laugh, ya’ll know that happened to me). If you go through early menopause due to chemo or surgery, use silicone-based lube. All the other stuff just doesn’t compare, and no one will tell you this. If you don’t have an understanding partner, dump him or her. It is that person’s job to modify and figure out what works for you so you can enjoy sex again. If you are lucky like me and you completely come out of menopause to be a woman with monthly (if irregular) cycles and a surprisingly high sex drive, say hallelujah and have fun! When doctors and friends tell you that sexual problems are the least of your concerns, that at least your husband still wants you, or some other bullshit, realize that at that moment in time, those people are assholes. Maybe not all the time, but right then, they just suck. It’s important—don’t let anyone tell you otherwise. Nothing—not having cancer, not weaning my son, not being bald, not mentally preparing my own memorial service—made me feel as old and depressed as the sexual changes I went through from chemo-induced menopause. The fact that I came out of it is something that I revel in every day, or at least every other day, depending on how tired Gabe and I are that week.

• Parenting: don’t try to be superwoman, or the parent who protects her child from all things cancer-related, or the one who is saintly in the face of tragedy. Don’t be a martyr. No matter what you do, you will never protect your kids from knowing you have cancer, or from knowing that cancer is very very bad. So just be the parent you were before, to the extent that it’s possible. If you didn’t do crafts with your kids before cancer, by God don’t start doing them now. Your kids will really think you’re dying (at least that’s what mine would think). Modify your expectations of yourself and what you can do as a parent on a daily, or even momentary, basis. I received so much conflicting advice about what to tell Lenny; no one could have suggested that I just tell her the whole thing, kit and caboodle, in the middle of dinner, starting with, are you wondering why the phone is always ringing? No one could have predicted our collective relief when it was out in the open. Similarly, no one could have prepared me for the moment when my hand was shaking too much to feed Augie his lunch last July. I was utterly shocked that I couldn’t do it. But shit, the child needed to eat. So I put my elbow on the highchair tray, steadied that arm with the other hand, and fed him. He’s a crazy little bruiser now, so no harm, no foul. All I'm saying is, if luck is in your corner you will live a while after this, at which point all the other things are but minor considerations that your kids will one day forgive.

• Moods: Do not expect to keep everything together all the time. Cancer taught me to carry Kleenex in my purse. If my body wasn’t too bone-dry on chemo to physically cry, I just wept all the time, for months. It was like an alien being had invaded my stoic little body. This might manifest differently for you. You might feel angry, or hollow, or manic, or terrified, and all these things might come out of nowhere. Don’t begrudge yourself this new aspect of your personality. The rest is still in there, but you just got buried under some massive bullshit and you need some different tools to find your way out. So again, cut yourself some slack.

• Hair: Let it go. Literally. Being bald isn’t that bad. If you do decide to wear a wig or a scarf, make it a point to learn to study your face. You will see it with more clarity when there’s no hair to distract you.

• Friends: keep some. It’s important. Maybe they’re old friends you haven’t seen in years, maybe there are only a few you can really count on when the shit hits the fan, maybe there’s only one person who still treats you the same. It doesn’t matter, just keep those folks close.

• Ridiculously insensitive or just plain weird comments: Let them slide. People are clueless in general. When it comes to something like cancer, especially if a young person has cancer, the whole of the world seems to take leave of its senses. You must modify your reactions to these people, mostly by acting as if they are not even there. “Hell no, you’re bald!” “All of my aunts died from breast cancer.” “Your head isn't shaped funny, at least.” “You look great! I wish I could lose weight that fast!” “You have breast cancer? Your boobs look nice. And symmetrical.” “Oh. That must run in your family.” I mean seriously. If you have to physically shut your own mouth to stop that witty reply from coming out, do it. Unless that reply is my personal favorite, in which case I give you permission to respond to a compliment on your looks with “Thanks, but I don’t have cancer of the face.” It’s great to still feel beautiful while going through this crap, but as the last picture here attests (taken a few days after my first surgery), breast cancer is one hell of an ugly disease.

And finally, don’t modify too much. You have cancer, or you are recovering from cancer and its treatment. You’re not dead, not yet, at least. Keep exercising, eating, sleeping, hanging out with your kids, talking, having sex, working, bitching in cyberspace, all to the extent that you can for as long as you can. If nothing else, you’ll get some of that weight of the world off of your chest. Even if said chest is bruised, or scarred, or burned, or tattooed, or lopsided, you can get some of that weight off just by being yourself. That’s why I’m glad I’m not a Pollyannish, sunshiny, cheerleader type now that I’m supposedly recovered from cancer. If that were the case, cancer would’ve won. People would say, where in the world is Katy Jacob? Right here, son. Now shut up and stop asking me questions!

Sunday, August 21, 2011

Day 473: KatyDid 36






OK, I'm jumping the gun a bit, but assuming I don't get hit by the proverbial bus, I will turn 36 tomorrow, and tomorrow will actually probably come before I finish writing this blog. So I've reached another birthday. I've always felt that it was appropriate for my birthday to last about a week, but somewhere down the line, as an adult, you kind of lose the privilege of excessive birthday celebrations. Unless, of course, you have cancer at a young age, in which case you get to have whatever the hell kind of celebration you want. Last year I joked that we would have a huge party for my birthday, because no one would feel like they could say no to the cancer girl, at least not when she was in the middle of chemo.

I was right.

My mom had to put up with at least 50 people at her house last year. Gabe and I made the decision years ago that we would always dress up for our parties, no matter what other people did, so there I was in my little black dress, fancy shoes, with my bald head shining. I turned 35 four days after I finished my last round of AC chemo, and my best friend from high school was in town to help for that chemo round. People still made food for us three times a week, and the chemo gods smiled on me for my birthday party, and actually allowed me to stomach some pizza and cake. The party was great, and then there were impromptu fireworks right outside the window after most people had gone home. I felt loved, and lucky to have gotten to 35. I also felt like complete shit, physically, and had just come out of one of my short-lived cancer-related depressions; it's hard for me to remember why I was so down, but it seems like there were enough reasons, so let's just leave it at that.

I realize that by saying what I just said, I've proved that while I might have aged another year, I'm still Katy, keeping it real in cyberspace. But that's the truth. And damn, what a difference a year makes. This year I guess we just didn't want to be bored, since we decided to throw a party three days after we moved into our new house. I will have you know that it is one of my superpowers to make a home look lived in within 48 hours of moving. And with my mom's help, that's exactly what happened. Gabe came home from work on Friday with the kids in tow and was completely shocked at how everything was put together. I warned people there would be boxes everywhere; I think the three boxes (outside of some stuff in the basement) I didn't unpack were all in our unfinished master bathroom. I had even put stuff back on the walls.

I feel like our family situation is so different from a year ago, and it's not just that we live in this big sprawling house that is so far removed from Gabe and my understanding of reality. Gabe was out mowing our huge front yard yesterday morning with his nerdy battery-powered environmental mower, figuring out the best strategy to get down the sloping hill, and I wondered how many people just assumed he was the lawn guy. I think about how this house has so many things I've always wanted--a huge front porch to sit out on, with enough space for a swing; a room I could turn into my own personal library (that's where I'm sitting right now, writing this blog, listening to these incredibly loud crickets); a landing where I can sit and read a book underneath some huge windows that cast so much light down that it's hard to see; a second floor laundry room (we just had this constructed, along with the bathroom--what an absolutely frigging brilliant idea, I swear); a breakfast nook with a window seat. What a great house.

And I made it ours very quickly, but that's not the only thing. We didn't even move Augie's crib to the new house; he got to a new room, with a new big boy bed. I decided to put it in the middle of the room and I didn't give him a bed rail. He has been fine--sleeping well, doing funny things like "cuddling" a ceramic picture frame holding a picture of himself when he was a baby. And Lenny loves her new room, complete with her own mommy-style reading area. Gabe gets the whole basement to himself, and I honestly plan to never venture down there if I can help it.

So here is this house, which now is the Jacob-Sterritt house, the place where there's a party a few days after we move in. And people came, though not as many--maybe 40, including kids--which isn't surprising given the late notice and the amount of hair on my head, and general health I can claim. And after last night, I feel like we might be those people, the ones who have parties, where people go to hang out. That was a nice overall thought, but I was also excited about other things: I could eat, and drink even, and wear tall shoes and give tours and go through the whole night without any "moments" and generally feel like a normal hostess.

On the other hand, there's always something to remind me in the middle of it all, some second when I find myself clutching my boob because it hurts like hell out of nowhere (lifting boxes, maybe?) or when I'm telling what I still contend is a funny story about wanting to strangle Gabe for his illogical choices of where to move certain things, so I had to move them all again. Some of this was pedestrian: why are there child gates for the third floor playroom...in the basement? Why is there bathroom stuff in the living room? And by God, what were you thinking when you looked above our refrigerator, where we've placed our wine rack (we now have 19 bottles of wine, I believe, since most people brought a bottle, so I guess we have to have a wine tasting party sometime) and decided to put next to it...my wig boxes?

Seriously. Hundreds of dollars worth of synthetic hair--plus my real hair to boot-- sitting on top of our damn refrigerator. I was about to lose my mind. But I didn't, for the most part--I just gave Gabe a tremendous amount of shit about that one. I was feeling well enough to give him shit, to stay up, to eat, to see my birthday in the more traditional context, where I think I am getting old at this point. Don't get me wrong--I don't think 36 is actually old, I just think a lot about how much time has passed, and how half a lifetime ago I was still an adult, and how strange that is. I see all these kids starting high school, or going away to college, and I think about how time just seemed to be looming ahead of me at those points in my life, how everything was such a promise, even when everything was always kind of hard, because my life was always a real life, filled with difficult things, even then. But time, that seemed to always be there.

And now...who knows? I feel like it's utterly impossible that I could die from breast cancer, I feel that it is entirely surreal that I ever had breast cancer at all. Who is that lady smiling over her birthday candles, with her bald head? Well, that's me, that looks just like me, what of it? What's funny is that I think that all tragedy must manifest itself in some kind of dreamlike way, because when I think about other terrible things that have happened, that's how they all play out in my mind: my car accident and the subsequent realization that I could no longer walk; the viscous process of being robbed at gunpoint on the green line; the party I attended when I was 15, when I learned the hard way how to fight off three boys who were much bigger than me; the day my daughter had an allergic reaction to rice cereal when she was four months old and we were in the middle of the north woods and I thought she would stop breathing; and so many others, of which this whole damn cancer thing is just a piece. To me, it is all surreal. It seems obvious that I would get out of these situations, that I would live through them and come back to myself. It doesn't even occur to me that other options were really possible, not REALLY, not me, right--not me?

And yet, these moments, or months, depending on the circumstances, are surreal because they actually did happen, and the outcome absolutely could have been horrific, and yet...I'm still me, I'm still here. And some others aren't, or they are here, but their lives have inexorably changed, for the worse, due to the experience. What about me? Have I changed, will 36 bring in a different Katy? Is cancer just that thing that led to a chic haircut, or will I be looking back at all of this when I'm 37 thinking, whoa, that's surreal, that was back when I thought my cancer was gone?

Who knows. I appreciate birthdays these days, but like I said, I always did. I always assumed that my husband or boyfriend would indulge me during my whole birthday week. We just kept it to ourselves. Now I get to give myself a shout out, tell other people about it, and throw a crazy chaotic party right in the midst of all these changes with my house, my career, my life.

I just think about things a little differently now. When people talk about being afraid of turning 40, my first thought goes like this: 40! That would be a trip! My kids would be 10 and 7...that's better! I think about 50: the kids would have reached their maturity, Gabe and I would've been together for almost half of our lives...that would be better, it would be ok to go then. I think about getting old and I still hope I get to do it. But these thoughts are not at all macabre, they just are. Things happen, you roll it into your life, make it a part of the pontification rotation. When October 11, 2009 rolled around, other people posted on facebook about their daily activities and I wrote: 25 years later, still walkin. People who knew me as a child knew exactly what I meant.

And those who have been regular readers of this blog know what I mean. You say 36, I say 16 months out. You say happy birthday, I say hallelujah. You say what a beautiful home, I say, yeah, I know, I'm glad they have this to fall back on. You say this is good cake, I say Jesus Christ it is good, I can taste every bit of it, there's not a part of me that feels sick, that is defying me right now. That's what I say in the end I guess--right now, that's what I've got, right now.

Where are you right now, those who are still reading this? Happy with your place, I hope, content. Here's where I am: I'm looking at all these books around me about urban studies, racial politics, genocide, and poetry, wondering how I ever had a date in my life, and there's a picture on the desk of my daughter with her Magnum PI poster, one of me with a paper crown on my bald head, holding my deviously-smiling son on my last birthday, another of me at the dawn of my professional life when I could wear a suit, hold an orange juice, and still look glamorous, and there are way too many shoes in the closet, and I'm writing a blog while my husband falls asleep on the guest bed in this room because he wanted to be near me while I was writing, and it all seems to fit, this puzzle that's my life. You say happy 36, I say why not? It might as well be. Good night.

Sunday, August 14, 2011

Day 466: Waiting on the World to Change...or Not




As I look around my completely disastrous house, filled with boxes, in a state of utter chaos as we wait to move, I find myself wondering if at some point in the last year we just completely lost our minds. I mean, really--at what point did we take leave of our senses, and decide to buy this new house with no clue when, or if, we could sell the other one?

I guess we decided to do it when the opportunity presented itself, cancer and terrible economy aside. I was reading an article in the Tribune today about how the current generation of young people are putting off major life decisions, like planning careers, getting married, and starting families, due to the economy. They are waiting for things to change, biding their time until the sun comes out again.

I was reading this story waiting for the part where it would make sense to me. This seems completely different from what happened to the generation that came of age in the Great Depression, when couples who grew up in the Depression got married after knowing each other for a week before he went off to war, when people continued to have children and try whatever line of work they could get and found out that life was actually really fulfilling anyway. Today, the options seem different--go to graduate school, wait, "turtle," hold out until things get better.

Maybe this makes no sense to me because I have never assumed that things would be better, I have never really had the expectation that life would offer me what I wanted. Shit, I have never really known what I wanted, outside of a general hope of happiness and a willingness to do what I need to do to support myself and those dependent on me. I never thought it made sense to wait, because waiting just means it's later, not necessarily better. So when I was young and single and making hardly any money I put myself through grad school and bought a condo. Why not? The worst that would happen is that I would fail and end up with next to nothing, and that was something I already knew how to do. I got married a year and a half after I met Gabe, which seems like a long time, but people have said things to us like "wow, what did you guys do, just go on a date and then get married?" as if we had some kind of shotgun wedding--at age 29. We bought a house when Gabe was self-employed and I had been at my new job for just a few months. We had our first kid relatively quickly. Now we're doing all of this crazy transitioning, right after going through one of the hardest things we could have gone through as a family--in the midst of that hard thing, actually--in one of the worst economies.

I wish I could tell some of these kids from the article what I didn't realize I already knew at their age. There never is a great job waiting for you, a perfect plan in motion for your family, a soulmate hiding around the corner. Granted, my goals were more basic, much more working class I suppose--I just wanted to graduate college, never having been married or pregnant, and I had no idea what else I should do if I succeeded. I didn't even expect to succeed, even though I had control over all of those things. I half expected for the other shoe to drop and the whole damn plan to go to hell.

But I knew I would work, because I had always worked, ever since I was around 11. I knew I would take an unglamorous job if I had to, because that's the only kind of job I ever really expected to have, even though I wanted to do other things. I had already had many of those types of jobs--including some that I really liked, such as being a secretary or a receptionist. When I actually ended up working at a job that coincided with my personal interests and mission, I was as surprised as I was when I was 14 years old and the boy I had a crush on actually had a crush on me at the same time. Boys had liked me for years, but never the "right" ones. When that finally happened, I thought wow, what a world, how strange is it that the person I noticed would notice me out of all of the other people there are to see! That's how I felt about working in the consumer advocate world I entered when I was 23. This is a job, and it's fun! I'm doing something I enjoy, and I am getting paid, albeit not a whole lot! But I never expected it. That's a different way to view the world.

I'm glad I never put anything off, never waited. If I had, I would never have this marriage, this family, these houses would not have waited for me. We might fail, I suppose, the market might never improve. But why would young people with everything to live for give up the chance of their own futures just because they might not get what they thought they wanted? They might not get that anyway, great recession or no. Some of the best things in life are the things you never planned to have, the dreams you never considered, the paths that just happened when the rest of your luck ran out.

That is some un-Katy, trite sounding shit and I know it. But I worry about how my kids will interpret their lives when they are being brought up in this upper middle class family, where they have everything they need for the most part and thank God they have not suffered much, but for the suffering I brought upon them with my cancer. I feel like everything I am, everything I've learned, has been due to something bad that happened to me, and yet I don't ever want anything bad to happen to my kids. So how will they learn to lean on themselves, to understand that life never had a plan for them, they have to plan something for life, and then be willing to just wing it? I hate all that shit about triumphing through adversity, but maybe that's what's going on with some of these college kids right now--they don't have experience with adversity, so it scares them, and they wait for it to go away.

Dealing with difficult shit is one of the only things I know how to do well. I would never say that I am not scared of things, but rather that fear is also something that I understand. I just feel like neither fear nor suffering should stop you from trying the next thing, since the alternative is not much of one. If there isn't a next thing that will happen in your life, it's because you're dead or in prison or some other inexorably bad thing has happened to you.

One of the things I ask myself when I have these strange motherly concerns or deep thoughts is, is it some kind of cosmic joke that I am someone's mother? Do I really have a clue how to do this? I call them rugrats and swat them on the butt and kick them out of the kitchen. I yell at them when they whine. I walked around bald and made them deal with the consequences of people's reactions to that. I was never really prepared to do this. But I did it anyway, and here we are, and sometimes we get a moment like we had today when I was looking at a picture of myself from a year ago, when I was bald and smiling into the camera though I felt completely inhuman, and Augie ran up to me yelling, picture of mommy! pretty mommy! As if every two year old son had seen such pictures of his mother, as if that was no stranger than the alternate perspectives shown here, mommy with the long legs and proportionate mommy.

If I had waited, that moment with Augie never would have happened. Here's to hoping something similar will come out of this crazy, potentially stupid, house decision. Some moment that makes the chaos worthwhile, because some strange and specific beauty will come out of it. Look, I'm not being sentimental. I will always be a person who had cancer as a young mother, wife, daughter sister and friend, no matter how long I'm around. My kids will always be the kids of that person. Maybe someday, whether or not I'm around to see it, they will dig deep and remember how our family did what we did during this cancer time, how we just kept looking at the next thing. And they will not be afraid, or they will be, but they won't wait to do whatever it is they're afraid to do.

I have no idea why I sat down to write this blog, because I ended up somewhere entirely different. But that's what I hope for my kids, oddly enough, that they don't go through life with expectations, but rather with the opposite of expectations--that their lives are filled with some slightly off-kilter anticipation. I hope they just go ahead, my God I hope they just DO something. I can't expect to be there to see what it is they do, but then again you never know. Maybe I will be, and wouldn't that be a trip? We'll just have to wait and see.