Friday, November 29, 2013

Day 1,259: Growing Up

At what point do you consider yourself to be an "adult?"

Tina Fey hilariously said that the moment you reach adulthood is a complicated thing but that for her and her friends it mostly boiled down to "men yelling shit from cars."

I laugh, but was I really an adult at 12 years old? No, I don't think so. I think I was an adult before I even technically lost my virginity at 17 (remember when you were a teenager and oral sex "didn't count?" As an adult, you know that's ridiculous and then you adjust your math, so that your sexual coming of age gets lowered to 15). So, that's not what makes a person an adult. Adult situations do not equal adulthood. "Animal house" culture can attest to that.

Is it your first real job? And what is a real job, anyway? I've had jobs since age 11. I worked as a secretary/receptionist/package girl when I was 16. I worked for food money, to help keep the lights on, not just so I could go waste it on some nonsense. I worked at a daycare at age 15 and took care of legions of children for $2.25 an hour. So there's having a career, and some people think that's what makes you grown up, but having jobs that enable you to buy clothes and food and pay bills is also "adult." On the other hand, being a research director at age 29 or traveling the country speaking on panels at age 24 or turning down a job making more money than you had imagined at age 28 is adult as well, especially when you are the youngest person by decades in that situation but you still know how to hold your own.

Is it your first apartment? Well, that depends. How many roommates are involved? Was I an adult at age 22 when I had my own apartment, by myself, because I took a second job as a building manager? Yes, I was. But I had BEEN an adult. For years.

I remember being 15 years old, and it was just my mom and I in the house for good, and one day she asked me if I wanted some coffee and I said yes, and it wasn't drinking the coffee that made me feel like an adult, it was sitting there in silence reading the paper and then talking about stuff that needed doing.

I remember being 16, and walking home from high school and doing my homework. My mom was usually home by 5. So it was 5, then 6, then later. She wasn't home. She hadn't called. I tried her work and she wasn't there. I thought about the stalker I had had earlier that year, some kid we couldn't recognize through his drunken enraged phone calls, the lewd things he said about my body, the fact that he knew what route I took to walk to school; I thought about how the police did nothing but practically roll their eyes about the whole thing. I was worried. There were no cellphones. I envisioned all kinds of horrible things. Eventually she arrived, opening the gate in the back yard as if it were every normal day. I ran outside, she saw me, and she realized what had happened; I could see it in her face. I screamed at her: "I was so worried! You didn't even call! Where the hell where you?" And she sheepishly apologized and explained she was just talking to friends.

I was an adult, right there.

Adulthood is accepting and claiming responsibility. It is being self-sufficient, but even more than that, it is looking out for others. I was an adult in college when I told my roommate that I didn't care who she was sleeping with, but she needed to tell me if she was coming home that night or not, so that I would know she was ok. I was an adult when I saw the look on her face that told me how glad she was that someone gave a shit about her.

I was an adult at age 17, driving my grandfather on errands with my keys swinging from a keychain that read "no condom, no way."

I was an adult when I decided not to apply to the college I really wanted to attend because I knew we couldn't afford it.

I was an adult when I taught my daughter to read and jump rope, when I let her take the video of me riding a bike for the first time at age 35, when I taught my son to throw a spiral and sit on his behind at the dinner table and when I realized he too could read, as long as it was about football or something that interested him for more than a minute.

I was an adult when I took a chance on a guy, and found out he would stick around through all this crap, for almost 11 years now, and counting.

I was an adult, in some ways, since a child, keeping things to myself, handling things, taking care of business, not expecting or desiring help. I was an adult at age 15 when I did perhaps the bravest thing I have ever done. What made me an adult right there was putting aside my own feelings and fears, and saving another person though it was the last thing I wanted to do.

I was in love with a man for years who would tell me that he wished he had known me as a child, because I was just so...OLD, so grown, and what would I have been like in my youth? This man began dating me when I was 17. He still saw me that way, as the girlchild who did things her way and for whom "youth" was more of a timeframe than a lifestyle. We would go to the party together and he would drive me home early, and go back himself, and we would have this conversation that went like this: ok honey, be home before 4 so I don't wonder where you are, and he would say yes baby ok, I will see you soon, and we would later make love and make pancakes and do chores and we were all of what, 21 and 23?

I remember my mother telling me how much she enjoyed being an adult, that she loved to balance the checkbook and pay bills and do the taxes and cook and just be responsible for everyone, that it was a liberating feeling. I thought that was interesting when I was 5.

By the time I was a junior in high school, I agreed with her, because I was doing it...I was grown.

I saved money, bought myself a condo at age 25 and put myself through graduate school--debt free, mind you--all while earning $27k at a nonprofit. I never liked the bar scene. I never liked the dudes who tried to pick me up in various places. I never did things that were too crazy. I figured crazy shit was just bound to happen, so why bring it on myself? Life was interesting enough, just the way it was.

I do not believe that surviving adversity makes you an adult. If that were the case, I would have been a legit adult before I turned 10. I also don't believe that dealing with multiple forms of adversity takes away from the impact of the original trauma. Perhaps it would be a case of "surviving" if you endured sexual abuse just once, but if it happens much more than once, do you lose that moniker? What about having cancer at a young age not once but twice? Does that make you wizened, or just hopeless, that strange woman no one wants to face or acknowledge?

If you are an adult, you realize this: It doesn't matter. What other people think, or say, is immaterial. The question is, what have you done to place yourself and your people in the world, what have you done to alleviate the burden of others?

I have said it here before: I don't understand why people think cancer patients are brave, or inspiring. Some shit happens, and you take care of it. You hope it ends well, but you are old enough to know that might not be the case. You are too grown for magical thinking; you can't remember a time when you had it, actually. The time that has passed since you received this news is just that: the time that has passed. Three and a half years. You are not done with it. You might never be done with it, until you are done, forever and for good. But you cannot live that way, because you owe some normalcy to others. Others who are smaller than you, or younger, or less sure of themselves, others who still rely on you and take comfort in the protection you offer, and even in the notion of you being YOU.

Being an adult means this: putting one foot (or whatever you've got) in front of the other, and walking with your head held high, all the while looking behind you, or underneath you, or in front of you, looking for those who need saving more than you do, because some of those people are right next to you and some you have never met, but they are there, and when you're grown, you can see them everywhere, no matter what has happened, no matter what might happen, no matter what you will never live to see. They are everywhere. And you smile at them, and keep going.

Monday, November 18, 2013

Day 1,248: The Unspoken

I am not in a very good place today. So, if you are looking for an uplifting cancer post (I still don't understand for the life of me why essays about a potentially terminal disease are supposed to be...happy), this probably isn't for you.

I'm sick. I ate some curry yesterday; I had a normal appetite, and there was severe weather with tornadoes touching down close by and time spent hunkering down in the basement with the kids playing fusbol and I just didn't feel like cooking so we ordered in. And then today, I think I have lost two pounds from sickness. This is not food poisoning. This is chemo. I don't know what to eat anymore. I will eat pizza and assume I will get sick and it doesn't happen. Then I eat something that I am normally fine with and get sick as a dog. Most of the time, I am making dinners like baked salmon, cous cous and peas, which is what we will eat tonight. I have always been a person with pretty healthy habits, though I do like my dessert when it's there. So please don't tell me that I have cancer because I have been known to eat pizza. (I hate having to say things like that over and over again, but I am just plain tired of people constantly implying that cancer is not a disease at all, it is just the culmination of all the bad habits we cancer patients supposedly had in the past. I didn't have them, people. A lot of us didn't. This is cell biology gone wrong). And I am extremely busy at work, and with my kids, and I'm just...tired. I actually decided to take a precious half day off this afternoon because of all this; given that I just started a new job on Sept. 1, I don't have many of these days at my disposal.

So feeling sick is getting me down. Not having my period this month is getting me down. But I am also jut having a few days in which I'm feeling down because I am dealing with a heavy load of bullshit, whether I am supposed to admit to that or not. Last night while Gabe was giving the kids a bath, I was downstairs listening to music and I started "crying" which is not normal-person crying but Katy Jacob-crying, so there were a few tears in my eyes that couldn't figure out how to fall. After putting the kids to bed, I told him why I was upset:

"I'm probably just not going to live very long, am I?"

And of course, he didn't know what to say.

This sentence that I said to my husband, who just kissed my hand and sat there looking silently crestfallen, falls in a long line of sentences that are supposed to be unspoken. I have uttered many of these here and out loud in my real corporeal life. They include the following:

No, I don't want you to have a vasectomy. You are a young man. If I die, I want you to be able to have kids with someone else.

I don't believe this was part of any plan. I just think that shit happens, all kinds of shit.

No, I really don't have any of the risk factors, lifestyle, genetic or otherwise, that are known for this disease. And yet I got it anyway. Twice.

The statistics that are thrown out there are lies. Stage 1 breast cancer might be known for 95% survival rates, but that is not true for triple negative disease, and that statistic is a 5 year survival rate only. As many as a third of women with early stage disease will develop metastatic disease, and all of those women will have incurable cancer. I could be one of them. Easily.

Being thin and extremely active and healthy in all other aspects of my life and doing a shit ton of toxic chemo and radiation did not kill my cancer. Neither did acupuncture.

Being young, especially under age 35 at first diagnosis, makes my prognosis much more grim. Not being BRCA+ is probably another negative in my situation.

This is not about being heroic or being a bad ass. This is about survival on the most basic level.

It's very hard to be in this situation with young children. Other people long for the past when their kids were smaller. I long for the future, for choosing high schools and colleges, and weddings and first apartments and even grandchildren, but I often imagine these things without myself being in the picture. I just think of the future they will have, with or without me. And it's hard. I also imagine the other partner or partners I hope my husband would have, and I try not to think about the effect my premature death would have on my mother.

This is not my first flirtation with death. It is my fifth. I have been close to death five times. It is, as they say...enough.

This is also not my first flirtation with physical disability. I have had a lot of bad things happen to my body. It's not as if you are only given one trial. Some people are tried all their lives. There is no reason why I would not be one of those people, and there is no reason you deserve to NOT be one of those people any more than I do.

I've got a gun at my head, all the time. The first question is whether the man holding it (I always imagine that it's a man) will pull the trigger. The second question is, if he does, how long will it take to die?

I hate putting disclaimers in my blog, like the following, but I feel some obligation to do so, because otherwise people will shun me. It's just a fact:

None of this means that I am a depressed person sitting here thinking dire thoughts. Most of the time I am watching football, working, telling my kids to get shit done, chatting with friends, cooking, going to the gym, not thinking about cancer at all. But these unspoken words and sentences can be like an albatross around the cancer patient's neck. No one wants to hear it, but it's hard to just keep it all in your head. So you just need to cut off the albatross' legs and listen to it scream.

That's it. That's all I've got today. Wounded birds and unspoken thoughts, both being released into the cloud.

Friday, November 8, 2013

Day 1,238: Living with Dying

I've noticed on various social media sites that people have been writing about what they are thankful for this month. I'm thankful for many things, but I am especially thankful for all of the people who don't tell me how I should behave, who don't question the "decisions" I've made through two bouts of cancer under age 40, who don't make me feel like this whole mess is all my fault.

I say this because there are a lot of people out there like this, who say unfeeling things, terrible things really, out of what I can only assume is their own fear. People tell you that you should have done things differently, that you could have avoided cancer if you had been skinnier (size 0, anyone?), if you ate better (better than home cooked meals every day?), if you exercised more (more than 2-3 hours every day?), if you were happier, funnier, if you danced more, if you went to church, if you had never had a drink or a smoke or sex with someone you weren't married to, if you had only been different from yourself, then cancer would have left you alone. They tell you that chemo is stupid, that the power of your mind will erase your cancer, that kale will save you, that you have the ability to will your cells into cooperation. They say these things because of their own fear, their fear of YOU, and what you represent. You represent the thing that could happen to them, no matter what they do. You represent the person who is healthy, yet not healthy. The person who looks younger than she is by years, though her body has been made older than she is by more years than that. You represent the person who was supposed to win, and lost.

So I am thankful for all the people who have let me be myself, and who don't try to erase the difficult parts of what that means. Because what we all do--all of those of us who have had something like cancer, or a terrible accident, befall us, is this: we live with dying.

We live with not just the thought of it, the esoteric sense of the fact that none of us is getting out of here alive, but with the reality of it.

We go to chemo, and we sit in chairs next to women who are dying of the same disease we have had, that disease that has refused to leave some of us alone, for years--since 2006 probably, that neither chemo nor radiation nor surgery nor exercise nor awesomeness could cure. And we know that we can't use the specter of those skeletal women, who are cold, and alone, and resigned, and amazing, to make this be about us. The fact of those women dying is not about me and what I fear for myself. They are entitled to their own dying, as it is, on their own terms. But this is what we do. We make friends with women who have the same disease we have, and some of those women die. They do not die beautifully or admirably. They die, and it's ugly and painful and it's not fair and they leave legions of people reeling in their wake. And we live knowing that might be us--almost expecting that it will be, actually. I try to look into my future, imagine my old age, and I cannot do it. I think about my surgeon looking happily at my reconstructed "breast," and telling me it looks wonderful, and that when I'm 80 I will have one perky breast and one that sags halfway down my chest. I see the look in her eyes when she says "when you're 80" and I know she says that to comfort me because we both know there's a high chance that will never come to pass. I live with this every day, all the time, this knowledge that my exit might be premature. I also live with the knowledge of what might come to pass before that exit is made--and it's not pretty, folks.

This acknowledgment does not mean I am depressed, or negative, or that I have the wrong attitude. I have the right attitude for the circumstances. I know how to live with the notion of dying, and I know how not to avoid people who are dying, even if they remind me of the self I hope I never have to witness. I could take myself out of painful circumstances, I could avoid getting to know terminally ill women with breast cancer, but then what would that prove? Would I want people to do that to me, just because I was going to die and it was hard for them to accept it? No, I would not. It bothers me that this has happened to me already--I have lost friends, been isolated from people, learned to focus on my little family and my close inner circle of friends, because people live in fear of me and what I represent. They have left me, ignored me, passed me by. I do not dwell on it, but I know better than to become one of those people myself.

It might be hard to have body parts amputated and to poison yourself, but it is harder still to live with what those things represent. And so it is that as we live with the certainty of death, and the possibility of death coming too soon, there are those of us who say this: It's coming, and it might be just around the corner for all I know, but it's not here yet. I'm still here, still alive, still young, still me, and I'm not dead yet. Not yet.

Monday, November 4, 2013

Day 1,234: Co-Pilot

I haven't been here in a while. I haven't had much to say about cancer. I haven't felt much about cancer either. I'm just living my life, and my life is very busy with a new job and little kids and then, the chemo and everything. I don't think about cancer that much, which might surprise you. I do think about life a lot though, and cancer might have something to do with that pondering, but it might not--that might just be Katy being Katy like she's always been since a child.

I've been thinking about relationships, and marriage, recently. I wrote a really short blog post for my 9 year anniversary, but that's not what I mean.

I've been thinking about how happy I am not to be dating, since I'm not sure I was ever very good at it, even though I had a lot of practice from about age 12 on, but also since I'm happy to be in this stable place in my life.

I've been thinking about what people think they want in a partner, what they think they don't want, and what they think they need and don't need.

No one needs to get married. No one needs one partner. It's a choice, not a requirement. Lots of people lead happy lives by themselves or with multiple partners or what have you. I never had a vision of myself being married; in fact, when I used to think about myself having kids, I always envisioned myself as a single mom. This life I lead takes me by surprise, and it takes my husband by surprise too, I'm sure. We both had grown-people problems as teenagers, we both grew up in strange circumstances (him much more than me), we both had suffered in our youth and faced the notion that life was just hard before anyone had to tell us.

We both probably had our ideas about what we WANTED in a person, what we didn't want, etc. There are so many qualities in people that you can enjoy and desire and be repelled by and despise. So much of that is immaterial. If you do make the decision to lock it down with one person, what does that mean? Who should it be, who should you be, how should you both behave? What are you supposed to give to each other?

Many people have this belief that going through something like cancer makes you stronger as a couple. I've been pretty clear that I don't think that is necessarily the case. Cancer has made me less patient, less tolerant of bullshit, and it has brought us to some very dark places that neither of us ever wanted to visit. But on the other hand, cancer has in some ways shown me the bare-bones version of what a marriage IS.

Forget what you want. Forget what you think you need. If you are in a lifelong or semi-permanent or committed relationship with another person, what you should be for that person is this:

You should be a co-pilot, a partner in crime, a second--a lieutenant.

You should be able to step in and do what needs to be done even when it's the last thing you want to do. You should be the one driving the getaway car, even if you're bound to get caught. You should be the one who remembers things, things as they used to be or things that happened when you were younger or things that never happened but that you wish happened, like knowing each other since you were children, because wouldn't that be something?

You should be this one (from July, 2010):

I have just spent the last hour with my husband, having my little buzz shaved off for good. I really liked it for the two weeks that I had it, more than I expected. I felt comfortable going out in public with it. But I couldn't stand how it was coming out constantly, even while I was brushing my teeth, even while I was wearing a scarf. My head was hurting all the time with the little hairs pulling, making it hard to sleep. I was starting to look like I had mange. So Gabe got his new clipper set out and went to work. I just looked more ridiculously mangy and we both agreed that wasn't good. So then he got out the Barbasol and safety razor and started a long slow process of shaving my head smooth. I started to cry those dry tears and I'll admit I'm doing it even as I write. What kind of fucking medicine makes it so that you can't even really cry? Gabe is more of a crier than me by a large magnitude, so that started him off as well. There we were in the bathroom, both crying, hair all over the floor, my hair all over his shirt. He said he never had a father to teach him to do this right (to which I wanted to say, do fathers and sons often shave each others' heads? but you know, I don't have an answer, being a girl), and even if he had, he never in a million years could have pictured himself doing this with me.

There's the whole in sickness and in health part of your marriage vows. But then there's standing in your basement bathroom with your wife wrapped in a towel, sitting on a stool, while you shave off all of what's left of what used to be her really pretty hair and then you take the expensive after shave that your mother in law gave you for christmas years ago and rub it all over her head, feeling guilty that you gave her razor burn. And you tell her that she looks sexy, though she knows that's a lie.

And, on the flip side, you should be the one who recognizes this:

But there is something about (the experience of Gabe shaving my head) that sticks with me, thinking about it now. I interpreted Gabe's comment about his father, or lack thereof, as being probably deeper than it was. He wasn't talking about some life lesson he never learned. I think he was saying that he had never learned how to use men's clippers before; that should have been obvious since he was reading the instruction manual before he attempted a hack job on his own hair. I think he was saying, hey, I don't know what I'm doing, I've never used these before, because no one ever showed me how. Once the attempt to clip my buzz failed, he actually gave himself a very nice haircut.

I'm thinking about the days when Gabe doesn't use the electric razor on his face and goes for the Bic. It's often not a pretty sight. There are cuts, bloody kleenex on his face, razor burn that lasts for days. Three days ago he shaved my entire head--huge heaps of short thick hair--with a disposable razor and a 79 cent can of shaving cream. And I had not one nick, not one spot of blood. My razor burn was gone within an hour.

It doesn't impress me that he shaved my head, that we cried, that it was hard. The image I'm keeping is of me sitting still, watching the whole thing in the mirror. What I couldn't see, the part that really means something to me, is his perfectly steady hand.

You might want a lot of things, you might think there are needs that people can fulfill for you, but you would be wrong. Cancer has taught me a few things, I suppose. What we all could use is a person who can do hard things gently. We could all use a co-pilot, a person who tries to save you both when you are unable to save yourself, because he volunteered, because that's what the job required, because he wanted to play a role in how the story ended, because what you do together is life and death and all the things in between.