Wednesday, June 26, 2013

Day 1,099: Atomic Girl

When I go on vacation, I bring a lot of books with me. I always think that I bring too many books, actually, and that it is unrealistic that I will read them all. And then I arrive at my destination, and I finish the first book in 24 hours, and then I'm glad that my "over-packing" involves books and not, say, cosmetics.

The other day I read this book called The Girls of Atomic City, about women who worked at the secret city/military-industrial complex in Oak Ridge, TN, at the end of World War II, unwittingly working on the development of the atomic bomb. This book is a great, fast read. It could have been MORE--more what, I'm not sure, but even so, it was interesting and got me thinking.

First of all, I have always wondered what it must have been like for the Rosie Riveters of the 40s to be expected to turn into the June Cleavers of the 50s. This book is filled with stories of women who were chemists or statisticians (one woman became a statistician because she wasn't allowed in the engineering program at the U of TN, even though she had taken lots of engineering and science courses at community college; she was told women couldn't be engineers, so what about statistics? and she was all, ok you bastards, and became this kick-ass statistician) and finally got to earn some good money and get decent promotions through this government program. Girls who had just graduated from rural high schools in Tennessee, Alabama, and didn't want to get married or pick cotton, so they manned the "cubicles" that did things they couldn't have dreamed of in their wildest imagination, though they learned to never ask. They left the only town they had ever known and took a train to an unknown destination, to work an unknown job for an undisclosed amount of time, and arrived in a city that had just been built where they were knee deep in mud all the time and they weren't allowed to tell anyone, even their parents, where they were, what they did all day, or who they met while they were there. Some of them met their husbands there, among the legions of young GIs and construction workers and scientists who descended on the town, and then all of a sudden they were married and got pregnant and they had to quit, just like that. Now, these women wanted to have families; they loved the huge number of young, unmarried men they had access to in the secret city, and they wanted to raise their kids and be housewives and all of that. But then they were exposed to this other life, and they had to switch gears so quickly. It must have been strange.

And then there's the fact that all these people were working around the most toxic material that had ever been developed in the history of mankind. Some of them developed disease, I'm sure. But many did not, and they lived to be old. There is a side story in the book about a black man who was in a car accident at Oak Ridge, and he almost died and was induced into a coma at the hospital. So, they decided to do medical experiments on him and began injecting him with plutonium--straight into his veins!--removing his teeth and bone fragments and pieces of organ and skin (while he was still alive, of course) to see what the hell would happen. He is one of 18 known human experiments from the various war plants at the time, and at some point he fled the base, and he died 8 years later. This story is disgusting, though not entirely surprising. The part that surprised me the most was the fact that he lived for 8 years after being injected with huge amounts of plutonium.

And then there's this strange knowledge that some of us live with, that we are the recipients of medical knowledge that was gleaned through atrocities like those as well as from human experiments done on knowing subjects, who volunteered their bodies to see if this new technology, this use of radiation, could be used for good rather than evil. We are indebted to them, even if the methods that we used were ineffective, even if one day everyone decides that the way we treat cancer is insane and barbaric and just plain stupid. You can tell me about all of the coffee enemas in the world, but the fact is that chemo and radiation have saved a lot of people's lives. These methods have done little to nothing for other people--it's true. Right now, it's hard to know who is who, but progress is being made. Hell, progress has been made in the few short years since my own diagnosis, as now women with breast cancer--especially triple negative breast cancer--are put on chemo cocktails first (or for non-TNBC, not at all) to see which methods work to shrink their tumors. In three short years they have learned that different drugs--those normally used to treat ovarian cancer--are the most effective in some TNBC cancers.

Yes, we know that we are supposed to exercise, and eat healthy, and avoid toxic chemicals to the point that we can when we live in urban industrial areas. But then again, so are you. It doesn't help us, especially those of us for whom there are no known treatments outside of chemo and radiation, for you to tell us that big pharma's out to get us. I hear this all the time, and it just makes me tired. Look. There are things that I know about my risk factors that even my doctors don't think about regularly. One major risk factor for breast cancer before age 40 is having a CT scan in the upper area of the body/head when you are young. Well, I had several of them when I was 6 years old and they were trying to see if my seizures were caused by a brain tumor or something else. I should have just had the one, but I was used as a medical experiment in a sense, which led to extra radiation exposure. The doctors were supposed to wait until my mom came back; she went to find a sitter for my brother. In the few minutes she was gone, a grown man, a doctor, walked up to me and told me to come with him. I said no, that I wanted to wait for my mom. He told me it would be fine. I went with him, even though I didn't want to go. I went into this big room, and there were at least a dozen adults in there. I know now that they were medical students, but I had no idea what the hell was going on at the time. They put me on a table and covered my tiny body--I probably weighed 35 pounds when I was six--with this huge lead blanket that felt like it was crushing me. Then they started to move me into this alien-torture chamber-looking machine, and before my head and torso were placed all the way into the machine, I heard this:


OK, good luck with that. I was 6. The lead blanket was making me nauseous. These weird people were looking at me. My parents weren't there. I tried not to move, but I failed, and I moved my head slightly, and then they had to start all over again. I probably had 5 CT scans.

Through my whole ordeal with epilepsy from age 6 to 17, that was the single most traumatic thing that happened to me. I still remember it like it was yesterday. And, I recognize that it might not be the sole cause by any means, but it greatly increased my risk of cancer later in life.

I don't harbor resentment; I had to have the CT scan to find out if I had pediatric brain cancer. But, if the doctors had only listened, I could have just had one.

I took toxic medication for that disease, and I had to do it. Epilepsy is rarely helped by things like diet, except for a tiny percentage of patients, of which I was not one. The medicine worked for me, though it trashed my liver. That was a better outcome than the brain damage I might have had, and the loss of independence I definitely would have had, if the medication had not worked.

And so, I have always been glad that there were people who went before me who were willing to put themselves out there so that others of us might live longer or healthier lives. And I have known that to some extent, I am still a medical experiment. Some day, we might learn that the things I've done, that others have done, in the name of cancer treatment, were ineffective. We know for a fact that they are dangerous. Don't believe that cancer patients are unaware of this. The chemo cocktail I did included a variant of mustard gas and a drug so toxic it can stop your heart. It included an extract of a tree bark that if ingested in the wild would immediately kill you. These drugs can do damage to just about every healthy part of your body. And then, if you're lucky, like me, you can seemingly rise from the ashes of all of that with a body that seems better than ever.

Don't think we don't know what we're doing when we lie on the radiation table. In order to do that, there is a certain amount of denial that is necessary. You are lying in a strange position, with positioners placed just so, and sharpie, tape and tattoos all over your chest. The technicians are kind, and you are there of your own accord, but still, the last thing they say to you before they leave the room so they don't die an early death from radiation exposure, is


Your cancer is on the left side, so there's a sliver of your heart that is radiated. You know this. You try not to think about it, as the surreal experience begins. There is a laser, a green light. It points at your body. You look up at the ceiling, which is decorated with some kind of mural. You hear a low, constant, buzzing. It could be a bug zapper. You would like to think that, but you know that it is radiation. It doesn't hurt. Your skin looks normal for the first five weeks. You are almost fanatical in your use of Aveeno baby wash and Aquaphor; you buy tons of tank tops to wear over the goop that constantly covers your torso so that you don't ruin your regular clothes. But still, the skin eventually turns pink, and you have that sunburn; remnants of that sunburn will stay on your skin for almost a full year. But you never burn badly, and everyone is pleased. The technicians tell you that this is because you are thin; after all, it's like deep-frying a turkey, you know, the fat burns hottest. And you realize that it is November and people have Thanksgiving on the brain, and your body is like that, a bunch of meat and bone and gristle, and you aren't even offended, even if you think their theory sounds like complete bullshit. Your pectoral muscle is never the same. It still hurts sometimes to push on your ribcage on that side.

You could not do this if you thought about it too deeply. But that is true with so much of medicine; unfortunately, many people take drugs that are more toxic than they realize, for conditions that the drugs were not even intended to treat. This is how we end up in a situation where they prescribe anti-psychotic medications such as Lorazepam for conditions like chemo-induced nausea. Some of us refuse all medications except for the ones we are unable to refuse--the chemo itself and the minimum level of drugs required to enable the body to absorb the poison. Others use every side effect medication given to them in order to make it through. Some of us are radioactive. It's not just the radiation itself; some procedures that are done prior to surgery or chemo use radioactive dye, for example; I remember one procedure where I asked about the dye and they told me "oh well, it will dissipate within 8 hours and then you will be able to be around your children."

OK, well, there it is.

It's easy to judge if you haven't been there. It's also easy to gloss over things and act as if cancer treatment is in the past, even though we all know that its effects, even if successful, might be permanent and even deadly. It's easy to forget that cancer was trying to kill me right then, three years ago, aggressively. I might not make it out of this mess in the long term, and the treatments I took might eventually take their toll, but what I hear in that statement and what you hear might be two different things. The only thing I hear is this:

Not yet.

So, here I am, this strangely healthy vital person, and my body is a walking testament to science, the good and the bad. My body is a continued experiment, as it always has been in some ways, since I was a little kid. For now, I am still on the winning end of science, and yes, I know I can take some credit for that by being fit and healthy overall. But I was fit and healthy when my brain misfired more than 100 times a day, and when three tumors popped up out of nowhere. I will take credit for what I can control, and I will also marvel in the world we live in, when some of the most horrible events in human history could lead to the possibility of this, this manifestation of unforeseen possibilities, this fact of me sitting here writing this, me, this Atomic Girl, living like so many others who laugh in the face of death, but laugh all the same.

Thursday, June 20, 2013

Day 1,093: Bonding with My Gynecologist

In addition to the million things I need to do at work and at home before I go on vacation, there are some health-related things that need attention. I haven't gone to the dentist since the fall, for example, but my teeth and the teeth of my family are just going to have to be on the losing end of the crazy-train that is our hectic family schedule. I did prioritize getting my annual pelvic exam and pap, however. Even as medical standards are changing and encouraging healthy women, especially the rare minority of us who are HPV negative, to avoid unnecessary paps, I will always be raising my hand and volunteering for one anyway.

What other excuse do I have to visit my gynecologist?

I mean, my husband had a vasectomy. I can't call in and say that I'm afraid I'm pregnant. Well, I could, but then I'd have bigger problems and my husband would probably get kind of mad at me. I don't need regular breast exams, because I get 93 of those a year from my cancer doctors. So, I need some reason to visit the man, because...

I really, really like my gynecologist.

He's a strange one. He's big and swarthy and gruff and can be absentminded, or seemingly so. The first time I met him, I was planning to get pregnant and was just doing the "am I healthy enough to get pregnant" exam. While I was lying on the exam table, I told him about my history with epilepsy and asked if I should be concerned about anything related to pregnancy. He thought I meant that I was concerned that the baby could have epilepsy, and he asked me some version of "well wouldn't you have the baby anyway?" and I was like, whoa Doc of course I would, after all I'm glad my parents had me. I explained that I was worried that I could start to have seizures again, because those types of hormone changes can have a big effect on women with epilepsy. He stared at me blankly, and left the room without saying anything.

The man left me there, with my feet in the stirrups, naked from the waist down, and he didn't even SAY anything.

I had rarely been so furious with a doctor. When he came back in the room I was ready to unleash all kinds of fury on him. Then he told me that he was sorry it took so long but he was on the phone with his three favorite neurologists asking them questions so that he could adequately answer my question and that I shouldn't have anything to worry about and it would all be fine.

I've kind of loved him ever since.

I know it sounds weird. Shouldn't I have remained angry? Well, no. It was one of the first times that I heard a doctor admit that he didn't know the answer. It was definitely the first time I had seen one work so damn hard to find the answer he didn't know right then and there. And as I was to soon learn, I wasn't wrong in sensing a larger empathy that this awkward situation unveiled. During both of my pregnancies, I never spoke to a nurse, not once. He would call me back anytime, from any place. He always listened to my questions and concerns and never acted as if I was being overly dramatic, even when I was being overly dramatic. He delivered my daughter, while doing pushups on the wall and punching my husband regularly in the arm. He cruelly stopped my epidural drip because I was pushing for so long and he didn't want me to have to have a c-section. He practically bullied me into that final push by threatening to get the forceps. Some women would have hated him for all of this, but all of this worked perfectly for me. I was like, goddamn it doc FINE. And then Lenny was born. He saw how exhausted I was after that difficult delivery and he told me that if I didn't mind, he would remove the placenta for me. He literally reached his enormous hand inside my body and pulled the placenta out in one piece and showed it to me and I was all, thanks doc, I was a little tired. He visited us in the hospital on his day off, just as he did after Augie was born, delivered by a different doctor because he was 3 weeks early and my doctor was delivering babies in another hospital that day.

He's the one who told me at my six week post-natal appointment after having Lenny that everything looked great and if I wanted to I could start having sex again. He actually said the following words to me: "It's gonna hurt though. You had a stitch. I'm just warning you. One of my patients once told me (laughing) that that first time, you basically just need to hold onto the headboard and take one for the team. And use lots of lube." Hands down best and most practical advice I've ever been given by a doctor. After Augie was born and I felt amazing and had so much energy I could've just gone and done the whole thing again right away, he went through a similar speech at six weeks. This time he said "now is your husband pressuring you? Look, I'm sure he'll do whatever the hell you want. He didn't just have a baby. Tell him to calm down." I didn't have the heart to tell him we had already started having sex 3 weeks after the baby was born and that everything was fine and that sexual pressure was not a part of my marriage. I'm glad he said that kind of thing to me, because I know a lot of women who deal with that in their marriages, and thank God some doctor somewhere has their backs.

And then, he gave me an order for an ultrasound for a hardness in my lactating breast that most other doctors would have said was nothing. He found out before I did that I had cancer, and he called me with his voice breaking to see if I had "heard anything." Once my diagnosis was official, he checked up on me. He called me on the weekend a few times. He told me I'd be around in 10 years. He cried.

He was the one who told me I had saved my own life.

Now, when he sees me--for these annual exams--the visit is 75% social, 25% medical. When you're 100% buck-naked and sitting there reading about Jennifer Aniston's non-wedding in People magazine and this big man walks in the room and removes your gown and then says "Holy shit! Look at you! You look so thin! You look great!" it could be awkward, but somehow it's not. All the cancer doctors always say "you look great," but this dude gets specific. In that office I'm thin! and fit! and stylish! and oh my God I love your hair!

And then it's Did your husband get that damn vasectomy? (there's lots of swearing in his office. I love it). and How are your kids? Do you have pictures? All of this is happening while he is using his enormous hands and equally enormous speculum to do these various internal exams and you are conversing as if you're sitting on a patio somewhere drinking Coronas.

And then you have to go and bring medicine into it. Well Doc, there is a spot I want you to feel. I had my mammogram last month and they found this calcification, so this could be it (WAIT! why didn't I see that mammogram report? Um, I don't know I told them to put you on the list. WELL THEY DIDN'T! DAMN IT!) but anyway I feel this hardness right by my scar, and in the last few days it has really started hurting. It hurts when I touch it and it hurts when I sleep on that side. My husband felt it too.

Commence 97 breast exams done by him alone. He feels what I feel. He feels it seemingly hundreds of ways in seemingly millions of positions. He actually looks at me at one point and says "You must get tired of people feeling your breasts all the time."

Amen, honey.

He said that it felt like a cyst, or scar tissue, not like a separate distinct mass. He also told me to go to my surgeon, especially if I didn't notice it before a few weeks ago. He said he wasn't worried about me, but he was worried that I would worry needlessly. And as he suggested I contact the cancer docs he said this:

Look, they don't get it. They aren't a 35 year old or 37 year old worrying about breast cancer. They see thousands of people. They care about you but in a medical way. This is your body and your disease. If you need to get something checked out, you're smart, go do it. Enjoy your vacation. I will get your mammogram report and I will call you this afternoon and read to you exactly what it says (which he did) and I will tell you right now that I could not feel calcifications, so that's not what this is. IT feels like normal post-surgery and radiation changes to me. But I want you to go in after you get back from vacation. If they are too busy (when I called I was told my surgeon was booked for the REST OF THE YEAR. I raised hell and got a July appointment) tell them I said you need to go. Look. I care about you differently. I don't know, maybe it's because of your deliveries. It's because I have a different relationship. Because of the babies. Because I don't deal with breast cancer 24/7. Because you had this damn disease and it's scary and you're normal to be scared. You want someone to tell you you will be alive in 50 years and no one can tell you that. But no one can tell me that either. (But doc, it's a lot less likely that some of us will get there, though). Well goddamn it that's true. You had this disease. You have to live with it. I don't and they don't. They know what it's like to see people with this but not to BE those people. It was aggressive. It's bullshit. I think you're fine. But you worry. I hate to see you worry. And you're going to the north woods? My son is in camp near Rhinelander. Your daughter looks exactly like you, like a clone. She's beautiful.

Commence enormous bear hug and kiss on the top of the head like your grandpa used to do when you were little. I'm going to call you this afternoon. Promise me you'll have a good trip. Promise me you'll call them.

OK, promise.

I'm worried and I'm not, I'm scared and I'm not, it hurts and that bothers me but it also makes me feel a little better because cancer doesn't usually hurt, I'm dying to go on vacation and I have too much going on at work and at home and with the kids and sometimes I feel like a cog in various machines.

But I'm not--I'm a real live person, a woman who is still on the young side, a woman who is sometimes convinced she beat the beast and sometimes convinced she wasn't meant to live a long life anyway. If you are a doctor, or a regular person who has found out someone you know or love has cancer, and you don't know what to say, do me a favor and think of this strange, eccentric man. And say, I hear you. I'm so sorry. How scary. What bullshit. I care about you.

And above all else, do what he has always done. Keep your promise. I had to leave a meeting to take his call. He didn't even announce himself, he just launched into the mammogram reading. He reminded me to make the appointment. And then he said

Take care. Sweetie? Take care.


Sunday, June 16, 2013

Day 1,089: Learning the Ropes: On Father's Day

Luckily, not everything in life is learned by example. If it was, we'd all be out of luck over here.

I haven't been the best wife recently. I failed to write a post for my husband's 38th birthday on Friday. Hell, I wasn't even HERE on Friday; I was on a business trip in Atlanta. Once I got home from the airport that night, we went out for a quick dinner and a game of mini-golf. Yes, I am married to the guy who wants to go mini-golfing with me and the kids on his birthday. Last night we went on a double date; a feat so rare I'm not exactly sure that it really happened. I didn't know what to get him for his birthday or for Father's day, because he's impossible to buy for, so I got him some clothes and baked him his favorite muffins AND a chocolate cake this morning and bought a few of the least-ridiculous cards.

And now I'm writing this, the first Father's day post I've ever done in this forum. Maybe that makes up for the missing birthday one. I haven't had any motivation to write anything at all of late, and I wasn't sure what to say today. And then I saw all of the posts on social media about people thanking their fathers for being great influences, saying they don't know where they would be without their dads, and I thought this:

You might have been just fine. You might have turned out all right.

What does my husband know of fatherhood by example? Nothing. He's never met his father. He had some important father figures--his grandfather, other people's fathers, boyfriends of his mother. To me, the important thing about those people was not just that they stepped in the way they did, but that Gabe could see that that is what they were doing, and appreciate it and accept them as being family in the way that people who are not blessed with "normal" families create families.

I don't think I could be successfully married to someone from a "normal" family, not realistically. What would we have to say to each other?

We have some photographs on our piano of two young women, college-aged, whom I always refer to as Gabe's nieces. They are not his nieces at all. They are the children of a man whom Gabe's mother dated when he was 6 years old, who spent a lot of time with Gabe for the rest of his childhood and adolescence, and who until a few years ago drove out to Chicago every year to visit our family from California in his RV. He sends cards at Christmas and on birthdays. He's the one who mailed us the only existing pictures of Gabe playing soccer, of Gabe's 2nd grade class. Sometimes Gabe calls him for advice.

Happy father's day to all those kinds of fathers, the ones who aren't anybody's father at all, and the ones who are somebody's father but take in somebody else's kids too because they know it needs to be done.

It is easy to overlook that which seems given. Your parents are supposed to love you and look out for you. It is easy to take that for granted. It is much harder to forget those who had no obligation to you but stepped up to the plate anyway. We were visiting with one of Gabe's childhood friends from California recently, and he said something to Gabe about how he did a good job of basically raising himself. And Gabe said no, I had a lot of help from people like you who just let me hang around all the time. And I thought, they're both right. I thought about the friend of Gabe's who got married several years back, and when I was getting a tour of their house, his mother said, and here's Gabe's room, because that's where he lived for a year and a half in high school. We have been together more than ten years, and I just asked him the other day how that happened. He said, well the first time, my mom asked, because we were losing the apartment. That was just for a few months. The second time, I asked if I could stay there, because I didn't have anywhere else to go.

I thought about a 16 year old boy swallowing his pride and asking for a place to live, and then I realized he didn't swallow his pride at all, because he felt no compunction about doing what needed to be done.

Like changing diapers when he had never done it. Or always being the one to feed his infant daughter her bottle, because she was a terrible nurser and his wife was always pumping new milk while he fed her the refrigerated milk. Like getting up every single time his son woke to nurse, just because he was used to doing it, and changing him and handing him to his wife and sitting on the floor until they were done though he could have gone back to bed. Like taking the entire paternity leave allotted to him and staying home with the baby for a month by himself even though none of his colleague's understood that. Like rejecting a promotion because it would have taken time away from his family. Like always being the one to take the kids places. Like having kids soon into the marriage even though he wasn't sure he wanted to, because his wife didn't want to be any older when she had kids. Like getting a vasectomy.

People always like to talk about things that we learn from others, and as parents I believe we over-inflate the importance of our influence on our children. Children need to be loved and to feel secure. Some children never receive those gifts, and many of those children become lost as adults. Other children find those things where they find it, and still others go asking for it, and in the process help to save themselves. Gabe and I are both the kind of people who have had some vital foundational love but who also went looking for what we needed when things got strange. Some of those children who figure out how to cobble it all together grow up and say yes, let's buy a big house right when one of us just finished cancer treatment, let's do it not just to move on to another stage in our lives but because someday we're going to take in at least one kid, right? One day we are going to parent someone else's kid--it's a GIVEN--and it would be nice to have a lot of space to do that.

People also like to say that things are meant to happen. But how could that be? How could it be that people are meant to suffer the way they do? One of the only presents I intend to give Gabe today is an essay I wrote about him based on one of the sadder aspects of his childhood, something we learned about when we visited the co-op in Wisconsin where his mom lived after he was born. I'm sorry, but things that happen to children--to BABIES--that threaten their lives are not meant to happen.

And people who meet and love and marry aren't meant to be either. Are Gabe and I meant to be? Who knows? Who cares? When we met I would say that I thought he wasn't my type--even though I don't HAVE a type. But I thought there was something there...some POTENTIAL. For what? For this? I have no idea. Sometimes, I can't stand him. We have almost gotten divorced a few times, including right after we got married when he had a terrible time adjusting to what he called the "pressures" of being married. He seemed terrified of failing at something he didn't understand. He seemed to feel the same way about having a boy; he loved being a father to a girl and wondered how he could ever parent a boy child, when he wasn't characteristically "guy-like" himself. After all, he is the sentimental one, the one who cries, the one who is nurturing. I told him that he would love our son because he was our kid, and that it would be the same as it was with our daughter. He didn't believe me, and I honestly think he wasn't that excited about Augie being born. And then he was born, and now he is four, and he is that boy with that dad who calls him sweetie and coddles him a little too much.

It would be difficult for a woman like me to be married to a different type of man, because then how would we balance each other out?

But of course it wasn't destined. We chose this. It would be possible to feel passion and lust and love and friendship for a thousand other people. It would be possible to be attracted to someone entirely different, or lots of someones. Of course it is possible. Some people live for that excitement, the excitement of the chase, of getting to know someone for the first time.

Those people are missing out on their own marriages.

We are always getting to know someone for the first time.

As a parent, one of the great pleasures lies in seeing other human beings learn to do things that seem conceptually impossible until they take that leap of faith and do them: walk, talk, dress and feed themselves, and basically everything else that there is to do and learn. This type of observation can help us observe the same types of things in adults.

Yes, there is the laughter and sex when you're dating. There is adventure and putting your best foot forward. Hopefully, those things exist in marriage as well. Every time you think you might get something more interesting somewhere else, think of it this way:

There are a lot of people who are attractive and interesting and intelligent and funny and sexy. But there is one, right there, who is those things and who also sings your kids to sleep in the middle of the night and shaves your head with a Bic and a can of Barbasol.

It wasn't meant to be, because no one could see it coming. But here we are, all the same.

Happy father's day, Gabe. Here's to learning as we go along.

Sunday, June 2, 2013

Day 1,075: National Cancer Survivor Day

It's National Cancer Survivor Day. This is a day that is set aside to celebrate the lives of cancer survivors. Since cancer isn't like a single point in time situation, I'm never sure what to make of these days; it's possible to survive cancer and then, you know, not survive it anymore.

Not to be a Debbie Downer or anything.

Being a cancer survivor is hard. I'm not saying that it's hard because of the physical changes the disease brings to you, the risks, the fear, the isolation and lost friendships, the insecurity, the heavy shit you have to talk to your family about, the ongoing tests, the money it costs, the lack of health insurance available to you, and on and on. I mean it's hard--like, it's WORK.

There are a lot of people telling cancer survivors how they should live their lives. There are a lot of "right" ways to be a cancer survivor. To be safe, one should presumably be growing all of his own food, dedicating enormous amounts of time to exercise, going to church regularly and removing all cussing from her life, and abstaining from everything that might bring one iota of risk into this already fragile state of affairs. In fact, from what I've read, including from sources that exist in order to support people like me, being the right kind of cancer survivor is basically a full-time job. There is always something new that can give you cancer, and all the old things can still give you cancer, and you could spend huge amounts of time avoiding things or ingesting things or researching things to try to stave off something that is difficult to understand. Even organizations such as the World Cancer Research Fund, which puts out statistics on how to "prevent" cancer naturally (one of my biggest pet peeves as a professional researcher--no one should be talking about cancer prevention, only risk reduction. the nomenclature is simply inaccurate) and puts the fear of God into people about what they should and shouldn't eat and drink and do and think about, estimates that (in it's opinion) about a third of cancers could be "prevented" through lifestyle changes.

That leaves the majority of folks who are cancer survivors--fully two thirds--out of luck, even by their estimation.

I don't think the average person has any idea how much pressure there is on cancer survivors to be perfect all the time, lest you bring that shit on yourself again; this is done under the guise of "empowerment" but it can feel debilitating, especially if you were living a healthy and fit life before the shit hit the fan. And it can be hard work, made more difficult by the expectation of constant happiness and wisdom and Zen-like understanding of the universe that we have all achieved, what with all all the joy and perspective that we never had before when we were all just pain in the ass whiners who didn't appreciate life.

I'm glad there's a day to think about cancer--especially since it's broader than breast cancer and there's no pink or crass statements about boobs. I'm glad there's a cancer day with no one telling me I'm beautiful "anyway." So, that's cool.

But here's the thing.

I don't feel different, at least not in the ways I'm supposed to feel different. If I have changed my perspective and my overall motivation, it hasn't happened in the ways that the books recommend. I've probably been living more fully in the moment, more completely in my body, than the vast majority of people ever will, but that's been true for almost 30 years, and it wasn't cancer that gave me that gift. I don't love my family more because of cancer. I always loved them. I'm not more interesting because of cancer. If I am interesting, it's because of something that was always there within me. I have made some friends because of cancer, but I have lost others because of it. I have held onto my job, but probably by the skin of my teeth. Cancer is a challenge, and you don't get to choose whether or not to rise to it. Cancer is like all other struggles in life--it involves suffering, and you hope to get through it, you hope to be able to look back on it like it's the past, but not all suffering turns out that way. It is, by definition, a disease that greatly reduces your life expectancy, even if you survive it on the first go-around.

So yes, let's celebrate life. Let's celebrate it like we always have, like we always did before, like we promise to do in the future. Let's live the way we are meant to live; this is something I learned at nine. And how are we meant to live?

Not as if death is not coming, but as if it is, but not today. Let's all live as if death is just around the corner, but the corner might be far away, or if it is close, let's hope there is some kind of mirage that makes it appear farther, so that you can enjoy your dinner and your conversations with your friends and you can pour yourself a drink of the really good stuff, and share it with your lover in bed, let's live like it's all a big absurdity and all you can do is your best.

When Gabe and I got married, we danced to a morose Johnny Cash song about dying in a stone field. That was our first dance, people. We walked down the aisle, hand in hand, together, to an orchestral version of the Buffy the Vampire Slayer theme song. There was a car accident in the parking lot at the reception. Some close relatives chose not to attend. Our car got broken into the day before right in front of our new house. And we printed out the following poem on nice stationery, wrapped it in ribbon, inscribed it with "Thank you for sharing in the joy of our marriage celebration. Love, Katy and Gabe, October 16, 2004" and gave it to each guest as the wedding favor.

It's national cancer survivor day. Time to eat the peach.

From Blossoms
By Li-Young Lee

From blossoms comes
this brown paper bag of peaches
we bought from the boy
at the bend in the road where we turned toward
signs painted Peaches.

From laden boughs, from hands,
from sweet fellowship in the bins,
comes nectar at the roadside, succulent
peaches we devour, dusty skin and all,
comes the familiar dust of summer, dust we eat.

O, to take what we love inside,
to carry within us an orchard, to eat
not only the skin, but the shade,
not only the sugar, but the days, to hold
the fruit in our hands, adore it, then bite into
the round jubilance of peach.

There are days we live
as if death were nowhere
in the background; from joy
to joy to joy, from wing to wing,
from blossom to blossom to
impossible blossom, to sweet impossible blossom.