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.

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