all hallows health update

hey it's a treatment news post! Unbelievable. Here's the update-- I feel terrible.

First I didn't know why I felt so bad, then it got really really bad, then we figured out it was my meds and I went off them, and now it's been a week and I still feel terrible and my doctor told me today that it could take 6-8 weeks to be normal again. Boooo and not in the fun halloween way!

As part of the standard treatment protocol for hormone positive breast cancer, after chemo and surgery one does five years (the period of time it takes to move from being "in remission" to "cured," meaningless though that distinction really is) of hormonal treatment (either an AI class drug or Tamoxifen.) I was initially put on an AI and didn't tolerate it. Then we put me on a different one and I didn't tolerate that, then we tested me for Tamox and discovered that I can't metabolize it so it would be useless, so then I got put on Evista which is a less effective Tamoxifen-like drug and I was doing so well! Until I wasn't anymore. And now there are no more drugs to put me on so that's that.

I don't like it. I won't miss the side effects, but it's stressful to be on nothing. I don't really think the cancer's going to come back, even without the drugs (and you all will be happy to hear that my doctor doesn't think so even more than me), but what if it does? It just feels so worrisome not to be able to do all the things that can help prevent recurrence. I know what you all are thinking-- but you're doing so many other things, the diet and exercise and everything-- and it's true. I do. And that's a big part of why I think I'll probably be okay. But I do that stuff because I'm scared to not do it, because I feel like I have to or I'll die and being on the pills gave me a tiny buffer at least. Like, it's okay if I don't make it to the gym today or if I eat a tiny bit of something with sugar in it every once in a while. And I want that. I don't like how much anxiety I feel around ordinary things, I don't think it's good! So. Not pleased.

You know what else I'm not pleased about? How terrible I feel. And how boring it is to feel so crappy. But let's end on a more positive note-- you know what I am pleased about? Dressing up! So in closing, here are pictures of me as Adam Ant. As you can see, I have hair and generally look and am pretty normal again! Even if I do feel lousy at the moment.

[a question-- do you actually see these updates, friends who want to know what is happening? I feel like maybe not; so let me know, if you are getting this? Okay. Love to all and goodnight.]

And they say fundraising for BC is becoming gauche and over the top! I can't understand it...

health update

Still in remission! Yay!

bi-annual update-- a movie review!

Pink Ribbons, Inc is the first major work that I know of to directly take on the big business of American Breast Cancer “support”, and as such is long overdue.

Way back in the bad old days (which continued right up through the 1970s) breast cancer was a shameful secret, even more taboo than other cancers, but that hasn't been true for a long time now. Instead, the idea of breast cancer as an epidemic that can strike anyone—not only the unclean, careless, or gender non-conformists—has been mostly accepted, and its “survivors” have come to be celebrated and idealized as “warriors” and “heroines” rather than hiding their medical histories and dealing with the after-effects of treatment alone.

This is a change that began in the activist community—with women who were themselves affected, who saw the lack of research and awareness and prevention, and took action to make a change. The first breast cancer activism was tied directly to the feminist movements of the 1970s, and successfully changed the standard treatment of the day—disfiguring radical mastectomies which were performed unnecessarily and often left the patients disabled. High profile activists such as the Boston Women's Health Collective pushed for self-exam knowledge, and scores of other groups and individuals took action to draw attention to the links between environmental devastation and the toll on women's bodies. While the gender determinism contained in metaphors likening the bodies of women to the earth is problematic, the metaphor remains powerful and moving. As our earth is poisoned, just so are our bodies. The Alchemist principles of likeness—as above, so below; as we treat our home, so we also fare—are resonant in the devastating epidemic we now face.

But as all this work succeeded in drawing mainstream attention to the cause, things changed. The Susan G Komen foundation moved to the forefront of the fight, soon joined by the Estee Lauder cosmetics company, and the message quickly changed from prevention to “awareness.” Over the years, breast cancer awareness has become a multi-million dollar business, assuring profit for any company willing to slap the iconic ribbon on their packaging and claim to be “working for the cure.” Since the early 1990s, billions of dollars have been raised and hundreds, if not thousands, of studies and foundations have been funded. So surely with all these survivors around, it's a that sign things are improving, right?

Wrong. The increase of survivors has one single tragic source—an increase in breast cancer cases. Today, one in eight American women will be diagnosed with invasive breast cancer. Fifteen years ago the number was one in ten; thirty years ago closer to one in twelve. In the 1950s it was less than one in thirty. Of these women, one in three will die of the cancer. Despite all the advances in medications and treatments and screening, this number is nearly unchanged over the last forty years, except in communities of color, where the mortality rate is climbing.

So where is all the money going, and what is it doing? Enter Pink Ribbons, Inc, a much needed exposé of the business of breast cancer awareness. The documentary filmmakers trace the history of the pink ribbon and the organizations that use it, as well as the history of breast cancer itself and its treatments. But the heart of the movie is interviews with women who are on the front lines of the fight against the disease as doctors, activists and patients. The amazing Barbara Brenner of Breast Cancer Action says everything I never even knew I wanted to, brilliantly, and too many other women to name bring their varying perspectives to bear on the state of breast cancer today. I can't recap it; instead I beg anyone with the slightest interest in activism, breast cancer, feminism or just keeping up with current events, to go see this movie.

However, no movie is perfect. I had some issues with this film. A movie of this kind is, naturally, not made from a place of disinterested objectivity. Emotions are sure to run high; and so they do. The filmmakers have some strong feelings on the business of pink ribbons, and while I don't blame them, I have some issues with how they express it. I agree that the companies and people who profit from this disease are cynical parasites who are undeserving of respect. And one of the main ways profits are made is through organizing events, such as walks and runs and pretty much anything you can imagine “for the cure.” But that doesn't mean these events are useless or the people who participate are foolish patsies! I get that if you spend years researching these events and where the money goes and to whom, you might get pretty bitter about it, and I think it's terrible that people join up because they want to help, to do something, and instead mostly become a source of profit for rich capitalists. But, in my opinion, this is a case where meaning well really does count! It's important to draw attention to where the money goes—but it's also really important to recognize that millions of people want to help, want to change things, and they care enough to do real work to make it happen and make real sacrifices. It's not useful to tell them they've been had—we need to honor their intentions, and find ways to make that commitment count, to channel that energy towards real change.

I believe that's what the filmmakers intend for this movie to do. I saw it at a screening attended almost exclusively by survivors* and there were tables of activist resources in the lobby and so forth. But I think the execution was botched. There's a real thread of disdain throughout the film for the women who find solace and strength in these events. And this wasn't only my own feeling—the Q and A after the film showed that many of the women who had come to see the movie felt attacked and defensive. Even I, an anti-capitalist and someone who had never participated in any breast cancer events, felt defensive. I have never had any illusion that the pink ribbon on the scissors for sale at Office Max was doing anything useful for me; but during the early days of my diagnosis and treatment, seeing that stuff, even the most egregious examples, did feel a little good to me. It made me feel that what I was going through was recognized, that my suffering and fear were acknowledged and that millions of people didn't want this to be happening to me, wanted to help keep it from happening to any more women. It felt like feminism. I have at various times worn pink ribbon pins and had a magnet on my car—not to support the Komen foundation, but so other sufferers knew I cared, and as a shorthand—a way of saying, “hi there, this happened to me, also. You are not alone.” You may feel that I was buying into to something useless—but I think it had some value. Not by random chance, but because however much it may have been co-opted and diluted, the symbol of solidarity is an idea with roots in something real, with real value.

Anyway, one of the audience members at the screening said something that broke my heart as much as any of the terrible stories or statistics in the movie. She said (paraphrased), “It's terrible that these walks don't do more good financially, but that isn't the only good they do. The feeling of being part of a huge crowd marching through downtown, filling the streets, is just so great! We need that feeling in addition to doing activist work.” I wanted to cry. I have never heard a better description of the ways in which the activist community is failing. People think that activism means signing petitions and stuffing envelopes and that it's a chore; what they want is camaraderie and support and commonality, so they look elsewhere. This is a tragedy. In case I need to spell it out; it is taking action with like minded people that provides these feelings. We should not need corporations to repackage that feeling, that set of circumstances, and sell it to us. The unfortunate truth, however, is that there is a void which these corporate entities are filling. This is not the place for a detailed discussion of this, but the fact is that activism in this country has become something that isn't accessible to people who are ill, are busy, are raising kids, or who just don't want to make it another full time job. The problem is more than simple misrepresentation of what it is like to participate (though that is also a problem); it is also a reality that people are being forced to turn to watered down versions of militancy in their attempts to make the change that they can see is desperately needed. So should we condemn them for trying? No, we need to look to ourselves and ask why they turn elsewhere, what we, the activist community, are not providing that others are.

Of the women interviewed in the film, it is Barbara Ehrenreich who speaks with the most bitterness towards the status quo of breast cancer industry. It was her 2008 essay Smile or Die: the Bright Side of Cancer that inspired the filmmakers and led to the making of this movie. She wasn't the first to try to draw attention to the state of the industry, but she was the most prolific, and her piece inspired a flood of (long overdue and very useful) articles and hand-wringing about pink teddy bears and toxic products being marketed as supportive of “the cure.” While she makes mostly excellent points, not just about where the money goes but also about the infantilization of women implicit in many of the tchotchkes offered to patients, I think it's important to remember that she writes not as a journalist, though she is one, but as a breast cancer patient. Meaning, she has very strong subjective feelings and reactions, and it is bothersome to me to see these feelings presented as facts, or as universal, or as something that it would be desirable to have be universal. It's regrettable that she felt talked down to or belittled by the way the information she found was presented, by the branded products and inspirational platitudes and chipper encouragement. She has good reason for these feelings, she expresses very clearly why many women react this way (including myself, at times); but not everyone does. The reason this stuff is so pervasive is because many women find it helpful and supportive of their needs, and we need those women in this fight too. It isn't useful—or, well, nice—to alienate them. I believe it's anti-feminist to ridicule other women's choices, and I feel that this movie, and in particular Ms. Ehrenreich, does that. I don't think it's intentional, but I do think it's a failing.

That said, however, I'm more glad than I can say that this documentary is out there. I hope it is the first of many projects and campaigns to draw attention to the issue and to the hard work that has been being done for years by dedicated people around the world, and I hope it sparks a surge of energy to address the real roots causes of this terrible scourge and to find real solutions and strategies for prevention. At the very least, I want everyone I know to see it, and to tell their friends to see it, to understand more about what I'm facing and to put it in context. This movie does that, wonderfully. Please go see it. And then, when you have, let's talk about how to improve on it, how to make things better.

note--

*I'm not a huge fan of this term, but for lack of a better, equally recognizable one, I use it here

Holiday Health Update

Oh, this is so overdue! I know. I keep thinking about how I need to post an update, and then I don't. It's not because I don't want you all to know what's going on—there just isn't anything going on! Seriously. I just don't know what to say! But for you, I will figure it out.

Zometa update: I got the insurance to pay for it! Yay! Also, this year's studies came back showing it to be just as beneficial as we knew it would be, so my insistence on getting it is totally vindicated!

Um, context, right, sorry—recapping. It's a bone density drug that is also used to treat cancers which have spread to the bone (bone mets). Some preliminary studies also showed it having benefit in recurrence prevention for women with early stage breast cancer (me!). It was still being studied, but I looked at the data and read up and decided I thought it was a good idea for me (my doctor thought so too). But alas! Insurance would not pay, because it wasn't yet definitively shown to help! Woe and worry—it's very expensive! $1500 a treatment! I found some funding, and a some of you were very generous (thank you!) and I started getting the treatments. And now, I can get the treatments paid for (as it should have been all along) and we can all use our money for more fun things. Nothing like scraping and saving to have some really unpleasant poison run into your vein. Yuck.

Anyway, and then just this month more studies came back totally confirming that for people with my type of cancer it can indeed reduce recurrence by 46%, so I'm doing the right thing. Excellent.

This is good because I'm not really doing what I should be with the other drugs.

Hormonal drug treatment update: The standard of care for hormone+ early stage breast cancer (what I have), right now, is to do chemo and/or radiation and surgery followed by 5 years of anti-hormonal treatment. This is one of two types of pharmaceuticals—Aromatase Inhibitors, or Tamoxifen. AIs are currently considered the best, so that's what I was put on first. Alas, I cannot tolerate them because I am a sensitive delicate flower and my body hates drugs of any kind. I tried various different ones, but by the time I gave up I was taking one half a pill every three days and even with that tiny amount, I was having awful side effects.

So we moved onto Tamoxifen. Tamoxifen is special in that 15% of people lack an enzyme that metabolizes it, so if you're one of those people, it just does nothing at all. No point in taking it. I, friends, am one of those special people.

So, now I am taking something called Evista (Raloxifen), which is primarily (again) a bone density drug (I am really not going to have problems with osteoporosis, premature menopause notwithstanding), which is also used for recurrence prevention. It operates on the same mechanism as Tamoxifen, which is to occupy (#occupy?) the estrogen receptors so the bad estrogen can't get in there. The advantages for me of this approach (as opposed to the AIs which just wipe all the estrogen from the body) is that I don't have to suffer the side effects of not having estrogen as much, so that's nice. Though I still have a very low amount.

The disadvantages are that the reason it's not really used anymore is that it doesn't work as well as the others. And, oh yeah, I'm only on a half dose because that's all I can tolerate. So to sum up—the AIs work 15% better than the Tamoxifen. The Tamoxifen works 15% better than the Evista, and I'm only taking a half dose of the Evista. Sigh. On the bright side, though there's no way of knowing, I'm pretty sure my super sensitivity to drugs means a half dose is plenty. I'll be happy enough if I can continue to tolerate this one; it's early days yet, and after this there isn't really anything else. So fingers crossed.

About the Tamoxifen thing: If you aren't a breast cancer patient, you will never get tested for this enzyme that prevents absorption of this drug. What a shame! So interesting! Because it's not just this drug—I looked it up and there's this endless list of other things that we 15% of the population can't metabolize and I just would never have known. There are antibiotics, painkillers, all kinds of stuff on this list. Do opiate painkillers just give you a headache? Maybe it's because, like me, you are incapable of absorption! Fascinating stuff, people. Really. Definitely goes in the “we know so so little” file of medical treatments.

Anyway, that's about that for medical news. How's my life? Uneventful, and pleasant. I am feeling pretty well—so happy to be off those AIs. Ugh. I feel a lot better. I go to the gym and run, a lot, I read books, I spend too much time on the computer, I try to get outside and I cook a lot of vegetables. Seriously, it's one of my main activities. I, uh, I don't know! Things are good, that's all that matters. Hope you all are well too and Happy Holidays! XO

PS-- Am I leaving out anything interesting? Feel free to ask questions. The feedback people give me is that you would like updates, but I just don't know what to tell you... help me out here! Oh, here's one; yes I am in San Francisco. I am trying to get out of town more, but that's still not much--the majority of the time I am right here in my apartment in my city. Which is fine. So come on out and visit!

6 easy ways to not get cancer

I'm not a doctor or an expert, but this is something I've learned a lot about over the last couple of years. Before I was diagnosed, I thought I was really healthy and doing so so much good stuff to be proactive and so on...but now, looking back, I can't believe the things I did to my body, not even knowing. So yeah, I used to do all this stuff. But look where that got me! So don't be the fool I was, friends....

I haven't really bothered to source all this. Most of it is pretty uncontroversial and widely known. BPA bad, vegetables good. I threw in a couple links, but for the most part, if you think something is wrong, you can call me on it; but I'd prefer you just googled till you find the study I'm referencing cause that's what I'm gonna do if you try to say I don't know what I'm talking about. Like I said, I'm no doctor—but unless you are, or also have cancer, I can assure you that I've spent more time reading up on this stuff than you have. So take advantage of my many hours of reading and trying to find sources that didn't agree with these things, because I don't want them to be true any more than you do, and read on....

(Or you could just read this American Cancer Society page, but I already wrote this whole thing so you may as well read it. But you will notice it says a lot of the same things as me.)

Don't eat or drink out of plastic!

Especially don't store hot foods in plastic, or heat in Tupperware in the microwave, but even cold storage (like water bottles) is very bad. Most plastics contain BPA, a proven carcinogen and possibly one of the main culprits of the modern breast cancer epidemic. When I see people drinking water out of plastic bottles, I cringe and fight the urge to knock them out of their hands like a lit bomb. Can linings also are plastic, and contain BPA; acidic foods especially soak up the BPA, so if you stop buying only one thing in cans, make it tomatoes/ tomato sauce.

Canning jars and metal water bottles are totally great and easy to come by! (Though for other health reasons I would stay away from aluminum in choosing a metal container). Glass food storage containers are also becoming more and more common, though I would point out that most brands have BPA containing tops; I like to put them in the fridge till the food is cool before putting the lid on. I may be fooling myself that it makes a difference but it can't hurt.

Stop eating dairy.

Seriously. Right now. I am vegetarian, and if you really want to be as healthy as possible I personally think you should be too, but that is negotiable. It's possible to eat meat or eggs and still have a really healthy diet. But dairy is just plain terrible for you. It increases internal inflammation, which is implicated in all kinds of health problems, from chronic pain to diabetes, depression, allergies, intestinal disorders, and more; plus it compromises the health of your cells, significantly increasing the risk of cancer. Dairy is associated with numerous cancers (breast, ovarian, colon, and more), but most of all with prostate cancer (the #1 cancer affecting American men, with one in six being diagnosed at some point in their lives).

There are also great environmental benefits to veganism, and factory farming is cruel and awful. But even raw, organic, pastured, pet goat dairy is bad for you. Also, milk is not an efficient way of getting calcium or Vit D; the best way to do this with food is green vegetables.

Stay away from trans fats as much as possible.

Eating a lot of any kind of fat is bad for you, and you probably shouldn't. But especially bad are trans fats. The main source of trans fatty acids in the American diet is partially hydrogenated oils. Margarine, anything deep fried, most things fried from a restaurant, and many packaged foods (cookies, chips, pretzels, etc) are high sources of partially hydrogenated oils. Overheating good oils also causes them to become trans fats. One study showed consumption of high levels of trans fats raising the risk of breast cancer by 75%; whatever the numbers, no one out there is saying it's anything but bad for you. It's so bad that even the corporations aren't trying to whitewash it—it's just impossible. It's that bad for you.

Instead, use olive oil. And don't preheat the cooking pan. Easy and good for you. DO NOT use canola oil! See below.

Eat vegetables!

Even if you still do all of the terrible things above, you can still cut your risk of cancer by eating vegetables and fruits. A quote; “...for most cancer(s), persons with low fruit and vegetable intake (at least the lower one-fourth of the population) experience about twice the risk of cancer compared with those with high intake....” What more do you need to know?!

A link.

Vegetables are amazing. I mean, I always knew they were good for you; everyone knows that, right? But the more I learn the more I am blown away by the incredibleness of the plant world. I don't like to have such a human-centric view of the world, but it's hard not to feel like the world was put together with our best possible health in mind when you learn about how every single plant out there is somehow amazing for us, specifically, in it's own different way. Even the most boring or random seeming vegetables have amazing properties (parsley? radishes? artichokes? you betcha!) So whatever you like, eat that! Lots of it!

For those of you living somewhere cold, or who are in a hurry—frozen veggies are a great alternative. They retain a lot of the beneficial anti-oxidants. Canned, not so much, plus see above re: dangers of cans. Organic vegetables are best, but the benefits of eating veggies are greater than the risks of pesticide consumption (except in the case of GMOs! see below), so better to eat the veggies than to hold out for organic.

But....don't eat GMO plants!

Genetically modified foods are not safe. The fact that they are modified makes them unsafe, increasing risk of allergic reaction and, as studies are now showing, possibly causing organ failure; but on top of that, what they modify them for, most often, is for the plants to be able to withstand higher loads of pesticides and herbicides without dying. So a GMO vegetable, or bean, or whatever, often has as much as five times the load of carcinogenic chemicals as a normal non-organic item (or in the case of soy, even higher levels). Things that, if they aren't organic, are always going to be GMO in the US—potatoes, corn, soy, tomatoes, and canola oil (I don't know if there's such a thing as organic canola oil, but if so, stay away from that too. Canola oil is no good!). Pretty much every junk food is all GMO. Potato chips, anything with corn syrup, and commercial tomato sauce, tofu from a cheap chinese food place. If you can't stop eating junk food, at least stop bringing home GMO veggies and cooking them into your healthy meals!

And finally, exercise.

To really get the full cancer fighting benefit of being active you would need to do at least 30 minutes of heart rate increasing activity a day. If you ride your bike around somewhere flat all the time, it doesn't count. You have to actually get sweaty and out of breath. Ideally, 45-60 minutes, five days a week. But anything is better than nothing—even a little walking around is shown to be beneficial so do whatever you can! But if you can get out there and run around or go swimming or something... that's the best. Also it makes you feel really good.

~~~~~~~~~~~~~~~~~~~~~

So, I may be wrong, but I feel like I know what you're thinking. This is too much, I can't do all this stuff! What am I supposed to eat? How can I live my life? But it isn't that bad. You don't have to change everything about your life to make improvements. Just do a little. Get some glass jars and start using them instead of tupperware. Walk somewhere instead of taking the bus, Take the stairs instead of the elevator. Cook more simple meals for yourself (a whole grain—rice, whatever—a vegetable or two, and a bean of some kind—bean salad? Black beans? Lentils? Tada! It's a meal.) or just add a vegetable to whatever crappy thing you're eating. If you only do one thing, make it vegetable eating! Or exercising.

And if you already do all this and are ready for the advanced stuff, one last, unpopular, item....

Alcohol is bad for you.

I'm sorry. No one wants to hear it, and everyone just clings to the occasional study showing that wine reduces risk of heart disease or whatever. But there it is. Let me tell you about those studies the evening news is always reporting on. They do studies on, say, the cell longevity promoting properties in wine in an effort to find something they can synthesize into the new miracle drug. Anytime they do a study on a food or whatever, generally, it's a pharmaceutical company trying to find a way to make a buck. It's not about the food or wine itself, because that isn't something that can be patented so they don't care. Anyway, so they find something, and release a preliminary finding kind of thing, as a way of saying, buy our stock! We're about to find the secret to eternal youth!

But the wine itself doesn't do the things the study promises; they're speculating that an incredibly concentrated version of a chemical found in the wine would do that, under the right circumstances. To get that benefit, you would have to drink something like six or seven bottles of wine a day. Which would, of course, KILL YOU, because alcohol is bad for you! Sorry, but there you have it. Study after study has shown increased consumption of any kind of alcoholic beverage to be directly correlated with increased risk of many different kinds of cancers, especially hormone driven cancers.

If there's one thing on this page I know about, it's this. I personally read all the studies and pored over them for loopholes (a common practice in the Breast Cancer survivor world by the way—not just poring over studies for loopholes, but specifically the alcohol ones); the closest anyone has been able to come is an Australian study showing a slightly less elevated risk in people with high folate levels (obtained by eating lots of vegetables). But the truth is this; anything over three drinks a week is a huge risk factor and even that is iffy if you have a family history. I know everyone is going to do what they're going to do, and I know that what people want to do is keep right on drinking; but you deserve to know.

Sorry. I mean, I really am. I like being able to drink, a lot. It sucks. But there you have it.