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.]
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.
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
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!
