Again, a flurry of recent news stories. I was particularly interested in this piece on Slate.com, which tackles the issue of "socialized medicine" and effective cancer treatment. It's interesting that this coincides with the American Cancer Society's activism drive to increase access to cancer treatment. The ACS wants more people to be treated, and to eliminate insurance problems as an obstacle to treatment. One obvious way to do that is to extend healthcare coverage through universal coverage options. Of course, that stirs panic among both right-wing and small-government types, and among ordinary people who might rather face the devil they know.
I could easily be among the latter. I am one of the incredibly lucky people who, when struck by cancer, had a fantastic health plan. I work at a university with a cancer research and treatment center, so I had access to physicians who were highly expert and used the most up-to-date treatments and resources. My university has a self-insurance plan with 90-10 coverage, a low deductible, and a low out-of-pocket annual cap. (I have thanked my 2005 self over and over for deciding to pay the higher monthly premium for this plan, rather than choosing the cheaper HMO.)
It's easy to imagine that a universal-coverage plan could limit my choice of physicians. Or perhaps it would limit what they could do to treat me--for example, maybe all medical care would be restricted to HMO levels. For someone who's had fewer limitations, like me, that is scary. On the other hand, I don't believe we have to fear such extreme restriction. And even if some restriction occurred, it seems only just for the few of us who now enjoy wildly disproportionate benefits to accept a mild adjustment downward so that our millions of disadvantaged neighbors can finally get some basic care.
And that's where the Slate article is especially reassuring. Looking at all nations with some form of socialized medicine, other than England--which is apparently abysmal for cancer treatment and survival--outcomes are far better there than here. Which tells me that, for all my choice and luck, I could be doing even better yet.
A couple of other links:
I took Taxol. My tumor was ER negative. Sucks for me.
Death rates are dropping. Hooray!
Showing posts with label Breast cancer. Show all posts
Showing posts with label Breast cancer. Show all posts
Monday, October 15, 2007
Saturday, October 06, 2007
Are you aware?
Yes--we think about Black people in February, and women in March. Now it's October, and if you're not seeing black and orange, you must be seeing pink. It's Breast Cancer Awareness Month. All together now...
Yay.
I've started to become one of those girls who aren't playing nice. The pink, the fluff, the incessant marketing machine... It feels a lot like the post-9/11, "Be patriotic! Go shopping!!"
There are some good reasons for a cancer to have a month--better than for large racial categories. Women over 40 should get an annual mammogram, and maybe seeing ads for pink toasters and pink toolbelts at this time of year can help them remember.
I also think there is some legitimate merit to giving people a way to do something about this disease. Getting breast cancer makes you feel helpless. I am certain that watching someone get breast cancer also makes you feel helpless. When I inventory my own personal relationships, I think of my husband, who had to go through 8 months of treatment and all the fear and anxiety, with nothing that he could really do to change my outcome. My parents, my friends... I am also a spooky exemplar of how many women are getting breast cancer, and how little we can do to predict or stop it. I'm a magnet for everyone else's breast cancer experiences, especially guys whose moms get it--I have heard from more than I can count on a hand, in the last year.
I know that people close to me want to change my outcomes, and I know they want me to understand how urgently they care. So what can they do? They can shop, and they can participate in big group activities like runs--the latter are even better, because they require personal pain and sacrifice. (By the way, one of posts referenced above links to a great Onion article, 6000 Runners Fail to Discover Cure for Breast Cancer.) After 9/11, I wanted to give blood, because--literally, and don't laugh too hard at my hokiness--I felt a desire to bleed for the sake of all the other people who had shed blood. A common fate kind of thing.
Yes, there are better things to do. Giving money directly to research and advocacy groups, volunteering at a cancer treatment center or a wellness community, regularly contacting members of Congress to lobby for better cancer funding (and healthcare, maybe?!)...all of these may be more powerful. They're also harder to do, and now that I'm back to my busy life, I know that it's a lot easier to do a few website clicks between meetings than to keep track of bills in the Senate.
[Along these lines, I got the following email a few days ago--it seems to offer the way to do something real, very quickly, and very easily. So of course I was suspicious!
That is good news, and not even hard to do.]
Anyway, I started by objecting to the month, and here I've really defended it. It's harder to express my objections, but I'll try. A Month is reductive. The pink onslaught is infantilizing and trivializing. There is a tyranny to breast cancer culture that allows only a narrow range of expressions, emotional responses, and actions. (I'll never forget my first--non-Wellness Community--support group experience, in which new women like me were told not to think things we said, not to feel what we expressed, and more than anything, that praying was the only thing to do. I never went back.) I don't want to be either a pink-wearing blubberer, or a pink-wearing "survivor" in the mold of The Movement. Basically, I guess it's that breast cancer, though widespread, is still a really personal and individual experience--no two women I know have had exactly the same treatment--and I don't like feeling my personal experience forced into the dehumanizing context of the mob.
And finally--an annual reminder to get a mammogram didn't do a damn thing for me. I was too young to be getting mammograms. This week, I was on a conference call with three other fantastic bloggers (their blogs are now linked, at right) who were also all too young for mammograms when they were diagnosed. And I guess that's another reason I dislike The Movement--it's focused so much on women who are older, with different concerns and different worldviews. Perhaps Breast Cancer Awareness Month should be urging younger women to get their breasts groped--by themselves, by others (hello, Noah!), whatever it takes--get some hands on those boobies and check for things that shouldn't be there!
One last note for today. Today is the one-year anniversary of my completion of cancer treatment. I had my last radiation treatment last year, I got my survival certificate from Noah, and I walked out of the center and into my "new reality" as someone cured, post-cancer, and on the way to being healthier than ever.
My oncologist told me it can take a year for some side effects to ease. My hair is still only a few inches long; my feet have only recently stopped having pain and burning from the Taxol; my right armpit and lat are still a little numb from surgery. But overall, I am healthier and in better shape than I've been in years. My life, knock wood, is back "on track"--as a relatively young woman (and junior professor), there is a climb and a progression that characterizes the life path, and I'm no longer sitting on the bench watching other people hike by.
A year past cancer treatment. I gotta say, it still seems like yesterday.
Yay.
I've started to become one of those girls who aren't playing nice. The pink, the fluff, the incessant marketing machine... It feels a lot like the post-9/11, "Be patriotic! Go shopping!!"
There are some good reasons for a cancer to have a month--better than for large racial categories. Women over 40 should get an annual mammogram, and maybe seeing ads for pink toasters and pink toolbelts at this time of year can help them remember.
I also think there is some legitimate merit to giving people a way to do something about this disease. Getting breast cancer makes you feel helpless. I am certain that watching someone get breast cancer also makes you feel helpless. When I inventory my own personal relationships, I think of my husband, who had to go through 8 months of treatment and all the fear and anxiety, with nothing that he could really do to change my outcome. My parents, my friends... I am also a spooky exemplar of how many women are getting breast cancer, and how little we can do to predict or stop it. I'm a magnet for everyone else's breast cancer experiences, especially guys whose moms get it--I have heard from more than I can count on a hand, in the last year.
I know that people close to me want to change my outcomes, and I know they want me to understand how urgently they care. So what can they do? They can shop, and they can participate in big group activities like runs--the latter are even better, because they require personal pain and sacrifice. (By the way, one of posts referenced above links to a great Onion article, 6000 Runners Fail to Discover Cure for Breast Cancer.) After 9/11, I wanted to give blood, because--literally, and don't laugh too hard at my hokiness--I felt a desire to bleed for the sake of all the other people who had shed blood. A common fate kind of thing.
Yes, there are better things to do. Giving money directly to research and advocacy groups, volunteering at a cancer treatment center or a wellness community, regularly contacting members of Congress to lobby for better cancer funding (and healthcare, maybe?!)...all of these may be more powerful. They're also harder to do, and now that I'm back to my busy life, I know that it's a lot easier to do a few website clicks between meetings than to keep track of bills in the Senate.
[Along these lines, I got the following email a few days ago--it seems to offer the way to do something real, very quickly, and very easily. So of course I was suspicious!
So I searched for this pitch on urban legends sites, and about.com had the following:
> Please tell ten friends to tell ten today! The Breast Cancer site is
> having trouble getting enough people to click on their site daily to
> meet their quota of donating at least one free mammogram a day to an
> underprivileged woman. It takes less than a minute to go to their site
> and click on 'donating a mammogram' for free (pink window in the
> middle).
>
> This doesn't cost you a thing. Their corporate sponsors /advertisers
> use the number of daily visits to donate mammogram in exchange for
> advertising.
>
> Here's the web site! Pass it along to people you know.
>
> http://www.thebreastcancersite.com/
Except for the part where it says "The Breast Cancer Site is having trouble getting enough people to click on it daily," this dated email flier (circulating since 2001) remains basically true. In 2002 alone, the highly successful site and its advertisers funded a total of 1,624 free mammograms for underprivileged women, thanks to the daily clicks of visitors. The Breast Cancer Site has been reviewed by health advocacy groups and various media outlets and recommended by sources like Ms. Magazine. It is well worth a daily visit.
That is good news, and not even hard to do.]
Anyway, I started by objecting to the month, and here I've really defended it. It's harder to express my objections, but I'll try. A Month is reductive. The pink onslaught is infantilizing and trivializing. There is a tyranny to breast cancer culture that allows only a narrow range of expressions, emotional responses, and actions. (I'll never forget my first--non-Wellness Community--support group experience, in which new women like me were told not to think things we said, not to feel what we expressed, and more than anything, that praying was the only thing to do. I never went back.) I don't want to be either a pink-wearing blubberer, or a pink-wearing "survivor" in the mold of The Movement. Basically, I guess it's that breast cancer, though widespread, is still a really personal and individual experience--no two women I know have had exactly the same treatment--and I don't like feeling my personal experience forced into the dehumanizing context of the mob.
And finally--an annual reminder to get a mammogram didn't do a damn thing for me. I was too young to be getting mammograms. This week, I was on a conference call with three other fantastic bloggers (their blogs are now linked, at right) who were also all too young for mammograms when they were diagnosed. And I guess that's another reason I dislike The Movement--it's focused so much on women who are older, with different concerns and different worldviews. Perhaps Breast Cancer Awareness Month should be urging younger women to get their breasts groped--by themselves, by others (hello, Noah!), whatever it takes--get some hands on those boobies and check for things that shouldn't be there!
One last note for today. Today is the one-year anniversary of my completion of cancer treatment. I had my last radiation treatment last year, I got my survival certificate from Noah, and I walked out of the center and into my "new reality" as someone cured, post-cancer, and on the way to being healthier than ever.
My oncologist told me it can take a year for some side effects to ease. My hair is still only a few inches long; my feet have only recently stopped having pain and burning from the Taxol; my right armpit and lat are still a little numb from surgery. But overall, I am healthier and in better shape than I've been in years. My life, knock wood, is back "on track"--as a relatively young woman (and junior professor), there is a climb and a progression that characterizes the life path, and I'm no longer sitting on the bench watching other people hike by.
A year past cancer treatment. I gotta say, it still seems like yesterday.
Sunday, September 30, 2007
Cancer has me
Two in one day. I know!!
Got a phone message today saying that my aunt, who has multiple myeloma, is in the hospital. Things have been looking worse for her lately. She's survived almost 13 years so far with this disease, but it's nasty. Much worse than breast cancer (not a "good" one, for sure). I don't have details, but this is her second hospital stay in the last several weeks, and I know her current chemo has been extremely tough. So I'm feeling some concern, and it makes me reflective.
So...I guess this is kind of for her...
[ ]
Cancer has me
by one ear, like
a truculent child,
and marches me
to the window.
"Hand it over then."
All of it, turns out.
The collector, fat-faced,
flat-mouthed
Brushes each thing with listless fingers
as I thud it
protesting
on the counter
Lean brown arms and legs
(The muscles wither,
lying there--)
Breath, gassy and bright.
Clarity of thought,
a smooth skein--
the collector scuds a thumb
in the middle, leaves
a tangled heap.
A row of tomorrows,
lined neatly like dice.
The collector sneezes, and
they tumble
one into the next
and lie still.
Hardest of all, that rounded thought,
opaque with certainty,
solid as eggshell
surrounding me,
that I am safe
and blessed.
At the end, I stand
not naked
but stripped
Some things they let me keep.
I hold them
piled like smelly clothes
as Cancer shoves me onward,
a boot to my back:
Fear. Pain.
Regret.
Long hours
in which to know this all.
The door behind me,
with a clang...
It’s not a cell, but
Vast white, limitless
Nothing
I can’t see where
to put my foot.
But my arms open
and let fall what I held
so my fingers can pull
from under my tongue
a talisman,
smuggled,
now in my fist.
Cancer is on this side
of the door--with me--
But quiet now,
unseen;
I won’t hear a breath
Until one day
That boot crushes my neck.
Right now, though--
this moment--
Warmth starts in my hand,
hard with victory.
I close my eyes.
I melt into whiteness.
Got a phone message today saying that my aunt, who has multiple myeloma, is in the hospital. Things have been looking worse for her lately. She's survived almost 13 years so far with this disease, but it's nasty. Much worse than breast cancer (not a "good" one, for sure). I don't have details, but this is her second hospital stay in the last several weeks, and I know her current chemo has been extremely tough. So I'm feeling some concern, and it makes me reflective.
So...I guess this is kind of for her...
[ ]
Cancer has me
by one ear, like
a truculent child,
and marches me
to the window.
"Hand it over then."
All of it, turns out.
The collector, fat-faced,
flat-mouthed
Brushes each thing with listless fingers
as I thud it
protesting
on the counter
Lean brown arms and legs
(The muscles wither,
lying there--)
Breath, gassy and bright.
Clarity of thought,
a smooth skein--
the collector scuds a thumb
in the middle, leaves
a tangled heap.
A row of tomorrows,
lined neatly like dice.
The collector sneezes, and
they tumble
one into the next
and lie still.
Hardest of all, that rounded thought,
opaque with certainty,
solid as eggshell
surrounding me,
that I am safe
and blessed.
At the end, I stand
not naked
but stripped
Some things they let me keep.
I hold them
piled like smelly clothes
as Cancer shoves me onward,
a boot to my back:
Fear. Pain.
Regret.
Long hours
in which to know this all.
The door behind me,
with a clang...
It’s not a cell, but
Vast white, limitless
Nothing
I can’t see where
to put my foot.
But my arms open
and let fall what I held
so my fingers can pull
from under my tongue
a talisman,
smuggled,
now in my fist.
Cancer is on this side
of the door--with me--
But quiet now,
unseen;
I won’t hear a breath
Until one day
That boot crushes my neck.
Right now, though--
this moment--
Warmth starts in my hand,
hard with victory.
I close my eyes.
I melt into whiteness.
Don't worry, I don't drink much
If you missed this news this week, you probably also haven't heard that OJ's back in the justice system or that Iran's president didn't quite get to "make it" in New York.
Basically, a new study apparently shows that women who drink alcohol regularly--even as little as a drink a day, and regardless of what kind of alcohol it is--face an average increase in risk of breast cancer of 30%. Now, as a Wired blogger helpfully points out,
Thirty percent is a big deal: Reuters points out that women have, on average, a 1 in 8 lifetime chance of developing breast cancer, so a 30 percent change ups that chance to 1 in 6.(By the way, don't miss the photo accompanying that article. Someone has quite the gift for appropriate illustration.) Anyhoo, while the risk is substantial, I've been scouring the various articles for more detail on methodology, and I can't find it. So my personal jury is still out on this one (and thank goodness; I needed some quiet inside my head).
The articles that get into a possible mechanism for the finding generally say that alcohol is hypothesized to disrupt hormones, and this leads to the kind of estrogen imbalance that causes breast cancer. Well, my tumor was not fed by estrogen (or progesterone). But none of the articles mention whether the risk was equivalent across tumor types, although the only proposed mechanism is hormonal. That is frustrating.
The study on which my nutrition program is based, for example, showed no major benefit for women who DID have ER-positive tumors, but a big benefit for ER-negatives like me. It's clear from virtually all breast cancer studies that the tumor type is one of the biggest "it depends" factors out there. So it would really be nice if the press had covered this aspect. Even the medical press has not. We'll see what happens when the study gets published; hopefully we'll find out then.
In other news, I am very happy to see this next article. Basically, it tells me that I can forget about needing to buy sexy lingerie or plan romantic weekends: I got breast cancer, and that's a marriage boost in itself. Yay! (Noah's thrilled too!)
And finally, looks like those newsmakers in Barcelona aren't done yet (or, those who weren't invited decided to prove they still matter, too). Anyway, today's LA Times will report that childhood exposure to DDT has been shown to increase later risk of breast cancer by a whopping 400% (though the sample size is admittedly small). Since DDT was outlawed before I was born, it may not have affected me. But it is yet another reminder of how many scary chemicals we swim around in, and how much predestination is involved in whether each of us gets hit by something terrible.
Tuesday, September 25, 2007
Survivorship Plan
Boy, the articles just keep coming.
Noah sent me this bit from Yahoo! News about survivorship plans, a new trend (like fab shades!) in cancer care. My own oncologist did not give me a written plan, but I am clear on many things:
What I don't have is a very specific list of symptoms to watch out for. I have a mixed opinion of that piece of advice. The power of suggestibility surely has to be weighed against the benefits of knowing what to look for. If I knew that a persistent pain in the 3rd rib from center was a warning sign of metastasis, I'd be rubbing that 3rd rib constantly to assess it, and pretty soon it would indeed hurt like hell! So perhaps being in the dark a bit is good for me here.
Overall, though, it seems to me that better knowledge and awareness are being emphasized, and that is terrific. Also, the medical community is awakening to the fact that cancer treatment is emotionally and cognitively overwhelming, and realizing that we'll all have better outcomes if physicians take on just a tiny bit more of the burden of managing information (not just drugs and procedures). Based on the confusion I saw even in intelligent, thoughtful members of my own support group, this will surely help!
Noah sent me this bit from Yahoo! News about survivorship plans, a new trend (like fab shades!) in cancer care. My own oncologist did not give me a written plan, but I am clear on many things:
- For the next year (like the last), I'll have checks every 3 months. This includes blood testing, to look for chemical markers of breast cancer recurrence, and physical exams.
- Once a year, I have a mammogram. If anything funky is found then or at any other time, I may also have an MRI.
- If I were to notice any difficulty breathing or other heart-related symptoms, I expect I would have an echocardiogram, since I had some of the chemo drugs that can cause heart failure. But there is no special monitoring of that because I've seemed heart-healthy.
- After the next year, my exams will go to 4- to 6- month intervals for up to the 5-year mark. After that, they may revert to annual checks.
- I have my nutrition plan with my nutritional oncologist, ongoing.
- I have copies of all my records, including pathology reports and treatment records.
What I don't have is a very specific list of symptoms to watch out for. I have a mixed opinion of that piece of advice. The power of suggestibility surely has to be weighed against the benefits of knowing what to look for. If I knew that a persistent pain in the 3rd rib from center was a warning sign of metastasis, I'd be rubbing that 3rd rib constantly to assess it, and pretty soon it would indeed hurt like hell! So perhaps being in the dark a bit is good for me here.
Overall, though, it seems to me that better knowledge and awareness are being emphasized, and that is terrific. Also, the medical community is awakening to the fact that cancer treatment is emotionally and cognitively overwhelming, and realizing that we'll all have better outcomes if physicians take on just a tiny bit more of the burden of managing information (not just drugs and procedures). Based on the confusion I saw even in intelligent, thoughtful members of my own support group, this will surely help!
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