Tuesday, April 26, 2011

What's In A Name

Orginally Published - Thursday, April 21, 2011


Knockers.  The Girls.  Cupcakes.  Muffins.  Tits.  Titties.  Melons.  Rack.  Bags.  Milk pails.  Tatas. Boobs.  Boobies.  Jugs.
Do these words tell you anything about the reality of breast cancer?  Me either.
Nor do they tell you anything about women.  What they do tell you about is how our culture labels women.  At best, what they tell me is that humans are fond of jokes, slang and euphemisms, and at worst, that humans are also prone to slurs, innuendo and objectification when they are afraid or hateful or ignorant.  No doubt about it — our culture does seem to be obsessed with breasts.  And it uses breasts as a kind of shorthand to identify us — as female perhaps, sexual certainly, sex objects frequently, but not as whole human beings.  It’s hard to sum up a human being in trite slang.  Human beings are a lot more complicated.  Human beings are mortal. Human beings get cancer, and, all too often, die from it.

Bummer, huh?

Killer Tits
So, if you’re a woman, and you get cancer in your breasts, and you have a choice between keeping them intact and dying, or losing them and living, what do you think you’d do?  Yeah, I thought so.
You can get reconstructed breast-shaped tissue where your original breasts used to be.  You can get implants inserted under your chest muscles to take their place.  You can live without part of them, or without one of them, or even without both of them, and you can choose to use prostheses to fill up the empty space in your bras, bathing suits and camisoles.  Or not.  Thankfully, we do have a choice in that.  Thankfully, these choices can help us feel normal again.  But these choices are driven by wanting to live — without cancer.  Because cancer can kill you.  Living without your original breasts is not easy.  Having them amputated or mutilated by surgery is not fun or cute or simple or painless.  But it can keep you alive.

Racks & Muffins
So, when did breast cancer awareness become more focused on our breasts than on cancer?  Is it just another reflection of our culture?  Is it because our culture is so obsessed with breasts that it slides right past the C word?  Has the cancer part of breast cancer become a secondary concern?  There’s no question that it’s much more pleasant to be aware of breasts than of cancer.  Maybe that’s why so many awareness campaigns seem to revolve around saving our breasts.  But is that really the point?  What’s the point of saving our tatas if we don’t save our lives? Do we really need more awareness of our breasts? Don’t we have perhaps way too much awareness of them already, in our magazines, on our billboards, in our TV and internet ads, in our music videos, and among countless other representations in everyday life? Breast cancer may start in our breasts, but ultimately it’s all about cancer.  It’s certainly not about being a pop star or a centerfold.

Broken Jugs?
Maybe what we need is more semantic accuracy.  As much as I hate medical terminology at times, maybe if we used it, we would do a better job of raising genuine awareness.  After all, there is no one kind of cancer that can be encompassed by the phrase ‘breast cancer.’  Maybe we need to call a spade a shovel, as my mother used to say.  After all, we have lots of terminology to choose from. There’s ductal carcinoma in situ, invasive ductal carcinoma, invasive lobular carcinoma, inflammatory breast cancer, and metastatic breast cancer, among others.  Maybe if we insisted on using all these names, it would make the cancer part of breast cancer harder to gloss over and ignore.  It might be harder to fit any of them on a pink bracelet, but it would also make it harder for fundraising groups to forget what we’re really talking about.

Knock, knock…

The problem is, it’s hard to tell sometimes what awareness groups are trying to make people aware of. All those euphemisms, all that coy, cutesy stuff, all the endless pink merchandising, is it making people aware or rendering them unconscious?

Shortly after I was diagnosed, dozens of well-meaning friends began to buy me pink things and invite me to endless fundraisers and events.  Four days after I finished radiation, in October of 2008, a couple of work friends invited me to a special Providence Waterfire celebration called Flames of Hope, organized by the Gloria Gemma Breast Cancer Research Foundation, a local organization that provides a lot of practical help.  When the day arrived, I had to decline the invitation and stay home.  My armpit had blown up a few days before — a common occurrence after radiation — and my breast and armpit were so red and sore that all I could do was lie on my back, naked from the waist up, gently slathering Silvadene on my crispy skin, and laying a soft, cool, flannel-covered gel pack over the entire area.  And taking ibuprofen.  And occasionally whimpering.  I remember calling one of those friends to let her know.  I’ll never know exactly what she was thinking, but I do remember that moment of stunned silence when I told her why I couldn’t go, followed by an awkward expression of disappointment.  She didn’t ask if there was anything she could do for me, or offer to come by and perhaps bring me dinner, or even offer to work some of the hours I was supposed to put in the following day.  Instead, my work friends trotted off without me, to enjoy a balmy autumn evening of breast cancer awareness.  Later, they gave me a pink lanyard for my work ID badge that they’d found at the event.


It’s not that I’m a dull, boring person.  It’s not like I don’t know how to have fun, or that I don’t have a sense of humor.  And I happen to like cupcakes.  Very much, in fact.  It’s just that one of my cupcakes threatened to kill me.  And you can’t really wear substitute cupcakes inside your clothes.  But because I’m more than the sum of my cupcakes, I was able to sacrifice one of them and keep on living.  And the rest of me, I’m happy to say, is still very much intact.

Just wanted to acknowledge Nancy Creative, from whom I Photoshopped an Easter cupcake image.

I Don't Heart Blogger

I am going to try, once again, to actually post the entirety of my WordPress blog posts over here on Blogger, too.   Mind you, I hate Blogger code.  Hate.  It.  With.  A.  Passion.   It is cumbersome, byzantine, and idiotic.  But I'm going to do it.   Just to help double my blog's exposure.  God help me.   I managed to post "Math Lessons -- The Human Cost of Cancer" below, and "What's In A Name" above, fighting with Blogger code all the way.  But I did it.

Now, I'm going to make myself a cup of tea...

Math Lessons -- The Human Cost of Cancer

I was thinking about the veritable explosion of breast cancer awareness and fundraising groups in the last several years.  If you didn’t know any better, you might think it was the only kind of cancer out there anymore.  Or you might think it had the highest rate of incidence in the population or the highest number of deaths or the highest rate of mortality.  And you’d be wrong.

In the U.S., breast cancer does occur more often in women than any other kind of cancer, but the kind that kills more women than any other is lung cancer.  In fact, lung cancer still kills more Americans than any other kind of cancer, with an estimated 157,300 deaths in 2010 alone, according to the National Cancer Institute.  Pretty deadly.  And yet, in terms of sheer mortality, or the chance that a given kind of cancer will kill you, pancreatic cancer tops the field with a hideous 85% mortality rate last year, according to the NCI.   Should more money go to the types of cancer that kill the most people or the types that are most likely to kill you?

I decided to perform a little experiment.  I Googled different types of cancer-specific organizations in the U.S. and noted the number of hits.  Lung cancer organizations in the U.S. did produce the most hits, at 9,230,000.   Next came breast cancer orgs, at 9 million, followed by prostate at 8,170,000, and leukemia at 5,290,000.  Melanoma orgs followed at just over 2 million, and pancreatic cancer at just under 2 million.  Colon cancer was a close runner-up at 1,770,000, trailed by kidney cancer orgs at 1,230,000, bladder at 1,210,000, and lagging behind were thyroid cancer orgs at 737,000, non-Hodgkins lymphoma at 437,000, and endometrial/uterine cancer at just 339,000 hits.
Why did I pick these forms of cancer?  Again, according to the NCI, these represent the twelve most common forms of cancer in the U.S. in 2010.  The list includes cancers that occurred in at least 40,000 new patients last year.  I decided to tweak the data and produced the following table as a PDF.

How do fundraisers and researchers and legislators and awareness groups decide which types of cancer to focus on?  And how can you tell if they’re delivering what they promise?  Charity Watchdog.org, the site for the American Institute of Philanthropy, provides a list of their top-rated charities, which are those that they graded A through B+ according to their criteria.  ”Groups included on the Top-Rated list generally spend 75% or more of their budgets on programs, spend $25 or less to raise $100 in public support, do not hold excessive assets in reserve, and receive “open-book” status for disclosure of basic financial information and documents to AIP.”  If you scroll down the page, you’ll find that only twelve of the thousands of cancer charities in the U.S. make the grade.  According to their August 2007 article, called “Cancer Charities Need Dose of Organizational Chemotherapy”, the process that drives the formation of philanthropic groups appears to be influenced more by culture than math.  Duplication abounds, and marketing appeal holds more sway than need.

“Two-thirds as many women died of colorectal cancer as those that died of breast cancer in 2003. Yet based on a search of Guidestar’s database of charity tax forms, 1,326 charities mention being involved with breast cancer and only 56 charities mention work in colon cancer and 11 in rectal cancer. Why are there only 5% as many groups addressing colorectal cancer as breast cancer victims? A likely reason is that colorectal cancer, also called bowel cancer, is not as attractive from a fundraising or marketing perspective…”
Even statistics compiled by reliable sources can differ.  The Centers for Disease Control maintain an online calculator which generates totals for cancer incidence and mortality in the U.S. by gender, type and race, up to 2007, the most recent year included in their database.  Here are some tables I generated there, which show the rates of cancer per 100,000 persons:

A few things to note: endometrial & uterine cancer is called “corpus & uterus” on these tables.  You may also notice that leukemia, pancreatic cancer and thyroid cancer are not listed at all, as they are on the NCI table, but ovarian cancer is.   These next tables break down cancer incidence by sex:

And these are just the most prevalent cancers.  There are approximately thirty difference organs and systems listed in the NCI database in which cancer can occur, and hundreds of different types.   What if you are diagnosed with one of the less common forms of cancer, like brain cancer or multiple myeloma or testicular cancer?  If you end up getting some rare form of cancer, are you more likely to die?  Incidence, as we can see above, is not necessarily proportional to mortality.  On the other hand, if you are in need of education and support, do you have to have a more “popular” type of cancer to get the help you need?  If your cancer is not “common,” will you be able to get accurately diagnosed in time to get effective treatment?

Whatever you make of all this data, it certainly puts a different face on the relative merits of ribbon colors, glib marketing phrases, and awareness campaigns.  The prevalence of all the diseases known as cancer seems to defy them all.

Cancer, the equal opportunity rainbow.