Survivor Shines Light on Metastatic Breast Cancer

(WOMENSENEWS)–If you’re a young breast cancer survivor and on Facebook, you might not be happy with the loopy little fill-in-the-blanks word games or "memes" that annually make the rounds in the name of promoting Breast Cancer Awareness Month in October.

This year’s meme plays on the theme of pregnancy.

Women are asked to write "I’m ____ weeks" (fill in the blank with the number corresponding to your birth month) and craving ______ (a list of snacks is given; fill in the blank with the one next to your birth date). I would have been "one week and craving chocolate cake" had I chosen to play this game, which I decidedly didn’t.

Many survivors have instead chosen to post something like, "I’m three years [out from diagnosis], and I’m craving a cure for the whole damn thing."

Pregnancy can be a painful subject for those of us who’ve faced or are facing breast cancer during our childbearing years. Chemotherapy often brings on premature menopause, which may prove permanent. In any case, as my survivor friend Julie wrote in her blog, "even if it’s temporary, the years spent fighting our disease may have been the years we needed to start a family."

I’ll add that the money often needed to adopt or to pursue surrogacy is not generally plentiful in the wake of huge cancer-treatment expenses.

The odd idea of these games is to be cagey: Never mention breast cancer, but instead make everyone who sees your Facebook status wonder what it’s all about.

I have seen three memes so far, one leading up to each of the Octobers during which I’ve had a Facebook account. It’s impossible to figure out where these things come from. Hell?

A ‘Coy Secret’

"Don’t tell the guys," the memes say for some reason–as if the stated purpose of raising breast cancer awareness should be a coy secret.

I’ve never joined in these games, and neither have the vast majority of my friends who, like me, are young survivors of this disease. Some who do join, fill in the blanks with a bluntness not recommended by the saccharine-jokey memes.

Last year’s game was about where you "like it," meaning where you like your purse: "I like it on the floor/kitchen table/wherever I can find it," etc. My friend Kim blew open the kittenish sexual subtext with a full-on, well-expressed description of ways and places she likes to have sex. Then she ended on a not-sexy note: "And also: Breast cancer kills tens of thousands of people in this country every year. It’s generally more aggressive and more deadly in young women. Do your self-exams."

Putting aside the fact that cancer of any kind is not a game and that talk of or actions regarding cancer shouldn’t be one, there are other specific problems here. These memes don’t mention breast cancer, so their awareness-raising claims are questionable at best. The note I got this year insisted that "the constant updating of status reminds everyone why we’re doing this and helps raise awareness!!" (punctuation theirs).

The games are also quite seriously off-target. The first one I saw instructed women to post the color of their bras as their status. Really? Many survivors who’ve had mastectomies–even if they afterward chose reconstructive surgery–don’t wear bras at all, finding that surgery on the area has rendered a bra uncomfortable, ill-fitting and sometimes even painful.

One of my favorite comments on the bra game was from my friend Tammy (age 32; diagnosed Stage 2; now Stage 4): "My bra is black. It covers my huge [expletive deleted] lumpectomy scar."

Inciting Anger and Action

Into this most recent ill-conceived, inadvertently hurtful Facebook game with the pregnancy subtext stepped Sally Drees, who was diagnosed with Stage 2 breast cancer almost five years ago, at age 36, while she was trying to get pregnant. She’s a proud and loving stepmother to two boys, but breast cancer crashed into the choices she was making about continuing to build a family.

The diagnosis, the treatment and years of recurrence-prevention drugs (which can lead to birth defects while being taken and, so, are not compatible with pregnancy) would have been plenty to handle. But this past June, with the recommended treatment for her initial diagnosis at last drawing to an end, Drees was diagnosed with a distant, or metastatic, recurrence of the disease. Evidence of breast cancer was found in her abdomen, requiring a hysterectomy and placing Drees’ cancer at Stage 4.

For Drees, this latest Facebook "awareness" meme incited her to anger and action. I spoke with her recently about how she’s responding.

"I went to bed upset by it," she said, "and woke up at 4 a.m. thinking, ‘Let me do my own.’"

In mid-September, Drees launched the 31-Day Project. The idea is to raise $41,000; a dollar for each life lost to breast cancer in this country annually.

Drees is promoting the goal mostly through social-media connections: "I’m thinking, let me see if I can educate people and raise some money along the way."

The funds will be divided between Metavivor, an organization that provides funding for research on metastatic breast cancer and support for those with this diagnosis, and the Pink Daisy Project, which helps younger women in treatment for breast cancer (of any stage) pay for child care, meals, gas, etc., so they can better focus on recovery. Both organizations were founded and are run by breast cancer survivors.

View of Awareness Altered

"My perspective on breast cancer ‘awareness’ has changed," Drees said. "I used to think my life was saved by these treatments and by relatively early detection. I’m not bitter, but the issues of metastatic breast cancer are central to me now."

Only 2 percent of funding for breast cancer research goes to metastatic breast cancer, even though this cancer isn’t fatal unless it metastasizes, she added.

"Thirty percent of breast cancer cases will either begin at Stage 4 or get there. So why isn’t 30 percent of the research money going there too? People see breast cancer as a ‘bump in the road’ kind of situation–fixable. But 30 percent is a big segment, and it’s not acceptable," she said.

Drees’ original plan was to conduct the project during the 31 days of October, in all its pink-ribbons-for-awareness glory.

But enthusiastic friends started spreading the word early (mostly via Facebook), and so the project began in mid-September and will continue until around Oct. 13, National Metastatic Breast Cancer Awareness Day.

After that Drees says there’s no reason to cut the project off. "I’m happy to keep it going as long as people keep donating," she said with a laugh. So far, $7,921.87 (and counting) has been raised.

Drees is glad the irksome meme got her fired up.

"I could sit and dwell," she said, "but I’m much better served doing something. And the time to act on what we believe is not ‘someday’ but now."

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Pamela Grossman is a Brooklyn, N.Y.-based writer, editor and medical advocate and an active member of the Young Survival Coalition and SHARE.