In Memoriam: Lisa Boncheck Adams
“…I search for powers to rise above, get out, fly away…
The words of disease
become words my brain gravitates to.
The ebb and flow of cancer,
And so too,
Of death….” –Lisa Boncheck Adams
Yesterday a woman of great courage died. Lisa Boncheck Adams chronicled her experiences of metastatic breast cancer in prose and poetry . Diagnosed Stage II breast cancer in 2006, she cleared the 5 year mark and was NED (No Evidence of Disease) for 6 years. She is part of the 30% of breast cancers, that despite being caught early and despite being a “5-year survivor” die of metastatic breast cancer.
Like many others, she advocated and brought her life out into the open to say that breast cancer death rates have not changed in since 1970. An enormous amount of donated money, including money from walks and runs, is wasted on out-of-date awareness campaigns.
Below is a post written around the October pink that angers so many people with breast cancer. Lisa participated on The Stream discussing these issues.
The Myth of Pink
Pinktober—I’d never heard this appellation before using twitter in October 2011. That’s when I joined a #BCSM (breast cancer social media) tweetchat and learned how many women with metastatic breast cancer feel about this month.
I’ll never think of October in the same way.
October is Breast Cancer Awareness Month and pink, and the pink ribbon started by the Komen Foundation, is everywhere. Yet there is only one day in October that is dedicated to remembering that breast cancer metastasizes and kills. That day is October 13th Metastatic Breast Cancer Day.
Interview on The Stream
In an October 11th interview on The Stream, Gayle Sulik, sociologist and author of Pink Ribbon Blues describes “pinktober” this way:
“What we have now is visibility for the sake of visibility…
When you see a pink building what does that… make you conscious of…with respect to breast cancer?
We’ve…lost sight and moved…into a brand… a breast cancer brand with a pink ribbon logo.”
In the same interview, Dr. Susan Love, renowned author, researcher and breast cancer surgeon agrees, “I think that when the NFL is wearing pink, we have…achieved awareness…the goal has to be beyond awareness…it has to be…to finding the cause and preventing [breast cancer] all together.”
Breast Cancer Bloggers
Breast cancer bloggers are overwhelmed with the onslaught of pink. Jackie Fox reposted her post on the landmine that is October and Lori Marx-Rubiner jumped in to tackle Breast Cancer Charities of America’s advertisement with “a nude Gretchen Christine.”
The Tellingknots blogger says, “Cancer isn’t cute. It is a mortal illness. It disfigures. It kills.” While Yvonne Watterson writes, “How jarring it is to contemplate disease and death juxtaposed with all the trappings of breast cancer awareness – ribbons and teddy bears and perfume bottles and cupcake liners. Such trinkets would not be out of place in a 19th century nursery rhyme about little girls, very far removed from the ravages of a disease that kills.”
Gayle Sulik explains in the interview on The Stream, “It is very good for companies… jumping on the pink ribbon bandwagon they are making a lot of money…many of the companies don’t donate, some do…The profit margin is significantly higher than the donation…they are benefiting more than the charities are benefiting.”
Here is an example of what Dr. Love and women in the breast cancer blogging community are talking about. Ann Silberman, author of the blog “But Doctor…I hate Pink, and now someone with metastatic breast cancer, received this email in October 2012:
“Pornhub.com needs your clicks to help Save the Boobs! October is finally here, and while some will be bundling them up for the colder weather, and others will be showing them off in the naughtiest of costumes come Halloween, one thing’s for certain, this month marks a time for saving them – that’s right, it’s National Breast Cancer Awareness month.
During October, Pornhub.com, the leading destination for online adult entertainment, will donate 1c for every 30 views of its ‘Small Tits’ and ‘Big Tits’ videos, meaning the more boobs that are viewed, the more money that will be showered upon the Susan G. Komen Foundation. And with the site attracting millions of clicks per month, the amount raised over the next 31 days will be considerable.
It doesn’t matter if you’re into itty-bitty-titties, the perfect handful, jumbo fun-bags or low-swinging flapjacks, what matters most is that your kind and selfless gesture will go a long way towards helping our sisters to find a cure.
This isn’t the first time Pornhub has taken action to combat breast cancer. Six months ago, the website brought their “Save the Boobs” bus to NYC to rescue Manhattan’s mammories by spreading awareness.
So how can you help save the boobs this time around, you bravely ask? Simply visit the landing page on Pornhub’s site (link available upon request) and follow the prompts, or head to the ‘categories’ tab on Pornhub.com’s home page and choose either “Small Tits” or “Big Tits” videos, then sit back and let the good times bounce. The Save the Boobs web page will keep track of the total unique visits for the month so be sure to encourage your red-blooded friends and family (yes, tell your fathers too) to become a hero of the headlamps and a champion of the cha-cha’s! While on the page you can also tweet the link to your social circles. Together we can give fundraising our breast shot”
Needless to say, Ann’s reaction was less than celebratory.
Quote from Lisa Adams
Lisa Adams, Huffington post blogger explains in The Stream interview, “Awareness should be about education… we need to teach accurate facts about breast cancer…you can have early detection of breast cancer and still have it metastasize and get metastatic breast cancer which is incurable and which is what I have. You can do everything right and cellular biology is more powerful than that.”
Many in the breast cancer blogging community believe that metastatic breast cancer needs to be the focus of the entire month of October, not just October 13th. MBC is what is killing family members. “I did everything I could and I achieved NED (no evidence of disease at 5 years) status but that doesn’t mean that the cells aren’t still there and that they can’t come back. There is this focus on the positive stories, the positive outcomes…there is this focus on surviving and putting cancer behind you and the truth of the matter is that in 30% of the cases women and men will have metastases even if they do everything right.” Lisa states. Lisa is the mother of 3 small children.
When people do not know that 90 percent of those with metastatic cancer die of the disease and 100% of the deaths due to breast cancer occur in those with metastatic disease, there is a problem, according to Dian Cornelliussen-James, co-founder of Metavivor.
Even with all the awareness and early detection, one third of the people diagnosed with breast cancer will die of it. Much media attention is brought to bear to advertise the breakthroughs in breast cancer research yet the truth is that the death rate from breast cancer is basically unchanged since 1970.
“We must present the good and the bad…we don’t want to take away your hope…if 30% later have a metastases why aren’t 30% of the stories …presented in breast cancer awareness month by the media about women and men with metastatic disease?” Lisa asks.
“There is a lot of collateral damage from the treatment…we act as if you go through the treatment you’re fine, you go on with your life and yet we don’t talk about chemobrain, the numb toes, the pain and the swelling of the arm. “ Dr. Love explains.
Not Everybody Is Cured
Gayle Sulik describes October’s pink this way, Pinktober “tends to be celebratory…it’s wonderful, we have awareness, you’ve won your battle. But…it is much more complex than that…not everybody is cured…we lose that with the pink.”
I have a personal interest in more research dollars being moved from the easy awareness campaigns to the more difficult research on cell biology and metastases. To have my mother at my wedding as the matron of honor, we held the wedding at her bedside in the hospital. I am so grateful we did this because she died two weeks later of metastatic breast cancer.