Wednesday, December 16, 2015

Komen is not coming to save us!

Reposting in whole from the Cult of Perfect because she has done such a spectacular job with this!

Komen is not 

coming to save us

So, San Antonio. That was a hell of a week. By now, you may have heard that Dr. Kelly Shanahan (a fellow metster and a seriously smart woman) and I had an interesting conversation with a scientific advisor for Komen, Powel Brown. I wrote a Facebook post about it on my personal wall, and made it public. Here’s what I wrote:
This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.
This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.
Upon reading this, I think I broke the metster portion of the Internet, since the post was shared over 1000 times and the awesome Eileen aka Woman in the Hat also wrote about it on her blog, for which I am super grateful. I got a lot of people saying how brave I was to share this conversation, to expose what a national advisor to Komen actually thinks about us and our disease. But you know what? When you’re dying, when your friends are dying, I mean, what do I have to lose? What’s Komen gonna do to me that cancer already isn’t? Brave is when you’re scared and you do it anyway–but I’m not afraid of Komen, so it’s not actually bravery. It’s just giving no fucks, combined with a whole lotta anger.
One of my friends emailed Komen CEO Judy Salerno about this. And this was her response.
I appreciate the opportunity to address some of the issues you raised in your email to us this weekend. I’m not sure there’s an answer that will satisfy everyone, but this is important to me and I hope we can have additional conversations. 
This starts with an explanation from me about why we do what we do. I promise to be very candid, as you’ve been with us. 
As I write this, I’m thinking about the people I knew who have died of metastatic disease just this past year. One was our Komen Ozark executive director, another was a longtime Komen patient advocate, and another was a dear friend of mine who died last month. There are others, of course, but I mention this so that you know that this is personal to me, as it is to everyone at Komen.
I’ll start with our approach to research. Jill, as you know, we’d like to fund everything that needs to be funded, but the reality is that this disease is complex, its impact is huge, and our resources are finite. Finding cures requires a comprehensive understanding of how breast cancer starts, how and why it spreads, why it affects some women differently than others, and how to better treat it or prevent it.
This is why we at Komen fund along the entire research spectrum, because there are many issues to understand and solve, and what we learn in one area may lead to answers in another area. Some of our research projects – in biology and causation, for example – are not specifically labeled as metastatic research but could have applicability to metastatic disease. That said, we’ve devoted half of our new research funding specifically to metastatic disease in 2015 because it is a priority for us.  
Finding cures through research is, and always has been, at the core of our mission. But we also know that too many people die of breast cancer because they can’t access high-quality healthcare. For that reason, a significant portion of our mission spend is directed to programs in thousands of communities that pay for things like insurance co-pays, diagnostic tests, patient navigators, and other medical expenses, as well as what we call treatment support: transportation, childcare, emergency living expenses, and other things that often stand between patients and their medical care. A list of what we and our Affiliates fund in the community is available here.
Some mistakenly label the community health aspects of our work as “awareness.” It is, in reality, the in-the-trenches work that must be done to help women and men who face breast cancer today, at all stages of the disease. Komen is the only breast cancer organization that funds this kind of large-scale community health work along with a large research program. We do this because it also contributes to saving lives. 
Finally, Powel Brown is an esteemed scientist and a member of our Scientific Advisory Board, which serves as an advisory body to Komen on research and cancer science, but does not advise on our organizational or operational priorities. He was not speaking for the Komen organization, but he is correct that our ability to fund research – or any of our work – depends on the amount of money we’re able to raise every year through our donations and fundraising events. This year, we’ve begun a new donation program which gives donors the ability to fund metastatic research directly. We encourage those who are interested in supporting metastatic research to help us fund those projects through this directed donation program.
We also want to keep the conversation going, through the many venues we have to engage – the Metastatic Breast Cancer Alliance that we helped to found, with metastatic patients directly, and by exploring joint funding of metastatic research with other cancer organizations. 
Like cancer itself, these issues are complex and not easily resolved. There are areas where we may not always agree, but I want you to know I am listening. More importantly, I have identified metastatic disease as a Komen priority, meaning continued investment in metastatic research and help for metastatic patients. Our common enemy is this terrible disease. 
Judith A. Salerno, M.D., M.S.
President and CEO
Susan G. Komen
OK, so, there’s a lot to unpack there. Let me start at the beginning.
Saying “I have friends who died of breast cancer so this is personal to me” is the equivalent of a white person saying “I have a black friend so I’m not racist.” Excuse me while I roll my eyes and thank you for deigning to be friends with the likes of us. If it’s so personal, why is Komen spending so little on research, which is the only thing that will save our lives? Actions show what’s really in your heart, not words. Not platitudes about how much you care and how you’re listening can substitute for concrete actions to support our community.
Then there’s the accusation that we’re criticizing Komen for spending money on direct patient support because we conflate it with awareness. NO. The metastatic community is not stupid. We know that direct patient support is important, and we know that it is not awareness. Please don’t insult our intelligence. What we’re criticizing is the amount Komen spends on what it calls “education.” Here’s a screenshot of the most recent audited financial report from Komen–from their website, so this is THEIR data.
See where it says “Public Health Education”? See the total in that column? Yeah, it says $122,540,737. See what it says for “Research”? $43,396,973. Those numbers are the opposite of what I believe they should be. But the problem is, see where it says “Marketing and communication” in the column on the left? See what that total is for “Public Health Education?” $41,873,249. Of their public health education budget, nearly $42 million of it was literally spent on advertising. Nearly as much as their entire research budget. See, with “education,” you can count your marketing expenses as a program expense by putting something educational on your marketing materials, and then it looks like you’re spending a bigger proportion of your budget on the mission and less on administrative expenses. Can’t really do that with research.
So no, I’m not complaining about the $13 million they spent on “treatment services.” I’m complaining about them spending almost 10 times that much on awareness, a third of which is actually marketing.
Then there’s the part about how Dr. Brown doesn’t speak for them. OK. Then maybe don’t put him in front of the Komen booth at the largest breast cancer symposium in the world and let him talk to people? Maybe don’t put him on your scientific advisory committee?  
My favorite part, though, is that after saying Dr. Brown doesn’t speak for them, she confirms the core of the offensiveness of his comments: Komen won’t do more research until they get more money. An organization that spent $122 million on awareness can’t be bothered to shift any of that money to the only thing that will save our lives: research. 
And then there’s the standard “We’re listening” stuff. No you’re not. You’re talking. And you don’t even realize that you’re lecturing metastatic patients. We’re dying and you’re telling us we shouldn’t complain that you’re letting us die. See what I mean about “I have friends who died of breast cancer so this is personal for me” being eye-roll-inducing?
And this is why Komen continues its steady decline into irrelevance. It’s living in the past, and this is why we as metastatic patients have to realize that they’re not coming to save us. We’re going to have to save ourselves.

Wednesday, December 2, 2015

How to Help Stop Mass Shootings

You know, I've decided. I have stage IV cancer and this week has been a bitch already and I'm turning off the filters.
I am tired of hearing mass shooters referred to as mentally ill. I as many of you have worked with people with mental illness. How many of them had the where with all to have guns? Most of the folks I've worked with are either too delusional from not taking their meds to too wiped out from taking them that they're not planning rampages. Most of the people who have done this are pissed off, NOT the same as mentally ill.
I am tired of praying for victims of crimes that should not be allowed to occur. Prayers may make us feel better but if you haven't noticed they're not changing things much. Words without deeds are worthless. What are you going to do?!?!? If we care about children make sure they are housed and fed and educated.
If you want things like this to change you've got to do some serious work and the people of this nation don't want to do that. We have to talk seriously about guns, who should have them, what types should seriously be available etc. If we say that people with mental illness should not have guns then are we ready to undergo psychological testing to get one? How about training? A test?
We have to stop glamorizing violence in the our culture. Whether it's first person shooter games, the freaking endless war that we're in that only effects those who choose to risk their lives or some of the incredibly gross and violent things that are on tv at 10 pm for adults this year but will be on at noon in syndication next year.
We need to change the places that have long lines for crap and no lines for things that are REALLY important. You don't NEED the new iPhone or half of the crap that millions of people lined up for on Black Friday. But how many of us are at a kids school to volunteer? Maybe even at a school that's struggling, a school where kids don't have responsible role models. When was the last day we went and worked at a soup kitchen or a nursing home or bought toys for kids who won't have anything otherwise?
You know what brought this rant on? My son asking when we leave the United States! This is our country and if we want it to change we have to do something. Here is a link to find your Representatives and Senators
If they have time to talk endlessly about coffee cups, planned parenthood and God know what they have time to work on the real issues IF we make them.

Tuesday, December 1, 2015


After you watch this amazing video, you'll understand why I am supporting Camp Kesem and want to ‪#‎GiveKidsKesem‬ this ‪#‎GivingTuesday‬. There are over 3 million children touched by a parents cancer. Help one of them and donate: or you may mail checks made payable to Camp Kesem North Carolina to the following address: 36 Bryan Center PO Box 90834 Durham, North Carolina, 27708

Wednesday, October 28, 2015

Win a gaming laptop

Images medium

Enter to win a top of the line gaming laptop from Alienware. Laptop includes

  • 13-inch Alienware 13 R2 laptop with Intel ® processor
  • Copper cooling
  • Quad HD+ display
  • Optional graphics amplifier
  • All-day battery life
  • Optional 62 WHr for ultimate on-the-go action
  • Sunday, October 25, 2015


    Sorry for the caps but really how often can you say that. Travelzoo is giving away a trip that includes stops in NYC, London and Hong Kong!. Easy Entry here!

    Saturday, October 3, 2015

    Real cancer charities that could use your support

    As promised I have made a list of cancer charities ( both breast and general ) that I support. You may notice that you haven't heard of most of these organizations. They spend very little money on ad campaigns and PR. Their money is spent on research and patient services not on publicity and that is why I support them. 

    If you want to support general cancer research - Cancer Research Institute 

    If you want to support to breast cancer researchBreast Cancer Research Foundation – Incredibly low administrative and fundraising expenses.

    If you want to support metastatic (Stage IV) breast cancer research
    Metavivor – 100 percent of donations go directly to metastatic research, Organizational expenses are paid for with sponsorship money.

    If you want to help women access free or low cost breast cancer screenings or mammograms
    Planned Parenthood, Local programs where you live, here it's the Pink Ribbon Project affiliated with the local hospital. 

    If you want to support programs for young adults (diagnosed before 40) with cancer - Stupid Cancer

    If you want to support programs for young adults (diagnosed before 40) with breast cancerYoung Survival Coalition

    If you want to support a kid whose parent has cancerCamp Kesem

    If you want to send a breast cancer family on a retreatLittle Pink Houses of Hope

    You may notice that the biggest and most well known cancer charities are not on the list. Here's why;

    American Cancer Society – For years I thought that the money donated to ACS stayed in my town, does not stay in your community but is pooled. Most of their giving goes to research. The problem is that approximately 60 percent of funds are used for research and patient support and the other 40 percent goes to salaries and fundraising expenses. That spending is why ACS is a household name.  They receive a two star rating from Charity and the American Institute of Philanthropy gives them a “C” for financial efficiency.

    Komen – Oh Komen, when I was first diagnosed in 2006 you were my first stop. You’re Komen for the Cure. Here’s the problem with Komen,  an organization that is supposed to be looking for the cure spends little money actually looking for the cure. Nearly 40 percent is spent on “public health education and awareness”, I don’t know about you but I don’t know anyone in the US who is not aware of breast cancer. They've partnered with the fracking company Baker Hughes despite ongoing concerns that the chemicals used in fracking are causing cancer. They sue or send cease and desist letters to anyone they find using the phrase “For The Cure”. They tried to mess with Planned Parenthood.  Their CEO makes A FORTUNE, more than $600,000 a year substantially higher than other charity salaries. Sorry I get a little ranty when it comes to this charity.   They receive a two star rating from Charity Navigator and there are many questions about the financial efficiency.

    If you're looking for a local charity near you to give to let me know, I'll help you find one. 

    Wednesday, August 26, 2015

    Win a $250 Ulta card and more! is giving away a $250 gift card to Ulta plus a six piece set of skin nourishing products from AHAVA Cactus and Pink Pepper Collection. 

    Tuesday, August 25, 2015

    Win a GoPro Hero4 Session

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    Give it up for GoPro’s smallest, lightest, most convenient camera yet. All the quality, waterproof reliability you love about GoPro in one itsy-bitsy package—and it could be all yours for free.

    Easy entry here. 

    Tuesday, August 18, 2015

    Moab 2 Mountains Giveaway

    This is a serious adventure prize. You win

    5-day Moab to Rocky Mountains Adventure for Two

    2-day Safari tent stay in Moab for two from Moab Under Canvas. Just minutes from Arches and Canyonlands National Parks, the camp is surrounded by deep canyons and towering plateaus.
    3-day llama camping trek through the Rockies in Colorado for two from Gociety. A guide will prepare your meals and take you through dense timber forests and high above the trees with epic views.
    Plus thousands of dollars in gear. To enter click here!
    Good luck to all and thanks Hipcamp!

    Tuesday, August 11, 2015

    Win a top of the line washer and dryer!

    Samsung Washer & Dryer Giveaway
    Easy entry via Gleam to win a Samsung washer and dryer. Valued at $3,400 I hope it folds and puts my laundry away too. Good Luck!

    Tuesday, August 4, 2015

    Win a trip to Beaches resort

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    Your vacation Includes: 
    -All Meals 
    -Premium Brand Liquor 
    -Luxurious Accommodations 
    -Gourmet Dining 
    -Scuba Diving 
    -Roundtrip Airport Transfers 
    -All Drinks 
    -All Tips and Gratuities 
    -All Hotel Taxes 
    -Exchange Privileges

    Enter via Gleam by 8/11/15

    Win a huge tech package - 5 winners

    First Place: 
    One (1) Playstation 4 Console OR One (2) Xbox One Console 
    One (1) 12 Months Playstation Plus OR One (1) 12 Months Xbox Live Gold 
    One (1) Tub of GFUEL (flavor of your choice) 
    One (1) GFUEL T-Shirt 
    One (1) GFUEL Shaker cup (color of your choice) 

    Second Place: 
    One (1) Playstation 4 Console OR One (2) Xbox One Console 
    One (1) Tub of GFUEL (flavor of your choice) 
    One (1) GFUEL T-Shirt 
    One (1) GFUEL Shaker cup (color of your choice) 

    Third Place: 
    One (1) Tub of GFUEL (flavor of your choice) 
    One (1) GFUEL T-Shirt 
    One (1) GFUEL Shaker cup (color of your choice) 

    Fourth Place: 
    One (1) Tub of GFUEL (flavor of your choice) 
    One (1) GFUEL Shaker cup (color of your choice) 

    Fifth Place: 
    One (1) Tub of GFUEL (flavor of your choice)

    Thursday, July 30, 2015

    Win a HUGE vacation giveaway package

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    The author of I Will Teach You to Be Rich is giving away an amazing prize package that includes an airline ticket anywhere, travel cash, an iPhone a Macbook and more.Enter here!