Monday, May 31, 2010

Memorial Day Call to Arms, 2010

Memorial Day is not just the start of summer. It is a day set aside to honor those who have fought valiant battles and gave the ultimate sacrifice, their lives. Everyone has someone in their family who is a veteran, some even have lost them in wars over the years. Some have family serving right now in the armed forces.

At this time, we honor all who have served. And we will always remember those who have been lost.

On another front line, there is a tender army fighting every day for their lives. They fight while they keep their jobs, take care of their kids, keep the family together and try to live the best they can. They have wounds from the battle, not from bullets, but from surgeons and chemicals. They keep going, they look forward and try not to look back.

Some, however, are challenged with new attacks from a returning enemy. They are suddenly classified as being at the end of their fight when, in fact, they have only just started it. No one can imagine what it is like to fight every day and live from scan to scan. But they do so, bravely and valiantly.

There have been casualties in this war. In fact, we lose over 40,000 a year. An entire generation of beautiful, vital, living, breathing, moms, daughters, sisters, lovers and friends are gone. This Memorial Day, we honor those lost on the front lines of breast cancer. May someone, someday, see the figure of 40,000 deaths a year, and make a sea change in the funding for research in the cure for this disease.

There are other, horrible diseases. They need funding too. But there is an inequity and it must be addressed. AIDS in America, gets four times the funding that breast cancer does, and the annual death toll is under 11,000 a year for the patients who are afflicted with that disease. We are not suggesting giving less to HIV/AIDS in America, but level the playing field so women with breast cancer can also have the types of drug combinations that keep AIDS patients alive and thriving for 25 plus years.

When 40,000 women are taken from America every year, we ask how vital it is to spend $500,000,000 just for the take off of the Space Shuttle that serves as a giant service station in space. Is it possible to reduce the number of flights to change the spark plugs on the International Space Station and take that money and give it to an NIH lab currently working on better detection, more effective treatments, and gene identification for targeted eradication of this disease?

There are many ways money can be redirected. We don’t have the answer. But we have just one request: We ask that next Memorial Day, may this list be shorter.

Our Warrior Angels from 2008-May 2010
Phyllis (Wats)

Kari Lynn

This post was reprinted and updated from last year by popular request.

Sunday, May 23, 2010

How Cute Are We?

To mount a successful fundraising campaign in 2010, one must have a message: sexy, glitzy, cute, and fun(!). If you have a catchy phrase, sprinkle in some sparkly graphics, and make a Facebook page that shows your sheer coolness, the money will roll in. Your mission? Not necessary. Today, in our quick, sound-bite, entertainment blog world, just have these facts: We are “in” and you will be “in” too if you give us your money.

There is a lot of competition out there in the breast cancer world. You have the “organizations” started by people who have never had breast cancer but state on their websites that “they can imagine how bad it must be.” Or they are run by well intentioned wealthy women looking to give back, but are not close enough to the running of the organization to know how it is affecting the women they are supposed to be helping. This is evident in organizations that are glitzy to the civilian donor, but the actual survivors are reading the site's dire predictions of their poor outcomes being scared half to death.

Then there are the big guns. They have millions coming in, no one quite knows where the money goes to, but they are assured that giving to The Pink will protect them from breast cancer.

Recently, I was nominated to win the “Humanitarian of the Year” award from a big gun cancer organization. I was honored. All I could think of was how much exposure it would give our Foundation. I was then informed that in order to “win” the “award” I would have to guarantee I would raise, at minimum, $70,000 for this organization. I have been in the non-profit world since 1991 and I have never heard of an awardee having to pay to win. I declined. If I could raise $70,000 it would be for the No Surrender Breast Cancer Foundation - not for the more-money-than-God organization demanding it.

Have I raised that amount since the offer? No. Grants are out there. Corporate sponsorship letters are out there. Donation requests to individuals are out there. A brand new book is out there and we are being praised for the work we do.

We have a beautiful and intelligent website. It is not cute, trendy or pink. This is because it is run by actual breast cancer survivors who know that breast cancer is not cute, trendy or pink. We have a real mission. We are serious but hopeful. We give the facts. We get you through your breast cancer. You don’t need flash to do that. You need a heart and the experience of knowing how lost a woman feels when she is diagnosed with a primary or advanced diagnosis. We offer 24/7 support that is closely monitored so that spam and porn does not appear on posts by women who are struggling to get through the day. There is a lot of work involved keeping a site up and running, up to date, message forums free of spam and making sure every posts is answered. And we don’t stop there, either.

We have programs that shake up the traditional dictates by the big dog organizations. We dare to question waiting until the age of forty for a baseline screening test - not to mention the latest death sentence of waiting until fifty. We have buried too many young women who were diagnosed before the age of forty and as fellow survivors, we are fighting for our sisters, those who already have breast cancer and those who don’t even know they have it yet.

It is our mission to get women the best care for their disease and to make sure they know their risks before they even have breast cancer so they will know that if they can find their cancer early, they have the greatest chance of survival. This is especially true for young,  African American women and triple negative breast cancer. We don’t have any celebrities helping us with this. So we go to churches and workplaces to raise awareness.

When your “base” is comprised of well-heeled people, for example, if we were raising money for a political party, it would be easy to raise money from our members. But our base is breast cancer survivors and their families. They are tapped out. They are drowning in medical bills and co-pays and cut back hours because they can’t work the way they used to because of breast cancer. So we seek outside assistance -  but we remain true to who we are. And there lies the rub.  When you keep the reality of breast cancer up front and don't bury it in pastel colors and nicknames, it isn't pretty to civilians. But to those newly diagnosed and in treatment, it is a clear, deep well of truth that you are thirsting for. We focus on those who need us, not sugar coat it for those who can help us. That is probably why we don't get the donations the others do.

What we need are people who understand that we cannot do it alone, that we are helping people across the world through our website, and we are actively fighting for the best care and screening for all women, young or old, healthy or well.  We do this while undergoing tests and treatments ourselves, because as breast cancer survivors, the tests, treatments and trials never go away.  As the cutsie organizations continue to grow and rake in the money and that money goes towards making them even more cute and not doing a damn thing to actually help women with breast cancer, our real work continues, for as long as we can, no matter how we feel. We will fight for and be there for you, when you need serious, real hope and help.

We are by survivor, for survivor- we are you. Our motto is, “hope happens here.”   And it does. Whether or not we can raise money so we can grow the way we need to, we will work very hard and keep you on the cutting edge of treatment. Because we are survivors too. We know how you feel. We feel the same way. That is why we are No Surrender.

“Much of the world’s work is done by people who don’t feel very well.” Winston Churchill.

Thursday, May 20, 2010

See Our Interview

Look Good Feel Better Canada, run by the amazing and talented Sherry Abbott, interviewed me for their annual magazine.

Click on this link

It starts on page 30-31.


Wednesday, May 12, 2010

Connection between Colitis and Pancreatic Cancer

The following article reveals that people who have a history of Crohn's or Colitis are at a greater risk of developing pancreatic cancer. This may lead to early screening techniques for the deadly disease and may improve the prognosis of those diagnosed. More studies are still pending, but if you have inflammatory bowel disease, whether male or female, bring this article to your next doctor's appointment.

Irritable Bowel Diseases Sharply Boost Risk of Pancreatic Cancer

Elsevier Global Medical News. 2010 May 3, M Sullivan

NEW ORLEANS (EGMN) - Patients with irritable bowel disease are significantly more likely than the general population to develop pancreatic cancer, according to the first prospective study to assess standardized incidence rates of both disorders.

Men with ulcerative colitis are at a particularly high risk - more than 6 times as likely to develop pancreatic cancer as are men without ulcerative colitis, Dr. Jason Schwartz said May 3 at the annual Digestive Disease Week.

If the data are confirmed in larger studies, they may justify population-based screening for patients with either ulcerative colitis or Crohn's disease - particularly men. "It's too early right now to make screening recommendations, but providers should keep in mind that males with ulcerative colitis may harbor an inclination to develop pancreatic cancer," said Dr. Schwartz of the University of Utah, Salt Lake City. "Perhaps in the future, this study may open the door to screening for pancreatic cancer in patients with irritable bowel disease, similar to what we now do for patients with IBD who have an increased risk of colon cancer."

Dr. Schwartz and his colleagues extracted 10-year data on irritable bowel disease and pancreatic cancer cases in Utah from the University of Utah Health Care system and the Utah Cancer Registry.
From 1996 to 2006, there were 2,877 adult cases of irritable disease in the database. The investigators then matched these cases to pancreatic cancer cases in the cancer registry and the Utah population database. "What we found was striking and unexpected," Dr. Schwartz said. "We felt there would be an association, but we were surprised by the strength of it."

The investigators found 12 cases with both IBD and pancreatic cancer. Even after excluding five cases - because the cancer was diagnosed before the IBD - the association remained strong. "The expected rate of pancreatic cancer in Utah is 4/100,000 person-years," Dr. Schwartz said. "The association that we saw worked out to be 7/15,000 person-years."

All of these cases occurred in men with ulcerative colitis. So while the overall risk for pancreatic cancer in any patient with either ulcerative colitis or Crohn's disease was 3.4, men with ulcerative colitis were 6.22 times more likely to develop the cancer than were men without ulcerative colitis.
The pathologic connection between IBD and pancreatic cancer has not been fully explored. However, repeated bouts of inflammation probably are involved, he said. "The intestines also become more permeable and allow bacteria to come into contact with the pancreas and liver," which may contribute to the process, Dr. Schwartz said.

Sunday, May 9, 2010

Why the Before Forty Initiative Needs Your Help

The New York Times has done a very good job breaking down what will and will not be covered when the health care regulations take effect. The following is a question about preventative cancer screening.

Please note: The US Task Force does NOT believe women should be screened for breast cancer until after their 50th birthday. Which means, if your insurance company was covering baseline screening, it now has a United States Government Guideline to deny you something that could save your life.

The Before Forty Initiative is fighting to make the age of 35 the standard of care for a woman's first baseline screening test and the age of 30 for high risk groups.

We need your financial help to fight for the lives of young women across the Nation. Please support the Before Forty Initiative.

May 7, 2010  
Does the Law Encourage Preventive Care?
What about prevention? Is there anything in the law concerning preventive medicine? — Anthony Sionni

There are several prevention-related provisions in the new health law, and patient advocates are generally pleased with the new requirements. “From our perspective, it’s a big step forward,” said Stephen Finan, senior director of policy for the American Cancer Society Cancer Action Network. “Prevention has been underfunded and largely ignored over the last 10 to 15 years.”

Starting in October, new private health plans will be required to cover preventive care and screenings that are recommended by the U.S. Preventive Services Task Force at no charge, including vaccinations and cancer screenings.

Next year, seniors will be able to receive annual check-ups and recommended screenings without having to share in the costs. They’ll be offered personalized prevention plans that take their health risks into account.

There are very specific provisions for certain groups. Pregnant women who are on Medicaid must be provided smoking cessation counseling and drug therapy, for instance.

More controversially, starting in 2014 the new law will allow employers to offer premium discounts and other incentives of up to 30 percent of the cost of employees’ health coverage (and up to 50 percent in some instances) if workers participate in wellness programs and meet health targets. Current law permits discounts of only 20 percent. Patient advocates fought against the increased discounts, arguing that the higher limits might be a backdoor way of making health coverage more expensive for people with chronic conditions and other medical problems, which the new law is supposed to outlaw.
Public health gets a boost with a new Prevention and Public Health Fund, which will provide money for community-based prevention and wellness initiatives like adding more healthy options to school lunch menus or creating public parks and bike paths.

Day to day, what you may notice most, however, is that chain restaurants and vending machines will have to start listing calorie counts on their menus. Whether that prevents you from ordering unwisely is another question entirely.


With all due respect to Bike Paths- getting diagnosed while a tumor is still small enough to treat, before your fortieth birthday, so you can survive breast cancer, should be the priority.

Thursday, May 6, 2010

Sirius-ly Fun

Yesterday,  I had the honor of being the guest of Dr. Silvia Formenti and Dr. Abe Chachoua on The Doctor Show (Sirius Radio 114/XM 119.)

For an hour and a half we talked about the new book, Intimacy After Breast Cancer, the No Surrender Breast Cancer Foundation and our mission, and all the wonderful women on the Support Forum. It was a live program where we took calls from listeners. Even though I was nervous about my first radio appearance, they quickly put me at ease and I had a fantastic time! 

Thank you to Dr. Formenti and Dr. Chachoua for giving me this wonderful opportunity.

The program will repeat four more times in case you missed it. And be sure to tune in to the Doctor Show every Wednesday at noon eastern to hear the doctors every week!