Sunday, December 26, 2010
We know that there are certain behaviors that can increase our risk of developing breast cancer. Those same risk factors increase substantially after we have been diagnosed and treated for the disease. The two biggies? Our weight and exercise routines and alcohol consumption. Study after study has shown that alcohol after breast cancer can increase your risk of recurrence by as much as 30%. If you lose weight and exercise, you can decrease your chance of recurrence by as much as 50%.
So what are we doing? I am not excluding myself here. I enjoy my gin with the enthusiasm of an Evelyn Waugh character. But I am making a resolution to limit my Juniper Berry juice to once or twice a month. I have had chemo- twice. I can have seltzer.
Because of recent surgeries, my exercise routine has taken a hit and over this holiday I became the Christmas Cookie's best friend. It all stops. I know how bad sugar is. I know I have to get back on track as soon as possible to fight my cancer from making a comeback.
While others make New Year's Resolutions to improve their lives or to fit into their skinny jeans, we have to make our resolutions to stay alive.
Join me, won't you? Let's lose the weight, work up a sweat and cut down or eliminate the libations. When you are tempted to cheat, remember what the Adriamycin looked like being injected into your IV. If that doesn't do it, then nothing will.
Wednesday, December 22, 2010
You still have FULL and COMPLETE access to our main website- the heart of No Surrender:
Please stay tuned for more information!
Sunday, December 19, 2010
We did not start out thinking that we would become what we have. This foundation started as a support forum to bring women together who had been diagnosed with breast cancer. The Circle, as it was known, began to grow and grow as new women passed through their treatments with the help of their sisters in the Circle and they, in return, reached out to other new women as their journeys began. It became a circle of hope, faith, friendship, support and strength.
We also suffered our losses. Dearly loved members died from this awful disease leaving young children, or losing their lives before they could even start them. This led to the science and advocacy of our foundation. We started our website to educate, empower and save the lives of every woman who has heard the words, "You have breast cancer."
Without an endowment, without any funding, without anyone to turn to for financial help, this foundation was built. We are here for anyone who needs us twenty-four hours a day, seven days a week. We are where you find evidence based research information that can be taken to your doctor to ensure you are getting the very latest treatment and care. We are where you can turn to to learn what to do, what to wear, what to eat, what to expect before, during and after each treatment you are about to endure.
We all want a cure for breast cancer. There is none. Research is the key to getting us closer to that elusive cure. But what about the woman who is in the trenches fighting her breast cancer? She needs us and she needs us now. We are the bridge between the diagnosis and the cure. How? We get you through your breast cancer as if you were a member of our family while the researchers work on the cure. We are out in the community spreading awareness of the importance of early screening for young women before the age of forty to save their lives through early detection of Triple Negative Breast Cancer.
We are not doctors. We are your sisters. We have been through everything you have. The chemo, the surgeries, the radiation and the after effects of the treatments. We know what you need and what you are going through. We don't want anyone else to have to suffer. So we continue - we will help you get through this, we will work hard to keep you up to date on everything you need to know, now - and we will tirelessly endeavor to save the lives of the young women who don't even know they have breast cancer, yet.
WE NEED YOUR HELP, NOW.
In order to keep the No Surrender Breast Cancer Foundation running and growing and reaching out across the world, we need your financial support. If we have helped you in any way, we ask that you please make a donation. We are a recognized 501 c3 not for profit foundation and it is 100% tax deductible.
This is a crucial time for us and without funding we will not be able to fulfill our goals and we have dedicated ourselves to those of you who are the survivors, in honor of those who have gone before us. Please help us keep this mission moving forward.
Thursday, December 16, 2010
From the New York Times:
F.D.A. Plans to Revoke Approval for Breast Cancer DrugBy ANDREW POLLACK
The decision, which is rare for the F.D.A., has been anticipated since July, when an F.D.A. advisory committee voted 12 to 1 in favor of rescinding approval.
The F.D.A. said its recommendation was the start of a process, and that for now, the approval for breast cancer will remain in place and patient access to the drug should not be immediately affected. Genentech, the drug’s manufacturer, will have 15 days to request a hearing. It is expected to do so.
Still, the move could provoke an uproar because various breast cancer patients and some patient advocacy groups have urged the F.D.A. to keep the drug approved and not deny patients a chance at what they say could be a life-saving therapy.
The debate even took on political overtones, with some Republican lawmakers saying the move was nothing more than an attempt at cost control, the beginning of rationing under the new health care law.
Other breast cancer advocacy groups, however, have agreed with the F.D.A.’s decision, saying patients need drugs that prolong lives or improve the quality of lives, which Avastin had not been shown to do.
The decision seems a close one. Indeed, European regulators decided Thursday to retain the approval of Avastin for advanced breast cancer.
Avastin, which is sold by Roche and its Genentech subsidiary, will remain on the market as a treatment for other cancers, such as lung and colon cancer. So oncologists will still be able to use Avastin for breast cancer on what is known as an off-label basis.
However, insurers will be less likely to pay for such off-label use. And breast cancer treatment will no longer be part of a program in which Genentech caps yearly spending on the drug to $57,000 for patients with annual incomes below $100,000. Without the price cap, Avastin would cost about $88,000 a year for a typical woman with breast cancer.
Avastin is the world’s best-selling cancer drug, with annual sales of about $6 billion. Analysts have estimated that revocation of the breast cancer approval could cost Roche $500 million a year or more in lost sales.
The rescinding of the approval was done not under the new health care law but under a system set up in the 1990’s to bring drugs for serious diseases to the market quickly, subject to further studies to confirm the drugs are effective.
Avastin was given such accelerated approval as a treatment for advanced breast cancer in 2008.
But in those further studies, the drug seemed substantially less effective than in the clinical trial that led to the accelerated approval. Avastin did not prolong lives and delayed the worsening of the cancer by only one to three months, while increasing side effects.
The F.D.A. advisory committee voted 13-0 in July that the new studies did not confirm the benefit of the drug.
Thursday, December 9, 2010
Wednesday, December 8, 2010
"If ever there is tomorrow when we're not together, there is something you must always remember: You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.” Winnie the Pooh
Elizabeth Edwards was a high profile woman who touched all of our hearts with her brave battle against breast cancer. As a member of the Sisterhood, we were able to personally relate to her trials and all that she was enduring. When her cancer progressed to her bones, we embraced her as we do all of our fellow sisters. Last night's news was a shock when we heard that she decided to stop treatment. It sounded, based on the news reports, that she still had time left. Unfortunately, that was not to be the case because today she died. The Facebook and Support Forum postings are full of sadness, anger at this terrible disease and, also, fear.
I want to take a moment to talk to all of you who are newly diagnosed, just out of treatment, or even an old timer who had a "similar" diagnosis as Elizabeth Edwards did. I have received several messages in the last two hours and sometimes we need a gentle reminder of the snowflake.
Many years ago, when mentoring a group of women who had all started chemo together, if they heard of another woman who was not doing well they instantly put themselves in her place. I did the same thing back when I was just out of treatment. If a friend of a friend's mother-in-law died, I would be convinced that her fate would be my own. It took time and careful study to recognize that I had to stop doing that because no two people are alike. Your pathology report may have the same wording as a fellow sister's, but the pathology inside your body is yours and yours alone. Your DNA is as individual as a snowflake that flutters down from the sky and lands gently on your daughter's ponytail.
It is human to identify with Elizabeth and others who have gone on before us, but it is inaccurate to put yourself in their position because you also had the same breast cancer diagnosis or are on the same medication for treatment. Your immune system responds in its own unique way. Please don't worry that this means that you, too, will have something terrible happen. You must move forward, look forward and live each day fully. Do whatever you have to in order to stay healthy, but live your life.
Tuesday, December 7, 2010
The notice of this news can be found HERE
From all of us at the No Surrender Breast Cancer Foundation, we send our deepest condolences to her children.
God Bless You, Elizabeth. Today, you were reunited with your son. There must have been much joy in heaven.
Monday, December 6, 2010
I find this news upsetting on so many levels. The first is the No Surrender in me. I do not know her case, nor do I know the extend of her progression, but I do know many women who have lived with liver mets for a long time. There are chemo's available for it, along with radiation techniques. The other deep sadness is, of course, that yet another wonderful, loving, giving woman is enduring the horrors of breast cancer. When will it end? How do we change our lives to prevent this from happening to the next generation of women? Lastly, even though there has never been any concrete evidence to prove this, many doctors and survivors believe that stress can decrease our immune system's ability to fight invaders. In this case, cancer cells. The amount of stress Mrs. Edwards has been under because of the actions of her estranged husband could certainly qualify as a contributing factor.
How incredibly sad and unbearably infuriating all of this is.
Stepping out of my place, because I am not a doctor, but simply a fellow survivor and patient advocate, I offer this:
Mrs. Edwards, I do not know your medical case or the extent of your progression. But I do know there are chemotherapies out there that can help you fight. You have an amazing doctor who has been a trail blazer in Triple Negative Breast Cancer. She is a leader in the field. I am updating this letter to you because I have just read that all avenues have been exhausted. I am so very sorry to read that news. Perhaps you could try our EdgeCam regimen of supplementation, if Dr. Carey approves it, to ameliorate some of your side effects. I do not know the answer. But I do know that if you have decided to do nothing more and enjoy your time left with your beautiful children, please know you have millions of fellow sisters holding your hand across the miles.
May God bless you and your family.
We are all Standing By You
Stand By Me
Saturday, December 4, 2010
“How ARE you?” This is not an inquiry after your health, it is more of a “ you can tell me, are you going to die?” No matter what your answer, they still look at you like you are hiding something. Or you are told, “You look GREAT!” Really? As in, I look smokin hot? or I look like who-did-it-and-ran but for someone with cancer it could be worse?Then to make matters worse, enter stage left, the wise sage who has never been sick a day in their life, who offers this tidbit, “You should be very grateful you are here.” Do they mean “here” listening to their drivel or “here” as in above the grass?
In the imaginary thought bubble that floats over all our heads the following range of responses to all this chit chat is, “No, I’m not dying today, but you may be if you keep pushing me.” “At least I have cancer as an excuse for why I look this way, what’s yours?” “The only thing I will be grateful for is if you please go away.”
So how do we get through the holidays?
Don’t go anywhere that will make you feel bad
What does that mean? If you are invited to a party of vapid, uncaring idiots, don’t go. But if you are invited to a place that might be fun, that might have interesting people who don’t care if you had cancer or not, by all means go. There is no law against asking the hostess who will be there. If you don’t think you can handle the crowd, bow out.
Dress to kill
Look, everyone is expecting you to show up in a hospital gown. Wear something that makes you look absolutely stunning. Show off that recon. Follow the makeup tips below for a special holiday glow. When someone says to you, “You look great” answer, “I know.”
Avoid Children if you have to.
If your cancer was responsive to estrogen and your doctor has thrown you into chemical or surgical menopause, and you have never had children and will now not be able to, seeing little children for the first time could be heartbreaking. If you have to pass on a party because the wound is still open, it is OK. You have to protect your heart. Wait until you have had time to accept the loss and can love being around kids again without bursting into tears.
Watch what you drink
What meds are you on? If you have been abstaining from alcohol because you know drinking increases your risk of recurrence, you may not be aware of drug interactions. If you think it is safe to take a drink because you are at a party and you also popped a Xanax before you left, you may have an unforgettable time, literally.
Don’t push joy away because you were sick
Don’t punish yourself and not accept invites because you had cancer. Your life is not over by a long shot. The longer you are out of treatment, the better you will feel about public appearances. Check out Chapter 9 in Intimacy after Breast Cancer, to see what I mean.
Have fun. Avoid what you must, embrace what you want. It is OK to say no but it is also OK to give yourself permission to find Comfort and Joy.
Holiday Make-Up Tips:
Wear a shade closest to your own, then top it with a deeper shade on your forehead, noes and upper cheeks. This gives the illusion you have had some sun. Dior makes a Spray Bronzer that you can spray onto a large blush brush and sweep over your cheeks and forehead for a slight glimmer.
After you apply eyeliner, sweep a light, shimmering shade over your entire lid, and up to the brow bone. This opens up your eyes. Then take a deeper shade and go over the eyeliner with it, blending the edges for a dramatic, evening look
Red lipstick may look great on tv and in ads, but to brighten your face, choose a pink or peach tone. It will compliment your complexion rather than compete with it.
Estee Lauder Futurist Age Resisting Make-up Foundation
Creamy, medium coverage that does not settle in pores or fine lines.
Dior Bronze Sun Powder Spray
Spray on brush or makeup applicator, then apply. Lovely glow that makes you look heathy.
Nars Blush and Lip Color Stick
Great creamy blush, for lips, make sure you apply moisturizer first.
Bare Minerals Lemon Zinger Eye Shadow
Brush over entire lid to brow bone to open up eyes.
Lancome Hypnose Drama
Instant Full Body Volume Mascara
Tuesday, November 30, 2010
I am a woman who has had breast cancer twice. When I got my E-Ticket to Cancerland the second time, my oncologist tested my Vitamin D blood level. I was severely deficient. He told me that most women who are diagnosed with breast cancer are. So we supplemented with a mega-dose once a week for a month and got it up a few points. Not enough, but we were headed in the right direction. At the same time he started me on Femara, a drug that is used to help women who have breast cancer that responds to estrogen, stay cancer-free. By inhibiting estrogen in the body, the buffet is closed to any hungry, opportunistic lurking cancer cells. Femara and drugs like it are saving women's lives. But it comes with a cost. Many women, one out of three to be exact, get horrible side effects from these drugs which include body aches, weight gain, and a general sense of misery. Add that to the lingering side effects of chemotherapy and it is hard to feel good again.
I believe there is a notation in my medical chart somewhere that reads: "Warning, this chick gets every side effect listed and even ones that aren't listed. She's even allergic to Benadryl." Now I ask you, who the heck is allergic to Benadryl??? Me.
I was ready for the onslaught of misery after breast cancer. I knew that little yellow pill that would keep the cancer away was going to do me in. It had to. Guess what? It didn't. I felt fine. No, better than fine. All the lingering chemo side effects went away, too. Was I finally catching a break? No. My vitamin D blood levels were above 50. Other studies have found that high blood values of D not only prevent breast cancer recurrence, but help prevent side effects from hormonal treatments for breast cancer. It also helps with body aches, mood swings and weight gain. I was the poster child for this theory.
I am not a doctor. I will not give you medical advice. But I will tell you this: the study I am attaching below is not going to effect my D taking routine. Because I know what it does for me. And I also know in a few months another study will come out contradicting it. If you want to be safe, don't take more than 2,000 ius a day. Get your D-level checked. If you are deficient, get it up there. Your body will thank you.
So with that preamble, please enjoy the latest new study on the Sunshine Vitamin :)
Report: A bit more vitamin D is good, not too much
November 30, 2010 by THE ASSOCIATED PRESSWASHINGTON (AP) — Got milk? You may need a couple cups more than today’s food labels say to get enough vitamin D for strong bones. But don’t go overboard: Long-awaited new dietary guidelines say there’s no proof that megadoses prevent cancer or other ailments — sure to frustrate backers of the so-called sunshine vitamin.
The decision by the prestigious Institute of Medicine, the health arm of the National Academy of Sciences, could put some brakes on the nation’s vitamin D craze, warning that super-high levels could be risky.
“More is not necessarily better,” cautioned Dr. Joann Manson of Harvard Medical School, who co-authored the Institute of Medicine’s report being released Tuesday.
That’s a bit higher than the target of 400 IUs set by today’s government-mandated food labels, and higher than 1997 recommendations by the Institute of Medicine that ranged from 200 to 600 IUs, depending on age.
But it’s far below the 2,000 IUs a day that some scientists recommend, pointing to studies that suggest people with low levels of vitamin D are at increased risk of certain cancers or heart disease.
“This is a stunning disappointment,” said Dr. Cedric Garland of the University of California, San Diego, who wasn’t part of the institute’s study and says the risk of colon cancer in particular could be slashed if people consumed enough vitamin D.
“Have they gone far enough? In my opinion probably not, but it’s a step in the right direction,” added prominent vitamin D researcher Dr. Michael Holick of Boston University Medical Center, who said the new levels draw needed attention to the vitamin D debate and encourage more food fortification.
Vitamin D and calcium go hand in hand, and you need a lifetime of both to build and maintain strong bones. But the two-year study by the Institute of Medicine’s panel of experts concluded research into vitamin’s D possible roles in other diseases is conflicting. Some studies show no effect, or even signs of harm.
A National Cancer Institute study last summer was the latest to report no cancer protection from vitamin D and the possibility of an increased risk of pancreatic cancer in people with the very highest D levels. Super-high doses — above 10,000 IUs a day — are known to cause kidney damage, and Tuesday’s report sets 4,000 IUs as an upper daily limit — but not the amount people should strive for.
And Manson pointed to history’s cautionary tales: A list of other supplements — vitamins C and E and beta carotene — plus menopause hormone pills that once were believed to prevent cancer or heart disease didn’t pan out, and sometimes caused harm, when put to rigorous testing.
Stay tuned: To help settle the issue, Manson is heading a government-funded study that’s recruiting 20,000 healthy older Americans to test whether taking 2,000 IUs of vitamin D really will lower their risk for heart disease, a stroke or certain cancers.
In the meantime, it’s hard to consume 600 IUs of vitamin D from food alone. A cup of D-fortified milk or orange juice has about 100 IUs. The best sources may be fatty fish — some servings of salmon can provide about a day’s supply. Other good sources are D-fortified cereals.
But here’s the report’s big surprise: While some people truly are seriously deficient in vitamin D, the average American in fact already has enough circulating in his or her blood — because we also make vitamin D from sun exposure, and because many people already take multivitamins or other D-containing dietary supplements.
Wait a minute: Headlines in recent years have insisted the opposite, that a majority of people don’t get enough vitamin D, especially during the winter. What explains the contradiction?
Most testing laboratories are using a too-high cutoff for those blood levels, said report co-author Dr. Clifford Rosen of the Maine Medical Center. The report says at least 20 nanograms is adequate for bone health, while many labs instead list people as low if their blood levels are below 30 ng. Serious vitamin D deficiencies are diagnosed when levels dip well below 20, something that hasn’t changed.
Rosen called the state of vitamin D testing “the wild, wild West,” and said he hoped that “with this report, we can at least temper people’s enthusiasm for just taking tons of supplements.”
As for calcium, the report recommended already accepted levels to go along with your daily D
— about 1,000 milligrams of calcium a day for most adults, 700 to 1,000 mg for young children, and 1,300 mg for teenagers and menopausal women. Too much can cause kidney stones; the report said that risk increases once people pass 2,000 mg a day.
It’s true that most studies link poor health to vitamin D levels that are below 20 ng, said preventive cardiologist Dr. Erin Michos, a Johns Hopkins University School of Medicine professor who wasn’t part of the study.
But, “I’m not sure I’m going to dramatically change my practice,” said Michos, who pushes her patients to boost their levels until they’re between 30 and 50 ng.
Read about the latest news from No Surrender on our Newsletter HERE.
Sunday, November 21, 2010
To Order your Gifts go here...
You will be SO GLAD you did!!!!
Wednesday, October 20, 2010
Sunday, October 17, 2010
Platinum is described as one of the strongest metals on earth. It is called "dense, ductile, malleable, precious and transitional." Let's take a look at those words:
Dense - which is intense and extreme
Ductile - which is able to undergo change of form without breaking
Malleable - which is adaptable
Precious - which is highly esteemed for some rare quality, beloved and dear
Transitional - to change from one state or position to another seamlessly.
What do you think? You- who have heard the words "you have breast cancer" and gone on to fight it, survive it and live the best life after it - do you feel like a flimsy, piece of synthetic fluff? Or are you intense, adaptable, of rare quality, able to undergo change without breaking?
I have had breast cancer twice. I don't do pink. I'm platinum, baby. Pure, shining, brilliant and strong as hell.
Join me in making PLATINUM the symbol of breast cancer- if we must have a symbol at all.
Saturday, October 16, 2010
There were old friends and family, newly diagnosed women and veterans sharing a few moments together. We talked, laughed and read a little. It was great fun.
Thank you to the Book Revue for their hospitality and to everyone who came out last night.
Monday, October 11, 2010
There were posters of pictures and biographies of the women who were the stars of the show: The Warrior Angels Survivor Models. They mingled among the guests before they disappeared upstairs to change into their high fashion dresses provided by the Ooh La Shoppe of Locust Valley. Delicious hot hors d'oeuvres, provided by Elegant Affairs Caterers, were passed by members of the Manhasset High School Senior class. Each had volunteered their time to help the Foundation. Two, wonderful people, Rhea Davis and Tom Jones, volunteered their time to tend the busy bars. The breakfast room had been transformed into a book signing nook, where copies of Intimacy After Breast Cancer were being offered to the guests.
Guests came from all over the area, included New York City, New Jersey, Connecticut and even Canada.
At 8:30 the attention turned to the runway. The Warrior Angel fashion show was about to begin. Each model was introduced as she walked out. They looked stunning in their dresses. Their hair and makeup had been provided by the world famous Nubest Salon. There were cheers and tears as the power of these women overcoming breast cancer swept over the crowd. Some models were new survivors, some had advanced disease, all were magnificent. The finale model was the most hopeful of all. She had been diagnosed at a young age and because of the rigors of chemotherapy and the effect it has on a woman's ability to have children, she had her eggs frozen to have a child after treatment, however she was diagnosed a second time and it was not possible for her to sustain a pregnancy. So her sister carried her baby for her. He was born in May and was held in his mother's arms as she walked the runway looking radiant and beautiful.
The night proved what breast cancer survivors already know, we are strong, beautiful, victors who have exciting lives yet to be lived.
All proceeds of the event went to the No Surrender Breast Cancer Foundation's Before Forty Initiative. You can read about our program HERE
Saturday, September 25, 2010
When/how/if you tell him about your cancer history really cannot be decided before you even go out on a date with the man. Get to know him. Decide first if you want to share that part of your life with him. Remember, cancer was a small part of a lifetime of experiences you have had. There is no more of a rush to tell him about your breast cancer than there is for him to tell you about his appendicitis in 1998. Relax and breathe on a date. And pay attention. Is this a man you want to share intimate details with? Is this a man who will cherish you and honor what you have been through? Don't be blinded by the light of the full moon in your eyes... I know it may have been a while since you were on a date, but please, remember how it works.
Sometimes, after cancer treatments, we forget the harsh reality of the dating world... and men.
If you are waiting for your knight in shining armor, you better stock up on Tarn-X because by the time you find him, he's gonna be rusty. If he is worth polishing, go for it. If he makes you feel less than the fabulous woman you are, move on. Do not, I repeat, do not let anyone diminish you. You are a magnificent warrior who beat back the Cancer Beast. You deserve only the very best.
Friday, September 24, 2010
|The Before Forty Initiative|
Think back. After the shock of hearing your diagnosis calmed down a bit, the what-ifs crept in. What if I have to do chemo? What if I lose my hair? What if I lose my breasts?
The side effects of the first two, chemo and hair loss, are temporary. Your body recovers and your hair grows back. It really does. But losing your breasts? That one is permanent. How do you wrap your mind around such a thing? It is a part of you that reflects sensuality, motherhood and your sense of self. While you are not your breasts, not by a long shot, it still is hard to contemplate losing them.
You go online and as one friend told me, the photos look like something out of "Silence of the Lambs." Until now. A company finally gets it. They created a smart, sensitive, informative and hopeful website that answers all your questions, has video diaries from real patients and doctors to take you through each step of all types of reconstruction. They put this site together for one, simple reason: It Matters. Breast reconstruction and how it can change your life and your self esteem after so much loss, is something that has come a long way. Doctors are able to make you look absolutely beautiful.
When Pandora's box was opened and fear, anxiety, anger and despair was set loose, one other thing was released as well: hope. The Pandora's box of your cancer diagnosis opened with the same items inside your soul. Look for the hope. The chemo works. Your hair comes back. And, if you have to get a mastectomy or two, you CAN have beautiful breasts again.
I highly recommend you take a look at breastreconstructionmatters.com because I know from personal experience, it really does matter.
Take a closer look at that photo. That is breast reconstruction. Not bad, eh?
|BreastReconstructionMatters Supports the Before Forty Initiative|
This is precisely why I wrote my book, Intimacy After Breast Cancer, Dealing with Your Body, Relationships & Sex. I have had breast cancer twice... chemotherapy twice... surgery, radiation, reconstruction, and everything else they could throw at me... hear this: sexual dysfunction from breast cancer treatments does not have to be permanent.
You can return to a fulfilling sex life. You can get your body back. You can feel sexy again. Do not let anyone tell you (read: doctors) that you have to accept a sexless life as part of the "new normal." Hell no, baby. You didn't fight so hard to save your life to live half a life! I have had everything done to me, I am on Femara. I get Lupron once a month. Trust me on this one. It is not over. And I show you how to get there.
This may seem like a shameless plug for the book, but anyone who knows me, knows that I get really pissed off when "they" tell us that we have to accept less than a wonderful life because we had breast cancer.
As Pink Hell Month descends upon us and "they" depict us as the orphans of the storm, pull on those hot jeans, kick ass boots, show off your recon and get out there. In fact, come to our party in New York and watch our fashion show with the Warrior Angel Survivor Models. They are all thriving women who just happened to have had or have breast cancer and are showing the world how beautiful they are.
Get up and get out there, girl. Your life is waiting!!!
Monday, September 6, 2010
Maybe it was the challenge. Maybe I am just not the type of person who you can say, "you can't do this" to. And when it comes to life and death, well, telling me that I have a 20 percent chance of surviving five years because I have the "bad" breast cancer, the one that doctors just can't beat, is just the motivation I needed.
He turned to me, handed me a booklet with stats in it, and said, "Let me tell you about your cancer." And so it began. Just like those jigsaw puzzles, I got out my manicure scissors and cut my pathology report until if fit me, not the other way around. And like that Bach Sonata, I learned everything I needed to know to fight my cancer... and then some. I was not accepting the death sentence I was being given because my cancer was "triple negative." I found research studies in obscure labs and read up on what they were doing and then backed that up with the science behind the theory.
In the beginning I thought my life was over. Because they told me it was. Then the shock wore off and the real me took over. I wrote two books. Started a Foundation that fights for every woman after me who heard those same words I did. What do I tell them? FIGHT. LEARN. LIVE.
Fire your doctor, if you have to, and find one who is shooting for nothing short of a cure. Then do everything he tells you to.
Cancer even made a reappearance 6 years later. I beat that back with a stick until it was dead. In all, I have done over 8 different types of chemo, radiation, surgery after surgery and still fight every day by eating the right things and exercising. I have actually had people say, that I "didn't have cancer, how could I have? I look so, um, normal" How utterly lovely! Thank you!
That's the point. I had it. I have not become it. I am not the world's designated cancer patient. I am a sister, daughter, friend and lover who had a disease once.
I was diagnosed a few days before the World Trade Center was attacked. Those buildings, in all this time, have still not been rebuilt. But I have.
I am lucky as hell. And because of this luck, and the grace that has been inexplicably given to me, my life has changed. I don't accept this gift lightly. I try to pay it back every day by helping as many women as I can. Even if just the fact of me being a nine year survivor helps one woman through the night, it is a gift to me - because I am alive to give it to her.
I still don't take the word "no" easily. I still fight for justice. I still don't play by all the rules, ( driving myself to all my appointments, chemos and even some surgeries; leaving the hospital less than 12 hours after my bilateral mastectomy and reconstruction because of my extreme dislike of hospital ick... you know, those rules.)
When I tell a newly diagnosed woman, "You can do this..." I REALLY MEAN IT.
September 6th. Nine years. My new birthday. Keeping with my tradition I do every year, I will send up 10 balloons from my beach. One for each year of survival, and one for my dearest sisters who did not make it. That is another quirk of mine. As long as I am alive, no one will ever be forgotten.
To the US Task Force who announced a year ago that women do not need baseline screening until the age of 50 and then only every other year: This nine year breast cancer survivor is here because I was screened at age 35. And, even though people think we may be small potatoes now, my Foundation's Before Forty Initiative is going to save the lives of young women across the world by the time we are done building it. We will crush your screening guideline death sentence. Oh yes, I am aware - people have told me I could never go against the US Task Force or the ACS, and all the other organizations that tell women to wait until the age of forty.
Thanks for the challenge guys. I just happen to love proving people wrong.
To everyone my sisters in this fight, thank you. You know what you mean to me. I love you. And let the party start on October 7th when we celebrate Survival- not a disease.
What tomorrow will bring? I have no idea. But right now, I'm alright.
Friday, September 3, 2010
Wednesday, August 25, 2010
She faced down Triple Negative Breast Cancer with a battle plan where defeat was never an option. She stayed focused, positive, determined and lovely. She shared her fight with America and showed thousands of women who have heard they have the "bad" breast cancer that they can absolutely fight and win, but thrive when all the treatments are over.
A couple of months ago she told me that she wouldn't return to work until September. Jennifer, it is August 25th. I had presumed you would ease back into your job at FOX news. I forgot this was Jennifer. Not only did she return to her post early- but her first assignment was Afghanistan, interviewing General Patraeus. There she was, up there on the TV screen, back doing what she loves. She didn't miss a beat. And she looked stunning. (Oh, how I have missed seeing her earrings!)
Jennifer, you are my hero. You have given so much hope to so many women across the country who have seen you. Imagine the newly diagnosed woman who just heard yesterday that she has breast cancer, thinking her life is over, as we all do in those first, terrifying days. She turns on the television. And there you are. Chemo: done. Radiation: completed. Surgery: finished. A wonderful life: going strong.
Thank you for sharing your victory with us, Jennifer. If there ever was an embodiment of No Surrender, it is YOU.
Tuesday, August 24, 2010
Turning Cancer, Other Diseases, Into Causes
by ALAN GREENBLATT /NPR
August 24, 2010
The new Showtime series about cancer has an old-fashioned, euphemistic title: The Big C. It's gotten mixed reviews in part because critics find it implausible that the central character, played by Laura Linney, would not disclose her illness to friends and relatives.
"It doesn't seem believable in Cathy's case — she just seems too smart and articulate to deliberately withhold something like this," Hank Stuever wrote in The Washington Post. Today, it's expected that people suffering from a disease will make that fact known. Breast cancer, in particular, seems to be thoroughly destigmatized. Patients and loved ones wear pink ribbons, blog about their experiences and participate in races and walks to raise money for research.
Not every disease has become a cause. But it has become common for people to promote awareness of their illnesses and conditions by sporting bumper stickers and wearing T-shirts, wristbands and tattoos, whether they're concerned with Alzheimer's, autism, pregnancy loss or other subjects.
These various emblems are only the most visible symbols of a whole culture of patient information that today gets shared through websites and support groups. "It's a way of making it visible," says Susan E. Bell, a medical sociologist at Bowdoin College, "giving people some way of trying to destigmatize their conditions and to signal and make connections with people who might have or know someone with similar conditions."
No Longer A Dirty Word
This was not always the case. Before women such as first lady Betty Ford and NBC News correspondent Betty Rollin went public about their bouts with breast cancer during the 1970s, cancer was rarely discussed or "shared."
"Cancer used to be a dirty word," says Linda Layne, an anthropologist at Rensselaer Polytechnic Institute. In decades past, doctors "didn't even tell patients about it sometimes. It was withheld."
Several trends converged to make public sharing of patient information common, including the women's health movement, the rise of information technology and a shift in the medical culture itself away from a purely hierarchical system in which doctors were always assumed to know best. Patients, armed perhaps only with what they've read on the Web, now can be counted on to ask questions about virtually any condition.
"There's a sensibility in our culture that you have to meet a diagnosis with a whole set of questions that we didn't used to think we had permission to ask," says Victoria Pitts-Taylor, director of the Center for the Study of Women and Society at the City University of New York.
The Influence Of AIDS A lot of illness-awareness promotion, though, stems from the way AIDS patients responded to the rise of that disease. AIDS activists were determined to see the syndrome receive attention and research dollars. It became synonymous for a time with red ribbons and the slogan "Silence = Death."
That approach, Layne suggests, may have something to do with the fact that the AIDS epidemic came hard on the heels of the gay-rights movement of the 1970s, which was largely about gay people proclaiming that their identity was neither shameful nor something to keep hidden. The tropes developed with AIDS — clothing accessories such as ribbons, displays of commemorative quilts, marches on Washington — have all since been adopted by groups concerned with other conditions.
"Think Before You Pink"
Not everyone is enamored with this model for open display of disease awareness. Many patients resist identifying publicly with their diseases because they do not wish to be defined by them.
In her 2009 book Bright-Sided, Barbara Ehrenreich complained about the "pink sticky sentimentality" of pink ribbons and breast cancer teddy bears. Confronting the disease herself, she felt isolated by the "universally upbeat tone" of her fellow sufferers who she thought had been distracted from more important matters such as pain and treatment options.
Studies by business professors at Duke and Michigan have found that "cause-related marketing" often profits the companies who participate in disease awareness campaigns as much or more than the charities they are supporting.
"It's now very much transformed into a corporate venture and a merchandising opportunity," says Angela Wall, spokeswoman for Breast Cancer Action, an advocacy group based in San Francisco. "People are buying stuff that's pink, thinking it's going to a good cause, but because there's no copyright on the pink ribbon it can be slapped onto any product."
Breast Cancer Action, with its "Think Before You Pink" campaigns, calls out companies it argues are supporting charities even as their products are contributing to incidence of the disease. Such efforts, Wall suggests, represent hypocritical and misleading attempts by such companies to clean up their image.
"Enough awareness. More action," she says.
Ameliorating Real Pain
The whole panoply of patient awareness efforts — the T-shirts and the fundraisers and the homemade videos posted on the Internet — are now a hybridized blur between grass-roots efforts led by patients and promotional efforts instigated by industry groups and, sometimes, researchers themselves.
That doesn't mean patients won't find them helpful. Patients and caregivers often come to recognize each other as their own best sources of information about disease and treatment, says Pitts-Taylor, the CUNY sociologist.
"People who have an illness, or are caring for somebody, are creating these communities, what we used to call a subculture," she says. "They have an awful lot in common. Not just the biological fact of illness, but also the social experience of what that means and how it translates into everyday life."
Making plain the very fact of disease is a way of saying, "I'm not ashamed, I'm proud," says Layne, the anthropologist at Rensselaer. That represents a huge change in attitude and approach from a generation ago, she says, when people who had cancer or women who suffered miscarriages might "feel like freaks, like the only people on Earth this happened to."
"There's no way that losing a baby isn't going to be horrible," Layne continues. "It's at least better that you don't have to be ashamed of it. That's one aspect to thehorribleness of the experience that's really been ameliorated."
Monday, August 16, 2010
✓African American Women are at great risk for developing Triple Negative Breast Cancer at a YOUNGER AGE than Caucasian women.
✓The EARLIER you find your TNBC the greater your chances are of beating it.
✓DO NOT wait until the age of 40 to get your baseline.
Please help us in our mission to save the lives of women who don't even know they have breast cancer, so we can help them live the longest, best lives possible. We need your financial support now. And we need boots on the ground to help us distribute our information pamphlets.
Yes, you can buy a pink stapler... and nothing will come of it. OR you can donate to the NSBCF and save someone's life.
Study links African ancestry to aggressive breast cancer
Triple negative breast cancer is negative for three markers used to determine treatment: the estrogen receptor, the progesterone receptor and HER-2/neu. Recent advances in breast cancer treatments target each of the receptors, but targeting all three is a major problem, said Dr. Lisa A. Newman, director of the Breast Care Center at the University of Michigan Comprehensive Cancer Center.
“Outcome disparities are therefore likely to increase, because fewer African-American women are candidates for these newer treatments,” she said.
These results and results from prior studies indicate a genetic link for the form of breast cancer a woman might develop.
Prior studies have shown that while African-American women are less likely than white women to develop breast cancer, those who are diagnosed are usually younger and more likely to die from the disease. Other studies have shown a hereditary breast cancer risk associated with racial-ethnic identity — most commonly among Ashkenazi Jewish women.
Researchers looked at African-American women and white women diagnosed with breast cancer at the Henry Ford Health System in Detroit. Researchers also looked at African women diagnosed at the Komfo Anokye Teaching Hospital in Ghana.
Ghanaian women were diagnosed at a younger age than American women, with larger tumors, had more advanced cancer and were more likely to have the triple negative test results.
Researchers said the recent findings may help science find women predisposed to more aggressive and deadly cancers.
Saturday, August 14, 2010
|Sands Point Light House, c. 1890|
The Long Island of my childhood has changed. Growing up in Sands Point, where there were no manicured curbs, the lawns ran down to the edge of the beach road that led to our house. The remains of sea walls still protected the beach where the Hearst Castle once stood. The house Fitzgerald based Gatsby’s house on. Only the gatehouse, clock tower and walled garden stands today. On the other end of the beach stood the house he based Daisy’s on. A Stanford White, gleaming white mansion that is now about to be torn down and its rolling lawns turned into a subdivision.
My first school was Buckley Country Day and it was at the end of a long driveway off Shelter Rock Road. Our school bus passed ponds and deep woods and then opened to the clearing where the estate house that had become our school stood. Now, the children who travel to Buckley pass a condominium complex, the woods are gone and only one pond is left, reflecting the manor house on its surface.
My high school was in Locust Valley. The Friend’s Meeting House still stands on its hill, where the daffodils fulfill Wordworth’s poem every spring. It is a new Meeting House, but it was rebuilt after a tragic fire with sensitivity to what was. Salvaged nails and window panes were reused wherever possible.
In our senior year, we used to leave campus and have lunch in the abandoned playhouses of the closed estates which silently awaited their fates of the crashing of wrecking balls and earth movers. Sold for taxes, subdivided for plastic, miniature facsimiles of what they once were, creating a new world of McMansions.
Some estates were saved and converted to golf courses or art museums. There, the land is open, and one can still breathe. There were many farms when we were growing up. Saturday mornings would not have been complete without a trip to Youngs Farm or Filaski Farm stand. Filaski is gone now. And we almost lost Youngs Farm this winter. But thanks to the work of the North Shore Land Alliance, it was saved. Sitting in the courthouse waiting to hear the verdict was an anxious moment. Driving home past the fields, knowing it had been spared, you could almost feel the farm let out a collective sigh of relief.
It is not just the aesthetic that is being protected. The beauty speaks for itself and the legacy for our children, not withstanding, we need our open spaces for our very lives.
Long Island’s water comes from a deep aquifer. Massive development since the post war years, has affected this water supply. Whether the scientists will officially admit it or not, there is a direct link to our drinking water and our health. The breast cancer rate on Long Island is out of proportion with the rest of the country. What do we all have in common? What one factor do we all share? We all grew up drinking the same water. The more land we “develop” and the more open spaces we destroy, the aquifer will be tainted. What will the future of the children’s health hold for them if we let this happen?
Currently, there is a golf course that stands on a large area directly over the aquifer, that could not be saved. Plastic imitations of classic homes will carve up the land and the waste from each will seep deep into the earth. We will be drinking that water. So will our children.
If trying to keep the North Shore open and beautiful and saving what precious little is left of its original natural wonder is not enough to get you involved, then think of the health effects of congested, over-development.
I have had breast cancer twice. I lost two childhood friends to cancer. My sister has had cancer. Three people on the street where I grew up had cancer. As the founder of the No Surrender Breast Cancer Foundation, I see the numbers growing, not decreasing. Is it just a mere coincidence that the rates of cancer have risen along with the development of our Island?
To help save the open spaces of the North Shore of Long Island visit the Northshorelandalliance.org and if you would like to help us in our fight against breast cancer please go to our site, nosurrenderbreastcancerfoundation.org. To take a glimpse back in time, visit oldlongisland.org.
"So we beat on, boats against the current, borne back ceaselessly into the past." F. Scott Fitzgerald
|Mill Neck, February 15, 2010|
Tuesday, August 10, 2010
|Photo ©Copyright No Surrender Breast Cancer Foundation|
Ferne didn't ask for anything from anyone. She gave and gave to all who knew her. I have never known anyone like her and will never meet another angel on this earth like she was. I treasure the friendship I had with her and work every day to keep her memory and dream alive.
What does a woman who is dying of breast cancer look like? She can look like you or me. Or, she can be the cliche that Ashley Kirilow attempted to portray in her scam to "get back at her parents for a dysfunctional childhood." Say what? Yes. Apparently, a spoiled, attention-seeking, twisted freak decided to shave her head and eyebrows and start a Facebook page to raise money to help her in her fight as she died of breast cancer. She raised over $20,000 and got a free trip to Disney World. The only problem was she doesn't have cancer, never did, and she lied to everyone she knew.
She raised $20,000 on Facebook?
I could go on and let you know what I think of this person. But, instead, I will let this list speak for itself. A list of the sisters we have lost in the last couple of years. May they rest in peace and know that they will never be forgotten. Miss Kirilow, however, will be.
CANADIAN WOMAN FAKES CANCER TO RAISE MONEY FOR HERSELF
The Digital Journal
A 23-year old Canadian woman is under arrest arrest for impersonating a dying cancer patient, and bilking $20K in donations from people who bought the charade. Apparently, she wasn't that good of an actress.
Twenty-three year old Ashley Kirilow who went to extreme measures to fake having cancer, including shaving her head, starving herself and plucking her eyebrows, was arrested on Friday. The New York Daily News reports that Kirilow, of Burlington, Ontario allegedly bilked family, friends and strangers out of $20,000 for her phony charity, which she said would fund cancer research. Kirilow turned herself in on Thursday and now could face up to two years behind bars. She told the Toronto Star that she faked the illness to get back at her family for her dysfunctional childhood, which included her parents battling over her custody.
"I took it as an opportunity to make my family feel bad for how I was treated."For over a year, she convinced volunteers to arrange benefits for her and even persuaded a cancer-awareness group to send her to Disney World. She even had her knuckles tattooed with the words "LOVE LIFE" and "WONT QUIT." The lie began in late 2008 when Ashley was treated for a benign lump in one of her breasts. After that procedure, she began telling people she not only had breast cancer, but liver cancer, stomach cancer and ovarian cancer, all at various stages and in different combinations. She told people she only had a few months to live. Kirilow said she'd like to pay back those she had taken advantage of. But as for the scammed cash, she said she'd already spent it all.
"I made a really big mistake and it's no ones fault but mine."Everyone who gave to her did it in cash, and nobody asked for a receipt. Her charity was never registered and consisted of nothing more than a Facebook page. Over the course of a year, Ashley persuaded a legitimate Toronto-based cancer-awareness organization, led by Newmarket skateboarder Rob Dyer, to fly her to Disney World. Their response to the turn of events,
“Skate4Cancer’s involvement with Ms. Kirilow was based solely on fulfilling what the organization believed to be a legitimate final wish from a terminally ill individual.”Ashley's friends and followers say they are shocked, betrayed and furious. But her parents are not surprised, saying the latest allegations follow a behaviour of hers since she was a child. Ashley is manipulative, craves fame, and uses people to get what she wants. Her father, Mike Kirilow, a self-employed home renovator says
“She loved playing the victim. Because it gave her control over people.”