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    As October approaches, we will see a parade of pink ribbons, gathering momentum throughout the month. Lots of inspiring stories, donation campaigns, pink labels on the things you buy all the time.

    And lots of businesses will make lots of money, courting your business for “the cause” and donating “a percentage” to the breast cancer cause.

    I hate pink ribbons! I hate them and I wear them. When I was in chemotherapy they made me feel supported. Now I see them on cereal boxes, cat litter, you name it. Blech.

    When I was diagnosed in 2007, I was under the impression that breast cancer was a disease that had been mostly conquered. I had heard all about early detection, better treatments, etc. etc. etc.

    What? Stage III? Inflammatory Breast Cancer (survival rate: 20-40%) Really?

    Do you know what really happens when a woman is diagnosed with breast cancer?

    Regardless of what stage her disease is, she has a one in three chance of it coming back as metastatic disease.

    Breast Cancer kills, folks. It kills 150,000 people this year.

    My friend Kathleen has posted about how the media, especially women’s magazines, support our complacency with erroneous drivel disguised as facts.

    Why is this pinkwashing going on?

    Well, all the folks who make money with your purchases would like us to believe we are winning the battle against breast cancer, so we can feel like we are doing something. If we feel that we can do something (because we are good citizens of course) easily by buying this or that pinkwashed product, then everybody from toilet paper manufacturers to water providers can cash in on increased sales from which a tiny percentage they make their token donation.

    The Pink Crusade has a very dark underbelly. Those of us who have been through the hell of what real breast cancer is steel ourselves for the sweetness and light of Breast Cancer Awareness Month that is a figment of the collective imagination.

    The battle looks very much as it has for decades.

    We’ve made strides. But we have won skirmishes, not the battle.

    Too many women and men still die. Too many are now living with metastatic disease, subjecting themselves to treatments that make them sick to get some more time. Who among us wants to leave before we are ready?

    What would you do if you were running out of time and you weren’t done yet? What drugs wouldn’t you try?

    If you were sick with chemotherapy or compromising your quality of life for more time, or losing the use of your arms, back, or brain to cancer that just keeps marching on, what the hell would you be saying about the Pink drive for dollars, and the commercialism of breast cancer?

    So what can we do?

    1. Research before you buy. Don’t just buy because there’s a pink ribbon on the box. Bookmark Think Before You Pink and take action.

    2. Join Army of Women. Be a part of the search for the CURE, not more mammograms or salaries for CEO’s of nonprofits. Those are important, but the cure is the most important. I am thankful for mammograms but my cancer did not show up on a mammogram, and I am not alone (that’s not what you heard, is it?). I will be ecstatic when I know my daughter can grow up without fear.

    3. Get behind Deadline 2020.

    4. Donate directly to legitimate breast cancer charities. Fund raise if you like, but make sure that you know exactly where the proceeds are going.

    I would like to rename Breast Cancer Awareness Month to Face Reality Month. Anybody with me?

    I just added another post on this topic at Everyday Health. Let’s take back October!

    As I prepare to go to Washington D.C. for my first conference, I find myself noodling around the internet again, just learning. There are a couple of women whose blogs I follow, and one of them led me to this.
    I have ranted before about how angry it makes me when a sister falls, or when I discover her story only after she has left this earth. This is a stirring post by a woman who is fighting, a woman I’ve never met, who has opened my eyes about the “pink underbelly” of cancer research and fundraising, beyond the walks and the wristbands. It’s a vitally important perspective to take to D.C. with me.

    Deadline 2020 is for the CURE. That means prevention and CURE, the end of metastatic disease as well as early stage breast cancer.

    Onward!

    And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I was diagnosed, I had been a full time professional Massage Therapist for nearly 20 years. I knew all about complementary therapies, but I had been neglecting myself, badly. I wasn’t just a wounded healer. I had been limping for a long time. I had just emerged from an awful divorce, huge work stress (the hospital where I worked was downsizing, and the pressure was on!), and my children were suffering. They were 7 and 9. I knew something had to give, but I didn’t really know how to get out of the quicksand I was in.

    When I got the diagnosis, I knew I had to fight and fight hard. I decided that I had an opportunity to heal my whole life, and that embracing that task would give me the best chance to survive. I sought healing of body, mind and spirit, and most importantly to mend the rifts between them. The word “congruence” was my operative word, and still is. So, my take on complementary therapies is really an approach rather than just a list of modalities. having said that, I pretty much used them all!

    My practices for myself:
    1. Say “yes” when anyone offered help. Accept with gratitude. Believe that I deserved the help and that giving it was a blessing to the ones who offered.
    2. Put myself first, for the first time ever in my life, no matter who it upset. I was fighting for my life, and I knew it. A total stranger told me to do this, and I believed her.
    3. Actively and deliberately sought my own happiness. It took awhile to figure out what that looked like.
    4. Made a decision to stop beating myself up, period. Nothing was gained by my perfectionism, and I was beating myself down. Now I question my tendency to self blame, and if I find something that needs to change, I take note and move on.

    I had to rely on #1 a lot, because I was not in a financial position to pay for everything I received. Still, I accepted it, and it all helped, more than the sum of it’s parts. Here’s my list:

    1. Massage Therapy. I received a massage once a week while I was receiving chemotherapy. My colleagues at the hospital did this for me voluntarily, on their own time. I will always be deeply grateful for this.

    2. Healing Touch. I received this through a Stanford University study called Healing Partners. I received one session per week for six months.

    3. Acupuncture. My mom offered to pay for this because she knew it would help. I was a struggling single mom when I went on this journey so I did not have the funds to do this. I received acupuncture once every two weeks.

    4. Guided Imagery. I believe this had a huge impact on my treatment. I used it to keep my blood cell counts up, to maximize the effectiveness of my treatments, and for healing after the treatments were over. I’ve already written a short article about that on the pages for Complementary Therapies. Excellent Guided Imagery CD’s and MP3 downloads are available from Health Journeys.

    5. Support: I went to an Art and Imagery support group. This was a combination of Guided Imagery and using art therapeutically. It was very helpful. That program closed at the hospital and I really miss it. I also found my Caringbridge site to be a huge source of support.

    6. Counseling. Fortunately for me, this was available through California Cancer Care where I received my treatments.

    7. Laughter! I didn’t do “laughter therapy” (whatever that is…I haven’t tried Laughter Yoga but I have a friend who’s into it and loves it) but at the time I was diagnosed I had been attending a comedy improv class every week, and I made sure to continue. I timed my chemotherapy so I would be up for my class, and I didn’t miss a single one! Even after my surgery, I couldn’t play, but I could watch. I’m convinced that laughing my head off every week was very good for me.

    8. Exercise is very important! I took advantage of the “Living Strong, Living Well” program at my local YMCA and did weights, cardiovascular exercise, and whatever else seemed like fun. I also did yoga at home, and some chi gong. I had a couple of videos and they worked well for me. I have a chi gong video that offers a 10 minute sequence for cleansing, called simply “chi gong for cleansing”. I am convinced that my complete recovery from surgery with my range of motion intact is because I did yoga.

    9. Nutrition: My doctor told me, “Eat what looks good to you”. I wanted to be a martinet about what I ate, but I had decided to accept all help so I indulged in comfort food when it was offered. What I did do is create a smoothie that covered all the bases, and I had that every day during chemotherapy. Now I’m a bit more careful, but not super strict. I find the information on “Food for Breast Cancer” useful and I read the research they publish.

    10. Cultivate hope, actively. I read everything I could get my hands on about recovering. The book “Remarkable Recovery” was my constant companion. I read the stories over and over, especially if I was feeling worn out by it all. The gist of what I got from it was that beating the odds was about doing it how you do it best, and it’s different for all of us.

    11. Self expression and creativity. Everybody has her own way to do this. I found blogging, and loved it. I also got tons of support online, which was a huge help. I picked up a paint brush for the first time in 20 years or so. As I went through radiation, I was also rehearsing for a musical, again for the first time in 20 years. For you it may not be this sort of stuff, it may be something else, but whatever it is, it makes your spirit hum! If you’ve forgotten what that is, it’s time to discover it again!

    12. Prayer. Whenever anyone offered to pray for me, I said yes, by all means please do! Acknowledging that my life was worth praying for, and allowing total strangers to pray for me (I was on a ton of prayer lists) was an important act of self love. There is research that supports the effectiveness of prayer, and I believe deeply that true self love sets all kinds of positive cellular happenings in motion.

    13. Substitute “Feel Everything” for “stay positive”. I heard that stay positive stuff all the time from well meaning people. Being a Pollyanna does not help. Neither does denial. What does help is honoring what you feel, give it expression, and keep things moving. I didn’t elevate my lousy mood by pretending I didn’t have it. I blogged, “feel like crap, going to bed” and then later absorbed the messages of hope from my friends on my guestbook. I cried my way through a few infusions, and then felt better. After I cried I could make art or settle into my warm bed with some hot chocolate. Everything is allowed!

    There’s my first stab at it ladies, for my dear IBC sisters and anyone else this may help. If you have any questions about what’s here so far, or want me to elaborate some more, please send me an email at elizabethdanu@rocketmail.com. What you tell me you want is what will be in Part Two. In the meantime, I am sleuthing out links and resources.

    I hope this helps!

    Love,
    Elizabeth

    Very few of us cancer survivors would be here at all without clinical trials. Every new drug that emerges as a possible weapon in the battle for our bodies is an unknown in the beginning. Before it even gets tried on people, it has to be determined safe. How do we find out the answers? Human beings. Pioneers, risk takers, people for whom the options have become fewer and fewer.

    One of the first women to take herceptin was at death’s door. She was invited to be part of that study but declined, having had enough of treatment misery and thinking she had accepted her fate. She was invited again, after tests confirmed that her cancer was overexpressing the Her2 protein to a very large extent. That woman is still cancer free, alive and well in a small town in Washington State. She braved an unknown chemical, with unknown side effects or outcome, in the hope for another chance to beat cancer. Because of her, and the other women in that study, I and many other women with Her2+ cancer cell types are alive. We are perhaps 25% of breast cancers, and our prognosis used to be grim indeed. Herceptin, and the brave women who were human guinea pigs, changed all that.

    The prognosis for Inflammatory Breast Cancer is statistically still grim. However, today’s statistics don’t include a huge number of us treated in recent years, after major advances have been made in treating our disease, advances that were tested before they were put into practice. My treatment protocol, with herceptin used with adjuvant chemotherapy, was approved for that use only a mere three months before I was diagnosed. I am so grateful that my doc was a trailblazer! She predicted that dose-dense chemotherapy would become standard for aggressive, locally advanced cancers, and I am seeing that come to pass.

    This is on my mind because my friend Susan begins a clinical trial today for a new combination of chemicals, in the hopes of knocking the —- out of this latest, fourth manifestation of cancer, now in her lungs. I can’t imagine the fear and the hope she must be experiencing today.

    I remember my first chemotherapy infusion. I was scared to death. I didn’t know what these chemicals would do to me, or even if they would work. By the fourth infusion I was not afraid, because I knew about Adriamycin and Cytoxan. What they did was nasty, but no surprises.

    The first Taxol infusion was scarier, because of all the disclaimers and warnings I had to sign! When I didn’t turn green or blow up that was a relief. Feeling like I’d been hit by a truck and then flattened by it was nasty, but I knew that it would ease off over time. It also helped that I could see that the mack truck I’d been hit with was knocking down my cancer.

    I also knew that trial and error had evolved these treatments to the point of the least danger for the most benefit. This was available to me because of the brave women who had risked before.

    Today, I am hoping that Susan will find the least suffering for the most benefit. I am praying that this battle will end the war and see her triumphantly resuming her life, tending to her sweet family and doing what she loves.

    And, asking once again for all who can to join the Army of Women! When we know what causes breast cancer, we can reduce the suffering on the other end.

    I just read a story about the youngest breast cancer survivor, a little three year old girl. She is now four, and already and activist!

    Enough is enough!

    We all know we are supposed to exercise. I was doing well until the weather changed and my walking buddy started having trouble with her ankle. Every day I haven’t exercised has made me anxious! I know I’m supposed to be doing it. I have a gazillion excuses…

    It’s yucky outside. I don’t feel like it. I have so much to do, I’ll do it later, no, I’m tired, it’s dark, whine whine. Thanks to my dear ol’ mom, I have no more excuses!

    Seriously, exercise is really, really important. Study after study shows the benefit of exercise, both as prevention and to reduce the risk of recurrence. It’s also good for just about everything else. I’ve been doing a lot of research on the internet lately. Body mass index and survival are inversely related. The higher the BMI, the poorer prognosis statistically. Exercise also impacts insulin resistance, a factor that is becoming recognized as a contributor to the development of cancer. I have a love/hate relationship with exercise, as I’m sure a lot of us do.

    I do great for awhile, and my body, mind and spirit hum. Then something gets me off track, and the all or nothing gal that I am not only drops the ball, I roll it down the hill behind me!

    So, this technological device is worth its weight in gold to my way of thinking. I can choose from a number of clever games that are just that, games! I’m being a kid, throwing snowballs at my family or being chased by a dog on my bicycle, and I’m getting exercise.

    Not only me, but my children as well! My son is very competitive, and the thought of mom doing better than he does is intolerable, so he is now effectively weaned from passive video games in favor of exercise.

    Something else I am noticing, which seems an obvious metaphor. My husband, who is calm to the point of being aggravating to his high-strung wife and step kids, leaves us in the dust when it comes to balance games. Now, this is my focus. Balance! I will be a penguin on an iceberg, cruise down the rapids in a bubble, dodge panda bears and shoes with my head, and any number of silly games to achieve balance first. I feel calmer at the end of the day when I’ve been doing that.

    My journey into this world of advocacy and awareness has been startling, terrifying, and exhilarating. During my entire journey through cancer treatment I really managed to not know what kind of trouble I was in. I didn’t want to see the scary parts, I just wanted to plow on ahead in warrior mode, pass the finish line and be done with it. I blogged all the way through, and then when it was all over I got depressed.

    Then, I got scared. So many of my blogosphere friends dealing with metastatic disease, so many blogs gone because another woman lost her battle. Terrifying and humbling, this. I alternate between terror and survivor’s guilt. Today where I stand is committed and awake, painful as that has been to get to. I have combed the statistics. I have pored through women’s stories. I have faced the impact of my current choices, and improved them. Life is a gift I cannot take for granted, and I need to keep on fighting for those who can’t anymore, and for those who are gone.

    What am I fighting for? Awareness, a cure, and a future without breast cancer.

    And that crazy Wii? Thanks so much Mom. I’m not facing chemicals anymore, I’m creating my future without cancer to the best of my ability, God willing, and you’re still helping.

    I never could do it without you!

    Yes, Yes, Yes!

    Contest Winner:

    Pass this along please, to women everywhere!

    Calling all night shift workers!

    Army of women has a new study that is investigating the possibility of a connection between erratic sleep and breast cancer.  300 subjects are needed.

    If you work at night, have no history of breast cancer, and want to help uncover the causes of breast cancer, please, please sign up for this study!

    You can learn more by following this link:

    http://www.armyofwomen.org/current/view?grant_id=335

    It will take an army to eradicate breast cancer.  Men can join also.  It will take an army, but I believe it can be done.  Please join us!

    You may have noticed my new icon to the right, the link to Army of Women. This organization is the brainchild of Avon and Dr. Susan Love, and it’s purpose is to end breast cancer by learning how it starts in the first place.

    This is a question researchers have been asking, but finding people to participate has been the main obstacle. To find out the answers, researchers need no less than an army!

    If you have never had breast cancer, you are needed. If your mother, sister, grandmother, or any other close relatives have had breast cancer, you are needed. If you are fighting it you are needed. If you are a survivor, you are needed!

    We are all needed. Women, men (yes, men!) survivors and everyone else, the research that will answer the question will take an army.

    If you join the Army of Women, you will be invited to participate in research, but are in no way obligated. Being part of the Army of Women means that you stay up to date on what’s happening in the research world. You can be part of it at whatever level you want to be.

    I’ve joined the Army of Women. I’ve joined it without hesitation, for my sister, my friends, my mom, so many women and men that I love. Most of all I joined for my beautiful 11 year old daughter, Felicia. I am imagining a world where she can grow up free of the fear of breast cancer.

    For more information, click on the purple Army of Women link on the right. Please join us! You are needed!

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