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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!

    Like the conscience in old cartoons, My Own Death sits on my shoulder, reminding me to pay attention and treasure my life.

    I was noodling around this evening as I often do, looking for cool juicy stuff on the internet, and my meanderings brought me to an article written by a Palliative Care nurse. She writes about the common regrets she hears from the dying. I was deeply moved by the article, because what happened to me is that I got a second chance, so every regret that she listed was a change I had the opportunity to make in my life.

    Everyone who faces life threatening illness and survives gets a second chance if they choose. I am so grateful that my second chance came while I was still young enough to have more years to enjoy my children, and to follow the passions that I had forgotten on the back burner for so many years.

    The little annoyances and aches and pains that make me afraid are the reminders of my commitment to myself. None of us knows how long we have. Am I doing what I want to be doing, what matters most to me with each day that I have?

    Susan said in her blog, “please don’t pity me. I have work to do”. I am certain that the passion she has for this work of the heart that she does will keep her alive. I feel deeply that my passions keep me well, and feeding them is a smart survival program.

    Today I joined my daughter and my husband for the audition workshop for “The Wiz”, the musical that Bay Area ETC is doing this spring. Part of me thinks I don’t have time, and that I have other important things to do. This article was a timely reminder that doing what I love is the most important thing I can do, and the fact that I get to do it with my sweet family makes it all the more ridiculous not to do it. So, this week I’ll be warming up the pipes, practicing my cackle and hoping the director can see my diabolical side!

    go here to be reminded.

    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!

    As I have become more and more overwhelmed by what I want to do and more serious about it, I have been noodling all over cyberspace.  What I have discovered is that there are tons of wonderful resources out there!  The trick is finding them.

    What I do is go to a blog I like, then go to a blog she likes, and another, and so on.  It’s a wide world in cyberland, and a wonderful community of serious bloggers who are giving hope, educating, and dealing with cancer with courage and grace.  Today I found Being Cancer Network.  The blog was conceived by a two time survivor who beat the odds, and is now facilitating a blogger network to help people cope with any diagnosis.

    What I am finding is that there is a vast, amazing flow of information and inspiration going on, and all the ideas I have floating in my head about what will be helpful are already being implemented!  That is just SO amazing and fantastic.

    My vision of this site is expanding and coming into focus.  All of this great stuff I’m finding will be traceable from here!

    I found Survivor Profiles.  I’m sure I will add some of my own, but there are some already out there that I can link to.

    The blog network is inspired.  I didn’t think of that one at all!  What a great resource!

    I would like to profile supporters as well, or find supporter profiles so that people who are walking with a loved one on the cancer journey can find wisdom and support as well.

    I think that the most important thing I have learned, that I feel is hugely important to my thriving into the future, is that passion is life force.  I have had many occupations, both paid and unpaid, that mattered to me.  When I was a single mom with a huge responsibility to (in my mind) sacrifice creative passion to practicality, I failed to thrive.  With lack of passion, and with constant, relentless stress, my body was too depleted to fight the beast when it invaded.

    Today, the day after Thanksgiving, I enjoyed time with my daughter, her friend and her friend’s dad.  We saw “Tangled” which was just delicious!  I enjoyed it immensely, and when I got home I happily greeted my computer, ready to roam around looking for good stuff, and ready to talk about it.

    All work and no play is no fun and not good for anyone.

    The perfect work is the one I’m glad to leave play to come home and do!

    If any of you, my readers, discover another gem, please tell me!  I can’t wait to post about it right here.

    I have always loved Thanksgiving.  It’s a welcome pause to stop and enjoy my family and my many blessings.

    Thanksgiving of 2007 was poignant, and each one after that is a benchmark.  I am another year older, and then there is Thanksgiving!  The focus is the turkey, the festivities, family, or perhaps loneliness and hardship, which good hearted people try especially to ease at this time of year.  What’s great about this whole hoopla is that we are reminded to give thanks, and our churches, workplaces, schools  and communities build gratitude into business as usual.

    What if gratitude IS business as usual?

    My whole perspective on this has changed considerably.  I am grateful that my children are little stinkers and made me so mad I wanted to tear my hair out this morning.  Why?  Because when Thanksgiving came three years ago, I was still weak and sick.

    When I was undergoing extremely aggressive treatments for an extremely aggressive cancer, my little pistol of a boy was exquisitely well behaved.  That was because he was scared out of his mind.  That he is an irascible 13 year old is simply beautiful, and I am so grateful for that!

    When I had my 36th birthday, my baby boy was five months old.  His godmommy had played with him earlier in the evening, and as I rocked him in my rocking chair, singing him a lullaby, he anointed me with all the churned contents of his little tummy.  I laughed, got us both to the bathtub and got us washed off, and reflected on what a gift I had just received for my birthday!  I had miscarried before this beautiful boy had come into the world, and the privilege of little baby barf was just perfect.

    Having faced the very real possibility of not having the privilege of getting old, I am grateful for my wrinkles, my occasional aches and pains, and that I get to be around children a lot.  I am grateful for the smell of rain.  I am grateful that I can write, that I can sing, that I can be taxi service for my 11 year old socialite daughter.

    All of us grumble.  It’s human, and it’s comfortable.  Gratitude has not always come naturally to me, but now it does.  Not a day goes by that I don’t give thanks for my life, and every beautiful thing in it.

    Every day on this earth is a gift.  None of us know when our time is up.  We could be called home at any moment.  The lingering memory of my cancer experience ensures that I am keenly aware of this.  I am grateful for the exalted and the mundane, the frustrating and the outrageous.  Sometimes the joy is so huge I feel that I can’t contain it, nor would I want to.

    I am grateful even for suffering.  I know what I can endure, and I have a glimpse of how much love my heart can hold.

    The Sufi Master Hazrat Inayat Khan said, “God breaks the heart again and again and again until it stays open.”

    Blessings to you and yours this Thanksgiving!

    Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it.

    When I received my diagnosis, I called her up and told her “the scoop”. She did not in any way blow the whistle on herself, she did not in any way indicate how she felt about this news. She asked for Dr. Brown’s phone number so she could talk with her personally, and later called me to tell me that she felt “very reassured”.

    I was perfectly happy to let my mom be the keeper of scary information. I figured she would tell me what I needed to know, and she did. I focused on managing the treatments and keeping my momentum, because I understood that this was what I had to do. I took care of myself, blogged, let people help me, and attached myself to fellow survivors and patients that inspired me.

    I looked into IBC a little more after my surgery. I freaked out a bit then for a few weeks, and then decided that it was a waste of my precious time. My self care program continued to be my focus, and the weeks and months passed.

    Now, nearly four years later, I am surfing the net for fellow survivors. I am finding women who were not so lucky as I was, women who waited too long to be diagnosed through no fault of their own, or whose cancer was just that much more of a cussed animal than mine was. I am aware that although I am past the highest risk period, there are no guarantees. I must use every day to good purpose. This is of course something I want to do anyway.

    This dose of reality is something I can cope with now. Not so much before, when I just had to keep my eyes on the prize, the chance to see my two beautiful children grow up! Now that the worst of it is over, I am more than ready to focus on doing all I can so that others are spared. Getting the word out about IBC has become an obsession. Finding hope and sharing it has become my life’s work.

    Sometimes emulating an ostrich is really not such a bad strategy!

    Inflammatory Breast Cancer is very rare, and very aggressive. I am alive today because I went to the doctor right away for something that looked like nothing. The doctor who did my ultrasound knew about IBC, so I had a needle biopsy that day and from biopsy to chemotherapy was ten days. It wasn’t a minute too soon.

    IBC is survivable, but timely (and that means FAST, folks) diagnosis and treatment is critical.  If you or someone you care about has any of the following symptoms, get to your doctor and persist until you know exactly what it is. This information is directly from the IBC research site that I have posted in my links.

    One or more of the following are Typical Symptoms of IBC:

    • Swelling, usually sudden, sometimes a cup size in a few days
    • Itching
    • Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
    • Ridges and thickened areas of the skin
    • Nipple retraction
    • Nipple discharge, may or may not be bloody
    • Breast is warm to the touch
    • Breast pain (from a constant ache to stabbing pains)
    • Change in color and texture of the areola

    If you suddenly develop a lump or mass, have it checked immediately. We have one reported case where a 9x8x5cm lump developed in only three weeks.

    Use caution when relying on the interpretations and reports of the mammogram or ultrasound! Inflammatory breast cancer usually grows in nests or sheets, rather than as a confined solid tumor. IBC may not be detected using either mammography or ultrasonography. Increased breast density compared to prior mammograms should be considered suspicious. Remember: You don’t have to have a lump to have breast cancer. (end of import from IBC site)

    My own experience was that a quarter sized rash became a raging hot red breast with an inverted nipple, all in the two weeks it took to get from GP to ultrasound.  When I had my scan it showed a sheet that was 11(!!!#&*) centimeters in diameter.  I was lucky.  Too many women are still losing the battle with IBC because no one shared this information with them.

    Maybe talking about breasts with someone makes you uncomfortable.  Sometimes women get uncomfortable when I share this information.  Never mind.  If she’s the one to five in a hundred breast cancers that is IBC, she will thank both of us for saving her life.

    Please tell everyone you know!

    Thank you so much for reading.

    I secured my first Thriver story today.  My wonderful postman, Douglas, has agreed to tell me his story so I can post it as my first Thriver Profile.  My plan is to present these profiles of real people beating cancer on a regular basis, around once every two weeks for awhile.  I have at least twenty people on my list!

    Douglas and I were talking today about what a morass the internet is when you’re newly diagnosed.  There is so much information, and a lot of it is very valuable.  Some of it is contradictory.  Some of it is outdated and scary.  I suspect a lot of us, like my friend Douglas, will flail around out there for a couple of weeks and then “just put it away”.

    I want to offer something different here.  For every cancer, there is somebody who has prevailed against it, and it is those people that cancer patients need to know about!  If you’ve just been diagnosed with colon cancer, Douglas’s story will give you hope.  If you’ve been diagnosed with Inflammatory Breast Cancer, read my story and take heart, because that is why I tell it.  If you are facing Ovarian Cancer, then you can be uplifted by my Aunt Joan’s story and my freind Avis’s story, if they will let me tell them.  I haven’t asked yet!  :)  These two amazing women have both conquered two separate cancer diagnoses.

    I know people who have faced and prevailed against colon cancer, throat cancer, Lymphoma, and Triple Negative Breast Cancer. I know people who were diagnosed at Stage Four and today are cancer free.  I also know people who are in remission and going about their lives, coexisting peaceably with their metastatic cancer. A friend of mine has a brother who has survived over 15 years after a belated diagnosis of Breast Cancer.  All of these people are on my list, and if they say yes, you will read their stories.

    As this site develops, I am getting a clearer and clearer idea of what I want it to be.  This is a place to find tools you can get your hands on with great strength, tools and inspiration to keep your chin up.  Sometimes keeping your chin up is the most important, and maybe the only thing you can really do today.  I’ve had plenty of days like that!

    You don’t have to have cancer in your present, future or history to welcome a boost of some kind.  I hope anyone who wants one can find it here.

    Second thing:  I need to adjust my tagline.  I don’t want just “resources for during and after cancer”.  What can I add to this line that expresses what I’m really doing here?

    Please, comment away, I need your input!

    P.S.  Are you seeing popups on this page?  I you are, I am going to kick some —.  I hate popups and I am getting them on my admin page.  Please let me know!

    P.P.S.  I just updated “my story” with photos.  It’s kind of a long story….

    I just posted a blog about Inflammatory Breast Cancer.  Why?

    It’s a rare cancer, so it may not be relevant to a lot of people.  But for those who want to know, it is more than relevant, it is extremely important and unbelievably scary.  Why?

    Stinkin’ statistics!

    When you or someone you love is diagnosed with cancer, it is tempting to look for hope in statistics.  The problem with that is that many statistics are irrelevant by the time they’re published.  Sometimes you’ll find different statistics in different places.  If the statistics are on your side, maybe it helps to look at them and maybe not.

    When I was waiting for my cancer diagnosis, my mom was going crazy on the internet, looking up all kinds of breast cancer and trying to second-guess her fear.  What I had sounded alarmingly like IBC.  She told me she said to herself, “oh please God, not that one!”  Everything she read about it sounded terrifying, the statistics not the least.  She didn’t tell me any of it.  When Dr. Brown gave me the diagnosis of Stage Three Inflammatory Breast Cancer, her tone of voice and facial expression told me it was breast cancer, period.  She told me that I had an aggressive cancer and that we would treat it aggressively, and she was optimistic because she was confident that I could handle the treatments.

    I responded to her optimism with my own.  I was very blessed to have her and the other amazing docs on my team taking care of me.  I didn’t know that I had the bogeyman of breast cancers until later, after  my “phenomenal” response to chemotherapy.

    So, if you or anyone you know is facing cancer, forget about statistics if they aren’t great.  If they are, so much the better.  Each of us gets to choose where to direct our energy, and for me the pursuit of my own happiness and well being was the most important task on earth in 2007.

    I still try to remember that. When Mama’s happy, everybody is happy!

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