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    I honestly love happy racket.

    Right now my heart-daughter and grandbaby are asleep downstairs, my daughter is on my bed harassing me instead of making the coffee I want, but she will eventually…

    My son’s best friend, my extra kid, poked his rascally head in my door this morning to wish me happy birthday. We’re all tired and silly, because last night was opening night of “Annie Warbucks”. Tom plays the stuffy butler, Miss Peach a rascally orphan, HD (heart daughter) helped with the stage crew, and the baby (“Bubbeeee…”)kept me company as I herded children (as a chaperone) backstage. It was a little odd not being on the stage, but I have enjoyed the long quiet afternoons when Tom and Miss Peach were at rehearsal. Tom and Peach are in the Big Apple cast, so they have two more shows to shine in their big parts.

    Today I am taking the day off, because it has always been my habit on my birthday to take some time for reflection. The last four birthdays this has been especially so. I am always so overwhelmed with gratitude for another year. I am keenly aware of how fortunate I am. This awareness is bittersweet today, because this last week I lost another IBC blogsister, Ashley Warrior Mom. Her IBC battle lasted two years. Two other blogsisters are fighting like hell. I know that each day I get to spend here on this delicious planet is a gift, and each year I get to have a birthday I think about how to make the most of the year coming.

    One of the little things that makes me happy is that I have never had a bald birthday. I know that may sound like a little thing, but somehow it makes me feel like I got away with something. For my 45th birthday I had hair, and was blissfully ignorant of the thief that had snuck into my house and was preparing to wreak havoc. By the time my 46th birthday rolled around, my hair was back, thick and wavy, I was feeling much better, the herceptin was tolerable and I was NED. I had hope, and I could see a future. I guess each birthday that passes now is anchored in to that triumphant time.

    What’s ahead? Enjoying my children, more time at Lucille Packard, more writing, perhaps more theater (when another villain part comes up for a soprano I’m all over it), gratitude, more advocacy, scrapping for the end of breast cancer by 2020. My beautiful daughter is twelve. I want her and her beautiful friends to grow up in a world without the fear of breast cancer.

    Oooh, Bubbee is up. Time to be Grandmama…

    This last weekend was amazing, not just for what I learned but who I learned it with. There is really so much to be done to change public policy and perception about breast cancer!
    Like so many newly diagnosed, when I first learned I had breast cancer I thought that all I had to do was take a deep breath, face my fear and get on with it. I had been affected by awareness blitz of the last decade that has inadvertently convinced a generation of women that mammograms and education had gotten the upper hand over breast cancer. To be told at diagnosis that my disease was serious (and read between the lines that it could very well kill me) was not what I expected.
    This weekend I learned why breast cancer is such a ferocious, still underestimated foe. I learned how breast cancer outsmarts treatment, and what is being done to outsmart breast cancer. I am heartened by how much we have learned, and frustrated by how far we still have to go.
    The biggest takeaway of all is that the divisions that exist between breast cancer survivors and advocates really don’t need to be there and are counterproductive. Breast cancer is a sneaky beast. It puts out little migrating cells very early in the process, which means even early stages of disease are at risk for recurrence. In my mind, it doesn’t matter if we are NED, metastatic, or haven been treated for “just” DCIS. It’s all breast cancer, and regardless of the diagnosis we join the prevalence statistics. That’s right. In evaluating the prevalence of disease in the U.S., I count as someone with breast cancer, even though at the moment I am NED. “Cure” is actually a misnomer when it comes to us. No one knows if we’re really cured once we’ve been diagnosed.
    So what about Deadline 2020? What does “cure” mean?
    It means that:

    1. We stop being diagnosed, as in we prevent it from ever happening in the first place.
    2. Women whose cancer has metastasized have weapons in the arsenal that will not only prolong their lives, but eradicate their disease for good and go on to live normal lives.

    We are a long, long way from these. I believe that if we focus, we can apply this focus in the same way other major milestones have been achieved, we will achieve this one, but not without a lot of people working together.

    My buddy Donna (what a thrill it was to finally meet my cyberbuddy!) and I were noticing that it was an extraordinary sort of woman who attends these things, who wants to be an advocate. Are all people who get this stinky disease amazing people? Is the disease that smart?

    No. It is that some of us respond by wanting to do something about it. The rabble rousers, action takers, loudmouths, women who have had enough…it’s the “uppity” ones who come to join the fight for the deadline. We are the NED, the Metastatic, the DCIS, the supporters, the educators, the researchers, all represented in that micro community this weekend. We can do it if we work together.

    Contrary to what we may think divides us, we are all in the same boat. We have all been affected by breast cancer and we’ve all had enough.

    The day after tomorrow I will get on board a train and go to Seattle for another advocacy training. While the pink ribbon campaign plods along (the month is getting old, after all) and the hoopla continues, women put one foot in front of the other and plod forward, in advocacy or in treatment.

    The blogosphere has been busy lately. Fallen sisters, survivors speaking out against pinkwashing, daily breast cancer facts, metastatic breast cancer awareness day. Today two amazing warrior women are telling it like it is.

    Susan Nibur is a scientist, a mom, an advocate, an activist, and a simply wonderful human being. While she struggles with metastatic cancer, she has taken the time and energy to write a post about the realities of her life with metastatic IBC. Her in-depth, honest, complete account is a labor of love. Please read her story if you want to get past the pretty pink and know what we’re really up against.

    Likewise my other friend “down under”, who today wrote a post about facing death. This woman continues her commitment to getting her university degree while coping with treatment side effects, and somehow having the presence to pursue her studies while keeping a “my funeral” file. Read her story and get a good look at real strength.

    These women, and other amazing women like them, occupy my cyberworld and lift me when I want to whine. Today I am refreshed from my backpacking trip and have immediately managed to overcommit myself. I have writing deadlines, packing, momming, and a bizillion other concerns before I leave for Seattle on Wednesday, and I could easily just spin out on adrenaline. I don’t want to do that. I want to be mindful, aware every day of how precious each one I have is. I am so, so lucky that I don’t have to live my life under the burden of toxic treatment to keep me alive. I am so fortunate to have the stamina to overcommit myself (sometimes) and get away with it.

    What I can do now is go learn some more, and put that knowledge to good use in every way I can. I also continue to write what I know for whoever needs it. I just published another article for getting through chemotherapy, this one specific to
    managing the effects of taxol
    . My IBC article has made it’s way past Associated Content into Yahoo News, and that makes me happy.

    Susan and J, your stories are where my commitment comes from.

    This last weekend, we had beautiful weather until it was time to leave. The sound of rainfall on our tents got us up and moving. We packed in a fine mist, and then as we prepared to leave we were gifted with the most beautiful rainbow. I have it on my desktop now to remind me to keep on keeping on, and believe that breast cancer can end by 2020.

    hope

    our parting gift

    F—#*!!!! CANCER!

    Every so often I go roaming the internet late at night. I followed the blog of my friend Anna, and ran into the devastating stories of more lives lost, to ovarian cancer.

    My support of Deadline 2020 for the end of breast cancer is something I am 110% behind because it’s time for the end of ALL cancer. Yes, that is ambitious, but it’s logical. The important pieces we learn about one cancer often leads to inroads into understanding other cancers. We will wipe out breast cancer when we understand how to prevent it, and how to stop metastasis. Do do that we need a major paradigm shift, because currently only less than 5% of research currently goes into the study of metastatic disease. People don’t die of cancer in the breast. They die of metastatic disease. What the @#!!! is going on here? When we understand this process and how to stop it, the treatments for many cancers will change. For more on what’s really going on in breast cancer research, check out the Deadline 2020 website.

    I lost my father to Lymphoma when I was 19 and he was 44. I have several friends with metastatic breast cancer and I am reading all across cyberspace about more deaths, a tide that has to be stopped.

    Fran Visco said this weekend that when we reach January 1, 2020, we will all be out of a job, because we will have accomplished our objective.

    Not me. Not until it’s over for all of us.

    When I look back at the entry I posted yesterday, I am reminded of the amazing way that so many people stepped in to support me as I went through treatment. What’s interesting to me now is that I don’t recall anyone actually asking me what I would like them to do! I was blessed in the extreme. Very seldom did a need pop up that wasn’t met before I even asked.

    What everybody did was perfect. It was not usually what I might have expected, but it was what each person did best and it was always wonderful.

    The Charge Nurse on the 5th floor at Mills (where I had been giving inpatient massage once a week) organized a meal sign up for my family. She put out the call, and many of my co-workers signed up to bring meals. All I had to do was tell her when the infusions were, and when the worse days would usually be.

    Several of my colleagues in the Massage Therapy department took it upon themselves to see that I got a massage every week while I went through chemotherapy. One of the therapists chose to make soup instead. Every Friday she came over with fresh, delicious soup and a little visit to cheer me up.

    My friend Becky, who went to comedy improv class with me, heard the news of my diagnosis and announced, “give me your address. I am going to send you a wonderful healing card”. And she did. Again, and again, and again, pretty much once a week. These were not just cards. They were wild, wacky, exuberant, sometimes soft, always beautiful amazing works of art. Even the envelope would make me smile.

    My boyfriend, Steve, would call me every day on his commutes, and make me laugh. He also helped me get through it knowing I was still a beautiful woman. On rotten weekends he would take care of me, and on good weekends, our four kids and the two of us did normal things. That was all so important. He stayed with me for most of the journey, and we parted friends.

    My mom, who was far away in Seattle, surfed the net for information and hope, and passed all the good stuff to me and kept the scary stuff to herself. Poor mom. That was a heavy burden, and she bore it without complaint, or even letting me know there was anything but the good stuff.

    Other parents took my kids to school. Flo, my #1 sidekick and all around support person, recruited her husband Don and they took the children out regularly, and helped me get them to bed. When I would call Flo up and complain of how miserable I felt (she knew about it, she’d been there) Don would call out in the background, “remember to tell her it’s TEMP-O-RA-RY!” and I would sigh and take heart.

    Several dear friends and family members flew down from Seattle, or ventured across the bay, to stay and take care of me during the yucky chemo days. Susan (I’ve known her since 6th grade. The kids call her Auntie Pickle), Christie, my mom, my sister, Holle, Aunt Ding Ding (Darlene, Ding Ding since we were babies), my sister in law Andrea, they all took their turn.

    Terry took me to Filloli gardens once lovely spring day. It was perfect.

    My brother set up a Netflix account so I could watch funny movies. The night after my surgery, my mom and my sister howled as we watched “the 40 year old Virgin”. Mom hired me a cleaning lady at the very beginning, and kept her until I was strong again.

    My friend Melissa made me the most wonderful collection of delightful, wacky hats that I had the audacity to wear frequently. They always brought a grin when I went to the infusion center with one of those on my head!

    So many people watched my Caringbridge journals, and left wonderful messages in my guest book. I would go and read them when I felt really rotten.

    If someone you know is facing cancer, don’t stress about what you can do to help. Do what you love to do, do what feels natural. You will certainly be a blessing.

    Looking back, I am again amazed and in awe of my army of angels.

    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.

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