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    From the monthly archives: February 2012

    I had forgotten how nice “no agenda” days are. Happy Presidents Day!

    I got up when I wanted to, and pretty much have done what I wanted. I had three teenage boys here, so I made them pancakes this morning, but not until I’d had my coffee. I’ve been puttering in “my studio”, which began as a shed that my husband built for me last year. I consider it my own little house, as well as my ongoing art project. Soon it will be an office.

    Nearly five years ago, when I was diagnosed with Inflammatory Breast Cancer, I automatically qualified for Disability. because I was either expected to die or to remain very sick for a long time. I didn’t die, and now, nearly five years later, aside from a slightly temperamental left arm, I’m not sick. My memory is even improving, dramatically in this last few months. My disability is ending, and I’m gearing up to go back to work in earnest. I’m telling myself that I can handle it, that I know how to manage myself so I don’t burn out. Days like today are good.

    I’ve been able to work part time and pace myself, as well as enjoy being a mom. I still have my rough days. All in all, I can’t complain. I’m fortunate that I have a skill that I can use the way it works for me.

    My days of full time massage therapy are over. An eight hour day would make my arm swell up like a tree trunk. I have been delighted to discover that I can tolerate working on kids really well, and I can do one or two of my good ol’ get in there and get it done massages in a day, if I elevate my arm afterwards. I’m so glad I still get to do that. It’s been 20 years doing this, and I love my work. I can do this and still do my mom thing. I’m lucky.

    I got my business license from the city, and starting in March I’m open for business. Woo-Hoo!

    Five years on Wednesday. Wow. Moving on with my life. Rock’n'roll.

     

    Last week was rough.

    We lost Susan Niebur on Monday, then on Tuesday Rachel Moro left us. It was a weepy week.

    And…..

    People who don’t like my writing on Yahoo occasionally can’t restrain themselves, and find me here to write their comments. I don’t think they even read my blog, so announcing that I spam these people doesn’t even help! Aaaaargh…

    I had a few things to say on Yahoo News about the Komen/Planned Parenthood mess. It was particularly irritating in the face of what’s really going on in the world of breast cancer. We haven’t won. Two of my friends died last week, and two others have lost their hard-won remissions. AND crazy right-wing nuts write to me on my website to tell me to shut up.

    NOT! I will not shut up. I will not desist, I will not be polite. I will not give up until I stop losing my friends to breast cancer.

     

    Susan, your passing brings such deep sorrow and so much gratitude for your life.

    I myself am speechless, so let others more articulate on the web tell the story.

    The world already feels more hollow without you in it, and a better place because you were here.

    http://www.care2.com/causes/susan-niebur-stargazer-fighter-and-friend.html

    toddler planet

    The Washington Post

    The WhyMommy Love Fest

    Dr. Susan Niebur

    Mothers with Cancer

    communities/the washington times

    I can say nothing to add to these stories, except that I was blessed to sit at “the blogger’s table” with her last may in D.C., and got to hug her. We knew each other through our blogs and our shared diagnosis. We traded comments and encouragement.

    She made an enormous difference in my life, and in the lives of so many, across so many paths: scientist, mother, IBC activist, advocate, friend. She was an extraordinary woman, taken from this world too soon, before she was even forty.

    Tonight I cry. I have made space for that this week. The world must stop for a time.

    Many of us in the cancer blogosphere are uneasily waiting.

    We haven’t heard a peep from Susan Neibur of Toddler Planet. She was diagnosed with Inflammatory Breast Cancer in 2007, and her road has been far more difficult than mine. It may be coming to an end. I can’t bear the thought. Her last post was before the hospice people came, on January 22. I hope against hope, waiting to hear that she’s rallied, she’s back in her chair with her little boys cozying up and making her laugh.

    Despite getting knocked down by recurrences over and over, Susan has been a scrapper in the world of advocacy, what a dear friend of mine would call a She-ro. She’s my hero, and if she leaves the planet I’ll call her my angel. She’s been an inspiration to me for as long as I’ve had the privilege to know her, which hasn’t been long enough. I’m profoundly grateful that I got to meet her face to face in D.C. last year, and actually hug her.

    Sending hugs and prayers Susan, waiting with hope to hear that you’re all right.

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