• The boys and I

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    I’m 44, married and live in a sewerless small town on the central coast of California. I am an Inflammatory Breast Cancer survivor. My passions are reading, knowledge, shopping and photography – in varying order depending upon my mood. Though I’ve always wanted to be really good at something, I find that I’m just pretty good at most things. I live with my husband, Daddy-O, and our sons, Ben and Danny who are 10 and 5. Ben has ADHD and enough natural energy to power the Pacific Time Zone… and he’s not afraid to use it. Danny has Norries – a rare genetic disease causing him to be born blind. It’s a crazy, hectic life but I can’t complain any more than usual.
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Lucky Patterns

I have had Inflammatory Breast Cancer.  Even four years afterward part of me still doesn’t feel free of it.   I guess most of me has moved on, though.

One in eight women will get breast cancer.  That’s roughly 12.5 women out of every 100.  Only 5 percent of all those women with breast cancer will have IBC.  It’s an exclusive club you don’t want to belong to…  Yet I am becoming more and more aware of repeating patterns of Inflammatory Breast Cancer association.

When I was first worrying about all the changes happening in my breast and beginning the cluster of appointments that would lead to my diagnosis, my new bff told me that I had a Get Out of Cancer Free card.  Her previous bff had died of breast cancer just a few years earlier and she believed “God wouldn’t do that to her twice.”  Heh.  Of course, I was diagnosed despite her assurances.  We spent many long phone conversations rehashing her friend’s symptoms, illness and death.  We came to believe that she had most likely also had IBC.

In August I met Kelly soliciting donations in front of Wal Mart for her Avon Walk for Breast Cancer.  She was walking Santa Barbara.  I gave her a small donation and she handed me a pamphlet on IBC.  I was more than a little surprised.  Not many know about Inflammatory Breast Cancer.  “Who had IBC?”, I asked her.  Turns out her mother had died in only 18 months after her diagnosis.  When she found out I’d had IBC she seemed stunned.  Her voice quieted as she told me that she’d never met an Inflammatory Breast Cancer survivor before.

Wow.  It was a poignant moment for me.  I still remember quite clearly finding the Survivor Stories online.  They were so very encouraging… but also very old.  At the time I don’t think there was a post newer than 3 years old.  I couldn’t help but wonder if any of those women were still alive.  Kelly’s admission gave me a rush of emotions.  Pride – that I’d beaten the beast and could stand there to tell about it.  Sadness – that there are so few IBC survivors.  And happiness that I was able to raise a living, active voice above the silence of lost women.

Ironically, Kelly knew her mother had IBC because her bff’s mother had also had it.  Am I the only one that wonders at the mysteries and coincidences of the universe?

Fast forward to this week when Kelly & I helped our local morning news anchor with a story on IBC.  Here’s the video if you’re interested. Please listen to the symptoms.  Most of all, tell the other women in your life about them, too.  Kelly knew the symptoms from listening to her friend talk about her mother, though she’s not sure if she ever shared them with her own mother.  I knew something was wrong before diagnosis but delayed talking to anyone about it until it was almost too late.

I’m one of the lucky ones.



3 Responses

  1. Thanks for posting the video link, Stella. I’m a survivor (though not IBC) and I like to check in on you and your blog, every so often. Stay well!

  2. Hi Imstell,
    Since 2005? That’s fantastic! My mom told me about a woman who was diagnosed with IBC some 15 years ago and was told to get her affairs in order. She’s still with us, advocating.
    I am a Stage IIIC, Her2+ suvivor diagnosed in February of 2007, currently NED, raising my 11 and 13 year olds and feeling so unbelievably grateful.
    I’d love to put you on my IBC victory page! I am building a virtual room full of survivors so someone just diagnosed and scared can just scroll and scroll and scroll.
    Just finding you here has done me a world of good!

    • Elizabeth – What a wonderful idea!!! Do you mind if I steal it? finding only old posts from “survivors” was one of the scariest, disheartening moments in my journey. Hence our Mothers With Cancer site.

      I would be honored to be on your wall. What would you need me to do? (I’m thinking I’d like a smallish cancer bio from everyone on mine.) Feel free to email me privately @ imstell@yahoo.com.

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