Avon walk, 2009

A friend asked me today if she could use parts of my story as she began fundraising for the Avon walk this year.  She walked for me last year, and told her supporters about me and the battle that I was fighting.  All winter and spring, she trained for the walk, and, by the time she and two other of my very close friends were ready to walk the 30 miles of the race, I was finally well enough to be driven to the course and sit and cheer them on.  It was a really amazing thing that these friends did, and I was beyond overwhelmed by it.  So … can she use my story as she begins fundraising this year? I am not a fundraiser (I’ve never asked you for money, and I don’t intend to), but here’s what I said to her today.  She also asked how long I’d been cancer free….

Yes. You can use me and my story as you fundraise. You can use my name, my nickname, my website, whatever you need. Heck, pointing people to the Mothers With Cancer website might be good if you want to go that way. We don’t do any fundraising there (there’s just too much!) but it tells real stories of real moms fighting this beast.

How long have I been cancer free? That’s kind of a funny question, I guess, since I view this as a remission and know that the cells are somewhere, growing and biding their time until there’s enough of them to matter. (Surgery showed that the cancer cells had escaped my lymph nodes, and not all of them dried up with the chemo.)

Odds are strong that I will have a recurrence within 3 years; 95% of IBC patients do. I’m doing everything I can to keep it at bay — the double mastectomy, radiation, bilateral oopherectomy, diet and exercise — but it’s a simple fact for me that it will come back when it gets stronger — stronger than me.

Living 15 years post IBC diagnosis is unheard of.

So, the questions are still very relevant for me, and I need the research as much as anyone. 15 years would give researchers time to make progress on this blasted disease and maybe figure out how to give me 15 more. I hope. I pray. So yes, please use me however you can for the walk. I — and many of my friends — am still praying for a cure.


P.S. I’m sorry that this email was so intense.  You asked me to be honest — and that’s the honest answer.  We need a cure.

10 Responses to Avon walk, 2009

  1. Susan K says:

    I assume you plan on being the exception that proves the rule and doing the unheard of.

  2. deb says:

    I admire you a great deal. You know what the odds are and choose to live. In the seventies my father had open heart surgery. He read a statistic some years later that said that most patients who had open heart surgery only lived ten years, he started dying after that. He survived for twenty three years after his surgery and didn’t die from heart disease in the end but he chose to spend years waiting for death instead of living. You choose life.

    Last night I was lying in bed thinking, I’m forty six, I’ll probably only live for forty more years and only feel good for twenty of those years. I was busy feeling sorry for myself, wallowing in my mid life crisis. You put things in perspective. None of really knows, we only have today for sure.

    This is kind of a long comment but I just wanted to let you know. We’ve never met, I doubt we ever will but I think of you and your family and I know that my life is better for having found your blog. You choose life everyday, even in the face of long odds, you choose life. You inspire me.

  3. Lisa says:

    It is a sobering reminder about cancer survivors… and remission. It is hard to think about. I’m with Susan K – you’ll be the one to do it and inspire us all. You are already one of the most inspiring people I’ve “met”… you’ll be the one to lead the pack to long healthy lives!

  4. NoRegrets says:

    I hadn’t realized, or missed, that you had some cells escape… darn. But yes, you are doing well, and a positive outlook I think works miracles.

  5. donna4k says:

    So many deserve a cure.. even when the odds are dismal there are those who are not typical. You already have that much going for you, you really are special.

  6. *m* says:

    Ditto what Susan K and deb said.

    And thank you for the reminder that while there is so much more breast cancer awareness now, we still need a cure.

  7. Sara says:

    Susan, I just did a lot of catching up here on your blog….and what GREAT news of “no mets” Thank God!!!!! You are an amazing writer….and teacher. You put everything into perspective…all this “stuff” we think we need to have done, be doing, going to get….really isn’t all that important.

  8. clifford says:

    so…make it heard of.

  9. dizzymum says:

    You go girl. You make a difference every time you share your story

  10. Bon says:

    i love what Clifford said. i also know you ARE doing all you can, and i think it’s up to all of us to do what we can, by supporting research.

    this is an intense message, but one i think we all need to hear.

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