Yes, we still need research

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.

Crossposted at the author’s personal blog, Toddler Planet.


6 Responses to Yes, we still need research

  1. unduk says:

    Nice article!
    Much food for thought…
    It really made my day.
    Thank you.

  2. sprucehillfarm says:

    Very good post Susan! We need a cure now!

  3. Wow, I did not know about those statistics! It’s like you are sitting on a time bomb! That must be so difficult!!

    Well, a lot can happen in 15 years. That’s what I am counting on too!!

  4. Kate says:

    I enjoyed your post and this blog very much. I can tell you are a strong person.
    You had invited me late last year to join Mothers With Cancer, and just afterwards I was diagnosed with a new cancer. Have been busy with treatment, and am still in the midst of treatment, but now feel I have something to say. Is it too late to join this wonderful group?
    Katie (of Gotta Keep On Keepin’ On)

  5. whymommy says:


    Welcome aboard. I’ll email you separately.

  6. Jennifer says:

    I’m so excited to find a site of other mom’s dealing with cancer.I have two beautiful girls looking to me for strength. But sometimes it would be nice to “let my hair down”(I’m just starting to grow some back) and talk about my cancer!

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