More word gumbo

A few more things to put out there, not all of them good, but not all of them bad either:

– The world lost an IBC warrior this week, a friend to many in the IBC advocacy community.  Norma Greer, an IBC advocate in Arizona and a friend through the listservs, lost her battle this week.  She will be missed;

– Cancer yoga has been helpful beyond words to me.  I think I’ve finally become comfortable with my own skin, which is ironic, since there’s now so much less of it in places (and more of it in others!);

– I really enjoyed meeting Jen Ballantyne and her friends Meg and Bella this week, exchanging comments, and seeing pictures of her beautiful boy.  Some days, I think making new friends (and keeping old ones!) is what the blogosphere is all about;

– My skin is healing nicely; the scars are not bothersome at all.  Although there is a little swelling under my arms that I find ugly, I’m already shopping for a new swimsuit and summerwear;

– We went shopping today and it was actually fun;

– I keep reading and rereading this thought-provoking post from Bella at Beyond the Map.  The words echo in my mind:  Trust your body.  As I worry over my scars and feel the shame of extra skin and fat, as I check out reconstruction photos and recoil at the thought of my body needing such, as I wonder and worry about the future of this skin, I am thinking a lot about things like this, and wondering.  But I think she’s right.  Trust your body, it knows what it’s doing and it knows what it needs.  And so I will take my vitamins and eat my vegetables and not subject it to further surgery unless it will  help heal me;

– Someone asked today on the IBC support list whether all the pain, the trouble, the discomfort, the vomiting, the booblessness (no she didn’t!) was all worth it.  I say YES.  to all.  And the booblessness?  So far, it’s such a net positive.  Not even 3 weeks out, I feel great and light and carefree without the worry of recurrence in my breasts.  Such a good thing.  Not that it’s easy; it’s a terribly hard road, but IMO, sooooo worth it;

– If you’re getting a mastectomy, I’ve learned that you should stock up on the following:  soft cotton camisoles, big button down shirts, cocoa butter, aloe (if you’re going to be doing radiation afterwards), gauze bandage pads and tape, and spray deoderant.  I have never seen a list quite like this, but, trust me, it’s a good one.  It’s not easy to find spray deoderant anymore, by the way, but if you don’t at least try it, you’ll have to find someone else to apply the regular stuff to you every morning.  And that?  Gets old.  (While I’m sure Jess or Stimey could make a hiliarous blog post from this bullet, I’m just slightly embarrassed.  Ah well.  That’s why Oh, The Joys and Stimeyland are so much fun to visit!);

– Widget’s words to me tonight as I was putting him down, “I want to help you.  I want to help you with your work.”  When I told him I was starting to write a book about a NASA program that I used to work with, he said, “I want to write a book too!”  So look out, world!  It sounds like there’s a book about firefighters, planets, backhoes, dogs, and baby cats to be written someday!

– Oh, and Imstell asked recently whether I’m going to get breast reconstruction.  Nope.  I’ve decided not to.  And not just because it’s easier to do scans and such to catch recurrences early without reconstruction.  Not just because I can’t have any work done at all until after radiation, and I’m not a candidate for implants now for a number of reasons. Not even because the idea of transplanting belly fat, back muscle, or tush (as my three-year old and I call it) muscle to my chest doesn’t appeal to me.  I’m just not going to do it because I’m happy with myself right now.  I’m happy with my body the way it has to be right now, even if I am more than a little pear-shaped(!), and I’ll just have to get used to it.  Because that’s what the new normal is for me now;

– And it’s all about the new normal.

Next week, I go to meet with my medical oncologist, my radiation oncologist, my surgical oncologist, and my lymphodema prevention physical therapist.  Whew.  I guess I’m not done healing after all!  Soon, soon my body will be recovered.  Healing, I’m learning, can take even longer. 

But the end result may be better than any of us even imagined.

(Tomorrow, I’m giving away blog awards that came to me this week from Leanne and Robin.  Fun, fun, fun!)

14 Responses to More word gumbo

  1. Stimey says:

    New normal sounds great! I like reading the words “fun, fun, fun” on your blog.

  2. and it is all about the new normal!!!!

    W00T! I love hearing (well reading, whatever..) those words!

    Looking forward to Widget’s book 🙂

  3. and through it all, you just keep on helping others… you, lady, are simply amazing!!!!

    New normal… WOOT!, indeed!!!

    what *is* normal, anyway? Certainly not anything, or any*one*, I know 😉

  4. mummycha says:

    Yep, be proud of your body! What really matters are your beautiful blue eyes and your smile that expresses your great spirit!

  5. Andrea says:

    It is all about the new normal. I too decided against reconstruction. I had a plastic surgeon close my incision and I am fine with my scar. Well not fine but whatever. I like being flat chested. I am with you. I am wondering where one goes for cancer yoga? That is something I totally need. And Susan I have lost 41 lbs. since my surgery. It comes off doll. Don’t sweat it. I pray for you all the time. I am thrilled you are doing better. Oh and cvs has a wonderful natural deodorant that sprays on and really works. I think it is salt based or something. God Bless. Andrea

  6. Meg says:

    I have really enjoyed meeting you too and am enjoying checking in on this beautiful blog. Thank you–you are an inspiration!

  7. Eva says:

    Hurrah for you being comfortable with your new normal body. And isn’t it cool to see how our kids’ minds and ideas develop? Your Widget sounds like a compassionate and creative little guy.

  8. okayfinedammit says:

    you are an inspiration to me. No cancer here, just a woman who’s never quite learned how to embrace her body the way it is. You make me think, and you might even make me change. I can’t thank you enough.

  9. whymommy says:

    Andrea — try The Wellness Community near you for free(!) cancer yoga for folks fighting or within 2 years or so of treatment. If you don’t have one nearby, look for “gentle yoga” at your local yoga center or YMCA and ask the teacher ahead of time if she is willing to help modify poses for you as needed.

  10. Imstell says:

    The New Normal is Your Normal. That’s how it should be.

    For me, reconstruction was never in doubt. In my mental fight against cancer it would have been as symbolic as waving a white flag. One year out, I am soooo much more than please with my decision. I have never been happier with my body. Reconstruction has been very good to me. Whoda thunk it?

    I loved Bella’s post about trusting your body. Listening to it. So important. In all areas. I know women who have passed judgment on themselves (their bodies) for “failed” childbirth. I think many of us pass judgment on our bodies for our cancers. The reality is so much different. You listened to your body. You demanded a double mastectomy. Now you are listening to your body tell you that you don’t need reconstruction. Good for you! You are doing what is right.

  11. amanda says:

    Hey there. There is a double http in Jen’s link.

    So glad to read how incredibly you are doing, though I never doubted you would.

  12. SuzyQatHome says:

    Personally, I find it disheartening how many women rush into reconstruction as if not having breasts after cancer should be “hidden”. (NOT bashing anyone who made that decision – I’m just sad that there is societal pressure to be so perfect all the time!)

    My aunt didn’t have reconstruction done or wear a falsie (this was back in the 70’s). Instead every time someone looked at her oddly or screwed up the courage to ask, she told them about breast cancer and its risks. As you can imagine she is quite the character – and she only had a single mastectomy! She did eventually give in and buy a falsie to wear for special occasions and to church – but I think it was mostly because my cousins were mortified. My uncle has a whole repertoire of one boobed women jokes he tells – quite funny!

    I say enjoy all the new styles you’ll be able to wear and all the time you have with your boys and WD.

  13. Susan,

    It sounds like you’re healing nicely ….. inside and out. That makes me smile. Healing inside is just as important or maybe just a bit more important than healing outside. Not that healing outside isn’t importmant … but you know what I mean.

    Healing inside is just harder. Once the outside is healed, it’s all over … but the inside has a mind, and it takes a bit longer. You’re doing just fine.


  14. Alice C says:

    You have done an amazing job at creating a resource for people with a new diagnosis of IBC and those who love them. However, I can imagine that if it was me arriving here for the first time I would be overwhelmed because there is so much information. I wonder if you would nominate the five posts that you think would be the most useful – a sort of executive summary.

    I appreciate that you have so much to do getting on with your recovery and living your life but if you had time I would be really interested to read it.

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