Advocacy

First, thank you all for your heartfelt comments and prayers here yesterday (and whenever they occur).  I’m feeling better today.  Just whupped from the chemo, and frustrated at the exhaustion.  But my mood?  Never stronger!  I’ve been collecting some updates the last few days and want to share them with you now, along with my Sunday links o’ gratitude to those wonderful bloggers who are spreading the word about IBC – to help another young mother (or old man, or teenager, or single girl) recognize the signs and get help quickly. 

Three weeks ago, I blogged a list of “to do” initiatives to help me get out the word about the signs and symptoms of inflammatory breast cancer.  I’m happy to report some initial results today.

1) Interface with IBC support list to see where they’ve spread the word and where they’ve been successful – I’ve been talking with the women and men on the IBC support list, IBC advocacy list, and IBC blog, and learned so much.  For one, they’re the force behind both the KOMO TV piece and the emails that have been flying around the internet promoting it on You Tube!  Hurrah!  There are also people acting locally all over the globe to try to get discussion of this disease on the agendas of cancer societies and conferences.  They’re also promoting a special online segment on Healthtalk, Tuesday, August 7, 2007, 8:30 p.m. US – Eastern, featuring the famous Dr. C. from M.D. Anderson in Houston.  I’m going to attend online in celebration of my anniversary — On Tuesday, I will have survived cancer for 6 whole weeks! 

2) Reach out to breastfeeding advocates and professionals — nothing yet, but soon.

3) Blog Tour — BIG SUCCESS!  As of this writing, over 250 blogs (yours!) have picked up my piece on inflammatory breast cancer, and thousands of women and men are hearing the news — you don’t have to have a lump to have breast cancer.  If you’re reading this and want to pick it up too, please do!  I’ll roundup your posts like I have the first 123 and the second 130, and link back to your site if you’ll leave me a comment on this post.

4) Local meetings/events — I did talk to the young survivors group last month, but haven’t done much else.  Frankly, I didn’t expect to be this tired from chemotherapy all the time, so I’m crossing this one off my list in favor of the others, that I can do from bed while I recover. 

5) Local media – I went to Andrea’s Buddy Blog, written by Andrea Roane, WUSA 9 anchor here in Washington, D.C., and left comments about the importance of early detection for IBC.  As it turns out, she is a longtime advocate; she did her first TV piece on inflammatory breast cancer 9 years ago.  Those of you in the D.C. area can catch Buddy Check 9 at 9:00 on the 9th of every month.  This month’s topic will actually be IBC, featuring oncologist Dr. Shawna Willey from the Lombardi Cancer Center – what wonderful timing!  I do still want to write something for the Post, and I will, but I haven’t yet.

And now, on to the Sunday List — the women and men using the power of the internet to spread the word about IBC — often called the Silent Killer.

Talking Budgie – July 30: http://talkingbudgie.blogspot.com/2007/07/you-dont-need-lump-to-have-breast.html 

Spinning Yellow – July 30: http://spinningyellow.typepad.com/spinning_yellow/2007/07/from-whymommy.html  

Candy Sandwich – July 30: http://blog.candysandwich.net/2007/07/plagiarized-psa.html 

Mamma Loves – July 30: http://mammaloves.blogspot.com/2007/07/home-again-home-again.html 

Owlhaven – July 31: http://owlhaven.wordpress.com/2007/07/31/no-lumps-no-cancer/ 

2007 – Making It Happen!  – July 27: http://justme7.wordpress.com/2007/07/27/team-whymommy/ 

Maryannaville – July 27: http://maryannaville.blogspot.com/2007/07/dont-just-sit-there-spread-news-and.html 

Defying Gravity – July 27:  http://happymarshallfamily.blogspot.com/2007/07/good-to-know.html  

A Frog in My Soup – July 29:  http://www.afroginmysoup.com/2007/07/please-take-moment.html 

Sunny Days at the Beach – July 29http://sunnydaysatthebeach.blogspot.com/2007/07/spreading-word.html 

Nazarene Family Services – July 30: http://nazarenefamilyservices.blogspot.com/2007/07/inflammatory-breast-cancer.html 

Not Quite Crunchy Parent – July 31: http://notquitecrunchyparent.blogspot.com/2007/07/why-mommy-why.html  

The Land of K.A. – July 30: http://the-kraft-family.com/WordPress/ 

Ramblin’ Amblins’ – July 31: http://ramblinamblins.wordpress.com/2007/07/31/it-can-be-cancer-even-without-a-lump/ 

Lesbian Dad – July 31: http://lesbiandad.net/2007/07/31/apb-you-dont-have-to-have-a-lump-to-have-breast-cancer/ 

Sunny with a Chance of Clouds – July 31:  http://rayshine.blogspot.com/2007/07/support-for-team-whymommy.html  

Circle of Life – July 31: http://circleoflifeblog.blogspot.com/2007/07/how-well-do-you-know-your-breasts.html  

Mama Saga – July 27: http://mamasaga.blogspot.com/2007/07/you-dont-have-to-have-lump-to-have.html  

Mamanista! – July 27: http://www.mamanista.com/2007/07/friday-playgroup-july-27-2007.html 

The Motherhood – July 30: http://www.themotherhood.net 

Sob’ah My Soul – July 30: http://sobahmysoul.blogspot.com/2007/07/inflammatory-breast-cancer.html  

Full Plate – July 30: http://fullplate321.blogspot.com/2007/07/one-in-eight-is-too-many.html  

T With Honey – July 30: http://twithhoney.wordpress.com/2007/07/30/there-isnt-always-a-lump/  Hank and Willie – July 29: http://hankandwillie.wordpress.com/2007/07/29/breast-cancer-not-just-for-lumps-anymore/ Eastowners – July 30: http://beta.eastowners.com/?p=149 

I Speak of Dreams– July 30: http://lizditz.typepad.com/i_speak_of_dreams/2007/07/inflammatory-br.html  

The Magpie Files – July 30: http://magpiefiles.blogspot.com/2007/07/there-is-much-to-be-done.html 

4 and Counting – July 30: http://4andcounting.blogspot.com/2007/07/need-to-know.html 

iVillage message board – July 30: http://messageboards.ivillage.com/n/mb/message.asp?webtag=iv-ppbreastfeed&msg=111256.1&ctx=0 

Oh Amanda – July 30: http://ohamanda.wordpress.com/2007/07/30/calling-all-women/ 

Slurping Life – July 30: http://slurpinglife.typepad.com/slurping_life/2007/07/because-this-is.html  

Luna & Foo – July 30: http://lunaandfoo.blogspot.com/2007/07/no-lump-required.html  

And A Mom – July 30: http://andamom.com/?p=130 

Lessons from the Scrapbook Page – July 30: http://realwomenscrap.typepad.com/scrapbook_lessons/2007/07/tackling-a-thre.html#comments  

Undone Lady – July 30: http://undonelady.wordpress.com/2007/07/30/inflammatory-breast-cancer/ 

Good Things Comin’ – July 30: http://goodthingscomin.livejournal.com/81457.html 

A Million Paths – July 30: http://sofarsogood.typepad.com/sofarsogood/2007/07/a-plagiarized-p.html  

Living a Full Life – July 30: http://living-a-full-life.blogspot.com/2007/07/in-spirit-of-my-last-post.html  

Case Notes from the Artsy Asylum – July 30: http://susanreynolds.blogs.com/artist/2007/07/you-dont-have-t.html  

Not Exactly A Princess – July 30: http://notexactlyaprincess.blogspot.com/2007/07/breast-cancer-just-because-you-dont.html 

MemeGRL – July 30: http://memegrl.blogspot.com/2007/07/and-now-for-important-public-service.html  

Pumpkin Fairies – July 30: http://pumpkinfairies.blogspot.com/2007/07/need-to-read-this.html  

In Full Bloom – July 31: http://hayesvision.com/allblogs/Kim/?p=123  

Bending the Twigs – July 31: http://bendingthetwigs.blogspot.com/2007/07/not-to-panic-anyone-but.html 

The Health and Life Mixing Bowl – July 31: http://mhlcoaching.typepad.com/the_health_and_life_mixin/2007/07/a-must-read-for.html  

Fenicle – July 31: http://fenicle.com/2007/08/01/inflammatory-breast-cancer-doesnt-have-a-lump/ 

A Not So Desperate Housewife – July 31: http://nsdesperatehousewife.blogspot.com/2007/08/something-you-need-to-know.html  

Jill of all Trades – August 1: http://jillofalltrades.wordpress.com/2007/08/01/you-don%E2%80%99t-have-to-have-a-lump/  

Ranting Radish – August 1: http://amy-and-chris.blogspot.com/2007/08/team-whymommy.html  

Miguelina – August 1: http://diary.blogs.com/the_diary_of_a_reluctant_/2007/08/now-i-know—an.html  

The Life and Times at One Carbon Hill – July 31:  http://onecarbonhill.blogspot.com/2007/07/it-hits-close-to-home.html  

Virtual Fitness – July 31: http://cybertrainer.blogspot.com/2007/07/you-dont-have-to-have-lump-to-have.html 

Part-time Mommy – July 31: http://part-timemommy.blogspot.com/2007/07/big-3-year-old.html 

Love, Family, and Life – July 31: http://lovefamilylife.blogspot.com/2007/07/you-dont-need-lump-to-have-breast.html 

Gift of Green – July 31: http://giftofgreen.blogspot.com/2007/07/stealing-post.html 

Third Times a Charm? – July 31: http://blankenshipkids.blogspot.com/2007/07/me-and-my-big-syringe.html  

Simply Serina – August 1:  http://simplyserina.wordpress.com/2007/08/01/womens-health-alert/  

I Can Fly, Just Not Up – July 31: http://icanflyjustnotup.blogspot.com/2007/07/and-now-word-from-whymommy.html  

A Mom, A Blog, and the Life In Between – July 31: http://tere-tere.blogspot.com/2007/07/word-about-inflammatory-breast-cancer.html  

Thinking Out Loud – July 31:  http://gammavh.blogspot.com/2007/07/hidden-breast-cancer.html  

Fenicle – August 1: http://fenicle.com/2007/08/01/inflammatory-breast-cancer-doesnt-have-a-lump/  

High Tech Parent – August 1: http://hightechparent.blogspot.com/2007/08/second-life-conference.html  

A Not So Desparate Housewife – August 1: http://nsdesperatehousewife.blogspot.com/2007/08/something-you-need-to-know.html  

Sanne on the Move – August 2: http://sanneonthemove2.blogspot.com/2007/08/why-im-on-team-whymommy.html  

Woman with No Regrets – August 2: http://womanwithnoregrets.blogspot.com/2007/08/inflammatory-breast-cancer.html 

Cerbonan – July 31: http://cerbonan.wordpress.com/2007/07/31/kanker-payudara/  

Life’s Blessings – July 30:  http://stormsinlife.wordpress.com/2007/07/30/breast-cancer-awareness/  

Up in the Night: — August 2: http://stormsinlife.wordpress.com/2007/07/30/breast-cancer-awareness/ 

Anna’s Versitile Writing – August 2:  http://www.annasversatilewriting.com/ 

They Call Me Mommy – August 2:  http://4theycallmemommy.blogspot.com/2007/08/inflammatory-breast-cancer.html 

SuperblondGirl – August 2: http://superblondgirl.wordpress.com/2007/08/02/holy-breast-cancer-batman/ 

Wheels on the Bus – August 3:  http://wheelsonthebus.wordpress.com/2007/08/03/the-shadows-they-cast/  

Twitter/Susan Reynolds – July: http://twitter.com/susanreynolds 

Living a Full Life – July 29: http://twitter.com/susanreynolds  

Blessed Nest – July 30: http://blessednest.blogspot.com/2007/07/inflammatory-breast-cancer.html 

Slurping Life – July 30: http://slurpinglife.typepad.com/slurping_life/2007/07/because-this-is.html 

Colloquium – July 30 (metapost): http://jhsiess.com/2007/07/30/monday-candle-moment-whymommy-all-fighting-cancer-and-those-who-love-them/ 

Sing for Joy – July 30: http://jmeg.typepad.com/sing_for_joy/2007/07/im-40-years-old.html 

Mom Tu-Tu – July 30: http://momtu-tu.blogspot.com/2007/07/inflammatory-breast-cancer.html 

A Slice of Life – July 26: http://luannemarie.blogspot.com/2007/07/whymommyone-of-many-brave-woman.html 

Everybody Loves Raymond, Well, Some Maybe – July 29: http://dispatchmom.blogspot.com/2007/07/spread-word.html  

Mamalang – July 30: http://mamalang.blogspot.com/2007/07/team-whymommyyou-dont-have-to-find-lump.html 

LaurentFiles – July 31: http://laurentfiles.blogspot.com/2007/07/sending-you-elsewhere.html 

Tales from a Working Mommy – July 31: http://mommahutch.blogspot.com/2007/07/stolen-blog-post-please-read.html 

Bending the Twigs – July 31: http://bendingthetwigs.blogspot.com/2007/07/not-to-panic-anyone-but.html 

Around the Island – August 1: http://aroundtheisland.blogspot.com/2007/07/wfmw-inflammatory-breast-cancer.html 

Momish – August 1: http://momish.squarespace.com/blog/2007/7/31/pilfer-for-a-cure.html 

Monilark’s Xanga Site – August 1: http://www.xanga.com/monilark/607573115/yu-dont-have-to-have-a-lump-to-have-breast-cancer.html 

Vivacious Vegan – July 28: http://vivaciousvegan.blogspot.com/2007/07/you-dont-have-to-have-lump-to-have.html 

Cease Cows, Life is Short – July 28: http://www.ninotchkabeavers.com/  

Mommy’s Getaway Blog – August 2: http://mommysgetawayblog.blogspot.com/2007/08/some-very-scary-stuff.html 

Dky Bar and Grill – August 2: http://dkybarandgrill.blogspot.com/2007/08/i-lifted-this-from-amp-and-would.html 

The Misadventures of Danger Doll – August 2:  http://dangerdoll.blogspot.com/2007/08/serious-blond-its-after-your-breasts.html 

The Ramblings of a Woman – July 28: http://quiskaeyaskorner.blogspot.com/2007/07/public-service-announcement-story-of.html 

Only the Best that I Can Be – August 2: http://pleasestopcrying.blogspot.com/2007/08/you-dont-have-to-have-lump-to-have.html 

DottyCookie – August 1: http://dottycookie.blogspot.com/2007/08/if-you-read-nothing-else-today.html 

It’s Really Me – July 30: http://its-really-me.blogspot.com/2007/07/read-this.html 

Our Whole World in His Hands – And Other Adventures – August 2: http://riobello.typepad.com/adventures/2007/08/thankful-thursd.html 

The Coffee Stop – August 2: http://riobello.typepad.com/adventures/2007/08/thankful-thursd.html 

Two of Most Things – August 1: http://maisiella.typepad.com/two_of_everything/2007/08/breast-cancer-a.html 

The New Caleb Nation – August 1: http://calebnation2.blogspot.com/2007/08/important-service-announcement.html 

Jenster’s Mustings – August 1: http://jenstersmusings.blogspot.com/2007/08/getting-word-out.html  

Well-Rounded – August 1:http://zaftig75.blogspot.com/2007/08/you-dont-have-to-have-lump-to-have.html  

The Merits of the Case – August 2: http://blawgcoop.com/lawmom/2007/08/inflammatory_breast_cancer.html  

On the Horizon – August 2: http://hopefulspirit.com/2007/08/02/thankful-thursday-community/ 

Four Plus Four Equals Ten – August 3: http://fourplusfourequalsten.blogspot.com/2007/08/breasts.html 

Two boys and An Angel – August 2:http://twoboys4me.blogspot.com/2007/08/for-those-that-havent-already-seen-this.html  

Just a Mom, That’s More than Enough – August 2:http://just-a-mom-thats-more-than-enough.blogspot.com/2007/08/too-important-to-skip.html 

Pink Purl – August 2: http://pinkpurl.typepad.com/pink_purl/2007/08/krystals-auctio.html 

Raising Mustard Seeds – August 2: http://raisingmustardseeds.wordpress.com/2007/08/03/breast-cancer-awareness/ 

The Dana Files – August 3: http://thedanafiles.com/2007/08/03/continuing-education-inflammatory-breast-cancer/  

Vintage Heaven – August 3:  http://vintageheaven.blogspot.com/2007/08/if-you-read-nothing-else-please-read.html 

K&the3ds – August 4: http://kandthethreeds.blogspot.com/2007/08/if-you-are-one-who-prays.html 

They Call Me Mommy – August 2: http://4theycallmemommy.blogspot.com/2007/08/inflammatory-breast-cancer.html  

Angry Pregnant Lawyer – August 4: http://angrypregnantlawyer.blogspot.com/2007/08/who-ive-been-thinking-about.html 

Cheese Party – August 4: http://cheeseparty.blogspot.com/2007/08/steal-this-post.html  

The Cheese Says … mmmmm – August 4: http://cheesepartyreviews.blogspot.com/2007/08/steal-this-post.html 

The Kelson Krew – August 1: http://kelsonkrew.blogspot.com/2007/08/ibc-real-muther-fucker.html

The Further Adventures of Spacemom – August 1: http://spacemom.net/adventures/2007/08/01/psa-breast-cancer/ 

Snapshot Chronicles – August 4: http://snapshotchronicles.com/2007/08/04/a-word-about-breast-cancer/  

Marketing Roadmaps – August 4:  http://snapshotchronicles.com/2007/08/04/a-word-about-breast-cancer/  

Genuine Blog – August 4: http://www.genuineblog.com/?p=2274  

Natalie’s Chicken Blog – August 4: http://www.chickenblog.com/2007/08/please-share-this-post-you-may-recall.html 

A Bead a Day – August 4: http://bettejosbeadcreations.blogspot.com/2007/08/this-is-whymommy.html  

The Pea Chronicles – August 4: http://thepeachronicles.blogspot.com/2007/08/very-important-read-for-all-women.html 

Just Another Mommy Blog – August 4: http://tracey-justanothermommyblog.blogspot.com/2007/08/pass-on-little-love.html 

Kris Lizard’s Journal – August 4: http://krislizard.livejournal.com/ 

Linkateria – August 4: http://linkateria.blogspot.com/2007/08/you-dont-have-to-have-lump-to-have.html 

Choose Life!  – August 5: http://choose-life.us/2007/08/05/spreading-the-word-about-inflammatory-breast-cancer/

Thank you all.