AUTHOR: Marty, a.k.a. canape TITLE: She's not sick, she's a survivor DATE: 9/23/2007 01:50:00 PM ----- BODY:
Edited below.

This is one of those posts that has little tidbits of thoughts that have been stuck in my throat for awhile now. Things that I would write in book and close the cover on, but haven't been willing to put out here. It seems like time though. Time to unclog the drain a little.

Whymommy is educating again. She has written a post about seeing a group of colleagues for the first time since her diagnosis, and the different responses she received from people. What struck me the most was the interpretation that someone inquired of the chemo, "Is is working?" Just like that. Blunt and intrusive.

That is how she has taught us to see it. This person was another scientist, full of curiosity driven by a penchant for research. Not necessarily a concern for the person standing right there in front of them.

In her narrative, you learn people's responses that were comfortable for her, and the ones that left her hurt and angry. Feeling more like a project than a person. We learn more about how to treat those we encounter who are fighting cancer in the present.

Sometimes though, I want to ask those questions. I want to know if it's working. I want to know what the doctors are saying.

I want to know how my friend is doing in her battle.

More than that though, I want to know how my friend is doing in her life.

There is an elephant in my room. The elephant is the fact that IBC is a killer cancer. The elephant is that more women don't survive than do. And I walk around this elephant, kicking it as I pass by, wishing that the facts weren't staring me in the face so that I could never have even a fleeting doubt.

Deep down, though, the facts don't have an impact on my belief that Whymommy will beat this. I truly believe that when all is said and done, we will have nothing but anniversaries to celebrate and years to add to the length of time she has been a survivor.

And I hope adding to the length of time that she is an advocate for IBC survivors.

Because there is something about all of this that bothers me. It isn't easy to talk about because I'm so busy trying to sound positive all the time.

The latest issue of Parents brought it to a head though, and I'm going to go ahead and say it.

People don't want to hear about Inflammatory Breast Cancer because it isn't pretty.

I don't want to diminish how happy I am that Goody Blog featured Whymommy and IBC recently. I am so happy and grateful that they did that, and then got part of that information in print as well. Many many thanks to them. Their interview with her is wonderful.

What bothers me is that in the print issue of Parents, there is no mention of IBC whatsoever, just breast cancer in the generic sense of the words. If someone is intrigued enough to take their magazine, go to their computer, and to then look up Toddler Planet, then they will learn. They will learn that this isn't an ordinary breast cancer fight. They will learn that there was no lump. No family history. No rhyme or reason to why it has struck this woman.

Guy, my ever present truth bleeder, said that I really shouldn't be surprised. That Parents didn't want to print the complete truth that is IBC right next to the cute picture of the smiling baby wearing the "Save the TaTa's " onesie. It's frightening and their readers don't want to be full of "that could be me" syndrome.

But why couldn't they at least spread the word that there doesn't have to be a lump?

Something else that bothers me is that when I asked Guy why there wasn't more research being done on IBC, he told me I didn't want to hear that answer. I pressed him further. He told me,

"The fatality rate is too high for companies to invest their research funding in."

Well isn't that just perfect? They won't invest because the chance of their success isn't high enough. Women continue to die because no one will do the research. How then, do we change all of that?

That's why I think it is up to us. That's why I think we have to acknowledge that every single solitary day that Whymommy and Imstell continue to survive, they are also offering the hope that maybe we can change the climate. Get someone to believe that IBC is worth investing time, money, and research in.

Get someone to understand that it can be beaten, and that IBC survivors are worth investing time, money, and research in.

We have to do this. We have to change the climate. Make the winds blow funding and determination into finding a sure cure or even better yet, a prevention for IBC.

While I'm up here on my soapbox, I've got one more thing to address.

Whymommy doesn't want for people to stare at her like she is sick. The fact of the matter is though, she looks like someone who is undergoing chemo. And after my visit, I was racked with guilt at the fact that I saw her as a someone who was undergoing chemo. As if I was going to have some magic power to see her with all of her energy and hair right there in front of me.

I cried for a long time after leaving her house. I felt like I had let her down.

What I understand today, finally, is that we see what we see. It is in how we choose to interpret what we see that is important.

So I say this. The next time you see someone who is obviously undergoing chemo, see them for what they are. They aren't a sick person. They are a fighter. They are a survivor.

This is what a survivor looks like:














This is a picture of strength, courage, fight, determination, and survival. One that I totally stole off of her blog, but hey. She should be glad I'm not posting the one I found in my boxes of her getting ready for 10th grade homecoming.

Whymommy, so while I get scared, and I know you do too, I don't see you as sick. I see you as a survivor. I see you as the friend you have always been. With easier hair maintenance.

I don't want the fact that I want to know how you are doing, emotionally, physically, even medically speaking, to diminish the normalcy of our friendship. I'm also going have a slew of parenting questions in January as well. Hell. I just ask a lot of questions. I suppose it could get annoying.

There are those of us who ask, "How are you?" and really want an answer. Whatever answer you feel like giving at the time, but we are asking because we care.

I'm one of those asking because I care.

Upon further reading of my copy of Parents, I do have to add that they listed some IBC symptoms on page 101. While they still never mentioned IBC or that you don't have to have a lump to have breast cancer, they did tell women to go to their doctor if they noticed changes in their breasts. Just saying. You know, to be fair to them and all.

Also, I'm back to being positive, especially for Whymommy. I didn't write this to promote fear or focus on the negative. I just want for IBC to stop being ignored. Bring it out into the light.

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----- COMMENT: AUTHOR:Anonymous slouchy DATE:Sunday, September 23, 2007 at 3:52:00 PM EDT You are a good person and a good friend. And all of the questions you ask here are worthy and tough. Some of them have flitted through my brain, but I've tamped them down.

You're courageous to ask.

And WM is a survivor. Her attitude ROCKS. ----- COMMENT: AUTHOR:Anonymous Candygirlflies DATE:Sunday, September 23, 2007 at 5:02:00 PM EDT Amen.

AMEN!!

Beautifully, beautifully written.

And now, I am going to sit down and write to an editor at "Canadian Living" magazine, because they DID have an article about a woman with IBC this month... but they, too, omitted to tell women that YOU DON'T HAVE TO FIND A LUMP TO HAVE BREAST CANCER.

We must all fight for knowledge, as well as adequate resources for research to find a cure.

Thank-you, and thanks also to Whymommy, for being a really big and important part of that fight.

xoxo CGF ----- COMMENT: AUTHOR:Anonymous Mamma DATE:Sunday, September 23, 2007 at 8:25:00 PM EDT Oh C!!

I'm glad you got this out. I know this has been hard. You know my inbox is always open when you need it. It was an honor the first time you trusted me.

Your writing about WM (and her keeping a blog) paints her as a whole person to me--not just someone with cancer. I feel like I know her and yet we've never met.

IBC is scary and awful. Anything the two of you cook up to get the word out more, you know I'm right behind you.

Lots of love tenderheart!! ----- COMMENT: AUTHOR:Anonymous FENICLE DATE:Sunday, September 23, 2007 at 9:53:00 PM EDT By the way....I bought my WHYMOMMY t-shirt and it's a lovely pink.

It ROCKS!!!! ----- COMMENT: AUTHOR:Anonymous FENICLE DATE:Sunday, September 23, 2007 at 9:53:00 PM EDT You hit the nail on the head. My cousin (who I've written about on my blog and I think you've read) had IBC and lost her battle.
(http://fenicle.com/category/stephanie/)

She went searching for treatments & research & trials...and had a hard time dealing with the reality you mentioned here.

She found great strength in a non-profit group - IBC Research
http://www.ibcresearch.org/
who were the only ones she could find that were striving to find a cure!

I personally donate to them and would encourage anyone else that has the means to do so as well. ----- COMMENT: AUTHOR:Anonymous Bubblewench DATE:Monday, September 24, 2007 at 9:22:00 AM EDT Awesome post. ----- COMMENT: AUTHOR:Anonymous T with Honey DATE:Monday, September 24, 2007 at 10:03:00 AM EDT You have to be the best BFF ever!!

And if I can figure out a way for corporations to care about people instead of keeping their shareholders happy by making the highest profits possible I'll share the secret with you.

Hmm... maybe that's the solution. We pool our money to make Team Whymommy a major shareholder in a medical research company and make IBC the #1 priority. ----- COMMENT: AUTHOR:Anonymous Bon DATE:Monday, September 24, 2007 at 2:21:00 PM EDT dude, you just blew my mind. i only read the Parents' Magazine excerpt as linked by Whymommy, and i assumed the rest was there.

i grieve our ostrich nature. i just don't get it. and i think i'll go see if i can email Parents' Magazine and add to the chorus.

maybe if enough of us do, they'll do a reprint, with Whymommy's actual message...cause Jeebus, what a slap to her to cover her without covering what she's busting her tired ass to say, to get out there.

tears in my eyes, this makes me so angry. ----- COMMENT: AUTHOR:Anonymous Ally DATE:Monday, September 24, 2007 at 4:41:00 PM EDT I agree with JJ that Parents mag could use a copy of this post. Well said, on all accounts, Canape. It's okay to rant and to be scared and angry and frustrated and confused. It's real. You are such a good friend to WM; I am sure that when you say "how are you doing" it feels worlds away from the ex-co-worker at the conference who asked "is it working." ----- COMMENT: AUTHOR:Anonymous Jennifer, Playgroups Are No Place For Children DATE:Monday, September 24, 2007 at 5:07:00 PM EDT Great post.

Whymommy has a great friend in you. ----- COMMENT: AUTHOR:Anonymous Clifford DATE:Monday, September 24, 2007 at 8:41:00 PM EDT I'm just hoping YM has come up with a nifty catch phrase for the final day of cancer, right as the last dying IBC cell succumbs.

Something like "hasta la breasta" or "take off eh?" would be cool, although she'll need some mirror-lensed Oakleys for the first one. Knowing my buddy, she'll probably reference something with a celestial body or a NASA mission, though. But it will still be cool. ----- COMMENT: AUTHOR:Anonymous whymommy DATE:Monday, September 24, 2007 at 9:01:00 PM EDT You know, the Deep Impact mission blew a hole in a comet, Clifford ... if we can do that, surely chemo can blow a hole in this cancer I have!

Canape, I'm as mad as you are. About it all. It's okay to say it. It's okay to ask.

How do I feel? Well, today I'm having hot flashes. All day. But my energy is coming back, and the treatments are working to some extent.

We'll just have to see whether they're working enough. But that's something none of us can know.

The question is, what can we DO about it? ----- COMMENT: AUTHOR:Anonymous The Farm House Kids DATE:Monday, September 24, 2007 at 10:55:00 PM EDT C.,

That was so well said and so obvious you truly love your friend, a whole woman, who is surviving this and will triumph as a survivor!

Yes, we need to get the word out! We need to form committees and we can research editors of women's magazines and tell WM's story. We can contact Oprah, Dr. Phi, The View, The AP, The Today Show, GMA and anyone that will listen. If we ask everyone that's on WM's Team to send a letter to their own local newspaper and we link back to a newly created blog that supports this cause, we will be seen. Our voices will ring loudly across this nation.

To do this, will take action on everyone's part and it will get this story out.

Women have power! Our voices can be heard~ We can stand united around this nation in support of not only WM, but to all women with IBC.

Little stories become big stories when small groups unite and become big groups. Susan B. Komen was one woman. A woman with breast cancer. Even though she lost her battle, her story started somewhere.

WM is going to be a survivor of IBC and she will tell her story! Like slouching mom says, "Her attitude ROCKS."

Let's do more and make a plan to spread the word across this nation from coast to coast!

We need a plan and our sponsors will come. They will join us on behalf of the woman that are crying out with loud voices that demand to be heard ~

This is the age of internet and I think we can sweep this nation in a short period of time, and be heard. We need to not only sweep the blogs, but get this story into circulation both in print and on TV.

Count me in! I am volunteering to do whatever needs to be done~

Tanya ----- COMMENT: AUTHOR:Anonymous Lisa DATE:Tuesday, September 25, 2007 at 12:04:00 AM EDT Yeay for YOU. This is one of my favorite posts of yours.

And WM is an amazing woman. She IS going to kick some butt.

But yes, its so very heartbreaking to see a dear friend go through chemo. I watched a friend of mine go through it as well... But yes, you know that WM is still the same woman she was before the diagnosis. She's just spending less money on conditioner these days. ----- COMMENT: AUTHOR:Anonymous dawn224 DATE:Tuesday, September 25, 2007 at 11:11:00 AM EDT Amen.

JJ is right - this needs to be sent.

Full support for you coming from here. ----- COMMENT: AUTHOR:Anonymous Clifford DATE:Tuesday, September 25, 2007 at 2:27:00 PM EDT "But yes, you know that WM is still the same woman she was before the diagnosis. She's just spending less money on conditioner these days."

bwwaahaha. My kinda comment. I shall now chuckle. :D ----- COMMENT: AUTHOR:Anonymous Kathy's Surprise Party DATE:Tuesday, September 25, 2007 at 7:30:00 PM EDT Wonderful post. I always want to know too so thanks for asking. ----- COMMENT: AUTHOR:Anonymous Oh, The Joys DATE:Tuesday, September 25, 2007 at 10:13:00 PM EDT I am struck most (which is hard to say given such an intense and important post) by how hard it must be for you to want to talk with her about the fear of losing her and to not feel able to.

That is hard going, Canape.

Sending you love. ----- COMMENT: AUTHOR:Anonymous Jessica @ A Bushel and a Peck DATE:Thursday, September 27, 2007 at 9:26:00 PM EDT I subscribe to Parents Mag, and read the article and was surprised too. I think sending this post is a great start--I'll be emailing them as well. Its too important to let it go. And I am 100% with Tanya's comment--it is possible for a group to make their voice heard--and I am happy to help in any way I can to get this message out. Any thing I can do, I will. My blog doesn't have that much traffic yet, but there are so many venues we could turn to--if we all raise our voices, people will hear. ----- COMMENT: AUTHOR:Anonymous Lou.Jamie DATE:Friday, September 28, 2007 at 9:18:00 AM EDT Wait, where did you get your pink WhyMommy t-shirt, fenicle? I want one! ----- COMMENT: AUTHOR:Anonymous Marty, a.k.a. canape DATE:Friday, September 28, 2007 at 9:30:00 AM EDT Lou.Jamie -

You can get a Team WhyMommy t-shirt on cafepress.com. Just go search for the shop name "canapesun."

We aren't raising funds with them as they are being sold at cost, but we are raising awareness! ----- COMMENT: AUTHOR:Anonymous Magpie DATE:Friday, September 28, 2007 at 10:15:00 AM EDT Lovely post. Strong, necessary message. ----- COMMENT: AUTHOR:Anonymous Amanda DATE:Friday, September 28, 2007 at 12:17:00 PM EDT Statistics and spirits don't mesh, contradicting one another. We must each believe in exceptions when our hearts and souls tell us to, regardless of statistics. It is what makes us human, what nourishes our spirits. So you keep going with these posts believing in the Whymommys of the world. And we'll talk about the absence of lumps and the vitalness of hope. Always. ----- COMMENT: AUTHOR:Anonymous ohgrammy DATE:Sunday, September 30, 2007 at 9:16:00 AM EDT A perfect post, saying so much that others wish they had the words to say. . . .
I totally agree that PARENTS missed the point and let us down by not identifying IBC in the October coverage of breast cancer. The list of symptoms on page 101 is not enough. We need to insist that more is said.
Canape, please know that your visit to WhyMommy gave her spirits a tremendous lift! It was a gift that only you could give her, as her old and dear friend, and you did. No tears, no regrets. ----- COMMENT: AUTHOR:Anonymous Anonymous DATE:Saturday, December 12, 2009 at 1:24:00 PM EST Hello !.
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