Wednesday, June 9, 2010

The Internet, the Information Age, Knowledge is Power

This blog is intensely personal, but if you're a woman, or you love a woman, you might want to take note...

With the Daphne finalists announced, my house remodel complete, I've been deep in revisions and now cleaning up my manuscript. But life doesn't swirl in its own orbit or at its own time, while you're working toward your goal. As the cliche goes. Life happens.

While devoting the majority of my time to my 2010 Golden Heart finalist manuscript, I noticed what I thought was a bug bite, on my right breast. I have a wonderful goals group, founded by Amy Atwell, called Writing GIAM. Her goal-setting passion has evolved into four groups and I happen to love the loop that I'm on. These women can be kind, funny and task masters when they have to be. We also could be considered an international group, with members in Canada, Europe, England, South Africa, Australia and the rest in the U.S. It's understandable that we have access to a wide range of knowledge and expertise.

Call this group your very own condensed version of Wikipedia.

Anyway, I asked my friends--yes, you can't belong to this group--without calling them friends, about this bug bite on my breast. I'd been doing yard work, too, so it was only natural that's where I assumed I got it. I wanted their thoughts on how I should treat it.

These brilliant women never mince words, we also have a breast cancer SURVIVOR on this loop. So to us, it's intensely relevant and in our face. The majority responding to my post, said, "Go to an ER. Now. And then Therese Walsh, founder of Writer Unboxed and the RITA-nominated author of The Last Will of Moira Leahy, sent me a video. I looked at it, and I appreciated being forewarned. I also received wonderful private reassuring posts from these ladies, in particular, my buddy in Louisiana, whose son is a doctor. I've done my research on Inflammatory Breast Cancer, which is the purpose of this blog.

Not to scare you but to educate you, it's rare, it's not detectable with a simple mammogram and needs further evaluation--by a diagnostic mammogram and ultrasound. My doctors have for the most part eased my fears. But...the nurse practitioner where I receive my gynecological evaluations had never heard of it. Hence, my reason for this post.

The Internet can be evil, it can alarm you unnecessarily. I'm not alarmed nor do I want you to be. I do want you to know that this certain type of breast cancer exists. Or it might indeed be a simple bug bite. I'm full of cliches today so I'll leave you with this one. Knowledge is power. I now return you back to your writing. ~ All best.

http://www.cancer.gov/cancertopics/factsheet/Sites-Types/IBC

Addendum to my post from yesterday. When learning about cancer, please consider heredity. Award-winning Author Deb Stover had this to say about IBC and related cancers:

Thanks for posting this, Donnell. I think you should change "I probably"
will change doctors to "I WILL" change....

My mother-in-law died from IBC at 49, after fighting it for two years. In 2000, the University of Colorado included my late husband in a study involving the sons of mothers who'd had IBC, and were diagnosed with very early colorectal cancer. Dave was only 44 when first diagnosed with Stage III--a tumor so large the doctor said it had to have been growing at least 7 years. Gosh, 37 is a lot younger than the 50 they recommend initial screening for colon cancer. Hmm... Ironically, he fought the beast until 3 weeks beyond his 50th birthday.

Early detection is everything in cancer treatment. My brothers-in-law get a colonoscopy reminder in their birthday cards every year. ;-)

Back to your regularly scheduled program.

Thanks, Deb. I am paying attention. To learn more about Deb, her books and her personal story, check out www.debstover.com

20 comments:

magolla said...

Okay, I find it very scary that a nurse practioner for an OB-GYN didn't know about this . . . and I did. I had seen something on a news show about a year ago on this topic. I hope this kicks her butt into doing a little more research for keep her credentials current!
Sorry, but this really, really bothered me.

Donnell said...

Yep, me too, Margaret, which is why I most likely will change doctors. If we can't trust our medical professionals to be informed, who can we trust?

Cindy Carroll said...

I'm with Margaret. I find it scary that a nurse practioner didn't know either. I still need to watch that video Therese sent.

Mary Marvella said...

I hope that nurse headed to a research source to learn everything she could about IBC.

My daughter has a recently diagnosed condition, so there are a lot of medical experts who know little or nothing about it.

Donnell said...

Mary, hugs to you and your daughter. I pray she's receiving a favorable prognosis.

Therese Walsh said...

I echo Margaret, Cindy and Mary: How could the nurse not have heard of IBC? More importantly, I'm so glad you're taking care of you, and that some of your other doctors are taking steps to make sure you're going to be okay. (And thanks for the shout-out, Donnell!)

Edie Ramer said...

I'm a BC survivor too. I have heard of IBC. Now I pay attention to any mention of cancers, especially of the breast. The good thing is that lately I've been hearing about new cures for different cancers. So Yay!!!!

I think it's a good idea you're thinking of changing doctors. IBC isn't that obscure. Like Margaret said, she'd heard about it a year or so ago. I think that's when I heard about it too.

Annette said...

Donnell, thanks for posting this. I, too, have heard of IBC and am stunned that a medical professional had not. Shame on her.

Melanie said...

Excellent blog, Donnell. I'm betting you opened some eyes today.

Sylvia said...

Excellent post. You said it right with your last line--knowledge is power. I'd add one more thing--don't neglect regular checkups.

Viola Estrella said...

I'm glad you're okay, Donnell. What a scare. Good for you for having the sense to get it checked out right away. And hurray for good friends too. Glad they had your back.

Karin* said...

Donnell, first, I'm glad you're ok. Second, I am aghast that a gyno NP had never heard of IBC!

If our health care providers are ignorant then we must all do what you are doing, spread the word!

Gwynlyn MacKenzie said...

I've heard of this, Donnell, and seen a very graphic and informative video, but can't imagine how frightened you must have been. Gives me the willies just thinking about it!

And the nurse/practitioner had never heard of it? How freaking scary is that? Glad the doc was better informed.

I hope all is well, and that your revisions are proceeding apace.

Donnell said...

Thanks everyone for letting me share my story. I appreciate your concern, but I'm fine. What I would ask is that you tell your friends about IBC, and Sylvia's right, get your mammograms and do self-examinations. Also, men aren't immune. I'm glad we're talking about this. Thanks for stopping by!

donthangupthequill said...

Thank goodness it was nothing, and yay for education. Awareness of self is very important!

-Abigail

Liz Lipperman said...

First off, thank the Lord, it was just a bug bite. Every winter I get a rash(dry skin) on my boobs. My dermatologist checked it out really well once thinking it might be IBC. Apparently, a slight rash and itching are two of the symptoms.

In this day and age, I run to the Internet with all my medical questions (and I'm a medical person) because there have been so many advances made since I studied way back when.

I'll echo everyone's sentiments and say I'm glad you're changing doctors. That's like a pediatrician's NP saying she didn't know about roseola.

Great informative blog, Donnell.

Audra Harders said...

Donnell, I'm sorry you had to go through the stress of medical issues on top of the Daphne, house remodel, your own writing, housework, etc.

The list goes on and on, doesn't it?

Thanks for the heads up on IBC and I agree with you, don't leave your future in the hands of overworked professionals. We need to take charge of our own lives because many will suffer with us from our needless neglegence.

Chill out, babe! You're in my prayers!

Marilyn Brant said...

Donnell, thanks for sharing this with us--awareness is so important and I hadn't heard much about IBC before. Most of all, I'm glad you're all right and hope that the rest of your year will bring you only good news... Fingers crossed for your GH book!

Keely Thrall said...

Donnell - thanks for this post.

Speaking of "fear on the internet" - I learned about IBC via a "send this to everyone" email. I went to www.snopes.com, my go to place to learn whether something is true or an urban legend and was horrified to see the truth of IBC confirmed.

Cancer is such a pernicious SOB. My prayers and positive thoughts to all who battle it.

Debra E Marvin said...

This was new to me. Thank you for sharing and informing us, Donnell, though I'm sorry you had that time of concern.