Turning awareness to action

January 12, 2010

There are as many ways to fight cancer as there are types of cancer. You know that. You’ve already been touched by cancer, and your sharp, sharp memories are in many cases what moved over 35,000 of you to read, and 350 of you to comment on my last post. Your words are powerful. As I read the comments, I felt your pain, your frustration, and your triumph in overcoming the wounds left by this beast.

You spoke up, and said YES, I felt this way too. You spoke out and said NO, I loved someone with cancer, and she would have thought this fun. You told us YES, BUT I checked myself for breast cancer.  Awesome. But there was one more comment that was left over and over again:

What action do you propose? I would love to be action and not awareness oriented, but I don’t know how to do that aside from walks and fund-raising. (ShannonP)

Walks and fundraising are fantastic, Shannon.  They’re a wonderful way to show support and raise money to fund tests, provide treatment, and find a cure.  But there were so many other ideas in the comments yesterday — actions that I need to remember too are important, and to do more often.

I challenge everyone reading this today to try one or more of these ideas that readers left.  Comment today, telling us which idea appeals to you, and if you can, please come back and comment again, telling us what you did.

1. Donate. It doesn’t have to be about breast cancer. Donate to your favorite cancer-fighting organization. I like the American Cancer Society and the Inflammatory Breast Cancer Research Foundation, because they work to raise awareness AND fund research to find what causes cancer.

2. Educate. Take a moment and share what you’ve learned.  Call a friend and ask if she’s done her monthly self-exam.  Blog about cancer, and what action you’ll be taking to honor those who we have lost (Oh, Andrea, Lisa, Jenni, Katie, Ursell, and Sue… I miss you and I wish you were here to help).  Write a letter to the editor about the kind of cancer that moves you, and what you thought of the meme.  Post something on your FB page that does raise awareness.  You know your friends.  You know what that might be.

3. Advocate.  If you’ve ever said, “Congress should do something!” you can convince them to do it.  Join the Cancer Action Network for up-to-date information on what bills are pending in the U.S., and how you can take action.

4. Volunteer. Join the Avon Army of Women fighting breast cancer by participating in studies as simple as a questionnaire… and critical in determining the big questions, like who gets breast cancer, and what treatments should be standard.

That’s it.  Donate. Educate. Advocate. Volunteer.  Pick one or all, and I’ll meet you back here to hear what you’ve done to fight cancer.

Which one are you going to try?  Which one have you done lately?


Guest post

October 21, 2009

I’m over at Workout Mommy’s place today — if you’d like a guest post on IBC for your blog, drop me a line and I’ll write one just for you too (or you can cut-and-paste the one below.  It’s yours, no problem, just please link back to me and let me know you did).  It’s still important to get the word out — as much as I’d like to move on and forget about it, it’s not like people have STOPPED getting IBC since I finished my treatment.  In fact, an estimated 25,000 women have been diagnosed with IBC since I was diagnosed in June 2007, and many have died because they weren’t diagnosed before it had spread too far.  Let’s keep spreading the word — there’s more than one kind of breast cancer, and inflammatory breast cancer is the cancer without a lump.

Inflammatory breast cancer

There’s more than one kind of breast cancer.  Did you know that?  During October, we’re so often flooded with “buy pink” campaigns, and reminders to check ourselves for lumps, that it’s become almost commonplace.  We all know that we should do regular self exams, and we’ve heard it so often that the urgency often fades into the background of children, spouses, laundry, and work.  But did you know that there’s a kind of breast cancer that forms without a tell-tale lump?

It’s called inflammatory breast cancer, and it spreads FAST.  The cancer forms in thin sheets, or in nests, like a bird’s nest of cancer growing inside your breast. There are few external signals or symptoms, and they’re sneaky too, since most of them are similar to mastitis, which many of us have experienced while breastfeeding a baby, or bug bites, or sunburn. But taken together, one or more of these symptoms can signal a dangerous cancer lurking in your breast.

What are the symptoms? Here’s a list, from the IBC Research Foundation:
* Swelling, usually sudden, sometimes a cup size in a few days
* Itching
* Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
* Ridges and thickened areas of the skin
* Nipple retraction
* Nipple discharge, may or may not be bloody
* Breast is warm to the touch
* Breast pain (from a constant ache to stabbing pains)
* Change in color and texture of the areola

There’s a great illustration of these symptoms over at Worldwide Breast Cancer that is guaranteed to be not like anything you’ve seen before….

In my mind, it boils down to this. If you notice ANYTHING DIFFERENT on one breast that’s not on the other breast, please CALL YOUR DOCTOR. Today. Because this cancer moves fast, faster than almost any other cancer, and is deadly. Only 40% of patients survive 5 years after diagnosis.

In the 2.5 years since my diagnosis, I’ve already lost a dozen friends to cancer.  Many of them were moms and bloggers, readers just like you.  They fought hard.  They fought with everything they had.  But cancer treatment is largely still in the experimental stages, and it’s a tough road.  Just to be here today, I had to not only survive cancer, but also survive 6 months of chemotherapy, 7 weeks of daily radiation, 2 surgeries to remove my breasts and ovaries, and a lot of physical therapy to deal with lymphedema, which makes my arm swell in the heat when I step outside (as a lovely side effect of the mastectomy that took all my lymph nodes on that side). It’s been a hard, hard road, but I’m grateful for the chance to be here today, to hug my children, to play their games, to laugh at their knock-knock jokes.

There is joy after cancer.  But first we have to get there.  So please, take a moment, call/email/blog/tweet/update your friends, and SHARE the SIGNS of inflammatory breast cancer with the people you care about. You never know. You might just save a life.


Why we must keep writing.

October 18, 2009

Twitter is all a’twitter.  The blogosphere is buzzing.  It seems that nearly everyone online this weekend is upset over Nic White’s (@mybottlesup) allegations that TSA agents took her son during an airport screening, a response from Eye On Annapolis, the TSA blog, or both.

Readers feel let down.  Bloggers feel betrayed.  There’s more than a little uncertainty — how do we stop ourselves before we RT (retweet), spread information on our own blogs, and the like?  Maggie, Dammit reminds us all of a simple fact:  Check sources, and verify before reposting or retweeting.  Many of us have pledged to be cautious, to wait, to see how things shake out before we jump.

Those are all good things.

But remember, although we have incredible power to make mistakes online, we also have incredible power to make a difference.  Remember when 350 bloggers reposted a blog post about inflammatory breast cancer, calling themselves Team Whymommy?  Remember the bloggers that surrounded Heather Spohr with love, forming Friends of Maddie?  The support that bloggers have sent to Annissa, along with Hope for Peyton?  The goodness of the people who visit the Mothers With Cancer and offer encouraging words through tough times?  The love that has been extended to so, so many bloggers in times of sadness, grief, illness, loneliness, desperation and fear?  BlogHers Act, and BlogHers Act Canada?

These things made a difference.  These posts, these reposts, these tweets, and these donations of time and/or money made a difference in the lives of these families and so many more beyond them.  The blogosphere is full of good-hearted, well-intentioned writers who genuinely want to help and support each other.

As this story breaks in the mainstream media, I hope that they also hear about all the good that is being done online, and how bloggers pull together to support each other in times of crisis.

When we see a mother in need, we lend a hand.  When we see a child in trouble, we take action.  We trust, and we don’t always take the time (or know how to) verify.  We go with our instincts, and we rely on our fellow mothers/writers to be as honest with us as we have been with them.  And when reality turns out to match what we’ve been told, we mill around a bit, not knowing exactly how to act at this party.

For me, I’ve decided to just keep writing, trusting my fellow bloggers who I have built relationships with, reaching out to newer ones, and verifying where I can.  Working with known organizations.  Joining causes bigger than me.

That’s why I’m thrilled to announce that I’ve joined the American Cancer Society’s Blogger Advisory Council, working towards more birthdays by writing about cancer survivors that inspire us, and encouraging others to do the same. I encourage you to join me in this effort, by writing your own post like Julie Pippert, TechSavvyMama, Darryle P, Catherine Morgan, Morra Aarons-Mele, and many other bloggers did, telling your truth, and tagging your friends, or by sharing the information that I’ve posted about inflammatory breast cancer, information that many have never heard and that could save a life.

Lives are being changed because we are speaking out.  They are.  Julie had to remind me of that this week, but I’m forever grateful for the reminder — which Morra then shared in The Huffington Post.   It couldn’t have come at a better time, in the wake of the alleged balloon boy hoax and these TSA accusations, stories that make me cringe and wait for it to all blow over.  But we can’t wait.  We can’t be silent.  10,000 people will get inflammatory breast cancer each year.  Most will have absolutely no idea what’s happening to them, and neither will their doctors.  But by us speaking out, we’re getting the word out, and people are getting treatment.  300 women will be diagnosed with IBC today, and they will have a chance at beating this terrible disease and spending more of their lives loving their families, supporting their friends, contributing at work. We must keep speaking out, and supporting our friends in need.

Lives are being changed.


Letter to friends I haven’t yet met

October 16, 2009

Dear Little Rock Mamas,

I’ve just finished reading about your Race for the Cure team that is preparing for the big race on Saturday. It sounds like there are a lot of fun events going on, and I’m looking forward to reading more posts about it on your blog. Race for the Cure is a great event to raise money and awareness of breast cancer, and that’s so important, as early detection is the key to catching this “beast cancer” before it develops into a monster that overpowers even the most technically advanced chemotherapy, radiation, and surgical treatments.

You guys know how to detect most kinds of breast cancer, right? With regular self-exams, looking for a lump? Of course you do, and I know you’re reminding your readers too. But as it turns out, there’s another kind of breast cancer lurking out there, that is far more sneaky, and far more deadly. It’s called inflammatory breast cancer, and it forms inside your breast without a lump. That’s right. There is no lump. The cancer forms in thin sheets, or in nests, like a bird’s nest of cancer growing inside your breast. There are few external signals or symptoms, and they’re sneaky too, since most of them are similar to mastitis, which many of us have experienced while breastfeeding a baby, or bug bites, or sunburn. But taken together, one or more of these symptoms can signal a dangerous cancer lurking in your breast.

What are the symptoms? Here’s a list, from the IBC Research Foundation:
* Swelling, usually sudden, sometimes a cup size in a few days
* Itching
* Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
* Ridges and thickened areas of the skin
* Nipple retraction
* Nipple discharge, may or may not be bloody
* Breast is warm to the touch
* Breast pain (from a constant ache to stabbing pains)
* Change in color and texture of the areola

And here’s my own pitch. If you notice ANYTHING DIFFERENT on one breast that’s not on the other breast, please CALL YOUR DOCTOR. Today. Because this cancer moves fast, faster than almost any other cancer, and is deadly. Only 40% of patients survive 5 years after diagnosis.

I’ve already lost too many friends to this disease, bloggers and readers just like you. Won’t you please check yourself for these symptoms, print a copy and file it away for later, and SHARE IT with your friends? Need a visual? Worldwide Breast Cancer has some really cool posters (also on flicker) that illustrate visual signs of breast cancer … using fruit instead of the human body!

I learned about inflammatory breast cancer very accidentally, when researching my mother-in-law’s breast cancer diagnosis. There was a link at the bottom of the page, and, curious, I clicked it. As I read through the symptoms, I had the strangest feeling, scoffing, well, I have that. And I have that. Hmmm, I have that too. And, when I called my doctor, and went in the next day, it turned out that I needed to see a specialist to rule out IBC. She wasn’t able to rule it out, however, since the biopsies showed that I indeed did have IBC — the deadliest form of breast cancer.

Two years later, I’ve survived cancer, 6 months of chemotherapy, 7 weeks of daily radiation, 2 surgeries to remove my breasts and ovaries, and a lot of physical therapy to deal with lymphedema, which makes my arm swell in the heat as a side effect of the mastectomy that took all my lymph nodes. It’s been a hard, hard road. But I haven’t done it alone. I blogged my way through this disease, and was very much supported by my friends online and off, as well as my family, which really rallied to come and care for me and my children. I’ve survived cancer.

The last two years have been in some ways terrible and in some ways absolutely wonderful. The terrible part is detailed on my blog, a daily history of what it’s like to go through a cancer diagnosis and treatment … and come out the other side. The wonderful part is there too, magical days with my children, weekly playdates with their friends and my mom-friends, getting back to normal with things like book club and volunteering and the kids’ school, and dancing with my husband in the chemo ward, in the rain, and in the kitchen. I’ve celebrated birthdays — of me, my children, and my children’s friends, and I intend to celebrate many more birthdays to come.

There is joy after cancer. But the important part is getting there — the after cancer part. So good luck this weekend, walk hard, and SHARE the SIGNS of inflammatory breast cancer with the people you meet. You never know. You might just save a life.