Bloganthropy and Lymphedema

February 28, 2011

A little bit of good goes a long way.

A couple years ago, two women named Rachel and Robin created a new product – a compression sleeve that they and their friends would be willing to wear to control their lymphedema, swelling in the arms caused by the removal of lymph nodes during a mastectomy.  They started a company called LympheDIVAs; Rachel’s brother Josh and their parents continued to improve the product and market it to other breast cancer survivors after her death. 

Carole lost her cousin Crickett to metastatic breast cancer too, but instead of wailing at the universe, Carole and her aunt Bonnie set up a foundation to help other breast cancer survivors feel good about themselves again.  Carole sent an email offering help to survivors, and one copy landed in Sue‘s in-box. 

Sue forwarded the email to me, offering me the opportunity to be pampered a little, because she knew I was suffering from chemotherapy again, and it touched my heart.  My heart was kinda busy, though, because my physical therapist Jonelle had mentioned casually while working on the lymphedema in my arm that it was so great that I was wearing a lymphedema sleeve to control it — many of her patients couldn’t afford one.  When I arrived home and checked my in-box, there was the opportunity to make a connection and to fix this wrong that lay on my heart — to help others have what I have, the opportunity to control this medical condition at home, without weekly trips to the physical therapist.

Three phone calls later, Josh and Carole agreed to provide donated lymphedema sleeves to patients in need, and the lymphedema sleeve project was on.  The problem then was how to make people aware of the opportunity, so Sue and I sent a couple emails and a few tweets and then The DC Moms and twitter friends and blog friends and friends of friends stepped up to help, to spread the word, one tweet, one post, one update, one person at a time.

I wrote a post, Sue wrote a post, Minky wrote a post, and the news gained traction.  Over 100 people tweeted the links that week.  150 people shared a link on Facebook.  Over 40 bloggers added their posts to ours, in attempt to saturate the internet with the news, so that a woman in need, searching for help to afford lymphedema sleeves or other post-mastectomy gear, could find it. 

Kristen, Jessica, Amie, Joanne, Marty, Victoria, and Elizabeth then put their money where their voice is and donated $1/comment on their lymphedema post.  Others went to donate so that additional sleeves could be bought as needed, and before we knew it, $1518 had been sent to Crickett’s Answer for Cancer by over 20 people, and 36 new breast cancer survivors were helped in the first 40 days.  

On Friday, the project was recognized by Bloganthropy, with me named as January’s Blogger of the Month.  Thank you, Bloganthropy, but the award really belongs to all of the bloggers who helped saturate this part of the ‘net with notices that there is now help available for breast cancer survivors who need but can’t afford compression sleeves to control their lymphedema. 

Thank you, friends.  Every day, your actions remind me that there is indeed good in the world.  Here are the posts that were written in support of this effort, and tweeted ’round the world:

Aimee: http://smilingmama.blogspot.com/2011/01/surviving-in-style-free-lymphedema.html
Amie: http://www.mammaloves.com/2011/01/wanna-join-an-army/
Amy:  http://teachmama.com/2011/01/new-for-us-friday-help-for-cancer-patients.html
Ann Bibby: http://www.care2.com/causes/health-policy/blog/-blogger-reaches-out-to-breast-cancer-patients/
Becky:  http://www.morebirthdays.com/blog/featured/the-power-of-one-helping-fellow-survivors/
BlogHer (Mel): http://www.blogher.com/start-out-your-new-year-helping-great-project?wrap=blogher-topics/conditions-ailments&crumb=32399
C. Mom:  http://www.lacaramamma.com/2011/01/06/can%E2%80%99t-afford-lymphedema-sleeves/
Crunchy Chewy Mama: http://crunchychewymama.com/index.php/when-a-friend-gets-cancer/
Dr. Kathleen Ruddy: http://breastcancerbydrruddy.com/2011/01/25/recycling-information-help-for-lymphedema/
Elaine:  http://connorandhelen.blogspot.com/2011_02_01_archive.html
Elizabeth: http://halfchangedworld.com/2011/01/for-whymommy/ Florinda: http://www.3rsblog.com/2011/01/for-whymommy-help-for-cancer-survivors.html
Garza Girl: http://www.garzagirls.com/2011/01/24/f-off-cancer/ and http://www.garzagirls.com/tag/whymommy/
Ilinap: http://www.dirtandnoise.com/2011/01/breast-friends-and-a-39-mile-walk-in-the-park.html
J.J. http://caffeineandaprayer.com/2011/01/09/lymphedema-sleeves-real-help-for-breast-cancer-survivors/
Jane:  http://jane.whiteoaks.com/2011/01/08/lymphedema-sleeves-demystified/
Jessica:  http://aparentinsilverspring.com/2011/01/a-parent-in-silver-spring-on-cnn-how-the-story-changed-how-im-changing-it-again-for-cricketts-answer.html
Joanne:  http://www.punditmom.com/2011/01/princesses-fighting-cancer
Jodifur:  http://jodifur.com/2011/01/cant-afford-lymphedema-sleeves.html
Justice Stacey:  http://mamalaw.com/2011/01/cant-afford-lymphedema-sleeves/
Khara: http://babymammachronicles.blogspot.com/2011/01/help-for-breast-cancer-patients.html
Kim: http://www.sheposts.com/node/859
Kristen: http://www.motherhooduncensored.net/motherhood_uncensored/2011/01/whymommy.html
Lara: http://chickennuggetsofwisdom.com/2011/01/24/no-princess-fights-alone/
Leticia:  http://www.techsavvymama.com/2011/01/no-princess-fights-alone-join-army.html
Liz: http://www.thisfullhouse.com/reviews/2011/01/good-causes-cricketts-answer-to-cancer.html
Lynn:  http://organicmania.com/2011/01/07/helping-those-who-need-it-most/
Marty: http://canapesun.blogspot.com/2011/01/lymphedema-sleeves-for-every-survivor.html and http://canapesun.blogspot.com/2011/01/lets-all-be-copycats-raising-money-for.html
Mayberry Mom: http://mayberrymom.com/2011/02/04/on-not-fighting-alone/
Mel: http://www.stirrup-queens.com/2011/01/322nd-friday-blog-roundup/
Michele: http://scrapsofmygeeklife.com/everything-else /cant-afford-lymphedema-sleeves/
Michelle:  http://www.wifeandmommy.com/cant-afford-lymphedema-sleeves/
Minky:  http://dialmforminky.com/2011/01/need-help-affording-lymphedema-sleeves/
Mod*Mom: http://www.momblognetwork.com/%5Btermpath-raw%5D/lymph-edema-sleeve-giveaway-12000
Robin: http://noteverstill.blogspot.com/2011/01/rare-psa-lymphedema.html
Robin: http://wwwmylifeasitis.blogspot.com/2011/01/cant-afford-lymphedema-sleeves.html
Sam: http://www.momblognetwork.com/%5Btermpath-raw%5D/help-our-friends-support-crickett-s-answer
Stella: http://imstell.wordpress.com/2011/01/06/advocacy-and-lymphedema-sleeves/
Thien-Kim: http://www.imnotthenanny.com/2011/01/cant-afford-lymphedema-sleeves-new-help.html
ThisFullHouse @ Wellsphere: http://www.wellsphere.com/parenting-article/for-whymommy-give-cancer-the-virtual-bitchslap-it-deserves/1325109
UrbanMama:  http://spa.typepad.com/mamas/2011/01/index.html
Vera: http://breast4healing.amplify.com/2011/01/25/361/
Victoria: http://www.themummychronicles.com/2011/01/copy-cat-for-cancer.html
Wendy: http://wendyharpham.typepad.com/healthy_survivorship/2011/02/help-for-patients-with-lymphedema.html

This effort was recognized by writers at the American Cancer SocietyBloganthropy, BlogHer, Care2, Mom Blog Magazine, and ShePosts as being an exciting community effort.  Thank you all.  And if I missed your post or it hasn’t gone up yet?  Let me know.  I’d be thrilled to add even more!


Can’t Afford Lymphedema Sleeves?

January 5, 2011

Are you or do you know a breast cancer survivor?  Please read today’s post and pass it on.  If you can’t afford to purchase a lymphedema sleeve, gauntlet, and/or glove, and you can’t manage your post-mastectomy swelling, Crickett’s Answer and LympheDIVAs want to help.

Today, I am pleased to announce a NEW opportunity for breast cancer survivors who have had a mastectomy and/or axillary dissection of the lymph nodes due to breast cancer and have swelling of one or both arms but cannot afford the $200-$500+ cost for two sets of the compression sleeves and gauntlets that survivors with lymphedema must wear every day to keep the swelling in check. 

Although lymphedema sleeves are medically necessary, they are not covered by Medicare OR most insurance plans under current law, and thousands of survivors go without the sleeves, needlessly suffering congestion, swelling, and pain that interferes with their normal activities.

Crickett’s Answer, a 501(c)3 nonprofit organization founded in memory of Crickett Julius, has just joined forces with LympheDIVAs to help other breast cancer survivors who fight not just the beast that is breast cancer but also the fallout of side effects that includes lymphedema, which may limit survivors’ activities.  By working together, they are now able to provide needed lymphedema sleeves and gauntlets to women who need them but cannot afford them out-of-pocket or convince their insurance companies to pay for them.  They do this in honor and memory of their loved ones.

Crickett JuliusCrickett Julius survived breast cancer only four months, but her mother and cousin are dedicated to helping other women enjoy their life post-diagnosis through Crickett’s Answer, a 501(c)3 organization that provides wigs, mastectomy products, oncology/mastectomy/ lymphedema massage, facials, and other pampering services as a way to help women feel feminine and beautiful after losing their hair and/or breasts.

Rachel TroxellLympheDIVAs was founded by Rachel Troxell and Robin Miller, friends and breast cancer survivors who wanted to create a more elegant and comfortable compression sleeve.  Rachel continued to build the company during her later recurrence.  Even though she died two years ago, at the age of 37, her father, mother, and brother continue to grow the company in her honor and in the hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong, and confident as Rachel was.

To ask for help, please download and complete the forms at Crickett’s Answer, writing in “lymphedema sleeve and gauntlet” on page 2 of the application. 

To help someone else, please copy and paste this post on your blog or email it to a friend (or your local cancer center!).

To donate, go here

To help change the law so that this medical garment is covered by cancer survivors’ insurance, stay tuned for more about the Lymphedema Treatment Act when it is reintroduced in the 2011 Congress.

Because of these women, these three thirty-something women who didn’t ask to get breast cancer, and the men and women who love them, there is now help for women who can’t afford lymphedema sleeves, a medically necessary garment not typically covered by insurance.  Their legacy lives on.

Note: Cancer patients who are members of the National Lymphedema Network and who are treated by an NLN therapist can also apply to the NLN garment fund, set up in honor of Marilyn Westerbrook


Thank you, Lymphedivas!

January 3, 2011

The first of the year is a time for making new starts, and writing thank you notes from the holidays.  Today’s post is a thank you note to Lymphedivas, the company that makes lymphedema sleeves fashionable and fun.  Without their product, it would have been much harder for me to go out in public the last few years.

Dear Lymphedivas,

My name is Susan Niebur, and I’m a 37-year-old inflammatory breast cancer survivor with two young children.  After my double mastectomy in January 2007, my right arm began to swell and develop lymphedema.  I wore the recommended sleeve and glove everywhere, but I was often greeted with looks of dismay as friends and former associates asked me, “What on Earth happened to your arm?”  When I dutifully answered that I had had inflammatory breast cancer, had a mastectomy, and now wear these sleeves, yes, for the rest of my life, the questioners would react strongly, and conversation would be difficult.  I didn’t like going out to meet new people anymore, and I stuck close to friends when we did.

Then I found Lymphedivas.  Skeptical that something so thin and pretty could work as well as the heavy-duty knit glove I wore, I bought a single style – the black paisley sleeve and gauntlet.  From the very first night I wore it out with the girls, I’ve been greeted not with “Oh, no, what happened to you?” but with “Oooh, that’s so pretty!  I love it!” and smiles.  I’m now the happy owner of four different styles, and I love matching them to my outfit or accentuating a simple black or white tee with my beautiful sleeves. 

When I had a recurrence earlier this year, the first thing I did after agreeing to treatment was to call Lymphedivas and order matching sleeves for my left arm.   This time, I would go through treatment in style! 

L-R Amy Mascott of Teachmama.com, Leticia Barr of TechSavvyMama.com, Susan Niebur of ToddlerPlanet.wordpress.com, and Jessica McFadden of AParentinSilverSpring.com, at BlogHer 2010

The picture above is of my blogging friends and me speaking at a panel at Blogher 2010.  I gave this talk – and a keynote, where I spoke out about breast cancer just like I do on my blog, Toddler Planet, – wearing the YSC sleeve and glove on my right and the bei chic sleeve and glove on my left.  And, just as always, I got gentle hugs and many, many compliments.  Thank you, Lymphedivas, for turning a needed medical sleeve into a fashion statement that helps me move beyond cancer and go out again, with confidence.

Sincerely,

Susan Niebur


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.


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.


Lymphedema sleeves, now in technicolor!

August 26, 2009

Those of you who see me “in person” know that I have to wear a lymphedema compression sleeve and glove every day.  The compression keeps my arm from swelling too much between treatments, particularly in the summer.  (At least in theory.  In practice, this summer has been pretty hard on the old arm, making outside play frustrating, to say the least.)  I’m not too concerned about fashion, as there is really no alternative to this.  I have to wear it, period.  Every day.  For the rest of my life.

So I was kind of excited to see this:  the Juzo dreamsleeve, now in color.  Yes, the color selection isn’t too wide, but I’m told they are seasonal and there should be more coming in September.  Cool.

Now all we need is for Juzo to make a matching glove.


Binding

March 19, 2009

The wrap on my arm confines me, making it difficult to write, difficult to post, difficult, somehow, to think.

It’s funny, the things we take for granted. I thought that once my treatment was over, it would be over. But it’s still a growing process. A learning process. A grieving process.

Soon, it will be time to put it all away and move on. Soon. But today is not the day. I came too close, I squeeked by with too little margin, I cheated cancer, and escaped with my life.

Tomorrow, I will give thanks and move on. I want to. Oh, how I want to.

I want to move on, and to play in the sunshine of spring, and to shop with the most normal of questions (Does this make my butt look big?) instead of the weird ones I have now (Do these black pants bulge over my swollen tummy? Do they cover my oopherectomy scars? How will I put this great shirt on over my bandaged arm? Is this crisp white blouse too sheer? (For even the laciest camisole will not disguise a boy-flat chest) And my favorite, is this cut too low under the arms?) I’m not asking to be vain, you know. I’m asking — you, the mirror, myself — because I am having trouble myself determining what is real and what is just an annoyance.

And what is real, in terms of limitations? Am I disabled? I think not, but I have trouble opening doors, lifting my toddler, and such. (We “bump” down the stairs together these days because I cannot carry him.) Am I scarred? Well, sure, but that’s the price I paid for successful surgeries. Should I cover up my wounds? Can I? Should I pretend it didn’t even happen? That I’m just, again, a woman trying to make it through the day?

I don’t know. I want to be in a place where it doesn’t matter. Where I don’t have to think about the cancer or the past, and I can just enjoy the present.

But the wrap on my arm confines me, constantly reminding me about the cancer, limiting my perspective and my world, and in some small way I am reminded of foot-binding, that barbaric practice that limited the outlooks of millions of Chinese girls, so many years ago. It’s not that I *can’t* function well with this apparatus on, or that they *couldn’t* teach each other higher math with bound feet. It’s just, well … more difficult.

And then of course I get all distracted and go on about the suffering of those poor little girls, all those years ago, and how they suffered just to make their feet — important parts of their body, that they needed to be able to use — more attractive to men of their culture. Men who almost never actually saw those feet, even. But just the idea of the bound foot was sexy. Ugh. And double ugh.

I need to get out more.

It’s just … the wrap on my arm confines me.


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