No Princess Fights Alone

January 26, 2011

The next morning, I turned on the computer and could hear you all cheering me on from the comments.

As I scrolled down, I could hear you, and you weren’t sad any more. You were cheering me on, and my little Lego warrior princess, and loving my sons’ insight and innocence.

No Princess Fights AloneAnd then, I clicked through, and I saw the little warrior princess looking out at me confidently from Amie’s blog. Leticia’s. Amy’s, and Jean’s, and C.Mom’s and Abby’s. Marty’s and Laurie’s and Robin’s and Stephanie’s. Kate’s. Amy’s. Mel’s, and the LFCA community. Jenny, fellow IBC survivor in New Zealand. Sue, Margaret, Sunday. Ella, Kathryn, Anne, Jennifer, Heather, Stacey, Jennifer, Annie. Bon. Heather, Joa, Aimee. Cyndi, Rebekah, and Gayle. Michelle, Nicole, Stephanie, and Ilnap and the list is growing still —

I am blessed. beyond blessed, in every dimension of my life. I have a loving family, a strong and supportive husband, the work of my dreams, and the most amazing friends, who won’t let me wallow alone. They aren’t writing me off. and so neither will I.

As I stared, unbelieving, at the screen on Saturday, my little boys came in and climbed onto my lap for a snuggle. Widget looked up and was surprised to see his little warrior princess looking back. He asked, “Why is the Lego girl on the computer, Mommy?” and I told him what you all were doing. Both boys got happier and happier as we clicked through to post after post, blog after blog, and the warrior princess stood strong on page after page.

As they laughed in delight, I couldn’t help but join in, and we giggled and laughed and we turned off the computer to go read stories together, as it was nearly time for bed.

We all slept well that night, knowing that we do not fight alone, but with an army of princesses – Lego and real-life – and their actions go beyond the badge.

For each badge posted, Amie/MammaLoves will donate $1 to Crickett’s Answer to help women in need afford lymphedema sleeves and gloves to keep their arms and hands from swelling after a mastectomy (or two). Leticia/Techsavvymama will donate $1/comment on her post. Joanne/Pumditmom will donate $1/comment on her post. Go, comment, and spread the word – there is help available for breast cancer survivors needing lymphedema sleeves… and let me know if you’ve done something to help pass along that information (just use the words “lymphedema sleeves” and include a link to Crickett’s Answer). There are boxes of class 1 sleeves already at Crickett’s Answer that need to find their way to survivors in need. Class 2 sleeves will be bought as needed.

And if you just want to feel good about humanity? Go over to Amie’s post and see the growing army of princesses.

Together we fight, as the drugs I take each morning fight and starve and cut off the cancer cells so that they can’t grow any 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


Moments of Joy

December 14, 2010

On the wall in our family room there is a saying: “Life is not measured by the number of breaths we take, but by the moments that take our breath away.”  Now, I’m not one to fall for sappy sentiments (really!), but this one is special to me, and it’s kind of become my motto.  A challenge, if you will, to stuff the goodness of living into every day, to make it a habit, which is actually a pretty cool way to walk through life.

Every day we have the opportunity to make a memory, with our children, with our spouse, and with our friends.  Every day, there is beauty, if only we stop to look for it.

TV with the boys

There is beauty in children – and friends’ children – doing the most mundane activities together, like setting up battles with playmobil castles or watching a little Super Why while their mamas rest.  (Look at that little hand!  Instant friends, I tell you!)

There is beauty in teaching children about caring for pets, even if their pets are only guppies that swim to and fro in their tank, among the plants and their own little castle or Eiffel Tower.  When my three-year-old woke me up yesterday with the news that his blue guppy was sick, the concern in his voice melted my heart, and we went to check him out (okay, after just ten more minutes.  It was still dark outside, people!).  As it turned out, the fish wasn’t sick, but injured, and that prompted a trip to the fish store after preschool, our first venture outside in a week, and the purchase of four more girl guppies so the boys wouldn’t fight over the girls so much.  (That will totally be an object lesson when they’re older.)

Meeting @Stimey's mouseThere is beauty in introducing little ones to new ideas, new activities, and new creatures – in seizing opportunities as they arise.  I was blessed to be able to do this last week, when @Canape visited me and we went over to @Stimey’s for a little while, to see friends and to play Wii.  Baby Colin and I were admiring the mice, and Stimey asked if we wanted to hold one.  Did we ever!  And from that moment, a memory was born, of brave Baby Colin reaching out to pet his first little bitty creature (check out the concentration on his face, and the determination in that little bitty pointer finger!), of a friend encouraging us in exploration, and of me holding Canape’s baby boy, introducing him to something new in his world.  Oh, the memory that we made that day is precious indeed.

And one more memory that I treasure today – the friends who have come by to visit me during my illness, grabbing an easy chair and sharing their latest, talking and quietly keeping me company, which is quickly becoming a highlight of my week.  How often do we get to sit and talk – really talk – with a friend for a half hour?  Not nearly often enough.  The friends who have come to visit me while I’m down are friends indeed, and as I move forward through this battle and the rest of my life (link goes to a survivor story I liked today), I will keep those memories in my heart, and remember how friends gave of their time, their precious, oversubscribed mommy time, to help a friend who was ill and tired of being alone in the house.