Homebound

November 22, 2011

Well, it’s time to face it.  My pain level is so high, my energy level so low (aided and abetted by the pain medication, chemotherapy, and other drugs), and sitting is so uncomfortable (a batch of cancer cells sits on my spine in what must be a lump, pushing on me when I sit normally) that I’m just not getting out much anymore.

Add a sick little boy to the mix (just the crud that’s been going around the schools), and none of us have left the house for days.

But are we really missing much?

Our groceries come to us via Peapod.  News of the day is delivered via TV, internet, or dead tree on the front doorstep.  Mail moved to email and automatic payments long ago.  Movies are easily streamed, and even my prescriptions can be mailed to me (although that requires a bit of advanced planning and recurring prescriptions; since mine have been changing a lot lately (more pain meds), we fill scrips on the way back from treatment).  My hairdresser cuts my hair out of her home, near the school, and her cuts are even better than the fancy ones downtown.  I can order anything I need through the internet, including clothes from Lands’ End and Christmas presents from Amazon.  With Amazon Prime, I can even get a razor delivered in 2 days, as I learned from Stimeyland and her mother one day this summer.

I can browse stores and ideas via Pinterest, buy via store web sites, try on in my own living room, and send back what doesn’t fit or flatter.  The boys and I got our fall outfits this way, and it’s actually been rather fun — particularly without the whining of physically visiting store after store.  There are few things that we can’t do via internet, aside from my cancer treatment — it turns out that even my pediatrician makes housecalls if a child gets very sick on the weekend (what a surprise!  But it’s easier than opening up the office, he said, if you both live nearby.  It was so nice for us all to be able to be there for his sick appointment, instead of worrying at home while I waited for my husband and son to return).

And as far as social media, a culture that I adopted out of necessity after my cancer diagnosis and treatment in 2007?  Well, both new and old friendships are alive and well using Facebook, Twitter, and our blogs, along with phone calls to keep up with the everyday.  I used Second Life to attend conferences I couldn’t attend then, reveling in the freedom I suddenly had to talk to other people I knew from around the world while our avatars stood in the same room together, listening to panels and enjoying virtual wine and cheese.  It didn’t have to be that complicated, of course; now we know that Ustream works just fine for panel discussions, and WebEx for smaller meetings.

I even have a groovy new tablet computer called the Kindle Fire that allows me to do some social media tasks (email, Facebook, blog reading and commenting) from from bed without the excess heat and weight of a laptop when that angry spot on my spine acts up and it’s impossible to sit too long at my desktop in the room next door.   It’s larger interface is perfect for blog reading and commenting is a breeze with the virtual keyboard and memory functions – a huge improvement over smartphones.

The Fire also entertains me, bringing web sites, ebooks, real books, tv, movies, music, Suduku, and crossword puzzles right to my bedside without the startup time of a laptop or the heaviness of its footprint.  It’s a new generation of accessibility – as I was happy for my laptop in 2007, I am grateful for my Fire in 2011.  As it turns out, there are workarounds after workarounds and we’re doing pretty well, all things considered.

I do, however, miss a few things quite a lot.

  • I miss going out with my friends.  Seeing many of them over at The DC Moms and on their own blogs or Facebook is awesome, but it’s just not the same.
  • I miss greeting the other moms at school dropoff and pickup, exchanging smiles and good wishes for the day.
  • I miss going to church with my family, little heads resting on shoulders and valiant little boy attempts next to me to sing the morning’s hymn.
  • I miss going to work, cheerfully saying hi to colleagues in the morning and brainstorming together over lunch, even though I still can do my work here, at my desk, or from bed if necessary if the pain is too high or poorly controlled.
  • I miss taking walks through the park with my little ones, although I suspect I did that more when they were very little than I might today, with 7 and 5 year olds.  Still, I had planned to go walking in the woods with them, enjoying the smells of Fall and the forest, so very many times … and, this year, we haven’t.

I do miss these times away from the house, although I see now that what I miss are the times with people, not the times running around doing errands or shopping for this or that or finding just the perfect whatever-it-is that’s on my list today.  As I have good days, and I know I will have good days again, I want to remember to prioritize times with people.

In the meantime, I’m going to start commenting on blogs again.  Calling my friends just to talk.  And letting you know how very much you mean to me, keeping me sane and happy, even though I’m almost completely homebound.

Nothing is permanent.  Although this is how I feel today, as my meds are only poorly controlling the pain, I was able to get out two weeks ago, and it was marvelous.  I had a wonderful time at the Women and Mars Conference.  It took me days to recover from attending just two panels that day (and then chemo the next day), but it was absolutely wonderful to leave the house and share what I’ve been studying lately.  By the way, the panel discussion was livestreamed and recorded – you can view Astronaut Catherine Coleman’s remarks and the  Women and Mars Panel 1 from this link – the panel begins at about 1:19 on the clip, and I give my prepared remarks at about 1:48 into the clip.  As a bonus, Dr. Jim Green, the Planetary Science Division Director at NASA, awarded me the Planetary Science Division Public Service Award a few minutes before the end, at 2:52; at this point, I was simply jello.

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Wishes

April 26, 2011

Dandelion, taken by Louise DockerAs we set off on our early morning walk, Little Bear scooting along on his tricycle and 6 year old Widget on his bike, the sky was blue and clear, the weekend’s rainclouds just a memory.

Four year old Little Bear stopped and plucked a dandelion in full feather, saying, “I wish for a dog!” “Me too,” cried his brother. Me three, I said, and we blew the fluff right off that dandelion so enthusiastically that a seed or two landed in Little Bear’s open mouth. Sputtering, he recovered his dignity and we continued up the hill.

At the top, Widget picked a second dandelion, asking me first what I wished for, if I could have anything in the world. As we had had a little talk about cancer that morning, preparing him for an upcoming class for kids of parents with cancer, I was honest with him, kneeling down and telling him my wish for many more years together.  “Me too!” said Widget, and he asked “What do you wish for, Bear?” “A dog!” said Bear, oblivious to the topic at hand, focused entirely on the Chow we’d passed earlier.

We blew that dandelion out fiercely, taking care to avoid Bear’s face this time, but one must have floated back our direction, because as I heard Widget explain what had just happened to Bear, I had to wipe something from my eye.  Such little bits of children they are, to deal with such big topics, but so strong.

My sadness disappeared quickly as I heard Widget explain, “We wished for many more years together, Bear. Maybe even a whole lifetime!”

The sun was shining as he pedaled away, and the birds sang happily above.


Like Mama won over cancer

April 6, 2011

Little Bear, worried about a field trip yesterday, “But Mama, I need you there in case there is something scary.”

You’ll be okay, Little Bear.  Mama can’t go today, but your teacher will be there, and she will keep you safe. 

Cuddled in my arms, he asked, “But what if there is something scary?”

Well, there will be, Little Bear, it’s the story of Passover, and Pharoah gets angry.  He’s the bad guy, remember?  But Moses wins.  It’ll be okay, because Moses wins.

From deep in my arms, came a small, confident voice:

“Like Mama won over cancer.”

That’s right, Little Bear.  And we cuddled and were strong together.

I haven’t talked about my cancer with them in months.  But of course they know, since I’m still gaining strength and taking naps in the late afternoon, when the morning just isn’t enough, or when I’ve pushed myself to get work done.  I’m stronger and stronger, but still not close to 100%.

And we have scans on Friday.  I’m nervous, I’ll admit.  But I want Little Bear’s words to be true, one more time. 

I want to win over cancer.  Again.  And yes, I know that’s a selfish hope, to beat cancer a FOURTH time, but it’s selfish in protecting my children.  They’re not ready for me to leave yet, and I am not ready to leave them to grow up in the world without their Mama.


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!


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