February 6, 2012

Susan Niebur passed away on February 6, 2012 after a lifetime of love, crusades, and strength.  Over the last five years she lived with inflammatory breast cancer, a rare and aggressive form of breast cancer that presents without a lump.  She chronicled her life with cancer here on her blog Toddler Planet with honesty and emotion that were even more rare and aggressive.

She is survived by her family, friends, achievements, and the indelible marks she made on people around the world.  In lieu of flowers, please consider furthering Susan’s legacy through a contribution to the Inflammatory Breast Cancer Research Foundation.  Or please choose to make a difference somewhere, anywhere, to anyone.

I can’t begin to describe how her friends, those physically nearby and those she knew only on the internet, enabled her to carry on through five years of treatment and recurrence.  Many of you have commented on Susan’s strength and grace, but these were traits that she pulled from all of you.

Thank you all,

Curt Niebur  (WhyDaddy)

A little trouble

January 17, 2012

I’ve been having shortness of breath for several weeks, which we chalked up to the pneumonia, but it’s just gotten worse. Yesterday I had trouble just walking from one room to the next. Today, just sitting on the couch with a friend. In fact, I’m still having trouble, even though I’ve been hooked up to the oxygen all day.

We’re going to the ER now, to get scans, at the direction of my oncologist. Please pray for us tonight.

Love to you all and all whom you love,

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:

Ann Bibby:
BlogHer (Mel):
C. Mom:
Crunchy Chewy Mama:
Dr. Kathleen Ruddy:
Elizabeth: Florinda:
Garza Girl: and
Justice Stacey:
Marty: and
Mayberry Mom:
Michele: /cant-afford-lymphedema-sleeves/
ThisFullHouse @ Wellsphere:

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!

The Novena

January 31, 2011

My friends/church are saying a novena for my healing, starting tonight.  Being a new Catholic, I’m only starting to learn about formal prayers like this, but I welcome it.  Colleen will lead us through what to say and what it means over here (or you can download the printable version).  All are welcome. 

It is true, I have prayed for healing before, and so many prayers have been said on my behalf.  I know it gives me strength and hope.  I have faith that if it is God’s will, I will be healed.

When we arrived home from the grocery store this afternoon (stocking up on milk and bread before this evening’s storm), there was a hang-tag on the door that said that flowers had been left at the neighbor’s for me.  Surprised, I checked on a family down the street, as they shoveled their driveway with children in tow, and then walked across to her house.  She met me on the snow-covered lawn, holding these daisies in her hands and saying, “They’re beautiful.”

Well, of course they were, and of course we lingered to chat.  We’re two who could easily be good friends, if not for all the things that separate us, not least the six children, mine all boys and hers all girls, that span the ages from newborn to nine.  And yet we hardly ever see each other, and our houses keep each other company while we remain almost-strangers.

Today we lingered, and when she asked, “How are you?” it just all spilled out, how we had gone to get a scan to see the good news that the cancer was gone, but it was back instead, and how I was in a clinical trial and hopeful and positive but still I’d really rather not be here again.  I stopped and looked at her, embarrassed that I had let all that out, for I don’t really talk about it out loud, and she looked at me and said, “My mother has cancer.”  Her mother was just diagnosed with stage 1, a thousand miles away, and she’s suffering through radiation, harder at her age, I’m sure, and pretty discouraged about it to boot.  We stayed and talked, and I don’t think I said anything too special as I answered her questions about radiation, about fatigue, about how to help her mother as she goes through treatment, but at the end, I hugged her, and she clasped my arm and said, “I think the flowers were meant to be.”

As I walked back home, I marveled at how the flowers had indeed already brought me a moment of cheer and friendship, and I hadn’t yet looked at the card.  But when I looked at the card, I was blown away:

Dear Susan, We see the miracle in the beautiful daisies, so how can we not believe that there is a miracle left for you.  We will keep praying as you keep fighting. Love —

And there it is.  Do I believe in miracles?  You bet.  Always have.  Is that incompatible with being a woman of science?  I don’t think so.  And neither did many great men and women through the ages.  I don’t know how it all works together, I’ll admit, but I know enough to know that just because I don’t understand doesn’t mean that it isn’t true. 

At school pickup today, a new friend pressed something into my hands, a relic, she said, and told me to take it, along with her prayers, she said.  “I am praying for you,” she said, and she knows that God hears our prayers.

After three days break from the treatment, ordered by my doctor because I lost sensation in my fingertips and thumbs on Thursday, I’ve started taking the medicines again.  That’s progress.  That’s something.  And the arms I’ve clasped today, the friends I’ve shared a smile and a No Princess Alone buttonhope with, the faith that has been spoken to me today by Catholic and Orthodox Jew, and the very fact that I’m here having a quiet moment with you — well, today has been a very good day.

And as for the princess?  Well, she keeps popping up on blogs, and she and I spent the early part of the afternoon with Little Bear, building a replica of our house.

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.

The mini bike

December 30, 2010

Merry Merry and Happy Happy, everyone!

I’ve had a wonderful Christmas with family, following the doctor’s orders to rest and relax — with the possible exception of a drive halfway across the country to give my children a memorable, snowy Christmas with their Florida cousins and Midwestern grandparents. We all had a lovely time, and I have GOOD NEWS to share with you on the advocacy front, when the dust settles and the laundry is clean and we’ve all caught up on our sleep. For now, I’m offline, trying to get caught up, but I want to share with you a very special story that makes me cry — and smile, with hope.

This story was written by my friend, Lisa Moreau.

On the first day of Fall I received the horrible news that my eldest cousin was killed on his way home from late night farm work in rural Kansas.  I was in shock and was having a difficult time trying to accept the reality of the situation.  Why him, why now, what about his wife and two teenage kids???  Andy was more like an older brother to me than a cousin and I just wasn’t sure I was going to be able to get through his funeral.  I just wasn’t ready to let him go. 

When we got to his home I managed to keep myself together.  It was so good to see my extended family and reminisce about Andy’s fun times with all of us.  He always seemed to live life to the fullest.  His wife was struggling, but was on top of everything as usual.  I think we were all taking everything one moment at a time. 

On the day of the funeral, the family had been at the church for the flower service.  We were having a little refreshment in the fellowship hall when they said the service would begin in the main sanctuary, so we walked back together toward the main entrance of the building.  As we were entering, we couldn’t help but trip over a little mini bike (very small motorcycle) in the middle of the sidewalk with a hooded sweatshirt lying right next to it.  At the time I thought it was funny that someone had left it right at the entrance to the sanctuary, literally right in the middle of the sidewalk.  My first thought was that one of his fraternity brothers may be paying his final respects with a bit of flair– inside I knew Andy would have loved it!  I kind of put it aside in my head to figure out later and went in to try to say goodbye.

The day was hard. As I was checking in with Andy’s wife as we prepared to leave the church, I asked if she knew anything about the mini bike.  She smiled and said that the mini bike belonged to one of the boys that played football with Andy’s son.  He has a single mother and used the mini-bike to get places independently, since she worked two jobs and couldn’t get him to practices and such.  Andy and his son had befriended him and given him the nickname Frenchie.  Frenchie had told his mother that he wanted to make sure and go to all of the events surrounding the death of my cousin, to be there for his friend. 

Frenchie came to the house and sat with Andy’s son and the rest of the family the morning and day after the accident.  He came to the viewing, once again on his mini bike, although he had tucked it a little further from the entrance that night so we didn’t all see it.  The next morning he set his alarm to make sure he got to the church in time.  His mother later said she heard him get up and make himself breakfast and get going.  He arrived in his football jersey, to honor Andy, and had worn the hooded sweatshirt on top to keep the jersey clean of bugs.  Out of respect, he took off the sweatshirt when he entered the church and just threw it down next to the bike.  Andy’s wife said he even beat the motorcade to the cemetery.  She couldn’t believe he had the wherewithal to do all of this by himself, noting that Frenchie is only 12 years old. 

Now, Frenchie is a tall 12 years old, and his knees almost touch his ears when he rides his mini bike.  That weekend, Andy’s wife and brothers-in-law decided to do something that Andy would have loved and give them something to be happy about in the middle of all the sadness.  Andy’s brothers-in-law drove to the nearest store and purchased Frenchie a new scooter, big enough for a tall 12 year old to ride around town and presented it to him, with a personalized Frenchie name plate on the back, as the 12 year old and his mother returned from church on Sunday morning.  They told him that Andy would have wanted him to have it and thanked Frenchie for taking the time he took to give Andy’s family support. 

I know that Andy made a difference in my life, but it was so nice to hear and see that this young man felt touched by him as well.  This was a light for me and my family in the midst of a lot of darkness.  I know that good will still continue to come to the world even as I have to say goodbye to those I love.  Luckily, their love keeps on giving, even after they are gone.

Lisa is a faithful reader here and will see the comments.  Thanks for reading – and Happy New Year!

On burdens

October 26, 2010

I’ve started going to church again.  I know, friends from home may be appalled to hear I ever left, but the truth is I had a really bad experience when I got sick last time.  I grieved, and I cried, and I wondered how a good and loving God could let me get so sick and maybe even take a mother away from her babies, the little one just a few months old.  I railed, and I studied, and I questioned.  And I called my minister, the minister of the church I’d attended for years and years, and he had no answers.  He talked to me for 20 minutes, for which I’m grateful, and then he said, “I have to go, I’m leaving on vacation.”  “Will you call me when you return?” I asked.  And he agreed, but he never did call me again.  I called him when he returned, and again a week after, and again the week after that, as I got sicker and sicker and scared-er and scared-er.  And he never called again.

People from the church did call, months after that, and they put me on the prayer list and on the (gah!) Angel Tree, and I appreciated it, but I never quite let go the fact that I had been faithful and a churchgoer all my life, and when I needed my church most, when I needed my pastor to come visit and sit with me while I questioned, or reassure me where he could, or even call me back, he wasn’t there for me.

And I left the church. 

I never left God.  I never stopped believing, I never stopped praying, I never stopped teaching my children the stories of the Book, but I stopped going to church.  In fact, I only went there once after that, and nothing happened, and that was closure.

But this spring, something called me back.  I can’t say that it was any one thing exactly, but a confluence of factors.  A friend sharing her faith in Book Club, and talking with her — really talking — about the historical foundation of our beliefs and how they were reflected (or not) in The Red Tent.  Another friend sharing how much she loved her child’s kindergarten, and inviting me to a social event at the church.  I didn’t end up going, as I got sick instead, but I was touched by her thoughtfulness.  Our kindergarten plans falling through, as the public school we’d anticipated attending for years didn’t hold up under the scrutiny of a simple visit.  And then I got cancer.  Again.

And we needed — I needed — to be 100% sure that my children would be raised in the faith as I was, and that they would be surrounded by a supportive community if the worst happened, and I was no longer there to guide them.  My husband is strong and supportive and always there — but he would need support too.  We talked about looking again for a faith community, one with people who talked to each other as they passed, who banded together to support the elderly and those in need, and one where we could use our gifts and help others.  One that loved children, and had throngs of children on Sundays, and supportive parents who looked out for each other’s little ones.  One where we felt closer to God instead of farther away.

We found one.  On our very first visit, we found one.  We found a church with a service where children were truly welcomed.  Where babies were walked in the aisles and toddlers asked questions of their mamas and preschoolers held hands as they walked up to communion with their daddies.  Where children were not an afterthought or noises to be tolerated, but welcomed and loved as children of God.

We fell in love, and we found our church.  I signed up for new member classes, and we enrolled our children in the school.  We volunteered for the open house committee, for the Halloween party, and for lunch duty.  We’re all in.

And this Sunday, I join the church. 

I told you that to tell you this.  Last night, at Bible study, my friend Santa Maria (isn’t that a beautiful name?) asked a question about a verse she’d read that has always been one of my favorite verses. 

“Then Jesus said to his disciples, ‘Whosoever wishes to come after me must deny himself, take up his cross, and follow me.  For whoever wishes to save his life will lose it, but whoever loses his life for my sake will find it.'” – Matthew 16:24-25

In this simple verse, I was reminded of something very important.  (And my atheist friends, and friends of other faiths, thanks for hanging in if you’re still here — I love you. You know that, right? I just need to work this out in words today.) 

Having faith doesn’t mean that we will never encounter evil.  It doesn’t mean that we’re so blessed we’ll never get sick, even very sick. It doesn’t mean we’ll never get depressed, suffer from post-partum depression, or be hurt by others.  It doesn’t mean that at all.  We all have our burdens, our difficulties, our struggles that we must find our way through.  (I can hear one of the adults from my youth saying with a sigh and a Southern accent, “We all have our crosses to bear.”)  Is it hard to leave it behind and persevere?  Sure it is.  It’s hard beyond words.  And maybe, just maybe, that’s because some struggles are so big that we can’t just leave them behind and walk away. 

As hard as I try to pretend I’m healthy, I still sleep every afternoon so I can be awake to put my kids to bed at night.  As hard as I try to move beyond illness and talk about other things — anything else — with my friends, the cancer is still there, and still eating away at me even as we laugh or cry or chat about kindergarten drama.  But maybe that’s the point.  Maybe — and I’m no priest, so please bear with me as I work this out in my head and heart — maybe the burdens are still there.  But instead of focusing on them and wailing over what has happened to us, we are to instead take them up, sling them over our shoulders, and follow the path that He has laid for us. 

And with this post, I know I risk losing readers.  But I promised to always tell you the truth — my truth — about how cancer is changing me, and keeping that promise means more to me than pageviews.  Today, I’m taking the risk, slinging the cancer worries over my shoulder, and trying to return to the right path.  Thanks for listening, and for all the prayers that have been said on my behalf over the past few years.  I don’t deserve it, but I appreciate it with all my heart, and I wanted you to know that it’s working.