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)


Savoring three good days, and Christmas Eve

December 31, 2011

By the grace of God, my good days lasted through the Wednesday before Christmas, enabling me to spend time with my dear friend Marty; go to prayer group as just “one of the girls,” standing when they stood, staying to the last; wrapping presents with my husband; leading our family’s Jesse Tree devotions; and going to school Wednesday to watch Little Bear’s nativity pagent.

The little kids were so good!  They each had a part to play, and they took it seriously for God.  Little Bear was “a little shepherd, with JG!” his best friend, as he never hesitated to remind us.  The two of them cracked themselves up a bit, and I have pics of a cunning little smile peeking out of the string-tied headdress, but it was all in good fun.  I had fun too, delighting in their success and joyously hugging so many of the mamas I had seen only via email and facebook this year.  Members of my prayer group rejoiced with me a second day as our kids ran around afterwards, celebrating the hour or so of freedom – at school with friends, but free to play as they wished, securely in the care of loving teachers and parents.

And then I rested.  Thursday, Friday, and Saturday were miserable, catching up from the times I had joyously spent in the company of friends and family (my parents for three weeks, and then my husband’s parents for two weeks and counting).  I lay in bed, discouraged, sad, and with pain wrapped around my sides and straight through my bad spot (where the terrible pain indicates cancer) as if pierced by an arrow right where my spine meets my waistband.  Nothing worked on my pain, and I cried and cried alone upstairs for much of the days, passing the time reading scripture and novels alike, searching for something to inspire me, to distract me, to pass the hours, and to give me strength.  The times I was able to go downstairs with my family were delightful, if too short:  making myself comfortable enough with the fancy chair, pillows, and oxygen; playing checkers with 7 year old Widget and teaching him chess (at his request!); and just sitting by the lit-up Christmas tree overflowing with presents despite our rule this year to just choose three….

I just had to tough it out, waiting for methodone to take over and reduce the pain, aided by fentnyl for breakthrough pain (as if it were ever not breaking through) — but the medicines’ effectiveness lessened as my tolerance increased.  Truthfully, I ought maybe to have stayed in bed Saturday evening, but I couldn’t.  Saturday night – Christmas Eve! – was the culmination of so many things for me. It was a goal, you see.  A goal set just about a year ago, when we were told that the cancer had spread to bone, first the ribs and then the spine, neck, and hips, and the pain came back, and we were gobsmacked by the setback that began as a year of treatment and worry, changing attitudes and trying to understand what our “new normal” might be.  This year was to be Widget’s year in the Christmas Eve Nativity play, you see, and we had looked forward to it for so long – we already had plans for the grandparents all to visit our house this year at Christmas, for the first time ever – and I remember crying in frustration a year ago that I might not be here to see it.

But I saw it.  I picked myself up off the bed and put on my pretty clothes, and went to the church with grandparents from all around.  We saw Widget pass by in his costume, and, I have to say, there’s never been a finer Joseph since the very first one.  He was so handsome in the dark maroon fabric, serious face giving way to twinkling eyes as I surprised him by stopping by the children’s prep room before the church service began.  He ran up to me with a great big hug, and, as I saw him start to get overwhelmed by the excited children, I was able to whisper to another parent that that happens, and if he starts trying to control things, it’s only because the ruckus makes him nervous.  The room quieted (coincidentally); I left, and Widget later joined us in the pew.  As the priest stood up to read the story of the nativity, the little children took their places around the church.  Widget found his place in the back, standing next to the little girl who was to be Mary, and they walked slowly and seriously down the aisle to the altar.  Finding a manger there, the little children knelt and listened while the story played out and the others came to worship the Christ child, symbolized of course by a doll.  Afterwards, I was so proud of my little boy turned bigger boy, and when he sang the carols from the hymnal with me, I might have shed a tear.

I led a prayer myself later in the service, the same one used to pray for the sick and dying each week, and it was right and good.  And then, just before we walked out, singing Joy to the World, a visitor to our church came and knelt at the manger, bringing his gifts first to the symbol of the Christ child, and then, we hoped, to children everywhere.

Santa kneels at the Nativity

The next week I would pay for being out that night, exerting myself beyond where I thought I could, but it was worth it to see my beautiful Widget be so reverent and grown-up, to sit with Little Bear on my lap and worship God, and to look fondly down the pew and see all of our grandparents together for a day (not to mention visiting friends!), and for the next day’s family celebration besides.

The week has been at times horrible and at times terrifying, but my medicines are again starting to catch up to the pain and I have a new commitment from my doctors.  We will control the pain.  They will control the pain, using new approaches and stronger medicines, and they understand now how very terrifying it is for me to work so very hard and to endure so much for so long in hopes of reaching a goal (sitting in a chair with minimal pain; reading, writing, and playing happily with my children; and eating dinner each night with my family) that is far below the quality of life enjoyed by most, and far below what I consider an acceptable exchange for giving up days each week for chemotherapy and other infusions, losing my hair, my independence, and my ability to leave the house without someone driving me (I’ve only driven once since July), and suffering the pain of metastasis in my bones that sends me to bed in tears one or many more times a day.

To survive now, I need to come to terms with this exchange, and to find out what I can do to make the days worthwhile, so I can sleep peacefully at night while we wait for the medicines to heal – or at least to relieve pain that the cancer has caused.  I am trying to shift my perspective from anger that my future that has been taken from me into gratitude, again, for all the days that I have been given since my cancer metastasized and indeed, since my initial diagnosis with breast cancer in June of 2007.

Our Christmas card this year was stuffed full of pictures of the good times – so very many good times that would never have happened for me without the medical advances enabled by cancer research, the confidence that comes from belief in a loving God and the existence of tomorrow, and a supportive and loving family that loves me for what I can do, not judging when I can’t.

The gift

December 20, 2011

One of the most difficult things about being homebound with a serious illness (or two) is remembering that (most likely) things will get better.  That you will have enough energy to go up and down the stairs again.  That you will be able to play with your children again, and not just from your pillow or your chair.  That you will soon put away the oxygen, and plan days that include leaving the house.  That you will be able to do, and see, and go … and be YOU again.

The past two weeks have been terribly hard for me.  I don’t do sitting well.  I tried to fill my days with learning about my new tablet computer (love it!), with reading classics (like Andrew Lang’s Blue Fairy book – did you know that the real story of Sleeping Beauty has hardly begun when she is woken with a kiss?  In fact the whole castle awakes, and they don’t live happily after – there are ogres!), and with keeping up with the latest on Slate, Salon, HuffPo, and the Daily Beast.  But those diversions were not nearly as fun as they could have been had snuggling into the soft recliner and reading been a choice.

I just wanted to get up and do things again.  Encourage my kids with games and playtime more of the afternoon instead of just homework and learning in the half hour after school.  Eat dinner with my family (I collapsed in bed at 4 or 5 p.m. most evenings, exhausted from the day, and nauseated by warm food after the chemo).  Work on my computer again, catching up on what I’ve missed, and plotting new work for the spring.  Make and address all those Christmas cards (Will they make it there by Christmas now? Who knows?).  But my body didn’t cooperate.  It wanted to sit.  Or sleep.  And the cough just wouldn’t go away.  Every time I went upstairs – or over to the fridge, even – I had to rest, lie down, and use oxygen to get my breath back.

And then, Sunday night, Marty came to visit.  The novena my church family is saying neared its close.  We continued our family time for Advent.  I finished the pill bottle of antibiotics, and I began to recover from Thursday’s chemotherapy and bone strengthening infusion.

That night we talked and talked and talked, well into the wee hours, and when I tired we went upstairs or put my oxygen on.  But Monday — I can’t explain what happened Monday, but after talking in the recliners downstairs for a while, I got up and began to fuss with my fish tank.  It had suffered during my illness too – you can barely see the little guys through all the muck on the walls!  We talked and laughed and scrubbed the walls.  We scrubbed algae off the glass, walking back and forth to the utility sink, and we laughed when Marty almost dropped the tank hood onto the Science magazines below.  We made that sucker shine, and we talked about her getting a fish tank too (before she left, I sent a dozen beautiful guppies with her, sharing new life in my house with hers).  We watched a movie together, The Help, that we’d planned to watch the day of its release in the theater.  We played with the boys, and I comforted Widget after school, when his earache flared, and Marty tried to engage them in a craft.  We addressed Christmas cards, as we do now, the week or two before Christmas, no matter how I’m feeling.  And then we went downstairs and I ate dinner with my family – and I mean ate.  After three weeks of illness, where I lost 25 pounds because I couldn’t even stand the smell of warm foods, I ate a whole dinner, including seconds.  We were up and doing things the whole. entire. day.

And today I feel like a new person.  Wait, that’s not quite right.  I feel like myself again. I woke up this morning ready to go, showering, eating, and helping the boys get ready, starting a blog post when they went to school.  I’m smiling again, and hopeful, and ready to get back on track and start again.  I went to prayer group, alive and alight with the happiness that comes of being reminded that today is a new day, full of possibilities.  Including possibilities of me getting things done again, of games to play and talks to have and maybe even taking Widget to church tonight for practice – for he is going to be in the Christmas Eve nativity with his class!  Today I feel alive again.

I’m bemused by the thought, juxtoposed with the past few weeks, and I laughed out loud as I related it to my friends this morning.  How could such a difference happen so fast?  And yet, it wasn’t fast at all, was it?  It took days of sitting and waiting and resting, weeks of praying, and treatment after treatment at the hospital.  I believe in prayer.  I believe that medicine works and that my treatments will be successful in extending my life and improving the time that I have left here.  Why, then, was I so surprised yesterday that I finally felt like myself again?

On Sunday morning, I sat quietly with my husband before they left for church.  We were grateful for the day, another day granted to us after such a scare at the hospital, and he whispered softly to me with amazement that I was still here, saying, “This Christmas is God’s gift to us.”  Yes, it is, I agreed, and sent him off with a kiss.  We will celebrate this Christmas together with joy, just as we celebrate God’s gift to the world over 2000 years ago.

Chocolate Chip Math and Button Box Sudoku

November 14, 2011

first grade workThis week has gone really, really well.  I had my first treatment of the new chemo (and I’m so relaxed about it, I don’t even remember its name) and recovery this weekend, and I’m back on track for a good week this week!  But first, moments that I must share to remember, moments with my little ones first, and then a big ol’ braggy bit at the end.

Chocolate Chip Math

Each day, I rest from 12-3 so that I can be bright and awake when my kids come home after school.  We have a snack together and talk about school, then do homework and extra learning before I release them to play or watch a little tv at 4 (and I head back to bed for a bit so I can be up again for dinner).  Extra learning is just what it sounds like, a little extra learning on top of their day at school, time when we can learn together, adding new concepts for them to think about.  I try to riff off of current events, like mapreading if we watched a tv show about baby penguins in Australia, or math drills at Widget’s request.  Little Bear likes to join in the extra learning, pulling out his dot-to-dot workbook if Widget’s doing his workbook, and he feels so grownup about it.  I love that he’s proud of what he’s learning, and so I’m starting to make lessons just for him.

Enter Tuesday afternoon and the chocolate chip snack.  The kids were in high spirits, and, with a twinkle in their eyes, asked for chocolate chips for a snack — “just” chocolate chips.  Well, I didn’t have a good reason why not, so we sat down together and picked out a few chocolate chips for each plate.  Then we got a little playful with the chips, asking little brother to count them (counting to 6 is easy – he doesn’t have a problem until 17, but I was *not* doling out that many chips for counting!) and big brother to group them into groups of twos and threes.  Big brother Widget is just learning about multiplication, so we manipulated the groups and talked through some of the early ones.  2 groups of 3 = 6.  3 groups of 2 = 6. How can that be the same?  That’s right, the commutative property that his teacher taught him with math last week.  What if we only have 1 group of 6?  Let’s say the sentence out loud: 1 x 6 = 6.  And so on and so forth, with numbers changing as chips slipped into eager little mouths, proud of their right answers.

Little Bear joined in, wanting to be big like brother, saying the only math sentence he knows, “2 plus 2 equals 4!”  We celebrated that with him and showed him what it meant on the plate (he memorized it long ago, because it makes the Grandmas smile and fuss over him).  Using the chips, he could easily see that 2 plus 2 does equal 4.  From then, we were off to the races!  1 + 3 = 4, 2 + 2 = 4, and so on.  And then when he snuck a chip off the plate, what else was there to do but subtraction?  All of a sudden, 4 – 1 =3!  And 3 – 1 = 2!  And 2 – 2 = 0 as he stuffed the last two into his mouth.

We collapsed in giggles, having had a wonderful time with each other, learning new concepts and reinforcing old ones with chocolate chip math.

Button Box Sudoku

Widget, my 7 year old, is fascinated with numbers.  He also loves to peek over my shoulder at Mommy’s game, which is often crossword puzzles or Sudoku.  He’s been asking to learn crossword puzzles, and that’s soon, but I’m wondering if maybe his little brain would really enjoy Sudoku too.  The thing is, although the game is about manipulating numbers in a grid so that no number is repeated in any row or column, Sudoku actually has no math.  So, in theory, you could play the game with other shapes, with coins, with legos or Polly pockets accessories, or simple buttons.  I pulled down Grandma’s old button box yesterday and we set to play.

First, Widget chose five different color buttons (blue, green, red, pink, and white).  He selected five of each from the button box and laid the first five out in a column, showing me that he could do that with no repetition.  Then, I challenged him to make the same kind of column again, but without repeating the color of the button in the column to the left.  This wasn’t hard for him; he caught on quickly.  The third column went easily as well, but the fourth?  Ah, now this became tricky.  I watched his little brain work it out as Little Bear and I sorted buttons at the table, choosing our favorites and getting the others ready for a good wash (Grandma’s button box was a little rusty. Ew.).  He manipulated the buttons swiftly and surely, and got both columns four and five to work out, offering me a delighted high-five at the end of the game.

To play again, we added a set of silver buttons and one more of each color and set out to make a 6×6 grid.  This Widget accomplished quickly and easily, going back just a few times to rearrange earlier columns as needed.  I think we’ll do this a few more times and then he can join me in Sudoku next Friday and Saturday as I check back into bed and recover from chemo.

A little bit of bragging – for the Grandmas and faraway friends

The kids are doing great.  Widget brought home his first report card this week and got Es on everything but language arts.  We are so proud of him.  He told me this morning that he thinks he can get an E in everything by the end of the year.  I encouraged him, of course, but reminded him that what matters most is that he is learning, that he is a good friend, and that he is kind.  We’ll work together on the rest.

Little Bear has big news!  He lost his first tooth on Saturday!  He lost it in a swordfight with Daddy and Brother, which is just about right for this happy little sprite, always ready with a toy or a game, always asking us, “which one would you like?” and then settling into a game of legos, of cars, of battle, or just settling in for a hug.  He keeps me company while I’m resting with these hand-size games of his, and I am never too tired to fly the helicopter over the scene or to race the bad guy car away from his multitude of fire, police, and rescue trucks giving chase.

Oh, and one more thing. About that cancer.

We talked about Mommy being tired this weekend, and about the cancer.  I don’t know how it came up, but it flowed naturally and I answered their questions as many times as they wanted to ask.  I told them that I have new medicine now to fight the cancer, and that my back hurt so much on Saturday (they could tell – as LB would say, “duh..”) because the medicine is fighting the cancer cells, and the cancer cells are trying to fight back.  The cancer cells get angry (inflamed) and so it makes Mommy tired, and Mommy’s spine hurt for a while.  But that’s good news, because the medicine is stronger than the cancer, and the medicine will win.

Both kids brought up their fists and pretended to fight the cancer with me for a minute.  My eyes locked with my husband’s, and we finished the conversation, reassuring them that Mommy is doing the best she can, and that you boys are BIG HELPS.  That bringing Mommy drinks to help flush the medicine through her body is a big help, and that playing gently with Mommy instead of sword-fighting gives her body time to rest and get better.  And the thing that helps most of all is just to have fun together and to hug each other, because that makes Mommy feel strong as her body fights the cancer.

It came up again this morning, in a natural way, as I helped LB dress for school, but I’m not as worried as you may think.  After I answered his question and reassured him a bit, I asked LB how he was doing with all this: “Are you okay, Bear?”  “Of course, Mommy,” he smiled.  “I just love you.”

And that’s where I’ll leave it today.  The kids are ok.  This cancer-fighting chemo/recovery routine is becoming normal for them now, and while we have our moments (“Why can’t we go stay in the hotel this weekend?” the kids pouted after we had to cancel our trip to Cousin Andrea’s wedding this weekend (the horrendous pain in my spine made it very difficult to sit up and an 8 hour drive impossible)), it all comes down to love.  These days are far from normal, but the moments, ah, the moments, are perfect.

The love of my babies inspires me to fight each day, and to remind them each day how very much they are loved.  But enough of that for now.  Pass the chocolate chips — we still have a lot of living to do!