A little trouble

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,
Susan

Savoring three good days, and Christmas Eve

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.

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.

“It’s not fair!”

How many times have I said those words this year, or in 2007 with my diagnosis?  How many times do we all think those words as we haul yet another load of wet laundry out of the washer and into the dryer, or sit resignedly in the car for yet another commute to work, while we imagine that our next-door neighbor has it so much easier?

It really isn’t fair, is it?  He gets to send his laundry out to be done by strangers.  She has a nanny AND a lawn service.  They get to go away on vacation after vacation, and she had cancer, sure, but no recurrence.  There’s always someone who has it better than we do.

And yet, were any of us promised a perfect life?

Listen to this story:  Once there was a man who needed some work done on his land.  He went out early in the morning and hired laborers to work that day, for a fixed wage.  When he came back to town later in the morning, he saw more men standing around and hired them as well, saying he would pay them a fair wage.  At noon, he hired another group of men, and again three hours later.

At five o’clock, he ran into more men standing idle in the town, and he asked them, “Why have you been standing idle here all day?” “Because no one has hired us,” they said, so he sent them to join the other workers.  That evening, when the work was done, his foreman paid the workers, starting with the last to be hired.  They each received the daily wage that was promised to the first.  Each group was paid, in order from last to first, and they each received the same wage.

Those who were first hired grumbled, saying, “The men who came last have done only one hour, and you have treated them the same as us, though we have done a heavy day’s work in all the heat.”  The landowner replied, “My friend, I am not being unjust to you; did we not agree on one denarius? Take your earnings and go. I choose to pay the lastcomer as much as I pay you.  Have I no right to do what I like with my own? Why should you be envious because I am generous?”

This story comes from the Bible, from Matthew, Chapter 20, and Jesus ends the story by saying, “Thus the last will be first, and the first, last.”  It is a difficult reading, and one that I have always had trouble with.  I was raised by parents who believed in a strict work ethic, and when I complained, my father intoned the maxim “to whom much is given, much is required.”  We were lucky, they taught me, to have a house to live in, good food to eat, new clothes to wear, toys and books – so many, and so much, and so I must go forth into the world and give back more than I was given, to help others as I could.  I have lived by that maxim, and I am teaching my children by that maxim, and they come back with the same rejoinder: “It’s not fair!”

And we struggle.  But this parable, taught in church last week and again in my new prayer group (and thank God for them, because I feel already blessed by the experience and the people therein), teaches us something very interesting, and after a week of challenges, I think I finally understand it.

Life is given to each of us.  We each get one shot at this sucker, and we are never really told that it will be fair.  We each get one life, one daily wage, and that’s it.  The guy next door gets one life to live.  The mom down the street gets one too.  No one ever promised us the same life, the same opportunities, the same blessings, or the same time to live.  No one ever promised that.  We are promised one opportunity, one life, and how we live it is between us and our Creator (I believe).  There is no comparing.

And so when one of my little children comes to me after dinner and say, “But Mama, he had a fruit snack earlier today too! That’s not fair!” I am able to stand my ground and say, that’s right, it’s not fair between you two.  You haven’t gotten exactly the same today.  But you asked me for a fruit snack, and I gave it to you – did I not keep my word?  Didn’t you get what you were promised?  As they reluctantly agree, I remind them that that’s what we learned on Sunday, and that it doesn’t do any good to compare what one gets to his brother, because it may not be fair.  But I will keep my word to each of them, and they will have what they need, and treats besides.

Now I need to take the passage to heart, and to stop raging on days when I don’t leave the bed (like yesterday, because of pain and great fatigue), “It’s not fair!”  Because it’s not.  That’s true.  I can’t imagine a scenario where anyone would be happy to get cancer at 35, and think oh, yeah, well, that’s fair.  That’s ridiculous!  But I am coming to terms with it, and it’s easier when I stop comparing my life to others.  I wasn’t promised the same life as my neighbors.  I was promised a life.

As I sat and talked to Jessica this morning, I reminisced a bit – I was so lucky, to be able to go to college, to study, to move here to work for NASA, to then get my dream job – the job I was ready to work my whole life for – of overseeing the competitions for new space missions, and for being the scientist at NASA Headquarters responsible for a mission to outer space.  I had that job for five years, and I absolutely loved it. I couldn’t imagine what would come next.  I wanted children.  I was so lucky that I was able to have them, my beautiful, wonderful, smart, and kind little boys.  When I got ill, I begged and pleaded and prayed that I could get the oldest one settled in kindergarten, on his way to a life of loving school, and the littlest, then barely more than a newborn, in a preschool that he loved, with support from friends and teachers and the families of his friends were anything to happen to me then.  I couldn’t imagine that I could live that long, but I prayed and I tried and I kept fighting.  These dreams have come true.  The boys are settled into a wonderful school, where they are loved, and supported, and safe, part of the school family, and they spend their days as they should, learning and playing, and when they come home, we are lucky enough to spend time together, with milk and cookies, then doing homework and practice on their letters (Widget wrote 14 thank-you notes over the last two days!) before they have a little tv and I rest again for that hour before Daddy comes home for dinner and we are all together again.

I have everything I ever wanted.

Am I sometimes envious of others, who may get forty-plus more years on this Earth than I?  Sure.  But I was never promised 80 years. I was promised a life.  And boy, have I had a pretty incredible life.

I’m not done yet, but I am finally coming to understanding about the parable and about what I’ve been given, and I am again grateful, for God has kept his promises to me and I have lived the best way I know how.  I have been truly blessed.

A Grocery Store for Tigers

When the kids caught me resting in bed again, I made light of it and invited them to watch a little tv with me.  We clicked through the channels and found nothing that we both wanted to watch, until we saw that Discovery was airing an old-school nature documentary.  Intrigued, we paused, and C joined me as we re-introduced the children to the wild beauty of a nature flick, tigers, gazelles, herons, and all. 

We watched the beauty of the savannah and the tiger leaping majestically through the air in final pursuit of the gazelle, landing with a thud as he broke the weaker animal’s neck and began to feast.  Then my children protested, stunned at the violence of the wild, asking “Why, Mommy?”  Why did that tiger chase the deer, Mommy?  Why that tiger EAT the deer?

Oh, my child.  My sweet, sensitive, sheltered children.  I’ve protected you from the harsh realities of cancer and death for so long that somehow I’ve neglected to teach you about death, and now you are 4 and 6 and shocked that animals must kill other animals for meat.  I remembered to teach you that death exists, as we bought guppy after guppy and talked about fish eating other fish, but your sensitive child minds never made the leap.

So we snuggled in and watched a little more and talked about it, your father at first making light of it, answering, “Because tigers can’t go to the grocery store!”  We laughed and snuggled and broke the hard facts to you gently and at the end you understood that tigers hunt to provide food for their families and for survival, and that we can be sad for the gazelles but happy for the tigers, because they got to feed their baby cubs.

And what you took away from it was fascinating, proclaiming after the movie,

Mama, when I grow up, I open a grocery store for tigers.

I chuckled and hugged you and told you that was a wonderful idea, for it was, and I was so proud of you for thinking of it.  For facing the problem head-on and for answering the violence that you saw with a creative, non-violent solution.  And so we all four agreed that when you boys grew up, we would move to the savannah and open the Niebur Family Grocery Store for Tigers.  Even though we knew full well that you would grow up and understand and lose interest in the meantime, we supported you two, and we took you seriously, and we wanted to help you change the world, to make it just a little better for the gazelles.