Goodbye

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)


How did we get here?

January 22, 2012

– A conversation with my husband, shortly after arriving home this afternoon with fresh oxygen tanks, spots on my liver, fluid pushing around my lungs (likely filled with cancer, as are the tumors inside) and at least one broken vertebra that must be healed before we resume any kind of treatment. –

How did we get here? I asked my love, across the bed strewn with children’s toys, books, and an oxygen tank.

We got here because of your amazing strength, commitment, and love for your family that you have shown since you were diagnosed – almost 5 years since diagnosis, 4.5 years since we were afraid it would end, 3 years after most IBC patients make it, all because of you. The medical details don’t matter. Our life has been a nonstop adventure.

Nonstop. I agree. And because of you, always at my side, supporting me, joking with me, taking me to yet another appointment and holding my hand. Kidding me about the speed I drink the contrast shakes, and raising eyebrows with me as the tech’s hands jiggle as he tries to place the line.

What, aren’t you going to blog anymore goodbyes?

I am not blogging goodbyes. I am not saying goodbye to you yet. I won’t.

You will have to soon. Hospice comes in an hour, and since I need Pallative radiation to fix the latest spine fracture, I can’t go to treatment anymore. We need hospice, at least for a time.

No matter what, you deserve to feel better right now, and you deserve a chance to enjoy family and friends, and if that means we use hospice, or go to the moon, or paint you green, then we will do those things. I have dibs on the paintbrush.

Green’s really not my color.

I have not yet encountered a color you could not make yours. Purple?

Purple. I’ll change clothes and listen to her when she comes, but I can’t promise that I’ll be sparkly to the hospice lady.

I’m willing to bet the hospice lady is not expecting to be greeted with confetti and song.

Good point. More tomorrow, my friends. I hope.


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,
Susan


Looking for help? (cancer)

January 13, 2012

I’m still fighting pneumonia and the associated fatigue, but I received the most beautiful scarf in the mail from the people at L. Erickson’s Good Wishes program, which sends a silk scarf or head wrap to anyone losing their hair as a result of illness or treatment.  I’m assuming they mean cancer only and not alopecia, but it couldn’t hurt to ask!  Thank you, Good Wishes!

I’ve updated a resource page at Mothers With Cancer accordingly — check there if you’re helping a cancer patient and looking for resources for cleaning, cooking, hats and scarves, lymphedema sleeves, wigs, makeup, and how to organize to help a friend with cancer.  I don’t know what I’d have done without my friends this year and in 2007 – consider yourselves hugged!

Mothers With Cancer: Help page


Pneumonia.

January 7, 2012

Pneumonia. Again. Still. Unable to stop the coughing, I asked the chemo nurse this week who I should see for it – my primary care doctor, who tends to overreact and send me to the ER for lung trouble, or my oncologist, who is primarily concerned with the cancer, not other worries. She responded that I did the right thing already, as she didn’t want to give me chemo if I was already sick.

The nurse popped back in a little while later, letting me know that my doctor had ordered a chest x-ray, which we could do at the hospital before we left that day (after chemo, which we could have).

My oncologist called last night with the verdict: pneumonia. My lungs still have gunk in them and I have to lay low for a little while, taking more antibiotics, using the inhaler and such to
recover. What a lovely addition to chemo this week.

I’m very tired. Slept til 1 pm yesterday, but today I was awake a little longer, if not any more productive. Just tired. and drenched from the return of the hot flashes, which reappeared when I restarted chemo this Fall.


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.


Follow

Get every new post delivered to your Inbox.

Join 530 other followers