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,

Tired and hurty and scared.

August 17, 2011

I’m not always brave, you know.  Despite your lovely comments, I feel less and less brave these days, these days I spend in bed, resting up for the times I can get out of bed and spend with my kids – playing board games, or cars, or legos, or, more often than not, having them crawl back into the bed with me and cuddle while we watch Phineas and Ferb or How It’s Made or Build It Bigger – tv that captivates all of us, and is the background to Mama snuggles, so that no one notices how quiet Mama is again or how we’re not going out again today.

The days still run into each other, one after the other a mix of naps and rest and tv and computer games; Widget and I are playing an online game called City of Wonder together; I’ve let him set up his own account and make his own decisions and adventures and mistakes, and in return he asks me for advice and lets me peek over his shoulder.  It’s adorable to see him so grown-up, and it lets him stretch his wings.

As long as I pace myself, I do okay, unless I’m late taking one of my medications.  The oxycontin I take around the clock needs to be at a steady level in my bloodstream to control the cancer pain – cancer has replaced bone in several vertebrae, and in one set they mash together, squashing a nerve and causing the pain that appears to be in my ribs.  If I’m late taking the medicine, the pain starts to hurt and then gets quickly out of control, taking me from “fine” to OMG I’M GOING BACK TO BED NOW in just 15 minutes.  It happened on Monday, when Jess and Kristen were here, and I went downhill pretty quickly.  I took a supplemental medicine for breakthrough pain, but when it hadn’t worked after an hour, they put me to bed, and let me cry, and spill my fears out on them like a dropped sippy cup that broke its lid.

It wasn’t pretty.  It often isn’t pretty.  It’s so ironic, isn’t it, with all the pretty pink ribbons and cutesy campaigns urging hope — that the real life of a cancer patient has nothing to do with pretty, and everything to do with blood and poison and knives and fighting and rest that doesn’t take away the tired.  Gayle Sulik says it better than I do – her book Pink Ribbon Blues demands that we peel away the pink and ask for the facts underneath.  How much of this product or promotion goes to research?  For only research will result in the cure we need – the cure we all need – for we’re learning now that even women who are diagnosed today, if their cancer will metastasize to the bone or lung or liver, it most likely already has.  The seeds, way too small to be detected at this point, have already been sent to near and distant body parts, and they are already working to take the woman’s cancer to late-stage, even as she reels from the shock of a new diagnosis.

They didn’t know that when I was diagnosed, just four years ago.  They said that we could fight off recurrences, with diet, and exercise, and nutrition.  And while that good behavior may postpone recurrences (we don’t know) or postpone initial onset of disease (as it should – make that body HEALTHY and it has a better chance of killing those nasty stray cancer cells popping up in bodies everywhere), in the end, if the cancer was destined to spread, it probably already has.  And that, my friends, is hard news to hear.  Damn near impossible once the cancer is in your own body.

This isn’t easy and fun to read, I bet.  I’m sorry about that.  I’ve tried not to write until I could write something pretty, something grateful about the fun times I had at Type A Mom, or the beautiful dress made out of stars that Elena and Stacey and I found together, or the magical moment that the DC Moms had with the Bloggess’ red dress, now on its way back to her, but I’m preoccupied these days.

I hurt.  I’m tired.  And when I am so tired that rest isn’t enough, and the hurt is so deep and has been there for so long now, I get scared.  Really scared.  About the future.  About the future of my boys, and who will care for them when I’m gone, and how soon that might really be.  About what I should do to prepare (laundry? photo books? letters for each of their birthdays until they turn 21?) and when I should start.  About how they’ll take it, and if they’ll let themselves cry, and when they’ll be able to stand tall again and know that they. are. enough.  That Mama loves them with all her heart, but they. are. enough.  And they are ok.  They will be ok.

I know they will.  I know I will.  I’ll gather my strength and buck up and try again to do this gracefully and bring happiness, not tears, to my friends and colleagues and readers, but right now?  I’m tired, and hurty, and scared.  Three words that kept coming to mind as I pulled the blanket over my head on Monday and tried to rise above the pain I felt, even hours after Jess and Kristen left and my husband came home early to comfort me.  But it’s a cycle.  My body is tired from fighting the cancer cells inside, and their presence (and bone loss) causes pain.  And when I’m tired and hurting, my defenses slip and the fear comes wooshing in to join them.  And then that’s all I can think about.  Or at least it was, until the door opened late Monday afternoon

and my babies crawled into bed with me for a snuggle, seeking comfort, and I almost laughed in relief that I could wrap my arms around their little shoulders, and hug them tight, and snuggle as we turned on the tv and they began to relax and laugh again as we watched cartoons together and reveled in that word – together.

My friend Elena has started a new web site, Just Be Enough, which is beautiful in concept and in execution, and today she has a new initiative – by leaving comments or links on Monday’s posts this month, you can help give cancer patients like me (but without my resources – I am really so, so lucky) a beautiful photo book to help each remember the good times, to encourage them in the bad times, and to help their loved ones remember the good days, always.  It’s stunningly beautiful, and done in partnership with Bellflower Books and Crickett’s Answer for Cancer, who you know from our lymphedema project.  Please go read more about the memory book project, and support her, as she has supported me so many times.

Thank you.


July 25, 2011

Admitted to hospital for better pain management. Nurses couldn’t get an IV in (chemotherapy shrinks the veins) and my blood pressure rises to 181/110 when I stand. So tomorrow morning, they will place a port in my upper chest so that IV access is just a stick away.

They’ve upped my pain meds to oxycontin + dilauded. Tomorrow I’ll have x-rays to see if anything’s broken and meet with my oncologist to decide on a plan for what to do about the spots of cancer they saw in the scan. I don’t know how many or how much – there’s time for that tomorrow.

Tonight I rest and thank God for the friends and family who watched my kids today and those who surprised me with a visit already. Tomorrow morning I have the surgery I’ve dreaded for four years (probably needlessly) and emerge with essentially a small pincushion hooked into my artery. This will make treatments easier. It will make hydration and blood draws easier. But tonight, it doesn’t feel very easy at all.

Please pray with me for healing.