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.


Ready for Summer!

May 27, 2011

Susan May 2008, post-surgeryHere at the WhyMommy house, we are totes ready for summer!  We have our flip flops, our summer t’s, and our rashguards all out and ready for action — and this weekend we get our first taste of the lazy hazy days of summer.

What’s a rashguard?  I was asked that twice this week, so I want to show you.  You can see the general look in the picture at the left, one of a very few that we took after my double mastectomy, when I was nervous about going to the beach with the beautiful people.  I had lumps and bumps everywhere after surgery — except in the places you’d expect.  But I wasn’t ready to give up on the beach or the pool forever.  In fact, we were headed to the beach to relax and recuperate!  After some conversation on twitter and the blogs, we came up with this solution — and now, I’d recommend it for anyone who’s tired of feeling overexposed at the pool.

A rashguard is like a t-shirt made of swimsuit material.  You can get them fitted to your body for serious swimming or looser (unisex style) for additional coverage of post-baby tummy or post-mastectomy scars.  I *adore* the rashguard look and the ease of which the kids and I can get ready for the pool – there’s no struggles with vast quantities of sunblock on their pale tummies and backs anymore, or worries about missing a spot, because except for their limbs, neck, and face, they’re covered!  We can be ready in a flash — everybody throws on board shorts (the boys) or bikini bottom (ok, that’s me) and their rashguard t, and we’re off to the pool!

Ah, summer.

This post inspired by Curvy Girl Guide’s Project Real – National Swimsuit Confidence Week!  Real women all over the internet are donning swimsuits and showing the world that it’s ok not to be perfect or to look just like the models in the catalogs.  The project is popping up on blogs all over and has even been covered by Marie Claire!  I’m not part of the campaign — I’m just a fan!  Let’s get back in the pool! 

… better than I deserve.

May 26, 2011

Susan, happy with friendsYou know those folks who when you say “hey, how are you?” in greeting, answer “better than I deserve!” and you never quite know what to say?  Yeah, me either.  But today, that’s all I can say about the week.

Laughter and margaritas (happy, Kristen?) in the country on Saturday, work on Sunday, finished chapter on Monday, dinner with book club/moms club moms on Tuesday, tea and chocolate date with Jessica and Jean and Kristen and KATE FROM NEW ZEALAND on Wednesday, t-ball for Widget, Mom’s full attention for Little Bear, and today there’s chapter research and lunch duty for Widget and party for Bear and then the summer starts to begin in earnest.

And we’re good.  We’re so, so good.  The kids are delicious, and I’m back to “parenting” instead of just “managing” to hang on in the madness of the end of the school year.  Finally.  We don’t always do amazing things in the afterschool hour, no, but we do some days, and the other days we just play near each other while mommy works or gets down on the floor and plays with the boys.  Because I can right now.  I’m in a good period, and even preschool pickup doesn’t tire me out completely.  I can do it AND play when they get home, if I don’t exert myself with the chores in the morning.  So we’re in a routine now.  Write in the morning, lunch with Bear, write in the early afternoon, pick up and play with kids, easy dinner, put kids down, and then work again before a dip in the pool.  What an amazing life.

And spending so much of it with friends lately?  So wonderful.  I am so lucky.  You know, this is never the life I would have asked for — but it has so many good parts, and laughing with friends and playing with children and quiet time with my husband make the rough parts easier and the easy parts full of joy.  And there is so very much joy.  Jessica’s baby Alice, for example.  I held her again yesterday, and she makes my heart sing with promise for the future.  She is so loved, by her parents, by her siblings, by her bloggy mama aunties — and goodness will follow her.  I can tell.

As Kristen likes to tease me, suunshine and rainbows follow me everywhere.  When I hold baby Alice, they multiply.  She is such a blessing to her family and friends!

In other news, the pool is finished (oh, floating in it is heaven — my hip slips back into place, my aches are soothed, and just for a little while I can forget my limitations), the sunroom surrounding it is being shingled (when the guys show up, they do great work!), and yesterday I bought new plants at Johnson’s Nursery.  PERENNIALS. 

Think about that one for a moment!

The picture on this post is from yesterday’s tea and chocolate date.  I love the full picture so much but we all have different levels of privacy for this blogging thing and just like I don’t post pictures of my kids (which makes posts like this week’s happiness look way too self-centered — sorry about that!), not everyone likes their picture on the web.  So I keep pictures of book club, anonymous and pseudonymous bloggers off the internet, but I do keep them in my heart.  Maybe you can tell from the cropped picture above how happy I am to be with friends.  Trust me when I say their smiles are big and bright too.

So how am I doing?  Better than I deserve. 

And I’m so, so grateful.

If you have a moment to pray or cheer another cancer warrior on, could you please lift up my friend Jenny?  She is battling her tumor Gertrude again, and the Xeloda is hurting her, like it hurt me last Fall (luckily for her it appears to be working!)  She blogs at Get Out Gertrude and twitters as @jaydub26.  Thank you.

I thought I was too tired…

May 22, 2011

just a field of buttercups

… to meet up with Stimey and UpsideBackwards Kate this week, but I went anyway and had a wonderful time with Kate, a best-friend-I-just-hadn’t-met-yet, and Jean, who I adore and admire and puts up with me whenever we can remember to get out and playdate.  We three talked and talked like old friends, which of course we are, thanks to the wonders of the internet, blogs and twitter, and we noshed on Whittiker’s dark chocolate and kiwifruit (not “kiwi,” we were told by the Kiwi, and thankgoodness that got straightened out right off!)  Kate brought wonderful New Zealand picture books for my boys and chocolate for us all.  (I brought nothing, because I’m a bit of an idiot that way, although I did consider stopping along the way and picking up Rita’s to share — but then reconsidered, because I think it’s actually Italian ice, even if it is a Maryland-ish treat.  Oh, drat, where was I?)  It was a lovely afternoon, and we took a picture of us all smooshed up together to treasure and remember it by.Susan Niebur May 2011

… to go out after dark, while Daddy read the kids to sleep, but I went anyway, bolstered by your encouragement, and I got an awesome haircut Thursday night.  It’s wet right now, since it’s morning and all, but I’ll post a pic asap.  I really like it — it’s on the long side of being really short, and it’s just perfect.  Oh, wait, here’s one if you don’t mind a little (lack of) cleavage and visible radiation burn:

… to rewrite that chapter for my book, but I stayed up late too many nights at the computer and I now have actually written the story of Stardust.  And I’m happy with it.

… to playdate with R and her girls, but it was absolutely wonderful to sit and talk and look at the forest, to swing the children endlessly, and to play baseball with my boys and her girls.

… to babysit earlier in the week, but of course I wasn’t, because they’re BIG KIDS NOW and L and Widget and Little Bear just played and played and were angels together.  Silly me.

… to take Widget to soccer practice, but I went and sat in the sun with my friends C and M, and we had a wonderful time watching the kids play and Widget score SIX GOALS and C2 coach and afterwards she told me that my son was really good at soccer.  Which was awesome.

Susan Niebur, midair -- on Kristen's rope swing… to go to Kristen’s yesterday, but OMG it was fun and we were so busy talking and laughing and eating and swinging from the GIANT ROPE SWING IN THE SKY and squirting Redi-Whip in each other’s mouths and laughing and cuddling the littlest one (he is so yummy!) that the iPhones just sat on the table (if we weren’t taking pictures as the Mamarazzi – like the one on the right that shows E swinging SO FAR off the ground!) and we didn’t tweet once.Kristen's rope swing

… to make a picture album earlier this week, but it was not that hard at all, and I’m setting a goal to make another one this week featuring good times we’ve had with friends, because really, isn’t that a major part of growing up?  I am really excited about this and hope I took enough pictures along the way to remember the incredible mix of playdates and parkdates and museums and field trips and just playing in the back yard together with so many wonderful, loving friends.  Four years ago, I had my worries — but I’ve tried to cover the worries with love, and it’s working out, you know?  All in all, it’s been a good childhood, and I want my kids to remember all the wonderful good times we’ve had together.  It has been a GOOD childhood.

… to leave the house, but look what all I would have missed.

Field of buttercups