February 22, 2011

Neutropenia is a common but yucky side effect that affects about half of cancer patients on chemotherapy or treatment with a biological agent (like Nexavar).  When a cancer patient is neutropenic, it means that her white blood cell count is low and she is much more suceptible to infection.  She is given direction to avoid possible sources of infection, to stay away from crowds, to wash hands and insist that others wash hands before coming into contact with her, and to change her diet to avoid the risk of infection from food. 

All foods must be freshly cooked.  None can come from restaurants or uncontrolled sources.  Bread must be bagged and not homemade.  Cutting boards must be changed between preparation of meats and other foods.  No deli meat.  No deli cheese.  No hand-packed or soft ice cream or froyo.  No soft cheese.  No popcorn.  Nothing from a bakery.  No raw veggies, fresh fruits, except those with a very thick skin (oranges and bananas), or dried fruits.  No spices, salad bars, buffets, or restaurants.

I’m pretty sure the guidelines would say no contact with little children who bring home infections from preschool, but what can I do?  I have two who need me, and one is home sick today.


That’s it. Enough with this cancer stuff.

February 17, 2011

I got sucked in.

and without realizing it, I got stuck in the identity of “cancer patient”. Not astrophysicist. Not change agent. Not super(busy) mom. Not friend, or equal partnered-spouse.

It was an accident. And it was a mistake.

It was a mistake that (along with sky-high blood pressure and racing heartbeat from my trial medication) landed me in the hospital two weeks ago, and that has caused me no end of terrible thoughts as I suffered as my body got used to new heavy-duty trial medication and what turned out to be a kidney infection (or infected kidney stone?) on top of that. I was in bed for almost a week this time, on top of similar trouble just two weeks ago, and it’s not a good place for my head to be. And when even doctors shake their heads sadly at your patient history, it just reinforces that, and I’ve seen a few lately.

I thought, I honestly thought, that I was dying.

But I’m not. Well, no more so than we all are, said my oncologist just now, and I needed to hear that. I needed to hear that a lot.

Yes, I have Stage IV cancer. Yes, again, the fourth cancer in less than four years. Yes, it sucks. Yes, my next PET scan is scheduled for April, and we may see bad things. But we may see GOOD things. There is real hope that this will work, and I have to cling to that in more than a pretty little poetic way.

But more than that, I need to forget about it sometimes too. I need to spend more mornings doing things like making homemade frosting with my kids, and volunteering at their school. I need to throw myself into the work I love, and remember why I love science. I need to be my husband’s dinner partner again, instead of the woman he has to bring things to because she’s too weak to get out of the damn bed.

And to do that, I need to leave this cancer identity here, at the hospital, today.

And I need your help. In my toddler planet email box are nearly 700 emails. Some are brimming with excitement, full of ideas for projects that people want me to help them with, to be the face of cancer patients, to advocate, to raise money, and I need to say no. Some are ideas that I started, like blogging my clinical trial experience for ACS or the lymphedema sleeve connection that I made and asked you to help me publicize, but that then got out of control. Some are people wanting to do things for me, to send me things, to take my picture, to tell me about Cleaning for a Reason that will clean my house, to help. To help. Some people just want to visit the sick, and we are told explicitly to do that in the Bible and in faith traditions, and it’s lovely and wonderful and generous and

I can’t take it.

I don’t know how to say no to kindness, but I need to learn.

Because I need to get out of bed, push myself a little more each day, and find those other parts of ME again, to make this life that I’m fighting so hard for really be worth it again.

I’m taking extraordinary measures to live.

It needs to be MY life again. Not that of a cancer patient, living with either a fear or an expectation of death.

To sum up (and I’m sorry to ramble), I asked my oncologist today to tell me, straight out, whether I was dying or not. She said not now, and that there are more chemotherapy drugs to try if the trial drugs don’t work. We need to try this. She wouldn’t do this if she felt it was time. And there is hope of getting better.

After all that, I had still had trouble understanding her words, given how I feel, so I asked her, in mom-terms: So, should I sign the kids up for swimming lessons or call hospice? She looked me straight in the eyes, put her hand on mine, and said

Swimming lessons. No question.

But first, friends, I have some work to do in that email box. I’ve had trouble finding the words, but I think I have them now: “No, thank you.”

If you get that email this week? I love you. I love that you were so thoughtful. I love that you care about me. But I can’t act like a patient anymore, unless I want to keep being one. And I don’t. I want to take my kids to swimming lessons!

Edited to add: My labs just came back. Neutropenic. (My white blood cell count is too low.). No treatment this week. No crowds. Lots and lots of washing of hands for me and everyone around me. Did this cause the weakness that made me so afraid that my body was shutting down? I dunno, but it surely didn’t help.

Happy. Nice. Curious.

February 9, 2011

I worry about my kids.  I worry a LOT about my kids.  How are they making it through this crazy time?  How do they deal with hearing my name listed among the sick that we pray for at church every Sunday?  How do they feel when they hear me say, “No, honey, Mama can’t” wrestle or swordfight or take them for a walk? 

Are they ok?

Are they going to be ok when they’re teenagers, or all grown up?  Will this time be a defining moment for them, something to point to in future therapy sessions?  Will they be ok?

But yesterday, my oldest brought home a drawing from school that made my heart sing.  They drew pictures of snow globes, and, out of anything in the world, he chose to draw himself playing with two friends.  He drew friends.

He didn’t draw the dark scary place that I was in.  He drew the happy, kid place that he was in.

And he’s going to be ok.

Today, he came home with simple homework:  write three words that describe who you are.  We waited to hear what words he’d choose, and, after his bath tonight, he told us:

Happy.  Nice.  and then he asked his Dad what word he’d use to describe him, curious what he would say.  Dad said, “curious.”  Widget smiled, and there the words were, all out in the open.  WhyMommy’s oldest boy had fulfilled her deepest hopes, all at the age of 6.  He is happy.  He is nice to others and his friends.  And he does ask “Why, Mommy?” just like I dreamed, well before he could talk.  They’re still the sweetest words, next to the last ones I hear every night, as I turn off his light and kiss his forehead as he goes to sleep:

“I love you too, Mommy.”

No Princess Fights Alone

January 26, 2011

The next morning, I turned on the computer and could hear you all cheering me on from the comments.

As I scrolled down, I could hear you, and you weren’t sad any more. You were cheering me on, and my little Lego warrior princess, and loving my sons’ insight and innocence.

No Princess Fights AloneAnd then, I clicked through, and I saw the little warrior princess looking out at me confidently from Amie’s blog. Leticia’s. Amy’s, and Jean’s, and C.Mom’s and Abby’s. Marty’s and Laurie’s and Robin’s and Stephanie’s. Kate’s. Amy’s. Mel’s, and the LFCA community. Jenny, fellow IBC survivor in New Zealand. Sue, Margaret, Sunday. Ella, Kathryn, Anne, Jennifer, Heather, Stacey, Jennifer, Annie. Bon. Heather, Joa, Aimee. Cyndi, Rebekah, and Gayle. Michelle, Nicole, Stephanie, and Ilnap and the list is growing still —

I am blessed. beyond blessed, in every dimension of my life. I have a loving family, a strong and supportive husband, the work of my dreams, and the most amazing friends, who won’t let me wallow alone. They aren’t writing me off. and so neither will I.

As I stared, unbelieving, at the screen on Saturday, my little boys came in and climbed onto my lap for a snuggle. Widget looked up and was surprised to see his little warrior princess looking back. He asked, “Why is the Lego girl on the computer, Mommy?” and I told him what you all were doing. Both boys got happier and happier as we clicked through to post after post, blog after blog, and the warrior princess stood strong on page after page.

As they laughed in delight, I couldn’t help but join in, and we giggled and laughed and we turned off the computer to go read stories together, as it was nearly time for bed.

We all slept well that night, knowing that we do not fight alone, but with an army of princesses – Lego and real-life – and their actions go beyond the badge.

For each badge posted, Amie/MammaLoves will donate $1 to Crickett’s Answer to help women in need afford lymphedema sleeves and gloves to keep their arms and hands from swelling after a mastectomy (or two). Leticia/Techsavvymama will donate $1/comment on her post. Joanne/Pumditmom will donate $1/comment on her post. Go, comment, and spread the word – there is help available for breast cancer survivors needing lymphedema sleeves… and let me know if you’ve done something to help pass along that information (just use the words “lymphedema sleeves” and include a link to Crickett’s Answer). There are boxes of class 1 sleeves already at Crickett’s Answer that need to find their way to survivors in need. Class 2 sleeves will be bought as needed.

And if you just want to feel good about humanity? Go over to Amie’s post and see the growing army of princesses.

Together we fight, as the drugs I take each morning fight and starve and cut off the cancer cells so that they can’t grow any more.

“Me happy.”

January 16, 2011

… and then, on the morning of his fourth birthday, before any of the presents, the cake, the party, and the friends, my littlest looked up at me in a quiet moment, gave me a snuggly hug, and said, “Me happy.”

And suddenly, all of it — the chemo, the pain, the lonliness, the aches, the despair, the struggling, the treatment, the side effects, all of it — was worth it.  Because my children, my very dear and sweet and kind but most of all MY children, the only ones I’m really responsible for when it comes right down to it, are happy.

They aren’t scarred.  They aren’t afraid.  When we spent some time playing in the hotel pool on Friday after my work concluded, they laughed and giggled and bounced up and down in the water in my arms or with the kickboard as we learned to swim (having missed those lessons I looked forward to taking them to so long ago, when I was first ill), and they we had so much fun together.  When they saw the kinesio tape holding my shoulder in place, they simply asked, 6 yo Widget asked, “Mama, is that tape from chemotherapy?” and I swooped him into my arms and said, “Nope, that tape is just to help my bones feel better.  It doesn’t hurt.  And Mama’s on a break from chemotherapy. Do you know why?”  He said, very earnestly, “Because you’re working this week?” And I was so glad he asked it out loud, because I could say again, “Nope, because Mama’s got a new medicine to take that will work even better and not make me so tired this Spring.”  And he said, “Good,” and we paddled to the other end of the pool.

We try not to talk about it so much, to not make their childhood soundtrack hushed whispers and talk of chemo, but we do talk about it matter-of-factly, like others would talk about things that are normal and everyday in their lives, and I think that’s how the kids are responding.  That it’s normal. And everyday.  And not to be feared, but to be dealt with. 

That’s our approach to resiliancy, and I hope it works.  It seems to be.

We just got back from church, where I hope and pray my kids will find solace and not anger when the day eventually comes that they’ll be there alone.  I want them so badly to understand how much the body of believers strengthens me, and how beautiful I find faith.  How much I love singing the old hymns, next to people I don’t even know sometimes, but who unite with me in our belief that there is a God, and that he hears us, and that he gives us peace.

Widget and I were admiring the stained glass windows quietly at one point (let’s pretend it was before Mass), and we agreed that they are beautiful.  Then I asked him in a whisper, “What is the most beautiful thing in this church?”  I heard an answer I did not expect from a six year old boy, but had planned to teach him as he grows.  He said, unprompted, taking his hand from his hair where he’d been twisting it, “The people.”

As it turns out, he already knows.  He knows that there is good in the world, and that beauty is found in the community of people who gather to praise, to lift up, and to help each other.  Whether that community is the stay-at-home Moms Club that we poured our hearts and lives into when the boys were babies, the Jewish community that we gathered together with for nursery school, the Catholic community that we have now joined and put our energies toward, the blogging community that you know I love and treasure and my family knows helps me as only words can say, the Blogalicious community that moved me almost to tears Friday night as we screened the new Blogalicious movie and cheered women speaking on screen or afterwards, our neighborhoods … community is community, whereever you find it, and, at the end of the day, the most beautiful thing is always the people.

Thank you for being my people, and for supporting me and each other as we go through difficult — and joyous — times.

Thank you, Lymphedivas!

January 3, 2011

The first of the year is a time for making new starts, and writing thank you notes from the holidays.  Today’s post is a thank you note to Lymphedivas, the company that makes lymphedema sleeves fashionable and fun.  Without their product, it would have been much harder for me to go out in public the last few years.

Dear Lymphedivas,

My name is Susan Niebur, and I’m a 37-year-old inflammatory breast cancer survivor with two young children.  After my double mastectomy in January 2007, my right arm began to swell and develop lymphedema.  I wore the recommended sleeve and glove everywhere, but I was often greeted with looks of dismay as friends and former associates asked me, “What on Earth happened to your arm?”  When I dutifully answered that I had had inflammatory breast cancer, had a mastectomy, and now wear these sleeves, yes, for the rest of my life, the questioners would react strongly, and conversation would be difficult.  I didn’t like going out to meet new people anymore, and I stuck close to friends when we did.

Then I found Lymphedivas.  Skeptical that something so thin and pretty could work as well as the heavy-duty knit glove I wore, I bought a single style – the black paisley sleeve and gauntlet.  From the very first night I wore it out with the girls, I’ve been greeted not with “Oh, no, what happened to you?” but with “Oooh, that’s so pretty!  I love it!” and smiles.  I’m now the happy owner of four different styles, and I love matching them to my outfit or accentuating a simple black or white tee with my beautiful sleeves. 

When I had a recurrence earlier this year, the first thing I did after agreeing to treatment was to call Lymphedivas and order matching sleeves for my left arm.   This time, I would go through treatment in style! 

L-R Amy Mascott of, Leticia Barr of, Susan Niebur of, and Jessica McFadden of, at BlogHer 2010

The picture above is of my blogging friends and me speaking at a panel at Blogher 2010.  I gave this talk – and a keynote, where I spoke out about breast cancer just like I do on my blog, Toddler Planet, – wearing the YSC sleeve and glove on my right and the bei chic sleeve and glove on my left.  And, just as always, I got gentle hugs and many, many compliments.  Thank you, Lymphedivas, for turning a needed medical sleeve into a fashion statement that helps me move beyond cancer and go out again, with confidence.


Susan Niebur

Social media?

November 24, 2010

A woman in Portland, Oregon, has shut herself off from society in an attempt to show whether online interaction is a satisfactory subsitute for in-person interaction.  Newspaper to New Media characterizes it as a sort of experiment, stating that she aims “to learn how technology walls people off even while connecting them.”  Her site itself explains it as not an experiment, but as a kind of performance art, and her living quarters, showcased on a city street, are a companion piece. 

If it’s art, I’m not the judge (the only significant art I own consists of a handpainted pig on the wall and my children’s crayon drawings covering my office door like wallpaper).

But as experiment, I have a few things to say about this.  It offends me not as a scientist (as a scientist, I love seeing nonscientists try changing the variables to see what happens – the basis of some of the greatest experiments), but it offends me as a cancer patient.  Unless handled carefully, work like this belittles the vast experience that people who live this every day have.  That people who suffer from depression, agoraphobia, isolation, disesase, or compromised immune systems live with every day. 

There are many people for whom social media is not just a fun distraction on the commute home or between meetings, but for whom social media is a lifeline. . . their only interaction with the outside world, and one that is vital to keeping their own sanity.

I ranted in a blog comment:

How privileged, do be able to do this as an experiment.  Why not just ask those of us who have to live this, or a form of this everyday?  I’ll give you a hint: many cancer patients in treatment, with compromised immune systems, are largely confined indoors when treatment season (4-6 months) conflicts with flu season. Many of us have found solace, and friendship, and a way to keep up with our lives through social media.  I know I have.

I have, and I’ve written about the way that blogging is my window to the world, both as a mother of very young children needing frequent naps (remember those? as many as five a day for the littlest ones?) and then as a woman in chemotherapy, with an immune system not strong enough to fight off flu season, as in 2007.  My immune system is strong as I fight cancer this time (I have the white blood cell counts to prove it!), but it does take me longer to shake off infections; I’ve been down for a week with the latest preschool virus.

Which makes the count nearly 3 weeks that one or the other of us has had a fever and such, precluding playdates and coffees, and Mommy’s too tired for any activity after noon, so it’s been pretty quiet around here.

Very quiet.

Is online interaction a satisfactory subsitute for in-person interaction?  No.  Hell, no.  But some days, it’s the best you’re gonna get, and for that, I am grateful.

Know someone who is isolated from the world because of a new baby, an ailing family member, or the simple ravages of old age?  You CAN help make it better for them, not by “like”ing something on Facebook or RT’ing it on twitter – but with a simple phone call.  Go ahead.  Use those minutes on your cell phone this month.  Call Grandma or that nice old lady from the church who smells like peppermints.  Ask that shy mom with two kids under 3 to coffee at the park — or ask if you can bring her a treat from Starbucks.  Spend your facebook time today on the phone instead, or dropping by a friend’s house (after calling!), talking and connecting with someone who may not have any other contact with the outside world.  Do your own experiment, and find out whether that makes you feel better than another round of Words With Friends or bringing someone an item for their Facebook Farm.  And come back and let me know.  Maybe I’m wrong in the post above.  Maybe this is a good social media experiment in the reverse — and maybe, just maybe, your particpation could make someone happy.

Happy Thanksgiving, my American friends, and Happy Day-That-We’re-Alive to all of the rest of you around the world.  This year, as I have every year since 2006, I give thanks for not the institution of social media, but the friends that it has brought me and allowed me to keep through the isolation of early motherhood and severe illness.  You are so important in my life, and in the lives of so very many others.