December 8, 2010

Elizabeth.  Oh, Elizabeth. 

Just yesterday, we heard that Elizabeth Edwards had made the decision to stop chemo.  Just yesterday, we – my family – made the same decision to stop chemo.  To stop the treatment that may be saving my life because it was taking too much of a toll on my body.  For fifteen weeks, I’ve been faithfully taking a chemo pill designed to sweep my body clean of any stray cancer cells left after this spring’s surgery and this summer’s radiation treatments.  We had hoped to finish the treatment with three more weeks, but it was not to be.  I’m too tired.  I’m in too much pain.  My body isn’t getting a break, and it isn’t getting a chance to heal. 

Like Elizabeth, I have two young children.  Mine are 3 and 6, about the same age as hers were when she was first diagnosed, but mine are veterans of the cancer treatment dance after more than three years of treatment, remission, and recurrence.  My children come to the hospital with me for checkups and blood draws.  They wait patiently during physical therapy appointments, playing with matchbox cars as the scar tissue is ripped off my chest and I work to regain function in my arms.  They help me pull my lymphedema sleeves on in the morning, settle for quiet playdates instead of park and museum adventures, and have adjusted to quiet, easy pets like fish instead of boisterous puppies as we had planned.  They cuddle with me in the afternoons when I have no energy, and happily share their legos and playdoh when I do.  They are my constant companions, my joy, my loves, and my reasons for living.

And when the little one woke me in the dark of night worried about monsters outside his window, I held him and comforted him and sobbed and sobbed, as I thought about Elizabeth’s children – and my own – and how no child should ever have his mother taken from him because of cancer. 

Not hers.  Not mine.  Not the women that we’ve lost this year or the women we’ll lose next year. Cancer is a thief that separates mothers from children and tears our world apart, one mother, one child at a time.  The grief that we feel at losing Elizabeth Edwards, mother, daughter, advocate, and friend, is real, even if we never met her, because she has showed us the depth of a mother’s love for her children, a love that keeps them close and touches us with its strength – and yet, she was taken from them anyway.  If she couldn’t triumph over cancer, how can we? 

Susan Niebur writes at Toddler Planet and Mothers With Cancer, a group of twenty women writing their truth online.  To help find the cause and the cures, please join the Army of Women participating in research studies.  If you need help, please call the American Cancer Society at 1-800-227-2345.  No one has to face cancer alone.

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. 

IBC in Australia

November 20, 2010

A package came in the mail today from Australia.  It was filled with Cadbury chocolates with pictures of wallabys and kangaroos and wombats (I think) and an animal I swear I’ve never seen before but might fit in over at Jean’s house; a bag of Cherry Ripe chocolates (OMG, I’m so sharing these with TheDCMoms the next time we’re together — well, what’s left); vegemite (Kate! What do I do with this? toast?); a book for the kids (Diary of a Wombat! I’m going to read that to the kids right now!  Okay, I’m back.); a book for me by Caroline Roessler, the  editor of Notebook: magazine; and a 2011 calendar diary that is so relaxing and hopeful, useful for making plans.  Which I’m doing now, baby!

AND two copies of the October 2010 Notebook magazine, with a full-page article about IBC!  In my words!  The author, Donna Reeves, excerpted my blog posts to tell my story, and I really like the way it came out.  There was also a sidebar with symptoms of IBC (YAY!) and an additional reference to the story in a later blurb on Breast Cancer Awareness Month: “While most women know to do regular breast checks, there is a particularly aggressive form of breast cancer that does not present as a lump, called inflammatory breast cancer.  It affects around one to two percent of women diagnosed with breast cancer each year.  See page 76 for more.”

The one to two percent reminds me why we still struggle to get the word out, particularly in countries with fewer overall cases of breast cancer (in number, not necessarily percentage).  Since 13,000 Australians are diagnosed with breast cancer this year, only a couple hundred will have IBC.  How difficult must it be to ensure that all the GP’s are aware of such a fast-moving and terrible — yet rare — disease when only a hundred or two people nationwide are diagnosed?

Although Notebook: magazine has since folded, I’m so happy for our story to have been featured with a list of symptoms and encouragement for breast self-exams.  Thank you, Donna, for contacting me and making this happen.

A terrible day

September 2, 2010

There’s no denying that yesterday was a terrible day in my real, and my social media, neighborhood. First, we’re all safe. My family is safe, my friends and their families are safe, and in fact everyone involved in yesterday’s terrible events, with the lone exception of the gunman, is safe and home again. 

But it was a terrible day, even for those of us miles away from the epicenter of the situation.  The news unfolded on twitter, fast and furious, with real news and commentary and expressions of concern all mixed together with check-ins from and check-ins looking for people we know and love, using the fastest method of delivery that we know today — our own party line — twitter.

I was impressed from afar with how most people handled it, and this post is to APPLAUD those who handled it like adults, and to say THANK YOU to everyone who was so decent and wonderful and kind and gathered together to support those who were worried about family, about friends, about the children in the day care center.

While yesterday was a wakeup call, reminding us that terror can also be homegrown and live in our own towns, it also reminded me of the power of friendship and love.