… to make you feel better, Mommy

This week was the first I’ve had alone with my second child, my babykins, 4.5 year old Little Bear, since his brother went off to nursery school three years ago and left us aimless, wondering what to do with ourselves during the day.  It was only three hours back then, but what long hours, sitting on the stoop, waiting for brother to come home, trying halfheartedly to entertain ourselves until we got into the groove of pre-preschooler play again.

But this week was different.  This week, when Widget went to school and LB waited for his to start, was snuggles and playdoh and friends popping by for a playdate and me pushing myself to drive to an adjacent neighborhood so that we could have a playdate with LB’s first friend that he made all. by. himself at nursery school two years ago, on HIS first day, and that we’ve had playdates with nearly every Monday since.  She invited us over, and she’s not really aware of this cancer thing, and I want their friendship to continue. . . so I drove us over there, and I sat on her couch instead of mine, and we had preschooler snacks and juice and milk and it was a lovely couple of hours.

I wouldn’t have not done it for the world, for him, for them, for us.  He deserves his own friends, in addition to the kids of Mama’s friends, or the younger siblings of brother’s friends, and I’m so proud of him for making and trying to keep them.  So I pushed myself to drive, and to sit, and to drive home, tired.  He and I came home exhausted, and we slept all afternoon.  He woke four hours later and was upset that “me never go’ed to sleep!” But he had, of course.  We had, and a dear friend stepped in to watch my older child so we could keep sleeping, and it was peaceful as we woke up that afternoon.

Sleep has played a big role in our lives this week, as I skipped chemo (it’s my week off), but felt the pressure of the treatment, the forced sleep, the weakness that makes getting up unimaginable, and all of that regardless on Wednesday, Thursday, and Friday.  I didn’t know how to explain it, and I raged inside, angry that I couldn’t even feel great on my week off.  And then I realized that it was the effects of last week’s chemo, making themselves known as they peaked 5-7 days after treatment.  Right on schedule.  Whoops.

So apparently the fantastic weekends I’ve been having, paired with the unexpected slowdowns on Wednesday before treatment, are right on for this chemo, although they are backwards from what you’d expect, and from what I expected, from previous treatments.  I’m still getting used to this new normal, and really it has felt anything but.

…

Moments to remember:

On Wednesday, I was so very tired that when Little Bear brought me a stuffed elephant and asked me to play with him, I agreed, suggesting we play with the elephant in the blankets in Mama’s room.  Despite not having done much yet that day, I was exhausted, and went to lie down in bed.  Bear brought me stuffed animal after stuffed animal, piling them on top of me and tucking them in around me as we played.  The soft lamb, the cow and his daddy, the horse and his mommy, all had adventures with us as I rested my body and talked softly with my little boy.  It was a beautiful moment, and when I fell asleep, surrounded by the stuffed animals he loves, he climbed quietly down from the bed and found his Daddy downstairs.

Thursday, I fell asleep even earlier, at 11:30 after a visit from a friend and her child, and Little Bear fell asleep with me as we read a chapter from Pippi Longstocking.  We slept again all afternoon, and Daddy took Little Bear to pick up brother at school without even waking me.  When they returned, I was rested enough to pull out the milk and cookies, and hear all about Widget’s day at school.  (It was only a “5,” but that may have been because he asked me what the average was, and that’s what I said.)

Later that night, I was in pain as I put the children to bed.  I tried to keep it to myself, but as I turned on my side, I let out a quick cry as the nerves by my spine pinched.  Bear crawled down from his bed, and I started to correct him for getting out when he should be staying in, but he turned around and gave me the biggest bear hug, saying, “I want to make you feel better, Mommy.”

Another time this week, as I lay in bed, waiting for the morphine to take effect to relieve the breakthrough pain, Bear and I played with toy cars.  He stopped, looked up at the afternoon light, and said, “Mommy, we are so lucky.”  What?  I had just been silently berating myself at the lack of educational plan for the day, and how crappy a mom I was to parent horizontally again, as J used to say — and at the exact same time he was thinking he was lucky.  In this case, he said, it was because we have so many toys.  But I heard what he meant loud and clear, and I resolved to cut myself a little more slack for not running races with them outside, or taking them out to great adventures, or even going with my three guys to the grocery store.  I’m using my energy for them.  I’m reserving my energy for what’s important – for my writing, yes.  For my friends, yes.  But most importantly, for my children and family, and I am getting pretty good at making every minute count.

And more than anything else, they know, oh, they know, how I love them.

…

In light of the new Facebook game this week, I’ve been asked several times for the post I wrote decrying status updates as a form of activism, and teasing about bra color instead of real action fighting cancers of all kinds.  Here’s the link.  Thank you.   In the name of awareness….

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IBC in Australia

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.

October

The world seems to come alive in October, as the wind begins to blow, gently at first, teasing the leaves who haven’t heard that it’s time to change. Then, all at once, as if the dogs’ evening howl spreads the message across the miles, the green begins to fade and the trees begin their dance with colors. First the maples tinge with orange, then the pears gather yellow about their branches. Finally the young exotic dons its coat of firey red, and our morning drive to school becomes a chorus of “ooh”s and “aah”s as we compete to find the prettiest, the most breathtaking, tree of the day. My children and I delight in seeing the colors take hold, competing in their brillance, creating a Fall mosaic more beautiful than the finest earthly artists, and one that each tree could never create on its own.

When I was a child, I never knew this cacophany of color. I grew up in Mississippi in the 1970s, a time and a place where just as the trees never changed (except green to brown, while we were sleeping), the people were slow to change as well. I remember — and this is only my memory, I don’t speak for others — I remember things being so concrete then. There were things that were Right. And things that were Wrong. And we were taught to know the difference. Everything was so clear-cut back then. We knew what was expected of us, and we either obeyed or rebelled, as fit with our own black-and-white, right-or-wrong, something-we-do-or-something-we-would-never-do moral code. Even the trees knew their place. They all obeyed the rule of nature and dutifully kept their demure green coats on until the exact day that they were told to turn brown and drop their leaves. Were there shades of brown? Not that I saw. There were no shades of grey in my youth that I remember. The trees were green, and then they were brown, and then they were bare, if they were so careless as to not be born a pine tree, with her evergreen gown around her.

I remember clearly — so clearly — my mother collecting the most vivid leaves she could find each Fall and taping them to the kitchen windows, bringing us a little of the magic she remembered from her youth and teaching us that there was more to see than green and brown in the world. It was something she did every year, and we “ooh”ed and “aah”ed along with her. Although I’m not sure my little brother and I ever could really see the magic that she saw in them, we tried. I remember trying. Daddy would lift us up to the window as very little children, and we gazed and squinted and tried to see the beauty that she did in the tinges of color that peeked out among the brown.

It wasn’t until I went away to college, far in the north (and by that, I mean Southern Virginia), that I truly saw what she had been trying to teach us. There was more to the world than the choices of Green or Brown. There were colors I had never imagined, as the oranges and yellows and reds danced with the green and brown, every color in the rainbow (except blue and purple. My children would like to know why not blue.) dancing in the trees, fluttering in the leaves as they pirouetted to earth in ways that crinkly brown Southern leaves never did. I fell in love with the trees, and the “north” where differing opinions could co-exist among good people, and I exulted in it, spreading my wings on Sunday drives in an old red convertible with my yankee friends, until the last rivulets of yellow danced in the Shenendoahs, and we put on jackets against the chill, preparing for snow in the valley.

Perhaps it was my strict Southern upbringing, perhaps it is an inborn cry for justice (I feel it, and I see in my young sons, who protest when classmates don’t follow the rules, for the sake of the rules themselves, and who fall apart when their routine is disrupted by a half-day or an impending field trip), but I rarely see shades of grey in the world. I see Right and Wrong and Injustice and OMG What Has To Be Done NOW. I end up SPEAKING UP rather than coexisting, and I know that doesn’t make me an easy friend. But it’s who I am and what I do. What I want to say here, and I don’t really know how, is that I APPRECIATE the efforts of all the people and organizations in the world bringing attention to a color that has already gotten a lot of attention this month: pink. There are shades of goodness in pink and shades that worry me. I realize now that they can co-exist, and that we can appreciate and enjoy all the shades of pink without declaring them ALL GOOD or all worthless, and that each shade of pink makes a contribution to the Fall mosaic around us that is bringing awareness and action to breast cancers, and is fighting the good fight in the way that feels right to them.

Today, I thank all the people and all the organizations formed across the globe that support the fight against breast cancer, that raise awareness, that raise funds for research, and that raise the spirits of those who struggle with this disease, in their own bodies or in that of the friends and family who they love. NEVER DOUBT that what you do makes a difference. Indeed, it is the only thing that ever has. And without the research and attention paid since the 1970’s War on Cancer, I would not even be alive right now, able to talk about the Fall colors outside my window, and the Fall colors of pink that are blanketing our new world.

Thank you for that. I heartily support the rainbow of efforts being made on my behalf and all of us who suffer from the breast cancers, as well as those pathfinders who have gone before. Here is (I hope) my last October post on pink, with links to my favorite organizations making a difference through their words, their campaigns, their dollars. Thank you, and please talk about your favorites in the comments if you’d like.

The American Cancer Society supports research and awareness on all the cancers – even the rare ones. Donate directly or go check out their newest campaigns: Choose You tips for healthy living, and online e-greetings for someone you know celebrating More Birthdays. Oh, and I did check out their NFL partnership and talked to ACS leadership: all of the pink you see at the games is being auctioned off by the NFL, with 100% of the proceeds going to ACS.

The Inflammatory Breast Cancer Research Foundation conducts research and spreads awareness of the cancer that has attacked me twice. They do no fundraising campaigns and have no pink partnerships (and therefore use 100% of donations for the mission and goals of the foundation, including education and research about this rare and deadly cancer). I have personally confirmed with the executive director, an IBC survivor and advocate — All checks marked “research” will be used DIRECTLY for research grants to find a cause — and a cure — for this terribly fast moving disease trying to kill me and my friends.  (Disclosure: this is where I’m donating this year, as a selfish investment in my own future and in memory of those we’ve lost.)  This group gives me hope.  Real hope that medical researchers will find a real cure, and that I will live to rock on the porch with my husband watching the changing leaves of Fall when we are old together. 

Living Beyond Breast Cancer is an incredible support organization that has monthly teleconferences, annual meetings in Philadelphia, and a wealth of web and printed resources available for breast cancer survivors, family, and friends. They’re good people, and their Charity Navigator rating is four stars, with 82% of their income spent directly on programming. Donate directly or participate in one of their pink promotions if that appeals to you – just choose a product that donates a substantial proportion of the proceeds (“10% of the purchase price,” “50% of the proceeds,” or a dollar figure that works for you – there are partnerships with White House/Black Market, Chico’s, and Rubbermaid).

Other pink shopping: don’t be afraid, just check the label and ask yourself a couple of simple questions like I do:  How much of what I’m spending on this goes to charity?  Is it a charity I recognize? Do the contents of this product contribute to cancer (check out these pages on Eli Lilly and Estee Lauder for examples)? And last — am I buying this product just because it has a pink ribbon on it — and if so, wouldn’t it be better to just send a check directly?  If the answer to the last question is yes, put it down, my friends, and send a check for that amount when you get home to the charity of your choice.  Please.

October is much more than breast cancer awareness month.  While I’ve written a lot about breast cancer this year, I’d also like to give a shout-out to my friends in the babyloss community and the domestic violence awareness community who are also celebrating (if celebrating can even be used in this context) awareness months, as well as those whose cancers get significantly less attention.  Let’s all keep using our words and our dollars to make a difference in the world, and remember Margaret Mead’s quote: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

The facebook purse game

I wrote a letter to Salon today. 

I was going to run it here, with expanded explanation and links, but I’m sick from the chemo tonight and need to lie down again before I vomit.  So here it is, along with suggested links for awareness, action, and where to donate.