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.


October

October 22, 2010

Leaf, from art4linux.org

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.”


    More birthdays, please!

    October 13, 2009

    As the health care bill makes its way through the Senate Finance Committee, and pink washes over the countryside, the American Cancer Society is campaigning for more birthdays.  That’s right.  More birthdays.  Where in the past perhaps women have unofficially “stopped” having birthdays at 39, the ACS wants everyone to have more birthdays.

    And you know what?  I do too.   I desperately want more birthdays.  I want to turn 39, and 40, and all the lovely numbers that come after that.  I want to blow out the candles with my kids, and see my littlest one turn 3, and 4, and become the big kid that he thinks he already is.  I want to take my big kid to school, and teach both kids to drive, and be there when they get all gussied up for prom, or whatever the digital equivalent will be in 2025 (yikes!).

    I’m taking steps to make that happen.  And I’m telling you all about it every step of the way.  I also talk a lot about mothers with cancer that I know from the other site, like Lyn, who just returned home from a double mastectomy and full hysterectomy … just a week after she finished chemo!  Or our Aussie friend Jenni Ballentyne, who is living full-time at hospice now, seeing her son Jack on the weekend, who has fought the good fight, but whose time is near.  Or Katie Homen, who we recently lost.  But today I have someone else to talk about.

    Sherry K.  Miss Sherry, as my kids call her, as their faces light up with smiles.  Miss Sherry was my son’s preschool teacher last year.  Soft-spoken, kind, but determined, Miss Sherry always saw the best in the kids, and helped bring it out in them.  The class of 3’s was close-knit, gentle with each other, and friends with all.  In the early morning, both boys and girls sat quietly and did puzzles at the table.  At 10, both girls and boys ran around on the playground.  At noon pickup, they were the well-behaved class that came down the hall quietly, but with smiles on their face.  Whether encouraging parents to leave notes of praise for good behavior the kids had done or telling us about the way our kids loved participating in the drama skits she planned, Miss Sherry was always gentle, and kind, and attentive, and all the things you’d hope your child’s preschool teacher would be.

    Miss Sherry helped me, too.  The first day I met her was only days after my oopherectomy, and I was so faint it was difficult for me to squeeze into the little chairs at the preschool-sized table.  I was self-conscious about my arm, with the sleeve and glove that marked me as “different.”  I didn’t want my kid to be seen as different, though.  I didn’t want people feeling sorry for him, or have him referred to as “the one whose mom has cancer.”  I didn’t want people to know.  But Miss Sherry knew.  And she pulled me aside and shared a little secret with me.

    Miss Sherry is a 21 year survivor of breast cancer.  And she is now doing wonderfully, and remembers it as a time long ago, not a driver of every day life.  Throughout the year, she kept tabs on me as well as my child, asking about me when I wasn’t the one to drop Widget off at school, complimenting me on my hair as it grew out, or when my color returned and I looked like I had more energy.  She was there when I had to go back to daily lymphedema therapy, again, and again, and sometimes Widget was late to school.  She is still there at the school this year, and we smile as we pass in the hall.  We know something that not everyone knows, you see.  We know how very precious this life is, and how I almost lost this opportunity to tell you so.

    Miss Sherry put a note in the preschool newsletter this week, reminding everyone to get their mammograms, do their self-exams, and remind “all the women in your life” to do the same.  It may seem like a little thing, to say what everyone says in October, but for a 21 year survivor to even want to think about this dastardly disease again, much less show such compassion and outreach, means a lot to me.

    And so I dedicate this post to Miss Sherry, and I wish for her, and for all of you, many, many more birthdays.

    Is there a survivor in your life that inspires you, makes you laugh, or touches your heart? Join the ACS more birthdays meme by posting about her or him on your own blog, or in the comments here, and grab yourself this badge.

    More birthdays. That sounds pretty good to me.


    A love note

    October 28, 2008

    Read this.

    And then, I have another question to ask you. It’s the one that comes after “Did you check your boobies this month?” and “Do you even know how beautiful you are?” but before “Do you have enough life insurance?

    Ready? Take a deep breath, girls, this is a big one.

    I’ll start with a little story.

    Last month, to celebrate my oopherectomy (I know!), my husband took us all back to the beach for a week. My mother-in-law and father-in-law came with us, and we spent a week together in the shelter of the house, watching storms rage on the beach and winds blow the waves higher than we’d ever seen. We ventured out when the weather let up, to dig on the beach, dip toes in the surf, and dash from little shop to little shop between the raindrops. It was incredibly relaxing and wonderful.

    My mother-in-law and I slipped off to a little shop at one point while the kids played and dad and grandpa watched them on the playground. We popped into the beach-wear shop and tried on sundresses. (Yes, in September. That’s just the way I roll.) I fell in love with a beautiful deep blue number with stars and swirls. I loved it — but I was hesitant for one reason. My chest. No, not the lack thereof — but in fact the radiation burn to the skin (where my breasts had been) was showing, peeking out of the neckline as if to say, “Hey, remember me? Ha, ha, I’m still here and it really hasn’t been that long since treatment!” Or something like that. It’s a nice deep tan, now, but still obvious.

    Or at least obvious to me.

    So I came out of the dressing room and asked my mother-in-law if it was obvious to her.

    And then I realized that I really didn’t care all that much who it was obvious to. I have a radiation burn. I don’t have boobs. I wear a funky arm wrap. That’s just the way things are. That’s just who I am and what I look like now. And I’m tired of covering it up. So there.

    I twirled in the dress, and I felt better.

    But the clerk heard us talking and came over to join in. (Slow day at the beach.) After reassuring me that she didn’t see anything, I told her why I was concerned, and told her that I’d had cancer. (To me, it was obvious. Silly me.)

    Turns out that she’d had a bad mammogram 2 years ago and never followed up. Never got the biopsy. Never saw an oncologist. She just didn’t follow up. And now she’s wondering about the pain in her breast, and worried about going to see someone.

    My jaw dropped to the floor. My mother-in-law and I both urged her to go see the doctor and get checked out, if just for reassurance, but I don’t think we were successful. I considered bargaining with her, kind of “I’ll buy this dress if you’ll go see the doctor,” but, in the end, I didn’t. Cause that’s rude. And cause I really wanted the dress.

    But you, my friends, are so important to me that I’m going to be rude and ask you what I regret not asking her:

    Are you putting off a doctor’s visit?

    If you are, can I encourage you to go? Please?