Blogalicious, baby!

October 21, 2011

I’ve been looking forward to Blogalicious, the annual conference celebrating the diversity of women in social media, for months. This weekend, it finally arrived, and my husband whisked me from radiation treatment to the conference across town, arriving just in time to plot and plan the next event with American Cancer Society representatives.

Friends @Teachmama Amy and @Techsavvymama Leticia met me at the door with a wheelchair, freshly borrowed so we could navigate the huge conference center in comfort. I gratefully accepted, fighting off nausea and dabbing on makeup, and we headed over to the meeting in style.

When it was our turn, shortly after @TedRubin tried to lead the conference attendees to lunch smiling and skipping, Angela, the American Cancer Society representative, talked about the more birthdays initiative and introduced me to “tell my story”. My (personal) goal was to celebrate the work and research that had brought us this far, to teach why more research is necessary, and to ask for more research on metastatic disease. This is what I said:

I am alive today because of research funded by organizations like the American Cancer Society and the federal government.

I was diagnosed with inflammatory breast cancer in June 2007. I had a year of chemotherapy, surgery, and radiation, all developed by really smart researchers funded through the efforts of men and women like you. The treatments worked, and I have *lived* for 4.5 years while my babies grew up and went to school. I am grateful, so grateful, for that.

But the cancer came back. Now, like 150,000 other women and men in America, I am living with metastatic disease. Metastatic breast cancer, as some of you know all too well, is when the cancer moves away from the breast and recurs in the lungs, the liver, and other vital organs.

Now, I’m going to let you in on a dirty little secret: No one dies of breast cancer confined to their breast. Some of us die from treatment, but most of us die when the cancer has moved to our vital organs and shut them down. We die of metastatic disease. There are treatments we can try, but there is no cure.

When I was diagnosed with metastatic breast cancer this year, I was reassured that there were 20 chemotherapy drugs that we could try. We tried one. It worked, for a while. Then it stopped working. Three of the 20 drugs are in short supply right now, so I can’t have those. There are sixteen drugs left.

I will be on chemotherapy once a week, for the rest of my life. That is, until we’re out of drugs that work. That is why I believe we need more research. All of us with metastatic disease — and the 30% of women whose breast cancer will spread and become metastatic — will die without more research.

Oh, and — Research on metastatic disease is woefully underfunded, at just 3% of all breast cancer research.

Fight with me.

As I fight for my life each day at radiation or each week at chemo, join me and the American Cancer Society as we fight for more birthdays.

… After I spoke, Angela shared her testimony and encouraged everyone to sign up at cancer.org for more information about what they can do in the fight against cancer. The lights were dimmed and the two hundred bloggers in attendance lit candles perched on mini cupcakes and sang “happy birthday” in honor of the people in our lives who have celebrated more birthdays, thanks to cancer research and the treatment it enables.

Rock on, ACS, and rock on bloggers with heart. I hope you help us share the message that there is still work to be done, and we need to do the research on metastatic disease if there is to be hope for a cure.


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.”


    Turning awareness to action

    January 12, 2010

    There are as many ways to fight cancer as there are types of cancer. You know that. You’ve already been touched by cancer, and your sharp, sharp memories are in many cases what moved over 35,000 of you to read, and 350 of you to comment on my last post. Your words are powerful. As I read the comments, I felt your pain, your frustration, and your triumph in overcoming the wounds left by this beast.

    You spoke up, and said YES, I felt this way too. You spoke out and said NO, I loved someone with cancer, and she would have thought this fun. You told us YES, BUT I checked myself for breast cancer.  Awesome. But there was one more comment that was left over and over again:

    What action do you propose? I would love to be action and not awareness oriented, but I don’t know how to do that aside from walks and fund-raising. (ShannonP)

    Walks and fundraising are fantastic, Shannon.  They’re a wonderful way to show support and raise money to fund tests, provide treatment, and find a cure.  But there were so many other ideas in the comments yesterday — actions that I need to remember too are important, and to do more often.

    I challenge everyone reading this today to try one or more of these ideas that readers left.  Comment today, telling us which idea appeals to you, and if you can, please come back and comment again, telling us what you did.

    1. Donate. It doesn’t have to be about breast cancer. Donate to your favorite cancer-fighting organization. I like the American Cancer Society and the Inflammatory Breast Cancer Research Foundation, because they work to raise awareness AND fund research to find what causes cancer.

    2. Educate. Take a moment and share what you’ve learned.  Call a friend and ask if she’s done her monthly self-exam.  Blog about cancer, and what action you’ll be taking to honor those who we have lost (Oh, Andrea, Lisa, Jenni, Katie, Ursell, and Sue… I miss you and I wish you were here to help).  Write a letter to the editor about the kind of cancer that moves you, and what you thought of the meme.  Post something on your FB page that does raise awareness.  You know your friends.  You know what that might be.

    3. Advocate.  If you’ve ever said, “Congress should do something!” you can convince them to do it.  Join the Cancer Action Network for up-to-date information on what bills are pending in the U.S., and how you can take action.

    4. Volunteer. Join the Avon Army of Women fighting breast cancer by participating in studies as simple as a questionnaire… and critical in determining the big questions, like who gets breast cancer, and what treatments should be standard.

    That’s it.  Donate. Educate. Advocate. Volunteer.  Pick one or all, and I’ll meet you back here to hear what you’ve done to fight cancer.

    Which one are you going to try?  Which one have you done lately?


    Speaking

    January 29, 2009

    It’s funny.  I do a lot of talking online about cancer and survivorship and what happened, and I give talks professionally all the time, but put them together and it’s a whole new level of scary.  You see, I started talking about cancer on my blog because I wasn’t good at talking about it in real life.  I didn’t call up my girlfriends and chat casually about chemo or mastectomy … or my fears.  I typed it here instead, telling all of you, but without the risk that face-to-face emotion entails.  It was the way I coped.

    But last night, at @kbaumler’s invitation, I spoke to a room of 100 Relay for Life runners, team captains, activists, survivors (a few), and caregivers (many, oh, so many) about my story.  About what it was like to have cancer.  About what it was like to survive cancer, to help kick off their Relay for Life 2009 season.

    I didn’t know what to talk about.  Kristina said, “tell your story.”  So I did.  The first draft came out kinda dark.  I think I brightened it up some with a subsequent draft but it was still not a happy story.  But how could cancer be a happy story?  Yes, yes, I’m thrilled to be alive again, but the end result of a year of struggle and pain and work is … that I’m at the starting line again.  I’m alive. … but so are all of you, y’know?  It’s hard to be grateful for — or happy about — cancer.

    But today I am grateful, for I was able to help three people yesterday.

    1. @alexcaseybaby, whose twitters about a friend having a preventative double mastectomy came just as I was doubting my words.

    2. A woman who came up after my talk last night and told me that she was grateful that I spoke the forbidden words — acknowledging that the fight against cancer does not end with the good news that the tumor is gone.

    3. Another mom, who happened to be sitting at my table last night with her two kids, as I sat there with my two kids, all of them eating fruit and snacks together, who left as I began my talk.  I worried then that I had offended — but as it turns out there was more to the story.  You see, she has cancer too.  She’s having surgery on Monday and has to tell her kids … today.  She needed to hear me talk, to see me standing there, to see that there is life beyond cancer.

    And talking to her afterwards, as I told @mommy4cocktails, who so graciously came out just to hear me and sit by my side (and for which I’m forever grateful!), was the reason that I’d been brought there.

    That made it all worthwhile.