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.


Mouse Makes Words … and so does Widget!

March 10, 2009

Yesterday morning was full of ordinary things that somehow, in the words of a commenter yesterday, became extraordinary.

While Widget went to preschool, Little Bear and I trucked around town taking care of this and picking up that and depositing a long-awaited check for NASA work. (Whoo-hoo!) We remembered to have a good time together, holding hands, stopping to look in the sidewalk cracks, picking up a stone or two for examination along the way. He’s not a treasure collector yet, but he sure does like to stop and check things out, and then throw them. (A future in propulsion? Oh, I’m just being silly.) I am giving him space and time to investigate whatever he wants, though, from rocks to bugs to sticks … and he takes it, carrying around big sticks, just because he can, and endlessly, carefully, throwing pebbles into the creek. (He’s very methodical about this. Sorry for the detail if you’re not Grandma and Grandpa, but I want to remember this. He crouches by the side of the water, carefully picks up a pebble, turns to me to ask, “dis?” and when I say yes, it’s okay to throw that one, he turns back, studies the water for a second, and gleefully chucks it in, only to be removed later as we make and remove dams in our little creek, watching the flow of the water gently downstream, where it will eventually join the Potomac.)

But I get ahead of myself. That was in the afternoon, after a picnic lunch in the back yard.

The morning was errands together, and Little Bear held up remarkably well, sleeping through only a couple errands, which I did drive-through or carried him, sleeping, in with me (only once, and I know I shouldn’t, because of my back and lymphedema, but if I can’t carry my child once in a while, what am I doing all this treatment for?). Even carrying him was amazing to me. Maybe it’s the bright sunlight and warm weather, maybe it’s the thrill of going freely without winter coats (just a week ago it snowed!), but the day had an aura about it that just spoke to me somehow.

And at the last stop, where I was looking for a picture frame, we stopped and picked up a new book or two, and bubbles to blow in the breezy springtime. The book rack in the craft store was a surprise. I stopped to check out beginning readers for Widget, and Little Bear (who has literally hundreds of books at home, since we couldn’t use the library with my immune system compromised) crouched on the floor thumbing through one that he picked out. Hunched over, enthralled in the pages, he concentrated as I picked out a phonics reader and a math reader, standing there. When I knelt down to see what he had picked out — Poky Little Puppy, maybe? The Happy Dump Truck? — I saw what had caught his interest: Motorcycles. The little dude (to use Stimey‘s word) had picked out a Level 4 reader with chapters about motorcycles. The pictures had entranced him, and as he looked up at me, he stood up and handed me the book. I did try to entice him with The Happy Dump Truck, but he shook his head, put the motorcycle book under his left arm, and began walking. Smiling, we proceeded to the checkout and bought them both.

He looked at the motorcycle book all the way home.

After preschool, I told a blue-and-green painted Widget that we had bought him a new book to look at. Excited, he wanted to see it right away. I handed the phonics reader back to him and was beyond thrilled as he opened it up and read, one after another, word after word. Word, after word, people! He was unstoppable!

And then we tuned into the driveway, and, just lke that, the spell was broken.

On to lunch, creek play, a walk in the woods, and then a lovely afternoon at the park and dinner with friends, each bit adding, unbelievably, a little more joy to the day.

At the park, Widget ran around with a pack of 4 and 6 year olds, playing games, climbing, sliding, running, and jumping with the best of them. A mom and I briefly played tennis with her daughter, and the little boys ran the court. Little Bear stuck like glue to my side, holding my hand, saying, “Mama, come,” and “Mama, see.” I went. I saw. And when he got too tired, we put the kids in the car and went for dinner. He almost fell asleep at the table, the joy of being with friends almost too much for him, and by the time we got home … he was asleep.

Widget’s first “solo read” was called Mouse Makes Words. I haven’t gotten a chance to look at it closely yet (although Widget has), but I do highly recommend Go, Go, Go! by Roxie Munro for kids and The Help, by new writer Kathryn Stockett for moms. I review books and a such over at Review Planet.wordpress.com; these are the two best I’ve read so far this year.


Ten things

February 21, 2009

Ten things that made me happy today:

Hearing my children’s laughter;

Hearing the silence as they work to figure out how to attach the crane to the dump truck, or a piece of yarn to the helicopter, or whatever else is needed for today’s play;

Eating breakfast, lunch, and dinner with them, as I love to do;

Soothing Little Bear because he (accidentally) spilled his milk, because he gave up the sippy cup months ago;

Planting seeds, and checking on the hyacinth bulb that is growing roots(!) and green shoots already in our little vase;

Planting the seeds of inquiry in their little brains, asking them where the roots come from, and helping them figure it out;

Reading a new book to them at naptime (Magic Treehouse – book 11, I think);

Reading a new one for me (Annie’s Box) while they cuddle and fall asleep;

Hearing my boys negotiate over the Geotrax trains (both of them! talking!);

Hearing them say, “G’night, mom,” as they throw their big boy arms around my neck.

And a bonus one — my friend Jessica has told us “how to help” and take action in response to the news of baby Vivi’s loss, and baby Gwendolyn’s fight.  St. Jude’s Children’s Hospital.  I don’t know why I didn’t think about it before.  Did you know that St. Jude provides free care for every child with cancer in America?  They work with insurance companies and fund the rest through donations.  I was blown away by that.  I mean, I remember the TV ads about it, but I’m ashamed to admit I’d never made a donation to help.  Until now.  Thanks, Jessica, for the reminder.  I’m so proud to be your friend.


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.