Healthy enough to travel!

June 15, 2011

Last week I was in Oregon for my brother’s graduation.  I am SO PROUD of John for his work at Oregon Health and Science University School of Medicine and I am SO PROUD of his wife, Anna, for her work in architecture at the University of Oregon.  I wasn’t well enough to travel to their wedding last fall (but “attended” via ustream, thanks to my brother’s new brother-in-law!), but I put this on my calendar in January and have been working up to it all Spring.

I traveled.

I flew, with the kids and husband, to Oregon last week, and had amazing adventures.  We visited Monmouth Falls, the Oregon Museum of Science and Industry (on $2 day! with an amazing exhibit on the technology behind the Chronicles of Narnia films!), we went to graduation and had Dungeness crab for lunch afterwards.  We drove by Powell’s Books, and I ducked inside for a five-minute grab of children’s books (which was awesome!).  We took family pictures and giggled and laughed as the photographer tried to get all eight of us to smile (eyes open!) at the same time.

We sat and talked around their tumbled glass firepit, and the children played Bocci ball with John until we all were exhausted.

The next day, we went to the beach, where we played in the sand and walked on the rocks and built tiny dams in the tidepools until the waves washed them away.  My little ones scrambled up a terribly high rock while the three of us, my husband, brother, and I stood below.  My brother was there for safety, he a certified river rescue guide in addition to a brand-new doctor of medicine, and I of course was there as the inwardly nervous outwardly cheering mom.  They made it to the top, and pumped their fists in the air with achievement, and my heart sang for them and the experience.  They tried something hard, and they accomplished it.

And that is what it is all about some days.  Pushing each other to try something hard, and celebrating the accomplishments.  We’ve been working on this with little things at home, things like perfecting age-appropriate behavior that has sometimes suffered as we get nervous or sad or scared, and eliminating thumbsucking and armsucking and physical comforts that have helped my little boys cope through the years, trying to replace those things with more age-appropriate coping mechanisms, and helping them see themselves as strong.

They are strong, you know.  They are so strong, and I am so proud of these little ones for all they’ve done and all they’ve been through, and I’m learning not to coddle them so much, for they are strong, and they can do this.

We all can do this.

I believe in them, and I believe in John and Anna as they set off to make a new life in another state, and I am learning to believe in myself, that I can spend this time LIVING not dying and clutching magical moments out of nowhere, making them for the children of course, but also for my husband and me, for we matter too, and I know that sounds ridiculous, unless maybe you’re a mother too, who wants everything for her kids and sometimes, somehow forgets to still want it for herself.

At a little store on the coast in Florence, Oregon, I discovered the legend of the Japanese floats.  For many years, these glass balls, used to float fishing nets, would wash up along the Oregon coast and come to rest in the sand, a thing of unexpected beauty for early risers to find on their morning walk along the beach.  They are rarely found now, but a few years ago, a local glassmaker began to reproduce them, and volunteers would sneak out to the beaches and hide them among the grass, or the tidepools, or the rocks.  They added beauty to the world.

There were lupines everywhere, and that reminded me of the lovely children’s story (Miss Rumphius, by Barbara Cooney) about the lupine lady, who wanted to travel and see far away places, to come home and live by the sea, and to do something to make the world more beautiful.  I read this to the children a lot when they were toddlers, sometimes reading it “to do something to make the world better,” or “to do something to make a difference.”  I should get it out and read it again, to myself, the soothing words sweeping over the quiet room, reassuring me that we need not all do everything ourselves.  Not all of us will be the greatest physicists in the world; in fact, only one will be.  But all of us, even those the world labels “terminal” and difficult and who some would rather not see, all of us can still make a difference.

I travel next week to the Type A Parent conference as the guest of Bloganthropy, an organization that recognizes women bloggers using social media to support a good cause.  The cause is cancer action, and I’m being recognized for encouraging you to join the Army of Women.  I’m so grateful for the recognition, because it brings more attention to the Army of Women and to the LympheDIVA/Crickett’s Answer to Cancer partnership providing free lymphedema sleeves for those who need them, but I am equally grateful for the push that it gives me to push beyond my limitations and work a little harder.

Next week, I travel. Again.

I can’t wait to see what I learn there!

Changing the conversation

May 3, 2011

Deadline 2020After a weekend workshop with 800 energetic, amazing, committed women (including 8+ incredible bloggers and 30+ metastatic women fired up to fight for the END of breast cancer), I have new energy and new spirit and new FIGHT in me, both against this horrible disease in my own body and against its formation of tumors and spread in bodies (called metastasis) in general.  There are some exciting ventures afoot, and hundreds of fired-up women canvassing the Hill today, talking to their Senators, Representatives, and the Legislative Assistants (LAs) that make things happen on Capitol Hill. 

There is hope – but there is more than hope – there is now a DEADLINE and a plan for the END of breast cancer tumor formation and metastasis: January 1, 2020.  Ridiculous? Perhaps.  Daring? Definitely.  More details will be coming, interspersed here with my usual stories of motherhood and science and friendship, and I’ll be introducing you to some amazing women, my fellow #cancerrebel warriors who STAND UP and FIGHT BACK and will not be comforted by pretty colors or hope.  We need more than ribbons, my friends.  We need RESEARCH that will bring about BIG change, more than incremental changes and improvements in the drugs that poision us (but poision the cancer just a little bit faster).  I love my chemo, don’t get me wrong, but wouldn’t it be great if we could SUPPRESS the tumor cells into dormancy or make the surrounding tissue UNWELCOMING so that they would move on, and “leave the neighborhood” entirely?  There is promising research, and it is exciting.  I can tell you more about that in the coming weeks if you like, but today I want to echo four statements from the conference speakers (with citations), and I hope you can hear the urgency through your computer screen or smartphone:

1. More than 500,000 women still die of breast cancer each year.  “The five-year survival rate for women diagnosed with localized breast cancer is 88-93%; the five-year survival rate for women diagnosed with metastasized breast cancer is just 15%.”   Fran Visco, NBBC President (the NBBC Baseline Status Report states that the first statistic is 98%, citing Welch et al JAMA 283(22): 2975-2978).  We hear all the time about survival rates improving – but for those of us with metastasis, there is a long way to go.

2. “Over 30% of women initially diagnosed with earlier stages of breast cancer will develop metastasis” — and no one knows which ones. – Musa Mayer, survivor and advocate, citing O’Shaughenssy, Oncologist 10: 20-29, 2009.  If new research can prevent secondary metastasis, women with primary tumors can live longer and healthier.

3. “Age-adjusted cancer mortality has not changed significantly in the last 60 years: it has decreased just 5%, while heart disease decreased 65% in the time period 1950-2005,” – Sharon Begley, journalist.  We can do better.

4. “Only 5% of cancer research funds are spent on metastasis, yet it kills 90% of all cancer patients.” – Dr. Patricia Steeg, researcher, in Sleeman and Steeg, EurJCancer 46:1177, 2010; Science Daily 1 June 2010. 

Can we cure cancer? Gosh, I hope so.  Can we prevent tumors from forming and metastasis from spreading?  We must.

What can be done?  Steeg urges new “secondary metastasis prevention” clinical trials that could occur even if experimental therapies (successful in mice) did not shrink existing tumors (there are a number of studies that show no change in the primary tumor but BIG changes in metastases.  All cancers are not the same.).  Success would be defined as MORE TIME for patients with (for example) bone mets.  More time.  I want more time.  To find out more and to tell the NCI this work is important, please leave a comment at the NCI site (Steeg’s provocative question WS-90) too.  Thank you.

For more of the conversation, please follow these #cancerrebel bloggers and warriors: Elizabeth@ccchronicles, @pinkribbonblues, @kathikolb, @uneasypink@jodyms, @chemobabe@yscbuzz  – and learn more about #deadline2020.  If you’d like to hear more about the plan for Deadline 2020, new theories on metastasis, tidbits about cancer treatments 4000 years ago, what dormant tumor cells are, why Dr. Susan Love calls lifesaving surgery/radiation/chemo treatments slash/burn/poison, or how physicists are taking a new look at cancer cells, why, just ask and I’ll happily share with you what I learn.

Hot Mommas & Role Models

April 25, 2011

Oh, where to go with this title?  Don’t worry, I’ll stick to the game plan and show you this new bling from the George Washington University Hot Mommas Global Case Study Competition – Role models for women and girls.
Winner, Hot Mommas case study projectThe Hot Mommas Project was started by Kathy Korman Frey to increase the availability of business textbook case studies featuring women and girls, and it quickly expanded to an international phenomenon with contributors from countries all over the world and a regular blog encouraging women in their pursuit of success — however they may define it.  

My case isn’t about cancer or advocacy or blogging – directly – but it does talk about my life at work and the choice I faced when deciding whether to be a WOHM or a SAHM (who also works).  You can read my case or browse the free case study library if you wish.  My story tied for first in the Science, Technology, Engineering, and Math (STEM) category this year, and it may be featured in a future textbook, along with Q&A that I prepared and submitted for the case.

I love the idea of the Hot Mommas project, and how Kathy and her team have put it into action!  Congratulations to ALL the winnners!

Advocacy Workshop / Deadline 2020

April 18, 2011

If you live in or near D.C. and you write about, care about, or just plain hate cancer, there’s an incredible workshop coming up at the end of the month that you should know about.  The National Breast Cancer Coalition is holding its annual Advocacy Training and Lobby Day on the Hill April 30 – May 3, and cancer survivors, advocates, and friends are coming from all over to learn how to make our advocacy more effective.  While I was too sick to sign up earlier (and all over feverish and chills and achy and painy from the Zometa this weekend), I’m better now – in body and spirit – and I’m determined that BONE METS ARE NOT GOING TO STOP ME.

I will keep speaking out about life with cancer.  It’s what I do.  And so why not do it more effectively?

NBBC has set a deadline for the end of breast cancer: 1 January 2020.  I’m encouraged by their plan and I’m committed to working hard to bring that day about, for our friends and kids and kids’ friends alike.  Going to this conference will help me to use my words more effectively, both when calling my Senators and Representatives and when typing out the occasional opinion piece from home.  So today I took the leap of faith that I’ll be strong enough to attend the sessions and events in two weeks and registered today.

I’m most interested in this panel: “Changing the Conversation in the Media,” where participants will learn how to help reframe public discourse from “dressing it up in pink every October” to something of more practical use than a sea of pink.  Although now that I look at the rest of the agenda more carefully, I see that Geoff Livingston is speaking on the social media panel!  I should go!  The other panelists are Dr. Alan Rosenblatt and Dr. Gayle Sulik.  It’s funny to see social media experts listed without their twitter handles….