Looking for help? (cancer)

January 13, 2012

I’m still fighting pneumonia and the associated fatigue, but I received the most beautiful scarf in the mail from the people at L. Erickson’s Good Wishes program, which sends a silk scarf or head wrap to anyone losing their hair as a result of illness or treatment.  I’m assuming they mean cancer only and not alopecia, but it couldn’t hurt to ask!  Thank you, Good Wishes!

I’ve updated a resource page at Mothers With Cancer accordingly — check there if you’re helping a cancer patient and looking for resources for cleaning, cooking, hats and scarves, lymphedema sleeves, wigs, makeup, and how to organize to help a friend with cancer.  I don’t know what I’d have done without my friends this year and in 2007 – consider yourselves hugged!

Mothers With Cancer: Help page


A hard Thanksgiving

November 26, 2011

I’m sorry, but it was very, very hard to be Thankful this Thanksgiving.  I am, of course, enormously grateful and thankful and blissed-out over the success that medicine has had in extending my life four and a half years after my cancer was discovered in June of 2007.  As I look back over the year, I know just how lucky I am, luckier than friends lost along the way, and as my children are now in school and settled in small desks next to their own friends, present and future, I am lucky, we are lucky, and grateful.

but the grateful this week is overwhelmed by the unceasing pain.  I have not left my bed or downstairs chair since the chemo last Thursday, and at least four days (Sat, Sun, Wed, Thurs) have been lost entirely to the constant burning pain of the knot in my spine, just at my waistband.  All week, I sit in my chair downstairs with family, desperate not to lose another day to bed.  We talk, we read together, my fingers play with my Kindle Fire as family members come in and out of the room, company changing as the lighting does, throughout the hours of the day.  The pain is so intense I can barely see my loving family through it.  As my children climb onto my lap for snuggles, they push the shoulder this way or slide on my leg that way, and the knot on my spine cries out in pain. I do not push them off.  I mask my gasps and shift the children just a little to one side or the other, burying my head in their hair and hoping that they don’t hear, and that their brother doesn’t see my pain as he looks up from his talk with Grandma across the room.

They do hear, of course, and they do know, and they do listen, and they are on guard this week, running to my side when they hear a gasp and burying their heads in my chest as I grunt to get up from the chair.  They need reassurance, and I give it to them wordlessly, the only thing I can give today, this week.  A hug.  A pat.  A snuggle, a smile.  With or without words, telling them always Mama loves you.

The guilt of not working on the big projects and finishing the things that need to be finished is everpresent. I can’t decide, my body can’t decide, whether to rest for now so that I can recover and be healthy to finish each project when I feel better or to push forward and finish it right now so that it gets done in my lifetime, and so I have kind of a mid-illness crisis when I do get control of the pain, however briefly, and I don’t know whether to spend my time working or resting

but I always know to spend my time with my children, reading, or talking, or playing Yahtzee, Connect 4, and matchbox cars.  This is right, no matter how good or bad I feel, and I push myself to have these good times this week for them, for me, for family.  I push myself past the pain and into the love, as long as I can, and when I can push no longer I rest, asking my pallative care physician to increase the medication.  He does, questioning no longer, adding more medicine Thanksgiving night, as if this were the normal thing to do on the evening of a happy, family-centered holiday.  More pain control.  More meds.  Will it work?  For how long?  I don’t know, but I hope that it will work, and as I sleep I relax a little, the knot loosening, and I smile.  It worked.  It worked on Friday, and for part of the day today, and each day was a quiet day well spent.

At the end of the holiday, I am still grateful for the years given to me after the diagnosis, and the opportunity to be my children’s mother, even on the hard days.  To do research and to enjoy my work.  To push for good and to support those doing good.  To come back to the church and to seek for ways to use my talents on the days that I can stand to stand.  To be there for friends and family and children, and to make each day count.

I am so tired now, though, and now, I must rest again.

A favor to a friend, Susan McCorkindale, and in gratitude for the clinical trials, care, and pallative care given to me – if you live in the D.C. area and are interested in national health care issues, from health care reform to navigating cancer care: what every patient needs to know, please consider attending the FREE symposium next week at Georgetown Lombardi Comprehensive Cancer Center: “Fighting a Smarter War Against Cancer: Linking Policy to the Patient.”  It’s a great lineup, and the speakers are top-notch, from Senators, to Law professors to pharmaceutical companies, researchers, doctors, nurses, and pallative care.  Check the schedule, and see if you can attend all or part of this amazing opportunity at Georgetown.


From awareness to action, from ribbons to research

October 28, 2011

It’s time, I think, to move from awareness to action, from ribbons to research, and to share what we’re learning with the rest of the world.  The #cancerrebels and pink protesters I’ve linked to in the past and new blogs I find every day are standing up for what we believe in, and I’d like to ask you to stand with us.

I’ve heard you asking why the research allocations are so off (30% of breast cancer cases progress to metastatic breast cancer, which only receives 3% of the research funds in the U.S.), and how we let it get this way.  No one knows for sure, of course, but I’m convinced that a big part of it is that it’s easy to overlook metastatic breast cancer survivors.

Even the name is a misnomer.  No one actually survives metastatic breast cancer.  Every single one of us with metastatic breast cancer will die of metastatic breast cancer, unless we’re hit by a car (or some other such accident) on the way to chemo (for example).  Many of us are not as active as we used to be; we suffer from pain, aches, nausea and fatigue, and we spend our “free time” at treatment or sleeping it off.  We prioritize our time with friends, but still we may retreat from social situations since we tire easily and unpredictably.  We spend our time with our families, squeezing out one more good memory, one more moment of happiness with our children, our spouse, our partner.  Many of us are additionally exhausted from treatment combined with work, by choice or by necessity, especially for the large number of us who must work to maintain access to our health insurance, a terrible twist for those without partners with health insurance or another solution.  Many are also caregivers for parents, teens, or very young children, and the time for advocacy slips through our fingers.

But most of all, the metastatic cancer movement has been stimeyed by the truth:  most patients diagnosed first with metastatic breast cancer die within 3 years, a number that has not changed in the last 20 years.  The 30% who have another cancer first that progresses to metastatic cancer may live longer (or shorter), but they are weary from the fight, and many have not felt welcome in the “pink” communities that shout HOPE from the rooftops.

Hope is lovely, of course, but in breast cancer circles, hope seems to mean hope for a cure (which is not likely to come for metastatic patients without more research) or hope that the cancer does not return — making the individual then a patient with metastatic breast cancer — this disease that has no cure and is always fatal.

It is hard to volunteer tirelessly for an organization that preaches HOPE that its members not become like you.

But today I want to introduce to you 1) the National Breast Cancer Coalition, the organization of organizations that helped teach the #cancerrebels these facts earlier this year, 2) Metastatic Breast Cancer Network, which is holding its FREE  annual meeting on “Empowerment through Education” TOMORROW in Baltimore (it may not be too late to attend!), and 3) METAvivors, a grass-roots group that has formed around the need for ACTION.  Now.

The METAvivors are a group of women from Annapolis working to create change, to increase not just awareness but research.  The group helps groups across the U.S. form their own local support groups for metastatic breast cancer survivors, spreads awareness of facts such as the ones I discussed above, and has recently formed their own nonprofit foundation to support a level of research commensurate with the number of patients that are diagnosed each year with metastatic breast cancer.  Starting in 2010, the METAvivors now fund promising metastatic research grants out of donations alone.  They are staffed by volunteers and support designation of donations for research — include that word on your check or with your donation and 100% of the funds received will be distributed to the competitively selected research grants.

On October 11, METAvivors.org announced their 30% for 30% campaign to ensure that research and support for metastatic breast cancer are commensurate with the prevalence of disease.  I’m eagerly awaiting new details, but this is an organization I can really get behind.


Type A Mom

July 7, 2011

… at almost the last minute, I booked my flight for Type A Mom and the Bloganthropy awards last weekend.  I wasn’t going to go to this blogging conference (now actually called Type A Parent and nicknamed #TypeACon on Twitter), since it was two flights away and my arm swells when I fly (due to my lymphedema – you can read about it on the tab above if you’re curious), but I was encouraged to go and I’m overall very glad that I did.

After I finished the panel at the Low Cost Planetary Missions 9 Conference, I had dinner with my husband and kids and headed to the airport.  Two short flights (well, ok, the second was anything BUT short! 2.5 hours gate-to-gate from Charlotte to Asheville!) later and I was on the ground in Asheville, walking out into the cool night air to find … nothing.

No taxis.

No buses.

Nothing.

I had connected with another blogger on the plane, thanks to Twitter and a long on-runway delay, and we quickly called a taxi to take us to the conference hotel.  Now you’d think this would be the boring part of the story, but then again, you’ve probably never been in an SUV taxi with black light, dance music, and a disco ball — but only two working seatbelts and curvy mountain roads.

Bygones.

I arrived at the conference and bunked in with roomies C.Mom and TechSavvyMama, only to oversleep justalittlebit the next morning, arriving in time to hear Patti Digh, an inspiring speaker whose life changed when her father found out he just had 37 days to live.  Her session was followed by several others, but the highlight of the day for me was table-hopping to hug the necks of friends far and near who I love but don’t get to see nearly often enough!  I had such a great time with TechSavvyMama Leticia, C.Mom Elena, TeachMama Amy, Jessica/Kikarose, Justice Fergie, BetterinBulk Lolli, Modern Mami Melanie, a new friend from the Marble Jar, and so many others.

There are pictures — somewhere.  I’ll pull them together if I can — I was unfortunately cameraless.  But this is one that I need to show you, because …

I won!

On Friday night, I was given the Bloganthropy Award, an award which “recognizes women bloggers who have made a difference by using social media effectively to support a good cause.”  I’d say we’ve done that here, right?  Thanks to all of you for all your work spreading the news about inflammatory breast cancer, the breast cancer that kills without a lump, about lymphedema and the new program that provides FREE lymphedema sleeves to breast cancer survivors who can’t afford them, and for joining — and writing about — the Avon/Love Army of Women — we have made a difference.

A real difference.

And last Friday night, we won an award.

Bloganthropy2011_acceptingawardI accepted it happily, hugging Katherine Stone from Postpartum Progress, presenter and 2010 winner, and Debbie Bookstaber, Bloganthropy Co-Founder.

There was a giant check, which they tried to FedEx me afterwards (I’m happy with the real, small, spendable one, thank you!).

There was laughter and cheering, and then, when I got to speak about my cause for a moment, there were tears.

Because I accepted this award not just for myself, but for all of your work too, and in honor of the 20-or-so writers at Mothers With Cancer, the blog that opens the curtains that hide cancer patients and their joys, their struggles, their fears, and their families, letting their light and their love and their lives shine through, even after we are gone.

This was a big moment for me.  Thanks for sharing it with me that Friday, Type A Mom, and for sharing it here with me today on the blog.

You have made a difference.


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!


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