PINKWASHING JUST BECAME PERSONAL....AGAIN

This lovely lady, mother, grandmother and friend died this morning of metastatic breast cancer. Welcome to October. But I won't be writing a tribute. As much as that is deserved; others will be writing about her love, her cheerfulness through every hurdle and the deep mourning she leaves behind.

I am writing to YOU. About the irony of losing Diane Wright True as we begin the yearly October Pinkwashing. About the other friends I've lost to metastatic breast cancer. About how wrong we get the fight against this ugly disease. This disease isn't pink. This disease isn't sexy. This disease kills.

We KNOW this. We are AWARE already. We do not need education, we need a CURE. Or at least a control that works for life with a chronic disease.

So, yes. Through my tears, I am yelling, screaming, pleading.

Please do not buy one more pink spatula, pink bag of candy, pink socks or anything pink whose profit does not go directly, let me repeat directly - not through the hands of a for-profit company, to finding a cure. While I have no problem with companies contributing to research, they don't need your sale to do this...and many don't actually even contribute when you "buy pink". Don't drink the pink Kool-Aid.

Want to really help?
Want to really honor Diane? Or any other loved one lost? Or those fighting right now?

Contribute directly to those who make a difference and where your ENTIRE contribution goes to research. Here are two.

Metavivor "METAvivor appreciates your donation and honors your generosity by ensuring that 100% of your donation goes toward supporting grants for metastatic breast cancer research."

Stand Up To Cancer "Stand Up To Cancer is a groundbreaking initiative created to accelerate innovative cancer research that will get new therapies to patients quickly and save lives now. 100% of your donation received by SU2C will support Stand Up To Cancer’s collaborative cancer research programs."

So maybe you can tell. I'm heartbroken and angry. Racheal and Kaylee and Emily and Hayden deserved so much more time with Diane. Just like thousands of others we have lost; their mothers, grandmothers, sisters, daughters and granddaughters deserve a cure in any color and without having to "buy pink" for it.

STEPPING DOWN: THIS DECADE OF MINE

It began with Roy William, beloved brother to my Mother, dead at 20 of lymphosarcoma; the Uncle I never knew but heard about all my life. Grandpa, who sat me on his lap and entertained by putting olives on all ten fingers, was my first funeral at five years old, brain tumor. And Aunt Sylvia whose matter of fact sharing of her “different bra” and what that meant in an era of silence. Then Aunt Billie whose lungs were riddled with cancer and Grandma, whose pain from colon cancer lasted a terrifying three years. 

I grew up, life passed. Then the impact hit home again as body parts disappeared; my husband’s kidney in 1988, my sister’s entire lower jaw in 1992, my Mother’s breast in 1998. Fortune smiled, survivorship, unnamed but welcome, reigned in our lives. It would be after retiring from work life and encountering the LIVESTRONG Foundation before I truly began to understand “Cancer may leave your body, but it never leaves your life."

It is always dangerous to try to assess something that is not quite over. In 2004, wandering through retirement and wondering which on the list of my fifty great volunteer ideas I should choose, the LIVESTRONG Foundation gently intruded. So much for my list. But finding my passion more than made up for the unexpected detour. I became a LIVESTRONG volunteer; a LIVESTRONG Leader and then Senior Leader to be exact. Positions from which I am stepping down on March 31.

Now, after a decade of attending LIVESTRONG Summits, becoming a LIVESTRONG Leader and then a Senior Leader; participating in dozens and dozens of conferences, coalitions, committee meetings; reading and talking to anyone who cared about cancer; designing fliers and cards and notices and events, and always fundraising; here is what I know has been important. People.

For ten years the stories of cancer patients and their families have consumed my life. Many were LIVESTRONG Leaders themselves. Many were participants in what became our first and continuing local project, the Cancer Support Group. More than I can count are those who became Facebook friends because the cancer community tends to share stories, resources, triumphs and pain. And, most dear, are those who I met here in Lewiston because they had a need and I could help.

A cancer diagnosis when you live in a rural community often means fewer options for treatment; perhaps traveling many hundreds of miles for treatment; figuring out transportation when you can’t or shouldn’t drive, air travel is out of financial reach, friends and family can’t get away; arranging for long periods of time away from home, family and work for either local or distant treatment, recovery or travel; clinical trials too far away to be feasible; fewer support resources; fewer financial resources. In summary everything’s fewer, fewer, fewer and harder to access. The loneliness of a cancer diagnosis magnified.

It is their stories, successes and sometimes their loss, that will be with me forever. Each person, each story was unique like a quilting square. And like a quilting square, each story formed a piece of the larger pattern that became the encompassing base for my life. Each person, each story touched me in ways I never anticipated. And each motivated me to work harder and longer to see that their stories continued to matter.

My companion LIVESTRONG Leaders, hundreds scattered in all corners of the world, became a precious, treasured family. Both their stories and the stories they brought of others, became the oxygen in my air, the soil for my growth, the energy for my work.

While I'm not leaving the field, just changing where I fall in the lineup, now is a point of summing up. This decade of mine has meant the sadness and pain of loss, the joy of group support and caring, the shared determination of cancer fighters and the elation of each individual's personal triumph. This decade of mine has brought love and friendship unimaginable before my venture in LIVESTRONG. This decade of mine has meant stories in which I will find comfort and meaning as long as I live and love. May the next decade offer as much reward.

This blog is dedicated to Ty Wakefield and Courtney Clifford - the first two young adult cancer fighters I encountered on my LIVESTRONG path. Both were lost very young. Both had an impact that not only went far beyond their years, but continues to this day.

HOLIDAY HEART

For Dad, our Christmases held all the magic, the opportunity and the pleasure he missed as a child of the Depression. The tree was front and center, presents were many, stacked high; gifts of the heart and traditions like giant candy canes, Andes candies and Lifesaver Storybooks for each child, fudge for me, cherry cordials for Mom. He could make a million presents out of small nothings. And there was nothing he liked better than playing Santa on Christmas morning as we - one at a time - opened presents, ate cinnamon rolls and smelled the turkey cooking.

Although he has been gone now for fifteen years, Christmas is such a cherished time for me that in sixty-two years I have never missed being home for the holiday.

But I'm having trouble finding my holiday heart this Christmas.

A few short weeks ago an old acquaintance lost his miserably brief encounter with glioblastoma. And among our LiveStrong family, one has this month gone into hospice, one will be leaving us as I write, for one we have moved the Christmas gifts to this weekend and three are in that awful "suspect I am about to need hospice" place.

Elizabeth Edwards, Aretha Franklin, Ron Santo...this week alone.

My head knows I should grieve and then return to the fight with renewed determination. My head knows that allowing cancer to destroy even more of life than it already has gives it power it should not have. My head knows that honoring those who lived with cancer and are gone means living without quiting. My head knows that withdrawing from my life dishonors those who had no choice. My head knows that failure to use my rage and despair to change the course of this insidious disease is failing to dignify the long and painful journey of others.

My heart knows sorrow, grief, anger, bitterness and wrath - the violence of which pushes holiday spirits aside.

A still, small voice of reason reminds me that as the children glow with awe and anticipation, as quiet comfort is shared by family and friends, as the season's songs echo sweet refrains, as hope for a finer future arises; weariness will recede leaving room for the holiday spirit to once more inhabit my heart.

Maybe not yet, but surely.

In 2006, 2007 and 2008 my efforts to defeat cancer and support the wonderful work of the Lance Armstrong Foundation were focused on the Portland LiveStrong Challenge in which I rode my bicycle and raised funds.

As many of you know, I choose to skip the Challenge in 2009 in order to focus my work as a Local LiveStrong Leader on building a grassroots organization in the Lewiston-Clarkston Valley. Now an active and growing group - http://www.lewisclarklivestrong.org/ - I am once again turning my attention to fundraising via the LiveStrong Challenge. But this time for the grandaddy Challenge - Austin, Texas 2010, home base of the Lance Armstrong Foundation.

AND I NEED YOUR HELP TO REACH MY GOAL!

Consider this:
** 1.4 million Americans are expected to be diagnosed with cancer this year.
**Nearly 1 in 2 men and 1 in 3 women will develop cancer during their lifetime.
**By 2010 (that's NOW!) cancer is likely to replace heart disease as the leading cause of death in the United States. It's already the biggest killer of those under the age 85.

Please contribute to my LiveStrong Challenge Ride and help the Lance Armstrong Foundation continue to provide SurvivorCare, access to screening, educational materials, local grants and investment in research.

http://austin2010.livestrong.org/marciabanta

DEFINING LIVESTRONG

Last night I began reading a lovely small book, "Becoming Myself: Reflections on Growing Up Female" edited by Willa Shalit. Impressive and moving in the generousity of the women sharing stories, the very first story by Maya Angelou spoke directly to my passion fighting with and for people battling cancer; although cancer is nowhere mentioned. What she does include is a wonderful poem by Edna St. Vincent Millay. It is entitled "Conscientious Objector" but it envinces in me a perfect definition of LiveStrong.

I shall die, but

that is all I shall do for Death.

I hear him leading his horse out of the stall;

I hear the clatter on the barn-floor.

He is in haste; he has business in Cuba,

business in the Balkans, many calls to make this morning.

But I will not hold the bridle

while he cinches the girth.

And he may mount by himself:

I will not give him a leg up.

Though he flick my shoulders with his whip,

I will not tell him which way the fox ran.

With his hoof on my breast, I will not tell him where

the black boy hides in the swamp.

I shall die but that is all I shall do for Death;

I am not on his pay-roll.

I will not tell him the whereabouts of my friends

nor of my enemies either.

Though he promise me much,

I will not map him the route to any man's door.

Am I a spy in the land of the living,

that I should deliver men to Death?

Brother, the passwords and the plans of our city

are safe with me; never through me shall you be overcome.

COURAGE

On the front it reads "I'm Dying". On the back it reads "So Are You." And thus another warrior in the battle against some insidious disease announces their awareness that, for them, the end of the fight is near. A combination of spitting into the wind and remaining part of humanity by reminding others that each of us faces the same destiny.

Beyond the wry smile of acknowledgement, I am often struck by the audacity of the display...and all that goes with such self-knowledge.

Cancer has been a frequent intruder in my life. And seldom can a day pass without all of us seeing or hearing stories of those who battle some disease; stories that tug at our hearts or moisten our eyes.

But acknowledgment of the final reality, the loss of options, the sureness of outcome, the awareness of sooner rather than later; that is not a failure of hope, but a true and precious courage.

Benj had breast cancer. When the certainty of death was near, she spent every minute of time, every ounce of energy and every breath of determination to ensure her family was not only with her on the path but taken care of in the future. In public she was composed, thoughtful and organized. She had set a goal that required her to both acknowledge and act. Surely not easy, it was my first brush the exhibition of courage when seeing your death near.

Debbie's cancer was obscenely quick from diagnosis to death. From her hospital bed she completed a quilt for each of her sons, wrote letters and thoughts and fought to keep meaning in her life while facing death. Such acts required awesome strength of will.

Now, as I work with the LiveStrong cancer community, I am privileged to see and know others who defiantly acknowledge the nearness of death but continue to live. Who make painful, but necessary decisions. Who often even seek to provide comfort to the rest of us or guidance on the roads forward.

What else could you call that but courage?

ON THE ROAD AGAIN Part 2: Nevada

So, in this multi-part Death Valley trip report let's take care of day 2, 3 and 9 right now. These were our days driving through Nevada. I rather pride myself on finding any place I visit interesting; looking for the unique and noteworthy and seeing its value.

But...Nevada, sigh.

First, there is the landscape. You might remember from previous posts that I am a fan of trees. Real trees. Big flowing and majestic trees. Nevada has, well, sage. And while I find the Joshua trees a welcome relief from the endless flats and clearly unique, even their repetition does not a forest make.

The few distant mountains do not make up for the unceasingly straight road with its signs advertising 24 hour liquor, 24 hour casinos and 24 hour, ahem, ladies of the night 'ranches'.

With its nude landscape filled with military installations, munitions depots, undersea training(!) and flight zones it is easy to see how Nevada's big empty (but not really) spaces could lend itself to tales of alien landings.

Perhaps I could learn to admire if never truly like the landscape, but it is indoors where Nevada sends me running for cover. I didn't actually see this, but I'm pretty sure there are gaming machines in the restrooms because they are certainly in every other nook and cranny of any building that has an entry door.

But what really drops Nevada down to #50 on the "I love this state" list is the SMOKE! Not only is smoking allowed nearly everywhere, but mostly to get to any non-smoking area you must trudge through casino clang and swirling smoke to reach breathable air.

We met some lovely people and ate at least one very nice meal in Nevada, but my ability to see what Nevadans must, and I am sure do, love about their state is lost in a heavy cloud of smoke.

Moving On...Dr. Michael Rooney

Being retired with a new, challenging occupation myself I guess I should look on the retirement of Dr. Michael Rooney, oncologist extraordinaire, and his move to teaching others as a positive transformation. And if he brings his quiet passion to his new work, it will be all that and more.

But I will miss the doctor to whom patients felt such loyalty; the recipients of his warmth and caring treatment in the toughest of fights: cancer.

Yes, I too have heard horror stories of doctors who don't test because you are too young to have cancer, who don't test because you are too old to treat, who dismiss fears as unfounded therefore not worthy of response, who fail to understand either the misery or urgency brought on by a cancer diagnosis. And while believing each tale, I also believe most doctors do or want to provide the best care and in the most supportive manner.

Perhaps, as beloved as he was treating patients, Dr. Rooney will make an even larger mark on patient care by teaching others his calm, thoughtful and unhurried support for the stricken patient struggling to make sense of a diagnosis, to make treatment decisions and all the while wandering the emotional turf of shock, anger and fear.

CAPTAIN CURE

The enemy...cancer.

The battlefield...a young boy named Jack.

The hero...CAPTAIN CURE.

Captain Cure creator, Ty Wakefield, knows all about the enemy cancer. An osteosarcoma survivor who remains in treatment, Ty has drawn the enemy, the battlefield and the hero in comic book terms to help explain to children (and adults) what happens when cancer attacks your body or that of someone you love. From symptoms to treatment and side effects, Captain Cure and his partner MetRex engage in battle against evil cancer.

Chances are beyond good that each of you knows a cancer survivor. And chances are that you and others have questions this comic book can answer.

Check it out! http://www.captaincure.net/

PORTLAND LIVESTRONG CHALLENGE 2007 RIDE REPORT

Amazing. Inspiring. Awesome. Moving. How many superlatives can a person use to describe an event without sounding syrupy? But it’s true, the 2007 Portland LiveStrong Challenge is an event that profoundly inspires and is great fun at the same time.

Hopscotching right over the rather long and tedious drive to Portland, Saturday begins with packet pick-up and a visit to the LiveStrong Village. The first indication that this group cares about and supports each and every participant comes when you are handed the packet. Bells are rung and cheers go up as the entire room celebrates the efforts, and many times the cancer survivorship, of each rider, walker or runner.

In the LiveStrong Village are exhibitors of all types who support the fight against cancer. If a person hasn’t figured it out already, you begin to understand the breadth of the support and the depth of the commitment.

Saturday afternoon, Team IMAGINE has its first face-to-face meeting. With team members from Lewiston, Clarkston, Spokane, Provo and Hawaii their acquaintance with me and deep commitment to the battle against cancer are what they share. Now they get to meet and meld. Already they have made a huge effort in fundraising for the Challenge. Out of 181 teams we end in 12th place in total funds raised and are justifiably proud of the effort of a team with only nine members; the winning team has 229 members, is based in a metropolitan area and has corporate sponsorships. Team IMAGINE…Imagining a world without cancer.

Saturday evening is a pasta dinner for top fundraisers for which I and team member Diana Brown have qualified. At this smaller and more intimate gathering and with spouses in tow, we hear from Lance Armstrong and Alberto Salazar and listen to some of the amazing stories of the people participating in the Challenge; stories of courage and strength from survivors and family of survivors that often bring tears and always bring inspiration.

I am struck by being in a room full of people who are there because they have been touched by this awful disease and determined to fight. Each person in this room understood completely when Lance titled his book It’s Not About The Bike. And each person in the room knows the LiveStrong Challenge is not about the bike/run/walk either.

Sunday finally arrives. The rain starts about 5:00 AM and continues to pour down for the 7:00 AM starting ceremonies. But no one is complaining - for most of the people lined up at the start have faced or had friends and family face much tougher times that don’t end in a few wet hours.

We ride. Seventy miles. The rain does not stop. Team IMAGINE though, dressed for the weather, ALL make the 70 miles and cross the finish line through showers of yellow rose petals. And it turns out that we had fun riding, even in the rain. Go figure.

I ride because I want my grandchildren and their children to hear the word cancer and think only of some half forgotten disease from the olden days. Currently one in three men and one in two women will be diagnosed with cancer in their lifetime. Not acceptable.

And then, of course, there are the millions of current survivors. A person becomes a survivor the minute they are diagnosed. And for as long as they live, years or decades, they remain survivors. Right now there are more than ten million people living with cancer in the United States. And it is estimated that 1.3 million more will be diagnosed in this year alone. For each of them, the battle against cancer is about much more than a seventy mile bike ride.

Nobody engages in a project like this alone. Team IMAGINE is a very special and dedicated group. My heartfelt thanks to Diana, Michele, Peggy, Tammy, Karen, Vicky, Nikki and Crissy. The Crazy Ladies Cyclists, Twin Rivers Cyclists, friends and family (Especially my husband who cracks the whip when I get lazy and rescues me when I bite off more than I can chew!) have all been wonderfully supportive.

And to the many family, friends and all contributors…you’re the greatest!