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Bucket List

11/19/2014

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Photo credit: http://www.colintipping.com/wp-content/uploads/2014/10/bucket-list-pic.png
It invariably comes up ... what's on your bucket list? There seems to be an expectation that those who are living with a terminal illness (or simply, those who expect to die one day ... and that would be all of us!) have a check list of items they want to do/accomplish before they leave this world.

I ponder that idea sometimes and I've come to this conclusion. It really doesn't matter what I "accomplish" before I leave this earth. You know why? Because it's not about me. I'm going to be dead. Whatever trips I take, whatever meals I eat, whatever language I learn ... I'm going to be dead and none of those things are going to change that.

Enjoying my life isn't my goal. Finding joy in what I do is a goal. Loving others is a goal.

It's not so much about *what* I do, but rather, with *whom* am I experiencing life? It's not about what I'm checking off a list, but more about the memories being made for those who will grieve my passing. My bucket is wherever I am, with people I love, or even with people I don't even know.  To be frank, my bucket overfloweth!

In other words, it's not really my bucket list. It's yours. What's on your list of life that includes me in it? What memories will you have once I'm gone?

Let me know. Let's make your bucket list come true!




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Homecoming

11/18/2014

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Have you ever stopped to consider the differences between the “causes” of October and November? October has become known as Pinktober due to it being designated as “Breast Cancer Awareness Month" and because pink is the recognized color of breast cancer awareness.  There are pep rallies, relays, dinners, teas, parties, games, etc., all surrounding the idea of breast cancer awareness.  It’s pretty much a fun and games month, with people competing to see who can come up with the most unique (and generally, most offensive) method to attract interest to their particular approach to the cause.

Some of the ridiculous “fund raisers” for breast cancer awareness have included (but not limited to), balloons on dogs, decorating bras, boysinbras, take off your bra day, bra pong, motorboating, titty cams,tee shirts sporting all kinds of slang for breasts (boobs, boobies, second base, man’s real best friend, hooters, headlights, racks, melons, etc.), mamming photos, singing mammograms, and of course, the ubiquitous pink ribbon slapped on any product in order to generate sales … all in the name of doing something“good.”  (One website touts tons of support for breast cancer awareness by funding mammograms for women in need.  The fine print reveals that each purchase of a product (regardless of cost) funds 1% of a mammogram … which means 100 products must be sold before ONE mammogram is funded or 1000 products must be sold before TEN mammograms are funded. This is obviously not about helping women in need, but about  profit pockets.)

Pink cakes, pink cookies, pink cupcakes, pink chocolate, pink popcorn, pink candy corn, pink flowers, pink decorations, pink party favors, pink bracelets, pink cars, pink flags, pink everything surround breast cancer awareness. Everything is pretty and pink and well, just plain festive!  Pink is such a happy color and breast cancer awareness events are happy occasions.

Except for when you think of those who have died.  Each year, in the United States alone, 40,000 women (and men) die of breast cancer metastases, the only kind of breast cancer that kills.  Yet, very little of the party atmosphere of October focuses on that reality.

I want to put a big number in front of you.  I’m going to go back 40 years and assume 40,000 deaths due to breast cancer for each year.  That’s 1,600,000 people.  The real number is actually higher because we know the death rate was higher than 40,000 per year in the early days of tracking such things.  But, for the sake of simplicity, let’s keep it at this number.

Now … let’s move into November.  November is the month of Veterans Day and the time for us to turn our attention to our veterans.  We hold parades in their honor and we carry flags in their honor.  We cry on their behalf and we welcome their safe homecoming.  

With the exception of a soldier’s first return home, we don’t have big parties.  We don’t paint the town a certain color for them.  We don’t demean what they’ve gone through and play silly games in order to bring awareness to their plight and to their recovery from a traumatic experience.  We are very respectful of how we celebrate our veterans.  As one high ranking military officer told me, a soldier never forgets those who died.  The survivors of war always know what it meant to be alive and always know those who didn’t make it.  Their remembrances of their fallen comrades are poignant and courteous.

Breast cancer and the military have more in common than you would think. The yellow ribbon (inspired by the song, “Tie a Yellow Ribbon Around the Old Oak Tree”) first came into play after the Iranian hostage crisis of the late 1970s.  A wife of one of the hostages tied a yellow ribbon around a tree as a sign that she wanted her husband’s safe return.  She asked fellow Americans to do the same as an act of solidarity.  In addition to ribbons on trees, people began wearing the yellow ribbon on their clothing. The “ribbon awareness” was born.  

The yellow ribbon was used again in the first Gulf War in1991.  Yellow ribbons were everywhere,along with the “Support our troops”  and the yellow ribbon is now recognized as a symbol of support for our service people.   The AIDS movement of the 90s solidified the role of a ribbon as an awareness tool.  All it took was a well placed, simple looped ribbon on the lapels of a celebrity and people became aware.  http://thinkbeforeyoupink.org/?page_id=26

The pink ribbon followed a similar path in becoming the recognized symbol of a disease.  However,the pink ribbon morphed into something never dreamed of by the yellow ribbon or the red ribbon.   Due to cause marketing,the pink ribbon became more and more about parties and shopping than it did about bringing actual awareness to the fact that breast cancer kills.

How many American soldiers have died fighting wars since the founding of our nation?  1,309,000.  That number includes ALL wars and conflicts in American history.  http://www.militaryfactory.com/american_war_deaths.asp   That’s a huge number of men and women and every November, we stop and we honor them, as well as those who returned home, in a very deferential way.  The goal of Veterans Day remains “A celebration to honor America's veterans for their patriotism, love of country, and willingness to serve and sacrifice for the common good.”   http://www.va.gov/opa/vetsday/vetdayhistory.asp

Remember that big number I threw out earlier?  1,600,000 Americans have died in the last 40years alone due to breast cancer.  That number would be significantly higher if we go back to 1774 … 240 years.  Here are the two numbers, side-by-side:  1,309,000 dead in 240 years and 1,600,000 dead in 40 years.  More Americans have died due to breast cancer than Americans who have died fighting in wars.

While it is true that no one “signs up” for breast cancer,it is also true that the “battle” metaphor is the most common description used for someone with breast cancer (or any cancer, for that matter).  How many times have you read an obituary stating that someone has “lost their battle with cancer?”  One is encouraged to “fight.”  One is called a “warrior” or a “soldier”against the disease invading their body. Chemotherapy is described as a “search and destroy” mission and surgery is called “evacuation.”  Those who don’t die of the disease are known as “survivors.”  
Survivors of battle never forget those who didn’t make it.  It’s often difficult for a soldier to celebrate survival because so many did not survive.

What would happen if the breast cancer community was the same?  What would happen if the same level of appreciation and respect was shown for those who have died rather than having a month-long party celebrating that one has “survived?”  What would happen if all the silly games were set aside and just simple hard work went into generating funds for research?  What would happen if we stopped shopping for a cure and actually spent the money on research?

By the way, were you aware that November is the following?
  • National Alzheimer's Disease Awareness Month
  • American Diabetes Month
  • COPD Awareness Month
  • National Hospice Palliative Care Month
  • Lung Cancer Awareness Month
  • Pancreatic Cancer Awareness Month
  • National Stomach Cancer Awareness Month

Where are all the fun and game fundraisers for these deserving causes?  There’s the Movember campaign that addresses prostate and testicular cancer awareness,along with men’s health and there’s the Great American Smokeout on the third Thursday of November, but that’s about it. By the time October is over, people are most likely exhausted beyond measure to even consider other cancer causes.

Breast cancer should not be about fun and games.  There’s nothing fun about 40,000 people per year dying of this disease. There's nothing festive about 1,600,000 deaths in 40 years.   It’s a matter of life and death and the party atmosphere of October gives grave disservice to those have died and to those who are dying of this disease.

It’s time for a cure.

NOTE:  To make donations that will 100% go towards metastatic breast cancer research, please make your check out to UC Regents.Write "Rugo Breast Cancer Research in honor of ____________" on the memo line. Mail checks to:

UCSF
Attn: Hope Rugo, MD
1600 Divisidero St Box 1710
San Francisco, CA 94115

Alternative donation sites that directly fund research:  http://www.standup2cancer.org  and http://www.metavivor.org 

In memory of:  Franca, Michelle I., Catherine, Shirley, Michelle H.,  Carol, Kate, Mary Margaret,Sheila, Brigitte and Wanda. These women are all personal friends of mine who have died of metastatic breast cancer in the past year.  Also, in memory of Bill (metastatic prostate cancer) and Bryant (metastatic testicular cancer), both who died in this past year as well.

ADDED on November 9, 2015:  For a list of organizations involved in both breast cancer research and support, please see: 
http://www.iwantmorethanapinkribbon.com/effective-donations.html






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Wanda's Story, Part 3

11/17/2014

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My beloved friend, Wanda Dean Peel, passed away yesterday. I have so many words in my heart, trying to flow down to my fingertips to type them out, but my hands just freeze at the inadequacy I feel. I am so incredibly grateful that she is no longer in pain (This past month was a difficult one for her.), but I am so incredibly sad and broken that she is gone. Wanda and I have literally been together, talked on the phone, texted, or sent emails almost every single day for the past year-and-a-half. When she was diagnosed with extensive triple negative breast cancer metastases all throughout her body last December 31, I suspected that she wouldn't live out the year. I so wish I had been wrong.


A woman of faith, Wanda, aged 47, leaves behind a devastated husband of 21 years, a 16-year-old son, and a tribe of loyal friends from all over the country. Part of her legacy is her work at Queens Pumpkin Patch in Saratoga, California, where last year, she welcomed a group of visiting scholars from China who had never even heard of a pumpkin patch, much less had seen one. She helped share an American custom with that group and helped broaden their world view. While they never saw Wanda again, they remember her and her great heart.


I love Wanda and I will miss her tremendously. Wanda, I'll see you soon on the other side. As we talked about many times, God is still good, regardless of the pain we feel.

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More than quality and length

11/16/2014

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I don't know about you, but I want more than improving the length and quality of my life ... I want a cure.

"The lack of options for advanced breast cancer has created a sense of urgency for high-quality research and clinical trials to address a multitude of unanswered questions, a guideline panel concluded.

"Though treatment advances have extended the duration of survival, advanced breast cancer remains almost uniformly fatal. Consequently, the principal goals have been to improve the length and quality of life for patients.

{snip}

"In part, the lack of progress can be traced to the inherently slow pace of clinical development, said guideline co-chair Fatima Cardoso, MD, of the Champalimaud Cancer Center in Lisbon, Portugal. The traditional approach to clinical research has been to begin with patients who have metastatic breast cancer and then move the evaluation of promising therapies to earlier stages, effectively ending research in patients with advanced disease.

"In one sense, this is correct because we need to provide the highest number of patients as early as possible with the new drugs," Cardoso said in a statement. "But if we do that all the time, we will leave the metastatic patients without any good knowledge of how to treat them."

Entire article here: http://www.medpagetoday.com/HematologyOn…/BreastCancer/48627

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A Face of Breast Cancer ... Wanda's Story Continues ... 

11/14/2014

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Every October, the world lights up with a blaze of triumphant women flashing brilliant smiles, waving clouds of pink over their heads while shouting, "I'm a survivor!"  Indeed, each woman who is free of disease needs and deserves celebration at being in such a state of health.  I celebrate with them and rejoice at each clean scan my friends receive.

However, I think such jubilation is misplaced in October.  The month is named "National Breast Cancer Awareness" month, yet the awareness that breast cancer kills is swept under the pinked-out carpet.

When I last wrote about Wanda, she was hospitalized for pneumonia and low platelets.  She was released from the hospital and was home for three pain-filled weeks before being admitted again this week.  At this point, it appears her liver is failing, along with several other life-threatening issues.  While her breathing is labored, she is not in pain and she is sleeping a lot.  Her prognosis is grim as she is unable to withstand any other treatments to address the cancer ravaging her body.  Barring a miracle, Wanda's time on this side of eternity is coming to an end.

Wanda is a face of the ugly reality of breast cancer.  It's hard to celebrate recovery from such insidiousness when I see my beloved friend and her family.  Wanda is a real face of how breast cancer steals life.  It is so not fair and my heart is breaking.



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From the beginning

11/6/2014

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Another three weeks have passed, signaling the completion of another chemo cycle.  This cycle wasn't as easy as others as the day after my last dose, I came down with hand-foot syndrome, also called palmar-plantar erythrodysesthesia.  Hand-foot syndrome causes redness, swelling, and pain on the palms of the hands and/or the soles of the feet. Sometimes blisters appear.  While I've had mild hand-foot syndrome since starting this treatment in May, it became debilitating this time and drove me to tears at one point.  I couldn't sleep, I couldn't walk (my hands were mildly affected, but my feet were severely affected) and I became quite distressed.

My oncologist has revised my dosage and schedule and given me good pain management tips.  My feet are completely normal now and I'm walking comfortably again.  I do ask for prayer that I won't have such severe side effects this time.

My tumor markers remain normal.  I remain grateful.

I was going through some paperwork from my primary diagnosis in Hong Kong and discovered that my tumor markers were elevated from the very beginning.  Knowing what we know now about how this particular tumor marker works with the cancer in my body (we've been tracking this marker for 20 months now), I asked my oncologist if this meant I most likely had Stage IV breast cancer from the beginning.

She replied, "I've long thought you were Stage IV from the beginning and my records indicate that from the first time I saw you.  Considering the significant amount of disease in your spine so soon after your last chemotherapy (I started experiencing pain due to bone mets fourteen weeks after my last chemotherapy), it was clear that you did not have recurrence, but that you had cancer growth.  Apparently, none of the lesions were visible at the time of your primary diagnosis.  Seeing this elevated tumor marker at that time kind of "seals the deal."  I would say, with 100% confidence, that you have been Stage IV from the beginning."

I had suspected as much and have spent the last month or so wrapping my brain around the idea.  It doesn't change anything and even if this was known in January 2012, it's not likely that the treatment plan would have changed.  Perhaps I wouldn't have had surgery.  I don't know, and to be honest, I can't really spend any more brain cells thinking about it.  It is what it is.

However, what's kind of hard to consider is that the average prognosis for someone whose primary diagnosis is Stage IV is three years.  If I was Stage IV in January 2012, that means that I'm coming up on my three-year point.  Guess that means I'm going to be what's known as an "outlier" (an observation point that is distant from other observations).  There is a bit of mental wrangling in moving the clock back a year (I was operating on a January 2013 Stage IV diagnosis), but when you look at the entire picture, nothing has changed.  I have Stage IV breast cancer, no matter when it was first diagnosed. I didn't lose a year (as much as it seems that I have) ... I lived a year! 

I also asked my oncologist if my current state of health was the closest I was going to get to "no evidence of disease" (NED).  She said, "No.  I think you'll get even closer, if not completely NED.  You are responding very well and if this treatment doesn't put you into NED, there are others that could."

So all in all, an encouraging visit.  I will have my next full body scan in January.

My Facebook page "I want more than a pink ribbon" is going strong and I'm hoping to get a full website, independent of Facebook, going soon.  In the meantime, you can find it at:  https://www.facebook.com/iwantmorethanapinkribbon?ref=aymt_homepage_panel

I have finished writing out the book of Joshua and have moved on to Judges.  If anyone ever thinks the Bible is boring reading, I'd encourage them to read the history books of the Old Testament to counter that claim.  Cutting off thumbs and big toes?  It's in there.  Gee whiz.  Salvation saves us from ourselves and that's very reassuring to me.

Art and the children are doing well.  The first trimester of school has just ended and we are all pleased with the kids' results.  Rachel is still going strong with her cheerleading (Her squad will be cheering at the Raiders/Broncos game on Sunday, November 9, so keep your eyes peeled for her!) and Michael's soccer team remains undefeated.  They're heading to tournaments at the beginning of December.

Art attended his 40th high school reunion back in Michigan and had some good R&R time. 

As we head into Thanksgiving, I'm continually reminded to make gratitude a daily practice.  Not just a status statement, but a real reflection of the heart.

I am grateful beyond measure for each day that I wake up.  Each day is a miracle and I celebrate each day.

Thank you for celebrating with me.
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Death be not proud

11/3/2014

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Dead is dead.  I have no strong thoughts about Brittany Maynard's decision to end her life via lethal prescription drugs, but I do have an opinion on the term, "death with dignity."  I have a friend who is under hospice care and is on her deathbed due to breast cancer metastases to her brain and spinal fluid.  She is expected to die within days/weeks.  She is a mere shadow of herself and she is losing control of her body as cancerous cells take over healthy cells.  That's what the disease does ... it destroys.  My friend is being lovingly cared for by family and friends and she is as dignified as she was before cancer invaded her body.

At the end of the journey, both she and Brittany will have the same results.  They will both be dead.  In my belief, neither death is "better" and neither death is "dignified."  Neither death is controlled because both of them are due to an invasive, killer disease.  Both deaths are in women who in all "average expectations," shouldn't be gone at this point in their lives.

Should the debate really be on how we die?  Shouldn't the debate be on getting more research to understand, treat and CURE these diseases?    Shouldn't the focus be on that rather than debating people's decisions?

Dead is dead.  Death be not proud.
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November 02nd, 2014

11/2/2014

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Some of the best support anyone with any illness can have is friends who stand by you through thick and thin ... and go through the mud with you! A year ago today, I participated in my first mud run. Well, "run" is a misnomer. We walked. We laughed. We fell down and we got dirty. Because life is messy and life means getting into the trenches with those who are suffering. It's not standing on the sidelines. It's embracing the pain and the sorrow, as well as the joy and the laughter. It's not leaving anyone behind just because their reality is harsh. Two of us in this group are now Stage IV. We hope no one else joins us. Unfortunately, we have no crystal ball that can tell us the future, so in the meantime, we continue to get dirty and get cleaned up. Love God, love each other, love life, repeat. No Sister (or brother) Left Behind!
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Crickets

11/1/2014

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Every day (except Sundays) during the month of October, I have worn tee shirts with the #iwantmorethanapinkribbon logo on the front with challenges on the back. Each challenge statement ended with "I am Stage IV. Talk to me." 27 days of wearing these shirts. I've walked malls, gone to the gym, walked outdoors in public places, gone to high school football games, gone to soccer games, gone to grocery stores and gone to other places. California is warm enough that I didn't have to wear any jacket on most of the days. Out of the 27 days I wore those shirts (I'm not going to wear one tomorrow), how many people do you think talked to me about what was on the shirt?

** Crickets **

One person asked me about my shirt. She simply invited me to "tell me about your shirt" and we had a delightful conversation. She took some of my cards that have the research address on them to give to others.

I placed about 500 cards in various locations next to pink ribbon displays during the month. I was pleased when I went back to my local public library that they had placed the cards in a more prominent position than I had left them in!

I've been blocked by seven FB pages for pointing out that shopping does not fund a cure.

I have been ignored by four companies that I contacted via email for more information regarding their supposed donations for "breast cancer awareness."

One company that did respond to my emails pointed out that they have donated $1,000,000 over the past eight years to charitable causes. That equals $125,000 per year. What they don't say publicly is that their current sales page has 12 causes associated with purchases. $125,000 divided by 12 = $10,417 per cause. The general public isn't going to dig into sites as deeply, so the misleading assumption is that the $1,000,000 has gone directly into breast cancer "research and awareness."

I learned a lot this month and this site will continue. I hope to more fully develop the website (independent of FB) in upcoming weeks.



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I should be grateful?

11/1/2014

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“How could you NOT like the pink ribbon and what it stands for? After all, YOU have breast cancer! You really should be more grateful.”

Yes, I have received emails telling me that I should be grateful.

And on some level I am. My mother died of breast cancer metastases to the bones and lungs at age 52, back in 1989 when breast cancer wasn’t talked about much. I heard people ask her what she had done to “deserve” breast cancer. I heard well-meaning people tell her that she needed to confess the sin that caused the cancer. In short, I pretty much heard it all.

In the few years after her death, the pink ribbon became more and more well known. I purchased a ribbon pin with pink rhinestones (that I still have) and I cross stitched a pink ribbon and framed it and put it next to a picture of my mom.

After a couple of years, though, those items just didn’t “do anything for me.” My mother was so much more than the disease that took her life and I didn’t need pink ribbons for me to remember her. I didn’t need pink ribbons to talk to others about her.

A pink ribbon doesn’t memorialize my mother’s life. She loved to read … what better way for me to remember her than to read some of the books she enjoyed? My mother also loved trendy eyeglasses … what better way for me to remember her than to have some glasses similar to what she wore? She liked fashion jewelry, some of which I own and still wear upon occasion. In other words, I ditched the pink ribbon long before my own breast cancer diagnosis at age 48. I made my memories about my mother to be about HER.

When we moved overseas back in 2005, I finally donated the cross stitched ribbon to charity. I discovered the pin at the bottom of a jewelry box, where it still is to this day. I do understand that those early days of awareness are important in the history of breast cancer. While I have had people try to tell me what caused breast cancer in my life (Yes, I have had several people tell me what I did wrong to get breast cancer), it’s a different tone than it was 25 years ago. It’s a bit different now that I have Stage IV breast cancer … there’s a bit more of the “You must have done something wrong for the cancer to come back” mentality. This is an example of “awareness” without real education.

Breast cancer is out in the public eye. It’s no longer a hidden disease, nor is it considered to be one of “shameful origins.” There’s no going back to it being veiled in secrecy.

In fact, we’re so “aware” now, that almost everyone knows about breast cancer. Elementary school kids are wearing “awareness” bracelets and high school cheerleaders are waving pink pom poms. Society is very aware, but it’s time to move beyond that awareness. In the 25 years since my mother’s death, billions of dollars have been spent on awareness and research, yet we seem to be no closer to a cure than we were back then.

“In 1991, 119 women in the U.S. died of breast cancer every day. Today, that figure is 110 — a victory no one is bragging about. [That equals FOUR women every HOUR! However, there are those who say the death rate due to breast cancer has decreased significantly. I don’t see any significant drop.] Breast cancer remains the leading cancer killer among women ages 20 to 59; more than 1.4 million new cases are diagnosed annually worldwide. Roughly 5 percent, or 70,000, breast cancer patients are diagnosed at a late stage, after the cancer has metastasized — that rate hasn't budged since 1975, despite all the medical advances and awareness campaigns. For these women, the prognosis remains grim: Only 1 in 5 will survive five years out. Fundamental questions still elude researchers: Why do a third of all women considered cured by their doctors suffer recurrences? Why are breast cancer rates rising in Asia, where they've been historically low? Is it even possible to prevent breast cancer, and if so, how?

“A popular gripe among advocates is that too much is spent on awareness campaigns — walks, races, rallies — at the expense of research. (And really, when Snuggies go pink, haven't we hit our awareness saturation point?) There's a case to be made for that, of course, but there's another explanation, one that exposes an ugly, even blasphemous truth of the movement: Breast cancer has made a lot of people very wealthy. The fact is, thousands of people earn a handsome living extending their proverbial pink tin cups, baiting their benefactors with the promise of a cure, as if one were realistically in sight. They divert press, volunteers, and public interest away from other, more legitimate organizations, to say nothing of the money they raise, which, despite the best intentions of donors, doesn't always go where it's supposed to go." http://www.marieclaire.com/world-reports/news/breast-cancer-business-scams

I look at pink ribbon items with questions in my eyes. I analyze every pink ribbon product I see. I am seldom impressed. I am not grateful for the state of the pink ribbon today. Why should I be grateful for the wealth mongering that happens at my expense? Why should I be grateful for the nonsense surrounding a body part? Why should I be grateful when someone tells me “If only one person is helped, then it’s okay!”

To me, this is analogous to having a room full of babies in cages. All the babies would have appropriate food, water, safety and shelter, but they wouldn’t have their freedom. They would be on display for all to see and to jeer at by pointing out the fact that they are in cages. Funny jokes would be made about them. Hilarious skits would be written and gimmicks would be created. Caged baby charms would be marketed to all. A ribbon would be used as a key to unlock the cages. Images of caged babies would be put on tee shirts, water bottles, caps, and the like. All these babies on display would have the goal to make people “aware” of childhood cancer … that children with cancer are caged by such a disease, therefore one needs to make donations to break them out of their cages.

Tell me, how successful would this public relations event be? Do you think people would accept it? I don’t think so. People would be up in arms! How dare anyone put a baby in a cage, even if it is “for charity?”

That’s how I feel about the pink ribbon. How dare anyone do such a thing? How dare they make the disease that is taking too many lives into a fluffy pink party? If one person is motivated to make a donation to a child’s cancer research foundation, then does that make the cage scenario right? If it’s not right for the children, then why is it right for women with breast cancer?

Many have told me that the pink is necessary because the horror of the reality of breast cancer just can’t be faced every day … that it’s too much.

I agree … it IS too much … yet 140,000 – 170,000 women (and men) live with this horror every single day of their lives … and that’s in the United States alone. We don’t have accurate figures on the numbers of those living with metastatic breast cancer. Up to 50% of Americans believe that metastatic breast cancer is curable because they don’t understand what metastatic breast cancer is. Up to 70% believe metastatic breast cancer is curable “if it is caught early,” thinking that the time of diagnosis is the definition of “early” as opposed to the stage of diagnosis. 40,000 women (and men) die of metastatic breast cancer each year. We can’t dismiss this horror, nor can we hide it in the pink. To do so is to place us in a cage, telling us, “You should be grateful that you have food, water, shelter and safety. People like you are living longer than ever. That’s enough for now, so just sit there in your cage and let us party. It’s okay if we make fun of your [absent] breasts, focusing more on where your disease started rather than on the fact that it’s going to kill you. As long as we get one more woman to get a mammogram, then it’s all good.”

No, it’s not all good and it’s far from being enough. We need more. We need more than a pink ribbon party.


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    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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    White Cell Count
    Xile

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