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Why are people angry at Komen?

9/28/2015

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I typically avoid pointing fingers, but in a sense, the gloves are off now.  I'm "fighting like a girl."

The Susan G. Komen Foundation has trademarked the tag line "For the Cure" as their main purpose for existence.  Their advertisements include phrases like, "Keeping a promise," (This is because Komen founder, Nancy Brinker, promised her dying sister, Susan G. Komen, that she would find a cure), "ending breast cancer," and of course, the ever-present, "race for a cure." 

When you ask the average citizen om the street wht does Komen do, they will typically respond with something along the lines of "research for a cure for breast cancer."  after all, that's how they promote themselves.  (By the way, I will be interviewing people in the month of October about their thoughts on what Komen does.)

BUT ... that's not what Komen is about.

When I asked the San Francisco affiliate of Komen what their purpose was, the stated answer was, "We are a fund-raising organization."

That's it.

They raise money.

They keep 75% of the money they raise in the local community, providing grants to local organizations that typically provide "awareness, education and support."  The remaining 25% goes to the national headquarters in Dallas.

National headquarters is responsible for research distribution. They award grants "for the cure."  You would think that all of the money going to the national headquarters would go for that cause, but it doesn't.

Only 18% of it does.

And of that, only 15% goes into metastatic research ... research against the only breast cancer that kills.

Let's look at the numbers.

Let's say yesterday's San Francisco "Race for the Cure" raised $100,000.  $75,000 would stay in the San Francisco Bay area while $25,000 would go to Dallas.  Of that $25,000, only $4,500 (18%) would goe into research.  Of that $4,500, only $675 (15%) would go into metastatic research.

Yet, the common person participating in the "Race for the Cure," thinks ALL the money raised is going into research!


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THIS MAKES PEOPLE ANGRY!!!!!!

I have no problems with Komen being a support organization.  I know many local affiliates are providing necessary aid to people who are in desperate need of help.  More power to them.

However, I struggle with the manipulation of heart strings in order to pull on purse strings that misdirect funds.  Too many believe that Komen takes their hard earned dollars and truly puts them "for a cure."  Please ... Komen ... change your tag line to something more appropriate.  Perhaps, "Komen.  Support when you need it" is the direction you should choose.

You can go to my main page, "I Want More Than A Pink Ribbon" to link to sites that are actually funding research.  Make your dollars count. 

Another post for another day ... people are angry at Komen for making breast cancer the "shopping disease."  They are also angry that Komen continues to tout, "Early detection saves lives."  If this were true, then no one with an early stage diagnosis would ever become metastatic.  While the actual percentage of metastatic recurrence is unknown, it is generally accepted to be no less than 20% and is possibly as high as 30%.  Early detection saves SOME lives, but it's not the end-all-cure-all that Komen has made it out to be.  Komen refuses to back down from this mantra and fails to adequately educate women (and men) on the realities of metastatic breast cancer. 
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The incredible "smugness" of being

9/22/2015

3 Comments

 

It's hard to get people to agree on anything.  Two of the most famous English  idioms say, "on the other hand," or "on the other side of the coin," thus illustrating that people don't agree.  It's really hard to have such two divisive sides to the pink fence.

Yesterday, I linked to Peggy Orenstein's article, "Our Feel Good War on Breast Cancer," (April 25, 2013), and I quoted the following:

"The idea that there could be one solution to breast cancer — screening, early detection, some universal cure — is certainly appealing. All of us — those who fear the disease, those who live with it, our friends and families, the corporations who swathe themselves in pink — wish it were true. Wearing a bracelet, sporting a ribbon, running a race or buying a pink blender expresses our hopes, and that feels good, even virtuous. But making a difference is more complicated than that."   

(If you haven't had a chance to read the article, please take the time to do so now.)

Wouldn't it be wonderful to be a part of something that could really make a difference?  However, that means work ... hard work ... and many times, it means letting go of antiquated ideas.  Sometimes, it means leaving the side of the fence that makes you comfortable (or virtuous) and climbing over to the other side that seems strange, foreign, uncomfortable ... or complicated.

In 2014, Pfizer conducted an extensive survey regarding metastatic breast cancer and the following information resulted:

"50% of those surveyed believe breast cancer progresses [becomes metastatic] because patients either did not take the right treatment or preventive measures." 

I can almost understand the general public believing that, but one of the unfortunate truths of the Pink Ribbon Army is that many cancer "survivors" (those who show no evidence of disease) also believe this.  They believe they are cancer free as a result of something they, the "survivor" have done right and the metastatic patient is metastatic because they have not done the same "right things."

This was never so obvious as it was yesterday in the comment section below a post about a young woman who was diagnosed de novo (from the beginning) with Stage IV disease.  I tried to screen shot the conversation (see photo above), but it's rather small, so I'll paste it here:


furiouscuriouscancersurvivor says:
September 21, 2015 at 9:29 am

"This indicates she has an aggressive form of the cancer. Don’t worry so much because breast cancer is not very aggressive usually and with diet and lifestyle modification it can be beaten!"

Amy. says:
September 21, 2015 at 10:21 am

"Beth knows what she is talking about, Furious. She will be ok.."


Vickie Young Wen
says:
September 21, 2015 at 1:22 pm

"Did I just read your comment correctly? Did you seriously just say that “because breast cancer is not very aggressive usually and with diet and lifestyle modification it can be beaten!”? I do hope you are being sarcastic. Diet and lifestyle modification is not a treatment option for any stage of breast cancer."

furiouscuriouscancersurvivor says:
September 21, 2015 at 1:42 pm


"Are u kidding me? I am surviving for exactly 7 years with this common sense approach! Spread the word. Only 15% of cancer survivors change their diet after diagnosis according to an Aussie study!"

Vickie Young Wen says:
September 21, 2015 at 4:02 pm

"No, I’m not kidding you at all. If you are telling me that you treated your breast cancer with ONLY diet and lifestyle changes and that you are now cancer free, then I will challenge you to prove it. If you are telling me that you are cancer free and remain cancer free after conventional treatment and that you attribute your cancer free status to diet and lifestyle, then you are the exact person who blames a person for being metastatic. If this is your thought process, you are blaming the cancer patient. Please … educate yourself. It is not the fault of the patient that they became metastatic. While diet and lifestyle will reduce risk, they will NOT prevent breast cancer, nor will they prevent recurrence. Count yourself lucky." 

I looked up this commenter's blog and discovered that like Suzanne Somers, she had surgical removal of breast cancer, but declined further treatments.  She gives credit to "diet and lifestyle" changes for being cancer free.  I do hope she remains that way for the rest of her days, but her smugness at being disease free is disconcerting.  She's convinced that she is doing something right and she's convinced that breast cancer isn't very aggressive and that if all women did what she did, then they would have the same results of being cancer free.

Ignorance is appalling in any way, shape or form.  Many who fully embrace the pink ribbon approach (and buy anything with a pink ribbon on it) feel the exact same way that the person above feels.  There's an unspoken (often, spoken as well) idea of "I survived.  I did cancer right.  I deserve this ribbon and no one has the right to deny me of this.  It is my reward."

No one denies the cancer-free patient anything.  What those of us who will never be cancer free expect, though, is for the cancer-free to be fully educated on what it means to have metastatic disease.  If the entire Pink Army stood up and demanded that their hard earned dollars go into research, then I imagine that we'd see some change pretty quickly.

But, it's easier to buy the latest Bradford Exchange pink ribbon product, or the latest pink Lokai bracelet, or the latest pink Rafaella jacket, because, after all, "I'm cancer free and I deserve it."





3 Comments

It's time to get angry

9/21/2015

2 Comments

 
One of the things I've learned in my year of "official" advocacy is that in order to be heard, a certain degree of anger and aggressiveness must be used.  It's a fine line ... because, to be a voice of change, one must be willing to challenge the status quo and be willing to challenge the comfort status of that you are trying to change, yet one can't be so angry that complete alienation from the very ones who need to hear your voice occurs.  I'm still trying to find my voice and I'm still trying to learn balance.  Some days are better than others.

In order to bring about change, an advocate needs to educate *WHY* change is needed.  This can be hard to do in a world of feel-good cause marketing.

We're all aware of the massive pink ribbon movement that beautifies breast cancer.  The juggernaut of fund raising agencies using the pink ribbon is flooding social media with their ads asking people to donate in order to fulfill a "promise to end breast cancer."  I often comment on those ads (if they're in my feed, then they are fair game), pointing out that only 18% of that organization's funds goes into research (that's using their own annual reports) and of that 18%, very little goes into metastatic research. 

This exchange happened last week.   I'm not about "naming and shaming," but I want to focus on a much bigger issue here.  

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A simple image of a poster illustrating the need for more.  That's it.   The Accidental Amazon is an amazing blog that gives voice to the needs of research towards metastatic breast cancer and she gives clear voice to how the pink ribbon has failed.  The poster is very clear ... if we are not aware of metastatic breast cancer, we are not aware.

Check out that response!  "Disgusted" ... accusations of "bitterness and anger." "Let people do what makes them feel good."  "Mind your own business" ... and get this ... "FIND YOUR OWN MONTH" ... and of course, the plea, "stop being angry." 

Seriously?  Those with metastatic breast cancer need to find their own month?  Quite frankly, the entire month of October should be devoted to those with metastatic disease (You know ... the ONLY kind of breast cancer that KILLS!) and have one day to celebrate those who are cancer free.  Yes, being cancer free is worth a huge party ... but not at the expense of those who are dying.  For all those shouting out, "I'm a survivor," you must remember ... you are not cancer free because you did something right.  Those who have metastatic disease are not dying because they did something wrong.  Cancer free individuals are not being rewarded while metastatic individuals are being punished.  It boils down to the fact that, after all this time, we still don't know enough about this disease and only research is going to help us learn more.

Why was the above response made?  It's not unique.  I know I've been told to stop being angry and to stop being "bitter."  (I don't think I am bitter.)  But why is  Pink Army so offended when the Dying Army challenges the ocean of pink? 

Peggy Orenstein wrote an outstanding article for the New York Times (April 25, 2013) entitled, "Our Feel Good War on Breast Cancer."  Please ... click on the link and read it now. (It will open in another window.)  It's quite long, but very well researched and gives one of the most comprehensive overviews of mammography, detection and treatment that you will find outside a medical journal.  

Her closing paragraphs clearly catches why the sea of pink is offended.

"The idea that there could be one solution to breast cancer — screening, early detection, some universal cure — is certainly appealing. All of us — those who fear the disease, those who live with it, our friends and families, the corporations who swathe themselves in pink — wish it were true. Wearing a bracelet, sporting a ribbon, running a race or buying a pink blender expresses our hopes, and that feels good, even virtuous. But making a difference is more complicated than that.

"It has been four decades since the former first lady Betty Ford went public with her breast-cancer diagnosis, shattering the stigma of the disease. It has been three decades since the founding of Komen. Two decades since the introduction of the pink ribbon. Yet all that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk."


It gets down to this ... 40,000 people in the United States alone die every single year from metastatic breast cancer.  Every single day in the US, 110 die from this disease.  Most of these deaths are women.  It's time to send the message that simply being "aware" of breast cancer is not enough.  It's time to send the message that shopping does not fund a cure.  It's time to stop buying all the pink stuff that makes one "feel good," and it's time do something concrete for change.

Yes, it's time to get angry. 
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Not the news I wanted ...

9/18/2015

1 Comment

 
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I went to the oncologist yesterday for scan results.  The good news is that my organs remain clear.  The report for my liver (which had mets in May 2014) continued to say that there were a few hypodensities "too small to classify but assumed to be metastatic disease."  In other words, "nothing to see here, move on."

My bones are a different story.  The bone scan report was very confusing and pretty much impossible to understand.  The medical team had to ask the radiologist for clarification.  After the scan was reviewed by three different radiologists, the clarification came back that I have new lesions (tumors) in my right femur, close to the hip joint, in my right shoulder blade and at the right side top of my skull.  There also appears to be worsening disease in my ribs, pelvis and spine.

I have been on a new treatment routine since June.  It has a clinical record of having no progression success for close to two years, yet I'm having progression after three months.  I had radiation just after starting this treatment and it's not known if that has any impact on the efficacy of this treatment.  Therefore, we are going to continue for at least one more cycle and maintain "watchful waiting."

It's another one of those mixed bag things.  While I'm very grateful that my organs are not compromised at this time, I am concerned about my bones.  I'm concerned that the cancer is on the move.

I'm also puzzled at the randomness of this disease.  Back in June, the progression in the bones was on the left side with new lesions in my left hip and worsening disease in my left hip socket.  This time, new lesions on the right, in seemingly random locations, with no rhyme or reason.  Yikes!  Just the idea of having a bony met on/in my skull is disconcerting.  To use a very bad pun, it will take some time to wrap my head around this! 

God is good and that's the main thing. 





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Cancer free! and broken pieces.

9/14/2015

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Three years ago today, I heard the magic words that all cancer patients wish to hear, "You are cancer free!"  Yes, I heard those words and I looked over at my husband and leaned back against the wall behind me and said, "I think I'll cry now."

Such blessed words!  My husband and I were incredibly grateful and we went home with light hearts, believing in the miracle of healing through science.

Only, it wasn't true.  I wasn't cancer free.  Only six weeks later, I was experiencing extreme neck pain that I attributed to a fall.  I suspected bone mets, but too many people told me that couldn't be since I had just received a "cancer free" diagnosis.

Three months and twenty days (111 days) after I was told I was cancer free, I was told that I had extensive disease throughout all but two of my vertebrae, in both sides of my hips and in one rib.  The cancer was so bad in my neck that I had a broken vertebra and the two vertebrae below the broken one were in danger of fracturing as well. 

My oncologist said that this was not recurrent or returning disease, but was disease that had been there from the beginning, held in check by neoadjuvant (before surgery) chemotherapy.  I was a transfer patient in from overseas and had been seeing my oncologist in the US for less than six months when I was known to be metastatic.  My original diagnosis with her was revised to be Stage IV from the beginning.

Here I am ... days, weeks, months, years later ... still living with cancer.  It's been 1,333 days since I first heard the words, "You have breast cancer."  Sometimes, it feels like it's been forever.  The cancer is now in every vertebrae, more lesions in both sides of my hips, in one hip socket, in several ribs, in my sternum and in my liver.  I've had 3  biopsies under local anesthesia, 2 surgeries under general anesthesia, 5 in-office procedures that were more painful than cancer itself, 8 rounds of intravenous chemotherapy, 69 radiation sessions, 11 months of oral hormone treatments, 7 months of a clinical trial, 13 months of oral chemotherapy, and now, entering my 4th month of new hormonal treatments combined with a pathway blocker.  I've worn a neck brace for 4 months and I've used a crutch for 6 weeks.  I've traveled thousands and thousands of miles (I commuted from northwest China to Hong Kong 8 times and currently,  a single visit to my oncologist is 102 miles round trip) and I've had hundreds of doctors' appointments.  I think it is obvious the measures I will take to keep pushing this disease back as far as I can for as long as I can.

I was interviewed last week for a human interest story on living with breast cancer.  I'll keep you informed on when the article prints.  One of the questions asked was, "How has your life changed or how to you approach each day, knowing you have this disease?"

While I've been asked this before, I'm always a bit hard pressed to give an answer.  One day might have one answer while another day might have another answer.  On that particular day, I said, "I'd like to think that I live my days with purpose, with intention."

I have a bunch of inspirational thoughts on my kitchen wall (picture for another day), one of which says, "Live like it's your last day."  I like the sentiment behind that ... that each day should have meaning, just in case it's the last day you have.

But you know what?  It's absolutely exhausting to live that way.  There's a certain level of adrenaline that goes with that type of approach and after a while, your body just tires of "living on the edge."  Some days it just seems impossible to sustain that kind of thinking and that it would just be simpler to lay down and go to sleep, never to awaken again. 

I'm not keen on the battle metaphors used in Cancer Land, but I understand them.  I am so tired ... beyond tired ... beyond fatigue ... beyond exhaustion ... but each day, I get up to live another day.  I'm fortunate in that I'm not in pain (very little) and I'm at the top of the scale used to measure patient functional abilities.  I have friends who do not have cancer who cannot keep up with me.  The mental parts are often the hardest parts, though. 

I celebrate with each and every friend who celebrates their cancer-free anniversaries.  My metastatic club needs to have the doors slammed shut and locked to allow no others in.  I do not want anyone to join me here. 

However, sometimes, I just ache with jealousy and envy when I read public posts of these anniversaries ... and see all the lovely words of encouragement and praise saying, "We knew you could beat this!" or "Cancer didn't stand a chance against you!" or "God is so good!"

Wonderful words to hear, yet piercing to my soul.  I didn't beat cancer, cancer stood a chance against me and dare I say it?  Was God not good to me when I was given a terminal diagnosis?

Metastatic disease has changed me.  I have a batik print on my wall that says, "My cup overflows" and many, many days, I do believe that.  However, the shattered pieces of my cup are now in a beat up plastic bucket that looks ready to spring a leak at any moment and I'm asked more about "What's on your bucket list?" than "What are your blessings?"  I can (and do) find miracles in every single day (Waking up is a miracle!), but it's hard to do sometimes.  Metastatic disease has challenged every fiber of my being.

I'm hard pressed to truly express my multi-faceted, multi-level emotions.  I can swing from one extreme to another, all within the same day, and wonder what in the world am I doing?  

I am desperate to live.  I do not want to die.  And so I press on, one day at a time.  There's so much I do not understand and that gives a sense of desperation as well.  I like how Augustine of Hippo said, "Trust the past to God's mercy, the present to God's love and the future to God's providence."  (I wrote that quote two years ago on this anniversary date as well.) 

I have scans tomorrow.  I always prepare myself for worst case scenarios so that I'm not caught off guard.  I also tend to freak out the week before scans (They don't call it "scanxiety" for nothing!) and I'm at the peak of my freak out now.  I have to cling to the core of my beliefs that God IS good ... regardless of my outcome ... because in spite of all my questions and queries, I do still believe in a God of love. 

Two years ago, I also wrote that Albert Einstein is quoted to have said, "There are only two ways to live your life.  One is as though nothing is a miracle.  The other is as though everything is a miracle." 

I'm still choosing to live a life of miracles, but I'm honestly saying that it's not easy.

I am so tired.
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"Either you'll make it or you won't ...."

9/10/2015

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Too often, the picture of women with cancer shows a woman with a bald head and a brilliant smile. This picture shows my friend coming out of anesthesia and being told that a liter of fluid had to be drained from her chest cavity and that she had to stay overnight instead of going home.
As most of you know, this summer was not a good summer.  It was filled with multiple challenges and grief was the theme.  Lots of grief.

In mid-June, a good friend of mine started to experience abdominal pain, bloating and abnormal menstrual cycles.  Since she is 56 years old, she thought she was finally going to enter menopause and waited it out for a few weeks.  However, the pain kept increasing so she went to a doctor for a checkup.  She was shocked to find out that she had a large tumor in her abdominal cavity, as well as a lot of fluid.  She was referred to a gynecological oncologist who was confident this was ovarian cancer and she was scheduled for major surgery on July 27.   She had a complete hysterectomy, as well as the removal of her diseased omentum, as well as scraping cancer off her diaphragm and other organs.  She was grateful to not have to have any bowel resection.

It was a brutal surgery with a brutal eight-day hospital stay.  Pathology revealed it was advanced ovarian cancer, staged at high grade Stage 3C.  The doctor said there wasn't really any difference in treatment for Stage 3C or Stage 4 (the next and last stage).

I've been fortunate to be able to attend many of the appointments my friend has had with her medical team.  I am able to be a liaison of sorts as I'm familiar with most of the terminology; although, there's definitely things I don't know, especially in relation to ovarian cancer!  

On Friday, my friend went to have her port surgery, in what was supposed to be a quick in/out procedure.  However, it was discovered that she had fluid buildup in her chest cavity (a liter had to be drained) and she ended up spending yet another night in a hospital.  To say she was furious and upset is an understatement.   This fluid can mean that she's Stage IV, but since it's impossible to tell if it's a result of damage to the diaphragm or if it's metastatic to the chest cavity, she simply presses on to the next step, chemotherapy.

She did ask her doctor about her prognosis.  He looked her straight in the eyes and said, "You'll either make it or you won't.  If you are one of those who make it, do you really want to spend that time worrying over the possibility you won't?  Let's just get you through this initial treatment first."

Wow.  That sounds kind of harsh, but that's the way it is with ovarian cancer.  Statistics don't really matter. For those with late stage disease, there is no way to predict whether or not the cancer will return.  It truly is a waiting game.

Ovarian cancer is one of those cancers where early detection would truly make a difference.   But where are the screams and cries of "Early detection saves lives!" for ovarian cancer patients?  Where's their hoopla?

I went with my friend to her first chemotherapy yesterday.  I winced a bit when I met her infusion nurse.  She had on a pink ribbon pin and her name tag was surrounded by pink rhinestones. 

My friend doesn't have breast cancer.  She has ovarian cancer.  Additionally, most of the patients in the infusion center at that time were men and I'm pretty sure none of them had breast cancer (although, it is definitely possible for men to get the disease).  I did notice one woman coming in later who was covered in pink ribbons from head to toe, obviously being treated for breast cancer.

My friend takes it in stride, but I get angry on her behalf.  I'm so pissed that she has cancer and I'm pissed that because her cancer isn't in the sexy breasts that few people are aware of it and how serious it is.  Enough, already!  We lose over 20,000 women a year in the US alone to ovarian cancer.  Ovarian cancer needs more than a pink ribbon and it needs more than a teal ribbon.

It needs better tools and screening for early detection.  It needs to end.  My friend needs a cure just as much as I do.  As we both like to say, "We've got too much living left to do to deal with this."  Or, as that popular meme says, "Ain't nobody got time for this!"

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Epic Cluelessness

9/8/2015

4 Comments

 
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A young (under age 40) metster friend of mine relayed bits and pieces of a conversation she had with one of the administrators of a “champion” (for breast cancer patients) group she was a part of.   I am aghast at the cluelessness involved, and quite frankly, as I used to say in the Deep South (I grew up in Mississippi), “I’ve got my mad on.”

NO ONE should ever ask a metastatic patient if they are “dying” as they are in the process of pursuing treatments, or if they project an “attitude of dying” to their family as they get those treatments.

NO ONE has that right.

The context of the conversation was in light of the idea that mindset makes a difference in how we deal with this disease.  That to have a “dying mindset” was to have a “victim mentality” and that is what kills us.  Not cancer … but the victim mentality that “steals our happiness and joy.”

I had hoped we were past this bullshit. 

This “champion” group apparently has no distinction between early stage patients and metastatic patients.  No “discrimination” of any kind.  They’ll soon find out that this isn’t really a good mix because we Stage IV gals tend to scare the shit out of the early stagers.

We NEED the early stage patients to take up our cry.  You know why?  Because we have the unfortunate habit of DYING.  Our voices get silenced and we need those who do not have metastatic disease to carry the banner.  We need to be heard and we need to be heard NOW!  We need early stagers to face the fear headon and learn what they can about what it means to be metastatic.

Admitting the seriousness of metastatic breast cancer is NOT adopting a “victim mentality.” Admitting that one is dying of metastatic disease is not projecting a “victim mentality” to family. To suggest such a thing is a slap in the face to every mets patient who goes day after day after day; week after week after week; month after month after month; treatment after treatment after treatment -- doing everything possible to stay alive for the people at the very core of our hearts. To put it bluntly, yes, we are dying as we undergo these treatments and to suggest that a certain mindset will change that outcome is to truly illustrate the absolute ignorance of the reality of Stage IV metastatic breast cancer.

This entire debacle started when an early stage patient indicated that taking a hormone inhibitor wasn’t worth the side effects because now that the early stage patient had no breast tissue (double mastectomy) that she was at very low risk of recurrence.

Yes, early stage patients are still being taught the lie that early detection means a cure.  It doesn’t.  There are simply too many women who had early stage disease who become metastatic and DIE.   Until research is able to determine which tumors will become metastatic or not, then every early diagnosed patient would be better to assume they would become metastatic than not. 

I serve as a volunteer cancer mentor.  Last week, I had a phone conversation with my newest patient.    She had Stage 1 disease six years ago with a tiny 6mm tumor.  That’s less than a quarter inch.  That’s about the size of a square on standard graph paper.  That’s about the size of a pencil eraser.  She, too, had a double mastectomy and now, to put it bluntly, the cancer is fucking everywhere.  So much for early detection being a cure for her.

Remember Holley Kitchen’s video?  She admitted that as an early stage breast cancer patient that she believed that “no breasts meant no more breast cancer.”  

I have breast cancer all throughout my body.  It’s in every single vertebrae, in both sides of my hips, in one hip socket, in several ribs, in my sternum and in my liver.  I still have both my breasts and they are both cancer free.  Neither the presence nor absence of breasts have any impact on whether or not a patient experiences distant metastasis.  It's a matter of whether or not the cancer is already in the blood stream or lymph system.

The thing is, most Stage IV patients have been early stage patients before.  Most of us know what it’s like to walk in those shoes.  Only 4 – 6% of Stage IV diagnoses are made at the beginning of treatment. 

However, early stage patients, as shown in this conversation, don’t know what it’s like to be Stage IV.  We do have champions who take up the cause (i.e. Nancy from Nancy’s Point) but overall, the early stage folks are hesitant to become too involved in the metastatic world because it’s a scary place.  It’s not a fun place to be.

Even those of us who have been exposed to the deadly impact of metastatic breast cancer are hard pressed to know what the patient actually is experiencing.  I thought I knew a lot about breast cancer due to my mother dying of the disease, but I found out that I didn’t really know anything until I got it myself.

I can’t play by the rules of politeness and niceness when my life is on the line.  While I intellectually know it’s too late for me, I emotionally hope that something miraculous will happen in the world of research while I’m still alive.  If not, then I can’t play by the rules when my daughter’s life is on the line.  It’s not too late for her.  My time is too short to stop standing up to the wall of pink.  I will keep knocking that pink wall, brick by brick, until it starts to crumble.  I will not be silenced simply because I make some people (early stagers) uncomfortable. 

So am I dying every time I take a treatment?  Am I dying every night when I swallow the two pills that are hoped to keep the cancer from spreading further than it already has?  Am I dying when I go to the lab every month to track my blood counts and tumor markers?  Am I dying when I go to my oncologist’s office every month for a clinical checkup?  Am I dying when I go to the radiation clinic every day for a month to zap a tumor in my hip socket, hoping to kill it off before it fractures?  Am I dying when I go to the radiology department for scans every three months to monitor what’s happening inside my body?

Yes, I am dying.

In spite of the words of the administrator who wants to claim that “some of us are dying. Not all of us. Some of us are living.” those of us with metastatic disease are acutely aware of our impending deaths. 

I live my days with purpose and I live my days with joy.  Every single one of those steps I outlined above are because I value my life and because I want to live.  I am nowhere near the point of stopping treatment.  I want to live as long as possible.  I want to see my children graduate from high school.  I want to see my children go to college and graduate from college.  I want to see my children get married, should they choose to do so.  I want to see my husband retire.  I want to travel more with my husband.  I want to see my grandchildren, should my children have them.  I want to live to an older age.

To insinuate that because I recognize that many of these goals are not likely to happen and to insinuate that such an admission is a projection of an attitude of dying to those I love, is an absolute picture of epic cluelessness.

It’s time for the clueless to sit down and shut up when it comes to telling patients with a terminal disease how they should be living their lives.  If they wish to speak up for the metastatic community, then they need to listen to the metastatic community.  Hear us roar.

4 Comments

Lottery tickets

9/7/2015

12 Comments

 
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The California Lotto is well known throughout the state.  It promotes itself as *the* way to support education and schools.  It attempts to make everyone feel that if they buy that $1.00 ticket, then not only will the schools benefit, then YOU, the generous "donor," will benefit as well.  They try to let you know the odds of winning (slim to none), but most who regularly play the Lotto, ignore such information.  The idea of "getting something for nothing" or "the big payout" or the "big win" is an attractive draw that keeps the Lotto going year after year after year.

The California Lotto does indeed send funds into schools and education programs.  Since its inception in 1985, the Lotto has put $26.6 BILLION dollars into its stated goal.  It's been accountable in making sure it does what it's supposed to do.  They advertise this information quite a bit.

Here's what they don't tell you.  Since its inception in 1985, through July 2013, the sales income for Lotto tickets has been $74.6 billion.  This means that only 35% of those sales dollars goes to schools and education.  The rest of the money goes to retailers commissions ($4.9 billion); winner payouts ($39.3 billion) and operations ($3.8 billion).  (Remember, these numbers are total numbers between 1985 and 2013.  They are not annual numbers.  See page 12 of their 2013 annual report.) 

I wonder what would happen if that $74.6 billion (from Lotto SALES ... this means money from citizens' pockets) was donated directly to the schools?  Wouldn't you think it would make a much bigger difference?

The other day, I overheard this conversation between a middle-aged man and his elderly mother.  She was standing in front of the Lotto vending machine.

"Mom, if you want to donate to a local school, I will be more than happy to help you write a check to do so.  However, I will not help you buy a Lotto ticket."

"Son, I don't understand why you don't want me to help the schools!  It says right here that every dollar spent on the Lotto helps fund education and school programs all over the State!  Why don't you want me to help the schools?"

"Mom, I would love for you to help the schools.  We can write a check and you can send it to the school of your choice and 100% of that money will go straight to that school.  You will know exactly where that money goes."

"But, Son, I want to help the schools by buying a Lotto ticket.  After all, I might win something!" 

It was obvious there was more than a Lotto ticket purchase issue going on here and as a caregiver for my elderly in-laws, I recognized the memory issues that were also present in this conversation.  I smiled at the man in encouragement (I was with my mother-in-law) and he took a deep breath and worked on moving his mother away from the machine, all the while praising her desire to help the schools, but emphasizing that Lotto tickets wasn't the route. 

That pretty much sums up my feelings towards products that sport a pink ribbon.  Rather than spending money on such product (that may or may not fund any type of research), please consider making a donation directly to the organization of your choice that funds your desired goals.  For example, if you want to help with much needed community support, then find an organization that provides that support and donate directly to it.  Rather than spend $10 on an item that takes a small percentage of the $10 and filters it down through a fund-raising organization, donate the full $10 directly to the end user.

Because of the amount of Internet reading I do on breast cancer, I am constantly bombarded with advertisements for pink ribbon products.  They are coming in fast and heavy now as the world (yes, the world ... upcoming post on the international economic impact the pink ribbon has had) gears up for Pinktober.  An ad that contained this product showed up today:

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It is from a company that pimps out the pink ribbon on anything and everything and it's all about  making money.  The fine print makes this statement:  "We remain deeply committed to breast cancer research. Each year we donate a portion of our proceeds to prominent organizations committed to supporting and advancing the fight for a cure. Through research, awareness, education and early detection, we will make a difference!"  There is no mention as to who the "prominent organizations" are.  Of course, I sent an email and will let you know if I receive an answer.  However, the products sold by this company will be used by countless others to raise money for "breast cancer awareness!"  Such products support the same "feel good" emotion that the sale of Lotto tickets generates.  It makes the average donor feel like they've made a difference and hey!  They get something as a result of the donation ... a pink tee shirt, a pink pen, a pink cap, a pink bracelet, a pink cup, a pink water bottle, a pink mask, a pink pencil, a pink hair tie, a pink shoelace, a pink jacket, a pink bucket, a pink magnet, a pink keychain, a pink poster, a pink cookie, a pink cupcake, a pink party, a pink pennant, a pink boa, a pink hat, pink socks, pink pants, pink, pink, pink!

This tee shirt is quite offensive to me because it's very obvious that every ribbon does NOT make a difference.   As I read through the 19 comments posted under the ad, I noted that 16 of them contained comments like, "I'm a survivor!"  One comment asked to focus on all cancer and not just breast cancer and two comments were promoting quackery.  There was no mention of metastatic breast cancer and how the pink ribbon movement ignores those living with terminal cancer.

I WANT MORE THAN A PINK RIBBON!
PINK IS NOT A CURE!


I won the Lotto.  Against all odds and against all the pink promoted propaganda, I was diagnosed with a terminal disease at age 49.  In spite of regular mammograms, in spite of regular ultrasounds, in spite of regular clinical exams and in spite of checking out every single lump that ever crossed my breast, I was still diagnosed with advanced disease from the beginning. 

Don't gamble with your hard earned money.  Go local with your support designated donations and go smart with your research designated donations. 
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


If you are looking for a national organization that funds metastatic cancer research, please donate to Metavivor. 


12 Comments

Negativity

9/1/2015

6 Comments

 
I’m torn about how to say what I want to say. 

First of all, I don’t want to pretend that I’m a master of any kind, nor do I live under the delusion that my thoughts and opinions really make a difference to anyone other than myself.  As a writer, it helps to write things down, so that’s the primary purpose of this blog.  I don’t look for comments or praise, but I look for the cleansing of cobwebs in my brain.  Sometimes, writing helps, sometimes, not.

I am in the midst of a dark day.  The sun is shining brightly, I’ve not had to take any pain relief and I’m at home with my beloved family.  Yet, I feel the familiar fingers of fear, desperation and anguish closing in around my heart, making me feel shut off from those around me.  I’m hard pressed to communicate these inner emotions, but I’m going to try.

Summer, my favorite season of the year, never really happened for me this year.  My daughter had a great summer, but she slept away from home (without the rest of her family) for eighteen of those summer days, not to mention her many day trips.  While I am incredibly proud of the young woman she is becoming, my heart grieves over her growing up.  She’s growing away from me … rightfully so … but there is a mourning process involved in her maturation. 

Same goes for my son.  Only sixteen months younger than his sister, he, too, is growing beyond belief (both physically and mentally) and seeing the photo that showed him now taller than his dad was a heart-stopper.  My “little boy” is gone and a delightful young man is taking his place.  While I know this young man, I also feel like I’m getting to know a whole new person as well.  

I had disease progression which resulted in a change of treatment and undergoing 20 radiation sessions to my left hip socket in hopes it would reduce the risk of fracture due to the increasingly active and growing tumor there.  Time will tell whether this was successful or not, but in the meantime, I deal with fatigue, the major side effect of both the treatment and the radiation.

My dad fell in early June and broke his hip and died July 28 after seven weeks of declining health.  This was very traumatic for my siblings and me as we struggled with our adult emotions that seemed to fall back into childhood patterns.  We had differing opinions on handling my dad’s dying process and my soul is still torn to pieces over what was both said and inferred (and perhaps, things misunderstood by my own dying self).  My heart almost skips a beat when I try to process everything that happened in that seven weeks, and at this point in time, I don’t see a way out of the turmoil left behind.  I had thought the acceptance of death in an elderly person (My dad was 84-years-old.) would be easier to process, but it’s not and I hurt when I remember he is no longer here on Earth.   Grief is a physical anguish that has no physical form.  

Our family vacation was piggy-backed onto a trip to see my dad (scheduled before his fall); thus, it was hard to find joy on a beach, knowing my dad was dying.  Additionally, my husband ended up having to work many hours on this vacation and a standing  memory will be of one waiting for him to finish up so we could leave together to go do something.  It wasn’t relaxing.

The day after my dad died, a “positivity guru” posted the following quote on Facebook as the banner for a new group she was starting:

“Whatever you hold in your mind will tend to occur in your life. If you continue to believe as you have always believed, you will continue to act as you have always acted. If you continue to act as you have always acted, you will continue to get what you have always gotten. If you want different results in your life or your work, all you have to do is change your mind.” (Anonymous)

This was in direct reference to cancer and various treatments and I strongly objected to the quotation, using the following words:

“Cancer is not in my mind. It's in every vertebrae, in both sides of my hips, in one hip socket, in my sternum, in several ribs and in my liver. I live a mostly normal, active life with minimal pain, although there have been occasional bad turns. My mind has no bearing on my positive response to treatments. I've been living with this damned disease for three years, six months, one week and two days. I'm doing nothing different than others and claim no control over this disease. Being a "long time survivor" is more a matter of luck and to claim it is due to positive/changed thinking is a grave disservice (and judgement) to those who have already passed away.”

She replied back to me:

“You are wrong in saying I am implying blame for people who died. You are projecting your negativity on me. I prefer to live my life in the light and don't think it is a coincidence that in my case, every "evidence-based" doctor was wrong about my survival because they failed to factor in that which they do not understand.” (The “factor in that which they do not understand” was reference to the idea of being positive and surrounding yourself with only positive stories.”)

Later in the conversation, she indicated she was feeling a “barrage of negativity.”

That brings up a current conundrum.  Since when is disagreeing with someone a declaration of being negative?  Since when did the world decide that we have to live in agreement over everything all the time?  Since when does challenging something become a statement of negativity?

This “guru” went on to leave the group where this conversation took place (and I’ve only quoted her words and mine) to post only on her own page and in her own groups.  That’s all fine and good, except for what she publicly said about us:

“I quit a fb cancer group yesterday because they were such a negative energy vortex. If theres [sic] one thing cancer has taught me, its [sic] to avoid energy vampires. It breaks my heart because i [sic] really feel that bathing yourself in negativity is the last thing we need to do to heal, and i [sic] just want to hug them. But its [sic] pretty hard to hug piranhas in a feeding frenzy!”

Is that what I am?  Am I a piranha in a feeding frenzy simply because I don’t want to stand by and see women with cancer bullied by the “positivity” mantra?  I’m an “energy vampire” because I challenge this mindset?  Being realistic about this disease and what it does to the human body is being negative?

I really don’t have a major problem with someone believing that positivity can change their outcome.  However, I do have a problem when that same someone starts preaching it with the same fervor as a religious evangelist that it is the appropriate way in which to live with cancer.  Living positively can most definitely help you get through your days, but it won’t do anything to change the outcome of cancer.

I was saddened to read of the death of another young woman, only age 45, who died of metastatic breast cancer.  She was also determined to live the positivity mantra.  She was convinced that her embrace of both alternative concepts and conventional medical treatments would make a difference in the outcome of her life with metastatic breast cancer, but unfortunately, she is not one of the fortunate 22% who live five years following a mets diagnosis.  She lived 42 months with the disease.  She lived fully and she lived fully on her terms … but she was wrong in believing that positive thinking would extend her life to the decades that she wanted.   She, too, accused those who acknowledge the reality of death due to metastatic breast cancer as being negative, and to use her words, we are “storm chasers instead of cure chasers.”

Fast forward to National Dog Day.  This made up day falls on August 26 and Facebook was filled with pictures of beloved pets.  Kind of fun and cute.  While I’m more of a cat person, I can appreciate a furry family member of any kind.

But then “pink” had to ruin it all.  Susan G. Komen (the organization I seldom mention anymore) had the gall to post a photo of dogs wearing pink bras filled with pink balloons, using the following tagline:  “The dog days of summer are over! Now let’s talk about how cute these dogs are, showing their support for breast cancer awareness! ‪#‎NationalDogDay”

Seriously?  I mean, really?  I am baffled at the joy and delight people get over pinkifying a disease that kills, simply because the disease starts in the sexy breasts. 

The metastatic breast cancer community has gotten to where we tend to ignore Komen and its oblivion and its obsession with pink feel-good shenanigans.  However, this hit a raw nerve and once we heard about it, we made our voices heard in the comments.  Our anger and disgust was quite obvious.

The responses to our comments started to come in … “quit being so dam [sic] bitter” … “I'm a huge supporter of breast cancer awareness” … “This is cute, for me no matter what is in the picture. If it helps to draw any kind of attention to the awareness of breast cancer. I support breast cancer awareness no matter what.” … “Spend less energy on being negative and more on trying to live each day to its fullest.” …

Did you see that?  “Spend less energy on being negative and more on trying to live each day to its fullest.”

Do you know how hard it is to live each day to the fullest, knowing that every single day, 110 people in the United States alone take their final breath as a result of this disease?  Their “living to the fullest” means dying.

I’m supposed to laugh over that?  Or, be “positive?”  Or, stop being so “dam bitter?”  Or, chuckle over dogs in balloon stuffed bras?  Or, look the other way when “awareness” becomes a sex-related game for all to giggle over?

It’s too late for my mother who died of metastatic breast cancer at age 52.  It’s too late for me, diagnosed at age 48, still living at age 52, but living with the knowledge that I’m actively dying.  I DO live each day to the fullest and I don’t need anyone telling me that challenging injustice is spending “negative energy.”

My daughter is 15-years-old.  It’s not too late for her.  The cycle needs to be broken now. I have no desire for her to face this disease when she is 52.   

When I was first diagnosed with breast cancer, I said I didn’t want to be a voice of breast cancer.  I unwillingly became an advocate when diagnosed with mets.  I do wonder if I make a difference, but if the only difference I make is in the life of my daughter, then it is quite enough.  She is the reason I keep shouting into the sea of pink, hoping for change.

Last night, I held hands and cried with a woman in my local metastatic breast cancer support group.  She has decided to stop chemotherapy treatments and hopes to be in some immunotherapy clinical trials that are less toxic.  She has extensive mets, including the rare metastatic occurrence in her bone marrow.  She, too, has a 15-year-old daughter and we wept, not only for ourselves, but for our daughters.  When we say we "fight," we have them as huge reasons not to give up, but also as huge reasons not to pursue treatments that will only extend life in a miserable way.


Every time I turn around, pink is flashing in my face, hiding the river of tears that flow each day as people mourn their loved ones.  The alternate reality of breast cancer is everywhere.  This is what I saw as I drove out of my neighborhood today.

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I want more than a pink ribbon.  Ribbons are not a cure.  Shopping does not fund a cure.  Cancer is not pretty in pink.
6 Comments

    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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