They live on opposite ends of the globe ... one in Tasmania, Australia, one in California, United States.  Yet their lives are on a parallel path, waiting for their final breath.

They both have been living with metastatic breast cancer and they both have declined at pretty much the same rate.

And so we wait.  We wait for their final breaths that will result in the flurry of phone calls and/or emails. 

And we look at photos and we remember.  We cry.

And they

Last week I returned from a ten-day trip to the East Coast.  I spent a few days in Philadelphia attending the LBBC Metastatic Breast Cancer Conference (More about that later.) and then my 16-year-old daughter flew out to spend a week in New York City.  I did this trip last year with my 13-year-old son and really looked forward to repeating it with my daughter.

Unfortunately, I am not the same woman I was last year.  I was sick the entire time I was on the east coast and it was so much harder for me to get around.  I don't have the same level of energy I used to have and going up and down those stairs to subway stations was very difficult at times.  The difficulty wasn't in pain, but in simply not having the muscle strength I used to have.

I've been back a week and I've spent most of the week resting in bed whenever possible.  I'm exhausted.  Fortunately, my scans revealed that the cancer is mostly stable, with some improvement in my liver and nothing is showing up in my lungs.  My bloods are fine, but I'm constantly short of breath, so we we're working on that.

In light of having a low-key week, I decided to go back in time.  When I was first diagnosed in January 2012, I read everything I could about breast cancer.  I read early stage material, I read metastatic material, I read conventional treatments, I read alternative approaches.  I scoured every website I could find.  I took a crash course in breast cancer (which is now why I advise people to not do that ... it can be quite overwhelming) and finally, at some point, I said, "Enough.  I know enough for now." I went through another flurry of crash learning in 2013 when I was definitively known to be metastatic.

Last week, I decided to follow up on several of the people I remembered from that time.  Being chronically fatigued means your mind doesn't work right and I was wandering through all those alternative suggestions again.  In spite of my staunch support in evidence-based medicine, the idea of something as simple as diet and supplements started to grab hold of something in my brain. 

"What if they are right?  What if it really is that simple?"

I went back to the threads I had devoured and found that every single one of the women who only pursued alternative approaches had died.  Every one.  These are the women who rejected all conventional treatments ... no surgery, no chemo, no radiation ... just diet, exercise, supplements, expensive trips to Mexico to clinics ... all dead.

I had followed two women who used only medicinal marijuana and they both died.  Their last posts were literally insane ... the paranoia they exhibited was so extreme that it made me scared for the friends I know who are currently using marijuana for curative purposes. 

I checked in on the cancer wannabes.  I've never been able to figure these women out, but there's one in the BCO forums who had cysts in 2013 who self-determined that she had breast cancer and gave out alternative advice left and right.  She's still doing that.  I didn't bother to read too much more of her story as it brought on too much anger (She's one who believes that those who die of this disease bring death upon themselves.  Don't get me started.)

I checked on one young woman who claimed to have three cancers (not metastatic, but three different cancers ... breast, liver and intestines) and who claimed was on a waiting list for a liver transplant because her own liver had only 10% functionality.  I had challenged her on that one ... and she looped her lie around to "Oh, I'm so sorry, but my doctor lied to me ... I'm not really on a list."  She now claims that she only has breast cancer and that natural treatments got rid of the cancer in her liver and the cancer in her intestines.

A third woman still has me blocked, but her claim of metastatic disease was challenged because her firm declaration that she was diagnosed without ever having a biopsy (due to medical phobias) and that the doctor was going to do a bilateral mastectomy, followed by chemo, radiation and five years letrozole.  Exactly what an early stage diagnosis would be recommended, not a metastatic diagnosis.  

A fourth woman sucked me into making donations.  I don't mind that I did so ... when I give money, I do so with the full knowledge that I may be being taken advantage of.  However, this woman claimed to have metastatic disease, was stopping treatments in order to enter a clinical trial, but supposedly had a severe stroke which prevented her from entering the trial and supposedly had nurses typing for her to communicate her needs.  Eighteen months later, she's still here, showing no signs of a catastrophic stroke, no signs of metastatic breast cancer and still asking people for money. 

Another woman claimed to have breast cancer in both breasts (which is possible); therefore, that made her Stage IV.  In her case, the claim seems to be made out of ignorance rather than deliberately trying to mislead people.  She finally changed her status to Stage II.  She seems to be doing okay. 

The last woman was misdiagnosed Stage IV and when she finally had a liver biopsy done, she found out she didn't have metastatic disease.  She swore she would never forget those six months of hell she went through and that she would always be an ally for those with advanced breast cancer, but her voice is strangely distant and silent regarding metastatic breast cancer.  Her official story on her website doesn't even mention her misdiagnosis and all proceeds from events she holds goes to "awareness and education."

Last week, I checked in on women who were diagnosed with metastatic breast cancer around the same time as I had.  Many of them are dead, but many of them are holding steady.

And then, I checked on women who were diagnosed metastatic after me.  So many of them are gone.  While it is encouraging to see so many living longer with metastatic disease, it's also so incredibly scary to see those who are living only that average 24 - 35 months.

Jody Schoger is one of those women.  Diagnosed with metastatic breast cancer in spring 2013, a full 15-years AFTER her primary diagnosis, Jody made the decision to enter hospice care this week.  I don't know Jody personally.  She and I have never personally talked/emailed ... perhaps we've shared a comment or two on our posts, but I know who she is.  She is a voice for metastatic breast cancer ... and was a voice BEFORE she had the disease herself.  She helped start up the popular Monday night Twitter chat #bcsm, something that many people have benefited from.

Jody wrote, "The only ‘good’ way of coping is the way that provides you and your family with the best possible life.”   As I look at all the decisions that all these women have made ... conventional, alternative, marijuana, nothing at all ... they've done just that.  They've made decisions they felt were best for them.  (Except for the absolute fakers.  No sympathy from me for them.  They are fraudsters.)

The photo of Elmo was taken in Times Square in NYC.  You'd think that Elmo was looking directly at me, but he wasn't.  The person inside the costume had taken the head off and twisted it to the side in order to take a break.  (Gosh, how traumatic for a child to have seen that!)  As soon as I saw him standing there, I couldn't help but think that Elmo was saying, "I've had enough of this."

And I have.  I've had enough.  I'm sick and I'm tired.  I'm exhausted beyond description.  I never feel rested and I never feel well.

I'm emotionally drained.  Besides Jody's decision to enter hospice, a local friend is making the same decision.  I know that she will die very quickly ... she won't be one of those outliers who hang around for a long period of time.  I'm so unhappy on her behalf ... I know she is miserable ... and I long for her to be free, but damnit, it hurts.  It hurts so much.

I want to be able to take my head of and position it to look another way.  Maybe that way, I don't have to acknowledge the pain.

April 9, 2015, Sherri Fillipo wrote these words:

"All’s to say, I am done. At least for the summer. I just emailed my oncologist that I was taking a summer break from chemo and was headed for the beach. I am sure when she reads it, she will faint. I know her. But she has to understand that quality of life means different things to different people. And Beloved and I have decided I am going to spend most of my summer throwing caution to the wind and getting as dark as I want to. I am going to have nieces and nephews and any and all of my children coming and going as much as they please. I am going to gorge on shrimp and corn-on-the-cob and wear out my margarita shaker."

With those words, Sherri made her plans.  A week later, she met face-to-face with her oncologist and she confirmed what Sherri already knew ... there was nothing left to try anyway.  All options had been exhausted.  The time had come for Sherry to have her fantastic summer, all unhindered by chemo appointments and side effects.  She knew the cancer would grow ... and it did ... but she still had a great summer.  She never started treatment again.

If you haven't had the pleasure of meeting Sherri, you should do so right now.  She belongs to the rite of storytellers and she has been regaling us with stories since September 2014.  Her stories of Mama Jane delight our souls and her observations of life around her delight her soul.  She's opened a world of quiet insight for someone who had a career as a nurse and ended her career as a patient.

I don't know Sherri personally.  She and I have exchanged a few notes in the past few months, mostly on hospice care.  She waited until she needed hospice to learn about it, while, I, voracious for information, have read so much on hospice long before I need it, I hope.  (I do so in order to be better prepared when the time comes and to be able to help my children process that information when the time comes.)

Sherri found release in writing.  Writing freed her to be ... simply be ... in a way that being around people didn't necessarily allow.  I recognize that need as writing does the same for me.

Most of the time, when a writer of a health-related blog reaches the end of life, the blog simply stops.  On March 22, 2016, Sherri wrote the following:

"Since we closed the door in Corning, things have disintegrated to the degree that, even though my heart breaks, I am unable to continue my blog.  To give you an update of my status – I need my wheelchair full-time, I no longer have an appetite, I have to deal daily with my discomfort/pain and I am consistently falling.  Hospice continues to come – three times a week now, and Beloved makes his trip from Corning weekly.  I appreciate and have felt all the love and prayers coming my way over the past few weeks.  I have loved blogging and it has been a source of therapy for me over the months as my illness has progressed.  I have made so many new friends along the way and I have been blessed by so many.  I wish those of you with similar circumstances peace and the best of luck as you continue your journey.  It is with a heavy heart that I say goodbye – this is my final blog.Love, Sherri"

Oh, how it hurt to read those words.  It hurts to read them now.

I was in Philadelphia April 8 - 10 and a group of women and I discussed Sherri and the beautiful impact she had on our lives.  Someone asked if anyone knew how she was doing and the answer was, "She's dying and is likely in her last stages."  I had been in touch with her aunt in March, but I didn't have any additional information.

It was only a day later that I learned that Sherri had died on April 10, 2016, a full year after she stopped treatment.  Perhaps she died during the time we, her distant friends,  were talking about her ... I don't know.  What I do know is that her passing has left a hole in the world that will never be filled.  Sherri was Sherri and no one can replace her.  While she called her husband Beloved, that name is how we think of her ... beloved to so many.

Until we meet again. 

Blame.  The world loves to blame. 

I toured a college campus in New York City today, along with my sophomore high school daughter.  As expected, campus security came up as a question and lots of information was provided on how a young woman could get help at any point in time.  I know they included young men as well, but most of the response was directed towards women.

As I came home and thought about it, I looked up a lot of information regarding safety for women at college.  One website gives this information to avoid sexual assault.

• If you're in your room alone (or even with your roommate) lock the door, especially if there aren't rules against boys roaming the halls.
  
• Don't invite men you don't know well back to your room. If it's a study partner, meet in place where there are plenty of people, like a library or dorm common room.
• If you're in your room with a guy, leave the door unlocked so someone can get in if you call for help or they suspect foul play. If the man isn't a love interest, leave the door open altogether.
• Travel in groups and always know where your friends are.
• Make an agreement with female friends to never allow each other to leave with a guy while intoxicated (according to several studies, half of all assaults happen when alcohol is involved).
• If you're alone on a street and see a guy approaching, cross the street. If he follows, walk down the middle of the street or in a location that's well lit and makes you more likely to be seen by passing cars or people in buildings nearby.
• Don't go into your dorm if there's a man lurking. He may try to follow you in and when you're in a private place, he has control. Go to a friend's house, the campus police, a 24-hour convenience store... anywhere you can find people. Also, don't walk into an elevator alone with a man. If he gets on while you're there, you get off.
• If your campus allows it, carry pepper spray or other rape-defense weapons. Reconsider carrying a gun, even if it's legal. You should never pull out a gun unless you're sure that you're willing to fire it. If he's bigger than you and you hesitate, he could wrestle it away from you.
• If you feel like you're in danger at any time, walk confidently and call 9-1-1.

Now ... there's nothing wrong with any of these tips, but there's something very blantantly obvious in the content: 

IT'S UP TO THE WOMAN TO PROTECT HERSELF!

If a woman were to be sexually assaulted, she would undergo a battery of questions to determine if she did everything possible to avoid such an attack.  The meaning behind such an interrogation would be "If you didn't do all you could do, well, it's your own fault."

What happened to teaching the men in our society to respect women and to leave them alone?  What happened to teaching men to NOT RAPE WOMEN?  Where is the list of safety tools for them to respect their fellow classmates while at university?

This all brings up the idea that women are responsible for any breast cancer that invades their bodies as well.  Did you smoke?  Did you have children late or early?  Did you lose any weight?  How's your exercise program?  Did you drink a lot? 

When a women is diagnosed with early stage disease, the world rallies behind her in order for her to "fight like a girl," and to "beat cancer."  However, in spite of the world class treatment that most women receive for early stage diagnoses, a disproportionate number of them have distant recurrences and become metastatic.

"Wait ... you have breast cancer again?  What did you do wrong this time?  I TOLD you to stop drinking Coke Zero!  I TOLD you to stop eating at McDonalds!  What's wrong with you?"

Blame, blame, blame.  So many studies are going on right now to "prevent" breast cancer ... thus increasing the blame on those who get the disease ... and those studies get front page headlines written by editors longing for hype, not fact.  

When will more money be spent on determining environmental factors contributing to breast cancer?  What's in all those products that are promoting the fountain of youth to women?  We have those who are afraid to age naturally, yet slap all kinds of things on their skin to slow down that process.  What's in those things?

What's in our car exhaust?

What's in our air outside of the exhaust?

Why do we want to make it all about women having to stop a disease in its tracks rather than fully researching what else can be done? Enough already!

Why are the patients to blame?

Stop blaming.

Last week, I put out a small video.  I'm providing the link again, along with a transcript that can be read at any speed!  End notes are provided with hyperlinks, and all hyperlinks appear at the end of the transcript as well.

• My name is Vickie Young Wen and I’m a daughter, sister, wife, mother, caregiver, friend and breast cancer advocate.
• In January 2012, I was diagnosed with invasive breast cancer. 
• After successful chemotherapy and lumpectomy, I have a clean mammogram.  I have no cancer in my breasts.
• I DO have over 75 breast cancer tumors in my body, throughout my bones and liver.
• I do NOT have bone cancer. I do NOT have liver cancer.
• I have Stage IV metastatic breast cancer … the ONLY kind of breast cancer that kills.
• No one has ever died of breast cancer contained to the breast. [1]
• Breast cancer kills when it moves to bones and organs.
• Less than 20% of the money donated via the most famous pink ribbon campaigns gets put into actual research dollars.[2]
• Very little of that money goes towards metastatic breast cancer, the only type of breast cancer that kills.  
• Approximately 40,000 women (and men) die of metastatic breast cancer each year in the United States alone.  Globally, the figure is over 500,000.[3]
• This number hasn’t changed in over 25 years.
• Breast cancer is not a “rite of passage” that all women should endure.  It’s not a pink party that equates “coming of age,” but is a deadly disease.  There is absolutely NOTHING pretty in pink about this issue.
• American federal funding for research dollars towards breast cancer has decreased over the past few decades.[4]
• The pink ribbon movement has brought corporate greed into the spotlight.  Marketers have learned that slapping a ribbon on a product increases sales.  Consumers do not know that this does not increase contributions to research.[5]
• There are eight different types of breast cancer that have a classification, along with all their subsets.  There is an additional “folder” that includes another ten or so breast cancers that are so rare that they have no standard of care designated to them.[6]
• The pink month of October (aka “Pinktober”) only gives ONE day (October 13) to focus on metastatic breast cancer. [7]
• 6 – 10% of all women diagnosed with breast cancer are diagnosed metastatic Stage IV from the beginning.  All the rest are early stage diagnoses.[8] 
• All early stage diagnoses have a risk of either local or distant recurrences, but the risk of recurrence is not the same for each patient.
• Many medical professionals are hesitant to use the word, “cured,” except when referring to cases of low-risk recurrence.  Patients can reach “no evidence of disease” as the cancer in their body responds to treatments.  Age, stage and type of breast cancer all impact the chance of recurrence. [9]
• There is NO consistent cure for breast cancer.  If there were, then NO ONE would ever have a recurrence.  There are those who reach “no evidence of disease” with low risk of recurrence.[10]
• Early detection does not save lives.  Early detection means a quicker start to the effective and innovative treatments that save lives.  If it were only about early detection, then not a single person with an early stage diagnosis would ever have a recurrence.  Yet, many early stage breast cancer patients have distant recurrences and become metastatic.
• Early detection does not guarantee survival. The fact is, more research is needed to understand which tumors are indolent or aggressive, regardless of stage.  This information can help predict the risk of recurrence.   A large number of patients (exact percentage unknown) diagnosed with Stage 0 – Stage 3 disease can have recurrences up to three decades later.
• Metastatic breast cancer patients will be in treatment for the rest of their lives, however long that will be.  Metastatic breast cancer has no cure.  They will not “beat” breast cancer.
• Breast cancer recurrence can occur regardless of treatment or risk reduction measures taken.  Half of those surveyed said they believe breast cancer progresses because patients either did not take the right treatment or the right preventive steps.  This places undeserved blame on people with metastatic disease.[11]
• Breast cancer has no prevention.  There are ways to reduce risk, but there is no definitive method one can take to prevent the disease. 
• Risk reduction is not the same as prevention.
• Many women with metastatic disease are asked by friends and family, “What did you do wrong?”  Breast cancer patients are not to blame for the disease invading their bodies.
• EVERYONE has the BReast CAncer susceptibility genes.  Mutations in these genes, known as BRCA1 and BRCA2, indicate an increased risk of breast or ovarian cancer, but they are not sure fire indicators that one will definitely get these diseases.  Knowing there is a mutation requires careful consultation with a genetics specialist to determine any course of action.[12]
• Having a double mastectomy may reduce the risk of primary or recurring breast cancer, but it is not a guarantee.  Many women have recurrences in scar tissue or in the remaining tissue in the chest wall, etc., not to mention, in distant locations.  It is not true that “no breasts = no breast cancer.”
• Prognosis of advanced disease remains poor and treatment options are limited.
• The reality is, while there have been advances in therapy, metastatic breast cancer remains incurable, with an overall survival rate of only 2%. The median survival following a metastatic breast cancer diagnosis is just three years.[13]
• When a patient is diagnosed with metastatic disease after having an early stage diagnosis, the stage remains the early stage.  The patient may be referred to as a Stage IV patient, but statistically speaking, the patient is (example) Stage I with metastasis to the liver.  There is no database for all patients living with metastatic disease.[14] 
• The two most common metaphors used to talk about cancer typically involve violence metaphors (war, fight, battles) or journey metaphors. [15]
• Some people feel empowered by such metaphors, while others feel disempowered.
• Every person diagnosed with cancer of any kind should feel free to embrace what works best for them when describing life with the disease.
• Pretend knowledge is very dangerous because it creates the powerful illusion of genuine knowledge. [16]
• Pseudo-science weaves in and out of real science and makes people believe that if they only did ___________, then they would be cured.  This is simply not true.
• It is not possible to treat cancer via any dietary or supplements plan.  It is not possible to treat cancer with an attitude adjustment.  Cancer patients do not need or want alternative cancer cures and if they do, they will ask for them. [17]
• There is no miracle cure for cancer …[18]
• And if there were, Big Pharma is not hiding it.
• Problems with conventional medicine don’t automatically prove that alternative ‘cures’ work. To use a metaphor, just because cars sometimes crash doesn’t mean that flying unicorns are a feasible transport option.
• There's a difference between someone facing a terminal illness CHOOSING to live a positive life and someone TELLING a terminal patient that they should be positive because it gives more meaning to their life. 
• Allow someone to live the life they choose for themselves … not the life that makes YOU more comfortable.
• Often, those with metastatic disease feel immense pressure to “hold it together” for the sake of others around them.  Being told to “stay positive” or “you’ll beat this” adds to this pressure.
• It is very difficult to find the right kind of support that allows an individual to express sadness and fear as those emotions make others uncomfortable.
• Many with metastatic breast cancer struggle with fatigue.  This fatigue can be treatment related or disease related. [19]
• Fatigue in a cancer patient is not the same as fatigue in a healthy person.  There is no amount of exercise or sleep that can overcome this fatigue. 
• Someone with metastatic disease can go to bed exhausted and wake up exhausted.
• Frequently, exhaustion is made worse by pain, insomnia, anxiety, mobility issues or an inability to eat properly.
• Because metastatic breast cancer treatments are not curative in intent, they are less harsh than those given to early stage diagnoses. Often a metastatic patient will have hair.
• Physical appearance is not the judge of the seriousness of metastatic breast cancer.  Many with the disease do not look sick at all.
• Two people with metastatic breast cancer may be on the exact same treatments, but may have completely different reactions.
• One may respond very favorably with few side effects, while the other may have no response at all or have horrible side effects.
• Metastatic patients are individuals with a statistic of one … their own experience.
• YOU can make a difference!  Your donations to organizations that invest in research (not awareness) is what is needed.  Please donate today to:
• Metavivor.org (100% of donations goes into metastatic breast cancer research)
• BCRFcure.org (87% of donations goes into broad spectrum breast cancer research at all stages)

(c) Vickie Young Wen 2016 "I want more than a pink ribbon"
(All website references confirmed March 31, 2016)

[1] http://mbcn.org/developing-awareness/category/13-things-everyone-should-know-about-metastatic-breast-ca
 

[2] http://iwantmorethanapinkribbon.weebly.com/blog/komen-race-for-the-cure-more-or-less
 

[3] http://seer.cancer.gov/statfacts/html/breast.html
 

[4] http://www.asco.org/advocacy/federally-funded-cancer-research
 

[5] https://www.psychologytoday.com/blog/pink-ribbon-blues/201310/cause-marketing-is-not-philanthropy  
 

[6] http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/about/types/

 
[7] http://www.huffingtonpost.com/elaine-schattner/metastatic-breast-cancer-awareness_b_760347.html
 

[8] http://mbcn.org/education/category/most-commonly-used-statistics-for-mbc
 

[9] http://www.breastcancer.org/questions/cancer_free
 

[10] http://www.breastcancerdeadline2020.org/breast-cancer-information/myths-and-truths/myth-20-new-treatments-can-cure-bc.html
 

[11] http://www.pfizer.com/news/press_kits/breast_cancer
 

[12] http://www.cdc.gov/cancer/breast/young_women/everyone_has_brca_genes_infographic.htm
 

[13] http://www.pfizer.com/news/press_kits/breast_cancer
 

[14] http://www.cancer.gov/about-cancer/diagnosis-staging/staging/staging-fact-sheet
 

[15] http://scienceblog.cancerresearchuk.org/2015/09/28/may-i-take-your-metaphor-how-we-talk-about-cancer/

 
[16] https://www.sciencebasedmedicine.org/a-tcm-challenge/

 
[17] http://scienceblogs.com/insolence/2016/03/31/cancer-patients-do-not-need-or-want-suggestions-for-alternative-cancer-cures/
 

[18] http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#miracle-cure   
 

[19] http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/fatigue/feeling-tired-vs-cancer-related-fatigue

Ever wish you could understand and explain breast cancer?  Ever felt puzzled at exactly what metastatic breast cancer is?  This video is for you.