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Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -

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Saturday, July 26, 2014

Where does it end?

I subscribe to several metastatic breast cancer groups on Facebook, and it seems like almost every day I see a post, similar to this one, regarding another sister who has passed or is in the last days of her life. I often search for the person on Facebook in an effort to remember this person as an individual and to try to piece together their story.  No matter how many times I do this search, I'm always amazed at what I find.

The post pictured is a recreation of an actual post that was on one of the metastatic breast cancer groups that I participate in.  The thoughts and words are similar to the original, but are not exact, so that I did not cause any problems by plagiarizing their words.  

All of the timelines tell the same unfinished story.  The latest post is usually 2 to 3 months ago.  The pictures posted are often of them with little or no hair, smiling, and enjoying time with their families and living life just like you and I.

Their words are upbeat and positive.  There are often mentions of their latest scan results or details of their next office visit where they will find out about their next treatment. There are never any posts about their decline or going to hospice or the hospital even.  It's almost like their decline occurred overnight.

Two months is a very short period of time.  These women were alive and living two months before and now they are gone.  Their pictures and their posts show no indication of them knowing ahead that this was coming.  It's a like a huge part of their story is missing, like one of the abandoned homes that are often found in photographs where all of the person's personal belongings are just as they would be if they were coming home tomorrow.

I often wonder about the events that occurred between that last post and their untimely death.  The series of events that brought them down in such a short period of time.   And, I wonder if my Facebook page will one day tell a similar story.  Will someone who reads about my immanent transition to the after world seek out my page and wonder the same thing as they browse through my pictures and posts?

Unfortunately, the ability to stop this outcome is mostly out of my hands. The only thing I can do is try to open your eyes to this situation.  I ask that if you choose to donate to a charity that claims they fund research for a cure, that you verify that they actually do put the money towards finding a cure.  Most of the current funding raised is going into non-profit CEO's pockets and towards free mammograms for people who don't even have the disease.  How is this helping those of us with the disease?

Please, THINK before you PINK.  Do your own research on where the funds go!  Don't just buy into the propaganda and believe that just because they are a big non-profit like Susan G Komen that they are actually putting the money you contribute towards finding a cure.  They are actually taking money away from the legitimate groups that are trying to find a cure by using their huge marketing campaigns to make people think they are helping find a cure.

If you are inclined to contribute towards actually finding a cure to save those of us who are dying, the list below contains some non-profits that I believe are worthy.  Please take the time to research any and everything in this article and always know what the non-profit chartiy you are contributing is using your donation for in the future.


  1. Unfortunately, the original image that I posted with the blacked out names and pictures was seen as offensive and an invasion of privacy by other people in the group(not the people who were actually in the post, I did not see them reply). I tried to explain to the group that this was not my intention, but people weren't able to get past the fact that I used an actual post. Out of respect for those who felt violated, I replaced the actual post with the fake one you see now. According to comments after this was done, it was too little too late and there was nothing I could do to make it ok.

    It's amazing how a simple post to let people know that I went out of my way to protect the privacy of the group and wanted to make sure they were not offended quickly turned into a bashing session. Nothing I said or did seemed to help. I understand that some people are very concerned about their privacy and don't want to share their thoughts, feelings, or maybe even their diagnosis with anyone, and that is their right. I feel by eliminating all identifying information (name, picture, not mentioning the group's name) I protected their rights.

    Personally, if posting my social security on Facebook would save a handful of people from this disease, I'd do it. I will advocate for myself and this group and the need for a cure until the day I am the one they are posting about. If one of my readers learns something from this blog post, because it brings to light the types of posts we read every day in these groups and the thoughts and emotions it invokes in us, then it was all worth it. Hopefully, it will help my readers realize this isn't just another post, it's really occurring to real people every day and they will make others aware of this and more donations will be given to the right non-profit groups and the need to post about these unnecessary deaths will no longer exist. This is when it will end.

  2. The funny part about all this is that the post did not come from the group that actually took offense to it. Since the picture has been removed and due to the awful bashing I took from the group that it didn't even come from, I will not reveal the group or the people who were originally involved. I chose to leave the group that did the bashing me over something that I didn't even actually do.

    1. I witnessed that, and while I can understand both sides of the issue, I do feel the reaction was a bit over the top. I do think that the second image that recreated the same intent is a better solution. I do understand what you were trying to do, and I'm sorry that some people are too stubbornly intent on being right to see that mistakes can be made and you listened to the complaints and edited the post accordingly to fix the problem.

  3. Thank you for being understanding Susanne. My intents were good. I just want to one day wake up and never see these types of posts again.


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