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12/21/2014

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Barbara Jacoby wrote and article for the Huffington Post entitled, "What are we doing about metastatic breast cancer?"  She made some very broad statements, most of which were not based in fact.  She accepted comments on her article, but when she started getting too many from metastatic patients who vehemently disagreed with her opinions, she opted to delete all comments.  The following is what I posted before she deleted it.  I posted it four times and she deleted it four times.  The original article can be found here:  http://www.huffingtonpost.com/barbara-jacoby/post_8602_b_6252014.html?fb_action_ids=1574405382795718&fb_action_types=og.comments


"As someone who has lost 11 personal friends to metastatic breast in the past year alone, I do not take comfort in the "progress" that has been made. As a woman with Stage IV (terminal) breast cancer, I do not take comfort in the fact that the death rate due to metastatic breast cancer hasn't changed significantly over the past few decades. Last of all, most of the research done for Stage IV breast cancer, rapidly becomes more about early stage diagnoses. Your claims are simply very wrong.

"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." http://www.medpagetoday.com/HematologyOn…/BreastCancer/48627 (I don't know about you, but I'd much rather have a cure, than just a lengthening of life.)

"From the same article: "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."

"I encourage you to read more about what you are writing about. I don't know where you get your statement that early stage research also applies to advanced stage research, but most of the time, that simply isn't true. It's usually the reverse that is true.

"When "breast cancer awareness month" became a month-long party more about making profits based on pink sales, metastatic breast cancer got lost even further. People don't want to hear our voices and we're called party poopers for wanting more attention. If I had my way, I'd make October all about metastatic breast cancer (without the "cutesy pink boobie" crap) with one day being set aside for a huge party for those who are disease free.

"I hope you never are diagnosed with advanced breast cancer. I really do. If you are, I think your song and dance will change as you will look at it through different eyes. There is NOT enough research for a cure. I want more than that pink ribbon and I want more than a lengthening of my life. I want a cure."

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No news is generally good news

12/20/2014

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Someone reminded me this morning that I haven't posted an update as of late.

In short, everything is fine.  I continue to struggle with some hand/foot issues as side effects of the chemo, so the doctor advised an extra week or two off chemo to let them heal.  It's hoped that once the body catches up with everything, that there will be no future problems with it. Due to my feet issues, I haven't been able to exercise as much as I would like.  I'm hoping to find a way to get around that one of these days.  I'm more fatigued than I like and part of that is due to lack of exercise.

My tumor markers remain normal, although with slight increases.  No worries until a noticeable trend is seen and even then, no worries.  It is what it is and most days, I feel quite normal and move along with life.

The kids are now on Christmas vacation after a very full autumn semester.  Michael's soccer team placed second in the Northwest Sectional Soccer Tournaments ... something no team from Sunnyvale has ever done.  None of our teams have ever even made it that level of competition.  It was a great season and Michael grew a lot with the team.  He is now on his school's team and will play in a more competitive league in the spring.

Rachel's cheer squad placed second in their division at the USA Cheerleading Competition.  This was their first competition of the season and while they weren't perfect, they learned a lot which will help them prepare for future events.  More importantly, Rachel is enjoying her cheer time and looks forward to next semester.  She has quite enjoyed her first semester as a high school student.

Art continues to work hard to provide for us.  The end of the year is always a busy time for companies and this year is no exception.  We do take time for weekly date nights. 

I remain content with the activities of a stay-at-home mom who is rarely at home.  My life is full and my bucket runs over.  While I am "busy" in the activity sense of the word, I'm learning more and more about just "being."  This time of year has me doing more "stuff" which makes me miss my times of being still.  I do know that God is with me, regardless of my activity level, and I enjoy his company wherever I am.

2,000 years ago a baby cried in Bethlehem.  His voice is still heard around the world.
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It's not about the boobies!

12/7/2014

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Picture
This is one on the atrocities being promoted, all in the name of "fighting breast cancer." There is no call to action, just cute little ginger people with pink boobs ... and two without boobs. Are those men or women who have had bilateral mastectomies? We're more than aware, people! Let's work on getting a cure so that women will have more holiday seasons!  (Oh, and you should see the uproar that resulted from my comments about these cookies on the original site!  I will not give them credit and I will not acknowledge them on my blog.)
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I'm dreaming of a pink Christmas?

12/5/2014

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I thought I had seen it all, but I hadn't. I shouldn't be shocked by anything that the pink ribbon does, but this morning, I literally gasped to see a graphic Christmas tree made of pink ribbons, proudly touting the catch phrase, "I'm dreaming of a pink Christmas." This is what we've come to? I'm dreaming of being here for Christmas 2015 ... because I don't know if I will be. But that's okay ... let's make breast cancer look beautiful and let's incorporate it into a festival and let's decorate it up just like we decorate trees. Let's make it a big party. Let's forget that it's killing FOUR women every single hour in the United States alone ... even on Christmas Day.

Bah humbug.
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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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