Friday, February 15, 2013


Our blogging buddy, Marie does a weekly round up.  Geez, No Pressure There.....  She's a kinda sorta very busy advocate these days so she hadn't been posting those Friday round ups regularly like she was when she first mentioned THIS blog.  I look at that moment as one of those pivotal moments in my life.  It was August 26, 2011.  I can still remember how I felt seeing my name on in someone else's space.

This is my weekly WRAP UP.  Marie just wrote a piece about what we make of our lives after cancer.  I want to weigh in with some thoughts but my thoughts are all over the place.  For now, the only thing I can say is THIS, and by this I mean the blog and everything that has unfolded because I had this brazen idea that I could help just one person with my words. I'm collecting my thoughts and I will share them.

Looking backward, the very first comment that was left on this blog was on July 27, 2011.  This space wasn't "live" for ten days and I can still remember the thrill of seeing one simple sentence saying "thank you."  That it was posted on the five year "cancerversary" ....  the dividing line in my own life, that day I heard, "You Have Cancer," gave the words a far deeper meaning.  Just a few weeks later, there was a comment from Barb Bristow.  Barb is my first "connection" turned friend, turned extra special person and not so long ago, Barb learned she went from NED to metastatic.  Tears sting my eyes every time I think of what she is going through. Please send some love and good thoughts her way.  We swapped texts a few times this week.

And Jan.  Since that blogroll is now on a page rather than on the side, I FORGET to check the list.  It would not have mattered since Jan hasn't been to her space but I saw a comment (on Marie's blog) about her status as a "metavivor" and I went cold.  I went on a frantic search trying to figure out what I missed and HOW.  It felt like forever but I did hear from her via email.  She responded to treatment and I am sending love her way, too.

And Jen...... another rough patch.  Glad to see she left a note in response to a comment someone left on her blog.  I'm worried about her, too.

And Ann....Not on an Easy Chemo but damn... this is the last day of voting and I want her to win that prize.  She's neck in neck with another blogger.  Ann is hoping to have that $1000.00 for her son's college fund.  I try to remember to vote every day.  I've not been great at the daily voting but I try.  Today, I need all of you to vote and share with everyone you know.  Voting ends at midnight Eastern time.

And Lori...... wherever the hell you are.... I love you.  Do you need anything?  I'm here.

And mom.  Always... Mom.

And really everyone and anyone else.....  I didn't start naming names to leave people out, it's just that these people have stuff going on right now.  And I'm somewhat involved in their stuff.......

More ramblings..... my sweet friend Stephanie.  Yesterday was Valentine's Day.  Because it's a day of "hearts" I wanted to send her a special note.  Hours later, I learned it was also National Organ Donor's Day.  Stephanie shared her story here. Stephanie is alive because she was given the gift of life in the form of a heart transplant.  She is tireless and passionate. She's a gentle giant in the world of advocacy.

Yesterday's film clip compliments of Flight.  Chemo Brain.....  Hollywood validation in 47 seconds or less.  That was brought to my attention by Ronen.  Medivizor.  Step Aside Dr. Google, Enter Medivizor.  THAT Ronen.  If you haven't submitted your email information, please do.  When you get the link to "join" be as specific as possible.  They don't want to send you anything that isn't relevant to your situation.  Please share with your Facebook friends, your support groups, anywhere you possibly can.  Medivizor for personalized, custom tailored information.

One final note before I bid this week a final farewell.  On Tuesday, I offered my thanks to ASCO for providing Patient Access to publications.  Thanks to the blog written by Dr. Miller, I learned about the access and shared it here.

I am reprinting the comment he left beneath that post.  First, I'm not sure people follow comments after they read a blog post and second, the links in the comments are not clickable.  Dr. Miller wanted to be sure the proper people were thanked for their efforts in bringing the access to the publications to the patient community.

Take a look around the Conquer Cancer Foundation website.  Then, information?  Reliable information??  Cancer.Net for every type of cancer.  And lastly, the link to the page where donations can be made.  Now that I've addressed the clickable links, time to turn the floor over to Robert S. Miller, MD or as he is known on twitter: @rsm2800

"AnneMarie, Thanks for your kind post but mostly for helping publicize this. I want to give a special shout out to the Conquer Cancer Foundation, formerly the ASCO Cancer Foundation, for funding this initiative as part of their mission endowment grants to Cancer.Net and ASCO's patient advocacy programs. Readers of your blog can follow them at @iConquerCancer and read about some of their work at their web site Part of their mission is to fund clinical cancer research, to support patients and caregivers through grant support to Cancer.Net (allowing Cancer.Net to be free from pharma ads), and to support ASCO's patient advocate's scholarship program at the annual meeting. While there's no shortage of cancer-related charities, I would encourage your readers to consider donating to CCF ( Thanks again"


  1. Thanks for expanding on my theme not just of the weekly (ahem should that be occasional) round up but also on the journey we have all been on together as we walk beside our friends and continue to support them, however imperfectly. Much love to you always my fearless friend xxxx

    1. Thanks to you, Marie... I know the manner in which social media ripples and your weekly (ahem) round up truly sends out a tsunami. I found many of our blog buddies through your round up and I connected with many others because you mentioned this blog in that round up. Paths cross and when ours intersected, I jumped on a wave that has yet to crest. I don't know how to even begin to express the gratitude I feel...


  2. AnneMarie - you and all your fellow bloggers help MANY with your words - many that you will probably not even know. Keep up the fabulous work!

    1. Your words mean so much to me..... thank you!!!

      Hugs heading west....

  3. Aw, many of our cyber-friends on our collective minds and in our hearts. ASCO rocks. I really applaud all the groups & research publishers who make publications available to patients. I've signed up for and downloaded and linked so many, I can scarcely keep track, but a lot of them now 'get it' that patients really do read & appreciate these things, even research studies, that we are stakeholders, and that our perspective matters. Even when a science journal does not provide free patient access to articles, I encourage everyone to email the designated researcher to request a e-reprint. There is almost always an email contact address listed with a study publication. And researchers are only too happy to know that we are interested in what they are doing. As ever, hugs to you & your mom. xoxo, Kathi

    1. GREAT suggestion about emailing the researchers for copies. I KNOW they are delighted to see we, the stakeholders, those for whom their work matters most, are reading in earnest!

      I just found another "patient access" portal in a completely unrelated journal. Sent them an email to request a PDF and I received it within hours, from a real person who signed the email with the attachment.

      I agree with everything Bob wrote in his blog. THERE may just be one line in a particular study that the journalist thinks is unimportant but may be highly significant to a number of us. THIS is what collaboration looks like and this is the way to build upon existing research and tease out those "little things" that my hold promise for many.

      Much love, Kathi...


  4. AM,

    First and foremost, thank you SO much for your friendship. Second, thank you for inviting me to share my story on your blog, the first time it had ever been shared on someone else's blog. Third, thank you for introducing me to the force that is #BCSM, a group that unfortunately many of my fellow adult survivors of childhood cancer will become a part of in their future. Fourth, thank you for your remembering me and my donor on Valentine's day, beauty from ashes, yet bittersweet too. Lastly, I love you, my friend!


    1. Steph...

      You are a beacon of light for so many and your "heart" in every sense of the word is gentle and pure and SO GIVING. I am a better person because YOU are in my world.

      I love you deeply. I am in complete awe of everything you do.

      MUCH LOVE,


  5. dear anne marie,

    the "wrap up" - great job. and it's only a small sample of what a generous, warm, loving and compassionate heart you have. i will always remember that you were the first BC blogger i ever connected with, helping me as i took my first wobbly steps into a whole new world of information, issues, and such important conversations about so many diverse subjects. thank you for always being here for me, for hugh, and for being such an awesome advocate; thank you for helping me find a purpose in doing what i can to contribute - it's made such a HUGE difference in my life to have some way to give back for all the support i have received.

    i love you dearly! XOXOXOXO,

    karen, TC

  6. July 27, 2011 was the day of my first craiectomy! The power of the Internet is incredible- and I'm always touting its benefits and I'm humbled by its far-reaching power.


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