Saturday, June 18, 2011

Family (Literacy) and Friends



















Blogging backlog, testy technology, foggy memory and attempting to sort things out..... For whatever reason my Picassa program for downloading my photos has not been chronologically correct this spring. Picassa has just randomly put pictures willy & nilly where ever it has thought would be the best way to confuse me. I've encountered this once before and if I'm blogging in real time it hasn't been too nutty. As I think back now, literally a couple of months after the Family Literacy Conference has come & gone, I do believe that these particular pictures are from the day-BEFORE my presentation. (So these pictures took place before those I've posted over the last couple of days..... not that there will be a quiz over any of this. LOL) The only reason that I knew that these photos existed and went searching diligently for them, is because of the last two images in this series above.

Those last two pictures are very near & dear to my heart. They are dear cyber-sisters from BCO (BreastCancer dot Org) who live just across the river in southern Indiana. There are tens of thousands of members at BCO -- unfortunately -- and the longer I remain active there, now offering support, where once I was the recipient of amazing support, you come to feel as though you truly know your cyber friends. But the three of us are significantly even 'closer' as we are three members of "Team January 2010" meaning women all going thru BC surgery in the same month: together. We three were truly on the same trajectory of anticipation and experience and have followed each other's stories very closely as a result.

I don't think she'd mind if I mention that in the two months that it's taken me to get these photos onto my blog, Gina, pictured in khakis in the last two pictures was actually diagnosed with Breast Cancer for a second time and has gone thru yet more surgery & its aftermath. So she and I consider ourselves to be two-time sistahs and have the unique experience of knowing what that second diagnosis feels like. Tall Robin is a musician and she has used my materials in her elementary music room setting. So it was an enormous thrill for me to meet the two of them!!! I am particularly blessed to meet my BCO sisterhood in my travels and these two are truly gems. In the hour we had to visit we all 3 yakked in unison nearly the whole time, just taking breaths in-between for the laughter to roll off into the hallway. Thanks to all my Team January buddies & especially to these two who made a point to track me down.

As I am re-thinking what having this blog is about, who it is for and why I keep adding to it, I periodically do indeed reference my trials with BC and how that fits into the whole picture. Some suggested I keep a whole separate blog about those travails. I knew that I couldn't keep all of that straight. It's all me, polka-dots, laughter, breast cancer, quilting, artwork, BC side effects, singing children, the whole of my ups and downs, all rolled into one, which is after all how my days unfold. Tangled together. One reality impacting the other.

There was just recently a thread (discussion) over at BCO entitled "Did I Make My Treatment Look Too Easy" and the person writing shared that she had been all 'happy-face' and nonchalant with her professional peers & buddies during her treatment and then was surprised that so many were lax in offering her support. The title of that discussion has really had me reflective. I've thought about what a 'dis-service' I may be to my fellow sisters, in that I am out and about and might appear to be traveling the world with big cheesy smiles as though nothing's happened. On one hand the fact is that both of my BC's were detected VERY early and consequently I've never had chemo or any of those ramifications. I certainly refrain from calling it 'cancer-lite' but the fact is that my experience is far from that of many women, whose work is truly impacted by treatment and its aftermath. Then there's the extremely unbelievable oddity that I would have Lymphedema ramifications, that are barely understood by anyone: layperson or professional.



As long as I'm on a ramble I just feel the need to point out that while I am able to appear to 'zip' about in blog pictures, the LE does raise it's ugliness in my stamina and also in what I even schedule to attempt. I have the great good fortune of having a husband who can now do the extreme driving that I had once done under my own power. He's there to lift in and haul out all of my gear and the boxes of books -- there is no way on earth that I could attempt such exploits solo any more. Hurrah for Allen!!! BOOOOHISSSSS for LE!!!!



BC is a strange concoction of initial shock, multitudes of pamphlets, numerous doctor appointments, marketing over-hype, personal experience, some individual yet genuine limitations, follow up dread, celebrity spotlight, and the stark reality that science is not yet providing all the answers. I write this post on the heels of learning that science failed our dearest "Konakat" a too young Canadian, who by all rights should have been a stand-up comediane. She was brilliant and funny, making hilarious descriptions of her decline as she spoke of chocolate in memorable ways. She was too amazing for you to have any sense in a quick mention here, but she will be utterly & forever missed. Her voice was so completely unique, witty and informed, upbeat even in the face of the unthinkable and now it is forever and all-too-soon silent.



Every now and then I feel the need to veer from the polka dots and share just a tad bit of why I am so THRILLED to continue my work, humbled/hobbled as I am at times. Despite all of the pink ribbons -- from dog food labels (truly THE most bizarre use of a pink ribbon ever IMHO) to license plates and everywhere in between.... we are still losing far too many brilliant women, far too early. This being my 1312th post I felt the need to get a little off my chest.... where there's not a whole lot of much anyhow. End of rant.

I promise a quick return to the beach tomorrow, in time for Father's Day, as I stumbled into those pictures in the cache of out-of-order photos. We will return to sunshine and lollipops, which is where I prefer to spend the majority of my time.

4 comments:

  1. My mom mother in law and mom had breast cancer within a few years of each other, both survived.
    I read your entire post. It's great you have support. I like knowing more about you. Keep up your great work!!!! And keep smiling!

    ReplyDelete
  2. Donna,
    Thank you so much for being you and the songs you sing.
    I was wondering if you had ever heard of this project at the University of Missouri where researchers are creating a online site that is “Merging all of the data into one virtual space and discovering clinically significant knowledge from the haystacks of data will make cutting-edge research and treatments available to patients sooner.”?

    http://www.dailyrx.com/news-article/virtually-well-3847.html
    The doctors are aware that people looking for information about lymphedema treatment have to visit dozens of medical websites or consult a best practices document, which has not been updated since 2006. The new system will enable immediate access to data, best practices, literature and research from around the world as it is posted online, all in a single, searchable online database.

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  3. Michelle. I just 'found' your kind comment. Thanks so much for your support & encouragement. I lean on the strength & courage of others when I get weary.

    I am very fortunate to have the cheering of both family and friends to lift me up when I get discouraged. I'm very grateful for your kindness. xx00xx00xx00xx

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  4. Wow, Anonymous...... thanks for the great resource. I just found your comment which got stuck in a spam filter. I'm go glad that I could move it from there today for any others who might stumble in here & appreciate your sharing the link.

    Thanks!

    Debbie

    ReplyDelete

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